Friday, June 23, 2017

Make It Count

This story is brought to you by Secrets of the Cancer-Slaying Super Man, my second memoir about having confidence when there’s no reason to have any in the face of deadly illness. Secrets is for ages 10 and up. If you like this free blog story, then you’ll love Secrets which is only 800 cents more!

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Walterrrrrrrrrrrsssssssss!!!!!!!!!! and I stood on the grassy hill in the University of Virginia football stadium for the final time together as students. Maybe we’d stand again later as graduates, maybe we’d sit together in seats later like proper old men, or maybe neither. Who knew how often my former dormmate and I would see each other again, which meant this shouting contest between us on a sunny and crisp Saturday afternoon in late October was critical.

At 6’5”, Walterrrrrrrrrrrsssssssss!!!!!!!!!! had a voice with enough bass to scare away some monsters, though not enough to frighten a cancerslayer. I was up for our final shouting contest despite being far from 6’5” or having the voice typical of someone that tall.

The contest went like this: before our Cavaliers kicker kicked off to start the game, the Cavalier players on the field lined up behind the ball. At that point, Walterrrrrrrrrrrsssssssss!!!!!!!!! and inhaled as much oxygen as our lungs could hold. His lungs were larger, but I always killed it on pulmonary function tests, so I was no slouch. Then, our single-breath screams began as quiet and low-toned “ohs.”

The kicker raised his right arm, signifying he was about to kick. Walterrrrrrrrrrrsssssssss!!!!!!!!!! and I raised our decibel levels like any Christopher Nolan film just before its climax. Matthew McConaughey found the black hole in Interstellar. I would find shouting glory.

The players’ feet began moving. I shouted louder. They began sprinting towards the ball’s plane. My vocal cords unleashed fury on the air and students around me. The kicker wound up his leg and made contact, lifting the football high into the bright blue sky. A screech exited my throat so loud I considered I was in the process of causing an aneurysm. But, I accepted that risk, and as the ball made its descent towards the NC State University Wolfpack players across the field, we finished our shouts and our contest ended.

“Who won?” I asked our impartial friend Dirty-D as I tried regaining equilibrium and a normal blood pressure.

Dirty-D laughed. “It was a valiant effort, Benjy,” he said, and left it at that.

That was almost 11 years ago, and Walterrrrrrrrrrrsssssssss!!!!!!!!!! and I haven’t attended a game together or had a shouting match since. He served our country in the Navy, traveling around the world in submarines with ceilings not nearly tall enough, married and had three kids. We saw each other when we could, including a few nights ago when he came up to D.C. for training. We tried pinpointing the last time we’d seen each other. At first we feared it had been over six years and then we got excited when I recalled the time I visited him at his parents’ house before his latest nine-month deployment. That was about four years ago.

Suddenly, four years since our last encounter was a good thing. Considering family, jobs, the accumulation of obligations and new friends, that made sense and didn’t sound that bad. As Tim Urban wrote in Wait But Why, he sees the friends who live in his city 10 times more often than he sees friends who live somewhere else.

Who knew how often Walterrrrrrrrrrrsssssssss!!!!!!!!!! and I would see each other again, so we made it count: no phones except his one call to his wife and the few times I logged a beer tasting in Untappd; no TV except to check the scores of the Orioles and Nationals’ games; and no debating who really won our shouting match (me).

The next time you’re with a friend who lives outside your town or city: put away your distractions for a few hours and make it count.
My good college friend and I catching up in Alexandria, Virginia

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Sunday, June 11, 2017

Google Calendar Notifies Me of Friends' Birthdays. And of Their Deaths.

Some people lie about inconsequential things like who recorded what and who peed on whom. A couple years ago, my friend Parsnip crossed the line: on Facebook, he lied about his birthday.

On the day Facebook said was his birthday, Parsnip’s timeline was flooded with thoughtful posts like “Happy birthday dude!” and “HB.” Hundreds of posts just like that from a spectrum ranging from cousins to Facebook friends he couldn’t recall ever having met.

Birthdays are meaningful and I thought deserving of a one-on-one deep conversation instead of public recognition. So I texted him, “Happy birthday Parsnip!” The exclamation point mattered. I rarely used them in writing because I thought the writer should be able to show excitement through the storytelling and not through a cheap upside down “i”. But Parsnip, who lived on the same hall as I did in our first year of college at the University of Virginia, lived his life like an exclamation point. He deserved mine.

Parnship texted back. “It’s not my birthday. I’m pranking everyone on Facebook. This is hilarious! Thanks though. My real birthday is February 28.”

This was one of many incidents in my decade-long tempestuous relationship with Facebook. Good came from this one, though: I then added Parsnip’s actual birthday in my Google Calendar as an annual event. This way, every February 28 at midnight my phone would silently notify me of his special day, and when I would wake that morning I’d see “Bday: Parsnip” at the top of my phone’s notification screen. Of course, next I would text him “HB.”

In a life filled with terrible ideas, this was among my best. I used technology to enhance instead of dilute my relationship with Parsnip. The simplicity of Bday: Parsnip and the joy it gave me knowing I could participate in his special day each year led me to add many of my family members’ and friends’ birthdays as recurring events in Google Calendar. Some friends now have kids and I want to be in their lives, too, so I added their names and birth year as recurring events. For example: Bday: Baby Parsnip (2020).

But sometimes, good things bring sad things along for the ride. On September 25 that year, I woke excited to see whose birthday joy I could share. I unlocked my phone, swiped down, and then felt ill. I saw Bday: Lings. My passionate, positive, resilient, adventurous, alive, fiercely alive friend Rachel, who I called Lings, had passed away three months before. She was among the best and my favorite people I have met.

Angry that I couldn’t text Lings “HB!” (the exclamation point was a required punctuation mark when writing to Lings), I deleted that notification in Google Calendar. In haste, I even deleted all future reminders of her birthday. In their place, I created a new recurring notification for June 11. At first, I wasn’t sure how I felt about my new notification “Death: Lings.” It seemed morbid and sad. I decided to leave it and see how I would feel when it would pop up for the first time the next spring. And when it did a year ago today, I felt more joy than any Bday notification. Seeing the date of Lings’ death reminded me of her life.

Today, I again remember. In particular, one image of her pops into my head. It is not the last one I saw of her alive, the one on Facebook with her face puffed up from prednisone and Lings generally not looking well. That is not the image by which I want to remember Lings. Thankfully, I see Lings nine months before her death. Her face is lean, like it always was until the end. She is resting outdoors against a rock—not one we climbed together, but still. And, she is smiling because she is grateful for this one more chance to feel the sun’s and her friends’ warmth.

Right now, I am smiling because I get to read about my last adventure with Lings and actually see this image as opposed to merely visualizing it. I will smile every June 11 when I see Death: Lings.

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Tuesday, May 30, 2017

If a Fish Could Talk

“The curious paradox is that when I accept myself just as I am, then I can change.” - Carl Rogers, founder of person-centered psychotherapy

You might be surprised to learn you can have a conversation with a fish that is swimming in a fish tank. I know because I once had one.

During the ages 16 and 17, I walked past a fish tank hundreds of times as I came and went to clinic at the National Institutes of Health where I received treatment for my bone cancer. The tank stood against a wall in the waiting room, in between the elevators and the bathroom. For a cancer patient, no room is more important than the bathroom, besides the infusion room which was down another hall.

One fish in the tank was bigger and, I thought, uglier than the others, which led me to follow my dad’s logic that the bigger and uglier a creature, the older it is. This one must’ve been the Donald Trump of fish.

“You lucky fish,” I told this big ugly fish one afternoon on my way to the bathroom after I finished getting my chemo drips for the day. “You can just pee right there in your tank, but I must get up to pee in a specific porcelain bowl while groggy, on crutches, nauseous and exhausted.”

The fish didn’t respond. I didn’t think he would, though he did follow me with his eyes by pivoting in his pee water.

The next morning before I got my chemo, I sat in the red cushioned chair that faced the tank and watched this big ugly fish in the waiting room. He recognized me, I’m sure of it, because he started spinning and doing flips. I guess not all big old ugly things lose their charm.

I peered around to see if anyone was nearby, but it was just me and the big ugly fish. I looked right at him. His wrinkly mouth puckered, and I thought maybe this time he might actually respond. “What are you thinking?” I said to him.

No response.

“Do you, too, laugh at the guy who gets so nervous getting his blood drawn that he sweats?”

Nothing. I was getting mad and thinking this fish was mocking me.

“What’s it like to live in your own filth and pee?”

Yes, even cancer patients can be mean.

“Bah! You’re just a big ugly fish living in water.”

With the help of my crutches, I stood up tall on my strong right leg, tucked the crutches under my armpits and started towards the infusion room. That’s when I faintly heard from the direction of the fish, “I don’t know I’m in water. What’s water?”

Shocked, I turned towards the fish tank so quickly that I almost toppled over. I returned to the chair and my attention to the talking fish. “What do you mean? You’re clearly swimming and living in water and you can’t survive without it.”

“Listen to me, I don’t have much time left as I am old.”

I knew it!

“This is my environment, it is all I know, and I can’t change it. Here, I simply am.”

I gasped. The way he said it reminded me of the meaning of that word I’m not supposed to say. “Are you . . . God?” I asked.

The big old ugly fish did a somersault, I think just to keep me waiting for his response. He was such a ham. When he settled again, he looked back at me. “No, I’m not God. I’m just an old fish living in this great big world and looking at you in your strange, even bigger world. Our worlds are different, and we each see each other’s world differently because we’re seeing it through the lens of our own world.

“You say I’m in water. I say I just am. I say you’re in a happy, sociable room where kids get to play with toys like those sticks you’re holding and the pole you push with hanging bags of colorful liquid and stamped with the biohazard symbol.

“Now, tell me about your world. I want to learn.”

And that was the one time in my life I talked to a fish. I told him all about our cancers and how we poisoned them to hopefully make them go away, and how once we were done poisoning them, we went off into a much bigger world he would never see.

Since then, a new National Institutes of Health Clinical Center replaced that one, and I haven’t been a patient at NIH in over 14 years. That fish tank is long gone. So is that big old ugly fish, though I sometimes think about him. The older I have gotten, the more I have thought that fish was trying to teach me a lesson about acceptance. No matter that fish’s faults, like his living space being filled with urea, he wholeheartedly accepted that which he could not change. And for that which he could change—in other words, the things he didn’t have to accept—he kept an open mind about, challenged himself to learn from, put in the work to improve on, and ultimately grew from until he could reach a point of acceptance. Self-acceptance is a path to happiness.

Now, some 16 years later, I want a daily reminder of that unique world I briefly inhabited, that world filled with toys like wooden crutches and IV poles. I want to always remember that big old ugly fish. And, I want to remind myself that I’m ready to radically accept those pieces of myself which I cannot change, and choose the challenging path through life to positively change those pieces of myself I can change.

So—and Mom, this is when you should sit down and brace yourself—five years after getting my first tattoo and two years after getting my second, I got another.
Benjamin Rubenstein koi fish tattoo reminding him of acceptance and his time as a patient at National Institutes of Health
Koi fish tattoo by Allen McFadden

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Monday, April 24, 2017

Parenting a Bone Marrow: Suffer, Suffer, Suffer, Suffer, Relief

I walked in on Bone Marrow as she was mainlining pollen. Talk about having your tongue tied. I entered the balcony of our apartment and there was my teenage bone marrow “daughter” injecting into herself—I mean, injecting into us—the pollen she had plucked from the air and collected in a small mountain on the bistro table.

Bone Marrow saw my shock and said, “It’s maple, our worst allergen,” as if that statement was enough for me to understand her reasoning.

Eventually, words came to my mind, and I said, “You can’t just shock our body into building immunity like this without medical supervision!”

“Hey, you’re the one who quit allergy shots after getting them for 10 years.”

“My allergist told me to.”

“I’m smarter than our so-called allergist.”

This is the life of a single father to a bone marrow. Usually, I can handle her brattiness. Usually. Since she became a tween, every day has been more challenging as a parent than the last. Must be those teenage bone marrow hormones.

When Bone Marrow isn’t making me crazy or forcing me to develop allergen-induced hives from pollen overload, she continues to impress me with her intelligence. She was already doing advanced calculus at four, and now she’s determined to work on Elon Musk’s new telepathy technology. I’m so basic that I changed all my messaging apps to make the same notification sound, and if I can’t handle differentiating an email from a text from a Facebook message, then hell no I can’t handle mind reading.

But, Bone Marrow is different, and not just because she’s a collection of frozen umbilical cord cells that populated the hollows in my bones. Bone Marrow is also different because she defies the naturists in the nature vs. nurture debate: in many ways, she has become just like me, or I have become just like her.

When I think about why Bone Marrow mainlined pollen, it makes sense. All that pollen could have killed us, but it ended up working and relieving our symptoms of seasonal allergies. I sort of do the same thing: accept the suffering if it brings relief in which I can bask. I’ll do almost anything if it brings relief and has at least a minuscule health benefit.

For example, when I shower, I turn the water cold until the end, at which point I switch to hot water. Some research suggests there are health benefits to taking cold showers, such as burning extra calories. More importantly, the relief of the hot finale makes the frigid suffering worth it and makes the shower itself more rewarding.

This was the greatest lesson I learned from cancer: life itself is more rewarding when you get to experience relief after suffering, even if the level of suffering is extraordinary.

“Health benefit my ass,” Bone Marrow told me when I first began taking cold showers. “Each cold shower probably burns only an extra 1.479 calories. Even I’m not stupid enough to endure suffering for such a tiny reward.”

The shit-talk never ends with my daughter. I returned the volley: “I guess I just have a greater tolerance for suffering than you do,” I said.

“Whatever. You’re still a wuss compared to people who would keep the water cold and who actually like the suffering, whereas you despise the suffering and just like the relief afterwards.”

She was right. She's almost always right.

“True,” I said. “But, those people are crazy.”

Bone Marrow took a moment before speaking. “100 percent agreed.”

And just like that, Bone Marrow and I sat down on the couch to watch the NBA Finals together, just father and daughter.

And so goes parenting a bone marrow daughter, who turned 14 years old today: suffer through her shit-talk and insane behavior in order to experience the relief of agreement and calm and love at the end. Bone Marrow both represents life and gave me my third chance at it, and I am forever grateful for her. She may decide to mainline pollen again next spring, or mainline fungal spores this fall to gain relief over that allergy. Who knows, maybe she'll discover ESP and get in LeBron's head to relieve us all of another Warriors-Cavaliers NBA Finals. Whatever Bone Marrow does, no matter how seemingly absurd, I'm with her. She and I are in it together.

Unless she makes me report the true meaning to another James Joyce novel, in which case I'm getting another transplant as there is no relief when I inevitably fail at that impossible task.

On this day 14 years ago, I received an umbilical cord stem cell transplant to treat myelodysplasia. This weekend, I celebrated with family, friends and candy, which I only allow myself to eat twice a year . . . suffer-relief.

Benjamin Rubenstein and family and friends celebrating the 14th anniversary of his umbilical cord stem cell bone marrow transplant at Churchkey in Washington, DC

Appearances
I’ll be speaking at The Way Station in Brooklyn tomorrow at this Sexology on Tap and Taste of Science event. The show starts at 7:30.

Social Media
I won a local speaking contest and I feel like I cheated by speaking about an unbeatable topic: my dad’s quirks.
How I created the mantra Justify Nothing and what it means to me.

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