Sunday, October 31, 2010

Bonnie and aiming higher

After 4 years of not flying, I flew to our company's national diversity conference this week. There were many highlights, but perhaps the best was meeting Bonnie St. John, talking with her, and then seeing her give a remarkable presentation.

In meeting her, it felt like meeting someone with whom I had gone to college, and it is difficult to explain why that is because we went to different schools.

In talking with her, she gave me suggestions on how to approach some difficult things - but they were different approaches, perhaps because of her background and life story.

Then she gave her presentation where the theme was "Aim Higher." Aim higher? That's different. I think I've encountered, either by just me, from people I know, or strangers, the following approaches given disability:
1. Aim to do something.
2. Aim (?).
3. Aim, but be cautious and don't expect anything.
4. You may be aiming higher, but we think aiming is enough.
When I enconter something other than these, I'm shocked, so often I'm lost in questioning whether I should aim, aim higher, in what, how, and will I have support given #4. Perhaps I can aim higher.

Another part that hit me from her presentation was a comparison. On the right she put a "box" of disability. On the left she put a "box" of African-American + woman. And then she considered some different data. There's a chart with employer considerations regarding people with disabilities. Some include whether they are willing to hire a person with a disability, whether they think a person with a disability can do a job, and whether employers actually DO hire people with disabilities. When standing on the right, as a person with a disability, these are typical questions. But stand on the left. What if these questions were asked about African-American women - are employers willing to hire them, can they do the job, do employers actually hire them? If these questions WERE asked, and the answers were similar to the answers for people with disabilities, there would be a societal uproar. But with people with disabilities, the thought tendency is, well, it looks a bit better, let's keep watching it. NO! Let's aim higher!

Then there was this realization. Bonnie pointed out that people with disabilities do not tend to ask for help. Why is this the case? I've actually been wondering that lately - why do I always wait for people to ask me? I get it now. I do not ask because there is underlying fear that I will be perceived as weak or perhaps pitied, when I want to appear strong and invincible. I must be perceived that way. How else can I begin to aim higher? This won't change unless society changes perceptions, but I don't see that happening. Bonnie walked a block and a half on her prosthesis for a week at a training and tore up her skin. I do similar, though different things.

Bonnie received one bronze medal for an event requiring 2 runs. After the first run she was in first. But for the second round, the course was changed and everyone was falling. Bonnie fell at the end, losing first place and ending in third. The difference? Someone else got up faster. It's a bit like a race I did in high school where I wasn't supposed to win and was in first. I got beat in the end. Afterward my coach, Jean Ann, who ironically now has ALS (which she says sucks) while I have MS (which I say sucks, though not as badly), told me "you could have won that race, you know?" Yes, I knew. I didn't have to get up faster, but I lost it right in the end because in a split second I doubted myself. That made the difference.

So we, and I, were moved. I laughed hard, cried a bit, was enlightened, had some concerns confirmed.

The rest of the conference was good. But this brought me to a new place.

And so I move forward with the belief I can aim higher.


Sunday, October 24, 2010

... Pause ...

"Let us pray." And THAT is what I needed, right before being assisting minister at church today. That kind of Pause, to collect thoughts, to be "in the moment," distractions removed. I don't think I've been a part of that pre-service prayer in other times. ... Pause ...

The moment ... we joined hands ... we prayed ... I closed my eyes ... holding hands ... not losing balance (new) ... in that moment ... closing eyes, holding hands, holding steady ... God in that place ... Pause ...

It's aside from all this that life is chaotic. Recently, frustration - people do not understand - having a certificate, something official - it doesn't qualify someone to decide what is best for people who have disabilities. But clearly, many people think they are qualified to make decisions for us - which would be fine - if they asked us - especially when we repeatedly offer to give guidance. And it seems that most places I turn, there it is. There's a flyer with a guy going off a diving board, launching himself from a hospital wheelchair, doing a cannon ball. Clearly this wasn't shown to many people because launching off a diving board would be almost impossible; the guy has leg muscles (in people with wheelchairs, generally muscles have attrified); his legs are raised to do the happy cannon ball rather than down; and most people who are independent enough to launch off a diving board will have their own, "cool" wheelchair. This is just one example.

But I see the effort is there. The effort is usually there. The intent is almost always great. And you can tell which things have had input from those with disabilities and those without.

But back to Pausing...

Out on my deck this afternoon, the leaves have or are turning. They are beautiful. It's a gorgeous scene. My daughter is in the front raking leaves with the neighbor kids and throwing them in the air - laughing, smiling, no cares in the world.

... Pause ...

... Tears ...

This was not how things were supposed to be, I think. I'm not sure exactly what I mean. It's something with life. Bad day - insomnia, nausea --> not eating --> migraine.

But this is short-lived. Tomorrow I get to present with someone who is a minority in a different way than me, but she is part of the group with whom so many people with disabilities can relate. And we will discuss, and laugh, and get away to do a presentation.

And although today I have realized frustrations, I have also, finally, taken time to Pause, hand it to God.

... Pause ...


Friday, October 22, 2010

Vacationing with MS and the new medicine

See previous entry for the Mt. Rushmore moment. That was the highlight of the trip.

We're just back from vacation... Mt. Rushmore area...

Vacation with MS, or I suppose for most people with disabilities, is this mixed bag of stuff. I go somewhere fun or beautiful (or both) and love it, but at the same time have to figure out the logistics of everything - every bathroom, every walk, every interaction, every place, everyone. It's tiring and can get annoying - with Ampyra, things seemed easier. I didn't fall. Of course everyone is figuring out this stuff, but I'm going to bet people with disabilities have a bit more work. I mean, do most people, when entering a bathroom, hope there isn't a huge toilet paper dispenser right above the bar that could cause them to fall, and when it does happen, have to figure out how to avoid falling?

I know no one but my family on vacations, just like everyone else on vacaion, and people can act differently around me depending on who they are and what their background (combo of being around others with disabilities and the society in which they live) is.

With Ampyra, things changed a bit this time. We used to have to stop for me to walk briefly to prevent leg cramps. Now we have to stop more frequently and I walk much further each time. I plan how far I'll go, then start, and then decide to double or triple it. And I'm bent, but I'm working on being straighter, even when completely hunched. This trip I found myself, rather than going on short walks out and back to the car, actually walking into restaurants, gas stations, our hotel. Once my husband nicely (so he thought) parked the car closer to a hotel entrance and I informed him that no, park it further, darn it! :) And we have to take walker and wheelchair everywhere so I can walk and wheel. When I chose to walk this time, I made it - some pretty far distances. I use strategies, so there's another difference. Who else thinks as they head to their car "Break it up - make it to that line, then the next line, then the next. I WILL make it. Bring hips forward. Long steps. Kick it. Don't lean." This is all going constantly through my head. It's part of why I can get mentally exhausted.

Rest stops - can I make it in with the walker? Rephrase: I'll make it both ways using the walker - it just may take awhile. People may ask if I need help. With the walker, people seem to have a more "sympathetic" tone - with the wheelchair, it seems the tone for some reason puts me more with everyone else. It's just odd.

Hotel rooms - always interesting. At home I have my way of doing everything and it has a kind of rhythm to it. Toss that out when staying somewhere else. How's the bathroom set up? Where are the bars? Where is the shower and how is it set up? Best place for towels? Wheelchair or walker? Beds - how high - if too high, must use the walker. If too low must use the wheelchair. Is the room long enough to do some walking? Can I use something to do exercises?

Therapy - where and when? Can I find a bar where I can practice standing? Bet I looked silly doing my balance exercises in my chair at numerous tourist sites. I probably looked like I was doing a praise God ritual, along with some kind of Yoga. What IS that lady doing?!! Why doesn'r she sit back in her chair?

So, thoughts while traveling. Next week I take a plane. I hate to fly - I think it's the lack of control. And then I'll have a new hotel and a whole new set of circumstances.

After that, I think I'll be happy to be home for awhile.


Monday, October 18, 2010

Silent miracles

My husband says (at Mt. Rushmore)
"look at the eyes of the different presidents...
with the binoculars."

I look at them (the binoculars) strangely.
They're just sitting in my lap.
Why am I hesitating?
I pick them up and start to look.

They're not quite steady, but something is different.
What is it?
I try to steady them.

I realize suddenly that I'm using both hands to hold these things,
when I used to use one, which wasn't effective.
I used the other one on my chair for balance.
And then I gave up.

But now, I can see those eyes of the presidents.
I can hold the binoculars steadier.

Then I realize I am doing the same thing with my camera.
I am using both hands, without thought.

And so I take the binoculars again and refocus.
It's new, seeing these eyes.
I can see them, with more clarity.

And no one knows I'm having this profound experience,
which may seem trivial to some,
but is this remarkable blessing to me.

And so, maybe it's more profound
to be truly alone in this (these) moment(s)

when God is right there with me
holding me in a different sense
and showing me the truly remarkable simple actions

that at other moments in time
I took completely for granted.


Thursday, October 14, 2010

October 14

"Looks like you must have had a virus, but everything looks ok, so it must have gone away."

The 4 MRIs of my brain were all normal.

Maybe it's in my head. But HOW can this be in my head?

I run, I lean, I start to fall.

Today - October 14 - the day my college running coach made a tape of me running, with the normal start to it, then me starting to lean.

Look docs - look what happens - she starts to bend over.

"Beth, you need to be prepared for not running competitively again."
What?!! But he was right - my college doc - the only one who had it right from the start... the only one who told me what was happening, because he knew.

"It can't be MS - no brain lesions, other symptoms are normal."

Tests, tests, tests.

And I remember October 14 - I think then I sensed it wasn't in my head.

So for fun, because it's about right, let's designate the cat's birthday as October 14, so we can smile. We can laugh until our stomachs hurt and we can't stop laughing.

Decorate the house. Bake a cake. Give special tuna to the cat.

In silence, pause to remember this day. "Benson Bowl." Kenyon College. 1992. 3 long years to diagnosis. Tough years, far from home, but filled with support. That's Kenyon.

Being held. Child of God.


Tuesday, October 12, 2010

Standing up, falling down

Awhile ago she "sametimed me" (instant message) at work. It had been awhile, because I usually turn the sametime off - people see me on there and want to talk, and I can't get work done. It had also been awhile because we don't talk that frequently.

Hi and how are things? And I told her about Ampyridine and how awesome it is. I asked about her kids. That seemed about it. We're all busy. Back to work.

When was it that she sent me the message? I don't remember. But it wzs right around the time when I was "standing up" and she was "falling down."

Yesterday - "did you hear about her?" Well, no, I mean, she sent me a message and we talked a bit.

One Thursday - after not a lot of concern grew quickly to great concern -she learned - 4 spots on 1 lung, 3 on the other, and it had gone to her brain. She had never smoked. The following Tuesday - successful brain surgery. Now chemo and radiation.

Today I went to PT. I worked hard on standing. I am standing up.

She is "falling down."

But if anyone can get back up, it's her.

Another lesson to cherish each day, love one another each day, and embrace life.


Monday, October 4, 2010

Hanging in mid-air

With the new medicine, I talked to someone and decided to go to physical therapy that specializes in neuro stuff. Last time I went for evaluation. Today I went and got worn out - it's s good thing.

There's a treadmill and then I'm put in a harness, attached to a contraption, and then lifted via the contraption. Then I attempt to walk, with the contraption holding me vertical. It's very strange. Then when I can't really do it, some therapy bands (think big rubber bands) are strung though the contraption and around my feet, or various legs muscles. The PT moves my right leg and I move my left, but I can't get the rhythm quite right so she tells me when to move the legs.

Then we work on standing in this contraption, so I am standing vertically. Then she tells me to tell her when I'm tired. Ha! Already tired. Pushing on.

Then I'm lowered off this thing and go to the therapy table, although for the next hour I feel a bit like I am floating. On the therapy table, we practice a lot of sitting stuff, again working on being vertical. Then there are legs exercises.

I feel like I've done a marathon but I've only been there an hour.

And then I go to the "real world," where there is too much to do with too little time.

But tomorrow a part of all this will come to an end. We will have our disability awareness dinner during this, the national disability employment month. I'll see old friends, meet new friends, and hope we got all the never-ending details right.

Then I'll start again Wednesday and revisit all the therapy ahead of me. Life is exciting and exhausting at the same time. Insomnia and nausea with Ampyra are no fun, but I keep going, going, going.

It's an exciting journey.

We used to run a route we called "Death Quest" (now a skateboard park) in training for cross-country. 3 minutes hard, 2 minutes rest - around a triangle where we climbed a hill, ran across a flat, up a bit more, then back down and around. At the flat part, our coach would stand and yell "MAINTAIN!!!" So now I'm maintaining. One more bump and then I get to glide down the hill.

I think I like this new version of "Death Quest." I do like this journey. I pause a bit to gather thoughts and connect with God.

And in the end, there is,