My first night and post surgery at the hospital was terrifying to say the very least. Having my vital signs checked every hour on the hour throughout the night left little to no time for sleep. To make matters worse, I was in constant pain and felt a an enormous amount of discomfort due to the restraints of being hooked up to tubes and plugged into an intravenous.
I’ve found the doctors and nurses here to be very patient and understanding. Their heartfelt dedication to making the kids here as comfortable as possible can not be overlooked. Although I’m just another scared kid in here. I feel that just about everything has been explained to me in a way I can understand without sounding the least bit condescending. Something I greatly appreciate. Especially considering how scary this has all been.
My second day here had a specialist they flew in from Canada (I feel so important.) perform what he described as “Plumbing on the brain.” Being that the tumor is so large and cannot be removed. They instead inserted a shunt, which would be best described as a giant straw that sucks the juices from the tumor and flushes them through and out of my abdominal cavity. (Swoosh!) They only shaved one side of my head for the operation and though my grandmother suggested a comb over. My mother insisted that the other side be cut or shaved. I look like a fucking bowling ball now.
After some recovery time, I had my intravenous taken out which allowed me to explore the floor, it’s unit and some of the unique characters I’ll be spending my time here with. More about them later, as they each deserve further, detail and description. The food here, as imagined, is awful. If you came here healthy and ate the food. You’d most likely leave on a stretcher. The meals are scheduled and depending on what you’re here for. Are planned and chosen for you. Due to the fact that a brain tumor doesn’t call for any strict diet. I tend to choose the hamburgers that closely resemble and taste like hockey pucks. (Not that I’ve made it a habit to feast on hockey pucks in the past.) Luckily, whenever someone plans to visit and asks if I need anything. I answer convincingly with “Kentucky Fried Chicken, McDonalds” or any other fast food franchise within blocks of the hospital. Whatever medication they’re giving me is making me very hungry.
(Stay tuned for parts IV and V) Coming Soon.
When I called my Mother this morning. In a somewhat puzzled state of mind, She asked me for my address. Being that I’ve told her countless times before and included it with the cards, letters and various mail related items I’ve sent her. I was puzzled as to why she was asking me again. “I your address &#$^@?” she asked.”Yes, that is my address.” “Well, I’m so pissed. The post office returned my package.” I knew the reason, before she could even speak. As this has happened several times since my wife and me moved to Seattle. “Did you include the apartment number?” The one I’ve instructed you to always include?” “No, don’t they know you live there by now?” Now, I recall reminding her to do so more than a half a dozen times now, to no avail. However, my dismay or anger had nothing to do with her forgetting mildly important things.
My anger stems from the fact that I started insisting she stop sending me these packages back in 1994. Again, to no avail. Now,when you think about it. That’s almost twenty five years of unwanted, unsolicited packages. Items she’s purchased at places like K-Mart, Wall-Mart and other big box stores I myself, refuse to enter. knowing full well that any chosen package will contain items I will either have to throw out, pass on to someone who most likely think I’m nuts, or find room to store. Each box, envelope or package sent includes a unintentional amount of anxiety. The kind that comes with having things you don’t want or need thrust upon you. Not to mention, the inevitable phone call asking, “Did you get it?” “What did you think?” In the end, I don’t want to be surrounded by things I don’t need or one’s I can’t get rid of without the guilt associated with discarding items gifted by loved one.
My wife and I recently deiced to take one weekend day (usually Sunday) to stay somewhat local and dedicate part of the day to study,. (Or in my case, write.) Over time it’s come to be a ritual I enjoy and even look forward to. Going out for breakfast before seeking out a library, book store or cafe/coffee house to settle in and get some extra work done. Being that I’ve always been and still am inspired by photography. I often find myself thinking as one and wanting to capture a moment. Since moving to Seattle I’ve taken my share of sunsets but often miss the industrial surroundings of the Jersey City condo we so cherished. Finding ourselves at a SODO coffee shop late this afternoon. I was able to patiently wait in my comfortable seat as the sun began to set over the areas industrial backdrop. As the Fall quickly becomes Winter and the days get shorter. My chances to watch the sun disappear will multiply. Still, watching sun set and that glowing orange color overpowering a once blue sky incites child like awe.
We were just finishing up our breakfast at a local Denny’s when I saw what would have made for a cool image. Not wanting to seem intrusive, I took a quick shot as we headed towards the exit with the intention of doing whatever editing was needed later. Just a couple of hours later as I was enjoying a cup of coffee with my wife. As I sat there enjoying my cup of joe and admiring a pretty cool capture. My wife burst my bubble by sharing a very similar image featured on the cover Seasick Steve’s “Can You Cook?” Though I had never heard of the artist or seen the relatively new album. I couldn’t help but feel that the rug had been pulled out from me I even wondered aloud if the picture was taken at the same location. And while I’ll stop short of posting the album cover. I’ll readily admit that my love of this image took a major nose dive after seeing something so incredibly similar. Oh well.
As I sit here in the coffee shop I can’t help but feel overwhelmed by the combination of Seahawks fans stopping off for a drink before heading to Sunday’s big game and ever present population of homeless who use the shop for their bathroom visits and to charge up their electronic devises. One who took up four tables while doing so. Things I’ve come to both expect and accept as a coffee loving, coffee house freak. Having grown up in what could be considered as a suburb of New York City. (Jackson Heights, Queens to be exact and having lived in a section of Manhattan once known as Hell’s Kitchen. I’ve been used to feeling quite comfortable living within very varied surroundings. However, it wasn’t until I began traveling extensively, especially the country and farms. For it was on those trips and excursions that I found my true peace and happiness. So much so that, years after my move to New Jersey. I found myself opting for weekend trips to upstate towns and farms more then the possibility of hopping a train or a bus to the city. Having enjoyed both in my lifetime. I would never judge or criticize anyone for the lifestyle they choose. I’ve experienced both at different times in my life and both have provided countless rewards and lessons. I just feel that after a lifetime of city life. I might be opening up to something different. For now, my little weekend getaways are the perfect balance I’m looking for.
Just for the hell of it. I decided to revisit twelve year old me and rewrite the article I mentioned in my last post “Unfinished Business” What I wrote below was taken from the school newspaper article I mentioned, a journal I kept at the time as well as memories that still remain fresh all these years later.
Several weeks ago, I began experiencing severe headaches. It all started during school hours and became such a distraction that I was often excused to go down to the Principals office to request they call home to have someone pick up and take me home. Being that I’ve built somewhat of a reputation as a trouble maker. I was initially scolded and told to stop slacking off and get my ass back to class. Days passed and as the headaches became more sever, my trips to the principals office increased. Despite all of the warning signs, health concerns took a back seat and I was sent to see a school shrink. I was asked questions like “Is there anything or anyone bothering you?” “Is everything okay at home?” You know, text book questions one would ask. “No, man. I’m just experiencing crippling headaches. Can I go home now?”
Within a couple of days I was in a doctors office. His assertion was I had been experiencing intense migraine headaches. Something that could easily be tamed by medication, which he described. In the days that followed, my condition worsened, I wasn’t making it to school and due to my parents conflicting work schedules. I was staying with my grandmother. By then. I was not capable of eating and could not handle any light, whatsoever. I vividly recall the overpowering light that emanated from my grandmothers 12′ inch B&W TV being more than my eyes could take. Quickly, (I’m talking about a matter of days.) I began hallucinating. (Here was this kid who sucked at fifth grade Math hallucinating ratios most kids don’t know of until grad school,) That’s when I remember being taken to the emergency room.
Upon arrival, I remember being taken in pretty quickly. (No three hour wait to have his temperature taken, given a few aspirin before being sent home with a bill resembling a school loan for this kid.) A CAT scan taken that night revealed a rather large pineal tumor on the middle of my brain. From there I was quickly admitted to the hospital where I had emergency surgery that was meant to keep me alive. Though I was not told at the time, my parents were gently told to make funeral arrangements. The date was October 11th and by all projections, I would be dead before I got to enjoy Thanksgiving dinner….
To be continued…or not.
As I was going through a couple of file boxes containing old tax returns and medical records. I came across a copy of the school newspaper that featured the article they asked me to write about my experiences and observations of my days, weeks and months as a terminal inpatient at an uptown Manhattan hospital.
Though I was unaware that the school even had a student based newspaper at the time. I agreed and proceeded to pour my heart out about the most trying and challenging experience I had been through in my somewhat short life. After penning and handing it off to visiting teacher. It was delivered to the forces that be and sent to the newspapers staff to be printed and distributed.
Imagine my shock when upon delivery when I realized that my words were not only edited, but rewritten to fit in with the dogma our schools faculty were forced to teach.
While I’m pretty sure my 7th grade English could benefit from a little grammarly love. But having what was being interpreted as my own words, twisted and fabricated to describe my recovery as a result of prayer, faith and God’s mercy. It would seem or be suggested that my becoming ill was part of God’s will to make me a stronger, better Christian. An act on their part was a fabrication and flat out lie. I had no idea the sisters, priests or clergy would go as far as committing libel to spread their message of fear, control and suppression of free speech or thought. While it wasn’t the first time the school or church committed one of the many sins they instructed us to abstain from and swiftly punished us for acting out. It found their avenue of doing so, rather tasteless.
Looking back, it’s hard to remember exactly why I didn’t take my case up with the schools principle, Sister Mary Patrick, or even threaten to take them to court. Maybe it had something to do with the fear of retribution on the schools part. Perhaps being just twelve years old trying to survive a terminal prognosis brought on by a non operable brain tumor. I don’t know why such a predictable action on the part of those put in charge of indoctrinating so many young minds to believe in half truths, fairy tales and flat out lies would warrant one’s anger, but it did.