This Republican rocks

In October of my third year in college, Mom, my brother and I headed down to Emory University in Atlanta for a bunch of medical tests. Emory had a mitochondria lab, and doctors thought maybe my brother and I had something screwy with our mitochondria.

There was no test for Friedreich's ataxia, and doctors had no clue. They would see me and say: Oh, you clearly have FA. Then they would see my brother and said: Cleary, he doesn't, so you don't either because brothers would not have different ataxias.

Turns out they were right and wrong. Yes, we brother don't have different ataxias but no, my brother really did have FA, apparently just not a text-book case like mine (I so rock).

But that was years later, back to Emory.

The feature test was a muscle biopsy. My only complaint now after 16 years is the same as the one I had back then: They did it too neat so it is hard to see. The other tests included a lumbar puncture, blood work (passed out for that) and 24-hour urine collection. I know one of Mom's memories is walking to our motel near the hospital with these two empty jugs in her hands.

The doctors learned nothing from these tests, and our insurance company decided these tests were not diagnostic but exploratory. And they would not pay. Jerks.

After going back and forth with them, Mom called her congressman to try to get some help. Frank Wolf assigned a staffer to look into it as I recall, and the issue was settled. I don't know if Frank did anything, but I never forgot it. Perhaps, that is why I emailed him after the hellacious para-transit trip.

I like to think I am in a détente with the para-transit company. I had a very unsatisfactory complaint call about that trip, but then my brother, who now works with disability issues, gave me the email of an exec at the company. She seemed to shake some heads, so things have been better lately, not perfect, but better.

Yesterday I got a call about the hellacious trip again. This time, the woman was quite apologetic. I found out why when I got my mail.

I had a letter from Congressman Wolf, who said he asked for a status report on the situation from the company. Maybe I should ask him to find out why God allowed this disease to strike me. Fighting Frank might get an answer.