Illness narratives are a rich and diverse genre of nonfiction, and they capture the experiences, suffering, and triumphs of those who have ceased to be well. In the case of Porochista Khakpour’s memoir Sick, however, there was never a time when the author remembers feeling completely healthy or at ease. Khakpour explores this feeling and details her experiences with late-stage Lyme disease, PTSD, and addiction in her book, and paints a candid and heartbreaking portrait of chronic illness. Bookish chatted with Khakpour about her life, her writing, and the challenges of telling a story that is still happening in real time. We’re so excited about Sick that we named it one of this summer’s must-read nonfiction books!
Bookish: What was it like to share such an intensely personal story? Did you have any hesitation about opening your life up to your readers like this?
Porochista Khakpour: Yes. I did. I always identified as a fiction writer. I never planned on writing a full-length memoir; in fact, I never even planned on writing personal essays. People approached me for them. Around 2011 and 2012, I was making a lot of very candid Facebook posts about my journey with all sorts of health problems that turned out to be late-stage Lyme. People were reaching out to me from all over the world who were grateful for how I was writing about it. There weren’t a ton of people talking really candidly about Lyme. It felt like public service to share that story. For me now at 40, with certain privileges I’ve had, it feels safe for me to talk about it. Part of me still worries about how this book is going to be received. It’s definitely daunting. Breathing and existing in the world feels daunting right now.
Bookish: You write about never feeling at home in your body, and also not feeling at home in the world. What was it like to write about these two kinds of estrangement? Do you see them as connected?
PK : That feeling like I never belonged in my body and never felt right was there from the beginning. Estrangement is a constant theme in all of my work. The thing that makes it really difficult is people will look at me and not understand why I feel like an outsider, or why I couldn’t belong in all kind of circumstances. I’m one of those people who visually presents as whoever you want—whatever ethnicity or race is predominant.
For me, the challenge is always figuring out what people’s assumptions are, and how I can actually take up space against their assumptions. Because they’re almost always wrong about who I am. That’s a hard thing to get used to in America. It’s never been easy. Why do you guys always consider me so complicated? I think a lot about white Americans is complicated. That Mayflower narrative and cowboys and Indians—that’s pretty complicated to me! Estrangement should be in the blood of every American because America is a project. We are on Native land here, and the people I know don’t make a daily practice of remembering the blood on the ground here. This was in my head a lot where I was writing this.
Bookish: There are brief narrative interludes that jump around in time built into the structure of your book. What made you decide to tell your story in this way?
PK: The interludes were reflections that didn’t quite belong with the rest of the book. I thought when I started composing the book that the only way I could really write it was like a long essay. It’s the shortest book I’ve ever written—it came out in a gulp. Then we added a prologue and an epilogue about my concussion. A few months after we sold the book, I was in a major, major car accident driving home from Bard. A concussion on top of late-stage Lyme really threatened my life. It was unbelievable how much I had to do to rebuild myself. The accident threatened the book more than anything. It had to be part of the book. Trying to write that was very, very hard. I’m still living through aspects of it.
Collapsing at the AWP conference in DC, ending up at Howard University Hospital—that was something that came up after, and it was something that was on my mind a lot. People would treat me differently when I was ill because they thought I was white. When I am sick, I become very skinny and very pale, and I look very white. I go from BMI overweight to BMI underweight. People respond to me very differently. When I was writing that, I was on the verge of losing my health insurance again. There are all these themes there that I couldn’t interrupt the narrative for.
These sections are there to highlight themes. The book became a backstory and these interludes are the front story. Or you can think of it the other way, too. It had to be told in this nonlinear way in order for it to have truth. This was the sort of book you write to stay alive. The book is this funny thing—it was a book that should have just not existed in a sense, because I was constantly in danger in those years of writing it. When I had sold it earlier, I thought I would never get sick again. I thought I would have minor Lyme reactions and that was it.
Right now, speaking to you, I’m amidst a Lyme relapse. I’m still tempted to add more sections. I would love it if this is a book that sold many, many copies. I could keep updating it and adding forwards and sections because the story will never end. It will never end until I die. I know I’m at a point where there isn’t a tremendous amount of hope for me in being all better. Too many years went by and too much damage was done. To hide and pretend I’m going to be well and then do a book… I’m never going to have that privilege.
This work and talking about this work is the only way that I can have Americans understand what life might be like for someone like me, who lived in this particular moment in time. Even with all of these achievements, I still didn’t have a chance in many ways. I feel grateful to be alive. This book gave me a reason to be alive.
Bookish: Sick is simultaneously about addiction and chronic illness, including PTSD. In some ways, the two are intertwined—the pills you were prescribed for your illness were addictive. What were the challenges of telling these stories together? Do you see them as separate stories, or different threads of the same narrative?
PK: I used to see them as somewhat separate because I felt somewhat defensive. When I went to a doctor, they’d immediately say I had psychological issues. That delayed me getting well and it got me addicted to anti-anxiety meds because it’s what doctors gave me to fix me. But I also knew something else was going on.
Only recently have I been at peace with those connections. We have a more sophisticated understanding of what PTSD is. PTSD can operate like a toxin. Your body can only handle so much stress. That becomes a Lyme relapse. My body goes back to it.
I felt in order to speak honestly toward my story, I would have to let these threads all play out as they did. They’re all kind of a Rubik’s cube: related, tied to each other, sometimes hard to distinguish. I have unequivocal Lyme disease. I have psychiatric symptoms: That’s when I know things are coming. Suddenly, I’ll have weird anxiety and depression that don’t feel like other types of anxiety and depression. Suddenly I’ll have panic disorder. Panic attacks sometimes come from exposure to gluten or something that triggers my PTSD. I’m realizing that there are triggers and the triggers can be environmental or psychological. These things all become complicated.
I wanted my story to be out there like a case study, you could say. What happens when you’ve had so many stressors and such a hard life that you yourself can’t tell what’s wrong with you?
Bookish: Illness narratives are an important and insightful genre of book—Brain on Fire comes to mind. Are there illness narratives that you were drawn to as you wrote your own?
PK: I read a bunch of memoirs and I really enjoyed it. Darkness Visible was one of my favorite books; I read it ages and ages ago. Someone recommended it to me when I was depressed. I was so scared of it and I loved it. It honestly told the story of a writer who seemingly had everything and how that could still fall apart. I had never read a book like that. William Styron is so honest about that. Styron is not afraid to name the medications by name. It was really important for me to give those names. Darkness Visible gave me a lot of courage. If this white guy can do it, why can’t I? It’s always felt like a taboo.
Brain on Fire was something I specifically mentioned to my publicist. Susannah Cahalan and I are close in age, and we came up in New York around the same time. I was aware of her and I liked that the narrative told the story of her relationship and her life in New York—it had what people might think is just the “other stuff,” but that is really essential to illness narrative. You can’t just have illness narrative.
There are so many over the years that I’ve looked at. I didn’t look too closely because I felt like I needed to do it my own way. I looked at those to get courage to do it my own way. If we don’t have those stories out there, people are alone. I don’t know if there’s an exact model like this. I don’t know if there will ever be a time in this country where complicated narratives from Iranian Americans can freely exist with some prominence, but I can only hope maybe someday, long after I’m gone, there will be a body of work from others like me and young Iranian women can read that and say that’s what it looked like.
Bookish: You face many obstacles in this book related to public awareness and medical knowledge of Lyme disease. Do you see this book as helping to change the conversation about Lyme disease?
PK: I don’t know what it’s going to do because this climate is so volatile and so odd. I don’t know if people will even read it; I hope they do. I hope they could read a book like this and actually find some solace in things being about feelings and not just data. I have very little data and medical lingo in this book, and whenever I do include it, I try to tone it down and explain it. I hope this book can reach lots of people and speak a very simple language. I think it’s important for us to be able to speak of that sort of human way.
When I first started writing, it was much more important for me to appeal to academic audiences or an imagined high-art literary audience. The older I get, the more important it is for me to communicate with everyone and anyone. Right now to me, America is in a crisis of constant misunderstandings. Some of it is willful ignorance, but some of it is not willful and it requires people to explain things. We often say as women of color it’s not our job to explain things, and I respect that. But with this book, I’m saying my life might look very different from yours, and my name might be very different from yours, but with this language of speaking about the body and the mind, there may be a resonance. You may also feel like an outsider, imagined reader. I find that really fascinating about this country: No one really quite feels like they belong here.
I have to constantly walk into white establishments, and so many things about me will alienate certain kinds of white people. Illness became a thing, a language that allowed me to connect with the same types of white people I was scared of. When I get on a plane with a cane or a wheelchair or an oxygen concentrator, the old white person who hates Iran and doesn’t understand how I look—we have this other thing we can talk about. They’ll say something anti-Muslim and I’ll say, “By the way you’re talking to one. I’m also from that background you don’t like.” And they go “Oh!” It doesn’t mean they’ll love Iranian Americans, but you can cause that doubt in the minds of the people who have these problem beliefs. I don’t know how to do that for a whole country. Maybe they’ll see the narrative they have is wrong.
Porochista Khakpour’s debut novel Sons and Other Flammable Objects was a New York Times Editor’s Choice, one of the Chicago Tribune’s Fall’s Best, and the 2007 California Book Award winner in the “First Fiction” category. Her second novel The Last Illusion was a 2014 “Best Book of the Year” according to NPR, Kirkus, Buzzfeed, Popmatters, Electric Literature, and many more. Among her many fellowships is a National Endowment for the Arts award. Her nonfiction has appeared in many sections of The New York Times, the Los Angeles Times, Elle, Slate, Salon, and Bookforum, among many others. Currently, she is guest faculty at VCFA and Stonecoast’s MFA programs as well as Contributing Editor at The Evergreen Review. Born in Tehran and raised in the Los Angeles area, she lives in New York City’s Harlem.