Thursday, October 23, 2014

The Third Week of October

Some Memories Never Fade

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

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

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

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

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

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

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

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

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

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


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

Monday, October 6, 2014

Singing to End Stigma

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

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

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

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

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

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

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

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

Wednesday, September 10, 2014

Little Blue Dress

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

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

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

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

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

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

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

“Sounds great!” she replied.


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


Thursday, August 28, 2014

The Price of Silence

Dear Friends,

This is a humbling day for me. The first time I read a book and realized the power that words can hold over our hearts and minds, I knew that I wanted to write. Today, my dream of publishing a book has come true with The Price of Silence: A Mom's Perspective on Mental Illness, from Hudson Street Press.

But for me, the price of realizing my dream was beyond anything I imagined. I wrote The Price of Silence because like most  of us, after Newtown, I wanted answers. My quest through the complex and often hostile systems that families and children who have mental illness must navigate was personal: I live this experience daily with my dear son.

Kirkus Reviews described my book as "a searing indictment of the lack of affordable care available for the treatment of mentally ill adolescents."


Andrew Solomon, author of Far From the Tree (which everyone should read), wrote: 
In this courageous, determined, radical book, Liza Long exposes the dearth of alternatives for parents of kids with mental illnesses, the shame that attends their perceived failures, and the hope that such families may find their collective voice and demand better options.  I hope her passionate cry is heard far and wide.
I am profoundly grateful to the families, providers, police officers, educators, and advocates who shared their often painful stories with me. It's not easy to talk about mental illness; I know that truth firsthand. And I am especially grateful to my son, whose perspective provides valuable insight into mental illness and how it affects children. His humor, intelligence, and love have made my life immeasurably better. He is not a bad kid--he is an incredibly brave kid (and he just finished writing his first book! At age 14! It's about demigods from outer space).

But today, though I am grateful that so many people are speaking up and sharing their stories. I am also saddened at our inability as a society to act. People who have mental illness, including children, are "treated" in jail or left to die on the streets or by suicide. This is a national tragedy of epic and growing proportions. I feel that we have a moral obligation to care for our children, brothers, sisters, parents, friends, and colleagues who have mental illness.

I hope you will read my book. But more importantly, I hope that you will join me in speaking up for change. Please contact your representatives in  Congress. Join Treatment Before Tragedy. Participate in your local NAMI walks this fall. And share your stories. Their truth is powerful. Together, I know we can make a difference. In the words of one of my favorite poets, Robert Frost:
 
Only when love and need are one, 
And the work is play for mortal stakes
Is the deed every really done
For heaven and the future's sakes.

These are our children, and this is their--and our--future.

Best to you all!

Liza

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

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

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



Thursday, August 14, 2014

Commit or Complete?

Why we need to choose our words more carefully when we talk about suicide
credit: TreatmentbeforeTragedy.org

On August 12, 2014, as the tragic news of Robin Williams’s death spread like a contagion through my Twitter feed, I realized something: you could tell how old people were by the movie lines they quoted in response. For me, it was Dead Poet’s Society, that iconic struggle of life (and death), and the Walt Whitman line, “That the powerful play goes on, and you may contribute a verse.” Or a whole stanza, when you’re an epic figure like Robin Williams.

My next thought, though, was of David Foster Wallace. I took his 2008 suicide pretty hard. Foster Wallace was one of those authors with whom I had an intellectual affair of sorts—when I read Infinite Jest, I felt like he was speaking to me in a code that only he and I could understand. So of course, upon learning that Robin Williams’s heroic struggle with lifelong depression had ended, I thought of Foster Wallace’s description of why people who suffer from a choice-stealing brain disease sometimes end their own lives:
“The so-called ‘psychotically depressed’ person who tries to kill herself doesn’t do so out of quote ‘hopelessness’ or any abstract conviction that life’s assets and debits do not square. And surely not because death seems suddenly appealing. The person in whom Its invisible agony reaches a certain unendurable level will kill herself the same way a trapped person will eventually jump from the window of a burning high-rise.”
I felt the exact same sadness upon learning of Robin Williams’s untimely exit from this world that I would have felt if I had learned that his struggle with cancer or any other disease had ended. But not everyone saw it that way. If you didn’t read Matt Walsh’s tone-deaf diatribe describing suicide as a choice, don’t. But if you did, see how his words read when the word “depression” is replaced with “cancer,” and you’ll have some idea of how hard it still is to talk about mental illness.
Also, incidents like this give us an opportunity to talk about cancer, and we certainly should.  Only we shouldn’t turn the subject into a purely cold, clinical matter. “Chemical imbalances,” people say. “A man is cancerous because of his brain chemicals, and for no other reason.” 
No, we are more than our brains and bigger than our bodies. Cancer is a mental affliction, yes, but also spiritual. That isn’t to say that a cancerous person is evil or weak, just that his cancer is deeper and more profound than a simple matter of disproportioned brain chemicals. And before I’m accused of being someone who “doesn’t understand,” let me assure you that I have struggled with this my entire life.
Like Matt Walsh, like many people, I have had my own struggles with depression. David Foster Wallace’s description of suicide resonates with me so strongly because late one night, in the throes of despair at the end of my marriage, overwhelmed by a loss of faith, I thought I was at the top of a burning building, and I thought I would have to jump. In that moment of agony, I truly believed there was no other way, that the world would be a better place without me.

And in that moment, by chance or by grace, one of my children woke up and came to me, like an angel, and said, “I love you,” and cuddled in my arms, his head snuggled just below my chin, like he did as a baby. I’m probably remembering this quote wrong, but I think the Greek dramatist Sophocles said something like “Children are the anchors that hold a mother to life.” In that moment, anchored to life by my sweet child, I knew I could—and would—escape the burning building and live.

But unlike Matt Walsh, I do not begin to presume that my ability to survive serious thoughts of suicide was in any way due to something special about me. I’m not strong or brave or unselfish; I was lucky. And I had an incredibly happy childhood, which makes up for a whole host of ignominies later in life. Very few people in this world are as fortunate as I am, and I give thanks for what I have every single day.

Words have power. And words are our only way to move beyond the solipsistic existence of our own minds and into shared community with others. Yet the existential conundrum of life is that we are all, ultimately, alone. As Andrew Solomon noted in his poignant tribute to Williams, “The Crime of Loneliness,”
“A great hope gets crushed every time someone reminds us that happiness can be neither assumed nor earned; that we are all prisoners of our own flawed brains; that the ultimate aloneness in each of us is, finally, inviolable.” 
Which brings me to language, that mechanism of hope that sometimes allows us to escape the prison of our own minds. Here’s the thing: the word “commit” and the word “suicide” don’t belong together. They just don't.

In certain contexts—career, relationships, goals—the word “commit” has positive connotations. My friend Heidi Reeder’s book Commit to Win, for example, outlines strategies to succeed in work and life by harnessing the power of positive commitment. I think we would all agree that this kind of commitment—a choice to focus on the people and things that matter most to us—is good.

But in mental illness, the word “commit,” in both its active (e.g., “to commit suicide”) and passive (e.g., “to be committed to an institution”) forms, has damaging connotations that falsely convey a sense of choice where too often no meaningful choice exists. People don’t “commit” suicide. They die by suicide, or they complete suicide (too often after more than one attempt).

Dr. Thomas Joiner has made it his life’s work to understand why mental illness sometimes leads to death by suicide; he notes that the rarity of suicide notes suggests how profoundly alone and unable to communicate people who take their own lives feel at the end of their existence:
“To say that persons who die by suicide are lonely at the time of their deaths is a massive understatement. Loneliness, combined with alienation, isolation, rejection, and ostracism, is a better approximation. Still, it does not fully capture the suicidal person’s state of mind. In fact, I believe it is impossible to articulate the phenomenon, because it is so beyond ordinary experience. Notes are rare because most decedents feel alienated to the point that communication through a note seems pointless or does not occur to them at all." 
Much has been written about mental illness and stigma. I myself have said that “it’s time to talk about mental illness.” But as Dr. Joiner observes in his 2010 book, Myths about Suicide, “Talk about suicide is not cheap.” With suicide, the stakes are very real.

There are therapeutic treatments for mental illness, just like there are therapeutic treatments for cancer. But with both diseases, not everyone survives. Robin Williams’s death was a tragedy, but it also gave us an opportunity to speak up, to share our stories, and to demand better treatments, earlier interventions, and evidence-based care for brain disease. We need Treatment before Tragedy.

The words we use to describe suicide—and mental illness—matter. They shape our very understanding of the disease, and how we treat the people who have it, including ourselves and our loved ones.

As William Stafford, himself a venerable member of the Dead Poet’s Society, wrote (far better than I could, and with words I think Robin Williams would appreciate):

"And so I appeal to a voice, to something shadowy,
a remote important region in all who talk:
though we could fool each other, we should consider--
lest the parade of our mutual life get lost in the dark.

For it is important that awake people be awake,
or a breaking line may discourage them back to sleep;
the signals we give—yes or no, or maybe—
should be clear: the darkness around us is deep."

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."