Wednesday, September 6, 2017

Hi There, I Write Your Stories, I Mean ‘Our Stories’

I write stories about my coworkers. Collectively known as "Our Stories," a new one publishes in my organization's newsletter every other week. Yesterday, the newsletter published a story I wrote about . . . myself. Here is that story with some redactions.

* * *
Every morning after waking, I prime my body and mind for the day: meditate for 20 minutes, perform 20 pull­-ups, and then jump on a mini trampoline while singing whatever pops into my head. I then move to the kitchen where I prepare four eggs mixed with hot sauce and grated cheddar on a pan coated with butter, and pour-­over coffee. Once my breakfast is ready, I enjoy it at my desk while reading the news. Fifteen minutes later, I set the empty plate aside, bring my mug closer, and repeat a mantra that primes me for what comes next: writing. No email, notifications or distractions of any kind, just writing.
I thrive on routines. If my day consists of writing, coffee and an adventure, then that’s a perfect day I could live repeatedly. Photo taken on July 2, 2017, while hiking with friends at Mary’s Rock in Shenandoah National Park, Virginia. In the photo I am holding forearm crutches which give me freedom to explore the world despite not having a left hip bone. Photo by Heather Durosko.
Writing is solitary. It’s just me, a giant coffee mug, a laptop, and Daft Punk playing through my 15-watt Bluetooth speaker.

This is my craft, which I chose without realizing it. That unconscious decision took place one Saturday night in July 2004 when I was 20. I was working at a Hollywood Video in my hometown Manassas, Virginia, during summer break. My job title was “guest services representative,” which was a fancy phrase for “DVD unlocker.” I wasn’t a stellar movie rental store employee. I was slower than my coworkers at checking out customers. Three times I forgot to give back a customer’s photo ID only to see her return for it about an hour later rather irritated. And, the store manager once chided me for showing Top Gun instead of Space Jam on the store’s TVs, which lined the top of the purple walls.

From Top Gun: "Maverick, it's not your flying, it's your attitude. The enemy's dangerous, but right now you're worse.”

I guess I wanted to be the maverick of movie rental stores.

That night around 10 p.m., still with two hours left to unlock DVDs, I had an epiphany. I had to share this in person with one of my closest friends, so I texted Hamburgers to see if he would still be up at 1 a.m. He texted back that he would. Of course he’d be awake; Hamburgers usually went to bed around 6 a.m. unless his Xbox overheated first.

When we closed the store soon after midnight, I drove to Hamburgers's parents’ house, and he met me outside in the cul-­de-­sac.

I got out of the car and went to stand by the hood, because this felt too important to state while being seated. In the darkness, it was hard to see Hamburgers's eyes so I focused mine just below his curly red hair. Then, I came out with it. “You and I should co­-write a memoir.”

The idea had nothing to do with unlocking DVDs, and I’ll never know how or why it entered my consciousness hours before at Hollywood Video. In fact, it had been 11 years since I last wrote a story. That was about the Chicago Bulls star Scottie Pippen playing basketball one­-on­-one against an extraterrestrial. I even illustrated it. But under the bright lamps of a Hollywood Video store and few stars that were visible through Northern Virginia’s light pollution, I felt compelled to write again, and I knew Hamburgers and I had a story to tell.

Though we’d known each other since the fifth grade, we became close when we were 17 due to our shared understanding of illness. While I was getting treatment for my first major illness, a bone cancer called Ewing’s sarcoma, Hamburgers revealed to me in secret that he had acquired HIV from a contaminated blood product to treat his hemophilia when he was 3. Later, while at the University of Virginia together and after I had recovered from my second illness, a cancer of the bone marrow called myelodysplastic syndrome, we would stay up all night talking. We discussed whether to hide our diseases from new friends and romantic interests, how our diseases gave us perspective, and how they made Jujyfruits more rewarding. Man, we loved candy.
Me (left) and one of my closest friends, Hamburgers, watching NCAA March Madness games in Alexandria, Virginia, in 2017. Once stricken with life¬threatening illnesses, I’ve now been cancer-free for over 14 years and Hamburgers’s viral load, a measure of the amount of HIV in his blood, is undetectable.
Hamburgers looked at me for some time before responding to my epiphany. Finally, he said that yes he would write this book with me and to get started; he’d catch up. Ecstatic, I drove home where I handwrote 500 words before falling asleep at 2:30 a.m.

The next morning I looked at my work. It was atrocious, and I don’t just mean my nearly indecipherable scribbles. It may have been the drabbest 500 words ever written. But, I kept writing—I had already started, so why not finish? Had I known a published memoir was typically around 85 thousand words or that Hamburgers didn’t even plan on writing the book with me and only agreed as a way to encourage me, maybe I wouldn’t have continued. But I did, and I never stopped. I’m now spending a chunk of my mornings writing my third book as a student in University of Southern Maine’s Stonecoast Master of Fine Arts in creative writing program.

I plan to continue my morning routine forever. This is the path of writing solitude I’ve gone down, and even if only two people who I call “mom” and “dad” read my writing, I do it because I believe it is my best way to make a difference and I love it.

Then Our Stories happened, and suddenly my writing was no longer so solitary.
For many years I refused to discuss my past illnesses, even though they consumed much of my adolescence and helped inform the person I’ve become. Since I began sharing my story in writing, conversation and formal talks, I’ve connected with many people. That connection—not to specific individuals but generally relating to others through our shared struggle—has been among my most rewarding experiences. This photo was taken in August 2014 while being filmed for an upcoming documentary which will feature me and other young people victimized by cancer. Photo courtesy of Cancer Rebellion.
A little over two years ago, the office where I work as a writer and editor wanted to publish a story series about our organization's employees. They asked me to write the first article. I can’t even remember how we found her, or if she found us, but I’ll never forget interviewing and learning about S.H., the officer whose mother nicknamed her “mud princess” and who wore waterproof mascara at special ceremonies. I spent more time writing S.H.'s story than most of the hundreds of other stories I’ve written since that night in July 2004.

Since then, we’ve published 53 Our Stories articles, of which I’ve had the privilege to write 51. I’ve learned and written about people like R.P., the most meticulous researcher and clearest speaker I know, and M.R., who I hope will be the artist if ever I’m the subject of a six­-foot-­tall painting, and T.B., who tells the best stories of his adventures and unfathomable runs.
Some of my friends and me (second from right in back) in University of Southern Maine’s Stonecoast Master of Fine Arts in creative writing program. All of us (except the person second from left, who transferred to the University of Iowa Writers' Workshop) will graduate in January 2018. Though my background is in writing memoir, I chose the program track that emphasizes literary fiction. Writing fiction is harder than I imagine abstaining from a case of Jujyfruits sitting directly in front of me would be. Photo taken January 2016 in Freeport, Maine.
The reasons why our colleagues have chosen to share their stories have differed, but maybe they all understood what I learned last month while traveling around Ireland by myself: sharing an experience matters as much as the experience itself. Sharing gives them more meaning, while keeping them quiet diminishes their value to ourselves and deprives others of finding their own value in them.

However, for whatever reasons our colleagues have shared their stories, I’m the one who has reaped the greatest reward. Hearing these different struggles and successes, and trying to find the truth in them through the written word, makes me a more empathetic and better person. These are not S.H.'s and my stories. They’re Our Stories, and writing them has been the most rewarding project of my career.

I want to thank you for reading Our Stories. By reading them, you’re giving me the opportunity to keep doing what I love. I look forward to learning and writing about more of you. Whether or not you know it yet, you have an extraordinary story to tell.

Leia Mais…

Monday, July 31, 2017

Road Tripping Ireland: Drive on the Left

In July, I spent one week in Dingle, Ireland, where I participated in my fourth residency in my fiction-writing program. After residency, two friends and I explored Dublin for a few days, and then I rented a car by myself to travel around the southwestern part of the country for several more days. Of course I made a video of my adventures. Enjoy. You can watch it on YouTube or directly below if your web browser allows.

Ireland: the land of every shade of green covering rolling hills, the kindest and most welcoming people, and a shocking quantity of pubs.

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What kind of life do I want to lead? My emotional reaction after reading When Breath Becomes Air.

Leia Mais…

Sunday, July 23, 2017

See Where the Heat Is

“You should request Sarah to be your mentor next semester, she’s fabulous!” said Susan Conley, the visiting workshop leader for my fourth residency in Dingle, Ireland, which ended just over one week ago.

My upcoming semester is a biggie—I’ll complete my thesis, which I hope becomes a published book of short stories.

I followed Susan's recommendation and emailed Sarah and asked if she’d like to work with me. But the next day, even before Sarah responded, I said to Susan, “I don’t want to put you on the spot, but I was thinking: would you like to work with me?”

The typical residencies for my Stonecoast creative writing program in Maine are small enough to know who everyone is yet large enough not to be able to befriend everyone. My recent residency in Ireland included 10 students and two faculty members, a size that allowed me to become besties with everyone. On the second day of residency, I realized something: Susan was amazing.

Susan was also on board with my idea for her to mentor me. “I was thinking the same thing last night!” she said.

With Susan’s help, over the next four months I will revise my short stories into about 125 pages of beautiful prose. Well, the 125 pages will be all me and Susan, while the beautiful prose will require the additional help of a leprechaun. During this time, I plan to tell my friends to temporarily fuck off so I can write. Except on NFL Sundays. Priorities.

During our intimate week at Bambury’s Guesthouse on the Dingle Peninsula, I learned more about writing than if I'd read James Joyce's novels ten times each. One cool thing resulting from writing and reading is that, sometimes, you learn about yourself and the human condition, and the lessons apply elsewhere. Here are some of those writing lessons I learned during my residency in Ireland (these are not direct quotes). Consider whether you can use these lessons in your own life by substituting “language,” “metaphor,” etc. with “relationship,” “prostitution ring,” or whatever you want:

Susan says:

  • Find where the heat is. Sometimes, the heat can be on the language, but it’s often on the tension.
  • Tension should look like an EKG report, full of little spikes overlapping the story arc.
  • The first sentence of a story is an embrace. It should have an electrical current that shocks and illuminates.

Kevin Barry, our guest presenter who has won the International Dublin Literary Award, says:
  • It takes 10-11 years for the emotional charge to come out of an experience. That’s the length of time to feel properly embittered.
  • Everything you start, even if it sucks, finish it. Writing a good story only comes after you write bad ones.
  • The bits of your writing that make you recoil, feel embarrassed, or feel vulnerable, those are the bits to keep. Dig deeper.

Ted Deppe, one of Stonecoast’s resident poets, says metaphors:
  • Align with the way the brain works. Writers use them to convey information and give the reader pleasure.
  • Create a veil; they create distance before bringing the reader back through.
  • Show readers how the writer sees the world. They’re not just to make the words pretty.

Lastly, Susan says fiction and memoir share many of the same features and the two genres can be blended. For example, a memoirist may use fiction to protect his or her loved ones. Ted agrees and says that poets make things up to tell the truth. Both Ted and Susan gave us a few minutes to complete different writing prompts during our workshops. Below is my favorite writing in response to one such prompt. Is this memoir or fiction? A writer never tells...unless you treat him to Irish whiskey.

Her eyes lock with mine. “Want to climb?” she says.

Of course. I tie my figure eight knot as she secures the other end of my rope to her carabiner. How long has she climbed? A few years. What does she do? Raises money for good causes, only the things she wants to and nothing else, and smiles. Why does she smile so much? She both gets joy from and gives joy to others.

Do I want to start climbing? she asks.

Yes, but first I must note that my previous observation that it can take just three minutes to think I’m in love has now been reduced by one minute.
Stonecoast in Ireland Summer 2017 Crew
Me and my fellow Stonecoast in Ireland students during the summer 2017 residency in Dingle.
Related Stories
See the video I made after my first residency, and read about the lessons I learned from my second and third residencies.

My Next Big Thing
The Story Collider plans to turn the story I told in September into a podcast. Check back here in the coming weeks to see when the podcast airs.

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Leia Mais…

Wednesday, July 5, 2017

Scrapping (Sorta) Like Conor McGregor

Yesterday morning began like most others for me: meditate or pretend to, perform 20 pull-ups, jump on a trampoline, eat eggs, drink coffee, read my coveted 15 minutes of Trump news, and then switch my phone to “do not disturb” and set its timer for 60 minutes. It was writing time.

That’s when my morning became unique: I couldn’t crank out words. I was stuck on one paragraph in the middle of a 22-page behemoth essay I’m revising and hoping to get published in GQ, Rolling Stone or Playboy . . . dream big.

Hey brain, ignite! I read the writing note I had left for myself the day before, and then the last page I’d written, and then the last three pages I’d written, all in an attempt to point myself in my essay’s intended direction. The problem was I already knew where my revisions were going; I knew exactly what I was trying to say. I just didn’t know how to say it.

So, I sat at that keyboard and visualized the scene from six years ago about which I was writing; played music that reminded me of the summer of 2011; considered every single word I typed; clarified both my writing and thinking by asking myself simple questions like “Why?” and “What does that mean?” I scrapped, and by the time my timer beeped, I’d typed 164 words inside seven long sentences.

The morning was mine, despite the paltry 2.73 words per minute. My essay now at least had a draft of one of its critical moments of vulnerability. More importantly, my journey towards those 164 words led me to learn something about myself and the human condition.

Time is everything, but sometimes all we need is to demonstrate both patience and scrap to get what we want. Well, demonstrate patience and scrap, listen to the Foo Fighters, and curse at an LCD.

Life Update — I’m going to Ireland!
A few hours ago, while walking towards my Lyft which would take me to Ronald Reagan Washington National Airport, I said, “Good afternoon,” as I approached a panhandler sitting on a bench.

“Afternoon. You got McGregor?”

I didn’t hear the last word he had said. I stopped and turned around to get clarity. “Do I got what?”

“Conor McGregor. You remind me of him . . .”

Because you think I’m as strong as him?!

“. . . Because of your beard.”

I thought Floyd Mayweather would win in their future boxing match and told this man so.

“I got McGregor. He’s scrappy,” he said.

Sometimes, life gives us signs. I was headed to Ireland for my fourth residency in my Stonecoast creative writing program. McGregor is from Dublin. I thought about how, after my incredible safari in Tanzania last year, I rooted for Tanzanian athletes in the Olympics. Assuming my time in Ireland, which will begin some eight hours from now as I sit at a bar during my layover at John F. Kennedy International Airport typing this story, will also be incredible, I’m going to root for McGregor.

“You changed my mind,” I said. “Bearded dudes unite.”

“August 26, let’s go! I bet you’re scrappy, too!”

I wished the man a nice afternoon and walked away towards my Lyft. On August 27, the day after McGregor’s bout, I’m going to visit that same bench in hopes of seeing that man. We’ll need to discuss the fight.

My friends in my writing program and I will be reading on July 13 at 7:30 p.m. at the Dingle Bookshop: 2 Green St, Dingle, Co. Kerry, Ireland.

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Leia Mais…

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!

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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Leia Mais…

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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Leia Mais…

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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Leia Mais…

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

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.

Leia Mais…

Monday, March 20, 2017

If Everything Took 15 Minutes: Considering Time

I always thought about time—How long until we get there, Mommy and Daddy? . . . Fifteen minutes, Benjamin . . .no matter the destination, my parents always proclaimed the car ride would take 15 minutes—but time assumed new significance when I was 16.

I remember, then, scanning the ceiling and thinking about time. Unlike my bedroom nowadays, in which even my computer’s LED light is covered with a blackout sticker, my hospital room dazzled with light streaming in through the door’s small window and from the IV machine’s red digits telling me fluid was entering my bloodstream at 150 milliliters an hour. The light pollution may have prevented me from falling asleep, but it also allowed me to see all those rectangles on the ceiling which I then counted like sheep in hopes that the repetition would overcome the light’s former-named effect.

My counting eventually did lead to my slumber, once my mind settled and stopped wandering on the number of cycles of chemo remaining and the days I’d be hospitalized and the months until treatment ended and the pretty girls at school whom I crushed on but was too timid to speak to and the time I would lose to cancer and how it would be cool if cancer’s finality took just 15 minutes to reach.

Now 15.5 years free from bone cancer and nearly 14 years free from cancer of the bone marrow, time means everything to me, though, I still sometimes think of it in the same way as I thought of it as a kid. I can’t help it; after all, I am still [super]human.

How much longer until I earn my MFA in creative writing?

How much longer until I finish my full-time-work-and-school schedule and am no longer a hermit?

How much longer until I have the time to watch TV series again?

I also think of time in the same way an adult thinks of time, which means, like great fiction, multiple things. We adults think about not just when something will end—whether it’s 15 minutes or years—but also how long until something starts. Sometimes, adults also think about how much longer we have until something is gone forever, as in, When will my aging ovaries stop my biological clock from ticking? or, What is the half-life of semen stuck inside a plastic capsule and frozen in liquid nitrogen at the cryobank?

Time is our most valuable resource. Snap Inc. stock could crash and cause us to go bankrupt after we transfer our life savings into it, but with time we could make it all back on Facebook stock. Our significant other could ghost us, but there’s always more swipe-rights. But, if we run out of time, then that’s it (at least I think that’s it).

I just finished reading The Lovely Bones, a 2002 novel about a teenage girl who, after being raped and murdered, watches from heaven her family try to cope. I completed the second half of book in one sitting, first while sitting on my couch and then on my balcony and then back again to the couch. [Continue reading after the jump]

Reading night using Kindle while in suburb of DC
Kindle Touch, JBL Charge 2+ Bluetooth speaker playing ambient instrumentals, the lights of Arlington, Virginia, and the occasional Black & Mild make for a perfectly solitary and impactful evening.
While dedicating myself fully to The Lovely Bones, I thought about my next-door neighbor at my first residency, DitchedUsForIowa, who could sit/stand/pace an entire day away reading. At that time 14 months ago, I couldn’t fathom.

I thought about my friend, Bluosity, who, even though she graduated from Stonecoast two months ago, has challenged herself to read one book a week in 2017. Did I mention even though she already graduated?!

Bluosity thinks she’s doing good by reading, because it teaches her about the human condition in ways nothing else can (my words), and because it reminds her we’re not alone (her words). “It's a paradox,” Bluosity writes in her blog 52-18, “to be physically alone while we read, but to feel as though we're with someone—even sometimes, an entire village—and to gain a sense of community, a heart-pat, so to speak, to tell us that everything will be just fine.”

While reading The Lovely Bones, I thought about whether I was doing myself good by sacrificing all activities I could have otherwise been doing. I thought about whether I would continue reading for four hours at a time on a 52-degree clear-skied evening after I graduate. I thought about whether I could continue to go without watching a single television series, since I quit them all cold turkey. I thought about whether I could never look at my Facebook timeline again, since I quit that, too, and replaced it with placing telephone calls to my friends.

I think, Yes.

I thought about time and whether reading is a good use of it—whether I’m doing good by spending one entire evening reading, one evening out of my remaining 17,034 if I live to 80, one evening out of my remaining 2,434 if I live to 40, one evening out of my remaining 399 if I live to 15 years free from any cancer.

I think, Yes.

I think there is value in considering how we spend our time, which, if we are among the fortunate ones in the world, is more of a choice than not, even if we don’t realize that as we transition from day to day.

Just don’t try to take away my 15 minutes of Trump news each morning. Some things are not sacrificable.

I’ll be the keynote speaker at the Children’s Hospital of Wisconsin 2017 Living With Sarcoma conference on April 1 at the Milwaukee County Zoo. See you there?

Social Media
Visiting the Library of Congress—think I can find my books here?
My bibliography just got way more awesomer.
"Living with cancer" notebooks, pre-digital.

Leia Mais…

Friday, January 20, 2017

Where Common Decency Crumbled, and It’s Not Where You Think

As published on The Huffington Post

I grabbed a kosher beer from the refrigerator and then found my chair in the back of the hushed room just before the first presidential debate. Now was not the time to ask what made a kosher beer kosher. Now was not the time to say anything except, “I’m with her.”

My very Jewish, very liberal friend, Meira, had invited me to her debate-watching party along with what looked like 15 other white, Jewish, liberal, white collar young professionals I’d never met before. I scanned the room in search of someone, anyone else holding a kosher beer. There were none. Instead, I saw plates topped with classic types of Jewish food. You know, the ones in which the dominant macronutrient is the carbohydrate, which I only eat before exercising and drinking. But not before drinking kosher beer.

I uncapped my drink and tried concentrating on the television, but brilliant little LED displays flashed around the room and distracted me. Everyone else was on their phones.

“What’s going on?” I whispered to Meira.

“I’m live-tweeting the debate,” she said quietly. “And some other people are tracking FiveThirtyEight. It updates like every 15 seconds.”

I may have fit in with this group on paper, but I felt out of place. Keep reading Where Common Decency Crumbled, and It’s Not Where You Think

Leia Mais…

Monday, January 16, 2017

The Literary Citizen

I just got home from my third residency in the Stonecoast creative writing program where I learned writing and bonded with friends (over writing) every moment, from waking until slumber, and I realize now I must respond to texts from a week ago. Halfway through today I will cease being productive and slow my brain. In that calm, I hope my synapses strengthen their hold on the lessons I learned. Here are some of those lessons (in my own words) which you can use in your writing and in your life. These are courtesy of two Stonecoast faculty members, Justin Tussing and Suzanne Strempek Shea, who don’t just mentor me, but really teach me.

Me and my Stonecoast friends in our creative nonfiction workshop. Photo by Suzanne Strempek Shea.

Justin says:

  • Character is fate. Who we are is who we become.
  • There is value in looking at poor writing with contempt, knowing you can do better.
  • The ending of a story must be both surprising and inevitable.
  • You’re often exchanging one thing for something else. That something else must have equal or more value.
  • If a character gets close to a fear, don’t turn from that fear. Investigate it.
  • The worst thing we can do as writers is to have an idea. Like, I want to write about loneliness. Instead, follow the character. Put him in a room, get him stuck, and watch him squirm.
  • You must love your characters, and not just in a “he’s charming” kind of way. You must love their faults.
  • One reason we accelerate scenes in our writing is because we don’t trust the reader will care enough to read on. They will.

Suzanne says:

  • Your firsts—like your first day at a job, or your first day in a new place—are huge. Stay in those scenes.
  • There’s always two things the reader wants to know: the story, and what is happening inside the characters’ minds and hearts.
  • You’re always writing for people who aren’t sighted—explore the other senses.
  • Always return back to why you are writing this story.

Lastly, Suzanne asks us to be good literary citizens. I think she means it is our responsibility as writers to share our passion for the art, support fellow writers, and benefit the world with our craft. I love this idea of giving out that passion without requesting anything in return. So if you see random sticky notes with short bursts of writing or a quip then I was there. Unless it’s dull, in which case Rosie O'Donell wrote it.

See other writing lessons from my second residency.

I’ll be the keynote speaker at the University of Wisconsin’s 2017 Living With Sarcoma conference on April 1 at the Milwaukee County Zoo. If you’re interested in attending then here’s information on last year’s event.

Leia Mais…

Monday, January 2, 2017

In a Word

My first published piece of creative nonfiction literature also happens to be quasi poetry. Here is me, in a word.

As published in apt

Favorite drug: OxyContin. Second favorite drug: Cinnabon. Most painful drug: chemotherapy. Second most painful drug: Cinnabon. Drug I consumed most: Benadryl. Person who has consumed most Benadryl in world history: me. Number of uses of Benadryl: infinite.

Favorite food: pizza. Favorite topping: pepperoni. Practice never followed: kosher. Feeling experienced during bar mitzvah: nervousness. Substance wished knew about during bar mitzvah: whiskey.

High school sport: tennis. Sport too short to succeed at: all. Sport too tall to succeed at: none. One and only thing short people are better at than tall people: lifespans. Percentage chance fabricated the last sentence: fifty. Favorite teenage activity: driving. Favorite musical artist when driving: N’Sync. Sentence you should keep to yourself: previous. Keep reading In a Word

Leia Mais…

Sunday, January 1, 2017

My Curated 2016 Review

There’s too much content: you post too many tweets that don’t offer value to anyone whom you don’t call “Mom,” and you post too many photos of your baby sitting on a carpet. I’d like to create a movement for 2017. In this movement all adopters will be thoughtful in what they share with the world. We will share less, though what we share will have more impact on others.

Be prepared, though, to become less popular, because social media rewards those who post the most. You will not gain as many followers as you did in 2016. People may forget you exist (until you post that killer photo of your baby sitting on the carpet with his smile just right), but don’t worry because two minutes after anyone not named Justin Bieber posts anything we forget they exist.

If you adopt this movement then you will see two benefits. (1) You’ll gain headspace from no longer having to constantly think, At what angle should I capture my baby sitting on the carpet? (2) You’ll improve the lives of others by giving them a tad of inspiration, joy or amusement.

Let’s call this movement curated and I’ll start now: here are my single bests of 2016.

Best Photo
Dec. 30 was my birthday and I spent the day with two of my favorite people, whom I call Mom and Dad. We went out for my favorite food (pizza) and saw my second favorite movie of the year (Passengers). It was a good day. It was a great day. Mom captured my seven-month beard. I do not know how much longer I can keep this beard and it needs to become part of historical record (meaning in your mind for two minutes).

Benjamin Rubenstein celebrating his birthday and Hanukkah with his family and epic beard

Best New App
In the spring I began meditating with Headspace for 20 minutes a day. I’m a serial committer so I’ll now meditate daily, forever. Headspace has taught me focus and flow: meaning, when it takes me hours to respond to your email or text it’s because I’m trying to remain undistracted so I can complete my work, and not because I do not like you.

Best Book I Read
I realized I love literary fiction after reading The Girl’s Guide to Hunting and Fishing. In the book nothing blows up, nobody gets murdered, and yet l became consumed by those characters. And that’s just it: life isn’t about what you do but rather about how deeply you connect with others. (I mean, it’s a little about blowing up your gingerbread house with firecrackers, but that’s a small part.)

Best Movie I Watched
The characters in Hell or High Water grow on us slowly, like an unattractive first date. The film shows us who they are instead of telling us. We see their positive attributes as well as their faults, and realize everyone has both. Plus, g-damn the ending is awesome.

Best New Friend
No answer because I don’t want to get cut by people I don't name. So I’ll offer this photo instead. I adore my creative writing program at the University of Southern Maine, and this photo taken at my first residency in January represents the skills, memories and friends I’ve gained there.
Residency with fellow "firsties" at Stonecoast MFA program at University of Southern Maine

Best Accomplishment
My favorite part of my job is interviewing people who work for my organization and writing about their lives. One such employee told me about escaping Cuba as a little girl to come live in America. The trauma of the experience blocked her ability to remember much of it. A while back—she thinks maybe eight to 12 years ago—she asked her mom to tell stories of the family’s departure from Cuba and to record them on cassette tapes. The employee’s mom agreed and doesn’t know that after all these years her daughter still hasn’t listened to any of them. The tapes remain in a container in a drawer in the employee’s bedroom. She has asked her mother, now 77, to record even more tapes and her mother again agreed, but she first needs her daughter to tell her where she left off in telling the story. The mother can’t remember. It’s been so long. The employee hasn’t listened because she’s afraid. “I know listening is going to make me really sad so I have to be in a place where I can listen to those tapes,” she told me.

She later told me that our interview and the story I then wrote about her may have given her encouragement to be brave enough to listen. Instilling that courage was my best accomplishment.

Best Quote
“What’s on the other side of fear? Nothing.” — Jamie Foxx on The Tim Ferriss Show podcast. I’m getting this quote tattooed on my penis to stave off the evolutionarily-ingrained fear of rejection.

Best Goal of 2017
Ask the kind of questions to understand the depth of others so I can appreciate them more; so I can empathize with them.

Most Valuable Thing I Can Offer You for 2017
Consume content like books and movies and photos of your friends’ babies sitting on the carpet not just for amusement, but to learn from them. How did it inspire you? What have you learned to do or not do from that experience?

Then, record what you learned. Why? Because just as you forget the tweet from two minutes ago, you forget lessons you’ve learned. After recording them you’ll always be able to refer to them and re-learn those lessons.

*I use Google Docs, which is web-based and not susceptible to your hard drive being blown up. I label the file “Journal [Year],” and each entry includes a date and a hashtag with a label (such as “dream,” “inspiration"). The hashtags categorize your content and will help you differentiate theme-based journal entries from other entries that just happen to have the word “dream.”

Best Piece of Writing
I want to name a shitty short story I wrote in my writing program, because I need to fully embrace that it is OK to write shitty first drafts. But instead I’ll say the story that is supposed to publish tomorrow, so come back.

Happy curating and happy New Year!

Leia Mais…