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 around 20/200 which made me legally blind. I
was wearing glasses and sunglasses by the age of two. If someone is
20/200 they need to be 20 feet away to see that that a person with 20/20 vision can see 200 feet away.
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. (Thee will be new blogs on this as of 2013 I was told I was a candidate to drive with bioptics and now at 51 have a license) 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 constantly 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 #80 bus” 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. But I 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. Some of these will have their own posts.
- Software to enlarge font. Windows - ZoomText. Mac MacZoom.
- Magnilink Student Pro CCTV to see the board
- Monocular/mini binoculars to see blackboards/whiteboards, menus at fast food, screens at airport, street signs when walking, bus number
- Magnifier books menus
- Bus or walk. Bioptic to drive.
- At school as a child all my markers were labeled with the color
- Red contact lenses. Several different color contacts.
- 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 an AS degree in computer
science and am certified as a Montessori Primary Teacher. I am currently completing by BS in computer science. 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? from http://www.achromatopsia.info/
“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.
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