“You still there?” I ask, even though I know he is gone.
I return to the car deflated. It’s not just that we’ve been out of touch. It’s that we’ve been stuck in a holding pattern. Jon continues to be there for me, hoping I’ll eventually be ready to get more serious. But for a whole year, I’ve been as emotionally available as a bag of rocks. As much as I want to, I don’t know how to let him in.
As a kid, I always thought that when you encountered “the one,” you experienced a mystical click—a knowing, without a doubt, that this was the person for you. I’d had this conviction in my last relationship, at least at the beginning, but my certainty crumbled with time. “If the relationship ended, it’s because it wasn’t right for you,” a friend reassured me, but the premise still troubles me. What if it was and I just fucked it up?
Over the last year, Jon and I have occasionally broached the topic of a future together. I can entertain it as a fun thought experiment of what would our kids look like, but when it comes to actually thinking through the enormity of such a commitment, I panic. Maybe we aren’t right for each other. Maybe I’m not capable of being in a relationship with anyone. Maybe it’s irresponsible for me to consider long-term vows like marriage or children given my likelihood of relapse.
At the root of it is a deeper uncertainty: Maybe I’ll still die.
* * *
—
It’s a sort of uncertainty that Howard Crane, the next person on my list, knows well. As I head south through Ohio’s Amish country toward his city, the landscape opens, becoming more pastoral, more rolling. I pass a man in suspenders and a straw hat steering a horse and buggy, followed by a second, and a third. Otherwise, the road is empty. To my right and left farmland stretches out beyond what the eye can see. I pick up speed, a cloud of dust gathering around my wheels.
As I approach Columbus, my thoughts turn to Howard’s letter, sent three years earlier. An avid reader of The New York Times, he’d written me a long response to my first column, “Facing Cancer in Your 20s,” which was about the various ways in which age becomes an inextricable component of how we experience illness. I gather you are by now in the hospital beginning to undergo the bone marrow transplant that will hopefully restore to you the health and well-being most young people take for granted, he wrote. I am writing as well because I want to share with you my own experience, which though different in many ways, has nonetheless in its uncertainty and liminality, certain parallels with your own.
My column had stirred up decades-old memories of his time as a graduate student, in his early thirties, working on archaeological sites in the Sistan Basin in southwest Afghanistan. As all young people, I thought I was relatively invulnerable, but after two years I suddenly fell ill, he wrote. At first I thought I had a form of malaria, but by the third day I realized that it was very unlikely I would make it out of the Sistan. Without going into detail, through a series of what I can only call incomprehensible events, I made my way the 600 miles back to Kabul, and ultimately spent weeks in a hospital in Germany and later in Boston. When I was released, I was physically the likes of an 80 year old man.
Howard had experienced an array of frightening symptoms—tar-black urine, temporary blindness, and lingering damage to his bone marrow—but, at the time, the doctors were unable to determine a diagnosis. The expectation had been that he wasn’t going to survive. I was so sick that mortality did not frighten me (or perhaps it simply didn’t seem real), but in retrospect I have thought about it a great deal, he wrote. I know it is a cliché that we should live for the day. And I know it is maybe the hardest thing in the world. We always think ahead, make plans, have hopes. And yet, and yet…
The final lines of his letter left me weeping. If I believed in the efficacy of prayer, you would be in mine, he wrote. Not being a believer, I nonetheless want you to know miracles do abound in this life, that the human body is capable of coping with things that seem insuperable.
The sun dips low over a row of beige stucco houses with freshly mowed lawns. A mailbox decorated with two cranes tells me I’ve arrived. I don’t get out of the car right away: I need a few minutes to gather myself. I promised Jon that I would do my due diligence before all of my visits, but it’s been difficult for me to glean any information about Howard beyond what he shared in the letter. I’ve found scholarly articles he published in journals and an Ohio State faculty résumé, but he remains nevertheless a total stranger. Steeling myself, I walk up the front path and ring the doorbell.
Howard is tall and thin, with a snowy beard. He stammers a little as he welcomes me inside. I realize he, too, is nervous, which only makes me more so. “Thank you so much for hosting me,” I say, following him into the foyer.
“I was absolutely floored when I received your letter,” he says. “I never expected to hear from you. So when you said you’d like to visit, it was, for me, something quite extraordinary.” Howard is dressed in a black cashmere sweater and a scarf. If his upper half says dignified intellectual, his lower half, with flip-flops and jeans slung low on his hipbones, says child of the sixties.
“My wife, Meral, will be with us soon,” he tells me, explaining that she is meeting with a patient in her home office. “In the meantime, let me show you to where you’ll be staying.”
He leads me down a steep flight of rickety stairs, and when we reach the bottom step, my eyes drift around the basement. It is spacious but crammed full. Hand-painted picket signs protesting the Iraq War. Towering stacks of what appear to be every copy of The New York Times Magazine ever published. Wood-paneled walls covered in dozens of newspaper clippings and framed photographs. A half dozen chairs, and a large pullout couch with batik throw pillows where Oscar and I will sleep.
“We’re pack rats,” Howard says, fluttering his hands around the room, “but I do hope you’ll find it comfortable.” The basement, he tells me, is where Meral holds support groups for her patients. Howard’s entire demeanor changes as he talks about her—the stammer falls away, and his rheumy eyes fill with pride. “She’s one of the preeminent therapists for transgender people in the country,” he says. “She grew up in Turkey in the forties and fifties, in an environment of much more scarcity than we are familiar with here in America. When she was in primary school, they could only write in pencil so that when they finished an assignment, they could erase it and use their paper over again. These things simply weren’t available in Turkey then. Now we live in this plethora of stuff, but she still has a very hard time throwing anything away. I do, too. Clearly!”
As we’re speaking, Meral, a striking woman dressed all in black with a leopard-print scarf, descends the steps. She’s more assertive and extroverted than Howard, flinging her arms around me, clucking at him for forgetting to offer me a drink. “My Howard has been looking forward to your visit for weeks,” she says with a faint trace of an accent. “We both have. Now, shall we go to dinner? You must be starving, poor thing. There’s a very nice Turkish restaurant not too far away. Howard will drive.”
* * *
—
By the time the appetizers arrive, we have fallen into a good conversational groove. Gracious and inquisitive, Meral and Howard pepper me with questions. They are pleased to discover that I, too, have spent time in the Middle East. I tell them about studying abroad in Egypt, about my research on women’s rights in postcolonial North Africa, and about my family in Tunisia. People rarely ask about my pre-illness interests, and as I recount long-forgotten pastimes, I feel as though I am touring someone else’s life.
There’s an old Tunisian saying that your entire life is inscribed on your forehead but it’s as though everything that came before my diagnosis has been scrubbed from mine. I don’t know how it happened, or if it could have been prevented, but at some point in the last few years my entire existence, my identity, even my career, became linked to the worst thing that ever happened to me. My scope of interests s
hrank in direct proportion to my world. A year out of treatment, illness continues to dominate the narrative and seems to squeeze out the possibilities of anything else.
* * *
—
The next morning, I join Meral and Howard in the living room. We lounge around on the couch and watch the news. Their cat, an old tabby, curls up on Howard’s lap. As political pundits discuss the Obama administration’s decision to keep troops in Afghanistan, Howard scowls, tsking and grumbling that the world is going to hell. “Time to write another op-ed,” he says.
“Have you always been a big letter writer?” I ask.
“I guess you could call it my hobby,” he says. He tells me that he first started writing letters when he met Meral. They were apart for the first two years of their relationship—she was just out of high school and living in Berkeley; he was attending college three thousand miles away in Cambridge. “Telephoning cost an arm and a leg and we didn’t have the money to do those sorts of things. A three-cent postage letter was about what we could afford.”
“Each of us wrote a letter a day,” Meral chimes in. “Sometimes two letters a day.”
“I don’t know how we filled them up,” Howard says, shaking his head in wonder. “One day I got a letter from her that was twenty-seven pages long! What could possibly have happened in twenty-four hours to fill twenty-seven pages?”
Howard and Meral had continued letter writing over the years whenever they were apart, including during his days in Afghanistan. From a hospital bed in Kabul, a young Howard had dictated what he believed to be a last letter to Meral, expecting never to see her again. In fact, he went on to make an astounding recovery, but it wasn’t the last time he would find himself grappling with mortality. Eventually, doctors diagnosed him with common variable immunodeficiency. He, like me, suffers from a compromised immune system, and over the last decades has experienced an uninterrupted chain of infections, some of them life-threatening. But Howard, unlike me, hasn’t allowed any of it to keep him from loving and being loved. He hasn’t just embraced uncertainty, he’s constructed a whole life inside of it, building and rebuilding as many times as has been necessary. In spite of his health, he got married, had two kids, and pursued a career that he found infinitely fascinating.
It has not been without difficulties, of course. He tells me about receiving a prestigious appointment as chair of the art history department at Ohio State, only to step down five years later because he was so unwell. And yet, Howard persisted in finding workarounds for his limitations. “Winter was the worst season for me,” Howard said, explaining that he would frequently get pneumonia. “I had to hibernate, so I started teaching only in the warmer months.”
Howard is retired, but spends his days reading, taking long walks in the nearby park, and firing off an occasional letter to the editor. He and Meral are grandparents now. They recently celebrated their fiftieth wedding anniversary. And once a week they take ballroom dancing classes together.
When I ask if he has guidance for me, he deflects, telling me to ask Meral, the therapist, instead. “She’s quite directive,” he says. “She doesn’t believe in people magically finding their own way, because they often don’t. They end up spending years—shall I use a cuss word?—mindfucking,” he says, with a giggle.
“Come on, I’m not letting you off that easily,” I press.
A moment passes, and Howard relents. “Slowly, with enough patience and persistence, you’ll become immersed in life again and, let’s face it, life can be so good. But I think it’s most important to find someone who has the wherewithal to stick it out with you. I owe more to my wife—” His voice catches. “Well, what I owe her, it’s beyond expression.”
“Sounds like I need to find myself a Meral,” I say.
Seeing them together makes me want to open myself up to the future, but hard as I try, I still can’t imagine myself growing old, alone or with anyone else. To learn to swim in the ocean of not-knowing—this is my constant work. I can’t know if there is a rogue cancer cell lurking somewhere in my marrow. I can’t predict if my body will scuttle commitments to myself or to others. I’m not even sure I want to settle down in a stable, more conventional way. But I’m beginning to understand this: We never know. Life is a foray into mystery.
30
WRITTEN ON THE SKIN
IT’S EARLY MORNING in Eastern Market, an industrial neighborhood in Detroit. I’m staying with Nitasha, a young woman in her early thirties with long black curls and a witchy, ethereal quality. A digital marketer for a pharmacy by day, artist by night, and Frida Kahlo aficionada at all hours, she’s hosting me in a large open loft with twenty-foot ceilings and brick walls covered in her paintings. When I arrived last night, she was simmering homemade harissa on the stove in honor of my Tunisian heritage. As we tore off chunks of bread and dipped them into the spicy chili paste, she told me that she’d first learned of me years earlier, through following Melissa online. “I saw a portrait she painted of you and was so moved by your friendship,” she said. Partially inspired by our struggles, she’s working on a plan to use her loft as an exhibition space for what she’s calling “The Museum of Healing.” It will showcase works by local artists exploring topics related to disease, medicine, and recovery.
Our first stop this morning is the farmers market, only a few blocks away. Nitasha leads me through open-air stalls selling mason jars of pickles, luscious heads of lettuce, and artisanal soaps made of goat milk. As we wander, she tells me about dermatographism, a skin condition she’s lived with since she was eight. She, too, knows what it’s like to be plagued by an itch: “Itching and itching. And even more itching,” she says, “until I wish I could unzip my own skin!” Even the most minor scratches morph into welts that last a half hour.
But Nitasha, like Frida Kahlo, has turned her predicament into art. She traces a few arcs idly on her forearm with a fingernail and I watch as they thicken into red icing. She says she draws on her skin this way—sometimes making detailed geometric patterns, sometimes written messages—then culls inspiration from the results. In one installation piece called Skin Suit, she experimented with leaving rusty objects on fabric, and layered the stains to create patterns, mimicking the appearance of skin under a magnifying glass. “I see my body as an extension of my sketchbook,” she tells me as we exit the hipster market and begin wandering along the vacant streets, passing warehouses and abandoned buildings. “It also comes in handy for writing down phone numbers,” she adds, laughing.
Later that afternoon, Nitasha takes me for a drive around the city. We pass an abandoned house where a tree’s branches have begun sprouting through its walls. We come across vacant lots that urban farmers have turned into homesteads of organic produce. We meander along the sidewalks of the Heidelberg Project, a neighborhood where neglected homes have been transformed into public art pieces painted in psychedelic polka dots with lawn sculptures made from mounds of dolls and other found objects. We stop in front of the brick façade of a warehouse, spray-painted in clouds of tangerine and aquamarine blue. On the bottom right-hand corner, there is an inscription by the artist Fel3000ft that reads like a rallying cry for rebuilding from any catastrophe:
We have been considered many things: A city in decay, a city in distress and without hope. However, we have never given up and we never say die. We are born fighters, we rise from the ashes. We are a community that believes in our future despite whatever anyone throws against us. We are Detroit!
I am learning to read the moods of cities, and perhaps more than anywhere else so far, I relate to Detroit, a city of many narratives. A place powered by the auto industry that powered America. A place inscribed by segregation, but also by such promise that tens of thousands of black Americans settled there during the Great Migration. A place that nearly died when the car companies downsized and left, but didn’t die, refuses to die. A place where the future is painted upon the p
alimpsest of a painful past. Upon skin that rears up in welts, angry and beautiful—a beauty that transcends anger but also wouldn’t be possible without it. And isn’t that how it always goes, catastrophe forcing reinvention?
* * *
—
Before I leave Detroit, Nitasha takes me to one more place: a psychic’s storefront with a sign in the window advertising tarot card and tea leaf readings. She insists this psychic is not a fraud but a true clairvoyant whose specialty is in healing damaged souls. I’ve never done anything like this before, and the logical part of me thinks it’s a waste. But the part of me that wants to dispel the uncertainty in my life—to conjure the illusion of knowing what’s going to happen to me—can’t resist.
Behind the modest storefront is an incense-fogged room lined with shelves of crystals, oils, and herbs for sale. The psychic, a young man dressed in a skintight, rhinestone-encrusted T-shirt and acid-washed jeans, leads me to the back. Behind a heavy curtain, we sit facing each other, my hands in his hands, our faces bathed in the flickering light of votive candles. Over the next few minutes, his body begins to shake and his eyes roll into the back of his head, seized by what I can only assume are “visions.” I look on skeptically, already regretting the crisp fifty I’ll have to fork over at the end of this.
When the psychic opens his eyes, he tells me he’s been visited by an ancestor—a woman, perhaps an aunt, on the paternal side of my family. He tilts his head back as if to take a long sip of water, lips opening and closing, eyelids twitching with the ferocity of a man possessed. When he reopens his eyes he tells me this aunt of mine was very sick before she died. Then he asks if I, too, have been sick.
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