Comments on ‘Out of the Shadow’ Documentary by the Filmmaker, Susan Smiley

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pic of mother and two daughtersNearly 6 years in the making, ‘Out of the Shadow’ is a deeply personal film that was truly a labor of love, as well as a mission.

Many years ago, before I started making documentaries for a living, I knew there was one story I had to tell, a story I had no choice but to tell. It was happening in my own life, to my own mother. Her life seemed too strange and disturbing to be true.

‘Out of the Shadow’ was born out of my anger about the stigma and vast code of silence surrounding people with schizophrenia and their families. When I learned about how pervasive this illness is, I realized that it’s not just my mother’s story, it’s millions of people’s story. People with severe mental disorders are all around us, and I am deeply troubled by our society’s profound misunderstanding of what schizophrenia is, and of the people who are afflicted with it.

In my family no one talked about my mother’s “odd” behavior, but we all wondered why she couldn’t “pull her life together.” After decades of repeated apartment evictions and involuntary hospitalizations kept my mother on a constant cycle of unfamiliar living arrangements, psychiatric wards, doctors, social workers and medications, we finally realized that she actually was so ill that she wasn’t able to help herself.

As a filmmaker, I knew that the intimacy I had with my mother would offer unprecedented insight into the life of someone who suffers from schizophrenia, as well as their families who also have to cope with the pain and confusion of the illness. I hoped that by showing my family’s insights, I could illuminate realities and clarify misconceptions. In filming my mother, I also wanted to expose the travesties of our public health system inability to offer continuum of care, so fractured is it that decades of her life were simply lost by missed opportunities. In some small way, I hope this film will educate people who have had to care for a loved one who suffers from schizophrenia. I also hope that it will help educate those people who are not directly affected by the illness, but simply desire to better understand it.

In addition, it’s my sincere wish that this film will offer families a renewed sense of hope. It took decades for my family to learn how to take care of our mother, and help her realize some degree of potential. I have learned that some recovery IS possible if the proper supports such as housing, job training and placement and medication management are in place. Cooperation between mental health professionals and family caregivers has given our family a sense of empowerment and hope that we never before experienced. It’s also allowed Millie to realize goals she never before thought were possible.

I would like to thank SARDAA and Linda Stalters for including Out of the Shadow in their film festival. I am sorry I could not be with you at the screening but please feel free to email your comments to us at info@outoftheshadow.com, and check out our website www.outoftheshadow.com, for more information and educational materials.

Thank you from the bottom of my heart.

Susan Smiley

WHY SA?

Margery WakefieldBy Margery Wakefield (and friends)

Tonight I am getting together with my friends – my friends being a dozen or so schizophrenics from the Denver, Colorado area. We get together every Monday night from 7:00 to 8:00pm to share our experiences, strength and hope with one another. In other words, to have an SA group.

We are like family–extended family. We have been meeting like this for 8 ½ years, at least, some of us. We have celebrated birthdays together, deaths of parents, triumphs in life, losses, and the joys in overcoming obstacles that only schizophrenics can truly appreciate.

We are the forgotten minority–the last group of people in the world to experience stigma. Cancer, divorce, gay marriage, and even AIDS are now more accepted. But say the word “schizophrenia,” and people still wince. Shootings come to mind, violent acts of the tiny percentage of us who are off our meds. Most schizophrenics are far more likely to harm themselves than anyone else.

What is apparent in our group is that we schizophrenics have enormous talent! I am a frustrated concert pianist, a writer of six books. P. is a wonderful portrait artist. L. is also an extremely talented artist, as well as being a lawyer. G. sings like an angel, even a capella. C. plays a mean Chopin Prelude and has a phenomenal memory for Bach. T. teaches art, even to us. M. does crochet, unusual for a guy! M. writes stories. Etc. Etc.

In our meetings, we have the serious business of SA. We have a structured meeting. First we have a minute of silence, then an affirmation from the affirmation book. Then some varied readings from the Blue Book – we vary them from week to week. Then we turn to the 6 Steps and read them. Then we go around the circle, and each person takes a step that applies to his or her day or week, and we discuss them. Then, it is time for the weekly check in. Everyone comments on how the week went, problems with symptoms, problems with medications, victories, outings, work related events, etc. During the check-in, we make sure that everyone is doing OK, and if they aren’t, we deal with it as a group. Are they on their meds? Are the meds not working? Do they need an emergency appointment with their doctor? Do they need to go to the hospital? Do they need a ride to the hospital? Etc.

In SA meetings, as opposed to 12-Step meetings, we encourage crosstalk, feedback, and advice giving. It is a more relaxed and informal meeting than say, AA. That is the charm of SA.

Tonight we had two new members, younger members, ages 19 and 20. They are the future of SA. They promised to come back, and I think they will. They seemed to enjoy the meeting, even though the rest of us are older. We made them feel welcome.

SA is a social educational group. In our group, we have fun! There are talent nights, in which each person brings a creative offering. We have potlucks and pizza nights. We have art nights, and an annual swap meet in which members clean out their closets and bring their “trash” and put it on the boardroom table, then – on the count of three – the members pick out what they want from the table. One man’s trash is another man’s treasure. It is true. We have a coffee group on Saturdays, and a walking group when the weather is nice. We go to concerts together, and museums and movies. We socialize with each other. We ARE like a family, although new family members are always welcome.

Now I want you to hear what some of the members wrote tonight about what the group means to them:

“Being in SA for the past 8 years has been one of the most valuable experiences of my life. I have made many good friends who accept me in spite of my illness. I feel a true sense of camaraderie and closeness which I did not experience in the 12-step groups I have attended. I am truly grateful that SA has come into my life.”   R.

“SA shows me that I am not alone in dealing with my mental illness and it helps break down the stigma of mental illness. SA gives me inspiration to “get over” my mental illness and gives me examples to shoot for.” S.

“This group meeting helps me realize that I have a mental illness. It also keeps me connected.” B.

“SA keeps tabs on us, and if you’re falling through the cracks, they tell you to talk to your doctor, and the buck stops here and you check with your doctor.” G.

“SA means to me that I am not alone and there are people out in the community who understand what I go through.” C.

“SA has provided me with a wonderful circle of friends. Without them, I don’t know what I’d do – except feel very alone. I’d like to keep these friends for life. They keep me sane – and alive!” C.

“SA keeps me out of the hospital. We’re a small group, and I get enough attention about my illness.” M.

“SA provides me with a social network and support.” G.

“SA is a place where I can set goals, and receive emotional support.” C.

Why SA??? Because it works! Please don’t change a thing…. MW

Reflection of Memorial Day

Memorial Day was great this past weekend. Normally, this is a somber time for those of us who are veterans. As a veteran I can tell you that often I do not look forward to these veteran holidays and July 4th due to the fact that it often times brings up memories of not being able to do more to serve the country, and there is survivor’s guilt knowing that so many of our fellow Marines, Airmen, Sailors, Soldiers, and Coast Guardsmen have died in the wars.

This past weekend was great though. Activities everywhere brought back a sense of nationalism that often times seem lost in the narrative of our country these days. But I’d like to speak about something different about this Memorial Day.

On my twitter feed Monday Anthony Bourdain said, “Remember the fallen, the wounded and let us make SURE we start paying some real attention to all the sufferers of TBI.” Some celebrities are understanding the effects of service members with wounds that can’t be seen.

This one statement by a celebrity was courageous in and of itself. Yes, let’s start paying attention to traumatic brain injury and other unseen illnesses. Thank you, Anthony Bourdain!

 

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Clinical Trial: Is Something Missing From Your Schizophrenia Treatment?

KU Wichita Clinical Trial Unit

Local doctors are conducting a medical research study for people diagnosed with schizophrenia who are currently taking medication. They want to evaluate the safety and effectiveness of an experimental schizophrenia drug to see if it helps a person’s mental abilities such as attention, memory, understanding, or reasoning. The experimental drug will be an add-on drug to current treatment, so you will continue taking your regular medication while in the study and will not be asked to change or stop taking this medication at any time.

If you have been diagnosed with schizophrenia and are currently on medication, we hope you will consider learning more about this study.

To pre-qualify for this study, you must be:

  • 18-50 years old
  • Medically diagnosed with schizophrenia for at least 3 years
  • Receiving a stable dose of an antipsychotic drug (other than clozapine) for at least 8 weeks prior to the study
  • In a stable living situation and have someone who can provide information about you to study doctors and staff members

All study-related visits, tests, and study drug will be provided to participants at no cost. In addition, reimbursement for study-related time and travel may be provided.

To learn more, please contact:

316-293-1833

Flyer (PDF)

Mental Health and the Media

The media, mental illness, and another shooter is securing the spotlight on a holiday that is meant for memorializing our heroes and honoring them. It is troubling and sublimely disheartening that our media focuses on yet another shooter. The most troubling aspect of this is that the media consistently no matter which shooter it is speculates that they have schizophrenia. It’s a dilemma that is all too familiar for those of us who have schizophrenia.

 

Today, I heard numerous mentions of schizophrenia on the news and none of it was good. Schizophrenia is the cop-out, the AIDS of mental illness, and the only mental illness that media ignores until it is time to bring it out in order to demonize, stigmatize, and enable the perception that the individuals with it are inhumane, cruel, or subhuman.

 

The reason this is the case is because the media doesn’t know any better. They haven’t seen the good in each of us. How we care for one another and encourage one another. How we live among them. Because it has been in the closet for so long.

 

The statistics with mental illness and violence are there for anyone that does a simple search of “Mental Illness and Violence” in Google. The statistics show that the significance of the mentally ill and violence is small and relatively insignificant. The statistics show that people with mental health problems are more likely to be victims of violence rather than become violent. But these facts will not come to light with journalism in the state that it is in today. Not unless we become our own truth deliverers by living our lives with purpose and actively showing the media that anyone can have this illness, and we are successful because we are living with it.

 

So if you’re like me and are disgusted with the way in which the media keeps bringing up schizophrenia in a negative light just keep on keepin on. It’s all we can do. Just be one with who you are and continue to be positive. Be outspoken. Only we can change this narrative about schizophrenia.

Photos and Archive of Radio Interview with SARDAA Executive Director

SARDAA Executive Director Linda Stalters was interviewed on Small Business Today Internet Radio on April 16, 2014. Listen to archive: www.mjwjtalkradio.com

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The Cost of Not Caring: Nowhere to go

The Financial and Human Toll for Neglecting the Mentally Ill

More than half a million Americans with serious mental illness are falling through the cracks of a system in tatters, a USA TODAY special report shows.

The mentally ill who have nowhere to go and find little sympathy from those around them often land hard in emergency rooms, county jails and city streets. The lucky ones find homes with family. The unlucky ones show up in the morgue.

“We have replaced the hospital bed with the jail cell, the homeless shelter and the coffin,” says Rep. Tim Murphy, R-Pa., a child psychologist leading an effort to remodel the mental health system. “How is that compassionate?”

States looking to save money have pared away both the community mental health services designed to keep people healthy, as well as the hospital care needed to help them heal after a crisis.

States have been reducing hospital beds for decades, because of insurance pressures as well as a desire to provide more care outside institutions. Tight budgets during the recession forced some of the most devastating cuts in recent memory, says Robert Glover, executive director of the National Association of State Mental Health Program Directors. States cut $5 billion in mental health services from 2009 to 2012. In the same period, the country eliminated at least 4,500 public psychiatric hospital beds — nearly 10% of the total supply, he says.

The result is that, all too often, people with mental illness get no care at all.

by Liz Szabo, USA Today

Full Article

Electronic App May Help Schizophrenia Patients to Avoid Hallucinations

It turns out that the frontal lobe in the brains of schizophrenia patients does not function exactly the way it should. As a result, these patients have a lesser degree of impulse control and are unable to filter out their inner voices.

“Every one of us hears inner voices or melodies from time to time. The difference between non-afflicted individuals and schizophrenia patients is that the former manage to tune these out better,” the professor points out.

If patients could learn to stifle inner noise it could have a huge impact on our ability to treat schizophrenia, he states. To this end, Professor Hugdahl’s research group has developed an application that can be used on mobile phones and other simple electronic devices, to help patients improve their filters.

Wearing headphones, the patient is exposed to simple speech sounds with different sounds played in each ear. The task is to practice hearing the sound in one ear while blocking out sound in the other. The application has only been tested on two patients with schizophrenia so far. The response from these patients is promising, Dr Hugdahl relates.

–News-Medical

Full Article

Mental Health Now Covered Under ACA, but Not for Everyone

Several states are trying new experiments to ensure complete coverage, while others opt out altogether.

Mix mental illness with politics and the business of health insurance, add heavy doses of stigma and judgment, and it’s not surprising that providing mental and behavioral health treatment is as complicated as ever, despite promising language in the Affordable Care Act.

Provisions of the new law, along with the 2008 Mental Health Parity Act, represent the latest attempts to provide preventive services and comprehensive treatment for mental health that is equivalent to that provided for physical health. No oncologist would say, “You’re entitled to 10 treatments, and then your cancer coverage stops.” Yet that’s exactly what mental health patients have heard. No cardiologist would tell a patient, “If you relapse into high blood pressure, your treatment is considered a failure.” And yet that’s been the message to alcohol and drug addicts.

by Susan Brink, U.S. News

Full Article

Reelalities Film Festival Photos