Lisa was as brilliant as she was beautiful . Even as a small child her insight and intuition astounded friends and family alike . Her maturi...
Sunday, May 19, 2013
The Genius Claimed By Schizophrenia: Memories Of My Sister
Lisa was as brilliant as she was beautiful. Even as a small child her insight and intuition astounded friends and family alike. Her maturity and intelligence excelled long before the adolescence which brought about the physiological changes which seem to have acted as a catalyst in the onset of the severest form of schizophrenia. Previous to the chemical carnage of unmatched physiological components in her brain, namely the neurotransmitter dopamine and its receptors, she was ahead of her years, her time and certainly ahead of me.
As early as age seven her concentration and comprehension levels amazed me. Although only ten myself and without descriptive vocabulary, I could see this clearly. She would often be charged with explaining to me plot twists in movies we would watch together as kids. And it would be she, the little girl, who would have to comfort me, her older brother, concerning the unreality of scary monster movies.
Also, whole concepts and emotions were conveyed with a single glance. Sure, we also bickered and carried on as siblings do, but memories of things like the three of us on weekends at our dad’s place in the country, stacked on a snow sled racing down a hill, careening toward a snow bank, the impact of which would result in three snow angels being made to the sound of our uncontrollable laughter, far outweigh those of who spilled the milk or who broke the vase (by the way, it was me mom!).
By the age of only thirteen, she had begun a modeling career despite her lack of the height so sought after in that business; such was the power of her beauty. This she initiated and carried out of her own accord amidst ongoing discussion and concerned warnings from both loving parents about any heartache she may have been setting herself up for. It did not affect her grades in school. In fact, as she entered her teens her grades only ever improved, this in fact also to the point of concern. I’ll explain and as I do I hope I can offer some early warning signs to be ever vigilant for as you observe the life of your young adult family member or friend.
She persevered in her modeling pursuits despite repeated disappointments until she received an offer to appear on the cover of a hair dye product. She gave me of her complimentary boxes, which featured her precious face and unmatched hair, on which she wrote: “Chris, here’s a copy of the realization of a dream. Something you and I will share over and over again.” I was absolutely inspired by my little sister. Absolutely inspired. Among other lessons she taught me about the power of belief and perseverance.
Over the next few years changes would begin to take place in Lisa that would frighten us to the level of panic; among them academic over-achievement. By the age of fifteen, as a sophomore in high school, a time when most kids are much more concerned with dating than with homework, she voluntarily restricted her social life to near non-existence. Her free time was wholly occupied locked in her room immersed in the study of law and physics. Having grown bored with constantly winning mock trials held at her school, she began to wonder whether science was more to her liking than law. Her intelligence was indeed always a point of pride with all of us. However, when she began, on the rare occasion of her emerging from her studious inner sanctum to casually begin to describe in terms I still can’t understand, the principles of Einstein’s General and Special Relativity, along with, in intermittent bursts between sips of soda, as if discussing the weather, a casual explanation of why space and time bend. I began to say “whoa, is there such thing as too much of a good thing?”
As the reader may well be aware, the nineteen sixties were a time of experimentation with consciousness expanding, hallucinogenic drugs. In keeping with the established pattern of pushing the envelope, Lisa of course participated in this activity. We do not know to what extent this may have contributed to the onset of schizophrenia, as the pattern had been established as early as puberty. Nor do we know whether LSD was involved or only a then prevalent street derivative called mescaline. Both could indeed have acted as catalysts but it is also possible that neither did. The research in these regards is as yet inconclusive. Of course many schizophrenics have never taken hallucinogenic drugs and many people who show no signs of mental illness have. Regardless, I highly recommend qualified interventions if any over the top excessive lifestyle is observed.
Whereas once we had been concerned over Lisa’s highly sophisticated talk of science, we now were horrified over her ever increasingly bizarre manner of speaking, dress and behavior. She began to show one of the primary symptoms of schizophrenia, a loss of normal cognitive faculties, a lack of contact with reality. Not only these, but her beautiful face by the age of sixteen had become marred by severe and uncontrollable acne, almost certainly as a result of the medications prescribed for her now worsening disease. Things began to come to a head. We knew we had to do something. We were just not sure what. Phenomena which I only recently have come to be familiar with began to manifest in Lisa, namely aural and visual hallucinations; staples of severe psychosis associated with schizophrenia. The panic the family was now experiencing had to be translated to drastic action immediately, especially upon my relating to my mom the following incident which will haunt me for the rest of my life.
Lisa came into my room and sat on my bed for a chat. It had become increasingly uncomfortable to talk with Lisa over the previous months because it had become apparent that there was something very wrong, as her conversations lacked cohesion. Well, the camel’s back was about to give in a big way. My beautiful sister proceeded to explain to me that she was indeed the second coming of Christ. This, I would come to learn is another staple of schizophrenia; delusions of grandeur of a religious nature. My stomach trembled in waves of nervous spasms as I related this to my mother because both mom and I knew, even as the words were leaving my mouth, that institutionalizing Lisa could be avoided no longer.
That was 1985. Since then, ground-breaking milestones have been achieved with antipsychotic medications. Early tertiary intervention coupled with proper diagnosis and treatment can help victims of schizophrenia to live normal lives. This my family urges, because Lisa’s life ended before those medications became available.
Although the State institutions we were forced to place Lisa in provided crude antipsychotic medications in the 1980s like lithium, at least, for the most part, her hallucinations were not as pervasive as before treatments began. However, supervision in these institutions is a disgraceful shame. It is horrifying how easily Lisa was able to separate from her supervision during an outing on October 26, 1987. The abhorrent lack of regard for the mentally ill in this country as is demonstrated so disgustingly by the low level of care these nightmarish carryovers from the days of the sanitariums of the 19th century provide is despicable.
Witnesses at a commuter railroad station stated that Lisa placed herself before an oncoming train. No laughter resulted from this impact. But there was indeed an angel added among the dearly departed, carving her image into the pure light perfection of eternity.
As early as age seven her concentration and comprehension levels amazed me. Although only ten myself and without descriptive vocabulary, I could see this clearly. She would often be charged with explaining to me plot twists in movies we would watch together as kids. And it would be she, the little girl, who would have to comfort me, her older brother, concerning the unreality of scary monster movies.
Lisa and I had an almost symbiotic psychic connection, which transcended our biological kinship. We were spirit-kin, siblings in eternity and this we remain, only temporarily disconnected on the sensory level. We would often say, with perfect simultaneous spontaneity, exactly, word for word, what the other was saying in reaction to a given thing.
Also, whole concepts and emotions were conveyed with a single glance. Sure, we also bickered and carried on as siblings do, but memories of things like the three of us on weekends at our dad’s place in the country, stacked on a snow sled racing down a hill, careening toward a snow bank, the impact of which would result in three snow angels being made to the sound of our uncontrollable laughter, far outweigh those of who spilled the milk or who broke the vase (by the way, it was me mom!).
By the age of only thirteen, she had begun a modeling career despite her lack of the height so sought after in that business; such was the power of her beauty. This she initiated and carried out of her own accord amidst ongoing discussion and concerned warnings from both loving parents about any heartache she may have been setting herself up for. It did not affect her grades in school. In fact, as she entered her teens her grades only ever improved, this in fact also to the point of concern. I’ll explain and as I do I hope I can offer some early warning signs to be ever vigilant for as you observe the life of your young adult family member or friend.
She persevered in her modeling pursuits despite repeated disappointments until she received an offer to appear on the cover of a hair dye product. She gave me of her complimentary boxes, which featured her precious face and unmatched hair, on which she wrote: “Chris, here’s a copy of the realization of a dream. Something you and I will share over and over again.” I was absolutely inspired by my little sister. Absolutely inspired. Among other lessons she taught me about the power of belief and perseverance.
Over the next few years changes would begin to take place in Lisa that would frighten us to the level of panic; among them academic over-achievement. By the age of fifteen, as a sophomore in high school, a time when most kids are much more concerned with dating than with homework, she voluntarily restricted her social life to near non-existence. Her free time was wholly occupied locked in her room immersed in the study of law and physics. Having grown bored with constantly winning mock trials held at her school, she began to wonder whether science was more to her liking than law. Her intelligence was indeed always a point of pride with all of us. However, when she began, on the rare occasion of her emerging from her studious inner sanctum to casually begin to describe in terms I still can’t understand, the principles of Einstein’s General and Special Relativity, along with, in intermittent bursts between sips of soda, as if discussing the weather, a casual explanation of why space and time bend. I began to say “whoa, is there such thing as too much of a good thing?”
- We all indeed began to worry increasingly as uncommon characteristics and behavior gave way to the unusual and from the unusual to the horrifying.
- All endeavors or lifestyle changes became a matter of extremes.
- She began to enter a phase of personal neo-sixties, retro-flowerchild exploration into a period she felt she resonated with during a time when kids her age were immersed in the pop culture of the early eighties.
- Again, there may be a point of pride in seeing your little sister more into Stephen Stills than Boy George, but ultra extremes are frightening and I urge vigilance against them in any loved one’s behavior.
As the reader may well be aware, the nineteen sixties were a time of experimentation with consciousness expanding, hallucinogenic drugs. In keeping with the established pattern of pushing the envelope, Lisa of course participated in this activity. We do not know to what extent this may have contributed to the onset of schizophrenia, as the pattern had been established as early as puberty. Nor do we know whether LSD was involved or only a then prevalent street derivative called mescaline. Both could indeed have acted as catalysts but it is also possible that neither did. The research in these regards is as yet inconclusive. Of course many schizophrenics have never taken hallucinogenic drugs and many people who show no signs of mental illness have. Regardless, I highly recommend qualified interventions if any over the top excessive lifestyle is observed.
Whereas once we had been concerned over Lisa’s highly sophisticated talk of science, we now were horrified over her ever increasingly bizarre manner of speaking, dress and behavior. She began to show one of the primary symptoms of schizophrenia, a loss of normal cognitive faculties, a lack of contact with reality. Not only these, but her beautiful face by the age of sixteen had become marred by severe and uncontrollable acne, almost certainly as a result of the medications prescribed for her now worsening disease. Things began to come to a head. We knew we had to do something. We were just not sure what. Phenomena which I only recently have come to be familiar with began to manifest in Lisa, namely aural and visual hallucinations; staples of severe psychosis associated with schizophrenia. The panic the family was now experiencing had to be translated to drastic action immediately, especially upon my relating to my mom the following incident which will haunt me for the rest of my life.
Lisa came into my room and sat on my bed for a chat. It had become increasingly uncomfortable to talk with Lisa over the previous months because it had become apparent that there was something very wrong, as her conversations lacked cohesion. Well, the camel’s back was about to give in a big way. My beautiful sister proceeded to explain to me that she was indeed the second coming of Christ. This, I would come to learn is another staple of schizophrenia; delusions of grandeur of a religious nature. My stomach trembled in waves of nervous spasms as I related this to my mother because both mom and I knew, even as the words were leaving my mouth, that institutionalizing Lisa could be avoided no longer.
That was 1985. Since then, ground-breaking milestones have been achieved with antipsychotic medications. Early tertiary intervention coupled with proper diagnosis and treatment can help victims of schizophrenia to live normal lives. This my family urges, because Lisa’s life ended before those medications became available.
Although the State institutions we were forced to place Lisa in provided crude antipsychotic medications in the 1980s like lithium, at least, for the most part, her hallucinations were not as pervasive as before treatments began. However, supervision in these institutions is a disgraceful shame. It is horrifying how easily Lisa was able to separate from her supervision during an outing on October 26, 1987. The abhorrent lack of regard for the mentally ill in this country as is demonstrated so disgustingly by the low level of care these nightmarish carryovers from the days of the sanitariums of the 19th century provide is despicable.
Witnesses at a commuter railroad station stated that Lisa placed herself before an oncoming train. No laughter resulted from this impact. But there was indeed an angel added among the dearly departed, carving her image into the pure light perfection of eternity.
Sunday, December 25, 2011
Poetry : The Mirror
The Mirror
She was the best friend I ever had,
becasue she didn't leave when things were bad.
Thoughout my life, she'd periodically appear
Whenever I was afraid, she took away the fear.
Together we laughed, told jokes, and even occasionally cried,
Whenever I went on an emotional rollercoaster, she too took the ride.
Sometimes I couldn't believe in her, when life's ways began to get rough.
But she'd always say together we'll stand, together we are still tough enough.
I owe her my life becasue without her I wouldn't be
She is the reflection in the mirror, THE REFLECTION IS ME...
She was the best friend I ever had,
becasue she didn't leave when things were bad.
Thoughout my life, she'd periodically appear
Whenever I was afraid, she took away the fear.
Together we laughed, told jokes, and even occasionally cried,
Whenever I went on an emotional rollercoaster, she too took the ride.
Sometimes I couldn't believe in her, when life's ways began to get rough.
But she'd always say together we'll stand, together we are still tough enough.
I owe her my life becasue without her I wouldn't be
She is the reflection in the mirror, THE REFLECTION IS ME...
Friday, December 23, 2011
Poetry : The Road to Discovery
The Road to Discovery
Take baby steps
Moving one at a time
First step
Take your medicines
Medicines are antidotes
Second step
Gain control of your feelings
Become one again
Regain family and friends
Somehow, somewhere down the road
Third step
Trust again
Not an easy step
But vitally important
Fourth step
Keep faith in god
Do what you can
Motivate yourself to do more
Push, push, push
Until all the steps come together
THE ROAD TO DISCOVERY
But, the opposite, is even worse
It's lonely, clumsy, and irritable
Not like anything you've ever
Experienced or want to experience
In your life.
Take baby steps
Moving one at a time
First step
Take your medicines
Medicines are antidotes
Second step
Gain control of your feelings
Become one again
Regain family and friends
Somehow, somewhere down the road
Third step
Trust again
Not an easy step
But vitally important
Fourth step
Keep faith in god
Do what you can
Motivate yourself to do more
Push, push, push
Until all the steps come together
THE ROAD TO DISCOVERY
But, the opposite, is even worse
It's lonely, clumsy, and irritable
Not like anything you've ever
Experienced or want to experience
In your life.
Saturday, December 17, 2011
Poetry : The Crystal Palace (Revisited)
The Crystal Palace (Revisited)
I sit alone, on hold, in a narrow hospital room.
An interminable wait, during which my panic mounts incrementally, until a tall, young psychiatrist enters, all arms and legs, bent over, attacking the floor as he strides-bulls toward me, chart in hand, scowling ferociously. He does not speak to me. He scans my chart. He lifts his pen from his pocket to take my history. The man does not know my history has already been taken this night.
For an instant, I am back inside the curtained picture-taking booth at Grand Central, hunched forward. The machine whirs as over an infinitesimally small number of seconds it fixes me. Afterward, extracting the strip, startled-puzzled-exultant, I look upon three different me's. Each begging for a history. As, veritably the time-traveling man, I happen every minute, second, millisecond.
"Is it Spring 1977, or Spring 1976?" I ask now, timidly, my voice breaking. At some level I know it is Spring 1978 and that I lost her. That it ended badly for all of us, most of all for me, but I am hearing as well echoes of that earlier spring, the real connectedness, however tentative, and I am overwhelmed with the pain and loss. And with terror.
For this man does not answer me. He continues to scowl. I want to run from him. I begin to sing, loudly, angrily, to the tune of "Red River Valley." But a different set of lyrics that tell of betrayal.
Still the psychiatrist continues to scowl, and now, backing away, he scrawls in the chart. Whereupon, having never spoken a word, he turns and leaves. Whereupon, they come for me, stick me with the needle and lock me in the room for the night.
In the morning, duly mortified, my cheeks puffed, hanging--the Haldol faceover--I sign myself out.
I sit alone, on hold, in a narrow hospital room.
An interminable wait, during which my panic mounts incrementally, until a tall, young psychiatrist enters, all arms and legs, bent over, attacking the floor as he strides-bulls toward me, chart in hand, scowling ferociously. He does not speak to me. He scans my chart. He lifts his pen from his pocket to take my history. The man does not know my history has already been taken this night.
For an instant, I am back inside the curtained picture-taking booth at Grand Central, hunched forward. The machine whirs as over an infinitesimally small number of seconds it fixes me. Afterward, extracting the strip, startled-puzzled-exultant, I look upon three different me's. Each begging for a history. As, veritably the time-traveling man, I happen every minute, second, millisecond.
"Is it Spring 1977, or Spring 1976?" I ask now, timidly, my voice breaking. At some level I know it is Spring 1978 and that I lost her. That it ended badly for all of us, most of all for me, but I am hearing as well echoes of that earlier spring, the real connectedness, however tentative, and I am overwhelmed with the pain and loss. And with terror.
For this man does not answer me. He continues to scowl. I want to run from him. I begin to sing, loudly, angrily, to the tune of "Red River Valley." But a different set of lyrics that tell of betrayal.
Still the psychiatrist continues to scowl, and now, backing away, he scrawls in the chart. Whereupon, having never spoken a word, he turns and leaves. Whereupon, they come for me, stick me with the needle and lock me in the room for the night.
In the morning, duly mortified, my cheeks puffed, hanging--the Haldol faceover--I sign myself out.
Monday, December 5, 2011
Talking to the Wind: My Sister, My Struggle
The light turns red. I stop my car behind the line and wait patiently. There's still plenty of time to get to class. It's then, out of the corner of my eye, that I think I see her. "Don't turn your head," I tell myself, but I do anyway. It's her.
She's standing on the corner, talking to the wind. She isn't dressed badly, not like the "street people" around her. Her hair is combed and dyed a natural shade of blonde. I let out a breath. At least her appearance is still neat, still normal. But for how long? If the past can foretell the future -- only a few more months. I tell myself that if you just saw her you wouldn't think there was anything wrong with her. It's only the odd things she says or shouts to the people passing by, or to herself, that make strangers pull their children closer. I comfort myself with this lie, this nonsense, and I almost believe it again. Incredible, after ten years of this, I still try to deny my sister's mental illness.
I sink down in my seat, hoping that she won't see me; that she won't call out. I don't want anyone to know she knows me.
"God, why did this happen to me, to my family, to her? And why can't we stop her deterioration? I can't, we can't force her to take her medication. In time, when the paranoia takes over and the hallucinations become constant, the cops will come and take her away; then she'll be hospitalized. Then she'll get the medication she needs. But why, God, does it have to get that bad? It humiliates her. I know it does. I know that someplace inside of her she is aware of all that is happening and it tears at her soul."
"Do you hear me, God, when I pray for her? Sometimes I fear that you're just standing by, watching. But other times, I know you're not. How else could she have come through the dangerous hours and places she's been? But God, it seems like such a waste. So much intelligence. So much creativity. So much willingness to love and be loved-all fragmented and twisted like a madman's art. If I had your power, I would make her illness go away."
The light changes to green. I hit the gas pedal a little harder than usual and speed across the intersection, seeking the safety of the next block and my own life. I put houses and trees between her and me. But it doesn't work; my thoughts are still back there on that corner with my sister.
"I know she's lonely, God. Maybe that's why she's on the street. Maybe she's trying desperately to make a connection with someone, something-trying to stay afloat, hoping that just being with people will give her a tiny hold on reality. Maybe, that's why she phones me so often and everyone else she knows-everyone else who will listen. I wish I could listen more, God. I do listen for a little while. But then, you know, she says those things, those mean, vicious things. She puts her finger in my open wounds. How does she do that? Why do you let her? What good does it serve? I get so mad and say things back. Then she gets angry. Funny, there's nothing delusional about her when she's angry. Does she do that on purpose? Is it another way to stay in touch? Sounds stupid, sound like there should be a better way, but it also sound possible. Human beings are so complex -- not at all like the people on television or in books."
I park the car and get out, slamming the door. "God, I hate her. I hate her because she makes every family gathering so uncomfortable. I hate her because of the vicious things she says. I hate her because...." The concrete at my feet leads to my class and my orderly and safe life, but I can't take that path just yet. I lean against the car and frowning, I bow my head.
"God, I hate her most of all because she shows me up for what I really am -- a phony. I don't love, do I? I trade affection. If people are kind to me I return their kindness. Oh, sometimes I lend them kindness first, but if they don't return it, it's goodbye. It's not supposed to be that way, God, is it? When you said love one another, you meant be committed to their welfare even if they aren't or they can't be committed to ours. My sister can't love me right now. Maybe, someplace inside her, she wants to, but I see that she can't."
I chew my lip as I lift my eyes from the ground to the great buildings of the college campus before me. Then, looking beyond them, I see the immense blue sky. I hesitate, afraid of my next thought, but then decide it is what I want.
"Lord, teach me to love her. Really love her. But Lord, help me to be wise in my loving. Don't let me think I can meet all her needs. They're too vast. Don't let me think that loving her will cure her. Instead let me be humble, satisfied to help in the small ways you show me. And don't let me expect gratitude. Remind me that it's enough to know that I am pleasing you. Lord, let me rest her present and her future in your hands. Help me to believe that all of this is fitting into your plan and when I forget these things, Lord squeeze my hand."
I adjust my books and start off for class. As I walk, I decide that when I get home I'll call my sister. This time I'll reach out for her.
She's standing on the corner, talking to the wind. She isn't dressed badly, not like the "street people" around her. Her hair is combed and dyed a natural shade of blonde. I let out a breath. At least her appearance is still neat, still normal. But for how long? If the past can foretell the future -- only a few more months. I tell myself that if you just saw her you wouldn't think there was anything wrong with her. It's only the odd things she says or shouts to the people passing by, or to herself, that make strangers pull their children closer. I comfort myself with this lie, this nonsense, and I almost believe it again. Incredible, after ten years of this, I still try to deny my sister's mental illness.
I sink down in my seat, hoping that she won't see me; that she won't call out. I don't want anyone to know she knows me.
"God, why did this happen to me, to my family, to her? And why can't we stop her deterioration? I can't, we can't force her to take her medication. In time, when the paranoia takes over and the hallucinations become constant, the cops will come and take her away; then she'll be hospitalized. Then she'll get the medication she needs. But why, God, does it have to get that bad? It humiliates her. I know it does. I know that someplace inside of her she is aware of all that is happening and it tears at her soul."
"Do you hear me, God, when I pray for her? Sometimes I fear that you're just standing by, watching. But other times, I know you're not. How else could she have come through the dangerous hours and places she's been? But God, it seems like such a waste. So much intelligence. So much creativity. So much willingness to love and be loved-all fragmented and twisted like a madman's art. If I had your power, I would make her illness go away."
The light changes to green. I hit the gas pedal a little harder than usual and speed across the intersection, seeking the safety of the next block and my own life. I put houses and trees between her and me. But it doesn't work; my thoughts are still back there on that corner with my sister.
"I know she's lonely, God. Maybe that's why she's on the street. Maybe she's trying desperately to make a connection with someone, something-trying to stay afloat, hoping that just being with people will give her a tiny hold on reality. Maybe, that's why she phones me so often and everyone else she knows-everyone else who will listen. I wish I could listen more, God. I do listen for a little while. But then, you know, she says those things, those mean, vicious things. She puts her finger in my open wounds. How does she do that? Why do you let her? What good does it serve? I get so mad and say things back. Then she gets angry. Funny, there's nothing delusional about her when she's angry. Does she do that on purpose? Is it another way to stay in touch? Sounds stupid, sound like there should be a better way, but it also sound possible. Human beings are so complex -- not at all like the people on television or in books."
I park the car and get out, slamming the door. "God, I hate her. I hate her because she makes every family gathering so uncomfortable. I hate her because of the vicious things she says. I hate her because...." The concrete at my feet leads to my class and my orderly and safe life, but I can't take that path just yet. I lean against the car and frowning, I bow my head.
"God, I hate her most of all because she shows me up for what I really am -- a phony. I don't love, do I? I trade affection. If people are kind to me I return their kindness. Oh, sometimes I lend them kindness first, but if they don't return it, it's goodbye. It's not supposed to be that way, God, is it? When you said love one another, you meant be committed to their welfare even if they aren't or they can't be committed to ours. My sister can't love me right now. Maybe, someplace inside her, she wants to, but I see that she can't."
I chew my lip as I lift my eyes from the ground to the great buildings of the college campus before me. Then, looking beyond them, I see the immense blue sky. I hesitate, afraid of my next thought, but then decide it is what I want.
"Lord, teach me to love her. Really love her. But Lord, help me to be wise in my loving. Don't let me think I can meet all her needs. They're too vast. Don't let me think that loving her will cure her. Instead let me be humble, satisfied to help in the small ways you show me. And don't let me expect gratitude. Remind me that it's enough to know that I am pleasing you. Lord, let me rest her present and her future in your hands. Help me to believe that all of this is fitting into your plan and when I forget these things, Lord squeeze my hand."
I adjust my books and start off for class. As I walk, I decide that when I get home I'll call my sister. This time I'll reach out for her.
Saturday, December 3, 2011
Beyond Soho
I was delighted when New York City Voices publisher Ken Steele invited me to write an article about my experience becoming "New York, New York" eligible to secure affordable housing in a supportive, non-invasive, independent, safe living situation. If readers may learn from my story, which is becoming less unique, something positive would come of a very rough period of my life in addition to my new apartment!
Since August 1994 until this past November, I had lived in a two bedroom walkup apartment in the Little Italy section of Soho. It was and up and coming neighborhood; friendly and convenient and fun. The rent was $1,000 a month and I shared the rent and expenses with a roommate. I was unemployed and my mother could no longer help me pay the rent so I had to give up my apartment and go into "the system" including being in a shelter to become "New York, New York" certified in order to qualify to receive a financial subsidy from the state to help me get an apartment.
From November 5, 1997 to May 21, 1998, I lived in what Urban Pathways, a large, emasculating social service bureaucracy, termed a "transitional residence," called the "Traveler's Hotel." This is after I spent one night on two chairs at the Oliveri Center, a drop-in center for indigent women.
At Traveler's Hotel, a midtown SRO-type shelter, across the street from Port Authority, I found that for certain parties, shelters are not free. I paid approximately 50% of my entitlements each month for services I did not wish to utilize, including but not limited to medication monitoring on Traveler's schedule, not necessarily what the psychiatrist prescribed, to have a very small room with a window overlooking a huge red neon sign for an Odd Job store.
Compared to my former address in Soho, I knew I had hit rock bottom, but both sets of my parents are vehemently opposed to enabling me at home. During my stay with Urban Pathways, I kept rationalizing. "at least I am not on the street."
At Traveler's Hotel, there were three overcooked meals a day, including a weekly special of Oxtails. When they were served, I recalled residents sucking every morscle of meat from the circular bones in the makeshift, cramped day room that also had to serve as our small dining room. There were two bathrooms on each floor, virtually no water pressure, hot water on most occasions, one pay phone for 40 people, and an overabundance of rules, vermin, and attitude.
One glorified janitor working the evening shift smoked in non-designated areas where residents could not and tried unsuccessfully to maintain Gestapo-like order with intelligence not being this person's strong suit. Another worker on the night shift would smoke were it was prohibited and would monopolize the television, which was provided for the residents. There were no social workers after 5:00 or 6:00 p.m., so sick residents went unattended after business hours. Even so, regular "support" staff, including case managers, a "housing" specialist, and social workers were more interested in policy and the Jerry Springer Show than our progress. I received no help finding housing from this agency, yet Urban Pathways documented that they were responsible for my permanent housing placement. The truth is I made all the arrangements to locate my current housing program.
Now, I live alone with two cats in supported housing in the Northeast Bronx with a scattered-site program, Inca Housing. I adore my new working class, friendly, relaxed, multiethnic neighborhood. It is convenient to mass transit, nearby the Bronx Zoo and across the street from Van Courtland Park. Mom no longer has to help with the rent, which is substantially subsidized by the NYS Office of Mental Health. I believe I am the most stable I have ever been.
Since August 1994 until this past November, I had lived in a two bedroom walkup apartment in the Little Italy section of Soho. It was and up and coming neighborhood; friendly and convenient and fun. The rent was $1,000 a month and I shared the rent and expenses with a roommate. I was unemployed and my mother could no longer help me pay the rent so I had to give up my apartment and go into "the system" including being in a shelter to become "New York, New York" certified in order to qualify to receive a financial subsidy from the state to help me get an apartment.
From November 5, 1997 to May 21, 1998, I lived in what Urban Pathways, a large, emasculating social service bureaucracy, termed a "transitional residence," called the "Traveler's Hotel." This is after I spent one night on two chairs at the Oliveri Center, a drop-in center for indigent women.
At Traveler's Hotel, a midtown SRO-type shelter, across the street from Port Authority, I found that for certain parties, shelters are not free. I paid approximately 50% of my entitlements each month for services I did not wish to utilize, including but not limited to medication monitoring on Traveler's schedule, not necessarily what the psychiatrist prescribed, to have a very small room with a window overlooking a huge red neon sign for an Odd Job store.
Compared to my former address in Soho, I knew I had hit rock bottom, but both sets of my parents are vehemently opposed to enabling me at home. During my stay with Urban Pathways, I kept rationalizing. "at least I am not on the street."
At Traveler's Hotel, there were three overcooked meals a day, including a weekly special of Oxtails. When they were served, I recalled residents sucking every morscle of meat from the circular bones in the makeshift, cramped day room that also had to serve as our small dining room. There were two bathrooms on each floor, virtually no water pressure, hot water on most occasions, one pay phone for 40 people, and an overabundance of rules, vermin, and attitude.
One glorified janitor working the evening shift smoked in non-designated areas where residents could not and tried unsuccessfully to maintain Gestapo-like order with intelligence not being this person's strong suit. Another worker on the night shift would smoke were it was prohibited and would monopolize the television, which was provided for the residents. There were no social workers after 5:00 or 6:00 p.m., so sick residents went unattended after business hours. Even so, regular "support" staff, including case managers, a "housing" specialist, and social workers were more interested in policy and the Jerry Springer Show than our progress. I received no help finding housing from this agency, yet Urban Pathways documented that they were responsible for my permanent housing placement. The truth is I made all the arrangements to locate my current housing program.
Now, I live alone with two cats in supported housing in the Northeast Bronx with a scattered-site program, Inca Housing. I adore my new working class, friendly, relaxed, multiethnic neighborhood. It is convenient to mass transit, nearby the Bronx Zoo and across the street from Van Courtland Park. Mom no longer has to help with the rent, which is substantially subsidized by the NYS Office of Mental Health. I believe I am the most stable I have ever been.
Friday, December 2, 2011
On Self-Help Books: Gentle But Powerful Changes
I spent last summer following the program of a wonderful self-help workbook—The Artists’ Way: A Spiritual Path to Higher Creativity, by Julia Cameron. This book had been mentioned to me by several gifted, creative people I know, an expert on color and fashion trends, a painter, a young actor, but I am not an artist. How could I presume to read this book?
Finally, a friend lent it to me. It sat on my desk while I circled it from a distance for some time. Then, on a restless and dissatisfied day, with no good mystery books around to read (and feeling a deep sense of boredom with television), I opened it. For the following twelve weeks—the length of the program—I was totally engrossed, energized and delighted.
The Artists’ Way presents, first of all, a sense of spirituality similar to that in a 12-step program. It is a welcoming, nurturing approach, not a set of rules and the sense that at any moment you will break one and be doomed. It demands no agreement with a particular set of beliefs. The message is that if we believe in a loving universe, believe in our own unique creativity and that of others, and understand that there is enough for all-many things are possible.
The book contains chapters with wonderful names like: "Recovering a Sense of Possibility," "Recovering a Sense of Abundance" and "Recovering a Sense of Strength." They are followed by playful and intriguing tasks. These exercises clear away old pain and resentments, and clarify our true dreams and preferences-paving the way for self-expression.
The word "tools" is emphasized, tools that enable the recovery of self and a flow of creative energy. There is a theme throughout the book of playfulness and joy.
One tool is called ‘the morning pages,’ writing three pages, longhand, when you wake up. What do you write? Anything! You just "show up at the page." Addressing the things that are on your mind, your "inner film" will "render you present" in the day to come. Another tool is the "artist date." You take yourself-your inner artist-somewhere that genuinely pleases you, to fill the well with experiences and images. This can-but need not-involve "hoity-toity" art. You can go to a museum, but you can also buy glitter and glue at a 99 cent store, or browse in a toy shop. Ms. Cameron uses the metaphor of a boat out on the water-in the morning pages you send out an S.O.S. On the artist date you turn on your radio so that you can receive answers!
Ms. Cameron also talks about the need for a "believing mirror" when self-doubt creeps in. When you hear yourself saying "You can’t do that-who do you think you are, anyway?" it is crucial to have a trusted voice saying "Of course you can!"
There are lines and phrases from The Artists’ Way that I have found to give both comfort and courage. "I forgive myself for all failures of timing, nerve, and initiative." The point being that it is hard to move forward if you are filled with regret and anger at yourself. "As we open our creative channel to the creator, many gentle but powerful changes are to be expected." My creativity heals myself and others… my work comes to good."
I write about this book because I had not realized before the power of taking a personal self-help journey. Staking out a pathway, faithfully following it along and enriching one’s life, gives a tremendous sense of independence, of setting one’s own direction, and of personal power.
I used to avoid the self-help sections of libraries and bookstores. I thought it would be like studying calculus or physics. I’d learn about what I should do, but couldn’t do. I was more than surprised. I discovered that a well-chosen self-help book-one that fits at a particular moment of your life, one that has warmth and most especially humor—can teach you how to nurture and cherish the self that you are. It can provide the sun and soil and nourishment to make your personal garden grow and flourish.
Finally, a friend lent it to me. It sat on my desk while I circled it from a distance for some time. Then, on a restless and dissatisfied day, with no good mystery books around to read (and feeling a deep sense of boredom with television), I opened it. For the following twelve weeks—the length of the program—I was totally engrossed, energized and delighted.
The Artists’ Way presents, first of all, a sense of spirituality similar to that in a 12-step program. It is a welcoming, nurturing approach, not a set of rules and the sense that at any moment you will break one and be doomed. It demands no agreement with a particular set of beliefs. The message is that if we believe in a loving universe, believe in our own unique creativity and that of others, and understand that there is enough for all-many things are possible.
The book contains chapters with wonderful names like: "Recovering a Sense of Possibility," "Recovering a Sense of Abundance" and "Recovering a Sense of Strength." They are followed by playful and intriguing tasks. These exercises clear away old pain and resentments, and clarify our true dreams and preferences-paving the way for self-expression.
The word "tools" is emphasized, tools that enable the recovery of self and a flow of creative energy. There is a theme throughout the book of playfulness and joy.
One tool is called ‘the morning pages,’ writing three pages, longhand, when you wake up. What do you write? Anything! You just "show up at the page." Addressing the things that are on your mind, your "inner film" will "render you present" in the day to come. Another tool is the "artist date." You take yourself-your inner artist-somewhere that genuinely pleases you, to fill the well with experiences and images. This can-but need not-involve "hoity-toity" art. You can go to a museum, but you can also buy glitter and glue at a 99 cent store, or browse in a toy shop. Ms. Cameron uses the metaphor of a boat out on the water-in the morning pages you send out an S.O.S. On the artist date you turn on your radio so that you can receive answers!
Ms. Cameron also talks about the need for a "believing mirror" when self-doubt creeps in. When you hear yourself saying "You can’t do that-who do you think you are, anyway?" it is crucial to have a trusted voice saying "Of course you can!"
There are lines and phrases from The Artists’ Way that I have found to give both comfort and courage. "I forgive myself for all failures of timing, nerve, and initiative." The point being that it is hard to move forward if you are filled with regret and anger at yourself. "As we open our creative channel to the creator, many gentle but powerful changes are to be expected." My creativity heals myself and others… my work comes to good."
I write about this book because I had not realized before the power of taking a personal self-help journey. Staking out a pathway, faithfully following it along and enriching one’s life, gives a tremendous sense of independence, of setting one’s own direction, and of personal power.
I used to avoid the self-help sections of libraries and bookstores. I thought it would be like studying calculus or physics. I’d learn about what I should do, but couldn’t do. I was more than surprised. I discovered that a well-chosen self-help book-one that fits at a particular moment of your life, one that has warmth and most especially humor—can teach you how to nurture and cherish the self that you are. It can provide the sun and soil and nourishment to make your personal garden grow and flourish.
Thursday, December 1, 2011
Crisis in Albuquerque
The Person-to-Person toll free telephone support program goes beyond the traditional warm line. It gives reminders for all kinds of appointments. Besides my psychiatric appointments, I have had Person-to-Person remind me about dental appointments, appointments for my work and appointments to give testimony about mental health legislation. Person-to-Person balances out the disorientation of my psychiatric condition.
An example of how a Person-to-Person call saved me from a major hospital crisis occurred last summer. I had gone to the National Alliance for the Mentally Ill convention held in Albuquerque, New Mexico in 1997. I had gone through a medication change just before I had left for the convention. The new medication wasn’t working, I was able to immediately put Person-to-Person to work to help me.
I dialed their toll free 800 number, 1-800-376-8282, several times to reach my doctor, and then he spoke with me directly to get me on a medication that worked. Person-to-Person demonstrated to me their skill and dedication during those difficult days in Albuquerque, calling my doctor and then calling me. They enabled us to brainstorm together to find out what medication would work, and we actually discovered what medication was effective through these phone calls. The conference calls from New Mexico to Massachusetts cost me nothing. Imagine, my doctor and I could talk as long as we wanted, sometimes up to a half hour without any charges. My psychiatric condition was stabilized and I was able to deliver two talks at the National Alliance for the Mentally Ill Convention.
Most people, professionals, consumers, and family members, don’t seem to understand the immense disorientation that comes with schizophrenia. A telephone call can go a long way toward orienting and stabilizing people. The Person-to-Person 800 telephone support line represents a new and important step towards putting telecommunications and all the new technologies to work for us, our family members, psychiatrists and others. I have learned this firsthand.
Mental health care has always placed a lot of emphasis on face-to-face contact. This was alright when we were in fully staffed hospitals and outpatient programs. One visit a month to the doctor and therapist doesn’t provide enough support for most of us. The mental health system needs to recognize that people with psychiatric disabilities need a lot more contact with people. Many of us live far away from psychiatrists, therapists and programs. It is easy for us to isolate ourselves and become confused. A telephone call is one less trip for us to make during the week. We can increase contact through several phone calls. Person-to-Person uses the phone to increase our contact with people. And, this support program is also a great adjunct to assist us to be sure we go to our traditional psychiatric and medical appointments.
Person-to-Person is a free comprehensive support service for mental health consumers and their family members. Counselors are specially trained to connect us and our families to services and resources that can help us meet the challenges of recovering from our illnesses.
I always say mental illness makes it easy to get hurt, easy to get confused and easy to get tired. I have made a lot of mistakes because I have been hurt, confused or tired. I told these things to Larry King this summer when I appeared on CNN’s "Larry King Live" to discuss schizophrenia. The Person-to-Person program cuts through these states of hurt, confusion and tiredness and get me where I’m supposed to go and on time. Person to Person is one more tool to keep me well; to keep me going through the day on schedule. Imagine. When you miss appointments it can only increase your confusion.
Many mental health consumers are also working or going to recovery oriented day programs. Person-to-Person is a reminder to encourage people to get up and out of bed to participate in their programs. One more place to go and one more person to meet can be very difficult for the mental health consumer who has many therapeutic visits, Person-to-Person assists in organizing our day.
I need the once a week therapy visit and the calls from Person-to-Person in between. The therapist visit and the calls from Person-to-Person are not exclusive. We, mental health consumers, need both of them. In fact we often may need several calls from Person-to-Person, our therapist and our doctor. I get these calls and they work for me. I highly recommend this telephone support network to everyone.
Person-to-Person has worked for me and continues to work for me today. This is a practical program. Never underestimate the positive influence and importance of a phone call—and especially one from Person-to-Person, a 7-days-a-week toll free support program developed by Janssen Pharmaceutica, the makers of Risperdal (risperidone). This service, however, is available to help anyone who needs information, referral, and resources, regardless of the what medication they take. Test them out yourself: call 800-376-8282.
(Editor’s Note: See the information below about services provided by Person-to-Person. Moe Armstrong is the Director of Consumer Affairs and Family Affairs for Vinfen Corporation in Massachusetts, a company which provides mental health peer education, support and leadership training. A member of the Presidents Committee on Employment of People with Disabilities, he has traveled to the White House, meeting with Mrs. Tipper Gore to discuss mental health disability issues. Armstrong’s experiences as a mental health consumer have been reported on both network television and in major print media. Besides appearing on "Larry King Live," this past July, Armstrong has been featured on ABC National News about his work with support groups. Additionally, he has been the subject of articles in the Boston Globe and the Washington Post. He is a very active member of the National Alliance for the Mentally Ill on the local, state, and national levels and he is a member of many of NAMI’s Advisory Boards and Councils.)
An example of how a Person-to-Person call saved me from a major hospital crisis occurred last summer. I had gone to the National Alliance for the Mentally Ill convention held in Albuquerque, New Mexico in 1997. I had gone through a medication change just before I had left for the convention. The new medication wasn’t working, I was able to immediately put Person-to-Person to work to help me.
I dialed their toll free 800 number, 1-800-376-8282, several times to reach my doctor, and then he spoke with me directly to get me on a medication that worked. Person-to-Person demonstrated to me their skill and dedication during those difficult days in Albuquerque, calling my doctor and then calling me. They enabled us to brainstorm together to find out what medication would work, and we actually discovered what medication was effective through these phone calls. The conference calls from New Mexico to Massachusetts cost me nothing. Imagine, my doctor and I could talk as long as we wanted, sometimes up to a half hour without any charges. My psychiatric condition was stabilized and I was able to deliver two talks at the National Alliance for the Mentally Ill Convention.
Most people, professionals, consumers, and family members, don’t seem to understand the immense disorientation that comes with schizophrenia. A telephone call can go a long way toward orienting and stabilizing people. The Person-to-Person 800 telephone support line represents a new and important step towards putting telecommunications and all the new technologies to work for us, our family members, psychiatrists and others. I have learned this firsthand.
Mental health care has always placed a lot of emphasis on face-to-face contact. This was alright when we were in fully staffed hospitals and outpatient programs. One visit a month to the doctor and therapist doesn’t provide enough support for most of us. The mental health system needs to recognize that people with psychiatric disabilities need a lot more contact with people. Many of us live far away from psychiatrists, therapists and programs. It is easy for us to isolate ourselves and become confused. A telephone call is one less trip for us to make during the week. We can increase contact through several phone calls. Person-to-Person uses the phone to increase our contact with people. And, this support program is also a great adjunct to assist us to be sure we go to our traditional psychiatric and medical appointments.
Person-to-Person is a free comprehensive support service for mental health consumers and their family members. Counselors are specially trained to connect us and our families to services and resources that can help us meet the challenges of recovering from our illnesses.
I always say mental illness makes it easy to get hurt, easy to get confused and easy to get tired. I have made a lot of mistakes because I have been hurt, confused or tired. I told these things to Larry King this summer when I appeared on CNN’s "Larry King Live" to discuss schizophrenia. The Person-to-Person program cuts through these states of hurt, confusion and tiredness and get me where I’m supposed to go and on time. Person to Person is one more tool to keep me well; to keep me going through the day on schedule. Imagine. When you miss appointments it can only increase your confusion.
Many mental health consumers are also working or going to recovery oriented day programs. Person-to-Person is a reminder to encourage people to get up and out of bed to participate in their programs. One more place to go and one more person to meet can be very difficult for the mental health consumer who has many therapeutic visits, Person-to-Person assists in organizing our day.
I need the once a week therapy visit and the calls from Person-to-Person in between. The therapist visit and the calls from Person-to-Person are not exclusive. We, mental health consumers, need both of them. In fact we often may need several calls from Person-to-Person, our therapist and our doctor. I get these calls and they work for me. I highly recommend this telephone support network to everyone.
Person-to-Person has worked for me and continues to work for me today. This is a practical program. Never underestimate the positive influence and importance of a phone call—and especially one from Person-to-Person, a 7-days-a-week toll free support program developed by Janssen Pharmaceutica, the makers of Risperdal (risperidone). This service, however, is available to help anyone who needs information, referral, and resources, regardless of the what medication they take. Test them out yourself: call 800-376-8282.
(Editor’s Note: See the information below about services provided by Person-to-Person. Moe Armstrong is the Director of Consumer Affairs and Family Affairs for Vinfen Corporation in Massachusetts, a company which provides mental health peer education, support and leadership training. A member of the Presidents Committee on Employment of People with Disabilities, he has traveled to the White House, meeting with Mrs. Tipper Gore to discuss mental health disability issues. Armstrong’s experiences as a mental health consumer have been reported on both network television and in major print media. Besides appearing on "Larry King Live," this past July, Armstrong has been featured on ABC National News about his work with support groups. Additionally, he has been the subject of articles in the Boston Globe and the Washington Post. He is a very active member of the National Alliance for the Mentally Ill on the local, state, and national levels and he is a member of many of NAMI’s Advisory Boards and Councils.)
Monday, November 28, 2011
Recovery By Design
I always knew that I would be an artist -- long before I knew I had an illness called manic depression. Since I was also enthusiastic enough and outgoing, it was difficult for me to differentiate between a manic episode and a creative one.
While I was fortunate to have been diagnosed properly, my attention to my illness and my medication was short lived and resulted in a series of disasters. It's impossible for me to determine when my mania began, but I was certainly aware of my first depression...an event that altered my life shortly after the age of 29. The experience left me paralyzed. I was unable to cope with even the simple tasks of living. It took a long time for me to find out what was happening to me. During the months and months of not knowing, I spent most of my days in bed, unable to communicate with anyone.
Mental illness caused me to lose my husband, children, my upper east side apartment and its contents, and, eventually, found me living with my aging mother. Within days after arriving at her apartment in Queens, I was in a deep depression which lasted for more than three years. The downward swing of my mood was paralyzing. I was unable to have a clear thought. I spent every day reading the same newspaper over and over again. My mother, always in denial, did little to help, and was probably battling her own demons.
A writer named Gloria Hochman (who wrote Patty Duke's account of her illness) convinced me to go for immediate help at any local hospital or clinic. I did. Months later, on medication and working with a mental health professional, I began to feel strong enough to think about working again. My portfolio was one of the few things I was able to salvage from my former life and I felt it was contemporary enough for me to compete for a position. Within a short period of time, I found a wonderful job as a designer at a very good salary. After sixth months at my new job, my mother became very ill and I began to spiral into a manic phase which I wasn't clear enough about to address. Her death and my mania were concurrent and it wasn't long before I was an involuntary patient in the psychiatric ward at Elmhurst Hospital. That period was followed by two additional hospitalizations, the last of which almost put me into a long term facility.
The Social Services "reward" after three consecutive hospitalizations, within a one year period, is an Intensive Case Manager (ICM). Lou Carvajal, my ICM who still visits with me each week, a family member whose very special, and friends took me from the possibility of living in an adult home to sharing a spacious, beautiful apartment.
The idea of starting my own business was a result of my inability to get a job as a designer, not because I was lacking in ability or experience. Not because I lacked the credentials, but because I was "over qualified." What that means in the real world "your too old to be looking for a job." Starting my own business would give me, at least, the possibility of a career. I knew it would be necessary to return to school, learn to use a computer, and find enough money for the necessary equipment. It was also time to apply to VESID.
It took more than a year before my request for equipment was approved by VESID. When my computer was delivered, I sat at the keyboard and monitor and explored every program that was available to me and preparing to go after some business.
I strongly encourage people with mental illness to pursue their dreams of living a productive life. A great deal of moral, emotional and even financial support is available through organizations such as VESID and, particularity, INCube, Inc. since it is a 100% consumer-run and the staff is able to consider your ideas and your limitations.
I've had a very turbulent life and would have preferred to read about most of the events than to have had the experience. Yet, I remain very optimistic about the future and watching the growth of my business. Being an entrepreneur is risky, but then...so is being alive.
While I was fortunate to have been diagnosed properly, my attention to my illness and my medication was short lived and resulted in a series of disasters. It's impossible for me to determine when my mania began, but I was certainly aware of my first depression...an event that altered my life shortly after the age of 29. The experience left me paralyzed. I was unable to cope with even the simple tasks of living. It took a long time for me to find out what was happening to me. During the months and months of not knowing, I spent most of my days in bed, unable to communicate with anyone.
Mental illness caused me to lose my husband, children, my upper east side apartment and its contents, and, eventually, found me living with my aging mother. Within days after arriving at her apartment in Queens, I was in a deep depression which lasted for more than three years. The downward swing of my mood was paralyzing. I was unable to have a clear thought. I spent every day reading the same newspaper over and over again. My mother, always in denial, did little to help, and was probably battling her own demons.
A writer named Gloria Hochman (who wrote Patty Duke's account of her illness) convinced me to go for immediate help at any local hospital or clinic. I did. Months later, on medication and working with a mental health professional, I began to feel strong enough to think about working again. My portfolio was one of the few things I was able to salvage from my former life and I felt it was contemporary enough for me to compete for a position. Within a short period of time, I found a wonderful job as a designer at a very good salary. After sixth months at my new job, my mother became very ill and I began to spiral into a manic phase which I wasn't clear enough about to address. Her death and my mania were concurrent and it wasn't long before I was an involuntary patient in the psychiatric ward at Elmhurst Hospital. That period was followed by two additional hospitalizations, the last of which almost put me into a long term facility.
The Social Services "reward" after three consecutive hospitalizations, within a one year period, is an Intensive Case Manager (ICM). Lou Carvajal, my ICM who still visits with me each week, a family member whose very special, and friends took me from the possibility of living in an adult home to sharing a spacious, beautiful apartment.
The idea of starting my own business was a result of my inability to get a job as a designer, not because I was lacking in ability or experience. Not because I lacked the credentials, but because I was "over qualified." What that means in the real world "your too old to be looking for a job." Starting my own business would give me, at least, the possibility of a career. I knew it would be necessary to return to school, learn to use a computer, and find enough money for the necessary equipment. It was also time to apply to VESID.
It took more than a year before my request for equipment was approved by VESID. When my computer was delivered, I sat at the keyboard and monitor and explored every program that was available to me and preparing to go after some business.
I strongly encourage people with mental illness to pursue their dreams of living a productive life. A great deal of moral, emotional and even financial support is available through organizations such as VESID and, particularity, INCube, Inc. since it is a 100% consumer-run and the staff is able to consider your ideas and your limitations.
I've had a very turbulent life and would have preferred to read about most of the events than to have had the experience. Yet, I remain very optimistic about the future and watching the growth of my business. Being an entrepreneur is risky, but then...so is being alive.
Saturday, November 26, 2011
Providing A Future
One of the most troubling questions the parent of a mental health consumer faces is how to provide for the child after they are gone. Fortunately the law provides many effective instruments to deal with these problems. These instruments were the theme of NAMI-NYC Metro’s June 13th meeting, which was held at the Community Church. There were three speakers at the meeting: attorneys Robert Freeman and Martin Petroff and a volunteer with personal experience Celeste Wallin.
Freeman spoke on how to establish a trust for a mental health consumer. Under a trust arrangement, property is given to a trustee for the benefit of a named party. This allows the recipient to receive income from the trust while the property remains in the hands of the trustee. One type of trust called a Supplemental Needs Trust can be created so that a person’s income will not generally count in determining eligibility for government benefits.
Under a Supplemental Needs Trust a trustee under direction pays out income for the disabled person to supplement their government benefits. The theory is benefits pay for food and shelter while the trust pays for extras such as a television set, a computer or even a vacation. The trust document can spell out what the income can be used for.
There are various types of trusts. A Living Trust is created during the lifetime of the maker of the trust while a Testamentary Trust is established by a will. A Discretionary Trust is set up to protect the beneficiary. It allows the trustee at his discretion to cut off funds to the beneficiary. This is especially valuable for a mental health consumer who is generally stable but who can at times decompensate. During these periods the trustee can cut off funds to the consumer who does not have good judgment.
Dealing with decompensation is a concern of Wallin who is a trustee of a Living Trust established by her father for her siblings. All the children with the exception of Wallin suffer from bipolar disease. She administers the trust in consultation with her siblings but Wallin has the final word.
If a properly drawn trust can provide income for the mental health consumer there are legal documents that can protect the person if they become incompetent to manage their own affairs. Petroff discussed Advance Directives documents where a person states what kind of medical treatment they want to have when they become incompetent to manage their own affairs. There is a psychiatric Advance Directive but it is very new and it is not clear how the courts will honor it in issues involving involuntary treatment and commitment. As part of the Advance Directive a healthcare proxy should be created as well. The proxy or agent is authorized to make healthcare decisions when the person is incompetent. Parents may want to also create a power of attorney for a consumer. Under a power of attorney, an agent is created to manage financial affairs.
After the meeting, a lively question period was held. There, the speakers stressed the importance for parents to have a plan to protect the consumer. It is wise to consult a lawyer in drawing up the plans. The meeting provided valuable hope to parents and other relatives of mental health consumers. They now have solid information to plan for their child’s future.
Freeman spoke on how to establish a trust for a mental health consumer. Under a trust arrangement, property is given to a trustee for the benefit of a named party. This allows the recipient to receive income from the trust while the property remains in the hands of the trustee. One type of trust called a Supplemental Needs Trust can be created so that a person’s income will not generally count in determining eligibility for government benefits.
Under a Supplemental Needs Trust a trustee under direction pays out income for the disabled person to supplement their government benefits. The theory is benefits pay for food and shelter while the trust pays for extras such as a television set, a computer or even a vacation. The trust document can spell out what the income can be used for.
There are various types of trusts. A Living Trust is created during the lifetime of the maker of the trust while a Testamentary Trust is established by a will. A Discretionary Trust is set up to protect the beneficiary. It allows the trustee at his discretion to cut off funds to the beneficiary. This is especially valuable for a mental health consumer who is generally stable but who can at times decompensate. During these periods the trustee can cut off funds to the consumer who does not have good judgment.
Dealing with decompensation is a concern of Wallin who is a trustee of a Living Trust established by her father for her siblings. All the children with the exception of Wallin suffer from bipolar disease. She administers the trust in consultation with her siblings but Wallin has the final word.
If a properly drawn trust can provide income for the mental health consumer there are legal documents that can protect the person if they become incompetent to manage their own affairs. Petroff discussed Advance Directives documents where a person states what kind of medical treatment they want to have when they become incompetent to manage their own affairs. There is a psychiatric Advance Directive but it is very new and it is not clear how the courts will honor it in issues involving involuntary treatment and commitment. As part of the Advance Directive a healthcare proxy should be created as well. The proxy or agent is authorized to make healthcare decisions when the person is incompetent. Parents may want to also create a power of attorney for a consumer. Under a power of attorney, an agent is created to manage financial affairs.
After the meeting, a lively question period was held. There, the speakers stressed the importance for parents to have a plan to protect the consumer. It is wise to consult a lawyer in drawing up the plans. The meeting provided valuable hope to parents and other relatives of mental health consumers. They now have solid information to plan for their child’s future.
Saturday, November 19, 2011
Friendship is the Best Medicine
Every mental health consumer knows the loneliness and isolation that can accompany our illnesses. We often feel out of touch with the rest of the world and find it difficult to make friends. The Jewish Board of Family and Children’s Services (JBFCS) offers a program, Compeer, that can provide a friend to a lonely consumer. Compeer matches volunteers one-to-one with mentally ill adults who are in need of a friend.
Compeer was developed in 1973, in Rochester, New York to address the social isolation that is so common among consumers. This program matched one member of the community with another member of the community, both of whom volunteered their time, both of whom were interested in developing a friendship, both of whom had something to give, but one of whom had a history of mental illness. Over time, the Compeer program has grown. There are now 120 Compeer programs internationally, including 26 in New York State.
Compeer has grown and spread all over the world because it works. Participants report higher self esteem and an improved sense of security. According to Lilly Tempelsman, JBFCS’s Compeer Program Coordinator, results of a yearly survey of program participants show that the rate of rehospitalization is decreased tremendously. Ms. Tempelsman often says, "Friendship is powerful medicine."
If you need a friend and would like to meet one through Compeer, your therapist must contact Ms. Tempelsman of JBFCS and make a referral. The therapist then receives an application to fill out and return to JBFCS. The application asks the therapist to describe the consumer’s background and interests. The therapist will meet the potential volunteer. The therapist is expected to communicate periodically with the volunteer about how the relationship is progresssing.
If you want to volunteer, you can contact Ms. Tempelsman of JBFCS at (212)632-4684. You will receive an application package. The application asks about one’s background and interest. One must also provide three written references. If you are a consumer and are interested in volunteering, one of your references must be from your therapist. Volunteers are then interviewed in depth and have an opportunity to ask questions. Volunteers also receive training from JBFCS. A match is then made between a volunteer and a client. The matches are same sex and are based on factors such as geographic location, age, interests and hobbies.
The Compeer volunteer makes a one year commitment to spend time with the client one to two hours a week. They might go out for coffee, to a movie, or take a walk in the park. Compeer volunteers serve as an adjunct to therapy. They are an additional support system for the client. The volunteer consults with the client’s therapist and receives ongoing support from the JBFCS Compeer Program Coordinator.
Compeer was developed in 1973, in Rochester, New York to address the social isolation that is so common among consumers. This program matched one member of the community with another member of the community, both of whom volunteered their time, both of whom were interested in developing a friendship, both of whom had something to give, but one of whom had a history of mental illness. Over time, the Compeer program has grown. There are now 120 Compeer programs internationally, including 26 in New York State.
Compeer has grown and spread all over the world because it works. Participants report higher self esteem and an improved sense of security. According to Lilly Tempelsman, JBFCS’s Compeer Program Coordinator, results of a yearly survey of program participants show that the rate of rehospitalization is decreased tremendously. Ms. Tempelsman often says, "Friendship is powerful medicine."
If you need a friend and would like to meet one through Compeer, your therapist must contact Ms. Tempelsman of JBFCS and make a referral. The therapist then receives an application to fill out and return to JBFCS. The application asks the therapist to describe the consumer’s background and interests. The therapist will meet the potential volunteer. The therapist is expected to communicate periodically with the volunteer about how the relationship is progresssing.
If you want to volunteer, you can contact Ms. Tempelsman of JBFCS at (212)632-4684. You will receive an application package. The application asks about one’s background and interest. One must also provide three written references. If you are a consumer and are interested in volunteering, one of your references must be from your therapist. Volunteers are then interviewed in depth and have an opportunity to ask questions. Volunteers also receive training from JBFCS. A match is then made between a volunteer and a client. The matches are same sex and are based on factors such as geographic location, age, interests and hobbies.
The Compeer volunteer makes a one year commitment to spend time with the client one to two hours a week. They might go out for coffee, to a movie, or take a walk in the park. Compeer volunteers serve as an adjunct to therapy. They are an additional support system for the client. The volunteer consults with the client’s therapist and receives ongoing support from the JBFCS Compeer Program Coordinator.
Friday, November 18, 2011
Through the Eyes of a Stranger - Part 2
INSTITUTIONAL STIGMA
Institutional stigma is placed on us by (usually) well meaning mental health professionals and adult home centers.
First, the adult home. I have been in an adult home for approximately two years and a half at the time of the publishing of this essay. Let me tell you that these facilities foster custodial care to the max! All of your needs are handled by the facility for you and there is no encouragement for change. Example: based on income, I have determined that 87% of ny money goes toward my care while the rest is returned to me for my monthly allowance. This 13% is just enough to get by let alone save for the future.
To further emphasize the situation, in January of last year Social Security increased benefits by 2.9%, while my rent was increased by 5.8% and my monthly allowance was decreased by 20%. This, to me, is one of the strongest forms of stigma that we can place on an individual--affecting the financial ability of an individual to survive. It is a subtle, but powerful form of control and disempowerment for residents of these homes.
Professional stigma (you knew we'd get to that!) is centered on the beliefs that professionals have about our recovery. Based on personal experience through years of private and public therapy, I have determined that many professionals have been trained in an old model of treatment (which goes something like this) - "you have an illness, take your medication, let's talk about your problems, and we'll see you next month." They may not have been exposed directly to the new methods of treatment, such as self-help, until they have been in practice for many years.
The level and degree of our illness provides professionals with a base toward which expectations and goals can be attached. The unfortunate thing is that these expectations and goals are generally theirs and not our own. The two expectations and set of goals may be quite different. Each small step may be a reached goal for us, yet seem unimportant to a provider more attuned to their wishes for us. Again, we are brought back to self-stigma; as we fail to reach another's goal for us, we feel as if we have failed ourselves.
SOCIAL STIGMA
How many times have you read stories in our local papers with headlines like "Psychiatric Patient On Rampage!" or the like. How many times have you heard, "Oh, this is Uncle Mike, he has an emotional problem." Society, family, and friends tend to shun those with mental illness, mocking us, criticizing us, or laughing at us.
From childhood, we are teased and abused in some manner until finally we cannot take it any more. Then we seek help (if we are aware enough)--but from whom?--the same folks who at one time may have been among the laughters and mockers! It's hard to get passed this "Us, them" thing.
Society has made all of us believe that in order to be in the late Howie the Harp's time phrase, "chronically normal," we are not to express feelings or emotions openly and in public. What happened to friendliness such as "good morning!," or "hello, how are you?" Are these statements of a past society where we were allowed to show respect to one another?
Today, as in years past, divulgence of being treated for a mental illness is tantamount to self-destruction. Although things are changing (slowly), the direction of a national campaign should be toward anti-stigma of the mentally ill, with parity for all illnesses in society.
FINAL REMARKS
With new models of recovery, utilizing self-help, leaders should be identified through the media, educational systems and in other social arena's throughout our social and institutional systems. It is up to the "higher functioning" mentally ill to open the doors for future recovering patients of mental illness. Shatter the myths and show that mental illness is just that, an illness that can be diagnosed and treated.
Educational systems should utilize speakers to train students of mental hygiene that there are new methods of recovery. Teach the older tried and true methods combined with new techniques, because you never know which combinations will work best for individual clients, as we are, of course, all individuals!
Courtenay Harding, the researcher on mental illness stigma I noted in part one of this essay, discussed her research on National Public Radio's program, "Morning Edition." The program received calls from people who identified themselves as physicians, nurses, lawyers, engineers, and high school teachers. They uniformly had said, "I once had schizophrenia, but I don't tell anyone about this event because of the stigma."
The following labels were given to me by family, professionals, educational institutions and businesses. My labels are: Michael G. Spennato, teacher, administrator, paranoid schizophrenic, sufferer of anxiety disorder and major depression, child of God--pick one. I chose child of God!
In the words of Eleanor Roosevelt, "No one can insult you without your permission." Stigma is, in the final analysis (so to speak) most often self-imposed. Our beliefs in ourselves or lack of will produce the results of society's and the institution's expectations that we allow to happen. We need to give ourselves a chance to grow and develop into the meaningful person we were meant to be. Take medication if necessary, similar to the diabetic. Think of ourselves. Believe in a God. Speak and cry out, "I am Human."
I would like to take this opportunity to thank Debi Davis, Sally Zinman, the late Howie the Harp, and Ed Knight for their self-help theories. Also, Joanne Forbes, Marion Schaal, Fred Mednick, Dorene Dinkle and Roberta Zarr, for their support of my ideas and South Beach Psychiatric Center for the opportunities they have provided me.
Institutional stigma is placed on us by (usually) well meaning mental health professionals and adult home centers.
First, the adult home. I have been in an adult home for approximately two years and a half at the time of the publishing of this essay. Let me tell you that these facilities foster custodial care to the max! All of your needs are handled by the facility for you and there is no encouragement for change. Example: based on income, I have determined that 87% of ny money goes toward my care while the rest is returned to me for my monthly allowance. This 13% is just enough to get by let alone save for the future.
To further emphasize the situation, in January of last year Social Security increased benefits by 2.9%, while my rent was increased by 5.8% and my monthly allowance was decreased by 20%. This, to me, is one of the strongest forms of stigma that we can place on an individual--affecting the financial ability of an individual to survive. It is a subtle, but powerful form of control and disempowerment for residents of these homes.
Professional stigma (you knew we'd get to that!) is centered on the beliefs that professionals have about our recovery. Based on personal experience through years of private and public therapy, I have determined that many professionals have been trained in an old model of treatment (which goes something like this) - "you have an illness, take your medication, let's talk about your problems, and we'll see you next month." They may not have been exposed directly to the new methods of treatment, such as self-help, until they have been in practice for many years.
The level and degree of our illness provides professionals with a base toward which expectations and goals can be attached. The unfortunate thing is that these expectations and goals are generally theirs and not our own. The two expectations and set of goals may be quite different. Each small step may be a reached goal for us, yet seem unimportant to a provider more attuned to their wishes for us. Again, we are brought back to self-stigma; as we fail to reach another's goal for us, we feel as if we have failed ourselves.
SOCIAL STIGMA
How many times have you read stories in our local papers with headlines like "Psychiatric Patient On Rampage!" or the like. How many times have you heard, "Oh, this is Uncle Mike, he has an emotional problem." Society, family, and friends tend to shun those with mental illness, mocking us, criticizing us, or laughing at us.
From childhood, we are teased and abused in some manner until finally we cannot take it any more. Then we seek help (if we are aware enough)--but from whom?--the same folks who at one time may have been among the laughters and mockers! It's hard to get passed this "Us, them" thing.
Society has made all of us believe that in order to be in the late Howie the Harp's time phrase, "chronically normal," we are not to express feelings or emotions openly and in public. What happened to friendliness such as "good morning!," or "hello, how are you?" Are these statements of a past society where we were allowed to show respect to one another?
Today, as in years past, divulgence of being treated for a mental illness is tantamount to self-destruction. Although things are changing (slowly), the direction of a national campaign should be toward anti-stigma of the mentally ill, with parity for all illnesses in society.
FINAL REMARKS
With new models of recovery, utilizing self-help, leaders should be identified through the media, educational systems and in other social arena's throughout our social and institutional systems. It is up to the "higher functioning" mentally ill to open the doors for future recovering patients of mental illness. Shatter the myths and show that mental illness is just that, an illness that can be diagnosed and treated.
Educational systems should utilize speakers to train students of mental hygiene that there are new methods of recovery. Teach the older tried and true methods combined with new techniques, because you never know which combinations will work best for individual clients, as we are, of course, all individuals!
Courtenay Harding, the researcher on mental illness stigma I noted in part one of this essay, discussed her research on National Public Radio's program, "Morning Edition." The program received calls from people who identified themselves as physicians, nurses, lawyers, engineers, and high school teachers. They uniformly had said, "I once had schizophrenia, but I don't tell anyone about this event because of the stigma."
The following labels were given to me by family, professionals, educational institutions and businesses. My labels are: Michael G. Spennato, teacher, administrator, paranoid schizophrenic, sufferer of anxiety disorder and major depression, child of God--pick one. I chose child of God!
In the words of Eleanor Roosevelt, "No one can insult you without your permission." Stigma is, in the final analysis (so to speak) most often self-imposed. Our beliefs in ourselves or lack of will produce the results of society's and the institution's expectations that we allow to happen. We need to give ourselves a chance to grow and develop into the meaningful person we were meant to be. Take medication if necessary, similar to the diabetic. Think of ourselves. Believe in a God. Speak and cry out, "I am Human."
I would like to take this opportunity to thank Debi Davis, Sally Zinman, the late Howie the Harp, and Ed Knight for their self-help theories. Also, Joanne Forbes, Marion Schaal, Fred Mednick, Dorene Dinkle and Roberta Zarr, for their support of my ideas and South Beach Psychiatric Center for the opportunities they have provided me.
Thursday, November 17, 2011
Living Well: An Educated Consumer
For most of us, living on a fixed income of SSI or SSD, the thought of "living well" has become an unattainable fantasy. It really doesn’t have to be that way. Some of us make grave mistakes in our spending habits and find ourselves with cheap clothing and poorly constructed furniture in a Spartan environment. It really doesn’t have to be that way. There’s no reason why you can’t live the rich man’s (or woman’s) dream. You can wear the same clothing that you see in the leading fashion magazines and live in an "Architectural Digest" style apartment. It just takes a bit of ingenuity and effort on your part. Instead of planning a trip to the mall or an inexpensive clothing store, take yourself to the Salvation Army or your neighborhood Goodwill store. (Check the yellow pages of your telephone book under "Thrift Shops" for the addresses). On the racks you’ll find both the fine and the flimsy of everything. Look at the labels and you will probably see names like Calvin Klein, Anne Klein, Norma Kamali, Gucci, Georgio Armani, along with lesser brand names which you will learn to ignore. These fine labels would cost hundreds of dollars at stores like Saks, but you can buy them for as little as $7.99! Teach yourself about fabrics and workmanship and you’ll know what to select.
Most thrift shops sell furniture and housewares, as well. Spend some time looking at magazines like Better Homes and Gardens or, even, Architectural Digest to get an idea of how you’d like to furnish your room or your apartment. (Second hand furniture shops and flea markets are another resource). You may be lucky on your first visit, but don’t give up if you don’t find anything to your liking on the first trip. Deliveries to these stores are made on a daily basis and sooner or later you’ll find something that’s still in great condition for very little money. Don’t forget things like pillows for the sofa and curtains for the windows! You’ll find all of that, as well. Please remember to inspect everything carefully as all merchandise is sold as is and there are no credits or returns in most places. I promise you’ll have a lot of fun on your "hunt" and find yourself surrounded with things you never thought you’d ever own.
Most thrift shops sell furniture and housewares, as well. Spend some time looking at magazines like Better Homes and Gardens or, even, Architectural Digest to get an idea of how you’d like to furnish your room or your apartment. (Second hand furniture shops and flea markets are another resource). You may be lucky on your first visit, but don’t give up if you don’t find anything to your liking on the first trip. Deliveries to these stores are made on a daily basis and sooner or later you’ll find something that’s still in great condition for very little money. Don’t forget things like pillows for the sofa and curtains for the windows! You’ll find all of that, as well. Please remember to inspect everything carefully as all merchandise is sold as is and there are no credits or returns in most places. I promise you’ll have a lot of fun on your "hunt" and find yourself surrounded with things you never thought you’d ever own.
Thursday, November 10, 2011
Coordinated Children's Services Initiative
Imagine yourself as the parent of a child who has just been diagnosed as ADHD or Bipolar. Imagine having never heard these terms before. Imagine the administration for Children’s Services investigative team coming to your home to inquire about your ability to parent your child. Imagine the Board of Education telling you that your child cannot handle the “regular education” setting and needs to be evaluated for special education.
Now imagine that all of these things are happening at the same time. How might you feel? Confused. Intimidated. Frustrated. Angry. Scared. It is important to realize that this is happening to many children and families throughout New York City. In this type of situation, both communication and collaboration between child-serving systems must be encouraged.
There is a new and exciting collaboration between the Manhattan Parent Resource Center and the Coordinated Children’s Services Initiative that is working hard to decrease the negative experiences families have with child-serving systems. It is the mission of both the Coordinated Children’s Services Initiative and the Manhattan Parent Resource Center to work closely with families who are involved with multiple systems and are in need of assistance and/or encouragement while navigating these large child-serving groups. Through advocacy and a Manhattan Family Network (strength-based assessment) families are reporting that their situation becomes more clear and they become motivated to take steps towards positive change for their families.
Let us look at an example. A fifteen-year-old has behavioral outbursts at school. He is constantly in fights and disruptive in class. One day a teacher grabs his arm to redirect him. The child reacts violently striking the teacher. The teacher presses charges and the child is expelled from school. The child’s mother is worried, but is not sure what to do or where to turn. She is working full-time and is under a lot of pressure. She is a single parent and she must not lose her job. After the assault charges are filed, the Department of Juvenile Justice becomes involved with the case. The child must do community service and go to counseling to focus on anger management. In addition, now that the case has received so much attention, the Administration for Children’s Services (ACS) has noticed that the child missed numerous days of school. ACS cites the child’s mother for educational neglect. This increases the mother’s stress and she is feeling frustrated and extremely overwhelmed.
This is a common scenario that involves many systems. Let’s see how it involves all social systems. We must first consider or assess the psychological make-up of the child and determine at what point we need to make a proper intervention. The parent contacts the Parent Resource Center (a center that prides itself in educating parents on their rights and current child-serving policies and supporting parents as they navigate systems) and says, “I can’t take it anymore. My son is out of control. He was kicked out of school. Now they are trying to blame me for it. I didn’t do anything wrong. He hit the teacher and the Juvenile Justice system is involved now. I don’t want my son to be locked up. What should I do?”
After the parent’s acute anxieties are quelled, the parent advocate invites them to a support group at the center and redirects them to a new initiative in Manhattan known as the Coordinated Children’s Services Initiative (CCSI). This is a process that deals with families whose children are involved with multiple macro systems such as the Board of Education, Juvenile Justice, Mental Health and/or Child Welfare. Once the CCSI team is involved, a Family Network is developed to ensure that all systems continue to share information in a constructive manner to reach the needs that the family has identified themselves. Network is a process that is strength-based and family driven. Network also utilizes the wrap-around process to create a “support circle” for the family. When a family begins the Network process, a parent advocate becomes involved. The parent advocate acts as a liaison for the parent and child in helping them navigate the various systems with which they are involved.
Through contacting the Mental Health Association of New York City, Inc. and the Manhattan Parent Resource Center or the Coordinated Children’s Services Initiative, families can begin to work with professionals together to strengthen their family and keep their child well. We are excited about the work we are doing at the Mental Health Association of New York City, Inc. Similar collaborations exist in the other boroughs of New York City. Contact names are as follows:
* Manhattan—CCSI Coordinator Michelle Munson, 212-254-0333 ext.240; Manhattan Parent Resource Center—Terril Pile
* Brooklyn—CCSI Coordinator Dolores Tibbets, 212-254-0333 ext.220; Brooklyn Parent Resource Center, 718-604-8800—Maxine Barnett
* Bronx—CCSI Coordinator Annabella Escobar, 212-254-0333 ext.250; Bronx Parent Resource Center, 718-731-4673—Bernadine Meeks
* Queens—CCSI Coordinator Michelle Munson, 212-254-0333 ext.240; Queens Parent Resource Center, 718-526-0722 ext.235—Ceceile Green
* Plans for the initiative are being developed in Staten Island
Now imagine that all of these things are happening at the same time. How might you feel? Confused. Intimidated. Frustrated. Angry. Scared. It is important to realize that this is happening to many children and families throughout New York City. In this type of situation, both communication and collaboration between child-serving systems must be encouraged.
There is a new and exciting collaboration between the Manhattan Parent Resource Center and the Coordinated Children’s Services Initiative that is working hard to decrease the negative experiences families have with child-serving systems. It is the mission of both the Coordinated Children’s Services Initiative and the Manhattan Parent Resource Center to work closely with families who are involved with multiple systems and are in need of assistance and/or encouragement while navigating these large child-serving groups. Through advocacy and a Manhattan Family Network (strength-based assessment) families are reporting that their situation becomes more clear and they become motivated to take steps towards positive change for their families.
Let us look at an example. A fifteen-year-old has behavioral outbursts at school. He is constantly in fights and disruptive in class. One day a teacher grabs his arm to redirect him. The child reacts violently striking the teacher. The teacher presses charges and the child is expelled from school. The child’s mother is worried, but is not sure what to do or where to turn. She is working full-time and is under a lot of pressure. She is a single parent and she must not lose her job. After the assault charges are filed, the Department of Juvenile Justice becomes involved with the case. The child must do community service and go to counseling to focus on anger management. In addition, now that the case has received so much attention, the Administration for Children’s Services (ACS) has noticed that the child missed numerous days of school. ACS cites the child’s mother for educational neglect. This increases the mother’s stress and she is feeling frustrated and extremely overwhelmed.
This is a common scenario that involves many systems. Let’s see how it involves all social systems. We must first consider or assess the psychological make-up of the child and determine at what point we need to make a proper intervention. The parent contacts the Parent Resource Center (a center that prides itself in educating parents on their rights and current child-serving policies and supporting parents as they navigate systems) and says, “I can’t take it anymore. My son is out of control. He was kicked out of school. Now they are trying to blame me for it. I didn’t do anything wrong. He hit the teacher and the Juvenile Justice system is involved now. I don’t want my son to be locked up. What should I do?”
After the parent’s acute anxieties are quelled, the parent advocate invites them to a support group at the center and redirects them to a new initiative in Manhattan known as the Coordinated Children’s Services Initiative (CCSI). This is a process that deals with families whose children are involved with multiple macro systems such as the Board of Education, Juvenile Justice, Mental Health and/or Child Welfare. Once the CCSI team is involved, a Family Network is developed to ensure that all systems continue to share information in a constructive manner to reach the needs that the family has identified themselves. Network is a process that is strength-based and family driven. Network also utilizes the wrap-around process to create a “support circle” for the family. When a family begins the Network process, a parent advocate becomes involved. The parent advocate acts as a liaison for the parent and child in helping them navigate the various systems with which they are involved.
Through contacting the Mental Health Association of New York City, Inc. and the Manhattan Parent Resource Center or the Coordinated Children’s Services Initiative, families can begin to work with professionals together to strengthen their family and keep their child well. We are excited about the work we are doing at the Mental Health Association of New York City, Inc. Similar collaborations exist in the other boroughs of New York City. Contact names are as follows:
* Manhattan—CCSI Coordinator Michelle Munson, 212-254-0333 ext.240; Manhattan Parent Resource Center—Terril Pile
* Brooklyn—CCSI Coordinator Dolores Tibbets, 212-254-0333 ext.220; Brooklyn Parent Resource Center, 718-604-8800—Maxine Barnett
* Bronx—CCSI Coordinator Annabella Escobar, 212-254-0333 ext.250; Bronx Parent Resource Center, 718-731-4673—Bernadine Meeks
* Queens—CCSI Coordinator Michelle Munson, 212-254-0333 ext.240; Queens Parent Resource Center, 718-526-0722 ext.235—Ceceile Green
* Plans for the initiative are being developed in Staten Island
Tuesday, November 8, 2011
Mother of Suicide Victim Speaks Out
Susan Harrington related the painful details of the death of her son Barrett at the recent press conference in Albany. Barrett was diagnosed with a serious mental illness during a recent incarceration at Riker’s Island for drug-dependent related crimes. He was released from Riker’s without a comprehensive treatment plan for his mental health needs, save for a three-day supply of antipsychotic medications. Barrett, because he did not have Medicaid eligibility, applied for Medicaid benefits after his release and had to endure long waits in hospital emergency rooms and pharmacies just to renew a five-day supply of medication. Despite these limited measures, his mental health deteriorated and he attempted suicide. He was admitted to a psychiatric inpatient unit only at his mother’s insistence and was discharged two weeks later without a comprehensive treatment plan. Left without necessary supports and services, he returned to drug use. He committed suicide shortly afterward at age 24. Five days after his suicide, Mrs. Harrington was notified that her son’s Medicaid application had been approved.
Ms. Harrington called for the passage of legislation to provide for 90 days of presumptive Medicaid eligibility for individuals leaving hospitals and correctional facilities. "I believe my son’s tragic death might well have been avoided had he been able to get the help he so badly needed and sought repeatedly," she said. "State government must act quickly to allow people stuck in the revolving door of the mental heath and correctional systems to promptly get the medication and services they need when returning to the community."
Ms. Harrington was joined by a large coalition of mental health advocates supporting reform. Presumptive Medicaid Eligibility will go beyond the Medication Grant program included in "Kendra’s Law" by providing access to all psychiatric services including medication, housing, comprehensive case management, day treatment and intensive rehabilitation programs. An individual will be able to receive services under Medicaid while an eligibility determination is being made—a process that routinely takes 60 to 90 days.
"A Medication Grants program with limited benefits and no guarantee that it will be available in each community of the state makes no sense from either a clinical or government efficiency standpoint," according to Susan Batkin, Director of the Mental Health Project at the Urban Justice Center in New York City, and coordinator for the Presumptive Medicaid Eligibility Coalition. "The existing Medicaid program is already available in all parts of the State, and adding additional state bureaucrats and hiring benefits managers to administer this new system merely diverts resources away from the patient into administration."
Harvey Rosenthal, Executive Director of the New York Association of Psychiatric Rehabilitation Services (NYAPRS), and chair of the Mental Health Action Network, added, "People in crisis need much more than just a pill. Presumptive Medicaid Eligibility will instead offer access to the full range of Medicaid-funded housing, treatment and support services we know are necessary to fully restore these persons to productive community life."
Ms. Harrington called for the passage of legislation to provide for 90 days of presumptive Medicaid eligibility for individuals leaving hospitals and correctional facilities. "I believe my son’s tragic death might well have been avoided had he been able to get the help he so badly needed and sought repeatedly," she said. "State government must act quickly to allow people stuck in the revolving door of the mental heath and correctional systems to promptly get the medication and services they need when returning to the community."
Ms. Harrington was joined by a large coalition of mental health advocates supporting reform. Presumptive Medicaid Eligibility will go beyond the Medication Grant program included in "Kendra’s Law" by providing access to all psychiatric services including medication, housing, comprehensive case management, day treatment and intensive rehabilitation programs. An individual will be able to receive services under Medicaid while an eligibility determination is being made—a process that routinely takes 60 to 90 days.
"A Medication Grants program with limited benefits and no guarantee that it will be available in each community of the state makes no sense from either a clinical or government efficiency standpoint," according to Susan Batkin, Director of the Mental Health Project at the Urban Justice Center in New York City, and coordinator for the Presumptive Medicaid Eligibility Coalition. "The existing Medicaid program is already available in all parts of the State, and adding additional state bureaucrats and hiring benefits managers to administer this new system merely diverts resources away from the patient into administration."
Harvey Rosenthal, Executive Director of the New York Association of Psychiatric Rehabilitation Services (NYAPRS), and chair of the Mental Health Action Network, added, "People in crisis need much more than just a pill. Presumptive Medicaid Eligibility will instead offer access to the full range of Medicaid-funded housing, treatment and support services we know are necessary to fully restore these persons to productive community life."
Sunday, November 6, 2011
A Nation Afflicted Like All Other Nations
If you're looking for a disease Orthodox Jews are immune from, try trichinosis. The following are my experiences with mental illness and why I think mental illness is as common in Monsey as it is in Bensonhurst.
"You ought to get yourself to Rav Smith," I told my friend Shimon very late one night. My advice was for him to change drachim in hashkafa (way of viewing) from chassidus to a shtikel (emotional chassidic) to a somewhat more litvish (rational) approach. I thought the change would ease his emotions. As if that mattered, as a bizzare descent into an agony called schizophrenia had begun for Shimon. Shimon was "losing it" and I didn't know what to do.
Shimon's elaborate euphoric grandstanding at 2 a.m. about my being able to coast through college was crystal clear to him. After all, I had cut corners on my minor psych. assignment. Other verbal rantings ought to have tipped me off that an emergency call to 911 or his therapist was in order. Seventy-two hours after my friend Shimon showed signs of being ill, I didn't pick up the phone. At nineteen (years old), all I could muster was a lame response about Torah outlook - not medical outlook.
Next time it was me, not my good friend. It was two years later and I was learning in Yerushalayim (Jersusalem). The learning stopped as my mind became sick. My brother, Reuven, desperate to help me, took me to a talmid chochom (learned wise man) near the Old City. As the three of us sat there in his small, sparcely decorated apartment, he told me something about writing a letter.
Two short hours later, after that futile letter advice, my life became a blur of bizarre sequences. Delusions that, due to their content and ability to make me feel removed from reality, evoked fierce pain. To this day I don't know what was real or what was imagined that horrid Erev (eve of) Yom Kippur night.
One delusion--as I think about it now--is quite funny. You see, I was a ritual watchman of the dead the winter before I went to Israel and got sick. During the Asseres Yemei Teshuva (ten days of atonement) I got the idea in my head that the previous winter I was somehow guilty of murdering some of these people. The idea was played over and over in my mind. As I couldn't shake the concept and thus the guilt -- the pain of it all increased. Very funny.
Guilt. Not the self-cleansing type of Yom Kippur, but the self-destructive, overpowering type is what I experienced in Yerushalayim. For the majority of people, the ways of Torah are very pleasant. On occasion, however, like my experience in Yerushalayim, it can be an impetus toward mental illness. But, whatever the home, or whatever the religion of the home, the situation there doesn't "make" one "crazy"; virtually all doctors recognize a strong organic component to mental illness. My funeral home delusion, which I mentioned earlier, probably came from a physical problem in my brain plus my imagination. If that is so, strictly in regard to the physiological aspect of mental illness, why would Jews be different than non-Jews? After all, Jews are susceptible to epilepsy and diabetes--just like non-Jews.
Epilepsy? Diabetes? Years ago, if I would have seen an article like this one written in a religious periodical, I would have thought it was for me, my friend Shimon and a mere handful of Orthodox deviants. Right after I came home from Yerushalayin, my brother helped me apply for Ohel Community Residence for mentally ill adults. The wait was an entire year. Evidently, there were more "deviants" than I had thought.
Six months ago my concept of mental illness in the Orthodox community changed again. I found out that a pharmacy serving predominantly Othordox Jews prescribes one drug more than any other--not for heart disease, nor for infant maladies, but for manic depressives. That drug is lithium.
Mental Illness is equally common amongst Orthodox Jews, irreligious, and non-Jews. So say two Jewish mental health experts. The responses were almost identical; something to the effect of--mental illness is almost exactly equal amongst Jew and non-Jew. They both confirmed that Orthodox Jews had about the same degree of illness, in their estimates, as non-Jews. One added that alcoholism is less of a problem, the other claimed depression is a greater problem. Both emphasized that they were not speaking based on any study and thus did not want to be quoted. However, both spoke without hesitation.
Since my getting sick in Yerushalayim, I've noticed that there is a group (and the group is large) which is sure that these two experts are wrong. We're too Heimish (homey) to get bulimia or have anxiety disorders. This group sometimes desperately hides its illnesses. And they do hide them well.
I'll tell you a story. At a clinic in the Upper East Side of Manhattan, which I went to in the early nineties, I got into a curious mood. I asked if there were any other Orthodox patients. "Yes," the receptionist responded nonchalantly, "but they go through the special door. They're afraid of being noticed."
I spoke to Rabbi Abraham J. Twerski, M.D. He spoke about this phenomenon of Jewish families having a tendency to keep mental illness private. Thus, they may delay or hold back treatment. On the postive side, he spoke of improvements. Organizations such as Petach Tikvah, Mishkan and Ohel are gaining much respect in recent years. I'm glad to hear that. Any improved situation in our dealing with mental illness means several things. It means we will call doctors sooner, not waiting to get treatment, ashamed of ones own children. It means even nineteen-year-olds will call Hatzala (local Orthodox emergency service) or 911--not nineteen-year-olds telling the sick one to go to a more litvish shiur (rational approach). I hope less have to go through the delusions I went through--especially if they work in a morgue.
"You ought to get yourself to Rav Smith," I told my friend Shimon very late one night. My advice was for him to change drachim in hashkafa (way of viewing) from chassidus to a shtikel (emotional chassidic) to a somewhat more litvish (rational) approach. I thought the change would ease his emotions. As if that mattered, as a bizzare descent into an agony called schizophrenia had begun for Shimon. Shimon was "losing it" and I didn't know what to do.
Shimon's elaborate euphoric grandstanding at 2 a.m. about my being able to coast through college was crystal clear to him. After all, I had cut corners on my minor psych. assignment. Other verbal rantings ought to have tipped me off that an emergency call to 911 or his therapist was in order. Seventy-two hours after my friend Shimon showed signs of being ill, I didn't pick up the phone. At nineteen (years old), all I could muster was a lame response about Torah outlook - not medical outlook.
Next time it was me, not my good friend. It was two years later and I was learning in Yerushalayim (Jersusalem). The learning stopped as my mind became sick. My brother, Reuven, desperate to help me, took me to a talmid chochom (learned wise man) near the Old City. As the three of us sat there in his small, sparcely decorated apartment, he told me something about writing a letter.
Two short hours later, after that futile letter advice, my life became a blur of bizarre sequences. Delusions that, due to their content and ability to make me feel removed from reality, evoked fierce pain. To this day I don't know what was real or what was imagined that horrid Erev (eve of) Yom Kippur night.
One delusion--as I think about it now--is quite funny. You see, I was a ritual watchman of the dead the winter before I went to Israel and got sick. During the Asseres Yemei Teshuva (ten days of atonement) I got the idea in my head that the previous winter I was somehow guilty of murdering some of these people. The idea was played over and over in my mind. As I couldn't shake the concept and thus the guilt -- the pain of it all increased. Very funny.
Guilt. Not the self-cleansing type of Yom Kippur, but the self-destructive, overpowering type is what I experienced in Yerushalayim. For the majority of people, the ways of Torah are very pleasant. On occasion, however, like my experience in Yerushalayim, it can be an impetus toward mental illness. But, whatever the home, or whatever the religion of the home, the situation there doesn't "make" one "crazy"; virtually all doctors recognize a strong organic component to mental illness. My funeral home delusion, which I mentioned earlier, probably came from a physical problem in my brain plus my imagination. If that is so, strictly in regard to the physiological aspect of mental illness, why would Jews be different than non-Jews? After all, Jews are susceptible to epilepsy and diabetes--just like non-Jews.
Epilepsy? Diabetes? Years ago, if I would have seen an article like this one written in a religious periodical, I would have thought it was for me, my friend Shimon and a mere handful of Orthodox deviants. Right after I came home from Yerushalayin, my brother helped me apply for Ohel Community Residence for mentally ill adults. The wait was an entire year. Evidently, there were more "deviants" than I had thought.
Six months ago my concept of mental illness in the Orthodox community changed again. I found out that a pharmacy serving predominantly Othordox Jews prescribes one drug more than any other--not for heart disease, nor for infant maladies, but for manic depressives. That drug is lithium.
Mental Illness is equally common amongst Orthodox Jews, irreligious, and non-Jews. So say two Jewish mental health experts. The responses were almost identical; something to the effect of--mental illness is almost exactly equal amongst Jew and non-Jew. They both confirmed that Orthodox Jews had about the same degree of illness, in their estimates, as non-Jews. One added that alcoholism is less of a problem, the other claimed depression is a greater problem. Both emphasized that they were not speaking based on any study and thus did not want to be quoted. However, both spoke without hesitation.
Since my getting sick in Yerushalayim, I've noticed that there is a group (and the group is large) which is sure that these two experts are wrong. We're too Heimish (homey) to get bulimia or have anxiety disorders. This group sometimes desperately hides its illnesses. And they do hide them well.
I'll tell you a story. At a clinic in the Upper East Side of Manhattan, which I went to in the early nineties, I got into a curious mood. I asked if there were any other Orthodox patients. "Yes," the receptionist responded nonchalantly, "but they go through the special door. They're afraid of being noticed."
I spoke to Rabbi Abraham J. Twerski, M.D. He spoke about this phenomenon of Jewish families having a tendency to keep mental illness private. Thus, they may delay or hold back treatment. On the postive side, he spoke of improvements. Organizations such as Petach Tikvah, Mishkan and Ohel are gaining much respect in recent years. I'm glad to hear that. Any improved situation in our dealing with mental illness means several things. It means we will call doctors sooner, not waiting to get treatment, ashamed of ones own children. It means even nineteen-year-olds will call Hatzala (local Orthodox emergency service) or 911--not nineteen-year-olds telling the sick one to go to a more litvish shiur (rational approach). I hope less have to go through the delusions I went through--especially if they work in a morgue.
Thursday, November 3, 2011
Through the Eyes of a Stranger - Part 1
Being diagnosed mentally ill does not mean that you have to be an outcast to yourself or society. Self-stigma is based on beliefs about ourselves as a result of influences of: 1) Society -childhood, family, friends, acquaintances values towards the mentally ill; 2) Institutional experiences, schooling, religious organizations, professionals and businesses attitudes about mental illness; 3) Media - television, newspaper, movies, etc. and their portrayal of the mentally ill population.
The identification I've made of self-stigma and its components are not based on books I've read, but rather on the life I've lived; I will begin with a brief history of my life and story. In 1989, I was diagnosed with paranoid schizophrenia. After years of private therapy, counseling and medication treatments, I was no further along toward recovery than when I started my downward spiral. In 1995, after five hospitalizations, a broken marriage, loss of income, an arrest and a failed suicide attempt, I finally found my spiritual self and began a road to recovery. This while in my sixth hospitalization in as many years. Finally, I was placed on medications that helped me. I was sent to live in an adult home where I would receive custodial care and begin a program with the SBPC's Bensonhurst Clinic.
As I became more involved with the clinic, I began to realize that I was stigmatizing myself due to my prior socialization. This had to change in order for me to recovery. By 1996, my complete diagnosis with paranoid schizophrenia with anxiety disorder and major depression - what a mouthful!
Since I was "high functioning," I was asked to participate in a facilitator training program sponsored at the SBPC utilizing Ed Knight's Mental Health Empowerment Project. I loved it! My enthusiasm grew and I became a participant in the SBPC Worker Development Program as a Consumer Advocate Trainee. Under this program, a recipient of mental health services can earn a small fee for services rendered while still in treatment. The program is helpful in developing self-esteem and skills needed to return to the work force. My enthusiasm grew, so did my self-esteem, and I began to overcome my "stigmatization" of myself.
I took my medications regularly, went to several professional and consumer led groups, and began to develop as a leader. I now look back and realize that although many professionals tried to help me, I couldn't begin to achieve my goals, dreams and desires for the future until I saw myself through more positive eyes.
The direction my life took at this point was toward a mode of recovery and a desire to share what I had learned over these years with other who had similar experiences. Self-"stigmatization" is stigma in its most destructive form since it is directed from the self upon the self. To overcome this takes strong will and the support of other consumers, self-help groups, providers of mental health services, family, and a responsive system.
In a research article by Courtenay Harding published in 1996 she quotes a group of men who were sitting in rocking chairs on the front porches of Board and Care homes. When asked why they were not working they said, "Well, my family gave up on me; so I gave up on me." Self-stigma thus developed from years of demoralization. Clearly, this is a major hurdle to overcome if recovery is to begin on any level.
The identification I've made of self-stigma and its components are not based on books I've read, but rather on the life I've lived; I will begin with a brief history of my life and story. In 1989, I was diagnosed with paranoid schizophrenia. After years of private therapy, counseling and medication treatments, I was no further along toward recovery than when I started my downward spiral. In 1995, after five hospitalizations, a broken marriage, loss of income, an arrest and a failed suicide attempt, I finally found my spiritual self and began a road to recovery. This while in my sixth hospitalization in as many years. Finally, I was placed on medications that helped me. I was sent to live in an adult home where I would receive custodial care and begin a program with the SBPC's Bensonhurst Clinic.
As I became more involved with the clinic, I began to realize that I was stigmatizing myself due to my prior socialization. This had to change in order for me to recovery. By 1996, my complete diagnosis with paranoid schizophrenia with anxiety disorder and major depression - what a mouthful!
Since I was "high functioning," I was asked to participate in a facilitator training program sponsored at the SBPC utilizing Ed Knight's Mental Health Empowerment Project. I loved it! My enthusiasm grew and I became a participant in the SBPC Worker Development Program as a Consumer Advocate Trainee. Under this program, a recipient of mental health services can earn a small fee for services rendered while still in treatment. The program is helpful in developing self-esteem and skills needed to return to the work force. My enthusiasm grew, so did my self-esteem, and I began to overcome my "stigmatization" of myself.
I took my medications regularly, went to several professional and consumer led groups, and began to develop as a leader. I now look back and realize that although many professionals tried to help me, I couldn't begin to achieve my goals, dreams and desires for the future until I saw myself through more positive eyes.
The direction my life took at this point was toward a mode of recovery and a desire to share what I had learned over these years with other who had similar experiences. Self-"stigmatization" is stigma in its most destructive form since it is directed from the self upon the self. To overcome this takes strong will and the support of other consumers, self-help groups, providers of mental health services, family, and a responsive system.
In a research article by Courtenay Harding published in 1996 she quotes a group of men who were sitting in rocking chairs on the front porches of Board and Care homes. When asked why they were not working they said, "Well, my family gave up on me; so I gave up on me." Self-stigma thus developed from years of demoralization. Clearly, this is a major hurdle to overcome if recovery is to begin on any level.
Wednesday, October 26, 2011
Destigmatizing Mental Illness Through The Schools
How many of us have at one time or another sighed a very long sigh and said, "What if?" As the parent of a son with three psychiatric diagnoses, schizophrenia, OCD, and panic disorder, my "what ifs" center around him. What if we had been more knowledgeable about mental illness and recognized Doug's symptoms early on? What if he had been diagnosed correctly and treated immediately? What if his friends hadn't deserted him? The list of "could-haves" and "might-have-beens" goes on and on accompanied by the requisite recriminations and self-doubt.
I still remember believing that Doug had an undiagnosed attention deficit disorder. Why he barely focused on anything I said. It got so bad that if I had to tell him something really important, I would have to hold his head to get him to look at me and then over enunciate every word. It was like speaking to someone who was deaf. Even then I wasn't sure that what I had to say was really penetrating that clearly preoccupied brain of his.
And I remember, too, that once he had his first psychotic break and there was no denying there was something very, very wrong, his friends didn't know what to do either. They were frightened and distraught, but no one would give them any information. What's wrong with Doug? A deafening silence because after all, nothing could be revealed. Confidentiality, you know, was the way guidance counselors and school psychologists explained it.
But, of course, there is no going backward. We all have to accept where we are at the moment and look ahead to what we hope will be a better life for ourselves, our family members, and everyone else with a major mental illness. And that brings me to what for me has become a consuming passion: the mission to change attitudes about mental illness by educating all children and teens about these devastating disorders through the schools.
Beginning in 1993 with matching grants from NAMI and NAMI-NYS, I worked with other teachers with mental illness in their families to develop lesson plans on mental illness for three grade levels: upper elementary, middle school, and high school. These lessons humanized serious mental illness. Through sharing our family stories, students learned not just the facts about mental illness, but also the emotional toll these crippling illnesses take on everyone involved.
Elementary school students learned about Lisa whose brother had recently been hospitalized with a serious psychiatric disorder. What, she wondered, had happened to her brother who had always been so close and now spent much of his day locked in his room? And what should she do about classmates who were overheard making fun of her brother and calling him "a mental?"
Middle school students learned about a high achieving high school student who began to unravel during a summer at camp. The aftermath of a fight with another camper took over his life, and what should have been a meaningless scrape over nothing very important became something that preoccupied his every waking hour. He would sue his attacker, he would sue the camp, and he wouldn't rest until justice had been done. His paranoia and obsessive behavior finally came to a head with him cowering in the corner of his room in a psychiatric hospital.
High school students were asked to examine their attitudes and those of their community about mental illness. What words do they associate with mental illness? What impact might this kind of stigmatizing language have on someone with a mental illness? How would it affect their family? How would you and others feel if a group home moved into your community? How would the people in the group home feel? And through discussion and anecdotes students learn the symptoms of schizophrenia and the impact of stigma. They are clearly moved as they hear about a formerly popular young man whose friends thoughtlessly desert him when he develops the symptoms of schizophrenia.
The popularity of these lessons was such that in 1998 they were expanded as part of NAMI's campaign to end discrimination. They now contain posters, games, follow-up activities tied to the general curriculum as well as additional lessons. The posters and games proved to be a particular hit. A cartoon brain with a bandage and an ice pack on its head is at the top of the elementary school poster. A caption beside it reads: "Brains can get sick, but they can also get well again." And "The Brain Game," a competitive board game which rewards stigma busting and penalizes stigmatizing behavior, has been especially popular with middle school students.
Happily the popularity of "Breaking the Silence" (BTS) extends beyond. For example, this past year all health education administrators in the New York Public Schools began the school year with a workshop which featured our lessons. They were also featured on an Emmy Award nominated TV program, The God Squad, which is sponsored by the Catholic Diocese. Emails have come from as far away as Japan requesting information about BTS.
Mental health professionals have taken a special interest in our lessons. Last year the New York State Office of Mental Health made "Breaking the Silence" available to all health teachers and ancillary personnel in the state free of charge. We are also happy to report that we have just received an order from the Alabama Department of Mental Health and Retardation for 4,000 of our lesson plans as part of a statewide anti-stigma campaign, one of many out of state orders.
I like to dream of the time when young people will recoil when they hear stigmatizing remarks about mental illness in the same way they respond with disgust to racist or anti-Semitic slurs. And I like to hope that the time will come, too, when people will recognize the early onset of symptoms in themselves and get treatment because they have learned about mental illness in a class at school.
Impossible dream? I don't think so. Clearly from the response we have received we know that educating students about mental illness is an idea whose time has come.
I still remember believing that Doug had an undiagnosed attention deficit disorder. Why he barely focused on anything I said. It got so bad that if I had to tell him something really important, I would have to hold his head to get him to look at me and then over enunciate every word. It was like speaking to someone who was deaf. Even then I wasn't sure that what I had to say was really penetrating that clearly preoccupied brain of his.
And I remember, too, that once he had his first psychotic break and there was no denying there was something very, very wrong, his friends didn't know what to do either. They were frightened and distraught, but no one would give them any information. What's wrong with Doug? A deafening silence because after all, nothing could be revealed. Confidentiality, you know, was the way guidance counselors and school psychologists explained it.
But, of course, there is no going backward. We all have to accept where we are at the moment and look ahead to what we hope will be a better life for ourselves, our family members, and everyone else with a major mental illness. And that brings me to what for me has become a consuming passion: the mission to change attitudes about mental illness by educating all children and teens about these devastating disorders through the schools.
Beginning in 1993 with matching grants from NAMI and NAMI-NYS, I worked with other teachers with mental illness in their families to develop lesson plans on mental illness for three grade levels: upper elementary, middle school, and high school. These lessons humanized serious mental illness. Through sharing our family stories, students learned not just the facts about mental illness, but also the emotional toll these crippling illnesses take on everyone involved.
Elementary school students learned about Lisa whose brother had recently been hospitalized with a serious psychiatric disorder. What, she wondered, had happened to her brother who had always been so close and now spent much of his day locked in his room? And what should she do about classmates who were overheard making fun of her brother and calling him "a mental?"
Middle school students learned about a high achieving high school student who began to unravel during a summer at camp. The aftermath of a fight with another camper took over his life, and what should have been a meaningless scrape over nothing very important became something that preoccupied his every waking hour. He would sue his attacker, he would sue the camp, and he wouldn't rest until justice had been done. His paranoia and obsessive behavior finally came to a head with him cowering in the corner of his room in a psychiatric hospital.
High school students were asked to examine their attitudes and those of their community about mental illness. What words do they associate with mental illness? What impact might this kind of stigmatizing language have on someone with a mental illness? How would it affect their family? How would you and others feel if a group home moved into your community? How would the people in the group home feel? And through discussion and anecdotes students learn the symptoms of schizophrenia and the impact of stigma. They are clearly moved as they hear about a formerly popular young man whose friends thoughtlessly desert him when he develops the symptoms of schizophrenia.
The popularity of these lessons was such that in 1998 they were expanded as part of NAMI's campaign to end discrimination. They now contain posters, games, follow-up activities tied to the general curriculum as well as additional lessons. The posters and games proved to be a particular hit. A cartoon brain with a bandage and an ice pack on its head is at the top of the elementary school poster. A caption beside it reads: "Brains can get sick, but they can also get well again." And "The Brain Game," a competitive board game which rewards stigma busting and penalizes stigmatizing behavior, has been especially popular with middle school students.
Happily the popularity of "Breaking the Silence" (BTS) extends beyond. For example, this past year all health education administrators in the New York Public Schools began the school year with a workshop which featured our lessons. They were also featured on an Emmy Award nominated TV program, The God Squad, which is sponsored by the Catholic Diocese. Emails have come from as far away as Japan requesting information about BTS.
Mental health professionals have taken a special interest in our lessons. Last year the New York State Office of Mental Health made "Breaking the Silence" available to all health teachers and ancillary personnel in the state free of charge. We are also happy to report that we have just received an order from the Alabama Department of Mental Health and Retardation for 4,000 of our lesson plans as part of a statewide anti-stigma campaign, one of many out of state orders.
I like to dream of the time when young people will recoil when they hear stigmatizing remarks about mental illness in the same way they respond with disgust to racist or anti-Semitic slurs. And I like to hope that the time will come, too, when people will recognize the early onset of symptoms in themselves and get treatment because they have learned about mental illness in a class at school.
Impossible dream? I don't think so. Clearly from the response we have received we know that educating students about mental illness is an idea whose time has come.
Thursday, October 20, 2011
Answers From Margaret Ray's Mother
We all remember Margaret Ray who became fodder for the tabloid media for becoming obsessed with talk-show host David Letterman. She repeatedly broke into his home in New Canaan, Conn., camped out on his tennis court and on one occasion stole his Porsche. Ray had schizophrenia like two of her brothers. And like them, she also commit suicide. Her tale was tragic behind all of the kidding. New York City Voices' Editor Danny Frey had the pleasure of meeting Loretta Duvall, Ray's mother, at the Department of Mental Health, Mental Retardation and Alcoholism Service's Seventh Annual Mental Hygiene Awards last year, and the following questions were answered through an Internet correspondence.
Question: What was a major indication to you that something was mentally wrong with your daughter?
Answer: Margaret showed a lack of good judgment in her 18th, 19th and 20th years. She made irresponsible decisions. I attributed this to changes in the family lifestyle: my contested divorce, her entering college, sale of home. I did not recognize this behavior as anything other than a reaction to stress.
Question: After you realized that Margaret had a mental problem, what did you and your family do?
Answer: Margaret was married and showed a strong devotion to her husband at the time. I realized that she needed professional care. I could do nothing. She distanced herself from me and her family. Her husband held me responsible for her behavior. There was very little that I could do. I continued to love her, tolerate her behavior and once took her for counseling. She lived many miles away.
Question: How often did you visit Margaret in the mental hospital?
Answer: Rarely. I did visit at Fairfield Hills, CT and I went to Niantic State Prison, but she refused to see me. I also visited her in Kissimmee, FL Prison. She was in prison hospitals throughout the country.
Question: It seemed like Margaret was very loud and vocal when she was sick (many schizophrenics are quiet and introverted). Do you think someone with schizophrenia would get the necessary treatment as fast if they were quiet and sick?
Answer: I don't know, Dan. It would be an interesting study. I think firmly that people who are mentally ill and commit publicized crimes get lots of attention. The public seems to become titillated about viewing and reading about this. Strange.
Question: Were you afraid that Margaret might take her own life?
Answer: I never thought so. She as a whole was a positive thinker, resourceful and creative.
Question: Describe how you felt the first time you saw Margaret on television in connection with stalking David Letterman.
Answer: I first heard about Margarets escapade when I was notified by the police at my home. I do not recall the very first time I saw her on TV. But I did. Most of the time I was informed of her appearances. I have had copies made of some of the publicity. It was national and international news. Until her death no one publicly defended her (there were several judges and law enforcement people who tried to help). It was a long, long tragedy.
Question: What made you finally agree to take your family's story of schizophrenia to the public, not just Margaret's, but your other children's as well?
Answer: I committed to giving up my privacy (which is dear to me) and my pride (which helped no one) to try to bring the pain, the shame and guilt, the disdain and stigma out into the open. I want to do this with love, respect, facts and figures and mostly education.
Question: What was a major indication to you that something was mentally wrong with your daughter?
Answer: Margaret showed a lack of good judgment in her 18th, 19th and 20th years. She made irresponsible decisions. I attributed this to changes in the family lifestyle: my contested divorce, her entering college, sale of home. I did not recognize this behavior as anything other than a reaction to stress.
Question: After you realized that Margaret had a mental problem, what did you and your family do?
Answer: Margaret was married and showed a strong devotion to her husband at the time. I realized that she needed professional care. I could do nothing. She distanced herself from me and her family. Her husband held me responsible for her behavior. There was very little that I could do. I continued to love her, tolerate her behavior and once took her for counseling. She lived many miles away.
Question: How often did you visit Margaret in the mental hospital?
Answer: Rarely. I did visit at Fairfield Hills, CT and I went to Niantic State Prison, but she refused to see me. I also visited her in Kissimmee, FL Prison. She was in prison hospitals throughout the country.
Question: It seemed like Margaret was very loud and vocal when she was sick (many schizophrenics are quiet and introverted). Do you think someone with schizophrenia would get the necessary treatment as fast if they were quiet and sick?
Answer: I don't know, Dan. It would be an interesting study. I think firmly that people who are mentally ill and commit publicized crimes get lots of attention. The public seems to become titillated about viewing and reading about this. Strange.
Question: Were you afraid that Margaret might take her own life?
Answer: I never thought so. She as a whole was a positive thinker, resourceful and creative.
Question: Describe how you felt the first time you saw Margaret on television in connection with stalking David Letterman.
Answer: I first heard about Margarets escapade when I was notified by the police at my home. I do not recall the very first time I saw her on TV. But I did. Most of the time I was informed of her appearances. I have had copies made of some of the publicity. It was national and international news. Until her death no one publicly defended her (there were several judges and law enforcement people who tried to help). It was a long, long tragedy.
Question: What made you finally agree to take your family's story of schizophrenia to the public, not just Margaret's, but your other children's as well?
Answer: I committed to giving up my privacy (which is dear to me) and my pride (which helped no one) to try to bring the pain, the shame and guilt, the disdain and stigma out into the open. I want to do this with love, respect, facts and figures and mostly education.
Friday, October 14, 2011
One Patient's Journey to Mental Wellness
I remember my first visit to the Park Slope Center for Mental Health. As I rode the F train to the 7th Avenue station in Brooklyn, voices I heard then in my head were busy warning me to be fearful of two men who shared the train car with me. These voices told me the men were staring at me and planning to do me harm. Then suddenly the train pulled into my station. I didn't move, waiting to see whether these two men were planning on departing the train. I waited almost too long in fact as I had to struggle to keep the train doors open to make it out onto the subway platform. The two men didn't follow. The voices roared with laughter at my clumsy escape from this danger, and they began to recite a litany of demeaning and horrid statements to me.
This happened on a cool, crisp spring day in 1991. As I tell you my experience, you will soon understand why this event seems like ancient history to me today.
Upon my arrival at 464 Ninth Street in the Prospect Park section of Brooklyn, I was convinced I had been given the wrong address. I checked the address written on the paper in my shirt pocket several times before I approached, hesitantly, the four-story brownstone with the address on its door. After thirty years in the mental health system, I had never seen any mental health center or clinic that looked even remotely like this building.
Once I entered the building, I was sure I was in the wrong place. The foyer, alive with plants, and a smiling, friendly woman couldn't possibly be the reception area of a mental health center. In fact, the entire look and feel of the reception room, hallway, rising staircase, and later the offices, was totally "un-clinic-like!" Instead, Park Slope Center for Mental Health offered an ambiance resembling someone's home; and not just anyone's; someone very special's.
Despite all this, I found this was the right place. I had an appointment at 2 p.m. and I was early, I was told by a friendly, smiling woman named Ann.
While I waited to be seen by someone, my eyes roamed over the walls, Victorian-style fireplace, mantel, and a majestic, intricately carved wooden ceiling which had been carefully, hand crafted by an artisan from another time. For some time, in fact, I was convinced I had been transported back myself to a turn-of-the-century sitting room where I sat on an antique old wooden bench, enjoying the visions of historic Brooklyn prints on the walls and aged photos arranged on the fireplace mantel and beautifully framed in all sorts of frameworks from days long ago.
Jolted back to my reality by the sudden return of the voices which had been a part of my life since I was 15 years old and diagnosed a paranoid schizophrenic with psychotic symptoms, including auditory hallucinations, I began to look back at the more than thirty years I had spent living in state mental hospitals, halfway houses, community residences, or homeless.
I had just been released from Manhattan Psychiatric Center on Ward's Island, where I had spent close to two years. I had spent time too in Harlem Valley Psychiatric Center in Wingdale, New York, before I was discharged from my latest attempt at suicide; a serious attempt to jump from a thirty-story building in Manhattan, followed by numerous efforts to hang myself in these hospitals. The voices I had heard since I was 15 years old had commanded me to jump, and as I sat waiting to be seen, these voices reminded me that I had failed again. They told me too that I wouldn't fail the next time, and they had already started making plans for my next suicide.
"Hello, Mr. Steele. My name is Dr. Rita Seiden."
These words and the woman who spoke them startled me and the voices only I could hear. I looked up. She smiled, looking me directly in the eyes, and invited me into her office.
As I entered, the look and the feel I had earlier described about this place were undoubtedly an expression of this person. She was clearly its architect because her office reflected the same warmth and "home-like" ambiance, but even more so. As time would pass I would realize why I sensed it more intently in her room. I had been invited into the "heart" of this place, and I truly felt like an important guest and not a patient from the first visit to Park Slope Center for Mental Health. Soon I would discover most patients of this mental health center felt the same way, like guests. Never before had they been treated with the kind of respect, care, sensitivity, and support which are the living ornaments of this mental health center. From Board Chairman, to Executive Director, to reception staff, this is how these professionals approach their work.
Little did I know then that at this special place some very important work would be done. I would actually reclaim my life from my paranoid schizophrenia, but not so fast, nor easy, or without hard, hard work, and several relapses. Yes, and even one more attempt to escape treatment and destroy my life.
I almost wasn't welcomed back after I had ran away and severed therapy which had been threatening, direct, and uncompromising from the start. Once I had left a doctor, or a place, I had never returned during the more than thirty years I have been in the system.
I returned this time. The only explanation I can offer is that the "heart" which I felt from the first day I visited Park Slope Center for Mental Health overcame the direct wishes and demands of the schizophrenic voices which had commanded my life's activities from the day they had arrived in my adolescence.
This accomplishment, by itself, was life-altering, and we haven't even got to the best part yet. Much more hard work would separate this first breakthrough and the next, and there would be more close calls, but in 1994, I was able to tell my doctor the truth: I was not taking the antipsychotic drugs they were prescribing for me because of the side effects. My not taking the medicine was not new. My ability to claw myself through the paranoia, delusional thinking, and the frightening, warning voices within my mind, to reach out and tell my doctor the truth was totally new. For once, my delusional voices and extreme paranoia had been beaten back. I had trusted someone, for the first time since I was 15 years old. This was a major breakthrough in my treatment and a change in direction for my life. At the time, I had no idea of exactly what unknown and miraculous factors I was allowing myself to experience. By telling the truth, I had given voice only to the overture of even greater things to come.
In 1993, I was prescribed a new antipsychotic; Risperdal. My doctor told me it was a new type of medication which produced far less side effects than the twelve or more I had endured over the past thirty years.
With my delusional voices still influencing me, and at full auditory volume, I was asked to honestly give this medication a chance. If I didn't want to take it, I didn't have to lie about taking it. There would be no reprisals, I was told. Even with these promises, the voices went straight to work trying to stop me from taking the medicine. But, somehow, I did. One day at a time; winning one battle over my delusions one day at a time. My new found trust in someone was my anchor during this period. Then, in early 1995, the voices stopped completely. Seven months after I had started taking the Risperdal the voices had left me.
At first, I terrified. I began to panic. I wanted them to come back. I was alone for the first time in my life. I won't tell you that it was easy during the next several months as I had to fight to stay outside my schizophrenia, taking my Risperdal, and starting to take control of my life. During this time, I would move into the first independent apartment I have ever lived in alone. I would learn how to live alone without voices and other people being present, and I have even come to enjoy my time alone.
Today--a mere six years since my subway ride and first visit to this special place located in the Prospect Park area of Brooklyn--I am actively involved with helping other guests like myself as I have become a consumer advocate with the Park Slope Center for Mental Health. I coordinate Consumer-Run Programs here. These programs include two highly respected local and state recognized consumer initiatives: the New York Mental Health Voter Empowerment Project, which has registered close to 20,000 mental health recipients in Greater New York City during the past three years, many for the first times in their lives, and New York City Voices: A Consumer Journal for Mental Health Advocacy, a completely consumer-run and directed journal which gives voice to others like myself who have been silenced by their illnesses.
But, most importantly, I have genuine relationships with people based on realities and not delusions. I live independently in the community for the first time in my life, and I am able to look in the mirror and see the me I never got a chance to meet or know before. And this is only the beginning.
This happened on a cool, crisp spring day in 1991. As I tell you my experience, you will soon understand why this event seems like ancient history to me today.
Upon my arrival at 464 Ninth Street in the Prospect Park section of Brooklyn, I was convinced I had been given the wrong address. I checked the address written on the paper in my shirt pocket several times before I approached, hesitantly, the four-story brownstone with the address on its door. After thirty years in the mental health system, I had never seen any mental health center or clinic that looked even remotely like this building.
Once I entered the building, I was sure I was in the wrong place. The foyer, alive with plants, and a smiling, friendly woman couldn't possibly be the reception area of a mental health center. In fact, the entire look and feel of the reception room, hallway, rising staircase, and later the offices, was totally "un-clinic-like!" Instead, Park Slope Center for Mental Health offered an ambiance resembling someone's home; and not just anyone's; someone very special's.
Despite all this, I found this was the right place. I had an appointment at 2 p.m. and I was early, I was told by a friendly, smiling woman named Ann.
While I waited to be seen by someone, my eyes roamed over the walls, Victorian-style fireplace, mantel, and a majestic, intricately carved wooden ceiling which had been carefully, hand crafted by an artisan from another time. For some time, in fact, I was convinced I had been transported back myself to a turn-of-the-century sitting room where I sat on an antique old wooden bench, enjoying the visions of historic Brooklyn prints on the walls and aged photos arranged on the fireplace mantel and beautifully framed in all sorts of frameworks from days long ago.
Jolted back to my reality by the sudden return of the voices which had been a part of my life since I was 15 years old and diagnosed a paranoid schizophrenic with psychotic symptoms, including auditory hallucinations, I began to look back at the more than thirty years I had spent living in state mental hospitals, halfway houses, community residences, or homeless.
I had just been released from Manhattan Psychiatric Center on Ward's Island, where I had spent close to two years. I had spent time too in Harlem Valley Psychiatric Center in Wingdale, New York, before I was discharged from my latest attempt at suicide; a serious attempt to jump from a thirty-story building in Manhattan, followed by numerous efforts to hang myself in these hospitals. The voices I had heard since I was 15 years old had commanded me to jump, and as I sat waiting to be seen, these voices reminded me that I had failed again. They told me too that I wouldn't fail the next time, and they had already started making plans for my next suicide.
"Hello, Mr. Steele. My name is Dr. Rita Seiden."
These words and the woman who spoke them startled me and the voices only I could hear. I looked up. She smiled, looking me directly in the eyes, and invited me into her office.
As I entered, the look and the feel I had earlier described about this place were undoubtedly an expression of this person. She was clearly its architect because her office reflected the same warmth and "home-like" ambiance, but even more so. As time would pass I would realize why I sensed it more intently in her room. I had been invited into the "heart" of this place, and I truly felt like an important guest and not a patient from the first visit to Park Slope Center for Mental Health. Soon I would discover most patients of this mental health center felt the same way, like guests. Never before had they been treated with the kind of respect, care, sensitivity, and support which are the living ornaments of this mental health center. From Board Chairman, to Executive Director, to reception staff, this is how these professionals approach their work.
Little did I know then that at this special place some very important work would be done. I would actually reclaim my life from my paranoid schizophrenia, but not so fast, nor easy, or without hard, hard work, and several relapses. Yes, and even one more attempt to escape treatment and destroy my life.
I almost wasn't welcomed back after I had ran away and severed therapy which had been threatening, direct, and uncompromising from the start. Once I had left a doctor, or a place, I had never returned during the more than thirty years I have been in the system.
I returned this time. The only explanation I can offer is that the "heart" which I felt from the first day I visited Park Slope Center for Mental Health overcame the direct wishes and demands of the schizophrenic voices which had commanded my life's activities from the day they had arrived in my adolescence.
This accomplishment, by itself, was life-altering, and we haven't even got to the best part yet. Much more hard work would separate this first breakthrough and the next, and there would be more close calls, but in 1994, I was able to tell my doctor the truth: I was not taking the antipsychotic drugs they were prescribing for me because of the side effects. My not taking the medicine was not new. My ability to claw myself through the paranoia, delusional thinking, and the frightening, warning voices within my mind, to reach out and tell my doctor the truth was totally new. For once, my delusional voices and extreme paranoia had been beaten back. I had trusted someone, for the first time since I was 15 years old. This was a major breakthrough in my treatment and a change in direction for my life. At the time, I had no idea of exactly what unknown and miraculous factors I was allowing myself to experience. By telling the truth, I had given voice only to the overture of even greater things to come.
In 1993, I was prescribed a new antipsychotic; Risperdal. My doctor told me it was a new type of medication which produced far less side effects than the twelve or more I had endured over the past thirty years.
With my delusional voices still influencing me, and at full auditory volume, I was asked to honestly give this medication a chance. If I didn't want to take it, I didn't have to lie about taking it. There would be no reprisals, I was told. Even with these promises, the voices went straight to work trying to stop me from taking the medicine. But, somehow, I did. One day at a time; winning one battle over my delusions one day at a time. My new found trust in someone was my anchor during this period. Then, in early 1995, the voices stopped completely. Seven months after I had started taking the Risperdal the voices had left me.
At first, I terrified. I began to panic. I wanted them to come back. I was alone for the first time in my life. I won't tell you that it was easy during the next several months as I had to fight to stay outside my schizophrenia, taking my Risperdal, and starting to take control of my life. During this time, I would move into the first independent apartment I have ever lived in alone. I would learn how to live alone without voices and other people being present, and I have even come to enjoy my time alone.
Today--a mere six years since my subway ride and first visit to this special place located in the Prospect Park area of Brooklyn--I am actively involved with helping other guests like myself as I have become a consumer advocate with the Park Slope Center for Mental Health. I coordinate Consumer-Run Programs here. These programs include two highly respected local and state recognized consumer initiatives: the New York Mental Health Voter Empowerment Project, which has registered close to 20,000 mental health recipients in Greater New York City during the past three years, many for the first times in their lives, and New York City Voices: A Consumer Journal for Mental Health Advocacy, a completely consumer-run and directed journal which gives voice to others like myself who have been silenced by their illnesses.
But, most importantly, I have genuine relationships with people based on realities and not delusions. I live independently in the community for the first time in my life, and I am able to look in the mirror and see the me I never got a chance to meet or know before. And this is only the beginning.
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