For Macular Degenerates |
The first step down my
treacherous lonely road was a sharp dip towards a dark ravine.
Down, down, and down some more to the
gloom of a hospital basement retinal
clinic. Along the corridor I stumbled, barely aware of the ugly lime green
walls, the usual banal pictures, in search of the supposedly renowned
retinal
surgeon I had to see.
After the double duty dilating drops,
intense white lights flashing through
dye injection Angiograms, my worst fears were confirmed and even more than I
thought. My right eye was declared "wet," my left eye, "dry." The surgeon
then said, very matter of factly, "We have to operate either now, or
tomorrow
first thing. Go have a cup of coffee, take a deep breath, and then come and
tell me what you have decided."
I did not drink coffee, but ran outside.
Assaulted by all the movement around
me, I froze on the hospital steps, a traffic circle of people in distress
with ambulance sirens screaming in the background. Awash in glaring
sunlight, I found myself petrified by the thought that having been told
barely 24 hours ago my eyesight was threatened, and I was, in fact, well
on my way to becoming legally blind in both eyes. I felt that every step I
took
down those cold, cold stone stairs would be the last step I would take as
the person I had always been.
My husband caught up with me, and we
reviewed my options, which were non-existent, as I already knew in my heart
what had to be done. This did not lessen
my fear at the thought of a "hot" laser burning the insides of my eye. It
was
all coming at me too furiously fast.
"Do I trust my surgeon? Do I trust my
husband?" was
all I could think of. "Do I trust myself to handle the intense misery I
felt,
and still go on?" I was such an emotional wreck that I was not able to make
the simple decision whether or not I wanted to drink coffee. All I wanted
to do was retreat, and maybe, just maybe, this evil thing would go away.
I did not retreat, but returned and
submitted to the blinding laser holding
on for dear life to my trust in the love of my husband and in the expertise
of the surgeon. Would I survive this trauma? I did not know it at the time,
but, as I look back, I can see that this was an act of faith--my first Jolt
of
Hope--a pebble to mark my path. Let me share it with you: Surgeons are not
there to talk about your emotions, because they have no time; so it is vital
that someone accompany you along this first stretch of road.
The next days brought further loss of
vision, as though cross-eyed, objects
and people changed their shapes. Everything and everybody suddenly looked
different, and I could not even begin to cope. I kept asking myself, "Where
is
the real me who functioned so well before this catastrophe?"
Two weeks later, I limped back to the
menacing man with his big white
blinding machine. The first laser had failed, and neo-vascularization had
set
in again. "No," he said, "no more 'hot shots.' The affected blood vessels
are
too close to the center of the macula. Go home, adapt, and come back again
in three weeks time."
Adapt indeed! Flashing lights, red
images floating about in my right eye,
severe cross-eyed vision distorted the world I had known. It was a while
before I could let go of my stubborn pride and ego and admit I needed help,
as
I was so sure I could travel this road alone.
With trepidation I searched the internet
for information about my disease. I
was rocked by what I read, but knew that knowledge was essential. This was
not enough, I felt in my heart. I needed more in the form of help. Through
MD Support, I finally found a new friend to whom I could relate, and, at
long
last, I could ask for help from someone who knew what MD is all about. I now
had two more pebbles to mark my path, which have proved repeatedly to be
very
important Jolts of Hope. Let me share them with you by saying that they are
a MUST: search for knowledge and seek informed emotional support.
Barely two weeks later, I was back to
the ravine as my vision had
deteriorated further. I was told, "We will have to laser again." There no
longer seemed to be any concern about the center of the macula. The race was
on to prevent profound loss of vision. More confused than ever, I submitted
to what ended proved to be a rather painful laser surgery for the second
time. The doctor said, "Come
back in three weeks, or before if the good eye shows significant change."
Hibernating took over again. I felt lost
in a desert. The only connection I
had to the outside world was with the internet, but this kept me sane. No
way was I going to accept the invasion of darkness.
Unexpectedly, I received two cards in
the mail. One with thoughtful words
from fellow staff members. The other with messages of hope from patients I
helped in the treatment process. This came as a complete surprise, because I
had withheld contact with anyone at my work place since the first day of my
diagnosis. These sensitive souls, through some form of ESP, must have sensed
the distress I was in. I now had another important pebble to mark my path:
Have faith in the basic decency of others, and never underestimate it's
value
on this journey of hope.
The following visit to the clinic showed
the second laser had also failed, as
new neo-vascularization was raging onward. My surgeon was more empathetic
this round and took the time to give me a pep talk about coping in new
circumstances. He stressed the importance of taking advantage, day by day,
of the vision I had left, even if it was bound to fade. "At least it is
progressing slowly, and you must have HOPE that it will not turn 'wet' too
quickly," he said. I could now cast another pebble to mark my path. My
surgeon, although I expected him to work miracles, could be trusted, even if
he failed. I knew he also was frustrated that we could not save the central
vision in my bad eye. I owe to him a Jolt of Hope for attempting to allay my
fears and for his determination to do, against so many odds, whatever he
could to save my so called good eye.
These Jolts of Hopes (I call them that,
because at first they seem like
"low blows") may help by showing how someone else is walking down this road
as well. Hopefully, you may identify with what has helped me: