by Jennifer A. Zelnick
I have spent the past year actively trying to convince myself that I am not sick. This is my attempt to try to reconcile feeling fine or mostly fine, with the often-invisible threat of illness—a concept much of the world is grappling with in the age of Covid-19, but which many chronically ill and disabled people have confronted daily for years or their entire lives. It is my attempt to put my own real privilege into conversation with the vulnerability I feel for myself, and the real vulnerability experienced by my interlocutors—deported Cambodian-American refugees.I begin with an acknowledgement of my own positionality: I am a Jewish, cis woman, in a relationship with a man. I am an American citizen. I have an intergenerational emergency financial safety net. I am highly educated. As a PhD candidate at UC Irvine, I have year-round health insurance and a guaranteed paycheck as a TA for nine months out of the year. Despite the real needs for a COLA—a cost of living adjustment for all graduate and undergraduate workers at the University of California—as my colleague Elizabeth Hanna Rubio so poignantly argues (2020), I and my partner will find a way to make ends meet.
In late 2018, while conducting dissertation fieldwork in Phnom Penh, I developed some strange symptoms: my hands and feet would become numb in the air-conditioned office of the Khmer Support Network (KSN)1, one of my primary field sites. An unfamiliar medical complaint in Cambodia’s hot and humid climate, I booked an appointment with my primary care physician in California for March 2019. She diagnosed me with Raynaud’s on the spot, and ordered some blood tests. Raynaud’s in and of itself is typically manageable, and my doctor assured me that I shouldn’t worry. I returned to Cambodia before obtaining the bloodwork results.
Upon landing in Phnom Penh, I learned I tested positive for Anti-nuclear antibodies (ANA)—a common marker used to determine if someone might have an autoimmune disease. The note from my doctor reminded me that a positive ANA itself didn’t necessarily mean I had an autoimmune disease, just that I needed further testing. I panicked. I was newly twenty-nine and my biggest health complaints were asthma and a back injury. I knew from Vickie, an interlocutor with severe rheumatoid arthritis, that her illness was painful and progressively disabling. She often lamented that her physical pain was exacerbated by financial constraints due to her inability to work. Over the three and a half years I have known her, I saw Vickie struggle more and more to navigate Cambodia’s often unforgiving built environment, a series of hazards for physically disabled individuals.Amidst this backdrop, communications with my doctor reassured me that everything was probably fine and that I could continue my life and research plans—remain in Cambodia until August—unless I became acutely sick. I began to oscillate between intense panic over every muscle ache and cold, and coolly assuring myself that I was decidedly not sick, that I couldn’t be sick.
I returned to California as scheduled in August and began to see a rheumatologist and other specialists for what felt like endless tests. My doctors have since classified me as a “suspected” case of limited cutaneous systemic scleroderma (abbreviated to lcSSc or limited scleroderma). Limited scleroderma can range from mild to more severe, and luckily, my symptoms are relatively mild. I am “suspected” to have lcSSc because, although I have a handful of clinical and serological markers of the illness, I lack the most telltale symptom. I am monitored closely for internal organ involvement, take daily medications, and require a minor outpatient procedure for my foot. Still, I try to approach each day convincing myself that I am not sick: after all, I am not immunosuppressed, I do not have organ failure, and my diagnosis may never progress.
Amidst the tests and doctor visits, I continued my research in California, and traveled to Cambodia, as planned, for a month in the early winter.
Then, shortly after I returned from Cambodia, news of a novel coronavirus began to spread. In the early days, given Cambodia’s close physical, sociopolitical, and economic relations with China, I feared for my interlocutors there. News broke of cases in Sihanoukville, the coastal province quickly becoming a Chinese vacation destination, much to the dismay of many Cambodians and European tourists and expatriates. Online, I sifted through racially coded vitriol about the “Wuhan virus” propagated by some in Cambodia who were already angered about the influx of Chinese people, and tried to focus on whether the country would become an epicenter for this new disease. I worried about Cambodia’s health infrastructure—could it adequately support those who became ill? I worried about the social infrastructure to protect those most vulnerable to job loss, food insecurity, and homelessness. I worried about my interlocutors. My research examines the deportation process for Cambodian-American refugees. While these individuals arrive in Cambodia with a wide array of skills and resources, many lack any sort of safety net besides KSN. These individuals are vulnerable under “normal” circumstances, their vulnerability will only increase during a pandemic.
Photo shot from Psar Orussey, one of Phnom Penh’s many local markets. Cyclos, vans, tuk tuks, and motorbikes crowd the road and obscure the sidewalk, hinting at the unforgiving built environment for physically disabled persons.
What will happen to Vickie, who visits her rheumatologist every two months to be monitored and obtain her medications? What will happen to my interlocutors Phil and Space, whose jobs as physical trainers have come to a halt amidst national gym closures? Will their families in the United States be able to remit enough money to them, while they also grapple with constrained finances here? KSN provides assistance to as many individuals as possible, prioritizing those with disabilities and illnesses, or those who do not have jobs or financial support from family in the USA or Cambodia. However, as these numbers will inevitably continue to rise, and KSN’s budget is largely fixed, it stands to reason that these individuals will bear the brunt of this crisis. I receive daily messages from interlocutors there who have lost jobs, or whose families in the United States are no longer able to send them money. Similarly, my interlocutors in California are at high risk, too. Take Visal, who, until Covid-19, was working despite his impending deportation. His job and financial security are now at risk. Worse still, if Visal were to be detained for removal, his health would also be in jeopardy as conditions in prisons and ICE detention facilities are highly conducive to the spread of communicable diseases, and Covid-19 is already ravaging these facilities (Lucas 2020).
My doctors tell me that they’re not concerned about me being at increased risk of Covid-19 because of my autoimmune disease, as I am not on immunosuppressive drugs, but that my asthma does potentially increase my risk for complications. I feel thankful that I have a partner who is able to go to the pharmacy or run other essential errands. I worry for friends and loved ones who are far more at-risk than I, both in terms of health outcomes and socioeconomic repercussions.
Amidst these fears, I see groups of young adults playing soccer in my neighborhood’s shuttered park and feel overcome with rage. How dare they congregate when they could be spreading the virus! When I and others more vulnerable than I can’t even go to the grocery store without fear! How dare they play soccer when I have to postpone a necessary medical procedure! And yet, part of me sympathizes with these strangers, whom I imagine are just trying to hold onto some sense of stasis. I see my interlocutors do this in Cambodia—as they try to keep fledgling businesses afloat despite their inability to do so while maintaining physical distance. I recall my attempts to figure out a way to continue to rock climb after symptoms in my foot made this both painful and medically ill-advised. I clung to the hope that there would be a way to continue my practice—because it helped me convince myself I was not sick. But, I abandoned this, at least temporarily, as costs (both financial and health) proved insurmountable.
Public exercise equipment marked with caution tape and a sign reading “this site remains closed to the public until further notice pursuant to the city of Los Angeles’ Safer at Home directive related to the containment of COVID-19.” The exercise equipment sits in front of a locked fence surrounding a soccer field. Purposely excluded from this photo are the near dozen people playing soccer in the closed field.
As epidemiological models have demonstrated, we are all at risk of Covid-19, and wherever we place ourselves on the spectrum of healthy-unhealthy, abled-disabled, young-old, we must fight against the urge to act as if we are invincible. This urge to cling to whatever we define as normalcy is what keeps the soccer players in the park, it is what keeps many of my interlocutors from staying home from work or closing their small businesses in Cambodia—insistent Covid-19 is under control, it is what kept me clinging to rock climbing. For those who continue to work, doing so amidst a pandemic is directly tied to livelihood, and the fear that the absence of a safety net will mean that even if one doesn’t become ill, the economic consequences of Covid-19 would mean economic demise.In other instances, like the soccer players in the park, or my exercise habits, they are perhaps tied more to maintaining the status quo. While there is perhaps temporary comfort in burying one’s head in the sand, perhaps we are better served asking ourselves why we strive to maintain a façade as it crumbles around us. Perhaps it’s time we stop convincing ourselves that everything is fine.
 All names of individuals and organizations are pseudonyms to protect my interlocutors.
Rubio, Elizabeth Hanna. 2020. “What Do I Sanitize (or Do With My Life) First?: Refusing Continuity as a Grad Student Mother in the Era of the Coronavirus.” In “Pandemic Diaries,” Gabriela Manley, Bryan M. Dougan, and Carole McGranahan, eds., American Ethnologist website, 2 APRIL 2020.