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[ Originally published
on: Friday, August 20, 2004 ]
Oryx Cohen has been hurtled many times to the
depths of depression but, undaunted, has always climbed
back out again.
Cohen, 30, who works for a Holyoke agency as an
advocate for people with disabilities, is a
contemplative man, tall and slender, with a tentative
yet beguiling smile.
He is astute, educated, well-spoken and attentive '
and he has been diagnosed with bipolar disorder. He has
had stretches of deep depression, periods of paranoia
and days when he was convinced he could control the
thoughts of his peers.
He
nearly killed himself once by driving into the back of a
truck, thinking he could teleport his car through the
vehicle.
Yet Cohen refuses to take psychiatric medications his
doctors have prescribed, saying they leave him dazed and
unable to function.
''I'm a stubborn person,'' said Cohen, who also
rejects the claim of many in the medical profession that
mental illness is caused by a chemical imbalance in the
brain.
Instead Cohen, who lives in Worcester, has adopted a
regimen of eating healthy foods and exercising regularly
that he says helps control his symptoms. And he has
joined with like-minded people in forming the Freedom
Center in Northampton to provide alternatives for others
diagnosed with mental illness.
Through talk therapy and support groups and
relaxation techniques such as yoga, Reiki and writing,
the Freedom Center helps members keep their mental
balance, says Cohen.
Cohen, along with Will Hall of Northampton, who was
diagnosed over a decade ago with schizophrenia, founded
the Freedom Center in 2001, part of a nationwide effort
to challenge the theory that mental illness is caused by
hereditary or biological traits. Furthermore, they say
they are opposed to the use of psychotropic medications
as the primary treatment for mental illness.
Even before his own diagnosis with bipolar disorder,
which is often called manic depression, and his
subsequent encounters with the mental health
establishment, Cohen was skeptical of its claims, he
said.
''Psychiatric training in medical schools is
brainwashing,'' said Cohen, who as a psychology major in
college studied the traditional theories about the
causes of mental illnesses. ''I didn't buy it at
all.''
The Freedom Center, which runs its programs in
various locations in downtown Northampton, is a
non-profit organization funded primarily through private
donations. Last year students at the Smith College
School for Social Work donated $1,500 to the center, the
first time in over two decades the annual class gift was
not given to Smith. The organization also received a
one-year $10,000 grant in 2003 from the state Department
of Mental Health and smaller sums from state and federal
sources. It is run by volunteers who, like Cohen and
Hall, have themselves been labeled mentally ill. Most of
them have tried medication ' by choice, coercion or
force ' and have decided to pursue a medication-free
life.
VIKKI GILBERT OF AMHERST is one of them. Gilbert has
been hospitalized in psychiatric wards five times, and
over the years has taken 19 psychotropic medications '
often up to six at a time.
The combination, she says, left her a mess.
Over the years doctors diagnosed a number of
conditions: major depression, personality disorder,
bipolar disorder and, most recently, schizoaffective
disorder.
She said she took the medications prescribed '
antipsychotics, mood stabilizers, antidepressants,
tranquilizers ' because her doctors convinced her she
would never get well without them.
''I believed the crap I was told,'' Gilbert said.
In the process, Gilbert, who is a poet, said she lost
her ability to write poetry.
''The side effects from the medication were so
terrible that it was sometimes impossible to function,''
said Gilbert. ''I was energetic and intense but the
medications almost made me lose my personality.''
Finally, unwilling to accept the changes in her
personality, she decided to wean herself from the drugs,
a process which she says must be done slowly and
carefully to allow the body to adjust.
Now, 38, and medication-free for nearly two years,
Gilbert has joined forces with the Freedom Center. ''I
perform and write poetry, talk with people who I find
supportive, use peer support and practice yoga,
meditation and Reiki,'' often under the supportive eye
of other Freedom Center members, Gilbert said. She also
utilizes the Wellness Recovery Action Plan, a self-help
guide recommended by the center and devised by mental
health recovery educator and author, Mary Ellen
Copeland, of West Dummerston, Vt. The plan, among other
things, requires Gilbert to keep a journal identifying
circumstances that may produce symptoms as well as early
warning signs of trouble. It also provides suggestions
for steps to take when she feels she may be losing
control, such as listening to music, talking to a friend
or health care professional, exercising or using guided
imagery, that is, conjuring up soothing sights, sounds,
tastes or smells in her mind.
''People need caring, listening people ' not to be
treated as objects,'' said Freedom Center co-founder
Hall, who says his group has been successful in helping
people avoid hospitalization.
THE FREEDOM CENTER models itself on work done by Dr.
Loren Mosher, former chief of the Center for Studies of
Schizophrenia at the National Institutes of Mental
Health in Bethesda, Md., who was a pioneer in
establishing programs for psychosocial community
care.
Mosher, who died July 10 of cancer, spoke recently at
Mount Holyoke College in South Hadley, about Soteria
House, a residential program he founded in the 1970s in
San Jose, Calif.
The program followed what Mosher called a humanistic
approach to treatment of people with mental illness in
offering an alternative to hospitalization. Soteria
House provided a homelike setting and trained but
non-professional staff, with a focus on interpersonal
therapy. Little or no medication was used.
In a study done between 1971 and 1983, and published
in 2003 in the Journal of Nervous and Mental Disease,
Mosher compared results of Soteria House's treatment
methods for newly diagnosed schizophrenics with the
results for similar patients in traditional hospital
settings. Participants were evaluated in areas such as
social functioning, improvement in their mental states,
the ability to work, live alone or with peers, and the
rate of readmission to mental health programs.
Data showed Soteria House was as effective as
hospitals in quickly ''reducing levels of acute positive
symptoms of mental illness'' in 85 percent to 90 percent
of the people surveyed, according to Mosher's
report.
And while he maintained that his program was at least
as effective as hospitalization, and more economical, he
told his audience that it was eventually shut down
largely due to lack of funding and opposition from
pharmaceutical companies opposed to his
non-pharmaceutical treatment approach.
Mosher, a Harvard-trained psychiatrist, said he had
been against the automatic use of antipsychotic
medication in treating mental illnesses such as
schizophrenia since the beginning of his career. He told
his Mount Holyoke College audience, ''Our program was
recovery-oriented ... We used the principals of choice,
informed consent and volunteerism to achieve our goals.
We demystified the experience of psychosis,'' he
said.
THE SCIENTIFIC and medical worlds have struggled for
centuries to pinpoint the causes of mental illness and
the ways to treat the afflicted.
In his book ''Mad in America,'' Cambridge journalist
Robert Whitaker outlines medicine's ever-changing
treatment methods ' from warehousing the ''insane,''
performing lobotomies and using hydrotherapy and shock
treatments, to the current use of
psychopharmacology.
At each juncture, Whitaker says, the medical
community has poorly gauged the causes of, and therefore
the appropriate treatments for, mental illnesses.
At the heart of the modern-day disagreement is the
now widely accepted theory that mental illnesses are
caused largely by brain malfunctions which produce
chemical imbalances, Whitaker said in a recent
interview.
Researchers at the American Psychiatric Association
say there is evidence that the brain chemistry of the
mentally ill is different from that of other people and
that medication is required to correct it.
''Just like a diabetic patient who needs insulin or a
heart patient nitroglycerin, a patient suffering from a
severe mental illness may need a specific type of
psychiatric medication,'' the APA Web site says.
But Whitaker, a former health reporter for The Boston
Globe who was nominated for a Pulitzer Prize for his
work there, said the most convincing theories he found
while researching his book, suggest those illnesses are
caused by life trauma, combined with factors such as
inadequate diet, poor exercise and ongoing stress.
He is not alone in that belief.
For example, the U.S. Surgeon General's 1999 report
on mental illness states, ''Few lesions or physiologic
abnormalities define the mental disorders, and for the
most part their causes remain unknown.''
Researchers in England recently reported that an
increase in diagnosed mental illness in that country may
well be the result of changes in farming and food
consumption over the past 20 years, resulting in a
deficiency in the British diet of essential omega-3
fatty acids. A study earlier this year by the Royal
College of Psychiatrists revealed a link between a lack
of omega-3 fatty acids in the diet and schizophrenia,
worldwide. It concluded that people who eat high levels
of sugar and dairy products, and not enough oily fish,
are more likely to develop severe mental illness.
But, Whitaker said, such studies have been largely
ignored by the medical establishment, and as a result,
he says, treatment rates for the mentally ill haven't
improved in 100 years.
Dr. Edward Ballis, psychiatric medical director at
Noble Hospital in Westfield who uses both drugs and
psychotherapy in his treatment plans, said he generally
accepts the current medical thinking that biology is at
the root of mental illness.
''There is most likely a constitutional
predisposition'' to mental illness, which, under the
right environmental circumstances, will surface, he
said. For some, he added, the trait will be so prominent
that it will show up regardless of life experiences,
while, for others, problems may surface only in the
event of significant influences, such as sexual
abuse.
Ballis, however, cautions that drugs are not always
the only, or the best, treatment. He said that although
psychiatrists strive for a balance when prescribing
medications, often adjusting types and doses repeatedly,
medications are relied upon too heavily in treating
mental illness. As a result, he said, doctors often
ignore other options.
In fact, for some patients, he said, certain
medications are ineffective, while for others the side
effects, may be unbearable.
In spite of that, Freedom Center members point out,
the number of patients receiving psychiatric medications
continues to climb, especially since the introduction in
1986 by Lilly Pharmaceutical Co. of the antidepressant
Prozac.
That medication alone has been prescribed for some 40
million patients worldwide, according to the
manufacturer's Web site, despite the fact that in 2003,
the U.S. Food and Drug issued a public health advisory
reporting a link between suicide and the use of some
antidepressants, including Prozac.
AMONG THOSE WHO'VE tried Prozac is Freedom Center
co-founder Will Hall. Over a decade ago, he said, his
doctors told him to take it to relieve his
depression.
''At first it was like the best cup of coffee I had
ever had,'' he recently told an audience at a seminar at
Smith College. ''I was being very productive at work,
getting up early, and really feeling better than
well.''
But then, he said, he had a manic reaction which he
attributed to the pills.
''I was suddenly acting very differently at work,
wearing weird clothes and getting into big arguments
with my co-workers.''
He said he was ''terrified'' by the experience.
''No doctor warned me, and nobody got me off the
Prozac when the manic reaction started,'' Hall told his
audience. ''I ended up losing a long-term job as a
result of this drug side effect.''
Two years later he ended up in a locked psychiatric
ward in a San Francisco hospital, where he was diagnosed
with schizophrenia. He was put in restraints and
isolation and forced to take Navane, a far more powerful
drug.
''I lost who I was,'' said Hall. ''It changed my
personality to be on medications ... It's a form of
torture.''
Today, Hall, who stopped taking medication 11 years
ago and has not been hospitalized since, uses holistic
healing methods to maintain his mental well-being.
Oryx Cohen said people like Hall and himself are
often duped into thinking those medications are their
only hope for effective treatment ' a notion he says is
supported by an establishment of physicians, mental
health workers, law enforcement officials and the
courts.
Cohen grew up in Eugene, Ore., where he had a happy
childhood and successful college years, he said. But his
first job, working with inner-city children in a black
neighborhood in Portland, left him confused and
depressed. ''It was culture shock ... I couldn't process
it,'' he said. He quit that job and took what he thought
would be a less stressful position in a golf course
restaurant, busing tables and bartending. That decision,
however, left him feeling overqualified for his work and
frustrated.
''I had been depressed before ' I think everybody
gets depressed ' but this was different,'' Cohen said.
''This was major.''
Cohen said he felt constantly tired. ''I had no
energy to do anything, I was getting no enjoyment out of
things I used to enjoy. I started to have paranoid
thoughts ' to think that people were talking about me,
and maybe they were,'' he said.
Having a basic distrust of the medical profession, he
said, he was reluctant to visit a doctor. And so he
began to research his symptoms on the Internet.
What he found, he said, further disturbed and
disheartened him.
He discovered no shortage of information, but very
little that challenged current accepted medical
theories.
''Everywhere I turned on the Internet said depression
was a biological disorder ' that you need to take drugs
to treat this and that it will never go away ' that
you'll have it for your life. I wasn't comfortable with
that ... I didn't want to be sick, and I didn't want to
have a condition.''
Cohen said he viewed the cause of his own depression
as situational, and decided it wasn't medication he
needed, but a change of environment.
He enrolled in the master's degree program in public
administration at the University of Massachusetts at
Amherst and decided he would fight to get better on his
own terms. He forced himself into a routine of eating
healthy food and doing lots of exercise.
''When you're in a situation like that it's not easy,
dealing with the inertia. You're in a black hole and
it's hard to get out of it,'' Cohen said of his
debilitating depression.
''Initially it takes more energy to figure out what
keeps you well ' there's a learning curve.''
Soon after his arrival at UMass, Cohen said, he began
to have feelings of paranoia again.
Distressed by a disagreement at school in which he
felt vulnerable and outnumbered, he said, he entered
another manic phase. He began to go for days without
eating and sleeping, stopped going to classes, and spent
hours each day dreaming up ways to ''free the minds'' of
his rivals.
''I felt like I was going through some real big
enlightenment. I felt better than I had in my whole
life,'' Cohen said. ''You get infatuated with that
feeling ' it's the seduction of madness.''
Cohen said his friends became increasingly concerned
about him and encouraged him to seek medical help, which
he did not do. Their concerns, it turned out, were
well-founded.
Soon after, Cohen drove into the back end of a truck,
thinking he could ''teleport'' his car through the other
vehicle. He nearly killed himself. ''Fortunately, no one
else was hurt,'' Cohen said.
When he had recovered enough from his injuries, the
hospital which was treating him transferred him to its
psychiatric ward, where he was diagnosed with bipolar
disorder.
''They put me on medication, even though I was
terrified of what [the drugs] would do,'' said Cohen.
But, he said, his family encouraged him to take the
medications. ''If I didn't, I knew I would be forced
to.''
After he was discharged he continued to take the
pills (up to 2,000 mg daily of Depakote) but the side
effects were intolerable, he said. He became severely
tired, sleeping up to 16 hours a day, and gained 40
pounds in two months. He vomited frequently and his
hands shook uncontrollably.
Upon his return to UMass, Cohen saw several
psychiatrists before settling on one who helped him
reduce his medication.
''The minute I walked into his door, [the doctor]
could tell I was overmedicated, dazed, shaky,
exhausted,'' Cohen said. ''He immediately lowered my
dosage of both Risperdal and Depakote. Then he worked
with me to taper off the meds slowly.''
But even this doctor didn't recommend that Cohen go
completely off the medications ' so, he said, ''I went
off them on my own.''
''I found what works for me ' true alternatives that
keep me healthy,'' Cohen said. ''I don't think they are
much different than anybody else ' so-called normal
people'': getting enough sleep and exercise, having a
loving relationship and supportive family and friends,
keeping a diet low in sugar and caffeine, having
meaningful work to do during the day, enjoying the
outdoors and literature.
With this lifestyle, Cohen said, he was able to
complete his master's degree. He now works as a career
initiatives coordinator at the Western Massachusetts
Training Consortium in Holyoke, advocating for others
with mental illness. He also recently got married.
''I'm a lot more in touch with myself now,'' Cohen
said. ''If I feel myself getting stressed out over work
or a family issue, I know to step away from the
situation until I am in a better frame of mind.'' He
said since he began his new regimen, there have been no
relapses of his bipolar symptoms.
While Cohen apparently has been successful in
avoiding medication, psychologist Michael Sherry said it
is difficult to do what he has done. ''It takes a lot of
self-awareness... a strength of character. That would
take a fair amount of ego strength,'' said Sherry, who
works at the Behavioral Health Network in Springfield, a
community mental health agency that provides services
for psychiatric-related problems.
But with support, Cohen believes, others can have
similar success. Buoyed by an increasing body of
research supporting that claim, and a nationwide network
of like-minded people, Cohen says that is what he and
Hall hope Freedom Center provides with its various
support and relaxation groups, and resources such as an
informational Web site and online chat room.
THE CENTER IS ALSO working to influence the policies
of agencies in the area that work with the mentally ill.
Since the center was formed, members have cajoled,
prodded, coerced and even infuriated leaders of the
local mental health establishment with their insistence
that the agencies allow more treatment alternatives for
their clients.
In the process, they say, they have butted heads more
than once with officials at ServiceNet, a social service
agency in Hampshire and Franklin counties and in the
North Quabbin area that provides mental health
services.
Freedom Center advocates have charged that ServiceNet
forcibly medicates some clients. Specifically at issue
in the Freedom Center claim are ServiceNet patients who
are under a court order, known as a Rogers order, to
take antipsychotic medication.
In a recent interview, Susan L. Stubbs, the CEO of
ServiceNet, said clients who refuse to take psychiatric
medication are not forced to do so. She said the Rogers
order has no real ''teeth'' once a patient is discharged
from a hospital setting, and that the order is not
enforced by ServiceNet.
Stubbs said that while she agrees that medication is
not always the answer for every mentally ill client,
there are times when it is ''absolutely
appropriate.''
''The goal is to be drug-free, whether it's
cigarettes, psychotropic drugs or even aspirin,'' Stubbs
said. ''But there are some for whom medications have
given them a life ... yes, they have some side effects,
but so do cancer medications. That doesn't mean you
shouldn't take them if they'll save your life.''
''This is not a black and white issue, a right or
wrong issue,'' Stubbs said. ''It's a tough issue.''
NOT ALL SERVICENET clients take medications for their
illnesses. Two who do, however, spoke to the Gazette
recently, in a meeting arranged and attended by Stubbs
and other ServiceNet workers.
One of them, Marilyn Abbott, said the drug Clozaril
has helped her control the confusion and delusions
caused by her schizophrenia. Before she began taking the
drug 14 years ago, she said, she had a compulsion to
kill, an urge she believes she would have followed if
not for the care and services she has received from
ServiceNet ' and the antipsychotic medications.
''I committed arson ... I poisoned animals,'' said
Abbott, 54, who lives in Amherst House, a residential
treatment program run by ServiceNet.
Abbott said she even had a plan to poison people: ''I
was going to take [tainted] cookies to church and put
the cookies on the table with other people's
desserts.''
Her road to mental illness, she said, was fraught
with trauma ' including sexual abuse.
In college, she says, she was an outwardly successful
student who played tennis, ran track and played piano
and organ. But, she said, she was dogged by murderous
thoughts. By 1990, those thoughts and her behavior had
become more alarming, she said, and she was hospitalized
at Cooley Dickinson Hospital in Northampton. There she
was diagnosed as schizophrenic, a condition often marked
by delusional thinking accompanied by voices and visions
that do not exist. Committed to the former Northampton
State Hospital, she remained there until 1992, when she
moved into the ServiceNet house in Amherst.
Abbott said the Clozaril she takes to reduce her
symptoms makes her drool at night, but she said the
benefits ' clearer thinking and less confusion '
outweigh the costs. She said her life is placid now.
Though she no longer plays the piano, she said she
enjoys occasional trips to Tanglewood with ServiceNet
staff.
''I have turned around 180 degrees,'' Abbott said.
''They have eliminated my frustration level. They helped
with many things that were mountains to me, and reduced
them to molehills.''
Likewise, ServiceNet client Becky Cehura said she
wanted nothing more than to quiet the voices in her head
' and she credits her medications with helping her to do
that.
Cehura said she was 18 years old and living in a
boardinghouse in Easthampton when she was first
diagnosed as psychotic.
''I was delusional,'' said Cehura, now 30. ''When I
was upset, I would have a little conversation with the
voices in my head that I thought were real.''
As her neighbors became increasingly concerned,
reporting her to the police, Cehura was developing
full-blown schizophrenia. Her troubles culminated one
day in downtown Easthampton, she said, when she thought
she was an undercover police officer, disguised as a
prostitute.
''I took my clothes off in an Easthampton park,''
said Cehura. She ended up in the psychiatric ward of a
hospital, where she was diagnosed as schizophrenic.
After spending time in ''lots of psych wards,''
Cehura said, she finally connected with ServiceNet
programs, where doctors prescribed Clozaril.
''It cleared my head,'' Cehura said. ''I stopped
having delusions. I stopped talking to the voices in my
head.'' Cehura has also been diagnosed with
obsessive-compulsive disorder, for which she takes
Zoloft.
With ServiceNet's help, said Cehura, she has
gradually gotten back on her feet.
''ServiceNet got me on the proper medication,''
Cehura said. ''From then I took baby steps to grow.'' It
took awhile to find the right combination of
medications, she said. ''Meds are trial and error ...
Some think you can stop your meds and do daily things.
That's not realistic,'' Cehura said. ''I can't go off my
meds. I will go backward and I don't want to go
backward.''
While Cehura said the Clozaril she takes sedates her,
she is willing to tolerate the side effect. ''I live a
normal life because of my meds,'' she said. ''It takes a
lot of personal strength. I still have a long way to go
... [but] I'm not doing weird things anymore.''
WHILE CEHURA PREFERS her life as it is, David Burns,
57, who, like other Freedom Center members, calls
himself ''a psychiatric survivor,'' said some of ''those
weird things'' people do tend to frighten the public.
But, he maintains, in most cases that fear is
unfounded.
''What many call ￪biochemically defective' is
really an ordinary human experience,'' said Burns. When
that is coupled with times of crisis or extreme stress,
behaviors may become unusual, he said. But unless the
behavior that results becomes threatening, he believes,
it should be considered a normal part of living.
Taking a page from the work of R.D. Laing, a Scottish
therapist and author of the book ''The Divided Self,''
who challenged the accepted definition of schizophrenia,
Burns said people should be ''free to explore'' those
extreme states.
But, Burns said, ''The community responds to that
idea with fear.'' It is society's inability to
understand and support those extreme states that further
aggravates the problem.
While Freedom Center advocates acknowledge there are
times when the behavior of the mentally ill can be
violent or threatening, they stress that violence is
found in all populations. The public's expectation that
the mentally ill will automatically be violent ' or that
hospitalization and medication is the only solution if
they are ' is unfounded, said Burns.
Northampton psychologist Michael Sherry said that in
this culture, a great premium is placed on
conformity.
In the United States, treatment of those afflicted
with mental illness, particularly schizophrenia, tends
to be aggressive, Sherry said, largely because there is
no place for anyone whose behavior significantly differs
from the mainstream. He said schizophrenia, which
initially strikes primarily in the teenage or early
adult years, knocks the afflicted out of the social and
economic running.
''Once you fall from your social niche ' the economic
marketplace ' there is very little place left in our
society to become something,'' he said. ''You can't be
different.''
But even with the use of the antipsychotic
medications, those with schizophrenia ''rarely return to
their niche in this culture,'' said Sherry.
A study done recently at Mount Sinai School of
Medicine in New York City showed that fewer than 10
percent of schizophrenia patients ever get a regular job
or live independently.
While the mainstream medical community continues to
view medication as an integral part of effective
treatment of psychiatric diseases, Freedom Center
advocates say they hope to open a residential program in
Hampshire County, based on Loren Mosher's Soteria
House.
Before his death, Mosher was a mentor to those at
Freedom Center, encouraging them to continue his
work.
''Those labeled mentally ill are made into surplus
people then thrown in the wastebasket,'' Mosher said.
''That's not the way a civilized society ought to
behave.''
Freedom Center co-founder Hall said, although many
who participate in the center's programs continue to
take psychotropic medications, a Soteria-style home here
would provide a place for people to try other ways to
handle mental health problems.
In the meantime, he said, he and others at Freedom
Center, will continue to speak out about the need for
alternative treatments for mental illness.
''Our motto is ￪Nothing about us, without us,' ''
said Hall. ''We are going to get our voices heard.''
Kathleen Mellen can be reached at
kmellen@gazettenet.com.
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