In the hopes that it can enlighten people of some things a visually impaired person might experience, I'd like to share some of my personal life and events. Everybody is different, but sometimes it is helpful to know what others go through to help us understand ourselves. In the sections which speak to vision, this document concentrates on the effects of the vision conditions rather than the description of the conditions.
Each person is born with their own set of characteristics and environment. Each of us is raised in different ways and taught different things. We grow up with ideas and opinions based upon who we are and what we've experienced. So it follows that even though I was born with a vision impairment, I grew up knowing the world as I saw it and didn't fully understand that there was more to see.
I inherited the same basic set of eye problems that my father has. I have had many of them since birth. I was born with several medical conditions affecting both of my eyes. The most severe condition is called Aniridia, which is a loss of the Iris. The iris is the colored part of the eye which controls the pupil that limits the amount of light entering the eye. Because there is no internal control over the light, my eyelids close to provide that function. So I have a physical appearance difference as well as limited vision. I also have a cataract condition which is large enough to notice a blank portion in my view sometimes. This normally occurs when looking through magnifiers, binoculars, or looking at white objects.
One result of the eyelids being almost closed is that the field of view (vertical) is greatly cut without moving my head up and down. With the cataract condition, the brain tries to adjust the eye positioning around the cataract but with such limited view it is hard to do. I have been told that it appears I never make eye contact with people even though I'm looking at their face in my view. The best vision seems to occur looking over the cataract, with the appearance of me looking under their face. If I'm walking though, I tend to look at the floor through the cataract so I can also see ahead of me (over it). That gives the appearance that I'm looking down even though I see things in front of me also. One side effect of this is that I developed bad posture. Because my head is often pointed downward, my neck and back have grown accustomed to this and it looks like I'm always leaning forward.
Normally the eyelids do a good job of light limitation, but I have problems with very bright light conditions (such as bright sunlight or very white backgrounds) or dark situations with light sources (such as headlights coming toward me at night or flashing lights brighter than surrounding light sources). These situations make all but the bright light items impossible for me to see. I also have a hard time in lower contrast situations. Since the eye is allowing only a percentage of the brightest light source in, light levels close to that are seen as mostly equal in character. Light or faded print (ink) on light material falls into this category. One example of this is when facing a wall with a window having sunlight outside, I could hold up my hand in front of the wall part of the view and not be able to tell how many fingers I had raised. If there was equal light in the room as that outside of the window, I could make out my hand and fingers again.
One effect of the Aniridia is that I can deal with lower light situations if there is no bright lights in the view. When alone, I would have the lights in the room dimmed or use lower wattage bulbs. I could read in these conditions because the light source was not in my view and there would be no glare off the material. People would often come into a room where I was reading and turn on brighter lights, making the comments that I shouldn't be reading in the dark. I know these people are just trying to help, but we should respect the fact that others are probably comfortable with the conditions which they live in. In other words, if I wanted brighter light, I'd be capable of turning more lights on.
The picture that I see is not really out of focus (such as you'd see in an unfocused photo) or blurred (as through an unwashed window). I can recognize objects and shapes, but there is a lack of detail. For example, when I see a person coming toward me, I first see the figure, then see the color of clothes, then skin/hair color, and finally would be able to tell you who it is once they are really close. Even though I might be standing right next to somebody, I would not be able to tell much detail about the person. I cannot accurately guess a persons weight, age, or height (excepting compared to my height if they are standing next to me).
It is possible for me to judge distance based upon my experience of ratio, but it probably isn't the same perception as others have. Distant items will appear smaller to me than to others, but I use prior experience to estimate the size to its distance. I can also judge speed based upon the size difference of moving objects, such as vehicles.
In all that I have read about vision facts, I have yet to read about a known cause for Nystagmus. However, mine seem to mostly occur when I am really focused on an object with high contrast. My first knowledge of it was when I woke up one night in a dark room and looked at the red LED clock by my bed. I could make out the time, but the digits were floating around in the air. This sometimes happens when reading from the phone book or a magazine, the words seem to move out of place. It is an interesting and unusual feeling, and thankfully occurs very infrequently.
Although I was aware that I was different from other kids, my junior high school years started my discovery of how bad my vision was. The teachers would write important words or assignments on the chalkboard and I would be the only one who had to stay after class to walk up and write them down. I was also frequently asked why I didn't wear my glasses, but glasses never really helped my vision. In some respects, I wonder how I managed to have report cards featuring C's and B's (average and just above average) grades throughout my school years.
Once in high school, I had other events of realization. One of our first assignments in art class was to look around the room and freehand draw our interpretation of any object we choose. Naturally, I picked the closest one and my picture looked more like a cartoon drawing then the real thing.
In typing class, my teacher insisted that I use the large print books even though both my mother and I objected to that demand. The larger print was easier to read, but the book was so big that I had to turn my whole body to read from one margin to the other. Turning pages also meant using both hands, so I'd have to reposition them on the typewriter after each page. These things tend to slow down typing speed average. I am all in favor of large print material being available, but I am also a strong believer that the person with the vision problem is the best judge of what works for them. The best training for future life is using what will be required in the actual workplace, which usually involves normal size print material. Many ophthalmologists agree that using the large print material during school years doesn't hurt the vision but does make the person less likely to handle regular print later in life.
The other kids in high school also taught me a few things, but I don't think it is what they wanted me to learn. Since I was one of the shortest kids in school, I got put on top of the lockers as a prank. There were two of us that got put up there and neither of us liked it very much. It took just a few days for me to realize that there were benefits to this style of treatment. First off, I had a better view from on top of the lockers than I had from my normal view of everybody's back. Also, everyone is looking at me and I'm the center of attention. I started looking forward to the event, but then it was no fun for the other kids and they quit doing it. I started learning to make the best of unpleasant situations and that has come in handy many times since.
Before I finished high school, I signed up for a correspondence course in TV repair. Several teachers and a bunch of classmates told me there was no way I'd amount to anything in adult life and I shouldn't even attempt to learn TV repair. Even so, I had my first job in TV repair less than a year from graduation. I credit my parents for teaching me to know my limits but to keep the focus on what can be done. In other words, do the best with what you have and don't make excuses for what you haven't got. Over the years I have not only surpassed what the teachers and classmates thought I'd accomplish, but I exceeded what I thought I'd accomplish too.
We lived in a small town and there were three TV repair shops in the area. I decided to move to a bigger city where there would be more TV work. So at the age of 24, I moved out of my mom's house and went off on my own.
Although I realized my vision was subnormal, I was doing everything possible to downplay or hide that fact. I would not talk about vision nor would I admit in public that mine was bad. Sure everybody knew it, but I didn't want to accept it. It was hard to recognize people because of detail loss. I could not see such things as facial expressions or hairstyles unless I was right next to somebody. Even then, I couldn't usually tell if their hair was nicely combed or if they had unusual facial features. I used voices to identify people I knew. Hearing and memory made it possible to bluff my way through pretending that I could see more than I actually did. However, the new city exposed me to new people and new visual challenges. I had to learn about and memorize a lot of new things all over again.
The point which I first started being open about my vision problems was in this new city though. A new friend suggested that I could volunteer at the local School For The Deaf And Blind. I did that for several months until I had to stop because of a new full time job.
Of all the things I have done in life, nothing has been as satisfying as the time I spent doing that volunteer work! My task was to help the students as need be, but they taught me that a disability really isn't if you put your heart into your effort. Their spirit and desire to overcome gave me a new outlook upon my own vision problems. I credit that wonderful group of people for teaching me far more than I ever taught them! If you've never volunteered for a place such as this, you've missed out on a life changing wonderful experience!
I went into that experience feeling like I was the only person who had such bad vision problems. I left feeling like I wasn't doing enough with my life even with my vision problems. I encountered many people who were worse off than me (many being completely blind) who weren't shy at all about their condition. They did their best with what talents they did have. Most of them left a life long impression on me.
The attitude of the blind girl that painted really good pictures using memory of what she used to see was the one that got to me the most. She was only a teenager, yet the family income partly relied upon the selling of her paintings. She said the best way to deal with problems is to approach them openly and honestly, even if it hurts emotionally sometimes. I didn't change overnight, but that was the start of a new attitude within me.
It was during this point in my life that I started paying close attention to what others were seeing. This is when I realized the amount of difference in sight. People standing behind me would be reading a menu mounted on a wall that I could barely make out was a menu. People would often point to large objects (like buildings down the street) that I might not even see. People were reading street names and other traffic signs before I could even make out there was a sign present. There was a large gap of vision, and I started looking for a doctor who could help me find a way to experience what everybody else saw.
I visited several eye doctors over a two year period. None of them had any real answers for me. I did not learn much at those appointments either because I did not know what questions I was supposed to ask. I was really not aware of my own medical conditions. Several years went by where I just tried to learn what I could. Aniridia is not a real common problem and so few books would even mention it.
The new job that I got was for computer repair rather than TV and stereo repair which I had been trained for. I didn't have a clue about computers when I applied for the posted job of electronics technician, but was told that if I wanted the job it was mine based upon my knowledge of electronics in general.
So over the next year, I learned about computer repair and operations. At the time I started, Commodore 64s and Apple IIs were the common computers with IBM compatible computers just starting to take over the world. I purchased a computer through my work and quickly became interested in computer programming. Some of the programs I was able to write were diagnostic tools for my work in computer repair. Since all of my focus was on my job and learning programming, I didn't get much vision research done.
The lady responsible for computer sales at our shop helped me with computer operations during my learning phase. She taught me how to do all of the basics and also provided useful references. I also became involved with a local computer club which was sponsored by my boss. I gained a lot of knowledge from those people and even hosted one such meeting at my apartment.
Additionally, I got involved with the local school district through my work repair contract with them. I met many teachers and shared simple math programs that I wrote for them as they gave me details of what they were looking for.
During the next year, several military cutbacks impacted the area because the bases and training facilities were such a large part of the local economy. The area businesses suffered and I eventually moved to another city. I wasn't able to get a job in the electronics repair field, so I found other odd jobs for awhile. One of the jobs I took on was stocking items at a grocery store. This temporary job has worked out to be my employment option ever since.
Though my employment was no longer related to electronics, I did continue with my interest in computer operations and programming. I even took some computer courses at a local community college to have paper proof of my computer ability, for attempts to land a computer repair or programming job at some point.
I was in my 30's when I found an ophthalmologist who put a few things straight for me. He not only talked with me in non-technical terms, but was the first to steer me to visual aid resources. I then had a foundation to build upon and started doing more intensive research. Most of my research was through books from the local library. Since I didn't do too well reading with a visual impairment, the process went pretty slowly. I did have an easier time reading with the use of visual aids though.
When my ophthalmologist sent me to a visual aid center, it was suggested that some of the devices available could bring my vision close to what everybody else had. I felt this might be the answer I had been looking for and dreaming about. After a couple of sessions with the opticians though, it was clear that none of the devices would be that miracle gift.
You can look at all of my personal visual aids either through this link or from my Vision and Health website.
We did come up with two devices that helped me with certain aspects of life. One of these (Beecher Mirage) was like miniature binoculars with a headband so it would not have to be held with hands. It allowed me to do things like watch TV from across the room instead of being just feet in front of it. I also got a reading cap for the Mirage that allowed for closer work like reading and detail work.
These two devices did help me, but they also introduced new limitations. The Mirage was great for TV viewing and watching birds just outside of the windows. But I already had two pairs of higher powered binoculars that I used for reading street signs and other nature watching experiences. Also, the Mirage was not practical for me in traffic situations. There is a blind spot type of area between regular sight and the magnified sight as seen through the device. Anything occurring in this space is not seen. So you might see a car in regular vision coming from the side, then the car disappears, then is there (really big) through the device. I never got used to that and therefore never used the device for commuting purposes.
The reading cap device also helped me alot, but had similar drawbacks as the Mirage. Though the reading cap made even phone book type readable, it was difficult to keep track of the place on long lines (such as books). The picture seen through the reading cap would be one word (about six letters of normal book print). I could follow along the line nicely, but then would have to get to the start of the next line. Reading was easier once I started using a paper clip to point to the line I was reading, moving it each time I started a new line. Even with the limitations, the devices were useful to have for some routine tasks.
With my reading cap in place and a basic understanding of my vision problems, I spent most of my free time learning about vision. I decided to start putting my findings in writing so what I learned could be shared with others. Soon I gained more knowledge about other peoples problems and could relate to what they said also. I found that every now and then I could help somebody else to understand their own vision a little better.
I found that I had successfully broken through the long stage of life where I didn't want to admit I had a vision problem. The process that started many years prior had finally been accomplished in reality. I realized that there is a whole lot of visual, medical, and emotional difficulties to be had, and my problem isn't the worst thing that could happen in life. I came to accept who I was and what I could and couldn't do. Even so, the research continued and I still hoped I'd find a solution for myself someday.
During this time, I was introduced to computer bulletin board services (BBS). These BBSs were simply computers hooked up to phone lines (via a modem) which allowed people to call it (using their computer and modem) to exchange messages and files. I became hooked on messaging this way and within a year had started my own computer BBS, named Circle Of Fellowship BBS to indicate that the atmosphere was like a circle of friends (or fellowship). The BBS lasted about five years and only closed because I moved from the residence where I was living at to an apartment.
The BBS took a lot of time and effort to run and I also continued to spend time with the messaging on the ILink network. I found some new friends through the BBS and feel that I was able to touch the lives of many people that I would have otherwise never had a chance to encounter. Because of that, I am grateful for the experience.
When I hit 40 years old, my vision started to deteriorate. Even the routine things I was so accustomed to doing were harder to do. About a year after I first noticed changes starting, the rate of deterioration increased. It became almost impossible to read print even with a 10X magnifier. Some people don't understand that it is so bad because I rely heavily on former knowledge to get me through. I am constantly coming across instances of realizing the lack of ability to make out something that I used to be able to.
Then I purchased a CCTV (Closed Circuit TV) text reader unit (Aladdin Pro+). This is basically a TV screen with a camera mounted facing downward to a document holding tray. The magnification level and focus can be adjusted for comfortable viewing of a document. This device restored my ability to read books and mail, make out monthly bills, and read other text. Of all the visual aids I had purchased, this device quickly became the most used of them all.
I am also experiencing Floaters now, which are impurities in the fluid of the eyes which may appear to be objects in the view. When these first started, I was often surprised by the images and would react by jerking my head away or flinching. I have less reaction now that I am more used to these, but they still annoy me when they occur.
Because the eyelids are normally mostly closed, the surface of the eye does not get the type of environment that it is used to. Normally, tear fluid is dispensed and blinking (eyelids close and open) distributes this across the surface of the eye to clean and moisturize it. Because my eyelids don't like to open, only a small portion of the surface gets treated. If dust or particles get under the eyelids, the eye has a hard time treating it alone. Sometimes the eyelids get irritated and swell. This causes more tear fluid production to help heal and wash. Unfortunately, the draining process for this extra fluid is inhibited by the lower eyelid being mostly closed. The combination of the irritated eyelids and extra fluid sometimes leads to infections behind the lower eyelid. Since the fall of 1997, I've been getting these more often. Fortunately, I am now more able to identify the early stages of infection and treat them sooner with eye drops.
When I first purchased the CCTV unit, the minimum magnification was more than I needed. Within six months of the purchase, I already required additional magnification from the unit. Before the first anniversary, I was using the highest magnification possible. The rate of vision deterioration was very severe.
During this time of vision deterioration, I have also noticed an increase in the effect of the cataract as it grows. I used to see a small black circle in the picture when using binoculars or high power magnifiers. Now, that black circle has increased in size in my view during these conditions and is also more noticeable when looking at light backgrounds. The spot moves around in the picture as the brain tries to position the eye for best view but with the circle not in the center. The movement is automatic and really quite distracting.
One thing I really need to say here is that I have realized an attitude change in myself recently. For many years, I was hoping and praying for some miracle to give me better vision. Recently, I find myself hoping and praying to just get back what I had. While I never stopped trying to do my best with my limited vision before age 40, I now even appreciate that vision more since losing some of it.
The last few years have also stirred some old emotional issues, but I am much better able to deal with them now. Because of the decreased vision, it is even more noticeable to others that a problem exists. I get the same questions and comments again about not wearing glasses and that if I would get more sleep, my eyes would open and I'd see better. At this point, I'd consider it a blessing to just have to deal with the wearing of glasses instead of having an appearance difference. Don't get me wrong, I don't think anybody should look down on people who wear glasses. But the sad reality of life is that it does happen.
Technology is always advancing. At this time, there may be new options for me to get an iris implant and cataract removal. It is my hope that a procedure can be done to stop the vision deterioration and possibly also result in a positive vision gain. I will update this document as any new information becomes available.
Personally, my goal is to have at least the same vision I had before the deterioration started. Life has been pretty good to me and I am fairly happy with it thus far.
My series of websites is a great tool to share information, my many experiences, and some thoughts. However, it is limited because so many people do not have easy access to the Internet. I'd like to get something published about my research and experiences and then promote it worldwide. This would allow more people to have a set of references available to them.
So if you have any questions or want to share any of your own experiences, please feel free to Email me.
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