Hello out there
I have just put the phone down on a long call from a friend, who has just finished reading my book. Despite her reassurances that it is all well written and very interesting, I know the book needs more work - it is hard to define, but it is a bit like when I was at University - I knew if I had written an outstanding essay or done really well in an exam, and I want to feel like that about my book before it goes to hard print.
I suppose some other people must feel differently - the majority of students when I was at Uni seemed genuinely not to know whether they had done well or badly in tests etc. And most young people I know now are on tenterhooks when it comes to waiting for exam results. But back then I suspected that they must be hiding something - I felt that everyone knew how they have performed even before their work was marked, because I did. I was never surprised when I received a mediocre mark, because I knew it was for mediocre work.
Thus with my book. It is good, I know that. It is very good in some ways. But it is not brilliant - it is not a bestseller, not ground shaking. Not yet. (Paul will hate me for writing this, he says you should never put yourself down because there are plenty of other people willing to do it for you. And he is right in a way, but I want to be honest about how I feel about what I write, because the honesty is important to the writing too. My book will help people to understand schizophrenia, or the diagnosing of it, better and to be reassured if they or those they love are told they have it. It will give hope to certain people, if they stumble across it. But I want it to be more than that. I want it to be of universal interest, universal application, universal hope. I want the average person who reads it to feel that their understanding has been enhanced in some way. And I won't feel that it is properly finished until and unless it accomplishes those aims. And if I don't feel that I have achieved that then I will just move on and start another book. on a completely different subject).
Which brings me to another point. Or two. The first is that I need an agent. I want an outside person to give me an honest, critical assessment of the book and to take up the job of marketing it - to find me a publisher. (Readers, if you know anyone in the field, please point them to me.) And the second is that instead of working on the book some more, trying to improve it as much as possible, and then, or alternatively, write a book on recovery, I am going to amalgamate these two jobs. I am going to improve the book and make it about recovery as much as about my history. So that I can use the subtitle that my dear friend just suggested to me on the phone, 'A journey of hope and recovery', and know that it is properly true.
Let me know what you think.
Louise x
Monday, 21 November 2011
Saturday, 19 November 2011
Empowerment
Hi guys
I feel truly empowered today. I mowed the lawn! 'Huh?' you may well be thinking. But this honestly was a big moment for me, because it is usually something Paul does. We have been living in this house for ten and a half years, and for all that time, he has mowed the lawn. Before that, I lived in various flats, none of which had a garden. A long, long time ago, I used to mow my Mum's lawn (fifteen, twenty years?) but that had receded into the distant mists of memory.
It has been so long since I mowed a lawn that I honestly believed it was something I could not, and should not, do. I thought I might mow through the cable accidentally, or run over something which would break the mower...I am not sure what I thought, but gradually over the years mowing the lawn began to seem like something that was totally out of my reach.
Part of the problem, of course, was that I did not need to mow the lawn, or particularly want to. OK, sometimes Paul left the job longer than I would have liked, but he always got on with it eventually. It is not one of his favourite tasks, but I reasoned that he did it better than I would have done. In the same way as he used to fill my car with petrol for me, he mowed the lawn and that made my life easier (he stopped filling my car up a couple of years ago, and I still sometimes feel a bit resentful about having to do it myself. Incredible, that. I used to be so independent).
I have been hemmed about with anxieties for a long time. In some ways, they have paralysed me. For example, I convinced myself for many years that I could not drive on the motorway or do any long distance driving, and it is only quite recently that I realised I am capable of this too. It is amazing how you can be hedged in by your mind, if you allow this to happen. Or rather, if it happens and you don't find or develop the tools to reverse the process.
Anyway, at the moment Paul is really busy. He seems no sooner to finish one job in the house or on one of the cars than he starts the next. Plus, of course, he works full time. So when I looked out at the garden this morning and decided that I wanted the lawn mowed, I knew that somehow I would have to do it myself.
I nearly lost my resolve. By the time Paul had got the mower out of the shed, where he keeps it behind loads of other stuff, and found the extension lead and set the whole thing up, he probably would have needed very little persuausion to just keep on going and mow the lawn for me.
But the kids had got wind of the fact that I was going to mow it, and this was big news for them. They all lined up in the conservatory to watch the show. And I decided that I had better give them value for money, so I got started. And carried on. And realised (remembered) that it is actually quite a pleasant job, and not difficult at all (and is indeed a bit like hoovering, as my niece had pointed out earlier over lunch, to hoots of derision from Paul).
The kids quickly lost interest, and started to play with the keyboard that I had just moved from the shed to the conservatory (I have had a massive clear out today). It was more lovely than I can explain properly to watch them through the glass, all four of them messing about together, dancing and singing in unison. They were playing so happily, and so unselfconsciously. Wonderful.
I carried on mowing, and was about half way through my task when I realised that I was getting a huge sense of achievement from this hoovering of the garden. I was doing something that I had convinced myself was beyond my capabilities, and it felt better than I could have imagined (and I do realise this must sound pathetic). I then realised something else - that going out to work would feel the same. That is something I have ruled out of my life for so long now. But I feel that I could do it. And even though I am not convinced that me going out to work would be the best thing for the family, it would almost be worth trying it just for a day or two, if only to get the sense of achievement that it would bring.
In the last day or two though, when I think about working I realise that really I just want to write and that writing is probably where my future lies. Nevertheless, I am still considering the options, because it feels so good to have those options.
All the best to all of you
Louise x
I feel truly empowered today. I mowed the lawn! 'Huh?' you may well be thinking. But this honestly was a big moment for me, because it is usually something Paul does. We have been living in this house for ten and a half years, and for all that time, he has mowed the lawn. Before that, I lived in various flats, none of which had a garden. A long, long time ago, I used to mow my Mum's lawn (fifteen, twenty years?) but that had receded into the distant mists of memory.
It has been so long since I mowed a lawn that I honestly believed it was something I could not, and should not, do. I thought I might mow through the cable accidentally, or run over something which would break the mower...I am not sure what I thought, but gradually over the years mowing the lawn began to seem like something that was totally out of my reach.
Part of the problem, of course, was that I did not need to mow the lawn, or particularly want to. OK, sometimes Paul left the job longer than I would have liked, but he always got on with it eventually. It is not one of his favourite tasks, but I reasoned that he did it better than I would have done. In the same way as he used to fill my car with petrol for me, he mowed the lawn and that made my life easier (he stopped filling my car up a couple of years ago, and I still sometimes feel a bit resentful about having to do it myself. Incredible, that. I used to be so independent).
I have been hemmed about with anxieties for a long time. In some ways, they have paralysed me. For example, I convinced myself for many years that I could not drive on the motorway or do any long distance driving, and it is only quite recently that I realised I am capable of this too. It is amazing how you can be hedged in by your mind, if you allow this to happen. Or rather, if it happens and you don't find or develop the tools to reverse the process.
Anyway, at the moment Paul is really busy. He seems no sooner to finish one job in the house or on one of the cars than he starts the next. Plus, of course, he works full time. So when I looked out at the garden this morning and decided that I wanted the lawn mowed, I knew that somehow I would have to do it myself.
I nearly lost my resolve. By the time Paul had got the mower out of the shed, where he keeps it behind loads of other stuff, and found the extension lead and set the whole thing up, he probably would have needed very little persuausion to just keep on going and mow the lawn for me.
But the kids had got wind of the fact that I was going to mow it, and this was big news for them. They all lined up in the conservatory to watch the show. And I decided that I had better give them value for money, so I got started. And carried on. And realised (remembered) that it is actually quite a pleasant job, and not difficult at all (and is indeed a bit like hoovering, as my niece had pointed out earlier over lunch, to hoots of derision from Paul).
The kids quickly lost interest, and started to play with the keyboard that I had just moved from the shed to the conservatory (I have had a massive clear out today). It was more lovely than I can explain properly to watch them through the glass, all four of them messing about together, dancing and singing in unison. They were playing so happily, and so unselfconsciously. Wonderful.
I carried on mowing, and was about half way through my task when I realised that I was getting a huge sense of achievement from this hoovering of the garden. I was doing something that I had convinced myself was beyond my capabilities, and it felt better than I could have imagined (and I do realise this must sound pathetic). I then realised something else - that going out to work would feel the same. That is something I have ruled out of my life for so long now. But I feel that I could do it. And even though I am not convinced that me going out to work would be the best thing for the family, it would almost be worth trying it just for a day or two, if only to get the sense of achievement that it would bring.
In the last day or two though, when I think about working I realise that really I just want to write and that writing is probably where my future lies. Nevertheless, I am still considering the options, because it feels so good to have those options.
All the best to all of you
Louise x
Friday, 18 November 2011
How to Be a Woman by Caitlin Moran
Hi again
This title 'How to Be a Woman' by Caitlin Moran is one of eighteen books currently on my bedside table. I have just counted. Yesterday the pile appeared to be teetering, and I thought, 'That's odd, it's not long since I took a whole load of books out to the shed' (Paul built the shed several years ago for me to write in: I now have a corner and the kids have the rest for their toys).
Anyway. I have read eight of the books (they can go out to the shed now). I have partly read three (one of them I am reading in stages with my older son). The rest are just gathering dust.
But the reason I mentioned it is because my son noticed the Caitlin Moran one the other day. He looked at it. He is a good reader for his age, is at that stage where he suddenly reads stuff all over the place. And he looked mystified as he said, 'But you already know how to be a woman'.
So sweet. I just had to share that.
That is one of the books I haven't yet read, and I should. Trouble is, it has gone to the bottom of the pile because it has been so widely reviewed that I feel I don't really need to read it now - I have already got its measure. I just wrote my Poppy Shakespeare review - the first Amazon review I have done, which I can hardly believe - and then had to rewrite it because I had given the plot away in my first attempt.
I am definitely going to review every book I read now. And I will find it easy to start - I started keeping a record of what I had read and what I thought of them about a year ago (stopped after about six months, but there is still plenty in there to get me started). It is quite nice to see my name in print in a different place, and I enjoyed writing the Poppy Shakespeare review, although it was very brief in the end (once I had taken all the bits out that gave the story away).
Anyway. Hope you are all well and happy. More soon.
Louise x
This title 'How to Be a Woman' by Caitlin Moran is one of eighteen books currently on my bedside table. I have just counted. Yesterday the pile appeared to be teetering, and I thought, 'That's odd, it's not long since I took a whole load of books out to the shed' (Paul built the shed several years ago for me to write in: I now have a corner and the kids have the rest for their toys).
Anyway. I have read eight of the books (they can go out to the shed now). I have partly read three (one of them I am reading in stages with my older son). The rest are just gathering dust.
But the reason I mentioned it is because my son noticed the Caitlin Moran one the other day. He looked at it. He is a good reader for his age, is at that stage where he suddenly reads stuff all over the place. And he looked mystified as he said, 'But you already know how to be a woman'.
So sweet. I just had to share that.
That is one of the books I haven't yet read, and I should. Trouble is, it has gone to the bottom of the pile because it has been so widely reviewed that I feel I don't really need to read it now - I have already got its measure. I just wrote my Poppy Shakespeare review - the first Amazon review I have done, which I can hardly believe - and then had to rewrite it because I had given the plot away in my first attempt.
I am definitely going to review every book I read now. And I will find it easy to start - I started keeping a record of what I had read and what I thought of them about a year ago (stopped after about six months, but there is still plenty in there to get me started). It is quite nice to see my name in print in a different place, and I enjoyed writing the Poppy Shakespeare review, although it was very brief in the end (once I had taken all the bits out that gave the story away).
Anyway. Hope you are all well and happy. More soon.
Louise x
Benefits, Madness and Laughter (not necessarily in that order)
Hi everyone
I was thinking today, I have a bit of a death wish about being on benefits - the more I keep shouting about not wanting to be on them any more, the more chance someone is going to take them away. And they do provide a buffer against stress...but let's not go through all that again. I feel that change is on its way, and that it will be a Good Thing when it happens.
My girls (who keep their eyes and ears open so wide you would think they are in training for MI5) have cottoned on to the benefits thing. The older one was upset that I am on benefits - she said she hadn't realised we were so poor. The younger one is using it as a stick with which to poke me. We were messing around this evening, being silly, and she said, 'I wouldn't give up benefits if I was you. Because you are MAD!' Then she kept poking. 'In fact' she said, 'I think they should double them. Because you are SO MAD!' She was delighted with herself because I was laughing so much at her cheek, and I was just astounded, wondering where on earth it all comes from. She is nine years old! How did she get such an understanding of what makes people tick and of how the world works?
But it is good that I can laugh, and that I can be more open with my daughters. I have reassured my elder one that we are not in poverty, and not about to descend into it. When I finally stopped laughing, I told the little one she should have more respect, and more belief in her Mama - I am going to make it good in life, even though I may be taking the long route round. But a few short years ago I could not even have said the word 'Mad' out loud - now I can laugh at someone taking the mickey out of me for it. The shame has gone, and with it the fear, and it is only a matter of time before all the anxiety and other nonsense follows the rest of the unecessary emotions out of the door.
More soon
Louise x
I was thinking today, I have a bit of a death wish about being on benefits - the more I keep shouting about not wanting to be on them any more, the more chance someone is going to take them away. And they do provide a buffer against stress...but let's not go through all that again. I feel that change is on its way, and that it will be a Good Thing when it happens.
My girls (who keep their eyes and ears open so wide you would think they are in training for MI5) have cottoned on to the benefits thing. The older one was upset that I am on benefits - she said she hadn't realised we were so poor. The younger one is using it as a stick with which to poke me. We were messing around this evening, being silly, and she said, 'I wouldn't give up benefits if I was you. Because you are MAD!' Then she kept poking. 'In fact' she said, 'I think they should double them. Because you are SO MAD!' She was delighted with herself because I was laughing so much at her cheek, and I was just astounded, wondering where on earth it all comes from. She is nine years old! How did she get such an understanding of what makes people tick and of how the world works?
But it is good that I can laugh, and that I can be more open with my daughters. I have reassured my elder one that we are not in poverty, and not about to descend into it. When I finally stopped laughing, I told the little one she should have more respect, and more belief in her Mama - I am going to make it good in life, even though I may be taking the long route round. But a few short years ago I could not even have said the word 'Mad' out loud - now I can laugh at someone taking the mickey out of me for it. The shame has gone, and with it the fear, and it is only a matter of time before all the anxiety and other nonsense follows the rest of the unecessary emotions out of the door.
More soon
Louise x
Thursday, 17 November 2011
Poppy Shakespeare
Hi all
They were selling off some books at the Rethink AGM the other day, and I bought a couple. I had read the reviews for Poppy Shakespeare a while ago, and meant to get around to reading it sometime, so when I saw it for sale for just a pound I was delighted. It took me a few days to get around to starting it though, but when I did (yesterday) I was surprised at how good it is. It is unputdownable.
I suppose this is partly because I have spent some time in a day hospital, although it was quite unlike the one portrayed, or at least my experience of it was quite different. What is good about the book is that it is written from the perspective of a patient - a very messed-up one, one with (almost) the worst childhood imaginable, but one who knows the system, and who plays it. It is just so funny, but at the same time so awful. I can't remember finding anything so funny since the Adrian Mole books - but then I read those when I was a teenager, and identified with Adrian in a similar way.
But poor poor Poppy Shakespeare, a sane woman who somehow finds herself in the day hospital on a compulsory basis.... So it is heart-wrenching too. I am definitely going to write a review of this book as soon as I have finished it. And I am going to learn from it too - my book is humourous, but the humour tails off about a third into the book. Lightness of touch is definitely to be recommended.
Although of course P S is fiction, which makes a difference (although I do seem to remember reading that the author had some sort of insight into mental illness; if I recall wrongly I apologise profusely. You certainly would not think from the quality of the writing that this was the case. Which sounds really rude to those who have been mentally ill, including myself, but I am just trying to make the point that I am not being rude. Although if Clare Allen never had been ill or spent time inside a day hospital the book would be just too unkind for words, so she must have been....It would have been quicker if I just Googled the facts on the internet instead of speculating, but it's too late now. Well, it's not, but I'm not going to right now).
Anyway....I was actually a bit jealous of Clare Allen recently - I read that she was teaching an Arvon course. I would like to teach at Arvon one day - I reckoned when I was there about a year ago that I might achieve this goal in ten years' time, but this 'goal' may well be deluded. Having read (most of) her book, I would now love to take one of her courses - what a writer! She really has the hang of story telling, which still eludes me - most of my writing is still journalistic in tone. Now I am starting to wish that I had fictionalised my own book, but I am not sure if I could have done.
Poppy Shakespeare is so good I really had to tear myself away to write this blog post, and I am well aware that I should be doing housework and neither reading nor blogging. Hey ho.
Didn't get an interview for the Time to Change job, by the way. Applicants called for interview were due to be notified by email yesterday at the latest. I checked my email obsessively, most of the day, but there was nothing from Time to Change. Hey ho again.
Still want to get off benefits and into work, somehow. Reading Poppy Shakespeare makes it seem even more urgent. The big issue at the day hospital is the workings of the so-called 'Ministry of Madness' and the MAD money forms that patients have to fill out, around which their daily existence seems to hinge. It is cringeworthy. Anybody who hasn't read it yet really really should. I wonder if Clare Allen has written any more books? That I will Google.
So, do I have anything else to write about? Not particularly. I suppose I will put my efforts into starting up a Rethink group. It will keep me busy for now, and hopefully pave the way to employment somehow too. I will also plug on with the writing - because first and foremost a writer is what I am, even though sometimes other writers seem to be a lot better at it than me. Which is so not fair! (But is probably because they work harder at it).
Bye for now
Louise x
They were selling off some books at the Rethink AGM the other day, and I bought a couple. I had read the reviews for Poppy Shakespeare a while ago, and meant to get around to reading it sometime, so when I saw it for sale for just a pound I was delighted. It took me a few days to get around to starting it though, but when I did (yesterday) I was surprised at how good it is. It is unputdownable.
I suppose this is partly because I have spent some time in a day hospital, although it was quite unlike the one portrayed, or at least my experience of it was quite different. What is good about the book is that it is written from the perspective of a patient - a very messed-up one, one with (almost) the worst childhood imaginable, but one who knows the system, and who plays it. It is just so funny, but at the same time so awful. I can't remember finding anything so funny since the Adrian Mole books - but then I read those when I was a teenager, and identified with Adrian in a similar way.
But poor poor Poppy Shakespeare, a sane woman who somehow finds herself in the day hospital on a compulsory basis.... So it is heart-wrenching too. I am definitely going to write a review of this book as soon as I have finished it. And I am going to learn from it too - my book is humourous, but the humour tails off about a third into the book. Lightness of touch is definitely to be recommended.
Although of course P S is fiction, which makes a difference (although I do seem to remember reading that the author had some sort of insight into mental illness; if I recall wrongly I apologise profusely. You certainly would not think from the quality of the writing that this was the case. Which sounds really rude to those who have been mentally ill, including myself, but I am just trying to make the point that I am not being rude. Although if Clare Allen never had been ill or spent time inside a day hospital the book would be just too unkind for words, so she must have been....It would have been quicker if I just Googled the facts on the internet instead of speculating, but it's too late now. Well, it's not, but I'm not going to right now).
Anyway....I was actually a bit jealous of Clare Allen recently - I read that she was teaching an Arvon course. I would like to teach at Arvon one day - I reckoned when I was there about a year ago that I might achieve this goal in ten years' time, but this 'goal' may well be deluded. Having read (most of) her book, I would now love to take one of her courses - what a writer! She really has the hang of story telling, which still eludes me - most of my writing is still journalistic in tone. Now I am starting to wish that I had fictionalised my own book, but I am not sure if I could have done.
Poppy Shakespeare is so good I really had to tear myself away to write this blog post, and I am well aware that I should be doing housework and neither reading nor blogging. Hey ho.
Didn't get an interview for the Time to Change job, by the way. Applicants called for interview were due to be notified by email yesterday at the latest. I checked my email obsessively, most of the day, but there was nothing from Time to Change. Hey ho again.
Still want to get off benefits and into work, somehow. Reading Poppy Shakespeare makes it seem even more urgent. The big issue at the day hospital is the workings of the so-called 'Ministry of Madness' and the MAD money forms that patients have to fill out, around which their daily existence seems to hinge. It is cringeworthy. Anybody who hasn't read it yet really really should. I wonder if Clare Allen has written any more books? That I will Google.
So, do I have anything else to write about? Not particularly. I suppose I will put my efforts into starting up a Rethink group. It will keep me busy for now, and hopefully pave the way to employment somehow too. I will also plug on with the writing - because first and foremost a writer is what I am, even though sometimes other writers seem to be a lot better at it than me. Which is so not fair! (But is probably because they work harder at it).
Bye for now
Louise x
Wednesday, 16 November 2011
Another interesting blog
Hi again
This guy recovered, or as he prefers to term it, was cured from schizophrenia when he was thirty, which is now thirty years ago. So there is a wealth of experience here:
http://skybluecure.blogspot.com/search?updated-max=2006-04-19T22%3A36%3A00-06%3A00&max-results=2
I read a lot of it the other day, need to go back and finish.
He is completely well now, and I guess by his 'Skyblue' standards I am not quite there - he suffers from no anxieties for example, and I still do. But I do like to read someone who writes from the perspective that complete cure is possible - because belief that one can become better is essential in order to be able to do so. This is where psychiatrists are failing their patients most - in refusal to believe in them as complete human beings.
I want to make the point today that for all my attempts to write clearly on the subject of mental health, I am only speculating a lot of the time. I don't know a lot about schizophrenia really, except for my own experience of it, which I have analysed a lot over the years, and the experiences of others who were ill alongside me. I know, for example, of two men who made amazing recoveries, both of who attended the same day hospital as me. Both of them got better after they embarked on relationships with mental health nurses from the hospital - from this I conclude that the love of a good and strong person is a vital aid to recovery.
Also, I write about schizophrenia from the perspective of someone with a chaotic upbringing and very little or no family support. Therefore I cannot speak for the experiences of those who have had loving chidlhoods, except in so far as they have experimented with drugs such as cannabis, where their experience overlaps with my own. For this reason I may seem dismissive of family 'carers'. Rationally, I know that they are loving people, who want the best for those who they support. I can see this, and I understand it.
When I write about how families can sometimes hold a person back, I am personalising the issue. My mother is an alcoholic - I have always felt secure about the fact that she loves me (I think I would have completely disintegrated without this knowledge) but as a mother when I was growing up she was useless. I see her failings all too clearly now that I am a mother myself - I know how much attention children need, and how little I was given. I still love her though, and she is a good Granny to my kids.
After I became unwell, I became emotionally reliant on my sisters. I tried to cling to them - they had homes, children, they seemed secure. They led their lives successfully. I longed to learn from them. I couldn't let go, because I felt that I needed their approval, their validation, their love of me. It is only since I have had a family of my own that I have been able to move on properly - to approach the world from an adult perspective, to stop being so sensitive. I still have a way to go!
Another point that I wanted to make is about psychiatric drugs. I believe that they are over-prescribed, that people should only take them when they choose to do so and that they should be encouraged to believe that they can manage without them. Because they can. However, I never stopped taking any medication without the full knowledge, consent and monitoring of a psychiatrist. I would have been too scared to do anything else.
So really I was quite fairly treated by the mental health system - except when I was sectioned. I was lucky, though, because I could have been swallowed up by the system - it was only my longing for a child, and my discovery that the drugs had made me infertile, that helped me to find my way out. The diagnosis nearly did for me! It does upset me when I see people who have been on medication for many years, and who are basically walking shells, but I don't know all the circumstances behind their stories. I only suspect that things could have, and should have, been different for them.
Anyway, that is enough about me. I am only rattling on about this because I have embarked on my book about recovery, so the matters of the hows and whys are in the forefront of my mind. I am really enjoying the writing process this time - writing about mental health in a positive way is very cathartic!
Bye for now
Louise
This guy recovered, or as he prefers to term it, was cured from schizophrenia when he was thirty, which is now thirty years ago. So there is a wealth of experience here:
http://skybluecure.blogspot.com/search?updated-max=2006-04-19T22%3A36%3A00-06%3A00&max-results=2
I read a lot of it the other day, need to go back and finish.
He is completely well now, and I guess by his 'Skyblue' standards I am not quite there - he suffers from no anxieties for example, and I still do. But I do like to read someone who writes from the perspective that complete cure is possible - because belief that one can become better is essential in order to be able to do so. This is where psychiatrists are failing their patients most - in refusal to believe in them as complete human beings.
I want to make the point today that for all my attempts to write clearly on the subject of mental health, I am only speculating a lot of the time. I don't know a lot about schizophrenia really, except for my own experience of it, which I have analysed a lot over the years, and the experiences of others who were ill alongside me. I know, for example, of two men who made amazing recoveries, both of who attended the same day hospital as me. Both of them got better after they embarked on relationships with mental health nurses from the hospital - from this I conclude that the love of a good and strong person is a vital aid to recovery.
Also, I write about schizophrenia from the perspective of someone with a chaotic upbringing and very little or no family support. Therefore I cannot speak for the experiences of those who have had loving chidlhoods, except in so far as they have experimented with drugs such as cannabis, where their experience overlaps with my own. For this reason I may seem dismissive of family 'carers'. Rationally, I know that they are loving people, who want the best for those who they support. I can see this, and I understand it.
When I write about how families can sometimes hold a person back, I am personalising the issue. My mother is an alcoholic - I have always felt secure about the fact that she loves me (I think I would have completely disintegrated without this knowledge) but as a mother when I was growing up she was useless. I see her failings all too clearly now that I am a mother myself - I know how much attention children need, and how little I was given. I still love her though, and she is a good Granny to my kids.
After I became unwell, I became emotionally reliant on my sisters. I tried to cling to them - they had homes, children, they seemed secure. They led their lives successfully. I longed to learn from them. I couldn't let go, because I felt that I needed their approval, their validation, their love of me. It is only since I have had a family of my own that I have been able to move on properly - to approach the world from an adult perspective, to stop being so sensitive. I still have a way to go!
Another point that I wanted to make is about psychiatric drugs. I believe that they are over-prescribed, that people should only take them when they choose to do so and that they should be encouraged to believe that they can manage without them. Because they can. However, I never stopped taking any medication without the full knowledge, consent and monitoring of a psychiatrist. I would have been too scared to do anything else.
So really I was quite fairly treated by the mental health system - except when I was sectioned. I was lucky, though, because I could have been swallowed up by the system - it was only my longing for a child, and my discovery that the drugs had made me infertile, that helped me to find my way out. The diagnosis nearly did for me! It does upset me when I see people who have been on medication for many years, and who are basically walking shells, but I don't know all the circumstances behind their stories. I only suspect that things could have, and should have, been different for them.
Anyway, that is enough about me. I am only rattling on about this because I have embarked on my book about recovery, so the matters of the hows and whys are in the forefront of my mind. I am really enjoying the writing process this time - writing about mental health in a positive way is very cathartic!
Bye for now
Louise
Monday, 14 November 2011
The Schizophrenia Commission
Hi again
At the Rethink AGM on Saturday, Paul and I met Terry Bowyer, who has a diagnosis of schizophrenia and who has been invited to sit on the Schizophrenia Commission. He is collecting recovery stories for the consideration of the Commission, and he asked me to send mine in.
Sorry, if it seems self-aggrandizing to publish it here. It represents several hours of work, which is why I am doing so. Not because I think it is brilliant or anything! Also, I decided on Saturday to go ahead with an idea that I have had for a new book on the subject of recovery from schizophrenia. This statement is my starting point. I have no idea how many thousand words it contains, because I forgot to do a word count, but I know that I will have many many thousands more to go before I am finished. It feels good to be on a mission again.
Louise x
At the Rethink AGM on Saturday, Paul and I met Terry Bowyer, who has a diagnosis of schizophrenia and who has been invited to sit on the Schizophrenia Commission. He is collecting recovery stories for the consideration of the Commission, and he asked me to send mine in.
Sorry, if it seems self-aggrandizing to publish it here. It represents several hours of work, which is why I am doing so. Not because I think it is brilliant or anything! Also, I decided on Saturday to go ahead with an idea that I have had for a new book on the subject of recovery from schizophrenia. This statement is my starting point. I have no idea how many thousand words it contains, because I forgot to do a word count, but I know that I will have many many thousands more to go before I am finished. It feels good to be on a mission again.
Louise x
Recovery
I am pleased to have been offered this chance to give evidence to the Schizophrenia Commission about my experience of diagnosis with, and recovery from, schizophrenia.
I use the term 'recovery' in its fullest sense. I have been free of medication and free of symptoms for twelve years now. I have a husband, a home, and four young children – all things that I never thought would be possible at the age of twenty-five when I was given the diagnosis. At that time I accepted what I was told; that the outlook was bleak in the extreme, that I would get worse as I became older and that I would have to be on medication for the rest of my life.
I do suffer from anxiety and stress, to some degree, but I know very few people who do not. I do not hear voices, or suffer from delusions or hallucinations, and I have only had these experiences when I have been in the throes of psychosis. The last of these occasions was twelve and a half years ago. I know that I am still classed as 'schizophrenic' in medical terms, but do not consider this to be a true reflection of the facts. Perhaps this is something the Commission could consider – that full recovery from serious mental illness is a reality. In this way, hope could be offered to those given the diagnosis.
In any case, I will set out first a few facts about my history. I was an extremely shy and nervous child. I had a chaotic upbringing – my mother was an alcoholic and my father a gambler. He was also a very volatile character, and extremely verbally abusive. My only happy years were the three I spent at boarding school, Roedean in Brighton, but I had to leave when I was thirteen because of lack of funds. (The school offered me an 'Exhibition', under the terms of which I could remain indefinitely with no fees payable (I was an outstanding student) but my father refused this offer because it was not extended to my older sister, so he felt that it was unfair).
I fell into bad company and bad habits as a teenager – I was extremely unhappy and isolated. I left home at sixteen, lived in various bedsits and smoked a lot of cannabis, but managed to get through my A levels and win a place to study Law at the University of Southampton. I found though, that with no social skills whatsoever and with very low self esteem, I floundered. I had a breakdown when I was nineteen, was sectioned, and spent three months in a mental hospital, St Anns in Poole, Dorset.
The treatment I received in mental hospital was brutal. Forced medication should be outlawed in my opinion, or saved for the most extreme cases; those who have been violent or suicidal. I was neither. The emphasis in hospital was on containment, not understanding, and this amounted to an inhumane system, notwithstanding the good intentions of some members of staff.
When I finally left St Anns I was keen to get on with life. I stopped taking medication gradually, under the supervision of a psychiatrist who I saw as an outpatient. I went back to University and gained an Upper Second Class LLB. However, I was still extremely nervous and insecure. I found it almost impossible to relax in company, although I longed to be more sociable. I felt like an outsider. By the time I graduated, although I was academically qualified to do a professional job, I knew that such work was out of my reach.
Instead I took on work as a waitress and cleaner (I had worked in the catering department at the University throughout my studies, something that was very unusual at that University at that time. I had to make ends meet during the holidays – when most people went home to their families I still had to pay for rent and buy food). My mental health deteriorated without me realising – I started to smoke cigarettes again, then cannabis, and before I knew it I was sectioned again and back in St Anns.
This time I did another three months' stint. I hated everything about that place – the forced medication, the atmosphere of fear, the mixed wards, the humiliation of finding myself in such a situation once again. But by the time I left I was still very weak mentally, and when a psychiatric nurse visited me at home and offered me the opportunity to attend a day hospital, I accepted through lack of any other options. At least this way, I could claim benefits to pay the rent on my flat, and so I would survive.
I was now twenty-five, and it was at the day hospital that my life changed. I was told that schizophrenia had first been diagnosed when I was nineteen, at the time of the first breakdown, but that it had not been thought appropriate to tell me then. Apparently the condition was confirmed by my second breakdown. Although I was confused at the lack of proof of the illness – there was (and remains) no physical test – I was told that there was no chance of recovery unless I accepted the diagnosis. Then, in a room filled with psychiatrists, psychologists, and mental health nurses, I was told that my life was effectively over. They spelled out that I would have to take medication for the rest of my life, and that I would get worse as I got older.
I know I mentioned this earlier in this document; that is because in my opinion the thing that most hindered my recovery was this dismal prognosis. I respected medical opinion, and I believed it. I started smoking again (by a huge effort of willpower I had stopped in the St Anns). I ate constantly – meals were free and plentiful in the day hospital, and my weight and general appearance seemed to be completely unimportant in the context of the fact that I was now a SCHIZOPHRENIC. I gave up hope. For years I took my medication, travelled to the day hospital and basically vegetated. To be fair, there was some effort made at the day hospital towards education – we were told that schizophrenics are more of a danger to themselves than to others, for example, but nothing detracted from my fear of what I had become, and what I might do as a SCHIZOPHRENIC.
After two or three years of this, when I finally began to recover, the impetus came from somewhere within myself. Somehow, I decided that I had had enough. I saw my sisters thriving, with their jobs and their young families, and I wanted what they had – I didn't want to write myself off any more. I didn't want to be fat, so I began to control my food intake. I decided to start exercising – I walked to the local pool every morning and swam. I was offered a flat by Bournemouth Churches Housing Association – the wife of the manager was a receptionist at the day hospital and she put in a word for me. This gave me some self-respect – it was a decent home that I could be proud of and where I felt safe.
I began to work again, as a chambermaid in a local hotel. It was menial and poorly paid, but it kept me active and was as stress-free as a job could be. Eventually I found a better job, in a call centre. Here I sent in an article to the internal newspaper, which resulted in some work setting up a newsletter for the Home Insurance department, and writing some internal communications documents for the call centre manager. I realised my vocation – I was a writer.
It took a while for things to settle properly. I met my husband, and we had a child, but I had my third and final breakdown after she was born. I was under considerable stress – my longed for child was born a month early and was taken directly to the neonatal intensive care unit. But the breakdown was bad – I was sectioned again. It was a huge shock to my system. and was regarded by everyone, including myself, as final proof of the schizophrenia.
I could not give in to the illness though, as I had done before, because I had my child to think about. As soon as I was released from hospital my husband returned to work and I assumed full care of our daughter. I looked after her diligently – played with her constantly, took her for long walks, and to mother and toddler groups. I was determined that she would grow up confident, so I learned to start and to share conversations with other Mums. And it worked! My daughter grew into a perfect little child, and my husband and I decided to cement out union with another. We were advised against it, but fortunately this pregnancy and birth was straightforward, and I remained well afterwards. Two years later we had another child, and eventually our fourth and last, and still I did not require medication. I gradually became more confident of my ability to cope with life.
I realised over time that if I kept my life calm and quiet, I would thrive and so would my children. I am busy these days, and my life is very child centred. My children are growing up to be incredibly smart and grounded, and the pride I take in them has given me the belief in myself that I always lacked. I have a place in society now, and I carry out my daily business as a full-time mother in much the same manner as those around me.
I now recognise and respond to signs of stress; for example if I have difficulty sleeping I make sure that I step back, calm down. I eat well and regularly. I never let myself become agitated to the point where I feel I could lose control. I bear in mind that what is important in life is my family, and that is where I direct my efforts, because I know that without me the home that my husband and I have built would crumble.
Benefits have helped, by removing financial stresses from the picture. I have been in receipt of sickness benefit for many years, but I am now at the point where I want to move on from this. It is hard to get better when one is paid to be ill; but it is hard to give up benefits when they provide a buffer from stress. Perhaps this is an issue that the Commission could address – that there could be more emphasis on provision of paid, therapeutic work for the mentally ill.
I consider myself very fortunate to be able to manage without medication. I think that if I had taken long term medication I would not be as well as I am now. I believe that medication should be used only when necessary, and only when people agree to take it. Mental illness can be dealt with in many other ways, and anti-psychotic medications have many extremely damaging side effects. There have been times in the last twelve years or so when I have wanted some magic pill to relieve the effects of stress and anxiety in my mind – but by exercising, eating and sleeping well, staying calm and quiet, confiding in friends and so on, I have managed without it, and I believe that this has made me a more resilient person.
It has not been a straightforward journey to recovery; the stigma of the condition, the very word 'Schizophrenia' has been a cause of shame and has made me hide my illness for many years, and has certainly contributed to my low self-esteem. The campaign of the charity 'Time to Change' helped here – they gave me the courage to speak out. I would welcome a change in the diagnosis – for many years my GP claimed not to be able to spell the word 'schizophrenia' and wrote 'nervous debility' on my sick notes instead. I wish I had taken the hint.
I believe that if those who have recovered could speak to those who have been recently diagnosed – if I could say, for example, 'I have suffered exactly what you are going through – it is truly awful, but things will improve', this could only be a good thing. To this end, peer support networks should be strengthened, so that hope and inspiration for the future can be passed on to sufferers.
Another point I would like to make is that while carers of the mentally ill are naturally concerned for their well-being, they may disenfranchise the patient. In my own case, my family, although I love them, find it hard to accept even now that I am now healed and as well as they are – they persist in seeing me as vulnerable, as schizophrenic. We can become trapped in others' perceptions of us and find it hard to move on – in this way, to depend on the care of one's family may hinder complete recovery, as the long-term provision of benefit may- although of course it would be far worse to leave the mentally ill alone and destitute. Schizophrenics need to be protected from the adversities of life, but also taught to cope with them.
In my case, I feel the lack of constructive support from my family was actually to my benefit – I have been forced to find my own way through my difficulties and my achievements are more tangible as a result. However, without the support of my husband, I doubt whether I would ever have got better. In the words of Karl Jung, 'A schizophrenic is no longer a schizophrenic when he feels understood by somebody else'. All of us deserve that somebody.
I have experienced some extremely stressful events over the years; my mother, who I adore, had throat cancer, my eldest child was very ill in hospital with a streptococcal infection. But I did not break down in response – and this in itself has given me confidence. I see psychosis as the mind's way of escaping from reality, when reality becomes so awful that one cannot cope. In that way it is a protective device. But the final step to recovery for me has been accepting that I am now completely healed; that I am no longer any more vulnerable than anyone else, that anyone could break down given the circumstances I found myself in, and that I am in fact now much stronger as a result of my experiences. I have written a book about my life so far, 'Surviving Schizophrenia: A Tale of Sound and Fury' under my maiden name, Louise Gillett, and am now embarking on another book detailing the steps that led me to recovery.
I wish the Schizophrenia Commission all the best in their enquiry, and put myself at their disposal should they require any further information.
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