Losing vision – I will walk a little slower, but run a little faster
I have been reflecting on what has been posted on this blog. There is much about perspective, successes in culture and challenges in culture towards disability as well. I have written about the feelings I experience when I run and what this has meant for others. Many powerful and important topics have been covered on this blog and in my outreach. On the other hand, I have neglected to write about something that is not only important, but inevitable to experience in my life and others who are in a similar situation as myself. That experience is the feeling of realizing when your vision has further dwindled… the feeling of knowing that something just happened that never would have happened in the past. The feeling of telling yourself it was just a random accident and that you were spacing out.
The feeling of going on and then having another experience similar to the first and you tell yourself that too was just a fluke, your skills are adapt and that day is just full of bad luck. The feeling of once again moving on and having something happen again and then your stomach sinks. The feeling of recognizing all of these small incidents as a much larger and collective event. I have hardly written about the feeling of going blind in real time.
My condition is degenerative and the truth is that I am going blind. Interestingly, as I lose more vision, it is more challenging to notice when my loss of vision progresses. I have not been able to read, see faces and do things of that nature for over 8 or 9 years. In some ways, those abilities became my benchmark, but as vision loss places you in different frames of finding benchmarks to keep measure of vision loss, you notice these variations less. To make this more tangible, if you were to lose 90% of something and then be left with only 10%, small losses of 0.01% would still be hard to recognize. In contrast, losing 3% of that final 10% is very profound. Losing a large piece of a small piece has great weight. Recently, I have lost a lot of weight.
In some ways, this realization is much like how you may experience weight loss. You have a pair of pants, or do some things, that are routine for you. Then one day, those pants, or that routine, feel a smidgen different. You do not pay much attention, tighten your belt and move on. Another day comes and your pantssimply fall of your hips. Even your belt can barely hold them up. For better or for worse, you hold your pants up with your hands and feel like things would have never gotten to this point. Well, I am holding my pants up, and am still measuring the distance from cloth to flesh with my digits and am taken back.
Because of several events, this realization has come to me over the last several days. An older gentleman who has my condition once wrote in an email to our mailing list and shared a pivotal moment he had with his vision loss. He had gone into his bathroom and noticed the light bulb was blown. He retrieved a new bulb and fixed it into the socket. He then went to turn the light switch on and saw no difference in light. It was not a matter of seeing pitch black in place of what was once there, for there was light coming in from the windows, but the light bulb made no difference. His vision loss had moved him towards simply taking in the little light and movement that he could see and experiencing it all as a large hue of light. I have noticed that in the right time of day, I can barely see the light bulb in my bathroom be turned on, for the light it radiates makes no real impact for me during the day. The bulb is on, but it has no reach. Obviously if it is night and I turn the bulb on, it has much more of an impact on me.
Several accidents have happened over the last several days, but one event was intentional. Much like the gentleman I mentioned above, I was in my bathroom. It is instinct for me to direct my eyes in a certain direction to utilize what remaining vision I have to perceive anything in front of or around me. Since my central vision has not been very strong, I will often scan directly in front of me as best as I can by using the minimal, or almost non-existant peripheral vision I have to do so. The outline and figure of my own body in my bathroom mirror is easy for me to see, especially when I am wearing a dark shirt, as te mirror reflects myself placed in front of a white wall. Remember, contrast is my friend.
Rather than letting myself gain a very vague visual of myself in the mirror by using my peripheral vision, as I now instinctively have over the last 8 years, I lifted my head from brushing my teeth, stepped back and looked directly into the mirror.
It was the white hue that I had heard stories about. It is very similar to looking at a horizon filled with mountain tops that are covered in snow, but have the smallest of dark rock rising thorugh the snow. So small, it looks like sprinkles of pepper on on white paper. My eyes could hardly take in the dark color of my shirt, but enough of the tone came through to make you believe that there is quite possibly another shade other than white in front of you. I took another step forward and it was the same. I brought my face to the mirror and I could then make out the dark color of the shirt I was wearing, as it was literally under my nose. I did not fail my test, I had passed it. I’ve lost a lot of vision lately.
More than any other feeling or emotion, I feel old. I did not slam my fist down, I did not kick over the trash can in my bathroom and I did not go open up a beer. I was certainly taken back, but was calm at the same time. I have written about my feelings on the natural challenge of having a disability and the created challenges for having a disability. For me, the process of going blind is just one of those natural challenges.
What is interesting is that this moment with the mirror is the first time I can recall over the last 10 years or so when I have looked directly into a mirror. Perhaps I have not done this because of what I knew I would gradually see over time. Or more appropriately, what I would gradually not see over time. The recent bumpbs, wrong turns and time with the mirror have spelt out something pretty large for me. I always know that I am going blind, but then there are those days and moments in life when you actually feel it. It feels like many things.
It is hard for me to put much more of this into words. Even my own hands can only empathize so much as I try to find a way to write about this. So what will I do? I will walk a little slower, but run a little faster.