My dog smiles that wide pit bull smile as he pads along the park’s gravel path. He’s walked this path a hundred times before, but it’s no less exciting for that. It’s so easy to make him happy, to serve him what he needs, when I have the energy to do it. You’re gonna have to serve somebody, Bob Dylan sang. My father likes to quote this lyric when making the point that we need to be useful in this world, that we need to be needed.
Columbus, Georgia, where my husband is stationed with the Army, is an active infantry town: The neighborhood crew down here at the park is made up of power walkers, runners, men doing pull ups on the old school park equipment. Their reliable presence is a comfort after weekends like these. It makes me feel like I am part of a working organism, a community that might even need me. My dog wags his tail as a young woman jogs by us. I’ve seen her before. She is broad-shouldered and strong, her gaze focused on the distance, on some pre-determined goal only she can see. She looks not just at ease with being alive, but like maybe she’s even mastered the job.
On my headphones, Terry Gross is interviewing Toni Morrison about her new book. It’s not long before Morrison starts ruminating on her personal life, though, talking about what it’s like to be old and in pain. At 84, she’s not terribly optimistic about life. “I regret everything,” she says of the mistakes she made while rearing her children. Her frankness is disarming. I realize, as she talks, that this refusal to say anything truly hopeful is not what we expect of our sage thinkers and leaders. But it’s comforting to hear Morrison—a giant of literature so immense she belongs to a kind of American mythology—reveal that she spends much of her time mulling over past mistakes. “Maybe I’m just depressed,” she says, and then laughs, wheezing. Gross, uncharacteristically, says nothing.
Morrison is confined, mostly, to a wheelchair due to back pain that surgery, regretfully, did not fix. “There is this boredom or the absence of something to do,” she says carefully, each word so deliberate and slow it feels as though she’s reading poetry. “And I don’t wash dishes and I don’t wash clothes and I don’t clean my house—somebody else does that. So there’s this void….What you can pull, if you’re an irritable old lady, into that void, is every misstep, wrong word: Why didn’t you visit? Why didn’t you do this?”
At 31, I’m decades away from being a self-described irritable old lady, and I’m not wheelchair-bound, like Morrison. But I’ve spent my adulthood wrestling with chronic illness and pain, so I know something about that void she is talking about, that dark space that opens up when you don’t have the stuff of life to fill it. During my worst flares, like this past weekend, when I can’t tend to my life—my sink piled with dishes, my laundry strewn down the hallway, coffee grounds caking the kitchen counter—the void is so overwhelming that it has, almost, a discernible shape. I can practically touch it in the dark of my bedroom. It is dangerously easy to enter.
I have a couple of autoimmune conditions whose main symptoms are pain and physical and mental exhaustion. My primary condition—the one that’s always with me—is a bladder syndrome called Interstitial Cystitis, which causes pain in my bladder, pelvis, and legs. I’m never without any of these syndromes, but they wax and wane. Sometimes they’re just the white noise of my life; other times, they reach a decibel that’s impossible to ignore. I’ve been in the midst of a bad flare for a couple weeks, and this one has been disorienting, with new symptoms rearing their heads: electric shocks striking me in the feet; blurred, dimmed vision that makes driving feel like a gamble; numbness in my legs.
I’ve become accustomed to living with exhaustion and pain, but it’s strange, even scary, to experience these new, seemingly neurological symptoms. The last time I felt this blindsided by my body was ten years ago. My Interstitial Cystitis started when I was 17, but I wasn’t diagnosed until I was 21, when what had felt like a four-year-long urinary tract infection became something else: a throbbing, sharp pain moving through my lower body, leaving me dizzy, unable to stand for long hours at my waitressing job. I felt then what I’m feeling this weekend: this has a bottom I can’t see. Now, with a little more experience, I know what comes with that new bottom: doctors visits and enormous blood draws and medications with little effect—except for all those lovely side effects. Diagnoses that are fancy ways of saying we don’t know why. A “syndrome,” I’ve learned, is mostly a doctor’s shrug of the shoulders.
Finding this new bottom means that my thoughts have been particularly desperate this weekend: backward-looking, self-dwelling. Morrison’s own thoughts these days orient themselves inward too. She especially dwells on the mistakes she made parenting. “It’s not profound regret,” she tells Gross. “It’s just a wiping up of tiny little messes that you didn’t recognize as messes when they were going on.” In the midst of raising her sons, she didn’t worry about failure. “I always thought I was able and competent while rearing them,” she says. I imagine this is because she didn’t have time to tend to her regret, to cultivate it like she does now. That is the terrible thing that the slowness of pain gives you: time. We all crave more, but too much is dangerous. The most acute pain—the kind a woman experiences in the throes of giving birth—is capable of blotting thought out completely, if only momentarily. That must be a kind of mercy. Consistent, long-term pain, the kind that Morrison suffers in her back—and that keeps her from standing for longer than six minutes—allows for a steady stream of thoughts, a ruthless spinning of the mind.
To our minds, this spinning feels akin to accomplishing something, I think. If we can’t tend to our lives in the physical realm, the mind kicks in double-time, and this weekend, my husband away at an Army training for the month, I’ve spent the hours in my bed accomplishing the task of going over errors big and small. I check them off like items on a to-do list: ways I’ve burdened my husband with impossible expectations; friends I’ve failed to call back; writing assignments I’ve left unfinished; jobs I’ve quit or underperformed at; bad impressions I’ve made; ambitions I’ve curtailed—all the ways I’ve failed to live a life I envisioned. These are the kind of terrifically unhelpful thoughts that surface inside the void, or at the very edge of it. Truly boring stuff, the kind I find too tedious to even bring up to a therapist. But, alone, in the dark, that doesn’t stop me from going there. When our bodies shun us to the back rooms of the world, away from colleagues and lovers and friends, we have only ourselves and our reckless, pulsing imaginations: This is where regret lives. Not big, dramatic regret, not those fatal mistakes for which we seek absolution, but the mundane, everyday regrets that go unnoticed until it’s too late, the ones that make up the unalterable course of our lives. The tiny little messes.
I generally know better than to go down these paths, but the tricky thing about chronic pain is that it blurs your mind, weakening not just your body but also your psyche, leaving it with just enough strength to follow the path of least resistance, to retreat to the most dimly-lit hiding place. There, I find myself clinging to people, dreams I’ve lost, plot lines that didn’t go the way I intended. It’s hard to see sometimes how or why I lost them, whether my health or just the natural course of life was to blame, and whether there is, really, at this point, a decipherable division between the two.
In grad school four years ago, one of my professors said of my reporting projects, “When you really hit it, you hit it all the way out of the park. But other times, it just kind of dribbles.” He laughed good-naturedly as he mimed a tennis ball lamely bouncing across his mahogany desk. I sat across from him, laughing too. It was true. I didn’t mention at the time the low-burning fire of pain inside me. It honestly didn’t even cross my mind. I just thought: That’s me, inconsistent. My central character flaw. I’d never wanted to be defined by my physical limitations, so I hid them, for years, even from myself. But this did not alter the fact that they had changed me, made me, even.
We tend to think of illness as an unwelcome visitor, someone who comes and goes from a household as they please. Morrison says she feels “put upon,” “under attack” by her back pain. And in the wake of the unsuccessful back operation, she is left with a “floating anger.” I know that anger well; it surges up at the beginning of every bad flare: Why can’t you leave me alone? But over time, for me, something subtle has happened: The guest has become a part of the household’s framework. After 13 years, my illnesses have become a fundamental part of me, as foundational as my childhood memories.
For a long time, I tried to ignore my limitations. Throughout my 20s I lived hard and haphazardly, and then would drop out of life when I couldn’t keep up with the pace I’d set for myself. I stayed out late drinking with friends; completed a demanding graduate school program; embarked on a shoestring four-month trip through Indonesia; worked long weeks at an editing job in Manhattan; moved constantly from one apartment to the next. I grew up on the poetry of the Romantics, on the concept of sucking the marrow out of life, and I was damned if illness would stop me from living out that ideal. But, eventually, it always did. I came home from trips exhausted, I left my jobs in shambles, I finished graduate school feeling wrecked. It seemed to me then—and still does now—that the world gives the sick two primary options: overcome it or wallow in it and be forgotten. I did not want to be forgotten by the world. I still don’t. In illness, Virginia Woolf wrote, “We cease to be soldiers in the army of the upright; we become deserters.” That is the threat of long-term sickness: that in your breaks from the world—and I have taken many, short and long—it will stop needing you.
My dog tugs on his leash to sniff some invisible spot on the park’s gravel path, his paws suddenly planted. He needs me no matter what shape I’m in. But the rest of the world does not always have the time—or interest—to stop and listen. We like our sick or our elderly to be stoic and brave, for there’s something inconveniencing, almost indecent about baldly sharing the struggles of long-term physical pain, as I’m doing in this essay. Even Gross seems a little uncomfortable listening to Morrison admit that she hates her body. I’ve spent years trying to figure out why it is that long-term illness makes most people who are well so uneasy. Perhaps it’s because real sympathy is often born of experience. It’s scary and strange to go where we haven’t been before. It takes a certain amount of courage to cross the bridge to another human being who is suffering something we have not. There’s so much we don’t know: How far will the journey be? What will the world look like on the other side? A more generous part of me wonders if maybe, too, the discomfort comes from a sense of helplessness. People want to fix what is wrong. Incurable pain and illness remind us of our lack of control and authority in a universe that operates on an axis all its own, one that doesn’t give a damn about how we feel and what we want.
My husband thought he could help cure me when we first got together. One of the first things he said to me was, “I’m going to help you get better.” I didn’t believe this was possible. My conditions, doctors said, were manageable, not curable. But his optimism was a kind of medicine itself, an antidote to the pain. He’s never admitted this, but I imagine it’s been dispiriting to realize, over time, that even he could not find a way to banish it. Earlier today, he called from Yuma, Arizona, where he’s training. I was sitting on the toilet, the shower curtain across from me a blur through my tears, the bath water running.
“You sound like you’re in rough shape,” he said, the phone on speaker, as he was driving back to his hotel from the gym.
“I am in rough shape,” I said. I was, at this point, in full-blown loathing, one foot in the void. I was having a hard time hearing him, and he felt a world away, on another planet where people lift weight at the gym and live full lives on the weekend. I wanted to punish him for both his freedom and distance.
“You sound weird,” I said. “Like you’re following a script or something.”
He paused, then inhaled sharply. “I’m going to call you back in thirty minutes,” he said. His voice was tight. He was trying not to get mad. We got off the phone and he rang me twenty minutes later when he was back in his hotel room, his voice velvety and close against the speaker this time. I apologized.
“I would do anything to take away your physical struggles,” he said. “You know that.”
“I know,” I said. And for a moment, I felt my mind still, released from its spinning.
Now, my dog and I pass the cement stairs that lead up to the high school across from the park, and I feel a little wistful. We run up them, occasionally, when I’m feeling well enough, but my joints and muscles are tired and achy. I think about my husband’s words, their grace. I’m reminded of Van Gogh’s Letters to Theo, which I read feverishly when I was first diagnosed with Interstitial Cystitis and had to leave my makeshift life in New York, taking my first and longest break from the world:
And men are often prevented by circumstances from doing things, a prisoner in I do not know what horrible, horrible, most horrible cage… Do you know what frees one from this captivity? It is every deep, serious affection. Being friends, being brothers, love, that is what opens the prison by supreme power, by some magic forces.
Most of the time, my husband’s sympathy is not so explicit—I would do anything—and, for that, I’m actually grateful. Illness is a solo journey, and no one can truly be with me every step of the way. As Woolf also wrote: “Here we go alone, and like it better so. Always to have sympathy, always to be accompanied, always to be understood would be intolerable.” What my husband does give me most of the time—what I recognize as both an enormous gift and as an essential ingredient to my survival, like water or air—is a kind of quiet consideration. He allows my hurts and needs to be seamlessly incorporated into our everyday together, never losing patience with getting on and off the freeway for constant bathroom stops on road trips, running a bath for me at the end of the day without my asking, making adjustments even in sex with such subtlety I don’t notice until later that he’s done so. Most of the time, what I need is to feel normal; I need for the pain killers, new diets, last minute cancellations, and doctors’ appointments crowding my calendar to feel both important and insignificant, as much a part of my life as walking the dog and editing a manuscript and teaching poetry to kids. There is freedom in this.
Thankfully, there are ways to release ourselves from our cages. When Morrison writes, she tells Gross, she is free from pain. She calls it her “big protection.” “Nothing matters more in the world or in my body or anywhere when I’m writing,” she says. I love this idea; it’s romantic to me. Gross, too, seems to like it. It’s a break in the talk from regret and voids and feeling put upon. It’s that almost magical overcoming of obstacles we all want from our heroes. I do know what she means. When I write, I have moments when I become so absorbed that everything else recedes. But much of the time, my experience is less magical. Often, my body won’t let itself be ignored: I have to get up to go to the bathroom every twenty minutes and stretch my legs when they begin to lock up. A car crash from a year and a half ago that resulted in a spinal fusion left me with neck and shoulder pain that increases the longer I spend at my desk. Writing time, it’s clear, costs me something. Worsened pain for the turn of a phrase, the insight that makes the world fall into place: a trade between body and mind.
I’m struck now, as a breeze scatters dry leaves into the air, that everything is a trade. Life, for everyone, is a kind of calculus: What will I give up for this gain? A meaningful life, it turns out, always costs us, whether we’re healthy or not: marriages, babies, careers, friendships. When we make sacrifices, though, it can be hard to take in the magnitude of what we gain. This three-mile walk, for instance: In exchange for tonight’s aches, I’m getting not just fresh air or the sound of the water moving quietly over the creek’s rocks. I’m also getting a new mind, a clear, reliable lens through which to see myself and my place in the world. My thoughts have quieted. My own floating anger, my whys and should’ves and could’ves are distant echoes.
This walk is not just a walk but a new vantage point, and there is something as magical in that as Morrison’s experience of writing. That’s planetary travel in the span of an hour. When I’m at the edge of the void, I tend to look back at my 20s and believe that I lived full-speed because I was romantic and ambitious. This is partially true. But I can see now that I often lived with urgency because I had to: waitressing long hours while I freelanced on the side; standing in long lines at free health clinics; working through college to support myself. Going it alone. I can see now how the slowness of my current pace is a privilege. I have a home, government health insurance, a husband who, after eight years, still crosses the bridge to my pain even when he’s tired. I have the luxury to consciously make small trades every day, to negotiate and build a life around the void: to work from home and teach part-time. To build a protected space in which to write—something I’d never imagined having. I’m not overcoming, and I’m not being forgotten by the world, either. I’m just living.
But when the sun has fallen and I’m back home, the delicate cadence of Morrison’s voice long gone, I’ll feel the aftereffects of the walk: the swelling joints, the burning in my bladder and legs. The void will be right where I left it, ready for me to dip back in, to mull and wallow. But there will also be my dog, asleep on the couch, sated by the walk. There will be the memory of my husband’s voice close in my ear, the bath I’ll run for myself tonight, my hand cutting through the water to make sure the temperature is right. This is what coexists with the void: the life I choose to return to, again and again.
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This is a stunning and deliberate essay along a path few of us have to follow. But so nicely done that we enjoy the scenery and the pain.
Thank you so much for sharing this moving and important piece, Simone. I know how isolating and scary it can be to wade through the unknown waters of chronic illness; it means the world to have others share their stories, though, so thank you. And know that you aren’t alone.
You have so articulately and eloquently expressed a life so difficult to describe to others. I too live that life, in fact you have written words, expressed thoughts, symptoms, and experiences identical to my own….my journey has been from age 29 to 65, thus far. Thank you for your honesty. May there be more days of “white noise” and less days at the bottom of the pit.
Chronic illness naturally pulls us into introspection because it isolates us. We are utterly alone but because of that aloneness we have the “luxury” of gaining perspective. We don’t fit in with “normal” people because normal people do not have to regularly shut down and attempt to detach their bodies from their minds. Physical suffering bends and reshapes the mind. Our bodies may be weak and easily broken but our minds can strive to be strong and resilient.
I stumbled across your blog in search of inspiration for writing. And after reading I feel like I’ve gained so much more. Inconsistencies have seemed drive my existence. I always find that I am climbing this ladder haphazardly and inconsistently developing but evolving, nonetheless. Into what, I am not sure. I cannot relate, however, to your pain. And for that reason I feel a little silly commenting. But I thank you for opening my mind a little more.
Yes, good stuff Simone. So well written and composed with convincing authority. I have a son who lives with chronic pain. I admire his valiant effort to return to “… what coexists with the void.” Thank you for articulating your thoughts.
I started writing as a distraction. By posting an article I wrote ‘just for me’, I found your article that I feel you wrote ‘just for me’. So many things that you described so perfectly, made my heart beat a little faster.
“You’re going to have to serve somebody”
I know pain can make you feel useless.
Thank you for serving me.
As a lifelong sufferer of two chronic illnesses, I relate to your pain and have learned a lot from reading your experiences. You articulate so much of my struggle. My long experience of being sidelined and stymied by illnesses -and furious about it to boot – ultimately brought me to faith in Christ and in the Catholic Church. Why that? Here is a God who suffers with us, dies with us and allows us to unite our sufferings, even the most prosaic and mundane, to the cross – I found that in this way no pain is ever wasted and a body/heart in agony can be a furnace of joy and healing of self and others. I found that a balm to the spiraling thoughts so familiar to me and which you describe so well – could be prayer. It makes meaning out of suffering. I still struggle with pain and faith and rail against it. Yet, in my experience, when I am most ill is exactly when I am most loved. The vulnerability that is inherent in illness can be the most beautiful pathway to surrender to God. As a former agnostic, no one was more surprised that I was that this was where chronic pain led me.
Thank you so much for this honest and beautiful portrayal of we who suffer. To your courage, life and healing.
I have a daughter dealing with something like this, endometriosis as well as having broken her back has left her wondering what’s left that she can do with her life. I think she knows that to withdraw is to make herself weaker in the long run. She’s turned to Yoga and Buddhism and feels that it helps. All I can tell her as an old man with many breaks and bruises of my own is that when you are occupied doing something productive you are succeeding at every level, no matter how you feel, and the distraction moves the pain a step away. Having read you’re story I can say you are succeeding.