Tourette Syndrome and how much I suffered from it

Earlier this week I was taping an interview for one of the most popular talkshows on Indonesian TV, "Tea Time with Desi Anwar". Desi is one of the top reporters in this country, and meeting her in that session convinced me that she deserves her reputation. During the breaks I quickly decided that I will talk about a subject which I never talked publicly before (although everyone who looks at me knows that I suffer from it) which is the Tourette Syndrome (TS), and how I suffered from it. In all the hundreds of interviews with reporters I've done throughout my life, I haven't opened up this matter to any one of them, and they were all nice enough not to touch this matter. At Desi's program, it was me who decided to talk, not her. .............................................................................................................................................. I had TS since as early as I could remember. My mom took me to some psychologists on this matter, but they proved useless, which only much later in life I realized that this is a syndrome that still has no cure for. Needless to say, I got bullied a lot at school with this thing with me, and even now some people look at me in a strange way. TS is a "cluster" disorder: because it is made up of separate symptoms, no two Touretters are the same. It consists of physical twitches, vocal twitches, obsessive-compulsive disorder and attention deficit hyperactive disorder. You can control the obsessions and compulsions for a time, but eventually they have to find an outlet, like an itch that has to be scratched. .......................................................................................................................................... TS automatically brings different side effects in each person. The most common are depression, anxiety (nervousness), seclusion (anti-social) and hyperactivity. In my case, I remember that my mother thought that I had abnormality in my talking or hearing, because until the age of almost 3 years I still wasn't able to speak. Apparently this is quite common, because people with TS tend to be introverted character even from a very early age, so we are not interested in getting in touch with the outside world. This character is also a cause of depression, because often we think about things too deeply, often repetitive due to the muscles and nerves in the brain that works without control. .......................................................................................................................................... Learning deeper about TS, I realized that it not only give disadvantages, but also advantages. Since TS not only affects outer body movements but also inner, it affects how our brain work. Most TS sufferers are hyperactive at some times which then are compensated by strange obsessions. In my case, when music sounds in my brain, it just cannot stop. I just gotta write it down, and sometimes I became so tired (or I had been so tired from working something else) but I couldn't stop myself from writing. And I am obsessed with each and every note; those notes may not be the BEST notes, but those ARE the notes which HAVE TO be in my piece. After writing, obviously I became dead tired, exhausted beyond belief, and I need hours of rest. During that rest I still need to do things extramusical, like reading, blogging or for the last 3 years tweeting (which I admit, am quite addicted to it). Months later I could just forget totally how the piece sounds, but at the time of its writing I couldn't take my focus and attention off it. It was simply Goodbye, world. .......................................................................................................................................... Another obsession of mine is being alone and lonely. I do need so much time to be both. It is ok if I am lonely by being alone, but if I am in a crowd (and mostly when I am performing) this loneliness become unbearable. It is a strange thing that I suffer from being lonely, but I enjoy it on the other hand. It's a kind of mental sadomasochistic attitude. This is one of the reason that I cut many of my performing activities. While my brain cannot stop being creative (I'd rather to call it as such, than call it being obsessed), mentally I can't stand too much being in, or exposed to a crowd. Being a composer really helps in keeping me mentally sane. ............................................................................................................................................. If you have friends or relatives who have TS, although it still can't be cured, much can be done to help them. The most important is your understanding, that we don't want all the tics and we can't suppress it. The symptoms of TS are unstable; it may be reduced depending on the state of the patient, and therefore a calm situation without the pressure / stress overload is very helpful in this regard. During my life, I have also observed that caffeine and sugar somehow exaggerate those tics, that's why I rarely consume 2 things mentioned above. Due to excessive brain nerves work, the majority of people with TS have higher than normal intelligence and a certain creative potential that can be (far) above the average; this can be developed which can be useful for us and the society around us, but we need participation and understanding from the society too. There are so many (I do not know exactly the data) MENSA member (the club of people with IQs categorized as genius) around the world with TS. The role of teachers at schools are very important to explain to students that this disease is "normal" although it's still often considered mysterious. .......................................................................................................................................... The icon of TS sufferer in the music world is W.A. Mozart. My theory is that his father "abused" him of working the whole day and night not only to get money from his work, but also to cool him down of his numerous uncontrolled (and sometimes aggresive or even self destructive perhaps?) body movements. I might be wrong. Of course during his time the syndrome wasn't named as such, since Gilles de Tourette himself (who first diagnosed this disease) was born in 1857, while Mozart died in 1791. There is a good article on TS and also on Mozart here : http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2117611/ ............................................................................................................................................. If you suffer from TS, or know someone who suffers from it, let's have a chat and share your stories! Tweet me at @anandasukarlan , ok? And why not write your own story in a blog like this?