People mean well. They wish you the best and are just not educated about dry, age-related macular degeneration. They also are not used to a condition with no cure and no treatment. Therefore, God bless them, they say some really stupid things.
So far my favorite is “it’s getting better; isn’t it?” Get that one every couple of weeks.
What part of progressive, incurable condition don’t they get? I want to scream “No!” but I try to be patient and explain to them that dry AMD has no treatment and no cure and that – for some reason I think has to do with a rather poor genetic make-up in the eye department – my vision is on a fast track to hell.
Then I feel bad because they look so sad. Like their ice cream just fell off the cone. I somehow feel like I have disappointed them.
Since I don’t like to disappoint people I try to cheer them up (is there something wrong with that picture?) and tell them I am signed up for two studies and have been waiting for a year and a half. I am sure I will get some sort of help through one of the studies.
Then the advice starts. I should tell those researchers I want something done now! I should be more forceful with them. And why am I waiting around for a fancy, new treatment anyway? Their great aunt Tillie got those shots and they helped a lot. You need to go and get them!
Sometimes it makes me wonder how I got to 63 without making some stupid mistake and being accidentally killed. After all, I apparently am not very bright if the answer is that simple! Good grief.
Then there is the ever popular “you don’t look blind. You’re doing OK.”
This statement begs the question “what does a blind person look like?” I would love to ask but I don’t want to be rude. Truth of the matter being, many people have never actually interacted with a visually impaired person and, if they had, they may not have ever realized it. Since I have walked down the hall and managed not to run into anyone, I must not have an impairment. After all, in the movies don’t all of the blind people stumble around with their hands out in front of them? I, I assure you, don’t do that.
Last one: “it would be great to retire and just relax all day!”
There are so many answers to that one, I don’t know where to start! First of all, motor in my butt here. I don’t sit well for five minutes. Then, we are not talking a day or two, we are talking maybe 30 years. What am I going to do with myself for 30 years? Even relaxation gets old.
So there you have it. People say really dumb things. I try to remember it is generally out of concern and ignorance, sometimes a LOT of both. Therefore I try to be patient and turn the interaction into a teachable moment. I get up on my soapbox and tell them about AMD. Try to do the same; will you? After all, we don’t want to spend the rest of our lives listening to idiot comments; do we?