Remember My Name: Reflections on Spirituality in Individual and Collective Recovery

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By: Patricia E. Deegan PhD October 2004

Copyright © Pat Deegan, PhD & Associates, LLC.
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A number of years ago, I was out walking on the grounds of Danvers State Hospital. It was late March, that time of year when it is not quite winter and not quite spring. The ground was still frozen beneath my feet, but the wind promised a warmth-to-come as it rustled through the leafless branches of the trees. I was looking for a cemetery. I was looking for the place where former patients of the state hospital were buried, when family or friends did not come to claim their bodies.You would think a state hospital cemetery would be easy enough to find. But I had been wandering the fields and scrambling through the thickets and woods surrounding that closed state hospital on four separate occasions, and still I could not find the cemetery. I knew it was there somewhere. I had read the annual reports saying five patients had died and were buried on the asylum grounds in 1878, the year the hospital opened. Six more had died and were buried the next year, ten more the following year, and so on. I had even asked former hospital staff, "Where is the cemetery?" But no one knew. "How the heck do you lose a cemetery?" I asked myself as I continued my search. And later I learned, you don't lose a cemetery. A state hospital cemetery has to be disappeared.

Eventually, I came upon a nearly impenetrable gauntlet of briars and thickets swarming over a crumbling stonewall. Inching my way forward, through the briars and over the stonewall, I spotted a small, round, concrete marker lying flush with the ground. The number 115 was pressed into the concrete marker.

I was puzzled at first, thinking the marker, which was only 3 inches in diameter, might be an old boundary marker of some type. I moved closer, cleared away some debris and knelt down next to number 115 to get a better look. That's when, through the brambles, I saw another marker on my left, number 114. And two paces to the right, number 116. I knew, then, these were consecutive markers, and I was kneeling in the forgotten state hospital cemetery. Who was number 115? Why was number 115 buried without a name? How did number 115 get disappeared in this way and why? And how many more people were lying forgotten beneath this tangle of snaking bittersweet vines and briars?

I photographed the markers and the jungle covering them, and then set about the task of finding out who number 115 was. I began by bringing together a large group of former patients of the hospital. We looked at the photographs of the numbered markers and decided, on the spot, to dedicate ourselves to remembering the names of those buried there. There was no debating, only a certainty that replacing the numbered markers with headstones engraved with proper names was the right thing to do. We intuited that we must do this for ourselves, for the ones forgotten and for the ones who will be diagnosed with psychiatric disorders in the future. In essence, at that first meeting, we declared kinship with those who, like us, had been patients at the State Hospital. It was a kinship born, not of blood, but of intention and recognition of a common experience. It was said that those buried beneath the numbered markers had no family. So we stood up and said, "We are their family. We are their mothers, fathers, sisters and brothers. We will remember their names."

The very first thing we did was go up to the cemetery. We cleared away a little space in the brambles so that a couple of the markers closest to the stonewall were visible. Then we organized a demonstration, and we walked, nearly a hundred of us, across the tired agricultural fields of the old asylum farm, toward the small clearing. Each person carried a flower, a single blossom. One at time, we placed our flowers on marker number 115, as we dedicated ourselves to recovering that cemetery. In this way, we blessed that forsaken place. To us, this blessing was the most important thing of all. With our tears anointing that hard ground, we blessed the cemetery, just as it was. We did not wait to clean it all up. We did not wait for it to be pretty. We did not wait for the briars to be cleared and the memorial shrubs to be planted. Instead, we blessed that place because, having lived the journey of recovery ourselves, we knew that God dwells even in the dirt.

It is tempting to think of recovery as an Easter Sunday type of narrative. Images of light, resurrection, rebirth, spring, and rising come easily to mind when we think about recovery. But these Easter images do not tell of the place from whence recovery begins. Whether recovering a forgotten cemetery, or recovering a life after being diagnosed with a psychiatric disorder, the place where the journey begins is closer to a Holy Saturday narrative than an Easter one. Let me explain.

My faith tradition is Christianity. That is the prism through which I approach the Light. In my faith tradition we believe Jesus is God. On Good Friday, we remember the crucifixion of Jesus and the placement of his body into a stone tomb. On Easter Sunday, we celebrate the resurrection of Jesus from that tomb. But between death and resurrection, there is something else. There is Holy Saturday. In my faith tradition, we believe God descended into hell on Holy Saturday, before rising from the dead on Easter Sunday. In other words, we believe that when laid in a tomb, God began a descent.

Imagine God sinking, permeating, descending, beneath, below, and through each and every crevasse of human possibility. God descending into each and every human hell. God descending into the shriveled belly of a starving child and saying, "I am here, too". God descending into the tangled forgetfulness of Alzheimer's and saying, "I am here, too". God descending into forgotten lives in the farthest reaches of the back wards and saying, ‘I am here, too". God descending into the antiseptic stench of the nursing home and saying, "I am here, too". God descending into the whispered despair of a suicide attempt and saying, "I am here, too".

The Holy Saturday experience is of God descending into every conceivable human hell and saying, "Even here, I have passed through. Even here, I am." Because of God's descent, every human hell is already sanctified. And because God is there, every tomb is blessed with the possibility of becoming a womb.

The Holy Saturday experience is a discovery that the tomb can also be a womb. The tomb can be a place of death, but it can also be hallowed ground from which something new can be born. That is why we blessed that state hospital cemetery, before we had even begun to clean it up. God was in that dirt, and we knew it because we had experienced a similar grace in our own lives.

Those of us who have lived the journey of recovery know something of what it means to be to be laid in a tomb or to be buried alive. We know what it means to have our individuality buried beneath a diagnosis. We know what it means to be called a schizophrenic or a bi-polar or a borderline, instead of being called by our name. We know what it means to be expected to live our diagnosis, rather than our lives. The former patients in the state hospital cemetery were stripped of their names and buried beneath numbers. Similarly, even when we are still alive our individuality is often buried beneath the carefully calibrated numbers of the Diagnostic and Statistical Manual of the American Psychiatric Association.

Many of us also know what it means to be buried under an avalanche of psychiatric drugs. We know what it means to have the treatment be worse than the disorder. We know what it means to be in a chemical tomb, where we feel so drugged we are neither alive nor dead; when we are so drugged that our bodies are stiff and slow and lifeless; when our faces become expressionless masks; when our eyes stop dancing and, instead, glaze over into a petrified stare; when our passion is neutered under powerful pharmaceuticals; and when we are, quite literally, disappeared within a chemical coma. And just like the people who had been buried in a segregated cemetery, many of us know what it means to be buried away in segregated mental health programs, living impoverished lives in the artificial world of the human services, where the only people with you are those who are paid to be with you: a very poor substitute for real life lived in freedom, in fully integrated settings.

Yes, we know something of the tomb. But those of us who have experienced recovery also know the tomb can be a womb. I remember the first time I met God in the tomb. I was in a mental hospital. I was laid out on a cold white sheet, in a Thorazine induced exhaustion. I was seventeen years old, diagnosed with schizophrenia and had been lying on that hospital bed for three days. My body was stiff and heavy from the Thorazine, which had left my tongue cracked and dried and swollen within my parched mouth. A hospital attendant shook my bed to awaken me and helped to prop me up. He said the chaplain had come by to administer the sacrament of communion. I managed to receive the blessing, and as I began to slump back into unconsciousness, a terrible coldness came upon me. I was so afraid! I was afraid because I was so far away and all alone. I felt so desolate, so erased, so utterly disappeared and buried, that no human hand could possibly reach me. And as the drugged darkness began to swallow me away, I remember experiencing God's presence and saying, "It's just you and me. Just you and me God." And that was all. But that was enough.

To find that God was already there; to find that God was already dwelling in that tomb; to find that in the place-where-no-human-hands-could-reach-me, there, already, was my God with the hands to catch my collapse, now that was grace. The Psalmist bursts into praise at such revelations: "Where can I go from your spirit? From your presence where can I flee? If I go up to the heavens, you are there; If I sink to the nether world, you are present there." (Psalm 139:7-10). But I was no Psalmist. I was just a teenager diagnosed with schizophrenia, passing out on a hospital bed. Yet this discovery that God was already present in my suffering, was the experiential foundation of my recovery.

The discovery that God-was-with-me meant I was not forsaken. It meant even when the professionals got it wrong or even when the limits of human helping had been reached, there was still hope for me. No matter how scary, how forlorn, how afraid, how psychotic, how depressed, anxious, panicked, weary, or disorganized I became, God was with me. And importantly, this God had no agenda to change me; no treatment plan for me; no magic bullet for me; no miracle to work on me; and no magic spells to make me normal again. This God simply is, was and always had been there, in my madness, in my pain, in my despair. There's something deeply healing in that. For me, I think it was just the knowledge that I could never truly get lost if God was always, already there with me.

It was deeply healing for me to discover I could never truly get lost, if God was always, already there with me. That knowledge was healing because it promised that schizophrenia was not about being lost. Rather, schizophrenia could be a passageway, and God was already with me as I began to move through it. It meant schizophrenia could be a passageway and not a destination. It meant psychosis was hallowed ground, blessed by God's presence. Understand I am not saying I saw the pathway to recovery clearly laid out before me, in some type of divine revelation. Rather, I experienced a certainty that I could never really be lost, if the Alpha and the Omega, the Beginning and the End, the Path towards which all paths lead, was already walking by my side.

Of course, the high priests of psychiatric orthodoxy would accuse me of heresy at this point. They would say I am terribly old fashioned and unenlightened. They would tell me schizophrenia is a no-fault neurobiological brain disorder. They would say I am naïve to think of psychiatric disorder as a passage already permeated with the presence of God. They would teach me that schizophrenia can only be understood through the microscope or latest brain imaging technology. They would teach me that in all the thousands of studies which have been done, God has never once been seen racing between dopamine receptors.

Yes, they would say I am a heretic, because the psychiatric world-view is a materialist world-view, reifying neurobiology, reducing human experience to electro-chemical events, and rejecting the notion of God, leaving the only deity in the consulting room to be the psychiatrist himself! And they would be right. I am a heretic.

I am a heretic because I know something is terribly wrong when a person pours their pain out to a psychiatrist and the psychiatrist responds, "Looks like we need to tweak your serotonin." I am a heretic because I know something is terribly wrong when a person is angry and upset, and the first thing their casemanager says is, "Have you taken your medications today?" I am a heretic because I know recovery is about changing our lives, not our biochemistry.

When we believe we can explain the complexity of human experience through the study of neuronal activity, then we are committing a type of idolatry. We end up worshipping false gods. Of course, there can be a place for medications for some people in the recovery process. But I fear we can get so focused on mere chemistry, that we miss the true alchemy. We become so fascinated with the mechanics of neurotransmitters, that we miss the upsurge of human resilience, as people begin their recovery.

I refuse to worship in the cult of neuro-biology. Like those practitioners in person-centered medicine, I understand disease is a theoretical construct, through which physicians attempt to explain patient's problems (Stewart et al. 2003). The disease interpretation does not tell the whole story. The psychiatrist's disease abstraction, or pathography, can never tell the story of the human spirit's encounter with adversity. That is a story which can only be told by the survivor and witnessed by those who are willing to listen. The lived experience of distress and recovery tell the tale of the resilient self, the story of strength in vulnerability and how, for many of us, distress is hallowed ground upon which one meets God.

Distress, even the distress associated with psychosis, can be hallowed ground upon which one can meet God and receive spiritual teaching. When we set aside neurobiological reductionism, then it is conceivable that during the passage that is madness, during that passage of tomb becoming womb, those of us who are diagnosed can have authentic encounters with God. These spiritual teachings can help to guide and encourage the healing process that is recovery. Let me give you an example from my own experience.

I was in a very difficult, emotionally turbulent passage, punctuated with periods of psychosis. The anguish of it seemed endless, and I had lost all sense of time. I remember pressing my body against the concrete wall in the corridor of the mental institution as wave upon wave of tormenting voices washed over me. It felt like I was in a hurricane. In the midst of it, I heard a voice that was different from the tormenting voices. This voice was deeply calm and steady. It was the voice of God, and God said, "You are the flyer of the kite." And then the voice was gone.

Time passed and I kept repeating what I had heard, "I am the flyer of the kite." When I repeated this phrase, I had the image of a smaller me, standing deep down in the center of me. The smaller me held a ball of string attached to a kite. The kite flyer was looking up at the kite. To my surprise, the kite looked like me also. It whirled and snagged and dove and flung around in the wild winds. But all the while, the flyer of the kite held steady and still, looking up at the plunging and racing kite.

"I am the flyer of the kite", I repeated again. And, slowly, I began to understand the lesson. "I have always thought I was just the kite. But God says I am the flyer of the kite. So, even though the kite may dive and hurl about in the winds of pain and psychosis, I remain on the ground, because I am the flyer of the kite. I remain. I will be here when the winds roar, and I will be here when the winds are calm. I am here today, and I will be here tomorrow. There is a tomorrow, because I am more than the kite. I am the flyer of the kite."

The notes in my chart that day probably said I was floridly psychotic. However, for me, that day was an epiphany. The lesson I learned on that day was a lesson I relearned, over and over again, in my recovery. Basically, I learned there was a deeper part of me, that was centered and unmoving and steady and constant and calm. Without this deeper part of myself, the wind could easily blow me away. This deeper me learned not to over identify with the good times or the bad times.

Like the kite blasting around on a windy day, my recovery often meant having a difficult time, with lots of ups and downs, pain and suffering, setbacks and bad days. But God taught me there was more to me than these ups and downs. Deep down inside, no matter how rough things got, there was a still, quiet place within me that held steady and that survived. On some days, recovery, was just about learning to ride the tumultuous winds, while hanging tightly to the kite string, until the storm passed. At other times in my recovery, I needed my therapist or a trusted friend to hold the string, until I could reconnect with the flyer of the kite within me.

If mental health professionals are to support the spirituality of people in the recovery process, then it is important to remain open to the possibility that people receive authentic spiritual teachings during periods of what gets called psychosis or psychiatric disorder. These spiritual teachings can provide a resting place for the weary; nourishment for the hungry; meaning for those in despair and a compass for those who are trying to navigate the passage of recovery. Simply allowing a client to discuss the spiritual teaching, while listening respectfully, can be healing. If the client is willing, exploring the teaching, applying it to daily recovery, and reminding the client of the teaching when it's been forgotten can be helpful.

It is imperative that professionals not invalidate spiritual teachings received during psychosis or severe emotional distress. It is important not to dismiss such teachings as delusions. Do not interpret them as symptoms of disordered minds and then ask for an increase in psychotropic medications. If, as a mental health professional, you feel uncomfortable listening to spiritual teachings, because you are not an expert in such matters, own this personal limitation and share it respectfully with clients. Clients are then free to find other people who are more receptive to talking about spiritual teachings received during periods of altered consciousness and extreme emotional distress.

In addition, if mental health professionals are to develop an understanding of the role of spirituality in recovery from psychiatric disorders, they must be prepared to explore the depth and breadth of their own spirituality. It is not enough to study the spirituality of people diagnosed with psychiatric disorders, as if our spirituality were somehow different from yours. This objectifying, non-reflexive perspective will not do. If professionals are to support people in recovery, they must live in hope and understand no one is beyond hope. No one is completely lost. No one is chronic. All are of value. No one is a waste of your time. In other words, professionals must be willing to look into the places where human hands can not reach and abide in faith that there, too, God dwells. And that is not easy.

We live in a culture where professionals are trained to and rewarded for artfully disappearing disturbing people. Those people buried in the state hospital cemetery had been disappeared under numbered markers. In a similar way, professionals can feel pressured to disappear disturbing people beneath a diagnosis and to relate to diseases and disorders rather than people who are in deep pain. Professionals can feel tempted to disappear disturbing people through a mind-numbing array of psychiatric pharmaceuticals, which make us quiet, compliant and manageable, rather than to hear our rage and despair. Professionals can find it easier to disappear people by segregating us in programs, rather than inviting us to participate in the full cultural and economic life of the community. It can be easier to send us to the Salvation Army for Thanksgiving dinner, than to invite us into your homes and families.

Professionals must dare challenge the depth and breadth of their own spirituality by looking into the face of the person in pain and resisting the urge to disappear that person by referring them to another agency. Professionals must dare to be pierced by the unanswered cry for justice in the lives of people who have been sexually abused, physically battered, emotionally crushed, and resist the urge to disappear them by creating program rules that exclude such people and make the work easier.

Being willing to test the depth and breadth of your own spirituality means professionals must be willing to bear witness to human anguish and not drug it away. Professionals must do more than teach a person the skills needed to get up in the morning. They must also dare to help us address the deeper question: why get up at all? (Nerney 2004). Professionals must avoid pride and recognize they do not cure. Putting their own spirituality on the line means professionals must admit they are not God and do not direct the recovery process. It means professionals must surrender the privilege of presenting themselves as being above or beyond human distress, and must allow their own hearts to be torn asunder in love and compassion for those they seek to help.

In the early years of my recovery, I did not know that supporting people in their recovery meant I would have to gradually become willing to have my own heart torn asunder in love and compassion for them. I thought becoming a professional helper meant becoming very nearly perfect. I thought becoming a professional helper meant becoming strong, invincible, invulnerable and above all, utterly sane. Let me share a bit about that story with you.

Early on in my recovery, I experienced an important turning point. It occurred when I was eighteen years old. My psychiatrist told me I had chronic schizophrenia and I would never be well. He said I would be sick for the rest of my life and the best I could do was avoid stress and cope. Something in me fought back against his prognosis of doom. And as I stood outside his office, I remember rejecting the chronic mental patient life-plan and thinking, "I will become Dr. Deegan, and then I will change the mental health system so no ever gets hurt in it again." That became my survivor's mission. That became the project around which I organized my recovery.

My goal was not entirely altruistic. From my vantage point, at 18 years old, becoming a psychologist was attractive, in part because it meant I would be powerful and rich. And, even more importantly, I thought being a psychologist meant I would be certifiably sane. I really thought psychiatrists and psychologists were utterly sane and that by becoming a card-carrying member of that elite establishment, I would once and for all put psychosis behind me and never be a mental patient again. I really thought you had to be completely well in order to help other people. And so I figured I would become a doctor, and my job would be to help "them". However, in time, I learned my vocation was not to help them. Rather, I learned that I was one of them. My vocation was not to reach down, from some exalted and lofty place, to help the poor unfortunates. Rather, my vocation was to reach across and to share my hope for recovery with others, as they shared their hope with me.

Recovery did not mean becoming powerful, strong and invulnerable. Instead, my recovery has been marked by an ever-deepening acceptance of my vulnerability and of the God who is always walking with me. Walking into recovery has meant trusting that when my heart breaks open, yet again, God works through that wound to deepen my capacity to love. That's what it means to be a wounded healer.

I believe only the wounded healer is available to walk with people into the mystery that is recovery. And this is the great secret of the professions. I know you did not come to this work because the pay is fabulous and the prestige is irresistible. Frankly, there are easier ways to make a living than working in mental health. I believe most of you came to this work because something in you knows about being wounded. Somewhere in your life, you have encountered adversity, and you did not succumb. Somewhere in your life, you have been touched by suffering – either your own or that of others – and you have experienced that what, at first, seems like a tomb, has the potential to be transformed into a womb, from which something new can emerge.

We come to this work, not because we are strong, but because we have experienced our own weakness, our own vulnerability, and the cry that dwells in our own hearts. We come to this work because we are spiritually alive and know something of grace and healing, because we have lived it. We come to this work because we are wounded healers. This is the common ground of the humanity we share with people with disabilities.

Because we stand on the common ground of our shared humanity, we are all related. Ultimately, we are all knit together into one intricate fabric. The recovery of one ultimately depends on the recovery of all. It is not enough to speak of individual recovery. The exploration of spirituality in mental health recovery requires that we also surrender ourselves to the work of collective recovery and collective healing.

There are rends and tears in the fabric of our shared humanity. There are places where the inhuman and the inhumane have erupted into the human services; ripping the common ground from beneath our feet; rending the fabric that weaves us together; and dividing us into the human and the subhuman, the able and the disabled, the wanted and the unwanted, the eaters and the useless eaters, the saved and the damned, the whole and the unwhole, the worthy and the worthless; the well and the sick; the high functioning and the low functioning; the sane and the crazy; the providers and the consumers; the helpers and the helpless.

The tears in the fabric of humanity require recovery and healing. That is why we gathered on a bright autumn day, nearly five years after having discovered and blessed the abandoned cemetery at the state hospital in Danvers Massachusetts. Nearly two hundred of us stood in the field outside the now restored cemetery. We were consumers, psychiatric survivors and ex-patients, mental health officials, professionals, townsfolk, family members, clergy, government officials, former hospital employees, people from the media and even relatives of some of the people buried in the cemetery. We gathered together, on the common ground of the restored cemetery, to finally speak the names of the 678 people who had once been buried beneath numbers but now lay with dignity under proper headstones.

One by one, former patients of the hospital came before the hushed crowd and slowly read each and every name. Frank Lawrence. Clarissa A. King. Mary Leo. It took over an hour to read every name, but we did it. Gracie Josephine Withington. Carmine Pelosi. Lizzie Burns. Raffaelo Appesino. Ferdinand Filisse. Olaf Hokinson. John Wesolowski. Potop Ilchuk. William Pittsley. And as I sat there with my eyes closed, listening, it was as if each and every name became a bird, rising up on the breath, free at last, rising up and up into the blue sky to join the autumnal migrations. Mary Ann Swift. Araminta Harris. Frank Reo. Stillborn Baby Dornfield. Oliver B. Hobbs. Sarah Cox. A tear ran down my face as the names of those buried beneath numbers were now finally unburied and set free at last. The names remembered, spoken aloud, rising like birds, flocking, migrating, and then mingling with the names of so many others who had been similarly buried beneath numbers in other state hospital cemeteries across the United States.

You see, former patients all across the United States had begun to hear about what we were doing. Guided by the same spiritual wisdom, former patients in over 30 states had begun to look for the forgotten state hospital cemeteries in their states. We found 20,000 former patients disappeared beneath numbered markers and buried in racially segregated cemeteries at Central State Hospital in Georgia. Former patients blessed that resting place and raised an angel to watch over it so that it could never be disappeared again. And we found four thousand disappeared at New Mexico State Hospital. Fidel Lopez. R. Eguchi. Francis Thornton. Mary Romero Encinas. And at the historically, racially segregated hospitals at Crownsville, Maryland and Goldsboro, North Carolina we remembered the names of thousands, including Anna May Brouglon, Fannie Farmer, Bette Harrington and Walter Riley. In Hawaii, we remembered the names of Lau Do, Sang Chun, John Doe, James Doe and Frank Rivera. At the Hiawatha Asylum for Insane Indians in Canton, South Dakota, we remembered the names of Silas Hawk, Edith Standing Bear, Kay-Ge-Gay-Aush-Eak, Robert Brings Plenty, Long Time Owl Woman, Yells At Night, Enas-Pah and Baby Ruth Enas-Pah. At the state hospital in Topeka, Kansas, we remembered Franz Federick, Edward Petrowsky, Augustus Urban, and Sarah Jane White.

In August of 2000, a psychiatrist stood before 1200 mental health consumers and made a formal apology. His name was Thomas Hester, the medical director for mental health services in the state of Georgia. And as people wept, overcome with sadness, joy, relief, and justice, Dr. Hester said:

"I am here today to signal the beginning of making amends through two approaches. One is to humbly say to you that I am sorry. I am sorry on behalf of the State of Georgia. I am sorry on behalf of institutions who in the past, despite whatever intentions they may have had, have trampled human spirits, having not allowed recovery to flame. I'm sorry that we've over-used medications. I am sorry that we have over-used intrusive measures like restraint and seclusion. But in addition to a public apology, another part of recovery is going into action. Making amends is not enough. It is not enough just to admit the exact nature of your wrongs and apologize. And so today I am committing, on behalf of the State of George and the Facility (state hospital) System, to take...action." (Hester 2000)

Some people said to us, why are you wasting your time on the dead when there are so many issues that are oppressing the living? But we knew that the recovery of one depends on the healing of us all. We knew that working to heal the tears in the fabric of humanity was a deeply spiritual journey of collective recovery. We knew that tombs can become wombs from which something new can emerge.

In conclusion, understanding spirituality in mental health recovery must not be limited to the study of individuals. If we are willing to follow the Spirit of the inquiry, we will inevitably be lead to reflect on collective recovery and the healing of historical and contemporary injustices in mental health systems. The recovery of one depends on the recovery of all.

References

  • Hester, T. (2000). http://dsmc.info/apology.shtml
  • Nerney, T. (2004). Lost lives: Why we need a new approach to quality. Center for Self-Determination. http://www.centerforself-determination.com/
  • Stewart, M.S., Brown, J.B., Weston, W.W., McWhinney, I.R., McWilliam, C.L. & Freeman, T.R. (2003). Patient-Centered Medicine: Transforming the Clinical Method, (2cnd Edition). Radcliffe Medical Press, Ltd.