In October of 2002 Michael attended his first National Tourette Syndrome Association Conference. He wanted to share some highlights and photographs from a weekend he said he will never forget.
At ease. At home. Complete. I could not have felt more comfortable if I was curled up with a good book on my couch in my pajamas drinking a cup of tea.
The first thing that told me this would be a weekend to remember was when I stood at the check-in counter and noticed a letter from the Hilton. This letter informed the hotel’s other guests about the conference and what they may see or hear. There was up-to-date-information from TSA explaining our disorder. I was very impressed.
After I checked in at the hotel, I was greeted by a young lady named Wendy, who was such a sweetheart. I received my name tag and a bag of assorted goodies for attending. I was directed to the Artists with TS table where I would sell my books. After getting set up, I ventured upstairs to the lobby where for the first time in my life, I saw Tourette syndrome in its uninhibited form. Even two years of working on the book could not have prepared me for what I witnessed.
It was a truly magical weekend filled with the sights and sounds of TS. I cannot explain what it was like to be in a room full of people who didn’t care whether I was ticcing. I felt empowered to just be myself. The entire weekend was filled with moment after moment of amazement, as I met some of the most incredible people. Chats around the coffee tables in the hotel lobby were punctuated by whistles, chirps, and obscenities, as those with more severe symptoms went about being themselves. I, for one, was amazed at the range of motor and vocal tics that I experienced.
Dr. Oliver Sacks’ keynote speech was unparalleled, as was my sense of awe at watching him speak about TS and what it means to him.
One of my most emotional moments of the conference was when Oliver Sacks and I exchanged books. Knowing I was signing my book to such a distinguished and well-respected person was a joy that will last forever in my heart. And I will cherish the book that he so generously signed for me.
Although meeting Oliver Sacks was a moment to be treasured, I must say that I have never been moved more than I was when Lynne, the mother of a young lady with TS whose drawing I had purchased from the Artists with TS table, remarked that her daughter was so excited that a “real author” had purchased her work. Well, Liz, I’m not so sure about the “real author” comment, but I know that I was more than pleased to make your acquaintance. You are a beautiful young lady and don’t ever forget that you are a role model for other children with and without TS because you have proven that anyone can achieve their dream if they simply try. Don’t ever let anyone keep you from your true talents.
I was rummaging in an ice cream cart when I literally bumped elbows with Rachel Silverwood, the young lady who had appeared on The Practice. I was so excited about meeting her that my ice cream began to melt before I opened the wrapper.
I had the pleasure of meeting two of the wonderful folks who reviewed my book, Sheila Rogers, the director of the Association for Comprehensive NeuroTherapy, and Michael Wolff, the most incredible jazz pianist I have ever heard. His stage performance with his band, Impure Thoughts, was exquisite and I felt fortunate to be able to see him work his magic. I also had the honored opportunity to meet Rick Fowler, an incredible guitarist and a man whose book, The Unwelcome Companion, An Insider's View of Tourette Syndrome, is a must for everyone’s library. Jim Eisenreich, a man who has used his fame from his fifteen-year baseball career to help children with Tourette syndrome, was undeniably down-to-earth and a special person in my eyes. He is a role model for children and adults alike.
I am humbled to have been a part of a weekend that I will soon not forget. The people that I met have changed me for life; from Luke, who overcame discrimination in the workplace, to Andreas, a man whose extreme case of Tourette syndrome never once stopped him from approaching people and engaging them in an incredibly animated and intelligent conversation. I am a better person for having met them.
On Sunday morning, I was moved to tears when the group of folks with whom I had spent much of the weekend got together to say good-bye. I didn’t want to leave; no one did. I stood there for a moment just to frame a picture in my mind.
As I drove home that day, the tears flowed from my eyes; I was less than fifty miles from the hotel when I realized that I already missed them. Each one of them is a gift to be opened and a dream to be achieved. Each one of them is dear to my heart and I will never forget them.
I eagerly await the next conference.
After I returned home from the conference I spoke with a friend I met there and she mentioned something to me that took my breath away. Laura described a touching scene much more eloquently than I ever could. I would like to share that with you.
“My plane wasn’t leaving until the evening, so I went sightseeing Sunday afternoon and returned to the hotel around four o’clock. I entered the lobby, where for the past three days we had gathered, drinking, laughing, and celebrating, and I noticed that it was completely empty. Not a soul was there. It was completely quiet. The sounds of Tourette’s were gone. I grabbed my camera and took a picture of the empty lobby so that I could have a memory of what I was feeling at that moment. Loneliness. Emptiness. The lobby reflected my emotions.”
It is with the greatest pleasure that I share with you some of the photographs from the conference. Please enjoy!
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Click here to see photos from the conference.
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