“If you come to help me, you are wasting your time. But if you have come
because your liberation is bound up with mine, then let us work together.”
– Lila Watson, Australian aboriginal activist
Leonard Roy Frank’s boyish curiosity and hunger for knowledge made him seem so young to me. I was shocked to learn that Leonard had died – “shocked” — an ironic word to describe my thoughts and feelings, but perhaps most fitting to be linked with Leonard. His experience as a psychiatric survivor of reprehensible “treatment” propelled him into being the passionate activist who inspired me and many others to hold psychiatric services accountable and demand social justice.
Reflecting on my own work, where I am now, what I believe, and what I see as progress, or a lack thereof in understanding the painful angst that is so much part of our journeys through life, I began reviewing my thoughts, writings and the various talks that I had given. I had once used the concept of Occam’s Razor to examine past and present thoughts about how my two sojourns into the bowels of psychiatric hospitals were instrumental in defining me back then and how that experience would evolve and integrate into who I am now. What I believed to be true back then still resonates for me and serves to keep me rooted, yet allows access to future growth.
I have devoted more than 40 years to the study of extreme mental states – my own and others. I have witnessed the extraordinary ability of people to survive and thrive after living through horrendous experiences. Remarkable feats of resilience attest to our untapped potential.
I am drawn to the words of anthropologist, Edward Hall. He said, “The failure to fulfill one’s potential can be one of the most damaging things to occur to a person.”
After 25 years of stops and starts, the ongoing struggle to learn how to effectively write and articulate what I believed, I self-published what was in my heart and memory, my book, A Fight to Be: A Psychologist’s Experience From Both Sides of the Locked Door.
I began writing to clarify my experience with madness and to learn how I developed into who I now am. The writing went through many revisions as my experience with madness and change mixed with new experiences, churned in my psyche and demanded a more nuanced understanding. I had to let go of the anger and work through grieving for what I had lost. I fought to remember, bear witness and give testimony. I am forever grateful to Leonard for his critical reading of my work and his suggestions.
As part of my self-directed study to improve my writing, I began reading the works of the great writers. I avoided reading other people’s accounts of their psychiatric experiences. I was afraid their stories and mine would merge. I knew that I had to very carefully hold onto what I could remember. Because of the memory losses I suffered from the psychiatric “treatments”, I recognized the danger of taking on an Other’s similar experience and confusing it with my own.
While reading Dostoyevski’s Brothers Karamazov I came across a statement that resonated at a deep level. “The most difficult thing to do in life is to live without lying and not believing one’s own lies.” That quote, that theme would guide my writing and become an integral part of my life’s journey. I copied it; framed it; and took it with me to hang in whatever office I would come to use.
I weathered the high hopes and disappointments of several book publishers’ interest – and then the rejections when I refused to write my story in the way that they thought would generate sales. I endured the frustration supported by my wife Lindsey’s belief in me and my own unwillingness to give up the idea that I had meaningful things to say. My stubbornness or more positively viewed as perseverance was and is a trait that I would not moderate despite what has been suggested to me as the benefits of bending – maybe just a little bit.
For a long time I had resisted Lindsey’s suggestion that we self-publish and I was only convinced to do so when a friend reminded me that in many indigenous cultures one’s story, when it has potential value to the village, is owned by the community rather than the individual. His advice was the push that I needed to let go of the ego and pride that kept me knocking on inaccessible doors.
During the time we were waiting for the book to be printed, Lindsey and I were constantly aware that her mother was very close to death. Due to extreme peripheral neuropathy, she had lost just about all motor ability and remained in bed most of the day. Up to then she had, with the aid of personal assistants and nurses, been able to continue living in her own non-institutional apartment. When home hospice care had begun, we were racing the clock, hoping to be able to get a copy of my book to her. That book – my life and work were the subject of many discussions between the three of us over the years.
When the first books arrived from the printer, we drove the 5 hours to her home. I laid the first copy in her hands. She held it there and seemed to be mentally weighing the book. She looked down at it for a few seconds, looked up at me, looked back at the book and said, “It took you 25 years to write this little book.” I burst out laughing and then sat down on the bed, held her hand and began reading my book to her.
The laughter we shared reminded me of an Email exchange I had with professor Bill Anthony, psychosocial rehabilitation’s pioneering trainer and theorist. He told me, “It is difficult to be humble when you’ve written a book about yourself.” I have learned the hard way that wanting to be special opens a dangerous door. Extinguishing as much ego as one can within oneself is a formidable task that I continue to work at achieving.
In 1966 I did not have the physical nor mental agility to avoid capture in the large and powerful psychiatric net hurled over my being. More damaging and difficult to escape was the subsequent tattoo of my new label – paranoid schizophrenic. Those psychiatric artists were revered for and societally justified in the application of their craft by 4 damning words, For Your Own Good. Of those words renowned author and fellow traveler Janet Frame wrote, “For your own good is a persuasive argument that will eventually make a man agree to his own destruction.”
The diagnosis, paranoid schizophrenia, was etched into my consciousness with seizure-inducing currents of electricity and coma-inducing insulin treatments. And like other tattoos it has been extremely difficult and painful to remove.
Give it a name, have something to call it, and the unfamiliar darkness takes on the illusion of light. It is still murky and unknown, but now you feel that it is understood and predictable. If you get others to accept the name, then they too respond accordingly. There is validation, but is this rational? Is this our reality?
In June 1966, I earned my Masters Degree in clinical psychology from Temple University and three months later celebrated my 23rd birthday by being drugged, restrained and confined to the seclusion room of Fair Oaks Hospital. Not my idea of a birthday celebration, but a birth of sorts – a naming ceremony for my new identity – Paranoid Schizophrenic.
Fair Oaks, a private mental hospital in Summit NJ, held me for 6 months and at first “treated” me to massive doses of Thorazine, and Stelazine while throwing in Artane to deal with the side effects. Those drugs failed to make me compliant, that is, I refused to give up my search to construct the a new identity which was temporarily manifesting itself in what was called psychotic thinking.
I demanded my rights. How naïve and foolish I was to demand autonomy; to be the one to decide on what risks to pursue in my search to define me in my own way. I told them that I didn’t need their protection. I would not worship safety at their altar. I was 23 years old, but I was still in the throes of teenage rebellion trying to find out who I was.
They insisted that I give up my sense of self – my newly forming still fragile quest for meaning – my identity. My naïve innocence, my futile beseeching to be set free, my ever-repeating cries, my mantra THIS IS NOT FAIR forced them to see no other option than to give me a series of 40 insulin comas combined with electro shock. Five days a week for 8 weeks I endured their assault until I was too weak to scream for my rights, or to continue my plaintive cries that this was not fair. I was to learn what comedian George Carlin said in one of the humorous riffs he used to jolt us out of our belief that we have rights. No, he said, we don’t have rights we have privileges and privileges can be taken away.
I left that hospital cured of my grandiose notions, no longer paranoid, no delusions, no hallucinations, huge gaps in my memory, slowed in thought and movement, and without even the energy to contemplate who I was, what I had become or what possibilities, if any, the future offered. I had no energy to be suspicious or hopeful and I didn’t care anyway. Yes with their broad brush, they had vanquished my symptoms, but what if anything of me was left?
For years I looked at my breaking down and giving into the psychiatric assault as proof of my weakness. In my heart I knew that I would never again be the comic book hero. My myth of invulnerability was punctured. I could be broken under torture. No more dreams of inviolable principles. I could be stripped of everything – identity, dreams, ideals freedom to move or even to think. My dreams were bashed and I only had nightmares to replace them. We all need dreams!
For the next three years I worked to get my memory back, to find a job, a dream, something that would enable me to get a life. I made progress: That first year after my discharge I stopped taking Thorazine and Stelazine. But, I could not overcome the sadness, the lethargy, the absence of motivation.
After a few years, glimmers of hope emerged. My mental acuity began to come back. I saw vaguely lit then increasingly brighter paths that I hoped might lead me into growing into the person I wanted to become. Now, looking back, I could say I had glimpsed a hazy image of a path to developing – the “becoming” that psychologist Gordon Allport thought was so important. But after 3 years of growth and development, I was again hospitalized.
I was devastated. Why did this happen again? Had I grown too quickly without grounding – without integrating my experiences – wanting too much – wanting to forge ahead too quickly? Another 6 months in the hospital – this time a state hospital. This public hospital was not as nicely appointed as a private institution. The food sucked and the coffee was not real coffee, but I was glad for its one distinct benefit; they did not do insulin or electro shock treatments. But as before, I was subjected to heavy doses of drugs. .
Again, I withdrew from the drugs after my release. And again it was more than a year before some of my energy, motivation and mental acuity returned. I was close to giving up. How would I ever be able reject my label? Would I always have the specter of re-hospitalization hanging over my head regardless of what I accomplished?
I have thought long and hard about my experiences as both a patient and a seeker of meaning, as a therapist, as a psychiatric survivor, as a peer, as an advocate, as an activist, as a change agent, as a husband, and as a father. Who am I? How did I transform myself into who I am now – someone who does not take psychiatric drugs, who is considered a well-grounded, reasonably contented, competent individual?
I strongly suggest that if we are to assist those who are diving too deeply into the mysterious raging sea of an altered state of consciousness, we must not offer premature lifelines. The heavy emphasis on safety often exacts too steep a price.
What is the significance of Occam’ Razor in relation to the principles and values I believe are important? The English philosopher, William of Occam who lived from 1300-1349 said: “Entia non sunt multiplicanda praeter necessitatem.” Latin for: “Entities should not be multiplied more than necessary.” Or his words may be read as: “The fewer assumptions an explanation of a phenomenon depends on, the better the explanatory principle is.” Or “All other things being relatively equal, the simpler of two competing theories is to be preferred.” All of the above seem reasonable so I need to explain what I see as a problem.
I suggest that the problem lies in oversimplification. It is Occam’s Razor becoming the law of parsimony. The excessive use of economy in making our decisions eliminates too much of what is valuable. Used judiciously, this razor of Occam can work well in simple situations. But that is the rub for us. We are not so parsimonious. The simplest appearing things are often very complex. And we who deal with the vast array of factors contributing to or inhibiting the development and expression of one’s authentic self must be actively aware of the complexity and mystery of being an individual human, and the instability of our current state of knowledge. When we put a person in a category, we save time but lose much useful information. We shape and twist too much material to make it fit.
Our operating knowledge is based on our education and our lived experience. What happens when education and experience do not fit together? How do we develop the belief systems we use? Are your beliefs and their underlying assumptions the same as the person you might be sitting next to in a movie theatre? Doesn’t our belief system shape how we take in information and guide how we treat people? What do we do with the person who does not match our expectations?
Surely we need a wider array of supports and approaches for people. Even the original DSM , the one used to diagnose me, had 8 different kinds of schizophrenia listed, despite being less than 50 pages..
I think we can guard against going off course by looking at how people live their stories. What do they do when the unfolding events do not match the script that they and their families planned and envisioned?
* * * * *
Too often, the mental health professions have constructed spurious answers to our most troublesome questions about madness. The answers are bound to speculative assumptions derived from ever-changing favored theories. When complex individuals who share similar elements of diverse experience are reduced to symptoms and pathological syndromes, their personal and special life stories are misunderstood. To enhance our understanding of the myriad altered states of human consciousness, we must not ignore the unique and precious stories of individuals. We should not cheat the narrators from discovering and revising the stories for themselves.
Medical anthropologist and cancer survivor Arthur Frank writes about how life changes when one’s being is disrupted by illness. Our capacity to reconstruct our interrupted stories offers transformative opportunities. And when those who survive and thrive bear witness, their testimony helps others move through the experience of an illness-interrupted life. Re-constructing the stories offers hope, possibility and choices that can give meaning to our experience and help us move forward rather than remain mired in our pain.
Will today’s state of the art treatment be regarded by future historians in similar ways to discarded treatments of the past – the dunking, leeching, organ and teeth removals, lobotomies, the insulin coma treatments, electroshock and the chemical straitjackets legislated as Kendra’s Law in the state of New York and euphemistically called AOT – Assisted Outpatient Treatment? Few feel like they are assisted when they are forced against their will to do something in their best interest. Those 4 words “For your own good” have become too much of an accepted a tenet of public mental health systems.
Psychologist, Frank Reissman – a strong advocate of self-help groups, investigated, and participated in various configurations of peers helping peers with all sorts of health and mental health problems. He saw the benefits and named it the “helper therapy principle.” When you help someone else, you feel good and reap benefits for yourself. Aren’t most forms of treatment more useful when they are regarded as a collaboration where growth and development permeates the relationships?
Let us embrace the richness and diversity of human being. Most of us are aware of the beauty brought to us by those who are different – those who do not fit the normal mold, who have denied the pulls and pressures of the culture from which they have emerged to bring us art, literature, poetry, music, science and technology. One does not need to be crazy to be creative, but I do believe that when we do not leave enough room for freedom of self-expression, and when we are too fearful of the risks required for exploring new ways of being, we diminish our place in the universe.
I would be foolishly presumptuous to assert that everyone who steps through the doorway into the unknown has made an active, conscious decision to do so. But would I be more or less foolish than those who proclaim that passage into madness is preordained by one’s genetic makeup?
No one is immune to the physical and emotional pain of living. Such is life and perhaps especially so in these times that we live in. Who would not want a quick fix…a pill…a strategy that works quickly with no ill effects; one that would not interrupt the pursuit of our potential or corrupt our values?
I wrote in A Fight to Be a list of some of what supported and propelled me forward on my journey.
“Hope, safe niches, natural supports, reconciliation with family, the absence of irreversible damage from treatment, self-discipline (development of will), belief in myself, successful experiences, meaningful work, psychotherapy, intimate relationships and the passage of time were all significant in my movement out of the mental illness role into becoming a valued member of society. The varied combinations and relative importance of each of the elements were unique to me, yet I believe that some of the above identified concepts are common to others’ transformations. But each of us defies set formulas. For all of us, the timing and options are different. Underlying all of the above is the question of whether a person has the freedom to choose.”
Of great importance to my growth was the development of the capacity to be part of a full, loving, intimate relationship. To be able to trust enough to let down my guard and defenses, to be able to be open to another and allow myself to give up some of my hard-won independence was an imposing hurdle. Developing the trust, the love and full sharing with my future wife was an essential step in separating myself from the specter of another potential collapse into the not-person world of the mental patient.
The passage of time holds critical importance. Staying out of the hospital was essential to my development of self-confidence. It is easy to measure success by the increased time you are able to take care of yourself and live in the community.
Progressive thinkers in the recovery movement point to the non-linear nature of the recovery process, and although I agree with the non-linear premise, each setback, even if short and less intense, becomes another blow to one’s fragilely developing sense of self-efficacy and self-esteem. Hospitalization is not a good option and should be avoided. Increasingly greater periods of time when you are free are the ultimate proof of growth and change. Assuming that we and the communities we live within are committed to diversity and believe that each person should be afforded the opportunity to seek out their potential and pursue the development and expression of their authentic self, then we must develop more options than biological treatments and psychotherapy.
Changes need to be made in our thinking about mental illness and health policy as a whole. We must have more than a smattering of under-the-radar alternatives to the medical model. People need and desire research to be less dominated by measurable numbers. Randomized controlled trials should not be held up as our gold standard while qualitative research is relegated to that of an under-funded fringe pursuit. People need to have informed options in which the strategies and goals, whether these be relief of symptoms or personal transformation and development are chosen by the individual.
My story along with those of fellow travelers tells us that it is possible to support and elevate people rather than restrict them to a life of maintenance and stabilization. I do not present my journey through recovery/transformation as a model path with road signs for others to follow, but rather as an example of possibility. The opportunity to discover what you can do and be needs to be much more available.
Peculiar to humans is the ability to imagine future possibilities and consciously design a course of action. We are capable of contemplating the prospect of life outside the present moment. Having the capability of governing our instincts enables us to live in precarious balance within worlds of our own constructions. Unfortunately, the struggle to find meaning has become more of a privilege, than a birthright. The quest for identity, authenticity, and the struggle to realize and act upon one’s potential should not be denied. Our human frailties and anxieties need not be at odds with the natural flow and dynamics of an ever-changing universe. It is time to relinquish our reverence of power, and evaluate and modify our relentless quest to dominate nature. Perhaps then we will honor what sets the human species apart (the good and bad) from other forms of life and relearn that we are all parts of a whole.
Today, we are beginning to see marvelous innovations in the services provided to people who are in vulnerable emotional states. Rebirth of Soteria in several places, Open Dialogue, Hearing Voices Groups and other forms of self-help, respite, family-based care environments and other dedicated safe spaces that foster personal development are encouraging phenomena. We are witnessing the valuing of the work that is generated and performed by people with lived experience. Also, an increasing number of professionals are recognizing that it is possible and often productive to do genuine psychotherapy with people whose dire diagnoses were in the past considered beyond the reach of anything more than supportive counseling.
Yet the above progress although valuable for those who are able to avail themselves of those services does not address what to me are core issues. Treatment services and medicine have their uses, but what about those for whom this is not the optimal choice? Many who are struggling to find their way: consumers/psychiatric survivors, those with cognitive or sensory, or other physical disabilities need more creative and substantial assistance than psychotherapy and pills.
We ask for safe affordable places to live (not segregated), educational opportunities, friends, intimate relationships, to have our own families, raise our children, get jobs that give us the chance to advance and be able to see the future with hope and optimism. We cannot continue to rely solely on professionals to FIX people. We need communities that can tolerate, no better I should say appreciate and benefit from difference so that those who look act or perceive differently, can still find a community or social network of their choice where they can be fully integrated and valued.
Counter to my previous critique of Occam’s Razor, I now offer below some simple precepts.
We need more room for people who are differently abled. Space for people to be seen and valued for who they are. Unhappiness, lack of fulfillment and the absence of possibilities will make most of us flail and scramble in attempts to re-organize our consciousness and modify our adherence to consensual reality. I suggest that Treatment Services will always be trying to catch up, operating from behind, and at a disadvantage if we do not honor and understand the need that people have to aspire for valued roles where they can find respect for themselves and from others.
While doing Tai Chi push hands with a friend, an electrical engineer who is very involved in helping to construct infra-structure in developing countries, we began to talk of his dilemma in doing such consultations. He told me that it is difficult, despite the best of intentions, to understand what constitutes positive change and what might generate unexpected consequences. The example he described was a community where women were under-valued and had few worthwhile roles. Their most important work role was to walk several miles to get water and carry it back to the community. Michael wondered what would become of the women’s sense of their value if he helped the village construct a more efficient way to get water.
Our discussion reminded me of an empowering statement that often grounded me: “If you come to help me, you are wasting your time. But if you have come because your liberation is bound up with mine, then let us work together.” This insightful negation of altruistic fixing is attributed to Lila Watson an Australian aboriginal activist.
I close by offering a statement that comes from the late Bella Abzug, New York congresswoman, a lioness who fought for many progressive causes throughout her life. She said, “Never underestimate the importance of what we are doing. Never hesitate to tell the truth. And never, ever give in or give up.”