U: Thank you, Mirella, for this interview.
You have already shared your testimony as the mother of a person with Usher Syndrome. We would like to ask you some questions aimed at helping readers understand the situations, thoughts, and feelings that a parent of a person with Usher Syndrome may experience.
In your testimony, you mention the “obstacles” that your son A. has faced. What were those obstacles?
You also mention strategies you adopted to deal with those obstacles. What were those strategies?
M: The obstacles, related to the progressive worsening of his eyesight, concerned on one hand a potential reduction in his independence when moving around, and on the other a greater difficulty in face-to-face communication. For the first type of difficulty, A. attended orientation and mobility courses at the Chiossone Institute for the Blind and Visually Impaired, where he learned to use the white cane effectively. Moreover, having cultivated meaningful friendships and relationships means that the less accessible movements he cannot manage alone can be done in the company not only of family members but also of a wider circle of people.
As for me, I tried to overcome my fears for his safety by encouraging—or at least not hindering—the greatest possible independence. Naturally, I try to make myself available whenever he needs to be accompanied. As for communication, the main obstacle was the gradual loss of lip-reading ability as his sight worsened.
This obstacle was only minimally overcome through the cochlear implant he received as an adult, which mainly helps him perceive environmental sounds. Fortunately, his spoken language is quite clear, which allows him to make himself understood even by strangers or acquaintances (for example, when he goes shopping). To understand what others are saying, he mainly relies on a system he invented himself: he asks people to write messages in block capitals on his hand. With close friends or deaf people, he also uses, albeit in a basic way, tactile Sign Language (LIS). For long-distance communication, he makes great use of email or WhatsApp messages, often quite complex, thanks to his excellent writing skills. Personally, in addition to using written messages for distance communication, I also write on his hand, and whenever I can, I include some elements of tactile Sign Language (still limited for now—I’m trying to learn).
U: And today, what are your thoughts toward your children?
M: My children are adults now, and both have families of their own, which are rightfully at the center of their concrete and emotional world. Beyond that, I believe I can say that with both of them I have a very good relationship—full of affection and, at the same time, respectful of each one’s individuality. I try to help them with practical things, for example by taking care of my grandchildren when needed or when the opportunity arises. We also sometimes manage to carve out moments of greater intimacy, and this is a great joy for me: talking with them not only about practical matters but also about how we feel and how we deal with the ups and downs of daily life.
Recently, during a delicate time for me due to health problems, I truly experienced their affection and closeness firsthand. Sometimes, looking back, I think about the mistakes I’ve made; I regret having been, in certain phases of life, a bit too strict or having struggled to fully understand them. However, I trust that the deep affection that binds us is stronger than painful memories and any resentment tied to the difficult moments that every deep relationship inevitably goes through.
U: Thank you, Mirella, for the kindness and grace with which you answered our questions.