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Personal experience of lifelong illness 

Personal experience of lifelong illness
Chapter:
Personal experience of lifelong illness
Author(s):

Sue Green

DOI:
10.1093/med/9780199644957.003.0047
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My problems started when I was about 13, more than 60 years ago. I was at the village school and very successful at sport, but even as this success came my way, wicked and disturbed thoughts started to come into my head. If I heard about a crime on the news I would tell my mother I thought I had done it; if anyone got an illness, I believed I had it; if anyone committed a murder, I’d done it; if anyone had a road accident, I’d caused it. It happened every day. After a bit it got to the stage where I used to go up the road to the police station and they informed my GP.

One day I went to see my doctor because I was worried I was losing my hair. He made me an appointment to go to a dermatologist. I remember the day so clearly. It was a Friday afternoon and I was cycling to the hospital. There were two young children walking along the road and when I saw them I started to worry that I had harmed them. I kept looking round and I kept pedalling. I could not get to the hospital quickly enough. When I got there I told the dermatologist about these worries, not about my hair. That had gone out of the window. Before I knew anything he had security there. They put me into an ambulance, took my bike and everything, and I was whisked off to the psychiatric hospital. No one explained or went into details. I would have been about 15 years old.

I was taken up old concrete steps onto a wooden floor. There were all these iron cages which I learned were padded cells. They were lined with the heating in the roof. I had to take all my clothes off and was stood there naked. I did not say anything. The nurses came and helped me put on a big white sheet with sleeves cut in it. I sat in a cell with just a chair and table. I did not want to tell my parents. I thought I would soon come home but really I did not know what to think.

They got in touch with my parents and found out where I lived. One sister told me my bike was safe. I was pleased about that, but I asked ‘What am I doing here?’ She said, ‘Well, it is because of the circumstances you came here. We have to sort that out before we do anything.’ But it went on for months, for years. In the end I was in the cell for about 18 months. I was stunned.

In the evenings they would come and push two cages together. The woman in the next cell used to scream her head off. She was a little older that me. It was the first time I’d seen a naked lady. We had these trolleys with red blankets on; they would line you up, about 12 of you, and come round with a bottle. They would make you drink it. It was this thick black horrible stuff, that knocked you right out. In the morning we went two by two and were put into a shower room. They had a spray from the ceiling and sprayed you down about four at a time. There was no privacy, none at all.

After we had washed we were put in a short night-dress again, even during the day. Mostly we only came out of the cells to eat and wash. In the summer they used to take us for walks. There were more staff than there were patients, but we were still in the old gowns, tied up. We weren’t allowed proper clothes or underwear or anything like that.

After a little while I got used to it and it was not quite so bad, but I still did not know why it was happening. I still did not understand why I was there. The nurses were in their 30s, perhaps with sons or daughters of my age. They seemed to feel sorry for me and made me as comfortable as possible. They were kind and I was never ill-treated but I didn’t know what was happening; I was lost. I can’t explain how severe it was. As days went on, some of the nurses used to bring in books that their children had had. However, I was still spending most of the day on my own in the padded cell. I had had no treatment and no one explained. I think at first they thought I had really committed an offence, but once you were there you were forgotten about.

Things went on like this until a new doctor arrived and then things changed a lot. This doctor wanted to know about us. He went from one end of the ward to the other until he came to me and talked to me. The nurses said, ‘The new doctor will help you,’ and they lifted my spirits a bit with that. One day shortly afterwards, two or three administrators came. They had got me a case and a load of new clothes. I got dressed normally and moved to a new ward, but when I got there I was put in pyjamas and into bed. I was back to square one. I thought, ‘I’ve got to do something,’ so when my doctor came round with the nurses I jumped out of bed and asked him if he could help me. He started me on sodium Amytal, the first time I had had any treatment for my problems.

After that I was let out onto the hospital grounds at weekends. My mother could visit and she brought me cakes. My father never did come to see me.

I never had ECT but I had insulin treatment. My doctor went to Japan and America to learn this treatment, a wonderful treatment they said. They had eight men for the first session and said there was a great improvement in every patient. One of the nurses, my mentor, wanted me to have it, but there was no room in that group for me. I went in the next group with the women.

My doctor explained what was happening and what I would see. He told me not to be afraid. He introduced me to one of the sisters and told me that if anything worried me I should see her. I went in the dormitory and they put me in a corner with screens around. The rest of the patients having treatment were women so they did not allow any male staff on that ward. We were kept on our own as a group. I felt comfortable because I could talk to the sister. We had to have 60 comas to complete the course. I was there 5 months or more. I had had my 60 comas so I thought I would come out of treatment, but no, the course did not finish until the last one in the group had 60 comas. I carried on and they reduced the dose of insulin so I had shorter comas. I saw plenty of nudity and they saw me. I can’t believe it even to this day, although it did not hurt me. When you read in the papers about mixed wards I think to myself, ‘Well, little do they know what I’ve been through’.

I also had a leucotomy. I was about 18. It was done before I went on insulin. There were two other patients having the treatment. They shaved the top of your head and made a small cut. One of the other two unfortunately died; the other later committed suicide. I asked why I was alright and was told they did not cut so deep with me. That was why I was alright, but it didn’t do me any good. I don’t think so.

Then I gradually did get better. I formed friendships, made friends with one or two of the nurses. I started working in light industries. I had already had some work experience. I had left school at 14 so I had already worked about a year and a half. They had a machine that was broken down and they could not afford to have it repaired. I said, ‘Switch off the electricity and I will do it,’ and that way I got a job. I got really into it. I was still a patient but I got 5 shillings a week. Quite a lot of patients were doing jobs like that in the hospital.

One day I was working in light industry and the bloke in charge asked me to take a letter upstairs. ‘Just take it up,’ he said. If I had known what it said I doubt I would have had the nerve to do it. There were others there including the head engineer. They shook my hand and offered me a job on the staff. I was 21. I was introduced to the other lads. I was still a patient living there all the time but now working on the staff. I stayed there until I was 49 when this part of the hospital closed.

As the weeks and months went by, the disturbed thoughts I was having got less but they were still there. I was doing some roofing and I was up on the roof and there were a couple of old tramps near there. They worried me to death for some money and I gave them some. Then I thought, ‘Did I do them any harm?’ I have had that worry ever since, for years. These thoughts were there all the time but they got easier to cope with.

My doctor pushed me to the limit and encouraged me to go out with young ladies: ‘Enjoy life, you are only on this earth once.’ I got friendly with some of the nurses. I was really looking forward to the hospital ball with a nurse one time. We went and got me measured for a suit. She bought the tickets and everything. The ball was in the main hall at the hospital. The men on the door were my mates. We played snooker and all that. They said, sorry, I could not go in because I was a patient. The nurse I was with went loopy. She said, ‘Come on,’ and we went somewhere else to a Greek restaurant. I remember standing back looking up at the dark blue sky with all the stars and I thought, ‘Yes, you are going to come across this throughout your life’. I made the best of it.

I have had to deal with stigma through my life a lot. I have, in my life, taken one overdose. It was because I had the flu. I couldn’t get rid of it. I took four tablets and then another four. Then my wife came home and found me on the floor. The next thing I knew I was in hospital. My wife followed the ambulance and when I got there I gradually felt ten times better because of all the tablets I had taken. The doctor asked about the leucotomy. There was a nurse there who pointed to my wife and asked, ‘Are you related to him?’ She said ‘Yes, he’s my husband’. The nurse said, ‘You married a lunatic. I’d never do that,’ and walked out. My wife did not say anything but I felt sick as a pig. I told my doctors the first chance I got and they wanted my wife to complain, but she had had enough, she didn’t want to. That was a hard one. I get upset when I hear anything about lunatic asylums. I wish I didn’t know anything about it.

When I met my wife my mother told me I must tell her everything. She knew I was a patient. My doctor saw me and my wife together. They said it was better to try. If they had not done that I might never have got married or had children. I was a patient from the time I was 15 to the time I was nearly 50. I worked at the hospital and cycled home at the weekend.

Now I have grandchildren. Sometimes I have cycled through the villages and been 20 miles away and started worrying I have left my pills beside my bed where the children could get them. I’ve worried they would come to my house and go upstairs. I have turned round and cycled 20 miles back to check. I never go out much because I worry about something at home.

When I left the hospital, the community there was breaking up and there was no more work. Someone helped by finding other work for me. I had already learnt to drive. I had stopped a van from running away once when I was a patient. I shunted it to the porter’s lodge and he said, ‘Thank you so much’. He could have got in trouble. He said, ‘I can get you to pass your test’. I went driving with him and I passed first time. That meant when I left hospital I worked on various other NHS properties. I also worked on people’s houses doing carpentry and decorating.

How have I coped over the years with my illness? Sodium Amytal deadens the thoughts for a period, and if I am active or distracted, that period is longer. Work, TV, cricket, and cycling all helped to deal with the thoughts. I was keen on sport and I loved cycling. I cycled home through the villages. That helped me physically to be a very good cyclist. I have got medals and cups for cycling

Once the building jobs dried up I was offered a job in an antique shop just down the road. That was a lovely job, I enjoyed it. As soon as that finished, then my illness, my thoughts, came back. I haven’t done any cycling in the last year because my knees hurt. I feel very dependent on sodium Amytal now.

However, talking to the right person still helps. It is very important to me that I talk to professional people and this is the best cure I have found. I would never be able to see my doctors and nurses every few days, but I used to have a little book and would write down what they said to me, for example, ‘My GP is not going to strike me off her list’. If I had a worry or a fear I would look it up in these books.