Multiple Sclerosis & Faith

A tribute to Dr. Schermer

2012-02-11T09:16:00.000-07:00

It's February 11. Every year since I was diagnosed on this day, I go through a time before the 11th when I feel depleted, helpless, and a bit confused as to why. Then at some point it hits me - this day, this time of year.

On this day I traveled with my good friend Kelley, an hour from Kenyon College to Ohio State University Hospital, where I had seemingly infinite tests over the course of years, with none of the tests indicating anything. But this day would be different.

The physician for Kenyon College at that time was wonderful. Dr. Schermer. He was the only one who was honest with me about what was occurring. He always had thought I had MS, but he never said so. Others said no way, this can't be MS. He talked to me the day before I went, looked me in the eyes, and told me I would get an answer, and gave me his phone number. I don't know if he knew that the tests they had scheduled for that day were the wrong tests to diagnosis MS, that the tests shifted halfway through the day.

Because of the shift in tests, all I remember during that day was going from test to another - random tests that seemed like last-ditch efforts to find something - anything. These efforts had increased because I had lost my balance over Christmas break when it was dark, hit something, and got a large gash in my forehead requiring stitches. When I returned to Kenyon and Dr. Schermer removed the stitches, he pushed for finding an answer.

Feb 11 began with 2 random nerve tests which were a bit painful. Then I had another MRI (over 3 years, I had tons of these). But during this one, wait, something had been found. That led to more MRI images all of a sudden, shooting dye to show things better. Then a spinal tap was scheduled and done. Having a needle stuck in my spinal cord to remove fluid was no fun - I don't recommend them for anyone, unless needed. There were more tests, too.

I had been reading - I knew the changes in tests were pointing toward an MS diagnosis. But no one could say anything until I saw my physician. I wonder, do people realize how that felt? I had my friend Kelley. She was awesome. But I was in this big hospital in Ohio. My parents were in Colorado. I was alone. No one was saying anything because they couldn't. Surely a 20 year old was ok with this?

When I finally saw my physician at the end of the day, he told me there was no tumor in my spine but there were a few lesions indicative of MS. Then I got more bloodwork to make sure this was, indeed, MS. Yup - bingo!

Knowing - in a sense there was relief in that. It wasn't easy. I had a great support network at Kenyon College. Ohio State tried to pair me with an MS specialist which didn't go well. I begged to get to keep the same neurologist and I got to keep him. Dr. Schermer also made sure of that.

Dr. Schermer stayed involved. When I had an MS attack at Kenyon, he infused me with steroids. Years later we laughed at this - "remember when?" When I got the flu, he scolded me for nOT getting a flu shot, and that I had better be the first one in line for flu shots every year after that. I was but now I've stopped. He's many states away and can't look me in the eye and scold me. I'm on Ampyra and haven't been sick since that started (well,, I had a 1 day fever). Not getting sick is so odd, but so are things like craving milk and using a pill of Prednisone (a steroid) about once a month to calm leg spasms and help me sleep. Steroids usually don't aid sleeping!

I've been back to Kenyon twice in recent years. I love that place. I hope my daughter can go there. Both times I saw Dr. Schermer. He's the best. We can talk politics and it's in a way like talking to myself and getting very excited that someone thinks the same way. He tells me about Indian reservations and medical care there (he spent a year practicing medicine on a reservation, or near one) - I learn. He shows my daughter horses, lets her play with his dogs, and gives her all the ice cream she could ever want. He can't wait to hear if I'm on something new. I know he knows I'm on Ampyra. But I'm much better than when I last saw him, less than a year ago. I know he's still cheering for me in Ohio. He has an incredible enthusiasm and passion for the important things in life.

So today I remember the day. I remember the year as a fog, living in a dark room on the 4th floor of a dorm. I remember an incredibly supportive community called Kenyon College. I remember supportive friends and family back home.

I celebrate Ampyra. 20 months without an MS attack. Walking around the track in 21:44 without having to stop to rest. Walking up the big hill to my daughter's school for the first time - the office staff so happy to see that - a boy telling me I looked like I was dancing - and the next time I saw him he said "you're still dancing." So many little things I took for granted. Soon I'll get the Bioness (www.bioness.com) to help me walk.

But mainly this year, I'm going to remember the role Dr. Schermer played, and the wonderful person he will always be. Thanks to him for all the caring, always believing in me, always concerned about me, and the laughter we shared years later.

Peace.

This day

2012-02-08T21:44:00.000-07:00

Sometimes a day, though just another mundane day, seems a bit different than just another mundane day. Today was one of those days.

I didn't wake up in the best mood because I had been up at least 4 times with leg spasms last night. Leg spasms are terrific. My whole leg will actually jump and then may shake as muscles cramp. It hurts in an annoying way that is hard to describe. The only way to alleviate it is to get up and walk. Getting up 4 times to walk is a bit irritating.

My first stop this morning was 45 minutes from my house, across town, through rush hour, to get a new back for my wheelchair, and NPR was having their fundraising time - seriously, today? Getting a new wheelchair back should have been exciting because it's a solid back and the handles behind the wheelchair are positioned, bent in rather than sticking out, so people are less likely to grab them and start pushing me without asking. Since I now have this strange sensation that I need to sit straighter, I need a wheelchair back that is straight. The problem? It was about 10 feet into the store, and it's easier to grab my walker than to go through complete wheelchair assembly right now. Times have changed. By the time the wheelchair was ready, my legs were ready to walk - Ampyra kicks in at about 10:30 and says, "Walk!" It's a strange sensation where I can feel my leg muscles turn on and stiffen a bit.

But I had another 35 minutes of driving back to work in this irritated state of having to get up 4 times last night and then being ready to walk but sitting in my wheelchair. As I drove, I decided I didn't want to walk loops at work today - I've been a bit "down" lately and need some kind of change. So forget the wheelchair today - no more wheelchair assembly for me! I found a parking spot, got Bart (the walker) out, and was off. I think my balance must be improving because taking Bart out of the huge van used to be impossible.

I made it into work without a problem - I was stronger than the last time I tried this. But then I had to figure things out... with a walker, there are new obstacles. I told a friend, via computer, than I had walked and was discovering obstacles and she said, "like what?" Interesting as she has a disability, but doesn't use a walker. So, here are obstacles. To go anywhere fast was not an option, and I had to determine how much energy I had. Getting coffee, carrying coffee, getting anything, carrying anything - difficult. Imagine having to hold onto something at all times, only be able to use 1 hand/arm, and still not be quite steady. Simply going to the bathroom was just different, because there are doors involved. The biggest obstacle had to be my office chair, which has wheels and swivels. I take my leg braces off when not walking. Doing this with a rolling, swiveling chair was comical.

The whole day was one of those where questions are asked and I answer. When I turned on my instant message part of my email to ask someone a question, a few people saw it. "BETH!!!!!!!!!!!! Can I send you something and get your thoughts? BETH, did you know..... BETH... what do you think? BETH... what should I do? BETH... do you think I should do this?" It was one of those days.

Elevators! Going home, of course the furthest elevator popped open. I wouldn't make it in time. I was tired. So I lined up Bart to point toward the elevator and got in almost a race starting position...

On my mark, get set, reach behind me and push the button, ... go go go ... ding! (elevator opens), go go go... ram Bart into the elevator opening just in time. Ha elevator! I win!! Wait. Hit 1 to get to first floor. Start twisting as elevator is moving. Ding! Twist twist twist... ram Bart into elevator entrance again. Someone should have videotaped that part of the day!

Whew! Back to the van. There's a short area that's a bit steeper before the parking area. At 5pm, I was tired yet determined, and I made it down that and around to my van. I pushed up and got in. Then I had to move Bart to open the middle door, open the door, and maneuver Bart inside the van. Done!

On my way home, with NPR again fundraising (since I give, can't they fundraise when I'm on vacation?), I turned the 80s station on. This was the best part of the day. If 80s geeks recall, Mr. Mister (a group) had a song. And then, ..., "Life is a mystery, everyone must stand alone, I hear you call my name, and it feels like (pause), home." There it was - Madonna. So the mom in the big white mini van (that's me) cranked it and sang all the words, just like during the Superbowl halftime show, when her daughter retreated to her room at the horror of her mom's excitement.

Just like a prayer... on this mundane day, which started in an annoying way, trying to get through things, trying new things, testing limits...

And as I'm finishing this, there's a wood carving of Jesus carrying a cross right next to me. He helps me through all days, including the days where I feel tested and test things myself. And there's always a bright spot somewhere.

Peace.

The Elephant in the Room

2012-02-04T14:09:00.000-07:00

"I wasn't an artist who'd become an artist. I was an activist who'd become an artist. Ever since my mother had drummed it into me, I'd felt the need to fight injustice wherever I saw it, in whatever way I could. Somehow my mother had made me feel it was my job, my obligation. 'And don't ever give in,' I can hear her say still. 'Don't let them get you. You fight, boy. You fight.' So I'd spoken up, and done some marching, and then found my power in songs of protest, and sorrow, and hope." ~Harry Belafonte, from his book "My Song."

That resonates with me. Belafonte went through so much in his life in terms of discrimination and he fought it. With disability, while not to the same extent as what Belafonte experienced, those with disabilities may fight discrimination, or fight separation because of really wanting to be just like others with the same opportunities, or simply fight disability itself, trying to do everything like everyone else. Disability is often the elephant in the room.

Here on the front range (not in the mountains, strangely) of Colorado, we just got 2 feet or more of snow. It came fast and furiously. It left many stranded and unable to get out and where they wanted to go. For those with mobility problems, stranded feels mild. I've been emailing a few friends. We haven't been just stranded to our local neighborhood or cul de sac. We've felt stranded inside, to be safe.

I love to see pictures of friends and family doing things like sledding in the snow. I love watching my daughter and her friends play with all the snow in our cul de sac. If there's a positive, I don't have to shovel the stuff! But I wish I could do all those things (except shoveling, of course), but I can't do them without a lot of effort myself, but moreso of others. I now know why I love to ski - I actually get to be in the middle of things, outside, in the snow. This year I'm not skiing because I'm working on walking and trying to get my shoulder to mend a bit more. But when I go skiing, I enter the ski office and everything changes - the elephant in the room (disability) goes out the door and we ski!

So, this snowstorm has brought a mixed bag of feelings. As I said, the snowstorm has forced people with mobility problems inside more than those without. Limitations actually then migrate to affecting employment. How do different companies handle this? It's dangerous to go to work - maybe for everyone; moreso for people who have trouble walking or who primarily use wheelchairs. There are efforts to better employment for people with disabilities, but with snowstorms, disability and employment can mean the elephant in the room becomes bigger.

I did a quick survey of a couple companies and their reaction to the storm. At one company, all employees regardless of disability were told, the day prior to the storm, to be safe, and if they could work from home the next day, they should. At another company decisions varied by department. In some departments, all people were encouraged to work from home. In other departments, it was obvious that a person who uses a wheelchair should work from home due to safety, and others may have had the option to do the same. One person with a disability said "please, don't risk going out. People can slip, fall, break bones. You know how that goes. Then it's the hospital, and then the nursing home, etc." Bingo. In another department, trying to treat everyone the same, people were told that if they needed to stay home, they should take a day off. Problematic. A person with mobility problems might have been able to work from home and didn't want to go into work for fear of slipping, falling, etc... But without an accommodation, they were required to take the day off. Did the company think that if this employee fell, the expenses would be significant, and most likely not worth it?

For people without disabilities, there were choices. They could choose to stay inside. They could also choose to go outside. For people who have trouble moving/other concerns, most likely they stayed inside and watched the snow fall.

I enjoy seeing all the pictures of the fun people are having doing things like making snow angels - at the same time, I have to be honest and say it hurts to be stranded inside. I could go outside and watch - many parents do just that - but if something happened and someone needed help, I'd be an observer, unless a call to 911 was needed - I could do that! I think most with very significant mobility problems would love to not have these problems, to have a choice to take the day off and play in the snow, to have the choice to go into work or not.

Back to the decision... to take the day off or to come into the office. It would be dangerous to go into the office - that was a given. It was possible to work from home, but to treat everyone equally, the decision was made that working from home was not an option - take the day off or get into the office. Then a person with a disability, needing to work from home, had to go through a process of getting a note from their doctor - to make a "reasonable accommodation" that they should work from home in bad weather, rather than just doing what would sense and work from home. And that process of asking for a note from a doctor for an accommodation... it brings out the elephant in the room, especially to the person, who starts wondering why those without disabilities don't see the elephant, and don't appreciate the fact that they can wear boots and tromp through the snow, take the sled and sled with their kids, and make snow angels with the ability to stand up afterward. Those realizations come to the front of everything and hurt. The realizations hurt more than the elephant in the room, which is already forcing the person inside. To work from home could relieve realizations a bit - all those things where there were limits could be temporarily placed to the side, due to work, at least for a bit.

Unemployment of people with disabilities is the highest of any "group." In addition, the participation rate for people with disabilities is extremely low, not even close to other groups. That all means that of the approximately 20 percent of people with disabilities who want to work (compared to the 70 percent of people without disabilities who want to work), they still face the highest unemployment rate. Think about it. For a person with a disability in the first situation, they're probably happy and want to work. In the second case, where common sense was applied, I'd guess they still want to work. For the last situation, where they had to request a formal accommodation, my guess is it wasn't the first time. My guess is that at some point it gets old. My other guess, and it's a guess, is that more is happening there.

There has to be more going on in that last situation. It just seems so strange. What should the person do? How long is it worth it to fight? Has the person been fighting their whole life, like Belafonte did, and has it become more of their life than other aspects? "Don't let them get you. You fight." Protest, sorrow, and hope - how long? Belafonte stuck to his fight. If we're at a 20% partipation rate, I'm guessing many have given up the fight. And for those of us still in that 20%? I hope we continue to fight, and help others to fight, just as Belafonte did.

It takes a village to create significant change.

Peace.

I wonder as I wander

2012-02-03T21:41:00.000-07:00

It's time to start moving more! I saw my rehab doc and my orthopedic surgeon (from shoulder surgery 2 years ago since my shoulder still hurts) last week, and then got evaluated for a Bioness (more later) this week. These appointments each had various parts that were funny (or are funny looking back). Now I'm feeling a bit stranded due to a snowstorm, but this is Colorado and the snow could melt in a day or two.

So wondering and I'm wandering (ie thinking as I'm slowly walking places)

I went to see my rehab doc, who is awesome, because I want to figure out my standing issue - I can't straight. So he gave me a demo - it's all my hip flexor muscles that are tight from sitting. And the demo made me laugh - I know what I look like - to see him show me why I do what I do in the form of a demo was a bit funny. "See, if you have tight hip flexors, this is what happens when you stand." Visualize a person standing with arched back and butt pointed back. But what about the braces - do they make sense? And why, when I have the worst leg spasms at night, does prednisone give me relief. When I take prednisone, there's a wonderful feeling when I wake up that my legs are very calm. And with prednisone I can sleep, which seems the opposite of prednisone. But he thought he could explain this. I forgot to tell him of my strange milk addiction with Ampyra. I love milk!

Next stop - orthopedic surgeon. I was so happy he had relocated to a smaller building because that meant less walking for me, right? Wrong! After I was called back to a room, I was warned it was a long walk back to the room where I would be seen. Then I saw the surgeon who said, "I notice you bend over a bit when you walk." Really - you think? I had hoped he wouldn't have seen me walking in - he must be a good spy on his patients. I used to think he could only think about shoulders. But I have discovered he has a personality! Before I had surgery, he told me "No one has ever died on my operating table," so after surgery I was sure to point out that I was still alive. He laughed. This time he told me the only way my shoulder will get better is to move everything down at home so I'm not reaching up. And then he got so excited about a pole to help blow dry hair that he launched into an Internet search. He may be an awesome surgeon, but he can't type. That was fun to watch - the typing to search for hair dryer holders. He should stick with shoulder surgery.

Lastly, the Bioness... last summer someone told me I couldn't do it because my foot wasn't pushing hard enough to trigger the sensor, which is something small that goes under the foot. But this time was different. One device is a cuff that goes right below the knee. The other device, brand new this fall, goes above the knee. The lower device tells the foot to pick up. The upper device helps the whole leg lit by triggering hamstring muscles. www.bioness.com I was walking without locking my right knee which is strange, and I was standing straighter. The braces I have help, but they do not rehabilitate. By triggering muscles and nerves repeatedly, the Bioness can help improve function. It's very exciting.

So what did I hope from wondering and wandering through these appointments? I'm searching to maximize abilities... to walk more, faster, and straighter. I'm wondering if my shoulder will improve. I'm wondering, as I wander, if my shoulder will get better. And I'm asking, God, are you there?

In a strange moment after these appointments, while I was sitting as assisting minister, James Hersch was singing "Be Still." I that moment, I was still, and a presence told me that in the midst of all this activity and chaos elsewhere in life, there is peace. Our intern pastor said that. In the midst of chaos, I felt peace.

God will be with me through all this stuff, and all the other chaos in life. There has to be peace.

Be still.

Peace.

What's your story?

2012-01-26T20:30:00.000-07:00

At a highway exit, he stands with his sign, nowhere near a shelter, on Christmas Eve.

What is his story?

Yesterday I headed downtown. All along the way, I saw men holding signs.

They did not give up. Each time the light turned, there was a new group of cars offering them hope.

As the light cycle ended, they would drop their sign, seemingly in defeat.

One had a limp. Is it real? What is his story?

I am told that many have disabilities, that in the line for food, they talk about how their disability landed them in the food line. What are those stories?

Yesterday they seemed to only have one extra coat and their sign. Where were the rest of their belongings? Do they have anything? Where are their families? What are their stories?

If I gave them a dollar, what would they do with it? What if I gave them $100? What would they do with it?

What are their stories?

Some people say that we need to hold these people accountable.

Do people who say that know the stories of people on the corners?

If people are on the corner, do they have any resources? If they have no resources then how can they begin to be accountable?

Where could we start? How did they get there? What are their stories? Is anyone willing to listen?

If they messed up and landed on the corner with nothing, how can we hold them accountable for messing up when they now have nothing? And what is their story?

If they are there out of plain bad luck, then what accountability do we demand? What's the story?

If they are there because of addiction, is it our place to judge that they should be held accountable? What's the story?

Do people on corners know much different, or has this been their way of life, and the way of life for those before them (ie generational poverty)? What is their story?

Have people who want accountability ever been out there? Have they heard stories? Then in some way, these people who want accountability from those who have nothing... don't they have accountability to listen to the stories and to know why people are on the corners? Are the people demanding accountability, accountable?

And in this whole circle of accountability and stories, does anyone have

Peace?

Songs that change

2012-01-20T22:08:00.000-07:00

Every year a man named James Hersch comes to our church to do a concert and then sings at and between services on Sunday mornings. If you live in the Denver area, it's at Holy Love Lutheran Church, 2410 S. Chambers Rd. in Aurora... Sat, Jan 28th at 7:30pm and Sunday, Jan 29th at 8:30am, 11am, and between the two services. Advertisement: check.

I found some old CDs in my huge van recently and one has some of his songs. I was listening to them this week - they're the type of songs that may have a different meaning for each person. What I realized this week is that the meaning of the songs can also change for each person, depending on what is happening in life.

On one CD, the song "The River Flows" hit me in a different way. I love to watch streams and how they flow... the song says "It's the hand of God that pulls that river; it's the hand of God that makes that change... but no one knows where the river flows." The river is always changing - I used to think of adapting to the changes in MS, where the rocks are the obstacles imposed by MS. But no one knows where the river flows, so right now it's flowing smoothly.

Then I ran across another CD entitled "Worship Songs" (note: not all of his songs are religious). I had forgotten these songs. It has a song about "the water runs through you," which tells me to follow my heart. In the middle, a song called "Be Still" came on. It's a song about somewhat making deals with God - not bad deals - "I said give me strength, and I will do your will..." but ends each section with "Be Still," says the Lord. That really hit me. To be still can change so much based on life's cirsumstances, but I've made a decision and I'm ready to go! I'm ready! But as I ask God in more subtle ways than "give me this," God says "all good things come to those who wait, but here I am, trying to make a deal. Waiting on the good things is not an easy task, won't you teach me to be still." And while being still at one point might have been waiting for a new MS medication, now the meaning has changed. I'm ready to go, but... be still.

In so many areas of life we rush, here and there, chasing dreams. But taking those moments to be still allows reflection, before we launch out into whatever awaits us. And what awaits us is always changing. Be still.

Peace.

Hello and Goodbye

2012-01-13T18:57:00.000-07:00

People at our church have been talking about how we welcome visitors, or people who are new to our church. At the same time, people ask why some people have left. And so I've been thinking about these things on so many different levels - how we are welcomed wherever we go (the hello), why we choose to stay, and why we may decide to leave, or decide not to return. This broadens past church and may include a coffee store, a school, any organization, work - really anywhere. Why do we choose to go, to stay, and sometimes to leave?

For church I chose to go because it was near where I lived at the time. I was going to a lot of churches. I kept going back because something resonated with me - it honestly wasn't the members mainly because I thought you went to church just to go, listen, and leave. I liked the services and the sermons left me with a message that stayed with me. But a major part of why I chose to go was because the church was accessible for what I needed (everyone with a disability is different in what they need), even though I could walk using a walking stick. The church wasn't HUGE - at a time when all new churches seem HUGE. The sanctuary was more broad than lengthy and it didn't have stairs. The bathroom was not a mile away from the santurary, and the parking was close to the doors of the church. And the parking lot wasn't jammed full. Yup - that stuff was important. I'm still there because there's something about it that makes me feel like it's a kind of family. Something still resonates with me; my daughter loves it there; it's the place where I've found peace and help when I've been at very low points. The services are still good and the sermons still stick. Perhaps I can imagine why people might leave, but I feel like instead of saying what bothers them and discussing it, they just leave. That's up to them, but it's not what I would do. Regardless, I suppose the point is that something makes some people say goodbye - well, they leave.

The hello/goodbye thoughts started at church but now almost wherever I go, I think about hello and goodbye. For example, my daughter and I were at an outdoor mall (where the stores are indoor). We parked at the bookstore and I planned to go to the eyeglass store and then back to the bookstore, so parking was convenient. Wrong. Everytime I found a curbcut, the sidewalk seemed to lead to a curb with no curbcut. It was cold. I was frustrated and angry. This would be so easy for anyone else. Rather than an easy, shorter path between stores, this was the longest possible route. Employees at the eyeglass store, when we eventually got there, were nice. But then getting to the bookstore - the ramp was off to the side; inside the store the Starbucks was elevated and the ramp was to the side. I could understand if the stores were old, but this was a pretty new mall and a pretty new bookstore. And it may seem no big deal to those without mobility issues that those with mobility issues have to go around and up different entrances, but it's annoying... think of it as separate but equal - does that ever work? It's the opposite of welcoming - we'll go back to pick up glasses, but that's it for this mall. Hello, and goodbye. I want to go in the same entrances as others. I don't want to have to go further. So goodbye. There are other places.

Wherever one goes, subconsciously there is a hello/stay/goodbye sequence. For work, a person searches for a job and part of this involves whether they feel welcomed, unless they are desperate. They then stay for at least a little while. Then there are crossroads where employees decide to stay or go. Part of this involves whether the place they work is still welcoming. Wherever I go, I also contemplate whether employees seem happy, and if so, why. People may choose to leave where they work for many reasons, but it's still about continuing to feel welcomed, or valued. or appreciated. If they lose these, they may say goodbye.

So looking at these things and thinking of other places, what is it that makes people say hello and then stay, but also say goodbye? What I do know is this. I think to welcome people, there has to be an environment where people are happy and want to stay. So people at any church have to be happy and then that will show and new people will feel welcomed. Other places have to be set up to be welcoming before people arrive, not after people get frustrated and have left. Employees have to be happy - then new employees feel welcomed and stay - this welcoming can then be felt by customers who feel welcomed and want to stay. It's not just one thing anywhere - it's a series of related things that create welcoming and staying. I think, in this economy, it's rare that it all works. When it has worked more commonly in the past, it has been beautiful. But I also don't think we need a good economy for "welcoming" and "staying" to work. And it is there, I suppose, where I get stuck on how we do that in more places than just a few.

Peace.

The impossible

2012-01-08T22:06:00.000-07:00

Today the Broncos won a playoff game. They weren't supposed to win 8 games this season. They weren't supposed to make the playoffs. They weren't supposed to win their division.

Hang on. This blog isn't about the Broncos. It's supposed to be about MS and faith.

There are so many "weren't supposed to" things out there and the commentators being amazed at the Broncos, in a strange way, reminds me about the "weren't supposed to" things in my own life.

When I ran cross country in high school, our team was not supposed to win State when I was a junior. We weren't even on the radar. But we won. The next year, we weren't supposed to lose. There was no way anyone could beat us. But we "lost" - we got third in State. To many teams, third would be a great accomplishment. But to our team, we felt we were horrible. It was a horrible defeat and we responded to so many "WHAT HAPPENED?" questions. When I look back, I was struggling with the beginnings of MS and no one, including me, had any idea. Others on our team were injured.

Hang on. This blog isn't about my former running days. It's supposed to be about MS and faith. I'm getting closer!

I wasn't supposed to get my Masters. I had already quit one program. But after 4.5 years, I finished. I wasn't supposed to finish because I was a mom, married, kid, .........., MS. I finished.

This is about MS. Faith is coming...

I wasn't supposed to walk across the stage to receive my degree. Of all the impossible, that probably trumps everything. Just that week, I received a new brace for my left leg, which allows me to lift my left foot. If you stub your left toe with each step, you can't walk up a ramp to get to the stage, to walk across the stage. So, new brace and Ampyra - up the ramp and across the stage I went... with faith!

It was comical. The school that went before my school was smaller than I expected. They were at the ramp, and then they were going, going, and I was sitting, sitting, suddenly realizing they were disappearing. I took off, wheeling to the start of the ramp, where my walker was. And the other school was... gone! And I panicked, and the guy who works with people with disabilities told me not to worry, but that didn't matter. I got up, and I moved it!

The problem was that my already bent over somewhat ridiculous walking was replaced by me trying to get up that ramp and onto the stage. Any thoughts of trying to stand straight were gone. There was a card with my name that kept falling off my walker. Finally I made it; the lady who read my name grabbed the card on my queue, and announced "Beth Newsom."

I was all smiles. Totally bent over - think of those puppets from the Nutcracker. My picture was taken - I received it and I was all smiles.

My husband taped the big screen version. As he said, I got the most screen time. There's the camera focused on the ramp, with seemingly no one coming. Then it pans to the President talking to the Chancellor, and they're wondering what is happening and somewhat smiling. And then this woman begins to appear. There's a woman who looks really happy, bent over a walker and swinging her legs. "Beth Newsom."

That's the impossible. That wasn't supposed to happen. But it did.

The Broncos weren't supposed to do a lot.

But they did.

Faith did not give the Broncos unexpected victory.

Faith did not give me the ability to walk up the ramp and across the stage.

But faith means God is there always, through the good and the bad. Perhaps faith is shown outwardly more when there is success. But faith, like God, is always there, for many.

Peace.

Possibilities

2012-01-01T15:22:00.000-07:00

It's that time of year to make resolutions. Some years I make them; other years I don't. Last year I made "concept" resolutions. If a person is really bored, they could look them up as a blog on Dec 30 last year, but let me say, they are not that exciting. Even though they weren't exciting, I lived by them.

This year, resolutions seem strange - I'm at a point in my life at which I don't know what will happen, so I want to be open to everything.

Last year I made some kind of resolution about trying to do as much physically as I could, and I went throughout the year going to physical therapy (PT) each week, doing exercises, and continuing to walk more and get stronger. "Motivation is what gets you started; habit is what keeps you going." That's what happened. And though someone told me that improvements when on Ampyra stop at about 5 months, I'm about a year and a half out and still getting stronger. I wish I could make a resolution that I will stand without holding onto something, or that I will take a few steps without my walker. But I can't do that - it's beyond my control. I can continue to work at things and hope - before Ampyra, I was told I had no hip flexor muscles; then I was told I had "very weak" hip flexor muscles, and now I'm told I have "weak" hip flexor muscles. I think those muscles are the biggest broken link, so rather than a resolution, I see possibilities of strengthening them. I know I'm getting stronger still because other people notice things, or in moments of frustration, I do things like grab the whole main part of my wheelchair with one hand and fling it, hard, from the car to the ground, and then think "Um, wow, ok, I had no idea I had the strength to do that. I was pretty sure I needed both hands and slow motion." Grin.

Last year I made a resolution to finish my masters degree in public administration (think MBA but in the public sector which translates to government and non-profit). I also told a bunch of people I would finish it. In a sense, I needed to do that as an extra push to finish. I couldn't say "I didn't finish" after I told so many people I would finish. Sometimes it takes proclaiming something for me to get it done. Maybe I should proclaim I will clean our office this year. No, no, no - I'm not sure that will get done. But getting my masters - that opens possibilities. I've learned so much - the possibilities are seeing things a bit differently than before I started; the possibilities mean that things that were under the surface as important to me (that I didn't recognize) surfaced through the seemingly endless number of papers I wrote; the possibilities mean realizing I finished and that I can accomplish what I thought was impossible, and I suppose this ties back to the physical stuff - one just never knows what is out there, and how far one can go. Last week someone told me I have the passion for something, the ability to network and then utilize that networking to make good things happen, and something else... wow - so someone actually noticed these things about me? That's possibility.

Lastly, I made some resolution about God. Since it was a concept I don't remember exactly how it went. While I wish I had more silent times last year, it was a tough year where I seemed to work, study, and sleep in a continuous cycle. But in this cycle, and in difficult (and good!) parts of last year, I talked to God. James Hersch wrote a song about just laying it all out there for God and I did that, many times. God, you must be kidding me - seriously, now? this? Oh wait, thanks, this is amazing, can it continue? But this and that - together - does everything good and bad have to come my way at the same time? Yes, I let God know what I thought, and I did plenty of asking for help through a bunch, good and bad. This will continue - I suppose it's somewhat of a "habit," so no resolution. But the possibilities - I made it through last year - all the ups and downs and in-betweens. God is always there, through it all.

So no resolutions - just possibilities... and if I take the possibilities and flow with them as they are part of a wide open field, there has to be happiness and

Peace.

The pink sweater

2011-12-26T09:04:00.000-07:00

My daughter was singing a brief acapella solo for the 5:30pm Christmas Eve service. She loves to sing and at almost age 9 is getting to the point where this thing called nerves is starting to develop. At home, she seems to almost always be singing something and has a great, 8 year old, voice. Our house is often filled with singing and dancing.

For this service, she was really excited to sing at first and then nerves came into play. On the day of the service, she reminded me of me, wondering why she had agreed to do this. I then tried to explain to her that if she is Ariel on Broadway, she will use a microphone and sing to many more people. Trying to reason this way never works with the third grader. "No, Ariel doesn't have a BIG microphone." Whatever. Being on Broadway, her dream, will be much easier, I'm sure. (Note sarcasm)

She was wearing a beautiful blue holiday dress and a pink sweater on top of the dress. It's not just any pink sweater - my mom, her grandma, gave it to her and she loves it. She's outgrowing it, it's looking pretty old, and at some point it may need to "disappear," but for now it keeps her safe, as if Grandma is with her when she wears it.

When I asked her if she was going to take it off to sing, she mumbled a response that included some kind of yes, but as it grew closer to when she was going to sing, I was sure the sweater would remain on. Then she would feel safe. At her age, hugs from me are no longer cool, so things like this are substitutes.

After the welcome, she had to wait a few seconds, go up to the microphone, and wait for the intro. Wearing the pink sweater, she whispered quietly to 10, glanced at me, and walked 10 feet to the microphone. She listened for the organ intro, and sang just fine. Then she returned to her seat and immediately, the pink sweater came off.

Now, if only a new pink sweater would appear... probably not, but she'll find something. And hopefully those nerves don't overtake her ever, because she really loves her performance stuff.

Peace.

A Christmas Pause

2011-12-23T19:12:00.000-07:00

Christmas is different each year...

My husband and I were talking about the Christmas right before Lori was born. We can't remember what we did or where exactly we went. We were sure it wasn't at our house because back then we had a small house, so we thought we went to both sets of parents' houses. I can't remember if we went to church that year and if so, where? I wasn't a member of the church where I am now, back then. I became a member that spring. I was still "touring churches" at that point. Starting the next year, Christmas Eve services became very important to me.

I do remember the next Christmas Eve. It was one of those rare times when my whole family was in Colorado (both of my brothers and my parents who live here all the time). That Christmas Eve, Lori was baptized (private baptism, before the service). It was important to me that as much of my family was there as possible. And everyone was there. Lori's cousin is close in age and we have pictures of them at the baptism. Most people probably forget the exact date of their kids' baptism, but we won't.

We tend to alternate Christmas visits - one year we do what I call the "tour," so we wake up, unwrap a few presents, and then do somewhat of a mad sprint to 2 other spots in Colorado which are about 2 hours from our house. I'm not a fan of the sprint, mostly because it isn't as easy for me to get around in other places. And I'm not sure everyone "gets" that, because it seems it would be easier not to have to clean your house or coordinate the food. But those things that seem easy to others - they may not be easy for me. MS gets in the way.

Last Christmas my aunt had unexpectedly just passed so many thoughts were directed to her and my cousins. As we sat in church and sang Silent Night, I thought of my grandpa - that was his favorite hymn and so it usually bring tears to my eyes and at times I get very emotional (depending on the setting of it).

This Christmas - well, it's been a strange Advent. It was mostly about me finishing graduate school. I was determined not just to finish graduate school, but to finish it well, to push all the way to the end, and to finish absolutely the best I could. That's because, I think, with many other things the goal is just to finish - just to be able to walk somewhere, just to be able to do... fill in the blank. MS can cause that "just finish it" way of doing things, but so can other things. But with my capstone project, there was more freedom - I was allowed outside any box. I finished, and I cut off so many things this fall to put everything into finishing. So I didn't just finish - it was a strong finish.

So this is sad, but in a sense Advent was in the background. The good thing is that next year it won't be! I've had this final week of Advent without school (and it seems strange!) - we have been shopping and decorating, so maybe there hasn't been as much pausing as I like to do during Advent. But I have had this week.

We'll have Christmas at our house this year. We'll go to Christmas Eve services which I love. I won't be thinking of my next class or paper. In a sense, for the first time in about 5 years, I think I can just relax this year. Maybe on Christmas, I'll finally pause, relax, and enjoy just being.

I wonder, when Christ was born, if there was any time for pausing. We should pause and await the birth. But when I think about life way back then, Mary had just delivered a baby, lots of visitors came, and so much was happening. Mary and Joseph had been traveling, so they weren't pausing. It almost seems like the mad Christmas rush, in a much different sense.

The nativity pictures make everything look so calm. I wonder, in the middle of Mary deliverying a baby, the traveling they had done, and all the visitors, if Christ came and created that "pause." It wasn't before he was born, but when he was born. Note I am not a pastor so I'm sure I'm missing some big stuff here.

But when we see the nativity scene, it seems as if it could be a pause button. Many people were moving, but Christ was calmly there, newly born. Perhaps through that, a set of "pauses" were created.

For me, maybe that pause will happen this year on Christmas. Maybe something will happen where I won't be in a rush. Maybe I will take a few moments to pause and consider Jesus, lying in a manger, calmly, entering a chaotic world as any baby might - in peace.

Peace.

Bionics

2011-12-20T10:58:00.000-07:00

There's such a mix of things going on right now - perhaps I should write about finally finishing my Masters, perhaps how much shopping I have left, ..., but I'm feeling like talking about walking again, and Ampyra. Perhaps I sound like a broken record with this stuff, but it's really amazing to me, and continues to be so.

Before I started Ampyra, I mostly used my wheelchair and had an old leg brace so I could walk as much as I could, which was not much. I was never stable really, in the sense that I am stable now. But going back to my first leg brace which gave me as much stability as I could get...

I remember when I got the old (ancient) leg brace. I definitely didn't want it. Those things are ugly. When someone came to show me one and dove right into being excited about it, I wasn't ready. I wasn't excited. To me, this just meant things were getting worse. My doctor was there and sensing this (because he is one of the very few who can sense these things), he asked me "is this ok?" That was the break I needed in the conversation that got me out of the "deer in the headlights" moment I was having. I got the brace. I put it in my closet. I was going to fight using that... thing. Yuck.

I had more and more trouble walking and started avoiding steep hills for fear of falling. One day I got the brace out of the closet and decided to try it... yuck. But wow - amazingly, it made walking easier. I went to the hill, walking my dog, and I could walk down the hill again. So I got used to the ugly brace, and it became a good thing.

When I got my wheelchair, there was a similar process. I finally decided to use it to go into work when I was pregnant and was really afraid of falling. I sent an email to our entire department to tell them of my decision and they were very supportive. And through this, I grew to like my wheelchair - I could finally go to the mall again and it was freeing.

Over many years this was the state of things - I had the leg brace which grew old, and a wheelchair (eventually I got 2 wheelchairs because a new model was better for me).

Then came Ampyra. I started walking better. I started going to physical therapy. And my therapist looked at the old leg brace and declared it didn't fit me at all anymore. Back to the doctor I went to get a new brace and someone apologized that the brace was 9 years old - apparently they are supposed to last 2 years or so.

This time it was different - instead of looking at a brace as a negative, I couldn't wait to get a brace that would help me - but I do have to say the new brace wasn't quite as ugly. I kept going to physical therapy and started using a brace for the other leg there. It seemed to really help, and soon my therapist thought I should get a brace for my left leg. And now that times are different, I was excited! This brace would help me walk better. The yuck reaction was replaced by wondering if I could go further and faster.

The new brace definitely helps me to walk better - it helps me lift my toe. Walking feels so much smoother. It's winter, so people can't see, but I laugh about the summer. It's going to look really ridiculous when I wear shorts. But, hopefully I'll still be walking better. I feel like a bionic person. There are a few things that are a bit more difficult - getting up is one. It's hard to explain nuances of braces. With the left brace I can lock my knee; with the right brace I really can't and I've decided I should really have what I have on the left on the right as well.

So this past weekend I graduated. In the week before that, the brace was new. I was walking a ton. I walked to a concert, up a long hill. I walked, for the first time, into my daughter's school (it has a huge hill to get into it). All the kids stared and finally one asked me _what_ I was doing. When I told him my legs don't work right, he smiled and said without pause, "it looks like you are dancing."

This past weekend was graduation. I had a goal. I wanted to walk across the stage. Without the new brace I couldn't have done it because there was a huge ramp. But I did it. I did get very nervous, afraid of holding everyone up, and so it wasn't a good show, but I made it.

A long time ago when I decided not to go on another medicine, our pastor, who knew I was having trouble deciding what to do, asked me what I was going to do. I thought and then said I was going to wait. And I thought to myself that I really hoped something else came along. Well, it did. This stuff doesn't happen with everyone - waiting and then something good unexpectedly happening. But it did, bionics and all.

Peace.

Receive, find, open, and hope...

2011-12-06T19:08:00.000-07:00

"So I say to you, ask, and it will be given you; search, and you will find; knock, and the door will be opened for you. For everyone who asks receives, and everyone who searches finds, and for everyone who knocks, the door will be opened."
- Luke 11:9

The hymn that goes with this verse - I love it. It's really simple. It's also really beautiful.

This entry is going to use that verse and hymn; it's about education - some about me finishing my Masters after 4.5 years... one class at a time. But the verse - ask, search, knock - receive, find, open - has nothing to do in the Bible with me going through school, but this process of school - I have felt as if I have asked, searched, knocked, and then received, found, and opened. No matter what happens now, there's an open door.

In the midst of finishing this thing, I got to start on Ampyra, so I am stronger, can figure things out. Like the baby that discovers its body parts relate together - that hands go together and work together - I have found that if I think, and then believe (equally as important), and then think again, body parts work together. If one foot slides into what used to be a fall, the other foot can hold, and when I then process things right, I can tell the foot that slid to come back, and it moves. If the walker goes too fast, I can process and pull it back. None of this is automatic, but it is happening.

So school has taught so much and I have gained strength. I have a supportive family who loves me. But nothing is perfect and the whole process has not been one of joy. As I look at a fairly recent timeline, I see change. I see me saying "this is not right" and then in return, looking like I was wrong. I see being told that things that were told to me are not going to happen. I see someone thinking they were going to help by also speaking up to say this is not right. I see myself then being forced through a process to verify for others that they must be right. I see me struggling to continue to hold everything together. I see myself continuing to live with similar behavior which is being made to look justified when in reality, it is pushing me back. But I'm continuing. Others attempt payback for something I did - except I don't know what I did. But I do know that I will continue. And I know that in these very difficult spots in life, I can still move forward. I can get my Masters. I can get stronger. These are the things that matter.

People ask what is next. I have many thoughts. But what I want now are 2 things. I want family and to be a mom - to be with Lori and not into a book or paper. And I want to continue to get stronger. I want to push the limits of therapy and see if I can get even stronger and make more of those connections work. I want the top half of my body to realize it's connected to the bottom half. Then I could stand straight.

There's a third thing I have that I want to continue: hope.
"Hope prevents us from clinging to what we have and frees us to move away from the safe place and enter unknown and fearful territory."
- Henri J.M. Nouwen

That's going to help me get from what seems safe (but is not) to the unknown and fearful (which is better and probably safe).

And so with all this, I celebrate something I never thought would happen. I can't wait to cross the stage.

Peace.

Ever in my heart

2011-11-22T16:07:00.000-07:00

I'm a cat person - there's no doubt about it. There's something about a cat - things go according to their terms - and you have to play by their rules. And those rules are never clear or necessarily logical. But I love cats.

Our cat who we lost yesterday was named Mikaela. We called her "Boo Boo" because when she was younger, she liked to play a semi-hide and seek game - I am even looking at a picture as proof. We never thought she would make it to 15. 4.5 years ago when we were on vacation, she went into acute renal failure, and the vet kept her alive until we drove like heck home to see her. And so these 4.5 years were a gift, but with pets, well, it always seems too soon...

Boo Boo was found by a farmer along the side of the road in Minnesota, where I lived for about 3 years. A woman kept her until the right person came looking for a cat, and that was me. When I first saw her she was hanging out by a stream on the farm. She was only 6 months old and still very much a kitten. She was unique, but so are all cats. I lived in a townhouse and the owner didn't want cats wandering outside, so yes, she got used to being on a leash. She didn't need the leash when we would walk down the street to get the mail together. On her terms we got the mail together - she meandered along, but still was there with me. There was a field next to the townhouses; she would go hide there and I would try to find her (when she was illegally off leash). Later in life she would follow along when I walked the dog, in a cat way, off to the side a bit, but she was fully aware exactly where we were.

She was trained! When I would say "Show me stretchy," she would roll over and extend her long body as far as she could in a stretch. My husband trained her to do this "dolphin" move. You could hold out your hand and she would jump to reach it. She learned to hop on the sink and then request a drink; when she could no longer jump that high she would show up in the bathroom, meow, and announce it was time to lift her up.

She accompanied me on a trip to Colorado from Minnesota. I drove the 14 hours and she sat on my lap through a nasty ice storm in Nebraska. She was the calming force. When I moved back to Colorado, my mom and I were trying to find a hotel and none took pets. So my mom wrapped her in a blanket, climbed the stairs by the office, flung open the door to our room, and flung the cat inside. So back to Colorado went the cat, the goldfish, the plants, and me.

Back in Colorado, I got a tiny 1 bedroom apartment which is where I met my husband, Dave - he lived next door. Denver - apartments - parking lots - eeks! I would let her outside on her leash - she always loved the outside. I find it amazing that, after discovering I put my cat on a leash outside my apartment, Dave still dated me! Animal lovers...

Unlike most cats, Boo Boo didn't mind kids. When we moved into a house, kids would walk by our house on the way home from school. They would see Boo Boo and run toward her. Rather than run away, she would flop on the ground and let them pet her.

She also toured the neighborhood, jumping over fences and sitting on neighbors' porches. She would always return as if, no big deal - she had a cat door.

She adapted to my MS in a way that only a cat could. She "stole" the wheelchair! When it wasn't occupied, she would find it. The cat knew comfort! When I didn't feel well, she would just show up, as if to say, it's time for you to rest and me to sit on your lap and keep warm.

That cat went through a lot - moving from Minnesota to Colorado, then from one apartment to another, then a house, then came a baby, then another house! She traveled! After she was initially sick, she still played. She always loved to be outside. This past summer, when it was really hot, she wanted to spend the whole day outside and Dave and Lori would have to find her at night because she just wanted to stay out.

So there are fond memories of Boo Boo. "The end" is not what I want to remember - it wasn't pretty - she was a fighter. But her final sigh told me it's ok, thank you for being with me, and there are no more needle sticks, no more attempts to get me to eat, no more distress... there is now peace.

I want to remember all the good times... the times when she wasn't sure if she wanted in or out - that quirky nature of a cat. There are so many good memories.

This morning, I went to my weekly physical therapy. This seems odd to me - it seems like I should have stayed in bed. But I went. I walked a half mile on the assisted gait treadmill - that's a first. A half mile when I used to only be able to walk 50 or so feet?

Last Sunday someone said that no matter what the tragedy, we can find good in it. I'm not sure how to connect this to wonderful Boo Boo, but in perhaps that walk was some kind of tribute. A walking tribute, from our trips to the mailbox, our walks with the dog, ... half a mile.

And so Boo Boo, you gave me love, and trust, and joy, and though you are no longer by my side, your gifts remain and I have you ever in my heart.

Peace.

Blowing the whistle

2011-11-11T21:04:00.000-07:00

I've been somewhat paying attention to this whole Penn State thing, although everything is limited for the next 2.5 weeks, until my Masters is finished!

I find something interesting - the person who initially saw this illegal thing happen should have blown the whistle and called the police (say many people apparently) and now this person is getting death threats. I'm told he was a grad student then and called his dad who called or talked to someone else who talked to someone else who... it seems to go on and on and nothing is done.

And that person at the very bottom who saw this horrible thing, has and will carry it with him forever.

Regardless of what the thing is, and whether it's illegal or not, and whether that (legality) is questionable - when at the bottom of everything, it's a bit different, and I wonder if all these people judging the person at the bottom have ever been there.

I wonder how many people have been at the bottom and wondered what to do, and not known, and carry this with them. I bet there are a bunch of us. So now you know I, along with many, carry something. It's not to the same degree at all, but I live with it each day, as has that person, for years.

Something happened to me and I told a person of more authority who I trusted. This sounds similar. And that person said we'll address this, but let's just keep this here and not get too many people involved. Hmmm... sounding similar. The person of trust - we kept it small - and it follows me, a lot, though I did hand that over to God in the mountains over Labor Day weekend so it's not as bad.

But the fact is, even though it's nothing illegal, I went somewhere after the whole thing occurred and I was told by someone who knew nothing about my story, a person who was giving general advice - she said, "if someone says to keep this here and not get too many people involved, then that's a big red flag to get someone involved." Gulp. Oops? It's so difficult - on the bottom of the totem pole, told something will be addressed --> it isn't. At the bottom of the totem pole, does one just skip to another entity? No - it's frightening. Even when told about the red flag, it seems too late.

And so I have this with me forever. Something happened. It probably has happened to others. It will happen to others, because it was kept so small. And these others - my heart breaks for them.

If anything does ever happen, where am I? Will I be blamed?

And my little scenerio is not dealing with the law, although maybe it is.

So that person at the bottom at Penn State, I think he did what he could, at his age, his level of authority. He's carried this in silence and now will carry it while being criticized, forever.

Peace.

When it rains, it pours

2011-11-08T23:00:00.000-07:00

Sure, I can take anything. I made it through the hottest August ever. I haven't been sick in forever... Sure, certain parts of life have been hard, but I have "the Ampyra effect" going on, so I can handle anything, right? That is quite the attitude!

I was headed into the final weekend before the big draft of my capstone was due (yesterday). In 3 weeks, I plan to be done!

On Friday as part of my capstone project, I pretended to revert back to a programmer and programmed and programmed and programmed until I showed the data that I could handle it! Back in my programming days, I was very good. I think people thought I was better than I really was, but so be it. On Friday, I was in charge. There were 2.5 more days to bring everything together, somewhat (it's still a draft).

Then came Saturday. Surely, when I woke up hot and was slow it was due to the fuzzy red top being too much. Where were my feet? I couldn't really feel them although it felt like a bit of a fire where I thought they were. I started to work. Then one hand got cold and then I couldn't really feel either one. It's really hard to type with one cold hand and both numb.

And then everything came to the same temperature. I somewhat felt my feet. My hands were numb, but I was very warm. And then I was cold. Then I settled with warm and decided to stand to get a Cherry Coke. I got up, but then proceeded to almost do the splits in not staying up, and at my age with no flexibility - ouch!

Reality - I had a fever. I finally figured it out. And I was not in charge.

And yet, I still needed to do a few things. When on the floor, getting into my wheelchair, normally no big deal, was hard and I felt like I was sweating profusely. Everything was a battle. I finally settled on the couch, my husband brought me soup, something was on TV, and I was semi-awake.

Somehow the draft was finished by the due date (but I was just looking at it and there are plenty of typos).

On Sunday I could at least get up. I could do the basics of moving.

On Monday, I was almost back, but I had to watch my energy.

And so, I was reminded that I'm not in charge, that rest is essential. It's strange because instead of listening to the call to rest, I wanted to be in charge - this is my life!

Now I remember what it's like to have a fever with MS. It's horrible. Even a small fever like that takes me and flings me to the ground, daring me to try to get up, to sit, to attempt to stand, when I cannot.

I really dislike when people seem to think it's the same as when they, without MS, get a fever. It's not. It's throw me down, leave me on the floor, dangerous stuff where I could land in a hospital. I don't think people realize that's how it really is.

I now remember the MS fever, and am so thankful it didn't last long. But when these things happen, wouldn't it help to let go of control, to hand things to God, to let go of how the paper would get done, to rest?

Because of course, God is there, and there is...

Peace.

Food for Thought

2011-10-30T22:23:00.000-06:00

It's not a topic I discuss much. It's complicated. I wonder if there are any women who have not struggled with it to some degree, at some point in life. Food, that is. And what a strange time to think of this - Halloween!

In high school - that's when I think I first struggled with food, thinking that if I was thinner, I could be faster, that the people who were faster than me were faster beccause they were thinner. This thought that thinner=faster continued at the beginning of college, but then changed. It became, well, I must be having trouble running because I need to lose weight. And then I was diagnosed with MS which changed everything. I have MS - I can eat! And I ate. I thought about food all the time. It consumed me - those thoughts. I weighed at least 25 pounds more than I do now. I ate and ate and ate!

I moved back to Colorado at age 25. Things seemed to calm. I met Dave and found balance. Food no longer consumed me. Everything was fine. Strange to think I had trouble before.

And then - I had a reaction to a medication which caused severe depression. While I noticed something was wrong right away and got help, it took awhile to recover. I hope I never feel that way again. I felt fragile. Everything was overwhelming, including food. If a big plate of food was put in front of me, I would freeze. I couldn't eat any of it. It was too much. I recovered in other areas, but food is still somewhat of an issue. Put a big plate of food in front of me and it causes a strange reaction - wow - this is too much for me.

Then I started Ampyra which has the side affect of making me feel nauseous for most of the day and unable to eat as a result. I sit at my desk at work and work on little bites of things all day long.

This past week, I had breakfast with a friend. I ordered french toast, but oh my - there were 4 pieces. Wasn't there a 2 piece option? The server brought the enormous plate with 4 pieces of french toast and a huge mound of strawberries on top.

My stomach and mind froze. I couldn't eat more than 3 bites of it. I took the rest in a box and snacked on it throughout the day. The big plate was simply too much. Ampyra mostly does this with food. If I needed to lost weight, it would be great for that.

What is great about Halloween candy is that it comes in small packages. I can handle that. Piece by piece I might just eat the whole bag.

And I'll still go to eat at places and take boxes of food home for later. And everyone will say either "aren't you hungry?" or "don't you like the food?"

Maybe someday I'll fid a new balance.

Peace.

Will you ever?

2011-10-24T22:21:00.000-06:00

Someone recently asked me (and many people have asked me this) whether I think I'll ever walk without my walker.

My response?

I will never give up on my dream of running again. A counselor once, I think, wanted me to get to the point where I would be ok with not running again. But that will never happen. The walker isn't the point - if I can run with a walker, then I am running, and that is all that matters. In my dreams, there are no wheelchairs or walkers. I am walking and running. I am climbing stairs and I wake up wondering how I did that. In my dreams it is effortless. The stairs are simple.

I can visualize walking without assistance. When I'm sitting, it seems so easy.

I walk faster on the assisted treadmill now - to me, the rhythm of this new speed feels like running.

I realized something today. It was like in the old days of running. In running, I would start on a run and in the first few blocks, feel like I shouldn't continue. But I would continue. And at a certain point, I would feel the "auto-pilot" kick in, and the running would just flow, as if I could run forever.

Today, at a new, faster speed, the first few minutes were a killer and I thought there was no way I could really do that for 20 minutes. But at a certain point, something kicked in. It was a somewhat natural momentum that felt smooth, the same feeling, that I could go forever.

And so it goes. Sundays after church I used to be "done" for the day in terms of walking. But now it's just a start. And when I told my physical therapist that I hit the time I wanted on the track, she wondered how tired I was afterward and if I got sore. No soreness, and the only tiredness is feeling like I need a nap, which is different than physical tiredness.

And so the story goes and goes and goes.

Life is still difficult in other areas. But there's a hand guiding me. "Take my hand," I am told. "Relax. I am with you." It sounds so... strange.

At night, I'm doing squats. I'm doubting myself.

"Look up."

I look up. I'm fine. I continue.

Peace.

Culture

2011-10-16T17:18:00.000-06:00

Recently I was at a meeting of "leaders" of different multicultural groups. At these meetings, we do some kind of exercise sharing who we are, which may (or may not) tie to a culture. So the topic this time was on what value we remember growing up that influences who we are today.

Disability has a culture, but many people like me did not grow up with a disability. And so, thinking others would be telling somewhat according to their "culture," I had to think. "Beth, would you like to go first?" No.

So I went last. I definitely was part of a culture growing up, but it was clueless of disability. I didn't think of disability much.

The "value" I remember is this. After my first year in cross-country, where as a beginning cross-country runner I did surprisingly pretty well, my coach had a meeting with me. "Beth, you need to set some goals." What? Goals? I run; I got faster; I can be faster still. "Beth, I think you should set a goal to run under xx time." What? That's over a full minute off my fastest time this year, the year I took almost 4 minutes off my time. Over another minute? Well, ok, I'll say yes, and then I'll actually train over the summer. But I didn't think I could actually make that goal.

My coach knew. I made the goal, easily. In fact, I took 45 additional seconds off and then we won State Cross Country. No one saw it coming. Which team won? What? How? I think my coach knew we could do that.

So the value I learned is to never think that what someone thinks is impossible, is actually impossible. This has led to people in my family saying, "Never tell Beth she can't do something, because it will just give her more incentive to do it."

There's a concept of "SMART" goals where the A stands for "Attainable." I don't like that. It's more fun for the goal to be just out of reach. And although I didn't have a disability back then, I think that being taught the "value" of aiming for the seemingly impossible has helped me through so much with MS.

A long, long time ago, I thought I might work 5 more years. That was many more than 5 years ago. I'm still working. I've set a new goal that, although very easy for others to do, will be that "impossible" for me.

It's a time thing. I wonder if my coach would be ok with this goal, or maybe he'd make it lower. It's impossible. But I'll go for it, thinking of the other time I never thought I would make, cutting that extra minute off. I'm going to surprise the MS beast with this. MS thinks it's impossible. I'm going to prove MS wrong.

Peace.

To sleep, by chance to dream

2011-10-12T23:20:00.000-06:00

It's one more of those amazing, "invisible" things.

Now I lay me down to sleep...
and I'm generally up 2 or 3 hours later
and thus begin some miserable nights of dealing with leg spasms and hip pain.

But recently, I've found something new.
Turn on my side.
It used to cause leg spasms.
But now there is more peace.
There are some dreams.

I lie in that position in the morning and don't want to awake.

When I do awake and go to see my daughter, she's in that same position.

What are her dreams?

She looks very at peace.

And I've found that a bit as well, on my side...

Peace

Who we are

2011-10-09T21:29:00.000-06:00

Not too long ago someone told their story of struggling with who they were and what they wanted to do with life. They finally decided and have spent a good amount of time in school to become a certain person. But they still struggle with a defining feature of the role, something that is worn and when seen, people know who this person is. All kinds of conclusions may then be reached about the person - good, bad, whatever... It's a collar - it says the person is a pastor.

Although it's not the same at all, I've been thinking of how I am defined by my disability. The main difference is that I can't choose to make it invisible... except when I am in my car. So like a person with a collar (or it could be many professions, but mine is not a profession), when I get in my car, I immediately fling the tag somewhere in the car where it is not visible. I have no bumper stickers on my car. So I get in my car and become "anonymous" - the disability goes away. When people see me driving they won't rush to judgement about the lady with the walker. The disability vanishes.

But as soon as I exit my car, there it is! And I think I struggle then, with what I want to do with that. I've become an advocate - people with disabilities have to be their own, strong advocates if they are to "survive." I've been part of a disability association that is led jointly - where people each have a voice that is respected for its uniqueness and value. And I've become a sounding block - people call me - people with disabilities - and people have self-doubt, or they are scared, or frustrated, or mad, and they want someone who will listen to them. I give a bit of advice, but mostly I listen. For some reason people will turn to me for this - I'm not sure why that happened, but it's fine.

Today in our adult "Sunday School," (lack of a better term), we were talking about our church and that although it has leaders, there is an opportunity for equal voices. The church body leads itself regardless of various titles people may have. I like that.

Getting back to our disability association / the work I've done with disability. It's important that we are like the church body. And yet we have been caught in a struggle for others to see that - an attempt to force a model on us that makes no sense, a model with hierarchy which we avoid at all costs in our association.

I now get back to what defines me - who I am. I can choose not to be a part of disability advocacy - to stay back from the things that draw me to them. Disability advocacy isn't my who life or career by any means. But I struggle with the question of whether to drop my role in the association, because of the struggle to avoid being put in a hierarchical model. And I feel torn.

Today we heard a reading that hit me and it all made sense. It's Philippians 4:8-9:
"...whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is pleasing, whatever is commendable, if there is any excellence and if there is anything worthy of praise, think about these things. Keep on doing the things that you have learned and received and heard and seen in me, and the God of peace will be with you.

And then from a prayer group I have joined where a bunch of people meet to start the day in prayer - a bunch of very diverse people - so it is unique and wonderful.. from that group came 1 Peter 3:14:
"But even if you should suffer for what is right, you are blessed. Do not fear their threats; do not be frightened."

It all somehow comes together - the collar someone is unsure they want to wear; the tag I fling off; how we, or I choose to identify myself; what my role is/what do I want to be; how should I move forward.

The answer is plainly there. What I am doing is true, honorable, just, ..., etc. I can't simply give it up, and I can't be afraid. I'll have to continue to fight against people saying we must have a hierarchy, and insist that our model, emphasizing the equal voice that is the model we use. In doing this, perhaps people will keep calling me, and I will keep listening. And I will fight through my own struggles with disability.

Peace.

The Rules

2011-10-08T21:03:00.000-06:00

I got my accessible parking tag before I needed it, although I was told to feel free to use it so I could conserve energy. I didn't use it until after I needed to use it - when I did a semi-fall and realized I was being stupid by not using it. Now that I regularly use it, I'm amazed at some of the use of tags. Then I think I'm preaching by telling people what I think, but really, this is life, and how things are in the world of truly needing accessible parking.

- If you have a tag, get out of your car, run up the stairs to the library and down, then I bet it's not your tag.

- The yellow striped lines between accessible spots... guess what? They aren't parking spaces. Isn't that amazing? I know people think why all the extra room? People think... those, those, those people - they get the close up parking AND they somehow need extra room. Yes, we need extra room. When someone needs to get a walker or wheelchair out the side of their vehicle, it does not fit without some extra room.

- Van accessible parking is generally for people who have mobility devices - that's why those spots have the yellow striped lines.

- Just like many people do in many churches, those of us who use accessible spaces, if in a specific place on a regular basis - we kind of have our regular spots. People know I park in this certain spot next to a ramp at work. I find that a bit funny.

- The spots are not drop off spots. I know - people are in a hurry. They drop off their kids and, short for time, pull into the 1 accessible spot, but just for a few minutes. There's a video showing this situation. The person who uses a chair then parks far away because there are no spots. They start wheeling into a store and the big vehicles can't see them, so they get rammed by an SUV as someone backs into them while they are wheeling into a store. So just that 1 or 2 minutes parked to drop someone off - not a good idea.

- You aren't, by law, allowed to use the tag of a relative, just because it's in the car. I think if you do that, you're lazy. I'm embarassed for you.

- Are they giving tags to everyone these days? It just seems that way. And holiday shopping hasn't started.

- If someone reads this who uses a chair, here's a tip. Often there is free valet parking for people with tags at malls and certain restaurants. I resisted this, but then one year I realized it's a good thing, especially at malls during the holidays. I need to shop!

So with this annoyed, tell people what I think blog, I think there may still be some people that think it's somehow not fair that people get these close spots with extra room. Well, it isn't fun to have whatever people have that makes them need the tags. I would love to trade MS and my tag to someone else. What I would really love to do is to park in the furthest spot in any parking lot, and walk into a store. I'd love to be able to freely climb stairs into stores. So, since I can't have any of that, can I please have just one of those spots?

Peace.

A river runs through it

2011-10-03T21:46:00.000-06:00

Just diagnosed with MS, I returned home to Colorado for spring break. I went to one of my favorite spots - a stream in a park - and just watched.

I noticed that there were times when the stream changed course or slowed, but it never stopped. I could throw a branch in the stream and it would wander, changing course, slowing, gaining momentum, or getting completely stuck. But it never gave up.

From this I took a lesson: one should not give up. For me, it's perhaps the battle with MS. I'm the little twig stuck trying to weave my way through the stream which has branches everywhere, and rarely is there an open area. It's not just the ravages of MS that are the rocks and other branches that get in the way. It's life, people, relationships, work, school, stress, and on and on. The "normal" stuff, but it's made more difficult when the stream seems to be too small at times.

This weekend my daughter and I went on a bikeride - a brief break from this last, intense, interesting semester of school.

She stopped next to a stream. There were big rocks and she could jump on them, crossing the stream, back and forth. She found her own twigs and branches and would throw them into the stream. Some would get stuck; others would continue until she could no longer see them. She enjoyed this. I enjoyed watching her freedom at throwing miscellaneous twigs and branches without a care in the world.

And we continued to ride, through the beautiful colors of the fall, through what she calls "leaf valley," under the "echo" bridge.

Life continues. It's beautiful no matter what gets in the way.

"Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid." (John 14:27)

Peace.

Freedom

2011-09-17T15:50:00.000-06:00

Recently someone told me they had read a book about a person with a brain injury (maybe a stroke) who loved to ski but couldn't. At some point, someone determined that this person could snowboard instead and it changed their life - it was freeing to them. So the person said, "I bet that's how you feel when you go skiing."

Well, sometimes... the times when everything connects and I'm cruising. But isn't that true for most people? I hurt my shoulder and had shoulder surgery over a year ago. Knowing I had a bad shoulder, I developed a habit this ski season which made my shoulder worse, so skiing became a bit frustrating although at one point, a few years ago, it was freeing.

Same thing with handcycling. It was freeing to climb a big hill near our house and then go down. I trained to climb a mountain called Vail Pass and it was freeing to fly down it. But that's how I hurt my shoulder - training to go up to Vail. So the freedom of handcycling isn't the same now - I have to be careful.

So what then is freeing now? It's about discovery - finding something new - maybe that something finds me.

For me, the something has been, probably surprising to others, more powerful than the freedom I once felt when skiing or handcycling. It's not that fast - it's not zooming down a hill. It started 2 days after I started taking Ampyra, when I could stand at 5pm talking to my mom, and my legs still worked. It resulted in a bunch of new freedoms... some would be surprised that these are more freeing than skiing or handcycling, but they are...

- Visiting Mt. Rushmore, holding binoculars steadily with both hands without losing my balance - core muscles were working. I don't think most people are quite as excited to see Mt. Rushmore. Freedom: stability.

- Frisbee! Our family had a picnic and as usual, brought the frisbee, which I usually only catch if it hits me in the stomach and accidentally lands on my lap. But this summer, I could reach for the frisbee, grab it, and not drop it. Freedom: balance.

- I go to weekly PT and walk on a special treadmill that holds my upper body. It's helped my walking. I can walk further - not pretty, but it's walking. Freedom: mobility.

- I actually have a standing frame. I have a crank and I go from sitting to standing and it holds me. Standing straight involves a ton of muscles and I took this all for granted at one point. But I'm getting better at standing straight and it feels fantastic. Freedom: getting back things once taken for granted.

So freedom, and being free. I suppose I surprise myself by saying that the most profound freedom is getting things back that I don't think I even realized I had lost. Sure, I knew I couldn't walk. But I didn't realize I wasn't sitting straight, that people can reach and catch frisbees while sitting, that I could stand much straighter.

And a really great part? When I wake up some mornings (not all mornings) and my whole body decides to do a big stretch. I stand and stretch up on my toes and feel all my muscles tense. That is incredibly freeing - simply stretching. It's as if God is saying "reach for me."

I look up. There's an invisible hand. It's guiding me through life.

Peace.

Remembering 10 years ago

2011-09-11T03:18:00.000-06:00

I've been told that with days like September 11, everyone will remember where they were when they heard, and much of the day. I think that is very true.

I was at work at a time when the work environment involved a happy, healthy yelling of information across cube walls. We worked and laughed together constantly - it was fantastic.

All of a sudden the morning of 9/11... I had just arrived to work...

2 rows down: "Oh my gosh - a plane just crashed into the World Trade Center."

Thought: See, that's why I don't like to fly - something went wrong with a plane so badly that it hit a big building.

Across from me: "It's not just one. It's 2 planes. And there's something about the Pentagon."

Thought: This is different.

Up we got, 2 of us. It was time to search for a TV! Surely our building had one. A guy and I looked everywhere. We found a TV, but it didn't get any reception. Now what?

And the day went on. I had one Internet site open, someone else had another, someone else had the radio going. And we exchanged information and "come look at this." This was done over cube walls - over the cube walls and across hallways, we communicated effectively. I called Dave and we shared our disbelief.

In the middle of the day, Steve came to report that his dad, who works in that area, is ok. That's the only person I vaguely knew there.

But we left work with images of people struggling to leave the city, on foot. It was unimagineable.

Fast forward to this past summer. A fire engulfed the area surrounding Rainbow Trails Lutheran Camp, somehow leaving the camp untouched. Now it's the green bubble in the middle of a burned area. It's amazing. Some say God stepped in to "save" the camp. But I don't think that's it. If God did that, then why didn't God save all those people who lost their lives 10 years ago?

I think there is good and evil in the world. God is with us, through it all. But God doesn't decide that Rainbow Trails should survive while the Trade Centers fall. God is with the people - the people at Rainbow Trail who were relocated for half the summer to a different camp and made it. God was with the people at the Trade Centers and others where there was a much different outcome, but so many perservered.

There were amazing firefighters and many others that were part of 9/11. They risked or lost lives. Some have longterm health problems. But thanks to so many people, 9/11 seemed to bring people together as a nation. During the fire this summer, there was a coming together for people involved with Rainbow Trails, trying to keep things going in the midst of chaos.

Now, as a nation, it often feels like we have forgotten the bonding we had after 9/11, when politicians stood united, when people really seemed to take a step back and care for each other.

As we remember on this 9/11, I wish we could remember how we came together. I wish we could come together over silly cube walls that have been made smaller and offset from each other which decreases the fantastic collaborative noise. I wish we could come together over political differences and that instead of creating division, found common ground. I wish we could remember what we all did then, and use it today. Regardless of what we choose to do, God is with us. But I think God wants the post-9/11 behavior, the (people involved with) Rainbow Trails behavior, the behavior that came with people all working together in the midst of chaos. I don't think we should need chaos to bring people together, but maybe we could use the lessons we learned there and start to apply them again. There is hope.

And though these words have a different context within the song "Someday," Rob Thomas' words hit me recently, as some kind of strange perspective of
this hope...

"Cause maybe someday
We'll figure all this out
We'll put an end to all our doubt
Try to find a way to just feel better now, and
Maybe someday we'll live our lives out loud
We'll be better off somehow
Someday..."

Peace.

Giving it to God

2011-09-05T20:11:00.000-06:00

Retreat this weekend at Rainbow Trails Lutheran camp - amazing. Could be many blog entries.

The weekend was about pausing and resting.

The final night we sat around the fire. There was a box on the outside altar. In the box were little pieces of paper where people wrote things that distracted them in life, things that were bothering them, small or large.

My little paper had about 6 things quickly scribbled. They wake me up at night. They have been consuming almost all of me. To me, they are huge; they hurt sometimes and invoke anger at other times. And they hold onto me, just as I hold onto them.

The box with a ton of little pieces of paper was thrown into the fire. And we were to try to let go. By throwing this box in the fire, we were to give these things up to God.

And I stared. I stared at the box burning. The fire circle was adjacent to a large cross which caught my eye. I looked to the cross. I looked back at the box, with a bunch of bitter and hurt feelings aimed right at that box as I just stared. I alternated - cross, intense box staring, cross, intent box staring, cross, then looking up beyond the cross, at the smoke flying past the cross, looking up, toward the shadows of clouds and bright stars shining through it all. And at some point, when I was done with this strange sequence of events, I left. I left it there.

That night, last night, was the most peaceful mental night I've had in some time.

I'm sure I'll revert back to the other nights.

But somehow, for that one night, with that sequence of events, I could somehow briefly let go and hand the whole big mess over to God. It was powerful and good, just as we are reminded that no matter what happens, God is good.

Peace of Christ.

Looking

2011-08-28T16:28:00.000-06:00

Michael J. Fox wrote a book called "Looking Up." I'm writing his Prologue from the "Beth's MS perspective," since there are so many similarities, but he has Parkinson's. People should get his book. He's more of an optimist than me, so rather than "Looking Up," I'll stick with just "Looking."

In part, it's because I've received some detailed complaining lately, and I know I do my share of complaining, but I don't complain about the daily realities of life. It's just how things are.

Prologue

20 years ago, I might have written about how I woke up one morning and my legs had a "pins and needles" sensation in them, from the waist down. 2 weeks later, it went away. The doctor thought it might be some strange virus that went away. But it was MS. I was 18.

In the intervening years, my life has seen many changes. Most mornings, for example, I wake up with full feeling in my legs - it's just that one of them is jumping and having a bit of a painful spasm that won't go away until I get up.

Technically, my body is only truly at peace when my mind is completely at rest - that is, asleep. As I awaken, my body has already gotten the news. Any chance of slipping back into sleep is lost.

Most mornings, I'm the first up. I sit up and see if my legs will swing themselves out of bed, or if I've wound them up in sheets while sleeping. I sit and consider if I am balanced. Since I've been on Ampyra, I've mostly been balanced (physically). I sit there and contemplate if I can feel my leg muscles. Over the past 2 months (except a few days last week), I can. I push up, wondering if my legs will work. They do (Ampyra), and I hold my dresser while I ask my legs to push up. Then I push up onto my toes 30 times before side-stepping to "the white chair." There I sit and lift up my foot (heel on ground) 10 times. Then I push up again to standing, to the first stop - the bathroom.

I work around things, turn the shower on, and eventually side-step into the shower. Sometimes my legs decide to spasm on and off on the way to the shower, so there is a staggered side-stepping at these times, stepping between spasms, grimacing during spasms. We have a bench so I sit there for my shower. Sometimes, my legs keep spasming so they almost throw me off the bench during the shower.

Getting dressed is interesting. I avoid clothing with too many buttons. There are too many details here, but eventually I get dressed. Then I pull on a bar to get up. Some days this is easier than others... it's done on a count... 1,2,3,4,5.

Next steps - brushing teeth and makeup. I sidestep down the long sink for this step. And then I sit, turn, and see how well I can lift each leg, 5 times each side. Therapy is a continuous thing all day for me. There are still 3 things I need to do for morning therapy: balancing exercises while sitting, bending down while sitting and then sitting up, and repeated standing at the deck railing if there is time. But I digress. It's time to leave the bathroom and get to work!

My husband is just getting up and I say goodbye to my daughter who is still in bed. I go to get in my van, lining up my feet just so and then launching myself onto the seat. I don't make it quite right, so I have to grab part of the seat and pull myself back, but I have to think to use core muscles during this or it simply won't work. When I am "in position," I grab one leg and then the other, move the seat forward, and adjust my legs so they are ok - don't want leg spasms while driving.

And then, finally, I'm off. I consider the situation as I back out. Some days I'm smiling because everything went smoothly; other days I'm not smiling. Some days I'm looking forward to what lies ahead; other days, I dread the day and what people may say or do that can cause stress and lead my body to rebel. On the good days, I can take things. On the bad days, I wonder why people seem to want to make things more difficult, as if I'm not putting 100% into almost everything I do. If they can't see the effort, perhaps they should see the process described here.

So I'm looking always looking. It's an emotional, psychological, intellectual, and spiritual outlook that has followed me throughout my life with MS. I don't feel the aching pain of loss. Physical strength, balance, manual dexterity, the freedom to do what I want when I want to do it, the confidence that I can always be there for my family and others when they need me - all of these have been, if not completely lost to MS, at least dramatically compromised.

The last almost 10 years of my life actually began with the decision to have a baby. I found myself struggling with new dynamics - could I be a parent? How could I be a good parent with MS?

The answer had to do with perspective. The only unavailable choice was whether or not to have MS. Everything else was somewhat up to me - I could concentrate on MS and the negative - rushing in with stop messages some doctors were happy to give me. Or I could just go on with my life and see how things worked out. Over the last 10 years, things have, for the most part, worked out.

For everything MS has taken, there are new directions, ways of doing things, and leaning on God that I would probably not have traveled. So, "it may be 2 steps back and 1 step forward, but after a time with (MS), I've learned that what is important is making that one step count; always looking up."

OK, Michael J. Fox, I'll look up. Now if anyone reads this, go read his book, and see what I did to his Prologue.

Peace.

Beginning the end

2011-08-21T12:28:00.000-06:00

Tomorrow I officially start "the beginning of the end."

4 years ago I started a Masters program because I was told I needed it to get further in my career. It didn't matter what the Masters was, for the most part. I just needed something.

I explored a bunch of different options - I got to choose what I wanted! I completed about 1/3 of a masters previously before I decided that statistics wasn't what I wanted. So I got to explore. I settled on Public Administration. I'm told the best way to explain it is that it's like getting an MBA, but in the public (ie non-profit/gvmt) sector. I went the route of the "MPA" because it seemed to mix a bunch of things I liked. I wondered if I should do something specific to healthcare but that seemed like it could limit me. So, class by class, one class at a time, while I work full-time and have a family (and the MS beast), I've worked through this.

Rather than being this thing I had to have to go further in my career, the education I've had has taken a life of its own. I've looked at how organizations are structured and really got to think about what works best in different scenerios. I've had some classes in policy, how policy process works, and been fascinated. With each class, there's been a ton of writing. I do love to write but there were some burn out times. And I got to research things in different ways - and the research topics have been up to me. So I've been able to do disability things, but I also go to incorporate religion. I've been able to mix a bunch of things together. I think the 4 years has shown me more of who I am, and pointed me in terms of what I want. It's taught be to embrace thinking outside the box. It's not what I expected.

What I have found is that while I focus on people with disabilities a lot, we are part of a mix. I've learned about Medicaid. I've learned about poverty - I've never been there so I can't say I understand poverty, but the overlapping combination of disability, Medicaid, and poverty is where I've found some kind of passion. And then the 3 split out as well, so there are so many angles.

Through this whole process, I've also been very active in the community in terms of people with disabilities. I network with many people which led me to learn more about Medicaid and poverty. And so I start the final semester, where I get to combine things.

I'll work with the State, looking at a federally funded program called PACE. It's for people who are over age 55, on Medicaid, and meet criteria showing they have significant disabilities, enough to be in a nursing home. But while these people could live in a nursing home, they can also choose to live independently. PACE is one way they can live independently, but also the gives them the ability to participate in a day program up to 5 days a week. They get transportation there and have access to medical specialists, activities, etc. PACE's goal is to keep people out of nursing homes, with some evidence people stay healthier and are happier that way. So I'm going to be looking into this, looking at data which tells how people are doing, and considering policy implications.

So, what started as "you need this" has transformed itself into some awesome opportunities, the ability to think outside the box, and to love learning without feeling as if my life depended on it. I think doing this while having MS has been the biggest challenge - outweighing working and family. It has not been easy. I always wanted a Masters. I thought that having MS would make that impossible.

But step by step, after 4.5 years, I'll be done. I do want more time back. But I've learned so much. My hope is that this may somehow open itself to a beautiful new park of opportunity (see previous post). I think I'm ready to continue pursuing the passions I've found.

Thanks be to God.

Peace.

You're IT!

2011-08-20T16:53:00.000-06:00

The numbers refer to people in this fun story. So think 1=Person #1, 2=Person #2, etc.

An interesting game of tag and the planning for it.

1 - "Someone has decided that you, 2, are IT."

2 - "So I assume we're playing dodgeball?"

1 - "No, this person, we'll never know who they are, said tag. And they said you are IT. They must think you can handle it. Will you be IT? We have a number of other games and different people will be asked if they will be IT for those."

2 - "Wow - I really thought this was about dodgeball which I think I like better. But I suppose I'll be IT in the game of tag, if that's what someone wanted."

1 - "Are you sure this tag game should occur? Are you sure the person really wanted a tag game? From your gut, do you think something happened causing people to have to play this tag game, where you are IT? Really, in your gut...?"

2 - "Yes, that's what they want. Tag is the game and I am IT. They are right. I just didn't want to play and be IT"

1 - "Well, what did you plan on doing about it?"

2 - "I was going to try to find a place where we don't have to play these games, because this tag game is different - it's hard and it's no fun."

1 - "OK, let me look into who else needs to play. #3 will let you know."
.............

Game begins........

3 - "OK, we're all going to play now, but what do you really want? I don't think you wanted to play tag or to be IT, so did you really want to have a big treat at Baskin Robins, or did you really want someone to say you might win at tag, so let's not even play?"

2 - (confused) - "I don't want ice cream and this whole tag thing has me confused. I'll draw you a picture. See, here's this beautiful park. I wanted everyone to get along and go there together. That's it. It's about getting along and being together."

1 - "Oh, I get it. I really do. I get it. Unfortunately, we must finish tag. You have to be IT the whole time. The people you tag - well, you're still IT and until we decide otherwise, they're still fine. But keep trying to tag them. That way, we can say we all played tag, and whoever the person is who wanted it played, maybe they'll see."

2 - "This is exhausting. Can we just not play and go to the park, even if we need to be separate?"

1 - "No, unfortunately we have to play tag."

and this goes on and on and on.

2 wants the park. 1 has been told to avoid the park at all costs, play a lot of tag, and make 2 exhausted.

4 - "Hey 2, CALL ME."

2 - ?????????? Perhaps there's a different park somewhere, waiting to be explored.

Joining the Movement

2011-08-16T22:00:00.000-06:00

"Join the Movement" is the trademark of the National MS Society. We all move in different ways, and by different means. We value any movement, and we hope that we keep being able to move, or that the ability to move, in whatever way, may somehow improve.

I've had this improvement in movement which I've never had since my MS started about 21 years ago. But yet, life goes on. MS is still MS - heat still really affects me, and stress really affects me as well. Ampyra has helped with so much, but it hasn't helped with heat tolerance. And though it has helped when faced with stress, everyone has their limits, and stress will still impact MS.

With stress, I've noticed I'm exhausted - not in the physical sense, so it's hard to explain, but it's a different type of exhaustion. I may drink more coffee to ward it off. Yesterday was spasm day - my legs jumped like they wanted to walk, which hurts and is annoying in a strange way. But today I actually took a nap! Yesterday, it seemed that within 15 minutes of sitting, my legs would spasm and I would have to get up. Today my legs ache - this dull ache - like when one has the flu, but just in my legs. I can still move. I'm still in this movement, still maintaining the same movement.

During these times, I've spent some time looking up, trying to ask God something, but I'm not sure what I'm asking. And so most of the time, I just look up. And there is a presence that will pull me through - I'm just not sure how. Times right now are hard for many people, in different ways, and we'll all be pulled through these times.

So I continue to move; I've joined the movement so I won't give up moving, even if it has to be through some spasms and pain. It's still the same movement - improving. There's just a "silent" component I'm battling. I think the "silent" components are most difficult in terms of people knowing, understanding, etc.

And when I spend the time to look up, I think God knows I should take some time in quiet, away from the chaos, to rest. I think, I hope, that taking the time out, allowing rest, will bring continued movement, but more importantly,

Peace.

Gifts

2011-08-10T19:34:00.000-06:00

They really are gifts - each one has brought joyful tears (others don't see the tears - it would ruin my "image" :) )

The gift of music.
I went to visit a friend who gave me 2 CDs - one has 100 piano pieces. I am drawn back to my days as a pianist. I started in first grade, insisting that since my older brother took lessons, I should, too! Of the 3 kids, I continued through high school, practicing about 2 hours each night my senior year. On the CD, I found pieces I had played. Chopin's "Waltz for Piano No. 1 in E flat" - it's a dance, as if doing small leaps. Debussy's "Arabesque for Piano No. 1 in G" is like gentle waves. Mozart - always my favorite - I listen to the Sonatas and remember them. Strangely, the piece by Chopin brings me to tears. An unexpected CD from a friend brought music back. MS might have taken feeling away in my fingers, but I wouldn't be as good anymore anyway. The fact I played the pieces - that can't be taken away. Nor can the emotional feeling I get from listening to them.

The gift of balance.
We went for a picnic, prepared by my 8 year old daughter. Imagine - PB&J, yogurt, salad, and juice boxes. "Let's play frisbee!" Really? Do we have to? I'll just sit there and if I'm lucky the frisbee will hit me in the stomach and bounce off. I won't catch it. But I have the gift of balance. I sit, I reach, and I don't collapse. And then... I catch the frisbee! It doesn't just bounce off me. Do we have to leave? I can catch now!

The gift of today.
14 months since steroids. We're almost through summer. I think I may make it through the heat. So today, I celebrate.

God is smiling.

Peace.

The Times of our Lives

2011-08-06T22:29:00.000-06:00

Life.

Joy. Happiness. Laughter.
Pain. Sorrow. Tears.

We all experience these. Perhaps when we share, we learn how we may be experiencing them all simultaneously.

Time with a friend.

We share accomplishments we have made in becoming physically stronger. We start with that.
Joy.

We move to other subjects. We discover that despite different lives, we're in the middle of some things we never expected. We're dealing with them. We see that there seems to be a ripple effect - one thing after another, trying to bring us down.
Pain.

We return to our accomplishments. We find similarities. We are different, yet we find that we are each becoming stronger and we each work at it. We share different versions of exercises - what was once really hard that has become easier with time.
Happiness.

We find our way back to the pain. We didn't expect this. We thought we knew people better, and we thought we could trust a bit more.
Sorrow.

Now we're back to exercise, but one person is doing a demo on the floor and I'm showing my little leg muscles and how I can kick.
Laughter.

Pain. Sorrow.
Tears. We find tears. Things hurt and we can't believe it.

Joy. Happiness. Laughter. This is the important stuff. It's important to not let the other stuff take over the best parts of life.

Two different people with different stories, each bringing with them pain, sorrow, tears, joy, happiness, and laughter.

We have been down different, yet similar roads. We struggle with the difficult. We cling to the good.

Most importantly we share.

We are not alone.

These are the times of our lives.

Peace.

Navigating

2011-08-01T22:18:00.000-06:00

This past week I went back "home," to "Ft. Fun," aka Ft. Collins, to visit. I think Ft. Collins will always be home, but the longer I’ve had MS, the more difficult it has been to go back there, to navigate things that used to be so easy – things I took for granted until they became difficult.

The last time we were there was Christmas, after I had started Ampyra, but things were (and still are) difficult. When I'm where I live now, I have routines, ways I move about my house. It’s adapted for Beth. I can walk a lot in my house. It's "easy." But when I go anywhere else, things are never easy. In certain places, I develop my own way of getting where I need to go in a routine kind of way – say at church and at work. So in those places, I can be more "functional." Functional is just that – I can function walking, and the people there generally know me and how I "operate," or maneuver around the world.

This time in Ft. Collins certain things were still very hard. We went to lunch at a place where I had to walk a bit to get there, but I did make it. Then we went "home." That's always difficult – there are 2 big steps to get inside and the steps being so big seems to be the problem. Then it's summer, so there was the combo of already walking a lot, the steps, and the heat. Somehow I, or we (team approach!) made it. It was the next day when I realized that on other trips, I had used Nemo, the wheelchair. But Nemo stayed in the car, as I (or we) found new ways to navigate.

For those who have never lost any mobility, it's interesting and fascinating when it comes back. Mobility doesn't just "Pop!" come back. Muscles come back, but using those muscles is actually different. There's a transition to learning to use those muscles, to test them, to see if they are there. So over a few days, I was testing. When it was difficult to push or pull myself up, I might have failed once. But now, I instruct myself to push on specific muscles, generally my quad muscles, to pull up. After the quad muscle, I have to think of hip muscles contracting. Otherwise my legs straighten, but I am bent and can't move.
Many times I find myself doing this – reasoning through something. There are times now when I find myself "in trouble." But then I think wait, how can I get out of this? Is a leg crossed? Can I “uncross” the leg? How? Do I need to call for help? Before Ampyra, there wasn’t time to call for help. Now my legs can hold me in an awkward position and I have a bit of time to wait… for help, or to figure it out on my own. There are times when I do have to figure things out on my own, and usually I can. It’s not graceful, but I suppose it’s a new “functional.”

So as I went through the few days, I was thankful. Yes, nothing in life is ever easy. Everything I do requires thought - a big extra step when I think of how to move.

But then I realize I can do this. I can navigate.

Life is good. We are all held and loved.

Peace.

Monstro

2011-07-16T17:00:00.000-06:00

"Beth, I have bad news for you. Your car has oil leaks everywhere and we're not sure we can get them all out. You also need an expensive new timing belt. It's just not worth fixing your car."

And so began the search for a new car. I love the Subarus, but they raised the trunks of all crossover vehicles so I couldn't lift my wheelchair in (mostly because of my defunct shoulder). So there went that solution. No crossovers? Now what? And so, someone noticed that mini-vans all have lower trunks. I don't consider myself a mini-van person, whatever that is, but as I watched mini-vans drive down the road, I just couldn't envision myself behind the wheel of one.

They don't make many mini-vans. Also, due to the tragedy in Japan, availability of everything is down due to no parts.

Down to limited choice of mini-vans, we looked at several. Was the seat too high? Did the trunk have an open and shut button (I'm still glad I cycled up Vail Pass even though now I have shoulder needs added to leg needs). Is there a handle to grab when getting in the car? We eliminated the need for 4 wheel drive. Finally we found the best option. But then there was the car dealership calling me 3 times a day. This is a problem because half the time my phone is lost and the other half of the time it's in my car and I am somewhere else. The solution: use a broker who has been recommended to you!

Found a van, then found it had hail damage. Found another van. Now I needed hand controls and the place installing them wasn't returning calls - it was strange. Finally a different place installed them.

The van was ready! Just as I received an unexpected, unrelated phone call at work, I heard rain start to come down in sheets. Maybe this van was not meant to happen. The phone call ended; the rain slowed, and finally I was off to get in my car. In the middle of the parking lot, lightening and thunder hit. The phone call threw me. But somehow I was off to get the van.

Getting the van was the easy part. Now we're figuring out how to get it in the garage because it is just huge. It's seems so big that we're naming it Monstro (the whale from Pinocchio).

But inside Monstro, life is nice. I get free satellite radio for 3 months. I found a comedy station and then hit gold - the 80s! Listening to this music, I realize it is not quite as amazing as when I was a teenager, yet I crank it up and sing. I imagine I look ridiculous going down the road like this and create comedy for anyone who looks. That's ok - I got to sing "Never Surrender" and "Give a Little Bit of Heart and Soul." I never realized how cheesy this stuff is either, but that's ok. Def Leopard has some songs. Life is good.

Monstro is just fine. But in my next life, where I am still running, I want a Smart car. Those are awesome. And who knows - I still may run so maybe I'll get Smart car too, in this life.

Peace.

Remembering Aunt Dot

2011-07-10T19:13:00.000-06:00

Today was the day of the small family service for my aunt, in Minnesota, at the gravesite of many relatives from my mom's (Holasek) side. I couldn't be there because it's too hot and humid right now - and I finally am listening to my body about heat - my body hates it. I think it's that I can't sweat, so I get in trouble. Anyway, I had my younger brother, Tom, read something. And I thought a lot about my aunt today - I still don't think it seems "real" that she is not here. Anyway... I think Tom read something like the following... (imagine long Os as part of Minnesotan accent my aunt had).

Ohhhhhhhh… Aunt Dot… it's Bethy
I have so many memories of you and it is hard to think you are not just a phone call away. It's also hard to think you may not randomly call me tonight, or that I might get something you found interesting in the mail, whether it be something on Lorie Line, on MS, on a Monet exhibit, or even something on protein powder!

The last time I emailed you I told you how wonderful my walking was, and it keeps getting better. I wish you could see it, but your spirit knows.

We had so many good times, and so many good laughs. There just weren't many sad moments with you.

You are one of the only people I know who never said a bad thing about anyone and would change the subject anytime I had something "not positive" to say.

You called me when I was in college and said, "Betheeeeeeeeeee, are you on that medicine, because I was on the same one and we are alike and I wasn’t myself when I was on it." That call came after I wasn’t myself and I WAS on that same medicine, and you were right. "Betheeeeeeeeee, you need to go off of that medicine." And so I did.

The time I spent living in Minnesota was made better by you. I got to go to your house and see Monet paintings and we would talk about them. Lorie Line – those are great memories. I would drive to Mankato for my birthday, and then you and Bill would take me to see a Lorie Line concert. And we did our annual leaf-viewing trip. And you worried about me, which runs in the family. You would call me and say “Betheeeeeeeeeeeee? This your aunt dot.” I never did tell you that the "Betheeeeeee" part gave it away. I just smiled because, well, it made me smile. I also had caller ID, so I knew when you were calling.

When Lori was born you came and rocked her endlessly, singing "How much is that doggy in the window?" Now she wants a puppy – I’m going to blame it on that song. But Lori also loves to sing, so maybe some of that came from you.

And then there was church. You had come several times to my church and finally said "Beth, you keep coming here so you should just join." And then, yes then, just as you would do or my mom would do (and now I do these types of things, too), you just walked up to someone and told them who I was and that I should join! Someday soon, Lori will hate that I do that kind of thing. But then she will do the same kind of thing at some point because it runs in the family.

And when you and my mom would get together - there was no mistaking that you were sisters! Ohhhhh yes. Sisters from Minnesoooooota who loved to laugh.

You brought a video camera to Grandpa's memorial and we have all seen it. We have seen that we would only let you capture the backs of us, and you can hear us, and you, all laughing as you try to capture someone's face. But with that camera, you captured Tim and Tom taking the "famous" red wagon down the hill, and all of us, including you, laughing. THAT is a memory to be kept!

I’m not there today, but I am there in spirit. Your spirit will be lifted even higher today. At some point, there will be laughter, and you will be there laughing too.

And maybe at some point, that red wagon will go down another steep hill.

Aunt Dot, this is Bethy. And I love you very much.

(Sniff. Miss her. Hugs to heaven.)

Peace.

A Difference of Opinions

2011-07-08T22:07:00.000-06:00

Let's call him Fred - the guy who sees me for leg braces which help me walk. I went to see him today because my PT thinks if I have a minor brace on the left, it would help. So off I went, to Fred's office, in the middle of Denver. It was 80+ degrees and the AC in his office didn't work. He was late, so I sat outside in the shade, people-watching - it's near a bus stop. In the middle of all the traffic and noise, a beautiful monarch butterfly flew effortlessly over it all - amidst the chaos, there was beauty, gracefully floating through the air.

Fred has his own brace business which he has owned for over 20 years and he knows a lot. But Fred doesn't have a disability. Fred thinks he is helpful. He is, in some ways. He knows anatomy! But I don't think he has ever asked for opinions on things, which can be just as valuable. If you want to really feel like you have a disability, Fred is your guy. To give him credit, he's trying to make life easier for people. But people are individuals. So here was the encounter we had. In parentheses is what I thought I should have said, later. I think I was tongue-tied at the time.

"Well, we have basically 2 choices, or do nothing. Now here is how you walk, so I know you are stable because you are bent over and that is how you extend your knee." Then he explained the choices - one helps lift the toes just a little while the other one lifts the toes a ton but causes the knee to give.

"But when you walk... well, let's not say it's laborious, but you expend a lot more energy than anyone else walking." Yes, I said, I burn calories! I smiled. "Yes, that's probably part of why you stay so thin." (Whatever - the new medicine means I'm not very hungry, but Fred, do you even know about the new medicine? When I talk about it, are you even listening?)...

... more explanation of various things ...

"You know Beth, I'm reading this book. Well, think of this. Some people get cancer and they decide to forgo chemo and make the most of life." I was wondering where this was going...

(Fred, first, for people with cancer, it's their choice and maybe the ones who do chemo make the most of life as well! But you're comparing that somehow to my desire to walk. You think I would enjoy life more if I gave up walking. You don't know me at all. I now realize that. To me, perhaps happiness is not doing the easiest thing, taking the easiest route. You see, I love walking. I love standing. I love feeling that I have leg muscles that work, even if it's not the same as yours. Others may love using a wheelchair. If I have a distance to go, sometimes I do, too. But happiness to me is standing. Happiness to me is walking, no matter how it looks or how slow it is. I really don't care if you approve or not. I am here about a brace.)

Things now get even more philosophical - who knew religious discussions occur at these appointments!!!

"Now Beth, I love life. But I can't wait to die."

(What?!! the... the... brace?)

"You see there are 3 important things to me. 1. God. 2. Helping others. 3. Eternity."

"You see, I know all kinds of bad things happen to people but those things are what make their lives better."

(Wait - so you think having MS makes my life better? Ummm... no. I'm sorry. It doesn't. I'd rather be walking or running. You don't know any of this because you don't have a disability!)

"If you hand things over to God, God will guide you. You see, it's not about looking in the mirror at yourself. It's about looking to God. God will show you where to go and God will help you."

(Fred, what the heck? God is with me always, but he hasn't given me an instruction book. God helps me by being there and by listening. I think God wishes I would spend more time focusing on letting him listen)

At this point I told Fred that God may not give instructions always, but once God did enter my life and told me I needed help and held me when I was deeply depressed. I don't think that's ever happened to Fred.

After a bit more, Fred got back on track and I told him I'd let him know which way I wanted to go.

I'm getting the more basic option and can order it myself.

I don't think I'll go to Fred again, but if I do, I'll take a friend!

Peace.

Accessible?

2011-07-02T16:06:00.000-06:00

We are in an era where everything is required to be accessible because of the Americans with Disabilities Act (ADA). The ADA is a fantastic piece of (bipartisan) legislation which means we have ramps to everything, we have bars in bathrooms, we have at least 1 bigger bathroom. And while all of this is nice, it can still be a difficult world to navigate. As a person who uses a walker or wheelchair, I have to evaluate how strong I feel, how far it is to a place, how big the place is, how many doors are involved and how heavy they are, etc. I even have to evaluate bathrooms, and I know which places have my favorite bathrooms! So, in a way, though at times frustrating, it can be a bit comical to look at situations. Here are some... (read this knowing it's sarcastic and not meant to be serious, even though at times, these things are serious)

- There are accessible parking spaces that are close to ramps rather than stairs. But... those ramps may be so long I think I'd rather figure out how to do the stairs. In some cases, this has to happen due to slopes (like where I go to church, but then there are 2 entrances - 1 with a long ramp and 1 without). But in other places I look and think, hmm... this really makes no sense. Wasn't the point to make things closer?

- OK, I'll go there - bathrooms. Everyone make note that the accessible stalls are almost always the furthest. This is odd. Then there are bars. Over the bars are often huge toilet paper dispensers. The point of the bar would be? I use it to lean against the wall, or the toilet dispenser (and the big dispensers make it dangerous).

- Baseball practice time! I went to the park to watch my daughter, and was ready to park next to th other cars there... wait, where's the ramp? Oh... it's way over there, in the furthest spot, and that is where they have accessible parking! And, behind each accessible spot is a dip so when I put my wheelchair together, I almost fall. There are 2 sidewalks - one seems to go where she practices, so I take that ramp. The sidewalk goes for a way and then... it ends... with no ramp. ??? :)

- I'm now an online shopper! Codes were revised so that in dressing rooms, there are no bars, which is a definite problem. Dressing rooms are now prettier... and more dangerous.

- This morning I parked at a store in an accessible spot. The ramp was at the opposite end. Since I am writing this you know no one backed over me while I wheeled by them. Then there were heavy glass doors, and I have a bad shoulder, so I was glad to see they had an auto-open feature on them. They had the blue buttons too, but once I initiate opening the door, it should react and open, which it did, halfway. OK, I'll use the button. But it's blocked by a big sign. I'd rather they get rid of all the auto features and loosen the door to not be as heavy.

- A woman using a cane had walked from 1 department store to another and was exhausted. Her husband wanted a wheelchair for her. He had seen them at the entrance. But they were all locked together.

- These could go on forever, but think of this. When you leave a bathroom, there's a spot by the door, right? People think that spot is to put a trashcan so people can put paper towels in it. That space is actually required by the ADA so someone with a wheelchair can have the angle needed to pull open the door.

What I think is that people have the best intentions. They may read a book to design something right. It may be right by the book. But what if... in addition to reading the book... they invited some people with disabilities to take a look? We did that where I work. It must have been quite a scene! But when it's all done, it will be by the book and the people involved will be happy!

And where does God come in? Well, I think God is there beside me, getting a kick out of all this, knowing I'll stubbornly figure out how to get somewhere. He has a sense of humor and is laughing. Later, I laugh too, because at times, it's just funny how things are done.

Peace.

Will you?

2011-06-27T20:44:00.000-06:00

One of the things I miss now that I've decided to walk up for Communion at church (they would bring it to me and anyone else) is usually the second hymn sung during Communion.

But I do love more that I walk up to Communion and then back to my seat (although it's slow) and am not exhausted (not being tired is the whole key to things) when I get back - actually when I return to my seat my legs are deciding they are "ready to go," but they have to wait until the end of the service. But the hymns... this Sunday it was:

Will you come and follow me if I but call your name?
Will you go where you don't know and never be the same?
Will you let my love be shown,
will you let my name be known,
will you let my love be grown in you and you in me?

I love the words and I love the flowing melody - it's like gentle waves.

Listen.

Take the road not taken and be amazed.

Go out and do good works.

Let the Three in One in.

The first line seems to be following me so much:
Will you come and follow me if I but call your name?

Be still. Listen. It's there...

Peace.

Why church?

2011-06-25T23:17:00.001-06:00

People go to church for any number of reasons. A great number of people go to church, I think, to "check the box." They "get it out of the way." They may go there to be seen. I've seen versions of going to church on resumes, sometimes as if to say "yes, I fulfill social responsibilities and am a good person." They seem to be checking some "good person" box. Not always. But...

These are not the reasons I go to church.

I definitely go to church for community. I believe we are all community there. We share many things.

But I also go searching for answers, or trying to listen because maybe I'm being told something. And it's a bit interesting because everyone might be told something a bit different in their mind, even though it's the same service, and we are all there as community.

Last Saturday, I had a vivid, strange dream. In the dream I showed up to be assisting minister. But someone else was there as assisting minister. I was treated and viewed as some kind of alien, and told I would never be assisting minister or lector again. And then... I woke up. The dream was so vivid that I had to think, did that really happen? I went to church and was the assisting minister, but I was distracted. Why the dream? I've now figured it out. It's my mind's way of taking a completely different part of my life and placing it out of context into some other part of my life.

But finding answers... where are they? Last week, the second lesson contained the words "agree with one another, live in peace; and the God of love and peace will be with you." Seriously?!! I mean, I know some people who went to church last Sunday and heard the same thing. But the thing is, maybe the God of love and peace is with them somehow, but they are not living in peace." I bet they aren't aware of this either, and I bet they didn't spend the time I did contemplating how I could live in peace right now.

Then the Gospel ends with "And remember, I am with you always, to the end of age." I got that. Check! I know Jesus is with me. Definitely - I know that. But right now I need some kind of roadmap or decision-making tree as nothing makes sense. Who to trust - what to do - what road to take - when - where - why? I think, right then, I wanted to be alone, not up front as assisting minister... just for a moment.

Near the beginning we said
"Guard us from all evil."

Then there were the hymns,
"Leaning, leaning on the everlasting arms."
I am leaning. Something is holding me up.

"Softly and tenderly Jesus is calling, calling for you and for me...
Why should we tarry when Jesus is pleading, pleading for you and for me? Why should we linger and heed not his mercies, mercies for you and for me?
Oh, for the wonderful love he has promised, promised for you and for me."
Jesus is right here, always, holding, even as I struggle to find a roadmap. He holds. Even if I ignore, he is still holding. That is remarkable. As I flounder, he is there. As I am hurt, he is there. As I cannot believe the hurt, he is there, calling, pleading, and loving.

And so it is appropriate to end the service with these words of song:
"This is my story, this is my song, praising my Savior all the day long."

At the end of the floundering and the hurt, I think I'll find my way down a new road. And Jesus will still be there, holding me.

Peace.

Sit there.

2011-06-17T22:01:00.000-06:00

It's sometimes really funny to look back on something.

"OK, Beth. Just sit there."

"Right...... there......... (on that seat thing) ???"

Imagine a narrow seat that becomes one of those adaptive exam tables. Or just imagine a chair, with a flat seat and no arm rests, just sitting in the middle of the room. That's where I was told to sit.

I froze a bit. Wait. There - that seat - no arm rests - no curvature to help with balance - just in case I didn't "stick" the landing. Ummmm...

I had already walked up to the doctor's office. There were 2 sets of elevators and a long hallway. I was strong enough to do that. Amazingly, I wasn't that tired. But this seat...

"Don't worry about it. You don't have to. It's fine." That was the nurse.

No, see now that those words were spoken, I most definitely had to.

And so... (drum roll?) ... I sat. And that was that. I stuck the landing.

I have been sticking landings when I sit, but there's always something there, just in case.

So there I was.

"You can sit back now."

Oh no, now that I have stuck this landing and am sitting here straight, I'm not going to lean back and relax.

The appointment went on - perhaps the best parts are not talking about my MS, or laughing about something, or talking about the good things that are happening where I am showing MS that I have found competition for it - the competition is winning. MS is losing.

"Hold your arms up like this." That's the doctor. What? Now I have to take my hands off my lap and let go? Strangely, I let go. Not perfect, but I did let go, on the "sit there" seat.

My daughter and I left the appointment. We took the elevators down. We went to the lab, back to the other elevators, and down to the parking. At one point I thought I should sit and have my daughter pull me.

No. If I could stick that landing, I could keep walking.

I made it to the car.

And now I know, I can sit...
there.

Peace.

Reflections on a year

2011-06-11T12:47:00.000-06:00

It's amazing to me - a year without MS attacks. When I have an MS attack, my legs collapse - I hit the floor - I'm totally exhausted. When I go on steroids I get a rush - then I get angry - it's a roller coaster ride. But now it's been a year without this. And a year without the roller coaster ride of steroids - I am grateful. It's because I'm on Ampyra - nothing else makes sense. I used to have attacks every 5 to 6 months. Given the stress I've had at different points during the last year, I should have had several attacks. I've had "off" days.

And what else? I haven't been really sick for a year. My husband got a horrendous cold. I got a very small version of it where I felt like sneezing and perhaps sneezed a few more times than I usually would. I did recently get laryngitis and a small "bug" with it, but it didn't last as long as it did for others.

I haven't had attacks, and I have improved. What is still hard for me to see things that are easy for others, but are still difficult or impossible for me, even though I have come so far. It's "functional" stuff - opening doors with ease, without a walker getting in the way. I can sit straight, I can write with a regular pen, I can walk further and faster. Many things are not apparent to others - takes me about half the time to get ready in the morning. Heat still kills me; humidity is even worse - learned this when I visited Ohio recently.

So many people have helped me along this journey. People will say "you are walking faster" and I don't know whether they are saying it to make me feel good, or they really mean it. So I go time myself, and I am walking faster. Just this morning I was sure I had slowed, so I timed myself and I was a bit faster again.

My friends at work who have helped me kick up my legs while sitting (one of my exercises) and have added some leg massage with it have helped. They sometimes need to show me how far I have come. The same people raise the handles of my walker as I improve. It's a small few group of people, but they have helped the journey. I don't tend to name people in this blog, but they may read this and know who they are. Thank you!

I added physical therapy (PT) and was lucky to get an awesome PT. She knows I push myself and she will push me. Some days I show up for PT and I'm mentally exhausted. I just want to give in - throw in the towel. But she, the PT, doesn't let me. She doesn't let me off easy either - she pushes me. She shows me I am still doing well, that I am still getting better. She gives me motivation to keep working over the next week and often it's likely I'll get through the week, but return in the same mentally exhausted state, ready to throw in the towel on everything. She continues to push - she doesn't let me get away with throwing in the towel. When the gait machine is broken, I think I am off the hook, but she finds something else to challenge me, and it's never easy.

So, this past year - one of amazement. 21 years of MS is a lot to reverse. Significant progress made. Those who knew me as a runner would not think I look so good, but I look better. When I doubt, I go prove myself. I'll decide my legs aren't working, but then I almost talk to them - think of them working - and they work. Funny how this works - how many people wonder if their legs will work when they stand? If they did wonder, then they wouldn't have to concentrate on their legs when standing to force their mind to make the connection. My mom even comes with me to the track and has an apple for me, at the ready, as a midway snack through a lap. Yes, one stop now when I walk around the track - down from 6 stops in October. 60 minutes for that lap in October; 32 minutes in May.

I'm so lucky - I have supportive friends and family. Part of this is the church community - there are people there who have pulled me through some of the stress. Ampyra pulls me through, too. I'm ready to stop, but then I take a pill, I feel it kick in, and I am off.

And I'm still slow. People still have to wait for me. But I'm moving more. And I'm thankful to the people who wait, who don't tell me I should stop or that using my wheelchair might still be easier, and using my wheelchair would be faster. I'm thankful to the people who realize it's not about me taking things easier - it's about me pushing, and seeing how hard I can push.

Thanks be to God, for all the good of the past year, for being there through the incredible stress and frustration I have had to keep to myself (mostly, and I haven't wanted to let God into it either), and for being there while I push, push, push - others push - others complement. Thanks be to God. I am loved.

Peace.

The Golf Cart

2011-06-05T23:08:00.000-06:00

Back at the Kenyon reunion, while extremely fun, I realized how difficult it was be to get around campus with a wheelchair. You don't realize where all the hills are when you walk; you don't realize how big the campus really is; you don't realize that shortcuts you always took as a student don't work the same way with a wheelchair. Enter the golf cart!

There was a slight mix-up when we arrived Thur night and we didn't get the cart until Fri morning. I should say Jenny, my roommate of 3 years, got the golf cart on Fri morning. Then she drove it. Fri night I wheeled to our room from the bookstore. Seemed easier than getting back in the car. Wrong. I remember it was easy to get from the bookstore past 2 dorms to the third. How far could that be? Well, Jenny had all our bags unloaded by the time we found our way. The next morning it seemed it would be easy to get to the dining hall - it must be all downhill since the previous night was all uphill. Wrong again. Half down; the other half up. I was so glad to get the golf cart!

You would also think with 3 rows of seats, there should be room to spare. No. Wheelchair in back; walker, Beth, and backpacks in the middle; Jenny and Lori up front. I held onto the wheelchair. To get in, we developed a system where Jenny would lift my left leg and I would somehow hurl myself onto the seat. And away we would go - soon we were singing the theme from Indiana Jones as we traveled by golf cart. It was humorous. In a strange way, these were the good times.

The golf cart liked to jump when going in reverse, so we would all hold on and wonder, just how much would it jump each time. And which roads could we take this thing on?

Through all the comedy, Jenny was amazing. She would load and unload things. Did I want the wheelchair, walker, or both? The weekend was complicated because I needed to walk, but then I also needed to wheel. And when I walk, I realize there are new obstacles called doors, or curbs, or strange grooves in the sidewalk. I guess I realized that when I'm home, I know more of where these things are. What amazes me is this great walking I have at home is challenged anywhere new. At home I know where to use my wheelchair and where to use my walker. Somewhere new, I need both. At home I think I even know which buildings are easier, and even which bathrooms work. Somewhere new, I have to figure it out - is a door too heavy? If there's one of those buttons to open a door, will the door stay open long enough. So for all the times Jenny loaded and unloaded everything, lifted my leg and hoped I made it - well, that's when you know you have a great friend.

We had to return the golf cart. That was a bit sad. I mean, we had so much fun! We got places. Life was good.

Peace.

Ain't Got Time to Die

2011-06-02T21:59:00.000-06:00

This past weekend I went back to Kenyon College (which I love!) and got to be a part of the Chamber Singers reunion. It's acapella. Going back was a unique experience I loved. I was captured and didn't want to let go. I could feel the music become a part of me, my voice blending with those of about 90 others (including my daughter's!), a feeling of music at the very core of who I am. I have always loved music - it has always been at the core of who I am. But I haven't felt these feelings for so long. Music taken in, joined with others, and then shared with an audience of other alumni from Kenyon College, and people from the local community - it was incredible. In a moment, in so many moments...

Simple warm-ups from college - the favorite of hip-o (1), hip-o (2), hipohhhhhhh (1)... and variations... Ming-ee-ah ... ming a ming a ming a ming a ming... love those.

The concert - when it all came together for me. The most simple brilliance of using a music stand to hold music allowed me to concentrate on the music.

And the concert... (some of it)

Palestrina's Circut Cervus ... (so my soul longs for you oh God)

Erb's Shenandoah ... "Oh Shenandoah, I long to see you ... away, I'm bound away..."
http://www.youtube.com/watch?v=xjZ0SRD5EOs&feature=related
(imagine women's parts)
so beautiful and gripping.

Farmer's Fair Phyllis
The (short) song is about a man searching for his lover. But I'll never forget during rehearsal, the 2 toddlers released, one boy and one girl - the boy chasing the girl. They never "fell a kissing" as in the song, but I laughed s hard I couldn't sing this during rehearsal. During the concert, I somehow pulled it together.
http://www.youtube.com/watch?v=A3yy_ZT_e64&feature=related

Ralph Vaughan Williams - Loch Lomond
2 soldiers are captured in battle. The enemy decides to let one go but the other will die. The high road is to heaven. The music sways; I am taken as if in the middle of a conversation...
Oh, ye'll tak' the high road, and I'll tak' the low road,
And I'll be in Scotland afore ye;
But me and my true love will never meet again
On the bonnie, bonnie banks o' Loch Lomond.

After I graduated, "Doc Locke" started teaching some songs from South Africa. I never understood the intrigue until I returned this time and learned them.
Together, as a choir, we sway...
Khumalo's "Bawo, Thixo Somandla" and "Umgwagwa"
http://www.youtube.com/watch?v=G90l_3q2qi4
Berteau's "Shilohini"
I get it now - you don't learn these pieces - you feel them - you bond with others and move together.

Spirituals are always near the end of each concert...
Deep River...
I want to cross over into campground.
where campground is heaven. And to begin this piece on the word "Deep," is done with the note F (ok, perfect pitch must be part of this for me) which has a certain swell to it that only that note can do... and I am gripped... closing in peace, crossing "over into campground."

But then we transition to "Ain't Got Time to Die." This is upbeat. A slave is doing all these things - ain't no time to die. "Workin for my Master" could have a double-meaning of working for a slave owner, but really it's working for God. "NOW GET OUTTA MY WAY! I'm praising my Jesus. Outta my way! I'm praising my Lord... Ain't got time to die." In a different setting, I would have waved my hands in the air. I'm engaged in this piece with incredible joy and intent - more than when I was a student - the song pulls my faith into me while simultaneously letting me sing it out.
http://www.youtube.com/watch?v=gQr9JTCpZW4

And then we come back to Kenyon, where in Locke's "Height of This Hill" (poem by an alum) we learn, we keep learning, we find answers, answers, answers, as we go through life, but we find them from the hill upon which sits Kenyon. Later, "remember Beth, it's them, not you, is one of those answers I find."

And we end with tradition, and the Kokosing Farewell, where we sway like a river and recall that we will never forget Kenyon. Kokosing is the river running next to the hill where Kenyon sits. Watch the video (from 1:40). That's Doc Locke. He has everyone's attention. You can't see it, but he's making eye contact with everyone, individually. He may be smiling at them. It's unique - you just don't get this every day; in fact, I've only had it at Kenyon. And the song - always brings tears to my eyes.
http://www.youtube.com/watch?v=O_ErGDb99Ps

Old Kenyon we are like Kokosing
Obedient to some strange spell
Which urges us from all reposing
Farewell old Kenyon, fare thee well.

And yet we are not like Kokosing
Which bareth not upon its swell
But foam of motion's own composing
Farewell old Kenyon, fare thee well.

But when we are far from Kokosing
we still shall hear a calling bell.
When round us evening shades are closing
Farewell old Kenyon, fare thee well.

And see a river like Kokosing
in meadows sweet with asphodell
where memories dwell dear past supposing
Farewell old Kenyon, fare thee well.

Beyond the walls

2011-05-19T21:10:00.000-06:00

I was exiting a building the other day and saw a very diverse group of people... different races/ethnicities, some disabilities... I thought wow, now this is really a neat thing - a bunch of diversity and I'm surrounded by it. Too bad I was late (as usual) to get somewhere.

But before I left someone said, "yes, all these homeless people were just waiting here for their bus and no one knew what to do with them."

They seemed fine to me - much like any other person coming or leaving the building.

Another time, in a different building, I was using my walker and it was too hot and it was a bit too far. Everyone seemed to leave. In this "borderline" part of town, there was a woman, her baby, and a man. They definitely didn't look rich. But they were the ones who helped me get my walker in the car. Everyone else I knew had left.

One last example - I left an appointment. I was the last of the day, it was at least 85 degrees, and it was the end of the day. The people I saw at the appointment were still inside the building. A lady got off a bus and helped me with my wheelchair. Again, definitely not rich.

Inside many church walls there are food drives. I bring food, someone gives the food out to people, or the church may donate food. Certainly some people volunteer to serve meals or volunteer for Habitat for Humanity. They may go on mission trips to help people and they may be briefly immersed in that culture.

But what I wonder is, what happens in day-to-day life? Maybe I'm biased/naive and think the people in general, in my church, would embrace diversity rather than make snide comments about people who may, or may not be, homeless. Maybe the people I saw the other day weren't homeless but just didn't have much money. But I know some of the people who make comments and judge a bit - I know these people go to church.

Do they keep their giving inside the walls of church? Do they think they've done their bit by giving a couple cans?

I bet there are times when I also judge. But wouldn't it be neat if we took what we do inside the church walls and applied it to day-to-day life? I think we'd realize there is a lot of beauty out there.

Those people waiting for a bus? They were actually invited to the building to give their input on something. I doubt they were all homeless, but does that matter?

Peace.

Stamina

2011-05-15T22:03:00.000-06:00

MS Walk/Roll/Combo recap, in a way...

Family and friends who came - they are the best.

How strange is to bring the walker in addition to having the wheelchair?

And there was the Ampyra tent - it was swamped - the place to be.
That was exciting.
Telling a person working what a wonder it has been - all the positive things.

And he said...
"Does it help your stamina?"

Yes, that's it - stamina!
I walk better, faster - everything is different now.
That's pretty amazing, faster, better, keeping going because

Most days I don't feel like eating until about 4pm.
I have trouble sleeping - I have bad leg spasms.

The stress of the last month has been incredible
and I have to keep it to myself
but it has hurt.

It would normally cause an MS attack,
as continually be "slammed to the floor"
by various things which I can't control
does that.

I've had the pre-attack fatigue where I go to bed early.
But Ampyra kicks in for my legs
and I wake up to a new day.

I can walk further,
I can withstand the insomnia.

But mostly, I have the stamina to somehow take the
boom, boom, boom nature of life, from everywhere
pop a pill, and I'm back.

It's been 11 months since an attack.
On that beautiful day, slightly cool, bright sun,
surrounded by family, friends, and all the others who were there.

We came together as community.
It's beautiful.
I wish this beauty could be transferred.

Peace.

Minimization

2011-05-09T20:10:00.000-06:00

I was taking a diversity class last week - supposed to be an overview while at the same time going deep, all within 4 hours.

We introduced ourselves and told a memorable experience related to diversity. We talked about things like some people are ok standing close to people while other people are not; some people are "touchy-feely" while others are not.

We were told about the different stages of being "culturally competent." In the middle is this stage called minimization. That's when you take someone of one type of diversity and make comparisons, so supposedly you are minimizing their diversity. I find that interesting - it's as if we want to leave people in their categories. On the other hand I suppose if someone told me they know what it's like to be in a wheelchair because they spent a week in one then yes, that's minimizing it.

We did an exercise where we watched a well known video from the late 60s where the teacher split the class into blue eyed kids and brown eyed kids. Then one group was treated badly for a day and the next day they switched. Then you are supposed to see how behavior changes and how people can act.

Then we got to the section on white privilege. There was a paper with 30 questions like whether you had to worry when pulled over because of a person's race. On that questionnaire, some questions didn't specify race, so maybe I felt different due to disability. Then we started discussing and I pointed out that while someone of a certain race might feel uncomfortable in a given situation, so might I, because of disability, which is isolating. I was told that we couldn't discuss this because we were talking about white privilege. I suppose I was minimizing things. But the problem as I see it is, we never talked about disability and how that changes things. And a big difference is, after I go to a place and feel different, I go home and though I love my family, they don't have disabilities. Is that a double whammy?

We ended with a brief exercise where we did get to talk about how people with disabilities have things they might not have elsewhere. What?!! Ummmm.. But we were in small groups by then (other small groups talked about other diverse groups), and no one in the group talking about disability had a disability. So they came up with accessible parking spots being present and one other thing I forget. Both of these are required by law - definitely not extras. I think that's minimization.

But go back to comparisons. I don't know what it's like to be a different race. But I do know that disability crosses race and other things. When we did the MS Walk on Saturday this was quite clear. Beautiful day. Wonderful family and friends. Community - all fighting the same thing.

But back to a harsh reality. Disability is most often very unique. I'm the only one in my house who has MS. No matter how much I am loved, no matter how much support I have, it's still MS. At the end of the day, when I go to bed, I'm alone with it. And there is where God can be found.

Peace.

Trust

2011-05-01T16:56:00.000-06:00

Kenyon College has something called an honor code. The honor code is important - it means that you are on your honor to be honest. This seems so simple. It allows a professor to leave while students take exams, or for professors to send take-home exams where students do not discuss the exams with each other. I'm sure a few abuse it, but I wasn't one. Having this system develops trust at many levels. Students tell the truth; faculty tell the truth.

In society, we don't have this trust in so many places - in fact, we have a lack of trust. It can be complex and throw a person off if they are used to the honor code - trust model. Tied into this, in some manner, is difference. Where there is difference there can be discrimination. Discrimination creates a lack of trust. Lack of trust then grows - from those discriminating (whether they know it or not) to those discriminated against. This is a complicated sense of dynamics. I'm going to throw into the mix "parallel worlds." So with discrimination, lack of trust, and parallel worlds, this is a strange blog and let's see how it goes. I know people may not agree with it or understand it, but it's reality to me.

Obama's birth certificate - please don't moan. Keep reading... I know we've all heard too much of it, from whatever point of view you have. Here comes my point of view. No other president has had to provide so much proof. Of course we all provide birth certificates. But nothing has ever been good enough for Obama's. I think the long form, recently submitted, was the fourth or fifth piece of evidence. And I've already received 2 emails on how it isn't good enough either and of course someone altered it, to. Nothing will ever be good enough. No matter how much proof there is, it's never good enough and it's like starting over. And that, to me, is discrimination - proving oneself over and over and over and over ... and having to start again and go through the same process, when others don't have to do the same.

I'm not Obama by any means, but I know about this continual proving of oneself and it never being good enough. I don't have to prove my birth certificate. I have to prove other things. Despite how many people tell me how inspirational I am, I am still proving. It happens again and again and again, in multiple areas of life (not all, but multiple). I follow the instructions of everyone - A through Z - but it seems my A through Z is not 26 steps. There's an A1, a B1 - it depends on what it is but there are always extra steps. And it's never good enough - like the submission of Obama's long form, somehow I may have to go back to step 1. To me, again, this is discrimination. Discrimination is having to continually prove oneself, again and again, when others don't have to do the same thing.

I have been told that when some people learn to drive, part of learning is knowing they may be pulled over because of their race, and they must be ready for what to do when this happens. I worry if I am pulled over that the hand controls will put me in a questionable status - can she drive. If there's an accident, what happens? Who is to blame? Accidents frighten me in a different way than others.

And so we get to trust. Knowing I have to prove myself again and again, in many different areas of life, and that it often doesn't seem to matter, my trust level is pretty low. The fact that others do not trust all the proof given leads me to think they have no trust. This occurs for different categories - that word I hate - of people.

The question is how to get past this. We have so much legislation. So much training is provided. Because of this, many people think everything is fine and that there are no problems.

To really get past this, there has to be a culture shift. Trust has to change, for everyone.

I'm sure Kenyon isn't perfect, but it's something. So I'm back at Kenyon. I'm not sure how to define the culture there, but it seems to work better. So there must be something I'm missing.

In the meantime, I'll keep trying to prove myself. I know the majority of people who read this will probably be surprised at this (that I am continually proving myself all over the place in my life and getting nowhere with it), but the ones reading this know me and aren't the people wanting proof. That means there is hope that proof will get through to others someday.

Peace.

Peace

2011-04-30T21:58:00.000-06:00

Reach up, arms straight, welcoming, eyes closed.
Bring arms down slowly to circle myself.

I am in a circle.
There are dots everywhere.
Make them go away.
Let things go, all the distractions of life.
There is one dot left in the middle.

Now lines appear, jetting out from the dot, to the outer circle.
Make these go away.
They are the larger distractions of life.
They dim.

The dot in the middle of the circle is still there.
I have briefly found it.
All but one dot gone.
Lines are dimmed.

The center dot must be peace.
I find it, briefly, shutting out chaos.

I am in prayer.

Peace.

Risen

2011-04-24T19:51:00.000-06:00

My favorite memory of Easter is from the year I was diagnosed with MS. I had started to run again, and on Easter, before church, ended my run on a downhill from a golf course when a woman in her car drove down the same hill, rolled down her window, enthusiastically waved, and shouted "Happy Easter!" Yes! I was running down that hill, on that beautiful morning... I was running down that hill... I was running! Yes! Alleluiah! I hadn't been able to run for months, but right as I was diagnosed, I had started again. That's the uncertainty of MS. I was running - it was slower, and I didn't know what would happen. But I was taken to new "heights."

Recently (April 10), I hit 10 months without an MS attack and felt a bit the same way. Then there started to be some "hiccups." They were small - what was this? Is it too hot where I spend most of my time? It's 75 degrees. I am having trouble walking. I can't feel my hands. Uh oh...

I would return home and find most strength returned. But day after day of 75 was taking a toll. Take it easy. Rest. Stop pushing.

And then Maundy Thursday I was at home. As the day went on, I felt everything return. I was ok. It wasn't MS that got me. It was 75 degrees. I tell people that heat gets to me and it's interesting that they may say "me too." No - see it makes me physically sick.

But I came back. I rested. I waited, with more patience than I thought I had.

It was almost like this was my own unique Lent journey, except that it turned on Maundy Thursday, not on Sunday, when "he is risen."

I had to take other steps too. Recent extreme stress - change that to a focus on physical strength. I was being drained, but before I hit bottom, I turned.

On Thursday, I questioned if things had REALLY turned, so I tried a few new things - was I better? Was it possible that not only was I better, but that I took another "step" forward? Could I stand and let go even more? Yes? Could I walk somewhere I hadn't even considered until randomly, the night of Maundy Thursday? Yes, I could. In a totally different sense than that of Christ, I am risen.

I am standing here, right now, in my standing frame where I spend a half hour each day (work up to an hour?), writing this, knowing I somehow averted disaster, which took rest, patience, time to cry, time to pause, time to laugh. It took until Holy Week for me to do these things, but it is never too late. As usual, God is with me.

And it was strange timing as it all turned around near Easter and I celebrated Easter stronger... just like back when I was running. I still run in my dreams, which I won't give up

Only God knows if there's significance in timing or if it's just random, but I've been accompanied by God again on this journey.

Christ is risen. He is risen indeed. Alleluiah!

Thanks be to God.

Peace.

Were you there?

2011-04-22T22:35:00.000-06:00

Good Friday.

Hearing the Gospel describing Jesus' death shocks me.

Sometimes it causes me to tremble, tremble, tremble.

My struggles are nothing.

I wonder how society can be so, so, so, ...
I can't describe it.

Were you there when they crucified my Lord?

I hear society (to a much greater extent) in the Gospel.

Were you there when they nailed him to the tree?

Earlier Jesus says we must...
Love one another.
As I have loved you, so love one another.
Love your enemies and pray for those who persecute you.

He does this, always.
We do not.

Were you there when they pierced him in the side?

He goes to the cross to save us.

Were you there when the sun refused to shine?

He dies for us.

Were you there when the sun refused to shine?

Sometimes it causes me to tremble, tremble, tremble...

It is finished.

This Believer

2011-04-16T19:25:00.000-06:00

It's been a tough, very tough, couple of weeks. On one hand, I have this wonderful thing in my life, granting me a gift of working hard to walk better, stand better, do everything better. On the other other hand, there's another thing - unrelated - theatening to derail the gift by imposing a lot of stress. This other thing - it's a series of events - it's exhausting; it's unfair, I suppose; but it goes past unfair and leads to even greater exhaustion. And I cling to the good, struggle with the bad, feel everything is so heavy, struggle to find my way. And though I can't say what the exhausting sequence is, I can write this, and this will help. There's a song - it can go toward either the wonderful thing, the exhausting thing, or both. That's the great thing about some songs. The danger is the exhausting thing causes stress and stress and MS don't mix. So I continue to try to cling to the gift, despite a seeming network of land mines everywhere.

The song, with my thoughts... (James Hersch)

"Put to the test
Coming up short
Nothing makes sense
About this last resort."

The last resort - my last steps - each one was a struggle. At the last resort Ampyra, the gift, came along. It really didn't make any sense...

"Step after step
There's no way out
Lost and I'm blind to what this is about."

New steps - step after step after step - new steps - steps that are stronger. I am lost and blind to this - now. But...

"But I will consider
that the hand of God is able
Even now
To deliver,
From the shadow of death
This Believer."

God is there with me, for each of these new steps,
as God was right there with me for each of the old steps.
God can take me, on the brink of no walking
And be with me while I learn to believe that from this no walking, or perhaps from "the shadow of death," I can come back...

"Put to the test
On a mountain of woe
God only knows where this path's going to go.
Follow my faith
And it's led me to here
But I can't find the line between my faith and my fear."

I don't know what will happen now, with legs still getting stronger.

There's a new mountain of woe.
It's scary.
I'm somewhere between faith and fear...

"But I will consider
that the hand of God is able
Even now
To deliver,
From the shadow of death
This Believer."

Again, God is here. I will "consider" that I can get through this. I will try to find my way through the new obstacles thrown in my path. I need to focus on my new steps rather than obstacles. This is very difficult. I am dragging. I must trust now that I will find my way out.

"And in a season of change
there is a reason for doubt
But there's a faith I can find when I have no way out........"

There sure is a reason for doubt! Everything was fine. Now there are land mines everywhere. I can't see them. But I have to lean on faith, because I can't see the way out...

"And I will consider
that the hand of God is able
Even now,
To deliver
From the shadow of death
This Believer."

Peace.

Healing

2011-04-13T22:35:00.000-06:00

Healing service at church tonight.

One may think of going to the front to heal sickness,
their own or that of someone else.

Sickness of a medical state for most.
Maybe some contemplate me needing healing for my MS.

But I'm fine with my MS - in a sense, I don't need healing there.

Where I do need healing is in the words of others
that have stung.

I need to be healed from those words to move on.

Ideally I would get to forgiveness, but I'm not there yet.

So I need healing where I am sick,
where words have stung
where I am asked to be a voice but no one listens.

So God, can you heal me for this and more.

Healing - sometimes it feels impossible.

Peace.

Learning

2011-04-12T21:47:00.000-06:00

Do some people never learn
compassion?

Do some people only exhibit
bitterness?

Do some people never
smile?
laugh?

Do some people not feel anything when they
lie?

Do some people live their life this way
every day?

Is it possible that these people
go to church?

How/what do they pray?

How will they ever learn to
love one another?

Is there anything that can happen to them to create a
change?

How do they
sleep?

What do they
think?

Do they have
faith?

My faith journey includes asking for help with them for
respect,
understanding,
forgiveness,

knowing that these three things may somehow occur for
me,

but will probably never occur for
theme.

And this makes me
disappointed,
confused,
sad.

Life goes on.
I must turn away, turn toward the
good,
positive,
hopeful.

Peace.

Getting it

2011-04-08T20:05:00.000-06:00

Sometimes I volunteer for the school - not often enough, but I do it. Today I was there during math. The teacher gave me a group and I tried to help them "get" a concept. They're learning subtraction in 2 digits - not the easy kind anymore. They from new school math to the old way and new school math here seems like it was pointless.

This class of kids loves to talk. This grade is known for it - they were this way in kindergarten and first grade - so much energy they cannot keep still and they must talk. Most kids are like this but I'm told for some reason, this class of kids that includes my daughter is the chattiest many have seen. They're now in second grade.

We used the whiteboard - a group of 7, late in the day, doing math, on a Friday. But I tried anyway to teach them this concept in a different way, seeming to stop every 5 seconds with the happy chatter.

In the end, some understood and some didn't - nothing had changed, except for one girl. She was up at the whiteboard with me and we were going through it - cross this number first, subtract 1, bring 10 to the other side. Don't worry about using your fingers to subtract right now. And she kept going. I think it finally clicked for her and she was excited. She got it.

That was a totally great moment - to see just one child understand something that seemed so alien to them. And they weren't expected to understand it.

So now I "get it" - why people must go into teaching.

It can be one kid at a time.

And it seems so rewarding.

Now if we could only get more money... another topic...

Peace.

Time to pause

2011-04-06T07:01:00.000-06:00

"Mommy, will you pick me up after choir?" (so she doesn't have to go to the after-school program)

... pause ...

"Yes."

Slow down life.
Not later.
Now.
Pause.
Remember.

Memories I hold.
I'm not part of something that happened.
But the memories of the past come back anyway.

Memories of the time when a medication mix-up
caused depression
as the most painful part of my life.

One day I came home and didn't want to leave.
But someone had to pick Lori up.
And so, Lori saved my life.

So during this time when memories return,
it is time to pause.
I'm now happy, even with the memories.
But because of those memories...

I will try to "love your neighbor as yourself."
"Love one another."
And I will pick up Lori.

"I can do all this through him who gives me strength." (Phillipians 4 13)

My hope is that others may understand the needs others and myself have now.
My hope is that we all support each other.
My hope is that we all give each other time to pause.

Peace.

Choosing Kenyon

2011-03-31T18:45:00.000-06:00

It's the time of year when seniors in high school choose colleges and I think back to choosing Kenyon, which I actually did early, in November. So I've been brought back a bit because Kenyon has been in the news via basketball - a bit funny as I never went to a basketball game at Kenyon.

I visited 3 schools - Kenyon was the last. I was sure I wanted to go to school #1 in Minnesota. I went there to verify it and left a bit puzzled - it was ok, but didn't feel quite right, and it was cold!

I visited school #2 and the cross country coach took a lot of time driving me around the cross country course in a golf cart, saying what a good runner I was. The students there were perhaps the most genuine of anywhere - Earlham - and before I was diagnosed with MS, a group of them who had met me sent me a well wishes card at Kenyon that made me cry. I liked that school, but... I don't know - not totally right.

November 2 - Kenyon. Leaves were falling off the trees - it was beautiful. I was driven to the middle of nowhere - where Kenyon is - by 2 animated and a bit strange guys who seemed to just love life.

I stayed with Jody (later a friend) who was quiet but nice. I went to a math class taught by a somewhat quirky professor.

And then I went to cross country practice. Nice coach (I'd better be careful - he could read this!) and team - a bit quirky (which I MUST be). And then they said, well, would you want to go to the soccer game? They were animated. Sure - a soccer game - this school loved soccer games. And the soccer game made it final - I wanted to go there.

It wasn't the academics like it should have been. It was the people - so animated - so cheerful. Kelley was the one I remember the most - a beautiful laugh - her humor in taking this high schooler to the game where there was a lot of smoking, but also a lot of good-hearted cheering. Kelley - the one whose car I borrowed so many times to drive to the doctor since I didn't have a car - the one who was with me when I was diagnosed. I went home and immediately changed my application to early admission - wondering, hoping I could become a part of that place.

The whole group of people I met had such energy and spark - maybe quirky - maybe that made it more fun -
it's part of the magic
that is Kenyon.

That magic, that spark - I don't think it exists in quite the same way anywhere else.

And so... choosing Kenyon. I was so lucky.

Peace.

Saint Theresa's Prayer

2011-03-27T13:49:00.000-06:00

This prayer usually is sent to me via email with a request to forward to some of my friends, so maybe a blog posting will work instead. I do like this prayer...

May today there be peace within.
May you trust God that you are exactly where you are meant to be.
May you not forget the infinite possibilities that are born of faith.
May you use those gifts that you have received, and pass on the love that has been given to you.
May you be content knowing you are a child of God.
Let this presence settle into your bones, and allow your soul the freedom to sing,
Dance, praise and love.
It is there for each and every one of us.

I do like this prayer. It's been a really odd week for me, so perhaps this was sent at a good time - so there can be peace within, today, that somehow I know I'm exactly where I'm supposed to be, that this coming week I may find freedom to sing, dance, praise, and love.

The odd week can't really be described because it's confidential and it's that way for some good reasons. But there are times when I've been with Lori in the car and she's said, "Mommy, are you ok?" I'm ok - just in thought, processing things, or trying to process things, and wondering how God really does fit into all of this. In the middle of processing, there is new information that my boss is leaving and there's even more to process. At that point I must have looked shocked or sad, or something... It's been enough to almost bring me to a standstill, not knowing what to think, do, write, etc. But life goes on and I think perhaps I should ask God to get me to stop processing!

In the middle of this, there's ongoing therapy which I have woven into my life. I got a new, lighter weight brace. It's awesome - my leg feels so much lighter. I go to physical therapy weekly and keep getting better. There is excitement in that, but then there is returning to where I see people who are processing and I return to processing. Then I go somewhere else where I must continue walking and when I am ready for a break, my legs say "Walk!" It's chaotic - this weaving/balancing of processing, celebrating, obeying (obeying my legs).

As the new week begins and I have this prayer, I hope that I can find a peace, be content, sing, dance, praise, and love. And along with myself, I hope others can do the same.

Peace.

Faith journey

2011-03-20T15:18:00.000-06:00

Part of what I said in church, or intended to say - we're doing testimonials during Lent ...

I was baptized by my grandfather as a very small infant. Unfortunately, my grandfather passed away when I was a small infant, so I never knew him personally.

I've always had a strong faith, but I can't trace my faith journey as a child or a teenager back to any one person who inspired or influenced me in faith. So, I can only think it must have been my grandfather - knowing he baptized me and was a minister, hearing a few stories of him, and when I asked, getting one of his many bibles (which is now well worn).

Some people wonder, or ask, how I can still have strong faith when I was diagnosed with MS at a young age (20). I was in college in Ohio, far away from my family in Colorado. It was hard, very hard, but I went to an amazing school (Kenyon College) where I had the support of great friends. But it was still hard and I reached to our minister on campus. We met on the beautiful campus, in the beautiful chapel - in the basement - him, his secretary, and me. We prayed together, we were still together, we took everything in together. And that's one of the 2 most profound times in my life where I've sensed being held. And then I knew I would be ok, no matter what happened.

Life moved on - MS is no fun - but there are so many good things in life. I got married and had a daughter, Lori. We joined Holy Love and I found what had been missing for me - a faith community.

So I look back and I've always felt that God is with me. I don't believe that God gave me MS because I could handle it, or because it's part of some great plan, because God is good. God is with me through everything - bad and good - and there's a lot of good. There's a new medicine which is helping me do a lot of things better.

So my faith journey continues. I don't know where life will go. I do know that God will be with me. I take time to be still - to pray - to pause. Then I'm at peace - and God is right there.

A cup of coffee

2011-03-17T19:27:00.000-06:00

I love coffee. I love to buy it on my morning drive to work and am convinced I might not make it to work without that cup.

The other night, I was telling my husband, wouldn't it be awesome to be able to walk unassisted just even a little bit?

Wouldn't it be neat to wake up and be able to cross the room by myself?

And so, he said, what would you do first?

I remember when I would park far away from work - I didn't use my placard until I HAD to use it. I would buy my coffee and carry it into work. One day someone informed me I was spilling it a bit which I knew - I wasn't so steady. So I got special airtight containers for my coffee. I parked closer. Eventually I gave up carrying my coffee into work.

Last Sunday I got to "coffee time" early at church and, clutching, I chose my own donut and made my own coffee. It seems so silly. But to me, this was significant. We have a lot of donuts! Then someone carried the coffee to a table for me.

So, there's progress.

But really, if I ever did get the chance to walk a little way unassisted and steady, what do you think I would do?

It's so obvious.

Yes, I'd get my own cup of coffee.

Peace.

Where are they?

2011-03-13T21:43:00.000-06:00

Devastating images from Japan,
buildings toppled,
cities flooded,
residents scrambling
wearing masks.

Streets are in ruin.
Things are broken,
streets are broken.
Water is everywhere.
People are rescued from housetops.

Remember 9-11.
People were running from the scene.
Mouths were covered to avoid the dust.

It is said the poor are the worst affected.

But where are they, many of whom are also poor?

Are they in hospitals?
Hospitals in Japan are flooded to the fourth floor.

Where are they?
They are often absent in media anyway.
They are still absent.

I read the likelihood that many of them survived is unlikely.
They were told to wait for help on a high floor of the World Trade Center.
That building crumbled as they sat, waiting for help.

They can't make it to the rooftop.
They may be on those bottom fourth floors of the hospitals that are flooded.
They can't navigate uneven pavement.
They can't navigate around all the wreckage.

And so they are not seen, because often they may not even begin to be able to seek help.

We pray for all those who are affected by this disaster, many of whom have lost their lives.
We pray especially for the poor during this time.
Let us not forget to pray for those who we haven't seen.
Many may have lost their lives as well.
Many may be stuck unable to navigate to ask for help.

Let us pray for those with disabilities.
We don't see them.
Where are they?
Let us pray.

Peace.

Be Still

2011-03-07T18:45:00.000-07:00

Lent, to me, is partly about incorporating stillness in life, taking the time to just be, to be still.

Each morning I attempt this. I get up, go sit in a white chair, and try to spend that time. The cat happily joins me. The dog then awakes, starts her panting routine, wakes my husband who lets her out, and that's the end. But I do find other times.

In my life, it's been during a few of those times I have most felt God's presence, there, holding me, with the assurance that all will be ok.

Recently I can be still while standing. This is a new experience. You learn how to do these things in life, then MS takes them away, and then, for whatever reason, you may be able to get them back. When that happens, it seems miraculous.

On Saturday I was standing outside on our deck (a great "be still" place). I practice standing here against the railing, flexing all these muscles people take for granted that enable a person to stand straight. I count to 120 (seconds - 2 minutes) and then normally stop, but on Saturday I kept standing - I could just be. I was still. I could hear the birds around me as if telling me to just be - to be still. Still in this new stance of standing is absolute heaven to me. I breathe, I take in the fresh air, I feel my feet on the ground beneath me. I push up on my toes as if reaching for the sky. My hands position themselves so I almost have my balance. And I imagine reaching, pushing on toes, reaching.

Beautiful words come...

"Seek ye first the Kingdom of God
and its righteousness
And all these things shall be added unto you...

Ask and it shall be given unto you
Seek and ye shall find.
Knock and the door shall be opened unto you..."

Seek. Ask. Knock.
Be still. Reach. Feel.

Faith asks (toes reach),
Hope seeks (standing still),
Love knocks (feel the experience).

"All these things shall be added unto you."

God is with us.

Be still.

Peace.

Being 8

2011-03-03T17:12:00.000-07:00

When you're 8, life is rough. Your parents let you dress as you wish when you go to school (parents choose their battles), you go to school all day and play with your friends, you come home, do homework, play games, read, etc, and go to bed. It's fun.

You might have activities. My daughter likes to do anything - I suppose she is "well-rounded!"

I realized something in skiing this year. She's really good at skiing, but that's not what I noticed. I noticed that even though she is really good, she was skiing the easy stuff. Skiing a black, to her, is something she just says she wants to do. She's good enough to do a black (advanced) slope, and probably do it well.

Recently we were skiing and her teacher took her to the kids area which was off a really difficult blue. I was sit-skiing and was being tethered, which allows me to ski anything because my teacher can control speed and turns from behind via ropes, or "tethers." Since I was "tethered," I was faster, and could ski down and then watch her ski.

It was very steep. She was skiing well, in complete control. But, she didn't look happy. I'm not sure who decided this was a great idea to do this blue, her or her teacher, because I was just doing what they wanted to do.

By the end, she was done. The fun was all gone.

It turned out ok, because my shoulder hurts and it's time for the season to end so I don't re-injure it. But this gives us both time to get back to having fun.

I think of so many 8 year olds who are pushed because they are good at something. It's not the majority, but some are pushed way too hard just because they are good.

Hopefully I won't do that. Being 8 should be fun without a bunch of pressure. Lori will make choices on what she wants and when she wants to push limits to be better (well, except on things like homework!). Those are her decisions.

Until that happens, I'm happy with her skiing straight down the easy stuff, skiing through the trees, skiing through the easy but fun kids stuff. That's fun for her. And being 8, for the most part, should be fun.

I wish I could go back to 8. There really aren't any worries.

Peace.

doubt and faith

2011-02-22T08:58:00.001-07:00

In the still of the morning,
Legs are swung off the bed.
Each morning.
I sit, balanced.

Balance should give me faith
in me.
I didn't used to balance like this.
This is MS.
Each day is different.
But now I can balance.

And I hesitate.
Will my legs work when I rise?
I doubt.

Should I grip the dresser, as I used to do?
Or should I trust that my legs will hold me?
I hesitate, for how long?
I push up and my legs work,
without faith.
I am standing.

And yet
I do not doubt God,
I have faith in God,
that God will be with me
on my journey.

But
I doubt myself
and test how my legs work
because I do not have faith in me.

All of this
seems backward.
It seems I would have doubt
and lack faith
in God.

But I doubt
and lack faith
in me

not doubting,
having complete faith
that God is with me.

Peace.

Happy birthday Lori!

2011-02-19T18:10:00.000-07:00

(Enter one doctor)
"No, you can't.
You need to do ..........
That's impossible."

(Enter my favorite rehab doc, months later)
Me: "I'm pregnant."

Him: "Congratulations."
He really meant it.

Him: "Go to Alaska. Have a great time.
Come back and we'll go from there.
You will be fine."

And so began Lori.

MS in chaos.

MS calmed.

Lori born. (Feb 20)

Symptoms of MS weren't as bad.

I tell her she is a miracle.

I think she is sick of hearing this.

But she is... a miracle.

Never say can't.

Start with some kind of "can" and go from there.

8 years old.

I wouldn't change a thing.

I always wanted a daughter.

She is a true gift.

Peace.

To Love and Be Loved

2011-02-14T20:41:00.000-07:00

Occasionally people say things that are so very basic, so simple - you may have heard them previously - yet they stick with you as you go through your life.

We were on a lift (skiing) and someone was talking about a relationship that seemed like ... well, it seemed like, given the people in it, it couldn't be "real" or it wasn't a relationship in the way one would traditionally think of a relationship. The volunteer who was with the instructor and me that day said, "everyone deserves to love and be loved."

That seems easy enough. But the instructor clearly was done with love. I think he said he was too old for it. So I thought there must be something... his cat died recently and he absolutely adored that cat. He couldn't express that, but you could feel it. Yet, the cat was gone, and he is not getting another cat. So I came up with it - his Harley. Yup - I think he loves his Harley (I also think, when he can't ride his Harley, he loves his monoski). Untraditional when one thinks of love.

There are many other untraditional people we love (or animals, or motorcycles, or whatever). What bothers me is that with some of these, we tend to judge them. I don't need to name them, because I think people know what they are. What seems to be most accepted is if two people are basically the same, one being a man and the other being a woman, and they are married, live in a house with a white picket fence, have 2 kids, etc. We laugh about the white picket fence, but I think it still exists. And that's ok too, because everyone deserves to love and be loved.

But these other, untraditional, loves - they're ok too. I think everyone does deserve to love and be loved, and I hope I don't judge.

So, very importantly, "The first duty of love is to listen." (Paul Tillich)

And also,

"And now faith, hope, and love abide, these three; and the greatest of these is love." - 1 Corinthians 13:13

Happy Valentine's Day.

Peace.

Another year, same disease, different outcome

2011-02-11T07:00:00.003-07:00

It's always a week that sneaks up and seems to say "gotcha" without warning, so there's something about it. It's a week where I'm not in a good mood, and I feel down, until today, because I remember knowing, and knowing was better than thinking I was imagining things. (Quotes from "One Maker" by James Hersch)

I've had MS for 21 years, and 18 years ago today I was diagnosed with MS.

"Leaf falling, river running, flower dying in the fall."

I remember the neurologist said at one visit, "it's an exciting time to have MS ... (pause) ... I mean ..." We both smiled. As far as neurologists go, he was my favorite - maybe because he didn't specialize in MS? He diagnosed me with lovely MS, with my good friend Kelley there, as I was in school in Ohio. He let me use his phone to call my parents who were in Colorado. Thank goodness for all the people who helped at Kenyon - that is, the people who knew - I asked that not everyone be told - and that was honored. So the cross-country team, an econ professor, and the pastor of the small church there (and a few other friends). And I got better for awhile - I started to run again - I ran for about 6 more years.

"Dead of winter, spring's coming. Who can understand it all?"

We prayed - the pastor, his secretary, and me, in the basement, and I felt God and that everything would be ok. And the story repeats each year. God told me that everything would be ok. That's because God is there along the journey, which has seemed long.

"Time moving, earth spinning. Another new beginning."

"One Spirit in the world surrounds us.
One Savior with his arms around us.
One Maker with a promise for them all."

And I pause here for my statement - God doesn't have this grand plan so that I get MS and someone else gets abused and another mass killing occurs. Our God is a good God. God gave us free choice. Evil happens. God is with us along the journey. God does not decide who gets what, and who wins a battle, who doesn't win. God doesn't say Beth can have MS because Beth can handle it. But God is with Beth along the way, and it is by faith that I have worked through much of these past 21 years.

"One Spirit, one Savior, one Maker for them all."

Nothing seemed to help me, things somewhat slowly broke, and much went unnoticed by me and others who wouldn't notice certain things. And then came Ampyra - really the first thing to come and help me. Other things help other people and though happy for them, I wondered why nothing worked for me. And the journey continued. Ampyra doesn't work for everyone - I don't know how long it will work for me - but this year has been a different year for my MS.

"One Spirit in the World surrounds us.
One Savior with his arms around us.
One Maker with a promise for them all."

No one knows where a journey will lead. Every year this day comes and it's a reminder - "gotcha - you are mine." But this year perhaps I play a "gotcha." 8 months without an attack, even though Ampyra isn't supposed to stop those.

"Gotcha" - life is better.
"Gotcha" - I've come a long way.

There is still such a disconnect from where I came when this all started. I realize I have come so far these past 6 months (I actually have been learning how to crawl!), and yet, to the outside world, it looks like things are difficult. Sometimes things are difficult, but nothing like they were. And I don't know where they will go, but God will be with me.

18 years. 17.5 of those years spent with nothing but some small hope. .5 years of a turn-around. God there along the way, through good and bad.

"One suffering, one crying, One back against the wall.
One living. One dying. One learning how to crawl.
One given in sorrow. Praying for a new tomorrow."

"One Spirit, One Savior, One Maker for us all."

Peace.

Celebrate Living

2011-02-03T14:41:00.000-07:00

Someone wrote on "Celebrate Walking," so I informed people that it wasn't very inclusive of people who still did things but can't walk. As per the 2000 Census, 21.2 million, or 8.2 percent of the population has a limit to basic physical activity, like walking. (http://www.census.gov/prod/2003pubs/c2kbr-17.pdf) I "walked" into that one! "Well Beth, why don't you write an alternative then?" And so this would be the first draft, like the rest of the posts here. Let's see how it goes.

I thought I would go with the title "Celebrate Movement." But then Jean Ann, my former track coach left this world last week due to ALS, or Lou Gehrig's disease. Jean Ann could hardly move. But inside, Jean Ann was still there, sending funny emails only 5 days before she left.

Her brother said, "even in the midst of the worst possible thing that could happen, we know life... And we can live also ... not waiting until tomorrow ... but now. Abundantly and full and joyful. Even in the midst of death, we can live."

Celebrate living. Perhaps some people with (physical) disabilities can walk. Perhaps that walk is limited and a cane, crutches, or a walker is/are used. Perhaps walking is celebrated in the sense of being able to walk, even if it is only a few steps. Perhaps it is celebrated with a new medicine designed to help walking with Multiple Sclerosis - maybe it's still a limited walk, but it's better than it was.

Celebrate living. Perhaps people with (physical) disabilities use wheelchairs, power chairs, or scooters. Perhaps these devices are used all the time. Perhaps they are used for distance and the person can walk sometimes. Perhaps we should celebrate rolling - it gives more independence, because wheels allow people to go places. People can go to the mall! People are not stuck at home.

Celebrate living. People with disabilities can experience extreme fatigue. This may keep some at home. From home, the online medical record can be accessed, the physician's office can be called, the physician can be emailed, or medicines can be ordered online (and delivered via mail).

Celebrate living. It can take a lot if energy to go to a medical office - getting out of a car, coming and going. But our flu clinics mean people never have to get out of the car. People can go to a drive-through clinic, roll down the window, and stick out their arm for a shot.

Celebrate living. There isn't a need to walk when there is adaptive skiing (allowing a person to sit), handcycling (a bike powered by arms), accessible ropes courses, accessible anything. There are many activities. If a person can lift their head, start there - it's a sit-up - celebrate that.

Celebrate living. Jean Ann kept a very active life on the Internet by using her eyes to type - many jokes, frustration, happiness. She exemplified how to celebrate life.

Now, what have I missed in draft 1?

Peace.

Lifted

2011-01-27T23:18:00.000-07:00

It's all very strange.

We lose those we love.
We go to work the next day.
People ask "how are you?"
How to answer?

Wear a sign?
Say anything?
Somehow continue.
Very few people know.

"How are you?"
Happy that pain is gone,
that spirit is lifted,
that finally there is peace.

"How are you?"
Relieved - there is some type of closure.
Sad at unfairness.
Sad for the family.
Sad for the girls whose mom cannot make everything better now.

"How are you?"
It all weaves together.
Only a few people know.
It is strange that so many people experience this all the time.
We all ask "how are you?" and how does anyone know how anyone really is?

Strange times.
One friend continued to lose all.
The other gained.
For one friend there was nothing to help.
For the other friend there was something new.

One was too weak to remain in this world.
The other began the next day physically stronger.

One "end."
One "beginning."

There is peace.
There is pause.
There are silent times.
There are joyous memories.
There is love.

"If these walls could talk; if these stairs could sing; if these floors could tell their tale, they'd say just one thing ...

What the world needs most right now is the best out of you and me."

She would want that.

Peace.

Stories upon Stories

2011-01-23T15:42:00.000-07:00

With each skiing trip it seems I could tell 1,000 stories or more - good, bad, interesting, ...

- How does everyone make it through the worst weather on roads and then spin out when the roads finally improve?

- How is disability "dropped at the door" every time I go skiing? How does the BOEC (adaptive program) do that?

- Volunteers at the BOEC - they give so much - they give it weekly - they are amazing.

- Let's just ski. At some point, the instruction must atop, despite bad habits, and the skier must just ski. I did that. It was ugly, but I finished.

- There are lots of helpful people out there. They hold the door and wait while I meander up the sidewalk. They are the hotel staff who quickly make staying up there worth it by helping. I'm grateful.

- My daughter told me to just take the walker into the hotel. No wheelchair. I did it (see previous note on hotel help!)

- Another blog could be written on how we treat each other. There is so much kindness. On the roads, there is so much anger and chaos which is probably why there were so many spin-outs, emergency lights, etc. Even after seeing all this, there were still angry people doing things that could result in more road problems.

- I was listening to a radio show on how the AZ shooting means we're all going to think about treating each other better while I was driving through the behavior in the previous bullet point. Really, it's not just the politicians. It's everyone. Think about it.

- As I was ending day 2 of great skiing, I thought of my friend Jean Ann. "You could have won that race." That's what went through my head as I was tired. Each turn - I wanted to win it. And then I let go at the end and went straight down the hill to finish. Imagination works wonders. I saw her smiling at me. It's good I had goggles because there were tears.

- I finished day 2 by seeing Jean Ann smiling. Then Lori was right in front of me. It doesn't get any better than that.

- "Just take the helmet, Beth." Yes! I get my favorite helmet. It's really a piece of junk probably. But it's the "lucky" helmet, and I love it. So I have my totally prized, probably junky, all scratched up, lucky helmet.

- Through the good, bad, and ugly, God was there. And I bet God, assuming a sense of humor, laughed quite a bit.

- Each of these bullets could be a longer story, but it's time to stop.

Pause.

Peace.

Never say goodbye

2011-01-20T21:47:00.000-07:00

"You could have won that race. You know that, right?"

A memory I'll always remember.

I was second.

Overwhelming praise for first.

Condolences for third on down.

Lost in the shuffle.

Except by that unique person, that coach who said "Beth?"

I am Beth. That is Jean Ann.

I have MS. She has ALS.

I will ski tomorrow. She will see her daughter perform one last time.

We will both win.

She will end her baptismal journey.

I can't say goodbye.

"Beth?"

Her words,
her caring,
will remain with me always.

Peace.

"Repeat after me ... "

2011-01-18T21:40:00.005-07:00

... a short part of the book "Just Don't Fall."

"First thing. Repeat after me. Life is tough.
That's the bad news. The second part is the good news.
Life is beautiful."

Josh Sundquist was 9 when life changed. Cancer took his leg and his dreams of playing soccer, making the really good team, getting the cool jersey - all gone and he is told he won't be able to play soccer (at least not like he did) again.

We have different stories, but it's interesting. Before my diagnosis, I remember my doctor (the only one who ever seemed to think this was MS before the day it was diagnosed) telling me I needed to get used to the fact that I might not be able to run competitively again.

What?!! You have GOT to be kidding me - ouch. Similar reaction.

Loss.

A search for something, some new goal, some way to define oneself.

Josh Sundquist found it in skiing. He made it to Terrino in the Paralympics. It wasn't an easy road to make it there. But he found something, pursued it, got it. He got the jersey (the book is really funny in describing things like his desire for this).

I found it interesting to read how he discovered skiing. He "got it" (the feeling of it) right away. I also discovered skiing - not in quite the same way - but I got to get outside again. I read about his strategies - how he was taught - to ski. And I recalled someone giving me the same strategies.

But there was a difference. Josh saw skiing as a complete replacement (almost) to soccer - something he could finally do well. He could pass people - he could be good. He could let go.

Although skiing isn't a total replacement, or even remotely close, to running for me, I think I got it. I had to let go. And I did that the last time I went skiing.

Different disabilities, different lives, but common themes. He goes through life telling himself there is not time to fail. He can't let people down. This is sounding familiar - different reasons.

He is told...
"What if you could succeed if you failed? What if you did your best, and that was enough? You gave one hundred percent effort, and even if you didn't reach one hundred percent success, you accepted it, because there's nothing you can do to change what's already happened."

I skied. It wasn't perfect. For the first time I fell by carving too much - being too aggressive. One hundred percent, finally. It felt great.

"Life is tough.
That's the bad news. The second part is the good news.
Life is beautiful."

Yes, life IS beautiful.

Peace.

Provigil and Nuvigil - the difference - MS

2011-01-14T23:33:00.000-07:00

Writing this in the off-chance someone is being switched from Provigil to Nuvigil, maybe has MS and maybe doesn't.

I was and am back on Provigil. When I searched for "Provigil Nuvigil difference" on the Internet, I mostly found things by people with narcolepsy who were on either one with mixed reactions. I found a bit on MS and just Nuvigil, mostly positive. But who is being converted, why, and how's it going for people with MS? There's not much there, and experiences will differ, but here's mine.

Cephalon is losing its patent for Provigil in 2012, so the price of it has been increasing. Meantime, Cephalon is heavily marketing Nuvigil which is a single isomer version of Provigil. Nuvigil is stronger than Provigil and acts longer, so everyone is going on it. It should work better. But for me? It backfired.

I started Provigil as an off-label drug for MS-related fatigue, although a small clinical trial did show it works for MS. Provigil is also used for sleep apnea, which I think I have/had, but Provigil changed that. Nuvigil sounded good as well. But it's not exactly the same as Provigil.

I knew pretty quickly that Nuvigil wasn't working for me. Sure - I was awake - but I was in a cloud at best. In the afternoon, I drank coffee like water and still wanted to fall asleep. I couldn't sleep - it was horrible. People at work knew about this. They said I looked tired and I was - I was a walking/wheeling zombie. And I was depressed. When you go off Provigil, this can happen, and it did. I had 2 really bad days before I just wanted to stare at a wall. I didn't really feel like the medical community believed me, but I knew I wasn't me. I fought to get back on Provigil because physically as a zombie I was also getting worse.

It took a bit of time, but I got Provigil back. And quickly, I was fine. Has this happened to other people? Drugs are so tricky. Does the combo of Provigil and Ampyra mean anything.

Back quickly, and today another Ampyra breakthrough for me. I keep walking more and more. I'm getting stronger. And I believe everything helps. Leaving work, I wanted to scream "YES!" at walking further, again. I take Ampyra; I take Provigil; and I work very hard on a bunch of boring exercises. I got in my car and turned on the song that reminds me that everything is possible - just show people. I'll put part of the lyrics after this post. It's from Curious George. I'll turn the whole thing upside down, from Provigil to Ampyra and everything I can find.

"I want to turn the whole thing upside down
I'll find the things they say just can't be found
I'll share this love I find with everyone
We'll sing and dance to Mother Nature's songs
I don't want this feeling to go away."

"Who's to say what's impossible?
They forgot ... "

Peace.
--------------------------------------------------------------------
Upside-Down Lyrics

Who's to say
What's impossible
Well they forgot
This world keeps spinning
And with each new day
I can feel a change in everything
And as the surface breaks reflections fade
But in some ways they remain the same
And as my mind begins to spread its wings
There's no stopping curiosity

I want to turn the whole thing upside down
I'll find the things they say just can't be found
I'll share this love I find with everyone
We'll sing and dance to Mother Nature's songs
I don't want this feeling to go away

Who's to say
I can't do everything
Well I can try
And as I roll along I begin to find
Things aren't always just what they seem

I want to turn the whole thing upside down
I'll find the things they say just can't be found
I'll share this love I find with everyone
We'll sing and dance to Mother Nature's songs
This world keeps spinning and there's no time to waste
Well it all keeps spinning spinning round and round and

Upside down
Who's to say what's impossible and can't be found
I don't want this feeling to go away

Please don't go away
Please don't go away
Please don't go away
Is this how it's supposed to be
Is this how it's supposed to be

How we get to "hate"

2011-01-10T17:37:00.001-07:00

I've been thinking about something and the best way to deal with it, or "let it go," is sometimes to write about it.

I was so proud to use my walker to go to an event recently. At this event, I've always been seated early, because it's in an older building which isn't exactly accessible. I knew "something" had happened in this that involved me, but wasn't sure what. Now I know.

"Are you going to seat her first, AGAIN?!!" a person I know asked out of my earshot. The person seating everyone said "I guarantee you that Beth would LOVE to be able to sit up in the leveled seating. But she can't."

Yes, Beth would love to have legs that worked, to wait in line to see which spots were left. Yes, I'd rather have that.

While I know things like this are said, and others like "you're so lucky to get close-up parking" or "I want to go to the amusement park with you so I don't have to wait in line," they're generally not meant to be mean natured. I assume this because they are said directly to me and the person saying them is usually joking.

I didn't expect it, but this hurt. Really? After the explanation the person still didn't "get it." So it ended, and everyone went away with the same opinions. So instead of learning to get along better, things remain as they are. And I wonder where we go from here, when education did nothing.

There will always be a small group or an individual that doesn't "get it." I wonder what their story is. I wonder why they feel the way they do.. is there something I don't "get."

But by this whole event, we are left, as I see it, with no one happy, except me for using my walker at the event rather than the wheelchair. Actually no one happy, really, is quite a number of people upset. People are mad. And in society, if we have this madness everywhere, it can lead to hate. Hopefully hate is just in extreme cases.

Then I head way off-track and think of driving - lots of mad drivers. That can lead to "road rage" which can be hate.

So can we move beyond this? Can we improve? We have to - hate is not a good thing. Somehow, people have to show a lot less hate. We have
to really demonstrate it. I think it's called forgiveness and love.

Peace.

How Strong Women Pray

2011-01-04T22:24:00.000-07:00

I met Bonnie St. John at our national diversity conference, where she was a featured speaker. The night prior to her speech, she came and talked with a small group of us at dinner. There she gave me some advice about how to think of my career, and we discussed where I work, which she was able to use for her presentation. She was so genuine, enthusiastic - a great person.

She spoke and was incredibly effective, not using any notes. We were told of her accomplishments - Harvard, Rhodes scholar, Parolympic skier, and more. I bought her most recent book, "Live Your Joy." But then I discovered she also wrote "How Strong Women Pray," so I bought that.

It's a book I didn't want to stop reading. In it, Bonnie interviews and tells the stories of a famous set of women and how they pray. They include Barbara Bush, a survivor of Rwandan atrocities, a college president, etc. Into their views on prayer she weaves her story of learning to pray. Her successes in life seem to be ways to block a past of incredible horror she experienced as a child (read the book!). She talks through how she finally recognized the block and uses prayer in her own life.

In reading, I found myself pulled into her story, but also the various ways that people pray - alone, as couples, in groups, etc. I thought of how I prayed, but I learned how I could "better" pray (if that makes sense). I was brought up on set prayers - like the Lord's Prayer. Later I prayed outside formal prayers - typical of many kids, I would pray to run a race well, to get a good grade on a test, etc. As an adult I seemed confused of the mixture between set prayers and other prayers. And the other prayers changed, because God wasn't the decider on me winning a race or getting a good grade on a test. I wasn't quite sure when to pray - it can be any time.

Near the end, Bonnie has a prayer group (I've never done this - it still seems a bit odd). When she leads, she does something a little differently - she asks 3 questions, so I've thought how I wouls answer those...

Tell a story about the power of prayer in your life.
Just diagnosed with MS at age 20, I went to get help from the leader of our small Episcopal church on campus. We sat in the basement of the chapel with his secretary. He lead the prayer. I don't remember the prayer. I do remember it being the first time I felt the presence of God. I knew MS was going to be tough, very tough, but through our prayer I knew God would always be with me.

How have my prayers changed over time?
As from above, they went from formal prayers to more informal prayers, they went from praying for specifics to praying for guidance, and giving thanks. They can be talking to God whenever I want. The other day I struggled to get up from a chair (this can be difficult). I wanted to pray "God, please help me get up from this chair," but changed it to "God, help me to believe that I can find a different way to get up from this chair, because the current way is NOT working." And I found a way.

What support would I like in my prayer life?
More time for prayer, for conversations with God, for times when I can just "be." Many people find those times when they are in nature and I have to agree.

So the book offers so much more - in a way it took me on my own prayer journey. I thought of obstacles in my life, how I used prayer, how I can use it. And the strength on Bonnie St. John to open her childhood makes her a much stronger woman than all of her other accomplishments.

Maybe I'll be lucky enough to meet her again one day. She lives her joy, and I should start that book next. I'm praying to find my joy again - it's a bit lost; it's painful; I'll struggle briefly. But the joy will return. I believe that.

Peace.

How we pray

2011-01-01T22:11:00.000-07:00

Prayer...

Different for everyone...

Alone for me, in silence.

I think a lot while I pray.

I "talk" to God.

I give thanks.

I ask for help.

I don't ask for specific things (normally).

I ask for guidance.

I ask to be accompanied.

I ask that I might find clarity in so much.

I ask for the peace to know that God takes all I give and do not give, without me asking, and gives me grace.

Peace.

The "rules" according to Beth

2010-12-31T16:01:00.000-07:00

The most common question I get when doing any training on disability awareness is how/when/where it's appropriate to ask someone if they would like help. I actually don't think I've done a training where this hasn't been asked. Friends ask me too. So, apparently everyone is unsure. And people with disabilities, or at least me, are not good about asking for help because then we're afraid we'd be perceived as weak (see a previous post on this).

The hard part is that there is no "right" answer because everyone is different. But here's what I think.

Anyone can always ask me if I would like help, just like anyone can ask anyone else if they would like help for whatever reason. My mom and I have frequently discussed HOW to ask. I think if a person says, "Would you like any help?" then that's fine. And after that is when things get tricky.

If the person says "no," then generally they want to continue and not be asked, "are you sure?" and other follow-up questions. For me, that's because, if I'm putting my wheelchair together and say "no thank you," then additional questions are throwing off my routine and creating frustration.

I think I understand why people ask follow-up "are you sure?" questions. My mom was born and raised in Minnesota. If you go to her house for dinner and she asks you if you would like seconds, "no" just doesn't do it. The thing to do is for her to ask "are you sure?" and then if you say "no" she may give you alternatives, or tell you what's for dessert! So follow-ups to "no" are common for many things, but it doesn't work, generally, in the world of people assembling wheelchairs and doing other adaptive things.

Then if someone does say "yes" to helping, it gets tricky again. People want to help (my mom will bring you all the food you want!). But the person who wants help generally knows what that help is. So, they want help, but if possible, let them direct you. My wheelchair has to go in my car so that I can get it out again. If people grab things without asking, well, first I could be leaning on the part, lose my balance, and hit the ground. But if a person lets me tell them what to do, things will go better. It does sound selfish, but disability is tricky - well-intentioned help can go wrong and no one wants that.

Today I went to Target. A woman was next to me in the store and said "you should try one of those power cart things." She somewhat laughed, but it was that "I'm really uncomfortable and don't know what to say" laugh. That has nothing to do with helping, but fast forward to when I was leaving. The parking lot was snowy - slip and slide. As I was getting my trunk open, 2 guys asked me if they could help. I've decided that's ok in snow and ice - I give up being stubborn and my shoulder thanks me because in the snow, I'd be using it more to help with balance. I said, "sure." And it was perfect. They just stood there, and I said "Could you..." and it was somewhat of a team effort. It was awesome.

I said everyone is different. A friend of mine wants people to wait a bit to see if she is struggling before asking her if she needs help. Another friend says only offer to help if you feel comfortable asking. I say the follow-up "are you sure?" questions are really hard. So I can give my opinion, but like everything else, we are all different.

Today, I wasn't even up yet, so I wasn't struggling, but I knew I would. I used to hesitate accepting help more before I yanked my shoulder, so I have learned, and there are still times I should accept help when I don't.

I struggle with ending this post because so much could be said about the woman in the store and other things that aren't quite related. So I will end it here, with the example of what happened today, where 2 people asked nicely if I needed help and it all worked. And then we all wished each other a happy new year. Ask all you want (once per "activity"). You don't know when someone will say no or yes, but respect it. If someone snaps "NO!" there may be a reason. But please keep asking. I wish I were the one who could ask. But since I'm not, thank you to all the people who ask, anytime you ask, whether I say yes or no. And thanks to those who help.

And with all that said, as the 2 guys said, happy new year. Let's all help each other however we can.

Peace.

Resolutions

2010-12-30T17:44:00.000-07:00

I used to make the new year's resolutions, but they were always so impossible, so I stopped. Now I'm thinking, instead of impossible things that are checklist types of things, what about concepts? But the first one is a checklist thing - and it somehow seems impossible. But here they are - have to document them somewhere...

1) Finish my Masters degree.

2) Find more time to pray and let God in.

3) Keep trying to be as strong as I can be, physically.

That's it. It seems so simple, but it's plenty.

Peace.

Nothing is the same

2010-12-29T20:50:00.000-07:00

Today I showed up at physical therapy. My therapist took one look at me and asked "are you tired?" It WAS 5:30, but...

Backtrack 3 days...

"Please God, don't let this happen to me again. I can't go through this again. I don't think I can do it." Tears.

Backtrack about a week. "Hi Beth. We're switching your medicine. You see, the drug company's patent is about to expire, so they have created basically a new version of what you have. We're switching everyone to that until the generic becomes available, and then we can switch you back."

Well, if it's the same thing, then I guess it's fine. This medicine helps with fatigue. Without it, I am super tired. Once I went off this medicine for a few days. And then, Beth went away and was replaced by someone who was extremely depressed. It took months for Beth to fully return.

Nothing is the same. Everything, to some degree, is different.

The dosing for the new medicine is different. This past weekend I started the new medicine. And it's not the same, because, nothing is the same.

Today I was told to increase the dose.

I hope that works.

I haven't felt the same. I've felt tired. Beth is still here, but it's a somewhat subdued Beth. Somewhat subdued Beth isn't really Beth. This Beth likes to just sit and look at the walls. But it IS still Beth, because this post is being written, as opposed to me being off in a corner, crying.

I know God can't change this, and that God is with me through this. And everything will be ok.

And yet, I think I'll still ask God tonight for taking the whole pill to work.

I guess I'm being difficult again (see earlier post). But, as per earlier post, define difficult. People need to listen and respond, rather than pass something along to someone else. This will all work out. There will be fewer tears. I'll be happy soon.

And God will be right here with me along the way.

Peace.

Favorite Carols, resolving, and not (resolving)

2010-12-26T17:04:00.000-07:00

Two part blog...

Part 1:

It's always been clear to me what my favorite carol is... Once in Royal David's City, and I've been contemplating why this is. Here's the first verse (part of it is that I like the lyrics):

Once in royal David's city
stood a lowly cattle shed
where a mother laid her baby
in a manger for his bed.
Mary was that mother mild.
Jesus Christ her little child.

A carol can be defined as a joyful religious song celebrating the birth of Jesus Christ. Now if you don't know this carol, you'll have to trust what I'm saying. My favorite parts of this carol, and why I like it, is how it resolves (defined as "settles") at different points. It resolves in pitch, in the first line, from "in" to "royal," and in the second line from "a" to "lowly." It's a musical thing - when I break it down, I might wonder where this song is going and then it resolves from the second to the third syllable in each line. And in a sense, as we move from Advent to Christmas, we have resolution, or settling. We have been waiting, and Christ is born. And it's truly beautiful.

Part 2:

I thought everyone had a favorite carol, so I started taking a survey and I've been wrong - many people like many carols, for whatever reason. When I look at most carols, they resolve. And this led me to this strange thought that in life, or in death, there is not always resolution.

Perhaps this thought is because of the unexpected, sudden passing of my aunt. I was wondering if she had a favorite hymn but she couldn't be a part of my poll. So much of her passing is this feeling of things not being resolved - she did "go out on top," but ??? As our family went through Christmas, things were a bit odd. I wouldn't normally think "what was Aunt Dot's favorite hymn?" as I considered mine. I wouldn't have strange thoughts like that I'll never receive her Christmas card, although they were probably done. I probably wouldn't bring her into as many thoughts as I have had. And because of the unexpected nature of the whole thing, my thoughts wouldn't be so much of the kind of "what if?" or "I wonder." Christmas seems to "resolve" so much and I've been in this strange sense of inconclusiveness.

Part 1 resolves and part 2 has not, although over time it will. Perhaps in a strange way, the words seem to lack of resolution the following carol. Resolution seems questioned.

I wonder as I wander out under the sky,
How Jesus the Savior did come for to die.
For poor on'ry people like you and like I...
I wonder as I wander out under the sky.

I'm also wondering, as I wander a bit.

The doggy in the window

2010-12-20T19:37:00.000-07:00

In Advent I always think how I should "pause" and reflect more, just take that time. I'm doing that - it's for a somewhat different reason.

She went out on top - my aunt. She loved life and was busy all the time, loving everything she did, always thinking of others. She'd always tell me she loved my Christmas letter, and couldn't wait to get it each year. But what wasn't supposed to happen did happen, and although her parents made it to 97 and 99, she ended her baptismal journey suddenly, without any warning, at 73. I wish I wasn't so late with the Christmas letter this year.

I struggle with not understanding this at all - why so suddenly? I don't get it? Why at the top of her game? Perhaps that is best in this case - we can cherish the memories, too many to name, but here are a few...

Memories
* Lori as a baby, and my aunt singing "how much is that doggy in the window?" to rock her to sleep. I'll never forget that.

*The gift of tickets to Lorie Line in Minnesota for my birthday - and now I continue going to Lorie Line concerts. My last email to her was the picture of my Lori sitting next to Lorie Line onstage.

* Minnesota - when I lived there she was 2 hours away, but she checked on little Beth, just out of college. "Bethieeeeeeeeeee, this is your Auntie Dot." OK, really, she could have stopped at Bethieeeeee. No one else said my name the same way and never will.

* Fall leaf trips in Minnesota. She would pick me up when I lived there and we would spend the day looking at the beautiful changing colors on the Mississippi. And she would say "Ohhhhhhhhhhhh...." with the Minnesotan accent to the max, so you may only understand "Ohhhhhhh..." if you've heard the accent.

* "Beth, I was on that medicine and you are like me. You need to stop taking it." She was right. We were similar.

* "Beth, you should become a member of this church. You keep coming back here." Right again.

* Random articles in the mail that she would send for me on MS.

* Memories with cousins and my mom, her sister. Get the sisters from Minnesota together with "Ohhhhhhhh..." and it can be quite comical.

So, memories. There are sad times. There are tears. This was unexpected. And so, during Advent, I pause with sadness but also memories.

Peace.

"Difficult"

2010-12-16T21:59:00.000-07:00

We were discussing service and maybe how to incorporate a "difficult" patient into this. I said I thought we wanted to be careful with the word "difficult." Well... someone who chats a lot was given as an example. So I continued to think. This will end up as me telling my story to the few people who read my blog.

Difficult... interesting... from whose perspective. If I am difficult have you considered why - have you flipped the coin? I'm as much to blame for this - I may consider someone difficult.

Anyway, my story as the difficult patient...

This woman just had shoulder surgery. She has MS. We can't move her because her legs are out of control. She's difficult. I guess we can put a moveable toilet by her bed. Maybe then she won't be as difficult to move.

I'm in the hospital after shoulder surgery. Hasn't anyone been trained in how to move someone who doesn't have good use of their legs? Isn't there a procedure for moving people like me? Something is wrong, yes, but I've been knocked out and I don't get it.

Physical therapists arrive. Difficult patient can't stand. Her legs just shake. She has MS - the best place for her is a nursing home. She won't do that. Come on - she has MS - doesn't she "get it?"

Oh, I'm coming out of this now. I don't think I've received any of my normal medicines and so my legs are shaking. Where is a doctor? These people who don't know me and gave me 2 minutes want me in a nursing home due to MS. No way - something else is happening.

(that night) This woman wants medicine but it's not what her prescription says so she can't have it. Won't she just go to sleep? Why won't she just use a bedpan? She is difficult.

Oh, I'm getting it. I haven't been standing so nothing is working and I don't think I've been getting my meds. Why won't they give them to me? My legs are spasming. I can't sleep without my meds.

(next day - difficult patient is transferred) OK, we have a new lady here and she is difficult. She doesn't want to be here. She wants medicine and we can't give it - it's not what her prescription says. It's 1am - can't she go to sleep?

This is going to be a long night. I haven't had meds. They gave me 2 out of 10. The doctor said they could give me 2 more. Woo hoo - we are now at 4 out of 10. Look at my leg - if it were long enough, it would jump to the ceiling. I am in hell, clearly. There is no escape.

(2 days later) What?!! The difficult patient escaped, came back, and no one noticed! She must be telling a lie - she really thought she could leave? Now she wants to go home? We're going to have a meeting to discuss her!

OK, I've had it - I'm going home. I can do what I need to do. I know this because I left and found out I'm able to do things. I didn't know I shouldn't leave. I am out of here - then no one can tell me which rules I'm unknowingly breaking and I can take my meds as I know how to take them, and I can work things out.

The end.

Clearly the difficult patient wrote this. There are other "sides." But has anyone asked what she thinks? No, not until the end. Who learned what from this?

Define difficult.

Do you see what I see?

2010-12-13T21:45:00.000-07:00

A familiar tune went through my mind last week... at the school bookfair...

"Do you see what I see?"
I see stares from children
What do they see?
They see, I think, that I am different.
I want them to talk to me before their parents snatch them away.
I want them to see it's ok,
the wheelchair... or the walker... or whatever...

"Do you hear what I hear?"
I hear whispers. I hear "don't stare."
What do they hear?
They hear, I think, that I am different.
I want to tell them it's ok, the wheelchair...
I want them to hear it's ok,
the wheelchair... or the walker... or whatever...

"Do you know what I know?"
I know I'm at the bookfair, just like them.
What do they know?
They "know," I think, that I am different.
I want to tell them it's ok, the wheelchair...
I want them to know it's ok, it's good,
the wheelchair... or the walker... or whatever...

Because you/I see... hear.. know...

"Said the king to the people ev'rywhere:
Listen to what I say!
Pray for peace, people ev'rywhere,
Listen to what I say!
The Child, the Child
Sleeping in the night.
He will bring us goodness and light.
He will bring us goodness and light."

And all the other stuff is, really, minor.
We are all children of God.

Peace.

One

2010-12-10T22:43:00.000-07:00

One final finished.

One class finished.

One more Spring class.

One more Summer class.

One Capstone Project.

One Masters degree within reach.

One person says "You know Beth, not everyone even gets a Masters degree." True. But in my family, everyone gets more. But my One would be the impossible dream.

One God, or three in One.

One Advent.

One Savior.

It seems so simple, yet is so complex.

One.

So far, yet so close.

Peace.

The boiling point

2010-12-06T09:46:00.000-07:00

Someone once gave a talk on why people may appear to "snap" and the person who is the recipient of the "snap' may blame it solely on ethnicity, race, disability, etc - really, any stereotype - put the blame there. I thought, yes, but why?

Think of a pot of water set on the stove to boil. It gets hotter and hotter and little bubbles start and then "Snap!" You have the full boil. So for me, say, with a disability, it's not one frustration that makes me snap. It's a whole series of little things that continue to add until I can't take it, and unfortunately, someone may receive a big dose of how I feel.

It was my birthday on Friday, which I actually celebrated by skiing the previous day and will celebrate tonight by going to a concert. But the birthday started with me running a bit late for work. And the series of little things happened. I forgot my medicine, but that's ok because I could go and work from home in the afternoon. I took my main walking medicine, which sometimes makes me feel like not eating, and I felt really awful that day - no food for me.

I got to work and all but 1 of the 20 accessible spots were taken. At least there was one, so I got out and started to take my wheelchair apart. A (nice) car zoomed in next to me - into the area of those lines put between accessible spots. A lady quickly got out of her car, in high heels, came back, and said happily, "Can I help you?" No, but thanks for asking. "I'm going inside for just a minute and I'm in not hurry, so it's no problem." (happy voice) She doesn't have a tag on her car, there is other parking, she's not in a hurry, so I nicely say, "you know, we really don't like when people park on those lines." She was receptive - the happy lady moved her car and I could open my door to get my bags. But the water was getting a bit hotter.

After lunch I headed home but my car needed gas. I decided to be "helpable." I mean, gas stations have all these signs that they will help people who have trouble or cannot pump gas, and the last time I tried to pump gas, I decided I could probably hurt myself. Gas station #1 said beep 2 times. That did nothing, but the phone # was on the door so I called. "No, sorry, can't help you." Gas stations 2 and 3 - well, I'll just say no one was paying attention and there was no phone # listed. Gas station #4 - signaled the guy inside - he wanted to help, even though he was the only one working. He found a way to get it done - now I'm further from home because I know if I go further north, I'm more likely to get help.

I drive home, big construction me slows down. I have a meeting on the phone at 2 that I think I may miss - didn't plan on 4 gas stations, but I plan the sequence... get inside, get medicine, find phone, computer, etc. I make the call.

Next: get Lori to piano and dance - little frustrations. The pot boils over but at least I recognize it and just don't talk. Lori wants to know why I'm not talking. I can't explain it's because I'm done.

I get dinner and bring it into her dance dress rehearsal. There's salad and carrot raisin salad, but no fork. And I'm finally hungry after eating almost nothing all day. I can't take this anymore so who knew salad and carrot raisin salad could be eaten with fingers?

Note that throughout this day God is taking quite a beating - it's amazing that there is forgiveness, because I'm saying "God, you have GOT to be kidding me!" And then throughout the gas thing, I'm almost in tears asking God why this is so hard and why no one is helping and why no one cares. It's not true that no one cares, but it sure feels like it. And God, really, could you give me a break somewhere here? I have just had it.

The break comes when Lori comes out of dance. "Happy birthday, Mommy!" We go home. She has been working on a "book" about people with disabilities. It's very sensitive. From her vantage point, she communicates so many of my feelings.

"Mommy, what can I be when I grow up?"

"I don't know, but I hope you can use your creativity, the love you have for music, and your happiness. I think you can do something great."

She really can - I think she turned off the stove so the water stopped boiling.

Peace.

Drop it at the door

2010-12-03T22:46:00.000-07:00

I thought of titling this "Hitting the slopes," as it's about my first day back skiing (pre-bday celebration, because today, my bday, was packed with other stuff). But then I thought it's not really about skiing. I'll explain.

As I awoke that morning, I thought did I really want to do this? I was comfortable in bed at 5am. But I got up, and out I went. Up the mountain I drove and as I exited the Eisenhower tunnel (gateway to the mountains for me), the beauty of the mountains was stunning. Clouds of pink slightly covered mountains. Yes, this was going to be worth it.

Perhaps the best moment of the day was entering the office in Breckenridge, the BOEC office - where people who go to do adaptive skiing. And it seemed almost everyone was there that day. All my friends - go through those doors and leave disability somewhere else. The BOEC is where to go to realize abilities. It's where to go to get infectious positive vibes. Smile - everyone else is. How are you How was your summer? Everyone is equal - disability or not. It is hard to explain - these are some of my favorite people. So the day was not mostly about skiing - it was about people. I wasn't expecting that.

My instructor, Charlie, he's one who found me when I struggled to see what this former athlete was to do with MS. Charlie gave me a ski lesson years ago. Then I had Lori and a few years later, returned to ski and was put with Charlie again. Charlie got me skiing, got the athlete back, suggested I get into handcycling. It's all about the people. For this, I am grateful.

The skiing itself yesterday was not impressive. I started ok, but mid-morning I was back to an old habit which only serves to hurt my shoulder. By lunchtime I was discouraged. Back to the office where the focus was positive. But I was discouraged. Enter Michael. He gave me a ski lesson last year. What he sees in me is different. What he clearly sees is this person who, no matter what, will beat herself up. Nothing is ever good enough. He told me I need to focus on being positive about myself, rather than just beating myself up. He said, "You should get up every day and think something positive about yourself." He's right. The infectious positive attitude is everywhere in that office and he has it too, but I'll fight it.

Back in the afternoon, things were ok - not great, but ok. And it is the first day of ski season, so not everything can be perfect. On the last run I was getting out of control. I was trying to crash because things were so out of control. I was headed to the right but couldn't stop and couldn't crash. And all at once, I heard, "Beth! Look downhill!" In a split second I did just that. Snow flew in my face. I turned left and came to a stop. Whew - that was a close call. I did it! Apparently it looked cool, like I knew what I was doing - carving the slopes fast, in control. The beauty of out of control, but it was corrected in an instant.

And so I will go back. I'll try to improve at skiing. I'll try to find some positive thoughts. Mainly, the friendship and sense of community is key. Drop it at the door. Smile. Everything is possible.

Peace.

A look back, a look ahead: Advent

2010-12-01T13:35:00.000-07:00

It's been 3 years since...
- medication "oops"
- resulting severe depression
- pulled out by church, somehow by Advent

The memories of depression slowly fade, though I'll never forget the pain. And each year the memories strangely return on a day like today.

And so we're at Advent again. We're waiting, anticipating, hoping.

And today, I'm...
- stressed, but ok
- uncertain, but holding onto faith that things will be ok
- weak physically, but then again, much stronger

And the hope that brought me back 3 years ago remains today in a different way,

because as I wait, anticipate, and hope,

occasionally I feel

Peace.

Winging it

2010-11-29T22:45:00.000-07:00

It is so true as I look back on my life - winging it is perhaps when I do best, or at least better. So there was Sunday at church when I hadn't practiced anything but the psalm and everything went better than usual. I had to "wing it," and it worked.

Random decision the day before to just go to a track and walk once around - a 400M - but I made it around - incredibly slowly.

Whenever there's pressure I won't do as well.

In high school, there was a piano concerto competition where I competed - at a more elite level so no chance of winning. I usually didn't perform my best in front of audiences. But there I had no shot. My mom actually taped it so I can now listen. This girl who could come across as timid, or lose focus in a piece - this wasn't the same girl. It was beautiful (Mozart - my favorite) and it's almost as if the accompanyist, my teacher, was thrown offguard that I was on top of this thing. You can almost hear "uh oh, she's serious!" I didn't win - as I said, that was impossible. But I "winged it" - why not just throw my best out there and take a risk? When I did an easier competition where I should have won, I lost all focus.

Same concept with the flute. In 11th grade I practiced like never before - but nothing was sounding like I wanted, and I didn't make all-state. Fast forward to senior year - forget the practice - wing it - and I made all-state.

And there's athletics. Our team was great when we won state cross country. Perhaps it was because we weren't supposed to win and there was no pressure - we were just "winging it." The next year - when "no one can touch them," we lost. Too much pressure.

Individually, my best race was always the Bolder Boulder - love that race. All pressure was off, the track season was done... I just ran, and I ran fast. Definite "winging it."

As I move forward with my career, I notice the presentations I used to memorize - well, there just isn't time. I have to wing these things. And they are way better - especially the disability ones - because they come from the heart, and I don't have time to get nervous. I just go. I love that.

I haven't ever "winged it" in skiing - I am always overthinking. So perhaps that should be the goal for this year - "wing it." But if I make it a goal, it won't happen. So I think I'll try to approach this ski season without goals. That's difficult for me. I wonder what will happen. Someday when I'm not paying any attention, the fear will go away and I'll really ski, on my own.

Peace.

Giving Thanks

2010-11-25T20:33:00.000-07:00

Thanks for...

God being with me on the big journey of life, and so many little journeys along the way.

Family and friends - all their support.

The gift of Lori.

The gift of being stubborn (most of the time).

Having more than enough, always, even when I don't think so.

Ampyra.

Not giving up, even when I almost did. God's presence there.

People who "found" me, believed in me and still do, and showed me I could still be Beth, MS and all, even when I do not believe.

Being able to smile when I really want to cry.

Being able to cry when I really wish I felt like smiling.

All the people who I love but whose time on earth has ended.

God being with me, reaching to me in times of most trouble and in times of most joy.

And I am thankful for times of

Hope

and

Peace.

Jobs and Houses

2010-11-23T22:15:00.000-07:00

It's very interesting, really. Consider 2 groups, and there is a great deal of intersection between the 2.

Group 1: people who are elibible for a home and work with Habitat for Humanity.
Group 2: people with disabilities who are just entering the workforce and work with ???

Can you take a person in group 1, give them a house, and say, "Here you go! Now that you have this, we have support to help you move forward. But here's your house - congrats!"

Can you take a person in group 2, give them a job and say, "Here you go! Now that you have this, we have support to help you move forward. But here's your job. And you still have your benefits - no worries - congrats!"

It really doesn't sound like this is going to work out very well. What could go wrong? Neither group knows the resources, so they may be starting with no support - they're set to fail.

Group 1 - Habitat for Humanity has a great program - I thought they just gave houses until recently. But not at all. People go through 16 weeks, 2.5 hours a week, to get ready to make the transition to that house. In those weeks, it's intense. What will help them be successful? Where will they struggle? What new resources do they need? What supports do they need?

Group 2: Today I was in a group talking about this group. The first and foremost thing is benefits. But then we seemed to skip to getting them a job... WAIT! Hold on - that's like just giving the house to someone. Are they ready? I'm thinking maybe, but many times, no. Giving resources after they get the job could create confusion.

I think of myself a bit here. I have a job. I am limited by MS. But I'm not just starting out - I've developed resources. I am used to getting up 45-60 minutes before everyone else in order to get ready. I know that for best energy during the day, I set out clothes the night before, because getting clothes takes energy. I know at work where I want to park. I know how much I need to walk at work, and that if I don't walk, life will be hell that evening because I will have leg spasms. I know I may be exhausted when I get home (though this is not as bad on Ampyra), that I can pick up my daughter and they will bring her out to the car because we have developed a system. I know that on many days, I may not have energy to cook dinner, and we'll choose the best drivethrough so I don't have to use energy. Energy is a big thing - as I go through each day, I know what I have to do and I am constantly working through things in my mind, calculating if I want to do x, then I must do y. And to a large degree, this is done on auto-pilot because it has gradually become my life. I haven't been thrown into it.

Back to group 2: before getting a job, are they ready? Do they have childcare, transportation, food, etc. Have they thought about when they are going to shop with a job, given less time and less energy?

It's not to discourage group 2. It's to say look at the successful model for group 1. And to not give the same type of thing to group 1 may be setting them up to fail. Maybe they don't need 16 weeks of 2.5 hours a week. But if I were thrown into the job world without easing into everything like I was, I would be lost.

So we address benefits. Then we lay a foundation. Then comes the first job. And then we must also recognize that some people want to advance. That's often forgotten. In the door - isn't that enough? The person has a cube and a job. It's not enough? No, definitely not enough. Even with daily, hourly, by the minute struggles, advancement may be important. And then, perhaps it's not about the pay - it may be about respect.

I hope people learned about laying a foundation today. I think it's obvious. I'm not sure others quite "get it," just like many don't "get" why getting in the door is sometimes not enough.

Peace.

The recurring running dream

2010-11-18T13:57:00.000-07:00

Ever since I could no longer run, I've had a recurring running dream. I don't have it often, but when I do have it, the dream is pretty much the same. It's very odd but very real, and I think I always remember it the next day.

It starts with me driving alone to a race, and I'm late for the race. I arrive at the race and everyone has already started. In fact, I'm so late that no one is really anywhere.

Somehow I start the race (in the dream, I skip starting and go to the middle of the race). Many of the markers telling me where to go have been picked up, and the fans are long gone. I'm on a golf course or going through a city - the location changes. But mid-race I always am lost, not knowing whether to turn right or left - not knowing where to go. And so I ask someone and they guess and the guess is usually wrong.

Somehow I also finish the race (although the actual finish is not part of the dream). Then I am with someone, looking at my time, using my time to see what place I got. And video cameras look to see whether I made it through all the checkpoints.

Then the dream ends. I wake up. I don't know how I did. I didn't see anyone I know. Somehow I completed the race although the start and end aren't a part of it.

Dreams seem, mostly, pretty meaningless, or I can map a dream back to something that happened that day, and concepts of a dream are interweaved.

So, in my dreams, I still run and it's effortless.

I'll probably never figure out the connection of this dream (like I do the others) of things that have happened that day which made the dream occur again.

But now - I have my own races (see previous post). There's somewhat of a start and end. In a sense I get lost because I don't know how far I will go that day, and whether I'll consider it "good enough" for me to win. I'm alone; sometimes I time myself. Then I show others my time. Of course, there's no one to compare it to.

But perhaps a part of the dream is that - comparisons maybe aren't what's important. Perhaps the start and finish aren't important. Perhaps the fact of just doing a race, when everyone is gone and it doesn't really matter except to me - perhaps there is something there.

Or perhaps it's a random dream that I'll continue to have and I'll never know why or what it means, if anything.

But, through this recurring dream, I will continue to run.

Peace.

The invisible line

2010-11-15T16:08:00.000-07:00

Each "race" gets longer.

Most "races" I finish.

Today there was an invisible ribbon at the end.

There are co-workers cheering me on.

"What's the goal today?"

Quietly I broke that ribbon.

I walked, and walked, and walked.

And I won.

It's my own defined race.

No big crowds at the end.

None are needed.

Winning today meant doing something that was impossible just 4 months ago.

And I suppose there will be tears of joy when no one is looking.

And somehow, out of someplace, I feel...

Peace.

Bridges out of poverty

2010-11-13T19:52:00.000-07:00

The video that ended the day was an eye opener, even after a day of learning about poverty.

7 hours on poverty - which will now be targeted for Habitat for Humanity - a great cause. But today I got to learn.

Generational vs situational poverty
Relationships as key
Hidden messages in how people in different classes talk

Getting out of generational poverty is very difficult, and in getting out, one may alienate themselves from family.

We sat, listened, and did exercises all day. We had "a ha!" moments where it makes more sense.

We ended by assessing the family in the last video - heartbreaking. A mom walks 10.5 miles each way from her trailor to work at Burger King because her car needs to be fixed. She walks through pouring rain as cars drive by her. Her son seems to have potential, but how will he get out of this, this that is the fault of no one, but a place where everyone is stuck. To get out, much is needed. Most think by providing financial assistance and perhaps food, poverty can stop. But there is so much more needed - a strong support system that is there for the long haul - people who will provide social support for the long run.

Today, another group of us learned this. Perhaps we can start to provide more support.

Peace.

Kids at church

2010-11-07T21:51:00.000-07:00

I keep thinking about what I think of kids at church, how they are part of worship, etc. It depends partly on the "church" (congregation, leadership, service, etc. - which isn't really "church" but seems the best word to use here). But from my standpoint...

I don't recall exactly what we were and weren't allowed to do, when we no longer went to the nursery, and when we actively participated in all of the church servicce. I do remember being a bit older than my 7 year old, and participating except during the sermon at which point each of the 3 of us got little pieces of paper and we colored on those.

I know now that I used to sit where there are seats outside our sanctuary, with our daughter, when she was under age 5 or so, because if she was really loud, I couldn't pick her up and carry her out - that darn MS! I was a bit jealous of parents who could just "throw" their loud kid over their shoulder, and exit for a bit. Out there, I felt like an outsider in a way, and I'm not recalling a regular nursery setup.

Then she grew old enough to not throw those fits, so we got to sit with everyone else! She would take in dolls, toys, books, etc. And for the most part she was (and is) quiet with these. I don't know what I would be like if I didn't have MS. I do know that with MS, the way to get inside the sanctuary with her was via her toys. If I made her sit next to me and not move and just sit there... well, I think she would have thrown a fit and we would have been outside the sanctuary again. For those people who CAN get their kids to nicely sit without toys and behave, I think they are somewhat lucky.

As Lori gets older, I realize that although she is playing with dolls, she has also been absorbing parts of the service. Sometimes she wants to sit and color, but I know she is listening to the sermon ("you mean the part where the pastor talks about boring stuff?") because she will make comments (which don't make me think she finds it all boring). Sometimes she will sit and listen. Sometimes she will try to follow along with the Bulletin - it depends on the day. And (aside from a couple times) I think this is ok.

Why? Lori has a beautiful creative side; she has a spark to her; she has a deeply empathetic side; she's smart, musical, and artistic. I get to say these things - I'm her mom. I don't want to "squash" any of these or make her hate going to church by forcing her to sit the same way each Sunday. It's fine if other parents want to have their kids sit nicely, and probably at a certain age that should be done - but perhaps it will come naturally (I hope so). But I want to see Lori's creativity continue to flourish; I want to see her spark remain there.

As I said, I don't know what I would think without MS. I think MS somehow made me this way - I don't have the energy to spend my time disciplining her, and I think disciplining her would cut that creativity and spark that is beautiful (mostly) to me.

Yes, there are times when it might be too much - maybe she is too loud - and then I can set boundaries.

I suppose this is also how times have changed - other parents without MS seem to do the same things I do.

We can introduce tools to "help" kids be more engaged in church. Some Sundays, Lori will utilize these. Other Sundays, I'll still let her play, which she seems to do less as she gets older. Today she was playing when the choir started to sing "All Things Bright and Beautiful." She popped right up, said "I know this piece!" (yes, Mom has played it in the car a bunch), and listened. Then back to playing.

Earlier this week, I was taking Nemo (my name for my wheelchair) out of the car. Next to my car, out of my earshot, but not out of hers, 2 girls were talking about me. They assumed I had been in an accident. They said something to the effect of I would have been better off dying than having to use a wheelchair. Lori heard this. Ouch. What does this have to do with behavior in church? Well, I think she learns things that help her with this kind of stuff, even in playing. Empathetic Lori.

It gets to what is really important, I think - sit still and "listen," or something else? I'll go with the "something else." I think Lori will be fine, and I think she will continue to learn.

Peace.

Awareness

2010-11-04T20:29:00.000-06:00

‎"Awareness requires a rupture with the world we take for granted; then old categories of experience are called into question and revised."Shoshana Zuboff (from Sojo Verse and Voice)

MS can take things away from a person slowly, so they may not even notice the small things. They notice the big things...
- can't walk as far
- foot drag
- need assistance walking
- use a wheelchair to regain freedom to go places
those "old categories of experience."

And so I thought I noticed everything I took for granted.

But I didn't notice everything at all - in fact I missed a lot, so now I can call them, the old noticeable, into question and revise them.

Now I'm more keenly aware of the smaller things I took for granted that for now, I have back...
- tap my foot
- lift my leg
- balance sitting
- stand by myself for a bit
- closing my eyes while sitting and holding hands
- sitting on the edge of my wheelchair and reaching my arms to the sky
- using both hands at the same time to wash my hair in the morning
- on my back, sitting up without having to roll on my stomach

It's like I'm being shown "these are the things you didn't realize you missed," where life was ruptured, like
- how many muscles are used to stand (stomach and back)
- multiple muscles used to lift a foot
- walking - so much to consider - bigger steps are more effective, while pushing feet into the ground while kicking with each step while lifting up with each step while also trying to stand straighter - I never thought of all these things involved in walking.

I can imagine getting up and walking across the kitchen without support, but I can't do it. The imagination of it is somehow freeing.

Mostly these things are invisible to others,
but I learn more of what not to take for granted.

And despite the horrible insomnia and off and on nausea, becoming more keenly aware seems to make life more amazingly beautiful.

And I thank God for being with me on so many journeys, including this one, a much different one than the usual MS journeys where God is there in a different way.

‎"Awareness requires a rupture with the world we take for granted; then old categories of experience are called into question and revised."

Peace.

Bonnie and aiming higher

2010-10-31T21:55:00.000-06:00

After 4 years of not flying, I flew to our company's national diversity conference this week. There were many highlights, but perhaps the best was meeting Bonnie St. John, talking with her, and then seeing her give a remarkable presentation.

In meeting her, it felt like meeting someone with whom I had gone to college, and it is difficult to explain why that is because we went to different schools.

In talking with her, she gave me suggestions on how to approach some difficult things - but they were different approaches, perhaps because of her background and life story.

Then she gave her presentation where the theme was "Aim Higher." Aim higher? That's different. I think I've encountered, either by just me, from people I know, or strangers, the following approaches given disability:
1. Aim to do something.
2. Aim (?).
3. Aim, but be cautious and don't expect anything.
4. You may be aiming higher, but we think aiming is enough.
When I enconter something other than these, I'm shocked, so often I'm lost in questioning whether I should aim, aim higher, in what, how, and will I have support given #4. Perhaps I can aim higher.

Another part that hit me from her presentation was a comparison. On the right she put a "box" of disability. On the left she put a "box" of African-American + woman. And then she considered some different data. There's a chart with employer considerations regarding people with disabilities. Some include whether they are willing to hire a person with a disability, whether they think a person with a disability can do a job, and whether employers actually DO hire people with disabilities. When standing on the right, as a person with a disability, these are typical questions. But stand on the left. What if these questions were asked about African-American women - are employers willing to hire them, can they do the job, do employers actually hire them? If these questions WERE asked, and the answers were similar to the answers for people with disabilities, there would be a societal uproar. But with people with disabilities, the thought tendency is, well, it looks a bit better, let's keep watching it. NO! Let's aim higher!

Then there was this realization. Bonnie pointed out that people with disabilities do not tend to ask for help. Why is this the case? I've actually been wondering that lately - why do I always wait for people to ask me? I get it now. I do not ask because there is underlying fear that I will be perceived as weak or perhaps pitied, when I want to appear strong and invincible. I must be perceived that way. How else can I begin to aim higher? This won't change unless society changes perceptions, but I don't see that happening. Bonnie walked a block and a half on her prosthesis for a week at a training and tore up her skin. I do similar, though different things.

Bonnie received one bronze medal for an event requiring 2 runs. After the first run she was in first. But for the second round, the course was changed and everyone was falling. Bonnie fell at the end, losing first place and ending in third. The difference? Someone else got up faster. It's a bit like a race I did in high school where I wasn't supposed to win and was in first. I got beat in the end. Afterward my coach, Jean Ann, who ironically now has ALS (which she says sucks) while I have MS (which I say sucks, though not as badly), told me "you could have won that race, you know?" Yes, I knew. I didn't have to get up faster, but I lost it right in the end because in a split second I doubted myself. That made the difference.

So we, and I, were moved. I laughed hard, cried a bit, was enlightened, had some concerns confirmed.

The rest of the conference was good. But this brought me to a new place.

And so I move forward with the belief I can aim higher.

Peace.

... Pause ...

2010-10-24T18:44:00.000-06:00

"Let us pray." And THAT is what I needed, right before being assisting minister at church today. That kind of Pause, to collect thoughts, to be "in the moment," distractions removed. I don't think I've been a part of that pre-service prayer in other times. ... Pause ...

The moment ... we joined hands ... we prayed ... I closed my eyes ... holding hands ... not losing balance (new) ... in that moment ... closing eyes, holding hands, holding steady ... God in that place ... Pause ...

It's aside from all this that life is chaotic. Recently, frustration - people do not understand - having a certificate, something official - it doesn't qualify someone to decide what is best for people who have disabilities. But clearly, many people think they are qualified to make decisions for us - which would be fine - if they asked us - especially when we repeatedly offer to give guidance. And it seems that most places I turn, there it is. There's a flyer with a guy going off a diving board, launching himself from a hospital wheelchair, doing a cannon ball. Clearly this wasn't shown to many people because launching off a diving board would be almost impossible; the guy has leg muscles (in people with wheelchairs, generally muscles have attrified); his legs are raised to do the happy cannon ball rather than down; and most people who are independent enough to launch off a diving board will have their own, "cool" wheelchair. This is just one example.

But I see the effort is there. The effort is usually there. The intent is almost always great. And you can tell which things have had input from those with disabilities and those without.

But back to Pausing...

Out on my deck this afternoon, the leaves have or are turning. They are beautiful. It's a gorgeous scene. My daughter is in the front raking leaves with the neighbor kids and throwing them in the air - laughing, smiling, no cares in the world.

... Pause ...

... Tears ...

This was not how things were supposed to be, I think. I'm not sure exactly what I mean. It's something with life. Bad day - insomnia, nausea --> not eating --> migraine.

But this is short-lived. Tomorrow I get to present with someone who is a minority in a different way than me, but she is part of the group with whom so many people with disabilities can relate. And we will discuss, and laugh, and get away to do a presentation.

And although today I have realized frustrations, I have also, finally, taken time to Pause, hand it to God.

... Pause ...

Peace.

Vacationing with MS and the new medicine

2010-10-22T22:29:00.000-06:00

See previous entry for the Mt. Rushmore moment. That was the highlight of the trip.

We're just back from vacation... Mt. Rushmore area...

Vacation with MS, or I suppose for most people with disabilities, is this mixed bag of stuff. I go somewhere fun or beautiful (or both) and love it, but at the same time have to figure out the logistics of everything - every bathroom, every walk, every interaction, every place, everyone. It's tiring and can get annoying - with Ampyra, things seemed easier. I didn't fall. Of course everyone is figuring out this stuff, but I'm going to bet people with disabilities have a bit more work. I mean, do most people, when entering a bathroom, hope there isn't a huge toilet paper dispenser right above the bar that could cause them to fall, and when it does happen, have to figure out how to avoid falling?

I know no one but my family on vacations, just like everyone else on vacaion, and people can act differently around me depending on who they are and what their background (combo of being around others with disabilities and the society in which they live) is.

With Ampyra, things changed a bit this time. We used to have to stop for me to walk briefly to prevent leg cramps. Now we have to stop more frequently and I walk much further each time. I plan how far I'll go, then start, and then decide to double or triple it. And I'm bent, but I'm working on being straighter, even when completely hunched. This trip I found myself, rather than going on short walks out and back to the car, actually walking into restaurants, gas stations, our hotel. Once my husband nicely (so he thought) parked the car closer to a hotel entrance and I informed him that no, park it further, darn it! :) And we have to take walker and wheelchair everywhere so I can walk and wheel. When I chose to walk this time, I made it - some pretty far distances. I use strategies, so there's another difference. Who else thinks as they head to their car "Break it up - make it to that line, then the next line, then the next. I WILL make it. Bring hips forward. Long steps. Kick it. Don't lean." This is all going constantly through my head. It's part of why I can get mentally exhausted.

Rest stops - can I make it in with the walker? Rephrase: I'll make it both ways using the walker - it just may take awhile. People may ask if I need help. With the walker, people seem to have a more "sympathetic" tone - with the wheelchair, it seems the tone for some reason puts me more with everyone else. It's just odd.

Hotel rooms - always interesting. At home I have my way of doing everything and it has a kind of rhythm to it. Toss that out when staying somewhere else. How's the bathroom set up? Where are the bars? Where is the shower and how is it set up? Best place for towels? Wheelchair or walker? Beds - how high - if too high, must use the walker. If too low must use the wheelchair. Is the room long enough to do some walking? Can I use something to do exercises?

Therapy - where and when? Can I find a bar where I can practice standing? Bet I looked silly doing my balance exercises in my chair at numerous tourist sites. I probably looked like I was doing a praise God ritual, along with some kind of Yoga. What IS that lady doing?!! Why doesn'r she sit back in her chair?

So, thoughts while traveling. Next week I take a plane. I hate to fly - I think it's the lack of control. And then I'll have a new hotel and a whole new set of circumstances.

After that, I think I'll be happy to be home for awhile.

Peace.

Silent miracles

2010-10-18T21:39:00.000-06:00

My husband says (at Mt. Rushmore)
"look at the eyes of the different presidents...
with the binoculars."

I look at them (the binoculars) strangely.
They're just sitting in my lap.
Why am I hesitating?
I pick them up and start to look.

They're not quite steady, but something is different.
What is it?
I try to steady them.

I realize suddenly that I'm using both hands to hold these things,
when I used to use one, which wasn't effective.
I used the other one on my chair for balance.
And then I gave up.

But now, I can see those eyes of the presidents.
I can hold the binoculars steadier.

Then I realize I am doing the same thing with my camera.
I am using both hands, without thought.

And so I take the binoculars again and refocus.
It's new, seeing these eyes.
I can see them, with more clarity.

And no one knows I'm having this profound experience,
which may seem trivial to some,
but is this remarkable blessing to me.

And so, maybe it's more profound
to be truly alone in this (these) moment(s)

when God is right there with me
holding me in a different sense
and showing me the truly remarkable simple actions

that at other moments in time
I took completely for granted.

Peace

October 14

2010-10-14T21:47:00.000-06:00

"Looks like you must have had a virus, but everything looks ok, so it must have gone away."

The 4 MRIs of my brain were all normal.

Maybe it's in my head. But HOW can this be in my head?

I run, I lean, I start to fall.

Today - October 14 - the day my college running coach made a tape of me running, with the normal start to it, then me starting to lean.

Look docs - look what happens - she starts to bend over.

"Beth, you need to be prepared for not running competitively again."
What?!! But he was right - my college doc - the only one who had it right from the start... the only one who told me what was happening, because he knew.

"It can't be MS - no brain lesions, other symptoms are normal."

Tests, tests, tests.

And I remember October 14 - I think then I sensed it wasn't in my head.

So for fun, because it's about right, let's designate the cat's birthday as October 14, so we can smile. We can laugh until our stomachs hurt and we can't stop laughing.

Decorate the house. Bake a cake. Give special tuna to the cat.

In silence, pause to remember this day. "Benson Bowl." Kenyon College. 1992. 3 long years to diagnosis. Tough years, far from home, but filled with support. That's Kenyon.

Being held. Child of God.

Peace.

Standing up, falling down

2010-10-12T21:30:00.000-06:00

Awhile ago she "sametimed me" (instant message) at work. It had been awhile, because I usually turn the sametime off - people see me on there and want to talk, and I can't get work done. It had also been awhile because we don't talk that frequently.

Hi and how are things? And I told her about Ampyridine and how awesome it is. I asked about her kids. That seemed about it. We're all busy. Back to work.

When was it that she sent me the message? I don't remember. But it wzs right around the time when I was "standing up" and she was "falling down."

Yesterday - "did you hear about her?" Well, no, I mean, she sent me a message and we talked a bit.

One Thursday - after not a lot of concern grew quickly to great concern -she learned - 4 spots on 1 lung, 3 on the other, and it had gone to her brain. She had never smoked. The following Tuesday - successful brain surgery. Now chemo and radiation.

Today I went to PT. I worked hard on standing. I am standing up.

She is "falling down."

But if anyone can get back up, it's her.

Another lesson to cherish each day, love one another each day, and embrace life.

Peace.