Rhonda
Hardine
11-02-04
Eng 100
When
My Eyes Were Opened
When
I was first diagnosed as having Bechet’s Syndrome, I had no idea how much
my life would change. I was in U.C.L.A. Hospital the summer of nineteen seventy-nine.
I was just married when I had started to become ill with the flu. I became worse,
then better, then progressively worse. Three months later I was officially diagnosed
with Bechet’s Syndrome. I went from one hundred eighteen pounds to eighty-three
pounds, partially paralyzed from the waist down, losing the ability to speak,
being declared clinically dead for over one minute, and having my hair fall
out in clumps. One afternoon the doctors had informed me there was nothing else
they could do.
The Chaplin for the hospital walked in my room leaving his business card on
my little night stand. Since I couldn’t speak, the hospital staff gave
me a small chalkboard to write on. I gestured to the Chaplin, then proceeded
to write on the chalkboard, ‘Why did you leave your card ?”. The
Chaplin replied: “in case you want to talk, you know last rites and all.”
I thought to myself that this is not the kind of conversation I want to have
at the age of nineteen years old. With all of these medical disasters happening
to me, my eyesight was never affected. The doctors explained that if this illness
(Bechet’s Syndrome) got into my blood stream again, I could be paralyzed
from the waist up, the waist down, I could lose my mind, ( no comment!) or I
could die. From a process of elimination, I determined that there was one thing
I had not experienced on the doctors’ list of side affects from this illness.
I thought to myself “Well, at least my eyesight is still intact.”
Through extensive experimental medications, I became well again. My hair grew
back, I gained thirteen pounds over a period of ten years. My speech came back
immediately; a girl has to talk you know! The temporary paralysis had disappeared
and I had full use of my limbs. I felt this horrible medical experience was
behind me for good. The doctors cautioned me that my disease was now in remission
but it could return at any time in a different part of my body . For ten years
I had small recurrences of Bechet’s disease, but nothing like in nineteen
seventy-nine.
Until then on a late Sunday afternoon, my husband and I were moving from our
old apartment in Encino to our new town home in Mission Hills. I was driving
my nineteen seventy-six Brown Ford Pinto with the green passenger door. I noticed
there was something drastically wrong with the vision in my left eye. Since
this was late afternoon on a Sunday and I wasn’t in any apparent pain,
I thought I would make an appointment on Monday morning to see my regular physician.
I mean this could only be a temporary condition because I have always had 20/20
vision and in my opinion, “I feel that my eyes are one of my better features.”
So losing my eyesight was out of the question.
On Monday, I reported to my regular physician, who stated he had never seen
an eye disease such as mine. He referred me to an eye specialist, who then referred
me to another eye specialist who left me in the examining room while he looked
up my disease in medical reference books and consulted via telephone conference
with his colleagues regarding my case. I could hear all of this quite clearly
from the examining room. I guess what they say is true, that when you lose one
of your senses the rest become more acute. After extensive and exhaustive examinations,
I was referred to the Estelle Doheny Eye Institute in Los Angeles. This institute
is the Rolls Royce of eye research.
I was given a series of eye treatments to save what little vision remained in
my left eye. Unfortunately the disease was starting to affect my right eye as
well. The doctors started with oral medications such as Prednisone at a high
dose with not very good results. They then proceeded with a more aggressive
approach to my eye problem by injecting a liquid form of Prednisone called Pred-Forte.
This is a procedure is done in the doctors office. I was given a mild local
anesthetic to relax me. Next the doctors took a tightly woven cotton swab dipped
in pharmaceutical Cocaine. This cotton swab was placed under the bottom lid
of my eye and held there until numb. I was placed in a reclining chair with
my arms, mid section and legs were strapped in. The doctor instructed me to
hold my breath and most importantly, “Don’t Blink!” I held
my breath while I could feel the needle pierce the first top layers of my eyeball.
I could hear the doctor say “This will be over in eight seconds.”
I could feel the medication filling the back of my eye. It was over. I must
say those were the longest eight seconds of my life. The disease was causing
havoc in my right eye. I had lost all the sight in my left eye and doctors were
concerned about saving some sight in my right eye.
The team of doctors at Estelle Doheny Eye Institute approached me with an experimental
treatment that had been successful in Japan and Turkey. They wanted to give
me a drug called Cyclosporine which is mainly used for liver and kidney transplant
patients to minimize rejection of the replaced organ. I asked if they had used
this procedure in the United States for eye disease. The doctor’s reply
was, “No, you would be the first in the United States”. I thought
to myself “What a time to be first.”
After a lot of hit and miss eye treatments, my eyesight has stabilized in my
right eye, although I have lost the eyesight in my left eye completely. Through
my journey from darkness into the light, I have lost a husband, friends, jobs
and some freedoms I took for granted, but never lost my sense of humor! My immediate
family throughout this whole eye opening ordeal has been there for me every
step of the way with love, understanding and, of course, a sense of humor.
I remember my first Christmas holiday after graduating from my Blind Cane Mobility
Training Class. I was out with my sister at the mall Christmas Eve Day. The
lines were very long, my sister and I were at the end of the line. We were discussing
with the other last minute shoppers how next year would be different. All of
a sudden my sister remembered that if you are disabled, you can go to the front
of the line. At first I felt uneasy with the idea of everyone staring at me,
although I did feel pretty festive sporting my new cane. We approached the front
of the line. The sales girl took a double look and said “I’m sorry
I will be with you in a minute.” I could hear people whispering behind
us as we stood at the front of the line. The sales girl apologized for our inconvenience,
rang up our purchases and wished us both a very merry Christmas. As my sister
and I were leaving the mall with our packages before dark, we decided that we
were not going to change a thing and that we were going to go shopping next
holiday season the same way!