Disney's Frozen was a highly anticipated movie in my household during autumn 2013, which also happened to be a painful and challenging season for my entire family, but especially for my youngest child.
My daughter was a dancer, having passed her Royal Academy of Dance Intermediate Foundation exam at age 11. She completed six years of dance studio discipline, and has always had exceptional coordination and grace. During the summer and into the autumn of 2013, I watched her pound her own flesh until it bruised, as if she had no choice, as if she were a puppet on strings. I saw the seemingly random and painful contortions that she put her body through, or it put her through -- it's difficult to tell in the moment. These motions even threw her from her bicycle on occasion. She is a fighter, and I saw that, too.
When my daughter and I finally watched Frozen, it was three days after she had been diagnosed with Tourette Syndrome (TS). We walked into the theatre in a highly stressed state, in a degree of shock, but grateful to know what we were dealing with.
Frozen is a love story on several levels: romantic love, sibling love, and, most significantly, love of self. The eldest sister in a ruling family, Elsa, is born with a condition over which she has only minimal control. It is a fascinating condition, but not without risks. One day, an accident causes her parents to force Elsa into hiding. Later, when it is necessary for Elsa to enter public life as an adult, she tries to hide her condition. Not even her sister, Anna, knows about it. When Elsa's condition is finally discovered, she is feared, despised, and driven into true exile. Elsa's story is summed up perfectly in the Golden Globe and Academy Award nominated song "Let it Go," composed by Kristen Anderson-Lopez and Robert Lopez. It is a song that has changed my daughter's life.
When Elsa sings that she is in "A kingdom of isolation, and it looks like I'm the queen," she mirrors my daughter's current experience, the life condition of a joyful, vibrant girl who has lost control over her body and has gone into a kind of exile as a result, leaving behind known activities, not knowing how to tell friends, wondering how and where she will feel at ease.
"Conceal, don't feel. Don't let them know. Well, now they know. Let it go, let it go. Can't hold it back anymore... I don't care what they're going to say. Let the storm rage on..."
Finding the psychological and emotional strength to let go and be yourself, despite the stress of not knowing what your body might do, is no easy task. "Let it Go" is my daughter's new anthem.
"The wind is howling like this storming swirl inside. Couldn't keep it in, Heaven knows I've tried."
Many people with TS describe the sensation of a pressure building from within that must be released. The timing and nature of this release is rarely, if ever, in their control. It is critical that witnesses to Tourette tics remain calm and continue with whatever it is they were doing. Creating a scene, or gawking, only stresses the one doing the ticcing. Elsa's special condition, in the end, is integrated smoothly into her daily life in the kingdom. Everyone knows and, even though Elsa is highly unusual, it is no longer unnerving to see her do her thing. This acceptance makes Elsa a better person, and the kingdom a better place in which to live.
A story can make a world of difference.
Dr. Rita Sharon is someone for whom I have the highest admiration. She is one of the founders of the Narrative Medicine program at Columbia University, a program that, in her words (during a TedxAtlanta talk on September 13, 2011), is "Clinical practice fortified by the knowledge of what to do with stories." When patients are given the opportunity to tell stories about who they are and what is happening to them, both physician and patient are unmasked to the disease or condition. This partnership in humility allows for a "clearing," the space created by the sharing of the story -- like a clearing in a forest. The clearing is the space for clear thinking to emerge, in the sense of a clear new vision of the patient's life. It can be frightening, but also liberating to compose a new destiny, to become the hero of a new story, a story that is your own, even if it is not the story you originally expected.
My daughter walked out of the movie theater with renewed hope that she will overcome her difficulties. She is incorporating elements of Elsa's story into her new life story in a way that makes sense to her. Regular listening doses of "Let it Go" help, a lot.