Welcome to My Achromatopsia,
Upon typing the above introduction, my browser underlined the word Achromatopsia, signifying its misspelling. That pretty much sums up why I’m writing a blog, putting my thoughts, experiences and what I’ve learned out into the world. I believe there is a hole in the information, or sharing of actual real world application and learned techniques of someone with my condition.
A short introduction,
I have had Rod Monochromatism since birth (as is true with all cases). This is a specific term for a more common eye condition called Achromatopsia. It wasn’t until later in life I learned about the different types of Achromatopsia. This lack of knowledge of my condition or real world application of its side effects absolutely made things harder for me (and my parents) than they needed to be. There are simple, but practiced, techniques that can greatly improve the life of someone with my condition and I want to share those with you whether you are here because you have the same condition, or you know someone with Achromatopsia. Understanding what the Achromat can and can’t see is vital to understanding the different aspects of functioning within normal life.
I want to mention a few things right of the bat before I get into the actual differences in my vision and that of a non-achromat
My Parents (Mary and Rusty)
I mention above that having some real world knowledge of my condition may have helped myself and my parents at times. I want to clarify what I mean by that.
Achromatopsia is a frustrating condition to diagnose. The eyes look perfectly fine to the normal exam process as the cones are there but do not function. So getting a doctor to even take my parents claim seriously was almost impossible. My parents took me from eye doctor to eye doctor when I was very young, hoping one would finally diagnose the problem that was obviously wrong with me. I know we haven’t gotten into the actual condition yet, but the most important thing to know in this story is Achromats are EXTREMELY light sensitive. This means, without some covering or very dark glasses, I only see white light when I walk outside (and sometimes indoors). So, as a child my parents would see me track objects relatively well while inside, but the moment I was taken outside I would scream (as I was seeing bright, most likely painful light) and I would act completely blind. I ran into objects that were, to anyone else, very clearly visible. Upon seeing this type of behavior my parents started taking me to eye doctors to have it diagnosed. They would check my eyes with their equipment and proclaim “there is nothing wrong with him” to which my parents would respectfully reply “can we please take him outside and show you”. Looking back now, this seems completely logical and the ignorance of the doctors they visited is quite surprising. Instead of taking me outside and seeing the absolute blindness that would result they stated “I don’t need to take him outside, I can see very clearly that there is nothing wrong with his eyes”. It wasn’t until many visits later to many different doctors that my parents finally found someone that would take me outside and see the obvious problem. Upon doing this my condition was diagnosed and my parents, and ultimately me, were able to start understanding this condition.
If my parents would have not had the persistence to keep trying doctor after doctor, my condition would have been very difficult to describe at such a young age. This is a main motivation for sharing my experience, to help convey the information that may be truly helpful for a parent’s situation or an adult’s, looking for more information.
To round off this section about my parents I need to explain that they did absolutely incredible jobs of getting me anything I needed and not making me feel handicapped in any way. I have many experiences that will be written about in this blog so you will get a more detailed understanding of my relationship with them and their strength, but one interesting story comes to mind.
We didn’t have much money growing up. I don’t think there was anything wrong with that because I got to have my parents at home working side by side, but it puts in context the difficulty of this story.
I remember one time walking into the post office, I had just gotten a new pair of my special sunglasses that had leather flaps on the side to stop light from entering. I must have been pretty young as I remember looking up at my mom. Even back then I knew they were very expensive glasses and a strain on my parents financially, most likely costing over an entire week’s paycheck to buy. As my mom and I walked into the post office I tripped on a concrete parking divider, fell face first and broke those brand new glasses we had painstakingly purchased literally minutes before. I can’t imagine the strength it took to turn back around and find a way to get another pair, but for them there was no other option. I believe in this specific case, my Nanny (Grandmother, Mom’s side) paid for the second pair. Nanny was an incredible women who gave me subtle but concise guidance and will be discussed later. Laying on the ground I felt horrible, but this kind of thing happened often, as it was always difficult to see outside and my lack of depth perception really made certain obstacles troublesome.
This is one instance in countless where my parents gave everything they had to make me feel capable, comfortable and not handicapped in any way. I owe them a lot, they gave me a lot, and I am incredibly thankful for that. I will provide more stories about my parent’s struggle, triumphs, and learned knowledge through updates in this blog.
My wife Elisa
It took the absolute love and compassion of a completely dedicated partner to open up my mind to functioning on a new level. Conquering my condition in new and exciting ways.
I want to give you some background on the very important role my wife plays in the discovery of certain techniques that greatly helped me function freely with my condition. There will be dedicated articles to these techniques, my love for her, our accomplishments and our adventures. For now I’d like to talk about the amazing connection we have,
Our origins are complex and simple, and beautiful in every aspect. Our lives are intertwined, our story is something rare, beautiful and complete, but that is something for another time. For now I want to stress this point specifically. From first real contact, from our first real conversation we were uncontrollably interested in one another and from our first embrace we were madly, unequivocally and absolutely in love. We have grown this love into something I never knew existed. An absolute partnership, something every single Achromat truly wants, something anyone wants. Elisa has shown me compassion and understanding with incredible depth. She has faced each unique condition with grace and open minded positiveness. We spend every moment together, we have cultivated a business where we can work side by side together on projects that bring us happiness. We do yoga each morning while breathing in sync, we cook, shower, drive to work (as Achromats cannot drive), create, shop, plan, and enjoy everything we can together. This has allowed me to understand a completely new and beautiful trust. One that allowed me to perfect a technique that inspired the creation of this blog. This love we’ve made is truly unique, stunningly beautiful and everything I have ever wanted.
Now that you understand that we are bound at the hip in the best way possible, this next bit will make sense.
My entire life, since the actual discovery of my condition, I have worn very dark sunglasses outside and inside (the ones with the flaps I mentioned above). This drew attention in unwanted ways. I could not function without dark glasses as the bright light outdoors, and most times indoors, made me squint to minimize over exposure, not track objects well and mostly have little to no vision. Once my wife entered the picture and as we grew our intense connection and transitioned our life into the beautiful entanglement we now have, I was able to transition out of wearing my dark glasses. I could take her hand, shoulder or arm, and be almost lead through the bright parts of any situation. This sounds weird at first I’m sure, but not in conjunction with what I will explain next. Having this safety net of knowing my partner will advise me of obstacles via nudges, gentle words and soft hand lifts, allowed me to start walking around outside without my dark glasses. This enabled me to practice my snapshot technique….
Not wearing my glasses outside, walking hand in hand with my wife, and being told when steps were approaching, when a dip would occur or what other obstacles should be avoided let me explore a technique I had discovered by accident as a child. What I now refer to as “Snapshots”.
The breakdown of this is a trained blinking process that, with practice, allows me to see relatively clear, still images in rapid succession. Using this technique I can even see quite well on the brightest day at the beach (something every Achromat knows is one of the worst places you can be). Using this technique I can take small snapshots of my surroundings with more detail than if I were even wearing the darkest of glasses. Her love and partnership allowed me to hone this technique and explore being outside completely blind but comfortable. This is something I never imagined I would be able to experience.
I will cover this technique in much greater detail, but the point of this section is to understand that I could not have discovered this technique without her. I would not feel the absolute comfort I have found in a loving, dedicated and extremely special partner. Elisa has been a true blessing, a life changing deeply felt beauty of connection and I am thankful for her every moment I live.
My understanding of my condition
I want to discuss my complete lack of knowledge of my condition past my own experiences and how, if you follow along, we will learn more about the condition through research, shared conversations and Q&A together.
I have no formal knowledge or training with any medical practice. Quite honestly, my knowledge of my own condition in any form of scientific terms is extremely limited. I would like to learn more and I know that creating this blog will give me an avenue to explore the topic, learn interesting facts and advances, and hopefully others stories about the condition. My goal is to share my knowledge of experience, through my own words, to try to help others better understand what they themselves are going through, or what a loved one might be feeling.
My knowledge of the condition is limited to the minimal research I have completed throughout the years, information passed down from my parents, who took an interest in the topic, and different literature I have read. I have little to no real knowledge about it and the advances that have been made (if any). That’s what makes it so weird, I have a condition that effects me in almost every moment of the day. It inhibits my ability to travel, feel safe or comfortable in a lot of common situations and see color, yet I know almost nothing about it.
I plan to change that, learn more, and share it with you. Hopefully if more information is more readily available it will be a lot easier for others like me to discover and share. I am 31 years old now and have just recently discovered the “Snapshot” technique. What other coping mechanisms could others have discovered that I don’t know about?
What is Achromatopsia and Rod Monochromatism
Let me start with my very basic understanding of Rod Monochromatism and Achromaptosia. Vision is based on two main inner eye workings. Your rods are used for low light vision (night), have far less detail and only see in Black and White. While your cones see in full color and see far greater detail. The cones are used for normal vision where large amounts of light enters the eye. For Rod Achromatics the cones and rods are both present, but the cones do not function. Meaning that during the day, when you use your cones to see, I am using my rods.
That’s why the main side effects of the condition (for me) are..
Light Sensitivity (The rods of the eye are not made for daytime, high light use):
When I walk outside without very dark sunglasses on I see absolute white light. No contrast, no shapes, no outlines, just pure white light. It’s sometimes painful and it is always overwhelming. Even with the darkest glasses my eyes are straining. I am using the part of my eyes you only use in the lowest of light to see the entire spectrum of the sun’s overwhelming force. Plus I live in Florida, the Sunshine State. It’s like shining a million flashlights directly into your eyes in every direction. It brings visibility to absolute zero outside, and lowers it significantly in any well lit indoor situation.I will talk more about this in future blogs with visual representations.
Complete Colorblindness (the cones see color, without functioning cones the eyes are limited to the rod’s black and white information);
This is one of the weirdest parts for people to comprehend. A lot of the population already knows about red/green colorblindness. The condition is very common, so most jump to the conclusion that they are similar. Unlike that condition I see absolutely no color. I have never seen a single color. I do not dream in color. I have no real visual concept of what a color could be. In other words I have no understanding of it. Everything for me is a very simple scale from light to dark. I can very easily tell you, being shown visual representation, that a blue shade is darker than a white shade, but even in that comparison I would have no clue what color the dark shade could be. Furthermore, there is no distinction between colors that are anywhere close in shade at all. I see things in a more rudimentary way of dark to light, a very simple but subtle gradient.
An interesting way to think of it is this. Imagine You paint 256 strips of different colors on a large canvas, white to black, left to right. You can clearly see lines where each color ends and the next begins. Your brain can name a lot of the colors or at least categorize them into general blocks of color. You are pulling hundreds of pieces of data from these rows of colors. You are reading its contents in your brain using the color names. You are feeling emotions those colors give you on a subtle level. You are calculating and understanding the clear distinctions between the colors placements. Now imagine you take a soft sponge and gently smear the entire canvas from light to dark. Just enough to show no more distinctions in the lines. No one color could be identified without running into the next. Now you take a black and white photo of the canvas. You now have a light to dark gradient, with no color and no clear distinction of where one color might have turned into another. The concept of the rules color impose are gone. Even the lightest thing you see on the canvas can’t be considered white because its contents are mixed and varied, its only whiter (lighter) than the rest of the canvas.
Now let’s compare. Think about all that structured data you get when viewing the canvas in color. There are emotions connected to each and every aspect of that canvas, even if they are only slight. There is classification, clarity, and order. Now remember that smeared black and white photo. There is no ability to classify any of it. There is no one distinct color anywhere. Every piece of that gradient is inexplicable without drawing a comparison to another part of the canvas. There is only one key property. The comparison terms of “lighter” or “darker”.
So its not only that Rod Achromats do not see color, we do not see the same distinctions between even the shades that you see. You get so much data from colors and how they interact with each other. My pallet is a continuous roll from light to dark that cannot be described in any repeatable way.
I do want you to understand that I do not dislike my condition, I enjoy my absolute unique perspective and celebrate its rarity. Think of your detailed painting, all its data, all its attachments, all the processes your brain undertakes when seeing it. Now Think about mine. It’s a blank slate, it’s more complex than my brain can understand, it’s what ever I want it to be, it’s beauty every time, it’s different every time, there is no way to classify any of it. Both your original canvas and my smudged black and white are beautiful in their own way.
Blurry Vision / Near Sighted = No Driving (without the cones functioning my brain only receives half the data it should. Like a monitor with half the pixels missing)
This part is also a little tricky to grasp and is a new understanding I only achieved. Without the cones my eyes only receive half the data. More specifically the center of the data is missing. Imagine taking the screen you are viewing now and removing half the pixels from the center of the screen. When you look at images on this new screen you will only have the data of the outside of the pixels, now imagine your computer tried to fill those black spaces with what it imagined should be there. The result would be blurry and limited filler. This is what my brain does, it doesn’t let me see the missing data, it tries to fill it all in. This is something your brain does too, just for different reasons. I will discuss that more in other blogs.
This lack of data, these missing pixels, this incomplete picture, makes for a blur and extreme loss of detail. It’s nearsightedness in the traditional way and in a different (data input driven) way. My vision is very poor at any distance past a foot or so, at that point it’s all shapes and contrast. There is all the missing data of the pixels (cones) and all the missing data of the colors. All the things you use to identify your surroundings. It’s blurriness in a way I don’t think most people understand (as I can barely even put it into words).
This is the hardest part of my vision in the real world as it makes it hard to see anything at any real distance. Trying to cross a street can be easy or difficult, completely dependent on the surroundings. Let’s say there is forest on both sides. For me a forest is a huge mesh of dark, almost limitless pattern with no definition. If a dark shaded car was approaching it would be very difficult to see. Whereas, if a light shaded car were passing it would stick out via contrast.
Movement is a very crucial part to my vision. I think because I have such limited data my brain has to use other cues to figure out what it is seeing. I need movement to identify an object (I’m a T-Rex). So things that are moving give my brain much more information than something that stands still. If half the pixels from that monitor are missing, my brain isn’t worried about figuring out how to show me the pattern that might be in between the pixels. It instead produces blur.
As I sit at this desk and look around I understand that the things around me show up as just shapes, with no color data and a lack of detail they could be any substance. That jar could be a jar, or it could be a medicine bottle, or a bag of pebbles. It could be glass, plastic, or made of rice. I would have no idea. Unless I touch it.
Lazy Eye = Lack of Depth Perception (Although this is not caused by the cones, I’m sure the lack of data contributes to the severity of the lazy eyes effect)
The last thing I want to talk about is my lazy eye. It is a whole long story that we will get into another time. Know that I have a slight lazy eye, this means my right eye does not look at the same thing my left eye does. My right eye’s vision is much poorer than my left eye’s. So my brain only uses the left one. I think I use the right one to collect data, and very little data at that. As I sit here and type this, my left eye is watching the text type. My right eye can see that Elisa is sitting about 3 feet away. The data my right eye is collecting would be completely useless, if I did not know what I was looking at first. It’s very large blocks of dark and light shades, only really catching movement. My brain is putting very little effort into understanding what that eye is seeing.
When I was younger, doctors were very concerned my right eye would shut down and they made my parents patch my better eye. I do understand why. I can see that the data it’s collecting and feeding my brain is very minimal, but for some reason my brain has kept it on and functioning.
One thing that I find interesting in this eye is that I can control it separately. I can look at one point and then switch which eye I look at it with. switching my point of view to a few inches left or right. When I am using my left eye, I have no control over what my right does, when I tell my brain to switch to the right eye, I have no control of the left.
I have trained myself to switch to my right eye sometimes just to make sure it’s still staying fit, this may have contributed to my keeping some vision in it. This also would have been a much better exercise to help my vision when I was younger. Instead the doctor had me wear a patch on my good eye. Functioning with only my weaker eye was incredibly difficult, my brain had no idea how to interpret that data correctly.
The other big part of the lazy eye, and only using one eye to see, is the lack of Depth Perception. Without two streams of data my brain has no idea how far away objects are. Your brain uses your two eyes in sync, focused on one point, to understand the distance of any object. Only using one stream flattens the image and makes it impossible to understand the depth that an object can have. Because of this I have learned not to trust my eyes for distance. I use my feet or hands to judge the distance of objects. This is fine for understanding the depth of a curb or distance to a railing but it makes grabbing a specific point (like a receipt from a cashiers hand) incredibly difficult and awkward. Also, if something is falling and I need to catch it, I will close my eyes. My muscle memory and perception of what is happening is far better than my brain’s ability to interpret the 3d space and physics of the fall. This is something that took me a long time to understand and use.
There are many other side effects like shaking of the eyes (Nystagmus), sensitivities, balance issues, and many other things that come from the mix of each of these stated effects. I believe every Achromat has a different set of obstacles to conquer, which can probably be said of all of us.
I have a lot more to say on every topic I’ve covered here. I have techniques to teach, experiences to share, understandings that can be helpful. I wasn’t sure how this would pan out, talking about something that is so incredibly specific and hard to put into words, but as I notice I am currently breaking the 4,000 word count in this article, maybe this is a good start.
I would once again like to thank my parents for their amazing support, understanding and caring as I grew. I would also like to extend the love of my heart to my wife Elisa. Without her I would not have gotten out of my house, out of my head, and into a world that I CAN function in. You have saved me in every way.
Now for you…
Thank you for reading this article, I hope something in it helped you understand your own condition or a loved one that has Acrhomatopsia. I will update this blog with more information, please feel free to bookmark it and share it. Leave a comment, ask a question on any article about any experience as an Achromat or clarification of any specific points. Maybe your child was just diagnosed with Achromatopsia and you have no idea what that means, ask away. Maybe you’ve discovered a new coping technique, please share. Or maybe you know of some interesting new data about our condition, please send me in that direction.