Life-changing injuries
Recovering and establishing a new identity after injury or acquired disability
The many changes people we talked with experienced after injury often led to them feeling like their identity changed. Sam said, “Your identity’s been dismantled. You have to work out who you are again and feel confident in being like that”. This could be distressing for people. Brian said he felt upset because “the person you were before is gone, they’ll always be gone”. This was also difficult for the people around them to accept.
After his injury, Adrian explained to a friend that he wasn’t the same person as before. He told...
After his injury, Adrian explained to a friend that he wasn’t the same person as before. He told...
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Yes, I’ve got a good example of this. For example about two years ago, my friend said to me, again I’ve known him more, I’ve known him 36 years of my life from the age of 6. He lives in [place]. He said to me, “Come on over, the guys are having a get together you know, at the pub. You can stay the night at mine on Saturday evening”. I said to him, I checked my memory aid and said, “Ok, that’s great, [friend’s name], but I’m going out Friday night. I know my stamina-wise I won’t be quite up for it because I’m having a heavy night Friday, do you mind if I give it a miss?” He said to me, “The old Adrian wouldn’t have done that.” I said, “The old Adrian died.” I felt bad saying that to him, but I had to say to him, “Look, I’m not the same person anymore.” He knows me but he doesn’t know me. Even though he’s known me from the age of 6, I can’t … I might want to do that, but I know I can’t do that. I’m aware, I can see, it’s not that I can’t do it. I just don’t know if I can do it or not. I don’t want to say to him, yeah, I’ll be there and then not be there. I want to be reliable. I don’t want to be, “oh I’ll do my best”. I’m either there or not.
I said to him, I said to him like, “I can’t be there. I think I’ll be tired.” “Oh the old Adrian wouldn’t have said that.” The old Adrian’s dead. I’m not the same person. I might look the same person, but I know... I felt bad saying it to him, but I had to make sure he was aware that I’m not the same person any more. I’m not. I have the will of the old Adrian, knowing I want to do that. But I don’t know I can do it, which is more like why there’s uncertainty, which is why I don’t want to confirm either way I’d rather not say it.
For some, an important part of recovering involved accepting and coming to terms with their changed selves and finding ways of managing the challenges they faced. Christopher said he didn’t want to be “that individual that’s got a brain injury. I want to be me.” Elcena said it was “a different kettle of fish” becoming disabled as an adult, rather than being born disabled, while Brian described the experience as weird. People thought perhaps they were idealising the person they were before (Amy) or “looking at the past through rose coloured spectacles” (Christopher).
People’s identities were also changed by the things they were no longer able to do, like going back to work or helping out around the house. Bill said after injury he felt life “wasn’t your own, even at home”. He stopped carrying money and keys after his injury because everything was being done for him, and he felt he didn’t need to.
People were determined to recover as best they could. This “grit and determination” (Jack) was something they felt they always had, but didn’t know its full extent until they were challenged by injury. Setting realistic goals and targets, repeatedly practicing things, forcing yourself to do things you find difficult, persevering and maintaining hope were important for people during recovery.
Dave feels that his life is normal now, it’s just a question of adjusting to his limitations.
Dave feels that his life is normal now, it’s just a question of adjusting to his limitations.
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I guess my life now is normal as I see it. You quickly adapt to a new situation and certainly over time as the years go by it becomes normal. And the fact that, you know, you use a catheter is just normal and the fact that I use a wheelchair is normal. I get up and, you know, the wheelchair is my way of getting about and I’ll go off to various meetings and, and work and, you know, come back at the end of the day and sit on the sofa and have a shower like anyone else. It’s just I guess different ways of doing, doing things. And I think certainly it’s difficult to get used to having to have help on, on certain things, having someone around. That has impact not only on me but, you know, your close family. Having somebody around to help do things slightly alters, you know, your domestic set-up. And, you know, there are frustrations with, you know, not being able to partake in the sports or certain things that I used to do before. But there are, you know, new options of things to do and ways to exercise. And, you know, going on holiday becomes more difficult, but you just have to check that where you’re going has suitable access. And provided you’re fairly adaptable and, and healthy you can, you know, get round most things. So, yes, it’s difficult and there are frustrations along the way. But you realise that there are, many people have different limitations in different ways and there are always going to be limitations, and unfortunately some of mine are more severe than, than most people. But you end up in a situation where your life is what your life is. And you know what you’re doing and, you know, you settle back into a routine. And that’s, you know, how things develop.
Ed went on a retreat after his injury. He found meditating, and improving his fitness and diet...
Ed went on a retreat after his injury. He found meditating, and improving his fitness and diet...
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And so to build on all this sort of stuff we’re looking at doing quite a lot complementary, activities as well. One of the, you know, we’re trying to hit this thing from numerous angles' you know, physically getting into a far better shape than I was before, even though I was physically pretty fit earlier, I was still carrying around far too much weight. We’re getting on top of that. That’s moving the right way. We’re improving the, I’m improving the diet that I’m on. I do an awful lot of the cooking around the house because I’m the one with the time, and I also make sure that I make soup, because I like, I’m now decide to make it, sort of the way I’m going to eat going forward, is in the evening that’s all I’m going to have is soup. So, two square meals a day, plus soup, which is working fine.
And as well as that, is generally just trying to be a little bit sort of more focussed and kinder to myself and this is where this, this retreat that I mentioned earlier has sort of come into it. I’ve just come back from a five-day silent meditation retreat at [retreat location] in [place]. Many people were staggered that I was going on it. Because it’s, personality wise it’s just something that I would never do. But I went on it. It took a couple of days to actually get into it and, finally, on day three I realised that I could sit there, yeah, it might only be for five minutes, at a time, and then a little look around and then do another five minutes. But I could sit there, feel that my arms, shoulders, generally my body became extremely relaxed. Things floated into my head. They floated out. It didn’t really matter and that was, ah that’s a way of meditating. That’s fine, it was starting to work.
Some people felt they had recovered and were back to being who they were before injury. Returning to doing the things they did before injury was a marker of recovery. Barrie got back to singing, which has always been a big part of his life. Others were still trying to recover, even those whose injuries had happened more than ten years ago. Some felt they were unlikely to get any better or regain any skills that had not returned at this stage. But others were more positive. Adrian said he was still finding out new things about himself and new ways in which to manage the effects of his injuries eleven years on.
People spent various amounts of time recovering from the physical, mental and emotional effects of the life-changing injuries they sustained and the treatments they received for them. Recovery was often described as a frustrating process and Nick Z said that things usually got worse before they got better. People often compared themselves to others who had also sustained similar life-changing injuries. Amy felt this was unhelpful, but some people found this useful. Knowing others more severely affected by their injuries made Adrian feel grateful because he wasn’t as badly affected as they were.
Simon A had short-term memory problems after brain injury. He read and re-read ‘The Diving Bell...
Simon A had short-term memory problems after brain injury. He read and re-read ‘The Diving Bell...
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I used to do a lot of reading in those days, even though I was finding it very difficult to retain the stories, because of my memory problems. I couldn’t watch a film for instance. It was so frustrating, because I couldn’t follow the story. My memory was so impaired. But there was one short book in that year. I think it was the Booker prize winner of that year in 1997. It was the editor of, of the French women’s magazine, Elle. Jean-Dominique Bauby, who himself, he suffered a head injury. I think he had a stroke and he suffered from locked in syndrome. He wasn’t able to communicate in any way, other than by his physiotherapist. He managed to learn by blinking his left eyelid. He used to dictate 40 pages of a book called the Diving Bell and the Butterfly and that book I managed to retain. I read that avidly and I retained what he was going on about. And that motivated me quite a lot. And I thought, if this man, who was suffering such adversity, it made me think, what am I feeling sorry for, and I used that technique as a strategy within work situations after that.
So I’ve always tried to, whenever I’m come across different stages of adversity, throughout this journey of rehab I’ve had, I’ve tried to find the positive in each of those instances and turn it round.
Sometimes people’s prognosis immediately after injury was “gloomy” (Simon A) and their injuries so severe their families were warned they might die. Health and social care professionals, like physiotherapists, occupational therapists and psychologists, were instrumental in helping people’s recovery.
After his elective amputation Ambrose was put on a fixed care pathway, which meant he had a...
After his elective amputation Ambrose was put on a fixed care pathway, which meant he had a...
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And as it’s turned out it was the most appropriate thing to be done, because as I said nine weeks afterwards you know, back at home, perfectly fine, can put the new leg on, go out for a walk with the crutches. It’s healing well, you know, and everybody is very pleased with the progress, because as I said earlier, of having this very fixed care pathway – you do that, and you do that, then you do that. I wasn’t, you know, I was expecting to take a bit longer knowing older, lots of surgery that potentially would take a bit longer, but as it’s turned out I’ve actually sort of stayed on the milestones of the care pathway, you know, of out in the chair that day, first physio that day, first leg casting at three weeks, wearing it at four weeks, checked. And so I’ve actually gone along very well, and as I said last week when I saw the consultants, you know, they gathered everybody together again to actually look at it, what it looked like afterwards and they were saying, “Well yes, that was the right decision” because, you know, I’m taking now a quarter of the painkillers that I was and most of those are actually on reducing doses, you know, a planned reduction down to the aim of being back for, you know, paracetamol now and then for the leg obviously the rest of my body’s aches and pains aren’t relevant, but, you know, specifically for that it’s going really, really well.
Further treatments or operations after injury sometimes gave people hope. Bryan felt his recovery from his two brain injuries and hearing loss started when he was offered an operation to improve his hearing.
Part of Daniel’s skull was removed after brain injury. A dip in his head was later covered with a...
Part of Daniel’s skull was removed after brain injury. A dip in his head was later covered with a...
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I just get on with it now. Before, like before the actual plate was put, when I was like able to go to the shops and stuff like that with the dip, it was like everyone kept looking and stuff like that. And I didn’t care at all. But now I feel like, oh imagine if I’d still had it and stuff like that, and now it’s just, well get on with it. I’ve got a scar on my head, you know, what I mean?
So before you had the plate put in the bone had been removed and hadn’t been replaced, so you could very definitely see?
Oh yeah, everyone kept looking. At the time I wasn’t at all fussed. I couldn’t care less about what people were looking at. I would start laughing at them rather than like being like angry or stuff like that. Because I was saying, I just kept thinking, yeah, I’m getting, in a month I’m getting a new one. So do you know what I mean? I just thought, forget it. Getting a new one, so you lot can laugh or stare at the moment, but when I’m back to normal I’ll have a nice, not nice but I’ll have a scar there. So it’s people now that they probably do think, oh look at that guy with the scar, but again, again it doesn’t bother me at all. You know, literally at all. I couldn’t care less, what people will think. Because obviously people think and look and stuff like that, but to me it’s not a problem at all, especially after what I’ve been through. Again I couldn’t care less. But just be happy like.
Families also played a significant role in recovery. Raymond said he was motivated to do his best to recover for his “loved ones”. Marina said what her son Daniel had to do seemed daunting at first, but he made a remarkable recovery. Some people felt isolated and didn’t seem to have the support they needed from their family. Jane felt that her family didn’t understand her brain injury because her father previously had a more severe brain injury.
Life after injury usually involves quite a lot of uncertainty. People didn’t know how long it would take to recover, what they could recover or if they would recover at all. Health and social care staff usually couldn’t accurately predict this for people. Staff sometimes estimated the length of people’s recovery, which varied from a few months to several years. Kenneth was told he might struggle for years, which he found a “scary” prospect.
It took about 10 years for Simon A to feel he had recovered, but he thinks this is a short time...
It took about 10 years for Simon A to feel he had recovered, but he thinks this is a short time...
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Whereas after the brain injury I feel that I became, my personality changed a little at times. I became more, much more gregarious and I think it’s come back to how I was before now, you know, fourteen years afterwards. I’ve read that many people suffering from a brain, like for instance my wife’s father who fell off his push bike in Ireland, he sustained a head injury and he changed, his personality changed completely. He changed from someone like me who was really reserved and quiet. He became the most, the life and soul of the party. He’s now, he is completely different. All because he hit his head on the pavement. And apparently this happens quite a lot with brain injury.
But you feel that you’ve got your personality back…?
Gone back to how I was before, yeah.
Yeah. And how long do you think it took for you to get back to who you were?
Ten years, which is a very short time in the context of head injury. What you need to understand is that head injury is a life time, it’s a life sentence, if you’d want to treat it as a problem, or it is, it’s a life journey that you need to negotiate. It’s the most important you really need to understand. Its, if this happens to you early on, like when it happened to me I was 30. And if I live for another say I live, what’s the average? Around 80. That’s a fifty year journey you’ve got. So ten years is nothing really.
Ed’s friend also had a serious injury and advised him recovery would take at least six months,...
Ed’s friend also had a serious injury and advised him recovery would take at least six months,...
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The information that you got about your brain injury where did it come from and what was kind of thing you were being told?
Well, initially stuff was coming off the Headway website. And then the consultations with neurologists and it was that sort of level of information. And the thing about it is that it’s all fairly, it’s fairly sort of wishy-washy. You can’t put a time scale on it. As well as that, I spoke to a very good friend of mine, his now wife had had a very serious horse riding accident and basically she turned round and said, “Listen, I had to stop, I had to take six months out. Take six months. Don’t take out the corners. Take six months. There you go. Period.” I went, “Right okay”.
And it was actually, it was very similar, because it was, I remember many years ago, I was chatting to actually her husband, my friend and we were talking about sort of house purchases and house sales and he turned round and said, “Whatever happens it takes three months by the time that people have, you’ve engaged the estate agent, people have been round to look, offers have come in, then the conveyancing starts, the mortgage applications etc., etc., etc.. for exchange and then completion it always takes three months. Guess what? It always takes three months. Head injuries, well, his wife turned round and said, “It always takes six months.” I’m pretty sure it does actually. I’ve read up on James Cracknell’s website and his antics, especially since he was clobbered off his bike in the middle of the USA by that truck. And yeah, six months again, and then additional healing on the back of that. And, so, you know, I take from that.
Even though people usually wanted to get better and get their lives “back to normal” (Wesley) as quickly as possible, some were never going to completely recover because the effects of their injury were permanent. So having a long period in which to come to terms with injuries and changed life was seen by some as a positive thing.
Simon B thinks emotionally adjusting to injury takes a long time, so a prolonged period of...
Simon B thinks emotionally adjusting to injury takes a long time, so a prolonged period of...
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Yeah, I mean from what I’ve experienced in the 17 years since my injury is such that I think, the disability is one thing, but it’s all about psychology and I think if you’re surgically fixed and then a week or two later there’s a wheelchair by your bed. I think that’s quite a leap psychologically to go from being very active to being suddenly having a chair thrust upon you. I think after two months you’re kind of grateful there is a chair, because you just want to get out of bed, and so for me, it seemed to be, it seemed to work. It seemed to help that psychological process.
And also the fact that that factored into a very slow rehab in terms of 51 weeks these days that would be 30 weeks, if that. So I think it gave me enough time to provide the building blocks to the rest of my life by having a lot of education, lots of time to think, talk, share time with other people that were going through it as well. So I think that slow approach has seen me to the extent this day. I think if I tried to rehab in three months I would be then being chucked out into the community. That might be a very different thing entirely as to how well I might have done.
People said initially they progressed rapidly in their recovery and then it slowed down or reached a plateau. John said things fall into place slowly and Dave said that every little achievement was welcomed along the way. When they were feeling frustrated, it was important for people to remind themselves of how far they’d come.
Immediately after injury, some people realised the “monumental task” (Jack) that was ahead of them. But after brain injury, people can lack awareness and insight, which means they may not understand the extent of the effects of their injury. Even when they gained insight and realised what had happened them, people were still sometimes reluctant to accept their impairments.
When Raymond became aware of how his brain injury was affecting him, he said he struggled to...
When Raymond became aware of how his brain injury was affecting him, he said he struggled to...
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And I told you earlier as well, you know, like I’ve been through years, many, many years, of soul searching. Trying to understand why I couldn’t do things. Why I was having difficulty with other areas. Until I developed different strategies to see how I could address different projects at work.
At the start you said that you realised that you were a different Raymond to the Raymond before?
Yes.
How were you different?
Well… I often talk about this as being the biggest death in a brain injury; it’s the death of the person themselves… I used to be very, very confident, you know, almost – this’s where my word finding comes back to haunt me again – almost arrogant, right? And, you know, that had its positives in the fact that I can do anything, I could do whatever I wanted to do. And even if I didn’t know how to do it, I could at least brag it, you know, blag it whatever it’s called, you know. But when I came round from the coma, I realised just how difficult it was for me to speak. My self-confidence took a huge hit because I could no longer speak at the speed at which I thought, which was the person, the way I was before.
Was there a particular sort of moment of realisation? Was there anything that made, one instance in time where you thought actually I am different and I hadn’t realised it before?
You know, as a sane person, right, as you are Anne-Marie, right, as a normal person right. That’s the kind of rationale you would have in your head. Unfortunately, I’ve been living with this now since ’98. How long ago is that now? 13 years, yes, 13 years. And over those years it’s been a gradual kind of emasculation for me in terms of realising certain things. So it’s been over a long period of time. It’s not as though you wake up some mornings thinking...It’s different, you know, it must be different, you know. It’s because of the constant bombardment of ideas in your head. The realisation that you can’t do certain things. You can do other things. You’re good in certain areas, you’re not so good in other areas. That you realise there’s a, you’re a different person.
(See also ‘Body image and disability’)
Last reviewed October 2015.
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