Palisade Pals

I need to say something about my fellow students at the Blind center. There were nineteen of us ranging in age from nineteen to eighty-seven. Everyone but myself was losing their sight due to some kind of illness, diseases such as diabetes and retina pigmentosa, to name a couple. I was the only accident. So, to help me fit in, they gave me my own special “illness” – tree blindness. I have actually told people that I suffer from tree blindness and heard them say, “I’ve never heard of that disease before.” When I explain, very few see the humor in it. I believe you had to be going to the blind school to understand.

One young lady, Sheila White, was the biggest cut-up I have ever met. She taught us how to laugh again. Often throughout the years, I have stated that my condition does not get any worse. It is Sheila I am thinking of when I say that. She was diagnosed with Type One Diabetes at nine months of age. By the time I met her, she had been living with the disease for twenty-six years and knew it was slowly destroying her body. The last time I saw her was at a Palisade Pals camp. She was totally blind, had lost a leg, and was on dialysis for her non-functioning kidneys. The volunteers made sure she rode the fire truck, hay wagon, and train, with her wheelchair and all. What I remember most about that day is hearing her laughter as she enjoyed the activities and the children who were there.

I’d like to tell a story that illustrates just how nonchalant we were. One of the college interns wrote a paper about her experiences with us at the Blind Center. I will never forget one of her observations. It went something like this: “Yesterday I was sitting at the lunch table listening to the conversation around me. I heard comments like, “I see,” “Let’s look,” “Did you see that?” “Come and look.” These are common phrases until you realize that you are sitting at a table with blind people. But soon you begin to understand that most of these people have been able to see most of their lives and you don’t change a language. The words mean the same whether you have vision or not. They just see through communication and the mind’s eye, rather than with actual vision.

As a group we had many discussions about communication, fitting in with the crowd and the obstacles presented by being blind. The general consensus was that people with a disability have an obligation to make it a non-issue for the people they associate with who are not disabled. We spent many nights talking about the different obstacles, problems and difficulties of blindness. But while these conversations were going on, students were enjoying reading books in Braille, playing checkers, watching TV and all the other so-called “normal” activities non-disabled people do. I began to realize my life had not been ruined, only changed and that I could do pretty much anything I wanted to do.

The Blind Center taught me things that help me function in a sighted world. For example, you learn to hang your fingertip over the edge of your coffee cup as you pour. When your finger gets burned, you know the cup is full. If you are pouring a drink for a sighted friend, make sure you wash your hands first, because you have no idea what your own hands look like.

I want to elaborate on some of the people I attended the Blind Center orientation with. The teachers and counselors were an inspiration to all of us with their degrees and accomplishments. But living with nineteen other students, I got very close to most of them. We shared the same fears, desires, obstacles and goals.

The first morning I attended OTP (Orientation Training Program) I met a young man named Wade. He had lost his sight as a newborn to retina cancer. He had never had sight, and yet was so in tune with his surroundings that he traveled around the school without a cane. That first morning he was walking to class with Cindy and me, talking as we walked. He turned and went through the door just as if he could see it. Cindy whispered, “I think he can see something. He didn’t even hold out his hand to feel for the door.” As time went on, I learned that he had many other talents.

I had never heard of shadow sounds before. The best way to describe them is that they are the disturbance you detect (hear) from objects you are in close proximity to. I learned to walk down a hallway and know where the doors were. I could stay very close to the middle of the hall just by listening. This is not an exercise you use except to practice mobility. As you are traveling out on the street, you can detect parked cars (most of the time) large trees and houses. Traveling under your own mobility is very exciting, interesting and at times down right scary!

Wade once went to the Social Security office on our lunch break. It was thirty-two blocks straight west. When he walked out of the building, he got turned around. We were waiting for him after lunch, but he didn’t show up. He missed the first hour and the second hour. He came in at the end of the third hour.

I said, “Hey, Wade, where’ve you been?”
“I got lost.”
“Where’d you get lost?”
“How do I know where I got lost? I have no clue.”

If you get lost, you have sight to go looking for landmarks. You have ability to put puzzle back together and find your way out. When you’re blind and lost, you’re really lost.

The mind plays games on blind people.
When you’re blind and start thinking about things like the accident that caused it, or other catastrophic events, like the fear of being in a car accident, you can actually envision it. It all plays out in your mind. You feel the car closing in on you, and it becomes very frightening. You don’t have the visual cues to reassure yourself that this is just the mind playing tell-a-spooky-story game.

It’s hard to have dreams because when you wake up, you’re not aware that it’s a dream. If you have a nightmare and wake up, you’re not even sure you’re awake, because you can’t see your actual surroundings, to re-orient yourself and say, “Oh, it was just a dream.”

I dream more now than I used to, I’m aware of more dreams than ever before. I see in those dreams. It was kind of funny when I went to a conference for the purpose of helping a committee come up with some ideas of what they had to do to make the county courthouses and other buildings accommodate the disabled. There was a guy there who was a double amputee, with no legs below his knees. He said, “I had a dream about walking up the ramp into this building.”

I started to laugh. No one else understood why I was laughing. The guy turned to me, and I said, “In my dreams, I can see.” We both started laughing so hard, we were just rolling, and no one else could get it.
It’s such a different sensation; it’s difficult to explain to somebody.

One problem I had before I got a talking clock was how to tell time. I’d get up in the middle of the night, thinking it was time to get dressed and start the day, not knowing what time it really was. How could I know? I finally figured out that crickets don’t chirp before 5 a.m.

Another frightening thing is going out and not knowing where you are. I have gotten lost before, but you have never really been lost until it happens when you are blind. When you can see your surroundings, you might be confused until you find a familiar landmark. You can reason through your situation and retrace the path you followed to get where you are. When you are blind, reason is the only familiar tool you have. You have to stay cool and calm and do the best you can to back track. Believe me, cane mobility in a gymnasium is quite different than out on the street on crooked and broken sidewalks.

If all else fails, you can ask someone who might be watching you and wondering what you are doing, that is, if you can get them to talk to you.

When traveling and in a hotel room, I wake up and have to go to the bathroom. “Wait a minute, where am I? What’s happening?” You have to reorient according to different criteria than if you have vision.

Even riding in a car can be frightening, not going any faster than the speed limit of 65 or 75. I don’t have any reference points, and getting thrown back and forth when going around a corner just bugs me. This young kid that drives for me now is driving me crazy. It really bugs you to not be able to see which way you’re turning. You have the sensation of the movement, but you can’t prepare for it like when you can see the curve and adjust your body to compensate for the motion. When you’re blind, you have a sensation of the posts flying by faster, or whether they’re going slow. I notice the movement of the car, and I admit, that sometimes I’m probably interpreting the car as going faster than it is. But how do I know for sure?

I’ve wondered a few times whether it’s a reaction to the blindness or a product of the longevity of being blind, but now I’m claustrophobic. Do you remember when that Boy Scout got lost in the Nutty Putty Caves? I had nightmares over that.

We had the scouts at camps last weekend to pass them off on their handicapped awareness merit badge. Richard Bowman, a guy who went to a major school in Wisconsin for the blind, and a guy I call “Doc,” was there from the Blind Center to talk about mobility and teaching the blind. He and I went through a lot of things with the scouts. He showed them how to approach people who are blind, and demonstrated the sighted guide routine. For twenty-five minutes, he’s telling these kids all about how to do these things, and ten minutes later, they forgot all or most of what he said because you can’t learn all of it in that amount of time. You can’t picture what being blind is like. Some people think that they’ll get an idea of what it’s like to be blind by walking around with their eyes closed. But any sighted person can open their eyes whenever they want and be done with the experience. When you’re blind, you can’t open your eyes.

I can’t explain. It’s a different world. Most of the time it’s fun and a little exciting. Sometimes it’s scary.