The Blind Vampire Hunter (5 page)

Symptoms.

Night blindness
. The
inability to see in dim light situations. Night blindness is the
earliest sign of RP. [Being night blind does not necessarily mean
you have RP. You can be night blind and not have RP.] In my case I
was always night blind.

Loss of peripheral
vision
: Your peripheral vision is your side vision, that
vision not in the direct line of sight. In my case, I started
noticing a real problem in junior high and high school sports.
Large objects like volleyballs and basketballs would disappear from
sight before getting to me. At the time, my low vision doctor
assumed that it was oversized blind spots, since little was known
about RP. Blind spots are areas of the peripheral vision where we
don’t have vision. Everyone has a small blind spot in each eye
where the nerves go out to the brain. Eventually my low vision
specialist could see the pigmentations causing these “oversized
blind spots” as he had been calling them for years.

Tunnel vision
: Loss
of the peripheral vision causes a tunnel vision effect with the
remaining sighted area getting smaller and smaller.

True tunnel vision
:
With only the use of the central vision and no peripheral vision,
someone with RP as if they were looking through a paper towel
roll.

Tunnel vision with only
light perception in the peripheral vision
: the loss of sight
is not as bluntly noticeable as in true tunnel vision, but just as
visually daunting. I eventually had to start using a white cane
because of the combination of tunnel vision and lazy eye muscles,
making it impossible to see moving objects or to see while I am
moving.

Reverse tunnel
vision
: The central vision is attacked before the peripheral
vision causing the victim to be able to see only with their side
vision. While in various RP studies I have met a number of folks
with this visual problem.

Vision loss
: The end
result is total blindness due to loss of all the rods and cones in
the retinas.

Treatment
:
Supplements of Vitamin A and Lutein.

Retina transplants
:
Various studies are underway that may lead to the replacement of
the damaged rods and cones or by implant of a computer chip. The
chip would replace the damaged cells.

I was in a study group which was testing the
use of virtual glasses. They were hoping that the glasses, worn by
a victim of RP, could fool the brain into seeing normally by
getting an image to the brain and bypassing the damaged areas of
the retinas. The study ended due to funding issues, but was picked
up by a computer gaming company to make virtual glasses for
computer gamers.

This unpleasant first visit to the Wilmer Eye
Institute at Johns Hopkins was the beginning of many years of
unpleasant testing. I should mention that this point that while
many of the tests were bothersome to downright painful, the staff
at Johns Hopkins was very pleasant throughout—with one exception,
the initial diagnosis incident given to my mother.

The easiest tests were of the normal variety,
designed to test the decline in your eyesight. One was the normal
peripheral eye test where they stick your head into a large cone
and have you indicate when the dot is visible and when it goes
missing. I took this test for so many years that the testing went
from a manual recording, to the system being totally computerized.
Personally, as a programmer, I felt more comfortable with the
computer results being more accurate.

The night vision testing was very unpleasant.
The first stage of the testing was putting test subjects in a
totally dark room for hours. Happily for us test subjects, the test
administrators quickly learned it was wise to put more than one
person at a time in the room so the test subjects could pass the
time conversationally with each other. When they tested my family,
it was early in the studies. My sister was put in a room by
herself, where she panicked and fainted during this phase of
testing. Ever heard of sensory deprivation? [Sensory deprivation.
Short-term sessions of sensory deprivation are described as
relaxing and conducive to meditation; however, extended or forced
sensory deprivation can result in extreme anxiety, hallucinations,
bizarre thoughts and depression.]

My personal favorite for pure pain was when
they put my chin in a chin vise, put a flash camera in front of my
eyes, and took a dozen or more flash photos of each eye. I found
this particularly interesting considering one of the first things
they tell you early on with RP is to avoid bright light, as it
could aggravate the RP into developing faster. I don’t know if this
testing aggravated the RP, but it sure aggravated me. Not to
mention the pain. This diagnoses of pending blindness occurred
during my college years.

During all these years of testing, life went
on.

After high school, I moved on to college. My
major studies in the field of Wildlife Biology. My future plan was
to get a career where I could spend lots of time in the woods alone
meanwhile making a living. After all, I had lots of experience
spending time in the woods alone while hiding from my peers
“getting fresh air” as a kid.

Classes were going great for about two years,
when our college program got a new department head. Mrs. March
tried to pull some fancy reprogramming that resulted in some of us
students getting burned. This gave me time to reevaluate my
situation: With the strong potential prospect of going blind, I
suspended my studies. I did not see much of a career as a blind
wildlife biologist.

Nailing a library clerk job with a major
corporation, I started taking internal classes in computer science
and found I had a real future and enjoyment in that direction. When
I found out the corporation would pay for my evening college
classes, I went back to college to become a full programmer. When I
progressed from library clerk to assistant programmer within the
corporation, I found a real first-rate apartment only a few blocks
from work.

About five years later, just like any weekday
morning, I set off to walk to work. On the way to work, I seemingly
bounced off a sidewalk sign and a pole along the way. When I walked
into my office, I accidently kicked a trash can across the room, a
trash can the cleaning crew had failed to properly put back after
emptying. Something was really wrong.

After work, it was bowling night. When I left
work, I took the bus downtown to the bowling alley. When I got off
the bus at my usual bus stop, I turned and bounced nose-first off a
telephone pole. There was no doubt about it, I had lost
considerable eyesight overnight. This was a possible occurrence I
had been warned about often during my RP testing visits.

I had been educated in the possibility that
with RP one could have a sudden noticeable loss of eyesight, and
literally overnight this had happened to me. This was not all bad.
This event was not severe enough to have left me fully blind—this
time.

The very next day I went into the Employee
Assistance department and explained what had happened. I explained
that I had gone from slightly legally blind to very legally blind,
and for starters I needed mobility training.

The next day I was called back to Employee
Assistance department and was introduced to Miss May from the
Maryland Department of Rehabilitation.

When I was asked my goals, I replied, “I’m
currently in college, taking night classes, studying to be a
programmer.”

“Computers. That’s a great field for the
blind. There is so much technology out there to assist the blind,
or legally blind in the performance of their work.”

Interest peaked, “Really, like what?”

“There are CCTVs (Closed Circuit Television
Viewers), a magnifier that can blow up a whole page onto a TV
screen. There are voice and Braille computers; and voice readers
like the Kurzweil Reader....”

After some discussion on the various machines
for the handicapped she said, “Don’t worry I will set you up. But
for now, I need to set you up with some white cane training.”

“White cane?”

“A visual aid that will assist you in getting
around safely; as well as let others around you know that you are
visually impaired and may not be able to see them.”

Later that day I got a phone call from a Miss
Becker, a mobility instructor, who set up an appointment to see me
at work the very next day. She continued to see me at work and
around about the work complex until I had my white cane mobility
training down properly using the fiber straight cane she had
provided at no cost. On the cane was the writing “NFB” so I asked,
“What is this NFB?”

“The National Federation of the Blind is an
organization about and for the blind. I highly recommend you get in
touch with them. They can be very helpful for the blind in many
ways.”

She also educated me in the various types of
white canes, “This is a straight cane. There are also folding and
collapsible white canes. The collapsible canes collapse up into
itself when not in use. I have been told that the problem with the
collapsible cane is that it may collapse while in use, so I
recommend the folding white cane. It is in four to five parts with
a large flexible band running down the center. When not in use you
fold it up and loop the end of the band around the cane. When not
in use it can then fit in your pocket.”

She must have called the NFB and gave them my
number, as I got a call from a local member to invite me to their
next meeting. The conversation ended with me agreeing that I would
attend their next meeting.

There was this one interesting, not to
mention a bit surprising incident. Walking into a Peoples Drug
Store I bumped into a big man who tried to walk into the store at
the same time.

“Sorry,” I said quickly.

“On no, I’m sorry. It was all my fault,” this
big man exclaimed with strong feeling.

I just stood there, possibly with my mouth
open. I was surprised when I realized this was the same man I had
bumped into in just the same way a week earlier. This same big man
who, after I apologized for accidently bumping him, angrily
threatened to tear my head off for being so rude and clumsy as to
get in his way. The difference, a week ago I did not have my white
cane with me.

I attended my first NFB meeting. As one going
blind, the first thing that impressed me was how many
professionally employed members were in attendance. There were
programmers, systems analysts (which I had some great conversations
with on programming and special equipment in the field of program
design), a lawyer, small company owners, and several members who
worked in fields related to the blind such as Braille proofreaders
who worked in and for the government. I was quickly impressed that
there were real blind people in real professional careers. It gave
me hope for that day if or when I went totally blind.

During my first meeting, I also learned about
a couple of great sources for supplies and adaptive education;
Volunteers for the Visually Handicapped (VVH) and The Lighthouse
for The Blind. A couple of classes at the Lighthouse in cooking
taught me that I was a real disaster in the kitchen. My gastronomy
specialty remained F-or-F.
F
ast (food)
or
F
rozen (microwave (nuked) dinners). There was a pizza place
right on the way home from work that normally you would walk into,
cross the tables area, and place your order at the counter. I
visited the restaurant so often, ordering the same type pizza, that
eventually all I had to do was walk in and sit down. They would
bring me out my Coke and when my pizza was ready (the same pizza I
always ordered) they would bring it out as well. I did not need to
place a dinner order. I just paid at the table.

Both VVH and Lighthouse had social group
activities. For instance, with the VVH group, we went to the
C&O canal for tandem biking with plenty of sighted volunteers.
I brought a date to this one, a young lady I had met at church. We
learned that tandem biking wasn’t for us. For one thing, it just
did not seem to work with a little lightweight in the front and a
big old blind guy in the back seat. Second, yes, we did try biking
with the blind guy up front. This got rid of the weight
distribution problem, but can you guess what the new problem
was?

The Lighthouse had a yearly tradition I
always looked forward to—

a trip to the Baltimore stadium to see my
Orioles
play ball
. One year, the fans were really giving the
umpire a hard time. I got an idea, which I was a little late acting
on. Just as everyone stopped yelling at the umpire, I raised my
folding white cane in the air and yelled, “Give that umpire my
white cane.” He had been ignoring everyone else, but he just had to
turn to see me waving my white cane at him and yelling again, “Give
that umpire my white cane.” If you’re wondering, no, I had not had
a few beers by then, I had just gotten into the spirit of the mob
that day. I started a new tradition that lasted years. The group,
often many of the same people from year to year, playfully teased
me about giving the umpire my white cane. One year I was ready for
them; I had brought two white canes with me. Just in case the
umpire needed one.

During my interview with Employee Assistance,
I mentioned that the sudden loss could happen again and leave me
totally blind at any time. I might have mentioned that it would be
great if I got my programming degree and got into a programming
department before I went totally blind, so I had some visual
experience within my chosen career. They acted on this.

A week later Employee Assistance called me in
and introduced me to Mrs. Walker, Head of Internal Programming
Department. The result was that I was offered and accepted a
programming position before I finished my education and received my
degree, “..so you will have the optimal time to develop program
experience while your eyesight lasts.”