The Wisdom Narrative

The stories that we tell about illness are almost entirely about overcoming it, but in the event that it can't be overcome, they are about growing wiser as a result of suffering. During my illness, I kept finding that others wanted to assuage my pain by reassuring me of the good things it had brought with it. They had embraced the reassurances of a cultural narrative in which the ravages of illness are offset by the enlightening spiritual knowledge they produce — a narrative in which sickness is bearable because it transforms you, like a fresh tablecloth on a dirty table. One spring when I was at my sickest, a close friend visited me at my apartment in Brooklyn and, drinking herbal tea beside me on the couch where I spent most of my days, chirped about all that my illness had taught me. Surely, she said, such lessons were worthwhile. I bridled, then snapped, "I would prefer not to have learned any of them this way, to be honest."

In the American pop spiritual framework, illness is a vehicle for self-improvement and hard-won acceptance, a line of thinking the sick patient quickly finds is everywhere. It shows up in Alice in Bed, Susan Sontag's play about Alice James (sister to Henry and William). At one point, a friend blithely encourages Alice, who is at the moment quite sick, to "want what you are capable of" and shrug off the rest. "Life is not merely a question of courage," Alice tartly replies. In Illness Narratives, the sociologist Arthur Kleinman praises patients who are able to handle their illness with "grace." The gesture is analogous to an intervention that Lawrence Langer, a Holocaust scholar, has observed in interviews with Holocaust victims: often, the interviewers interrupt to undercut the story the victims are telling, re-directing them instead to "a story of human resilience." The experiences of chronically sick patients and Holocaust victims are incomparable, but onlookers respond to both by focusing on the positives, presumably because it makes the pain of witness bearable. Little wonder, then, that illness has been seen as a vehicle for spiritual change for centuries in a Judeo-Christian tradition that emphasizes the instructive, even sacramental, value of human pain.

I had read too many letters and diaries written by people suffering from serious diseases to feel sanguine about healthy friends focusing on the "spiritual growth" illness brings with it. Until we mourn what is lost in illness — and until we have a medical community that takes seriously the suffering of patients — we should not celebrate what is gained in it, or so it seemed to me.

And yet some part of me understood what my friend meant and why we are so quick to see value in pain. Illness is an experience that tests you and forces you to rebuild your life. Its destruction makes room for recreation. As the sociologist Arthur Frank puts it in The Wounded Storyteller, his 1995 analysis of the unexamined realities of illness, "unmaking can be a generative process; what is unmade stands to be remade."

At various points when I was most sick, and as I began to recover, I wrestled with whether anything good can be said to come out of chronic illness: Does illness bring wisdom or something like it? What does it mean to suffer?

I got sick, I got worse, I got better — that's how the usual illness narrative goes. But just as I can't tell you exactly how or when my illness started, I can't write you the ending. The narrative isn't a tidy one. Which version of the story I tell: it depends on what month, what day, even what hour you catch me. I am luckier than I thought I would be when I got acutely sick in 2010. After five years of suffering without explanation or the possibility of treatment — physicians often saw my symptoms as products of my mind — I finally received a diagnosis: a perceptive doctor realized that my labs suggested the presence of a tick-borne illness. As skeptical as I then was of doctors who thought they could help me, I allowed the doctor to treat me with antibiotics and other drugs. The treatment transformed me from a bedridden person who could not recall basic words like "spring" to a typically-functioning and energetic thirty-six year old.

Of course, as other people who deal with chronic conditions will understand, I am not "better" in the way that healthy people use the word "better." Years of living with an untreated systemic infection left damage in its wake. I also have two autoimmune diseases, probably triggered by the years of living with infection. Along the way the focus of my story shifted from a quest for recovery to something else, something murkier.

*

Chronic illness is particularly difficult to map onto a quest or restitution narrative, which, as Frank observes, are the most common narrative frames we use to talk about illness. It is almost by definition never a story of overcoming and always partly what Frank calls a "chaos narrative," because the disease's trajectory never fully resolves. As soon as you achieve some kind of insight into the condition, it changes. (Meanwhile, those around you often stop engaging with its most challenging aspect: its ongoingness.)

I first read Frank's book in my apartment in Cambridge, Massachusetts, during a historic two-day snowstorm that brought the city to a halt. In the vast quiet, small sounds stood out, announcing themselves as the record of an already vanishing present. A black ice coated the sidewalks. In the afternoon, men dressed in puffy white coats resembling hazmat suits shoveled the snow and walked aimlessly among the drifts, futilely pushing against the whiteout that would soon cover even the parking meters.

Frank's insights into our contemporary hunger for framing illness as a kind of quest reminded me of a passage from an essay on virtue by the philosopher Alasdair MacIntyre. It makes a simple point: What you think a quest is for is never what the quest is for. A traditional medieval quest, MacIntyre argues, is not "a search for something already adequately characterized, as miners search for gold or geologists for oil." Rather, it's through "encountering and coping with the various particular harms, dangers, temptations and distractions" that "the goal of the quest is finally to be understood." The quest "is always an education ... in self-knowledge." It entails a journey that forces you to be present in ways you might rather not be, but it does not necessarily involve triumph — although some part of me had always thought it did. The quest, in this view, turns you from a bad reader of circumstance, prone to sentimental expectations, to a good reader, alert to life's unseen dimensions.

As a child I used to read and reread the tales of King Arthur's Court, lying on the couch of the summer cabin we visited, legs dangling over the side. I remember losing myself in a place where fantasy was alive and the shadows in the room felt like doorways into great romances. Toward the end of the tales, Galahad, who has been prophesied to be the greatest knight of all time, goes on a search for the Holy Grail. Although Galahad discovers the Grail, he elects to die — pure of soul — instead of bringing it back to Camelot, where he would become a creature of worldly concerns again. The goal of his quest has shifted from returning home to achieving spiritual transformation. As a child reading this for the first time, Galahad's decision made me painfully sad. The children's books I'd read had led me to believe that the heroes always came back. When I reread the tales of King Arthur, I used to stop before I got to Galahad's discovery, and imagine different outcomes.

In retrospect I see that I was a bad reader from the start, in search of the easy ending. I read for what allowed me escape rather than for news of what was actually to come. I looked away from the bruises blooming in the body; I kept going back to the false goal of the quest.

As a sick person, I didn't have that option. I had to become a new kind of reader. And this reader must acknowledge that not all stories are quests. For some people being ill remains so awful and so taxing that it brings nothing other than chaos with it. Perhaps coming to grasp this is the wisdom that illness brings with it.

*

The more I thought about it, the more I saw that the "wisdom" narrative was the product of some complexities worth unpacking. First, it relieved the interlocutor of her feelings of anxiety about illness. If illness could be said to bring growth with it, well, then, it wasn't exactly the thing that she feared — it wasn't a tragedy, it wasn't a kind of prison. Instead, it was dynamic, like running a marathon or doing a wellness cleanse: challenging, punctuated by suffering, but ultimately "worth it." Second, it dawned on me, in an era when so many of us feel busy-unto-death, when the culture seems not just fast but perhaps increasingly shallow, the questions I kept getting about illness actually betrayed — could it be? — a kind of yearning for a forced spiritual encounter, a slowing down and reckoning that don't come in our lives otherwise. Listening to the questions that came at me, it began to occur to me that what my interlocutors wanted was for me to bring a spiritual flavor and framework to illness, to be to disease what Marie Kondo is to clutter, to GOOP-ify my experience of suffering. They wanted their own possible future illness to offer a necessarily radical intervention, something they might benefit from, without which they'd just meander along until one day they, too, were forced to confront the deeper realities of our time here. There is a reason, as the historian Jennifer Ratner-Rosenhagen has put it, that "wisdom-talk is big business in America": in the absence of a coherent spiritual tradition, a debased popular wisdom culture springs up its place. Think Kabbalah strings, meditation apps, positive thinking, or GOOP's trendy embrace of autoimmunity as a manifestation of the perils of modern life, for which, of course, a pricey turmeric latte powder is prescribed. (A powder I myself bought and used in my own search for answers.)

You might think that this appetite for news of illness-inspired-growth is just what we need to crack open a deeper conversation about illness, a space where ill-health can finally find a voice. But there's an irony here. This "wisdom" the ill person has gleaned is, in the first place, the result of a quest to discover why it is so problematic to be sick in this culture. From this perspective, my friend's desire to skip straight to the "positive" aspect of illness was itself a kind of recursive example of the distortion I was trying to write about: it reflected the fact that our culture tries to short circuit the quest to get to the goal. It is, of course, a very understandable impulse. I used to do it too.

That illness does change you — this is certain. The word wisdom comes from the Old English word "wise" (meaning knowledge, learning) and "doom" (meaning judgment). Perhaps ill people do, in a sense, become wise through encountering doom, and as a result they become more complete versions of themselves, having made it through some of the hazards of the course, experiencing what John Ashbery calls "the charity of the hard moments." Those encounters perhaps allow us to see ourselves — and our mortal condition — more clearly.

But it would be false not to acknowledge that this knowledge is born of loss, of resignation to a condition that forces us to give up on aspects of ourselves we had hoped might bloom. Wisdom, in this understanding, is knowledge coupled with the wound that comes from encountering doom.

For these reasons, while I was most ill, I began to think about the fact that wisdom is not a goal but a process. A quest suggests a goal, but as MacIntyre writes, it's the questing — that journey — that actually defines a quest, not the sought-after pot of gold. As a process, it can always break down. I would contend that it does break down as soon as medicine stops recognizing the reality of your illness, or dismisses your pain, your reality. It can also break down when the suffering recurs without explanation. My own illness's meaning, in other words, derives also from all the ways it was not allowed to mean until I wrote this account of its meanings.

For our medical system not only failed to diagnose me, it stopped my quest in its tracks. Rather than acknowledging what was wrong with me, the medical system asked my body to behave as the obedient container of a distinctive and previously understood disease, rather than as the site of a complex illness that has a biographical as well as biological component. "The silences I speak of here are unnatural," the writer and critic Tillie Olson wrote in Silences, "the unnatural thwarting of what struggles to come into being, but cannot." She was speaking of the female writers who never wrote, but her words could apply to chronic illness. To become chronically ill is not only to have a disease that you have to "manage," but to have a new story about yourself, a story that many people refuse to hear — because it may be, as stories go, deeply unsatisfying, full of fits and starts, anger, resentment, chasms of unruly need.

My own illness story has no destination; rather it is the sum of all of the ways it taxed and surprised me; of all the people it threw me into rough contact with; all the accommodations to my body and limitations it led me to become more intentional about, the discovery of my own suffering; the pride I did feel, at times, at having endured, and at having persevered until I got a diagnosis, the years spent longing for a child before having a child. It is the fact that although I have children, the years of longing remain written on my body and etched into my soul, such as it is: The longing is with me every time I hear my son cry from his bed at night, or see him reach his plush, velvety, chubby arms up to me; it fills me with a guilt and overwhelming rush of love for him predicated on just how unlikely it is, to me that he is in the world. Sometimes I catch myself thinking that I don't have a child, that he is part of a long dream, a deliciousness I dare not enjoy too much — or dare not stop enjoying — lest he is snatched back.

My illness left a window in me through which anything can climb, at any time.

*

Being ill is a social experience, as John Donne realized, when his acute case of spotted fever led him to write "No man is an island." It is what Frank calls dyadic: impossible to understand without thinking about the self in relation to others. Yet our medical culture insists on the solitariness of illness: everything about it intensifies the "monadic" aspect, isolating us in hospitals where anonymity differentiates and isolates rather than embraces and unifies in the Whitmanic model of interconnected humanity. Your identity is thwarted, silenced, distorted, in a culture that does not recognize itself in its sick members. To me, one of the most important discoveries in the process is that solitary striving, my American habit of self-focus, was in some fundamental way a degradation of the most powerful things about our lives, which now seem to me to be our interconnectedness and need of others. I look at my small son, and I see that he needs me, and in that dyad I see what is most meaningful in the end.

I wrote all this at the end of a second late winter snowstorm that would make the week the snowiest in New England history. As the snow came down for the second time in two weeks, I found myself thinking of James Joyce's story "The Dead," which ends with a languorous vision of a world covered by snow: "He watched sleepily the flakes, silver and dark, falling obliquely against the lamplight. ... His soul swooned slowly as he heard the snow falling faintly through the universe and faintly falling, like the descent of their last end, upon all the living and the dead."

The gables and lintels of the windows were dusted in white, the whole world quiet except for the thrum of snowplows, the beep-beep of trucks backing up, the sounds of our present lives. I found myself slipping into a deep calm, thinking of the living and the dead intertwined, all together beneath the flakes and the dirt of the world. It was a painful calm: a sense of how little control we have over the course of lives, and an understanding that the deepest meanings come from our contact with that portal between control and submission. This was not necessarily an expansive vision, but in its accuracy it was, for the moment, soothing. As the poet Audre Lorde put it, of living with breast cancer, "My visions of a future I can create have been honed by the lessons of my limitations."

*

During a trip to Death Valley in 2013, my partner Jim and I had driven down to the salt flats in Badwater Basin. It was already late in the morning and the sun was high overhead. The flats stretched shockingly out before us — a vast cracked expanse of salt crystals covering a mud basin, the surface of the earth blanched a glaring white. It was so hot the heat seemed to pound at your skin, pulsing in waves. There was a path out to a vantage point and we walked along it. The glare below and the sun above baked our skin. I began feeling dizzy as soon as I got out of the car but focused on the signpost. Growing dizzier and dizzier, with chills flushing me, I began to feel I would never make it there, that I was living, suddenly, in Zeno's Paradox. What was only a few short steps felt like miles; my limbs were watery, and my palpitating heart went liquid, as if it might leak into my body, turning me from person to lake.

Likewise, at my sickest it seemed to me that my illness would never abate — that every day would be a purgatory of suffering, in which my main task was merely to survive. That it did abate now feels natural to me. And so I can tell the story of walking the salt flats without the embodied panic I felt then.

But as Audre Lorde said, "I would lie if I didn't also speak of loss."

To be chronically ill is to be in a state of ever-present "camouflaged grieving," as the historian Jennifer Stitt put it to me. It was this ever-present grief I felt was being swept under the rug when my friend counseled me to see the good that had come of my illness. She wasn't wrong that something good had come of it — but her quick counsel negated the complexity of the process, the quest.

Our motivations are murky even to ourselves: "the world of busy pretense," to use Zygmunt Bauman's phrase, seduces us away from our more painful realities. If the object of your illness quest is simply to get better, you are not yet deep on your quest. Even the ill get it wrong, falsifying their experience to make it more palatable to others. In 1886, four years before her death, Alice James wrote her friend Fanny Morse the following reassurances:

Pray dearest Fanny don't think of me as a forlorn failure but as a happy individual who has infinitely more in her life than she deserves. You know that ill or well one is never deprived of the power of standing for what one was meant to stand for & what more can life give us?

Of this passage, the critic Ruth Yeazell bluntly notes, "Even as a mere formula of consolation, this is remarkably empty." The power of "standing for what one was meant to stand for," after all, possesses "a purely rhetorical force, an energy whose ends are wholly undefined."

*

Is illness, in any way, a lesson? Illness is a travesty; illness is shit; illness is not redemptive unless it happens to be for that particular person, for reasons that are not replicable nor should be said to be so. (They usually stem from the sufferer having reached a place in their illness that makes it more bearable than it once was.) In the dark room where I listened to life happen around me when I was sick, I yielded a part of myself forever.

This was an important event, one that keeps on happening in my life. It moves in spiral time around the linear life I sometimes think I live.

It is difficult to look at the shadows of physical suffering clearly, because to do so, I know, is to risk inviting depression, to risk a terrifying hallucination that the world is made of pain. But when I was sick I resolved that if I got better enough to write about my experience, I would not give false assurances. I would not write letters like Alice James' to Fanny, reassuring those around me that my life had not been utterly compromised. Now that I am somewhat better, I can tell you the truth: When I was the sickest, my life was utterly compromised, and my very sense of self was gone. When I was less sick — and there were periods of relief in the suffering — I could step back from the experience and, lying in my bed, take pleasure in the vividness of the blue sky from my window. But I will not repeat falsehoods; I will not say the wisdom and growth mean I wouldn't have it any other way. I would have it the other way.

Sometimes I look at my son and think I have disassociated. I am adrift in a false reality, telling a false story of escape that helps me endure.

But no, I am here, in this world, facing his bright being, feeding his young body that wants more than anything to thrive.

Inside him, his thymus is an education factory, his T-cells are learning what to tag as "germ" and what to "tolerate." The macrophages are hungrily eating the toxins that enter through his skin, his food, his breath. Deep in the bone-marrow the B-cells learn.

I watch him, I put my ear against his heart, and listen to the blood thrum with immunity and vulnerability.

---

Meghan O'Rourke is at work on a book about chronic illness. A recipient of a Guggenheim Fellowship and a Radcliffe Fellowship, she is the editor of the Yale Review and author of the bestselling memoir The Long Goodbye