Saturday, July 26, 2014

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.



Thursday, July 24, 2014

Pioneer Day

Celebrating my roots by letting go

My Pioneer Day outfit, circa 1978
On July 24, 1847 (as every young Mormon child knows), Brigham Young and an advance party of brave pioneers entered the Salt Lake Valley in what would someday (once the Mormons officially renounced polygamy) become the state of Utah. “This is the right place,” the prophet declared, evidently unaware that the California coast was just a few mountain ranges away. The Mormons, my people, exiled from their homes in Nauvoo, would build a new Zion in the shadow of the Wasatch Mountains and celebrate every Pioneer Day with picnics and parades.

This year on Pioneer Day, I sent a two-page letter by certified mail, return receipt requested, to my Mormon bishop, a man I have never met, requesting that he remove my name from the church records. Elaborating on a template I found here, I wrote:
I am taking this formal step as a direct result of your (not my) church’s decision to excommunicate Kate Kelly. A church that cannot allow good women to ask legitimate questions without fear is not the place for me. I am aware that according to church doctrine this cancels all blessings, baptisms, ordinations, promises, covenants, and my hope of exaltation in the Mormon celestial kingdom, and I have made my decision with that consideration well in mind. The Mormon version of heaven is not something I could ever look forward to as a woman. Please do not have anyone from the church contact me to try to change my mind.
Why now? For years, I lived comfortably in the ambiguous space of inactivity, accepting welcome plates of brownies, joking that I am now in a polygamous marriage to my remarried Mormon ex-husband while I have never been married in the eyes of my new Catholic faith (I had my Mormon marriage annulled). I never took the formal step of resigning from the church because I told myself it just didn’t matter that much to me.

The truth is that I left the church a long time ago, first mentally, as I had to face the growing cognitive dissonance that left me feeling broken and inadequate, then physically, as I drifted away to things that were more spiritually meaningful to me. As a practicing Mormon, I found that no matter how hard I worked or prayed, I simply did not feel a reassurance of a loving God. I did not have a testimony that Joseph Smith was a prophet. And I really didn’t think being Mormon was much fun. “If this life is all we have,” I thought to myself in 2007, realizing that I really did believe that, “then I’m wasting it.”

Kate Kelly’s excommunication was the catalyst for me to finish what I started so many years ago, when I found myself sifting through the ashes of a refiner’s fire I had never expected—my longed-for temple marriage broken, my faith destroyed. The reason I stayed active for so many years before my divorce, judging people who drank coffee, telling myself that a testimony would be the reward for obedience to rules that made no sense to me, was because of fear, not love. That fear kept me in the church for several years.

In 1993, I was a junior at Brigham Young University. One of my favorite professors, Cecilia Konchar Farr, was fired that summer, in part for supporting a woman’s right to choose. In September of that same year, six prominent Mormon intellectuals were called before church disciplinary courts and excommunicated for speaking their minds, for talking about the possibility of a Heavenly Mother, or for telling the truth about Mormon history. Joanna Brooks has written in excruciating detail about this experience and how it affected young Mormon feminists in her must-read memoir, The Book of Mormon Girl 

I heard the message the LDS Church sent then to women with doubts like mine. Get with the program, or get out. I stopped writing anything other than ward newsletters. And I got with the program—marriage, babies, ward callings, temple service, staying home to raise the children—for 13 long years.

I don’t regret the babies (now growing into lovely, independent people). I do regret all the rest. Like many who have left the Church, formally or informally, I feel betrayed by my former religion. That sense of betrayal is likely something that I will struggle with for the rest of my life.

Still, it’s no easy thing to leave the faith of my fathers. Like most people born into the Mormon church, I will never really be able to leave everything about that faith: so much of who I am was shaped by its culture and customs. And there are some things—the focus on family, the self-reliance, the way Mormons take care of their own in times of need, and of course, the music—that I continue to admire.

I am also tremendously grateful for the few church members who have remained my friends through my faith transition, and for the Kate Kellys of the world who continue to fight from within for what they believe is right. “Do what is right, let the consequence follow” was one of my favorite hymns when I was a child. I tried then—and I try now—to follow that advice. It’s just that I no longer believe that there is one right path for everyone, or that the bright-line path of Mormonism was right for me. The easy answers the church provides are no substitute for the hard questions I now ask myself about meaning and happiness. 

That's why I am joining other Strangers in Zion this Pioneer Day to declare that the Mormon church is not the right place for us. But that doesn't mean it's not the right place for you. One of my frustrations with the faith is the "us vs. them" mentality born in the persecution of the church's beginnings, the desire to be separate that drove the pioneers to seek safety in the mountain West. But this separateness does not always support the goal of building the Kingdom into a worldwide church.

The response of many faithful Mormons to Kate Kelly's personal tragedy was not Christlike by any measure. She was not a money changer in the temple. She is a faithful wife and mother in Zion. As a Mormon who chose to leave, I still remember the excuses I told myself when I watched others slip away. "It must be sin." Or "S(he) is too proud." Or "It's a pity s(he) would give up eternal salvation just because someone offended him/her." Or in the case of someone like Kelly, "What a tragedy that Satan has influenced him/her."

Maybe it's none of those things. Maybe people have genuine spiritual experiences that cause them to question their faith. I think most of us have these experiences. Some stay, ultimately finding peace and fulfillment in the Gospel. Others leave, finding peace and fulfillment in something else. But denying the validity of a person's experiences, or whitewashing the truth about your religion's doctrines, is not a good template for sustaining long-term membership in the club.

On this day, I celebrate my pioneer ancestors--their courage and faith in giving up one life to seek a better one in the Kingdom of God, "far away in the West." And I celebrate the heritage that gave me the strength to take my own spiritual journey. In the words of that still-dear Mormon pioneer hymn, "Happy day! All is well."

Sunday, June 15, 2014

All I Ever Did Was Love My Country

What we don’t—and can’t—know about PTSD (because we weren’t there)
My Dad, USMC Captain Theodore T. Long, Jr.

Note: this blog was originally written for www.BravotheProject.com. I wanted to re-post it for Memorial Day, but then the Santa Barbara shootings happened. So I am finally posting it today, in honor of my father, an American hero, and to highlight National PTSD Awareness Month.

“Oh yes, you asked me about the rocket attack on Denang, and well, honey, just don't worry about rocket attacks at all—they're really inaccurate.  Of course, we'd take it very personally if one hit us, but they are very inaccurate, and since I've been here, rockets haven't hit at all.” Captain Theodore T. Long Jr., USMC, in an audiotape mailed from Vietnam to my mother in Layton, Utah, February 1970

For reasons I don’t fully understand, I’m obsessed with the show Madmen. This season, the clothes get ugly, the soundtrack gets funky, and it’s time to talk about hard truths that never seemed possible in those early 60s Camelot times of JFK and Jackie, pearls and Hyannisport. The one scene from an early Madmen episode that still stands out for me is Don Draper and his (then) wife, Betty, picnicking beneath stately trees in early summer with their picture-perfect children. When they leave, they don’t bother to clean up the mess they have left—why would they?

What a mess. That’s what a group of veterans told me on a Monday in late April 2014, when I was invited to visit a group of Warrior Pointe members in the recreation room of a cinderblock Christian church in Nampa, Idaho. The men ranged in age from grizzled Vietnam veterans to young soldiers who had just returned from Afghanistan. Their leader and Warrior Pointe founder, Reed Pacheco, walked in with a cell phone to his ear. He was talking with a family member of a veteran who had threatened suicide and needed an intervention fast.

Pacheco, himself a veteran of Somalia, founded Warrior Pointe because he wanted to create a space where former soldiers could come together to talk about the issues that continue to haunt them. “The VA just isn’t there for us,” he said, as heads around the table nodded emphatically. This group of 20 men have taken a new mission upon themselves: no soldier left behind.

“The first thing people ask when you get back is ‘Did you kill somebody? How many people did you kill?’’” one Vietnam veteran told me. “They just don’t understand how inappropriate that question is. We did what we had to do. You can’t know what it means to sit, 40 years later, in front of a television set reliving the same 40 seconds, over and over and over. You can’t know. You don’t want to know.”

I learned more than a few things about courage in my hour with this veterans’ group. And I also learned more than a few things about how the United States has let its soldiers down. I often wondered why so many veterans’ groups were opposed to the Affordable Care Act of 2010. “It’s the same thing as the VA,” one Afghanistan veteran told me. “You wait and wait and wait for care. And when you finally get in to see someone, they just give you painkillers instead of recommending surgery or something you need to actually fix the problem.”

That delay of care has been in the news recently, with VA Secretary Eric Shinseki facing allegations that VA clinics delayed treatment to vets who desperately needed it, then covered it up.  No one disputes that patients waiting for care died. [Since this blog's original publication, Shinseki has resigned].

The Warrior Pointe organization recognizes that all of its members, no matter where or when they served, suffer from some sort of PTSD—Post-traumatic Stress Disorder. The controversial DSM-V revised criteria for the disorder, which is now described as “a history of exposure to a traumatic event that meets specific stipulations and symptoms from each of four symptom clusters: intrusion, avoidance, negative alterations in cognitions and mood, and alterations in arousal and reactivity.” 

Pretty much everyone who went to war to defend our country could suffer from PTSD. My father likely did.

But the Warrior Pointe veterans feel empowered to help each other, where they feel the Veterans Administration has failed them. “We are all brothers,” says Tom Bosch, who suffered a traumatic brain injury in Iraq. “We understand each other. We can talk to each other. We can support each other.”

My father served in Vietnam. While the Don Drapers of the world were enjoying three-martini lunches and free love, my Dad sent anxious audiotapes to reassure my mother, who heard nothing but bad news about the war at home. Dad didn’t have to serve. He was his father’s only surviving child. He set out to write his senior thesis in Political Science to defend the Vietnam War. As he researched the subject, he concluded there was no justification for America’s involvement in Indochina. Then he graduated from college and went to Vietnam anyway.

My Dad flew medical rescue missions. As far as I know, he never killed anyone. He came home to life as a husband and father and used the GI Bill to pursue his passion to study law. But I will never forget the morning we were running errands in Bakersfield, California. The road was blocked to allow a parade, a hero’s welcome for the warriors of Desert Storm.


When I looked at my Dad, I was surprised to see tears streaming down his cheeks. “They spit on me when I got home,” he said quietly. “They called me a baby killer. All I ever did was love my country.”

Wednesday, June 11, 2014

Dear Mormons: Count Me Out!

I'm a Mormon.
Views from the Diaspora on the LDS Ordain Women Movement 

On April 5, 2014, a group of brave, dedicated, faithful women, some of them personal friends, tried to attend a semi-annual conference that has traditionally had a large “No Girls Allowed” sign on its front door—and has no plans to change its exclusionary and hurtful practices any time soon. Of course, my friends were turned away. These women are part of the Ordain Women movement in the Church of Jesus Christ of Latter-day Saints.

Today, the New York Times reported that Ordain Women founder and human rights attorney Kate Kelly had been summoned to a disciplinary hearing, where she may be excommunicated from the church she has fought so hard to change. Mormon Stories podcaster and gay rights advocate John Dehlin, a husband, father, and fifth-generation Latter-day Saint, was also summoned to a church disciplinary court in what Flunking Sainthood’s always insightful Jana Riess has predicted may signal the beginning of a new Mormon purge. 

I’m no longer a practicing member of the Church. But like many of my friends who have stopped attending Sunday meetings, I still consider myself culturally Mormon. When Facebook asks me for my religious views, the best thing I can say is, “It’s complicated.” So I’ve watched from the sidelines as my feminist friends who are still faithful Latter-day Saints agitate for change, cheering my girlfriends on, but believing that it’s not my fight. My suspicions, rooted in historical fact, are that no one ever got anywhere by walking up to the doors of the patriarchy, knocking politely, and asking to be let in.

I haven’t weighed in on Ordain Women until now because frankly, I felt like my voice didn’t count, that it wasn’t my fight. After all, I left on my own. I’m not like Kelly, who told Buzzfeed’s Laura Marostica “I never considered leaving the church. That was never on the table for me. I’m more of a person who’s like, ‘Well, I’m in an institution and I can see it needs to be improved. It needs to change; I don’t need to leave.’” Talk about the faith to move mountains!

In response to OW’s plans to attend the Priesthood Session in April, the church’s PR spokesperson Jessica Moody attempted to minimize and marginalize the efforts of my faithful friends: "Women in the church, by a very large majority, do not share your advocacy for priesthood ordination for women and consider that position to be extreme," she told Ordain Women, saying that 1,300 women who signed the OW petition were not significant in a worldwide church of 15 million members.

Well, if you’re going to count them, maybe it’s time to count me.

Because here’s the thing. When the Church says that it has 15,000,000 members, they are counting me, and lots of women like me. They’ve never formally kicked me out, at least not to my knowledge, though I’m WAY more apostate than Kate Kelley or John Dehlin. In fact, I’m so apostate that I actually went to the Dark Side, joining the Roman Catholic Church, which former Mormon General Authority called “the great and abominable church” in his first edition of Mormon Doctrine (a statement which, to be fair, was repudiated by other Mormon leaders).  Sorry, Mormons, but #OurPopeBeatsYourProphet.

Unlike many of my post-Mormon friends, I’ve never formally asked to leave. It wasn’t that big a deal to me. I still get monthly newsletters from my Relief Society visiting teachers and the occasional much appreciated plate of brownies or other home-made treat.

But if I count as a member, then I should count as a woman who left the church because I felt marginalized by policies that relegated me to the position of a second-class citizen. Motherhood does not equal priesthood, or even womanhood, for that matter. And nothing I know about Jesus leads me to believe that is God’s plan for me, or for any other woman I know.

Some of us who are still counted as members simply lacked the patience or just plain perseverance to continue to fight from within. So we drifted away, one by one, feeling, as I did, increasingly marginalized and irrelevant in a culture that emphasizes and celebrates two-parent, so-called traditional families as the pinnacle of righteous living (and hey, girls, as a carrot at the end of life’s stick, women can be “Heavenly Mothers” to millions of spirit children. No thanks—I didn’t like being pregnant in this life, so I’ll pass on that in the next one).

I can’t give you any hard and fast numbers. But everyone knows the Mormon Church is losing members fast, as both new converts and the long-time faithful grapple with cognitive dissonance, discovering less-sanitized views of their religion’s formerly white-washed (I chose that term deliberately) history.

After I expressed support for my OW friends on Facebook, one of my friends, a woman I deeply respect who is still an active member, messaged me to say that she just didn’t feel like she needed the Priesthood, since she always had access to its blessings. I remember feeling that exact same way when I was married. But after my divorce, I realized that in fact, I did not have access to those blessings in the same way married women did.  

Indeed, the issue of gender inequity affects both my former (cultural) faith and my new (spiritual) faith, as Chris Henrichsen noted in his article, “We Are Already Seeing an Exodus of the Faithful.” He quoted BYU Professor and Catholic Damon Linker’s oddly prescient observation: “in both Catholicism and Mormonism, there’s often nowhere else to go. It’s either love it or leave it.”

It seems a lot like the Pharisees’ approach to Jesus’s radical notion: “Love thy neighbor.” It's not “judge thy neighbor.” Not “expel thy neighbor.” But “Love thy neighbor.”

To John, Kate, and all my friends who are fighting for love within the religion they have chosen, I wish you every bit of luck on your spiritual quest. They would be silly and short-sighted to lose you. But to the people whose interpretation of love is to close doors and shut windows, to those “faithful” church members, I say #MormonsCountMeOut.

Tuesday, June 3, 2014

The Great Divide

Hendric Stattmann"The Grand Canyon"
Two bills in Congress, both designed to improve mental healthcare, reveal a growing rift in the mental health community

Like many parents of children with mental illness, I have spent much of my life feeling isolated. At social events or the morning water cooler, while other parents share their children’s accomplishments—“Mary got elected to Student Council! John got the MVP award for his soccer team!”—I am usually silent. It’s hard to brag about how your child was able to plead his misdemeanor battery charge down to a mere juvenile beyond control status offense, or how he was the star patient in his psychiatric ward last weekend, even though both are arguably notable accomplishments.

When I finally spoke out about the struggles my family faced, I found an instant new community of friends, mothers like me who had become vocal advocates for their children’s care. But I also discovered that not every mental health advocate supports the same goals I do. This rift in the very advocacy community that should be supporting parents like me and kids like my son has been growing for a while. The divide has widened even further after the tectonic tragedy in Santa Barbara, when a young man whose parents had sought treatment for his mental illness for years took his own life—and the lives of six other people.

At its center is a disagreement about serious mental illness—schizophrenia, bipolar disorder, and major depression—and the best ways to care for this vulnerable population. That disagreement is evident in the contrast between two proposed bills that both seek to remedy America’s broken mental health care system. To my mind, the biggest difference between the two bills is this: one treats people with serious mental illness. The other does not.


One of the most controversial features of Representative Murphy’s HR3717, the “Helping Families in Mental Health Crisis Act,” is its Assisted Outpatient Treatment requirements, which the opposition has labeled “forced treatment.” Yet even Representative Barber, the author of the second bill, acknowledged on Monday’s Diane Rehm Show that “involuntary treatment is necessary from time to time.” And many of the provisions in HR 3717, including a revision of HIPAA laws, might have stopped Jared Loughner before he shot Rep. Barber in Tucson.


Dr. John Grohol and others like him are worried about “arbitrary distinctions” in mental illness he says HR 3717 creates. I agree with Dr. Grohol’s point that all mental illness can be crippling or even deadly, just as a cold, if left untreated, can lead to fatal pneumonia. But I also think we do need distinctions in mental health, just as we have them in physical health. The current focus on behavior rather than organic brain disease is the real challenge in making sure that people with serious mental illness get the medical care that they need. As I mentioned in an earlier blog post, “Oh SAMHSA, Where Art Thou?” there is no readily apparent or useful information for me, as a parent of a child with serious mental illness, on SAMHSA’s home page. And this is the government agency tasked with providing resources to people with mental illness!


As I read the opposition’s often vitriolic attacks on mothers like G.G. Burns, a friend of mine who shared her family’s painful story with Diane Rehm yesterday, I’m reminded more of religion than science. We have this very human tendency to rely on our own belief systems about the mind, and especially about our ability to choose and to be accountable for our choices, rather than looking at the choice-stealing reality of brain disease. G.G., in talking about her efforts to get treatment for her son, told a harsh truth: “We are forced to watch our loved ones die with their rights on. Without help, there is no hope.”


The comments section of Diane’s show demonstrates the wide variety of challenges parents continue to face, and why so many of us are still afraid to share our stories. We have the mental illness deniers, the Mad in America anti-medication crowd, the folks who blame our bad parenting, the consumers who think that everyone with mental illness can seek treatment and recover like they did, and the E.F. Torrey haters (and boy, are they an angry bunch! They should try some SAMHSA sponsored yoga!).

Still, I think that a robust discussion about HR3717 is a good thing. Task-oriented conflict can ensure that the end result—fixing our broken mental healthcare system—is the best it can possibly be. And certainly the experiences of people who have experienced involuntary commitment need to be carefully considered (see this powerful essay at "The System is Broken," for example ). I wish Diane Rehm had included the voices of people with serious mental illness on her show.

But when we rely on our belief systems about what mental illness is (or isn’t), when we retreat to our anecdotal or lived experiences rather than considering other points of view, it can be too easy for the dialogue to devolve into person-centered attacks rather than focusing on productive, inclusive solutions. We don’t have time for any more of that kind of talk. The consequences of inaction on mental illness are unacceptable. We cannot continue to treat serious mental illness in prison, or to ignore it on the streets. That’s why I support HR 3717.

Monday, May 26, 2014

Without Us

Treatment before tragedy. Photo by Daniel Battiston, freeimages.com
Why are some mental health advocacy groups opposed to critical healthcare reform for serious mental illness?

Early Saturday morning, I woke up to the news of another mass shooting, this time in a pleasant Santa Barbara neighborhood. Details were still sketchy at that point—the shooter was young, white. and male. I turned off my computer, packed my kids and our camping gear in the car, and headed for the hills, out of cell phone range.

Like so many other mothers of children who have mental illness, I knew how the story would go. His parents would have sought treatment. He would have had encounters with law enforcement. Probably he was bullied as a child. He played violent video games. And now, he—and six other young people, all of them with promising futures—were dead.

When we returned this afternoon, sunburned and covered in sand from playing all morning on the dunes, a few new details of the story surprised me: the connection to Hollywood, the misogynistic YouTube rant (see Laurie Penny’s analysis here), the Fox News allegations that Elliott Rodger was gay (???). But Fox News aside, the media seemed to be paying far less attention to the tragedy than they were to NASCAR.

It seems as if after Newtown, we just gave up. We decided that this is the kind of society we are going to live in—a society that has too many guns, and a society that chooses to ignore people with mental illness and their families, at great cost (see Liz Szabo’s timely piece in USA Today).

Part of the problem is that just as gun control opponents and gun control advocates can’t agree on even common-sense things like background checks, the mental health community can’t come to a consensus about how best to fund—and treat—mental illness. As I’ve shared before, my son has a serious mental illness. For him, and for my family, medical treatment has restored a sense of normalcy to our lives. But not everyone thinks the medical model is best for treating mental illness.

Right now, there are two competing bills in Congress. HR 3717, the “Helping Families in Mental Health Crisis Act” proposed by Rep. Tim Murphy, promises hope to families and children like mine. The other, the “Strengthening Mental Health in Our Communities Act” proposed by Tucson shooting survivor Rep. Ron Barber, maintains the status quo, a broken and fragmented system that requires patients to be well enough to seek their own care and promotes a focus on behavior and prevention, two concepts that don’t apply to people who have organic brain diseases, people who are too often “treated” in prison or ignored on the streets.

What I want—and what Elliot Rodger’s parents no doubt wanted—is “treatment before tragedy.”

Last week I attended a webinar sponsored by SAMHSA-funded mental health advocacy groups who are opposed to HR 3717. As the mother of a child who has a serious mental illness, I’m a supporter of Rep. Murphy’s bill. But since I also volunteer for and donate to organizations that get grants from SAMHSA, I wanted to understand the other side.

The phrase “Nothing about us without us” was used 30 times in the course of the hour-long webinar. This dictum establishes the common sense model of including people with mental illness in crafting legislation that would affect their lives. It’s a good idea, and that’s exactly what Representative Murphy did over the course of his year-long post-Newtown investigation into the myriad problems that continue to plague our mental healthcare delivery model. You can read the final report here

But at the end of the webinar, I was left wondering who these probably well-meaning and sincere advocates meant by “us.” Because I don’t think they are talking about me or my son, or hundreds of other families I know.

“When young men rage and scare their families, where are they supposed to go?” a friend who was also on the webinar and whose adult daughter suffers from bipolar asked me. “I feel like I have to beg my government not to imprison my child or leave her on the street to get prostituted out or taken advantage of by druggies. All while they spend money in the name of the illness she suffers from.”

The problem is that many of the sickest among us do not know that they need help. And even if they—or their families—realize they do need help, as Creigh and Gus Deeds did, too often there are no resources available. That’s why anything less than HR3717, the comprehensive transformation of our broken mental health care system proposed by Rep. Tim Murphy and backed by 86 bipartisan legislators, is so critical.

My son has never gone to an acute care psychiatric hospital willingly; in fact, it usually takes 2-3 police officers and a tranquilizer to get him into care. I can’t do it on my own. But at least he’s still a minor, so I can make sure he gets the help he needs—if we are lucky and beds are available.

And at least when he’s not in a manic rage, he’s aware of his illness and wants to take his medications.

What happens when he turns 19? What happens if he decides not to take lithium anymore?

The alternate bill proposed by Rep. Barber fails to address this all-important question, and many others that will haunt the investigation of this most recent mass shooting.

According to Susan Mosychuk, Rep. Murphy’s chief of staff, the bill introduced by Rep. Barber 
denies inpatient and outpatient treatment options to those who are experiencing an acute mental health crisis. It denies families the opportunity to be part of the care team and help their loved ones with serious mental illness. And it denies the reality that the lead federal agency, the Substance Abuse and Mental Health Services Administration, has failed in its mission. It’s almost as if the Barber bill wants to deny that people with severe and persistent mental illness exist. Denial doesn't work for substance abuse, and denial won't work for the families whose loved ones are in a mental health crisis.
Allen Frances, the author of Saving Normal, articulated the problem beautifully: “This is the cruel paradox haunting our mental health non-system: we deliver way too much care to basically normal people who don't need it, while providing way too little care to the really sick people who desperately do.” 

So why are some mental health advocacy groups opposed to Rep. Murphy’s bipartisan-backed legislation?

In the webinar I attended, they gave three reasons: that the medical model of mental illness would prevent people from seeking mental healthcare services, that requiring accountability and restructuring SAMHSA would eliminate or curtail innovation in mental healthcare, and that HR 3717 discriminates against people with serious mental illness by forcing treatment through its Assisted Outpatient Treatment provisions. While civil rights are undeniably a concern for those with mental illness, forced treatment and loss of civil rights already occurs when we choose to treat them in prisons rather than in hospitals.

Though this conclusion disturbs me, I think the real opposition to HR 3717 comes down to money. Organizations are afraid of change, and they are afraid of losing their funding. But as the most recent tragedy so clearly demonstrated, we can’t keep doing things the same way and expect our outcomes to be better. Those of us who have serious mental illness deserve a chance at hope and health. We deserve, as my son does, to have a life worth living—and to live that life. Please don’t support proposed legislation that is written without us, the parents who love our children and want treatment before the next tragedy.


Sunday, May 11, 2014

If Only Mother’s Day Were Every Day

Thoughts on why the day doesn’t mean that much to me

The Other Happiest Place on Earth
Every year on Mother's Day weekend for as long as I can remember, the kids and I have packed the Suzuki full of tents, sleeping bags, sleds, and s'mores fixings for our annual camping trip to Bruneau Sand Dunes State Park. The sand dunes are the largest freestanding dunes in North America, and they are one of my happy places, full of good memories. We hike on the sand, chasing (and sometimes catching) lizards and snakes. We cool off in the lake and try to avoid fire ants. We join other families in hiking up one of the smaller dunes and sledding down. At night, we wait our turn to look through the giant telescope at star clusters and galaxies hundreds of light years away.

Then there are the two largest dunes, the park’s main attraction. In the early evening when the air is cool but the sand is still warm, we hike the big dunes. It's not an easy hike, as anyone used to sand will know. You have to plant your feet, go slowly, and expect some sliding. But when you reach the ridge and can see miles of Idaho countryside greened by spring rains, the silver ribbon of the Snake River in the distance, and sweeping skies that feel like falling in love for the first time, it's all worth it. We pause for a moment to rest before the real fun begins. Once we have hiked the length of the ridge back to the trail head, we leap in giant strides, like moon walkers, then fall and roll, laughing and screaming with pure joy.

But back to the holiday at hand. Part of the reason I usually leave town is that I'm uncomfortable with Mother’s Day and always have been. When another friend expressed similar discomfort on her Facebook page this weekend, as everyone else was posting pictures of their wonderful mothers, I snarked, "Mother's Day. AKA Guilt Trip Day. AKA ‘Just pay me the same as a man and skip the flowers’ Day.

We decided not to go this year. A forecast of rain, hail, and frost kept us Boise-bound, safe and warm, watching Minecraft videos on You Tube. Plus, physical ailments--hemorrhoids and that wonderful monthly bleeding, designed by their very nature to remind me of motherhood—made the trip seem less appealing for me; I was more inclined to enjoy “my” day with a glass of wine and a bottle of Vitamin I (ibuprofen) close at hand. 

I also used the weekend to re-establish control of the dire laundry situation, which had come to resemble that Star Trek episode where the cute little Tribbles start reproducing until there’s no room left on the Enterprise. After 13 loads washed, folded, and put away, I am proud to say I have everything under control except the socks—and that’s okay, because I raised my kids to think that mismatched socks were the epitome of coolness, a fashion statement rather than a faux pas.

The fact that I'm not fond of Mother's day does not mean I don’t love my mother. My Mom is one of those remarkable people who seem quiet enough when you first meet them, and then you learn that she raised six kids after her husband died of cancer, has two Masters degrees, loves to write and direct children's theater, can build a house from the ground up, and hiked to the top of Mt. Whitney at the age of 64, mainly (I think) because she wanted the summit photo as her Christmas card picture.

Maybe it’s my Mom who taught me not to be comfortable with Mother’s Day. From an early age, I was sensitive to the following groups of people who shared my gender:

  1. Women who are not mothers, for whatever reason.
  2. Women who are raising their children on their own, for whatever reason.
  3. Women who have lost a child or children, for whatever reason.
  4. Women who have lost their own mothers, for whatever reason.   
For all these women, Mother’s Day can bring more sorrow than it does joy. And instead of passing women-friendly legislation, or putting more women on corporate boards, or electing more women representatives, or fighting for women’s reproductive rights, or passing living wage laws that mostly help single moms, or helping mothers with families in mental health crisis, we relegate the whole “Mother” thing to a single day characterized by sappy cards and Champagne Brunch. (Not that I am complaining about the Champagne Brunch, mind you!).

We’re going to Bruneau next weekend. The forecast promises sunny skies and clear night for star gazing. As I look at those star clusters, millions of light years from earth, I’ll think about how far we still have to go to make every day a Mother’s Day. And how grateful I am to share my happy place with four children who gave me 13 loads of laundry, hemorrhoids…and so much more.