Painting a perfect picture of what it is like to live with TS

Posted Tue 6th Aug 2024 at 12:04
by Caleb Siwu Ojula

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31 year old Civil Engineer, Caleb, tells us what it was like growing up with TS in Uganda

*Content warning – this post discusses suicidal feelings*

Painting a perfect picture of what it is like to live with TS should be considered a skill in itself. Owing to the fact that it is rarely-occurring, multitudes are challenged with the unfortunate inability to relate. My ordeal was, and still is, no different.

I am Ojula Siwu Caleb, a 31 year old trained Civil engineer from Uganda. As far back as I can recall, my first interface with TS was when I was 6 years old. Throughout my life, memories about the initial manifestations of TS in my life were accompanied by intense discomfort, primarily due to the solid fact that my experience was intensely painful and embarrassing.

One of my tics involved aggressively rubbing my big toes against my second toes, and oh my…...! I did it relentlessly. I kept developing blisters, and at times wounds on my big and second toes, and as if the pain and embarrassment weren’t enough, I had to deal with the torture that came with the bullying from my colleagues both at school and home. I had another tic in which I always felt like there was an itch between my buttocks, requiring continuously having my hand in there scratching, in a futile attempt to quell my discomfort. The vocabulary with which I can describe the humiliation and bullying that came in response to this particular tic is so limited! I would have to invent some terms. I am grateful to the heavens that those tics didn’t last forever due to the “changing-nature” of TS tics. I would later get other sets of tics to carry along with me in my life journey.

Coming from a society that is overwhelmingly superstitious, my condition was often times attributed to witchcraft, and possible family curses.  My parents sought help by consulting with counselors and medical people. To this, they were told it was bad mannerism or bad habits that I had to be encouraged to drop.  I continued to painfully drag myself through life with utmost ignorance of what was making my exodus extremely troubling. Another day I would wake up with a strong determination to stay still and rid myself of my urges, another day it would be to be disappointed. Another week I would wake up with a strong determination to stay still and rid myself of my urges, another week it would be to be disappointed. The weeks would become months, and the months, years. A once bright, confident and charming little boy would turn into a bitter and paranoid young man.

That bitter and paranoid young man would later seek solace in alcohol. The physical and psychological pain of dealing with TS, coupled with the floods from the abuse of alcohol as an antidote for the pain, would throw this man into a river of hopelessness. That river of hopelessness would eventually carry him to the gates of suicide, his turning point.

Surviving a suicide attempt gave me a fresh perspective about life, and I embarked on a personal quest to unearth the identity of this condition that had led me to this unfortunate point in my life.  I thank the heavens for the internet because it is through it that at the age of 30, I discovered the identity of the condition that had kept me chained since the age of 6. This incomparable discovery had me drowning in tears for days as I read and watched testimonies of people who were just like me. I almost chocked on my own breath as I endlessly, one after the other, watched presentations of doctors with TS, and other people living with it, painting perfect pictures of what and how I felt. Finally, I wasn’t cursed! Finally, I wasn’t bewitched! Finally, I wasn’t a weak brat that couldn’t drop a bad habit. I was simply sick! I would get to discover about the co-occurring conditions of living with TS, and appreciate how they were more disastrous than the actual tics.

I would also get to know that almost half of the people with my condition had contemplated suicide. This did not make the fact that I had attempted okay, but it affirmed to me that there were others that felt exactly like me. All these discoveries enabled me to see myself from a perspective that I had never thought of. I got to appreciate the fact that despite my extremely challenging life, I had been able to achieve. I had gone through school with good grades at some of the best schools in my country, with my formal education culminating in the acquisition of an Honors Bachelor’s degree in Civil engineering, a course generally considered to be difficult.

Equipped with knowledge of my condition, I am now experiencing the happiest and most peaceful chapter of my life. My family and friends now get me, plus, I have an extremely beautiful fiancé that supports and loves me unconditionally.

Compelled by the urge to make as much “noise” as possible about TS, I have written a book entitled TOURETTE’S AND ADDICTION; CONFESSIONS OF AN ADDICT, which I intend to distribute for free. It is basically a poetic presentation of my itinerary with TS. One should be able to get a picture of what it feels like to walk in the shoes of a person with TS. It is of utmost importance that; the ignorant victims learn what they are suffering from, their families too because they are the most vital in the support system, and last but not least, the outsiders because they tend to contribute the most to the stigma.

TS shouldn’t define you!

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