Attitudes to injury and life afterwards

People we interviewed said their injuries had changed their lives in both positive and negative ways. Whilst they often had ongoing challenges that caused them to alter the way they lived, many reflected on how the accident or injury had led them to re-evaluate their lives and appreciate things they had taken for granted before. One man with brain injury (Interview 23) said that he has experienced more highs than lows.

Aiden explains how his life has been changed both for better and worse.

Age at interview 25

Gender Male

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It has changed my life both for better and worse, my quality of life has decreased because I am in pain every day and I have much less prospects for the future, so there is more uncertainty. It hasn’t really changed the way I see my body even though I look different, I do sometimes forget that I have the injury. At the same time my life has improved because the injury has forced me to examine myself and my life and I am now doing things for the greater good – I am now involved in environmental activism which I wasn’t before which is what I feel my purpose in life is. I feel less self-centred than I was before and can the world clearer, so I feel like I am “richer” intellectually even though I am “poorer” physically.

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In the early days, people wondered why it happened to them, with some wondering if ‘it was God’s will’ (Kenneth). Sometimes they wanted to give up because they felt they were going to be a burden to their families. But they acknowledged that feeling depressed and down was a natural reaction to what they had been through, even though these feelings made life harder.

Rob said that he was heartbroken about losing his sight, but he says this is probably a healthy…

Age at interview 24

Gender Male

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How would you describe the emotions you experience?

Tough. it’s almost a physical pain. No, it’s kind of like being heartbroken sometimes. Like you’ve, that you’ve lost your sight, you know. You get a feeling in your stomach and you’re just, oh God, you know, .You start asking questions like, why me? And all this sort of stuff, and you know, it’s just part of the process of grieving of grieving, I suppose. You know, you get that tense feeling round your heart, and yeah, nervousness, anxiety, depression. it’s just, it’s part of the grieving process and I think it’s healthy to go through that. I mean if you went through something like this and you were upbeat and positive the whole time, I think, something might be broken in your brain, [small laugh] I think. Yeah, I think it’s quite healthy to feel these feelings sometimes.

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Sometimes people discussed a turning point when they realised their lives weren’t over. Some felt happy to be alive, and luckier than others whose injuries were more serious than their own. They felt they could learn from their injury experiences and found the good that came from them.

Getting into his wheelchair for the first time after his amputation showed Bill that recovery was…

Age at interview 57

Gender Male

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Bill:They got a wheelchair and the independence of mobility again was, was amazing.

Catherine:In the wheelchair.

Bill:In the wheelchair yeah. Just being able to control what you do again in life. You, you lose control and when you’re totally reliant. I feel very sorry for people that are quadriplegic or, you know, very badly paraplegic how, you know, if they are reliant on people to do things for them. It is so demeaning, you know. I can understand now, why disabled people will totally and utterly reject help unless it’s absolutely necessary, because you’re better [laugh] to try and do it yourself, because you’re trying to think through the problem and it’s, sometimes the problem is insurmountable. Which is fine, you know, you have to get in your own mind, past that as well. You’ve got to accept the help that is absolutely necessary and for a lot of people that means a lot of things, and for some people it means nothing. It’s all your own particular personal journey in getting to where you’re going.

Yes, so tell me about actually getting the wheelchair and that process.

Bill:Well the physio got the wheelchair.

Catherine:She measured you up.

Bill:Yes, I mean whatever the technical things. You get the wheelchair and there it is next to the bed. And first of all you, you’re wheeling around the ward because you have to comply with what they want you to do, I thought, I was so naughty, I was so naughty I’m pretty sure I said I’m just going out of the ward, just, just going down the corridor, you know, through that door, and they went, Yeah, but don’t go very far. I went, the hospital was enormous. I won’t mention it, but it was a very large hospital. I just wheeled and wheeled and wheeled and wheeled. I was trying to find the outside and it was really difficult to find the outside, but I found it eventually and I was still really weak from this is like may be, I don’t know two, three days after the amputation.

Catherine:No it was a big longer.

Bill:Was it a bit longer? I can’t remember the exact time. But I was still very weak. It took time to get your strength back, but I remember being so out of breath and so, but I felt elated when I got to where the buses drew into the hospital grounds. And I thought

Catherine:Bus to [place].

Bill:I could get on that bus. I decided against it. I may be naughty, but I’m not that naughty. I So I went back to the ward, but it taught me something, that, you know, you can get to places and you could rehabilitate and once you got rid of the infection and you get your strength back then perhaps, you know, it wasn’t the end of my life.

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Since his injury, Juri feels he has become more diplomatic and rarely gets angry.

Age at interview 27

Gender Male

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From every bad experience you have there is always something good that comes out of it.

Yeah.

Especially from bad experiences usually. Those are the ones that teach you. Yes.

What do you think the good things were that came out of this experience?

Now. I don’t know if it’s because of it, but most likely it’s because of that, I would rarely ever fight, especially for silly things, you know. Sometimes people get angry because we get pushed on the streets, or you know, because somebody says something to them, and that wouldn’t even be enough to get me into a fight any more. I rarely get angry now. I actually, almost despise anger.

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People resolved to recover from their injuries, and felt they owed it to themselves and their families to do so. Barrie’s mum died during his recovery, but he was glad she knew he was alive before she died. Recovering was described as a constant struggle that didn’t mean becoming free of the injury; Raymond described it as a ‘life sentence’.

Raymond says that life owes you nothing. He accepted his injury as a project he needed to work on.

Age at interview 44

Gender Male

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But from day one, I mean, I took the opinion that life owes you nothing, you know. Some people believe that life does, but it doesn’t, you know. You’re here by the grace of God. And I just accepted what had happened to me as being a project that I need to work on. I take it step-by-step, one day at a time and progress like that.

I’m a very driven individual, always have been throughout my education, my studies, and I everything I’ve done in life and that, thank God, never left me. I had some great laughs along the way, but you know just take it, took it one step at a time.

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Christopher doesn’t want to be labelled as having a brain injury. He wants to be seen as himself.

Age at interview 58

Gender Male

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Is there a part of you that wants to sort of separate brain injury from your life?

Yes. I don’t want to be that individual that’s got a brain injury. I want to be me. Part of the problem, if there is a problem about being me, is you are what you are from the way you’ve lived your life. And there are certain aspects of the way I lived my life, which are more difficult for a variety of different reasons. I certainly don’t want to work the hours I used to work. I think living in two locations might be a little bit of added complication. Having the range of age of children that we have is another interesting challenge. All of which requires adjustment. And I think I haven’t been very good at adjusting because I keep on thinking that I could go back to what I did before, but that had other things attached to it, which are more difficult to try and put in place. The person who has been probably the most flexible has been my wife. She’s seen the change in how I have behaved and yes, she would like me to be as I was before I had the accident and in many ways yes, I am, but not quite. And all those little fine points of difference are important and they’re part of life’s references for everyone.

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The problems caused by their injuries often left people feeling frustrated. As a man (Interview 23) who had a brain injury said, ‘Why have I got to stop alcohol for the rest of my life because of what happened to me? That’s why I get angry sometimes, and frustrated, and take it out on someone else’. People’s lives now often involved managing new challenges’ pain, seizures, memory problems, bladder, bowl and skin care. Life could take more effort, planning and thought than before.

Nick Z said that it would be easy to regress now that life is more difficult. He thinks it is…

Age at interview 49

Gender Male

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And life generally becomes a lot more effort, everything takes a lot more time and a lot more energy, things that you can do, and obviously there are a lot of things that you can’t do any more. So organising yourself and being clear in your own mind about how you want to spend the time and the energy that you have got I think is incredibly important because I think it would be very easy to vegetate and go backwards. So it’s very important to, as I say set your priorities and have goals and try and make sure that you do what you need to do. And try and make sure that you do what you need to do. And that you keep improving, you keep expanding your horizons and not, not allow your disability to define your life. Obviously it has a massive impact on your life, but if you can avoid your injury defining your life then I think you’ll do well. And certainly all the most inspirational people that I’ve met or who have heard about who have the same kind of injury that I have are the people who have not allowed their injury to define their, who they are, and their relationships and what they do. Very difficult.

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There was often some tension between thinking about the person they had been before the injury, and the person they had become. But they thought perhaps they were idealising their old selves or ‘looking at the past through rose coloured spectacles’ (Christopher) and should accept their changed lives. However, this was not an easy thing to do.

Jane feels her injury happened at a critical time in her life when people ordinarily would be…

Age at interview 34

Gender Female

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And from your own personal experience of brain injury, are there still things in your life that have been affected by your injury?

Yeah. Income. Career. I think I mentioned that I lost friends. But I’ve gained really good friends, so I think I’m grateful for knowing, especially I think the friends I made whilst I was unwell. People want to be your friend at your lowest then. They stick around through the good times too, but I can’t say the reverse works. So, yeah.

What else? I think my life isn’t probably as stable as what it could have been I think. Yeah, I think your early thirties are quite a crucial time in your career and quite…and probably in your personal life as well. But you’re meant to be kind of at your peak, you know, intellect and creativity and everything I think and to kind of, I do feel a bit sad sometimes that, so that’s okay that’s when, that’s when it happened when I was 30 and so, I think definitely I do still feel loss actually yeah. Yeah. I try to focus on the positive and I try to feel grateful that I’m in the UK in an amazing city and I get to do some of the things but it does sort of feel like plan B sometimes, not plan A.

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Some people said they ‘got used to’ (Kenneth) their injuries and the permanent changes they had brought to their lives. But they also had to get used to the fact that they had survived. As Bryan said, ‘I had to get used to the fact that I was able to live for the rest of my life’. Sometimes people felt that being injured had changed them for the better. Some talked about finding faith in God or having their faith strengthened. Others felt they now had different opportunities they wouldn’t have had otherwise, and that life was less stressful and simpler now. People said they became more positive and carefree, didn’t worry as much, were less easily angered and less concerned about putting plans in place for the future. As Wesley said, ‘If something’s going to happen to you, it happens’. But other people said they had become worried about things, especially safety.

About six months after injury, Bryan became depressed because he felt he should have made…

Age at interview 36

Gender Male

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And there was a weird thing that happened actually about six months later. I kind of sort of became depressed all over again. I thought because of something so revelatory having happened to me, I should have been able to make incredible changes to my life, and I should have been achieving a lot, and I should have been a much better person. Essentially I was probably being self-critical because I suddenly thought, why haven’t you done so much? Why has nothing changed? And it’s funny because I know of one person that I used to work with who had been through a really serious operation who actually said the same thing on a work night out one night, not realising that the person sitting next to her had experienced exactly the same thing. And, although I didn’t do it because I didn’t want to reveal what happened to me, I did almost feel like saying, I recognise this because I have been through the same thing, basicall. I don’t know you kind of think, okay, I should be able to do so much. I should be able to help so many people because of what’s happened to you. You kind of feel this desperate need sometimes to give something back or to, I don’t know, just to, just to have a real focus to your life.

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Nick Y and his son (Jamie) both had life-changing injuries. His way of making change was to take…

Age at interview 68

Gender Male

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You hear about these wonderful people who see things are awful and then go and do something about it, you know, run the London Marathon to raise money or whatever it might be. I never actually did anything. My way of doing something was to do as much as I could with Jamie. Not as any kind of hero because he has minders who look after him. But he would come over here for instance for the day. I’d take him out. We used to go down the coast. I took him to the cinema, the theatre, you know, out for a posh meal. I took him for a meal several times to the Dorchester, posh hotel in London, because it kind of boosts his confidence, makes him feel he’s part of the world.

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Jack said he would almost thank his assailant for causing his injury because life is so much…

Gender Male

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And the person who caused your injury was prosecuted?

Yes he was prosecuted, got a two year sentence, served one year and then he was deported. He was an illegal immigrant. I wasn’t too bothered that he got a short sentence; it didn’t really bother me. What sentence could have made up for a lost limb? There wasn’t a sentence, so that didn’t bother me at all. My policeman brought photos and stuff, but I didn’t want to look at him, I didn’t want to know what he looked like, it was something I was quite keen on not seeing his face.

Why is that?

I did not want to have the guy who’d done this to me etched in my head for the rest of my life, I didn’t want that. But I was thinking about it the other day, if I was to meet him I don’t think I’d get angry at him because I think it’s had such a positive effect on my life this accident, I don’t think I could get angry at him, I really couldn’t. I’d be tempted to thank him if I’m honest with you. I’m not saying that; I genuinely mean that. It’s had such a good impact on my life.

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Nick Y worried about the way children are taught road safety by their parents.

Age at interview 68

Gender Male

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I feel quite strongly about this. When the river, I cycle along the river tow path and a lot of parents are with their children on cycles, you know, cycling along a busy tow path. And I’ve noticed often the kids on their bikes with their parents will go to their right as they are coming towards me, which is suicide if you’re doing that on a road. I really am nervous that children are not learning to keep left on roads. Anyway, so as an old git, whenever I’m cycling on the river path and I see a child – particularly a child; I don’t say this to grownups – if I see a child coming towards me on their right, i.e. coming headlong towards me. I say, Go to the left And I often then find parents staring at me you know, being rude to their child.

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Being injured caused people to examine their lives and reconsider their priorities. Sometimes their views on the importance of their careers changed and they decided they wanted to have a better work-life balance. As Ed said, ‘I’m going to have a more balanced life: home, work, community’. Having a life-changing injury often motivated people to give something back and try and improve other people’s lives. They became involved in charities, raising money or supporting other people who had been injured. Some did this on a small scale and others said they did not do it at all.

By raising money for charity, Ed feels he is turning a bad situation into something positive.

Age at interview 42

Gender Male

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And that’s just another way, in which I’m just trying to just turn a bad situation into something that is more positive. I mean last year, I, I went, I did a charity cycle ride, for, mainly for selfish reasons, because I wanted to do, I wanted to cycle to Paris. I fancied doing it. I wanted to heave my bulk on my bicycle to Paris and I did it. It was great. And I did it for the Anaphylaxis Campaign, because my son has anaphylaxis to dairy, eggs and some other food stuffs as well. It was fantastic. I felt really good about it. And partially selfish reasons, but partially I’d helped a small charity, right, that tries to make its own little sort of difference as well.

Next time I will invariably do other sort of sponsored whatever it might be. And the next charity I probably have a go will, will end up being Headway. But the way I see it now, is I’ve got three charities that I have a personal interest in’ Anaphylaxis Campaign, Headway, and also [retreat location] as well. Because all these things have helped me, or helped those around me in one way or another. And I think it’s important that you start giving a little bit back. And that brings us back to the thing about London.

Because everything in this sort great and large city of ours, everything is done so frenetically, so quickly, so selfishly because people don’t have time to look out of, look outside of their own little sort of narrow sphere. And bring a little bit more humanity to everything. You give it out, you receive it back.

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Jane said she was very career-orientated before her injury, but now she would be happy with a…

Age at interview 34

Gender Female

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I would like it not to be, but as a single person with no children, it kind of becomes like actually, I don’t even have a career to throw myself into any more. So I think I’d like it not to be the most important thing, but it’s kind of, there is a gap in my life that I don’t have that fulfilment as well. I think at the moment. So, yeah, I wouldn’t, I wouldn’t say that I’m as career driven. I’d probably be very happy just to be in something meaningful and earning enough to live on comfortably. You know, and I’d be absolutely fine now. In fact, I probably would prefer to have a bit more spare time, but I’m adjusting to, especially being back in London, that I don’t have that. I mean in some ways since I’ve been in London, I don’t have to drive to work and I can and the working hours are a little bit less in some careers here in the UK than a 35-hour week versus 40-plus at home. So I’m not, I have probably made a deliberate decision to be here and know that I don’t have to be working 50, 60-hour weeks necessarily, because we are quite hardworking in New Zealand, so yeah. So there are some things that are better but.

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Body image and disability

After life-changing injuries, people sometimes looked different than before and their bodies didn't always function in the way they used to. They often experienced anxiety,...