by Tracie White
After that, he made his first ambulance ride to El Camino Hospital, where I had interviewed him several times by now. His doctor at the time, Andy Kogelnik, had found a surgeon who would do the operation, and Janet arranged the ambulance ride. Whitney wore his sound-blocking earphones, and his mom wrapped him up in his favorite soft, fuzzy blanket. Dr. Kogelnik, who Whitney had come to love, came to their home to administer Ativan to help him tolerate the ride and the hospital procedure; then he followed along behind the ambulance. Whitney was fragile, but still he kept his eyes wide. For the first time in almost two years, Whitney was going outside. The ambulance drivers pushed him past the hydrangea bushes and the wisteria climbing the sides of the house.
Ashley snapped a photo of Whitney as they lifted him up into the ambulance on the gurney. He was staring up at the wide, blue sky, his jaw dropped open in awe. A sacred moment captured. Then she stored the image on her computer in a file folder filled with many other photographs of Whitney and his father, one with Ron on his knees at his son’s side, his hand resting across his heart.
By the time they got to the hospital, something about Whitney had changed. This was the first time he was given Ativan, and it transformed him.
His mother was amazed. “He was suddenly able to communicate through pantomime,” she told me. “He was making jokes and smiling. The effects wore off a few hours later, but Whitney could now use the drug about once a month to communicate. He was worried about addiction, so he didn’t want it any more than that.”
By then, it was the winter of 2016. Whitney’s story was getting out to the world. I would interview his parents for the first time and write about it. Whitney was becoming the ME/CFS poster child that Ashley had envisioned. The public relations campaign was underway to help raise money for Ron and his ME/CFS team at the lab. Ashley, Janet, and Linda Tannenbaum (who founded a nonprofit to help people with the disease) had started to reach out to the media, sharing his story and the photographs. And some coverage had begun to trickle out. That’s when the local Palo Alto Times ran the story that my editor at Stanford Medicine magazine would read, leading me to write another one. I would read the Washington Post’s story and see one aired on the BBC. Whitney appeared in a ME/CFS documentary titled Forgotten Plague, his condition so fraught it caused the codirector to cry.
The Dafoe-Davis house, by then, had started to draw people to it as well. Janet reached out through social media to others sick and lost, angry and determined to battle this same disease. I sat on the couch in Ron and Janet’s library one night and listened to a reporter from Germany interview them for a magazine story. Another day, I’d sit across from a severely ill ME/CFS patient from England, Ben Howell, who was lying on the couch, the trip across the ocean causing him to crash. He told me about how he’d been prescribed graded-exercise therapy in the UK, and it had made him much worse. Ben had connected with Janet over social media and was so inspired by Ron’s research efforts that he had risked his health to travel across the world to meet him. He stayed for a month, visiting doctors, hoping to get better treatment than in the UK.
The published photos of Whitney and Ron captured people’s hearts, the stories captured their minds, and slowly donations began to dribble in to the Open Medicine Foundation. Most of the money came from patients and their caregivers. Ron now had the funding he needed to conduct his Big Data study. He started to recruit other researchers, like the renowned immunologist Mark Davis at Stanford, a floppy-haired genius who had discovered how immune cells targeted invading infections like bacteria or viruses. Ron needed more people to help out. Others sick like Whitney had begun to put their faith in him, and he couldn’t let them down.
Whitney knew little of any of this when it first happened. Most of his life was spent in isolation, both physically and emotionally. His family was unable to tell him about the rejected NIH grants or the successful new funding, or the new researchers who had signed up to join his dad’s scientific quest to unravel ME/CFS. He didn’t even happen to know who the US president was at the time. That was before he tried Ativan.
More than two years later, after visiting Whitney several times at the hospital, I’d begun to know what to expect. After he got settled into his hospital bed, smiling at the nurses as they checked out his vital signs, he’d ask his mother to leave the room for a bit so we could have some private time. Janet would bristle at his request, loath to lose any of the rare time when she could communicate with her son. But she understood he was a grown man, and our time together seemed to provide him with some kind of a private life.
As months passed, Whitney grew better at pantomiming, and I started to understand more often what he was trying to communicate. Often he wanted me to contact an old girlfriend or friend of his. He hadn’t connected with any of them for so long. It was like someone trying to reach out from the grave to touch the lives of those he loved and longed for. It was my job to find them, tell them he was still alive and he loved them still. He figured a reporter should be good at that. It wasn’t really my job and didn’t help with finding out more information about ME/CFS or even about him. However, each time I’d go home, I’d have an image of Whitney lying in bed, waiting for me to bring him news of his past. Always, I saw my own son’s face in his and did my best to comply.
During one of these hospital visits, Whitney seemed more amped up than usual. It seemed that there was a story he really wanted to share or another old friend he really wanted me to find. I knew that sometimes he’d spend hours on end lying in bed memorizing things he wanted to say when he was on Ativan, even the ways he wanted to say them. Then, because his time to communicate was so short, he grew agitated when we didn’t understand quickly enough what he was trying to say.
Ashley was in the room with me, sitting on the end of his hospital bed, and we both struggled to untangle what it was Whitney wanted to tell us from his pantomiming. First, he drew circles in the air, which I knew by now meant he was in India, riding a motorcycle. Then he waggled his head back and forth, looking silly, but quite happy when we guessed he was pantomiming a monk. Then he shook his head. No, this wasn’t just any monk, he shook his head harder. This was a special monk who changed his life. Whitney brought his fingertips together to create the tip top of a mountain, and I traveled in my mind back to those Himalayan mountains, where at the early months of his grand adventure he’d had such an amazing time.
As we translated it, Whitney’s story began to emerge. He rode his motorcycle into the Himalayas and then traded it in for a backpack, hiking up further into the clouds and finally reaching a tiny town at the tip-top of a mountain. There were six other backpackers with him that day. He held up six fingers until we clearly repeated, “Six hikers.” The group sat in a temple at the top of a mountain in a semicircle around this young monk. They stayed there with him for two fingers—two months. I imagined Whitney up there, learning some secrets of life that I’d never understand, when he suddenly threw his hands violently up in the air, filling his cheeks up with air, then blowing out hard. I had no idea what this meant, but Ashley knew. It meant that the monk blew Whitney’s mind. Then he spelled out the name of one of his fellow travelers—M A R T A—on his brown blanket. And Ashley said she’d try to find her email in Whitney’s phone and connect the two of us.
Whitney’s friend was Marta Galligni, an Italian who spent much of her life as a spiritual traveler. Ashley emailed Marta, and I was working at home on my laptop one night when I saw the reply, with two photos attached, and quickly clicked it open to read:
“Hi, last night I read the mail about Whitney and got shocked,” Marta wrote. She was living in Italy working as a waitress saving money so that she could return to her spiritual travels in India. Yes, she remembered Whitney—of course. But she hadn’t seen him in so long, and she had no idea he was sick.
“Oh my god, I have no words, I have thought of Whitney so much in these years,” she wrote. “Can you tell him that I’m trying to get in contact with Shenyen? Shenyen is
an English Buddhist monk, he was Whitney’s first teacher in Buddhist philosophy. I think he would definitely be perfect for telling you more about Whitney.”
I smiled as I read the email, knowing how excited Whitney would be that she had written back. When I clicked open the photograph, the first showed a small group of young hikers lounging on boulders at the top of a mountain with sweeping vistas of villages far below. The second was a small group of backpackers sitting cross-legged on the ground beside a bald headed, fit-looking man wearing an orange tunic. Whitney was in both shots, dressed in the same plain white T-shirt and khaki pants and with a scruffy beard. He looked relaxed and happy, at peace with the world. I would talk to Marta later in Italy during one of her breaks from work. I wanted to hear about this monk that Whitney had grown so animated about, and she was happy to tell me.
“This monk was very special,” she told me, in her heavy Italian accent. “He changed my life. I think for Whitney it was the same. Buddhist philosophy is very antique and from the East. This guy, Shenyen, he was able to translate the very old teachings into something that could be understood by us. We were young and not from the East. We were from Italy, and America, Australia and Russia. Shenyen was very clever. He had a scientific approach to Buddhism. I met a lot of teachers, but none like him.” She reminisced a bit more about those happy days with Whitney before she had to rush back to waiting tables, but first added, “Whitney, he was such a sweet guy. I loved him. So different from other young kids. I saw that he was searching for something.” I asked her one last question before she hung up—mostly it was a question that I wanted answered for myself.
“Do you think Whitney might be using what he learned from this monk to help him live through so many years of pain and isolation?”
Marta quickly answered, “Oh, I would definitely believe so. I believe that Whitney has been practicing all along. Buddhism is only in the mind. His body has left him. He has only his mind.” I thanked her and said I would tell Whitney about our talk and share the photographs with him if I could.
“Life is really strange,” she said. “Give him my love, big, big love. Ciao.”
When I saw Whitney in the hospital again, a few months later, I told him I’d gotten ahold of Marta, and his eyes grew wide. I read the emails and then asked him if he wanted to see the photographs. Usually it was too difficult for Whitney to look at photographs, but this time he nodded yes. When I showed him the photo of his group of travelers at the top of a mountain, a beautiful valley down below, he burst out in sobs. Then he grew angry. He jabbed his index finger at the image of himself, poking at it hard over and over again. That’s the real me, he meant. Then he pounded on his own chest, shaking his head no. This is not me. I’m not this pale, sick man, lying in a hospital bed, strapped to monitors, thin and frail. Get me out.
Chapter 11
Vindication
ON A GORGEOUS SPRING day in 2019, I stood on a street outside the Capitol, the stately dome-shaped home of the US Congress, breathing in the sweet scent of DC’s famous cherry blossoms, wondering how exactly it was I had arrived at this spot. The roads were choked with tourists stuck in commute-hour traffic on a Wednesday morning, anxious to see the cherry trees covered with light pink clouds of cotton balls, which also decorated the streets and the wide walkways connecting the Library of Congress to the Capitol.
It was ME/CFS Advocacy Day in the nation’s capital, and I was there to get a civics lesson on how to change government. Members of two advocacy groups—Solve ME/CFS Initiative and #MEAction—(those members who were well enough) had traveled to DC to talk to their legislators, raise awareness, and ask for more research funding. There were hundreds of us, wearing purple ME/CFS T-shirts, the majority women, some in wheelchairs, others using canes or wearing masks to protect themselves from germs. Many more looked perfectly healthy when, in fact, they were quite sick. We came from across the nation—from California to Minnesota and Texas to New York.
It was the day before a landmark NIH conference, one that would draw elite researchers, including Ron Davis, from around the globe to discuss scientific progress made toward finding a cure for the serious biological disease with a bizarre past, ME/CFS. I expected there would be a few researchers from the past as well, looking for vindication. Dan Peterson from Incline Village had told me once that back in the early days, when he first started publishing studies, researchers at the NIH, more inclined to believe the so-called psychogenic theory of ME/CFS, used to pin them up on the wall and throw darts at them.
The morning was clear and sunny when I climbed onto a shuttle with other advocates outside the Bethesda Marriott Hotel, headed to the Capitol, many of us nervous about delivering our three-minute personal stories to legislators on the Hill. Brian Vastag, a former Washington Post reporter who has ME/CFS, waited in line with me for the shuttle, and we chatted about the new ME/CFS study at the NIH that he was participating in. We hadn’t met before, but I recognized him from his photograph in the Post back in 2015, which accompanied an article he’d written titled: “I’m Disabled; Can NIH Spare a Few Dimes?”
The article was actually written as a letter to NIH director Francis Collins, begging him to increase ME/CFS research funding. “Dear Dr. Collins,” it began. Previously a communications writer for the NIH, Brian hoped that his story would catch Collins’s attention; much like Ron’s rejected NIH grants, it did. “I’ve long appreciated how the NIH helps the world…,” he wrote. “Lately, though, my love for your august institution has been strained. You see, I’ve been felled by the most forlorn of orphan illnesses.”
For me, this day was long in coming. I had traveled far to get here—not just physically but emotionally as well—starting with that first visit with Ron and Janet at their Palo Alto home, and now, here I was in the nation’s capital. It was clear to me that just reporting on this American tragedy was no longer enough. It was time to leave the sidelines of objectivity and step out into the fray.
Janet had called me just before I left California. She was frustrated. She wished she could travel to DC as part of the advocacy community. But, like so many other caregivers, she would instead be forced to stay home, to provide care to her son, and to continue to advocate from her computer, reposting on Twitter, Facebook, and other social media sites as news came out from the conference. This was her job: retelling Whitney’s story, railing against government missteps, insisting this disease finally get the attention it deserves. “There are thousands and thousands of us who can’t come in person and advocate,” she said. “You’re just going to see the sick folks who mostly look fine.”
It was true. Like the young yoga instructor from Washington, DC, who sat next to me on the shuttle ride that morning, who looked fine. She’d come to tell her story to her legislator. She first got sick when she was in her early twenties. Her dad got her in to see doctors at a prestigious research center.
“Those doctors, they told me I was crazy,” she said. “All my labs came back normal. It was all like, ‘Sorry, go see a shrink.’” Like so many others with this disease, including Whitney, she was anxious for me to know how active she’d been prior to getting sick. She wasn’t a slacker or a malingerer. She ran cross-country in high school and studied science in college. She loved to travel. But now she was on Medicaid and had to keep her goals much smaller.
“I just want to wake up not feeling like I’ve been run over by a truck,” she told me.
Tora Huntington, standing next to the two of us in the shuttle, was a middle-aged woman from Massachusetts who had come to speak for her sister, who had been sick with ME/CFS for ten years. Tora asked us if she could practice reading the three-minute personal story she would recount to her legislator later that day.
It was obvious she was nervous. All of us were. I had brought some photos of Whitney to share during my own presentation and planned out what to say as well.
“I’m a retired kindergarten teacher,” she said, reading from a notepad in a quavering voice. “My siste
r is brilliant. She has a PhD in clinical psychology. She worked with children on a Native American reservation and was developing autism programs. Ten years ago, at fifty-two, she was struck suddenly with ME/CFS. We will never get the gifts that she could have given to the world. There is so much living that doesn’t get done because of this disease. We are here to raise awareness. To ask for more funding.” The despair in her eyes when she looked up left both the yoga instructor and me misty-eyed.
After the shuttle dropped us all off at Capitol Hill, we hiked up First Street Northeast to the government’s Cannon House Office Building, where a room had been reserved for the group, since so many of the sick needed a place to rest. It was late morning, and already the room was crowded with exhausted advocates. Some were lying on the floor on top of sleeping bags; others were sipping water and wearing noise-blocking headphones. The room was designed to be a quiet haven for those oversensitive to sound and struggling physically to make it through the day, but the hallways outside reverberated with the click-clacking of high-heeled shoes and the general racket of busy politicians and lobbyists rushing about on a business day. The lack of a reserved shuttle to get back to the hotel at the end of the long day loomed large, overwhelming many who were too exhausted to navigate the crowded subway system in order to get back to their hotel rooms.