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.”

*

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.

*

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. 

-step.

 

 

 

 

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On Meeting David James Duncan

journal entry:  04.25.06 tyler street coffee house, port townsend, washington 12:15pm

i think, perhaps, treating yourself to lunch alone at a neighborhood coffee shop during the rush of midday is something everyone should do at least monthly.  i tend to do it weekly.

i went to this book-signing in seattle yesterday.  i’m not sure if i was fully prepared for my feelings in meeting the author that has encouraged me not only be a better writer, but a better reader, a better self, and a better person.  his words have constantly been in the back of my mind, whether it was Gus and his oranges, perched on a riverbed about to meet the woman deemed his soul mate [from “The River Why”], Irwin’s laugh at the end of “The Brothers K,” or reminding myself to look inward and stare at motes of dust.

i think i expected him to be more philosophical and less funny.  he seemed nervous, caffeinated and not himself.

i can’t imagine what it must be like to go on a book tour…

walking into the auditorium i was anxious to see what sort of people DJD would draw.  young fisherman?  old philosophers?  green, yuppie-types?

i was already walking in, feeling a twinge of guilt.  not only had i not read the book, i had just purchased it at Barnes & Noble.  i thought it odd that it was tucked in the back in the “new religion” section.

earlier, after buying “God Laughs and Plays” from the dreaded bookstore chain, i walked up the street to a pub i had heard good things about, sat out on the deck and read the preface.  not only was DJD speaking of something i have a long history with, he was using the Narnia Chronicles as a comparison, a series i had just finished reading for the…oh, 20th time.  i laughed, smiled, furrowed my brow, drank a couple of beers and kept my eyes peeled for someone noticing what i was reading, saying they were attending the same function.  i was even hoping to see DJD himself in some strange twist of fate.  i can think of no other person i would want to buy a couple pints for.

standing outside the town hall, smoking a forbidden cigarette, a man in his 60s walked out to grab something out of his volvo.  i asked him if he was there for the reading.  he said he was, and went inside.

i sat in the next-to-front-row, as close to the center as i could.  a hat sat next to me, which ended up belonging to the man with the volvo.

i sat, clutching my hardbacks and a weathered copy of “My Story as Told by Water.”  the book has gone everywhere with me in the last two years, replacing my ancient copy of “The River Why.”

i heard a woman sitting next to me say she comes to all the book signings, since she’s on the town hall mailing list.  the salty dog sitting next to me asked if i had read his books and what i thought of them, since he had never read any.

people walked up to the front of the auditorium, purchasing copies of books i have grown to consider as prized possessions, carelessly reading the back cover, flipping through the first chapter, then reading the last page.

(yes!  i actually saw that.)

i had to move to the back.

i took notes, writing them in the back of my paperback.

by the time he started reading, i was crestfallen.  is this what making it as a writer means?  selling yourself to book-hungry yuppies looking for the newest dinner conversational piece?

in the end, he read a bit out of “The River Why,” read a lot out of “God Laughs and Plays,” and answered one question by reading more.  he spoke of being tired, misunderstood in his purpose of the new book and spoke to audiences that walked out in response.  of course, all of these things made him even more of a hero to my perky ears.

i learned that he lived in missoula, a place i had already planned to visit.  i learned he’s a guest instructor there, and i silently made pilgrimage plans.  oh yes, montana calls.

i wanted to ask him if he missed oregon.  if montana was a close second–or even better.  i learned he has a 24-year-old son who goes to school in bellingham.  my heart leaped.

my pulse raced as i stood in line.  he said he was working on a new fictional piece, and fiction was something he’d like to do more of.  he seemed to be content to sit, sign, and chat a bit, but it was nothing like i had expected.  i wanted intimacy.  i wished for people in sandals and weathered carhartts sitting around a man in a chair or leaning on a table…like story-time at the library.  this was all too…promotional…too entertaining.

i wanted to wait until everyone had gone, then ask him to sign.  but i feared freaky-stalker status.  by the time i got to the table and look at the greatest living author i have ever known, i mumbled, “you’ve been an inspiration.”

this was not how i planned it.

he did sign my river tooth with glee, and wrote “for Stephanie” above the “strategic withdrawal” essay.

“i like this one,” he said about the piece.

“it changed my life,” i wanted to say.

i suppose all there is to do now is plan that move to MISSOULA, MONTANA.

step.

Archives, circa 1995: “My Desk”

**This one is the equivalent of a doodle in a boring class in high school.**

MY DESK

It’s a normal room, or so it seems. The desks, neatly lined in rows on the hard, wooden floor. The floor, cold to the touch, holds no warmth. The walls, painted a sheet of cold, snow-like whiteness create the feeling of sitting in the middle of a snowstorm. The teacher rises from her desk and walks to the front of the room. Her words flow out from her mouth as if she is in an icy trance, flung toward warm bodies, but instead, they freeze in the air like icicles. As I sit at my desk, shivering, watching the words pass me by, I suddenly find a smirk spreading across my face. I know something that nobody else knows. I will tell you, but only because one day you, too, might share in the adventure.

My desk, isn’t really a desk. The seat I sit upon is really a saddle. Its flat, cold writing surface is really the head of a mighty beast. Its long, narrow legs, frozen to the floor, break free as warm blood courses through their veins. Nervous hooves stamp majestically and I find my wintry chair has evolved into a massive, warm-blooded steed, and I proudly sit astride the saddle. Great, powerful wings sprout from its sides and I think only a prized sculpture could compare to their beauty. Each detail is exaggerated in such a way, one could see the carefully carved lines from miles away. Impatiently, the mighty nostrils let out a loud snort of hot air, telling me he is ready to take off. I grab the reins and watch as the awesome wings stretch and cleave the air with an up and down motion. We fly and break through the winter walls as the icy room is suddenly one desk short.

My massive, winged Pegasus takes me to an enchanted land high up in the clouds from where the ground seems made of cotton candy. In the sunny skies, other horses fly around me and smile knowingly. As we touch down in this enchanted place, I walk through green, grassy fields and lie down next to a quiet stream with my horse. We talk about the wonders of the universe as we eat from exotic fruit tress that never go bare, because, in this land, it is always spring, and the days are always sunny with an afternoon thundershower. Soon, the sun begins to set and the light fades, not to be seen until tomorrow. I gaze up at the stars in the sky as they blink me into a deep sleep where dreams are plentiful.

When I am awakened by a rush of cold air, I see my classmates scurrying out of the classroom, all bundled up in the winter clothes. I, too, gather my things as I rush to my next assigned class where there is yet another special seat, and yet another adventure awaits me.

step.

Archives, circa 1997: “The Party”

**I wrote this in a writer’s workshop that took place in a loft much like the one described in this story. It was our last exercise of the class, and the instructor opened a book and read a sentence that was something like, “The one sound that can cut like a knife through a crowd of people talking is the one of your significant other laughing with a member of the opposite sex.” Then, she told us to write for ten minutes. This is what I wrote. I was 18.**

THE PARTY

Patiently, I stand by the door, waiting for my other. As the sounds of him brushing his teeth just reach my ears, I silently hope he doesn’t dribble toothpaste on his tie like he always does. I stand next to a mirror, and as I look at my reflection, I share a secret with the woman I see in its frame. “She is so beautiful,” I sigh to myself. She gives me a little smile as I hear my other approaching. He is silently cursing at himself, wiping his tie with a damp tissue. I chuckle inwardly while he grabs the keys. I notice they are *my* keys, which means he is planning to drink more than he should.

He asks if I’m ready to go, and I reply that I am. I look down at my feet, nervously smoothing out the front of my dress. I reach to my shoulder in my self-conscious manner to make sure my bra strap isn’t showing. “I should’ve worn a black one,” I mumble to myself. But nice underwear wasn’t at the top of my list these days. It must have been weeks since he’d seen me in just my panties. He sleeps mostly on the couch, you see. “I get too hot when I sleep with you,” was his excuse. I never questioned him about the possibility of opening a window; I liked the queen-sized bed to myself.

We don’t say much to each other on the ride to the party. The plentiful conversations have vanished, and now my first love and I no longer know each other. Maybe it was me who no longer knew myself. Ignoring my reoccurring thought once again, I look out the window. From the passenger side of my car, I catch glimpses of people watching television or cooking in their houses. “What a wonderful, normal life it must be to be so happy,” I think.

He parks my car and we walk hand-in-hand down the sidewalk to this green-colored door. It sits in the middle of a couple stores in a downtown block of a neighboring town. As I open the door, the smell almost overwhelms me. It’s the smell of old, musty houses and blankets. It even made me smile to myself, thinking of when I was a child, spending nights at my grandma’s house. The comfort of the memory warms my soul. Comfort that is no longer familiar.

I look up the steep, wooden stairway and I feel his hand pull me closer to the top. My toes are already starting to ache as we reach the landing. He lets go of my hand, following his “No Affection in Public” rule. It’s funny, how you can grow accustomed to your heart being broken numerous times a day. Those silent, little shatters inside your soul become whispers as the years go by, but the pain never goes away.

A man that I slightly recognize answers the door. He knows my other very well, and I can feel his eyes groping the area from my shoulders to knees. We step inside to the entrance of the large studio apartment, and I can’t help but notice the vast sea of unfamiliar faces. Everyone standing in their own little groups, laughing at stories with no humor, and attempting to appear interested while people talk at them.

He leaves my side and joins a group of friends he spends a lot of his free time with. I take a moment to remind myself that they are the reason we are here, after all, and once again I am left alone by the doorway. My gaze falls to the stairs and I feel my whole body yearn to sit at the bottom of them, inhaling that wonderful scent, waiting for this night to end. I sigh and look back to the “party” that awaits me, and I realize he is nowhere to be seen. He has once again disappeared into the crowd.

We’ve been together for three years now. Three years of parties I do not want to attend, love given but not returned, and glances that no longer linger. It wasn’t always like this, of course, but this is now my comfort zone, and I don’t know who I would be if it left me. The unknown is not to be explored, my dying confidence has decided. I look around the room once again, taking everything in. Sounds of someone playfully strumming the piano reach my ears, and I think that maybe this party won’t be as terrible as the others.

I shyly venture out from my place by the door to make my way to the next room, cautiously avoiding the eyes of other strangers. All of them seem to look at me in a blank way: their eyes saying, “Who are you and why are you here?” I always had a joke with myself that I should wear a pin on my dress, branding me to my other. Then perhaps people wouldn’t have to wonder why I have made this appearance at a party I wasn’t directly invited to.

In the next room sits a simple, old, grand piano. This marvelous instrument sits in all its glory like an old friend. Its smiling keys are the only welcome face I’d seen that night. Whomever had been playing it was now gone, so I somewhat sneak over and fold my dress underneath me to sit on its bench. After a moment or two, I place my fingers on its smooth, white keys that I know so well. I don’t really push on them, I just pretend to. My fingertips find the notes of a song that only I can hear in my head, where it is safe.

A young man that I knew from school sits next to me with a wide, handsome smile. We know each other’s names in passing, and had often tried out for the same drama productions. “He is very beautiful,” I think to myself, recalling all of the other women’s conversations about him. They spoke of him constantly, always complaining that he was taken. I grow self-conscious as I look into his deep, brown eyes, and I have to practically sit on my hands to keep them from reaching out to caress his tan skin, or run my fingers through the soft, brown hair that has been ever-so mildly combed.

He comments on the song I am not really playing and places his fingers on the keys in the same fashion I had. He begins to play the same notes as I was, only his are audible. A genuine laugh escapes from me as I begin to play the song with him.

He begins a conversation with me, asking if I had ever taken lessons. I just smile at his surprise when I reply that I haven’t. His beautiful hands glide over the keys as they had been trained to do, playing another song that is by the same musician.

He stops, and we glance at each other, seeming to both notice that the room we are in is now vacant. My fingers automatically tuck the hair behind my right ear, covering my blush from his gaze. I dare to look at him once more, just one look at this handsome creature, and then I will go back to the comfort of submission before another.

Then he kisses me.

It’s such a short kiss, one where you just start to feel the warmth of their lips–and then they’re gone. I sit there with my eyes closed, my lips still puckered, a small sigh of pleasure dwindling at my mouth. A pleasure I had forgotten so long ago.

As I feel him kiss me again, I couldn’t think of anything I wanted more. His mouth touches mine and he parts his lips slightly, our breath joining with one another’s…and it is at that moment that my other laughs. He has this laugh that I know too well. Well enough to pick out from a crowd of people. But it is at that very moment that I realize what it is that I am doing. I find my hand on the back of his neck, and my tongue toying with the thought of meeting his, and I am completely torn. Torn between leaving the life I know so well, and plummeting into the chance at a new one. My confidence questions my every thought:

“Do I stay here and do something so wild, impulsive, and unlike me? Should I whisper in this young man’s ear as my hands begin to wander that we should escape and make love at the bottom of the stairwell? Or should I go back to the arm of my other, in my meek posture, waiting for someone to notice that no one is speaking to me?”

My heart breaks once again as I pull away from him, feeling his hand reach for my waist, hearing the words he says to convince me to stay. I cannot look at him, I cannot look into those beautiful, brown eyes, for the guilt would overwhelm me. I slowly rise from the piano bench, desperately trying to excuse myself, and I start to run. My shoes echo in the stairwell as I leave my wonderful young man behind, my body breaking into sobs. The familiar, hated sounds of my tears escape from me once again as I begin my lonely walk to the car. The wet pavement welcomes me, and I sit on it, resting my head on my bent knees, not even considering the fact that I am ruining my dress. The want for my other grows inside me like a love-sick cancer, and so I wait for him, avoiding the questioning looks of strangers. He will find me here, eventually, crying and alone on an empty street, knowing that he now has to leave the party. He will be angry, and I will eat his anger like a starving child. For this is my wonderful, normal life.

step.