By Larry Barber
I’m in San Miguel de Allende, Mexico, a 500-year old city that played a central role in the revolution of 1810. Cobblestone streets, a rising pink cathedral in the central plaza, and the colorful, vibrant street life that for me means Latin America. I grew up for a time in Mexico City, 1958 and on, still in the throes of a pretty bad case of Tourette Syndrome. Coprolalia is a difficult road for a ten-year old, along with physical tics. Did I swear in Spanish? I remember swearing only in English, but it’s possible. Back then there was no diagnosis. I was a mystery to my family and myself.
In my early teens, Tourette’s let me go. No swearing, no other tics. This is the usual course of TS, but normally in late teen years or early twenties—symptoms decrease or lessen in severity in a majority of cases.
Those early years scarred me, but the love and tolerance of my family during that Tourette time built in me resilience I was able to call on. With a lot of therapy, meditation, and hard work I began to heal my wounded self-image. I built a successful career writing and producing in Hollywood. I sang the Verdi Requiem with full orchestra and chorus. I travelled the world. I married a wonderful woman I call mi reina, my queen.
My great creative act was learning to forgive and love myself.
I remain grateful for the near-complete remission of my Tourette symptoms, although I still have co-morbid conditions such as severe depression (controlled by medication) and OCD. My gratitude expressed itself in my resource book for families and individuals An Unlikely Strength: Tourette Syndrome and the Search For Happiness in 60 Voices. For two years I interviewed men and women with TS, and parents of children with TS, helping them tell their intimate stories: how Tourette’s affects their lives and self-image, and how, despite it all, they persevere with strength and hope. The book shares stories of suffering and exile, as well as stories about creating fruitful and satisfying lives.
In the book I quote Carl Jung, who says this:
The acceptance of oneself is the essence of the whole moral problem and the epitome of a whole outlook on life. That I feed the hungry, that I forgive an insult, that I love my enemy in the name of Christ—all these are undoubtedly great virtues… But what if I should discover that the least among them all, the poorest of all the beggars, the most impudent of all the offenders, the very enemy himself—that these are within me, and that I myself stand in need of the alms of my own kindness—that I myself am the enemy who must be loved—what then?
Here is the heart of our struggle with TS. The great pity of Tourette Syndrome, I believe, is childhood onset. Children are only just forming a self-image and know no better than to look outside themselves for cues about who they are and how they fit into society. That world can be hostile and cruel, and children take those responses as truth.
All the more important, then, for family and friends to support a child by emphasizing that Tourette Syndrome is not who they are. Each of us contains multitudes, writes Walt Whitman. So help your children—help yourself—find those qualities that are positive, that are based in creativity and interests. Locate and develop talents. Encourage the belief that your child can accomplish what they set their mind and heart to. They can be—they are—so much more than Tourette Syndrome!
I will be writing this blog on a regular basis and I hope you join me in exploring topics of interest and inquiry. The Tourette Association and I want to be as responsive as possible, so I’ll be talking about topics that have come from you, our audience. I’ll also be working with TAA’s Youth Ambassadors—teens with TS who educate the public—to help them tell their stories in a separate blog on this site.