A talk to the Royal College of Psychiatrists Annual Conference - June 2007

Hello, as has been said, my name is Graham Morgan. I work with the Highland Users Group and have been asked to talk about recovery.

 

I have to apologise in advance because this talk may seem like going back in time to the sort of lectures I imagine you all had to sit through when you were learning the professions you work in now.

I hope it’s not too boring or patronising and that the repetition of a few basic points some years into your careers is, at least for a few of you, a timely reminder.

 

I have a host of memories about my life and I am going to spend a little time giving you a few excerpts from my story.

 

I am privileged to have spent a life amongst adventurous people who have encouraged me to do, what to me, are exciting and wonderful things.What can I tell you about?

 

I first met my wife on a trip across the Atlantic. She wandered up to our yacht looking for a berth on it just as the skipper and paying crew had decided to leave - eventually our much nicer and more exciting new crew was completed from the waifs and strays and travellers of Gibraltar’s dock side.

The crossing was a wonderful trip - all the classic bits are there:  the dolphins leaping in the bow wave of the glassy smooth green blue sea. Listening to Meirav late at night, when, apart from the red glow of the instruments all that could be seen was the wonder of the stars all around us and, as we slipped through the dark water, sipping our coffee and tending the sails, she would give us the Greek, Hebrew and Arabic stories and legends of the constellations above us - it is an abiding memory.

 

Then on another transatlantic trip  our engine broke down and we had no electricity, we had a ripped mainsail and there were only two of us to sail the yacht with no autopilot. We spent days in the Sargasso Sea drifting in circles while the Portuguese men of war tripped past us with their little jelly sails. All around us were pods of dolphins and whales and shrieking birds feeding on the plankton and jelly fish or whatever it is that they eat. At night it seemed there were as many stars below us as above us and the dolphins would streak towards us outlined in the bright bright phosphorescence. Later, on the same trip, a gale blew up and as the night clamped down on us and filled my stomach with disquiet we heard the huge explosions of great whales jumping out of the water and throwing themselves against the fronts of the waves. That same night I was woken by the skipper to see a whale much longer than our yacht swimming, outlined in phosphorescence within arms reach of us and, as I was tired to my core, I soon gave up watching and went back down below.

I could give you lots of sailing stories: sliding over coral reefs in the Philippines with the water so clear you feel that you can touch them, sailing down really narrow channels in Sweden when our wonderful skipper Charlotte (my sister-in-law) told us to watch out for gybing because we might hit the rocks besides us with our boom.

 

Then there is sitting in the desert on the South Morocco  coast stitching our tent up next to two soldiers and their camels whose nets have been ruined in the same sand storm we have just spent the night not sleeping through.

 

What else is there?

Climbing Mount Kinabalu with my son, my breath wheezing out of me, the sun shining on the rainforest and the glittering coast below.

 

The slip of skis as we slide through the snow in Glenmore Forest and feel lost in magic. Walking in the hills, sitting by streams and rivers listening to my son and his cousin invent Viking runes on a stay in the Orkneys. Becoming a welcome part of Kate's huge family, spending every summer holiday wandering along the north coast of Sutherland. Looking at the northern lights with cold tingling awe whilst my son, who we had woken up to look at them, stares at the concrete and asks when he can go to bed.

 

And as I mention it, that is another part of me - a father and a husband. How does anyone describe something like that? To have someone who wishes to touch and hold you, to be able to talk and natter and be silly and be yourself with no thought of how you have to present yourself to the world. Someone you come home to in the evenings and where so much is known about each other that you fit together as naturally as if you were born together. To have a son who so recently would walk around holding my hand and is now as big as me, busy growing, learning, finding out about life but still able to tease us and enjoy life with the family in between the teenage grunts and embarrassment at admitting he really has parents.

 

What else?

A life in a few sentences: My work - well I work with Emma, Karen and Debbie as well as our HUG members. We are a friendly, passionate team. We look out for each other and treasure our comradeship and friendship, our skills and our vision. We work, like you all do, with people whose lives are frequently blighted by tragedy but who, with us, want to make the world a better place. We work to find out peoples views, to lobby, to inspire, to motivate, to grow beyond the sadness of everyday life, to really really change the world. My work is all consuming and breathes energy into me – I sit in dingy hallways on the west coast to find out a member's experience. I drift through committee meetings where the desperation of our members seems to have been lost behind the committee papers and agendas of immovable systems;  I tell my story to all sorts of people; I meet with the great and the good and I come to conferences such as this. My work is varied and vibrant, a kaleidoscope of different people and activities but, above all, it is somewhere where we all know that we are making a difference.

And at last, of course, there is me as illness and impairment, the sweet sting of razorblades to express and release the inexpressible, the tears and the loneliness and the closed grey heart lost in ashes a million miles from the brightness of everyday life.

 

The 1000 milligrams of largactil in between mugs of haloperidol to chase away the spirits that have taken over my brain and altered my thoughts and poisoned my blood. The sluggish ooze of chemicals just waiting to be replaced by the apathy of a world clouded in thin light and coffee after coffee with the sparks lost before they even surface.

 

There is walking to the light for salvation and only getting blisters! There is fasting for purity and only getting hungry! There is the battle between good and evil and only getting sectioned and there is the dull release of getting drunk every night so that you don’t have to think and be present and live the life that has lost its way. There is the olanzapine and the weight gain and the harsh thought that life will never change, that despite the brightness, I will never be really real, never join in with what everyone else takes for granted. There is the devastation of having schizophrenia and being always on the edge of illness, always struggling to keep the veneer of normality and sociability there, fearful and at the same time wishing to be free to be really me - whatever that distant person may be.

Well that’s me - husband, father, traveller, worker, schizophrenic and, I know the point is laboured, but what do you see when I walk into your surgery?

 

It is all about illness and the negative, it is about the stuff we can’t do, the stuff that damages us, the stuff we are frightened of - it is all about our failings. I have almost never talked about all the other me’s with a mental health worker - the successful me, the loving me, the inspiring me or even the silly, daft, disorganised me.

 

My first point is if you only hear about and see impairment then it is so easy for us to conform to and live by that definition. We are almost literally moths circling the bright flame of the system which burns away our will to a new future. We tuck away expectation and hope and become the mentally ill - the discarded and the excluded and the incapable.

 

When you see me in your surgery, it is important to think of the messages we give to people and we can’t do that by just concentrating on our symptoms and misery. We need to move beyond this, we need to look at all the other aspects of our existence and the tiny hopes and desires and things that all add up to make us whole and vibrant. We need a shift in focus away from what is wrong with us to what it is that gives us hope and the wish to grow and learn and engage with life again.

 

Now that must be such an out dated message. You must have heard from people time and again about the need to look at us in the whole, to move away from treatment that only looks at the negative and the sad and to build on the positive.

 

You must get fed up with people who say: “why are the psychiatrists at the centre of all this?", “Why do we gather around in the waiting rooms waiting for their comfort and their wisdom and their drugs when really it is us, the users who need to be at the centre?" It is after all, our lives and our destinies and if all we see is darkness then life can become bleak indeed. So yes, we need a system that moves away from maintenance and expectation set at the negative, into a system that celebrates all those things that we are good at - all those things that can bring pleasure into ours and the lives of those around us.

 

It's just like the treatment of people with cancer – even I remember when it was taboo – it was a resounding blow at all that we hold dear. When you saw only the worst, where you stopped talking to people with it, where people gave up - but all that changed years ago in that field. But that’s where some of us are with mental illness today. We get the diagnosis and that is the end, instead of a chance of a new way of living and viewing life.

 

Well my next point is a denial of what I said before. It's so easy to say that the system has failed us. That the professionals, of whatever sort, have a poverty of imagination that holds us in some sort of hopeless stasis, some stagnant backwater, that our helpers and society reinforce with their definitions and expectations.

 

I would say that if it’s recovery we are looking at then we need to truly shift the focus.

I have a little story for you. I spoke at this conference a year ago and after my talk one of your consultants came up to me and said that having seen me speak a couple of times she doubted the validity of my diagnosis, and a few weeks later one your organisers asked me to speak about my journey to recovery at this conference - which is what I am doing.

 

I found this request and this diagnosis confusing in the extreme because I didn’t really see myself as recovered. In fact I didn’t know much about the idea at all.

 

But that person who said you’re well, that person who said you are not schizophrenic, had a huge effect. We talk about the ‘recovery journey’, the steps we take to a new and more vibrant life but, for me, I think we can make it even simpler  - recovery for me personally is a matter of perception and definition which I, not my helpers, need to define and live.

 

I gave a series of versions of my life earlier, for many years the biggest influence, the biggest bit that made up who I am, was Graham the schizophrenic. Nowadays, since your rather indelicate push from the last conference, I dare to think of Graham the father, the worker, the husband, the friend, the writer. A host of definitions divorced from the sad world of illness. It’s just a bit of spin but it fundamentally alters how you view yourself. So not really new, but recovery needs to be based in and come from us the users - you can’t do recovery to us we need to seize it and live it ourselves.

Getting away from the blunt ideas, I suppose it would be good to reflect on what has really led to my recovery. You as professionals are my toolbox for wellness - it has been good having the input of psychiatrists, psychologists and community psychiatric nurses over the years. Usually their input has been respectful and compassionate, they have helped me with crises and doubts and acceptance and provided a bedrock for the times of desperation and they have given me medication which, much as I detest it, seems to keep me sane, even if at one remove.

 

But you are not, and should not be, any more than the mechanics of the smooth running of my mind. When a car has been mended the mechanic doesn’t get in it and drive it away - the owner does and that is what so many of us struggle with. With our lives we can grow to expect other people to tell us what to do. I certainly have on occasion, it is tempting to be helpless, to smile bleakly and say what should I do? I’m lost and need guided along the way. Sometimes the need for a chauffeur in our life is overpowering which must be so frustrating for those who never trained for that position in the first place.

 

My guides have been really simple and they are things we all take for granted and which so many users don’t have or don’t realise they have.

 

For me purpose is essential. When I first cracked up over 20 years ago, it was a mixture of a spiritual crisis, the angst of youth and plain old loneliness. To help other people became my new cause, my mission and my vision and my occupation that took me away from the comfort of a soft bed and the patterns that consistently fail to enliven the ceiling above you.

 

Occupation, activity, getting involved in something that makes me feel useful and needed and valued. These are basic building blocks. They take away that feeling of discarded inadequacy that a life of greyness can conjure up.

 

For me love is a huge thing, it transforms, it fills me with warmth and energy and optimism. I can so clearly remember the first few years after I met Kate - it just changed my outlook on life. Before, I saw the negative in everything - I chose to scowl rather than smile, I chose to criticise rather than celebrate. At its most basic, is that before I fell in love I tended to stare fixedly at the pavement when out and about and after entering this rosy world I looked forward to meeting the gaze of fellow passers by and happily smiled at them. To have love and companionship is something that so many of us miss and yet if we get it can make life glow with colour.

 

I have spent enough years on benefits to know what a struggle that can be but for most of my life I have not had to struggle for money – I eat organically, I don’t worry about the rent or the tax for the car or the phone bill. I go on holiday often, where I can relax and recharge and glow in the warmth of an open restaurant by the soft waves of the sea. I have lost grasp of how harsh life can be when you struggle with relative basics which everyone else takes for granted. Of course most of our members have to, at the very least, be cautious with their budgets.

 

I have a job which I love to do. It’s not everyone who gets to meet people like the Queen or the Minister for Health just for speaking out about their life and the lives of their friends. I have a team of people that I cannot describe adequately. They are a joy to be with. I look forward every day to coming into the office where I know I will meet people as passionate and committed as I am. People filled with a burning sense of justice and a great comforting sense of shared humanity. And of course it is not just workers - it is our members. You, who do literally life saving work, must know the pleasure a compliment brings.  For us, though we don’t save lives, we are routinely thanked and praised in our work and that makes a big difference.

 

And lastly my son - it is still only just occurring to me 15 years too late how hugely important it is when we bring life into the world. I would love to say how well I have brought him up but I would put most of that down to Kate. Looking at him now seeing someone who has overcome a lot, growing in confidence and really engaging in life in a way that I have never really known how to, fills me with pleasure.

 

These are such simple things but they are the things that make life liveable or not and I am privileged to have had them all. It is no wonder that I am generally well rather than generally ill.

 

And that is my final message to you. It is easy to get someone like me up here to talk and glow about the recovery journey. I have almost everything I need and must almost be the model patient.  Everything falls into place for me and I have enough resilience to combat the undercurrent of thoughts and ideas I would rather not talk about or bring myself to acknowledge even when life is as rosy as it is right now.

 

The point of recovery is about those of us who don’t have rosy lives, who struggle everyday and see hope and joy as tinsel that was long since discarded. When these people, of which there are so many, walk into your consulting room it may be offensive to get them to see their lives in a more positive light, it may create a well of anger to ask them to view their lives differently, it may be incongruous to ask them to define themselves in new ways and it may cause huge upset to ask them to look again at what makes life bearable because when you have no value and nothing to do and nothing to look forward to and when love and friendship is an alien almost forgotten feeling you can know in your heart that we can ask too much of people.

 

That doesn’t mean we stop trying but it does mean that we enter peoples own worlds and help them define their lives and give it the meaning that is as unique to them as it is to us. It means we look at the basics and, if people wish, help them find a journey that suits them. That journey may have nothing to do with middle class attributes of success and the changes they wish to make may have nothing to do with the vision of their helpers - that is the beauty of recovery. It is based in our world and around our community and is rooted in our values and our own personal interpretation of our lives. Give us the driving seat, let us choose the car and the road we travel but, as our assistants, help us to keep our car, however rickety it is, well maintained, with garages in sight for those times when it will inevitably break down.    

  

Graham Morgan

Highland Users Group