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)