This story contains explicit language – you have been warned.
This story may be a tic trigger for people with Tourettes.
Have you ever tried to stifle a sneeze? It’s not easy, but it’s doable.
Now think about suppressing 50 sneezes a day or 50 sneezes an hour.
How do you think you’d go stifling 50 sneezes a minute? For an hour? You’d be approaching the tip of the iceberg of what many people with Tourette Syndrome (TS) live with every day.
If you are a conservative person you may find Sophie’s behaviour shocking, uncouth or vulgar. If you can be very rude and uncouth yourself (like me) and have a potty mouth, you might find it endearing, or even funny, but Tourette Syndrome is no laughing matter.
*whistle-shrug-tongue click*
The difference is, rude people can contain their language, but Sophie, who doesn’t want to be rude and obscene, can’t. She doesn’t want to have to avoid going to the shops because of the overt stares, comments and finger pointing that come with buying the essentials.
Sophie doesn’t want you to hear her calling her own mother a ‘fucking whore with viagra in her cunt’ *whistle-shrug-tongue click*.
Sophie’s condition has isolated her to the point that at 18 she pretty much has no social life apart from the contacts she has made amongst the Tourettes community and her mum.
A straight A student and a bright future
Sophie was a fairly usual 16-year-old living near Lismore when she experienced the onset of TS. She was a straight A student who excelled in math and science and was thinking a career in aeronautical engineering might be an option in her future.
After a traumatic incident put her in an ambulance and a hospital bed at Lismore Base, her life changed irreversibly. She went in as Sophie, she came out as Sophie and her tics – they just appeared.
Sophie said that the ‘opinions’ of her tics are vastly different from her own personal opinions. ‘I saw an Asian man and I [my tics] were wanting to pull my eyes sideways and start screaming at him how I hope he eats dogs and stuff.
‘I redirected it but started screaming. “I’ve got rice in my ears”. I was like, “I’m so sorry”.’
Redirection is possible some of the time and takes a visible amount of energy – Sophie redirected to ‘coconut’ (play with the letters – you’ll work it out) several times during our conversation, but redirecting requires a lot of concentration and at the end of the day can make her exhausted. It’s better if she doesn’t have to.
Tourette Syndrome awareness week
This week is Tourette Syndrome awareness week and the Tourette Syndrome Association of Australia (TSAA) are hoping the wider community can take some time to see how the condition impacts the lives of those living with it.
The theme this year is Tourette Syndrome: What’s your first response?
The hope is that first responders, ambulance, police, firefighters and workers in emergency situations will become more aware of TS and ask themselves if it may be the cause of the person they are trying to help being abusive and ‘violent’.
The association is also looking at the first response from the community when someone with Tourettes, particularly those who have coprophenomena (coprolalia – involuntary tics in the form of socially unacceptable words, and copropraxia, gestures) often of the type of behaviour Hollywood like to make jokes about. This is no joke.
TSAA say they would love to help first responders become aware of how they can make some little changes to the way they approach someone with TS. These small changes will make a massive impact particularly for those in our community that have been negatively impacted by preconceived ideas of what TS is and isn’t.
TSAA would also like the community in general to have a better ‘first response’ to people with TS who may be ‘ticcing’.
An assumption of drugs or alcohol
Sophie’s mum Katrina says what often happens with first responders is that when they come across someone who is swearing and violent, it’s usually in a stressful situation, something that can make ticcing behaviour escalate, they assume the person is on drugs or drunk, someone to be managed a certain way.
Katrina says that if emergency services and hospital staff were more aware of TS they could respond in a more appropriate manner, one better suited to the health and wellbeing of the person with TS.
The cost to a family
The physical cost to Sophie and her mother is heavy. Sophie is covered in scratches, bruises and scrapes from her tics throwing her on the ground and self harm tics. A trip to the bathroom to wash her hair can end up in a mouth full of shampoo. Her house has holes in the walls and remnants of food particles in places you wouldn’t expect to see them. Katrina also wears the marks of the parent of someone with TS.
Unfortunately, as Katrina explains, the NDIS sees TS as a childhood condition that goes away, so people like Sophie who are now adults have little or no support from the system designed to support people with disability. ‘When you turn 18 apparently you just don’t have tics anymore.’
One of the biggest problems is a society, and even a medical community sometimes, who think they are putting it on.
Sophie has some non-Tourette-related conditions and her file has even drawn the response from a doctor that she has too many rare things wrong with her and is it possible she is faking it?
Sophie is amazing. She stands at the bottom of the mountain with no way clear way up and with little supporting help, yet she and Katrina still forge onwards and upwards every day in any way they can.
There is a lot of love and tonnes of humour in their home and a belief that ‘FUCKING DILDOS IN YOUR MOUTH !!!’ *whistle-click*
Please be compassionate – there are people who live with unimaginable things. Your judgement is one more thing they don’t need.
The Tourette Syndrome Association of Australia have an abundance of good information.
There is a great program on SBS called Me and My Tourettes.
Just for the hell of it – go and buy yourself a big jam doughnut covered with sugar. Take a bite – and make yourself not lick your lips, no matter what. See how that feels.
For four decades The Echo has printed the stories some people loved, some people hated, and some pretended not to read. If you want us to keep telling the truth, the real truth, not the sugar-coated version. We’ll need your support to keep the presses rolling. 
