Thirteen

The number thirteen has a bad rap.  It is the number that comes after twelve and before fourteen, ten plus three, twenty minus seven and so on.  There are buildings that actually skip the thirteenth floor, seriously do they think the people on the fourteenth floor are fooled? For me the number thirteen signifies much more than just a number it was the year that changed my life.  At the time I had no idea how much that year would set the course of my life, the path I couldn’t stray from, my destiny.  The only option I had was how I chose to behave on the path.  I could stomp and break bricks or I could go with the flow but probably miss out on so many good things that have happened in my life.  As I think of it with my parents there was no choice I had to knock holes in the bricks or I wouldn’t hear the end of it.

It was my freshman year of high school an already awkward, uncertain, and hormonal time or so I thought.  My brother, Mr. Popular was a senior causing the upper classman either to ignore me or want to talk to me in order to get closer to my brother, especially the girls.  If they had any clue how my brother didn’t listen to a word I said they probably would have tortured me just like all the other freshman meat.  So, thank you “B”, see you have done something for me that didn’t scar me for life.

The school was really big I got lost so many times and it was only the first week.  The second week started and that’s where everything changed.  The walls seemed to move and the stairs looked and felt like an escalator.  I spent my lunch period in the stairwell at the end of the hall that no one used.  The smell of the food and the bright lights in the cafeteria bothered me and made me feel sick.  At first I thought it was my nerves since I was stressed about finding my classes, getting to them on time and not making a fool out of myself.  My English teacher quietly nudged me at the end of the period to tell me it was time to leave which I didn’t know since I had slept through the entire class and didn’t hear the blaring bells ring.  It took a few seconds to realize what had transpired, where I was and how I could save myself from getting sent to the deans office.  Before I could speak my teacher asked if I was feeling sick he was kind and empathetic.  He told me to get moving or I would be late for my next class which I had no clue which period it was or where I had to go.  Forced to ask him what period was approaching instead of telling me he wrote a note to the clinic. I must have looked perplexed because he asked a student from his next class to walk me.  I have no recollection of the journey or the rest of the day I only remember being escorted to the bus and some kids at my stop yelling for me to get off.  When I arrived home I laid down in the dark and slept straight through dinner.  The next few days were a blur in fact the only thing I remember was yelling at my family for making any noise or using the lights.  I had zero tolerance for my fathers and brothers deep voices that made my entire body vibrate down to my bones.

This is when doctor appointments went from just routine to daily. Frustrated because I was becoming worse and seriously so with doctor after doctor not figuring out what was wrong with me I began feeling hopeless.  Some of my biggest complaints were extreme light sensitivity, pounding headaches, blurry and double vision, including ringing in my ears. With no answers thus far the eye doctor was next up. My father and I entered the office on a Friday afternoon around 3:30.  The doctor looked in my eyes, asked for me to complete a visual fields exam, put drops after drops in my eyes and 2 and 1/2 hours later knocked both of us on our asses.  “Get Stacey to the hospital immediately, she is in extreme danger of losing her vision.” He was such a kind man that he stayed past what his religion allowed because he wanted to make sure he was certain and that I received the care I needed.  My dad and him spoke more since it wasn’t something in my condition I was grasping my head around.  All I wanted to do was go back to sleep in a dark room. Hibernating bears suddenly became familiar since I began to act like one.  Once at home my parents began packing up while I attempted to escape any which way I could. I was terribly afraid of hospitals and needles.

The next few weeks were all the same doctors, nurses, and 4:30 pm spinal taps every other day.  The spinal taps were supposed to relieve the pressure from my optic nerves in order to save my eyesight. Just knowing that I could count down to the next gigantic needle that was going to be stuck into my spine was terrifying.  This was not how I imagined my freshman year of high school would be. I was  diagnosed with pseudo tumor cerebri benign intracranial hypertension it has since been shortened to intracranial hypertension. For the next 27 years I would have the conditioned controlled through medications, spinal taps and my quick reaction to get to the doctor.  Each time my condition spun out of control I was fortunate to retain most of my vision once the swelling reduced.  I was lucky which my family and I knew may not always be the case.  Still I went to college, got married, loved my career, got divorced, adopted a child, and had a great family. In 2007 I rapidly began losing my sight and needed my mother to help guide me around we knew that if the pressure in my brain didn’t get under control and soon I may lose my sight permanently and worse.  That is when I agreed to have brain surgery allowing the neurosurgeon to implant a programmable shunt with tubes throughout half my body.  There was no other option for me at this point my back had too much scar tissue from all the years of spinal taps and the medications were only causing more problems.  On July 5th, 2007 I had my very long hair shaved and my skull drilled into allowing a geyser of spinal fluid to escape relieving the enormous amount of pressure on my optic nerves and brain. Later that day I woke up and saw my doctor for the first time.  The next almost 5 years were great I had a few spikes that were controlled with adjusting the shunt and without having to cut me open once more.

February in Florida is beautiful not humid and the sun shines however it doesn’t beat down on you uncomfortably.  In 2012 I woke up to greet the day except I did it without my eyesight.  Trying to keep myself together I contacted a friend to help get my son to school since I worked at the school we normally drove in together so he needed a ride and so did I but to the doctor. The doctor had me come in immediately and confirmed my worst fears that my illness finally took my vision.  We still attempted to open the shunt, add medications, subject me to spinal taps without making a difference. My world no longer looked the same.  Now what?  I would soon make my way in life even without my vision.

Stacey

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