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Published: Thursday, February 21, 2019 @ 5:00 PM
— A fellow reporter once told me, "reporting the truth includes sharing our own."
I'm writing this story to share my truth. I'm opening up about my journey with Tourette Syndrome for the first time publicly.
I hope sharing my story will help families in the Miami Valley and beyond who are facing a similar road ahead as they cope with a neurological disorder that has impacted my family in a meaningful way.
I've never really liked talking about my Tourette Syndrome, it brings up uncomfortable conversations and questions and unfortunate jokes.
But that all changed just a few weeks before Christmas when one of my favorite reporters, CBS News Correspondent David Begnaud, did a story opening up about his journey with Tourette's.
I talked to Begnaud about his decision to open up in a one-on-one interview.
"All I wanted to do was help other people," Begnaud said. "I mean who else wants to talk about why you walk around looking a little silly? Why you twitch your head or why you twitch your tongue? You know it's not your most attractive attribute, so to speak, but it's a special attribute. You know why? Because it makes me and whoever's (reading) this relate."
This is the first time I’ve talked about my #TouretteSyndrome publicly. My profound thanks to @NikkiBurdine for starting me down this path 3 years ago and to @DavidBegnaud for INSPIRING me to share my story to help others. Thurs. 5:30 @whiotv @TouretteAssnhttps://t.co/BTmcY5BJxd— John Bedell (@JBedellWHIO) February 19, 2019
Springboro High School senior Brett Tibbits and Mad River Middle School seventh grader Alex Bryant can relate. They have Tourette Syndrome. They both agreed to talk to me for this story.
Brett was diagnosed at Cincinnati Children's Hospital years ago. Alex was diagnosed just a few years ago at Dayton Children's Hospital.
Their journeys have had their rough patches.
"There were probably a couple jokes junior high time you know where people were thinking like oh 'So you're the kid that's gonna blurt out cuss words,'" Brett told me.
"When I was in second grade, there were a lot of kids who prevented me from having a lot of friends because they were really scared," Bryant said.
But both young men have overcome and they're thriving in school, socially and in their extracurriculars.
Brett and Byrant are both talented musicians — Brett plays acoustic and electric guitar and Alex is a drummer.
My tics started when I was in first grade. By the time fourth grade rolled around, I was worried.
"You came to me and said that, you know, 'mom,' — it was starting to bother you — 'why is this happening,'" my mom, Alice recalled. "(You told me), 'I need to find out.'"
My journey with Tourette Syndrome officially started at Rainbow Babies and Children's Hospital in Cleveland in the summer of 1998. That's where we met Dr. Max Wiznitzer. He's one of the most reputable child neurologists in the country.
Dr. Wiznitzer was the first person to tell me my tics were caused by Tourette Syndrome. Tourette's is a chronic tic disorder with a genetic component and no known cause.
"There's not one specific gene we can point to and say, 'Ah! That's the Tourette's gene,'" Dr. Wiznitzer said. "It's thought to be combinations. But what's thought to be at the bottom line is a control system that is in place in the brain."
Tics are random, uncontrolled movements and vocalizations.
"Examples of these are noises such as throat clearing, sniffing and snorting or motor activities like eye blinking, head shaking or shoulder shrugs," Dr. Wiznitzer said.
Tics are not seizures and not all people with TS shout obscenities. In fact, less than 10 percent of people with Tourette Syndrome do.
"But that's what most people believe," said Dr. Wiznitzer. "Which is really a myth. We know that. That's the exception to the rule."
Tics get worse with stress or excitement and they become less severe with age. Medication can help, but I've never taken any.
I’m opening up about my lifelong journey w/ #TouretteSyndrome at 5:30 on @whiotv. One of my favorite parts of this story was traveling to Cleveland with my parents to reconnect with child neurologist Dr. Max Wiznitzer @UHRainbowBabies. He diagnosed my TS in 1998. @TouretteAssn pic.twitter.com/afUDT3ovW2— John Bedell (@JBedellWHIO) February 21, 2019
Some of my tics include my eyebrows frowning and jumping, my eyes close and dart around. I have some head nodding and vocal tics too. But focusing on my on-air work is one of the things that stops them.
"When you're on the air, you're focusing on something else and the tic basically is not important — your mind is in a different place," Dr. Wiznitzer said.
When he diagnosed me 21 years ago this summer, Dr. Wiznitzer emphasized the importance of, "education, education, education!" He wanted my parents and me to learn as much as we could about Tourette Syndrome. He encourages all his patients to become what he calls, "informed consumers."
"If you're an informed consumer and understand what's going on, then basically you're in control." Dr. Wiznitzer said when we reunited in Cleveland last month.
This is what my dad, Terry, had to say about reconnecting with Dr. Wiznitzer: "It was like, almost like talking to an old friend. It's almost as though he was telling us, 'See? I told you it was going to be OK. He's gonna turn out all right.' And sure enough, he was right. Twenty-one years later."
Remember how I said I see myself in Brett Tibbits and Alex Bryant? Just look at what Brett's mom and my mom said in separate interviews without any prompting:
My mom remembers telling me as a child, "'It's a part of you. It doesn't define you.' And my sharing with you that time back in fifth grade that when I see you I just see John. I don't see Tourette's."
Brett's mom, Kristin Tibbits told me, "Tourette's is near and dear to our family and it has affected us. But like I've always told Brett: 'It's a part of you, it doesn't define you.' So it makes you who you are."
Tibbits is a mom who understands Tourette Syndrome isn't a bad thing: it just makes us unique.
Later in the interview, her son told me why he agreed to talk to us for this story.
"For an interview like this, if this can serve as any sort of guidance to someone who has Tourette's who's maybe not quite so comfortable with it or is newly diagnosed," Brett said.
.@whiotv As a part of sharing my lifelong journey with #TouretteSyndrome, I put together a list of 5 people who also happen to have Tourette's who inspire me:@NikkiBurdine @DavidBegnaud @TimHowardGK@AnthonyErvin— John Bedell (@JBedellWHIO) February 21, 2019
And #JimEisenreich @TouretteAssn https://t.co/YPNAXAXVfX
Or, as Alex put it, "(I always tell people), I can do the same things you can do." You just happen to have Tourette Syndrome, I asked. "Yeah," Alex said with a smile.
I sent Begnaud a thank you note after his story ran in December. I told him I was thinking about sharing my journey with Tourette's after seeing his piece, but explained I was still hesitant about opening up.
He wrote back, "barrel through those barriers so that you too may inspire someone." That spoke to my heart and is what sparked this story. It also got me to thinking about the teal bracelet — teal is the color for Tourette's awareness — I wear every day that reads, "INSPIRE." It's time to pay forward the inspiration Begnaud gave me.
"Why not (do the story)?" Begnaud asked. "If it can help someone else? And then I heard from you. And if it can help you, and you doing this story helps someone else, then you know what? That's the great thing about being a human being: helping others. I want to do more of it. I find it infectious."