the inspiration for
“Two Girls Staring At The Ceiling”
For years, I didn’t tell anyone I had Crohn's Disease. Having anything at all wrong with me felt bad enough, but having a “below-the-belt disease?” Also known as Inflammatory Bowel Disease? Like my character Chess,
“If it were up to me
I wouldn't even
have
bowels.
Never mind
a disease
with bowel
its middle name.”
Like so many people with Crohn’s, mine started in my teens. Maybe no one told me it was a lifelong, chronic condition, maybe they said it and I couldn’t hear, but once I’d gotten through the surgeries the summer after sophomore year of college, I truly believed I’d be fine. Whatever troubles I was having, I chalked up to stress. If I just worked harder, avoided doctors, told no one, I could deny it into submission. That was the plan. And unlike many people with this illness, I got lucky. I made it through college, married, had a son, worked, wrote my books, and had many, many years of doing a reasonable impersonation of a relatively not-sick person before the Crohn's caught up with me again. I spent much of the summer of 2002 in the hospital. And since then, there’ve been tough stretches. But through it all, I have a full, happy, incredibly blessed life.
I didn’t set out to write a novel in verse. Or anything concerning Crohn's disease. I started writing the story that became the poems that turned into this book because of an inspiredly foul-mouthed, ferociously brave, hilarious, and deeply kind woman I shared a room with during one of my hospital stays. “You know what your @#$% problem is?” she told me. “You’re too @##$% nice!” Through two endless, scary nights, we pissed and moaned and ranted and laughed and told each other our life stories. I’d like to think I cheered and helped her as much as she helped me. We emailed back and forth for years. Her motto, “We don’t take stress, we give stress” stayed in my head even after our friendship faded away. I hope I’ve done justice to her spirit and pray she’s still giving stress today.
TWO GIRLS was the hardest book I’ve written. Not because it was in verse. The poems gave me the freedom to jump from present to past, and between the real world and dreams. What made it such hard going was how uncomfortable, vulnerable, and exposed writing about being sick made me – and still makes me – feel. What kept me writing were the questions I’m still trying to figure out: How do you trust that people will see you for who you are inside, when you can’t trust your body not to betray or embarrass or shame you? How can you live your life when you’re never sure how you’ll feel? What do you do with the anger and discouragement? How do you ask for help when you need it, and still hang onto your pride? How do you keep on laughing? How can you remember, when things feel really bad, that it won’t stay that way, and that life will be happy again?
None of these challenges are unique to Crohn's disease, or even to people with chronic illnesses or disabilities. To one extent or another, everyone, young or old, faces these same things. Which is why I hope everyone who reads TWO GIRLS STARING AT THE CEILING will see something of herself or himself or someone she knows in Chess and Shannon and the people in their lives.
“If it were up to me
I wouldn't even
have
bowels.
Never mind
a disease
with bowel
its middle name.”
Like so many people with Crohn’s, mine started in my teens. Maybe no one told me it was a lifelong, chronic condition, maybe they said it and I couldn’t hear, but once I’d gotten through the surgeries the summer after sophomore year of college, I truly believed I’d be fine. Whatever troubles I was having, I chalked up to stress. If I just worked harder, avoided doctors, told no one, I could deny it into submission. That was the plan. And unlike many people with this illness, I got lucky. I made it through college, married, had a son, worked, wrote my books, and had many, many years of doing a reasonable impersonation of a relatively not-sick person before the Crohn's caught up with me again. I spent much of the summer of 2002 in the hospital. And since then, there’ve been tough stretches. But through it all, I have a full, happy, incredibly blessed life.
I didn’t set out to write a novel in verse. Or anything concerning Crohn's disease. I started writing the story that became the poems that turned into this book because of an inspiredly foul-mouthed, ferociously brave, hilarious, and deeply kind woman I shared a room with during one of my hospital stays. “You know what your @#$% problem is?” she told me. “You’re too @##$% nice!” Through two endless, scary nights, we pissed and moaned and ranted and laughed and told each other our life stories. I’d like to think I cheered and helped her as much as she helped me. We emailed back and forth for years. Her motto, “We don’t take stress, we give stress” stayed in my head even after our friendship faded away. I hope I’ve done justice to her spirit and pray she’s still giving stress today.
TWO GIRLS was the hardest book I’ve written. Not because it was in verse. The poems gave me the freedom to jump from present to past, and between the real world and dreams. What made it such hard going was how uncomfortable, vulnerable, and exposed writing about being sick made me – and still makes me – feel. What kept me writing were the questions I’m still trying to figure out: How do you trust that people will see you for who you are inside, when you can’t trust your body not to betray or embarrass or shame you? How can you live your life when you’re never sure how you’ll feel? What do you do with the anger and discouragement? How do you ask for help when you need it, and still hang onto your pride? How do you keep on laughing? How can you remember, when things feel really bad, that it won’t stay that way, and that life will be happy again?
None of these challenges are unique to Crohn's disease, or even to people with chronic illnesses or disabilities. To one extent or another, everyone, young or old, faces these same things. Which is why I hope everyone who reads TWO GIRLS STARING AT THE CEILING will see something of herself or himself or someone she knows in Chess and Shannon and the people in their lives.