May is Cystic Fibrosis Awareness Month. I didn’t know much about cystic fibrosis until I met Bill Fiscaletti, many years ago. He attended the same high school as my husband. The two were introduced through their art teacher and became friends. When I came on the scene a few years later, Bill was a pretty brilliant painter and actively involved with community theater. We’d come to his plays and meet afterward for dinner. When he talked about CF it was mainly to rage about medical funding and why AIDS got all the research money when there were more kids dying from CF. Otherwise, he treated it as a fact of his life. Sometimes he had to go for treatments, sometimes he got sick, and my husband visited him in the hospital. Sure, he coughed, but after a while you just got used to it, waited until he was done, and continued the conversation. Bill was just Bill, not a guy with a disease.
Yet without having known Bill, I might have never written Drawing Breath. Heck, he’s one of the reasons I keep writing fiction. He was one of my heroes, although I never told him. If I had, he probably would have laughed and changed the subject. He believed in doing art, not talking about art, and he didn’t consider himself a hero. Despite having cystic fibrosis and being in pretty rough shape at times, he just went about his business, did his breathing therapy, took his medication, and poured his passion into the activities and people he loved, even though he was already way past his “expiration date.”
We silly humans can put blinders on when looking at people with horrible chronic diseases. As if they’re saints or something. Bill was flawed, like all of us. Human, like all of us. He could have a temper, especially when he sensed he was being humored or pitied. He blew deadlines. He spaced on details, which led to sometimes sad and sometimes comical results. For reasons I could never fathom even though he explained it to me (patiently) dozens of times, he was a big fan of professional boxing and especially Muhammad Ali. But he could also be sweet and thoughtful and kind, often when you least expected it. He never had a real girlfriend, and that made me horribly sad, because he had so much to give and was so infinitely lovable. Maybe that’s also one of the reasons I wrote this book. But muses work in funny ways. As the character of Daniel became less Bill and more Daniel, the love I wanted to give him became more complicated, more demanding, more human.
Drawing Breath is dedicated to Bill, although he’d probably tell me to stop talking about him and get back to work. So I do. I put my head down and write another novel, and another, and another.