I recall every detail of what I ate on April 1, 1997. Okay, I’ve often described myself as a gustatory Rain Man for my obsessive recall of meals and menus, but this is different. When I think about that night, I am still there, as if it’s a snow globe I bought on vacation and keep on my desk as a conversation piece. I shake it, and I am transported—unfortunately, not to a time or place I ever want to visit again.
I remember coming home from high school to my home in the New York City suburbs, and getting to work creating a recipe that involved wrapping Merlot-braised beef tournedos and baby spinach in buttery layers of phyllo. The moment is perfectly clear, but not because of the dish’s ambition (that’s how, at 15, I cooked every day) or because it was especially delicious (I under-seasoned it).
After dinner, I went upstairs to work on a report on John Wilkes Booth but was so exhausted that I retired to bed around seven. I woke up at nine, stood up from the bed, and crumpled in a heap a step or two away. My mother was downstairs caring for our dog, who’d just had a double-knee replacement. She heard the clatter and thought, at first, that I was drunk on insufficiently reduced Merlot.
But the truth was, it was no April Fool’s joke. I couldn’t walk. And as we soon learned, I would not be able to again, on any kind of reliable basis, for the foreseeable future. She spent the following weeks carrying both me and the dog to our respective destinations every time we needed to relieve ourselves. Katie got better. I didn’t.
That spring would turn me into a tenth-grade dropout, though I didn’t know it yet. The summer, too, I spent mostly in bed, occasionally rising to work on a velvet painting of Divine I’d been picking at. My priorities, obviously, were always in place.
At the time, it didn’t occur to me, or my mom, that what was wracking my body was related to the severe joint pain and fatigue that my GP had told me, at age 12, was fibromyalgia. I’d learned to live with that, just as he’d told me I had to. But after visiting 23 doctors from April through October, most of whom said I was just a depressed teen girl who didn’t want to go to school, one, Bernard Raxlen, was smart enough to diagnose me with severe neuro-Lyme disease.
Especially in my compromised state, it was difficult for me to believe that a tick bite could wreak such havoc. The cruelest irony was that my pale skin and nerdy interests kept me inside most of the time, anyway. I traced my likely time of infection to an Outward Bound trip in sixth grade. Now I had very real evidence that my school shouldn’t have forced me outside.
A SPECT (single photon emission computed tomography) scan, which tracked blood flow to my brain, showed that mine was on par with that of an octogenarian with late-stage Alzheimer’s. The fact that I’d gotten a perfect score on my SAT II for writing a few weeks before was akin to a miracle, Dr. Raxlen said. I just thought it showed how easy the test was.
But by that time, I was failing rapidly. I remember lying in the school nurse’s office, after she’d found me passed out in a doorway. As I rested on her cot, waiting for my mom to bring me home and reading Candide, I felt my ability to process the letters on the page into words I could understand slip away with each line.
By the time Mom brought me to Dr. Raxlen’s office to have a PICC (peripherally inserted central catheter) line laced up a vein in my left arm to begin IV antibiotic treatment, I’d lost the ability to read and sit up on my own and sometimes forgot how to speak for a few hours at a time. Once I began my regular infusions, things only got worse, a phenomenon called a Jarisch-Herxheimer reaction, in which the patient experiences something like sepsis as the bacteria in her body (in my case, Lyme spirochetes) begin to die off.
At that point, all I could do with my hours passing in and out of consciousness was watch music videos. Even a half-hour sitcom was too complex for me to understand. But some part of my lizard brain chose to remember the meals. Struggling to give me three IVs a day, Mom, who has no sense of smell and was never a cook, sometimes just gave up and fed me Spaghetti-Os. I couldn’t keep them down. The sight of the cans still makes me think of the reversals that followed.
The headmaster of my school, who had been privately tutoring me in a great books curriculum instead of my regular studies before I got sick, sent along frozen, stuffed chicken breasts, which were easier for me to stomach. But finally, I settled on a single thing that I was able to enjoy: mushrooms en croute from a little gourmet store run by French master chef and James Beard Award winner Jean-Louis Gerin. I was little more than a vegetable, but I still had standards—and a taste for phyllo dough.
At the end of what would have been my junior year of high school, my mother moved me to Vermont to avoid re-infection (in 1997, it was believed that there were no deer ticks north of Rutland). I lost that dish and ended up eating a lot of peanut noodles with vegan chicken nuggets from a local health food store. It was what Mom could handle at first.
And the years dragged on. A few months before I should have graduated high school, a bout of bronchitis brought on seizures that would animate me into a painful St. Vitus Dance every day, sometimes more than once. I still couldn’t walk on my own, but Mom never let me use a wheelchair. She now says she didn’t want me to feel like she’d given up on me, so she carried me around, letting me use my own legs with her help.
The truth is, I had given up. When I turned 19, I asked her to help me kill myself if I wasn’t better by my 20th birthday. But there were enough little improvements that I didn’t go ahead with my plan that year. It would be 21 instead, I decided.
To improve my quality of life, Mom took to using cookbooks to make me meals I found a little more exciting. I would mark recipes with stickers torn from Lucky magazine, and she would make them. I grew particularly fond of a venison and plum stew from a British recipe collection. Finally, across nearly seven years of illness, even for me, the meals began to blur.
Today, as I look back, the meals in my life tied to triumph simply don’t live in my memory the way the tragic ones do. I can still taste the sticky, bright-yellow Lipton Sizzle & Stir rice mix Mom made for lunch the day the Twin Towers fell.
Unlike most Lymies, as sick as I was, I got well. When I was 22, a neurologist named Amiram Katz put me on an experimental six-month round of a blood product known as IVIG (intravenous immunoglobulin). The drug itself had torturous side effects, but in the end, I was tossed back into the world with a gap of more than six years, like a 22-year-old Rip Van Winkle.
I skipped from age 15 to 22, from living the life of an infirm octogenarian to, essentially, that of a teenager. I couldn’t drive and lacked a full education, but I began writing again—and cooking. The phyllo and Indian flavors gave way to my own creations using Vermont produce or the colorful tomatoes my mother grew in her garden. Restaurants in the Green Mountains left much to be desired compared to what I’d been eating in New York City before my illness, but I nevertheless made it my mission to sample the latest openings.
Soon, I found myself cast in a local play, my first paid job (or any kind of job, for that matter) since I took to bed. I had auditioned hoping that I would be able to rise to the occasion of getting back on stage, the place where I was most comfortable as a child actress. Straight away, I met a fellow actor whose love for his native Vermont made me want to live again, and I felt love for him that I didn’t know was possible.
Our life together was full of adventure, but wasn’t without tragedy. We didn’t want children, and cats filled the void. Sticky rice, in the form of Japanese food, always seemed to be the thing my partner and I ate when one of our beloved cats died. And when, after 12 years, he ended our relationship two months after I moved to Houston, my first meal after the trauma was a banh mi and chicken-and-waffles at Les Ba’get on Montrose that I’ll doubtless remember forever, even if I was too devastated to eat much of either.
Yes, thinking of those meals brings back traces of the pain, both physical and mental, I experienced during my hardest times. But I think my brain has decided to hold on to those memories so assiduously in order to prove that life goes on. Even when living seems unbearable, you still have to eat. And as long as those daily repasts require my attention, they may as well be good.