I’ve become afraid of my body. I appreciate her and all she has carried us through, but I’m still afraid. I’m afraid of new treacherous body tales, new pain and an uncertain future. I’m afraid of its fragility. I’m afraid of the inevitable.

In 2018, I drew this ‘Torn’ illustration in response to a series of mysterious chronic conditions arising, seemingly unrelated to my muscle-wasting condition. I had begun to feel pain years before, resulting from a body that is breaking down, but from 2016 on I became enraptured in chronic illness and pain and new diagnosis journeys.

What is Pain?

Pain is a way of being in the world; a way of being one with existence and detached at the same time.

Pain is a privilege of the living, an aperture to death.

Pain is an agonizing affliction.

Aching pain. Silent pain.

Physical pain. Emotional pain.

‘Can anyone hear me?’ pain.

‘Please, leave me’ pain.

‘Why are you here?’ pain.

‘Can I make it through?’ pain.

Pain that has no silver lining. No smile to contain. No positivity to quench.

Pain that obfuscates any possibility of light at the end of the tunnel.

Pain that combats itself through intimate touch; a natural painkiller serving a blurred dichotomy between aching pleasure.

Pain is an intoxicating tonic giving the ability to remove oneself from its own skin - compromising ourselves with its lure, many times disguised as rage or hopelessness.

Pain has become a part of this body - decided upon since the genetic union of my biological parents. After many years of searching for answers and pleading for allies, I learned my condition was globally ultra rare and untreatable, and would lead me to complete immobility, top to bottom, but one can’t truly understand what a prognosis means until they’ve traveled through it.

At diagnosis, no one tells you there will be a list of progressive residual side effects that will cellophane-wrap your entire life including chronic pain. No one tells you about the pain. The pain. It is an exhausting daily routine. I live in it, around it and beneath it every day. There is no choice.

My relationship with my body is one of duality. I’m afraid of her and her ability to reverberate pain emotionally and physically. I’m also in awe of my body’s ability to endure. Yet still. The physical fragility is what frightens me. Everything is painful. Everything. My body is always screaming, ‘I AM IN PAIN!’ in the smallest and most unforeseen ways. My neck has become a floppy rod of pain I can’t count on. My fingers now tire solely from tapping on my phone screen.The sudden trouble with breathing, the scary spontaneous choking episodes with no witnesses to save me. Seeing other patients like me with breathing machines, tracheotomy recommendations, bedridden or dead from the by-product of a muscle wasting disease - all things I was told weren’t side effects of this condition in its early days of understanding.

There are days I just can’t and I don’t. I’m so sad. I’m so lost in the pain. Other days, I assimilate, accepting it's there and a part of my days forevermore. There is a frustration with not having a choice which can trail to humility, ‘How dare we think we get to have a choice?’ But our pain doesn’t always have to have an inspiring ending or interlude or lesson to learn. We don’t have to compare it for perspective. It doesn’t have to benefit others or be something we attach meaning to - threading in a purposeful tale or positive arc. There doesn’t have to be perspective when darkness is eclipsing you. It just exists. It hurts to hurt. And that is enough right there. To all those hurting right now, I think of you. I love you. #kamdraws #kamswheelstravel

For more ♿️ travels, disability and accessibility musings, mini-memoirs & art @ https://Instagram.com/kamredlawsk