I try to maintain my cool as I reply that, yes, I’ve been sick, and that, yes, now that I think of it, my father had a sister, Gmar, who died very young of a mysterious illness. He tells me that Gmar has spent many nights and days worrying for me and has done her best to keep me safe. Although my body is clear of danger I am on a different kind of odyssey now—a long, arduous one that will take me deep into the unknown before I will find clarity. As he speaks, goosebumps erupt on my arms. For a moment, I wonder, Did I give him my name? Any other information? Is it my short hair that tipped him off? I don’t think so, but it doesn’t matter to me anymore. Leaning forward in my chair, I want to know more.
The psychic spreads a deck of tarot cards onto the table and invites me to choose. With each card I draw, he sees deeper into me. I will write a book, one that will take me all over the world, he claims. He sees that it will be a struggle for me to commit to a partner, but that, after a long spell of uncertainty, I’ll eventually settle down with a woman—wait, no, a man, he corrects—and then he mutters a bunch of incantations.
I know the psychic is probably telling me what he thinks I want to hear, but I envision my future as a long corridor of closed doors, and with each of his predictions, a door opens and I can see farther ahead. Until now, time for me has been measured in short increments—the biopsy up ahead, the doctor’s appointment on the horizon. Imagining a future is a frightening exercise when your life has been upended; it requires hope, which feels risky, even dangerous. But as the psychic speaks, as he tells me of the long, expansive life that I’m destined to lead, as he presents my future as an inevitability, it starts to seem possible.
“What else?” I ask the psychic, my face open, gullible.
* * *
—
The next day, rain drizzles through the bare trees. The sky is a matte gray, the air wet and heavy. In past cities, I’ve always taken bad weather as an omen that it’s time to continue on—and it’s true, I’m due to go. But even in the chill, with my heater cranked up as the rain spatters the windshield, I find it hard to leave Detroit.
On the road, while thinking about my next stop, my mind flits back to my fourth and final hospital stay for C. diff. Though it’s only been a year, I can’t recall much of anything—I’ve tried to erase those last days in treatment and with Will. But what I remember most clearly is that I felt an overpowering instinct to self-isolate, like a wounded coyote who deserts its pack when it senses the end is near. With the knowledge that Will was preparing to move out of our apartment, I couldn’t stay stoic. I sent my mother home and accepted no visitors. I told everyone I was fine, when in fact I needed the privacy to fall apart.
Bret, whom I’m on my way to see now, was an exception to the no-visitors rule during that period. He was the one who approached me in the waiting room of the transplant clinic, recognizing me from the column. I remember thinking how fortuitous it was that we had ended up seated next to each other that day; it was my first time going to chemo alone, his first time at Sloan Kettering, and the presence of another young patient comforted us both. After that day, we stayed in touch, exchanging occasional emails, phone calls, and medical advice. We only met once more, but in some ways I felt closer and more connected to him than I did to my family and friends. Trauma has a way of dividing your view of the world into two camps: those who get it and those who don’t.
The last time we saw each other, Bret was about to embark on a road trip of his own. His doctors had declared him stable enough to transfer his care to a hospital closer to home, and he and his wife, Aura, were heading back to Chicago. Before leaving for good, the two of them burst through my hospital room door, giddy with possibility. They brought me a silly hat from a gas station—a white beret with glittery netting and glue-on crystals that looked absurd over my short hair. It made me profoundly happy to see Bret doing well, and I took an instant liking to Aura, whose radiance filled the room and, from everything I’d heard, deserved a gold medal in caregiving. I was cheered by their visit, but after they left, I felt down again. Seeing them—so happy together in spite of everything they’d been through—was proof that it was possible for love to survive a prolonged illness. It showed me how things could have worked out differently for me and Will, and raised painful questions about why they didn’t.
* * *
—
On the South Side of Chicago, I pull up to a wood-shingled Victorian located in a quiet neighborhood. Bret gives me a tour, telling me they stretched their budget a year earlier to buy this place, their first home. He’s been trying to keep busy with little renovation projects; he just finished fixing a leak in the roof. They’re hoping for a baby sometime in the near future, he says, but there’s still a lot of work to be done. I admire the hardwood floors and the big bay windows in the living room, the sunlit dining room, and the study, which he tells me they have plans to turn into a nursery. The adultness of it all impresses me—the way they drink gourmet coffee on the back porch, keep houseplants alive, pay a mortgage. They are in their early thirties, just a few years older than me, but their lives seem so much more sophisticated, the opposite of sleeping in campgrounds and on couches, subsisting on gas station coffee and peanut butter and jelly sandwiches.
Aura is a public school social worker, and she’s still at work. Bret tells me about how committed she is to her students, many of whom live in dangerous, low-income neighborhoods. What free time she has, when she isn’t helping care for her husband, is dedicated to organizing education reform initiatives and protests. “My wife works so fucking hard,” Bret says. “The least I can do is to make sure she comes home to a beautiful home and a nice meal.” He gets to work making a cashew-chicken curry, uncorking a bottle of wine, and setting the table for dinner.
From the outside, it is easy to assume Bret and Aura lead a charmed life, but when the three of us sit down to eat, they catch me up on the events of the last year, which include a near-fatal heart attack Bret recently suffered, likely caused by blood vessel damage from the radiation he received during treatment. Bret also has GVHD, which we’ve both struggled with. My case has thankfully been mild and remains under control, except for a rash that sometimes flares on my forehead. His, however, has noticeably worsened since we last saw each other, attacking his lungs and leaving his eyes and skin a violent red.
A filmmaker before, Bret is now on disability. His hands shake from the immunosuppressants, so he can’t hold a camera steady. It isn’t clear when or if he will ever be well enough to return to work. For the foreseeable future he must depend on his wife to take care of him—not only physically, but financially as well. Without health insurance through her job, he would not survive. “I’ve been the recipient of so much support and love and I want desperately to contribute to the world, but I can’t,” he says, his tone suddenly somber.
Though rid of the lymphoma that once plagued his body, Bret is, in many ways, sicker than he’s ever been. “I’m two years out of transplant, and I still feel like hell,” he confesses as we wash dishes after dinner. “My hands ache, my muscles and joints wake me up at five in the morning. And I can’t close the lid on my pillbox because there’s so much medication in there.” This is the cruel irony of medicine: Sometimes the treatments you receive to get better make you worse in the long run, requiring further care, exposing you to yet more complications and side effects. It is a maddening cycle.
* * *
—
“I made it through the transplant, I made it through the heart attack, and I’m so fucking lucky to be alive,” Bret says to me the next afternoon. Rain pelts the windows. We’re listening to Tina Turner on the record player. Oscar and Hodge, their golden retriever–corgi mix, are curled up between us on the couch. “But each time something happens, it’s a little bit harder to come back, you know?”
I nod and murmur yes in agreement, and he continues. “It’s like the late rounds of a boxing match,” he s
ays. “You’re beyond tired and you know that things are probably only going to get worse and yet you have to find some way to keep fighting. But sometimes I can’t help but wonder, What’s the point? So many people get better, then get something deadlier. You had lymphoma and it comes back as leukemia. Your liver’s so overloaded with toxins it’s gonna jump ship any day now.”
“Skin cancer coming down the road, guaranteed!” I jump in, and we both laugh.
Bret and I have both learned the hard way to brace ourselves for bad news; our bodies and thus our lives are capable of implosion at a moment’s notice. In a way, setbacks were easier to deal with when we were still in treatment: We were prepared for the possibility that things could take a turn. But when the body betrays you again and again, it obliterates whatever nascent trust you’ve restored in the universe and your place in it. Each time, it becomes harder to recover your sense of safety. After you’ve had the ceiling cave in on you—whether through illness or some other catastrophe—you don’t assume structural stability. You must learn to live on fault lines.
* * *
—
That night, I begin to think about how porous the border is between the sick and the well. It’s not just people like Bret and me who exist in the wilderness of survivorship. As we live longer and longer, the vast majority of us will travel back and forth across these realms, spending much of our lives somewhere in between. These are the terms of our existence. The idea of striving for some beautiful, perfect state of wellness? It mires us in eternal dissatisfaction, a goal forever out of reach.
To be well now is to learn to accept whatever body and mind I currently have.
31
THE VALUE OF PAIN
THE WAY WE heal does not always look like healing. When I left home forty days ago, I envisioned the road trip as an opportunity to start living again. I thought the farther I drove, the farther I’d get from the hospital hallways I floated down in a cotton gown, mumbling to myself, high on morphine; the farther I’d feel from the room at the Hope Lodge where I waited up in bed for Will, with a cold dread welling in my gut; the farther I’d be from the matchbox apartment on Avenue A where we made a home—and then bulldozed it.
Move on already, I tell myself. Get over it! But the more mileage I put between Will and me, the more preoccupied I become by what happened to us. The unraveling of our relationship seems worse to me after seeing Bret and Aura find a way to thrive together, even plan for a baby, despite the ongoingness of his health struggles.
Everywhere I look these days I see ghosts of Will. Silhouettes of sapling-tall men with square jaws and floppy hair that make my pulse scamper. I wonder, irrationally, if that could really be him sitting at the Formica counter of a mom-and-pop diner in rural Iowa, wolfing down chicken fingers and french fries, or trout fishing on the grassy banks of a river in the Sandhills of Nebraska, where I spent a weekend camping. These apparitions are mostly in my head, but on some days, someone or something invokes his name unexpectedly, and the hidden parts of the past that live inside me rise up to my eyes, an eddying, swirling flood of regret and rage, until I can see nothing else. I’ve spent so much time trying to bury the memory of him, and of us, that a reckoning seems unavoidable.
* * *
—
I am driving through Pine Ridge, one of the poorest Native American reservations in the country, as tumbleweeds scrape along the road. The land is stark and scrubbed. The air is steeped in a stillness that settles around everything like sediment—the pop-up trailers, the shacks made of scrap wood and tarp, the rusted piles of dismembered cars. The night before, I crashed on the living room floor of a ponytailed motorcyclist in Lead, South Dakota. He used to work on this reservation and said it was worth stopping by for a visit. Before I left, he had put me in touch with the staff of Thunder Valley, a community regeneration project on “the rez”—as he and everyone around here call it.
In the vacant parking lot of Thunder Valley, the wind hisses and howls, the cold stinging my face like a slap. I’m met by a young man, a citizen of the Oglala Lakota nation, who introduces himself as the founding director of this place. He’s burly and baby-faced with tawny skin covered in tattoos and a glossy black braid that snakes down his back. “Nick,” he says, giving me a firm handshake and leading me into one of the double-wides that constitute Thunder Valley’s headquarters.
We take a seat at a table and Nick begins to tell me about the work they do here. I’m interested in all of it—the sustainable housing pilot project using a straw-bale building technique, the community garden to help ameliorate the shortage of fresh food on the reservation—but I can’t seem to focus. Something about Nick is familiar, this whole place is familiar, and the synapses in my brain crackle distractingly.
“Have we met before?” I interrupt.
“I was just wondering the same thing,” he says. “What’d you say your name was again?”
I repeat my name, first and last, articulating the slew of vowels more slowly.
Leaning forward a little in our seats, we stare at each other, trying to locate some long-forgotten folder in the filing cabinets of memory. And then it clicks. “Will,” we both say.
* * *
—
It still seems unbelievable. I’ve been trying so hard to block out the past that I’ve come all the way here—to Pine Ridge, to Thunder Valley, to meet Nick—without connecting any of the dots: Will’s father, a documentary filmmaker and reporter, had covered the reservation early on in his career. He’d told me about how, in the late sixties, the Native Americans, fed up with centuries of mistreatment by the federal government, had organized a grassroots effort known as the American Indian Movement and led protests across the country, one of which had culminated in a deadly shootout with two FBI agents at Pine Ridge in 1975. Will’s father was the only non–Native American journalist present during the shootings. He’d been outside Jumping Bull, a ranch on the southwest corner of the rez, when some of the bullets went flying. A stray round hit his pickup, and he’d crouched low behind the truck with a portable tape deck, recording it all for an NPR broadcast.
In my early days in Paris, when Will and I were in the pen pal phase, he had told me about accompanying his father on reporting trips as a kid, which was where he’d befriended Nick and his family. He had even sent me an article about Nick’s work at Thunder Valley. If you ever plan to be in the US for more than a week, we could go visit, he wrote. It’s a part of the country few people ever see. Still in the tentative stages of courtship, I remember being far less interested in the Thunder Valley article than in deciphering Will’s usage of we, which had left me hopeful that he also saw this as a relationship that might continue off the page.
Both Nick and I keep shaking our heads as we piece this all together, utterly dumbfounded by the strangeness of meeting here, today, under entirely unrelated circumstances. He’s heard all about me from Will—about my illness, about my writing—and it turns out I’m even Facebook friends with his sister.
“What a small world,” Nick marvels.
“What a small world,” I echo, less marveling than disturbed by all that I’ve blotted out.
“How’s Will doing anyway?” he asks. “It’s been a minute since we caught up.”
My shoulders slump when I realize Nick doesn’t know. I still have no idea how to tell the story of what happened to Will and me and whenever I try, I can hear the venom creeping into my voice despite my best efforts to keep it at bay. I know it isn’t fair to make Will out to be the villain—it doesn’t account for the countless ways in which he loved me, stood by me, fought to stay—but I’m still unable to narrate it any other way.
“I’m not sure what he’s up to these days,” I finally say, trying to keep my voice steady, but the anger is there, quivering right below the surface.
“Oh,” Nick says. “I had no idea you two split. Man, I’m so sorry.”
“I’m sorry, too.” I mop my eyes with the back of my arm once, hard, before changing the topic. These wiped western skies are too big, the aperture blasted too far open: It all makes me feel overexposed. In extremis, you feel like this, peeled back and vulnerable to the world.
* * *
—
I spend the night on the reservation at a motel called the Lakota Prairie Ranch Resort. My room overlooks a parking lot and has a sticky carpet and fraying bedspread. On the bathroom counter I find a small pile of oil-stained towels next to a laminated card that reads: “For your convenience: PLEASE use these rags to clean spills, shoes, guns.”
I throw the bedspread on the floor, unfurl my sleeping bag over the mattress, and spend the next few hours trying to convince myself I am asleep when, in fact, I am thinking about Will. I remember how, after my diagnosis, Nick had invited Will to bring me to Pine Ridge for a healing ceremony called a Sun Dance. How, when my doctors told me I wasn’t well enough to travel, Will had decided to go to Pine Ridge without me. How it made me angry whenever Will traveled without me. The fact that he could go places and I couldn’t had highlighted the difference between me and him—between me and my peers, between me and all the able-bodied people of the world. I still couldn’t make sense of why some people suffered and others did not, why some lives were heaped in misfortune while others were spared. To be young and sick was unfair, so much so that it had felt unbearable in moments. I had always understood, at least in theory, that to rage against all this was pointless—poisonous. But still, I compared my limitations to the liberties of others. I wanted their freedom so badly that I hated them for it.
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