Struggling with a Puzzling Illness, Then Living with Its Answer: A Conversation with Porochista Khakpour

I have had terrible depression for the past year, with only some brief breaks from it. Mostly we just need a lot of us out there on all ends, readers and writers and everything in between. I was never starry-eyed about this country and its politics. Although Sick is just making its way into the world, your next two books have already been announced: Brown Album (Vintage, 2019), your first collection of essays, and Tehrangeles (Pantheon, 2020), your third novel. Nominated for a 2016 Pushcart Prize, Kavita’s first book, Poignant Song: The Life and Music of Lakshmi Shankar (Harper Collins India, fall 2018), is a biography about the Grammy-nominated Hindustani singer, who played a pivotal role in bringing Indian music to the West. Can you share a little bit more about these in terms of themes, subject matter, and how these projects came about? It drives other people crazier than it does me these days. As a writer and as a patient, how do you reconcile with never knowing the answer to this critical question? I want bliss, I want relaxation, I want space to think and breathe and read and eat and walk and dance. I want this for everyone I love. But it was something I realized not once but twice (we had another set of IGeneX tests a couple years ago) that what’s wrong with me has a name. But we need to be all kinds and all sorts, the good, the bad, and the ugly, as they say. I think my work is just one piece of hopefully many. I always want to understand. But the desire and drive to get my body to survive just maybe can get my mind aboard too. I continue to need assistance — friends of mine are trying to set up a crowdfunding campaign for my treatment, as we speak. I still struggle with it sometimes. Yet, where you contracted Lyme disease remains a mystery. I just turned 40 and I want to commit myself to finding paradise on this planet. And for a while it helps, but at a certain point — where my PTSD and OCD intersect — it actually hurts. — used to say you could get when you are dead. More is finally being written and said about how women’s health issues and women’s pain are not taken as seriously by the medical establishment. As you cycled through waves of puzzling symptoms, and sought all manner of traditional and alternative treatments, in a scene from Sick, an acupuncturist referred to your illness as a “dragon that sometimes slept and sometimes woke.” You asked her, “But what is it?” and she replied, “Does it need a name?” For a writer, understanding why something happens, the cause and the effect, is critical, so to what extent were you motivated in your quest to understand and name your illness versus to just get relief or a cure? And what about the publishing industry’s interest in stories and books about these issues? 
I was told from the get-go that no one would care about a Lyme book. I hope others will join me. That panel proved to be prescient of the long-overdue #MeToo movement, which has been peeling back the veils of sexual abuse and predatory behavior at every level of our culture, including the literary realm. 
While Khakpour is best known for her two lauded novels, Sons and Other Flammable Objects and The Last Illusion, I especially love her incisive essays on culture and identity issues. I think publishing and the medical establishment are finally inching toward the right track with this all, but they need to keep moving forward. I was never interested in writing a memoir — becoming an essayist even came out of years of fiction. It just doesn’t have a cure. I guess I am not that edgy anymore, and I thank the edge for letting me find beauty in the darkness too, but I’m seeking the light. One of my big problems was I could not find any narratives about my illness from the perspective of women of color and I really needed that at several points. Learning how to balance these in my real life is key. I am big into self-preservation and I refuse to die for my art. And all readers? 
I hope women of color feel okay taking up space in not just the world but in narratives of the world too. I’ve joked that these are my final books on topics about the Iranian-American experience and then I can be done with them forever! Lyme has also killed my impulses toward addiction at this stage. But they are not good conditions for living either, and more and more, I want to think of the two together. Or at least for me, those are not good conditions for writing. I dream of rest and peace, which I guess some people — including the old me! I believe in survival, mine and those I love, and this thought keeps me very centered. JUNE 13, 2018

I FIRST MET Porochista Khakpour in October 2016 when we were part of a Center for Fiction panel entitled Sexism in the Literary World. Because that’s another way we are allowed to exist, through pulchritude. When you received your first diagnosis of Lyme disease, you seemed relatively unalarmed because, “how much harm could a bug bite cause?” But years later when this diagnosis was confirmed, you described that moment as “monumental to hear it: an ending to my story, a beginning to another.” Can you talk about your own mental journey to seeking, avoiding, and finally accepting and perhaps even finding a measure of closure in your diagnosis after so many years? All my favorite creative people in history could not make ends meet. My brain never stops. I wasn’t surprised when she came to the defense of fellow writer Sadia Shepard, whom Francine Prose had falsely accused of plagiarizing a Mavis Gallant story, despite the fact that Shepard had acknowledged that her story, “Foreign-Returned,” was an homage to Gallant’s “The Ice Wagon Going Down the Street.” Established writers like Khakpour and emerging writers like myself spoke out on the issue, and writer Gina Apostol dissected and deflated Prose’s accusations against Shepard in her piece for the Los Angeles Review of Books, “Francine Prose’s Problem.”
Khakpour also earnestly shares her experiences of complications from advanced stage Lyme disease and other challenges through her social media presence. I do everything much slower. Throughout Sick you describe some of the debilitating symptoms of Lyme, from insomnia, to heart racing, to panic, and how this impeded your ability to write or even to read. None of this hell is surprising to me. Even as a published author and teacher, you’ve had to crowdfund some of your treatment and recovery. I am thrilled that the Knopf Doubleday Group wants to put out my essays — including a longer title essay of the collection — and I am so happy this third novel I’ve been working on since 2011 will finally see the light of day. When it comes to drug addiction, in Sick, you write, “drugs make holes so they can fill them for you later.” Throughout the memoir, you chronicle your long struggle with mental health medications, which sometimes offered temporary relief from being unwell, but with the conditional strings of addiction. I try to think of this when I help others. For years, I agonized over this — where did that tick that I never saw come from — but these days, I focus more on the future, as in, when will I actually get rid of its effects, if ever? Given Khakpour’s gifts as a writer and her candor about her health struggles, an issue to which I relate, I’ve eagerly anticipated her upcoming memoir, Sick, and I’m glad to have had the opportunity to talk with her about it. Many caused me more harm than, say, “street drugs.” It is very hard to write well when you are under the spell of a substance that you know, at least on some level, is killing you. As someone who worked in the social change sector for several years, I appreciate how outspoken Khakpour is on social issues and the question of inequity. I hope I can one day, but I have so many obstacles against me — all my identifiers, for example. While your identity as an Iranian-American woman writer comes through in various ways in your fiction and nonfiction writing, how have recent events like the 2016 election and the #MeToo movement influenced your writing or how you interact with the world as a writer? 
It has brought me back to activism through Lyme disease online activism, mainly. Activism, an old home of mine, has allowed me some outlet. For the past three years I taught at the Lyme capital of the United States, the Hudson Valley. This desire to make meaning of things is both a gift and my worst enemy. I don’t know, I can’t have shame about this. I knew no other way to approach it than with honesty, so I went there, all the way. But it’s a massive epidemic all over the world right now — not just the United States, and not just the East Coast of the United States, as people used to think. Your family escaped from Iran and your parents imagined a better life in the United States, one that included good health and more wealth. What would you like to see change in terms of the medical establishment’s attitude and treatment when it comes to women’s and people of color’s health issues and Lyme disease? To be honest, it has all just gutted me and made me nearly hopeless. In so many ways, I wish we did not have to fight for things constantly. I don’t know any other way we can survive this world if we want to make art — and more and more every day I do think art is essential if we want to survive as a civilization. We need more narratives and by all sorts of people. Occasionally my brain still wants to say, “What if it is something else?” There is no perfect closure, I’ve found. In addition, your situation was compounded by the fact that Lyme disease and its broad range of symptoms are, at best, not understood and, at worst, viewed with suspicion by many in the medical establishment. However, I do think these traits, plus my stubbornness and rebellious streak, get me to better health, ultimately. Earlier this year, following a piece I wrote about being born with a cleft palate and my own fraught health journey, Khakpour and I reconnected about our shared experiences as women of color seeking answers to complex health issues. But have there been any lessons from your journey toward and with Lyme disease that you apply to your writing or writing life? ¤
KAVITA DAS: After writing two acclaimed novels, what motivated you to turn your pen on yourself, especially to chronicle some of your most vulnerable circumstances — struggles with addiction, struggles with a mysterious illness, intimate relationships, and family issues? I have come to peace with it, especially as there is a chance I have been infected more than once. I have survived thanks to the generosity of others more than anything else. Similarly, as a writer, understanding the impact of setting on the narrative, on the character, is crucial. A writer relies so much on their imagination, their focus, so what was it like to struggle to push forward on writing and publishing while also dealing with this struggle? ¤
Banner Image by Erich Ferdinand. What are your views on how wealth and health are tied together in the United States, especially for artists? But now I want rest and peace in life. Then you became mysteriously sick, going in and out of hospitals, seeking diagnosis and treatment, which proved incredibly expensive and exhausting. I really am excited to see where my brain will go next when I have a completely blank slate. Oh, it was crazy! ¤
Kavita Das worked in social change for 15 years on issues ranging from homelessness, to public health disparities, to racial justice, and now focuses on writing about culture, race, feminism, social change, and their intersections. I don’t want to sound like I’m against anti-psychiatric meds — I do think they help many and I am open to them helping me in the future — but for me, someone with addiction and dependence in my circuitry, a lot of them caused me a lot of harm and it was important that I name them here. What do you hope women of color readers take away from Sick? Even if they aren’t so pretty, like mine — maybe especially when they are not pretty. A good thing for me. There is no other way to write a memoir of illness and addiction, without vulnerability. For years when I reached out on social media for help or to simply share my story (around 2011) people would write me and ask me to write more about my experience with Lyme disease. Conversely, are there practices you have, as a writer, that you believe help you navigate your life with Lyme disease? At the end of your acknowledgments, you especially thank “women of color who told me they needed this narrative for more reasons than one.” As a woman of color who struggled with not-straightforward health issues and complications, I definitely related to the additional burden my identity sometimes brought into my interactions with the medical establishment, even though I had the seeming benefit of two physician parents. We need us to be represented in life and art. POROCHISTA KHAKPOUR: It was really others who convinced me to do this. Support is key — and not just financial but psychological as well. We need our narratives. Kavita is also at work on a collection of personal essays.