Thursday, December 20, 2012
Thursday, December 13, 2012
Friday, December 7, 2012
Adapting Ancient Techniques to Help Cope With Mental Illness
By Jenna Ritter, Founder and Senior Teacher at DHARA
Yoga for Mental Wellness
We are fortunate that Yoga has become mainstream.
Contrary to popular belief, Yoga is actually about healing more than it is
about exercise. Yoga is one of many alternative modalities that offer a very
real and cost effective solution to current health care needs. Yoga inspires a
ripple effect of health that starts within each of us. The sign of a healthy
Yoga practice is when the practitioner experiences a sense of flow and harmony.
When there is flow and harmony inwardly the conditions necessary to cultivate a
healthier, more positive relationship with the self and others are created and
supported outwardly, and vice versa. With practice over time the Yoga student’s
life gets better, then their interactions with other people get better, and, as
result, society gets better. At its central core, then, Yoga is a cultivated
lifestyle rooted in relationship.
In itself mental illness can be very isolating. On top of
this, the restraints of stigma can keep individuals hidden creating a container
of fear, anxiety, depression and anger to stew. Learning how to apply effective
and practical techniques to break out of isolation and move into various
degrees of relationship is highly desirable. Today there is an abundance of
information available on alternative treatments. When one becomes interested in
exploring something like Yoga it is easy to become overwhelmed and confused. For
special needs populations navigating this terrain can be even more challenging.
In efforts to clarify and keep things simple I have developed my work through
my nonprofit project DHARA. DHARA accesses
and teaches foundational elements essential to a healthy and safe Yoga healing
practice. Classes nurture sustainable empowerment within a safe environment for
those living in highly stressful, chaotic, and uncomfortable life situations.
I have been studying Yoga for 12 years, teaching for 8
years. As part of my personal healing and training I lived in India and China
studying with master teachers. Before Yoga, I was an early childhood special
education teacher very interested in inclusion models of education that
highlighted resiliency and empowerment. Reflecting on my journey and
integrating my knowledge, I have come to understand Yoga to be about accessing
and working with prana or qi, the vital life force energy which is
in each one of us. It is my personal experience that the body has an innate
wisdom to heal itself when we learn to work with it. Yoga enables serious
students to come out of their shell, to realize the gift that they are, and to
offer that to the world effortlessly.
Knowing that some Yoga can be unsafe and actually
harmful, I utilize my special education background and unique training
experiences to develop curricula that provides clear foundational
practices—something like the “ABC’s” of Yoga healing—to support people in their
recovery and reintegration. The breath is central to a good Yoga practice: the
breath provides an indicator as to our mood at any given time, as well as is an
effective vehicle to begin the shift into a more desired state of mind. In my
classes I teach practical and effective ways to build inner strength through
using easy to apply tools of breath and gentle movement. With practice over
time a greater harmony and joy in life is experienced. As students begin to
fall into a rhythm with their practice I see them begin to return to the rhythm
of their lives. Students begin to more easily show up for themselves and each
other in a way that wasn’t possible before attending classes. Students emerge
more centered, grounded and whole. There is a new enthusiasm—a joy—that simply
is. I suspect with continued practice the ripples of these effects will impact
the larger communities around us all.
Note: Jenna Ritter,
Founder & Senior Teacher at DHARA, teaches low-income adults living with
various emotional and mental health issues self-healing through ancient Indian
and Chinese lifestyle systems adapted to modern-day living situations. Programs
and trainings are also available for service providers www.dharanyc.org. Contact jenna@dharanyc.org for more information on
classes and special workshop offerings.
Ward Stories - Winter 2013
A
column organized by Dan Frey, Interim Poetry Editor
This edition of Ward Stories features poetry from a couple
of sources. We feature Claudia Krizay, who sent us a number of poems and images
of her art via email. We include her potent poem on the experience of the ECT
(electro-convulsive therapy) patient with an image of her art titled “Scared.”
We also include an untitled piece by Stefanie Tomasello, an adventure in visual
art that will make you want to take up the craft yourself. You can read Stefanie’s
personal story in this edition.
ECT
By Claudia Krizay
In this moment I feel as if I am falling,
Into a prison from nowhere,
I see my shadow arabesque as
I watch my reflection appear
In a river of never abating madness
Hiding from all that is real,
Moments have passed since I lay upon
A cold metal table,
Drifting off to sleep, and
Upon awakening
I remember nothing, except for
The sensation of falling
From nowhere into nothingness
As I watch the sun rising,
Outside of a picture window,
I find myself alive in some different place in time.
I feel my heart pounding
As if it were trying to escape
From a prison of iron bars inside of my chest, as
My brain spins about
As if it were riding a horse on a merry-go-round,
It’s motor somehow
Rapidly accelerating
As that horse bobs up and down
Exacerbating my fear
I hear myself screaming
In the midst of deadly silence
The sun has now risen high over the mountains outside.
Within my utmost fantasies,
I am climbing my own mountain,
Hoping to reach the sky although
I cannot escape that merry-go-round of terror
Except that I know now
I cannot hide from all that is real,
I shall never touch the sky and as
I find myself falling off of this make believe mountain
I can see my shadow more clearly and
As I fall into a river of my fantasies,
I swim to the bank of this river from nowhere,
Leaving the madness behind
Untitled
By Stefanie
Tomasello
She
layered her soul, ultimately not knowing who she was
She
clings to strength, ultimately surprised by her words and cause.
She
looked with her eyes,
Kindly
imaginative and vital for her confidence,
She’s
always questioning her riveting life dance.
She
charcoaled her way back to her soul, in a place as sour as a persevered, odd
trance.
She
continued to electrically get everything off her chest and stood for something
more than what she knew. Colored her way through life with a colored pencil or
two;
Sharpened
shavings piled up, She digs deep to have the charcoaled black scent imbedded on
her hands. Hoping the left-over color will seep through the pages of her mind
on pads. She thickens the movement of her pencil through the gliding of her
positioned fingertips; reserved only for the tearful, colorful misfits sips,
always teaching herself never to ignore the extraordinary use of playful
sharpened tips, almost like a whip of courage from the inner strength of her
plentiful spirits kept down below in her soul slowly embracing life as a
departure for a new world as a new cherished and vagrant whole.
Wrestling with Myself, Alcohol and Mental Illness
By Tom Palmer
My parents were
always there to support me
There have been a
few strong influences on my life: alcohol, mental illness, and the sport of
wrestling. For a while, the sport of wrestling was good to me. Several times I
got to pin a guy in front of the whole school. Many of my matches were
executions. However, when I was fifteen I started feeling an intense,
paralyzing fear in all social situations. It was agoraphobia with a vengeance.
My sophomore year in high school was my last winning season.
I started to crave
alcohol because it stilled the intense fear I felt around people. Alcohol
allowed me to have fun at parties. It made me feel good. Before I got put on
anti-psychotic medication, drinking a few beers had an almost narcotic effect
on me. Alcohol is still a problem for me many decades later.
When I was eighteen,
I shocked and dismayed my family by joining the army. I was a national Merit Scholarship
finalist, and thus my family had a different vision for my future. Most of my
friends were surprised when I joined the army, too.
Lately, I have
realized how fear-based most of my life has been. When I was young, I had the
same fear of monsters and the dark that most children have. I never really
outgrew it. Even during my best years, I was very scared at night. I was afraid
the devil was outside my window ready to come in and possess me. The movie
"The Exorcist" had a strong negative effect on me.
I can’t tell an
exact time to pinpoint as the beginning of my mental illness. The intense
agoraphobia that started when I was fifteen was pretty pathological. Then, when
I was at the University
of Oklahoma Dallas ,
Texas
I've never been an
autonomous, functioning adult. I've always been overwhelmed by the ordinary
demands of life. I got out of the army with an honorable discharge, but just
barely. After serving four years in the army, I got out with the rank of private
E-1. I got a Bachelor’s degree at the University of Oklahoma
All told, I would
guess that I have been hospitalized for mental illness about twenty-five times.
For the past ten years, I have lived in an assisted living center for the
mentally ill. I have been living about as comfortably as I can with my mental
illness. I don’t know what would happen if I didn't have the support I have. I
guess I might be living on the streets and eating out of garbage cans.
I can remember
sitting in my pathological psychology class at University of Oklahoma
However, I am
grateful for the support I have. Of course, some things could be better, but
that has always been the case, no matter what.
Happiness At Last
By
Stefanie Tomasello
Finding
a doctor who listens and the right combination of medicines makes all the difference
I’m
bi-polar and stumped; I'm stumped today with what I have to share. What does
one with bi-polar even say? My story includes the dramatic highs and lows of the
illness, as well as the pestering urge to slit my wrists when I am being
emotionally abused. I had asked myself: “When does it get good again?” I
remember two summers ago at nightfall, sitting by the pool on a ledge, having a
cigarette, just plotting my suicide and precisely how I was going to do it. I didn't
really want to kill myself, because somewhere deep down, just waiting to get
out, was happiness.
As
a teenager, I was on Zoloft and anti-anxiety medication, and I held a job throughout
my teens and twenties with a vibrant smile on my face. Nothing could hold me
back. It was in my late twenties that I noticed that I had I started to become
very manic. My moods were up and down and I was crying all the time. My
depression and work pressures had taken a toll on me. I was burnt out and I desperately
needed the right medication. The doctors put me on all different kinds of
medications that didn't work; and the worst part was that none of them listened
to a word I had to say. It was very stressful with all the side effects that I
experienced from the medications. It was especially hard having my family see
this roller coaster of my illness.
My
father has schizophrenia and unfortunately went to prison for murder of another
family member. I could not deal with this. It was far too much for a girl like
me to handle. I received no support concerning the incident, so I had to learn to
survive on my own. This was very hard considering the pressures of being
bi-polar as well as there being a death in the family. Later on, I went back to
my father’s apartment, lit a candle and said a prayer. I needed closure and I
think that this was one thing that I could do for my family member. Just
thinking about her, I remembered her smile and the way she always laughed, big
and loud. It fit her and her laugh made me happy.
I
was hospitalized four times for my illness and due to not being on the right
medications. Nothing seemed to work for me. A year ago, I was talking about my
father with my counselor and it opened a floodgate of emotion. I was in the state
of mind in which I believed that any man would hurt me, rape me or kill me. This
led to me thinking about my father; I was very paranoid, thinking there was serious
harm coming my way. So I went into the hospital and right away the doctors put
me on Ativan which worked wonders, because my anxiety had skyrocketed. It had
been spiraling out of control, like a enchanted spider web woven of silk thread.
I stayed in the hospital for a week and they also put me on Haldol. A new diagnosis
was revealed and I was considered to be bi-polar with hints of schizophrenia. I
was able to accept this new diagnosis.
I
finally found a new doctor who was heaven-sent for me. I have been with her for
the past two years and I’m doing beautifully. I told her right away to put me
on Zoloft because I was so depressed and the bi-polar medication was not
enough. I needed something else; the combination of medications just didn't
feel right to me. So the doctor put me on Zoloft and added Seroquel for my
highs and lows which worked wonders. I noticed a huge difference. I had been
aware of my highs and lows, and by letting my doctor know, the result was no
less than a miracle. She upped the Seroquel a bit and I have been more balanced
than I have ever been in my life. I was also put on Haldol which I felt in awe of,
from the improvements I experienced. It felt like sunset at nightfall, or a
like a colorful rainbow on a gloomy, misty and cloudy day. It just works for
me. I haven't relapsed yet and I get a shot of Haldol each month now. The only side
effect I experience now is tremors but that’s why I take Cogentin.
I
recently began receiving social security; but to tell you the truth I love it!
I get to do things that I never did in my teens because of working so much. Now
I can sit in a cafe with a good cup of coffee and just enjoy reading a novel
with the sun streaming in. I’ve never felt this great before in my life! I'm
more creative; painting and writing, reading and getting out more. I'm so blessed.
See, I knew there was happiness just waiting to get out – I think it was just
waiting for the perfect time. At first it was a lot of work, but happiness gets
easier and you learn to love being happy, and re-learn how to love yourself and
not to feel sad all the time. It’s not perfect but it gets better and you can
be happy. I think we all want to be happy. Like I said happiness just waits for
the perfect time to come out. I'm happy, one day at a time, and I hope you,
too, can be happy one day at a time.
SSD Trust Fund Projected to Run Out Of Cash By 2016
Edited by Dan Frey
The disabled become victims
of a failing economy
I am summarizing a
report written by Brian Faler for The
Washington Post May 30, 2012. The
Social Security disability program’s trust fund is projected to run out of cash
far sooner than the better-known Social Security retirement plan or Medicare.
That will trigger a 21 percent cut in benefits.
Part of the reason for
the rapidly increasing costs is that the 77 million baby boomers projected to
swamp federal retirement plans will reach the disability program first. That’s
because almost all baby boomers are at least 50 years old, the age at which
someone is most likely to become disabled.
The growing costs are
also a result of the failing economy. When people can’t find work and run
through their other benefits, many turn to disability benefits for assistance.
Applications to the
disability program have risen more than 30 percent since 2007 and the number of
Americans receiving disability benefits is up 23 percent.
The disability program
pays benefits averaging $1,111 a month, with the money coming from the Social
Security payroll tax. The program cost $132 billion last year, more than
the combined annual budgets of the departments of Agriculture, Homeland
Security, Commerce, Labor, Interior and Justice. That doesn’t include an
additional $80 billion spent because disability beneficiaries become
eligible for Medicare, regardless of their age, after a two-year waiting
period.
The disability program
is projected to exhaust its trust fund in 2016, according to a Social Security
trustees report released last month. Once it runs through its reserve, incoming
payroll-tax revenue will cover only 79 percent of benefits, according to the
trustees. Because the plan is barred from running a deficit, aid would have to
be cut to match revenue.
People whose benefit
applications are rejected can appeal to administrative-law judges, and
statistics show some judges are far more likely to approve benefits than others.
One reason is that the program, which once focused largely on people who
suffered from strokes, cancer and heart attacks, increasingly supports those
with depression, back pain, chronic fatigue syndrome and other comparatively
subjective conditions.
Statistics show that
once people enter the program they are unlikely to leave, with fewer than 1
percent rejoining the workforce. Many worked “menial” jobs that didn’t offer
health insurance, and the program gives them an opportunity to join Medicare
long before they might otherwise qualify.
The agency faces a
backlog of 1.4 million reviews it’s supposed to periodically conduct to
ensure beneficiaries are entitled to stay on the rolls. The agency has said it
doesn’t have the money to do the reviews.
Some government
officials are more optimistic than others about adequately funding the
disability program and avoiding this catastrophe.
Recovery International at 75
By Marilyn Schmitt, Ph.D.
The effectiveness of a little known
program
In 1937, a movement began to be
shaped that would improve the lives of many thousands of people suffering from
mental and nervous disorders. The movement became a group-based training protocol
developed by a Chicago neuropsychiatrist, Abraham Low, M.D. In the heyday of
Freudian psychoanalysis, Low saw his patients in the University of Illinois
Psychiatric Research Hospital discharged and returning in a revolving door of
relapse. He began to experiment with tools that would train them to manage
their symptoms and develop resistance to the illness. And he founded an
“association of patients,” choosing the word “Recovery” as its name. Today its
name is Recovery International.
Fifteen years after that
beginning, in 1952, the program was complete: a group-based, peer-led cognitive
behavioral training program that has enabled tens of thousands of sufferers
from mental and nervous disorders to achieve peaceful, productive, and normal lives.
Today, with hundreds of weekly group meetings across North America and abroad,
led without required fee by trained volunteer former sufferers, Recovery
International is the “best kept secret” in the psychotherapeutic world.
The Recovery International System
uses highly structured meetings in which participants describe a disturbing
everyday event, their reaction to it, and their coping strategy, ending with
acknowledgement of their improvement compared to the past. The group then
comments on the story using the principles, concepts, and language established
by Abraham Low. This deceptively simple format continually restructures the
thinking and behavior of each individual at whatever pace that person can
achieve. Readings and other resources reinforce this “getting well” process.
Between-meeting practice of the principles is constantly stressed.
The Department of Psychiatry of
the University of Illinois-Chicago has just concluded a study of 126
participants, most with long-standing serious disorders, attending Recovery
International meetings. The study concludes that after one year of attendance,
most subjects experienced significant reductions of depressive and anxiety
symptoms as well as decreased domination by symptoms. They were using fewer
mental health and social services, displayed increased coping skills,
self-esteem, and feelings of hope. The more meetings they attended, the more
benefit they experienced. See the report at www.lowselfhelpsystems.org.
In a 1973 issue of Psychiatric News, Karl Menninger
publicly expressed regret that he had not paid attention to Recovery
International. He spoke of "legions of people whose lives were saved or
fulfilled by" this self-help organization. How many more legions have been
saved since then, and yet the Low System remains a secret to the vast majority
of mental health professionals and the public.
As Recovery International
celebrates its 75th anniversary in 2012, it is time for that
disregard to come to an end, for consumers and professionals alike. The Low System,
as delivered in Recovery International meetings, offers a time-tested,
broad-based, low-cost—and now verified—benefit to those suffering from mental
and nervous disorders.
Note: Learn more about Recovery International and other Low
System-based programs at www.lowselfhelpsystems.org.
Book Review: Living for the Moment
Reviewed by Jack M. Freedman
A collection of poetry by Stephen J. Fernbach
I will admit that sometimes I fall victim to
procrastination, which is why I am glad that I now have a spare opportunity to
review a book of poetry. As a self-published poet myself, I can always
appreciate work written by authors who genuinely enjoy the art of poetry. In
many cases, we get to see the evolution of the poet as he or she progresses
throughout the years and develops an astute maturity. This is the case of Living
for the Moment, written by Stephen J. Fernbach.
This is Mr. Fernbach’s third book of poetry. He has written
quite a number of personal accounts over the span of his life. Oftentimes,
while I read a book of poetry, I randomly turn to a page and read it instead of
reading the whole book from cover to cover. While engaging in this process, I
found a couple of poems that stuck out.
Many of these writings dealt with the Jewish experience. As
a person of the Jewish faith, I was able to relate with many of the sentiments
expressed in the book. Such poems include “Israel Is My Shambala” and “First the
Dinner Bell, Then the Shofar Sounds.”
The first poem expresses a deep love for the land of milk and honey. Such
memories expressed include landmarks, such as the Sea of Galilee and the
Western Wall. My own memories of staying in a kibbutz for a couple of days and
being moved to tears while praying against the oft nicknamed “Wailing Wall”
were evoked. The second poem includes some free-floating thoughts on the high
holiday of Rosh Hashanah. For those unfamiliar with this holy day, Rosh
Hashanah is the Jewish new year and a shofar is a ram’s horn used as a musical
instrument to ring in the new year in a somber fashion. I liked the memories
expressed, including the Jewish customs and a dissenting message regarding
Iranian president Mahmoud Ahmadinejad visiting Ground Zero and speaking at
Columbia University.
I would make one friendly recommendation though, which is for
the author to flesh out his ideas a little bit more. This piece of advice is
given for poems that sometimes ended abruptly. It takes a lot of talent to
create imagery that inspires people and Mr. Fernbach definitely has that talent.
However, in the words of Oliver Twist, “Please Sir, can I have some more?” That
is, more complete thoughts that are wrapped up without leaving something to be
desired.
Overall, I enjoyed reading this book. I personally hope that
Mr. Fernbach writes a fourth book. I would like to see his craft further develop.
Please write on, Mr. Fernbach. Keep poetry alive!
Nutritional Psychiatry Blackballed by U.S. Psychiatric Establishment
By
Michael Gottlieb, B.S.
Ask
your doctor about minerals and supplements for your mental health
In
1945, two Canadians psychiatrists—Dr. Abram Hoffer and Dr. Humphrey Osmond—began
treating Canadian soldiers returning from Japanese prisons in treatment
protocols for severe mental illnesses including schizophrenia and depression.
They provided a healthy diet including avoidance of sugars and sweets with
added minerals. They sought to publish their research and clinical experiences
in the U.S. around 1955 but were blackballed by the medical and psychiatric
journals who feared losing advertising dollars from the pharmaceutical
companies who were bringing out their first generation of psychiatric
medications.
By
now some three quarters of a million Canadians have been successfully treated
via nutritional psychiatry (aka orthomolecular psychiatry). It has virtually no
side-effects vs. the metabolic poisons touted here in the U.S. and yet it
remains virtually unknown and unused.
The
foods we eat and the liquids we drink have a profound effect upon our brain
chemistry. Certain supplements of vitamins (some in mega doses) and minerals
and amino acids have demonstrated remarkable healing effects upon severe mental
illness. Often a nutritional psychiatrist will use nutritional psychiatry along
with a sharply reduced dosage of traditional psychiatric medications. But here
in the U.S. the psychiatrists and medical doctors have no education, no
training in nutritional healing. It would be, alas, the blind leading the
blind. And the consequences are severe toxic side effects (Toxic Psychiatry by Dr. Peter Breggin) along with the
non-compliance of many patients due to these toxic side effects.
The
brilliant, life saving work of Dr. Hoffer and Dr. Osmmond appears to be
virtually totally ignored here in the U.S. The consequences are severe.
If
the mass media is either ignorant of nutritional psychiatry or muzzled by fears
of retaliation from the powerful pharmaceutical industry, what happens to those
who desperately need healing? Apparently, making money and profits supersede
any priority of bringing healing to the patients.
Short-term
use of chemical medications may be appropriate for certain individuals. Dr. Carl
Pfiefer added to our knowledge of the biochemistry of Schizophrenia and how to
utilize zinc and manganese to control elevated copper levels. Some 70% of
schizophrenics have elevated copper levels in their brains, 20% have depressed
levels. The 2nd benefit is that symptoms are alleviated but not
suppressed so patients are not drugged into submission.
Editor’s Note: The team at New York
City Voices encourages you to talk to your doctor and pharmacist about all
possible treatments for your health, including minerals and supplements. Please
always consult with your doctor and pharmacist before trying any new
treatments.
I Quit Smoking by an Act of God
By
Miriam Wexler
It’s
the toughest thing you will ever do
I
started chain smoking at an early age when I was confined to a ten-month
psychiatric hospital. I was concerned about my weight-gain so my thought was that
if I smoked I would be able to lose weight. Initially I forced myself to
inhale—at the start smoking was not very pleasant. No one at the hospital told
me that the psychotropic medications along with the unhealthy bedtime snacks
would increase my appetite and cause weight-gain.
I
left the hospital about 80 pounds heavier than when I came in. I was obese and
a chronic chain smoker. My self-esteem was below rock bottom.
In
total I chain smoked for thirty years. The first time I stopped I used hypnosis;
it was relatively easy. I told everyone at work that I was going to stop and
used candy (lifesavers) to curb my appetite. I used lifesavers as a substitute
for tobacco. I lost weight and stopped smoking for about five years. I never
thought I would smoke again but unfortunately I did.
During
another hospitalization, I did the unthinkable. I started chain smoking again.
Stopping to smoke the second time was one of the hardest things that I have
ever done. The fact that it was so difficult motivates me to never pick up
again. Also the cost of tobacco today is so expensive. I would rather spend the
money on things I enjoy than something that poisons my body.
I
smoked for another twenty years. I was extremely depressed and cigarettes were
my best friends. In the early 1990s I was homeless and went to live with a
friend for about a month while waiting for permanent housing. I was not allowed
to smoke at all during that month.
When
I moved to a more stable living situation I started smoking again. I was alone
and isolated and again cigarettes were my best friends.
At
one point I realized that cigarettes would kill me if I continued smoking. I
focused my energy on kicking the habit, using many methods both alone and with
the help of others to stop. For me perseverance was strength.
Here
are some of the ways I tried to kick the habit:
1)
Binghamton
University in upstate New York had a 24-hour warm-line for people trying to
quit that I called and found very helpful;
2)
I
went on two tobacco withdrawal retreats that were failures because I was too
socially inept to connect with other smokers who probably never had to deal
with mental illness;
3)
I
tried the patch, smoked despite the patch, so I stopped it;
4)
I
went to several NA (narcotics anonymous) groups, which were somewhat helpful;
and
5)
I
was able to get acupuncture through my medical coverage—I kept at it—and it
cured my urges for one or two days at the most.
Over
the summers of the early to mid-1990s I tried to quit about 30-40 times. Then
on one seemingly insignificant day I had a cold and by an act of God,
perseverance and much practice I stopped at long last.
Sometime
later, with the help of therapy and DSNY (dress for success New York), a
program that provides professional clothes to low-income women, I joined a running
team and came in 3rd place in a 5-kilometer race in Central Park. I
became a runner.
Almost Torn Apart by Psychosis
By M. Johnson
I finally have some hope for a life
My struggle with schizophrenia began
with paranoia at college and at work. I began reading messages in litter and in
graffiti, and eventually overhearing people I thought were tenants living
adjacent to my apartment. I was a school dropout and lived through school with
the (false) assumption of being infected with HIV and Methicillin-resistant Staphylococcus aureus (MRSA,
a type of antibiotic-resistant strain of harmful bacterium). I also lived
through what I believed were the monitoring of my actions, emotions, thoughts
and sensations through what I thought were cameras and a microchip installed in
me by an enemy sexual partner. I eventually stayed indoors except for work,
afraid of being shot by people outside my apartment. I slept in the bathtub to
avoid radiation from things I thought the apartment manager allowed to be
installed in the walls—all part of an upper-class plan, I thought, to frighten
me into committing suicide.
I was living alone, and I eventually
fled my apartment late one night. I had awoken to a voice which said: "It
smells like cancer..." A smell like a hospital seemingly dropped from the
ceiling. I got up, opened the windows, and left my apartment. As I left the
apartment, I heard a voice say, "Let it out..." I had overheard talk
of a propane tank being connected to something. Outside, cars made aggressive
u-turns as warnings that I should not venture further. I had had enough experience
with what was “outside,” so I returned to my apartment and was hit by a wall of
noxious gas as I opened the front door. I breathed it in and it stung my lungs.
I fled the apartment in my pajamas, carrying only enough change to make phone
calls as I was afraid of being tracked by my cell phone GPS. In my wandering
for a pay phone, people would come out of the late-night bars, saying
condescendingly, “It's just Mucinex…”
Several weeks later, my
“technological” voices clarified, “Did we say ‘Mucinex’? We meant ‘Terminex’.”
I went to the hospital after falling down unable to breathe two weeks later,
which the doctors declared was an anxiety attack and asthma. I didn't return home
for six weeks, thinking homeless people infected with MRSA were sleeping in my bed,
and that biological weapons were being released from nozzles installed in the
ceiling, spraying my belongings.
This type of story continued
minute-by-minute for two years. No one but me knew what I was going
through. Eventually, I was living with my mother, who had me voluntarily
detained where I received a clinic phone number. She changed the locks, afraid
I was going to poison her for her efforts at trying to resolve my illness
through religious means. After my mother called the cops, I was homeless,
couch-surfing, and still am. This was the reason that I said I'd have to kill
her, because I would be homeless if I couldn't accept my mother’s impossible, rigid
beliefs, while at the same time not being able to be financially independent
due to the financial issues which had accumulated during my illness.
While still living with my mother, I
found some relief using a therapeutic dose of Eicosapentaenoic acid (EPA, from
fish oil). This resulted in turning challenging, conversational voices into “thought
echoes,” which allowed my objectivity to recognize the possibility that I might
be suffering from paranoid schizophrenia. I eventually moved in with a contact
of my mother, a family which included a man under treatment for schizophrenia.
His sister suggested I try medication, allaying my reservations by suggesting
that I tell the doctor my concerns about side-effects. I did this, and the
doctor responded with several medication options, and the diagnosis of paranoid
schizophrenia. Thanks to the medication, I no longer suffer intrusive symptoms.
To me this has been a lifesaver, as I thought I would always hear voices.
I learned that faith in the pleasure
of life, seeking out new goals, and remaining honest with myself while
accepting help, has been the most beneficial stance taken in recovery. It is
really just going with the flow, and taking the medication and being honest
with the doctor about my concerns, while learning as much as possible, and at
the same time remembering that I am a person, with a life outside of the
diagnosis.
I am no longer fascinated by voices
and delusions, because the medication has made them minimal. I can now concentrate,
and have “my own” thoughts and ideas. A feeling of ownership of my person and
my life has resurfaced, something I thought I would never know.
With my renewed hope in life, and a
return to a sense of myself, I hope to make friends, while finding success in
my endeavors appearing on the horizon. Schizophrenia ravaged my mind to the
point of not knowing dream from reality. Now with the help of medication and
the full acceptance and understanding of friends, I can live an active and
relatively undisturbed life, with the hope of forgetting the delusions and
voices which had become my constant fearful companions. Life, it seems, is
possible again.
From Confusion to More Stability
By Lisa Marie
How I faced my mental illness, found love, motherhood and
studies I enjoy
The dark days of
my illness started in high school. I was full of confused thoughts and
insecurities, feeling that something was wrong with me but not knowing what. My
mom would say how smart and lovely I was and that nothing was wrong with me. I
rebelled against her denial about my condition and I acted out to try to get her
attention so she would finally listen to me. I played practical jokes all the
time; I fought with my sisters and called them nasty names. I insulted my
mother—I was not very nice; but I could not fully control my behaviour. On the
other hand, I was always depressed and I avoided people. I tried to kill myself
with an overdose of Advil I found in the cupboard. When my mom found me and
saved me, I told her I was just sick and I didn’t know why.
I went on to
university and I became a hermit, just sitting in class staring at the teacher,
making disorganized notes and not bothering to socialize. I failed the first
year and I was asked to leave. I was heartbroken that my dream of becoming an
engineer was crashing and burning. I tried again and again to complete my engineering
degree. Finally, I gave up and pursued fashion design. My illness had not yet
been diagnosed and I showed up dishevelled to class. The fashionable classmates
avoided me, barely talking to me despite my pleasant attitude.
I found a job as
a cook, which I loved. I could focus on one thing without needing to socialize;
and I could produce food very fast. It was good, honest work. Most of the
employees laughed at me, but my boss was a great man and he protected me. My
illness made me misinterpret this as romantic love, and I got myself in trouble
with the law for harassment. This was at the lowest point in my illness. I just
wanted a boyfriend to give me the kind of love which I had never felt before in
my life.
Later on, I did
find love, which resulted in my giving birth to our first child. However,
despite great determination, I was not ready to overcome the obstacles in my
way. My husband and I ended up in divorce and he took custody of our child. It
was a most devastating blow for me. I was in tears for months. I can't forget
the mistakes I made that led to my losing my child. I will never make those kinds
of mistakes again.
This experience
led me to accept the reality of what I couldn’t change on my own and I decided
to seek treatment for my mental illness. Things improved greatly from there on.
I was started on
medication that allowed me to live calmly for a couple years—long enough to
find love again and to figure out the kind of mother I really wanted to be. I
am now taking Abilify and it has changed my life for the better. I receive
additional support from a psychiatrist, social worker, my mom, my sisters, my
husband, my in-laws and my friends.
I succeeded in
taking myself off the streets and out of a shelter and moving into my own
apartment in Montreal ; and I began attending a
prestigious university in the heart of Montreal
I
hope to be a great mother to my second son, and to make up for the trauma my
first son went through. I would like to get him back with me one day. I am not
sure about my personal life right now, whether the man I’m with is with me
because he loves me, or he just feels obligated to protect me. But I am happy
that I am healthy and I can at least take good care of myself now. I’m working
on that personal journey to discovering the riches of lifelong love, now that I
have faced and have successfully treated my mental health issues.
Mental Illness Can Seem Like Alzheimer’s
By Kerri Dyan Gentine
Recognizing my illness, I lost friends but I gained myself
“(My good fortune is not that I’ve recovered from mental
illness. I have not, nor will I ever.) My good fortune lies in having found my
life.”—Elyn R. Saks, from The Center Cannot Hold.
As part of my recovery from a nasty manic episode, I have
been spending time with an elderly couple from church. They are lovely people
and the woman, Sally, has Alzheimer’s Disease. I spend two evenings a week with
Sally and her husband, Aubry, eating supper, going for walks, and listening to
Aubry’s reminiscences about his life with Sally. He tells stories about her that
he had learned from her family and friends along the way.
In her earlier days, Sally was a bookworm turned research
librarian. She was also a forthright woman who became a community activist. She
had a keen wit and a sharp tongue. She was known more for her intellect than
her domestic skills. She “wore” her braininess proudly. Now, however, Sally’s
brain is her worst enemy. It is in the process of slowly destroying her and there
is nothing that can be done about it.
Recently, as I was thinking about Sally’s relationship with
her brain, I remembered something I used to ponder concerning myself. Seventeen
years ago I was suffering through a serious depressive episode, one that made
me realize that I probably needed to get help. I hadn’t been able to identify
such spells as depressive in the past. I took my moods for granted as did those
around me. But this time I looked back and made sense of the fact that I had
been experiencing such states of sadness and despondency since I was about
eight years old (I was then 28). The dark moods went away but always came back
more intensely and for longer periods of time than before. In my mind, suicide had
become an option.
I, too, had always been known more for my intellect than
anything else. I was a child genius who enjoyed the benefits of a classical
education and earned a Ph.D. in English. I am a former university professor and
award-winning public radio journalist. I, like Sally used to, “wear my brain”
proudly. During the aforementioned depressive episode, however, I pondered the
irony that while my brain was my dearest friend, it could annihilate me if
given the chance. Over the years I had stopped thinking about this as much
because the day-to-day reality of living with bipolar disorder tends to take
away the luxury of existential ruminations. Sally’s struggle, however, has again
brought this awareness about myself to the forefront of my mind.
A while back, Sally’s son-in-law asked me how I knew Sally
and for how long. I told him that I had met her at church a couple of months previously.
He responded “Oh, so you never knew Sally.” I replied, “She is still Sally.” I
think I made him a bit uncomfortable with this statement. His discomfort reinforced
an awareness that the people who knew Sally before the onset of what Aubry
calls her “condition,” seem to be rather unsettled by her as she is now. I have
come to the conclusion that this is because they have memories of Sally to
compare her with as she is now. Sally, now is incapable of being that woman anymore—the
woman who among other things, was devoted to fighting for the rights of others.
Again, this unsettled me, because there was a time when I
was well loved, admired and considered successful. People wanted to be around
me, to get to know me, to spend time with me. My family in particular, (my mood
changes excepted), saw me as the woman who could do anything I had set my mind
to do, and I could do it all extremely well with a minimum of effort. I was, a
golden girl, lovely, bright, sunny, smart and witty. When I finally did start
seeing professionals during that depressive episode 17 years ago, the people
who knew me had to face the fact that I was in certain ways, a broken person
compared to the vision of loveliness that they had pegged me as being for so
long. I have, sadly, lost many friends because of my condition. And my family
struggles along with me in light of it.
I am, however, much more at peace with myself these days. I
have come to understand that everyone changes and grows, mental illness or not,
Alzheimer’s or not. Sally cannot win the battle she is engaged in with her
brain. It will kill her. I only hope for those who know her that it won’t be
too soon. I, however, stand a fighting chance in my own struggle with bipolar
disorder. It is one battle I intend on winning.
Mental Health Film Festival 2012!
The 8th annual Mental Health Film
Festival in New York City took place last spring and was, as usual, a
resounding success with a turnout of at least 150 people, among whom were
consumers, family members, mental health professionals, advocates and students.
The event was co-sponsored by Community Access, an organization that has been
providing programs for consumers since 1974 and NYAPRS, a statewide civil
rights advocacy group that has been fighting for consumers since 1981. The
theme for this event was Crisis
Intervention: Interacting with the Police, which sometimes ends tragically
as with the death of Iman Morales in 2010 and Shereese Francis, more recently.
Both deaths could have been avoided if the police were trained to deal more
sensitively with situations involving mental health consumers. Carla
Rabinowitz, festival organizer, said, “The festival shined a powerful light on
the growing movement advocating for this and it also shared what too many
people don’t often get to see: people with psychiatric diagnoses just getting
along with their lives like everybody else.” Hope to see you at the festival in
2013.
Expressing Yourself Through Art Can Save Your Life
By Elisabeth Bailey
Subtitle: Being creative more effective than meds
I have always been a creative person and seen life and the
world from different eyes. It was quite apparent just how different I was at a
very young age. After turning five years old I first verbalized suicidal
ideations. Later the same year I announced I would not believe in a God which
allowed so many horrors to occur in this world. Psychiatric appointments have
been a part of my life for as long as I can remember, and every morning and
night, rainbows of pills wait to be swallowed.
I wasn’t a happy child and my home environment was anything
but stable and safe. I grew up with a bipolar, megalomaniac, abusive father. I
feared and reviled him from the start. My mother was submissive, and often
seemed blind to his abuse, so I was left to deal with these situations on my
own much of the time.
As I grew older, I often lived without any close friends or
had a typical social life at all. My depression worsened greatly and I began
experiencing irrational fears. I often comforted myself, daydreaming of
different ways to end my life, to stop the exhaustion of my existence
As I entered college, things began to look up, but new
problems arose. I learned how to make friends and create a social life, but
stress leapt upon me with ferocity. I punished myself for failures, and the
negative self-talk that had been my shadow for so long grew louder and more
powerful.
As mania of my own began to surface more and more, I took
drugs, drank more, and soon found myself utterly exhausted and depressed. It
was early in my college years that I first spent time in a psychiatric
hospital.
After dropping out and starting school again and again through
the years, I gave up. My mental health was poor and it controlled my life.
Either the pain was so great and endless, or mania and hallucinations warped my
logic and self-control. I burned and cut myself on a regular basis, and suicide
attempts became almost a schedulable event. Soon, I tried electroconvulsive
therapy, and was left in an even worse place than before. I was lost. Lost to
my family, my friends, the life I once lead, and most of all, lost to myself.
Through all the insurmountable struggles and disasters, I
turned to art and creative pursuits. It was not until about a year ago that I
realized that expressing myself creatively helped me more than any medication I
had been on, any psychologist or therapist I had seen, and any treatment I had
gone through. It had always been a positive part of my life, and it was always
there.
I have embraced the life of an artist, and find that being
an artist gives my life a sense of purpose. It has always been there for me,
and will always be there. Now I know that when things are awry, I have
something to turn back to, something to re-direct my focus on. When I am manic,
it gives me positive activities to pour my energy into. When I am depressed, it
helps distract me. Though I have always loved art, it is only now that I
realize I have been an artist all my life.
We each have creativity within us. The hard part is learning
to find one’s own way of expressing it, and even harder is embracing that we
are each artists each in our own way. You don’t have to earn a living or have
works in shows to be creative; in fact it really doesn’t matter who you are and
what you do. One needn’t paint the ceilings of a church, write a song that hits
the top of the charts, or re-create an image of a can of soup. You are
a creative being. Explore that part of you which is hidden. Try different
media. Paint, write, dance, sculpt, sing, whatever! It really does not matter
what you try, it is the process that counts. Nothing you create has to be seen
or judged by others, it is just there for you. Tap into it, and you may find
that, just as I have, art may be the best medicine for us all.
Editor at Large: As I See It
By
Marvin Spieler
Some
random thoughts about our plight
Government Cuts
I
bragged to a new counselor about the length of time I’ve been hospital-free. In
a way I want him to know who I am in this area. He related without mentioning a
name a consumer who has been hospital-free an extremely long period of time.
However, this ended recently. Why? Through no fault of her own, Medicaid took
her psychiatric medicine off the drug formulary, a list of approved drugs for
the Medicaid program. She can no longer receive from her pharmacy the medicine
that helped her stay hospital-free for so many years. The new medicine, I
assume a generic or a much cheaper medicine, was prescribed. Unfortunately,
this wasn’t helpful and caused a relapse. This was a totally unnecessary
consequence!
Hospitalizations
can be costly in many ways. First generation psychiatric medicines are in
generic form making them much cheaper. The government’s theory is this: a
hospitalization is cheaper than the higher monthly cost of the newer second
generation of psychiatric medicines. However, from personal experience and that
of my friends, the effect of the newer medicines are much better. You can stay
out of psychiatric hospitals and have a higher quality of life. Besides, to
have symptoms return by taking generics usually is detrimental in a number of
ways. Your quality of life can hit an all-time low. Paranoia or depression or
manic episodes can reappear. One’s functioning may stop altogether unfortunately.
A
hospitalization may be recommended to readjust to a new combination of
medicines. This would be an ego-deflator. Also the shock of a ward’s
environment can be that of “a house of horrors.” We may have put the idea of a
possible hospitalization behind us. Also, we may lose our self-confidence as
well as a held job. Income will probably be lost. Every day enjoyable
activities may stop as well. Our high quality of life can be lost
unnecessarily.
We
have regressed through no fault of our own. The government’s theory of saving
money put us back in a hospital. This is a downer. Other means of saving money
should be found.
The
solution may be for legislators to spend a week or more on a psychiatric ward.
If they personally knew what it was like on a ward their current policy would
stop and a sane policy of help will occur.
Penny
wise and pound foolish. However, the disruption to our lives supposedly to save
money is extremely severe. I feel we are receiving cruel and unjust treatment
as a result of government financial policies.
Training of
Psychiatrists
Under
Obamacare there is a provision for doctor training. I propose that doctors be
offered scholarships to go into geriatric psychiatry to meet the need to
alleviate the shortage that now exists. I propose a 10% refund in college loans
per each year of service as a geriatric psychiatrist not to exceed five years
of loan forgiveness.
Apartment
Programs
More
of an attempt should be made to join consumers together who will share an
apartment. This can more easily be done if consumers know, trust and are
friends from the provider’s residence program if they have one. Also if a bad
match exists in a supportive or supported apartment, the consumers should not
be forced to coexist. Literally putting consumers together with no
consideration of individual lifestyles is definitely wrong. Consumers are human
beings with feelings and emotions. Showing no regard for an individual’s needs
in apartment programs is cruel and should be avoided.
Note: How would
you improve the mental health system? Let me know. Write to me at newyorkcityvoices@gmail.com or
snail mail me at the address on page 2. Include a way to communicate with you
if I think it is necessary to do so. All correspondence will be kept
confidential.
Consumers Can Be Great Service Providers
By Kurt Sass
Peers have a special way of establishing trust with clients
There is a growing trend for the better in the mental health
field to hire more mental health consumers, especially in direct care
positions. As little as 15-20 years ago, this practice was relatively
non-existent. During my most major depression 12 years ago I did not run into a
single mental health “professional” who ever identified him or herself as a
fellow consumer. Not a single doctor, therapist, clinician, or anyone else. I
spent 2 years getting advice from people (though good-intentioned for the most
part) who had no real first hand experience of what I was going through.
The closest I came was when I was already on the road to
recovery, and my new therapist recommended that I start going to support groups
in addition to seeing her. It was the way she explained it that really hit home
with me: “Now I know we’ve made a lot of progress in the few weeks since we’ve
met, but I feel you really need to talk to others that have gone through
exactly what you have. To be honest, Kurt, I myself have never had Major
Depressive Disorder or Bi-Polar Disorder, so I can’t honestly tell you that I
know how you feel.”
And she was so correct. How would most therapists or
psychiatrists be able to relate to lying in bed helpless for months at a time,
or having constant suicidal thoughts, or not being able to sleep for days on
end due to non-stop, rapid, racing thoughts? With insight like that, no wonder
she stayed my therapist many years.
Once well enough to work, I was fortunate enough to find
employment with Community Access, an organization that helps individuals with
psychiatric disabilities. They also are dedicated to hiring at least 51%
consumer staff, destroying the myth that mental health consumers are bad hiring
risks. (Don’t worry, if you don’t have a psychiatric disability you can still
apply—they don’t discriminate!)
My first position at Community Access was as a Service
Coordinator, and I can’t begin to tell you how many times being a mental health
consumer myself helped my “clients” (we actually use the term tenants as they
each hold their own lease in many of our housing programs) through a difficult
situation. I can’t tell you how many times, but I’m going to tell you of two
right now.
Tenant AB (HIPAA privacy regulations) came to the office one
day (which is located in the same building he lives) and he looked awful. In
fact, he had progressively looked worse over the previous few weeks. He kept saying
his stomach hurt him very bad, but had no idea why. I brought up the
possibility of side effects from his medications as a possible cause. He did
not want to discuss his medications at all. I then mentioned to him that once I
had very similar side effects when I took Lithium. “You took Lithium?” he asked
in utter surprised. Why? He inquired. After explaining briefly my mental health
history, I told him about the side effects I had experienced with Lithium, but
that I had talked to the psychiatrist, who made a change to the medication
whose end result was the disappearance of these side effects.
Once AB knew my story, he really started opening up to me.
He told me all the medications he was taking and about the recent changes in these
meds, which seemed to coincide with his severe abdominal pain. I was able to
convince him to see his psychiatrist, who ended up adjusting his medications to
a level his system could tolerate. Without AB’s trust in me as a fellow
consumer, he probably would have never revealed the information needed to get
him the help he needed.
Tenant CD came into the office one day completely
distraught. She felt that she needed to go the psychiatric emergency room (ER),
but was afraid of what would happen if she was admitted, as she had never been
there before. Having been in numerous psychiatric wards myself, I was able to
tell CD both the good and the bad experiences I had there. CD said she felt
very relieved after speaking to me, as she thought they simply tied most people
to their beds, but felt much better about her decision to go to the hospital
knowing someone who had actually experienced it as a patient. I was able to
escort CD to the psychiatric ER and help ease and comfort her through the
experience.
The bottom line is that clients (for lack of a better term)
feel much more comfortable and empowered when at least some of the staff they
encounter are their peers. Fortunately there are organizations such as
Community Access out there that actually go out of their way to hire people
with psychiatric disabilities, not just to give them an opportunity, but also
because they realize what a valuable asset their experiences bring to their
organizations.
Book Review: Sugar & Salt-My Life with Bipolar Disorder
By Kurt Sass
Sugar and Salt
by Jane Thompson is her story of decades-long battles, setbacks and triumphs
against bipolar disorder.
One thing that sets this book
apart from other writings from people dealing with bipolar disorder (Manic
Depressive Disorder) is that Ms. Thompson does not glamorize the manic phases
of the disorder. I’ve read other people’s accounts of their bipolar disorder in
which the emphasis is so heavily on the manic phases and the deeds done during
those periods (shoplifting, wild sex-capades, etc.) it almost makes the
outsider crave for a taste of the experience of the mania.
While it is true that many
people do feel a burst of energy and creativity during a manic phase, Ms.
Thompson gives the full picture of mania, inclusive of a constant state of
confusion and inability to concentrate—she once went through a period having 27
jobs in 3 years—as well as extremely poor decision-making and its consequences.
She does talk about hyper-sexuality during her manic periods, but not to
glamorize it, yet to explain that during her mania she mistook this sex for
love.
The other thing that sets
this book apart from other writing from people with bipolar disorder is that
she does not write only about her bipolar disorder. I have read other people’s
accounts in which every single sentence was in relation to illness. It was
refreshing to see that Ms. Thompson’s bipolar disorder does not define her,
that it is only one part of her.
On a personal note, what
really kept my interest was the many similarities between myself and Ms.
Thompson. We both have battled bipolar disorder for decades, were both
misdiagnosed for years, and both had parents that were never diagnosed. I am
positive that anyone dealing with bipolar disorder can relate to Ms. Thompson’s
story. I would particularly want to point out the appendix starting on page 155
for some very helpful advice.
In summary, I would recommend
Sugar & Salt to anyone who would
like an honest and accurate account of what it truly feels like to endure and
live with bipolar disorder as well as anyone currently going through the
disorder to see how a long-time member of the club has handled it successfully.
MFY Legal Services, Inc. Announces New Legal Clinics to Assist with Obtaining Access-a-Ride
By Dinah Luck, Senior Staff Attorney, MFY Legal Services,
Inc.
It’s complicated, let attorneys help free of charge
Access-A-Ride (AAR) is an accessible transportation
system operated by the Metropolitan Transit Authority (MTA) for people who
cannot use subways and buses due to their disabilities. The Americans with
Disabilities Act (ADA) requires the providers of public transportation to
provide comparable public transit services to people with disabilities. People
who are unable to take public transit due to a psychiatric disability are
eligible for AAR, but they might face particular problems in the application,
assessment, and appeal process.
Applications
Although the application can be found on the MTA website
at http://www.mta.info/nyct/paratran/access_application.pdf,
the MTA has told MFY that they only accept applications mailed to the applicant
by the MTA. Therefore, applicants should call 877-337-2017 to obtain the
application and an appointment for an in-person assessment. The application
requests, but does not require, medical documentation. However, an applicant
should provide a detailed letter from her treating psychiatrist or therapist
describing the applicant's functional limitations. A letter stating a diagnosis
is not sufficient; the letter should describe the symptoms that prevent the
applicant from taking public transit. An AAR official reported to MFY that the
MTA does not defer to a person's own doctor, but instead relies upon its own
assessment. Nonetheless, it is optimal to submit a detailed letter from a
treatment provider because it will increase the applicant’s chance of being
approved.
All applicants are required to undergo an in-person
assessment that primarily involves testing for physical disabilities. AAR's
reliance on in-person observation over reports from a person's doctor can make
it very difficult for a person with a psychiatric disability to be found
eligible. For example, while a physical test can be given to an applicant who
claims that a physical disability prevents her from climbing stairs, it is more
difficult to ascertain how an applicant’s anxiety disorder impacts her use of
public transportation. An applicant with a severe anxiety disorder, for
example, can appear calm at an assessment, leading to a denial of the
application even if she provided a compelling and detailed letter from her
treating psychiatrist or therapist about the functional limitations to her
accessing public transportation caused by the disorder.
The Disability Rights Education and Defense Fund
recommends that people whose disabilities are not easily evaluated by an
in-person functional assessment tell the evaluator that their disability cannot
be assessed in that format. An applicant with a psychiatric disability should
direct the evaluator’s attention to her doctor’s letter, and explain why her
limitations cannot be observed during the in-person assessment. An applicant
who cannot advocate for herself can bring someone—a friend, social worker,
therapist, or family member—to help. Because the eligibility determination
relies so heavily on in-person observations at assessment centers, rather than
on reports of functional limitations from applicants’ treatment providers, the
AAR assessment may have the effect of discriminating against people with
psychiatric and other invisible disabilities.
How to Appeal a Denial of an Application
If an applicant is denied AAR, she has a right to an
appeal. But the AAR appeals process suffers from several procedural problems
that prejudice appellants. The agency is required to provide appellants with a
notice that states the reasons for the finding and “an opportunity to be heard
and to present information and arguments.” However, the AAR notices are not
individually tailored to the applicant. The AAR notices simply provide a
laundry list of denial reasons. For example, the denial notice for a person who
applies due to an anxiety disorder may include a list of irrelevant and
confusing statements about physical disabilities, such as “You are able to go
up/down subway steps. You are able to travel three to four blocks to
fixed-route bus/subway station.” It is difficult for an applicant to prepare
for an appeal based on a notice that contains only conclusory and possibly
irrelevant statements.
The difficulty in preparing an appeal is exacerbated by
the fact that the MTA does not provide the applicant with a copy of the record
of her case prior to the appeal, nor does it have a process for the appellant
to secure the record prior to the in-person or written appeal. In fact, the MTA
has told MFY that it has no obligation to do so. The only means to obtain the
record is through a Freedom of Information Law (FOIL) request, which is
time-consuming and requires the appellant to pay for copies of her records.
Although MTA points to the availability of the FOIL process as a possible
remedy of its failure to provide the record on appeal, MFY has learned that it
refused to adjourn an in-person hearing until the FOIL records were
produced. Without the record, an
appellant cannot examine the assessments or other evidence relied on by the agency
when it denied her application. This leads to an applicant being confronted at
the hearing with evidence she's never seen, depriving her of the opportunity to
prepare a challenge to the evidence.
Finally, although the MTA offers two options for an
appeal—in writing and in person—it has no publicly available written procedures
that describe its appeal processes. Based on the information we have been able
to gather, MFY recommends the in-person appeal because testimony from the
applicant and, if possible, a mental health professional can be more compelling
than a paper review. In addition, a paper review suffers from the same defects
as the initial assessment—the decision will be based primarily on the AAR
in-person assessment, which the MTA weighs more heavily than an assessment by
the applicant’s own treatment provider.
MFY Legal Clinic to Assist AAR Applicants
To try to
remedy these and other problems, MFY Legal Services, Inc. and Pillsbury
Winthrop Shaw Pittman LLP are launching a pro bono project to help people
obtain and maintain eligibility for AAR services. We’ll be holding AAR Legal
Clinics at independent living centers, senior centers, and other community
locations. During those clinics, volunteers will provide a range of services,
including helping people fill out the AAR application, request MTA records
regarding an adverse eligibility determination, appeal a denial of AAR services
to the Paratransit Appeals Board, appeal a suspension of AAR services, or file a
complaint about AAR services with the MTA. To find out the details regarding
the next clinic, please call 212-464-8110 or go to www.mfy.org.
Living in a Horror Movie
By
Ashley Popoff
I
still hallucinate when the sun goes down
My
name is Ashley Popoff and my story starts when I was 10 years old and was
attending 5th grade in public school. For some reason, I was having
thoughts of suicide. At 10 years old, no child should be suicidal. It was
terrifying for me and my parents. No one knew what was wrong, and some people
thought that I was cutting myself just for “attention.” So I was left untreated
and suicidal until I finally went to a doctor at age 14. This was during my
first year of high school. In my home town, high school starts in the 9th
grade and goes through the 12th grade.
I
was starting to wonder what was wrong with me. So I went to see a doctor who thought
that I was bipolar, so he started me on different types of medication. I went
to the doctor every Friday for about 2 years. He was trying to get my meds
straight and couldn't figure out why it wasn't helping. It made things worse
for me, always being on some type of medication. My eyes got blurry; my hands
would shake; I would go into catatonic states of not speaking or moving; and I
got gallstones which had to be removed when I was 16. That same year while I
was in 10th grade, I was being home schooled because of my symptoms
of paranoia, depression, delusions and hallucinations. I was unable to go to
public school because I missed so many classes due to my symptoms. I thought
that every one hated me and that every one was out to get me. It was terrifying
to walk down the hallways at school and all of the teachers thought I was a bad
student because my grades were bad from missing so much school. I wish I could
tell them now that I wasn't a bad student, that I just had an illness. I still
can’t walk into a school-like building because it creates so much anxiety for
me.
I was
later diagnosed with schizophrenia, and put on antipsychotic medication to help
with some of the symptoms. The way that my illness affected me was terrible; my
doctor told me he believed it must be like living in a horror movie. I couldn't
go outside because I was afraid all the people were watching me from outside
their homes and were out to kill me. I couldn't walk past something that was a
potential for people to hide behind: things like parked cars, bushes, trees, hallways,
doors, fences; things like that terrified me. I couldn't ride in cars because I
was afraid that we were always going to crash and I was doomed to die. I didn't
like going into stores because I was afraid all of the security cameras were there
to watch me and to make sure I couldn't get away, and that the other shoppers
were following me. It affected my life to the point where I couldn't do things
that I wanted to do and I did things that I wished I had never done.
Now
I am 18 and cannot work because I still have fears of people. The fears aren't
as bad as they were, but talking to strangers still makes me go into a panic
mode, and I freak out. I tried working once but the time came that I had to
talk to someone I didn’t know and I panicked. I couldn't speak, I couldn't
move, my heart was racing and I was just shaking. I am unable to work because
of my schizophrenia and I hope I can live on disability for the rest of my
life. I had a dream once to be a baker and open up my own pastry shop, but my
fear of people and schools keeps me from going to a college to train and keeps
me from dealing with people if I were ever to open up my own bakery. I still
hallucinate, and when the sun goes down and the house is quiet I see things
that aren't there and they terrify me so badly that sometimes I can’t sleep.
Sometimes I see aliens at the foot of my bed watching me or dead people staring
in the windows at night. The things that I see are absolutely terrifying. I
have never been violent and I hope that with this story I can create awareness
about schizophrenia. Until about a week ago my best friend of 8 years found out
that I have schizophrenia and she didn't even know what it was. Not a lot of
people know what it is and I always wish that somehow I can create awareness, so
people aren't afraid and so that people are more accepting of people with
severe mental illness.