Saturday, November 22, 2014

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.

Monday, November 3, 2014

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.

Thursday, October 23, 2014

The Third Week of October

Some Memories Never Fade

One evening just before sunset in the third week of October 2014, I walked down the hill from my new home to the soccer fields. The Boise foothills glowed rose and gold in autumn sun’s last light, and the manicured emerald fields rang with cheers and groans. My oldest son once played on these fields, in another life, before my divorce. I have since learned that memories can change.

The long lean years of dingy apartments, of rice served at every meal, of every phrase qualified with “if the good Lord’s willing and the creek don’t rise,” those years (God willing!) are over. To walk out of my home—our home—to see those soccer fields, those glowing foothills, to look back at the picture window, the piano, the wall of books (his and mine), was a dispensation, a manifestation of grace.

Twenty years ago, in the third week of October, my father died. He was 50.

I’m still sad about his death. With the removal of the bereavement exclusion in the DSM-5, the fact that I still tear up twenty years after losing my father to cancer might indicate I’m depressed. I’m not—I’m just sad. Sad to think of the grandchildren who never met him, the hikes we could have shared, the conversations about faith and life and books and science—his avocation—that would have kept us up late at night.

That’s one of the challenges facing modern psychiatry. What type of grief is normal? To me, it seems that psychiatry, in attempting to answer this question, has barely moved beyond augury or astrology. As I walked around the soccer field that evening, a bright copper coin stood out in sharp relief against the sidewalk. I stopped to retrieve it, certain (as I always am when I find pennies) that it was a sign. Our silly brains see patterns in the flight of birds, in sheep entrails, in spare change on sidewalks.

The year my father was diagnosed with cancer, I learned a German word that has stuck with me when all the other German words I learned in college have fled. Unheimlich. This cognate’s meaning can be easily guessed—heimlich for “like home” or “comfortable,” unheimlich for uncanny. It’s the discomfiting sense of being a stranger in a land that should feel familiar.

That’s how I always feel in the third week of October. We can be orphaned at any age: I was orphaned at 22, on the cusp of my adult life, not quite ready to put away childish things or to acknowledge the reality of death. As I thought of my father, the bright penny’s startling appearance banished the ghosts and brought back a sense of comfort, of belonging, of home.

Gazing at the soccer fields, clutching my copper token of the universe’s momentary good will, I was transported suddenly into a present-tense past. I see myself at nine, my daughter’s age, my hair in two braids, standing on the lawn outside our home in Pennsylvania. It’s my birthday, and I’m wearing a leather softball glove, still stiff with newness. My father stands across the way, a white ball in his hands. “Was it okay to get you this?” my father asks. “I wasn’t sure if you would like it. I mean, you’re a girl. I mean, a wonderful girl! You can be anything you want to be!”

My father loves sports—football, baseball, basketball. I’m his oldest child, and already, I’m more of a book girl than a baseball girl, which doesn’t seem to disappoint him in the least. His own father died when he was just seven years old, so he is always trying to make sure that everything is “okay,” that his performance as a father is meeting our needs and expectations, that we know we can give him honest feedback. 

Standing in the yard with him playing catch, I know, even as a child, that my father’s gift—what he himself wanted as a nine year old—is the best possible gift he can give me, even though I’m not particularly athletic. As the ball connects with my mitt, a satisfying thump, I feel the love my father has for me radiate up my arm and all through me.

And that present-tense moment, a father tossing a white softball to his nine-year old daughter years later on the soccer fields in Boise, Idaho, is still happening, and was always happening, and will happen forever.

Monday, October 6, 2014

Singing to End Stigma

This week, forget the ice bucket challenge and think karaoke!

My son has bipolar disorder. Note: he is not bipolar. He has a serious mental illness, which he prefers to define as a "mental difference." But he wants the same things any kid his age wants: friends, a chance to score a goal on the soccer field, good grades, top rankings in Halo. With the right treatments and supports, he’s been given a chance to reach those goals.

“If people meet me first and get to know me, then they find out later about the bipolar, it’s no big deal,” he told me when I asked him how stigma affected him personally. “But when they hear bipolar first, they think, ‘Oh no! He’s a bad kid!’ And I have to work that much harder, if I get a chance at all.”

In a series of “mom chats” with my friend Janine Francolini of the Flawless Foundation, I asked mental health advocate Ross Szabo, who manages his bipolar disorder successfully, what he would tell my son about living with mental illness. You can watch his response here. Ross stressed the importance of self-compassion. I think he’s right: above all else, people who struggle with mental illness (or as my son likes to call it, mental “differences,”), have to develop a lot of compassion for themselves, because they often don’t get compassion from others. And as his mother, I can attest to the fact that parents don’t get much compassion either: when your child is in a psychiatric hospital, no one brings you a casserole.

One depressing fact: even though anti-stigma campaigns have made people more aware that mental illness is a brain disease, those campaigns have thus-far failed to budge the stigma meter long term. I think that both stigma and the resultant discrimination against people who have mental illness are the direct consequences of our society’s inhumane decision to replace mental institutions with another, worse kind of institution: prison. Treating people who have mental illness by sending them to prison, or even to “mental health court,” reinforces the idea that mental illness is a choice or a character flaw. We would never treat people who had a cancer diagnosis by sending them to jail.

A few months ago, the ALS ice bucket challenge was all over my Facebook feed. I was challenged, and I refused to participate. Not because I’m afraid of a little cold water (I will neither confirm nor deny that I have occasionally enjoyed a post-hike au naturel dip in some of Idaho’s lovely and bracing alpine lakes). Not because I don’t think that ALS is a serious disease that deserves our attention, or that I shouldn’t personally contribute to the cause.
My book The Price of Silence about parenting a
child with mental illness is available at
independent bookstores like Iconoclast Books.

I didn’t contribute because you never see things like ice bucket challenges for mental illness, to fund treatment before tragedy. But this week, my kids and I decided to participate in the Children’s Mental Health Network Karaoke Challenge, issued by Linette Murphy, a fellow mom and advocate. I am fortunate to call Scott Bryant-Comstock, CHM Network director, a friend, and I have been honored to participate in a series of dialogues about HR 3717 and how we can fix our broken mental healthcare system.

I’m also planning to use every social media channel I can this week to join my friends in fighting stigma. “When it comes to mental health, silence is not golden.” This is the theme of a story-sharing, stigma-busting campaign led by the International Bipolar Foundation and other groups to fight the stigma that affects people who have mental illness. Starting Monday, October 6, use the hashtags #BustTheStigma and #SayItForward to share your stories of living with mental illness and working toward mental health. 
Because the Price of Silence is still far too high for children, families, and communities.

Wednesday, September 10, 2014

Little Blue Dress

When Cupid strikes a second time, you can wear any color you want

“Know, first, who you are, and then adorn yourself accordingly.”—Epictetus

Author’s note: This week is National Suicide Prevention Week, a time to focus our efforts on preventing the tragic deaths of more than 800,000 people around the world who die each year by suicide. Many of them have mental illness and lack effective treatments. This week, I am in New York City with my second husband (we married in June) to promote my book on children’s mental health, The Price of Silence: A Mom’s Perspective onMental Illness, from Hudson Street Press.

Once upon a time, I wrote a blog about thrift store wedding dresses and second chances. It became a book called Little White Dress: Women Explore the Myth and Meaning ofWedding Dresses. This book earned me, my 25 co-authors, and Mill Park Publishing a 2012 Bronze Ippy Award in Women’s Issues from the Independent Publishers Association of America. This post is a follow-up to that original post. It is also an expression of immense gratitude for the life I have today, and for the man who chose to share it with me and my children.

A few years ago, anticipating what would have been my sixteenth wedding anniversary were it not for my divorce, I wrote a nostalgic post about thrift store wedding dresses and second chances. My essay sparked a steady stream of wedding dress stories—some bitter, some sweet, some funny, some achingly sad, all revealing various aspects of a woman’s life and experiences with love. I was so touched by these stories that I thought, “Wouldn’t it be great if we could collect them in a book?”

So I called Elaine Ambrose, Midlife Cabernet blogger, owner of Mill Park Publishing, and a woman whom I think deserves the title of “Erma Bombeck Part II: The Sassier Sequel.”

“What if we do a book about wedding dresses?” I said.

“Sounds great!” she replied.

“And what if we put the book together in one day?” I was pressing my luck here—I knew it. But I had this vision, born of too many writing workshops where I left feeling unfulfilled and empty-handed, of creating a physical book in one sitting as tangible proof of my friends’ formidable writing talents

Any other publisher would have said, “Hell, no! There’s no way you can put a book together in one day.” 

But not Elaine. She didn’t even blink. “Sure,” she replied. “Let’s do it. I’ll supply the wine.”

And so Little White Dress: Women Explore the Myth and Meaning of Wedding Dresses, was compiled on August 8, 2011, three years after my divorce. It took a few more weeks to edit, lay the book out, and print physical copies. But start to finish, we completed the entire project in just a few weeks. Elaine hosted a swanky country club “book reception,” with proceeds benefiting Dress for Success, and I wore my original white wedding dress, a bit snug after four kids, but I could still zip it up if I only took shallow breaths.

I still remember when Elaine called to tell me the book had won a bronze 2012 Ippy Award in Women’s Issues. I was in the grocery store, looking for ketchup. “Do I still have to bag my own groceries?” I asked, so giddy with excitement that I announced the news to everyone on my aisle. I did still have to bag my own groceries. And I still do. But the medal looks really cool hanging on my office wall.

Now, of course, Elaine has surpassed our project with her own silver medal for Midlife Cabernet (the book version of her delightful blog), and I’m sure a gold is in her future.

And last June, I decided to put on a wedding dress again, this time, a blue one.

In August 2011, this is what I wrote about what that day, if it ever came, would mean to future me:
Will I ever wear another off-white dress on a day of goofy rituals? I can’t say right now that I see the attraction to that particular fairy tale. These days, I prefer the one where Cinderella breaks through the glass ceiling. But if I do decide again to don the costuming of love, I’m pretty certain of two things: first, I will love someone enough to wear a silly dress for him (this is no small amount of love), and second, I will buy the dress at a thrift store. Because every wedding dress deserves a second chance. 
At that time, I had officially resigned from the dating scene. Unpredictable, shallow men felt like a waste of time compared with my kids or my job. And besides, I was spending about half my time at IEP meetings, and the other half at the Ada County Juvenile Detention Facility or Intermountain Hospital, trying desperately to get help for a sweet little boy who sometimes flew unto uncontrollable violent rages.

Little did I know that the whole time I was crying in my cubicle, wondering how I would take care of my son and my other children, I was actually working right next to the person who would be my future partner in crime, Ed Pack, a red-headed Woodpecker who would promise to aid and abet me in a new set of life adventures (yes, that’s a Tom Robbins reference right there, folks).

I guess in hindsight, I should have known I had a thing for Ed when I offered to drive him to his colonoscopy in October 2011. I thought I was just being a nice boss—I was Jack Donaghy picking up Liz Lemon when she had her root canal on Valentine’s Day. The nurse called me “Mrs. Pack” that afternoon, and I didn’t correct her—maybe her comments got us both thinking.

Since we worked together, a romantic relationship wasn’t possible. But we built a solid friendship, sharing hiking stories and swapping books. Several plot twists later, I was working someplace else, and Mr. Pack called me up asked me out for a beer. It was the first of several—okay, four—dates before I couldn’t keep my hands off of him any longer. Yes, he really is that cute! 

And yes, it is no small amount of love that led me to a beach in Surf City, New Jersey, to wear a stunning light blue silk charmeuse hand beaded dress (new with tags) that I bought at, you guessed it, the Idaho Youth Ranch Thrift Store for $15. It’s my second-best thrift store find ever. The first was a 1925 Model M Steinway piano, in case you are wondering.

I wrote a bluegrass song for Ed and played it on the iPad. He wrote a poem for me, describing all the adventures we had shared, from backpacking the Washington Coast (“embrace the mud!”) to turning off our cell phones the night my “I Am Adam Lanza’s Mother” post went viral. My kids fought to read us our vows (we had “officially” tied the knot a few days before at City Hall). We took silly beach selfies and watched my younger two play in the waves. I wasn’t too worried about my dress getting wet, because as I mentioned, it was $15. My new sister-in-law provided an elegant touch with peach-colored rose bouquets for my daughter and me, and boutonniers for the boys.

It cannot have been an easy decision for Ed to give up a comfortable solitary existence for the hustle-bustle of my busy life. Similarly, it was very hard for me to develop enough trust in a man to tie the knot again. We both had to be sure we were in this for the long-haul. Everyone has baggage at our stage in life; you just want to be with someone who carries his or her own.

This week, I’m profoundly grateful for that god of second chances, and for a partner who inspires me, supports me, challenges me, and excites me about the possibilities of life. His overarching credo is a sense of wonder, and we share profound gratitude for “all things bright and beautiful, all creatures great and small.” I’m sure we’ll face challenges—all couples do. But I feel confident in our combined ability to weather storms and marvel at sunrises and sunsets—together.

Thursday, August 28, 2014

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!


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

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

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

Thursday, August 14, 2014

Commit or Complete?

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

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."