Published Author Battles Schizophrenia

By William Jiang, MLS

New York City Voices helped me along the way

New York City Voices was founded by Ken Steele in 1995, 17 years ago. I was recruited by Dan Frey in early 2000, shortly after Ken died and left Dan at the helm of the newspaper. I shared my own personal story of recovery at that point in 2000 with the paper, and now, in 2012, my personal story of recovery continues.

A lot has happened in my life since then. When Dan recruited me I was fresh out of library school with my Masters, and I was excited to work with a newspaperman. The internship at City Voices was a good idea to get some job experience. Dan got me to work as a grant writer, webmaster, advertising manager, and freelance journalist. I parlayed the City Voices experience into my first career position as an adjunct lecturer at Kingsborough Community College as a librarian. The Kingsborough Community College position led to a seven-year position at the prestigious New York State Psychiatric Institute as the chief librarian of their Patient and Family Library. At New York State Psychiatric Institute I wrote my autobiography titled A Schizophrenic Will: A Story of Madness, A Story of Hope, which, recently, has outsold Sylvia Nasar’s A Beautiful Mind on Amazon.com. I am now in the process of returning to university part-time to study German at Hunter College, and to keep myself busy. I am currently tutoring people who seek further knowledge in Spanish, French, math, Photoshop, video editing, and book design.

However, life has not been an easy, straight road. I continue to struggle with clinical depression, physical aches and pains that I have accumulated over the years, as well as the schizophrenia that I have had since 1992. I was lucky to survive 2011 as I had two hospitalizations in November that involved suicidal ideas and urges. In November I welcomed the institutional halls of Columbia Presbyterian in White Plains because in that hospital was a measure of safety. I was afraid of what I might do to myself if let go without a medication regimen that did not work. After the mood stabilizer lithium failed, I was scared that nothing would work. The doctors were going to try Depakote on me. After an empowering conversation with a mental health therapy aide, I convinced my doctors to try me on Saphris or Fanapt as a mood stabilizer. My doctor put me on Saphris as a mild mood stabilizer, and the good news is that in addition to regular exercise, the Saphris seems to be helping me to stabilize my mood.

Another thing that has helped me, over the years, is my power of insight and my ability to fine-tune my medicines, with my doctor’s ok, to keep me out of the hospital and out of trouble. For some odd reason, when I start losing touch with reality, I sense it happening. I am able to take a little more of my antipsychotic, Navane, when this happens, and by using this technique, I have been able to keep myself out of the hospital for many years. This apparent control I have over my medication and neurochemistry has been a blessing for me because I’ve been able to take less of the antipsychotic than otherwise, and I have had the benefit of less sedation than if I were on a consistently higher dose. I feel that I work as a team player with my psychiatrists in my recovery. The game plan is to stay in therapy and keep an eye on my medication so we can beat the unbeatable opponent that is in my head: the schizophrenia. Although, I have not beaten schizophrenia for over 19 years now, neither has my competitor beaten me, and we continue to play the game. I feel I am playing as a worthy opponent against a formidable diagnosis.

My great regret is that I have had few girlfriends over the years and that none of them have stuck. That is the one thing in life that I feel that I am missing right now: a good girlfriend to share the highs and lows, the good times and the bad, in this drama that is life. I know I’ll meet her someday, and the figurative hearth burns with a steady, warm flame.

In the meantime, I work, I hang out with friends, and I study. I salute New York City Voices for their continued role as the oldest, and largest free newspaper for the people of New York City who suffer from the slings and arrows of mental illness.

Note: The author does not suggest that you manage your own medications as he does unless you talk to your psychiatrist and decide together that it is a safe and practical thing to do. As always, the medical advice of your doctor or your pharmacist should be heeded. To contact Will email fishmonger1972@gmail.com.

Ward Stories

A column organized by Jack M. Freedman, Poetry Editor

This edition of Ward Stories features poetry from a couple of sources.  One of those sources is Ted Wainer.  This poem was written during a hospital stay.  Many of us can relate to the sheer boredom that many experience within the confines of a psychiatric ward.  This in turn inspired me to share one of my own pieces.  This is a piece that outlines my current views on the practices of psychiatry.  I have done a lot of self-discovery and now know that personally, I need alternatives in my life for my own treatment.  With that said, I know there may be a lot of people who will not agree with my statements, but I hope that City Voices will outline a wide variety of views on psychiatry as a whole, so with that, I present one of my poems.  I hope you enjoy this edition of Ward Stories, as well as the rest of the paper.

In These Chains of Boredom

by Ted Wainer

To aire, to reap, to sow , to sleep

To sleep within the air so fine.

To leap, to lash between the sheets

To hate the air that glistens through.

Yes glistening through yet not touching it.

Healing hands yet a smile without grace.

Without the grace to heal the hurt

within.

Without the power of empathy to go that last stand.

Yes boredom resides here big time, you know.

And yes Thomas, that’s the way it is.

Today, tomorrow , and possibly in the future it seems.

It leaps, it jumps, it escapes and it hits you.

It kills at times and menaces with the scales

of your mind.

Yet oh those scales so ponder deep.

Pondering deep within the realm of this insane mess.

Yes the insanity keeps me here.

But how sane am I in boredom.

To laugh, to hold, to cajole and to convince.

To try to see the light.

Yes reading away those hours

                         of discontempt.

Holding onto future grains and learning a lot

along the way.

Yes this field of discontempt.

This hallway of horror.

Passing, passing through all this

 nonsense.

As I’m bored , as I sit here writing these passages.

Hoping for salvation, only time heals they say.

I want immediate release, instant gratification.

And so I wait in these chains of boredom.

Prescribe This

by Jack M. Freedman

I'm done with lurking behind

A marmalade bottle

Filled with false miracles

The ties that bind throttle

Therefore it is empirical

To free yourself

From the shackles

And the cackles of doctors

Dictating our treatment

Treating us like children

Kidding us into thinking

The pills we chase with drinking water

Foster recovery.

My discovery

Of myself

Leads me to shelf

All the things I used to know

And let it fall by my feet.

It would defeat me to entreat

Corrupt forces of mind control

Patrolling and enrolling me

Not in the school of hard knocks

But mental cell blocks

With electroshocks forced upon

By pigs carrying glocks.

We want rights without having to demand them

Without day treatment programs

Where brains get programmed like robots,

Reinforcing paranoia

Validating low self-esteem.

We've moved past possessing psyches

Of Phineas,

But can you gauge what the future holds for us?

We've moved past our head structures being analyzed

Past insulin catalyzing seizures

Leisurely knocking us unconscious at will.

The abuse must end

And we must suspend this systemic oppression,

Before all of our rights undergo regression

And receive justice

At the sharp end of the ice pick.
FREUD CAN SUCK THE FAT END OF MY CIGAR!

New York City Voices is Back!

We apologize for the big delay—it’s been at least a year—since we published our last newspaper. There are many reasons why we did not publish. Among them are lack of staff: all of the work falls on the shoulders of one, maybe two people who are also coping with mental health issues; financial problems; and technical difficulties: learning new technologies and coordinating production in a technologically sensible way has always been difficult.

We are back and starting off humbly with a smaller budget and a smaller newspaper. Still, we intend to print on a regular basis while we get our house in order.

Marvin Spieler, Voices’ current general manager, rehired Dan Frey as Editor in Chief. Dan was on hiatus for a while because he had a mental health setback, hospitalizations and so forth. He’s back and in recovery with new wisdom, which is what recovery from relapse can bring to an individual.

Although the economy is having a weak recovery, we hope to raise enough money to continue publication because we know the value of sharing stories and important information within our community. We tried to get information on how our entitlement benefits may be affected considering the status of the economy and the politics in Washington and New York. We all know that mental health is one of the first things to get cut. We plan to continue to seek answers for you and to publish them.

We now have an Internet blog at newyorkcityvoices.blogspot.com and an archive of most of the articles that have ever been published at nycvoices.org. There is a retrospective documentary short that you can see by visiting youtube.com and searching for “videoguynumerouno city voices.”

We are currently seeking a general manager and an advertising director so please write us if you or someone you know would want more information on these positions.

Here’s to a long overdue issue. Thank you for being a loyal reader.

The Eye of the Storm

By Robyn Carrothers

Even tornadoes pass eventually

My life is like a tornado—that strong powerful wind that causes death and destruction. I live in a chaotic situation where my mental illness has taken its toll. It’s a funnel cloud just waiting to touch down and wreak havoc. I just want to be in the eye of the storm.

It was a beautiful day in the city of my mind. I felt the day was peaceful except for the wind. It was a little breezy. Then suddenly, the wind got stronger. “Wow,” said the elderly man. “I never felt wind like this.”

“Sometimes the wind gets stronger than this,” I said

Then the mailman came along. “It’s starting to rain.”

“Ain’t you supposed to be delivering mail?” asked the old man.

My mind was going crazy as the tornado began to swirl. The mailman and the old man began to argue. I’m on the outside with this F3 tornado in my head. It is getting bigger by the minute. Then at that moment came the rain and thunder. I thought I was losing my mind.

The tornado was getting stronger. The old man and the mailman were still arguing in my head. Then it happened. The damage was beginning: depression, seeing and hearing things. This was a F3 tornado.

Then suddenly, there it was: the eye of the tornado, calm and peaceful.

I saw the mailman and the old man. They were calm, no fighting; the serenity of the eye. It was weird that a wind of 200 miles-per-hour had a calm center.

All of a sudden the twister picked up again. The depression came back, along with seeing and hearing things. I grabbed my head. I wanted this tornado to stop. There the wind suddenly stopped. The damage was done: broken relationships, drama and a lot of chaos. The old man and mailman disappeared. Everything was all in my mind, yet I survived. I was able to pick myself up, and go on with life. I looked back and said, “I will be ok.”

Rainbow Heights Club Helped Restore My Soul

By Julie A. Cipolla

It’s important to have a special place to go

8 ½ years ago my life was very different than it is today. I slept 15 to 18 hours a day and saw no one (I live alone and have no family).

I’d been on Social Security Disability for depression and post-traumatic stress disorder for 7 years already. I was not doing anything with my life. I was merely existing in the haze of semi-suicidality so common to people with my diagnosis and family abuse history.

The one bright spot in my life was a monthly group I started and ran for Lesbian, Gay, Bisexual and Transgender (LGBT) people with disabilities, called “Disabilities Who Need Each Other.” The group was held the second Sunday of the month from 2-4 p.m. at the LGBT Center on 13^th Street in New York City.

One day a nice young man attended the group and told us about a club for LGBT folks with mental illness that he worked at as a peer specialist. I was so intrigued by his description of the Club that I decided to go.

I walked into the building at 25 Flatbush Avenue in Brooklyn, saw the sign for Rainbow Heights Club and I went to the 4^th Floor. There I met a smiling young man who introduced himself to me as Christian Huygen the current executive director of the Club.

I was given a tour by the peer specialist who had come to my group that Sunday. I was impressed with what I saw. There was a gorgeous, huge kitchen, a cozy, sunny club room with a huge rainbow flag and couches. There was also a computer room with newly installed Internet access as well as a large art room with a real kiln for firing ceramics. All around the room were pieces of artwork made by club members. “Ah!” I thought, “I am home!” Then there was the day room which I was informed was referred to as the “Gay Room,” by members.

I was handed an application for membership and on it was the following question: “What can you offer the Club?” I was floored! Here I was being asked what I could contribute—I was not to simply be a passive recipient of help from higher-ups who were “wellies.”

So I mentioned my Karate skills (I am a first-degree black belt, acquired before I got sick). I also put down my writing skills, and that I was a good listener.

Then I went to the kitchen where Christian was preparing the 4 o’clock dinner. I was encouraged to participate in preparations, so I put some mild spices into the Black Bean Soup and I felt very happy that I was trusted to add the spices and that my input was wanted.

That day I sat in on a group that was constructing a “Code of Conduct” for the Club. I made some suggestions about the wording which the group adopted into the final version.

Next, I sat in the kitchen and talked with a member who seemed to need a listening ear. We talked for an hour before dinner and resumed the conversation afterwards.

When it was time to leave the Club at the end of the day, I felt so happy because I felt I’d helped somebody and I’d contributed in a meaningful way to the Club. That was on January 28, 2003.

I returned to attend such groups as the Assertiveness Group, where I learned strategies for setting boundaries with people, and expressing my needs. There were (and still are) other groups such as Thoughts and Feelings, Lesbian Group, Art Group, etc.

Eventually, I offered to lead various activity groups at the Rainbow Heights Club and in my 8½ years there, I have variously led the Stitch n Bitch Group, the Writing Group and gave a short course in Karate.

I’ve also served on the Community Advisory Board, I’ve prepared taxes for the Club members, cooked at some of the Club barbecues, and I also took a turn working at Rainbow Heights as a peer specialist, which was very rewarding.

Currently, I’m no longer a peer specialist, but instead I’m a regular member. I’m not leading any groups right now. But I do attend several groups every week, including the Alcohol and Substance Abuse Recovery group because I have an eating disorder which is now in remission.

Today, I no longer sleep 18 hours a day, just 8 or 9. I have a whole host of friends at the Club. We support one another. The staff is outstanding and is very responsive to our needs, whatever they may be at any given moment. Just the other day, before Hurricane Irene blew into town, I asked to sit in the director’s office while the director did some paperwork. Just sitting there with her helped to quell my fears about the impending storm.

Rainbow Heights Club is family to me—it’s my second home. It’s where I go to share all of my tragedies and triumphs. It’s a place where I feel heard and loved and I extend this to the other members—we do this for each other. The staff provides an atmosphere of mutual respect and belonging for us members. And we have a heck of a lot of fun, with Bingo and movie nights, karaoke, birthday parties, open houses and barbecues. We also have outings to such places as the Brooklyn Botanic Gardens.

Yes, my life is radically different and better because I belong to Rainbow Heights Club.

What I Learned From the Psych Out 2011 Conference

By Melissa Farrell

Seeking a new vision for mental health care, I attended the Psych Out 2011 conference at the City University of New York (CUNY)’s Graduate Center in Manhattan on June 21, 2011. The conference was sponsored by the PhD Program in Environmental Psychology at the Graduate School and University Center of CUNY. The main organizer of the conference was Lauren Tenney, along with Dally Sanchez and Eva Dech, and many others.

Robert Whitaker, a journalist, spoke about his monumental book, Anatomy of an Epidemic. Whitaker was critical of modern medication treatments for mental illnesses. Whether you’re for medication or against it or whether you have found some kind of middle ground, Whitaker presented valid data about the subject. Whitaker’s first book on mental illness was Mad In America: Bad Science, Bad Medicine, and the Enduring Mistreatment of the Mentally Ill published in 2001. In it, he presented the history of the mentally ill in this country going back to the nation's beginnings. Whitaker argued that society does not have time for moral treatment. It is much cheaper and more time efficient to use medications even though they are not as effective as we would like to think.

Dr. Philip Sinaikin, through his book, PsychiatryLand provided a raw assessment of the field of psychiatry and recommended that drug therapy be replaced by empathic talk-therapy. He gave us a handout that included the stories of individuals termed “Poor Pete” and “Helpless Bill.” According to Sinaikin, no one tried to get to the root of their problems. Instead they were given medications and sometimes forced to take them against their will. Dr. Sinaikin described PsychiatryLand as a Disney Land, which has been hyped-up as a great place, but in reality is just a hot, overcrowded, noisy and expensive amusement park. Similarly, PsychiatryLand is where millions visit to reap the benefits of a rapidly advancing “brain science” to identify and treat the underlying physical cause of painful emotional conditions. Since we don't know exactly how the brain works, let alone how to fix it, is this not also a case of “image” supplanting “reality?”

I also learned about Soteria House in Alaska, a home-like alternative to hospitalization for people who are newly diagnosed or having their first break. The original Soteria House was created back in the 1970s in California by a psychiatrist named Loren Mosher. He advocated for a home where patients who were suffering from “extreme states” could heal as naturally as possible. The environment was meant to be a safe haven with caring workers who were not trained in the medical model. Research indicated that more patients were able to recover in this model without drugs, though some were not. If a person was not able to recover without drugs, attempts were made to help the person minimize their need for medication. The National Institute for Mental Health (NIMH) eventually withdrew funding for this project possibly because it is cheaper to give someone medication and discharge them then to allow them to heal naturally in this type of setting.

Ann Rider, MSW, CPRP presented and discussed many revolutionary ideas in mental health including the use of “Narrative Therapy.” Narrative Therapy focuses on the stories of people’s lives and is based on the idea that mental health problems arise in social, cultural and political contexts. Each person produces the meaning to their life, so critical for recovery, from the stories that are available in these contexts.

Darby Penney, one of the authors of The Lives They Left Behind: Suitcases From A State Hospital Attic presented a social history of everyday patients in a state hospital and what they went through. It chronicled various individuals’ lives from what their lives were like before and what became of them after being admitted to a state hospital in New York. They were people with careers, ambitions and livelihoods at various points in their lives. These people “fell from grace” as so often happens in the mental health system. I am happy that their stories live on.  

Hopefully, the Psych Out conference will promote the inclusion of alternatives to traditional mental health practice in a realistic and practical way that does more good than harm for patients’ well-being.

Note: Melissa Farrell is an advocate and writer. You can reach her at mfarrell079@aol.com.

Life-Threatening Effects

By Nancy Solomon, Saint Louis University

Mixing supplements, herbs, over-the-counter medications and prescription drugs

People are mixing supplements, herbs and over-the-counter medications and prescription drugs to cure themselves of ills, unaware that they could be making themselves sicker, says George Grossberg, M.D., director of the division of geriatric psychiatry at Saint Louis University.

Dr. Grossberg is about to change all that. He is the co-author of a new book, "The Essential Herb-Drug-Vitamin Interaction Guide," which is a comprehensive listing of what various herbs and supplements do, possible side effects and how they might interact with other medications and foods.

"People think if it doesn't require a prescription, it's got to be safe, and that's not true. There could be life-threatening effects."

Dr. Grossberg first became interested in the topic after a routine six-month visit with a patient he had successfully treated for depression. He had been seeing the patient for four or five years, and asked if the man was dealing with any new health problems.

The patient mentioned that he was scheduled to go in for cystoscopy in a couple weeks because there had been blood in his urine. The procedure involves inserting the pencil-thin tip of a probe through the urethra, up to the bladder to detect the cause of the problem.

The patient had undergone thousands of dollars of MRIs and CAT scans of his lower abdomen and pelvis, which had not revealed the reason for the bleeding, and the test was the next diagnostic step.

Dr. Grossberg asked if the patient had changed anything—perhaps had started taking a new medication.

No new medicine. Then the patient's wife pulled from her purse a vial containing a supplement she had purchased from the health food store to enhance memory. Both husband and wife had started taking the herbal memory enhancer, which largely contained ginkgo biloba

"One of the side effects of ginkgo biloba is an increased risk of bleeding. He had no awareness of this. I told him to stop taking the herb and get rechecked before having cystoscopy. The bleeding stopped, and he didn't need the test."

Dr. Grossberg ticks off other common herbs that people take without realizing their side effects or how they might interact with medications.

St. John's Wort sometimes is taken for anxiety and depression. Those who also are taking antidepressants or anti-anxiety medications, such as Prozac, Zoloft or Paxil, should beware. Mixing St. John's Wort with these medicines can cause serotonin syndrome—with symptoms that may include agitation, rapid heartbeat, flushing and heavy sweating—that may be fatal.

Dong quai, which some women take for menstrual disorders and to ease symptoms of menopause, has been linked to cardiovascular problems, such as irregular heart rhythm and low blood pressure. If a patient takes the herb along with an antihypertensive drug, her blood pressure could plummet, putting her at risk of stroke.

Some people take echinacea, which enhances the immune system, for the common cold. However, those who also take Lipitor, Celebrex and Aleve face an increased risk of liver damage. Echinacea also can be harmful for those who have multiple sclerosis, diabetes, HIV infections or allergies.

Dr. Grossberg and his co-author Barry Fox make it clear that they're not anti-herb or anti-medicine.

"There just are a lot of things people can take that have a lot of bad interactions. And on some level it makes sense for them to think that what they're doing is safe. They associate natural remedies with nature and think if the supplement wasn't safe, they couldn't pick it up without a prescription.

"Hopefully this will get them to think more about it so they look before they leap. People can look up what they're thinking of taking and see if there's efficacy. And they should always talk to their doctor about everything they're taking."

Many doctors don't know much about herbal remedies, which have been used as medications for thousands of years.

"When I trained, there was nothing like this in our medical education," says Dr. Grossberg, who graduated from medical school in 1975. "The younger doctors are more likely to know this than older doctors."

Elderly people, he says, use herbal remedies and don't always tell their doctors and pharmacists. They should.

"A lot of our older patients are buying herbals and botanicals. In addition, while those over 65 represent about 14 percent of the population, they consume 40 percent of over-the-counter medications," he says.

The book, published by Broadway Books, a subsidiary of Random House, is being released in mid-April.

Note: Article adapted by Medical News Today from original press release. Article URL: http://www.medicalnewstoday.com/releases/66399.php. Any medical information published is not intended as a substitute for informed medical advice and you should not take any action before consulting with a health care professional.

I Never Gave Up On My Dreams

By Megan “Meg” Torre

Working through school while getting my diagnosis straight

My dad is a pigeon flyer and I can remember always being surrounded by pigeons when I would go outside and play. I never got involved with the pigeons though. It was sad losing my mom when I was eleven and she will always be in my heart. My dad got involved with his current girlfriend Lynne in 1999. Lynne is like a mother to me. She and my dad are always on top of me to get things done. I love my parents and they have always been there when I needed them.

I started my education at Calabro Primary School in Hoboken, New Jersey. While there I was diagnosed with Asperger’s syndrome. With this diagnosis I was sent to The Forum School, a school for children who have special needs. While there I participated in the Special Olympics and was heavily involved with the swim team. The Forum School gave me skills that will help me for the rest of my life.

My dad decided to pull me from Forum when I was in the eighth grade and send me to Academy of the Sacred Heart, which was an all-girls Catholic high school in Hoboken. I was always in trouble for my behavior and acting up. I signed up to be the sophomore class historian and because of my shenanigans, I had to resign. When junior year came I was hit hard with an overwhelming depression and was always in the guidance counselor’s office. In 2002 I was hospitalized for the first time in the child psych ward. I straightened up just enough in my senior year to be accepted to Rutgers University in New Brunswick.

When I started Rutgers I really did not care about my grades. My motto was get a “C” and go. I was more interested in frat parties. I loved alcohol. I started to write for the Rutgers’ newspaper The Daily Targum and that is when I decided to major in journalism and media studies.

I began to care more about school and made Dean’s List, my proudest achievement in college. However, in the summer between sophomore and junior year my drinking was picking up and I was beginning to think that I had bipolar disorder.

I went to see a Rutgers’ psychiatrist and she confirmed that I had bipolar disorder and told me that I was an alcoholic. The bipolar part I was totally down with, but being an alcoholic I wasn’t. At this point I had stopped writing for The Targum. I had my first hospitalization as an adult during the second half of my junior year. I was out of control with my illness and drinking. I did however study abroad in Spain in the summer of 2006, one of the greatest experiences of my life that opened me up to a new culture. I lied about how serious my mental illness was when I applied for the study abroad. I had an insane manic episode in Spain where I picked up a huge sidewalk block and swung it at people and a car. I wound up in the emergency room in Spain, but calmed down and was able to finish the trip.

I came back home and started my senior year and that is when the trouble with my illness started kicking me in the ass. I was hospitalized at least 20 times. I was asked to take leaves of absence by Rutgers’ counselors and people from residence. I cut my course-load down to part-time because I was not able to handle a full load or live on campus. I finally got sober July 8, 2008 and I am very proud to have 3 years of sobriety.

When I returned to school, I was able to get good grades in the two classes I signed up for. I would have semesters with mostly two classes only. I also took two semesters off. I wound up being committed twice in hospitals and would even spend a month in Greystone, a state hospital of New Jersey.

I had also been in various day programs. I was given a diagnoses of borderline personality disorder, which was incorrect. At Roosevelt Hospital I was given the diagnoses of schizoaffective disorder: bipolar type and I believe this diagnoses is correct. I would not tell the doctors that I was hearing voices and seeing things. I thought that people would think that I was insane. With the correct diagnoses, doctors are able to provide me with the right meds and care.

I took another leave of absence while I was at the Roosevelt program because I wanted to give my attention to the program. I believe that the Roosevelt program helped me a lot and Peter, my therapist, was one of the best therapists I’ve ever had.

I returned to school in spring of 2011 part-time. During that time I wound up in the hospital twice. However, my professors were understanding and gave me extra time on my work. I have found that when I told professors what was up they either went out of their way to help or just didn’t care. My professors gave me enough confidence to take two summer courses in the summer of 2011 and finish my college degree. I was able to participate in the May 2011 commencement, one of the high points in my life. Taking the train home that day I could not believe that I was finally done with my BA from Rutgers. The only thing I need now is a job. I have not been in the hospital since late April and I’m hoping that I will not be for a long, long time.

I do now currently have a job working at the Garden of Eden grocery store in Hoboken as a cashier. I am hoping that I will be able to do something more geared toward journalism in the future. I am thinking about going back to school to become a licensed clinical social worker. I will be looking very hard to get a job in either of one of these fields. I know I can do it, proving to myself already that I never give up in achieving my dreams, just like I never gave up on getting my BA. 

Book Review: Surviving Mental Illness

By Linda Naomi Katz, Author of Surviving Mental Illness

It has been a while since I published my first article in New York City Voices, called, “My Fears in Overcoming Bipolar Disorder.” Since that time I have published other articles such as, “How My Pregnancy Affected My Mental Illness”, “My Experience with Getting Social Security Disability”, etc.

I have done many things in my life that have helped me along the way through my recovery. For example, I used to have a hard time maintaining a positive relationship with someone. Now, I am married to someone who also has a mental illness which has given me the courage and support that I have been wanting throughout my life. I have worked as a peer counselor and employment specialist in mental health. I have helped consumers with mental illness find jobs as peer specialists and also have taught them how to maintain their wellness and ability to recover.

I have also done a lot of volunteer work. For example, I did public speaking engagements where I talked about my own recovery from mental illness. As a mental health advocate, I went to Albany once to promote legislation on certain policies that affect people with mental illness, such as mental heath parity, keeping their Medicaid insurance, etc. I also was the first one who sponsored mental health events in my synagogue and around the Jewish community in which I live.

My latest accomplishment was writing and publishing a book about my personal journey with mental illness. The book is titled, Surviving Mental Illness. It offers help, hope and inspiration to others who are struggling with mood disorders. It also lists resources and organizations where consumers can seek help in developing positive relationships and maintaining employment in a field that they love. Surviving Mental Illness also shows how one can break through the fear and stigma that surrounds consumers living with mental illness in today’s society.

Surviving Mental Illness will be available on a variety of websites such as Amazon.com and Barnes & Noble.com. There are two formats of this book. One is in paperback and the other is hardcover. My publisher is Outskirts Press. They are a self-publishing company that will have the book in their own bookstore. Their website is www.outskirtspress.com. If the book is not already on the market, it will be soon.

I encourage my peers to buy and read this book. Writing it has helped me and will teach you that you’re not alone because there are others facing a similar situation. Always remember to have faith and hope and that recovery is about living the life you are meant to have.

Note: "Surviving Mental Illness" is available at:www.outskirtspress.com/survivingmentalillness

Celebrating My 10th Anniversary!

By Kurt Sass

Ten years since my last ultra-serious depression

February 13, 2008 was a big day for me. It was my 10^th Anniversary. Not your usual anniversary, mind you. It was exactly 10 years to the day that my worst depression ever began. This depressive “episode” would end up lasting two years, involving numerous hospitalizations, cutting myself up to 70 times a day, daily suicidal thoughts, double digit medications and 22 ECT (electro convulsive therapy) treatments before even beginning to return to any form of normalcy.

What triggered this most acute of attacks on February 13, 1998? Just like all my previous depressions, absolutely nothing at all. I was just sitting at home, watching TV. Everything was going along just fine at home and work. No pressures, no anxieties, no warnings. All of a sudden, it was as if someone just stuck a pin in me and drained all my life out. I was suddenly frozen with fear, lethargy depression, you name it.

I mentioned that this depression was by far worse than any of the others I’ve ever gone through, which began for me way back in 1979. All the others had a life span of about eight weeks, and would usually die out. This one decided to become a senior citizen, however. Not a single medication worked. Month after month passed with absolutely no change. It would be a constant struggle just to get out of bed, to eat, bathe or go to the bathroom. I would sleep for days at a time and suicidal thoughts were constant. I would curse out loud that I only lived on the 2^nd floor. And for the first time ever, I started cutting myself, since the physical pain would provide a respite (if only brief) from the constant emotional pain I was going through.

After two additional medications were given their eight-week time periods with no success, the head psychiatrist at the clinic (my case had been deemed so serious by this point I had “graduated” to him) suggested I get ECT treatments. Like many others, the only thing I knew of ECT “shock” treatments was from watching “One Flew Over The Cuckoos Nest.” I initially said “No, Way!” but after two more months with no improvement whatsoever, along with reading about 20 articles on ECT and viewing a video of the procedure, I decided to go ahead.

I was scheduled for a series of eight treatments. Just as many of the articles stated, I started to feel better after the 3^rd or 4^th treatment. And just as many people on medication who start to feel better do, I stopped treatment. I did so because I became fearful of the anesthesia. Lo and behold I had a relapse. I had to start from the beginning and go through the full course of eight treatments again. After the treatments, I felt so much better. I wasn’t back to my old self, but I would say about 80%. I continued to have monthly maintenance treatments, the last being in 2000.

Once I was feeling better, I had to slowly re-integrate myself back into society. After all, I had practically been a hermit and a mute for two years! I started by doing a lot of volunteer work and going to a lot of support groups. I then, with a lot of rejections along the way, eventually found work as a home health aide, then as a service coordinator for Community Access, helping fellow mental health consumers. 

I’d love to say that everything is 100% peachy-keen now, but it isn’t. I still wake up with suicidal thoughts each and every morning, but fortunately they fade almost everyday within an hour or so and don’t come back for the rest of that day. But with that being said, I am feeling so much better than 10 years ago. I have all the reason to celebrate my “Anniversary.”

Note: Although ECT helped the author, he only recommends it as an option of last resort, and only after options such as medications and talk therapy have been exhausted. Kurt Sass suffered some minimal memory loss from ECT, but approximately 5-10% of patients suffer major, permanent memory loss.

Keeping Your New York City Housing Authority Apartment

By Runa Rajagopal, Senior Staff Attorney, MFY Legal Services

Tips that you can follow

The New York City Housing Authority (NYCHA) provides affordable housing for low to moderate income families throughout New York City. It is the largest public housing provider in North America with approximately 404,000 residents. This means that NYCHA is home to about 8.4% of the city’s population.

Getting into public housing entails a long and extensive process. Some families wait five, ten sometimes fifteen years to get into NYCHA housing. In fact, right now there are over 135,000 families on the waiting list. Once a tenant obtains a NYCHA apartment, she is required to follow its rules and regulations; failure to do so can jeopardize a tenant’s housing.

MFY Legal Services, Inc.’s Mental Health Law Project is contacted daily by mental health consumers seeking legal help regarding their NYCHA apartment. Often they are on the verge of losing their NYCHA apartment due to misunderstanding the rules, being unaware of their rights and even due to discrimination, among other reasons. Considering how difficult it is to obtain a NYCHA apartment and with the ever-shrinking stock of affordable housing in New York City, it is increasingly important for mental health consumers who live in public housing to be able keep their homes.

The following are some useful tips when living in a NYCHA apartment:

Know the Rules

It is important for tenants to familiarize themselves with NYCHA’s rules and regulations. The first place a tenant can start is with her lease, which outlines tenant rights as well as responsibilities. A tenant can also go to the management office to obtain additional information regarding NYCHA rules. Lastly, several community and legal services organizations educate tenants and provide additional literature regarding tenant rights. For example, MFY has several fact sheets about NYCHA housing on our website (see www.mfy.org to “Get the Facts”).

Put It In Writing and Get a Stamped Copy

Any requests made to the management office should be documented in writing. Additionally, any letters or other documents you submit to the management office should be copied, stamped with the date and marked as “received,” and the copy should always be retained for your files.

Often times I have had tenants say they went to their management office several times about a certain issue and that management never responded to their requests; when I follow up management usually says this was the first time they heard about the issue. By following up with written requests, you are memorializing conversations you have had with your management office. NYCHA management will be unable to say they have not heard about a certain issue if they have received three letters from you about it.

Grievances

There are some issues that cannot be resolved by the management office. Where a tenant has a dispute regarding an action or failure to act by NYCHA which adversely affects the tenant’s rights, duties, welfare or status, the tenant has a right to pursue the grievance process. The tenant can ask orally or in writing for the housing manager to informally address the dispute. If the tenant is not satisfied with the manager’s decision, the tenant can request in writing within ten days that the matter be reviewed by the Borough Management Office. If a tenant does not agree with the Borough Management Office decision, the tenant can make a written request for a hearing before an impartial hearing officer within ten days.

Add Family Members to the Household

Unlike in private apartments, when a tenant wants a family member to live with her permanently, she must get permission from NYCHA first. To do this, the tenant must request the form to add a family member from her management office which is filled out by the tenant of record and the family member. Within 60 days of submitting the form with all requested documentation, the housing manager will either approve or disapprove the request. If the request is disapproved, the tenant may pursue the grievance process. If approved, the family member can move in.

If the tenant of record ever vacates the apartment or dies, the family member will get a lease in her name if she lived with the tenant of record for a full year after being approved.

Get Repairs

Tenants have complained about how difficult it can be to get repairs fixed in their NYCHA apartments. The first step is to notify your management office about conditions you have and how they are affecting you. Follow up in writing to document complaints you have made to the management staff and ask that they follow up by a certain date. NYCHA tenants should also call 718-707-7771 to make complaints, to schedule emergency repairs and to get an emergency work ticket. MFY has a fact sheet on how to obtain repairs in NYCHA housing (see www.mfy.org to “Get the Facts”).

If after taking these steps, NYCHA has failed to make repairs, you can take NYCHA to court. There is a special proceeding in Housing Court called an HP Action, which allows tenants to sue their landlords when they fail to make repairs.

Request Reasonable Accommodations

If there are things you are required to do as a tenant but cannot do because of your disability, fair housing laws allow you to request a reasonable accommodation. A reasonable accommodation is basically an exception in rules, policies, practices, or services when such an exception may be necessary to afford a person with a disability the equal opportunity to use and enjoy a dwelling. MFY has fact sheets on the issue of reasonable accommodations (see www.mfy.org to “Get the Facts”).

Reasonable accommodations can be helpful to assist a tenant in complying with her obligations. Residents can also contact the Services for the Disabled Unit at NYCHA at 212-306-3652 regarding reasonable accommodation requests.

Report Discrimination

Where a tenant believes she has been the subject of unlawful discrimination because of a disability or other reason, the tenant has several options. If a tenant wants to work with NYCHA to report discrimination, she can contact NYCHA’s Office of Employment and Fair Housing Investigations at 212-306-4468 or can visit 250 Broadway, 27^th floor, New York, NY 10007.

Access Resources

Where a tenant has a possible legal issue regarding her NYCHA apartment, she should remember there are several resources where information, advice or even legal help may be available. It is important to communicate issues and problems with your housing manager, who then may be required to make referrals and connect tenants with services where necessary. Also, reaching out to organizations like MFY as early as possible will enable the tenant to strategize about potential issues, to obtain advocacy regarding problems and may even help to prevent eviction from her NYCHA apartment.

The above are just a few tips to keep in mind with respect to living in NYCHA housing. By being aware of your responsibilities, invoking rights and accessing services, mental health consumers who live in public housing can continue to enjoy and maintain their affordable homes.

Op-Ed: Give Us a Fair Shake

By Kathryn Fazio

Give us incentives equal to that for the blind

I learned from a group meeting at Lighthouse Inc., an organization for the blind, that the mental health disability population was the most feared disability group. Statistics showed people would rather be blind then cope with our challenges.

I engage in advocacy work so that one day I might see work incentives changed to encourage economic advancement, social compassion, and a realistic budget on par with the blind.

It is unsafe and unrealistic to be bound by out-dated Social Security Income resource limits ($2,000 is a disincentive to work), punitive rules and outdated Social Security law and practices that make it impossible to advance in "good faith" because of the complexity of managing our disability group. We require the additional supports that have been given to the blind population. The President of the United States needs to address this issue and replace old incentives with new more practical and achievable work incentives.

It is our collective duty to change case law and how rules govern Social Security so the President can measure our dissatisfaction in case law.

If we collectively and in an organized, responsible fashion enlist the help of psychiatric rehabilitation organizations in this issue instead of asking for expenditures that are far-fetched, we would crush the misuse of fear against us. I know that we and our skills are awesome. Our country must do what President Obama once stated, “Let’s recommit ourselves to building on the promise of Olmstead by working to end all forms of discrimination, and uphold the rights of Americans with disabilities, and all Americans.”

Have any of you ever experienced a hang-up, or just a constant loop of arduous ringing tones when trying to communicate with overloaded agencies who claim they want to assist us in recovery? Due to case law, better communication practices exist for the blind.

I require an open-hearted system, without unnecessarily harsh guideline barriers. I need motivators and human beings capable of kindness working in social or human services, not people who crack gum in my face and say the computer cannot be changed when I go to the Social Security office, Medicaid office, Medicare office, or Food Stamp office. It is stressful to see a line of foot soldiers working like adversaries behind plastic, just waiting to mess me up with some mistake I made due to my disability.

When I become disorganized because of mental illness, or when I am afraid of people I know can harm me, I feel displaced or unsafe in my environment. The last thing I want to hear is I did not keep the budget or receipts I was supposed to and that the onus of proof is on me. I am insulted at the disregard intelligent people have for our disability and our struggles. Why punish people with such a challenging disability involving the brain?

It is our time to create a collective standard through case law, which is as important as the Americans with Disability Act. We need opportunities on the ground level, accessible conversations with people who have power over us in government or federal agencies; communication with government representatives who have a real desire to propel us forward so we can live more dignified lives in a safe and predictable entitlement environment. We should not have to beg for this or be chased from one phone call to another with non-ending computer loops. These are safety issues as we manage erratic life-threatening disabilities. We need assistance that works instead of filling the disability issue with mixed messages as it pertains to employment, accessible work incentives, and organizational help.

I require access to true equality. I want the promise of appropriate employment goals and dreams fulfilled, without putting myself or my family’s assets in jeopardy, because I already know I have burdened my family and those I love by the simple fact that I am a person who copes with a persistent mental/emotional illness. Upward mobility with dignity, without discrimination or disparity equal to that of the blind community is overdue. Our population should have access to the benefits that the Americans with Disabilities Act is supposed to insure.

The way to begin is through compassion. The way to document it is through case law, and the way to implement it is to harness genuine economic incentives and opportunities. The onus of responsibility to provide these life-affirming economic opportunities must be on the federal government as it has been for the blind. We owe it to ourselves and our families to stand up for our rights as people, and to snuff out the long accepted practice of discriminatory budgets, unequal budgets, and poor work incentives.

Don’t Tell Me That I Am Sick

By Jennifer Ray

Coming to terms with my mental illness

I glanced at the clock on the opposite wall, taking a break from staring at a worn patch in the carpet near my feet. It was nearly 5 p.m.; the last time I looked up was about 1 p.m. My only motivation was to determine where we were in the rhythm of the day, to see how much longer I had to bear before I could retreat to my room. There, my eyes heavy from sleeping pills and emotional exhaustion, I could succumb to the only thing that brought relief from my depression: sleep.  It had not taken me long to discover that the most time-consuming activity on psychiatric units was doing nothing other that waiting for something to happen. Waiting to see your psychiatrist, your social worker, your nurse or waiting for a therapy group, for art therapy. pet therapy (if you’re lucky), waiting for a shower, to brush your teeth, waiting for morning meds, afternoon meds, evening meds, night meds, breakfast, lunch, dinner. How did I get here?

My depression during my sophomore year in college was not my first episode. I had gone through periods of depression twice during high school, received antidepressant treatment and counseling, and recovered. I took having a depressive disorder seriously and was diligent about seeking and getting help. I did not share my condition with other people, but I did not feel stigmatized. In an age of depressed Zoloft balls bouncing on the TV screen, depression seemed common in society; a little like having mild asthma or high blood pressure. I never though of myself as someone who was truly “sick”—I saved that term for people with schizophrenia or bipolar disorder, people I assumed spent most of their lives in secluded state institutions, receiving antipsychotics and getting “shock therapy.” If someone suggested I would someday know what it’s like to be in a hospital, to take a plethora of drugs, and to be considered severely and chronically disordered, I would have found the notion bizarre and comical, if not impossible. That was not me.

Near the end of my sophomore year, I noticed some familiar feelings that, in the past, heralded depression. Over the course of a few weeks, I lost my appetite. Things I normally found engaging—reading, being with friends, participating in groups on campus—had no allure. I lacked the concentration to read more than a page or two or even follow a conversation. As my mood sank, family and friends became concerned. I became increasingly depressed and despondent over a matter of weeks, and even though I recognized the symptoms and was educated about treatments, I did not want to admit that I was experiencing a relapse of the disorder I though had ended with my adolescence.

Ultimately, a close friend realized what was happening. Fearing for my safety, he made an urgent appointment with a local psychiatrist; I did not have the energy to protest. The psychiatrist spoke with me about my history, my current symptoms and thoughts of suicide, and determined that I needed to be hospitalized. My recollections of this decision, my admission, and the first few days in the hospital are foggy. My primary emotional response was shock and bewilderment, tempered only by the deadening apathy that engulfed my mood. I couldn’t quite get my head around how things had gotten “this far.”

I was on a locked unit with severely disordered men and women, many acutely psychotic. I was watched constantly by an aide, denied access to my shoelaces, and allowed to make phone calls only from a pay phone in the Day Room. But despite the indignities and trauma of this experience, I can now say it saved my life. I was discharged after a few weeks, not completely over my depression but on the way to feeling well again. I had started treatment and began to feel optimistic about my future. Within a month of getting back to school, I truly felt all this sadness and strife was behind me, and I never imagined that things could become even more challenging and complicated.

Right before my junior year I experienced symptoms that, unlike those during my depressions, I did not find troubling. I was always someone who needed a good nine hours of sleep to feel well rested, but I started getting by on dramatically less. Some nights I would not touch the bed (if I was even home), other nights I would fall asleep for 2-3 hours and then jolt awake, energized and ready to go. My waking hours became filled with frenzied activity—I never felt smarter, more able, or more confident. My thinking was swift and sharp and seemed to reach near superhuman perfection. These feelings continued, but the ecstasy soon devolved into agitation. Every annoyance seemed like a concerted, even conspiratorial, effort to thwart my plans. When my psychiatrist saw me in his office, he knew immediately what was wrong. I was experiencing a manic episode. I was enraged but eventually acquiesced to treatment. New medications—antipsychotics and mood stabilizers—were used to control my mood. Most of my symptoms abated within a few weeks, but the medications left me sedated and feeling somewhat dull. New medications for a new diagnosis: Bipolar I Disorder.

I came away from this traumatic experience dismayed and disheartened, my self-image shattered. I had already come to terms with being a “psychiatric patient.” But during my first manic episode, I was publicly sick in a way I hadn’t been before. I was embarrassed and humiliated. Being told I had a disorder only other people had—“other people” being unfortunates who lived their lives in drug-induced stupors in institutions or group homes compounded my feelings of defeat.

As I recovered, I reevaluated some of those feelings and saw things more realistically. I also met other young adults, through a support group, who struggled with the same disorder. It was enlightening and heartening to hear many of their stories, and they provided invaluable advice and support. My ideas as to what it meant to have a mental disorder shifted largely as a result of these conversations, allowing me to approach my own situation with more hope and strength. I began to see medications and therapy as my toolbox for maintaining a stable life in which I could achieve my goals. This involved tinkering to find the best combination of medicines and trade-offs in terms of putting up with some side effects if my overall health was good.

Coming to terms with having bipolar disorder, and learning how to effectively take care of myself, has been a process of peaks and valleys. After three years of feeling well, I relapsed and experienced episodes of mania and depression. Both required hospitalization and medication changes. Experiencing relapse after a few years of feeling great was a wake-up call. I secretly felt I was somehow past that sort of thing. Since then, I’ve tried to be optimistic while still recognizing that I have a chronic disorder, and the chance of having more episodes in the future is very high for me despite taking medication faithfully. Thankfully, when am stable I have no lingering symptoms. My goal is no longer to avoid getting sick again, but to keep myself stable and healthy for as long a stretch as possible. Despite my disorder, I’ve graduated college and graduate school. I’ve had lasting and meaningful relationships. I live on my own and have travelled widely. My disorder hasn’t defined my life, and despite the inevitable challenges ahead, I don’t believe it ever will.