Tell Us 5 Things About Your Book: The Many Costs and Confusions of Chronic Illness

Posted July 8, 2018 7:28 p.m. EDT

“It is unclear when I got the disease,” Porochista Khakpour writes in her new memoir, “Sick.” “Doctors have mostly pinpointed somewhere in the 2006 to 2009 range, but I’ve had doctors who think I’ve had it since childhood.” The ailment is late-stage Lyme disease, and Khakpour’s attempts to treat it have often left her exhausted and troubled, questioning both her fortitude and her sanity. In “Sick,” she recounts the ongoing physical, emotional and financial challenges she faces. Khakpour, the author of two novels (“Sons and Other Flammable Objects” and “The Last Illusion”), talks below about the difficulty of composing a memoir, the direct style in which she chose to write it and more.

This interview has been condensed and edited.

Q: When did you first get the idea to write this book?

A: I got the idea in 2011 and 2012, when people were writing to me after reading my Facebook posts, wanting some sort of guidance or help in their own illness journey. I had a lot of people with Lyme who were watching me suffer publicly. A lot of people who had read my other work asked: Why don’t you write about this? I never intended to write an illness memoir, or any full-length memoir. I never thought it would be appropriate for me. To be honest, I didn’t want to fall into it too deeply.

There were some people, and especially women of color, who seemed to need a voice in this area. I understood what they were talking about. There weren’t a lot of people like myself — a woman of color, a woman of Muslim culture, an Iranian — who had told this story. I could see how this could help others, and that got me started on it.

Q: What’s the most surprising thing you learned while writing it?

A: I’ve learned that you can write personal essays for years and years but nothing is harder than writing a book like this. Full-length memoir is one of the most challenging things, especially when you’re still living the story. At different times, I felt like I was out of it. When I first sold the book, I felt like I was in remission from Lyme. A few months later, I had a traumatic brain injury from a car accident — I was hit by an 18-wheeler driving home from work. It exacerbated my Lyme symptoms dramatically and made me very ill. It’s hard enough to write about yourself in this context, but it’s hard to pick up the pieces of your life and write them into a narrative when you’re also somewhat in pieces yourself.

Q: In what way is the book you wrote different from the book you set out to write?

A: I stripped back a lot of the research. Initially I thought I would be writing something very heavy with sociological, anthropological and cultural stuff to couch my account. I was very happy to be rid of that stuff and leave it to be my own account as plainly as possible.

I set out to write more influenced by a desire to have a happy ending, and have it read something like: You can get well, too! I wanted to write a book that would let people know that maybe it will get better. But in the process of writing it, I didn’t experience that. It was humbling in that sense. It’s magical thinking that you’ll write about something and then you won’t have to deal with it again. You’ll move past it and into a new chapter. But I don’t think that’s how trauma works. Trauma’s a big component of illness, of being diagnosed and being treated.

It ended up being a more intimate and honest book, and maybe a more spiraling and confusing book, a bit more raw. I’ve always thought of myself, in my fiction, as a stylist. Language has always been so important to me. This book is a really different instinct. I wanted to write something as direct as possible, without too many bells and whistles. I wanted it to be a slender book, and I wanted people who were compromised mentally — as I often was while writing it — to be able to pick it up and digest it without a lot of the interference that concern about art can bring with it.

Q: Who is a creative person (not a writer) who has influenced you and your work?

A: I’ve been fascinated by athletes. After my brain injury, I was obsessed with watching surf videos. It was the only thing that seemed calming to me. Tennis is one of the only sports I know anything about. Reading about people like Serena Williams or Roger Federer and how they approach things — hearing how they’ve dealt with the body and the mind — has been really inspiring to me. The way I teach writing, I talk about how the brain is our tool and it’s how we process things. Unlike athletes, we don’t have a separation there with our medium.

And with Lyme, there’s a whole constellation of celebrities who have gone through it. That can be inspiring — seeing them in their public profile struggling with something.

Q: Persuade someone to read “Sick” in 50 words or less.

A: Fairly everyone in America these days seems to have something that’s off, on a physical or mental level, at least in my age group. “Sick” isn’t going to offer them solutions, but it will let them know that they’re not crazy, and they’re not alone.

Additional Information:

‘Sick: A Memoir’

By Porochista Khakpour

258 pages. Harper Perennial. $15.99.