Wednesday, January 29, 2014

It only hurts when I list

Why not? I’ve been asked to do goofier things than list some of the little things a person with multiple system atrophy (MSA) may deal with during a day. These are not the spectacular things, such as falling over in the kitchen and leaving the eggs to keep frying solo.
These are little things that people seldom talk about outside their support groups.

There’s the pain in the back of the neck that pops up when you turn your head, or lift something, or for no apparent reason.

Then there is the frustration trimming fingernails when the thumb’s too weak to click the nail trimmer.

Or dropping a glass of iced tea you thought you were holding securely.

How about the vocal cords acting up during a conversation, like a violin squeaking?

Or choking and gagging that feels a lot like waterboarding, triggered by a drop of moisture or a breath of fresh air.

Maybe speaking to the person whose shadow just moved up beside you and getting no answer because you’re all alone.

Starting to gasp like an old steam locomotive spinning its wheels, then stopping whoever’s starting to call 911.

Walking off the edge of the sidewalk because straight lines are tricky.

Squinting at the TV screen because your headache du jour is distracting, like a wriggle of electric current across your eyebrows.

Little things can annoy, especially if they are mosquitoes or gnats, but they are less annoying than big things, like angry elephants or rolling out of bed and breaking the other hip.

The best thing I can say about this is that nobody actually likes MSA and its incurable misdemeanors, but among the scores of victims I’ve known via the Internet, there are doers, planners and givers, but no whiners. The confidence that medical science will find a cure for this and other diseases is virtually unanimous. Maybe it will be soon, maybe not. Meanwhile, some support research, some pray, some write lists.








1 comment:

Patient-Online said...

Hi Ed, I appreciated this article so much. That you are a professional writer is very evident in your style and wit. Also, as a fellow patient with MSA, I am touched by the awareness you have and I feel as though you are describing my existence, in a sense. Keep it up and thank you! -- Dan