Porochista Khakpour’s staggeringly beautiful memoir Sick is a travelogue of sorts. As it moves from Tehran to New York to Santa Fe to Los Angeles, each destination exquisitely rendered, the roads it travels—some pot-holed, some dirt, some shiny and quick—are Porochista’s traumas and redemptions. An addiction to benzos. Being hit by a truck. Broken love affairs. A family in distress. Sexual assault. And at the center lies a grim compass, an unbearable illness, one that, especially in the beginning, doctors refuse to believe is real: Lyme disease. Porochista lays all this bare in an effort to discover the roots of her illness.
I met Porochista on a Facebook thread posted by an established writer who argued against sharing contacts with new writers. A long chain of writers agreed. Porochista was the sole dissenter, which tells you what she’s like: generous. She’ll take you under her wing. She’ll help you through the hard stuff. And this gorgeous generosity carries over onto the pages of her memoir. Porochista writes with gentle honesty and precision, even when the memories are scorchingly painful. Yet somehow through this, Porochista begins to awaken to herself.
Featured on every Most Anticipated Books of 2018 list that matters, Sick unflinchingly examines the challenges of living with chronic illness yet lands us where you might least expect it: hope.
I was lucky enough to communicate over email with Porochista just before Sick was released.
Jane Ratcliffe: “I’ve never felt comfortable in my own body,” you write. Yet you go on to say that through chronic illness you began to feel more at home there. It’s easy to imagine the opposite might be true. Can you talk about how that came to be?
Porochista Khakpour: So, I’ve had multiple identifiers that are “marginal.” (I actually hate that term because I feel like it’s like “minority” and in America all of us who are pushed to those identifiers are actually the majority.) They all pose a lot of problems. There was this feeling I had at one point where chronic illness and disability was finally a home where I could be understood—it was not a good feeling, by the way, but one I’d call a dead-end one. I’ve had many of those in my life. None of my other identifiers seemed acceptable to people around me but illness/disability was a language most people understood, even if they didn’t understand my particular illness or even believe in it. So, my body felt like a settling point. Of course, that settling is temporary, always, but it doesn’t erase that it’s a valid feeling. I am deep in illness all over again now and I do see my body as a home, but a dark cold damp miserable one. I want out of my body all the time, but I am trapped in it, so, well, it’s my unhappy home and I have to make of it what I will.
JR: Countless doctors were dismissive of your symptoms, emphasizing (sometimes cruelly) that they thought it was all in your head. You write, “Women simply aren’t allowed to be physically sick until they are mentally sick, too, and then it is by some miracle or accident that the two can be separated for proper diagnosis.” How did it feel to not be believed by the very people who were supposed to be helping you? What sort of toll do you think it took on your psyche and healing?
PK: It took a huge toll and continues to take a toll. I have so much trauma around this. I have many forms of PTSD with different origins—all sorts of health PTSD, but this is one of the worst. You go through years of this—I have literally been in tears begging and pleading with doctors for years and years. It destroys you to have to do this again and again and it bleeds—pun intended!—into other aspects of your life too. It’s hard for me to have “normal” conversations around illness, whatever that is. I am always somehow defensive. I am always ready to think the worst which has been interesting because lately more and more people seem to actually recognize Lyme and other forms of chronic illness, so sometimes I am ready for battle in a battlefieldless zone.
JR: You’re quite engaged on social media often sharing your experience as an Iranian American woman in today’s America. I’ve learned a lot from you, as I’m sure have others. In your acknowledgements you mention that you stripped the book of cultural criticism, yet I’m curious to know what impact you feel the health of a society has on the mental and physical health of its individuals.
PK: I felt I had to be really careful not to make my book appear like it represents the experience of all chronically ill or disabled America. I mean, the reason I felt I had to write it was because I did not find a lot of stories like mine out there. In that sense I also felt if I paraded around Audre Lorde’s experience with cancer or even Amy Tan’s with Lyme, I would be creating a sort of wonky narrative dilemma: a sort of forced dependency, a connecting of dots, and for what? For whom? For metaphor? To justify my story? To say others were also sick? To teach you facts?
I am a fiction writer first and foremost and I came to journalism and later essays with an interest in their function as service at best. It comes from another impulse altogether. I wanted to be able to tell my story directly to someone without couching it in theory, history, the sociological. I mean, I have loved research and reading all my life. But why pretend I am worth more in some context? Why can’t I just tell my story? I can’t speak for society—I understand the concept of society less and less as I get older, and America in particular seems more and more confusing to me with each month these days. All I am worth is my truth and hopefully that can inspire others to tell their truths too. That to me is a lot. And that to me is what my social media presence is about—I can’t footnote/endnote my experience to make it more acceptable. It’s maybe not even art what I did with this book, just as I don’t think of my social media as “art.” Oh well—is that bad? Maybe not everything has to be capital-A art. Anyway, I drove myself crazy thinking of these questions when I was drafting and redrafting this small but difficult book.
JR: More and more, it seems, people toss around this notion that things happen for a reason. Or that god/the universe doesn’t give us more than we can handle. In terms of your health, how does that sit with you?
PK: I believe in God and I believe in the good of the universe and I can honestly say. . . yeah, I don’t know if things happen for a reason or if we are given just what we can handle. All my relatives think that way and they look for lessons and morals in all things. But there is a danger to that. Was it my karma to suffer physically? Did my relatives who were tortured in Iranian prisons deserve that? I mean, we can go on and on with this all. People think I have had such bad luck. But I find that mostly laughable because I think I have had the best luck: I lived through that and I survived. Nine lives? I’ve had ninety at least. So it just depends on your appetite for optimism and pessimism. I just don’t think the God I believe in is into punishing people—I don’t think any god is that petty, you know? God and nature have bigger concerns, more ambitious schemes, like the balance and harmony and preservation of this planet from its many citizens that seem so intent on abusing it. Anyway, that’s a wild guess, because like everyone I know I have a pretty one-sided relationship with God.
JR: I was so moved by the passage where you imagine a future life in which you are healthy and effortlessly engaged in the world. How easy is it for you to conjure that up? How likely does a healthy future feel to you?
PK: It is not often easy, but it is all I have. I try to live in the moment, as they say, but most of my moments have been uncomfortable so projecting into the future is a way to survive. I can only think of a few periods in my life where things were easy or blissful, where I was free from physical or psychic pain, so I always looked ahead. Often even I achieved my dreams. I have a pretty strong brain. Recently, I have had setbacks and have felt very depressed, to be honest. It has been rough. My body has disappointed me in many ways lately. Still, I hope—it is very hard to kill my hope. It is maybe my strongest muscle. My will to live is pretty strong. I try to dream a way out—or a way in, more likely!—and sometimes it comes. Maybe I’ve been lucky so far.
JR: You write, “To be seen, to be heard, to exist wholly, whether in beauty or ugliness, by a parent often felt like another big step to wellness. I experienced it rarely, but when I did, I felt something light in me that I had long thought had burnt out.” Why do you think it’s so important for family members to truly see and acknowledge what we’re living through?
PK: Well, it is not always necessary but it is a gift to have this. Sadly I know few chronically ill people who have been gifted this. Most people barely have anyone who understands, much less their own family. But when you have these moments when people who share blood with you get it—and it has happened several times with my mother in particular—it really elevates the struggle into something a bit more ethereal and cosmic circle-of-life-y, to put it crassly! It is really hard to get through any failing of the body without some support. Family doesn’t have to be blood, of course—my friends have often been my real family. So has my dog! You just need support and love and honestly it can come from a plant. You just have to be connected to something larger than yourself that you somehow feel a bond with—this is why prayer “works” in a sense. Nothing I feel is more deadly than the isolation we especially experience in the West. I truly believe we are pack animals and we need each other, much more than we want to admit.
JR: A reoccurring theme in your memoir is the loss of identity that can accompany chronic illness. During one of your myriad hospital visits, a young nurse is particularly kind to you and wonders what happened for you to be in such a state. You, in turn, ponder your value. All these many years later, after even more ups and downs, how would you describe your value today?
PK: A great question I am bad at answering. I am working on this issue. It takes a lot of therapy. For much of my life I saw myself as worth nothing more than my work. I didn’t feel appreciated or understood in any other way. I would like to change this idea, starting from myself. I just turned 40 so maybe now is a good time to reconsider this. I’ve thought of myself as a writer for 36 years, and I first published at age 19 (a small article in The Village Voice). My first novel came out in 2007. That’s not the shortest career. I joke about retiring but really I just want to work a bit less. Or more sanely. So I can be reminded that I can be loved by just existing, that I deserve that even. It’s a hard lesson when you’ve seldom been rewarded for it. So anyway, this is my work now, just like writing books and articles, this work of working on myself at last. I haven’t had a second to do it my life. Now I’m starting to. It is hard, it is wonderful, it is impossible. But I feel lucky to be able to ask these questions and receive these answers.
Porochista Khakpour is the author of the memoir Sick (HarperPerennial, forthcoming 2018), as well as the novels The Last Illusion (Bloomsbury, 2014) and Sons and Other Flammable Objects (Grove, 2007). Her writing has appeared in Harper’s, Bookforum, the New York Times, the Los Angeles Times, Slate, Salon, Spin, Elle, and many other publications.
Jane Ratcliffe’s work has appeared in New England Review, The Sun, Michigan Quarterly Review, O, The Oprah Magazine, Vogue, The Huffington Post, Vh-1, Interview, Guernica, The Rumpus, The Manifest-Station, Tricycle, The Detroit News, Teen People and Mr. Beller’s Neighborhood. Her novel, The Free Fall (Henry Holt) was chosen by the New York Public Library as one of the most notable books of the year. Jane holds an MFA from Columbia University.