The Love of a Thousand Muskoxen: Grieving a Love Lost to Time and Sickness

Years after spending a romantic month alone with a young photographer, Stephanie Land learns of his crippling chronic disease–and gets a glimpse of how much she meant to him.

Stephanie Land | Longreads | October 2016 | 14 minutes (3,488 words)

 

At two in the morning in mid-July, I sat cross-legged, my hands full of lichen, waiting for the caribou to come.

It was my second to last summer in Fairbanks, Alaska, and the light outside was what most people associate with dawn. I wore shorts and a hooded sweatshirt. I sat as still as possible. When the small herd started towards me, I looked back at Whitney for reassurance. He stood about twenty feet behind me in the fenced enclosure, hips cocked to one side, his frame lanky and thin despite his baggy pants and sweatshirt. When he smirked at me, something shifted in my chest.

He was just a teenager—19 and about to begin his second year in a private college on the east coast. I was five years older. I felt so much wiser. We were two weeks into the four that we would spend together. The finiteness of those days gave us freedom to be inseparable without losing ourselves in each other. After all, it was impractical—I knew that in two weeks, I would drop him off at the airport, that I would wake up the next morning with an aching chest and an empty bed. But for the short time before he left, I could love him unabashedly and feel no shame.

Before Whitney and I met, my then-boyfriend Andrew spoke often of this photography intern—this innocent, odd “kid”— from California—who worked in his department at the University of Alaska Fairbanks. When the intern, Whitney, invited him to a barbecue, I went along in tow.

Within one month of meeting Andrew, he had asked me to marry him. I had fallen quickly into the romance and moved in with him. But I became unnerved by his persistence, by the pace of our relationship, by how little we had in common. And so when Andrew left the barbecue that night, I stayed.

I remember feeling immediately pulled in by Whitney’s calm presence and the intensity of his blue eyes. I had never experienced a connection as powerful or instantaneous. That night after Andrew left, Whitney and I spent hours lying together in a bottom bunkbed, whispering to one another and telling secrets. Even when we did not speak or touch, the space between us was alive, like static.

The next day, I took him hiking. We sat on top of a hill, overlooking the rolling mountains of the Tanana Valley, when Andrew called my cell phone. “Where are you?” he asked. I heard the wince in his voice.

“It’s over, Andrew,” I said, the heel of my shoe kicking against the ground. “I can’t be with you anymore.”

Whitney stood ten feet from me, facing towards the mountains, staring at something that I couldn’t see. Over the next four weeks, I noticed his ability to see the smallest details, to focus in on things that I did not notice until he showed me. He found beauty in everything—the rise of a burned spruce tree, the surface of a scummy pond. On the way home from the grocery store, hungry and anxious to make dinner, he’d suddenly say, “Stephanie, pull over.” And I would.

Through the windshield, I would watch as he stood in front of the car, gazing intently at something in the distance. “I need to come back in the morning with the camera,” he would say, climbing back into the passenger seat.

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Years later, Whitney would graduate college with a fine arts degree in photography. He would win dozens of awards for his work. Somewhere still in his files are hundreds of photographs of me in various stages of dress—standing in old gold mining equipment, on top of rusted cars in a junk yard, adorned with nothing but flowers. For those few weeks, I was his muse.

* * *

The hooves of caribou are not really hooves. They’re air-filled pads that cushion their nimble toes, supporting their heavy bodies as they walk through the deep snow. That summer evening, as I sat with my hands outstretched, four full-sized caribou clicked towards me, each the size of a small horse. Behind me, Whitney shook the burlap sack labeled “caribou snacks” and filled with lichen, which the caribou devoured like candy.

One by one, they click click clicked up to me, gently nibbling the plant from my hands. I resisted the urge to lean over and rub my cheek against their fuzzy, blond noses. When they breathed out, it smelled like the beginning of autumn. Above me were the wreaths of antlers, each covered with fuzz the color of red mud. I held my breath, afraid of spooking them.

After Whitney left Alaska, I wrote him letters constantly. I sent some of them and kept others. I described the chest pains I felt when I thought of him, the ache of missing him. Every so often, I’d answer the phone and hear his voice. He would call to tell me about the small villages in Jamaica where he had lived for a time, or what it was like to watch manatees swim beneath a row boat. He seemed worlds away.

In my own life, things had a way of spinning. I moved to Port Townsend, Washington State, endured bad relationships, became pregnant unexpectedly and had the baby. Throughout all of it, Whitney would sometimes enter my mind, and I would talk to him as though he were there. I remembered how it felt to let myself fall for him without any hesitation, despite knowing that he did not want to be involved with anyone, that he wanted to spend his life traveling, that he considered nature to be his wife.

In the months after having the baby, when my daughter’s father and I were fighting constantly, I emailed Whitney. “I don’t know why I’m writing you,” I told him. “You hardly even know me.”

When he wrote back, he said, “I know you, Stephanie. I know you.”

For years that was enough. Somewhere out there in the world was a person who knew me better than anyone else. He saw me for who I was. During my saddest moments, I’d replay scenes with him. In my mind, I returned to Alaska and to Whitney, to the enclosure where I crouched in front of the caribou, and I would remember who I was. Through years of emotional abuse, raising my daughter on my own, and homelessness, I fought to maintain the person I had been with Whitney.

* * *

Ten years ago, Whitney began to get sick. At first, it seemed a persistent flu or cold that would wipe him out completely. Throughout the beginning of his illness, he was determined to keep his photography business going. He was even hired as a photographer by the Obama administration, but when his health continued to decline, he had to resign. He moved in with his parents, and gradually became so sick that he couldn’t speak or get out of bed.

I knew he was ill, but I did not think he was dying. He kept a website with updates about his condition. He used the term myalgic encephalomyelitis, more commonly referred to as chronic fatigue syndrome. I thought he’d come out of it over time. I thought he’d get better. And then I stopped hearing from him. The messages he sent with links to John Prine songs and little red hearts stopped appearing.

A year and a half later, I found a photo in a Facebook group set up to raise awareness about his disease. In the photo, he was on a stretcher, about to enter the open door of an ambulance. His cheekbones were sunken; his face looked ashen and gray. He didn’t look alive. He lay on his back, staring up at the sky for the first time in years.

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When I found the photograph, I fumbled through feelings of grief, loss, and guilt. I should have kept in better contact. I should have tried harder. I should have listened. I should have told him I loved him more.

Through the Facebook group, I contacted his mom to tell her I wanted to help. As a writer, I wanted to tell his story. I wanted to scream to the world that people are dying from a disease that is largely considered “imaginary.” Over the next few weeks, his mom and I spent hours talking. We shared stories of Whitney before he had become sick. I asked her about his childhood, and what he had been like at the time I knew him. I asked if he’d ever mentioned me, and she said she remembered him saying something about a girl in Alaska.

After Whitney left Fairbanks, and even while he was still there, I knew I was in love with him, but I brushed it off as though it were a fling. I was sure that he would leave and forget about me, and while I knew that he had been fully present and enlightened during our time together, I never expected him to have longer-kept feelings for me. We traded music and favorite sweatshirts, and while we both held to our shared memories, we went our separate ways nonetheless.

When his sister sent me a snapshot of Whitney wearing the sweatshirt I had given him, I felt a sort of explosion, or implosion in my chest. She wrote that it was strange for him to be so attached to an article of clothing, given that he had been against the concept of material possessions. “The only thing he cherished was his cameras,” she wrote, and then told me that he had confided in her about the girl in Alaska with whom he had switched sweatshirts. “I knew at my young age that she must have been incredibly important… He wore it every day.”

This explosion of loss echoed for a long time. I spent days staring at the picture, trying to wrap my mind around the fact that he had missed me, that perhaps he had loved me, too. I was grieving a person who was barely alive, but I had not expected to also grieve a lost love.

0229161340A few days later I sat in a chair, the black lines of a muskox appearing on my arm beneath the needle of a tattoo gun. I had settled on the logo of the Large Animal Research Station, where Whitney had lived that summer in Fairbanks. Next to the animal, along my forearm, was Whitney’s handwriting: The Love of a thousand Muskoxen, Whitney—the last line from the only one of his letters I had kept.

* * *

As spring came to Montana, the snow began to thaw, and I began making arrangements for my oldest daughter to visit her dad for spring break. One night I impulsively checked prices for flights to the San Francisco Bay area, where Whitney lived with his parents, Janet and Ron. I found a ticket so cheap that I bought it immediately. And after I put my daughter on a plane to Oregon, I left my youngest daughter with a rotating group of friends and family, and I boarded a plane to California.

I spent three days in Whitney’s house, but he never knew I was there. I knew this before getting on the plane. I knew that if Whitney had to register who I was and why I was there, it would exhaust him to the point of a “crash”—a full-body shut-down, much like a coma. And so I tried not to think too hard about what it would feel like to hold his hand. Sometimes I hovered in the hallway, staring at the door to the back room that he had lived in for over three years. I tried to feel his presence in other ways—through the spice jars labeled in his handwriting, his picture on the wall, the Bob Dylan records in the living room.

The house contained decades of family memories and all of the joy and chaos generated from raising children, but now it hung heavy with grief. And while I had walked in as a stranger, Whitney’s parents had welcomed me like family. All day and night, they shuffled around the kitchen, arguing with insurance companies and pharmacies while preparing IV drips and medications. I watched them, feeling awkward and helpless.

His father, Ron Davis, the brilliant scientist I’d read about, radiated humility and warmth. Janet Dafoe, the psychiatrist who had given up her practice to care for her son full-time, seemed at the end of hope, but talked about Whitney as though he would recover in the next few months. She told me about taking immaculate care of his feet. It’s the only way she’s able to touch him. “I send all my love for him through touching his precious feet,” she said. Once, Whitney had gotten out of bed, opened the door to his room, and laid down on the floor with his feet sticking out into the hallway. She said it nearly gave her a heart attack. Then she realized he wanted her to change his socks. I told her I wondered if he’d really just wanted his mother’s love.

* * *

The day after I returned home to Montana, Janet called me. She had asked someone to convert all of her home movies to DVDs, and the man had found a video that Whitney had taken in Alaska. He called Janet to say, “There was this girl that he had obvious chemistry with.”

Though I had no recollection of him using a video camera, I stopped, mid-step, walking from one room to the next. A few days later, at two in the morning, his mom sent me a text. “It’s you in the video,” she said. I got out of bed and tiptoed to the living room, trying not to wake my sleeping daughters. Janet called me on Skype, pointing her laptop towards the television so that I could watch the video.

The footage was grainy, and the light was dusk. I had blonde streaks in my hair. We were standing next to the caribou pen, and I was wearing his college sweatshirt. Whitney was interviewing me. He mentioned that it was near midnight. When he spoke in the video, there was a fluttering of memory and love and grief in my chest. I had forgotten how deep his voice was. For a moment, I remembered what it had been like to be so close to him, each of us a satellite to the other’s moon, a couple of kids caught up in a summer romance.

I immediately began trying to figure out when the video had been taken, as though it were a puzzle. “I think this was the night before he left Alaska,” I told Janet. “If we’d already traded sweatshirts, then he was about to leave.”

I watched with heartache. “Stephanie Land,” Whitney said a few times when he would focus the camera on me. Once I caught him doing a close-up of my face and I turned to smile at him. Then I puckered up my lips, sending a kiss in his direction.

The footage stopped and then started again. I stood in the sun behind my Subaru, the hatch open and raised above my head. It was the morning before he left. As I watched the video, I could see myself trying not let the sadness show on my face. I could tell that I didn’t want him to leave.

Then, blurriness, as Whitney turned the camera around to his own face and handed it to me.

From my living room in Montana, I sucked in a breath. I remember doing the same thing when I was with him in Alaska—how sometimes he would cause me to lose my breath. “He’s so young,” Janet said. He’s so beautiful, I thought.

I followed him into a caribou pen, the bag of lichen flung over his shoulder. He wore a kid-sized tie-dye shirt and a beaded necklace that I had asked him to give me several times. As he knelt to feed a small group of caribou, I focused the camera on him. He moved his face close to some of the yearlings, nearly touching their noses with his lips.

Just before the video ended, Whitney took the camera again and lay back in the grass. Several caribou gathered around him, sniffing him, hoping for more treats.

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* * *

Over the next few months I became involved with every aspect of the myalgic encephalomyelitis community that I could. I helped organize protests. I wrote and published articles. I became a Blue Ribbon Foundation board member. I spent countless hours on the phone with patients who’d suffered through years or even decades of being ill. I spoke to people who’d lost spouses with M.E. to suicide. Each time I published an article, a wave of emails, comments, and tweets would blanket me. I felt like I was gasping for air.

During this time, Whitney improved slightly. He began getting a liquid food mixture injected directly into his stomach, but still had to be hooked up to an IV drip for most of the day to receive extra nutrients. On one Saturday afternoon in July, Janet called.

“Can I ask you something?” she said, “Did you ever think you and Whitney would be together again?”

I stammered through a response. Though I had wanted to, I didn’t know of his feelings for me. He traveled alone, often without his camera, and I figured the only reason he’d spent so much time with me that month was because he was leaving and wouldn’t see me again.

“Well,” she said, “You might be able to see him soon. He’s getting better.”

“Soon” meaning in the next year or I’m not sure when. I think she had renewed, added hope.

Whitney had gained weight, and they’d taken him off the IV drip completely. For almost two years, he’d been hooked up to an IV for 20 hours a day. Now it’s decreased to five hours. Janet told me that his blood tests continue to improve, but he still feels horribly ill. I told her to send him my love, as always. I am visiting his family again next month, but still won’t be able to even enter his room.

* * *

Whitney lived and breathed music. In my apartment in Missoula, in the cabinet filled with DVDs that I’ve accumulated for my daughters, I discovered two mixed CDs that Whitney made for me that summer in Fairbanks. One of them, Bob Dylan’s Blood on the Tracks, was my soundtrack for months after Whitney had left. I listened to it every night until it became scratched and worn out, and I haven’t been able to listen to that album since.

The other is a mix that Whitney made for himself while he was photographing field scientists in the Alaskan Tundra. Across the front of the CD, along with a few drawings of butts, Whitney had scrawled “Whitney’s Cold, Buggy, Work Mix.” I traced his handwriting with my fingers. When I played the CD, I recognized the first song from its infamous opening guitar pickings—Led Zeppelin singing, “Lady, you’ve got just what I need.”

A memory washed through me: I stood in the kitchen of the apartment he lived in that summer. Everything was decorated in yellow—the counters, the floor, even the table and chairs. We weren’t wearing much, since his roommate was out somewhere. He had on a loose pair of sweatpants. I wore his olive green college sweatshirt. We stood next to the stove, cooking fancy grilled cheese sandwiches. The Dire Straits’ song Wild West End (our song) played on the stereo on repeat. I buried muffled laughs into his chest, placed my hands on his bony bouncing hips. One of his arms draped around my waist. With the other hand, he ate a slice of cheese.

* * *

Perhaps it’s unfair to only want to remember him the way he was at 19, before the illness stole everything from him, except for his breath and heartbeat. Sometimes I’m scared to see him as he is now, in his mid-thirties and imprisoned in a body weighed down by pain. I fantasize about sitting with him, holding his hand, and looking each other in the eye, but I have no idea when that might happen. The way he is now, images of his gaunt frame, are what I publish for the world to see, to bring attention to the need for funding to research his disease. To fight for an approved treatment, a cause, a cure.

I’ve returned often to those weeks in Fairbanks. I’ve replayed certain moments, chasing them over and over again. When certain songs play, I remember driving, dancing, or watching a movie with Whitney. The memories are stored like movie reels that I play to feel closer to him. And sometimes I wonder if he plays them too.

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* * *

Stephanie Land‘s work has been featured in The New York Times, The Washington Post, The Guardian, and through several other platforms. Her memoir, MAID, is forthcoming through Hachette Books. She lives with her two daughters in Missoula, Montana.

Editor: Sari Botton