Did you know blindness is the “ailment” people fear most? That’s not my choice of word. It comes from the results of a 2017 study conducted by the Wilmer Eye Institute–which found that people fear blindness more than AIDS, cancer, and Alzheimer’s disease. People fear losing their sight more than losing speech, hearing, or a limb.
I had no idea I had the distinct privilege of walking around facing the condition most Americans fear most. That should somehow make me feel heroic, getting out of bed and conquering the world despite battling this cringe-worthy enemy, and yet, as I appear to be losing what’s left of my sight, the only thing I feel is sadness.
If you are sighted and cannot immediately relate to this blog post, hang with me for a moment. Blindness might feel like a very specific situation, but I can see many ways you could substitute it for some other challenge in your life that feels insurmountable.
What is Low Vision Anyway?
The trouble with living with low vision is that people assume you are totally blind. It’s hard enough trying to describe what you’re able to see when you’re considered a “high partial,” or someone who can see well enough to get by without a travel or reading aid but not well enough to drive, at least not legally.
Imagine living at the deep end of the low vision spectrum. Should we call this low partial? That almost sounds like a dystopian novel. Trying to describe differences in what you can see depending on the lighting, the shade of color, and contrast gets irksome. It’s easier just to call myself blind and leave it at that. If you need a white cane, you must be totally blind, right? And if you need a guide dog … fuhgeddaboudit!
During my high school years, I think it caught teachers off guard when they realized I could still make out facial features. It’s almost as though you had to fall into one of two camps, those who could see and those who could not, and you wonder why there are low vision people walking among us who feel as though they do not belong either among the blind or the sighted.
Sight is so widely treasured that even among the blindness community there is a hierarchy. Legally, we’re all blind. Perhaps that’s one reason why consumer groups like the National Federation of the Blind find it more empowering and equalizing to label it all blind, but on a day-to-day basis, we’re disregarding reality if we deny the difference between those who can see a little more, a little less, and nothing at all.
I wrote a blog post in 2013 speaking to some of the similar gloom I’ve been feeling recently. It was likely then that I was beginning to notice the next distinguishable phase in my sight decline. Glaucoma, at least in my case, has felt like descending a series of wide steps, each step marked by a noticeable deterioration in functional sight.
I think I wrote that blog post as a way to console myself, something to boost my own spirit, create a sort of personal philosophy I could lean on when things felt shaky.
What follows is the text of that post. I’m going to restrain myself from doing any editing for the sake of keeping the account authentic, but my goodness, sometimes I want to retroactively backhand my inner writer.
Before the Black: Dealing with Impending Blindness
What’s worse, to be born without any sight or to grow up seeing and realize soon you will not be able to? Blindness is a complex animal, because there are varying stages of “legal blindness.” There are a number of medical conditions that can result in loss of sight, but no matter the cause, I have embraced the idea that blindness in any form does not have to spell the end of a person’s usefulness. But, of course: Beliefs aren’t really convictions until they are sincerely tested, right?
Memories of what I could once see bring a degree of comfort. I remember what it was like to be able to sit in the back of a classroom and make out the writing on a blackboard. I remember the distinct color of the balls against the green felt of a pool table, and as mundane as it may sound, there was something empowering about reading a license plate from down the street. This was second only to the ability to jump on my bike and take that street as fast as my feet could peddle.
Ironically, it was a biking accident at the neighborhood park that finally got through to my adolescent mind that something was wrong with my eyes.
Over time the situation became more complicated. Visits to the optometrist led to appointments with the ophthalmologist, and regular eye exams turned into regular surgical procedures. The once vivid blues, greens, and reds of the world around me slowly faded into something lackluster.
My senior year in high school, after many failed attempts to stay on top of the glaucoma, a procedure was performed that has more or less kept things in check for the past twelve years. The headaches went away. My field of vision stabilized. My sight was worse off than it had ever been, but at least I could rest easy that a routine eye exam would not result in my going in for yet another surgery.
I’ve never really gotten the hang of explaining visual acuity. How do you explain to someone the ability to note that someone is sitting next to you but not the ability to distinguish facial expressions? I transitioned into my teens with teachers who assumed my eye reports meant I may as well be completely blind. I met and hung out with friends who made the same assumptions because of my efficient use of first the white cane and later a guide dog. I believe this may be true of my own family, and so how do you begin to explain the loss of something the people around you thought had disappeared a long time ago?
Every little bit counts. In the sunlight it is still possible for me to make out some facial features. Others may not get it, but I appreciate the value of using the sun’s reflection off the metal grate to find the escalators to the subway station near my office. Others may not understand, but I enjoy the ability to look for the rectangle of light in the otherwise dim station to find the entrance to the train. I use the contrast of the grass and sidewalk to keep myself in a straight line, and the contrast of colors against that sidewalk makes it possible for me to walk around people instead of into them. I still flip on lights to distinguish between my light gray suit and the charcoal. These are examples of what I can still see, and they are stark reminders of what I now find myself slowly losing.
Have I relied too much on my sight? I don’t know. I’ve used my sight to the extent I am capable, but since I have not been able to read print in years, I haven’t exactly been straining my eyes. I’ve used what is available to me and put the rest on my ears, nose and hands to work out. It seems foolish to me not to utilize what you still possess to navigate unfamiliar environments–provided you never put too much dependence on any one of your five senses.
So, what the heck’s the point of this latest rant?
Maybe it’s a green light for someone in a similar situation to allow themselves to feel bummed about losing the ability to see. I don’t have a lot of sight left, but yes, it makes me sad to think it is only a matter of time before this too goes away. Knowing and appreciating the simple concept of color is something for which I am blessed to have experienced firsthand.
Maybe it’s a reminder to myself that despite occasional reports of new surgeries and medical advances, I could never gamble away what I have held onto for so long. In my case the point is moot, because my remaining eye has undergone so much damage from past surgeries that emerging treatments would likely make my condition worse.
Or, maybe, it’s a reminder that despite the gloom, things really do turn out alright. It has not been lost on me that my life would have turned out dramatically different if I had never acquired a visual impairment. A gift? I’m probably too cynical to call blindness a gift, but if gifts are measured by the value of people and experiences, then yes, I reckon it’s one of the best gifts I’ve ever received.
As to how you deal with the unavoidable, I think you have to keep challenging yourself. List the things that make blindness scary, and break them up into tasks that erode the unknown.
Just the other day I went and found a McDonald’s I knew to be near my office. It would be easy to rely on the cafeteria in my building because it’s convenient, because it’s familiar, and maybe because it is safe. I successfully found the restaurant. Once inside I wandered around a bit but eventually found the counter without assistance. If I go again, perhaps I will learn the order of the drinks at the soda fountains. I should probably figure out where the trash goes in case I ever decide to eat there instead of just picking up. These are exercises you force yourself to tackle as a matter of course, but they are especially important when you need to overcome change.
What this post is not is a cry for pity. I can afford to feel sad because no one will experience the change as keenly as me. I think it’s healthy to mourn the persistent loss of a physical ability. I would make a horrible therapist on account of my no nonsense approach to overcoming challenges, but even a no BS character like me can now recognize the value of taking a moment to reflect before jumping to the point of bucking up. Sighted people wonder why I would be impacted by something I have not fully enjoyed in years. Blind people would likely feel motivated to point out I can do anything if I set my mind to it. I am content to know what I had, what I still possess and what I might use moving forward.
I think about the victims from the Boston Marathon who are dealing with the loss of a limb. Life will change in small and large ways. It’s really going to suck for a while, but after a healthy period of mourning, you have to reacquaint yourself with the reality that you control the circumstance, not the other way around.
Ten Years Later
I have since taken another significant step toward total blindness. When I leave a building and walk into sunlight, it takes longer for my sight to adjust. Even after it’s adjusted, I find it harder to visually follow the contrast between sidewalk and grass. Sometimes, while sitting in my cubicle, I look around and wonder why the overhead fluorescents have been turned down and belatedly realize the lights never changed.
It’s possible the deterioration has been happening for some time. I lost Matthew, my second Seeing Eye dog, this past June. Relying on a dog to take the lead on navigation, I guess you could say I became a little complacent. There’s no need to rely on visual cues to walk around light polls and electric scooters. In the weeks after Matthew was gone, my white cane discovered a whole new world of printers, shredders, trash cans, and tables I never knew existed on my way from the hall to my work station. Somewhere, I can almost hear Matthew chuckling: “Stupid human.”
What I am likely to miss most about losing the rest of my sight is color. If you’re sighted, you likely take colors for granted. Once, in the aftermath of one of my more major surgeries, the doctor removed the eye patch, and the explosion of vivid color was stunning. I can’t explain to you how the transformation of a basic pair of blue jeans from a lackluster hue to an aggressive shade totally rocked my adolescent world. Forget counting fingers. I could see my doctor’s satisfied smile.
Of course, the thrill was short-lived. My stepmother would blame my father for not doing enough to let me recover from the surgery, but I believe enough in destiny to suspect my blindness was always meant to be.
Optimism Still Abounds
In some ways, the mental game I played with myself worked. Rereading that post from 2013 reminded me that as difficult as things felt back then, and as more challenging is things feel now, I am still blessed to be alive and generally healthy. Things really could be worse.
Can you imagine being deaf? The thought of not being able to enjoy the dulcet tones of music makes me squirm.
Or, can you imagine not being able to walk? My brain quickly jumps to the myriad of elevators out of order or building entrances lacking ramps.
And yet I suspect people in those communities would likely look on me with pity and count themselves fortunate they do not have to face the possibility of impending blindness. You see? It’s all a matter of perspective.
It needs to be okay to mourn the loss of a vital ability. It needs to be okay for that grief to occasionally resurface, and it needs to be okay to sit in that pain for a minute. As confident as I am, I still experience the occasional wave of loss when I can’t just pack my family into a car and drive somewhere. I read about all the new camera features on the latest iPhones and amuse myself with fantasies of what life would be like if I could fit my skull with some of those sophisticated cameras!
Eventually, it also needs to be okay to pick up and move on. The human spirit has a remarkable knack for resilience, but you’re going to find it hard to tap into those ample reserves if you get swallowed by negativity or surround yourself with people who do more to keep the void wide open than they do to nudge you forward.
We should all be moving forward. Maybe, if we allow ourselves the grace to vent about how much life can be too damn challenging sometimes, moving forward will come a little more naturally. Somebody somewhere will have helpful suggestions on how to make it a little less challenging.
I’d be curious to hear what you think?