Dear Congress: If Mental illness Causes Mass Shootings, Put Your Money Where Your Mouth Is

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It’s easy to blame mental illness, but we fail to mention that treatment works and recovery is possible for many.

For mothers of teenagers like me, news about a school shooting never gets any easier. We experience the same dread, the same despair, the same fear that someone will attack our children’s school. In between mass shootings, we drill our children on what they would do. We check on their social media accounts. We try to pretend that there’s some sense of safety in a world that always seems full of random, unpredictable violence.

I’m the mom CNN used to call whenever there was a school shooting. And today, one day after 17 children who are the same age as mine did not come home from school because of another mass shooting, I’m angry. Predictably, politicians have tweeted meaningless “thoughts and prayers.” Also predictably, some Republicans have tried to shift the blame for the latest massacre to the isolated actions of a “mentally disturbed individual.”  

After the Sandy Hook Elementary School shooting five years ago, I shared my story of parenting a child with violent behavioral symptoms of a then-undiagnosed mental illness in a viral essay entitled “I Am Adam Lanza’s Mother.” In that essay, I wrote, “It’s easy to talk about guns. But it’s time to talk about mental illness.” 

Now, I’m concerned that we are having the same blame and shame conversation without any meaningful action, as this viral Facebook post shows.  

Today, with the correct diagnosis (bipolar disorder) and treatment that works, my son Eric lives in recovery. In 2016, he even gave a TEDx Boise talk about his experiences.  Eric is a normal high school senior who, like many of the Parkland, Florida students, is planning for college next fall.

Today, I feel that blaming mental illness for an epidemic of violence in the wake of so many mass shootings has become a meaningless trope. If politicians and the National Rifle Association really believe that mental illness causes mass shootings, it’s time to put their money where their mouth is. Here are a few suggestions:

1.       Provide funding for research into treatments and cures, perhaps by donating the millions of dollars that the National Rifle Association gives to their campaigns.  

2.       Continue to support parity for mental and physical health, currently required by the ACA but already under threat in my own state.  

3.       Stop blaming children and their parents for the appalling lack of community mental health services and supports.  

4.       Understand that when treated, people who have mental illness are no more likely to be violent than anyone else. Treatment works and recovery is possible.  

5.       Adopt reasonable and bipartisan gun control measures that focus on suicide prevention, since more than 60% of deaths by gun violence in the U.S. are completed suicides, a tragedy that disproportionately affects the brave men and women who serve in our military.  

Most people can agree that universal background checks and allowing the government to track gun violence statistics (currently prohibited by federal law) are good first steps to better understanding and controlling our nation's clear gun problem.

To be transparent, I live in Idaho, a gun-loving state. I grew up in a family that hunted, and my brothers taught shooting sports at Boy Scout camp. I have enjoyed shooting sports in the past. While I do not personally have guns in my home because of my son’s illness, I know many responsible gun owners, some of whom live in recovery. 

Yes, it’s true: people who have mental illness can be responsible gun owners, which is why mental health advocacy organizations including the National Alliance on Mental Illness believe that “Federal and state gun reporting laws should be based on these identified traits, not mental illness.”   

People who are in treatment for mental illness and are compliant with treatment should not be treated any differently than anyone else. To focus on mental illness as the sole cause of mass shootings is a clear example of the pervasive discrimination and fear in our society. In fact, while it’s true that at least one-third of mass shooters seem to have had an untreated mental illness, a more common predictor of this kind of violence is a history of animal abuse or domestic violence, as is the case with the Florida shooter. Both of these deplorable behaviors are actual crimes, and both of them should require immediate intervention including loss of gun rights.

But mental illness is not—and should not be—a crime.

It’s time to act.  Build the community mental health treatment centers. Fund research into cures. And most importantly, stop blaming by association the millions of good people who live in recovery for the violent actions of a few.

Use Your Voice! #BraveChat #FaceOfMentalIllness

This is a guest blog by super-advocate Jennifer Marshall of ThisIsMyBrave.org. Thanks, Jenn, for all you do and for letting me share this important social media campaign!

Jennifer Marshall, the #FaceOfMentalIllness

Every Halloween mental illness seems to be exploited and mocked for entertainment value and profit. Companies using horrible images of mental patients or mental hospitals, and even creating "costumes" depicting the outward wounds of dealing with mental illness. 

Thankfully, due to the work of countless dedicate mental health advocates, society is beginning to wake up. Over the past few weeks, offensive costumes have been removed from websites and shelves, Halloween attractions have been shut down, and people are being educated about the realities of what it is like to live with mental illness through stories shared.

And we're still able to celebrate and enjoy Halloween. 

But when the public has this image in their head of what mental illness looks like, we need to speak up.

Tonight during our weekly #BraveChat on Twitter, we're launching a campaign to change the perception of mental illness through photos. And we need your help!

Join us by sharing a photo of yourself with the hashtag #FaceOfMentalIllness. Or, if you don't do Twitter, you can still add your voice to the campaign by taking a selfie holding a sign that says:

This is the #FaceOfMentalIllness

and share it on Facebook or Instagram. Share a little about your story and why you feel it's important that we speak up. Be sure to tag us (@ThisIsMyBrave) so that we can re-share to amplify our voices. 

“You know this would never happen for other health conditions. You wouldn’t have a Halloween attraction about a cancer ward. It is mocking something that is a very serious illness.”— Mary Giliberti, Executive Director of NAMI to Washington Post

Use your voice and join us!

Success, Failure, and Perspective

One of my 2016 New Year's resolutions (okay, maybe my ONLY 2016 New Year's resolution, since the usual ones about losing ten pounds and being nice to people on Twitter never seem to work out for me) was to start publishing essays from guest bloggers. I made that resolution in part because I wanted to share this poignant and heartbreaking story from my friend Shauna Robinson, an extraordinary mother with a lovely, brave daughter. Both Shauna and Renae agreed to let me publish this story of Renae's descent into depression and how it affected her mom. We changed Renae's name at her request.

Also, I realize that it's now June--six months past my initial resolution to kickstart this blog. What does that say about me? I prefer to think that it says I always get around to the important stuff, as soon as I can. Those of you who know what's been going on in my personal life will understand.

If you have a story you would like me to share, please contact me on Twitter @anarchistmom or Facebook.  

Here's Shauna's powerful story of parenting a teenage daughter with mental illness.--Liza

Success, Failure, and Perspective

It can be hard not to feel like a failure when your child
is suffering, and you don't know how to help.

by Shauna Robinson

"It killed me inside to walk away from my child. I was desperate to keep her alive and find help for her to be happy again. All I have wanted for her was to be happy and alive."

I remember the moment as if it were yesterday.  In fact, I had been anticipating this exact point in time for just shy of a year and was so curious to see the little life that had been growing inside me, face to face. About a week prior to this day, she almost put her tiny foot through my stomach while stretching, in an effort to let me know she needed more space, so I knew she possessed some spunk.  My labor flew by before I even knew what was happening, and then all of a sudden, I held in my arms the most amazing creature I had ever laid eyes on.  

Nothing, and no one, could have ever prepared me for how I would feel as I gazed upon my baby girl for the very first time.  In a flash, I was flooded with so many emotions; I could not take my eyes off her slimy little face, and I could not keep the lid on my heart.  It burst and the tears poured down my cheeks; pure joy.  This little one in my arms had to be the most beautiful gift I had ever received, and certainly, her birth, the greatest success of my life. 

Renae (name changed) was born a redhead, but not that bright orangey red.  Her eyes were brown, her skin creamy, and her hair auburn.  When she had been in the sun all day, she would tan instead of burning like most redheads with fair skin.  I was always amazed at how perfectly God had put her together and blended all her colors.  From the first time she was able to hold a crayon in her wee little fingers she was a full-fledged artist.  Over the years, as she grew, she dabbled in several different mediums of art, including musical instruments.  I have loved everything she has ever created and enjoyed watching her blossom.  She grew into a lovely, kindhearted, creative, hilarious, talented, and feisty young teenager.  

Sometime during Renae’s 16th year of life, I started sensing that something had changed.  It was subtle, and I could not be sure I was sensing things correctly; so I would lie on her bed with her at night before she would go to sleep and talk with her about her day.  I enjoyed those moments together.  Occasionally, I asked her, “Is everything okay?  It seems like something is bothering you.”  

“I’m fine,” she would respond adamantly.  

I felt her pushing me away, and my heart hurt.  “Okay, honey.  I do not want to pressure you, but I want you to know that I am here for you if or when you want to talk about anything.  I love you so much.”  

“I know, mom,” she would reply.  This continued on occasion for about three months.  I knew something was wrong, but I could not force her to confide in me.  I could not figure out what had changed in our relationship.  We had been so close and could talk about anything.

One night my husband came to me and told me that he heard Renae crying in her bedroom. He went in and asked her, “What is wrong, honey?”  

She could not answer him because she was sobbing uncontrollably.  He thought she might be willing to talk to me. Unfortunately, that was not the case.  We lay there and I held her for an hour or more while she sobbed so hard she would begin to hyperventilate.  I kept holding her and coaching her to try taking a deep breath in order to help her calm down.  I felt so helpless, and was puzzled as to what could possibly have her so upset. Everything was great. She was a normal 16 year old junior in high school looking forward to her future—so I thought.  

The next day we began looking for a counselor so she might be able to talk about whatever it was that was bothering her so deeply. We interviewed a few before she found one with whom she felt comfortable.  She met with this counselor a few times before the counselor told me that Renae was severely depressed, and she thought it would be a good idea for her to see a doctor.  

I took her to the doctor, and they began to try her on various medications and various doses of those medications. Renae seemed to be getting worse instead of better.  In a matter of months, I watched a vibrant, creative young woman, who was only two years from beginning her life as an adult, sink deeper and deeper into a black hole. It was as if something had come along and sucked her very soul right out of her body.  There was no life left in her eyes. She would not talk to me.  I was scared.

During this time, I felt the extent of my own powerlessness.  The beautiful life I had brought forth into this world now threatened to be taken out and would exist no more.  My husband and I both lost hours and hours of sleep, our stomachs in knots. I would creep into Renae’s bedroom to make sure she was still breathing several times a night. I was going crazy. He was going crazy. Our days were spent researching every drug, depression, mental illnesses, talking to counselors, doctors, and psychiatrists. No one knew the answers to make our precious girl okay again.  No one knew what had happened; not even Renae could explain why she felt this sense of despair.  Nothing made sense.

Then one day, I received the phone call.  My stomach dropped as if I was on one of those rides at the fair that goes up high and then drops from 100 feet in the air.  Renae had plans to kill herself within the next couple of days, and she had a specific plan on how she was going to do it. In fact, she had two different plans. 

The next 24 to 48 hours were a blur.  Within that timeframe, we met with Renae’s counselor and we contacted a treatment facility that said if we could be there by 1:00 the next afternoon, they had a bed for her. This was a home-like atmosphere instead of a mental institution, but had the care for the specific things with which Renae was struggling. We packed her things, got in the motor home, and drove all night long.  The 12 hour drive was quiet and heavy. We arrived in the nick of time.  

Once we had toured the facility and talked with the admissions counselor and some of the girls who were living there, we felt this place was our best option to keep our daughter alive and get her the help we thought she needed but could not provide for her. Everything within me screamed, “NO!!!  This cannot be happening!  How did this happen?  How did we get here?”  

Renae was so angry.  She sneered at me. I had gotten in the way of her plans to die, and now, I was going to abandon her when I had always been there for her. My husband, our son, and myself all wrapped our arms around Renae, hugged her tight, and we all cried.  Renae stood there, hard.  We told her we loved her and said we would be back when we could visit, then began to walk towards our vehicle. She cried in a barely audible voice, “Don’t leave me here. Please don’t leave me here.”  

As we kept walking she grew more and more desperate to change our minds, but we could not.  It killed me inside to walk away from my child. I was desperate to keep her alive and find help for her to be happy again. All I have wanted for her was to be happy and alive. It was either walk away in that moment and trust these people to help us, or risk that we would wake up one morning, or come home one day, to find the beautiful “gift” we had been given, now 17 years ago, gone forever, no longer living.

This moment, too, feels as if it were yesterday. Sadly, Renae has never been as fully alive as she was during her first 16 years of life, which causes me to ask this question:  If her birth was my greatest success, would her death, even figuratively, be my greatest failure?  If I were to make a hypothesis based on my experience with my daughter, I would have to say yes. However, would that hypothesis be proven true or false?  I believe it is a matter of perspective. Success and failure are in the eye of the beholder.

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.

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 façade 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

Behind Dr. Oz's Curtain

My son's pictures on the Dr. Oz Show, September 9, 2014

What’s Really “Nuts or Normal?”

“Pay no attention to that man behind the curtain.”—The Wizard of Oz, 1939

I don’t watch much television. In the aftermath of September 11, 2001, when I was shocked to see my then four-year old son crash his toy airplanes into towers built of blocks, I decided we didn’t need cable television and 24-hour news anymore. All the news was bad. And the rapidly expanding reality TV genre was worse. My children were raised on a media diet of PBS (delivered via old-fashioned rabbit ears) and DVD science documentaries we checked out from the library.

That being said, I’ve been on television more than some people, usually to talk about the increasingly desperate need to address the public health crisis of mental illness (one of my children has bipolar disorder). I’ve appeared on national media including the Today Show, Good Morning America, Anderson Cooper 360, Erin Burnett, and Al Jazeera America. I’ve done numerous local broadcast interviews, most recently in Bismarck, North Dakota and Cincinnati, Ohio.  

I was even fortunate to be a guest on the Dr. Oz show last year to talk about my book. Though I don't watch much television, I knew who he was, mostly from his syndicated column that appears on Sundays in my local newspaper. And while I was also vaguely aware of controversy about some of the weight loss methods promoted on his show, I didn’t understand why people wouldn’t just do their own research. There aren’t many times the word “always” is appropriate, but I think it’s fair to say that “Get Rich Quick” and “Lose Weight without Diet or Exercise” promises are almost always too good to be true.

I’m a bit puzzled by the credibility that people attach to television celebrities. The medium’s first duty is clearly to entertain; daytime television never even pretended that it had an obligation to educate.  What are your ethical obligations, then, if you’re a daytime television celebrity physician who calls himself “America’s Doctor”? How do you entertain your audience while also upholding your Hippocratic oath to protect the individual patient’s health and privacy?

In light of this flurry of Dr. Oz criticism, including calls for his resignation from the staff of Columbia University’s medical school, my fearless friend and fellow mental health advocate Janine Francolini of the Flawless Foundation has been quick to remind the public of the Dr. Oz show’s truly terrible 2012 series “Are You Normal or Nuts?” in which a panel of “top psychologists” evaluated audience members’ mental health concerns. 

This truly tasteless show echoed an equally tacky Reader’s Digest annual feature by the same name, which trivializes the tremendous suffering experienced by individuals diagnosed with serious mental illness and their families. For example, the 2013 "Normal or Nuts" article led with this charming introduction: “Calling all neurotics, paranoids, and phobics! Our panel of experts says you might not be as loony as you think in this fan-favorite feature.”

And people wonder why there’s still stigma attached to mental illness.

Like Janine, I want Dr. Oz to use his celebrity status to promote mental health. In my personal experience with him, that’s exactly what Dr. Oz did.

“I’m a dad, and this is important to me,” he told me before we began taping a segment discussing my experience as a parent of a child who has bipolar disorder. His approach to my family’s story was overwhelmingly positive, highlighting the tremendous gains my son has made since his diagnosis in May 2013. The audience applauded when I shared that my son has now written a book of his own, a science fiction novel where the Greek gods all have a mental illness that is actually a super power. This is what the correct diagnosis and treatment can mean to parents and children suffering with mental illness. It means hope.

Dr. Oz has tremendous power to shape public opinion about mental health and mental illness. How can we encourage him to use his power for good, like he did for me and my son? When it comes to mental illness, sadly, too many Americans are still like star-struck Dorothy, believing in the all-powerful image of Oz, not willing to look behind the curtain and acknowledge the truth.

I have an idea for this season’s “Are You Nuts or Normal?” producers. Dr. Oz invites panelists to rate people like Judge Michael Bohren, who refused to authorize medical treatment for 12-year old Morgan Geyser, diagnosed with paranoid schizophrenia and locked up away from her family and denied medical treatment for her brain disease for almost a year.

Nuts or normal?

Dr. Oz interviews the six police officers who tasered 130-pound Natasha McKenna, diagnosed with schizophrenia, and asks them to explain why she died in custody. 

Nuts or normal?

Finally, Dr. Oz presents British parliamentary candidate Chamali Fernando so that experts can discuss her suggestion that people with mental illness should wear color coded wristbands. 

Nuts or normal?

The way we fail to treat children and adults with mental illness in this country is what is really crazy. It’s also expensive, not only in financial terms, but also in lives lost, in dreams shattered. Dr. Oz could rebuild his credibility by focusing his attention on this public health crisis, by providing help—and hope—to millions who are suffering with serious mental illness. 

The Dangerous Illusion of Safety

What a German co-pilot’s death and a Jewish rabbi’s life teach us about love

In 1984, I was 12 years old. That summer, my mother handed me two worn paperback books: George Orwell’s 1984 and Aldous Huxley’s Brave New World. “Read them both,” she told me. “Then tell me which one you think is more likely to come true.”

In 1984, I chose Huxley, with his seductive dystopian future shaped by caste systems and fueled by a pleasure drug that rendered life pleasant but meaningless.

In 2015, with our terrorized, NSA-monitored, trigger-happy America, I choose Orwell and his future built on fear and the dangerous illusion of safety.   

For me and for many, this Easter season has been overshadowed by yet another tragedy involving a young man with mental illness. This time, the weapon of destruction was an airplane, not a gun, and it proved far more deadly than other tragedies like Sandy Hook or Columbine. Yet like the school shootings, the essential purpose of the Germanwings crash was the co-pilot’s suicide.

While tabloids could not resist inflammatory headlines like “Madman in the Cockpit,” 

for the most part, the mainstream news outlets were respectful and cautious, stressing the outlier nature of the tragic incident that claimed 150 lives and calling for an increased focus on improving mental healthcare for everyone. Two years after Newtown, this balanced approach shows that we have come a long way as a society in how we understand mental illness.

But the “blame and shame” comments on these articles demonstrate that we still have so far to go. 

Orwell’s book described a society controlled by fear. I would suggest that our society is swiftly moving along this exact trajectory, and that the way we treat people who have mental illness demonstrates how Orwellian fear can be used to control public opinion.

As one example of how we have traded reason for fear, in the wake of the Germanwings tragedy, a journalist with a major news outlet actually asked a mental health policy expert friend of mine, “Is it safe to fly?”

This question demonstrates our incredible inability as a species to assess risk. In fact, it is still safe to fly, much safer than driving to the grocery store. In 2013, for example, there were 32,719 automobile crash fatalities, and only 443 aviation related deaths. This year won’t be much different, even with the Germanwings disaster.

The way we think about violence and mental illness also reveals how we fail to understand risk. While it is true that school shooters are more likely than the general population to have mental illness, the vast majority of gun-related violence is not associated with mental illness. The U.S. Centers for Disease Control and Prevention has tracked school-related violence since 1992: in the entire United States, between 14 and 34 youth die violently at school each year. To put that number in perspective, in Chicago alone, more than 300 young people between the ages of 10 and 25, mostly young men, were killed by guns in 2008. 

The crux of our collective and irrational fear is this simple truth: we are all going to die. An almost statistically insignificant number of us will die in an airplane crash. More of us will die in car accidents or because of gun violence or by suicide. Many of us will live to old age, only to succumb to dementia, heart disease, or cancer. But one way or another, every one of us is going to die. Nothing can keep us safe from death.

Only when we embrace this essential condition of human existence—when we become comfortable with the inevitable truth of our ultimate ending—can we live a life that is truly free from fear.

For me, Easter is a celebration of this freedom. The celebration begins more than 2000 years ago with Christ’s bloody, agonizing exit from mortal existence, his lifeless body hanging on a cross, pierced by a Roman spear. The celebration ends with Christ’s mythical transcendence to divinity and allegorical return to the empty tomb. But Easter is really a celebration of radical love, the kind of love that makes all men and women our brothers and sisters, the kind of love that conquers death.

I think sometimes that we focus too much on the promise of the resurrection, of life everlasting, and too little on the Rabbi’s earthly message of love right here and now. At its heart, Easter teaches us to overcome our fear of the most cruel and brutal death possible, to embrace instead the life we were meant to live. Christ's life reminds us that a stranger from Samaria may save us, that the leper may be cured against all odds, and that none among us is perfect. Christ’s message was to “love one another,” to embrace the stranger, to help the poor, and to forgive.

Instead, our “Christian Nation” has adopted an Orwellian illusion of safety and rejected the inherent risk of Christ-like selfless, radical love. We do not love one another. We do not embrace the stranger or help the poor; we blame them and incarcerate them. We do not forgive trespasses; we harbor grudges, as individuals, as communities, and as nations.

Here’s the question I have for you on Easter: What if this life is all we have? That is the question we are asking ourselves, in the wake of a senseless airplane crash that could have been prevented, if only (mental health care, no stigma, social support networks, etc.).

The question we should be asking ourselves is this: “How do I live the best life I am capable of living, here and now, today?”

Only by answering this question can we overcome the Orwellian culture of fear that is dividing the world into smaller and smaller islands of false safety. None of us can escape death. But Christ’s death should have taught us this: we all have a sacred duty to love.