(Photo Illustration - MetroCreativeConnection - Letter to the Editor)

I am writing to share something that moved me deeply. As someone living with Charcot-Marie-Tooth Disease, or CMT, I know firsthand how few people have ever heard of it. Even in our own community, most people have no idea what CMT is or the daily struggles that come with it. That is why discovering Sadie Rowan’s song “Not MS Not Close,” from her album “A Fault in the Frame — The CMT Album,” meant so much to me. For the first time, I heard my experience reflected in music.

The relief, the joy, the feeling of being truly seen — it is hard to put into words. This song inspires me because I live with CMT every day and know what people are going through. I have CMT type One A and her music truly inspires me.

Hearing my reality in music validates the struggles that are often invisible to others. CMT is a neurological disease that affects the nerves in the arms and legs, causing muscle weakness, loss of feeling, and many other challenges. It is something I live with every day, often in silence, because so few people understand it.

I want to thank Sadie Rowan for doing something no one else has — writing an entire album about CMT. It is something genuinely different and it matters so much more than she may ever know.

Alyccia Barker

Parkersburg