Saturday, September 14, 2013

Ewing Sarcoma and a Purpose Driven Life: Part II

This is the final installment of a three-part short story which spans my 11th and 12th anniversaries of surviving bone cancer. You can read the first two parts here (in order):
The Journey of Ewing Sarcoma
Ewing Sarcoma and a Purpose Driven Life: Part I


Ewing would need an assistant to help him fulfill his purpose. He considered contacting local high schools for cheap labor, but who was he kidding—nobody was as brilliant or fun as Pong. Some of their oxy and sewage-charged evenings were epic. If he returned his brain to that precise chemical imbalance then maybe he would remember the forest trails that led back to Pong.

Ewing had a foreboding feeling about Pong. He couldn’t build the proper bartering wealth to attain his drug concoction soon enough. Full of shame and conviction, he engaged in one more sexual act with a forest creature in exchange for drugs.

Ewing recalled the formula Pong had developed for the perfect high, and re-calculated based on his increased weight (hey, it’s hard to keep the fat off). He mixed his two drugs and waited, though not for long. He saw the path so vividly in his mind, as if it were implanted! Ewing jumped up and hopped through the forest toward Pong faster than he ever had before.

When his vision ended he stopped hopping and was certain the longitude and latitude were precise. He called to his friend, “Pooooooong!” until he couldn’t breathe, and then yelled again, over and over. No response. Ewing feared the worst as his heart ached with regret. He should have taken his small friend with him when he stupidly thought he was dying. Ewing sobbed himself to sleep.

***

Sometimes Ben lost his way. He ate unclean food and allowed unclean thoughts to penetrate his mind. Worst, he sometimes lost sight of where he came from.

On his 11th cancer-free anniversary Ben had recalled the perception of his tumor that he drew before beginning cancer treatment, when he was 16. He had used that picture to motivate him to anger. Ben must have gotten soft in his late twenties because he grew to see that picture as a symbol, a reminder of where he came from. So that he would never again lose his way, Ben got a permanent tattoo of Ewing. I’ll bring Ewing back to life, Ben said jokingly.

Ben laughed out loud at his next thought—tattoos are addictive and it is time for a new one. He couldn’t wait to tell his mom about his new tattoo idea. Maybe he would tell her on his 12th anniversary of surviving Ewing’s sarcoma, on September 14, 2013, at 3:40 p.m. Ben looked at the timestamp of this blog story…er, I mean his watch. Damn time flies!

He picked up the phone. “Hey mom…”

***

Once again, a crying mouse awakened Ewing. He rubbed his big eyes and then had to blink hard. He was staring at Pong! But Pong was sort of grayish, and also wearing a red ninjutsu robe.

Ewing rifled off sentences without breaks. “Pong I looked for you I’m so sorry I left you I shouldn’t have left you I’m sorry my friend Pong oh dear Pong I’m so glad I found you please forgive me!”

Pong spoke softly. “Dear Ewing Sarcoma, I forgive you, though you need not even apologize. You were wonderful to me and I felt you needed space to find you own path.

“I was able to survive for a long time. I outsmarted my predators and talked my way out of being eaten. Sometimes I had to negotiate my survival by committing sexual acts. Oh, that horror and shame, but I longed to live. What can I say—I’m a hopeful motherfu…”

“What do you mean ‘able to survive for a long time,’” Ewing interrupted.

“Ewing: I am deceased, consumed by a rat snake. Of everything I survived and all the potential ways to go, can you believe it was a rat snake? That still pisses me off. But Ewing, my best friend forever, I met my father in limbo. As I suspected, my father is Master Splinter. I do not hate him any longer. With my superior intellectual capacities and his 749 years of crystallized, albeit diminishing, knowledge, we concocted a new drug that lets me straddle life and death.”

“I don’t understand,” Ewing said with tears streaming down his face.

“Ewing, I will always be with you, but only you can see me.”

Ewing’s simple mind still couldn’t understand, but AlternatePong was here, talking with him, and nothing else mattered! Ewing told AlternatePong about his new purpose in life and how he needed help. AlternatePong was thrilled to assist.

Ewing and AlternatePong worked on their mutual life purpose—helping sick children feel comfort, empowerment and joy. They worked on a precise schedule because AlternatePong had to take his quasi life-sustaining drug every six hours, with just a four-minute window before and after. “That’s more intense than the pill schedule for someone with HIV,” Ewing said.

For four hours three times a day, they worked together under their favorite oak tree. They brainstormed, contacted stakeholders, and drafted communications and marketing plans. Ewing and AlternatePong loved children and how they saw the world. Ewing’s journey to find his life’s purpose was long and hard, but every second of their work was rewarding.

***

Ben finished talking to his mom, who congratulated him on 12 years of freedom from cancer. “If you get another tattoo then I’ll be forced to get one, too,” she also said.

“I’ll help you choose your design.” He could always call her bluff.

Ben poured a glass of wine and walked to his community pool. It was 75 degrees and beautiful. A little boy was playing in the pool, splashing and laughing wildly. He swam to Ben and introduced himself as Timmy. Ben’s eyes drifted to the bump on Timmy’s chest, under his skin. Ben would recognize that port, which delivers chemotherapy, any day. “What is that picture on you?” Timmy asked.

Ben thought hard about how to answer. He looked toward his ribcage at Ewing. “This guy? This is Ewing. Do you want to hear more about Ewing?”

“Um, yes.”

“Wait here.”

Ben rushed into his home and printed the design of Ewing that his tattoo artist had used, placed tape on the back of the paper, and then brought it to Timmy. “Timmy, meet your new friend, Ewing. Though he doesn’t have super powers like you do, he can be your sidekick if you let him.”

Ben pressed Ewing onto the front of Timmy’s little bookbag. “Ewing will listen to you when you’re sad, motivate you to be strong, and fight illness with you. Ewing can be your secret protector!”

Timmy loved Ewing. “Can just anyone have Ewing?”

“No, Timmy. Only kids who have to deal with illness can get a Ewing. He knows what you’re going through and how isolating cancer can be. But he also knows that you have a special perspective and a unique story to tell, someday, when you’re ready. You already have a ‘cool’ factor, and now you have a Ewing!”

The next day Ben printed dozens of stickers of Ewing and gave them to Timmy. “Now you can take him everywhere.”

Ben returned to his home and poured another glass of wine, thinking back on his 13 years with Ewing, 12 as a survivor. You gave me motivation, hope and perspective. Now you helped Timmy. So I guess you gave me purpose, too. On this Day of Atonement I am sorry I ever threw you in the garbage can. It turns out I always needed you, Ewing.

***

Ewing woke up hearing Ben’s thoughts. He was so overcome with joy that he hadn’t noticed AlternatePong and Master Splinter next to him, or that his blue spots looked somewhat transparent. “Where are we?”

AlternatePong answered. “Were you able to comprehend that crazy ass Freud when you read his work?”

“Of course not. He was crazy.”

“Well, he was one crazy ass but…”

“Just tell him,” Master Splinter interrupted.

AlternatePong complied. “Ewing: we are all different layers of Ben’s preconscious and unconscious mind. That includes you.”

Ewing began sobbing violently. “What does that mean? Tell me, please!!”

“Ewing, we aren’t real. We are a part of Ben, sometimes guiding him towards right and sometimes just observing.”

Ewing wiped his eyes for the final time. He understood. The purpose he sought had always been correlated with Ben’s desires, morals and purpose. He, both Pongs and even Master Splinter were a part of Ben. And then just like that, Ewing knowingly closed his eyes for the final time, never feeling more at peace.

***

Ben sat down next to Ethan, a quiet 16-year-old boy who he volunteered to spend time with, in Ethan’s transplant room, offering a box of pizza.

“Is it pepperoni?” Ethan asked.

“It wouldn’t be pizza if it were anything else,” Ben said. “Oh wait, are you allowed to have this?”

“Ha-ha, so funny. You better have gotten me more than one slice for that comment.”

Ben arrived at the hospital just in time to watch the analysts’ predictions before the Redskins game. “Well, who ya got?”

“Never bet against RG3,” Ethan said.

“That’s my man,” Ben said to his young friend.

Next to Ethan stood his IV pole which held bags of liquid that dripped, dripped, dripped into him. And on each of those bags was a sticker of Ewing that some little kid was handing out a while back. Ethan used the stickers to cover the IV bags’ biohazard symbols. Oh, Timmy! Ben thought.

Before kickoff Ben looked at Ethan and smiled, and then looked up at Ewing. Ben chuckled. He could have sworn Ewing smiled back.

***

Postscript: If you wish to share then I would be more than grateful to hear your feedback on this three-part short story. After years of blogging I am still honored to have interested readers. Thank you.

Disclaimer: The character Ewing Sarcoma and its likeness are the property of Benjamin Rubenstein. All rights reserved.

Leia Mais…

Friday, September 13, 2013

Ewing Sarcoma and a Purpose Driven Life: Part I

This is the second of three installments of this short story which spans my 11th and 12th anniversaries of surviving bone cancer. You can read the first part, which I wrote last year, here: The Journey of Ewing Sarcoma

Ewing Sarcoma Tumor PerceptionEwing Sarcoma hopped much of the day and slept all night. He paid no attention to the date, time, angle of the sun, or anything else that keeps creatures grounded in reality. He ate when he felt hungry and found shelter when his bum got cold. He lived a clean life, breathing fresh, forest air and consuming only organic plant products. And he said the Shema for Ben, his creator, every night.

Wow, had time passed since Ben drew Ewing Sarcoma on Microsoft Paint before beginning cancer treatment when he was just a teenage boy! Ewing was Ben’s perception of his tumor, a symbol of how to destroy cancer. Ewing completed his task.

Though Ben didn’t know it, Ewing was alive and when Ben no longer needed Ewing, the little guy left. Ewing returned to look in on Ben many years later, when Ben had become a young man. But Ewing left again to let Ben find his own way. Ben was trying his best to live a complete life thanks to cancer, but what about Ewing’s purpose?

Ewing was a loner, the only breathing tumor perception in the world, maybe the universe! If he could convince other people diagnosed with cancer to draw their tumor perceptions like Ben had, then they would be motivated to survive and live a complete life.

But how did he come to life in the first place? How could he replicate that magic, and who would talk to a blue-spotted blob, let alone be convinced to draw a picture of a tumor? Ah, it was futile. Despite his overwhelming sense of hope, Ewing had some logic below those spikey hairs.

Ewing could only hop so long without his butt callouses erupting into a blue-blooded mess. He spent many of his remaining waking hours reading Friedrich Nietzsche, that crazy ass Sigmund Freud, and of course James Patterson. He also considered a new purpose. Brief epiphanies came to him in dreams or when he hallucinated on psilocybin mushrooms (don’t get Ewing started on their natural health benefits or drug policy). He was just always too high to write his epiphanies, and would forget the next morning.

One morning Ewing was awakened by a crying baby mouse. Memories of his old pal, a small mouse named Pong, pulsed through his mind. Snippets of the previous night’s epiphany also crashed through his interrupted REM sleep and into semi-consciousness. Ewing rubbed his eyes, hair, blue spots; anything to stimulate his senses. Hold on, it was coming to him! Yes, wait...he got it! Ewing found his new purpose in life.

Ewing Sarcoma would help children cope with disease. It’s no fun when kids can’t play with their friends because their illness makes them feel badly. Their friends may not understand why, but I know what’s up. I will watch over them. Kids, get ready to meet your new sidekick, Ewing!

***

I’m a chameleon. I change for self-improvement, and I do this better than anyone in the universe, Ben thought. Change would lead to perfection, which would stymie fears of cancer recurrence or rejection, which would lead to an uncrackable superesteem. Ben chuckled. He chuckles too often, and one has to wonder if he’s becoming as crazy as that crazy ass Sigmund Freud.

Ben shared this theory with a new friend, McNasty, who is a decade older than Ben. Ben even prefaced his “wisdom” by saying, “I know this is weird coming from someone who is younger…”

McNasty called Ben on his bullshit. “You seek perfection to camouflage your true fears. I do the same thing.” McNasty was the wise one.

It had only been a couple years since Ben felt…normal, mature, like a real adult? He couldn’t explain it, whatever it was. He hadn’t forgotten his past, but also needed to move forward. Ben was destined for a tug-of-war between the two.

Ben sighed. When his mind cluttered he turned to cleanliness. His food, attire, appearance, residence: all clean and neat. Even his cancer brought a sense of cleanliness: he discovered his tumor and then became cancer-free a year apart, nearly to the minute on September 14, always around the Jewish High Holy Days. The New Year always brings a clean, new beginning.

It’s as if Ben and Ewing were born of the same genes.

***

Pong was no longer a baby like when he first met Ewing, but he was still small, even for a mouse. He was orphaned at such a young age after an incident involving his bastard dad that is too horrid to write. And while frolicking with Ewing, Pong got into narcotics and sewage alcohol, and there was some sexual abuse that I also cannot mention…no, he was not abused by Ewing! Get your mind out of the gutter.

Pong’s intelligence was an outlier, even on a human scale. I guess since my dad bestowed me with such wits, I can’t despise the old bastard with all my being, Pong thought. After intense research on ancestry.com and genetic blood testing, with a 95% confidence interval Pong’s father was Master Splinter.

Pong missed Ewing, his only real friend and guardian. He remembered playing with Ewing’s hair and poking his blue dots. Pong had never seen anything so gorgeous and blue! And then Ewing left abruptly because he thought he was dying, and wanted to pass away alone. Pong knew Ewing wasn’t actually dying and considered him kind of an idiot for thinking that, but let him go anyway. Pong understood Ewing needed to find his purpose. Except for IQ, they were so similar.

Pong lived in terror of being eaten, barely sleeping at night and avoiding predators during the day. Although he thought crazy ass Freud was a complete sicko, Pong would kill just for the opportunity to read his or anyone’s work. All the forest’s simple-minded creatures who wanted to eat him were stuck in the Stone Age, and were ruining his chance to fulfill any kind of purpose! Such wasted brilliance.

Pong always got the short end of the stick, but he remained hopeful. Maybe one day he and Ewing could be together again.

Keep reading to discover how Ewing's journey ends: Ewing Sarcoma and a Purpose Driven Life: Part II

Disclaimer: The character Ewing Sarcoma and its likeness are the property of Benjamin Rubenstein. All rights reserved.

Leia Mais…

Wednesday, September 11, 2013

Love and Rock Climbing

As published on The Huffington Post

Benjamin Rubenstein about to climb Bailey's Overhang at Boulder Canyon, ColoradoMy heart is racing. "How excited and scared are you?" I say.

"On a 10-point scale... 7 and 3. I'm more scared of boredom for when I'm down here all alone. How about you?" Pumba says.

"100 and 100."

Our lead-climbing instructor set the first pitch: "Bailey's Overhang" on Castle Rock in Boulder Canyon. Pumba and I are waiting to climb while the second of our four-person team ascends. Pumba will climb last and clean the cams from the route.

Pumba is named after the sweet warthog who is Simba's guardian in The Lion King. I don't know her given name because we only use nicknames in rock-climbing. My nickname is Hippy because my left hip bone was surgically removed when I was a teenager. This is the last of our five-day rock-climbing trip composed of about 15 strangers.

Benjamin Rubenstein climbing Bailey's Overhang at Boulder Canyon in ColoradoIn between shouts of encouragement to S'mores working her way up, Pumba shares how rock-climbing gave her peace when nothing else worked. I share how it's now the only sport I can succeed at after a childhood saturated with athletics, then a bone saturated with bad cells. Our necks are tiring from staring up at the rock, so we move further from the wall and into the warmth of the early sun. We've completed the most challenging routes in this order, Pumba after me, and the climbing instructors teamed us together on this "graduation day" because of that.

We see a different team from our trip on an adjacent climbing route, and wave up to them. "I hope everyone else takes pictures so we can see their routes," I say.
View from ledge, Bailey's Overhang at Boulder Canyon in Colorado
Pumba's face brightens as she reaches into her bag for her camera. "I totally forgot I'm the photog!" she says.

I love teasing her for forgetting her designated duty, though she has taken plenty of pictures of me climbing towards the sky. Pumba told me that she smiled up to the sky through the window the time she fell ill, her body nonresponsive and her mind stuck in time. "I could have kept that image forever," Pumba said.

S'mores reaches the top so I switch my left sneaker, which has a 2.25-inch lift because my femur migrated up without a bone to stop it, with my much leaner climbing shoe. I shout the proper "belay" and "climbing" commands, then look back towards Pumba and the gigantic Rocky Mountains behind her that make me both so small and grand. Keep reading, here

Leia Mais…

Monday, September 2, 2013

The Time I Went on a Rock-Climbing Date with a Heavier Girl

I’ll add an extra foot of height and she won’t care after I charm her, never crossed my mind, but other online daters are liars. The most frequent deception is using outdated profile photos.

I met Rocha for a date at Sportrock climbing gym without even having to beg her to participate in my favorite activity. She may be the one. Thankfully Rocha approached me because I may not have recognized her from her profile otherwise. While putting on our gear, I proactively prepared her to see me climb in a funny way and she retroactively prepared me to see a 30-pound-heavier version of Rocha.

I climbed first to prolong dealing with gravity. In rock-climbing, the belayer (the person on the ground holding the rope) should be within a certain weight range of the climber. Beyond that range it is possible for the climber to elevate the belayer, potentially until they meet in the air halfway. To prevent that, the belayer anchors to the ground.

I should have pretended to break a limb during my climb, or actually broken one, to avoid belaying Rocha, but I love climbing too much. I reached the ground and we reversed positions. “You’re really good, especially with one hip! I’m going to climb an easier route,” she said. An easier route reduced the likelihood of her falling. If she fell then I’d have to support her weight plus acceleration.

I looped the rope through my belay device and locked the carabineer. Then came the moment of truth: to anchor or not to anchor. If I anchored then I was guaranteed to embarrass Rocha significantly. If I didn’t anchor then there was a good chance I would embarrass Rocha irreparably if she pulled me off the ground, but there was also a chance I would stay grounded and she would never have to know.

I didn’t anchor. I checked Rocha’s figure 8 knot and told her, “climb on!” I got into a squat position and kept her rope so tight that she barely had enough slack to move.

Rocha’s foot positions were smart enough to make up for her limited strength, and she completed without slipping or having to “take.” When she was ready to come down, I placed my feet even further in front of me and got my ass down low. “On me!” I yelled up to Rocha.

She released from the wall and my feet slipped forward. Just when I was about to instruct her to reach back for the wall because I wasn’t ready, my feet halted. I sighed and began to lower her, each of my limbs performing a precise function meant to get her on the ground without me leaving it.

Mission accomplished. She touched down; I gave her extra slack, and nearly made her jump with my congratulatory enthusiasm.

Rocha lacked endurance and I mentally depleted mine, so we only climbed a few routes each. As is customary, Rocha gave me her phone number. A few days later I contacted her seeking another date, unfazed by our horizontal differences.

I guess she was fazed by my general nature. Add another strikeout to my tally.

Leia Mais…