Rani Mukerjee has made me famous with her film ‘Hichki‘. Indeed at the moment I am so popular, I’m going to capitalise on it.

No, I do not have a bad throat, neither do I have an allergy and no amount of homeopathy or anything else will help. I have Tourette’s Syndrome. So,thanks but no thanks.

My tics started when I was 6 years old and I am still at it. I was an oddity, a medical curiosity. The best doctors, professors had no idea what was wrong with me. It was finally decided when I was a teen, that I was faking it. In as much as a young teen can throw heavy pieces of furniture and shake huge cars with the force of her tics!

There was of course another theory, that I was possessed! Luckily, my father was from a family who’d have none of that. My mother though in her desperation wanted to try anything. I was disruptive and inattentive too and was too much for my mum to really cope with on her own when my father worked across borders to sort my siblings and my education as well as my medical care. Schooling was difficult, for what we now know to be Attention Deficit Disorder (ADD) and Obsessive Compulsive Disorder (OCD). I did manage to get a University Education with huge effort but at cost to many other aspects of my life.

After a rather traumatic adolescence, my tics took a turn for the extreme which made it worse for my plummeting self esteem, I started having vocal tics and saying whatever I wanted without any verbal filters. I was always in trouble and judged harshly. I tried and tried but just could not manage to control myself. This was also the beginning of poor mental health issues that I have to actively manage to date.

Only in my 30s was I diagnosed with Tourette’s Syndrome and had the whole thing fall into place. I slowly started to feel more empowered and worked with my abilities rather than my disabilities. I made the disorder work for me and still do. With my dis-inhibitors in speech, I used it to my advantage. I say what I want and what others are unable to. I am able to champion the cause of others as well as mine, with Tourette’s Syndrome and other issues too. I am able to connect with others, particularly troubled teens and any ‘down and outs’. It’s made me able to tear things down to bare minimums and work with myself and others to empower from the core. In my work, I have poor perception of danger and hence am able to take huge risks which have mostly worked when patriarchy has not tried to pull me down! I no longer do dangerous things and have learnt over the years to be a little more calculated and careful.

Discrimination:

For reasons not clear to me, Europe has become far worse over the last few years. Indian customs officers have kindly asked me to explain my tics and in the cities I get stared at and have children imitate my tics. In African countries it has been the easiest, not sure as to the reasons but really appreciate the concern and compassion shown. All those who help people like me, thank you. Those who would like to know more and be supportive, thank you too. Those who couldn’t care less and get irritated by my tics and oddities, it’s your problem, not mine.

Back to the movie, not seen it yet. I actually met Rani once and I was ticing. She asked and I told. A staring tic made her offer me her idlis. This was about 8 years ago, she was polite and listened but not sure she had a clue. Now she has made a movie. Go Rani and the producers!

Having seen the trailer, the movie does not seemingly portray Tourettes Syndrome in its complexity. One rarely has the same presentation of tics, motor or vocal; in any case for presentation in entertainment and for awareness, I suppose they are permitted artistic license to do so! Tourette’s Syndrome rarely presents in singular symptoms. AD(H)D (Attention Deficit Disorder / Hyperactivity Disorder), mental health issues, incidents with blind rage, Obsessive Compulsive Disorder being amongst them.

To learn more a simple google search with bring up so many videos and pages.

Be kind to anyone with any disability, including Tourette’s Syndrome, and ask us if you like. Most of us will talk away. Parents with children with Tourette’s, you can make or break your child’s future, so get help. Do not do it alone.

I am 49 years old and I would still say it is not easy.

Find out more, it is all over the internet. If you have questions ask away here in the comment section. I’ll answer.