The Real Deal: Cerebral Palsy, Fibromyalgia, Epilepsy, Dyspraxia, ADHD, Autism, Depression
First, we will start with waking up.
I was dreaming heavily about a zombie apocalypse. The uninfected had to wear special ID bracelets and get monthly innoculations; sometimes they worked. When Adam shook me awake most of my brain was unresponsive. In cerebral palsy, this means a sort of catatonia. I couldn't move. Adam pulled me upright and I became a marionette, slumped in a ballerina's pose. He swung my legs over the side of the bed, dead weight, and as I leaned against the dresser my left foot remained on its toes. My speech was slurred and aphasic. But I laughed through it because this was what always happened. "She's poseable!" I giggled.
My arms remained stiff and above my torso, my head tilted. Adam massaged me and jiggled me and applied accupressure. Luna nuzzled my nose and mewled. I managed to perform a basic tai chi stance to balance. My left side was still a ghost. That part of my brain was still halfway dead and sluggish. I found some of my pills and my coffee smoothie.
I took twenty minutes just to get dressed. My left eye and mouth drooped, stroke-like, and I cursed at it.
Downstairs, after breakfast, we rinsed dishes and explored the concept of auditory processing dysfunction when I reacted badly to the running water, and we tested different flows with the faucet controls. I fed the cats.
At some point, I felt it like a wave cresting beginning in my gut and lower spine. Adam was right there, and when I grumbled "Ahh, crap" I lost myself and became a twitching, myoclonic half statue. He wrapped his arms around me. I drooled on his arm. I kept forgetting to count the seconds. He held me and said, "I've got you." I came out of the seizure with a gasp and a groan of failure and frustration. He led me to the stairs. I crawled up like a kitten.
It's hard to put all the details together right after. I am among those who can write freely. My brain automatically instinctively compartmentalizes. It all hinges on what happens when I wake up. In the middle of the night when I need the bathroom, that part of my brain carefully eases my body out of bed and stumbles to a goal. I am mostly asleep. In mornings or afternoons when I actually awaken, all of my brain struggles to come online and it causes overload. I become a poseable doll, autistic inertia, catatonia, executive dysfunction, cerebral palsy hemiplegia, full spasticity, pain bursting like fireworks, fire racing through my muscles, ice crackling under my skin layers, barbed wire wrapping around my nerves. Thoughts rushing forth like white rapids. I can't exist, where am I, I was just in a different place, what is this thing that has caught and trapped me, this is my body, I feel corporeal.
In my dreams, more and more, my knees are destroyed and I find myself walking across cities hobbling sometimes crawling, and I can never find a wheelchair or a walker, and the walls I lean against shift and undulate. Nobody offers to help. Behind me, the empty hollows follow and observe.
Please, comment if you understand, if you are under the same neurodivergence. You may have better words. All I have are words typed. I have begun to fear speaking. Phones ringing make me flinch. Always, I feel wrong. Always, I have done the wrong thing. I have disappointed, frustrated, exasperated, hurt, damaged trust, broken promises, destroyed hope, made guilty, because I am ill. I do not have alexithymia but sometimes my emotional reactions flatten and sink into the empty hollows. You tell me I said something cruel but you use my disintegrating memory against me. That never happened, you misinterpreted, and now I am the villain. I cannot trust myself. I fear myself. I have blackouts, shutdowns, meltdowns, and I will never tell you what I really feel because you will scoff and quickly blame me, just me. You want me to return to a self who was never true anyway, who collected masks over a lifetime, who wove stories to hide the strangeness happening inside a malfunctioning brain. Malfunctioning according to whom? No, merely atypical, far from average, not socially normal. I was never the person you saw. I was an illusion. I performed because I had to keep myself alive and functioning.
They call it Autistic Burnout. When I collapsed. When the masks shattered. Executive Dysfunction. Autistic Inertia. When the true, real, genuine self emerged with wings brighter than the sun and stars. The self who was wrong, who was obsessive and compulsive and who disobeyed and who screamed against those strange structures. The sick, glittery creature who touched everything and grabbed the things that seemed soothing over and over, detrimental, damaging, hurtful, why have you done this, you are not supposed to do any of this, you have hurt us. And I did. And I have. And I have grasped control over the years, little by little with help from those who are there and have been there. I feel another metamorphosis, but one you won't see. I am ill, I am dysfunctional, I am very damaged, I am not okay, and that right there is all right. I have counselors. I have sounding boards and therapies and remedies. Soon, it will be all right and it will continue to be all right. I am building shields against words. But not the words I choose. You can tell me I am wrapped up in labels and names and diagnoses, you can tell me I am too influenced by friends who have my same conditions, you can tell me my illnesses have taken over my life. I will simply agree, and if I feel strong enough I will launch into a monologue about neurodevelopmental plasticity in adulthood. I stopped fighting. This is flow.
I was dreaming heavily about a zombie apocalypse. The uninfected had to wear special ID bracelets and get monthly innoculations; sometimes they worked. When Adam shook me awake most of my brain was unresponsive. In cerebral palsy, this means a sort of catatonia. I couldn't move. Adam pulled me upright and I became a marionette, slumped in a ballerina's pose. He swung my legs over the side of the bed, dead weight, and as I leaned against the dresser my left foot remained on its toes. My speech was slurred and aphasic. But I laughed through it because this was what always happened. "She's poseable!" I giggled.
My arms remained stiff and above my torso, my head tilted. Adam massaged me and jiggled me and applied accupressure. Luna nuzzled my nose and mewled. I managed to perform a basic tai chi stance to balance. My left side was still a ghost. That part of my brain was still halfway dead and sluggish. I found some of my pills and my coffee smoothie.
I took twenty minutes just to get dressed. My left eye and mouth drooped, stroke-like, and I cursed at it.
Downstairs, after breakfast, we rinsed dishes and explored the concept of auditory processing dysfunction when I reacted badly to the running water, and we tested different flows with the faucet controls. I fed the cats.
At some point, I felt it like a wave cresting beginning in my gut and lower spine. Adam was right there, and when I grumbled "Ahh, crap" I lost myself and became a twitching, myoclonic half statue. He wrapped his arms around me. I drooled on his arm. I kept forgetting to count the seconds. He held me and said, "I've got you." I came out of the seizure with a gasp and a groan of failure and frustration. He led me to the stairs. I crawled up like a kitten.
It's hard to put all the details together right after. I am among those who can write freely. My brain automatically instinctively compartmentalizes. It all hinges on what happens when I wake up. In the middle of the night when I need the bathroom, that part of my brain carefully eases my body out of bed and stumbles to a goal. I am mostly asleep. In mornings or afternoons when I actually awaken, all of my brain struggles to come online and it causes overload. I become a poseable doll, autistic inertia, catatonia, executive dysfunction, cerebral palsy hemiplegia, full spasticity, pain bursting like fireworks, fire racing through my muscles, ice crackling under my skin layers, barbed wire wrapping around my nerves. Thoughts rushing forth like white rapids. I can't exist, where am I, I was just in a different place, what is this thing that has caught and trapped me, this is my body, I feel corporeal.
In my dreams, more and more, my knees are destroyed and I find myself walking across cities hobbling sometimes crawling, and I can never find a wheelchair or a walker, and the walls I lean against shift and undulate. Nobody offers to help. Behind me, the empty hollows follow and observe.
Please, comment if you understand, if you are under the same neurodivergence. You may have better words. All I have are words typed. I have begun to fear speaking. Phones ringing make me flinch. Always, I feel wrong. Always, I have done the wrong thing. I have disappointed, frustrated, exasperated, hurt, damaged trust, broken promises, destroyed hope, made guilty, because I am ill. I do not have alexithymia but sometimes my emotional reactions flatten and sink into the empty hollows. You tell me I said something cruel but you use my disintegrating memory against me. That never happened, you misinterpreted, and now I am the villain. I cannot trust myself. I fear myself. I have blackouts, shutdowns, meltdowns, and I will never tell you what I really feel because you will scoff and quickly blame me, just me. You want me to return to a self who was never true anyway, who collected masks over a lifetime, who wove stories to hide the strangeness happening inside a malfunctioning brain. Malfunctioning according to whom? No, merely atypical, far from average, not socially normal. I was never the person you saw. I was an illusion. I performed because I had to keep myself alive and functioning.
They call it Autistic Burnout. When I collapsed. When the masks shattered. Executive Dysfunction. Autistic Inertia. When the true, real, genuine self emerged with wings brighter than the sun and stars. The self who was wrong, who was obsessive and compulsive and who disobeyed and who screamed against those strange structures. The sick, glittery creature who touched everything and grabbed the things that seemed soothing over and over, detrimental, damaging, hurtful, why have you done this, you are not supposed to do any of this, you have hurt us. And I did. And I have. And I have grasped control over the years, little by little with help from those who are there and have been there. I feel another metamorphosis, but one you won't see. I am ill, I am dysfunctional, I am very damaged, I am not okay, and that right there is all right. I have counselors. I have sounding boards and therapies and remedies. Soon, it will be all right and it will continue to be all right. I am building shields against words. But not the words I choose. You can tell me I am wrapped up in labels and names and diagnoses, you can tell me I am too influenced by friends who have my same conditions, you can tell me my illnesses have taken over my life. I will simply agree, and if I feel strong enough I will launch into a monologue about neurodevelopmental plasticity in adulthood. I stopped fighting. This is flow.
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