The Body Intervenes

What is it like to both observe and experience the slow encroachment of a disease that will rob you of physical strength and control of your limbs — and probably your brainpower and coherence? A degenerative disease for which there is no cure? A disease in which “progression” means inevitable decline, not a celebration of positive advance?

In This Faulty Machine is an anguished account of what Kathy Page is undergoing as she moves through the slow decline dictated by Parkinson’s disease. The author of eleven works of fiction (the award-winning Dear Evelyn is a favourite of mine), Page was in her early sixties when she began to have problems. She fell and injured her hand and found it increasingly hard to write. Next she was diagnosed with viral myocarditis and disliked what she assumed were side effects of the medication. A tremor began in her right hand. Soon everything to do with movement and coordination deteriorated. For an active, happily married woman with two children who had always taken good health for granted, these symptoms were first worrying, then scary. But there was a long wait for an MRI and then for an appointment with a neurologist.

Friends exasperated Page by asking if she was still able to write. She could barely get herself dressed, let alone do the creative thinking that a novel requires. She hung on to her sense of being a writer by jotting observations in a notebook —“in dreadful, tremulous handwriting.” For a well-organized, productive woman, the frustration was painful.

Page finally received, from a Vancouver specialist, the diagnosis she had deduced from Google searches: she probably had Parkinson’s. The “oddly unexpressive” but caring doctor wrote her a prescription for levodopa — the drug that Oliver Sacks gave to eighty patients suffering from encephalitis lethargica, which he wrote about in his 1973 bestseller, Awakenings. A refined version of the same medication remains the main treatment for Parkinson’s today.

After ten days on the drug, Page sensed “real sweetness,” and she had control of her movements again. She was able to take pleasure in the world outside herself: hikes, the glorious vegetation of hills, a well-tended garden. She knew that this was likely temporary relief, but no matter: “I feel as if I have sneaked back across the border into the kingdom of the well.” But she also felt as though she was her body’s prisoner. For a while, she was a prisoner of the COVID‑19 pandemic as well, with only virtual contacts with fellow people with Parkinson’s, or PWP.

A Memoir of Loss and Transformation, Page’s subtitle, reflects the structure of her book. In the first two-thirds, she deals with loss. In the final chapters, she deals with transformation. “I hope I’ve made it clear,” she writes in her last sentence, “that the disease is not and never will be the star of this show.” Instead, the main actor in this memoir is, of course, Page herself — not exactly a star (she is often grumpy and at times downright irritating) but an individual determined not to cede centre stage to the physical weakness that threatens her sense of selfhood.

Page traces the downs and ups and downs (mostly determined by drugs) of her condition over the five years since her diagnosis. She joined an online support group and listened to the catalogue of experimental treatments and alternative remedies proposed by other PWP: a helmet studded with bulbs that emit red and near-infrared light, terazosin, fava beans, vitamin B1, fecal transplants, probiotics, mannitol, CBD, psilocybin. Most participants, she suspects, just ate more vegetables and took a few more vitamins.

She tried a Zoom exercise class run by Eleanor, a ferociously demanding instructor: “Breathe. Lunge. Count. Twist, reach.” She determined to follow the fierce admonition to “keep moving.” But she kept returning to the question “What will I do with whatever amount of fairly good time I have left?”

Page describes the strained relationships between some PWP and their carers. She had begun to experience strange nightmares and to talk in her sleep. What did it all mean? She goes into some detail about the role dopamine plays in the brain. And she explores a particularly gruesome symptom of Parkinson’s: chronic constipation. I can almost hear her sigh as she covers the perils of this condition and writes, “Let’s not go there.”

For the most part, I found the early chapters of In This Faulty Machine to be a candid, often darkly droll account of Page’s physical struggle with her symptoms, her intellectual effort to understand the physiological impact of her diagnosis, and the emotional stress of facing a brutally curtailed lifespan. I empathized with her exasperation at the endless clichés surrounding talk of disease, particularly the illness-as-journey trope. “Must we constantly be exhorted to apply a positive gloss on everything,” she asks, “even agony and devastating losses?”

There are constant allusions to other authors who have tackled illness in their own work, including Virginia Woolf, Susan Sontag, Joan Didion, Hilary Mantel, Rebecca Solnit, Anatole Broyard, Marcus Aurelius, Dylan Thomas, and Viktor Frankl. Page feels sustained by their words, her solitary experience dignified and acknowledged as part of a complicated human whole. However, her perspective as a creative writing teacher and psychotherapist begins to grate. On occasion, I found the frequent ascensions into the literary stratosphere a deflection from Page’s own experiences. I was grateful when she returned to the quotidian, as when a friend whispered, “Good luck with your journey, Kathy.” Page’s inner voice muttered, “Journey? We’re not on a [expletive] sailing trip!”

Throughout, there is an affectionate recognition of the demands Page has put on her husband, Richard, and his stalwart partnership as together they make the decision to move from the much-loved house they built on British Columbia’s Salt Spring Island to a smaller home closer to medical care. Slowly the mood of the book shifts, as she strives to live in the present. The grumpiness dissipates. The anecdotes that she weaves into her polished explorations of her physical state become less about herself. “Not being so strong allows you to see and feel and even do new things,” she suggests. “Once you accept an unwelcome situation, it may surprise you.”

But one question still bugs Page. She talks it out with a new walking companion, Carole James, a former deputy premier and now a PWP with a clearly articulated purpose: to destigmatize the disease and the needs of those with it. “Can you imagine your life,” Page asks James, “without some version of that feeling of purpose?” For Page, who was in the middle of writing her ninth novel when her physical health failed, it has been a struggle to learn to just be with people and ignore the need to be productive.

This is the “transformation” element of the memoir. Page has learned that, in a scaled-down reality, she finds a sort of liberation in “accepting I am fighting a losing battle, yet doing so with some kind of grace and style.” On a rare visit to her neurologist, she mentions that she has nearly finished this book and might have some science questions for him. She wonders if she “could be imagining the all-too-understandable flicker of panic” on his face.

There are still difficult choices ahead: a move to a care home, the possibility of medical assistance in dying. She does not explore these options. Instead, she writes of strengthened relationships and her discovery that, despite what Sontag once asserted, there is no border between the kingdom of the sick and the land of the healthy. She hopes that In This Faulty Machine will be some consolation for readers, an inspiration to forge connections and diminish ignorance.

Especially during the early chapters, I kept asking myself for whom Page was writing. This is not a personalized version of the classic New Parkinson’s Disease Treatment Book, nor is it a typical my-life-as-a-victim memoir. My mind occasionally wandered during lengthy reported conversations or lush passages about trees. But when Page starts digging deeper into her changing outlook on life, my attention picked up. Here In This Faulty Machine is about the perceptions of mortality. It is not only for her fellow PWP; it is for anyone who finds themselves recalibrating their priorities as their faculties begin to fail.

I think back to my childhood in an extended family with many elderly grandparents, great-aunts, and great-uncles. In retrospect, I realize several were suffering from degenerative diseases such as Parkinson’s or Alzheimer’s, though few had received a formal diagnosis. They were included in every family celebration, cherished by siblings and respected by descendants. Nobody expected them to be productive, and their children were expected to look after them. As grandchildren, we just thought they were old. They were still part of our world; there was no rigid divide between the firm and the infirm. There was no self-imposed pressure to “rage against the dying of the light,” as there undoubtedly is today for high achievers like Kathy Page. Our life expectancy has lengthened and geriatric medicine has given us far better drugs. I’m certainly not yearning for “the good old days,” but I cannot help wondering if, for some at least, it was easier back then.