Life with Lily: Finding My Voice

Hello everyone! I’m so excited to launch my quarterly blog series as your 2025 National Ambassador! This first “Life with Lily” post is deeply personal, a reflection on my journey with Charcot-Marie-Tooth (CMT) disease and an exploration of the nuanced realities of the disability experience. I want to share my story, not just as a narrative of challenges overcome, but as an invitation to understand the complexities, the contradictions, and the profound growth that can emerge from living with a disability.

My CMT story began in my early childhood, marked by physical differences that, in their initial rapid progression, abruptly disrupted what had been a typical, mobile childhood. I quickly experienced difficulty moving around my world when my feet began “turning in” – also known as clubbed feet. These swift changes were disorienting, forcing my young body to adapt quickly and unexpectedly. The journey to diagnosis was a long and often frustrating one, filled with misdiagnoses and uncertainty, until finally, CMT 1e and HNPP (Hereditary Neuropathy with liability to Pressure Palsy) was identified when I was four years old.   Those early years were a whirlwind of medical interventions, including reconstructive surgery that fundamentally changed my relationship with my body. Learning to walk again, spending a year navigating the world in a wheelchair – these experiences shaped my understanding of both my own resilience and the accessibility barriers many others also face.

Growing up with CMT has been a complex dance between challenge and growth. When I was younger, I felt a profound sense of shame, a desperate desire to hide my differences, to fit in seamlessly. The fear of rejection, of being seen as “other,” was a heavy burden. But within that struggle, seeds of resilience were being sown. I discovered the transformative power of community, the profound connection that comes from sharing experiences with others who truly understand. Meeting people who knew firsthand the daily realities of living with a disability, without needing explanation or judgment, was a turning point. It was the beginning of transforming shame into pride, of recognizing the unique strengths and perspectives that disability can foster.

Lily S. during an interview at MDA Summer Camp.

A pivotal part of this journey was my experience at MDA Summer Camp as a child. It was there, surrounded by other kids who “got it,” that I first truly felt a sense of belonging. The camp was more than just a place to have fun and be a kid; it was a place where I found my voice. I was given opportunities to speak about my experiences, to share my story with donors through interviews. Those early interviews, though I was just a young child, were the first steps on my path to advocacy. They gave me the language to articulate the complexities of living with CMT, the challenges, the frustrations, but also the resilience and the hope. It was the beginning of understanding that my story had power, that it could connect with others, inspire change, and make a difference. My advocacy has only grown from there, culminating in advocating for disability laws in Congress this year and now serving as your MDA National Ambassador.

CMT is a progressive condition, and with its progression comes a unique set of challenges. The gradual loss of function, the “little deaths” as some describe them, is a constant process of adjustment and grief. There’s the grief for what was, for the physical abilities I once had, and the grief for the future I might have imagined. Disability is marked by these losses, these constant adjustments to a changing physical reality. It’s not just the loss of physical function, but also the loss of expectations, the loss of a certain kind of normalcy that society often dictates. There’s also the very real fear of what lies ahead, the uncertainty of how CMT will continue to impact my life. These feelings are layered and complex, often existing side-by-side with hope, determination, and an unwavering spirit.

Living with a disability also means navigating a world that wasn’t designed with me in mind. From seemingly small obstacles like heavy doors and missing curb cuts to larger systemic barriers, I’m constantly reminded that accessibility is not a given. These experiences fuel my passion for advocacy, my commitment to creating a more inclusive and equitable world. I believe that everyone deserves to feel welcome and valued, and I’m determined to use my voice to push for change.

One of the most significant challenges, and yet another catalyst for growth, has been the lack of representation. Growing up, I rarely saw people with disabilities reflected in mainstream media, in the stories we tell about ourselves. This absence can be profoundly isolating, making it harder to forge a positive disability identity. It’s why I’m so passionate about sharing my story, about amplifying the voices of others in the disability community, and about working to create a world where everyone sees themselves reflected and celebrated.

Lily S.

My journey with CMT has been a complex tapestry woven with threads of challenge, resilience, community, and growth. It’s a journey marked by both profound grief and immense joy, by moments of frustration and unwavering determination. It’s a journey that has taught me the importance of self-acceptance, the power of advocacy, and the transformative strength of community. I am deeply honored to serve as your 2025 National Ambassador, and I look forward to sharing more of my story, connecting with each of you, and working together to build a more inclusive and accessible future. Thank you for being a part of this journey with me.