Okay I had my surgery on the Tuesday I think about well late morning and I think I was awake about three, four in the afternoon. I’m not entirely sure. I remember my husband coming to see me hed got me some magazines and something to build to keep me entertained for my ten-day stay in hospital.

I don’t really remember him leaving but I was quite groggy after the anaesthetic and obviously I’d had quite a major operation and they in the middle of the night I became aware of something not being quite right.

I just remember it being dark, the lights were all out and I couldn’t, I tried to, to speak out and I couldn’t and I managed to press the call button for the nurse with my left hand and the nurse came to see me and it was like being in a box that I couldn’t speak, I couldn’t communicate with her. I couldn’t move, and basically I, I could understand what she was saying, she started shouting at me trying to get me to talk and I couldn’t. They then called a doctor who came and started shouting at me as well and so there was a bit of commotion and I could, I was only trying.

I just felt like I was inside this box looking out and I was just trying to communicate with my eyes and they didn’t understand what I was doing, why I wasn’t saying anything it wasn’t really until the morning that it had become clear that I’d actually had a stroke in the night.

It was scary I’ve never, I have never felt as scared in my entire life. You don’t appreciate how easy it is for people to talk to you and for you to talk back to them until something like that happens.

The stroke was on the left side of my brain and it was fortunately just a very minor one.

So was your, sorry, was your speech affected at all?

At first, it was. Certainly in the acute hospital, those first 3 weeks but when I got to the rehab ward, it was a bit better. But first off, it was just sort of slurry and a bit difficult to understand but after a while, it, I don’t know, I’m not quite sure what, I think I just got used to how it was and adapted to the differences so then I could certainly make myself understood. So I was lucky from that point of view that I could communicate OK.

Would you say that your voice has changed at all?

Yes.

Since the stroke?

Yes, it has.

Can, can you explain that?

Well, people that know me from beforehand will say my voice, I don’t sound different but certainly my concentration’s not as good as it used to be. Sometimes I will just loose my way in a sentence, I’ll just lose my way in a sentence and forget what I was going to say. So I don’t think my conversation is as fluent as it used to be and I think sometimes I think I get a bit anxious and I try and rush what I’m saying and speak very quickly and another thing that I found is adjusting how loud, the volume of my voice. I find that difficult to do, to talk louder or quieter. It just tends to be whatever comes out is what it is. And also my singing voice has changed because before the stroke when we were growing we used to quite often go to karaoke evenings. I used to like singing in the karaoke but that’s not, I’m not as good a singer any more either. I won’t do a demonstration but believe me, I’m not. I think just the vocal range of my voice is much more limited than it used to be. So it has affected it.

After perhaps a week or maybe 2 weeks later, I’m not quite sure, I was taken left out of hospital and fortunately I could walk, move, I could eat and from those several aspects were good for me. Later, unfortunately, I couldn’t understand when other people spoke to me still. I couldn’t read, I couldn’t write, I couldn’t listen. I was totally and utterly exhausted and throughout my life I had only been a person who could have a lot of energy and wanted to chat. Anyway, the worst was that I couldn’t speak properly to anyone or really understand it and I felt oddly drunk. Anyway, my life previously I had always been a teacher. I had even received higher up, up to an MA in looking at Hebrews in Religious Studies, but previously I had, I couldn’t even look in the Bible or anything and in my belief. There was nothing. In studying with second children or looking at any subject, everything became nothing. Just nothing. My life, as you can imagine, totally changed.

And you said you wanted to see a speech therapist locally. Can you just go through how long you had to wait and what you do when you go to see her?

Okay, I went to, as I said when I was in hospital, I was seen by the speech therapist on the ward but I live quite a way from the hospital and I wanted to see somebody who was more local to me. Unfortunately she only has one adult clinic a week in my local town and we had to I had to wait about six months from the day of the stroke until I got a, an appointment with her.

So the first time that I saw her I’d already come on a huge amount in my speech and when she first met me she really didn’t see anything that was wrong in my speech but I know myself, that I was struggling with certain things.

She described it as quite high level the things that I was still struggling with. But if she was to say, name me five emotions I would probably come up with happy and sad and wouldn’t be able to give her another meaning or another word you know, she would say, ‘Name me five zoo animals or pieces of fruit’, and I would really struggle to name five of those things still because my word dictionary was still quite muddled.

She would ask me to give her an alternative word for, ‘Give me another word for beautiful’, and I would struggle to find another word that would mean that. So when I’m trying to help my child with his homework I am, you know, learning myself with his English and his literacy it was really helping me, helping him.

And do you find that it’s easier to talk in Tamil than it is in English?

HusbandYes. Yeah. Tamil go-good

WifeEnglish is hard. Second language is always hard. But he, now hes more anxious to know, he wanted to talk English more than Tamil because he thinks hes OK with Tamil, communicate with me and the child. Then he go out or he want to be more independent, he wanted to go out and do the shopping or he wanted to go himself anywhere, he wanted to talk to other people but he need English. So hes thinking if someone could help me or some, or somehow I have to talk English, and hes, very anxious nowadays. It’s really hard for him.

Between the family, do you mainly talk in Tamil?

HusbandYes.

WifeTamil, yes.

HusbandHmm.

WifeMm hmm.

WifeBut what he says, he always the, says the prayers all the time. The prayers comes one by one. He used to sing in, in the temple festival, he used to sing. All the prayers come one by one but he couldn’t bring the words, you know, sentence clearly. Then I ask the doctor why it’s like that. Then they said the prayers in the different part of the brain, like singing prayers is different speaks. You have to bring words together. That’s part of the brain is damaged for him they say.

So with the prayers, can you still speak the, the prayers?

HusbandYes.Yes.

WifeClearly.

And you can still sing?

HusbandYes.

WifeYes.

I would find it extremely stressful if I was put in a situation where somebody didn’t know me that I had to talk to somebody, even if it was in a shop because they wouldn’t understand why I was really struggling with words. Close friends and family knew what had happened but I wouldn’t answer the telephone, everybody else around me I would make answer the telephone because I didn’t, didn’t want to talk to anybody and try to explain what had happened.

So I would, if a friend had called they, all my friends knew that I was going for an operation so you know a few weeks later when they were phoning to see how I was, my mum who had come down the week before I went into surgery and ended up staying for about six weeks I think to help look after me and the children.

She would explain what had happened and then I would then speak to, to people. But I couldn’t, I couldn’t make any plans for going back to work or anything that was very, very difficult.

How is it when you meet new people or if you’re out and about with your communication?

Well’ difficult.

Mmm

But it’s alright.

Do you have something that tells people?

Yes. Yes the is in. (Showing card).

Hmm. So it says, ‘I’ve had a stroke’

Yes.

”And find it difficult to speak read or write’

Mmm. Mmm.

”I usually understand what is said but please could you speak clearly?’

Yeah.

”Thank you. And that was from the, the Stroke Association.

Yeah.Yeah.

That’s good. How did you get that? When you were in hospital?

Yes.

Yeah.

Mmm.

Have you’ Have you been a member of the Stroke Association since the stroke?

No.

No. This was given to you in the hospital?

Yeah.

Yeah. That’s very useful. I think people would find that useful to’

Oh yes. Yes.

‘ to know about.

Yes. Yes.

Yes. Because other people might not be get, given it.

Yes. I’

In Philadelphia.

Yes. And I can’t speak and they

And you gave that to them.

Yes.

You gave that to the police.

Yes. And said alright.

And, and helped you.

Yes.

That’s really helpful. That’s good.

Still thinking about socially, has the stroke affected you getting out socially at all?

I don’t find it socially difficult’ I mean, I love to go out and to talk to people and to just talk about things for just odd words to help people. Sometimes I suppose, because I have my own power through using my hands, using my mouth, using my eyes, and I use expression sometimes if I find that other people are 100% difficult, I have to say, ‘Can you just get a pen, I haven’t got a clue what you’re saying?’ Right. Sometimes people become frustrated or angry. Very, very rarely. Very rarely. But, to be perfectly honest, I would say I think women are much easier than men. Yeah, they are. Women will listen.

Did you find that sometimes it’s helpful if people write things down?

Or draw things, yes. Drawing things. Yes. Yeah. Yeah.

You get better but you, I don’t know, I can only say, you can’t sort of understand why things are the way they are, you know, were all the same I suppose and that’s were it is. And I also read that one, one of the reasons why a lot of people consultants go into it or the doctors go into because they can’t put their finger on it because were all different. And it’s not something you can give someone and say, ‘Well, you do that and you’ll get better’ because you don’t and I’ve found that.

After 2 years, I’ve realised now, this is the best it’s going to get, you know, and I, and I think you say to yourself, ‘Well, I’ve got to get on with it, get on with it and battle on, you know and don’t worry about it’ and I got to a point where I wouldn’t tell anybody I’d had a stroke at all. I go into a shop and I’ll, I would just bash away, you know. Other people have said to me, ‘Well, why, why do you do that?’ because we all had a card, were all given a card. I said, ‘I can’t say that I’ve had a stroke, please be careful with me or something. I thought, ‘I wouldn’t do that’ I’d bash on, ‘Oh no’, they all said, ‘No, no, you, we found that if you tell people that you’ve had a stroke, people are quite set have you ever thought of that’ and I thought, ‘Well right yeah’ so I did say that and people did. And when I was on the telephone and got myself in trouble and I wouldn’t try to tell them that I’d had one I’d just bash on with it and, you know, I’d come away perhaps thinking, ‘Well that’s a mess’ but when I found people now, everybody’s kind and I think, ‘Well that’s good so that’s something that I’ve learnt you know, I was a bit proud or pride, proud I suppose, I was you think, ‘Well why do you do that?’ and they all say that.

So if I go in now and I get in real trouble, I’ll say, ‘I’m sorry, if you bear with me I’ve just had a bit of a stroke. ‘Right, oh yeah, what is it?’ ‘Great’ and you feel your confidence gets a lot better but all the time it is a funny thing.

I just felt if I got home I could talk to friends and things on the phone and get my speech back. And in fact after three weeks they did let me back, and Neil said he’d look after me. And I started ringing up my father and various people and telling them that I couldn’t talk properly but I talked gobbledegook, and they were all quite happy. But I came out, I think, at the weekend, and on the Monday my GP, who’s a very nice lady, came to see me, and she came to see me again on Wednesday, and on the Wednesday she said, Gosh, your talking has really improved since Monday, I’m really surprised. But I’ve really, really been determined, because my mother couldn’t talk and I’d seen what it was like if you can’t talk.

How do you think you got the speech, what did you do to – was it just willpower or what?

Well, I’ll tell you at [name of hospital] they eventually got me a speech therapist, but I think it was willpower, actually. You know I mean, like I say, my father was actually, you know, I could ring him up and I could talk for an hour, and I sort of, a few words would come out but not others. I couldn’t, it was just pretty determination, and he was just very, very nice [laughs]. I mean he just said the odd word and sort of asked me the odd question to get me to talk. And, you know, he let me do that quite a lot, so I think it was – and also Neil encouraged me to talk and, you know, I think it was really sheer determination, because I’d seen my mother, who hadn’t had speech. Because of that it was very frustrating for her, because my mother was quite like me, she was a chatterbox, and I could see she was really, really, you know, sort of frustrated by it all. So I was determined not to be like that. I really did want to be able to talk so, you know, it was more important than other things, really.

Our, yes, my grandson sometimes were talking at some, or maybe hes reading something or I’m reading to him or worse still is when my wifes reading him and (is my wife alright? Is it?) yeah. Shell be reading something to him and then shell say to him, ‘Do you, do you mind grandpa just reading for, can he read a bit while I go and make the breakfast or something?’, you know, ‘Oh no, no, no, stay with me, stay with me nana’ because he knows I make a mess, I’m going to make a mess of it, you see. So sometimes he will, hell say and reluctantly he will start doing it. But once whilst we were looking through the, when weve got the book, he very quickly will tell me things that I’ve got wrong, you know, or words, ‘Grandpa, you said that, why did, you know, you said that grandpa’ ‘Oh yeah, sorry.”

I can’t do that, I’m going to do it, so I’ll bash it away and, but it’s, it, I think with me, it’s mainly the confidence you think and once you get, feel you can better, and my grandson here from [town] hes quite sharp and hell say to me, ‘Grandpa, you, you keep saying this’ you know or ‘Why did you say that?’ and I, ‘Oh, I’m sorry, [Grandson’s name] I don’t know. So we started words I could do and I couldn’t understand why because we, I think it was it, Mary Poppins, the supercalifragilisticexpialidocious. Now, that was the one. Now I can say that. When we first tried it, [my grandson] said, ‘You say it, you say it grandpa, supercalifragilisticexpialidocious and I had no idea. And what I can’t understand about the stroke is that once you’ve practised it, I can do it, I can get it right, I can get it right every time I think now.

But I still, I do everything with my left hand now, and I basically – I mean, I couldn’t you know write vaguely with my left hand, and also, actually, straight after the stroke – and I think this is really important for anybody who wants to learn how to write or anything – straight after the stroke I had an aunt who lives in Scotland, and I used to write, before I had the stroke I used to write her 10-page letters. And after the stroke, although she was in her 80’s and she’s died now, unfortunately, but she insisted I still wrote to her. And of course I couldn’t really say, Well, I haven’t got, you know, any ability to write’, but she said, I don’t mind how short the letter is. I just want something from you. And so she was a very strong woman, very, very determined, and basically because of her I wrote with my left hand. And I’ve been able, until I got the computer which I’ve only had for the last couple of years, I used to write to her sort of a whole A4 side, so I used to be able to write, but I don’t think all the writing was very clear. I mean it was pretty unreadable, but she always said it was fine.