Carpe Diem
A gentleman with SMA recently e-mailed me after discovering my blog. He included his website URL and, naturally, I checked it out. He's raising money to until a cure for SMA can be found. While I'm dubious about the scientific merits of cryonics, I admire his determination to keep death at bay. I think about my own mortality from time to time. At 34, I've probably lived longer than what is typically expected for someone with my degree of disability. The decision to put me on a ventilator at age thirteen is likely a major factor in why I'm still here. Without it, I probably would have been done in by something as seemingly trivial as a cold virus a long time ago.
Anything can happen, of course, but I hope to stick around for a good while. My heart is fine and I don't have any other major medical issues at the moment. The vent and the occasional course of antibiotics should be enough to help me fight colds and flus. And if I'm lucky, I'll live long to benefit from medical advances that might extend my life for a few more years or even decades. I don't expect to ever regain use of my atrophied muscles, but I'd really like to have one of those that researchers keep promising is just a few years away.
For all its hassles and occasional unpleasantness, life has been generally good to me and I still have plenty of things remaining on my long-term to-do list. If I was going to be born with a significant disability, it might as well be at this point in human history. Here's hoping I can make the best of it.
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