3: The Way My Eyes See the World, Part 2

Nolan here with the follow-up to my previous post. This part is about my personal experiences and thoughts about being legally blind. As I stated before, nothing I write here is meant to garner sympathy. I do not want that, nor should anyone with a similar condition. All I ask is that you take what I write as a glimpse into a life that has made me into the person I am today.

Early Life

For the first five years of my life, I did not know that anything was really wrong with me. I was afraid of the dark, constantly got black eyes from running into things, and did not understand why people acted so differently around me.

I was aware that my parents had their suspicions that something might be wrong with me, but to the best of my memory they never made their concerns obvious to me; it was more like something almost tangible that I could feel but at the same time did not truly understand.

I was relatively quiet when I was a kid and that has not changed for the most part through my adult life, and when you are silent you notice that the people around you like to fill in the silence with talking. In my experience adults for the most part do not give little kids credit for understanding what they are talking about, but adults are always surprised what kids tend to understand.

After what felt like a year of tests that involved plenty of bright lights being shined in my eyes, and a rather unnerving experience of what the Eye Doctors referred to as a large proporid camera that would take pictures of my retina. (The retina photos consisted of those eyedrops that num your eyeballs before they placed tiny wires directly on my eyes, and taped what looked to me like the empty plastic things that McNugets dipping sauce came in over my eyes.) My parents finally got the answers they were looking for; they just were not aware that I was listening as well.

At that time the words Retinitis Pigmentosa were not what I remembered. I only remember the doctor speaking to my parents. I did not understand the term legally blind, but my six-year-old mind did know the word blind.

I do not have any children, but I realize that being a parent is not the easiest responsibility in the world. To me, it is one of the most rewarding and painful things a person can do, but I say the same thing about writing. That being said, I have never envied my parents’ responsibility when they came into my room one of those nights after the eye doctor’s visit, they found my six-year-old self crying in the dark with only a nightlight providing very little light. Between the bouts of tears, I told them what was wrong. After I told them what the problem was, they knew that I paid attention more than they thought.

So, what do you tell a child who is scared of going blind? Take a minute for that question to sink in, and contemplate how you would respond. Even now, I have no clue how to answer that question. My parents were obviously under pressure with this one, and I do not harbor any resentment or blame for the lie they told my younger self.

Starting school was something that was different for me. I had a desk lamp and extremely thick glasses to aid me in the early years of my education. I cannot remember when I stopped wearing my glasses, but I can tell you that part of the reason as to why I stopped wearing them was the fact that I had a peddle car shaped like a truck that I used to run over my glasses. I intended to run over them while going backward, but I am not sure if I ever managed it.

When I think back on Kindergarten, I only remember a few things. The memory that stood out the most is something that my dad told me. We were in the garage, he was showing me his coin collection that he kept in there when he said, “I want you to tell people that every time you get a black eye, your dad gives you a silver dollar.” Keep in mind that as a kid I had a tendency to bump into a lot of things that resulted in me getting a black eye or two.

This was my dad’s way of controlling the narrative so to speak, he care how it sounded just that people knew I got a silver dollar for every black eye. At the time I really did not think that much about it, and I told my classmates what my dad had promised me. No one ever made fun of me and my black eyes, but if I remember right, I stopped telling classmates what my dad said after my mom heard what I was telling them.

For the sake of not making this post as long as it could be, I am going to sum up first through eighth grade. During these years I did what you would expect, I was just another kid in grade school. I will admit to being a bit isolated to a certain extent. This was due to that desk lamp being replaced by a CCTV.

This CCTV was a useful tech, it allowed me to magnify the books and worksheets as well as see what I was writing. The problem was that this device was big. Think of a CRT monitor with a non-digital camera and non-LED lights mounted beneath it; this heavy setup was held up with a few metal bars with a tray for whatever I was trying to see to be placed. As I said useful yet bulky, and ultimately something that cut off any connection with most but not all classmates.

I think it was after my first year of high school that the bulky CCTV was replaced with a device that fit in a laptop bag. This helped with some of the social isolation, but as you may or may not know high school is not an easy place for anyone who does not fall into the quote-unquote social norms.

Yes, I had friends and I was in different activities (I even was in the running for homecoming king in my senior year, but that is another story), but teenagers have this tendency to think that if someone cannot see you, they cannot hear what you say about them. While these unenlightened comments were not a constant thing, it was frequent enough to be annoying.

High school was a theory blende mixture of good times and bad for me. Aside from the things I have already mentioned there is only one other thing that needs to be mentioned. When I was a joiner, I learned the truth of the lie my parents had told me.

In my defense, it was 1999, and we had dial-up internet on one family computer. On top of that fact, said computer did not have any assistive technology installed on it. Things were not as simple for me to do any research like I can now.

Typically, Retinitis Pigmentosa does not start to present symptoms until a person is in their teens, and if search the internet, I am sure you will find videos of teenagers reacting to their diagnosis. I mention this because even though I got my diagnosis when I was six, the details were disclosed to me at the age of seventeen.

Honestly, when the facts regarding my impending future were all layout, I do not react in the way that most of the teens in those videos you might have found did. I did not like the fact that I would eventually become fully blind or close enough to it that the difference is philosophical at best, but it was not like deep down I did not know the truth already.

That eleven-year-old lie and all the little things that hinted at a reality that I was more or less willfully being blind toward all rearranged themselves into something that was more than the ever-yielding always comfortable and somewhat dependable speculation that accustomed to. This change instantly gave me a solid foundation to stand upon.

My response was, “Okay, now I know.” My words did not come from a place of maturity or anything like that, it was more of a response given while being distracted as I examined this new foundation. I could see that there was no cushion of any kind if I happened to fall, but this solid foundation of reality made possible by the truth of my situation was something that I could defiantly build upon.

I thanked the person who told me the truth. I am not sure if I ever really showed enough appreciation for what that person did for me that day. I did not magickly become a new person, but it was what I considered the beginning of my adult life.

Adulthood

Being an adult who is legally blind is not that much different from being a kid who is legally blind. The major difference is that dealing with the complications of your life is all on you. Yes, it is the same as simply being an adult.

Of course, there are organizations out there to teach a form of independence, but the reality is that being legally blind, completely blind, or any other impairment for that matter as an adult it is all on the individual.

In life, everyone ends up depending on others for things. This is a constant truth that applies to everyone regardless of wealth, station, or belief. If you are opposed to this statement, I would ask that you to examine the statement objectively.

How you live when you are visually impaired is all on you. I have heard the debates about using a cane or guide animal, and I have been in situations that would make my Orientation and Mobility teachers shake their heads in disappointment at the very least. I mention this because I think that being informed is part of the way you understand things, so when I tell you that I do not use a cane or a guide animal, you know that the choice I made is truly all on me.

I made the choice to depend on what is called Sited Guide. This is when a person who can see helps you navigate your soundings. Some people who are visually impaired and reading this are more than likely having a WTF moment right now, just give me a chance to explain.

When you use a cane or a guide animal, you are putting a large amount of trust in that method of getting around. As cynical as I can be at times, I made a fully aware decondition years ago to place my trust in people.

Friends and family have never really asked me about this, and I have never spoken or written about it before, but I place my trust in people because it ultimately shows you how human you really are.

Now, has my trust in someone else to lead me around ever led to coalitions, bumps, scratches, and aquand moments? Yes, it has, but that is beside the point. As much as I do not enjoy running into objects or people for that matter, I think that placing your trust in another person puts you as well as the person guiding you in a different light that falls into the whole black light thing I mentioned in my first post.

I have to first explain that the Sited Guide Teknik always has to do with physical touch. This is traditionally done by the person who is being guided placing their hand just above the elbow of the person who is guiding them. In my experience, this method tends to change depending on the person who is guiding you. I have to mention that I am secretly entertained when that casual acquaintance or stranger applies a death grip to your wrist and drags you to where you are going.

Let me get back on topic by saying that the physical contact involved in Sited Guide is there to allow the person being guided to feel the movements of their guide so that they can react accordingly. My whole thing is that I notice more than that; I can discern their attitude, style, and more importantly, an incite as to how the rest of the world views them. In short, I learn about the person who is helping me get around.

This experience is not one-sided, I think they learn something about me in return; if not by touch than by conversation. Most people especially those new to helping someone get around start off nervous; this changes over the time of our walk because there is one thing people do when they are nervous, and that is to fill the aquand silence with words.

In the end, they turn out okay or at least relieved that this particular task is over, and it does not bother me whichever way they feel. We learned from each other just by interacting with one another.

I am fully aware that there are plenty of arguments that can destroy my reasoning, and that placing something as valuable as my trust with another person may not seem worth it when all I am getting is an idea of who that person is. All I can say is so what. I value what I get in return for taking an assumed risk because I learn from it each and every time.

I have to admit that looking back at moments in my life that really defined my own limitations as far as my vision is concerned was not an easy thing to do. I will also admit to not including memories; the reason being that they would make this post more of a list of complaints that I have learned how to overcome or at the very least deal with.

Being legally blind is not easy or hard, it is more like not having enough money when it is time to pay your bills; not the most ideal situation, but you manage your way through it. Always keep in mind that I am a person who prefers things with a lot of contrast, my world is dark, but that just makes me appreciate the things in it that shine. Until next time, I am Nolan Ex Tenebris.