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(1) BASIA
What happened?
I was brushing my teeth, and then noise left ear just started. The noise like a drill inside my head. Cut a long short, the ambulance going to hospital - I was not unconscious, I was everything perfectly work, but I was sick etc. I can talk, I can think, I can stand up, whatever.
The hospital say you have to lie down just in case, and then we have scan for the brain, and they said I had subarachnoid haemorrhage, and we have to go to different hospital, Royal Free. Ambulance transfer and then lovely ward.
I was anxious, but only anxious about waiting, I hate waiting. I didn’t know how long last, I had no idea how long this haemorrhage is better. I had no idea!
The doctor and my husband talk, he said to me you have to do this first, then this, and after that and after that, and I said: ‘Look, how long take the whole thing?’ And he said: ‘Well, at least three or four weeks after the operation.’ And I thought: ‘Oh! That’s not bad, all right, when the operation?’
They have to explain my husband and I: they have to wait until blood pressure end, this bleeding completely stop, or something like that. So then I have to wait another scan, angiography, so I think I have that next day.
And after that the whole period hospital before operation was . . . . really nice, because lots of friends they come see me hospital, and I thought: ‘Oh, I have lots of friends’ and I was happy. I don’t know why, because people sometimes think this terrible business hospital, and children – I have two children.
But about two or three day later, suddenly I can’t speak at all! Now, but I didn’t mind, because again, maybe different pills, maybe I was just happy, but I did a bit frustration about the operation, because I want the operation now.
Obviously the doctor explain, I and my husband what has to happen, how chances I survive or whatever, but I didn’t study enough because . . . I think I want, I’m a survivor. So I thought: ‘Yeah, well, we won’t talk about that you know for me.’ Just, you know I’ll survive. I have to quickly the operation.
The operation
I can remember the morning start operation. I remember woke up completely different ward, I don’t know where I am and I can’t speak, and my body it completely wire and tube and oxygen mask.
I didn’t understand, because before, just before, I thought I was dead because I was flying, I was up above like flying. I saw the room and the walls not clear, no ceiling, but the walls like jagged, like there explosion or something and the walls crumbled down.
But I saw the bed there, then I didn’t know before but I thought: ‘It’s me down there!’ And I was all right, really. And then something happened, I floated down and the bed my destination. Before I was up there and now I’m inside my body.
And then I was thinking: ‘What happened? Is the ward there?’ I didn’t know at first if something goes wrong. Of course I can’t speak and people said sort of: ‘Oh, hello there’, not like before unconscious then they say: ‘Oh, you’re alive! You’re conscious!’, nothing like that.
That day my sister comes to see me, I try to explain what happened the day before, what day it is, I look my diaries everywhere, and then my sister she knows I want something, but what she didn’t know, so search my bag until I say: ‘Yes!’ or not yes but: ‘Mmm.’ I look in diaries and I say, pointing the day, and I say something about: ‘Now? Now?’ and my sister told me that this operation is four days ago. And I survive.
I can’t speak, I can’t move my body too much, but I think I’m exactly the same before, before operation, because I can’t speak. I can’t move because the nurses tell me to lie down, not upright.
This passed days, this special ward, and then think ten days and they say I can go upstairs now, no need of this monitor and all the other things. So I went upstairs to ward, and again, happy period; it’s fine my hospital visit, because I know I can’t speak but I try to express myself without words, and I did it not too bad.
Then obviously physiotherapy start and language therapy start and that’s fine because I like this hospital, but they say to me you’re well now, maybe you go to near hospital, the first hospital I went to that day. So I went to one week to that hospital and I didn’t like it at all. So I had to leave quickly.
Going home
When I go home, one or two weeks it’s like getting to know my home back. That’s all right. I gave to all the appointments fixed for me therapy, different therapy. And all good experience for language therapy and physiotherapy, but not good this hospital because I have bad experience for the consultant surgeon.
I think he hates women and he hates patient really, but women patient worse. He thinks aphasia something about intelligent. So whatever I find to bring up he always refer my husband, and I hate that so next time see consultant again I bring my female friend – she is a doctor anyway.
And exactly same happen, he said to me: ‘Can I phone your husband about this?’ I said: ‘No, I’m here.’ But he said: ‘Maybe too difficult for you, you don’t understand’ and I was so, so – I want to hit him. Well, I didn’t, I can’t the words describe my words, I can’t express myself, so I hate that. And my friend says exactly the same afterwards, but she said to me ‘I can’t the consultant what I think of him because he’s the same hospital.’
Unfortunately this the last of the happy period. Soon three or four months finish because actually I was depressed now. Depressed completely different thing, and I have to lucky my speech therapist knows touch with Connect, and thank God I was lucky to have counsellor for me: Harry.
So at least the therapy helped me to try to live normal life, and that’s the best thing about Connect.
Nerve pain
When physiotherapy finished, they say I have to exercise every day my hands, because my hands is worse affected. But unfortunately after that exercise soon hurt, because I suppose my nerves this hands now alive, and it hurt to do the therapy. So I can’t do it, and no painkillers work for this pain.
I have to completely different appointment now, to go to pain clinic and I with this pain clinic two years. They try everything, try blocking the nerve, blocking the drug, we try different drugs, they try lots of things, but there’s no effective at all. Some of them worse actually. I tried homeopathy, I tried acupuncture, so I’m going to more things try, and least a dozen I haven’t tried so I work on that all the time.
Preparing for the future
Before I was discharged hospital, I know now there’s lots the authority don’t talk about. Some body, some local official, one person to one person they supposed to speak what happen later when you go home, what happen in your work, what happen your pain, what happen you relationship for family.
They can’t say what happen exactly, but different things happen, that one or that one or that one, they talk about that. They only talk about speech language and physiotherapy, and have you got people to help you at home? Help you, they mean physical thing.
They didn’t talk about what happened with this haemorrhage, what happen if you’re depressed or not depressed. The whole business is different stage, and they don’t talk about that at all. You find yourself different periods what happen.
For example. Practical thing. They never talk about how to put benefit about living allowance, I didn’t know enough about that at all, at least half a year, and that’s because I have friends who have this allowance so she told me about that and we write form, she helped me the form, because big form.
I have to myself how to tube and bus pass, I have to search everywhere how to do that exactly, and it’s difficult thing. Obviously long time ago this authority they think this family is a man, he’ll look after her, that’s it. Obviously they think, well they don’t need social worker.
But actually you can social worker, because show you how to apply benefit, how to probably different things, like you’re anxious, you’re worried, you’re frustrated . . . if you have not counsellor you don’t know that! How it feel that. I was lucky, I had a counsellor. But lots of people need social worker, at least one month or two months and then fine.
Looking at photographs
I think people like me, is just natural to look at past. The past is best served with photograph. Before I can’t imagine future at all, so I look at a photograph and search and sort of pick up the past photograph like – not best people, but what I want.
So all the photograph I have I search everywhere, and some of the people I find there I put in little pile. And then later I look at this pile all the time to get my sense of people this photograph, some are dead, some not, and just remember, my thought is a bit like a book I was reading.
My brain it’s past. And at least I’m my depression control about that. I did it if I was really depressed I had to do it then. And obviously one or two people I talk, I show them the photograph and I speak about these people, because people don’t know my past that well at all. It gives me a chance to talk properly, not the family but other people. So I can talk about the past using the photograph and my speech is better all the time.
Connect
So at home I was most depressed first. But this therapy Connect it’s really helped me a lot. Not just be there, not just to talk other people affected like you, this communication.
What it is, it changed me how to look at past things like photographs, like drawing, like poetry, like looking at photograph for my members family, my close friends. Obviously, what happened, if I’m depressed it means I can’t imagine future, so I looked past. Now I know now it’s actually worked, but before I didn’t know, it’s just something I have to do because otherwise maybe I go too much depressed.
So I look at the past, look at the times happy, but what happen is Connect help me to do that. I mean obviously practical things yes, but unconscious is just we talk about other people, the atmosphere of Connect is - for me it’s like half therapy, half helping others.
This process of the therapy, of going to Connect, every week, twice a week, slowly things surface. But slowly. If I go to Connect I have to more focus for my - not just problems, for my point of view. And you have to focus for the group I’m going to, discussion or whatever. And focus for my own counselling.
For me Connect is communication. Communication other people, communication workers, communication outside, communication inside, it’s all communication. You have to connect with other people.
And I did all of them except my family first, because I suppose it’s easier. And I do everything I do well. I like to talking so my therapy worked me. So I was trying to connect the outside world, and that’s easy really for me, but the other one, family it’s like a glass wall. But this happened and then inside I can connect the family as well.
So for me Connect charity is good name. I think all them have communication, aphasia, ‘Connect’ is the word can mean something like that. Connect helped me to organise my brain a bit more logical. And of course if you think about past this word ‘Connect’: you have to connect past, and then maybe you actually more focus for future. Before, I took one day at a time, and that's not living for me. But now, the present makes sense because I have a future.
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© Keith Humphreys 2004 <<<<< khumphreys@yahoo2002.co.uk >>>>>
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(2) TONY O
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Tony O'D Until his brain haemorrhage, Tony was a teacher. He had been the headmaster of a London secondary school for five years. He had a PhD in philosophy and he said: I know that there has been problems with my little problem but it was lucky that I have my wife Catherine and my three kids James, Mark and Paul who was able to help. Tony still has some things he wrote for his work, although he can no longer read them. He also has an audiotape of himself dictating a document, recorded shortly before his brain haemorrhage: he has kept it as a souvenir. Below, Tony uses drawings and words to describe the communication difficulties he has had since his stroke. He also talks about some of the strategies he has used to help him to overcome them. This page was made in collaboration with Becky. Some of the words were written by Tony, using speech-to-text computer software; some were noted down in conversation with Tony. They have not been changed, but with Tony’s permission Becky has sometimes added comments. Tony's words are in blue, Becky's are in black. All of the images were created and selected by Tony.
Some years at this time I had to talk about for a large group of people. I'm sure it was not that there realise. I was not very good indeed as a Aphasia. And they did not know me. However I thought it could be a very interesting part; an O.K. or a terrible mess! These are the pictures that are actually used. Tony used the drawings below for a talk he gave to 'speech and language therapists' (his inverted commas) about how he feels he communicates. They did realise that he has aphasia when they asked him to talk, but they didn't know it is quite severe. He decided to go ahead and see what happened.
This is my problem: the brain. One side doesn’t work.
This is what’s happened. This little bit here: there it is on that side. Bu-boom. Then of course you go down. That’s where they chopped it. Nine hours to chop it, the whole thing. My wife wrote: ‘brain haemorrhage.’ This is now. Haemorrhage eleven years ago. The things that I’m ok still: walking, drinking, eating. The ones that I’m bad at: reading, speaking, writing, understanding. Four to five years, reading speaking writing understanding don’t work at all.
This is the right side of the brain. >> << This is the side that doesn’t work.
One side, it’s ok: eyes, talking (not sure), hand movement, walking around (so so), hearing (half and half). This one problems. Eyes; miss things on one side. Talking, not quite sure, out. Hand on this side pretty good. Cold sometimes. Walking is pretty good. Hearing things, mixed around. I can hear what you’re talking about. But if you ask me words, I haven’t got a clue because I don’t hear it.
Bring them together. Nobody can say how they come together. This is what the doctor and psycho people say: I have an IQ of 52!! (I took this as a joke.) I knew all about this with the kids at school. I don’t like it when people say: ‘Tony is a gentleman’. What would you do? Tony is explaining that he doesn't like to be patronised.
Starting from the last three years. I couldn’t say anything and the reason I couldn’t catch between hearing and talking. It took me about two years to sort out the ‘b’ and the ‘t’ and the ‘d’. If I can see it I can do it. I actually know where it is in the mouth. I took hours and hours, weeks and weeks, using the computer to bring those out. At first, Tony couldn't say words at all. Tony found he could make sounds more easily if he worked out where in the mouth they were produced. He made detailed charts showing where all the different sounds are made.
I was trying to use pictures to make as a
language. Tony wanted to find a way of using pictures and symbols to communicate, instead of writing:
These little pictures make up new "words". I think it's
no real problem. There is another way of thinking of words. This is the problem that our language have usest thusands years. And how can we used the sentences. And a sentence is not very easy also. But we need haven't groups, very large groups, becomes a total way gives a 1,000 years on. It does not have to be a way of sentencing and languages as 1,000 years. One needs an other idias to have somethings to have othe ways.
Tony knows a system lots
of people could use to 'say' whole sentences might take a very long time to
develop.
The interesting of these is about the China. This problem is the first one: It is that the symbols of the China people have made them thousands of there years. This is the second part: To become making such symbols should be through it way of talking-hearing. That would seem to be normal. But is so easy! That would look impossible, was silly. Still had other problems, how can one need as a grammar. The pictures have somewhere at least as you can bring those pictures together. There is another way, as an idea as "the maths" and even the philosophy as sometimes.
This "therepist" had been working in the University London for their science language, that she thought there was an old way, that it was not thought on, that had find any books as there university or other places. I looked all
over the places convenient. I got a single one, from all from the London
University places. Tony started trying to find books about using symbols to communicate; he found only one:
Prof. Fawcus showed me about other books been used a few times before them. He showed me to suggest that Mrs. Ena Davies to this had been used this. I went to Ena in Wales. She showed me another book but had told me to go to Canada to meet Dr Shirley McNaughton. I went to go to Canada. She was very kindly to meet us. With Shirley I had a really good time, we stayed with them. She was so kind to us and she had for to me a lot of time and we had time to talked. Dr McNaughton's had worked with the [people with cerebral palsy]. After an other year on I went to Ireland and thare some people who had interesting in this work. It is a groop to carry on to do this work. But on this way have a problem which it is not so as others. But, this surpassing is on the "words" between myself and others. I have the main problem between myself has a language and to there grammar. Since his original search, Tony has now found 5 or 6 books. I've been doing a bit of life drawing for about six years.I usually throw them away, but I quite like this one.
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© Keith Humphreys 2004 <<<<< khumphreys2002@yahoo.co.uk >>>>>
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