Inspiring words from a wonderful and selfless man...

"I want to make NF well known all over the world. I want to take it to every country that's willing to listen." - Reggie Bibbs

Re-rolls, Ambitions & A Life Less Ordinary

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 “Horseman” piece--the one I always preferred--moved clockwise, once space for each dot that the dice displayed. Whereas my uncle seemed to relish the spot that my metal game piece landed on, I was merely deflated. “Boardwalk,” Dennis boasted. “Pay up.”

Abstruse as most realities of life are, Monopoly is the most popular and well-known board game in the world. I’m sure you’ve spent at least one afternoon playing the game with family or friends. I haven’t touched a Monopoly board in years yet I can ascertain that I’ve played it often as a child. Growing up in the 1990s, among a generation of gangs, violence, and a youth-fueled cocktail of sex and drugs, I still found myself sitting in a group, “Horseman” at the ready and with an odious Uncle Dennis (and his obstinate insistence of controlling the “Car”) by my side.

Maybe that’s the framework of life: Everything being the roll of a die. Perhaps God knows every little aspect of one’s life. A person’s past, present, and future might be written out in a massive book on His coffee table. Who knows? My uncle wasn’t a deity and didn’t believe in the notion of “re-rolls” (or God himself, to be perfectly honest). But our oh-so-humble Lord isn’t as unforgiving as this oddball existence called life--or a self-centered uncle--is. It’s only after we’re given a new chance that we truly grasp the nature of things of which we only thought we had a grasp of. I’m sitting in this comfy chair, typing these words out, because of the re-roll life had bestowed upon me. I didn’t have one shot at it. I was given numerous chances at this game, this... life. I’ve undergone one metamorphosis after another, thus I’ve changed a lot throughout the years. But I’m here and moving on, albeit not in the way that I’ve 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 wasn’t 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 the 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 and the 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 SIDS baby. I wasn’t 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 wasn’t for long but I clinically died after birth. I was resuscitated--twice, I think--but still, that big-headed baby somehow lived to see another day. The year 1983 was my first. Somehow, that doesn’t seem strange to me. Peculiarly, it seems to make sense. I’ve 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 it’s something I don’t think of often. Thoughts like that can be a tad frightening.

Life, itself, can be more so. Nonchalance makes up my world. I’m not partial to vanity, avarice, or most trivial thrills of random origins. Even petty celebrations, I’m a stranger to. I’m typically secluded and moderately introverted. I was a weird kid, a fact that I’m proud of to this day. Yet still, I was sheltered a lot, enclosed in a self-imposed cocoon away from most of life’s little, unnecessary dramas and the social politics of high-school. 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. “Will my natural hearing get better if I use these?” I asked my mom, knowing her answer before my question was ever spoken aloud. I didn’t 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.

You’ve probably heard the cliché at least a thousand times: “When I learned about (insert peril here), it was like a bomb dropped on me.” 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. “Randy, you should really get them checked out,” the two told me. I downplayed it, saying it was nothing to worry about. I had no reasons to be alarmed...

Actually, I did, whether 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 hand’s 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 for Child Services being notified of child neglect on my mom’s part that supposedly resulted in the abnormal growth). Around mid June of 1996, a doctor examined my hand and more or less shrugged. “Well... what am I supposed to do?” That million-dollar question was not only anticipated but expected, as I’ve 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. “Are you sure?” 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 tumor’s 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 didn’t stop Traci, in her youth, from reoccurring nightmare of guilt, guilt she shouldn’t have had.

* * *

The public library, in my hometown of Wellston, Ohio, had an unusual visitor. I made an appearance time and time again, to use the library’s computers for “surfing” that peculiarity that was 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 Dennis’ 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. “It looks like neurofibromatosis, type two,” I was told by the local doc. “NF2.”

I didn’t know exactly how to pronounce it, let alone spell it. That didn’t prevent me from my search for edification. I knew something was wrong. “The world feels like it’s spinning around me,” my mom was known for saying. It’s a condition known as vertigo. And like her, I had a severe case of my own. My thoughts were colorful but not very... nice. I’ve had visions too unspeakable of and scenarios playing through my head that the “normal” person would never believe. I knew there was a problem; I simply couldn’t affix a name for it. From that day--with the biopsy and subsequent library visit--I gave myself a label, one I’ve 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, I’d listen to music in bed, lying perfectly still. I’d daydream of being that vocalist. I wanted to be that Ozzy, that James Hetfield... Blackie Lawless, maybe... standing before tens of thousands of screaming fans... it wasn’t 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 I’ve had teachers as far into my past as the third grade to praise my writing and imagination. I’ve 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 doctor’s 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: “Am I dying?” 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 that one has a disease encompasses irrationality and fear. It wasn’t just me: the mere thought of having a disease feels as though you were handed a death sentence. It brings about numerous questioning and contemplations. “Why was I targeted? What did I do wrong? Am I being punished for past atrocities? Will this end me? Am I gonna die?” These are thoughts that no one should ever have to mull. Granted, when you’re given the “death sentence” of a disease, imaginations runs rampant... and the roads taken by it can lead to troubling waters.

It is in human nature to fear what one doesn’t understand. Some of the above questions aren’t difficult to answer on your own. Are you gonna die? Sure you will, some day. We’ll all meet our Maker at some point. But that doesn’t mean we disease-stricken individuals will succumb to our ailments. It’s true that those born with cancer may wind up dying from it but having cancer doesn’t mean that it’ll eventually kill you. I’ve heard of many people seeing the age of sixty and not fall to their disease. The same applies with NF2. The word “neurofibromatosis” isn’t medical lingo for “Write a will soon and cherish your final days.” Neurofibromatosis isn’t a death sentence, at all. No disease is. In essence, it’s only a speed-bump in an otherwise normal life.

The other questions are open to interpretations. Maybe we are being punished by someone, somewhere, for our conditions. I personally don’t feel as though God is responsible. Things happen; He simply watches on to see how everything goes. One of those “things” is neurofibromatosis. NF2 is a non-contagious disease. It cannot be contracted or spread in the same way as the HIV virus can. We are inflicted with it through gene mutations or from parental inheritance. In my case, I was the unwelcoming victim of a gene mutation. And I’m not talking about a comic-book gene mutation. It’d be pretty awesome to have the ability of controlling metal or manipulating fire yet NF2 only entails the growth of tumors pretty much throughout one’s entire body. Whatever the cause or purpose of it, if there is one at all, people with NF2 have NF2. It’s not a cool gene mutation to have. Stan Lee wouldn’t like it.

Like I said though, the realization of having a disease is crippling, no matter how destructive the disease itself really is. And from personal experience, the what-if’s 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 uh... specifics, I wasn’t aware of at the time. It wasn’t a small tumor. In actuality, the one removed was rather large, about golf-ball size. Is SIDS responsible? Beats me. I’m 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 ear’s hearing loss, too. Even with a hearing aid, there wasn’t 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 ear’s 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. I’d be operated on, bed-ridden for awhile, and would lose the remaining hearing in my right ear. Funnily, I didn’t 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 don’t think I’d 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. I’ve had enough operations to tell you... the less you know about what’s being done in a medical procedure is the better off you’ll 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.

“I gotta go, man,” I said to my brother on the day before it all went down. Remembering the short hospital stay of the ‘96 plastic surgery, I followed that with what seemed the most accurate at the time. “See ya in a few days.”

That’s unrealism for ya. I actually thought it was gonna be a short, quick ordeal. Even worse is the fact that I didn’t 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 nerve--and that ear’s hearing--had to go with it. To this day, I don’t miss it. My right ear was never too good at its job, anyway. But “a few days” was an uneducated pipedream. This wasn’t a digit-removal affair. It wasn’t 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 days--possibly a week. And then, the real fun started.

Rheumatism comes into play with most extensive operations. That, hospitalization, therapy: It’s 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 OSU Medical Center, every morning, peddling away on exercise bikes or partaking in personal-or-group therapy sessions. Daily, I’ve lied in my bed, dreaming of outside life, in wistfulness, 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 to... that and starting the next chapter of my life. I look back on that summer as the worst point I’ve 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.

* * *

Here I sit, alone aside from my thoughts and a cat that antagonizes me daily, demanding to be pet. It’s been almost three decades that I’ve 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, you’ve guessed it: my left year had been drained of hearing and deafness settled in afterward. I’ve had many operations in my life, so many that I couldn’t tell you the figure from the top of my head; if I were to guess, I’d say ten or eleven, ranging from simple biopsies to Whipple surgery. In the past five years, I’ve written two novels, lived in seven different cities, and dodged a third bullet, one that a friend present with me wasn’t as fortunate with avoiding. I’ve dated my share and was engaged at a point. My life these days is nonchalant and mostly non-eventful. Believe me: After all the hoops I’ve been jumping through in my life, it’s really nice to have some simplicity.

Through it all, NF2’s been right there, hogging the driver’s seat and more times than I’m happy about, taking up the driver’s seat itself and navigating rather zigzagged down the highway of life. My ability to concentrate isn’t as great these days. Mobility isn’t 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 you’ve got one disappointed man. Yeah, I’m disappointed at how my life turned out, kinda. I suppose considering I wasn’t meant to see the year 1984--let alone the twenty-first century--things aren’t that bad. It’d have been disheartening and cruel for an angel to pop up in 1983 and say unto me, “You’ve made it two minutes. Eh, you’ve had a good run.” My twenty-ninth birthday will be here soon. It is simply “just another number” to most; it’s kind of a privilege to me. Everyone has a one-hundredth birthday, after all; most of us never live long enough to celebrate it. It’s best to cherish what you have, when you have it.

Recently, I’ve been considering what’s known as an auditory brainstem implant, ABI for short. It’s a lovely procedure for us deaffies, aimed at restoring partial hearing. There is a lotta technical stuff involved with it, things outside of the scope of this story. If you’re deaf from complications of NF2, you might want to look into it, too. It requires surgical work, an idea that I’m not too keen on. If it works, I won’t complain. I want some hearing restored, yes, but I don’t want to have to undergo surgery. This statement can easily stretch back further. After all, I didn’t 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, well... use your imagination. The idea of more surgery is unsettling. This time, though, it wouldn’t be a requirement for sustaining life. If I have this done, it’ll be--just like with my finger--on my own terms. The fact, however, remains that it’d be done solely to give me back a little normalcy. It’d simply be another price I’ll have to pay.

Dice-rolling is one of the quirky things we all have to do at some point or another. Sometimes you’ll reap rewards; others, you’ll be stuck on another person’s Boardwalk, giving away possessions merely to keep ya afloat. As the French would say, c’est la vie or otherwise, that’s life. No one ever said that life is fair. It knows no mercy or compassion. It doesn’t play favorites, either. There is no discrimination with it. Unlike us homo sapiens, life cares none for your wealth, sexuality, gender, or nationality. It hasn’t a care if you’re 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. C’est la vie. What can ya do about it?

Answer: Live it. Sure, with NF2, you’ll have hardships and obstacles to overcome. But don’t we all? Worrying about fate only makes us stop living our life. It takes focus off the here-and-now. With a disease, 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 anyone’s guess. Yeah, I’ve had it bad and it’ll likely get worse down the road. I assure you, thought, that your life won’t become a replication of mine. I lost a finger. That doesn’t mean every NF2 patient will. Letting the uncertainties of the future consume you will serve no purpose and only distracts you from what’s important. Don’t think of what the future holds. If you’re reading this, then that means you’re still here, on this little thing called earth. You have life. Simply put, just live it and move on.

Disability is never fun. It’s taken away many of my dreams. Fortunately, I still have others and I’m not letting things get to me. Okay, so I’m not gonna be that Ozzy singing and making albums. I can live with that. In fact, I am. 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 don’t dwell on having this disease. It’s not the focus of my world. I’m getting places in the world, slowly yet surely. Plus I have a beautiful niece. Yeah, I’m 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 disease doesn’t define me. NF2 shouldn’t to anyone.

The world can be a scary place. It’s scarier when things come about that ya don’t 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 life--and life, in general--is. I’m 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 I’m 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. I’m a coarse, vulgar guy but I am who I am. I’ll try my hand at things. Yes, I’ll succeed at certain endeavors and the same, I know that I’ll fail at some. The mind of the now-christened Randy Pendleton is focused on living, not dying. What shall become of me, I can’t speculate. But I still have my dreams and believe me, I’m gonna keep those dreams alive.

My recent surgery...

The day before surgery - 30 seconds
short of new PR - 1:58:08
Atlanta Half Marathon (7th time)

Hey! Okay, so I thought I'd write a little post on here about my recent surgery... I am back at school and doing well, but still recovering - hence the fact that I am not allowed to run yet.  Anyway, back in 2009, we found out that I had a "lesion" (nice word for "STINKIN' NF TUMOR!!!") along my femoral nerve, in my upper right thigh.

I had been told by coaches that I "favored" one leg over the other, which is common enough to not create any concern- it just means that you strike and push off a tad stronger with one leg.  Other than that, the first symptom in Spring of 2009 when I told the sports trainer that I couldn't feel my kneecap, which created concern- knowing I have NF2, and so I was told to get an x-ray of my knee.  They sent me home and told me that I was fine, but I knew there was a problem.  As the months went by, that area of numbness continued to spread to much larger areas of my leg- up my thigh and down my shin.  I was scheduled to have surgery to remove the now "enhancing lesion" as they called it after my 2nd MRI of the thigh.  About a month before that operation that was scheduled for September 2010, but then after I had done the pre-op testing, it was CANCELED, because they wanted me to get more tests done!  I had to get an EMG to measure the electrical activity of various muscles in my leg, by sticking little needles into the leg muscles. If you are wondering, I think the pin they stuck in my shin muscle was the most painful of them all!

My entire right leg seemed to be getting weaker, particularilly the quad!  When I tried to do the leg extension machine the gym, I could struggle to do 10 pounds or 15 pounds at best, on my right leg, but it felt like about the same effort level to do the same thing with 50 or 60 pounds on my left leg.  I could even see the difference the the size of the leg muscles- IRON on left and JELLO on right! Despite all of that, I continued running, although my stride altered but my body learned to compensate for the uneven strength... my right glutious-maximus (rear) became stronger than my left side glute.

I'd run my first half-marathon (13.1 miles) back in 2003, and had run a best time of 2:01, but usually ran times in the 2:03 - 2:10 range for a half-marathon run on roads, and all of this time just dying to break that 2-hour mark.  A few months after getting diagoses of having this tumor in my leg, I ran the Atlanta Half-Marathon 2009, for the 5th time, plus i've run other halfs as well, and I FINALLY did it... 4 minutes off... I ran 1:57:38 and you know what? I felt like I was on top of the world!  took off those shoes and had terrible blisters but PAIN IS TEMPORARY! (I've also done five full marathons.)

As of June 2010 MRI, the "enhancing lesion" measured approxtimately 5.3 x 3.6 x 1.9 cm.

And after that, I just kept on running... sometimes I told people that I had a tumor in my leg, but usually they didn't believe me, since I'm always running and biking all over the place.  My boyfriend and I did some winter road races, in sub-zero temperatures, and then an open snowshoe championships race.  He decided to do a triathlon when I had gone home for a week, and the next year we both did it, and he preposed to me at the finish line!!!! <3  ...then we both did Syracuse 70.3 IRONMAN!  (and I'm not supposed to be able to swim in open waters or to ride a bike due to lack of balance nerves... and I still had the leg weakness caused by that darn NF tumor!)

Steve kept telling me over and over that pretty soon I won't be able to use the tumor as an excuse for going slow, because when I recover  and the nerve heals, if will get stronger! ... I LOVE HIM!!!

In October, I went to Boston for doctor's appointments, pre-op, met ups with a girl with NF1, Jen, and also participated in many hours of a medical research study about vestibular balance. A week after that, I ran my first ever 50k... yes, that is 31 miles! 

So, the surgery? It FINALLY happened! November 25, 2011, 9 days ago... and yes, the day after running my 7th Atlanta 1/2 Marathon, and barely missed a P.R. time by only 30 seconds, and finished in 1:58:08... I've only made sub-2-hours twice ever, this one and the other I mentioned above.  After the race i cleaned up, and packed up the car, and my parents and I flew off to Boston, where I would have surgery the next day!  We had celebrated our big Thanksgiving family dinner, the prior Sunday, with my grandmother, but we still had Thanksgiving dinner left-overs for the actual day. 

My surgery was at 8am and I woke around 11:15am, I think- well that is first time I noticed the clock. The surgery went very well and my doctor said that the tumor came out relatively easily with nothing apparent left behind.  I was originally told no running for 1 month, but later was told "2 weeks, if its not painful"!

I got discharged the following day and then on Sunday, at 7am, my Mr. Prince Charming came and picked me up and whisped me away, and drove me all the way back to Rochester.... Did I already say how wonderful he is or what?! NO, YOU CAN'T HAVE HIM!

I returned for my follow-up appointment 3 days ago, and he said that it looks like it is healing very well.  When I casually mentioned to the doctor that I had gone to pilates class 3 days post-op he just said "hah, I knew you would!" My mom was there for my follow-up and we met up with Jen also and got lunch. I started Physical Therapy on Friday, one week after surgery.

I will be up and running, very soon! 
I should get back to studying now!

The class is over (and I got an A!!!) ...BUT, this project continues!

This is a post that I wrote a few years ago, about this blog project. It began to die off but I think it has a lot of potential to keep it going. Please read on and consider contributing your story, artwork, poems, or other works...
____________________________________________

Hey, I just wanted to let everybody know that the class for which I began this project has ended, and I really appreciate all of the wonderful contributions that people have submitted, BUT... I am continuing this project and hope to continue getting some contributions of more people's stories... stories of overcoming adversity, ups and downs, surgeries, medical trials, running for research to cure NF, and more!  

Tell your story here, please! To get access to post here, please message me or send me an e-mail at anne.s.noble@gmail.com to tell me your name and your e-mail address, and I will send you an invite to gain permission to post in this blog.  The reason that I am continuing this project is because I really like what I have so far, and my professor even said that he thinks it could have potential to become a book. (If you would NOT want to be included in this future book idea, that I hope to become a reality, you MUST let me know.  I will respect all privacy rights but for publishing purposes, I think that the screen names MIGHT need to be switched to real names, but I am not sure, yet.) 

2011... __________________________________________________________________________

ALSO, I recently switch the automatic view on the blog to be "Dynamic Views" - Please let me know if this setting is causing you trouble or technical difficulties.  I'm just getting used to it myself, and kind of considering switching back to one of the older views.  If you prefer this, please let me know!

I am home for the week, and really missing my fiance, Steve!!! <3

I am having surgery in a few days for the NF2 tumor that is on my right femoral nerve in my upper thigh, so I would appreciate if you pray for me, if you do that sort of thing. The hopes of myself and my doctors is that the muscle in that area will be able to regain some strength after surgery. Thank you! God Bless!  My surgery will be at 8am in Boston, on Nov. 25th. (of course the day after running a half marathon!)

My first 50k = 31 Miles ... Mendon Ponds Park on Nov. 5, 2011

‎"I never feel more alive than when I'm in great pain, struggling against insurmountable odds and untold adversity. Hardship? Suffering? Bring it! I've said it before and I've come to believe it: There's magic in misery." - Dean Karnazes 
(I liked this quote, but honestly he is just talking, since Dean can't feel any pain!)
 Mendon Ponds Park, Rochester, NY
November 5, 2011

The Mendon Ponds 50k race...
50k runners had to do the 10k loop- 5 times!  There was also races here the same day that began at 9:30 for a 5k, 10k, and 20k. 50k race began at 8:00am.


(A photo essay... There were a lot more pictures but I only selected a few of them.)


I did the 20k at this race in 2009 and figured I'll do it again (last year, I was at NYC Marathon, the same weekend.) I was filling out the registration and saw there is ALSO a 50k race! I thought to myself "I can do that... hmm, what if it snows? ...I don't want to run THAT far in bad weather! ... What if I'd rather sleep in that morning?  What if..."  RIT Running Club informed me that I needed to sign up a couple of weeks in advance, to credit it towards club donations, so I agreed and signed up. I paid the $20 entry fee, still thinking if it snows or cold rain, I can switch to the 20k and just lose $5.... The weather was basically perfect, although I can admit the longest training run I'd done in the month prior to it was 18 miles...

This was the START line for the race... amusing because start line signs for races are generally a good bit larger. Western NY Ultras wanted to do it differently! 

A view of a couple of people on top of the hill, from the starting line...

55 people came out for the start of this race... 49  people finished this race...

Near the end of first loop, sporting my awesome sweatshirt from Sehgahunda Trail Marathon, from May 2011. It was 26 degrees at 8:00am but warmed to about 48 by the time I finished, and the sun was out through the day. 

...This was when I started telling the photographer that there was a golden back that a way. (turns out it was his dog.) ...I'm used to seeing deer along a trail, but I had just been getting into my runner high, when a gold retriever with came dashing through the woods and across the trail!

 Blazing a hill on the course during my 2nd or 3rd loop... that hill is a LOT tougher than it appears to be, due to being loose small rocks and dried dirt.

  

Thank goodness... my ankles are still attached...

A pretty photo of some of the race trail. It was some wide carriage like trails and some very narrow single-track trails. 

This is me finishing my 3rd loop, when I decided  I had warmed up enough to ditch the wind-breaker.

This is me finishing my 4th loop...

This man is asking if I am done and I said I still have ONE more loop!

Beginning my 5th loop... ouch :o)

Wow, there's so few people there that 

the birds became the main attraction.

More birds...

There were benches sort of like these scattered in random places, along the trails of the race course (as well as equestrian horses and couples young and old- enjoying walks) ... When you are running ALONE for 98% of that 31.5 miles, these benches can play mind games... wanna rest or will you keep running? (I never touched any of them, but I'm just saying it was tempting, on 4th and 5th loop.)

Striking a "Prefontaine pose" as my friend referred to it as, while I finish for last place, which is the hardest place. (I did however win my age group though and I was the youngest female finisher, only female finisher under 30!)

I finished in 8 hours, 24 minutes, and 9 seconds.  My legs were just totally killing me, especially the way that my left leg was getting mad at me, for my mind making it do double the work, after my right leg decided to basically go into fail-mode, by the 2nd loop.  (I'm having surgery in 3 weeks for a tumor on my right femoral nerve, and it has been causing great deal of weakness to that leg.  It is the hope of me and my doctor that the muscle there will be able to regain some strength, with work of course, after the tumor is removed.) 

Time for a 6th loop, eh?

Getting my finisher's medal

<-- Food that way (the little sign says "soup & bagels"!)

Daddy said it was a space shuttle...

Been there done that

at least once per year

since I was seven

Dad first told me

it was a space shuttle

I got excited-

A ride to the moon

Mommy drove me 

to visit the shuttle

clouds and animals-

tucans, tigers, monkeys-

covered walls and ceilings.

There it was in a room,

the big space shuttle.

I kept coming back

every single year-

used to put me to sleep

They pricked my hand

I used to cry, cry, cry

It used to have stickers

Lion King stickers, inside

It is just plain white, now.

I am older and I know

it is not a space shuttle

They still prick my hand

I learned to lay still

It's really hard to not-

wiggle, wiggle, wiggle

I still come back

every single year

It used to be very loud

but now the tube is silent.

I used to get a toy-

Now I just get a CD,

and schedule another.

Vestibular Research as a "lab-rat" for NF2

Total darkness

Chair moves left

Was that right or left

I think that went right

oh, definitely left

Lights come on-

then off, again.

Chair moved down

and down, again.

I know I can't say down-

too many times-

I'd go through the floor.

I think that was up.

Was that up or down

It is confusing

hard with no balance

Tilt to the right

Right, I think

Feeling weary now

Chair tilts to the left

Lights come back on.

I hear “start” and beep

I hear “respond” and beep

I have to decide

which button to press

I press the right

then press the left

Repeat hundreds of times

It was mentally exhausting... when I got back, I think I slept for 9 or 10 hours!

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 explanation...

I had an interesting experience on Thursday, I had two appointments and pre-op in Boston for my NF2 , but during the short time breaks before, after, and between each of those appointments and then some more on Friday, I participated in about eight hours of a vestibular research project at Massachusetts Eye and Ear Institute, that I had been asked to take part in. (They paid be a little compensation to do it, which was a nice bonus.) It was especially interesting because they had never done the test with a person with bilateral loss of balance nerves, nor a deaf person, for that matter. I had to sit in a strange looking big robot chair that moves on some tracks, in complete darkness, and then press either of two buttons to indicate which direction I perceived the chair motion having had made. My feet were on a platform below and moved in the same motion as the chair. It could move side to side, or up and down, or tilt right or left. Sometimes I could tell my feeling the direction my body moved, but other times I just had to press a button and guess! This task would be difficult for any person, but I think they were particularlly interested in working with me because they know I have no intact balance nerves, however do these things that I'm “not supposed to be able to do,” such as marathons, triathlons, etc.