Some would say, “those who don’t care, don’t matter. And those who don’t matter, don’t care.” But what do you do when your own kin doesn’t accept the fact that you are disabled because of strabismus and that your side effects from VT are serious and debilitating?
I had another argument today with my mother about the fact that my sound sensitivity has become much worse as a result of VT. So much so that I will spend my birthday alone in silence because I simply can’t be with more than a couple people at a time. Parties, group dinners at restaurants and many outings are out of the question. This will be my second birthday alone in my three years of VT. It’s not that I don’t have friends! I have a lot but I can’t be with more than a couple at a time and even then, if we’re in a restaurant with background music or a loud table nearby, it’s mental torture for me to concentrate on what people are saying. So it’s simpler to be alone. My mom simply doesn’t believe that VT could influence my other senses. It doesn’t help that my mom is deaf in one ear and isn’t as bothered by sounds as I am. Beyond her partial deafness, she doesn’t believe that I have double vision and that I’ve had it for three years because of VT.
I think that since I look “normal” after two operations, it is very difficult for anyone to believe that I am cross eyed. Even my mom who can clearly recall me with my divergent eyes doesn’t accept the fact that I see people with two heads sometimes or that the divider lane on the road doubles when I drive.
Unfortunately, it’s not just my mom who doesn’t believe me or doesn’t take into consideration my limitations, I get it from others to whom I’ve repeatedly told that I can’t drive at night or in the rain and that I have to avoid loud places. They just don’t get it or they easily forget.
Part of me just wants to be quiet and not tell people what they can’t understand or are unwilling to accept. But then I am cutting off a huge part of myself. It’s like being in the closet about one’s sexuality or practicing a religion in secret because one is hiding from the Spanish Inquisition. I think I have more compassion for political prisoners now!
How do you manage to communicate your turmoil or your triumphs when you are inhabiting planet 2D and everyone else is in 3D la-la land and can’t empathize with you? HELP!!!! I’m drowning here.