People Don’t Get It

I get a consistent response when I tell people that I’m blind. It’s usually very close to, “Really, I never would have guessed.”. And it’s almost like they don’t really believe me .. which makes sense, since as far as they can tell, I’ve been walking around like all the sighted people. So I try to explain a little bit to them of what I see. But I never want to take very long to explain it. I mean, it usually comes up when we are in the middle of something else. Like, recently I was helping with some manual labor out at our church’s property. The people on my crew have been working around me for a while and I’ve been acting like every one else there. But then I do something like drive the wheel barrow right into a hole that we dug for a plant or straight into a big rock. Anyone else on the crew would have seen it and so it’s a little weird. So I decide to explain it by telling them that I can’t see very well. But that requires a bit of explanation, and yet you can see that I wouldn’t want to take too long with it … I mean, we’ve got a wheel barrow of dirt to dump!

And in those instances where it’s logical to tell someone that I can’t see very well, the conversation takes a predictable course. When I say, “I’m visually impaired.”, then they will often say, “Oh yeah; I’ve got really bad eyes too.”. But they are talking about needing glasses, and I’m talking about being blind. So I have to say, “Well, my vision problem is a genetic thing that has caused me to be blind.”. But then they REALLY look at me like I’m weird because they’ve been watching me walk all over without a white cane and pick up small items … I don’t look like I’m blind much of the time.

It’s accurate to say that I’m blind. But when we think of someone blind, we think of a person who can’t see ANYTHING. And so I think it confuses people when they hear that word attached to me. But when I say anything else, they don’t really get it. So I’m thinking of relying less on a label and more on examples of what I can and cannot see. Maybe I’ll still say that I’m ‘visually impaired’, but I’ll follow it up with an example that clarifies it. Like …

‘I’m visually impaired. I can’t see well enough to drive, and I have a hard time seeing detail.’

Maybe I could add … ‘I can read, but It’s really slow going.’

Yeah! That’s simple, but helps people know what they need to know. From there, we could talk more if they want or if we have time. But at least it gives them an idea of how I function practically.

I’m not sure why it’s taken me so long to clarify this in my mind. What do you all think? What would help you if you were just meeting me or just finding out about my visual disability? … Keeping in mind that I don’t want to launch into a long discourse every time I need to explain it.

… If you don’t know what I’m talking about, then read my other blog entries. ☺

Dan’s ‘Eye’ Story

So, how DO you see? So, what can you see? These are questions that I am regularly asked. And I do not mind being asked. But sometimes I feel bad because they are asked by a person who I have known for a long time. I forget who I have explained it to and who I haven’t. Or sometimes I assume that someone else has told them. Or sometimes I just feel like they probably wouldn’t really want to know. I struggle to explain it, but I’m going to give it a crack. Read on if you want to.

First, a bit of my ‘eye story’.

I lost my sight my Senior year of high school. Until that point I could see 20/20. I was out running and as I glanced over my shoulder to cross the street, the car looked a bit blurry. I got my eyes checked out and the doctor said my eyes looked like they should be seeing 20/20, but I was reading 20/70. The next week it seemed a bit worse. I went in and he said my eyes looked like they should be 20/20 still, but I was reading at 20/400. From there I lost the rest of my sight over 3 or 4 weeks. At that point I saw quite a bit worse than I do right now. I lost all of the central vision and most of my peripheral vision. I could only read something if the letter was about 10 inches tall with lines about ¼” thick. Even then I would hold it up really close and look way above it to try to read it with my peripheral vision. That was about the middle of my senior year. I finished out the year having my books and tests read to me out loud. But you know how the last part of a senior year can be … not too hard. Thankfully, I’d already taken me SATs and was accepted to Willamette University.

I met with a lady that helped me learn how to live blind. She wanted me to use a white cane, even if it was just for cars and people around me to know that I was blind. I never used it though … well, accept as a pool cue in college. I would just listen closely before crossing a street, and if I didn’t hear anything, I would go for it. I went ahead a ran track that year. I trained by running next to other runners, and had a few crazy encounters. Like running right through some of that construction tape and landing in wet cement on a sidewalk. My partner forgot that I wouldn’t see it and he just stepped off the sidewalk when he came to it. My track times were down a bit that year. I think it was because I was running into a fog and couldn’t see my competitors ahead of me. But I still lettered … barely. Over the summer I learned basic Braille so that I could label my CDs and books. A couple of philanthropic organizations in town helped me buy a laptop that would talk to me. That was REALLY cutting edge at the time. Now my Mac comes with it build in!

So off I went to college and did OK. I got my books on tape and people would read my tests to me. I took notes on my laptop with an earphone in. I could see well enough to tell if there was a table or couch or stairs coming up … most of the time. I had this little monocular thing that I would use to read the number above a door way or a street sign. I’d walk right up under the sign and point this thing at it like I was trying to see something on the other side of the ocean, but it was just a few feet away.

And then I was sitting in Psych class one day near the end of my freshman year, and I looked down and through the fog I saw the percent sign (%) on my laptop! The girl who is my wife today was sitting right next to me. I reached down into my folder and pulled out some papers that I had shoved there when they were passed out, but I’d never read. And I was able to make a out a few letters if they were pretty big and bold. I went to my mail box and on the way home I stopped and was able to read a little memo thing in large font! I was amazed. My roommates made a make-shift eye chart. You know … with the big ‘E’ at the top and getting smaller and smaller as it went down. They taped it on our dorm room door and I’d sit on the back of our couch. Almost each day I was able to read another line down! It was an INCREDIBLE experience! Just as my sight had left, it came back over about a month’s time. I knew it wasn’t all better, but it felt A LOT better than it had been.

So one weekend when I was home, I asked to drive my parent’s car. My mom went with me, and it was a good thing she did. Not very far out on the drive I started realizing what was going on. As I would look down the road to see what was coming, I could no longer see the white line or the side walk to check for pedestrians, etc. I had been so excited about seeing some clarity that I hadn’t realized that it was only in a small area. I ended up getting glasses to help with that little area on my vision where I could see, and that made it get even better.

And that’s how my sight is today. It stabilized after about 2 months and has pretty much stayed the same. You’re probably asking, “So what caused it?”. Well, when it first happened the local doctors had no idea. One even tried to tell me I was crazy and making it up. But a specialist in Portland, OR thought it was Leber’s Syndrome. They tested me for it, but my DNA did not show it. About the time I got some of my vision back, John’s Hopkins University had discovered some more mutations of Leber’s Syndrome, and they re-tested my blood samples. My family was unaware of any blindness in our heritage, but sure enough, I do have Leber’s Syndrome, as Dr. Shultz had thought. It only manifests in males, usually around 17 or 18 years old, and the version that I have is really rare. But evidently some people do get some central vision back after a while.

So, how do I see things NOW? Well, I have a little spot in the center of my field of vision that I can see pretty clearly in. With glasses I can see 20/30 with good light and contrast. That clear area is about the size of 1 to 1½ letters of newspaper type if you are holding the newspaper up in front of you about 1 foot away from your face. So it’s a pretty small area that is clear. I’m amazed at what a difference it made when I got it back. That area right in the middle of your field of vision is what you use to see clarity with anyway. The rest of my vision is actually pretty much the same as it was for that year and a half period. I think there might be a few other patches that I use, but I can’t really count on them. So its really blurry in the rest of my vision and then the peripheral vision is a little better, but still significantly decreased. It’s like looking at life through a straw and then everything else being really blurry, or like the pixels on a TV are all jumbled up. So, the colors are still there, but I can’t make much sense out of them. If there is a red wall, it will look like a big red blur. There might be some pictures on the wall, but I may not notice them. However, when I focus my clear spot on the pictures I will probably be able to see them. But it would probably take me a while to make sense of the picture because I’ll have to look at the whole picture in little segments. So when I meet someone, it takes a while for me to figure out what they really look like. It’s like my mind pieces the image together of what the person looks like from all the tiny snap shots I’ve seen of them. But it’s hard for me to know how long this will take. If I talk to someone and they are standing in front of a bright window, I may not be able to see them very much at all that whole conversation because they are back lit, and the contrast on their face is really bad. But other times I get a sense of what a person looks like pretty quickly. And it’s hard for even me to tell how it will go. If you and I were sitting across a table from each other, and I looked at one of your eyes, I would be able to see half of that eye clear enough to see the difference between the dark part and the white part of your eye. But as I’m gazing into your eye, I would not be able to see your nose. It’s a pretty small area. But as I am still gazing into your eye (are you uncomfortable yet? ) I am able to tell with my ‘fuzzy’ vision if your skin is black or white or brown or whatever.

After I got that center portion of my sight back, I transferred to Azusa Pacific University in the L.A. area, and had to deal with some bigger city challenges. I also did quite a bit of traveling with music groups and had to face traveling in Europe, Korea, and around the U.S.. Also, the music groups that I was singing with, learned a lot more music, much faster than where I was previously. And not being able to read the music quickly was a challenge. Still, I managed to sing as the lead bass in the premiere choir and to get accepted into many touring groups.

I am not able to drive, and that presents lots of challenges for our family … especially trying to get 3 kids to school and events. I have an amazing wife who is very understanding and patient to do all the driving. However, I do ride my bike. Riding on city streets is my version of mountain biking. It’s not as strenuous, but it can be just as exciting. With the light changing from shadows of trees and buildings, it can be really hard for me to see what’s coming up and sometimes I get surprised. Once, I ran straight into one of those big folding construction signs. It was the kind that is about 5 feet tall and 5 feet wide and stands up like an ‘A’ frame with a hinge at the top. It was all white with big black letters that said ‘CAUTION’. I slammed into it and it folded right up and slapped to the ground. I managed to jump off my bike in the air and land on my feet, but I doubt it was very graceful … probably a 3 out of 10 rating. But at least I was able to stand the sign back up (minus one leg) and ride away. I had no idea the sign was there until I hit it.

And that’s how it goes with my vision. Sometimes I see exactly what I’m looking for, but sometimes I just can’t find it. I’ll walk around the house for a long time trying to find something, and then I’ll finally find it right where I had already looked 3 times. It’s because I can look ¼” away from something and not see it. But other times I can just glance over and see what I’m looking for in an instant. It’s just hit and miss, and it really plays games with my head. I like to be a pretty fast paced person. And sometimes I can pull that off just fine … run into a room, grab what I’m after, and zip off. The next time, it might take me 6 times as long. It’s pretty frustrating! And I’m sure it frustrates my wife too, but she’s darn cool about it.

Lots of people ask me if my other senses have been heightened by being blind. I can’t really tell for sure, but I don’t really think so. I think it’s because I do have enough vision to rely on for many things. I’m SOOOO glad I can see as well as I do. But it’s also difficult because I still try to do many things as a sighted person would, and yet I don’t see nearly as well as they do. So I get to the end of the day pretty worn out from eye strain sometimes. I push myself to keep up with sighted people at sighted tasks and expend a lot more energy than they would. But I do pay attention to some things more than a sighted person probably does; like the sound of people’s voices. However, sometimes I feel like my other senses are WORSE! Like when I’m in a dark, noisy restaurant with a group of people, I often end up asking my wife what was just said. And I think, “I’m blind, not DEAF! Why am I the only one who didn’t catch what they just said?”. Well, I think it’s because everyone else at the table is using both what they heard AND what they SAW their lips do in order to figure out what was said.

In my daily life I use computers a lot because I can get the screen nice and bright with great contrast. I love my Apple products because they have great accessibility features built in. My Mac and iPhone are often talking to me. But I also use a really big monitor and make things large so I can see them easier. If I need music on stage, I use an iPad Pro mounted on my mic stand with everything really big and bold. It allows me to see the music even in low light situations and from farther away. When I need to read documents or books and can’t get them in audio format, I scan them into my computer and then use OCR (Optical Character Recognition) software to turn them into text, and then read them with my computer’s Text-to-Speech engine. This whole ‘blind’ thing has helped me become pretty techno-savvy.

That gives you a pretty good glimpse into my visual world. I’ve wished that I could have a special pair of glasses that I could hand to someone and all of a sudden they could see things as I see them. It would clarify so many things … or wait .. I guess it would BLUR so many things .. ha, ha. … Sorry. But it would be handy to just be able to SHOW people what I see. I’ve also thought it would be cool if I could explain it really well to an artist and have them paint a series of works representing my visual world. That might sound kind of egotistical. But actually, I think it would be interesting from an artistic perspective. It would be kind of impressionistic, but still ‘real world’. I guess it’s also kind of like those photos or movie shots that you see where they focus on just one point and have everything else out of focus. Except the focal point is really small. Yeah … that’s actually a pretty good description I think.

Sorry if that got tedious, but maybe some people found it interesting. Thanks for reading.

Don’t you wish people could see things through your eyes?

Don’t you wish that people could see things the way you see them? Wouldn’t it make things easier? There would be so many less awkward conversations explaining things or arguing points. They might still disagree with you, but at least they would understand why you think what you do.

I wish people could see things the way I do. Sometimes I wish this in a figurative sense, but most of the time I wish this in the most literal sense. My eyes see the world differently than pretty much every other person on the planet. And that leads to some really awkward interactions. I’m sure you can relate a little bit in your own life when some one thinks differently than you. We say, “They just see things differently than I do.”. But in my life, they really do SEE things differently than I do.

I’m blind. But I don’t look like it. I walk around with out bumping into things … most of the time. People look at me or meet me in a casual setting and think, ‘he’s normal’. But then I do something stupid. I trip over a stair, or can’t find something that’s sitting right in front of us. Or worse, they think I’m a stuck up jerk because I don’t’ smile, or wave, or say ‘hi’ to them as we pass. They figure, “I’ve seen him lots of times, he should at least be friendly.”. Or, “We met just last week. Why didn’t he say ‘hi’?”. Because I can’t SEE you! But they don’t know that. I mean, we just met. It’s kind of weird to just bust out with, “Oh, by the way, I’m blind”.

But now I’m starting to wonder. After years of living with this condition (I lost my sight my senior year of high school … I’ll write again to fill you in .. or read my bio) I’m starting to wonder if I SHOULD just tell people the instant I meet them, “Hi, I’m Dan. I’m blind.”. At least that way I don’t risk hurting their feelings the next time we pass and I don’t’ recognize them. And I would save myself the mental, emotional, and visual stress of TRYING to recognize people. I could just be who I am. This guy who sometime sees things, but many times doesn’t.

All of this is exacerbated right now because I’m attending a new church. And it happens to be a pretty large church (by Corvallis, OR standards). And so there are MANY new people to meet and get to know. And I like meeting new people. But on top of not being able to see well, I’m not very good remembering names. But I work at it. I think it has to do with the name being attached to a fuzzy image of a face in my mind. But I wasn’t really that good at names even before I lost my vision. … Any way. I’m up on stage quite a bit and so people think I can see them all. NOT! Those lights in your face only make things worse. And then I’ve lived in town for a long time and have lead worship a lot, so many people are familiar with me. But that doesn’t mean I am familiar with them. I WISH I was. But I’m not. I wish I could just get up in front of the church an announce to everyone how things work with me.

But even if I were to just introduce myself as ‘Blind Dan’ or get up in front of my church to tell every one, “I can’t see you, so don’t be offended when I don’t say ‘hi’”, that really wouldn’t resolve things. It’s very hard to explain the way things appear to me and what I can and cannot see. (I’ll give that a try in another post)

And that brings me to my point. Don’t you wish that you could explain to people the way that you interact with the world? Many of us try to do this by attaching little labels to ourselves. Things like political parties, or church affiliations, or statements about how we grew up. And even though these statements may be true, they only give people a clue about how we ‘see things’. And they are left to fill in the blanks for themselves. And they PROBABLY fill them in wrong. They GUESS what we probably think about topics, and when they interact with us, they have these notions in their head.

Maybe you’ve had the experience of debating a topic with someone where they just can’t understand your point of view. It might not even be that you really want them to CHANGE their point of view, but it sure would be nice if they could at least UNDERSTAND where you are coming from.

So how do we get a person to REALLY understand the way we see things? I certainly wish that I could just throw out a snappy little label and have them ‘get it’. “I’m blind”. “I’m visually impaired”. “I don’t see faces well”. “I’m a Christian”. “I’m a republican … most of the time”. “I’m a musician”. “I’m a worship leader”. “I’m a dad”. “I’m a husband”. But it just doesn’t work very well. The person hearing me say that may not have any experience with what it means to be that thing. Or if they do have experience with that label, it may be a different experience than mine. And therefore it will lead them to believe that label means something different than what I mean by it.

I guess telling people about yourself with little labels is a good start. But I hope you are following my thought here that it could also lead their perception of you astray. And yet we all long to be understood.

I don’t see any other way to allow people to really get to know us than to spend time with them and to share about our selves.

In our culture, it seems like we are on a quest to streamline everything. We want to do things as efficiently as possible. And if we can do more than one thing at a time, that’s even better. That’s why I clean the dishes while wearing one earphone that’s playing news podcasts, but the other one is open so I can tutor my daughter on her piano lesson. (It’s also why I sold both of my PC computers and am typing on a MAC at this moment.) But when it comes to getting to know people or letting people get to know us, there is no substitute for TIME.

I guess none of my friends really know what it looks like to see the world through my eyes. One of them jokes that it must look like a ‘doughnut of fog’. But since my friends have spent so much time with me, they can kind of guess what I will be able to see and what I won’t. I still surprise them. I still surprise myself. You’ll never know anyone completely. You’ll never know yourself completely. But being known or knowing completely should not be our goal. Being on the path to know others and to help them know us is the goal.

So I guess those labels are a good starting place. But they are just that; a starting place. I guess that means I need to keep telling people that I’m blind even though they won’t get it at first. But at least I have started us down the road of them being able to know me better. If I choose to not ever mention it, and let them just think I’m weird in various ways … because I bump into things from time to time or ask stupid questions, then I choose to limit how well they can know me. It may be easier on some levels to just not mention it, but I need to realize that I’m limiting how well they can know me, and that’s not worth the ease of staying silent.

I have a friend who has recently been realizing the importance of helping people know you. You can be really into others, but never let them into you. You can be really great at asking other people questions and being a good listener. But you also have to be willing to share about yourself. I think we choose for various reasons to not share of ourselves. It can be frustrating, time consuming, vulnerable, etc. But I feel we need to remind ourselves that it’s worth it … or maybe it’s just me who needs to remind myself.

I guess after years of living with this disability, I am still learning how and when to communicate it to others. But it’s a significant factor in my life, and so if people are really going to know who I am, then I guess they need to know about this part of me.