Writer Jennifer Lunden lies in her bed at her home in Portland in January, Lunden spends almost her entire day in bed or on the couch after a relapse of chronic fatigue syndrome, a disease that first appeared when Lunden was in her early 20s. She is writing a book, “American Breakdown: Notes from an Industrialized Body,” which is almost finished. Because of her recent relapse, Lunden has not been able to write. She reads a bit when she can and usually only leaves the house if she has an appointment. Brianna Soukup/Staff Photographer
Against her will and despite her best efforts, Portland writer Jennifer Lunden has become pretty good at self-isolation and social distancing these last few months, long before most of us had to.
Lunden, winner of the 2019 Literary Arts Fellowship awarded by the Maine Arts Commission, was deep into writing a book about the health-related costs of capitalism, “American Breakdown: Notes from an Industrialized Body,” when she slipped into an acute relapse of myalgic encephalomyelitis/chronic fatigue syndrome, the illness that made her want to write the book in the first place.
The condition results in extreme fatigue, leaving many people unable to get out of bed or complete simple tasks like taking a shower. The illness was a big part of Lunden’s life when she was younger, back in her 20s. She was flattened by fatigue in 1989, and felt dismissed by her doctor when he told her she was depressed. That set on her on a quest to better understand chronic fatigue and take more control over the physical condition of her life.
She managed well for decades, to the point that chronic fatigue was hardly a factor in her daily life. In 2018, she signed a contract to write a book about her experiences with the American health care system, from her perspective as a dual citizen of the United States and Canada. She was born in the United States, grew up in Canada, and moved to Maine at age 21. Soon after leaving a country with universal health care and moving to one without some form of health care for all, she fell ill with mononucleosis.
That led to the onset of myalgic encephalomyelitis/chronic fatigue syndrome and a 30-year journey into the dark heart of American health care. As she describes it, “American Breakdown” will blend memoir, history, science and social criticism “to explore the health hazards of unfettered industrial capitalism,” told through her experience with chronic fatigue and various chemical sensitivities associated with it.
All was fine until last fall, when she relapsed while she was nearing completion of her first draft. Her condition became so bad she was unable to hold her hands to the keyboard for any length of time. Her writing ground to a halt over the winter. She asked for and was granted an extension by her publisher, and then launched a GoFundMe campaign to help her pay mounting medical bills.
She is feeling better lately, and hopes to return to a full writing schedule in the spring.
As she witnessed the grounding of American society in recent days because of the spread the coronavirus, she felt tremendous empathy for everyone, and couldn’t help but feel some bitter irony. Just as Lunden was feeling like she “had joined life again,” the coronavirus shut down the outside world she was ready to rejoin. Just as she was ready to reengage, if only on a limited basis, she couldn’t.
“This is the best I have felt in a long time,” she said, laughing at the absurdity of it all.
Lunden, 52, understands what it’s like living with uncertainty and fear and the necessity of taking extreme precautions to stay healthy. She knows what it’s like to spend days at home, in isolation. Because of fatigue, she only leaves her Portland home for doctor’s appointments. When the COVID-19 cases began emerging in Portland, she arranged to rent a portable hyperbolic oxygen chamber. She used to go to her chiropractor’s office for treatments, four times a week. Now she is doing them in a portable unit at home.
“It’s scary,” she said. “I’m probably more vulnerable to it than fully healthy people, but it’s scary for all of us. It could hit it any of us and affect any of us. It’s a terrifying feeling.”
The coronavirus notwithstanding, Lunden has been feeling better and is optimistic she will get back to a productive writing routine. She will start with an hour of writing a day, with a goal of getting back to six or seven hours a day. That is what she was doing before the relapse in the fall. “If I can start with an hour a day, that will be enough to make me feel like a writer again,” she said.
In “American Breakdown,” she is writing about the health effects of industrial capitalism on individuals and society. They’re all bad, she said. Americans live with a lot of stress and not a lot of happiness, relative to other industrialized countries. She explores the effects of stress on personal health and the role of capitalism in our stressful lives. “It’s self-evident,” she said. “We are struggling to make a living, and the system isn’t set up in our best interests. It’s set up in the best interests of the corporations.”
As she works her way back to being a productive writer, Lunden is weighing how to handle her relapse in the book. As a writer of nonfiction, her personal story will inform her book. That’s the silver lining of her first-person experience. Her original plan was to finish the book with an optimistic closing chapter about her recovery from her original bout with chronic fatigue and her ability to manage it. “But the relapse is a complicating factor. I might have to write an epilogue or a separate essay to come out when the book is released,” she said.
Her new deadline is February 2021.
One of her physicians, Dr. Sean McCloy of Integrative Health Center of Maine, described chronic fatigue syndrome as “a wastebasket diagnosis. It’s a collection of symptoms, rather than an actual diagnosis,” he said.
For Lunden, it’s been debilitating, he said. “I feel so bad for her. It’s the height of irony that she finally got well enough to write a book about her experience and her condition, and now she has a massive relapse of symptoms so severe that she can’t carry it on anymore,” he said. “It’s sad and ironic.”
McCloy has been working with Lunden since 2006, after she had seen a parade of other doctors who were unable to connect the dots of her condition. He called Lunden “a medical mystery” and an example of someone who was written off by the medical establishment as suffering from depression or anxiety when other explanations demanded exploration.
“It’s a bio-chemical problem,” he said. “Intellectually speaking, these are the most challenging cases for me and my medical practice, because it’s detective work. We have to put all the pieces together to get a complete picture.”
Lunden has a history of toxins in her body, he said. A genetic mutation prevents her body from detoxifying common toxins that we’re all exposed to, things like cigarette smoke, perfumes and scented products. “Because of her issues, her body can’t get rid of that junk,” he said.
As a result of the toxin buildup, Lunden’s mitochondria, the organelles that generate cellular energy, can’t produce enough energy to power her body. At the same time, her brain isn’t producing the serotonin and dopamine required to live “a happy, normal life. So she has literally run out of energy,” McCloy said. “It’s not her fault. She is trying to live a healthy life and is doing all the right things. It’s just that her body won’t let her get better sometimes. Her tank has run empty, in a literal sense.”
Frank Turek, her husband, wondered if his wife would regain the strength to get back to her book. When they met in 2002, Lunden was recovering from her first bout with chronic fatigue syndrome. As a couple, they avoided places with toxic odors out of sensitivity to her condition, but otherwise they lived an active life.
Her setback this fall felt numbing, Turek said. The doctors were flummoxed. He was flummoxed. She had good weeks followed by bad weeks, hope followed by despair. There was an air of general sadness, Turek said.
Lunden couldn’t function and Turek couldn’t do much beyond taking her to her appointments and practical things like shopping for groceries and cooking. Throughout, his admiration of her has grown.
And now with spring, there is hope, he said. “She’s got a strong work ethic, and she is committed to this book. It’s been frustrating, but she’s moving forward.”
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