I’m living a double life. I was talking with my daughter
when I noticed how intently I was trying to pay attention. My duplex head was
giving half of its focus to our conversation, while the other half was dealing
with MSA, the multiple system atrophy that short circuits my attempts to stand
more than briefly, or to walk more than a few yards with my rollator.
While one half of my apparatus is happily punching the
computer keys or reading a timely mystery novel, another half is occupied by
MSA spinoffs, literally a pain in the neck, some hammering on the inside of my
skull (who’s trying to get out?), a punch in the shoulder or the sudden
weakening of an arm, like a pricked balloon.
It is as though every 24-hour day comes in a 12-hour
capsule. Time is always short. Actions often leave no trace.
Why am I telling you this? Partly because I was born this
way, a journalist whose story-telling affliction is as old as the hieroglyphics.
Partly because the more people know about MSA, a rare and incurable disease,
the more likely is support for research. And partly as my excuse for being
slow. My chow hound fame was wiped out, like gravy with a napkin, and I’m now
the slowest eater at any table. I’m slow to answer letters and sometimes MSA
wipes out my memory of a letter that needs answering or a promise made. This is
a disease of falling and then getting up again.
Thanks for being one of the reasons to get back up.
--Notes in an OPCA/MSA Diary
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