The System Is Broken: On Porochista Khakpour’s ‘Sick’

Khakpour’s memoir spans decades of her most personal, intimate experiences with illness, racism, pain, and resilience.

Porochista Khakpour
Memoir | 272 Pages | 5.31” x 8” | Reviewed: Paperback ARC
9780062428738 | First Edition | $15.99
Harper Perennial | New York City | BUY HERE

Photo: Harper Perennial.

The state of the world looks a little different through the eyes of the sick. Porochista Khakpour would know — she’s been sick most her life, and never really knew it. Rather, she knew she was sick, but the root cause remained unidentified for almost 10 years, during which time she blamed her ever-weakening state of mind and body on the drugs she was using and abusing, the alcohol, her poor romantic choices. Who knew she should, all this time, be blaming her endless hospital visits on one of the most obtrusive unobtrusive creatures there could be: a tick.

In 2015, Khakpour was diagnosed with late-stage Lyme disease. This diagnosis was both a relief and a sentencing. There is no cure for Lyme. Most cases go undiagnosed. What irony that Khakpour would wield in her defense the argument that out of so many cases of suspected Lyme disease, hers was one of the few that was actually found and diagnosable. And yet, finally, with the diagnosis came the admission. The truth. A debilitating one, at that. “i’m getting more and more ill very fast,” she said in a heartbreaking email of scattered words on the screen, lowercased i’s, and misspelled words. “i’m scared [. …] i’m not totally sure what i’m asking [. …] i didn’t want you to feel the burden.”

Thus opens Khakpour’s memoir, Sick. Born in Tehran, Iran, in 1978, “infant of the Islamic Revolution and toddler of the Iran-Iraq War,” Khakpour is an Iranian-American writer and professor now living in Harlem. Her new memoir is a recounting of magnificent proportions: 272 pages describing, sometimes in grotesque and garish detail, three decades of her most personal, intimate experiences with disease, racism, pain, and resilience. This is a story of the sheer struggle of just living that Khakpour faces as an outsider, as someone with brown skin, as a woman, as an author who sometimes can’t even read, and as someone who is Sick, capital “S.”

The book begins first with an author’s note on Lyme, on the science and fundamentals of this complicated disease, and then the story opens with Khakpour, as I imagined, staring the reader in the face and proclaiming quite simply: “I have never been comfortable in my own body.” This statement is at once very basic and so very complicated. This singular statement defines this book and Khakpour and the entire message of her story — from her

“first few years on this earth, early PTSD upon PTSD, marked by revolution and then war and then refugee years, a person without a home […] a brown woman of Middle Eastern ethnic makeup, here in the U.S.”

and then to

“illness, or some failure of the physical body due to something outside of me, that I did not create […] my body never felt at ease; it was perhaps battling something before I knew it was. It was trying to get out of something I could not imagine [. …] I have started to consider that I will never be at home, perhaps not even in death.”

Sick is a very brave work, and a refreshing take on memoir. This book does not, as so many other memoirs do, take careful, gentle jumps from scene to scene, memory to memory, overlaying onto a life a sweeping, obvious lesson. Sick does not act as a platform for self-examination of her best, brightest moments and low (often curated) points. She is not presenting to an audience a portrayal of herself, somewhat fictionalized, in which she arrives at a great discovery while lying on the bathroom floor in a puddle of her own vomit and then and there decides to pick herself up, clean herself off, and get her life in order. Sick is not a story of Khakpour’s life-saving self-revelations, but rather the story of how someone else’s revelation saved her by giving her, in a life of addiction, listlessness, identity struggles, existential and financial crisis and depression and plans for just how she would end her life, the one thing she needed most of all: a diagnosis. An answer to the questions raging through her, riding on the coattails of “serious anxiety, panic, depression, chronic fatigue, gastritis, carpal tunnel, God knows what else.” It wasn’t just her, all along. It wasn’t all in her head. Her experiences were not made up. Her life might be stranger than fiction, but her experiences are not fictional. Her words are straightforward, matter-of-fact in the way she addresses the world. From the disease to the way she is looked at on the subway, the eyes watching her for signs of hostility or attack, Khakpour puts the reader there with her. You feel what she feels. She has spent her life under attentive glares, from the backseats of taxis when she becomes too weak to drive or blinking down at her as she shakes and convulses on the floor, unaware how she got there. You feel the weight of those stares on your own neck, too, and while you might not physically feel her pinpricked pain, you feel her feel the hopelessness that was her life, her entire life.

Khakpour describes it:

“I have been sick my whole life. I don’t remember a time when I wasn’t in some sort of physical pain or mental pain, but usually both [. … M]y first memories are of pure anxiety.”

How could she say it any other way? The blows fall heavy across the shoulders of our author as disaster after disaster chases her from one country to another, then from one side of the country to the other. Fleeing a war-waged land as a child to huddle uncomfortably in the relative calm of Los Angeles, Khakpour spent the majority of her formative years —

“from age five through high school, the four of us, two upper-class fallen aristocrat Royalist Iranians, who left everything behind and raised two lower-middle-class children in a tiny apartment in South Pasadena, California”

— waiting to return home. She did not belong there in the rolling hills of the city, and she was told this, over and over again:

“‘This isn’t your home,’ my father would say when we got to the U.S. ‘We’ll be going home again one day soon.’ He said that for three decades. Maybe he still says it.”

Her father is not the only one: the whole world seems against her as Khakpour describes to her readers almost every imaginable attack, physical and mental — racism, two separate car accidents from which she was lucky to walk away, ups and downs with men and her feelings of being defined by them, addiction, depression so deep and dark it leads her, teetering, to the brink of suicide, an unknown illness that plagues her night and day, and this overwhelming sense that no matter where she is, she is being pulled somewhere else. Often, not by her own wishes, either. The pressures of money, work, her rapidly deteriorating health, fears for her safety — all this and more pushes and pulls on Khakpour and dictates her next move, her next step. The next step in survival.

Even the narrative structure of the book alludes to the displacement and unwelcomeness within her own body or anywhere else. Khakpour plods along, bouncing back and forth from Los Angeles, her parents home (“I can’t recall a time when I felt my parents’ home was my home”), back to the city she always longed to be in, New York, searching, touching down in random locales for residencies and job opportunities, tossed from doctor to doctor like an unwanted kitten. Each chapter takes place in a different city, outlining a new moment in her journey. As she says,

“My parents always called me a wanderer, poked fun at my comfort with a sort of homelessness, my wanderlust something chronic, less leisure than discomfort.”

Discomfort follows our author from Iran to Los Angeles to New York, Maryland, Illinois, Pennsylvania, Santa Fe. It is all she knows:

“I am not a poster girl for wellness. I am a sick girl. I know sickness. I live with it. In some ways, I keep myself sick.”

In the end, this was what drew me in so tight and held me in Khakpour’s rambling, colloquial sway: her constant admission that while, yes, a single bug bite derailed her life as she knew it, keeping her in a loop of doctors, disease, and discomfort, ultimately that is not the only injustice of her life, but perhaps one that she has her own hand in. There is a lot of blame in this story, but Khakpour owns up to a lot of it, too. Her journey feels real, not contrived. This book is not only an angst-ridden wail at the injustice of the universe, but a hard examination of the systems that make up our world: the American healthcare system, American culture, the standards by which we live our lives, our treatment of the self and our treatment of the sick. As a cisgender, white, healthy, middle-class woman living in the Pacific Northwest, I am not exposed to the treatment, to the fear, that Khakpour was delivered weekly, if not daily. I have no experience with her experiences of targeted racism, targeted discrimination, of all the targets on her back. Yet, we all still know the story.

Please don’t take me somewhere where they are racists,” Khakpour pleads to a black paramedic trying to take her vitals on the floor of the Marriott Hotel as she “convulsed, foaming at the mouth, going in and out of coherency [. … The medic] looked appalled, and I realized she thought I was white.” Subjected to the (inaccurate) racist comments of a twitchy tow truck driver assigned with picking up Khakpour after her car collision with a semi, the tow truck driver:

“[took] an interest in two things: my not being married and my name. Eventually we got into it: Iran and Muslims and 9/11 and the Paris attacks, and after I realized this man was not going to hit me, I was so focused on not letting him hurl anything racist at me that I barely remembered the accident. At one point he said, ‘I’m gonna be honest with you, you Arabs have not been my favorites, you know?’”

Khakpour’s whole identity is bound in a handful of markers, tokens, face-value statistics that pin her down and label her for generalization and identification:

“I had my first good experience with an ER doctor […] who knew Lyme well and who nodded knowingly when I repeated my concerns about race and ethnicity [. …] It was a godsend when someone would understand me in these moments. When someone would get that I’m a former addict. That I don’t look like what you might expect. That I’m a brown Middle Eastern woman, though every time illness turns me white — thin and pale to the point where everyone congratulates me as I transform to my sickest, a white woman in appearance [. …] Every part of me in illness became the white woman of their dreams.”

I picked up this book for a number of reasons, not the least of which being that I am a memoirist myself and relish the chance to view the nitty-gritty of people’s most intimate lives through such a fascinating scope as the lens they turn in on themselves. But I was enthralled with this book because of the story. Not just the words on the page, not the ebb and flow of syllables and syntax, all of which were beautiful and bespoke her maturity as a writer and a woman — but what she had to say, and what she had to give to her readers.

Lyme is a disease with so little known about it. That part of Khakpour’s story is a credit to science, to people whose fevers and faintings and depression and insomnia sound so familiar. The other parts of Khakpour’s story are not so unfamiliar, but might as well be undiagnosed for how much they are ignored, for how much the brown Middle Eastern women in this country are ignored, or worse, blamed. Khakpour is not the only one in this country who is sick. Our whole system is sick. We know the cause of the problem; she shows us that — ourselves. So, what is our course of treatment? Perhaps Khakpour is part of it — the chance for a voice so strained by hurt and fear and pain to still rise and sing and tell.

PAIGE M. FERRO is Deputy Editor at Alternating Current Press. Her fiction has appeared in Foliate Oak Literary Magazine and She holds degrees in Creative Writing, Literature, and Spanish from the University of Montana, and her writings focus on Queer Studies. You can find her online at her website.