My friend asks me how I’m doing. They really care. They really want to know. So I try to tell them: Pain. Doom. Shame. Helplessness. All input horror. All output horror. Me, a vessel that should never have been made. etc. etc. and I do my best to leave the silence that follows as long as I can. And still, an irresistible force makes me look up and say something like: “but don’t you worry, it’s not so bad”. The urge to tell a neat story, to connect, betrays the reality of illness.
I started writing here as a way to make sense of a chaotic time. Long Covid destroyed my life and the parallels between the kind of waiting I was doing to recover and the kinds we’re all doing on the world seemed interesting enough to write about. This poem offered inspiration:
Things to Do in the Belly of the Whale
- Dan Albergotti
Measure the walls. Count the ribs. Notch the long days.
Look up for blue sky through the spout. Make small fires
with the broken hulls of fishing boats. Practice smoke signals.
Call old friends, and listen for echoes of distant voices.
Organize your calendar. Dream of the beach. Look each way
for the dim glow of light. Work on your reports. Review
each of your life’s ten million choices. Endure moments
of self-loathing. Find the evidence of those before you.
Destroy it. Try to be very quiet, and listen for the sound
of gears and moving water. Listen for the sound of your heart.
Be thankful that you are here, swallowed with all hope,
where you can rest and wait. Be nostalgic. Think of all
the things you did and could have done. Remember
treading water in the center of the still night sea, your toes
pointing again and again down, down into the black depths.
In the original whale tale, Jonah was forced into a ritual of repentance for three days. He’d forgotten his respect for the forces beyond his control, and this was how he’d rediscover it. To me, this poem takes that (potentially humiliating and confusing) experience and suggests how, by attending to the details of life, one can make the seemingly unbearable passages -be they cetaceous embowlement or otherwise- more bearable. Despite life rendering you small, sad and lonely, it’s still worth trying to get a handle on things, it’s still worth trying to figure out what to do next.
And with all this, I’ve still not really written about illness at all. Why? Because the honest story of the last three years is not very comfortable. It’s random periods of recovery and random periods of relapse. Days lost to bed and telly. Other days stressfully tentatively feeling my way back into the world. Other days urgently using some unexplained energy in case it never returns.
The cruel predicament of an illness like this is that while you’re alone at sea during the worst storm of your life, and, more than ever before, you need your maps legible and your compass true, the rain and the electromagnetism of the riled-up heavens leave you helpless, clawing about in the dark. If you’re lucky you’ll get yourself out of it by sheer chance. If you’re not lucky, you won’t. What you want has little to do with it.
In the worst of it there is no writing, no words, no possibility of a story however chaotic. “Physical pain does not simply resist language but actively destroys it,” writes Elaine Scarry in The Body in Pain.* In the best times, I willingly forget what I’ve just been through. (I do not blame friends and family whose interest has moved on from this illness, mine has too.) These peaceful waters breed guilt. I feel like I did when I didn’t write to my friend in prison. I am abandoning a past self and an (inevitable) future self to incoherence.
More and more of us are having to grapple with this stuff. Rates of people with autoimmune disorders (things like Multiple Sclerosis, Crohn's Disease and Arthritis characterised by an overreactive immune system) have doubled since the 90s. On the face of it, 4 million people in the UK have an autoimmune disease. But including estimates of unreported cases, this rises to 6 million. And including those suffering with Long Covid (of which autoimmunity is almost certainly a factor), that’s 8 million. This is nearly the entire population of greater London. Meghan O’Rourke, author of a brilliant overview of this epidemic, says “if every age has its representative signature disease, I contend that this type of chronic illness is ours.”
We have some clues about what’s causing it but not many. The book Inflamed by Rupa Marya and Raj Patel looks at the social causes of chronic inflammation (the immune response most common in autoimmune disorders). They describe how exposure to high levels of stress, poor quality food and over a hundred thousand new chemicals made by humans in the last century, is all unequally distributed along various axes of oppression. Women, for example, comprise approximately 80% of people with autoimmune disorders. Learning this helped me start to put this jarring experience into context. And when I found Ajay Singh Chaudhary’s new book, The Exhausted of The Earth, I thought I had it all figured out.
The book enters the long-running leftist wrangling (which you may or may not care about) over which group of people is the ‘revolutionary subject’. Some used to say industrial workers, then some said peasants. Today it’s more a problem of who’s who between categories like the ‘precariat’, a term that includes Uber Eats drivers in London and garment workers in Turkey, the ‘Global South’, the ‘most marginalised’, or the ‘multitudes’. Chaudhary says it’s the exhausted. You can imagine my excitement.
The experience that, however divergent between contexts and severities, unites the victims of capitalism the world over is being bone tired? Whether you are facing burnout in an anglophone metropole or physically depleted in a lithium mine in Argentina, Chaudhary says you share exhaustion at the hands of the ‘extractive circuit’. And, crucially, it’ll be your alliance that can finally end it.
When I try explain this to my anthropology professor friend (a billion times smarter and more experienced than me) she laughs, as if this is another utterly doomed effort to wrangle order out of chaos and shakes her head. I laugh too, and at the same time I admire Chaudhary’s boldness, his attempt to make sense of the world as it is today, and to update our political categories.
No amount of theory or contextualising can heal the shattering of identity that follows a major illness though. “To become chronically ill is not only to have a disease that you have to manage, but to have a new story about yourself, a story that (…) is deeply unsatisfying, full of fits and starts, anger, resentment, chasms of unruly need,” says Meghan O'Rourke. And while it’s helpful to glimpse where you slot into the bigger story, it’s no good trying to paper over the void with it. The psychoanalyst Christina Middlebrook tells this story of how, when their parents edited out the evil characters and frightening endings from their bedtime stories, children would experience nightmares far worse than when they left them in.
One way to look at it is that chaos is the essential precursor for any kind of formation. It’s not an end, but a necessary moment in a process. As we know, every cell of the caterpillar fully dissolves into wild, plasmic dis-order before it reconstitutes itself. As does -in a grander sense- the moth itself when it eventually dies. After five weeks of radiation treatment for cancer, Reynolds Price claims the best thing anyone could have done for him “would have been to look me square in the eye and say this clearly, ‘Reynolds Price is dead. Who will you be now? Who can you be and how can you get there, double-time?”**
“Your chance of rescue from any despair lies, if it lies anywhere, in your eventual decision to abandon the deathwatch by the corpse of your old self and to search out a new inhabitable body.”
*I found this in Meghan O’Rourke’s The Invisible Kingdom.
** This quote and the Christina Middlebrook story come from Kathlyn Conway’s overlooked gem Beyond Words: Illness and the Limits of Expression.
How can so much exhaustion lead to such piercing light? Thank you Greg, as always.
Also, have you read Gabor Mate on auto-immune? Mostly addressed to women but you’d recognise his diagnosis and maybe find some guidance. Sorry if you’ve already been there and moved past him.. ♥️
Didn't realise you were so ill, Greg, sending lots of love - really enjoy reading your blogs, always like a big breath of fresh air. Thank you - looking forward to catching up some day soon! S x