Making it Real.

BRITISH ASSOCIATION OF COUNSELLING AND PSYCHOTHERAPY

2012 – GLASGOW

Making it Real.

Hello

Thank you for asking me to speak today.

I have been asked to talk about my experience as someone with long term mental health problems, about my work with the organisation called HUG, about what people like me want from people like you and above all to make it real.

And I have around 25 minutes or so to do this in - which is either a very short time or an extremely long time - I can’t decide.

How do I make it real I wonder? You will all spend your days working with people like me so surely it can’t get more real than that? And yet I am speaking out of any therapeutic context so maybe you can hear from me in a different light - in a different relationship and without the need to check your judgement or temper your thoughts and comments.

I think by real - we probably mean lets remind ourselves why your work is so important - let’s remember why we got into it in the first place and see if we can regain the enthusiasm that inevitably settles as time goes on or maybe it is feeling; “Yes of course it is good what we do - we knew it all along and it’s nice to have it confirmed.”

A wee pep talk perhaps?! Well the pep talk goes like this : I work with HUG which is a group of 470 people with a mental illness and we are always saying we need talking treatments - we need counselling - we need psychotherapy. So you’re needed - don’t worry about it – if ever you do! But of course that is a bit silly. Some of us in HUG know the different forms of counselling and psychotherapy very well, many of us have gained directly from it and some less so.

But most of us are slightly more vague. I think you could distil what we say into the matter of fact plea that we want to be listened to, we want

to make sense of our story, we want to have ourselves and our sadness recognised and out of that recognition maybe we will regain dignity and self worth and the capacity to move into a better place in our thoughts and lives.

Some of us hate psychiatrists, some of us hate social workers, some of us even hate counsellors but equally many of us have found the intervention and support of the professionals involved in mental health as life changing and sometimes life saving.

I have not come today to demonise anyone or anything and although I am not sure yet what I am going to say, I doubt that I am going to try to give any hard and fast answers or messages for you to take away and treasure.

I am going to talk about my experience and I will make certain personal conclusions.

But when we tell our stories, what stories do we tell and how real are they?

My past changes with every shift in my value base and fluctuating recollection of my history and my perception of my present. My interpretation of my life grows all the time and changes constantly and out of my interpretation of a fluctuating past and an uncertain future comes a way of making sense of and living in my present life that will already be different in 20 minutes when I have told you something of myself and seen your reactions.

Let’s get the labels out of the way. I have a diagnosis of paranoid schizophrenia, of anxiety, of depression and of alcohol abuse. Many years ago I was told I had a personality disorder but as far as I know I no longer have that diagnosis.

I give different stories at different times and with different people.

At the moment when I sit in the room with my psychologist I talk about the past, I talk about my perception of abuse and loneliness and uncertainty and he listens and sometimes I have a huge urge to talk and talk but I rarely do. At the moment we are trying to move beyond the intellectual understanding of seeing that people with experiences like mine commonly harm themselves and see themselves in negative ways to finding an emotional bridge to feelings that I cannot have or maybe do not acknowledge.

Sometimes I watch myself watching him and feel impressed at how he helps me speak and also how he helps me not to speak sometimes.

Sometimes when I am feeling especially sad I sit in his room and sense clouds of evil rising from me and wonder how people like him who hear our stories keep healthy and don’t bow low with the burden of the procession of our stories of misery.

My CPN visits every 2 weeks. I always make her a coffee and I always wonder if she is being polite in accepting it. We talk of everything, we can natter about friendships and work, of the need to take holidays. We can talk about finances and how much I drink. We can develop wrap plans and muse over my compulsory community treatment order.

I find that she draws me out – I find that I tell her things I would not tell even my closest friends and this gives me a sense of security. I find that I look forward to her visits. It is strange the wee gestures we make to keep our boundaries solid, I choose not to comment when she surreptitiously looks at her watch, sometimes when I feel that session was really good I am tempted to give her a quick hug as I would a friend as she walks out the door and have to remind myself that this is inappropriate. Sometimes I meet her at the café when I am with my friends and feel thankful that we have agreed that I would be offended if she felt she couldn’t acknowledge me in public.

I see my mental health officer every so often; one of my closest friends spent a number of weeks sailing the Mediterranean with him and yet he is the person that confirms the need to section me. It is strange seeing someone in one context and knowing that one day we may share the same dinner table with mutual friends. It is strange meeting a person who is open to risk and freedom who chooses not to let me take such risks and it is strange to find that I probably agree with his decisions.

I see my psychiatrist and whilst I have a great deal of respect for him and sometimes when we have been waiting in corridors together for care program approach reviews we have shared jokes and been a wee bit silly there is also a gravity in our relationship. He holds my freedom in his hands and the decisions about what sorts of medication he will make me take so maybe, maybe that is fair and good.

As I tell you my story I imagine you are developing opinions and ideas about me and I do labour these points so much but it is important to me. Just as you gain a vision of me through what I talk about so do I gain an identity based on how I tell my story and how I choose to define myself.

So let’s give a few more versions of me.

Well there was 25 years of partnership, of turbulent dramatic love, ultimately mutually destructive but 25 years spent with another person sharing their hopes, fears, making meals for each other, walking up mountains and skiing through forests, chopping wood and getting moaned at for not being an enthusiastic gardener but delighted to share in the credit as the trees blossomed and the lupins flowered and the herbs and shrubs burst into greenery.

There is 19 years of fatherhood, a fatherhood which now is lost but at the time was filled with love and incredulity that I could have such an amazing son.

Another version. I live alone now yet I am surrounded by friends. At least once a week I will babysit a three year old and a nine year old and walk home late at night full of the most wonderful feelings. On Saturdays I visit the café where adults and children and dogs mill around and chatter and create chaos and I will sit and smile and bask in pleasure.

I am a manager, sometimes the people I manage doubt it but theoretically I manage four absolutely fantastic workers, four people bursting with opinions and vigour and emotion and ideas. They make it very easy and often I find it best just to sit back and watch them create their magic.

I have an MBE, I don’t really know what I did to earn it but I’ve got it. When I first got it, it made me giggle a lot. My story of how I forgot to walk away backwards from the Queen when she gave it me always gets people laughing or at least I think it does.

I have no sense of grammar or ability to edit but I have written a book about my life and about beaches and music and fish. I’m also a poet. I have bundles of poems that I tend to think are amazing for the first wee while until I rediscover them six months later but they tend to go down well when I give readings.

I used to be a yacht skipper. I have sailed in the Far East and over the Atlantic and across the Mediterranean. I have sailed through gales and been next to whales. I have watched the sun set below the horizon and the moon make a path through the sea.

I am many things, unfortunately people like you tend to hear my interpretation of my story when it is based on impairment and sadness. I am very good at telling my CPN about how much I would like to die and not very good at describing my joy at sitting on the harbour wall watching the sea turn golden and the birds and dolphins just off shore. I am superb at telling my psychologist that my belief in being evil is not a belief but a fact but not very good at talking about the joy I get when I walk Splash the dog along the beach.

Making it real. Well I know that it is the sort of conversation you have late at night after too much wine but reality is dependant on how you see it, how you are told it, how you choose to define yourself and how those around you choose to define you in turn.

I am tempted here to labour the point and to spend the rest of my talk talking about my life as a service user by talking of a typical day. The usery bit would be waking at four in the morning and usually sort of not actually getting up till I absolutely have to, the other mental health bit would be taking my fluoxetine when I go to wash my teeth or alternatively forgetting to take it and then would come a hectic day: coffee for breakfast, e.mails, reports to write, minutes to catch up, maybe a trip to Skye to meet our members, maybe a talk to students, maybe an evening meeting but perhaps going round to a friends or out for a walk. Usually drinking too much, often making a nice meal. I really love middle eastern at the moment. Not remarkable, not dramatic an ordinary life that tends to keep me busy and happy.

But of course you wouldn’t want me here if you didn’t want to learn some connection to your profession.

I first got involved in speaking out, in trying to make the world a better place after I was admitted to hospital 27 years ago, life had become very grey, sort of dark. I had drifted into an angry sense of purposelessness. I had lost my sense of who I was and my belief in being loved and being valued and out of this came the desire to die and hurt myself. The hospital I was in was old and decrepit the walls had holes in them. The chairs were often broken. A tall taciturn man shouted at me that I was scum in a place like that and I realised I was. The elderly patients would sometimes escape from the ward upstairs and dash down to our ward to scrabble for cigarette buts in the ashtrays. The alcoholic friend I made who had learning disabilities was discharged after taking a drink when the nurses had taken him to the pub with them once too often . My psychiatrist told me I was too young to want to die. The old man admitted the same time as me had no way of keeping his trousers up until the patients clubbed together and bought him a belt. All the old stories. The old sad stories that continue in modified versions today.

Out of those stories came a desire to change things to make the world better for my companions and friends. It was a time when the old asylums were coming to be seen as anachronisms and old forms of treatment as barbaric. It was a time when ’Survivors Speak Out’ was established and people like me started to speak out for justice and proper and fair treatment. In my case I joined a group of young people and we set up a user only drop in centre for young people from which professionals were banned. In our passion we called it McMurphy’s after ‘One flew over the cuckoo’s nest’.

In one way or another I have been doing this ever since.

I have made my life amongst people with a mental illness for the last 27 years and I have lived with an experience that has been defined as schizophrenic since I was 28 and my son was five months old and my life imploded into what is known as psychosis.

I can understand that you might not understand psychosis but I can imagine that many of you may be very familiar with the experiences that lead up to it.

I will describe the last time I was admitted to hospital – it was a year after I had split up from my wife. It seemed to me that I had lost everything, photo’s of my family, all the memorabilia of the last 25 years and longer, the friends that I thought I had, much of my income, the lovely house and garden and, with each e.mail we exchanged, my life became that bit more unpleasant. I found that I was becoming irritable, that I was always working, that I couldn’t stop thinking, the early hours of the morning would find me lying on my mattress with its dirty rumpled sheets, filled with sadness washing all of me, my thoughts flitting every which way. In the evening I would drink and drink and my soul would weigh heavily on me. I stopped remembering to take my medication; washing and tidying seemed a waste of time. I would wake in the morning with my eyes gritty with tiredness and then stagger into work. It was a horrible time which by and by led to me deciding that I was a useless human and concluding that if I could become pure and a spirit in the air, I would be able to beam love at everyone I loved.

My chosen method was to want to get rid of all my blood and to cover myself with petrol and set light to it.

I am profoundly grateful that I was sectioned and taken into hospital. In hospital I was determined to harm myself and turn into a spirit. I would pour boiling water over my hands, scratch myself with forks and pins and periodically run away to be followed by pounding feet and alarms going off.

For the first 7 weeks nurses never left my side, I wasn’t allowed to turn the light off and had to go to the toilet with the door open. The thought of being able to walk on grass or touch a tree was a dream that only came true the day I was taken across town for my tribunal for my section.

It is easy in these situations to find things to be angry about and to become bitter and sad but for me, I find that I am in retrospect grateful, although I added some more scars to my wrists they were not so many and most importantly I am alive and my life is flourishing.

And this is the message that I would pass on.

Injustice in our personal treatment is easy to find, bitterness and despair at the lack of any obvious solution to our distress is all around us and our treatment by society is ludicrous. I am sure you know the statistics but let us remind ourselves of them again –

• 85 % of people with a severe mental illness are unemployed,

• 40 % of the homeless have a mental illness,

• 90% of prisoners have a mental health problem

• 33% of us have experienced harassment because we have an illness .

This is so wrong, it is why we have a voice. We are a community that lives on the margins of society, often in poverty, often with little hope, very often in isolation and loneliness. People are frightened of us and suspicious of us and don’t know what to say to us.

I have been called psycho and schizo by people I am very close to. I have been told I don’t deserve to live by people who have only met me five minutes before.

When we feel that we are not acknowledged; that we are not respected that, like that fellow patient told me, we really are seen as scum by other people. We can withdraw even further and become even more alienated or we can draw bonds with our companions and through shared experience and learning we can give ourselves back dignity; by speaking out, by learning to respect ourselves we can say we will help make the world a better place and, in doing this, will find value. We can say we will support our quest for rights and in doing so we will find self confidence and we will tell and celebrate our stories and history and in doing so we will find validation and the possibility of reconciliation .

That is what we do in Hug; we unite, we find shared concerns, we grow together and try to support each other. We can have a wonderful time; a wee group of us driving from Inverness to Oban to find out our members views there. We can laugh and natter and chatter and listen to music and in between times change the world. Paying me to do things like this is amazing.

In Hug we find out our members opinions and turn these into reports each of which has had some sort of effect either on policy or services. We educate professionals. It is wonderful to walk into a room of people and at the end of the day read an evaluation that says what we just did was life changing. We create dvd’s to educate and do creative writing to illuminate; we hold art exhibitions to dazzle. We have met thousands of school children. We have spoken in parliament. We have influenced legislation. We have spread the word as far afield as Romania, Poland, Ghana Egypt and Nepal. We attend committees. We respond to consultations. We get angry and sad and we laugh and find ways to celebrate the world when there seems to be no reason to do so.

I’m going to wind up now with two personal observations. In a group like HUG that is about changing the world we can create a story of liberation but it is easy to do two things –one is to come to see all around us as our oppressors; to view professionals and policy maker as inevitable accomplices in our marginalisation and exclusion. This is counter- productive. In HUG we almost always assume that the people around us would prefer to make our lives better. We are not here just to howl at indignity however tempting that might be; we are here to find ways forward with the vast majority of people who, we assume will be our allies and in that assumption barriers are crossed and bridges built.

The other side to this is that when we define ourselves as impaired and oppressed and downtrodden we can force ourselves into victimhood where each new act of discrimination or prejudice reaffirms our victimhood where the very act of challenging these actions and defining ourselves in these ways traps us in a world where we almost benefit from the comfort of our oppression. Hug for me tries to do the opposite of this. We try to divest ourselves of the comfort of victimhood ad grow into the comfort of citizenship and partnership.

And lastly what do we want from the people who help us.

What we don’t want is from a culture that sees us as ‘other’ that in the need to protect staff and construct boundaries comes the need to see us as the, ‘clients’, ‘the users’, ‘the sufferers,’ who are different to you and your friends; the culture that sees us as manipulative and challenging and finds itself tempted, when observing us from the other side of a desk to view us as inherently difficult and challenging. Almost alien from the everyday existence of the professionals who assist us.

I think I alluded to what I want and get in my description of my current helpers. I am given dignity and warmth, I am given respect and I am listened to. I am protected when I need to be and made free at the same time. When I can no longer struggle, I seem to offer up responsibility and then take it back when I am ready to do so. I am given a voice and I am listened to. I am offered the option of hope and also the possibility of safety. That seems good to me.

I am fortunate. My life is not one of poverty; it is not one of loneliness; it has hope, it has dignity, it has recognition, it has occupation and value. Many, many, of the people I work with don’t have that; they are trying to change that and I am privileged to help them in that task, just as I hope you feel you are in the work you do in your different ways, to offer the chance for people to feel that they are not alone, that they will be listened to and one day life might be different and better.

Thank you.

(Photo: crocus 2020)