I sometimes hear the phrase “autism is a blessing” – I’ve seen books with this title – but it wasn’t for me. As a young child, growing up with my brother who had low-functioning autism, I clung to the idea that somehow this was part of a grand plan, that my family’s struggle was happening for a reason, a vague and undefined reason to be sure, but a reason all the same. The trouble was, I knew there was another story that wasn’t being told. I didn’t hear anyone talking about the interior turmoil of a family going through this profound upheaval. Or about how it was to be a sibling, with all of the mixed and tangled emotions of love, frustration, and sorrow. Since no one spoke of this, I often felt baffled and alone.
In my memoir, Hazard: A Sister’s Flight from Family and a Broken Boy, I tell a story that penetrates the deeper and darker reality of the sibling experience. Like many memoirists, I pondered whether to write my story as fiction – partly to have more leeway in developing the story, and partly because fiction is beautifully safe: it protects the author with a thick curtain of make-believe. Ultimately, I decided my story needed to be written as a personal memoir, with all of the curtains pulled back, without distance. It was the only way I felt capable of writing from the heart.
When I began, I thought Hazard was my brother’s story. I didn’t know it was mine. As a journalist, I was trained to stay out of the story, to observe and report from a distance. It took me many drafts to shift into the personal narrative voice – forbidden territory for me. Fortunately, I didn’t start with an outline or even with the concept of a story, both of which would have pushed me back inside a journalist’s head. I started with a box full of journals that I had kept for twenty some-odd years, and went through each one, marking with a red tab every place I had written about my brother. He wasn’t the only recurring presence – other organic themes surfaced throughout – but he was a constant presence, and the tabs were my first visual evidence of how much I carried him with me.
I lifted these journal entries out onto one long sheet of paper and they became the scenes that guided me forward. It was this sheet of episodes that I first took to my writers’ group. Some episodes developed into chapters, others became scenes and flashbacks that deepened the chapters. I relied on my older sister, Barbara Ann, many times – she was an ally who not only helped fill the holes of my memory but added layers to my perspective. I had a mentor, Brenda Peterson, author of the memoir I Want to Be Left Behind, who was leading my circle of writers and asked me questions and steered me along, pulling me back when I strayed too far off the central theme. I wrote each chapter as if it were going to end up in the bottom drawer of my desk. I needed that anonymity to reach the story, to drill down deep enough and stay with it – until I hit bedrock.
The first chapter of my book is actually the outgrowth of an exercise from one of Brenda’s memoir workshops. She asked everyone to write a scene that explained their entire life. My scene was the day my mother found out about my brother and collapsed, a moment when life changed, and that became the starting point of my memoir. After I had several chapters and an annotated table of contents, I wrote a book proposal, presented it to some editors and agents. Fortunately, Sarah Jane Freymann, a literary agent and co-author with Brenda Peterson of Your Life is a Book, took it on. But first, she wanted me to ponder my ending and she actually asked me to go ahead and write the last chapter. I was so stumped I attempted it several times. Eluding me was how to write the ending of a story that had no ending – one that did not have a neatly shaped turning point and denouement, and was in fact still going on, with . I did not want to gloss over the ongoing reality of my family’s struggle, or pigeonhole autism into a blessing. Even in this age of autism, with earlier diagnoses, genetic research, and support services in public schools, parents and siblings are wrestling to absorb and manage what it means to care for a disabled child, and moreover, to care for that child when he or she is no longer a child, but twenty, thirty, sixty years old.
Whenever I’m stalled on a piece of writing I get up and move, even if it’s cold and windy and pouring rain outside, and in this case, I took a long walk in the Grand Forest after a raucous rainstorm. I had been so steeped in memory, in striving to reconstruct my family’s past experience that I hadn’t taken stock of how things stood in the present. How could I describe being a sibling now, in this final third of my life with my brother? There in the forest, as I hiked through the forest among rain-blackened hemlocks and oaks, I heard my epilogue.
The last refinements came about after the book was accepted by Skyhorse and I worked with my editor, Olga Greco. With her guidance, I put the final stitches in place. It was a lengthy and iterative process, with as many writerly epiphanies as sibling surprises. As Brenda once said to our writer’s group: “When you write your memoir, you’ll understand your entire life.”
Indeed. The one thing I have come to understand most from the writing of this book is that two truths can exist side-by-side. The truth that being inside a family with a disabled child is hard, sometimes exasperating, and often miserable; and the other truth: that I am fiercely bonded to my brother in a deep and unfettered way. Whenever my mind turns to him or I’m about to see him, an emotion arises in me, unbidden and effortless – a profound tenderness. Not only for him as my little brother, but for his courage and his core: he a kind soul whose nature, features, and figure echo the Lutes side of my family, my mother’s side. I’ve come to know through the writing of my story that, in the face of everything, I love him deeply. Not because I am supposed to in order to be a good person, but because I do. He and I are family and share a deep bond, a childhood together, moments when we helped and comforted one another, when we took each other at face value and got on with life – moments that add up to a lifetime of indelible memories only siblings can have. In writing my memoir I have come to know this, and I’ve come to understand and forgive myself and all of my family for our foibles and hard times, both then and now.
Is this a blessing? Yes, it is.
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