World known neurologist Oliver Sacks (who wrote the forward to a book on Tourette syndrome I co-edited) explained what his first TS patient told him (in The Man Who Mistook His Wife for a Hat, Summit Books, 1985): Having Tourette is wild, like being drunk all the while. Being on haldol is dull, makes one square and sober, and neither state is really free... You "normals", who have the right transmitters in the right places at the right times in your brains, have all feelings, all styles, available all the time -- gravity, levity, whatever is appropriate. We Touretters don't... You are free, you have a natural balance; we must make the best of an artificial balance. Physically, TS can be very painful. Some of us with the disease have permanently burn-scarred fingers from needing to touch hot surfaces, herniated spinal disks from powerful back contortions, injured neck muscles or head injuries from shaking, jerking or twisting, bleeding fingers from biting. There we days when my muscles tighten enough to inhibit walking, when my diaphragm spasms until I am dizzy and must self-administer oxygen (which I carry as an Emergency Medical Technician) to raise 02 tissue saturation, when my eyes convulse and hurt, blurring vision. Then there are the associated symptomology of obsessive-compulsiveness (OCD).... tics and spasms of the mind and emotions. But that is not all there is.

        Years ago I watched Barbara Walters interview Kiti Dukakis, the Massachusetts governor's wife who relapsed into alcoholic drinking after undergoing a 28 day treatment program. Mrs. Dukakis quoted her first line in her autobiographical book: My name is Kiti Dukakis and I am an alcoholic and drug addict. How "correct" are these words in the prevailing addictions paradigm! I have heard people "announce" or confide that "I am an alcoholic; addict; overeater; compulsive gambler; codependent; Touretter; OCDer... " and I ask them, "Yes, and what else are you?" Often the replies are, "Executive.. teacher... plumber..." Second to their primary label as being a dysfunction, these persons identified themselves as being their jobs. But who are they really? So I resist the notion that I am a "Touretter" or "OCDer" or I am disabled. While I do not deny these disorders influence my functioning and moods and even my spirituality, they are part of a tremendous matrix of interconnecting aspects of the fabric of who I am, aspects which, when given attention, overshadow and overpower the deficits. Are there gifts and strengths in "being" a disorder or embracing it to the exclusion of one's total personhood? I maintain that embracing it to the inclusion of one's personhood transforms disability into ability, deficit into strength, burden into gift.

        Several contributors to our book spoke eloquently of the intrusive nature of OCD. One wrote: "Adam, with his large sky-blue eyes, rosy cheeks, and curly hair should be an irresistible two and a half year old. When the sweet, elderly woman in the supermarket pats him on the head and tries to engage his attention, he lets out a bloodcurdling shriek. He nearly throws himself out of the shopping cart. This kindly senior citizen has just interrupted his tally of grocery products that begin with the letter"B".  He needed to remember them in the exact order in which his shopping cart passed them.  He is now in aisle thirteen.  He screams, inconsolable, because he knows that his mother will not wall up and down each and every aisle letting him recheck his list... It was the Obsessive-Compulsive Disorder that caused Adam to work all of his math problems in binary, then base sixteen, before he could work them in the standard decimal system.  It was the time consuming rituals of OCD that made him perpetually late for the school bus.  It was the mind rituals of counting, reciting and categorizing that made it difficult to get words out of his mouth."   Another describes his symptoms in this way:  "It is closing the doors time and time again until sensations inside him announced 'It's okay now, the door is closed correctly,' even though he know it was closed correctly the first, second and third time...It is rolling up the car window a dozen times, locking doors over and over again, wringing out wet rags to the point where every muscle and bone in his hand aches...It is reading a sentence in a book or in a newspaper four, five, six or as many times that he has it memorized.  But it must be done correctly, eyes beginning on the first letter of the first word, including every letter of every word as the the eyes move from left to right to the next line...The he quickly glances at the flashing lights on the clock that ticks away the second, adding another dimension to the compulsive ritual...He is prohibited from seeing the actual flash but focus on the clock between flashes.  Then he returns to the page for round five of this sparring match with clock and book...It is touching an object with his right hand, and then forced by an eerie feeling duress to touch the same object with his left hand, then repeating that ritual time after time until his body tells him, "That's enough, I'm satisfied."'  (Don't Think About Monkeys, 1990, Hope Press)  As a therapist (with TS and OCD myself) , I learn a lot by joining in a clients's world.  I ask. "Teach me your disability, teach me how to read or do math so slowly" and then I learn how people like Adam and Richard do math or reading so "slowly" and am struck by the irony:  To an evaluator or diagnostician, these persons would be deemed "learning disabled" while, in reality, they are doing things with numbers and words in their heads that the evaluator could never do and surpass the evaluator in cognitive ability.  Generally, I find persons with TS and OCD to be highly perceptive, intelligent, sensitive, engaging and awesome thinkers.  All gifts to be acknowledged and used in some way.

        During a series of lectures to high school students on basic neurology, I began a class with: "We have been learning what neurotransmitters do in making our lives work. Now I want to consider some of the ways they get in our way. Sometimes they bring people lots of hassles and pain." Attention was interestingly high. "Did you ever find yourself in a bad mood when you had no reason to be? Or said or did things that surprised you and wondered why you did it and yet couldn't stop doing it? In fact, the effect of neurotransmitters that aren't quite in synch can be so weird that some people find themselves hitting one arm to even up the other that may have touched something, or checking to see if their alarm clock is turned on ten times even though they know it is..." I provided only a couple minutes of deliberately scattered and diverse examples and witnessed three students' eyes popping wide open and three others already had their hands up in the air. We had a good report from previous lectures but the class was only five minutes old and the first student was now excitedly sharing how she had to constantly hit her good arm whenever the arm in her cast felt itchy to "make it even". The second student candidly explained how she had to fold her freshly washed clothes over and over, "at least 10 times", until she could feel right in putting them away. The first girl quickly followed with a story of how, when she cut herself by accident on several occasions, say on the hand or leg, she had to deliberately cut herself on the opposite limb to provide the right balance. A boy explained how he had to open and close the car door at least three times before being satisfied and often "got stuck" in doorways. I asked them if they had ever told anyone else about all this and they responded that it was the first time and due to the rapport we had and the casual banter in which the discussion was framed. A second class at which I was scheduled to speak responded with similar and compelling stories to my same opening.

        This was six years ago, when I first began speaking publicly on TS and OCD, and this experience has been repeatedly encountered since then. But at that time I felt astounded. 1 knew the research data but now was staring into the eyes of human beings. Instead of percentages I saw the pained faces of people. I was struck by the numbers in a heterogeneous group that would feel the courage to come out of hiding... 3, 4, 5... articulated admissions of OCD related symptoms in every group of 20 students? My heart was empathically weighted when I think of what these young adults are not saying! What is the extent of their stories and their impact on their lives? And now what? Any of those students disclosing to their guidance counselors symptomology which may affect behavior and academic performance may well garner a cold stare. Generally, counselors and educators need education, but in a context of great respect for the students' privacy and readiness.

        Many graduate classes in psychology and counseling will teach a prevailing paradigm that OCD is a defensive response to reduce anxiety. Let me suggest that many expressions of OCD are spontaneous, unprecipitated by stress (though stress, both positive and negative, can exacerbate the symptoms), and most likely the anxiety and OCD response to it are both biochemically triggered. In a study of 93 twins, concordance was recorded in 70 percent of identical twins and only 15 percent in fraternal ones. All these twins lived separately and were not aware of each others' symptoms, yet the OCD started at their same ages and developed a very similar course. (McGuffin, P. and Mawson, D. (1980). Obsessive-compulsive Neurosis: Two Identical Twin Pairs. J. Psychiatry 137:285-287.) Another study reported 25 percent of OCD patients had a parent or sibling with the disorder. (Swedo et al, (1989). Obsessive-compulsive Disorder in Children and Adolescents. General Psychiatry 46:335-341.)

        My own life with TS and OCD was quite different as an undergraduate college student from my years as a graduate student in studying counseling. My pre-school and elementary years were characterized by contusion and ingenious ways to rationalize my behavior to others and spiritual ways of trying to understand and manage it. By the time I entered high school and continued into college, I had self-diagnosed and maintained a partial understanding of the biochemical etiology, but my hinting at having the disorders of TS and OCD only brought cold reactions, misunderstandings and accusations of rationalizing my "nervous" condition with a fancy psychobabble term. Much of the symptomology I could not express out of fear of sounding off the wall and noncredible; while some could swallow the explanation for muscular twitching, it would be difficult for them to appreciate and believe that the need to reopen a letter to make sure the check was signed was a result of biochemistry and not neurotic worrying or self-doubt!

        It was during those years I used my body and mind as a laboratory for experimentation and studied the martial arts, gymnastics, meditation, prayer and healing ceremonies, philosophy and psychology, hypnosis; I fasted, went on vision quests, did fire walks, climbed mountains and rappelled cliffs, consumed herbal concoctions and downed amino acid and psychoactive food supplements. I pushed body, mind, spirit and learned much (and later turned some of these pursuits into business endeavors.) TS and OCD had the edge taken off and, despite the pain and struggle, I would manage. But I still saw the disorders as enemies to be held at bay. I had walked through physical fire but not the fire that burned at the core of my inner world.

        Then I entered graduate school and in my second intro class the prof mentioned a TS client. Why was it so difficult to take him aside and tell him I knew something about TS, namely me? But I did and soon after attended a support group meeting and viewed video tapes of people like me and cried at the similarity and familiarity. Within a year I had published my own biographical sketch in the book Adam and I co-edited and was openly lecturing about the disorders, my life with them, and appreciating that I was gradually embracing my disorders as friends who provided me with a window into understanding on both a cognitive and heart level a lot of the mystery of human behavior beyond that of TS and OCD, about soulfulness in connecting with humans, about forgiveness and love and embracing the Creator and moving ahead on my mission/journey.

        In his wonderful book, Care of the Soul: A Guide for Cultivating Depth and Sacredness in Everyday Life, (1994), psychotherapist Thomas Moore writes, "The Greeks told the story of the Minotaur, the bull-headed flesh-eating man who lived in the center of the labyrinth. He was a threatening beast, and yet his name was Asterion – Star. I often think of this paradox as I sit with someone with tears in her eyes, searching for some way to deal with a death, a divorce, or a depression. It is a beast, this thing that stirs in the core of her being, but it is also the star of her innermost nature. We have to care for this suffering with extreme reverence so that, in our fear and anger at the beast, we do not overlook the star." When attention is paid to the full spectrum of TS and OCD expression, we find people who are sensory sensitive, who think on many levels simultaneously, who feel on many levels simultaneously, who visualize the unseen burning coals beneath the campfire logs, who think of trees when eating applesauce, who are overwhelmed and get stuck and thus wish they were brain-wired "normally" and who, although do not have a choice of whether or not to have the disorder, do have a choice of whether to own and walk right into the center of it. Choice is power. Choice is also an acceptance of responsibility: response-ability; the ability to respond creatively and to not choose victimization. That journey is not easy. The journey of a thousand overwhelming miles does not begin with the first step. It begins with the first thought, obsessive or not.

John S. Hilkevich, Ph.D.

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