Seeing CMT on National TV Was a Pleasant Surprise

When Bernadette Scarduzio, a Charcot-Marie-Tooth disease (CMT) patient-advocate and star of the CMT documentary “Bernadette,” was in the midst of filming her documentary 10 years ago, she often thought about all the celebrities that appear in movies and on television. She wondered if any of them shared her diagnosis, could relate to her CMT struggles, and could feel her CMT pain.

On Sept. 28, Scarduzio, along with many of us in the CMT community who have wondered the same, got an answer when country music icon Alan Jackson spoke candidly in an interview on the “Today” show about his career, family, tours, and the CMT diagnosis he received 10 years ago.

The news pleasantly surprised many of us, coincidentally at the tail end of CMT Awareness Month.

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Almost immediately, posts about Jackson’s announcement flooded many CMT social media groups, and I received a small flurry of messages.

Frankly, it was a lot to process. So, I was grateful when Scarduzio reached out to me offering to chat, so we could both take some time to digest it all and discuss what this news means for us as CMTers. She had also received numerous messages from friends, family members, and co-workers about how CMT was a major topic on a TV segment being broadcast across the U.S.

“I’ve been reluctant to talk about this publicly and to my fans. I have this neuropathy — a neurological disease. It’s genetic. I inherited it from my daddy. It’s called CMT.” — Alan Jackson

When Scarduzio heard Jackson say that he had inherited CMT from his daddy, she felt chills. Having also inherited CMT from her father, she said she immediately felt a kinship with Jackson.

“From one person with CMT to another, I just want to thank him for talking about CMT,” Scarduzio said.

“In some ways, [being open about my CMT diagnosis] is a relief because I was starting to get so self-conscious up there about stumbling around.” — Alan Jackson

Watching Jackson talk about CMT on his “Today” segment reminded me of the old adage, “Those who mind don’t matter, and those who matter don’t mind.”

Many CMTers, including Scarduzio and me, are sometimes self-conscious about our gait, clumsiness, and propensity to fall on our face.

“When [Jackson] said, ‘I don’t want [fans] to think I’m drunk on stage,’ I was like, ‘That resonates so much with me.’ Because sometimes when I would go out in the past, people [would] look at me and say, ‘Wow, she must be wasted,’” Scarduzio said.

Indeed, some folks always seem ready to assume the worst. But when I saw Jackson’s wife, Denise, sitting beside him during his interview, it reminded me that there will also be friends and family who are willing to support us and care for us when we need them.

Seeing the outpouring of love Jackson has received from his fans further comforted my heart.

“I’m not saying I won’t be able to tour. I’ll try to do as much as I can.” — Alan Jackson

There are times when CMT just sucks. During such times, I worry about how much the condition may take away from my life.

However, just as Jackson said he is determined to continue touring for as long as he can, and that his love of music will endure, I know that CMT can never take away the core of who I am.

I’m happy for Jackson, and I’m glad that his segment reminded me to keep fighting.

Raising awareness

I don’t know if Jackson has any desire to interact more deeply with the CMT community, or if he plans to talk more about his life as a CMTer. Maybe he will, maybe he won’t. It’s up to him to decide.

But just by being open and public on the “Today” show, I know he made an impact. Until I saw the interview, I had never imagined that anything on that show would resonate so personally with me. In terms of raising awareness, I’m sure there are at least a few more people in the world Googling “CMT” — with the intention of learning more about Charcot-Marie-Tooth, not Country Music Television.

I can’t imagine that being anything but good for the CMT community. Hopefully, it will help efforts to combat the disease often described as “the most common neurological disorder you’ve never heard of.”

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Note: Charcot-Marie-Tooth News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.