The Puzzle Solver

by Tracie White

  That summer, Peterson, prodded by his wife to take a much-needed vacation, got on an airplane and tried to relax. Instead, he spent the airplane ride reading Annals of Internal Medicine, continually looking for answers. What he read there almost made him turn around and fly right back home.

  Two studies, one by Stephen Straus, MD, a virologist at the National Institutes of Health, the other by James Jones of the National Jewish Hospital and Research Center in Denver, reported that the Epstein-Barr virus, the virus responsible for mononucleosis, was possibly also the cause of a chronic flu-like illness of unknown origin. Mononucleosis, or mono as it’s widely known, is an infectious disease that causes severe flu-like symptoms including headache, fatigue, and an alarming weakness.

  “I thought, well that’s exactly what our patients are acting like,” Peterson told me years later. “Like they had a case of mono that just didn’t get better.” Finally, he thought, here was something concrete. He called Cheney as soon as he could, and they made plans to test their patients for the virus. When results came back positive for EBV in many of their patients, Peterson picked up the phone and made that call to the CDC in Atlanta to ask for help.

  It took repeated calls and months of waiting, but finally the CDC sent two junior investigators, one of them Gary Holmes, who flew into town, met a few patients, collected blood samples, and returned to Atlanta after two weeks. They eventually reported no unusual results for EBV in the blood they collected, concluding they didn’t know what was causing this reported epidemic and that, in fact, maybe it wasn’t an epidemic at all.

  Janice and Gerry remember well how their hopes soared when they heard about the CDC investigators coming to town. Finally, they thought, they’d get some answers. Already, Dr. Peterson and Dr. Cheney were telling them they had this new disease called chronic Epstein-Barr virus syndrome. They wanted to know if EBV was really the cause of their sickness and whether there were any treatments or, they hoped, a cure. They met with the CDC investigators in Dr. Peterson’s exam room one day that fall, the two young doctors leaning back against the counter where the cotton ball containers and Q-tips were kept, their arms folded across their chests. To the Kennedys they looked “utterly bored.”

  “Do you have any idea what this might be?” Janice asked them, when they finished the exam.

  “Well, it could be anything, even hysteria,” Dr. Holmes replied. Janice sighed, and her shoulders slumped as she looked over at Gerry. Feeling utterly let down, the couple left the doctor’s office. By then, people in town had already begun to tell them that they weren’t sick—they were just crazy.

  The CDC investigation might just have faded away, but the Sacramento Bee got wind of what was happening in the small town and ran an article about it, headlined “Mystery Sickness Hits Tahoe.” It was picked up by the national wires, and the media frenzy began.

  The day after the story ran, the phone in the Peterson-Cheney clinic rang off the hook with calls from across the country. Physicians phoned about patients with similar symptoms, patients called freaked out they had the mystery illness. Local casinos called complaining about the bad publicity that would scare away tourists, their bread and butter. The local newspaper the Tahoe World quickly followed up with a story: “Truckee Teachers Recount ‘Malady,’” mentioning several teachers by name including the Kennedys. Irene Baker, a Truckee High teacher and friend of the Kennedys who was so sick she had to quit working before the school year was out, was quoted as saying: “It’s all I can do to go to the doctor, maybe stop at the store, and get back in bed.”

  Then the national press dropped in, literally.

  “One day in town a helicopter dropped out of the sky,” recounted Peterson, sporting a blond mustache and the typical ease of a native Californian, decades later. Reporters for the ABC news show 20/20 emerged from the helicopter and went in search of these unusual patients and their two doctors. The show was viewed in millions of American homes, and the Incline Village Chamber of Commerce went ballistic. But that was just the beginning. Coverage soon appeared in the Washington Post, the New York Times, and the Los Angeles Times. Eventually 60 Minutes weighed in. Tourism took a dive, and panic set in. “It was either, ‘Oh, we’re all going to catch it,’ or ‘Those doctors are crazy,’” Peterson said later. “We weren’t crazy. This was no hoax.”

  It was a story to die for, a bizarre illness in a pretty little resort town, and the media couldn’t get enough of it. The news flurry would last for several years before it tapered off. Various names cropped up for the mystery illness, from the “Tahoe malady” to the crass but what was most catchy “yuppie flu.”

  The Washington Post published an article in 1987: “Journalists have called it ‘the yuppie flu’ after the kind of people—young, ambitious, professional achievers, mostly in their thirties and forties and mostly female—who tend to get the condition.”

  Another article quoted a patient saying she felt like “Raggedy Ann with all the stuffing taken out,” and suddenly “Raggedy Ann Syndrome” was added to the name-calling. The more scientific name, chronic Epstein-Barr virus syndrome, didn’t take hold until later, when the disease began to grab the attention of some serious-minded scientific researchers.

  For Incline Village, though, it was already a most serious topic. The backlash from the community was swift and severe. The “crazy” doctors and their “lazy” patients became the target of blatant mockery if not outright anger by many in the Tahoe basin. An unnamed doctor in town was quoted in the Los Angeles Times saying that the two clinicians reporting the disease were perpetrating “a hoax.” The chairman of the Incline Village Visitors Bureau was quoted years later in the documentary I Remember Me, referring to Peterson and Cheney as those “quack doctors” who were ruining tourism, adding that the disease wasn’t even fatal and that it was “mostly with overweight women.”

  “The community was terrible to us,” said Kathleen Olson, a nurse working with Cheney and Peterson in the 1980s who said she received a phone call from Peterson’s son’s preschool on the day the Sacramento Bee story was published, demanding that he come pick up his son before he made the other kids sick. In nearby Truckee, it was no different. The sick teachers faced outright derision.

  “In Truckee everybody knew all about it,” Gerry told me. “Everybody had opinions about whether we were malingerers or were actually sick.” During those early years when the media continually drew attention to them, Gerry was battling symptoms of brain fog and severe fatigue, while Janice was completely disabled. He was struggling to go to work while doing the housework and putting ice packs on the swollen lymph nodes in his wife’s neck. In the winter he could barely lift a shovel to clear away the snow. He recalled watching with horror one afternoon in a Raley’s drugstore as a local realtor chewed out a dreadfully sick friend of his, who had the same illness, blaming her for scaring away business. After that, Gerry started shopping at two a.m.

  “I just wanted to be able to go shopping in peace,” he said.

  The Kennedys left their Truckee home, with the sweeping vistas from the living room window and the cross-country skiing steps outside their door, and crossed the mountain to the other side of the Donner summit below the snow line to a new home in Weimar in 1995. They still make the hour-long drive every few months to Incline Village to see Dr. Peterson, but they’ve managed to find some peace in the rural location, leaving both the snow-shoveling and the constant harassment behind. Peterson never did leave town, and during the thirty or so years since, the harassment has never completely subsided. He continues to live with the reputation as a “quack” from many in town. At the same time, he’s managed to treat more than eight thousand ME/CFS patients from around the world.

  “We just wanted to start over,” Gerry told me after the couple had welcomed me inside their home. Janice had taken my coat and asked me if I’d like a cup of tea. The home was comfortable and tidy with a frosty but well-tended garden visible through a sliding glass door that led to the backyar
d. She brought me green tea in a china cup, and Gerry smiled. The couple, married for more than fifty years now, worked in tandem, much like Janet and Ron. They glanced at each other, nodding in silent agreement, as they situated me on a couch. I thought of my own husband and smiled at how we cleared out the dishwasher together.

  “I’m sorry, but we’ve had some bad experiences with the media in the past,” Gerry said, somewhat sheepishly. Then he boasted about his interview on a 60 Minutes episode. Not all of it was bad. They showed concern about the road I’d taken to get there. Apparently GPS had led me astray.

  Both were gray-haired and pleasant, trim and dressed in similar green-print, button-down shirts. Gerry’s face was ruddy and kind. He stood tall. Janice kept her chin tipped high and carried herself in an elegant, if slow, manner to the kitchen for tea. They looked the typical retired couple, comfortable and content. Even healthy. But they weren’t. Like so many others with ME/CFS, they looked too healthy to be sick and were repeatedly disbelieved.

  But regarding Janice, who has been the sicker of the two, I recognized the tension lines in her forehead that I’ve seen in other chronically ill patients. I link it to months and years of intense concentration to control pain. Or maybe she was just concentrating hard to make it through our sudden meeting. I knew from other ME/CFS patients that they only had an allotted amount of energy daily or weekly, and I knew she would crash right after. I felt that familiar guilt tugging at me with every minute I spent in their home.

  Looking at them reminded me again of how important love was for the survival of those with ME/CFS. Loneliness was almost a symptom of the disease. To me, theirs was a love story.

  “We still had each other,” Janice said, staring up at her husband tenderly. Without each other, they said, they wouldn’t have survived.

  After getting sick in the summer of 1985, Gerry somehow managed to struggle through three more years of work. But then the insomnia, brain fog, and body pains got to be too much, and he, too, was forced to resign. Neither of them has been able to work since then.

  Peterson still prescribes both Gerry and Janice weekly infusions of a treatment designed to boost the immune system called IVIG (intravenous immunoglobulin) therapy. It’s an experimental treatment that insurance doesn’t pay for but which they’ve been doing for many years. They believe it improves their daily lives, giving them a bit more energy to find some enjoyment in life. In 1989, Janice participated in a clinical trial for an experimental drug called Ampligen, an antiviral used to treat AIDS in its early days, available only to patients in clinical trials. Both believe that it may have saved Janice’s life. By the time I reached the Kennedys’ home in 2019, there had already been a twenty-year-long attempt by the company that makes the drug, Hemispherx Biopharma, to get approval for Ampligen for the treatment of ME/CFS from the Food and Drug Administration. (The FDA has determined the drug is not harmful but wants results from larger clinical trials.)

  The couple had fought another twenty-year battle, with Dr. Peterson’s help, to get workers’ compensation insurance, which ultimately failed. But still, they’ve been lucky financially. They know others like them who have lost their homes. Before getting sick, they had taken out a disability insurance policy for California teachers. That helped, and they have been getting monthly early retirement checks from the school district as well. So many others have no insurance and no money. I wonder about what happens to the others, not as lucky as they are. Homelessness. Suicide.

  “I don’t think I can express how much we depended on Dr. Peterson,” Janice said. “He kept our spirits up. He never gave up. He was going to find a treatment. I feel so bad for people who don’t have that, his reassurance that he would take care of us.”

  “I know people who are so alone,” Gerry said. “I know others put in mental institutions. I know a woman who killed herself. I remember fixing her car once.”

  Since moving to Weimar, they’ve learned how to get through each day by living within that “energy envelope” that so many ME/CFS patients, including Laura Hillenbrand and Whitney in his writings, describe. It’s the symptom of post-exertional malaise, a hallmark of the illness. You try to guess how much energy your body will allow you to use before it crashes, and you try never to go beyond that line. Or, as Gerry calls it, you “hit the wall.”

  Gerry’s able to garden, at least a bit, growing vegetables and flowers outside. He needs to keep busy for his mental health, and there’s not much else that he can do physically, beyond the necessary daily chores to survive.

  “This is my therapy,” Gerry said, looking out at the garden. Still, sometimes he does too much, goes beyond the envelope and hits that wall. Then he drops his tools where he’s working, leaves them on the ground, and crawls on his hands and knees from the garden through the sliding glass door to the living room carpet, where he collapses inside. Sometimes he stays there, sleeping for hours.

  Before I left, I thanked the couple for their time and hospitality, and they smiled. Then Gerry glanced at his wife and said, “I guess it’s not going to happen in our lifetime, the silver bullet?” I looked over at Janice and raised one eyebrow, asking what he meant.

  “A cure,” Janice said, and waved good-bye.

  During the long drive back to Santa Cruz, I found an immunology 101 course for free on YouTube and plugged my iPhone into the car. I started memorizing the common terms like antibodies and antigens, cytokines and viruses and immunodeficiency diseases. I knew I needed to be better versed in the language.

  A few days later, after I got home, I managed to dig up the telephone number for Gary Holmes, one of those CDC investigators who came to Tahoe, and gave him a call. He was living and working in Texas at a military hospital. He told me he had long ago put the aftermath of that visit to Tahoe behind him. All he would say is that he was just trying to do his job at the time.

  I thought about what Cheney had told me about those two investigators. He referred to them as “Tweedledum and Tweedledee.”

  “They were pawns in a great system,” he said, describing to me how he felt about those two CDC investigators. “Robots reporting for duty. They grabbed a bunch of blood and left town. That summer we didn’t hear anything. Nothing.”

  Chapter 8

  In Search of Lost Time

  OVER THE YEARS SINCE Whitney’s been sick, Janet’s home office, where she once ran her psychology practice, has seemingly transformed into a sanctuary for nostalgia. Just down the hall from the kitchen the small room smells of old books and faded construction paper. Sunlight streams in from the lone window. It’s calm and quiet except for the distant sound of a churning washing machine from somewhere deep in the house. Janet and I have tiptoed into the room, which shares a wall with Whitney’s bedroom, to dig into the past.

  I showed up at their Palo Alto house on my day off to see some of Whitney’s early photography and artwork from college. As I researched Whitney’s disease, more questions than answers began to plague me—just like Ron, but mine went beyond the science. As a journalist, I found intrigue in the story. In my mind I had begun to intertwine the story of Whitney’s happy childhood with the emergence of this mystery disease in the US. I began to imagine this nightmare disease as something evil slithering its way toward this beautiful baby boy, with nobody there to do anything to stop it. Ron didn’t even know it existed back then. He was busy cracking other codes as the nation geared up to launch the Human Genome Project. Perhaps it was just because that’s the way I interpreted my own life: by milestones in my own children’s lives. But today, as Janet tells me more about Whitney’s childhood, my mind keeps jumping back to the scary fairy tale I’ve created of the evil snake that no one ever stopped.

  Janet begins to search through the myriad piles of buried treasure hidden in the corners of the magical room, her face begins to glow, and, for a few hours at least, she escapes into memories of happier times.

  “I’m a sentimental person,” she whispers to me, smiling as she picks up what she
says is a giant black widow spider cut and folded out of construction paper. I remember a video of Whitney carving a pumpkin and holding up the spider, fresh and black with a red spot on its back. A black widow. Next she holds up a simple crayon drawing, which she instantly recognizes as a cheetah made by Whitney when he was just three years old. “This is one of the first things he ever drew,” she says tenderly.

  One art project after another of Whitney’s gets held up for admiration. Janet’s found the pile of Whitney’s kindergarten projects she was searching for, remembering how kindergarten was a particularly productive period in Whitney’s budding art career. Whitney was energetic and happy. And he loved art. He drew panthers and leopards and an underwater scene with a very large octopus at its center. There’s a drawing of, well, it’s hard to say. Maybe a boat? Titled “For Daddy.” And a painting of a dinosaur eating a cactus with a large tongue dripping bucketloads of blood. Yup, something my son would definitely have drawn, I think, chuckling. I think back to how much I loved my own kids’ art projects, and made sure to get assigned to the “art station” when I volunteered for their kindergarten classes.

  “I love it in here,” Janet says with a sigh as she plops into a lounge chair and flips through piles of books next to her on the floor. “I used to sit here and read all the time. Now I just store things in here. Whitney can’t stand it when I’m in here now. He can hear almost any noise from here, and it’s painful for him.”

  Janet has been hesitant to reminisce much with me about Whitney’s childhood. I didn’t understand it at first. I’d ask her about what Whitney was like as a baby or in grade school. She’d let out bits and pieces here and there. He loved his sheepdog Hozho, and he loved baseball. But on this day, we are looking through some of Whitney’s photography from college, and I guess it makes her sentimental. As I watch her go through all the childhood memorabilia, I remember how, when I did the same thing with my own children’s artwork, it was always bittersweet. No matter how much you love them grown and healthy and strong, you grieve for the joy those small children brought you. Then I realize how much harder this must be for Janet. It’s not easy for a mother to relive the happy years spent raising two beautiful children while her grown son lies trapped in his bed just on the other side of the wall. The nostalgia turns into grief far too easily.