Credit: Sylvie Rosokoff.

What is the body but a first and imperfect home? And if the body is a home, then illness can be like an eviction notice, or a bad deed of sale. Illness can make you a vagrant.

Porochista Khakpour’s recent memoir, Sick, has been described as a narrative of malady, but it is also a story of displacement. Born in Tehran in 1978, the writer was a child of revolution and war, and then a refugee; when she was three her family fled to America, which for decades her father insisted was a place of temporary settlement. As an adult she has been in almost perpetual movement, and Sick is structured by the cities (among them, LA, Leipzig, Santa Fe, New York) that she passes between, and the various men who shape and bear witness to her life. At the center of the book and this enduring rootlessness is late-stage Lyme disease, a host of nebulous ailments. But even before any diagnosis, Khakpour experiences herself as ethereal, barely there, only very loosely tethered to a body that cannot be the house of her. “My shell was not something meant to contain me,” she writes. This lack of wholeness, a sort of fading, makes her feel like a ghost, and also like a woman.

“I want to have substance,” Khakpour, the author of two novels and an essayist, tells me in the interview that follows. “I want to exist. You think of the coming-of-age narrative, and I’m still coming of being.”

Lyme, which is caused by the bacteria Borrelia burgdorferi and transmitted by a tick bite, is a controversial disease because unknowable. The symptoms of it are countless and ever-shifting, testing is flawed, and, as Khakpour points out here, nearly every patient who is diagnosed with Lyme is the beneficiary of some psychiatric diagnosis, too. She herself struggles with afflictions ranging from lethargy, neuropathy, and extreme dizziness to addiction and insomnia, and to be taken seriously, to be heard and believed. In the cultural imagination, Lyme and other poorly understood disorders are considered the province of women and women are considered unreliable narrators of their own pain. Doctors who claim to recognize the physicality of Khakpour’s illness still ask that she take drugs for the mind so that she might “clear a path” toward her bodily suffering. Desperate for the name of her sickness and then for a cure, she visits a psych ward, a Sufi healer, a hypnotherapist, a woman who stings her with bees and to whom this memoir is dedicated, many emergency rooms. As of her writing, she had spent more than $140,000 on treatment.

Sick is not redemptive. Khakpour doesn’t get well. The book mirrors the tender mess of her everyday; it is feverish and dark and beautifully disoriented. But, while utterly interior, it also carries forward a cultural conversation at the intersection of health, politics, gender, and race. In one searing interlude between chapters, she reveals that when she is especially sickly and pale and underweight she’s often taken for a white woman, and congratulated on her appearance. “Could it be,” she marvels below, “that the identity that allows me to be in this world the most is that of a chronically ill or disabled person? Is that the one that will allow me entry to the world of white establishment?”

Khakpour welcomed me into her Harlem apartment in a bathrobe, crowned by a coiled towel, sputtering apologies. She had wanted to receive her guest, me, with washed hair, but the washing is always slower than anticipated because it triggers joint pain. We settled in on the couch, by steeples of books rising up from the floor, and began a sweeping conversation punctuated by the chugging of an oxygen concentrator. Khakpour is hyperarticulate and extraordinarily generous, which meant that I continued to pitch questions even as a car waiting to take her to a speaking engagement idled outside. She answered them all with such kindness, reflecting on the mind-body distinction, glamor as resistance, and how we are only ever in the middle of our own story.

Hillary Brenhouse for Guernica

Guernica: At the end of Sick, you mention the book you sold, a memoir about healing that had a neat, buoyant ending. When did you realize that you wouldn’t be able to write that book and begin on this one, the book you wrote?

Porochista Khakpour: When I had that car accident and concussion at the end of 2015—that was the moment when I knew this book was going to have to change. That threatened the whole writing of the book. It’s one thing to have Lyme disease, it’s one thing to have post-traumatic stress, but then to have another major life event, like a car accident, happen on top of that… I had sold my memoir in the late spring of 2015, on proposal. That summer I tried to rest more than usual. I felt like I didn’t know how to write my book, and so I was reading all these other memoirs. I was struggling. I think I knew in my heart that that book wasn’t really the right book. It was going to be a thing of, “Now I’m better! You too can plow through Lyme.” But I’d had a bunch of small relapses already at that point, and I knew that wasn’t really the truth. I was hoping the book would save me into that perspective. When the car accident happened, that was right around the time I was supposed to deliver the manuscript—I was still grappling with it and hoping for an extension—and that threatened my life in a very dramatic way. It meant that maybe I wouldn’t be alive to finish that book.

The book has been through several hands at Harper Collins. The first time I met my new team was only a couple of weeks after the concussion. I had lost my ability to sleep again, and I went there with my cane, so fragile. I said to them something like: “I need to do this book, so I can survive. And I don’t know how it’ll happen. But I need to do it.” When I would go to the NYU Concussion Center, one of the many things I said to them was, “I need to be able to write.” And they said, “No, no, no, you need to get away from your computer, you need to just drop out of the world for a while.” And I kept begging them. In all the neuropsychiatric testing they did, always my ability to express myself came really high—whereas I couldn’t even put some children’s blocks together sometimes. Or if I looked at a chart with numbers on it, sometimes it would make me scream or cry. But I kept holding on to this ability to express myself, which since I’ve been a child has been my way to deal with stress. Some people worry about losing their sight. I worry that if communication goes, then I’m actually nothing.

Guernica: Storytelling plays such a pivotal role in your life. You’ll call a friend up in an especially difficult moment and ask them just to tell you a story. I found that so moving.

Porochista Khakpour: I might get emotional, because I’m still in it. I didn’t expect to be having such a bad relapse right now. Often I feel like anyone coming here—like you, to do this interview—anyone trying to connect with me, is really life-saving. There’s an alienation that I talk about in this book, a loneliness that comes from not feeling like you’re in your body. I don’t feel grounded often. And so those moments of things resonating, of someone understanding you, are for me an incredible, incredible gift. And they’re the only thing that really makes my life worth living, because otherwise it’s just very hard. What is the point of us being here on Earth? Is it money? I think it’s to connect with other human beings, whatever that may mean—whether it’s writing a book or talking… I constantly think, Look, here we are in this moment. You’re alive here, I’m alive here. There are a bunch of people outside, they’re alive. This is actually a miracle. It sounds a little bit corny, I guess, but I have to constantly think that way.

Guernica: I want to talk about the unknowability of Lyme, its mysteriousness in the public imagination. Even the medical professionals in the book who recognize your symptoms as physical ask that you begin taking drugs to treat mental illness to “clear a path” to the answers. How to keep fighting for the physicality of a thing when everyone is trying to tell you it’s happening in the mind? And why are we so wedded to that distinction, which dictates that whatever takes place in the body is “real”? Isn’t everything that’s in the body also in the mind?

Porochista Khakpour: I used to feel very differently than I do now. Every time people would bring up the mind-body connection and say, “It’s in your head,” I would be very much defensive and say, “No, this is in my body, this is in my body, stop saying that, take me seriously.” I still feel that to some extent, when people want to tell me that it’s purely psychological. But I don’t even know what that means. How can anything be purely in the body? Your mind is what processes things. Without the mind putting its spin on things, what are you? It’s hard to say.

I also think that post-traumatic stress, for instance, is something that creates a toxic load. It’s just another toxin, you could say. It’s not a coincidence that when a lot of people have Lyme flares or relapses, post-traumatic stress becomes a major part of their experience, whether it’s through depression, anxiety, or other, maybe more complex, psychiatric disorders. Some people can go into full-on psychosis; I’ve been there before. It’s a little bit chicken-or-the-egg to some people, but I think they just come together. And I don’t mind people now, now that we know that I have Lyme, it’s unequivocal, it’s CDC-level Lyme. [Khakpour’s case is recognized by the Centers for Disease Control and Prevention, which requires five out of ten bands—the bands represent antibodies to different components of the bacteria—for a positive Lyme test result.] CDC-recognition is for me like an achievement, like having a BA or an MA; I have these numbers, and in America everything is quantitative. I don’t have to fight that fight anymore for people to believe it’s a physical illness. So now sometimes I like the idea of trying to survive it mentally. I’m more open to that than I used to be.

The worst of my relapses was right around the Paris attacks, which came right before my car accident. A lot of these things are really hard for me because they bring me back to when I was a child and first came to this country, and the stresses of that. PTSD has been, maybe even more than Lyme, the most helpful diagnosis I’ve had. It explains so much about my mind and body, and perhaps even a lot about how my body has dealt with Lyme, both in how destroyed it can get and in how it wants so badly to survive.

Guernica: Right now there’s a national conversation taking place about believing women, and a whole slew of books about gender bias in the healthcare industry, and taking women’s pain seriously, have come out. You mention in Sick that women are dying of Lyme the fastest.

Porochista Khakpour: With Lyme you just constantly get gaslit [laughs.] All the time. It’s something you learn to live with. I’ve learned how to make people hear me. It’s the same way I learned how to get teachers to listen to me when I was kid. They’re never going to call on me even though I have my hand up; I literally have to karate-chop the guy next to me, I have to hide my California vocal fry and imitate some big, booming thing. At that point I’d become as a foreigner, what they’d call “savage” or “barbaric.” I had those words thrown at me in all sorts of ways. But that was the only way I could possibly be heard. So you have all these strategies that have everything to do with gender.

All over the country women are the ones who are getting destroyed by Lyme. And I think that’s a bunch of things: I think they don’t get believed and they don’t get treated in time, and a lot of these drugs have not had proper testing on women’s bodies. In the midcentury and all the way to recent years, it’s been mostly men, and mostly white men. We may have very different reactions to a drug that a doctor’s seen on a bunch of men. They’ll often say, “That side effect, hmmm, I’ve never seen that, that can’t be right.” But it is, I know it is. I sense this every time I go to an ER. They’re like, “Oh, no, here’s a woman, here’s that complicated woman’s body, so we have to give a pregnancy test, we have to ask about their period…” Of course they’re not even going to ask you if you’re pregnant or not, which most people can answer. Instead they just do it. It’s almost laughable, the bias against women in the healthcare industry. You have to constantly advocate for yourself. These days I think it’s getting a little bit better, mostly because of women doing this work and these books coming out. We are unfortunately having to teach the medical community how to be.

Guernica: You write that chronic illness is a woman’s burden. I gave a fist-pump when I read that.

Porochista Khakpour: People will say this oftentimes, I’ve heard men say it: “Why is it that women are always sick?” And they’re basically trying to say: hysteria. I often am like, “Why do you think? Have you ever gone with a woman to a doctor?” Since my concussion period, a lot of my male friends have come with me to the hospital, and they’ve said, “Wow, I know what you’re talking about now.” They would notice how differently the doctors would speak to them versus me. And how the minute my male advocate is gone my treatment is completely different. It is really crazy.

Guernica: The image of the ghost is recurrent through this book. You write that the lack of wholeness you were experiencing made you feel like a ghost, and also that that lack of wholeness is one definition of femaleness, “or so they would have you think.”

Porochista Khakpour: In so many ways that metaphor kept sticking to me. One is this feeling of being invisible all the time. I never take up enough space, other than through my writing or sometimes my speaking. That’s been a feeling that always existed in my household. My parents would ignore me and I would just write. So I had a sort of weird invisibility in their space. And then onwards, among Americans who thought my identity or my name was too complicated for them to grapple with, so I was just ignored. And there’s a way I feel that on a very physiological level, an eerie lightness. Part of it is I have very low blood pressure. I don’t feel grounded. I often feel like I’m floating a little bit, I’m always close to fainting, I don’t always feel like I’m fully here. A lot of those things I felt were metaphors for this awful concept of a woman, this idea of the Victorian smelling salts, dragging a woman who is ailing and pale to bed, and I resented that image. But at times I’ve had to inhabit it.

And it’s been very uncomfortable, because I don’t want to be that ghost, I don’t want to be that woman in bed constantly fading in and out of consciousness. I want to have substance. I want to exist. You think of the coming-of-age narrative, and I’m still coming of being, coming of being human, in a way. I think it’s just from displacement at a young age. No one should be exposed to that much revolution and war and constant moving around as a young child. It changes you forever.

Guernica: This felt to me like a memoir of displacement.

Porochista Khakpour: I think that’s right. You are going from place to place and trying to find where you belong. It’s been interesting how many different Americans relate to that feeling. When I wrote my second book, The Last Illusion, I was writing this outsider parable, and it was amazing to me how many Americans were like, “Oh, I always feel that way.” And I was like, “Is being American just a state of constant outsiderness?” That’s why we always get our identities wrong here, or we fight for them in these messed-up ways. I use “we” lightly. I hate the idea that I’m part of this country that has this bloody legacy, but of course I became a citizen in 2001. The American psyche is completely diseased because it has that sort of psychosis of identity at its core.

Guernica: No one feels at home.

Porochista Khakpour: No one feels at home. Exactly. And the people who should feel at home, like the Native Americans—look what we’ve done there. It’s brutal.

Guernica: Large chunks of this story take place around the time of the Paris attacks, as Islamophobia is ramping up. You grapple with that here, with being a woman of color from Iran in “a season of hate crimes,” and also talk about often being mistaken for a white woman in illness. Passing while ill, essentially. What is that like?

Porochista Khakpour: So, right now I’m not at my lightest weight, but I’m toward my lightest weight. And I’m pretty pale for me; I have very bad anemia. It’ll be right around now that everyone in my world, including friends, will tell me I look great. People will sometimes say, “Man, you look amazing right now. What have you been doing?” And I’ll say, “Well, what have I been doing? Decaying, that’s what I’ve been doing. At times, dying. That’s what I’ve been doing.” Sontag writes about that so beautifully, illness as metaphor and how we’ve sexualized it—like the tubercular patient as an erotic sort of concept. This comes from Europe, this idea of the ill person either flushed with fever or pale and translucent with dying, being just barely there as being beautiful. We think this is a modern problem, that it’s all of our magazines and media, but back then you had paintings.

The level at which I talk about it here has a lot to do with whiteness, and the acceptability of whiteness. I was in an airport yesterday. And in airports I use a wheelchair and have a cane and oxygen, and that immediately gives me a pass into the world of white people. Because Lyme disease, you could say, in many ways, is a white person’s disease. This is incorrect at its essence. But it’s usually white people who have come out with their Lyme stories, though I’ve been trying to get more people of color to talk about it. And also it’s because of the parts of America where Lyme has been heavy, like Connecticut or upstate New York. There’s a certain type of affluent white person who knows a lot about Lyme. When white people ask about what’s wrong with me or I offer them the information, it’s amazing how suddenly it’s, “Oh, gosh, Lyme.” They’re so relieved. We can connect on that. And I’m a little bit relieved too, for a second. This person could have been a racist, and maybe still is, but we have this thing we can talk about. At airports the flying-while-Muslim issue gets shelved for a second, and instead they’re like, “Oh, a disabled person,” and they focus on that.

It’s kind of a terrifying thought for me: Could it be that the identity that allows me to be in this world the most is that of a chronically ill or disabled person? Is that the one that will allow me entry to the world of white establishment? Because I never had proper entry.

Guernica: On Instagram recently you reacted to people glamorizing being ill. You were essentially saying, via a photo, “This is what sick really looks like.”

Porochista Khakpour: I’ve been talking a lot to my dear friend Suleika Jaouad about this issue. Because the various illness communities write us a lot, and they either find it really uplifting when we put on makeup and a fancy dress and go somewhere or they’re upset at us, they feel betrayed. There’s something people want out of people who become, let’s say, low-key icons of illness. There was a moment when a lot of us were talking about glamor being resistance. But I had to realize that’s a tactic, because there’s no way one can be glamorous when you deal with this much pain. You can show up to an event and try your best. But the reality of it is most of the time I can’t wash my hair. I just did it today for the first time in weeks. I can’t really shave my legs. I can’t really do all the things one is supposed to do to look right, much less glamorous, in this world. Both of my cultures, American and Iranian, put an awful lot of pressure on being the right way. I don’t know what the right way is, so you just kind of let it go and try your best.

That’s where I’m at right now. It’s hard to know what is the best way to show up. I’m showing up sometimes these days and talking to someone and running my hand through my hair and a bunch of hair falls out. I’ve been places where I’ve choked on food but still stayed at that table. I know sometimes people look at me and how I eat and they think it’s disturbing. But I turned forty recently, and now I think, Let them see it. One of the things I love about New York City is you have all these great old ladies walking around and they don’t give a shit. They’re totally themselves. And I always feel inspired by them.

Guernica: I’d love to hear about the illness narratives that have influenced you and what you were reading during the writing of this book.

Porochista Khakpour: There are some addiction and depression memoirs that I’ve always loved. Susannah Cahalan, who gave one of my blurbs, her Brain on Fire, which is remarkable. William Styron’s Darkness Visible was a model, in a sense, for this book. It really just relies on his own narrative; there’s not a lot of other cultural or sociological analysis. He just told the story of his own depression and it had a lot to do with meds, and he named the meds. That’s something that today would seem really taboo, to name the meds, just like you need to look an enemy in the eye and say, “You hurt me.” So I said, when it comes to this book, I’m going to name the meds. If there’s a villain in this book for me, it was these meds. And I realize that these meds have helped certain people, and in fact my best friends are on some of these meds. You could say I’m an addict and that’s why I didn’t do well with them—whatever it is. But Styron went there and was able to look his adversaries in the eye. I really wanted to have that same boldness here.

I know that cultural criticism is something people like. In a way I like it, too. But I felt there was something false in the idea of leaning on cultural figures throughout history to justify, or to somehow find my way through, my own narrative. I felt that it was unfair to them and in some ways unfair to me. I am an immigrant and a refugee on political asylum and there’s not a tremendous amount of models, there aren’t a lot of Iranian-Americans who’ve had Lyme disease or struggled with benzo addiction, so why would I then take Audre Lorde and her cancer journals and say, “Audre, you are me and I am you”? That’s incoherent to me. Even though Audre Lorde, for me, is life-saving. There’s a Lucille Clifton poem that I love so much, “Won’t You Celebrate with Me,” and it’s always been on my desk. And that was going to be an epigraph. But then I asked myself, “Why I am doing this?” I don’t want to drag Lucille Clifton into my mess. I just felt that wasn’t the right way to honor these writers.

You have to have a confidence to get to that point. If I would have written this book when I was in my late twenties or early thirties, I would have had tons of cultural criticism, tons of big words. In this book I tried to write really simply. I just wanted it to be as close to my speech as possible, heavily reliant on my own colloquialisms, my own slang. I explain things the way you would to a child, and sometimes that’s more interesting.

Guernica: You organize this book not just by place, but by your relationships with men. And you write that these boyfriends, who have at times and to varying degrees been your caretakers, “serve as echoes of my memory, as witnesses, as invisible testimony.” There is this lingering question about whether or not, or how much, you can trust yourself. I wonder about the power dynamics at play here.

Porochista Khakpour: There’s a fine line between being taken care of and being controlled. I always feel somewhat consoled when someone else is my parent because I had to be my parents’ parent in some ways. At the same time that’s a very dangerous game to play, because if you’re in the wrong hands, things can go awry very quickly. It’s a good thing to think about power when we talk about love. And when you’re vulnerable, whether it’s through addiction or illness or whatever, you can only be in so much control, or you can only have so much power.

I didn’t put my relationships with women or people of color in this book. Partially, I thought, I’m sick of books that punch down. I had to think honestly to myself about what has really gone wrong in my life. A lot of it was trying to fit in with white establishment. And a lot of it was doing time in the world of white men. Where things go wrong is where people had a lot of power. And where did power lie in my story and where does it lie now? In the world of white men. It was always very important to me to be accepted by them. What is worth it? No. It just made me sicker and more desperate. I was going into those relationships with white men oftentimes ready for battle. I realize that the bulk of my relationship history has been with people I knew were wrong matches for me. People have asked in other interviews, “Why do you always write about men?” Well, because I have seen them since the beginning of my life as the problem.

Guernica: The book never quite resolves the question of your illness—how many of your symptoms can be attributed to the Lyme, and if in addition to the Lyme there are other maladies, a breakdown. I imagine that that’s because you just haven’t found those answers yet.

Porochista Khakpour: It’s become less useful to me to even try to think of an order of operations. The body is this weird chaos, and the world is this weird chaos. And we don’t have explanations for why we’re alive and why we die. That’s the real problem; if we have to get down to it, we can’t explain our existence. To create this neat chart of how and why I feel day to day is not going to help. So I wanted that feeling in this book, too—that it’s chaotic. The medical world wants us to have these really neat narratives. When did you see the bite? When did you see the rash? And when did you feel bad for the first time? But very few people can answer those questions honestly. Most people don’t even see the bite. It doesn’t work that way. How do you even know where the illness begins or ends?

We’re all kind of fumbling as human beings. To be honest is very messy. It doesn’t always look good, and it doesn’t always read good, but it’s the truth in that it’s trying to really get to what it means to be ourselves at a particular moment in time. I wanted this book to feel never-ending. I started to find narrative very frustrating, the idea of beginning, middle, and end. There is no ending. Whenever a doctor or some healer gets to you, you’re still in the middle of your story. We’re always in the middle of our story.

Hillary Brenhouse

Hillary Brenhouse is co-editor-in-chief of Guernica and a Montreal-born writer focused on women’s issues and religion. Her work has appeared in The New Yorker online, TIME, the Daily Beast, the New York Times, the International Herald TribuneThe Oxford AmericanSlate, and on PRI’s “The World,” among others.

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