When I was about 23 I began to realize that soon I should put the driving license between the memories of the past. Even then i was limiting the use of the car to short drives and on well known roads, driving almost exclusively during the day. I was not allowed to go to pick up my girlfriend. I had ask my parents to drive me to a prearranged place and then get a lift home by the girl. Not that I was ashamed, but somehow I was embarrassed. A bit out of necessity, a bit for maturity I abandoned these social formalisms, gaining the knowledge that everyone does what he can and live as he wishes, so that this scheme that the man takes the woman home, maybe with a luxurious car, well, now makes me a smile.
Although now it may seems foolish at the time was a problem and in any case represents one of many examples of limitations that a person with Usher Syndrome is facing during a relationship.
Another example is related to the hearing aids. This is an issue that has always put me in difficultyand that affects many hearing impaired, and not only when it comes to meeting a partner. Even the brochure of hearing aids of the last few years push on the reduced size of the new BTE devices, to enhance the poor visibility to others.
In a society where the man is supposed to be perfect, hansome and strong, a man who wears the hearing aid feels different, less perfect, highlighting one of the most common psychological repercussions for the deaf or hearing impaired.
The problem is not solved yet, especially because during a passionate kiss it happened the girl wanted to kiss me on the neck, up the ear. The idea that she might discover CIC hearing aid, completely hidden, terrified me. Her insistence on licking me at any cost was a clear sign that had not yet noticed anything.
Another social formalism, if we can define them like that, presuppose the woman to hold the man’s arm during a walk. It ‘s always the man that opens the door of the restaurant, cinema or taxi. And the man who makes the woman sit at the table. But if the man is visually impaired, the roles are reversed because the man must be driven, does not see the handles, can not find the door. Again I had to abandon the rules and behave in the most convenient way. I grabb her arm, I’m behind when I have to be driven, I let her open the door, as I would inevitably miss the handle or try to open the wrong side of the door (sometimes I go to the kitchen of the restaurant instead of the toilet)
So far, some examples of practical problems. I am sure that everyone has hsi own stories, different experiences and episodes more or less funny and sad. It would be interesting to be able to read more, maybe in the comments to this post.
There is a question that, more than others, every now and then comes back and makes me feel vulnerable and insecure.
At the moment I do not have a stable relationship and I’ve never had one that lasted over a year. I have to say that I am a traveler and that more than once I’ve changed my home.
Despite this I wondered more than once: Do I terrify? that is, USHER SYNDROME IS A CONDITION THAT CAN FRIGHTEN THE PARTNER?
Although it is the type II is a debilitating disease that requires an extremely challenging involvement by the healthy partner. Even if I never met a single person who was reluctant to help, the brevity of my relationships made me think several times that perhaps, maybe unconsciously, the girls I met found them selves unprepared to deal with the idea of living next to a person who can only get worse.
I know, this consideration does not fall within the definition of love, which is certainly more blind than a visually impaired, and therefore i should wonder more about situations rather than people, but I am sure that the issue has not has worried only me.
Rationally I am convinced that the person who decides to spend his life with an Usher does not arise these questions, addressing the practical difficulties with the same attitude, which reserves to other situations of everyday life, how to take the children to school or to water the flowers, but I, we, who have the syndrome, perhaps we also have the sense of dependence on the other, fear to be a burden to somebody, require too much energy, too much attention.
I will not plead conclusions, I do not know a part of cases large enough to generalize. This is why I’d love to hear your point of views and some examples of your love story.