Dr. Oliver Sacks worked much of his life to unravel mysteries of Tourette Syndrome, Autism, and Parkinson’s. NJCTS was honored to have Dr. Sacks speak at our very first gala in 2001. He was a truly gifted individual who will be missed. Faith Rice, Executive Director of NJ Center for Tourette Syndrome (NJCTS) remembers Dr. Sacks in the following post. Enjoy.
I had the honor of getting to know neurologist and author Dr. Oliver Sacks when we were in the early stages of creating NJ Center for Tourette Syndrome (NJCTS) and establishing the direction of the organization.
When I began my personal research on Tourette Syndrome (TS) I came across his book, An Anthropologist on Mars, which brought compassion to many neurological disorders, including TS. I then had the privilege to learn about him by speaking with some of his former patients who shared my fascination for him. Over and over they said that he took the time to try to make sense of all the “crazy” things TS made people do. He created enormous awareness and sensitivity around a TS diagnosis and shared with the general public his curiosity at unraveling the mysteries of Tourette Syndrome.
Dr. Sacks, based on his clinical work and research, focused on people living with TS and was, perhaps, the only author to write about those with TS in such a compassionate and understanding way, humanizing this often misunderstood and misdiagnosed disorder.
In 2001, we were preparing for a gala to be held at the AT&T headquarters in Basking Ridge, NJ, and we invited Dr. Sacks to be our guest speaker because of his wonderful work in TS. I worked with his team for more the 6 months, reviewing scripts, and preparing him for the evening. To our delight, he agreed.
On the day of the gala, Dr. Sacks arrived early, in the middle of set-up and insisted that I sit and share with him everything about our work and plans for moving our organization forward. Of course, I knew I had to. In the midst of finalizing last minute details for the event I stopped everything I was doing to spend one-on-one time with him. We spent the next hour getting to know each other, talking about TS, and about our growing efforts to spread awareness of the disorder. I shared my vision of that, through partnerships and collaborations, NJCTS sought to provide a continuum of services and support for families, provide training for medical and educational professionals, and advocate for collaborative research for better treatments and a cure for TS. I had no idea at the time that this would be one of the most special hours of my life. He was warm, brilliant, and compassionate. I distinctly recall him saying to me, “You are doing God’s work.” His words have stuck with me ever since. He was the perfect guest speaker that night.
Also at our gala was rising-star Tim Howard, now US Men’s National goalkeeper, who spoke about his struggles with TS and growing up on New Jersey soccer fields. Dr. Sacks quickly became intrigued by Tim and his amazing athletic prowess because of and in spite of his TS. Sacks was curious about the ability of an individual with TS to take advantage of their TS and channel its hyperfocus in a creative or athletic way. His work helped shape the public’s understanding that TS is more than just strange tics.
Oliver Sacks shared my vision for the TS community. He was a truly gifted and brilliant individual who taught us so much about each other. He will be missed.