Guest Post: Self-Care and Cerebral Palsy by Joanna Paul

When I was a child, having such mild cerebral palsy meant being “highly encouraged” to not palsy it up, to ignore the spastic, to “put your arm down, weight shift to your right leg aways, don’t  toe walk, stop curling your left fingers, don’t sit in the W position, straighten your left wrist.”
“Conform. Be like everyone else. You can overcome these movement problems with therapy and practice and bracing wraps. If you don’t exercise those muscles they will atrophy. Nobody needs to see you curling your wrist and arm. Wear these insoles, these special ones that hurt your feet. It will keep you from limping.
TLDR: Hide the visible cerebral palsy and you will have a good ideal independent life.”
Like autism, I hid it and behaved. It hurt. My body-brain was desperate to do what it wanted to do naturally. A fateful event in autumn 2001 did indeed help my neuroplasticity a little. But until 2013, until I joined several support groups for cerebral palsy and disability and advocacy, I had no idea that I had the ability – the freedom – to just be CP.
This came on the heels of my autism diagnosis, thus my head was reeling from multiple realizations and understandings that were like sledgehammers being dropped not on to my head, but at my feet, to pick up and wield.
I allowed my spasticity to spaz when it wanted. I no longer covered it behind being tired… sure, the spasticity and ataxia got considerably worse with exhaustion… but sometimes it happened just for no reason. I had spent my life forcing my left side to be compliant and Normal* and I really was tired. It hurt to force it down.
In the Stephen King book Firestarter, Charlie McGee admits that it felt good to use her Pyrokinetic and telekinetic powers and that it actually hurt to stop. It hurt to hold them back. I know why. Autistic Burnout and inertia and catatonia, which also happen with cerebral palsy, will happen after too long a period of hiding, faking, play-acting. The brain finally snaps and cries out NO MORE.
Sometimes, friends who see me wonder if I am tired because I’m holding my left arm in pronation, my left wrist and fingers in flexion, my left foot in supination. And finally, I tell them that it is merely because I’m not concentrating on holding it back.
Of course I do physical therapy. From the outside, my combination of isometrics, qigong moves, slow holding stretches, deep breathing exercises, and basic physical therapy motions might look like yoga. As I have a stress response to people insisting that yoga would be wonderful for my chronic pain, I don’t call my exercises yoga.
But yeah, sure, some of it is essentially modified yoga poses that are designed to be gentle and restorative without the pretentiousness sanctimonious attitudes and price of not only money but energy (fibromyalgia loves to devour energy).
I really love my exercise and while I don’t really want to do it with anyone – maybe with husband or one other mild CP person – I want to be acknowledged for at least taking steps to care for myself.
 I didn’t start using adaptive devices, in my case a cane, until I was thirty years old. I had been told I didn’t need one. But screw that.
Now, at age 36, I own several shiny canes of various sizes and shapes and colors. I have one with rubbery feet! A cane helps me balance both sides of my body, the hemiplegic left and the overcompensating right. It also acts as a status symbol for abled folks- see, I am crippled enough to park in this handicapped spot – and for the unspoken denied disabilities hierarchy, especially in cerebral palsy: I still have CP, not as bad as you, but I deserve a seat at the table. Having canes or crutches means that it is okay to accept help to make life easier.
 My husband buys me alternate devices for kitchen and bathroom to adapt to my limits and needs. Latest example, a toilet plunger with its own plunger to lessen the exhausting force of plunging. Plus it includes a sink plunger head. He’s bought me cripple friendly utensils, shower attachments, stepstools, kitty litter scoops, sex toys, coffee grinders.
Being disabled means needing adjustments made around my limitations, ever little bit at a time.
Self care really is a revolutionary act in this society.

(*Normal: I firmly believe there is a normal, a medical scientific Normal, and I am totally not it. I loathe the platitudes like “normal is a setting on a dishwasher” or “there is no normal, there never was” because it invalidates so much about myself that I might as well not exist.)

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