There is decay beside me. An unwavering smell of death coming from somewhere, although whether it is the decomposing flowers or my unwashed hair, I do not know. Perhaps it is me, emitting a stench that will finally give some visibility to the way I feel – rotten inside.
Maybe it is that writing on sickness causes such decay. There would be no career of mine if not for debilitating illness, pain, suffering. Tethered to bed, I tweet my achievements, my work successes. Every article I produce racks up likes, comments, emails from strangers applauding me, thanking me for doing such work.
Bed is where I am worker but then patient, prisoner. Here I perfectly arrange myself so the faded grey headboard could in fact be a sofa, so my greasy hair, creased pyjama shirt appear as a slick bun, office casual. I file an article on my sex life then Zoom a specialist in Barcelona, I take down the bun, allow the messy hair to assure the doctor, yes I am sick, I need help but no I am not a slob, this isn’t my bed, yes I work, no I am not depressed.
I log back online. People write to say they feel understood, seen, acknowledged, more thank you’s, shedding light, explaining the truth, saying it how it is.
Is it really how it is if this persona of me, of sickness but success, is built online for the consumption of others? The Internet is voyeurism, first and foremost. Countering success with surgery scars and hospital gowns is a futile attempt to reconcile the seemingly ever more disparate parts that make up this one body. Some might say oversharing is not possible online, more celebration to show the real you, the authenticity, the bits to stop it being a highlight reel. The reality of sickness. But mostly those watching are afraid of becoming just like you.
This opportunity to write this is the product of those personas, which one exactly is hard to place. Perhaps the jarring of the two is acknowledged as useful but what good does that do if the well people observing it, sending the congratulations and adoration do nothing more to further progress for sickos like me in reality. After all the internet’s existence is not a bodily one. I announced this show from a hospital ward, accompanying the program artwork with a tearful, morphine high selfie. You all said I was brave.
With every piece of work comes a tightening of the tether between sickness and me. I am now nothing without it. The successes are shaded by the reality of chronic pain. Days in bed, on repeat, end on end, twenty four, or sometimes forty eight hours pass by without much more than bathroom breaks and meals on trays. What is the use in a career if daily existence is a fight you’re always losing? There is necessity in jobs, misplaced pride in contributing to something that might, but likely won’t, make some kind of change, an undeniable egotism involved in choices to make public contributions, to create something that can be consumed and commented on in real time (or internet’s time).
When the battery dies and stories you write are quickly forgotten, you are left rotting in bed, only your body to keep you afloat.