So, I’m flying to Cincinnati in a few hours, like, seven hours from right now. Their going to re-measure my trach because it’s still not right, but that’s not even the main reason I’m going. They asked me to come back because the doctors at Cincinnati Children’s Hospital had never seen anyone with SMA Type 1 at the age of thirty, they didn’t even believe the diagnosis. I couldn’t have SMA Type 1, it had to be Type 2, or 3, or maybe something else altogether. People with SMA Type 1, they don’t go twenty-seven years without being trached, if they see twenty-seven at all. Well, even though I don’t fit the diagnosis, at all, fancy genetic tests proved that I definitely have SMA Type 1. Maybe I’m some sort of SMA Missing Link, I don’t know. They’re going to run a bunch of tests and study me.
I just feel really weird, for lots of reasons I’m more uneasy than the last time I went to Cincinnati. I’m thirty, I shouldn’t be, but I am. I don’t know, I can’t articulate it just now, but I feel like such a failure.7 comments