When the tics started at age ten, Colleen Odegaard knew something was wrong. She would have movements she could not control, like blinking her eyes really forcefully and repetitively or opening her mouth wide and in quick succession. She also had words she would get stuck on and have to say out loud over and over again. But Colleen did not know she had Tourette’s Syndrome. That realization did not come until later. As a child, she simply knew that her tics and compulsions, like her need to repeatedly touch the family television or turn the light switch off and on, angered and upset her mother.
“I felt horrible shame,” Colleen says. “I knew things were going on that I could not control but I also knew that home was not a safe place for me to disclose those things.” Instead, she developed ways of masking her tics, such as putting her head down on her desk at school and making it seem like she was intently studying her textbook until the tics passed. She also developed other tics, like digging her nails into the left side of her body, to distract her from the initial tic.
Her Vietnamese mother would tell her to control herself, something Colleen could not do. So Colleen surmised that her tics, these things she could not control, made her unlovable. “I felt like I was defective and that no one would ever love me,” she says. Her parents never sought medical help or an explanation for Colleen’s behavior, so she was left to come up with her own reasoning. “I remember thinking that I had been possessed by demons,” Colleen says. “I used to bargain with God, telling Him ‘I will be so good if you can just help me stop doing this.”
For the most part, Colleen was able to hide her Tourette’s from the world. Occasionally people would notice and ask her about her tics, but she would change the subject or come up with an explanation for what they had observed. “I remember a high school boyfriend asking me why I do that,” Colleen recalls. “I asked him ‘Why I do what?” even though I knew what he meant.” As she got older, she got increasingly adept, she says, “at disguising my tics to make them look like things I was doing on purpose.”
Colleen discovered broadcast journalism at San Jose State University and knew instantly that was the career path for her. She thought that getting others to like her on air persona would translate into the attention and approval she so desperately sought from others. “I needed acceptance from other people because I couldn’t give it to myself,” Colleen says. “I figured that if I can just get others to like me, then maybe I will be okay.”
And to a certain extent, her plan worked. Colleen embarked on a successful career as a television reporter and anchor, starting off as an anchor and producer in Laredo, Texas in 1992 and moving to Charlotte, North Carolina in 1998 to anchor the morning and midday newscasts on WCNC. She has co-hosted Charlotte Today, the morning talk show on WCNC, for the last 10 years. But much of her career had the underlying narrative of her secret and her efforts to hide her Tourette’s, not just from others, but also from herself. “Whenever I heard anyone mention Tourette’s or heard anything about it,” Colleen says, “I would turn away or change the subject.” Without an official diagnosis, Colleen was able to avoid saying it aloud.
Her breakthrough came at age 30 when she was watching an episode of Oprah. Oprah was interviewing the author of Icy Sparks, a novel that centers around a character with Tourette’s. “I was bawling,” Colleen says. “I was ready to face it and admit it. I was tired of being ashamed of it.” She consulted with a neurologist who confirmed that she has Tourette’s Syndrome. “It is not like there is a blood test,” Colleen says. Instead, she met the classic profile of someone who has exhibited a series of vocal and physical tics since childhood. She was offered medication to help control her tics, but Colleen declined because, she says, “It can make you dopey. I couldn’t afford to take that chance because of my job.”
Ironically, when Colleen is on TV, her tics are largely vanquished. “When you are in your zone,” Colleen says, “you are tic free.” There have been piano players and soccer players with Tourette’s who do not display any tics when they are playing. “You won’t see me tic on the air,” Colleen says, “but if you follow me around for a bit, you will see it.”
Her viewers found out not from observing evidence of Colleen’s Tourette’s Syndrome on the air, but because she told them about it during a show when her son Anthony was a year old. Colleen had been grappling with the fact that Tourette’s is hereditary and that her children could get it as well. She did not want them to face the shame and humiliation she felt growing up with Tourette’s. “I do not want them to feel less than,” she says, describing the hit to her sense of self-worth that defined her childhood. “I knew that I was going to have to do the work on me to model that and to let them know that.”
So Colleen chose to disclose her secret on the air. It was a daunting thing to do at the time, but she now knows that, as she says, “if you take anything that is shameful and talk about it, it comes out of the dark and isn’t shameful anymore.” The audience response was overwhelmingly positive. “People were so kind and understanding,” Colleen says. “A huge weight was lifted off my shoulders.” Her disclosure also led to her serving as a resource and role model for others who have Tourette’s, and especially for parents of newly diagnosed children with Tourette’s. When they share their fears about how Tourette’s will limit their child’s life choices, Colleen reassures them with her own life. “Look at me!” she says she tells them. “I have a career in front of the camera. I have a beautiful family.”
While she proudly owns her Tourette’s and is glad to serve as a resource and role model, Colleen does not want her Tourette’s to be her defining feature. For the most part, she no longer worries about it. At home, she feels completely safe and valued. “I can tic very openly in front of my husband and kids,” she says. “They don’t care or look at me funny.”
While she still has regret for how hard her childhood was, especially now that she is a parent herself, she credits her Tourette’s with making her a more compassionate person. “I know that shame is a heavy thing to carry and you have to find a safe place where you can share your secrets,” Colleen says. “We all need places where we can be ourselves and where people will listen with kindness and love and without judgement.”
She has channeled this insight and her compassion for others who are struggling into a secondary career as a life coach. “I want to help people feel whole,” she says, “and be free of this feeling of not being enough.” Being more understanding of others also translates into having more patience with the ignorance she must sometimes combat about her Tourette’s. When someone asks her why she is turning her head or making repetitive movements, she calmly explains that she has a neurological disorder. “I have some tics,” she says, then adds, “but don’t we all.”
To learn more about Colleen Odegaard’s life coach business, visit: www.ColleenOdegaard.com