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"You don't have to go
gently into that good night. You need to fight. And we need to give
you the tools to fight.” These words said by Dr. Harold Rekate, a
neurosurgeon at the Barrow Neurological Institute in Phoenix,
Arizona, applied to a particular case with a patient suffering from
normal pressure hydrocephalus or NPH. Dr. Rekate realized that what
his patient had wasn't Alzheimer's but a condition caused by excess
fluid putting pressure on the brain. Dr. Rekate serves as Chief of
Pediatric Neurosciences, and specializes in the neurosurgery of
conditions such as hydrocephalus, spina bifida, and various brain
tumors. Additionally however, those words resembled a similar
encouragement my parents received when Dr. Rekate offered his
solution to aiding me when we met with the doctor in Phoenix during
May of 2004. Dr. Rekate came as the answer to my problems, offering
an alternate solution, which didn’t involve me carrying on with my
condition. On May 26th, 2004 I had brain surgery to remove my
epileptic condition.
During December of 2004 I was first diagnosed with
epilepsy, after having a series of MRIs at Children’s Hospital in
Columbus. I was beginning to realize around this time, that there
was something wrong. I wasn’t feeling normal on a regular basis, and
I had recently undergone a very strange occurrence. Earlier that
month, I was sitting in the Reinberger Library, when I was overcome
with a strange headache. Mrs. Tong approached me in the library
sensing my malaise from across the room. She asked me if I felt
alright. Although I was responsive, she felt it was still necessary
to escort me to the nurses’ office. However, the most defining
aspect of this story is the fact that everything up to this point in
the story has been told to me by Ms. Tong, as I have no recollection
of this event happening. She later described to me that she felt
alarmed when I stared off into space for several minutes, as I made
repetitive gestures opening and closing my mouth. My memory of the
experience begins midway into a conversation with the nurse, where I
believe that I came out of my state of perplexity.
Even more puzzling to
me was the fact that this was not the first time I had fallen into a
lapse of disassociation. When I had lived in New York, I experienced
a similar confusing situation. I attended school approximately three
blocks from where I lived, and had been walking the same route for
over a year.
Suddenly, one
morning, I felt an oncoming headache. Reaching for my head, I
realized I had no idea where I was going. I
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knew I was on
my way to school, but I could not remember which way to go.
Nervously and impatiently I looked to street signs, shops, and
buildings to find a sense of familiarity to my surroundings. That
familiarity didn’t come for the entire duration of my headache. I
came to discover several months later that my experience spacing out
in the library and losing myself within a block from my house was me
having a “complex partial” seizure.
After
testing that I found that I possessed a condition called a
hypothalamic hamartoma, which was a growth on a portion of my brain
which had been with me from birth. This growth had caused me to have
what is known as “gellastic” seizures. More specifically, these
seizures were very different from the common known epileptic seizure
which causes a person to uncontrollably fall to the ground and
shake. Instead, my seizures were hardly noticeable, as they caused
the muscles in a portion of my lip to twitch momentarily. The real
effect of the seizure was experienced internally. Every time I
experienced a seizure I felt a rush, and a sudden and momentary
sense of lost control. Because my seizures happened on such a small
degree, I am known as one of the few patients who could verbally
describe my feelings associated with my seizure to a doctor while
seizing at the same time. I was told that I would have to cope with
my condition, and my only option was to begin taking medication. The
doctors didn’t differentiate my condition from regular epilepsy, and
I was prescribed several drugs such as Depicote and Trileptol.
However, the medication did not provide aid as intended, and instead
left me feeling exhausted and stressed on a regular basis. My main
dilemma was that every single doctor I had encountered could not
give me a diagnosis. Too little was known about my condition, and
too many doctors tried to simplify the resolution by treating my
case the same way they did for regular epileptic patients.
This similarly was my experience as I came to terms with
my condition, which emerged unexpectedly midway through my freshman
year. It wasn’t until after spring break, I saw myself getting
worse. It had been several months after medication, and to this day
I am determined that the medication is what perpetuated my
condition. After break I proceeded to go back to school when I began
to focus on questions about my future.
Questions like: “How long is this going to last,” or “What’s next
after I get through this,” never did I truly think I would be
dealing with this issue long term. It was a
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current dilemma, and it would go away
eventually. I went through life day by day for 3 months, without
anyone even aware that I was constantly experiencing seizures on a
small scale every 15 minutes. After all I hadn’t ever been like
this, strong overwhelming emotions perpetuating feelings of stress
wasn’t the way I envisioned my life to become.
The
funny thing is, no one is ever the first to assume that they could
ever experience something as I did. I for one always assumed that
things only happened to other people, and that nothing could ever
happen to me. My experience forced me to mature tremendously as I
learned that everyone at some point or another has to deal with a
personal issue of their own, whether it is a medical issue, or
something else. In fact, as I look back on my experience, it helped
shape me as a person. I came to realize how truly lucky I was when
things were just “normal,” I actually looked forward to living
normally, something I had previously taken for granted.
An unimaginable
amount of effort must be made not to take everything we have for
granted. It takes a good amount of consideration, for us to all
realize how lucky we are to be where we are today, and to have a
future in tomorrow. We must also realize that lives are interwoven,
and we are influenced by the individuals around us. Unfortunately,
sometimes it may take consequence or the loss of something important
to us, in order for us to realize we had it.
Standing before you, I don’t want people to recognize
me from my suffering because I realize that suffering was actually
just part of a larger experience associated with, and partly defines
my life. What I care about is what I came away with. I see in front
of me, many young individuals, who have to stop taking life for
granted, and realize that not everyone is as lucky as you or me, and
even if we may not be aware of it, there may be some in this
auditorium who are undergoing personal struggles beyond their
control. In fact, some of these struggles we have heard up here at
this podium. Above all else, we need to enjoy life as it is serving
us well right now. Quit thinking too much about some miraculous
future, think about now, and please enjoy it. Because I am, and
thank god that my experience has taught me that. As once said by
Sister Corita Kent: “Love the moment. Flowers grow out of dark
moments. Therefore, each moment is vital. It affects the whole. Life
is a succession of such moments and to live each, is to succeed.”
Thank
You.
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