Lifting the shroud off mental illness

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I wasn't sure where to put this so here it is.

NAMI New Hampshire model of excellence in the nation
Putting hope and recovery into vocabulary of mental illness

Lifting the shroud off mental illness

By LAURA POPE

Showcase Correspondent

"In the last 30 years, there has been a tremendous shift in the mental health world," said Ken Braiterman, a mental health care advocate with NAMI-NH in Concord. "The shift has been from a model of institutionalized adults who require maintenance, receive bad medicines and learn the helpless behavior in institutional settings where the best outcome is staying out of the hospital and perhaps getting a part-time job bagging groceries to one where the mental health system is one of actual recovery. It has taken an entire generation to transform this care system from maintenance to recovery."

In New Hampshire, the National Alliance for the Mentally Ill or NAMI, is one such example, and some say the best example, of the changes in the mental health care front.

As one of several independent, non-profit consumer groups in the nation geared toward education, advocacy, support and programs for the mentally ill and their families, NAMI-NH has paved the way for increased awareness and recovery and in the process, offered an educational program called "In Our Own Voice" that empowers its participants and those who listen to them.

The speakers’ program, which began last December and Braiterman coordinates, offers public access to a speakers’ bureau of 20 individuals recovering or recovered from severe mental illness, and is one of approximately 40 chapters around the country.

"We were hoping for about 20 speaking engagements in a year’s time, but we’re already at 40. These trained speakers frame the topic of mental illness in the form of survival stories told all over the state at schools, colleges, churches, businesses and mental and health care settings to advance the truth that people with mental illness do get well, stay well, have productive lives and successful families," explained Braiterman, a mental health care advocate from Penacook who worked as chairman of the state mental health consumer council for four years before signing on with NAMI-NH.

The National Alliance for the Mentally Ill in New Hampshire was founded in 1980 by Peggy Straw, the president of her local mental health care center, with the support of a few New Hampshire families frustrated with the existing mental health care system. This Granite State visionary forged an organization, as did others leaders from states across the nation, that proved a prime example of the cooperation possible between existing agencies such as our N. H. Division of Mental Health and a non-profit advocacy group, www.naminh.org.

The inspirational and hopeful messages broadcast by In Our Own Voice speakers is an important component to recovery while changing the negative impressions and stigma of mental illness in the minds and hearts of the thousands who attend the talks.

In Braiterman’s mind, education is a large component of mental illness treatment and recovery.

"A 20-year study of schizophrenia has reveals that 10 percent of the population will have the disease. One-third of these people will have one break and get better; one-third will have periodic breaks and one-third will become chronically ill and can manage on medication and other therapies. How chronic it is varies. At one time schizophrenia was considered a disease that got steadily worse and it turns out not to be true. New medications, coping skills, a support system along with faith, discipline and patience, the right diagnosis and receiving the right kind of help will lead to recovery. Often the mentally ill are diagnosed or assigned a label that is not correct or very scientific and as a consequence, they may not get the treatment they need for years. The biggest factor to recovery, however, is acceptance of the condition once it has been identified."

The recovering and recovered mentally ill count as a resource to families and individuals dealing with mental health issues as well as professional mental health care providers.

"People with mental illness have gone for years being invalidated and not listened to by their caregivers," said Braiterman. "With this program, they are now being told how courageous they are which gives meaning and significance to their pain and their ability to turn that around and help others.

"Having a mental illness is not a life sentence or a death sentence," insists Braiterman, who also teaches a 40-hour coping skills workshop created by Brattleboro, Vt. mental health pioneer, Mary Ellen Copeland, to recovering individuals.

"Copeland organized a system of recovery principles, coping skills and relapse prevention," he explained. "She trained many people in New Hampshire, including me, to teach the workshop."

Braiterman describes the workshop as being a very practical plan that includes teaching individuals self-awareness skills such as having a daily maintenance plan, an early warning sign plan; a way to cope when a trigger sets off warning signs as well as teaching people to change their bad thinking about their disease.

"Someone with mental health issues, even if they are diagnosed correctly, taking good medicines and getting therapy might still have problems with self-esteem and isolation so changing negative thinking is an important part of the workshops."

Kim Wedel, 44, of Somersworth is another potent advocate for mental health in the state. Working as a teacher of wellness recovery action plans, an orientation leader and training committee member for mental health care professionals at a Dover mental health care center and a speaker in the In Our Own Voice program, she nevertheless lists her degree as N.S.I. – no significant initial.

Diagnosed with D.I.D. or disassociative identity disorder, formerly called M.P.D. or multiple personality disorder, Wedel introduces herself as a recovering individual when she takes the podium as a speaker. "I have been assigned letters of the alphabet for so long, it doesn’t matter anymore," she says with a laugh. "My diagnosis is not the important part of what I have to say."

Wedel’s journey to recovery began four years ago when she took the Copeland workshop course at the Strafford Guidance center in Dover, now called Community Partners, hosted by Ken Braiterman. Eventually, Wedel would earn her own workshop teacher’s certificate at Copeland’s school in Vermont.

"Last December, Ken asked me to participate in the ‘In Our Own Voice’ training and I have given talks at churches, colleges and parents groups since then."

Wedel tells listeners about her dark days of being ill before she knew what was wrong, accepting her diagnosis and treatment, what recovery means now and what it was then, what hopes she has and the accomplishments she has achieved.

"I’m not recovered but recovering, and my accomplishments far outweigh the problems. The hardest thing I have to deal with is to ask for help. I tell people in my talk about acceptance and non-acceptance issues; that there is a lot of stigma from within the mental health care system."

The two-hour presentation she gives, which includes a NAMI video, allows Wedel the chance to change opinions and enlighten the book-educated health care giver.

"One of the best talks I gave was at a college for those students thinking about social work careers and those already in social work. I stressed the importance of remembering that a mental illness diagnosis shouldn’t be the foremost label; that people are people first, not an illness. And from my point of view, a student of social work or a recovering person may want to hear what I have to say because I’ve been there. If you’re going to cooking school, you’d want to hear from the person, the chef, and not just learn from books."

NAMI-NH’s programs and resources for families, individuals, the general public and mental health care providers have made it a national leader, said Braiterman, who adds that this most lauded bellwether has been under attack the last two years.

"The state – specifically Gov. Benson and John Stephen, Commissioner of Health and Human Services – abruptly ended paying for these workshops taught in 15 peer support centers located within community mental health care centers all around the state. They killed the contract in July, extended it for three months and killed it again in September. Over 500 families are affected; their NAMI advocate is now gone. Families whose loved one needs special services and are struggling with the school system, for instance, have had a NAMI person there to advocate for them for the last 15 years. Now this very advocacy program has been given back to the mental health care centers, but without any budget to pay for them. Which means they will not be used. The state had taken these special programs out of mental health care centers years ago and given them to independent non-profits like us because sometimes the adversary is the mental health center.

"One of the previous two Commissioners was a health care professional and the other became a big supporter of peer support, an alternative treatment that saves the state money. Now the cuts are in prevention and early intervention which makes no sense at all – its pennywise and pound foolish."

Wedel hopes cuts in NAMI programs will not affect In Our Own Voice, who hopes her story, and the story of others in recovery, will continue to put faces to the many success stories NAMI has to share.

Source http://www4.fosters.com/november_2004/11.04.04/showcase/sb_1104.asp

 

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Lifting the shroud off mental illness
A decade in the making, this one-man, nationally-touring monologue shares the experiences of one man, his siblings and father living with schizophrenic mother

NAMI New Hampshire model of excellence in the nation

By LAURA POPE

Showcase Correspondent


Michael Mack’s ‘Hearing Voices (Speaking in Tongues)’ takes place Friday evening, Nov, 5, at the Middle Street Baptist Church at 18 Court Street in Portsmouth at 8 p.m.
Spoken word performance — whether a play or poem — has at its heart the power to transport, entertain and transform those who witness and perform it.

Such is the case with "Hearing Voices (Speaking in Tongues)," a 90-minute play/monologue written and performed by Michael Mack, a Boston-based slam poet champion, touring performer and MIT grad.

Serving as an entertaining, compelling and informative narrative about schizophrenia, "Hearing Voices" has earned Mack national acclaim from both general public and mental health care professional audiences. An unpremeditated poet, Mack, formerly a tech writer, gravitated more and more in slam competitions to poems about his early years as the oldest of four children dealing with his mother Annie’s schizophrenia.

Studies reveal that 1 in 100 individuals will be diagnosed with the disease characterized by auditory or visual hallucinations, delusions, psychotic behavior and many times, depression. Periods of lucid and calm behavior are periodically interrupted by abrupt swings or breaks into distinctly chaotic or wild behavior, though new approaches to recovery have come to the fore that include better medicines and psychotherapy along with a united front of support systems and coping skills.

By 1997, Mack began performing just these poems, "Hearing Voices", accumulated over a decade, all over the country with the intent of casting light on how this disease affected him, his three siblings and father. Detailed in the poems are Annie’s lucid times and hospitalizations, the horror of crushing drugs and electro-shock treatments, visitations to see her and the way he and his family managed to stay together. After increasingly longer stays in hospitals and stints on the street, Annie Mack eventually found solace in a Baltimore group home where she lived out the last five years of her life. She died of cancer three years ago.

The performance, sponsored by NAMI-NH, the state chapter of the non-profit National Alliance for the Mentally Ill, takes place Friday evening, Nov, 5, at the Middle Street Baptist Church at 18 Court Street in Portsmouth at 8 p.m. Tickets are $16; for ticketing information call 436-3264, fax 431-5570, or email seacoastnami@eml.cc. A question and answer program follows the performance, led by a panel consisting of Mack, the Reverend Vivan Martindale of the Middle Street Baptist Church and Jackie Ellis, a leader of the NAMI-NH Support Group.

Describing himself as "shy and retiring," it is hard to imagine Michael Mack as a two-time slam poet champion representing Boston in national contests.


Michael Mack
"Being a poet was a big surprise to me," said the one-time student of business at the prestigious Sloan School at MIT. "I had dabbled in the arts; sang and played guitar. I really didn’t have any inkling of my interest in writing and poetry. I took a poetry class to write better songs."

His experience in Fanny Howe’s poetry class would rattle his cage; instigate him to take a year off to think about what he really wanted to do, which was to change his college major from the world of finance and economy to the world of words. Mentored by Pulitzer Prize-winning New Hampshire poet, Maxine Kumin and Nobel Prize laureate Seamus Heaney, Mack followed his heart and memories to write poetry.

"I found poetry was an outlet for things I had kept to myself for years," he recalled. "It is very therapeutic way for me to frame and to see from an adult perspective the formative events of my youth; to give shape and meaning to these events as I hadn’t done before."

Since that first immersion in Howe’s poetry class in 1986, Mack explored various topics to ground his poetry, but he invariably moved toward the personal topic of growing up in a household struggling to understand and cope with his mother’s disease.

"I found myself returning to the topic of my mother’s mental illness and my family’s experiences again and again. The poetry became a labor of love and a transformative experience," he said. "I found that this focused interest on those early experiences brought me to a compassion and understanding I would not have had otherwise."

Mack depicts poetry performance as a "very energizing experience. As a younger performer I was very much into the high energy and high drama of performing. When I was competing early on, I would perform a few pieces about my mother. They had a lot of energy and drama and always netted high scores. Somehow, I felt that I wasn’t doing a service to the higher story this way, by continuing the stereotypes or stigma of mental illness. The only way to do justice to the topic in a larger context was to perform with love about a spiritual journey."

"Hearing Voices," Mack explained, "is always in flux, always a work in progress even after 15 years of writing poetry. It would be more like a two-and-one-half hour show if I included all the material I’ve written. I’m constantly tweaking and exploring the events behind what I’m saying."

Audience response to "Hearing Voices," which is excerpted in his book of poems called "Homework," has been one of the major reasons Mack has increased his performance schedule to approximately 25 performances per year.

"The public usually has a reason for coming to the performance," he added. Most people would not come to a show about mental illness as they wouldn’t consider it entertainment," he confided. "But I have worked it as an entertaining, educational, serious art."

There are those who would attend his performance just to witness a champion poet at work, while others come out of curiosity or because they know someone or have a relationship with someone dealing with mental illness. In "Hearing Voices," Mack performs poetry but also speaks informally and clinically about several aspects of schizophrenia.

Throughout the staging, Mack instills a vivid snapshot of one family’s journey with the disease, from his father’s devotion in caring for his wife, Annie, paying for her treatments and keeping the family together and the many times he and his siblings stayed with a family in the neighborhood to trips to various hospitals and calls from Annie when she was homeless.

Mack cites the particulars of Annie’s life and illness with great clarity and the reverence of a son for a beloved mother.

"She was first diagnosed with schizophrenia in her late 20s after a bout of post-partum psychosis with the birth of her fourth and last child. The diagnosis changed over the years to bipolar or manic depressive disorder to schizoaffective disorder."

The poet further explains that the term schizophrenia was coined at the beginning of the 20th century and covered a whole spectrum of illnesses. Different diagnoses or labels have surfaced as medical advances and brain science have more accurately refined the identification of mental illnesses.

"I was five or six when she was first hospitalized," he recalled, "and 10 when my parents separated. Her stays in the hospitals became longer as time went on. My father went into debt and eventually he and my mother were forced to deal with the state hospital system in and around Washington, D.C., which was not so great. At times, she would be on the street.

"Thorazine was the mainstay drug in the hospitals at the time and it made her into a shell of her normal self. On the street she could be wild and loud but to me that seemed better than her being in a drugged or subdued state. Today, the medicines are much better, the therapy is helpful and there is so much promising stuff happening with diagnoses, treatment and recovery."

Mack is most grateful for the "dignified" group home setting where Annie spent her last years.

Mack points out that while writing and performing poetry has been a great healing process for him, his siblings have also found ways to come to terms with their childhood experiences relating to Annie’s illness.

"For many years, my older sister would have nothing to do with mama. She was frightened about the memories and what mama would be like. Then she started tagging along on visits to mama with our youngest sister. Eventually, my older sister became mama’s primary caregiver and emotionally connected."

Throughout the touching and alarming scenes, the descriptions of despair and hope in "Hearing Voices," Mack’s biggest hope is to "convey a tremendous quality of love."

Source http://www4.fosters.com/november_2004/11.04.04/showcase/cov_1104.asp