Preliminary note:
This is quite definitely
an exploratory piece that is targeted for the beginning of a nonfiction book on
my vision loss over the past twenty five years (Into The Haze). It is my
initial effort to set the tone, establish the context and present the voice of
the book to follow. Feedback on any and every aspect will be appreciated.
Into The Haze
Part 01
Seeing and
Perceiving
Chapter 01
I Am Going
Blind
I am going blind. There is no other way to say it. However, I have tried
to express this reality in ways that seemed adequate, but they are all
euphemisms, expressions that soften the blow of the reality, but the reality
remains: I am going blind.
If I say "I have pigment dispersion glaucoma" or "I am
vision impaired" I would not be telling a lie. Both statements are true.
Both statements are facts. They are static declarations that imply a stabile
condition. They say that there is something within me that is different than
the norm. They say that I have a problem, but they don't give any indication of
what that means. Glaucoma simply means that something has raised the pressure
within my eyes. Like blood pressure there is no pain and no indication that
anything will happen as a result. For untreated high blood pressure, the end
result is death. For untreated pigment dispersion glaucoma, the end result is
blindness. But for high blood pressure there is a treatment and life goes on.
No one needs to know anything has ever happened because there is no visible or
behavioral residual effect. With pigment dispersion glaucoma, though, there are
no treatments that stop it, only delay tactics. The end result is, inevitably,
blindness. The only variable is the timing.
An overly simplified metaphor would be one in which a person lives in a
large room where 1000 light bulbs are installed an lit in the ceiling. Each
day, one light bulb is turned off. Over the course of 1000 days, the ambient
light in the room would be reduced at an almost imperceptible level with each
lost bulb. Our marvelous human adaptability would simply operate at some
"normal" level with each new day, not being conscious of the
diminished luminosity. Eventually, we will start to get the impression that the
room seems darker, but it will be easily brushed off as a figment of our
imagination. It will not be until we are unable to perform important tasks like
reading, cooking, writing and other activities that we will become serious
about finding a solution. If there is no solution we do what we can until the
last bulb is turned out. Then we start depend entirely on our other senses and
do what we can.
In my case, I can throw other complexities into the room, like fun
house mirrors that distort all images. I could add a steam or smoke machine
that clouds the air, removing the clarity of the air. For extra measure, I
could put on glasses that are calibrated for an incorrect strength, removing
visual accuity. Then, to make everything more interesting, people would sneak
in every night and move all of the fun house mirrors, change the strength of
the glasses to a stronger, more incorrect level and increase the density of the
steam or smoke. That is how my life has progressed over the passed twenty five
years since my first diagnosis of glaucoma.
In a world of humans with eyes, there are generally two states: the vast
majority who can see and those who can't. Everything in-between is poorly
understood, and in the case of pigment dispersion glaucoma, it is always
changing for the worse. There is no point that you reach where you can say,
"That is it. That is how I see with pigment dispersion glaucoma."
Each day turns off another pixel in the screen of my life. Each day turns off
another light bulb. Each day introduces a new set of optical illusions and a
new level of cognitive confusion. But people, the culture at large, potential
employers and health insurance organizations want to have a number that will
tell them definitively what my vision is. Is it 20/30, 20/70, 20/200? They don't
want to hear "It depends...".
No one wants to hear about visual field range, low contrast resolution,
distortion, low light blindness, glare effects, low acuity and the loss of
stereoscopic vision. To move into a discussion of visual cognition is even less
appealing, but these are the elements of vision that we all experience from the
moment our eyes opened outside of the womb. They define the way we perceive the
world, the way we relate to the world and all creatures within it. They also
provide the foundation for how we communicate with each other, which is
predominantly visual. Fortunately for most, this is a seamless and
"invisible" process. We don't know it happens. It just seems to work
"out of the box".
When we walk into a room, or any space for that matter, there is a
symphony of reflected light that is gathered up and passed back into the brain
for analysis. The "gathering up" is accomplished by the eyes. This is
vision. The "analysis" is done by the brain. This is cognition. The
result of visual cognition is an "image", which is one aspect of
perception. This "image" is made up of millions of components that represent
everything from color to dimension, distance, direction, orientation, shadows,
movement, luminosity, patterns and many other elements in a scene that
surrounds us. This "image" is the fodder for memories, associations,
recognition, emotion, knowledge and other factors that have an impact on how we
feel, how we act and how we think. All of this occurs before we have any
awareness of where we are and what is happening.
We like to think that this happens instantaneously. In reality, we
depend upon it happening almost instantaneously because, in some sense, nothing
happens until we "perceive" it and perception is the result of this
gathering and analysis that is accomplished by the eye and brain working
together. If it didn't happen we would never know we are in danger. We would
never recognize other people. We would never be able to navigate through the
world or learn anything. A similar cognitive process happens with our other
senses of touch, smell, taste and hearing, but with much less data to work on
and much less complexity.
If we had to think about the vision machine in order to use it, it would
never be useful to us. Imagine if we had to consciously turn our eyes on and
explicitly choose what data to gather, what to send back to the brain and which
data are to be analyzed and in what way. It would take seconds, if not minutes
to even know that we were in the room and even longer to figure out what else
was in the room, including friends, relatives or lions and tigers.
With total blindness, there is no visual information arriving in the
brain. Even if the eyes are perfectly, physically functional, if the
information from the gathered light does not make it to the brain nothing is
"seen". This is when the brain has to use the other senses of touch,
hearing, tasting and smelling, but all of these senses together do not bring
even a sliver of the information that vision provides. There is a reason for
all of those expressions that indicate ignorance ("I just can't see it"),
denial ("I turned a blind eye towards it"), risk ("I just jumped
in, totally blind to the consequences", "a blind date"), deceit
("a duck blind", "blind sided") and other types of
behavior.
But, at least with total blindness, the brain knows that there is no
visual information and doesn't try to "see". With vision, even if it
is deeply compromised, the brain will defer to vision first and foremost and it
will try to figure out what the eyes are "seeing" before anything
else is done with the other senses and it will believe what it "sees"
even if it is incorrect, because the brain will fill in the blanks left by the
eyes with what it (the brain) believes should be there, even if it wasn't
really there. At the same time, it will not believe that something is there if
it can't "see" it.
This is particularly true if a person had "normal" vision from
birth and then experienced a degradation of the vision later in life. In my case,
I had thirty five years of uninterrupted binocular vision with a full visual
field range, full color, good high contrast resolution, no distortion and many
of the other elements of what would be called "normal" vision. My
brain developed with that "normal" vision profile, which allowed me
to live a reasonably "normal" life. For most people, this is a
"normal" experience, since "normal" vision has been fully
established by the time they are three years old. After that, it is all a
matter of gathering and learning.
So what does the brain do when the data coming in from the eyes is no
longer valid? If everyone around you starts to lie to you all of the time, what
happens to your perception of the world. What do you do when you have no
confidence in anything said to you? With pigment dispersion glaucoma, the
optical nerves die randomly over time as a result of the sustained, elevated
ocular pressure. As the optical nerves die, the information the brain is
depending on to "see", "perceive", "analyze" and "survive"
is becoming less dependable. In other words, the eyes are lying with increasing
voracity, continuously.
If I can't, with confidence, understand what I am "seeing",
how can I communicate to others what I am "seeing"? This has become
the ultimate challenge. I have two eyes, although my left eye only exhibits a
sliver of peripheral vision and my right eye has a vision that is affected by a
variety of factors that limit its ability to gather enough accurate, reflected
light to send back into the brain for effective analysis. But to others, my
eyes look normal. My "blind" left eye tracks with my right as it has
for the past sixty years. I am mobile. I have no difficulty moving as I have
throughout my life, although I am slower at sixty than I was at twenty. I can
physically do everything a "normal" person can do. So it looks odd to
others when they "see" me use a walking stick with reflective tape to
help me "see" and help me avoid falling if I run into something I
don't "see".
The visual cognition part of my brain does not know that my eyes are
lying to it. It really believes everything that is coming back from the eyes is
complete and accurate. There is no way for the brain to know otherwise. It will
do everything necessary to ensure that the image created internally is
"complete" for the sake of "memory" and analysis. So, if my
walking stick stops in mid-air when the tip hits the edge of a retaining wall
that the eyes and brain didn't "see", my brain wants to believe that
the stick is stuck in the air. It doesn't believe what it can't "see",
so the retaining wall does not exist. If my leg hits the "unseen"
retaining wall, bruising my shin, my sense of touch will send a somewhat urgent
message to the brain saying that there is a hard object in the path and that
the shin is injured. The brain, wanting to believe the eyes, will take a second
look with the eyes, which may very well still not "see" the wall. Now
the brain has to mediate between the eyes and the leg and respond with a
counter action. Often I will close my eyes just to force my brain to use my
sense of touch and bypass the superior clout of visual cognition. This
disconnect between my visual cognition and the rest of my senses, and the
ensuing effort to resolve the conflict can take time result in catastrophe if
there is the possibility of falling into a pit or stepping in front of a car.
It is not as though I woke up one day and realized that I could not see.
That would be blindness: no light; no purpose for windows, street signs or
television; no context for most of what we normally "perceive" as
beauty. That would allow me to say that I am blind. That would allow me to say
something the world understands: that I am handicapped and need assistance
crossing the street, reading a book or shopping for groceries.
I've seen the small bumps arranged in patterns on elevators, office
doors and public telephone keypads, but there is a sea of three dimensional
reality that gives no clue to its existence until it is tasted, touched, heard
or smelled. Vision is the glue that ties it all together within our brains.
Without it, the world is a labyrinth filled with obstacles and no map. It
cannot be studied, only experienced. Every wall must be felt. Every flower pot
must be tripped over or bumped into. Every low-hanging tree branch must be
grappled with as it tugs at clothes, tangles with hair and gouges the skin.
City streets are savage rivers teeming with metallic piranhas eager to devour the
visually clueless racing for the curb. I feel myself slipping into the murky
currents of this haze that swirls around me. I am unnerved when I see my
fingertips disappear while cutting carrots or onions. I shudder when I step
into a room and ask the group of people standing nearby if they have seen my
wife, then one of the people in that group steps towards me and says, "I'm
here." I marvel when I am talking to someone and their head suddenly fuses
into the brick wall in the background, leaving a body with no head.
The lines of text that form on the screen as I type them are both out of
focus in the midst of a glaring backlit screen and unfolding in distorted
waves. If I place a strait ruler along the line, it too will rise and fall in sync
with the letters. There is no "true"-ness in the contours of my life.
Everything stretches, weaves, disappears and rises up from the obscurity like a
goldfish floating to the surface of a pond obscured by moss and algae.
I am no longer in the land of the sighted. I am not yet in the land of the
blind. I am in the land of smoke and mirrors. I am going blind.
