Part V – Why does all this recovery happen?

gail louise Beyond Recovery to Healing, Learning to Hope , , , ,

One doesn’t recover from a mental illness in the same way one recovers from a broken arm. Yet recovery and healing is possible, and life can be enriched. We refer to that healing as a personal recovery.

Reading more of Professor Mike Slade’s work on personal recovery I found that my journey rediscovered something essential for the recovery to succeed: a sense of personal agency. This is the belief and assurance that one has the power to positively impact one’s own life; the power to act in one’s best interest. He writes that developing a sense of agency can be a difficult process precisely because mental illness often takes away that assurance and belief. He urges professionals, staff and family to show support which recognizes the importance of renewing the individual’s sense of self agency.

Finding and supporting that sense of agency – the ability to act in your own best interest – in yourself and for those you love is a crucial part of personal recovery.

I developed a great deal of authority over my life when I successfully quit smoking, a task I once thought was impossible for me. You see, when I quit I’d found I could make a difference in my health care, a truly enormous difference; perhaps a life-saving one. And I learned people would support me in this difficult but worthwhile goal!

Now I hopefully approached a new goal, to learn tools and techniques to help counter the persistent negative thoughts common to major depression. The experience of power over my life I’d had when I successfully quit smoking taught me to seek new tools which I could use to achieve new goals: It was time to learn Cognitive Behavior Therapy, and I had no problem learning and practicing its techniques. I continue to be an agent in my own life: Here in my 67th year I set out to find a Personal Trainer so the physical work-outs I desired would be effective and fun. I found one through a good friend; hired her, and have lost weight and body fat while building muscle, etc. I think more clearly and can concentrate more fully since I have been on a regular exercise schedule.

The symptoms of depression and bipolar II persist but weaken; the sense of authority over my own life increases; I’m healing.

Part IV – The Tasks of Personal Recovery

gail louise Beyond Recovery to Healing, Learning to Hope , , , ,

Touching my own experience, I saw in it each of the four recovery tasks listed in the previous post.

Recovery task 1: “The first task of recovery is developing a positive identity outside of being a person with a mental illness.” The person identifies elements that are vitally important to him or her, which will differ in significance from what another person identifies. “…only the individual can decide what constitutes a personally valued identity for them. “

I was lucky. In the midst of serious depression, I was married, a mother, and pregnant with our second child. . I did not lose those identities completely, but they were shaky. The years passed and I started my recovery journey: about 10 years later, the roles of wife and partner, mother to a child and mother to a teenager crystallized and doubt had been replaced often with enjoyment and wonder.

Recovery task 2: “The second recovery task involves developing a personally satisfactory meaning to frame the experience which professionals would understand as mental illness. This involves making sense of the experience, putting it in a box, and framing it as part of the person, but not as the whole person.”

The frame in which I understand my mental illness experience keeps evolving as the mental illness does not cease. But as the illness fades and my recovery grows, the frame gets more refined with the passing years.

I realize that again, I was lucky. I was married to Jim and he knew mental illness to be a no-fault biopsychosocial medical illness. So did I: I had inherited the tendency to depression, but was able to frame this as bad luck, not personal or family fault. Also, I lived near Madison, WI which had good services and I could afford good medical care. Again, I was fortunate.

I also had training in a health care field. I was a registered dietitian, (and still am) and proud that I was on the academic staff at the University of Wisconsin-Madison for 16 years (as a clinical instructor in the Department of Nutritional Sciences). So I was comfortable in various in and out-patient settings. I also knew appropriate levels of anatomy and physiology – and even biochemistry-lite. So I could follow the medical model of mental illness.

So I framed my experience of mental illness as an illness and as time went by, I was more and more able to put the illness in a box and frame it as only part of me but Not ME.

Recovery task 3: “Self-managing the mental illness.” Mental illness becomes ONE of life’s challenges. As people develop personal responsibility, self- management skills develop. This doesn’t mean managing the mental illness completely on one’s own but rather, knowing when to seek help and support.

I was desperate to “get better”. I cooperated in every way I could, even in the long decade of my body failing to respond to any of many anti-depressants. I never skipped a medication or an appointment. I ate well and got enough exercise at that time of my life.

As I began to recover in the 1990’s I took an even more active role in managing my illness. I learned cognitive behavior therapy (CBT) and carried out the exercises on paper, as assigned and in session with a psychology doctoral student. It helped me greatly, the CBT, so that I keep it up today as needed. Nothing has been as effective as CBT for minimizing negative thinking.

Now I’ve taken further steps to guard my health. In January of 2014 I hired a personal trainer(!), adding hour-long work-outs six days every week, three of them with my trainer.

Recovery task 4: “Developing valued social roles.” The key word here is valued. Valued by the individual with mental illness and by the greater social circle/setting/society. The person undergoing recovery, in this last task, must find a niche for himself or herself in their community. It could be a position/role modified from previous times or a new experience altogether . The role may or may not have anything to do with mental illness.

A huge change in my life occurred when I began to volunteer in a big way in the mental health organization NAMI, at the local and state level. You can read about my development in the About Me section of this website.

With this change I gained a tremendous amount of confidence and poise. I also had conviction in the value of what I was doing (teaching and, later, directing the Family to Family Education Program for NAMI WI). I felt education to be a liberating factor in living with mental illness in myself and in the family. I was fortunate in that the work fit me like a glove; teaching small groups of college age adults in the application of didactic material to the clinical setting gave me experience for teaching small groups of adults. My history as an adult child of someone with a mental illness and my own history of depression and after 2002, bipolar II illness, helped me understand families and persons with mental illness and all the dilemmas and controversies that entails.

So I definitely found a position in the community where I was valued and I felt valued.  I carried out my responsibilities with confidence and skill and compassion. I blossomed. I had developed something essential for self-management: a sense of personal agency .… I was the author of my own work.

Part III – The Journey and Tasks of Recovery

gail louise Beyond Recovery to Healing, Learning to Hope , , , ,

Dear readers: To talk together about recovery for those struggling with mental illness we need a definition of recovery that does justice to the magnitude of the journey. Here is one such definition –

“…..a deeply personal, unique process of changing one’s attitudes, values, feelings, goals, skills, and / or roles. It is a way of living a satisfying, hopeful, and contributing life even within the limitations caused by illness. Recovery involves the development of new meaning and purpose in one’s life as one grows beyond the catastrophic effects of mental illness.”

Recovery from Mental Illness: The Guiding Vision of the Mental Health Service System in the 1990s. William A. Anthony, Ph.D Psychosocial Rehabilitation Journal, 1993, 16(4), 11–23.

I encourage you to read the entire article from which the definition above was taken. What the article has to say about recovery was ground-breaking when first published in 1993. It is a fine resource as well today.

If the definition above is the vision, we need guide to follow it: 100 Ways to support recovery. A guide for mental health professionals, Second Edition, 2012.

The guide’s author is Mike Slade – Professor Mike Slade – Clinical Psychologist and Professor of Health Services Research at the Institute of Psychiatry, Kings College, London. I found plenty of material in the report helpful to anyone wanting to learn about recovery and eager to help a family member or friend.

Professor Slade clarifies that recovery is a word with two meanings. Clinical recovery “is an idea that has emerged from the expertise of mental health professionals, and involves getting rid of symptoms, restoring social functioning, and in other ways ‘getting back to normal’”. “[Personal recovery] … is an idea that has emerged from the expertise of people with the lived experience of mental illness and means something different to clinical recovery.”

Most mental health services, Mike Slade acknowledges, are currently organized around meeting the goal of clinical recovery. Yet most mental health policy around the world increasingly emphasizes support for personal recovery. His guide aims to support the transition to ongoing personal recovery, framing the process by identifying common tasks undertaken by persons in recovery:

Recovery task 1: “The first task of recovery is developing a positive identity outside of being a person with a mental illness.”
Recovery task 2: “The second recovery task involves developing a personally satisfactory meaning to frame the experience which professionals would understand as mental illness.”
Recovery task 3: “Self-managing the mental illness.” Mental illness becomes ONE of life’s challenges.
Recovery task 4: “Developing valued social roles.” Roles valued by the individual with mental illness and by the greater social circle/setting/society.

I was able to see each of those four tasks in the flow of my own recovery ……………….

Part II – Hard; oftentimes Lonely Work

gail louise Beyond Recovery to Healing, Learning to Hope , , , ,

Here is a favorite explanation of mine about recovery:

“Recovery is a process, a way of life, an attitude, and a way of approaching the day’s challenges. It is not a perfectly linear process. At times our course is erratic and we falter, slide back, regroup and start again……The need is to meet the challenge of the disability and to re-establish a new and valued sense of integrity and purpose within and beyond the limits of the disability; the aspiration is to live, work, love in a community in which one makes a significant contribution.” –Pat Deegan, PhD, quoted in Recovery Now “What is Recovery “

I first read Pat back in 1993 and I cried because she understood the ill person’s experience as it is, burdened by symptoms and then the relief, when well again.  No one has ever expressed this empathy since with more insight and delicacy for me:

Courage and fear was my main diet as I began my recovery journey . Always fear. Fear when I went to my first psycho-education meeting sponsored by UW Hospitals in early 1990’s. I didn’t know how I would be received, who the other people would be in the class —would I be able to talk to them and what would I say?  Courage too, but it always took second place. It is definitely easier to stay home than expose oneself to the risks of rejection and dreadful anxiety that accompanied me whenever I went forward.

Fear when I quit smoking.  Afraid the anxiety of not having cigarettes would cause me to lose my temper around people I loved and lose control of myself.

Fear when I tried out for University of Wisconsin –Madison Choral Union. It was something I wanted so badly to do: To sing within a large group of men and women forming an impressive choir. I had wanted to be part of this since I’d been a college student.  And now in my 40’s I had my voice back (A polyp was removed from my vocal cord and I’d quit smoking)!  Deeply anxious, I simply couldn’t allow myself to speak spontaneously to the Choral Director and I couldn’t think of what to say……..so I went to the audition reading my information and questions from an index card.  Nice; I was selected to be part of the alto section!

For the mentally ill, struggling with symptoms that strike to the heart of whom they think they are or could be, Recovery is hard, lonely, lonely work. And so important. I’ve been reading anew a number of documents and articles on recovery and have found some helpful resources to pass on to you.

Part I – On Recovery

gail louise Beyond Recovery to Healing, Learning to Hope , , , ,

Another season has come to pass in south central Wisconsin. Summer is here; indeed today is July 4th. I feel blessed as I reflect upon the year that has passed. I have good health and I am very thankful.  Oh I work at it, daily, maintaining good mental and physical health. But we know that striving for good health and working towards it, even faithfully, doesn’t promise we will be healthy.

I’m especially thinking of mental health recovery. I am in recovery and have found, to my deep satisfaction, that healing has come to me.  Recovery is complex to talk about. What does it mean, as applied to people with mental illness and psychiatric disorders and why is their recovery is SO important?

Here is a working definition of recovery:  A process of change through which individuals improve their health and wellness, live a self-directed life, and strive to reach their full potential.

Further, it is something worked towards and experienced by the person with the mental illness.  Mental health professionals and family cannot “do” recovery to the person. The essential contribution of professionals and family is to support the person in their journey of recovery.  As the recovery journey is individual so the best way to support it will vary person by person.

In reality the support that is needed goes beyond individual providers, friends and family. It extends to accessible community services also.

Note that there is nothing mentioned here about a medical recovery or cure for mental illness. But it is real, and this recovery is a new sense of self and of purpose. As health and wellness is regained, people once again take pride in themselves and ….get a life! But gaining recovery is hard work!

Stay with me; I will be returning to the topic of Recovery within Mental Illness often during the next posts.

Three Key Messages

gail louise On Suicide ,

Suicide is the tenth leading cause of death in our country. Unlike many of the leading causes of death, the suicide rate has shown no appreciable decline over the last 50 years. [see the footnote at the end of this post]That this should be so, losing so many people to this mental illness outcome, is a tragedy. It is also a tragedy we can do something about.

Over 41,000 people in America died by suicide in 2013….

Recently reforms have been recommended in suicide planning and care. The new recommendations, which I will comment on in this post, are found in three documents.

  • The Way Forward (2014 pdf).  Released by the Suicide Attempt Survivor Task Force of the National Alliance for Suicide Prevention.
  • Suicide Care in Systems Framework (2012 pdf).  Report by the Clinical Care and Intervention Task Force of the National Alliance for Suicide Prevention.
  • Continuity of care for suicide prevention and research (2011 pdf).  A report commissioned by the Suicide Prevention Resource Center.

Download links to each of these reports, and much else, can be found here on my website.

What am I asking us to do?  TO INFORM OURSELVES about the reforms these reports recommend in suicide prevention planning and care! TO BRING THE NEW RECOMMENDATIONS to our local institutions, mental health organizations, doctors, therapists as well as to our families and to our loved ones with a mental illness!

In my opinion, these three are the most significant and far reaching of the recommendations:

 1.    Add suicide loss survivors and suicide attempters to the committees or task forces appointed to develop prevention efforts. Representation is an essential and important first step in suicide prevention (The Way Forward, 2014).  We can learn from suicide loss survivors and attempt survivors both what was and what wasn’t helpful and, importantly, what was missing in preventing suicide – and solicit their suggestions for improvement.

2.    Here is the second essential change: As with people who experience a stroke or heart attack, all persons in suicidal crisis should have immediate access to care – effective treatment and support services must be available to persons in crisis, how and when they need them (Suicide Care in Systems Framework, 2012). This report details a successful example of a large organization providing immediate access to care: The Henry Ford Health System restructured its behavioral health care system with the goal of Perfect Depression Care, and now offers same-day-drop-in-care for persons in crisis.

3.    Especially, we need an infrastructure for continuity of care.The third document, (Continuity of Care for Suicide Prevention and Research, 2011) focuses on the care provided after discharge from emergency and in-patient stays, noting: “As many as 70 % of suicide attempter of all ages will never make it to their first out-patient appointment. The report continues: “[Although] patient attributes such as having few skills, minimal resources, socioeconomic distress make it hard to engage them in out-patient treatment … organizational attributes can be altered.”   “Continuity of care and coordination of care require the support of cohesive health services infrastructures rather than numerous disconnected facilities and care provision arrangements.”

Organized, accountable, actionable continuity of care is essential.

The Task Force responsible for our second report (Suicide Care in Systems Framework, 2012) believes that making suicide a never event must be the nation’s vision. “Public and behavioral health organizations save countless lives every day. By creating an organizational culture where suicide attempts and deaths are unacceptable events, and managing a care environment around that cultural shift, even more lives can be saved.”

A powerful statement.  Won’t you, along with me, be participants in advocating these reforms and that vision?

 

Re “…the tenth leading cause of death” see Targeting Suicide by Thomas Insel, M.D., Director of the National Institutes of Mental Health, April 2, 2015.  “Indeed,” Dr Insel notes, “the rate among middle-aged Americans is increasing, and for young people ages 15-34, it is not the tenth, but the second leading cause of death.”

In contrast with suicide, whose rates have not declined, mortality from other medical causes such as stroke, AIDS, heart disease, has declined significantly.  Clearly our suicide prevention efforts have not been effective enough nor engaged enough people to change this rate.

Suicide: It’s not inevitable

gail louise Communities Preventing Suicide, On Suicide , ,

Could we say ….
that even one death resulting from a suicide is acceptable in mental illness? Clearly, we wouldn’t want that one person to be OUR relative, neighbor, friend, right?  That one person can’t be anyone’s relative, neighbor or friend. So zero deaths by suicide should be our goal.

Are you a clinician dissatisfied with the suicide prevention approach used at your center? Or perhaps are you a survivor concerned that suicidal feeling will recur and you question who or what is going to truly help you??? Or maybe you’re someone whose relative attempted suicide last year and was found in time, and you’re hunting for a more proactive and effective suicide prevention program but unsure where to turn?

I have an approach that I’d like you to consider for your clients, or for yourself or for your loved ones: I recommend the Zero Suicide (www.zerosuicide.com) program.  Zero Suicide, an approach and program developed for the health care system, views suicide deaths as a preventable outcome and insists that the goal of zero suicides among persons receiving care is a goal that system can and should accept!

Zero Suicide, a project of the Suicide Prevention Resource Center (SPRC), grew from work done by the National Action Alliance on Suicide Prevention (NAASP). It is a specific set of tools and strategies. It is a concept, a practice, and a goal.

NAASP views suicide as preventable and the goal of zero suicides as a goal we should all aspire to accomplish. The word ALL is significant. This initiative requires the engagement of suicide attempt survivors, family members, policymakers, and researchers, and the clinic or hospital. The effort seen by the NAASP and Zero Suicide is a community endeavor—an effort including but beyond health care providers and clinicians.  Beyond heroic efforts of individual practitioners.

Where did this Zero Suicide program come from? The approach builds on work done in several health care organizations, including the Henry Ford Health System (HFHS) in Michigan.  The Henry Ford Health System had already applied a rigorous quality improvement process to problems such as inpatient falls and medication errors. They also realized that mental and behavioral health care could be similarly improved … an individual involved with the quality improvement group challenged the team:  “Why don’t we adopt zero suicide as our improvement goal?” As a result HFHS developed the Perfect Depression Care model, a comprehensive approach that included suicide prevention as an explicit goal. Both best and promising practices in quality improvement and evidence-based care are applied in their model and they have had wonderful, life-affirming results—-an 80% reduction in the suicide rate among health plan members.

NAASP’s Clinical Care and Intervention Task Force then identified essential elements of suicide prevention for health care systems having a defined population of individuals with mental illness. The Zero Suicide approach is created around these essential elements.

Here’s what I like about their approach:

Zero Suicide asks for a change in culture with firm leadership buy-in. The workforce – this includes both clinical and non-clinical staff – is to be trained using the Zero Suicide Toolkit.  The cultural milieu is to foster a caring, non-judgmental workforce.  Considerate and compassionate caring has sometimes been absent when the person being cared for has attempted or considered suicide (c.f. The Way Forward report).  Suicide risk among people receiving care is identified and assessed systematically. Every person has a suicide care management plan, or pathway to care, that is timely and adequate to meet their needs.  Finally, I’m very encouraged that this planning includes collaborative safety planning and restriction of lethal means.

It is also vital that treatment address the person’s suicidality. The patient’s own suicide planning needs to be discussed in detail and taken apart and turned into a scenario where the person is once again safe. Contact and support for the suicidal person, especially when in transition between emergency room and home or inpatient care and home, must be continuous. Many suicides occur after discharge from the hospital or emergency room (c.f. The Way Forward and Continuity of Care for Suicide Prevention reports).  Deaths that occur after discharge aren’t inevitable; they can be tackled by better transition and discharge planning with greater attention to detail.

Fellow advocates, we can do better.  Zero Suicide’s program can help.

No fault; no blame

gail louise Chronic/SeriousMental_Illness , ,

It’s a fine Spring afternoon; I’m sitting at my desk writing, and a memory of my early encounter with a profound message rises: Somehow, somewhere, back in 1992, I believe – I found my first NAMI Dane County newsletter. That’s not important. What is important was the written message it contained.

I believe it was the newsletter’s “From the President’s Desk” column that encouraged me to learn more about NAMI (the National Alliance on Mental Illness). The column reflected an understanding of biologically based mental illness that I had not found before, and an understanding, not only of my illness experience, but more importantly for me an understanding of my father’s illness and my family’s response to that illness. It was a strong “no fault, no blame” grasp of the fundamentals of daily life with a serious disorder.

It was clear to me that the column’s author and others in NAMI knew and believed without question the conclusion that I had just encountered: The only way to view mental illnesses and brain disorders is without applying blame or fault.  Not to families.  Not to individuals.

Eight Core Values

gail louise Beyond Recovery to Healing, Communities Preventing Suicide, On Suicide

Writing again about new thinking emerging on suicide prevention – The Way Forward: Pathways to Hope, Recovery, and Wellness with Insights from the Lived Experience, 2014 .

There are eight core values The Way Forward’s Task Force agreed should be behind all activities designed to help attempt survivors, or anyone who has been suicidal:

  • Foster hope; help people find meaning and purpose in life
  • Preserve dignity; counter stigma, shame, and discrimination
  • Connect people to peer supports
  • Promote community connectedness
  • Engage and support family and friends
  • Respect and support cultural, ethnic, and/or spiritual beliefs and traditions
  • Promote choice and collaboration in care
  • Provide timely access to care and support

I deeply agree with these core values.

Fostering hope is the very first item. It must be so: Help finding hope can be a comfort, for even small hopes are so valuable. Let’s embrace interactions with the suicidal person that boasts their dignity, for chances are they have only a fragile self-respect — but all of us cling to our dignity. Connecting to peer support can be helpful; working with someone who has been there, knows what is what, someone who can be empathetic and a role model to boot. This is both wise and practical. Connecting to the community brings belonging, meaning and purpose from the community into the self. Thus respect and support for cultural, ethnic and/or spiritual beliefs is a fundamental good within human interaction. Promote choice and collaboration! Don’t we all need to have a say in our care, no matter the circumstance? Choice and collaboration gives us some respect and some feeling of effectiveness in our own care. Timely access to care. Indeed, when people have strokes or symptoms of heart attack, they expect fast, efficient life-saving care. The systems to provide that care exist in every little hamlet and metropolis. Surely we can create a system that continues care through and after a suicidal crisis, care that is intensive, smooth, protective and effective.

 

“For many years, suicide prevention has not engaged the perspectives of those who have lived through suicidal experiences,” declares The Way Forward.

Let me finish with a word about the two leaders behind this initiative.  They are, respectively, a survivor of suicide attempts and mental health advocate and, the other, a psychologist with years of experience working with people in suicidal crisis:  Eduardo Vega, MA, Executive Director, Mental Health Association of San Francisco and John Draper, PhD, Project Director, National Suicide Prevention Lifeline.

It is the hope of the Task Force and it’s co-leaders that The Way Forward will help bridge conversation about suicide prevention between mental health policy makers and consumer advocates. As a stimulating and thoughtful resource, it “…may enable these two powerful forces for change to come together and develop new, more effective approaches to reducing suicide attempts and deaths”.

Communities in Action to Prevent Suicide, part IV

gail louise Communities Preventing Suicide, Learning to Hope, On Support, Shame , , , ,

Dr. Whiteside, concluding her keynote address to the Communities in Action to Prevent Suicide conference, April 2015, asked us to visit the websites below for a look at what suicide attempt survivors have to say for themselves.  Their words offer important insights.

www.livethroughthis.org is a wonderful and compelling collection of portraits each linked to a suicide attempt survivor story, as told by those survivors. LiveThroughThis shows through these remarkable stories that everyone is susceptible to depression and suicidal thoughts. It does this simply by showing portraits and stories of attempt survivors — profoundly sharing that they are people no different than you or I.

As the website’s author Dese’Rae L. Stage writes, “…these feelings could affect your mom, your partner, or your brother, and the fear of talking about it can be a killer.”

The second website attemptsurvivors.com  is a now-completed project of the American Association of Suicidology. This site also features attempt survivors who have spoken up and told their stories. This website’s editor taught me a valuable lesson also. She wrote that people continually ask survivors about suicidal thoughts and actions, saying “Why would you want to do that to yourself?” As she noted, this question represents a shocking and a fundamental misunderstanding. You see, as when inquiring about any potentially fatal health issue the question needs only be, “Why is this happening to people we love?”

Do you see the stark difference between these two questions? The first, intentionally or not, is accusatory and focuses on blaming the suicidal person. The second question reflects concern for the person and asks why it is that this has happened to this individual, without seeing the act as a personal fault — and in truth, suicide is usually the result of a mental illness process.

Thank you for reading and for hearing and listening to them.