Young Man Interrupted

Young Man Interrupted

By Bob

How Mental Illness Detoured My Extraordinary Education/Career

I was born into a family of seven in Minnesota 60 years ago, then moved to Pennsylvania in 1964 where I developed many friendships of all ages over the years. I attended high school in a Pittsburgh suburb and excelled in both academia, sports and extracurricular activities. Upon graduation I was accepted at Yale, Dartmouth, Princeton and Notre Dame, to name a few. I chose Princeton.

My family was not wealthy and so I needed to work on campus and take out quite a few loans in order to matriculate. I did have a partial scholarship, but since my four sisters and I were born within five years of each other, we were all in universities simultaneously, which caused an extreme financial burden on the family. 

I also played sports and majored in English Literature. My freshman year I lettered in both football and crew. My grades were not good, as I was stretched pretty thin and also was experimenting with grass. And I had a required withdrawal at the end of my freshman year.

With the help of my dad I got a job on the Great Lakes as a Merchant Marine, which paid well enough for me to return to Princeton after another lapse. I was still smoking grass and began smoking cigarettes, too. It was the 1970s and my hair was really long. While out of school I waited anxiously for my draft number. The Vietnam war was still waging. Luckily my number was high. 

I returned to Princeton University in New Jersey and did better in school, quit football but still rowed Crew which was very strenuous. I also joined Tower Club and started drinking a lot there. The legal age was lowered to 18 while I attended, much to my detriment. I had a girl friend I professed to love who was a little older than me and was going to Rutgers after undergrad work at Vassar.

My Junior year I was still rowing crew and again doing poorly in classes. During this time my mom was dying of cancer and my sibs were still in college. My dad wanted me to withdraw from the school I loved. Plus I had marriage plans. I got a case of poison ivy while working a summer job on campus and was treated with cortical steroids which I was allergic to. That, the drinking, and use of grass and the pressure caused me to have my first breakdown. I went into convulsions. My father came in from Pennsylvania and he and my girlfriend drove me back to Pittsburgh, since I would not be allowed on a flight being incoherent and so debilitated from the spasms. I remember lying on the back floor of my girlfriend's car in agony as my dad drove us back to Pittsburgh; it felt like my brain was on fire and lit up like a klieg light.

I ended up at Western Pennsylvania Institute and Clinic (WPIC) and was diagnosed with schizophrenia. My current diagnosis is schizo-affective disorder. I have been hospitalized some 20 times over the years, even in state institutions such as Mayview.

My mother died after I left Princeton. I was heavily in debt and defaulted on my loans. Years later, through perseverance, I paid them back with interest, established credit and worked at many different jobs despite having additional breakdowns. My family really didn't help me out at all during that time. Not one of my siblings visited while I was hospitalized. They all are married with happy existences.

At the present time, I am happy with a girlfriend and two cats which are like our children. My family is more accepting of me now that I am well. I gave up drinking years ago as well as smoking. I went back to night school at The University of Pittsburgh and graduated with Honors with a degree in the Humanities, a major in English and minor in Philosophy, while working full time. None of my sibs came to my graduation ceremonies.

My dad died too young, just after retiring.

Although now I enjoy fishing with friends, playing board games, cats, pottery and poker, cooking and am pretty much a homebody, I was always underemployed, and often worked for minimum wage. Now, I am on disability for my chronic illness. My last hospitalization was two years ago.

It seems the medicines just fail to work at some point, but I know my symptoms and generally go in voluntarily. My current medications are Saphris and Depakote. I see a psychiatrist regularly every three months.

Landmark Settlement for New York City Adult Home Residents

Landmark Settlement for New York City Adult Home Residents
By Jota Borgmann, Senior Staff Attorney, MFY Legal Services, Inc.
State to Fund At Least 2,000 Units of Supported Housing for Residents
On July 23, adult home residents in New York City reached a landmark settlement with the State of New York. The settlement ensures that thousands of residents of 23 large adult homes (see sidebar) will have the opportunity to live in their own homes with the services they need to succeed and be part of their communities.
The settlement follows nearly a decade of litigation in a related case, Disability Advocates, Inc. v. Paterson. The new case, O’Toole v. Cuomo, was brought by residents of three adult homes on behalf of approximately 4,000 residents citywide. The plaintiffs alleged that New York State unnecessarily segregates people with mental illness in adult homes in violation of the Americans with Disabilities Act (ADA). “This case puts a face on people with mental illnesses and our struggle to be integrated back into the community at large,” said Plaintiff Steven Farrell, a resident of Oceanview Manor Home for Adults in Brooklyn. The settlement offers adult home residents “freedom and the ability to grow,” said Plaintiff Raymond O’Toole.
The State agreed to fund at least 2,000 units of supported housing for adult home residents, and more if needed. Every adult home resident who qualifies will have the choice to move to community housing within five years. Supported housing is an apartment in the community that comes with rent assistance and support services. Residents can live alone or with roommates if they choose. The support services may include visits from case managers or help with moving, healthcare, shopping, medication, or personal care.  
Many adult home residents are excited about finally having the opportunity to move out of adult homes and have more freedom and choice in their day-to-day lives. “I’m thrilled about this settlement,” said Plaintiff Ilona Spiegel. “At my adult home, they don’t do anything to inspire you or encourage you to move forward. I know how to take care of myself. I want to work my way back to independence.”
MFY Legal Services, Inc. represents the adult home residents with co-counsel from Disability Rights New York, the Bazelon Center for Mental Health Law, New York Lawyers for the Public Interest, Urban Justice Center and Paul, Weiss, Rifkind, Wharton & Garrison, LLP.
Adult home residents in New York City who have questions about the settlement may call MFY toll-free at (877) 417-2427.

[Sidebar:]
The settlement will affect residents with serious mental illness living in these 23 adult homes:
Belle Harbor Manor
Brooklyn Adult Care Center
Central Assisted Living, LLC
Elm York LLC
Garden of Eden Home
Harbor Terrace Adult Home and Assisted Living
Kings Adult Care Center
Lakeside Manor Home for Adults
Mermaid Manor Home for Adults
New Gloria's Manor Home for Adults
New Haven Manor
Oceanview Manor Home for Adults
Park Inn Home
Parkview Home for Adults
Queens Adult Care Center
Riverdale Manor Home for Adults
Rockaway Manor HFA
S.S. Cosmas and Damian Adult Home
Sanford Home
Seaview Manor, LLC
Surf Manor Home for Adults
Surfside Manor Home for Adults
Wavecrest Home for Adults

“I Have an Illness...Shit!”

Editor-At-Large/As I See It
By Marvin Spieler
“I Have an Illness...Shit!”
I came down with mental illness when I was 16 years of age. It wasn’t until age 36 that I learned how to and want to break out of the revolving door. Twenty years lost. I couldn’t develop a real career. I wanted to be an urban planner or a high school teacher. I became neither. I was a professional mental patient. That was my career.
So many hospitals. I was advised to write The Patient’s Guide to Psychiatric Hospitals. I thought about it and said no. Living it was one thing, writing about it would have been harder.
You can fight the revolving door of hospitalizations. I fight my illness every day and WIN!  It’s not easy. At times I’d like my three meals a day handed to me by joining the chow line at a psychiatric hospital. That’s the easy way. NO! NO! NO!  I fight. What do I do to stay out? I’ll tell you: Here goes!
I don’t like to wash up and shave. But I do it! It’s a pain in the ass. I don’t want to look like a bum. I then feel self-conscious as a result. People look at you strangely. What are they thinking about me? So I shave as often as needed!
I don’t like going grocery shopping, cooking, and washing dishes after every meal, every day so I can eat! But I do it.
I don’t like taking my psych meds twice a day. I don’t even like setting up my week’s supply of meds in my pill containers! Why? Because it reminds me of my god-damned illness!  An illness the public fears. They think we’re violent. In reality, I can’t fight myself out of a paper bag! Violent? Me? That’s a real joke! Yet, if I tell a potential friend I have mental illness, guess what? He or she may not return my calls or see me again! Now that’s an illness I have to live with! They may start to fear me. They may not want to turn their backs on me for fear that I may slug them. My friends are limited as a result. I cherish the ones I have.
Because of my illness, I never had a good paying job. Why? I feared success! Success made me feel uncomfortable. Tension, anxiety would result. I’m shy. I’m not a people person. In this day and age, you’ve got to be a team player. I’d rather work alone. You need to be a “people person.” I’m not. I don’t interact as well as I would like.
Look, it took most of my work-a-day-life to overcome fear of success. By the time I conquered this problem, I was too old to get a real paying job.
You may say he means fear of failure. Most people who don’t succeed have this. Not me. Success was always mine to a point. Then I’d quit, get fired, or become psychotic.
Yes, the illness gives me limitations that hurt  me! Not someone else. I’m feared. Ha!
Housing! Tell me about housing! I had a subsidized apartment till recently. What happened? The rent kept on going up but the subsidy didn’t. I had to move in with a friend. I couldn’t afford to live even in Newark, New Jersey! My check isn’t enough to pay rent, food, and other essentials.
Depending on your personal viewpoint, the above article may sound negative. However, to me I have a great deal of accomplishments. Whether I like taking my meds or not, I take them daily. It is now in excess of twenty-five years on medicines. I call the process being Hospital-Free. A record I’m proud of. As a grown-up, there are certain things you must do to be able to call yourself an adult. I mentioned a few. I’m happy with myself. I became an advocate for mental health. I do think positive usually. Success is no longer a problem. I’m a doer. I’m proud of who I am.
My advice to you is this. Take your meds if prescribed. Develop a support system that works for you. STAY HOSPITAL-FREE. When you feel comfortable with this process, then you’ll go on to achieve your goals in life!

Ward Stories Winter 2014: Poetry

Ward Stories
A column organized by Dan Frey, Interim Poetry Editor
In this edition of Ward Stories I am pleased to present two powerful poems. DeAnn puts the struggle of a single mother to poetry while Chaim shares his experience of love with a fellow consumer/survivor in rhyming verse. Enjoy.

First Born Son
By DeAnn
Once a bright promise
Star of our eyes
And hearts,
His mind broke,
Into disorder.
The cold hard stone
Of sorrow
Dropped,
Sending rings
Of disappointment
Ever outward.

His father,
My husband,
Died years ago,
Broken-hearted.
His sister
My daughter has
Stood long in grief’s shadow,
I ask for her forgiveness.

Blinded with pain
I prayed
For God to pull me
From the smoke and ash,
I prayed for Him
To wash away the grime
Of sorrowful days.
I didn’t even see that
He was there all along,
Patiently holding me up
Waiting to breathe
Hope’s holy light
Into my darkest hours.


I Will Stay By You Always
By Chaim
Your depression, not unlike a heavy fog.
Like the stench and gloom of industrial smog.
We both just want it to go away.
And you are too sick to hope, too tired to pray.

They give you therapy and pills to ease the pain.
But the gloom and sadness still remains.

Maybe it is written in fate.
Your feelings of sadness, which we both hate.

Maybe it was festering in the womb, before you were born.
This creature called depression, so relentless and strong.

But despite the beast that keeps you in bed.
Crying dry tears feeling half dead.

My love, I just want you to know.
That I too feel powerless and hate it so!

But my love, don't feel that you must smile.
Or I will pick myself up and leave after a while.

Yes it's got to get better, just you wait and see
Yes that's the way, it's got to be

But Heaven forbid, if these feelings never leave?
My love, you must believe

I'll stay with you always, through thick and thin
Regardless of what emotional shape you are in

For our love is beyond space and time
I am forever yours and you are eternally mine

A Death and A Life

A Death and A Life
By Steve
It is July 4, 2013. I am a consumer on my way this Independence Day to visit my mother in a nursing facility on Long Island. On the train from Brooklyn, an inebriated young man is yelling out the same dulling message: "I can't wait to get those burgers on the grill. I can't wait to taste the chicken. I can almost smell the grill charcoal. Those sausages are about ready to pop." I am not at a barbecue. As with all too many consumers, I stand or sit alone, except for a few acquaintances, who are similarly encumbered with managing their daily existences.
I approach my mother at the nursing home quietly, almost as a burglar, stealthily, but not wanting to rob her—not to disturb her: she is listing to the left side in her steel-bound contrivance of a wheelchair. This lady, who could tell me and my sisters that one day life would be better, has now arrived at a place belying her wishes and predilections.
She has just turned 86, suffering from Alzheimer's disease, at the nursing facility where she has lived since my middle sister and her husband stopped caring for her because it became too hard to move her from bedroom to bathroom to television and back again. My sister had also nursed my father through his Alzheimer's ordeal, until he, like my mother, had to seek hospital attention.
Now my mother calls home this sad repository of lost and wounded souls like herself. As a consumer, I have no substantial income, no home, no security to offer her, haunting and hurting me all the more, as I see her now, defenseless and utterly alone!
The orderly asks me if I want to feed my mother. I measure out spoonfuls and forkfuls of nourishment for her as I'm sure she did for me 60 years ago when I was an infant, but she stops eating. I call a nurse to help me, but my mother, after opening her eyes to respond to "Ethel, are you OK?", the eyes shut once more.
After the nurse withdraws, I grasp the long textured, firm, elongated fingers of my mother's right hand. Then, I massage her shoulder, telling her "It's going to be OK." Unfortunately, I don't really believe this, but continue talking to her, reassuring her I'm working, which she never has believed. As the 1950s to 1970s muzak continues to blare ferociously through the cavernous lunch/meeting room, I stay entwined with my mother for two hours, maybe less, maybe more...for two hours. Eventually, I leave the nursing facility for home as a defeated warrior.
Back with my mother for what might be a final visit, I find myself at Long Island Jewish Hospital on the eastern end of Queens that slips into western Nassau County. I stroke her black/silver-streaked, sweat-soaked hair. A grotesque plastic mask stretches over her face. An insidious blue-ribbed tube futilely feeds my mother's almost lifeless body. God is trying to take her life, to grant her the only peace she has ever known in her time on this planet.
I'm telling her over and over again that I love her. Even though I'm now an adult, I try to erase the terror, the fear of abandonment of the little boy who never heard any of this love from my mother, or not much. I only heard I was unable to cope successfully with the world. Now my mother faces a long repose. She, who as a teenager, lost her mother, is alone with her son, a consumer who can't help her, as she felt defeated to help him when he was growing up. Thus, we are both cast adrift to find our way home.

Madness Network News Revisited

Madness Network News Revisited
By David Gonzalez, Activist
An Historic and Unprecedented Opportunity
Advocacy is both paramount and essential to human dignity and survival. There are those who advocate for others or believe that they are advocates for others who are unable to advocate for themselves and then there are those who tenaciously and vigorously advocate for themselves. Fortunately, I have almost always been of the latter, although I’m not ashamed to admit that there have also been times when I have desperately needed others to advocate for me.
Then there is activism. Wiki.answers.com defines activism: “Activism is similar to advocacy but where it differs is really the heart of activism. Activism usually involves more action that is direct in addressing issues, in a community for example. Activism is often done by people from within the effected community whereas advocacy is done both by people from within and without the effected communities.”
“Acting on my vision” my first act of activism as a mental health recipient was writing an article for a former NYC Department of Mental Hygiene's Office of Consumer Affair's newsletter in 1999 titled “You Have the Right to Remain Silent.” That was nearly 15 years ago. And while I have also been an unrelenting advocate for others on many occasions, my motivating passion for advocacy was affecting change through activism. But then unexpectedly, without warning, tragedy struck and my health took a devastating turn for the worse. As a result of my deteriorating condition I was physically disabled, unable to sustain full-time employment, and compelled to apply for disability benefits. My driving passion for activism had come to a sudden and screeching halt.
Spending the next couple of years attempting to regain my health and restore my passion to live, I had ample time to read and browse through saved copies of Madness Network News which my close friend and mentor, Ron Schraiber, had stored away in his archives. Ron has always been a major part of my support network and an unending source of information and inspiration for me. I was amazed by the list of authors who had penned articles for Madness Network News. They were highly respected pioneers in the “consumer empowerment” movement such as: Leonard Roy Frank (The History of Shock Treatment), Judi Chamberlin (On Our Own), Howie the Harp and Sally Zinman (Reaching Across: Mental Health Clients Helping Each Other) and a litany of other well-known activists and pioneers too long to list here.
To my dismay I discovered that this publication was no longer available to the general public, and so I sought out Leonard Roy Frank to explore the possibility of making Madness Network News once again available to the public in textbook format. I was elated and overjoyed when Leonard expressed interest and even supplied the missing MNN newspapers that I did not have access to. To my amazement, my passion for activism reignited. I purchased all the necessary hardware and software and I painstakingly began to scan, crop and resize every single page of Madness Network News. And as a direct result of Leonard and Ron’s unwavering support and assistance, the first copy of MNN in textbook format (which consists of the full six issues of Volume #4) was printed in October and is currently available. The remaining seven volumes, which contain all the remaining MNN issues, are ready for printing and publication. MNN truly embodied the essence of “nothing about us without us.” (If you would like to take advantage of this unique opportunity to purchase any of these volumes and to own a piece of our history please contact: MadnessNetworkNews@gmail.com)
The introduction to Madness Network News Volume#4 reads: “Madness Network News (MNN) began as a San Francisco Bay area newsletter in 1972 and then evolved into a quarterly newspaper whose readership extended to a national as well as an international level. MNN became, in essence, the voice and networking center for the “mental patient” liberation movement in the United States, unapologetically advocating for the full human dignity, self-expression and civil rights of people diagnosed and labeled as mentally ill. As a quarterly journal, Madness Network News published personal experiences, creative writing, art, political theory, and factual reporting from the point of view of people who had been on the receiving end of psychiatric treatment and who now found themselves treated as social pariahs, living in oppressive conditions and denied even the most basic aspects of personal choice and self-determination. Known for its use of humor and sense of irony, MNN wrote on its masthead that it covered All the Fits That's News to Print. Ceasing publication in 1986, Madness Network News remains an invaluable historical and primary source material that continues to elucidate the concerns and lives of people diagnosed and labeled as mentally ill both in the past and today.”

NYC Voices Accepts Media Award from the Mental Health Association of New York State

NYC Voices Accepts Media Award from the Mental Health Association of New York State

By Sharon Goldberg

NYC Voices has had the great honor of being presented with the 2013 Mental Health Print Media Award by the Mental Health Association of New York State (MHANYS). The award was presented by the nominee, Joseph V. Lemmond, Jr., a mental health consumer, advocate and MHANYS board member to Marvin Spieler, Business Manager and Editor-at-Large of NYC Voices.

Marvin graciously accepted the award with a four minute speech acknowledging our fine publication from its beginnings with founder Ken Steele through today. Marvin stated, “We are a mental health advocacy publication. We fight the good fight with our inspiring articles on mental health issues, both positive and negative. We show that recovery is possible. We offer hope to all consumers.”

We were in good company. In all, seven awards were presented. Among the recipients was Amanda Greenspan, who recently graduated from Fordham University School of Social Work and received the Edna Aims Scholarship Award. Robert Myers, PhD, Senior Deputy Commissioner of New York State's Office of Mental Health received an award for his dedication to mental health. Kimberly Williams of the Mental Health Association of New York City rightly received the Staff Leadership Award for her dedication to helping people with mental illnesses. We congratulate all of the award recipients from the Mental Health Association in NYS.

The event was well received by over one hundred guests at the Marriott Albany Hotel.

The award itself is a replica of the Mental Health Association's bell. The bell was formed from the discarded chains and shackles of ex-patients from asylums across the country when these devices were used to bind the wrists and ankles of persons with mental illnesses. The inscription on the bell reads, “Cast from shackles which bind them, this bell shall ring out hope for the mentally ill and victory over mental illness.”

Marvin Spieler and I attended the conference the next morning. The theme of the conference was “Fitting The Pieces Together.”

Big changes are on the horizon in the delivery of behavioral health services in New York State. In particular, managed care will play a key role. A newly formed New York State Justice Center will be instrumental in seeing that people with special needs (in this case mentally ill) are protected from abuse, neglect and mistreatment. There will be a move away from hospitalizations to community-based services for the mentally ill. 

The most significant changes will be for the integration of physical health and mental health services. We will move away from an exclusive medical model known as the qualified plan to a health and recovery plan known as HARP. Health Homes are being established to integrate physical health and mental health. This will change the continuity of care for home and community-based services. We will switch from a care model plan to a self directed patient care plan. There will be New York State care management for high need patients with both physical and mental health concerns.