Insofar as this project can have an ending, I want to end by telling a story about the stories I've told here.1
At the end of February, Dr. Jiang messages me tersely on MyChart: "Don't leave your apartment if you can help it. It's really bad out here."
I trust her. I cancel conference plans last-minute and am not refunded or reimbursed for plane tickets and hotel rooms. I cancel routine medical appointments. I stop going to Pilates. My pain and fatigue, eagerly climbing, build trellises to support their meteoric rise.
Everyone I know in New York City is sick with something whose edges are ill-defined. People report painful respiration, and I flash to my own post-appendectomy struggles to breathe, as adhesions and medical trauma have permanently transformed my diaphragm into traffic spikes, my lungs the unsuspecting car. I see photographs of refrigerated trucks serving as morgues and mass graves dug on Hart Island, and I flash to photographs of war atrocities in Sri Lanka. Most of the people I know who can't work from home get sick. My students report relatives and friends who are dead, dying, or hospitalized. One young man loses five people in two months: everyone in his family except his father.
I do not cancel my hard-won consultation with one of the few myalgic encephalomyelitis (ME) specialists in the country; at that appointment, I am clinically diagnosed with ME, after blood tests confirm elevated HHV-6 titers (suggesting post-viral reactivation), a high antinuclear antibodies (ANA) titer, and a speckled ANA pattern (suggesting autoimmune disease). I'm told HHV-6 infects nearly everyone as children and establishes life-long latency, like other human herpesviruses such as Epstein-Barr virus or chickenpox. The reactivation of HHV-6 is associated with, among other diseases, ME.
Back in 2007, Dr. Birnbaum recorded chronic fatigue in my medical chart as a component of fibromyalgia, but being diagnosed with ME by a specialist carries more weight.
My doctoral research acquires a new urgency. I worry about contracting COVID-19. I worry about dying. Worse, I worry about getting sicker.
Maybe this was the final push.
The pandemic disrupted my healthcare. Without routine massage therapy, I can no longer deny that I occasionally need a cane for balance and stability. I order canes with bold, funky patterns — purple paisley, tropical parrots, stained glass — to tell myself I'm stylish, not declining. I don't want to think about how it's been 15 years since the initial onset of all my symptoms. I don't want to think about how it's impacted my brain, my heart, my lifespan.
Universities begin mandating in-person classes. Some of my friends return to the classroom, contract the Delta variant, and never recover. Health officials call this post-COVID condition long COVID, the consequence of post-viral reactivation or neuroimmune damage. It begins surfacing in people who had COVID-19 in 2020. It is downplayed by the CDC, which continues to undermine its credibility with misinformation and confused public health messaging.
My friends describe symptoms that parallel ME, with strange new additions like COVID toes, hair and tooth loss, ischemic strokes, heart problems, pulmonary embolisms. Preliminary medical research suggests that COVID-19 is not solely a respiratory virus but a complex cardiovascular, connective tissue, and immune system disease. I amplify information from chronically ill activists and tell everyone I know personally to stop, pace, rest, but they're academics who have habituated overwork, not slowness; even knowing me, even after reading my work, they can't comprehend what being me entails, or accept that their lives might someday resemble mine.
I feel like I'm shouting into the void.
I wish people understood that I'm not afraid of dying. I'm afraid of further deterioration. Of having to cope with more tests, more ambiguous results, more insurance coverage denials, more medical, academic, and social misbelief. More of how I already live when I'm already at capacity.
In Fall 2021, my university insists on in-person classes. I resume commuting to campus. I wear NIOSH-approved N95 respirators while most of the people around me wear surgical masks or nothing at all. Many of my students are sick and wear their masks improperly even when I correct them. Whether I feel sick or not, I take PCR tests every week. I know the importance of having clinically confirmable lab results in your record. All my tests are negative. I restart Pilates with Sara, who I worry about constantly, as her work requires close contact with people, and people are careless, tired of masks and other public health protocols. Protect each other fades into You do you.
By November, the Delta variant is surging, as predicted by the disabled community. We're oracles like Cassandra. I retreat to my apartment. I stop going to Pilates. I cancel my medical appointments. I teach online. I experience mild flu-like symptoms that probably signal post-exertional malaise (PEM), because I'm racing to revise one kandam and have to finish writing two more. I've grown so used to correlating flu-like symptoms to flare-ups and PEM that I doubt I would notice COVID-19 unless the illness was severe.
My online disabled community now consists of old FMS/ME comrades and newly disabled long COVID patients, and while most of them engage in the spirit of mutual care and collaboration, I'm surprised at how many ignore us or actively drown our voices out. I am surprised by their surprise, when many of them chose to socialize in ways that risked their health. I just didn't think it would happen to me is a blithe refrain on my social media feeds. I regret my choices. I didn't know COVID was this bad.
I think of 2020. The excess dead in the refrigerated trucks.
I am not gracious. I went 13 years without a clinical diagnosis, 13 years without medical treatment. When I was diagnosed with ME, the doctor that Dr. Zagara had referred me to — one of only a dozen expensive physicians specializing in ME/CFS — told me that if I had been diagnosed within three years of symptom onset, I might have had success with antivirals like Valtrex. Still, I'm one of the lucky ones. Most ME patients, especially nonwhite women, never receive a clinical diagnosis.
I want to say to these new surprised denizens of the vast kingdom of the sick, particularly those who stopped wearing masks, who hung out at restaurants and bars, who traveled extensively, I told you so. I want to say listen to disabled people. I learn to bite my tongue as all these long COVID patients I know — so eager to not be me — don't pace, don't rest, continue to travel, wear ill-fitting masks, worsen their health, and act surprised all over again.
Corpses are a visible, material fact. Chronic illnesses like FMS and ME are corporeally non-apparent: if we don't look too well, we're so unwell we can't get out of bed; we disappear entirely from public view.
I write this dissertation against the backdrop of pandemic policies designed to disappear us.
I accept that I am, in fact, sicker, and that writing this dissertation was a significant contributing factor.
I finish drafting this dissertation in March and successfully defend it in May. During my defense, my committee members make suggestions for revision with the caveat that I don't need to revise it, and certainly not now given how much work I've already done. What they don't seem to understand is how afraid I am of the impending PEM, of whether or not it will leave me too sick to work again. Revision doesn't feel like a choice.
In order to graduate, I have to reformat this webtext into a "shadow dissertation" PDF that aligns with the graduate school's specifications. It takes two tiring months. I keep revising the webtext, my "real" dissertation, until my official graduation date.
I feel the crash coming.
I'm offered the chance to walk in the graduation ceremony in May. It's a kind offer but strikingly at odds with the measures I take to preserve my health. I still rarely leave the apartment. I haven't done bodywork with Sara since November 2021. Anji continues to work from home to protect me, does the laundry, picks up my medication. Without routine massage therapy, pain hinders my movement. Some days, I rely on my cane. I don't know if I can sit for the duration of a graduation ceremony. I don't know if it's safe for me to be in a crowd of students, even masked.
I reluctantly say no. It hurts. I want to be hooded by Jack. I want some kind of closure.
I find a local tattoo parlor that still observes COVID-19 protocols, and I get a full-color tattoo of Ravana on my left leg. I want an image of mythic viththiyaasam — anomaly, not abnormality — to be a pillar upon which I stand (Canagarajah, 2022).
Between May (my defense date) and October (my degree conferral), ME is thrust into the spotlight as a precursor and parallel to long COVID. "Many cases of long COVID are effectively ME/CFS by another name" (Yong, 2022, para. 3), Yong writes in The Atlantic, the day before I start drafting this epilogue. According to the CDC, 1 in 5 COVID-19 survivors will develop a post-COVID condition. Neither FMS nor ME feature in standard medical training, and they are invisible to standard medical diagnostic techniques. As ME/CFS specialists shift their attention to educating their colleagues in the diagnosis and treatment of long COVID and complex, dynamic disabilities like ME, FMS, POTS, and so on, ME/CFS patients lose access to the best care available to them (paras. 6-8, 14-15).
I appreciate that post-viral conditions are now more likely to be believed, but the cost is painful. Mostly, I feel grateful for my diagnoses, for being stable enough at the moment that I only require routine check-ups and prescription renewals. I feel sacrificed on the altar of pre-pandemic normalcy by nondisabled people who called themselves my allies and my friends.
I purposely excluded COVID-19 and long COVID from this dissertation because it exceeded the scope of my study, but that doesn't mean it didn't materially affect me. Writing and computer use became more painful without massage therapy. I was plagued by increased brain fog while I conducted my research, struggling to comprehend the words, let alone the overall arguments. My painsomnia worsened. I talked to my therapist about pain-induced suicidal ideation. I worried that PEM would prevent me from finishing my degree.
Now, after 11 long, sick, overworked years, I stand joyously on the brink of degree conferral, and society openly declares that the pandemic is over. People repeatedly contract and spread COVID-19, contract post-COVID conditions, are hospitalized, and/or die. Sometimes, particularly when I wonder how much longer I'll live or be able to write, I'm not sure what it was all for, but in some ways, at least, it was for this moment.
I don't know how to end this, but I do know that my pain and these stories are ongoing. I know that we can facilitate community for each other, protect and care for each other, dream of disability justice, and work toward disabled futurity.
In a dissertation like this, the most I can do is refuse the finality of a last line.
1 At my defense, my committee members agree that I should write an epilogue to account for the elephant in the room: the COVID-19 pandemic that began in 2020, while I was writing this project. ↩(–133. Everything Important Is Left Unsaid)