I am a student. I mentioned earlier that I gave up driving –I had to be reasonable about that.
So, I took a bus to school. It was such a humble experience. It was like you felt like you were “poor” or maybe lost your driver’s license because of DUI, delinquent payments, or too many accidents…or something like that. There is so much pride involved.
I sat in the bus in near tears. It was just awful. It’s a new phase in my life I will have to get used to. I still don’t like it.
They say you go through a grieving process when you find out about anything serious, such as cancer or death. So, when I found out I had Usher Syndrome
, I went through denial for years. It was like, I can see. I am not going blind. I can live with my hearing problem. I can accept it. I have dealt with it all my life. But this - this disorder is another ballgame. I didn't grow up with it.
I have an older brother and sister who also have this disorder. (I really don’t like to call it a disease.) I got my eyes checked when I was 21 or 22 and the doctor didn’t see anything wrong at the time. I don’t know if it was because it was too early in the stages or what. But I held on to that hope. As I got into my mid-twenties, I started having night vision problems. I couldn’t find the car door handle at night. I knew it was there, but it took some time to find it. I told myself it was some kind of “sympathy” thing because my older siblings had it. It was all in my head.
When I was almost 29, I finally went back to see the eye doctor again. A different one. It was confirmed that I did have Usher. I went home bawling my eyes out. I didn’t want to believe it.
Life settled a bit. I had a toddler to take care of. I pretty much pushed Usher in the back of my mind. Maybe if I ignored it, it would go away.
I get frustrated when I drop a pen on the floor. I couldn’t find it. I would go on all fours and press my cheek on the floor to find it. That always seemed to work. Just look for anything that stood out like a pimple on the floor.
Sometimes I have one of my kids point out the “missing” object for me. I joke about the silly gopher (remember Chaddyshack?) sneaking into the house, stealing and moving things around. I would say something like, “The gopher came in and took the cover for the butter.” All I had to do was scan a little more to the right and I would find it. Anyone with retinitis pigmentosa (RP) can attest to this.
I still have central vision. The vision is gone in the peripheral region. I can see movement and sometimes identify something out of the corner of my eye. It’s like a doughnut in front of your eyes. You can see on the outer edges of the doughnut and in the middle of the doughnut, but you can’t see through the doughnut. Of course, I have been told by some that the vision I have peripherally is called “islands” of sight or “holes” in the vision. I want to point out that the area of vision that is lost is not "black." It's just...not there. The best way to descirbe it is as a very thick piece of plastic that you cannot see through.
So, you go through more anger and you know it’s no use to bargain. I seem to be stuck between anger and depression part of the grieving process. I keep going back and forth. I don’t know if I accepted it. It’s more I resigned to it, but I still have bouts of frustration and despair.
Back to the bus scene: I am feeling humble and fighting tears. I don’t like the feeling that my independence is gone. Maybe some may argue and say that I am being independent just by riding the bus or taxi, but it sure feels like “dependence.” I hope that this gets easier as time goes on or the more I use other modes of transportation.
I have enough sight so that I can move around on my own. I have problems with localization of sounds. I am not sure where the sound is coming from. I have one ear that has more hearing loss than the other. It does not help me with sounds. I can hear a car but I don’t know which direction it is coming from. Sometimes I can’t see it right away until it zooms pass me.
I can hear speech, though I may have to ask for repeats. Some people are really good about it and some get irritated.
I have yet to try the white cane. I don’t know how I feel about that. It would really symbolize the fact that I have vision problems. It's hard for me to be open about it and tell people this. Sometimes I can hide the disablity, though it is not as easy as it used to be. Can you imagine using the cane and having people think that you are “faking” it because you can “see?” People need to be educated that some people using the cane are not 100% blind. Some have low vision with some sight. They say that you are your best advocate. It’s up to you to educate others.
Of course, I know that no one can really understand what we go through. Not really. They can try to imagine it, but unless you have RP/Usher, you really can't. Empathy is the only thing left, I guess. It's hard to put yourself in someone else's shoes. How can anyone walk in another's shoes if they aren't really "living" it? It's not a matter of putting ear plugs in and wearing blindfolds or special vision goggles that stimulate the vision loss when you know you can always unplug your ears and take the blindfold or goggles off. It's not permanent.