My life is not a straight line, but a mosaic of contrasts.
Imagine being born into a soundless room, where the floor trembles beneath unsteady feet. My name is Marco, and from my very first breath, I had to learn that the world is not merely heard with the ears; rather, one must “bite” into it with sheer willpower and perceive it with the entire body.
My parents were my roots in soil that sought to make me fall.
Thanks to their tireless dedication, I began motor rehabilitation and an oralist program using the De Filippis method right from the start. Although my hearing aids conveyed only vibrations, by the age of three, letters had become my toys: I built syllables and sentences so as not to remain a prisoner of silence.
Music therapy played a fundamental role: the drums made my chest resonate, and the piano vibrated beneath my fingers, teaching me the rhythms of space and time. Throughout my education, my teacher Irene was a special light—an unforgettable figure and a safe harbor who guided my personal growth and supported me when the world seemed too difficult to decipher.
I defied every limit, earning a degree in Engineering and a PhD; a cochlear implant opened up the world of sound to me, and—to some extent—that of voices and words as well. Yet, just as my mind was soaring, the curtain began to fall. Around the age of forty, a diagnosis of Usher syndrome type 1B came as a violent shock: my field of vision narrowing, the light fading, and the world transforming into an ever-tightening tunnel.
Amidst the encroaching darkness, I have found my sanctuary: the water. When I immerse myself in the pool, my limitations stay on the deck. In the water, I am weightless; I am free. There are no sharp edges, no tripping hazards, and no risk of collapsing to the ground because my balance fails me. Even in dim light, my strokes become a reliable compass. There, amidst the blue reflections, I am the captain of my own life.
Yet, out of the water, the world becomes hostile once more. I live in a small town in the province of Brescia, where essential services are often a mirage and connections to the city are grueling ordeals. This combination of isolation and inadequate transport forms an invisible cage, forcing me to remain almost entirely dependent on my parents and family.
That is why I am issuing a call to action: we need a form of volunteering that is “barrier-free.” We do not seek pity, but autonomy. We need support networks that allow us to step beyond the confines of our families—to reclaim the right to move about without a missing bus or a dark street becoming an insurmountable wall, and to live life to the fullest.
Despite the shadows, my hope remains undimmed. I firmly believe in the progress of scientific research and still dream of a future filled with beautiful things. Sharing one’s story means feeling less alone; standing together is the only way to transform our “rarity” into a collective force capable of awakening consciences.
