One of those diseases you never hear about | Vanburen

Believe it or not, an entire world exists which does not hinge on the November…

One of those diseases you never hear about | Vanburen

Believe it or not, an entire world exists which does not hinge on the November election outcome.

I can say that with some confidence by both ignoring 80 percent of the tide in my inbox and by a phone call with my sister last week. She’s puts together an annual benefit as a fund raiser for Hereditary Spastic Paraplegia (HSP) and wanted me to help.

She lives up in New York state and does this fund raiser every year, generally with a walkathon kind-of thing to benefit the national association, but this year the HSP fundraiser was going to be something virtual due to the pandemic and all and would I want to be one of the entertainers?

Her and I both agreed that I, being a big ol’ hambone, would have no problem not only participating, but entertaining, and of course I would. The event is taking place in February and you can fully expect some calendar mention of it somewhere in the paper as the day draws closer. But there you are: Something is happening and it’s planned for 2021, a year we fully expect to take place regardless of November’s outcome.

This is a good time to talk about HSP and why that becomes the charity of focus in this event.

I’m the oldest of eight kids, four boys and four girls. I was born in 1955. (This space reserved for age joke; on no, thank you.) Two of my sisters have passed, one five years ago, heart, in her sleep, and the other last year.

Of we eight, three of us have been unaffected by HSP. Nobody’s sure why, but things just sort of showed up when they showed up and here we are.

Let’s break HSP down: “Hereditary,” because it’s something in the genes. “Spastic” because muscles stop working right, becoming some combination of stiff and weak, and “Paraplegia” because, well, some of the muscles just stop working right.

Wait, one more: “Charity” because an awful lot about the disease is unknown. Smart people work in labs trying to sort it out (and others raise funds to help that cause), but the whole where/when showing up thing is kind of a mystery. (I expect one of those smart lab people would want to correct the above for a more detailed expression encompassing the nuance of their understanding. This is why you should not take the whole of health advice from newspaper columns.)

One of my brothers (I won’t be naming names) had “something wrong” from when he was very young. Coordination was a problem, and cognition become more so as he advanced in school. He’s as smart as any of us, but moving that thought through muscles affected by HSP is a problem.

Other family members affected had the HSP onset later in life. My one (other) brother reports he knew something was going wrong when he couldn’t run any more. His legs just wouldn’t work right. My one sister (see above) was through college, had a masters, when it started getting hard to get around.

Now at family events the three-wheeled scooters are part of the scenery as the disease’s creeping effect has left them mobility impaired.

(Which brings up an attendant point: If you are one of those people who park in the handicapped spot because “I’m only going to be a minute” you are a terrible person. Try, just once, just once in your life, loading somebody in a car who’s mobility limited while an SUV is clogging up the maneuvering room. Because let’s not kid ourselves, everything takes more than a minute. It will change your self-important opinion of yourself.)

I think about them a lot, my brothers and sisters, as I go about my affairs, going up and down steps, driving, walking, gesturing wildly with a coffee cup in my hand, and often have this sneaking other-thought as I recall them, that that thing I am doing at that moment, that moving around freely, I am doing for them.

And I will, musical instrument in hand, do it for them this February.

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