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

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9780147516404: The Price of Silence: A Mom's Perspective on Mental Illness

The author of “I Am Adam Lanza’s Mother” speaks out about mental illness.

Like most of the nation, Liza Long spent December 14, 2012, mourning the victims of the Newtown shooting. As the mother of a child with a mental illness, however, she also wondered: “What if my son does that someday?”

The emotional response she posted on her blog went viral, putting Long at the center of a passionate controversy. Now, she takes the next step. Powerful and shocking, The Price of Silence looks at how society stigmatizes mental illness—including in children—and the devastating societal cost. In the wake of repeated acts of mass violence, Long points the way forward.

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About the Author:

Liza Long is an author, educator, erstwhile classicist, and single mother of four children based in Boise, Idaho. She has written and edited extensively for regional publications, including Eagle MagazineGreenbelt Magazine, and The Blue Review. Since her essay “I Am Adam Lanza’s Mother” went viral, she has appeared on theToday ShowGood Morning AmericaErin Burnett Out Front, and Anderson Cooper 360, among others. She presented a talk on stigma at TEDx San Antonio in October 2013.

Excerpt. Reprinted by permission. All rights reserved.:

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 live healthy, happy, productive lives.” By sharing our stories, by putting familiar faces to a frightening, misunderstood, complicated disease (or rather, a group of diseases, a cluster of developmental disorders), we can begin to chisel real change from the massive edifice of stigma that has stood too long in the way of effective treatments.

Every minority group in history has had to fight for rights, for recognition, for respect. Less than one hundred years ago, women could not vote. Even twenty years ago, gays were viewed with hostility and suspicion, AIDS as a “homosexual disease.” And yet today, a majority of Americans support gay marriage, and just four years after Proposition 8 promulgated hate in California, the Supreme Court overturned the Defense of Marriage Act and restored equality to a class of citizens that had been denied majority rights.

But in our country, people who have mental illness are still treated like second-class citizens. We treat illness above the neck differently than from the neck down. Certainly no one advocates a return to the days of institutionalization. But when the institutions closed, where did people with mental illness go? The promise of community-based resources to provide much-needed care proved illusory. Instead, today we “treat” those with mental illness or mental disorders, including our children, in prison. And in many underprivileged areas, where the stress of poverty is a pervasive and persistent trigger for mental illness, a “school-to-prison” pipeline has denied millions of children a meaningful future. The bad institutions closed and were replaced by something much, much worse, as mental health advocate and author Pete Earley details so vividly in Crazy: A Father’s Search through America’s Mental Health Madness, which uses his son’s experience with the law to examine how people with mental illness are mistreated by the criminal justice system.

Then when a tragedy like Newtown happens, former National Rifle Association president Sandy Froman (and a host of others) can say things like, “We have to keep guns out of the hands of these insane people.”

Aside: This is not a book about gun rights. I live in Idaho, and we like to hunt here. But as the parent of a child with mental illness, I would never own firearms, let alone keep them in my home. In this one respect, I cannot understand Nancy Lanza, though in other ways, her experiences with her son Adam are hauntingly familiar to me.

This book is not about keeping guns out of the hands of dangerous people, though certainly that question deserves exploration. It’s about making children—and people—less dangerous.

The second audience refused to believe what I wrote about my son when I put my story into the ruthless stockade of public opinion. “You’re telling me that your only option for your son is jail?” one incredulous reporter asked me after my blog post went viral. “There’s no way that can be true.” It was, and it still is in Idaho and in other states. In fact, a 2013 study conducted by the George Washington University Center for Health and Health Care in Schools concluded, “From significant disconnects among the multiple institutions that serve children and their families to chronic financial instability, the children’s mental health system is fragile and at-risk.” In this book, I’ll introduce psychiatrists, lawyers, law enforcement officers, educators, and disability rights advocates who can all witness to the fragility of our current patchwork and costly systems.

I’ll also share stories from other parents who have endured the same societal blame and stigma for their children’s behavior that I have personally experienced with my own son. When I wrote about my experiences with my child in my blog, the second audience blamed me, just as psychiatrists blamed so-called Refrigerator Mothers in the 1950s when children presented with the baffling (then and now) symptoms of autism. As a mother of four who has seen the Mommy Wars from both fronts—I was a stay-at-home mother for thirteen years and have subsequently embraced the world of work with perhaps too much enthusiasm—I actually understand this criticism well. What loving mother would not examine her own parenting, from her history of depression to her failed marriage to her decision to reenter the workforce, and not find herself somehow wanting? When our children suffer—whether it’s mental illness or cancer or allergies—we want to know why, and we naturally start with ourselves as the root cause.

When my painful story went public, I thought that I was the only mother in America who felt the way I did. But I quickly realized that I was far from alone in my struggles to find care, support, and understanding for my son and for myself. This book follows my own journey through the labyrinth of impassive institutions and jargon-ridden systems that parents of children with mental illness and mental disorders must navigate, chasing false promises of hope (this elimination diet, that antipsychotic drug, another behavioral intervention) and finding real promises of treatment and quality of life.

I have divided the journey into stages, using the loosely chronological arc of my son’s life to expose the endemic problems with patchwork systems that form the current pathetic state of children’s mental health services. These systems include hospitals, schools, courts, and detention centers. Each institution requires parents to become versed in an alphabet soup of acronyms: in education—IEP, 504, ADA, IDEA, BIP, AT, CD, DOC, ED, FERPA, FAPE, BA, LRE, OHI, OSEP, OT, PT, SBS; in health care—SMI, ACA, PRN, HIPAA, EMR, NIMH, DD, DSM-5, EBM, EOB. That’s just for starters.

I have mentioned only in passing things that did not directly affect my own family and which have been eloquently covered elsewhere—addiction and substance abuse, for example, which David Sheff writes about in his heart-rending book Beautiful Boy, or depression, for which I could refer the reader to a host of books, though perhaps my personal favorite is Andrew Solomon’s The Noonday Demon.

But the journey starts with me. I did not realize it at the time, but my academic training in Classics (a little Latin, more Greek, and everything and everyone those two languages and cultures touched through the history of Western civilization) prepared me well to be the mother of a son who has both developmental disabilities and a serious mental illness. As a lifelong student of the humanities, I fear that our increasing reliance on science for answers about the brain will cause us to lose our appreciation for the soul. Indeed, the soul’s condition is the traditional purview of the psychiatrist, who by definition is not a mind healer but a “soul healer.”

Our apprehension of mental illness began within the context of stigma; history and religion continue to shape our understanding of mental illness and mental disorders, but they also contribute to the “otherness” of those who have mental illness, perhaps because we are afraid to look in the mirrors they carry and see ourselves. Freudian analysis, though now widely discredited, finds its roots in ancient Greek mythology, in tales of horror that rival our modern media bloodbaths. Consider Oedipus, for example, or Thyestes, who eats his own children, or Medea, the spurned consort who murders her sons when Jason leaves her for another woman.

As a mother who has faced the stigma of mental illness head-on, I believe that we have not quite left the cultural underpinnings that ascribe mental illness to “evil spirits” or witchcraft. Yet in our society’s worthy quest to understand and heal the brain, it is important that we don’t forget the soul—what makes each of us and our experiences unique—or relegate it to a lesser state, viewing the brain as merely another physical organ, to be treated like the liver, the pancreas, the heart.

I spend perhaps more time than the average person thinking about theodicy, the problem of evil in the world. This problem is one that religion seeks to reconcile: if God is good, and if his creations are good, then where does evil come from? Many modern-minded people face the problem of evil and decide to abandon theology altogether. But I have taken Søren Kierkegaard as my mode...

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