Long ago I learned a powerful lesson from Audre Lorde. “We learn to work when we are tired,” she wrote, “so we can learn to work when we are afraid.”
I can do both. I’ve even learnt a thing or two about working when I am depressed. Being fearless is not my challenge.
Until it hurts.
What I have been struggling to learn this past month – and still looking to the iconic cancer survivor and others for lessons for – is how to work while in pain. I don’t have any good ones so far. But I am equally haunted by Lorde’s admonition that “the pain not be wasted,” and “to give it voice, to share it for use.”
Instead of being preoccupied over the past six weeks by my vulnerability (as a senior undergoing cancer treatment) to infection with the novel coronavirus, it’s a period when I’ve entered a new phase of my illness where what has overwhelmed any such anxiety is the daily reality of pain.
It was a month of unrelenting, writhing, insomniac bellyaches last year that led to the scoping and scanning that resulted in my cancer diagnosis. Yet, some eight months into treatment, I still feel unprepared by anyone and anything for pain.
Somehow after surgery it the pain subsided and, with chemotherapy was replaced, sardonically, by a creeping neuropathy in my soles and fingertips.
But now that my first course of chemo is over, it’s come back spectacularly, making me the centre of fanning attention at a Couva wake last month where I took to trembling and cold sweat after a plate.
Every time I eat, my stomach cramps. Every time I avoid eating, it lances. Every night I try to sleep, I writhe and bang the bed. I spend the foreday hours pacing until sunlight allows me, exhausted, to nod off.
My post-surgical care team was remarkably attentive to pain, taking a multi-modal approach to its treatment with a combination of intravenous and oral narcotics, topicals and NSAIDs, and a vigilance about dependency. My oncology team’s response to pain has differed remarkably. It’s been especially frustrating because it feels like the sort of palliative care I’d associate with having given up on my survival. They gave me a bottle of 50 tramadol. When I still complained, I got 60 oxy.
When first diagnosed last year, I rewatched the 1980s Bette Midler film Beaches. I remembered it distinctly for one of the friends I’d seen it with, at the height of the HIV epidemic, who’d made us all a spectacle by snivelling and bellowing into the echo of the theatre way past the end of the credits. But somehow I misremembered the film itself, winding back and forth searching for a signature scene from what was in fact another illness-and-death film of the same era. The one in Terms of Endearment where Shirley MacLaine performs at the nurse’s station to get them to administer her daughter’s IV pain meds.
I so wanted someone to play MacLaine’s role for me this week.
No one did, but thanks to my own efforts, I accumulated: three prescription narcotics; after $2,000 a place in a 60-day queue for medical marijuana; two kinds of recreational products; and an acupuncture appointment.
Today as I wrote, I began to feel more agency – even as I learn to predict the rhythms of the pain and my own powerlessness over them. How to pace for best effect. When to smoke. And when to double dose.
I’ve just had my first night of what feels like sleep.
And my first accident. Misdosing myself with an oil whose power I’d discounted on first uses, I ended up with a persistently unpleasant high that took hours to dissipate, giving myself another pain to manage and testing my best lessons about pacing. I was going to miss the column’s deadline, and miraculously managed to e-mail so through the visible fog.
It’s too early to tell if life will return to anything near normal tomorrow.
I will keep reading. But pain is still a deeply humbling, disabling lesson.