One In a Million...
Having spent 13 years in and out of the psychiatric system, Ron’s own route to recovery has given him many insights into the difficult issues facing today’s mental health services.
Ron Coleman was been active in the field of mental health since 1991. When undergoing his ow recovery from mental illness, Ron used his experiences to develop his ideas for recovery-centred treatment of others. Since then, he has gone on to write numerous books and papers on the subject, he was influential in the development of the Hearing Voices Network in the UK and was the first national co-ordinator.
He worked with his wife Karen under the banner of Working to Recovery for many years, but has stepped back from these duties in recent times due to heart problems and cognitive memory issues and his focus on growing Deepness Dementia Media, a not for profit organisation that provides a space for people living with dementia to come together. He has made a new life writing poetry and plays-one of which has already been performed. You can find out more about the projects at Deepness Dementia Media.
I was brought up in a working class Roman Catholic family and like many boys my age I went through my religious phase in my eleventh year of life. I went to see our parish priest and told him that I wanted to become a priest. Our parish priest at this time was getting on in years and was one of the old school having said more masses in Latin than in English. He was also without doubt a man of God who saw himself as a shepherd and us as his flock. When one among his flock stated they wanted to become a priest, he took them seriously. He took my desire to become a priest seriously and once a week I met with him and two other boys who had also stated a desire to enter the priesthood. In these weekly meeting we would discuss further the teachings of the church, the role of the priest and whether we thought our calling to the priesthood was real. After one such discussion one of the boys stopped coming as he felt he was not being called but was trying to please his family. The two of us that remained were undeterred and continued on with our instruction, fully committed to the idea that some day we would become priests.
These were happy days for me, I was preparing to serve God and I had all the enthusiasm an eleven-year old could muster for my coming tasks. The day that changed my life started the same as any other I went to school and after school I headed for the chapel house for instruction. The housekeeper answered the door, she was near to tears as she told us our parish priest had taken seriously ill earlier in the day, although he survived he was never to return to the parish. (I often wonder what would have happened had he never became ill. Would I now be a priest?) Shortly after this happened a new parish priest arrived, (I will call him Adrian) at first everything was business as usual and I soon relaxed into my normal routine. The next three months went by without incident as far as I was concerned though I noticed that a lot of the altar boys were leaving service before they normally would age wise.
I was very quickly to find the reason why when after Mass one day Father Adrian asked me to come and see him in the vestry, I sauntered over without any thought as to why he wanted to see me after all he was a priest. When I arrived at the vestry Father Adrian asked me to sit down it was at this point that things started to change. He started by asking me if I had any sins that I needed to confess, when I said I did not he called me a liar and said that he needed to pray for me so that I would be forgiven. He knelt beside me and started praying aloud he was saying something about me leading him into sin and that I was evil. As he continued to pray he started moaning and groaning, I was aware that his hand was slowly moving up my leg this went on until he was touching my penis. As this continued I was aware of becoming a spectator in what was happening to me. I became aware of other things around me like the candles that were burning too brightly and his purple vestments were if anything even more purple than usual. I was there but not there those who have been abused will know what I mean, much later in my life I discovered that this is called dissociation and it is the most common form of self-preservation of those who are abused. At the time it did not feel much of a defence to me for inside I screamed at him to stop I also screamed at God for protection but either God was deaf or I never screamed loud enough because he never defended me. When it was over Adrian told me that no one would believe me if I told them what had happened. I left the vestry in a daze and never told anyone what happened that day or the many other days that it was to continue for.
I was trapped for a while within this cycle of abuse, after all who would believe me? Adrian was a priest he stood between people and God, he represented Christ on the earth, the forgiver of sins, the good shepherd. I was an eleven-year old boy, a dreamer and to say anything would brand me a liar. My relationship with this God that I thought I believed in was over. The abuse continued for a few months until I found from somewhere the strength to turn my back fully on the church and with it God. My spiritual and religious phase was over. Time has taught me that this is the pattern with abusers that they are often in positions of trust in the community and they use this position to ply their evil trade in misery and pain. Experience has taught me that the failure to deal with abuse means that the abuse will stay with you throughout your life and in many ways shape your life in terms of future relationships. This is especially true when it comes to trusting friends or life partners. This event more than any other was to shape my life or should I say illness.
If this was the only traumatic life event that I was to go through I believe that I would have survived it and got on and led a fairly normal life. As is often the case it was when I thought that I had turned a corner that life dealt me its foulest hand. As I grew up into adulthood I put the abuse behind me or so I thought and got on with the business of living, it was while I was getting on with life that I met Annabelle. I met her one Saturday night in the pub after I had been playing rugby, when I saw her I knew what love at first sight meant. Being psychotic has nothing on being in love, love is without question the true psychotic experience. Annabelle was an artist, sculpture was her main medium though also she painted and did sketching. In the short time that we were together she taught me many things, she taught me what love was, how to make love and most importantly how to love life. She also taught me to appreciate the arts such as classical music, opera and theatre. With her I began to discover a spiritual dimension to my life though I hasten to add that this was not a religious thing.
Our relationship developed quickly from the torrid passion of new lovers to the passion that consumes those who are indeed soul mates. We spent as much time as we could in each others company often we would sit up through the night talking and planning as couples do. We were planning our life together, this was normality at its best. But like all normality madness was lurking waiting its chance to pounce and consume us and then one day it did.
Like the day I met Annabelle the day our relationship ended was a Saturday, I had been playing rugby and went home with something for both of us to eat. When I got in I called to Annabelle asking her if she wanted tea or coffee, she didn’t reply. I went into the living room and she was lying on the couch I asked her again and still got no reply I gave her a shake but she would not wake up. I rushed out of the house to a neighbour and asked them to phone an ambulance. They rushed her to hospital and put her on a life support machine she did not make it and three days later she was pronounced dead. Annabelle had taken her own life I never really found out why but I know that I blamed myself, I don’t know why I blamed myself though it was to be many years before I stopped doing so.
When she died a large slice of me died also, I swore that never again would I get emotionally involved with anyone. Like many others I suppressed all of my emotions about Annabelle and her death. I continued on with a semblance of existence that others called life. Like the abuse I choose to pretend it never happened and like the abuse my feelings of grief and loss and hatred of the world festered inside growing and growing waiting for their chance to devour me.
The time came for my emotions to overcome me when I had an accident on the rugby pitch that put me out of the game forever. Barely weeks had passed since I was discharged from hospital (still on crutches) when I heard a voice for the first time. I was in my office waiting for the computer to deliver the results of some data I had inputted when a voice behind me said that I had done it wrong. I looked behind me but there was nobody there. I stopped what I was doing immediately, went to the pub and got drunk, I remember thinking that I was stressed and needed a break.
Within a short six months period the voice had been joined by other voices that spent most of the day screaming at me. I could not focus on my work and the only relief I got was when I had drunk myself into oblivion. Eventually my boss told me I had four weeks to get my act together. Four weeks later I was out of work, losing my home and on my way (though I didn’t know it then) to my first encounter with the psychiatric services. In double quick time I became a pitiful sight with an unkempt beard, more often than not dirty clothes and more and more frequently drunk rather than sober.
Eventually I could not take any more and I phoned the Samaritans and after much talking went to see my GP. He ended the consultation with the words “I am going to arrange for you to see a specialist” fine I thought that will take a while, what a surprise I was in for. He took me out of his consulting room and asked me to wait in a small side room in the surgery a few minutes later he returned with a nurse who he told me was going to look after me while he arranged an appointment with the specialist. The only thing I remember about that wait with the nurse was how little she spoke it was as if she was frightened to be in the same room as me.
My short wait ended some three hours later when the GP returned with another man it turned out that this man was the specialist that the GP had contacted. The specialist introduced himself and told me that he was a psychiatrist and that he had come to see me since my GP was concerned about me. It was here that I went through my very first one-hour present state examination, after the interview the psychiatrist told me I was ill and it would be better if I came into hospital for a short time. I told him where to shove his hospital and fled the surgery, three days later I was dragged into the Royal Free hospital where I once again was subjected to the psychiatric interview with the conclusion that I was suffering from schizophrenia.
The psychiatrist there told me that if I took medication then my voices and other symptoms would be eradicated and I would get better. He told me that the medication took about two weeks to work and in no time at all I would be back to something like my old self, he was wrong. Two weeks went by and if anything I was worse not better so I stopped taking the medication and decided to leave. This was when I discovered the real power of the system I was put on a section two of the mental health act, which held me for up to twenty-eight days against my will. A section three this is a treatment order, which allowed them not only to detain me but also to medicate me forcibly if necessary, followed the section two in quick time. This became my new way of life a constant round of illness with short periods of respite (not wellness) in the community.
Over the next ten years I was to spend six of them as an in-patient almost all of them on a section three. In this time I had nearly forty sessions of ECT, tried nearly every neuroleptic on the market and was denied psychological interventions on numerous occasions. Despite the most vigorous of treatment regimes the voices I heard remained as virulent as ever, medication gave me no respite and eventually the volume of medication I was taking was so high that I became little better than a zombie who viewed life through a legalised drug induced smog.
The system did teach me things the main one being how to be a good schizophrenic, I do believe that we learn much about how to be mentally ill in the system. Ten years were to pass before I found a way out the system by then they (the system) had created a perfect schizophrenic. Now on to recovery.
The stepping stones to recovery
Any recovery journey has a beginning, and for me the beginning was my meeting with Lindsay Cooke my support worker, it was her who encouraged me to go to the hearing voices self-help group in Manchester at the start of 1991. It was her not me who believed that a self-help group would benefit me. It was her who saw beneath my madness and into my potential, it was her faith in me that kick started my recovery and it is to her that I owe an enormous debt.
There are other essentials required for a journey to be successful; one of these is the ability to be able to navigate to your desired destination. In this I was fortunate not to have one navigator but many. In this section I will mention only five of them. The first is Anne Walton a fellow voice hearer who at my very first hearing voices group asked me if I heard voices and when I replied that I did told me that they were real. It does not sound much but that one sentence has been a compass for me showing me the direction I needed to travel and underpinning my belief in the recovery process.
The second is Mike Grierson; Mike was the person who navigated me through my first contact both with my voices and with society. He encouraged me to go out and socialise with people who had nothing to do the psychiatric system. He also took me to places like the cinema and classical concerts which reawakened my love for the arts. Mike was not only my social navigator he was also one of the people who helped me to focus on my voices in a way that allowed me to explore my experience.
The third and fourth are Terry McLaughlin and Julie Downs, Terry and Julie were my navigators back to normality, they rekindled my interest in politics and took me into their family without reservation. It was with Terry that I developed much of my early thinking around training and mental health. With Julie i developed training packages and now with my wife Karen I am continuing to develop training packages, which we use to explore the world of mental health.
My fifth person is Paul Baker another of my navigators on the road to recovery, Paul who brought the hearing voices network to the United Kingdom encouraged me to become involved in the network, then when the time was right handed over the development of voices groups to me. To all of my navigators Anne, Mike, Terry, Julie and Paul I owe my sanity.
Navigators require a map or a plan from which to navigate, and I have been fortunate for the people who were my map makers, were Patsy Hage, Marius Romme and Sandra Escher. I do not believe that these three fully understand what they have done. Little did Patsy know when she read the book by Julian Jaynes that the questions this would make her ask were going to affect so many people indeed It is because of her questions that the hearing voices network and resonance and other networks throughout the world exist today. Whether she wants it or not she has a premier place in the history of the hearing voices movement.
Sandra Escher is without doubt the person who made sure that ordinary people could understand the maps that were being made. Her ability to put across the message in language that is accessible to everyone has meant that their work has not remained in the world of academia but has been used by voice hearers from the very beginning. Sandra and Patsy have played a very important part in my recovery.
The final map maker is Marius Romme, Marius who in his own words is a traditional psychiatrist, is without doubt one of the greatest map makers who it has been my good fortune to know. When he listened to Patsy Hage and explored what she was saying it was then in my opinion he stopped being a traditional psychiatrist. When he asserted in public for the first time that hearing voices was a normal experience and that voice hearing was not to be feared he stopped being a traditional psychiatrist. When he continued his work despite being ridiculed and criticised by his peers he stopped being a traditional psychiatrist and in my opinion became a great psychiatrist.
To Patsy Sandra and Marius I only owe one thing and that is my life.
Up to this point I have mentioned nine people who have been participants in one way or another in my recovery journey and therein lies the first stepping stone to recovery; people.
If I were to name all the people who have played a part in my recovery the list would be massive. The other thing about this list would be the fact that the majority on it would not be professionals. One of my fundamental beliefs about recovery is the premise that recovery cannot and does not happen in isolation. Nor can it happen if all our relationships are based on a professional and client interaction. Recovery is by definition wholeness and no one can be whole if they are isolated from the society, in which they live and work.
For many years I had argued that there is no such thing as mental illness this has lead me into some interesting debates with people over the last few years. One of these debates was with Marius Romme, during this discussion it became clear, that Marius was not arguing a case for biological illness, what he in fact was saying was that illness could be expressed as a persons inability to function in society. This I can accept as it means that recovery is no longer a gift from doctors but the responsibility of us all.
This raises the question of whether society is prepared to take any kind of responsibility for the recovery of people with mental health problems. I am of the opinion that they will not, for in our sophisticated culture we too have bought into the notion of a biological explanation for mental health. I suppose that my expectations of society might appear to be to high, but that must be seen in the context of those societies that do accept responsibility for those amongst them who become mad.
For Example in the Aboriginal Culture when someone goes mad the whole tribe comes together to discuss what the tribe has done to cause the person to be mad. Can you imagine this happening in our cultures? I think not. When someone goes mad in our culture it is off to hospital with them. It is not a gathering of the local community that gets together to decide what is wrong with the community. It is a ward round made up of so called experts who get together often without the person concerned being present who decide both what is wrong with the client and how it will be treated. This scenario, alas all to familiar, does not hold out much chance of recovery for the client. It is an impersonal rather than a person centred way of approaching the problem. Within this scenario recovery is objective not subjective and the person is no longer a real factor in the process.
If people are the building bricks of recovery then the cornerstone must be self. I believe without reservation that the biggest hurdle we face on our journey to recovery is ourselves. Recovery requires self-confidence, self-esteem, self-awareness and self-acceptance without this recovery is not just impossible it is not worth it.
We must become confident in our own abilities to change our lives; we must give up being reliant on others doing everything for us. We need to start doing these things for ourselves. We must have the confidence to give up being ill so that we can start being recovered. We must work at raising our self esteem by becoming citizens within our own communities despite our communities if need be. We are valued members of our societies and we must recognise our value. We need to recognise our own faults the system may have created our diagnoses, but often it is ourselves who reinforce it. We need to be aware of our learned behaviour, this should be part of our old lives. We need to change those behaviours that still trap us in our roles as patients. We need to accept and be proud of who and what we are, I can honestly say my name is Ron Coleman and I am psychotic and proud. This is not a flippant statement, this is a statement of fact.
I am convinced that when we grow confident about who and what we are; we can then be confident about who and what we might become. For me these four selfs; self-confidence, self-esteem, self-awareness and self-acceptance are the second stepping stone on the road to recovery.
The third step is closely related to the second and it is rooted in our own status. I believe that we ourselves have a great deal of say in our own status. We can choose to remain victims of the system, we can choose to continue to feel sorry for ourselves, we can choose to remain the poor little ill person who requires twenty-four hour care from professionals. On the other-hand we can choose a different direction, we can choose to stop being victims and become victors, we can choose to stop feeling sorry for ourselves and start living again, we can choose to stop being the poor little ill person and start the journey of recovery. This for me is the third stepping stone choice. When we thought of ourselves as ill it was easy to let others make our choices. The recovery road however demands that we not only make our own choices but that we take responsibility for all our choices good and bad. As we make choices we will make mistakes, We must learn to see the difference between making a mistake and having a relapse. For it is the easy option to go running back to the psychiatric system when we make mistakes. Rather than face our own weaknesses we fall into the trap of blaming our biology rather than our humanity. If people are the building blocks of recovery and self is the cornerstone then choice is the mortar that holds the bricks together. There is one other stepping stone in the recovery process and that is ownership. Ownership is the key to recovery, we must learn to own our experiences whatever they are. Doctors cannot own our experiences, psychologists cannot own our experiences, nurses, social workers support workers, occupational therapists, psychotherapists, carers, and friends. Even our lovers cannot own our experiences. We must own our experiences. For it is only through owning the experience of madness can we own the recovery from madness.
The journey through madness is essentially an individual one, we can only share part of that journey with others, most of the journey is ours and ours alone. It is within ourselves that we will find the tools, strength and skills that we require to complete this journey for it is within ourselves that the journey itself takes place.
Recovery has become an alien concept, yet nothing I have talked about so far is based on rocket science, rather it is based on common sense, it is not anything new, it is merely a reiteration of a holistic view of life. We need to realise that sometimes we, all of us make things much more difficult than they need to be. It is almost as if we need life to be a rocket science that we can never understand. We seem to spend much of our time making the complexities of living even more complex through our appliance of scientific objectivity rather than exploring our lives through the simple mechanism of personal subjectivity. The time has come to have a close encounter with an alien concept it is time for recovery.