The Mirror She was the best friend I ever had, becasue she didn't leave when things were bad. Thoughout my life, she'd periodic...
Home / Archives for 2011
Sunday, December 25, 2011
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 c...
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 incr...
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 ...
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, N...
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 Juli...
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 appointm...
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...
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. Fortun...
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 o...
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. ...
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...
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. Ima...
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...
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...
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 ours...
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 psychiat...
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 repeated...
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...
Tuesday, October 11, 2011
The Procreative Urge
Walking through Central Park I can’t help but think of babies. Moms and nannies push infants in strollers with a happy gleam in their eyes. ...
Monday, October 10, 2011
A Pregnant Pause: Anti-Psychotic Medication And Growing A Baby
Whenever I attended a NAMI or NARSAD conference during the past ten years, I asked the medical panel the same question—albeit a hypothetical...
Saturday, September 24, 2011
Conquering Depression
Shock treatment. When I mention to other consumers that I go for shock treatments, also known as electro-convulsive therapy (ECT), the react...
Sunday, September 18, 2011
Poetry : The Primal Scream
The Primal Scream ...sometimes it is good to let the baby sparrow die so a new day can hatch laughter died when it was too afraid to l...
Thursday, September 15, 2011
Out to Prove Them Wrong
For the past year myself and others have been advocating for the housing for mentally ill adults with children. I've been told that drea...
Wednesday, September 14, 2011
When Going Back to School is Not Going On
September’s here. It’s back to school time for children and teens across the country. But for many, a return to school is an instigator of f...
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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.
Tuesday, October 11, 2011
The Procreative Urge
Walking through Central Park I can’t help but think of babies. Moms and nannies push infants in strollers with a happy gleam in their eyes. I feel a silent moan ooze from my empty womb as my biological clock ticks. I get this baby urge every month or so, and it lasts from one hour up to one week. My desire to be a mother is becoming ever stronger as I near my thirtieth birthday.
There are many things for me to consider first. Although I’ve learned to handle my depression pretty well -- it is only with the help of my therapy sessions, Prozac and Wellbutrin. I’ve been on the meds for like two years now and they have helped me tremendously. But now that I’m thinking of becoming a mom -- I face the reality of having to go off medications to ensure a healthy pregnancy.
My rational side noses in and reminds me that I’m jumping the gun. I need to graduate college before I have a baby. My husband and I need to save money. We need to move out of the city. We need, we need, we need.
Yes, I realize it is not the perfect time for my husband and I to have a child yet. I know we would like to have the conditions just right, but I also know that we could end up waiting forever for the “perfect” conditions. I feel emotionally ready to have that new life inside of me, growing, feeding within me. Then I question my motives. Is the baby urge just the desire to be impregnated with some kind of new life? An urge to be filled with new possibility and potential? Perhaps it is an impulse to be filled with new creative power, a new story, or a new article?
No, I know it is more than that. I want someone to depend on me. I am ready to love and support another life.
With my desire to get pregnant one day in mind, my doctor and I decided to try lowering my dosage to see how I would react. My depression came back fast and strong. The old suicidal thoughts told me that any stress or challenge should cause me to just give up and die. It was back to regular dosage for me. I had to face the fact that maybe I’d never be able to go off medication. What about when my husband and I try to get pregnant?
There are no proven side effects on an unborn baby from the meds I’m taking, but why take a chance? My psychiatrist feels it’s best to go off my meds a month before trying to get pregnant and stay off them for at least the first trimester of pregnancy. Will I be able to stop medication and still feel okay?
My doctor thinks that the excitement of getting pregnant should be enough to keep me from feeling too depressed or hopeless. That sounds reasonable, but then other questions form in my mind. What if I get pregnant before I’m ready -- when I’m still on Prozac? What then? I always thought I could put off thinking about such matters, but what happens if the future turns out to be sooner than later? How will I face it? Will I be strong enough? Will I ever not need to medicate?
And then the deeper questions surface. Will I be a good mother? Will I pass on my illness to our children? I know I’ll be a good mom, but...wait, how can I know?
In session, I explore my questions. I realize that I’m obsessing again about my need for perfection. I’ve obsessed about my body, my beauty and my intellect. Now I’m obsessing about being the “perfect” mom. I’ve learned to face my desire to be the best in other areas of my life, and this awareness of my obsessiveness helps me to get past it. I will get past this, too. It’s good I’m facing a potential problem before it even occurs. There is no perfect mother. Just mothers doing their best and loving their children all that they can.
I do my practice now. Prepare myself. I am loving myself and accepting myself as much as possible. I will continue to grow in love and allow myself to be human. And I will be a wonderful mother. Not perfect, but very loving and forgiving -- as I have learned to be towards myself. And truthful at all times. And attentive. For my children, and God willing, for myself.
Ah. There it is again. The baby urge. The warmth flowing through my body and mind and soul. For now, I quench the feeling by writing, by giving birth to new stories and new ideas.
I give birth every day. I am nurtured and give nurturance. Today, I express my creative urges with words, letting them flow onto paper as leaves tumble through wheels of strollers in the park. Tomorrow, it may be my own womb that hums ands rolls and gurgles. It will gurgle out loud one day. Until then, I write. I type my words upon computer keys and quiet my urge to be the mother of new things.
The Procreative Urge
By Sheila Hageman
There are many things for me to consider first. Although I’ve learned to handle my depression pretty well -- it is only with the help of my therapy sessions, Prozac and Wellbutrin. I’ve been on the meds for like two years now and they have helped me tremendously. But now that I’m thinking of becoming a mom -- I face the reality of having to go off medications to ensure a healthy pregnancy.
My rational side noses in and reminds me that I’m jumping the gun. I need to graduate college before I have a baby. My husband and I need to save money. We need to move out of the city. We need, we need, we need.
Yes, I realize it is not the perfect time for my husband and I to have a child yet. I know we would like to have the conditions just right, but I also know that we could end up waiting forever for the “perfect” conditions. I feel emotionally ready to have that new life inside of me, growing, feeding within me. Then I question my motives. Is the baby urge just the desire to be impregnated with some kind of new life? An urge to be filled with new possibility and potential? Perhaps it is an impulse to be filled with new creative power, a new story, or a new article?
No, I know it is more than that. I want someone to depend on me. I am ready to love and support another life.
With my desire to get pregnant one day in mind, my doctor and I decided to try lowering my dosage to see how I would react. My depression came back fast and strong. The old suicidal thoughts told me that any stress or challenge should cause me to just give up and die. It was back to regular dosage for me. I had to face the fact that maybe I’d never be able to go off medication. What about when my husband and I try to get pregnant?
There are no proven side effects on an unborn baby from the meds I’m taking, but why take a chance? My psychiatrist feels it’s best to go off my meds a month before trying to get pregnant and stay off them for at least the first trimester of pregnancy. Will I be able to stop medication and still feel okay?
My doctor thinks that the excitement of getting pregnant should be enough to keep me from feeling too depressed or hopeless. That sounds reasonable, but then other questions form in my mind. What if I get pregnant before I’m ready -- when I’m still on Prozac? What then? I always thought I could put off thinking about such matters, but what happens if the future turns out to be sooner than later? How will I face it? Will I be strong enough? Will I ever not need to medicate?
And then the deeper questions surface. Will I be a good mother? Will I pass on my illness to our children? I know I’ll be a good mom, but...wait, how can I know?
In session, I explore my questions. I realize that I’m obsessing again about my need for perfection. I’ve obsessed about my body, my beauty and my intellect. Now I’m obsessing about being the “perfect” mom. I’ve learned to face my desire to be the best in other areas of my life, and this awareness of my obsessiveness helps me to get past it. I will get past this, too. It’s good I’m facing a potential problem before it even occurs. There is no perfect mother. Just mothers doing their best and loving their children all that they can.
I do my practice now. Prepare myself. I am loving myself and accepting myself as much as possible. I will continue to grow in love and allow myself to be human. And I will be a wonderful mother. Not perfect, but very loving and forgiving -- as I have learned to be towards myself. And truthful at all times. And attentive. For my children, and God willing, for myself.
Ah. There it is again. The baby urge. The warmth flowing through my body and mind and soul. For now, I quench the feeling by writing, by giving birth to new stories and new ideas.
I give birth every day. I am nurtured and give nurturance. Today, I express my creative urges with words, letting them flow onto paper as leaves tumble through wheels of strollers in the park. Tomorrow, it may be my own womb that hums ands rolls and gurgles. It will gurgle out loud one day. Until then, I write. I type my words upon computer keys and quiet my urge to be the mother of new things.
The Procreative Urge
By Sheila Hageman
Monday, October 10, 2011
A Pregnant Pause: Anti-Psychotic Medication And Growing A Baby
Whenever I attended a NAMI or NARSAD conference during the past ten years, I asked the medical panel the same question—albeit a hypothetical one for me at the time: Is it safe to take anti-psychotic medication if a woman is pregnant? Since the moment in April 1990 when I realized that I needed to stay on my medication for schizophrenia, I’ve feared getting pregnant while on Trilafon. It’s loomed like a teetering boulder poised atop a steep cliff and ready to roll who-knew-where. Would a developing fetus absorbing my prescribed pill be damaged at birth, harbor a time bomb of unknown suffering years down the road, or, my hope beyond hope, actually be healthy?
Until 1998, the responses I received at the conferences remained remarkably consistent with two replies: 1. Not much research has been done in this area, so not much is known; 2. The conventional wisdom is for women to go off their medications at least from conception until the first trimester when the major organs develop.
Great, I thought, I had finally accepted that I needed to stay on my medication only to find out if I wanted to grow a baby, I’d need to go off it. That thought scared me more than having a baby with birth defects. And it wasn’t just a weekend medication holiday—conceiving could take anywhere from six months to a year. Underneath my question sat relief that I didn’t really have to face the issue.
Then in 1998, I heard something different. I attended a NARSAD conference, asked my question of the panel and received the usual replies. But immediately following the session, three women walked over to speak to me. They all had daughters who were diagnosed with schizophrenia and who had given birth to healthy children. Two of the daughters became pregnant while on medication, and one daughter went off her medication but became psychotic after the baby was born.
Soon after the conference, I discovered that my gynecologist had worked with psychiatric patients on Mellaril or Haldol during her residency. She told me that these patients’ babies had been born healthy. According to my gynecologist, the most difficult pregnancies occurred when women went off their medications. “Being psychotic is more harmful to a fetus than anti-psychotic drugs,” she said.
She went on to explain that there usually was a difference in thinking between the ob-gyns and the psychiatrists—the ob-gyns preferred women to stay on their medication and the psychiatrists advised women to go off it initially. But, she explained, the differences between their thinking made sense. Since the women remained under their psychiatrists’ care, if the psychiatrists prescribed medication and the babies were born with birth defects, the psychiatrists were at risk for being liable. The ob-gyns were not. From the ob-gyn perspective, the psychiatrists in fact had little to risk because the ob-gyns knew they were delivering healthy babies with mothers on medication, and saw the distress to the fetus when a mother became psychotic going off her meds. Psychiatrists, who didn’t witness actual prenatal and birth experiences to assuage their thinking, tended to act with caution.
The information from my ob-gyn combined with the grandmothers’ stories left me feeling more helpful about conception and being pregnant while continuing my daily swallow of Trilafon. The possibility of my becoming a biological mother, however, remained a hypothetical issue.
Until a year later. I had finally entered a loving relationship with a man who wanted to marry me and have children. I knew little research had been conducted on anti-psychotic medication and pregnancy, primarily because researchers were reluctant to experiment with human fetuses and also because the number of women on these medications who become pregnant have been relatively few over the years. Still, I tried in earnest to discover what was known. Some studies were done with Haldol and rats, but I found virtually no information for Trilafon or any of the newer anti-psychotics.
When I married and decided to try to have a baby, my own psychiatrist advised me to go off my medication before conceiving and throughout the first trimester. But by then some younger psychiatrists were rethinking that caveat. The new approach believed that the greater risk involved stopping medication. More and more often doctors told me that my age, 40 at the time, was a greater risk for a healthy pregnancy than taking medication. I was elated to have encountered such a mainstream risk factor.
My husband and I decided to try and conceive while I continued to take Trilafon. When, much to our delight, I became pregnant, we faced one more hurdle we hadn’t anticipated. Our genetic counselor raised the possibility that my Trilafon dosage, which was effective with my pre-pregnancy blood levels, might not work when my blood volume increased during the second trimester. Fortunately, my regular dosage continued to work throughout my entire pregnancy and postpartum period.
Growing a baby while taking anti-psychotic medication can be a reality. I have only to hold my two-month-old daughter in my arms to know this is true—and how lucky I am to have benefited from both the serendipity of hearing other women’s experiences and the changing attitudes within the psychiatric community.
Until 1998, the responses I received at the conferences remained remarkably consistent with two replies: 1. Not much research has been done in this area, so not much is known; 2. The conventional wisdom is for women to go off their medications at least from conception until the first trimester when the major organs develop.
Great, I thought, I had finally accepted that I needed to stay on my medication only to find out if I wanted to grow a baby, I’d need to go off it. That thought scared me more than having a baby with birth defects. And it wasn’t just a weekend medication holiday—conceiving could take anywhere from six months to a year. Underneath my question sat relief that I didn’t really have to face the issue.
Then in 1998, I heard something different. I attended a NARSAD conference, asked my question of the panel and received the usual replies. But immediately following the session, three women walked over to speak to me. They all had daughters who were diagnosed with schizophrenia and who had given birth to healthy children. Two of the daughters became pregnant while on medication, and one daughter went off her medication but became psychotic after the baby was born.
Soon after the conference, I discovered that my gynecologist had worked with psychiatric patients on Mellaril or Haldol during her residency. She told me that these patients’ babies had been born healthy. According to my gynecologist, the most difficult pregnancies occurred when women went off their medications. “Being psychotic is more harmful to a fetus than anti-psychotic drugs,” she said.
She went on to explain that there usually was a difference in thinking between the ob-gyns and the psychiatrists—the ob-gyns preferred women to stay on their medication and the psychiatrists advised women to go off it initially. But, she explained, the differences between their thinking made sense. Since the women remained under their psychiatrists’ care, if the psychiatrists prescribed medication and the babies were born with birth defects, the psychiatrists were at risk for being liable. The ob-gyns were not. From the ob-gyn perspective, the psychiatrists in fact had little to risk because the ob-gyns knew they were delivering healthy babies with mothers on medication, and saw the distress to the fetus when a mother became psychotic going off her meds. Psychiatrists, who didn’t witness actual prenatal and birth experiences to assuage their thinking, tended to act with caution.
The information from my ob-gyn combined with the grandmothers’ stories left me feeling more helpful about conception and being pregnant while continuing my daily swallow of Trilafon. The possibility of my becoming a biological mother, however, remained a hypothetical issue.
Until a year later. I had finally entered a loving relationship with a man who wanted to marry me and have children. I knew little research had been conducted on anti-psychotic medication and pregnancy, primarily because researchers were reluctant to experiment with human fetuses and also because the number of women on these medications who become pregnant have been relatively few over the years. Still, I tried in earnest to discover what was known. Some studies were done with Haldol and rats, but I found virtually no information for Trilafon or any of the newer anti-psychotics.
When I married and decided to try to have a baby, my own psychiatrist advised me to go off my medication before conceiving and throughout the first trimester. But by then some younger psychiatrists were rethinking that caveat. The new approach believed that the greater risk involved stopping medication. More and more often doctors told me that my age, 40 at the time, was a greater risk for a healthy pregnancy than taking medication. I was elated to have encountered such a mainstream risk factor.
My husband and I decided to try and conceive while I continued to take Trilafon. When, much to our delight, I became pregnant, we faced one more hurdle we hadn’t anticipated. Our genetic counselor raised the possibility that my Trilafon dosage, which was effective with my pre-pregnancy blood levels, might not work when my blood volume increased during the second trimester. Fortunately, my regular dosage continued to work throughout my entire pregnancy and postpartum period.
Growing a baby while taking anti-psychotic medication can be a reality. I have only to hold my two-month-old daughter in my arms to know this is true—and how lucky I am to have benefited from both the serendipity of hearing other women’s experiences and the changing attitudes within the psychiatric community.
Saturday, September 24, 2011
Conquering Depression
Shock treatment. When I mention to other consumers that I go for shock treatments, also known as electro-convulsive therapy (ECT), the reaction I get is usually negative. They say things like, "Oh you’re going to fry your brain," or "You’re very brave, I would never do that," or "Don’t you worry about memory loss?" Others almost offer condolences with statements like, "Oh how terrible for you." They also recount how other patients looked and felt after ECT when they were in-patients. These responses put me on the defensive. They are not welcome and very hurtful. We need to support each other in whatever treatments work for us. ECT has made a tremendous difference in my life. It lifted me out of severe chronic depression. It worked when nothing else did.
The past two years have been very difficult for me. I was hospitalized five times. I was experiencing crippling bouts of depression. It seemed as if there was a black cloud over my head that I could not get out from under. The dosage of my medication would be increased and the depression would lift somewhat for a few weeks. However, even on the maximum dose of an antidepressant, the depression would come back worse than before. I would start to hear voices and have suicidal thoughts. A stay at the hospital would soon follow.
In the hospital, the medications were changed and again the depression would lift for a few weeks. This past December when I was admitted to the hospital, the staff got very angry at me. They made me feel that it was my own fault that I was so depressed and suicidal. I explained to them that I took my medication exactly as prescribed and was involved with New York City Voices, and the Picnic for Parity Planning Committee. In addition, I was going to the gym three days a week and getting together with friends when I felt up to it. The staff felt that these activities were not enough and upon discharge I was placed in a six week partial day hospital program. I attended the program and the doctors adjusted my medication further still. I felt a little less depressed. After partial day hospital I attended Intensive Psychiatric Rehabilitation Treatment (IPRT). My goal in IPRT was to go back to work, but after a few months I became so depressed that I quit.
In May, I hit rock bottom. The black cloud that is depression took over my life. I started sleeping 12 to 14 hours a day, stopped eating and withdrew from my friends and activities. One day while riding the subway, a voice told me that the world was going to come to an end soon. The voice further explained that since I was a major loser and had no future I should just go home and kill myself. The suicidal thoughts and ideas intensified and my therapist thought I needed to go to the hospital. I did not really want to go back to the hospital, but I knew that I was a danger to myself so I agreed.
This time at the hospital, the staff’s reaction to me was a little different. They realized the medications were not working and a new approach was needed. ECT was suggested and I agreed to it. I had had ECT in December 1995 and it worked. I was depression free for a year. The staff knew this and also recommended that I continue ECT as an outpatient. Despite the stigma surrounding ECT, I was not afraid. Since it had worked before, I hoped and prayed it would work again. I knew that after each treatment I would probably feel a little out of it because of the anesthesia and have a slight headache. That is exactly what happened, so after each treatment I would take Advil and sleep for a few hours. After the third treatment I started to feel a lot better. I had two more treatments and was discharged. After that I started going once a week for ECT as an outpatient. The black cloud of depression had finally lifted.
I went weekly for ECT for six weeks. Now, I go every other week and soon will go only once a month. The only side effects I experience are grogginess and minimal memory loss. The memory loss is only of the hours preceding the treatment. Contrary to popular belief, ECT is not frying my brain or turning me into a zombie. It has turned me into a happy, high functioning person. I am now very involved with New York City Voices as managing editor. I have an active social life and I swim every day. I believe that ECT along with the support of my family and friends is responsible for this.
There is a lot of fear and stigma surrounding ECT that I believe is unwarranted. Granted, in the past before anesthesia and muscle relaxants were used there were a lot of horror stories. But things have changed. The whole procedure is very humane and only takes a few minutes. The ECT procedure is as follows: The patient is given general anesthesia and a muscle relaxant, electrodes are placed on the patient’s forehead and a wave of electricity is transmitted through the patient’s head, causing a seizure.
In an effort to de-stigmatize ECT, I am participating in an educational video the nursing staff at Long Island Jewish-Hillside Hospital is making. In the video, I am not only interviewed about my experience with ECT, but am also filmed having an ECT treatment. The video will be shown to people who are considering ECT. I have become an advocate of ECT because it has worked so well for me. It has lifted my depression and has also been proven to increase the effectiveness of antidepressants. I have been symptom free for over five months. This is a recent record. Other people I have spoken to in the ECT unit waiting room report similar results. Now, I explain to other mental health consumers and non-consumers as well that ECT is not some form of torture. It is humane and very effective.
Thanks to ECT, I have my life back.
The past two years have been very difficult for me. I was hospitalized five times. I was experiencing crippling bouts of depression. It seemed as if there was a black cloud over my head that I could not get out from under. The dosage of my medication would be increased and the depression would lift somewhat for a few weeks. However, even on the maximum dose of an antidepressant, the depression would come back worse than before. I would start to hear voices and have suicidal thoughts. A stay at the hospital would soon follow.
In the hospital, the medications were changed and again the depression would lift for a few weeks. This past December when I was admitted to the hospital, the staff got very angry at me. They made me feel that it was my own fault that I was so depressed and suicidal. I explained to them that I took my medication exactly as prescribed and was involved with New York City Voices, and the Picnic for Parity Planning Committee. In addition, I was going to the gym three days a week and getting together with friends when I felt up to it. The staff felt that these activities were not enough and upon discharge I was placed in a six week partial day hospital program. I attended the program and the doctors adjusted my medication further still. I felt a little less depressed. After partial day hospital I attended Intensive Psychiatric Rehabilitation Treatment (IPRT). My goal in IPRT was to go back to work, but after a few months I became so depressed that I quit.
In May, I hit rock bottom. The black cloud that is depression took over my life. I started sleeping 12 to 14 hours a day, stopped eating and withdrew from my friends and activities. One day while riding the subway, a voice told me that the world was going to come to an end soon. The voice further explained that since I was a major loser and had no future I should just go home and kill myself. The suicidal thoughts and ideas intensified and my therapist thought I needed to go to the hospital. I did not really want to go back to the hospital, but I knew that I was a danger to myself so I agreed.
This time at the hospital, the staff’s reaction to me was a little different. They realized the medications were not working and a new approach was needed. ECT was suggested and I agreed to it. I had had ECT in December 1995 and it worked. I was depression free for a year. The staff knew this and also recommended that I continue ECT as an outpatient. Despite the stigma surrounding ECT, I was not afraid. Since it had worked before, I hoped and prayed it would work again. I knew that after each treatment I would probably feel a little out of it because of the anesthesia and have a slight headache. That is exactly what happened, so after each treatment I would take Advil and sleep for a few hours. After the third treatment I started to feel a lot better. I had two more treatments and was discharged. After that I started going once a week for ECT as an outpatient. The black cloud of depression had finally lifted.
I went weekly for ECT for six weeks. Now, I go every other week and soon will go only once a month. The only side effects I experience are grogginess and minimal memory loss. The memory loss is only of the hours preceding the treatment. Contrary to popular belief, ECT is not frying my brain or turning me into a zombie. It has turned me into a happy, high functioning person. I am now very involved with New York City Voices as managing editor. I have an active social life and I swim every day. I believe that ECT along with the support of my family and friends is responsible for this.
There is a lot of fear and stigma surrounding ECT that I believe is unwarranted. Granted, in the past before anesthesia and muscle relaxants were used there were a lot of horror stories. But things have changed. The whole procedure is very humane and only takes a few minutes. The ECT procedure is as follows: The patient is given general anesthesia and a muscle relaxant, electrodes are placed on the patient’s forehead and a wave of electricity is transmitted through the patient’s head, causing a seizure.
In an effort to de-stigmatize ECT, I am participating in an educational video the nursing staff at Long Island Jewish-Hillside Hospital is making. In the video, I am not only interviewed about my experience with ECT, but am also filmed having an ECT treatment. The video will be shown to people who are considering ECT. I have become an advocate of ECT because it has worked so well for me. It has lifted my depression and has also been proven to increase the effectiveness of antidepressants. I have been symptom free for over five months. This is a recent record. Other people I have spoken to in the ECT unit waiting room report similar results. Now, I explain to other mental health consumers and non-consumers as well that ECT is not some form of torture. It is humane and very effective.
Thanks to ECT, I have my life back.
Sunday, September 18, 2011
Poetry : The Primal Scream
The Primal Scream
...sometimes it is good
to let the baby sparrow die
so a new day can hatch
laughter died when it was too afraid to live
but even when fear took it
to the edge of a cliff
it clung to a broken cloud
by threads of itself
when the quagmire of troubled youth
combined with Einstein logic
it formed a feeble waif,
jumbled, kaleidoscoped, hardened and trapped
between carousels, pony tails,
and the grown-up on the other side
when the median line grew crooked and thick
curtains turned to walls
and walls into graves
but the "I" still breathed and clawed with passion
when I held the verdict of "yes" versus "no"
in my etherized hands
I knew
that born-again laughter was only as far away
as the "I" will push it.
...sometimes it is good
to let the baby sparrow die
so a new day can hatch
laughter died when it was too afraid to live
but even when fear took it
to the edge of a cliff
it clung to a broken cloud
by threads of itself
when the quagmire of troubled youth
combined with Einstein logic
it formed a feeble waif,
jumbled, kaleidoscoped, hardened and trapped
between carousels, pony tails,
and the grown-up on the other side
when the median line grew crooked and thick
curtains turned to walls
and walls into graves
but the "I" still breathed and clawed with passion
when I held the verdict of "yes" versus "no"
in my etherized hands
I knew
that born-again laughter was only as far away
as the "I" will push it.
Thursday, September 15, 2011
Out to Prove Them Wrong
For the past year myself and others have been advocating for the housing for mentally ill adults with children. I've been told that dream will come true with funding from Mental Health. Up until now Mental Health has only provided housing for single adults only. Maybe their reasoning for this is that once a parent is stigmatized with being mentally disabled, someone figured we never would ever again be capable of taking care of our children.
I have two sons who spent years in foster care because no one believed or will ever believe that I am capable of taking care of my sons again. I'm out to prove them wrong. Even my own sister fought against the notion of me ever taking back my boys. They are now 18 and 20 years old, learning disabled and living with me in a studio apartment. I've been told that I took them back for selfish and monetary reasons since they both have SSI. But who knows better the pain of separation between mother and child?
I don't know my children anymore and they consider me someone not to be trusted or respected, having those notions reinforced by professionals and family. The stigma comes from those who don't believe the mentally ill will ever get better or be capable of doing anything more.
I'm proof otherwise. Yes, I still have issues. I'm still somewhat depressed, but I work part-time at P.A.L.S., a peer advocacy group on Staten Island. I'm somewhat active in politics, in church and in my life and I sing in the church choir. I may not be a successful CEO of a company, but I still am a success compared to what I was like a few years back and I have the potential for doing much, much more for myself, my family and others.
Despite those who stigmatize us or stare down at us in disgust, we are what we are. What the heck is normal anyway? Normal is boring. Normal doesn't make a difference. It conforms to society rather than reshapes it.
Mental illness is not necessarily a handicap. It opens doors of opportunity and hope. We can and will be a success if people truly support us, have patience and take us seriously. Life can be great for people like us, so don't give up in spite of ourselves or others!
I have two sons who spent years in foster care because no one believed or will ever believe that I am capable of taking care of my sons again. I'm out to prove them wrong. Even my own sister fought against the notion of me ever taking back my boys. They are now 18 and 20 years old, learning disabled and living with me in a studio apartment. I've been told that I took them back for selfish and monetary reasons since they both have SSI. But who knows better the pain of separation between mother and child?
I don't know my children anymore and they consider me someone not to be trusted or respected, having those notions reinforced by professionals and family. The stigma comes from those who don't believe the mentally ill will ever get better or be capable of doing anything more.
I'm proof otherwise. Yes, I still have issues. I'm still somewhat depressed, but I work part-time at P.A.L.S., a peer advocacy group on Staten Island. I'm somewhat active in politics, in church and in my life and I sing in the church choir. I may not be a successful CEO of a company, but I still am a success compared to what I was like a few years back and I have the potential for doing much, much more for myself, my family and others.
Despite those who stigmatize us or stare down at us in disgust, we are what we are. What the heck is normal anyway? Normal is boring. Normal doesn't make a difference. It conforms to society rather than reshapes it.
Mental illness is not necessarily a handicap. It opens doors of opportunity and hope. We can and will be a success if people truly support us, have patience and take us seriously. Life can be great for people like us, so don't give up in spite of ourselves or others!
Wednesday, September 14, 2011
When Going Back to School is Not Going On
September’s here. It’s back to school time for children and teens across the country. But for many, a return to school is an instigator of fear. For as long as she can remember, Holly * has been shy.
"When my parents wanted me to start pre-school I didn’t want to go," says Holly, age 20. "From pre-school through most of first grade I felt so nervous before going to school. I couldn’t eat breakfast. I felt physically sick."
Holly is like many children who suffer from school phobia, or school refusal, which affects one percent of school aged children. School phobia relates to the larger problems of separation anxiety and social phobias which involve extreme, incapacitating discomfort in social situations.
"My parents made me go to school," continues Holly. "But I didn’t do the work. I wouldn’t even talk. Eventually my mom took me to the doctor. He said I was extremely shy. He told us I would grow out of it."
Holly’s experience typifies the most recent findings on shyness. Increasingly, research suggests that infants can inherit shyness just as they might inherit blue eyes or red hair. In fact, from more than two decades of research, Harvard child psychologist Jerome Kagan found that 15 percent of infants moved their arms and legs and cried when shown a new person. Kagan’s "inhibited babies" are now teens and many are extremely shy and anxious about socializing.
To get really technical, brain wave studies show that for very shy kids, excess right-brain activity develops in the amygdala, a part of the brain involved in fear and anxiety. If a shy child’s amygdala is easily overwhelmed, the child might make up for it by avoiding stressful social situations.
"It was so painful for me to speak in class," says Holly. "My participation was so bad that my teachers didn’t know if I had learned anything and they planned to fail me. Years later my mother shared why I passed the class. Without my knowing, she tape recorded me saying my ABC’s and counting at home and then played the tapes for my teachers. They knew I had learned so they passed me."
Other factors like language point to the complexity associated with shyness. Holly’s bilingual in Polish and English. She frequently spoke Polish at home with her grandmother, but English was the only language spoken at school. Although Holly continued to be afraid of speaking in school, she had no problem conversing at home in either Polish or English. Selective mutism is an inability to speak in social situations where one is expected to speak, while being able to speak in others. Perhaps Holly’s social phobia was due to a combination of anxiety, shyness, and choice of language spoken in the diverse worlds of school and home.
Holly is now a college student. While her shyness has improved, it continues to be her primary academic difficulty. "I can participate, but not without going through intense feelings of nervousness and anxiety."
Unlike her pediatrician’s prediction, Holly did not "grow out" of her shyness. While she is a successful college student, her experience raises the question of what we can do for children who suffer from this possibly overwhelming syndrome.
Michael, now 14, was a sociable child until about age 10, when he started a new school. "I never said a word the first day of class," says Michael. "And I stopped participating. I thought if I didn’t act interested in my classes, the cool, older kids wouldn’t pick on me."
"Suddenly my son was off in a little world by himself," says Claudia, Michael’s mother. "His grades began to drop. He wouldn’t talk in class. He just wasn’t interested in school. And he wouldn’t talk about it. Finally I told him if he didn’t tell me what was going on, I couldn’t help. That’s when he said he was getting pushed around by other kids."
While only 15 percent of people are born with the tendency to be shy, 50 percent say they feel shy, indicating that environment also shapes the shy child. Certainly Michael’s experience attests to this fact. "The kids pushed and assaulted me," he says quietly, lowering his eyes. "I was afraid to tell the teachers, because then the kids would hurt me even more."
Dr. Philip Zimbardo, renown psychologist at Stanford University, speaks about shyness: "Shyness may range from the common awkwardness felt entering a new social situation to the incapacitating phobia of people and inhibition to interact with others. Some shyness is inherited, but most of it is learned from negative transactions with others or imagined social failures and rejection. Shyness seems to be on the increase in countries such as the United States, perhaps due to reliance on electronic technology that is making people socially passive and substituting Virtual Reality for Face to Face Reality."
While there are no easy answers, there are options. Jerome Kagan says that often, inhibited babies become less so over time. Changing environments that promote shyness and anxiety is another strategy. Soon after Michael’s disclosure, his mother switched schools. "My Michael came back," she said. "He became more sociable and his grades gradually increased. The change was positive. He had more friends and it was a safer environment." Getting kids back to school has been shown to be the most important factor in combating school phobia.
Now in high school, Michael feels relieved. He’s talking in class, showing his knowledge, and knows there are good kids around. His message to New York City kids is, "Don’t make the negative bigger than it is, look for the positive."
His mother follows: "Talk to your kids. I think it is so important to communicate with your child and have your child communicate with you. Parenting is the starting point to the social aspect of your child’s life. Ask why your child is shy. Ask why your child can’t make friends."
"When my parents wanted me to start pre-school I didn’t want to go," says Holly, age 20. "From pre-school through most of first grade I felt so nervous before going to school. I couldn’t eat breakfast. I felt physically sick."
Holly is like many children who suffer from school phobia, or school refusal, which affects one percent of school aged children. School phobia relates to the larger problems of separation anxiety and social phobias which involve extreme, incapacitating discomfort in social situations.
"My parents made me go to school," continues Holly. "But I didn’t do the work. I wouldn’t even talk. Eventually my mom took me to the doctor. He said I was extremely shy. He told us I would grow out of it."
Holly’s experience typifies the most recent findings on shyness. Increasingly, research suggests that infants can inherit shyness just as they might inherit blue eyes or red hair. In fact, from more than two decades of research, Harvard child psychologist Jerome Kagan found that 15 percent of infants moved their arms and legs and cried when shown a new person. Kagan’s "inhibited babies" are now teens and many are extremely shy and anxious about socializing.
To get really technical, brain wave studies show that for very shy kids, excess right-brain activity develops in the amygdala, a part of the brain involved in fear and anxiety. If a shy child’s amygdala is easily overwhelmed, the child might make up for it by avoiding stressful social situations.
"It was so painful for me to speak in class," says Holly. "My participation was so bad that my teachers didn’t know if I had learned anything and they planned to fail me. Years later my mother shared why I passed the class. Without my knowing, she tape recorded me saying my ABC’s and counting at home and then played the tapes for my teachers. They knew I had learned so they passed me."
Other factors like language point to the complexity associated with shyness. Holly’s bilingual in Polish and English. She frequently spoke Polish at home with her grandmother, but English was the only language spoken at school. Although Holly continued to be afraid of speaking in school, she had no problem conversing at home in either Polish or English. Selective mutism is an inability to speak in social situations where one is expected to speak, while being able to speak in others. Perhaps Holly’s social phobia was due to a combination of anxiety, shyness, and choice of language spoken in the diverse worlds of school and home.
Holly is now a college student. While her shyness has improved, it continues to be her primary academic difficulty. "I can participate, but not without going through intense feelings of nervousness and anxiety."
Unlike her pediatrician’s prediction, Holly did not "grow out" of her shyness. While she is a successful college student, her experience raises the question of what we can do for children who suffer from this possibly overwhelming syndrome.
Michael, now 14, was a sociable child until about age 10, when he started a new school. "I never said a word the first day of class," says Michael. "And I stopped participating. I thought if I didn’t act interested in my classes, the cool, older kids wouldn’t pick on me."
"Suddenly my son was off in a little world by himself," says Claudia, Michael’s mother. "His grades began to drop. He wouldn’t talk in class. He just wasn’t interested in school. And he wouldn’t talk about it. Finally I told him if he didn’t tell me what was going on, I couldn’t help. That’s when he said he was getting pushed around by other kids."
While only 15 percent of people are born with the tendency to be shy, 50 percent say they feel shy, indicating that environment also shapes the shy child. Certainly Michael’s experience attests to this fact. "The kids pushed and assaulted me," he says quietly, lowering his eyes. "I was afraid to tell the teachers, because then the kids would hurt me even more."
Dr. Philip Zimbardo, renown psychologist at Stanford University, speaks about shyness: "Shyness may range from the common awkwardness felt entering a new social situation to the incapacitating phobia of people and inhibition to interact with others. Some shyness is inherited, but most of it is learned from negative transactions with others or imagined social failures and rejection. Shyness seems to be on the increase in countries such as the United States, perhaps due to reliance on electronic technology that is making people socially passive and substituting Virtual Reality for Face to Face Reality."
While there are no easy answers, there are options. Jerome Kagan says that often, inhibited babies become less so over time. Changing environments that promote shyness and anxiety is another strategy. Soon after Michael’s disclosure, his mother switched schools. "My Michael came back," she said. "He became more sociable and his grades gradually increased. The change was positive. He had more friends and it was a safer environment." Getting kids back to school has been shown to be the most important factor in combating school phobia.
Now in high school, Michael feels relieved. He’s talking in class, showing his knowledge, and knows there are good kids around. His message to New York City kids is, "Don’t make the negative bigger than it is, look for the positive."
His mother follows: "Talk to your kids. I think it is so important to communicate with your child and have your child communicate with you. Parenting is the starting point to the social aspect of your child’s life. Ask why your child is shy. Ask why your child can’t make friends."
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