‘Holding On’ Jamie Grace’s Battle With Tourette’s Syndrome
By Dan Wooding Founder of ASSIST Ministries, Crossmap On September 18, 2013
ANAHEIM, CA (ANS) -- There was hardly a dry eye in the Honda Center, Anaheim, on Friday night (September 13, 2013) when Jamie Grace, a contemporary Christian musician, singer, rapper, songwriter, and actress from Atlanta, Georgia, sang and also courageously shared on the first night of the Women of Faith Conference with an audience of around 15,000, about her battle with Tourette's syndrome.
Tourette's syndrome, is an inherited neuropsychiatric disorder with onset in childhood, characterized by multiple physical (motor) tics and at least one vocal (phonic) tic. These tics characteristically wax and wane, can be suppressed temporarily, and are preceded by a premonitory urge. Tourette's is defined as part of a spectrum of tic disorders, which includes provisional, transient and persistent (chronic) tics.
Yet despite this difficulty, which was first diagnosed in 2003 when she was 11, Jamie has gone on to find great success after being discovered (via her YouTube channel) by TobyMac and signed to his label Gotee Records. She released the song "Hold Me" in 2011 (landing her a nomination at the 2012 Grammys) and won the 2012 Dove Award for New Artist of the Year.
So, after appearing at the conference, I was able to sit down with Jamie, for a chat, and I began by asking her why she was so open in talking about her affliction, instead of hiding it away, and if there problems to start with.
"When I was first diagnosed, and although I was really insecure about it, I thought that people would be really understanding if I told them," she began. "So, at an early age, I told 'friends' at sleep overs, or after church, 'Oh, you guys, I just got diagnosed with Tourette's.' I thought that they'd say, 'Oh, that's fine,' but instead they were super weirded out by it, so I immediately shut off and stopped telling people.
"But when I was about fourteen or fifteen years old, and I really became more passionate about the things of the Lord, I realized that I could possibly impact at least one person's life or at least inspire one person by sharing about it.
"I remember hearing stories of Tim Howard (an American-born soccer goalkeeper with Everton FC in England) and others who also had Tourette's syndrome, and even more recently of Robin Roberts of Good Morning America and her struggle with cancer and so on hearing how they inspired others, I knew that my story could encourage at least one person so I owed it to others to do just that."
So when did she first realize that something was wrong?
"I was nine when the symptoms started and that was after a lot of traumatic things had been happening in my life," she said. "It started with just movements and twitches and things like that. I don't really remember much before then. My earliest memories are that it just started with my arms my legs my eyes and eventually it progressed into more often and that kind of thing so we kind of had to make a move."
"My mom was the one to take the diagnosis to my doctor and he didn't know what it was. I know that I'm young, but back in that time, it really wasn't as common as it is today. For two years the doctors and my mom went on Google trying to figure out what I had, and what was wrong, and when I was eleven years old, my mom walked into the doctor's office with a packet for the doctor and said, 'My daughter has Tourette's' and so the doctor came back a week later and said, 'Yeah.'"
Was she ever angry at God for having this disorder?
"No, not know" Jamie said firmly. "Of course, there are still nights where I can't sleep because my Tourette's is so bad, and I cry and I say things like, 'God, what's up with this?' When I was twelve and thirteen years old, I just remember feeling that all I wanted was for my hair to look like everyone else's, and for my clothes to be as cute as the next girl, or to be able to sit at the lunch table and for everybody to think I was funny and pretty. I just wanted to fit in, and yet, I was the epitome of different.
"So at that time, I was very angry and stressed out, and confused. I cried, yelled and screamed a lot. But I actually think that it helped in a way because I would just often times scream at God and just ask God, 'why?' and I would have this assurance from my parents and from my sister and from my family, as they wrapped their arms around me, and say things like, 'You might feel frustrated, but this is not the end.' It was like they were saying, 'As big as your frustration is, God's love is even bigger.' It's hard to believe, but when I began to grasp that, it all started to change."
Is there any medication you can take to help with the Tourette's?
"Back then, in the late nineties, early two-thousands, there were a lot of experimental medications," she said. "Personally, I don't do any today, but I did for about three years and they did help, but as I got older and went to college, I went more and more the vitamin route, but it also has simmered down to where I don't have to. It's on a very case-by-case basis. The brain can get really complicated and there's so much going on there. But it has gotten to a point where I have been able to manage it now, and all my friends know about it they'll just get over my stutter."
I then asked Jamie to give her definition of Tourette's syndrome, and she replied, "It's basically neurological, neurobiological, meaning it's in the brain, and it causes movements and sounds that you can't control. It doesn't mean that I can't do things that I want to. I can walk and talk and pick up things, however, because of some neurons that are not necessarily connected in my brain and my body, I do additional movements which are called twitches. So basically people have nervous ticks and twitches but Tourette's syndrome is when it's more twitches that can actually interrupt your daily life and they last more than a year."
As Jamie spoke, I could see that she was struggling to control her twitches, but her huge smile never once left her face, so then I asked her about her earlier life and she revealed that she was raised as a pastor's daughter.
"We grew up in the Southern Baptist Association at an incredible church," she said. "We were definitely southern Baptists, but if you gave us some pumping music, we will start to dance."
When I pointed out that seemed to be very un-Southern Baptist to do that, she laughed and said, "We are not ashamed to dance for Jesus."
Now back to Tourette's, I asked her what advice she would give to anyone who has just been diagnosed with it.
Well first of all, I'll say that even though I believe that Tourette's stinks, and even though I don't like it, and I sometimes I just wish it would go away, for the kid out there, or the mom or friend that has Tourette's, I'm not saying that I'm a great person or anything like that, but I can promise that I would not be the kind of compassionate person that I am now if it were not for my Tourette's," Jamie said.
"I have seen kids bullied in high school and college and I've known what that feels like so I know how to walk up to them and talk to them and share with them. And so, because of what I've been through, it has helped me in my walk with Christ, and helped me teach other kids that are different, to tell them that sometimes that's the way we are.
"I do thank God, not specifically for Tourette's, but I know that He has taught me a lot through this illness. So the irony of Tourette's syndrome is that it's based on something that we can't control and everyone in life has something that they can't control. So whether it's Tourette's, or family or school stuff, or something else medical, we're all going to have something big in our lives that that we can't control, but we can control to choose to go to the Father during those times and even though it's hard and difficult, He does love us He does have a plan for us and He will make everything work out for His glory in the end."
I asked Jamie if she ever felt embarrassed in front of huge crowds when she shares her story, and she smiled and said, "I usually feel it's a privilege. I'm a 21-year-old girl, so I can never make up my mind some days. I walk on stage and I say to myself, 'Don't you dare twitch, as this will be so embarrassing,' and then like today, I was twitching like crazy, but I then say, 'Whatever; they'll get over it.' So it just depends on my mood. You can ask me what I want to eat, and I can never make up my mind, so it's all the same way, but like at the end of my talk this evening, some friends were asking me how I felt and all I could say was that, 'Jesus was here and that's all that matters.'"
By the way, you can catch Jamie Grace's song "Holding On" on the soundtrack for the movie (and in the film!) "Grace Unplugged" along with songs by TobyMac, Chris Tomlin, Colton Dixon and more. Jamie Grace plays Rachel, Grace (AJ Michalka)'s best friend. http://graceunplugged.com/resources
And if you like to know about this extraordinary young lady, just go to her website:http://jamiegrace.com/
Note to the media. I have a ten minute broadcast quality MP 3 version of this interview and if you would like to run it, please request it by sending me an e-mail at firstname.lastname@example.org and let me known which station or network you represent.
I would like to thank Robin Frost for transcribing this interview.
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