Stop Profiting from Pain

Walmart’s suicide costume is an affront to decency and morality

My son at age four

“Why do you tear me?
Is there no pity left in any soul?” 

Dante’s Inferno Canto VIII, John Ciardi trans.

I’ll never forget the first time my child talked about suicide. He was four years old, sniffling and shivering after a several-hour fit of thrashing, incoherent rage. As I rubbed his white-down hair and cuddled him, he said, “Mom, I don’t want to be anymore. I just want to be a zero.”

Nine years later, when I finally learned my son’s diagnosis, bipolar disorder, after years of specialists, hospitals, tests, medications, juvenile detention, and ongoing suicidal ideation, I was relieved. I knew people who lived with this illness and managed to have successful, happy lives. In fact, one of my closest friends from childhood, diagnosed with bipolar disorder in college, had married a wonderful man, raised four children, worked as a librarian and historian, and was writing her sixth novel.

Many of the 10 million people[i] in America who are diagnosed with severe mental illness can live healthy, happy, productive lives. But instead of celebrating their bravery, our society stigmatizes their illness by mocking it in horribly offensive ways.

There’s no time of year mental health advocates dread more than Halloween.

Every single year, it’s the same thing. Mental illness becomes the punchline of a joke, or the theme of a horror attraction. This year, Knott’s Berry Farm and Six Flags did the right thing, shutting down their horrific asylum-themed virtual reality attractions when advocates expressed justified outrage. A representative from Six Flags explained the company’s decision to me in an email: “This is a good lesson for us all about perpetuating stereotypes, and we apologize to anyone that we may have offended.”

This is a lesson that Walmart, the nation’s largest retailer, desperately needs to learn. A picture of a “razor blade suicide scar wound latex costume make up” (I won’t link to it, because it is a real trigger) is the latest and most egregious example of the ongoing battles people with mental illness and their loved ones must face to educate the public about the reality of mental health conditions.

Imagine if I told you that my child had an incurable illness with a risk of death as high as 20% [ii] If I told you that the illness in question was cancer, you’d be bringing my family casseroles, organizing community bake sales, and demanding that your legislators provide more funding for research and treatments. 

You’d be outraged by my inability to access quality medical care for my child. And you would be furiously calling for a boycott if a major retailer released a Halloween costume called “bald head cancer patient latex costume make up.”

But when I tell you my child’s illness is bipolar disorder, you back away. The risks and challenges are the same (I know—my father died from cancer when I was in college). But when I and other advocates express our outrage about suicide costumes and asylum-themed attractions, you tell us, “Stop being so politically correct,” or “Can’t you just take a joke?”

No, I can’t just take a joke. To those who don’t understand why this is all so wrong, I say in all sincerity, I’m glad you don’t. I am glad that you have never lost a child, or a parent, or a spouse, or a sister or brother or close friend to a choice-stealing brain disease. Because the pain of that loss never heals.

And I’m glad that you have never had to walk through the valley of the shadow of death, to come out the other side a survivor, but still struggling in a society that thinks your illness is “a joke.”

Our pain—and our loved ones’ pain—should never be used for entertainment or profit. If you think that I am just too thin-skinned—that I can’t take a joke—I have a Halloween costume idea for you. Go as yourself. You scare me.

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[i] Serious Mental Illness (SMI) Among U.S. Adults. National Institute of Mental Health. Retrieved from https://www.nimh.nih.gov/health/statistics/prevalence/serious-mental-illness-smi-among-us-adults.shtml

[ii] Pompili, M., Gonda, X., Serafini, G., Innamorati, M., Sher, L., Amore, M., ... & Girardi, P. (2013). Epidemiology of suicide in bipolar disorders: a systematic review of the literature. Bipolar disorders, 15(5), 457-490.

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.

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."