It's been a year. When all of this started, I had no idea how profoundly it would reshape me and that a year from then everything would be the same only later.
I'm reading Jason Purcell's collection of poems Swollening, a book I immediately purchased once I read that it stood at the intersection of queerness and illness. I like keeping a finger on the pulse of queer Can Lit. It makes me feel connected to the half of me I’m not naturally in touch with. It’s to my 2020s what keeping up with all the new indie rock releases was to my early 2010s: an effort to be part of a conversation. A similar reason to why the Brown diaspora compulsively hate-watches Indian Matchmaking. I’m reading through Purcell’s words, some of them moving right past me, others touching my literal nerves.
Illness is a new intersection for me. That and being bi or maybe pan. My life has slowed to a near halt and yet I feel so goddamn imposter-y when I use terms like "reduced mobility" or "disability". Am I disabled “enough”? Am I disabled or temporarily unable? Do I need to accept this as my new normal? Is it ableist to wait until an indeterminate after? When I filled an application out for a program I wanted in this year, I attached a medical document detailing my conditions, to access support services the institution provides for disabled folks. In doing so I couldn't help but feel like I was potentially taking away from someone who'd need it more. On the outside I present as able but my body carries different stories. A two-hour nap after a bumpy bus ride, a slow couple of days to make up for a night out, flat surfaces to walk on without pain shooting up my flank. Whenever there’s a semblance of progress, I quickly relapse. My nervous system has a mind of its own and it isn’t mine.
In the year since I've been ill, I've learned to shrink and stretch time. Like the month my husband was in India before I joined him. I filled my days out with small tasks. I'd schedule naps and sciatica stretches and grocery runs. My life hinges on these errands. My months lack a narrative thread. I traveled for the first time post-pandemic and went through many cycles of exhaustion and recovery. I've sat down in cafés and read about caste, gender and Kashmir all the while telling myself I'm building a knowledge bank I can surely monetize later on. So I'm making convalescence productive. And that's the thing really, underlying what afflicts me, I'm bogged down by the guilt of not earning my keep in the capitalist machine. Not working has freed me from the apparatus that made me sick in the first place but not without an appendix of shame.
People tend to put words in my mouth, or put feelings into my hands. There's often a concern over my not working that transcends concerns about my health. We met a new couple of friends for Italian food a few weeks after we got back from India. There was a moment of polite banter then we exchanged anecdotes about common cultural touchstones until we veered into an expected and dreaded topic: work.
"And what do you do?" one half of the couple asked after we discussed my husband's job.
"Oh I'm not working right now."
"So you're looking?"
"Not at the moment, no."
There's something unsettling about this bit of conversation because there’s an awkward lull in the space a justification is expected, as if I'm deliberately missing the social cues that would have me elaborating on the why. I don't have kids or a visible disability so there's nothing that speaks for me. I sink my teeth into another slice of pizza and remark on how well spicy salami pairs with artichoke.
Over a year of chronic pain and certain things have faded to the background. There’s no time for FOMO. It's morphed into a sort of PATIMO (painfully aware that I'm missing out) which is harsher but also liberating. There's much less of an if. My body won't allow me anyway so you go ahead. I also don’t have much time to grant my body dysmorphia. What does it matter what I look like when I feel like this? No more body checking, no more sucking my belly in, no more pining for a pre-pandemic figure. Because my body expends so much energy keeping me in as little pain as possible, I've become hyper aware of what drains me. It’s a bit of a disappearing act. I have energy to maintain about 2.5 friendships. I spend hours scrolling TikTok. Sometimes the highlight of my week is a photo I take of carefully placed bok choy on a noodle dish or a pleasant conversation with a waiter. Sometimes it's a dog at a café coming up for cuddles. It's a phone call with a best friend. Pain takes up so much space there's not room for much else. Looking to Purcell’s words:
Pain is what interferes, what cuts up
time
attention
languageso the mind is only half there while the body
throbs its excess presence.
The mind moves towards the minute, the particular,
the boring, all to keep the body in place, to return the world
to a size that can be managed. Pain can be too big.
Sickness is not a metaphor (Swollening, Jason Purcell)
*
On days that the pain is really bad I ask myself, am I just meant to die young? I have already lived many tiny lives throughout space and time and this might just be a shorter episode than formerly anticipated. I go through pictures on my phone every other day. My pleasure centers are very receptive to nostalgia. There's a bunch of photos of cute lunches, carrot cupcakes, oat milk lattes, countless videos of my husband in his own world, pictures of books and colorful things in my life. The gallery tells an incomplete story. There's more guilt to unfold here, as evidence of ailment is sparse. Am I lying to myself? Do I feel as bad as I say I do? How can these two aspects of my life coexist? I've been putting off major life decisions because I lack executive function. Most of my brain space is dedicated to planning the next couple of days, who we'll meet, what we'll eat and how I'll stimulate my pleasure centers. It feels hedonistic and privileged. Stuck between not knowing if I'll ever not feel this way and feeling remorse over this prolonged latency. Still following my dreams but going so slow I can’t tell if I’m moving. Like flying with someone else’s wings. I wonder if there's a space in between where capitalist guilt doesn’t get the best of me. Maybe at a feminist bookstore café in a different corner of the world, talking about the latest Akwaeke Emezi and referring customers to the neighborhood’s vegan ice cream shop? Maybe then I learn to live in “crip time” (a Disability Justice term I recently learned about in Shayda Kafai’s Crip Kinship) and find myself in communities unafraid of slowness. Maybe in that version of my life my body doesn't turn on itself at the thought of work, my mind doesn't eat me alive. What's a year?
So sorry to hear you’re in such constant pain. If you’d like to chat with another slow moving dream follower, I’m here!