2010 Recipient

Tough Grace: Mental Illness As A Spiritual Path
By Alice A. Holstein, Ed.D.

From the acceptance speech, May 12, 2010 as the third annual recipient of the “Shining Star Award” given by the Mental Health Coalition of Greater La Crosse, Wisconsin at a reception sponsored by Don and Roxanne Weber. 

Dedicated to those not in attendance, such as those in our jails, underneath our bridges, at the Salvation Army, in psych wards and in one of our 4-5 households affected by mental illness. The war they fight is often unheralded, unclaimed, full of sacrifice and pain. We need to honor them and their families for the heroic deeds they undertake just to live. 

© Alice A. Holstein, Ed.D. 2010

This version of my story is based upon one of my deepest passions—how I have come to view my illness as a spiritual path. Accordingly, the title, “Tough Grace: Mental Illness As A Spiritual Path.” I am taking advantage of my bully pulpit today to create some understanding about mental illness by sharing my story of struggle and triumphs.

Where I’m headed with this subject is to talk first about some of the lemon parts that went into making lemonade, including some examples of the losses that we incur as we battle getting well. Then, how I healed—what transformed me. Finally three different perspectives on why this has turned out to be a profound spiritual path. But first, what do I mean by the word, “spiritual?” I believe that everyone must define it for themselves. To me it means that which guides and supports me, that which provides meaning and purpose all wrapped up in a reverence for life.

My illness has been manic depression, characterized by the high highs of mania followed by the low lows of depression with periods of normalcy in between. I had a tougher time with this illness than many for a variety of reasons.

You can see some of the symptoms of the illness in the following list of “Ain’t It Awful” experiences. I had 13-14 hospitalizations and probably 15 manic episodes over 12 years. I can see, in retrospect, 20 years of symptoms, starting in the 1980s, 12 of them psychotic. My worst symptom was paranoia; I believed that there was a giant drug and vice conspiracy operating everywhere so there was nowhere to go for help. I was argumentative and disruptive. The police picked me up more than several times. I bought three cars I didn’t need and had eight adverse reactions to various medications. I went on spending sprees that cost thousands and had back-breaking medical bills. I was guilty of reckless driving. I had three car accidents in one year. Fear drove me to travel far from home, to some ten states, not exactly the vacations I would have planned. I created unbelievable messes, fouling my financial affairs, packing up my house, giving things away, leaving belongings in various places that then had to be retrieved over long distances. I intruded on other people’s time and property 

I spent some 6-8 months living on the streets in Arizona, Colorado, Minnesota and Wisconsin, not because I didn’t have assets, but because I got separated from them or was too paranoid to tap them. Sometimes I walked all night just to keep warm; I went hungry for five days one time and eight days another. I slept in several homeless shelters, plus a soup kitchen where we were packed in like sardines, lying on thin pallets with one blanket each. Then there were the several battered women’s shelters, several cardboard boxes, the cement one time and many open fields. 

I had 3-4 Chapter 51’s (meaning when you are judged a danger to yourself or others, go to court and then are sentenced to various treatment stipulations). I had grandiose beliefs about my abilities or powers plus delusions and impaired judgment. I experienced flashbacks and suffered from PTSD. I had several debilitating depressions where I felt hopeless and sad, worthless, had concentration and memory problems and barely the ability to function at all. I also had some experiences of being treated inhumanely, which made me feel battered by the system. But I did some genuinely crazy things that are known only to my caseworker and me; some are known only to me because they are so mortifying though some are lost to memory. 

The hardest situation of all to deal with is what I call the “psychic split.” This is an invisible pain that is never treated. It means that there was the “crazy Alice” and the “normal” one that had to be integrated after a manic episode. The thing that makes this integration so painful is that what you have felt, thought, done and seen is so mortifying and shame-filled that it is hard to put the pieces back together again. Sometimes this task took me months. In an overall sense it has taken a very long time to heal. The shaming of society can be painful, but it is the self-shame that was worse.

Another hard situation to deal with was the cost of the illness. I estimate conservatively, that mine cost one million dollars. Half of that was mine—in spending sprees, messes, out-of-pocket medical bills, lost income, lost investment interest and reduced social security benefits that will plague me for the rest of my life. Half of it was borne by others—medical bills paid by other institutions, police and extensive casework services, taxes I didn’t pay and disability benefits.

Besides the “ain’t it awful” experiences, however, I also had some mystical experiences, some very creative periods and some magical help. But those are another story.

Other invisible things that are hard to bear with a mental illness are all of the losses that we incur. Hardly ever is the grief associated with them treated. For example, I lost possessions and personal keepsakes, a sense of safety, my health, my potential and identity, a career and several jobs. I lost dignity, self-respect and self-esteem, thousands and thousands of dollars, friends and colleagues, the ability to handle stress. I lost my youth, including what should have been some of the best years of my life. I lost my body image when I gained 50 pounds over my present weight from medication side-effects. I lost hope and structure in my life, plus physical strength and respect from others. Stigma and discrimination are real. 

One time I lost companionship in a severe sense; on my trek from Arizona to Wisconsin, by car, on foot and by bus, I suffered abject loneliness for about five months. Many times over the course of 12 years I lost time and my mind. I also lost the will to live at times. I lost the ability to think clearly and make sound decisions. I lost community and any semblance of a so-called “normal” life. I was once a proud career woman with a doctoral degree and a privileged life. There were several prestigious clients in my consulting background and I lived in beautiful surroundings in Tucson, Arizona. But I was reduced at times to being a genuine bag lady and otherwise had continuous manic episodes that kept knocking me down for 12 years. 

But for four years I have been in solid recovery and it is important to know why and how I healed. What transformed me? The process began with an intention in 1998. I got mad at the doctors bleak prognosis and decided that I would be as well as I could be. After that, despite periodically being very sick, I turned over every rock that seemed to offer help. I did some 50 things, such as energy healers, acupressure tapping techniques, Reiki, a variety of self-help methods, research, videos, spiritual direction, meditation, family constellation workshops, exercise, changes in my diet, support groups and much more. Some of it cost money; some cost very little and some cost nothing, but I lived an austere life to be able to afford help. I am proud of the work that I did to get well. 

I also had a few people in my corner, such as my caseworker, Mary Speltz, without whom I would be dead. I also had some life skills, some previous success, age and experience and a good mind that stood me in good stead. I see now in retrospect that I cobbled together my own recovery program without any particular design, but that I unconsciously pursued healing at all levels—physical, emotional, mental, spiritual and social. I also healed the underlying trauma, which in my case included sexual molestation and family alcoholism.

One of the most important aspects of my survival, however, is the fact that my life was saved hundreds of times by acts large and small. Some examples are telling: In a soup kitchen in Colorado Springs, where I had been sleeping on the floor for several nights, a woman worker came up to me one morning with a beaming smile, saying “here honey, maybe you could use these” as she offered a pair of thick-soled tennis shoes. Also in Colorado, a taxi driver gave me a free ride to that shelter. Several churches gave me $20 to solve immediate crises. 

In a laundry in Minneapolis, as I was sorting through discarded socks to use as mittens, a man folding his clothes from the dryer gave me $20 without my asking for it. That bought me the taxi ride to the next shelter. In Colorado Springs a woman and her family gave me a ride to the hospital; in California a couple took me in for a week. In La Crosse a nurse just held my hand and listened as I sobbed in despair over the threat of being institutionalized at the state mental hospital. When I had a near-death experience, triggered by the fact that I’d been off my thyroid medication for months,( which is life-threatening) a Franciscan sister just listened, without advice or trying to talk me out of my death thoughts. 

Whenever people just listened to me I felt strengthened to go on for the next few hours or days. I could bear the unbearable when I was merely validated by compassion, not advice or logic. I also had some other kinds of miracles. One time, while running down the road in a thin pair of shoes, I came across a pair of sturdy oxfords just my size lying alongside the road. Another time I found a pair of warm gloves on a park bench along the river, and not far away, a windbreaker wrapped around a tree.

All of these things and more helped me see that I had been protected and helped all along the way. From this I developed a rock-solid faith. It seemed as though “God,” however you understand that term, came often in the form of little people or ordinary people whose acts of kindness kept me alive to tell this story. These things alone add up to my conclusion that mental illness can be a spiritual path. 

But there is more. One of the most important things I did to promote my healing was to reframe my experiences. To reframe something means to shift perspective, to see something in an entirely new way. It means making lemonade from lemons; it means seeing the glass half full, not half empty. This reframing helped heal my psychic brokenness. 

One aspect of this reframing was to see suffering as a purifying experience. I found a tape by Carolyn Myss called “Spiritual Madness” that revolutionized my thinking. In it she said that spirituality is usually portrayed as sweet and easy and this is not to be discounted, but that it is often filled instead with hardship, pain and suffering. There we are tested and tried. There we are taught things such as humility, surrender, endurance, compassion, facing all our fears and even the despair of being abandoned by God. I listened and listened and listened and took notes from that tape—and healed several more notches because I identified so much.

Then there is Sister Joan Chittester, a Benedictine nun who came to La Crosse in 2002 and is one of my heroines. She wrote a book called Scarred by Struggle in which she writes about suffering. “I learned that struggle tempers the steel of the soul. It straightens the backbone and purifies the heart. It makes demands on us that change us forever and make us new. It shows us who we are. Then we make choices, maybe for the first time in life, that determine not only what we’ll do with the rest of our life, but what kind of person we’ll be for the rest of it.” (p. 85) 

Another big aspect of my reframing was to find the “Hero’s Journey” and what it means. Some of you may remember Joseph Campbell’s series of interviews with Bill Moyers on PBS some years ago. The book produced was The Power of Myth because Campbell studied myths all over the world and found their common denominators. His specific study of the hero’s journey gave me an enormously hopeful view about the trials of manic depression. His ideas are a major contribution to the reframing I did to recognize the underlying wholeness of mental illness. 

But just what is this journey? It is a series of stages or experiences, a universal spiritual path. They require suffering before you find a new sense of life and meaning. They apply to initiation rituals in tribal societies where there is psychological transformation; they apply to the mid-life crisis or to people who suffer serious illness or to their care-givers. The stages and the process apply to the families of the mentally ill who are often required to deal with extreme hardship. Indeed, there are probably many in the audience who have been forced to the tasks of the hero’s journey in various ways.

Campbell’s stages are departure, or separation from all that is known or “normal,” then initiation and return. There are stages within these stages, which you will find if you Google the subject. Suffice it to say that there are tests and trails all along the way. The psychological terms for this experience are that we die to ourselves and our egocentric self to find the deeper or inner self. The religious terms are death and resurrection, which lead to a rebirth where we become capable of unique gifts.

And here are the two most important paragraphs in this speech:
The trouble with mental illness is that we enter the abyss of darkness and too often do not find a way back. We don’t make the return. Instead we are seen as damaged goods, often labeled negatively, which means rejection and dehumanization rather than seen as people, including families who are conducting heroic battles. Both the illness itself and these reactions cripple us rather than encouraging us to seek recovery and wholeness. I submit that this return is not achieved because we don’t reframe our experiences or change the entire dehumanizing language used in the field of behavioral health. We don’t know that brokenness can be healed and that the trials and tribulations of the severest kind can be survived.

We see the glass as half empty rather than the life lessons these experiences teach us. We fail to see the compensations that illness offers as we concentrate on the lemons rather than the tough task of making lemonade. But what we believe matters a whole lot, and if we believed that this was a journey of hardship and suffering that was noble and worthy of the highest esteem, then things could be radically different. This is a revolutionary viewpoint. 

But there is still more to my reframing and healing. There are some important spiritual lessons or gifts. Among the most important is a deepened compassion and empathy. Never again will I see a bag lady, a homeless person, a drunk, a mentally ill person or anyone hurting with the judgment I once possessed. I was one of them, and walking in their shoes opened my heart spiritually.

Not being afraid of death is another gift. I faced it so often in various ways that I see it easily now as just another transition. As Campbell suggests is part of the hero’s journey, one must “just put one’s head in the mouth of the lion and experience it.”

Recovery has also brought an expanded sense of purpose. When I tell my story I hopefully speak for the voiceless ones. I have the skill to do that and I want to optimize the opportunity. In my work life, as a peer support specialist at the VA River Valley Integrated Health Center, I am able to relate to veterans on a “been there done that” basis, providing hope and inspiration. I think it makes a difference. I am living a life of service.

Knowing how to surrender or let go of control is another gift, although I’m still working on this one! 12 Step programs or other religious traditions phrase this as “let go, let God.” I was forced to surrender so often and so deeply that I more easily live in the flow of life; I trust the universe rather than trying to control things or people. 

Another lesson that serves as a constant reminder is to appreciate things large and small. At night I do gratitude exercises faithfully, being thankful for a delicious salad or meal, for a phone call or human encounter, for my bed and clothes, for the change of seasons, for my peace of mind and happiness. I am thankful to be alive at all because of the despair and danger I faced.

The journey also taught me to adopt important life skills, such as eating healthily, getting regular exercise and sleep, developing community. I learned how to care for myself and I do that faithfully, which is as much a part of spiritual practice as anything else. I also learned about humility, endurance and courage.

Finally, I tapped core self-knowledge that feels very deep and rooted. As my friend, Maria, says, you find out who you are when your back is against the wall. I know my capacity for suffering. I know what I endured and that I am both fragile and very, very strong. I know the people and events that “saved” me countless times. I know how listening heals. I know what I claim as my own dogged work. I know how much of it was grace. I know the sources and depth of my faith. I see that this illness has been a profound journey to the soul, a blessed path and that I am just beginning to share my bounty. I know that this journey has been a bone-crushing path, but I choose to call it “tough grace,” and that has made all the difference. 

From homeless to Shining Star Award winner

Click on the link or Copy and Paste the address into your internet browser window.
http://www.lacrossetribune.com/news/local/article_ec73e2b2-5e3e-11df-9ca8-001cc4c03286.html