I just needed this guy to drop back down to earth. Or slightly above earth in my case, in another realm of playfulness and spirituality (or just plain old psychosis) that was my defense against the pain I was in on a daily basis. I wasn’t being silly because I was incapable of being serious. I was being silly because I was terrified. I was not sure what he was treating me for or what he thought was wrong with me.

  In my room at Silver Hill, I had my necessities: one tiny wooden Ganesh, a Hindu deity with an elephant head who removes obstacles, a book on infinity with the 8 symbol on the front, a deck of cards, a journal, a sketch pad, Chapstick, and a pack of Marlboro Lights. I didn’t care about showering or clothing or any of that superficial madness; yes, showering is superficial when you’re on lockdown. I was so tired of image and material things.

  On one of the first days at the hospital I had a flashback of a day that had certainly led up to my being in this place. I had been angry at my parents for not listening to me when I said I didn’t feel well; they seemed too preoccupied with work and money and making the house look good. I exploded and raged and screamed and cried, and I broke one of my mother’s favorite plates. (You can’t have a nervous breakdown without breaking expensive plates. Ask Edward Albee.)

  All eighty-five pounds of me was coming undone. For days I hadn’t been able to eat, shower, or sleep. I was convinced that bugs were crawling in my body. I could feel them eating at my organs, my stomach, and especially my brain. I wasn’t me anymore. I was a weakly projected image of myself on a wall, crying out for someone to help me and figure out what was wrong.

  Well, my dad did just that, but never in my wildest dreams did I think he would help me in the dramatic way he chose.

  Staring into the eyes of this doctor in his shiny suit made me feel crazier and more emotional. The colorful snowboarding hat only went so far. I realized no one was going to help me get out of here, no one was going to listen to what was really going on. No one was going to believe that I used the marijuana found in my blood to help me eat something without feeling as if I was going to vomit, and to help me sleep. No one was going to understand that this wasn’t the place that I needed to be.

  Except the one person who would. I’d had a vague dream of someone who had the power or authority to get me out of here and find the missing piece to my health puzzle. This person was the answer and the key to my ultimate freedom from it all.

  I had no idea I had to go through weeks of hellish existence in order to figure out who this phantom person was.

  two

  FASHION FAIRY TALE

  “Lyme is also destroying families, and the really sad thing is, a serious illness is when people need their families the most.”2

  —JORDON FISHER SMITH, NARRATOR AND SUBJECT OF THE AWARD-WINNING LYME DISEASE DOCUMENTARY UNDER OUR SKIN

  So how did I actually end up in a nuthouse? Well, to get the full answer you have to go back to the beginning. All life stories start with a set of parents. My dad grew up about as small-town as you can get. Two hundred and thirty miles northwest of Manhattan, Elmira, New York, has a population of thirty thousand on a good day—of which there aren’t many since a lot of the factories closed in the 1970s. My dad lived in a small house on 606 West Clinton Street with eight brothers and sisters. He was the second child, the oldest boy, and he didn’t have it easy. His father would get drunk and beat my dad with a belt. My grandfather’s name was Richard but they called him Hippo. Family lore has it that Hippo got the name when he was playing high school football. Small in stature, my grandfather had a ferocity that belied his size.

  My grandfather worked in a jewelry store, where he fixed and made watches and jewelry, and Virginia, my grandmother, whom we called Nonnie, was a nurse. Nonnie was a saint, a beloved figure in my family.

  From the moment he was able, my dad worked as hard as he could. He mowed lawns, shoveled snow, delivered newspapers, and worked nights in a gas station for $1.25 an hour, anything to put some cash in his pocket, or, as he says, “to buy a pair of sneakers.” He also helped his family financially.

  What defined my dad best back then was probably rock and roll. He grew up in the sixties and loved listening to the Who, the Rolling Stones, Crosby, Stills, Nash, & Young, Eric Clapton, and all the other now-“classic” rock bands.

  My father’s career in fashion began in the summer of 1969 when he was a senior in high school. He and a couple of friends went to Cape Cod, where Dad got a job in what he now calls a “boutique” but what was essentially a head shop that sold incense, T-shirts, and band posters. He loved his experience on the Cape. When he returned to Elmira he jumped into his Volkswagen Beetle and drove to New York City with $150 he’d saved from working nights in the gas station and bought twenty pairs of bell-bottom jeans on St. Marks Place, in Greenwich Village. Back home, he rented a basement space, painted it black, played the Who on his stereo, and sold the jeans along with fringed vests and other items. The hippie bell-bottom and fringed-vest attire hadn’t yet reached Elmira. He called his store People’s Place and it was enough of a hit that he soon opened another one in nearby Ithaca on the Cornell University campus.

  It was in the store in Ithaca that Susie Cirona, my mom, worked. She was fifteen when she started. The Cornell campus also played a roll in her father’s life. My grandfather, Jim Cirona, graduated from the university. The design gene on my mother’s side of the family came from her grandfather, who emigrated from Sicily and became a tailor in Little Italy in New York City. Mom remembers the coats he made for her and her siblings to wear to Mass on Sundays.

  My mother’s Greek grandmother lived in the house in which my mom grew up. As my mother remembers, her nana was a soft, humble, sweet and loving woman. She had supper with my mom and her four siblings every evening. I think my mother adopted her nana’s compassionate, soft, and loving ways. Mom’s affinity for nature began in her early childhood. She would collect caterpillars and put them in her baby doll carriage, and she cut fresh lilacs and put them in her room. Later she would spend the majority of her time in the woods and on her bicycle. Mom was shy as a child, at least with people she didn’t know well. She was devoted to her father, a kind, loving, and patient man. Her parents took her out of Catholic school and put her in the public school in the hope of opening her up. At home, however, she kept her brother and three sisters laughing. Once in the middle of a summer heat wave, she walked around the un-air-conditioned house dressed in layers and layers of winter clothing, cracking everyone up. Mom sewed many of her own clothes and, in fact, was accepted into the Fashion Institute of Technology in Manhattan because of a dress she made herself.

  My mother tells me that she began to work for my dad after his partner, who ran the Ithaca store, fired her. She hitchhiked all the way to Elmira, about forty miles, to complain and my dad gave her a job at his store. They started dating soon after.

  In 1979, my parents moved together to New York City to follow a dream of a life in fashion. Not too long before, People’s Place had gone bankrupt, an event my father calls “his master’s degree in business,” so my parents started with practically nothing. Mom and Dad didn’t have a lot of money then. They first lived in a tiny apartment on Thirty-First Street, on the same floor as a gay couple, which they thought was very hip and cutting edge back then, and a mysterious man and woman who seemed to never leave the apartment. At the time, my parents would scrounge up the money to travel to India to make their clothing designs. They returned from one trip to find the door of their mysterious neighbors’ apartment riddled with bullet holes. The FBI had raided the place. Apparently, the man was on their Most Wanted List.

  Despite their rough beginnings, neither of them lost faith. My mom has always had a very intense intuition and foresight, which fit perfectly with dad’s innate ability to sniff out liars and inauthentic people, a talent that, over the years, I’ve been able to hone myself. But he too had a clear vision of his future. My mom says she confronted him one day, years before his career began to take off, by asking what he wanted from his life. “I want to be as famous as Calvin Klein, Perry Ellis, and Ralph Lauren,” he said.

  Soon after, they moved to Ninth Street between First Avenue and Avenue A. It wasn’t much of an improvement. Though today it is a center of hipsters and college kids, the East Village back then was heroin central and about as dangerous a neighborhood you could find in Manhattan. My dad says he and my mom were in their punk phase. They hung out in places like CBGB’s, the birthplace of New York City’s punk rock music. They met Andy Warhol, and managed to dodge the drug deals and gunfire that were common occurrences in their neighborhood. They also went to Studio 54 and got into the famously selective club because of the way they dressed: Mom in a leopard coat and white sunglasses, and dad in a leather bomber jacket.

  Both of my parents had a number of stops and starts in their careers before anything clicked. Jordache jeans fired them both after a month, as did Bon Jour jeans. Like my dad, my mom has great taste and a lot of talent and when they both started designing their own collections, it looked as though my mom was going to be the more successful one.

  In New York, my dad had started a clothing line then called 20th Century Survival, which was doing pretty well. It sold at Macy’s, Saks Fifth Avenue, and Neiman Marcus. At the same time, my mother started her own women’s sportswear collection called O Tokyo and it was a massive hit, much bigger than my father’s collection. O Tokyo was in some of the city’s best stores, such as Henri Bendel and Bloomingdale’s.

  As it happened, my father and mother both had shows during the same Fashion Week and my mother’s collection received far more publicity. She was the It Girl, the new, exciting designer of her day. The guys involved in my father’s company said to him, “You might want to ask the wife to step aside a little. She’s getting all the attention.”

  My father would never do that. Instead he came up with a better idea: He got my mom pregnant with me. When my mom went to Tokyo to work on her collection for the last time she was several months into her pregnancy.

  I was born at New York University Medical Center on February 26, 1985. My dad remembers the event so clearly he can tell you what he was wearing: khaki pants, a baggy varsity cardigan sweater, blue and white button-down oxford shirt, and white K-Swiss sneakers.

  My mother’s memories of my coming into the world were far less superficial. Her hair had morphed into a disastrous mess of knots and her eyes were bloodshot from all of the screaming and swearing. Apparently the doctor had a golf game to get to and induced labor with so much Pitocin that the epidural didn’t even work. Explains why she waited five years to get pregnant again. Who could blame the poor woman?

  After I was born, my parents moved to Sixty-Eighth Street between Central Park West and Columbus Avenue. My dad tells me that the night they took me home I slept in a bassinette at the foot of their bed. He kept getting up and putting his finger under my nose to see if I was breathing because I slept so quietly. Years later, when our relationship wasn’t nearly as sedate, to say the least, I’m sure my dad yearned for that innocent time.

  My dad always said I was his lucky charm. In 1985, the year I was born, he opened the Tommy Hilfiger store on Columbus Avenue, was asked to design the Coca-Cola clothing line, and launched his first Tommy Hilfiger collection. In case you ever wondered why my father uses the number 85 on his clothing, now you know.

  In one sense, I came along at just the right moment, when the stars of the fashion universe were aligned in our favor. I was born into a fairy tale waiting to happen. It was a blessed beginning. If that little bug with eight legs hadn’t crawled its way into our lives, it might have been a life too good to be true.

  three

  “OFF TO SEE THE WIZARD…”

  “In children and adolescents, Lyme disease can also mimic specific or pervasive developmental delays, attention-deficit disorder (inattentive subtype), oppositional defiant disorder, mood disorders, obsessive-compulsive disorder (OCD), anorexia, Tourette’s syndrome, and pseudopsychotic disorders.”

  —RICHARD I. HOROWITZ, M.D.

  Maybe the worst part of any Lyme story is the What if? of it. Children ages three to fourteen are at the greatest risk of contracting the disease, and if they contract it, they are haunted and hunted by it for the rest of their lives. There was a time, however, when I couldn’t imagine my life being anything but pretty wonderful.

  When I was ten months old we moved from Manhattan to Greenwich, Connecticut. Our house on Round Hill Road was a colonial in the traditional sense except for the pink carpeting that covered the floors. I remember waking up early and curling up into a ball on that carpet in front of my parents’ bedroom door. I’d lie there, sucking my thumb, until they awoke.

  Here are some other fragmented memories I have from that time:

  When I was very young I had a nanny named Maggie, then a Polish nanny named Alice, who would make fairy crowns for me out of daisies and dandelions from the yard.

  My parents called me Bunny Bun.

  There was a little white wooden playhouse in the yard. It had green shutters, a shingled roof, and a little porch (we still have it!). I would always play house in it, pretending to cook and clean in the four-foot by six-foot building. We still have pictures of me sweeping the front porch. The song “In My Own Little Corner” from Rodgers and Hammerstein’s Cinderella always reminds me of being in that house.

  I began ballet classes and my teacher’s name was Mrs. Foote! I loved my ballet costume, a tutu, and I always wanted wear it. My mother says that in those days I “bounced with sunshine.”

  My bedroom had a white wrought-iron bed and a white wicker rocking chair. A seamstress named Rachel made custom clothing for my mother. Rachel would come to the house to go over fabrics and colors with my mother every season. Rachel gave me a stuffed dog I named Mutsy. After I was bitten by the tick, I would hold Mutsy between my knees to ease the pain in my joints so I could sleep.

  I’d spend hours coloring in a playroom off my bedroom. There my dad and I played a game we called Store. I had a vegetable stand with plastic veggies, and we would be the managers. And he would say, “Alexandria, Mrs. Jones just called and she would like three tomatoes and two cucumbers.” I put the plastic vegetables in a little bag. Then he’d say, “Mr. Roberts just called and he would like a pepper along with his oranges.” Dad would play with me for hours.

  We had a huge front yard and used to jump in the leaves together, play hide-and-seek in the woods, and ice-skate on the pond behind the house. Dad called me his Princess Alexandria. Clichéd, I know, but we really had such a special connection. It was as if we were soul mates in a past life meeting again in this one. Our closeness was powerful and very tangible.

  I was close with my mom, too, when I was little. Together we made meatballs and watched reruns of Gilligan’s Island, I Love Lucy, and I Dream of Jeannie. I watched Cinderella and The Wizard of Oz until the VHS tapes were creased and faded. I remember the baths we took together in her big bathtub. She would hold me after the bath and rock and sing to me. It was my favorite time with her.

  I didn’t, however, like the way mom dressed me! She’d have me wear smock dresses with Peter Pan collars, wool cardigans, and blazers. They might have been nice clothes, but to me they were just itchy and confining. The shoes I wore were so tight you had to button them with a special contraption that was like a hanger. I didn’t like them at all.

  I had one pair of shoes, though, that I wouldn’t take off my feet. They were little beaded, red velvet slippers that my father brought back from a business trip to Hong Kong. I think I even slept with them on, and I still have them. I wore the red slippers with blue cotton pants that my mother and I called “summer pants.” I wanted to wear the summer pants all the time and did until one day, when I was sitting on the ground and fire ants ate away at them. I was so upset. Of all my outfits, my least favorite was a turtleneck and corduroy overalls, which my mother dressed me in every time I was sick. To this day, if I put on a turtleneck or overalls I get this feeling I’m going to throw up or have explosive diarrhea.

  Around that time, my mom opened a children’s clothing store called Beauchamp Place, in Greenwich, with a woman named Nancy Seaman. My mom was always working at the store, which was becoming successful, and my dad had started making a name in business. Still, it wasn’t as though the money was rolling in. In fact, my parents now admit they were living far beyond their means. There was one time they had to borrow oil from Mr. Strain’s gas station on Round Hill Road to heat the house. By this time I guess we were trying to keep up with the Greenwich Joneses.

  My dad stayed close to his siblings and mother and they were always visiting. There were two attic bedrooms in the house on Round Hill Road. My aunt Ginny slept in one while she was at the Fashion Institute of Technology (the same school my mom attended for a semester) and my uncle Billy lived in the attic for a short while when he was in a band with my uncle Andy. I remember my mother dressing my uncles in Civil War costumes for one photo shoot.

  It was Uncle Andy who in 1994 was responsible for my father’s biggest break in his career. Andy lived in East Harlem and would listen to music in the clubs. It was there he met a rapper named Snoop Dogg. Andy offered Snoop some Tommy Hilfiger gear to wear for an appearance on Saturday Night Live. The night of the show, the rapper wore one of my father’s rugby shirts with Tommy emblazoned across the front. After that everything changed for all of us, but I didn’t realize it until many years later. My parents tried very hard to keep me sheltered from the attention my father began to receive. In school, kids began to say things like, “Oh, you must be really rich,” or “Your parents must be millionaires,” but as a child, I was truly naïve about it all.