One thing you just touched on earlier was the, I suppose you’d mentioned about depression and perhaps feeling very emotional and crying at different stages. Would you mind talking a little about that?

No, one of the, one of the symptoms of stroke is emotional instability if I can put it that way and I remember I burst into tears the first time I, my, my son came into the ward. My youngest son, my eldest boy is in, in the Navy and he wasn’t able to see me at all during the stroke, but yes, and, and I got very emotional a few times and when I was taken to the toilet the first time in this sort of cage, I mean, I burst into tears after that because I thought, ‘Oh dear, what on earth, you know, what on earth, am I going to be like this for the rest of my life?’ being carried to the loo like a, and I overcame that by, by will and I turned it into determination that I was going to get better. I wasn’t going to let this thing beat me into the ground. But I’d say most people get emotionally, very emotional. It’s probably something to do with hormones or the brain or something.

Do you think it’s changed you emotionally at all?

No. I don’t think so’ Except it’s it’s I get frustrated with not being able to do what I used to do but I’ve accepted that now. I don’t know whether I’ll be able to go back to being independent again. I’ll be dependent on other people.

How do you come to accept something like that?

Oh well, I accept it quite quite readily’ maybe because I realise my age You can’t live forever [laughs].

Why do you think? What has helped you?

Because if you have faith and obviously if something happens, you’ve got to accept nature. This is nature. You’ve got to help yourself and nature will help you but if you sit tight, then you haven’t got a chance. So I go myself, my mind, no, it shouldn’t happen to me. It can happen but at least it has happened so I have to fight this battle myself. This fight is what I do my will to live, my will to do something. That’s why I’m here. Other than that, I don’t think I could have made it.

When you said if you have faith, do you mean religious faith?

Yes.

And that has made the difference?

That makes a lot of difference, yes.

And are there religious people who have been in any way involved in?

Oh yeah. When I was, when I was in hospital, they used to come there, a lot of people used to come there, encourage you, encourage you, as preacher, you know that they do.

How long were you in, in the hospital there?

I was in the hospital, the major hospital for 7 weeks. Yeah. I would have been less if I could have got out quicker actually because I was, as I say, I was, I was not very happy in there although I did see quite a lot of my friends because I was in London, so lots of people came to see me.

But one of the things I became increasingly aware of, was that I no longer belonged, and they used to want to take me out when I got stronger, in my wheelchair. They used to wheel me across the busy London road, I was, they were allowed to do this, and take me for a cup of coffee or something like that. And I went out into the world and I thought, ‘I don’t like this. I used to walk out here in this world in high heeled shoes and I can’t do that now and I don’t want to be out here anymore and I don’t belong out here in this world. And what happened to me in a way was hospital became home. It felt safe and it felt like where I belonged because I was newly disabled I also had a lot, a very bad short term memory problem, you know, my brain was quite, still quite fuzzy really. And I felt safe there, and the whole of the outside world that I absolutely love and I love London I no longer, I no longer wanted to be out there.

And that was particularly brought home to me in a way because when I would go from the twelfth floor, which we were on, the neurology ward, down to the ground floor to the, physios, down to the physiotherapists, usually in lifts in the wheelchair, and that was when it started really because children were then my height and they’d stare at you, like children do, ‘Hmm, what’s she doing in there?’, and I used to look up at adults and they would not look at me. They wouldn’t look down. They would just, they would look and move their heads so as not to look at me and I thought, ‘God, I’m an embarrassment, they don’t want to look at me, and that made me think, ‘I don’t belong anymore and I’m different and I’m disabled. And that made me absolutely determined to get out of the wheelchair. I was absolutely determined to walk. That I was not going to live in a wheelchair for the rest of my life because I had been told that I would never go home and that I would have to live in care for the rest of my life.

The one thing which always bothered me was this experience always made me feel as though I’m not far from death, it could happen any day and that way I used to get anxious very soon. I used to feel that my wife should be around me, she should not go out, if she goes much more than an hour, then I’ll begin to phone and find out where she is and she doesn’t carry mobile, she doesn’t keep in technology and whole lots of that. But because of the good neighbour she has gone away, somebody will come and sit with me to talk to me and find out what I need. So in that way I think I’ve been very, very lucky. Someone or my friends who their children all, they call me uncle and they will come down, you know, to stay with me for a while, ask aunty that what uncle needs and so they kept busy but this, the doctor thought that it’s symptoms of depression I think started developing which was a bit sad. Every time I will see at funeral, if I will go to the funeral, to anybody, it will be very difficult. Normally if I’m going to funeral, I have to speak there and that is first thing I learned that, no, I should not. But some of the family would expect me to, even though I speak a sentence but they would have want me to say and of course attended many funerals of my friends who passed, passed away and was a bit of shock and my wife realised that attending a funeral is not a very good thing. So recently there has been two or three but I couldn’t make it.

But the doctor recommended some sort of, it is not that antidepressant but yes it definitely keeps my nerves control, citalopram, 10mg dose, and that has given me a bit of patience now. At night, I can be by myself I will not be scared of it. But still, you know, all the time, the key’s in the door [laughs], when I lock it and go upstairs. It will come to my mind that if, if something happens, how would they open the door.

How about your sort of confidence in everyday activities and doing things in your life? Has that been affected?

Stroke takes away all your confidence completely. That is one of the things definitely. It takes away your confidence completely. You have to learn to build up your confidence. It takes a long time. I don’t think you ever regain full confidence completely. No. You’re always wary of things, you’re not sure about anything, even just going for a walk, you don’t know that you’re not going to fall over or you’re, somethings going to happen. You’re scared.

The one thing they tell you, that scares you a bit because when you, before you leave hospital, they say to you, ‘Now you’ve got to, you’ve got to walk. It’s important that you set yourself goals so when you get home and you start to walk, do a little walk, a little bit one day and then the next day maybe do a few more steps. But always make sure that if you’re going on a walk that’s a little bit longer, make sure there are seats so that you can sit down. That scares you a bit because you’re sort of thinking, ‘Oh dear, you know, I’m not going to be able to go anywhere where there are no seats, you’ve got to have seats everywhere, you’ve got to sit, always be able to sit down. That is scary and so going for a walk suddenly becomes a big thing. I miss walking. I think more than anything I miss walking. I can’t walk very far and I miss it. Having a dog I think is a really good thing because I had to go out every day, even if it’s just a tiny little walk down the road, I’ve just had to do something and that has made me push forward. I feel, in company, I feel’ I don’t know how to describe it but this, it’s this feeling of confidence. Whereas once upon a time I would have been able to stand and feel quite OK, quite confident about everything, I’m not any more. I’m thinking all the time, ‘Am I going to be able to stand here? Will I be able to sit down? Is the pain going to be really bad? Am I going to start perspiring?’ Everything. You’re thinking all these things all the time. So complete lack of confidence really. I don’t think you ever get that back. I think that is one thing that goes completely. You’re very aware that you’re physically abnormal.

Yeah. Again, my sister-law, the GP, when she saw me about a year ago, she made some suggestions as to what I could do and that was one of the things. I was beginning to feel a bit depressed and she suggested a cognitive behavioural therapist and I did go to that a few times but I didn’t think it would help very much.

What sort of things were they doing at the, the therapist?

Oh, just basically talking to me like we are now, a bit like that. But since then, my GP has arranged for me to see a psychologist via the NHS, which is quite impressive because usually it takes ages to see these people and I’ve seen him a couple of times and hes given me some, well, he did some diagnostic tests first of all which I never got with the CBT specialist and he said it wasn’t so much depression it was anxiety more than depression.

What sort of things do you feel anxious about?

Well, anything that’s a bit sort of, that is going to require me to you know, to tackle something that I might not be up to, you know, even if I get several things in brown envelopes in the post in the morning, I think, ‘Oh what on earth this, is this something that I have to cope with’, you know, forms the tax inspector or anything like that, I sort of think ‘Oh’, you know, ‘I am going to have trouble coping with this’, although I don’t actually seem to have it, I do actually have had forms from the tax inspector and I have managed to reply and write letters to people and that sort of thing, so I am managing to do it but it doesn’t alter the fact that I do worry, I do sort of feel concerned about whether I’m going to be able to cope. Whereas before, I used to consider myself a great coper. Also, I was a great planner. I loved planning and I had a great sense of time. I always knew what the time was and how much time I’d got to do things and I worked things out so I didn’t have to do anything in a, in a rush. And that’s something I did a lot of and enjoyed. I can’t do that. I don’t do that any more.

So you were saying about how the strokes affected you emotionally?

Well’I was’ one time I was at a Christmas meeting where the minister was singing songs andhe came out with a song, song that I couldn’t just bear for him to sing it. And you know what it was? It was’ I can’t mind what it was now that, that one with’ I can’t just think what it was.

How did it make you feel when he was singing it?

I just told him stop because I couldn’t listen any longer and it was nothing wrong there ‘Oh’ he said, ‘You’re not the only one that happens to. ‘But’, I said, ‘Well’, I said, ‘You can go, you can go ahead now and I’ll try and have a cry. But I actually cried. And he was singing this song anyway but I just couldn’t bear it. And it really was’ it wasn’t nothing to cry about either but I couldn’t help it.

Do you find that with other things that, that suddenly upset you for no reason?

Oh yes. There was other things and it would start the same way likely but it has, I was at a wedding once and it was the same thing there. They started and I just, I couldn’t do nothing about it.

Do you understand that that’s part of having a stroke?

Aye. That maybe came with the stroke, you see.

Has anybody explained that to you?

No. Nothing, never.

You know, we talked earlier about sometimes people worry that they could become more emotional?

Aye. Oh yes, well that is a problem, I’m sure but it’s, but it, it’s alright, people get to know you and understand that this is all part and parcel of the, of the disease and it will perhaps get better, I don’t know but he said it would, it would be a long time, it would bother you for a long time, the doctor, and he was a very good doctor on strokes and the first thing he said to me, you see, so it’s obviously, must be something that even the doctors must know to tell you so that you’re prepared for it, you see. So as I said, otherwise, I think it is getting, it is getting better now a bit but oh, when you come home, when at first it was very easy to break down but it gets, it is, it is easing off now and as time goes on. I think a lot of it too depends on what’s happening in your life.

it’s something that’s bandied around as if, Oh you might suffer from depression if you’ve had a stroke Well, you might. But it’s not so much the clinical effects, it’s the fact of having your life hit the buffers. (You’ve died without dying*).

I mean, there’s nothing wrong with that, there’s nothing sick about that. I mean, anybody can be depressed about anything… It doesn’t mean that they’re depressive. It just…means they’ve had an enormous problem to deal with in their life. I mean, if you lost a baby or something like that… you would be depressed. Not just clinically but the (actual) trauma.

Exactly.

And I think that people need to remember that’s the case with stroke. That people are depressed because they’re shattered. (They want support not antidepressants*). They have to adjust to this enormous, profound… (sudden) change.

*text added after the interview by Ralph.