Saturday, September 24, 2011

Conquering Depression

Shock treatment. When I mention to other consumers that I go for shock treatments, also known as electro-convulsive therapy (ECT), the react...
Sunday, September 18, 2011

Poetry : The Primal Scream

The Primal Scream ...sometimes it is good to let the baby sparrow die so a new day can hatch laughter died when it was too afraid to l...
Thursday, September 15, 2011

Out to Prove Them Wrong

For the past year myself and others have been advocating for the housing for mentally ill adults with children. I've been told that drea...
Wednesday, September 14, 2011

When Going Back to School is Not Going On

September’s here. It’s back to school time for children and teens across the country. But for many, a return to school is an instigator of f...
Saturday, September 10, 2011

First Break: Where Do I Go From Here?

I grew up in the Van Cortlandt section of the Bronx. After graduating from S/A/R Academy, a Jewish Orthodox elementary school, I went to the...

Family Members & Consumers: Uniting Coalescing Constituencies

NAMI is now in its 21st year, so you could say we have come of age. In its first two decades NAMI has grown and matured as an organization. ...

Saturday, September 24, 2011

Conquering Depression

Shock treatment. When I mention to other consumers that I go for shock treatments, also known as electro-convulsive therapy (ECT), the reaction I get is usually negative. They say things like, "Oh you’re going to fry your brain," or "You’re very brave, I would never do that," or "Don’t you worry about memory loss?" Others almost offer condolences with statements like, "Oh how terrible for you." They also recount how other patients looked and felt after ECT when they were in-patients. These responses put me on the defensive. They are not welcome and very hurtful. We need to support each other in whatever treatments work for us. ECT has made a tremendous difference in my life. It lifted me out of severe chronic depression. It worked when nothing else did.

The past two years have been very difficult for me. I was hospitalized five times. I was experiencing crippling bouts of depression. It seemed as if there was a black cloud over my head that I could not get out from under. The dosage of my medication would be increased and the depression would lift somewhat for a few weeks. However, even on the maximum dose of an antidepressant, the depression would come back worse than before. I would start to hear voices and have suicidal thoughts. A stay at the hospital would soon follow.

In the hospital, the medications were changed and again the depression would lift for a few weeks. This past December when I was admitted to the hospital, the staff got very angry at me. They made me feel that it was my own fault that I was so depressed and suicidal. I explained to them that I took my medication exactly as prescribed and was involved with New York City Voices, and the Picnic for Parity Planning Committee. In addition, I was going to the gym three days a week and getting together with friends when I felt up to it. The staff felt that these activities were not enough and upon discharge I was placed in a six week partial day hospital program. I attended the program and the doctors adjusted my medication further still. I felt a little less depressed. After partial day hospital I attended Intensive Psychiatric Rehabilitation Treatment (IPRT). My goal in IPRT was to go back to work, but after a few months I became so depressed that I quit.

In May, I hit rock bottom. The black cloud that is depression took over my life. I started sleeping 12 to 14 hours a day, stopped eating and withdrew from my friends and activities. One day while riding the subway, a voice told me that the world was going to come to an end soon. The voice further explained that since I was a major loser and had no future I should just go home and kill myself. The suicidal thoughts and ideas intensified and my therapist thought I needed to go to the hospital. I did not really want to go back to the hospital, but I knew that I was a danger to myself so I agreed.

This time at the hospital, the staff’s reaction to me was a little different. They realized the medications were not working and a new approach was needed. ECT was suggested and I agreed to it. I had had ECT in December 1995 and it worked. I was depression free for a year. The staff knew this and also recommended that I continue ECT as an outpatient. Despite the stigma surrounding ECT, I was not afraid. Since it had worked before, I hoped and prayed it would work again. I knew that after each treatment I would probably feel a little out of it because of the anesthesia and have a slight headache. That is exactly what happened, so after each treatment I would take Advil and sleep for a few hours. After the third treatment I started to feel a lot better. I had two more treatments and was discharged. After that I started going once a week for ECT as an outpatient. The black cloud of depression had finally lifted.

I went weekly for ECT for six weeks. Now, I go every other week and soon will go only once a month. The only side effects I experience are grogginess and minimal memory loss. The memory loss is only of the hours preceding the treatment. Contrary to popular belief, ECT is not frying my brain or turning me into a zombie. It has turned me into a happy, high functioning person. I am now very involved with New York City Voices as managing editor. I have an active social life and I swim every day. I believe that ECT along with the support of my family and friends is responsible for this.
There is a lot of fear and stigma surrounding ECT that I believe is unwarranted. Granted, in the past before anesthesia and muscle relaxants were used there were a lot of horror stories. But things have changed. The whole procedure is very humane and only takes a few minutes. The ECT procedure is as follows: The patient is given general anesthesia and a muscle relaxant, electrodes are placed on the patient’s forehead and a wave of electricity is transmitted through the patient’s head, causing a seizure.

In an effort to de-stigmatize ECT, I am participating in an educational video the nursing staff at Long Island Jewish-Hillside Hospital is making. In the video, I am not only interviewed about my experience with ECT, but am also filmed having an ECT treatment. The video will be shown to people who are considering ECT. I have become an advocate of ECT because it has worked so well for me. It has lifted my depression and has also been proven to increase the effectiveness of antidepressants. I have been symptom free for over five months. This is a recent record. Other people I have spoken to in the ECT unit waiting room report similar results. Now, I explain to other mental health consumers and non-consumers as well that ECT is not some form of torture. It is humane and very effective.

Thanks to ECT, I have my life back.

Sunday, September 18, 2011

Poetry : The Primal Scream

The Primal Scream

...sometimes it is good
to let the baby sparrow die
so a new day can hatch

laughter died when it was too afraid to live
but even when fear took it
to the edge of a cliff
it clung to a broken cloud
by threads of itself

when the quagmire of troubled youth
combined with Einstein logic
it formed a feeble waif,
jumbled, kaleidoscoped, hardened and trapped
between carousels, pony tails,
and the grown-up on the other side

when the median line grew crooked and thick
curtains turned to walls
and walls into graves
but the "I" still breathed and clawed with passion

when I held the verdict of "yes" versus "no"
in my etherized hands
I knew
that born-again laughter was only as far away
as the "I" will push it.

Thursday, September 15, 2011

Out to Prove Them Wrong

For the past year myself and others have been advocating for the housing for mentally ill adults with children. I've been told that dream will come true with funding from Mental Health. Up until now Mental Health has only provided housing for single adults only. Maybe their reasoning for this is that once a parent is stigmatized with being mentally disabled, someone figured we never would ever again be capable of taking care of our children.

I have two sons who spent years in foster care because no one believed or will ever believe that I am capable of taking care of my sons again. I'm out to prove them wrong. Even my own sister fought against the notion of me ever taking back my boys. They are now 18 and 20 years old, learning disabled and living with me in a studio apartment. I've been told that I took them back for selfish and monetary reasons since they both have SSI. But who knows better the pain of separation between mother and child?

I don't know my children anymore and they consider me someone not to be trusted or respected, having those notions reinforced by professionals and family. The stigma comes from those who don't believe the mentally ill will ever get better or be capable of doing anything more.

I'm proof otherwise. Yes, I still have issues. I'm still somewhat depressed, but I work part-time at P.A.L.S., a peer advocacy group on Staten Island. I'm somewhat active in politics, in church and in my life and I sing in the church choir. I may not be a successful CEO of a company, but I still am a success compared to what I was like a few years back and I have the potential for doing much, much more for myself, my family and others.

Despite those who stigmatize us or stare down at us in disgust, we are what we are. What the heck is normal anyway? Normal is boring. Normal doesn't make a difference. It conforms to society rather than reshapes it.

Mental illness is not necessarily a handicap. It opens doors of opportunity and hope. We can and will be a success if people truly support us, have patience and take us seriously. Life can be great for people like us, so don't give up in spite of ourselves or others!

Wednesday, September 14, 2011

When Going Back to School is Not Going On

September’s here. It’s back to school time for children and teens across the country. But for many, a return to school is an instigator of fear. For as long as she can remember, Holly * has been shy.

"When my parents wanted me to start pre-school I didn’t want to go," says Holly, age 20. "From pre-school through most of first grade I felt so nervous before going to school. I couldn’t eat breakfast. I felt physically sick."

Holly is like many children who suffer from school phobia, or school refusal, which affects one percent of school aged children. School phobia relates to the larger problems of separation anxiety and social phobias which involve extreme, incapacitating discomfort in social situations.

"My parents made me go to school," continues Holly. "But I didn’t do the work. I wouldn’t even talk. Eventually my mom took me to the doctor. He said I was extremely shy. He told us I would grow out of it."

Holly’s experience typifies the most recent findings on shyness. Increasingly, research suggests that infants can inherit shyness just as they might inherit blue eyes or red hair. In fact, from more than two decades of research, Harvard child psychologist Jerome Kagan found that 15 percent of infants moved their arms and legs and cried when shown a new person. Kagan’s "inhibited babies" are now teens and many are extremely shy and anxious about socializing.

To get really technical, brain wave studies show that for very shy kids, excess right-brain activity develops in the amygdala, a part of the brain involved in fear and anxiety. If a shy child’s amygdala is easily overwhelmed, the child might make up for it by avoiding stressful social situations.

"It was so painful for me to speak in class," says Holly. "My participation was so bad that my teachers didn’t know if I had learned anything and they planned to fail me. Years later my mother shared why I passed the class. Without my knowing, she tape recorded me saying my ABC’s and counting at home and then played the tapes for my teachers. They knew I had learned so they passed me."

Other factors like language point to the complexity associated with shyness. Holly’s bilingual in Polish and English. She frequently spoke Polish at home with her grandmother, but English was the only language spoken at school. Although Holly continued to be afraid of speaking in school, she had no problem conversing at home in either Polish or English. Selective mutism is an inability to speak in social situations where one is expected to speak, while being able to speak in others. Perhaps Holly’s social phobia was due to a combination of anxiety, shyness, and choice of language spoken in the diverse worlds of school and home.

Holly is now a college student. While her shyness has improved, it continues to be her primary academic difficulty. "I can participate, but not without going through intense feelings of nervousness and anxiety."

Unlike her pediatrician’s prediction, Holly did not "grow out" of her shyness. While she is a successful college student, her experience raises the question of what we can do for children who suffer from this possibly overwhelming syndrome.

Michael, now 14, was a sociable child until about age 10, when he started a new school. "I never said a word the first day of class," says Michael. "And I stopped participating. I thought if I didn’t act interested in my classes, the cool, older kids wouldn’t pick on me."

"Suddenly my son was off in a little world by himself," says Claudia, Michael’s mother. "His grades began to drop. He wouldn’t talk in class. He just wasn’t interested in school. And he wouldn’t talk about it. Finally I told him if he didn’t tell me what was going on, I couldn’t help. That’s when he said he was getting pushed around by other kids."

While only 15 percent of people are born with the tendency to be shy, 50 percent say they feel shy, indicating that environment also shapes the shy child. Certainly Michael’s experience attests to this fact. "The kids pushed and assaulted me," he says quietly, lowering his eyes. "I was afraid to tell the teachers, because then the kids would hurt me even more."

Dr. Philip Zimbardo, renown psychologist at Stanford University, speaks about shyness: "Shyness may range from the common awkwardness felt entering a new social situation to the incapacitating phobia of people and inhibition to interact with others. Some shyness is inherited, but most of it is learned from negative transactions with others or imagined social failures and rejection. Shyness seems to be on the increase in countries such as the United States, perhaps due to reliance on electronic technology that is making people socially passive and substituting Virtual Reality for Face to Face Reality."

While there are no easy answers, there are options. Jerome Kagan says that often, inhibited babies become less so over time. Changing environments that promote shyness and anxiety is another strategy. Soon after Michael’s disclosure, his mother switched schools. "My Michael came back," she said. "He became more sociable and his grades gradually increased. The change was positive. He had more friends and it was a safer environment." Getting kids back to school has been shown to be the most important factor in combating school phobia.

Now in high school, Michael feels relieved. He’s talking in class, showing his knowledge, and knows there are good kids around. His message to New York City kids is, "Don’t make the negative bigger than it is, look for the positive."

His mother follows: "Talk to your kids. I think it is so important to communicate with your child and have your child communicate with you. Parenting is the starting point to the social aspect of your child’s life. Ask why your child is shy. Ask why your child can’t make friends."

Saturday, September 10, 2011

First Break: Where Do I Go From Here?

I grew up in the Van Cortlandt section of the Bronx. After graduating from S/A/R Academy, a Jewish Orthodox elementary school, I went to the Bronx High School of Science. English was my best subject in high school and I would later become an English major in college. My first romantic relationship was in high school and lasted for two years. I entered Lehman College of the City University of New York (CUNY) in the fall of 1994 and planned to graduate with a B.A. this fall.

My plans fell apart late in my third year of college when I started hearing voices. I had delusions to try to explain what was happening, believing I had a greater awareness and that the voices were the spirits of people trying to challenge me. I felt my emotions intensely and I believed I was intended to live life with intensity. Part of the experience was wonderful and spiritual, but part of it caused me to suffer through feelings of great fear and rage. I was paranoid. I believed that people on television and radio taunted me. They singled me out from all of their viewers because I was the only one brimming with energy.

My delusions and hallucinations affected my behavior, prompting my father to take me to Montefiore Medical Center where the doctor in the ER interviewed me. I told the doctor I was hearing voices. "What do they tell you?" he asked. I said, "They say things like, ‘He’s a man’ or ‘He knows,’ or ‘He’s waiting,’ or ‘He’s listening.’" I was angry with the doctor because he didn’t understand how tortured I was by the voices.

I stayed in the ER for two miserable days. My family agreed for me to be involuntary admitted so I was transferred up to the inpatient clinic. I felt so frightened and alone in the strange world of the hospital. I’ve been to hospitals for vaccinations, check-ups and that sort of thing. I would wait for a doctor to see me and then go home after the medical exam. I was never admitted to a hospital, never made to stay for more than a few hours. I was frustrated and angry with my family for making me go through this terrible experience.

My mother visited me. She encouraged me to "get better." Get better from what? There was nothing wrong with me. In no way did I have a mental illness.

The hospital gown I wore made me feel like a freak. I was given medication called Risperdal to swallow which took away my voices, but also my strength. I resented Risperdal because it drained my energy. My thoughts became slow and my movements sluggish. My enthusiasm for life was taken away. I used to have the energy of a genius! Instead, I became a zombie; an idiot. For two weeks I stayed on the unit, swallowing the doses of Risperdal my doctor thought were right for me.

I was discharged and enrolled in an outpatient program called Psych Systems of Manhattan. I stopped taking Risperdal as soon as I was discharged and my symptoms returned. After a week, I was readmitted to Montefiore. My second admission lasted much longer than my first, during which I was depressed and gained over 30 pounds from over-eating without exercise.

My father visited me and brought a video for both of us to watch. He told me about a man named Ken Steele who had schizophrenia and managed to help others with mental illness. We watched a program entitled "Four Stories," where Ken described his experience with schizophrenia and what he was doing after his voices disappeared. My father arranged for me to talk to Ken over the phone. Eventually, my mother, father and I would meet with Ken at his Manhattan apartment where I would attend my first Awakenings Group that night. Awakenings Groups: Living Successfully with Mental Illness are peer-run groups of 7-14 individuals who are striving to live, work and socialize independently in the community.

Upon my second discharge, Montefiore enrolled me in another outpatient program called Psych Systems of Westchester, where I got group therapy for people with mental illnesses. For the first two weeks, I sat alongside people who spoke too casually about their attempts at suicide. I never attempted suicide and felt apart from them and ashamed of myself.

I especially felt ashamed when I saw my best friend from grammar school walking down the street. I was going home in the outpatient van at the time. It brought me pain to see him, but I couldn’t turn away. He looked healthy. If he caught me on the street he would ask me how I was doing. What would I say? I would probably tell him the truth even though it would hurt. I would tell him I had been in the hospital with what was probably a mental illness. I am still undiagnosed, though they consider me schizophrenic.

I remember an old man who used to mop the floor at Nathan’s on Central Avenue. He had soft, but lively conversations with himself while he mopped, not noticing anyone but the invisible people he talked to. He had what they say I have: schizophrenia; a mental illness; a brain disorder; or malfunction or whatever. A schizophrenic with delusions and other symptoms is unfit for society unless he’s treated with medications and therapy. I still take Risperdal, but at lower doses. My schizophrenic symptoms of hearing voices and experiencing strong emotions have not returned.

Currently, I work with Ken Steele on the Mental Health Voter Empowerment Project and as the Coordinating Editor of New York City Voices. I began working with Ken after two weeks at Psych Systems of Westchester. Ken offered me the opportunity to work, something I needed to lift my spirits. Psych Systems arranged with Ken that I spend three days a week with him and two days with them. After six weeks, I was discharged from Psych Systems and able to work full-time with Ken.

Now I have a new therapist and psychiatrist, both with great reputations and I hope they will help me come to terms with what I’ve been through recently. I am slowly starting to accept my illness. I hope that with the right combination of medication and therapy, I can live a decent, even a successful life. I take Risperdal at a comfortable dose which keeps my voices and strong emotions away. It will be difficult to recover from mental illness, but I have to try.

Family Members & Consumers: Uniting Coalescing Constituencies

NAMI is now in its 21st year, so you could say we have come of age. In its first two decades NAMI has grown and matured as an organization. We now have over 220,000 members in all 50 states, Puerto Rico, Canada and several other nations. And I'm proud to say that we have seen a tremendous increase in the number of consumers who have joined and participate in NAMI. Our board of directors, all elected by grassroots members, now includes four consumers-1/4 of the total. Two consumers are members of the executive committee; Fred Frese is 1st vice-president and Jim McNulty is treasurer. Moe Armstrong and Mike Freeman joined the Board last year. As has always been the case, the rest of the 16-member Board is made of spouses, siblings and parents of persons with serious mental illness. There are no appointed seats on the Board. Over half of the NAMI staff are consumers or family members. The essential character of our movement remains one of fierce independence and passionate advocacy.

Yet I know that some in the consumer-survivor world disdain NAMI and claim we are not working in the best interests of persons with mental illnesses. I find these charges strange and troubling. Strange because I think any fair analysis will show that no organization has done more to advance the rights and dignity of people with mental illness than NAMI. In medical research and health policy, in housing and employment, in the media, the Congress and state legislatures, NAMI has been strong and successful. Our message is one of hope and recovery.

Like many NAMI members, I have seen the reality of recovery in my family. My daughter Shannon has graduated from college and graduate school. She lives in her own apartment and works full time in her field. She has the support of family and friends and she shares her recovery as a support group leader each week. She is a public advocate and outspoken in the fight against stigma and discrimination. I am very proud of Shannon and her achievements despite her schizoaffective disorder. I am troubled that her success story is still far too rare. And I am dedicated to helping make recoveries like Shannon's the usual and expected outcome for people with mental illness. We have a long way to go.

How can we make recovery possible for individuals with schizophrenia, bi-polar disorder and other severe mental illnesses? I think there are some clear answers to this question and a path forward. I have been delighted to discuss these issues and challenges with Ken Steele. We have found a lot of common ground, which makes me optimistic for the future. One of the items that seem important is to acknowledge that some of the loudest voices in the "consumer-survivor ex-patient" movement have a very different agenda than NAMI. We are focused on promoting recovery and we recognize that severe mental illnesses are real, medical and treatable. We believe doctors, medicine and ongoing access to treatment and services are critical to functioning well for most individuals with serious mental illness. NAMI programs recognize the importance of consumer self-help as a vital support to recovery. That's why we have trained consumers to share their knowledge and experience as leaders of our Living with Schizophrenia classes. We want to link people who have learned how to cope successfully with mental illness. It's why we have mounted a national Campaign to End Discrimination, challenging stigma. Our Campaign has worked to pass insurance parity legislation in 28 states. We insist on the truth of our key messages-"mental illnesses are brain disorders," "treatment works" and "discrimination is wrong." We aim to move mental illness issues into the mainstream of healthcare practice and policy. The recent historic Surgeon General's Report on Mental Health is one sign of success. Certainly more and more Americans are coming to understand our concerns and support our advocacy agenda.

In Washington we know that issues only get legs when they have a visible and vocal constituency. That's where the collaboration between NAMI and Ken Steele's Voter Empowerment Project got started. Through his New York City experience, Ken has discovered how well politicians can listen when they realize that you vote! With over 30,000 consumers registered and voting in New York, Ken gets a response when he calls his elected officials. We at NAMI know the importance of grassroots activism. That's the heart and soul of NAMI 's effectiveness. So naturally I was eager to work with Ken to help spread the voter empowerment project across the nation. As you know, the National Mental Health Association (NMHA) has also embraced the program and begun a series of training sessions.

At NAMI we like to work in the local communities and we like to be hands on. In a highly charged presidential election year we believe it is important to get focused attention from the candidates and the media. So NAMI started our program with an all out effort in New Hampshire. Mike Fitzpatrick is our regional director for New England. He is also a former executive director of NAMI-Maine and a former member of the Maine Legislature, Mike is a savvy politician and he knows how to do grassroots organizing. In New Hampshire we also have a former NAMI president, Rona Purdy. Rona is a dedicated advocate and chairs our Campaign to End Discrimination. She is a former on-air reporter for ABC TV and truly understands the "art of spinning."

This talented team hit the ground and worked closely with mental health center staff and consumer leaders. Registration drives were in a number of locations across the state. Educational sessions were offered to consumers and NAMI members were recruited to help drive new consumer voters to the polls. The national media attention on the famous New Hampshire Presidential Primary helped us get into editorial boards, on regional television news programs and into meetings with the candidates themselves. We ran radio and newspaper ads and queried the candidates on their positions and priorities. All of this activity increased our visibility. In the eyes of New Hampshire, we are a constituency!

Ken will be speaking at our February Legislative Conference, which will educate all NAMI state presidents and executive directors and consumer council leaders about the Voter Empowerment Project. In many states and communities we expect to work with Mental Health Associations (MHA). In every location we will partner with local consumers to get the message out. It's NAMI's slogan for this election year: "I Vote I Count."

Rather than focus on the few areas of difference, Ken and the Voter Empowerment Project give consumers and families, NAMI and NMHA, and you and me a place to work together. And working together, we truly can change the world.