Love in the face of Tourette's

Love in the face of Tourette's

Faced with bullying and discrimination because of his uncontrollable tics, Jeremy Goh still found a way to embrace life and love - with the help of his family and 6-year-old daughter.

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In school they mocked him, "uh, uh Jeremy". His uncontrollable jerks and outbursts lost him 2 jobs. And still, this young man with Tourette Syndrome found - and gave - unconditional love and acceptance. READ more, and WATCH the On The Red Dot episode.

SINGAPORE: The kids at school used to make fun of him his uncontrollable movements and outbursts, imitating the noises that Jeremy Goh made or the way his head and arms jerked about.

“The sounds I used to make was ‘uh uh’ so they would call me ‘uh uh Jeremy’,” he recalled.

His younger sister Melissa remembers how he was teased and taunted, shunned and excluded by his peers. “It hurt to see,” she said.

But even worse, his teachers too added to the discrimination. He’d be asked to sit outside the classroom during school hours and examinations.

He never understood why.

“The message that’s sent across is that you’re being punished, although it wasn’t a punishment. With Tourette’s, I already knew I was different - but by separating me from everyone else, it made me question whether or not I would be able to lead my life normally,” he said.

Now 38, Mr Goh has had a lifetime of dealing with being treated as a pariah by some because of Tourette Syndrome. It is a neurological disorder that causes sudden, involuntary vocal and physical tics.

Watch: What it's like to have Tourette's (4:41)

Thankfully, he has not had to deal with it alone – given the love and support of those closest to him, as featured on the programme On the Red Dot (watch the full episode here.)

DAD THOUGHT HE WAS BEING NAUGHTY

It wasn’t like that at the start. As a young child he had started to develop the tics that are symptomatic of Tourette’s.  But nobody was aware that this was the cause of them at first.

His father, William, simply thought that his son was being mischievous, and was upset by what he took to be deliberate blinking and repeating of words to annoy others.

“He got punished for those so-called bad habits,” said the elder Mr Goh. “When those habits became more intense and frequent, he got us more and more worried. Was there anything wrong with him?”

Jeremy's father, William Goh, insisted on giving him as normal a life as possible.

At the age of 10, Jeremy was diagnosed with Tourette Syndrome.

“That was the first time we’d heard the term,” said the father.

“But what hit us about this condition was that there isn’t any cure for it. You can’t just say, take medication or some treatment and it goes away.”

While medication can help control the tics, there are side effects like drowsiness and fatigue.  

Explaining what having Tourette’s feels like, Mr Jeremy Goh said: “It’s something that I can’t control, and which I’m also not supposed to control.

If I were to control it, it works like a pressure cooker - it would actually build up until eventually, it comes out in one big bang.

For all this, though, his family never treated him differently nor kept him isolated at home. He took the school bus and went out to eat with family.

At home, Mr Goh had to pull his weight like his siblings with the household chores - clean the house, wash the clothes, cook.

Said his father: “By treating him as normally as we could, and with no special treatment, I think this has helped him to grow up and make a life for himself, just like any other child growing to adulthood.”

As a child, Jeremy was expected to pull his own weight at home like any of the others.

With the support at home, Mr Goh was able to attend Saint Stephen’s Primary and Saint Patrick’s Secondary.

After finishing school, he worked part-time at a call centre before completing National Service, during which he underwent modified Basic Military Training.

LOST JOBS BECAUSE OF TOURETTE’S

Between 2001 and 2004, he worked in various publishing firms, earning S$1,500 to S$1,900 a month.

But by the time he was 25, he’d been let go from two jobs because of his condition.

“That was probably two of the most depressing moments of my life. I knew for a fact that it (Tourette Syndrome) didn’t affect my performance,” said Mr Goh.

While I was working, it gave me a sense of achievement, it made me feel good about myself. And then all of a sudden it was taken away.

Jeremy says Tourette's did not affect his work performance, yet he was let go from two publishing jobs because of his symptoms.

He realised that he needed to find a place where he would be accepted. And in 2004, Genesis School for Special Education proved to be just that.

The school for children with special needs offered Mr Goh a full-time teaching position. He currently earns about S$3,000 a month, training his charges in vocational work with the goal of helping them be employable.

"I have always been advised to look at myself beyond the tics, beyond Tourette’s. In that sense, it helps me at work where I look beyond the children’s conditions. I look at their strengths and tap on that,” he said.

Genesis School’s vice-principal Benjamin Kwek said that staff, students and their parents have been supportive. “The parents are very understanding when we tell them that one of our staff members has Tourette Syndrome.

“The most important thing is to know what he’s capable of, what he does best, and then we modify the work routines and duties. For instance, we will avoid things that are breakable,” said Mr Kwek.

SOMEBODY TO LOVE

Even with a meaningful job, though, Mr Goh felt that something was still eluding his grasp – love.

“There was always a part of me that was lacking,” he said. “One of my biggest dreams in life was to start my own family, get married and have a child of my own. I wasn’t sure whether I would be able to accomplish that.”

Jeremy met Jolie on a night out with friends in 2009. It was the first time she'd met anyone with Tourette's, but she wasn't scared.

In 2009, while on a night out with his friends, Mr Goh met Jolie Tan. The two started talking, hit it off, and went on their first date a few days later.

“It was her first time encountering someone with Tourette’s,” he recalled.

She wasn’t scared or shocked, but rather, she was concerned because the first thing she asked me when she encountered my tics was, ‘Are you ok? Is there anything that you need?’

After just a year of courtship, the two got married. And while they wanted to start a family, becoming a father posed another worry for Mr Goh.

The causes of Tourette’s are unknown, but it is hereditary and genetics play a role in many, if not most or all, occurrences of the conditions, according to the Tourette Association of America’s website.

“Obviously I have my concerns about my daughter having Tourette’s,” said Mr Goh. “But the consolation I have is that the sufferers of the condition are usually males and females are usually the carriers.”

Allymae when she was born in 2011.

Today, their daughter Allymae is six and shows no sign of the disorder, which affects about 1 in 10,000 people.

It is also three to four times more common in boys than in girls. Some notable people with this disorder include English writer Samuel Johnson, US national goalkeeper Tim Howard and Singapore mixed martial arts sensation Amir Khan.

Mr Goh said: “I remember that the day I carried Allymae in my arms, I realised that this is what life is all about.

“Everything that I went through - the challenges in school, everything else - didn’t matter, because what matters is what’s in my arms right now and my wife who was just beside me.”

All the challenges he went through "didn’t matter", he said - because what did matter was his daughter in his arms "and my wife just beside me”.

DADDY’S LITTLE HELPER

The thoughtful little Allymae helps daddy deal with his condition.

Whenever he travels by Uber, Mr Goh said, he’ll inform the driver that he has a nerve condition and they need not worry about the noises he makes. But when some still seem a bit reserved, he’ll call up his 6-year-old and put her on the speakerphone.

Said Allymae:

I will tell the driver that my father just has Tourette’s… I will tell them not to be scared of it.

Like many others with the syndrome, Mr Goh also has Obsessive Compulsive Disorder (OCD) which causes routine tasks to take much longer.

He uses a metronome’s regular beat to guide him with tasks such as putting on his clothes and getting ready for work.

But there was once when the device stopped working, and Mr Goh said: “I was standing there for quite a while, not being able to get dressed, and Allymae actually noticed it.”

She started clicking her tongue like the metronome - tok, tok, tok. “I made that sound for my father so he could concentrate,” she said. And indeed, that helped him finish dressing for work.

“This is one of the amazing moments that I’ve had with Allymae,” said Mr Goh.

Allymae helps daddy deal with some difficult situations, such as reassuring concerned Uber and taxi drivers about her father's condition.

IT'S HIS CHOICE, HIS BATTLE

He has never let his disability stop him from trying to lead a normal life, and constantly reminds himself that it is up to him to make the best of things. “I could choose to let it affect me and let my whole world come crumbling down. Or, I could choose to look at myself beyond Tourette’s,” he said.

He added: “Would I still get to where I am today if I had lived a normal life? I don’t know. But at the end of the day, my life took a different approach. I had to walk a different beat, and I accepted it, and that has led me to where I am today.”

His sister, Ms Melissa Goh-Karssen, admires his resilience in the face of the adversities that he has faced, and is still facing.

“I don’t fight his battles. Even now I feel that it’s not our battle, it’s his battle to fight,” she said.

“We all have challenges but when you are faced with something that’s inborn, and seeing how he has used that in his life and not make it define him, makes me very proud.”

Watch the full episode of On The Red Dot here. New episodes every Friday, 9.30pm on Mediacorp Channel 5.


Source: CNA/yv

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