Note From the Daybreak of a Viral Pandemic: Managing Chronic Isolation

Daisy Patton

With a mix of cold dread and exhausting frustration, the first quarantines caused by COVID-19 feel like the return of an unwelcome acquaintance. Like many other disabled folks, I had long developed the unenviable practice of spending months in hiding, lonely and often trapped in a single room. The turbulent feelings that come from habitual isolations are all too familiar, though mostly invisible.

The first aspect of my life Multiple Sclerosis (MS) deprived me of was my phobia of needles, a luxury I did not know was such until I was hospitalized during graduate school in Boston. There, I discovered my veins were resistant to IVs when lying down; eleven blood draws and IV placement attempts followed over the near week of hospitalization. The first night, I experienced an indescribable ache from hearing loud sobs, likely family, as someone died in the room next door. Mercifully that was my only night alone. I was joined by my then-fiancé in the morning, though that memory of death still lingers today.

What MS took next remains almost unbearable: my youthful idolization of the summer. As a child, I could not wait to be outside in the full sun for long hours, tethered as I was to our small neighborhood. Oklahoma summers are notoriously muggy, quite different from my hometown of Los Angeles. It approaches an unforgiving hell for the uninitiated, but one I oddly relished. The first summer after diagnosis in Boston, I could still enjoy the sun on wet grass. The subsequent summer, I found overheating on my medication had disastrous effects and began undergoing the misery that has only increased as the years pile on. A fatigue surfaces that is distorted as laziness until dizziness appears. Five years after diagnosis, I nearly fainted twice on a September residency trip in New Mexico. While I lived in Boulder, CO, whose philosophy towards the heat was merely opening a window, I lacked access to air conditioning. My life followed a dismal pattern of spending days confined in the cramped room we had installed an AC unit, waiting until sundown where cooler nights meant I could venture out.

I have never been a patient person, but I have learned to grudgingly accept the desperation of spending three to six months each year trapped. It has been ten years since diagnosis with various moves to different cities and states in between. I have gradually lost all tolerance to heat—now anything above seventy degrees makes me uncomfortable, over seventy-five in danger. I have to remove myself from social events, work opportunities, and travel, feeling my world get smaller and more suffocating.

My seasonal affective disorder occurs during the summer, where I am disappointed knowing my ability levels will be severely diminished. There is also the apprehension of discovering what else I have lost that reveals itself in the heat. It is, quite frankly, depressing as hell to feel caged inside, knowing I cannot fully celebrate my July birthday or anything else. I kindly remind friends and others of my limitations, but even disability advocate acquaintances have invited me to their outdoor summer party, assuming I would just stay indoors alone, watching them gather happily through kitchen windows.

This past year has been one of great transition, living in three different cities across the country, losing access to AC last summer, and rebuilding my life and friendships in new places. I have been isolated for what seems like ages, especially with preparations for spring exhibitions. Late spring was supposed to be my time to socialize before summer’s approach. Instead, my friends have joined me in sharing the effects of long-term cabin fever. I can now easily slip into this forced solitude, having rehearsed diligently for so many years. But it is stifling to feel the strict confines of social distancing. I recognize in many the same emotions I had buried unnoticed—wild-eyed anxieties, frantically wanting to seek out others but being unable to do so, having to learn how a home, spacious or not, can feel like a punishment.

I feel empathy for those urgently trying to make do with this new normal. MS also cheated me of plans for the future, countless futures. I do not know what condition my body will be in the following year, much less five or ten. Then, there is the morbid joke of choosing which medications’ side effects are most acceptable to prolong disability; weighing death is one of those possibilities. My current medication makes me more susceptible to upper respiratory infection and breast cancer. It destroys B cells, usually necessary for immune systems but in mine commit acts of self-aggression. I have thought about my mortality far before diagnosis, but it feels hard not to be fixated on death when it feels much closer.

I found a lump in my breast that is currently—or rather, was—undergoing regular monitoring. My check-up was canceled when the pandemic broke out. My husband frantically scrubs every surface of grocery deliveries, some brought by dear friends helping to keep me safe.

Now living in western Massachusetts, the day I write this, May 3, 2020, feels like the first day of summer—almost eighty degrees for the high. I had felt a strange removal from myself, perhaps a consequence of coping with such heavy threats from thinking about detachment ends as my body fails me with the arrival of sweltering weather. Having moved to the most rural place I have ever lived, my husband and I have managed cabin fever with daily nature walks. But now with summer’s return, the recognizable worry is compounded with a more total confinement.

There are now foolhardy plans of soft re-openings, of altered interacting as we wait for effective treatments or vaccines for COVID-19. But I, like many vulnerable people, know my seclusion will extend for longer. For those that participated in that great display of love by remaining inside to care for each other, I feel gratitude. But I see the strain and weariness building. The ways this pandemic shines a light on racial and/or economic inequities is horrifying and another essay entirely that would enumerate the ways that being able to stay home is a privilege denied to many. Yet after hearing myriad complaints of how dire this isolation feels, I find myself wanting to ask if they understand this is my reality every year since diagnosis. It seems selfish to want to point this out—imagine how I feel—as people count days and weeks of this. Instead, I have spent this time checking in as much as I can, making myself available to help carry these sorrows together, one more for my metaphorical basket. That basket is already full with the tragedy of so much unnecessary death from a deliberately incompetent, craven federal government siphoning more money to themselves. Lives in this death capitalism, especially those already marginalized by racism and ableism, are expendable in service to a rising stock market and wealth accumulation.

Grief has been a somber companion since my youth. I am deeply accustomed to its expanding boundaries, of terrible mood swings and distress over uncertainty. Whether we recognize it or not, we are almost all existing with this opaque sorrow, one that sees no lifting for the foreseeable future. All we have is the present, one day at a time. Perhaps that is why staying at home feels so overwhelming—to know only the present is to be stuck in a cycle of agonizing monotony and terror.

Connection, whether through phone calls, letters, or video-conferencing, is our one salve against this period. Many disabled friends understand this form of non-physical communication, whose expertise and labor should be sought after and compensated. After all, disabled activists have spent years advocating for multiple avenues of meeting, whether for doctor’s visits, attending conferences, therapy, and more. Beyond emotional connection, numerous people are using their time finding ways to help. Others reach out, striving to refill drained selves of living through this contagion. Nothing brightened my mood better than to be acknowledged during the oppression of summer heat, with friends offering to help with basic tasks that were temporarily impossible or connect in spaces that could accommodate me. To be recognized and embraced during this shared pain is to matter, a gift we can bestow each other as if a renewable resource. Connection and other features of care must become as infectious as this illness and its awful sibling, loneliness.

Two last things, dear reader. The first is a skill I’ve had to learn over years of dealing with MS is asking for help and not feeling guilt or shame; pride is a worthless thing in this situation. The other is self-forgiveness, something I still grapple with. Some days are bad days—you forget words, memories, or discover new abilities vanished due to these periods of isolation. It is easy to become bitter at these losses, but all that does is rob you of the remaining life you possess. No one can perfectly cope with living with a plague because that is impossible. Some days, just surviving is the best you can do, and your best is good enough. A negativity spiral brought on by grief and trauma and fear is even more devastating, which means you must embrace your full self—and others, too. There are individuals who hold hatred, but many others are just struggling to carry this weight alone. Asking for help is admitting vulnerability, the vulnerability of being alive. Sometimes, that is enough.