Same Old Stigma

Brian Wilson’s Biopic Shows Little Love or Mercy for Psychiatry

As the mother of a teenager who has bipolar disorder and a mile-wide creative streak, I was pretty excited to see the new Beach Boys biopic, Love and Mercy.  Composer and musician Brian Wilson has been completely and heroically transparent about his struggles with mental illness. Diagnosed with schizoaffective disorder, Wilson works tirelessly to promote an end to stigma through creative projects like the SMiLE sessions.  

But sadly, the movie was not at all what I expected. As an all-too-familiar modern fairy tale of the evil psychologist overmedicating and imprisoning a creative genius, Love and Mercy contributes to the merciless stigma that surrounds mental illness. Most stories have a beginning, a middle, and an end. Love and Mercy, with its deliberately framed stories of Brian Wilson’s success and subsequent mental illness, oversimplifies Wilson’s journey, pitting Eugene Landy (note: Landy is not a psychiatrist) against the fairy princess Cadillac saleswoman who becomes Wilson’s wife. The middle of the story, where Landy coaxed Wilson from three years in bed and a 150 pound weight gain 
to regain some semblance of his creative life and artistic promise, is only alluded to in the film, and the post-Landy period is a mere blurb as the end credits roll. 

Yes, Landy was a bad guy. Love and Mercy’s Paul Giamatti does a brilliant job at showing Landy’s failures, but the fact that the story is true does not make it any less damaging, at a time when the profession of psychiatry is desperate to attract talented physicians in the face of a growing public health crisis. Worse, it's not the whole truth: While what Eugene Landy did to Brian Wilson was truly horrible, Brian Wilson's life before Landy was arguably worse, which is certainly not a justification, but it does show just how awful life can be for people with serious mental illness.  

For the many thousands of children and adults who are in prison, or live homeless on the streets, a mental health professional can be a guide on the path to help and hope. Contrary to myriad negative media portrayals of psychiatrists, most mental health professionals are dedicated to improving their patients’ lives. That has certainly been my son's experience. Yet a 2014 study concluded that “medical students enter medical school with distinctly negative attitudes toward a career in psychiatry compared with other specialties,” which explains why only three percent choose to specialize in psychiatry each year. 

Love and Mercy is just the most recent example of an unbalanced cinematic portrayal of mental healthcare professionals, what Sharon Packer has termed “cinema’s sinister psychiatrists.”  In a study of mainstream movies, Wedding and Neimic (2014) found that for every balanced portrayal (Antwone Fisher, Ordinary People), there were four times as many unbalanced portrayals (What About Bob, Silence of the Lambs, One Flew Over the Cuckoo’s Nest, etc.) . 

The whole Love and Mercy story is this: Brian Wilson regained his life because of his family, his mental healthcare providers, and his own desire to seek recovery. As he told Ability Magazine in a 2014 interview, "Yes, I’ve been seeing a psychiatrist once a week for 12 years now, and he’s become a really close friend of mine. We talk and he helps me out.”   He also takes medication to manage his condition 

I'm not suggesting that Eugene Landy’s treatment of Brian Wilson was anything but unethical and immoral. It's just not the whole story. For every bad mental health professional like Landy, there are many more good mental health professionals, like the UCLA doctors who correctly diagnosed Wilson, or his current psychiatrist. All I’m asking is that Hollywood tell that story—the story where Wilson is correctly diagnosed, finds the right treatments and supports, and lives the life he deserves.

Thoughts from a 40-Something Mom to All the 30-Something Moms who are Freaking Out about Internet Oversharing

Thou shalt not write about thy children online.
Photo courtesy of iceviking, www.freeimages.com

In 1994, when I was a senior in college, I searched the World Wide Web for the very first time. I still remember that Mosaic query: surfing conditions in Australia, a half a world away from Provo, Utah. The answer? A full report, including weather forecast, tides, and wave conditions. In that moment, I felt like I had won the Golden Ticket to Willy Wonka’s Knowledge Factory. This will change everything, I thought. I never once thought about trolls.

In 1994, you were ten years old. No one was thinking about what the Internet would mean for ten year olds.

In 1996, when I was a graduate student at UCLA, teaching assistants faced a daunting new requirement: virtual office hours.  The concept was so mysterious and misunderstood that some of my fellow students actually organized labor protests. But as a woman expecting her first child, I saw instead the potential to work from anywhere, which at the time seemed like an overwhelming positive. Maybe, with the help of a computer and a dial up modem, a mother could work from home, I thought.

In 1996, you were 12 years old. You were probably one of the 75 percent of public school students who were using the Internet for middle school research projects that year. In 20 years, working from home—or anywhere else, for that matter—would be your normal.

In 2001, I was a young work-at-home mother playing around with coding basic html websites, and a fleeting thought passed my mind: what if I could create a website to share pictures and updates of my two beautiful boys with our family and friends? A book editing project distracted me, though the idea never quite left my mind.

In 2001, you were 18 and headed to a very different college experience than the one I had a decade earlier.  In fact, the American Psychiatric Association reported that in 2001, one in ten college students was addicted to the Internet. A researcher explained the findings as follows:  "The sense of security afforded by the anonymity of the Internet provides some students with less risky opportunities for developing virtual relationships." (Ah, that sense of anonymity!)

In 2007, I joined Facebook so I could play Scrabble online with my siblings. I quickly realized that it was the perfect platform for that shelved idea of sharing pictures and updates of my now four beautiful children. I never once thought about privacy. Why would anyone other than people I knew and trusted want to look at my Facebook page? I also created my blog, The Anarchist Soccer Mom. I loved the idea of an anonymous forum where I could be candid about the challenges (and joys) of parenting—and those challenges were becoming increasingly hard as my second son failed to respond to treatments for his erratic behaviors, which we would learn (much later) were caused by his bipolar disorder. Did I worry that people would know it was me? Of course not. No one—then or now—reads your blog.

In 2007, you were 24, transitioning to an adulthood that was shaped by unlimited access to all kinds of information. Maybe you had just bought your first iPhone, a device that transformed not only the way we access and share information, but refashioned our entire culture. Your adult life was shaped by a knowledge of this “revolutionary and magical” tool—the all-knowing computer in your purse. Before you had children, you had time to experience both the wonder and the terror of this new constant connection to all of humanity’s combined wisdom and ignorance.

40-something moms like me did not have that same luxury. Our children were young—or just being born—when all this wonderful and terrifying new technology was unleashed on us. In the 1980s, parents proudly carried wallet-sized print photos of their children. In the late 2000s, we started posting pictures, by the thousands, of our children online. We sincerely thought that the audience for those Facebook albums was the same as the audience for our parents’ wallet photos.

In 2012, when you had young children of your own, you knew better. You spent your early adult years watching people do stupid things and go viral. You experienced, either personally or vicariously, the extreme public shaming that only the Internet can facilitate. And you didn’t want your children to experience that level of public shame, with good reason. Internet bullying is awful, pervasive, and sometimes even fatal. 

So you created a new word to describe your criticism of the 40-something moms who were constantly posting about their kids: oversharenting. And you created a new commandment of mommy righteousness: “Thou shalt not write about thy children online.”

In 2012, in a gut wrenching intersection of a personal tragedy with a very public one, I shared a painful story about my own family on my anonymous blog. Then, after a lengthy conversation with a close personal friend, I decided to allow him to republish it, with my name attached. My revelation that my son had mental illness and we didn’t know how to help him has become Exhibit A in more than one essay about parental oversharing. For example, in 2013, Phoebe Maltz Bovy described my essay, “I Am Adam Lanza’s Mother,” as “the most outlandish version of a popular genre: parental overshare.”

In the aftermath of my viral blog post, I thought long and hard about my children’s privacy, and I made some pretty significant changes to the way I post things about my children on social media. I don’t ever use their names now. I think carefully about the content of any message concerning them, and I use privacy settings to limit access to people who can see what I post. Although I love Instagram, I try to make sure my kids’ faces are not visible in the pictures I share there.

But I absolutely refuse to stop talking about my family’s struggles with mental illness. In the case of mental illness, or any illness, advocacy trumps privacy.

Every parent writer struggles with how to talk about his or her children. Emily Bazelon presciently took on this topic in 2008. Wondering whether her own revelations about her children’s lives were violating their privacy, she asked, “Should we all close our laptops once our kids learn to talk?”

In response to her question, one honest blogger told her that he “mostly saw my hand-wringing over the ethics of writing about my kids as the result of ‘the same narcissistic impulse that causes us to write about our families in the first place. Because most people don't care what we write.’” 

This is a fact. If you write about your kids, or post their adorable pictures on social media, most people won’t read what you write. And your intended audience—real-life friends and family—are likely to appreciate your posts and feel more connected to you. I don’t see how that’s any more harmful to your children and their privacy than an annual holiday letter, and those have been around for a while.

But I also understand the privacy advocates who worry about what happens if people do in fact read what you write. Quite a few people read what I wrote about my son on December 14, 2012. More than four million, in fact.

My chief complaint with people who use me as an example of oversharing is quite simple: they all contend that what I wrote about my son was damaging to him or his future.

And that’s not even close to true.

I wish that Abby Phillip of the Washington Post had actually reached out to me to discuss the consequences of what she calls “oversharenting” when she quoted my blog. In our case, sharing our story had more positive than negative outcomes. Because I spoke up, my son got effective treatment and is now back in a mainstream school with friends who are totally fine with his bipolar disorder. In fact, they—and I—admire his self-advocacy and think he is brave for speaking out and sharing his story. We were also able to connect to an amazing community of mental health advocates. No one has ever approached us in the grocery store and said, “I know who you are. You’re that mom and kid who talked about mental illness after Newtown. You are horrible people.” It doesn’t work that way.

Google “oversharing child cancer” and see if you can find criticism of mothers who post about their children who have cancer on social media. (I couldn’t). Why was my alleged oversharing potentially damaging to my son’s future? Because we should be ashamed of his illness? Or because the writers who criticize me are ignorant about mental illness?

Would you like to know what is actually damaging to my son and his future?

1. The appalling lack of access to mental health care for children and families.
   
2. Our society’s decision to send children and adults with mental illness to prison.
   
3. The stigma we perpetuate when we respond sympathetically to a mom who writes about her child’s struggle with cancer but cry “oversharing!” when a mom talks about her child’s struggle with bipolar disorder.

These struggles—cancer and mental illness—are only different because the second mom will have tremendous difficulty both in getting people to care and in getting access to care.

Even Hanna Rosin, one of my most vocal critics after my blog post went viral, finally got this last point after she researched and wrote a moving piece on Kelli Stapleton, who will spend ten years in prison after a failed attempt to kill herself and her then 12-year old daughter, who has autism. 

When I suggested on Twitter that Rosin’s thinking had evolved on the subject of parents who advocate for their children with mental illness, she responded, “For sure. I really didn’t get it until I read your book and talked to Kelli.”

Now, in 2015, I share the most important and relevant portions of my family’s story, with my children’s permission, in every place I can.

And this is my heartfelt request to you, 30-something moms: keep sharing, especially if your child has an illness that can benefit from awareness and advocacy. Parents of special needs children actually rely on Facebook for much-needed support. You never know when sharing your experiences might change someone's heart and help to heal a mind.

People with Mental Illness Should Get What They Deserve

What if we treated cancer like we treat serious mental illness?

And what they—and we--deserve is treatment before tragedy.

You’re sitting in your family doctor’s office with your child, waiting. Your child fidgets, trying not to bite his fingernails. Your stomach is tight with worry, and you can’t meet each other’s eyes.

“Do you think it’s serious?” your baby finally asks. “I’m trying, Mom. I’m really trying.”

The door opens. Instead of the expected reassuring doctor in a white coat, you see a police officer, holding out a pair of shiny steel handcuffs.

“I’m sorry to tell you this,” the police officer says. “But your child has leukemia. We are going to need to take him into custody.”

What if we treated cancer like we treat serious mental illness?

Like many people who become mental health advocates, I arrived in this role entirely by accident. When my second son’s increasingly erratic and even dangerous behavior was finally diagnosed as bipolar disorder, he had already been in juvenile detention four times, and he had three stays in an acute care mental hospital. He was only 13 years old.

I did not know how to help him then. But I did know one thing for sure: my son was not a bad kid. He had behavioral symptoms of a brain disorder that had been with him since birth.

As a result of those behavioral symptoms, my son and many other children are sent to jail.

As I fought for justice for my own child, I learned that we were not alone in our struggle. All across America, children and adults with serious mental illness were being sent to jail because of their illness.

What if we treated cancer like we treat serious mental illness?

Treated, my son is just like anyone else. And yet when a child who brought a gun to school in Montana was diagnosed with bipolar disorder and treated, he was denied re-entry to the public education system. This child is likely to join hundreds of thousands of other children with serious emotional disturbance diagnoses who have ended up in the school-to-prison pipeline.

Do you think that 12-year olds with serious mental illness should be tried as adults instead of receiving treatment? That is exactly what is happening right now in Wisconsin with the Slenderman case.

Do you think that people who clearly committed their "crimes" while in the throes of psychosis should be executed? In our society, we’ve practically made that an expectation.

The way we “manage” serious mental illness is both expensive and immoral. So why do we keep sending sick people to jail instead of providing them with life-changing treatment?

I’ve come to an uncomfortable conclusion about how our society continues to ignore the obvious problem of serious mental illness. At some level, the fact is that we think people with serious mental illness deserve to go to jail. We tell ourselves that they deserve solitary confinement. They deserve homelessness. They deserve to be shot and killed by police. And because they are getting what we think they deserve, it's okay for us to turn away.

I can’t help but come to this conclusion as states everywhere (including mine) slash their mental healthcare budgets and services while leaving law enforcement and the criminal justice system to clean up the awful mess.

How do you stigmatize a medical condition? Make it a crime.

I’m ashamed—not of my son and the millions of people like him who are courageously living the best lives they can despite significant challenges. I’m ashamed of the rest of us, who tell ourselves that “those people” got what they deserved. We don’t want those “weird kids” in our children’s classrooms. We don’t accept that with the right supports, people can manage their diagnoses and live successful, productive lives in their communities. For those who cannot meet this worthy goal because their illness is too severe, we do not provide quality medical care, preferring instead the cold, harsh reality of a jail cell and solitary confinement.

At some level, we are all accountable for our failure to extend compassion and care to the sickest among us. We are all Adam Lanza’s mother, unable to acknowledge that our sons and daughters need help, not blame and castigation.

To everyone reading this who would send a sick child to jail: shame on you,

To everyone reading this who lives in fear and ignorance of your brave friends and neighbors battling to live a “normal” life: shame on you.

We can do better. We must do better. Our children are depending on us as a society to provide treatment before tragedy. People with mental illness should finally get what they deserve: compassion, admiration, support, and hope.

Maybe We All Need an Intervention

Dr. Phil’s #NickGordonIntervention highlights everything that’s wrong with how we view mental illness

I have to confess my shocking ignorance of popular culture: until I read this HuffPost article from Flawless Foundation director Janine Francolini calling out popular talk show host Dr. Phil, I had no idea who Nick Gordon was. And it doesn’t really matter who Nick Gordon is. What matters is the shocking and exploitative way a young man in mental health crisis was treated on national television, by a man who has tremendous power to shape public opinion about mental illness. 

I also have to confess that I have never seen Dr. Phil’s show, so I have not watched the infamous so-called “intervention.” But a friend of mine whose child was in crisis reached out to him seeking help for her out-of-control son. What she got instead was more of the same “shame and blame” that makes it so hard to parents of children who have mental illness to reach out and get the help they and their families desperately need. In one video clip I did see, my mom friend laughed nervously at her son’s explosive behavior. Dr. Phil chastised her, telling her that her cavalier attitude was contributing to her child’s problems. Newsflash, Dr. Phil: we laugh when our children lash out because we’re trying not to cry. And our children’s mental illness is not “our fault,” any more than a child’s cancer is the parents’ fault.

Dr. Phil McGraw describes himself on his website as “perhaps the most well-known mental health professional in the world.”  Since even I, a television-eschewing person who once thought that Anderson Cooper was a financial services firm, know who Dr. Phil is, I’d say that statement is quite probably true. I wish that Dr. Allen Frances or Dr. Jeffrey Lieberman or Dr. Paul Summergrad, all of whom are actual psychiatrists (unlike McGraw, whose Ph.D. is in clinical psychology) were the world's best known mental health professionals. The fact that these brilliant practitioners don’t have their own popular television talk shows speaks volumes about the problems with mental healthcare in America. As The Daily Beast’s Kevin Fallon aptly observed about McGraw’s show, “Such a crudely manufactured look at someone else’s pain is numbing where it is intended to be affecting.” 

Numbing. That is exactly the problem with mental health advocacy today. After Sandy Hook, the general public has become so numb to the horrific pain that people like Nick Gordon (and so many others) are experiencing that things like school shootings barely register anymore. When mental illness is nothing more than a spectacle for our entertainment, we become desensitized. We stop caring for those who need our care the most.

Maybe it’s time for society to have a collective intervention about the way we treat mental illness. Stop criminalizing people who are sick. Stop making suffering people into spectacles. Stop treating mental health differently than physical health.  Dr. Phil has famously said, “You either get it or you don’t.” I’m afraid when it comes to mental health and stigma, America’s best known mental health professional just does not get it. 

A Smoothie Won't Save My Child

Smoothies are undoubtedly delicious. But they don't cure
mental illness. Photo by Richard Dudley, freeimages.com

Why We Need Substantive Mental Health Reform Now

On Wednesday, February 11, 2015, I tuned in to C-SPAN to watch Representative Tim Murphy and the House Oversight and Investigations SubCommittee address concerns about a lack of leadership in mental health. The hearing was convened in response to a disturbing and disappointing report from the GAO that exposed the lack of care provided to people with serious mental illness. In her testimony, SAMHSA director Pamela Hyde, an attorney, essentially admitted that she doesn’t believe serious mental illness exists, but rather that people move in and out of illness and recovery.

I’m not sure what the job qualifications are for someone who heads up a multi-billion dollar organization tasked with coordinating care for people with mental illness. But I’m pretty sure one of them should be actually believing that mental illness exists. What if the head of the Department of Health and Human Services was an antivaxxer whose response to the Disneyland measles outbreak was to tell parents to exercise their free choice and take their kids to measles parties? Would we let that person keep her job? To me, this analogy describes Ms. Hyde’s dangerous position on mental illness, or as she prefers to call it, “behavioral health.”

Make no mistake: we’re in a public health crisis with mental illness, one that is far more serious than the measles outbreak. We need our leaders to acknowledge the scope of this crisis and to take decisive action, now.

That same morning, as I watched the hearing, I received a desperate plea by email. The author has given me permission to share this story with you, though I will not share her name, because this is an ongoing situation. But her story puts a human face on the GAO report and the magnitude of the health crisis that parents of children with mental illness are experiencing.

I hope that Pamela Hyde and all the people who think that mental illness doesn't exist read this desperate parent's plea. I hope Ms. Hyde starts to understand how badly our mental healthcare system has failed children, families, and communities. And then I hope she drinks a smoothie, one of SAMHSA's recommended treatments for behavioral health—and quietly resigns.

A Mother's Story

This is so hard for me. I had hoped and prayed that my daughter’s illness could be handled in private, and I fiercely protected her privacy. I’ve made up all kinds of stories trying to cover up where she is and what she is doing. When something did come out publicly, I put a spin on it because I was worried about how stigma would affect her.

But now her illness has caused her to end up missing for nearly
five days. So now I must tell you what it’s like to live this nightmare every day.

And I want all of you, ESPECIALLY those of you who think you know exactly what you would do if you were me, to SHUT UP AND LISTEN TO ME!

Just shut up NOW! 

Now you may be wondering how we got here. Well, my daughter has been struggling for a long time. While her diagnosis, signs and symptoms as well as the details regarding her disappearance aren’t something  I will share, I will share the following: 

• Self-directed treatments. FAIL. 
• Forced hospitalizations. FAIL. 
• Voluntary hospitalizations. FAIL
• Conventional Treatment. Alternative Treatment. FAIL. FAIL.
• No meds. Too many meds. Right amount of meds. FAIL FAIL FAIL
• FAIL.

I let her go. I hung on. I told her what to do. I backed off. 

I got into her business. I gave her privacy.

I surrounded her with loved ones. I left her alone. 

I attached. I detached.

I encouraged her to get a job. I encouraged her to go on disability.

I went to work to keep myself occupied and give structure to my life, and then I had to quit my job in order to accommodate her illness. 

I spent every dime I had in the bank.  

I researched every illness that could induce such behavior. I took her to specialists.
I was even schooled on boundaries by her and her therapist. I was told that I needed to let HER decide everything. 

Did you know that a person in a state of full-blown psychosis gets to have a say in their treatment?

And did you know that an adult with severe mental illness can exclude everyone, including their caregivers from having access to information?

We were told that the only thing that would work was for her to be admitted to a full time residential facility. However, due to the public facility being booked and our inability to afford the expensive price tag for private care, we had no options except what our insurance would pay. So I confidently looked to our insurance company and trusted that they would pay for her recommended care. 

FAIL. Even though our coverage offers residential treatment, they only approve two to three days at a time. You get the authorization usually at the end of the third day. They normally decline and you have to appeal. And no matter what the doctor recommends, some pencil pushing bureaucrats at the insurance company get to decide whether or not your child is doing better and will approve or deny based on their decision, not the doctor’s. 

Offering residential looks good in the employee handbook, but doesn’t mean much when they can wiggle out of it when they don’t want to pay.

My daughter was doing quite well in her program until they refused to pay after two weeks. 

I contacted dozens of therapeutic communities, farms, and other residential settings from across the country. But the cost of care averaged $10,000 per month. I don’t have that kind of money. 
And all those famous programs you read about, you know, the ones with the slick ads? Try $2,000 per DAY! And they don’t take insurance.

But even if we could afford it, these care facilities won’t take my daughter if she doesn’t want to be there.
And I could NOT make her. I considered conservatorship, but the private facility where she was going would not accept her with it. Like many private facilities, they will only accept a patient who is going there willingly.  

Her so-called "rights" as a patient with mental illness assure her the opportunity to even live homeless if she chooses, no matter how sick she is. Hey, it’s her "choice"!

So last September, with no other options available, I brought her home. 

I hoped and prayed that things were going to continue to get better for her. I watched for signs. Then last week, she started showing signs of decompensation. I had started the process of getting her back to the doctor when it all came crashing down. 

And then she took off for five days. Today she is back safe and in a hospital, but what will happen next is anyone’s guess.

The bottom line is that like many people with severe mental illness, my daughter needs full-time,and if necessary, court ordered residential medical care. You can love your child, but the family isn’t enough when they need constant supervision. And you can allow them certain freedoms, but when they are too ill to make decisions, you need support in forcing them to get care.

I believe full time supervision would have prevented this downturn.

And as much as I believe that Assisted Outpatient Treatment needs to be an option for people with mental illness who are able to remain in their communities, I don’t think in her case that it would work. I was already told that a first request for it would more than likely denied, especially since she had recently agreed to go to therapy and follow protocol. 

My daughter is a highly gifted young woman with a world of opportunities waiting for her, but sadly, thanks to this mental illness, she is now disabled.

For years I have tried to figure out what went wrong. I have analyzed nearly every interaction and I cannot figure it all out. 

And I can sit here all day, with all the other caregivers who live this nightmare daily and blame myself and try to figure out what I could have done differently.

But I can’t figure it out.

I do know that I have loved this girl from the moment of conception, and I cannot fully express to you how bad my heart hurts over this.

But I just can’t save her. I really tried. Our whole family did. 

But nothing works except residential care. 

And I’m hoping that we can access that care for her before it’s too late.

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. 

Sins of the Mother

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

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

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

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

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

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

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

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

So was Adam Lanza.

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

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

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

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

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

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

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

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

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

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

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

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

Dear Claire Dunphy

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

I'm going with Awesomeland.

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

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

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

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

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

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

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

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

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

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

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

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

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