The first 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.
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 hermother 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 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 lucidly, 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.
“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.”
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 that was on Xyrem. That helped. “A few days later, I began taking Xyrem,” she said. “And everything started changing. Everything.”
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. I was given a second chance, and I had to give it another try.”
It’s a long road from your self-described lowest low to a stage on the Las Vegas strip, and it didn’t come easy. Hamilton put herself through a “Biggest Loser-style boot camp,”practicing hot yoga regularly, hiring a personal trainer, shedding pounds; whatever it took to gently ease her point shoes back on. By the summer of 2008, nearly a year after starting Xyrem, she was back to her “fighting weight.”
She attended a professional workshop in San Francisco with Lines Ballet Company, and it was there that Trinity was given the big push she needed.
“The artistic director of Lines was a former colleague of mine at Joffrey,” she said. “And he kept encouraging me to stop teaching and get back on stage. That was a big jump for me, having other professional dancers telling me that I needed to be performing.”
After auditioning for a few companies, she packed up and prepared to move to L.A. Days before she was set to move, she received a call from Cirque du Soleil asking her to come audition for Mystère in Las Vegas. She flew to Vegas and auditioned on Halloween day, 2009. In mid-November, Cirque called back with their offer. A month later, Trinity was living in Las Vegas as a working dancer with Cirque du Soleil.
“It’s funny,” she said. “Attending Joffrey was my childhood dream, and once I started getting back into shape, Cirque du Soleil was everything I wanted for myself. It was one of those amazing dream come true situations. Again.”
Here’s how a day in the life of a Mystère dancer typically works: You arrive at the Treasure Island theater by 4 p.m., rehearse, do a show (or two), leave at 11:30 p.m., home by midnight, wind down, go to sleep. You’re off Thursdays and Fridays, two weeks in January, a week in May and a week in September. You work every holiday, totaling roughly 475 shows a year.
Trinity’s first year in Vegas was tough. She didn’t know anyone, she was getting used to the town and the lifestyle, adjusting to a new sleep schedule, and so on. It was all work for her.
“It was important to make sure I could live up to the challenge,” she said. “So for that first year, I was firing on all cylinders. I had to make it through that first year with no problems.”
The hard work paid off. Her dancing was strong, her confidence was newly fulfilled; she was back to living her dream.
Today, Trinity has made a life for herself in what she describes as a beautiful town. “Vegas has this persona of being… Sin City,” she says with a laugh. “But outside of that, it really is a lovely town, a sprawling suburbia off the Strip. It’s actually a very normal life.”
When I ask her if her sleep is okay, she eases out a, “Yeah,” with an audible sigh of relief. “I have to make a point to sleep,” she says. “So sometimes I miss out on things. It’s Vegas, so there is something to do at every hour. But birthday parties, or get-togethers after shows, I usually have to skip out on those. Sometimes I’m asked to volunteer for PR gigs with Cirque, which I’d love to do, but because they are early in the morning, I just can’t. Medically, I can’t. It’s a little tough, missing out on those social engagements, but I have to get eight hours of sleep.”
When I broach the issue of how Narcolepsy is often depicted with humor in pop culture, Trinity’s tone becomes serious.
“It is an extremely misunderstood disease,” she says. “In terms of how it is depicted, it’s just a matter of getting people educated. People think that Narcolepsy is uncommon, and I know it is considered a rare disease, but statistically, it’s as common as Lou Gehrig’s and MS, I believe.” (According to the National Library of Medicine, approximately 15,500 Americans live with Lou Gehrig’s disease, 155,500 have Narcolepsy, and roughly 300,000 people suffer from Multiple Sclerosis.)
“You bring up Narcolepsy, and people know it as that falling-asleep disease,” she says. ”But there’s a seriousness about it that people should be aware of. The more education there is about it, the closer we may be to finding a cure.”
When asked if she has any advice for people who are afraid to fight for their dreams, Trinity’s response is optimistically direct.
“Everyone has challenges in their life,” she says. “Even in the darkest of times, I reminded myself that I had to value and appreciate what I had. I honestly do not know what inspired me to become a dancer. That remains one of those beautiful mysteries. But I’ve always been inspired by other amazing stories. By people who have fought in wars, or have other diseases, or stay at home and raise their children. We all have our challenges, but in terms of living out our dreams, of taking that leap, the biggest fear is within ourselves.”
It’s interesting that Trinity gains inspiration from other amazing stories. Call it a hunch, but it wouldn’t be surprising if hers inspires a few people as well.Posted in Diseases, Featured, Media Center, Uncategorized | Tagged Ballerina, blog, Caring Voice Community, Cataplexy, CVC, narcolepsy, Trinity Hamilton | 3 Comments