JULY 17, 2020
Featured and banner images by Jason Frank Rothenberg.
THE DAY I READ about filmmaker Jennifer Brea’s remission from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), I was evaluated for participation in a clinical trial. A German pharmaceutical company was studying the effectiveness of a new drug in treating Complex Regional Pain Syndrome (CRPS), a rare neurological disorder that often arises in response to trauma to the extremities, such as the hands and feet, and makes sufferers feel as though they are burning or freezing from the inside out. It is considered the most painful chronic condition known to medicine, has no approved treatment, and, usually, delivers a prognosis of increasing debility.
I have had CRPS since 2017; the inciting “trauma” was the third in a series of surgeries to repair the labrum around my left hip, which has been falling apart for years due to an underlying condition, the genetic connective tissue disorder known as Ehlers-Danlos Syndrome (EDS) Type III. The clinical trial was, I believed, my best hope for relief from the ardors of a pain that, while not indescribable, often challenges my abilities as a writer — an anvil dropped on the foot that crushes it to powder. Railway spikes driven through my heel. Though I had been working hard to accept my new reality and come to terms with the limitations of my body, which at that moment often included a wheelchair and long bouts of housebound time, the promise of a clinical study had ignited a tiny flame of hope somewhere behind my solar plexus.
In a post on Medium.com dated May 20, 2019, “Health update #3: My ME is in remission,” Brea talked about how she began her journey with dreams of being cured, dreams that, eventually, she relinquished. “It wasn’t that I gave up hope,” she wrote. “Rather, I knew I had to move on from something that might never happen and learn how to live the life that I had.”
And yet, she reported, after three grueling surgeries, her ME was in remission. With a complicated support scaffolding of screws and rods implanted to fuse her cervical spine and correct increased mobility at the craniocervical and atlantoaxial junctions (the joint between the spine and skull, as well as upper neck), Brea could walk and do water aerobics and lift weights.
Brea knew the news that many of her worst symptoms had vanished completely would be difficult for some people to hear, particularly those who find the challenge to “live the life they have” an endless struggle. “While I know that remission stories can bring hope, they can also be painful,” Brea wrote on the website of #MEAction, an ME advocacy group she co-founded. She offered to support to those who might respond to her disclosure with grief.
Remission is a difficult topic for those in the world of chronic illness, pain, and disability. It is the thing we are repeatedly told to implicitly work for, a fantasy of the way “I used to be” that motivates one to try to get better — You have to want it, the doctors tell us. But, at the same time, we are asked to practice the radical acceptance of the body preached in popular mindfulness-based approaches to health. Remission is also, for some of us, a feature of our diseases themselves. Many conditions, especially autoimmune diseases that disproportionately affect women, have relapsing-remitting cycles. This spiral of relative wellness and sickness is one of the most strenuous emotional challenges of living with chronic illness. Social media — and its generous users, like Brea — now makes it possible for the chronically ill to come together and share their experiences and information. But it can also mean confronting the fact that some people will get better for reasons that are as poorly understood as the diseases they face, while others will get worse due to factors just as obscure. We meet one another in the out-of-sync timing of our very individual illnesses.
In my journal that day, having just lived through another unpleasant interaction with the medical system, I wrote about how I felt a connection to Brea even though we had never met. “I am happy for Jennifer,” my journal says, “And I am so sad for myself.” At that moment, I was reeling from the news that I might not be allowed to participate in the trial due to the combination of medications I was taking, a combination that had kept me relatively stable (i.e., not getting rapidly worse) for the previous six months. Given that this was a year-long double-blind study in which I would not know if I got the drug or the placebo for 12 months, I was going to have to choose between potentially returning to a world of unmanageable pain for a placebo in the study and letting go of what might have been my one chance at permanent improvement. Some people were seeing dramatic improvements in their CRPS symptoms. Should I risk it all for a remission I knew was almost a statistical impossibility?
I decided I would, the hope of remission was still alive, and stopped taking one of the medications. A week later, the pharmaceutical company canceled the trial completely.
Some readers will be familiar with Jennifer Brea’s eight-year struggle with ME and her spiraling ill-health: extreme pain, neurological disturbance, deconditioning, the loss of a promising career as a scholar, and the toll on her marriage. Recounted in her 2017 feature-length documentary, Unrest, as well as a TED Talk that preceded it in 2016, “What happens when you have a disease doctors can’t diagnose?”, Brea’s story has shed light not only on the lack of diagnosis, treatment, and research on ME, but also for many so-called rare conditions that overwhelmingly impact women. Unrest won a special jury prize at Sundance and was shortlisted for an Academy Award, and clinicians, nurses, and social workers can earn continuing education credits in the United States by screening the film. It has been viewed by policy-makers on Capitol Hill, and #MillionsMissing protests, commemorating all those lost or housebound by ME, grows annually.
I watched the film at one of my lowest periods of ill-health and pain. I shared Brea’s anger at the medical system and its thoughtless misogyny; I shared her grief at the losses that stack up, one on top of another, as the years pass by with little relief. My mother, who watched the film with me, repeatedly asked, “Are you sure you want to do this?” as I sobbed through long segments. I did. I was glad Brea was telling our story. I felt seen for the first time since my diagnosis. Of course our experiences of illness and as women are necessarily different — Brea’s encounter with the medical system as a biracial woman was undoubtedly inflected by deep histories of anti-Blackness that mine was not — but the film invited the kind of identification that can allow both difference and similitude. An out-of-sync proximity.
In some ways, Unrest looks and sounds like a fairly traditional documentary. Sharp, realist camera work, narrative-driven voice-over, social history, and expert interviews paint a picture of one woman’s struggle against a medical system heavily weighed against her. The first-person focus on Brea and her husband, Princeton professor Omar Wasow, personalizes the challenges of diagnosing and treating ME. There are, however, some significant departures from documentary film conventions. When Brea and Wasow began filming, it was not with the intention of making a feature-length documentary; rather, they were recording her symptoms to show disbelieving doctors during appointments. It is some of this unintentional early footage — particularly of a sequence showing Brea exerting Herculean effort to climb a flight of stairs — that provides the film’s most raw and effective moments. The film also makes unique use of internet-based communications technology, which allows Brea to track the stories of several other ME sufferers in locations across the United States and Europe without ever leaving bed. Finally, there are moments of reverie that give viewers a sense of Brea’s interior life: periodic shots of tropical fish swimming in a saturated blue sea hinting at her hope for freedom and release, for a buoyed, purposeful embodiment.
As a writer and a feminist scholar, I usually cope with things by pouring my thoughts and feelings onto the page. After watching Unrest, I wrote a feature article for Film Quarterly that situated the film both within a scant filmography reflecting the lives of the sick and suffering on screen (currently available for free here). There is a more robust literary field of women writing about illness, from Virginia Woolf’s “On Being Ill” (1926) to Audre Lorde’s incomparable work The Cancer Journals (1980), and Brea’s work belongs in that genealogy of feminist engagement with the unwell body and the misogynistic medical system that doubts women’s accounts of their own corporeal reality.
I have yet to discover a single film that grapples with the alterations that mark so many of our lives, but even within this well-established literary field of women’s writing on illness, there is little work on remission. One notable exception, an essayist who has trained her characteristic deadpan gaze on the turmoil of relapsing-relenting disease, is Joan Didion. Diagnosed with multiple sclerosis (MS) in the late 1960s, Didion has written little about her disease over the years. Her essay “After the Diagnosis,” however, speaks precisely to the dilemmas faced by those with chronic illness, which is not only to accept that the future is largely unknown — How disabled will I become? — but also the way that the unknown becomes a mode of being. “The primary task,” Didion says of her adjustment to her diagnosis, “was learning to live with day to day uncertainty.” Her words echo those of Nancy Mairs, who also had MS and wrote about it with unapologetic honesty and wry wit. In a short story called “Shape” in her essay collection Carnal Acts (1990), the protagonist, Pamela, explains that “the part of having multiple sclerosis I find hardest to deal with, the unpredictability with which the symptoms come and go. I just get used to living one way when I shift to another.”
One story we do know well from the extant filmography is the story of remission in which someone makes a triumphant recovery. In fact, this narrative has so suffused our thinking about illness and the body that the cultural narrative around breast cancer, for instance, demands that women “fight” and “beat” cancer, sometimes over and over again. Such stories rarely remind us of this latter fact, however; that even remission from cancer is often a temporary state, and that most survivors live with ongoing forms of resultant trauma from their cancer treatment that wax and wane. The body resists our efforts to fix it in any permanent condition. Sources of anxiety abound.
In September 2019, the unthinkable happened. The third in a series of infusion treatments I was undergoing for CRPS symptoms had the intended effect and I found myself, for the first time since 2010, inexplicably, blissfully, in remission from chronic pain. My foot no longer throbbed for attention from the first moment I opened my eyes in the morning. I had more energy than in ages. I made plans for the future beyond anything I had thought possible in the preceding eight years.
I was feeling so good that, about two weeks after the treatment, I accompanied my nine-year-old son on a scooter ride and fell, breaking the scaphoid bone in my wrist — I still had an underlying genetic disorder making me vulnerable to injury, after all. I didn’t sleep for three days, imagining that the CRPS would return, now spread to my hand and arm. I was terrified that I had sacrificed my one chance at that thing that I hadn’t dared hope for. I told myself this was what hope got me: it was hubris. I had gone too far and this was my punishment.
In addition to the primal fear of increased pain was a profound disappointment — not just that the pain might return, but because it turned out I hadn’t accepted my body’s limitations at all. I was so happy in those early weeks of remission, ecstatic to be reunited with some version of my life before CRPS. I realized that my ambitions, which I thought I had pruned to match the possible shape of my life, would grow wild at the slightest hint that they might have space. I did not love my body just as it was — in fact, I despised it. And just as upsetting, I got a view into what I was missing and, therefore, what I had lost. Brea wrote about this in her 2019 remission announcement too:
[The experience of debility due to ME] has changed me forever, in good ways and in hard ways. Now that I finally have the space and health to truly feel what any normal human might feel about the last eight years, I sometimes wish I didn’t. The grief and trauma over what this illness has destroyed has come rushing in […] the meaning of the time that we will never get back.
That autumn, I lived each day anticipating the beginning of the end of my hard-earned respite; meanwhile, along with colleagues at UC Santa Cruz, where I am a professor, I received some funding to plan events and bring in speakers on creativity and the body. “I really want to bring Jennifer Brea,” I told them. “She might be able to come now because she is in remission. I want to talk to her about this. I want to have a conversation with Jennifer about how to think about remission.”
Brea generously accepted our invitation to come to visit Santa Cruz for a public screening of Unrest and a post-film discussion with the audience and me. We advertised far and wide to the community and booked a theater in downtown Santa Cruz. Dozens of people from across the city, including many ME patients and their caregivers who had been inspired by the film, registered for the free viewing. Brea, the other organizers, and I exchanged emails, all excited about the event.
By February, the date of the screening, my remission was coming to an end. The accident hadn’t proven as catastrophic as I’d feared, but the old pain was creeping back in. I knew, for instance, that to stand on my feet at the event I’d have to use the forearm crutches that had sat, gathering dust, for six months. I was disappointed but told myself that if I had been well once before, I could reach wellness again.
A couple of days before her visit, the other organizers and I received an email from Brea. It was hard to write, she said, and she had been putting it off. But she needed to tell us that she would not be able to travel. Feeling so good and confident in her remission, Brea had attended a pilates class the previous week. Something had tweaked, possibly in her neck, and she was having some neurological symptoms that needed to be checked out. She couldn’t travel.
I was crushed — not just because our event would not go as planned and I wouldn’t get to talk to Jennifer Brea about remission, a small dream I had nurtured since that awful day of the clinical trial. I stumbled around under the weight of this news because I knew it, literally in my bones, knew what happens that makes you have to cancel at the last minute. Because I could imagine exactly what she might be feeling. That grief — heavy, anxious, and utterly unique — was so much to bear. How would she — would we — manage it again?
I will not end this essay with a call to recognize one’s limitations and learn to love one’s body “as it is,” or to surrender to the helix of relapsing-remitting disease with humility. While Jennifer Brea — who, as I understand it, is now okay and still on the road to recovery — teaches hope, and while I am still tending my own hope of longer and more frequent remissions, I respect her in part because she shares my disdain for the proselytizing of those who have reached remission and, even worse, the “wellness” industry. As Brea writes: “I did not get better by thinking positively or drinking green juice (even though I’m sure both are good for almost everybody). I found the specific cause of my symptoms, backed by both subjective and objective measurement. I then had three fairly long and complex neurosurgeries to address this cause.” It turns out that as much as I want to live a life within realistic limits, I would rather not have CRPS; I would rather not live in extreme chronic pain. I don’t imagine that will ever change, and I do not believe that either green juice or an attitude adjustment will bring that about. (Better science might.)
Rather, I want to end with a call to solidarity that moves beyond oneself and the limitations of one’s own body, an out-of-sync solidarity through which we can celebrate and grieve collectively, while centering and naming the differences among us that mean we do not all encounter the medical system in the same way. In her post “Health Update #4: Recovery is a %*#*&$@!,” dated February 23, 2019, Brea hit on the real problem with talking about remission. “Recovery stories, which are inevitably stories of individuals,” she writes, “distract from the most important message [of Unrest]: the challenges we face are systemic” (emphasis added). Given that we are learning that COVID-19 can cause lasting damage to organs, such as lung fibrosis, it is likely that the ranks of the chronically ill — including those of us living in cycles of remission and recurrence — will grow as this virus ravages communities across the globe. Further, we know that COVID-19 is infecting and killing Black, Indigenous, and Latinx communities in the United States at higher rates than other groups. Some people’s pain counts, while others’ does not — recent studies have reaffirmed the racist minimization and rationalization of the pain of African American patients in emergency rooms, for instance, and the denial of Black Americans’ right to breathe — to life — is reiterated with deadly regularity in our daily newsfeeds. COVID-19 is now added to police brutality and murder within what scholar Christina Sharpe has called “the archives of breathlessness.” The better science we so desperately need cannot emerge without profound changes to medical institutions and the doctors within them, as well as the broader sociopolitical context in which these are located.
Since her remission, Jennifer Brea has promised to keep fighting for all those with understudied and underdiagnosed diseases, to help fight health inequities of all kinds, with a commitment that I find galvanizing. “Vulnerability” has become a topic of news reporting and Zoom chatting. For those readers who are sick like me, we are finally being asked the question we have craved: how, in fact, do you get through this? But we must also ask how vulnerability is compounded by racism, sexism, classism, and all other systems of oppression, so that everyone has work to do. For those who are able-bodied, at least for the time being, there is a master class in ferocious fragility being offered out there by the chronically ill and overlooked in our communities. You might want to join.
Item one on the syllabus: Jennifer Brea’s film Unrest and its many ripples.