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Published On November 20, 2020

FIRST PERSON

100 Days of Loneliness

After 40 days in a coma, one COVID-19 patient faces what he feels is a bigger challenge—the isolation of treatment in a pandemic.

I have no recollection of the 40 days I spent unconscious in the ICU. I know my family sent my caregivers playlists with Pavarotti and the Beach Boys. Those sounds, interspersed with the voices of my family, were supposed to connect me with my pre-comatose life. They were piped to me through earphones—a key factor, I believe, in my mental faculties staying sharp until I awoke. 

When I finally came around, the first thing I realized was that my life would be remarkably different. I had no ability to stand or walk, compounded by massive lung damage I had sustained from the virus. There were dozens of adjustments to make in getting through my day-to-day life. But perhaps the biggest shift—the one not on any list of COVID-19 symptoms—was my emerging into a world of extreme isolation. 

As with many COVID-19 patients, I had been sent to recover in a highly regulated environment, a space governed by quarantine rules and safety restrictions. I did have the occasional visit, but normal conversations with my providers were limited, since many of them were restricted on the time spent with us. As we know now, conversations are one way the virus spreads. Our interactions were, of necessity, mostly transactional—a medication dispensed, blood taken, vital signs checked. 

In my normal “before” life I had been far from a social animal. But as the days wore on, I began to understand the perils of this kind of extreme isolation. My mind occasionally went to dark places, hungry for human contact and especially human faces.

I began to fixate on the masks, which added a dimension of anonymity to every interaction. In my 100 days of hospitalization, I saw the full faces of only three care providers. On two occasions my nurses removed them for a moment, saying they wanted me to recognize them if we ever met in my post-COVID-19 life. The third was a social worker. He understood my pain and showed me his face as a gift. The two of us would sit like that and talk about sports, food, politics—anything other than COVID-19 in the news. 

At last I recognized my own pity party and how my mind was brooding on my circumstances. I began to speak with my doctors and nurses about the bigger problem, what I now refer to as the epidemic of institutionalized loneliness. From my own experience I began to think about how loneliness itself causes harm or, at minimum, prolongs recovery. In conversations, my clinicians agreed that it was a problem in this pandemic, and that loneliness needed to be treated as its own disease, in much the same way that chemotherapy is part of cancer care. 

The topic began to occupy my thoughts. One weekend a resident said, “So you realized you’re lonely. Have you ever thought about how lonely your doctors and nurses are?” 

I hadn’t. I began to learn how my caregivers’ and hospital workers’ lives also had changed. Many had lost friendships as a result of their exposure to COVID-19. Others spent weeks away from their families because of quarantine rules, faced with the financial alternative of giving up this job in a very risky employment market. They said, with some irony, that they missed the intimacy they had with cancer patients. The virus didn’t only eat away at the lungs. It ate away at social bonds.

I’ve now been home for three months. Only last week I walked 2.5 miles and climbed a lighthouse at Woods Hole. But my mind still gravitates to that room and the thousands of new COVID-19 patients around the world who will be in a room like it. 

I made a decision to devote my time to telling these patients that they are not alone. Where I can digitally reach people in isolation, I try to do that. I’ve also spoken with health care administrators about antidotes for loneliness, and how desperately we need them—for patients, for families and for the care providers who too often are lonely while protecting us from this pandemic.