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.
I drew 'Torn' in response to a series of mysterious chronic conditions seemingly unrelated to my muscle-wasting condition. Some of the pain is from a body that is breaking down, but since 2016 I became enraptured in chronic illness and new diagnoses’ 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 of 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, a blurred dichotomy between aching and pleasure.
Pain is an intoxicating tonic with the ability to remove oneself from its own skin, compromising oneself 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 years of searching for answers and pleading for allies, I learned my condition was globally ultra-rare and untreatable, one day leading 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 to cellophane-wrap your entire life, including chronic pain. No one tells you about the pain: 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 my body, its ability to reverberate pain emotionally and physically, but I’m also in awe of its 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 others like me with breathing machines, tracheotomy recommendations, bedridden or gone 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 its existence 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?
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 or thread 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, physically or emotionally, I think of you. I love you. #kamdraws #kamwrites #kamswheelstravel
For more ♿️ travels, disability and accessibility musings, mini-memoirs & art @ https://Instagram.com/kamredlawsk