Guest Blog: President’s Groundbreaking Statement – “Everyone Matters!”

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“Everybody Matters”

By Ray and Connie Maternick

We were watching the President’s State of the Union Address on Tuesday night. As the speech droned on we were getting tired and almost ready to call it a night.  We looked at each other and simultaneously said, almost sighing, he missed a very important opportunity. At that point we were just half listening, and about ready to hit the off button on the TV, when out of the blue, four words caught our attention.

“….Americans with Mental Illness….”

I immediately went to the computer and pulled the transcript of the speech to get the context of what the President was saying. Read this carefully. This is what the President of the United Sates said:

“I want future generations to know that we are a people who see our differences as a great gift, that we are a people who value the dignity and worth of every citizen: man and woman, young and old, black and white, Latino and Asian, immigrant and Native American, gay and straight, Americans with mental illness or physical disability. Everybody matters.”

I actually had to read it a couple of times just to make sure I was not misreading the statement.

In most cases, the term “mental illness” is mentioned in context of controversial political issues such as gun control. However, President Obama mentioned “Mental Illness” in an entirely different context, one that I had never heard before.

He specifically called out mental illness as an equal group with value, dignity and worth. He included those who struggle with mental illness equally with gender, color, race, age and sexual preference. Then he summed it all up with these two empowering words “everybody matters.”

Wow-this is a ground-breaking statement. We wondered if anyone else picked up on this and the real significance of its power.

He essentially included “Americans with mental illness” as another aspect of our diversity!

One does not choose to be mentally ill. It is a disease of the brain, a card you are dealt; an illness with which the afflicted individual must learn to cope. This is a great way to look at people who have mental illness versus seeing them as “mentally ill.”

In this way they are not defined by their illness, but viewed as individuals who are valiantly struggling with a debilitating illness. Putting those who struggle with mental illness in this context, with other groups who are “different” in one way or another, gives them the same dignity, value and basic humanity as all others. In our opinion, including those who struggle with mental illness in the list of diverse groups that comprise our great country was a very telling and truthful comment.

This is not the first time the President has emphasized those who struggle with mental illness. In June 2013, President Barack Obama kicked off the White House’s National Conference on Mental Health. In addition to the President, the event was attended by Vice President Joe Biden and other members of the president’s Cabinet, as well as activists and celebrities Glenn Close and Bradley Cooper.

In his opening remarks the President said he hoped the event will “elevate the conversation on mental health to a national level” by “bringing mental illness out of the shadows…There should be no shame in discussing or seeking help for treatable illnesses that affect too many people that we love,” the president said. “We’ve got to get rid of that embarrassment. We’ve got to get rid of that stigma. Too many Americans who struggle with mental health illnesses are suffering in silence rather than seeking help.”

Still, even with words from the person who leads our Nation,  “Americans with mental illness” continue to be marginalized, their existence swept under the rug, discounted and ignored, many remaining in the shadows due to fear of society’s ignorance and reaction.”

Now, the challenge is to make these statements by the President count and gain legs with the general public to further mobilize support, funding, and political will to implement positive change.

I have always believed that three basic elements are required to affect change and make a difference. The three elements are “Vision, Passion and Action.” With his speech the other night, the president has provided us with a non-partisan vision!  Now we need to ignite the passion of the people of this country to want to help and provide support for those who struggle with mental illness. Finally, our country and we as individuals need to take the action necessary to make positive and lifesaving changes in our Mental Health Policies, infrastructures and system of support and treatment. We need to continue to call attention to the inclusion of people, our neighbors, friends, family members with mental illness. We need to get people thinking about those with mental illness and recognize this as another category of society with value, worth and significance in their lives. This is a mindset we all need to encourage and foster in our daily interactions.

How do we know when the stigma has been reduced to the point where the balance of public support has shifted towards truly helping and caring about those with mental illness?

This balance shifts and becomes apparent when the general public (specifically those who do not have a family member of friend who suffers from mental illness) begin to understand that mental illness can strike anyone in any family of any economic stature. The balance is tilted in favor of support when the general public is able to empathize with complete “strangers” and their families, like Ronald Hunter Jr., Zac Pogliano, Jacob P. Stafford-Riches, Robin Williams, Matthew Ajibade, Reginald Latson, Josh Francisco, and tens of thousands more who valiantly struggled with this disease of the brain until their lives ended way too early and millions more who are currently struggling with mental illness.

Our son, Andrew, struggles with serious mental illness and fortunately is currently getting help in a State Hospital. He is very mindful of his illness and spends his time learning to cope with his illness and making the best of his situation. He writes poetry and songs. One particular song that he wrote early on, when his illness first began to manifest itself, stands out to us. It is called “Perfect Harmony” and relates to the President’s statement that everyone matters and has dignity and value. The reason is because we are all made from the same material, we just wear different clothes…..we are all one Humanity. As my son writes:

Let’s come together, we’re all people of clay

No one’s better from love we all stray

Let’s come together and return to the day

Of forever and in the garden we’ll play

In perfect harmony

And in the garden we’ll play

In perfect harmony

Remember: EVERYBODY MATTERS!!

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Ray, Connie and Andrew

New TV Spot Focuses on Men and Mental Illness — Courtesy BringChange2Mind

Bring Change 2 Mind, the stigma fighting non-profit that actress Glenn Close created, released a new public service announcement yesterday.  This is its third PSA and it features four men from professional sports, television and the music industry, including one of my favorite comedians and actors, Wayne Brady.

“We want to erase the stereotypes, and to create a new narrative by raising awareness of the mental health concerns that men face,” Pamela Harrington, executive director of Bring Change 2 Mind, wrote in an email.

Bravo!  Congratulations to Bring Change 2 Mind for its continued efforts to fight stigma and educate the public.

Thanks for the Mention: CNN Names 9 Warriors for Mental Wellness

I am honored to be named a Mental Wellness Warrior by CNN, especially after reading the names of my fellow warriors. It’s nice to be noticed, but everyone who has a mental illness and is quietly going about their lives — are warriors. And everyone who loves someone with a mental illness and is fighting to reform our system is a true warrior too!

Thanks to Wayne Drash for reminding  the public that there are many faces to mental illness.

From CNN    Mental wellness warriors: Fighting for those who need it most

Hollywood star Demi Lovato has become an advocate for the mentally ill after coming forward about her own struggles. "Doing better with bipolar disorder takes work, and it doesn't always happen at once."

Hollywood star Demi Lovato has become an advocate for the mentally ill after coming forward about her own struggles. “Doing better with bipolar disorder takes work, and it doesn’t always happen at once.”

(CNN)   Too often the nation only hears about mental illness when tragedy strikes. But there are warriors for mental wellness in many fields, fighting for better treatment and working to defy stigma. CNN highlights nine fighters, from the famous to the everyman, who are making a difference.

1. Demi Lovato

Actress and singer Demi Lovato stepped into the mental health advocacy role in 2014 by openly discussing her struggles with bipolar disorder.

“I want to show the world that there is life — surprising, wonderful and unexpected life — after diagnosis,” she says.

In September, Lovato headlined the National Alliance on Mental Illness’ “Call to Action” day, telling the audience she will fight for comprehensive mental health reform. She also launched what she calls the Mental Health Listening and Engagement Tour to meet others struggling with mental health issues.

“Those of us here today,” she told NAMI supporters, “know that mental illness has no prejudice. It affects people of every race, age, gender, religion and economic status. … We need to send the simple message to our nation’s leaders: Mental health matters and must be taken seriously.”

The 22-year-old singer of smash hits “Let It Go” and “Give Your Heart a Break” struggled with depression and feelings of helplessness. “I’d medicate myself with drugs and alcohol in an effort to feel normal — not better, just normal.”

“I had very low periods that were so emotionally draining that I couldn’t find the strength to crawl out of bed.”

Her diagnosis of bipolar disorder was a “relief in so many ways.” It helped make sense of the desperation she had felt for years.

“Even with access to so much,” she told the NAMI crowd, “my journey has not been an easy one.”

The former Disney Channel star’s recovery was aided by a comprehensive approach: seeing a therapist, getting proper medication, sticking to a treatment plan, being honest with herself and taking better care of her body.

“Doing better with bipolar disorder takes work, and it doesn’t always happen at once.”

Mental health advocates say trying to reach America’s youth is one of the toughest things in overcoming stigma, and that Lovato’s star power helps bridge that divide. She says she’s proud of her recovery and that she got the “help that I need.”

“You can have that, too.”

2. Fred Frese

Fred Frese stands as the epitome of successful recovery from mental illness. At 25, he was diagnosed with schizophrenia as a Marine Corps officer, and over the next decade he cycled in and out of military, state, county, Veterans and private hospitals.

Fred Frese was once declared insane. He eventually headed up psychology at Ohio's largest state hospital.

Fred Frese was once declared insane. He eventually headed up psychology at Ohio’s largest state hospital.

In the summer of 1968, he was picked up by police because “I was trying to convert people to love, peace and justice.” A magistrate in Ohio found him insane and committed him to the state psychiatric hospital. “Twelve years after I was declared to be insane,” Frese says, “I was promoted to be the director of psychology at Ohio’s largest state hospital.”

Frese travels the nation promoting mental health treatment, giving speeches and serving as a positive example for those with severe mental illness. He says not enough people in recovery speak publicly because the stigma of mental illness is so strong.

Frese is a bundle of energy, a man who speaks in rapid-fire fashion almost like an auctioneer. He approaches mental illness as both patient and practitioner: his schizophrenia kept in check by medication and proper care. He says the nation’s mental health care system is in need of drastic reform. He points to the rise in homelessness, suicide and the difficulty in getting treatment.

“This is a national disgrace. We have abandoned, ignored and marginalized persons with these disorders, and something has to be done,” he says.

Frese approaches the topic with authority, and with humor. He describes himself as a stand-up schizophrenic. “Particularly proud of being an escaped lunatic,” he tells audiences to laughs.

Even as he struggled with his own mental health, Frese earned master’s and doctoral degrees in psychology from Ohio University. He eventually became the director of psychology at Western Reserve Psychiatric Hospital in in Ohio. He held that position for 15 years, until his retirement in 1995.

He currently is an associate professor of psychiatry at Northeast Ohio Medical University and a clinical assistant professor at Case Western Reserve University. He also has served for 12 years on the board of directors of the National Alliance on Mental Illness, the largest nonprofit advocacy group for the mentally ill.

His latest goal is to convince mental health professionals to “self-disclose” about their struggles with mental problems.

“This is an excellent way to fight stigma,” he says. “That’s a major part of my new mission.”

3. Ted Stanley

Ted Stanley, a billionaire businessman and philanthropist, gave the largest donation in psychiatric research history in 2014. The $650 million donation to the Broad Institute of MIT and Harvard is aimed at enhancing scientific research on psychiatric disorders with the hopes of leading to a breakthrough in new treatments.

Ted Stanley has dedicated his personal wealth to find a cure for mental illness.

Ted Stanley has dedicated his personal wealth to find a cure for mental illness.

Stanley has been on a quest the last 2½ decades to get to the root cause of mental health disorders. He saw the need for effective treatment after his son, Jonathon, was diagnosed with bipolar disorder at age 19.

His son responded to medication, but he met countless families whose children’s conditions never improved with medication.

“Human genomics has begun to reveal the causes of these disorders. We still have a long way to go, but for the first time we can point to specific genes and biological processes. It’s now time to step on the gas pedal,” Stanley said in announcing his gift. “I am donating my personal wealth to this goal.”

He said his dedication to this cause — and solution — is because he witnessed so many other patients and families have disappointing outcomes. “There was no treatment in sight to end it the way ours had ended with medication solving the problem,” Stanley said.

Coinciding with the donation was the release of a groundbreaking study on schizophrenia by Broad Institute scientists and hundreds of others. The study identified 108 genes linked with schizophrenia and could result in breakthrough treatment in the years ahead.

“We are finally beginning to gain the deep knowledge about these disorders that we have sought for decades,” says Tom Insel, director of the National Institute of Mental Health.

 4. Sarah Spitz

Sarah Spitz struggled with suicidal thoughts, first in high school and then again in college. The urges only intensified as the stress of college built up.

College senior Sarah Spitz has made it her mission to help students struggling with suicidal thoughts.

College senior Sarah Spitz has made it her mission to help students struggling with suicidal thoughts.

A senior at Emory University majoring in psychology, Spitz has turned her fear into action. She encourages students to seek help and uses her own experience as a way to relate to students struggling with the demands of college.

Spitz is the president of Emory’s chapter of Active Minds, a nonprofit group that links students across the nation and inspires them to speak up about mental health issues. She has seen the group grow from a handful of people to a couple dozen.

“When I first got involved with Active Minds, I felt like a bit of a hypocrite, because I used to be suicidal. I’ve made multiple suicide attempts,” she says. “Then, I was coming at it from the other perspective: trying to prevent suicide by connecting students. It felt kind of strange at first.”

It’s a role she now embraces because she sees the need for the help and for students to have a peer who can relate. She left Emory her freshman year in 2009 because her mental health was spiraling. She couldn’t eat or sleep.

When she returned to school two years later, she felt lost as she went from “being a mental patient to a real person in college.”

Active Minds provided her an outlet to “openly talk about where I’d been.”

“I will speak up about my own mental health struggles, and I help to encourage others to do the same,” she says.

Spitz believes students coming back from medical leave for psychiatric reasons need more help during that transition. She is determined to work with the university in helping future students during that phase.

5. Michael Woody

Michael Woody was a police sergeant in Akron, Ohio, when a woman with a long history of mental illness tried to kill him. That incident changed the course of his life work — to make sure police were properly trained to deal with the mentally ill.

Michael Woody saw the need for mental health treatment as a police officer. He now trains law enforcement on how best to respond to calls involving the mentally ill.

Michael Woody saw the need for mental health treatment as a police officer. He now trains law enforcement on how best to respond to calls involving the mentally ill.

The woman eventually jumped off a bridge after a grand jury recommended she go to prison for up to 25 years for felonious assault. Woody was the officer who found her body.

“That always stuck with me.”

Woody rose through the ranks and eventually became the director of training for officers. He studied how often police went out on calls involving people with mental health problems: at least one in 10 calls, meaning a rookie officer will likely encounter someone experiencing a mental breakdown on their first day.

Woody now heads CIT International, which works with local, state and federal agencies to train officers on how best to “de-escalate a situation when people are in crisis.” CIT stands for Crisis Intervention Team training.

“Law enforcement needs to recognize that at times, it is the wise officer who can conceal their combat-ready status,” says Woody. “Your normal police officer does not have a realistic view of mental illness. That’s because they only get called when there’s a crisis.”

CIT International has trained more than 3,000 law enforcement departments on how best to respond to mental health calls. Police undergo a 40-hour course in which they meet people with mental illness and their families, tour mental health facilities, and train for an array of scenarios.

CIT is meant to teach officers to respond with empathy while maintaining their own safety. “We’re trying to get officers to understand that this is an illness,” Woody says.

Officers typically “don’t get to see the person on a good day and usually we don’t get to see their parents or their loved ones on a good day.”

“In a CIT course, they get to see them on a good day and they hear a heart-wrenching story of a person with mental illness.”

And, in turn, a tense situation is calmed without violence. Getting police to understand takes time, Woody says, but it works.

6. Mia St. John

Mia St. John rose to become a world-champion boxer, but her big fight was outside the ring.

Mia St. John says she is motivated to change the mental health system. Her grown son committed suicide last fall in a hospital.

Mia St. John says she is motivated to change the mental health system. Her grown son committed suicide last fall in a hospital.

She struggled with suicidal tendencies, obsessive compulsive disorder, panic attacks and alcoholism. While she managed to overcome those challenges, the boxer and former Playboy model became an activist for people living with mental illness. She spoke at congressional hearings, worked with Rep. Grace Napolitano, D-California, on improving mental health awareness in schools, and advocated for the National Alliance on Mental Illness.

Not only could she relate to the difficulties of living with mental health issues, she also could relate to parents raising a seriously mentally ill child: Her son, Julian, struggled for the last seven years with schizophrenia. At 24, Julian St. John committed suicide inside a psychiatric hospital in November.

“The treatment of our mentally ill in this country is horrific, and I will die trying to expose this messed up system of ours,” St. John says.

Despite her fame and wealth, her son was homeless the last several years, living in park bathrooms in Los Angeles. She would visit him, trying to persuade him to get treatment. He was a brilliant artist whose works fetched $1,500 apiece when he was stable. But that was the trick, trying to keep him healthy.

“When my son was on his meds, there was no stopping him,” she says. “He was so talented. He would only wander off to the parks when he was off his meds.”

She won conservatorship in March 2014, allowing her to be more active in his health care decisions. Yet despite her best efforts, he cycled in and out of psychiatric facilities.

St. John knows treatment works. She’s living proof. Now, she hopes to expose what she calls the inhumane treatment of the mentally ill for a potential documentary. That, she says, is the best way to honor her late son — and the hundreds of thousands of other homeless Americans who remain untreated.

“We have to get word out, so that change can get made.”

7. Leon Evans

Leon Evans believes in the concept of “therapeutic justice,” the idea that the mentally ill should get treatment rather than sent straight to the nation’s jails and prisons after committing offenses.

Leon Evans helped form a center in San Antonio to keep the mentally ill out of jails and prisons. The center saved the city an estimated $15 million in 2014.

Leon Evans helped form a center in San Antonio to keep the mentally ill out of jails and prisons. The center saved the city an estimated $15 million in 2014.

“It’s not the courts that get them better, it’s the treatment,” he says.

Evans has been instrumental in bringing together law enforcement authorities, mental health officials, judges, and policymakers in Bexar County in San Antonio, Texas, to work together in dealing with the mentally ill.

“It doesn’t make sense to have these people in prison because they don’t make good prisoners,” he says. “Mentally ill inmates agitate other prisoners and that makes it dangerous for everybody.”

Evans helped develop what is called the Restoration Center, an integrated mental health service center that opened in 2003. When San Antonio police pick up a mentally ill person, their first stop now is the Restoration Center. Instead of being dumped off at a crowded jail, the mentally ill get proper care at the facility.

As a result, an estimated 25,000 people a year are diverted to the center: people who used to go to jail, the emergency rooms or straight back out on the streets, says Evans. The center saved the city an estimated $15 million in 2014. In addition, the homeless population was down 70% and the county jail system has 600 empty beds.

Kansas City and Des Moines opened similar centers last year modeled after the San Antonio facility. Evans, the executive director of the Center for Health Care Services, is in high demand around the country.

“We’re happy to share information with folks,” he says, “because I think we’re doing some good.”

8. Pete Earley

Best-selling author Pete Earley has become a one-man watchdog of the mental health community and the politics surrounding efforts to reform the nation’s mental health system.

Author Pete Earley remains a force in the mental health world, keeping track of reform efforts in Washington.

Author Pete Earley remains a force in the mental health world, keeping track of reform efforts in Washington.

Folks in the mental health community — from those raising children with severe mental illness to policymakers — keep close track of what Earley writes on his blog.

The former Washington Post journalist gets scoops about the latest reform efforts long before mainstream journalists.

His book, “Crazy: A Father’s Search Through America’s Mental Health Madness,” is considered the bible among mothers and fathers trying to raise a child with severe mental illness. A 2007 Pulitzer Prize finalist, “Crazy” details Earley’s efforts to get care for his son and America’s criminalization of the mentally ill.

“Suddenly the two of us were thrown headlong into the maze of contradictions, disparities and Catch-22s that make up America’s mental health system,” Earley writes.

Since going public with his family’s story, Earley has traveled the country and the world discussing the need for better care.

9. Creigh Deeds

Virginia State Sen. Creigh Deeds survived being stabbed multiple times by his 24-year-old son in November 2013. His son, Gus, suffered from bipolar disorder and had been turned away by a mental health center because a psychiatric bed could not be found.

Virginia State Sen. Creigh Deeds survived an attack by his son and has since dedicated his life to mental health reform.

Virginia State Sen. Creigh Deeds survived an attack by his son and has since dedicated his life to mental health reform.

Shortly after returning home, Gus stabbed his father with a knife and then shot himself.

Creigh Deeds has turned the tragedy into action. A state lawmaker for more than two decades, he was “always ashamed by Virginia’s abysmal ranking” when it came to mental health care. Yet he admits it was never his priority.

Seeing his son decline — even turned away when he sought treatment — was the lawmaker’s wake-up call.

“I promise you I would give anything to not be in this position today,” Deeds said at this year’s annual National Alliance on Mental Illness conference.

NAMI honored Deeds with the Richard T. Greer Advocacy Award for his efforts to reform Virginia’s mental health laws. “Who knows whether the cure for cancer or the next big idea to save the Earth or to unlock the secrets of the universe is locked in the mind of someone who now struggles with a disease of the brain?” he said. “How many of those bright minds are locked away in our criminal justice system?”

Deeds signifies a valiant father seeking to make a difference. He says he owes it to his son’s legacy and for the millions of others who need proper treatment in America. The Washington Post ran a stellar profile of Deeds and his recovery in November.

“My son was unbelievable,” he told NAMI. “He remains, in every respect, a hero. Gus was exactly what I wanted to be. He was smart, handsome, strong, inquisitive, confident. …

“He could do anything he wanted to do, and do it well. His life was just not long enough.”

His reform efforts, he says, have just begun. “I’m not finished.”

Zac Pogliano Dies In Sleep: Mother and Son Spoke Frankly About Struggles

Zac Pogliano

Zac Pogliano


It is with much sadness that I am noting the death of Zac Pogliano, whose mother, Laura, has been a tireless advocate for mental health care and reforms. Mother and son told their stories eloquently to USA TODAY for its wonderful series: Mental Illness: The Cost of Not Caring. In August 2013, Laura wrote a blog post for me entitled: A Police Officer Who Did the Right Thing: Helped My Son When I Couldn’t. According to friends, Zac died during his sleep. No cause has yet been reported.

I have admired Laura for some time and am tremendously sorry for her loss and the loss of her wonderful son as an advocate. Many of their friends have commented about Zac’s death at Treatment Before Tragedy on Facebook.  For those of you who didn’t know Laura or Zac, here is the USA TODAY series about them.

USA TODAY: The Fortunate Mother: Caring for a son with schizophrenia

November 16, 2014

DESPITE HARDSHIPS, A MOTHER KNOWS IT COULD BE WORSE

By Rick Hampson

TOWSON, Md. — She says she’s lucky, even though her son’s mental illness has driven her to bankruptcy, sidetracked her career and left her clinically depressed.

She’s lucky, even though his illness cost her the time to plan her daughter’s wedding and the money to pay for it. Even though her only friends now are ones who accept last-minute cancellations of long-made plans. Even though she can’t recall the last time she went out on a date.

Lucky, even though her son has been hospitalized 13 times in six years. Even though he’s repeatedly called 911 with fantasies – a gunshot wound, a heart attack. Even though he has fantasies (he’s rich), hallucinations (he’s being followed) and delusions (Mom is a robot). Even though he’s slept with a butcher knife under his pillow.

Laura Pogliano calls herself lucky even though Zac, her dear boy, has lived all his young adult life with schizophrenia.

Her gratitude makes sense only when you consider the state of America’s system of mental health care.

In a series of stories this year, USA TODAY has detailed the human and financial cost of caring so little about the nearly 10 million Americans who are seriously mentally ill. It’s a cost borne disproportionately by patients’ families, and it is crushing many of them.

About 40% of the most disabled mentally ill are cared for by relatives — but not forever.

“In the end, most of them bail out. They can’t take it any longer,” says Doris Fuller of the Treatment Advocacy Center, which wants to make it easier to legally compel the recalcitrant mentally ill to accept treatment.

Families can force their psychotic members to enter an institution or receive treatment only by proving they’re dangerous to themselves or others. Even then, a shortage of facilities ensures that patients often are discharged prematurely. And families face exorbitant out-of-pocket costs for all but the most basic care.

So Laura Pogliano feels lucky that she’s been able to hang in, lucky that Zac is not living in jail or under a bridge.

Zac’s illness developed before he was 18, giving her legal control at the outset. He does not refuse his anti-psychotic medication. When he needs to be hospitalized, he usually does not object or exercise his right to deny Laura access to his medical caregivers and information.

For the past two years most of his medical bills have been covered by Medicare disability. He lives minutes from excellent psychiatric care at Johns Hopkins University. He is not homicidal or suicidal.

Despite her relative good fortune, Laura says she can never move forward because her son never stops dying. “Twice a year, right in front of me, he disappears into psychosis, and there is very little left of who he is. Then medicine resurrects him for a few months, I have much of my child back, then he dies again.”
Although she mourns the life Zac has lost — sports, pals, girlfriend, college — at 49, she also wonders: “What happened to my life?”

AS HIS WORLD SHRANK, SO DID MINE’

In 2008 Zac was having what Laura thought were normal teenage problems. He totaled the car. He quit baseball. He broke up with friends. He smoked weed. She called it “the summer from hell.” But it was a season that never ended.

The family — Laura, Zac and his older sister Leah — moved to Maryland from a small town in Illinois in 2004. Laura had gotten a good job as a software trainer. They rented a three-bedroom brick townhouse just north of the Baltimore line.

Zac was popular, athletic, musical, charismatic — “a bit of a ladies’ man,” Leah recalls.

That summer, Laura noticed one of Zac’s eyes was fluttering. His hands trembled. He lost sense of time. He threw fits over nothing, and broke things. He said he saw no point in celebrating his 18th birthday. He hid in the basement, and covered his face against germs.

His doctor sent him to a therapist, who sent him to a psychiatrist, who sent him to a specialist, who diagnosed obsessive-compulsive disorder. Several experts told Laura the problem was behavioral; she should set expectations and not encourage fantasies.

But Zac’s symptoms got worse. He’d sleep 14 hours a day and lie in the shower for an hour under cold water. He was paranoid — hence the knife under the pillow — and when Laura got home from work, the front door always was dead-bolted from the inside.

Once, Zac opened the door but didn’t recognize her. Another time, she had to break a window to get in. When she went back to her car a few minutes later, he locked her out again.

After he decided that the family dog was “contaminating” the household, Zac opened the door and let him escape.

Sometimes he stood stock-still in the middle of a room for several minutes. Sometimes he walked with a stiff, neurologically-impaired gait that Laura thought of as “Frankenwalking.” They were classic symptoms, and the doctor confirmed it: Zac was psychotic.

Laura’s employers, she says, didn’t accept the constant interruptions and sudden departures. A supervisor dismissively called Zac “Laura’s little problem” in front of her team, and privately told her, “No one gives a s—.”

She quit one job, then another and another, to be with Zac, who stayed home from high school more often than he attended.

Her own mental health deteriorated. She had panic attacks, couldn’t sleep. She felt isolated. “I wished he still played rugby, baseball. That he still had his old friends. What he gave up, I gave up. As his world shrank, so did mine.”

But, she says, “I told myself I had to get over what I wanted. My attitude was, ‘I’ll enjoy nothing while he enjoys nothing.”’

She was stunned by the ignorance of mental illness. She was asked how many different personalities Zac had (confusing schizophrenia with multiple personality disorder); if he was a genius (an idiot savant), and, after one of several shooting sprees by a mental patient, “Does he have a gun?”

“My attitude was, ‘I’ll enjoy nothing while he enjoys nothing.’”

Bills piled up — for lawyers (Zac was busted twice for pot and once for heroin), ambulances and co-pays. She had to hire people to sit with Zac when she was working, to drive him to appointments and to do medical and insurance paperwork. “We needed a staff of three to keep a household of two afloat,” she says.

The disease never went away. If Zac stopped taking his meds — because of side effects or because he felt cured — Laura knew a breakdown was coming, just not when. She asked a psychiatrist what triggers a breakdown. Change, he said: “The stress of daily living.”

Out of the ward, down the aisle

A WEDDING AND HOSPITALIZATIONS

In early 2012, Zac stopped taking clozapine, an antipsychotic with many unpleasant side effects. In April, he announced, “I’m crippled,” and slipped into bed in the middle of the day. He complained of pulverized ankles, a brain tumor and a broken back. “I’ll get up when I’m healed,” he told Laura.

He virtually quit eating, because he didn’t trust anyone to bring him uncontaminated food, and drinking, because the water supply was poisoned. He used the toilet only if Laura helped him there.

He smelled. He refused to change clothes. His dehydrated lips were crusty and cracked. “I sat by his bed, putting ice chips in his mouth and wiping his face, begging him, ‘Make a good decision for yourself. See a doctor,’” Laura recalls. But he was 20. She couldn’t make him.

Two weeks later, she slipped out to the courthouse to appear before a judge, who ordered Zac hospitalized for evaluation. Police came and escorted him — shaking, weak, filthy — into a squad car.

But he was not treated for another 13 days. There were two hearings at the hospital, one to determine if Zac was competent to make decisions (no) and the other to determine if he was sick enough to be forcibly treated (yes).

Zac spent three months in the hospital. Laura’s inability during that time to help plan Leah’s wedding epitomized what the mother calls “the sick kid syndrome. He gets all the attention.” (Two years later, on the day Leah went into labor, Laura was rushing Zac to the hospital.)

In July, Zac was released. He was able to put on a suit and walk his sister down the aisle. He seemed fine.

In August he moved with friends into an apartment.

In October he stopped talking olanzapine, a powerful antipsychotic that he said was making it hard to swallow.

In November, claiming he had spiders in his throat and stomach, he was readmitted to the Johns Hopkins schizophrenia unit. It was his 10th hospitalization.

A home of his own

’SCHIZOPHRENIA IS NOT A CASSEROLE ILLNESS’

Laura Pogliano sits at her dining room table, surrounded by her old life — photos of Zac in his baseball uniform, with the dog, with his girlfriend — and her new one — stacks of financial and medical records.

She says she blew through the $220,000 she had in the bank on Zac’s care, and probably another $80,000 in earnings. She lost a house she owned in Illinois to foreclosure. She drives a 12-year-old Mitsubishi with 100,000 miles. She says she’s $150,000 in debt.

Zac comes up from the basement, where he spends most of his time playing video games and listening to music.

He greets his mother’s guest with a polite hand shake. But as he does so he ducks, as if something were falling from the ceiling. His affect is flat. He asks his mother for some money to get cigarettes. She agrees, and reminds him, “Put on your coat!”

“He shouldn’t smoke,” she says, “but he has so few pleasures.”

Laura dotes on Zac — babies him, really, even though she knows he needs to be more independent.

She says that when he’s on his meds — he now gets an injection at a clinic — he’s funny, charming and considerate. When she asked him the other day what he wanted to do, he said, “Just spend some time with you.”

These qualities are not so apparent to others. His sister says the old Zac’s dry sense of humor rarely appears: “Medication takes that light out of people’s eyes.”

Laura has settled into a series of short-commute, limited-term jobs, allowing her to care for Zac. She sees a psychiatrist and takes medication for depression. She says she’s better able to deal with the ups and downs, but she’s lonely. “Who would date this?” she says, alluding to a few extra pounds she’s picked up.

On the table is a folder with contact information for small businesses that might hire the handicapped. But Zac lost his last job at Pizza Hut when he skipped a shift. And, possibly because psychiatrists say he “lacks insight” into his condition, doesn’t want to associate with the mentally ill.

His mother fears for his future. Every time he gets sick, she says, “his brain loses something.”

Her hope is that Zac, like many with schizophrenia, will stabilize as he ages, that maybe after a decade the illness will loosen its grip.

One day her watch will pass to Leah and her husband, Dan, who live in Michigan with their baby daughter. When Dan asked her for Leah’s hand, Laura recalls, “I said yes, on one condition: ‘You have to accept Zac and all the things that come with him. You have to treat him with compassion, always, or I will haunt you!”’

Leah says she feels guilty — why did Zac get sick and not her? — but that if she had to care for him while living hours from an appropriate hospital, “I’d be lost.”

This month, Laura faces another potential crisis: Zac is moving out.

“Who’s going to come to a fundraiser for my son?”

They’ve been quarreling. He’s eager to go; she’s decided it’s time. She found him an apartment three minutes away. A case manager will visit weekly, and a nursing assistant will check in three days and administer medication. Laura will cover the other days.

“He has to get out from under my wing and make friends on his own,” she says, sounding a little dubious.

After six years, she also puzzled by the indifference or hostility to mental illness. She might understand people’s reaction to the mentally ill — mysterious disease, atrocious symptoms — but what about their relatives? Why have autism advocates been able to mobilize public support, and not families of the mentally ill?

This year, for example, Maryland rejected legislation that would have made it easier for families to force mentally ill relatives into treatment.

She thinks it’s this: We see only the upsetting behavior and blame whoever seems in charge.

“Schizophrenia is not a casserole illness,” she says — no one is bringing food to the door. Nor are they staging fundraisers, as they do for cancer patients. “Who’s going to come to a fundraiser for my son?” she asks bitterly. “To them, he’s a problem.”

Of all the costs borne by Laura Pogliano and millions like her, the one of not caring may be the cruelest of all.

A CBS news story about Laura and her family can be viewed here. 

 

 

Feeling Another’s Pain: Father Pens Poem About Stranger Who Froze To Death

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No one knew why he pulled away

And curled up in a ball in his room where he stayed

What’s wrong, his father and mother said

I’m hearing strange voices inside of my head

Ronald Hunter Jr. froze to death last week in Buffalo, New York.

As reported by Buffalo News reporter Lou Michel, the 21-year-old Hunter was homeless and mentally ill when he died from hypothermia alone and disoriented in two-degree weather with a wind chill that hit 20 degrees below zero. A surveillance video camera on a nearby building captured his final moments in a desolate section of a business park. He had removed his jacket and was trying to take off his shirt.

His father told the newspaper that Hunter first began acting strange shortly after he turned eighteen. “I found him curled up in a ball in the corner of a bedroom, and I said, “What’s wrong, baby?”

“I’m hearing voices telling me to kill myself,” he replied. His parents called crisis services and they diagnosed him with schizophrenia and behavioral disorders. “But because he was eighteen, it was up to him if he wanted help.”

When Chester Ray Maternick read the Buffalo newspaper account of Hunter’s death, he began to weep.

  Maternick, a 60-year-old U.S. Defense Department veteran of the Afghan War, had never met Hunter but the Charlottesville, Virginia father was upset because he also has a son with a serious mental illness. A regular reader of my blog, Maternick alerted me about Hunter’s death after reading about it on the Treatment Advocacy Center’s website.

“The story hit me real hard because as I read it, I thought of my own son and so many other sons and daughters out there who struggle every day with serious mental illness — this could have been any one of them…My son walked out of the house in January 2010 and disappeared for ten days before he snapped out of it.

During the time he was gone, he stayed in an abandoned house and a baseball dugout on a Little League field. “This story hit me hard because of how incredibly alone Ronald Hunter must have been. It is almost as if Society at large just abandoned him.

How advanced a society are we when things like this can still happen?”

After reading about Hunter’s death, Maternick felt inspired to pen a poem that he called “The Ballad of Ronald Hunter Jr.” He sent it to reporter Michel and the Buffalo newspaper printed it along with a story about Maternick and his son, Andrew Neil Maternick, now 26.

While the senior Maternick was serving our country in Afghanistan from 2012 to 2013, Andrew had a psychotic episode and stabbed his younger brother in the arm. He spent eight months in a Virginia jail before being found not guilty by reason of insanity. He currently is in a state hospital receiving treatment for schizo-affective disorder and post-traumatic stress.

Wanting to do something to help change our system, Maternick established a Facebook page called Help Not Jail with the mission of “stopping the criminalization of those who suffer from mental illness and emphasizing getting them help.”

I often write about the importance of us sharing our stories. It is one way we can bring about necessary reforms.  Maternick’s actions remind us that we are not alone in our efforts to stop preventable tragedies. All of us who have a mental illness or who love someone who does are on the same path. We need to fix a broken system that causes unnecessary suffering and deaths.

Robert Hunter Jr. should not have died. No one with mental illness should freeze to death on the streets. We need to create a well-funded, inclusive mental health care system that provides adequate services to those in need. We shouldn’t have homelessness in such a rich country. We also need to pass sensible laws that acknowledge that when someone is severely mentally impaired, not intervening when they put themselves at the risk of death is a cruel act.

 

The Ballad of Ronald Hunter Jr. 

By  C. R. Maternick 

No one knew why he pulled away

And curled up in a ball in his room where he stayed

What’s wrong, his father and mother said

I’m hearing strange voices inside of my head

 

He was just eighteen not sure of himself

It was up to him if he wanted help

For acting strangely and health quickly sinking

A disease of the mind that crippled his thinking

 

Mom, I love you, the last words he said

With a hug and a nod he left with a friend

Determined to make it get a job, pay the rent

Downtown in Buffalo in a shelter time spent

 

A stiff wind rides this code blue night

To minus twenty no warmth in sight

Only a camera’s lens saw it all

This homeless man stand, then fall.

 

Body overheated on this coldest of nights

Trying to find a way to get inside

Shirt unbuttoned his jacket shed

Won’t be long before he’s dead.

 

On the ground in this industrial complex

Dwindling mist from his last breath

On this cold and hard concrete he lay  

Not far from the Bridge where Bailey crosses Broadway

 

Why did he laugh what made him cry

So many questions, he didn’t have to die.

The youngest of seven, his life ended sooner

The name of this man was Ronald Hunter Jr. 

 

In this country of gold and rich choices

Not many cared about this man who heard voices

The youngest of seven, his life ended sooner

The name of this man was Ronald Hunter Jr.

 

Jessie and Glenn Continue Talking About Mental Illness

 

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The release of RESILIENCE, the memoir that I helped Jessie Close write, gave Glenn and Jessie Close the opportunity to appear together on the Dr. Oz show to discuss mental illness. Here is a a transcript of that show as reported and posted on RECAPO.

I’m thrilled that Jessie is using the release of the book to show the public a different face in the media than the one they usually see associated with mental illness.

Dr Oz: Glenn Close & Her Sister Jessie      FROM RECAPO

As Dr Oz so kindly put, Glenn Close is one of the finest actresses of her generation. But it’s what happened off screen that truly inspired Dr Oz and those that know more about Glenn Close than the characters she played. She was born into a privileged family with a lineage of wealth. Glenn’s mother and surgeon father frequently moved Glenn and her three siblings to serve as missionaries in a cult-like religious movement. It was Glenn’s sister Jessie who seemed to have the hardest time with her family’s unconventional lifestyle.

Jessie was estranged from her parents and struggled with decades of addiction, promiscuity, divorce, and destructive behavior that eventually turned into suicide attempts. At the age of 50, Jessie began intensive therapy for bipolar disorder and Glenn and Jessie were ready to share their story with Dr Oz.

Dr Oz: Glenn Close On Mental Illness + Jessie Close "Resilience"

Dr Oz: Glenn Close On Mental Illness

Dr Oz welcomed Glenn to his show who explained that in generations of her family, they never talked about the mental disorder. She said what’s hard to come to terms with is the fact that they thought Jessie was just the wild child and was irresponsible.

A few years ago, Jessie approached her sister telling her that she was going to take her own life. Glenn said it was an “emotional explosion” for her. She said before that, she would just come in and out of her sister’s life and didn’t know she had problems with alcohol or drugs, but at that point she knew she had to help her.

Glenn said her family had misunderstanding and some stigma themselves, and were even scared when they first found out what was going on with Jessie, but said it was “the beginning of an amazing journey” for all of them.

Jessie has since recovered with the help of her family and professionals. Glenn said she wouldn’t be where she was today if it wasn’t for Jessie and she’s most proud that Jessie had the courage to talk about it. She said she’s also proud that her sister has owned her illness, stays connected, talks to her doctor, and takes her medication. Glenn said Jessie has become a productive, amazing human being. “She is not her illness. She is my beautiful, beautiful courageous sister,” Glenn said.

Dr Oz: Jessie Close ‘Resilience’ Book

Dr Oz then welcomed Jessie to come out and join them on the show. Jessie actually wrote a book calledResilience about her journey with her sister. Dr Oz applauded her for being “brutally honest.” Dr Oz said a lot of people don’t truly know what bipolar means and Jessie said you experience mania, which makes you very high and you don’t need sleep. But then you crash into a depression, which is the complete opposite where you’re in the fetal position a lot. Jessie said she drank through both her highs and lows, but she continues to take her medication in order to never experience depression like that again.

Dr Oz said 50% of people with bipolar depression probably attempt suicide. Jessie said she had been sober for four years but she was still suicidal and had developed a voice in her head that she called “the creature” that kept saying “kill yourself.” She thought she would have to obey the voice, but her children mean everything to her and she knew she couldn’t do that to them, so she asked her sister for help.

Dr Oz: Glenn Close & Mental Illness In ‘Fatal Attraction’

Dr Oz wondered why Jessie didn’t talk about her illness when she was younger and Jessie explained that people didn’t know about bipolar disorder then. She said then it was called manic depression and she never heard about it. Dr Oz said we hear about it now, but we still don’t really know what it is. Dr Oz said a lot of people who have mental disorders don’t want to take medication because they think it will rob them of the “euphoria” of life that comes during the high points. Jessie is living proof that it works.

Dr Oz then brought up Glenn Close’s character in Fatal Attraction who, without a doubt, had some sort of mental illness. Glenn said she was asked for three years to talk to the American Psychiatric Association because of that character, but said even in doing her research for the character, it never came up that she might have a mental disorder.

Glenn said to have someone with a mental illness as the antagonist is very easy. She ignorantly was a “textbook version” of a person with a mental disorder that she knew nothing about. She said it was only after that that doctors in the field told her they use the character to illustrate a certain mental disorder. She doesn’t regret it, however, because it brought up a lot of other issues. She said to make it a hit movie, they made her character into a psychopath, which was, in a way, a betrayal of who that character was.

Dr Oz: Ending The Stigma About Mental Illness

Glenn and Jessie were on the show because they want to end the stigma about mental illness because it doesn’t just stop with one generation. Jessie’s son actually has schizophrenia. He was sent to the hospital when he was 19 years old and stayed there for two years in a halfway house type of situation. But he’s now married and is a thriving artist.

Glenn said she wanted a world where our government realizes the enormity of the problem, knowing that one in four suffer in some way. She wants a world where each community has a place where people with mental illness can go. Dr Oz shared that approximately 60 million people have a mental illness of some form, so we have to stop thinking of it as something to be ashamed of.