The Price of Silence: A Mom's Perspective on Mental Illness - Softcover

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Liza Long is an author, educator, erstwhile classicist, and mother of four children based in Boise, Idaho. She has written and edited extensively for regional publications, including Eagle Magazine, Greenbelt Magazine, and The Blue Review. Since her essay “I Am Adam Lanza’s Mother” went viral, she has appeared on theToday Show, Good Morning America, Erin Burnett Out Front, and Anderson Cooper 360, among others. She presented a talk on stigma at TEDx San Antonio in October 2013, and in 2016 she completed her Ed.D with a dissertation with research focused on mental health advocates and leadership.

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INTRODUCTION

You probably don’t know me. But chances are good you’ve read something I wrote. On December 14, 2012, two days after my thirteen-year-old son—let’s call him Michael—was placed in an acute care mental hospital, twenty-year-old Adam Lanza shot his mother, then went to Sandy Hook Elementary School and killed twenty first graders, six educators, and himself. My second thought on hearing that horrible news was probably similar to most people’s first thought. I wanted to rush to my children’s elementary school, to hold my second-grade daughter and fourth-grade son in my arms.

But my first thought was something else. My first thought was, “What if that’s my son someday?” That night, I sat down and wrote my truth. I admitted my feelings of pain and fear and helplessness about my son’s condition and my inability to help him. I wrote about the years of missed diagnoses, ineffective medications, and costly therapies. I expressed my fear at my son’s unpredictable and sometimes violent rages. I shared the pain of watching my son handcuffed, in the back of a police car. Then I posted the essay, entitled “Thinking the Unthinkable,” to my formerly anonymous mommy blog, The Anarchist Soccer Mom.

Here is some of what I wrote:

This problem is too big for me to handle on my own. Sometimes there are no good options. So you just pray for grace and trust that in hindsight, it will all make sense.

I am sharing this story because I am Adam Lanza’s mother. I am Dylan Klebold’s and Eric Harris’s mother. I am James Holmes’s mother. I am Jared Loughner’s mother. I am Seung-Hui Cho’s mother. And these boys—and their mothers—need help. In the wake of another horrific national tragedy, it’s easy to talk about guns. But it’s time to talk about mental illness.

I sent my anonymous cry for help screaming into the Internet abyss. To my surprise, I heard an echo. After I posted the anonymous essay to my Facebook page and encouraged my friends to share it, they did, and so did their friends, in record numbers. The next day, my good friend Nathaniel Hoffman, editor of Boise State University’s online journal the Blue Review and one of the few people who knew about my blog, called me and said, “I want this piece. It’s important.” I readily agreed. “And I want you to put your name on it,” he added. “Until people start putting their names on these stories, they aren’t real.”

Nate’s request made me pause. I was afraid—not of what the world would think—but of what my friends, my coworkers, my community would think. Nate was one of just a handful of people who knew about my ongoing struggles with my son’s mental illness, who knew why I had to miss work so often or why I sometimes cried in my cubicle or cringed when my cell phone rang.

But in the end, I agreed to publish the essay with Nate’s suggested (and better) new title, “I Am Adam Lanza’s Mother.” I discovered that words have power. These were my words, and this is my story.

The Internet response to my cry for help was overwhelming. Before December 14, 2012, my formerly anonymous blog had about 4,000 hits total. Now The Anarchist Soccer Mom has had more than 3 million views and nearly 4,000 comments. The reprint on theHuffington Post (which picked the story up from the Blue Review and the Seattle Stranger) was one of the most popular articles for days. It received 1.2 million likes on Facebook (and 323,000 shares), more than 15,000 comments, 16,800 tweets, and 29,800 e-mails.

People are still talking about it. I clearly touched a nerve in sharing my family’s painful experiences with mental illness. Journalists from Anderson Cooper to Miles O’Brien to Diane Sawyer have asked me to tell our truth. But not everybody gets it. I have learned through this experience that stigma, for children and for families who struggle with mental illness and mental disorders, is still very real.

I’m writing this book for two very different audiences. The first audience knows mental illness and lives with it every day. For this audience—the audience I know best—mental illness is a blond boy with a butterfly, a parent putting a meal on the table after a long day at the office, a patient expressing frustration over a new medication’s unpleasant side effects. This first audience experiences life with mental illness as “normal.” And its members—mothers, fathers, children—cried out in solidarity with me: “You shared my story! Thank you for putting into words something I did not dare to say.”

But I am also writing for a second audience, an audience that is surprised to learn that one in five children in the United States will suffer from a serious and debilitating mental disorder, an audience that believes mental illness is something we still shouldn’t talk about except behind closed doors in private rooms, an audience that is convinced that the sometimes maladaptive behaviors of mental illness are a “choice.” The second audience knows mental illness as a series of hollow-eyed young men flashed on screens above shocking and horrific statistics, body counts in a war with no named enemy except the enemy within. This audience’s primary understanding of mental illness comes from distorted and exaggerated media portrayals rather than from everyday encounters. This audience is afraid.

Make no mistake: I believe based on my own very real and often frightening experiences that people with mental illness, when not properly treated, can be dangerous to themselves and others, with potentially horrific consequences for themselves, their families, and society. When we talk about mental illness, we must also talk about violence, no matter how uncomfortable that conversation is. I shared my own story of frustration and pain in response to a horrific act of brutality that took the lives of innocent children and teachers. While it’s true that people who have mental illness are more likely to suffer violence than perpetrate it, the never-ending threat of unpredictable, senseless brutal acts is what makes the stress of day-to-day life with a child who has mental illness similar to what soldiers in combat experience.

But I also love my son. And I believe that effective treatments exist, and that even more effective treatments are moving from the margins to the mainstream every day. As Michael commented after reading a 2013 article in Smithsonian magazine about the promise of 3-D printing, “Maybe I’ll invent a teleporter that does more than just transport people to where they want to go—it also reads their DNA for mistakes, then fixes those mistakes and prints out a new, perfect copy of the person.”

Maybe. Or maybe we’ll find gene therapies, or medications that actually work, or new modes of therapeutic treatment. Maybe we will take the burden of care for mental illness off the already heavily laden backs of law enforcement and the criminal justice system. Maybe we’ll learn how to provide appropriate educations for children with mental disorders. Maybe we’ll provide meaningful support to families.

I’m writing this book to give a voice to parents of children with mental illness. But I am also writing because I believe that those of us in the first audience have an obligation to share our experiences with the second audience. We have to say, “I have mental illness. My child has mental illness. The woman who cuts my hair or researches my stock-market portfolio, the man who bags my groceries, or teaches my children, has mental illness. And all of us want what any person would want: to...