Overcoming the shame

SPEAKING UP HEALS OLD WOUNDS

Chapter 4

Jonathan Leavitt on stage during rehearsals. 

(Photo: Steven St John for USA TODAY)

Some people with mental illness are fighting against stigma in surprising ways.

Canadian David Granirer, a comedian who has long suffered from depression, teaches people with mental illness to speak out through comedy. He calls his class Stand Up for Mental Health.

In the past decade, Granirer has taught comedy to 400 adults with mental illness throughout North America, both as therapy for them, as well as a way to debunk stereotypes of the mentally ill.

"How often do you hear the words 'hilarious' and 'schizophrenic' in the same sentence?" asks Granirer. "Audiences see people with labels like bipolar and schizophrenic, and see them as funny and likable and courageous."

Jessica Dawson was diagnosed with schizophrenia. She recently participated in Stand Up for Mental Health, a program that teaches people with mental illness to perform stand up comedy routines.

(Photo: Jim C Jeong for USA TODAY)

Granirer says one of his most courageous students has been Jessica Dawson.

Dawson, 42, had never enjoyed laughter.

She was laughed at too much as a child. For much of her life, laughter sounded like mockery, and jokes felt like stones thrown by bullies. For Dawson -- who was suicidal by age 10, had a baby at 16 and was diagnosed with schizophrenia at 22 -- there often wasn't a lot to smile about. Dawson's parents and doctor hid her diagnosis from her for four years, afraid that the news would prove too upsetting.

Yet in 2006, Dawson found herself on stage, telling jokes, and getting laughs, while talking about the most painful episodes in her life – ones about which she had always been ashamed -- such as hearing voices and undergoing treatment with electroconvulsive therapy.

"Before I had electroshock, I thought I was Jesus Christ," she quipped in her act. "Afterward, I thought I was a toaster."

Learning to see her life in a new light proved to be powerfully healing, Dawson says.

"It changed my life," says Dawson, who lives in Canada's British Columbia. "Having the fantasy of being a star sort of lifts you momentarily out of thinking about how low you are on the societal scale of acceptance. . . I'm no longer buying into the shame, and I'm giving others permission not to buy into the shame."

While standup comedy isn't for everyone, the program provides an important service, Granirer says, by allowing people to see that people with mental illness aren't that different.

With so many people with mental illness "in the closet," the dominant image of people with mental illness has often been negative – the homeless person on the street, the deranged young man with a gun, says Patrick Corrigan, a professor of psychology at Illinois Institute of Technology.

Research shows that the most promising way to dispel stereotypes is to meet someone with mental illness face-to-face, Corrigan says. These sorts of encounters are two to three times as effective as educational programs.

"The way we've diminished the stigma of being gay is by having brave men and women come out," Corrigan says. "It wasn't watching anti-stigma programs in middle school."

Few public figures with mental illness today speak about it openly.

Football player Brandon Marshall, a wide receiver for the Chicago Bears, is an exception. Marshall, 30, was diagnosed with borderline personality disorder, which can cause mood swings and emotional outbursts, in 2010.

Chicago Bears wide receiver Brandon Marshall was diagnosed with borderline personality disorder, which can cause mood swings and emotional outbursts, in 2010.

(Photo: Jerry Lai, USA TODAY Sports)

Marshall says he decided to speak up to help dispel the stigma around mental illness.

"So many people are trying to hide something that needs to be talked about, and if it's talked about, so many lives will be saved," says Marshall, who created the Brandon Marshall Foundation to help others with mental illness. "Where we are at is where the cancer community and HIV community were 25 years ago."

While Marshall says he has taken some flack for speaking out -- including trash talk on the football field -- he says the positive responses have outnumbered the negative.

“'Where we are at is where the cancer community and HIV community were 25 years ago.'”

NFL PLAYER BRANDON MARSHALL

"The good part has been having a platform to help people," Marshall says. "One out of four of us are suffering from something."

Marshall says learning from other people with mental illness has given him hope. "You can get better," Marshall says. "There is light at the end of the tunnel."

Hakeem Rahim, who has bipolar disorder, once felt he had to hide his condition, which surfaced when he was a freshman at Harvard University. Instead of calling in sick when he was having a tough day emotionally, he would tell his employer that he had the flu. Eventually, he just didn't feel comfortable hiding his diagnosis.

Rahim now works full-time giving educational talks, mostly about mental illness. A woman called him after seeing him speak at a college, confiding that she was suicidal. Rahim, 33, was able to find her help.

"These stories are so important," says Rahim, who says that surveys conducted after his talks suggest that audience members were more willing to talk to others if they felt depressed or anxious. "Part of my goal is to share what I learned. Hopefully, if they learn it earlier, they can get help sooner."

Hakeem Rahim hid his bipolar disorder for years before finally sharing his diagnosis. He now works full-time giving educational talks, mostly about mental illness.

Research suggests the country has made fitful progress in fighting stigma.

Large national surveys conducted in 1996 and 2006 found that Americans increasingly understand mental illness to be a biological condition, rather than a moral failing. And the study found Americans have become more accepting of people with depression.

Over the same period, however, Americans grew less willing over time to befriend or work with someone with schizophrenia, and more inclined to see people with the disease as violent and dangerous. Researchers have not conducted more recent surveys.

It's likely that Americans' attitudes toward serious mental illness have only hardened since the shootings at Virginia Tech, Newtown, Conn. and Santa Barbara, Calif., says psychiatrist E. Fuller Torrey, founder of the Treatment Advocacy Center, which focuses on patients with severe mental illness.

A 2012 study found doctors less likely to prescribe medications for heart disease and other ailments to people with mental illness. Other studies have found that doctors are less likely to recommend surgery after a heart attack for people with mental illness, or hospitalize them after an emergency department visit for diabetes.

Dawson says she no longer feels the need to hide her diagnosis.

At one time, she was afraid to even ride the bus, because she worried that other passengers could tell she had schizophrenia. After taking the stand-up class, she learned to joke with people on the bus, defusing her fears.

Dawson says she wishes that story had a happier ending. She's largely home-bound today, unable to take public transportation or even leave the house, due to rheumatoid arthritis that makes it difficult to walk. Although she has a wheelchair, her apartment complex won't allow her to install a ramp. Dawson says can't afford to move to a more accessible apartment.

Yet Dawson says she remains forever changed by her experience onstage, which gave her the confidence to write to local politicians about important issues, take college classes for the first time and respond to online bullies who make fun of those with mental illness.

As for her childhood tormentors, Dawson says, "All those people who said I had no sense of humor? They were wrong."

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Working for change


ADVOCATES CHIP AWAY AT DISCRIMINATORY POLICIES


Chapter 3




Some say the designers of the Medicaid and Medicare rules had good intentions.
Congress didn't want to pay for long hospitalizations for psychiatric patients because the goal was to move people out of big asylums and into communities, Kennedy says.
Others note that the rules serve a useful purpose today because they encourage states to focus on outpatient treatment. "They create incentives for states to serve people where they ought to be served," says Dennis Jones, the former mental health commissioner for Indiana and Texas.
In 1963, Kennedy's uncle, President John F. Kennedy, signed legislation to create a network of community mental health centers across the country.


“'Every parent I know has to fight for treatment for their child.'”
LAURA POGLIANO
But the nation never followed through, Manderscheid says. While many of the old hospitals have closed, the country built fewer than half of the planned 1,500 mental health centers. Hospital beds, meanwhile, have shrunk from a peak of more than 500,000 in the 1950s to just over 100,000 today.
"It's an unfulfilled promise," Glover says. "There needs to be a balance of community based-services and inpatient care."
Over the decades, Congress has relaxed Medicaid's policies somewhat, Honberg says. In the 1970s, Medicaid began paying for psychiatric hospitalizations for patients under 21. In the 1980s, it began paying for psychiatric hospitals with fewer than 16 beds.
But Congress is unlikely to completely eliminate the unequal Medicaid rules, Glover says. Paying for unlimited inpatient psychiatric hospitalizations would likely add several billion dollars to the Medicaid budget — a non-starter for many in Congress, he says.
But the Affordable Care Act is paying for a pilot study of what happens when Medicaid further relaxes its payment rules.
The $75 million study provides 11 states and the District of Columbia with federal Medicaid matching funds for people who need emergency inpatient psychiatric care. Some states offer additional services. Early results from the national pilot study, released in December, show that patients had relatively short hospital stays — an average of eight days — with few needing to be rehospitalized within the same year.



  By denying hospital care to the mentally ill, Rep. Tim Murphy (R) says Congress
                                                effectively tells the mentally ill they are less deserving of a decent life than others.

                                             Murphy's bill also aims to help more people get short-term                                                            inpatient care.
His Helping Families in Mental Health Crisis Act would allow states to receive Medicaid matching payments for adult psychiatric hospitalizations, Murphy says. The bill has won support from a number of medical and mental health organizations, including the American Psychiatric Association, the American College of Emergency Physicians and the National Association of Psychiatric Health Systems.
Rep. Ron Barber, D-Ariz., also has introduced legislation to expand hospital care. His bill would eliminate Medicare's 190-day lifetime limit on psychiatric hospital care.
"It's a gaping hole we've got to fill," Barber says.




Yet at a time when Congress is deeply divided -- and members are preparing for an election -- mental health advocates say the bills face an uphill battle. Even if the bills don't pass as written, Manderscheid says he hopes Congress will craft a compromise to make some progress in providing care.
Laura Pogliano of Towson, Md. has often paid out-of-pocket for the care of 22-year-old son, who has schizophrenia. He frequently has needed care that wasn't covered by insurance. Other times, he couldn't wait for a public hospital bed to open up.
In less than three years, Pogliano says, she exhausted all $250,000 of her life savings. She lost her house when she chose to pay his hospital bills instead of her mortgage payments. "Every parent I know," she says, "has to fight for treatment for their child."








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Lost in darkness

MANY WAIT NEARLY A DECADE FOR TREATMENT

Chapter 2

Tracy Love suffered from mental illness for 20 years before getting help.

The delay led to frequent panic attacks, drinking and drug use, abusive relationships, three suicide attempts and a felony conviction.

After Love's first suicide attempt 30 years ago, her parents told her to "stop feeling sorry for yourself and snap out of it," she says.

"It was only after I started to get better that I came to find out there is mental illness in my family," says Love, 52, who lives near Rochester, N.Y. "Nobody ever talked about it."

“'If someone had listened to me the way that psychiatrist listened to me in jail. I think maybe my illness wouldn't have gotten that far.'”

TRACY LOVE

Doctors failed to diagnose Love's mental illness, even after that suicide attempt sent her to the hospital. She finally found help in the unlikeliest of places — jail — where Love was incarcerated after stabbing an abusive boyfriend.

A jail psychiatrist, who interviewed her after the arrest, was the first person to diagnose her with major depression and post-traumatic stress disorder, says Love, who credits that doctor with changing her life. The incident cost Love dearly. She lost her job and custody of her 10-year-old son for three years. Although Love has turned her life around and works on a contract basis in mental health, she says her felony record has kept her from finding a permanent job.

"If someone had listened to me the way that psychiatrist listened to me in jail," Love says, "I think maybe my illness wouldn't have gotten that far."

Tracy Love knew her whole life that something was wrong, but she didn’t get the help she needed until she went to jail.

On average, people with mental illness wait nearly a decade to get treatment after symptoms first appear, according to the National Institute of Mental Health.

Nearly 40% of adults with serious mental illness received no treatment in the previous year, according to the 2012 National Survey on Drug Use and Health, produced by the Substance Abuse and Mental Health Services Administration. Among adults with any mental illness, 60% were untreated. Though some people with mental illness don't realize they're sick, others simply can't find help.

It's common for mentally ill patients — who go to the hospital in search of treatment for a psychiatric crisis — to languish for weeks in emergency rooms, says Robert Pierattini, a professor at the University of Vermont College of Medicine and chair of psychiatry at Fletcher-Allen Healthcare in Burlington.

In November, the son of Virginia state Sen. Creigh Deeds, a former gubernatorial candidate, was released from an emergency room because staff there couldn't find a psychiatric bed. Hours later, he stabbed his father, then fatally shot himself. The senator survived and has become an advocate for changing mental health laws.

"If this were cancer, we'd be talking about giving patients the very best treatments," Pierattini says. In mental health, "a peculiarity in the funding formula is deciding how we treat patients."

Funding is so poor and services are so hard to find that many patients can get help only after they've become psychotic, Manderscheid says.

That's akin to treating diabetes only after someone needs a leg amputated, Kennedy says.

Keris Myrick, who has schizoaffective disorder and obsessive-compulsive disorder, says she has experienced the problem firsthand.

Myrick is the former CEO of a non-profit group that tries to bridge these gaps by providing overnight crisis care to patients who need urgent help. These programs are few and far between.

"You go to a hospital and say, 'I'm on the verge of a breakdown.' The hospital will say, 'You're not sick enough,'" says Myrick, former president of the National Alliance on Mental Illness "I said, 'What do you mean I'm not sick enough? I'm trying not to get sick.'"

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A separate and unequal system




PEOPLE WITH MENTAL ILLNESS FACE LEGAL DISCRIMINATION




Chapter 1


Stigma against the mentally ill is so powerful that it's been codified for 50 years into federal law, and few outside the mental health system even realize it.
This systemic discrimination, embedded in Medicaid and Medicare laws, has accelerated the emptying of state psychiatric hospitals, leaving many of the sickest and most vulnerable patients with nowhere to turn.


Advocates and experts who spoke with USA TODAY describe a system in shambles, starved of funding while neglecting millions of people across the country each year.
The failure to provide treatment and supportive services to people with mental illness – both in the community and in hospitals – has overburdened emergency rooms, crowded state and local jails and left untreated patients to fend for themselves on city streets, says Patrick Kennedy, a former congressman from Rhode Island who has fought to provide better care for the mentally ill.
The USA routinely fails to provide the most basic services for people with mental illness -- something the country would never tolerate for patients with cancer or other physical disorders, Kennedy says.





Former congressman Patrick Kennedy: "We have a wasteland of people who have died and been disabled because of inadequate care."
(Photo: H. Darr Beiser, USA TODAY)
"Mental health is a separate but unequal system," Kennedy says. "We have a wasteland of people who have died and been disabled because of inadequate care."
Although most people with mental illness are not violent, the USA's dysfunctional, long-neglected mental health system is under a microscope because of mass shootings in which the perpetrators had serious psychiatric problems. In a series of stories in the coming months, USA TODAY will explore the human and financial costs that the country pays for not caring more about the nearly 10 million Americans with serious mental illness.
Stigma, a common thread in this series, forces many to live in shame rather than seek support, even as their lives unravel. Yet patients who want help often can't find it, says Kennedy, who has acknowledged his own struggles with bipolar disorder and drug addiction.


“'There is no other area of medicine where the government is the source of the stigma.' ”
REP. TIM MURPHY, R-PA.
Stigma even shaped the crafting of the Medicaid law a half-century ago, because Congress didn't want to "waste" federal money on mental illness, says Ron Manderscheid, executive director of the National Association of County Behavioral Health & Disability Development Directors. "People were operating under the belief that mental health was a black hole for money," Manderscheid says.
An obscure provision of the Medicaid law specifies that funds may be used for hospitals treating physical conditions but generally not for mental health, says Tim Murphy, R-Pa., a child psychologist who has introduced legislation to ease these restrictions.
The Medicare law discriminates against those with mental illness, as well, by limiting the number of days that patients can receive inpatient psychiatric care. Medicare imposes no such limits for physical health, says Mark Covall, president and CEO of the National Association of Psychiatric Health Systems.
By denying hospital care to the mentally ill, Murphy says Congress set two standards for health, effectively telling the country that the mentally ill are less deserving of a decent life than others. By forcing the mentally ill to live with sickness, confusion and disability, federal law reinforces the assumption that the mentally ill are incapable of leading functioning, safe, successful lives.
"The federal government has set so many barriers to getting care, which they have done with no other type of illness, and it is wrong," Murphy says. "There is no other area of medicine where the government is the source of the stigma."
Without federal support, states haven't been able to afford to keep their psychiatric hospitals open. States closed 10% of their hospital beds from 2009 to 2012, says Robert Glover, executive director of the National Association of State Mental Health Program Directors.
Private hospitals have reduced their psychiatric beds, as well, because Medicare and Medicaid typically pay less for inpatient mental healthcare than for medical care, says Ron Honberg, national director of policy and legal affairs at NAMI, the National Alliance on Mental Illness.
"It's just pure discrimination," Covall says. "It's penalizing the poor and disabled."
Mental health advocates have had more success reforming the private insurance system.
The Affordable Care Act, for example, requires that health exchanges provide equal mental and physical health coverage.
While in Congress, Kennedy led the fight to require private insurers to provide equal coverage for physical and mental health, resulting in a 2008 "parity" law that applies to policies issued after July 1. Kennedy has joined in lawsuits against insurance companies to force them to comply.


“'If I have diabetes, there is no stigma to that. But if my brain doesn't work, why am I supposed to be ashamed of that?'”
PASTOR RICK WARREN





Pastor Rick Warren, a best-selling author, couldn't get long-term care for his son, Matthew, who suffered from depression for many years.
(Photo: Robert Hanashiro, USA TODAY)
Although Medicare has corrected some of its unequal payments in recent years, it isn't affected by the parity law, Kennedy says.
The federal government hasn't yet issued rules governing how the parity law affects Medicaid, the largest provider of mental health services in the country.
Pastor Rick Warren, a best-selling author, struggled to find long-term care for his son, Matthew, who suffered from depression for many years. "At one point, we were counseled that Matthew needed extended, long-term help in a long-term care facility," Warren told USA TODAY. "When we began to look for one, we couldn't find one."
Warren, founder of Saddleback Community Church in Orange County, Calif., began speaking out about mental illness after Matthew killed himself last year, at age 27. Warren compares the stigma of mental illness to that of AIDS and HIV. In both cases, people are blamed for bringing suffering upon themselves, he says.


​
"If I have diabetes, there is no stigma to that," says Warren, who is making mental health one of his key ministries. "But if my brain doesn't work, why am I supposed to be ashamed of that? It's just another organ. People will readily admit to taking medicine for high blood pressure, but if I am taking medication for some kind of mental problem I'm having, I'm supposed to hide that."


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A home of his own

’SCHIZOPHRENIA IS NOT A CASSEROLE ILLNESS'

Chapter 4

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.

Laura Pogliano talks about her son, Zac Pogliano, who was diagnosed with schizophrenia as a teenager.

(Photo: Eileen Blass, USA TODAY)

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?”

LAURA POGLIANO

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.

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Out of the ward, down the aisle

A WEDDING AND HOSPITALIZATIONS

   Chapter 3

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.

Laura Pogliano waits for her son, Zac, outside of his apartment in May.

(Photo: Eileen Blass, USA TODAY)

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.

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'Summer from hell’

’AS HIS WORLD SHRANK, SO DID MINE’

          Chapter 2

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.

Zac Pogliano as a third grader. 

(Photo: Courtesy of the Pogliano family)

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.'”

LAURA POGLIANO

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.''

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 Chapter 1

The lucky one

DESPITE HARDSHIPS, A MOTHER KNOWS IT COULD BE WORSE

                                                       

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.

Count her blessings: 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?''

 http://www.usatoday.com/longform/news/nation/2014/11/16/schizophrenia-mental-illness-

treatment/18647395/