The singer who finds freedom from Tourette's
- 13 December 2011
- From the section Magazine
At the age of 20, Ruth Ojadi had a powerful singing voice and a place to study music at university. She should have been on her way to the top, but within two years was diagnosed with Tourette's Syndrome and her world fell apart. Three years on, Ruth has decided to take her life back and step up to the mic once more.
"I am and will always be a tic-er. I've finally come to terms with it," says 25-year-old Ruth Ojadi.
In 2008 Ruth was diagnosed with Tourette's Syndrome - a neurological disorder characterised by tics or sudden, involuntary movements and sounds that occur repeatedly. She was two years into her music degree course at Middlesex University in London at the time.
"It was weird because my tics were starting to surface. I was suppressing them, but it wasn't as obvious and I remember sometimes running out of lectures and having panic attacks because I felt like I didn't know what was going on with me," she says.
"My sister had mentioned a couple of times maybe I had Tourette's, because she'd seen Pete [Bennett] from Big Brother, but I just didn't equate that to myself."
Although Ruth had not realised what they were, her tics started with rapid blinking and twitching at the age of 16. Her GP had put this down to nerves, but her condition became debilitating. Before long she started swearing and blurting out inappropriate comments, eventually dropping out of university and locking herself away from the outside world.
Tourette's Syndrome affects about 300,000 people in the UK, but only 10% of those are like Ruth, where their Tourette's compels them to swear and act inappropriately (known as coprolalia). This makes everyday tasks like commuting and shopping extremely difficult.
"I noticed a few months ago as soon as I walked into a shop the first thing I shouted out was, 'I'm stealing' and it's just stuck. So it goes everywhere else with me, but in particularly it always just seems to refer back to whenever I enter a shop," she says.
Ruth also shouts out personal details that she does not want other people to hear, such as her bank card pin number. Or makes rude hand gestures to motorists when trying to thank them for stopping to let her cross the road. Some motorists even speed up towards her when they think they have been insulted.
Another symptom of the condition is that Ruth repeats phrases or noises that she hears around her (called echolalia). It took a while for Ruth's older sister, Joy Ojadi, to get used to her sister's condition.
"I didn't know how to cope with [her] Tourette's," she says. "I think Tourette's affects people around you, because when we used to talk before, I didn't know how to carry on having a conversation with [her]... I'd carry on stopping constantly."
The only time Ruth's tics subside is when she sings and for the first time since she was diagnosed, she has decided to perform in public to a group of strangers at an open mic night.
"I realised that actually making music was almost like a therapy. I get release from this and I'm able to just do something and know full well that I'm going to be in control of it at all points," she says.
When Ruth sings she does not show any signs of the condition, but is still worried the audience will be distracted by her comments or expressions before and after the performance.
"I don't think everyone as they get ready for a gig is prepared to see someone with Tourette's, but I want to make them feel like that. Not that everything is a possibility, but that we exist," she says.
Ruth also makes sure she always dresses the part and would not walk around in jogging bottoms, because her condition has the tendency, she says, to make her look a little like a "madwoman" and she is determined to make even more of an effort with her physical appearance.
'Taking its toll'
Most cases of Tourette's Syndrome appear in childhood, but Ruth's first facial tics emerged at secondary school where her motor tics - rapid eye blinks, then nose twitches, were all on the right hand side of her face. Her former teacher, Lynne Franklin, recalls Ruth's "quiet determination" as a student, a time before her Tourette's took hold.
Ruth now teaches at a centre for autistic adults, where she works hard at suppressing her tics in front of the students.
"She may have the occasional hand twitch but in terms of the vocal tics, there are none," says work colleague Panos Bouras.
"Maybe towards the end of the day there is a bit of breathing like 'huh', but not once has she swore, not once has she said anything offensive whilst working with the clients, and I just think that's absolutely incredible, but you can see it takes its toll."
To suppress her behaviour Ruth tenses her body and mind which leaves her exhausted at the end of the day.
The pressure leading up to the open mic night is also physically and mentally stressful for Ruth, and just ahead of her first live performance, her nerves send her tics into overdrive. However the gig is a personal triumph and vocal success and Ruth is planning to do more live performances.
"If I'd have tried to do this two years ago, I wouldn't have given it as much performance, effort, energy as I do now. I wouldn't have seen it through," she says.
"It would have been a wasted opportunity. I wouldn't have appreciated my voice or thought that my voice could do the things that it does."
"It's the only respite I get, and I'm truly grateful for that, because not many people with Tourette's can have that."