My husband has Ushers Syndrome and is slowly going completely blind. Currently he has let us know that he is having trouble understanding what he is seeing (the signal isn’t getting to his brain) and almost everywhere he goes has to be either routine or at least familiar so he doesn’t get disoriented and lost. You might think this an object of constant sorrow for him and us, but we take it in stride and enjoy the moments of laughter it affords us.
Laughter? You ask. How can you laugh at being blind?
Well, I’ll tell you.
“What is the name of those orange flowers out in the front yard?” my husband asked me one day. He loves orange. Maybe it’s because he grew up in Florida and the memory of the color is so vivid in his mind he can still see it. It is undoubtedly his favorite color. (He may end up going to UT just to wear Orange)
“What orange flowers?” I ask confused. We don’t have orange flowers in the front yard. I put all the orange flowers in the back yard so that he could see them out the window or when he goes out on the patio. We haven’t gotten new flowers for the front yet, though marigolds are coming in season again.
“The orange flowers! The small bushy flowers.”
“Oooooh! Those are pink carnations, love,” I explain to him.
Before we were married, my room was pink and black. I love pink and many of the things I use and have are pink. It is a tomboy’s way of making up for lost time. Now when I hold up a pink shirt for my husband to examine, he thinks it is orange. I could dress my husband in pink if I wanted, and he would think it was orange. That’s kinda funny, even to him.
He is always asking me for the blue towel (we don’t have blue towels) or the blue pillows (we don’t have blue pillows) and we laugh about it later.
If laughter is the best medicine, I think we will handle the transition to completely deaf/blind fairly well. It’s one of the reasons I started this blog-to focus on the positive things than come out of daily life with a deaf-blind man. Ushers Syndrome really isn’t something to laugh about, but what happens because of it often is. And if we can remember that, and the vivid experiences of life in color, I think we will do OK.