Posting in Cancer
A review of Ticked: A Medical Miracle, a Friendship, and the Weird World of Tourette Syndrome, by James A. Fussell and Jeff P. Matovic
First, doctors equipped the patient with a titanium halo by placing screws through his head and cheeks. The halo was then fastened to the operating table. Next, two "nickel-sized" holes were drilled through Jeff Matovic's skull so that his neurologist, the late Dr. Robert Maciunas, could place a pair of electrodes into his Tourette Syndrome-tormented brain. During the entire operation, Matovic was awake and talking.
In a second procedure, doctors placed battery packs under Matovic's pectoral muscles. A wire connected the batteries to the cranial electrodes. Later, the stimulators in Matovic's chest were activated with a handheld computer. Minimizing his drastic physical and vocal spasms meant "tuning the orchestra in his head."
When the right frequencies were found, Matovic, then 31 and suicidal, experienced an inner and outer standstill most of us dismiss. While Matovic isn't technically "cured," he is to the naked eye.
Matovic was the first person to have his Tourette Syndrome controlled through deep brain stimulation (DBS), a treatment previously limited to other movement disorders. As a result, University Hospitals benefitted from a multi-million dollar grant to study the effects of DBS on Tourette's sufferers. In phase one of the clinical trial, all eight participants survived the operation, and five saw immense changes comparable to Matovic.
This story merits a book: Ticked, A Medical Miracle, A Friendship, and the Weird World of Tourette Syndrome (Chicago Review Press, $26.95, excerpted here). Matovic is listed after Kansas City Star reporter James Fussell as the book's co-author. However, on the cover Fussell's name is in larger font and he is the "writer."
Fussell believes he is Matovic's ideal biographer because Fussell also suffers from Tourette Syndrome. Their shared diagnosis is exactly why, as a fellow journalist, I argue that this book was written by the wrong person.
Fussell inserts himself into Matovic's saga where he isn't needed. On page 86, he asks, "And now that Jeff had chosen me, I wondered, could I really write a book?"
That question may leave readers feeling duped out of $30. Hopefully, Fussell was instead wondering: Could I write THIS book? Can I separate my passion to tell my story about living with Tourette's from my job of telling Jeff's story about living with Tourette's?
The answer is no. Since Fussell feels such kinship/hero-worship toward Matovic, his narrative is wedded to insignificant details. For example, "Jeff smiled, then threw a black pen cap at me."
Matovic's "Miracle Man" status doesn't make his narrative more powerful, just more newsworthy ... a decade ago. Fussell writes feature stories for a living. Why parasitically attach his ordeal to someone else's? He could have had the friendship without splitting the profits.
The best chapter is Fussell's three-page rant, "I'd Rather Have Cancer." It's the contentious, cutting story Fussell waited 50 years to write: his own.
May 9, 2013