who’s going to want to do everything for you. They’re the ones that when you’re trying to explain to them and keep your independence, “Oh, I really can pick up the glass of water myself.” They don’t get it. And that can happen anywhere. Sometimes people think if you cannot see, you can’t walk, you can’t talk, you certainly can’t think. You’re definitely hard of hearing so they better shout in order for you to hear them. You do sign language because of course, you know, you can’t speak so you use sign language. And you have to go back and you have to go, you know, explain to them, “Yes, I can walk, I can talk, I can hear, you don’t need to shout. I don’t use sign language because I can’t see sign language in order to use it, but if you hand me a piece of paper with print on it I’m going to have trouble seeing it. And if I walk into a room full of people I’m going to have trouble telling who is who until you talk to me. But it’s okay. You don’t need to feel sorry for me. It’s okay. I can do everything I need to do.” And taking a very direct approach, a very practical approach. Talking about the daily skills, talking about what you can do, talking about how your vision still allows you to fix your own meals or pick out your own clothes or whatever it is that they’re worried about really will help them know that you are able to do things on a day-in, basis and that your vision loss hasn’t impacted your ability to take care of life. It hasn’t impacted your ability to keep going, to keep working.
It’s amazing how often when I tell people I was a single mother who raised five children they look at me like I’m crazy and, well I am because I raised five children, but they can’t believe that I’m visually impaired and raised children on my own. And that’s like, “Yeah, my kids would tell you that I probably can see perfectly because they didn’t get away with anything that their friends didn’t get away with, but I did it differently.” And that’s part of what when we’re trying to explain our vision, it’s the biggest thing for us to explain. Yes, I can do that, but I’m going to do it differently. Yes, I can write a check but I’m going to use a check-writing guide. Yes, I can get to the store, but I’m going to take the bus and I may need someone to help me at the store find what I need, but that’s okay. They get paid for being there and they could either sit there and play on their phone or they can help me. I prefer to see them help me than to get paid to play on their phone. So looking at it and taking a lighter approach with it a lot of times can help when you’re talking to other people, because if they see that you have a lighter approach to your vision that you’re okay with it, then they can be okay with it. That’s where the “bless your heart” comes in it’s because people don’t know that you’re okay with it and they want to make sure that life is okay for you. And in the south that’s what you say to people when you think that their life is really bad. You say, “Oh, bless your heart.” And anyone who is in the south knows this and knows that
to find a vision rehabilitation therapist where you are and get in touch with them and talk to them and get them to help you. That’s my best advice for that one. And as far as rod-cone dystrophy welcome to my world, that’s also what my diagnosis is. And you have a very good way of describing that. I really do like the idea that being smeared with Vaseline. That’s the best thing I’ve heard about that one in a long time. And if that’s the information that you choose to give people, that’s not bad and I’m not going to say don’t because a lot of people need that much information. It really depends on your – on the situation that you’re in. I always try to tailor my information on a personal level to the situation that I’m in. What do they need to know in order for the situation? If I’m in a grocery store and I need to find green beans, all they need to know is that I can’t find green beans on my own. If I’m in a clothing store trying to find something that I want to wear, well they need to know a little bit more because they need to know that I’m not going to be able to tell colors easily. It’s not just finding something that help me with the colors because I might pick up something that I think is one color and it’s not. It’s a different color. So yeah, help me with that because I’m not going to be able – I have very poor color discrimination. Sometimes it comes down to, yeah please tell me that doesn’t match because to me it looks just fine and it probably isn’t. So
because you didn’t see something. So explaining blind spots can be very difficult. Photophobia. Oh, my gosh that can be one of the worst things in the word, because there is nothing more difficult to explain to people than, “I need all kinds of light in order to see but light hurts my eyes, so I’m going to wear these dark glasses in order to protect my eyes from the dark glasses.” So when you’re trying to explain photophobia and why the light bothers you, but yet you need the light, it’s very contradictory. And it’s very hard to explain the technical part of it as to how your retina works and why it’s not going to do it properly and why it doesn’t process the light properly. It’s just easier sometimes to say, “I need light behind me, not in front of me.” The light in front of me hurts my eyes, the light behind me helps me see. And so that can make a really good way to be able to take care of that. Another one that people really don’t understand a lot of times is people who can see better at night. Now this is not me. I cannot see better at night. But some people actually can see better at night. And it’s because it really is a different part of your retina that sees in the dark, but trying to explain that why you can see better at night, why that part of your retina works better, you have to really know the technicalities. You have to be able to tell somebody, “Well, it’s because this part of my retina works better. I have much better vision with my rods and therefore it’s –
The list goes on and on and on of the things we need to do. So as you’re talking to the doctor or the professional ask very specific questions. Get the information that you want. Write it down and then think, “Okay, now that I know this part, now what do I need to know? Why do I have trouble with this? Why do I have trouble seeing color? Why do I have trouble only seeing dark colors?” Now a lot of people think trouble seeing colors it is a typical red-green color blind. So macular degeneration a lot of times it’s trouble seeing dark colors. And you want to know, “Why do I have trouble seeing dark colors? Why do I have trouble judging where the edge of the table is? Why do I have trouble trying to pick something up off the floor?” Asking those questions, asking them that specifically a lot of times can get you the information that you need in order to understand how your eyes are functioning and how your eyes will continue to function, because when you start asking, “Why do I have trouble with this?” Then if people start thinking, “Well, okay they really want to know what is going on with their eyes.” “Why does everything look like I have a spider web in front of my eyes?” And then they can explain to you why that is occurring and what it means. “Why do I see flashes of light?” I mean, all of these questions that go on they have reasons and unless you ask them you might get some information that can help
And my response is pretty immediate. I looked at him and I said, “Why does she need to tie your shoe?” And he said, “Because I’m blind.” My response was, “Could you tie your shoe before you lost your vision?” “Well, of course I could.” “Well then, you can tie your shoe now. Follow your leg down to your foot and tie your shoe.” His wife was pretty grateful, he was pretty mad but it didn’t take long and he began to realize I wasn’t being mean, I wanted him to realize life wasn’t over and that there were a lot of things he could do, because he had taken the idea that I’m blind and can’t do anything. I’m sorry. I always set a timer for myself so that I know where I am in time. So if there are any questions at this point. Ed Haines So we will entertain any questions. I also have questions I can read out, but let me give a chance to folks if they want to ask a question through the microphone first. Man I live in Pittsburgh, Pennsylvania and I’m willing to catch a bus. There are a number of busses that go by, different numbers and I really can’t hardly make them out. So people are constantly moving, leaving, taking on busses and moving around and nobody can really ask or maybe there’s nobody around. And the bus they’re supposed to announce the bus number that when they stop, but after time they don’t and I’ve complained a number of times to
their job. They’re supposed to make sure that you get on the right bus. As far as explaining to people about seeing at night, that’s one of those that it can be extremely difficult because you see just fine during the day accepting the shadow, because it’s not just at night, I’m sure Bill, I’m sure that any time that the light is not real good, any time you’re in shadows or you go from light to dark that can affect your vision. Sometimes just explaining to people that your eyes don’t process light well, that they just leave your eyes to some – If they don’t have a lot of light, they don’t like to work. And so when it’s dark out there, isn’t enough light for your eyes to work very well and that you might need a little bit of extra assistance usually, and you know better whether it’s verbal or if you need to be able to use sighted guide or whatever. Usually just explaining it to them that your eyes just don’t process the light very well can make a lot of difference for them knowing that it’s only going to be – if it’s dark out or whatever other circumstances your RP affects you as far as that night vision goes. The other question, Ed I’m going to have to ask you if you would mind repeating it to me so that I can answer it. Ed Haines