I feel like a bad partner, a useless friend, an absent daughter. I am self absorbed, my body taking all of my attention all of the time, requiring so much from me, and those around me, just to stay on an even keel. Nowhere close to pain free or happy, just not thinking of ending it all of the time.
The only way to take a break is to forget the body itself exists. The only way to socialise is by first dissociating. Detachment from physicality and attaching to riveting conversation or attempting to try and help others with their life dilemmas, a way to feel useful. But now by creating dissonance between body and self, neither feel like me.
I forcefully click off on my body’s internal switch, pain has no place on the weekends when I want to be a real person in the world, escape the loneliness of 9-5 Monday to Friday when others are working hard and I am watching the clock melt away both hoping for time to pass faster and to get some back so I too be a person. Can work hard, do something, make something. [I want to] feel less like a mass of cells and bones and more like myself despite not knowing who me is anymore. She has been missing for a while, disappeared in the midst of illness and unable to reemerge.
Pain took spontaneity so I tried to take it back and now everything is worse. I ignored the signals, the ache between my legs making it difficult to get up a friend's stairs, I would not give in, I would not leave the good time I was having to return to the house, the place I am kept captive by my body.
Listen to your body they said, but I am sick of the sound of mine. It screams out for rest, for silence, for darkness, stillness, absence of everything. I can only listen under duress, is a forced agreement really an agreement at all? I will rot in bed for 4 and ½ days in exchange for 6 hours outside. Those limited hours are not pain free, do not be mistaken, the physical body remains the same but the hours for dissociation, for escape, for other worldliness, are gained through repetitive bodily amnesia.
The amnesia makes returning to physical self difficult, a flame remains alight, one that hopes for the pain that reattaches to be lesser, reduced in intensity, somehow easier to accept. In fact the effect is opposite, returning to it is harder to face. The detachment is easily forgotten and the re-immersion into the physical self drags, catching on every thorn, spiralling down deep below the earth, lower than before.
The scalding rubber can no longer compete. Scars form on top of scars, it numbs but does not make an impact. Sweat pools between my legs, behind my knees. Dripping onto cushions, infecting the fresh sheets with yet more evidence of the inescapability of this body.
I am at war with myself. My mind craves movement, speed, ability to grow and coagulate. It is softening from inactivity, words that were once easy to spell escape me, names of things I thought I knew sit on the tip of my tongue, unable to be found: dishwasher, carpet cleaner, coat hanger. Titles of novels I thought were locked safe away for use at any time, are nowhere to be found. Lack of articulation makes me useless at my job, words are my currency, what use is a writer who is haemorrhaging vocabulary.
My mind is on fire but I can’t find a way out. If the physical self is an intolerable place to be and upstairs above that sits a mind stuck in an endless loop of destructive thoughts, flooded with contradicting ideas and arguments, there leaves no place to rest. Everywhere is busy or dangerous or uncomfortable at best.
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I started this essay on the 10th of July, writing fragments over days and weeks and now the first day of Autumn is here and nothing has changed. Pain remains the ruler of my bodily kingdom, my diary administrator, my bookkeeper, my enforcer. I spent a lot of the summer disassociating from my body in order to keep up with others. I wanted to ride bikes, walk through pretty squares, stay up late and get up early. I so desperately wanted to make the most of the moments that were pre planned to be joyful, I couldn’t allow pain to come between me and organised fun. I did swim a lot, in the pool and in the ocean. I woke up early every morning on a camping trip by the Dutch coast, and made it to the sea whilst everyone else slept. I tried to beat my pain, to get in the water before the tingles started, the heaviness came over my legs and my stomach began its turning in response.
I thought the earlier I woke up the more minutes of pain free existence I would be allowed. Some kind of reward for being a smug morning person. Sometimes I snoozed my alarm and so mid walk or mid swim, the electric shocks through my pelvis would start before I was in the water. That is when dissociation was a necessity, until I managed to float.
When I am in excruciating pain, my skin crawls. Fabric touching my thighs is instead hundreds of wasps stuck between the cotton, all piercing my skin in unison. My bones knocking together are guns firing at one another, point blank range. My muscles are stretched in a mediaeval torture machine, ready to snap at the slightest pinch. The metaphors can go on and on but none of them convey what misery pain entails.
The water does not soothe. It does not stop the stinging or the stretching, it is merely a good distraction. The initial shock turns my mind blank, finally, silence. Facing away from the beach and looking out to the empty horizon is a way to feel small, insignificant, not a person at all. At times the temperature can numb my limbs, a burning sensation between my thighs that is a welcome change from the scratching throbbing pulsating. The water is not respite or cure or relaxation. The water is merely a change in scenery.
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After an essay on disabled pain, I have three fitting book recommendations for you all:
First, Lucy Webster’s new memoir, her first long form book project. The View From Down Here is a confronting and beautiful exploration of her life as a disabled child, woman, wheelchair user, patient, and recipient of care.
Next brilliant Jen & her latest poetry collection, Please Do Not Touch This Exhibit, out with Bloodaxe books. Jen manages to encapsulate so many of the complex feelings that come with disability, being a chronic patient and coping with hopes of disabled parenthood.
Finally, Abi Palmer’s Sanatorium, which has been a vital text in establishing my own writerly voice, is now available on audio through the brilliant new platform Spiracle, so if you prefer to listen to your books, head there.
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That is all for now friends,
H x
I'm so with you 💛 beautifully + excruciatingly expressed
Hannah, I feel like you write from inside my own head. Thank you, thank you x