Archive for June, 2011

ON life anew. another look.

June 30, 2011

Life is about more than what is hard, difficult, and painful.  It is about more than making things less hard, less difficult, and less painful.  If you have a mental illness (or mental health issues or whatever politically correct term you prefer) the management of symptoms is essential for a better life.  It is not, I believe, sufficient and that is where the concept of recovery comes in. Saying that recovery is simply symptom management is like saying driving a car is about having oil and gas in the car… It is, but it is about much more than that.

Mental illness has devastating impacts on daily life.  It makes everything harder.  But the experience of mental illness goes past even this.  It becomes the lens through which you see yourself, other people, and make decisions about what is important and possible in life.  It defines what is real and what is illusion.  Most often it tells you that you are centrally flawed as a human being and much of what is available to other people is not available to you.  It tells you the only question in life is what bad thing in life is going to happen next and the only task in life is to get use to it and accept it.

Often the message that people seem to get from treatment is that it is all about symptom management. And even that is not always real effective.  People are left more with a sense of how they are limited than in the discovery of what is possible.  I believe the reason so many people opt out of the mental health system is not because they dont buy the problem.  I think often they simply lose faith in the solution.

What does it mean to find a better or new life?  What does recovery mean?

There is something in life worth getting.

  1. You can get from the beginning of the day to the end of the day without disaster.  Life is not so stressful that the events of daily life are a never-ending struggle.  Your days are not a perpetual wreck getting ready to happen.  Your choices are more than numb out, be on ever vigilant guard,  or medicate your experience.  There is more to life than being anxious and fearful about what is about to happen or being angry or guilty about what did happen.  This is the initial step in recovery and without progress here you dont get much farther.
  2. Other people are more than a source of deprivation or threat.  You begin to repair damage relationships and establish others.  Life becomes what you do with other people rather than what you try to do despite them.
  3. You begin to establish your own sense of personal significance.  There is a growing sense of purpose.  You are about something.  And life is about making that real.  It is a combination of your talents and interests and the needs around you.  You become part of a larger something.  You begin to get a growing sense of completion.
  4. Many things may continue to be hard or difficult, but life is defined more by the opportunities presented to you, rather than the threats presented.  Hard times become more survivable because you know “something better is coming.”

You have something worth giving.

  1. You count.  What you think, what you feel, what you do makes a difference to others and in the scheme of things.  This is one of the biggest lies told the mentally ill.  “What you do doesnt count anymore.  You will always be a source of disappointment for yourself and for others.”  It is the message that is at the heart of most stigma and one of the most crippling experiences that someone can have.
  2. Others start to see you as a source of opportunity in their lives and not a threat or source of  threat.  It is almost impossible to have any sense of hope in life if the people around you are not hopeful about you.
  3. Success builds momentum in your life and your first response to challenge or stress is not resignation, but anticipation. You begin to have faith in yourself.

Life is safe

  1. This does not mean that it is not dangerous.  It does not mean that it is not painful.  It does not mean that problems do not occur.  It means that you see life from a new context.  Each problem is not forever.  Each problem does not mess everything up.  Each problem is not an indictment of you or the people around you.
  2. It means fundamentally that you know that bad times are real, but that they are not the only thing real.  It means you know that bad times can be coped with, or endured and that good times can be created and treasured.

Someone cares

  1. You are loved and you love.  You are seen as who you are and treasured for who you are.
  2. Life is not defined by loneliness and the feeling that you are forever Robinson Crusoe.
  3. Not only are you cared for but you can trust that care and what it means.  And others can trust your care and commitment to them.

These are some of the things that I think define recovery.  Life can better for virtually everyone.  Life anew can be yours. It can be mine.  It can be something we share with each other and help each other to find and grow.  Life has a promise that is real and no diagnosis, label, or judgement disqualifies you from laying claim to that promise.

Bless you.

On a culture of recovery

June 30, 2011

Many people look at the state of the mental health system and say what we need is a culture based on recovery.  But what would that involve?

Every culture, every group, every model is based on its assumptions about what it believes to be true.  A recovery based system would be no different.  It would make every effort to “prove” it was true, but even that proof would be interpreted in light of its assumptions about what is true and real.

What are some of the assumptions that a recovery based system makes?

  1. Individuals matter.  No degree of impairment or difficulty make them matter less.
  2. If an individual is important what is important to that individual is important: his thoughts, feelings, goals, aspirations, and interests.  No degree of impairment makes those things matter least.
  3. If an individual matters then recovery is not about what others develop for him, but about what he chooses for himself.
  4. The primary thing that is recovered is the ability to make informed decisions about life based on the tools acquired, the knowledge gained, the success experienced, and the continuing care and support of others.
  5. Mental health professionals are often essential for recovery, but their appropriate role is as a consultant or coach and not direct supervisor.
  6. Recovery assumes that hope is a real thing.  Life can and should be a movement towards better things.  The steps may be slow and require much in the way of patience, but no matter how slow or small they are they are real and should be valued and treasured.
  7. Recovery assumes that mental illness does not cause you to lose anything essential to being a human being.  Mental illness may block you.  It may disrupt you.  It may damage you.  It may detour you.  It does not diminish what it means for you to be a human being.
  8. Recovery assumes personal responsibility.  It is not something done to you.  It is not something you are given as much as it is something you get.
  9. Recovery assumes that you can develop and maintain relationships with other people.  That you can love and are worthy of being loved.
  10. Recovery assumes that you can support and help others, that often, the greatest help you get is in the help you give.
  11. Recovery assumes that mental illness does not make a happy life a delusional concept.
  12. Recovery assumes that mental illness (or whatever term you choose to substitute there) is real and the pain and desperation it brings to human life is real and that everyone is entailed to the help they need to regain the life they deserve to have a chance to live.
  13. Recovery assumes that people are biological, social, emotional, cognitive and spiritual beings and recovery to be real and meaningful may have to address each of these dimensions.
  14. Recovery assumes commitment.  It is not a given, a right or an entitlement.  While very possible it assumes the commitment of those seeking it and their determination to do whatever it takes to achieve it.
  15. Recovery assumes that all of us are more than the names we are called or the labels placed upon us and to reduce us to these names or labels is inherently unfair, wrong and misses the reality of who we are.
  16. Recovery assumes that since it is an individual thing and each of us has our own burdens that recovery will vary with each person in speed, distance, and kind.
  17. Recovery assumes that while some burdens can be surmounted, others must be lived with and that recovery helps us to learn the difference and develop the skills to do each.

Some of these assumptions are commonly accepted in the mental health system now.  Some are not.  This is not meant to be an exhaustive list, but part of the movement towards a culture of recovery means helping others to see this assumptions, adopt them as a valid way of looking at things, and to press for them to become an operative part of the experience of anyone who has mental health issues and becomes involved with the mental health system

Jonathon Dosick on Recovery. Another look

June 29, 2011

Not the Only One: Recovery and Advocacy

As a peer advocate, I’m often perched on the divides (or perhaps the similarities?) between recovery and organizing for rights, at both personal and systemic levels. Advocacy is inextricably tied into my own recovery, but also poses many challenges and paradoxes.

I have spent months at hospital psych. units, struggling with horrific spells of ruminative panic and severe depression. I’m grateful to have been relatively well for the past several years. However, when under stress, I can feel the terror start to creep in.

During and after seven hospitalizations in 2001-‘02, I lived in a group home. Living under rigid rules, and with 15 other people, for four years was overwhelming. Nonetheless, it was a rich learning experience. Life there provoked a lot of anger – which I often didn’t express constructively. But most often, it hurt me more than anyone else. Vocationally, after nearly a decade in the graphic arts field, I didn’t feel my work made a difference in the world.

When I discovered that many hospitals were denying access to fresh air and the outdoors for psych patients, I realized two things in stark clarity: A) There’s a fundamental disconnect between inpatient mental health and human rights issues; and B) I could channel my anger into something constructive. I feel lucky to have found a common-sense issue unique to the world of policymaking, and it quickly became a legislative effort with considerable support.

I can’t begin to describe how much my involvement in advocacy has improved my self-esteem. I never felt I had anything to offer the world, yet I’m now seen as an expert and leader. I’m truly humbled, and allow myself to take some pride about this. Yet I am reminded daily of the potential dangers of this kind of success.

Now that we’re on the way to newfound empowerment, we must take special care not to use this power and influence divisively – against other peers, or those we feel have oppressed us. The system is broken, but revenge is not the answer. Using perceived power in this manner runs contrary to the basic concepts of recovery.

There’s a lot of polarization in our community, and I try to respect all points of view. However, I do get discouraged when I see whole groups of people painted with a single brush. This can take the form of ‘medication is the answer’ or ‘psychiatry is a means for oppression.’ It’s not that simple.

I try to apply this philosophy into advocacy. The next step in the effort I am working on, is putting a sharp focus on abuses of human rights in psychiatric hospitals, in a very public way. But we must separate the message from individual personalities. The rights problems we see are rooted throughout the health care system and in society at large. Opposition to our work comes from lobbyists for the hospital industry. It goes without saying that I’m angry at them. But were I to say, “John Smith at High Pines Hospital is a jerk,” it may satisfy anger in the short term, but ultimately closes doors to further communication. It wouldn’t advance our agenda. But saying (loudly and publicly), “Hey, peoples’ civil rights are being violated at High Pines Hospital!” focuses attention on the root problem.

I struggle to maintain balance in my life. With advocacy, there’s always more to do, and I often find myself buried under mountains of work I’ve made for myself. This often cuts into my physical and mental health. Figuring out where work ends and wellness begins is a huge challenge; I must remember to breathe; “force” myself away from the PC and relax; develop a spiritual life, and do the things I truly enjoy, away from advocacy, such as music and photography.

Advocacy is definitely a learning curve, but seeing past frustrations (which are many) and being persistent makes the victory all the more sweet.

Jonathan Dosick has been a peer rights advocate for over ten years. In 2005, he founded the “fresh air rights” movement in Massachusetts. The associated bill is in its third session of filing, with 39 state legislators and many social justice groups, locally and nationally, signed on in support. His Facebook Group page, “Civil Rights in Psychiatric Hospitals,” has over 925 members across the US and the World. He has presented at many national conferences, including NARPA and Alternatives. Jonathan works at the Central Massachusetts Recovery Learning Community in Worcester, MA, and lives in Southborough, MA. He can be reached at Jdosick@gmail.com.

Selina Glater on Recovery. Another look

June 29, 2011

The Ha-Ha Hotel and Other Tales of Psychiatry Gone Bad” – (excerpt)

White light was above me, below me and completely surrounding me. I awoke starring at the ceiling of a completely florenscent light filled room. My wrists and ankles were held down by thick leather restraints. These restraints followed me with pricks of pain, as I tried to move against them. I could feel the leather, ever so slightly, cutting into my now pale skin.  Stark white sheets, crisp with a hint of persperation, surrounded me. They were twisted around my body as though they were material used to build a cucoon. Thoughts of being a butterfly in its cucoon came to mind. But, I was no butterfly and this cucoon was anything but comfortable. The stiff table beneath me was a gurney covered with those crisp white sheets. Above me, on my left side, was a bag of fluids that had been pumping into my hungry and waiting vein. The IV was still embedded in my arm. It stayed in place as a painful reminder of the horror that had just taken place. My mind went blank and for a few moments – I was sure that I had entered a type of pergatory and a land of hellishness. In fact, in many ways I had.

I was 42 years old when these sheets surrounded me. My life had previously been filled with many accomplishments, as well as many sorrows. This day, my brain had received any number of volts of electricity passing through it. Both sides of my brain were “shocked.” This was known as electroconvulsive shock therapy. It was in fact “shocking,” but I could hardly call it therapy. My only crime was that I was seriously depressed and had been so since I was a teenager.

Deep within my memory banks were the undenyable facts. I had been a psychiatric patient my whole life. I’d never asked for this role and I didn’t much like being part of this script. My thoughts drifted back to my teenage years as I went back to sleep with that damned plastic IV line still lodged firmly in my vein…..

The wire mesh window screen was thick and kept the bright sunlight from entering my room. My mind was filled with a blackness of thought, just like the window screen, and I felt weighted down and heavy, as if in a fog. It was here, at this psychiatric facility for children and adolescents that I learned about my mood swings the early indications of bipolar dis-ease. This wire mesh also represented being cut off from the world in this place I now called “home.”

Age 14 brought depression and suicidal despair.

I had seen blackness of the spirit, of the soul, and I sought relief in music. As a violinist I was able to transcend the dysfunctional home environment and my own despondency and I was lifted to the stars. Sometimes the notes would dance off the page becoming faster and faster and more effervescent. This was a danger sign, but short lived, and again I would be hurtled down into the abyss, feeling like I must end this life as I had come to know it.

I could feel my brain chemistry change. Freedom from the depression was, and still is, like a light switch being turned on in my head. My brain “clicks” into gear and the world becomes more crisp and clear. From here the swing can move beyond comfortable to outright mania and a feeling of being totally out of control, out of touch with and apart from the rest of the world. Feelings of self confidence, power, and euphoria pervade.

Locked in isolation I was given time to think. Meds were a “mental straight jacket” they did nothing to calm me. I needed human interaction and affection. I needed to be held, to be stroked, to be told that I would be OK. As humans we all need to connect with others – not disconnect. We especially need this connection within the confines of an institution. Isolation hurts. In the process we are degraded like non humans. It would be an interesting experiment to take away the staff’s keys, put them in isolation for a day, and see just how “human” they feel.

Living with Bipolarity takes courage and the ability to fight to feel whole again. It’s a case of our over transmitting and over receiving that sets our moods swinging. Medications may not always work. In order to survive, you must speak out frequently for your rights and for your desires. You alone know your brain best.

The wire mesh screen symbolizes the isolation. And I know it still hovers out there in the periphery of my vision uncomfortably close despite the many successes I have amassed. Yet the screen also beckons those outside to look inward, to a place of acceptance for persons with bipolar dis-ease who still suffer.

SELINA IRENE GLATER is a registered music therapist, former Coordinator of Self Help and Advocacy for Santa Barbara County Mental Health Services, and an active consumer advocate. A governor’s appointee to the California State Mental Health Planning Council, she also served on the NAMI California Journal Advisory Board. Currently, Selina is the chairperson of the Governor’s Advisory Board for Sonoma Developmental Center. In January 2009 she was appointed, by County Supervisior Dave Potter, as the Fifth District Commissioner on the Monterey County Mental Health Commission

Sara Goodman on Recovery. Another look

June 29, 2011

For those who come behind me… I shed some light

My soul was withered, atrophied and dehydrated
My spirit had retreated into the hibernation
My heart was encased in a sheath of ice…
Dry ice… hurtful to the touch…
It was my defense against pain
Old wounds still hurt inside the sheath… what to do? What to do?
Anesthetize… deaden the nerve endings
Thunderbird, pot, sex, physical neglect
A vegetable I’d become… a rotten one at that
Drained of all nutritional value
Unfit for use

My brain was in pain
Exploding, imploding…
I couldn’t maintain the life I’d worked so hard to build
My life was made of straw, all surface and no substance
The Universe huffed and puffed and blew my life down
And I cowered, hands over my aching head, under the debris
Choking, croaking
Begging God to take me home…
Too chicken to take the journey on my own

My constant query was when was it going to be my turn
I woke one day to a shifted perception
Only I can take my turn
No one is going to come up and tap me on the shoulder…
OK, girlie… s’your turn now
I could choose to spend my life sending out invites to my pity parties
I felt rejected when no one even showed up to those
Or I could insinuate myself into the mainstream of life

Oh, what a task… so much to know… hard to keep up… out of breath…
DETERMINED
Because deep in my heart I believed that me at my worst was often better than some at their best
I wasn’t going down again without a fight
So I took control of my “self”
My mother’d always told me to do that… Sara, control yourself! But she never told me how

How……………… how indeed
I started by dusting off my brain
Examining the flotsam and jetsam
Exploring my values
Hugging my monsters
Addressing my traumas
Maintaining a gratitude attitude
Exploding the myths that had previously guided my journey
I needed a dumpster!

My life is my canvas
I choose what colors, what textures, what designs
Only I choose!

I signed up for courses
I engaged my brain
I went from someone I didn’t want to admit knowing
To wanting to be my own best friend
I was enjoying my company
My pity parties stopped
I even started to smile on the inside

The ache in my brain began to subside
I learned of recovery
Others struggling yet healing
No longer on a downswing
Moving up the slippery slope of despair
Gaining ground
Determined to cling to hope
Cultivating hope
Nurturing hope
Celebrating hope

I am healing now
I am becoming whole from the inside out
My accomplishments reassure me I am on the right track
I have left behind the clouds of gloom and doom
I can now shed some light to those who come behind me

(C) 2009 Sara Goodman

Bio stuff:
I am a decade into my recovery journey. Took me almost 5 decades to find my starting gate… I did and now I am at the top of my game and constantly raising the bar… challenging myself to conquer new heights, come to new understandings, master new skills, add the columns up differently. For most of my life, I was a flip flop in a sea of Manolos… a day late/a dollar short… almost pregnant… waiting for my bus at the airport wondering why my ship never came in. Then I discovered RECOVERY! and I finally felt the sun shine on my face… my spirit hydrated, my balloon filled with helium and I took to the skies joyous to be alive. My recovery is my main and constant wellness tool. I am committed to my recovery as if it were a dear lover, Yes, once in a bit, the clouds still gather around my shoulders but I am resilent now… I shake myself off, remember who I’ve become, and propel myself forward… in spite of myself… sheer determination sometimes but I do it… whatever it is at the moment. You, too, can embark on such a journey. Strap yourself in though because at times the ride can get bumpy… it’s for those moments that I glide, free of care, high in the air, that I live for. Ten years ago, you couldn’t light a match near me… I was so drunk, I would have combusted. I can take life’s dings and knocks now and remain unscathed. Today, I have the pleasure, privilege and responsibility of shaping the curriculum for Howie the Harp’s Peer Specialist Training Programs. If I can do it, you can do it! Bye, Leo :)

Alyce Knowlton Jablonski on Recovery. Another look

June 29, 2011

Alyce Knowlton-Jablonski is executive director of the Wisconsin Association of Peer Specialists.  This was a guest post a couple of months ago.  It is one of the best things on the recovery model I have read.

10 Fundamentals of Recovery

By

Alyce M. Knowlton-Jablonski, ACPS, ITE

To clearly define recovery, the Substance Abuse and Mental Health Services Administration within the U.S. Department of Health and Human Services and the Interagency Committee on Disability Research in partnership with six other Federal agencies convened the National Transformation in December 2004, 110 expert panelists participated including people with lived experience and advocates.  One development of this meeting was a document entitled, “10 Fundamentals of Recovery”.

  1. Self-directed: Persons with mental health issues lead, control, exercise choice over, and determine their own path of recovery by optimizing autonomy, independence, and control of resources to achieve a self-determined life.  To access inner knowledge of self takes time and patience, but they can learn or improve abilities, listen to themselves and determine what is best and right for them.
    Providers are using “Motivational Interviewing” which not only determines where a person is in recovery, but helps them to meet that person where they are and help them to discover and access their inner knowledge and determine their own strengths and resiliencies.
  1. Individualized and Person Centered: There are multiple pathways to recovery based on an individual’s unique strengths and resiliencies as well as is/her needs, preferences, experiences (including past trauma), and cultural background in all of its diverse representations.
    Individuals need education, tools and support to believe they are capable of reclaiming their lives.  Educational tools include journaling, medication logs, W.R.A.P.,, Wellness (Ilness) Management and Recovery groups, and other workbooks specific to aspects of living with and managing a mental illness.  Peer support groups are available in many communities.
  1. Empowerment: Empowerment is the belief that one has power and control in their life.  Individuals need education, tools and supports to believe they are capable of reclaiming their lives.  They might require mentoring to learn how to self-advocate for their rights.  Community supports might include W.R.A.P. groups, Wellness (Illness) Management an Recovery groups, NAMI Peer to Peer classes and workbooks specific to aspects of living with and managing a mental illness and the system that provides services to them.  There are also networks and forums set up for people to connect with each other and share experience and strength.
  1. Holistic: Recovery encompasses an individual’s whole life, including mind, body, spirit and community.  This would include the issues of housing, employment, education, mental health and healthcare treatment and services, complementary and naturalistic services, addictions treatment, spirituality, creativity, social networks, community participation, and family supports as determined by the person.  Peer, community and social supports play crucial roles in creating and maintaining meaningful opportunities for people to access services and knowledge.
    Services are now looking at someone as a “whole” person, focusing on all seven domains in a person’s life (e.g.: cultural/ethnic factors, spiritual and religious beliefs, medical issues, housing, financial, etc.)  Persons who struggle with multiple occurring problems (mental health, addictions, developmental and physical disabilities) are now encountering a system that is transforming and willing to look at these issues together, in collaboration, to ensure the fullest healing possible.
  1. Non-linear: The acknowledgement that recovery ebbs and flows, just like life ebbs and flows, is crucial to the acceptance needed to continue on the recovery journey and build resiliency.  People learn to reframe experiences, to look at life differently.  “Failures” become “learning experiences”,  “struggles ” become “challenges”.
  1. Strengths-Based:
    The old medical model focused on overcoming “deficits” or symptoms.  The recovery model now focuses on overcoming “challenges” to recovery. “Treatment” plans are now “Recovery” plans in which strengths are being emphasized.  The Centers for Medicare and Medicaid Health Services (CMHS) has called for a change to Person Centered Recovery plans..  Strengths include: values and tradition, interest, hopes, dreams, aspirations and motivation; resources and assets, both monetary/economics, social and interpersonal; unique individual attributes (physical, psychological, performance capabilities, sense of humor, etc.); circumstances in the community that have worked well in the past and “natural supports” within the community.  Once strengths have been identified, the person and their team can explore where in the “real world” these attributes can be shared, appreciated and reciprocated  and where the person’s contributions and social roles will be valued.
  1. Peer Support: Mutual support, including the sharing of experiential knowledge and skills and social learning, plays an invaluable role in recovery.  People are encouraged and engaged with others in recovery and provide each other with a sense of belonging, supportive relationships, valued roles, empowerment and community.   Peer support groups have been operating under this premise for some 70 years
    Other steps toward peer support have been encouraged and financed in the mental health system.  Peer Run Organizations and Peer Support Specialists are now being integrated into mental health services, paid for through mental health block grant and Medicaid funding.  A Peer Specialist is a trained and certified individual, with lived experience, whose primary responsibility is to help those they serve achieve self-directed recovery, advocating for full integration of those individuals into the communities of their choice.
  1. Respect: Self-acceptance and regaining belief in one’s self are particularly vital.  Respect ensures the inclusion and full participation of people in all aspects of their lives.
    In an atmosphere of respect, there has to be unconditional acceptance of each person, as they are, including acceptance of diversity with relationship to culture, ethnicity, language, religion or spirituality, race, gender, age, disability, sexual orientation and/or “readiness” issues.  This means meeting every person precisely where they are on their journey.
  1. Responsibility: Recovery oriented relationships are based on clearly defined , mutually agreed upon shared expectations and responsibilities of all persons involved.  The concept of “power” is dissolved.  Decisions are made by collaboration of the parties and not by the system and its expectations.  This directly relates to person centered planning.  The Recovery Implementation Task Force of Wisconsin has developed a “Consumer/Provider” contract which spells out the general responsibilities of the parties involved.  It has been implemented in services with very positive results.   Old practices clearly have shown, without a doubt that compliance does not work.  Current evidence based practices clearly show that collaboration does.  In collaboration, a person takes action on behalf of themselves to promote their own recovery.  They take responsibility for their recovery.
  1. Hope: Recovery provides the essential and motivating message of a better future that people and, do, and will, overcome the barriers and obstacles that confront them.  Hope is internalized; but can be fostered by peers, families, friends, providers, and others.  Hope is the catalyst of the recovery process.  Mental health recovery not only benefits individuals with mental health issues by focusing on their abilities to live, work, learn, and fully participate in our society, but also enriches the texture of  American community life.
    Hope is a desire accompanied by confident expectation.  Fostering hope is the foundation for on- going recovery.  Even the smallest belief that things will get better can fuel the recovery process.  Hope is the element that binds our recovery and the 10 fundamentals.    Early in the recovery process, it is possible for a provider, friend and/or  family member to carry the hope for a person.  At some point, however, the person must develop and internalize their individual sense of hope.

Here in Wisconsin, we have integrated these 10 recovery principles into trainings given to consumers, professional staff and community organizations.  Trainings are taught by Peers and Professionals, side by side.  Person Centered Planning is being used in every venue of the public mental health system.  A transformation is taking place here from focus on the medical model to the recovery model.  Medicaid billing now includes psychosocial education and Certified Peer Specialist Services.  16 Consumer Champions train staff statewide on Trauma Informed Care. Evidence based practices are being encouraged and rewarded in the system.  Consumers have been brought to every level of decision making in the process. Consumer Run Organizations organized 12 Recovery Centers that are funded with mental health block grant funds and more are being envisioned by the state.   We, the consumers of Wisconsin are truly a part of this transformation process and our voice IS being heard.

Alyce M. Knowlton-Jablonski is the Executive Director of the Wisconsin Association of Peer Specialists, Inc.  She works part-time as an Advanced Certified Peer Specialist in the Community Comprehensive Services program at North Central Health Care in Wausau, WI.  She is involved in NAMI at the state and local level . She is active in Grassroots Empowerment Project as a Regional Network Leader.  She has been involved in the system transformation in Wisconsin since 1996, beginning with the Governor’s Blue Ribbon Commission and currently serves as on the Wisconsin Recovery Implementation Task Force and Trauma Informed Care Advisory Committee.  Alyce has  presented Recovery and Person Centered Planning as part of a state of Wisconsin training team and has presented at many conferences/summits on mental health recovery, dual recovery, person centered planning, peer specialist services and the stages of mental health/AODA recovery

A poem for Linda

June 29, 2011

Your courage is
each day new
even when skies
are black
and the day heavy
and things are as lead
and weight immovable.
Your love touches and
moves through me
holding me in tight embrace
lifting me into the light
of the day
Telling me that the love
between us
holds true fiber
even in times weary
and sad.
My prayer is that
the coming day
be light
with music dear
and hope again new
to help see you through.

 

The basic problem is we treat mental illness

June 28, 2011

Suppose you have significant problems with depression, have frequently been suicidal, have lost your job, relationships with your family, been in and out of jail, but you also have developed significant issues with addiction to prescription drugs as well as alcohol. The only insurance you have is the Behavioral Health Safety Net. You are afraid of losing your home. Finding food to feed your family is of major concern. Your two kids are beginning to have problems and someone has involved the Department of Children’s Services with your family.

It may sound severe, but this is increasingly an accurate description of the lives of more and more people. And they are lives the mental health system as currently organized is frequently inadequate to help.

The basic problem is that the unit of organization is the disease or problems and the services that are thought to be helpful to that problem. We dont treat people. We treat what is wrong with them. And that has tremendous consequences for those needing help.

The assumption that if you add all a person’s problems together you have the person is simply not true. There is an unspoken competition among services to prove that their problems are more fundamental or real and thus deserving of greater funding. Thus the “disease” of mental illness becomes more important and real than the consequences of living with mental illness. Then when you have “treated” someone with medication or counseling and his life continues to fall apart you are left to question whether or not he is really motivated or resistant to treatment. After enough failures you comfort yourself by telling yourself maybe they really didnt want life to be better after all. “Some people just cant be helped.”

What would have happened to the man I described above?  In the area where I live it would have went something like this:

  1. The prescription drug addiction and alcohol abuse depending on what, how much, and how long he has been using is drastically limiting his ability to function on a daily basis and deal with any other issues.  He will begin to feel at the some point the effects of his body shutting down.  Without any real medical insurance he will be unable to get much timely help for the problems he has.  He will continue to get sicker.  Eventually he will die.  His risks of becoming involved with the legal system will skyrocket.  He will be unable either to get work or keep it.  And based on current statistics his risk of deciding to end it all and commit suicide will also skyrocket.
  2. He will probably require some kind of detox services.  Even if he wants help because of his insurance the only detox programs that will take him have a 3-6 months waiting list.  The problems will only get worse while he waits.  The chances that he will make it to detox will get less and less every day he waits.
  3. If he makes it to detox and then through inpaitient treatment if he needs intensive outpatient  to be successful he will be unable to access that.  He has no way to pay.
  4. He can make an appointment at the local mental health department.  The wait for an initial appointment will be 4-6 in all likelihood.  An appointment with a physician should he need medication will be considerably more than that.
  5. Counseling appointments will be 45 minutes every two weeks.  Without substance abuse issues being addressed the likelihood of success is probably not real good.  If because of the level of chaos and stress in his life he needs more than that he will be out of luck.  If he needs any other services he is out of luck.  Group therapy with others dealing with your issues probably wont exist.  Family therapy will be minimal if it all.  Again no way to pay for all of these things.
  6. When he sees a psychiatrist he will be told he suffers from a mental illness and needs medication to manage that.  He will be told if his brain disorder is managed sufficiently he will not be so depressed.  He will probably wonder how anyone who lives like him cannot be depressed.
  7. Jobs are hard to find.  With strikes against him like a criminal history and mental health diagnosis he will find they are harder.  With the degree of instability in his life he will find it hard to maintain a job.
  8. DCS will be a factor in his house and demand that he show signs of stability in his life or his children may be taken away.  In the end as things get worse they may well be. 
  9. If he loses his place to live there is not much in the way of housing availible.  Public housing is well backed up and normally will not take someone with substance abuse charges against them.  There is little or no housing resources specifically for people with mental illness.

Life is a disaster for him and everyone else who knows him.  All the service providers he comes in contact with may be skilled and committed and doing their level best.  He may, at least at the beginning, really want to change his life.  As he starts to doubt if that is really possible that may change.  He falls through the cracks in a system that for many of the people it serves is defined by those cracks. 

There are no easy answers to any of this.  It is an absolute disgrace that for substance abuse that your insurance may effectively opt you out of the system.  I believe that the beginning might be to organize the system by the people served and not by the “problems” served.  Too often we end up cutting off our noses to spite our face.  Many of the mental health consumers consistently tell me they feel “dissected” and that no one really is concerned with them.  Many tell me the mental health system is as great a stress to them as the mental health issues they deal with.

It has nothing at all to do with the skill, commitment or effort of anyone.  It is the way we have constructed the reality.  Until we realize the most important thing about someone is who they are and not what they “have” I am afraid it will continue to be the reality for too many people.

A poem

June 28, 2011

Principles of trauma informed care

June 28, 2011

Stanton Peele: Are Addiction and Mental Illness Really Brain Diseases?

June 27, 2011

Stanton Peele: Are Addiction and Mental Illness Really Brain Diseases?.

Keep your promises to yourself

June 27, 2011

Our values are our promises to ourself.  They are our statement: “This is what it means to be the kind of person I am.”

Too often we fail to keep our promises.  I know I do.  It is not so much a failure of will or courage as it is one of perspective.  When things get difficult we get involved with the details of the situation: how things feel, where it will leave us, threats ahead, feeling overwhelmed and anxious.  We lose the wider perspective of what things are about. 

We talk about good choices but often that only means what feels better or at least less worse.  Better choices and better living may sometimes not be the same thing.  Feeling better and doing better may not be the same thing.

Most of the people I know who are most involved in recovery are very ethically involved.  They see  the things they do as having personal significance.  How they live is a reflection of who they are or are trying to become.  It is a reflection of a wider meaning and purpose.  Some things are not just about themselves.  They are about honesty, courage, compassion, kindness, commitment, wisdom, openess and learning.  Some things are about the promises we make to ourselves.

At my worst I am about me and only me.  What is so strange is that when I about me the most is when I lose the most I am about.  Today be true to what counts.  Be true to what you are about.  Keep your promises to yourself.

A short course on recovery

June 26, 2011

There are many good and great books about recovery.  They are well worth reading and learning from.  Below is my effort to distill the general wisdom of such books into a few quick points.  I have met many people who are overwhelmed by the amount of information in this books and my hope is that by giving a few quick reference points it might help someone to read further.

  1. First and foremost, you must become an expert on yourself.  One of the laws of life is that if you “can see it coming” you have a chance of doing something about it.  It is those things we “don’t see coming” that are most likely to overwhelm us and shut us down.  This means learning your personal roadmap to not doing well.  You must have your own personal alert system and be ready and able to deal with situations in such a way that prevent you from going further down the road to not doing well.  You must be able to identify two things.  First of all you must know the likely triggers and high risk situations that are likely to start your decline going.  Part of being an expert is learning how to accurately inventory yourself and your life.  The second thing you need to identify are the cues that tell you how you are doing.  On a scale of 1-10 with 10 being a full fledged episode what are you doing, thinking, feeling, or saying that tells you where you are on that scale?  By practicing doing these two things you indeed become an expert and increase your ability to see it coming so that you can actually do something about coping effectively while it is still within your capacity.
  2. Build capacity.  Many things build your capacity to deal well with life.  It includes things like sleep and nutrition.  It also includes good relationships and activities.  It may include medication and counseling.  The combination of life style adjustments and therapeutic factors help to increase your capacity so that when indeed you “see it coming” you have increased your capacity to cope effectively.
  3. Have a plan.  It does not help to “see it coming” if you don’t have a plan of what to do that you are capable of doing and committed to doing.  Coping plans normally come down to one of three options.  When faced with danger you can either avoid it, escape it, or failing the first two options develop a way to cope with it.  When you make your plans try to have backups built in.  Sometimes you can’t avoid or escape danger and you have to cope.  On the other hand sometimes you can.  Plan for all options.  Make sure that your steps are something you can do.  If you need help make sure that you have that in place.
  4. Learn from your mistakes.  View them as an opportunity to learn how to do better. 
  5. Help others.  Self obsession is not a helpful way to live.  Humility is a good trait for recovery.  It does not mean to think less of yourself.  It simply means to think about yourself less often.  In giving we get the things that matter most.  As someone once told me the purpose of life is to live a life of purpose and caring for others is as good a purpose as you are likely to find.

A different courage. 4 tales

June 24, 2011

Mental illness requires courage.  It requires looking at scary, confusing things and keeping on.  It is not so much the courage of facing physical danger although that is certainly part of it.  It is the courage to face others who view you as less than whole or broken, or see you by the light of some stupid stereotype and not let them convince you that you should be ashamed, embarassed or give up.  It is the courage to face a personal history of hurt and trauma and to know that what once was does not define what will next be.  It is the courage to face moods, feelings, thoughts that seem to come from no where and invading and not let them define you.  It is the courage to deal with a brain chemistry that seems torture but yet know it need not be a immutable sentence.  It is the courage to deal with treatments that too often fail to provide what they promise, that may even make it worse and to know that things can go better with you in charge.  It is a different courage.

Dr. Marsha Linehan the creator of DBT who has helped countless thousands of people to a better life disclosed a couple of days ago that she had at one time been diagnosed schizophrenic.  In the process she has shown many people another truth.  Life does not end because of what you are called.  There is life past diagnosis.  She said she “did not want to die a coward.”  I thank her for her courage.

I talked with a lady in the last couple of weeks who has had a psychotic break.  It is not the first and perhaps not the last.  In a lucid moment she broke my heart.  “The hardest part is the fear…not knowing when you will come back… or if.”  No one will every know of her.  She will have no fame.  But she has that courage.  I dont know if I would or not.

I have another friend who is one of the bravest people I know.  Her name is Gianni Kalli and she writes one of the best written and well known mental health blogs “Beyond Meds.”  She is a victim not of mental illness, but of the doctors who tried to tell her she was mentally ill and then tried to “cure” her with an array of medications that left her body in shambles.  If you dont know her story her blog is well worth reading.  Somehow in the middle of slaughter she has maintained her integrity, her ability to care for and be kind to others.  She has a special and rare courage.  She has become an expert not just in dealing with pain but more importantly in how to live well despite the pain and she shares that message as well as anyone I know.  I admire her greatly.

And finally my wife Linda.  She shows me each day what courage is and how to live it.    She is cursed with a brain chemistry that attacks at a moments notice.  Seizures defined much of her early life.  The brain surgery she had to address the seizures left her with many other issues.  She has dealt with more things than can be counted, has been hurt more times than I care to remember.  Seizures kill 50,000 people a year I found out today.  She has been close.  Somehow she has found the courage to remain the most loving person I have ever met.  Every day my awe is renewed.

It is a different courage.  If you have had to deal with mental health issues you know about  it. 

I sometimes wonder if encouragement is a ruined word.  It is so much more than cheering people up.  I think it is about helping people to find they too have that different courage.

On Diagnosis:The Hopeworks Community Message

June 24, 2011

Look on the sidebar of this site.  You will something called the Hopeworks Community Message.  It is a reprint of a previous post called “Diagnosis.”  It is now a permanent part of this site because we think it talks about some fundamental truths and conveys some of the basic ideas that we want Hopeworks Community to share with you.

On diagnosis

You are not the things

You are called

No matter how frequently

you are called them,

Or who calls 

Or why they call.

You are not the things

you are like

regardless of how much

you are like them.

You are not

the things that measure you,

that place you

or limit you.

You are not

what you have,

how you look,

or how you feel.

You may be many things,

But no thing is all you are.

You are a gift

in a world needing gifts,

an opportunity,

a miracle,

in a world that often believes in neither.

You can care and be cared for,

Touch and be touched,

Laugh and cry,

Live and live for.

You can be alone  or be with,

be brave or be scared.

Nothing is closed,

but nothing is free.

Close not your eyes

And reach to be all you can be.


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