The story of my blindness

January 20th, 2014

This is a little long. I don’t often write about being blind, or share it with just anybody I meet online. It’s not that I’m ashamed of it, but why should it matter? This in response to the simple statement I received from someone I was talking with through email, “Tell me about your blindness.” How much do you want to know? I tried to be as to the point as possible, but let myself run a little with the words to give a more broad outlook on where I’m coming from. Ready? Read, enjoy, and don’t be afraid to ask questions.

I'm 100% blind, or totally blind. Though that might sound like a terrible thing to deal with, I can do just about anything that everybody else does, including using a computer to write this. I wasn't always blind, so I understand things like what colors are, and what the stars look like. Getting along in life is a combination of all my life experiences. Somethings I learned to do before I was blind, and just modified them to keep on doing them. Other things are things I had to learn to do after I went blind, like reading Braille, and using a long white cane to walk with.

A definition

Legal blindness is having your best correctable vision be 20/200 or worse. That measurement means that when the blind person stands 20 feet from the eye chart, he sees it just as well as a normal person can see it from 200 feet. I mention that statistic, because I once emailed someone to complain that visually impaired people had a hard time using their web site. They replied that that they wore glasses. Does that make them visually impaired? I had to respond that it might make them technically impaired, but blind was the word I should have used.

I once demonstrated to a class of grade school age kids by drawing a 1 inch square on their white board, and one that was 10 inches. At the time I was legally blind, with vision of 20/200. I told them that when I stood the same distance they were, I could see the big square the same as they saw the little square.

Hmm... I suppose being illegally blind means you're wearing a blindfold, or just squinting your eyes really tight to pretend like you're blind.

Some History to help you understand some of my experiences with blindness

I didn't start out blind. I used to haved perfectly normal eyesight, with a little astigmatism. I spent 8 years on active duty in the military, and 9 more in the National Guard, and only left at 17 years of service, when my eyesight failed. I was qualified as expert with a rifle and pistol, I even went to Gunfighter School to lern to fast draw, and hit targets accurately. In one contest we did, I finished 2nd in the class. I first operated heavy weapons systems, then in the National Guard was a maintenanceman on Air Traffic Control Radar. A job that demanded fine tuning of electronic circuits among other things.

The short story for the cause of the blindness is that it's a family history thing. Similar to how some people are prone to get fat, or bald, or have heart disease, in my family there's a lot of blind people. The exact name for the disease has never been pinpointed. Some doctors call it Glaucoma, others have called it RP, Wagner's disease, and my doctor called it Uveitis. I think his diagnosis may be the closest, but not exactly. Uveitis means inflammation of the eye, and that's what happens as this disease attacks the eye, but there's more to the disease, and the eyes are only an unfortunate victim of it. I also have a lot of symptoms that a diabetic person has, including meuropathy. Even the blindness closely resembles the kind that a diabetic person might get. I'm not diabetic. I've been tested for it many times, and always come back with the result that I don't have it.

That's the medical side of it in a nutshell. What about my personal story? How do I do emails, use technology, read web pages, fnot to mention build web pages?

First encounters with blindness, or More family history

Rolling back the clock a little bit, I always wondered as a kid if I, or one of my siblings might go blind someday. My mom went blind in her 20's, 2 of her 3 brothers were blind, my grandma, and 1 of her 3 brothers were. Before that my great grandmother, and her father before her were, and possibly a couple other relatives somewhere in there as well. When asked, my family assured me that it didn't run in the family because nobody went blind for the same reason. Meaning that doctors never gave the same diagnosis. However, when asked about their symptoms though, everybody had the same story. The main difference being in the age it all started, and the speed it progressed.

Knowing all that, I was always fascinated how my grandma and other blind relatives did what they did, and lived a normal life. Cooking, cleaning, holding down a job, going to college, and all that. My grandma was a far better housekeeper than most sighted people I know, including my own wife. (If you're reading this, sorry, but you know it's true. ) Her kitchen was immaculately clean and organized. Every room in the house was regularly vacuumed, dusted, and washed. After my grandpa passed away, she had a network of family and friends to do the things he used to do. My cousins regularly mowed her yard, family helped to work her garden, and make repairs around the house. . She recruited her grandkidds every year at Thanksgiving to put out her Christmas lights and decorations, and take them down before her company left on her Christmas get togethers. She had a washer and dryer, but would sometimes walk the 2 or 3 blocks to the down town laundromat to do her clothes, pulling her baskets behind her in a little red wagon. On visits to her house I would sometimes go with her, and was probably more fascinated at the amazement that people in the laundromat showed at her ability to do the sorting, folding, and all the tasks involved in doing laundry. I knew, it was just what grandma did. If she didn't do it, nobody would do it for her.

As long as I remember we sent letters to her by tape recordings. First it was the old open reel tapes, then later cassettes. She had a CB radio base station when that craze hit, and when we made visits, people along the route would relay messages between us to let her know we were getting close. Once we were in range, it was always fun to radio her ourselves on the CB we had in the car and talk to her.

I think that having the question mark of blindness in my life was a big factor in deciding to join the Marines. In the military you get to go places, and see the world, and if I was going to be blind some day, I wanted to see a lot of it. I've sure been a lot of places. From the mountains to the beach. From the desert to the Artic Circle. I've lived, worked, and been deployed to places like North Carolina, Mississippi, California, New York, Wisconsin, Michigan, Panama Canal Zone, Tokyo Japan, Okinawa, and Norway. (which is a much happier place than Norwegia. Extremely cold in January, but still more friendly than Norwegia. For readers not familiar with Norwegia, you really need to discover the archives of the Nobody's Listening Podcast. Google it, and knock yourself out with laughter. Just pay attention to the warning disclaimer that shows up on the early episodes, and a few of the later ones. )

Have a look at this page: EP 38 – Disney Drama

Or see if this link will grab the audio file: Download

Back on topic

I was told that I had cataracts when I was 25, and serving in Panama during the time when Noriega ruled the land, and just months before Operation just Cause that put and end to his government. Within a year of leaving active duty I had my first cataract surgery. From there the blindness slowly crept in.

When I was 34 my eyesight was getting to the point of causing real problems at work. I hoped it wouldn't, but it was an uncomfortable situation, waiting in anticipation for what I knew was going to happen. My doctor performed a surgery on my weaker eye, one that I had no vision in for years. It was a success, sort of. I only regained 20/200 vision in it, but it helped the other eye not to be under such duress, and a little depth perception came back.

This was early in the year, but by my birthday in October the bottom fell out. My birthday was on Monday that year, and on my drive home the Friday before, I had to pull over, and find a house to call my wife to pick me up. It was the last day I worked for a long time. Within the week an emergency surgery was scheduled, but in the long run it didn't work out. Because of that, I always tell people that blindness was my 35th birthday present.

First reactions to blindness

It may sound crazy, but it was almost a relief, instead of a stressful moment. The other shoe had dropped, and I could set out to redefine myself.

I had a family to support. My wife was a stay at home mom, but she managed to get a job pretty quickly. I also got in contact with state agencies to apply for disability. Between the two incomes we had enough to keep on paying the bills. I also took on most of the household chores.

My daily routine went something like this. Get up and get the kids ready for school. Clean the breakfast mess, do all the leftover dishes from the day before, clean the explosion of trash that seems to be an eternal fountain in the wake of 4 boys. The whole time I might also be reading an audio book. Pretty handy. If there was laundry to be done, I'd get it rounded up and processed, usually hanging it out on the line since the dryer never seemed to keep up. Otherwise I would do any other housekeeping chores up to around noon. After lunch I'd practice on the computer with some free demo editions of talking software I downloaded. After being trained and recieving my own full copy of the text to speech program, It made it easier. I'd limit myself to shutting it all down just before 3PM when the kids came home from school.

Normally, my wife would do laundry just about every day, and still does if kids presented her with dirty laundry. It's not that she particularly likes to do it, or wants to, its just that she somehow feels obligated to do it. Not me. Everybody in the house was old enough to know the rules. I made sure everybody had a laundry basket. On the day I did laundry I rounded up baskets. If clothes were in it they got washed. If the clothes were dirty, and laying near it, they didn't get washed. No clean clothes? Go naked, or sniff out your cleanest dirty shirts and underwear. You know the rules. It's not my problem.

I had a place for the dishes, pots, and pans in the kitchen. If I'm the cook, they go where I can find them. If I can't find them I don't look for pans, I look for the kid who moved it. Guess what. You're my helper in the kitchen today. Keep moving my stuff, and next time you'll be the cook, and I'll be there to help you. Did my pots and pans stop getting misplaced? Heck no, but my boys learned to cook at an early age. I had a similar rule about moving my dishwashing soap and wash chloth. They had to take over the dishwashing duty everytime they moved my stuff. My explaination was that if they wanted to take the responsibility of keeping track of the tools I used to do that job, they were therefore asking to take the responsibility to do the job for me.

Working and daily living

These days I occupy my time in building web pages, trying a little podcasting, and helping to ride herd on a stampede of grandkids. I can use computers, and most kinds of technology. Some common items a blind person might use every day include a Braille or talking watch, tags or stickers to mark things with. This comes in handy for things with flat buttons like those on most microwave ovens. You mark a few key areas like the start and clear buttons, and maybe a few special functions, and the number pad. Feel for a particular shaped dot, or sticker, and you’ll know what to push. I used to keep pins or little plastic clips to attach my socks together when I took them off. It helps to keep them matched, and you don’t have to worry about a lost sock, or wearing a blue one with a red one.These days my wife has taken over the laundry duties, and as long as she wants to sort them, I won’t get in her way.

The technology stuff really isn’t so hard to do. Computers have programs that read the text on the screen. Cell phones can even talk, but smart phones do a much better job of reading the screen than regular cell phones.

Before I got my iPhone, I had a cell phone with an added speech program that was pretty good at letting me do things like texting and email. Before that though, all I could do on a cell phone was issue a few voice commands. I couldn’t even add people to my contact list unless someone did it for me.

With my smart phone, I often use it like a little miniature laptop. I have a Bluetooth keyboard to use on my lap, while I drop the phone in my shirt pocket, and through the earbuds, listen to what the voice is reading to me. I use it a lot that way at church. I can take notes at meetings, open my bible app to follow along with a sermon. I can get digital Sunday School lessons to study before hand, and use in class. I even have a copy of the hymnal we use. I had to convert it though. It originally came to me in a digital Braille format, and it works out better after I converted it to plain HTML. The main trouble I’m having with it now is that it’s slow when I have to search for something in it. I’m working on another conversion to use it as a database, rather than a 600+ page scrolling document.

Of course, not all blind people know how to get that deep into tweaking their digital files. Not all sighted people know how to do that either. It’s just something I learned shortly after becoming blind.

What might be the best thing to do if you meet a blind person

It’s OK to ask questions about what they’re doing, or a device they’re using. At least I can say that I don’t mind it. Sometimes people will approach my wife and ask her what I’m doing, or something about that wierd machine I use. If they ask me, they’ll probably get a better answer.

What’s the best way to help a blind person?

It depends on what they’re doing. I usually don’t need help, but I’m not against it if people do it right.

Here's an object lesson on giving help I learned in the Boy Scouts. As part of earning my First Aid merit badge we learned all kinds of life saving techniques. Mouth to mouth, CPR, tieing bandages, and all those interesting things. We were asked by the counselor to imagine that you're in the park on a nice Summer day. You see a middle aged man laying motionless near a big shade tree. What's the first thing you do.

One scout answered, "Rush up and start mouth to mouth."

“Nope, you just killed him.” The counsellor said.

Thinking the imagined ailment to be even more serious than first thought, the next scout shot back, "give him CPR."

“Nope, if he wasn't already dead, he might be now.” Was the counsellor’s responce. Taking a look into the eyes of each of us scouts surrounding him he slipped out the hint, "what's the first thing you do before you administer either mouth to mouth or CPR?" The light bulb went on in one of the scouts, I'm sure it wasn't me, but with his first word from his mouth it all made sense.

For those of you who have never had Red Cross training, the first thing you do is shake the patient, and say in a loud voice, "Hey! “Are you alright? Are you awake? Can you hear me?" The victim in this little story was only napping. Enjoying the cool of the shade tree on the hot Summer day. He didn't need help. Over eagerness to be a hero could have caused real and lifethreatening problems.

The point of the story, ask first. The help that you're eager to give may not be the help that is actually needed. This is good advice for any time you feel like helping someone, whether they’re blind or not.Help is best when it’s exactly the kind of help that’s needed, not what you imagine it to be.

A practical word on using an iOS device

Like most other Apple products, it has Voiceover built into it. It's Apples version of the speech program used by Microsoft since those old Windows 95 days. The difference is that though Microsoft has claimed to understand the needs of the blind person, Apple has been the one to have actually acted on it and developed it. Voiceover has become a high quality screen reader, providing the level of access to the menus and operating system that a blind person needs. With the Voiceover feature turned on I can do almost anything a sighted person can do. A few exceptions might involve using a game, or an app that presents information in a graphic nature. Images, charts, maps, and stuff like that. The image alone doesn't convey the same kind of info to the screen reader, and the blind person is out of the loop.

When a cool, new app is released, I always have to pass it through the filter of, how useful is it when you add the layer of the screen reader into the mix. I balk at paying money for an app I can't use.

Want to experience the iPhone as a blind person?

Get the free app, VO Starter. It's a tutorial on the gestures you'll need to use. In the Voiceover environment for example, you touch the screen, and it reads what you touch. It doesn't activate it. If you double tap the screen, it activates the last thing the voice read. Make sense? Touching lets the blind person learn what's displayed, so the double tap makes sense to activate an item.

Got the app? Now triple click the home buttton to turn on Voiceover. If it doesn't work, you may need to go into Settings/General/Accessibility and activate the triple click home feature to toggle Voiceover on and off.

Still with me? Go ahead and start the VO Starter app. With Voiceover on, do a 3 finger triple tap to turn on the screen curtain. Hahahaha. It blanks out the screen. No cheating now. You're now illegally blind. Listen to the voice, and the instructions the tutorial app is telling you. OK, if you need to do the 3 finger triple tap again to lift the screen curtain and take a peek, I'll let you, but try not to do it. You want the full experience, right?

Work through the tutorial, and you'll see that a blind person can use iOS pretty well with just modifying the gestures a little.

If you're all done, whehn you triple click the home button to turn Voiceover off, the screen curtain will also lift.

Still have questions? Do you need something clarified? Contact me and let me know.

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