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EXPERIENCES IN MENTAL HEALTH CARING |
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KITH AND KIN (Sixties Press 2004)
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SCHIZOPHRENIA: A MOTHER’S STORY BY GEORGINA WAKEFIELD THE BEGINNING This is a story about the immense courage shown by my son Christian. It is also a story of hope; a 10-year-journey through mental illness, taken not only by my son, but also by his family who love him dearly. I can honestly say, hand on heart, that every word that you read is true. It will appear from these poems that, what I call the crisis times, are the worst part of this illness, but, on reflection, I think it is the sheer relentlessness of schizophrenia that is the worst part of all. It is almost cunning the way that it lulls you into a false sense of security, only to be followed time and again by bitter disappointment when the monster decides to rear it's ugly head again. |
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Christian is either plagued by his thoughts, moods or feelings and this, in turn, effects, or should I say, 'infects' his loved ones. There are things that will always remain private and that I would not write about, but I cannot think of a life event that would be much harder to deal with. This illness affects the very core of the sufferer, as I said before. Thoughts, moods, feelings - in other words, the things that make us the people we are. Two of the clients that have lived with Chris for the past 24 months (Paul and Sid) are so very kind to him. They all look after each other. When Chris goes back to Weymarks on Sunday night, they are waiting to welcome him back. Humility comes naturally to these gentle souls. To develop this condition at any age is devastating, but I feel it is worse if you are only fifteen years old. Looking back, this is about the age that Christian started to show signs of it. To develop it so young makes recovery all the more difficult, as he had no experience of work, socialising, driving etc. I get frustrated about the ignorance attached to mental illness. A supervisor at work asked me, "how did he catch it?", as if it were an airborne virus. In retrospect, I should have touched her arm and said "just like that". I have also been asked if my son is violent. People just assume that people with this illness are axe-wielding maniacs, probably one of the reasons why I could not say schizophrenia for years. All the sufferers I have met have been the gentlest souls. It's almost as if they are too good for this world. If you listen to the words of "Vincent", the singer says "This world was never made for one as beautiful as you". Vincent Van Gogh was a sufferer. I love this song as the words are very true. Where do I start? For me this is the hardest part, as I find it much easier to write in verse. Before Chris became ill, I would write poems (mostly for my family) and always funny. I would never have dreamed that this could happen to us, but that is life. No one ever knows what the future holds and there are times when I think that is just as well. Looking back to Christian's childhood, I can see that he always had problems, although he was the best baby you could ever wish for. He slept right through the night from the day he was born. We called him smiler because he would beam all the time. As he grew older, he would be difficult, especially after he had a haircut. My sister-in-law, who is a hairdresser would often say that when we have our hair cut, it can sensitise us and I suppose, as Chris was highly sensitive, it would affect him more than most people. When we took him away on holiday, he would keep on all week about going back home. Sometimes he would run away. He played up so much when we took him to Wales that I took a photo of Paul and Stephen holding him head first over a cow pat. Again, this was after he kept running away. The signs were there; we just did not see them. When he was 15 years old, his history teacher (Mr Callow) phone me to say that something was wrong with Chris, but he did not know what it was. He said that his concentration had become very poor and that the interest he had always shown in history was diminishing at an alarming rate. Although I was worried about it, I really thought it was just a phase that would pass, eventually. His behaviour also changed, but very gradually; he became withdrawn, argumentative and very stroppy. He would sometimes stay away from home for days and nights on end and, when he finally came back, would offer no explanation as to where he had been. Paul threw him out a couple of times. One time he came back again, after a few days staying God knows where, and stood in the middle of the in torrential rain. For over an hour the rain was hitting the ground and bouncing back up and he just stood there, his long, dark hair stuck to his face, absolutely saturated. He just didn't seem to know what he was doing or where he was going. Sometimes, I would cry and say, "Please don't make him go, he is ill." Somehow, deep down I knew, but because his dad was a rebellious teenager, we would always come to the conclusion that he was his father’s son. I do not blame Paul or myself; it was such an easy mistake to make. It came on so insidiously, it was really hard to know what was happening. When he started working at Fords, Paul said "it is the first day of your apprenticeship tomorrow, be in at a reasonable time, no later than 11.30pm. Paul was sitting up by the window when he came home at 3.30am. He really hated Fords. He used to say "you don't see me on those buses, you don't know how I feel." Still we kept praying that he would come to his senses. Finally, after lots of time off and lots of phone calls telling packs of lies about stomach upset, flu etc., we gave in and he left. There followed various other jobs and many more problems. When Paul got him one job at Palmers (trainee profile drawer) he had been o work for over a year. He had no friends because he had just made up his mind one day that they were just not his type of people and he stopped seeing them. He was elated when Paul came home and said "I've got a job for you, you start Monday". At first he absolutely excelled in his work. The two bosses could hardly believe how well he was doing. They said they had never seen anyone learn so quickly. Then after about four weeks, the cracks started to show and he would lose the plot and if they asked him to do a drawing, invariably, he would get things completely wrong. Nicky Palmer would go to see Paul and say "I really do not know what is wrong with Chris, but something is going terribly wrong somewhere". He would sometimes stay up all night trying to work out why he couldn't get things right. One morning at 6.00am, I caught him desperately trying to get a profile drawing right, yet again. I made him a mug of tea, which he knocked over the drawing and he blamed me for it. Everything was my fault. Around this time, we found out that he believed his old mates were going to break into the Portakabin and ransack the place. He also thought they might hurt me or his dad. Paranoia was well and truly setting in. We foolishly took him to Devon with my sister, brother-in-law and my mum. He got worse by the day. He was reading geometry books upside down, so preoccupied that he walked out in front of cars. He went and had his hair cut in the same style as Andy Mars (a work colleague). He even bought a pair of John Lennon glasses simply because Andy wore them. I think he felt that if he looked like Andy, he would also be able to act and work like him. While on holiday, we tried to get him to agree to see a psychiatrist when we got home, but to no avail. He told us we were mad and there was absolutely nothing wrong with him at all. As you will see from the first poem "In the Beginning" this proved to be far harder that we expected. At this point, I would like to say that, apart from a couple of isolated incidents, Christian's care under the NHS has been excellent. The staff at Weymarks are "Simply the Best". It is such a shame that 5% have let the other 95% of these dedicated people down. I have been told that writing about life's experiences is very therapeutic. It is only now that I can see why; it has taken roughly four weeks to write all the poems, but I have been up day and night. Sometimes I would wake at 3am with the strongest compulsion to write it all down. Poor Paul was worried sick. He thought I was becoming manic. I would write on anything I could lay my hands on. My paperwork was in the dresser in my bedroom. Rather than disturb Paul, I would go in to the lounge and find old birthday cards, which enabled me to write it all down and re-copy it the next day. I loved writing during the night. It was so very peaceful and I loved the quiet. No disturbances from anything or anybody. It was the most amazing experience, as if somebody or something had taken control of my hand and was literally guiding it over the paper. Even if I had been awake for three or four hours, I would go back to bed and go straight to sleep, something I have never been able to do in my life before. My mum has always said that the one thing she always wanted to do in her life was to write a book. She was very pleased that I was going to. I wanted to say "decided" to write one, but I did not decide to do it, I did not have a choice in the matter. I can honestly say that this has come as an utter shock to me. If anyone had said that I would write a book, I would have laughed. I've never had an urge to write, but I think that perhaps I have been driven by the strongest emotion of all - a mother's love for her child. More than anything, I hope that this book provides an insight into a very tragic life event. When my son first became ill and I read every book I could to find out about mental illness, I scoured bookshops to find a book that had been written from a family's point of view, but to no avail. If I manage to get it published, perhaps it will help other families who would like to know just what it is they will be facing. Maybe it will bring some comfort to people just knowing that they are not alone and that there is light at the end of their long dark tunnel. I also hope that professional people read it and they may be helped by seeing things from an entirely different angle. It's so hard for all concerned because the nurses know what's best, but, inevitably, feelings get in the way and parents can't always carry out what's best. I really do not want people to think that, because of all the things that happened between 1st June and 1st July 1999, i.e., meeting Dr Reveley and changing to Clozaril, I think my son will miraculously recover one day. I do not. But I do think that he will slowly improve and that he will go on to a better way of life. I am sure that I can start to help him now, whereas, for the past nine years, I feel that I have probably hindered his recovery (not consciously of course) by being too kind and too loving. All I hope is that this work may help some other families who are going through this nightmare. I pray that our story will give them the one thing that they will needthe most—Hope.
THE STRUGGLE The beginning is about the struggle I had to get my GP to send a psychiatrist to see Chris who had, by now, totally lost sight of reality, so much so that if we dared suggest getting him some help he would say "what for? It's you that need the doctor, not me". My GP said that before he could intervene Chris had to get to the stage that he was a danger to either himself or somebody else. When we went to Devon, his thoughts were so muddled that he would walk out in front of cars; a couple of times Paul had pull him back onto the pavement. At the end of the day, how dangerous must things be? It's absolutely terrifying when you see how mentally ill a person is but there's nothing you can do to get help until, of course, something terrible happens. During the onset of schizophrenia, Chris decided that he'd like to learn some basic office skills. This was after he'd left Fords and was about 17 years old. He started a course in Rectory Road, Grays. While Christian was struggling to do this course, we received a phone call from his tutor to say that she could see that he had problems and that he seemed unable to concentrate on even the simplest of tasks. She said that they were in touch with an excellent psychotherapist named Jim Cook. Jim had previously been a professional football coach and had, in actual fact, coached Paul Gascoigne. Jim said that Gazza was an extremely sensitive young man and that, in his opinion, he was heading for emotional problems later in life as he didn't think that Gazza would cope with fame very well at all. Jim Cook tried very hard to help Chris, but of course we were all unaware that he was suffering from the onset of a very serious mental illness. Consequently, things only got worse. When I paid my second visit to my voicing my GP voicing concerns, he was horrified that Jim Cook had been trying to help Chris. He said that we'd probably made the situation ten times worse allowing the counselling sessions, but of course we were so naive back then that we did not know what he was so concerned about. After all, we were only trying to get some help for a young man who was so very confused and distraught; again this was due to lack of any understanding on our part. We would never have consciously made matters worse. We were just desperate for some help, so any help that we were offered we were very thankful for. While attending the classes, Chris met a lad from Tilbury who had learning difficulties. He was very keen on motorbikes and Chris decided he would like to buy a trials bike. They went to the other side of London by train and his friend drove back with Chris on the back. Every time he went out on it (after very little tuition in spite of our pleas) we'd wait for a phone call. He insisted that it helped him to think straight and when he was driving he said it blew all his troubles away. We can see now that he was trying anything that would give him some temporary relief from his ever racing mind. Inevitably, at 9pm one Friday night, we received a phone call from Basildon Hospital to say that he'd been involved in an accident. He'd been travelling down the A128 towards Brentwood when a car pulled out of Plough lane. Chris went over the top of the car and ended up minus his crash helmet on the other side of the road with a gash in his ankle requiring 14 stitches. The police said that it was a miracle that nothing was coming the other way. The car driver admitted liability and was charged on two counts and duly fined. When we got to the hospital, Chris showed absolutely no emotion at all and didn't know what all the fuss was about. As we knew then how unwell he was, we were just grateful that he hadn't been badly injured or killed and had vowed never to ride the bike again. We did, in fact, feel that we'd got off lightly due to the seriousness of the ever worsening situation we were all in. A week before we were at a wedding reception and as always we rang Stephen at about 9.30pm to see if Chris was OK. Steve said, "Not really mum, he's stranded at a petrol station in South Benfleet, he's just filled his bike up with diesel and I'm on my way to pick him up" As you can imagine when he had the accident, we were by then relieved and we still feel we all got off very lightly. I can remember Paul saying on the way back from hospital, "what next?" Four weeks later we were visiting my mum when Chris finally broke down and we said "Thank God" thinking that now we'll get some help and he'll very soon be right back to normal. Little did we know that this was just "The Beginning."
BIONIC MAN When Chris finally broke down, he said that he'd wanted to tell us that things were going wrong for a long time, but he somehow knew that it was serious and hadn't wanted to worry us. When he was about seven years old, we bought him a bionic man and he said that was how he felt, as if he'd fallen apart, but the insight Christian gained regarding his illness, eventually, would be a saviour to him. I've been told by various nurses that it would be his saviour and of course I understand what they mean, but it must be hard when you know how much better life would be had this not happened.
THE SON WE USED TO KNOW This section is about the period that Chris was put on the depot injections. When we got to see Dr Lowe, he told us that he was putting Christian on a course of injections that would help him. Looking back I can see that he has never really been the same from that day to this. This is not a complaint, as we know it had to be done, but we do feel that someone should have talked to us in depth about the power of these antipsychotic drugs. For years I can see now that I really thought that he would wake one day and it would all be back to normal again. Of course, the advice given to me by the nurses was all good, positive stuff, but I felt far too ill and desolate to go to art classes. I suppose to a lot of people it's hard to understand that my only saviour has been writing this book and they must be thinking "my God, you'd think that would be the last thing she'd want to write about or even think about. But it has helped me so much. I suppose it depends on the person and there are probably lots of people who have been distracted from their problems by doing art classes or some other hobby. I think my need has been to help other people because I know the depths of the sadness that they will be going through. Perhaps by reading our story, they won't feel quite so alone. One of the hardest parts of all is trying to make people understand what it's like to just get on with your life. I do know that every one says it with the best intentions. Christian's CPN was always saying, "you worrying won't change the situation", "you'll make yourself ill", "take up some hobbies", "get out more". I could go on and on. I was always very aware of all of this, but actually putting it into practice is another story. I can honestly say that there is nothing that can distract me from my son's plight. Writing is my saviour. Putting it all on to paper has helped me in a way that is impossible to explain. I've actually had people say to me "you'll make yourself ill reliving all that again", but I can't make them see that it works in reverse and, just like a huge painful boil, once it’s burst you feel relief.
STAND IN THE CORNER Before we left for Sunnyside, Chris was sick outside Jim's house. Steve had lent me his car to take him for his depot. As he was on strong medication, he would shake a lot (it takes ages for people to be able to tolerate these drugs). Chris and I sat opposite his therapist and CPN. Behind us were two male social workers. One was aged around 30 years the other was a bit older. I was completely aghast when the CPN suggested Chris drop his trousers in front of two men. Once they explained, I understood the reasons behind it, but I wish I had been pre-warned, as it would not have been such a shock. I felt, and still feel, that he wasn’t being treated with respect and didnity and people with his illness deserve a lot of respect and dignity, in fact, I would say that it is the very least that they deserve.
A TRIP TO DYSTONIA A dystonic reaction is a very frightening and painful experience, both for the patient and for the people witnessing it. Dystonia is painful, physically and emotionally. I can honestly say that, before this happened, we'd never been warned that it was a possibility. I've never since been told that the odds that it may happen are extremely high and we feel very angry that no-one even thought to mention it to us and at least we would have known what was going on and had some idea of what to do. The GP who finally came out to see our son was arrogant and rude, and showed absolutely no compassion. The first time we rang, he refused to come out even though I pleaded with him. All we could do was watch Christian whose body was contorted. He was so frightened. When he finally came, he told us to get him in our car and take him to A&E at Basildon where they would zap him. When I enquired what zap him meant, he said "They'll give him an injection which will go straight to his brain and release the dystonia. Thank god Stephen was there to hold onto him, as he kept trying to open the car door and get out. I posted a letter and a poem to the doctor five years after it happpened in the hope that I wouldn't feel so angry and hurt. All I can say is it helped. I’d decided to call the poem "A Holiday and A Nightmare", but Stephen said “there’s a place in Russia called Estonia" and suggested calling it 'A Trip to Dystonia" Last night I was having a conversation with a friend of mine whose son has the same illness. I was reading this poem to her over the phone when she suddenly said "My God, so that's what it was". She then explained that she went to see her son in Oldchurch Hospital following a suicide attempt and he was lying in a cot twisted up. She frantically called a nurse who said "oh, he’s been like that for ages, don't worry he's probably putting it on". We were' both horrified Not only was she completely in the dark about what was wrong with her son , but a nurse had accused him of acting it out. In Anne Deveson's book, “Tell Me I’m Here", her experience of a dystonic reaction was very different from my friend's and mine. She took her child to hospital and said the young doctor who saw him was very kind. He said to Jonathon "that must be painful and distressing". She said those few kind words helped so much and this is really all that's needed. A small show of compassion can go such a long way. When you're faced with something as horrific as this, just a few words spoken in the right way can make an enormous difference. My memory of that night is as vivid as ever and even though I wrote the GP a letter and sent him the poem and, of course, got a reply from him five years on, I'm still angry.
One Carer’s Story - Barry Tebb Schizophrenia - A Carer’s Journal - Mike Schizophrenia – A Mother’s Story – Georgina Wakefield My Journey Of Sadness – Stan Hagon The Voice Of Carers – Amanda Cummin Yemeni Carers’ Stories – Debjani Chaterjee Beyond Our Reach, But Not Our Love – Brian D’arcy Carry On Caring – Emily Machin & Lucy Machin Enigma And Other Poems - Georgina Wakefield Killingbeck Drive – Brenda Williams Searching The Beyond And Other Poems – Daisy Abey Sharp Edge – Daisy Abey The Long Good Bye – Barry Tebb Looking Back – Barry Tebb Nameless In Camden – Brenda Williams Autobiography – Simon Jenner The Sick Image Of My Father Fades – John Horder Are You A Carer? Caring About Carers
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