Soundtrack to a new life
Renee Harvey stands still, eyes closed, hands resting on headphones as she sings.
She is rehearsing her first song, This is Me, with a chorus that says: ‘‘This is me, this is me, what you see is what you get, speak your mind with no regrets.’’
It’s a soundtrack to her new life; one where she can hold a conversation without a string of obscenities and where she can look for her first job, something she never thought would be possible.
The 26-year-old Nelson woman has been described as having one of the most severe cases of Tourette Syndrome in New Zealand, having battled relentless physical and verbal tics that interrupted whatever she was doing.
But ground-breaking surgery six months ago has given her a chance to follow her dreams.
‘‘This surgery has changed my life, just enough for me to get out there. I am working for what I want and it is becoming reality, it is so cool. All my dreams are coming true.’’
Two years ago, Harvey struggled to leave the house because her Tourette’s was so severe. Taking her son Neko to school and shopping for groceries were sometimes impossible tasks.
When she was nervous she couldn’t get through a sentence without a string of swear words escaping at the same time. Her muscles would tense uncontrollably, her neck jerking and closed fists hitting her head. She tried prescribed medication including Ritalin and Sativex, but they didn’t work out.
That time of her life, Harvey said, was ‘‘just depressing’’.
‘‘I don’t usually look back, but I’m just really proud of myself, I’ve come a long, long way.
‘‘I just wanted to be someone normal, I didn’t even know what
I just wanted to be someone normal, I didn’t even know what the hell normal was.
Renee Harvey
the hell normal was.’’
Harvey had a surgery known as deep brain stimulation last August. It was her last hope for relief from the relentless tics.
But it was the first time the surgery had been performed in New Zealand and the thought of the operation was terrifying.
‘‘There were two things I was terrified about. Either coming out worse or dying on the bed, having a brain bleed or a stroke.
‘‘I just had to hold onto the little bit of faith I had and go for it. I knew it was my only chance, my last chance and I’m f***ing so happy I took it.’’
Her head was cut from ear to ear and Harvey had two threadlike electrodes inserted in her brain, through which small electrical impulses are sent via a pacemaker in her chest.
‘‘It sends signals to my brain to tell it to not tic sort of thing.’’
Since then, Harvey’s life has changed in ‘‘every shape and form’’.
The tics haven’t been completely eliminated. During the interview she occasionally swears and has uncontrolled spasms. But even at their worst now, they occur less often than they used to.
Harvey said the relief the surgery had brought was a miracle.
Her next goal is gaining employment. She wants to work in a job where she can help people.
‘‘There have been a lot of times when I have been down and desperate for help and a lot of people have helped me.
‘‘I hate to think there are other people out living like I used to, behind closed doors for years on end, depressed and letting their life go to waste.’’
Workbridge case manager Nicola Zielinski said Harvey contacted the employment agency as part of her job search last October.
‘‘We began working together on a bit of a mission, a plan. Renee has never worked before and my aim was that we would try and get her as connected as possible with the community.
Zielinski, who is a singer herself, said when she heard that Harvey liked to sing, she had an ‘‘out of the box idea’’ that they sing together to help boost her confidence.
She collaborated with musician Bryce Wastney to write a song, which was then recorded in his Nelson studio.
‘‘Renee put these beautiful vocals down, I did a little bit of backing, Bryce did all this wonderful music and it created this bit of magic, we watched in front of our eyes this magic happening,’’ Zielinski said.
The song has been released on Spotify and Harvey performed it live for the first time at a sellout gig at The Playhouse last weekend.
Harvey refers to Zielinski, Wastney and herself as ‘‘the A team’’. She was deeply grateful for their support.
‘‘It’s been nice for someone else to give me a massive opportunity like this, it has actually done a hell of a lot for me, it has made me a lot more confident, I feel a lot happier within myself.’’
Harvey features in the documentary Living with Tourette’s: Renee’s Brain which will air on Prime TV later this year.