“Can’t you get better glasses?”
By Jason F. - Franklin, OH
As a child growing up with an optical defect known as Blue Cone Monachromacy (BCM), I was often asked the question that I have chosen as the title for my story. I found it very annoying to say the least. When
asked, I wanted to respond by saying, “Really, are you asking me if I have chosen to wear some sort of substandard corrective lenses on purpose??”. Instead, I would generally respond by just saying, “No. I was just born with bad eyes that can’t be fixed.” The individual who posed the question would shrug their shoulders and go on about their business and so would I.
I was born in 1974 in a small suburb of Dayton, Ohio. So, I grew up during a period where little was known or understood about my condition. In my baby book, my mother noted that I had exhibited nystagmus where my eyes apparently shook or darted left to right as an infant. The doctors later, apparently, thought I was far-sighted for a period of time. I received my first pair of glasses at the age of 3 ½. Later on, I remember being told that I was “legally blind” and could see about 20/200 without correction and possibly 20/100 with.
I can remember going to ophthalmologists’ offices many times around the time I started school. It was always the same routine; they would dilate my pupils, have me stand at the end of a long hallway to tell them which way the “E” was pointing and then allow them to gaze into my eyes with some sort of instrument as I stared at an imaginary dot on the wall.
Around the age of seven or eight, I can recall having pictures taken of my eyes. This was before digital photography, so it amounted to putting my face into a giant flashbulb. I chuckle now as I think back because I can remember being told to try not to close my eyes while they took the picture. I can remember being in tears after a few exposures. Imagine trying to stare into the sun for a brief moment six times in a row, it wasn’t fun. Somewhere, along the way, we even made a trip to the low vision clinic at Ohio State University for some testing. Sadly, after all of the examinations and testing, I don’t know that my parents were ever given a diagnosis that was even close to being correct.
Before I was ten, my parents were told to take me to a regular optometrist to be fitted for glasses, as needed. The feeling was that there was no need to continue to take me to see an ophthalmologist as there was nothing further that could be done for me. My mother told me as an adolescent that she had been led to believe I had Leber’s Congenital Amaurosis. All she knew was that it was genetic and that her brother was severely near-sighted for a similar reason. Beyond that, I had no clue as to why I couldn’t see like everyone else. I settled into my teenage years believing my eyesight would always be about the same and that I would likely never drive a car. Further, my long-time optometrist excellent at examining eyes and providing standard eyewear, but seemed to know little more about my condition than I did.
Then, at the age of fifteen, an exciting thing happened- contact lenses. Up through my freshmen year of high school, I had always worn aviator-style frames, with thick, “Coke-bottle”, photo-sensitive lenses. I had always been told with the severe astigmatism that I have, contact lenses were never an option. By 1988, I guess the answer was Rigid Gas Permeable (RGP) lenses. After acclimating to my first pair, it was a whole new world. The correction I got from contact lenses was so much better than what I was accustomed to.
After getting married at the age of 21, I had a renewed interest in determining the cause of my vision impairment. My wife and I were both very interested in the effect my condition might have on any children we would have. I had also heard there was some sort of bioptic telescope that was available to help someone like me drive. Thus, we made a trip back to OSU’s Low Vision Clinic to learn the answers to these questions.
After a battery of tests, the senior doctor on staff there gave me his best diagnosis. He said he would need to do genetic testing to verify it, but felt that I was afflicted with Blue Cone Monochromacy. I have not had any genetic testing done, but am fairly certain his diagnosis is correct. I later discovered that BCM is part of a group of congenital disorders referred to as Achromatopsia. All of my symptoms and experiences fit the profile for BCM. Other than my uncle, I have never met anyone with a condition similar to mine. Thus, I continue to search for solutions to make coping with my vision loss easier.
Are you a rod monochromatism, blue cone monochromatism or not certain?
Blue Cone.
What is your age and gender?
Male, 36
Do you have other family members with achromatopsia?
I have an uncle with a similar condition, but his seems to be degenerative. I just learned that my uncle’s daughter (my cousin) has a 16 month old son that appears to have an optical atrophy, yet to be diagnosed. This is her second son; the first son has normal vision.
Have you met others with achromatopsia?
With the exception of my uncle, never.
Describe your problems with bright light.
Bright sunlight tires my eyes easily. Even with sunglasses I will often get a headache. It takes my eyes longer to adjust to a dimly lit room after being exposed to bright sunlight. I do not like being outside on a sunny day. If enter a room with a bright light source or a window, I try to position myself so that the light source is to my back.
How do you control the light and glare?
I have a pair of Oakley sunglasses with polarized lenses that I can’t live without. The polarization helps with glare and the dark lenses help me cope with a sunny day. I wear them 80+% of the time. I have found the additional contrast I get from wearing them makes viewing most things easier, particularly, watching TV and using the computer. The frames aren’t very tall, so I can look under them to view things up close that don’t require a filter. I prefer indirect lighting indoors and will choose to sit in the dark over turning on a bright overhead light, especially fluorescent.
When using the computer, I will drag select text to highlight it in reverse video. This makes the text white on a black background, which is much easier for me to read. I have played around with different Windows settings to change the display permanently but find that some programs don’t display text and images correctly.
Describe your color vision problems.
I often use the analogy that my color vision contains only the Crayola 8-pack of crayons, while a normal person has the 65,000 pack with the crayon sharpening tool. J Or, being an IT guy for a living, I will sometimes say my vision is 8-bit color vs. 32bit color for everyone else. I hated art class in school because I couldn’t pick out the correct colors most of the time without asking someone else, and certainly couldn’t mix paint.
I describe myself as being mostly red-green color blind. I seem to perceive blue-based colors the best. However, I have to squint or wear my sunglasses to read blue ink on white paper or blue hyperlinks on a web page. On a bright, sunny day, I can’t see red traffic lights or brake lights. Shading my eyes with sunglasses helps. With shading, I can see them usually within 20 feet, but not a chance far away. On a cloudy day, it’s easier for me to see them. I can see traffic lights much further away as the sky gets darker.
How do you deal with the color vision issues. Do you have some residual color vision?
I can see color, but really have a hard time identifying them. I have been experimenting with red contact lenses which seem to help my color perception. They really help me with reds. While wearing them, red looks to me more like what I believe a normal person sees it as.
It’s frustrating when someone points someone out to me in a crowd by the color of their outfit as the reference is pretty much meaningless. I don’t understand the concept of “matching” colors. Why can’t you wear navy blue with black? I have to have my wife match my clothes for me. I can determine the difference between navy blue and black dress socks, but sometimes have to see them side-by-side to perceive the difference.
How has it affected your life?
On some levels, it probably doesn’t as much as you think. There are certain things that I’m probably not aware of that I am missing out on as I’ve never experienced them as a person with normal vision. As I get older, I continue to discover tactics that help me adapt to different scenarios that most people don’t even think about. I discovered many years ago, with eyes shaded, I can read certain color combinations with much less squinting and effort. Polarized lenses are a huge help in reducing the glare you get on a sunny day looking at someone through a car window. I have a difficult time reading the overhead menus at fast food restaurants. So, I will often order whatever was recently advertised on TV or the same thing a lunch companion is having.
I find that I dislike most activities outside and anything that requires normal eyesight as it only serves to remind me of something I don’t have. I’m a big NASCAR fan and was excited to finally go to a race last year. I hated it, I couldn’t see well enough to identify which car was which on the track. If I’m forced to go to a high school football game, I leave my seat to pass the time and find someone to talk to on the way to the concession stand. At a pee-wee game, my daughter was once injured, but she was too far away for me to see. I only found out when I heard another parent suggest I run onto the field to check on her. Suffice it to say, I get a better view watching sports on TV at home.
People tell me they wave at me all of the time and I don’t see them. I fear they think I’m too arrogant or obnoxious to wave back, when in reality, I’m just not aware of them until it’s too late. I’ve had to train my family members to audibly respond when asked a yes or no question as I cannot see facial features well enough beyond 20 feet or so.
What were your experiences as a child?
I always had to sit in the front of the class. I was occasionally made fun of due to the thick glasses I wore or because I had to look really close to read anything. Contact lenses were a big improvement because they made me look “normal”. That was a double-edged sword, though. People don’t expect to see a person without glasses reading something three inches from his face. Thus, they would tell me I need to get some glasses if it was necessary to squint that much to read.
I discovered that wearing sunglasses was beneficial, not only for enhancing the vision I do have, but for obscuring any squinting I do in order to read. And, since people can’t see my eyes, they are more likely to draw the conclusion I may have been looking the other way if I don’t see them waving at me.
How has this affected your schooling?
For the most part, I did well academically. When I did have trouble, it was totally due to the fact that I wouldn’t ask for help seeing the notes on the blackboard because I was tired of being different. Fortunately, I was the type of student that remembered most things I was subjected to. You could argue that my memory made up for my loss of vision.
My mom got me out of PhysEd after the 8th grade after coming home with broken glasses three times that year. Suffice it to say, I wasn’t good enough at any sports to be picked for any team.
What are the social or emotional impacts?
Really, there are two main issues an achromat must deal with. First there’s the obvious functional deficiency of one’s vision. The second is the social acceptance and understanding of everyone around us. Many times the collateral damage from the second is far worse than the first.
There are programs, tools and assistance for people with blindness. Blindness is something most people understand. In many respects, an achromat is a “partially-blind” person living in a sighted, visually centric world. Anything with print on it is designed for people who see 20/20 with normal color vision. Coping with this is very much up to the individual. Statistics suggest there aren’t more than 10,000 of us in the United States. That means there’s little to no funding for research to correct the disorder or financial aid for the purchase of visual aids to facilitate the needs of those that have it.
Reality for me was this. Growing up, it was mostly just being different from everyone else. There were very few things that I was any good at. My career options were severely limited as normal eyesight is required to do almost anything I might have been interested in. That’s frustrating because everyone wants to be successful on their own merit and not have to ask for help to complete the most mundane of tasks.
I would say the most devastating thing for me is not being able to see my kids playing sports or participating in school activities that require them to be more than 20 feet away from me. Sure, in some circumstances, I could use binoculars to watch them. But, I still have to deal with snickering adults wondering why someone needs binoculars in a high school auditorium.
Are you able to drive?
Currently, yes.
If you drive, what was the process like to become a driver?
At the age of 16, during a routine examination with my new contact lenses, my optometrist said something unexpected. He verified that the vision requirement for driving in the state of Ohio was/is 20/70. He told me, with contact lenses, I was “really close”. He suggested I go to the BMV and give it a shot. So, I did. I’ve managed to barely pass the vision exam five times now. It makes me a nervous wreck even thinking about it every four years, but I have gotten the privilege to do something I never thought possible.
I will also tell you that going to the BMV to renew one’s driver’s license when you are “border-line” to start with has not always been a fun experience. I have found that I often know more about the vision requirements to drive in the state of Ohio than the local deputy registrars do. In fact, I once called three different BMV locations and got three different answers when asking the exact minimum vision requirement to drive.
Further, BMV employees are no different than anyone else. Some are confused when presented with a young person who can barely pass the requirement for day-time only driving. I generally ask them to be patient with me as I look into the vision screening device. It’s got black letters on a white background, which is about the worst scenario for me. My retinas get washed out by the white, making it exceedingly difficult to read the black. Over the years, some examiners have been more patient than others.
Do you use filtered contact lenses and if so has it helped you?
I just started experimenting with them earlier this year. The red ones I have really help me with the color perception, particularly red. However, piggy-backing my RGPs over top of the red soft ones is really tough on my eyes. I can’t wear them for more than a couple of hours before my eyes get so irritated that I have to take them out.
What low vision aids do you use such as video/CCTVs, reading eyewear, magnifiers, monocular, bioptic eyewear, etc?
Thus far, I have gotten by with larger size TVs and computer screens. I carry a small magnifying glass to read small print, if needed.
If I could ask for a visual aid that would really help me, it would be dark sunglasses with some sort of heads-up display projected onto one of the lenses that would show a magnified image of whatever’s in front of me. The bioptics available on the market today still seem a little clunky and require the wearer to manually slide a color filter in front of the lens.
What is your occupation and how is it affected by your achromatopsia.
I work in Information Technology. I believe career choices for achromats are somewhat limited. Most of what I need to see is on a computer screen. I use a 23” LCD Panel at work and usually limit the resolution to 1024x768 with larger font sizes. If I can’t read something, I just zoom in on the screen. Fortunately, there are few tasks within IT that require color vision.
What are your tips for living with achromatopsia?
Ask questions and continue to look for vision aids to help your particular situation. Educate your spouse, friends and family members about your vision limitations. I have found that people that begin to understand the conditions where I can see the best are very helpful with providing that environment for me whenever possible.
What advice would you give to others with achromatopsia?
I would recommend that parents should learn all they can about the characteristics of their child’s eyesight. Learn what will help your child maximize the vision they have. There have been a lot of technological advances that make vision aids more available and affordable. I don’t think my parents knew what questions to ask, had limited finances with access to limited solutions. Parents today should start their discovery process while their children are young.