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Self Control



Carla Beck planted the lemon tree that sits in her front room seven years ago, just after all those cameras were installed in the house. The surveillance was nothing new. Her dentist had already bugged her teeth with radio transmitters and the evil half of Chesterfield County was regularly pawing through her journals. They sent her cryptic messages via church bulletins, license plates and radio hits. She was being pursued. Her heart raced. Her muscles were tense.

Beck had always been an involved mother, but the cameras raised the bar. "I had to show all these people what a good mom I was," she says, laughing a little ruefully. "It seems so weird now." As part of the campaign, Beck and her two young children planted seeds they plucked out of lemon skins left from an afternoon spent pressing fresh lemonade.

Soon after, Beck was diagnosed with schizophrenia, or schizo-affective disorder. The bugs, the secret messages, were all delusions that come along with her disease. Since being treated, she's become active in the burgeoning recovery movement, a philosophy that emphasizes taking control of one's own life and mental illness. But she could just as easily have ended up as many others have, spending their lives in and out of a system that relies on drugs to change lives.

There's hardly a trace of her illness today. Her hair and makeup are immaculate. She accents breezy outfits with beaded jewelry she makes herself. Her demeanor is measured and self-possessed.

Carrying a diagnosis of serious mental illness has changed her life, to be sure, but not in the way most people might expect. Rather than curtailing Beck's ability to lead a productive life, the disease has opened a new career path and a personal mission.

Beck now works in a day center helping others with mental illnesses. They prefer the term mental-health consumer, or just plain "consumer" or "peer." Some of the parents from her children's schools, unaware that Beck is a "consumer," too, say it's good that somebody likes working with "those people."

"Sometimes I just want to tell them, 'I am one of those people!'" she says. Beck credits her new life -- her job, attitude and stability — to the recovery movement, a school of thought that's gained momentum in mental-health policy-making circles during the last five years or so.

The idea is that having a mental illness is a struggle, but a manageable one, like losing a limb or having diabetes. With the recovery model — which originated in the treatment of drug and alcohol addiction — the goal is to recover as much of a normal life as possible, not just to reduce the symptoms with drugs.

The recovery movement has yielded concrete programs and therapies, many of which have been adopted by the public mental health system. As for public policy, it's a position that's been gaining momentum, at least on paper, at the state and federal levels in the last five years.

Then came Virginia Tech.

Seung-Hui Cho, a student who seemed to have been lost in the mental-health system, took 33 lives, including his own, on campus last April. Since the details emerged about Cho and his problems, public discussion on mental health has been dominated by questions of how to prevent a repeat of the tragedy — and the situation that may have led to it.

Specifically, the debate has focused on how to make it easier for the state to force people with mental illnesses into a psychiatric hospital if they seem likely to pose a threat to public safety. For recovery advocates, such forced treatment presents a queasy proposition of curing an illness with a court order and infringing on civil rights.

During the legislative session that ended in March, mental-health advocates were unable to stop lawmakers from making it easier — and in their view more likely — to legally execute forced hospitalizations.

They were, however, able to get recovery-oriented language into the same law. And, perhaps more crucially for them, to keep alive the idea that mental illness isn't a hopeless proposition.

Quietly, people like Beck have formed support groups, loaned their voices to policy-research committees and sought jobs with mental-health agencies, hoping to make the world of public mental-health care more focused on recovery.

They're lining up to help fix the system that's supposed to fix them.

When Dr. James Reinhard, commissioner of the Virginia Department of Mental Health, was in medical school in the 1980s, he was taught that someone with a disease like Beck's only got worse. There's still no accepted therapy or cure for severe mental illness. The very idea of a patient recovering or managing the illness to re-enter society has yet to make its way into mainstream medical school curriculum.

"We've focused on a medical model, and we use too many coercive interventions," Reinhard says.

That means relying on drugs and hospitals partly because it's easier to find funding for a medication that could be a cure-all or a hospital for worst-case patients than to get cash for a program that could "restore morale." It just doesn't carry the same force.

"We're still not there yet," Reinhard says. He's become a believer in the idea of recovery in the last five years and has worked to adopt recovery-oriented policies throughout the department.

Virginia law had allowed a judge to order Cho, the Virginia Tech shooter, to find treatment, but none was available and no one followed up. The system seemed to require someone to get "too bad" before they were committed, Reinhard says.

But hospitalization "traumatizes" people unnecessarily and at greater cost than the less-restrictive options the state says it supports, he says: "Perhaps we didn't do either as well as we could."

Central to the General Assembly debate that followed was how to make it easier to hospitalize people against their will.

Hospitalization is a constant concern for mental-health patients. But the worst-case scenario is forced hospitalization after a temporary detention order — getting "TDOed." Although it's necessary in some cases, recovery advocates worry that it happens more than it should and say the event itself is traumatizing. "The sense of humiliation and shame is astonishing," says David Mangano, a public mental health official in Chesterfield County.

One woman, speaking on the condition of anonymity, described her most recent TDO. She was having delusions and believed she had caused the MCV hospital to collapse to the ground. She rustled up a friend for an outing to see the hole in the ground.

When they arrived downtown, the building was still standing, but she figured everyone had been emptied out of the psych ward. On the way out of the parking deck, traffic was backed up, and she thought everyone was leaving at once. She leaned on the horn. Her friend told her to stop.

"Not taking advice is one of my early warning signs," she says. She continued to honk. That evening, she paced around the house "like a sentry," she says. Traffic passing the house seemed dangerous.

The next time she looked out the window, two police cars were out front. "At that point I thought they were there to protect me," she says. She ran out front and asked if that was the case.

"I don't know why we're here," the officers replied, shining flashlights in her eyes. Dressed only in a bathrobe, she turned and ran for the house, but they grabbed her first and cuffed her there in the front yard.

They sat her down inside, still cuffed, and asked if she would go to the hospital voluntarily. "I said, 'There are no more hospitals, there are no more hospitals, there are no more hospitals.'" They took her in the squad car to Bon Secours Richmond Community Hospital, cuffed her to a bed and drew blood. She was there for 12 days, spent time in seclusion and, when she was released, had bruises up and down her arms.

Her prescriptions had been switched around while she was in the hospital, and when she got out she stayed awake for days. Sensing things weren't going well, she checked back into the hospital. But at that point the only bed available was in Fredericksburg, too far for her parents to visit much.

Three hospitals and as many months later, she came home.

"I do not think my experiences in the hospital were healthy," she says. "The important thing people need to know is sometimes a TDO is a necessary last resort, but other things can be tried first, and the best possible scenario is for a person to feel like they can choose to go to a hospital to get better."

Schizophrenia and bipolar disorder are the two most common illnesses afflicting patients in the state's mental-health system. Schizophrenia used to be known as "dementia praecox," or premature dementia. It's characterized by hallucinations, disordered speech and paranoia. Bipolar disorder, formerly manic-depression, is attached to people who cycle through elated, delusional periods of euphoria followed by debilitating and potentially suicidal depressions.

Prior to Beck's diagnosis, she believed her husband was in league with the bad half of the county. She threw him out of the house, changed the locks and enrolled in couples therapy.

Other parts of her life hummed on. She was trying to launch a business staging themed birthday parties for children and had successfully secured a loan, enrolled in a class for entrepreneurs and bought $5,000 worth of castle, barnyard and country-western decorations. Her mind raced ahead of her, and she thought she could hear people's thoughts, but nobody seemed to notice.

Out on an errand one day, Beck passed a church marquee that she thought read "Remember, we're having a battle between good and evil. Be sure to pick a side." Later that evening, on the way to her couples therapy appointment, she passed the same sign and realized it wasn't large enough to hold such a lengthy message. It was a hallucination.

She described what's she'd seen to the therapist, who referred her to a psychiatrist. Fortunately, both were on her idea of Team Good or things may not have gone as smoothly. The psychiatrist prescribed her medication. Once it started taking hold, Beck told the doctor, "Either this medicine is working or those people got tired of following me around all the time."

But the drugs couldn't do much to bring Beck back to her old self. For two years she was in a soupy state while the doctor fine-tuned the prescription.

Today, clicking through photos on her computer in her cozy kitchen, she passes by themed birthday parties and family vacations in search of a picture from that time. There are only a few, but her face has the same distant, disconnected look in all of them.

Fortunately, Beck had studied early-childhood development in John Tyler Community College and could force herself to have one-on-one time with her children, then 2 and 4. But as far as she was concerned, it could have been a sack of potatoes on her lap. She still feels sad and guilty that she couldn't be the kind of mother she would have wanted to be.

As distressing as her diagnosis was, it was a relief to know what was going on, says Beck's mother, Ruby Fitzgerald.

For the first four or five months after the diagnosis, Fitzgerald would come over every day to put Beck and the children to bed. Meanwhile, Beck's husband worked two jobs until she got on disability.

"That's kind of unusual that the family stayed together through this," Beck says. She asked her psychiatrist about joining a support group, but he told her there weren't any for people like her. "I really didn't have connections with any of my peers," she says.

Finally she found them. Her mother joined the National Alliance for the Mentally Ill, or NAMI, a support group for patients and their families, and that eventually led to Beck finding a state-funded, nonprofit leadership academy that taught consumers how to network and advocate for mental health related issues.

"It really helped my recovery to see that people had gone on with their lives," she says. "It was like I had found a place where I could be comfortable and didn't have the baggage of hiding this secret anymore. … Instead of seeing my mental illness as a weakness, I saw it as a strength, like hey, I survived this."

Researchers aren't entirely certain what causes the diseases. Doctors use medications to trouble-shoot the symptoms, but can't directly engage the underlying illness. "If I just took my medication and did whatever, I'd relapse," Beck says. Supporters of the recovery movement say the mental-health system has a drug-dependency problem.

Clinical evidence for the effectiveness of a recovery-oriented approach came as early as the mid-'50s. A psychiatric hospital in Vermont tried a new program on some of its most intractable cases, teaching them job and social skills in conjunction with medication. After a few months, many of the patients were well enough to go home.

Courtenay Harding, a nationally known researcher at Boston University, tracked down those same patients 30 years later, and found that 62 to 68 percent of them had significantly improved or completely recovered outside of the hospital. She compares that with the effectiveness of drugs alone, which work to reduce side effects in about 60 percent of the population — but don't address managing one's life or mending personal relationships.

No one's quite sure why it's taken so long for the recovery movement to come into vogue, but what brought it into the policy mainstream came straight from the White House. Early in his first term, President George W. Bush launched his New Freedom Commission on Mental Health. The commission's chair called the final report "a roadmap" for transformation, proclaiming that the "destination is recovery."

Getting there is another question.

In 1968, Virginia set up community service boards, or CSBs. Their role was to coordinate public services for previously institutionalized patients with mental illness and substance-abuse problems.

They became even more important in the 1980s when, as part of an effort to shore up costs, President Ronald Reagan cut funds to many social-service programs — including psychiatric hospitals.

They now offer services ranging from counseling to drug management to running group homes. Advocates maintain that the system has never been adequately funded and that each program offers dramatically varied programs.

For Beck, the most important part of the job is helping to ensure the programs encourage recovery. She also teaches members how to write wellness recovery action plans, or WRAPs. The recovery tool, invented by a former patient, Mary Ellen Copeland, has been widely adopted in the public mental-health system.

The plan is divided into five sections: daily maintenance activities, circumstances that might trigger a bad reaction, early warning signs that something's amiss, what to do if it escalates to a crisis and what to do afterward.

Beck says her plan has helped her from sinking into trouble. She used to carry a checklist in her purse for her daily activities — taking her medicine, exercising, having 20 minutes of alone time each day, during which she occasionally strings beaded jewelry.

She watches out for certain triggers: not having enough time to herself, getting bad news or feeling pressured to finish her work. She knows she's in trouble if she stops sleeping through the night and feels energetic anyway, if her thoughts start to repeat themselves or if she feels flat.

It got to that point over the holidays, she says. It was two days before Christmas and Beck had spent "one of those busy days you have when you have kids," crammed with last-minute shopping, putting the finishing touches on gingerbread houses and attending the annual Christmas play at Swift Creek Mill Theatre.

She had finally tucked the children into bed when her husband pulled her aside and told her that his mother had called earlier that day. A family member had come down with a serious illness. Beck spent the next two weeks feeling kind of flat, she says. It didn't let up. She started pacing and crying uncontrollably. Her previous psychosis had started with depression and that got her thinking about her own illness and constantly worrying that her children might get it, too.

But she recognized those behaviors as triggers and knew it was time to see her doctor. Her mother went with her, a written requirement in her recovery plan. The doctor adjusted her prescription and she was back on track within a few days.

Her plan makes provisions for escalation, too. It says that if someone suspects she is having hallucinations, she should not be left alone with her children. She's specified whom to notify and with whom she has made arrangements to take over her responsibilities. The plan lists which hospital she'd prefer to go to and which she'd rather avoid.

The post-crisis part of a WRAP is highly detailed. It includes how to recognize signs that the person is doing better and whom the patient needs to apologize to. Beck says she's fortunate that she's never needed to invoke the crisis and post-crisis sections of the plan, but she hopes having one in the first place helps people keep from getting to that stage.

She worries that her disease will move beyond her in another way, though. Maybe, just maybe, one of her children will get it. Just in case, she's teaching them coping skills. If her daughter has a stressful day at school, they'll do "stiff noodle, cooked noodle," a relaxation exercise in which you tighten then relax your muscles before bed.

Such techniques may come in handy in the coming days. Beck also worries that going public about her illness will affect her relationships. She did lose a few friendships after revealing her diagnosis, and some of her extended family has only recently found out that the rough patch six years ago was more than just marital difficulties. Friends might stop calling or teachers might start looking at her children under a microscope. She might get that classic response, "Schizophrenia — that's what that mom who killed her kids had!" and have to explain that studies show people with serious mental illness are far more likely to be the victims of violence than the perpetrators.

Despite all that, she says telling her story is a necessary, if harrowing, step. "If I truly believe in recovery," she says, "then I should come out of the closet."

Beck works at RAFT House, a rehabilitation day center for mental-health patients run by Hanover County's community services board.

RAFT House is a clubhouse. There are "members," not "patients." They're responsible for running the place — they answer the phones, mop the floors and cook the meals. They take classes about managing their illness and go on outings together.

The first clubhouse, Fountain House, was started by a group of mental-health patients in New York City in 1948 who found that having a place of their own and having like-minded people around helped them get better. Now every community service board in Virginia has one, a prime example of how consumers themselves are reforming the system.

Beck would like to see more consumer-run programs. She envisions the kinds that are well-established in other states, but are a relatively new concept in Virginia.

Roanoke and Charlottesville have day centers in which the entire staff, including the executive directors, are former mental-health patients, but that's just a start. Recovery Innovations, a private, consumer-run peer-specialist training program in Phoenix, employs 350 people, 70 percent of whom are former patients, and has a partnership with the local community college that allows people to earn degrees in recovery services. It opened an office in Virginia Beach last year.

Chesterfield's community service board has more than a dozen former patients on staff. Mangano, an advocate there for consumers and their families, says those hires bring a unique skill set while creating a therapeutic situation for them.

You're putting people there "who have a personal experience that you cannot learn in school," he says. Apart from whatever regular duties they perform, they're proof to those enrolled that recovery works.

One peer specialist, speaking on the condition of anonymity, says she's had results with patients that other colleagues could not get.

"I believe, because I have seen this happen more than once, that a peer can talk to a peer in a genuine, respectful, caring way when they can see the benefit of making the choice to go to the hospital," she says.

The peer specialist herself had been hospitalized. And recently, a patient she worked with fell into crisis. She was able to look him in the eye, sketch out what she'd been through and ultimately convince him to check in.

In many ways, it's the ideal recovery scenario — a patient with a diagnosis employed by the state mental-health system helping to divert a forced hospitalization — but it's still a radical idea.

Jim Martinez, director of mental health services for the Virginia Department of Mental Health, Mental Retardation and Substance Abuse Services, says the state's trying to adopt recovery-based principles, but it's taking a serious change of philosophy.

"The history of mental treatment has been characterized by getting people into treatment when they're at their worst" Martinez says. Not only was recovery not an option, he says, but "steeper declines and deeper troughs of disability" were the expectation.

The tragedy last April 16 at Tech further tested the state's newly forged commitment to recovery. Virginia's new law, passed last month, makes it easier to force people into treatment — either in a psychiatric hospital or at home. The same law, however, contains language that advocates consider groundbreaking for its patient-friendly approach.

"On the one hand you had the therapeutic approach concerned with making sick people better," says Delegate Robert Bell, R-Charlottesville, one of the more hands-on legislators in the matter, "and on the other was the public-safety concern."

The fundamental issue of democratic governance: When do you take away someone's right to manage their own health care for their own good or for public safety?

How about never, suggests Byron Stith, an active local recovery advocate. That's one extreme in the discussion and unlikely to become a policy reality. But as something to move toward philosophically, it scored some wins in the new law.

Stith serves on the Supreme Court of Virginia's Commission on Mental Health Law Reform, a panel that began to overhaul the state mental-health system before the Tech shootings and whose recommendations bore heavily on the shape of the law. He testified along with other consumers in front of many legislative panels during the session. The panel's fingerprints also are on the new law.

Stith has climbed the public ladder of mental-health recovery and is familiar with its missing rungs. He was a law student at the University of Miami when he became sick. After eight months on the street sleeping in crack houses, urinating in public and committing any number of low-level infractions that could have sent him down the rabbit hole of the criminal justice system, his mother finally found him and brought him back to Richmond.

She took him to VCU Medical Center's psychiatric unit, where the doctor wanted to commit him. She asked what they'd do for him. Make sure he takes his meds and doesn't kill himself, they said. "Hell, I can do that," his mother said, and took him home.

Stith started out spending days at a clubhouse, trained and got a job as a peer specialist and now works at a nonprofit that helps chronically homeless people with mental illnesses to find housing.

The new legislation has lowered the threshold for the state to force people into treatment, moving it from the point that they pose "imminent danger" to themselves or others to the point that they indicate a "substantial likelihood" of doing so.

If a person is involuntarily committed to a hospital, however, doctors must take into consideration any written document that the patient has drafted in advance — for instance, the crisis portion of their personal recovery plan.

Stith sees good first steps, but wants it to go further.

"In Virginia, individuals can have a general health-care directive," he says, referring to documents such as living wills. "There are psychiatric-advanced directives, but they're not enforced."

Crucially, though, the law specifies that if a court orders someone to seek treatment, a treatment plan must be developed "with the fullest possible involvement and participation of the person and reflect his preferences to the greatest extent possible to support his recovery and self-determination."

The new commitment standard violates civil rights, Chesterfield's Mangano says, and the recovery talk is nice, but the proof will be in the execution.

"The department keeps saying that they support recovery and consumer-run services," he says. "I will tell you I think they've supported it from a policy point of view. When they start funding consumer-run services, when they start making it easier to employ consumers as providers in the CSB system — then we'll know they really believe in recovery."

The story's far from over. It's not clear how far this year's infusion of money from the state will go or how judges will interpret the new law. The questions sit at the philosophical crossroads of public safety and civil rights; liberty balanced against security. Medically, the soft idea of human interaction as therapeutic runs up against the hard science of advancements in chemistry.

Against the wave of concern set off by the Virginia Tech shootings, though, the recovery movement has secured a place in the same law that allows the state to reach further into people's lives. The word schizophrenia comes from the Greek roots schizein for split and phren for mind. For now, Virginia is of a split mind; it displays, at its roots, symptoms of schizophrenia. S

Corrections: In a previous version of this article, we misspelled the name of Jim Reinhard, Commissioner of the Department for Mental Health, Mental Retardation and Substance Abuse Services. We also misidentified the year that Virginia established Community Service Boards. The correct year is 1968.

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