Pete Feigal sent me another set of stories now posted to Dare To Dream Forums. Pete has been a regular contributor. He is now blind, mostly wheelchair bound, but still one of the most inspirational speakers I've ever heard on the topic of recovery from disability.

Pete Feigal has been battling clinical depression for 30 years, and MS for the last 19. He has spoken nationally over 1400 times in the last 11 years for schools, colleges, prisons, corporations, churches, medical professionals and police forces around the nation. He is a native Minnesotan and has been, in his checkered past, a professional Shakespearian actor, an aviation and motorcycle artist, and a motorcycle drag racer.

He describes his newest contributions.

"Why There Are No 'Whys?'" came from all of the senseless killings we've had lately, and from when I'm asked to speak afterwards and people want to know "why."

"The Light That Failed" is a life-changing moment in my life, when I went totally blind almost exactly a year ago.

"Open Letter To A Friend With Depression." I'm contacted every day by folks that are looking for help, inspiration, resources, for themselves or a loved one.

"The Stars Are The Diamonds Of The Poor," is a two parter where I interviewed almost 100 folks with different struggles, esp mental illness, asking them for their insights about money, living without it, and what they've learned are the curses, but also the gifts.

Pete's web site
You can buy Pete's art!

John Nash, Nobel prize winning mathematician and subject of the Oscar winning biographic movie "A Beautiful Mind", delivered a speech to the American Psychiatric Association's annual conference. He suggests that schizophrenia represents just one facet of the diversity created by evolutionary development of human beings.

Mind Hacks

In his talk, he suggested that mental illness may be the result of the otherwise healthy evolution of mental diversity. Applying his specialized understanding of "game theory" to an analysis of mental illness and his own experience with psychosis, the 79-year-old Nobel Laureate suggested that severe mental illness exists in nature as a consequence of the diversification of species, and that it may serve the needs of adaptation by its not infrequent association with genius.

Lightening the Load for Mentally Ill Parents

The depression had lasted long enough that Loran Kundra thought she should explain her "crying sickness" to her 3-year-old daughter. Kundra had spent days in bed, staring for hours at the same spot. Little Megan had seen her cry too often. Kundra feared the child would blame herself. So Kundra sat Megan down at the top of their stairs at home in Wayne. "Sometimes Mommy cries and gets upset just the way that you cry and get upset," said Kundra, who was diagnosed with bipolar disorder soon after the birth of Megan's little sister. "But sometimes Mommy cries and there really isn't a good reason for why I cry."

It wasn't a conversation the average parenting book prepares you for. Or, for that matter, the average book on mental illness. Kundra, a lawyer who now helps with psychiatric research at the University of Pennsylvania, discovered after her diagnosis that parents with mental illness have few resources to turn to. "There is a huge gap in addressing the needs of parents with mental illness and their children," says Nadia Allen, executive director of the Mental Health Association of Orange County, N.Y. It runs the Invisible Children's Project, a program for mentally ill parents that serves about 18 families.

In a 2000 national survey, Joanne Nicholson, a University of Massachusetts Medical School psychologist, found fewer than two dozen programs specifically targeted at parents with mental illness, though many cities try to piece help together. Many caseworkers, she says, don't even ask mentally ill clients whether they have children. "There's a lot of things we didn't anticipate with the deinstitutionalization movement, and this is one of them," says Edie Mannion, program manager of the Mental Health Association of Southeastern Pennsylvania's training and education center. Regarding people with mental illness, she said, "We forgot that they might go out and have relationships and have children."

Its a sad story about Kundra and her daughter Megan. Talking to children about a parent's mental illness is a necessary but difficult task. The approach Kundra used seems perfectly appropriate for a three year old. The older the child is, the more information they need. But they need no more information than what they need to know to avoid the pitfalls of children of parents with mental illness:

• Children of all ages are likely to blame themselves for their parents problems of any kind, including mental illness.
• Children will take responsibility for mood changes of their parents.
• Children will see miss-treatment as something they deserved to keep the parent in high esteem.
• Children see their parents feelings are more important than their own.
• Children will do more than they should to help their parent's burdens. Often, this means they neglect their own learning and social development to take care of the parent.
• The cost of caring for a parent is MUCH more than just falling behind. They often suffer from depression, chemical abuse, poor judgment, have destructive relationships as adults.

Look for updates on this one. I'll add new thoughts when they come to me.

Mentally ill more likely victim than perp

Researchers at the university's Feinberg School of Medicine say more than one-fourth of individuals with severe mental illness were victims of violent crime during 2004 -- a rate nearly 12 times that of the general population. Depending on the type of violent crime, prevalence was six to 23 times greater among people with severe mental illness than among the general population, said lead author Linda Teplin, a professor of psychiatry and behavioral sciences at Feinberg.

In addition, Teplin said the annual incidence of violent crime in people with severe mental illness who live in the community is more than four times higher than that in the general population.

Here is two rather disturbing bits of information. Persons with mental illness are as vulnerable to predators as we thought they might be.

Secondly, we have statistics that say persons with mental illness are four times more likely to commit crimes than the average population. I remember hearing years ago that persons with mental illness were no more likely to commit a crime than the average person. What has changed? Research methods? Or is diagnosis spreading appropriately into the Correctional system? I suspect it's the latter.

Not only have I seen a higher proportion of chemical abuse but criminal records among my more recent clients. It is part and parcel to working in an urban center. I'm also convinced, the same sorts of treatment can be just as helpful, at least for those who have a functioning conscience. But we must be aware as both providers and consumers, there are people who do not have a adequate conscience that we can not trust in our treatment settings.

Enlightenment Bulletin Board ::'Complicated Grief' Goes Beyond Depression

Researchers estimate that 10 percent to 15 percent of the surviving relatives of people who die naturally experience complicated grief, Prigerson said. She said people who lose someone they were emotionally dependent on are at greatest risk.

She is working to get the disorder recognized in the American Psychiatric Association's next edition of the Diagnostic and Statistical Manual of Mental Disorders. The next DSM-V will be published in 2012. Dr. Michael First, a Columbia University psychiatry professor and member of a committee that will decide what goes into the DSM, said the panel will consider whether complicated grief merits its own designation. "From what I've seen so far, it's certainly not an off-the-wall suggestion," First said. He said doctors see patients all the time, especially the elderly, who never get over the death of a loved one.

Dr. Richard Glass, a psychiatry professor at the University of Chicago and deputy editor of the Journal of the American Medical Association, said studies have shown that people suffering from complicated grief do not meet the criteria for depression or post-traumatic stress, although some of the symptoms overlap. "The evidence so far indicates that there really is something different here," Glass said.

The most recent study, published Tuesday in JAMA by Shear and her colleagues at the University of Pittsburgh, examined different ways to treat complicated grief. Researchers found that 51 percent of patients treated with a therapy developed just for the symptoms of complicated grief showed improvement. So did 28 percent of complicated grief sufferers who underwent a treatment commonly used for depression.

Golebiewski, 56, of North Fayette, was given the therapy for complicated grief as part of the study. It included being tape-recorded while he talked about his daughter's life and death, then listening to those recordings. He said after listening to the tapes repeatedly, he developed ways of dealing with those feelings. "I was able to visualize her again in life and as happy as she was and the cheerful person that she was," he said. "I was able to see her there in that context."

Out standing research has documented our innate ability to help ourselves recover from grief. I believe people have the ability to facilitate recovery from many mental health disorders. The problem is that we create many obstacles that prevent our natural ability to recover from working as it should.

For many years, grief groups have shown their effectiveness. One of the natural processes that emerge from these groups is that each member to review their thoughts and feelings about their losses repeatedly throughout their treatment. The group, with the help of a therapist, helps the member identify recurrent themes in their stories that suggest strategies to better cope with their feelings. This emotional process facilitates changing the memories about the loss, so that when inevitably, the survivor remembers their loss again, they remember the healing thoughts and feelings as well.

A similar process may be helpful recovery from memories caused by singular traumatic events. However, there are other issues in post-traumatic stress that need attention as well.

The biggest obstacle to recovery from grief is denying or avoiding the thoughts and feelings that come with the memories. It is not possible to just forget something so emotionally important to us. Sometimes our lives interfere and limit the time we have to grieve. At other times, some believe it's best not to think about it.

It's very important that we set aside a significant amount of time, preferably daily to devote to recoverying from grief. A photo album, sorting through the belongings of our loved one, as painful as it is, can be very helpful. If such efforts are not helpful, the help of a qualified mental health professional may be necessary.

Self-directed care might seem like a no-brainer to some. After all, doesn't everyone direct their own medical care? In the case of severe mental illness, too often, this hasn't been the case. Too many mental health services assume that consumers of services don't possess the judgment to direct their own care. For too many, accessing mental health services is a dehumanizing power struggle where the people who are trying to "help" are using coercive means to take the right of choice away.

I've been working as a provider in the mental health system for thirty years. I've seen the system evolve toward more choice, from a system that was largely doctor directed to one that at least promotes self-determination without really facilitating very well.

In the more distant past, consumers were "protected" from the responsibility of their actions by being committed to a state hospital based on little more than a family's request. Care in these hospitals was abysmal, amounting to little more than warehousing people who, for the most part, had been little more than a nuisance for the family and community.

Gradually, individual responsibility was returned to consumers partly by legal civil liberty changes and partly by what sounded like a great idea, "Deinstitutionalization". The effort was proposed as an advance in consumer rights designed to create the support system to enable those persons with severe mental illness to live independently in the community. But like all seemingly good ideas in social policy in recent years, it was executed as another means to save tax dollars. Community services were horribly underfunded. Many of those released from institutions instead ended up homeless and in prison.

Many fixes were attempted over the years. Medications have improved dramatically. Many innovative, consumer-driven and cost effective services have been created and have successfully enabled many consumers to live independently. But the complicated, frustrating and dehumanizing social welfare system has created huge obstacles to receiving emergency and on-going disability payments and medical care. Eligibility criteria and means testing has created a gauntlet of paper, coercive self-disclosure, and largely inadequately trained social service personnel that have prevented many of those most in need from reaching help.

Case management was sold as a solution to this problem. Case managers were seen as a broker of services and resources. Provided by trained and educated staff, case managers were expected to enable consumers to access the services they need, provide guidance and supervision when the courts felt the need to intervene, and ultimately protect counties from an ever increasing liability of a growing population of dependent disabled consumers.

Again, what sounded like a good idea didn't work so well. Case management has become a major cost to the system. Case managers spend most of their time navigating the same convoluted social welfare system their clients used to struggle with alone. Consumers with the most serious disabilities often perceive case managers as at best minimally helpful, at worst, the means by which their choices are limited and their rights are restricted.

Despite all the effort, still the lion's share of the mental health dollar goes to institutions: state hospitals, private hospitals, prisons, and the county infrastructure of social services that serve an ever growing number of eligible consumers and an ever shrinking proportion of the most seriously disabled consumers. The mental health system suffers the same risks of any large organization to become too system-centered, taking better care of itself than the people it serves.

If consumers could choose their own services, fund their own alternative services and needed transportation, I know many would choose to purchase many of the same services they receive now including case management. But the dynamic would be different, consumer-driven services would have to better facilitate self-direction and empowerment or close their doors.

Stigma and discrimination still limit options for recovering consumers. Jobs are scarce. Employment support has all but disappeared with recent cuts. Services are over-utilized, waiting lists are growing, and financial resourses to pay for services are shrinking.

A major change is needed. Taxpayer revolts will force dramatic change soon. We need to act now to facilitate a more planful and orderly transition of services. It's time to empower consumers to direct their own care. Consumers of mental health services as a whole are no less capable of making their own choices than most of the rest of the world.

Self-directed mental health care is an idea whose time has come. Despite the disclaimer from SAMHSA, its prominent position on their web page, the dollars being spent to support its promotion says to me the DHHS wants to make it happen. Again, its a concept that makes sense. Other changes to allow user-friendly access to the financial supports and medical care are needed as well. Stigma and discrimination needs to ended once and for all.

My only fear is that after the ax gets done falling, will their be enough funding to make it work?

While I agree with the concept, some of the assertions contained in the material are strongly worded and sometimes inaccurate. The first statement in this article is a good example. The mental health system has been facilitating recovery for many years. I've not seen the data that says we've failed "most". But I know we've been unable to effectively help many of those most in need. Too many people are experiencing the revolving door of coercive hospital care, with too few means to become empowered to learn to make their own choices. The school of hard knocks is sometimes too heavy a hand for those most vulnerable.

Consumer-Directed Transformation to a Recovery-Based Mental Health System

The views, opinions, and content of this paper are those of the authors and do not necessarily reflect the views, opinions, or policies of the Substance Abuse and Mental Health Services Administration or the U.S. Department of Health and Human Services.

Today’s mental health system has failed to facilitate recovery of most people labeled with severe mental illnesses, leading to increasing expressions of dissatisfaction by people using services, their families, and administrators. Only a fundamental change of the very culture of the system will ensure that the changes made in policy, training, services, and research will lead to genuine recovery. In accordance with the President’s New Freedom Commission on Mental Health report, mental health consumers and survivors, representing diverse cultural backgrounds, should play a leading role in designing and implementing the transformation to a recovery-based mental health system.

This paper provides an outline of how consumers/survivors can catalyze a transformation of the mental health system from one based on an institutional culture of control and exclusion to one based on a recovery culture of self-determination and community participation. At the national policy level, this paper recommends that consumers develop and implement a National Recovery Initiative. At the State and local policy levels, State and local recovery initiatives are recommended. On the direct service level, the paper provides a road map for developing services, financing, and supports that are based on self-determination and recovery.

A recovery-based mental health system would embrace the following values:

* Self-determination
* Empowering relationships based on trust, understanding, and respect
* Meaningful roles in society
* Elimination of stigma and discrimination

Changing the mental health system to one that is based on the principles of recovery will require a concerted effort of consumers and allies working to bring about changes in beliefs and practices at every level of the system. The building of these alliances will require the practice of recovery principles of trust, understanding, and respect by all parties involved.

For those of you who have broadband and prefer a video presentation, here is a link to a previously recorded video conference on Self-directed Mental Health Care.