City Voices

Wednesday, December 16, 2015

Honest, Open, Proud: On Coming Out of the Mental Illness Closet

By Carl Blumenthal

Airing Hopes and Fears in an Atmosphere of Support

From the 18th floor of the glittering new Department of Health and Mental Hygiene (DOHMH) in Long Island City, New York’s burgeoning skyscrapers rise like so many peaks and domes of glass, steel and stone. Encased within this hermetically-sealed office tower, even if you were possessed by the proverbial “bats in your belfry,” no one outside would hear you screaming, either by day or night.

Such speculation is apropos, my being at DOHMH on Friday and Saturday, August 6 and 7, for a training on “Honest, Open, Proud” (formerly “Coming Out Proud”), a program of the National Consortium on Stigma and Empowerment, which is based at the Illinois Institute of Technology in Chicago. The six-hour course, facilitated by peers, enables other peers to decide if, when and how to disclose their mental illness to family, friends, employers, co-workers, etc.

Twenty-five of us have gathered in a room small enough to encourage an intimacy reinforced by the nature of our jobs—we are all peer counselors for whom being “honest, open and proud” is a requirement of our work. But that doesn’t mean we always live up to this demanding standard. Here’s a chance to become better at helping other peers decide whether and when they want to publicly “join the club” of those like us who live with mental illness.

Yumiko Ikuta, Director of Rehabilitation Programs in the Bureau of Mental Health, is our host. Jonathon Larson, a psychologist at the Institute of Technology, and Kyra Wilson, an advocate for NAMI of Greater Chicago, are our Honest, Open, Proud (HOP) facilitators. All three are peers, but we wouldn’t know it until they tell us bits and pieces of their illness and recovery stories.

In the first class we weigh the pros and cons of disclosure, both short-term and long. The group setting allows for an airing of hopes and fears in an atmosphere of support. But the trick is to avoid pressuring the individual one way or another. The emphasis is on choice, whether now or in the future.

If the decision to disclose is a go, then the second class concentrates on the circumstances of that coming out: how, when, where and to whom. Although the curriculum offers a step-by-step approach, there’s plenty of room for improvisation. Jon and Kyra encourage us in both the first and second exercises to use examples from our experiences of being honest, open and proud.

Finally, in the third two-hour class, we design our disclosure statements, a summary of our illness and recovery, what used to be called an “elevator speech” (but in this building would take less than “a New York minute” because the elevators are so fast). The facilitators provide a template to ease our words onto the page and eventually into what we hope will be sympathetic ears.

However, Jon and Kyra don’t stop there. Like a wrestling tag team whose purpose is to engage the crowd as much as each other, they exhort us in the techniques of running good groups, demonstrate those practices, and lead us through a series of role plays. As one colleague tells me, “I’ve been a peer counselor for eight years but no one’s ever taught me how to do this!”

Postscript: While HOP, including all training materials, did not cost us anything—DOHMH graciously provided bagels and sandwiches both days—the benefits are immense. Not only did we learn how to facilitate the program for clients of our agencies, but the process also enabled a group of more or less strangers, albeit all peer counselors, to bond over our shared efforts to do the best for those clients and ourselves. Thank goodness Jon and Kyra blew in from the windy city and Yumiko was there to catch them on the 18th floor!

For more information about Honest, Open, Proud, see www.comingoutproudprogram.org. If you would like to start a program in your group, contact larsonjon@iit.edu, kyra@namigc.org, yikuta@health.nyc.gov or call Yumiko at (347) 396-7247.

Pullout: “The group setting allows for an airing of hopes and fears in an atmosphere of support. But the trick is to avoid pressuring the individual one way or another. The emphasis is on choice, whether now or in the future.”

NAMI Queens/Nassau Friendship Network

By FN staff: Alice Cohen, Nancy Schlessel and Barbara Garner

The NAMI (National Alliance on Mental Illness) Queens/Nassau Friendship Network was born out of need. Although adults with mental illness have the same needs as everyone else, they have a much tougher time meeting these needs. The ‘double whammy’ of isolation and stigma, in addition to the illness, makes the illness that much harder to bear. All the medical progress and new medications do not alleviate the loneliness of ‘the long distance runner.’

Rod Steiger, a well known actor, who suffered from major depression, often said that “companionship…companionship…companionship” is crucial to recovery. Most people are able to call a friend and either schmooze, meet for a cup of coffee, or go to a movie. Not so for the mentally ill. Many of those who are ill do not even have a supportive family member.

In December of 1992, the NYTimes published a front-page article lauding the birth of the Friendship Network, an idea whose time had come. The NAMI Queens/Nassau Friendship Network has done much to solve the loneliness problem. There are one-on-one introductions for ‘friendship’ purposes and group activities, where those who attend bond and network. The activities include group tennis lessons, two bowling sessions monthly, monthly Friday night discussion group with a social worker, monthly men’s group with a counselor, monthly ‘schmooze’ group with Alice Cohen, the Founder and Director, a weekly nutrition/diet/art group and other sporadic activities including, workshops on employment and sexuality, at members’ request. Every summer, a barbecue is held in Cunningham Park, enjoyed by more than 50 members, with games, plenty of food and fun. Members meet, exchange numbers and develop a support system that has been lacking in their lives.

In addition to all these activities, there is an abundance of volunteer work available with the Friendship Network and the NAMI office, requiring several people to cooperate on a given project. This serves as a motivation for some to return to work. The experience is beneficial for members because even though one may be proficient in an area, it is equally important to be able to work with colleagues.

Members must complete a lengthy application, sign a membership contract, obtain a signed doctor release, and reach a high level of stability, before being accepted into the Friendship Network.

Members are able to develop connections with others and have a more fulfilling life in a comfortable social setting. Some never had the opportunity to acquire adult social skills and graces, and never experienced mature relationships. They spent their critical maturing years warding off ‘voices’ and being tranquilized on heavy-duty medications. Can you imagine the joy and satisfaction members enjoy when they can find someone with whom they can share their feelings, and be special, without fear of stigma!

Unfortunately, the need for socialization has not been recognized as critical to the recovery process, thereby precluding funding, except from private contributions. Recognizing that most of those who wish to partake in the Friendship Network do not have the financial wherewithal to pay any fee, there is a sliding scale. Some of the contributions go toward scholarships for those without any means.

Psychiatrists, psychologists, therapists, and social workers, have seen their patients improve because their loneliness has abated. It has been a life-altering experience for all.

How a Peer Support Training Program Transformed My Life

By Emily

Peers Understand Where You Are Coming From

I always had this feeling that I was not good enough, despite putting my all into school, gymnastics, running, and art. In fact, I felt I must be bad and needed to be punished. That’s when I started hurting myself.

In retrospect, I excelled at sports, was on the honor roll and received special awards at graduation. Somehow, I was never satisfied with my accomplishments. I graduated high school hiding everything. But the summer leading up to college was when things started falling apart. Whatever was “my fault” led to self-harm and inner-pain. I made it to college, but only for a short while. Soon after heading off on my own, I was sent to the hospital and that was the end of that. So began my life as a patient.

I entered a program that was supposed to help me, yet I was isolated, medicated and told that everything I was doing was wrong. This worsened my condition. “I’m bad, I deserve to be punished” was my motto.

I went through one hospitalization after another, until the day I was told I needed 24-hour supervision and was sent to Pilgrim State Psychiatric Hospital. I felt I would never be ‘normal’ again.

After months of one-to-one supervision, medication and everything else that came with being hospitalized, I decided to shut up, comply and act like a ‘good patient’ in order to be released. I was let out and sent to a group home. A few months later, after a suicide attempt, I was back at Pilgrim Hospital by court order.

At Pilgrim, I was often forced to take medication to make me more docile. If I didn’t comply, I was restrained in the seclusion room and given a shot to “calm me down.” I was always on one-to-one and experienced anxiety attacks every time I was naked or needed to use the toilet in front of the stranger assigned to me, so I avoided showers and bathrooms at all costs. Their most degrading and memorable solution were laxatives.

When they felt the medications weren’t working, I was told I needed electroshock treatment (ECT), and that, since I was too young to make decisions about my treatment, they made the decision for me. I was 21-years-old.

The ECT caused brain damage. I developed epilepsy and still have learning and memory problems. Along with the loss of some painful memories went the loss of recalling a great deal of the wonderful people, things and experiences throughout my life. Was it worth it? While at Pilgrim State, I witnessed forced treatment, neglect and confinement. After my two-year stay, I went back to a group home, day treatment and more meds than you can count on your hands and feet.

I resigned myself to the fact that I was a full-time psychiatric patient. I cut and burned my body until there was only scar tissue. I overdosed and ingested anything toxic, hoping it would be the end. I planned and attempted suicide on multiple occasions. Like clockwork, I would be in and out of the hospital every few months. I felt alone. I was dependent upon medication, couldn’t hold a job and had trouble in school. I had a terrible self-image. Then came the stigma. I was no longer Emily. I was an illness: major depressive disorder, bipolar, schizoaffective. Whatever they labeled me, I became.

My metamorphosis began while I was interviewing to get into a class that trained peer supporters. I anticipated not being accepted into the class and began perfecting my suicide and how I would be presented at my funeral. My doctor was worried about me and sent me to the hospital as a suicide risk. I was there for two weeks and while I was there, found out that I was accepted into the class. I was discharged from the hospital and the next day started my class.

My new friendships, relationships and experiences all began to matter to me. The real Emily buried beneath the darkness began to emerge. I was breaking out of my shell, playing music, singing, dancing and socializing. I learned so much sitting in a small room all day with peers who understood where I was coming from. They helped and inspired me. I discovered that I was not alone. If I chose to, I could use my experiences to help others, which I did and have continued to do. Everything I went through was not a waste of time—it was precious knowledge I could pass on to someone like the old Emily, who thinks she's a bad person, who thinks she can’t do something, who needs a voice.

The world works in strange and mysterious ways. I went through hell so I could appreciate the wonderful things I have now and all that I’ve worked for. These days I’m a peer supporter, an advocate and a member of society, not the system. I’m living with my wonderful boyfriend, have a job, volunteer, and am an independent woman doing things on my own. I’m finally unstuck and still moving forward. Recovery is a bumpy road with many potholes, but it’s much better than being stuck in the ditch I thought I’d never climb out of.

Pullout: “I’m finally unstuck and still moving forward. Recovery is a bumpy road with many potholes, but it’s much better than being stuck in the ditch I thought I’d never climb out of.”

Destination Dignity March and Rally

By Carla Rabinowitz, Advocacy Coordinator, Community Access

It was an amazing day. Hundreds of mental health recipients and their supporters arrived in Washington, DC on August 24, 2015 for the first ever Destination Dignity march and rally. Destination Dignity is a collaborative project for change and public engagement around mental health in America. The Destination Dignity march as its focus brings people from around the world and nation together, with people affected by mental health conditions in the lead, to create energy and solidarity for a more supportive nation.

Tents were set up on the National Mall where we listened to speeches on mental health pride and recovery. Some of us spoke on our own recovery and how important choice is to mental health. The emphasis of the speeches was on how we, as mental health recipients, must maintain our dignity and our ability to choose our fates. We do not want to be told that we must take medication, or that we should strive for lesser lives: The choice of how to conduct our lives in every aspect is ours.

Many tourists also stopped by, attracted to the spirit of the event!

The march around DC was historic as, for the first time, we had people from all over the United States gathered to proclaim that choice in treatment is ours.

People baked in the hot sun, all to speak with one voice. Many of us met leading advocates who we only knew by name. It was an historic day of empowerment and the first of many marches to follow in years ahead.

Why Do We March?

Dignity and rights for people affected by mental health conditions are the counterpoint to a legacy of stigma, shame and discrimination that has caused social isolation, chronic underfunding of services, unnecessary levels of disability and unemployment, and the unacceptable levels of premature death, including by suicide, of people affected by symptoms of mental illness. Public awareness for these issues must be led by people who have experienced these impacts personally, along with their supporters, allies and related professionals, in order to both realize change and engage the previously silent majority of Americans affected by these issues.

Employment is the Best Medicine

By Danielle

Give me a chance and see what I can do for you. A chance is all I want and what I strive for.

I was stuck in the doldrums for countless years, working on how to get out of my own head. I was stuck. My mind was scattered, unfocused, yet yearning for a more positive life. Deeply depressed, suicidal, delusional and conflicted, I told myself, “Have a positive mental attitude and anything is attainable.” I reinforced my daily life with this positive ideal, placing it on each of my emails.

I have been hospitalized over a dozen times. During my last stint, I met people from the Lighthouse Clubhouse, a vocational rehabilitation center for people diagnosed with mental illness, and they gave me a service called Peer Support in Aftercare. It was a free service that helped me transition back into society. I lived in fear for many years, isolating myself at home, consumed by my delusions. My prescription to wellness was a friendly face, a cup of coffee and conversation that began my path to wellness, putting my symptoms into remission. I’d be remiss not to mention the visiting nurses that came five days a week to keep me in check.

Distracted by the work of the clubhouse that needed to be done, I made it my mission to help those who helped me. I joined the Lighthouse. I went to the clubhouse as if it were my job to do so, the first one there and the last to leave. I worked in each unit, diligently trying to better both myself and the units. Job opportunities presented themselves, upon which I pounced like a tiger. Yet fate would have it that I didn’t meet certain criteria or realized the job wasn’t for me, post-panic attack.

One Friday, I attended the group meeting to close the week joining most of the staff. The program director of the Lighthouse announced that a local scanner job was opening, a mere 14-minute commute from my house, and asked if anyone was interested. I eagerly signed up, thinking, “Please give me a chance and see what I can do for you.”

One interview later I was hired. I was going to be the best scanner ever. I must have asked my coworker, mentor and friend Chuck a million questions back then (I still do). By the end of the day, we went from one shred bin to two. The job was short lived, a mere six months. It dawned on me that I really loved working, and that the backlog of scanning was coming to an end.

Unexpectedly, I was offered a full-time position as an administrative assistant in operations. I was ecstatic. It was a hefty job description, but I was up for the challenge. I thought, “Thank you for giving me a chance to see what I can do for you.” Now, my job title reads “Operations Coordinator.” The perks? The company started a free weight-loss program. Within 43 weeks, I lost 97 pounds.

I can’t thank my work-family enough for all the support they have given me. They are my compass, pointing me true north, challenging me mentally and physically. Thank you for believing in me, noticing my talents and exploiting them, teaching me the business, and letting me shine. Can you tell that I love my job? The very best part, my symptoms have been in remission the entire three years I’ve worked.

Working has been the best prescription for me. I’ve tried all sorts of anti-psychotics, yet none of them helped me nearly as much as being a productive integral member of society. In fact, the meds made me more delusional than before. With goals and people standing behind me, I have become very successful and an integral part of the business. If given the opportunity, please give someone else a chance. It could make a world of a difference.

Pullout: “Working has been the best prescription for me. I’ve tried all sorts of anti-psychotics, yet none of them helped me nearly as much as being a productive integral member of society.”

Professional Actors Train Clubhouse Members in Order to Fight Stigma

Based on fear, misunderstanding or a lack of information about mental illness, stigma may cause people to delay treatment or to experience discrimination in employment, housing and other areas of their lives.

Goodwill Industries of Greater New York and Northern New Jersey, Inc. and Village Playback Theatre have been awarded a National Endowment for the Arts (NEA) grant to support a series of interactive performances designed to decrease the stigma related to mental illness and educate the public in Queens, New York. The prestigious award is part of the NEA’s second major grant announcement for the 2015 fiscal year.

Under the guidance of Village Playback Theatre, selected members of Citiview Connections Clubhouse, a center for adults with psychiatric disabilities operated by Goodwill NY-NJ, will train and perform with the professional actors throughout this project. Performances will be provided to adults with mental illness in shelters, residences, and treatment programs culminating in shows for the general public in May, Mental Health Awareness month 2016.

Note: To learn more, you can contact Russell G. Roten, Director of Citiview Connection Clubhouse at (718) 361-7030 or via email: rroten@goodwillny.org

Mental Illness Detoured My Salvation

By Akala

Today I'm Reaching Out to Jesus

I am 60-years-old and was recently diagnosed with bipolar schizoaffective disorder. The illness did not surface until September of 2013. As a child, I did have some learning problems, anger issues and anxiety, although my problems went untreated. I was considered a rebellious child. I was raised in poverty with an alcoholic father.

In 2010, I began attending a Pentecostal church where the supernatural powers of the Holy Spirit were believed and altar calls were always toward the end of the service. I have been anointed by the Holy Spirit and slain in the spirit twice. This is significant because before it happened to me I thought that phenomena was all faked. I can assure you that for me it was not. I gained a lot of faith and became very obedient to God. I had lived a life full of sin before I gave my life to Jesus and accepted Him as my lord and savior. I didn't stop sinning all at once, but changed gradually, for which I am thankful.

My delusions began after experiencing years of my largely untreated stress and depression. I would take anti-depressants inconsistently. I considered my depression circumstantial and didn't feel the need to take medication on a regular basis. My anxiety increased at times which made shopping difficult as well as being around a lot of people. I enjoyed living a sheltered life but did not have many friends.

I share this because my delusions, voices and hallucinations have all been centered on God, Jesus, angels, demons, Satan and even aliens. Although being on medication has curtailed this, I still believe in alien beings from other worlds. The evidence is too overwhelming for me not to believe that there are beings from other planets visiting us. I personally have not experienced visitations, but many other people have.

During some of my delusions I have choked myself and hit myself in the face. God and Jesus would tell me I was ungodly and repulsive. I made several trips to the hospital thinking that God was trying to kill me. Feelings I had throughout my body convinced me I was having a heart attack. Each time they diagnosed me with anxiety. The hospital didn't recognize that I was having delusions and hallucinations until later when I called in to the police department that I thought there was a bomb planted in my apartment building and some ex-coworkers were trying to kill me. I also called them again a few weeks later with the delusion that demons had given me anthrax and that I was bleeding to death internally.

I started working at a music company in August of 2014 that employed several people who were Satanists. My delusions and hallucinations began in September. I thought I was in the middle of a battle between good and evil because I was a Christian and they worshiped Satan. I could actually see and feel attacks by demons and Satan while I was employed there. I was fired from that job because the attacks in my mind seemed so real and even physical that I would get sick and have to leave. One day it felt like a steam roller was in my head and I think that my blood pressure had gotten dangerously high. We have the ability to make ourselves physically sick from mental illness.

I will not describe my many other embarrassing delusions. I still carry a great deal of shame, although I had absolutely no control over what was happening to me. I am trying to repair the damage that was done to my family because of my illness. More importantly, I am reaching out to Jesus once again because I feel as if I have lost my salvation. Sometimes it is very difficult to read God's word, but I will not give up. I want the relationship I had with our Father in heaven and His son Jesus before I became ill. I had great peace and became someone that I could be proud of; not full of pride, just grateful that Jesus had worked a miracle in me and changed me. I never want to return to a life full of sin, and I have Jesus to thank for that along with the workings of the Holy Spirit within me.

If you are experiencing a health issue, whether it be physical or mental or even both, I strongly encourage you to give your life to Jesus and let Him help you through it all.

Pullout: “I want the relationship I had with our Father in heaven and His son Jesus before I became ill.”