By Joey Wee
“Jolie! How old am I this year?”
Jeremy Goh yells over to his wife, Jolie Tan, during our interview at their five-room flat in Tampines. Over at the side, our videographer was happily chatting with their 12-year-old daughter Allymae.
Jolie, 46, cheerfully tsks at him before telling him “You’re 44 this year lah”
It’s a typical husband-wife interaction but theirs isn’t your typical love story.
You see, Jeremy has Tourette Syndrome (TS).
Involuntary movements, called tics. Uncontrolled grunts or blurted out words: These are some things that Jeremy goes through every day ever since he was a boy.
TS is a neurological brain disorder which presents in uncontrolled movements (motor tics) and sounds (vocal tics). There is no cure for this condition although some tics do lessen as children grow older.
Studies differ on its frequency but there are some estimates say it occurs in six in 1,000 children. TS often presents with other behavioural or developmental disorders and is known for its association with coprolalia, which is the utterance of obscene and socially unacceptable words and phrases. However, unlike what you see in the movies, coprolalia is relatively rare in individuals with TS.
Growing up and adulthood
It all started with minor twitching in his neck which eventually included vocal tics. Jeremy always felt different from his classmates but never understood why.
That was until he was officially diagnosed with TS at nine.
“Due to the lack of awareness on TS in the past, even if I showed my teachers the doctor’s memo that said I have TS, they would still believe that the movements and sounds I made were just my ‘bad habits’,” Jeremy tells The Pride.
Jeremy was often also called names because his peers thought that he was just looking for attention.
Thankfully, he had a supportive family.
“They didn’t treat me differently from my siblings just because of my condition. I had to do my own chores and they didn’t shun away from taking me out to restaurants and cinemas.”
In 2017, after Jeremy was featured on CNA’s On the Red Dot series (which uncovers personal stories of Singaporeans), people from his alma mater reached out to him.
“Many of my ex-schoolmates reached out to me and apologised. We even went out a few times for meals and I think it served as a closure for both sides, which was very important,” says Jeremy.
Entering the working world with TS was also a challenge.
He started working at 22 but by the time he was 25, Jeremy had already been asked to leave from two jobs because of his condition.
“I was told by my bosses that they loved my work ethic, but I was just too disruptive to my co-workers in the office,” Jeremy explains.
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In 2004, he found his place at a special-needs school. He was doing volunteer work for the school and was eventually offered a job. He has been teaching there for the past 18 years.
“They treat me just like any other staff, but I am just not tasked to handle any fragile items,” laughs Jeremy.
Finding love with Tourette Syndrome
“I have always dreamed of having my own family – a wife and a kid, but because of my TS I was always afraid I would never be able to achieve this,” says Jeremy.
Then in 2009, Jeremy and Jolie met on a night out at St James Power Station.
“Yes, we met at a club,” says Jolie with a smile.
They with their own friends. But in a typical movie-esque meet-cute, Jeremy spotted her and plucked up the courage to strike up a conversation.
“I saw her standing across the room and decided to approach her,” says Jeremy.
From there, they started getting closer.
During their first date, Jolie saw Jeremy ticcing for the first time and asked him if he was okay.
Since Jeremy’s TS had affected some of his past relationships, he was a little guarded over his condition.
“When she asked me that question, I immediately responded in a very macho manner! I told gruffly her that I have TS and if she has a problem with it, we can just call it an early night and I’d send her home,” recounts Jeremy.
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To his surprise, Jolie didn’t react to his defensiveness. Instead, she explained that she was asking out of concern for him, and not because she was embarrassed.
That was when Jeremy knew that there was something special about her.
From there, their relationship only grew stronger.
“It was a little troublesome when we went out, of course. People would stare, but we got used to it,” says Jolie, who works as a nurse in the private medical sector.
In 2010, they got married at the Registry of Marriages.
But was she ever bothered by Jeremy’s TS? What about her family?
Laughs Jolie: “My father was more concerned that he was keeping me out late at night!”
Over time, her family started to see what Jolie saw almost immediately.
“He is more than just his condition. He is a patient husband and a loving father.”
Shortly after they got married, little Allymae came along.
Now 12 years old, boisterous and friendly, Allymae immediately pounced on us to show us her collection of dolls. Even while I was interviewing Jeremy, she and our videographer, Zakeerah, were chatting away merrily like old friends.
Despite her bubbly personality, when she sees people making unwelcome comments about Jeremy in public, she is her daddy’s little defender.
Daddy’s bodyguard
“She is just like my personal bodyguard,” Jeremy says with a laugh.
Jeremy shared an incident from when he and Allymae were at a restaurant.
“Two young men saw me ticcing and started imitating and making fun of me,” Jeremy explains.
Never passing up an opportunity to increase public awareness, Jeremy went up to them and explained his condition. However, they didn’t take Jeremy seriously and continued laughing after Jeremy returned to his seat.
Then, Allymae marched up to them and told them off.
Jeremy recounts: “Allymae told them ‘my daddy has a medical condition, and he is not doing this on purpose. What you guys are doing is not nice!’”
“I stood up to them because I couldn’t stand to be a bystander, I didn’t want to just sit there and feel helpless,” says Allymae.
A few minutes later, the pair approached Jeremy and apologised.
“They even bought us a lobster to apologise for earlier,” says Jeremy with a grin.
Like Allymae, Jolie used to chime in to defend Jeremy in the past.
However, over the years she has stopped doing it so frequently.
“Jolie understands why I should be confronting strangers and explaining my condition to them myself because this is how I can help raise awareness about TS,” says Jeremy.
“I think it is important for people with TS to know that it is okay to stand up for yourself, and that we deserve to be where we are. We deserve the same rights as everyone else,” he adds.
Jeremy shares that he used to be part of a support group called Tourette Syndrome Care Group Singapore.
“We would meet up at one another’s houses; it was just great to be around others with the same condition as you feel less alone,” says Jeremy.
However, as the years went by, members of the support group became less active, and the gatherings eventually stopped.
Without a formal support group, and with Jeremy’s appearances on CNA and other media outlets like MSN, he has become a counsellor of sorts for people with TS.
Friends who meet people with TS would link them up with Jeremy.
“I have had two people with TS referred to me. It is not a counselling session, but just to have a conversation, because sometimes all we need is to speak to someone else in the same situation,” Jeremy explains.
Still head over heels
Even though their relationship has grown familiar over the years, the bond between the couple is plain to see.
“I never thought that I would be able to find a woman who would be willing to spend the rest of her life with me,” says Jeremy simply.
Looking back, it was Jolie’s initial reaction to Jeremy’s tics that made the difference.
Perhaps her empathy was due to her training as a nurse, but it was her assurance that touched Jeremy’s heart.
“During my past dates, whenever someone asks ‘are you okay?’, it usually means that the girl is feeling awkward around me and my tics, but Jolie’s response and her reasoning behind it made me realise she is the one I want to spend the rest of my life with,” says Jeremy.
During our video interview, when I asked Jeremy to describe Jolie in one word, he had a hard time finding the perfect answer.
At first, he laughed and asked: “Can I use more than one word?”
Allymae chimed in: “What about ‘amazing’?”
“Yes, mummy is amazing, but she is also much more than that,” Jeremy replied, explaining that like any relationship, they have their own set of challenges too.
“But it really isn’t about finding out what these challenges are. What’s important to me is being able to work out these challenges together.”
“I wouldn’t have it any other way.”
Oh, and his one word for his wife?
Angel.
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