Heart of Darkness

When I recently wrote my extended family to tell them I was too fatigued to celebrate our 50th Wedding Anniversary, many assumed I was fatigued because cancer had returned.

This is not so.

The fatigue is from almost overwhelming depression and anxiety.

The surgery and radiation treatment I had for cancer in 2018 was easier to bear. Recovery was smooth and linear. Support from family was heart-warming and helpful.  The pain was manageable.

My struggles with a recurrent major depression have been ongoing now for six months, with no improvement. (I am under the care of a good psychiatrist and recently started another new antidepressant.) The symptoms are more severe than I have experienced in thirty years.

Anxiety compounds the picture as it amplifies all my senses. My skin is super-sensitive to touch, sounds are all noisy (even running water from a faucet), reflections from mirrors and windows are distracting, and little pains convert to bigger pain.

What helps? We are attempting to solve the puzzle.

Quietness, completing little tasks, coloring, and listening to Jim reading to me (a 50 year tradition!), and sometimes reading on my own.

A quiet companion holding my hand is very soothing. Conversation and questions are agonizing.

Hope springs eternal? By God, let it be true.

The Subtleties of an Illness: Depression

This past month and a half has been pretty darn difficult for me. Depression descended and stole all the beauty of the lovely fall season.  It terrorized me and made me feel helpless and without hope. I was close to losing my compass in life.

Depression does this by altering my thoughts, behaviors and feelings. It is powerful, life altering; so  sadly and tragically that it can kill by suicide. During depression my feelings are mistaken and flawed. Instead of knowing that I am capable of meeting life’s daily challenges, I feel overwhelmed by them. Getting dressed, for example, is an achievement. What? Why? With depression all little decisions are magnified and threatening. Choosing what to wear on a ordinary day is fueled by anxiety that whatever I choose, I will choose wrong. The negative thoughts that occur with depression are very real. Frequently, those  negative thoughts whisper that all is wrong with my life and my family’s life.  The thoughts and feelings attack my fundamental beliefs and values.

With beliefs and values shaken, depression is left to achieve a stranglehold on my mind.

Sadness pervades.

And I feel especially saddened for those who lived with depression before effective medications were realized and discovered. It was harder to live with depression back in the decades of the 50’s, 60’s and 70’s.  People with depression, or those who had had a nervous breakdown, were thought of as weak, or lazy or both. Lacking in character. Deficient.

Today we have become more open-minded. We know depression is an illness. Before long scientists will uncover exactly what gets tangled in the suffers brain. And luckily, we’ve found new medications that can be life saving.

My new medication will become active in about 3 weeks. Please understand that 3 weeks to me sounds like an eternity.

Understanding families and friends do ease the experience of depression, but In the meantime, I will endure and live through a bit of hell.

Lies your depression tells you when you are suicidal

He was middle aged and in the prime of life when he killed himself. He had family and children. A prestigious appointment at a respected University – and he had received several awards for his research. Wholesome looking and in good shape, he seemed to have had everything to live for. Do you know what? That’s right; he did have many things to live for, including a promising future.

Yet he went out of town for the weekend, quietly rented a motel room and died there by his own hand.

We all ask why. It seemed like the man had the world by a string. Why does anyone commit suicide?

It doesn’t make sense, does it? No it doesn’t and yet people take their lives every day. WHY?

Nearly always there is an intractable depression pushing the person into despair. Depression lies, and its false thoughts and lies are utterly convincing. Yet to the depressed person these thoughts feel completely real and desperately true. In my experience they are intense, persistent, and severely painful.  The person becomes overwhelmed by their depression’s lies.

I’d like to share insights from Amanda Redhead, Mother, Nurse, Writer, and Warrior from her Huffington Post blog entry of Sept 9, 2016:  Five Lies Your Depression Tells You When You Are Suicidal.

Here are five lies that depression imbeds in the head of a sufferer:

  • YOUR LIFE IS ALREADY OVER. YOU HAVE SCREWED UP BEYOND REPAIR!
  • YOUR LOVED ONES ARE BETTER OFF WITHOUT YOU.
  • THE PAIN WILL NEVER END, NEVER END.
  • YOU ARE NOT WORTHY OF LOVE OR LIFE.
  • … THEREFORE, YOU MUST KEEP YOUR THOUGHTS ABOUT HARMING
    YOURSELF QUIET!

One: Your life is already over. You have screwed up beyond repair.

Wonderfully, there is no such thing as a life ‘beyond repair.’  Amanda writes “You may have messed up so royally that you believe that no one will ever forgive you. But there is life beyond this pain and there is life beyond whatever mistakes you have made.”

Two: Your loved ones are better off without you.

This empty lie is probably the biggest of them all.  Far from removing their pain, suicide only creates an emptiness in your loved one’s hearts. That hole remains. Your loved ones find only sadness and the pain of losing you. “You may be feeling like a failure right now but I cannot imagine a greater mistake than having your last act on earth be one that causes intense pain for each and every person you love.”

Three: The pain will never end.

It feels like a pain that will never end.  I remember looking for just a brief reprieve.  Silently I bargained for relief in minute increments. The pain of depression felt very catastrophic and chaotic to me. I couldn’t believe that the rest of the world would or could go on functioning with my pain in it.  A moment in this pain feels like a year.

But there IS an end to the pain, unlikely as it seems now. As Amanda said, “I cannot tell you when that end will happen, but I can tell you that the end is somewhere.” You may have to work for it, your may have to get help or take medication or reach out when you want to stay silent, but the end of the pain is out there on the  horizon.

Four: You are not worthy of life or love.

Another big lie. This lie and others like it are invasive and seem so accurate. Everyone is worthy of love, no matter the mistakes they have committed. Everyone is worth living! You are only seeing the negative things about yourself right now. Remember depression colors your thoughts. You are a valuable human being and deserve to be alive and loved.

Five:   …You must keep your thoughts about harming yourself quiet.

#5 is the ultimate lie: Yes, your depression wants you to stay silent. Depression wants you to take your life. There is great shame around depression, anxiety and suicidality.  When we talk about the depression, we erase some of that shame and stigma.

Please believe me: There is no need to suffer in silence.

Pick up the phone and call one person and tell them what you’re struggling with. This may be the hardest thing you will ever do, but it gives life – your life – another chance.

Here I must add a word of hope:

Yes, depression distorts the depressed person’s thoughts. And depression’s thoughts can be deadly.  The five lies illustrate various cognitive distortions.  And forms of cognitive therapy can assist depression suffers to learn to recognize and combat false and irrational thought patterns – depression’s lies. Today recognizing and analyzing distorted thoughts that feed depression is called cognitive behavior therapy (CBT). There is a promise of hope for recovery.

Psychiatrist Dr Aaron T. Beck laid the groundwork for the study of these distortions. His student, David D Burns, MD, continued research on the topic. Dr Burns’ book, Feeling Good: The New Mood Therapy, was first given to me in the mid-eighties by my psychiatrist. I glanced at it and rejected it, thinking that my doctor was telling me I should learn ‘positive thinking.’ I knew depression was a disease more serious than superficially thinking right. But in the 1990’s I was able to accept the book and its premises. Soon I underwent a group therapy session during which some of the basics of CBT were taught. I was able to learn those basic principles and asked for a therapist to do CBT regularly with me.  The short of the story is that I did find a therapist, who had a PhD in psychology and had done significant graduate work specifically with CBT. He was willing to take me on weekly for several months.  Cognitive Behavioral Therapy became one of the essential pillars undergirding my recovery from suicidal depression.

Depression now sometimes gets a grip on me. But with medication that works for me, with the practice of cognitive behavioral therapy, with a supportive family, and with a doctor’s ongoing psychiatric care I no longer develop full-blown depressions. Depression occasionally gets a start, but CBT’s corrective is powerful, and negative thinking doesn’t get a hold on me for long.

Thanks for reading,
Gail Louise

The Strengths Model: Meaningful Relationships and Reciprocity

Reciprocity – and the mutuality it implies – is always present in a meaningful relationship……. Each participant sees themselves bringing something of value to the relationship.

Yes, to a relationship between a person with a mental illness and a mentor/other in a helping role. Listen to this wisdom gleaned from The Strengths Model: A Recovery-Oriented Approach to Mental Health Services by by Charles Rapp and Richard Goscha; their chapter entitled “Engagement and Relationship:”

View the relationship as an experience in Mutual Learning. Put the recipient, or the person with the mental illness, in the role as teacher. The mutual learning approach doesn’t only want to know a person’s diagnosis, for example, they want to know about a highly individualized set of experiences. The person being helped, when viewed as a teacher, enters an empowering role. As teacher he/she is engaged in meaning-making and self-understanding. The helper, by listening and learning, seeks to enter the reality of the person by knowing the objective conditions of their lives and their subjective experience of that reality.

Yet the reciprocity inherent in Mutual Learning is easily missed: When the friend/caregiver/mentor/professional is always the giver and the person with the mental illness is always the recipient, the idea is perpetuated that the helper always has what is most valuable. Most helpful relationships have a balance based on mutuality and reciprocity. Refusing offers of reciprocity — whether it is an offer of a cup of coffee, a small gift, or knitting lessons — may be as rejecting as outright stating to the person “You have nothing of value to offer this relationship.” And, as our authors  observe, such condescending behavior “….is downright unfriendly.”

It is interesting to note that actions refusing reciprocity can stay with one for a long time. Here are two examples: Both helpers were excellent psychiatrists and good doctors for me. Both provided me with therapy as well as assessment and medication management.

The first helper happened to retire just as I was beginning to experience recovery. This psychiatrist had been through moderate to severe depressions with me, many drug trials, hospitalizations, and had “seen” my children grow up. He was very helpful to me and I admired and trusted him. Today I think of him fondly and with respect. He got me on the right road to treatment and a progressive, wholesome doctor-patient relationship.

The problem in short is that he didn’t accept a small gift from me of two tickets to a University of Wisconsin Choral Union concert. I was performing in the Choral Union and this doctor had been a backer of my quitting smoking and learning to use my voice, once again, to sing. It was a milestone for me to sing in the University’s acclaimed choir under the well-known and highly regarded Choral Director Robert Fountain. My doctor thanked me for the tickets but mailed them back to me with an apologetic note. Even though our professional relationship had ended, he felt accepting these tickets in any form would violate the professional-patient code of conduct.

I understood, but I cried.

Recently another psychiatrist retired. I had been with this person a long while as well. Through my blossoming periods of experimenting with recovery and hard times as well. Through my periods of NAMI activism and Family to Family service role. Through the empty nest syndrome. There was also a period when Jim became clinically depressed, followed by a period of great doubt and casting about from which, with Mutual Learning, Reciprocity, and Respect, we have since grown and recovered.

This psychiatrist accepted my gifts, which were two. At our last appointment, I bought a picnic lunch, complete with tablecloth and picnic basket filled with delicious finger food. We enjoyed the food and each other’s company. We talked about her future and my own.

I also gave her a book, One Hundred Names for Love, a true story of genuine love in which the author, Diane Ackerman, recounts the challenges and victories she and her husband lived through following his stroke.

The book was appreciated and accepted as a gift. The lunch was relished.

I will always remember that last appointment. It was delightful, reciprocal in nature … and empowering.

The Strengths Model’s Focus on Meaningful Relationships

In my last post, I wrote about the Strengths Model – a progressive attitude about mental health thinking, care and services put forward by Charles Rapp and Richard Goscha in their book The Strengths Model: A Recovery-Oriented Approach to Mental Health Services, Third Edition, 2012.

The first proposition of their Strengths Model is: “The quality of niches people inhabit determines their achievement, quality of life and success in living”.

Here I address an equally important principle underlying the Strengths Model: “People who are successful in living [with mental illness] have a meaningful relationship with at least one other person.”

As a person living with mental illness, I have been fortunate. I’ve had two relationships especially meaningful and empowering to me at most times throughout my adult life. One meaningful relationship was with my husband, Jim. We had the great good fortune of always being able to talk over the hard issues of mental illness. He was, and is, my sounding board and advocate, too. Important also to me was the relationships I’ve had with a succession of strong women mentors. Sometimes that second person was a colleague; sometimes that person was one of my psychiatrists, but a second meaningful relationship was nearly always there.

Why was that second meaningful relationship so important? At times I was unsure just how objective my husband could be. “Of course,” I might (and sometimes did) think, “my husband will encourage and believe in me; he is my husband.” Jim would “have” to be on my side. In the face of negative thinking, a second meaningful relationship was very helpful.

These Meaningful Relationships are characterized by a partnership which is Reciprocal, Empowering, Genuine, Trusting, and Purposeful. Partnerships that intentionally strive to avoid Spirit-Breaking words and actions and focus on Hope-Inducing Behaviors.

It’s also a partnership characterized by continuity in the face of struggle.

For little did I know then how many persons with mental illness lose the support, understanding, respect and love of those with whom they had meaningful relationships, as they progress through life.

I will continue to write about these special partnerships and their characteristics. For these are relationships that can ignite and fuel successful living with mental illness.

The Strengths Perspective

Here’s a statement that intentionally “turns around” our usual way of evaluating mental health outcomes: If we want a successful mentally ill person, we could create a group home and help the ill person thrive within it. But if we want, simply, a successful person with mental illness who thrives in the same community with everyone else, we should help them find persons and resources in the community that will empower their strengths and also help them persist and persevere in working to minimize the disabilities brought on by their mental illness.

You help them persist and persevere by engaging them in their areas of strength, not in focusing on their deficits and defeats.

This suggests we should use a strengths model, rather than the problem-based or deficit model for providing services to those suffering from mental illness or disorder.


 

I first heard of the Strengths Model back in 2000, when I was in graduate school studying community mental health from Professor Charles Rapp’s perspective. A recent text co-authored by Charles Rapp and Richard Goscha, The Strengths Model: A Recovery-Oriented Approach to Mental Health Services, Third Edition, 2012 simply reaffirms its importance in my thinking. I learned to focus on an individual’s strengths as building blocks to manage a situation or a life. I believe that people with mental illness would be >much< better served if all of mental health services had a strengths-based foundation rather than the traditional deficit- focused orientation.

“The strengths model posits that all people have goals, talents and confidence.” Furthermore, “All environments contain resources, people and opportunities.” (Link) But with the deficit-mindset, our perceptions of these are limited and modest and full of considerations of barriers and pathology. Strengths pale in comparison to the deficits.

“The strengths model then is about providing a new perception. It allows us to see possibilities rather than problems, options rather than constraints, wellness rather than sickness. And after being seen, achievement can occur.

It is Rapp and Goscha’s belief that if those involved in mental health services and policy insist on the “muck and mire of deficits” perception, we cannot be of effective help to all of those affected with mental illness.

I learned that the Strengths Theory has nine key propositions. Several of the nine are block-busters that can explode our current ways of thinking about mental illness services.

Here is their first key proposition: The quality of the niches people inhabit determines their achievement, quality of life and success in living.

A niche is defined as the environmental habitat of a person or category of persons. There are two types of niches at the extreme: entrapping and enabling.

Here are four characteristics of entrapping niches (there are others):

  • Entrapping niches are highly stigmatized; people caught in them are commonly treated as outcasts.
  • People caught in an entrapping niche tend to “turn to their own kind” for association, so that their social world becomes restricted and limited.
  • People caught in an entrapping niche are totally defined by their social category. The possibility that they may have aspirations and attributes apart from their category is not ordinarily considered. To outsiders, the person is “just” a bag lady, a junkie, a schizophrenic….and nothing else.
  • In the entrapping niche, there are no graduations of reward and status. …… Thus, there are few expectations of personal progress within such niches.

Here are four describing enabling niches:

  • People in enabling niches are not stigmatized, not treated as outcasts.
  • People in enabling niches will tend to “turn to their own kind” for association, support, and self-validation. But often the niche gives then access to others who bring a different perspective, so that their social world becomes less restricted.
  • People in enabling niches are not totally defined by their social category; they are accepted as having valid aspirations and attributes apart from their category.
  • In the enabling niche, there are many incentives to set realistic longer term goals for oneself and to work toward such goals.

The strengths model proposes that finding, cobbling together or creating enabling niches should be the major focus of work for mental health services and professionals. The authors continue, “There is good reason to believe that the niches available to people with psychiatric disabilities influence the recovery process and their quality of life.” (pp. 37, The Strengths Model)


 

I am thunder-struck, when I think of my life and the quality of my life and its influence on my recovery process. A few thoughts:

I have been very fortunate, that the niches in my life have been enabling in my recovery journey with mental illness. I’ll look at a variety of life domains: home or living arrangement, work, education, recreation, and spiritual . Yes, I did a lot of work to gain recovery….but I had a stable set of niches or habitats. Read on:

I lived in a home all the years I have had an illness.   And since the very time of diagnosis and onset I had my own family …… a loving supportive husband and 5 year old daughter and I was pregnant with our second child. We still live in our own home, although it is a different house now, for after 30 years our children are grown. They are fine and healthy and love and care for us as do our two grandchildren. Jim and I continue to enjoy a rich relationship with each other and with our family.

I have had rewarding work. I was employed at St Mary’s Hospital Medical Center and at two nursing homes and one small alcohol and drug rehabilitation hospital as a Registered Dietitian (RD). For 15 years I also taught as a clinical instructor and later lecturer in Nutritional Sciences Department at the University of Wisconsin-Madison. After this career within dietetics, I turned to the mental health field.

I had been able to earn an undergraduate education without much trouble. But much later, when I returned for graduate school, I had a relapse and asked for accommodations. My request was met professionally and I was able to complete the work after some delay but with full effort. I am happy to say that I received my Masters Degree in 2003 from Southern New Hampshire University. In 1993 I had begun a 20 year career of volunteer work with NAMI. After 2007, I joined the staff of NAMI Wisconsin as their Coordinator of Family Programs.

All this work was challenging with a mental illness, but I certainly had roles I valued and that other people valued which were separate from the “role” of being a person with a mental illness. AND NOW, recovered and moved by my life experience I write about mental illness issues and affirm the lives of those who live with them. Today, this website is my vocation in more ways than one.

I’ve lived a whole, stimulating and enjoyable life in large part because the places and people – the niches – I lived in and among were consistently empowering. We must strive to have these empowering environments available in reality for all people with mental illnesses!

No fault; no blame

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.

Communities in Action to Prevent Suicide, part III

A core value, again taken from The Way Forward, that Ursula Whiteside highlighted during her keynote:

Preserve dignity and counter negative stereotypes, shame, and discrimination

“The negative perceptions of behavioral health issues and subsequent discrimination pose major barriers to help-seeking.” …. “Stigma, negative stereotypes, and discrimination (covert or subtle) are particularly damaging when we already suffer from depression, hopelessness, damaged self-image, trauma, self-doubt, and shame – thoughts and feelings common during a suicidal crisis. In contrast, when we are treated with dignity and compassion, it reaffirms our sense of worth and value.”

My second psychiatrist (and each of those who followed) treated me with the dignity and compassion I needed to progress. It made a HUGE difference. One appointment I’ll never forget is the day I thanked him for NOT telling me ‘my difficulties’ were that I was ‘too sensitive’ (as I had been told by my first psychiatrist) . My doctor got very still, sat up straight, looked me in the eye, and said, “Gail, it’s not that you are too sensitive. You have major depression. It is an illness for which we will pursue and persist in finding the right treatment combination for you.”

He treated me with full dignity by clearing up any chance that I would misunderstand ‘sensitivity’ for major depression. Or think that ‘my difficulties’ were only that, ‘difficulties,’ and that they were something I caused. I felt affirmed and clear about the real lesson I was learning.

I particularly like this core value because it is so active…….counter stigma.

You can see from the photographs that Dr. Whiteside – Ursula – is younger than I. Her experience and youth were very helpful as I gained insight on how to reach to a younger public than I am used to addressing. She does social media very well; I need to go there too. The mid-part of her keynote presented her vision developing www.NowMattersNow.org into an online public resource focusing on strategies for managing suicidal thoughts and intense emotions. Ursula introduced us to her colleagues: Team Now Matters Now. I smiled with pleasure as one of the team members mentioned was Marsha Linehan, PhD, clinical psychologist. Nothing more was said about team member Marsha … But it’s worth noting that Dr. Linehan is the creator of Dialectical Behavior Therapy, the psychotherapy that has helped so many people with borderline personality disorder. She is well known and admired for her work.

DrUrsulaWhiteside    DrMarshaLinehan

Ursula summarized what she and Team Now Matters Now had learned from suicidal people working through a crisis. Here are some of these points (underline emphasis is Ms. Whiteside’s):
Be fully present with me
• Help me hold my pain ( so I feel less alone in my pain)
• I feel helpless, broken and scared
• Discuss with me my diagnosis, as it is in the charts and go thru the DSM criteria with me
When including family and friends, tell me and let me decide who and how
Help me empower myself
• Gently examine my paranoid thoughts with me
• First I need empathy, a witness (rather than fixing)
Know that I am telling you about my suicide ideation/plans because I want to live, I want help and I want to work together

About Partnerships … thinking about enhancing care and support within them

46 years. That’s how long my husband and I have been married.  And it was 50 years ago when we first dated, a sweet memory today.  Jim has always been the very kindest, most fun and interesting man I know.  Our kindness toward one another is a key to our relationship, especially when the water wasn’t so smooth due to effects of mental illness on my thoughts, feelings and behaviors.

My partnership is our marriage.   It is the most supportive aspect of our lives together.  It is, it turns out, quite a bit stronger than mental illness.  Yours may be another partnership – marriage is not the required word, but supportive is.  How do we support our partner without being overwhelmed?  How can we be supported without having to feel we’re a burden?  I don’t have all the answers, but we do have some suggestions here based on our experience.

From Shame – Moving Toward Healing

During the recent half decade I have been so fortunate, as Brene Brown* describes, to have completed the journey from the “not being good enough” shame struggle to believing and knowing “who I am is enough.” Shame from having mental illness has left me. Shame from being related to other people with mental illness has left me also. I have been graced.

I only recently realized I had made this journey. I understand now how much shame – and my growing resilience in the face of shame – had influenced the course and depth of my mental illness through the years.

It didn’t happen, this journey to being shame-free, automatically. I happened to want to do what is recommended for building shame resilience for other reasons; I wanted to help others cope with mental illness. Often, as part of my work, I told my story of family and personal mental illness. I didn’t realize then, twenty five years ago, how much nurturance I would receive from assisting others.  My story of the power of shame and how I arrived at healing from shame follows …. [Read the Full Article]

 

*   Brene Brown, PhD, LMSW   Audio lecture, 2012: Men, Women & Worthiness, The experience of Shame and the Power of Being Enough.  Available on CD at Soundstrue.com  PO Box 8010/Boulder CO  80306.