I’m thrilled to welcome author Miranda Hill to Blog of Green Gables, continuing the series I started some time ago about when writers read kids’ books. Miranda’s collection of short stories, Sleeping Funny, is due out next week from Doubleday. Here, Miranda writes about reading through a lengthy illness with her daughter Bea. “Books had to be carefully selected, because certain dramatic episodes or oppressive situations might trigger an attack of anxiety, but stories that weren’t engaging enough would not pierce through the pain.” Thank you Miranda for sharing such a personal and powerful story.
This is a sad story. But I can tell you that it will be all right in the end.
Of course, we didn’t know that at the time.
In the wee hours of January 1, 2011, my eleven year-old daughter woke in the night, screaming with stomach pains. It was a spike up through all of our worlds. Our hospital visit that night was the first of many. Tests—blood, urine, psychological—followed. She would experience intense 3-4 hour episodes of pain that she rated on a 10 out of 10 scale. Worse, she developed chronic pain that never left her, even for a moment. That pain, and the related illness, would sculpt our lives for the next nine months.
Before that night, Bea had been the most cheerful of children. The fifth of a blended family of five kids. The only one not yet a teenager. Smart, kind, funny, buoyantly well-adjusted. She became exhausted, fearful, anxious, listless, depressed. Already a thin child, she lost weight, turned pale as her sheets, began to refuse to see more than one person a time, wept every night from dusk on, became terrified to fall asleep, spent 24 hours a day in bed and frequently had to be carried to the bathroom. It felt as if we were in some fairytale, where one child had been lifted from the bed in the night, and another child put in her place.
All that time, I was trying to finish my first book, a collection of stories called Sleeping Funny. Though the collection is not linked, or bound by any theme, there were definitely recurring tropes—among them, that of children’s stories, and the adults who read them to their kids, and why.
I have always identified myself as a reader first. It is the way I hide from the world, and the way I participate in it. When I have had painful episodes, even in labour with Bea, I have read. And so, while Bea slipped into her own pain, I read to her, too.
Books had to be carefully selected, because certain dramatic episodes or oppressive situations might trigger an attack of anxiety, but stories that weren’t engaging enough would not pierce through the pain. We reread books that had delighted her when she was younger, like Bashful Bob and Doleful Dorinda by Margaret Atwood and Dr. Seuss’s posthumous collaboration Hooray for Diffendoofer Day, stories that were rhythmic ad filled with the comfort of expectation for the next line and the memory of earlier, easier times. We reread books she had read on her own, like the all-time favourite The Tale of Despereaux by Kate diCamillo, a book even more beautiful read aloud and in company, than savoured silently and alone. We discovered stories that were new to us, the hilarious The Incorrigible Children of Ashton Place series and The Little Prince—which I had always meant to read.
The hours that we spent reading were the only thing either of us would want to remember from that sad and frightening time. They distracted us, in whatever little way they could, from the fear and frustration, the alienation that an illness, so all-encompassing, but so seemingly inexplicable, can produce. Because, despite the constant tests, there were no answers. There was a growing list of things she didn’t have (thank God), but no true diagnosis—and no cures.
How could this happen, we wondered? Neighbours wondered. Friends wondered. Doctors wondered, too. And then, some doctors seemed to suggest that it wasn’t happening at all. That maybe all of this was some sort of subconscious ruse Bea was concocting to keep herself out of school and home with mum.
Luckily, we were bolstered by friends in the health profession who continued and to work on the mystery, to try to help. And we also encountered a children’s GI specialist.
“Don’t let anyone tell you this pain isn’t real,” he said. And then he gave us his assessment: her condition had been brought on by a flu she’d recovered from weeks before her first attack of pain. It was nothing we were going to see on a test, he told us, nothing we could “prove” to anyone. And then he proscribed the only things he thought might work: pancreatic enzymes and time. It was going to take months and months for it to go away, he said, if it ever did.
It wasn’t what we wanted to hear. We wanted help. We wanted a definite cure. Mystery illnesses without tangible diagnoses seemed part of another century. We lived in a quantifiable age, a predictable—or at least explicable—time. We didn’t want to believe him. But as the weeks, then months, went by, we had to. There was nothing she could take or do that would suddenly make it all better. But she did have to get better.
“What if this is the rest of my life?” Bea asked. “What if I can’t get back to it? What if I can’t find my old self again?”
“I am not going to let that happen,” I told her. I had the determination, but absolutely no plan.
And then we were faced with a terrible truth: the sicker Bea had become, the sicker she was committed to be. Lying in bed for weeks, then months, her muscles had weakened. The time indoors, in winter, had made her ultra sensitive to light and to noises. Fears and psychological troubles, though not the cause of the illness, had been its virulent byproduct, fed by isolation, drug side effects, and exhaustion from the pain itself.
My husband and I made a difficult choice: if pain was going to be Bea’s life, she still needed to have a life. She had to get up. She had to get back to the world. Even if it hurt terribly to do so.
We set a date. We told Bea that she would return to school on a part-time basis for the third term. A class here, a class there, worked around doctor’s appointments, counseling appointments, and rest.
Bea was horrified. She saw our decision as a complete betrayal. Did it mean that we, too, doubted her pain? That we had been turned? There were additional tears, there were deeper, longer silences. Only now, the tears and silences were directed at me. I had been her ally, and I had forsaken her. The only time we didn’t argue or smoulder with sadness, was when we read.
In the last days before she went to back to school, I was searching Bea’s shelf for a new book to read. Like Bea, I saw something slipping away, a trust between us, that pocket of comfort that we had been able to find together, when everything else seemed hostile or hopeless. And in the last few days alone together, I wanted to provide things that I had always meant to give her, treasured parts of some classic childhood that perhaps no child ever has. That’s when I found The Secret Garden.
It had been sitting on her shelf for years, in several editions—a large, beautifully illustrated hardcover, a couple of abridged versions given as not-well-thought-out presents by people who had underestimated Bea’s reading ability, and my old copy from childhood. But she had never read it, with me or alone.
I doubted my choice almost as soon as we began to read. This was hardly a comforting tale to round out our months of 24-hour togetherness. I had forgotten the horrible scene (astoundingly well-realized) of Mary being forgotten, left behind as her British parents and the whole household of Indian servants dies of cholera. Then there was the racism (always to be navigated in these classics, but so quickly noted by Bea that it need not be explained by me) and the blatant disregard for the orphaned Mary, when she arrives at her new, Yorkshire home. What had I been thinking?
And then we came to Colin: the boy invalid who shuts himself away, convinced by doctors and by himself that he will die. He is sad and angry, unable to walk far without a wheelchair. His ailments are legion, and pretty much unexplained.
In my earlier reads of the book, I had loved the story of the garden, its magic and its secrets, giving little thought to Colin and his story. I had dismissed his condition as a typical, old-fashioned misdiagnosis or a dramatic feint, something that was the province of dusty manor houses and charlatan doctors, afraid to open a window lest something come in on the draft. But lying there beside my own, sudden-invalid child, I read the story differently. I added my own, raw experience to Frances Hodgson Burnett’s compassion and insight, and found something timeless. It wasn’t just the intensity or the name of the disease that made it dangerous, it was how illness could trap a person inside it, so that it seemed impossible to escape.
Tucked in beside me, Bea had had her own epiphany. “I know how Colin feels,” Bea said. Her voice was quiet, but purposeful. “The longer you are sick, the less you want to get well.”
I will not tell you that Bea jumped out of bed and ran around the house. She did not shrug off the illness, anxiety and depression immediately. She couldn’t. There was still too far to go. But, from that moment, it seemed as if she and I had reached a new understanding between us. Maybe we both were able to go from wishing that things would change, to believing that they could. Because as Colin got better, Bea started to, as well.
And in much the same way. Inside, we chased the light around the house, finding the brighter corners. Bea began taking charge of decisions about her health, opting for facing down pain. When the last round of pharmaceuticals produced more negative psychological side effects, she noticed instantly and refused to take more. She worked to develop techniques for falling asleep on her own. She went from crying when forced to go outside and down the street to walking around the block, hesitantly at first, and then with purpose. On one difficult day, a small walk turned into an excursion of many metres, in which we circled around and around under the cherry trees in our neighbourhood park, staying out, at Bea’s insistence, just a little bit longer. “It’s so beautiful,” Bea said. “You don’t want to look, but it’s so beautiful that you have to.”
Bea is 13 now. She has gained back the weight she lost, and then some. She has grown a couple of inches. She goes out of the house to school and sleepovers and camp and hardly ever pauses to ask, nervously, if I will be there when she gets back.
I rarely read to her anymore, but often she will seek me out in the kitchen or myoffice to read to me a particularly good line she’s found in one of the books she is reading on her own. When I was doing a final rewrite on one of my stories for my book, I read it aloud to her, and took her edits. She is a girl who has come to believe in light, natural beauty and time for quiet and reflection. She has grown even more sympathetic and empathetic. And I think she will always believe in the power of a good story. As I do. Now, more than ever.
Miranda Hill’s debut story collection, Sleeping Funny, comes out September 18 from Doubleday Canada. Her stories have previously appeared in Reader’s Digest, The New Quarterly and The Dalhousie Review, and in 2011 she won The Writers’ Trust / McClelland and Stewart Journey Prize for her short story, “Petitions to Saint Chronic.”
Hill is also the founder and executive director of the Canadian charity Project Bookmark Canada. She lives, writes and works in Hamilton, Ontario.