The good people of IPG Publishing recently sent me two books on Tourette Syndrome to review. One was “Ticked: A Medical Miracle, a Friendship, and the Weird World Of Tourette Syndrome.”
The writer, James A. Fussell, talks in candid first person Technicolor about his experiences growing up with Tourette Syndrome. While this disorder didn’t keep him from becoming an accomplished journalist for the Kansas City Star, it was by no means a walk in the park for him either. His tics were severe, at times completely debilitating.
A lovely summary was written up in Good Reads:
When Jeff Matovic burst into the office of Dr. Robert Maciunas, he had very few options left. Matovic had suffered for years from Tourette Syndrome, his full-body spasms and outbursts getting progressively worse, to the point that he saw suicide as a viable option. Drugs, physical therapy, prayer — nothing was working. But Dr. Maciunas was a pioneer in deep brain stimulation (DBS), a new therapy that had worked to correct other brain disorders. Could it fix Matovic’s Tourette’s? All Matovic had to do was convince Dr. Maciunas that he was a perfect candidate for the procedure. That, and have several electrical leads — a “brain pacemaker” — implanted into his skull.
Author Jim Fussell is uniquely qualified to tell Matovic’s story—he suffers from Tourette Syndrome as well. Fussell’s job as a feature writer for the Kansas City Star brought him in contact with Oprah Winfrey, who first told him about Jeff Matovic, the “Miracle Man.” As Fussell learned about Matovic’s remarkable journey, he vowed to seek him out. This is their story.
As the mother of a child with mild Tourette, where it borders on “medium” when he is stressed or just dealing with the normal ups and downs of this nutty disorder, I have very strong opinions about this fascinating memoir:
- If you are new to the world of Tourette Syndrome, this is not the book for you. Talk about “deep brain stimulation” and tics so strong that the author spent thousands of dollars on pillows, mattresses and deep massage tissue machines to curb the excruciating pain of his tics will FREAK YOU OUT. Fussell’s story was nothing but real, and I by no means am trying to take away from his journey. But I also know that not every child with this disorder fares so poorly. More do just fine flying under the radar. And even if they don’t fly under the radar (like my son — sometimes his tics are obvious) they don’t necessarily suffer, either. I’m concerned for some new moms and dads that this book would take you to the place of “big scary diagnosis my life is over” and I wouldn’t recommend it.
- If you are a writer, or you’re an avid reader of real-life stories that hold back nothing, you will not be disappointed. For me, having been on this TS journey for several years now, I was able to read his book from an objective place of “Hmmm, wow, he writes so vividly. I really felt he was a friend by the end. He is brave and open and fearless with his words. ” I really enjoyed the alternating chapters between his viewpoint and Matovic’s. It was written with style and eloquence. I left the book grateful for the time I spent reading it.
In closing, while it isn’t easy to read about someone’s struggles, I was left with inspiration. God forbid my baby should ever require deep brain stimulation, but thank God also that there is an alternative to help his suffering should he require it. Fussell waves a shining lantern of light on courage vs. fear. His illumination was not unappreciated in an often dark and scary hike down Non-Neurotypical Highway.
As I always say in this blog, all is not lost with a scary diagnosis. Do not live in panic or “What If” mode. Pick and choose your support systems, what you will read and not read based on your emotional state, and know that there is always a second chance.
Most importantly, hold onto hope. Fussell’s book is a strong example of just that.