Sick - Porochista Khakpour

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may occur and retreatment may be required. There are no tests to prove that the organism is at any point eradicated or that the patient with chronic Lyme disease is “cured,” although one can test for inflammation and other markers. Each year, approximately thirty thousand cases of Lyme disease are reported to the CDC. Over the past sixty years, the number of new cases per decade has almost quadrupled; the number of outbreaks each year has more than tripled since 1980.

      I have Lyme, with “bands” (lines on a test that represent antibodies to different components of the bacteria) that afford it CDC-level recognition (bands 23 and 41). My main coinfection has been ehrlichia. Several doctors believe I also have babesia and bartonella due to certain symptoms, although my tests don’t always come out positive for them.

      Living with this disease has cost me more than $140,000 so far. Experts put the average cost of late-stage Lyme at somewhere around $20,000 to $200,000. The annual cost of Lyme disease in the United States is more than $1–$3 billion as of 2017.

      It is unclear when I got the disease. Doctors have mostly pinpointed somewhere in the 2006 to 2009 range, but I’ve had doctors who think I’ve had it since childhood. Although the disease and its complications—including addictions—have defined my life, it is unlikely I will ever know when I contracted it, just as it is unlikely I will ever be rid of it entirely.

       ON THE WRONG BODY

      I have never been comfortable in my own body. Rather, I’ve felt my whole life that I was born in the wrong body. A slight woman, femme in appearance, olive skin that has varied from dark to light, thick black curly hair, large eyes, hands and feet too big, of somewhat more than average height and somewhat less than average weight—I’ve tried my whole life to understand what it is that seems off to me. It’s deeper than gender and sexuality, more complicated than just surface appearances. Sometimes the dysmorphia I experience in my body feels purely psychological and other times it feels like something weirder. As a child, I thought of myself as a ghost, an essence at best who’d entered some incorrect form. As I grew older, I accepted it as “otherness,” a feature of Americanness even. But every room I walk into I still quickly assign myself to outsider status, though it seems not everyone can see this. Many have in fact called my looks conventional, normal, even “good.” I’ve accepted it while also feeling like I’ve deceived them.

      I’ve looked for answers from my first few years on this earth, early PTSD upon PTSD, marked by revolution and then war and then refugee years, a person without a home. Could that have caused it? Was displacement of the body literally causing a feeling of displacement in the body?

      Only decades later did I confront something that may have been there the whole time: illness, or some failure of the physical body due to something outside of me, that I did not create, that my parents did not create. Illness taught me that something was wrong, more wrong than being born or living in the wrong place. My body never felt at ease; it was perhaps battling something before I knew it was. It was trying to get me out of something I could not imagine.

      At some point, with chronic illness and disability, I grew to feel at home. My body was wrong, and through data, we could prove that.

      Because my illness at this stage has no cure, I can forever own this discomfort of the body. I can always say this was all a mistake. To find a home in my body is to tell a story that doesn’t exist. I am a foreigner, but in ways that go much deeper than I thought, under the epidermis and into the blood cells. I have started to consider that I will never be at home, perhaps not even in death.

       PROLOGUE

      It’s New Year’s Eve, about to turn 2016, and I’ve been where I always am: inside. A neighbor visits and drops off some leftover Christmas chocolate I can’t eat but gladly accept; a friend a few blocks away comes by with his toddler son and invites me to his home for a small party that we both know I can’t attend; friends all over the city send email and text invites to events “just in case.” I’ve never not been a party girl. This was my father’s greatest fear for me in the United States, but one that I balanced with what would become his greatest dream for me: being an author. A cross between Salman Rushdie and Paris Hilton, he used to joke.

      But I know that this New Year’s there will be no parties for me. This New Year’s will be my first spent alone.

      Twenty days before, I was in a car accident. Hit by a semi—an eighteen-wheeler tractor-trailer, to be precise—on the way home from my job, teaching at Bard College. Class was out by 1:10, but I stayed late that Friday, rare for me. It had been a season of hate crimes, a month and a half after the Paris attacks, and tensions were especially sky-high for brown and black students. I was the only faculty of color in our department that term and the students seemed to look to me for answers. I hid that I was as lost as them. I had packed extra snacks and all sorts of “reinforcements,” as I’d call the supplements that I’d been taking for years for Lyme disease relapses—from Celtic sea salt to magnesium to nuts to protein shake mixes to bee pollen and propolis. These reinforcements were meant to shore me up, so that I could stay a few extra hours and meet with all my students who seemed to have some sort of depression that season.

      I understood: so did I.

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      The first sign of a Lyme relapse is always psychiatric for me. First the thick burnt fog of melancholy that crept slowly—mornings when I couldn’t quite get out of bed, sticky inability to express my thoughts, hot pangs of fear and cold dread at unpredictable times, a foundation of anxiety, and panic—that fluorescent spiked thing, all energy gone bad, attacking like clockwork around noon daily—all unified toward that endless evil white, insomnia.

      Everything was again a danger, everywhere and everyone and every time.

      Days after I returned from a blissful but exhausting book festival in Indonesia that November, I began to consider that I might be having a Lyme relapse. At that point, I’d been healthy for years, so to relapse into bad health was a transition I couldn’t quite fathom. I tried to blame jet lag at first, the disappointment of leaving a wonderful place like Indonesia, the hectic schedule they had me on (three Indonesian cities, all spread apart, in ten days). I tried to think it might be the news I got upon return: that my editor was leaving publishing, and that maybe this very book would be in jeopardy. I tried to think it was the Paris attacks and the new wave of Islamophobia that had suddenly gone mainstream. I tried to think anything, everything else.

      I wasn’t going to lose myself again.

      After a Thanksgiving spent intentionally alone—I never liked people seeing me in an off-period—where the one event of my holiday was finally caving in to my doctor’s suggestions and buying a cane from the local CVS, I broke down and wrote my friends an email on November 28.

      dear some of my closest nyc friends who are in town currently or might be soon,

      i am getting more and more ill very fast. i’m scared at the moment. in case you don’t know, i’ve had a late stage lyme relapse but this one feels very intense. rapidly things are going downhill.

      i’m trying not to be extra alarming online—some important work stuff i want to be well enough for—while also letting people know some things are off.

      i have various lyme communities and that’s the way to reach them.

      but also i don’t want to drop out as last time i became completely disabled that way—i need to stay engaged

      but i’m scared.

      at points in the day i don’t know where i am exactly. at night it somewhat clears.

      i’ve been falling again a lot. etc. very faint, very dizzy. getting a cane.

      having trouble with reading and writing.

      it’s very reassuring to be around people when I’m confused. alone it is very hard.

      i’m not totally

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