It was Ms. Wilcox who taught me a lesson that I remember to this day. When I began to get anxious at school she’d say, “Just let it roll off your back, like water off a duck!”

  What I remember most about entering Sacred Heart was desperately wanting to belong, but feeling as though I didn’t. I was the shortest in my class, didn’t particularly like field hockey, and had dark hair. Three strikes and you’re out! I thought everyone was smarter than I was. I went through the first part of third grade with a fixed smile, pretending I understood what was going on and not saying a word when I got confused. It was around this time too that I wanted to cut off my legs after gym class because my joints hurt so much.

  I liked a few classes—drama and art were two of them. I also liked learning how to write in cursive. It was one of the only things that came easily to me. I would go home and practice it for hours, pretending I was a lady writing letters to my knight or prince.

  I discovered that I could keep the fact that I was having trouble in school a secret for only so long—due to things called “parent-teacher conferences.” After one such meeting, my parents took me to the Soifer Center for Learning and Child Development, in nearby White Plains, New York, where I was tested for a learning disability. I remember having to do memory games and put puzzles back together, neurological testing, three or four hours a day for entire week. I did that whole process twice. My nanny would drop me off at an office that smelled like coffee and was filled with toys and weird games. Here’s how I remember doing one of them:

  “Pick up the card and tell me what is missing from this picture,” the therapist said as she took a sip of milky coffee from the lipstick-stained Styrofoam cup.

  “The house has a chimney, windows, and a door, window panes, shingles… hmmm… Oh, I know what’s missing! Green shutters and pink geraniums in wrought-iron planters in front of the door!” That’s how every home in Greenwich, Connecticut, looked so I assumed that it was the norm for every house in the country.

  “Well, yes,” the therapist said, confused. “That is one way to see it. But look closer.”

  “You mean that it doesn’t have a doorknob or weather vane?” I asked.

  “Yes! A doorknob!” she said excitedly.

  I rolled my eyes. Duuuh. I knew it didn’t have a doorknob, but that was boring. I just thought that the test had to be more challenging than it was.

  Besides having a hard time catching on with the little tests, I also found sitting in the same chair for more than fifteen minutes, let alone four hours at a time, to be painful. My whole body hurt. I was shifting around in my seat so much they assumed I was hyperactive, but then I would become so exhausted I’d put my head on the desk. The center’s answer to this was to diagnose me with ADD and prescribe medication, which I refused to take. Granted, the rest of my family does have ADD and learning issues, so I was no different from them in that regard. I just had a pile of other issues on top of these that no one could put their finger on.

  The ironic part of the whole ordeal is that tests revealed a rather high IQ.

  High IQ or not, I just couldn’t read. I had difficulty concentrating and remembering what I had just read. I remember being really confused because I had learned to read fairly quickly in first and second grade. Something had changed. I didn’t understand why. I didn’t spend time questioning it, however—I was in third grade, for Christ’s sake! All I did was shrug and say to myself, Well, I used to be able to read and now I can’t. Guess I’m the dumb one in the class.

  My parents arranged for a tutor named Miss Brown, a tall, thin, waify woman, probably in her thirties, who was very kind and gentle. She taught me little tricks to do while I was sitting in class and unable to focus, like using index cards to guide me on the page when reading. She tried her hardest to make math and reading fun and creative for me.

  I was probably the only one in my class who had a home tutor, which wasn’t all that great for my self-esteem, but I was grateful to have her and, later, Jody Sitver, who while I was in middle school guided me every night through my challenging homework, designed for advanced high school students. In Greenwich even third graders, it seemed, were on a college track, and usually the colleges they were on track for were Harvard, Yale, or Princeton. I kid you not.

  Despite the fact that he’s dyslexic, my dad also tried to help me with my spelling homework. For instance, to spell the word finally he would say: “Finally: fin, as in fish, and Ally is your name: fin-ally.” He said I should remember fin because I’m a Pisces. It was a good system, I guess, except for its limitations.

  Between Dad’s help and the tutor’s, I did start to read a little better. When I got home after school, I would get a snack, visit my baby sister, Elizabeth, and read books like The Baby-Sitters Club and The Boxcar Children in her room while she played in her crib. It made me feel like a grown-up to be watching over her and reading. The stories enthralled me, and I felt content and happy lost in someone else’s world.

  Though my reading got better, not much else did. When the nanny would knock on my door saying, “Little Ally, morning-morning! Wakey-wakey!” in her giddy, bubbly northern Irish accent, I’d crawl into a ball and clutch the blanket. If I had been older and could have mustered up the energy, I would have tossed her out of my bedroom window.

  I’d fantasize that I could airlift my bed, with me still in it, right to my classroom and then, as an added attraction, completely understand what the teacher was saying.

  Instead, I’d pull the blanket over my head: Maybe no one would notice if I just stayed there and never came out. Maybe no one would notice that the teacher had to explain fractions to me again, and again, and again. Maybe no one would notice that I winced when I ran, or when I stood up after sitting for too long, or even when I was just standing for a period of time. Maybe no one would notice that my smile was a mask, that my vivacious personality was a ruse. Maybe no one would notice how much I hurt.

  When I stood after sitting for a while, I’d wince from the pain like Nonnie, my seventy-three-year-old grandmother. How could an eight-year-old have the knees of a grandmother? And the gray wool of my school uniform skirt felt like sandpaper against the backs of my thighs and knees.

  When I was around seven or eight my parents took me to Dr. Zimjhdmanashsnahdjks (that wasn’t really his name, but that’s how I remember it), a pediatrician. Dr. Zimjhdmanashsnahdjks was a bright gentleman, with two sons about my age. Though I have trouble remembering how to spell his name, I do clearly remember his telling me that he lectured his sons to always put their dirty clothes in the hamper RIGHT SIDE OUT! He said it like that, WITH EMPHASIS! Otherwise, he cautioned, they would come back to them folded inside out! I never quite understood why he was obsessed with this story, but he told it to me several times, and from then on, whenever I put my dirty clothes into my hamper or the washing machine, I always turned them RIGHT SIDE OUT!

  Though Dr. Zimjhdmanashsnahdjks knew an awful lot, he didn’t know squat about Lyme disease. He told my parents that I was experiencing a simple case of growing pains and probably strep throat. Of course! A bit more rest, stretching, and some hot pink liquid antibiotics that tasted like bubble gum were the solutions to all my problems!

  This was around 1995, and Lyme wasn’t exactly in the closet. It was out, and out in a big, media-covered way. People were concerned, and rightfully so. But the Lyme test on my tick had come back negative. What made a Lyme diagnosis even more remote for me was the fact that my mom didn’t remember any rash. Doctors didn’t know then that the red bull’s-eye rash comes up in only about 40 percent of the cases and that laboratory tests on ticks can produce false negative results.5 There was also the distinct possibility that the tick my mother took off me and had tested wasn’t the only one that had bitten me.

  So, for the next eight years I suffered through a maze of misdiagnosis, wrong medical treatments, and outright suspicion. The sore throats occurred on and off most of that time, the joint pain worsened, and my cognitive abilities declined.

  It wasn’t that I always felt bad, and that’s the diabolical aspect of Lyme. I had some really great days, feeling like “myself” and happy, energetic, and pain/worry free. But those moments only made me feel as though I was lying or exaggerating about feeling bad. Sometimes being a little dramatic helped get my mother’s attention. Unfortunately I wasn’t clever enough to realize that my mother chalked up the theatrical explanations of the constant pain to my overreacting about something. She was constantly telling me, “Buck up, and get on with it.”

  My frustration got so bad something had to break.

  It did. The “outbursts” that began on East Eightieth Street became worse and more frequent. I was angry, frustrated, and confused, and I felt disenfranchised. I believed people thought I was a liar and a fraud because no one could find out what was wrong with me. I felt as though no one was listening. My mom was my main target, and I made sure she heard me loud and clear. The outbursts came after Mom made me wear dorky clothes or kept me from going over to a friend’s house. I would completely flip out. It was as if a force came over me that I couldn’t control, as if a demon took over my being. It was scary, mostly for my parents.

  For me? Well, it felt amazing! As if I were being released from some kind of nice-girl prison and could express my pent-up frustration, let loose, scream, and throw things. I could say mean things and hate everyone around me. Afterward, however, I would be left alone hating myself with the thought that I was just a bad little girl.

  One of these outbursts came in fourth-grade math class. The homework assignment was sitting in my backpack, partly blank, partly scribbled on, and wrinkled. I had tried to finish the worksheet, had tried as hard as I could, but it was as if it were written in Chinese. My tutor hadn’t been there the night before and my parents were useless when it came to math, so I finally gave up and hoped that my teacher, Mrs. Nolan, would understand.

  When I arrived at school the next day, I knew I was doomed. I was the only one who hadn’t completed the homework. I’d been in this situation before—I was the girl in the math class who was always raising her hand and saying, “Could you explain that to me again?” It always made me feel less than everybody around me. So, in that way this day was no different, except it was.

  Mrs. Nolan was a young, happy, spritely woman and, for the most part, very kind, but she was also particular about things being done properly. My attempt at excusing myself from completing the assignment failed, and she sent me into the hallway. I felt like an idiot and a failure. My head was spinning with worry. How on earth was I going to advance from fourth grade? And if by some miracle I did, how would I ever be able pass the infamously tough Mr. O’Connell’s English class in fifth grade? Would I be able to keep up and learn new material? I’m not sure if the anxiety I was feeling came from frustration and confusion or was a symptom of Lyme disease. It might have been both.

  As if I wasn’t worrying enough, Mr. O’Connell picked that exact moment to walk by me in the hall. When Mrs. Nolan peeked outside to see if I had worked on the blank worksheet, I snapped. I began yelling at the top of my lungs, accusing her of being a mean and awful woman. I declared that I hated her. I was red with rage.

  I crumpled up the worksheet and threw it at her.

  I imagine a lot of little girls experience anger, often toward their mothers. But looking back, I can see that much of my anger came from trying to deal with an illness I didn’t even know I had. When I think back, I see this little human facing a world she just couldn’t figure out. Why was everything so hard? I knew I wasn’t stupid, and yet I felt as if I were. I knew I had pain in my knees, but everyone told me there was no reason for the pain. There’s an old expression, “Feelings aren’t facts.” But good luck telling that to a kid who’s eight or nine or ten years old. My feelings overwhelmed me until I snapped and checked out emotionally. I couldn’t exist in the reality of those moments—it was too painful. So part of me would leave.

  I don’t blame little Ally one bit. Sure, the people in the path of my wrath usually didn’t deserve it, and for that I’m sorry, but I am not at all sorry that the girl in the hallway with tears streaming down her face did what she had to do just to survive the emotional onslaught. The only thing that sucked was that I’d have to come back to reality, and when I did I was always disappointed. What’s going on? I would say to myself when I’d return from the blackout the outburst provided. It’s still like this? Aren’t you people listening? In the moment, when my anger was volcanic and spewed from me like hot lava, I didn’t even know why I was so angry and neither did anyone else. It was as if I were screaming from deep inside the volcano, What’s wrong with me?

  No one could hear me.

  My actions might have come across as bratty or outlandish, but the truth is that I was quite the opposite of that overall. My parents definitely spoiled us in some ways but we were taught to have compassion and respect for people.

  My parents also tried their very best to help me. They did everything to try to relieve the mysterious pain in my body. First it was weekly massages. Home massages were a luxury my parents were eager to provide; they had worked so hard to create a comfortable lifestyle for their family. Another luxury, and an unusual one for a ten-year-old girl, was visiting the chiropractor at least twice a week. Dr. Sharon Kaufman was as gentle as she was intelligent. I really loved talking to her because she took me seriously. I think she knew I was suffering from something other than what had been diagnosed, but she decided to focus on alleviating my pain. I think she knew that another blood test would probably not solve anything since I had had so many in the past years.

  At the time of the math outburst we were living in the Hyatt hotel, waiting to move into Denbigh Farm, an eighteenth-century manor house in Greenwich. Dad’s business was becoming successful beyond what anyone could have imagined—except Dad, because he always thought big. That day, when I arrived at the hotel my mother said she had gotten a call from the principal, who said I’d thrown something at my teacher. “Is that true?” she asked.

  I crawled up in a ball and held my head. “Mommy, I can’t understand math and she wanted me to do something I just couldn’t do and she wouldn’t help me. And I have to go into Mr. O’Connell’s class next year and I’m scared.”

  I was just honest.

  The rest of my memory about the incident and the time period surrounding it is pretty foggy. I remember watching Anne of Green Gables with Mom and seeing Showboat, a Broadway play. I remember too that Dad wasn’t around much. He did, however, manage to drive all of us children to school every morning. But that’s about all I remember from that time.

  five

  TO PEE OR NOT TO PEE

  “Testing for Lyme may be misleading, as false-negative rates are as high as 60 percent in the first 2 to 4 weeks of infection.”

  —NATIONAL INSTITUTES OF HEALTH

  Clothed in old-world preppy oxford shirts and khakis and wearing round, tortoise-shell horned-rimmed glasses and colorful bow ties, Mr. O’Connell seemed harmless enough, but it was his reputation, one whispered in the hallways, that made most students worry. “He is hard,” it was said, the term used in the most unflattering way. That he taught fifth-grade English, however, brought on a special amount of angst for me.

  Mr. O’Connell’s reputation was not exaggerated. He would give spelling pop quizzes on the most difficult words you could imagine: algorithm, photosynthesis, cryptic, rhododendron. Nobody could spell them. It was fifth grade, for God’s sake! The highest mark he gave me on one test was a 20, out of 100, and that’s only because he gave credit for spelling my name right.

  It wasn’t only his tests that made him difficult. If girls were fiddling around with their shoes under the desk, he would have them take them off and put them on the railing on top of the chalkboard. I will say this: As tough a teacher as he was, and as much as I struggled in his class, some of his lessons on grammar stay with me to this day. So thank you, Mr. O’Connell, and may your participles never dangle.

  In fifth grade, I had one set of friends from school and we became something of a clique: Courtney, Ana, Meryl, Kristin, Danielle, Alex, and Amanda. We did things together like shopping at the Gap, trying to sneak a look at Cosmopolitan magazine, painting our nails, listening to Mariah Carey, watching funny movies, making up dance sequences to music from the Spice Girls. The normal things twelve-year-olds of the day did together.

  There was also the fact that my father was now pretty famous. Tommy Hilfiger ads filled glossy magazines and Times Square billboards. It’s funny, though: I don’t remember being aware of his fame. My parents, especially my mom, made a concerted effort to keep me sheltered from it. It was in school that I learned he was a big deal, when other students began talking about him to me.

  A pattern began that would continue throughout my life: I didn’t know if people wanted to be my friend because they liked me, or they really thought I was weird but wanted to be my friend because my father was Tommy Hilfiger. There are a lot of twelve-year-olds with famous fathers, and I’m not saying that my experience was any more difficult than theirs. But when you add the mysterious symptoms I was starting to feel, and the emotional insecurity that came with them, a toxic mix began to form that would be hard for anyone to withstand, let alone a fifth grader. All I wanted to do was be normal because I felt so different.

  If Mr. O’Connell’s class was a bummer, the summer afterward almost made up for it because of one specific incident.

  In July I went with my best friend, Amanda, to Arcadia Camp for Girls, in southern Maine. One night we went to the boys’ camp across the lake for a dance (such a cliché) and I started dancing with a guy who was tall, dark, and handsome, at least for an eleven-year-old. He had eyes with little hoods on the top like Leonardo DiCaprio’s or Josh Hartnett’s. Anyway, he was much taller and I remember him leaning down in slow motion to kiss me. We made out for what felt like two hours, in front of everybody. Such a crush! I remember going back and telling Amanda, “I kissed a guy! Oh my God! Oh my God! I can’t believe it!”