Monday, December 26, 2011

The pink sweater

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.


Friday, December 23, 2011

A Christmas Pause

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.


Tuesday, December 20, 2011


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.


Tuesday, December 6, 2011

Receive, find, open, and hope...

"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.


Tuesday, November 22, 2011

Ever in my heart

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.


Friday, November 11, 2011

Blowing the whistle

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.


Tuesday, November 8, 2011

When it rains, it pours

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...


Sunday, October 30, 2011

Food for Thought

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.


Monday, October 24, 2011

Will you ever?

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.


Sunday, October 16, 2011


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.


Wednesday, October 12, 2011

To sleep, by chance to dream

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...


Sunday, October 9, 2011

Who we are

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.


Saturday, October 8, 2011

The Rules

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?


Monday, October 3, 2011

A river runs through it

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)


Saturday, September 17, 2011


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.


Sunday, September 11, 2011

Remembering 10 years ago

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


Monday, September 5, 2011

Giving it to God

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.

Sunday, August 28, 2011


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.


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.


Sunday, August 21, 2011

Beginning the end

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.


Saturday, August 20, 2011

You're IT!

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.

Tuesday, August 16, 2011

Joining the Movement

"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,


Wednesday, August 10, 2011


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.


Saturday, August 6, 2011

The Times of our Lives


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.

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.

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.

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.

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.

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.


Monday, August 1, 2011


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.


Saturday, July 16, 2011


"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.


Sunday, July 10, 2011

Remembering Aunt Dot

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.)


Friday, July 8, 2011

A Difference of Opinions

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!


Saturday, July 2, 2011


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.


Monday, June 27, 2011

Will you?

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.


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...


Saturday, June 25, 2011

Why church?

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.


Friday, June 17, 2011

Sit there.

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...


Saturday, June 11, 2011

Reflections on a year

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.