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.
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.”