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.)

Depression (Again)

Depression makes it hard to write,  to see an idea all the way through. I have dozens of drafts of half-written posts my depression has convinced me aren’t worth finishing. 

Depression tells me I’ll never be able to support myself by writing, and that I don’t deserve to. Depression tells me it’s not worth trying. 

Depression rides like a raven on my shoulder,  whispering my fears as truths. It tells me hope is a lie, that better lives are for better people.  Depression makes me forget times I have loved myself whole. 

Yet I fight. I write. I take pills and walks. I treat and manage my depression day by day, as best as I can each day. Sometimes I’m almost well – capable of keeping up with responsibilities,  in positive contact with friends and family, and well rested enough to be a patient and kind parent. 

Some days I’m not well at all. Basic tasks overwhelm me and I feel isolated from the world around me. On those days my job is to survive,  to make it through to the next good day even as I doubt that day will ever come.

Depression is a part of my life.  Given the traumas I’ve endured and the financial insecurity I still live with, it’s not surprising.  But I don’t want to let it take my life. So I do what I can on the good days – like calling in my refills before my prescriptions run out – to survive the darkest days. I fight, because my stubbornness has served me well so far.

You Have to Take the Stairs

“There is no elevator to success. You have to take the stairs.”

Color photograph shows a painted set of stairs with words painted on the risers. The words read "There is no elevator to success. You have to take the stairs."

Color photograph shows a painted set of stairs with words painted on the risers. The words read “There is no elevator to success. You have to take the stairs.”

This is meant to be inspiring and motivating, to encourage people to push themselves. Like most disability inspiration porn, it is meant for abled people. Disability inspiration porn is a style of message using the challenges faced by disabled people to inspire abled people to do more. Overwhelmingly such messages ignore the social model of disability, or the ways in which society excludes people with disabilities and creates additional barriers to our full participation in society.

“There is no elevator to success,” the writing on the stair risers reads. “You have to take the stairs.” I’m reasonably convinced whoever came up with these words wasn’t thinking of “truly disabled” people when they said this, but rather “lazy” people who “don’t need” an elevator.

Black and white photo shows disabled activists climbing the steps of the US Capitol building in March 1990, leading to the passage of the Americans with Disabilities Act.

Black and white photo shows disabled activists climbing the steps of the US Capitol building in March 1990, leading to the passage of the Americans with Disabilities Act.

The historic Capitol Crawl shows us what it looks like when people who cannot walk take the stairs. The disability activists who pulled their bodies up those steps didn’t do so to say “See, we’re good. No help needed here. We’re too inspirational for that!” They did so to demand dignified access to participation in all of society. I do find this event inspiring because it inspires me to follow in the path of my disabled siblings and to fight for their rights as they have fought for mine. It doesn’t inspire me to say stairs are good enough because those special disabled people will just crawl if it really matters to them/us.

Too often our struggles are romanticized. Our persistence is admired, but in ways divorced from helping us not have to be so much more determined than people for whom stairs are easy. There should be an elevator to success because success should not be limited to the abled.

Color photograph shows the torso and legs of a white man in a wheelchair. White and orange text overlaying the image reads: "the only disability in life is a bad attitude - Scott Hamilton"

Color photograph shows the torso and legs of a white man in a wheelchair. White and orange text overlaying the image reads: “the only disability in life is a bad attitude – Scott Hamilton”

Stories of disabled people should ideally lead to greater understanding and empathy, and a desire to help us knock down the socially constructed barriers in our way. Our struggles should inspire people to ally with us as we fight for dignity, healthcare, marriage equality, and a livable income. All too often disability inspiration porn instead helps abled people to ignore or accept our struggles as inevitable. If “the only disability in life is a bad attitude” as Olympic figure skater Scott Hamilton said, then there’s no need to provide an elevator or ramp or eliminate strobe lights or turn down sensory overload-inducing sound or in any other way accommodate and include us.

There should an elevator to success, because success should not be limited to the abled.

Forgive or Forget

I’m in third grade at Christian school watching a McGee and Me video in the cafeteria with the rest of my class. Suddenly someone in the video shares the same name as the man who molested me and escaped legal punishment.  I start crying and panicking.

My teacher, an angry former substitute we got after our beloved gentle teacher eloped in Vegas, is irritated.  She wants me to be quiet and sit down.  She can’t spare a moment of compassion for me. She tells me that since it’s a common name, I need to get over it. I’m going to encounter men with that name all my life and I need to stop making a big deal of it. And then she tells me to forgive the man who isn’t sorry he raped me.

I spent years trying to forgive him, praying for him, and feeling guilty for the harm he did to me. Now I always hear commandments to forgive in my third grade teacher’s scornful voice. They are all poisoned by irritation at victims for having had emotional damage done to us. They all sound like efforts to silence, not to truly heal.

Trying to forgive my rapist delayed my ability to forgive myself.  Any guilt I absolved him of was magically transferred to me. Forgiveness did me harm.

I don’t tell people they have to forgive others, especially unapologetic abusers. Sometimes the easiest way to heal and move on is to NOT forgive, not forget, but remember where they were at fault. Sometimes that’s the best way to forgive yourself. 

HALT for Mental Health

My biggest advancement in treating my anxiety and depression is an incredibly simple tool I will share with you. It’s called HALT which stands for Hungry,  Anxious,  Lonely, Tired.

Periodically throughout my day I pause and ask myself how I’m doing. Should I grab a snack or meal?  Is it time for me to take am anxiety pill? Do I need to reach out for human connection? Would I feel better for a coffee or an early bedtime?

I can take it past those basic four. Do I have an unmet physical need? Should I stretch or change my posture? Do I need to pee? Am I breathing deeply?

Prevention has been the best treatment for me. When I take time to HALT, I feel better.

No Immunity

I can read stories of fellow cult survivors and be okay. I may feel sorrow or anguish but I’ll be okay. The writings on cults that bother me are from people who have not survived one, confidently boasting that they’re too smart to fall for such nonsense. It makes me simultaneously mad to see them victim blaming and anxious that they’ll be next.

People don’t join cults because they are “stupid”. People don’t join cults because they are less intelligent than some standard. People don’t join cults.  Cults recruit people.  This distinction matters and it’s part of why intelligence is no immunity. 

Cults recruit people who are grieving, people in pain, people trying to recover from addiction.  Cults recruit people who are lonely,  who have been abandoned,  who want to belong.  Cults recruit people who believe in a cause and want to make the world a better place.  Cults recruit people who need people. 

They do it with love bombing, group cohesion activities designed to confuse the mind or flood the body with endorphins.  They do it by helping people get off drugs and giving them a sense of purpose.  They do it by tapping into the best human impulses and the deepest human needs.

Smarts are no match for these techniques.  Intelligence doesn’t stop a desperately needed hug from producing oxytocin even if the person giving it is trying to recruit you. The best defense against cult recruitment is a stable happy life with a solid support network.  That’s it. If you’ve managed to avoid cults, you’ve been lucky.  You haven’t been better than survivors,  just more fortunate. 

Imperfect Heroines

I find as I grow older, I have a greater appreciation for complex women characters.  Good and bad and understandable;  I want them to be interesting.  This has come in company with my growing tolerance for the imperfections of my family.

Yes my grandmother was a cult leader who hurt countless people and contributed to the early death of at least a dozen. Yes my mother left me and my siblings in my grandmother’s care as she furthered her education and supported a family of five.

But they both taught me so much, things I might not have learned in a happier home or with less ambitious women as my role models. They were both women in a man’s world and they taught me ways to navigate a world built by men for men.

My mother taught me work ethic, charity even while living in poverty, and the importance of checking sources.  My grandma taught me how to write and tell a story, how to debate and win, and how to give a press interview.  They wanted different things for my life, but in their own ways they were both preparing me for greatness.

I marvel at what a gift that is, when it so easily could have gone differently.  I was the last child, slow to speak and hit other developmental milestones.  I was born inconveniently in the midst of my parents’ divorce. I was a girl in a particularly sexist flavor of Christian ideology.  And yet, I was raised as if I would be great.

So today I am grateful for the lessons I learned from my imperfect heroines. And that is a good place to be.