Holding On’ — Jamie Grace’s battle with Tourette syndrome

There was hardly a dry eye in the Honda Center, Anaheim, Calif., when Dove Award-winner Jamie Grace, a contemporary Christian musician, singer, rapper, songwriter and actress took the stage at the Women of Faith conference, courageously singing as she battled twitching associated with her ongoing battle with Tourette syndrome.

Because of the unpredictability of her disorder, Grace is never certain how her body will respond, especially in front of an audience of 15,000.

“I usually feel it’s a privilege,” Grace said. “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.’”

Regardless of how it goes, the young musician said whether it’s song or story, its all part of her testimony.

“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.’”

The Atlanta, Ga. resident said she was first diagnosed with Tourette, an inherited neuropsychiatric disorder with onset in childhood, characterized by multiple physical tics, at age 11.

“I was 9 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.”

Her symptoms stumped the doctors.

“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 11 years old, my mom walked into the doctor’s office with a packet for the doctor and said, ‘My daughter has Tourette and so the doctor came back a week later and said, ‘Yeah.’”

Grace said she was originally open with her disorder, but began holding back after her peers reacted poorly.

“They were super weirded out by it, so I immediately shut off and stopped telling people,” she said. “But when I was about 14 or 15 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.”

She said she was also inspired by fellow patient, Tim Howard, an American-born soccer goalkeeper with Everton FC in England, and Robin Roberts of Good Morning America who has openly shared about her struggle with cancer.

“I knew that my story could encourage at least one person so I owed it to others to do just that,” she said.

“There are still nights where I can’t sleep because my Tourette is so bad, and I cry and I say things like, ‘God, what’s up with this?’” she said. “When I was 12 and 13 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 (said) 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.”

Grace’s platform to share has widened since Toby Mac discovered one of her YouTube videos and signed her to his Gotee Records label. She released the song “Hold Me” in 2011, earning a 2012 Grammy nomination, and coming home with the 2012 Dove Award for New Artist of the Year. The song is also featured in the film “Grace Unplugged.”

“I do thank God, not specifically for Tourette, but I know that He has taught me a lot through this illness,” she said. “So the irony of Tourette 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, 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.”

For more information, visit www.jamiegrace.com.

— by Dan Wooding — ANS