T
he f ir s t question I like to ask anyone who makes a living doing what they love, is how they initially became inspired by their profession. And in the time I spent getting to know Trinity Hamilton (in our e-mail exchanges and phone conversations, and my subsequent research of her, her work, and her disease), her answer to that question is by far the most profound thing she said to me. But more on that later.
Photo by John Skalicky
THE DREAM Trinity Hamilton became a dancer by mistake. Or, more accurately, by coincidence. When she was four, her dancing in front of babysitters and family members led her mother to enroll her in a ballet studio. By nine, it was an ongoing joke within the family that Trinity was going to skip college and be a professional ballerina. By 16, she was dancing six days a week and competing regularly. “From that very early age, I was fascinated by dance,” Trinity said. “I never wanted to be a cheerleader, or hang out with friends after school – it was all about the dancing.” By her senior year of high school, Trinity had a contract to attend BalletMet in Columbus, Ohio, which she ultimately turned down as the result of a debilitating back injury. A few years later, she was a dancer with Joffrey Ballet in Chicago, which The New York Times has described as one of the top three ballet companies in America. Joffrey was everything she had hoped. She was “eating, sleeping, and living dance;” carrying out the dream that she had set for herself as a young girl. But in 2000, her childhood Trinity Hamilton, age 6 bouts of exhaustion (which she and her family had always written off as fatigue from dancing and going to school full time) were catching up with her. Whenever the dancers were given a short break, you could often find Trinity asleep in a corner somewhere. She began falling asleep on the train to work and on the train going back home, often waking up in seedy areas of Chicago. She began to speak incoherently, unaware of what she was saying, and hallucinating regularly. Finally, her ballet master suggested she see a doctor, and when she was 20 years old, Trinity was diagnosed with Narcolepsy. THE DISEASE “Myself and the specialists I work with actually don’t know when I started getting narcoleptic symptoms,” she said. “Because looking back, my parents and I realize that sleeping had been an ongoing struggle of mine for quite some time.” The medication Trinity was prescribed “helped her get through the day,” but two years later, she started feeling symptoms of cataplexy, an affliction often associated with
Narcolepsy in which patients suffer chance bouts of muscle loss and/or weakness. These attacks, while usually brought on by strong emotions, occur at random and have proven to be fatal. “I didn’t even know what cataplexy was,” Trinity said. “I was diagnosed, and soon prescribed medication. It helped, but I was always so afraid of falling on stage. And with that fear came doubt and lack of confidence. That’s when things started to get really bad for me.”
THE DOWNFALL In the years after being diagnosed with cataplexy, Trinity said she began losing everything – confidence, the ability to stay awake during rehearsals, control over her limbs and movements – everything. In 2004, she left the stage and moved to Florida to be closer to her parents. She attempted to remain active within the dancing community, teaching and choreographing at schools, and even acting as the ballet director and resident choreographer for the New Tampa Dance Theater. But when she was alone, a perfect storm of pity, self doubt and regret boiled inside her. She gained weight, left the house less and less, and became stuck in her own depression. “I was at the lowest of my lows,” she said. “I remember looking in the mirror and not seeing a dancer anymore. I had no idea what I was doing with my future. It was a very scary time for me.” In the midst of her depression, Trinity crossed paths with a “phenomenal and remarkably patient” individual named Dr. Neil Feldman, who currently serves as the Medical Director of the St. Petersburg Sleep Disorders Center in St. Petersburg, Florida. Dr. Feldman understood. He listened. He offered Trinity medical advice in the form of Xyrem, a common medication prescribed for Narcolepsy. Trinity was opposed to the idea of going on Xyrem. She feared the lifestyle change, and the drug’s potential side effects. After years of patiently attempting to convince Trinity that Xyrem was her best option, Feldman set up an interview between Trinity and one of his patients who was on Xyrem. That helped. “A few days later, I began taking Xyrem,” she said. “And everything started changing. Everything.” THE RESURRECTION Finding a suitable dosage and getting used to the side effects of Xyrem proved to be a difficult process for Trinity, but once she found the right balance, everything began to fall into place. After the first month, she was not only staying awake throughout the day, but remaining alert as well. She could drive, she could think – she felt productive for the first time in years. During the second month, the symptoms for cataplexy became dormant. “Slowly but surely, I began feeling normal again,” she said. “And that’s when I realized I needed to get into shape.
11