The medical folks say that my rare disease has no cure, and
the most promising candidate for president has not yet promised to cure it. The
experts say there may be no more than 25,000 of us in the United States. We may
not be numerous, but we are dizzy enough to make a valuable voting bloc.
Multiple System Atrophy (MSA) is a homeless ailment that
settles itself in the brain like a TV cable company, deciding what its host
will see and not see. It gives its victim the diminished animation known as a
poker face, but adds a clumsiness that betrays a poker hand. It often wipes out
sweating, like an underarm spray that just kept going.
MSA usually appears when a person is in the 50’s. It takes
time to diagnose, so there may be some confusion about the precise starting
time. One study says that the median survival time after diagnosis is nine
years, but another records more than 20 years. If I had my way, both party
platforms would call for a higher minimum age.
MSA apparently strikes at random, like the referee at a
political debate. It is not contagious and it is not inherited from parents, no
matter how goofy they may seem. The doctors say it is progressive. It advances
fast in some cases, slowly in others. I am one of the lucky ones, having been
labeled slow poke by my mom. Since my diagnosis 14 years ago I’ve become a rollator navigator, learned how to unchoke, how to tumble, how to use the TV
captions on all of the shows because all of the performers have started to mumble.
The days slow down, and I enjoy them. The new math is hard
to figure, but 24 hours feels like 48, while I spend 24 hours doing what I used
to do in 12. I have less time for Facebook and making cards. I’m still here,
still in love with family and friends and the Eternal. No big deal. No sweat!
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