This is my story. I’d like to start from the beginning — from childhood itself.
It should be, for everyone, a magical space, the place where everything is possible, in potential. The garden where the person you will one day become is nurtured. That’s the ideal. Then, there’s life — with all its imperfections. In my garden, there’s a hole. A small, deep hollow where (almost) all the sounds of the world are swallowed up. It isn’t very big, and it’s hidden behind a beautiful magnolia tree. No one noticed it at first. The only one who realized I was deaf was my mother. Mothers always know everything, and they never make mistakes. At least, not intentionally.
What a battle she had to fight against everyone: first my grandmother and my father, her sisters, and the whole family.
By the age of three, I was already reading lips and answering their questions. I mispronounced some words, but most children do. However, when they called me from behind… I didn’t turn around. It was clear something wasn’t right.
It was hard to convince them to take me to a specialist. They were afraid. I think they already knew everything but preferred simply to ignore it. Too painful to admit. It was the year 1979.
“She’s deaf but intelligent… don’t worry, she’ll do just fine. We’ll fit her with hearing aids — they’ll perfectly compensate for her hearing problem.”
And so, they discovered my first disability. No one thought, back then, to run a vision screening. Genetic testing was unthinkable at the time. Of course… it’s true, we’re talking about many years ago. And yet, the first description of conditions involving both hearing and sight problems in some children dates back to 1858. Only in 1914 was this syndrome further defined by the doctor who gave it its name: Usher.
We are now in 2025. I hope that today all ENT specialists are prepared, competent, and informed about this syndrome — mine. An early diagnosis is now possible through genetic analysis. And it is important. Essential. When in the future (hopefully very soon) we will have a therapy, it will be even more so.
I was a cheerful, sweet, and somewhat gentle child. Today I can tell you that I was a frightened child. That deep hole scared me. I felt the weight of being different, and the fear of not being loved because of what I had — or of being loved only because I was “sick.”
I felt guilty for not being born healthy, normal. I was just a child, like all the others. With my own particular trait that only needed to be seen and listened to.
Unspoken words, denied truth — they built walls and barriers. Now that I am a mother, I know my parents felt even more guilty than I did. There is an undergrowth of pain that we share. It must never be hidden or covered. With courage, strength, and determination, you can only learn to know it — and, as a result, to know yourself.
I tell you this in these words because perhaps, in this way, you’ll be able to help your daughter, your sister, your patient a little more. And maybe, you’ll understand a bit better the silence — and those who live in it.
