Wednesday, August 3, 2011

Being Diagnosed with Tourette's and my parents' reaction

It was a Wednesday, Febuary 23rd, 2011 to be exact and I was sitting in the office of the head of a prominent university's movement disorders clinic with my parents on either side of me waiting for the neurologist to tell me what I already knew and what I knew my parents dreaded. I shook slightly from nerves and tried to explain clearly through my dry mouth, my obsessions, compulsions, and tics. I even demonstrated, per request, one of my vocal tics that sounded just slightly off from a hiccup or a squeak. Thoughts ran rapidly through my mind as the doctor tested my reflexes, asked me to follow his finger from left to right, and had me walk toe-to-toe in a straight line, a task I could hardly complete without tripping thanks to my nervous shaking which elicited the all too familiar “boy you are nervous” comment. I had received this comment more times than I could ever begin to count along with the all to familiar "are you okay?" comment.  I thought about how my parents would react after hearing it from the neurologist. Would they get angry? Cry even? I thought of my mother’s words from two months before the appointment, when I first told her that my nervous habits were called “tics” and that my psychologist who I was seeing for my OCD thought it was Tourette’s syndrome. These words are still with me today and remind me how far my parents and the people around me have come in terms of acceptance and understanding: “Having Tourette’s is like being in a wheel chair, Ruthie. Those people bark, shout, and swear. You don’t have that, it must be something else”. Near the end of the appointment when the neurologist confirmed my parents’ fears and told us that the kinds of things I was explaining, my history of tics, obsessions, and compulsions did indeed indicate Tourette’s syndrome, I found that my idea of my parents’ reactions was not too far-fetched. My parents now knew that you didn’t have to bark, swear, or shout to have Tourette’s, and that in fact most people with Tourette’s only had the kinds of tics that I have, things like eye movements, air swallowing, arm and hand jerking movements, sniffling,  squeaking sounds, and muscle tightening. However even though they knew these things, they still reacted with fear and the need for absolute silence about my diagnosis.
                Per my parents’ requests, no one could know that the neurologist had diagnosed me with Tourette’s syndrome, a neurological disorder characterized by multiple motor tics (involuntary movements) and at least one vocal tic (involuntary sounds), at least not until we really thought about the effects that telling others would have on my future. In the doctor’s office my father had told me that if people knew that I have Tourette’s, doors would close for me, people would discriminate against me, and worst of all even my closest friends and family would no longer accept me as a regular teenager. In my father’s mind, telling others about my condition would be the end of my chance for normal relationships, a normal career, and a normal life. Although hearing this from my father, what I interpreted as his equivalent of saying that I would never be accepted for who I truly am and would have to hide forever behind the fear that my diagnosis held for both my mother and him, I refused to believe that his perception was the truth. I refused to settle for fear, denial, and self-rejection. 
     I knew it was my responsibility to show my parents they were wrong, because I knew deep down that they were. It was my responsibility to prove that people would not discriminate against me and refuse to accept me. I would not hide behind this diagnosis my whole life in fear that someone might find out, I would not let it have this much control over me and my life. My parents agreed that telling my friends and classmates that I had tics without mentioning the diagnosis Tourette's Syndrome was necessarily if I was going to come out of high school with any kind of mental sanity. I was so fed up with other people's comments. "Are you okay?" "Why are you doing that?" "What was that?" and even the occasional "Do you have Tourette's or something?". My friends were starting to wonder more than anyone else and I felt so bad lying to them and brushing off their comments. My friends seemed to be okay with my tic explanation when I explained. It was better than saying nothing at all I guess. But I was still hiding from the diagnosis; I was still prisoner. 

More of the story is coming! That's not the end! The rest will come soon, I promise. 


A post that I forgot to post! One awful SAT class...

Here is a post that I wrote a while ago but forgot to post. The SAT class took place sometime in September before my official diagnosis.

A three hour SAT class. One teacher, four students, my best friend, Tie Dye Socks, (obviously not her real name) sitting next to me, three hours of trying to suppress my tics, and I knew it wasn’t possible. I knew I couldn’t hold back for three hours, not in such a small room feeling like everyone was looking at me, especially Tie Dye Socks. No one had seen my tics at  their worst and that made them come fast and hard. Tie Bye Socks called to me from across the room as soon as I walked in the door. She wanted me to sit next to her; of course, so I slowly sat down in the desk next to her, took out the SAT book filled with all my doodles and scratches, and began to fight the relentless urge. At first it was just uncomfortable, but after a few minutes I began to suffer in that unbearable way that always comes with suppressing my tics. Imagine an itch on the bottom of your foot. In the beginning it’s just a little itch and maybe you can ignore it at first. Now image that with every minute that you resist scratching it, the itch gets worse and worse and worse. What started out as a little itch now feels like fifteen or twenty itches all in the same spot, all on the bottom on your foot. And now that itch spreads, that insufferable itch climbs up your legs, works its way through your arms and solders, to your eyes, to your mouth, until there is nothing else, nothing else in the entire world besides that agonizing itch. That is what It feels like to have Tourettes and to suppress it. It doesn't feel like an itch in the since that it's that itchy feeling we all know but it feels like an itch in the since that I have an urge to do something (tic), I know what I need to do to get rid of the feeling, and its soooo hard and unbearable to ignore it and try not to "scratch".  I gripped my pencil so hard that I thought it was going to beak, buckled my knees, and tightened my muscles as hard as I possibly could. I began to run my nails, hard, against the palms of my hands and I couldn’t hold back any longer. I just couldn’t. I rolled my eyes up to the corners and it was like I was an alcoholic sticking their tongue in a glass of blood red Merlot. There was nothing else besides that need to tic, nothing else, nothing else. I had no choice, so I released the pencil I had been gripping, unbuckled my knees, loosened by muscles, and let it out. I began to tic and tic and tic and I told myself I didn’t care. I didn’t care what they all thought because I didn’t have a choice. I had to give in.  
            “Excuse me. Do you have a question?..........Excuse me; I said do you have a question?” I didn’t even realize that Stupid Potato Farmer SAT Teacher was talking to me. I bucked my knees again.
            “Me?” I asked.
            “Yes you, the one making all the strange movements over there.” He was talking to me, and the strange movements he was talking about were my tics. My eyes rolled again.No one and I mean no one had ever said anything to me about my tics in this way, in front of an entire class and in such a way that had so clearly singled me out. They had never been as bad as they had been these past few months. No one had ever addressed them so openly, so matter of factly as if I was the kid in the back of the classroom sharpening her brand new pencil as the rest of the class was trying to listen to the teacher. As if I was the nuisance, the distraction, the one who had to stay inside while the rest of the children went to recess.
            “No”, I whispered almost inaudibly.
            “What did you say?”
            “No, I don’t have a question”, I said a little louder and Stupid Potato Farmer SAT teacher gave me a snide look and went back to teaching his lesson. I wanted with my entire being to punish him somehow, to tell him how ignorant he was, how I couldn’t help it. Then it hit me; I needed something to say to him, and to anyone else who asked in the future. I needed something to explain these “strange movements” as the teacher called them. I needed to know why I couldn’t control my own body, and my own mind. 

Passing for Normal! Read it!

Hello blogging world! I know I haven't posted in a long time but I've had a pretty crazy summer! I just wanted to make a short little post today about a book I just read called "Passing for Normal". It was a GREAT book about TS and OCD and if you have either of these conditions or just want to know more about them you should definitely read this book. It's written by an author named Amy Wilensky who has both Tourette's and OCD and writes about her diagnosis of the conditions which occurred in her late 20's after she had lived with both conditions almost all of her childhood. It's a great read, bursting with meaning and insight about the conditions and about life in general. Amy has a great voice which shows clearly though her writing! Thank you Amy for putting your story out there for all of those people with TS and OCD to read and relate to and to educate those people who don't know about these conditions. More to come soon about my oh so busy summer. In fact I may just follow up this post immediately with some posts about summer with TS and OCD. :)