This morning a friend posted an unlikely “coming out” story on his Facebook page.
He revealed that as a child he unknowingly struggled with a mild case of Tourette syndrome. His parents took him to a psychotherapist who identified his physical tics as “bad habits” that had to be broken. And so he learned to suppress or hide his tics from public view. He spoke of the energy that it took to accomplish this task, energy that could have been directed into other areas of his life.
My friend included an artfully didactic video with his post. The video begins with a young boy displaying verbal and physical tics in a middle-school classroom. He is made to stand in front of the class by his teacher and instructed to apologize for disrupting the learning of his fellow classmates. He is then sent to the principal. The principal calls for a meeting with the boys’ mother and describes the boy as a bright student who needs to reflect on his self-sabotaging behavior in order to correct it. When the boy says he cannot help it the principal dismisses both the boy and his mother. In the next scene the boy has been moved to a new school where the same patterns of shaming are arising. The boy is sent to the principal who asks him, “What is school for”? The principal then explains that school is an institution dedicated to dispelling ignorance through education. He then asks the reluctant boy to attend a school concert that afternoon. The boy does so. At the end of the concert the principal stands on the stage and asks the assembled students if they heard any disruptive sounds during the concert. The assembly nods in the affirmative. He then introduces the boy who was making the noise, by name, and asks him to come to the stage. Once there, he asks the boy if he likes making disruptive sounds during concerts. The boy says that he does not. The principal asks, “then why do you do it”? The boy reveals that he has Tourette Syndrome and that he cannot help it. He goes on to explain that the tics become worse when he is uncomfortable and that they go away when he feels accepted and appreciated. The principal assures the boy that everyone in the school will accept him and that there is no room for shaming in an educational institution. The assembled students and teachers applaud the boys’ bravery as he walks back to his seat ticcing at full tilt.
My tears began to flow somewhere in the middle of the video and have continued all morning. You see, growing up, I, too, suffered many uncontrollable tics: eye stretching, eye rolling, eye squinting, neck stretching, mouth manipulations, scratch patterns, humming, grunting, head jerking, etc. The ticcing began when I entered the first grade and peaked in the first year of middle school. After six years of ticcing my mother, who was deeply motivated by image and the appearance of normalcy, was at her wits end. As she later explained, she had tried every tactic she could think of to make me stop, but nothing worked.
As I reflect on my childhood I remember years of mother calmly talking with me regarding my ticcing. She let me know that, as a child, she too had tics and that she outgrew them. Therefore, it stood to reason that I would outgrow mine, as well. When this didn’t happen as quickly as she desired she spoke with me about awareness, self-control, and of developing the ability to exercise authority over the tics. This only proved to exacerbate the problem. Though I became aware of how often I ticced and found that on occasion I could hold the tics at bay, it was an excruciating exercise that exhausted my mental and emotional faculties and left me feeling like a complete failure. It seemed that the energy creating the need to tic would build and build within me until it finally burst forth in a larger, more violent and complex version of the previous tic.
Perhaps I can explain it more clearly. Have you ever had an itch that you couldn’t scratch? Poison Ivy? Poison Oak? Psoriasis? If you have, you know the experience: the itch announces itself, the mind instructs you to scratch it, the mind police apprehend the impulse to scratch, the itch intensifies, there is a stand off which produces ever-increasing agony, you are driven mad until you finally explode in a mental, vocal or physical expression of frustration. This was my experience of ticcing. And the more awareness and self-control I practiced the more the tics evolved. Fueled by my ever-increasing urgency to appear normal I became more and more dysfunctional, literally. I couldn’t focus on my schoolwork, a conversation, a television program; all I could do was focus on the tics. My mind was completely consumed.
When I was in the third grade a marvelous chorus teacher came into my otherwise average elementary school. She opened the hearts and minds of our class with the joy and passion she conveyed through music. She survived for only one semester, but in that time she raised the bar for all who were privileged to be in her classroom. At the end of the semester she organized a concert of classic Americana songs. This would mark my first public performance and I was both excited and nervous to sing in front of the students and the parents who had gathered. I sang my heart out that night and was so proud of what we had accomplished. But, when my parents and I got in the car to go home the air was tense and my mother was rigid. I didn’t understand…had they not liked the performance? My father said something about the great songs and the energetic conductor. My mother wheeled around and said, “the lady behind me couldn’t stop talking about that boy up there making all those strange faces. What’s wrong with him? Is something wrong with him? Does he have something the matter with him? Do you understand? That’s what people think about you…that something’s wrong with you…do you understand? People think something is wrong with you!”
Please know that these words are not written to demonize my mother. I never loved anyone as whole-heartedly…and that loved flowed in both directions. Before she died the two of us processed all of these experiences at length. She was in full agreement that this was not one of her finer parenting moments. As she said to me, “I was at my wits end. I didn’t know what else to do. I didn’t want people to think anything was wrong with you. And, I didn’t know how to help you. I am so sorry”. Her apology was accepted long ago and I now understand her dilemma. But at the time, I did not. I was deeply wounded…and her disappointment inspired more angst, and of course, more ticcing.
For the next three years the ticcing grew and evolved. The most complex of the tics was actually a series of tics. It was a scratch pattern that began at the top of my head and ended on the bottoms of my feet. On the way down every joint, the neck, and the waist had to be encircled with scratches. It was a long process, and once begun, the pattern had to be completed in its entirety. Just thinking about it makes my entire body itch…even now, as a 54-year-old man. These tics and my desire to control them consumed me, took away my ability to be present or to retain information. My performance at school faltered…my once scholarly orientation was lost, and I found myself feeling confused and without direction or guidance.
In 1977 I entered middle school (sixth grade) with two hundred other 11-year-olds from three different elementary schools. It was a terrifying time and one that sent my ticcing into overdrive. I found it nearly impossible to make friends or to connect in the sea of new faces. Some of the students seemed to think that I was funny…they laughed at me, or with me…and I did my best to play along…to pretend that I was the author of their merriment. In this way I became something of a clown. But, I was primarily a loner, a nerd, existing on the periphery of middle school life.
There was one bright spot in my day and her name was Faye. Faye was a fresh-faced, heavyset African American girl and I met her one morning before the first school bell rang. My mother dropped me off early each day and I had 15-20 minutes to wait before reporting to homeroom. I would sit on the wide span of cement stairs leading to the door of the band room. One day I was sitting on the end of the top step, a girl came and sat on the opposite end of the bottom step. She looked up at me, I looked down at her, and then I held out a piece of Bubble Yum chewing gum. Her face brightened and she moved toward me. We started blowing bubbles and talking…and then we decided to walk. Her name was Faye, and every morning for the rest of the year, we walked the breezeways of the campus, exploring all the different flavors of Bubble Yum and Bubblicious chewing gum and having bubble-blowing contests. It was easy…so alive and sweet…and then, school would begin…and it was so very difficult.
One day, during our morning walk, Faye stopped and turned to me. She looked into my eyes and gently asked, “Why do you do all that stuff with your eyes and your face? You’re so handsome…but people can’t see how handsome you are when you make all those faces”. I was dumbfounded: me, handsome, really? I said to her, “I don’t know why I do it. I don’t know I’m doing it most of the time. I can’t stop”. She said, “oh, all right”, and then she blew a bubble the size of my head. I popped it with my finger, the bubble exploded all over her face and we both laughed as she peeled the gum from her cheeks. The bell rang; we went to class and never spoke of my ticcing again. However, that moment, Faye’s words in that moment, and the love, the acceptance, the generosity with which they were spoken was at work inside of me.
Something had shifted. Unknowingly, Faye had given me a new lens through which to see myself. And unknowingly, I was using it. For the first time the outcome of practicing awareness and self-control changed; the urge to tic lessened in intensity and eventually it dissipated. Over the course of the next two years I was able to gain authority over most of my ticcing…and the majority of the urges went away. Somehow, I became handsome, not because it was demanded of me, but because I was given permission to be so.
As I reflect on this experience, and other similar experiences in my life, it seems to me that love and acceptance are two of the few things that empower lasting positive change.
Currently, the elaborate scratch pattern has been reduced to a repetitive gesture that my nieces imitate to poke fun at me. It is a three step series: pinch the nostrils, push the glasses up, and smooth the mustache. Clearly I do it all the time without awareness. And, I still grunt, softly, when I am fully concentrating. During my college years I saw Gorillas in the Mist with my buddy Danny. As we were exiting the theatre he turned to me with a deeply concerned look and said, “Umm, were you talking back to the Gorillas?” I told him that I was not…that I was just a “grunter”. He accepted the explanation without further question. I, too, have accepted my grunting as part of the musical experience that is Me.
I was never diagnosed with the syndrome but had many of the symptoms. My case was clearly mild, though deeply challenging, and I have learned to live with it. For others it can be much more severe and the process of coming to terms with it can be more difficult. There are resources available to those who need and desire them. A good place to begin would be the Tourette Association of America. https://tourette.org/
All goodness to you,