Care First

Laura Pogliano lost her son, Zac, twice. She’ll tell you this freely, looking you straight in the eye with tears rolling down her cheeks, defying you to look away. She’ll tell you both losses were traumatic, but they were different. She’ll describe how one unfurled over the course of six and a half years as her once vibrant son slipped into the ever tightening noose of schizophrenia, while the other happened suddenly, in January 2015, as he lay sleeping in his Towson apartment.

Ask her what happened in between and she’ll tell you about the year he called 911 at least 25 times because of his delusions—which included being shot in the head and choking on spiders—and how, at one point, he became so paranoid he slept with kitchen knives under his pillow to prevent an attack. She’ll inform you that she went broke—“gladly,” she’ll say—paying her son’s medical expenses, and she’ll relate how long it took to find good care for him, including a story about a clinic in Idaho that bullied him and called him lazy. She will fume at the scorn heaped upon her from others, including a therapist who blamed her son’s illness on bad parenting and a supervisor at work who dismissed her ordeal by saying, “Golden boy gone bad. Same old story. Get over it.”

But she also will praise the many devoted health care professionals who eventually formed the core of her son’s treatment team, and she will tell you about the compassionate way in which a Baltimore County police officer talked her son out of a delusion. She’ll tell you that, coincidentally, it was that same officer who responded to her call asking if someone could enter her son’s apartment and check on him because she hadn’t been able to reach him for a few days. She’ll note that her son was found dead in his bed, with his arms folded across his chest, the way he always slept. She’ll say that his cause of death is listed as cardiomegaly—or an enlarged heart—but that she knows it’s more complicated than that. Whether directly or indirectly, schizophrenia killed her son. And then—and this is the most important part—she’ll tell you how devoted she is to making sure it never happens to anyone else ever again.

Zaccaria “Zac” Pogliano was born Aug. 1, 1991—“a healthy, fat baby,” says Laura, as she sits at the dining room table in her Loch Raven Village townhouse, spring sunlight pouring in through the windows. Her sister, Angie, who moved from the Poglianos’ native Chicago last year to help in the wake of Zac’s death, bustles around the kitchen preparing a lunch of toasted salami and cheese hoagies, chips, and pasta salad. Both women agree that Zac was an exceptionally sensitive child with a strong moral compass, but was otherwise typical.

“There’s so much judgment around it that you don’t see in other illnesses.”

“One thing [doctors do] is try to go back and say, ‘Was there anything wrong? Was there something we should have seen?’” explains Laura. “He was fine. He was healthy. He ate and slept. He didn’t have any irregularities. He had no childhood illnesses. There was really nothing to say.”

While there might not be anything to say about Zac’s early health, there’s plenty to say about Zac himself, whom Laura describes as having a “peace, love, hippie flare.”

“He was a little social-justice type person, and he was that way after he got sick, too, even when he was paranoid or psychotic,” she says. “He’d say, ‘I’m the last peaceful man on Earth.’ He would cry for the rape victims of the world.”

She remembers that when Zac’s fourth grade teacher made racially insensitive remarks in class, Zac responded by refusing to do homework for the woman.

“I had to go to the school and say, ‘You have to apologize to him. He’s on a one-man boycott of you, and I can’t get it to end because you don’t deserve homework as far as he’s concerned!’”

This is the Zac that his family—which includes an older half-sister, Leah—wishes more people knew—the one who played baseball, drums, and piano, who had friends and a girlfriend, and who would volunteer to partner with social outcasts on school projects. But the truth is, as his illness worsened, all of that fell away, leaving Zac with what Laura calls “a medical life.”

Says Laura: “Honestly, when I cry about my child now, it’s not because he passed away, because all of us are going to pass away. It’s because of all the things he suffered while he was here: friendlessness, hopelessness, his sense of being abandoned. . . . All that stuff comes with long-term illness.”

The first hint that anything was amiss came in the summer of 2008. Zac had just finished up his junior year at Calvert Hall College High School when, in the course of a few weeks, he totaled the car, quit the baseball team, dumped all his friends, and began suspecting people—including Laura—of dishonesty.

Though Laura knew something was off, she initially attributed his behavior to typical teenage angst. “I started thinking, here comes the bad year,” she says with a rueful laugh. But by the end of the summer, Zac’s behavior had only become stranger. He had frequent temper tantrums followed by periods of intense moroseness. As his birthday approached, he told his mother, “I don’t even know why I’m having a birthday. There’s no point in birthdays. There’s no point in getting older or living your life.”

In August, Laura took Zac to see the first of many psychiatrists, who provided the first of many misdiagnoses and prescribed the first of many largely unhelpful drugs. Ultimately, in 2011, doctors settled on a diagnosis of schizophrenia, which the National Institute of Mental Health characterizes as “a chronic, severe, and disabling mental disorder characterized by deficits in thought processes, perceptions, and emotional responsiveness.” But to get to that point required many dead-end trips through a mental health system Laura calls “disconnected, jarring, and hostile.”

“Over and over I would say, ‘Oh my gosh, how could my son navigate this himself?’” she says.

And yet, that is, in many ways, what the law asks patients to do. In Maryland, starting at age 16, individuals have the right to make their own decisions regarding psychiatric care, a sizable obstacle in providing treatment to the mentally ill, who often don’t realize they are sick. Furthermore, even if they were to seek treatment, figuring out where to get care—or how to pay for it—would remain challenging.

Since the passage in 1963 of the Community Mental Health Act, the federal government has phased out its once pervasive system of state-run mental hospitals in favor of private or community-based facilities. The act—a response to the widespread abuse of patients in government facilities—was well intentioned, but Laura believes it went too far. “Instead of fixing the system, we dismantled it,” she says. Now, options for those without private insurance and/or immense wealth are limited. This is one reason it is estimated that up to a third of the homeless population suffers from some form of mental illness, and that a Justice Department report from 2006 found that “more than half of all prison and jail inmates had a mental health problem.”

Indeed, even Laura, a fully competent adult who has worked as a training consultant for organizations including the U.S. Navy and The Johns Hopkins University, found herself overwhelmed. So relentless was the stress of her son’s illness that she developed a panic disorder, severe depression, and a nervous tick.

“When I cry about my child now . . . it’s because of all the things he suffered while he was here.”

“She went through this with him,” says Krista Baker, the program supervisor for outpatient schizophrenia services at Johns Hopkins Bayview, where Zac received treatment during the last two-and-a-half years of his life. “When I first met her, she was struggling with her own reaction to what was happening, and she sort of developed this head-twitch-nod thing. So we had this series of meetings about it. I was like, ‘You have to get better because you have to be able to provide the support to him.’”

Heeding Baker’s advice, Laura sought therapy for herself and began taking antidepressants, a regimen she continues today.

“I got better,” she says. “In a handful of weeks I was back at work. That’s not the same as being diagnosed with a chronic, progressive debilitating brain disease like schizophrenia.

“I mean, he was never really well,” she continues with a sigh. “He got sick and then he got sicker. Each time it takes more and more medicine to restore competency. Each time they lose a little bit more. They don’t come all the way back, especially when you’re floridly psychotic, like he was. He had periods of recovery . . . but with the stress of daily living, he would have another episode.”

According to Baker, Zac’s chances of improvement were inhibited by his intermittent use of illegal drugs and resistance to some treatment options.

“The next step was clozapine,” says Baker, referencing the antipsychotic often used to treat schizophrenia. Zac had been prescribed the medication before, but hadn’t liked it. As a result, says Baker, “he adamantly refused to ever let us initiate it.”

With no more medications to try, Zac was discharged from his 13th and final hospitalization in mid-September 2014. In November, Laura acquiesced to his constant demands and paid for him to move into his own apartment nearby, hiring a house helper and house cleaner to perform chores and monitor his behavior.

“I just decided . . . for however long he has, I’m going to set him up and let him be the cool guy, let him have a normal 23-year-old’s life,” she says.

His death from heart failure came as a shock, of course, especially since, to monitor how his medications were affecting his overall health, Hopkins regularly administered electrocardiograms, none of which detected any irregularities. And yet, there was a part of Laura that had been bracing for his death for more than six years.

“When [the police officer] first told me he was passed I said, ‘Well, that’s just about enough of that then,’” recalls Laura, tears welling in her eyes.

“I mean that kid had such a tough time. That was plenty. Enough is enough. He really, really suffered, and he was looking at 40 more years of it.”

What’s striking about the Poglianos’ story is how common it is. According to the National Alliance on Mental Illness, more than 16 million people in the U.S. have a serious mental illness. Factor in other mental health issues, such as depression, anxiety disorders, eating disorders, and posttraumatic stress disorder, and the number further balloons. Schizophrenia alone affects about 3.2 million people. That’s more than are afflicted with Parkinson’s disease, multiple sclerosis, and amyotrophic lateral sclerosis (ALS) combined.

But for all their ubiquity, severe mental illnesses remain mysterious. For instance, there is no diagnostic test for schizophrenia. And beyond identifying some contributing factors—genetics, brain structure and chemistry, prenatal and/or birth-related difficulties, extreme stressors/trauma—medical experts don’t understand why one person develops schizophrenia and another doesn’t. It is also difficult to know how treatment will affect patients. Psychiatric drugs can cause severe side effects, and as a result, medication is administered with a “go low and go slow approach that is trial and error,” says Baker. While prudent, this also means that some patients can take years to stabilize.

Says Laura, “Every time I meet a person [with mental illness] who’s doing well, there’s a million factors—and luck—that made it happen: time, money, quality care, wraparound services, a supportive family who doesn’t give up. Most families don’t have all that. They might have one piece or two pieces [but] they don’t have all five or six things going for them.”

Even before Zac’s death, Laura began soliciting donations online and distributing them to fellow caregivers who were struggling to pay bills. Now, she has formalized that practice as the nonprofit Parents for Care, which she runs with Angie. In addition to handing out donations, the organization advocates for mental health law reform, runs a monthly support group, and partners with the Johns Hopkins Schizophrenia Center to get medical information and resources to caregivers. Eventually, Laura and Angie say they’d like to build affordable custodial care homes for the mentally ill in Baltimore and beyond.

If the plans seem ambitious, that’s because they are. Laura has no patience for anything less.

“I really believe that the way we treat mentally ill people in this country is the human rights crisis of our times,” she says. “There’s so much judgment around it . . . that you don’t see in other illnesses. . . . [People with mental illness] are somebody’s boyfriend, somebody’s husband, somebody’s wife, mother, grandma—all unlucky enough to get sick.

“I’m never going to stop talking about it,” she declares. “It’s too important.”