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How Singer-Songwriter John Prine Helped Me Accept A Life of Illness

It’s been a year since Prine died of COVID-19. His death made me reflect on what it means to be sick and how his songs helped me learn to cope.

Country folk singer John Prine wrote songs for the heartbroken. He died of COVID-19 a year ago and for the first time in years I tried again to explain what broke me. It’s not been easy to write because I am very ill and the subject is illness and illness is vast.

This essay is about what it means to be sick, not with the sort of illness that usually gets airplay, the sort that defines a part of your life in ways you ultimately learn to manage and work around, but with the sort that renders it utterly unrecognizable. We don’t make much space for narratives about this kind of illness. Perhaps because it’s less scary to think of illness as either treatable or terminal than it is to acknowledge that it sometimes leaves people horrifically disabled for the rest of their lives. Whatever the reason, we should make more space. Because it is terribly hard to learn how to be that sick when neither you nor those you rely on for support understand what it means to be so. Certainly it was for me.

Nearly eleven years ago, my life was shattered by a terribly debilitating, terribly under-researched and stigmatized chronic illness called Myalgic Encephalomyelitis (ME). I have spent the years since learning how to live what life I have left and Prine’s brilliantly written, warm, and uncommonly empathic songs helped me find acceptance, of suffering, of loss, and of myself as I struggled to find my place.

I first stumbled on John Prine years ago while making a playlist for my wife. We met while traveling in South Korea after college and got to know each other through e-mail and Skype. In the early months of our relationship, we exchanged CDs by mail, across the Atlantic, and mixtapes, now playlists, have become little love letters to each other that call back those ecstatic moments. I found “Angel from Montgomery” in an old compilation; it seemed a nice transition and slotted well into the space between two genres. It felt slight, at first, until I really listened.

The song is told from first-person perspective, an arresting choice for a male singer in the early seventies, and begins with Prine singing,

I am an old woman,
Named after my mother.
My old man is another
Child who’s grown old.

If dreams were lightning,
Thunder were desire,
This old house it would’ve burned down
A long time ago.

The language of the song is unassuming and tells the story of a woman who despairs in how her life has developed. She dreams of being rescued, not in the desperate way of one new to pain, but in the quiet way of one long resigned to it.

It’s a wonderfully evocative song. And, strangely, it seemed to know my place: my heartbreak and grief, my despair and resignation. It cut into me. It wasn’t just that the song is well written, that it has that alchemical quality all great songs have of assuming the meanings we give them. It’s that it’s a relatable song told with singular empathy, that seemed to speak the language of suffering I understood from years of illness.

I fell ill on May 18, 2010, two weeks after my second course of antibiotics for a parasite that I had contracted while traveling in Asia the year before. That first morning I felt like I had been hit by a bus. I was so profoundly exhausted that it seemed I had not slept in days. I had headaches and was dizzy and couldn’t think clearly. I interviewed for a job several days later and was so out of it by the evening that, in my thank-you emails, I daftly wished my interviewers “good luck, wherever life may take you.”

Myalgic Encephalomyelitis (ME) generally develops after an infection and many patients report the same abrupt onset that I did. One day they feel normal; the next they’re sick, as if a switch had flipped. ME patients and experts universally advise rest, as much and as early as possible after infection in the hope of recovery, but none of the doctors I saw did. I went about my life as best I could and with each passing week, their advice not to rest, not to sleep so much, not to allow sickness to make inroads into my life felt more and more monomaniacal.

I started a new job as a paralegal a couple months later and struggled from the get-go. The work was not difficult, but I struggled to read. I could not hold whole sentences in my head enough to write well. When I leaned back in my chair and closed my eyes to rest for a few moments, the world spun. Scanning document after document for keywords and checking for typos in reports for hours and hours only left me more dizzy.

Over the next months, I became sicker and sicker. Working and just managing my life became more and more taxing. I slept more greedily, for longer. Resting began to consume my evenings and my weekends too. At work, I struggled to maintain the appearance of normality. I felt exposed by each misstep — all those moments when I missed social cues or floundered for the right word and came up with the wrong one — and worried over my poor performance. After eight months, I had earned enough credits to apply for disability, but had become so sick that writing meant piecing together fragments of sentences, hoping they made sense.

And in the chaos, I began to feel untethered, to feel that I was being borne away by some dark current. I managed from day to day, but as I navigated from doctor to doctor, from work accommodations to disability, my helplessness against a future whose form I could not shape felt ever more visceral.

Seven years later, I read a Rolling Stone article about Prine while laying down to rest at the airport in Charlotte, on my way to a yearly doctor’s appointment that once buoyed me with hope, but, increasingly, left me feeling bitter and jaded. The article was fondly written and endearing, sharing stories of an off-beat man so alive with child-like enthusiasm he kept Christmas lights hung year round and so indifferent to his own celebrity that he would walk out to the mailbox in sweatpants and a “gravy-stained” t-shirt.

Country and folk luminaries, old and young, testified to the brilliance of his songwriting and, remembering the song on that mixtape, I resolved to explore the rest of his catalog. I started with “Lake Marie,” extolled in the article by Bob Dylan, but couldn’t find my way in. What really caught me though was “Fish and Whistle,” a toe-tappingly upbeat, almost joyously sung song, loose in narrative, that seemed to revolve around the struggle to reconcile our existence against the costs of living. The first stanzas of which read:

I been thinking lately about the people I meet,
The carwash on the corner and the hole in the street,
The way my ankles hurt with shoes on my feet,
And I’m wondering if I’m gonna see tomorrow.

Father forgive us for what we must do.
You forgive us, we’ll forgive you.
We’ll forgive each other ‘till we both turn blue
Then we’ll whistle and go fishing in heaven.

I listened to it over and over. The song’s conflicted existentialism grabbed me as I lay, struggling to determine whether these trips were even worth it. Whether I could justify the hardships of travel when I wasn’t getting better. Whether they served only to prove continued disability to Social Security administrators seemingly eager to strip me of my monthly benefit. A benefit so meager I could not survive on it, had I no other source of support, never mind also pay for the care needed to prove I still deserved it. And I delighted in the song’s subversive suggestion that, when we die, God will need our forgiveness as much as we will need his.

ME patients generally say you’re most likely to recover in the first two years, so passing into the third is when the buoyant dreams of recovery begin to sag and the reality of illness sets in, at least that’s how it was for me.

The defining symptom of the disease is Post-Exertional Malaise (PEM), which means a delayed, severe worsening of symptoms following mental or physical activity that can last for days and, for the sickest patients, weeks or more. You can’t even begin to describe the disease without explaining the symptom, so integral is it to the lived experience; the extreme fatigue, unrefreshing sleep, headaches, dizziness, brain fog, muscle soreness, and sensitivity to light and sound, all worsen terribly in the days following activity, in what most patients refer to as a crash. For patients, as of course for me, this enforces a rhythm where any substantive activity must be preceded and followed by days of rest.

At the beginning of my third year, I was still finding my footing in learning to live by this rhythm. At the time, my wife and I lived in a tiny apartment paid for by her employer, which had a kitchen so small we had to wash pans in the bathtub, but a closet so large you could put a bed in it. I laughed about that incongruity for weeks until I realized that I was so sensitive to light I actually rested better in that darkened space than the many windowed lounge. Even so, I was so sick that I had to rest in that closet for days to engage in activity, like going to a movie or cooking a proper meal. Sometimes I would rest for days only to find I was still too unwell to pursue plans I had set. Other times, when I had done too much, I suffered so badly that I could not even read on my phone while I lay in bed. All I could do was wait for the suffering to pass.

It’s hard to convey how soul crushing it is to live that way. It’s not just living from moment to moment wracked by headaches, persistently dizzy and lightheaded, unable to think clearly, frequently losing concentration mid-thought, and absolutely crushed with muscle soreness and exhaustion. It’s that you’re lying in bed experiencing all these symptoms and, when they’re really bad, you’re not even bored because the suffering is so consuming that the question of boredom doesn’t even enter the frame, even when you’re so sick you literally can’t do anything. And when you don’t have carers — few ME patients do — you have to live like this: prepare meals like this, do your laundry like this, do your taxes like this, arrange visits and tests to prove you’re disabled like this, and, for many people, somehow stay gainfully employed like this because of how hostile the disability process is to this disease.

And this day after day. You struggle through the day, go to bed, and your sleep is so disordered and poor that you wake up as exhausted as when you went to bed. And because there are no effective treatments, there is no escape.

According to interviews, Prine began to write songs early on, when he was still learning to play the guitar, partly to master new chords and partly because he found that he sounded better playing his own songs than covering others’. He wrote his first two songs, “Sour Grapes” and “Frying Pan,” at the age of 14 as a present to a girlfriend he would later marry. When he wrote “Hello In There,” a wonderfully humanizing song about aging and loneliness inspired by childhood trips to an “old folks home,” he included every chord he knew.

He kept writing in the years that followed and when he played, did so mostly for “himself, his family, or ‘to impress girls.’” He got a job as a mailman in nearby Westchester, Illinois after graduating from high school in 1964. He was drafted into the army in ’66 and when his tour ended two years later, returned right back to delivering mail. He wrote many of his most iconic songs during those years working for the post office and said later that his mail route gave him space to think and write.

He didn’t perform publicly, at least not much, until 1970, when, he says, he got up the courage to perform at an open mic night at the Fifth Peg in Chicago. His songs so stunned the audience that, when he finished, they were silent, leaving him feeling momentarily that he’d bombed, until they burst into applause. The club gave him his first regular gig and word began to spread. He realized quickly that he would need more songs if he wanted to keep his audience of regulars entertained. He wrote “Souvenirs” while driving to the club a couple weeks later and that was the next song I got stuck on after “Fish and Whistle.”

It’s a gorgeous song intricately lined with regret and the loss that comes with time. It’s opening lines capture the brokenness I felt going into my fourth year, knowing each day into the future would be as bad as all those already behind me:

All the snow has turned to water,
Christmas days have come and gone.
Broken toys and faded colours
Are all that’s left to linger on.

I hate graveyards and old pawn shops,
For they always bring me tears.
I can’t forgive the way they robbed me
Of my childhood souvenirs.

Memories, they can’t be boughten.
They can’t be won at carnivals for free.
Well it took me years to get those souvenirs,
And I don’t know how they slipped away from me.

By the beginning of the fourth year, I couldn’t take the relentless suffering any longer. Man is not made to withstand such hardship. Or maybe I just wasn’t. I began to think about killing myself, at first in a kind of general way — as in, “I can’t keep living like this” — and later in a more directed way, as I researched how I might actually do it, so that it would stick, when the moment came that I was all used up.

I wrote about it, to sort through my emotions and try to convey to others just how crushingly awful the illness could be. I even presented what I’d written to the government board responsible for ME and, after the initial shock, got a response somewhere between a shrug and “Well, mental healthcare is important.” On especially bad days, when it all became too much and my emotions would flood out, I would tell my wife how close I felt to being used up, how it felt like every day my soul was being ground away, how there was so little of me left.

I’ve shared my illness with her as best I could over the years and she’s always been loving and supportive. She knew I was struggling and understood why. And though I always promised her that I would never kill myself without giving her advance warning, she began to come home from work fearing every day that she would find me dead. That she would open the door and that would be it.

The stress began to make her suffer too. She has Ehlers-Danlos Syndrome, a mild case which limits her only slightly. But the stress made it worse. Her hands began to hurt, her joints flared with pain. Though she loves to cook, she stopped entirely when stirring and chopping caused too much pain. Soon she found even signing her name on documents was difficult, because her muscles were so weak that her thumb would bend backwards when she clutched a pen.

On the worst days, when I felt most worn out, heartbroken, and disconsolate, she, unable to stand the stress herself, would say, “You can’t keep doing this. You have to find a way to accept it.” And it would feel terribly unfair and heartless, however much I knew it to be true. How can you adapt to a life little better than being drowned? How can you find joy in those brief moments your head is above water and endure all the others when it is not?

Prine often drew from the everyday in writing his songs, taking some fragment of emotion or experience and building a whole world around it. When a friend suggested he write another song about old people, like “Hello In There,” he instead fixated on the image of a suburban housewife standing at her kitchen sink, fed up with life, and wrote “Angel from Montgomery.” He wrote “Paradise” as a tribute to his father and an expression of disgust at the coal company that had strip-mined the Kentucky town in which his parents had grown up and he’d spent formative summers.

In many of his songs, the meaning is plain. Sometimes, blatantly so, as in his two most overtly political songs, “Your Flag Decal Won’t Get You into Heaven Anymore” and “Some Humans Ain’t Human,” which raged against the wars in Vietnam and Iraq, respectively. Most are not so message-driven, but tell relatable stories, often of grief and heartbreak and loss, that demand little interpretation.

Other times, his songs are more opaque and kaleidoscopic. “Lake Marie” is this way, beautifully so, interweaving three unrelated narratives across time about the same lake near where Prine grew up. Similarly, his song “Six O’Clock News,” inspired by a childhood friend who discovered he was the product of incestual rape, is so shrouded that it led one person to comment on JPShrine.org, “A beautiful song.. just wish I knew what it was all about.”

Furthermore, for all the depth I found in “Fish and Whistle,” Prine has described the song variously in the years since he composed it as a song written with no purpose in mind, with barely connected narratives that somehow worked when set against the chorus.

“Bruised Orange” is the first Prine album I came to love. It’s his fifth album, released in 1978. The titular track is more opaque, than his earlier songs at least. Inspired by the tragic death of an altar boy at the church Prine attended growing up, the song speaks to the difficulties of finding acceptance in life. In its chorus, he sings:

You can gaze out the window get mad and get madder,
Throw your hands in the air, say “What does it matter?”
But it don’t do no good to get angry,
So help me I know.

For a heart stained in anger grows weak and grows bitter.
You become your own prisoner as you watch yourself sit there
Wrapped up in a trap of your very own
Chain of sorrow.

I gravitated back to it often in the years after I had come to realize that ME would define the rest of my life, in the years after I’d promised Katie never to kill myself and resolved to find some way to live.

Coping with a devastating chronic illness is a different beast for each person. While learning to endure relentless suffering is absolutely brutal, the real challenge is in finding your place in this new world. Being sick means needing to accept that the life you had before is gone. It means learning how to cope with the alienation and isolation that illness brings. It means learning how to find joy in small interests and accomplishments, like doing a load of laundry or mailing a bill. It means coming to accept that you are not less than for being sick and for having to adapt in the ways that you do. Each of these demands is impossibly difficult, yet each person feels their weight differently.

In the early years, I struggled to come to terms with having my life ruined by a disease so disreputable that I couldn’t get basic medical care without being subjected to belittling comments and suggestions. I carried with me all the idiotic and condescending treatment I received — the naturopath who decided I should go back to India to find my “qi,” when three weeks of turmeric supplements didn’t restore my health; the psychologist who opened my appointment with, “So what makes you think you’re sick?”; the nurse who, when I described my illness as feeling a bit like having a hangover after having not slept for a week, very seriously and accusatorially asked me how much I was drinking.

I discovered fury and incredulous, righteous anger at the faceless Social Security administrators who decided disability applicants could not lie on the floor to rest in the time they waited to be called into court. Who tucked into my approval a secondary diagnosis of “major depressive disorder,” despite their own psychologist finding I did not suffer from depression.

I was aghast and hurt when my father suggested yoga and meditation as cure-all and a family friend decided I needed electroshock therapy. I couldn’t grasp why family and friends seemed not to hear or understand the severity of my illness when I tried to explain.

I felt cheated and small that everyone else’s lives just continued as normal while mine broke apart. When friends went on to grad. school and advanced in their careers, I felt jealous and worthless. It’s no revelation as a sick person that society’s expectations shouldn’t determine your worth, but the feeling of failure creeps in anyways when you cannot work, when you struggle to care for yourself, when your life is static.

But what I struggled with most was not the alienation and isolation of being sick, with this disease, nor having to accept that I would never be well enough to have a career. Where I struggled most was in finding a way to accept that the things that brought me the most joy, that made me feel like me wouldn’t be there any more. Hiking, traveling, rock climbing, even just reading or hanging out on a Sunday morning drinking coffee and listening to records would not be part of my life. For years I struggled to find replacements, things that could give me some small sense of meaning or purpose, so my days did not feel so crushingly empty.

A person’s life must have more good than it has bad. It’s a simple calculus that gets lost when we, as a society, are so obsessed with suicide being the result of depression that we cannot fathom being so sick that death might be a legitimate improvement. For a while, I was so sick that death would have been an improvement. And for even longer, I was so sick that I could not identify any hobbies that I could actually do that interested me. At my sickest, one doctor suggested Bonsai. As if Bonsai could redeem all that I’d lost, steel me for all that I had to endure.

More than most other singer-songwriters, Prine’s songs draw you in. In part, it’s his beautiful, mournful melodies, how they project a mood and how his voice — coarse and nasal in the early years — seems to make real the relatable stories he told. Where his songs come alive though is in how vividly imagined they are and how breathtakingly, detailedly described. His songs are immersive, richly textured, compact little narratives that set you in an emotional moment and knock you out with sharply perceptive one-liners. Consider “Far From Me,” a song loaded with the slights and melancholy of dying relationships, which begins:

As the cafe was closing
On a warm summer night
And Cathy was cleaning the spoons
The radio played the “Hit Parade”
And I hummed a long with the tune.
She asked me to change the station
Said the song just drove her insane
But it weren’t just the music playing
It was me that she was trying to blame.

Devastating. And the end of the narrator’s relationship only becomes more evident as the song progresses. All these details set a scene in a way few songwriters manage. But his richly textured lyrics were more than a stylistic choice meant to fill out the moments he was sketching. They were an effort to anchor listeners, so they could bring his songs into their own lives. About his songwriting approach, Prine once said in an interview:

I think the more the listener can contribute to the song, the better; the more they become part of the song, and they fill in the blanks. Rather than tell them everything, you save your details for things that exist. Like what color the ashtray is. How far away the doorway was. So when you’re talking about intangible things, like emotions, the listener can fill in the blanks and you just draw the foundation.

That approach is a large part of what makes Prine’s songs so personal; more than their relatability, it’s their expansiveness, which lets each of us layer his stories with our own meanings. It’s that quality that let me see in “Fish and Whistle” the existential struggle I felt and in “Bruised Orange” the meditation on coping with grief that I needed as a sick person. It’s also that quality I found listening to “Sam Stone” and “Illegal Smile” — two songs that seemed to offer converging takes on drug use — as I began to drink and get high on those days I was most despondent, when I struggled to decide whether I was just coping or wasting away.

I felt stuck, especially in the years after I had resolved not to kill myself, but before I had managed to find new interests and improved enough physically to actually pursue them.

Some days I would wake up in bed, feeling miserable, feeling like I’d been worked over in the night, headaches and dizziness and muscle soreness all grinding me into the mattress. And I’d lay there, for ten minutes, twenty minutes, once or twice even thirty. I would wonder whether it was worth getting up at all, and then always, eventually, decide that since I wasn’t going to kill myself, I might as well get up, go bathe, and struggle through washing the dishes from the night before, as I went about my tiny life.

Several months went by like this. With good days, occasionally, where I wasn’t quite so ill and didn’t feel so heavily the weight of this damned disease. And many more bad, when I was terribly sick and terribly dispirited. One day I woke especially ill, feeling especially despondent, and had a drink after breakfast. I hadn’t drank more than a beer or two for years because of how much sicker it left me in the days following. But we had a bottle of whiskey left over from a cranberry sauce recipe the previous Thanksgiving, and it helped. And when I discovered later that I could get a medical marijuana card and that we had a bottle of oxy in a cupboard from an old surgery, I would get high. I realized over time that the task of a bad day was just to get to the next.

Prine’s songs are relatable and expansive, imaginative and poetic. The real magic though, is in something that comes before all that, in the empathetic way he imagined characters and wrote their stories. He didn’t just write stories of sad people with sad lives. To paraphrase frequent collaborator Iris DeMent, he “saw what was noble” and wrapped that up in melodies, ennobling and humanizing his characters in a way that set him apart from his peers.

His empathy transforms narratives that might otherwise feel banal and makes them feel transcendent. This is perhaps no more obvious than on “Other Side of Town,” in which he humorously imagines a man taking shelter from his wife’s nagging by daydreaming. At face value, the song should feel antiquated and sexist. Instead, it feels tender and tragic, partly because the narrator’s hurt comes from a position of love and partly because Prine seems to care enough to think the narrator’s emotions matter whatever the context. And as a listener, that boundless empathy makes you feel elevated in your own struggles when you find something of yourself in one of his songs.

That’s what I felt when I first listened to “Angel From Montgomery” and as I fell into the rest of his catalog. For every emotion, I found in his music a warm embrace and the love and humility with which he told his stories made it feel more okay to suffer and to be broken, to be in transition.

When I began to find that I could get through a rough day without drinking or getting high, when I had reached some measure of acceptance, but still felt utterly broken, I’d find a song that knew my place. And with time, as the grief faded, I began to see more clearly the wry smile beneath his storytelling, to laugh at the wordplay and little puns he tucked into his songs. To appreciate the more ecstatic side of his characters’ often ambivalent reflections on life, as in “Flashback Blues,” where he sings:

Photographs show the laughs
Recorded in between the bad times
Happy sailors dancing on a sinking ship
Cloudy skies and dead fruit flies
Waving goodbye with tears in my eyes
Well, sure I made it but ya know it was as hell of a trip.

And as yet more time passed, I found myself gravitating to the more tender, lighthearted, and joyful parts of his catalog, from the more surreally whimsical, like “Jesus — The Missing Years” to the more comfortingly warm, like “Falling in Love Again,” from his second duets album.

I still hoped to recover in the early years and pursued any treatment that seemed half-plausible, from the more realistic, like drugs and supplements, to the more aspirational, like living in the forest for two weeks to try to figure out whether I might have some problem with household mold. In the fourth year, that pursuit produced a terrible worsening of my cognition, but a significant improvement in my other symptoms, at once stealing and bestowing function and, paradoxically, setting me on a path to learn how to live the life I had.

My first hobbies as a sick person were all, ultimately, born of this change. For years, I had spent my endless days of rest listening to audiobooks. Overnight, though, I lost my ability to focus and found myself drifting off in conversation. It became a herculean task to constantly redirect my mind back to whatever was being discussed. When I tried to listen to books, minutes would pass before I would realize I hadn’t really absorbed a word.

I needed some new way to burn all the time my body demanded I rest and, fortunately, I soon found one. My wife and I had just bought our first home and needed furniture. We both liked mid-century modern design, so I set about scouring Craigslist and eBay. I soon found, though, that I was developing a love for design and an appreciation for the aesthetic and economic drivers that fueled early modernism. It still seems a bit embarrassing to admit, but that became my first hobby as a sick person, searching for deals on design items and learning about the history behind them.

There’s only so much to browse in a day, though. I was still desperate for stimulation and discovered that, while they exhausted me significantly more than listening to audiobooks, video games were engrossing enough that I could play without my mind drifting off. I could disappear into them just as I had into books when my mind could still focus to read and into movies when I hadn’t watched so many they began to feel reductive. I began to spend hours a day playing games, something I still do, when I am well enough. They burn time and bring me some joy and I am grateful for them, however much their emptiness reminds me of all the ways I might otherwise have spent my life, had I never fallen ill.

For all I had lost cognitively, for how devastating it was not to be able to listen to books anymore, the physical improvements felt like a minor miracle. Over some time, I improved enough that, when resting, I would wake without feeling so brutally the crush of illness. I could pass through a day without needing ice packs for my eyes, which often seared with pain. I no longer needed regular ibuprofen for incapacitating headaches and terrible muscle soreness. I could rest without feeling absolutely gutted every moment from the fatigue and dizziness and malaise.

With that relative wellness, one winter night as she drove home from the airport, I baked my wife a surprise birthday cake. It was not pretty. The icing was pale yellow, but verging on orange, and decorated drunkenly with multi-colored sugar stars and a haphazardly scrawled “Happy Birthday!” And while the recipe was fine, I baked the cake just a bit too long. Of course, she was overjoyed anyway. And seeing how happy it made her, I resolved to learn how to cook and bake. Over time, I found it became a passion. In the years that followed, as I followed threads down ever more niche interests, from bread baking to canning and pickling, I found it easier and easier to wake up in the morning without the things that used to mean so much.

This May, I will have been sick for one third of my life. I seem now to have arrived at a life I am able to live. While I’d like to feel that there was something in me that has gotten me this far, that I have been especially able to reshape myself to match the jagged contours of illness, the truth is that I have been lucky. Relative wellness and strong emotional and financial support bought me the time I needed to adjust.

I no longer struggle as I once did. I am less severely ill than I once was, for the most part, and more inured to suffering. I live my life when my illness allows and rest when it dictates I must. I’ve learned how to be patient when a cold or a relapse consigns me to bed for months or a new symptom pops up and shrinks my life just a little bit further. I’ve learned how to better manage the emotions that come with suffering from a marginalized illness. I’m able to set belittling comments aside. I still feel fury at how my disease has been mismanaged, but have less need to express anger at that fact.

I have let go of grief, about as much as I think I ever will. I am less troubled by all the things that I have lost or all the things I will miss out on in the years ahead. I have one life to live and I do my best to fill it in ways that bring me happiness.

I have hobbies that I love, however seldom I can indulge them. I am blessed with a spouse that loves and accepts me. We have a cat I adore who follows me from room to room as I go about my day and bites my ass when he needs food or water or play, which shouldn’t be endearing, but is. And, though very rarely, I sometimes feel well enough to appreciate those quiet, crystalline moments when everything falls away and the beauty of the world surges, in the golden hour, in the crisp air of a New England winter, in the way the snow crushes under my feet when I walk around the garden.

And, yet, while I’ve managed to find a life that I can live, I can’t quite figure out how to make these things enough. Closing in on eleven years, I’m dogged by the same basic question illness has always posed to me: how do you live a life that is meaningful when you can’t do the things that make you feel validated?

For all I feel I’ve learned, for all I’ve grown, the fact is that the illness still circumscribes my search for worth and purpose. I still cannot do the things that would make me feel whole, either because I am simply too unwell or because the things I can do in a limited way, like writing, come at such physical and mental cost that I ultimately derive little fulfillment from their doing.

I’ve looked for fulfillment in a range of spaces over the years, but always, the costs of being productive are too great for me to persevere. It’s taken me a year to write this essay. I’ve spent so many hours struggling to extrude a few sentences at a time that I’ve long since lost the feeling of validation I first felt at being able to express what being sick meant to me. And the costs of that effort haven’t just been measured in worsened symptoms and days of rest necessitated. They’ve been measured in the meaningful activities I haven’t been able to do during that time and the extra support I’ve needed from family when that exertion has made me even less able to care for myself. So I’ve learned over the years not to set my sights too high, that the hard fact of illness will flatten my ambition every time.

And that leaves me feeling trapped, not in the way I used to, when I was sicker, where I struggled to figure out how to endure suffering that was unbearable every moment, but in the way that I am well enough to do some of the things that make life worthwhile from day to day, but few of the things that make life worthwhile from year to year.

I don’t know how to solve this problem. I don’t know whether salvation lies in chasing the things that would make me feel fulfilled or learning to elevate still more what I do have. I like to think that one day I’ll reach deeply enough into Prine’s catalog that I’ll figure out how to square this circle, but I’m not sure it’s a problem that has an answer. His music gave me space to grieve when I was grieving and helped me see the humanity of my own frailty when it was all too easy to see weakness. But can it answer this more basic question about how to not want more? Can it teach me how to hold on to those crystalline moments of beauty and contentment when illness washes over me heavy? Can it show me how to render my dreams to a scale that fits the life of a man who is sick?

I take solace from knowing that my struggle is fundamentally a human problem, even if its outlines are made starker by illness and marginalization. And in the grand tradition of ascribing preternatural wisdom to songwriters, I like to think that if Prine were alive today, he’d tell me I can learn to be okay with my dilemma because it’s a problem each of us has, in our own way, at our own scale. That if you can’t learn to be okay with getting less from life than you hoped, at least you can take comfort from knowing we all experience that struggle, to one degree or another, and learn to feel your humanity more deeply within it.

I think I can find a way to accept that answer.

Poli/Sci grad. ME patient for 10+ years. Occasional writer.

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