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.

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.

Appearances
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.

Appearances
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…