my experience between fear and awareness.
Writing these words isn’t easy, but is necessary. If my experience can help even one person feel less alone, then it’s worth it.
The first signs, looking back now, were already there when I was a child. Around age 12, I began to clearly notice the difficulties I had in the dark.
But deep down, I knew something was wrong even before that. I remember playing hide-and-seek or tag at night: I always ended up bumping into the same things, even a streetlight… and the same boy. At the time, it seemed like just clumsiness, but it wasn’t.
My life was already filled with a complex reality: my older brother, a year older than me, had Down Syndrome. I saw with my own eyes how he was treated: judged, teased, often excluded. This affected me deeply.
A silent fear grew within me: “Will it happen to me too?” This question haunted me for a long time, even before I had a diagnosis. The first diagnosis I received was “retinitis pigmentosa”. I still remember the ophthalmologist’s words: direct, cold, with no room for hope. He told me I would go blind. I had my whole life ahead of me, and in that moment it felt like it had been taken away from me. Today I’m 54 and I can still see, although with difficulty. But back then, as a boy, those words had knocked me down. The questions were so many, too many for a young man:
“Will I get married?”
“Will I have a family?”
“What job will I be able to do?”
And the hardest thing was that I couldn’t find answers. I had no one to truly talk to, no one who could fully understand what I was going through. During middle school, I also noticed hearing difficulties. At first they were subtle, then increasingly evident. I tried to read lips, but I never really could. At a certain point, I gave up. With time, the full diagnosis arrived: Usher Syndrome, type 2.
Giving a name to what I was experiencing was important, but it didn’t erase the burden of having traveled alone. And this is precisely what has affected me the most: the lack of communication. Not having someone to talk to, someone who says “I understand,” someone who truly listens to you. This void leaves profound scars.
Today, looking back, I feel a strong responsibility: to ensure that others don’t have to experience what I did. No one should face such a complex diagnosis alone, in silence and fear. That’s why I decided to tell my story. To tell those who are at the beginning of this journey today that they are not alone. To tell families that listening is essential. To tell society that knowledge and respect make a difference.
Usher Syndrome changes lives, it’s true. But it doesn’t erase them. You can continue to live, to build, to find meaning and relationships. And above all, you can learn not to face all this alone.
