Tuesday, August 25, 2015

Why Do I Have to Take My Pills, Mommy?

He looks over at his brother and back to his plate. Then asks, "Why do I have to take my pills?" He says this to me inquisitively as if a light has appeared above his head realizing his older brother next to him did not have the same mealtime ritual.

What do you say to a three-year-old with Cystic Fibrosis when he asks an inevitable question? One that you try to avoid thinking about but also one that you can't stop thinking about. A parent of a child with CF must be one of extreme patience who realizes every action and reaction can make a huge difference in the response of your child.

It is at this point when the question hits hard. I sink into it for a while. A moment to let it settle into my insides as a heavy sigh escapes from my breath. "Well, ..." I begin...as I think out a response...

He waits patiently for the response behind his turquoise eyes and pale hair. Its still hot for late August and he sits in shorts, no shirt. I can't help but notice the hint of ribs against his lean, untanned body. The doctor says he is in the 13th - 15th percentile for his age and weight. The last three appointments with his pulmonologist, she has expressed concern over this- "Weight and lung function are tied together. Just see if you can get him to eat 500 more calories per day." We shared a food chart of his eating habits. This last time, we met with the dietitian on staff. Its all about adding in more calories, boosting fat. We feed him five times a day, packing it in with each meal and snack and he keeps getting taller. This percentile isn't changing. We know that she might suggest the food tube next so we are adamant about getting as much food into him as possible to get him to gain weight.

My tears saturate my eyes. I turn away from him for a moment, away from the dinner table, away from the four capsules of Creon in a small cup near his square plate. I bite my cheek for a moment and swallow hard. The tears slide down my throat and I swallow all my thoughts about it.

At this point, I realize that however I respond will determine how he eats his meal. He's already a slow and very picky eater, but what I say might change how he eats all of his dinners and breakfasts and lunches and snacks from now on. What I say had better be good.

The food waits patiently on his plate- two pieces of chicken sausage with ten grams of protein in each link, fresh cut strawberries, some spinach, a few pieces of cheese and a bowl of Honey Nut Cheerios cereal and milk enhanced with heavy cream and four scoops of calorie-enhancing powder. This is a common meal, nothing new today. He's read about digestion. He clearly understands the process and how we get energy from food. And this meal is one he's eaten many times before without the need to ask this question. Why now at the dinner table before bedtime?

Only moments have gone by but it feels like my mind has been going through this moment forever. Planning, thinking, rethinking. I wonder how much of an answer is too much, how much is too little. Is this the inevitable moment when we sit him down and explain Cystic Fibrosis? This dreadful moment his incurable illness is revealed? No. It is too soon for this type of talk. Much more planning goes into that type of talk than the fear that he might decide he doesn't like chicken sausage and strawberries and spinach and the whole lot tonight because he "doesn't like them anymore." It has to be enough of a response to satisfy his curiosity. It has to be understanding enough that he doesn't feel strange or different because he has to take pills for every meal and snack. It has to be broken down enough so that his three-year-old mind can understand. Would making mention of the digestive process help? Explain how the enzymes actually work? Is this too much at the dinner table before bed? What about the tone of my voice- more serious or lighthearted?

I turn toward him while preparing a cup of tea and decide to use a casual tone of voice. I need to make him understand that it is just something that is as ordinary as talking, or chewing or breathing. He looks up at me with those blue eyes and inside I melt. His brother looks at me too; his hazel eyes searching for an answer. I note the obvious contrast between their two silhouettes as they sit side by side. His big brother is exactly 17 months older and his height and weight are in the 80-90th percentile. He's almost an entire foot taller and more than fifteen pounds heavier. He doesn't have CF.

I pour the hot water into my cup and dip a tea bag into the water to give myself one last moment, one last thought of how to say this. And then I go for it:

"Some people take pills with their meals and snacks and some people don't." Then, I shrug to make it seem like no big deal.

I look waiting for his response. Will he ask another question? Will I need to go further down the rabbit hole?

"Okay mommy," he smiles. "I love you." Then, popping all four pills into his mouth at once, he drinks them all down with one gulp and then starts to spoon in his cereal.

"I love you too, buddy," I say as I lightly sigh relief. But I can't help but wonder, when this will come up again.

Sunday, September 21, 2014

A Politically Incorrect Christmas

You can say there’s no such thing as Santa, but as for me and the audience of “The Eight: Reindeer Monologues” at Paper Kite Press in Kingston on Dec. 12 , we believe we’ve seen the real Kris Kringle and his eight reindeer … in a darkly comedic and sinister work environment.

So this is Christmas … and what has he done? Mr. Claus has been a sadistic pervert who molests poor little reindeer on the job while Mrs. Claus has been drinking herself into a daily eggnog stupor and pining over the male reindeer, making an embarrassment out of herself during holiday celebrations. Who knew the North Pole had so many problems with sexual harassment in the workplace?

As the accusations begin to unravel, the eight reindeer, a group of seriously flawed characters, stand before the audience, much like at a news conference, each professing their own points of view in this extended one-act directed by Ilvin Nieves and Kimmie Wrazien of the Bracken Theatre Company.

Upon the opening of the play, Alicia Nordstrom sets the tone and plot. Nordstrom plays the lead reindeer (Dasher) in the “Elite Eight” and does a convincing job of ranting like a senior-level worker about the ridiculousness of the accusations in her workplace and gushing about her amazing on-the-job feats.

In the second monologue, Ilvin Nieves “makes the yuletide gay” with Cupid, the only openly homosexual reindeer in the elite eight. Nieves convincingly flames around the stage, dirtily discussing Santa’s secretly placed candy cane tattoo and North Poles. Under these strange circumstances, Neives convinces us that Cupid is happy that he is the only reindeer that hasn’t been molested by Santa, and his overly boisterous tone hints that his open homosexuality is what keeps him safe.

As the monologues evolve, the play becomes more sobering as confessions and loyalties become clear. The character of Blitzen is an extremist who is protesting Christmas this year and is bent on a walkout. Unfortunately, Donna Vojtek’s Blitzen was timid and line-reading compared to the angry feminist the audience might have expected from such powerful lines as, “When a doe says ‘no,’ she means ‘no’.”

Also, personally embarrassing situations become clear as the audience is lead to wonder, what is the truth about how Rudolph got to lead Santa’s team that year? Apparently, once a part of the team, Rudolph did join in the reindeer games and was permanently traumatized as a result. The tension in the room rises as Billy Joe Herbert, who plays Donner, Rudolph’s guilt-ridden alcoholic father, distressingly admits the sick details. While we do feel pity for his character, Herbert himself needs to work a bit more on his blue-collar noon drunk.

After the complex and unrepentant Wrazien (Vixen) speaks a captivating fall-down wine-drunk, emotionally detached and unsettled final monologue, the audience members are left to squirm uncomfortably in their seats. Especially when they hear her profess a very real and distressing question: “Why is it a woman is only a slut if she meets with some degree of success?”

Overall, all the actors, including David Giordano as Hollywood (formerly Prancer), Will Moore (Comet) and Christine Skiro (Dancer), bring depth and emotion to their roles so well that you may forget that they’re wearing bright red antlers. This play was definitely not for children, and now that I’ve warned all you friends and neighbors to watch out for a man who drives a sleigh and plays with reindeer, let’s just hope this holiday’s a good one without any fear.

(Photo thanks to www.theweekender.com )

Monday, May 11, 2009

Zine Workshop Flyer

At Paper Kite Press in Kingston/Edwardsville.

Saturday, April 11, 2009

Remembering Snail Mail

Wendy from A Passion for Letter Writing and a handful of her readers have begun a correspondence with me based on Wendy's writing prompt called Let's Freak Someone Out!

I received 5 letters: Bonnie from Pittsburgh PA, Lisa from Flower Mound TX, Danielle from Rochester NY, Ilona from Newport RI, and Monica from Chicago IL. Each letter was more exciting than the last. Thank you for the amazing letters. I'll be getting back to you all soon.

In this throwaway world, do you even remember the last time you actually got something in the mail that was worth keeping? Something that wasn’t a bill? Something that wasn’t a pre-scripted card? When was the last time you actually scripted or received a letter? Not a business letter such as a cover letter for a job, but a hand-written cursive letter just discussing or contemplating the day’s events without fear of judgment?

For most of us, we might recall that we had a pen pal in elementary or middle school. I personally remember for over a year, I wrote to another girl my age that was living in England. While, I’d lost contact with her in my teens, especially after learning to drive, I still kept all of her letters in a box under my bed. Last fall during a cleaning spree, I pried open the box of memories and rediscovered them. As I read through each of the letters, I was flooded in memory. While her letters took almost a month to arrive, as soon as I mailed mine, I would check the mailbox excitedly for her response in the red white and blue international envelope with the words “Par Avion Air Mail” strewn across the front near my scribbled name. I recall once, after the lengthy correspondence, I received a phone call from her. We talked for approximately 2- 5 minutes and then her phone card ran out. It was one of the most exciting moments of my life. It was more wonderful than any of the other random memorabilia (blank concert wristbands, photographs of strangers, the dateless dried flower) that remained forgotten inside the box.

Over the last month, I have been reading “Love in the Time of Cholera.” The majority of the important correspondence appears in letter form between the two main characters. Suddenly, I had the striking realization that letter writing had become a lost art form. Since the only excitement in the post office box is a paycheck (as long as you don’t have direct deposit) and the hopes of a random postcard leave you feeling quite depressed since you aren’t the one on vacation, in an effort to regain enjoyment of opening the post box, I have begun corresponding. Now my words are inspired by the gentleman I write who lives in Kingston, a mere 15-minute drive from my home.

I began sending and receiving letters almost three months ago. This might be seen as ridiculous considering the more simple forms of communication: phone call, email, Facebook, MySpace, text messaging, and meeting in person. However, pre-generated text and email is easily disposed of, phone conversations are faceless communications, and I am convinced that the importance of words is lost to the ease of innovation and business side of communication. So while the “snail mail” pace of communication is a laughable amount of time considering the day or two it takes the postman to hand over my thoughts from days prior, there is just something about the magic of the letter that I keep close to my heart. It may be the swirls and swooshes that slow the mind when I make pen strokes that force me to consider spelling, word choice, and most importantly, a deep thought or two, because those things that are easily brushed over with spell checks, networking business letter structures, and the stiffly blocked fonts of computer programs. It may also just be the ever-so-rare excitement of receiving a letter.

No matter what the reason, this letter writing must continue. Receiving a handwritten letter is reliant upon a meager.43 cent stamp. And so, I am giving all writers a call to action. Hunter S. Thompson’s books did not take off until after the Fear and Loathing film. Many were published posthumously after carbon copies of every letter Thompson ever wrote were found, thus publishers discovered that the author had major talent beyond journalism. So this week, write one letter to someone and mail it from your local post office. Write a friend, pick a name out of the white pages (that’s the phonebook for you who use 555-1212 or 411 too often), or even write yourself a letter under a different name. Write the letter in your own handwriting and pour out your day, your heart, your soul, your hopes, your beliefs, and your dreams. Try writing more than one page and staying on topic.

*Published in The Weekender

Other interesting links:

Give your best wishes to Ilona's sister Esmerelda and future brother-in-law for their wedding:

Give this guy your address and he'll write you a letter: http://www.iblogbetterthanyourmom.com/2009/04/letter-writing-project-day-1.html

Tuesday, September 09, 2008

Leadoff hit for Bonazelli

“Despite the stopwatch efficiency that cast a pall of mechanical inevitability over the game, there was one moment of transformative emotion to be had, and everybody had it,” writes Andrew Bonazelli, managing editor of music mag Decibel, editor-in-chief of multiple in-store music magazines, including Monitor This in Gallery of Sound locations, and now, debut author of his first book, “Mechaniks.”

While the 162-page novella is based on a news story Bonazelli read a few years ago about Morgan Ensberg, then a third baseman for the Astros, and Bonazelli admits being a baseball (Mets) fan since he was 9, the reader can expect to strike out if they think that “Mechaniks” is only another typical baseball story. Rather than baseball being the focus, it is more the venue through which the real story begins. Bonazelli refers back to Ensberg’s story as inspiration: “Apparently, when he was in the minors, he and four of his roommates were held up at a hotel room. One of them disarmed the mugger. So, [Ensberg] had a pretty serious crippling life experience. I just remember reading about that and thinking, this is a good diving off point for something a bit more sinister between the players.”

Only the reader and teammates, Flynn Marlowe and Heath Hunter, share the truth of what happened as Bonazelli writes, “The fuzz very kindly bit the line Flynn Marlowe had cast — that two bums looking for cash and jewelry broke into the room during a poker game, and shot Mick and Ramon when they resisted. It was feasible enough.”

With terse and episodic influence of Flannery O’Connor’s Southern style and Dennis Cooper’s progressive storytelling, Bonazelli shows his reader pieces of photographs “in chapter form.” He writes, “Just before the boys took the field, Heath Hunter was visited in the bullpen by a man in obsidian sunglasses and a starch-hardened dress shirt. They shook hands, held a hard shoulder-to-fist embrace for 15 seconds and shared whispers. The whole while, Heath Hunter stared over the man’s back into the outfield like a pilgrim at the frontier. Nobody applauded or carried on at the sight of these two; the world simply sat on its hands and let two lost souls find one another. ‘Your signing bonus. Then you get the gun.’”

From this moment, Bonazelli allows the unfolding events to carry his reader ravenously to the next innings in his characters’ lives. Readers will struggle to put the book down and instead they’ll entertain just one more chapter, delving deeper into the “twisted and parasitic brotherhood” of Heath and Flynn. Bonazelli writes, “These were mechanics issues, small procedural irregularities that conspired to ruin everything. They could be fixed.” By the bottom of the ninth, Bonazelli has set the batting order down, loaded the bases with plot and sent his readers a grand slam story.

Check out: http://www.thedeciblog.com/?p=831 and http://digg.com/baseball/Review_of_Mechaniks_by_Andrew_Bonazelli/ who for comments about the book and a mention about my article!