Thursday, January 17, 2008

Who cares what it is called?

I remember not knowing what was wrong with me, but knowing something was.

Not really in high school -- I was just a nerd -- but in college I remember things that just weren't right. I always tried to walk up and down stairs holding the bannister. One time, I was talking with a friend and I got caught in the middle of the stairs. I slipped and kind of grabbed him a little before righting myself. He just looked at me real briefly with surprise and a little annoyance.

There were plenty of other signs. At graduation we walked down the stairs of the Rotunda. I had friends make sure my steps were true. Unfortunately they were not there when I walked off the stage at the smaller graduation for my major: history. I slipped and only my fast-thinking brother-in-law who leaped up and offered me his arm kept me from tumbling. I hated the looks I got that day, assumptions that I was drunk. I even wrote a professor who looked particularly disturbed to assure her I was disabled not drunk.

I found out I had Friedreich's ataxia on the phone when I lived in North Carolina. That is my one complaint about my first genetic counselor. He told me I had a fatal disorder over the phone. Granted, I did call and ask for the test results. But that was only because we had heard nothing for so long.

At my next appointment with the genetic counselor, I spent some time talking to his intern who wanted to know how it felt to go from an unknown disorder to a known and fatal one. I told her that it went two ways: Now, we know what they need to cure to cure me, so yeah. But the test confirmed that I did not have a simple disorder that could be cured by taking Vitamin E, so boo. Also on the boo side: FA is a killer.

Of course, I told her I was still pretty ticked at God, known or unknown ataxia.

In the end, though it didn't matter, I told her. I still had to get up and go to work. It doesn't matter why my body fails, it just does. It still doesn't matter.


Anonymous said...

Dear Matt
What matters, actually, a great deal, is you.
I love you

Anonymous said...

You always matter. I also send my love.

Matt said...

Thanks, you'all. I am OK. I merely meant that doing was what mattered not what the disease is called. I may start living a life of sin because I hear hell is hot.

Anonymous said...

I am with you on the hot thing, besides, I'd miss all my siblings were I to go elsewhere. Happy B-Day to the wonderdog!

Anonymous said...

It's warm and cozy in heaven too!!


Anonymous said...

Are you sure about all your siblings?


Anonymous said...

yeah, pretty much all of us!

Anonymous said...

the cool ones at least....


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