Jehangir Saleh wrote these words about his life with Cystic Fibrosis in 2005. I read them a few months ago but they still give me chills each time they drift back through my mind:
“These lungs – which perhaps I should name as to properly address them as they seem to have a mind of their own – they will become tired. I will become tired. I will forget what air tastes like as, like two gross grouper fish heads, they start to smell and decay, refusing to perform their function.
When I die
I will be grateful for convicted serial killers who show us what we are capable of and remind us to pretend that we have choices even though I can prove philosophically that we don’t
when I die
Don’t bury me
Save the ground for something that grows”
He passed away in 2013 at the age of twenty-eight. I first heard from Jehangir’s sister, Jasmine, the day of my uncle’s funeral this past August. Death was very much on my mind. She had heard about my work and wanted to let me know about the memorial lecture her family holds annually at Ryerson in her brother’s memory.
Jasmine sent me links to her brother’s writing and I was immediately transported to his hospital room, to the bar where he met his date and chatted on separate computers, to his ruminations on life, love and death.
It took me back to my hospital bed, where I first imagined performing my work while lying flat on my back, gowned, half-naked, surrounded by residents who smirked when I talked back. I wanted to wear the gown again, but in a place where they would acknowledge my authority and be forced to hear my voice. I related intimately to Jehangir’s irreverence, his rebelliousness, his refusal to inhabit the hospital as a passive recipient of care. Our shared practice of using of language, poetry and storytelling to flesh ourselves out as actors, and as whole bodies in our own healthcare dramas.
There is a cliché about being “positive” in dire healthcare situations, as though feeling down is a matter of not “seeing” what’s good. But when nothing good is readily available… it’s what we fight for. It’s why we fight. Jehangir reminded me how we create the good out of the mucus, the shit, the blood and the pain. We don’t have to be only devastated or only grateful when we can use whatever tiny streams of energy we can muster to construct a different world in the most minimal ways in the most restricted and sterile of environments.
I had the opportunity to meet Jasmine and the rest of Jehangir’s family at the lecture on September 27th where philosopher Kay Toombs reflected on Jehanghir’s work in her lecture, and fellow healthcare artist and creator Julia Gray talked about her groundbreaking work on Cracked: a new light on dementia.
To stay in the loop for future events, like the Facebook page for the Jehangir Saleh annual memorial lecture.