Sunday, December 14, 2014

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. 


Monday, December 1, 2014

Everything I Know about Success I Learned from Failure

Five Life Lessons that Were Worth the Bruises

If you fall out of a standing bow pose, get right back in it!
You've got time.
I got rejected by Huffington Post today. It stung a little; I thought my essay was interesting and insightful, but their editors didn’t agree. Still, even as my lips curled into a slight frownie, I realized I was grateful for the pinch, the little reminder that I’m not going to win at everything, and even more importantly, that I don’t have to.

The rejection email served as a reminder of far bigger failures, not stings but major body blows. I’ve weathered some more gracefully than others. But without a doubt, each significant failure in my life led to important self-knowledge that has shaped me into the person I am today. As a quick aside, I’m well aware that every one of these failures could be hashtagged as #firstworldproblems. I’ve been truly blessed in my life with extraordinary opportunities.

Failure: When I was 17, I got a C in high school calculus.

What that meant in the short term: My poor performance in calculus destroyed any hope I had of accomplishing a major (at that point) life goal to graduate among the top ten students in my high school class.

What that meant in the long term: Absolutely nothing. I still got accepted to my first choice college with a full scholarship. And as an added bonus, I aced the AP Calculus test, so I didn’t have to take a single college math class.

Life lesson: When you give 100% and only earn a 78%, you should still be proud of your efforts. But also, you don’t have to be a rocket scientist if that’s not your calling.

Failure: When I was 25, I dropped out of a Ph.D. program in Classics after giving birth to my first son.

What that meant in the short term: I was so disappointed in myself for being unable to accomplish another (at that point) life goal, in part because of my own shortcomings as a scholar: in all honesty, I do not think I could have passed my Ph.D. language exams without significantly more effort than I was willing to expend. Also, I learned pretty quickly that I was not one of those moms who could “do it all,” juggling the demands of a rigorous academic program with the far more baffling demands of a colicky newborn baby and the attendant sleep deprivation.

What that meant in the long term: When I finally decided to return to graduate school at the age of 37, I was ready to study something that really held my interest and fit my skills: Organizational Leadership. My comprehensive exams a few weeks ago were by no means easy—I’m still biting my nails as I wait for the results. But I felt fluent in the language of change management and motivational theory in a way I never was with Latin or Greek. Also, my Classics training was not a waste of time: I learned rhetoric from Aristotle and Plato, and they proved to be pretty good teachers.

Life lesson: Sometimes it’s okay to quit. And you’re never too old to go back to school.

Failure: When I was 35, my 13-year marriage to the man I thought was the love of my life imploded.

What that meant in the short term: To say that I was devastated is an understatement. I’ve always been one of those people who believed that you marry one person, and you make it work. Worse, we had four children, ages 2, 3, 7, and 8. Feeling like I had failed my (then) husband was awful; feeling like I had failed my children was nearly unbearable.

What that meant in the long term: It took me several years of intense personal therapy and hard work to understand that while I certainly played a role in my marriage’s demise, it was not all my fault. I learned to value myself, to communicate more authentically, and ultimately, to love again.

Life lesson: Take a chance on second chances—but take the time to know—and love—yourself first!

Failure: Just a few weeks shy of my 40th birthday, I was fired from my dream job, and I learned I had stage 0 cervical cancer.

What that meant in the short term: On my 40th birthday, I was an unemployed single mother of four children with no health insurance and a cancer diagnosis! This had always been my greatest fear. And to my surprise, it turned out to be one of the greatest gifts I’d ever received from the Universe. I never would have gone to the doctor for a long overdue pap smear if I hadn’t been about to lose my benefits, so in a way, getting fired may have actually saved my life.

What that meant in the long term: For the first time since I became a mother, I had time for me. While the kids were at school, I did 60 days of hot yoga. I started blogging again. I took long walks and thought about gratitude. I had a minor successful surgical procedure. I volunteered in my kids’ classrooms, took my teenagers skiing, and treated the family to lots of home-cooked love. In fact, we still look back on those few months of unemployment with a bit of nostalgia. Now I’m in my dream job again—at a much more ethical organization.

Life lesson(s): Your job, even your dream job, does not define you. Also, if you’re a woman, get regular Pap tests.

Failure: On December 14, 2012, after 8 years of calls to the police, visits with numerous doctors and specialists, jail time, and hospitalizations, my son was in an acute care psychiatric hospital again. I had no idea how to help him.

What it meant in the short term: I was truly and completely helpless. And I did what I have often done, what I am doing now, in fact, when confronted with failure: I wrote it out. I told my truth. No mother wants to admit she can’t help her child. I admitted my helplessness to the world.

What it meant in the long term: We found help and hope. My son was diagnosed with bipolar disorder, and the treatments are working. I also learned that I was far from alone in my perception of myself as a failure, but that in fact, the mental healthcare system was failing me and so many other families. While writing my book, The Price of Silence: A Mom’s Perspective on Mental Illness, I was able to find even more solutions to the heartbreak. I continue to advocate for children like my son and for moms like me.

Life lesson: Never give up on the people you love, even when you’re exhausted. They are worth your best, hardest fight. But it’s okay to admit you are tired and to ask for help when you’ve done everything you can do.

These five are just the big failures. In my life, as in most people’s lives, most blog posts don’t go viral. Most calls for change fall on deaf or ignorant ears. But these five big failures have taught me resilience. I’ve learned to take charge of my own life, to be honest with myself and others, and to ask for help when I need it.

A few hours after the HuffPost rejection, I got a call from a friend. He had just received copies of a new college textbook, The Elements of Argument, which includes essays by Michael Pollan, Hillary Clinton, Henry David Thoreau, and me. Another essay I wrote once upon a time, the one about my failure to help my son, was picked up for my Huffington Post debut under the title “I Am Adam Lanza’s Mother.” Now it will be used to teach Aristotelian argument to students in college courses.

I’ve come full circle.

Thursday, November 27, 2014

My Thankful Turkey

Thanksgiving traditions bind the years—and family—together

We brined the turkey with good results.
Every year on Thanksgiving for as long as I can remember, I’ve made a Thankful Turkey. It’s probably something my mother started, and like her famous apricot Jello salad, it has become a mainstay of this fourth Thursday in November, a tangible reminder of all I have and how grateful I am. I’ve passed the tradition on to my own children: each year, we trace our hands on brown construction paper, then cut colorful feathers in red and green and blue. A sharpie makes the eyes; a small yellow triangle the beak.

Then we write what we are thankful for. This year, my children are grateful for family, friends, food, and video games.

And I am grateful for them.

This year, my family celebration is small—just three of us. The younger children are with their father, and my oldest son is with his grandma in California. He claims my mother’s Thanksgiving spread is superior to mine, that it is, in fact, “the best Thanksgiving dinner anywhere on planet Earth.” He’s right.

This year, my turkey is small, and after consulting with my husband and my one remaining child, I have decided to forego making pies (none of us actually like them) and stuffing (too many calories). But my son insisted on the Jello. I only make Jello twice a year, and my mom’s recipe, with its pineapple custard and Cool-Whip topping over layers of bananas and marshmallows, is really a culinary delight that rivals anything I’ve eaten in a five-star restaurant.

Jello salad is love.
I am thankful for that Jello, and for everything it represents. One of my first memories is standing barefoot on a step stool (we never wore shoes in Hawaii, where I spent my first few years), stirring and stirring as my mother poured hot water over the orange colored crystals. It seemed like a magic trick to me, the way the liquid would set into something that was not quite a liquid, not quite a solid, a delightful slippery colloid that rolled around in your mouth and jiggled on the plate, casting amber-colored light on the wall when the sun hit it just right.

Each year, I learned more about how to cook a Thanksgiving dinner. At six, I snapped beans. When I was eight, I learned to make rolls, kneading the soft stretchy dough with my balled fists, then pushing it “like a mushroom” (my mother’s words) through a circle I formed with my thumb and forefinger. My rolls were smaller than mom’s, and awkwardly formed at first. But each year, they were more and more round.

At ten, I made the mashed potatoes (“don’t skimp on the butter!”); at twelve, I was I charge of gravy (“use ice cubes to defat the turkey drippings.”). But my mother always made the turkey, rising at five in the morning to prepare the massive bird that would feed six children and a few missionaries.

I’ve been thinking a lot lately about how the food we make for our children is a tangible sign of our love for them. Sure, we could feed them a steady diet of pop tarts, and they would probably grow up just fine. But for me, at least, providing my family with a home-cooked meal made with fresh, wholesome ingredients is a part of an unspoken contract of love I share with them. And Thanksgiving is the culmination of that contract, a culinary exhibition of skills learned over the years.

As I sit in my new kitchen, surrounded by delicious smells and delightful memories, I realize that I’ve finally learned the recipe for a happy Thanksgiving: start with low expectations, add lots of butter, and top the Jello salad with liberal amounts of love, preferably in the form of pineapple cream cheese custard.

My Mom’s Jello Apricot Salad
  • 2 small or 1 large package apricot Jello (peach will also work in a pinch)
  • 2 cups boiling water
  • 2 cups cold water

Make the Jello according to package directions. Add 2 sliced bananas and ½ bag small marshmallows. Let the Jello set.

Topping
  •       1 cup pineapple juice
  •       2 eggs
  •        1 cup sugar
  •        4 Tbs flour

Cook together until thick, stirring constantly with a whisk. Cool, then fold in 2 packages light cream cheese. Beat until smooth. Spread topping across the Jello. Then top with one package light Cool-Whip. Chill and serve with love.


Saturday, November 22, 2014

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.




Monday, November 3, 2014

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.

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.