As I squint and hold the book right up to my nose I hear “Why don’t you get better glasses?” I have heard this many times. I want to scream “Seriously! Do you think I am choosing to read this way? And never drive” but I bite my tongue and respond “I have a visual condition that cannot be corrected with glasses or contacts” They give me a strange look and walk off.
I was born in 1964 and when I was about 6 months old my parents noticed I reacted strangely to light and there was a shaking of my eyes. This shaking of the eyes is known as nystagmus. “Nystagmus often accompanies vision loss acquired at birth or soon after. In achromatopsia, it may be 3 to 6 months before the nystagmus is observed by parents. In infants with rod monochromatism, the nystagmus is usually rapid frequency and of low amplitude (fast moving, but only a small angle).” (http://www.achromatopsia.info/nystagmus/) My parents began taking me to ophthalmologists and specialists. It was discovered and had extremely reduced visual acuity, totally colorblind and very severe light sensitivity. The diagnosis was complete Rod Monochromatism a form of achromatopsia. (http://www.achromatopsia.info/) My best correct vision acuity was less than 20/200 which made me legally blind. I was wearing glasses and sunglasses by the age of two. If someone is 20/200 they can only read the largest E on the eyechart.
What I can and can’t see. Often I am asked what I see compared to someone with 20/20 vision. This is hard to answer since I don’t’ know what they see. So the best way is to give examples. If I go outside without my red contact lenses and sunglasses all I see is brightness. I cannot even see a car or house. I am totally colorblind so everything is in shades of grey. In school I could only see the blackboard from the front row if I used mini binoculars or a monocular. I could not play sports since I could not see the ball. I cannot drive. I have to have a large monitor, enlarge the font and sit very close to my computer. I used large print books in school and still had to hold them close to my face. I cannot read menu board at a fast food restaurant.
I have had some very hard times and I only discuss these as a way to get people to understand how things they say can be so thoughtless and hurtful and I know many other children are going the same pain. I was teased daily throughout my school years all the way through high school. I was either teased because of my vision or teased because people thought I was faking. When asking a teacher to get my test large printed again he replied you need this one large printed too as if I had a 24 hour blindness the first time. While in college studying computer science and getting extremely good grades often the highest in the class, I went to speak to a dean about a new degree (computational physics) and the career options and he replied I can’t imagine a job you could do with your vision. I constant got people saying “You don’t need sunglasses it isn’t sunny out” yet for me cloudy or overcast and blinding bright. I would say to a bus drive “I am visually impaired is the the #80 buss” and the reply I often got was “It’s on the front of the bus read it”. I never understood the need for people to make rude comments.
Some of the hardest things I encounter are due to people not knowing or not understanding. An example would be if someone waved or smiled at me from across the gym I can’t see it then I hear from someone else that people think I am a bitch and unfriendly because I do not acknowledge their gesture. I have a very hard time recognizing people I don’t know well even up close so I am unable to go up to people back stage and talk to them if I know them from the forums or other shows. If I am at the gym working out with someone and I need to find him or her I have to walk up and down every row I can’t just scan the gym to find him or her. When I am introduced to people in a group I am not usually close enough to see them so if they come up to me at another point I usually don’t have any idea who they are. Due to the colorblindness I am unable to do my own make-up since I can’t see if I mess it up. Before I got my red contacts I used a white cane and even had a guide dog for a short time. This was especially hard for people to understand since I had some vision. Bu tI was borderline on getting round without it and tripping down steps or bumping into to things. The red contacts combined with dark sunglasses help enough that I can get around on my own only on occasion tripping or hitting things. Simple things like approaching a building with all glass I can't find the door without walking all along.
What are some of the solutions so everyday issues for people who are legally blind.
1) Software to enlarge font, mac os has it built in
2) Monocular/mini binoculars to see blackboards/whiteboards, menus at fast food, screens at airport, street signs when walking, bus number
3) Magnifier books menus
4) Bus or walk
5) At school as a child all my markers were labeled with the color
6) Red contact lenses
7) Dark sunglasses
In my employment I have had to find solutions. When I did computer programming I provided my own 19-inch monitor and bought the software to enlarge font. I was only able to accept employment on public transportation routes and that I could get to in a reasonable amount of time. Most of my jobs my travel time was 2 hrs each way. As a Montessori teacher I had to make sure my co-workers and assistants knew I could not see what was happening very far from me on the playground, my assistants handled anything that had to do with color ie making sure all the right colored pencils were in the right color holder. I was able to be a very effective employee with just slight modifications. The hardest part about the disabled with employment is not difficulty performing the job but the attitudes of employers.
I have not let my disability stop me. I excelled academically. I have a degree in computer science and am certified as a Montessori Primary Teacher. I took public transportation to school and work. As a parent I tried to expose my daughter to as much as possible even using public transportation to get to these places. Before I met Chase and for several years after I got to the gym and trained alone. I always tried to find a way to be as independent as possible.
I have not let not being able to drive stop me including living in the snow. For 5 years we lived in Buffalo Grove, Illinois during this time Chase had a job in which he traveled often so I would train alone. There were many times during prep I would walk back and forth to the gym 3 times in the snow in sub zero weather. I had a goal and I was not going to let not driving stop me. At one point during my weight loss the time the bus travel took for my job did not allow me to make it to the gym. I lived too far away to walk and the bus did not run early enough to go before work or late enough to go after work so I bought enough equipment to set up a small gym in my garage. There is always a solution.
I have had some wonderful experiences that I never would have had if I were not legally blind. In 1984 I was a member of the US Ski Team of the USABA (United States Association of Blind Athletes). As part of the team I participated in the World Games for the Disabled in Austria. Legally blind and totally blind skiers each have a guide that yells directions as they ski. As a child I went to summer school know as Daily Living Skills where legally blind and totally blind children learned basic skills cooking etc and how to do it with their limitations but we also went on several amazing field trips in order to experience things. These trips included: helicopter flights, train to Los Angeles, flew to Los Angeles, farms, behind the scenes at Catapillar, behind the scenes in large bakeries like Orowheat and dairies, Disneyland, Magic Mountain, Zoo etc. Lots of really cool stuff to a 6-9 year old kid.
Why red lenses?
“Let's assume you have complete rod monochromatism. You would have no functioning cones which normally provide vision in high levels of light. You would need to use your rod receptors in all levels of lighting. However, rod cells can function only at low levels of light. Your rod cells quickly bleach out or saturate in bright light, leaving you in bright light without functioning photoreceptors. The brighter the light, the faster and more severely the rods would bleach out, and the more you would struggle to see.
At low light levels, however, you could see to function easily, because the rods receptors use a chemical photopigments that function best in low light.
Creating Night for Day
Thus, to help an achromat see better in the light, we must turn the light level into the night so the rods can function. Night scenes in the movies are often filmed in the daytime with dark filters used to darken the scene.
Any dark filter will reduce the light reaching the retina and may help the achromats begin to see better. However, not all filters are created equal. If we look at the spectrum of light from the sun as it splits apart into a rainbow we see that "white" light is actually made of many different (colors) wavelengths from red on the outside to purple and blue on the inside.
Shorter wavelengths like blue light have much higher energy than red light. The red light has only 1/15 the energy of the blue light. Thus red light has less energy to bleach out the rods in the eye. If we use a red filter on a complete rod monochromat, we lessen the bleaching of the rods and allow these individuals to maintain functioning rods to see with in bright light.” (http://www.achromatopsia.info/why-red-why-magenta/)
Much more information can be found here (http://www.achromatopsia.info/) for those who are interested including videos that show how people with Achomoatopsia see.
