From RandyPendleton.com (WayBack)
https://web.archive.org/web/20160330035029/http://randypendleton.com/autobio/
The dice slipped from my hand, landing on the game board, knocking a few Houses from their resting place. Each die clattered against one another upon impact, coming to an eventual stop several feet below my wary face. The โHorsemanโ pieceโmy preferred tokenโmoved clockwise, one space for each dot the dice displayed. Whereas my uncle seemed to relish the spot my metal game piece landed on, I was merely deflated. โBoardwalk,โ Dennis boasted. โPay up.โ
Abstruse as most realities of life are, Monopoly is among the most popular and well-known board game in the world. Iโm sure youโve spent at least one afternoon playing the game with family or friends. I havenโt touched a Monopoly board in years, yet I can ascertain that Iโve played it often as a child. Growing up in the 1990sโamong a generation of gangs, violence, and a youth-fueled cocktail of sex and drugsโI still found myself sitting in a group, โHorsemanโ at the ready and with an odious Uncle Dennis (and his obstinate insistence of controlling the โCarโ) by my side.
Maybe thatโs the framework of life: Everything being the roll of a die. Perhaps God knows every little aspect of oneโs life. A personโs past, present, and future might be written out in a massive book on His coffee table. Who knows? My uncle wasnโt a deity and didnโt believe in the notion of โre-rolls.โ But our oh-so-humble Lord isnโt as unforgiving as this oddball existence called life is. Itโs only after weโre given a new chance that we truly grasp the nature of things, items we only thought we had a grasp of. Iโm sitting in this comfy chair, typing these words out, because of the re-roll life had bestowed upon me. I didnโt have one shot at it. I was given numerous chances at this game, thisโฆ life. Iโve undergone one metamorphosis after another, thus Iโve changed a lot throughout the years. But Iโm here and moving on, albeit not in the way Iโve envisioned would ever be the case.
To be blunt: What people see in this shell is nothing like what was perceived in the 1990s; what lurched in the 90s wasnโt perceived to have been possible, at all.
Return of the Jedi tore up the box-office in 1983. Culture Club and Adam Ant terrorized the young society on radio and on the still-in-its-infancy MTV. And more to the point: A child was given birth to, with the assistance of a Caesarean, in the afternoon of February the first. As legend has it, the mother, Sheri Childers, was expecting her child to be birthed around the twenty-first but during one check-up, she fell into labor. Her little boy was delivered three weeks premature. The boy was then christened Randy Lee Childers. He was an ugly baby, born without hair despite having a mammoth head. Still, the baby was there, alive and well.
It died not long after.
My mom always called me a โSIDS baby.โ I wasnโt sure what she meant by it other than it somehow took my life. I only learned as an adult that SIDS is an acronym for Sudden Infant Death Syndrome. It wasnโt for long, but I clinically died after birth. I was resuscitatedโtwice, I thinkโbut still, that big-headed baby somehow lived to see another day. The year 1983 was my first. Somehow, that doesnโt seem strange to me. Peculiarly, it seems to make sense. Iโve admittedly grown up to be a vulgar, perverse character and seeing that 1983 had a then-record of R-rated movies released, it almost seems fitting that I came about when I had. The year was fated to be my last, too. But itโs something I donโt think of often. Thoughts like that can be a tad frightening.
Life, itself, can be more so. Nonchalance makes up my world. Iโm not partial to vanity, avarice, or most trivial thrills of random origins. Even petty celebrations, Iโm a stranger to. Iโm typically secluded and moderately introverted. I was a weird kid, a fact that Iโm proud of to this day. Yet still, I was sheltered a lot, enclosed in a self-imposed cocoon away from most of lifeโs little, unnecessary dramas and the social politics of public schools. My hearing had lessened as the years progressed, requiring hearing aides. That really hindered any real hope of a social life. My mom was alive at the time I was tested for hearing loss and for the subsequent appointments with audiologists in Athens, Ohio. Kids hate having glasses, and the resentment is justified by the way at which the wearer is teased by his peers. And here I was: A mere thirteen and I had hearing aides fitted discreetly in my ears. โWill my natural hearing get better if I use these?โ I asked my mom, knowing her answer before my question was ever spoken aloud. I didnโt wanna be the kid with hearing aides. My glasses were fodder enough for teasing, ya know. As much as I feel weird thinking of it, I kind of wish it was still that day, in 1996. On that day, at the least I had the defective hearing, encompassing the need for the devices. In 1996, I could hear.
Youโve probably heard the clichรฉ at least a thousand times: โWhen I learned about (insert peril here), it was like a bomb dropped on me.โ Sixteen years had passed since that whole, pesky SIDS thing. I was already going through my share of tribulation, having lost my mother to cancer two years earlier and riding my teenage-experimental wave of drug use. It was my sister and aunt who pointed out something that I knowingly should have looked into yet shunned. I had a lump on my face, along my right jawbone, and two smaller ones at other facial locations. โRandy, you should really get them checked out,โ the two told me. I downplayed it, saying it was nothing to worry about. I had no reasons to be alarmedโฆ
Actually, I didโwhether I wanted to accept it or not. My past medical dealings should have been taken into consideration by me. To make a long story short, a tumor developed on the middle segment of my right handโs middle finger. It was believed that my sister was the culprit, that she inadvertently caused massive swelling to the poor digit after a childhood incident. I grew tired of the dreaded thing and the controversy that surrounded it (a common occurrence was Child Services being notified of child neglect on my momโs part that supposedly resulted in the abnormal growth). Around mid June of 1996, a doctor examined my hand and more or less shrugged. โWellโฆ what am I supposed to do?โ That million-dollar question was not only anticipated but expected, as Iโve heard it or a variation of it for years by numerous medical experts. This time, I supplied the answer. My mom gave me such a startled look after I spoke up. โAre you sure?โ she asked. I explained my disdain for the stupid growth and my desire to rid of it, no matter my sacrifice. On July seventeenth of that year, I became a finger less.
It was a price I had to pay if I wanted to rid of it. See, the tumor was encased with a large bundle of nerves. The finger had been operated on once before. After seeing the severity of the situation, the finger was stitched back up without the tumorโs removal. I was told my finger would have been lifeless had the tumor been removed. I wanted to quell the harassment authorities spewed at my mom and well, the tumor annoyed me. My only option at that point to succeed in removing both disturbances was to have the finger hacked off, as it was. We now know what the true culprit was but that didnโt stop Traci, in her youth, from reoccurring nightmare of guilt, guilt she shouldnโt have had.
* * *
The public library, in my hometown of Wellston, Ohio, had an unusual visitor. I made an appearance there time and time again, to use the libraryโs computers for โsurfingโ that peculiarity referred to at the time as the World Wide Web. This time, possibly around May of 1999, there was a much different reason than looking up information on Ozzy Osbourne, as was my typical. I had a date with an audiologist not long before. According to Paula, my aforementioned aunt and Dennisโ sister, a tumor was found in my head during an examination of my eardrums. That, mixed in with the facial lumps and the tumor on my long-removed finger brought up questions. I was sent to a local doctor, where a piece of tumor was removed from my left leg and sent to Columbus, Ohio to be analyzed. โIt looks like neurofibromatosis, type two,โ I was told by the local doc. โNF2.โ
I didnโt know exactly how to pronounce it, let alone spell it. That didnโt deter me from my search for edification. I knew something was wrong. โThe world feels like itโs spinning around me,โ my mom was known for saying. Itโs a condition known as vertigo. And like her, I had a severe case of my own. My thoughts were colorful but not veryโฆ nice. Iโve had visions too unspeakable of and scenarios playing through my head that the โnormalโ person would never believe. I knew there was a problem; I simply couldnโt affix a name to it. From that dayโwith the biopsy and subsequent library visitโI gave myself a label, one Iโve carried for weeks following it. I dubbed myself, simply, defeated.
Death truly has its way of causing one to reassess his life. Being at a much younger age, Iโd listen to music in bed, lying perfectly still. Iโd daydream of being that vocalist. I wanted to be that Ozzy, that James Hetfieldโฆ Blackie Lawless, maybeโฆ standing before tens of thousands of screaming fansโฆ It wasnโt until I was around the age of thirteen that I stopped to ask myself: Why am I dreaming of this? I was still relatively young, I rationalized. Why dream it when I could go out and actually do it? Writing was an almost-as-big thing to me. Not to be arrogant but Iโve had teachers as far into my past as the
third grade to praise my writing and imagination. Iโve wanted to write a novel since I was a minuscule six year old. Again, I was young, going through that annoying puberty thing. I had ambition. I had drive. And yes, I had talent. Yet I was slipping away. I felt myself digressing in mind and body. Throughout 1999, a doctorโs office became my second home. No one would tell me, but I knew it: I was dying.
At least in my mind, I thought that I was. One day, while driving about up in Columbus with Paula, I pivoted my head ninety degrees and ask the only thing that was on my mind: โAm I dying?โ Suffice to say, she was livid. I was only fourteen when she and I witnessed my mother being interred. Two years later, I had this sickening feeling that I was on the verge of my own destruction. You see, this is far more common than you might think. Being told one has a disease or genetic disorder encompasses irrationality and fear. It wasnโt just me: The mere thought of having a medical trauma feels as though you were handed a death sentence. It brings about numerous questioning and contemplations. โWhy was I targeted? What did I do wrong? Am I being punished for past atrocities? Will this end me? Am I gonna die?โ These are thoughts no one should ever have to mull. Granted, when youโre given the โdeath sentenceโ of a disease and/or disorder, imaginations runs rampantโฆ and the roads taken by it can lead to troubling waters.
It is in human nature to fear what one doesnโt understand. Some of the above questions arenโt difficult to answer on your own. Are you gonna die? Sure you will, some day. Weโll all meet our Maker at some point. But that doesnโt mean we disease-or-disorder-stricken individuals will succumb to our ailments. Itโs true that those born with cancer may wind up dying from it, but having cancer doesnโt mean that itโll eventually kill you. Iโve heard of many people seeing the age of sixty and not fall to their disease. The same applies with NF2. The word โneurofibromatosisโ isnโt medical lingo for โWrite a will soon and cherish your final days.โ Neurofibromatosis isnโt a death sentence, at all. In essence, itโs only a speed-bump in an otherwise normal life.
The other questions are open to interpretation. Maybe we are being punished by someone, somewhere, with our conditions. I personally donโt feel as though God is responsible. Things happen; He simply watches on to see how everything goes. One of those โthingsโ is neurofibromatosis. NF2 is a non-contagious disorder, striking its victims at birth. It cannot be contracted or spread in the same way as the HIV virus. We are inflicted with it through gene mutations or from parental inheritance. In my case, I was the unwitting victim of a gene mutation. And Iโm not talking about a comic-book gene mutation. Itโd be pretty awesome to have the ability of controlling metal or manipulating fire, yet NF2 only entails the growth of tumors pretty much anywhere throughout oneโs entire body. Whatever the cause or purpose of it is, if there is one at all, people with NF2 have NF2. Itโs not a cool gene mutation to have. Stan Lee wouldnโt like it.
Like I said though, the realization of having a condition is crippling, no matter how destructive the condition itself really is. And from personal experience, the
what-ifโs only get worse. July was hard on me, both physically and mentally. I was given an official diagnosis, necessitating a lot of clinical work. My hearing was dangerously low. The disturbing thoughts grew only the more obscene. I knew there was a tumor in my head that was gonna be surgically removed later in the month. The uhโฆ specifics, I wasnโt aware of at the time. It wasnโt a small tumor. In actuality, the one removed was rather large, about golf-ball size. Is SIDS responsible? Beats me. Iโm just speculating. Still, that tumor was there, pressing against my brain stem. If nothing else, that explained why I felt like I was literally going insane. It shined light on my right earโs hearing loss, too. Even with a hearing aid, there wasnโt much left that the ear could process. As its natural hearing was likely under ninety percent, I wrote the ear off as deaf and abandoned that earโs hearing aid. It seemed logical to me.
My options were little. Had I not undergone surgery, 1999 would have truly been my last. June the twenty-sixth approached me somewhat silently. I was about to have surgery. Iโd be operated on, bed-ridden for awhile, and would lose the remaining hearing in my right ear. Funnily, I didnโt see the severity of the procedure. I saw a diagram of what was to be done with my ear. Having it sliced about half-way off was unsettling, though now I donโt think Iโd have minded pulling a Mick Foley and going ear-less; These days, my ears are more or less decoration. I knew little else of the procedure: Remove the tumor, stitch my head up, and recuperate. Iโve had enough operations to tell youโฆ the less you know about whatโs being done in a medical procedure is the better off youโll be. The 1996 operation was simplistic enough. I entered the hospital in mid-morning and left later in the evening. It seemed trivial enough to remove a tumor from within this big head of mine.
โI gotta go, man,โ I said to my brother on the day before it all went down. Remembering the short hospital stay of the โ96 plastic surgery, I followed that with what seemed the most accurate at the time. โSee ya in a few days.โ
Thatโs unrealism for ya. I actually thought it was gonna be a short, quick ordeal. Even worse is the fact that I didnโt know how life-altering the whole experience would be. As the case is for many people with NF2, the tumor was located directly on my auditory nerve. Meaning? In order for the tumor to be removed, the nerveโand that earโs hearingโhad to go with it. To this day, I donโt miss it. My right ear was never too good at its job, anyway. But โa few daysโ was an uneducated pipedream. This wasnโt a digit-removal affair. It wasnโt a handful-of-hours thing. In all, I was under the knife for approximately nineteen hours, thirty minutes. The operation was only the beginning, an interlude for all that was to come. I was kept sedated for several daysโpossibly a week. And then, the real fun started.
Rheumatism comes into play with most extensive operations. That, hospitalization, therapy: Itโs all a package deal. For a few weeks, my routine was pretty much the same. I was on the first floor of Dodd Hall, at the Ohio State University Medical Center, every morning, peddling away on exercise bikes or partaking in personal-or-group therapy sessions. Daily, Iโd lie in my bed, dreaming of outside life, dreaming of what my world was to be like upon my discharge. Paula visited me every other day. That was the only thing I had to look forward toโฆ that and starting the next chapter of my life. I look back on that summer as the worst point Iโve ever endured. There was too much uncertainty, too much unrest. I was told during a session of speech therapy one day that my discharge was imminent. I felt much relief at the news yet it scared me, too. I was to leave and start afresh; I was still mulling the simple question: How? Physically better, removed from problematic thoughts and most associated issues I once carried from the tumor, I was officially discharged on July the twenty-seventh, nearly a month after neurosurgery. It was time to move on, time to close that melancholic chapter and start the next, with aims of making that one more tolerable. That big-headed baby dodged a second bullet.
* * *
Itโs been over three decades that Iโve occupied this body, moving on from one adventure to the next. Four months removed from that mid-1999 operation, I had a subsequent one on the other auditory nerve. Yeah, youโve guessed it: My left ear had been drained of hearing, and deafness settled in afterward. Iโve had many operations in my life, so many that I couldnโt tell you the figure from the top of my head; if I were to guess, Iโd say eleven or twelve, ranging from simple biopsies to Whipple surgery. In the past seven years, Iโve written two novels, lived in seven different cities, and dodged a third bulletโa friend present with me at the time of the accident wasnโt as fortunate with avoiding it. Iโve dated my share and was engaged at a point. My life these days is nonchalant and mostly uneventful. Believe me: after all the hoops Iโve been jumping through in my life, itโs really nice to have some simplicity.
Through it all, NF2โs been right there, hogging the passengerโs seat and more times than Iโm happy about, taking up the driverโs seat itself and navigating rather zigzagged down the highway of life. My ability to concentrate isnโt as great these days. Mobility isnโt the greatest, either. I have a very instable gait, necessitating usage of a cane. I am perfectly deaf, still. Factoring those tidbits in with a crippled right hand & facial paralysis and youโve got one disappointed man. Yeah, Iโm disappointed at how my life turned out, kinda. I suppose considering I wasnโt meant to see the year 1984โlet alone the twenty-first centuryโthings arenโt that bad. Itโd have been disheartening and cruel for an angel to pop up in 1983 and say unto me, โYouโve made it two minutes. Eh, youโve had a good run.โ I tend to look at birthdays in a different light nowadays. It is simply โjust another numberโ to most. Itโs kind of a privilege to me. Everyone has a one-hundredth birthday, after all; most of us never live long enough to celebrate it. Itโs best to cherish what you have when you have it.
Recently, Iโve been considering whatโs known as an auditory brainstem implant, ABI for short. Itโs a lovely procedure for us deaffies, aimed at restoring partial hearing. There is a lotta technical stuff involved with it, things outside the scope of this story. If youโre deaf from complications of NF2, you might want to look into it, too. It requires surgical work, an idea that Iโm not too keen on. If it works, I wonโt complain. I want some hearing restored, yes. But I donโt want to have to undergo surgery. This statement can easily stretch back further. After all, I didnโt want to have a tumor jerked off my spine or to have pancreatic cancer cut outta me or have a finger removed. In most cases, such as the spinal tumor, it was literally do-or-die. Had I sat back and refused surgery, wellโฆ use your imagination. The idea of more surgery is unsettling. This time, though, it wouldnโt be a requirement for sustaining life. If I have this done, itโll beโjust like with my fingerโon my own terms. The fact, however, remains that itโd be done solely to give me back a little normalcy. Itโd simply be another price Iโll have to pay.
Dice-rolling is one of the quirky things we all have to do at some point or another. Sometimes youโll reap rewards; others, youโll be stuck on another personโs Boardwalk, giving away possessions merely to keep ya afloat. As the French would say,
cโest la vie or otherwise, thatโs life. No one ever said life is fair. It knows no mercy or compassion. It doesnโt play favorites, either. There is no discrimination with it. Unlike us
homo sapiens, life cares none for your wealth, sexuality, gender, or nationality. It hasnโt a care if youโre homosexual or worship God, Lucifer, or a totem pole. Life offers the same end-result to us all: the promise of death. You live. You die. Cโest la vie. What can ya do about it?
Answer: Live it. With NF2, youโll have hardships and obstacles to overcome. But donโt we all? Worrying about fate only makes us stop living our life. It takes focus off the here-and-now. With a medical condition, we tend to forget what life is, and our heads fill themselves with grotesque thoughts and all this macabre of what we believe is to come. This existence is shared by us all; life, on the other hand, is more of a fingerprint. No two lives are the same. You may lose your hearing, as that is a characteristic many people with NF2 share. You may wind up getting it worse than I had. Or maybe better. Each and every life is on a per-case basis. How we end up is anyoneโs guess. Yeah, Iโve had it bad and itโll likely get worse down the road. I assure you, thought, that your life wonโt become a replication of mine. I lost a finger. That doesnโt mean every NF2 patient will. Letting the uncertainties of the future consume you will serve no purpose and only distracts you from whatโs important. Donโt think of what the future holds. If youโre reading this, then that means youโre still here, on this little thing called earth. You have life. Simply put, just live it and move on.
Disability is never fun. Itโs taken away many of my dreams. Fortunately, I still have others, and Iโm not letting things get to me. Okay, so Iโm not gonna be that Ozzy singing and making albums. I can live with that. In fact, I am. Lest we forget I have two novels to ready up for the world to read, with a third on the way. My mind is oftentimes occupied with projects I wanna do. I donโt dwell on having this disorder. Itโs not the focus of my world. Iโm getting places, slowly yet surely. Plus I have a beautiful niece. Yeah, Iโm an uncle, myself. There are bad and good things in my little world. The latter is the focal point of who I am. NF2 is in the front of the car; the bad things associated with it are as far in the back as I can get them. My condition doesnโt define me. NF2 shouldnโt be an identifier to anyone.
The world can be a scary place. Itโs scarier when things come about that ya donโt understand. My eyes opened. I saw everything clearly, more so than I had prior to 1999. There is a new outlook I have to what my lifeโand life, in generalโis. Iโm trying to make the best of it. Neurofibromatosis is a hiccup, one that might follow me forever. All in all, I was given this re-roll. And you better believe Iโm gonna make the most with what I can. I want to do many things with myself. Who knows? I might win a Pulitzer someday if I try hard enough. Iโm a coarse, vulgar guy. But I am who I am. Iโll try my hand at things. Yes, Iโll succeed at certain endeavors and the same, I know that Iโll fail at some. The mind of the now-christened Randy Pendleton is focused on living, not dying. What shall become of me, I canโt speculate. But I still have my dreams and believe me, Iโm gonna keep those dreams alive.
Originally written as Re-rolls, Ambitions, and a Life Less Ordinary
Copyright ยฉ 2012 Randy L. Pendleton, all rights reserved
Written on January 4th 2012
Revised March 3rd, 2014
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Peace,
kid5150