Saturday, February 25, 2012

At odds

Somewhat having writer's block on how to write on observations...

At our church, for Lent the theme is At Odds with... (I guess you could fill in the blank). If I think about it, the church is at odds with society, at this time, with the whole concept of waking up on Sunday mornings, going to church, Sunday school, etc. That's not the "normal" much in society. The church is at odds with society in having ashes in the form of a cross, for Ash Wednesday - again, not the "normal" for society. Also at odds with having Wednesday soup suppers and then services afterward.

Many people give up things for Lent. I don't know that I have ever done that. I have added reflection time (which I suppose does mean I gave up something else to do so). This Lent I suppose I'm a bit "at odds" with myself in terms of thinking of what I can do. I've been trying to notice things lately, with the sense that in the economic times where we find ourselves, things are different than they used to be.

What I observe is that last year, I noticed a term called the "new normal." Late last year, there was a story somewhere on words that are overused and that was there. Another similar term is the "new reality." These terms seem, to me, to be used whenever there is a context of a financial struggle.

But what perplexes me is the word "new" as part of "normal" and "reality." To me, the struggles may seem new, but they really aren't new. Maybe they have surfaced and seem new to some, but they were coming and I think I saw them awhile ago. Maybe where I live is behind in terms of being hit financially, but I'm not sure that's it. So this "new normal" and "new reality" bothers me. Maybe I saw them in a segment of the population - did it hit people with disabilities first and that's why this doesn't seem new to me? Or maybe it's because I live in the disability world and just noticed it, but it's been going on everywhere and there are now terms for it. But it seems that wherever I turn these days, there's the sense that this is new.

So going back to Lent, I think I want to try to find a way to be at odds with this "new" perception. It's not to say that I don't see that it exists everywhere I turn. It's depressing really - I know people, more than just 1, who are close to being homeless and I would never have guessed that would happen to them. There's the feeling that no one is immune from all of this - the sense that no one knows what tomorrow will bring, and it's in a negative sense.

So this "new" perception, I've noticed, does not bring out the best in people. People try to help others; people try to be nice. But there's also a sense of urgency everywhere - and so then it seems to turn people somewhat and there's a "snap" effect and a sense of frustration.

To be at odds with the "new" perception, I suppose I have to figure out ways myself not to "snap," not to be frustrated, not to dwell on the "new" everywhere I turn. I can't say I can make a total turn and become happy about everything, because that's not reality.

I suppose what I can do is try to help those who are frustrated and to listen, knowing that I probably can't help solve their frustrations, but I can listen. I did that twice this past week - and for the few people who read this, know me, and may think they know who I listened to, I'd say it's probably not who you are thinking and you probably don't know them.

So Lent, at odds with society - I think for me it's going to a reflective time of thinking how, even though I will continue to have frustrations, I can open myself to not dwell exclusively on frustrations. And it's going to be a reflective time on how I can best listen, because if I look at this past week, there are people who just need someone to listen. They may need to actually cry. I'm not a counselor and can't solve their frustrations. I'm not sure why a few people have been asking me to listen. But I can listen, just as people have listened to me. That is, apparently, just what some people want - they said "thanks for the ear."

Lent - at odds - looking for a light in the midst of what seems a time of darkness, and being open to listening to those who are struggling, even as I may struggle.


Saturday, February 18, 2012


When I was diagnosed with MS, I was just starting to run again (because MS is such and up and down disease). So I ran a ton, but I also biked. I went home that summer and bought a new bike, and would ride the bike all over central Ohio, especially the summer between my junior and senior years - run in the morning, bike at night. Kenyon College is in a beautiful area, and in any direction there was a beautiful ride waiting for me.

Many years later I got a handcycle, so I have used that for a few years although I hurt my shoulder and have had to cut back on that.

Before shoulder surgery, I got a recumbant bike "thing" for at home. It's a small machine with pedals and it has a motor. I can turn it on and then there's an adjustable knob that makes the pedals move, slower or faster. It got hidden while I finished my Masters. But I took it out a few weeks ago and set it up in our living room so our house looks even more like a rehab center than a house. There's the bike, the therapy bands hooked to the banister, the standing frame (I sit on a seat and crank it up until I am standing straight and it holds me in place), the big therapy ball, ... When Lori's friends are here, we have the coolest house with so many cool toys!

A therapist had set up the pedals on this bike so my feet don't slide out. So I've been biking! Feet go in pedals, motor turned up, go! Then I pretend that really I am moving the pedals, and I am doing some work. But when the timer runs out and the motor stops, I realize I'm not doing a lot of the work. But I do enjoy biking again. It's not beautiful, central Ohio, but it's something.

We just got our daughter a new bike for her birthday and will give it to her on Monday. Then she and I can bike together this summer. I'll use my handcyle. But one just never knows - maybe someday I'll ride a "real" bike again.

Never give up on dreams.


Saturday, February 11, 2012

A tribute to Dr. Schermer

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 ( 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.


Wednesday, February 8, 2012

This day

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.


Saturday, February 4, 2012

The Elephant in the Room

"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.


Friday, February 3, 2012

I wonder as I wander

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. 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.