Art.

Most things I want to do, I can do. I can find a new and different way to do them. I can braille games to play with the kids. I can sticky label my baking supplies and bake awesome muffins. I can buy an iPhone and text. I can read just about anything with my bookshare app. One thing I have always been unable to do, and honestly jealous of people who can is draw. I’ve always wished I could draw and look at art. I had to take an art class for school. I was annoyed when I found out I’d have to take the class. I thought making a blind girl take an art class was just mean. Then I got the book. The book had raised drawings of some of the famous art work of Egypt. I loved it. It was beyond interesting to be able to see these things in a way that I never had before. I read this article today and I just had to smile. Not only is this amazing technology, but it is actually a reasonable price. I could draw pictures and see them, and show them to other people, and they’d be seeing the same picture I was seeing. I think this is completely amazing, and look forward to actually trying it out someday soon.

http://afb.org/afbpress/pub.asp?DocID=aw151105
Sent from the AW App!

Look, listen, seen, see, watched,hear, heard.

I grew up in a completely sighted family. I didn’t have any real interaction with blind people until I was 17 so I use the same vocabulary as everyone else. It doesn’t even come up often un my day to day life. When I meet new people, or when I’m traveling alone it does come up. When I travel I walk with my hand on someones arm and my cane in my right hand. I use a cane with a small ball on the end that I move from side to side in front of me while I walk. This enables me to detect steps, obstacles in front of me, the size of a door I need to walk through. Things like that. When I’m walking with someone I don’t know and they’re describing the surroundings, an obstacle, a step, I will say, “I see it,” When I find it with my cane. It doesn’t even cross my mind. But the people always stop and look at me for a moment. Then I explain that I meant I found it with my cane. Words like see, look, looked, seen, watch, and watched are used so regularly that it doesn’t occur to me that it would seem strange for a blind person to use those words. I will say I’ve seen a movie. I will ask to see something while holding out my hand to touch it. I will say I saw someone. I will say I looked at something. I say I’m watching the kids all the time. I don’t replace words like see and watched with words like listen, hear, and heard because I never have. It seems like more work to change words out. I use the same words as everyone else.

Cancer. Babies.

It’s hard for me to think of myself as a cancer surviver because I don’t remember any of it. I had bilateral retinoblastoma when I was 1 year old. By the time I was 13 months old I had no eyes. I don’t have a cancer story to tell because I don’t remember any of it. I often think of my family as the survivors of that part. My brothers and sisters, my parents. People who had to deal with a sick baby, then a blind baby. I don’t remember being her. I don’t remember being sick. My cancer story is being healthy and always, always, from the time I was 8 years old, knowing that I am blessed to be. I have cancer checks twice a year. When I was little my family lived a 3 and a half hour drive from the hospital so cancer checks were long, stressful, scary days. There are 2 visits that have stuck with me my entire life and shaped the way I view myself and my world.
Elsa. I was 8 when I met Elsa. Elsa was 6. I remember feeling like I was so much older than she was. Elsa had the same kind of cancer I had but she wasn’t healthy. I remember playing dolls with her in a waiting room while actually listening to her parents talk to my parents. Her dad was crying. I remember thinking that dads weren’t supposed to cry. I had never seen my dad cry. She wasn’t paying attention to our parents. She was playing with my dolls. I listened to her dad cry and her mom tell my mom her story. Elsa had been diagnosed with cancer when she was 3. She had cancer in both of her eyes, just like I had, but one wasn’t as bad as the other. Her parents decided to do treatments on that eye to try and save some vision. She got better. The cancer went away. She had one working eye. Then when she was 6 the cancer came back. she had ended up losing the eye but the cancer had spread. This is what I picked up listening to the parents talk while we played dolls. I remember giving her my doll when I left because I was sad that she was sick. I was sent home healthy that day. I remember the day her mom called my mom to tell her that Elsa had died. I remember being completely heart broken and knowing at 8 years old that that could have very easily been me. That’s when understanding of being blessed to be healthy started to grow in my mind. Now when I meet the people who tell me how sorry they are that I’m blind, how sad that is, Elsa is who I think of. I think of her and her family and the overwhelming blessing that I’m not sick. That I don’t remember ever being sick.
Mom and baby.
I don’t remember either of their names but the mom with her little boy were the motivation for the hardest and most right decision I’ve made in my life up to this point. Bilateral retinoblastoma is a genetic cancer. I have a defective copy of a Gene. This is why people with my kind of cancer usually don’t stay healthy. Because even after your eyes are gone, you’re still you with your same defective genes. The statistics make me sad. There is a 70% chance that I will have 1 or more of 7 different kinds of cancer before I’m 30. I’ve known this from the time that I was 14. When I was 17 I started seriously thinking about the genetic factor. The effect these genes would have on my babies. I had the story of the mom and her baby boy in the back of my mind while I did research. I had their story in the back of my mind when I talked to my doctor about the research I’d done and learned that it was even worse than I’d put together. Because my babies would have my defective gene. So my babies would have half a chance of being healthy babies and half a chance of being cancer babies. But it was worse than that. My doctor told me that in the research that he’d seen, even the kids who didn’t get retinoblastoma weren’t always healthy. They had other kinds of cancer. And I remembered the mom and the baby. They were at my cancer check because the baby had the same doctor I had. He was little. A crawling baby. And again I listened to his mom tell my mom their story. The mom was young. She was 23. She told my mom that she had cancer. Her husband had left her when he found out she was sick. Then a few months later the baby was diagnosed with cancer. So there this girl was, sick and trying to take care of a sick baby all alone. I don’t remember thinking anything then beyond hoping that they both got better. But they stuck in my mind. When I was 18, after all of the research and talking to my doctor I decided to have a hysterectomy. I decided that having a baby with the very real chance that that baby would be sick would be the wrong thing to do. My family asked me if I would choose not to be born if I knew that I’d be blind. If I’d trade my life in if I could. I wouldn’t. But I also wouldn’t make that choice, take that risk for another person. Now, when I see my friends pregnant, with their new babies and I feel that ache for what I can’t have I remember the mom with her little baby boy. I remember listening to her tell my mom how she was afraid she’d be to sick to take care of him while he needed her, because he was sick too. I see the cancer babies at my check ups now, and I know I did the right thing.

Crossing streets.

There are different levels of blindness. People who are considered legally blind can sometimes still drive with glasses. People may be able to see shadows. They may be able to see traffic lights. They may be able to see colors. They may be able to read with large enough print. This is not the same as a person like me who literally has no eyes. The world is a vastly different place. Some time when you’re not rushing close your eyes and just listen. Listen to your world and see how much of it you can figure out. Then open your eyes and see if you were right. I can’t open my eyes and see if I’m guessing right. I have to listen closely all the time and build my world with that information. I operate in 2 modes. When I’m at home, at work,, places I know well i’m comfortable. I can figure everything out without even thinking about it. When people who don’t know me well see me at home or somewhere I know well they are surprised by how easily I navigate my surroundings. The kids will sometimes just watch me and be impressed by how I handle little things like cooking and laundry without being able to see it. I don’t think about blindness very much when I’m in my own environment. When I’m in public though the rules are very different. The world wasn’t built for people with no eyes. So much of it is visual. One of the things in my life that gives me the most anxiety is going somewhere alone. Most of my experience here has been built airport traveling. When all of your best friends and half of your family live in different states you have to go places. The first time I went anywhere alone I was 17. I flue to Columbus to train with a guide dog for a month. It was the best and scariest learning experience of my life. I went from my very sheltered little life, all alone into this huge city I’d never been to. I met some amazing people and did things I’d never done before. Before you’re sent home with your guide dog you have to complete a test walk. You have to leave the school building, go to the bus stop, get on a bus, go down town, go into a building, make a purchase and get back to the school building by yourself. If you can see all of this only takes intent and a basic plan. Have you ever thought about the line at Starbucks? Not how long and annoyingly slowly the line is moving, but where the line actually is? When you can’t see you have to listen to find it. You listen to the sound of cash registers. You stand very quietly by the door and listen. You find the sound of the cash register, then you try to judge how many people are standing in line waiting. Then you have to find the back of the line and wait. Then, as people move up, you have to adjust your place in line. You don’t have a reference point at all. You try to listen well enough to not bump into the person in front of you, but still be moving forward so the person behind you isn’t waiting longer. Have you thought much about crossing streets since you were 6 and your parents taught you to look both ways? Let me explain a little bit about crossing streets. when you’re blind and you have to cross a street there is a whole listening process you have to go through. First you have to find the curb. This may not sound like a hard task, but it can be. There are many different kinds of curbs. Some are raised, some are only a different texture from the street. Some are straight and some are at an angle. The curb is very important. The curb tells you where you are in relation to the traffic. If you are at an angled curb, but you think it’s a straight curb. you may end up facing a street instead of a crosswalk. A mistake as simple as that could get you hit by a car. So once you are very sure you have found the curb then you have to listen. You have to listen long and hard. Traffic has distinctive sounds. If the traffic directly in front of you is moving, you can’t cross. This seems really obvious as I’m writing it, but it isn’t that clear when you’re listening. There are a million other sounds happening all at once. There are people beside you talking and laughing. They’re using their eyes to see the cars so they don’t have to listen to anything. There are women in high heels walking away. There are sometimes assholes calling your dog. There is music from a store. You have to tune all of that out. Then there are other streets. The cars on these other streets sound louder and closer than they actually are. There are the beeping traffic lights that are very helpful if they’re on the street you’re on. But often the beeping traffic lights are not on the street you’re on. They are on a completely different street. At that point they add another distraction. Then maybe it’s raining. If you’re really fucked it’s snowing. Add that sound to all of the others. Sometimes when I have to do something stressful or scary I compare it to this. I pull up the memory of standing alone at a traffic light. Cars are huge and loud and a hundred times more powerful than you are. There is nothing as scary as taking that first step into a street. Hoping you’ve judge all the sounds correctly. Hoping drivers follow the stop lights. Hoping you can find the curb on the other side.