Things Past

I've always been proud of my ability to move forward. But Long COVID has me looking to my past instead of my future

I wrote about Proust once before. It was over a year ago, in February 2024, and I must have been midway through book 2 of Proust’s 7-volume epic In Search of Lost Time, also translated as Remembrance of Things Past. Now, I’m nearing the end of Volume 7, the last in the series. The final volumes have been a particular struggle to get through, as my health declined precipitously since the summer, leaving me homebound and mostly bedbound. I lost days and weeks to severe migraines, trying to relax beneath a silk eye mask beneath an icy cold cap direct from the freezer.

Eventually, I swallowed my pride and began listening to books on tape, something I discussed in this essay about learning to accept my need for mobility and accessibility aids. But by this time, my relationship with my gorgeous Penguin Classics Deluxe Edition novels was personal and emotional; I was fixated on finishing them the old-fashioned way. Slowly and steadily, I crawled through books five and six. I knew that, like me, Proust had been chronically ill, and I knew that, like me, he had been getting sicker as time went on.

I joked that reading the books while getting sicker, knowing that Proust was writing the semi-autobiographical books while getting sicker, made me feel like I was living in some warped Charlie Kaufman screenplay.

I had always heard that Proust suffered from asthma, and this is the diagnosis he often mentions in the books. And certainly, asthma before inhalers and modern pharmaceuticals was a serious enough ailment. But I also noted that, at times, his description of his illness matched closely with my own and others’ experience of ME/CFS. He seems to suffer from long periods of being homebound or bedbound, and his condition seems to relapse and remit. At times, he disappears from his own books for a matter of months or even years, noting that he has gone away to a sanitorium but failing to detail what happens there.

When I googled his medical background, another diagnosis came up: Vascular EDS. The ScienceDirect paper about Proust’s possible vEDS contends that the “diagnostic errors” made in the case of Proust are still common in medicine today. A fascinating analysis, and the diagnosis itself makes an argument in favor of possible ME. EDS, which I also have, is a connective tissue disorder that makes one much more prone to developing ME after a viral infection. I speculate that Proust may indeed have had ME, in addition to asthma and vEDS.

Whichever specific chronic illnesses Proust suffered from, it’s clear that he was, in fact, sick. The way the ScienceDirect paper frames the “conventional wisdom” argument for Proust’s hypochondria is revealing and, I believe, critical:

No one who complained of ill health at such length and in such detail could be genuinely ill and still manage an output of three million published words in a career begun relatively late in life.

This argument is not really an argument at all, but an insight into an abled medical system that fundamentally fails to understand chronic illness. Chronically ill people can experience major fluctuations in day-to-day capabilities, their pain may worsen and improve, their capabilities may exist on a spectrum, and an inability to walk, move, or think clearly one day does not preclude the ability to write a masterpiece on another day. Such a statement could truly only have been made by one who misunderstands chronic illness entirely.

Proust was born in 1871 and began writing In Search of Lost Time in 1909. He was 38 years old. I, by pure cosmic coincidence, am also 38 years old this year. (Paging Charlie Kaufman.) What I find so relatable about Proust's experience of beginning to write these books at this age is not (I repeat, not) that I think I’m a super-genius literary icon set to begin writing a historic series of future classic novels. It’s that I, too, as I’ve gotten sicker, have begun to withdraw from the social life that once animated me, and to spend my time thinking, writing, and reminiscing about a past that often feels more real to me than my present or future.

I wonder if this experience- of turning inward, of looking backward- at such a young and typically vital age, an age when most people are in the prime of life- is a state particular to those of us suffering from severe chronic illness.

I remember having a particular kind of anxiety while I was attending college. It was a strong, recurrent, overwhelming anxiety that I thought about often. At the time, adults often informed me that college had been “the best time of their lives.” And I was, to be sure, having a wonderful time at college. But this little tidbit of information from well-meaning adults gave me existential angst. I hated hearing it. “College was the best time of your lives?” I’d wonder, disbelievingly, “So it’s all downhill from here?”

I attended Kenyon College, a private school in a quaint little isolated town in Ohio, far away from the trials and tribulations of the world. During my freshman year, in 2004, there wasn’t yet cell service on campus, which was one mile long and strikingly beautiful. Invitations to campus parties were slipped under my door. I never signed up for early morning classes, the better to sleep in. The fact that I was having so much fun at Kenyon- and that the “real world”, by comparison, seemed so dull and joyless- only further reinforced my concern that adults’ statements about college might, in fact, be entirely literal.

I have a vivid memory of learning that Paul Newman, a famous alumnus of Kenyon, claiming that his years there were the best of his life. I’m sure it was a quote for some fundraising drive, but it hit my existential fear square on the head. Kenyon was the best four years of Paul Newman’s life??? What chance do I have?

I dreaded graduation deeply, and sure enough, my first few years out of college were rough. I hated having an office job. I hated getting up early in the morning, wearing hideous “office” clothing that fit me badly, trying to mold my personality to be blandly office-acceptable. But within a few years, life improved. I got a job bartending and left my office job; I loved doing something social and fast-paced instead of staring at a screen all day. I loved building community with my coworkers and learning the names of people in my neighborhood instead of commuting to Bethesda every morning. I wore whatever I wanted to work, and I came home at 4 am.

As I built my life in my 20s, I was always mindful of the anxieties I’d had back in college. I always wanted to feel like the life I lived was intentional, full of people, work, and hobbies I’d chosen and loved, so that I wouldn’t become a person who would look at a drunken 19-year-old and tell them, “it doesn’t get any better than that.”

I took to travelling by myself. Bartending didn’t offer paid time off, but it also didn’t have any kind of cap on vacation days. I would save up, find friends to cover my shifts, sublet the room I rented in a group house and take off for a month or two, come back and do it again. I stayed in hostels that charged $8 a night. I ate street food. I made friends. I fell in love with the world. I didn’t miss Ohio.

As bartending began to wear on me and my body, I gravitated toward a job that felt meaningful. I ended up taking a position as an organizer for Bernie Sanders’ 2016 Presidential campaign in Las Vegas, Nevada. Organizing was hard work and, since I was starting my career over again, it was an entry-level salary. But once again, I felt fulfilled and happy; again, I made friends. From there I got addicted to campaigns. They combined the high-octane energy of bartending with the adventurous nature of travel. Between cycles I helped out with environmental work at Sierra Club and Greenpeace.

Through it all I prided myself on looking forward; I’d loved bartending, but when the time came to leave, I didn’t miss it. Life was about growth, learning lessons, carrying them with you, new people, new places, new adventures. And then.

The world halted when COVID hit; it halted again, harder, when I got sick. For now, there aren’t any new people, places or adventures, and until I feel better, until there is some medical breakthrough or some existing treatment helps me radically, I won’t be travelling, getting a new job, or making new friends. I’m seized by what I believe to be the same impulse Proust had; I reminisce constantly about the lives I’ve already led. Moments come back to me, oddly, suddenly.

The crunch of wet gravel under my feet at Kenyon as I begrudgingly march across campus to class in the cold, surrounded by gothic buildings in the fog.

The clank, clank, clank of beer bottles as I load them in the freezer ahead of a busy night in the basement of Brass Monkey.

The hooting of an owl outside my grandmother’s house in Tampa, Florida, on a spring night.

The rumbling of a heavy suitcase as I drag it toward the baggage drop, anxious to be rid of it, excited to be heading somewhere, anywhere but here.

Proust was 38 when he went back to the beginning- the very beginning. As early as he could remember. He swims around in his memories of craving his mother’s arms as she sits in the garden, him upstairs in his bed. And from there he proceeds to tell the story of an entire (fictionalized) life. It is this urge that is familiar to me. The way that 80-year-olds in nursing homes long to pull out their photo albums and explain the story behind every photo; that’s the urge of the 38-year-old who is becoming homebound or bedbound.

I notice that my memories don’t tend to feature particular people so much as they do particular feelings, particular moments, akin to Proust’s madeleine. Often my body is in motion in these memories; driving a car, taking a walk. Wandering through a museum in Mexico City, smoking a joint in Prospect Park. It’s strange that after so many years, it’s only now that I’m reminiscing about Kenyon; now, when I’ve fallen out of touch with nearly everyone I was close to back then. It’s not as if I want to be 20.

But I do long to be mobile.

I long to put one foot in front of the other and hear the satisfying crunch of new-fallen snow. I long to step off a Stairmaster in the bazillion dollar gym complex wet with sweat, wipe my brow and head for the showers. It’s not that I long to stumble glassy eyed down a basement stairwell drunk on watered-down keg beer. It’s that I long to feel that life is ahead of me, not behind me.

I can’t know precisely how Proust felt as he began writing In Search of Lost Time. But I venture perhaps, trapped. Disillusioned. Exhausted. Physically, mentally. Tired of people and the transactional, often deceitful nature of relationships (something I believe comes through strongly in the books). His works are a gift to all, surely, but they are a particular gift to those of us who find ourselves trapped at home at a young age. Raw, unsparing, challenging, a work of pure grit, talent and defiance, Proust’s saga allowed him to lay claim to a future by repurposing his past.

Proust, a man so talented that for decades his illness has been doubted on the sole basis of that talent. “No one… could be genuinely ill and still manage an output of three million published words.” It is bizarre, the twin limitations and expectations put on chronically ill people.

Proust, genuinely ill, with an output of three million published words.

Proust, genuinely ill.

I do believe that chronically ill people can read something special in Proust’s works that others may not see. I read these volumes as his dazzling, inimitable love letter to life, his ‘fuck you’ to his illness, and his attempt- via detailed description- to immortalize what was slipping through his fingers: absolutely everything.