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.

---

[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.

5 Reasons I Wish We Would Stop Talking about "Recovery" for Serious Mental Illness

And the word I wish we would use instead

My heart hurts today. My friend Laura Pogliano has lost her 22-year old son Zac, who had paranoid schizophrenia. Both Laura and Zac were tireless and passionate advocates for ending the stigma of mental illness. Their story was featured in USA Today's "Cost of Not Caring" series, where Laura described herself as a "fortunate" mother--fortunate because despite personal bankruptcy, she had been able to obtain treatment that seemed to be working for her son. This tragic turn reminds all of us mothers just how fragile life is for our children who have serious mental illness. As a parent of a child with bipolar disorder, my worst nightmare is what happened to Laura and her son.

There's a popular quote floating around mental health advocacy circles: "Mental illness is not a choice. But recovery is." I know people will disagree with me, but today, I'm tired of that sentiment, and I wish we would retire the word "recovery." When local and national mental health policy is shaped by high-functioning consumers who have been able to manage their illnesses rather than by the sickest patients and their families, it's the equivalent of only allowing stage 1 cancer survivors to drive the narrative and take most of the funds. While their courage is admirable and their struggles are genuine, too often, we lose sight of those who are suffering the most. They become invisible to us, marginalized on the streets or in prison. Or they die young, like Zac.

I wish we would stop talking about recovery and replace it with a more useful, less stigmatizing word: hope.

Here are five reasons I wish we would stop using the word "recovery" for serious mental illness. 

1. Not everyone recovers. The word "recovery" has become central to mental healthcare, from the top down. In fact, the Substance Abuse and Mental Health Services Administration's stated mission is that "People recover." With serious mental illness, that's not true. People recover from head colds. They recover from chicken pox. They recover from situational depression. They even recover from trauma. But some diseases are lifelong. Like diabetes, or Parkinson's disease, or multiple sclerosis, serious mental illness is a lifelong, chronic health condition.
   
2. Recovery and its partner phrase, behavioral health, imply that mental illness is a choice. Mental illness is not a choice or a character flaw. The focus on "behavioral health" unintentionally stigmatizes the very people that SAMHSA is meant to help: those with serious mental illness.
   
3. The word "recovery" suggests that people need to return to a "normal" state, rather than embrace their differences. What does a person with bipolar disorder or autism need to "recover" from? When people realize they are not their diagnoses, they can start to find things that actually work to help them live successful and productive lives. That's hope, not recovery.
   
4. The concept of recovery increases stigma, both within and outside the mental health community. Again, if people recover, why aren't you recovering? It must be a choice you are making, or something you're doing wrong. Some people tell you the medications you take are preventing you from recovery. Others tell you that your choice to stop medication is preventing you from recovery. Who is right? Hope is a universal concept that embraces a wide range of possibilities. Recovery seems dependent on a prescribed set of treatments that may not work for everyone.
   
5. Recovery is an unrealistic standard for any chronic illness, including mental illness. We would never apply the blanket expectation of recovery to any other chronic illness or disability. With cancer and autoimmune disorders, we use the term "remission" to describe a life-threatening systemic illness that with luck and treatment has been stopped in its tracks. With other chronic illnesses like diabetes, we talk about managing the illness. But with mental illness, we expect people to "choose" recovery, even when they are experiencing psychosis, or when their disease steals their ability to make rational choices.

Behavioral health is an important concept for everyone. We should all focus on our behavioral health: on diet, exercise, mindfulness, good sleep habits. But behavioral health is not mental illness. Mental illness is physical illness. For people with serious mental illness, behavioral health alone will not "fix" or "cure" the chronic condition, and for us to expect otherwise is unrealistic and cruel. We need to focus on effective treatments, not inaccurate judgments about what we "believe" or "feel" mental illness is. It's a very real health challenge, with real and sometimes devastating consequences for those who live with it and their families. 

Let's keep talking about behavioral health for everyone. But let's stop talking about recovery for serious mental illness and start celebrating people whose brain disorders cause them to live with health challenges comparable to those experienced by cancer patients. The word we need, in the face of so much loss, is hope. Mental illness is not a choice. But hope is. Even in the face of tragedy, today I choose hope.

Two Years to Nowhere

Two Years After Newtown, Mental Health Still Matters, and Most People Still Don't Care

"On the first day of Christmas, my true love gave to me..."

This weekend, on the second anniversary of the Newtown shootings, I took my daughter to see her first performance of the Nutcracker. Unsure of the exact venue, we parked on the street and followed the hordes of blond girls dressed just like my daughter in velvet dresses with satin sashes. I have wanted to reenact this holiday tradition from my childhood with my own now 9-year old for many years. But this year was the first time we could actually go together. Two years ago, her brother was in an acute care psychiatric hospital, and I shared our painful story with the world. A year ago, she was with her father, who talked a judge into giving him full custody by arguing that the younger two children were not safe in a home with their brother. Mental illness affects more than  the individual: it affects the whole family.

This year, two years after Newtown, our family is stable, happy, spending the holiday season the way we imagine families in Hallmark cards spend it: decorating our tree, wrapping presents, drinking hot cocoa, and making up new lyrics to “The 12 Days of Christmas.” But we know how fragile, precious, and rare this gift of Christmas present is.

What changed for my family in the two years since Newtown? One word: treatment. Before Newtown, I was afraid to speak up and demand help for my son. After Newtown, in large part because I shared our family’s private tragedy, my son, unlike Adam Lanza, got the help he needed. A diagnosis of bipolar disorder does not “fix” all the challenges my son and our family still face: after years of maladaptive coping strategies, he—and we—are learning a new normal, where we ask for help when we need it. And we still struggle, as many families do, with access to care. But we have what so many other families still lack: hope.

In the immediate aftermath of Newtown, I felt tremendous optimism that people finally cared and understood about mental illness. Sadly, I was wrong. The simple changes—earlier interventions, more access to care, more support in the school system, day treatment crisis centers—have not materialized. We continue to blame parents—and children—for behavioral symptoms of brain disorders. Worst of all, we continue to sentence people to jail or relegate them to homelessness because of their illness.

Along with other mental health advocates, I’ve watched the responses to the tragic deaths of Michael Brown and Eric Garner with considerable sympathy. People with mental illness, no matter what their race, also face challenges with law enforcement officers, especially in cities where police lack Crisis Intervention Team training. Here is a partial list of people with documented mental illness who were killed by on-duty police officers in 2014:

Here's an idea! We could send an ambulance on mental
health calls, like Norway does. 

1. Keith Vidal had documented schizophrenia. When his family called 9-1-1 for help with a behavioral episode, the police shot and killed the 90-pound 18 year old. 
2. Parminder Singh Shergill, a U.S. Army veteran who suffered from PTSD, was shot and killed by police after his mother called and asked for medical help. He lunged at officers with a knife. 
3. James Boyd, a homeless man with mental illness, was shot and killed in a confrontation with Albuquerque police. 
4. Matthew Pollow had schizophrenia. He lunged at the police with a screwdriver and was shot and killed. 
5. A woman in Santa Clara called police to say she was suicidal. When she answered the door holding a baseball bat, they shot and killed her. 
6. Dontre Hamilton, who had schizophrenia, was shot and killed by Milwaukee police in a confrontation. 
7. David Latham, who likely had schizophrenia and had been off his medications for a few days, was shot and killed by Virginia police when his aunt called 911 to ask police to help him. 
8. Jason Harrison, who had schizophrenia, was killed when his mother called the Dallas police to ask for medical help for her son. 
9. Nick Davis, who had schizophrenia and bipolar disorder, was shot and killed by police when he swung at them with a crowbar. 
10. Rosendo Gino Rodriguez was killed by police in Midland, Texas when he retreated to his room during a welfare check initiated by his family. 
11. Michelle Cusseaux was shot and killed by Phoenix police who were tasked with taking her to a mental health facility on an emergency hold. 
12. Kajieme Powell, a St. Louis man with mental illness, charged police yelling “Shoot me now!” They did, just days after Michael Brown’s death in nearby Ferguson. 
13. Chelsea Fresh, who suffered from bipolar disorder, was shot and killed by police in Beaverton, Oregon. She was holding a rifle. 
14. Calvin Peters, a Brooklyn man who had bipolar disorder, was shot and killed after he stabbed a student in the face. 
15. Thomas Read was shot and killed in New Jersey when he came at police with a knife. He had schizophrenia and had been unable to get his medications because of a problem with his health insurance.

This list is not exhaustive: it’s hard to track how many people are killed by police each year and whether those killings are justified. And the problem works both ways. Just as people with mental illness are killed by police, law enforcement also faces threats: Mental Illness Policy.org has tracked 115 deaths of police officers since 2009 that can be attributed to people with untreated mental illness. 

I should stress here that people with serious mental illness are not likely to be more violent than people in the general population, unless they are untreated. Without treatment, the risk of violence to self and others rises. That has certainly been my experience with my own son. Once we had a correct diagnosis and medications that worked, the threats of harm to self and others stopped. I don’t believe that medication alone is the answer—talk therapy and occupational therapy are extremely important in helping my son to navigate a world that presents him with significant sensory challenges. But lithium changed everything for my son and my family.

I think often of the Newtown families, the pain of that first Christmas without loved ones, of gifts wrapped for children who would never open them, of holes left in hearts that will never fill. And I also think of Adam Lanza and his mother and wish for all our sakes that he could have gotten treatment before tragedy. That’s my wish for every family who struggles with the often overwhelming challenges of mental illness. But we can’t do it alone. We need the support of our friends and communities. We need society to stop blaming us and our children. But most importantly, we need access to care. Without treatment, two years after Newtown, for too many families, Christmas is a time of sorrow and loss and grief. 

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.

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."

Knock Knock, Who's There?

Law enforcement officers are first responders
for  mental illness.
Photo by leila haj-hassan, freeimages.com

When your child has a mental illness, too often it’s the police

Last night, I was abruptly awakened at 4:00 a.m. by the sound of my doorbell ringing. Confused with sleep, I struggled to pull on a pair of jeans as the doorbell rang again, followed by an insistent knocking.

“Who is there?” I said as I stumbled to the door.

“The police,” a firm male voice responded. “Open up please, ma’am.”

My heart froze. “Where’s my son?” I thought, panicked.

I slowly opened the door to see two police officers. “Can I help you?” I asked.

“Is that your car, ma’am?” the female officer asked, gesturing toward my grey Suzuki.

“Yes,” I replied.

“The door is open,” the male officer said. “Will you check inside and see if anything is missing?”

My heart started beating again. It wasn’t anything serious; my son had just forgotten to close the car door behind him, like he forgets so many things: dishes on the table, cupboard doors open, sometimes even the refrigerator or freezer gaping wide, sending my electric bill sky high.

My 14-year old son has bipolar disorder. For years, he experienced unpredictable, violent rages. The police have been frequent visitors to our modest suburban townhome. Sometimes they have taken him to the emergency room. Sometimes they have taken him to juvenile detention. Every time, my family has been afraid.

This morning, I read a poignant post on helicopter parenting of adult children with mental illness—one that I am afraid will be my experience in a few years. Karen Easter, a Tennessee mom-advocate, wrote this about  her son:

[O]n bad days, when it is apparent he hasn't been taking his meds, I have no other choice but to put on my helicopter mom hat.
In fact, I have never liked this hat.
Did I mention I really, really despise hats?
Hey, wait just a minute ... I should NOT have to be wearing this hat AT ALL!
But I wear it because right now this very minute, I must hover to keep him safe--only because the system has failed him and our family miserably. I don’t really want to wear this hat.

For so many parents of children with serious mental illness, this last week of August is a nail-biter as we wait to see whether Congress will do the right thing and pass Representative Tim Murphy’s proposed “Helping Families in Mental Health Crisis” Act. Here are some of the critical reforms that Representative Murphy’s bill provides:

Revising HIPAA Laws and Medicaid Reimbursements

Privacy laws in healthcare prevent parents from getting crucial information that they need to help their adult children in crisis. And the Medicaid IMD exclusion has directly caused an acute shortage of inpatient psychiatric beds for patients with mental illness who need treatment. Today, there are only 40,000 psychiatric beds available in the nation. If my son required longer term care, he would have to go hours away from my home. This is true for many families.

Providing Alternatives to Institutionalization through AOT

Assisted Outpatient Treatment (AOT)  is a proven alternative to keep people stable and productive in their communities. The opposition to Rep. Murphy’s bill has labeled this provision as “forced treatment.” It is not. AOT laws are already on the books in 44 of 50 states and “require mental health authorities to provide resources and oversight necessary so that high-risk individuals with serious mental illness may experience fewer incidents and can live in a less restrictive alternative to incarceration or involuntary hospitalization” 

A few weeks ago, I spoke with a young woman who opposed my views on AOT. She had been in a psychiatric hospital for more than a month and felt that the care she received was “horrible.”

“Have you been to jail?” I asked. She admitted that like many people who have mental illness, she had.

“Which did you prefer?” I asked.

“The hospital,” she responded without even hesitating. But she made a good point: our current in-patient hospitalization practices, while not as horrible as the psychiatric institutions of yore, could still use some serious makeovers in terms of both physical facilities and therapeutic practices. One of my friends with bipolar disorder has envisioned a therapeutic hospital that would feel more like a spa, where people could stabilize in safety while also continuing to work remotely or go to school—to do the things that give everyone’s life meaning and purpose. Similarly, AOT aims to keep people in their communities, not force them into institutions.

Restructuring SAMHSA funding

I have already expressed my frustrations with SAMHSA and how they fail to provide assistance to the most critically ill patients and their families.  Representative Murphy’s bill restores accountability by tying funding to evidence-based practices that actually help people with mental illness to manage their conditions and live productive, healthy lives. Far from discouraging innovation, as the opposition warns, this provision will actually encourage organizations to build program evaluation into their practice, providing data about what works—and what doesn’t—so that we can focus on helping people to make their lives better.

Let me give you an example from my own state. In an effort to save money, Idaho contracted with Optum to manage its Medicaid mental health care. Optum looked at one service, psychosocial rehabilitation, or PSR, and decided that it was overused and often not medically necessary, especially in children. 

PSR had historically been used as a “catch-all” for children with serious emotional disturbances or behavioral issues. The result of this abrupt PSR denial was that families suddenly found themselves without a service they felt was necessary to their children’s health.

What did the evidence say? Because there were never any requirements to track outcomes, the state merely logged hours and made reimbursements. It turns out that no one really knows what PSR is in Idaho, let alone whether it is effective. Every agency essentially acted independently, developing their own model in the absence of standards for care. Two researchers did find significant clinical improvements for kids on PSR. But they only looked at one of many models. 

Tying outcomes to funding would have provided much-needed data on whether PSR works in children. If the data had been positive, we might have an additional valuable tool to help children function better in the community, a tool we could share with other communities to improve everyone’s care.

Representative Murphy’s bill was forged after the tragedy of Newtown, which also sparked my own desire to advocate for my son. As I researched the myriad problems that plague our system for my forthcoming book, I repeatedly found the same tragic story: poverty, mental illness, and prison. America’s incarceration rates when compared to other so-called first world countries are quite literally off the charts, with more than 2.4 million people in prison. 

If ever there was a truly bipartisan cause, it’s mental health. Fixing our broken mental healthcare system promises to ameliorate so many of the other social ills that harm children, families, and communities. A new advocacy organization, Treatment Before Tragedy, is sharing stories of families like mine, whose children are suffering.  If you are a family member of someone who has mental illness, I encourage you to join this organization and to share your story on Twitter, using the hashtag #Tb4T.

And if you haven’t, please call your representative personally and ask him or her to cosponsor Representative Murphy’s bill. Right now, if your child is in mental health crisis, your only options are to call the police or to go to the emergency room. We can and must do better for our children and families. No family of a child with mental illness deserves that dreaded knock in the middle of the night.