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I should go to sleep, I have acupuncture tomorrow.
The high has eliminated enough pain to help me feel more lively. The gabapentin and baclofen will kick in soon. I should go to bed. The shower was great. The ataxia acted up but I was able to stabilize by concentrating while rubbing in the soaps. This bralette is incredibly soft. It's like Puck's fur, his baby fur. Bunny fur.
Puck will probably put himself to bed in husband's clothes cabinet, in the cubby with the flannel pajamas.
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The box office hit is a coming-of-age film documenting the life of a young man with cerebral palsy
In a behind-the-scenes documentary, director Yang Lina commented, “There are 80 million disabled people in China, but we seldom see them on the streets. Where have they gone? Did they make themselves invisible? Do they not want to go outside?” This explains the movie’s Chinese title, Small Me (小小的我). The film explores a group of small and unnoticed individuals in a big world.
Xiao Jia, a comedian with cerebral palsy, was invited to host Big World’s Shanghai premiere. Xiao Jia is a popular contestant from the standup comedy reality show Rock & Roast. He tells the audience, “I am one of the millions of Liu Chunhes, he gives me the courage to stand up here… Maybe Liu Chunhe’s arms and legs look wobbly, and you’re not used to seeing that. But I want to say…don’t we all go wobbling through life?”
After the movie’s release, the production team also released a short documentary following people with cerebral palsy in different professions: chefs, delivery drivers, dancers, poets, and full-time dads. The film especially resonated with people with disabilities, receiving praise for highlighting a rarely discussed side of China.
Big World also inspired people with cerebral palsy to share their stories on social media. One RedNote user posted, “Maybe you think our life is hard, but for us this is normal, this is our life… We don’t think it’s a hardship.” In other videos, RedNote users with cerebral palsy share their makeup routines, parenthood stories, cosplays, food recipes, dating vlogs, and much more.
Overhearing my husband explain Cronus Max to both roommate and his gaming group:
"No no, it's meant for people with disabilities like cerebral palsy! It's meant for [Lotus], not you or me. Our hands are fine with game controls, hers not so much, you know?" And roommate was like "Oh, yeah, cool, makes sense."
So I yelled from the bedroom, "I fucking want one but it's too expensive" and husband yelled back, "I know, right! Make gaming accessible AND affordable, please!" and it felt like a verbal fist bump.
Anyway, I just asked this in my FB palsy group. Perhaps folks here will get it.
Hey, is it a palsy thing when no matter how you sit, your torso leans back and your body slides down into a recline?
My mattress is adjustable, and I have noticed that no matter how high up I have the head, my body wants to just slide down and lean back until the lordotic curve is more pronounced. It's the same when I sit on a couch.
Someone asked me my thoughts, as a spastic person, on the removal of "spaz" in current songs.
I'm only gonna speak for myself: I'm fine with that. I also don't have a reaction to spaz the way I would a different slur. Is it because I spent my entire life as a spaz and have learned to shrug it off? Is it because I joke about being a spaz so often that it just doesn't register when an abled person says it? I can't answer that right now.
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Because I'm so used to waking up stiff and spastic, I often forget to do the bed exercises my PT assigns. They're basically stuff you do with a three-month-old baby, because folks with spastic cerebral palsy and infants under three months share the Moro Startle Reflex, and the limb exercises and torso exercises are supposed to strengthen stability so that when the reflex hits we don't hurt ourselves. And sometimes my body gets...whiny. Like a tantrum. It's really not that hard to do the cycling legs workout is it?!
I wonder if this will happen more frequently as I get older. It feels like executive dysfunction but sideways.
I'd like feedback from anyone who gets that, no matter the disability.
So, here's something unique that's been happening in my neurology with five months of medical marijuana:
My spastic hypertonic body has, at random, been having sudden movements, broad tics, and lower muscle tone, like my body is performing katas without me realizing it. The physiologist thinks my saturating my endocannabinoid system has been directly affecting my neuromotor cortex as well as everything that was damaged by the periventricular leukomalacia, that my neuroplasticity might be somehow remapping. That's kind of mind blowing.
When I told my mom about cannabis being anti-viral she said "okay, what the fuck can't this stuff do?" She takes plain CBD for sleep but when I tried her on a little RSO with THC it set off her anxiety because she couldn't control her sensory reactions. My dad, meanwhile, showed me how to smoke weed out of a corn cob pipe and tried my sativa vape. It was fun.
My life is getting really really weird.
Update: a friend sent me this. My husband was right again.
Considerable evidence demonstrates that cannabinoid agonists impair whereas cannabinoid antagonists improve memory and plasticity. However,
The back pain was so bad that my Shiatsu certified husband, he of the 58-inch barrel chest, picked me up, cracked my back, put me on the floor, adjusted my hips, flexed my feet, rolled me around, performed compression massage, shook my legs out, and did physical therapy manipulations that legitimately began to resemble a BDSM session - including me reacting with an orgasm face.
And then I got high and took double the baclofen.
The brain is wired funny when it comes to pain, pleasure, and fetish. The sounds we make during deep massage and the sounds we make during sex are incredibly similar. The term paingasm is a thing.
