by Tracie White
“When I walk in the room, he’s still as death,” Ron told me before he left. “If his feet are left uncovered, it means he wants me to change his socks.” Janet explained how it took awhile for Whitney to prepare mentally for someone to enter his room to prevent him from “crashing.” I didn’t know what this meant, but it sounded bad. She said they would sit in the hallway outside his door and peer through the keyhole to watch for Whitney’s signal that it was OK to enter. This was hard to imagine, so I asked if I could see how it worked. I followed Ron to the hallway that led to Whitney’s room; then he signaled for me to watch from there.
Ron didn’t enter Whitney’s bedroom right away. Instead he sat on a chair outside the door and peeked through a keyhole waiting for his son to find the strength to sit up and pull a blanket over his shoulders, signaling it was OK to come inside. I could see it was one of those old-fashioned keyholes big enough to see through.
“He can hear me sitting outside,” Ron explained to me later. “It can take him a long time to prepare. Sometimes I wait for hours at the door. I once watched him take thirty minutes to move his cap from his lap to his head.”
After some time had passed, I left Ron waiting there and returned to the library to join Janet on the couch. It was getting late, and I had a long drive back home to Santa Cruz that night. As I stood to go, Janet pointed to a book on one of the shelves titled Osler’s Web, which had been written decades ago by Hillary Johnson, an investigative reporter who had CFS herself. “The folks in the patient community think of it as their Bible,” she said. “It tells the story of how the medical establishment failed this disease.”
She told me that we should take another look at the back of the house before I left. When I entered the kitchen, I realized that it had basically been transformed into a hospital ward for Whitney. The large, wide-open space was filled with boxes of syringes and medicine bottles. Just off the kitchen, a closed door led down a short hallway to Whitney’s room. Janet put her finger to her lips telling me to shush and softly opened the door.
I followed her down the hallway, and ever so gently she opened the door to Whitney’s bedroom. From the hallway I caught a glimpse of him from behind. Ron was on his knees at his side fiddling with the IV line. Whitney didn’t see me. He was sitting up hunched over in bed, his bare spine a long string of white pebbles dripping down from thin neck to slender hips. That was in the spring of 2016, when his six-foot-three-inch frame weighed just 140 pounds, and he was starving to death. I wouldn’t see him again for two years.
The magazine article I was writing, “The Puzzle Solver,” was published that spring, but that was only the beginning of the story. Even after the article, I’d think about Ron’s words and Whitney’s years of complete solitude. I’d go home at night and hug my son, who was now at an age when he was thinking about his career and starting real life. I couldn’t imagine being in Janet’s place, but sometimes I thought about it. I wanted to do something to help. I needed to talk to more people who had the disease. Few in the medical community had taken it seriously, and there weren’t that many places to look. I needed to know if they were experiencing what I had seen in Whitney’s room. When I saw Whitney, I knew there was no way he could just be depressed, as some had suggested. He was suffering, and it was beyond mental anguish. Something was eating him alive.
I reached out to Laura Hillenbrand. In addition to being a CFS survivor, she is the best-selling author of Seabiscuit and Unbroken. She had written about her struggles with a similar severe case of CFS in a 2003 New Yorker article, “A Sudden Illness,” which I remembered reading. She had also written entire books while sick in bed. I emailed her publisher and received a response back quickly that she’d be willing to talk to me.
She was a nineteen-year-old student at Kenyon College in Ohio when she first got sick. One morning she woke up and couldn’t sit up in bed. There were chills, swollen lymph nodes, dizziness. The campus physician ran test after test but couldn’t find anything. As time passed, she grew too weak to continue her studies, dropped out of college, and moved home to Maryland to live with her mother. She lost twenty pounds. Her lymph nodes stayed painfully swollen. At night, she had chills, and the ground swayed.
“Sometimes I’d look at words or pictures but see only meaningless shapes. I’d stare at clocks and not understand what the positions of the hands meant.… Words from different parts of the page appeared to be grouped together in bizarre sentences: ‘Endangered Condors Charge in Shotgun Killing,’” she wrote in the article.
A doctor said the problem was in her mind and sent her to a psychiatrist. The psychiatrist told her to see another doctor. She saw more doctors. Medical tests all came back negative. Finally, a doctor diagnosed something called Epstein-Barr virus syndrome. I didn’t yet know what type of virus this was, but viruses, I knew, caused infectious diseases.
He gave her supplements, but they didn’t help. Finally, she began seeing different specialists. After a lengthy exam with an infectious disease specialist at Johns Hopkins, she was diagnosed with CFS. He too suspected that it was viral in origin. She was in her thirties when she wrote the article.
It had been more than a decade after the article was published, and I didn’t know how she’d feel talking about it when I called. All that pain and suffering, she told me, has brought with it at least one gift of which she’s proud.
“The experience of suffering has brought me great compassion for the suffering of others,” she said.
Then, matter-of-factly she described to me what it felt like to be trapped in bed with severe CFS.
“The exhaustion is so profound, it’s a struggle to breathe. It’s a struggle just to lie there. Every effort goes into just staying alive.” At first, she was angry at family and friends who had abandoned her. Angry at doctors who told her she was crazy. “It was arrogance paired with ignorance. The easiest way to deal with someone with this disease is to deposit them in the waste bin of psychiatric disorders.”
I thought of Whitney lying in bed. How had she survived all this?, I wanted—I needed to know. I asked her about suicide, and she said, yes, she had thought about it. But somehow she got better enough so that she could begin to form sentences in her mind and write stories from bed. It was excruciatingly slow work; CFS made everything she did slow. And so she chose to write about fast things. She used to be an athlete, and she missed motion so badly. So she wrote about a racehorse and an Olympic runner. And then, after being unable to leave Washington, DC, for more than twenty-five years, she very slowly began to make plans to move. It was a long, arduous path, she said, that led to her eventual limited recovery, a combination of new medications, constant restraint and patience, tiny steps forward over years. When I talked to her, she had just made a cross-country car trip from the East Coast to a new home in Oregon with her boyfriend. She prepared two years for that trip to deal with her vertigo, taking practice car trips beginning with five minutes, then adding a minute or two. Every trip, she said, was a whirling nightmare, but it worked.
“We drove 4,300 miles,” she told me, the amazement still lingering in her voice. “Through the Rockies and the Badlands all the way to Oregon.”
“That’s so wonderful” was all I said, but my mind went right back to Whitney.
The phone call had made me hopeful. If Hillenbrand could feel better, have a relationship, and travel again, so could Whitney, right? I had a number I had read in my mind: twenty million people worldwide suffering from CFS. If they could be cured, that would change so many lives, but there was so little known about a cure.
Bits and pieces about this mysterious disease continued to nag at me as time passed. I had read that a chronic fatigue syndrome “epidemic” had first started in Incline Village, a small tourist town on the shores of Lake Tahoe in the 1980s. That was just a short four-hour drive to the ski slopes for me, a trip I had done many times as a college student at Berkeley. Maybe there was a trail to unraveling Whitney’s illness, one that unknowingly start
ed there, could circle back to Ron’s laboratory in the building just across the street from my office, and end with Whitney and whatever story was hiding with him inside that bedroom. If Hillenbrand got better, then there was hope for Whitney, wasn’t there?
Chapter 2
The Invisible Patient
Two years later
THICK, DARK LINES. THAT was all I saw at first. I pressed my eye to the keyhole just below the brass doorknob that opened to Whitney Dafoe’s bedroom, where he had been sequestered for five years. I leaned back in the folding chair and closed my eyes. The dark lines slowly came into focus, just above a pair of deep, blue eyes—eyes like his father’s. Ashley had always been jealous of her brother’s long, black lashes, and I understood why. They were lovely. Those eyelashes, Whitney’s eyes, were blocking my view into his room, I realized. I was that close to him.
It had been two years since I first visited Whitney’s family. During that time, he had remained too sick for me to interview him, but still I found myself driving my Honda back to the old house in Professorville, trying to better understand the mystery of the invisible patient living there. I watched repeatedly as both Ron and Janet, sometimes Ashley, sat outside his door, peering through the keyhole, waiting for Whitney to signal it was OK to enter. Now it was my turn.
Janet had scheduled a surgical procedure for Whitney to have a new feeding tube inserted to replace his old one on this day in December. Over the two years since that first feeding tube was inserted, the plastic tubes kept breaking, and Whitney would need to make an emergency trip back to the hospital to get a new one inserted. The tubes just aren’t built sturdy enough to last for years, and without them he could die. So Janet scheduled the trips to replace the feeding tubes before they broke once every three months. This was the only time Whitney ever left his room.
As the day’s organizer, Janet was hypervigilant, constantly running interference between the timing of the ambulance drivers, the surgery appointment, and preparing Whitney for the day without making him suffer more than he already had to. While Janet was busy on the phone with the ambulance service, I walked over to join Ron in the kitchen. He wasn’t feeling well when I had first arrived, and was lying on his back on the floor. He had vertigo and was dizzy and nauseous, his gray hair ruffled. “I’m nervous,” I finally whispered to Ron.
“Me too,” he whispered back, with a smile.
I’d entered that nebulous area, where the reporter gets too close to her subjects. I had become somewhat of a fixture in the old house, as the designated note taker to document this journey, constantly snooping around for clues in an ongoing obsession to learn as much as possible about Whitney. The family had grown used to me, maybe even had begun to like me, but I had never been in the house to witness these hectic trips to the hospital. I hoped that I might be able to see Whitney up close, maybe even meet him. Maybe not. Janet warned these ambulance trips were difficult for Whitney, and they never knew how much stimulus he could handle.
Any disruption to his schedule could make him crash, unable to think or move. Janet had all these balls in the air trying to get Whitney to the hospital, and I was trying not to be the extra one to make them all come tumbling down. Ashley would arrive shortly to help Ron clean Whitney’s room and change the bottom sheet on his bed after he left. My role that morning was to sit at the end of the hallway connecting Whitney’s bedroom to the kitchen until Ashley arrived. And not to be too quiet. Whitney would hear that someone was sitting outside his door and know he needed to prepare for the day. It’s a gentle way of waking him. He wouldn’t know it was me, of course, because he still didn’t know anything about me.
I took another deep breath and bent my head once more to the keyhole, feeling uncomfortably like a voyeur. But I was anxious to see more of Whitney than just a glimpse of him from the back.
A new image. A thin green string stretched across white skin. A necklace. A neck. Whitney was awake and moving. Oh my gosh, I almost gasped. I sat back up, took another breath, and leaned over again. Click. My breath came faster now. A patch of brown hair on the back of a head. The young man who had disappeared behind this door so many years ago had grown older. His hair was thinning now, perhaps from aging or maybe just from years of lying still on his back, his head resting flat on a pillow.
Piece by piece, image by image the invisible patient began to appear. In fact, he wasn’t invisible at all. He was flesh and blood, water and bone, blood and cells and DNA. He had white skin and black lashes and wore a string necklace. He didn’t eat; a feeding tube kept him alive. He rarely slept. He couldn’t talk. Sound physically harmed him.
As the morning moved along, and the sun rose higher in the sky, I was replaced in my post at Whitney’s door by Janet. Ron, now recovered from his vertigo, was steadying himself by leaning against the island in the middle of their farmhouse-style kitchen to prepare his son’s medication, and I was watching him. Carefully, wire-rimmed glasses tipped low on his nose, he filled three syringes with liquid Ativan, an anti-anxiety medication. Tap, tap—he tapped a fingernail against the last plastic tube waiting for a single round bubble to float to the top of the liquid and pop. This was a prescribed drug for Whitney to relieve the added stress in preparation for his ambulance ride. Like many others with ME/CFS, Whitney experienced sensory processing disorders, and that was what made it difficult for him to tolerate sound, vibration, or touch. Just moving him from his bed was painful.
Ron looked up as Janet entered the kitchen; she patted him on the shoulder and took the three filled syringes. I heard her shuffle down the hall to Whitney’s bedroom. The couple, married almost fifty years, often move in tandem like this. One picking up where the other leaves off. A team.
Ashley arrived dressed in black yoga pants, her long blonde hair pulled back in a ponytail. With the grace of the ballet dancer she once was, she too crossed through the kitchen to the closed hallway door that leads to Whitney’s room. Her tiny, white fluff-ball of a dog Frankie was tucked under her arm and started to yap. Janet’s head popped out suddenly from behind the hallway door. She grinned and reached for the dog. She too was dressed in black, as were Ron and I because of Whitney’s sensitivity to colors. That was our uniform for the day. Janet squeezed Frankie tight, laughing as the dog’s long pink tongue washed her face. Ashley set Frankie down on the kitchen floor, and together they walked back to Whitney’s bedroom, with Ron following. Then Janet waved to me to follow.
“Stay outside of the bedroom in the hallway,” she instructed me. She’d told me earlier they’d discovered that Ativan did more than calm Whitney’s nerves. It also seemed to calm some of his sensory processing difficulties, making sounds and movement more bearable. When he took the drug, he could communicate with his eyes, and pantomime using his hands and arms and facial expressions.
I watched carefully from the door as the family, huddled together in Whitney’s small bedroom, gathered around his bed as if in prayer. These moments, I knew, were so rare, they were almost sacred, and emotions ran raw. Ashley sat cross-legged on the floor in front of her brother’s bed, her eyes rimmed in red from tears. Ron, smiling softly, reclined on the carpeted floor just behind her, his long legs stretched out straight. His gaze drifted outside to the backyard. The winter sun sat on the leaves of an oak tree, painting the room’s carpet with reds and gold. Janet stood next to the bed, beaming down at her beloved boy, waiting for him to acknowledge them. After the drug worked its way into his blood system, Whitney emerged from his comatose-like state. His eyes opened. The family had told me that usually, at this point, he would look up at his dad with his eyebrows raised, asking, Is there a cure yet? His father would shake his head no, then make fist pumps with his hands, meaning he’s working hard. And then Whitney would begin to pump his fists too, asking for his dad to work harder. Then they joined together, fists pumping out like boxers. A few hours later, as the drug began to wear off, Whitney’s newfound energy would slip away. In tears, he would head back to the abyss. Ron, Janet,
and Ashley all would begin to sob. And then, suddenly, he was gone, alone again in his comatose-like state.
But today was different. He raised his hands to his face and clicked an invisible camera. Ashley sprinted from the room to get a real camera, her high-end Nikon. I couldn’t believe what I was witnessing. I had only expected to see Whitney alert for a few minutes; now he was sitting smiling and interacting with his family. Tears began to fill my eyes. He was still unable to speak, but through pantomime he told them that he wanted a photograph of the family together. He could not hold the camera, but from his bed with two ice packs covering his concave stomach, he gave instructions to Ashley on just how to stage each photograph. His hands motioned his parents to move in together for a shot. The professional photographer still knew how to command a room. I could feel a hope fill the room. Ashley even laughed.
Early on, before he got too sick, Whitney had begun to document his illness with plans of someday making his own film about the disease. Now it appeared he still wanted to tell his own story. Maybe I could help him.
When the ambulance crew arrived, I left my hallway post and walked out the kitchen door to go around the backyard, past the pool, to a small patio just outside Whitney’s back bedroom door, where he’d exit on a gurney.
I waited there, the silence deafening. A squirrel crashed through the redwood trees. A black crow cawed once, then twice. The thud of a squirrel landing shuddered up through the ground. Two EMTs appeared, exiting backward through Whitney’s door, carrying him on the gurney. He would be taken to El Camino Hospital in nearby Mountain View, unit 2B, an isolation room usually reserved for patients with contagious diseases. It would be quiet there. He was wrapped in two soft brown blankets and wearing noise-blocking headphones. Suddenly Whitney motioned for them to pause as his eyes lifted heavenward to stare up at the wide, blue sky, his mouth dropping open with awe. It took my breath away. I watched as the crisp winter air touched his cheek. The sun. The breeze. Then the wheels of the gurney started to roll, squelching over wet, soft leaves. The air hung damp, washed clean by a recent rain.
