Body as a Prison : Living With Tourettes Syndrome by Adam Eschbach
It feels like a pressure cooker, like steam, pressure building up to a point of release causing violent tics.
There is no warning and no stopping the continuous self inflicted blows and unrelenting contortions of ones body.
Each bruise, scar, and broken bone has made Tyler Boshae’s body his own prison. This is the pain Boshae has been living with for over 14 years since diagnosed with Tourette’s Syndrome at the age of nine. Every second of every day, without warning his body erupts with violent force. Although unable to control it, Boshae is always hopeful and positive about his condition.
Tyler’s father Steve Boshae recounts the first time he knew there was something wrong with his son. “It was 14 and a half years ago and he was sitting in the back seat of the car,” said Steve, “and Tyler just started saying ‘Ba ba ba.’”
Among all the near death experiences and failing medications, there is hope. Tyler has been approved to undergo a new surgical procedure called Deep Brain Stimulation that can reduce the amount of tics in Tourettes patients.
This risky procedure requires the placement of electrodes on the cells of the brain however; placement is critical in determining the reduction of tics. Then the doctors place batteries into the chest connected by wires, which are hooked up to the electrodes attached to the. Dr. Maciunas of University Hospitals of Cleveland will evaluate Tyler Boshae for the surgery. Dr. Maciunas carried out the first successful surgery to cure Tourettes Syndrome using Deep Brain Stimulation, which reduced the patient’s tics by 100 percent in 2004. That patient was Jeff Matovic who had the same severity of symptoms that Tyler has.
This is great news for the Boshae family. They have been fighting for this new surgery for Tyler since 2004 when it was first introduced under clinical trials. “I’m very excited about the opportunity,” said Tyler. “A ten percent reduction in Tyler’s tics would be a blessing,” said Steve Boshae. Boshae’s hopes for this new procedure aren’t the only change in his recent life.
Tyler Boshae’s life has change dramatically over the past few months. He married Kassie Friesen on September 27th, 2008 after meeting two years earlier at church. “If it wasn’t for her and my faith in god, I probably wouldn’t be here,” said Tyler. Faith has been a very important part of Tyler Boshae’s life and consistently gives him courage and hope.
One thing Tyler wants from people is for them to not feel sorry for him. He doesn’t only see his condition as a burden; it also gives him strength and a will to continue on. Tyler doesn’t blame god for what has been bestowed upon him. He makes the best of what he has.
Boshae’s story is an inspirational one. Everyday, Boshae confronts life with humility and grace. “His attitude was always positive and never let his limitations be an excuse for anything,” said Steve Boshae. “You have to have a sense of humor about it.”
The Boshae’s say that the positives of the surgery far out-weigh any negatives that could develop over the course of recovery. “With brain surgery comes great risks and there is always the possibility of death,” said Jonni Boshae, Tylers mother.
In the coming months before the procedure, the Boshae’s have encountered unwavering support from all over the country. People, touched by Tyler’s story have donated money towards the surgery and every day, Tyler is closer to the $200,000 necessary to cover the surgery.
“I feel blessed with the support I have received,” said Boshae. “I’ve always believed there is a purpose for everything. What plans god has for me.”