Is This Mic on?

Why I went an entire year without posting to my blog

Well, I mean, no one reads your blog anyway, right?

A year ago today in 2018, I was fidgeting on the examination table at my ob/gyn’s office, a paper drape wrapped awkwardly around my legs. I take these women ‘s health things pretty seriously; in 2012, I was diagnosed with Stage 0 cervical cancer (or carcinoma in situ), which really isn’t as serious as it sounds, but when you’ve just lost your job and your health insurance like I had, anything with the word “cancer” can seem pretty darn scary. I had avoided the dreaded pap smear for six years, too busy trying to balance work and four young children as a single mother, and who had time for self-care, let alone self-health-care?

(Planned Parenthood saved my life. The outpatient surgery was a fraction of the cost at their non-abortion performing clinic compared with other local providers, and they told me to pay “whatever you can, whenever you can.” Just a few weeks later, I had another, better job and health insurance).

Back to 2018. The perky medical assistant wheeled up the EMR cart and said, “I’m going to ask you a few questions about your health.” Sure. Standard stuff.

Then she asked, “Have you noticed a reduced interest in doing things that you normally enjoy?”

The question took me aback. This was a gynecological exam. The etymological history of the word hysteria aside, what did my mood have to do with my uterus?

“Yes,” I responded honestly.

“Are you feeling down, depressed, or hopeless? Have you felt that way for more than two weeks?”

“Yes,” I replied, “But it’s situational.”

And that situational depression—its causes and effects—is the reason I haven’t posted to my blog for a year. The situation involves a loved one, and that loved one has a medical condition for which the main treatment method involves the word “anonymous.” We don’t talk about it. We certainly don’t write about it.

After I continued to respond “yes” to each question on a nine-item depression screening instrument, the medical assistant stepped out to consult with my nurse practitioner who came into the room with a concerned smile.

“It’s situational,” I told her.

“I get that,” she said. “How long has this situation been affecting you?”

When did I stop hearing birdsong?

Was it in October, as the leaves changed colors and fell to the earth, as I grieved my dead father?

Certainly, the “situation” was serious by November, when I was a keynote speaker for the National Federation of Families for Children’s Mental Health annual conference. It took everything I had to pull on nylons, slip into my red power dress and navy blue jacket, step on a stage in Houston in front of hundreds of passionate, powerful mental health advocates, and share my family’s story. All I wanted to do then was to sleep—permanently. I felt like a fraud.

Everywhere I went in Houston during that trip, I saw ghosts. In the tunnels, my father, who worked at One Shell Plaza. In the public library, my teenage self, poring over microfiche news clippings about T.E. Lawrence’s death (my first published article, in Brigham Young University’s Insight Magazine, was about Lawrence of Arabia and the problem of modern heroism). In the theater district, my first love, turning to me with bright eyes at the fountains beside the Wortham Center after we saw Prokofiev’s Cinderella on my 18^th birthday.

No, if I was being honest, the “situation” and my inability to function at normal levels was probably earlier than that—September 2018, the start of a new term, when I was eligible to apply for promotion but simply could not see how I deserved it. What was the point of gathering student evaluations? How could I possibly write a narrative highlighting my accomplishments in the classroom when I myself could not see them? Wasn’t I just a burden to everyone?

In hindsight, I think that at least subconsciously, I sensed some of the warning signs that summer, and I tried to take proactive measures. I stopped drinking in early 2018 and will never go back. I resumed my regular yoga practice, lying in corpse pose after a strenuous daily vinyasa flow.

In hindsight, it wasn’t enough.

I was first diagnosed with depression in my senior year of college, and the illness nearly derailed me. With medication, therapy, and incredibly supportive friends and family, I was able to persevere and recover, graduating on time.

When depression struck again during my third pregnancy, I was forced to confront the fact that my mental health condition might be chronic. Once again, medication—a risk during pregnancy but a necessary one—stabilized me.

Before my divorce in 2008, as my marriage was ending, I reached a crisis point (I talked about this turning point and stepping away from suicidal ideation in a 2018 Story Story Night performance about semicolons). Yet once I was on my own, despite the challenges, I felt tremendous gratitude for my life, for second chances, for my beautiful children. During the years that my son was sick, I focused my energy on caring for him, and I am so proud of the man he is becoming today. I was grateful for the opportunities that both Eric and I had to share our stories of hope and recovery. Eric's awesome TEDx Boise talk has way more views than mine (I call that a definite mom win!).

But as a mental health advocate, I hate to admit that I grew complacent during that ten-year reprieve about my own mental health.

When did I stop hearing birdsong? All that I know is this: by the time I took the stage in Houston, I was moving slowly through muffled, suffocating silence. The air pressed on my skin, creeping, crawling. I could not escape. What if the worst thing happens? I thought. What is the worst thing?

I survived. Then December 2018 came. The second week of December, when I lost hope, again, forever.

I have to be vague because if there’s one thing I’ve learned in my years of advocacy, it’s that our stories have boundaries. Where does my story end and where does yours begin? If you want to remain anonymous, do I need to remain silent too? What am I allowed to say? 

I’ve decided after a year of silence that I can talk about myself—my own experiences. I can say that in the second week of December 2018, I felt numb, grey, beyond hopeless, because being hopeless would require a knowledge of its opposite, hope, and those were just four letters on a page to me, like love, like self. These words had lost their meaning. In my experience with depression, everything is spoken and heard through thick cotton. Colors fade. Sleep disappears. Food has no taste. If there are birds, they do not sing.

I can say that this depressive episode was situational, but I cannot talk about the situation because stories have boundaries, and words have consequences. I know this more than most people.

I hate December. In my case, the consequences of sharing stories have involved my worst fears: the loss of my children.

In the second week of December 2018, I had 48 hours to find a new place to live. Thanks to white privilege and a good credit score, I was able to do this. And so there I was in my ob-gyn’s office on the last day of December, flunking a nine-question depression screening.

In 2014, after my book The Price of Silence: A Mom’sPerspective on Mental Illness was published, I had the extraordinary opportunity to meet with David Pate, then CEO of St. Luke’s, the largest healthcare provider in Idaho. He asked me, “If you could make one change to our current healthcare model that would promote mental health, what would you do?” 

I answered without hesitation. “Work mental health screenings into all physical wellness check-ups, from pediatrics on up,” I said. Of course, there are numerous other things we can do—more hospital beds for psychiatric care, integrated models of mental and physical health care, etc. But access to care all starts with knowledge and normalization.

And here I was, four years later, at a St. Luke’s women’s health clinic, experiencing the integration of a mental health screening in my own physical wellness check-up.

“It’s situational,” I told my nurse practitioner. “It will pass.”

“But you don’t have to live like this right now,” she replied. She touched my arm gently and I burst into tears. Not because I was sad—my depression is not sadness. Touch—any touch—was painfully intrusive.

She prescribed antidepressant medication, the same one I had taken during my two previous episodes. The medication worked—I could function again—but I didn’t feel like myself. I was productive but still emotionless, an automaton. I could sleep and eat again, but I still couldn’t hear the songs of birds.

“Let’s try something different,” she said.

We did. And the second medication worked. Everywhere I went, I felt like I was discovering a new language—the language of the birds. They were singing to me, warbling the forgotten words: hope, love, self, okay. I was okay.

I have become acutely attenuated to birdsong.

I have almost completed my promotion packet. Reflecting on my Fall 2018 semester has instilled me with a sense of humility and gratitude that makes me a better teacher.

I have accepted that the nameless heartbreak of December 2018 has become a part of me. 

The past can’t be fixed, but the future is interesting to me again. I want to try.

The "situation" is still a major part of my life, and it’s still anonymous, but I am trying to find ways to reclaim my own voice. And I’m trying to appreciate this opportunity to practice radical compassion. I’ve realized that these efforts will be the work of a lifetime and that as long as some mental health conditions continue to require silence and shame, our work as advocates must continue.

Mental health is physical health. In 2020, we have work to do.  

To be fair, I did write a lot in 2019, just not for my personal blog. I continue to blog regularly for One in Five Minds.org, an amazing organization dedicated to children's mental health, and I still write occasionally for Eagle Magazine and  Greenbelt Magazine. I also had my first short story, "Jesus, Take the Wheel," accepted for publication in the 2019 Writers in the Attic "Fuel" anthology from the Cabin. 

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!

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

The Third Week of October

Some Memories Never Fade

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

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

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

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

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

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

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

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

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

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

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

Singing to End Stigma

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

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

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

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

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

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

My book The Price of Silence about parenting a
child with mental illness is available at
independent bookstores like Iconoclast Books.

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

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

Because the Price of Silence is still far too high for children, families, and communities.

The Price of Silence

Dear Friends,

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

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

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

Andrew Solomon, author of Far From the Tree (which everyone should read), wrote: 

In this courageous, determined, radical book, Liza Long exposes the dearth of alternatives for parents of kids with mental illnesses, the shame that attends their perceived failures, and the hope that such families may find their collective voice and demand better options.  I hope her passionate cry is heard far and wide.

I am profoundly grateful to the families, providers, police officers, educators, and advocates who shared their often painful stories with me. It's not easy to talk about mental illness; I know that truth firsthand. And I am especially grateful to my son, whose perspective provides valuable insight into mental illness and how it affects children. His humor, intelligence, and love have made my life immeasurably better. He is not a bad kid--he is an incredibly brave kid (and he just finished writing his first book! At age 14! It's about demigods from outer space).

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

I hope you will read my book. But more importantly, I hope that you will join me in speaking up for change. Please contact your representatives in  Congress. Join Treatment Before Tragedy. Participate in your local NAMI walks this fall. And share your stories. Their truth is powerful. Together, I know we can make a difference. In the words of one of my favorite poets, Robert Frost:

 

Only when love and need are one, 

And the work is play for mortal stakes

Is the deed every really done

For heaven and the future's sakes.

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

Best to you all!

Liza

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

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

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

Commit or Complete?

Why we need to choose our words more carefully when we talk about suicide

credit: TreatmentbeforeTragedy.org

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

My next thought, though, was of David Foster Wallace. I took his 2008 suicide pretty hard. Foster Wallace was one of those authors with whom I had an intellectual affair of sorts—when I read Infinite Jest, I felt like he was speaking to me in a code that only he and I could understand. So of course, upon learning that Robin Williams’s heroic struggle with lifelong depression had ended, I thought of Foster Wallace’s description of why people who suffer from a choice-stealing brain disease sometimes end their own lives:

“The so-called ‘psychotically depressed’ person who tries to kill herself doesn’t do so out of quote ‘hopelessness’ or any abstract conviction that life’s assets and debits do not square. And surely not because death seems suddenly appealing. The person in whom Its invisible agony reaches a certain unendurable level will kill herself the same way a trapped person will eventually jump from the window of a burning high-rise.”

I felt the exact same sadness upon learning of Robin Williams’s untimely exit from this world that I would have felt if I had learned that his struggle with cancer or any other disease had ended. But not everyone saw it that way. If you didn’t read Matt Walsh’s tone-deaf diatribe describing suicide as a choice, don’t. But if you did, see how his words read when the word “depression” is replaced with “cancer,” and you’ll have some idea of how hard it still is to talk about mental illness.

Also, incidents like this give us an opportunity to talk about cancer, and we certainly should.  Only we shouldn’t turn the subject into a purely cold, clinical matter. “Chemical imbalances,” people say. “A man is cancerous because of his brain chemicals, and for no other reason.” 

No, we are more than our brains and bigger than our bodies. Cancer is a mental affliction, yes, but also spiritual. That isn’t to say that a cancerous person is evil or weak, just that his cancer is deeper and more profound than a simple matter of disproportioned brain chemicals. And before I’m accused of being someone who “doesn’t understand,” let me assure you that I have struggled with this my entire life.

Like Matt Walsh, like many people, I have had my own struggles with depression. David Foster Wallace’s description of suicide resonates with me so strongly because late one night, in the throes of despair at the end of my marriage, overwhelmed by a loss of faith, I thought I was at the top of a burning building, and I thought I would have to jump. In that moment of agony, I truly believed there was no other way, that the world would be a better place without me.

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

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

Words have power. And words are our only way to move beyond the solipsistic existence of our own minds and into shared community with others. Yet the existential conundrum of life is that we are all, ultimately, alone. As Andrew Solomon noted in his poignant tribute to Williams, “The Crime of Loneliness,”

“A great hope gets crushed every time someone reminds us that happiness can be neither assumed nor earned; that we are all prisoners of our own flawed brains; that the ultimate aloneness in each of us is, finally, inviolable.” 

Which brings me to language, that mechanism of hope that sometimes allows us to escape the prison of our own minds. Here’s the thing: the word “commit” and the word “suicide” don’t belong together. They just don't.

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

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

Dr. Thomas Joiner has made it his life’s work to understand why mental illness sometimes leads to death by suicide; he notes that the rarity of suicide notes suggests how profoundly alone and unable to communicate people who take their own lives feel at the end of their existence:

“To say that persons who die by suicide are lonely at the time of their deaths is a massive understatement. Loneliness, combined with alienation, isolation, rejection, and ostracism, is a better approximation. Still, it does not fully capture the suicidal person’s state of mind. In fact, I believe it is impossible to articulate the phenomenon, because it is so beyond ordinary experience. Notes are rare because most decedents feel alienated to the point that communication through a note seems pointless or does not occur to them at all." 

Much has been written about mental illness and stigma. I myself have said that “it’s time to talk about mental illness.” But as Dr. Joiner observes in his 2010 book, Myths about Suicide, “Talk about suicide is not cheap.” With suicide, the stakes are very real.

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

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

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

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

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

The Great Divide

Hendric Stattmann"The Grand Canyon"

Two bills in Congress, both designed to improve mental healthcare, reveal a growing rift in the mental health community

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



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

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



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



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



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



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

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

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