Not long ago, I became frustrated with my inability to find fiction whose main character has a chronic illness or chronic condition. It seems there’s no lack of fiction about characters with terminal illnesses, but very little where the character has a chronic illness.
Being afflicted with a chronic illness myself (chronic migraine) and being a writer as well, I can see why chronic illnesses aren’t generally appealing to write about. They don’t have a natural story arc. With a terminal illness, the story proceeds towards an inevitable conclusion, which is a necessary element of good fiction, or so I have been told in writing workshops. Personally, I think this is hogwash, but let’s assume for a moment that most people agree. A chronic illness, then, is the last thing you want in a novel. A chronic illness does not proceed, building in intensity, toward an Inevitable Conclusion. Instead, it limps along quietly while the protagonist often leads a more or less ordinary life. A chronic condition usually goes through cycles of exacerbation and remission. Instead of providing good plot structure— Point A to Point B to Point C to Conclusion!— it drags on and on until the person living with it, along with everyone else in their life, grows weary of it. Presumably a reader would get weary of it, too. This is what I sadly concluded when I couldn’t find books with characters like me.
I posted a plea on Facebook for any fiction recommendations— young reader or adult— where a main character had a chronic illness. Even my librarian friends were stumped. I tried to remember if I’d ever read anything that could fit, and came up with two books out of the thousands I’ve read over the years.
The Door in the Wall by Marguerite De Angeli, a classic children’s book set in medieval times, begins with Robin, the young protagonist, suffering from a mysterious fever that leaves him crippled. Robin is taken in by a monastery, where kindly monks teach him new skills like whittling, help him swim in streams to strengthen his muscles, and make him a pair of crutches so he can get around independently. I love it that Robin doesn’t recover completely, but instead, learns to adjust to his new level of ability. Meanwhile, he grows from a spoiled brat into a worthy young man— and he gets to be a hero, too.
On the adult side, a couple of years ago I read The Care and Handling of Roses with Thorns by Margaret Dilloway. Gal, the protagonist, is a science teacher and rose grower with a congenital kidney defect that has led to kidney failure. She undergoes dialysis regularly as she waits…and waits…and waits for a transplant. Like many chronically ill people, Gal is determined to ask for no quarter. She’s as hard on her high school students as she is on herself. At the beginning of the story, I didn’t like Gal much at all. As the book progresses and Gal’s teenaged niece comes to live with her, Gal makes strides toward blooming like one of her own roses— though, realistically, she keeps her thorns. This book resonated with me because it blew apart the “your hard times make you a better person!” meme. Gal’s illness and her long time on the transplant wait list have made her a lonely, bitter perfectionist with little compassion for others. Other factors conspire to make her a better person in this story.
For some time, these two books were the only ones I’d read with chronically ill characters. I had to assume that most writers don’t want to touch this topic with a ten-foot pole. Then recently, two incredible books fell into my lap by pure chance, making me hopeful that maybe this, like so many taboo topics, is going to become more mainstream in fiction. These two books appeared (magically!) in the mail as Advance Reader Copies shipped to our bookstore.
Say What You Will by Cammie McGovern is the story of a friendship between Amy, a girl with cerebral palsy who uses a wheelchair to get around and a voice-generating device to talk, and Matthew, a boy with OCD who signs up for a job as one of her student aides. The novel brilliantly shows how some conditions are highly visible and others are invisible. Beautifully and with humor, it gently unfolds a lovely but sometimes painful friendship story that dances on the edges of romance.
Right after this, I found and fell in love with Fleabrain Loves Franny by Joanne Rocklin, a middle reader novel set in 1952-53 (on sale August 26). Franny is an 11-year-old girl recovering from polio. Lonely and confined to her house, ostracized by the neighborhood kids who think she’s still contagious, Franny makes friends with a flea who lives on her dog. Fleabrain can talk and write, and even develops superpowers that help Franny escape her confinement and have adventures. I absolutely adore this book because it speaks so candidly about so much I’ve experienced. Franny divides her life into Before, when she could do everything her friends can do, and Now. She is not a “bucker-upper” about her condition. She’s sad and angry about it, and she jokes with her sister about how she’d make a “rotten poster child” for the March of Dimes. She gets frustrated with her physical therapy. She wonders why she got polio and her friends didn’t— what she did “wrong.” All Franny’s feelings mirror my own, although our conditions are very different. But Franny’s story is an upper, not a downer. While not glossing over the realities of illness, it also comes from a deeply joyful place. Fleabrain and some other very important characters help Franny to regain her ability to be happy, to learn new ways of having fun, and even to discover some important Truths of the Universe.
My own Truth of the Universe, or TOTU, as Fleabrain puts it, distilled from living with a chronic illness is a truth I found in all these stories. The truth as I see it, and as these books bravely present it, is not that sick people can live a good life “despite” our afflictions. It’s that we can learn to live a good and beautiful life within our afflictions or conditions. It isn’t possible to separate ourselves from them, put them in a box, and keep living a normal life, just with a box to haul around. Instead, all the strands of our lives are woven together, and amidst and within pain, inconvenience, and limitations, we also have love, joy, beauty, and adventure. Although we may not do things that are obviously exciting or heroic, for it may take a lot of doing just to get through an ordinary day, we, too, are the heroes of our own stories—not by being “bucker-uppers” or poster children, but by being true, complex human beings.
Amanda MacNaughton is a bookseller at Paulina Springs Books in Sisters and Redmond, Oregon. She has been working there for eight years, and developed chronic migraine a couple of years ago. She doesn’t yet know all the TOTUs she’ll find from this experience, but she’s ever so grateful for the flexible work environment that makes it possible to keep her job, and for the brave writers who make stories out of something so difficult.