Mending the Mind

This article was featured on the cover of the Richmond, VA magazine Style Weekly during the week of April 1st, 2008.

Can people with severe mental illness learn to live with their
disease?
by Amy Biegelsen

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-
effective 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 Reinhardt, 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," Reinhardt 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," Reinhardt 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, Reinhardt 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 the 1980s, as part of an effort to shore up costs, President
Ronald Reagan cut funds to many social-service programs ­ including
psychiatric hospitals. In response, 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 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