A Conversation with Margaret Combs

Margaret Combs is a mother and a writer with an award-winning career in journalism. Combs began writing as a reporter for National Public Radio, and her work has since appeared in the Boston Globe, Independent School Magazine, Boston Parents’ Paper, and others. She has won awards for her documentary on children of incest and her articles about the health risks of guns in the home and the environmental impacts of disposable diapers on solid waste landfills. Combs’s career shifted from journalism to communications and public relations for The Cambridge School of Weston and Tufts University, where she increased visibility for both institutions in major outlets, including CNN and NBC’s World News Tonight. She is now the director of communications for the Northwest School in Seattle. In her book Hazard: A Sister's Flight from Family and a Broken Boy, Combs shares the emotional story of growing up with a severely autistic brother during an era of ignorance toward the disability. Writer Rhonda Havig talked with Margaret Combs about writing a memoir, growing up with an autistic sibling, and how that experience affected her as a mother.

Rhonda Havig: Your writing in Hazard is descriptive, drawing the reader further into each scene, making the story seem more personal. How did your journalism background help you in writing an engaging narrative?

Margaret Combs: As an NPR reporter, I learned how to work with sound and dialogue. Sound and voice are powerful, emotional elements, and using them effectively brings a story alive. Because air time is precious and limited, I learned how to penetrate the heart of the story rapidly and identify what needed to be said to take the story beyond the mere facts, to infuse the human complexity. Where to start a story was the most important decision I made as a journalist: that lead sentence—the doorway into the narrative—determined the shape of the story and whether or not the reader would stay with me long enough to absorb the essential points of the story.

Another aspect of journalism that prepared me to write memoir was the emergence of narrative journalism. It first burst on the scene with Truman Capote’s In Cold Blood. This kind of writing was based in fact but called forth techniques that straddled expository journalism and storytelling—understanding how to set a scene, incorporating dialogue, putting the reader in the room with the people in the story. I felt the “truth” of any story existed in the underbelly, the place no one was talking about, and I felt compelled to reveal that underbelly: I wrote about child abuse and family incest; childhood depression; joint custody in divorce and how it is not all it is cracked up to be for the child who may be switching households every few days or weeks. I was a young mother myself as I was writing these stories, and I wanted to speak for children, to call out their experiences, often lost in the world of adults.

RH: What compelled you to shift from writing pieces about other people and situations to sharing your own story about growing up with an autistic sibling?

MC: I saw a crucial story that wasn’t being told. When I first began to think about writing this book, about ten years ago, there was an explosion of information and awareness coming out about autism, most of it intended for parents to help them cope with the initial shock of diagnosis and to provide the latest scientific knowledge about causes and treatment. What I did not see was the sibling story—what it was like to grow up inside a family going through this profound upheaval and especially over the arc of a lifetime.

A seriously disabled or ill child deeply affects every member of the family. In the midst of all the trauma and worry, parents may not see their other children standing in the doorway, taking it all in, trying not to make noise or demands, trying not to add to the chaos. The first book I found that addressed this sibling experience was Being the Other One by the Australian journalist Kate Strohm. In a compelling way, she interviewed a wide range of people who had siblings with cerebral palsy, cystic fibrosis, developmental delay, autism, and bipolar disorder. It led me to believe that the experience I had was quite universal to children who had siblings with any type of serious mental or physical health issue. She told the story through many voices, occasionally adding her own. After reading her book, it was clear to me that I did not need to tell my story as a journalist—Strohm had done a wonderful job with that. What I needed to write was the personal story, an honest and unflinching personal narrative from the inside out. If we are going to understand the impact of autism and all disability on our society—in this so-called Age of Autism, as some are calling it—we need to know how it affects siblings, as well as parents.

RH: Writing a memoir can be intimidating because it’s so personal and might bring up unpleasant memories. What advice do you have for someone who wants to share a potentially difficult story?

MC: Writing memoir takes a lot of courage. Anyone tackling memoir needs both privacy and a trusted circle of listeners. I wrote my chapters as if no one was ever going to read them, as if they were going into the bottom drawer of my desk. That is the only way I could get the words down without censoring myself. I even started by writing some early chapters in third person as well as changing the names of myself and my family members, so I could get some distance and perspective. This helped me access an omniscient eye, which was critical to tell the story not only with honesty but with compassion.

RH: While writing Hazard, was there anything that surprised you?

MC: Oh my word, yes, so many surprises. As to the art of writing a memoir, I was surprised and relieved to discover the point of view of the “mature narrator,” the one who can step into a scene and reflect on what was going on, to supply the wisdom the child did not possess at the time of the events. To speak about family trauma is not enough. My job as a memoirist was to do more than simply dump a lot of anguish in the reader’s lap; my job was to stay with it and muck with the tangled emotions, to do the hard work of making sense of those events both for the child in the book and for the reader. And to find compassion for the people going through the story, not just for me as a little girl, but for my mother and father, for my sister, and especially for my brother. The overlay of wisdom and perspective is what makes memoir worth reading, and I would even say essential to our culture and society today. We not only need to hear our human stories, we need to grow from them, to gain insight as well as see ourselves in the stories of others.

My biggest surprise—something that didn’t come easily—was finding joy. I began the book in a fairly dark place, a place that drove me to write the book. Most of what I had seen written about autism up to that point was highly sugarcoated: I read more than once how autism was “a blessing.” For me, tying autism up in a neat package with a bow negated just how hard the experience was for me as a sibling and also for my entire family. Yes, there are epiphanies and tender moments, but these alone do not tell the whole truth. To restrict the story to a blessing does a disservice to families like mine, to my mother who was so derailed by my brother’s diagnosis, and to my brother, who has to struggle every day to be in the world. That said, I was so determined to tell the hard side of the story that I was blind to the complexity of emotions that layered it. As humans, we are a mess of conflicting emotions, and if darkness is all you give the reader, you haven’t done the work you need to do. I had to be forced to see this. After I brought several darkly written chapters to my writers’ group, my writing mentor, Brenda Peterson, suggested I write a chapter without my brother in it. I had to take him out of the room and write a scene. That assignment turned into “Trapeze,” a chapter in the book about my life as a competitive gymnast. That is when I first began to access joy and to see that my mother was part of that joy.

And, finally, the last section of the book is titled “Fortuity,” which, of course, means surprise. As I neared the end of writing my book, I felt some anxiety—partly because this story had no ending. There was no happily-ever-after moment when my brother reached a day that he went off to college and started a life of his own. This is the reality of disability: it does not end, nor does it miraculously resolve. So how was I to end my story? When I was about halfway through the chapters, my agent, Sarah Jane Freymann, pushed me to leap over the rest of the chapters and envision the end. I really struggled with this, drafting one possibility after another. At long last, I took a long walk in the forest near my home, both to avoid what I had to do and also to clear my head. It was on that walk that the ending came to me, one that felt authentic and true to my story.

RH: In the book, you talk about feeling a protectiveness and tenderness toward your brother, Roddy, and later toward a little boy with autism you encountered while teaching a gym class. How did these feelings and experiences with Roddy affect you as a mother?

MC: Most profoundly, for better and for worse. I did not register it at the time, but my instinctive connection with the little boy, told in my chapter called “Sebastian,” was immediate. I noticed on some level that others were not as patient or understanding with him, which baffled me. I couldn’t fathom being any other way. This same heightened awareness followed me into motherhood. The downside was that I worried, especially during my pregnancies, that both of my sons would have autism. I was hyperaware and repeatedly pressed my pediatrician to check for signs whenever I came for a developmental check-up. I’m sure I seemed like an over-obsessed worrier. But, at the same time, other parts of my mothering were fine-tuned by my experience with my brother. I tended to see the world through my sons’ eyes; their emotions were so clear to me. Even when they misbehaved or acted out and challenged my patience, I never lost sight of their interior selves.

RH: You were observant of how your mother raised and cared for Roddy. What is the most important lesson you learned from your mother by watching her with him?

MC: My mother was so deeply kind and caring with my brother—a marvel considering how young she was, 24 years old, when he arrived. Even as a teen, I was aware of her fierce loyalty and determination not only to get him the help he needed but be there for him when life got to be too much, to let him know how much she understood his frustrations. My chapter, “Tears,” is as much a tribute to her mothering as it is to my anguish as a sibling. That chapter was by far the hardest one for me to write, not only because revisiting that time was painful for me, but it was also a painful time for my mother. Her tender voice comforting my brother still brings tears to my eyes. The lesson I learned from her was that sometimes the best mothering is to simply be there, to be present, even when you cannot fix the trouble.

RH: Times have changed since Roddy was a child, and, now, families have more information and support available. As a sibling who grew up in a time when people were less enlightened about disabilities, in general, what encouragement would you offer to someone who is struggling with a child, sibling, or other family member with autism?

MC: Happily, there is a bounty of information now and a stunning amount of new research coming out almost every day. Autism is no longer an unknown [diagnosis]. There is great comfort in knowing parents today do not have to feel as alone as my parents did a few decades ago. Still, this does not in any way diminish the initial shock of learning that a child has a disability today; one particularly difficult thing about autism is that it often doesn’t appear in the early months of infancy. Parents have several weeks—even months—of bliss with a new baby and then are hit with a devastating diagnosis. It can be extremely hard on a marriage, and that, in turn, will have an indelible impact on the siblings. So it’s important to remember, as we laud all the research and heightened societal awareness, that families, parents, and siblings still struggle deeply and need the support of professionals, services, and community.

RH: What are you working on now?

MC: I’ve started something new, but I’m keeping it close to my chest for now. One thing I’ve learned is that every piece of writing needs privacy in the beginning, especially if it’s on the creative side. Talking about an idea or angle too early—before it’s formed—lets the air out of the tires. The writer loses momentum and traction. It’s the most wonderful stage, though—the beginning of the writing process when everything is possible and there exists an infinite number of twists and turns to the story. It’s what makes a writer—at least this writer—bent on opening the screen or notebook once again and stepping through the door.