Monday, August 24, 2015

Puer Natus Est

How Do They Grow Up So Fast?
The future president of Mars at the zoo, age 4

I dropped my oldest son off at college last weekend. All week, I had been busy planning for a semester start of my own, putting the final touches on my English Composition fall syllabus for first-year students, a class I love to teach because it opens students' eyes to the possibilities of writing, to the power of communication. And then, my phone buzzed with a text message from my son: “It is really hard to say goodbye to everyone.”

I remember that feeling.

Parenting is hard. This oldest child of mine, like all oldest children, was an experiment, a very wanted child, but also an unknown.  I was in graduate school when I learned that I was pregnant. I thought I would just deliver my first baby over spring break and return immediately to school a week later. He was born just six hours after I turned in my grades for the History of Rome section I taught as a UCLA teaching assistant, just six days after I successfully defended my academic work in comprehensive written examinations, struggling with Braxton-Hicks contractions as I labored (figuratively and literally) to translate difficult Greek passages and apply them to theoretical contexts.

For me, motherhood changed everything. Puer natus est, the Roman poet Virgil wrote in his 
Fourth Eclogue about the birth of Augustus Caesar, destined to be the first Emperor of Rome. “A child is born.” Is there a pronouncement more existentially profound?

My first child was obsessed with the space shuttle before he was two. He built rockets, first from Legos, then with real rocket fuel he cooked in my kitchen with sugar and cat litter. From an early age, he studied everything he could find about the Titanic, informing me as a preschooler that he would only watch documentary films, because “fiction is not true” (I beg to differ: sometimes it seems to me that fiction is more true than so-called facts).

When he was four, he swallowed a quarter because he wanted to know what it tasted like and earned his first (and last) ambulance ride. When he was 14, he broke both arms in a frightening parkour accident: My first and most urgent question to the emergency room doctor: “How is he going to wipe his own bum?” His younger brother had been in the same emergency room just two weeks earlier, transported by ambulance after a violent behavioral episode associated with mental illness.

I did not follow the plan and return to graduate school the week after my oldest son was born. I stayed home for 12 years to raise him and his 3 siblings. Nor did I plan on his father divorcing me. But when that happened, I gradually picked up the pieces and moved on. A few years later, I started an online doctoral program in Organizational Leadership (my kids describe what I study as “Advanced Manipulation Techniques”), and now, as my first son prepares to start his first year of college, I am preparing to defend my own doctoral dissertation proposal on mental health advocacy and leadership. We put many of our personal goals on hold when we become parents, but I'm glad I've returned to mine.

The family jokes that my oldest son is the future president of Mars. It might not turn out to be a joke. He certainly has the drive, the talent, the ambition.

But in so many ways, I feel like I have failed him.

His younger brother’s struggles with then-undiagnosed mental illness, coupled with a difficult divorce, defined our family in ways that I wish, as a writer, I could revise. Mental illness affects the whole family, and I think the sibling experience has not yet been adequately chronicled or supported.

And at age 18 as commencement speaker at his high
school graduation.
Still, as Dante said, we are a part of all we have met. My oldest son has met and conquered many challenges in his formative years, and I know that he will continue to achieve at a high level as he begins his college experience.

For my part, as I loaded up the Suzuki with boxes of his clothes and books and Star Trek models, I just wanted him to have fun. To be safe. And to learn to be happy.

Right before I left him to begin his new phase of life, I gave my son a journal inscribed with this message: 

“I’m not sure whether this means I’m a good parent or a bad parent, but I am really ready for this day—the day I officially get to hand your future off to you. I’ve watched you grow up to be brave, capable, and incredibly talented. Now is the time to be curious, to explore the world of ideas. I went to a relatively crappy college in a crappier town than your school, and I ended up loving every minute of it. The books I read in college are still my favorite books. The friends I made are still close. But most important, college made me the person I am today. Be curious.
P.S. Keep a journal! You’ll laugh really hard at what you wrote when you’re my age.”
As I turned to walk away, my cheeks were wet with tears. I blamed the moisture on the smoky air from all the Idaho wildfires. But my son and I both knew differently. His future is now his.

Tuesday, August 18, 2015

The Power of One

How a Single Juror Made All the Difference to Families of Children who Have Serious Mental Illness

Like many Americans, I held my breath on Friday, August 7 at 5:00 p.m. as I waited for the verdict to be read in the James Holmes case. No one questions that Holmes shot up a movie theater in 2012, killing 9 innocent victims and injuring 70 others. And few question that Holmes met Colorado’s legal definition of sanity when he committed this violent act. Similarly, few question that Holmes suffered from schizophrenia, an incurable mental illness with sometimes violent behavioral symptoms.

The only question in that moment for parents of children who have serious mental illness, parents like me, was this: would Holmes be sentenced to death for behavioral symptoms of a brain disease?

One juror found that outcome to be unacceptable. One juror saved James Holmes’s life.

And while the Internet swirled with hateful comments, mothers across America breathed a collective sigh of relief. Three of these mother wrote letters to the lone juror and shared them with me.

Leisl Stouffer of Bold Faith Ministries has watched her son’s dramatic improvement with residential treatment, something few parents can access. She wrote this to the lone juror who had the moral courage to save James Holmes’s life:
I will never forget the morning I woke up to “Breaking News.”  A movie theater. A gunman.  
Carnage. Death. Slowly the details emerged as we all sat in shock over the latest mass shooting. And then the media showed us his face. James Holmes. The cold blooded killer with the bright orange hair.   
But I saw more than his hair.  I saw the look on his face. I saw his eyes, and I was rocked to the core. 
That empty, faraway look.  Glazed over. No emotion. They say the eyes are the window to the soul. This man’s eyes revealed a look into his mind.  An abyss of darkness.  A chasm of illness. 
Mental Illness. 
I had seen that same look in my own home.
Laura Pogliano’s story was profiled in a USA Today series on caring for children with mental illness  in November 2014. Then, she called herself a “fortunate mother” because despite the enormous financial costs of obtaining care, she had been able to get treatment for her son Zac. Just a few months later, Zac died at the age of 23 of heart failure. Laura wrote this to the lone juror:
When the final sentencing verdict was read, I cried. Instead of the death penalty, Holmes was given life without the possibility of parole.  A juror spokesman related afterward that a single juror refused the death penalty as an option.  One out of seventeen. This lone juror’s refusal to put Holmes to death is probably the only reason Holmes was spared. 
My son was seriously mentally ill with paranoid schizophrenia for seven years before he died at age 23 of heart failure. If I could say anything to the Lone Juror, here’s what I would tell him or her: 
Thank you for sparing James Holmes’s life. By refusing to agree to the death penalty, you reminded us all of some important things we used to know as a nation but seem to have completely forgotten in the last 40 years.We have forgotten that treatment matters more than any single thing in a desperately ill person’s life. We evolved into a culture where it’s okay to ask for help with any disease except mental illness. With every mass shooting that we trace to untreated mental illness, with neighbors and friends all saying they saw a need for help, we grow more and more callous to the idea of treatment. 
The national chorus after a tragedy is, “why didn’t he get treatment?” By refusing to put James Holmes to death, you reminded us that he could have been saved by treatment. And you’ve shone a light on the very real deficits this country faces with our broken mental health system and very real barriers to care. Thank you for shining this light.
Diana Mandrell’s daughter also has a serious mental illness. Her family has struggled for 15 years, trying without success to find effective treatment for her daughter’s psychosis. Her daughter is currently on probation for misdemeanor assault. The family has been told their daughter must commit another crime before she can be committed to a hospital and get treatment.
I am the mother of a child who has serious mental illness, and I wanted to thank you for allowing James Holmes’ parents to keep their son alive. I know the pressure must have been very hard on you to vote for the death penalty, and I want you to know that I think you made the right decision. I know that what James Holmes did because of his disease was horrible, and my heart goes out to the victims and their families, but I also know that James and his family are also victims. They are victims of a mental health care system that is not only broken, but shattered. I know from experience that it is almost impossible to get treatment for patients with mental illness who cannot recognize their own illness. In this case, the fact that James did know and tried so desperately to get help shows that the system is even more broken than one might think. 
These parents’ stories are not uncommon, yet in the wake of Holmes’s sentence, many people attacked the brave juror.  People also continued to blame James Holmes’s parents. As parents of children who have serious mental illness, we are distressed that two-thirds of the jury apparently thought death was an appropriate sentence for a young man who had schizophrenia and acted out his awful delusions. We are profoundly grateful to the lone juror who stood up for what she believed in—that death is not an appropriate punishment for someone who has a brain disease. And we have hope that Congress will take action and pass HR2646, Representative Tim Murphy's much-needed mental healthcare reform legislation, before the next Aurora. Or Chattanooga. Or Lafayette. 

But mostly, we hope for meaningful change before another one of our precious children becomes homeless, or is jailed, or dies by suicide because of an untreated brain disease. These are the private, everyday tragedies of mental illness, tragically overshadowed by the rare and awful mass shootings that raise awareness but also contribute to fear and discrimination. We can each be the lone juror, speaking up for help and hope for the most vulnerable within our communities.

The mothers' full letters are reprinted here, with the authors’ permission:

To The Juror Who Spared James Holmes’ Life:

Thank You. Thank you for your willingness to sit on a jury in such an emotionally charged and high profile case.  Thank you for taking time away from your family and your life to serve justice. But most importantly thank you for standing firm in your convictions to spare James Holmes’ life.

In a case as horrific as this, it would be easy to say that the only true justice is death.  It appeared to be cold blooded murder. Lives were lost.  Lives were destroyed.  Dozens of families will never be the same.  The aftermath is unthinkable.  

Our human response is to call for vengeance.  

A life for a life equals justice.

But from where I’m sitting, I see things differently. 

I will never forget the morning I woke up to “Breaking News.”  A movie theater. A gunman. Carnage. Death. Slowly the details emerged as we all sat in shock over the latest mass shooting.

And then the media showed us his face. James Holmes. The cold blooded killer with the bright orange hair.  

But I saw more than his hair.  

I saw the look on his face.

I saw his eyes and I was rocked to the core.

That empty, faraway look.  Glazed over. No emotion. They say the eyes are the window to the soul. This man’s eyes revealed a look into his mind.  An abyss of darkness.  A chasm of illness.

Mental Illness.

I had seen that same look in my own home before.

I am the mother of a 17-year-old son who suffers from severe mental illness.  We have been battling this horrific and devastating disease for almost his entire life.  He is currently living in a residential treatment center where he is doing well and regaining his health, his dignity, and his life.  He used to have that faraway look in his eyes.  We had lost our son to the illness. 
But now, with treatment, he has life in his eyes.  He laughs.  He smiles.  There’s a twinkle. 

There is hope.

When I saw the image of James Holmes flash across my television screen, I did not see a cold blooded killer.  I saw a young man just like my son.  A young man who was unimaginably sick. 

I certainly do not condone his acts or the horrific crimes that were committed, but I saw James Holmes as a victim in this too.  He is a victim of a terrifying and gravely misunderstood illness.  He is a victim of our nation’s failed mental health care system.  This system refuses to provide treatment until the person is deemed an “imminent danger to self or others.”  By that point, it’s too late.  

I don’t know why you decided to spare James Holmes’ life but I am thankful you did.  The few articles and news stories I have seen report that the issue of mental illness played a significant part in your decision.  If that is indeed the case, thank you.  From the bottom of this mother’s heart, thank you.

We will never get back the lives that were lost, and for the victims and their families, life will never be the same.  But because of you, another life was saved. 

My heart goes out to everyone involved in this devastating tragedy.  If we want real justice, then let’s start by fixing our mental health care system.  That will bring real change.

Love and blessings to you, the Juror who spared James Holmes’ Life.  I am grateful. 

Leisl Stoufer

***
Dear Juror:

Like many parents of a child with mental illness, I waited with suspended breath for the verdict in the James Holmes murder trial. Holmes was found guilty of murder on all counts. He was not found “not guilty by reason of insanity,” but guilty, legally sane, meaning Holmes qualified for the death penalty in Colorado. The jury did not find enough mitigating circumstances, even though he has schizophrenia, to outweigh the evidence that he was legally sane at the time of the shooting.  This wasn’t good news for Holmes. The final phase of sentencing would include victim testimony, and then the jury would retire again for this final phase, to decide if Holmes deserved the death penalty.

When the final sentencing verdict was read, I cried. Instead of the death penalty, Holmes was given life without the possibility of parole.  A juror spokesman related afterward that a single juror refused the death penalty as an option.  One out of seventeen. This lone juror’s refusal to put Holmes to death is probably the only reason Holmes was spared.

My son was seriously mentally ill with paranoid schizophrenia for seven years before he died at age 23 of heart failure. If I could say anything to the Lone Juror, here’s what I would tell him or her:

Thank you for sparing James Holmes’s life. By refusing to agree to the death penalty, you reminded us all of some important things we used to know as a nation but seem to have completely forgotten in the last 40 years.
With over one million seriously mentally ill men and women in our prisons, we forgot that being mentally ill isn’t a crime. We forgot that mental illness comes with behaviors we don’t like, but which are driven by illness. We forgot that a person’s deeds sometimes aren’t “himself.” We forgot that being mentally ill isn’t a moral issue. Mental illness is just that: illness. We used to know it was illness, treat it as illness, “believe in it” as illness. Mental illness is real. Untreated mental illness can be debilitating, progressive, ruinous. Thank you for reminding us of this.

You reminded us that all people have value, intrinsic value; not just the value we assign them by how much they contribute to the economy. You reminded us that as a nation, we used to think of ourselves as a compassionate, human rights-oriented people. We understood that many people with mental illness could not fend for themselves, support themselves, care for themselves. We understood that while we couldn’t cure it, we could provide benevolent, long term solutions, like custodial care for those most affected. We used to know that people who were sick deserved treatment and weren’t social outcasts for asking for it. We used to know that even chronically sick people, now our homeless population, have value. Thank you for reminding us that all people have value.

We have forgotten that treatment matters more than any single thing in a desperately ill person’s life. We evolved into a culture where it’s okay to ask for help with any disease except mental illness. With every mass shooting that we trace to untreated mental illness, with neighbors and friends all saying they saw a need for help, we grow more and more callous to the idea of treatment. The national chorus after a tragedy is, “why didn’t he get treatment?” By refusing to put James Holmes to death, you reminded us that he could have been saved by treatment. And you’ve shone a light on the very real deficits this country faces with our broken mental health system and very real barriers to care. Thank you for shining this light.

What you reminded us of as a nation by refusing to send James Holmes to his death is that our justice system, often described as broken and corrupt, works once in a while. You reminded us that Justice should be tempered with Mercy, that our best legal precepts still work: Innocent until proven guilty, mitigating circumstances, punishments that fit the crimes.  We used to know that justice was separate from revenge. This is an important lesson.

Finally, we have forgotten that one person can make a difference. One person’s vote can alter nearly impossible circumstances; it can defy the odds and create change. One person’s refusal to do something that is against his moral judgment can matter more than 16 other people’s wrong opinions, or ten thousand’s. You showed us that in our best incarnation of ourselves as Americans, we used to believe this: One person can make a difference.  One vote can make a difference. Thank you for reminding us of this truth.

From the mother of a beautiful son who was stricken with paranoid schizophrenia, the same disease that James Holmes has, thank you. I know you would have done the same thing for my son.

Laura Pogliano

***
Dear Juror:

I am the mother of a child who has serious mental illness, and I wanted to thank you for allowing James Holmes’ parents to keep their son alive. I know the pressure must have been very hard on you to vote for the death penalty, and I want you to know that I think you made the right decision. I know that what James Holmes did because of his disease was horrible, and my heart goes out to the victims and their families, but I also know that James and his family are also victims. They are victims of a mental health care system that is not only broken, but shattered. I know from experience that it is almost impossible to get treatment for patients with mental illness who cannot recognize their own illness. In this case, the fact that James did know and tried so desperately to get help shows that the system is even more broken than one might think. 

I stand with his parents and the parents of all people who have mental illness in the United States. We are trying desperately to help others understand the need for treatment before these tragedies happen. I am grateful to you for allowing James Holmes’s parents to escape the horror of knowing their son would be put to death because of his illness. I honestly believe with all my heart that this tragedy could have been prevented if someone would have listened and helped him to get the treatment that he so desperately needed. I am forever grateful to you for standing your ground and voting your conscience, for whatever reason, and for allowing his parents to keep their son alive. You made the right decision. Thank you from the bottom of my broken heart.

Diana L. Mandrell








Tuesday, August 4, 2015

Never Give Up Hope

The Price of Silence: A Mom's Perspective
on Mental Illness, is now available in
paperback.
Six Lessons I Learned in My Ten Year Quest for Treatment

In December 2012, after a tragic school shooting in Newtown, I thought I was the only mother in America who asked myself, “What if that’s my son someday?” It turns out I was far from alone. Every single day since I shared my family’s struggle in a blog post, “I Am Adam Lanza’s Mother,” nearly three years ago, at least one parent has reached out to me with a similar story of trying to get mental health care in a broken and fragmented system. I wanted answers—not only for my son, but for millions of other children and families who are struggling. As I researched the problem for my book, The Price of Silence, I also found some answers. These are six things I learned during my family’s long and painful journey toward treatment and hope. 

1. Speak up. You are your child’s most powerful advocate. Too many parents of children who have mental illness suffer in shame and silence, or are even in denial about their child’s illness. If your child is very young and exhibits behaviors that seem abnormal—frequent night terrors, excessive tantrums, or sensitivity to noise, for example—talk to your pediatrician, and ask for a referral to a specialist. If a medical professional tells you, “Oh, he’s just a boy,” or “She’ll grow out of it,” get another opinion. If your adolescent comes to you with mental health concerns, always take them seriously. More than 4,600 young people ages 10-24 die by suicide each year.

2. Find support and resources. Your local NAMI or Federation of Families can be a great place to start. Organizations like ChildMind.org, AtWitsEnd.org, and Understood.org connect parents with information and resources as well. Finally, Facebook groups can provide comfort and a safe space to share your challenges with people who understand. To protect their members, many of these groups are secret, but you can message me, and I’ll connect you.

3. Explore multiple treatment options. While medications are an important tool in treating mental illness, they don’t work the same way for everyone, and some have serious side effects. Educate yourself about the risks and benefits, and work with your child’s doctor to identify the most effective treatments. Many children who have mental illness also benefit from other therapies. Young children might do well with Parent-Child Interaction Therapy. Applied Behavior Analysis has been successful with children who have autism. My son benefits greatly from traditional psychotherapy, which helps him to manage the anxiety he feels because of his bipolar disorder, and from occupational therapy, which helps him with his sensory processing issues. And his smart phone has also been a useful tool for him, helping him with everything from medication adherence to stress management.

4. Work with your child’s school to ensure that he or she has educational support. Children who have mental illness, especially those who live in poverty, are too often shunted into a school-to-prison pipeline that denies them a meaningful future. Your child has the right to a free and appropriate public education. The school district should work with your child to provide accommodations and supports that will enable your child to learn and develop. Note: special education can be baffling for parents. I recommend a consultation with a disability rights attorney or professional special education advocate who can walk you through the process.

5. Take care of yourself. Caregivers of children with mental illness report stress levels similar to combat soldiers. It can be hard to manage the financial stress of costly therapies and complex treatment schedules. In fact, respite care is one of the services that parents most frequently report they need. Take time for yourself every single day, even if it’s just a 15-minute walk or a few minutes to journal. It will make you a better caregiver for your child.

6. Never give up hope. When I shared my family’s story after the Newtown tragedy, I felt helpless and hopeless. But because I spoke up, my son got the help he needed. He has not made any threats of harm to himself or others for more than two years, since his last hospitalization in May 2013. He is back in a mainstream school earning good grades, and he just finished writing his third novel. Most important, my now 15-year-old son has really taken charge of his illness and is becoming a powerful advocate for himself and for others. When we accepted a joint advocacy award from Idaho Federation of Families in 2013, he said this: “I’m not a politician. I don’t give speeches. But I do know this: The stigma and discrimination against people with mental illness has got to end.”

It took us ten years to find the right treatment. And our story is not over. I do not think that anyone would say that a diagnosis of bipolar disorder is a “happy ending” for a child. But it is an answer, and it provided a path for us. As we follow that path, I have every hope that my son will live the happy, productive life that he—and every child—deserves.  

Friday, July 17, 2015

To the Parents of James Holmes

The World May Blame Your Son, but We Know the Truth, and We Support You
10 million children will grow up to be adults who have
serious mental illness like James Holmes. Like our children. 


Twenty doctors agree that James Holmes has schizophrenia, a mental disorder that has been described as “young person’s dementia.”   But the fact of his illness did not prevent Colorado jurors from finding the young man, who opened fire in an Aurora theater in 2012, guilty of 24 counts of murder in the first degree, two counts for each victim.  After the verdict, a girlfriend of one of the victims declared, “This is a huge step forward.” 

The shooting was truly awful, and the grief and even anger of the victims’ families is entirely comprehensible. But the parents of the ten million U.S. children with serious mental illness, children like James Holmes, feel differently. We see the verdict as a huge step backward, a clear message that the stigma and discrimination associated with mental illness is as strong as ever, and that the public’s fear and ignorance of mental illness have not abated since 2012.

Mass shootings are incredibly rare, representing only two percent of all gun violence in the United States. Yet the daily tragedies—incarceration, homelessness, suicide—that disproportionately affect our children who have serious mental illness do not make the headlines.

In December 2012, after another mass shooting involving a young man who likely had serious mental illness, I wrote an essay sharing my own family’s struggles to find mental healthcare for my then 13-year old son. The essay, “I Am Adam Lanza’s Mother,” became a rallying cry for mothers who had tried and failed for years to find treatment that worked for their children.  As a result of my cry for help, my son was diagnosed with bipolar disorder and got treatment that works. Today, he is in a mainstream school earning good grades, hanging out with his friends, and planning for college. With treatment, my son is no more likely to be violent than anyone else.

In the wake of the Newtown tragedy, I was also able to connect with a passionate community of mental health advocates. Eight of these mothers, all powerful advocates in their own right, wrote letters to Robert and Arlene Holmes.  Here is some of what they shared:

Last summer my 12-year-old daughter Morgan was charged with the crime that would be dubbed by the media as the “Slender Man Stabbing.” One moment she and her two best friends were eating donuts at my kitchen table. The next moment, she had been charged with a crime of unimaginable violence, and was torn suddenly and unexpectedly from my home. You have expressed feeling guilt for not knowing your son had mental illness. I know how that feels. I didn't know that my daughter was sick, either.—Angie Geyser

We managed to keep our son out of the criminal justice system until 2012. He does not think he has a mental illness even though he has spent the majority of his adult life in locked psychiatric facilities. Today he sits in jail awaiting a bed in a state hospital. We all believe in treatment before tragedy!—Teresa Pasquini

It wasn’t your beautiful son who hurt all those people.  It was the untreated brain illness that is so misunderstood.  It is my hope that we can educate people to understand that people with schizophrenia are not evil; they are ill. —Kathy Day

More children in this country die by suicide than cancer, diabetes, and every birth defect combined, but somehow, trying to keep our son alive was considered “bad parenting.” We learned that our son’s illness is in his brain, not in his upbringing. We could have so easily been where you are.—Tom and Chrisa Hickey

I hope your son is judged with compassion and given the help and care he needs. I also hope you know that you are not alone in this. We have a community of parents and caregivers of those with serious mental illnesses, and we care and support each other.
—Marcie Bitler Sohara

Our son was an adult now, and his right to have irrational thoughts flying loose in his mind were supported by maladaptive laws written in the 1960s that make one thing crystal clear: after age 18, our boy would have to present as a “danger to self or others” if he was ever going to be returned to a safe residential facility. The deinstitutionalion experiment has cost countless lives; families have lived with personal tragedies of lost loved ones for decades without anyone taking notice. Only when our sick kids explode in the community do people share an opinion. You are not alone. —Jennifer Hoff

Please don’t blame yourself. It’s not your fault; it’s not your son’s fault; it’s not your husband’s fault. It’s your son’s brain disease. It’s our broken mental health system. It’s the lack of funding to find a cure and lack of education to each school administrators, family members, judges, law enforcement, and lawmakers. —Marla Durkin-Pope

My hope for you both is that you find comfort and kindness in those of us who, even in a small way, understand and empathize with the experience you now have to go through.  We wish you could have known earlier that there were people much like you, struggling to find answers, comprehend, and keep ourselves afloat. —Jenifer and Jim Walsh


Their letters are reprinted in full with their authors’ permission below.

***

Dear Robert and Arlene,

We want you to know that you are not alone. There is an entire community of parents who understand and support you. We are the mothers of children who have been diagnosed with serious mental illness. Some of our children have committed violent crimes, and some of us simply understand how these tragedies can occur as a result of a brain disease.

Last summer my 12-year-old daughter Morgan was charged with the crime that would be dubbed by the media as the “Slender Man Stabbing.” One moment she and her two best friends were eating donuts at my kitchen table. The next moment, she had been charged with a crime of unimaginable violence, and was torn suddenly and unexpectedly from my home.

You have expressed feeling guilt for not knowing your son had mental illness. I know how that feels. I didn't know that my daughter was sick, either. She was only diagnosed with schizophrenia after being declared incompetent to stand trial and being evaluated at a state psychiatric facility. I feel as though my guilt for not knowing Morgan was sick will forever consume me from the inside out.

Please do not hesitate to reach out to us for support. If you feel uncomfortable doing that, please know we all hold you close to our hearts.

Angie Geyser

***

Dear Mr. and Mrs. Holmes,

I am the proud mom of a 32-year-old adult son who has a 16-year history with serious mental illness. He was diagnosed at the age of 16 with bipolar disorder following his first hospitalization. He has been involuntarily hospitalized over 50 times. His diagnosis has changed to schizoaffective disorder. He suffers from a lack of insight, which is called anosognosia. He does not think he has a mental illness even though he has spent the majority of his adult life in locked psychiatric facilities.

We managed to keep our son out of the criminal justice system until 2012 when he was arrested while on a hospital unit at Napa State Hospital in California and charged with assault. He has been deemed incompetent to stand trial four times. Today he sits in jail awaiting a bed in a state hospital.

In May 2015, I travelled to Washington DC to speak on Capitol Hill about my family’s tragedy. I joined families from across the nation who refuse to be silent and let our families and communities continue to suffer. We all believe in treatment before tragedy!

Your son and your family are in my heart and thoughts. We are with you, and you are not alone.

My best,
Teresa Pasquini

***

Dear Mr. and Mrs. Holmes:

My family member suffers from schizoaffective disorder with constant psychosis. There’s just something about psychotic illnesses that make us all feel alone.  It’s so isolating.  In James’s case, it’s worse because his illness impacted so many others. The system should have provided treatment to him to prevent tragedies that happen too often.

I’m so thankful that my family member has not hurt anyone--yet.  But for the last four months, he’s mostly stayed in his room.  He lives in fear every day because his “spirits” constantly threaten his life.  I can’t leave him alone at times, because his fear of being killed is so great.  I worry that these spirits will cause him to act out and hurt himself or someone else.  I know that my loved one could experience what your son’s illness did to him.

I’m fortunate because he lives with me.  I can keep an eye on him and am aware of changes that could be red flags.  You weren’t in the same town, let alone the same state as James.  There is no way you could have known what his illness was planning.

And that’s just it.  It’s the illness that controlled him.  It wasn’t your beautiful son who hurt all those people.  It was the untreated brain illness that is so misunderstood.

I hope James gets the treatment he needs and deserves.  And I hope you both can have some peace.  You hear some very ignorant statements about your son.  It is my hope that we can educate people to understand that people with schizophrenia are not evil; they are ill. 

I’m sending good thoughts to you and your family.  I hope you know that you are not alone, and there are many of us who would welcome you!

Sincerely,

Kathy Day

***

Dear Robert and Arlene:

People look at me cross-eyed when I say we're lucky my son Tim was diagnosed with schizophrenia as a child. 

He was 11 when we first got the diagnosis, the last in a long line of them, from autism to speech disorders to depression and bipolar disorder. He was in a psychiatric hospital when he was diagnosed, after a suicide attempt that forced us to acknowledge he was sick.  Three years and 11 hospitalizations later, we made the agonizing decision to put Tim into long-term residential treatment because he was so delusional and so violent that we feared for his safety, our safety, and the safety of our other children.

We were alone then. We were accused of filling him with poisonous medication because we didn't feel like creating structure or enforcing rules. Strangers cursed us when he had a meltdown in public. Acquaintances felt justified in beating their breasts and declaring they would never send their children away. More children in this country die by suicide than cancer, diabetes, and every birth defect combined, but somehow, trying to keep our son alive was considered “bad parenting.”

In residential treatment, Tim learned what it was like to live without the voices. And since he was still a child, we were able to ingrain in him the importance of his meds and therapy to keep the voices at bay. We learned that our son’s illness is in his brain, not in his upbringing. He's 21 now.  He can never be left alone for more than an hour, or his anxiety and paranoia kick in.  He takes his meds, and today, they are working.

But I remember watching him being frisked by the sheriff we had to call after he broke every door in the house and threatened to kill us. There's a razor thin line between that day and today. We spend every day staving off a return to that day.  We know we're lucky to have the opportunity to do so. We could have so easily been where you are. 

We will continue to keep you in our prayers. 

Tom and Chrisa Hickey

***
Dear Robert and Arlene,

I have a 26 year old son who has been diagnosed with paranoid schizophrenia. He was only 19 when he had a complete break with reality, and we were able to get a diagnosis. I have been luckier than most because he knew something was wrong, and we were able to get help; however, I am fully aware that might not have been the case. I tell you this because I want you to know that the pain and the suffering you and your son are going through are always on my mind.

I know that the seriously mentally ill are operating with a sick brain, and your son’s actions were due to that sickness. I hope your son is judged with compassion and given the help and care he needs. I also hope you know that you are not alone in this. We have a community of parents and caregivers of those with serious mental illnesses, and we care and support each other. I hope you can find us and take some comfort in knowing you are not judged by us.

Sincerely,

Marcie Bitler Sohara

***

Dear Arlene and Robert,

I want to thank you for speaking up in response to the “evil” and “monster” taglines used liberally by the media towards your son James. Thank you for being brave enough to endure people spewing anger and hatred towards you as you attempt to educate our nation on the painful reality that serious mental illness can be fatal if left untreated and how a devastating psychiatric diagnosis like schizophrenia can wreak havoc on an individual’s life, stealing the ability to reason and decide rationally and potentially leading to tragic outcomes.

I cannot imagine how you must feel as parents, going through the courtroom experiences when what your son really needs and deserves is to be in a psychiatric hospital. I understand personally about losing an adult child to an illness that steals his mind and free will, and I know what it is like to watch helplessly as people judge and condemn your child for behaviors resulting from a brain that is too sick to understand the consequences.

My 22-year-old son is mentally ill and spent the majority of his childhood and all of his adolescence in clinical day programs or locked residential facilities “for safety.” Despite the fact that he was disabled, receiving SSI, and was never was never able to manage his life in a safe manner, when he aged into adulthood, he received his shoe laces back and a plane ticket “home “and free reign to manage his life completely without “interference from his parents” (his case manager’s words).

Within months of returning home, he had multiple run-ins with the law, several psychiatric hospitalizations, and he was kicked out of two group homes. We begged our county health department to put him in a hospital. We presented 500 pages of medical records and his doctors’ letters advising he be reinstitutionalized for treatment of his illness. This meant nothing to Orange County. Our son was an adult now, and his right to have irrational thoughts flying loose in his mind were supported by maladaptive laws written in the 1960s that make one thing crystal clear: after age 18, our boy would have to present as a “danger to self or others” if he was ever going to be returned to a safe residential facility. There was nothing his father and I could do but watch helplessly as he was consumed by the revolving door.

He went missing for days at a time, and started smoking pot and drinking often. We were constantly worried, not only of what would happen to him but also about collateral damage that might be inflicted in the community. Less than 36 hours after his last release, he walked into Bank of America with a threat scribbled on a sticky note to blow up the place if the teller didn’t hand over a thousand dollars. He will spend the next 13 years in the California State Prison. He has spent many months in solitary confinement and now has “Crazy Boy” literally tattooed across his young face; despite this, he has been denied his psychiatric medicine because he is not “sick enough.” in other words, we have to wait until his mental state declines even more before he qualifies for his psychiatric meds that he has taken since age 12.

Our jails have become hospitals, but they use pepper spray instead of a syringe. Nearly percent of prison inmates have a serious mental illness. The deinstitutionalion experiment has cost countless lives; families have lived with personal tragedies of lost loved ones for decades without anyone taking notice. Only when our sick kids explode in the community do people share an opinion. You are not alone. I am praying for everyone who has been impacted by our broken mental health system and for treatment for James.

Kindly,

Jennifer Hoff

***

Dear Robert and Arlene,

I have a 30-year old daughter who has been sick since high school. When her problems first started, we took her to psychologist who diagnosed her with “normal teenage defiance.” For ten years, no one knew what was going on in her beautiful sick brain. They call it “presenting well.” In secret, she sees aliens, a FBI informant, the Messiah, and I can go on and on. Finally, after ten years, her illness got so bad that other signs related to schizophrenia became apparent.

It took three misdiagnoses from professionals and education on my part to really grasp what was going on when those external signs started to become apparent. Please don’t blame yourself. It’s not your fault; it’s not your son’s fault; it’s not your husband’s fault. It’s your son’s brain disease. It’s our broken mental health system. It’s the lack of funding to find a cure and lack of education to each school administrators, family members, judges, law enforcement, and lawmakers.  

There are many parents like you out there who support you, love you, and will be there in spirit with you every day in that court room! Please come to our groups on Facebook. You have a support system of loved ones whose family members have a brain disease like your son. Become advocates. You have the support to fight for your son’s life, and his life matters!

Hugs!

Marla Durkin-Pope

***

The bravest are the most tender – The loving are the daring. –Bayard Taylor

Dear Robert and Arlene,

Underneath the sullen and distant fa├žade lies the heart of a sweet young man.  Our son longed to be free. 

At the tender age of 13, our son attempted to end his life so that he would no longer be tormented by the voices, commands and “Book” in his head that told him to do things.  Our son struggled with violence at home, epic meltdowns, running away, isolation, threatening suicide constantly, and enormous anxiety and paranoia since age 7.  I read more than I ever thought I could read.  I was mocked by psychologists and condescended to by psychiatrists, until my son’s suicide attempt resulted in a diagnosis of early onset schizophrenia. 

When he had his psychotic break, he spent 42 days in a behavioral health hospital, where he was finally put on the last resort medication.  We are grateful and fortunate that it is working for him and keeping the suicidal ideation and hallucinations away.  We also know the damage that has been done to our family.  Another of my sons has a serious mental illness as well.  We struggle.

My hope for you both is that you find comfort and kindness in those of us who, even in a small way, understand and empathize with the experience you now have to go through.  We wish you could have known earlier that there were people much like you, struggling to find answers, comprehend, and keep ourselves afloat.

Brene Brown shared “Empathy’s the antidote to shame: The two most powerful words when we’re in struggle: me too.”

Your family is in our prayers.  Please let yourselves be supported.

With love,

Jenifer and Jim Walsh


Monday, June 29, 2015

Family Values

Lessons from two very different flags

Our family is complicated. Like many other Americans, my second husband Ed and I are both divorced from our first spouses. Ed has no children of his own and thinks that “our” four (plus our very lively cat) are more than enough. My children’s father has also remarried, so my children have step-siblings and a half-sibling to add to their postmodern family tree. We are all white and middle class, and we live in one of the most politically conservative and the least racially diverse states in the nation: Idaho.

One of the biggest challenges of raising children after a divorce is navigating the space between very different sets of parental values. My younger two children are being raised in a faith tradition that historically discriminated against blacks and that continues to prescribe rigid gender roles.  I support their father’s decision to take them to the Mormon church because I don’t think religion is worth fighting about, and because my own Latter-day Saint parents managed to raise children who were respectful and tolerant of others. But I cannot remain silent about my values, even when they conflict with what my children learn in church.

In light of a landmark week for gay rights and racial discrimination, I asked my children what they knew about two very different flags. “A flag is a symbol,” my 11 year old told me. “It represents a country or an organization.” As we talked about the Confederate flag, I asked them what it symbolized. “Isn’t it the Civil War or something?” my 10 year old daughter said. I explained that for many people, the flag was associated with slavery and oppression.

“But didn’t Dr. Martin Luther King fix all that?” my daughter said. “I thought he made it so that black people and white people were equal.”

White people say things like this all the time. They say, “Oh, we have a black president now, so we can’t be a racist country,” or “Oh, we have affirmative action policies, so white males are actually the victims of discrimination” (Yes, I have actually heard this phrase come out of more than one white man’s mouth).

If there’s one thing we’ve learned over and over again these past few years, from the Trayvon Martin shooting to the tragedy in Charleston, it’s that Americans are decidedly not “over” racial discrimination. As a parent of white children, it’s my duty to teach them to use their privilege to be allies to those who do not share that privilege. My children were shocked as I explained to them how black mothers and fathers were afraid for their teenage sons, because they could actually be shot and killed, just for being teenagers.  “That’s not fair,” my son said. “That’s not right.” Exactly.

Then we talked about another flag: the rainbow flag that symbolizes the LGBT pride movement.  The Mormon church, along with many other conservative Christian churches, has been and continues to be a vocal opponent of gay marriage.  I actually do feel some empathy for people who fear that their deeply held religious convictions are being challenged by last week’s Supreme Court ruling supporting gay marriage. But in listening to some of my conservative Christian friends, I think there’s a basic misunderstanding of what the ruling really means. No church is going to have to marry gay people. The decision does not at all impact their religious freedom, any more than the long overdue imminent removal of the Confederate flag from South Carolina’s state capitol impacts individual freedom of speech.

I told my children that I think the First Amendment is one of the things that makes America a great country. Every person who wants to display the Confederate flag on his or her front lawn or white Chevy pickup truck should unequivocally have the right to do so. But any person who wants to fly the rainbow flag should and must have that same right. The government should not sanction discrimination of any kind. And as a parent, I have the power to teach my children tolerance and respect for differences and to encourage them to speak up for those who are oppressed.

That’s one thing I have learned from my conservative Christian friends: We shouldn’t be afraid to share our values. In the end, no matter what your family looks like—black, white, gay, straight, or some combination of all of these—the love you share is what matters. Love wins.


Thursday, June 18, 2015

It's Time to Talk about Fear and Love

What do guns, race, and mental illness have in common?
Charleston shooting demands difficult conversations about guns, race, and mental illness

James Holmes was obsessed with Batman. Elliott Rodger thought all women hated him and he needed to exact revenge. Adam Lanza killed innocent first graders, an act that shocked the collective national conscience. Now, in a country already reeling from racial turmoil, mass shooter Dylann Roof has targeted black churchgoers. All of the shooters were described as “quiet bright boys” who became increasingly isolated in their teens.  For all of them, numerous red flags were raised.

In his national response to the tragedy, President Obama observed what many have been saying for years: “This type of mass violence doesn’t happen in other advanced countries.” 
That’s not entirely true: Norway’s 2011 massacre, the attacks on Charlie Hebdo in France, and the Germanwings crash show that other nations experience unpredictable and senseless violence as well. But Obama’s still-valid point is essentially the same one muckraker Michael Moore made in Bowling for Columbine (2002). There’s something different about guns and America.

Let’s look at what we know about gun violence.

Fact: Mass shootings account for only about two percent of all gun violence in the United States. In 2015, only 133 of 5,767 deaths caused by gun violence were the result of mass shootings. In fact, you are much more likely to die in an airplane crash than in a mass shooting event. 

Fact: Blacks are disproportionately affected by gun violence. Though blacks make up only about 13 percent of the U.S. population, 55 percent of all people who died by homicide in 2010 were black

Fact: To date in 2015, there have been 2,025 reported and verified shootings involving law enforcement. It is hard to know exactly how high this number is because the government does not track police shootings. The Washington Post has reported 385 fatalities this year so far; The Guardian 470. According to a Pro Publica study, young black men are 21 times more likely to be shot by police than young white men. 

Fact: Suicide completion is the second leading cause of death for people ages 15-34, with 41,149 deaths by suicide completion across all age groups in 2013. Almost 60 percent of deaths by gun violence are completed suicides; the vast majority (87 percent) of suicide gun violence victims are male.

Fact: Based on studies of mass shooters, about half of the shooters suffered from serious mental illness. But the most common form of violence associated with mental illness is self-harm; more than ten percent of people diagnosed with schizophrenia and 15-17 percent of people with bipolar disorder die by completing suicide.

President Obama acknowledged that gun control is not going to happen, not even when a Bible study group is gunned down by a young man obsessed with white supremacist dogma. That’s why it’s up to each of us to face up to what guns, race, and mental illness represent in America. The seemingly endless and unproductive debates are really about our fear. It’s time to change that conversation.

How do we solve the gun issue?

We all look in the mirror and admit that we are afraid to die. We acknowledge that we likely will have no control over the time, place, or manner of our deaths. Then we start living. As part of our commitment to overcoming fear, we educate ourselves, practice responsible gun ownership, and teach it to our children. (Also, we start tracking data about law enforcement and gun violence.)

How do we solve the race issue?

We all look in the mirror and say, “I’m human. So is everyone else, no matter what color his or her skin is.” Then we start to treat people the way we want to be treated. We hold doors open for people of all genders and races. We write thank you notes to each other and buy each other’s coffee in the drive through lines. If we’re white, we recognize that we have privilege, and we fight even harder for the rights of those who do not share that privilege.

How do we solve the mental illness issue?

We all look in the mirror and say, "Mental illness is not a choice or a character flaw." Then we end stigma and provide treatment. Mental illness is a costly public health crisis, in both financial and ethical terms.  U.S. Representative Tim Murphy has reintroduced his “Helping Families in Mental Health Crisis Act” with significant revisions that can help individuals, families, and communities to improve access to care. 

In the wake of mass shootings, I used to write about the need to provide treatment before tragedy. My new message is this: enough about tragedy. Let's focus on treatment. Treatment provides hope, and love overcomes fear.

The American writer Thomas Wolfe wrote, “To believe that new monsters will arise as vicious as the old, to believe that the great Pandora's Box of human frailty, once opened, will never show a diminution of its ugly swarm, is to help, by just that much, to make it so forever.” Let’s stop believing in new monsters and start hoping instead for an America that can overcome its fear—of guns, of race, and of mental illness. Today we may feel lost and hopeless and afraid. But as Nelba Marquez-Greene, a grieving mother who lost her six year old daughter to gun violence, said one month after her daughter’s senseless death, “We choose love. Love wins in Newtown, and may love win in America.” 
   
I'm betting on love.

Tuesday, June 16, 2015

Same Old Stigma

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

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

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

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

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

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

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

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