Growing up, I loved all of my father’s family and continue to do so. Kathy, Susie, Betsy, Bobby, Billy, Dee Dee, Andy, and Ginny were my dad’s siblings, and they all played wonderful roles in my life. They were and still are great influencers. But my uncle Billy held a special place in my heart and I held a special place in his heart, too. He wrote a song for me and called it “Alexandria.” I still know all the words, but when I was little I’d be embarrassed when he’d sing it at a family gathering. Now when I think of that song and start to hum it, I cry.

  My parents loved to look at houses and go antiquing and they took me along. I only wanted to go in the car to visit Aunt Betsy and her sons, Mike and Joe, and Nonnie, of course. To me, the antiquing trips were the most boring things in the world. When we turned onto the Merritt Parkway I’d know where we were going and cry out from the backseat: “Oh no! Not the highway!”

  My dad drove an old sedan, navy blue, with caramel tan interior. I’d lie down on the backseat and count the little indentations in the leather. Most of the time I’d just fall asleep and when they returned home my parents would leave me napping in the car, parked in front of our house. I remember waking up horrified that I was alone. To this day it still freaks me out when I wake up alone from a nap.

  But in the car they’d play Joni Mitchell, Carole King, and Crosby, Stills, Nash & Young on the tape deck. It was on those trips that my love of rock and roll was born. I can still remember my favorite song at the time, “Our House,” by Crosby, Stills, Nash & Young.

  When I was little, we’d also go on vacation to Nantucket. We’d drive onto the beach, open the back of our old Range Rover and play the Rolling Stones and go fishing. My parents rented houses in Bridgehampton and Water Mill, New York, during a few summers. My only memory of vacationing on Long Island is behind the house we rented in Bridgehampton. There was a little hill of grass, with baby pines that reached my waist. My parents were trying to get me to stop sucking my thumb. I had a bar across my mouth the orthodontist had prescribed. But I’d go up to my little fortress among the pine trees and suck my thumb to my heart’s content. I did it so much I put a dent in the bar.

  My favorite vacation back then was visiting Nonnie and Betsy up in Elmira. The home on West Clinton Street was a small white wood Victorian with a little tower on the corner, which I called the castle tower. I used to go up into Nonnie’s attic and play dress-up with her old clothes. The backyard was about two hundred square feet and was filled with my grandpa Hippo’s rosebushes. Grandpa Hippo had a charming side and Nonnie loved him dearly. During the winter, Hippo brought the rosebushes inside, where they’d lie dormant in the laundry room in their basement. On the first Valentine’s Day after Hippo died in December 1990, when I was about five, Nonnie went down to the basement to flip the laundry. When she turned around to go upstairs she noticed a large red rose had bloomed on one of the bushes. In the dead of winter!

  Nonnie made us tomato sandwiches with salt and pepper and she always served Entenmann’s powdered donuts and Folger’s coffee. She sent us Gap pajamas every Christmas. Her sister, my father’s aunt Annie, lived nearby. Her house was surrounded by pussy willows that I loved to touch. Annie was very strict—she was the one who taught my father manners, which are impeccable. She’d say to him, “If you’re truly a well-mannered boy you’ll get far in life.” Her husband, Bill, had a buzz cut, and he was scared shitless of Annie.

  Aunt Annie could scare the living shit out of me, too. She’d say things like, “If you don’t be quiet I’m going to take a round out of your shorts!” She looked after us one summer when my parents went to Europe, and all I remember from that time is crying a lot. Annie had a stern face, curly reddish brown hair, dark maroon lipstick, and drawn-on eyebrows, which she taught me how to draw. She also taught me the trick of taking a bit of lipstick and putting it on the apples of your cheeks to give them a little color, and how to pull stockings up over your knees without getting snags in them.

  Like all the Hilfigers, Annie worked hard. She was a typist and secretary, and like the rest of my father’s family she also had a pretty good sense of humor. In the 1950s, Nonnie and Hippo had bridge night, with a foldout table, endless amounts of cigarettes, and cheap hors d’oeuvres. One night, one of the husbands from the other couples who joined the game put his hand on Aunt Annie’s knee under the table. She looked him right in the eye and said, “What’s the matter? Not happy at home?”

  On vacations to Elmira, I got to see my aunt Betsy and my cousins Mike and Joe, who were a few years older than I was. I remember being at the Piggly Wiggly market and climbing into the basket of a cart. Joe crawled into the space underneath the basket and Mike pushed us so fast down the aisle I peed on Joe’s head. I was laughing so hard I just peed. Mike had to take some paper towels off the shelf to dry his brother’s hair.

  The childhood vacation that had the biggest impact on my life, however, was one I don’t really remember—I was just nine months old. The destination was a small private island in the Caribbean called Mustique. By 1985, my parents had started making some money and vacationed in St. Barths, but when it became too crowded with New Yorkers, they searched for a more private and quiet Caribbean island to go to. They discovered Mustique and fell in love with it. They ended up buying a home called Pamplemousse (French for grapefruit) on L’Ansecoy Bay, which is on the north side of the island. The house was next to Mick Jagger’s and Bryan Adams’s homes, as it happened.

  I also fell in love with Mustique, and the island became an integral part of my life and life’s story. There’s magic in Mustique, maybe because it has a huge crystal vein running through it. Or maybe because it’s just that kind of special place. I consider the people who live, work, and own homes on Mustique as my extended family. My soul lives there with the crystals that grow wild out of the earth, the grape-seed leaves that flourish in the dunes of the beaches, and the bright yellow sea fans that sway to and fro in the clear Caribbean Sea. I was always a bit melancholy when we’d leave the island.

  In fact, when I was sixteen years old I decided not to leave.

  We were scheduled for a one o’clock hopper plane to leave the island with my grandfather and mom. Along with my friends Garrett and Danielle and my two younger siblings, I planned the scheme the night before. We’d hide on a little beach that I knew my mother and grandfather didn’t know about. The next day, we were there for hours giggling and playing in the sand and sea, without a care in the world, so proud of our cheeky adventure. My younger siblings were tempted to chicken out but they didn’t need too much convincing to stay that day.

  Back on our little hideaway beach, we were so pleased when the clock passed the one o’clock point. We did it! All of a sudden an old Land Cruiser pulled up. The driver was Mick Jagger’s then-companion Jerry Hall, who had been sent out with others to search for us. We grew up with the Jagger children, and our families have remained very close over the years. She found the five of us huddled up in the sand, trying to become invisible. She told us that my mom and grandfather were not happy. Oops! Then she drove us to the airport. We arrived there sandy, wet, and in our swimwear, all with our tails between our legs. They made us get on the plane that way. It was a long trip back, to say the least.

  My brother Richard’s birth on March 28, 1990, was a huge event for me (I’m sure it was for him, too). I had dolls as a child and when my mother was pregnant I practiced holding them like babies so I’d be ready when my brother arrived. When he did, I kept asking to hold him and I’d sit with him in the back of the car when he was taking his naps.

  I am the eldest of four. My brother Richard is five years younger, Elizabeth is eight years younger, and Kathleen is eleven years younger than I am. I thought they were my babies, and they treated me like their mom. I developed strong maternal instincts for all of my siblings.

  In 1990, when Richard was a couple of months old, we moved back to Manhattan. I was five. We lived in a townhouse on East Eightieth Street. I remember acting grown-up in taxis with my parents. I’d insist on telling the cabdriver our address and would emulate my mother: “One, two, three East Eightieth Street between Park and Lex,” I’d say. “That’s eight zero.” I also emulated the way my mother spells our last name to people over the telephone: “H-I-L-F as in Frank-I-G-E-R.” I still do it to this day.

  On Eightieth Street, Whoopi Goldberg was our neighbor. I don’t mean to name-drop, but you have to allow me a totally random Whoopi Goldberg story. A few years ago, I went to a show during Fashion Week and Whoopi was sitting a few seats away from me. I got the courage to introduce myself and say that I thought she was just awesome, that I admired her career, and so on. Whoopi then asked if I was Tommy’s daughter. I told her I was. “Oh my God,” she said. “Your father’s in my will.”

  Naturally I was interested as to why my father would be in Whoopi Goldberg’s will. Here’s the story she told me: Years before, she’d gone to the Sotheby’s auction for the Duke and Duchess of Windsor’s furniture. My parents were also there and they ended up bidding against Whoopi for a chaise longue. My father bought a large lot, which included the chaise, but somehow the chair was accidentally delivered to Whoopi’s house. “I put your dad in my will,” she told me, “because when I die I want the chaise longue to go back to him.”

  The townhouse we lived in had five floors. I remember zooming down the flights of stairs in a sleeping bag like a toboggan. We had rabbits, and we kept them in the downstairs kitchen when it was too cold for them outside.

  The top floor was a sunroom, with big glass windows facing the street and a glass-domed roof. I remember it had blue carpeting and tons of toys. There were two huge mirrors in the bathroom and when you looked in one mirror you could see yourself in the other, and that reflection would reflect in the other and on and on forever, it seemed. It was in that bathroom that I became aware of my physical self and was surprised by it. When I looked at all my reflections it was as if my brain opened up, expanded beyond reality. I felt as if I was outside myself with a thousand me’s. Today they might call it “meta reality.” I remember thinking I didn’t know who all those reflections were looking back at me. It really tripped me out. It was as though I was surprised I owned the human body I wore. I’d had to leave the bathroom and go play with something that would get me out of my head and back to the real world.

  The Ally I remember from the townhouse on East Eightieth was a little girl whose world was a stage, and she was the starlet ferociously taking charge of the role she felt she deserved. My father was like the producer of the play with his sweet, gentle, yet strong presence that made me feel as though everything was going to be okay. My mother, on the other hand, was the fed-up writer or director who just wanted to get on with the show. To this day, she feels that I have the temperament of the great actresses; she calls me a blend of Elizabeth Taylor, Bette Davis, Meryl Streep, and possibly Katharine Hepburn. I’m not sure if I can take that as a compliment 100 percent of the time, but I’ll take it when it is!

  My parents took me to see my first therapist when I was six. Mom and Dad wanted to do everything they could to offer as much support as possible as my father grew more successful. The office was on Christopher Street in Greenwich Village, and the lady therapist would let me put on her lipstick and play checkers with me. There was big dollhouse in the office, and I’d always put all the dolls in the same room instead of spreading them throughout the house. I wanted the family to be cozy together in one room.

  I was also enrolled in kindergarten at the Hewitt School at the time, though that experience is mostly lost. I do remember my kindergarten teachers’ names were Ms. Pearl and Ms. Nothumb, which strikes me now as hysterically funny since I was an addicted thumb sucker as a child. I remember too that we wore navy and green plaid jumpers and did gymnastics.

  I began my Catholic school career in first grade at the Convent of the Sacred Heart, on East Ninety-First Street. I wore a gray jumper with a red and white gingham pinafore. I was infatuated with the nuns and their getups. I asked one, an older nun, to take off the headpiece of her habit so I could see what was underneath. She did, and her hair was clipped up in all these multicolored plastic bow clips! Every morning we had to get in line and shake the headmistress’s hand and curtsey, right foot behind the left. I remember practicing my curtsey.

  It was while we were still living on East Eightieth that my life began to change. Random outbursts of rage occurred out of nowhere. I realize now that it was not long before that I had been bitten by that infected tick. I learned later that emotional outbursts are a common side effect from acute Lyme disease. Back then, however, Lyme wasn’t even a suspect.

  four

  SCARED HEART AND GROWING PAINS

  “The usual laboratory tests alone are not totally reliable to confirm or refute the diagnosis of Lyme disease. When we combine the current laboratory tests with a very thorough history, physical, and mental status exam, the accuracy of diagnosis is greatly increased.”

  —ROBERT BRANSFIELD, M.D.

  In the late 1970s scientists began wondering why a group of young hikers near the town of Lyme, Connecticut, had started developing mysterious symptoms like swollen joints, unusual rashes, and fevers. In fact, however, the illness had been brought to the attention of the medical community years earlier. A woman named Polly Murray, along with her whole family, had suffered from Lyme symptoms as far back as the 1960s. Her doctors diagnosed juvenile rheumatoid arthritis and some type of an obscure trauma, and they refused to believe it was anything else. The medical community literally brushed her aside.3

  Dissatisfied with their conclusions, she didn’t give up seeking a true diagnosis. In the 1970s, a doctor named Allen Steele figured out that a tick, which fed on deer prevalent in the area, carried this “new”4 disease. Polly Murray was vindicated, but far too many in the medical community still brush aside Lyme sufferers with chronic symptoms and ambiguous test results.

  Lyme is also far from “new.” Not too long ago scientists found a five-thousand-year-old guy frozen in a glacier who they believe had the disease. Research suggests that Lyme in America dates back before the whole Plymouth Rock get-together, and that Native Americans were rife with the disease. When the white-tail deer was hunted nearly to extinction, and forests were cleared for farming and settling, Lyme disease nearly disappeared. Nearly.

  Another theory of how tick-borne Lyme started doesn’t date back that far. According to this perspective, it was developed after World War II in a germ warfare laboratory on Plum Island, the government-run animal disease research center that has long been rumored to have secret purposes. According to the theory, the disease was loaded onto ticks to be used as little biological weapons but something went wrong with containment. Plum Island lies two miles off of the eastern tip of Long Island and about twelve or so miles south of the Connecticut coast, not too far from the towns of Lyme and Old Lyme. Twelve miles as the crow flies or, as one conspiracy theorist puts it, “as the wind blows.” National Geographic calls the Plum Island premise “compelling but controversial.”

  Just saying.

  It was a guy named Willy Burgdorfer, a medical entomologist, who discovered the bacteria in the deer tick that causes Lyme disease. He was actually looking for something else but when he split open the tick under the microscope, he saw a little squiggly thing that looked like a fusilli noodle. The fusilli is called a spirochete and the virus it contains is called Borrelia burgdorferi, which sounds to me like an Italian version of Bergdorf Goodman, but it is in the business of only misery and pain. What’s worse is it sells its wares from the shadows of confusion and misinformation.

  The tests for Lyme in early 1990 were far from perfect and, if you ask me, they’re just as archaic now. Accuracy in diagnosing and testing for Lyme disease has been one of the biggest challenges in the Lyme community to date. Being sick is bad enough, but being sick and not knowing why is insufferable.

  I was about seven or eight years old when I started feeling the effects of my mysterious ailment, and it was more than just emotional outbursts.

  On May 13, 1993, my sister Elizabeth was born, and around that time we moved back to Greenwich. My father’s business was starting to soar and I think my mother didn’t want us growing up too fast, becoming mini adults, which happens to many Manhattan kids. She has a wonderful maternal intuition when it comes to the well-being of her children, but even she couldn’t see that I was being misdiagnosed.

  We moved into an English Tudor on Mayfair Lane. On Sundays we went to St. Mary’s Church on Greenwich Avenue for Mass.

  Greenwich is perfect. It has to be: It’s in the town’s charter, I think. If you remember the movie The Stepford Wives you have a pretty good idea of what it was like to live in Greenwich. Everyone has their perfect houses, perfect fancy cars, and perfectly pretty children. The ideal Greenwich girl is tall and blond; excels at lacrosse, soccer, field hockey, or all three; wants to save the world; and is a wiz in math and English. Except for maybe wanting to save the world, I didn’t fit into any of the Greenwich categories. Neither did my family. We were more like the hippies who made good and moved in down the street.

  I was enrolled in the Connecticut chapter of the Convent of the Sacred Heart, which, like the one in Manhattan, is an all-girls Catholic prison… I mean school. My uncle Billy used to call it “Scared Heart”! My father drove me to school my first day and walked me into the building. Although I didn’t know what the word meant back then, I had an awful lot of anxiety that day. I’d barely slept the night before. I also remember gripping my father’s hand for dear life. When he let go, I began to wail. I’m not talking soft sniffles and drippy tears here, I mean full-out wailing.

  Dad stayed until I calmed down. He introduced me to the third-grade teacher, Ms. Wilcox, who was really nice and promised to stay by my side and that everything would be just fine. She seemed pretty and friendly and somewhat familiar, so I cautiously took her hand and entered the classroom.