Thursday, September 27, 2012

Washington Redskins Honorary Captain

“It’s one of my fears—to be on the big screen and everyone say ‘you suck,’” HollaAtYoBoy said.

I then fantasized being introduced for the coin toss before the Washington Redskins game: “And two-time cancer survivor Ben Rubenstein…” Before the PA announcer can finish, the crowd chants “Booooo!

This discussion didn’t arise out of the blue like HollaAtYoBoy’s drive-off-the-highway gestures had on our way to Beach Week years ago. In February I sent my book to the Redskins’ owner, Daniel Snyder, with an enclosed letter illustrating what his team meant to me throughout my cancer treatment. His assistant called me a month later saying that Mr. Snyder wanted me to be the honorary captain and official observer for the 2012 home opener. I followed up in July to ensure I hadn’t dreamed it. She confirmed the opportunity and said she’d call back in August with details. I didn’t hear from her, so in September I called the Redskins. His assistant left the organization, and after looking into it, the Redskins Charitable Foundation inked me in for the September 23 game against the Cincinnati Bengals. Days later, Sarah Kogod of The Washington Post contacted me. The Redskins had sent her a copy of the letter I wrote to Mr. Snyder and she wanted to write a piece on me and my upcoming team captainship. Two days later we spoke, and one day later—50.5 hours before the game—Sarah’s story published. The story spread rapidly and the response I received was congratulatory and full of enthusiasm (and jealousy).

SlimZ shook my hand before JD and I left his tailgate at 11:10 a.m. on Sunday. “He just wanted to shake London Fletcher’s hand through you,” JD later told me.

We arrived on the field at 11:30 and walked around. When considering my Make-A-Wish Foundation gift in 2000 I had nearly requested for me, JD and friends to play flag football with Redskins players at FedEx Field. Only that would have been cooler than this.

JD had taken less than 100 total photos with his nine-month-old iPhone. That more than doubled Sunday as he was on photography duty.

Ryan Kerrigan stretching during pre-game warmups
Ryan Kerrigan's calves are the size of my thigh
On the field before a Washington Redskins game
It took willpower for me not to eat the field to attain some form of permanence, even if it meant undigested grass lodged in my intestines
Media covers the Washington Redskins from FedEx Field
Too bad JD didn't have that camera to work with
Cincinnati Bengals warming up before Redskins game at FedEx Field
Humans weren't meant to get this big…
Fred Davis warming up before Washington Redskins game at FedEx
…Fred Davis included
Washington Redskins Honorary Captain before coin toss at FedEx Field
Now we're getting closer to normal human size. I'll ask Daniel Snyder if he can field a team of Rubensteins…
Meeting Daniel Snyder on FedEx Field before kickoff
Mr. Snyder (black suit) wasn't fond of the idea, though he was very chill and wearing sunglasses with slick-backed hair. I also asked rapper Wale (front right) if he was performing, though I should have recruited him to the Rubenstein team.
Meeting GM Bruce Allen on FedEx Field before kickoff
When GM Bruce Allen (black suit) shot down my idea, I was too depressed to ask offensive coordinator Kyle Shanahan (shaking my hand). He knew better than to tell me I had "no f***ing balls."
DeAngelo Hall warming up on FedEx Field before kickoff
DeAngelo Hall is too cool for socks. Despite his performance Sunday I still believe he's cool, and has balls.
Washington Redskins Honorary Captain for coin toss
The coin toss is approaching. My balls are intact, though my poo may not be.
Washington Redskins run onto field during introductions
The Redskins are coming!
Washington Redskins cheerleaders before gametime
JD got distracted. Trust me, they're coming.
Nearing kickoff at FedEx Field
Game time!
Robert Griffin III runs onto FedEx Field during Washington Redskins player introductions
The ovation for Robert Griffin III (middle of picture) was deafening. Skins fans haven't felt this kind of excitement in years.
Honorary Captain enters FedEx Field for Washington Redskins coin toss
My favorite picture: me smirking as I contemplate photographing RG3 mere seconds before I walk out for the coin toss…
Robert Griffin III warming up on FedEx Field before kickoff
…Of course I will photograph him from ten yards away

I was not provided much instruction prior to the coin toss. Let's watch the series of events:

Entering midfield with the players was an amazing rush. I doubt I received boos, though I can't even recall how the PA announcer introduced me, so I later asked Matte Ice. "Best selling author/baller," he joked.

After kickoff, JD and I were escorted to Mr. Snyder's suite. We passed the double wooden doors into a huge burgundy room with couches to the right and a bar to the left. A gourmet food buffet spread in front of us, which included Georgetown Cupcakes. We walked past our lunch and photos of Daniel Snyder arm wrestling Darrell Green, toward our seats. Three long rows of soft bucket chairs filled the length of the suite in front of the open view of the field. Each seat came with headphones to listen to the game on various stations, a game program, artesian water, and a name tag. JD and my seats were on the end in the first row. I sat next to Sandy Montag (a top sports agent), five chairs from Alan Greenspan, and on the opposite end as Daniel and Tanya Snyder. We met Clinton Portis who spent much time at the bar. Sandy introduced me to Joe Theismann, one of his clients, whose handshake strength I was unable to mimic.

Televisions displayed everywhere, including the bathroom.
Daniel Snyder's owner's box men's bathroom urinal

The napkins and most everything displayed the Redskins emblem.
View from Daniel Snyder's owner's box at FedEx Field

Sandy remarked it was the nicest owner's box in the league. There is nowhere I'd rather watch the Washington Redskins play.

At halftime JD and I walked around. We stopped in front of a large picture of the '99 team at the White House, when the woman on the couch asked, "Are you Ben?"

We hadn't even noticed Daniel Snyder's wife and family in front of us. Tanya told us how the owner's box had previously been more secluded, but she worked to create an open and welcoming atmosphere. She said that because of Daniel's passion for the team, there are times he prefers to get away from the cameras. He must have spent the end of that painful first half in his cave, wherever that was (the Redskins were losing 24-10). "After the game we'll all get a picture with your book," she said before informing someone to retrieve her copy of Twice.

I laughed. "Honestly, that's not necessary," I said.

JD and I returned to our seats for the second half, along with my third plate of desserts. I looked over at Mrs. Snyder at times: always attentive, often rooting the Redskins on. Mr. Snyder waffled between his front-row seat and his cave.

The Redskins dominated the third quarter scoring two touchdowns. In the fourth quarter the Bengals tacked on two touchdowns, and RG3 ran for one. Down seven points with 1:47 left in the game, the Redskins had the ball at their own 2 yardline. RG3 had already led the offense to more points in each of his first three games than the Redskins typically scored in the past 12 years. Now, we needed seven more.

Mr. Snyder came out from his cave and approached the front row, next to JD, to watch the rookie. Eleven-yard pass, then a twelve-yard pass. Daniel was screaming, "Let's go Robert! Come on, baby! Let's go Robert!"

JD and I couldn't believe the billionaire owner of our beloved team cared this much. In that moment we realized that if Snyder committed murder then we'd still have a certain respect for him.

Robert Griffin scrambled for 19 yards and was hit way out of bounds to gain another 15 on a Bengals personal foul. Now, Snyder was screaming semi-obscenities at the refs and/or Bengals player. Had JD and I been watching at home we'd have done the same thing, but now Snyder's behavior encouraged us to partake a little. We wondered if Snyder approached us because we were real fans as opposed to some others in the box who attended because they held status.

With 29 seconds left RG3 was sacked for a 15-yard loss, and then Fred Davis was called for a false start with 7 seconds left. The Redskins then were called for a personal foul penalty because, in short, the replacement refs were clueless. Now at their own 41 yardline, RG3 heaved a pass that went incomplete, ending the game. It was furiously exciting, with an unfortunate conclusion.

We sat in disbelief of our surroundings before getting up to leave. I waved goodbye to Mrs. Snyder, but she met us back at the couches. "Mr. Snyder really wanted to talk more with you, but he's with the press now and not in the best mood. He's so disappointed because he wanted the team to win so he could give you the game ball. We'll have to bring you back another time, if you want." I looked at JD speechless, who chuckled and replied, "Of course we'd love to come back. This was amazing."

Tanya said we could wait around in case Mr. Snyder came back, but ten minutes later she insisted we get a picture with Twice since he wasn't likely to get away from the press.
Tanya Snyder and family in Redskins owner's box with Benjamin Rubenstein

Of all the powerful individuals in the box that day, she spoke to JD and me for half an hour. She is kind as can be, a fellow cancer survivor, and hopefully serious about having me back to get that game ball.

Though the coin toss was an adrenaline-filled blur, the whole experience was unforgettable thanks to the owner of the team I so proudly captained that day.

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Friday, September 21, 2012

Redskins and the Washington Post

In the Washington Post's "DC Sports Bog" today I was featured in a story about my relationship with the Washington Redskins, my favorite football team, and how I will be an honorary team captain this Sunday. You can read the story below; stay tuned for my own blog story about what is sure to be an awesome experience.

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Friday, September 14, 2012

The Journey of Ewing Sarcoma

It was warm outside and within his high school’s walls, but Ben shivered. Rosh Hashanah—the new year—is approaching, and I get this? he thought, longing to time warp to the following September to bypass the intense cancer treatment ahead of him.

Ben’s life had become a whirlwind: doctors, so many of them, some called “fellows” which he guessed meant that they were nice; painless tests in cylinders and in rooms where the technician refused to remain; painful tests with needles; vials to collect his blood, pee, and semen.

Now just two days before beginning treatment Ben sat in his school library, void of the jackhammering cylinder, beeping poles and silent screaming of the cancer halls. His assignment was to write a paper for Journalism, but he was going to get an “A” without effort anyway, even if he had never been diagnosed. Ben opened Microsoft Paint instead.

Perspective of a Ewing's sarcoma tumor
Ben knew his tumor was called Ewing’s sarcoma, which was composed of round blue cells. I wonder if the tumor bleeds blue like in the alien video games, he thought, chuckling. He drew his blue-speckled tumor. He gave the tumor spiky hair, big eyes and a wide smile. But why was the tumor happy since he was going to lose? Ben undid the mouth and instead drew an open one filled with terror. Ewing better be afraid of me, coming in over “5 foot nothin', 100 and nothin'”…though not by much. Ben chuckled again.

He printed the drawing of his scared tumor, who he named Ewing Sarcoma, and attached the picture to the refrigerator at home. He normally ignored Ewing Sarcoma. But sometimes, after returning from the hospital for long stretches to receive chemo or in immunodeficient isolation, Ben would stare at Ewing. He tried crafting a clever put down, but failed, blaming “chemo brain,” though insults were never his strong suit. “Fuck you, you spiky fuck.” There, simple enough.


Ewing remained unflinching in his flat environment, despite the cursing, spitting and physical violence. He knew there must be a dent behind him large enough to break the seal. No wonder why his ass was always so cold. He wanted to cry, not for himself but for Ben, his creator and reason for existence. Ewing wanted to consume Ben’s chemo and suffering, but understood his role. Ben needed him for release, and Ewing would sacrifice anything to help.

Ewing’s greatest sacrifice was letting Ben crumple him into a ball after Ben completed treatment, and throw him in the garbage. Ewing found a sliver of light. Is Ben’s dad seriously throwing a banana peel on me? When dirty Windex rags came next, Ewing wished for more fruit. At least now he could cry because Ben no longer needed him; actually, Ben would try to go each day without letting cancer cross through his mind. Ewing had became a reminder.

Ewing wiggled free of his two dimensions and bolted when no one was looking. Once outside he looked at Ben through the window and sniffled. I’ll return when you need me. I promise. Ewing couldn’t bare it any longer, so he said a prayer for Ben and hopped away, without looking back.

Ewing’s new life purpose was out there, somewhere, so he ventured through the forest in search. Wow, the world was huge to him! The colors, creatures and dimensions were overwhelming. Which critters should he fear, how much sun leads to a burn or skin cancer, which plant oil soothes the rash on his head? Ewing would need help to survive.

Ewing found that most insects and animals snarled at him, with two exceptions: earthworms and baby mice. But the earthly-colored and elongated worm reminded him of that banana peel, and he needed to put Ben out of his mind. One day, with some liquid courage thanks to fermented sewage he gulped, Ewing approached a like-sized baby mouse. He offered the rash cream he had developed on his own as a peace offering. The timid baby mouse accepted the cream, and rubbed it under his tail. “Oh, thank you. I’m never eating pepper jack cheese again. My name is Pong, what’s yours?”

“I’m Ewing.”

“Listen, Ewing, I’m an orphan thanks to my bastard dad, but that’s a long story. Let’s stick together.”

Ewing was delighted with his pal and grew to enjoy his freedom, though he suspected there never was another purpose in life: there was only fun. Ewing and Pong bartered their rash cream for narcotics and sewage alcohol. The addiction took hold quickly. They couldn’t make enough rash cream, so Ewing engaged in sexual encounters with any willing participant, despite his lack of reproductive organs. He first cursed Ben for this, and then himself for resenting his creator.

Ewing and Pong were sometimes robbed. And there was that one instance of sexual abuse. But altogether they did pretty well together, traveling the forest and accumulating adventures. I just wish the blackouts weren’t so severe, Ewing thought. And why doesn’t Pong get them, too?

One morning, Ewing woke up blind. He wiped his big, blue eyes clean and realized the blockage had been hardened, sewage-scented vomit. He had many bleeding tumor ulcers. Worse yet, he recalled nothing. “Pong, what happened?”

“Dude, you hooked us up with the best stuff last night! You should be glad you can’t remember in this case!”

Ewing’s entire being was sore, but the sharpest pain was in his heart. He now understood his “fun” was all just camouflage for his life unfulfilled. He loved his friend, but Pong would never understand or relate to his desires. And despite constantly searching for another tumor perception like him, he was the only one; no human had ever drawn a tumor perception besides Ben.

Ewing entered a depressed slumber and woke up days later in a cold sweat. Something pulsed through Ewing. He brushed it off as part of his sadness and withdrawal. But the pain that began in his head expanded, and Ewing could only think one thing: he was dying of cancer.

He wanted to enter death’s gates alone, so he said goodbye to his wonderful companion, Pong, and departed unknowingly in the direction of Ben. Ewing pondered God, the fairness of the world, and his afterlife. He hopped all day and night, and by the next morning his pain dissipated. Does a spreading tumor diminish pain sensations as death approaches? He looked around for a sign. What he found was the same scenery he encountered years earlier, when he left Ben. This pain wasn’t a tumor at all: it was a beacon because Ben needed Ewing again! Just as Ewing couldn’t will others to see the world as Ben had in his own creation years before, Ben couldn’t will himself to forget cancer.

Ewing hopped with great strides, ignoring crickets and earthworms. He picked up speed to a near glide until he reached his home again. Ewing stopped, unable to move. He was peering at Ben through his open bedroom window as his eyes drowned in tears of joy. This moment made all the hangovers and lost years worth the journey. Ewing excelled at telling time via the sun's position, and noted it was September 14, 2012, at 3:40 p.m., give or take. That meant that Ben was precisely eleven years cancer-free.

Ewing didn’t know what to do: how would he present himself as a talking, living, three-dimensional tumor perception? Ewing’s thoughts were disrupted when Ben’s phone rang. Ewing eavesdropped. “I know, eleven years is crazy,” Ben spoke into the receiver. I knew it! Ewing thought, and continued listening. “But it’s different now. I used to think that life stopped until I reached that single milestone where I could consider myself cancer-free. And the accumulation of cancer-free anniversaries was the gold standard.

“But what if there was no end of treatment? Like, you just lived your life with cancer where the only goal is to stay alive; to live? Am I somehow superior, or more of a survivor, just because I have this luxury of celebrating treatment's completion? No, I don’t think so.

“Did you know that some people celebrate the diagnosis? And I couldn’t even tell you when mine was. I think really we’re all celebrating the same thing: that cancer struck our paths and altered them irreparably, leading to freedom even if not from the physical disease itself.

“It’s silly, but when I was first diagnosed I drew a picture of my perception of my tumor. It was this spotted blob that was terrified because I was about to annihilate him. I used that picture to light my rage, and it worked. But what if I was looking at it all wrong, like if my tunneled approach prevented me from really living free? Now that I've been cancer-free for so long I think I wouldn't undo my diagnosis if I had the choice.

“…I know, I know, gibberish. Anyway, thanks for the cancer-free anniversary congrats, and I’ll talk to you later.”

To Ben, Ewing had been a symbol of how to destroy cancer; now, Ben needed a symbol of how to live a complete life thanks to cancer. But he didn’t need Ewing either as a friend or a symbol, because cancer was a deep part of Ben now. Ben's reminder came from within.

Ewing slouched out of site and sobbed, sobbed, sobbed through his wide open mouth. He regretted nothing of his journey. He had served his creator, left to allow Ben’s proper self-discovery, and returned to see his own purpose come full circle.

Ewing’s mouth began twitching. He hopped towards the nearest pond to look at his reflection, fearing the site of his blood. Rather than blood, he saw that his mouth changed shape and was no longer filled with terror. He was smiling.

Ewing ventured towards the forest again, no looking back, only forward to the journey in front. He understood his new life purpose: to share Ben’s perspective with the whole wide world. If everyone diagnosed with cancer drew their tumor perception then they would use that for motivation to survive, and eventually through self-discovery attain their sense of organic wholeness, like Ben had. Ewing could benefit humanity.

He thought, chuckling, that he could also benefit himself from the existence of other tumor perceptions who could finally relate to him. There was just one thing he could never benefit from. "Fuck Ben for creating me without sex organs," Ewing said aloud, laughing wildly.

Author's note: This published on my 11th anniversary of surviving bone cancer, in 2012. On my 12th anniversary in 2013, I completed this short story with two more installments. You can continue reading Ewing's journey here: Ewing Sarcoma and a Purpose Driven Life

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

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Tuesday, September 11, 2012

Hamburgers Gets Spicy

Every time I developed a new health issue, I playfully asked Hamburgers, “Now whose medical history would you rather have?” I have never stated that I’d rather have his: HIV since he was three years old and all its inconveniences, psychological heaviness, and (sometimes near-fatal) complications. Part of my bias stemmed from people generally fearing the unknown. But despite that fear, Hamburgers agreed with me: he’d rather have my cancers and all they entail. The only time he admitted that he’d keep his HIV was nearly nine years ago, when I discovered I had severe bone loss.

We no longer compare illnesses because the years and issues have piled so high that it’s not feasible or useful. He and I have—so far—demonstrated we can take anything without reaching our thresholds. I suspect the medical history of the last one standing will be the one we each prefer.

With my calorie-restricting diet (this one, not this one), and the subsequent propaganda I’ve fed to Hamburgers, we can live to 150 years old. By then I’ll be using a walking stick and he a wheelchair, mostly because his current grumpiness will worsen and combine with an absence of vanity. When we go out, he’ll make me push him. Instead, I’ll poke his chair along with my stick as he mumbles derogatory slurs toward the monkeys trained to take our lunch orders. My metabolism will be so slow that I’ll only need five green beans for subsistence, but Hamburgers will abolish calorie-restricting in favor of binging. Things will get ugly when the monkey teases Hamburgers about being overweight and he snags my walking stick, enraged. “You haven’t a clue how hard it is to live with HIV for 147 years, you Simus!” (Simian-American will be the proper term, until Sim becomes politically correct in 2149.)

The one health condition neither of us wants is chronic priapism. Can you imagine our canasta game mates’ reactions every time we jump up to celebrate a winning hand? I’ll take HIV over that any day.

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