CARE INSPECTORATE
EDINBURGH
Hello everyone
It is wonderful to be here and I am thrilled as always to have an opportunity to talk about my life and the life of people that are important to me.
In twenty minutes I am going to cover my experience of schizophrenia, my recovery journey and the treatment of people with mental health problems and then for another ten minutes we are going to talk about mental health in the workplace.
So no huge demands on us then……
Hopefully what we say will be interesting enough for you to want to discuss it after we have finished speaking. Hopefully there will be a hub bub of conversation and ideas and thoughts, but if not at least it means you will be early for lunch.
I work for an organisation called HUG action for mental health which is a voice for people with a mental illness living in the Highlands. We have lots to say and lots to do, if later in the day any of you want to talk to me or Lesley, who is one of our members, about work we may be able to do with you in the future do speak to us.
As I write this I am lying on my couch and trying to work out what to say. When we say recovery journey we often dwell on the positive and the glowing. I don’t tend to do that.
Recovery is living well in the presence or absence of symptoms and is unique to each individual it can’t therefore be anything more than the story of our life unless we know people who actively set out to live as unpleasant a life as possible.
I tell my story and I do not know how much I am the author of that story and how much things happen to me along the way and how much I make things happen as an individual with control of my destiny.
And my story.
Well my story,
When we say those blunt words, paranoid schizophrenia and alcohol abuse and the lesser words of depression and anxiety. Well then our story is warped from the very beginning.
I can’t say such words and attach them to myself without a reaction and warping of my identity and what I say. They have within themselves a power that shapes how I am seen.
They are probably the reason that I have an m.b.e., because without those words my life has been relatively unremarkable, relatively ordinary and yet when we mix such labels into my life then people pause and wonder how I cope, how I do what I do and achieve what I do.
And it obsesses me, I cannot escape from the way I think other people see me and I cannot escape from how I think I see me and yet if I were to construct a map of my life my road would not be about schizophrenia and it would not be about recovery from Schizophrenia.
Yes I have been in hospital a few times and yes I get my jag every two weeks and yes I see a c.p.n. and a psychiatrist and yes I am detained under a compulsory treatment order but that is not me, it is strange how I insist it is not me.
Me is going out in half an hour to babysit a friends two children, its arriving and having the dog leap all around me and insist on being stroked and it is finding my shoes carried around the house by him and reading Cora a bed time story and hearing how her first week at school has been. It is walking home later in the gathering dark to drink fruit juice and feel so proud that at least some of the time I don’t drink and it is picking up the phone to Wendy, my love, and talking for half an hour, an hour, I don’t know, it depends on how we feel and it is looking forward to when I see her at the end of the week and then later it is relaxing in the warmth of my bed amid my books and music until I get up to go to work in the morning.
And this morning for ten minutes it was going out to get my jag, thinking the injection was a bit more painful than usual and also being glad that the nurse offered me a plaster so my shirt didn’t get stained with the wee bubble of blood that gets left behind.
And somewhere along the way I may have bored myself by telling myself how much I want to be dead , but generally I was answering e.mails, organising things and wondering if I would remember to water my plants in the evening.
Generally I was just doing the ordinary everyday job of living my life and enjoying living my life at that.
Some people see illnesses such as this as tragedy as something to dread above all and yet for me my tragedies have little to do with illness, tragedies were small simple things, like when my mum left me on the first day of boarding school without saying goodbye or when our yacht sank on the Fastnet race and we worried for my dads safety or when I fell out of love with my wife or when five years ago my son said I was dead to him and that he would never speak to me again and kept to his word.
And yes, as I write this, I see that I do indeed deceive both myself and you. There is somewhere an urge to say; but we are normal, we are ordinary, we are just like everyone else and so we are.
But in the world of mental illness there is a sadness that is almost impossible to express and that sadness and that whirlwind of confusion and rage can destroy both ourselves and those that we love.
That is where I resent the gloss, the bright smile that says we are more than capable of having wonderful lives, that laugh that says that despite having symptoms of a serious illness our wellbeing can flourish, in fact, we can almost be dancing with the joy of our lives.
Because it’s often a bit crass really.
When you have spent the night wracked with anxiety you do not bounce out of bed in the morning delighted with the sound of bird song
When you are so depressed that you cannot make a cup of tea or get dressed you do not chatter charmingly and happily to your neighbours when they come to visit.
When you are planning how to die because of your evil you do not decide to organise a celebration for your friends.
All a bit silly because despite this, we strive and we hope and we bear that fragile hope that life will get better, that we may reach places we daren’t dream possible when we are filled with illness.
I am going to divert a wee bit now, this morning I was talking about someone living right on the very edge, that precarious place where life is in the balance and I was agreeing that it was a tragedy that she wasn’t offered more help and more support, I was saying how on earth in 2014 can we abandon someone and tell them if they choose suicide then that is their responsibility when all along they are wanting not to die, are wanting that brief gesture that helps them carry on for another few days and then another few.
And this afternoon I was talking to a man and he seemed so tired and so defeated and so determined not to become dependent on services, so determined not to give up; to keep his family, his friends and I thought to myself; surely we could offer him a scrap more? Just some morsels of comfort.
And then I turned in to look at my heart and I thought to myself what would I offer such people? How would I give them hope or courage or motivation or even the blessing of sleep? and I found that I did not know how I could do such a thing even if I was given unlimited time and unlimited resources.
When people like me talk about services we sometimes cry out in a rage at the wasted lives, the spoilt lives, the abandoned dreams and the fractured families and we say if you just, if you just
And to be honest I don’t know what the if you just is.
Sometimes I think it is very simple, I think of the isolation and loneliness many people experience and I pause and think if only people had friends, had people to talk to, had an occasional cuddle, had things to do with the day instead of staring deep into the unhappiness of their hearts then there would be a shift and a change.
I think of such words as compassion, and respect, and I think of security and protection and hope and sometimes I dare to think of things like laughter and fun and meaning and purpose and in these small words we find huge, huge, possibilities.
But it is more complicated than that, if it weren’t we would have a happy beautiful world and people would not suffer so.
I am lucky with what is meant to be my illness, I now have many friends, many things to do, sometimes too much, I have a purpose to my life and lots of cuddles and enough money to feel safe but many of the people I work with do not.
They are subject to sometimes horrific stigma and prejudice and sometimes that stigma comes from themselves, they live on a tiny amount of money, have little chance of getting work and are often incapable of it but live in fear of the medical reviews and the whole raft or welfare reform changes and often, because they suffer in the ways they do they act in ways that lose them friends and they can cope with this with drink or drugs.
And sometimes the weight and the burden of the past weighs on them so heavily that it is a weary long, long, journey to see beyond it and a mountain of effort to believe they have any value and anything to give; a mountain of effort to stop themselves in the horror of self-loathing, to stop themselves from doing all those things that confirm their self-hatred.
And yet despite those words, which highlight how absolutely terrible mental illness can be I also see those same people, telling stories, giving speeches, cooking each other meals, sharing cigarettes, visiting each other and encouraging each other and in this I see that, despite the sadness, life can be positive and hope can shine even when we wonder if ever we will work again or love again.
I have been skirting around my story, I am no longer quite sure how I interpret my life and how I feel about it. in fact I have just written 100 000 words in a book all about it and still I am confused and still I am hesitant about what I can tell you.
I was first admitted to hospital over 30 years ago after a suicide attempt, a young idealistic and very miserable student in one of the old asylums busy closing down with the advent of care in the community. I remember the holes in the walls, the broken furniture, I remember that often the nurses were more drugged up than us which points to the value of inspection bodies.
I remember an old man walking round and round telling me that I was scum and the realisation that I now had a new role and a new way of being seen and also the realisation that I wanted to do something to make the life of myself and my fellow patients better.
At that time I was diagnosed with a personality disorder. It was only 6 years later, after the birth of my son that life collapsed again and I was told that I was schizophrenic.
I suppose my conviction that I was filled with devils, that I was evil, the belief I had that every bright spark of life was a spirit warping and altering my thoughts. And I suppose the fact that I couldn’t touch my wife or my baby because I was sure they would be poisoned by my evil and my conclusion that I needed to die to protect the world from me must point to the fact I was psychotic.
And I suppose the scars on my wrist the burns on my hands must justify the fact that I was sectioned and spent the next three months in hospital.
And this is where everything is so complicated to me, I just cannot. I handle this diagnosis of schizophrenia and I turn it over and I think to myself; yes I can see it, I understand it but when I try to fit it over me, to step into it and identify with it I do not understand, it itches and has creases and just doesn’t seem right.
It is an ever present feeling in me that I am evil, that I am responsible for untold suffering. At the moment with the lovely life I am living it is just a background hum though sometimes I worry, I worry whether it is right to expose my partner to someone as bad as me.
For much of the time I yearn to fit that diagnosis to me, it would solve so much, it would take away so much guilt, it would make sense of things and presumably if I accepted it I would be happy to take my medication and not be on a compulsory treatment order and yet I cannot and I do not understand why.
I look back over the years, I have sat with my lovely c.p.n. peering at my notes, seeing those stark words that describe my symptoms, the times when I have been in hospital and my repeated attempts to die when I am in that place.
And I look at those words, where each time I stop taking my medication I end up not sleeping, not eating, threatening to burn myself alive, where each time I end up being specialled by nurses, being prevented from pouring boiling water over me, from ripping my skin with broken drinks cans and in my mind I say of course that is schizophrenia, of course that explains what happens to me and of course that explains the wounds I have created in my close friends and loved ones.
And yet I do not believe it.
I constantly think it’s all a big mistake, a huge coincidence .
At the moment my life is so wonderful that I think to myself; isn’t it obvious to everyone how good my life is and how far from illness I am? At other times i say to myself; how dare they think that injections and labels can obscure my fundamental badness and I turn away from the comfort of my friends and helpers.
Earlier I said something about being ordinary and I am that but just as everyone is also extraordinary, my life with its six hospital admissions and my present section which has lasted for four and half years now does make me a wee bit different.
When it is hot and I am in my shirtsleeves I do worry what strangers will feel when they see the scars on my wrist and I do wonder what to say about my life when I meet new people.
But there is something about my life that makes my journey a good and pleasant one.
Yes I said earlier I am no tragedy but if you were so inclined you could see my failed exams at university, my repeated admissions to hospital, my failed marriage the hatred of my son as a tragedy and you could say that is what schizophrenia does to people and you might be right and I might dispute it but there is so much more to my life than illness.
I go back to my everyday life, I do not wake up feeling ill or schizophrenic and I do not live a life of sadness at the moment.
I, much to my surprise, have some lovely friends, yesterday I was sitting amongst sweet peas and apples drinking wine in a friends garden, the night before Wendy and I were eating spinach pie and being silly at other friends, that morning we were sat in a café with more friends and their children drinking coffee and eating chips and later we were trawling the charity shops for bargains.
At the end of this week I will be mixing with writers, trying to understand why I write, wondering what I want to do with my writing, spending time editing my book and the week after I will be with my love and my parents travelling around Argyll and in between I will be working and in that work finding purpose and interest and distraction.
My life is wonderful.
I don’t know why my life is so good and the life of so many others isn’t.
Maybe it is that I have a supportive family and that I am reconciled with them after all those years when I blamed them for everything
Maybe it is because the medication works for me
Or perhaps it is because I have an income and friends and things to do
It might be because I have very good psychiatric support and whenever I experience blips and stumbles my helpers are there to pick up the slightly bewildered pieces.
It might be because I am in love and that makes a huge, huge, difference to me. In fact all the difference.
It might be that I have a job in an organisation where my idiosyncrasies are accepted, where I feel included and accepted and valued.
I don’t know, all I know is that for the moment my life is good and despite me saying at the beginning I would tell no glossy recovery story I have in fact told that story. I have the most wonderful life even though I am seen as having such an illness that people feel they can justify compelling me to accept treatment and medication against my will and that is quite something.
I was asked to talk a wee bit about the people, the services and maybe relate it to your own role.
To start off with I do not subscribe to the idea of oppression, even though it occurs and I am not too bothered by lapses in the way people speak to me. I have met many people who in the way they address me demonstrate a poverty of knowledge of equality legislation and mental health awareness but that is the gap between the words and the reality, I couldn’t care less if someone were to calls me a nutter or crazy if I knew they cared for me and had a fondness for me.
I have no wish to be in the company of someone who knows the right words to say, the correct responses but whose demeanour states over and over their dislike of me or people like me. I don’t suppose that helps you.
Many of us feel we are a burden a weight on the state, something too unpleasant to talk about, we wish the warmth and humanity and respect that removes that feeling, we can revel in the silly joshing, the dark humour that shows someone understands us, is willing to go on the edge to say they know our world even though if they were overheard or they got us wrong they would end up in terrible trouble.
And sometimes it is because of our anxiety that we feel validated when people do that wee bit more work, step slightly out of role, give more time or more of themselves that we can feel; you are not speaking to us just because someone pays you to.
How you set standards for such complex and subtle things. I do not know.
I do know that almost everyone I have met in psychiatric services seems to do so for good reasons, they do so with a commitment to make things better, and often they get things incredibly wrong or work in a service where resourcing forces them to do a job they are ashamed of but mostly their heart is strong and good – those who demean us and I have met a few – I don’t know what you do about them. Maybe you understand why someone can be patronising or controlling or angry. Maybe you look further and look at a system where wages are poor and stress high and reward limited – I do not know your agency very well – but maybe when you are confronted with cuts and welfare reform and the myriad things that make life difficult you look at the system in general the resources that are there to keep people like me and Lesley healthy, the resources that keep us looking to the future with warmth and you comment on that too.
I have to thank you so much for listening.
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