What hope is there for healing when the medical establishment views not your symptoms, but you yourself as the problem? Christy Zink reviews Sick: A Memoir (2018), Porochista Khakpour’s uncompromising account of her struggle with Lyme Disease.

It started with a bite, a pinch, maybe a scuff unnoticed among childhood’s daily scrapes. Left unattended for years, sickness seeped into the body, taking hold not just in and through the skin, but also in the muscles, the brain, the blood. These twin temporalities – a past moment of chance infection and the future havocs that Lyme Disease will wreak – frame Porochista Khakpour’s uncompromising memoir Sick.

“Illness taught me that something was wrong,” Khakpour writes, “more wrong than being born or living in the wrong place. My body never felt at ease: it was perhaps battling something before I knew it was. It was trying to get me out of something I could not imagine” (6). Khakpour draws attention to the long battles faced by patients with Lyme Disease, not just for medical treatment, but also for a doctor who will believe them enough to arrive at that diagnosis.

Lyme Disease is now recognised by the Centers for Disease Control with official case-definition language. This illness, transmitted through the bite of a black-legged tick infected with Borrelia burgdorferi, strikes an estimated 300,000 people per year in the United States (Centers for Disease Control 2019). But this is not purely an American condition. Public Health England reported 1579 confirmed cases of Lyme Disease in 2017, continuing a previous upward trend; 1000 to 2000 more instances per year are suspected (2018). Additional research confirms cases in Scandinavia, Central Europe, and Asia (Ross Russell et al. 2018).

The recorded data obscure the unknowns. Even researchers dedicated to the study of B. burgdorferi recognize the slipperiness of testing and results. Khakpour argues that the fight to access health care is exacerbated by the fact that more women than men press for treatment. Science writer Abby Norman, who has detailed her own fight for recognizing women’s pain, succinctly explains: “throughout history, a woman in pain was presumed to be lying” (2018: 27). What hope is there for healing when the medical establishment views not your symptoms, but you yourself as the problem? And when you are – like Khakpour – not only a woman, but also a woman of colour and an immigrant, exhibiting symptoms of a disease that many providers still deny as legitimate, the body is asked to bear far more than physical damage.

Khakpour succeeds in exploring how illness is compounded by a host of psychological pressures, including politics, racism, and America’s broken healthcare system. In Sick, she mixes up the cocktail of disbelief and misdiagnosis that leads so many patients with chronic illnesses to seek relief through whatever means available. Her book becomes equally a memoir of Lyme Disease and of addiction, inflamed by life in the Trump era. “All my life,” she writes, “I’ve heard my parents and relatives say America is a sick country, in every meaning of the sentence possible” (83). The financial numbers she provides—a total of $140,000 in medical bills—speak to devastating costs in a country that treats health insurance as high-priced commodity and does not value health care as human right.

As a published novelist, Khakpour extends the framing of Arthur Frank for a patient to “be a good story,” through a narrator who survives on the edge. Her memoir has all the elements of thrilling narrative, from cross-country trips, to car crashes, to flings with more men than she can count on her hands, to a lover’s violent psychotic break. The book is ordered by those fraught relationships and by geography, with chapters titled by locales where she’s confronted disability—New York City, Santa Fe, Leipzig, Los Angeles, among others. Her structure is an inventive one to impose on what is by necessity a nonlinear narrative. Trauma, we know, refuses the coherent tale, and so the formal organization of Khakpour’s text is shaped to resemble the jumbled storyline of her lived experience. In the epilogue, Khakpour explains that rather than producing a typical narrative of triumph-over-adversity, Sick refuses to abide the rules of literary memoir.

A litany of dramatic events, however, doesn’t equal continued readability or a deepening of meaning. Among these pages we encounter a rush of practitioners, from rheumatologists to gastroenterologists to psychics and any number of flings into alternative medicine, including bee-sting therapy, ozone shots, photoluminescence therapy, and at one point, over 100 pills a day. There’s more than a touch of Fear and Loathing in Las Vegas in her catalogue of misadventures. Intervening, brief chapters such as “On the Wrong Body” and “On Love Lost and Found” take us past lists of mishaps to explore the entanglement of the physical and psychic, providing a glimpse of the richer book hinted at here, had this writer allowed her barbed and wise intellect more space to trouble the critical questions about sickness that are raised by her story.

Khakpour, by her own admission, is not an easy person. She abuses her body, relishing “the thrill of the sick person making herself sicker.” “I am a sick girl,” she proclaims. “I know sickness. I live with it, in some ways I keep myself sick” (229). She does not flinch from recognizing herself as a “bad patient,” tracking her drug addictions and faltering mental health as indistinguishable from the toll of Lyme Disease. Leslie Jamison, in an essay about Morgellons disease, another contested illness, powerfully questions the extent of compassion: “Is it wrong to call it empathy when you trust the fact of suffering but not the source?” (2013: 67). What, we might add, if we trust both the suffering and the source but find our compassion strained to the breaking point? Chronic illness, these pages teach, is exhausting not only to the person suffering but to those around them in its relentlessness.

In the end, Sick contributes meaningfully, if unevenly, to the medical humanities and to the growing body of creative narratives that stand in necessary challenge to clinical authority. Khakpour’s memoir underscores how complex diagnoses are further confounded by human fallibility – by doctor, by patient, and by the very times in which our bodies dwell.

References:

Centers for Disease Control and Prevention. 2017. Lyme disease (Borrelia burgdorferi) 2017 case definition. https://wwwn.cdc.gov/nndss/conditions/lyme-disease/case-definition/2017/

Centers for Disease Control and Prevention. 2019. Lyme disease: Data and surveillance. https://www.cdc.gov/lyme/datasurveillance/index.html?CDC_AA_refVal=https%3A%2F%2Fwww.cdc.gov%2Flyme%2Fstats%2Findex.html

Frank, Arthur W. 2014. Being a good story: the humanities as therapeutic practice. Therese Jones, Delease Wear, and Lester Friedman (eds.), Health Humanities Reader. New Brunswick, NJ: Rutgers University Press, pp. 13-25.

Jamison, Leslie. 2013. The devil’s bait. Harper’s Magazine, 327: 64-70. https://harpers.org/archive/2013/09/the-devils-bait/

Khakpour, Porochista. 2018. Sick: A memoir. New York: HarperPerennial.

Norman, Abby, 2018. Ask me about my uterus: A quest to make doctors believe in women’s pain. New York: Bold Type Books.

Public Health England. 2018. Lyme disease epidemiology and surveillance. https://www.gov.uk/government/publications/lyme-borreliosis-epidemiology/lyme-borreliosis-epidemiology-and-surveillance.

Ross Russell, Amy L., Matthew S. Dryden, Ashwin A. Pinto, and Joanna K. Lovett. 2018.

Lyme disease: diagnosis and management. Practical Neurology, 18: 455-464. https://www.ncbi.nlm.nih.gov/pubmed/30282764

*****

Christy J. Zink is an assistant professor of writing in the University Writing Program at The George Washington University, where she teaches seminars in the medical humanities. She is currently at work on a memoir-in-essays that focuses on the intersections of pregnancy, abortion, loss, and mothering.

Porochista Khakpour, Sick: A Memoir was published by Canongate in 2018. 

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