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For my daughter, Harley. The hope of you was the reason to keep fighting. You are the light of my life.
I remember it clearly: holding my baby girl Ally in the cab heading home from New York University Medical Center, where she was born, and freaking out every time the taxi hit a bump. I knew then that I would do anything to keep this child from harm.
As a young child, Ally was the most vivacious, outgoing, and fun little girl. Wed play outside in the leaves in the backyard or go hiking in the woods or collect seashells on the beach.
She was an incredibly social child, and would talk to anyone, especially those we would encounter on our travels, be it a cabdriver or a prince. I come from a big family, with eight brothers and sisters, and Ally fit right in. She carries the torch of the big love and big personalities of my clan.
She was also an old soul as a child. We would have long conversations about life, which she understood from a sophisticated angle from a very young age. I was pleasantly surprised every time I had a conversation with her. Shed ask the most intelligent questions and many times know the answer before she asked itshe would ask a question as a confirmation.
For a time, I was convinced she was going to be an actress on Broadway or in movies. She has a great singing voice, and is a gifted mimic. I think she got her social nature and talent for impersonations from me (I always wanted to be an actor), but she is incredibly creative, and has always had a great sense of style, which, along with her talent as an artist, she got from her mom, Susie.
There is an old saying that you are only as happy as your children, and when I began to see my daughter in pain I was in pain. From the time she was ten or so, we went to doctor after doctor and yet couldnt find out what was wrong. It was difficult to endure. I wished it were happening to me instead of my sweet, little girl. I wanted to believe that at some point we would find a cure or a way to help her heal from the pain that seem to get worse, but instead the medical community continued to misdiagnose my daughter. I felt helpless and, to be honest, even hopeless at times.
For Ally things went from bad to worse. In her late teens, she experienced a psychotic episode that lasted for several days. Leading up to it, I knew she was not herself. I also knew her self-medicating had gotten out of control, but what I didnt realize was that she had a disease that was spreading and that it had multiplied and crossed the blood-brain barrier, which caused a reaction in her that was similar to the way syphilis can cause psychosis. I tried to convince her to go to a rehabilitation hospital, but, as could be expected, she wouldnt hear it. I thought she might have been on psychedelic drugs, but she insisted she wasnt. So I decided that out of love for my daughter, I was going to have to use force. Two of my security guards helped me put her into a car to bring her to the emergency room and eventually Silver Hill Hospital, a psychiatric and addiction rehabilitation facility in Connecticut.
During that dark time, I knew Ally was very angry at me. I can still see the look on my daughters face when she thought Id turned on her when she needed me most. One of the reasons I was so distraught and acted so dramatically is that I was quite aware of the teenage suicide rate and that thought haunted me; it was always in the back of my mind. If something like that were to happen I could never forgive myself.
So, I thought I had to save her life, and I was going to do whatever I had to do, and however I had to do it. Believe me, this was traumatic for all of us. I never gave up hope, however, that she would eventually see that love was my primary motivation.
As a father, there is nothing more devastating than seeing your child suffer and go through intense pain, except, perhaps, seeing her suffer and not knowing why. Silver Hill Hospital turned out to be a godsend. It was there that Ally would meet Dr. Ellyn Shander, who would properly diagnose her for the first time. Thank God for Dr. Shander.
Finding out what had been causing Allys physical and emotional pain was a relief, but it proved to be only the beginning of a journey that never seems to end. No matter how dormant her disease seemed, we lived in constant fear and worry that at any minute it would raise its ugly head. And it did, over and over again.
This disease is an uncontrolled, widespread epidemic, and what makes things even more difficult is that a lot of people dont know they have it. Theyre living with all sorts of ailments and dont realize whats causing themand the longer it sits in your body, the worse it gets. With Lyme, there is no real, certain cure.
When I now see Ally holding my healthy, happy granddaughter, Harley, I know that she feels the same way I did when I held her for the first time in a cab. Im incredibly proud of my daughter, for all she has withstood, all she has accomplished, and for the loving, giving person she is.
This book is testament of her giving nature, a gift of hope for those who suffer from Lyme disease and to anyone who has ever overcome a challenge, whatever it may be.
Tommy Hilfiger
I dont remember when I was bit. It might have been in the summer of 1991 or 92. My mother does, but shes not sure where it happened. It couldve been on Nantucket, or in Bridgehampton, New York, or even in our yard in Greenwich, Connecticut, she thinks. Though she doesnt remember where it happened, she does remember finding the minuscule black creature with eight legs on my tummy, right next to my funny-shaped birthmark. Mom remembers too that she did exactly what the pediatricians were telling mothers to do: She pulled the tick off of me with sterile tweezers, put it in a test tube, and brought it to have it tested. The tests came back inconclusive but leaned more toward the negative side of the spectrum. My parents were dissatisfied with inconclusive results and decided to seek out a specialist. Unfortunately they were not given any hope or a list of symptoms to look out for. My mother is still very perplexed by the way the specialist handled the situation.