"Retinitis
Pigmentosa" sounds like a rare breed of hog. It doesn't sound like an adjective
to describe a person. At least, it doesn't sound like an adjective I would want
to describe me. Yet it does. As much as it describes my daily life, it describes
me.
Retinitis Pigmentosa (RP) is the name given to a group of hereditary diseases
of the retina of the eye. The retina is located at the back of the eye and acts
like film in a camera, receiving and processing all of the pictures that come
into view. The retina is a delicate layer of cells that pick up the pictures
and deliver them to the brain. In the human retina there are two types of light
sensitive cells-rods and cones. Cone cells are located in the center of the
retina, the Macula, and are used to see color and precise objects like small
print. Rod cells are much more numerous and are necessary for peripheral and
night vision. There are about 120 million rods in the human eye, mostly at the
outer edge of the retina. In a person with RP, a breakdown has occurred in the
function of the rods.
Since the retina is so complex, there are many forms of RP, and as a result,
many different symptoms. But the basic deficiencies in all people with RP are
a loss of peripheral vision, often called "tunnel vision", and poor
night vision, often referred to as "night blindness". RP is a degenerative
disease, which means that rod cells will continue to dysfunction over time,
causing the further loss of peripheral vision but eventually entering the central
vision, leading to total blindness. This happens at various times depending
on the person, sometimes occurring in young children but many times not until
middle-age or beyond. Some people may be diagnosed with RP as a child if their
vision difficulties are apparent, and others may not be diagnosed until a much
later age.
Retinitis Pigmentosa is a genetic disorder; my parents both unknowingly carried
the gene, which left me with a 25% chance of having RP. As chances often have
their way, I was diagnosed with RP when I was 5 years old, at which time I had
already lost a significant portion of my vision. But I am told that the vision
loss occurs at such a slow pace that people with RP often adjust to the vision
loss in such a way that they do not notice the changes at first. Fortunately,
I have not lost any noticeable vision since that point and I maintain a significant
portion of my central vision, which is relatively normal at 20/50 in my right
eye and something ridiculous, like 20/400 in my left eye. I have grown accustomed
to the difficulty of describing what I see to people since it is the only vision
I've ever known.
But from the vision I do have, I'll try to explain how I see my surroundings.
People often wonder how "much" of them I can see when I'm having a
face-to-face conversation with them. If I look at a person's face up close,
I see parts of their face. If I take a few steps back, I can see their face
in its entirety. When I try to show people what my line of vision includes,
I usually hold a pen directly in front of my right eye as an example (I don't
use my left eye because the RP already interferes too much with my central vision).
If I move the pen slightly to the right, slightly to the left, slightly down,
or slightly up, while still staring straight ahead, it disappears from my view.
But if I keep moving the pen further to the left, right, up, or down it returns
back to my field of vision. In other words, I can see it when it is directly
in front of me and to the far left, right, top, or bottom, but there is a large
gap in between the center and the sides that I cannot see. It is like looking
at a one-dollar bill, and seeing George Washington's face along with the outer
corners of the bill, but nothing in between.
It's not as if the spaces that I cannot see are black or white or anything at
all-they're just not there. I don't even think about objects that I run into
as being behind my "blind spot"; they just don't exist (at least until
they smack me). It's like seeing behind you-it's not a black void behind you-it
just doesn't exist because your visual field does not extend behind you. It
makes me wonder whether people who are born completely blind really just see
black nothing (like when we close our eyes) or whether they really see nothing.
In school, I had a "Vision Itinerant" (as Cook County Educational
Services called the position). Her job was to make sure I went through school
without difficulties. She used to enlarge print, which actually only made it
more difficult to see. Since my visual acuity is normal, but my peripheral vision
is so scattered, it was as if she made parts of the print disappear when she
enlarged letters. I remember seeing a packet of my Vision Itinerant's evaluative
information addressed to my parents sitting on our kitchen counter when I was
in fifth grade. I angrily ripped up the papers and threw them in the garbage,
never telling my parents they received such a report. The only thing her reports
ever seemed to say were "Joy refuses to ask for help". Did it ever
occur to her that I didn't need the type of help she offered? Did she ever come
to my gym class and step in front of the ball before it hit me in the face to
the hysterical laughter of the other children? I didn't need her to enlarge
my print-I needed someone to tell me that I wasn't as awkward and awful as I
felt. Though I was young, I was old enough to be angered by people's attempts
to evaluate what they cannot understand.
I always felt I should possess some amazing talent to reconcile my missing rods
and cones. Perhaps if I stood out as a musician, athlete, or scholar, I would
not stand out for my lack of vision. My parents took me to singing lessons with
a nice, old nun in a dark, scary convent when I was eight. Yet "Go Tell
It On The Mountain" practiced 50 times over did not improve my voice. I
auditioned for the Young Naperville Singers in hopes of improving, but the director
said she had heard kindergartners who could hold notes better than my third
grade voice. That ended my hopes of becoming a female Stevie Wonder.
I also tried my luck at cross-country, a fabulous sport where there is no ball
to weave in and out of my speckled basket of vision. I was a good runner, but
didn't stand out as the one who won the races, and in my narrow vision of compensation
I wanted to be that winner.
I think we're taught this type of compensation in America. If you're not right-brained,
you better be left-brained: and if you're not left brained, you sure as heck
better be right. If you're both, you're blessed. If you're neither, there's
something terribly wrong. If you're overweight, you better have a superbly gregarious
personality. If you're lacking in looks, you better be a genius. And on it goes.
Sometimes we compensate with lies. I know I have. When people point to an object
of interest, whether out the car window or down the street and say something
to the effect of "look at that", I oftentimes have no clue what they're
looking at, but I say something to the effect of "oh- wow". Any response
similar to "oh- wow" works with most anything. It's not that I'm uninterested
or that I enjoy faking interest, I just get so tired of trying with all the
vision I can muster to see the particular object a person is pointing to, while
they repeat "Don't you see it? It's right there" a few times until
the object has passed, and I am left feeling somehow isolated. I compensate
in the same awkward manner when I trip or bump into objects (or people) due
to my vision. I will say things like "I'm such a klutz" or "Gosh,
I'm so tired and disoriented today". Why can't I just say, "I'm visually
impaired"? Those words never come out of my mouth; they sound too definite.
Last summer I stopped at a restaurant to use the bathroom. It was very dim inside
and I wandered around looking for what must have been the obviously placed bathroom.
When I finally reached the bathroom door, I tripped over a low stepping stool
on the way through the door. A woman working at the restaurant turned to me
and asked, "Have you been drinking young lady?" I was so taken aback
that "uh no" was my only reply. Her words stung in a place I couldn't
define. I cried when I got back into the car, and when my husband asked me what
was wrong, I said, "I feel like I'm always drunk", to which we both
started laughing. Sometimes laughter compensates.
I am impressed with the human body's ability to compensate for its losses. While
humans cannot re-generate cut-off body parts like certain reptiles, the human
body has its own way of balancing itself. People born without arms have an amazing
way of doing almost everything imaginable with their feet. I once knew a guy
with no arms who drove with his feet, made sandwiches with his feet, and even
played the guitar really well with his feet. It was incredible to see those
toes developed to their full capacity. While I do have occasional run-ins with
inanimate objects, I am continuously surprised by the number of times my senses
of hearing and touch have protected me from danger. In familiar places, I can
walk alone at night and get around very well even though I can see virtually
nothing. I memorize stairs without even thinking about counting them. My other
senses help me "fake" normal vision in many situations. When I cross
streets or walk in crowded areas, for example, my hearing can tell me which
direction a car is coming from, where the other fast footsteps are in relation
to my own, and even whether something out of the ordinary is taking place around
me, such as construction. My senses obviously cannot compensate for my vision
completely, as many scrapes and bruises have reminded me, but they do an efficient
job on a daily basis.
My sense of touch is the most useful. I started taking advantage of it when
I was in elementary school. My Vision Itinerant (spoken of so fondly earlier)
used to teach me to feel around for objects with my hands. She would pour a
huge can of tiny beans all over the floor of a small meeting room, and tell
me to pick all of them up. If I missed any, I would have to feel around across
the floor until I found them. How uplifting to be crawling around on the floor
like a lost animal while the other children read books. But this little exercise
did start to help me when I lost coins or other small objects at home. If the
object was out of my line of vision, I just felt around for it. This works especially
well when searching for white light switches on a white wall. When I used to
do this in front of my dad, he would tell me to stop feeling around "like
Helen Keller". I occasionally still feel around for things I lose at home,
but only when no one is watching me. Sometimes we learn that certain forms of
compensation are unacceptable to others.
I am considered "legally" blind yet most people have no idea until
they've spent a lot of time with me. In order to receive assistance with my
college education, I was required to see an Ophthalmologist who would assert
whether my visual fields were below 20 degree, which is the limit for the definition
of legal blindness. I felt somewhat odd when I found out that I do fit the definition-as
if the "legal authorities" had spoken and I was officially disabled.
Many people have wheelchairs and handicapped stickers for their car to tell
them that they are, in society's mind, differently-abled. I don't carry a white
cane. I don't have a Seeing Eye dog. And I don't wear dark glasses. In a way,
I felt like I had cheated somebody because I can see adequately compared to
many people. It doesn't seem fair that someone who needs a cane should fit the
same definition as someone who can read regular print. The label "legally
blind" did not change any aspect of my life, except that I can shock people
who ask me why I can't drive a car by replying, "Oh-it's nothing-I'm just
legally blind."
Society has a strange way of "looking" at vision-it's everything that
points toward knowledge and success in many ways. "Find a vision for your
life", "Envision your future", "Reflect on your past",
"Imagine a world", "Look at it from a different perspective",
"Picture this", "Mirror that". Philosopher Richard Rorty
explores the notion of this ocular imagery in his book, Philosophy and the Mirror
of Nature. He wonders at the idea of "looking at something (rather than,
say, rubbing up against it, or crushing it underfoot, or having sexual intercourse
with it)." I remember looking at a job description that said "must
have an eye for detail" and wondering whether I possess such a qualification-I
certainly miss a lot of details with portions of my vision gone. Rorty referred
to this imagery as a "historical phenomenon of mirror-imagery, the story
of the domination of the mind of the West by ocular metaphors, within a social
perspective". I think society would do well to submit a "revision"
of such language, although I'm not quite sure we're up for that type of challenge.
At some point in my attempt to compensate by searching for a talent, I thought
I might become a famous novelist. But when my high school English teacher put
it bluntly-"You're a good writer, but you lack knowledge," I took
her words as a sign. So, I dropped out of all four of the English classes I
was signed up to take the following semester and took to learning. Although
my teacher probably wanted me to take up math and the sciences-subjects I really
lacked knowledge in-- I began to study my favorite topic-people. I went on to
college and studied sociology and anthropology, but learning about various cultures
vicariously wasn't enough. I needed to see people firsthand. So, taking the
"simplest" route, I accepted a job that required more driving than
most truck drivers encounter-casework for foster children in the Chicago suburbs
(where public transportation is an oxymoron). Whether by foot, train, plane,
taxi, bus or the automobile of my chauffeuring husband, I made it to my appointments-and
usually on time.
Detailed scheduling and planning became an understatement as I strove to excel
in a job that is difficult and stressful for the perfectly-sighted, yet nearly
impossible for a visually impaired person who cannot drive themselves, much
less the foster children, to various appointments such as courthouses, doctor's
offices and schools. With the majority of my energy used up on transportation
issues, it was not a career I could stay in long-term, but I stayed just long
enough to prove a point- I could make it work, even if it was just long enough
to gain the experience I needed to lead me to other jobs that did not require
driving. My yearlong dabble in case management also allowed me to observe people,
as was my original intent. Observing abused and abandoned children whose existence
in each foster home depended on the ways they chose to compensate for their
lack of loving biological families showed me a lot about the human capacity
to adjust-and a lot about when that capacity reaches its maximum. I also noticed
a tendency of my co-workers and I to focus too much of our attention on the
children's negative compensative behavior, such as hitting and kicking, and
not enough on their positive attempts to please people with artwork and storytelling.
This tendency is not a fault of the social service sector alone, but of Western
society and our continual focus on self-sufficiency.
I've come to learn that we should concentrate on our strengths, but we shouldn't
rely on them to block out our weaknesses. Our weaknesses will still be there,
and we must deal with them. Our equation of wholeness is flawed-a visual impairment
is not a -50 and a great voice is not a +50. A visual impairment could be a
+10 and a great voice a -25, depending on how they shape and teach us as people.
I don't want us to look through this narrow tunnel of integers anymore-there's
too much we're missing.
I don't wake up every day thanking God for my dwindling vision, but I do wake
up feeling thankful for the gifts my visual impairment has given me-sensitivity
to others, intuitiveness and the ability to observe the world through a different
set of lenses than the average person.