As a child who was legally blind, I had been told I would not be able to drive. As I approached the age to get a license around 1978, I started looking into bioptic glasses. Bioptic glasses are glasses that have one or two scopes on them. These scopes magnifier from 2-4X If you can get to a certain visual acuity with the scope you can drive in most states. The specific requirements vary state to state. I was lucky that I was in California which had bioptic driving since about 1970. The pair my eye doctor tried were similar to these.Mine had a single 4x scope attached and the carrier lenses were tinted. So the eye doctor took me out as a passenger and asked if I could see brake lights, signal lights etc. I could not. The problem was there was no protection from the light with the scope and no protection form the light on the sides of the glasses. I also did not know about red contact lenses at this time. I could not see the red lights or brake lights all. My dream of driving died that day and the doctor did not know how to deal with the specific issues related to Achromatopsia- total color blindness, severe light sensitivity, along with low visual acuity. If it was just the visual acuity of 20/200, I would have been driving but the other two were the problems. So for the next 25 years I resigned myself to the fact I would never drive.
In 1995, I got my first set of red central contact lenses from UC Berkeley. Here is an article about them Seeing the World Through Red Tinted Glasses. They were amazing when I combined these contacts with sunglasses outside, I was not blinded by the light. They also have the effect of allowing red light through. I could see the red signal and brake lights. It does make greens go dark so I could no longer see the green lights. None of the eye doctors mentioned driving so I continued to think I could not.
My Ocutech
The chance appointment that changed my life. In 2013, I learned about Dr Windsor of the Low Vision Center of Indiana. I discovered he specialized in Achromatopsia. What a change most eye doctors have never heard of it or have any idea how to help. I decided to see him in May 2013 to try out
My red and brown filter
different color contacts lenses because I found my reds were not the right color for school inside the classroom. He asked if i wanted to be evaluated to be able to drive. What!!!! Really!! Drive!! Hell yes i do!. So he tried the ocutech bioptic on me and had me read the eye chart. He said I was a good candidate but it is a long road. We have to find the right color combination of filters and contacts. Finally in Dec 2013, I received my Ocutech but I had to wait until May 2014 to go to Indian again to try to figure out filters. In May I went back to try out filters. I needed sun but it was overcast the entire time I was there so we pretty much had to guess. We decided on NARZ contacts and red contacts and the filters would be custom made red in the front and brown wrap around to protect me from the light coming in.The double layer of red made the brake lights and red light really pop out. I spent the next few months as a passenger practicing with the bioptic. In Oct 2014 the big day came to start drivers training. My training was through Driving to Independence. I did about 35-40 hours of behind the wheel with Jill and Jason. The red filters make it so I do not see green lights but I feel much more comfortable seeing the brake lights and red lights. If I don't see a
Troublesome signals for me
light then it is green. The only presents a problem making left turns where there is a signal with 5 lights. It could be a protected green arrow or a unprotected green solid.They do not go in the same order each time. It is often dependent on traffic. So, I am working on trying to figure out a combo that will work to see all lights. What I am going to try is red filter for my regular vision and amber or dark grey/green over just the scope. This is getting very pricey. Every pair of contact i try are $200-450 per pair and if they don't work I just have to try another. I read a blog about driving and the person had the same issue. It was called My Miracle Drive. i saw his set up and I am going to try it. He uses NOIR red fitovers that are cut to allow the ocutech scope to fit
My Goal
through. I ordered a custom filter for the scope and will try my NARZ or brown contacts. I need to cut the NOIR fitovers and will hopefully be having that done on a milling machine at Arizona State.
On Feb 6, 2015 I took my behind the wheel driving test and passed!! I did not get my license that day because for bioptic driving teh test has to be sent to medical review along with my form signed by an eye doctor within 60 days stating that I can see 20/40 with the scope and what my vision is without the scope. A few weeks later
It's official!!!
I got the paperwork form medical review to take to the MVD to finally get my license. I went of Friday March 5th and the computers were down for the entire state of AZ. No license. Finally Monday March 9 I tired again and came out with my first drivers license at the age of 51!!!
There is still a lot I am working on. The green lights are one of them. Another issue is the setting or rising sun low on the horizon. When the sun is low but behind me the lights don't look right I can't tell them as well. Sometimes I think the yellow is lit but it is not. When driving into the sun when I dip to use the scope I am blinded but the sun coming straight in. I need to either avoid this time of day or find a solution. Right now I drive familiar places. I have been doing more freeway practice with Chase so I might be ready to make a solo trip down to ASU. I just wanted several trips to get confident with lane changing and traffic merging in and out.
Upcoming posts:
Shopping for the best car
Tricks I use when driving
Problems I face
Here is a video of me driving. The iPhone slipped so it is crooked. I will make another.
I decided to change the focus of my blog to talk about life with Achromatopsia; so I decided to repost this blog from Feb 2012. Look for new post on my journey to driving.
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.
“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.
