I remember clearly when the psychologist suggested he might have Tourette syndrome. I said, "Oh no. . . he just has allergies." When I left the office, I did NOT rush to the medical library to find out about Tourette syndrome. I vaguely remembered a magazine article I had read years ago about Tourette. The article had made the sufferers sound like monsters, and I remember being very disturbed by it. My family is still shocked that I did not go to that library to find out more. I am more than a little compulsive about researching relevant medical material on problems that affect our family. So how could I let the memory of an old magazine article stop me? I think I just dismissed it out of hand. . . my son was not a "monster."

Once my son's diagnosis was reality, I had some major readjusting to do to my attitude. I decided the best way to do that was to find out everything there was to know about this disorder, this 'Tourette syndrome.' Instead of being horrified, I found I was fascinated by what I was reading. In some strange way this disorder made sense to me. I understood it. This familiarity made no sense. So, I began to search around for an explanation.

The only explanation I could come up with for this 'personal understanding' was rooted in my own crazy medical problems. I began to speculate that the high levels of norephinephrine in my blood (which caused me to have high blood pressure and headaches) must cause some of the same phenomena as Tourette -- hence my understanding. I admit freely it was a stretch. But the 'stretch' allowed me to continue researching without worrying about anything being wrong with me.

It was during this period of researching that the doctors began trying to lower my norephinephrine levels. I was given a number of medications, many experimental. All of these manipulated my brain chemistry. I began exploding and having rage attacks for no reason. Fortunately after only a couple of months my doctor was able to fine tune the medications I was taking so that I was no longer exploding and I returned, somewhat, to normal.

The medication that finally worked, though not completely, was Buspar, which enters the brain and acts on the Dopamine 2 receptor. The D2 receptor had been mentioned in research articles I had read about Tourette. "Ah ha," I thought, "this confirms it! This explains my personal understanding. . . there must be related areas or chemicals in the brain. End of subject."

I went back to focusing on my son and all his problems. I went back to the books, soaking up just about everything written on Tourette syndrome. This involved reading neurology textbooks both old and new. Following a literature search, I retrieved and read all published national and international scientific papers on Tourette syndrome. Several of these papers were not in English, but much to my delight, I found that the library would provide me with translated versions. None of this seemed the least bit excessive. I was just satisfying my 'need-to-know' all there was to know so I could help my son.

I learned about sensory integration difficulties, learning disabilities, behavioral, attentional, organizational difficulties and processing problems. I talked with psychologists, psychiatrists, educators, language therapists and anyone else that I thought might possibly have information I needed. This was wonderful, insightful, stimulating, and very rewarding. I got wonderful strokes for "being such a good mother." Not that my son was any better off -- but at least no one thought it could be my fault. I mean. . . after all. . . look what I had been up to!

I became so knowledgeable I began the find a few symptoms in myself. It became a standing joke between my spouse and me when he would walk into our bedroom, and find me watching TV to my usual "curl-uncurl" toe routine. "Oh, you don't have Tourette syndrome!" "Hardly evidence of Tourette," we would agree!

By this time the new research was beginning to point towards the theory I called "Lumping and Splitting." The "Lumpers" would classify all the tic phenomena as one disorder and call all tic disorders a spectrum disorder caused by one gene. The "Splitters" would classify all tic syndromes separately considering each to be a unique phenomena. I was often reminded of people eating: You know, the ones who pick at each food item separately and the ones who mash them all together. I found myself convinced without reservation by the "Lumpers."

Then came my epiphany. It came in the simple toss of my son's head. One simple toss of the head, performed by my son, you know, the ADOPTED one. He had never tossed that particular toss before! Wow! That humble toss triggered a flood of memories. I had read about some simple occurrence triggering memory, but had never really experienced it. What a shock! I was remembering my brother. He had been dead for 23 years. He had unfortunately died by his own hand. HE HAD TOSSED HIS HEAD LIKE THAT ALL THE TIME. He blinked his eyes, squinted, drooped one eye, sniffed, snorted, shrugged one shoulder, lined up his toys, straightened his room, ordered his life, was the biggest pain in the neck -- alive or dead. He argued, fought, lied, ran away, contended, provoked, obsessed on violence (particularly hanging), the fear he had of that. . . .until he did hang himself. I called my mom and asked her if she remembered my brother doing any of these things. She knew about Tourette syndrome. Goodness knows, I had told her often enough -- about every facet of Tourette syndrome. . . she would know . . . right?!

Wrong. Oh, she remembered his movements all right, and added a few more. "But those things were just his habits," she explained. Next came my dad. He remembered even more 'habits' and he remembered that they got worse when he hit the third grade.

Now, as if for the first time, a puzzle began falling together. A whole lot of things began to fall into place. No wonder this disorder made so much sense to me. Please, remember, in many ways I was never a very good puzzle solver. I had always needed proof of value, before I would even consider a piece for use. It was about this time I remembered listening to Oliver Sacks talk about Tourette syndrome and hearing his remark about TS being just ". . . another way of being." I really liked the attitude. It just seemed so right. I had read and experienced TS with my child and perhaps my brother, but I now know I have more than a second-hand look at Tourette syndrome. I think the reason it took me so long to come to this realization was that none of the books and none of the articles had ever described . . . me.

TS has not been a major problem for me. In fact, those characteristics I attribute in part to Tourette syndrome, are so much an integral part of me, that I would not want to be without them. They are woven throughout my personality and integrated into the perceptions of my reality. In many ways they have added to my life.

Let me explain. My childhood home was what we have call today "very dysfunctional." We moved a lot. We children went off to different schools each year. There was a significant amount of abuse at home. In fact, our home was so out of control, I looked perfect. I never remember turning in a single assignment at school that had a crossed-out word, or an erased number. I did the whole assignment over, and again. Three times in fact. First for "content," second for "practice" and third for "real." It became quite a problem when I went into nursing. Nursing notes are legal documents. Nothing could be erased or removed. I HAD TO LEAVE IT THERE THE VERY FIRST TIME. . . .UGH! I learned to organize myself before I began. (I did the first copy for content and the second copy for practice in my head!) My crossouts were some of the neatest in the history of charting. I still laugh because my efforts did not go unnoticed. They were always cited as examples of desirable charting. They were held up to student nurses as something to be emulated! I chuckle when I think of what those instructors would have had to say. . . if they had only known my secret. Thank goodness for spell-checks and word processors!

I was an angry kid. No one complained. Compared to my brother I looked good. I had reason to be angry after all. Anger did not interfere too much with outside relationships because I was not so angry there. Anger definitely protected me at home. It kept me separate, pulled away from the fray. I would just think they were all acting so stupidly. Anger, in many ways, was my salvation. Without it I would never have had the courage to put a stop to what was going on around me. While it helped me then, it did not just disappear. I learned to channel my anger into more productive outlets. I am a magnificent campaigner! Convince me something is bad . . . that it needs to be changed . . . and I will move mountains. I am convinced a large number of crusaders carry much generalized anger and use it to get what they want.

As an adult, someone close told me to "just quit being angry." I remember being quite taken aback. Anger was and is a part of me. I needed it then, still do, and they couldn't have me without my anger. Fortunately, I was able to explain the reasons why I held on to my anger well enough to this friend that she and I are still close.

I was a mouthy kid. I never used profanity, at least not out loud, but what I had to say, and the way I had to say it, was most impressive. My father was my teacher at my school for over three years. My mouth . . . his teaching . . . what a combination. I distinctly remember overhearing teachers and many others asking my parents why they allowed me to speak to them in that manner, as if they could have made me stop! I cringe these days when I hear the same tone and provocative words coming from my son. I, too, am frequently asked why I put up with it. Well, I can kill the kid or I can keep him! I keep plugging away, and so far I am electing to keep the kid.

I was a provocative kid. One period of particularity provocative behaviors on my part occurred in high school during a study hall when I was actually studying. Another student leaned over and asked me how to say "heart" in Spanish. She, too, was actually studying. When I answered her question, the teacher stalked back to my seat and screamed, "I told you not to talk . . ." and stabbed me in the head with a pencil. I was properly horrified, the poor teacher was fired. In retrospect, after having a child with Tourette syndrome, I pause and consider that I probably orchestrated the event quite nicely.

I was also a very talkative kid. Yak, Yak, Yak, that's all my teachers reported on my report cards. While I was impulsive and talkative, I was also compulsively neat and complete. I guess the teachers liked neatness more than they disliked yakking and I got great grades. I think, on balance, I agree with the teachers. I got more than I gave. I was a spontaneous kid and always up for a good time. Generally having enough common sense, I seldom got in over my head. I was an intense kid. It was practiced wisdom in our house not to "get me going." I never let go. I still don't. No one ever needed to steer me into assertiveness training courses! I have found this characteristic to be another asset. I far prefer it to the alternative.

As I come into the present, I find that what held true as a child for me has remained true. It is difficult to know whether these characteristics stem from TS or are part of some 'other' part of me. Many of the people I meet that have TS share many of these characteristics. Are they part of TS or part of us? Who knows? I think the reality is it does not really matter. But I'm getting ahead of myself now. Let me get back to my story.

A few years ago, Buspar had become a problem for me. I had gone into a profound withdrawal and depression, ruminating on a problem without results for hours. I felt as if I was curling inward. My husband would find me just sitting frozen in our bedroom. He would be horrified and would ask me what was wrong. I would inform him that I was just thinking. My handwriting became very jerky. My ankles turned inward and up until it was painful. I decided it must just be depression. But something didn't compute.

In desperation I tried some of my son's Anafranil. This gave me function. I was not, however, "fixed." When I described these difficulties to my physician he withdrew me from Buspar and recommended I take Wellbutrin. My reaction was ridiculous. I refused, saying, "I can't take that! My son takes that for TS!" I DIDN'T HAVE TOURETTE SYNDROME! But I agreed to take Anafranil which my son also took for TS/OCD problems. After I was told I had been showing early signs of a Pseudo-Parkinson's, I quit being ridiculous and started the Wellbutrin. What a relief. I had an almost total reversal of depressive symptoms and complete relief from headaches. With the relief I gained I was able to begin looking seriously at my "other symptoms." I know I walk around the house straightening the pictures on the walls. The kitchen must be cleaned before bed, I cannot cook with a dirty counter, and I cook meat using sterile techniques I learned in nursing school. I have, on occasion, cleaned a cousin's dirty kitchen in the early morning so that I could cook breakfast. My brother still teases me about the train-set in my son's room. It is up on a high display shelf. When we first moved into our home I was positioning the train-set so that it would look good from the doorway. I made him move it this way and then that way until it was exactly in the right place. He found it so amusing because this whole exercise was over about one inch. Being the tease he is, my brother will visit and deliberately leave his clothing on the floor. After about three days of visit, I can no longer cope with the 'guest room.' I will pick up and clean. Upon completion he will dramatically toss something down on the floor and dare me to leave it. I have yet to be able to take the dare!

Now, I am sure that there are many people that would find these characteristics a problem. I do not. In fact I like them. I like a clean, ordered house. When I have been unable to clean the house myself, I have been fortunate enough to be able to afford the help to get it cleaned to my satisfaction. Perhaps if I couldn't and wasn't able, it would become a problem.

I now have added finger drumming to my repertoire. Drumming in the air will do, but usually on something is best. My toes go most of the time now. I also wiggle my right ankle regularly. Along with the old leg jiggle, I now shake both heels and echo many other tappers I see. The beauty of all of this is that no one ever notices. I do it mostly in the car or when I'm alone. Many of my friends are flabbergasted when I say I, too, tic. It should be of no surprise to many Touretters that many of my doctor friends would deny it is possible that I, too, have Tourette syndrome.