Wednesday, October 21, 2009

My career as Thumb Wrestler -- down the tubes

Turns out that people with Friedreich's ataxia have a perfect excuse for losing at Thumb Wrestling.

Of course, we have an iron-clad excuse for not dominating any sport, but I just learned the Thumb Wrestling one today at the Muscular Dystrophy Association's FA clinic.

You and an opponent assume the Thumb War stance and the opponent starts pulling back but keeping his grip. You will find your thumb getting lower and lower. It is pretty odd.

It was my first time at the clinic, so I had to do the same battery of tests I have done for years. The thumb one was the only new one.

I'll get back to the tests in a minute, but one of the reasons I went was to get some advice on my AFOs, or ankle braces. Now I wonder: How do I tell the folks who made them that the guy at the clinic (albeit from a rival orthotics company) said they totally suck, are made wrong and no wonder they hurt? He made a persuasive case to me and Mom, but I mean what do I do now? He said the company I used is not great, and if what he said is true, I have no confidence in the company. I mean they did not seem so great to me anyway, and it pisses me off my rehab doc recommended them. But I know they won't give me my money back to get AFOs elsewhere.

Anyway, back to the tests: Doctors have me touch my nose and then their finger. They hold my head and have me follow their fingers with my eyes. They drag sharp objects on the bottom of my foot. The poke me with pins. They test sensation on my hands and feet, They try to get reflexes and pull my arms and legs to test my strength.

I tell jokes ("Only one doctor ever got reflexes"), offer information ("my feet are really bad") or make small talk ("that's a new one" in reference to the thumb test. The doctor told me it was an old one, just one of several ways to test whatever). When I am with doctors, I am on. I need to shine. They -- and it is always a they with me, doctors always bring their students to see me -- need to walk away thinking: "That does it, I am changing my specialty to neurology and will not rest until we cure this accursed FA." If they are cute female med students, they are also welcome to marry me.

After the appointment, where I also learn that the latest potential treatment is not turning out well and the doctors mostly ignore the anecdotal evidence that my elimination issues are related to sitting in a goddamn wheelchair all day, it hits me. I have failed these tests ... again.

Mom says it is not a test like that, there are no F's. She is right, of course; I know this in my head.

In every other part of me -- heart, soul, etc. -- I have proven to be disabled. And I still need to tell off the AFO company.


Anonymous said...

when do we start writing our letter?

I love you so much. All the parts of you. All the parts you don't love. I love them even though it hurts and it hard. I love them selfishly because of what you (and T and S) have given to my children. You (and T and S) have given them the knowledge that different is good. That different doesn't not mean incapable. That different means funny, strong, intelligent, loving, a cream puff :) a friend. selfishly, thank you. Maybe J can use his computer knowledge to kick this things ass or maybe K will be the smart one in the family and become a scientist who fixes this crap once and for all.

Anonymous said...

Or maybe they will just be generous with every person they ever meet. Unless, of course, that person is a jerk. -- Ellen

Matt Trott said...

If they can tell the jerks, I will be happy.

Anonymous said...

I am ready to start writing the letter. Or even better, call them and talk to them over the phone. Seriously, don't let them off the hook otherwise they won't learn. I think they should know that your insurance has now covered something that is useless and now you know that there might be something that might work but that you would have to pay for it out of your pocket so what WILL they do about it? It is obvious that riding your bike is critical to your mental and physical health and the orthotic devices have just added more unnecessary frustration to your already difficult situation. Sounds like we started the letter........

Thank you for your lovely thoughts Emily.

Matt Trott said...

Sadly, they didn't help at all with trike. But just sitting with them felt better.

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