{"id":2199,"date":"2013-04-05T07:30:07","date_gmt":"2013-04-05T11:30:07","guid":{"rendered":"https:\/\/njcts.org\/tsparents\/?p=2199"},"modified":"2013-04-05T07:30:07","modified_gmt":"2013-04-05T11:30:07","slug":"conditional-corner-a-tourette-testimony-part-2","status":"publish","type":"post","link":"https:\/\/njcts.org\/tsparents\/conditional-corner-a-tourette-testimony-part-2\/","title":{"rendered":"Conditional Corner: A Tourette testimony, part 2"},"content":{"rendered":"

Conditional Corner is a series that runs Fridays on TSParentsOnline. All stories, including this one by “Garry”, were originally published at Conditional Publications<\/strong><\/a>. Read part 1 of his testimony here<\/strong><\/a>.
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In 1989, when I was 18, Johnny Davidson from Scotland became the first person with Tourette ever to be featured on British TV, in a prime-time documentary. \u00a0Coincidentally, it was on at a time when a lot of my friends were at my house for the evening.<\/p>\n

I\u2019d never heard of this Tourette word before and probably couldn\u2019t even pronounce it properly. \u00a0My friends were all laughing and hooting at the things he was doing and the noises he was making and the swear words. \u00a0I remember one of my friends saying to me, \u201cHey Gal, that\u2019s what you do,\u201d and a few of them laughing at me.<\/p>\n

Then my mum came into the room when Johnny was eating with his family and had a spitting tic. \u00a0My mum said, \u201cThat\u2019s nothing, Garry was worse than that when he was a kid.\u201d \u00a0Funnily enough, it still was never mentioned to me by anyone \u2013 not my\u00a0family, not my friends, nobody \u2013 and was left like that for years. \u00a0And I still have not mentioned it to them now.<\/p>\n

Years later, I looked at a few websites and started reading up on Tourette, so much that I once again began to obsess about it and couldn\u2019t get it out of my mind. \u00a0I kept it like it was my dirty little secret. \u00a0Then I finally went to my doctor to see what I needed to do and where to go. \u00a0I\u2019d read all I could about a TS diagnosis and was sure I had it, but was worried that they would say no, it was something else.<\/p>\n

My doctor seemed completely fine about it and said he had a friend who was a neurologist and dealt with\u00a0Tourette Syndrome on a daily basis. \u00a0Things then became confusing for me. \u00a0I had what I had suspected for a\u00a0long time, but should I generally tell people or not?<\/p>\n

The tics had actually faded with age, and everyone knew me as who I was, so why should I tell them something now that may upset them, or start the ridiculing again? \u00a0And I worried that with meeting new people, there is such a huge stigma attached to Tourette, they would just assume the worse about me.<\/p>\n

I discovered social networking and started to use Facebook a lot. \u00a0I even found there were groups of people with TS openly talking about the subject on there, so one night I joined an American-based TS group and started to open up for the first time in my life. \u00a0It was nice, as I didn\u2019t know any of these people or have to talk to them face-to-face, and I soon felt relaxed, as their stories and problems either outshone mine or were the same.<\/p>\n

Very slowly, I also started to tell\u00a0my closest friends at work, those whom I could trust, to gauge the reaction I would get. \u00a0 Some said they\u2019d always\u00a0known I had a twitch but that was just me, and no I was wrong, I didn\u2019t have TS, it must be a mistake.<\/p>\n

Others I could never tell, as the subject would be just too outrageous in the testosterone-fueled and piss-taking environment the stresses of my job create. \u00a0So for me, I have always been happy not to tell unless asked, and then scrutinize and check, then check again who I was going to\u00a0\u2018come out\u2019 to.<\/p>\n

More recently, and after talking to many people online with TS, I began\u00a0to get invitations to meet up with other ticcers, but I always put it\u00a0off. \u00a0I just couldn\u2019t do it. \u00a0I was fine to talk about this openly in\u00a0written form, but to someone else face to face! \u00a0What if someone at\u00a0work found out, or a member of my family? \u00a0Part of me still had this\u00a0underground ashamedness of it all that I felt as a child.<\/p>\n

Now this will sound a bit crazy but a few people that I was talking to online back then almost became like celebrities to me every night. \u00a0Wow, they were real-life ticcers, just like Pete Bennett, not an\u00a0e-mailed conversation from halfway around the world or a newbie like\u00a0me.<\/p>\n

They were in my own city and living with it and telling me I could\u00a0also, and to get myself out and meet with people. \u00a0But I didn\u2019t. \u00a0I still\u00a0put it off and off and off again, until November 2009 when\u00a0I jumped on the train and went to Victoria Station in London to meet\u00a0my online TS mentor and very first other person I\u2019d ever meet with\u00a0Tourette Syndrome.<\/p>\n

We met in a pub and then went across the street to meet up with\u00a0several other people and to spend the afternoon and evening all\u00a0together. \u00a0It was crazy, I just wanted to take notes and ask a hundred\u00a0questions. \u00a0These guys had all known each other from before, some\u00a0for years even.<\/p>\n

My initial reaction was that I felt like a fraud; it\u00a0was obvious that TS affected people in many different ways as far as\u00a0tics were displayed and some were much more advanced than me in this\u00a0field. \u00a0I was suppressing my tics still for some reason, probably as\u00a0they were still strangers to me really and new people.<\/p>\n

I was scared\u00a0and felt like I wasn\u2019t part of this group really as my tics were not\u00a0as bad as some and, like most of the medical information I had read\u00a0stated, TS can ease over time and obviously had for me. \u00a0I felt\u00a0really guilty because of that.<\/p>\n

After sitting and talking to people I realized that I was the same, I\u00a0was very much part of this thing and began to really enjoy myself. \u00a0What was the worry, why had I been so scared to talk about Tourette in the first place, then scared to meet up with people who were\u00a0basically more of an expert about it than any Doctor, or book I had\u00a0read?<\/p>\n

These were real-life people now sitting and having a beer with\u00a0me, who had experienced exactly the same as me throughout their lives. \u00a0The connection was unbelievable and also very emotional for me, so\u00a0much that after a few hours I made my excuses and left.<\/p>\n

I cried on the way home, like men do in\u00a0Hollywood films, just wet eyes and a solitary tear on one cheek. I had been accepted and I was now out of the TS closet. \u00a0Over the next\u00a0week I told several people that I had Tourette. I even found myself\u00a0bragging about it in some circles.<\/p>\n

Since then, I have told more and more people and met up with my friends\u00a0even more, some individually and some as a group. \u00a0To me they are not\u00a0just friends, though; they are family I never knew I had. \u00a0Just like\u00a0if I was adopted as a child and then met up with my real family years\u00a0and years later \u00a0\u2013 \u201cThis is your sister, this is your uncle, this is\u00a0your older brother.\u201d \u00a0We have so much of the obvious in common, it\u2019s\u00a0remarkable. \u00a0So thank you, ladies and gents, for kicking me up the\u00a0backside and dragging me out of my shell.<\/p>\n

Today, I am the guy who is still apprehensive about telling people I\u00a0have TS straight away, but I like to tease them. \u00a0I wear a Tourette badge on my tie at work that is large enough for people to\u00a0need to ask what the hell it is, and even when in conversation and I\u00a0suddenly interrupt someone I will apologize and blame it on my ADHD,\u00a0or if I am being told a story like I was today and got bored after 10 seconds, I will tell them to hurry up as I\u2019ll be walking away in two\u00a0seconds. \u00a0Then they come back and ask what I meant and I tell them\u00a0the whole story, and of course they say, \u201cBut you don\u2019t swear and\u00a0shout\u2026.\u201d<\/p>\n

So this is my story and this is me now today. \u00a0A tall good-looking guy who\u00a0likes a drink and a wink, with a major neurological co-morbid\u00a0disorder called Tourette Syndrome. I finally made friends with it. : )<\/p>\n

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