Death Becomes Her
Neither etiquette books nor necromancy texts cover rules for after resurrection. Even accounting for impaired executive function, the likelihood of death from severe illness skews decision-making, shifts the risk calculus, shuffles priorities, tips the scales that weigh the soul. Niko Stratis, in her newsletter Anxiety Shark writes, “(I) spent all my money and lost everything and was tired a lot but I’ll sleep when I’m dead and I always thought I would be dead before I got to really be alive. And yet, here I am.”
You can sleep when you’re dead, but you can’t un-burn a bridge from missing a beloved’s birthday party or remedy a misunderstanding. In severe illness, even unpaid bills or rotting produce can seem like a problem not worth solving because who knows when you’ll have restocked your energy, or your cupboards, or your bank account. Death becomes you and you are unbecoming.
I am desperately, devastatingly lucky enough to be alive with an illness that has killed some of my friends and community members this year, and many more people who went uncounted and unmourned online. To be heading into the New Year well enough to plan a few months out for the first time since 2019, confident I will be alive in Spring. To be measured as “mild” on a scale in which the severe end is incomprehensibly dark unless you have lived through it and adjusted your eyes.
I’ve been re-reading Tamsyn Muir lately, a series I once read out loud with a then-lover while still struggling to formulate words and whose plot would dizzy the most literate of scholars. Not the first book, which NPR describes as “the story of a deadly, dashing cavalier gallivanting around a spooky space mansion fighting monsters” but the second, about “the survivor's guilt and homicidal coping mechanisms of a moody, paranoid, hallucinating and immensely powerful teenaged necromancer so profoundly damaged by her Lyctoral transformation that her fundamental understanding… is completely shattered.” Tamsyn writes, of own heroine: “She was consumed. She was the kindling for the arson taking place in her heart, her brain dry wadding for the flames, her soul so much incandescent gas. She could not do this. She absolutely and fundamentally could not do this.”
There remains very little research on recovery in post-viral illness because diagnostic delays means most data captures the more severely ill, brains and heart on fire. We have no idea how many viral or bacterial infections turn into protracted illness or if early interventions would change longterm patient trajectories. Post-polio syndrome rates are estimated at 15-20%, there’s a 32-fold increase in Multiple Sclerosis after Epstein Bar Virus infection, but less serious infections can also trigger pathophysiological avalanches or set off autoimmune disease.
Someone told me recently that they prayed I’d never go through this again, and I had to explain that odds are I will go through something like this again, whether triggered by a new virus or neuroimmunological programming. The goal is to be able to survive it. Ava Reid’s writing in the voice of her heroine in A Study in Drowning says “What you think of as recklessness, I think of as survival. Sometimes it’s not very pretty.”
This phase of recovery is a combination of cleaning up after a wild party, coming home from months out of town, digging yourself out of debt, repairing a house after a fire, and recovering from surgery. Every new physical, cognitive, or social feat is a test to see if the scaffolding under my feet will hold — scaffolding that is predominantly made of complex medical interventions to the permanently broken machinery of my body.
If I were writing that etiquette book, there would be a chapter on intervening in financial and administrative neglect (e.g., How to File Last Year’s Taxes), one on restarting exercise beyond physical rehab, one on restarting lapsed group chats, one on writing apology letters, one on tackling the minor medical ailments that fall off the priority list when doctors appointments are life or death.
I do not need anyone’s prayers, but I do need their grace and forgiveness as I relearn how to be a human in the world and not a dying patient in the dark. In I Hope We Choose Love, Kai Cheng Thom writes, “This is why the concept of chosen family is woven so deeply into the fabric of queer community culture….We dream of relationships that stand against the test of time and gay drama, for better or worse, in sickness and in health.”
The calendar smudges this time of year, as it smudges for anyone who is sick long term and out of sync with both blood and chosen family rituals. I don’t remember most pandemic New Years, other than those marked by ER visits and other catastrophes. This year is the first one I have been well enough to be cozy, and not just sick, to re-write the apology letters I owe, pay the bills I let lapse, grieve a little what’s been lost while I tried not to die.
The Impairing Curse is a long-form, serialized experiment in personal essay, science journalism, policy analysis, and poetry. To start at the beginning and read it in order, go to the first essay or read about the aesthetics and labour of illness, the science of salt, and the failures of public health. To support this project, share it online or subscribe. The series is intentionally not behind a paywall, to ensure broad access to patients and timely circulation of information in our evolving public health crisis, but paid subscriptions are welcome.