A Character Trait Earned from Chronic Conditions: Endurance
Though I wish I’d had other options, it does help to recognize how years of treatment changed me.
I hate needles.
I’m sure it comes as a result of injections — meant as treatment for a neurological vocal disorder — that in my late teens muted my voice for a month a time. But they have become a necessary evil for maintaining the rest of my body.
I have a neurological condition called dystonia, the third most-common movement disorder. It does not affect my mind — except for an ever-deepening distain for needles — but does lead to uncontrolled muscle spasms that twist my limbs against my will, shake my voice, and spring tremors into my arms, leg, and neck. Some people with severe dystonia can become bent into such severe postures they can hardly move. Mine results in more of a gentle limp, a trip of annoying symptoms across my body. Up until a few years ago, it was mild enough it never occurred to me to describe myself as having a disability.
Medication helps a little. Relaxation techniques reportedly help other people. Caffeine, lack of sleep, too much attention paid to my body’s irregularities (much like for people with a stutter) all make it worse.
The best option I have is Botox (botulinum toxin) injections into the overactive nerves that bind up my muscles. Picture someone jabbing a long, sharp needle into the worst muscle spasm you’ve ever had and feeding your angry nerves with a little dose of poison. It can be momentarily awful, but offer a few months’ benefit. The nerves wither, stop their petulant pulsing over those months, until they recuperate and again begin their misfire.
Once I accept we’ve figured out the best pattern of injections, the neurological agitation finds a new part of my body to rack. Lately, my arm has developed a chicken-wing tremor while I drive — and with it, a new nerve in my armpit to inject. Sometimes I feel like we’re trying to tether down a storm with needles, but the clouds just withdraw to reform elsewhere.
A few months ago, my favorite physician decided to take time off. Like everyone I know, she needed a break after a slog through the pandemic. I was sure I’d be lost…