For almost thirty years I’ve lived with FSHD. That feels surreal. I only became a permanent wheelchair user in 2020, long after the diagnosis, falls, and stubborn years of refusing to give in, but in many ways, I’ve lived two lives: the one before using a wheelchair, and the one after.
Yet, my mind hasn’t accepted that fully.
For the last few nights, I’ve been dreaming as an able‑bodied person. The teenage version of me who could walk up the stairs, run, climb, jump, skate, canoe, sail, build dens, ride my bike, play instruments, and do all the things I wrote about years ago before walking became difficult, back when my body worked semi‑normally.
In these dreams, I’m in my childhood home. I feel the carpet under my feet. The bumpy artex wall against my palm. I climb the stairs, take the first door on the left, and walk into my bedroom. I’m in the garden, kitchen, or garage. I’m talking to my mum and dad. I’m at school, chatting to teachers, doing lessons, surrounded by friends, mucking around, doing things I probably shouldn’t. I’m moving. I’m physical. I’m free.
Then the pain wakes me.
There’s this awful, suspended moment between dreaming and waking where my mind still believes I’m that able and active teenager. I try to move, turn, or roll over. Anything my mind thinks it can do. Then reality hits. Not gently or gradually, but like a weight dropped onto my chest.
The duvet is heavy.
My body is heavier.
My arms ache.
My back pinches.
My legs scream.
My muscles burn.
My joints feel like they’re breaking.
My mind hasn’t caught up to my body yet. The dream is still bleeding into my lived experience, and for a few moments I genuinely forget I’m disabled. I forget that I can’t bend my knees, roll onto my side, reposition myself without help, or do any of the things my brain still thinks are possible. I forget that I’m not the boy in the dream anymore. I’m the man whose body has been slowly deteriorating for decades, trapped in a broken body.
Those moments between dream and reality are brutal. My brain is still in the past, but my body is very much in the present where I sleep on my back because my muscles can’t support side‑lying anymore, and where I barely sleep because I’m in so much pain. The reality I live every day.
I groan, struggle, and even forget Hannah is next to me. I try to move my arms, but they fight against the duvet. I try to shift my legs and they refuse. I’m trapped, pinned by weakness and pain. I start to panic. My heart races. What can I do? How do I get out of this?
It feels so raw. Maybe it’s because my disability has reached a new severity. Maybe it’s because the dreams are so vivid I can still feel the weight of my body on my legs. Maybe it’s the gap between who I was and who I am.
I met Hannah in 2017. I could stand, walk, and get up and down. I could sleep on my side, back, and front. I lived. Maybe not the most physical life, but it was independent. It’s not even been a decade. My mind is battling to ignore the weighted existence of my life before now.
Eventually my mind settles. I call Hannah, and she helps reposition me.
I’ve learned that this violent emotional whiplash is more common than you’d think, but rarely spoken about because it sits in that uncomfortable space between grief, identity, memory, and body. It affects people like me with degenerative conditions, but also those with spinal injuries, amputations, chronic pain, and long‑term illness. All of us experiencing this over and over. Dreams that feel more real than waking life because the brain still holds those motor memories. Moments where your mind betrays you, leaving you angry and heartbroken as you lose your body all over again.
Research suggests the brain stores “body memories” and defaults to the last fully intact body setting. Like resurrecting at your last save point because the latest software update hasn’t been installed.
The emotional impact is huge. Every morning you’re reliving trauma you thought you were over. Grief with fresh edges. Not because you’re walking again, but because the dreams are rooted in real memories. A real you that existed for a long time. It’s not a dream. It’s not a fantasy. It’s remembering.
The problem is that no one wants to talk about it. It’s too raw, exposing, and close to the bone. It cracks the façade of “accepting disability” and not longing for your old body, which brings judgement.
I’m proud of who I am. I don’t want this to feed ableist narratives, but the truth is that missing your old body doesn’t mean you hate your disabled one. It just means your brain hasn’t caught up with your lived reality. I won’t hide from it. I’ll share it here, as I always do, just in case others want to know they’re not alone.
Meanwhile, somewhere between my mind forgetting I’m disabled and my body reminding me, I’m still learning how to live.
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