A few days ago, my sister messaged me on Facebook about a documentary regarding Charcot-Marie-Tooth disease (CMT) called “Bernadette.” I hadn’t heard about it before, but because I had nothing else planned for the evening, I decided to check it out. It’s a touching film, but what struck me was not the information about CMT — I knew most of that — but how the film tells the story.
The narrative of “Bernadette” revolves around Bernadette Scarduzio (currently a social media coordinator for the Hereditary Neuropathy Foundation) and how her disease affects her everyday life. Throughout the film, viewers see Scarduzio struggle with different surgeries, therapies, and ways of mitigating her pain. The film also presents interviews with Scarduzio’s physicians, friends, and family. But despite all of that, the film isn’t depressing, it’s inspiring. And it made me consider the value of sharing and spreading awareness of CMT.
Even though “Bernadette” shows scenes from what must be some of the darkest moments in her life, the film is — at least to me — a documentation of a triumph over CMT. And in my mind, this demonstrates the importance of people-focused narrative stories amid the sea of “hard news” science reporting.
The movie features deeply personal scenes about Bernadette’s spirituality, family, social life, and romantic life. Without these scenes, I think the narrative would be simply about the power of CMT.
Too often, when I go down the rabbit hole of online information about CMT, I think so much of it is about all the different ways this disease can screw up someone’s life, and it’s tempting to just be bitter about it.
But stories such as “Bernadette” give people who have CMT the room to express themselves without allowing any room for the disease to take control of the narrative.
Maybe these stories are what is lacking from much of the media coverage. And perhaps that is what Scarduzio means when she says in the film that she wants the world to know about CMT.
It’s not just about making sure as many people as possible know the facts and figures about CMT, but also it’s making sure the world knows that there are people behind those numbers — people who each have their own stories. After all, it is the most common inherited peripheral nerve disease.
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.