Charles Feldman Recovery Story

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My name is Charles Feldman. I am 60 years old and I am in recovery, living with paranoid schizophrenia. I was in a songwriting group once at my mental health center, where I wrote songs viewing mental illness from a topical point of view. Years later, I was looking at the lyrics of one of my old songs, where I wrote: “I do not live, but merely exist.” Things have changed for me so much that I found it hard to believe that I ever felt that way. I still get anxious and depressed at times, but I now feel that these are part of normal life, and that the important thing is my spiritual search, along with my advocacy work and my relationships with family and friends. That, I feel, is recovery.

Growing up, my main concern was that I felt that I did not know what to say to people, socially. In high school, I would read anyone who was countercultural, like R.D. Laing who thought there was personal growth through schizophrenia. I now joke that I am one of the few people who chose to develop schizophrenia.

One day in a college encounter group course, the leader gave us an exercise to do. He said we should all give ourselves a piece of advice. The advice I gave myself was: “Don’t blow it.” Later that evening, I went to a lecture, and the speaker said at one point: “Don’t blow it.” I thought he said that because of what I had said earlier in the day, which I thought he somehow knew about.

From that point on, I started feeling that people I met, and even people walking by me, were saying things and making gestures referring to me, that had hidden messages. I withdrew from school. When I got back home, my psychologist asked to see me. I saw him, and this psychologist, who had told me there was no such thing as mental illness, told me he was putting me in the hospital. I thought the hospital might be a place where I could get some understanding, so I agreed to go. Once there, I thought all the other patients were agents implanted to make it look like it was a hospital. I watched TV for the first time in a long time, and I thought even the newscasters were talking to and about me.

After a few days, I saw a psychiatrist. I told him what I had been told, that there was no such thing as mental illness. He raised his voice back at me and said: “There is such a thing, I’ve seen it!” From that point on I felt he was part of the conspiracy against me.

Six years later, my parents found me an apartment, telling the landlord that I was a writer and that I was just moving into town. I still didn’t realize that my new medication was working. I told my new nurse that I didn’t want to keep taking it. She went and got my new psychiatrist who asked me how things had been going for me in the past few years. When I told him that things had not been too good, he suggested I try the medication. So I did. I started going to a day program, and going to a therapy group. I noticed that when people would get angry one social worker, she would not get angry back at them, but would respond with empathy. I had never experienced this before. I went on to do mental health advocacy both at work and volunteering. A few years ago, I found a spiritual home. I have learned to meditate, which I couldn’t do before. This has given me something that therapy, day program trips, the consumer movement, and other advocacy, could not give me. It has given me some peace of mind and purpose in life.

I now work doing mental health advocacy and support at a drop-in center.  I can see people daily on the road to recovery. They feel that peer support has made a great difference in their lives. Being able to talk with their peers, and be open about their mental illness, gives them a freedom that they say they never had before. My peers and I credit things like medication, work or volunteer work, peer support and a place to socialize, spirituality, and finding or having a place to call home as the grounds of our recovery.

NIMH Brain Awareness Week Quick Links

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Quick Links: Mental Health & the Brain

National Institute of Mental Health sent this bulletin at 03/12/2013 06:14 PM EDT

 It’s Brain Awareness Week!  Find the latest NIMH resources and research about the brain below.

New You Can Use

Helpful Resources

NIMH Research

Help transform the understanding and treatment of mental illness through research. Consider participation in one of these studies. 

 


Kalene DeHaut, MSW (c)  

Office of the Clinical Director | DIRP

t: 301-594-3188 | e: kalene.dehaut@nih.gov

 

Brain Awareness Week post by Margery Wakefield

BRAIN AWARENESS WEEK

THAT THING ABOUT MY BRAIN

By Margery Wakefield

 

My eyes are different from your eyes.  No problem.

I weigh more than you do.  No problem.

You are taller than I am.  No problem.

My brain is different from your brain.  BIG problem, especially if I happen to have schizophrenia, which I do.  Because I am schizophrenic, I can be fired from my job, thought of as a deranged killer, called names like “nuts,” “psycho,” “fruitcake,” “wacko,” “crazy,” “weirdo,” loony,”  and many others.  So, I learn to keep it all a BIG SECRET.

I first knew that something was wrong when I was about seven years old.  I was at a summer picnic at my grandparents’ house and I suddenly knew that I was different from the other kids.  They were all playing and I didn’t feel like playing.  Something was wrong and I called it the “shadow.”

The shadow followed me throughout grade school and high school.  Some of my teachers sensed that something was wrong with me.  I seemed troubled, depressed.  But since we lived in an isolated part of the country, there were no mental health services, especially for kids, and teachers were not trained to look out for this kind of thing.  My friend Sharon W. was always getting beat up at home and coming to school covered with bruises, but that wasn’t caught either.  We were silent victims.

Nowadays, things are better for children.  Teachers, and the community in general, are trained to be aware of differences, of abuse.  But some children still fall through the cracks, unfortunately.  The results are the shooting tragedies which have happened recently in so many places by young people with untreated mental illnesses.  They give all of us schizophrenics a bad name.  99.9% of schizophrenics would probably hurt themselves rather than another person.  But there is the .1%, and they make the headlines and become the media stereotype.

In 1966, the shadow was finally given a name – schizophrenia.  I had a particularly brutal and painful nervous breakdown when I was eighteen years old.  The word schizophrenia didn’t terrify me.  I was just happy that the shadow finally had a name.  If it had a name, then something could be done about it, I reasoned.

It took me 16 years to make it through college, but I finally did.  I took some detours along the way.  I was hospitalized more than 55 times for my unbearable anxiety and psychosis.  But then, a strange thing happened, I started getting better.  I finished my degree and went on to get a master’s degree in social work.  I decided that I would thrive in spite of the odds.

Today, I live a quite normal and happy life.  I work part time in the community.  I also work part time for SARDAA, the organization which oversees matters relating to schizophrenia and related disorders and organizes the Schizophrenics Anonymous groups springing up all over the country.  I am proud to be a part of SARDAA.

I take my meds – faithfully.  I have my own apartment.  I drive my own car – a ten-year-old Subaru Forester.  I teach piano.  I have written six books.  They’re not bestsellers – yet – but they do make a statement.  I travel in the US and abroad whenever I can.  I have been a co-leader of the SA group in Denver, Colorado for eight years.

If you met me on the street, you probably wouldn’t know that I was any different from yourself.  But I am.  My brain is wired just a bit differently.  I have an over or under-abundance of certain neurotransmitters which cause my illness.  That’s about all there is to it.

Don’t feel sorry for me because I have schizophrenia.  It has been a challenge for me, but it has also been a blessing in a way.  It has left me a more compassionate person.   And for that I am grateful.

 

 

Congratulations Dr. Fred Frese

Congratulations Dr. Fred Frese National Council for

Community Behavioral Healthcare’s Awards of Excellence 2nd Place

Lilly Reintegration Award for Advocacy.

Frederick J. Frese, Ph.D. is a psychologist who has specialized in the area of schizophrenia for over forty years. Diagnosed with the condition when he was 25, he has worked tirelessly as a practitioner and advocate for consumers and their families. Dr. Mike Hogan, Chair of the President’s New Freedom Commission that is revolutionizing the delivery of mental health services in the United States, has called Fred “a national treasure.” A prolific writer and outstanding speaker, revered both for his sense of humor and his remarkable ability to translate research and public policy into usable information, Dr. Frese is often quoted — and sometimes misquoted.

Dr. Frese will, again, amaze SARDAA conference attendees with his Keynote address on October 26, 2013 in Houston, TX

Health Activist Month, April 2013

WEGO Health is sponsoring April to be health activist month.

They are challenging individuals to write 30 health related posts in online media, one for each day in April.

They are providing suggestions to help people come up with things to write about as well to help people avoid writers block.

Read More

Online CBT For Schizophrenia: Dr. Jen Gottlieb and Brian Chiko

In cased anyone missed it when it was available through the upcoming events page.  Even though the sessions have ended, there is still some materials hosted on the website.

Cognitive Behavioral Therapy can be very helpful for people with schizophrenia, but practitioners are few and far between, and sessions can be expensive. CopingTutor.com is a new online tool to teach people who have schizophrenia clinically-validated cognitive behavioral techniques to better cope with common symptoms like voices. This month on Brain Waves, Dr. Jennifer Gottlieb, the scientist who developed the program’s content, and Brian Chiko, the CEO of the program’s parent company, explain how it works and how to get an account.

This segment’s question and answer session is now closed.

 

https://www.imhro.org/brain-waves/online-cbt-schizophrenia-dr-jen-gottlieb-and-brian-chiko

Israel Taking Lead On Anti-Psychotic Drug Research

Israel plays lead role in shaping antipsychotic drug research
Posted By Viva Sarah Press On February 28, 2013 (12:00 am) In

There’s a computerized repository inIsraelthat looks like any other with data sets, tables, forms, graphs and reports. But tap in the right username and password and you’ll access the world’s most comprehensive repositories of research data from drug studies to treat schizophrenia and depression.

This warehouse of information is a key component of NewMeds (Novel Methods Leading to New Medications in Depression and Schizophrenia) — an international consortium of scientists, funded under the Innovative Medicines Initiative of the European Union, which has launched one of the largest-ever academic-industry collaborations to find new methods for developing drugs for these two mental disorders.

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Israel’s representative in this consortium is Prof. Jonathan Rabinowitz, ofBar-IlanUniversity’s Louis and Gabi Weisfeld School of Social Work. Rabinowitz is the academic head of the NewMeds group on advanced data analysis techniques. He’s in charge of devising procedures for shorter and more efficient clinical trials with antipsychotic and antidepressant medications.

Rabinowitz is considered a pioneer in this field. As part of the NewMeds project, he was given unprecedented access to data on drug testing from more than 45,000 patients in over 100 trials spanning 25 countries.

“If you have data from one drug study, you can learn something about this one study. But if you have 100 studies and put them together you can learn a lot more,” he tells ISRAEL21c. “This is an important area of attention because of the realization of how much good you can do by pooling data.”

The NewMeds repositories at BIU, with billions of dollars’ worth of data, give “Israela central position in this new evolving area,” says Rabinowitz. “It’s a super-important asset. So it putsIsrael, and BIU, in a lead role.”

Making a difference

Schizophrenia affects about 1.1 percent of theUSpopulation, while depression has an effect on one in 10 Americans.

Rabinowitz, a 54-year-old father of three who grew up inCleveland,Ohio, and moved toIsrael24 years ago, has extensive experience in studying the efficiency and safety of psychiatric medications based on data from trials and national case registries. A quick Internet search sees his name pop up on committees, in research papers and in academic journals worldwide.

Since the NewMeds initiative’s inception in 2010, Rabinowitz has travelled extensively, presenting this data repository at academic conferences and health gatherings. He has published more than 150 scientific papers.

He will present his research at the eClinical Intelligence meeting inSan Franciscoat the end of February. Next year, he will co-chair the program committee for the Biennial Schizophrenia International Research Society Conference inFlorence,Italy.

For the greater good

Not everyone is excited by the idea of pooling data.

“Sharing information is the key to developing new models and methods to enable novel treatments in any disease. But when a drug company spends $35-$50 million dollars per trial, you can understand why they are hesitant about sharing data,” he says. “But they will have to.”

The European Medicines Agency (EMA) is now setting up a policy to ensure that pharmaceutical manufacturers make their trial data accessible. Unsurprisingly, the EMA recently appointed Rabinowitz to the advisory groups on promoting good analysis practice and on clinical trial data formats. He also serves on the Clinical Expert Review Committee for the FDA data standards development initiative.

“What’s been exciting is that this is really cutting edge and we’re able to maximize use of data that’s already been collected. Data sharing beyond the individual trial adds to the ethical capital of conducting drug studies. More good can come from the time and risk that people subjected themselves to for being involved in these trials where some of them were getting placebo and experimental active treatments,” says Rabinowitz.

He predicts that it will take many years to reap the benefits of his work in finding new medications for sufferers of schizophrenia and depression. On the other hand, he notes, collaboration and sharing data will help advance the field by making better use of resources.

He says it is gratifying that NewMeds partner pharmaceutical companies, which are normally fierce competitors, can now focus on what he dubs “pre-competitive space” — common issues such as identifying subsets of patients to target in drug discovery trials.

“Of course there is hope for advancement in the field. We work together in this pre-space,” says Rabinowitz. “We are trying to design drug discovery trials to make them more efficient based on our findings.”

Related Articles

Israeli study finds genetic connection between autism and schizophrenia

Article taken from ISRAEL21c - http://israel21c.org
URL to article: http://israel21c.org/people/israel-plays-lead-role-in-shaping-antipsychotic-drug-research/

 

WEGO Health Online Focus Groups

WEGO Health will be holding a paid, virtual focus group for active members of the online Schizophrenia & Mental Health communities.  We hope you will join us to share your story.

Here are a few details about our sponsored focus group:

  • these panels will be held virtually (meaning online and on the phone) so participants can join from anywhere in the US
  • particpants will get the chance to meet other patients & caregivers and share their story
  • each participant will receive a $75 amazon.com gift card for their time

If you’re interested in participating, please complete a quick survey about yourself: http://info.wegohealth.com/schizophrenia-panel

If you have any questions, please don’t hesitate to let us know.  We’d also love your help in sharing this group with others in the community.  Please take a moment to tweet or facebook about it:
Interested in Schizophrenia & Mental Health? Join a sponsored, paid focus group with @wegohealth: http://info.wegohealth.com/schizophrenia-panel

SA Co-Administrator Message March 2013

Greetings To All,

Today my thoughts turn to the 1st step:” I surrender … I admit I need help. I can’t do it alone.”

Before and after being treated for schizophrenia I was a very independent sort of guy. I lived on my own, had my own car, and worked full or part time jobs. Despite all of that, my life seemed to be going nowhere.

I changed psychiatrists several times, each putting me on different medication. Still, that was of little help. I felt alone in the world. I slowly pulled away from the few friends that I had, feeling sorry for myself because they were into street drugs and I wasn’t. What was I to do? I began to pray and ask God for help.

Shortly thereafter, I met up with a long time buddy and good friend whom I hadn’t seen in a dog’s age. We stopped for coffee and I told him my story. He listened intently. When I ran out of things to say, he told me I needed to find a group of people with schizophrenia. He went on, saying: ” Just like there’s Alcoholics Anonymous, and Narcotics Anonymous there has to be a Schizophrenics Anonymous meeting somewhere, and, if you can’t find one, start one of your own. But I said, “I can’t go around telling people I’m schizophrenic, what will they think?” My friend gave it to me straight: “You’re either going to grow or go.”

The more I thought about it, by-gosh, the more my friend was right. I took action by calling major cities in New England and even New York City hoping to find an SA group, but to no avail. Then someone told me to call “Info-Line” in my own state of Connecticut and sure enough they had the name and phone number of a gal who had been in touch with SA Headquarters in Michigan and was looking to start a SA group 30 minutes from where I lived.

That all took place 26 years ago as of this writing. Since then I have started many SA groups in CT and am a Co-Administrator for SA as well as being a Vice-Chair on the Board of Directors of SARDAA.

Believe in a power greater than yourself and have the courage to pursue your dreams and you’ll be amazed at what you find.
Jim C SA Co-Administrator

 

FFS Leader Message March 2013

February was quite an eventful month for me and my family. I hope you had the chance to read the article in the NY Times “A Guide In The Darkness” which featured my son Lance and myself. We were quite anxious going public in such a large way but the feedback has been overwhelmingly positive and more importantly, Lance was ecstatic.

 

One of the 12-Step slogans is “You’re Only as Sick as Your Secrets” and I can attest to that firsthand. I feel as if a weight has been lifted from my shoulders. We are no longer living with the “elephant in the room” and people have come out of the woodwork asking for help and sharing their personal journeys. When I made the decision to go forward with the interview I felt if I helped only one person I would have been happy. Also, I can now advocate on a much grander scale and help not only Lance but others as well.

 

The other miraculous milestone this month was Lance’s 3-year anniversary in Narcotics Anonymous. He asked me to present him with his coin and all of his siblings and even his grandparents attended the anniversary meeting. It was a magical and emotional evening. My heart is still swelling with pride and gratitude.

 

Please spread the word about Family & Friends Tuesday Support Group so others can benefit from the support we give one another. We cannot do this alone!

 

“No man is an island,

No man stands alone,

Each man’s joy is joy to me,

Each man’s grief is my own.

We need one another,

So I will defend,

Each man as my brother,

Each man as my friend.”

 

 

Until next month,

Susan Sheena, FFS Leader