Attempting to Lead a Life of Dignity

At first glance, the lobby at the Holiday Inn Eastgate in Cincinnati appeared normal. I looked around curiously for indications that things were different here.

At one table in the hotel atrium, a man sat, arms flailing wildly. Walking down a walkway, another man grunted loudly and his neck jerked. I nodded and grunted out several involuntary obscene words. I would fit in here, at the national conference of the Tourette Syndrome Assn.

Tourette Syndrome is a neurological disorder. Symptoms include chronic involuntary tics, involuntary noises, in some cases involuntary inappropriate words and, in some, behavioral problems including obsessive-compulsive disorder and attention deficit disorder.

I have had the disorder since the age of 8, and over the last 18 years I have tried desperately to come to an understanding of what my friend David would say is the million-dollar question: What makes Adam tic?

I was apprehensive about attending the conference, for fear it would bring up some unpleasant feelings that I thought were better left buried. The years of misdiagnosis, the teasing and torment from the other students in high school, the day I was told I could never be an English teacher because “no one would hire you.”

By that evening I was part of a group of about a dozen young adults with TS who could best be described as the super-survivors of the movement disorder world.

Steve Bachner was the most noticeable, both for his delightful sense of humor and for his severe symptoms, which were both frightening and funny. He was obsessed with the word chicken this week and let loose a variety of phrases about the word, which quickly became jokes everyone picked up. He also engaged in the involuntary swearing that had plagued me over the last seven years, and in a strange way this made us brothers.

Lowell Handler was a photo-journalist who had come to the conference with Oliver Sacks, a neurologist and author. Sacks’ chapter “Witty Ticcy Ray” from his best-selling book, “The Man Who Mistook His Wife for a Hat,” was made into an off-Broadway play called “Drummer.” Sacks and Handler were collaborating on a piece for Life magazine. Their presentation to us on Touretteville, a village in Northwest Canada with a high incidence of the genetic form of TS, moved me and the others in our group.

In our own way, those of us at the conference with TS were living in Touretteville that weekend. In a mysterious phenomenon called echolalia, TS people tend to pick up tics and phrases from others, and the various dances of friendship we engaged in were the life rituals that joined us together.

Sharon Rifkin (the spunky president of the Central Florida Chapter of TSA), Lowell and myself spent a great deal of time together, discussing our experiences. Lowell had expressed to Sacks that his greatest wish would be to meet a nice woman with TS, marry her and move to Touretteville.

Saturday afternoon I was sitting in the bar with several other people with Tourette Syndrome and their families when Bill Rubin, a social worker with TS came in, looking upset. “Steve had the cops called on him at the Wendy’s next door.”

“Is he OK?” I asked.

“I think so. Terry Gibbs is talking to the cops.” Terrence Gibbs is an ex-policeman with TS who had lectured earlier about problems between law enforcement personnel and people with TS.

I went out to the lobby where Steve was sitting, writing down what had happened at the Wendy’s. He said he had stood in line, off to the side so his arm jerking wouldn’t disturb anyone, and had been passed over for service. He had then been able to order, had been served and had sat down in an isolated corner.

The manager had come over and said to him, “You can’t do that in here.”

Steve explained to the manager that he had TS and showed the manager information from the conference. The manager had refused to look at the informational pamphlets or medical identification material and insisted that Steve leave.

“Either you go,” the manager said, “or the police will make you go. I’ve already called them.”

Steve decided to go back to the hotel to get someone from our national organization. Gibbs suggested he stay in the hotel and meet with the police. “We have no problem with him,” the policeman told Gibbs reassuringly. “We know about TS.”

“You may have no problem with him,” Terry responded, “but he has one with the restaurant. His civil rights have been violated.”

At 8 that night Steve, Sacks and Dennis Hirschfelder, executive director of the Tourette Syndrome Assn., were on the phone for an interview that ran in the Cincinnati Enquirer the next day. Over the next two days television, radio and newspaper articles educated Ohio to TS in a way no public service announcement could.

Wendy’s felt that the manager had behaved properly. The 225 conference attendees felt otherwise. We who have Tourette Syndrome want to live in the world and have a right to be here.

What I learned from the conference is that I’m not alone. I have 100,000 brothers and sisters with Tourette Syndrome and 3.5 million more with related disorders.

Next year we’re planning a retreat for adults with TS. We will eat at a fast-food restaurant every night, and when people react with ignorance and hostility we will shower them with educational information until the whole world knows about TS.

Then we will be able to get on with living, noisily and with much movement, but with dignity.