by Tracie White
On November 8, 2010, Whitney posted on his wedding photography Facebook page: “So you may have noticed that I haven’t been posting weddings lately. I’ve gotten really sick with something I picked up while traveling in India, and I am going on sick leave until I get better. So no weddings this coming summer unfortunately.” There would be no more weddings for Whitney, not even his sister’s. For three years, he’d been searching intensely for answers, and still he had no idea what was wrong with him.
Chapter 4
A Mysterious Diagnosis
ON A DAY IN August 2010, Whitney made yet another doctor’s appointment, this one with someone new in an office across the San Francisco Bay from Berkeley in Marin County. I liked to imagine Whitney driving across the Richmond–San Rafael Bridge that day with the radio blaring. He was quite ill but still able to drive himself places at the time, determined to keep his independence, determined to find answers. I had driven over the same bridge many times during my college days to visit a boyfriend in Marin County and remember its stunning views of the San Francisco skyline to the left and the notorious San Quentin prison sitting on the rocky shoreline up ahead. I hoped the view brought Whitney a bit of peace.
The appointment was in Santa Rosa with Dr. Eric Gordon, a family practice physician and one of those rare doctors who specializes in the care of patients with chronic diseases. In particular, he focuses on patients who are sick but, for whatever reason, whose routine lab tests all come back negative, showing nothing wrong. This usually meant patients with autoimmune disorders or diseases like fibromyalgia and what Gordon was referring to at the time as CFIDS (chronic fatigue immune dysfunction syndrome) aka CFS, yet another name for the disease. That day the doctor sat and listened to Whitney describe his years of illness, the unrelenting fatigue, the brain fog, and stomach pain he’d been living through. How his fatigue worsened with any sort of exercise. The doctor nodded his head in understanding as Whitney talked. He’d heard similar stories many times from patients. At some point, he scribbled CFIDS in the margins of Whitney’s medical chart and then told Whitney he knew what was wrong with him.
The first time I met Dr. Gordon was at the first of Ron’s international ME/CFS conferences held on the Stanford campus years later. Ashley was moderating. Janet sat up front with Ron.
The conference attracted scores of CFS patients, their caregivers, and family members looking for hope. There were patients in wheelchairs and others in special reclining chairs designed to prevent fainting and nausea. Heads rested on shoulders of loved ones. A tiny service puppy on a plaid blanket curled up on a middle-aged woman’s lap. During breaks, patients stretched out on blankets outside on the campus lawn. Janet brought lounge chairs from home and set them up outside. Many, many more patients, too sick to attend, listened to the conference streaming live online.
During a break in the scientific presentations, I spotted Dr. Gordon chatting in hushed tones with Dr. Dan Peterson, whom I recognized as one of the two original Incline Village doctors at the center of the outbreak on the shores of Lake Tahoe three decades before. I went back and joined them, introduced myself, then, with their permission, listened in.
“When I apply for grants I never call it CFS,” Peterson said. Gordon nodded. For three decades, prejudice and discrimination toward the illness have continually roadblocked their work, they told me. They’d been forced to learn work-arounds.
“Do you think attitudes are finally changing?,” I asked. They both chuckled softly.
“We will have to wait and see,” Peterson said.
During lunch, I sat next to Dr. Gordon and asked him if he remembered that first appointment he had with Whitney.
“I remember it well,” he said. “He was easy to diagnose.” Dr. Gordon was a kind man, I could tell right off, one of those doctors who really care about their patients and put the extra time in to listen. He wore glasses and spoke gently, often using his hands to express himself. He’d spent a career listening to patients with chronic illnesses and was a good listener.
“People with post-exertional malaise, who are otherwise fairly healthy, usually have this disease. Other diseases, if you rest, you feel better,” he explained. Different traumas can trigger the disease, he said, like infectious diseases or even car accidents. “I’ve seen a lot of patients like Whitney get sick the first time in India or somewhere in Southeast Asia. It usually sounds like a parasite triggers it, and I think it often is.” Then he repeated himself.
“He was easy to diagnose,” he said. “But I couldn’t help him.”
Not long after his diagnosis Whitney was finally forced to give up his independence. He just couldn’t take care of himself anymore. He moved out of his rental in Berkeley and settled into the back bedroom in his childhood home, the one with the view of the pool and a shady oak tree out back.
Over the years to come, squirrels would gnaw on the wooden porch that leads off the bedroom, the annoying noise painful to him. Cooking smells would drift in under the door from the kitchen, causing him to crash. On a crisp fall day, two or three wasps would sneak inside from a nest burrowed into his closet from a crook in the outside wall, tiptoeing slowly across his sunken, bare chest. Whitney would lie still and watch them, amused. From his bed, he would gaze out at the African daisies and delphiniums he once planted in the garden during happier days, as they bloomed, over and over and over again.
The internet was now a lifeline, somewhere he could research his strange, new illness and connect with others like him. He searched for new treatments to try and more research to investigate. He asked for advice from patients with ME/CFS in chat rooms and found some solace for the growing loneliness that would soon come to envelop him.
While having a diagnosis had brought him renewed hope, learning just how little was known about the disease, and the lack of official treatments, began to dampen it. He was learning how his illness had been ignored; how patients suffered, not only incredible physical pain, but the mental anguish of not being believed, of being mocked and stigmatized. And how many were simply abandoned.
When he first moved back home, Whitney’s fatigue was worsening daily, and excruciating pains in his legs began to hobble him. In one chat room, he posted: “I saw my GP the other day and he said he wouldn’t help me get a wheelchair covered by insurance because he wouldn’t feel comfortable with it because he thinks I should walk.… I was like, ‘Hey, I think I should too, but that doesn’t change anything.’ %**##$.”
Everything Whitney learned, he shared with his dad, the smartest person he knew. His dad always had the right answer to difficult questions. And Whitney’s faith in Ron was unshakable. When Ron came home in the afternoons to help care for Whitney, the two spent hours talking trying to figure out answers. Whitney shared the stories of others he’d come in contact with. Often their stories were tragic and, in fact, scared the crap out of him.
As I read through Whitney’s comments in these chat rooms, I would come to hear one thing repeated over and over again: to die of this illness is atypical, but to hover in an in-between state experiencing a “living death” for years or decades is typical.
Curious to hear the story of how Ron first decided to take on researching the disease himself, I asked him about it during one of our meetings in his office.
“What made you take the leap and start your own investigations?” I asked. He grew thoughtful.
“I was stunned by the lack of medical research on the disease,” he told me. “Then I checked into how much NIH money was available to fund research.” As an experienced researcher—one who had applied for and been granted many multimillion-dollar research grants from the National Institutes of Health—he expected there to be a certain amount of money for the numbers of patients. In 2011, while diseases like multiple sclerosis, with similar-sized patient populations, received $100 million per year, CFS was getting only $6 million. The amount was so small that he immediately understood why no one studied it. Scientists couldn’t afford to.
Whitney had tested positive for several virus antibodies, including the Epstein-Barr virus and the Human Herpesvirus 6, HHV-6. His immune system showed abnormally low activity levels of those so-called natural killer cells that fight off viruses and cancer cells. His immune system wasn’t working right. Exactly why, though, no one knew. He was prescribed various antiviral medications, including Valcyte and acyclovir. They were expensive, but Ron agreed that his son should try them.
They tried the experimental treatment rituximab, a drug therapy for certain cancers, which was shown by happenstance to help a patient with ME/CFS. The drug cost $7,550 per infusion, much of it not covered by insurance. Treatment involved getting infusions at Dr. Kogelnik’s office over a sixteen-month period. It didn’t help. His doctors prescribed different antibiotics, anti-inflammatories, supplements, and antidepressants. None of them helped. And Ron was beginning to lose faith that any doctor could help his son, even experts in ME/CFS who were doing their best with the limited options available.
At the same time, they tried all kinds of alternative medicines—acupuncture, Chinese herbal medicines, Tibetan medicine, and a Native American healing ceremony. They also consulted a mold expert after hearing that some ME/CFS patients were particularly vulnerable to mold. Some things helped a little. Most things didn’t.
Ron would come home in the afternoons and help Whitney put on compression socks to ease the pain in his legs. And continue to add the endless numbers of supplements and antibiotics and other drugs to his IV line. Whitney was diagnosed with sleep apnea and tried using a CPAP machine to help him breathe. After months of trying, he gave up. He just didn’t have enough energy to deal with it. Ron began to panic. He watched his son wasting away and couldn’t do anything to stop it.
Whitney still managed to find bits of joy listening to his music: he filled the empty hours by creating playlists on his iPod from bed. He liked to curate the lists to tell a story and named them things like Long Road Mix and Bummer Mix. He could eat some foods, although that was getting more difficult each day. Ice cream had been replaced by yogurt and constant stomach pain. But Ron was busy hatching new plans. He couldn’t stand by and watch his son’s endless suffering.
And so he got started on his own. I imagine him one night, shuffling out to his toolshed out back after setting up Whitney’s IV, filling his water containers, and changing his socks. Ron had set up a sort of makeshift science lab on his tool bench. It was cluttered out there, so he cleared out a space on the workbench, pushing aside his old wood-working tools. He showed me the centrifuge—a tool used for blood separation and analysis. It’s still there, small and round, rather old, but functional. It reminded me of one I’d used in a high school chemistry class.
“Is this where you built Whitney that beautiful oaken cradle that you guys keep inside the house?” I asked him.
“No, we hadn’t moved to this house yet, but these are the same tools,” Ron said, looking at one of the hammers nostalgically. He hadn’t been out here for awhile and was sort of embarrassed by the clutter. Plus he was always hesitant to talk about himself, so he laughed nervously when he added, “My dad was a carpenter. I’m good with my hands like he was.”
That’s how his scientific investigation first began. Once a week, after chatting with Whitney in his bedroom, he’d take a vial of his son’s blood, then carry it with him to the work shed out back, curious to see if he could find any molecular clues to the mystery. He’d watch it spin around fast in the centrifuge, separating into its different parts, and then he or Janet would get into the car and make the twenty-minute drive over to his lab for processing.
This is the way Ron has worked throughout his life. He would find the right tools to tinker with, in settings where he felt free to disappear into the imaginary three-dimensional worlds of scientific exploration. A place that feels safe to him, that feels like home. This is how he made his first big scientific discovery.
In 1970, his final year as a grad student at Caltech, Ron was in a cool, dark basement where he spent months tinkering around with the electron microscopes. They were huge at the time, the size of refrigerators, and rare—hard to get your hands on.
“I hated the hot summers in Pasadena,” Ron told me once. “So when it came time to choose a project, I picked a topic that entailed using the electron microscopes that needed to be kept in the basement for the cool temperatures.” He spent hours on end, days at a time, down in that basement, eventually cracking one of the most tricky genetic puzzles of the times, and pioneered a method for the physical mapping of the location of genes along DNA, one of the first mapping methods for DNA.
As Ron began to study his son’s blood cells, he also began to worry about how he would fund any future research. He set to work making plans for experiments and more advanced testing, getting his lab involved. He knew it would take a lot of money. He made plans to run every kind of available test in his high-tech Stanford lab on Whitney’s blood, searching for clues of what had gone so badly wrong in the cells’ molecular pathways that could lead to treatments or even cures. The list was long and complicated. Testing would include things like cytokine analysis, genome sequencing, microbiome sequencing, metabolomics, magnetic levitation profiling, PCR assays for any viruses, antibody assays for mycotoxins, and much more.
Over the years, Ron’s lab had developed a wealth of biotech inventions and advanced diagnostic testing tools. In 1989, Ron cofounded the Stanford Genome Technology Center with a large government grant to help build tools for the $3.8 billion Human Genome Project, the same project called by President Bill Clinton at its completion “the most wondrous map ever produced by humankind.” Ron became director of the lab in 1992 and has remained there since. The lab made a name for itself as a think tank for the creation of diagnostic tools to help battle human illness and pinpoint disease. It also became the launching pad for biotech scientists who would go on to develop successful new startups to advance medical care.
But now he was thinking about changing the course of his research. Exactly how to launch this new project kept him up nights. He needed a plan.
One afternoon, during a visit home from Hampshire College, Ashley was pushing Whitney in a wheelchair around their quiet Palo Alto neighborhood. It was a sunny spring day, the air perfumed by jasmine and wisteria. She couldn’t help but see all the beauty that was still alive in her sick brother. She planned to move home from Massachusetts after graduating and take care of him as much as she could.
The two had grown up best friends, and they would be forever. Her heart would always be with her brother. She was angry and scared about his condition, but still he inspired her. Living her life without Whitney in it was unimaginable. He had always had her back. Ashley was five years Whitney’s junior. Forever the little sister, she thought her older brother was the coolest ever. Still did. He was a gentle soul who never could hurt anyone or anything, not even a spider, she told me. He stuck up for little kids, saved abandoned animals, and befriended the misfits in high school. He was handsome, and the girls buzzed around him. When they were little, he used to tickle Ashley mercilessly and wrestle her down to the ground, and they’d both laugh hard. He was funny and fun and always in constant motion. Ashley would laugh, a bit wistfully, thinking back to their many hikes together. She missed so much about her brother. But she would hold on to all the parts of him that she had left. Ron had visited her at college when he was in Boston at a conference. He talked to her about his plans, and she knew they needed funding. Maybe she could help with that. She didn’t know much about raising that sort of money. But she knew that her dad was brilliant and that somehow they’d figure it all out.
That afternoon, as she was pushing Whitney through the neighborhood, she started talking.
“I think your story co
uld touch people,” she said to Whitney. He didn’t respond, but she could tell that he was listening. Her brother had always listened to her. He never made her feel like the annoying little sister. “You know, like celebrities do?” She could see him as like Michael J. Fox, the way he had raised so much awareness about Parkinson’s disease. It wasn’t only that she loved Whitney so much. Her brother could walk into a room and charm everyone. She was always proud of him. Just by being himself he seemed to be a magnet to others. She was more shy, but he’d light up a room. She knew her brother could never be invisible. They could raise millions of dollars for research. They could find a cure for his illness. She believed it with all of her heart.
She also knew Whitney was an intensely private person, and taking up the call to share all the details of his private life would give him pause. But, already it was too late for privacy. Whitney was a full-fledged ME/CFS activist by now. His mission was to fight against this disease and all those who denied it. Many times he’d shake his fist hard, to show that this was his fight. From the time he got diagnosed, she knew that he wanted to help the millions of others who were sick, not just himself.
“You know?” Ashley said again as they continued down the block. And he nodded in agreement.
The kitchen transformed into a pharmacy. The table overflowed with an arsenal of medications. A sweet, antiseptic smell crept into the air and stayed there. Whitney’s handwritten notes still remain stuck to the closed door of his bedroom from those years: “I don’t know what to say. I just feel pretty hopeless. It’s so hard not being able to take care of my stuff.”
The list of Whitney’s symptoms seemed to grow longer and longer the more Ron looked at them, which isn’t unusual for ME/CFS patients. Some say the list of possible ME/CFS symptoms can reach up to sixty. Whitney listed his once: dry eyes, inflamed gums, hair loss, digestive sensitivity, freezing feet and legs, leg pain (“It seems specific to walking; crawling doesn’t seem to trigger it.”), shortness of breath, lightheadedness, swollen glands, sore throats, poor sleep, and ever-increasing extreme fatigue.
