Former Sonoma State bodybuilder’s struggle with mystery disease

In June of 2009 a dazed 21-year-old Sonoma State student stood on the Napa River Bridge along Highway 37, gaping at a car in flames in front of him and fruitlessly trying to process what had just happened.

A man was burning up in that car, which was inexplicably at a dead stop in the middle of a road once known as “The Killer Highway.” It was Jamison Hill’s fate to be driving the next car to come along and to be the one to plow into it. Although it wasn’t his fault he is still, more than a decade later, haunted by the horror of having killed a man.

That terrible experience would not be the worst thing to happen to the young man during his college years. But it may, or may not, have contributed to what came next.

A hard-driving competitive bodybuilder, fitness trainer and male model who compulsively worked out three hours a day to sculpt his body into a living David, Hill was stricken by a mysterious illness midway through his senior year. He felt the first wave of sickness while working out at the SSU fitness center. At its worst, it would rob him of virtually all his faculties save his mind and render him bedridden, at times unable to eat solid food, talk, stand, groom, tolerate light or even to be moved without excruciating pain.

He shares his journey through the darkness of myalgic encephalomyelitis, commonly called chronic fatigue syndrome (ME/CFS), a debilitating but poorly understood disease believed to be triggered in some case by mononucleosis, in a new memoir, “When Force Meets Fate: A Mission to Solve an Invisible Illness.” Like a mystery novel, it’s a gripping page-turner you race through in hopes of a cure, answers and a happy ending. The truth is more complicated.

Small world

Hill lives with his mother Kathleen O’Halloran in a home on a mountain road between Twain Harte and Tuolumne in the Sierra foothills. His world is small: a bedroom with reminders, like an upside-down guitar he is unable to play hanging on the wall, of a life he has fought fiercely, but so far failed, to reclaim. There are photos — a vineyard scene recalling his old life in Sonoma County sent by a former teacher, a picture of his SSU roommate walking down an alley, old 35-mm shots he took of surfing and a lighthouse from a brief time when he was living in Santa Cruz and sick but still strong enough to engage in life.

Curtains are frequently drawn over the French doors during the day to protect his light-sensitive eyes. A good day for Hill is overcast. But on a recent short visit at night via Zoom, he shares his nighttime view of trees, the driveway and the twinkling lights of the Central Valley far below.

Hill, 32, has inhabited a sort of bed-bound netherworld for the better part of a decade. Along the way, he found purpose, and a voice, in writing. A business major at Sonoma State, he began freelance writing and editing during the windows of his illness when the symptoms subsided enough to allow him to tap out his thoughts and memories on his cellphone. The bright lights from larger computer screens are too painful on his eyes. He sometimes donned tanning goggles to write on his phone. The book, compiled from his blog posts (Jamisonwrites.com), journals, memory and interviews, was a nine-year project.

“Writing on the phone wasn’t even the hardest part,” he said in an email interview, his throat and jaw in too much pain to speak after the effort of a whispered introduction over FaceTime the night before. “Editing it was the most challenging — trying to dissect grammar and sentence structure on a tiny screen with big thumbs is a test of patience for sure.”

Also on the wall of his room is one of the most notable accomplishments of his post-bodybuilder life. It is a framed article from the New York Times Hill wrote three years ago for the newspaper’s popular “Modern Love” series.

“Love Means Never Having to Say … Anything” is a heart-stopping confessional about the deep, often “inaudible relationship” he has with Shannon Donegan, a young Canadian woman who struggles with the same debilitating illness. The 2018 piece about love and connection in the silence when it is too difficult to speak was a talker and was turned into a podcast read by actor Pedro Pascal from “The Mandalorian,” “Game of Thrones” and “Wonder Woman 1984.”

“Shannon has never heard my voice. She has never heard me berate a telemarketer or mumble to myself after making a typo,” he wrote in the New York Times’ piece. “She has never heard me mess up a dinner toast or tell a corny joke. She has never heard me whisper into her ear or come up with a witty reply. She has never heard me ask a question or speak my mind, to anyone. And she may never get to hear me do any of these things, but that’s OK. Here is this lovely woman, devoid of judgment, who loves me for the words I type to her on my phone.”

“Love Means,” a takeoff on the line “Love means never having to say you’re sorry” from the 1970s film “Love Story,” resonated with readers. It inspired Hill to expand it into his full-length memoir, recounting his unraveling from a perfect specimen of youth who could lift heavy weights to an invalid.

“I think it was the first article I’ve written where I didn’t at least get a few jerks sending me mean messages,” he said. “Some luminaries like Emmy Rossum and author Kate Bowler shared it on social media. It was all pretty cool.”

Raising awareness

On a personal level, Hill said his book is “a story about coping with trauma, finding strength in vulnerability and learning to surrender to the unpredictability of fate.” But he also hopes it will help raise awareness and sensitivity about hidden chronic disease, particularly ME/CFS, which is frequently misunderstood and dismissed even by doctors, according to the Centers for Disease Control and Prevention.

Up to 2.5 million Americans are afflicted with ME/CFS, but only 10% are diagnosed. The rest are left to suffer with no help or treatment, their profound weakness and inability to do even everyday tasks often brushed off as psychosomatic. There is no lab test to diagnose it. The CDC acknowledges that few medical schools include training in the viral illness and that more education is “urgently needed” to provide timely diagnoses and appropriate care.

“Much of the research right now is funded by private donations,” Hill said. “If we just had more support from the government, we could solve a lot of these mysterious health issues because it’s likely that many of them are related. So many of the symptoms are similar, and what research has been done suggests that different chronic illnesses can be interconnected.”

Suddenly stricken

Hill, who grew up in nearby Martinez, skated through college. Pumped on caffeine and protein shakes, he threw most of his efforts into bodybuilding and fitness. His three-hour weightlifting routine ended with 10 pushups with two 45-pound weights on his back, all at the end of a day in which he went to class and taught two high-intensity fitness boot camps. His dream was to become a famous fitness personality and appear on “every muscle magazine cover.”

That changed in November 2010. During a workout at the Sonoma State Recreation Center Hill was overcome with stabbing pain, weakness and chills. The symptoms, including fever, nausea, convulsions and a tongue rash, went on for weeks, then months. His doctor thought it was anxiety and depression related to the car accident a year earlier. He knew it was more than that.

Hill eventually was diagnosed with mononucleosis. Caused by the Epstein-Barr virus, mono is common among young adults, and in most cases it eventually goes dormant. But it is believed that for some people, it can turn into the debilitating ME/CFS, a multi-systemic chronic illness and neurological disorder. Explained in simple terms, the virus attacks the body’s mitochondria, leeching the cellular energy they produce and leading to extreme fatigue and a host of other symptoms.

In “When Force Meets Fate” Hill recounts, year by year, his efforts to cope with his illness, first struggling to finish his last few classes online at SSU, then feeling frustration and despair while searching for a doctor who understood what was happening. In his worst moments, he refused to go to the emergency room, knowing they couldn’t or wouldn’t help him.

He had brief period of semi-normalcy when he was able to live in a cottage in Santa Cruz, had a girlfriend and was interviewed for a documentary, “Forgotten Plague,” about ME/CFS. But by 2015 he had declined and become completely bedridden, unable even to sit up at a 45-degree angle without becoming nauseous. He was, as he put it, “a step above a corpse,” unable to read or even watch TV.

“I couldn’t speak at all. I couldn’t even whisper. It was all nonverbal. I couldn’t use my phone. Sometimes I would transpose letters on people’s hands. I used an alphabet system sort of like what people with ALS use,” he said.

His fortunes turned in 2016 when he connected with Dr. David Kaufman of the Center of Complex Diseases in Mountain View. Kaufman helped sort through his complex body chemistry, and with a regimen of supplements and medications, helped him regain some abilities and eat solid food again. He also discovered that somewhere along the way Hill contracted Lyme disease, which also had gone untreated.

In the early years, Hill kept his illness a secret or downplayed it, leading to a lot of misunderstanding.

“For one thing it was futile sometimes to explain it to people. You just know they're not going to get it,” he said over FaceTime. There’s also a stigma around ME/CFS, as if it’s not a serious illness.

“And also coming from my background as a fitness trainer and bodybuilder, I just couldn’t wrap my head around being sick. It’s taken some time.”

Soul mate

A major shift happened for Hill when he met Donegan online in 2017, the two connecting over 2,000 miles through their shared struggle and supporting each other “with an empathy only two people with the same condition could feel.”

Donegan, 30, developed symptoms when she was 13.

“He is definitely one of the most determined/driven people I know,” she said by email. “His book is a great example of that. There were many obstacles along the way to getting it published and I’m sure many, the majority even, of people would have given up. But that wasn’t ever an option for him. I’m sure it was that same drive and determination that got him through the really severe periods of illness he’s dealt with.”

Donegan at one time was strong enough to travel to California and spend time with Hill. At times they could only talk through text messages while cuddling together in bed. Her health drastically declined when she got home to Canada, so they now stay close with FaceTime and text or by playing “Animal Crossing” on their phones.

Dreams

Hill holds on to his dreams that he can claim a life beyond his room.

During his darkest times in what he calls “the cave,” he kept his mind alive, writing stories, visiting far-off places and remodeling his dream house.

“It may have just been a quixotic fantasy, but I imagined myself recovering from the illness and flying to Canada to surprise Shannon,” he writes in his book. “I had pictured a smile on her face when she opened the door and saw me walking and talking and doing everything a healthy person does. I had hoped to give her the biggest hug, maybe even use my renewed strength to pick her up and give her a million kisses all over her beautiful face as tears of joy ran down her cheeks. But that hasn’t happened. Not yet, anyway.”

For now, he is still so weak that he bathes in an inflatable tub on his bed because getting to the bathroom is too taxing.

“I’ve been standing several times a day, putting all of my body weight on my legs, which is progress for me,” he said. “Hopefully I’ll be able to start walking soon, but I’m going slow so I don’t have a fall.”

He is now able to watch movies on his phone, explore the world on Google Earth and occasionally play handheld video games. Reading at length is a strain, so he listens to audiobooks and podcasts. Hill still suffers pain, nausea and weakness, but they are not as bad as they used to be. He is able to go outside in a wheelchair or gurney for fresh air and once the pandemic is over, he would like to venture out into public places again.

He has taken comfort in memoirs from writers who overcame great hurdles, like Dave Eggers’ “A Heartbreaking Work of Staggering Genuis,” Tara Westover’s ”Educated“ and Cheryl Strayed’s “Wild.”

Publishing his story has given Hill renewed purpose and a mission. The book was turned down by more than 50 publishers and 100 literary agents before it was pulled from the slush pile by Inkshares, an Oakland publisher that lets readers decide which books it will publish. Once a proposal gets 750 preorders, they will publish it.

Although freelance writing gigs have been scarce during COVID-19, Hill has published pieces in the Los Angeles Times, The Washington Post, Men’s Journal, Vox, Vice, Bustle and other online sites.

After years of flashbacks and ruminations about that fatal accident that seemed to mark a turning point in his high-flying young life, Hill has made a certain peace with it. He hasn’t completely ruled out the possibility that an undiagnosed trauma helped trigger his illness. But he doesn’t dwell on it.

He’s hoping his book leads to a heightened sensitivity toward hidden illnesses, with more compassion from the medical establishment.

“We need more in-home care from doctors, better coverage in medical schools and when someone with a chronic illness show up at the ER, they shouldn’t be treated like a hypochondriac,” he said.

One certainty in a decade of unknowns is that he is a much different person than the young guy singularly focused on a body that would quickly betray him. A fundamental optimism has helped him be resilient.

“It has definitely made me wiser and more self-aware, less naive about how the world works and how difficult life can be. Before, I thought life would be a challenge, but nothing like this. And yet I know that many people still have it worse than me. Despite my disabilities, I have certain privileges in the world that some people do not.”

You can reach Staff Writer Meg McConahey at 707-521-5204 or meg.mcconahey@pressdemocrat.com. OnTwitter @megmcconahey.