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.

8 comments:

Anonymous said...

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

Anonymous said...

Matt
You always matter. I also send my love.
EMT

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!
mtc

Anonymous said...

It's warm and cozy in heaven too!!

GPT

Anonymous said...

Are you sure about all your siblings?

B

Anonymous said...

yeah, pretty much all of us!
jtg

Anonymous said...

the cool ones at least....

ejd

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