The first time I ever heard of Porochista Khakpour was when I stumbled upon her GoFundMe page in 2012. At the time, the author had just been diagnosed with late-stage Lyme disease and had, she wrote, “nearly $20,000 of bills from ER visits and hospitalizations and alternative therapies and we’ve JUST begun to understand my diagnosis.”
Her new memoir, Sick, tells the story of how long it took to receive that diagnosis, and takes readers on a harrowing roller coaster ride of mental and physical illness, addiction, trauma, and the struggles (and triumphs) of “making it” as a writer.
That makes it sound like a very dark book, but I assure you it is not. Though this is not a story of overcoming illness, Khakpour is an utterly captivating storyteller, and her sense of humor and warmth makes it very easy to understand why she is so beloved amongst her friends, peers, and fans. I laughed out loud at this description of the author by her father: “A cross between Salman Rushdie and Paris Hilton.”
Khakpour estimates that she has spent more than $140,000 so far in living with this disease. Her candor about the costs of the disease, as well as her honesty about her own financial reality as an artist, was one of my favorite things about this stunning memoir. While she was recently in San Francisco receiving treatment—and forced to once again crowdfund for medical expenses—we talked about the difficulty of receiving good medical care in America, the spiritual side of wellness, and the blessing of online community.
The Rumpus: How are you doing?
Porochista Khakpour: I’m in pretty rough shape. I was supposed to be on a fellowship in Italy right now. Instead, I did the responsible thing in dealing with my health and that has not been easy (but was necessary).
Rumpus: You had this unique challenge of writing about something that’s chronic. At the end, in the epilogue, I gasped when you wrote, “The book I sold was a story of triumph.” I was wondering how it was to write a book about something that doesn’t really have an end date?
Khakpour: I was on my Australian book tour for The Last Illusion when we sold this book. It just went to one editor, Cal Morgan, at Harper Perennial. And that was because, for years, Cal was someone who had personally dealt with me and my illness. He’s the editor in the prologue that comes to the hospital with me. He was someone who really knew my story. And because I never really expected to write an illness and addiction memoir, I wasn’t trying to shop around this big book. I just thought this would be a little chapbook that might help a very small audience.
Half a year later, he was gone. And then I had two other editors after that. It’s been kind of devastating on one end because so much of the turmoil of my life has been in this book but also the turmoil of publishing and the turmoil of American healthcare and Trumplandia. It’s a book that’s been composed on very unstable ground.
When I sold it, I thought I was really in remission. I was on that Australian book tour drinking, staying up late, eating whatever I wanted. I was in one of those moments where I was basically in denial of being a sick person, which happens all the time. I consider that part of Lyme brain—where you actually forget you are as ill as you are. You’ve been so sick of being bedridden and so ill, so you become over-exuberant.
I was in a place of celebrating being alive. I really thought that was the story. But in a way, I’m happy that it isn’t that story. In a narrative sense, the book you end up with is more honest. The fact that I had to write the bulk of it after a severe concussion was one of the challenges of my life.
Rumpus: You wrote most of the book after the car accident with the truck? [Khakpour was driving home from a teaching job at Bard College, when she was hit by an eighteen-wheeler tractor trailer.]
Khakpour: The book had sold that spring and the car accident was December 2015. I had still been toying around with drafts. It wasn’t in good shape yet. And then, a few days after my concussion, I was actually meeting my new team (Cal had just left) and they were like, “Can you do this?” And I said, “Yeah. I’m just going to somehow do it.” I basically rewrote it in the next few months, while I was in substantial therapy at NYU Concussion Center: vestibular therapy, physical therapy, and neuropsychiatric therapy.
Rumpus: You came up with an interesting structure where you’re moving chronologically and there’s this mystery drawing the reader along: When is she going to be diagnosed!? But then there are these interludes that seem to be written from a more present, reflecting narrator.
Khakpour: The book is almost like an autobiography; it goes through almost all my life in two hundred pages because I don’t know when I got [the tick bite]. There’s a mystery element here. I realized it was almost like a murder mystery because you have a body that’s destroyed and whodunit? Or, how many done it?
I could have been infected more than once by a tick. We’ll never know for sure. I’d been in so many high Lyme areas, mostly because of teaching and writing.
And so the interludes were a way to give a different texture to the basic chronology of my life. These were asides in a sense, a gesture of updating it. I thought of them as independent vignettes that spoke directly to the audience about questions that I thought they might have, like, How did you afford this? Or, tell us about sexuality. They were a way to step out of the confines of narrative and address some other issues. As the book progresses, we got deeper into America’s healthcare crisis and Trump’s reign of terror, and more and more issues needed to be addressed. I still feel like I could add another ten interludes to the book.
Rumpus: Everywhere you go in the book, everyone’s warning you about Lyme and ticks. And yet, you go to all these doctors and none of them think “Lyme disease.” I wondered how you reconcile that? Is it that these doctors aren’t paid through insurance and so they aren’t looking for it?
Khakpour: There’s medical bias against young women or people who present as young women. They would rather think that anything is purely psychological. And of course, there are very psychological aspects to Lyme. But they would rather see a woman like me and ask all these questions about background and come to the conclusion that this person is having a nervous breakdown. When I was very thin, doctors assumed I was anorexic. They have all these other places their minds go. And so they sometimes won’t go for things that actually should be quite obvious. If you have a whole host of really mysterious symptoms, and you’re in the Northeast, why wouldn’t your mind go toward Lyme?
One reason is that a lot of these doctors don’t want to go down a complicated road.
Rumpus: This is compounded by the fact that, for much of this, you didn’t have health insurance and you just had to go to the ER when you were having a medical crisis.
Khakpour: It was beyond my comprehension, the idea of affording these integrative or functional medicine doctors. I didn’t even live in one place long enough to have a family doctor. No one knew who I was or what I was about. I still struggle with this. I’m in San Francisco now, starting relationships with new doctors. Today I was at a hospital to get an esophagram and it was exhausting just doing the outpatient registration. The woman wasn’t letting me fill out the paperwork; she was just doing it orally. And she asked, Where were you born? What’s your religion? And are you married?
And I was just like, Is that even legal to ask? Isn’t that optional and parenthetical?
I was really proud of myself, at forty, for saying that. Earlier, I just shrunk and answered whatever they wanted and then felt bad about it. A doctor would make a note, “Born in Iran.” In another session, they’d talk to me about, “Well, it must have been traumatic, your early childhood…”
Okay, yeah, but also that’s not necessarily what we’re dealing with here. Can you guys stay focused?
Medicine, and you could even say health and wellness communities, they’re really in the business of profiling. You walk into a hospital or a doctor’s office: Do you have tattoos? Is your hair combed? Are you overweight? Are you underweight? What do you present as? They have to make a lot of calls based on what you look like and that can go all sorts of directions.
Rumpus: Through this experience of sickness, you’ve developed such a keen sense of awareness of yourself in these clinical environments and it sounds like you’ve gained a certain level of confidence in dealing with them.
Khakpour: I have to. It’s exhausting because I’m often very tired and sick when I’m at the doctor. You don’t want to have to raise your voice or speak strongly when you’re feeling ill. At the same time, you have to, to be heard. You have to put on a certain persona in order to get somewhere with these guys.
The devastating part of being human is that no one knows the experience of your body truly but yourself. With a disease like Lyme, you lose the thread a lot. Now, I’m very grateful for having a doctor who runs a lot of tests because I actually like the data.
Rumpus: As I was reading, I was struck by the difference between healthcare and wellness. Healthcare is like you being able to be a person and do your job and not feel insane, but wellness… I thought of Sonya Huber‘s essay collection Pain Woman Takes Your Keys, where everyone asks her, “But have you tried yoga?”
Khakpour: I was just looking at my Instagram messages and several people are recommending medical mediums and intuitive healers. I get it. I get that those people could work. I know what’s going on with me. I have the numbers. It’s just funny that that’s where people’s minds will sometimes go. I can’t tell you how many healers have been recommend to me, and there are even a few I’ve tried.
Rumpus: Has your own reaction to this advice, or this wellness world connected to spirituality, evolved over time?
Khakpour: I’ve always been a spiritual person, but I’m very phobic of fake spirituality and magical thinking. But I don’t know how to explain what I mean by the non-fake version, my mother’s guardian angels or my grandmother’s Sufi spirituality. I believe in God and religion in a lot of ways and I’ve participated in the more faux Western yogic trendy spirituality at times, but I’ve always been a little skeptical of it. I don’t want to dis it too hard either. I get why people need it. I get why people go there. My whole approach is a little bit of Eastern, a little bit of Western, allopathic, alternative. I like to spread things around.
Rumpus: It was refreshing how much you talk about money in this book. And not only did you give us the costs, you keep finding these relationships where you’re adjacent to wealth.
Khakpour: This is the thing: a lot of people will die before knowing they have Lyme. Because it requires a lot of money to get diagnosed properly. And then it requires even more money to get healed. It’s sad to think you have to be able to afford this disease.
And I think, Oh my God, how many people have died from it and didn’t know? Or how many people are currently dying from it? When you go to upstate New York, you hear about people who’ve lost their battle with Lyme because at a certain point, it’s just very very hard to afford it.
I was talking to someone online recently about how eating clean is really, really expensive. Just that thing alone. Sometimes I can’t drink tap water and that’s expensive. I’ve always cut corners on that; now I can’t.
Rumpus: The other element intersecting with this is being a writer, working in this gig economy. Your father still works as an adjunct. It’s what you grew up with: to be able to cobble together a living however you can.
Khakpour: My mom, in her late sixties, and my dad, in his seventies, are both still working. Their lives have never been easy here. I wish that they could retire and enjoy their life. While they haven’t really been able to pay for my illness, they’ve certainly been there along the way in different ways. A year ago, my mom was like, hey, Alec Baldwin had Lyme! Part of me was so annoyed: why does it take Alec Baldwin to really pay attention? But they now understand, even though I think they’re still baffled by a lot of it.
Rumpus: As a reader, I felt a lot of sympathy for them and a lot of sympathy for you.
Khakpour: If I had written this when I was younger, it would have just been a lot of anger toward everyone. One thing I made sure to do is to round up on people, mostly thinking of myself in the future and trying to imagine a time when I’d be as distanced as I was from certain angers that I was already distanced from, and to really focus on the problems. The individuals are a problem, certainly; they were stressors—just like environmental toxins can be stressors. They weren’t the real problem. The real problem was this disease. And institutions. And American healthcare. Those are the culprits.
Yeah, I had abusive boyfriends and parents who didn’t always understand and I myself was flailing and not always together. But there’s an obvious problem, an enemy, here, and it’s not who we think it is. We want to blame everybody when illness strikes.
That’s why I hate the vocabulary that people with cancer have to deal with: “survivors”! And those who are not “survivors.” And “fighting the battle.” It’s so unfair the way we use language because we’re talking about cells and plasma. Again, this is where I don’t like faux spirituality. It’s cruel. Because I don’t like the idea of this is someone’s karma, or this was here to teach you a lesson. No. It was just the body not functioning and maybe because of certain stressors, but maybe not.
Rumpus: It’s like you draw a line with any spirituality that’s drawing some causation between something bad happening to someone’s body and something that they’ve done or who they are.
Khakpour: That’s exactly what I mean.
Rumpus: Lastly, I wanted to ask you about online community, beginning with LiveJournal. It’s still such a part of your life today.
Khakpour: I think people don’t realize how often the people who are online are ill or disabled people. It’s kind of amazing to me how many friends I’ve made who also have some form of illness or disability, who are lying on their beds with their phones, trying to make it through a lot of pain. That’s been a whole new dimension and that’s how my friendship with Esmé Weijun Wang and Suleika Jaouad came about. I don’t want to say you have time on your hands when you’re ill, but you have a different conception of time. And you’re often online looking for all sorts of things, from encouragement to inspiration to information.
Even before that, I was always so drawn to different subcultures, whether in music or message boards about New York City, when I first got on Prodigy in the 90s. I was poking around, trying to make friends with people outside of my little suburb in LA. Those were really important times for me. They saved me. I’ve been depressed most of my life and so having those bonds meant a lot to me.
Rumpus: I think you use the word “misfit” at some point. Feeling unique and singular and looking around you at your school and your culture and not really seeing other people like you, but they’re on the Internet.
Khakpour: I’ve had so many online friends and those are very real friendships, just as real as any other form of friendship. We’re writers, right? Words mean something. And online communication is words.
I’m probably someone who will never get offline because I value it too much. We talk a lot about how it’s not great for mental health. On the one hand, it’s not. But on the other, it actually is.
Author photograph © Sylvie Roskoff.