GUTS, IBD

Freaky Friday

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Today is Friday the 13th, a day that can cause worry among superstitious people. I’m kind of superstitious, and plenty of things cause me anxiety, but not this. My birthday is on April 13th, and I turned 13 on Friday the 13th, so I’ve always liked the number. Friday the 13ths have always felt special to me. Lucky.

Except for that one time, seventeen years ago.

March 13, 1998 was also a Friday. I know this because I looked it up recently while doing research for my memoir, GUTS. In March of 1998 I was 26 years old and 5 months into treatment for Crohn’s Disease. I’d had a flare-up, a common complication of Crohn’s. On Friday the 13th I had a CT scan and went home to await the results. My 3rd bite of dinner, my first food all day, was on its way to my mouth when the phone rang.

“You have an abscess,” my doctor said, breathless, like she’d read the radiology report and run up a flight of stairs to call me. I thought I detected a note of excitement in her voice: Finally my mild, hard-to-treat Crohn’s Disease was asserting itself in some identifiable way.

“You need to go to the hospital. Immediately.”

So Wiley and I went to the Emergency Room. They brought me to a curtained-off area and told me to put on a hospital gown. After 3 failed attempts to find a good vein in my arm, the nurse inserted a port into the back of my hand where an IV would be placed when I went upstairs for surgery. If I went upstairs. We waited and waited. In order to stay warm, I’d put my jeans back on underneath my hospital gown like a three-year-old who wanted to wear pants and a twirly dress to school.

Two hours after we arrived, the surgical resident stood in the curtained-off area, peering at my CT scan on the film reader.

“I guess that’s an abscess,” he said. He was handsome: short, early thirties, with a shaved head and frameless glasses. He turned to me, taking in my gown-and-jeans ensemble, my arms crossed for warmth.

“You look too good to be here.” It sounded like a pick-up line, and I blushed. But it wasn’t flattery, it was doctor-speak. He meant: I’m not much older than you, but I’ve been through 4 years of medical school, and 6 years of residency, and now I’m the Chief Surgical Resident of a busy urban hospital and in my experience when someone needs surgery they look like they need it, if you know what I mean. You are too far from death’s door. You don’t even have a fever, for Pete’s sake.

It turned out that he was right to be skeptical. The Crohn’s was a misdiagnosis. The abscess wasn’t an abscess. It was a rare, benign tumor called a teratoma. It would take a new set of doctors to figure this out. A year and half after that ER visit, I’d have surgery to remove the teratoma, then another when it came back 5 years later. Now I’m one of over a million Americans with an ostomy (a gut-related and GUTS-related fact I also recently looked up).

This Friday the 13th of March, I have different plans for the evening. Wiley and I are hosting a table at “People Eating and Giving,” the annual fundraiser for the Bureau of Fearless Ideas, a writing center for kids. I recently joined the BFI board, and I am excited to be at the event in that role for the first time. The evening will mark another first: I’ll be wearing a dress for the first time since my colostomy surgery. As you can imagine, clothes shopping with a colostomy can be tricky (as I describe in this essay), and dresses particularly challenging to wear. Thanks to a recent purchase of a magical concealing undergarment, though, I can wear a dress without anyone noticing a plastic disk protruding from my mid-section. I never thought of putting on a dress as an act of triumph, but I bet that’s how I’ll feel.  Triumphant.  Liberated.  Maybe even fearless.

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Some BFI regulars, being fearless

Writing

B in the World

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I am pleased to host my blog’s first-ever guest, children’s author Sharon Mentyka. It feels entirely fitting to have Sharon as my first guest. In addition to being a terrific children’s author, she is a designer at Partners in Design, and put together my website (looks fab, no?). I really admire Sharon’s recently published children’s chapter book, “B in the World.”

b_cover_website

Here is the book’s description:

B and his friends Rudy and Grace are super excited to be starting second grade. But when they find out that Ms. Hitchings will be their new teacher, everything changes. Then, to make things worse, Mia, the meanest, bossiest girl that New Horizons School has ever known, arrives. When B and Mia both decide they want to try out for the leading part in the spring play, B wonders how he’ll ever survive the year.

A chapter book for children ages 5 and up and the people who love them, “B in the World” takes an open-hearted, kids-eyed view of what it means to be “different” and celebrates children for who they are meant to be, not how others want to label them.

I’ve read it to my 7-year-old son, shared it with our school librarian, and now I want to share it with you!  Below, Sharon answers my questions about this powerful and important story:

  1. Why did you decide to write this story?

It was kind of a happy convergence of a number of different things. I had been wanting to write a story for early elementary students when a classmate in my MFA program at the Northwest Institute of Literary Arts mentioned that the son of a friend was going through a lot of pain being bullied at school because he didn’t dress or behave like most of the other boys. I realized that hiding who we really are from others at a young age can only lead to pain and grief later in life—not only for ourselves but for those who love us. The whole idea clicked when I remembered how one of my daughter’s teachers (who became the model for Mr. J in the book) taught his students empathy for each other in those early years when friends can help or hurt us so much.

  1. How long did it take to write it?

Quite a few years, actually! The idea for B was born in 2009 but I knew I needed to do a lot of research first—reading about child development and talking to parents and teachers. And I needed to decide how openly I was going to be presenting B’s gender fluid nature because I knew I would be tackling a sensitive topic. That meant more connecting and talking to folks in the gender diversity community to be sure I was representing concepts accurately. And even though the book’s message of empathy and acceptance needed to appeal to parents, it couldn’t be preachy. The story needed to be an entertaining one for kids. And that took time.

  1. What do you hope readers come away with the book thinking about or talking about?

Many children, especially once they start school, struggle with being somehow perceived as “different”—either because of how they like to dress, or how they look, or simply because of what they like to do. Some of the challenges B faces in this story are gender-connected; some are just kid-related. I would love it if the book can open up conversations about situations like these. Why do we sometimes fear differences? What does it mean to be true to yourself and why you should be proud of it? Why is our first reaction to sometimes to laugh at someone else when we feel nervous? Talking about these kinds of feelings and situations can really help children—and adults—grow more empathy.

  1. Are there other books (for children or adults) written on this topic?

There are quite a few good picture books out there, which I think feel safer to some folks. My Princess Boy by Cheryl Kilodavis and Roland Humphrey is Wearing a WHAT? by Eileen Kiernan-Johnson come to mind. Then the topic picks up again in middle-grade and YA books where gender fluidity becomes more common. And for adults, there might not be anything better than the books and essays by Jennifer Finney Boylan (www.jenniferboylan.net)

But I identified a real gap in the early elementary years, where fitting in and bullying can be critical issues. That’s one of the reasons I decided to write B’s story as a chapter book—those years span a critical time period when parents read to their children and then the children pick up those same books when they begin to read themselves. So there can be a lot of impact there. I have a fiction and nonfiction reading list that folks can download from the Resources section of B’s website if they’re interested.

  1. Where can people (parents and kids) go for more information or support around issues of bullying and/or gender fluidity?

There are so many good resources out there. Gender Spectrum (www.genderspectrum.org) and Gender Diversity (www.genderdiversity.org) are both great, comprehensive support sites that offer a lot of information for families with young children who are exploring gender roles. For teaching empathy and acceptance, Welcoming Schools, which is a program run by the Human Rights Campaign Foundation (www.welcomingschools.org) is where I would send folks. They have some wonderful resources on how to be sensitive and also offer simple answers parents can give to young children’s questions about gender.

  1. Why did you decide to self-publish?

That decision really came about because I ran into a few dead-ends going the traditional publishing route. Children’s chapter books follow a bit of a formula and diverging from that model is difficult if you’re not an established author. But I knew from my research there was an audience out there for a book like this, I just knew it, so I decided to tap into that energy. And it’s been a great learning experience as well as very rewarding for me. I’ve received nothing but supportive emails from parents and librarians all over the county, telling me how much a book like this is needed.

  1. In your acknowledgements you mention 2nd graders as beta-readers. Great idea! Any feedback they gave you that was especially helpful?

The kids are really a reality check for me. For B, I read early drafts to several groups of second- and third-graders at a Seattle elementary school and also at a tutoring center where I volunteer. Kids this age have no problem telling you whether they like or dislike characters, or if situations in the story ring true. Are the characters like kids they might know or want to know? Does the language and voice feel right? When I finish reading a chapter, if the kids ask me to read more, then I know I’m on the right track.

  1. What is your next project?

I have two stories currently in progress: one is a graphic novel that centers around a boy who uses art to heal a crisis in his family, and the other is a early middle grade historical novel set in the Pennsylvania coal mines of the 1940s. I’m also looking for a home for two completed middle-grade novels.

  1. Anything else you want to tell us?

Gender identity may feel like the next frontier, but it really is a chance for all of us to practice empathy and acceptance. Given all the global, environmental and political challenges our children will likely be facing, it may be one of the few things where parents can truly make a difference by giving their children the skills and mindset to be who they were truly meant to be, and to know that those choices will be okay.

Thank you, Sharon, for sharing your thoughts about “B in the World.”

This Friday, March 13th is the book launch party for “B in the World” at Secret Garden Books in Seattle.  If you live in the area I encourage you to attend and bring your favorite kiddos!  And everyone, here is information about where you can get a copy of “B in the World.”