What Would Jesus Sing?

Maybe It's Time for Some New Christmas Carols

I was raised by Mormon hippies. In addition to traditional Christmas carols like “Hark, the Herald Angels Sing” and “We Wish You a Merry Christmas” (my father was especially fond of the “figgy pudding” verse), we learned the complete canon of 60s protest anthems, including one of my favorites, as sung by Peter, Paul, and Mary, “If I Had a Hammer.”  The song was written by Pete Seeger and Lee Hays in 1949 to reflect the progressive labor movement and experienced a “second coming” as a civil rights era anthem in the 60s. 

Remember when people could protest bad stuff and change the world?

It’s that time of year again—the time when media professionals take advantage of unusually quiet offices to compile their annual “Top Ten” lists. Most 2014 lists will likely lead with the tragic deaths of Michael Brown and Eric Garner (and perhaps of Brooklyn police officers Rafael Ramos, and Wenjian Liu)—manifestations of the same civil rights tragedies that my parents used to sing about 50 years ago. In fact, the past few years have seen several stories of marginalized people protesting privilege and power.

In 2011, Occupy Wall Street was declared the most important news story in a year that included the Gabby Giffords shooting by a man who had schizophrenia and the deaths of Osama bin Laden and Steve Jobs. I had a chance to see the Occupy movement for myself when I was visiting friends in November 2011, the weekend before Mayor Bloomberg shut the Zuccotti Park party down. My first-hand impressions were not positive. I talked to the self-proclaimed media liaison, a pleasant-faced union organizer who refused to give me his real name, though he told me he had been bussed in from Pittsburgh. We had an interesting discussion about classism and Marx, the kind you can’t generally have in Idaho. But while I wanted to sympathize with the message of the 99 percent, what I witnessed was less a collection of legitimate movement sympathizers and more an exploitation of homeless people, many with mental illness.

(Aside: 2011 also saw a black man, Troy Davis, executed by the state of Georgia for the 1989 murder of an off-duty white police officer. Davis steadfastly maintained his innocence, and there was no physical evidence linking him to the crime).

In 2012, the top stories were mass shootings: the tragic deaths of 20 first graders, 6 educators, Adam Lanza, and his mother in Newtown, Connecticut; and the Aurora, Colorado movie theater shooting by James Holmes, a young man with schizophrenia. The shootings trumped even the 2012 presidential election and Hurricane Sandy.

(Aside: In February 2012, an unarmed black teenager, Trayvon Martin, was shot and killed by George Zimmerman; according to Pew Research Center, 70 percent of blacks closely followed the story, while only 30 percent of whites cared.)

In 2013, we lost a cultural warrior, Nelson Mandela, and gained another one, Pope Francis. George Zimmerman was acquitted of second degree murder in the Martin case, sparking protests that have simmered and erupted ever since. Princess Kate had a baby, and two Chechen brothers brought terror back to America in the Boston Marathon bombings.

(Aside: The most prominent mass shooting of 2013, Eliot Rodger’s Santa Barbara rampage, didn’t make the top ten news stories, nor did any of the 26 other mass shootings that year. Still, in 2013, we talked about guns, and we talked about mental health, and some of us even hoped we would do something. Representative Tim Murphy introduced a comprehensive mental health reform bill, the “Helping Families in Mental Health Crisis Act.” Despite broad-based bipartisan support, the legislation died in committee this year.)

In 2014, we heard about police shootings (many of those killed had mental illness). And we heard a lot about Ebola. As of December 22, the World Health Organization reported 7,518 deaths in West Africa from the virulent hemorrhagic fever. The World Health Organization reports that suicide deaths globally are more than 100 times more common, with more than 800,000 people dying by suicide each year. In fact, suicide is the second leading cause of death after accidents for people ages 15-29.  

(Aside: We talked about suicide in 2014 too, first in February when Phillip Seymour Hoffman died of an overdose at the age of 46, then with beloved comedian Robin Williams’s tragic death in August. But neither story made the top ten cut, nor did the fact that James Holmes, who is known to have schizophrenia, is facing a death penalty trial, while Scott Panetti, who also has well documented schizophrenia narrowly avoided death at the hands of the State of Texas.)

Which brings me to Christmas.

Forgive me for asking, but sometimes I wonder, when I look at the mess this world has become: what would Jesus do? Yes, that Jesus, the “reason for the season,” the baby god born in poverty, raised in a climate of oppression and social injustice?

Jesus would demand change. Jesus would tell us to love each other. Jesus would die for his truth.

Meanwhile, we buy presents—so many presents!—and bake cookies and sing “Have a Holly Jolly Christmas.” 

We are comfortable with the baby Jesus, lying serenely in his manger while angels watch over him.

We are less comfortable with Jesus in the synagogue, speaking truth to power. Or Jesus on the cross, dying to save people who just don't want to be saved.

I think that if Jesus could choose his own carols, he would prefer Pete Seeger’s call to action: “It’s the hammer of justice! It’s the bell of freedom! It’s the song about love between my brothers and my sisters all over this land.”

Maybe we need some new Christmas carols in 2015.

Sins of the Mother

A child's death by suicide is every mother's worst nightmare.

Why Blaming Nancy Lanza for Adam’s Illness Is Easy (and Why We Need to Stop)

“Mom, I don’t want to be anymore.” My son, four years old, his eyes swollen and red from sobbing, burrowed his white duck-fuzz head against my chest.

I froze. “What do you mean?” I asked gently. “Everything is okay now. The nightmare is over.”

He looked up at me. “I want to be a zero,” he replied. “I don’t want to be anymore. I want to be a zero.”

Nothing in the parenting books or classes about preschool behavior prepares you for this: your young child’s desire to end his own life. True, “Michael’s” nightmares were getting worse, and he sometimes sleepwalked. Days could be even tougher: Michael would throw tantrums that lasted for hours and left us both exhausted. I didn’t know what to do.

As he grew older, his suicidal thoughts became more frequent and more detailed. He threatened to kill himself several times a week. Though I normalized many things about my son’s unpredictable and sometimes violent behavior, I never got over the suicide threats. They still haunt me.

For this reason, I followed Brittney Maynard’s tragic life-ending choice with a different perspective than many people. While I respect her struggle and her wish to end it (I too have lost a loved one to cancer), I know many other young people who are diagnosed with a serious, life-threatening illness who repeatedly express a desire to end their own lives. My son was one of them.

So was Adam Lanza.

Now a new report from Connecticut’s Office of the Child Advocate details the many ways the system failed Adam, and the children he killed at Newtown in December 2012.  One significant finding: Adam was “completely untreated in the years before the shooting and did not receive sustained, effective services during critical periods of his life.”

In fact, if you read the summary of Adam’s early life, it looks like my son’s (and many other children’s) path. Adam had developmental challenges in early childhood. I’m sure at least one person told Nancy, “He’s just a boy,” or “He’ll grow out of it.” School personnel identified social/emotional challenges that became more apparent after fourth grade. I’m sure that’s when they started suggesting that Nancy home school her son, ostensibly for his own good, but actually to prevent disruptions in the learning environment. He was initially evaluated by a costly outside expert (Yale), with a recommendation for a comprehensive treatment plan of the type, no doubt, that bankrupts even moderately wealthy families like the Lanzas. In this respect, my son differs from Adam: we never had access to that kind of resource until my blog about Newtown went viral.

Where my son’s path diverged from Adam’s is at age 13, when my son was finally diagnosed with bipolar disorder. Since that diagnosis and treatment began, my son has not had any violent behavioral outbursts or suicidal thoughts. He is back in a mainstream high school, doing well in all his classes, writing a sequel to his first novel (tentatively entitled The Demigods from Outer Space), and starting a chess club.

But here’s the thing: I don’t attribute my son’s remarkable progress to anything special about my parenting. I was lucky, period. I got a diagnosis for him, and medications that work. And most importantly, I was able to intervene before my son turned 18, despite the many wrong turns we took in the baffling and fragmented mental health care maze early on.

When I tell people—including media professionals—that parents cannot help their sick children after the age of 18, many of them are surprised. After all, if your 20-year old son was in a car accident and suffered a traumatic brain injury, you would be right there by his side, communicating with his healthcare team, and likely even making decisions about his care if he lacked the capacity to do so.

When your child has a serious mental illness and is over the age of 18, it doesn’t work like that. Serious mental illness is classified as “behavioral health,” and in most cases, people who have behavioral health problems have the right to refuse treatment.   The very public spectacle of Amanda Bynes’s breakdown has introduced many people to this terrible parental conundrum for the first time.

Unlike me, Nancy Lanza was incredibly unlucky. Yet the Child Advocate report, in the time-honored tradition as old as Eve of blaming the mother, concludes that Nancy “enabled” her son and was perhaps in denial of the seriousness of his illness.

I completely understand how that can happen to a parent who has tried, many times, to get services, and failed. I completely understand how that can happen to a mother who is raising a potentially violent son on her own, without support. And I can completely understand how that can happen to a parent in a society that stigmatizes mental illness and medication, that insists on treating mental illness as a “choice” rather than as a disorder.

Through the years, bit by bit, Nancy normalized Adam’s extremely abnormal behavior. In fact, what seems very bizarre to outsiders becomes “normal” for many families who are struggling with mental illness. This concept is difficult to understand unless you have actually lived it. But if you are living it, I know you’re nodding your head in agreement right now.

High profile murder-suicides like Columbine or Newtown bring attention to the problem of mental illness. Yet two years after Newtown, we still don’t have solutions for children and families. And two years later, both this most recent report and the media are still blaming the mother.

What will it take? How many more families will suffer from tragedies because we lack effective treatments?

Mental health professionals tell us that suicide is preventable. But if numbers are not decreasing, it’s clear we need better solutions, beginning with earlier diagnosis and intervention for children who suffer. That’s one area where I agree completely with the Connecticut Child Advocate report.  A child’s death by suicide is every mother’s worst nightmare. Though Nancy Lanza paid the ultimate price when she couldn’t get help for her son, at least she was spared this: she didn’t live to see her child kill— or die by suicide.

Dear Claire Dunphy

From one soccer mom to another, here’s why your Halloween Insane Asylum of Horror was anything but awesome

I'm going with Awesomeland.

You may remember seeing me at the soccer field, the grocery store, the PTA meetings. Like you, I’m pretty Type A when it comes to raising my kids; for many years, I viewed birthday party goody bags as a competitive sport. But then something happened to my family that I wouldn’t wish on anyone: my second son began to show symptoms of a serious chronic illness.

By the time he was in preschool, we knew something was not right. At first, they said maybe it was autism. Later, they would tell us it was Oppositional Defiant Disorder, or Intermittent Explosive Disorder, or Attention Deficit Hyperactivity Disorder. There were so many labels and different medications! We took parenting classes, got on wait lists for specialists, and restructured our entire family’s life around the child who had an illness, as many families in our situation do. We also became increasingly isolated from our friends and community, as it became harder and harder to manage our son’s behavioral symptoms.

In the midst of the struggles to find an answer, my marriage disintegrated. It was not my son’s fault. But the stress of raising a child with a serious illness can prove overwhelming sometimes. And suddenly, like many other single moms, I was doing it alone. I remember one time at the soccer field, when my son’s shoe came off, and he couldn’t fix it, and he collapsed, wailing and screaming. I will never forget the look of absolute disgust on your face and the faces of other parents that day, the look that said, “What’s wrong with that mom? Why can’t she control her kid?”

Or the time in the grocery store when my son was screaming “Child abuser! Child abuser!” at me and you threatened to call the police and took down my license plate number. Fortunately, the store manager protected me. “I understand,” he whispered to me. “My nephew has autism.”

Or the time you stood at your front window and gawked when I called the police on my own son, because in America, that’s what we have to do when our children have an uncontrolled brain attack. You stared as three policemen put my son in handcuffs and carried him twisting and screaming to the back of their car. You didn’t hear the policeman say to me, “You’re a good mom, ma’am. Never forget that. We know your son needs help, and we will help him to get it.” (God bless our crisis intervention team-trained police department!).

When you found out my son was in an acute care psychiatric hospital, you didn’t offer to watch my other children so I could visit him. You did not bring me a casserole. Mental illness is not a casserole disease, I guess. Fortunately for us, after nine years, my son finally got the correct diagnosis. I was relieved when I found out he had bipolar disorder, because I respect and admire my friends and acquaintances who are successfully managing their bipolar disorder and living productive, happy lives. This was the future I had thought my own child could never have. Suddenly, we had hope.

I’m a soccer mom like you, Claire. And what happened to my child could happen to your child. Mental illness is not a choice or a character flaw. This is why your Insane Asylum was so offensive to me and to my son. It’s not funny to ridicule people who are sick. Worse, the image of mental illness you portrayed is not remotely what mental illness really looks like.

You seemed to recognize your cruel mistake when your neighbor Ronnie lied to you and told you his wife had spent six months in the “cuckoo farm” (lovely words, those). But what about all the real people—children included—who could have been harmed by your Halloween “joke”? What message did you send your own children? My son has worn a straitjacket too, but his was during a behavioral episode. And like many children with mental illness, he has been institutionalized, though we don’t really have insane asylums anymore. We have something far worse: prison. My son was in juvenile detention four times before he was 12 years old, not because he's a bad kid, but because he had behavioral symptoms of a brain disease.

Claire, here are some truly scary facts about mental illness:

•  In any given year, only 20 percent of children who need treatment for psychiatric disorders actually get it. 
• Half of all mental illnesses start before the age of 14. 
•   65-75 percent of youth in juvenile detention have at least one mental illness.
• It costs states $5.7 billion per year in the U.S. to incarcerate an average of 93,000 youth. 
•  There is not a single child psychiatric hospital bed in Orange County. Not one. 
• One in five people with bipolar disorder (what my son has) die by suicide. 
• Worldwide, suicide is the cause of death for more than 800,000 people each year. 
• Adolescent males with mental illness are being shot and killed by police in ever increasing numbers. 

Many people have defended your actions, saying “It’s Halloween! She was just having fun!” Others have accused me of focusing too much on political correctness. But I don’t think I’m out of line in asking for some basic respect from you. We talk a lot about the word “stigma” when we talk about mental illness. But what we really mean is “discrimination.” Your unrealistic and negative portrayal of mental illness perpetuates that “us vs. them” mentality that allows those of us who are not living with it to continue thinking mental illness is a choice, or that it is caused by bad parenting.

So Claire, as a fellow soccer mom, I’m officially asking for an apology. Your Insane Asylum of Horror, had you let it stand, would truly have been the most frightening house in the neighborhood. But for different reasons than you think.

P.S. To the writers of Modern Family: one in five children in the U.S. will suffer from a serious and debilitating mental disorder at some point before age 18. You have five children on your show. I challenge you to introduce mental illness for one of those children into next season’s plot line. You could use your platform to change people’s perceptions about mental illness in real and meaningful ways.

The Price of Silence

Dear Friends,

This is a humbling day for me. The first time I read a book and realized the power that words can hold over our hearts and minds, I knew that I wanted to write. Today, my dream of publishing a book has come true with The Price of Silence: A Mom's Perspective on Mental Illness, from Hudson Street Press.

But for me, the price of realizing my dream was beyond anything I imagined. I wrote The Price of Silence because like most  of us, after Newtown, I wanted answers. My quest through the complex and often hostile systems that families and children who have mental illness must navigate was personal: I live this experience daily with my dear son.

Kirkus Reviews described my book as "a searing indictment of the lack of affordable care available for the treatment of mentally ill adolescents."

Andrew Solomon, author of Far From the Tree (which everyone should read), wrote: 

In this courageous, determined, radical book, Liza Long exposes the dearth of alternatives for parents of kids with mental illnesses, the shame that attends their perceived failures, and the hope that such families may find their collective voice and demand better options.  I hope her passionate cry is heard far and wide.

I am profoundly grateful to the families, providers, police officers, educators, and advocates who shared their often painful stories with me. It's not easy to talk about mental illness; I know that truth firsthand. And I am especially grateful to my son, whose perspective provides valuable insight into mental illness and how it affects children. His humor, intelligence, and love have made my life immeasurably better. He is not a bad kid--he is an incredibly brave kid (and he just finished writing his first book! At age 14! It's about demigods from outer space).

But today, though I am grateful that so many people are speaking up and sharing their stories. I am also saddened at our inability as a society to act. People who have mental illness, including children, are "treated" in jail or left to die on the streets or by suicide. This is a national tragedy of epic and growing proportions. I feel that we have a moral obligation to care for our children, brothers, sisters, parents, friends, and colleagues who have mental illness.

I hope you will read my book. But more importantly, I hope that you will join me in speaking up for change. Please contact your representatives in  Congress. Join Treatment Before Tragedy. Participate in your local NAMI walks this fall. And share your stories. Their truth is powerful. Together, I know we can make a difference. In the words of one of my favorite poets, Robert Frost:

 

Only when love and need are one, 

And the work is play for mortal stakes

Is the deed every really done

For heaven and the future's sakes.

These are our children, and this is their--and our--future.

Best to you all!

Liza

P.S. If you do want to buy the book, please consider a local bookseller. Here are two of my favorites:

Iconoclast Books
www.iconoclastbooks.com
671 Sun Valley Rd W, Ketchum, ID 83340
(208) 726-1564

Rediscovered Books
www.rdbooks.org
180 N 8th St, Boise, ID 83702
(208) 376-4229

Commit or Complete?

Why we need to choose our words more carefully when we talk about suicide

credit: TreatmentbeforeTragedy.org

On August 12, 2014, as the tragic news of Robin Williams’s death spread like a contagion through my Twitter feed, I realized something: you could tell how old people were by the movie lines they quoted in response. For me, it was Dead Poet’s Society, that iconic struggle of life (and death), and the Walt Whitman line, “That the powerful play goes on, and you may contribute a verse.” Or a whole stanza, when you’re an epic figure like Robin Williams.

My next thought, though, was of David Foster Wallace. I took his 2008 suicide pretty hard. Foster Wallace was one of those authors with whom I had an intellectual affair of sorts—when I read Infinite Jest, I felt like he was speaking to me in a code that only he and I could understand. So of course, upon learning that Robin Williams’s heroic struggle with lifelong depression had ended, I thought of Foster Wallace’s description of why people who suffer from a choice-stealing brain disease sometimes end their own lives:

“The so-called ‘psychotically depressed’ person who tries to kill herself doesn’t do so out of quote ‘hopelessness’ or any abstract conviction that life’s assets and debits do not square. And surely not because death seems suddenly appealing. The person in whom Its invisible agony reaches a certain unendurable level will kill herself the same way a trapped person will eventually jump from the window of a burning high-rise.”

I felt the exact same sadness upon learning of Robin Williams’s untimely exit from this world that I would have felt if I had learned that his struggle with cancer or any other disease had ended. But not everyone saw it that way. If you didn’t read Matt Walsh’s tone-deaf diatribe describing suicide as a choice, don’t. But if you did, see how his words read when the word “depression” is replaced with “cancer,” and you’ll have some idea of how hard it still is to talk about mental illness.

Also, incidents like this give us an opportunity to talk about cancer, and we certainly should.  Only we shouldn’t turn the subject into a purely cold, clinical matter. “Chemical imbalances,” people say. “A man is cancerous because of his brain chemicals, and for no other reason.” 

No, we are more than our brains and bigger than our bodies. Cancer is a mental affliction, yes, but also spiritual. That isn’t to say that a cancerous person is evil or weak, just that his cancer is deeper and more profound than a simple matter of disproportioned brain chemicals. And before I’m accused of being someone who “doesn’t understand,” let me assure you that I have struggled with this my entire life.

Like Matt Walsh, like many people, I have had my own struggles with depression. David Foster Wallace’s description of suicide resonates with me so strongly because late one night, in the throes of despair at the end of my marriage, overwhelmed by a loss of faith, I thought I was at the top of a burning building, and I thought I would have to jump. In that moment of agony, I truly believed there was no other way, that the world would be a better place without me.

And in that moment, by chance or by grace, one of my children woke up and came to me, like an angel, and said, “I love you,” and cuddled in my arms, his head snuggled just below my chin, like he did as a baby. I’m probably remembering this quote wrong, but I think the Greek dramatist Sophocles said something like “Children are the anchors that hold a mother to life.” In that moment, anchored to life by my sweet child, I knew I could—and would—escape the burning building and live.

But unlike Matt Walsh, I do not begin to presume that my ability to survive serious thoughts of suicide was in any way due to something special about me. I’m not strong or brave or unselfish; I was lucky. And I had an incredibly happy childhood, which makes up for a whole host of ignominies later in life. Very few people in this world are as fortunate as I am, and I give thanks for what I have every single day.

Words have power. And words are our only way to move beyond the solipsistic existence of our own minds and into shared community with others. Yet the existential conundrum of life is that we are all, ultimately, alone. As Andrew Solomon noted in his poignant tribute to Williams, “The Crime of Loneliness,”

“A great hope gets crushed every time someone reminds us that happiness can be neither assumed nor earned; that we are all prisoners of our own flawed brains; that the ultimate aloneness in each of us is, finally, inviolable.” 

Which brings me to language, that mechanism of hope that sometimes allows us to escape the prison of our own minds. Here’s the thing: the word “commit” and the word “suicide” don’t belong together. They just don't.

In certain contexts—career, relationships, goals—the word “commit” has positive connotations. My friend Heidi Reeder’s book Commit to Win, for example, outlines strategies to succeed in work and life by harnessing the power of positive commitment. I think we would all agree that this kind of commitment—a choice to focus on the people and things that matter most to us—is good.

But in mental illness, the word “commit,” in both its active (e.g., “to commit suicide”) and passive (e.g., “to be committed to an institution”) forms, has damaging connotations that falsely convey a sense of choice where too often no meaningful choice exists. People don’t “commit” suicide. They die by suicide, or they complete suicide (too often after more than one attempt).

Dr. Thomas Joiner has made it his life’s work to understand why mental illness sometimes leads to death by suicide; he notes that the rarity of suicide notes suggests how profoundly alone and unable to communicate people who take their own lives feel at the end of their existence:

“To say that persons who die by suicide are lonely at the time of their deaths is a massive understatement. Loneliness, combined with alienation, isolation, rejection, and ostracism, is a better approximation. Still, it does not fully capture the suicidal person’s state of mind. In fact, I believe it is impossible to articulate the phenomenon, because it is so beyond ordinary experience. Notes are rare because most decedents feel alienated to the point that communication through a note seems pointless or does not occur to them at all." 

Much has been written about mental illness and stigma. I myself have said that “it’s time to talk about mental illness.” But as Dr. Joiner observes in his 2010 book, Myths about Suicide, “Talk about suicide is not cheap.” With suicide, the stakes are very real.

There are therapeutic treatments for mental illness, just like there are therapeutic treatments for cancer. But with both diseases, not everyone survives. Robin Williams’s death was a tragedy, but it also gave us an opportunity to speak up, to share our stories, and to demand better treatments, earlier interventions, and evidence-based care for brain disease. We need Treatment before Tragedy.

The words we use to describe suicide—and mental illness—matter. They shape our very understanding of the disease, and how we treat the people who have it, including ourselves and our loved ones.

As William Stafford, himself a venerable member of the Dead Poet’s Society, wrote (far better than I could, and with words I think Robin Williams would appreciate):

"And so I appeal to a voice, to something shadowy,
a remote important region in all who talk:
though we could fool each other, we should consider--
lest the parade of our mutual life get lost in the dark.

For it is important that awake people be awake,
or a breaking line may discourage them back to sleep;
the signals we give—yes or no, or maybe—
should be clear: the darkness around us is deep."