This Time, its Personal.
I have been looking over my blog recently and it struck me that there isn't too much on there about me. That is me. That is David. That is I. It mostly seems to be rants about mental health issues. So, this time, as we have been doing personal testimonies of our own experience of mental ill health at the Talkbank group, I thought I would print mine here to give you a chance to get to know exactly how, in the words of the great Talking Heads song, I got here. So, here goes...
I was first diagnosed with schizo-affective disorder in 1998. For those of you who don’t know, this basically means that I suffer from the symptoms of both schizophrenia and mood disorder at the same time. It seems I have the best of both worlds! Mine is a chronic condition, episodic in nature, which will require medication probably for the rest of my life. However, there is a long and tortuous story behind this diagnosis, and it is one which begins much earlier than 1998.
I first noticed a change in my mood around 1990. My friends and girlfriend seemed to recognise this change, but rather than sympathy, I seemed to get resentment and misunderstanding. Friends, although concerned, began to regard me as some sort of pathetic hanger-on and, as it was my first year away at university, we soon drifted apart. The same was true of my girlfriend.
With hindsight, I can see more clearly that it took a great deal of time for me to get over the wrench of moving away from home and losing some of my closest friends. I had known some of them since childhood and they seemed to be a part of me, as much as any member of my family. Needless to say, their changing opinions of me had a devastating effect on my self-esteem and self-image. I was no longer “Dave”, the clever, funny one who was good at English and popular with girls. I was “Dave”, the sad, lonely, pathetic one, ready to put a downer on any party. But now I found myself away from home, in a strange environment with a worsening depression.
During my early days at university I would often sit alone in my room in the halls of residence, drinking and regretting more or less everything and listening to loud, sad, stupid songs about love and the loss of it. Other students would bang on my wall to get me to turn down the music, but I was often so drunk that I never heard them. It seemed I had gone from a normal, popular individual, to a social outcast within months. It was as if my depression was infectious and nobody wanted to be near it.
I don’t know how I managed it, but eventually I did make friends and, indeed, went on to pass my degree. I was able, somehow, to put on a front and hide my illness. The only thing was that I was left with a gaping hole in my emotional life, which I still sometimes feel to this day, and my depression continued internally.
Despite this, I still didn’t seek treatment and went on to get a job. It was only after almost two years of pressurised and underpaid work that I decided enough was enough and I went to see my GP. He referred me to a psychiatrist and I was put on a commonly prescribed anti-depressant. By this time it was 1996. Unfortunately, it was around this time that my problems seemed to really begin.
While taking the anti-depressant, I began to have my first manic/psychotic episode. I began, for example, to think that my Mum was trying to poison me and brought my own food into the house. I began to think that things on the radio and television were about me, as if the presenters were specifically talking to me, rather than their audience. Also, at this time I disappeared to London, spent the night sleeping in my car and was eventually picked up by the police sitting on a bench in East Finchley. When the police turned up I told them I was waiting to be picked up so that I could go and see Madonna. For the first time in my life I was insane with delusions.
My parents who, needless to say, were sick with worry, brought me back home and my medication was changed from an anti-depressant to an anti-psychotic and I was given the diagnosis of schizo-affective disorder.
The next three or four years were perhaps the most unproductive of my life. Due to the side-effects of medication and the negative symptoms of the disease, I virtually slept through this time, put on several stones in weight and became so unmotivated that I hardly left my room. So, I went through another medication change, but in the interim experienced another psychotic episode. After this I was put on three different types of medication and became so fed up with the situation that I actually stopped taking it. This was not my greatest of ideas and soon my symptoms returned and it was this latest episode of illness that I believe was most damaging to me.
As on previous occasions my psychosis started out as a not unpleasant experience. It had a slight hint of a manic high about it, as usual, and after being so unmotivated I genuinely believed that I was getting better. The fact that I thought that I had composed most of the theme tunes on television, or that I had solved the theory of everything in physics, was only a sign to me of my burgeoning greatness. I was certainly not ready to be sectioned, but, in February, 2004, I was. And here began my problems with the mental health services.
I can only say that the handling of this section left something to be desired, and I still have questions over its legality. What is known is that I was put under a defacto detention whilst in hospital, and I do know that this certainly was illegal. Doubtless to say I was angered by this and wanted to leave the ward. There was now no way of stopping me. However, instead of becoming frustrated by the system and its inability to keep me in hospital, my then psychiatrist decided to vent his anger on me, saying that if I chose to leave he would simply refuse to treat me and, furthermore, leave me without any medication. Having taken legal advice, I left the hospital, fully expecting my psychiatrist to be taken to tribunal. However, this never happened, and what followed for me was a prolonged and harrowing demise into insanity.
Because of my psychiatrist’s behaviour I was unable to see another doctor for eight months. During this time I became increasingly delusional and paranoid and my illness was accompanied with a serious amount of drinking. I seemed to be in a hopeless position. The drinking abated on occasions due to constant detoxes, but in the absence of any suitable medication, it was my only coping mechanism. I spiralled completely out of control, but was met only with an infuriatingly slow response from professionals.
At this time I began to believe that I was being watched 24 hours a day and, indeed, that my every thought was being monitored by some outside force. Every time a taxi pulled up outside my house, I thought its occupants were spying on me. I also suffered from terrifying hypnogogic hallucinations. These occur when you are on the brink of sleep and are therefore paralysed when you have them. On one occasion I thought that someone with a knife had got into my flat and I was wrestling with him on my bed. “How did you get in here?” I said. “Through the door”, a voice intoned as the knife thrust itself through the palm of my hand. Needless to say, I awoke completely terrified, still thinking someone was in my home, and I searched my flat from top to bottom.
When I finally did see another doctor, I was told various things which I can only say I found, and still find, totally unsettling. For example, that there was, despite my history and what must have been clear presentment of distress, nothing wrong with me. That if I decided to commit suicide it was entirely my choice, because, once again, there was nothing wrong with me. That I should be more responsible, stop relying on others and get out and do something. Even though I was deeply psychotic I knew that what I was being told was wrong. These were mental health professionals and frankly, should have known better. Because of their actions, I began to feel, perhaps for the first time, a profound sense of the social alienation that is often experienced by those with severe mental ill health. I was, by now, estranged from my parents and from those who were supposed to care for me. I felt totally alone.
However, I was lucky in the fact that, no matter what I had put my parents through, they still cared for me, realising that I was ill and my behaviour completely out of character. It was only with their intervention, and at their own great financial cost, that I was finally put into private treatment. I was saved from a situation that could have only ended up in tragedy and, lo and behold, after only two weeks of treatment I was found to have a deep, underlying psychotic illness which required medication. I had waited around eighteen months for any conclusions to be drawn about my diagnosis or to get any such medication from the NHS.
Why this all happened is still something of a mystery to me, but it certainly served to somewhat radicalise my point of view. I wasn’t willing to sit back and allow things like this to happen. Instead of the passive, gentle person I had been at the beginning of my illness, I now found myself more aggressive, abrasive and willing to argue. There was also a bitterness and resentment both at the disease and at the mental health services.
I can say now that, in many ways, this has abated and resolved itself into some form of contentment. My relationship with my parents, after going through such trauma, is now back to something like normal. And even mental health services, which now develop networks of support and early intervention plans for patients, are getting somewhat better.
Indeed, oddly enough, as well as being my nemesis, mental ill health has also been my saviour. It has, ironically, offered me a way out of the hole it first created for me. The voluntary work I do and the writing I do is all based around the knowledge I have acquired about mental ill health.
I am also still a great believer in art and literature and its power to civilise and redeem. As some of you will know, my favourite book is “The Great Gatsby”. On one level the book is about the death of dreams, the death of hope, and I often wonder what I could have been without this illness. As Marlon Brando said in “On the Waterfront”, “I could ’a been a contender”. But Gatsby is great because he still believes in “the green light…the orgastic future that year by year recedes before us”. He is great because of his “extraordinary gift for hope”. Although I’m not quite like Gatsby; I don’t quite believe in “the green light”, I do believe in “The Great Gatsby”, the book by F.Scott Fitzgerald. Or, as one film-maker once put it, “I don’t believe in God, I just believe in Billy Wilder”. At least that seems like a start to me.
So there it is, folks. My little story. It is a true story. Only the names and events have been changed! But seriously, it would probably take a book to convey all of my feelings about this, so I hope you enjoyed this abridged version and it wasn't too long. In fact, I know I may be beginning to outstay my welcome. So that's all for now from you normal, average, paranoid and delusional man.
I was first diagnosed with schizo-affective disorder in 1998. For those of you who don’t know, this basically means that I suffer from the symptoms of both schizophrenia and mood disorder at the same time. It seems I have the best of both worlds! Mine is a chronic condition, episodic in nature, which will require medication probably for the rest of my life. However, there is a long and tortuous story behind this diagnosis, and it is one which begins much earlier than 1998.
I first noticed a change in my mood around 1990. My friends and girlfriend seemed to recognise this change, but rather than sympathy, I seemed to get resentment and misunderstanding. Friends, although concerned, began to regard me as some sort of pathetic hanger-on and, as it was my first year away at university, we soon drifted apart. The same was true of my girlfriend.
With hindsight, I can see more clearly that it took a great deal of time for me to get over the wrench of moving away from home and losing some of my closest friends. I had known some of them since childhood and they seemed to be a part of me, as much as any member of my family. Needless to say, their changing opinions of me had a devastating effect on my self-esteem and self-image. I was no longer “Dave”, the clever, funny one who was good at English and popular with girls. I was “Dave”, the sad, lonely, pathetic one, ready to put a downer on any party. But now I found myself away from home, in a strange environment with a worsening depression.
During my early days at university I would often sit alone in my room in the halls of residence, drinking and regretting more or less everything and listening to loud, sad, stupid songs about love and the loss of it. Other students would bang on my wall to get me to turn down the music, but I was often so drunk that I never heard them. It seemed I had gone from a normal, popular individual, to a social outcast within months. It was as if my depression was infectious and nobody wanted to be near it.
I don’t know how I managed it, but eventually I did make friends and, indeed, went on to pass my degree. I was able, somehow, to put on a front and hide my illness. The only thing was that I was left with a gaping hole in my emotional life, which I still sometimes feel to this day, and my depression continued internally.
Despite this, I still didn’t seek treatment and went on to get a job. It was only after almost two years of pressurised and underpaid work that I decided enough was enough and I went to see my GP. He referred me to a psychiatrist and I was put on a commonly prescribed anti-depressant. By this time it was 1996. Unfortunately, it was around this time that my problems seemed to really begin.
While taking the anti-depressant, I began to have my first manic/psychotic episode. I began, for example, to think that my Mum was trying to poison me and brought my own food into the house. I began to think that things on the radio and television were about me, as if the presenters were specifically talking to me, rather than their audience. Also, at this time I disappeared to London, spent the night sleeping in my car and was eventually picked up by the police sitting on a bench in East Finchley. When the police turned up I told them I was waiting to be picked up so that I could go and see Madonna. For the first time in my life I was insane with delusions.
My parents who, needless to say, were sick with worry, brought me back home and my medication was changed from an anti-depressant to an anti-psychotic and I was given the diagnosis of schizo-affective disorder.
The next three or four years were perhaps the most unproductive of my life. Due to the side-effects of medication and the negative symptoms of the disease, I virtually slept through this time, put on several stones in weight and became so unmotivated that I hardly left my room. So, I went through another medication change, but in the interim experienced another psychotic episode. After this I was put on three different types of medication and became so fed up with the situation that I actually stopped taking it. This was not my greatest of ideas and soon my symptoms returned and it was this latest episode of illness that I believe was most damaging to me.
As on previous occasions my psychosis started out as a not unpleasant experience. It had a slight hint of a manic high about it, as usual, and after being so unmotivated I genuinely believed that I was getting better. The fact that I thought that I had composed most of the theme tunes on television, or that I had solved the theory of everything in physics, was only a sign to me of my burgeoning greatness. I was certainly not ready to be sectioned, but, in February, 2004, I was. And here began my problems with the mental health services.
I can only say that the handling of this section left something to be desired, and I still have questions over its legality. What is known is that I was put under a defacto detention whilst in hospital, and I do know that this certainly was illegal. Doubtless to say I was angered by this and wanted to leave the ward. There was now no way of stopping me. However, instead of becoming frustrated by the system and its inability to keep me in hospital, my then psychiatrist decided to vent his anger on me, saying that if I chose to leave he would simply refuse to treat me and, furthermore, leave me without any medication. Having taken legal advice, I left the hospital, fully expecting my psychiatrist to be taken to tribunal. However, this never happened, and what followed for me was a prolonged and harrowing demise into insanity.
Because of my psychiatrist’s behaviour I was unable to see another doctor for eight months. During this time I became increasingly delusional and paranoid and my illness was accompanied with a serious amount of drinking. I seemed to be in a hopeless position. The drinking abated on occasions due to constant detoxes, but in the absence of any suitable medication, it was my only coping mechanism. I spiralled completely out of control, but was met only with an infuriatingly slow response from professionals.
At this time I began to believe that I was being watched 24 hours a day and, indeed, that my every thought was being monitored by some outside force. Every time a taxi pulled up outside my house, I thought its occupants were spying on me. I also suffered from terrifying hypnogogic hallucinations. These occur when you are on the brink of sleep and are therefore paralysed when you have them. On one occasion I thought that someone with a knife had got into my flat and I was wrestling with him on my bed. “How did you get in here?” I said. “Through the door”, a voice intoned as the knife thrust itself through the palm of my hand. Needless to say, I awoke completely terrified, still thinking someone was in my home, and I searched my flat from top to bottom.
When I finally did see another doctor, I was told various things which I can only say I found, and still find, totally unsettling. For example, that there was, despite my history and what must have been clear presentment of distress, nothing wrong with me. That if I decided to commit suicide it was entirely my choice, because, once again, there was nothing wrong with me. That I should be more responsible, stop relying on others and get out and do something. Even though I was deeply psychotic I knew that what I was being told was wrong. These were mental health professionals and frankly, should have known better. Because of their actions, I began to feel, perhaps for the first time, a profound sense of the social alienation that is often experienced by those with severe mental ill health. I was, by now, estranged from my parents and from those who were supposed to care for me. I felt totally alone.
However, I was lucky in the fact that, no matter what I had put my parents through, they still cared for me, realising that I was ill and my behaviour completely out of character. It was only with their intervention, and at their own great financial cost, that I was finally put into private treatment. I was saved from a situation that could have only ended up in tragedy and, lo and behold, after only two weeks of treatment I was found to have a deep, underlying psychotic illness which required medication. I had waited around eighteen months for any conclusions to be drawn about my diagnosis or to get any such medication from the NHS.
Why this all happened is still something of a mystery to me, but it certainly served to somewhat radicalise my point of view. I wasn’t willing to sit back and allow things like this to happen. Instead of the passive, gentle person I had been at the beginning of my illness, I now found myself more aggressive, abrasive and willing to argue. There was also a bitterness and resentment both at the disease and at the mental health services.
I can say now that, in many ways, this has abated and resolved itself into some form of contentment. My relationship with my parents, after going through such trauma, is now back to something like normal. And even mental health services, which now develop networks of support and early intervention plans for patients, are getting somewhat better.
Indeed, oddly enough, as well as being my nemesis, mental ill health has also been my saviour. It has, ironically, offered me a way out of the hole it first created for me. The voluntary work I do and the writing I do is all based around the knowledge I have acquired about mental ill health.
I am also still a great believer in art and literature and its power to civilise and redeem. As some of you will know, my favourite book is “The Great Gatsby”. On one level the book is about the death of dreams, the death of hope, and I often wonder what I could have been without this illness. As Marlon Brando said in “On the Waterfront”, “I could ’a been a contender”. But Gatsby is great because he still believes in “the green light…the orgastic future that year by year recedes before us”. He is great because of his “extraordinary gift for hope”. Although I’m not quite like Gatsby; I don’t quite believe in “the green light”, I do believe in “The Great Gatsby”, the book by F.Scott Fitzgerald. Or, as one film-maker once put it, “I don’t believe in God, I just believe in Billy Wilder”. At least that seems like a start to me.
So there it is, folks. My little story. It is a true story. Only the names and events have been changed! But seriously, it would probably take a book to convey all of my feelings about this, so I hope you enjoyed this abridged version and it wasn't too long. In fact, I know I may be beginning to outstay my welcome. So that's all for now from you normal, average, paranoid and delusional man.
Comments
I can relate to how an overwhelming negative enviroment, which can be compounded by genetics, can cause our lives to spiral out of control. I found it somewhat akin to becoming a 'spectator' in our own lives.
The truly positve part of this David is that you have the courage to challenge the effects of past events. Deep within you, is still that dogged determination that your world will get better again.
Your 'true self' is still very much there. As you continue to recover, with the vital support of empathetic others, David will emerge triumphant and strong.
We all have the right to a happy life. Nobody has the right to undermine our value as human beings. Like you I have found my own mental health issues a 'bizarre blessing'. Undaunted, our lives will get better. David I am here for you, good sir. I hope to see you soon. Total respect. I apologise, once again, if my above comments were a bit confusing. I did try. Warm wishes Klahanie aka Gary.
First of all I would like to thank you so much, for all the very kind compliments you paid me. They mean a great deal to me and I am extremely appreciative. You are such a kind, genuine and sincere person David.
I was just as moved by your story as I was when you first shared it with us at our Talkbank Group.
You speak with great honesty, openess and integrity, there is such power in your words, and you also show a high degree of awareness too.
You say that you often 'wonder what you could have been without your illness' believe me David when I say that you can still be whatever you choose to be, with self-belief anything and everything is possible, you are a very gifted individual.
You can be 'THE GRANDEST VERSION OF THE GREATEST VISION' you have ever had of yourself if you so choose!
My fondest wishes to you David, and I hope to see you again quite soon....D x
Bloody brilliant blog and thanks for sharing, as you shared your story to the other Talkbank members. Thank you so much for doing this and as for what you could have been - you already are, you just to develop the self-belief a little. To echo Emma, you're an inspiration, a real trooper and I'm only sorry that you received such shoddy treatment when you needed to trust the powers that be. All the very best and keep up the good work!
Quite a story and I know mine is too; glad life is better now...and you're off to Hollywood. And thank you so much for reading on my blog site. Your comments encourage. Most sincerely, dcrelief