Wednesday, April 24, 2013

One week

It has just over one week since lives were changed forever at the Boston Marathon. Lives forever changed in so many ways:
   1) Lives lost.
   2) Lives with new disabilities inserted, though nothing was done wrong by those who now have the disabilities. Isn't that often the case? Disability enters life without warning, through no fault of the person who “receives” disability?
   3) Unmet dreams... those who didn’t finish due to the chaos.

Perhaps those who did not finish will return. But perhaps this was their shot at their dream. Perhaps they are left feeling as though they were so close to their dream, but they will never get it.

As I went through last week, though my life is not at all the same, memories came flooding back. Memories took me to the morning I awoke to legs feeling as though they had pins and needles all over them. Disability entered without warning, through no fault of mine. At that time, I thought I had slept wrong. Unmet dream of never running under 19 minutes, yet coming so close. So close, not ready for disability.

Sadness. Anger. Not at those who did this at Boston. Rather, sadness at disability robbing ability.

On Thursday, anger out of nowhere… why anger? Anger at those unmet dreams. I wasn’t done running yet. Ability taken from me too soon, not my fault. I wanted to tell everyone to just leave me alone, go away, I didn't want to talk.

People continue, move on, pursue new dreams, show disability isn’t an end. Then, out of nowhere, events bring back memories and tears.

To me, I wanted some people to disappear and let me be in my own space. Boston was not some "wow, let's hear what's happening now" random series of events. I personally don't care who did it. And it's a bad time to discuss guns and immigration. Time to turn off the news which now focuses on who. To me, now is about supporting those whose lives have been forever changed, and continuing to support them for perhaps their entire lives.

Give people space; you don't know who is needing it for whatever reason. Ask how people are and continue to ask, because disability can be forever.

Never forget. Disability. Boston. Connecticut. Aurora. Virginia. Columbine. Moments of pause.

And also, begin to heal, in whatever way that means.


Thursday, April 11, 2013

Whoooooo _are_ you?

"Whoooo _are_ you?"

That's an owl, as I sat at a bridge close to our house, the resting place for walks I do from home.  The owl seemed to be talking from the west, and he (or she) is always there, with his familiar sounds, asking who I am - it's always the same.  As I sat there, I thought, I don't know who I am.  Who am I?  I thought I was a runner and an athlete.  I think I'll always be an athlete.  I think that pretty well defines me.  I got a lot worse with MS, and then I have spent the past almost 3 years improving. 

Who am I?  I used to be somewhat of a disability spokesperson, but then I wanted to be in healthcare policy.  I found my way there, and strangely, I no longer want to be the disability spokesperson.  So then, who am I?  I am Beth, simply Beth, and Beth is in her heart an athlete who loves to be outside, and who loves this new walking and equates some workouts with those of when I ran competitively.  Beth never left. 

So owl, I am Beth.  And I had tears then because this is all so strange.  Also, I was worried about being able to get Ampyra with new insurance, and it made me question myself, because I don't ever want to go backward again.  I sat there and contemplated what, of all the trouble in getting Ampyra, was causing me to somewhat question my abilities, and to question why I was upset in a way that was different than just being able to get Ampyra.  There was something more there, but what?

Then I left my resting spot by the bridge to go home.  Had the owl moved?  I was traveling east to get home.  But the owl now seemed to have moved from the west, where I heard him on the bridge, to the east, continuing to ask "Who are you?" and I, irritated, thought, "Where are you and why do you keep questioning me?" right back at the owl.  Then I heard a crow, squawking once, telling me "Go!"  and as I reached a struggling point for me, on the uphill, almost home.  And then a few small birds seemed to urgently whisper, "GO, Go, go."  And then I was home.  Going on walks for me brings with it all the sounds of nature, speaking to me through my imagination.

The next day I was on another walk.  On that day, we had heard the part of the Bible where Thomas needs to see to believe.  So we must believe.  We must believe and yet we cannot see.  Strangely, I translated this into the notion that I must believe in myself.  So this walk wasw on a bike path.  There are 2 ways to turn at the beginning of the path, and each leads to a bench, but I have never walked to the further bench (one way there is a closer bench; the other way there is a bench, but it is further).  But if I was to believe in myself, I needed to go toward that further bench.  So I went.  By the time I reached it, I must have looked really stellar, because 2 people asked me if I needed help.  Guess I didn't look stellar.

I sat on that bench and saw long brown grass swaying in the wind.  There was a stream in front of me as well.  This stream, I noticed, didn't hesitate.  It was small, and moved slowly, but there was nothing in its way.  Tears again.  I think what has bothered me is the inability for certain people to believe in the possible power of Ampyra.  It doesn't work for most people.  So others question its ability to be helping me function this well.  And that questioning is upsetting.  I am not imagining this.  It is reality.

I headed back to my car, thinking I just needed to believe in myself and ignore the doubters, the people who needed to see a bunch of data to believe (ironically, I normally need to see a bunch of data to believe).  Pretty soon, much sooner than expected, I was almost to my car.

Along the way back, there were images and voices from the past - my imagination at work again.  "Beth, you could have won that race, you know that, right?" (Coach Jean Ann) "Beth, here's how you do YBF.  You're almost to the top of the (huge) hill, and you need to think to take 3 steps and then you are done.  1, 2, 3, done!" (the last small hill - Kelley)  "Maintain!  Maintain!!" (through the flat stretch - Coach Martin)  "I got her, the girl from Poudre.  She cut me off.  I'm going to cut her off right here and then just go hard to the end.  See I can push people off the path, too." (and later, between Coach Gomez and I, who pushed who?)  "Someone has to win!!!" (Coach Luckasen)

And I was done, at my car.  I believed in myself.  I think that was a half mile, and I hadn't felt like doing anything that day.  Those are the days of the best workouts - when beforehand, I just don't feel like working out.

Nature urges me on. Voices from the past tell me to win something.  The Bible tells me to believe, and I guess I'm using that, too.  I don't think God minds.

"I think 2 choices in this type of situation. You either give in or you fight it. I intend to fight." Annette Funicello

Thank you, Annette. Your spirit of persistence is right there, too.