Having the onset out of the blue was was really freaky to me, and made life suddenly very weird.  I had these evolving tics that would come and go in frequency and magnitude.  I don’t think I could have hand picked a more understanding and helpful family to get me through this time.  My mother was there every step of the way, driving me around to various doctors and doing a lot of her own research online.  My father and sisters were completely understanding and very supportive, even my sister who was only three years old at the time!  They helped me keep the optimistic attitude I had always had in my life until that point.  I began twitching in June and was finally diagnosed in December.  As soon as we figured out what it was, my first questions centered on what I would be limited in doing by having this disorder.  When the doctor told me it probably wouldn’t limit me at all, I set my sights back on the goals I’d had my whole life.

After a couple years, I joined the United States Air Force.   I had obstacles to overcome due to having TS, but I conquered those.  I was told by a few people that I could not be a good Airman with TS and that I should get out of the service.  I proved them wrong by excelling in my military training, working hard to become a leader among my peers and being recognized as the Airman of the Year for my unit.

After completing active duty military service, I realized another childhood dream: I began a career as a fire fighter for the city of Little Rock, AR.  Once again I worked hard, focused on training and studying, and was recognized for excelling in my training.

I have also begun a beautiful family since being diagnosed.  I was initially worried about dating women when I began twitching, but quickly overcame those worries when I began dating and used my TS as a conversation starter.  I met my wife and a year later we welcomed our first of two beautiful children into this world.  Even though my daughter sometimes copies my tics, and laughs at me from time to time, I wouldn’t trade her or her brother in for the world.

Prior to my diagnosis, I was a goal-oriented, optimistic young man who wasn’t afraid of what the world thought.  After twitching and learning to live with TS, I returned to being that same young man. Having a neurological condition is just another hurdle in the race.  I use TS to educate others and I also make people laugh with it.  I still set and chase goals, I am still overly optimistic and I still do what I know I can, even with TS, and I don’t let others dictate what I can and can’t do.  Having TS has changed me in the fact that I more or less can’t sit still anymore, but that’s the only way.  Life threw me a curve ball and I hit it out of the park.

If you have a story to share, please contact us here. We don’t mind if your story is inspirational or simply a way of getting things off your chest.  We proofread all stories, but we censor nothing.  And if you want to make sure you don’t miss out on the stories other brave people share with us, be sure to click the ‘Subscribe’ button at the top-right of this page.

]]> https://conditionalpublications.com/2015/01/01/when-life-throws-you-curve-balls-a-personal-account-of-tourette-syndrome/feed/ 1 https://conditionalpublications.com/2014/04/25/diagnosing-tourettes-in-kenya-a-personal-story/ https://conditionalpublications.com/2014/04/25/diagnosing-tourettes-in-kenya-a-personal-story/#respond Fri, 25 Apr 2014 08:26:53 +0000 http://conditionalpublications.com/?p=1894 I have a 9-year-old son who was recently diagnosed with Tourette’s Syndrome. We are from Nairobi, Kenya. It took the earth to correctly diagnose this condition, as nobody in Kenya seems to know about it.

After seeing 13 doctors, doing a myriad of tests and being given several different diagnoses, we were forced to travel to the US for further diagnosis. On reaching the US Neurologist’s office, we were properly diagnosed within the first 5 minutes!

Our story is really one of the journey to discovering Tourette’s and managing an unknown condition in a country where there is limited support for ‘rare diseases’, as well as keeping the faith that we will all come out of this situation stronger and victorious over things that would otherwise cripple a family!

Editor’s Comment: Thank you so much for sharing this with us.  I think we in the ‘Western world’ probably take it for granted that we have access to doctors who recognise such conditions.  I wish you and your son the best of luck!  I have Tourette’s myself and know how hard it can be, but I like to think I turned out just fine in the end   Your son will, too!

If you have a story to share, please contact us here. We don’t mind if your story is inspirational or simply a way of getting things off your chest.  We proofread all stories, but we censor nothing.  And if you want to make sure you don’t miss out on the stories other brave people share with us, be sure to click the ‘Subscribe’ button at the top-right of this page.

My earliest memory of being told that famous quote (the one known worldwide to all young ticcers as they grow and their Tourette’s becomes more noticeable) – “STOP DOING THAT” – was by my Mum and my Nan in the kitchen on that lovely sunny day in the mid-1970s.

Everyone had longer hair then,  and even though I was only 5 or 6 at the time, I can still remember sitting on the counter, tilting my head back and looking toward the ceiling so the longer hair at the back would touch the back of my neck and the middle of my shoulders.  I really liked that feeling and for some reason wanted to do it again and again and again.  It was summer and I had my shirt off and it felt lovely on my bare back.  It seemed a really big deal to my Mum and my Nan, though, and they were discussing whether I needed a haircut – as if it would stop this new bad habit!

Then over time I’d do it at the family dinner table and got slapped on the wrist for doing it so much.  Then I did it at school and forever after, as well as other things such as constantly blinking and sniffing.  And yes, forever after I also got shouted at to “STOP DOING THAT”, especially when in the company of my parents’ friends or other family members.

In school, I never took part in things with the other kids and used to stand on my own in the playground at dinnertime in my own little fantasy world, staring at the clouds, trying to make friendly shapes out of them and wishing for home time to hurry up.

Then came the various noises – not words, but grunts and throaty stuff, and even louder and longer constant sniffing.  My most painful and prominent tic was rolling my eyes so much that they strained, and shrugging my shoulders uncontrollably.  I can remember being in the bathroom and being frozen solid, trying to make a certain sound with my throat by breathing in air (as if taking my last breath).  I couldn’t move until I’d done it.

I was pretty poorly as a child and my bronchitis, which I had suffered with for a long time, had also become bad.   I was spending more and more time away from school because I was quite ill.  The simplest common cold or virus went straight to my chest and I’d end up wheezing and spluttering for weeks at a time.  Maybe people thought the other noises were associated as well and blamed it all on the bronchitis?  I was on all sorts of medicine and had to use a couple different inhalers, but I can always remember there being more and more tablets that, for some reason, I only took at home.

I went through the next few years coming home and just wanting to sleep.  As soon as I got through the door, when I was about 12 or 13, my mum shouted at me to stop sniffing.  “Don’t your teachers say anything about that?”

Other things started to happen to me.  I used to pick up my dinner plate  from the kitchen, but couldn’t walk through the door until the two imaginary firework circles inside my head were going in the same direction.  You know how when you have ‘sparklers’ you hold them in the dark, move them around in circles, and on some cameras it comes out as a funny orange circle?   Well, that was now in my head and stopping me from doing things unless they were both going in the same direction, and sometimes it would be hard to make them do that.  It was actually such a strong impulse that I thought this part of me was normal, and didn’t everyone have to make the circles move at times?  It wasn’t until my final diagnosis that I discovered they didn’t.

I felt so ashamed about my twitching – so utterly, utterly ashamed.  I’d always shy away if it was mentioned or ignore the issue, or just run.  I could never talk to my friends about it and certainly never spoke to girls – at all!  Adolescence was the worst time.  The name-calling started and I found myself making up stupid excuses to explain why I twitched.  I’d say I was in a car crash and had an operation and it made me like this, so it wasn’t my fault, or other such stupid stuff.  I’d forget about the noises, or if I caught someone looking at me, I’d reverse them into a type of cough, which, due to the bronchitis, I seemed to get away with.  I became used to camouflaging my tics, and still do it to this day.

In 1989, when I was 18, Johnny Davidson from Scotland became the first person with Tourette’s ever to be featured on British TV, in a prime time documentary.  Coincidentally, it was on at a time when a lot of my friends were at my house for the evening.  I’d never heard of this Tourette’s word before, and probably couldn’t even pronounce it properly.  My friends were all laughing and hooting at the things he was doing and the noises he was making, and the swear words.  I remember one of my friends saying to me, “Hey Gal, that’s what you do,” and a few of them laughing at me.  Then my Mum came into the room when Johnny was eating with his family and had a spitting tic.  My Mum said, “That’s nothing, Garry was worse than that when he was a kid.”  Funnily enough, it still was never mentioned to me by anyone – not my family, not my friends, nobody – and was left like that for years.  And I still have not mentioned it to them now.

Years later, I looked at a few websites and started reading up on Tourette’s, so much that I once again began to obsess about it and couldn’t get it out of my mind.  I kept it like it was my dirty little secret.  Then I finally went to my doctor to see what I needed to do and where to go.  I’d 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.

My doctor seemed completely fine about it and said he had a friend who was a neurologist and dealt with Tourette’s Syndrome on a daily basis.  Things then became confusing for me.  I had what I had suspected for a long time, but should I generally tell people or not?  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?  And I worried that with meeting new people, there is such a huge stigma attached to Tourette’s, they would just assume the worse about me.

I discovered social networking and started to use Facebook a lot.  I 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.  It was nice, as I didn’t 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.  Very slowly, I also started to tell my closest friends at work, those whom I could trust, to gauge the reaction I would get.   Some said they’d always known I had a twitch but that was just me, and no I was wrong, I didn’t have TS, it must be a mistake.  Others I could never tell, as the subject would be just too outrageous in the testosterone-fuelled and piss-taking environment the stresses of my job create.  So 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 ‘come out’ to.

More recently, and after talking to many people online with TS, I began to get invitations to meet up with other ticcers, but I always put it off.  I just couldn’t do it.  I was fine to talk about this openly in written form, but to someone else face to face!  What if someone at work found out, or a member of my family?  Part of me still had this underground ashamedness of it all that I felt as a child.

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.  Wow, they were real life ticcers, just like Pete Bennett, not an e-mailed conversation from halfway around the world or a newbie like me.  They were in my own city and living with it and telling me I could also, and to get myself out and meet with people.  But I didn’t.  I still put it off and off and off again, until November 2009 when I jumped on the train and went to Victoria Station in London to meet my online TS mentor and very first other person I’d ever meet with Tourette’s Syndrome.

We met in a pub and then went across the street to meet up with several other people and to spend the afternoon and evening all together.  It was crazy, I just wanted to take notes and ask a hundred questions.  These guys had all known each other from before, some for years even.  My initial reaction was that I felt like a fraud; it was obvious that TS affected people in many different ways as far as tics were displayed and some were much more advanced than me in this field.  I was suppressing my tics still for some reason, probably as they were still strangers to me really and new people.  I was scared and felt like I wasn’t part of this group really as my tics were not as bad as some and, like most of the medical information I had read stated, TS can ease over time and obviously had for me.  I felt really guilty because of that.

After sitting and talking to people I realised that I was the same, I was very much part of this thing and began to really enjoy myself.  What was the worry, why had I been so scared to talk about Tourette’s in the first place, then scared to meet up with people who were basically more of an expert about it than any Doctor, or book I had read?  These were real life people now sitting and having a beer with me, who had experienced exactly the same as me throughout their lives.  The connection was unbelievable and also very emotional for me, so much that after a few hours I made my excuses and left.

I cried on the way home, like men do in Hollywood films, just wet eyes and a solitary tear on one cheek.

I had been accepted and I was now out of the TS closet.  Over the next week I told several people that I had Tourette’s.  I even found myself bragging about it in some circles.

Since then, I have told more and more people and met up with my friends even more, some individually and some as a group.  To me they are not just friends, though; they are family I never knew I had.  Just like if I was adopted as a child and then met up with my real family years and years later  – “This is your sister, this is your uncle, this is your older brother.”  We have so much of the obvious in common, it’s remarkable.  So thank you, ladies and gents, for kicking me up the backside and dragging me out of my shell.

Today, I am the guy who is still apprehensive about telling people I have TS straight away, but I like to tease them.  I wear a Tourette’s badge on my tie at work that is large enough for people to need to ask what the hell it is, and even when in conversation and I suddenly interrupt someone I will apologise and blame it on my ADHD, or if I am being told a story like I was today and got bored after ten seconds, I will tell them to hurry up as I’ll be walking away in two seconds.  Then they come back and ask what I meant and I tell them the whole story, and of course they say, “But you don’t swear and shout….”

So this is my story and this is me now today.  A tall good-looking guy who likes a drink and a wink, with a major neurological comorbid disorder called Tourette’s Syndrome.

I finally made friends with it : )

I was diagnosed when I was around 6 years old…and I didn’t talk properly until I was only 3 years old. I am now doing pretty well in school except for the fact that I don’t like my school much as it gives me a hard time, but I have a really nice boyfriend too and he is like me, so that makes it easier. I hope you all like my story.

Knowing what growing up with Tourette Syndrome was like, and remembering the difficulties with understanding the problems experienced as a child and what caused them, led me to finding ways I could help children with TS and other ‘special’ needs caused by neuro-developmental disorders. There was almost no useful advice or support available and I don’t believe things have moved on much now that I am an adult.

I wanted to find a way I could make a difference and be able to improve awareness, influence professional attitudes, improve diagnosis and subsequent provision and treatment. I determined that the best way to do this was to become a doctor myself and specialise in developmental paediatrics or neurology. I could not only become directly involved in the diagnosis and treatment of TS but also become involved in clinical research. Having TS myself would, I hoped, give me a unique insight and ensure I had some idea of the issues that children with TS and their parents face. I hoped my own ‘disability’ would allow me to connect better with and relate to others who are similarly affected.

After gaining my first degree in biological sciences, I taught for several years in a ‘special school’ as a teaching assistant but eventually found this frustrating, as, although I was helping with educational aspects, I became very aware of the profound lack of understanding about Tourette Syndrome among both health and educational professionals. The misconceptions of the medical profession and very poor advice given to parents and their children was something I found truly astounding and worrying.

I was also aware that I had little opportunity to progress and qualify as a teacher. I had applied for post-graduate teacher training during my time as a special-needs teaching assistant but, as I expected, I was not even given an interview.

I did eventually get a place at medical school, but encountered much unexpected discrimination, most of which took place at the very end of four years of extremely hard work, including facing the challenges that studying medicine with a disorder like Tourette Syndrome presented. The manner in which I was treated by staff of the medical school came as a big shock and I was ill-equipped to deal with it. I was subjected to what seemed like a concerted effort by my medical school to deter me from completing my training, using every means possible to question my abilities, undermine my self-belief and even suggest I would pose a risk to my patients should I practice.

My experiences with medical training and the prejudice I encountered make up a complex story that I hope to tell fully one day, and it will help explain how, despite all signs being to the contrary throughout my training, I ultimately had to resign myself to hanging up my stethoscope for the last time and abandon a large collection of costly medical textbooks over which I had pored for unimaginable hours, along with the hopes that had driven me forward. I at least have the satisfaction that I was able complete all my clinical training rotations successfully and received good commendations, assessments and much encouragement from the consultants under whom I trained in several hospitals. I had put in long hours on the wards, in theatre and clinics. I found clinical practice immensely rewarding, and I was actually good at it. I knew I had to work a lot harder than most students to get through all the reading and written assessments. Giving presentations was my biggest fear, as I would have to be the focus of attention in a room full of smart and critical students and doctors, but I managed to overcome this and achieved a passable performance, although the stress was often overwhelming. For a while I really thought I would achieve my goal and be able to transcend the difficulties of my condition.

I often feel very disappointed and immeasurably sad that I could not graduate alongside my other classmates and share in the mutual sense of achievement. This is often the true reality of Tourette Syndrome: you know you can do something, but always have to struggle with others not taking you seriously. Sometimes you just resign yourself to believing that however hard you try to prove yourself, it will never be enough. You get used to seeing your friends and classmates progressing through life and effortlessly overcoming obstacles that may stop you in your tracks. However, despite this, I still try to keep some belief in myself and never feel willing to give up. A problem with this disorder is that individuals are often painfully aware of how others see them, but feel they can do little to change those perceptions.

I had spent four years with my fellow medical students going from our first clinical experiences to greater challenges, with excitement and hope for the future. We went through incredible experiences together and gradually developed confidence in ourselves, our clinical abilities and the potential value of our skills to others. I do, however, feel a great sense of satisfaction in that my clinical partner, throughout my years of hospital training, managed to graduate successfully despite having many setbacks and struggling on many occasions. In the end, she finally made it and I’m sure she will be a competent and dedicated doctor.

Acting and theatre specifically have meaning for me. Initially, theatre for me was an escape from TS that held me captive. When I act it leaves me inexplicably, it just goes away, and yet I can use the knowledge and experience of it to convey meaning and that allows acting complete freedom to take off inside me. The disorder switches off when I act or even when I visit a theatre! My ‘disorder’ is defied and replaced by theatre and acting.

Similarly, I believe our modern society is in disorder and everyone seeks meaning and to be set free in some way. We tend to ‘see’ our modern world through and because of television. That so-called real-world is a world that left me behind, or possibly I just attempted to ignore it because of my TS. A greater thing was brought home to bear on my life and this thing ‘theatre’ has been my greatest release.

Theatre also provides me with a real kinship with those involved, including audiences, which is made more real the more ‘modern life’ imposes itself on us all and breaks us apart from one another. For me, giving something back might sound trite, but it is imperative because theatre released me and cures me and I feel the need to convey this healing to stimulate the ‘cures’ in others. Through theatre we can replace what is missing in our modern world. Through theatre we can find our ‘self’ and ‘selves’ together.

]]> https://conditionalpublications.com/2011/07/24/i-have-tourettes-im-an-actor-because-of-it-a-personal-testimonial/feed/ 1 https://conditionalpublications.com/2010/01/02/an-inspiring-interview-with-basshunter/ https://conditionalpublications.com/2010/01/02/an-inspiring-interview-with-basshunter/#respond Sat, 02 Jan 2010 19:46:26 +0000 http://conditionalpublications.com/?p=79 Jonas Altberg – a.k.a. Swedish dance act Basshunter and also a ‘tourettic’.  Listen to his inspirational BBC interview about life with the condition – and for the record, he happens to take the same view to Tourette’s as we do.

http://www.bbc.co.uk/blogs/chartblog/2008/07/basshunter_tourettes.shtml]