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

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

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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

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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

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Reelalities Film Festival Photos

photo 3-1Cypress Creek Hosp Exhibitor Enaxis Major Sponsor photo 1-1 photo 1-2photo 3-2

Murphy Discusses ‘Helping Families’ Legislation at APA Assembly

Patients with serious mental illness have a right to treatment and a right to get better. That’s what Rep. Tim Murphy (R-Pa.) said in an address this morning to the APA Assembly, in which he discussed the bill he is sponsoring in Congress titled the “Helping Families in Mental Health Crisis Act” (HR 3717).

The congressman received a standing ovation following an impassioned talk in which he discussed the need to fix this country’s broken mental health system. Prior to his address, Assembly members viewed a brief video of Murphy grilling an official with the Centers for Medicare and Medicaid Services about the administration’s proposal earlier this year to eliminate antidepressants and antipsychotics from the Medicare Part D prescription drug program’s six protected classes of clinical concern. That proposal was rescinded after vigorous protests from Murphy, APA, and other medical and mental health organizations (psychiatric news, March 6, 2014).

A licensed clinical psychologist, Murphy described his own experience working as a volunteer at Walter Reed Medical Center with veterans with PTSD. He also recounted case examples from his home state of Pennsylvania of individuals with serious mental illness, unable to access treatment, who later killed themselves or others.

In January 2013, not long after the Newtown, Conn., shooting, the Energy and Commerce Subcommittee on Oversight and Investigations (of which Murphy is chair) launched a top-to-bottom review of the country’s mental health system. The investigation revealed that the approach by the federal government to mental health is a chaotic patchwork of antiquated programs and ineffective policies across numerous agencies.

In response, Murphy wrote the Helping Families in Mental Health Crisis Act.

–Psychiatric News Update

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I am My Brother’s Keeper

I first came to understand mental illness through my brother’s experience.

Never understanding what mental illness was until years later, I came to know my brother’s diagnosis as severe bipolar disorder. Watching my brother struggle is similar to observing a roller coaster: he will have manic episodes where he speaks quickly and paces up and down hallways. Then he will have depressed episodes in which he will lie in bed for days with a curtain drawn. There was one incident in which my brother stole my car and disappeared for two weeks and I did not know where he was.

Current HIPPA laws kept me from trying to help him. The HIPAA privacy rule kept me completely locked out of his care and I was powerless to help him.  The first time I encountered this roadblock was when my brother was admitted to the psychiatric hospital a few years ago. I went to visit him but he was gone. The nurse told me that she couldn’t give me any information about my sick brother’s whereabouts because of the privacy rule. So I was left to worry about where he was and what he might be doing. It was a wake-up call to realize that to help my brother, I could only count on myself and not the system.

For years I have been told by mental health professionals that my brother is an adult and can take care of himself. However, the truth of the matter is that he is not mentally capable of taking care of himself as I am now finally his caregiver.

I am my brother’s keeper.

–The Treatment Advocacy Center

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Steps Forward in Maryland

Our neighbor Maryland has long been among the very worst states in the union for those who cannot seek or agree to essential treatment for their severe mental illness. Marylanders in this condition (and the families who love them) currently face a tragic triple whammy:

1. A hospital commitment standard requiring a finding of “danger to life or safety,” which is often interpreted to slam the hospital doors on anyone who doesn’t appear imminently violent or suicidal;

2. The notorious “Kelly Decision” of 2007, in which the Maryland Court of Appeals ruled that a patient committed to a mental hospital who refuses medication cannot be medicated over objection without evidence that the person poses a danger while in the hospital, irrespective of the danger the person would pose in the community if released in his or her current unmedicated state;

3. The lack of an assisted outpatient treatment (AOT) law to help those caught in the revolving doors of the mental health and criminal justice systems to survive safely in the community. (Only four other states share this dubious distinction.)

With the strokes of several pens yesterday morning, Maryland Governor Martin O’Malley gave hope for a brighter day ahead. The governor signed two bills championed in this year’s legislative session by the Treatment Advocacy Center and our indefatigable partners in NAMI-Maryland.

One bill, HB 592/SB 620, nullifies the Kelly decision (effective October 1) by amending the state law interpreted by the court. The new language makes explicit that a committed patient may be medicated over objection if a review panel finds the patient’s mental illness symptoms cause dangerousness in the hospital, caused the dangerousness that led to commitment, or would cause dangerousness if the person were released.

The second bill, HB1267/SB882, represents progress towards addressing the two other glaring flaws in Maryland’s treatment laws. It directs the state’s Department of Health and Mental Hygiene (DHMH) to convene a work group to examine AOT and deliver to the legislature by November 1, 2014 “a proposal for a program that … best serves individuals with mental illness who are at high risk for disruptions in the continuity of care.” It further directs DHMH to “evaluate the dangerousness standard for involuntary admissions and emergency evaluations of individuals with mental disorders, including … how the standard should be clarified[.]” (DHMH is already on record acknowledging the state’s need for both AOT and a consistent, more flexible interpretation of “danger to life or safety.”)

For now, we’ll say “one down, two to go,” with optimism that by this time next year, Maryland will stand proudly among the best states in meeting the needs of those whose anosognosia puts voluntary mental health care out of reach. We offer heartfelt thanks and kudos to the Maryland lawmakers who this year carried the mantle of this too-often-voiceless population: Senator Dolores Kelly and Delegate Dan Morhaim of Baltimore County, and Senator Mac Middleton and Delegate Peter Murphy of Charles County.

–The Treatment Advocacy Center

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