Chapter 5

My life now

The lady I live with, Norah, her daughter has got a border collie, and that's really beautiful. When I first saw it it was crazy, really crazy, coming in and out, running, very playful. I think it's got older now, and it goes to an obedience class, which has quietened her down a bit. She's a good dog. Anne Evans used to be my Adult Placement Officer, it's now Carol Hall. Anne got me where I am now, and I'm grateful. She could not have got me to a better place, it's really been fantastic.

It's really nice, I like it, I'm very happy there. The first thing I had for Christmas was this great big teddy bear! And then another year I got this little barking dog. I've got them both on my bed, they're nice to keep. So yes, I'm really happy, they are really very good to me, the mother and the family are very good. And Mabel's always welcome, we go out together. I've been to Lourdes since I've been there.

I'm going to try and get my head together and get Carol to come with me, and get a will sorted out in case anything happens. I'm not saying it would, but you never know. I'd probably put so much money towards the Spastics Society, or the people I live with, because they're the ones looking after me. I can't think what other places I could send it to apart from the people I live with, and the Spastics Society - well, maybe the place where Muriel is, because they can get the things she needs most and give her the things she wants done, which would help. Because, after all, she is next to me, I am more or less her life, and it would be nice.

I go to Foxley Lodge on a Tuesday. It's a day care centre. One of the girls there died last year. We called her Tilly, but her real name was Louise. She was cremated but I told them I didn't want to go. I gave them some money to get the flowers, everybody else from there also put money towards them. They help me with knitting and things like that. On a Tuesday they go to the library and get books. I've got a library ticket and I go with them to choose my books. Every Tuesday we do something different, every Tuesday morning, like sums, arithmetic, things like that - because I didn't learn that when I was a kid, only reading and writing. I didn't have the time to do that sort of thing.

At school, I didn't do things like adding up, maths, so I'm not much good at that. Reading, writing, telling the time and spelling, I know that. But I wish I knew more; adding up, English, learning about different countries, learning languages. When we went to Denmark I learnt to say 'good morning' in Danish, but I've forgotten what it was.

I have psoriasis, also I do have tablets, Thyroxine, which I take once a day for over active or under active glands, thyroids, but I can't remember which. I think at the moment they're level! I have blood tests and the results usually come back in about 10 days. I didn't have this till I left the Fountain and went to St Lawrence's, and they started to come up. They were worse than this, I had the same thing on my feet sometimes and between my legs. They itch sometimes though I do have showers and then put the cream on at night (I'm supposed to put it on twice a day). It used to be really bad. I try to wear cotton, not nylon, because it irritates it, makes me hot and sticks. My hands get quite bad at times, and I put cream on them before I go to bed. They can get quite hot, they get like that in the summer too. They're not so bad in the winter, I try to wear gloves so I don't get cold but I usually like to leave them to let the air get to them. It's something I have to live and put up with.

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I think one of my sisters had it. Hannah got it sometimes on her elbows. She had the same thyroxine operation, and Carrie has them now and has to take Thyroxine. She had the operation though she says they are underactive again and she's taking Thyroxine. She said I should have the operation, but I said 'No, I don't need to, I have the tablets!' They keep it down and it doesn't trouble me.

I keep pretty well and active. I go to Scottish dancing which I do enjoy. I'm going to Rangers, I enjoy going to Rangers and I help them out when they go to camp. I used to go to swimming school classes when I was at Purley Hospital and I learnt to swim there. I quite enjoy swimming. I still do go swimming, on a Monday and Tuesday. I'll be going tomorrow probably, from Foxley Lodge. They're very good to me.

I like word searches because they can help with crossword puzzles. I'm not very good at crossword puzzles but I get word searches which helps my spelling, and I use a dictionary, a good one. I bought two, some time ago now, kept one and gave one to the lady I live with because she had an old one. I gave her one. She wanted to give me the money, but I said 'No, you have it, it's a present'. Because they're very good to me too, and I like being with them. Since I've been back from Orlando, they've got me a television in my room.

I knew they were going to get me one, but I wasn't sure when. Of course the grandson's put me a bracket up, which I can move slightly, and I can put it on an angle. I can watch it from my bed. I watch TV with them too, but when I go up I watch it, at nights, depending on what's on. I like soaps, some of the soaps, and I like the documentaries and wild life, and the hospitals. Hospital programmes, Casualty and the real life ones like Jimmy's, the documentaries. I do enjoy them.

And I like the radio, music, and Scottish dancing. I enjoy it. The place where I go in Sanderstead, they're very good, all very jolly and lively, and they tease me sometimes but I don't worry about that. It's said as a joke. I meant to go there for Hogmonay, but with the snow the lady who lives in Coulsdon - she comes and picks me up, and brings me back, she's very good - she couldn't come because she didn't want to take any chances, because of the weather. It was really quite dicey where she was living, and it was a case of rather being safe than sorry. She didn't want to take chances because of the car. She drives, and she thinks of the people she has with her, the passengers. She's been a good lady.

Nowadays I go on holiday on my own. I get a bus and then go in to book my own holiday. The lady I live with, Norah, comes with me to help me book. She helps me, she looks through the brochure with me. I've got this year's but not with me. I think I might go to Scotland, I'd like to if I can. I like Scotland, I like the scenery. I got to know it through the Rangers.

The Rangers are something like the Girl Guides Association except they are for older people. We still wear much the same uniform. I joined them through Bramley Hill, a spastics work centre in South Croydon, a day care centre for people in wheelchairs and people with learning difficulties. This was when I was at Purley Hospital. One of the girls, Beverley Bates, had started the Rangers before she died. I don't really know the exact details. She thought it would be a good idea to start it off, and it's like going to Girl Guides for those who've been in the guide movement. I was, a long time ago, just for a short time.

One of the young helpers came and asked would I like to join. And she showed me where the place is a couple of times, took me a couple of times, and another girl. When we'd been a couple of times, the first time I started they asked, when they were going to Scotland, they asked would I like to go with them to Scotland. I said, 'Yes,OK' and I joined and went with them. The first night when we got to Scotland they asked if I'd like to take part in a colour party, which is a sort of parade. I said, 'Couldn't you have waited till the next morning?' I was nearly asleep!

I think we stayed a night in Oban. We had those camp beds, they were very uncomfortable. We were staying in a hall. And they had those camp beds rather than sleep on the floor. We slept there for a night then we had to go on the next day. We had the coaches with us. The next day we were, I think, staying in Edinburgh. I'm not sure if the trip was for two weeks or one week. It was quite nice, I quite like Scotland. And we also had these handicapped Scottish Rangers from Paisley, who were also in wheelchairs. We usually have quite a few of those from there because they make their own way. I've forgotten where we were staying now. I still go to Scotland whenever I can, with the Wallace Arnolds - I like them. I make friends quite easily, if there's somebody on their own.

I joined the Rangers a long time ago, when I was at Purley Hospital. I've kept it up and now I'm on with the Trefoils. There's two groups. A younger group goes one week and the older group meets the other week, like tonight. The Rangers is for the younger group, and I only go to that to help them out because they haven't got any helpers. It's quite nice, I mean you get a lot of people that you know, there's quite a few people there. They come from parts of Surrey, Coulsdon, Croydon, Carshalton, Epsom. They get picked up. Some people make their own way, they come by bus and they go home by bus.

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We do various little things. I made a cushion cover there. We make calendars, we do cards for people who are sick and birthday cards, we write letters to people like those who organised the pantomime. People come and give talks. They show slides of where they've been and what they've done. Alternate weeks like tonight we have someone showing slides. Usually someone comes up and asks if you'll say 'thank you' and other little things that they want us to do. It's quite interesting.

Sometimes they have outings for people where they have Trefoil meetings in other places - they ask if we want to go. And they have an Activities Day sometimes, in July, like canoeing, rowing, archery - I'm not very good at archery - and nature trails, crafts, handicrafts (I do that already).

Of course, Muriel lives at Whitehill House now, she has been there since 1994. I asked if she could have her own room and, yes, she did. The manager what's there now agreed, so long as the person who was sharing a room with Muriel would go in with Anne, who's another with cerebral palsy. There's two double rooms, and mostly all the other rooms are single and quite big, because of the wheelchairs. They have to have room for wheelchairs. They're quite nice rooms. They've got their own nice rooms and they've got wash bowls, nice curtains, a wardrobe. She quite likes being in there, I mean they've got their own television, cassette tape recorder, and things like that.

There is a problem with Muriel's room which I spoke about at her Life Plan meeting and I think it helped. I've complained that her dressing table is too big for her room, and she needs a smaller one. You can't open the door wide enough to get the wheelchair in, you've got to hold it back. You can't really ask Muriel to put her arms in every time - she's inclined to hold them out, she's one of those people who does that. She's like Jesus Christ Superstar, she holds her arms right out, bless her, she can't help it. But if it hurt her she'd start crying, she'd burst into tears. I'd say, 'It's all right, I'm just putting your arms in'.

I go to see Muriel two days a week, Wednesdays and Thursdays. When I first arrive her face lights up! She's really quite happy. I spend the whole day there, I leave there at quarter past eight at night. I get there about 10 or half past 10 because I go to the shop first and get a paper and a packet of chocolate buttons, or whatever. The lady in the day care centre is very good with her. If I tell her I've got something in the bag for her she gives them to her whenever she goes over there. I wish I could go there every day but it's difficult with transport. I used to see her every day in the hospital, but not any more. I can't do that now much as I would like to. When they were in the hospital I used to take her to the shops to have a look, and walk her around the grounds. I can't do that now, there's nowhere to take her, just up and down the drive.

Muriel can't feed herself at all. So when I go up there I feed her, wash her, bath her, do her hair, put some cream on her face. I do everything for her! And I put her to bed. As I said, I'd like to visit Muriel more than only two days a week. It would be nice to see her every day but it's difficult getting there. We can't have a conversation, well not as such. I mean I talk to Muriel, and say things to her, and I tell her when I'm coming up and what I'm going to get her.

She knows what she wants and she'll make you understand. Muriel is really quite clever. She likes it when people are being told off, when somebody else is being shouted at. She doesn't like anyone shouting at her though and, if they do, she starts crying. She hears it on the TV and and she watches it, she's got one in her room (most of the clients at Whitehill have televisions now) and hers is on sort of a trolley, for a television and video recorder. She's got both. And if she hears it on TV she'll sit, lay there, laughing at them, she thinks it's funny.

Muriel's not sitting up straight, as you can see from the picture. She's more or less sitting on one side, so you've somehow got to try and manoeuvre her around so that she's not getting in one position all the time. The chair now has got a shallow base, so she can relax and sleep if she wants. Most of the time if I'm there I just put her on the bed, it's more comfortable because she has the pillows. In the chair she hasn't really got the pillows, she's just got the cover that covers the base, the Matrix base. Most of the chairs now are Matrix, they're made by the Bradford company. They're very nice really, the chairs that they have. Muriel's chair was specially made for her, to give her some support.

It's what I really like doing. I like being with Muriel and people like her. It's what I am. I like to help, and I like to mix with other people. I'm part of Muriel's family now. I always thought she was special. She looks forward to it, too, and I think she must miss it when I'm not there. If you've got a tongue in your head to speak for yourself then you speak up. Like Muriel, she can's speak, so I speak for her and ask for the things that she needs done for her. That's what they call 'being an advocate'. Doing the things that she needs and what she wants. I love it. I love life as it is now.

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