FSHD

My Journey with FSHD: A Life of Exploration and Resilience

From childhood to the age of 32, living with Facioscapulohumeral Muscular Dystrophy (FSHD) has been a journey of self-discovery, resilience, and adventure. For the longest time, I wasn’t aware of the condition that was shaping my physical abilities. In school, I was always the last to finish, both academically and physically. I wasn’t as active as my classmates, often dealing with shoulder pain if I stood too long, my chest bent forward, and my abdomen protruding. I couldn’t lift my hands above my shoulders or smile properly, and my walk was often misinterpreted—people asked if I was walking like I was drunk. Running felt out of reach, too. Yet, none of this held back my curiosity for the world around me.

Despite the challenges, I was a passionate explorer. After school, I’d cycle around the village every evening and often walked 5 kilometers to school, deliberately taking different routes just for the joy of exploration. In college, my love for visiting new places grew stronger. I traveled solo across the country, soaking in everything from mountains to islands.

It wasn’t until I was 30 that I discovered the actual reason behind my physical struggles—FSHD, a genetic muscle disorder that causes progressive weakening of the muscles, especially in the face, shoulders, and upper arms. By then, I had already traveled solo and with friends to places all around the country, without ever letting these challenges stop me. I never let FSHD define me.

Even now, as my condition has progressed, and I can barely walk more than 2 kilometers or run more than a few meters, I continue to focus on my abilities, not my limitations. Yes, I can’t lift my hands above my shoulders, and there’s often pain. But I never dwell on these obstacles. My partner, my family, and friends have been my greatest sources of strength, always supporting me and encouraging me to pursue my passions.

FSHD is unpredictable. I don’t know how long I’ll be able to walk without needing a wheelchair, but I refuse to let that stop me from dreaming. My partner, my dog, and I still plan to travel around the country in a camper van, and when the time is right, explore a few more countries together. So far, I’ve achieved everything I dreamed of. Now, I just need to ensure I’m always surrounded by the right people, in the right places to achieve more dreams.

Living with FSHD has taught me to cherish the present, be kind, stay resilient, and never stop exploring. 

It’s not about how far or fast I can go anymore—it’s about continuing the journey, with creatures l love the most.