Care

On Being 'Sick:' An Author's Road to Discovery

By Greg Mania

Iranian-American novelist, essayist, and academic Porochista Khakpour has felt displaced for the majority of her life in every sense of the word. After the revolution in Iran forced her family to seek political asylum in the United States, Khakpour's childhood in the suburbs of Los Angeles failed to conjure any notion of "home," nor did it offer any solace from the physical and mental disequilibrium she's felt for her whole life.

It's unclear, as she mentions in her memoir, Sick (Harper), out this week, when she was infected with Lyme disease, the tick-borne illness that has plagued the medical community with ambiguity for decades. An infectious disease specialist has tried to pinpoint when she was infected only to arrive at multiple plausible scenarios: it's just as possible she contracted Lyme during a childhood hike with her family in the Angeles Crest Mountains of Los Angeles as it could have been during a visit to the Hamptons in the late springs of 2005 and 2006, or during her time living in a small town in Pennsylvania, where she worked as a visiting professor at Bucknell University, or any of the other number of times she's been susceptible to getting bitten by a tick. Its myriad symptoms — or lack, thereof — vary depending on the individual, many of whom are able to beat the disease with a strict regimen of antibiotics. Others, like Khakpour, are not so fortunate, as she battles late-stage, CDC-level-recognized Lyme disease. But arriving at a concrete diagnosis, an answer for the fainting spells, tremors, and a slew of other physical and mental maladies — to be heard, and, more importantly, believed — was perhaps the most difficult (and costly) part in the effort to identify effective treatment and subsequent recovery.

Khakpour takes us on a road trip in Sick, quite literally, as the book's chapters are divided by geographical location. Through a burgeoning career as a novelist and academic, through navigating friendships and relationships, through battling with addiction, all while desperately seeking validation for the physical ailments she feels and suffers from while many, including doctors, dismiss as psychosomatic, Khakpour's unbridled vulnerability lifts the veil on the many misconceptions surrounding diagnosis and treatment, in addition to detailing the vast uncertainty that comes with living with chronic illness and finding treatment, and hope, in a flawed healthcare system.

Even as I write this, Khakpour is undergoing treatment in Sante Fe (a major backdrop of her book), where we corresponded via email. Thanks to support from crowdfunding, she's able to receive the care she needs, and was able to discuss her first memoir, in detail, with PAPER, below.

When I was four, my mother noticed a "bull's-eye" rash — the tell-tale sign that, more times than not, signifies infection — on my neck and took me to a doctor who dismissed it as nothing to worry about. Eventually, my parents were told that it was "most likely" Lyme. Do you think amplifying the conversation on Lyme will help alleviate some of the anxiety that comes with the lack of clarity surrounding it?

I am so sorry to hear that happened to you and I am also not surprised. I've heard thousands of these stories. It is so upsetting. Now, in 2018, I don't think there is much lack of clarity regarding Lyme. Any medical professional who feels unclear about it should not be trusted. It's a worldwide epidemic. Even the CDC is widening its once very narrow net where Lyme is concerned. So I guess I hope the conversation does alleviate some anxiety, but one adjacent to the one you speak of. And I hope it lets people — and people like you who were dismissed at a time when many dismissed it (and I do think every year it gets better!) — feel less alone in their struggle with it. And for the undiagnosed, the misdiagnosed, the diagnosed, the kinda-maybe diagnosed: none of it is easy. Anxiety is a very human natural response to all the ways our bodies, minds, society, etc. do us wrong. But I just hope what helped me — feeling less alone in it all — can help others.

Many describe their struggle with Lyme as "invisible." Has writing Sick, lifting that veil of invisibility through writing with unfettered vulnerability and intimacy, healed you in a way? If so, how?

My disease has varied in its visibility and invisibility. Some can see what I see sometimes: the rashes, the intense inflammation on my face, for example. (Lyme loves to mess with my neck, face, gums, and head, especially.) But yes, all in all, this disease is one that is often invisible. Most can't see my pain and I often can't see other's. The photo on the cover might portray some unease but I think many would look at that girl and think, "Oh, she looks fine." But I was as close to dying as you can get. I don't know if there was much healing when writing Sick; it was often quite traumatic to revisit so many hard moments of my life, all while trying to honor all of those involved as best as I could. But I do think now that people are reading and responding, I do feel a sense of healing. Writing is very lonely for me and sometimes you want people to say, "I see you, all of you, and I still love you." Sometimes that's what my readers feel like for me; their empathy has made me be able to walk through the world with a bit more light even when things were dark.

There was one line that stayed with me after I finished reading Sick: "I sometimes wonder if I would have been less sick if I had a home." Can you tell me more about the correlation between the physical displacement of the body and the feeling of displacement within the body?

Stability, in every sense of the word, helps most people. Feeling grounded. Routines. Some center, some anchor. I know that's not everyone. I used to love being unanchored and "free," or as my mom would call me, "a wild horse." But I am not sure that was honest. Or maybe I am just getting older and feel I can afford to be more honest or maybe my lens is just clearer. Who knows! I dream of settling down with a good partner. I used to want to wait until I was well but I hope they meet me now, in a Lyme relapse, rickety and unglamorous by society's norms. I hope my home is one I find in the midst of pain and illness and not in some imaginary empowerment-infused nirvana. (I sometimes think of today's empowerment rhetoric like a steroid! We pump up! Over and over, and then we deflate. Oops. Then what? What if we aren't always glowing and glittery and glamorous but just aching, grey, and murky — I think we deserved to be loved then, too, no? Maybe even more so!)

It seems to me that you were, in a way, being gaslit by so many medical professionals: you were constantly being told that what you were experiencing is psychological, and not a physical manifestation — that the catalyst for your dizziness, fatigue, nausea, convulsions, inability to swallow and myriad other symptoms were dismissed as "stress" or something of the like. What advice can you give to someone who feels like no one is listening?

I am back to experiencing many of those symptoms now and it amazes me how people still won't listen or still want me to be seen as some hysterical little girl. I am 40 and I have so much paperwork with so much misleading information. But, here's the thing: stress is real, and it can operate like any toxin. But what medical professionals who gaslight don't get is that they actually create the worse stress of all — and we get worse. And then they're like, "See, it's stress!" And then I'm like, you created it, you bozos! It is almost laughable if it wasn't so deadly. My advice to those who are subject to these atrocities — the major flaws of our medical world and frayed healthcare system that I feel can be traced to fundamental ills of heteropatriarchy and capitalism — is to keep believing in yourself. Keep pushing. Find advocates. Have them show up with you. Do not give up. Keep going. Know that you are loved and deserving of love — and please hang in there. I love all of these people in this category with all my heart and soul. If you want to talk strength, there is nothing more strong than these people who still persist in spite of turned backs from friends, family, doctors, the government. Let's give an extra dose of love to these great humans — I always wish I could do more for them and I will find a way to one day do it beyond a book. But I guess that's where I start.

As someone who suffers with a chronic illness, I know how scary the unknown is; how disconcerting all the unanswered questions can be. How did you begin to find hope when it seemed all hope was lost?

I didn't find that much hope. I still don't many days. But I was lucky — I found a medical team that understood me and heard me and loved me. And I found those friends, too. I have reached out, sometimes literally; in the worst pain I have begged strangers to simply hold my hand. They couldn't always take away my pain but they could believe me and love me in that way, and that gradually turned into some form of hope. Hope never comes easy for me, but I do have a strong will to live and I feel a lot of love for this earth and its inhabitants (well, most of them! Bigots can suck it!).

What reaction are you hoping to elicit with Sick?

I had no idea and I'm still unsure. I assumed it wouldn't get fancy prizes or high literary acclaim because I didn't write this book for those establishments, institutions, or any other big-wigs. I wrote it for sick people — the ill, disabled, addicts, those with some unease in body and mind, however they want to identify, and especially those like me who have complicated narratives and identifiers (at least according to dominant American culture). I didn't write to educate or illuminate; I wrote to warn, perhaps, but mostly I wanted people to feel less alone. I wrote the book that I think would have helped me. I don't need prescriptivity. It's hard for me to read self-help and other books of that nature. I often fall short or don't relate or can't fully go in on some of these ideologies, especially when they come from a culture that has not loved me and my culture — even as we loved them. I just need to commiserate, nothing deeper than, "Yeah, I've been there, and I hear you and see you." That was the goal if there was any, really. Strangers in pain wanted me to write this book and I did and I tried many strategies and this was the one I ended up with in the end, the one that I thought could be of best service.

I hear you have two books coming out in the not-too-distant future. Can tell us a bit more about your upcoming projects?

Yes! An essay collection called Brown Album and a new novel called Tehrangeles, both from the Knopf Doubleday family. I've been waiting to feel better to return to them but who knows, maybe returning to them will make me feel better! And then after that — after writing five books — I dream of retiring from writing. I say that all the time but who knows. If there's one thing I have learned from all these years is that there is no way to control your own narrative (a hard lesson for writers). So I am going to watch and see how it all turns out.

To purchase Sick, click here. Click here to see Porochista on tour.

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