Sometimes You Go To California

On Tuesday night of this week I stood at a podium in front of a class of about 40 students. In my hands I held out a printed copy of the essay I’d recently had published through the Longreads blog about Whitney Dafoe. It wouldn’t be the first time I’d read it out loud. I’d practiced over a dozen times in the previous few weeks. My voice shook, even when I was alone in my apartment, and sometimes my eyes stung and watered.

“This piece is really raw for me right now,” I said. I didn’t say why, and instead started to read. I would have to explain that I’d been at Whitney’s house the day before. That I saw in a book a photo I’d taken in Alaska of him standing on his work truck to take a picture. That over the weekend, I’d seen his mother burst into tears over hearing the lyrics of a song. And through it all had known, once again, that he had no idea I was there. I’m sure I would have lost my composure halfway through.

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Photo courtesy of the Davis-Dafoe family.

Every time I looked up, I saw blank faces, mouths agape, and one student was audibly crying. I felt horrible, but owned my decision to read the essay. I force ME/CFS in people’s faces so that, someday, it won’t be a depressing conversation.

I’d gained a new person to carry constantly in my pocket that weekend. Jamison Hill and I had been friends through email and text for several months, and a large part of my trip to California was the chance to meet him in person.

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Photo courtesy of Jamison Hill

Jamison, for those who are unfamiliar, was featured in my friend Ryan Prior’s Forgotten Plague along with Whitney. Jamison’s the one in the documentary’s trailer who’s laughing, his dimples going deep into his cheeks, his bright blue eyes shining despite being one of the millions missing from ME/CFS. It’s been six years since, right around Thanksgiving, that Jamison went to the gym early in the morning like he always did, and couldn’t finish a workout he normally did thoughtlessly. His story is one of the terrifying ones: he went from being a physical trainer, a model, an amateur body builder, and otherwise active 22-year-old college student to in bed, sick, getting rapidly worse in a matter of years.
Before Jamison submitted a story for me to publish at the Blue Ribbon Foundation’s “Share your Story” section, I’d only heard that he’d become as bad as Whitney. I’d seen GoFundMe fundraisers to help with housing, medical expenses, and treatment. When Ryan spoke of him, his voice grew soft; a tone I’d come to recognize in the ME/CFS community as a person who’d taken a turn for the worse. A person who was living a form of death.

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Jamison later explained that he’d been in a cave for the last 18 months, unable to tolerate daylight, clothing, speaking, or chewing. Coming out of it through saline IV treatments was a rebirth. Even though he had a chance at a new life, he was still unable to sit up in bed. But he could make sounds that people understood. He could eat food. He could communicate with people through email and text.

I knew most of this through reading a lot of what he’d written, but to see it was something else entirely. Ashley, Whitney’s sister, drove me, my daughter Mia, and Janet, Whitney’s mom, to Jamison’s house three hours east. We arrived at sunset, enamored with the view from the porch. Janet was the first one to go in and visit with Jamison. I was the second.

Before going back to his room, I was worried what germs I might have on my clothes. A simple cold virus could knock him down further. I was worried seeing me would cause him to crash. But mainly I was worried that he’d go beyond his limits and wake up the next morning feeling horrible and unable to move.

When I read what Jamison wrote about meeting me in his blog, what stuck out the most was that he’d hoped seeing him, smiling and sitting up would give us, his largest group of visitors in years, a new hope for Whitney.

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But Jamison’s just like that. He’s easily one of the happiest, lovable humans I know. In the months of us emailing and texting back and forth, he’s gone into frustrated rants maybe twice. And a few times I had to specifically ask for them. Seeing him, sitting there, knowing he hadn’t gotten out of bed in almost two years, I was completely in awe of his ability to maintain any semblance of who he’d been six years earlier.

So we smiled at each other. I hugged him a bunch, and held his hand. We made jokes, told a few dating horror stories, and then it was time for me to give him a break.

We texted late into the night. I kept asking him the next day if he felt all right. He said yes, and said he wanted to see us again. So I bought him some tea from his favorite little shop, and some fudge. We drove up to his house at sunset again, and took some pictures on the porch. I went inside to use the bathroom, and snuck across the hall to Jamison’s room.

He had thick blankets on the windows and the lights off. I couldn’t see anything, then saw the faint light of the screen of his phone–his signal to tell me where he was. I saw his shape then. He wasn’t sitting up. He was on his left side, bent over almost in a fetal position, his cheek pressed against the bed. Crashed.

I felt his hand reach out for mine and sank to my knees at the same time. My other arm went around his back, my right cheek on his head. He only had boxers on with a sheet covering his legs and feet.His mom came in to open the curtains all the way so we could see each other. I stayed that way for a bit, whispering that he should have told me he had what ME/CFS patients call “the world’s worst hangover.”

He wanted to know how long we were staying, and where we were going next, and, of course, offered ideas of where to go eat dinner. He couldn’t talk like he did the day before. Most of this I either figured out through pantomime or he had to type out on his phone.

I went in the second time after everyone else had visited to kneel down by his bed to say goodbye. He held my hand tighter, and whispered “I’m so tired of this shit.” I told him I think about him constantly. That I love him. And that I’d miss him dearly. That I’d be back to visit as soon as I could to be there more than just an hour or two. “I’ll spoon you next time,” I said, and he chuckled.

I stood out in the living room, watching Janet hug Jamison’s mom, Kathleen. “We have amazing sons,” Janet said. They were crying. A stark contrast to the night before, when we’d been celebrating recovery. Kathleen went in to check on Jamison and he wanted us all to come back, stand in the hallway, and wave goodbye one more time.

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Mia Land, Stephanie Land, Jamison Hill, Ashley Haugen, and Janet Dafoe

“He just wants to see your faces again,” his mom said. So we stood there, blowing kisses, waving, watching him do it in return from his dark room. The cave. For the next day, as I told him I was on my way to the airport he’d text “Damn. Don’t go.”

From the moment I’d left the hallway of his room I hadn’t wanted to. I didn’t want to drive away from Whitney’s house, watching Janet and Ron wave goodbye. It’s a different sort of grief, to feel too helpless, too far away, and isolated.

After I read the essay the next night, one of the students asked me if I had any advice on writing. I told them what everyone says: to sit in a chair and motherfucking write. But the next day Jamison reminded me of the necessary part that needs to exist before that.

There is only one thing you should do,” Rilke wrote. “Go into yourself. …confess to yourself whether you would have to die if you were forbidden to write. This most of all: ask yourself in the most silent hour of your night: must I write? …if you meet this solemn question with a strong, simple ‘I must,’ then build your life in accordance with this necessity…

Jamison writes everything on his phone. He can’t use a laptop, can’t stand looking at the screen. He wrote the last bit of his book looking at his phone through tanning goggles. That amount of passion, that desire to write words, humbles me. Even though I am finishing this post in the chaos of bedtime with a two-year-old on the floor tearing apart paper and throwing markers, it would take a crazy amount of passion for me to write this out on my phone. I’ve written in journals since I was 10 years old, and I deeply admire Jamison’s amount of “must” to write. To live.

 

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Advocacy in Action: Ryan Prior

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Stephanie and Ryan in Missoula

My friend Ryan takes 20 pills a day to stay well. I heard him tell this to crowds of attentive listeners several times over the weekend. “I give myself one shot a week,” he added, “and get an I.V. treatment once a month.” I watched him take the pills a few times. He carries them around in a large backpack, in one of those containers, separated out by the days of the week. The green one makes him grimace. I don’t ask what they are.

I’d sent Ryan a message on Facebook several months ago after someone who knew him encouraged me to. I’d watched Ryan’s documentary, Forgotten Plagueabout his disease twice in one week. The scenes with my friend Whitney, bent over in his bed, ribs showing, long fingers covering his face, and his scraggly hair emblazoned with a patch of sun, froze the tears in my eyes, planted my hand to my mouth, and made me an activist for myalgic encephalomyelitis, the disease so clearly killing a person I loved.

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Still image from Forgotten Plague

When Ryan visited Jamison for the film, Jamison still lived alone. He could sometimes do the dishes. He laughed. He did a few pushups to show how fast his heartbeat escalated, like he’d just sprinted a mile. When Ryan returned several months later, Jamison sat through the interview. He looked defeated. I wonder sometimes if he knew how bad he’d get. If he thought his trajectory was inability to speak.

I don’t know how many pills Whitney’s prescribed. His dad patiently grinds them in a marble bowl meant for spices, then mixes it with the liquid food they’ll pump into the tube surgically placed in his stomach. I watched his father Ron, a world-renowned scientist, thoughtfully stand at the end of the kitchen island at night, pausing in crushing the pills to look up at nothing. Maybe he thought of a new piece to the puzzle of his son’s disease that he researches full-time to find a cause and cure, or maybe he found the right place to put one.

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Photo courtesy of Jamison Hill

Jamison used to be a body builder. He lost the ability to speak for a year and a half. “He’s almost as bad as Whitney,” people had said, because he also couldn’t chew or sit up in bed. Whitney hasn’t spoken in almost four years. Hasn’t tasted food in at least two. But Jamison came out of it from heavy doses of saline through an I.V., and can tolerate flashes of light and laughing and sitting up. When Jamison first sent me an email to share a story he’d written about it all, I couldn’t help but believe Whitney would someday do the same.

Almost every patient I talk to says these words: When I get better. A form of faith I doubt I could match, and inspires me daily.

The other night Ryan said in front of a group of students, nodding to me, that I was close to Whitney when he could still walk and talk. I’d never thought of it that way. I don’t want this part of his life to be “after.” I hope for it to be the middle. Whitney didn’t just walk and talk. He danced. He climbed to places he wasn’t allowed. He stood, thoughtfully, just like his father, seeing the world framed in a photographic lens.

None of the patients I know think they’ll ever be as bad as Whitney, and I’m not sure Whitney knows he’s the worst. He must know it’s bad, especially on Monday—the day I flew to D.C. to protest—when they had to rush him to the hospital to repair a hole in the tube that gives him food. I know he feels alone in the prison his body has trapped him in. I know this because his mom tells me he cries all the time and she can’t comfort him by touch or word, but only by placing her hand on her heart before leaving him be. img_1413I walked around the United States capitol with Ryan for a few hours before the protest. It was hotter than I thought it’d be, and sweat dripped down my back into the waistband of my jeans. Ryan had changed into a dark shirt before we left, and he fought to keep the sleeves rolled above his elbows. I kept looking for signs he’d had enough. But ever the tour guide, he showed me the town he loved, walking me to the Library of Congress, and through the stuffy viewing platform. We paused to buy food and sat to eat it on a shady bench. We walked down past the Smithsonian, the Washington Memorial, gazed at the Whitehouse from outside the fence with the cops behind us yelling at tourists to behave. We stopped for souvenirs before sitting on the cool floor in the corner of the Lincoln Memorial. I remembered how the statue had been like a giant when I saw him at seven. How I’d looked up so far the back of my head touched my shoulders a little. Now I understood the weight of the words behind him.

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Ryan speaking to a group of visiting interns from the University of Georgia in Washington, D.C.

Ryan spoke a bit at the protest for his disease not even an hour later. I wondered how many times he’d done that. “I’ve lived in five states this month,” he said to a group of students a few hours later. His advocacy work had brought him to Chicago, Palo Alto, my town of Missoula, and Washington, D.C., where we held informational signs about those who suffer from the disease. Hashtagged MillionsMissing, the protest took place across 24 cities on four different continents that day.

I insisted on buying Ryan a fancy dinner after his final talk—the third in two days—and we walked through the dark streets of upscale neighborhoods to an oyster bar. Ryan went from gleefully tasting oysters from different coasts, ordering beer and a porterhouse, to excusing himself quickly. He returned to the table rubbing his eyes and couldn’t finish his meal. Within a few minutes, I’d paid the bill and gotten a car to take us home.

He said at least he’d probably sleep well that night. I wondered if he really would. I wondered if he was okay. Earlier that night, on the way to dinner, I’d told him I hadn’t thought he’d be able to do so much. I guess I wasn’t sure what to expect. Everyone who has the disease is affected differently, but most aren’t able to leave the house or even bed very much. Many hide their disability, spending the weekends recovering, not able to muster up the energy to shower.

Ryan calls himself one of the 10-15% of those who have recovered, as long as he takes those 20 pills a day. As long as he knows when to leave the restaurant and go straight home, and does.

Jamison and I texted later that night, after I dropped Ryan off. I tend to send him a photo of my glass whenever it has Jameson whiskey in it. I wrote for a little while at a bar before deciding I wasn’t writing anything. I couldn’t fall asleep; woke up groggy, dehydrated, and a little hungover. I figured Ryan probably felt the same without the aid of vices or lack of water or sleep. He sent a text and said he felt energized from getting out and walking, and I wondered if he said that so I wouldn’t worry. He swore he didn’t, but I knew if I were him I would have lied to me.

He sent me a few happy texts throughout the day, like Jamison always does. Sometimes late at night I send Whitney’s mom a text with a simple, red heart. Code. For love for each other we cannot explain. And the fiercest love for Whitney we hope he can feel.

For more information on myalgic encephalomyelitis, and to donate to fund research for treatment, go HERE

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10 Days to DC

Yesterday was ME Awareness Day. That stands for Myalgic Encephalomyelitis, otherwise known as chronic fatigue syndrome. My recent article about ME/CFS went live on SheKnows today, and I’ve spent the morning glancing at the clock, counting down the minutes until it went up. I’ve been freelancing for a year, and I haven’t done this act of anxious anticipation in a long time.

Because this is my friend Whitney:

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Photo courtesy of the Davis-Dafoe family. 

That tube coming from his stomach is how he eats. Up until recently, he could only tolerate getting nutrients through an IV. The tube in his stomach is an improvement.

Those headphones are on his ears because he risks completely shutting down at the sound of speech–even his own mother’s voice.

My article quoted a friend of mine, Justin Reilly:

“A brilliant physician I knew was one of the top public health officials on the AIDS crisis at its height,” says Justin Reilly, who has both Lyme disease and ME. “He said to me: ‘The CDC did the same thing to the AIDS patients as they are doing to you: They put their absolute worst people on it and ignored it as long as possible. But then people started dying grisly deaths in big numbers, and it wasn’t feasible to ignore it anymore. Unfortunately for you, your death will not be as grisly or swift.’”

Whitney has been bed-ridden for almost three and a half years. He hasn’t been able to speak in the same amount of time. He hasn’t experienced any major improvements since the Fall of 2014, the last time I heard from him.

In 10 days I’ll get on a plane to fly a red-eye to Washington, D.C. I’ll finally meet my friend Ryan Prior in person, who wrote and co-directed Forgotten Plague, and Travis Preston, who edited it. For the last month, I’ve been directly involved in the goings-on of the Blue Ribbon Foundation, the non-profit that backed Ryan’s documentary. Saying I’m excited doesn’t even touch my feelings over the opportunity to attend a screening of Forgotten Plague, especially one where Ryan’s in attendance and able to answer questions afterwards.

The next morning, the three of us will head to D.C.’s Department of Human and Health Services, where we will participate in the protest that is also launching the #MillionsMissing campaign.

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From the protest PR Committee:

On May 25, 2016, at the #MillionsMissing demonstrations, Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) patients and families, advocacy organizations and individual activists call for the US Department of Health and Human Services to implement the following list of demands.

Our goal is to give the 1 to 2.5 million i disabled American ME/CFS patients their lives back, and to prevent even more children, teens, young adults and adults from joining the ranks of the millions who are already missing — missing from their careers, schools, social lives and families due to the debilitating symptoms of the disease. Millions of dollars are also missing from ME/CFS research, and millions of medical providers are missing out on proper clinical training to diagnose and help patients manage this devastating illness.

For ME/CFS patients and their families, we demand:

1. Increased Funding and Program Investments

Funding and program investments commensurate with the disease burden

2. Clinical Trials

Clinical trials to secure medical treatments for ME/CFS

3. Accurate Medical Education

Replacement of misinformation with accurate medical education and clinical guidelines

4. A Serious Commitment

HHS leadership, oversight and a serious commitment to urgently address ME/CFS

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Photo courtesy of the Davis-Dafoe family. 

Whitney has been in my heart a lot this week. The task of raising awareness and funds to properly research his disease seems insurmountable. Knowing how many people suffer in silence, multiplied by the number of people who are suffering without a diagnosis, isolated, alone, and without any support, is a deep pool of heartache that I actively fight to not fall into.

Because of that, it’s easy to get overwhelmed. I spent today pitching editors (and even emailing back and forth with a couple who had suggestions!) articles about Whitney and ME/CFS, but for the last week I had to pull back from the volunteer work I do. I knew if I kept going at the rate I was, by the time the protest came, I’d be too run-down to bring add any energy to the events.

But here we are, on to the final countdown. 10 Days to DC.

I’ll see y’all there.

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In Going to Visit a Friend Who’s Sick

IMG_4287I told someone about the time Whitney and I had together recently, and said it was the perfect summer romance.

“We had a month. Exactly a month. And he was leaving and we’d never see each other again,” I said. “So we had this month of intense connection without worrying about whether or not it’d turn into a relationship. We could just be with each other, and love each other as much as we wanted without any stress over the future.”

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In going to visit a friend who’s sick, and telling people I’m doing so, most of the reactions are sad moans and frowns. When I said I wouldn’t be able to see him, they’d cock their head to the side a little and furrow their brows in confusion.

IMG_0052“He can’t tolerate anyone being in his room,” I tried to explain. “He’s too sick. He’ll crash if his brain is forced to process who I am and why I’m there and he’d go into a vegetative state. His body would shut down.”

“But I thought he only had chronic fatigue syndrome?”

IMG_0094I barely understood the science of it, or how it worked. The only way I could think of explaining it was that, even though he’d spent most of his time lying in bed for the last three years, it was more like he’d been resting with his eyes closed.

“Imagine how you’d feel if you hadn’t had any restorative type of sleep in three years. His entire body is so exhausted, any amount of energy output shuts him down to a hibernation-type of state.”

“From chronic fatigue syndrome?”

And so it goes. I can’t imagine what it’s like for patients to explain their daily lives to friends and family or doctors.

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It was late at night when I pulled into the driveway of the house where Whitney grew up. Even though his parents, Janet and Ron, had left the door unlocked for me, I still felt like a stranger creeping into the house. It’d been over 13 years since I’d seen Whitney, 10 or 11 since we’d talked on the phone, and over a year since I’d received any kind of message from him.

Ron and Janet’s nightly routine consists of quietly shuffling in and out of the back room where Whitney lives. The room he never leaves. He has to be prepared for them to enter the room, has to know when to expect them. Once inside, they work quickly to meet his needs then leave him be. On my first night at the house, I watched all of this with a mix of awe and helplessness.

When I finally went to sleep in the living room, I could still hear Janet moving around in the kitchen. Sometimes she’s still awake when Whitney’s sister, Ashley, gets up for work in the morning.

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Tibetan prayer flags hang over Whitney’s door, above the porch, and all over the back stoop leading from Whitney’s room. When Janet took me out back to look at the forget-me-nots and African daisies Whitney had planted, she said he might be able to see me from the window. I got nervous and hopeful at the same time. I tried not to look in the direction of his room, but after a while I couldn’t help it. He’d planted my favorite flowers all over the yard, and they, along with the columbine he’d planted for his mom, were some of the only ones in bloom. In the backyard, Janet and I talked in whispers. I caught myself staring at the the back bedroom, at the walls that encased him. At the house that keeps him safe, living with the disease that imprisons him.

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Late that night, Janet, Ron and I sat on couches in front of their television, watching the old film East of Eden. Janet had to go back to caring for Whitney, and Ron had to get to bed. I stayed up, finished the movie, and waited to see if Janet would come back anytime soon.

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Whitney Dafoe on Feb. 20, 2016. Courtesy of Janet Dafoe.

Around midnight, she came walking back into the room, a look of disbelief on her face. “Oh my god!” She said, and sat down on the couch next to me. “He asked for food in his j-tube!”

Janet explained that exactly three months ago, Whitney had undergone surgery to insert a feeding tube leading directly into his small intestine. Though the tube was designed to inject a special concoction of nutrients, he had only received water so far. Anything else was too painful. But that night, just after the last scene in East of Eden, Whitney had, for the first time, pantomimed to Janet that he wanted the nutrient mixture.

Before going to California, I wasn’t sure that showing up as a houseguest was a good idea. I felt like I was putting out a family already so overburdened with all of the tasks involved in monitoring and caring for their severely ill son. But Ron said “it’s good to have you here,” and I believed him.

Before I left, I walked around the house and took some pictures. I tried to capture the present and the past—anything that reminded me of Whitney, anything with his handwriting, or photos of him displayed around the house. I took a picture of a spice jar containing turmeric that Whitney had labeled as his. I could have sworn he’d brought the same jar to Alaska when I met him a decade ago.

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An avid photographer, Whitney had taken hundreds of photos of us in Alaska—feeding caribou, sitting in a field with muskoxen, journaling and doing art side by side. For me, that time exists only in memories and a couple of letters Whitney had written to me after we parted ways. But any photographs I had are now long gone.

The day after I returned home to Montana, Janet called me. I could hear the excitement in her voice. She explained she’d asked someone to convert all of her home movies to DVDs. After finding a video that Whitney had taken in Alaska, he called Janet. “There was this girl that he had obvious chemistry with,” he told her.

I was stunned. I had no recollection of him using a video camera.

A few days later, at two in the morning, Janet sent me a text. “It’s you in the video.”

I got out of bed and tiptoed out to the living room, trying not to wake my two sleeping daughters. We Skyped and Janet pointed her laptop towards the television so I could watch the video with her. It was almost like we were sitting next to each other again—instead of East of Eden, it was me on the screen. I had blonde streaks in my hair, and looked plump and shorter somehow. Then I remembered how tall Whitney is—over 6 feet—and realized that the video would have been taken from his height.

IMG_4289The footage is a little grainy, and the light is dusk. We are standing next to the caribou pen. I am wearing his college sweatshirt, and Whitney is interviewing me. He mentions that it’s near midnight. When he speaks in the video, there is a fluttering of memory and love and grief in my chest. I’d forgotten how deep his voice was.

“I think this was the night before he left Alaska,” I said to Janet, as we Skyped together. It was a little like putting a puzzle together, trying to figure out when the video had been taken. “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 put the camera on me. Once I caught him doing a close-up of my face from a way’s away and I turned to smile at him. Then I puckered up my lips, sending a kiss in his direction.

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All video stills provided by Janet Dafoe. 

The home movie stopped for a second, then started again. In the next frame, it was sunny. The camera was pointed in my direction. I stood behind my Subaru in a t-shirt that I’d coincidentally worn at his house that week. The hatch was open, raised above my head. This memory is hazy, but is still somewhere in my brain. As I watched the video, the memory became clearer. It was the morning before he left. I remember trying to keep the emotion from bubbling up inside of me. In the video, it is clear that I’m  trying my hardest to not let the sadness show on my face. I didn’t want him to leave.

Then, blurriness, as Whitney turned the camera around to his face.

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. Janet commented on how young he looked. He was only 19.

LARS-logoIn the video, he gives me the camera and I follow him into the caribou pen at the Large Animal Research Station, where he’d been working as a photographer all summer. I left the camera focused on him while he knelt down, and fed a small group of caribou some mossy snacks.

Other than the surroundings and the act of hand-feeding caribou, there wasn’t anything particularly special in what Whitney was doing. But the video made me remember what it was like to be so close to him, to be able to touch him, each of us a satellite to the other’s moon, a couple of kids caught up in a summer romance for a few weeks.

IMG_0144In the caribou pen, he put his face close to some yearlings, nearly touching their noses with his lips. The video ended with him holding the camera as he lay back in the grass, several caribou sniffing at him, hoping for more treats.
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Earlier in the video, he’d asked his roommate if she thought he loved me. She had nodded yes. At least I thought so, anyway, when I watched it—I couldn’t hear it very well. I know I heard him say the words “I love her,” and that’s all that matters.

When we were in Alaska, I didn’t think I’d really made much of an impact in his life. I didn’t think he felt all that much for me. But seeing him watch me through the lens of a video camera, I know now how foolish I was to assume that.

When I talk to Janet, I always tell her to send Whitney my love however she can. I can’t wait until the day I’m able to do it myself.

 

Donate to help find a cure for Whitney, and an estimated 2.5 million who suffer in silence HERE. 

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