blindprof

[blindprof]

It’s Complicated

When people first hear me say that I am blind or severely visually impaired (B/VI), the most common reaction is surprise…followed by sympathy…followed most often by awkward silence. This is totally understandable. Unless you are regularly interacting with differently abled people, disabilities are uncomfortable. I feel uncomfortable and awkward around people who live with other forms of disability.

Heck, I’m still awkward around other people who are B/VI. And even this is understandable. Because each person is unique. Each manifestation of visual impairment is unique. Each path to and with B/VI is unique. Each person has unique life experiences, coping mechanisms, support networks, etc. We are all strangers in a strange land. I’ll have other posts dedicated to the whack-a-doo personal and social psychology of B/VI. For now, the focus remains on the physical, or rather the perceptual.

The second reaction is usually a question: “How bad is it” or “What do you see?” And my answer is “It’s complicated.”

In my first post, I laid out some more technical details: I have a visual field that is less that 10 degrees, night blindness, color blindness, uncorrectable myopia, light sensitivity, etc. But it’s not apparent how these details really affect what I see and how that impacts what I can do. This post will go into greater detail into what and how I see. Later posts will focus on how I (try to, with varying levels of success, stupidity, and hilarity) cope with these limitations.

It probably makes sense to start with my visual field, as this is the aspect of my vision that “qualifies” me as legally blind. However, before getting to that, we really need a basic understanding of how humans see. Don’t worry, I’ll keep it short and simple.

It may be easiest to compare the eye to a modern digital camera. A camera lens gathers and focuses light; it also constrains the amount of light passing through by altering the size of a mechanical aperture. In the human eye, these functions are performed by the lens and the pupil, respectively. In a digital camera, the lens focus light onto a CCD or CMOS sensor, which is a dense grid of light sensitive “pixels,” each generating a small electrical charge proportional to how much light (within a certain wavelength) is hitting it. The human retina is the biological, electrochemical equivalent. Finally, a digital camera has wires that transport these electrical signals to a computer, which then interprets the signals to create a digital image. Here, the human analogues are the optic nerve and the visual cortex within the brain.

As I noted in my first post, I have Retinitis Pigmentosa (RP), which primarily impacts my retina. Due to the wonders of genetics and epigenetics, other parts are impacted. But for now, I’ll focus on the retina. Characteristically, people with RP find that their retinal “pixels”—millions of light-sensitive “rod” and “cone” structures, as well as protective retinal pigment epithelial (RPE) cells from which the disease gets its name—stop functioning from the outside in. We don’t know the exact cause, nor is there yet any proven way to slow, much less reverse the process.

Of course, this is a biological process that is unique to each individual. For me, it has progressed relatively slowly from childhood. I can recall early symptoms as far back as age 6. I’ll have a separate post at some point talking about progression. But it is notable the process is neither steady nor predictable. I’ll have periods of relative stability followed by periods of perceptible loss. It’s rarely like a light switch, but rather more like a dimmer. Each area of loss will appear darker with less usable information until it is just “clicked off” by the brain, presumably redirecting its limited processing resources to doing something other than trying to interpret shotty data from dying cells. For me, the progression has also been very spotty—for example, I retained some usable vision in the extremes of my left-right periphery until just a couple years ago, despite progressively losing most of my peripheral vision between there and my center.

The result today is that I have very little of my retina remaining that pretends to function “normally.” I can detect very high contrast light vs. dark in some of my periphery, but nothing there that you would qualify as usable sight. My central vision is still somewhat functional, but has been fading rapidly of late. As I said, it’s spotty, but on average in good light I have maybe 10-15 degrees total horizontal vision and less than 10 vertical. And much of that is probably equivalent to what most would consider to be peripheral vision. To help better “feel” what this means, here are a few examples of how this manifests itself in my day-to-day life.

When I’m sitting across a table from you, I can see your face but not your hands. If I’m not socially distant, I might be able to see your eyes or your mouth, but not both at the same time. I often creep people out during a conversation because I’m constantly losing eye contact and moving my eyes to different parts of their body. I promise, I’m not “undressing you with my eyes”—people talk with their entire bodies, and I’m simply trying to catch as many visual cues as possible.

When watching TV from 10 feet away, I can “see” my entire 55-inch screen. But less than a quarter of that is in my central vision. I have to move my eyes to see detail or read signs or captions. Sports and fast action scenes are difficult to catch. A fast action, dark scene with subtitles…oy…the Battle of Winterfell may as well have been a BBC Radio broadcast.

I can read, though usually only slowly and for short periods, especially if it is paper and ink. I see only a few words at a time, so my eyes have to constantly move. This causes a lot of eye strain, and I have trouble keeping both eyes properly oriented and occasionally have periods where one eye twitches uncontrollably—obviously I’m channeling my inner Mad-Eye Moody.

And of course, navigating unfamiliar or unpredictable environments is very difficult. I navigate by moving from waypoint to waypoint, and if I don’t know the waypoints or if things jump in my way, well, bad things happen. Or maybe funny things.

More on all of these and their many repercussions in future posts.

People ask, “What do you ‘see’ in the places where you have no vision? Is it blackness? Emptiness? Blurry?” Again, it’s complicated, but for the most part, my brain has just removed those areas from its visual processing “algorithm.” So, I see the same thing that you see when something is beyond your peripheral vision…just nothing. There are long periods of adjustment as I lose sight—kind of like losing a limb and still expecting it to be there. But eventually it’s just not a part of the picture that my brain paints of the world around me.

Unfortunately, that’s not all. Night blindness is often the first detected symptom for folks with RP. What is left of my retina doesn’t detect light well, so I need much more of it. The result is that I’m totally blind in low-light situations. I need direct light to see any kind of detail. I carry a flashlight everywhere I go and use it regularly day and night.

So, I need bright light. But it is also my nemesis. My eyes compensate like one would with a digital camera…by cranking open the aperture (pupil) and turning up the gain on the sensor. This does allow me to function semi-normally in certain situations. But it also results in severe light sensitivity. As with a camera, the wider pupil also results in loss of detail, and bright light can almost entirely wash any other visual information. To make matters even worse, although my pupils do function, they are VERY slow to adjust.

The results of all of that are varied. I’ll post more details in the future. But for example, I am no longer able to read a computer screen for any length of time without inverted colors. It’s like trying to read while staring at headlights. I truly need dark mode on all of my devices. Also, changing lighting conditions are challenging, especially when they are extreme. When I come in from outside, my eyes can take many minutes to adjust. And bright light sources like sunny windows in otherwise moderately lit environments can really cause havoc.

Finally, a common comorbidity with RP are cataracts, which cause hardening and blurring of the lens. Of course, this one hit me, as well. A number of years ago, I had cataract surgery. It was great. I was the youngest patient in the surgery center by like 30 years. The process involves using a magic wand to dissolve your natural lens and replacing it with a plastic one. This gets rid of the blurring, but entirely removes the ability to focus. As a bonus, I did go from needing coke bottle glasses to just needing a couple of diopters of correction. But this further complicates reading, and means I’m constantly donning and doffing my specs or having to look below them to read. Minor in the big scheme of things, but it does make me look and feel like a damn old fart.

Okay, if you made it this far, you deserve to be let off the hook for now. There’s more like the fact that my corneas—the eyes’ (usually) clear “lens caps”—now seem to cause my sight to remain blurry for the first couple of hours of each day. Or that the eye strain can sometimes get so physically painful that I have to close my eyes for long periods during the day. But this is a mostly complete and accurate snapshot of what I’m currently living with physically.

I guess I didn’t present too many funny or uplifting or forward-looking things in here. Truth is, you kind of have to muddle along with me through these sewers to eventually find the humor and hope in all of this. Because it’s complicated. But I’ll get there if you’re patient.

[blindprof]

Coming Out

Over the past couple of years, I have been working to develop a wearable assistive device for people who are blind or visually impaired (B/VI). One obvious consequence of this is getting to know and interact with quite a number of folks who are B/VI. And though every person is unique, I’ve found it a near universal truth that they all want passionately to be seen as normal. To feel normal. To just be a person who happens to be blind, not a blind person.

That’s understandable. Most everyone wants to be normal, certainly with regard to physical abilities. But in my experience, the quest to be normal can have some detrimental consequences. And it is partly with those consequences in mind that I’m starting this blog.

So let me begin by “coming out of the closet.” I am a blind man. Apologies to the LGBTQ community for borrowing the phrase, but it fits. My friends and family obviously have known for many years. And I’ve never kept it secret, per se. However, in my own quest to feel and to be seen as “normal,” I’ve kept the nature and severity of my condition largely hidden.

First, it might be helpful to understand what it means to be visual impaired. Per The American Foundation for the Blind, there’s not a single, agreed-upon definition. Rather, the term is used to describe a variety of levels of visual (dis)function. People may be classified as having low vision or being partially sighted or legally blind or totally blind. And as you might ascertain, only people with total blindness have no sight. The remaining 85% of us retain some level of vision.

In the US, I’m considered “legally blind.” Per the World Health Organization, I have a “profound visual impairment.” In both cases, these designations are just one level up from total blindness. In a later post, I will go into detail about what and how I see. But in short, depending on the level of ambient light, I have a corrected visual acuity of around 20/50, which is not terrible. However, I have a visual field under 10 degrees, which some might refer to as tunnel vision…my tunnel is more like a drinking straw. Anything below 20 degrees is considered legally blind. I also have total night blindness cruelly coupled with severe light sensitivity, I don’t see low contrast gradations, and I have some effed up kind of color blindness that makes everything from green to blue to grey all appear to be grebley.

I was born with Retinitis Pigmentosa (RP), a progressive, genetic disorder that essentially destroys the retina (the “sensor” at the back of the eye), usually from the outside in. It manifests differently in everyone, and I’ve been extremely fortunate (if that term can apply) to have had relatively slow progression. I’ve had symptoms since I was a teenager, and I was diagnosed at age 16 by a doctor with the bedside manner of Gregory House. However, aside from having some blind spots in my periphery and a hard time seeing and driving at night, I was able to lead an almost entirely normal life well into my 30’s. Aside from my family and closest friends, nobody really was aware that I had this condition.

Unfortunately, by the time I turned 40, RP was winning the war. I will likely have another post describing this progression as it is somewhat interesting. However, despite this, I remained stubbornly committed to being “normal.” I clung to driving well beyond the point that I should have, only giving that up entirely on my 46th birthday. Only at the end did I ever feel I might be “dangerous,” but I still probably should have stopped a year or three earlier.

I think likely the fear of losing the independence that driving gave me was a major reason I hid the severity of my disease progression for so long. I mean, saying “Sorry, I can’t do that because I’m blind,” isn’t exactly the kind of thing one says as they are stepping into their car to drive home. Though it isn’t the only reason. As I have now come to know, nobody wants to be “seen” as the blind dude. We want to do all we can to just be like everyone else.

But we’re not just like everyone else. We can do a lot but often need assistance. We can work but need accommodation. We don’t want pity but do need understanding. And in order for any of that to happen, we need to be seen for who and what we are. And yet…

To this day I will not speak up if I need someone to turn up the lights. When someone shows me something, I’ll nod or smile or laugh along with them as though I’ve actually seen something on that tiny, dim screen or piece of blank-seeming paper. I will not ask for help navigating a dark space or finding a light switch. I will make up an excuse for a clumsy misstep, wrong turn or bumping into someone (or a wall). I avoid social situations because of the inevitable missed social cues and handshakes left hangin’. I will avoid drinking and “hold it” nearly indefinitely if it means I don’t have to try to locate a bathroom (I have a bladder the size of Alaska). I will pretend to need to leave early or late so that I can avoid navigating a crowd. Even when asking for accommodation, I will hide behind an easy, known excuse (e.g., I can’t drive) rather than the truth (e.g., I’m paralyzed with anxiety or need time to recover from extreme eye strain). I am basically my awkward pre-teen self, slumped in my chair to avoid notice—not wanting to stand out so that I might…just…maybe…fit in.

This is the first of quite a few blog posts that I have planned. I have no idea how many there will be or how long my motivation will last. However, I felt compelled to open the closet door on my life. Or at least to crack it a bit. People like “feel-good” stories of “differently-abled” people overcoming incredible adversity to achieve success; the reality for most people with disabilities is far less heart-warming. I will no doubt share both kinds of tales here. I will be truthful and will no longer try to hide behind a façade of normality. But I will usually be positive and forward-looking. I live with occasional bouts of anxiety and depression; I sure as heck don’t want that to be contagious. Those who know me know that I like to inject dry humor in my writing. That’ll no doubt be in here, as well. But don’t expect cat pictures…unless there’s a funny story about a blind cat. And even then, probably no cat pictures.

Mostly, though, I’m just doing this for myself. Not long ago on social media I posed the question whether blindness was a “hidden disability” akin to many neurological disorders. For me, it largely has been. I’ve been quite successful in my quest to be perceived as normal. But I’m not. And I’m officially “out.”