by Tracie White
The gurney rolled past the garden where Whitney once loved to plant flowers. African daisies decorated the walkway. He caught my eye as he rolled past, furrowing his brow in curiosity at the stranger standing there. It was a relief to be seen. Then he disappeared around the corner, and I followed. As the EMTs lifted him up into the ambulance waiting in the driveway, Whitney motioned for one last photograph with his dad. Father and son leaned in together. Ashley snapped the shot. Whitney gave one last look at the sky as the gurney went into the ambulance. Ron flashed him a thumbs up. Janet climbed in, and the ambulance pulled off.
Hours later, I was once again standing in a hallway, this time just outside Whitney’s hospital room. I looked in through an observation window with his mother. He is handsome, as I’d seen in his photographs, with those thick, dark lashes, bushy brows, and his father’s deep blue eyes. High cheekbones give him a regal bearing, but the wrinkles at the corners of his mouth show his sense of humor. Whitney, I’d been told by now, was a bit of a clown. He loved to make people laugh. Those are intelligent eyes, I thought.
After the ambulance had driven off, Janet had called me on her cell phone. She said that Whitney had asked about me. He had seen me through the ambulance window, and he wanted to know who I was. “I was able to tell him that you are writing a book about all this, and he wants you to ask him questions,” she said.
I had followed the ambulance over in my Honda to El Camino Hospital as morning turned into afternoon. Whitney was now waiting in an isolation room to be wheeled to surgery. Nurses were coming and going, and checking the monitors, prepping him for the minor procedure. Whitney smiled at them and thanked them with peaceful prayer hands.
He turned his head and looked at me through the glass. And I looked back. In the harsh fluorescent lights, his skin glowed white, translucent even. A touch of unwanted gray hairs threaded his brown beard. Then the hospital room door pushed open, and his mom came out. I followed Janet into the small hospital room with the heart rate machine beeping and a notepad gripped in my left hand. And I met Whitney for the first time.
Chapter 3
The Adventure
I SMILE AND NOD, AND he smiles back. It’s like watching the image I’ve created inside my mind of this young man, built out of bits and pieces of stories and interviews and writings and photos, come magically to life. It is easy to like him, and I do like him, right away. Suddenly, the once invisible patient who has no voice lifts his hands to speak.
Whitney points to me with his index finger, then curls it down to meet his thumb creating an O that he crosses with his left index finger creating a Q.
“Question?” I ask. He nods.
With pleading eyes he shows how desperate he is for me to understand, for others to understand, what it’s like for him lying in his bedroom day after day, year after year, sometimes lacking enough energy to lift a finger to press the button by the side of his bed to call for help. Growing agitated, he reaches out and grasps invisible bars in both his fists and pounds them into place evenly spaced two-by-two around his bed. “Your life is a prison?” I ask. He nods. His head flops back, his eyes roll up in his head, and his mouth drops open. “You’re like a corpse?” He nods. For many, many hours of many, many days. He pinches his white skin. He’s not invisible. He’s all too real.
“What do you do while you’re lying in your room? Do you meditate?” I ask. He shakes his head no. He doesn’t have energy to meditate. He spends most of each day using what bits of energy he has to control the pain of digesting the liquid food that gets pumped into his body traveling through his digestive system thick and slow like cement. He sleeps very little. He has frostbite on his belly from the ice packs that manage the crippling pain through most of the day and into the night. He touches the skin on his arm again and grimaces. “It hurts to be touched?” He nods, then spells out A L O N E, writing on one of the soft brown blankets that traveled with him in the ambulance from home. Our eyes glisten with tears. He plasters his face with a mask of fear, his mouth frozen in a silent scream, then spells out another word on the blanket, P A N I C, and my breath catches as I feel a fist of panic punch into my own gut.
Whitney touches the gray in his beard and shakes his head. He has lost so much time. He’s missed so much. Rock bands that he might have loved. Photographs he could have taken. Stories he could have told. Elections he might have campaigned for. He’s missed the deaths of loved ones, and their births. He’s missed romances, and marriage, and children. He missed his sister’s wedding day. His hopes lie with his dad. He nods as he spells it out on the blanket: D A D. Then he spells out: H E R O. His dad will figure it out. He draws a line across his throat and shakes his head. No suicide. It’s not an option. He’s living for the many others out there sick like him. If he can continue on as sick as he is, other ME/CFS patients will too. Suicide is far too common within his community, and he wants to help stop that.
“You can’t talk, you can’t eat, you can’t listen to music,” I say, sympathizing. At the mention of music, his beautiful face crumples into creases, rivers of grief. A sob escapes his mother.
But then he recovers yet again, and he continues on. This is just part of his story. It’s important the rest of the story gets told too. Yes, Whitney has lived through years of hell trapped inside his broken body, but his life wasn’t always like this. He was an adventurer and an artist. He had girlfriends and a favorite dog and loved ice cream. He never felt anxious or panicked before he got sick. He shakes his head. He starts to explain. In his cupped hands he holds the sphere of an invisible Earth.
“You traveled the world,” I say. He nods.
I tell him I know of his travels. I know that he visited Jamaica and India, Ecuador and Guatemala, that he campaigned for Barack Obama during his presidential campaign, and that he won photography awards. That he loved hiking and nature and tending his flower gardens. I tell him that I will write about his adventures. There would be gaps in the story, but I’d work to create snapshots of his past life as best I could with words. The desperation in his face changes to some semblance of relief. And he smiles, the same crooked smile his dad sometimes has, his eyes bright.
He draws circles in the air with his finger. A bicycle? His head shakes no. A moped? No. A motorcycle? Yes, he nods vigorously and grins. “They told me you rode a motorcycle through the Himalayan mountains.” His eyes crinkle into a smile. You see? I don’t want to be here, his face says. I want to be far away.
I left that day utterly exhausted. As excited as I was to meet Whitney, communication had been difficult, emotional, and frustrating as hell. I was afraid it would be the only time I’d get to meet him, but I was wrong. After that day, Whitney began asking for me to come visit whenever he went to the hospital for a feeding tube replacement. He had a pantomime for me now. He would create a T with his fingers and make a book with his two hands opening and closing, indicating “Tracie—book lady.” About once every three months Janet would send me a text with the date and time of the next feeding tube replacement. No matter how busy I was, I always came. I’d meet the family at home, then follow the ambulance over to the hospital.
Whitney never spoke during these meetings, nor could he read or write. At times, he could look at a photo; other times, that was too much for him. He used dramatic facial gestures and arm gestures to tell his stories. Janet called it WSL for Whitney Sign Language. Sometimes, with Janet or Ashley’s help, I could guess what he was trying to communicate. Often I failed, and he’d get so upset, shaking his head and arms in anger. I constantly worried about pushing him too hard and causing him to crash. Whitney was in bad shape, but I knew he could still get worse. I also knew that he was passionate about sharing his story. He signed to me that it was worth it.
Each time I left him, I returned to my home in Santa Cruz, where I had turned my daughter’s upstairs bedroom into a home office, filling it with books and files on ME/CFS. I’d get to work on my laptop trying to fill in the blanks in the stories he was t
rying to tell me by digging—browsing his old photographs online, looking through ME/CFS chat rooms for any signs of a post he would’ve shared early on in his illness. I imagined him back then, sick but still able to talk, listening to music, even watching movies on his laptop with Ashley. Now he was a grown man, stuck in a room, still cared for by his mom. How did he get so sick? Did his parents try to help him early on? Of course they did. His dad wasn’t a medical doctor, but still he worked at one of the most prestigious medical schools in the world. Why couldn’t he find answers? I was trying to make sense out of all of it.
One day I read an essay Whitney had posted on his photography website in which he was obviously trying to do the same thing. Make sense of it all. He was twenty-nine years old, getting sicker and sicker. He could still type on his computer, apparently, but only from bed. Obviously, he was scared to death about what his future held:
“Really sick,” he wrote. “I can’t talk. Can’t type/text enough to communicate. Haven’t had a conversation with someone in six months. I have been struggling with health problems for the past eight years since I was 21. Every time I traveled my health seemed to plummet. But I have always been inspired and dedicated and never thought I’d wind up where I am now. So I kept going, kept pushing myself to do everything I wanted to do. My trip to India was the last straw it seems.”
Whitney’s trip to India was the pinnacle of his traveling adventures: this he had indicated to me many times through his hand gestures. He was twenty-three years old at the time, on an extended break from art school, planning to stay for months, or at least until his money ran out, but with no real schedule in mind. He flew from San Francisco into the Himalayan mountains, landing in the region of Ladakh, known as the “gemstone” of the Himalayas, popular with tourists for its raw beauty and the rugged mountains, its many monasteries and Buddhist monks. Whitney was drawn to Buddhism and planned to study it while he was there. Parts of the region soar to altitudes of eighteen thousand feet, peaking at unbreathable altitudes of twenty-three thousand feet—a height that rivals neighboring Mt. Everest’s twenty-nine thousand feet.
As soon as he landed, he got sick with a strange light-headedness that made him really dizzy, with stomach pains and fatigue. He hoped it was just altitude sickness, which commonly occurs at altitudes as low as eight thousand feet. Still, he was worried. He’d been getting sick with similar symptoms for the past two years, ever since a trip to Jamaica. But never this bad.
As I read the emails Whitney sent to his mom at the time, I had been a bit shocked to learn how sick he had actually been, even before he got to India. And also surprised that he almost terminated his trip soon after landing there. He wrote to his mom that he had scheduled a return flight before the end of the month, and he had two doctor’s appointments planned for right after he got home.
“I just want to put an end to this once and for all,” he wrote. “It has dragged on and tarnished enough of my life already.… I want to put all my energies into seeing doctors. I’m sick of only being able to give 50 percent.”
And then, like a typical adventurous young guy, he just changed his mind. He didn’t want to go home, and anyway, when he traveled to lower altitudes, he began to feel better. He never got on that flight and instead stayed in India a total of nine months. He emailed home that he felt fine, that he was having the time of his life backpacking, riding motorcycles, taking buses or trains across the country. He wrote about plans to ride a jeep over one of the highest motorable passes in the world. “Like 5,000 meters or something crazy…” And camping by a “crystal clear waterfall,” like when he was a kid backpacking with his family. He helped build a Buddhist nunnery and took a bus and a train to Nepal near Kathmandu, where he lived at a monastery for five weeks for an intensive Buddhist philosophy retreat.
“The poverty is sad,” he wrote. “But the spiritual community here is really beautiful.” His emails were spotty, and despite his mother’s pleadings he didn’t return home for Christmas. He wrote about being thrilled to experience an “anti-commercial Christmas.” And then suddenly his emails stopped. Three months later, he was in a hospital in Calcutta, deathly ill.
Searching for answers to fill in that three-month gap, I returned to Whitney’s virtual footprints online, but I found nothing. Eventually, I discovered the rest of the story in a document filed along with all of Whitney’s medical records stored in a chest in his parents’ dining room. Whitney had written it several years after his trip to India, as a kind of medical diary for his doctors and his dad, who were still trying to figure out what was wrong with him at the time.
Five months into his trip to India, Whitney got really sick again. One night, about the time his emails home stopped, he had nausea and mild diarrhea. For the next two weeks, he was incredibly ill, with exhaustion, upset stomach, and fever. He stayed sick for two weeks, got better for two weeks, then got sick again. He must have seen doctors there. But he refused to go home and kept pushing himself on, determined to live out his grand adventure.
“For three months, I took medicine for parasites and worms and maybe an antibiotic,” he wrote, admitting he was so sick at that time the details were hazy. “After three months of this I had lost 40 pounds, weighing 125 pounds. I developed a fever and pneumonia and was hospitalized in India.” Then he came home. I asked Whitney once what the hospital was like for him in Calcutta, but he just grimaced and looked away.
When Whitney arrived home, he was a skeleton of himself at 115 pounds. Ron and Janet were shocked. He was tormented by severe dizziness, along with debilitating headaches, swollen glands, fevers, and stomach pains. His energy level had dropped to zero. Ron suspected that he had picked up parasites on his travels. Ron told me that sometimes parasites are really good at hiding, so even though Whitney tested negative, doctors treated him anyway. The vertigo, or whatever it was, slowly dissipated, but the punishing fatigue remained. Routine lab tests all came back negative. One doctor told him there was nothing wrong with him.
“At first, I thought it was an intestinal parasite,” Ron explained, but the medications didn’t help. “Eventually, I talked to one of his doctors in India, who said his lab tests were all negative. We tested for Lyme disease multiple times. That came back negative.” Whitney, growing more frustrated with Western medicine, then suddenly disappeared again. A friend in India had told him about this natural healer, a shaman in Guatemala who could cure him. It was a short trip.
“The trip was a disaster,” Ashley told me one time when we met for coffee in downtown Palo Alto, at one of those Silicon Valley wide-open rooms, filled with computer scientists tapping away on laptops. “He grew sicker and sicker, until he was stuck in some fleabag hotel in Guatemala City. He was stuck there for twelve days until he got better enough to come home. Whitney’s still pissed at himself for going. He got so much sicker.”
Back in San Francisco, a new round of doctor’s appointments began in earnest. Ron insisted he get an endoscopy and a colonoscopy. Results were negative. Whitney’s health would go up and down, but he refused to move home with his parents. At some point, he got a temporary job working as a paid organizer in Carson City, Nevada, for then Senator Barack Obama’s presidential campaign. Obama was one of his heroes. His health still wasn’t good, but he continued to push himself.
Finally, Whitney had to accept that he could no longer live the life he longed for, one of travel and adventure. He left school and relocated to Berkeley to set up a part-time wedding photography business, leaving time to figure out how to get better. His business did well at first. He set up a website and began to draw clients. He liked the work, and his clients liked him. They appreciated his attention to detail, his storytelling skills, his open personality. He won more awards for his work and was able to maintain some semblance of the independence he longed for. But it was getting harder. The twelve-hour work days photographing weddings sent him crashing sometimes for a week, meaning he could barely get out of bed.
Any leftover en
ergy went into navigating the medical scene. He visited one physician after the other, racking up scores of appointments and blood draws and medical costs. All tests came back negative. Physicians sent him to psychiatrists. The psychiatrists sent him back to the medical doctors. He tried all kinds of natural remedies, all kinds of changes to his diet, medications, exercise, lack of exercise. Nothing helped, and no one had any answers. His frustration levels climbed. Cardiovascular exercise, in particular, sent him crashing. And even when he could sleep, he felt no better.
“Initially, I still thought the doctors should be able to figure this out,” Ron told me. “I supported him and took him to appointments when he could no longer drive. A few told him he was imagining he was sick. That he wasn’t eating because he didn’t want to. One said he could cure him with vitamin C. Another told him his jaw was pressing on his nerves, causing all of his problems. I told him to stop listening to these fringe doctors. But he was desperate for answers.”
Daily living became a challenge; cooking a single meal was a struggle. His sister would stop by to help him clean when she could. Friends came over to wash his dishes. But as time passed, friends grew frustrated with him and slowly began to fade away. He was very thin but otherwise looked fine, and they just didn’t get how sick he was. In reality, Whitney barely had enough energy to get through each day.
And then he didn’t.
