I was recently at a comedy performance that included a remark about Tourette Syndrome. It brought up a lot of painful feelings along with the desire to write about my experiences. I hope that by writing about my experiences with Tourette Syndrome (TS), I can offer some understanding about what it is like to live with it and therefore personalize it such that it seems more real and understandable, rather than just an odd assortment of movements and vocalizations. It is easy to notice the movements and vocalizations and find the humor in it; even I can understand how it may seem funny. Many of the people in the audience at the performance laughed at the comment about TS. I laughed at a comment about narcolepsy from another performer. When something seems far enough removed it can be funny just looking at the surface behavior. However, when understood through the vantage point of personal experience it is not always as funny.
I have no desire to be the political correctness police. I do not feel like I am in the position to judge anybody. However, at least in regards to TS I have something to offer from personal experience that I hope will add to your understanding, offering the opportunity for a more holistic response in the future. The more we can see beyond the behaviors of TS to remember the human factor, the more we will understand that we are all connected and all impacted by how we respond to the health and other concerns that challenge us. I also realized based on how I responded to the performance that I still carry around a lot of emotional “charge” regarding my experiences with TS and I hope that by writing this article I can experience deeper emotional healing and peace.
While there are benefits of sharing my story, I am also hesitant for several reasons. First, as someone with noticeable involuntary body movements (also known as motor tics but I prefer the term body movements), I have spent my life standing out from everyone else. Everywhere I go people look or stare at me (or try not to) and the last thing I want to do is bring more attention to my body movements. Second, I have shared many of the painful memories with friends, family, therapists and so many specialists that I do not always see the benefits to sharing it all again; I want to focus on the good in my life, rather than continually rehash all the pain I have been through. Third, after all that I have been through, I am not always trusting when it comes to sharing things that make me feel vulnerable and open to being made fun of even more. I know that you are all adults reading this but painful experiences have left their mark and I still have fear of getting hurt if I open myself up too much. Yet because I know the benefits of sharing my story, I will do it again hoping it will do some good.
My first experiences with TS began when I was six years old (I was not diagnosed until I was 13 so there were many years of movements with no understanding of why). I had just started kindergarten and I would blink my eyes a lot. My teacher noticed it and mentioned it to my parents who also had noticed it at home. Since the adjustment to school is often difficult for kids, it was assumed that I was having adjustment difficulties. However, after I had been in school for some time and the blinking continued, my parents started what would be years of trying to figure out what was wrong with me. I am not sure if they would word it as “what was wrong,” but as a kid that was how I felt.
I saw what seemed like an endless number of professionals starting with the more conventional options like my pediatrician, to the child therapist and even a hypnotist. None of them had any answers. I remember my sessions with the child therapist because he always had me make dolls out of toilet paper rolls, despite the fact that it was an activity for much younger kids. I hated those sessions. The therapist told my parents I was childish, and I sarcastically thought it was because all we did was make dolls out of toilet paper rolls. I was glad when the therapist blamed my movements on my parents and they angrily stopped my sessions with him. I also remember the hypnotist who had me focus on not moving my left hand while later pointing out that the entire time I was focusing on not moving my left hand, I had not been thinking at all about my right hand and it had remained still. I felt angry and tricked and was not sure how that was of any help for me at all. If I could stop the movements I certainly would. My life was a living hell.
Kids, as you know, can be really cruel to each other and I was often the target of cruelty, both physical and emotional. After my dad saw me being beat up by kids in the neighborhood he taught me how to fight. I was good at it and after that at least nobody tried to fist fight with me (this was in the days before guns and knives). While I do not advocate violence as a way to deal with violence, it ended up being helpful for me back then. The physical attacks stopped but the emotional attacks continued. Emotional pain was a constant in my life every time I left my home (and in my home too but I will get to that later) yet a few experiences in particular stand out as especially painful and I will share them here.
I was in sixth grade and the two six grade classes in school were putting on a play together. Everyone was required to audition for the play. The last thing I wanted was to be up on stage with everyone watching my movements. I decided that since I had to audition, I would audition for the smallest part in the play, which is what I did. Unfortunately I was a good student with a gift for memorization and I memorized those few lines so well that I was considered the best person for the lead role and that was the role I was given. I had learned from experience that when I was under stress my movements increased. I knew having the lead role in the play was not a good thing for me and I begged my teacher to let me have a smaller part but she did not listen. Needless to say a week or so before the play my movements had increased so much that the teachers were concerned about how I would come across on stage and they took away my lead role and made me take the role I had tried out for in the first place. Everyone wanted to know why I changed roles and I had the humiliating experience of having to explain, and of knowing that the decision was based on my appearance.
I should also add that the movements, when repeated over time lead to internal injury, repetitive strain and physical pain. There are as many movements as there are ways that the body can move. If it can move, it can be part of a TS movement. Sometimes there is only one movement, other times more than one. The intensity also varies along with which body parts are affected and how long it will stay with any particular body part. The blinking of my eyes left me feeling disoriented and nauseated from the disorientation. The movements of my neck and head gave me painful headaches that lasted for days and even sometimes weeks. I had so many migraines that I spent much of my school days throwing up from the nausea. I have a picture of one time that I stayed in class during recess because I had thrown up. My mom had the picture because she thought it was cute and did not realize that I was sick when it was taken. I guess I spent so much time with headaches that it was hard to realize that the pained and pale look I had was not my natural look.
In addition to the physical pain already mentioned, the movements in my feet made it painful to walk, and all the movements over time were part of the reason I had severe back pain episodes that left me unable to move without agonizing pain. These episodes would last for weeks. It was because of the pain that I tried and became familiar with many alternative healing approaches such as massage, chiropractic, yoga, cranial sacral therapy and my favorite, orthobionomy, which I highly recommend for anyone suffering from severe chronic pain. I have many memories from all these approaches but one in particular stands out from a massage session. I remember the massage therapist telling me that my neck muscles were so strained that she was not sure how I was able to hold my head up. This happened when I was in my 20s so imagine what 20 plus more years has done to my body and you have an idea what it is like to live with the pain from TS. I experience some degree of pain and/or discomfort all the time. I also have damaged my inner ear and also my eyes as a result of the continual movements of my head, neck and jaw. Flexibility is a challenge for me.
Going back to some of the emotionally painful experiences from my childhood, the most difficult one by far happened when I was in eighth grade. It was lunch time and as I walked into the school cafeteria every single kid in the cafeteria mimicked my movements. I felt totally alone and trapped. There was nowhere I could go to be alone and to make it stop and it seemed to go on and on forever. I will never forget it. I am not sure why none of the adults in the cafeteria stepped in to do anything, but then again my sixth grade teacher did not help me either when I asked not to have the lead role in the play. The adults who supervised activities during recess were not very helpful either. Every school had their pecking order among the kids and I was the one at the bottom, at least until there was a new girl who did not talk much other than to shriek and hit people with her purse. I know this sounds mean, and it is, but I was grateful for her.
I was a very good student with excellent grades. The Junior High School (or Middle School as it is called in New England) grouped kids based on academic performance. Each group of kids took all their classes together and became a somewhat cohesive group. Although my grades were excellent and I should have been grouped accordingly, the school administrators and my parents still thought my movements might be related to adjustment problems and so rather than risk my having adjustment problems in the group of kids who were at the same academic level as I was, I was placed in a different group of kids, only to be moved later when it was determined that I was not being challenged and that I had the movements anyway. Joining an already cohesive group was difficult for me emotionally, made even more so because I had told my parents that my movements were not related to adjustment problems and because the kids in both groups already knew why I had been “held back.”
Nor were things any easier at home. My parents wanted me to be “normal,” so that things would be easier for me. While I now understand the reasons behind their actions, much of what I went through at home was very painful for me at the time. When my parents gave up on all the doctors, psychologists, etc. they were replaced by what my parents called “exercises” but were actually periods in which I was supposed to stop the movements and be still. I think this idea might have come from my experience with the hypnotist. Regardless, one of the things about TS movements is that they can be held back for a short period of time but they will always need to be expressed eventually. The only time I do not have movements is when I am asleep, in deep meditation or when I am absorbed in whatever I am doing. It is an odd irony that I have involuntary body movements yet I can be so into doing a healing session for someone else that the movements cease, or that I have odd looking facial movements that I know are a physical turn off for some potential lovers yet I can kiss for hours with no problems. I definitely have a strong sense of humor and irony and I know that TS has played a part in it.
Anyway, of all my painful memories, having to do the exercises was one of the more traumatic. I think it was because it reminded me that there was nowhere in my life where I was not under scrutiny, where I could just be okay the way that I was. I knew I had no control over my movements and it hurt me that even my own parents did not listen to me when I told them that. After a while I refused to do the exercises and my parents gave up. I understand now the pain my parents must have felt and their desire for me to have a happy and healthy life, which was the reason behind the exercises. I try to keep in mind that TS impacted my family as much as it did me, just in a different way. This has helped me to be more forgiving.
I also understand the reactions many people have towards someone who looks or acts different. We all want to fit in, yet we want to be unique individuals too, just not too unique. As kids we learn about ourselves from our attempts to be part of the group. I am not sure there are any kids who feel free from the fear of being judged and excluded, which is probably why kids often act in the hurtful ways that they do. As someone who has been on the receiving end of a lot of hurtful acts, I have learned a lot about human nature by observing people’s responses to me and my responses to their responses. In many ways adults are just as insecure as kids, they just respond differently, less overtly, yet adults face the same dynamic of trying to fit in and have the same fears about not belonging. To belong is to give and receive love and to feel connected to others. Sometimes I wonder if I am some kind of mirror that via my movements I can see the best and the worst in human nature. If so, I want my goal and my process to be one of compassion.
At age 13 my aunt saw a public service announcement about TS on television. She thought that the movements looked a lot like mine and she told my parents. A visit to the neurologist confirmed that I had TS. I have what is considered a mild case and I have no involuntary vocalizations (also known as vocal tics). It is considered unusual to have TS with no vocalizations. A lot of kids with TS have other learning challenges, which I was also fortunate to not have.
There are several forms of treatment for TS, the most common one being medication. I tried several different medications which I ruled out for various reasons. One medication made me so sensitive to sunlight that I was supposed to limit my outdoor time to 20 minutes a day, another medication made me urinate constantly. I ended up taking Haldol. Haldol is often prescribed for psychotic people to control hallucinations. However while they may take hundreds of milligrams daily, I took less than three milligrams and it worked quite well for me. It reduced the movements about 80 percent, allowing me to live a very normal looking life. Most people barely noticed the movements and would probably not have known about my TS unless I told them. I took Haldol for 20 years and stopped only because I wanted to have a child and Haldol is toxic to the developing fetus.
I ended up not having children but by then I had also developed an interest in energy medicine and as my studies and embodiment of energy medicine continued, I realized that taking a chemical into my body, especially one as toxic as Haldol, was no longer an option. I was fortunate the first time to stop taking it and after 20 years not have any permanent side effects. It is almost unheard of. I did not want to take the risk of trying again.
My search for a permanent cure continues. A few years ago I met someone who uses bio feedback with excellent results. However he uses it as a form of treatment, not as a cure. My work has me very curious about the causal level of health challenges and I am much more interested in something that resolves not only the symptoms but also the cause so that symptom management is not necessary. I truly believe I will find the healing that I am seeking and that energy medicine holds a lot of promise for me. I am also interested in neurofeedback and intend to have some sessions as soon as I am able. In the meantime I continue to learn from my experiences with TS. I have learned a lot from my emotions and thoughts about myself and others and I have also learned a lot about healing and pain relief. I have learned a lot about compassion towards others and myself, although I am still learning and often feel like I have a long way to go. From TS I have developed a sense of humor and an appreciation of the contradictions in life. I know what it is like to long for physical comfort and not find it anywhere. Being at home in my body has been a lifelong challenge, but perhaps it is part of my interest in embodied spirituality especially in the sensations of pleasure as a spiritual path.
I enjoy the fact that I can feel pleasure along with the pain, that I can feel fluidity in the tightness and promise in what many people would consider incurable. Although the responses of other people towards my movements and towards TS in general is often emotionally painful for me, it has also taught me that people do a lot of things from fear and/or lack of information and that as a result I can be less attached to their responses and can even feel the loving person underneath it all. I can also serve as a reminder that whatever presents itself on the surface is nothing compared to what we make of it. The depth and breadth of the human spirit is amazing and life is good.
I wish to thank the comedian for the comment about Tourette Syndrome as it provided me this opportunity for healing and for sharing this article with you. I also appreciate his sensitivity, integrity, honesty and openness when I talked with him about how I felt. I hope that he and everyone else who reads this article will find it helpful.
With love and compassion,
Linda White Dove
http://www.lindawhitedove.com
