In 2011/2012, I was fortunate enough to work as a therapeutic playwright ‘in residence’ with the Stroke Association in Bristol and Bath & North East Somerset. Working with people who were stroke-affected, and their partners and friends, we co-created five short plays, with which we aimed to convey and communicate the experience of living with stroke using participants precise words.
One participant had been virtually aphasic (without speech) since her stroke, and her husband had largely conveyed her story in the workshop – however, when the script was complete, the woman astonished us all by reading her own part aloud to the group. Tears were shed by us all. We marvelled at how the brain and the sheer will to self-express can collude to make seemingly impossible communication occur.
You can download the pdf here: Life After Stroke 5 Plays 8jul13 – or read the unformatted version below. If you would like to perform the plays, please do get in touch with me at arabella.tresilian at gmail.com – I will be thrilled.
Life After Stroke
By Arabella Tresilian, Hemisphere House
In association with the Stroke Association, UK
These five plays are ‘verbatim’ plays, using the actual words from interviews with stroke-affected people and their carers undertaken during Therapeutic Scriptwriting workshops at the Stroke Association’s Exercise and Lifestyle classes in the Bristol and Bath area.
Grateful thanks to all the participants and to the Stroke Association.
Couldn’t Utter a Single Word, But I Could Sing……………………………………………………. 3
White Spirit…………………………………………………………………………………………………….. 7
Hand on Heart………………………………………………………………………………………………. 10
It’ll come in a minute…………………………………………………………………………………….. 13
Still Here………………………………………………………………………………………………………. 17
Couldn’t Utter a Single Word, But I Could Sing
A one-woman monologue based on the accounts of
six stroke-affected people and one carer.
Keynsham, 9th February 2012
In stroke terms I’m one year old. I had no movement on this side of my body, I was like a child… so I’m one because I’ve advanced to the abilities of a one year old. You’re reborn again. This side, it more flops about more than it is controlled, not a great deal of strength, but I do have some control of it compared to a year ago.
I didn’t even realise I’d had a stroke until they told me in hospital. I’d had a splitting headache for two weeks. So, a bit of a shocker. Isn’t it? I thought I was going to get over it quicker, but it’s going to take time. I felt like I needed to be there for my family but I couldn’t be, so that was quite hard. I didn’t know if I was coming or going really, and still don’t really understand it all. What happened. The whole package. There’s a mystery around it all for me.
There I was, I couldn’t speak, I’d lost all my balance. But then I discovered, I could sing! I couldn’t utter a single word, but I could sing. I was humming to myself, ‘Somewhere over the rainbow’, humming to myself…! When I realised, I started crying. I could sing! I come from a musical family – I used to play the piano. I’m starting again. I’m getting there – it’s a struggle – I have a piano at home so I do my scales. I’m getting there. I believe the brain can reconnect itself. It doesn’t matter in what time.
This is one piece of advice I would perhaps give you and that is not to worry about time but to spend time, perhaps for the first time in a long time, on yourself, on concentrating on getting yourself better. And to try and do as many things as you possibly can. It is incredibly tiring, the amount of brainwork it takes to get things done – don’t be hard on yourself just have a rest and then you can try again. In the beginning, definitely sleeping helps. It takes time for your brain to reconnect, for your body to obey your brain. It’s a bit rude, but my brother said when I could give someone the bird, then I would be on the way to recovery. I opened my hand out and he said, ‘Go on, show me your middle finger!’, and I strained and eventually did it and he was cheering!
My brother’s wonderful. But generally, nobody knows about stroke and what it does to you, so nobody knows what to do or how to help. It’s very difficult for families, especially if you have young children. At first I didn’t let my son into the hospital because I didn’t want him to see me as I was – I referred to myself as a vegetable, and then as I got a bit more mobile, as a jellyfish. When I was inanimate, on the ward, it wasn’t just me there, it was all the other people – who obviously were recovering at different rates – it would have been very distressing for him to see not just them but his own mum too, not being at all well.
Sometimes, I just shut it out and then I don’t have to think about it. I don’t think about it, but when I talk about it, it brings it all up. After the stroke, I was angry so I pushed people away. We hurt the ones we love. There is an anger – why did it happen? Why me? And your life flashes before you, you know, like you’ve died, and you’ve been reborn. And you don’t know how much mobility you’ll get back. I lay in hospital for a while writing myself a bucket list of what I could still do. I thought either I lie here or I get on with it, and having children, just lying there wasn’t an option really. So I just had to get on with it, and I’ve moved house since and all sorts… with difficulty, but you know all these things you have to do in life, it’s perhaps made me stronger. Nonetheless, it’s disappointing that having done all that I’m not fully better yet but the fact I’ve done so much has probably helped.
I had people say to me, “Oh well, what you don’t get back in the first six weeks you’ll never get back”, which is quite scary and also, not true. So I was in a mad panic and even though it took me a long time, in those first weeks, I tried to do everything I could for myself. Just things like having a shower and unscrewing bottles and the movement of cleaning myself, it took me absolutely hours. You have to really concentrate, because it takes that much effort. I was famous in the hospital for the water escaping from underneath the bathroom door. Just spend the time…you can only do things really slowly.. but I think its important to give yourself that time. Some things, I didn’t know where to start, even just picking up the shampoo bottle, you’d pick it up but then have to concentrate on just holding it, otherwise your hand just lets go and it’s gone. And then you’ve got shampoo all over the place!
There isn’t so much time in the day after you’ve had a stroke, because everything takes so much longer. You plan to do something and you get about half way through and the day is gone. I get pleased with what I’ve done and that cheers me up. At the end of the day, I tend to think, what have I done today and I say I’ve done that and I’ve done that, that was good. But I do get frustrated I must admit. I don’t think you can help it. So another piece of advice I’d give is just don’t be hard on yourself. If you get to the end of the day and you can remember what you should have done, well, don’t worry about it. It’s not worth it. Let it get you organised and motivated for what you can do the next day. You’ve got to think about doing things more slowly. You’ve got to focus more, concentrate more. Little things around the house, I’d tend to try to do things and I’d stay there until I got myself worked up, instead of walking away and going back and doing it again after a while. Cleaning is quite physical – vacuuming and wiping things – the physiotherapist when I was in hospital said those sort of movements are good for you. Being active gives you a sense of self, it’s part of moving on.
Before I had my stroke I’d be reading two books at a time.… now I can read two and a half pages of a book, but really concentrating. It’s my memory. I get to the end of a page and it’s gone. I try to read at least one page every day, but my mind gets really tired. The other day, I read three pages, and I had to go to bed, because I couldn’t see anything after that. It was too much for me. And it’s the same with talking, when I’m trying to explain something, I can’t, it stops. And that’s it. Some people though, they read more since having their stroke, because it is something they can still do, and they can do it sitting down and they enjoy it, reading about other people’s situations, and their emotions, learning a good deal about life as they read the story.
People look at me on a good day and think there’s nothing wrong with me, but it’s up here. You have good days and bad days. There isn’t a definitive manual, just perhaps general principles. It’s good to have family members who can coax you gradually, who can push you a little bit, when you are low or depressed, to do the things you need to do, like exercise. People who can be hard and loving at the same time. It’s good to be in the same room as someone else, even if you are doing different things. It’s hard for both parties. There are times when everyone cries, when the frustration gets too much and you take it out on someone else. But as long as you say sorry at the end..!
Your family members need to look after themselves too. Take some time out for themselves, because it can be a long haul. They need to go off and do something that gives them a break from the bedside or the worry. Sometimes they’re faced with losing the person that they knew before. So they need to seek people who can support them with their feelings of loss or sadness.
Your life changes completely, but there is a new road to discovery. I have discovered how stubborn I am about getting better! Look after yourself, not just in a physical way, but in an emotional way. Some of the things I do now, like not being so hard on myself, I wish I’d done before. I could blame the doctors, who didn’t do the tests when I went in with my headaches over those crucial two weeks…but why should I? The doctors just gave me painkillers, when they could have picked up I was having a stroke. But you’ve got to accept that. When I think back to the early days I can do so much more now. And I have found it has brought out the kindness in everybody. Everyone is so helpful, so sensitive. Everything has got still to carry on, but you must do it at your own pace. Make the most of your life, see it as your chance. I feel I was rewarded by survival really, because I could have been… gone. So now I’m on the other side, I fight for it.
With warmest thanks to Olive, Peggy, Elizabeth, Sheila, Michael, Rebecca and Daniela – your inspiring words and hard-won wisdom were a privilege to listen to and share.
A one-woman monologue based
on the accounts of six stroke-affected people
[To audience] They say you should keep healthy to prevent a stroke; well I had just lost four whole stone, [to husband, imagined beside her] hadn’t I? Walking, gardening, hill-walking, travelling. And the weekends were spent in the caravan. We weren’t stay-at-homers. We were really active and nothing could stop us.
Well, that morning, I’d been painting the ceiling. It was my grand-daughter’s birthday party that afternoon, so I cleaned the paintbrushes and drove over to Clare’s, my daughter’s house. I pulled the car up at the curb and went to get out, but my leg wouldn’t come with me. I thought, ‘That’s funny, I’ve got a dead leg.’ I felt a bit dizzy and I said to myself, ‘That white spirit went right to your head.’ So, you know, I just pulled my leg out and headed towards the house. Two minutes later, I am walking up a garden path, and I’m thinking to myself, ‘Clare’s got new plants pots. I don’t remember these!’, when Clare’s friend, Rachel calls out to me, ‘Eileen, where are going? You’re at the wrong house!’ Well, I was too. We laughed. I’d been a Girl Guide leader for 30 years, and here I was lost as can be on my daughter’s own street.
We got to Clare’s just as they were singing happy birthday. I’m eating some birthday cake, and my daughter says, “Mum, you’re not eating the cake.” Not eating it? Well, it’s true, I wasn’t swallowing it. It wasn’t going down. And I was talking slurred, as if I was drunk. We were all First Aiders in the family, we should have known. We’d seen it on TV. ‘F.A.C.E.’ How stupid we were! But, you see, I thought it was the white spirit. And I seemed to come back round. So I took an aspirin…for the headache.
Well, it was later that evening, when I had been sick and had lost the feeling in my hand too, that I phoned NHS direct. They asked me a barrage of questions, pointless really, and eventually I said, “You see, I think I’ve had a stroke, and I’d like to talk to a paramedic.” I could hear the women on the end of the phone pause and breathe in. “The paramedics are very busy,” she said. “But I’ll see if one can come out to you.”
Three hours later, an ambulance came to the house. At the hospital they said, “It seems that you’re having a stroke…a big one.”
Everyone blames each other, you see. Why didn’t we phone 999 immediately? But, at the time, you don’t think it’s a stroke.
The doctors were amazing. They gave me a clot-busting injection, though it was really too late. I took it, but it didn’t help. And quietly, as the stroke took over, I slipped away into unconsciousness.
For two weeks I knew nothing. Nothing. [To husband] You just sat by my bed, didn’t you? For ages. And when I eventually began to come round, I couldn’t get the words out. They asked me questions, and the answer that came out was the opposite to what I wanted to say. I felt so helpless. The words just wouldn’t come out. I could understand most of the questions, but the answers got stuck in my head.
The noise on the ward was so difficult. And the fact that we were so helpless. You’d ring the buzzer, and sometimes no one would come. You’d need the toilet, but you couldn’t go on your own. And no one would come. You’d see the nurse take a peek, and then go away. If you weren’t dying or on the floor, they’d just leave you to it sometimes. One lady asked for a complaint form, and the nurse said she’d bring one, but it never materialised. And when her daughter went to ask for one, she was told they’d been taken away.
I did physiotherapy every day if I could. They’ve got twelve weeks to get you fit enough to go home, if you are lucky enough to have family to look after you at home. I was told at the hospital, “Your family have said they are willing to have you at home.” It gave me such a shock. I couldn’t imagine otherwise, but there are families who can’t, or won’t, look after their relatives after a stroke.
I’m back at home now and I’m starting to feel a bit better. We put a banister on both sides of the stairs. At first, I’d be just kicking the step, I couldn’t lift my leg. But [to husband] you said, ‘Just stand still, and get your foot up.’ And eventually, I did. It’s down to teamwork, you see. And not giving up. It’s so easy to lose confidence in yourself. But I started going to the Stroke Association’s lifestyle group at the sports centre where they have talks about stroke. We start with an hour of exercise. At first, we all stayed in a room off to one side, but now we actually go into the gym and use the equipment. It’s that sort of thing that gives you your confidence back.
At first I felt angry, really angry. Why me? Why a stroke? But I understand more about stroke, and in understanding it, the frustration starts to go. I feel calmer now. We’ve even started using the caravan again. Last time we went, the car needed driving across the field. It was empty, so my husband says, you drive it over. And I did. You see, I’m proving to myself that I can do things I’d thought I’d never do again.
And my speech is coming back, at its own pace. At the group, we had a theatre session. The director came in and introduced herself to me. She asked me my name, and my name wouldn’t come out: ‘Ei… Ei…’ Eventually, [nodding at husband] he says, ‘Eileen. She’s called Eileen.’ The session starts and they want volunteers to read the script. Other people in the group read, and then, when they want one last volunteer, [nodding at husband] he goes, ‘Eileen’ll have a go. She can’t always talk in conversation, but if it’s written down…’ So, they put the script in my hand, and… I start to read, out loud. It all comes out, sentence after sentence. My brain is picking up the words on the page and the words are coming out. I look up, and everyone’s amazed. Eileen? But she can’t talk! Some of them have got tears in their eyes. You see, there’s no second-guessing stroke. It leaves you with a million possibilities, if you are game enough to try.
And that’s why I’m reading this, my story, to you now.
With thanks to the wonderfully expressive group members whose inspiring words, phrases and stories form the content of this piece.
Hand on Heart
Six short monologues based on the accounts of six stroke-affected people
Midsomer Norton, 24th May 2012
February the second, two years ago this next February. I got out of bed and went to the bathroom and I just couldn’t stand up straight, I kept falling to the side. The hairdresser comes that day and always I open the gate for her. That day she noticed that gate was shut, and then she looked at the breakfast table through the window and saw that my breakfast things were still on the table, so she went running round to her mother and got my front door key off my friend. The next thing I knew the ambulance men were there.
I would say, don’t give up however hard it is. It’s hard. Very, very hard. It cuts down your life terribly really, for going out and things, especially if you haven’t got someone. I think… you’ve just to go on with your life and get on with it.
It was July of last year and I walked into the hospital and said at the desk, “I don’t feel so good, I think I’ve had a stroke.” And they kept me in for a couple of days. I think probably I’d had one the previous month, but I hadn’t recognised it, but the second time I didn’t feel too bright and I was wrestling in the middle of the night to get my dressing gown on and the arms wanted to go through the head and the head wanted to go through the arms… So that was that. I stayed in for a couple of nights and then came out. The rest was just rebuilding my life from there.
I had several people from the Stroke Association coming in the early days, and they still do, but apart from that it’s been something I’ve had to tackle on my own. I suppose I am strong in that respect. My children have their own lives and the last thing I really want to do is worry them. I think the stroke has made me determined to beat it – it feel it as something to be beaten. I will fight it. I’m determined not to have another stroke. Although I detest having to take the medicine, I suppose it’s inevitable really, I’ve got to take it, but I’m determined one way or the other, to try to find alternative routes by exercise and by eating the correct things, and to try to eliminate and reduce the dependency on the medicine.
Learning to have communication without using only words. People who listen. I can commiserate with you, being on your own. I feel for you. The words come and they go again. When emotions come, the words get harder. Everyone’s so wonderful. You’re so lovely. You are. Everyone is so kind. Listen. Listen.
I would say, understand the carers. They are all such wonderful people, they really are. So helpful. Professionals come to my home two times a week, from the Stroke Association or the local authority. People need compassion and understanding, the understanding of the family situation, and the victim, and the carers in particular. Before the stroke I was a very active person. I’m one of the most impatient people you’ve ever met, so not being able to do things, I find very difficult. Doing up shirt buttons… My wife does so much for me; it’s very difficult for her. It can be such a long turn, and carers need patience, and tolerance too. I don’t think at the beginning you realise how long a road it’s going to be.
I didn’t realise I’d had a stroke for sometime. I was on holiday in March and I’d had a couple of falls while I was on holiday and didn’t think much of it. I came home and was treated for a while with depression, and the months went on and then just before Christmas they did a scan and the stroke showed up on the scan. So I’d gone from the March to the December not knowing I’d had the stroke at all. And I’m only now having treatment for the stroke. So it took me very much by surprise really. I’ve had other health problems too, some related to the stroke, and others, I don’t know if they are due to the stroke. I’ve lost my sense of taste. I’m not sure if that’s because of the stroke or something else. So I have to try and be positive about myself and it’s not always easy. You just try and learn to deal with it day to day – without too much trying to grumble about it all the time!
I find it nice to be able to share things sometimes with other people who have had the same, or similar experiences, so you are not on your own with it; they have an understanding about what’s going on. There’s a sense of togetherness. You’re not in it alone. You’re sharing with others.
4.20am. I jumped out of bed to go to work and there were no legs there. I fell on the floor and, for the next four hours, until the policeman knocked the door down, to get me up, I didn’t know anything. My deputy at work had arrived at work and found my work had not been done – ‘cause I usually start at 5 o’clock. He’d turned up at 8 o’clock. Because I’m diabetic, he’d thought I was possibly in a diabetic hypo and he’d called the police. They’d arrived with a paramedic at about 8 o’clock, just gone, and for two or three days after that, I don’t remember what happened. But apparently, I nearly died. Apparently, a lot of us do.
You have to be patient and you have to be really, really strong, because you get really easily depressed which I did. The only good thing I would say is that I lost 5 stone. I wouldn’t recommend it as a cure for being overweight!
I want to say something about the people who care for us. In the last couple of years we seem to have heard a lot in the television and the papers about carers who haven’t been good. But I can say…hand on heart…the care I have received has been brilliant. They are caring people who don’t get enough attention for what they do for us. That is the most important thing, the doctors and the nurses, physios, they all help to get us back to here, where we are. If you had seen me two years ago compared to what I am like now… I am like this because of what they have done.
The carers don’t know me. This is the thing, nobody knows me yet they are willing to give their time to make sure… to mend me. That is the main thing – they are trying to mend me and push me back out as soon as I can go. And you can’t really put that into words, what it means.
With thanks to all the participants who shared their experiences and insights, and to Sheila Davies, Sarah Miller and Lindsay Simpkins at the Stroke Association
It’ll come in a minute
A two-person play based on the accounts of four carers
of stroke-affected spouses.
Bath, 19th Dec 2011
I said to him, “We’re going to laugh and cry along this journey.”
He wants to tell you something. He starts and he can’t get it out. I say to him, “Take your time, it’ll come in a minute.”
I think, when the professionals tell you that things won’t improve after, I think they said, eighteen months, two years – well, that is absolute rubbish! Don’t set any time limits. It may be a very small improvement, but things change constantly, and sometimes they get worse, sometimes they go back, sometimes they go forward. I mean the basic disability we recognise won’t go away, but just small changes take on a very great importance.
There are so many that are told, “Listen, that’s it.” But you see someone over two, three, five years and I can tell you as I sit here, that people improve.
People often think they are being realistic, whereas in fact it’s not realistic because brains do recovery. On the frontline, you actually see it; and it’s only now, with the ideas about neuroplasticity, that they’re coming up with the research to say it’s actually happening.
We call Laura ‘Britannica’ sometimes! It’s all still there. When she had her stroke, she was studying Biology at the Open University – she was in her last year. And now, she’ll watch TV, like Frozen Planet and she remembers it all, the names of all the animals…and in a way, that makes it worse.
I was working at the time of the stroke. I took early retirement to be with her. You’ve got to be a lot more patient. It is extremely difficult. There’s the frustration with the person who can’t communicate too.
You need to be prepared to do many things you perhaps never did before, whether it be ironing, washing, making a bed, assisting all the time, making sure that if they are out with you that they are holding hands with you, because in my case she does drag one of her legs and so quite often trips. So it’s about doing many things you didn’t do before. Getting a cover on an eiderdown.
In the hospital, we had a particularly arrogant consultant, a stroke consultant, that’s all he did, was strokes, I think for too long. And when I look back know, Laura was unconscious for (cries) two weeks, and he said, “Oh well, we’ll have to put a peg in her stomach if she doesn’t eat within two days.” He was so arrogant. I found a complete difference between the nurses… I mean I know they’re criticised… but I found particularly the head nurse, the matron, was very helpful. She was practical, down to earth, and a complete contrast to the consultant who…well, they think they’re gods don’t they?
Fortunately, neither Laura nor myself had had any contact with hospitals, so this was a completely strange environment for me and was this guy in charge and you do tend to … well I have an aversion to people in authority… but this guy’s dealing with people who’ve had strokes, all day everyday. But he was just so clinical. We had a review meeting, and unfortunately my daughter came with me, and it was just so dispassionate. Impersonal. I know he shouldn’t give you false hope, but it was the opposite.
Mind you, my husband didn’t even see a consultant. This was six years ago. He lay in A&E all day, til 11 o’clock at night, for lack off beds. Well eventually, he ended up on the only bed they had, in the orthopaedic ward. And there he stayed. And nothing was being done and I’d keep going to the Sister and asking what was happening, and she’d say, “He’s nothing to do with me. This is not a medical ward, it’s an orthopaedic ward. He’s not my patient.” And I’d say, “But you’re the Sister on the ward, so why has he not seen someone?” This went on for three or four days. One orthopaedic doctor, who was a neighbour of ours at home, came to see the chap opposite David in the ward and turned round and said, “What are you doing here David?” I explained, he’s not seen anyone. He said “Leave it with me.” He went back and found David’s notes from his heart attack. And the heart specialist came up to see him… But he never ever went on to a stroke ward or saw a stroke specialist. He was in hospital for two weeks. Any window for treatment, early intervention was closed.
Laura was put on the medical assessment ward, mixed at the time. People exposing themselves left, right and centre. No one gave her any help, no one was there to feed her, she was just left by herself. And even when she left the assessment ward. There weren’t any stroke wards in those days. So she just went from one ward to another. That was it.
David was not treated at all. He was in a medical assessment unit with the lights on all day and night. I was thinking, I’d have been better off at home, because I could have rung the doctor. That’s what I thought standing beside his bed, and I’m talking about standing beside his bed for days, thinking ‘I’d be better off at home, because I could ring the doctor.’ It was worse than I can possibly say. The most dreadful experience. And he was getting a temperature. And I managed to find a nurse with great trouble, and she said she would get him something, actually he couldn’t have swallowed so I don’t know what she’d have done, but she never came back. It was the most dreadful, dreadful experience. However, it’s much better now.
When he came out of hospital, he was half-blind, couldn’t move his right side so in fact had to be in a wheel chair, couldn’t speak at all, he couldn’t see because he wasn’t merely half-blind, he had double vision, he couldn’t read, so was in a sense completely cut off. Anyway, a couple of weeks ago, he walked down to Marks & Spencer’s and bought himself a pair of pants. (Cries) It may not seem much, but to me it’s a miracle. He walks to the stroke communication club by himself. And back again. I ask myself, how many years did that take? Six. Six years. So things do improve.
But, equally, we’ll have our lunch and then at about half-past two he’ll say, “Well aren’t we having anything to eat today?” I’ll say, “We’ve had lunch” and he’ll say, “Well, what did we have?”
On the day of the club, I don’t have any problems getting Laura up. If we’re not going out anywhere, I can’t get her up until one o’clock, half past one in the afternoon. She’s motivated to come because she does appreciate mental stimulation. Laura is very competitive and being asked a question that’s a challenge to her, and no doubt you’ll find she does interrupt, because she can’t wait.
Fortunately, my wife was always the one that wanted to travel. She had plans for two or three foreign holidays a year when we retired, and I was the one that was happy pottering in the garden. Which looking for something positive, at least, while she’s in bed til one o’clock in the afternoon, I’m pottering in the garden and doing some do it yourself. I just have to keep looking through the bedroom window to make sure she hasn’t tried to get out of bed, or fallen.
There’s one thing we haven’t touched upon, but that concerns me… and that is that it is desperately important that I outlive my wife. (Cries)
Yes, you lose your life, don’t you?
With grateful thanks to the carers who shared their experiences so openly and generously.
A three-man play based on the accounts of three stroke affected men.
Bath, 11th April 2012
This is a second visitation for me as I had a major stroke five years ago. I showed something of a recovery at the time but I went back to work probably too soon and found myself having greater and greater difficulty coping with my work which resulted in my nerves really coming to the end of their useful tether, I think. I had to give up work and basically rang up the Stroke Association and said ‘Can you help?’ They are helping me to enjoy a belated rehabilitation. Part of my nature is being stubborn – I didn’t deny the stroke, but I was definitely evasive about it and tried to minimise its existence and carry on as before and that became a bigger and bigger mountain to climb until I slid right down to the bottom of the mountain again.
Mine was a minor stroke, a TIA, four months ago, and in fact looking back I suspect I had probably had two or three minor ones in close succession in the week previously. The actual stroke itself didn’t seem anything to me. It was my friend who recognised the symptoms and I was taken off and diagnosed in hospital. It was somethingwhich was totally unexpected because I had always had an active and healthy existence. The main characteristics affecting me have been quite a prolonged spell of weakness and tiredness, but I am making great progress with getting myself back on my feet.
It was ten years ago – the brain just shut down. A stressful event and later there was a confrontation outside the supermarket coming home after work – and I didn’t realise but that blew me over the top. When I got home, I thought I was fainting, caught myself, pushed myself up again, started to go again and then I don’t remember anything til I woke up in bed the next morning. I couldn’t talk – I talked to my cat and it came out like rubbish. I didn’t know what was wrong with me. I couldn’t use the phone or anything. Numbers, letters, nothing made sense. Where do you find the alphabet? Most people say on the computer – but it’s not there! For a start it’s Qwertyuiop on the keyboard, and yes, there’s a spellchecker – but no alphabet. I tried to type out the alphabet and I got halfway through and I stumbled and couldn’t figure what was next. I’ve got a very investigative mind – I was proactive before they invented the word. But I couldn’t find the letters on the keyboard.
My initial reaction to the stroke was one of disregarding it, minimising it and trying to carry on as normal, as how I was before, and that strategy of mine failed. It was the wrong strategy. I chose the wrong way of dealing with it, and hindsight now tells me – and this is how I shall be approaching things in future – that I should have viewed the stroke itself as a ‘change of life’ event which requires a reassessment, a re-evaluation, of all things. It could be values, it could be goals, it could be intentions, it could be relationships, it could be anything and everything which is of importance to you. It all needs re-evaluating. To ask what is important; and what is not.
You need to take things slowly and be patient. Take it day by day and do what you feel you can do in each day; don’t try to do more than you feel you can do. If you feel you need to rest then rest; if you feel you need to talk to somebody on the telephone then just do that. Just, see how it goes. My friend says to me, ‘You have to accept how things are. You are able to walk down to the town centre and do a bit of shopping and you’re in your eighties. Bath is full of people who are octogenarians and they can hardly move! Even though you’ve had a stroke, relatively you’re a fit person!’
The most important thing is, we’re still here! I know it’s easy to say to someone who’s just had a stroke, but we have have been through it. I know it’s a dreadful Monty Python thing, ‘always look on the bright side of life’, but… we’re still here! I kept nagging my GP and saying, “When can I go back to work?” He’d say, “Oh, don’t worry, don’t worry for now.” And eventually, when he probably thought I was strong enough, he said, “I’m going to have to tell you, you’re never going to be 100%, so forget about going back to work.” And I think that hit me. It was like being made redundant times 100, probably. I’d had a job that I’d really enjoyed; of any of my jobs down the years, I’d never had a job that I’d enjoyed so much. But there we are – all good things come to an end. But humour, you’ll see the humour in me, and that’s another important thing. Jokes keep us going. Initially, I said to my friends ‘Wait up, it’s my slow brain!’ and I’d laugh at myself.
When it first happened to me, the infrastructure didn’t exist as it does now. Now I receive regular visits from the Stroke Association’s Care Coordinator – and she is a marvellous support helping with various forms and paperwork. It is also a comfort for me to meet other people who have had a stroke – we have shared experiences which in my case are not experiences which I share with my peer group or my family or anyone outside of this environment. So, it is something valuable to me.
The Stroke Association’s classes have easily been the most effective and most productive factor for me in my rehabilitation. Plus the fact that my friend encourages me to make an effort and get out, and go for a walk around the local area. As a result of that I am doing much better in mobility now than I was a couple of months ago. Still a long way to go but I feel that there is progress. If I do go out shopping, afterwards I ask myself, ‘was I able to visit several shops in the one trip or did I have to restrict myself to the supermarket and then get the bus back? Or was I able to go on to the bank, or to two or three places? And if I was, then I feel that I am really achieving things.
When I’m fatigued, sometimes my words come out as rubbish. People don’t sometimes understand why you take time to get the words out, so I made a card to use at the shops that says ‘I have had aphasia, give me time.’ It helps, except when you are on the phone to one of these helplines because you can’t hold it up to them! You say, please can you speak more slowly, and they just talk at the same rate but louder! Sometimes, in the rush of life, people get impatient with you, but I think to myself, I know more than you know because I know what may be lurking round the corner for you. I wouldn’t wish it on anyone.
A psychologist came out to see me and I was worried that she would have preconceived notions that anyone who had had a stroke would automatically be very depressed and very dependent on some sort of support. She encouraged me to write down goals, and then would come back to check on me to see if I had done them! It wasn’t a bad idea and I think I probably learnt something from it. I said to her, I don’t think I’m really depressed; I have my down days when I’m down in the mouth, when I’m a bit despondent that I’m not making better progress, but I don’t feel I have to rush off to my doctor and ask for antidepressant pills. So she seemed quite happy to let me get on with it.
Initially, it was a male ego thing: I had to swallow a huge amount of male ego and admit that I couldn’t cope. And that was something that I battled against for a long, long time. That was hard. Archetypal man. People responded surprisingly well. My family and GP have been very supportive. I did become very depressed at giving up work, which is a large part of life for most people. It certainly was for me. Suddenly it’s not there anymore. And I wouldn’t call it a bereavement as such, because I didn’t love the job that well, but it is still something that was lost, that I no longer had. That required some adjustment. The stroke has made me rethink my life, my position, and my way forward in life, and what’s important to me, and to minimise things that I could have made more important than they actually were. In the main I am a lot happier opening up than I used to be – it’s risky, and that’s always the fear for people who don’t open up – and I don’t imagine anybody sees all of me, or all of me all of the time – but, I should think that’s probably fairly normal.
With thanks to participants, Conway, Brian and Philip, and to the Stroke Association’s Sheila Davies.
(c) Arabella Tresilian 2013