Life-changing injuries
Challenges and strategies after injury or acquired disability
Life after injury often involves a continuous process of facing new challenges. Depending on the type of injury, these may include memory loss, concentration problems, difficulty processing information, physical problems, and problems with sight and hearing. People we interviewed adopted a range of strategies to help them manage these challenges, and Simon A said this was “the key to life after injury”. While people hoped these strategies might be useful for others too, it was recognised that everyone is different and needs to find what works for them. Finding the best strategy involved a lot of trial and error, according to Adrian. In spite of having strategies in place, people still had difficulties. Jane said, “Bad days dash my confidence”.
Hospital rehabilitation staff were a common source of advice on strategies to manage physical challenges, and problems with memory and concentration. Initially, coming to terms with the lasting effects of injuries could be difficult. Christopher remembers feeling upset when the occupational therapist first suggested developing strategies. “This was just like the pits. Because anybody who needs a strategy explained to them to live, there’s something seriously wrong with them.” Jack used humour as a way to help him and his family come to terms with his limb loss, while Sam found creative activities helped.
Sam used activities in which he could express himself to come to terms with being in hospital. He...
Sam used activities in which he could express himself to come to terms with being in hospital. He...
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I mean one thing that springs to mind – a useful way of – I found very useful way of coping with the hospital time – because you know, if you a serious accident there will be a lot of hospital time – was to try and do something expressive. To write something. To draw if you’re better at that. I found a side where I wrote a little bit of poetry. It’s not about try to write something beautiful. It’s about trying to express what you mean when you can’t express it in just straight language, because sometimes you use imagery and metaphor and allusion, and you know, it’s like you can say what you want to say more accurately, without when you don’t try and be literal, you don’t try and be accurate. I found that quite a useful thing.
And you just start that off, just by writing a diary for what you’re thinking about, I found that very helpful. I’ve still got it. I still look at it. And it’s got drawings in there and piles of stuff. And that was, I think that was a helpful thing and I recommend doing that to other people who have been in difficult situations. But apart from that I think we’ve covered most stuff.
What’s it like looking back on that diary now?
It’s good, you know. I look back and I think, you know, I was really. I was proud of this like this sort of, how I felt. Because you know, when something really bad like that happens to you, it makes you empathetic and reasonable in a way when you’re kind of by yourself. It can make you really impatient when you’re around people, but you really have to think about the nature of like what’s happening to you and how it’s affecting other people and you’re reflecting on stuff a lot. So you know, I look back on it, and I sort of stand by and think that’s there. And you know, that’s kind of, you know, its raw stuff which is important to get out so yes. It’s a good thing to do. How do I feel? I feel good about that when I look back on it.
Accepting that life has changed was an important factor for some in recovery and facing up to challenges. A man (Interview 23) with a brain injury said he almost wished his rehabilitation professionals would tell him he was not going to recover any further because he felt frustrated by trying to improve and live with his impairments. Having a realistic understanding of their limitations could be valuable but difficult to establish, because sometimes people had problems with understanding, especially after injury. Accepting they were not the same as before, letting go of their old self and not dwelling on the past were seen as helpful. People felt it was important to try to remain positive and not to let the new challenges they faced define their lives and who they were. Interview 23 felt it was important to find things to do and “start getting their life back into order” rather than sitting at home. At the same time, Nick Y cautioned against overdoing things.
Returning to employment was not an option for everyone, but those who were able to go back to work discussed ways of making it manageable. This included going to the office at times which suit you, flexible or part-time hours, or working from home.
Planning and organisation became particularly important after injury, and people were often encouraged by rehabilitation professionals to set themselves goals and to think about and plan the tasks they needed to undertake. One man (Interview 23) who had a brain injury said, “Start doing goals and little tasks and it just helps you get your life back into order”. Careful planning and organisation were often important to people after injury because many were unable to do things spontaneously anymore. Simon B said his body no longer “worked on autopilot” after his spinal injury so he needed to plan in advance.
Simon B said it is important to be organised. He keeps a couple of rucksacks packed with the...
Simon B said it is important to be organised. He keeps a couple of rucksacks packed with the...
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Less so. I wouldn’t say I don’t think about it at all and I would say that I think about it all the time. I’m somewhere in the middle in that I now always have my home environment in such a way that I have, you know, a rucksack by the front door, full of my stuff. I have an overnight bag permanently in the boot of my car. I have all my kitchen laid out a certain way. So, kind of on a functional, you know, organisational level, stuff is just in its place. And then also personally I’m organised in a certain way. So, you know, regular bowels and drink certain amounts and eat certain foods and, so you kind of chip away all those things, and you do them also on auto pilot. So, less so. I think I found a reasonable balance in the circumstance that I can live fairly spontaneously, because one thing you do lose with disability is you lose that spontaneity of just going right I’ll just nip out now, rather than having to think ah I’ve got to do that, I’ve got to do that and I’ve got to do that. If you’re more organised up front you have to think about that less.
So for instance, in my rucksack that I carry with me every day, there’s enough stuff in that rucksack that if a mate says, “Oh crash over tonight. Kip on the sofa.” I can do it. Because I know that everything I need is in there. I don’t have to think about it or say, “Oh no, I can’t do that because I’ve not go this bit or that bit.” So, there’ll always be a toothbrush and a spare leg bag and just stuff in there so I don’t have to think about being disabled. I can say, “Yeah, of course I’ll crash over.” Or I have an overnight bag probably in the boot of the car in case I come home one night and the lift’s broken, so I can go and stay in a hotel down the road, or ring a mate and crash on his sofa. So you do get disciplined. Unfortunately, you do all that stuff by making all the mistakes. They all come at the expense of things going spectacularly wrong. So you only get that through experience. It’s not that I’m particularly wise before the event, it’s just that I’ve learnt after it. So it’s a struggle to get the spontaneity back. But if you do you can be much more content if you do.
But yes, an able-bodied person’s body does run on autopilot. It’s just so easy being able-bodied, compared to disabled. Because I’ve been both and that puts me in unique position that I have been both, so I know what both means. And it’s far easier. But that’s not to say that with a disability you can’t adjust and get organised. But you do have to be very disciplined and that’s something that does take time.
Extreme tiredness (or fatigue) is a common problem after injury. It is often a direct effect of the injury, but is also associated with the effort of dealing with daily challenges. People dealt with this by taking naps during the day, for example, and scheduling activities for when they would be well rested. But Adrian said he found keeping his mind active was also a good way not to get tired. Some also believed that other changes, such as cutting out sugar and caffeine improved their energy.
Although brain injury was frequently described as a “hidden injury” (Barrie), people also sometimes experienced lasting physical problems, especially with fine motor skills.
Wesley has problems using his left arm. He has adapted by using his right arm, but this isn’t...
Wesley has problems using his left arm. He has adapted by using his right arm, but this isn’t...
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Yes. I’ve also learnt to compensate. I’m right handed. Now I do most things with my left hand and my left arm. Just because I’ve had to compensate, like shave, I tried having a few wet shaves with the right hand, and looked like Edward Scissorhands, with all cuts over my face, so I had to compensate shaving with the left hand because I looked like in the film Edward Scissorhands and he’s got all cuts. That looked like me with about seven cuts over my face, because I tried to, I do prefer wet shaving, but I can’t do it because I just cut myself and I have to drink left handed and I think, the only thing I find difficult now, because of all of that, is I can’t write with the left hand, because that’s all, that just looks weird. But it does, have you ever seen a left-handed person write? And they’re like that, and it just looks weird.
Okay.
So I’m quite glad on that basis that I’m not left handed.
So the other thing was there that each time, if you stand up to write it’s better.
It is because I lean down onto … If I lean down to write, and I push hard I’m not actually using the elbow so much because everything’s pushed down, which when I have to sign hundreds and hundreds of things at work, I always try and make sure I sign my name first or last, or people are just going to be there half an hour just for my signature, and it’s well, you know, and I take up everyone’s name, so I tend to make sure I’m either one of the first or last. Because of the right arm nerve damage.
It was common for people to experience problems with memory, planning, concentration and sensory overload after brain injury. Sensory overload is when people’s senses get overwhelmed by what’s going on around them, such as loud sounds, movements or lights. Ed was surprised to find a relatively simple solution to it that worked for him.
Ed was surprised that something as simple as earplugs helped him overcome the frustration he felt...
Ed was surprised that something as simple as earplugs helped him overcome the frustration he felt...
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But on the way down to Cornwall, four hours into a six hour drive, I literally went a bit mad. I had a massive breakdown, you know, asking everyone to sort of be quiet, hitting myself, hitting my head with my hands, crying etc., etc. I couldn’t cope with a little bit of noise in confined space for periods of time. And it actually took me a couple of days to recover from that trip down, and it was as a result of that experience that I decided that actually, I need to have a mechanism to take myself out of it a bit. Ear plugs are the easiest thing I can do, pop into any old chemist, buy some. And it actually has made quite a significant difference in order to do that. It made quite a difference on the holiday and it’s made a difference since.
One of the things that we did, on the way, when it came time to return from Cornwall, was, I got put on the train at St Austell, my wife and son drove. And they met up with, with my wife’s cousin. They had a little play on the way, etc., etc. and I got the train back, which was actually, because there was a lot more space, and I had the ear plugs in, even though it was a fairly full train, it was an awful lot easier to cope with.
Sometimes people found decision-making difficult and needed time to think things through. Multitasking and solving problems were challenging, so people described approaching problems as if they were mini-projects and broke them down into smaller parts to deal with.
Raymond breaks problems down into small manageable parts.
Raymond breaks problems down into small manageable parts.
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I mean do you feel you’ve recovered from your brain injury now?
No.
No.
A very good point. Not at all. In fact my brain injury is now chronic. Okay. By that I mean that is... oh what do I mean? I’m not going to recover; I’m not going to improve any further. I’m not going to improve any further. We’re now at a stage where I know what I need to do every day, right. What I do is if, for example, my wife asked me to order some goods, right? And I ordered them and they came to work, right. For example, we got a big box for Christmas for our daughter. I then had to work on how I was going to bring that home. Right? So it’s like the strategy I have is to treat every separate, every separate issue I have as a little mini project, and almost like address out those, you know, like I would with any project at work. So that involves, you know, seeing how I was going to get the box from the “goods in” area to my car. How I was going to get my car home. What I would do to get the box in home. Whether I would park in the normal spot or park across the road here and park the car in the normal space right.
I know these to you and most people are just nothing, right, you wouldn’t even think about them. But to me they are a hugely complex thing right? Very challenging and requires an awful of thought and a lot of energy to try and make sure I deliver on what I committed to do to my wife to bring that home for our daughter. Right?
People described struggling to retrieve information from their memories. Amy said it was as if someone had muddled up a filing cabinet or divided their brain into compartments. Some felt doing puzzles and brain training exercises helped to improve their memories, but Christopher disagreed and said these were not helpful for him. Using transparent coloured overlays when reading helped some people process words, and earplugs allowed them to cope with noise.
Amy used software to convert written information into audio format. She felt that walking around...
Amy used software to convert written information into audio format. She felt that walking around...
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For reading the disability assessor had me work with a programme and my reading was very, very slow in the beginning and now it's very fast. But the difference that was they had me work with a coloured overlays and now I colour the screen on my computer and it made a huge difference because it retrained my visual processing and so if I read with the colour the comprehension was better, the understanding was better. There's not a lot of good research on it but it made a huge difference for me and I'm sold for compensation. I can read more quickly. What I did a lot in the beginning is I not only read, it's important to use all your senses because each of, each of your sensory aspects has its own memory so if you can engage a certain smell with what you're doing. If you can hear it so I would put my papers and my text books on pdf, then I would send them over to an internet programme called Spoken Word and then a mechanical e-person reads your texts back to you and I would play that while I was walking because also when you're walking and engaging your motor cortex there's also links to areas of reading. So I would walk and I would listen and then I would read again and that would make the material more deeply processed and ingrained in my memory cells. That was one way of, a couple of ways I guess of compensating.
Meeting new people could also be stressful and people worried they would forget names. They used techniques like associating the person’s name with another word or famous person, and asked them for their card or to write their name down. Amy said you shouldn’t be afraid to ask people for reminders.
Bridget explains the strategies she uses to remember the names of people she meets and routes she...
Bridget explains the strategies she uses to remember the names of people she meets and routes she...
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I did see somebody at one stage who told me various things, which I’ve never forgotten, like if you want to remember a person’s name link it to something that means something to you. So you meet Alice and she goes with Alice in Wonderland, you know, it’s that sort of thing. And it’s hard work, you can’t do it all the time, but on occasions when I want to, I can do that. And I’ve never forgotten that, so yeah, I mean there are, there have been memory... And the spatial orientation thing, you know, forgetting the way, the way to go to places. I know the way to do it because I was taught it, is, you know, you’ve got to make sure if you going on a route, you know, is there a Lloyds, you know, do you turn right at the Lloyds bank? Do you, you know, pass the Sainsbury’s? All that sort of thing, the physical practical things. I was taught all that as well.
People needed to be able to remember things they had already done as well as things they planned to do in the future. Having something they could use to help them recall things that had happened was reassuring for people with memory loss, so they often wrote things down on white boards or in notebooks or diaries. In addition to appointments, they also logged the formal and informal happenings, conversations and meetings they had throughout the day. Having a factual account allowed them to refresh their memories before they met again and they could rely on it if there were any queries about who said what. But writing things down wasn’t always a good solution for everyone.
Adrian makes notes about everything that happened during the day so that he always has a way of...
Adrian makes notes about everything that happened during the day so that he always has a way of...
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If you call me and I answered the call and we talked and discussed it, I’d have to make a note of that phone call afterwards in my memory aid because I can’t say I’d forget it. I can’t say I’d recall it. I don’t know. So make sure I could retain information I make notes straight away and when you say make notes straight away because I’ve got short term memory impairment, if you ask me to make notes in a minute’s time? That memory may or may not be gone. I don’t know for sure. I somehow know I can’t guarantee the information I’m writing down is right, which is why with an email I can see what was said and when, and what I replied. So that’s why it’s always good to have that, I can see what was said and when to be able to look back to be able to look back on it and say okay no I know what I said and why I said that. It’s recordable, yes.
Mobile/smart phones (e.g. iPhones) and tablet computers were often used as memory aids. This kind of technology has made a significant difference to people’s lives, but Christopher pointed out that for people with memory problems, it is important to develop a system for remembering the passwords you may need for different digital devices.
People used phones to make notes, which they could email to themselves, set alarms to remind them to do things, take photos of people and places, and put appointments in their diaries. GPS (an electronic navigation system) on phones was used to help people navigate through areas if they forgot where they were, and people also took photographs to remind them where they parked their cars.
Raymond has found his iPhone very useful because of the variety of ways in which he can use it to...
Raymond has found his iPhone very useful because of the variety of ways in which he can use it to...
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Now one area that I found very useful is the iPhone, the technology in the iPhone, because it’s got a diary function where you can make notes to yourself like in agendas and also like what you’re heading for in the next week or two. And meetings like, I’ve had this one in my diary for about three weeks now, and that way I’ve always been able to tell, you know, what’s coming in the week ahead of me, you know.
And I’ve also be able to prepare for it, unlike the last time, because I didn’t know what was happening the last time. I know to what to expect these days, you know.
So, I use the diary function a lot every day. I also use the notes function as well, making notes to myself. And I just realised that I can email those notes to myself to my work address, so when I get into work in the morning, I’ve notes I can recollect from the night previously before. And that triggers a whole train of thought about how to address certain issues.
Instead of using technological devices, some people noted landmarks, such as shops, and practiced routes, trying to commit them to memory. Those who had problems with visual perception (e.g. failing to ‘see’ things) and spatial awareness (e.g. estimating distance) had to take extra care to negotiate traffic.
Smart phones, GPS and landmarks were also important to blind people in learning routes. Additionally, people with visual impairments described a range of aids they can use to make help them live independently. Audible software makes using the computer and reading documents easier and bump-ons (raised, tactile stickers) can be stuck onto gadgets (e.g. microwaves) to indicate settings.
Rob describes the range of aids he uses to help him manage at home and when he goes out.
Rob describes the range of aids he uses to help him manage at home and when he goes out.
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Just careful, they teach me to be careful when I’m cooking. Teach me different techniques and like basically different...It’s little things like if you buy a microwave, buy a microwave, like if you’re not going to get a talking one, which they do have talking ones now that help you out, but if you end up getting everything that talks to you, it drives you, it drives you crazy. If your machinery just talks to you all the time, it just drives you mental, so I decided to get a, an old school microwave with like the turn dial and I just stick bump-ons, like little tactile markers where the numbers are.
Right.
And so I know how long I’m putting it on for and what temperature and everything like that and... They, because it’s such a large community with everyone doing different things, there’s so many handy little bits of advice. Like they taught me how to use a computer, what software to get, the, the Apple software, how good that is and all the accessibility features, and all that sort of stuff, that’s just handy little tips and tricks, and mobility – being out and about. Oh my God that’s what gives me my independence. I can walk down the street on my own and be safe. I can walk to the shops, do the shopping, help out my wife, I can walk to my school on my own, get the bus.
One aspect of life after injury can be anxiety, mood swings, and sometimes anger and aggression; this may be because of damage to the brain but also the frustration of not being able to do things so well. Techniques like mindfulness, meditation and cognitive behavioural therapy could help, and some felt exercise also helped with these problems and had the added bonus of promoting fitness, weight loss and increasing feelings of self-confidence.
(See also ‘Mobility aids for physical disability’)
Last reviewed October 2015.
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