In 1988 the Universe saw fit to gift me with an incurable disease that was supposed to do away with me by some time in the 90’s. It was an interesting and remarkably painful condition, the full name for it is Diffuse Progressive Systemic Sclerosis (aka Scleroderma). The disease essentially turns a body — inside and out — into leather so, inside, the organs don’t function as well as they might right up until they cease to function at all, while outside, the skin turns to leather too, tightening up significantly enough in my case to have resulted in my finger-tips almost resting on the palms of my hands… permanently.
There were, though, two upsides to this condition. The first was profound: it changed me as a human being as well as changing how I related to the rest of humanity because — trust me on this — when you go out into the world looking like a creature that has been made up in a movie studio to star in some grisly film that has been designed to terrify people, you have to figure out some way to be more relatable. I was, when scleroderma claimed me for its own, quite literally scaring children and it was painfully easy to see that their parents were being embarrassed by their children’s behavior as it was obvious to them that I was just terribly disfigured.
In an attempt to at least mollify these disturbing scenarios, I determined to costume myself. I wore bright colors and gloves — with the fingers cut off — that I’d painted with designs in bright colors, just the sort of thing that anyone might well be tempted to stare at with good cause. That way, I figured, the parents could be less embarrassed because “I” wasn’t the object of their children’s shock and awe… it was just my bright colors and my gloves. That had the interesting side-effect of parents sometimes opening brief conversations with me about my condition. Previously somewhat shy of total strangers attempting to chat, I was happy to share.
I’d never been much of a people-person before; certainly not with total strangers but I changed. I thought I was changing for them but it changed me and I liked it.
The second unexpected upside was about as far from profound as you can get: I stopped having to shave my underarms, my arms, and my legs… because there was no longer hair on any of those places. It couldn’t grow through what my skin had turned into. And, heaven knows, what with my Cuban genes, I’d had some hairy appendages. So, yay!
I remained both more sociable and less hairy right into the 2020’s. I still remain more sociable when out in public, though on my own I tend to choose solitude more often than not. That’s just my nature. I refer to myself as a hermit with friends.
A chance visit with an acupuncturist a couple of years ago led to her asking about possibly working with my hands which are the only visible vestige of scleroderma left to me. I’d tried acupuncture for my fingers before, with four different practitioners. None of them had produced any results at all aside from, on a couple of occasions, more pain than I could have dreamed possible which, under the circumstances, was saying something. But there was an aura about this person that inspired my trust… so I agreed that we’d try. I have been seeing her monthly for about two years now. Not much changed for the first year aside from some pretty horrifying nightmares that would follow later in the night… vestiges of childhood abuse. But a few months ago, my knuckles began to loosen — and pop — just a little… then, a few weeks ago, purely by accident, as I happened to catch sight of my arm backlit by the sun, I saw hair! I sat down and pulled my leg up into the light and, sure enough… there was hair there too! It was… is… super-fine and blonde… LOL — or maybe it’s grey! But now, more than 30 years after it ceased growing, the hair on my arms and legs is growing again! I don’t quite get why I’m so happy that I may have to start shaving again but, hey, all that matters is life is good and I have a strange little thing to be happy about.