Many years later, I was also diagnosed with a form of dystonia, an even lesser known neurological disorder. They say 300,000 people in North America have some form of dystonia, but through my experience I know those statistics are low. Many doctors have never even heard of dystonia. Often, only the most tenacious get a diagnosis, seeing up to 80 doctors before the disorder is properly recognized!

After experiencing how a TV broadcast can reach millions and radically change the face of a disorder, I set out to make a film about people who live with dystonia. My hope was to make a film that would educate the public about dystonia and lead to more people getting diagnosed faster.

But my challenge was: how could I make a film about a specific neurological movement disorder that will interest the general public and that will be sexy enough to keep them engaged for a full hour?

Here is where I got lucky. At a dystonia conference, I found Shari and Ira Tritt. Shari who can’t speak, as a result of a childhood brain surgery to treat her dystonia, and her husband Ira who is a self-proclaimed “loud mouth New Yorker.” They met on the Internet, and their relationship transcends language. I also found Remy Campbell and Peter Cohen. They both had undergone a radical form of brain surgery called deep brain stimulation (DBS) that completely transformed the way dystonia impacts their lives.

I then decided to find someone who was considering doing DBS and follow them for a year. I was introduced to Pat Brogan, a basketball coach, who developed dystonia as a result of a bicycle accident. When I first met him in August 2004, he was contemplating whether to have the DBS surgery. After much deliberation with family, friends and doctors, he decided to go ahead with it, and we shot his entire operation (which lasted nine hours). In my naiveté, I fully expected his results to be as remarkable as those of Peter and Remy. After all, DBS worked magically for them. It was almost like science fiction! The film would have a happy ending.

That is when the trajectory of the film took a turn. Following the surgery, Pat’s dystonia worsened. And instead of communicating with me, he would disappear and hide. I was trying to be respectful of his privacy, but how could I document his struggles without being intrusive. I decided to hand Pat’s wife Cathy a video camera. She collected the most intimate footage of Pat on his journey—footage we never could have obtained in the presence of a film crew. She shot footage of him at his doctor’s appointments and at basketball practice. Pat even took hold of the camera and filmed himself talking about his deep frustration and anguish with the unpredictable outcomes of the DBS.

The rollercoaster ride we all took with Pat was haunting and completely unexpected. It was painful to watch him get better only to go downhill again. We had no idea where the film was going to land. The films I made in the past were upbeat and what one might call “feel good” films. This film was becoming a tragedy… right up until the last month of shooting when things took yet another turn.