Taking showers proved too painful for my muscles and skin, which were now throbbing and crawling with pain. The water pressure had to be that of a trickle because of my weak and sensitive muscles. Getting out of the shower and drying myself off with a towel, or putting on my daily dose of body moisturizer, was a task I dreaded greatly. It felt like I was severely bruised all over, and that someone had exfoliated my skin with sandpaper for one hour straight. I quickly took to air drying and not caring about having dry skin in the winter.

  To sum up this period of my life, I would have to say it went something like this: sleep, no sleep, torture, agony, boredom, frustration, different doctors, my loving and supporting friends, making art in the middle of the night, playing solitaire, sobriety meetings, keeping the cereal industry going with my thrice-daily consumption, and all the while, puffing away on Marlboro Lights and drinking Diet Coke.

  I had to stop working at my mom’s company. I felt like a four-year-old, and the menial tasks like sorting the swatches were overwhelming me. My brain was like a fog machine in a Steven Meisel shoot. Did I explain the brain fog? It feels like you have done about six bong hits consecutively and are trying to speak at a White House press conference.

  I don’t know how people work during a Herxheimer, or tolerate heavy antibiotics while fighting a disease. All I could do was lie in bed, or on a couch, or in a bathtub, or on a floor, or on a window seat, or in the backseat of a car, or… you get it, right? When friends would come to visit me it was like they were visiting John and Yoko during a bed-in, except I didn’t have a John. My brother Richard, who was living at my dad’s at the time, kept me company when he wasn’t in school and I beaded jewelry, cut and sewed old T-shirts, sketched, and did anything creative one can do from a bed. A few times I dragged myself into my art studio. There I used my brain fog as a way to trick myself into feeling stoned so I could access that creative “zone” and release myself onto a canvas.

  I hadn’t smoked a joint since I left Barrett House. Shander told me that pot wasn’t good for Lyme patients. “You need a powerful immune system that will fight for you,” she said. “The minute you give marijuana to your ranks you have very lazy soldiers. They don’t even know which way the war is.” Back before my diagnosis, the pot had helped with the nausea and made me feel less anxious, but I took her word for it and left it alone. In front of the canvas, I didn’t know what I was painting and I didn’t care. I wasn’t going to let anyone see the work. I just needed to do it so I knew I could.

  After three or four months of this, ahem.… Let me write that again in case you didn’t catch it the first time, after three or four months of herxing, I started to feel a little better. I was able to get out of bed for lengths of time and I could accomplish one or two things a day.

  By the fall of 2004, I started to feel more like myself. My dad had moved into an apartment on Mercer Street in SoHo and I spent at least half my time in the city with him. Courtney and I didn’t buy the school bus but we did clean out my father’s gym in his house in Connecticut and set up appointment-only trunk shows. We called our company All the Tea in China.

  One of the things about coming off months of herxing and starting to feel better is you have a surge of energy and a need to make up for all the time you lost in bed.

  I decided that I wanted to go to acting school and move toward the creative work that I’d always been passionate about. I applied to Stella Adler Studio of Acting, was accepted into the program, and found my own little apartment a block away from the studio. Courtney helped me move into it.

  I spent about a year studying at Stella Adler, met cool people, did fun acting scenes, and loved hanging out with weird theater people. The experience reminded me of Abby’s Song and that wonderful time in my life.

  After Stella Adler, I enrolled at HB Studios, where I continued my acting studies. Around that time, we bought an apartment in SoHo on Greenwich Street. I came down with the flu. The doormen and maintenance man took turns going to the deli to buy me Gatorade and ginger ale because I was too weak to get out of bed. I finally felt well enough to staple sarongs and scarves together and tacked them over the windows with thumbtacks to create temporary curtains.

  Right next to the apartment, however, was Don Hill’s, the club where Uncle Andy and Billy performed, and where we had Billy’s memorial. Don Hill himself was always sitting outside his club on a bar stool. A waify fellow with a long, gray ponytail, he was always dressed in denim and Native American jewelry. After I moved in next door, Uncle Andy told Don to look after me while I lived in the neighborhood. He did, too, but only from his perch on the bar stool.

  I’d started a tradition of having Sunday dinner at my apartment with friends and family and anyone else who was around. For me growing up, Sundays were always dull and dismal, so when I was on my own, I decided I was going to make it something to look forward to. The dinners usually consisted of eight or ten people from the various creative worlds I inhabited. I would cook my favorite meals; usually roasted chicken with tons of roasted vegetables, or a rosemary lamb roast. It was always a lot of fun. I’ve always been a good cook; it just comes naturally. I invited Don to come, more than once, but I think he was too shy.

  Years later, Don’s club would provide the setting for a big moment in my life.

  twenty-one

  DAD, LIGHT THE NAG CHAMPA

  “Undisturbed calmness of mind is attained by cultivating friendliness toward the happy, compassion for the unhappy, delight in the virtuous, and indifference toward the wicked.”

  —PATAÑJALI, THE YOGA SUTRAS OF PATAÑJALI

  Doctor number three.

  Back when I was fifteen years old and living with my dad on the Upper West Side, my loving father sought out a way to save both of us. He had no idea why his marriage had just ended and I had no idea why I had chronic joint pain. Through his efforts he hoped he would be spared a dark depression and turning into a vacuous playboy, and I would be rescued from chronic physical agony on a daily basis and also the sadness that comes with being the eldest child of divorcing parents.

  So how did he do it?

  He called Yoga Joe.

  Joe was an Ashtanga yogi who happened to be a Tommy Hilfiger fit model. A fit model is a guy or girl whose measurements are so precise that designers are able to fit the sizes of the clothes that they make according to this person’s body. Then you work up and down in inches from the size of the fit model to make the various sizes, which is called grading.

  Strikingly handsome, Joe looked like a version of Brad Pitt, but he was an odd fellow and when he spoke you had to wonder if he’d been doing yoga and meditating for too long. Joe really liked women. He really liked a lot of women. He never seemed able to control the inappropriate comment about rear ends, mine included. But he was a great teacher for us. He was truly dedicated to his yoga practice and very strict. My dad and I needed someone to keep us in line, because he and I tend to giggle and act immaturely.

  Sanskrit for “eight limbs,” Ashtanga is made up of eight components: Yama: moral codes; Niyama: self-purification and study; Asana: posture; Pranayama: breath control; Pratyahar: withdrawing of the mind from the senses; Dharana: concentration; Dhyana: deep meditation; and Samadhi: union with the object of meditation.

  Joe taught us every pose in the Ashtanga series and pushed us to improve upon every single one of them. No slacking under Yoga Joe’s watch.

  My dad would wake me up every morning at six o’clock with the Sting song “Fields of Gold” playing on the stereo. He had a pot of coffee brewing and the Nag Champa incense was lit. It was heaven. We drank a cup of coffee together and welcomed Yoga Joe into the apartment to start our practice at six thirty.

  We chanted at the beginning and the end of class. Another stick of incense was lit at the start of class and the smell of the Nag Champa, along with barrels of sweat drenching our mats and the feeling of the warm sun on my face while sitting on a yoga mat, is one of my strongest sense memories, as they would say in acting class.

  We became so consistent that I can do the sequence with my eyes closed to this day, although you are technically supposed to keep your eyes open the whole time, according to Yoga Joe.

  The yoga practice alleviated my joint pain significantly but certainly not permanently.

  It was around this time that I realized that managing my well-being was not an exact science. Sometimes it’s just unmanageable. You fall down. You eat things that will cause inflammation because they’re covered in frosting and look pretty. You go on a date and oversleep for yoga. You push yourself too hard at work and pay the price with exhaustion the next week. Though I didn’t know this then, Lyme recovery is not linear and Lyme sufferers are human. We make bad decisions or no decisions, which might delay recovery, but we must forgive ourselves and keep moving. I have learned that living with long-term Lyme disease, or any autoimmune illness, I suppose, means managing it through healthy diet, and sleep. A reduction of stress is key, too, but nearly impossible for most. I wish there was one thing I could do or take, not keeping a million balls in the air to feel well. It is a full-time job to stay healthy. Sometimes it is easy to just want to let loose and say, Fuck it, I am going to have a piece of pizza and a beer. Just know that the next day, you will have to suffer through the consequences.

  We’re never completely cured, but we find a life that’s manageable.

  By 2005, I’d exhausted all of the treatments that Dr. Phillips had me on, including tetracycline, an oral antibiotic. When I took that stuff, I had to avoid the sun, threw up a lot, had diarrhea, and the slightest task would leave me completely exhausted. I remember one day when I was on the tetracycline I nearly collapsed on the stairs. It was so scary. I felt lightheaded several times throughout the day, but when it happened as I was trying to walk to bed, I was very grateful I had a friend there to help me up and just sit with me on the stairs for a good thirty minutes.

  The tetracycline episode convinced me that I needed to try another approach and I went to Shander again to ask her to recommend another doctor.

  Please don’t get the wrong idea. I thought Dr. Phillips was an amazing doctor and he helped me a great deal; I was just so sick of being sick from the medicine. I would come to find out that most of the medical treatment for Lyme treatment is no picnic. Back then, however, I thought there must be an easier way.

  Though he hadn’t yet written Why Can’t I Get Better? Solving the Mystery of Lyme & Chronic Disease, his bestselling and seminal book, Dr. Richard Horowitz (doctor No. 3) was already one of the foremost Lyme experts in the country. It was nearly impossible to get an appointment with him. I thought I had better use my resources and have my dad make the appointment and accompany me. If there was one time in my life I was going to drop my own name, it was now.

  I knew I was going to like Dr. Horowitz as soon as I entered his waiting room. A very large space, it was filled with crystals and old statues of Buddhist and Hindu origin, a big aquarium, and nature magazines. I thought I’d found another kindred spirit, or a Hindu man or Tibetan monk I knew from a past life.

  Handsome, and with a scruffy salt-and-pepper beard, Horowitz proved to be pretty good in this life, too. He was funny, kind, open, and didn’t question any of the strange symptoms with which I walked into his office. He examined me and took down my medical history. Then he took my blood and reviewed my previous blood tests from Dr. Phillips, whom he knew. He didn’t need much convincing that Lyme disease and the babesia parasite, which is transmitted through the saliva of a tick when it bites a human, were the main culprits in my case.

  Where I really connected with him, though, was when we began talking about my interest in ancient forms of spirituality.

  It was during that conversation that he told me about the mantra that his guru gave him. Mantras are very private, and I knew that his telling it to me was both an honor and a matter of trust. “Please do not share this with anyone,” he said. He told me to chant it twice a day and promised that it would raise my immune system and benefit my overall health. He then asked me if I had some sort of altar or place where I could meditate.

  I did. An acquaintance of ours was a carpenter. While I was in high school and beginning my spiritual search, I worked with him to design a hand-carved alcove-altar in my dad’s house for my meditation. On it I placed my coral Buddha, my Ganesh, a big bronze Buddha my mother had given me, and other spiritual items. I burned sage to clear the energy, and it held a very special and important place for me. Oh, and of course I had Nag Champa incense constantly burning along with live flowers.

  After Horowitz gave me his chant, which was in Sanskrit, I would sit in front of my altar with the paper he’d written it on, reading it out loud over and over.

  Seeing Dr. Horowitz marked a turning point in my quest to cure my disease. He was brilliant in blending Eastern and Western disciplines to fight my Lyme. He was also the first Lyme-literate medical practitioner to prescribe a spiritual discipline along with medication. Yes, Dr. Shander was a big proponent of a spiritual path to well-being, but she was my psychiatrist and therapist. Dr. Horowitz was my Lyme doctor and it felt good to have someone treating me for my primary illness who believed that meds alone were not the answer to my problems. I would come to learn that the battle against Lyme is fought on three levels—physical, mental, and spiritual—and all three are equally important. Actually, I think the spiritual part is the most important.

  Here’s why the spiritual component matters: In chanting the mantra, I had this insight that my battle with Lyme was allowing me to see a thread that had been in my soul all my life. I began, in that moment, to see my true spiritual nature. I found that I am a very open and accepting human. I am grounded in the belief that positive energy attracts positive energy. I have come to find that when I follow my instinct it always leads me in the correct direction. It’s strange that a disease can do that but that’s what happened. I saw the beliefs, the familial love, art-making, creativity, and the desire to help others all coming together to reveal who I really am. In going within I found peace and strength. I found resolution within my own self. Tapping into this inner strength would be the answer for me. This is not a small thing.

  As I battled Lyme, I was becoming who I truly was, and that was the biggest step I took in defeating my illness.

  My time with Horowitz wasn’t all chants and insights, however. He gave me something called Mepron, a liquid medication given to a lot of AIDS patients as well as people who have contracted malaria. It looks like bright yellow street paint and tastes like sour bubble gum. It’s thick and repulsive and lumpy and it turns your tongue bright yellow. The aftertaste needs to be addressed by the scientific community! I used to wash it down with a glass of milk, Lactaid milk in my case. Mepron is not exactly a stroll on the beach. It has a lot of side effects, including mood swings, feeling speedy, and vision impairment.

  Dr. H. gave me several other medications as well. To be honest, I was a bit overwhelmed with the very precise routine in which these medications were to be consumed. A friend I’d met in a twelve-step meeting helped me make a schedule and thank God she did, or I would have been lost.

  With the meds, however, I knew another Herxheimer was on the horizon, and even though I knew I would feel better afterward, I was scared.

  It is tremendously difficult to endure the highs and lows of Lyme disease. I would feel better on antibiotics, live my life and work, then crash a couple of months later and have to go back on antibiotics and stay in bed for long periods of time. The number of Lyme relapses is impossible for me to count. I felt so disappointed in the world and myself when I began to feel the symptoms creep up again, and that’s what happened to me after I saw Horowitz for a while.

  It was easy to get frustrated and I did, not with Dr. Horowitz, but by having to take all the meds and then go through yet another reaction to the antibiotics. I wanted to be done, cured, and better. I didn’t want to have to fight all the time and the routine was tiring.

  Dr. Horowitz’s office was in Hyde Park, New York, which is halfway between New York City and Albany, and at least an hour and a half from Greenwich, even considering how I drive. A trip to the grocery store would leave me exhausted, never mind spending three hours in the car commuting to my doctor’s office once or twice a week. What’s more, his program was very intense, and my visits with him lasted a couple of hours. Perhaps it was too intense for me, or perhaps I was just looking for an excuse to stop going.

  I saw Dr. Horowitz for nine months, and during that time I took an enormous quantity of medicine. My father and I would walk out of the doctor’s office with barrels of antibiotics and herbs!

  As I got better, though, taking the whole day for a doctor’s appointment seemed even more inconvenient than all the meds I had to take. It was certainly inconvenient for Dad, who always came along despite his busy schedule. Eventually I heard about a Lyme doctor whose office was just down the street from my mom’s house. I decided to look into seeing him. Besides, thanks to Dr. Horowitz, I really started to feel pretty good.

  One of the most deceptive elements of Lyme disease, however, is that when you start to feel better you think it’s forever.