In honor of Pride month, or because my disease (long covid or ME/CFS) is the mystery plague of this contemporary moment—or maybe because, in news of the spooky and weird, I’ve just started a med that my friend Ron probably had to take—I started listening to an audio recording of the National Theatre’s production of Tony Kushner’s Angels in America: A Gay Fantasia on National Themes today.
I shouldn’t be doing anything right now but lying still under a blindfold rocking out to white noise. I’m in the throes of a mast cell flare, which for me basically means that my immune system is attacking my nervous system. It’s an extremely painful state that can escalate to an inflammatory emergency—but now, four years after the onset of my illness, I have some context for what’s happening, a diagnosis that makes sense, and medications that make the experience manageable.
And I know to stay the fuck down—that activity will make the symptoms much worse. Unfortunately, that’s easier said than done; part of the cruelty of these flares is that they flood my body with stress chemicals that make it almost impossible to chill out, let alone sleep. It’s the tweaky, electrified feeling of taking all the nodoze in the bottle the night before exams. My muscles default to a painful clench. My mind races like the breaks have been cut.
And so I take out my phone and write. Hi. Thanks for reading along with me.
I guess in this analogy I’m Dante
Ron was my cancer buddy. He had been living with HIV since the 1980s, and was already a veteran of the cancer-industrial complex when I started chemotherapy for breast cancer in 2015. Disability activist Stacey Park Milbern created the term crip doula to describe how sick and disabled people who know the ropes initiate newly sick and disabled people into the parallel universe of illness and disability. I used to say that Ron was like my Virgil through the Inferno of cancer treatment.
Ron told me about the the sublingual version of Zofran, which tastes like fruit punch and works so much faster on nausea, and how nice it is to rub lavender oil on your sensitive bald head after a shower, and that I had a right to stand up for my quality of life when it was eroding under the so-called “standard of care.” We commiserated and cracked jokes about the indignities of sickness: the nausea, the pain, the medical dehumanization, the vulnerability. With him, I felt less alone. Ron died from complications from cancer treatment in 2016.
So I am thinking of Ron and listening to Angels in America, which is a lush, hilarious, heartbreaking work of magical realism about people navigating severe, poorly understood illness during the AIDS catastrophe in the 1980s. For those not familiar with this ugly bit of history: the Reagan government deliberately ignored the AIDS epidemic for years due to malicious contempt for the populations most affected, namely gay men and IV drug users, and then used stigma around AIDS to further stigmatize and persecute gay men. More than 100,000 people died, according to the CDC, before treatments began to emerge in the late 1980s.
There is no direct comparison between the AIDS crisis and the current epidemic of post-viral disease. Yet I find myself thinking about lineage—by which I mean, my connection to people who have come before, how I’ve benefited from their work and knowledge, and most of all, the gift of seeing myself as embedded in a longer human story.
Comfort in shared pain
I am not the first person to experience terror when the body glitches in ways for which I have no framework or explanation. I am not the first person whose partner imploded and bailed because front-row seats to serious illness were too terrifying, too overwhelming. Whose doctors didn’t have answers, and whose government was indifferent to a looming public health crisis. Who found solace in community. Or who felt the urgency to organize politically.
In this context, my own pain feels less personal. And I feel less alone. Buddhist teacher Sharon Salzburg talks about a shift between the urgent heat of “my pain” and the cooler stability and solidarity of shared pain—pain that is universal, that is also experienced by others as part of the project of being human. It is a sense of feeling held and nourished by a community of kin, across time and space, who have wrestled with similar experiences. My pain seems like less of an unacceptable emergency, and more like a part of the fabric of life.
Shared experience is electric
In the throes of illness, the solidarity of shared experience is a lifeline. “I see you. I know this to be real.” Shared experience is electric. Recognition feels like the thrill of a circuit closing. Or the loosening of something tightly coiled. I have been there, laid flat on the bathroom floor, terrified to go to the hospital and terrified to stay. I know the feeling of being caught in the endless present of initiatory and psychedelic pain that Sophie Strand so brilliantly describes here. The feeling of relief, of connection, at seeing these experiences articulated, is so powerful.
Illness is isolating on many levels. The culture itself enjoys this rather amazing, willful blindness or amnesia when it comes to illness and death. And yet, as the Buddha observed 6,000 years ago, every single one of us will experience old age, sickness, and death. No matter how isolated we feel in our suffering, we are never actually alone.
What has made you feel connected in times of crisis and isolation? Who are your crip doulas? When has shared experience been a lifeline for you, whether through connecting with others, encountering art or writing, or learning about history? Let me know in the comments section!
A few links and resources
United In Anger: A History of ACT UP : A documentary film by Jim Hubbard.
The Sick Times : Journalism and organizing for the ongoing long covid crisis.
MEAction : “Our movement fights for recognition, education, and research so that, one day, all people with ME and CFS will have support and access to compassionate and effective care.”
MillionsMissing : Raising awareness and advocating for research into ME/CFS.
Complaints and Disorders: The Sexual Politics of Sickness by Barbara Ehenreich and Deirdre English.
On Being Ill by Virginia Woolf.
Sophie Strand on Substack.
Care Work: Dreaming Disability Justice and The Future is Disabled by Leah Piepzna-Samarasinha.
Leah Piepzna-Samarasinha on Substack.
Disability Visibility by Alice Wong, and the Disability Visibility Project.
Crip Kinship: The Disability Justice & Art Activism of Sins Invalid, by Dr. Shayda Kafai.
I needed your post this morning. I’m back in bed whole body throbbing with burning pain. I love Angels in America, both the written play y the mini-series. I’ve seen the play in SF also.
Community y solidarity are essential!!! Sending healing love your way❣️💜💜💜💕💕💕
PAIN as COMMUNITY
This piece is so beautiful, Rachel, and my mirror neurons are firing like effing crazy. I want to whip out my magic wand and take your suffering away (sadly my wand is still in the shop, multiverse supply chain issues, blah, blah blah). But without pain we lose the humanity of it all, the shared deepening of experience, of tolerance. Breathing. Being a Body. Which you've made into a gorgeous fractal. Thank you.
"...shift between the urgent heat of “my pain” and the cooler stability and solidarity of shared pain—pain that is universal, that is also experienced by others as part of the project of being human."
PS: The Angels in America mini-series is so beloved to our family.