After I mentioned my rapper name “B.S.C.” in a post not too long ago, my long time friend Rosa Fontana posted this status:
“It’s 2:43 a.m. Best time as any to realize a good nickname for me would be Semi-Colon. Not that anyone would use it, though. Two syllables too many, I guess.”
Now, whether or not this is related to my post, I don’t know. But I believe it might be, as around the time I was first called “B.S.C.” I also gave Rosa the rapper name “Lil’ Intestine.” But when I read that status, I laughed for…probably about a week. It was ingenious beyond belief, I mean that’s real wit. Chronic illness meets literary pun – I love it. Rosa is, easily, the funniest person I know. She’s like a modern Oscar Wilde, if Oscar Wilde wrote facebook statuses instead of plays. And I don’t say that lightly! And not to be all Hipster about this, but I’ve been a big fan of Rosa’s writing waaaay before she published her first book.
Rosa’s novel, The Directive, “gives a face and personality to a disorder that is often misunderstood. It exposes the world of Crohn’s disease and its prognosis, treatments, and concerns through humor, science, and the deep insights of its youthful characters.” Rosa was kind enough to take some time to talk about her book, her disease, and her journey through life and words with the semicolon in this exclusive interview with Do I Look Sick.
So, you’ve written and published a novel. How did all that come about? How did you decide to write about illness?
A bit of history: I’d been planning to go to the College of Santa Fe in New Mexico for creative writing, but after getting sick and being diagnosed with Crohn’s during senior year of high school, this plan was nixed and I had to hurriedly apply to anyone who would take me that wasn’t too far from my doctor. The University of Texas at Dallas accepted me on short notice.
Sophomore year, a colleague of my creative writing professor gave a seminar and afterwards, asked if anyone would be interested in forming a writer’s group. The literary studies group at UTD is small. I think something like half the students in the degree field showed up to the initial group meeting.
I had two folders sitting on my desktop during that first meeting, one of which contained the blueprints for what would become The Directive. And the professor’s colleague, none other than the extraordinarily gifted author and former PI, Robert J. Sadler, sat down with me and said, “Okay, show me what you’ve got.”
Talk about nerve-wracking! But the most solid piece I had to show him, which would come to be included in the book, I read it and he gave me this mustached smile and said, “Good. Very good.”
How could I not write about Crohn’s? To say I’ve had some crazy experiences is a glorious understatement. You can’t make this stuff up. And thus, it’s perfect writing material.
What is your goal for this book? What do you want it to accomplish?
From the outset, I wanted the primary goal of this book to be a form of outreach and advocacy. I wanted other people with forms of IBD to read it and go, “Finally! Someone else has an awkward colonoscopy story! And ooh, steroids, they were the worst.” It’s that underlying experience that unites all sufferers of the condition. I want them to know we’re not alone, that we have each other. Beyond that, I hope it gives insight to those whom we patients know as “normal people,” comprised of caretakers and innocent/ignorant bystanders. They’re on the outside looking in. Many of us don’t want to voice these experiences aloud even though we so desperately want people to understand our disease. This book does that for us.
How did you get it published and up for sale? Do you have any advice for writers looking to do the same?
I spent the first two years after writing the book looking for a literary agent. Failing that, I remembered that we do, in fact, live in the 21st century and publishing a book really is as simple as going down to a local printer, uploading, and clicking print. There’s a great publishing company out there called Lulu, and I worked with them to get the book into a published book. Do I wish I’d had an editor and a formatter? Of course. At the time, I just didn’t have the financial ability to invest in either, but it made me work that much harder to make sure the final product was as close to perfect as I could get. The experience was the most rewarding part of the process.
For anyone out there looking to publish, a literary agent really is a good idea. The experts weren’t kidding. They’re the liaison between you and the publisher, and they’re on hand for middle-of-the-night editing crises, (though I don’t recommend calling them in the middle of the night). It’s not so much scoring an agent that matters, but the effort that you will be required to put into it that will make you prove to yourself just how badly you want your story to be a real book. If you truly want your novel to see the light of day, you’ll find a way to do it.
How long did it take to write? What challenges did you face as you wrote? Did being sick or having “bad days” affect how/when you wrote?
Math was never my forte. Hang on, lemme count on my fingers…nine months. The book was my baby. Nine months start to finish.
I was in remission at this point. I’d been in and out of the university a lot in the past year because of Crohn’s-related issues. To be in remission and capable of sticking with a project, the timing was perfect. The biggest challenge, I suppose, was finding a good time to write, a time that I could stick to where my brain would still be functioning but not distracted by school or work. Did that stop me from composing scenes in the margins of my notes? No. But it also meant that about 80% of that book was composed between the hours of one and four in the morning.
As I said, being in remission during the time that this book was being in remission helped in ways I can only appreciate now, as someone experiencing the beginnings of a relapse but still writing. Being sick, without a doubt, impacts a person’s writing. If there isn’t a medication giving you brain fog and making you forget half the stuff you planned to write, there’s the fact that you’re clinging to a toilet for dear life and picking up a pen and paper is the last thing on your mind. It boils down to the moments in between, when things are quiet. The pressure is on to squeeze as many meaningful words onto paper in those rare moments as possible.
Do you plan to publish more books? If so, what do you want to write about?
Oh, definitely. Writing seems to be about the only thing I know how to do from start to finish, so I’m sticking to it! I currently have another project on the drawing board. Without giving too much away, I have found that writing about medical things is quite fun. I know there are about two dozen medical shows on TV right now, and you’d think they’d run out of stories, that a guy can only break his leg in so many ways, but the truth is, the possibilities are endless. Every person’s experience is different. The great thing about medicine + fiction means my crazy imagination can create some pretty wild things as long as everything makes sense on the page.
I will add, I love the heady topics, the storylines about life and death and all the questions we don’t have answers for. It leaves room for imagination and by extension, good stories.
Do you have any advice for writers in general on the process?
A little secret: Never stop writing.
Why do you write?
I was your quintessential nerd in school. Writing is my haven, my Iron Man suit, my quiet revenge, my no-judgments zone, my cone of silence. It allows me to be everything. There is so much freedom in it and it’s where I’m the most honest. Crohn’s has taught me that to make the most of my time; writing has helped me spend it wisely.
You graduated from college not too long ago. How did being ill affect your academic life? How did you balance illness, school, and work?
I distinctly remember my first college math class during freshman year. In the middle of an aggressive flare, I felt and looked like death. While the professor doodled equations on the board, I was in my seat waging a fierce internal battle: should I just leave? I’m gonna be sick. No, I should stay, it’s only day one. I need to be strong. If this is what college is going to be like, I’d sooner be dead. It was the lowest point in my life, initially. Then someone mentioned the disabilities office that was on campus. I went to see them and suddenly, the whole college experience was turned around. It’s okay to ask for help. It’s okay to tell your professors, “Hey, here’s a letter from my doc. Be forewarned, I’m gonna be sick.” And if they give you any crap, just remind them of the legal ramifications. Happily, for me, it never came to that. It became a lesson on balance. I found that health seems to put itself first and then dabble in every area of life. I worked with it instead of against it.
What was your major? Why did you choose it?
Thanks to an awesome college advisor, I wound up receiving two majors: literary studies and historical studies. (Don’t laugh, that’s UTD for you. Just round up and call ‘em lit and history.) I started off with literary studies because it was the closest I could get to creative writing without paying $28k a year at a private arts college. Writing fiction is easy. Writing good fiction, for me, started with being able to write good non-fiction: literary essays. By creating verbally blown up diagrams of any particular novel or poem, it allowed me to understand not just what makes a story enjoyable to read, but also how a story ticks, how it moves and affects the reader. The historical studies degree was just a happy accident.
What does a “bad day” look like for you? And how do you deal with it?
It depends on whether I’m in remission or a flare. A bad remission day is usually days-long fatigue that won’t be fixed by any amount of sleep. My appetite may be nonexistent, or I might be ravenous and consume everything in sight, maybe even store some for later like the squirrels in the front lawn. I spend most of the day in the bathroom. If I had a secretary, I’d ask them to hold my calls.
If I’m in a flare, however, it’s the last circle of hell, which even then hath no fury like this woman, who has so obviously been scorned. Everything I ingest goes flying through me. My guts absorb zero nutrients. Any water intake is used for projectile action. I spend all of my time in the bathroom. I lose blood via my guts. And then my doctor prescribes a drug that might’ve only just been approved by the FDA a month ago in the hopes that it’ll do something.
What’s your favorite comfort when you’re sick or just feeling down?
Tea. Always. Forever. The world could be ending; I don’t care, just as long as I have a decent cup of tea.
Other than writing, what do you like to do?
Let’s just say I liked archery long before Katniss made it cool. Other than that, I’ve always loved to draw. It helps to be able to visualize my stories, sometimes.
What are your plans for your future?
I think a lot of invisible illness sufferers, or really anyone with any sort of illness, understands me when I say I’m just planning to get through the next five minutes. For me, it’s the next five minutes plus a second book. Grad school sounds like an adventure. A boyfriend sounds nice, too.
We grew up in church together – how has your faith affected your view/experience of being sick?
It’s amazing how much one affects the other and vice versa. If anything, my entire worldview has evolved in the time since my diagnosis. I think Crohn’s disease has been the greatest blessing, and it takes a big part of me to say that. Has it made my life crappy? At times. But you know what, I’ve got a ridiculous pain threshold now, plus a book-worthy experience out of it. I don’t blame anyone or anything for it. It is what it is.
What do you feel is your greatest accomplishment?
Up until now, that book is the one thing that I feel has deserved and received every bit of my focus and energy and time. And it makes me so proud. If I died tomorrow, I wouldn’t regret anything, because of that book. I hope it reaches the hearts and minds of people like me and people utterly different from me.
Obviously, you don’t look sick. How DO you look? How do others see you, and how do you see yourself?
In the words of Fred Weasley, “A scrawny, specky git.” Ah, I don’t know. I’m sure I look a little on the malnourished side and my pants have a hard time staying up without a belt. I’m pretty average, and it’s probably why people don’t automatically assume I have a disease. After they find out though, I like to think that, in confidently explaining to them what Crohn’s is, they see me as someone enjoying everything she can in life. And that’s exactly what I do.