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Ticked: A Medical Miracle, a Friendship, and the Weird World of Tourette Syndrome
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.
- GenresNonfiction
272 pages, Hardcover
First published January 1, 2013
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Displaying 1 - 15 of 15 reviews
June 28, 2020
The chapters are short and abrupt but the content of the story is all there and forward-facing. Explained by Jim and Jeff, this is an autobiographical biography of two men who have lived with Tourette's Syndrome their entire life. And how one of them had life-altering Deep Brain surgery that was able to eliminate his tics (for which he appeared on Good Morning America and Oprah's show as a medical miracle).
The two men became friends when Jim wanted to write a story and their common ground became a book that is an #ownvoices story about living with Tourette's Syndrome which is NOT JUST the outburst/curing disease. It is so much more nuanced and they demonstrate that well giving examples as their tics morphed and changed over time and their gradual understanding through conferences, science, and listening to their own bodies. Jeff's neck/head spasms cause so much frequent pain that there are several chapters in which he said he'd rather have cancer than Tourette's. There are several stories about suicidal thoughts or actual attempts. There is a woman who undresses people as her tic and there are painful stretching of fingers or actual cursing outbursts. But there's also often an OCD that's accompanying the Tourette's. Sometimes sports helps channel the movement impulses. And other times, like one particularly sad story that was shared, where he did a lot of shoe tying at the mall. He would curl down into a turtle-like ball and squeeze his energy into denying the tic. There's the tiredness.
It's eye-opening and useful information and brought me back to third grade in Mrs. Waskiewicz's class and Corey Thomas. A boy, who for me at 36 years old, knows that he had Tourette's. His tics, while likely "understood" where also very much unaccepted. We would often have to (as a whole class) fold our hands in front of ourselves on the desk and repeat "Self discipline, self control, helps me be a better person." Yes, I remember this many years later and now I could cry remembering that often it was a whole-class consequence to Corey's uncontrollable tics. I remember a lot of head twitches and pen flicking.
It's an empathetic read that anyone could and everyone should read even if it's just a few chapters.
The two men became friends when Jim wanted to write a story and their common ground became a book that is an #ownvoices story about living with Tourette's Syndrome which is NOT JUST the outburst/curing disease. It is so much more nuanced and they demonstrate that well giving examples as their tics morphed and changed over time and their gradual understanding through conferences, science, and listening to their own bodies. Jeff's neck/head spasms cause so much frequent pain that there are several chapters in which he said he'd rather have cancer than Tourette's. There are several stories about suicidal thoughts or actual attempts. There is a woman who undresses people as her tic and there are painful stretching of fingers or actual cursing outbursts. But there's also often an OCD that's accompanying the Tourette's. Sometimes sports helps channel the movement impulses. And other times, like one particularly sad story that was shared, where he did a lot of shoe tying at the mall. He would curl down into a turtle-like ball and squeeze his energy into denying the tic. There's the tiredness.
It's eye-opening and useful information and brought me back to third grade in Mrs. Waskiewicz's class and Corey Thomas. A boy, who for me at 36 years old, knows that he had Tourette's. His tics, while likely "understood" where also very much unaccepted. We would often have to (as a whole class) fold our hands in front of ourselves on the desk and repeat "Self discipline, self control, helps me be a better person." Yes, I remember this many years later and now I could cry remembering that often it was a whole-class consequence to Corey's uncontrollable tics. I remember a lot of head twitches and pen flicking.
It's an empathetic read that anyone could and everyone should read even if it's just a few chapters.
July 30, 2013
If this book doesn't move you, I'm not sure what will. I was Jeff's 9th grade basketball coach and the Young Life leader of the school during the events described. I fondly remember Jeff as a talented athlete and a fine young man. The author has brought to life Jeff's story of the progressive deterioration of his life through Tourette's Syndrome and his sudden relief through the work of a courageous doctor and his team at University Hospital in Cleveland. As well as inspirational, I found this book to a very important personal look at the suffering that touches all lives surrounding someone who is in long term pain.
August 15, 2013
Ah, the pain. It's an education, this book. Now informed about the truly awful symptoms/pain of Tourette Syndrome I feel as though I was completely ignornant of this illness. Some of the descriptions of the spasms and 'ticks' grow wearisome after awhile. It is the friendship between the two sufferers and the revelation of the illness that makes this book so good. Books about medical conditions are very difficult to write. The appeal factor is somewhat low, as most people have their own physical issues and find it too close to home to read about someone else's pains.
February 6, 2021
I didn't love the guy's style of writing, but the story was good enough. The author has Tourette's, and he was inspired to write about another guy with Tourette's who'd had an experimental brain surgery that helped him live a "normal" life. The book is mainly about Jim and his surgery, though the author touches on his own experiences, and a large part of the book focuses on the friendship he builds with his subject.
June 28, 2013
This was a really fascinating and educational book. It did a great job of explaining a condition I was somewhat aware of, but never fully understood. I came away from it with a huge level of admiration for the author and his subject, for the amount of effort they have to put out just to experience day to day life the rest of us take for granted, and their ability to keep plugging along with grace and love in their hearts. It was sad to read of the cruelty and ignorance they have encountered over the years. I hope that this story will help to dispel some of that ignorance and generate a little more compassion among the general public.
I have read better written memoirs, but none with more heart or a more heartwrenching story. I hope everyone who comes across this book will have the chance to read it and share it with others. We can all learn something from it about compassion and courage, and I have the deepest admiration for Jeff and Jim, their families, and the amazing medical professionals who cared for them. How lucky we are to have such people in our world.
Readers interested in the medical mystery aspect of this story may also enjoy Brain on Fire, another memoir I recently completed and enjoyed.
I have read better written memoirs, but none with more heart or a more heartwrenching story. I hope everyone who comes across this book will have the chance to read it and share it with others. We can all learn something from it about compassion and courage, and I have the deepest admiration for Jeff and Jim, their families, and the amazing medical professionals who cared for them. How lucky we are to have such people in our world.
Readers interested in the medical mystery aspect of this story may also enjoy Brain on Fire, another memoir I recently completed and enjoyed.
August 16, 2016
This is a terrific story that makes painfully clear the physical struggles of someone with Tourette's Syndrome, as well as the difficulty in being understood. The book's structure is interesting, as it's told first-person in chapters dealing with the author, Jim, and 3rd person when telling the story of Jeff. It's the result of a unique collaboration that gives the book heart even when it deals with such dark subject matter. The story ends up being as much abuot the struggles of Tourette's as it is about the struggle to connect, and I liked that.
June 30, 2013
A very inspiring book about a not so well known condition - Tourette syndrome. I had no idea how debilitating it could be and the daily struggles to do the simplest of tasks. A VERY good book and easy to read. Much harder to put down once you've started. Written by an author in my own fair Kansas City.
April 29, 2014
Excellent book. True story of perseverance, friendship, faith, and a medical miracle. Jeff Matovic is a John Carroll grad and his stories of people, Dr. Helen Murphy in particular, and St Francis Chapel bring back beautiful memories to me. JCU was a good place to and for him when he needed it. Another reason to make me proud to be an alum.
November 23, 2015
I thought I knew about Tourette Syndrome before reading this book. I knew it wasn't merely the "swearing disease" where sufferers are compelled to shout profanities. I knew it had something to do with brain neurons misfiring. I knew the tics could affect all parts of the body and could also impair mental function. I knew that drugs had limited success.
The list of things I didn't know is far longer. I didn't know how much a Tourettes victim suffers. I didn't know how violent the tics could be (violent enough to knock holes in walls and cause bruises and bleeding). I didn't realise that a tic repeated over several years could cause injuries to vital body parts like vertebrae. I didn't understand how incapacitating the disease could be.
This is the story of two men with Tourette Syndrome, one (the author, Jim) with a comparatively mild case and and the other (Jeff Matovic) with a much more debilitating case. Jim's case mostly manifests itself in a head tic which has left him in constant chronic pain. Jeff was practically an invalid before a surgeon decided to take a chance with a non-approved treatment called Deep Brain Stimulation which had seen some success in related disorders. The treatment could improve Jeff's life or potentially end it--he was at the end of his rope anyway.
I appreciated the way the book risked letting the human side of the disease show. Both men were willing to show their anger, their despair, and their thoughts about suicide. In a world where people are lauded for suffering gracefully and cheerfully, this honest approach took a lot of courage.
There were parts when it dragged, mainly during the long, long story of how the book came to be. And the ebook is carelessly edited with random symbols and numbers cropping up in the middle of the text, usually during a particularly emotional moment. ("I don't want help!" he screamed. "Nobody can help me! Nobody 139 can fix anything.") It always threw me out of the narrative.
The list of things I didn't know is far longer. I didn't know how much a Tourettes victim suffers. I didn't know how violent the tics could be (violent enough to knock holes in walls and cause bruises and bleeding). I didn't realise that a tic repeated over several years could cause injuries to vital body parts like vertebrae. I didn't understand how incapacitating the disease could be.
This is the story of two men with Tourette Syndrome, one (the author, Jim) with a comparatively mild case and and the other (Jeff Matovic) with a much more debilitating case. Jim's case mostly manifests itself in a head tic which has left him in constant chronic pain. Jeff was practically an invalid before a surgeon decided to take a chance with a non-approved treatment called Deep Brain Stimulation which had seen some success in related disorders. The treatment could improve Jeff's life or potentially end it--he was at the end of his rope anyway.
I appreciated the way the book risked letting the human side of the disease show. Both men were willing to show their anger, their despair, and their thoughts about suicide. In a world where people are lauded for suffering gracefully and cheerfully, this honest approach took a lot of courage.
There were parts when it dragged, mainly during the long, long story of how the book came to be. And the ebook is carelessly edited with random symbols and numbers cropping up in the middle of the text, usually during a particularly emotional moment. ("I don't want help!" he screamed. "Nobody can help me! Nobody 139 can fix anything.") It always threw me out of the narrative.
May 14, 2014
This was a very informative read about Tourette's Syndrome. Even as a medical professional I felt there was a lot I wasn't aware of regarding this disease: the diverse symptoms, the associated pain, and the new possibility of a dramatic cure. While I appreciated that the author also struggle with Tourette's Syndrome, when the text jumped back and forth between the main subject and the author's life it felt a bit awkward. I didn't mind the two perspectives (the variations were enlightening), but describing how the book came to be and the interview process felt redundant.
December 10, 2015
people's stories are always interesting. After reading several about people with Tourettes it has gotten a bit depressing. my son has very mild tics, most people would think he's a bit odd at times but otherwise would have no idea. So grateful it isn't worse for him. now I want my husband or son to read these books to see if they help them gain insight into their disorder. in all these books they do tend to drag on.
September 8, 2013
I enjoyed the first half of this book, but the second half was so self-congratulatory it was almost painful to wade through.
June 26, 2014
Learned so much about the Tourette Syndrome. Fascinating story of groundbreaking medical treatment and the science behind it. Written by a tourette sufferer about a tourette sufferer.
March 29, 2016
I very much appreciated this insight into the nightmarish struggle of Tourettes. Gives me a much better understanding and higher sensitivity toward other sufferers. Very inspiring!
July 30, 2016
Three and a half. Really interesting, makes a lot of things make sense personally. A bit of a "dry" read though.
Displaying 1 - 15 of 15 reviews