Painfully honest trials of a ‘sick girl’
The path to Porochista Khakpour’s memoir “Sick” was not easy. The book, about her long battle with Lyme disease, was delayed after she was in a car crash that left her with a brain injury — and then a Lyme relapse. After these events, she decided to change the focus of what she calls a “miracle book” that is “kind of messy.”
The Iranian-American author of two novels was born in Tehran and raised in the Los Angeles area and now makes her home in New York, although she recently left her apartment in Harlem after construction exposed her to materials that affected her health. In “Sick,” she details her quest to understand her illness and seek a cure, her trials in the healthcare system, and her relationships with parents and partners.
As Khakpour visits Los Angeles during her book tour, she spoke with The Times via phone about her writing process and how “Sick” has ultimately saved her life. Our conversation has been edited. You open the book with an interlude titled “On the Wrong Body,” where you explain that you’ve never been comfortable in your own body. With your illness, you write that you will “never be at home, perhaps not even in death.” This is a chilling statement. Why put it at the beginning?
Those vignette sections that you see in there were added later, parts that I felt maybe weren’t explained in the book. If I wrote this when I first got diagnosed, I wouldn’t have had the strength to talk about PTSD in the way that I do here. I would’ve been really reluctant to make that connection because I would’ve been so defensive about the illness itself, and it took me so long to get taken seriously.
I wanted to be as honest and transparent as I could. I wanted to talk about the fact that I don’t know when this illness came to me, but I’ve always had a feeling of unease in my body and all sorts of dysmorphia, but that could mean a lot of things. I mean that could be like, there’s some idea, there’s a chance I got this and other illnesses in early childhood, but whatever it is, I mean Lyme attaches to whatever your vulnerabilities are. And certainly the first three years of life in this world were very traumatic for me and so I don’t feel weird about talking about that. I feel that’s important. Your book is a search for health, career and home. You write, “I am a sick girl. I know sickness. I live with it. In some ways I keep myself sick.” When you finally received your diagnosis, did you feel like you’d found the sense of place that you were looking for?
It’s funny, I was really tempted to take out that line, “I keep myself sick.” That was the thought I had at one point — wow, of all my identifiers the one that seems like Americans can be most at peace with is maybe this one. Someone with chronic illness and disability — ironically Lyme disease being primarily associated with affluent white people in the Northeast where I was living. I can’t tell you that today I feel like, “Yay, I keep myself sick.” I feel really plagued. To me, I would do anything not to have this. There’s lots of statements that might seemingly contradict themselves in this book, but I feel like they’re the honest truth of the different stages and the complexity of Lyme, which is a constant up and down. It’s really complicated. “Sick” feels like a mystery, with readers wanting to discover when and where you contracted the disease and when you will be diagnosed.
When I started writing it I had a few jokes. One was that it was going to “Sex, Drugs and Lyme Disease,” and the other joke was that this is like a murder mystery because — luckily the thing hasn’t killed me yet — it was trying to figure out where it could have come from. All the doctors had different theories. I had different theories. All of them get really messy if you’ve had a lifetime of not feeling perfect. … For me this idea of digging and digging and spiraling felt true to the experience that I was having then; that I still have now.