Porochista Khakpour spoke on the first panel I attended at the 2018 Association of Writers and Writing Program’s Annual Conference. The panel titled, “The Body’s Story: On Writing Narratives of Illness,” also included Sandra Beasley (moderator), Sonya Huber, Suleika Jaouad, and Esmé Weijun Wang. This was my first AWP after a Lyme disease diagnosis, traveling now with multiple medications and peripheral neuropathy. But I was eager to learn from Khakpour and her fellow panelists. So, I showed up at 8:50 a.m. and chose a seat that would allow me to stretch my arthritic knee.

To a packed room, Khakpour described traveling with physical challenges, impetus for her memoir Sick, chronicling her life with late-stage Lyme disease.

“I couldn’t find myself in the narrative,” Khakpour said. The myths of Lyme disease are many, the most insidious being that Lyme patients are white, East Coast, outdoorsy, wealthy, and also (of course) making it all up. Sick shatters these myths, revealing Khakpour’s experience with this disease.

Hers is not the story of the victory march and resists militarized metaphors of conquest, battle, and colonization. Hers is the story of the slog, of being ill and on the margins and at the mercy of a broken American medical system. It’s the story of being displaced, disbelieved, and laughed at by hospital personnel. It’s the story of what it means to live, to be in love, to build a writing career, to be an artist, to come of age, to take pleasure, while also living with escalating and debilitating medical symptoms. The end of Sick is not a celebration, but a taking stock of human vulnerability.

“This book is, it turns out, a miracle book, because it wrote its own ending, insisted on its own ending,” Khakpour writes in her epilogue. “It didn’t believe in my bows, my full circles, my pretty arcs, my character development.”

Her epilogue draws distinctions between the book she “sold” and the book she “wrote.” The book she sold was “a story of triumph, of how a woman dove into the depths of addiction and illness and got herself well.” The book Khakpour wrote ends on the poignant realization that “illness will always be with you as long as life is with you. And tragedy will be with you too.”

Because her body is the setting of her disease, setting becomes the controlling device of her story. The narrative follows Khakpour’s travels from California to New York City to New Mexico to Germany. She’s global and bicoastal, as difficult to place as the origin of the spirochetes in her blood.

“If you face yourself properly, you also have to at some point face where you take up space,” Khakpour writes. She not only faces multiple and sometimes contradictory spaces, but begins to accept that something mysterious is taking up space inside of her.

She suspects she contracted Lyme disease as a child hiking in California with her parents, who emigrated from Iran when Khakpour was a toddler. But the precise origin of her infection eludes her. Like many Lyme patients (myself included), Khakpour has no memory of the tick(s) who bit her, nor did she see a bull’s eye rash, which does not manifest in all patients infected with Lyme.

But after her diagnosis, Khakpour actively tells doctors and others that her disease is “CDC level Lyme,” meaning at least five specific antibodies appear on her blood tests. I have done the same, and understand intimately how Khakpour must learn to speak the master’s language in medical settings: “to let them know I was real.” Death is the price of not being believed. And this is not hyperbole.

During her AWP panel, Khakpour shared an anecdote, included in Sick, about young women dying of Lyme disease because doctors do not believe they are ill. Her book’s title is as much a descriptive of her personal story as it is a political statement. Women “suffer the most from Lyme” and “tend to advance into chronic and late-stage forms of the illness most because it’s checked for last, as doctors often treat them as psychiatric cases first,” she notes.

Indeed, it’s not difficult to conflate doctors’ treatment of modern day female Lyme patients with the historical treatment of nineteenth century so-called “hysterics.” Khakpour, myself, and many women have been made to believe that we are stressed or mentally ill, and certainly not physically sick, experiencing first symptoms. How can we be seriously ill when we are youthful, stylish, or even thin? As Khakpour notes, “the experience of going for years undiagnosed and then misdiagnosed as many like myself do can cause considerable trauma.”

She adds, “In the end, every Lyme patient has some psychiatric diagnosis, too, if anything because of the hell it takes getting to a diagnosis.”

In Sick, redemption comes, but not in a miraculous recovery or a body made “well,” whatever that means. Khakpour’s refusal to quit, her persistence, is what saves her. By telling her complicated and unvarnished story without a hero’s journey, Khakpour gives voice to the experiences of countless others who lack her platform or who have not survived to tell the tale.

Magin LaSov Gregg lives, writes, and teaches in Frederick, Md. Her writing has appeared in The Washington Post, The Dallas Morning News, The Rumpus, Bellingham Review, Under the Gum Tree, Solstice Literary Magazine, Hippocampus Magazine, and elsewhere. Her first essay about living with Lyme Disease (“To Punctuate” Full Grown People) was nominated for a Pushcart Prize in 2018. She’s working on a memoir about how she lost and found her Jewish faith after moving to the Bible Belt and marrying a Baptist minister.