Life-changing injuries
Thinking about the future
After an injury people may have to rethink their plans for the future and how they will manage daily life, including work, family life and relationships, driving, travel and many other aspects of life. A key issue for many people we talked to was trying to keep optimistic, enjoy life and make new plans at the same time as living with uncertainty about their future recovery.
Sam is uncertain about the future but confident that he will walk again. This reassures him that...
Sam is uncertain about the future but confident that he will walk again. This reassures him that...
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In terms of my accident you know, I follow all the scientific kind of publications of stuff relating to spinal cord injury. You know, I’m very confident it’s going to be, if not cured, then on the way to being cured within sort of five, six, seven years. And hopefully by then I’ll have enough money to not have to work for a while. And perhaps I have enough money now not to work for a while, but not to work for a long time and just enjoy being mobile again. I mean, you know, it’s just a question of working it out really. So that’s a nice thing to think about, but it’s also a kind of, it’s a frustrating thing to think about because you’re not quite sure what is going to happen, it’s kind of uncertain. And people tell you not to think about it. But I’ve always found that it’s really positive for me to think about it, because it encourages me to not think about this time as wasted. You know, every successful life has to involve periods of hard work and this is where it’s going to be for me. So I try and work hard, and you know, and still play hard as well, but you know, that’s the future is like getting my legs back and then continuing to live my life.
People talked about balancing living in the moment with thinking about the future, and making plans and setting goals. For some it was important to have definite plans and targets, like going back to work. But for others taking each day at a time and focusing on what they can do was the best approach.
For Amy, the only way to happiness is to focus on what she can do and embrace life.
For Amy, the only way to happiness is to focus on what she can do and embrace life.
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A lot of time we want to focus on the things that we're not going to be able to fix and sometimes people pin their happiness – if only I had, if only I could. But the thing is that the way to happiness is not grabbing what is not there. The way to happiness is taking in both hands and embracing life that is there and that's one of the things that I've learnt to do. So it's a combination of strategy and it's a combination of rehabilitation and hard work and acceptance. So accepting the limitations is not giving up, accepting limitations is taking a realistic look at what's there; but doing everything you can to work around it first and then if it can't be done then you will learn.
Getting back to work as soon as he can is important for Ambrose. He feels he needs structure and...
Getting back to work as soon as he can is important for Ambrose. He feels he needs structure and...
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Well, because it is going so well, I’m, as soon as I’m physically able to, I’m going to get back to work. Because like I say before, because I need structure – just sitting around all hell breaks loose [laughs]. So, yes, at the moment, you know, the future is as I imaged it to be, you know, when we were having the discussions about what is the correct treatment? You know, so it will be, you know, get better, get used to the leg, go back to work, you know. And because I’ve, you know, chosen to have this done myself, you know, it is a part of a very definite plan of right that was how it was, that didn’t work, change it to this, carry on. It’s not going to be that thing of oh it’s terrible, and I can’t do this and I can’t do that, and so I’m just going, you know, get assigned to the sick bench for the, you know, for the rest of the time. That isn’t, you know, in the plan at all. The plan is, you know, we’ve looked at the situation, that is what we’ve chosen to do with a view to, you know, going back to work and then carrying on as it was six years ago. When it was, you know, it was reconstructed, I had a build-up shoe but it was fine, I could work, I could go and do whatever I wanted to do, where I want, when I want, and that’s, you know, sort of where I want to get back to, but just with, instead of having of having a build-up shoe and a reconstructed leg having a prosthetic leg. But being at the same sort of point psychologically and physically if I can work I’m happy, everything good.
While for some it was a question of getting back to their old normality as far as possible, others felt they wanted a new start.
People often made more progress than health and social care professionals thought they might. This was heartening and reassured them that there was hope for future recovery. Jamie felt that if he continued to work hard he would be able to walk again. But Amy said it was important to decide what it was worth working on, and accept that certain things could not be changed.
He knows his life is different from before, but Simon A is determined to keep trying to improve.
He knows his life is different from before, but Simon A is determined to keep trying to improve.
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I know now that I think I did at the time. I know now that I won’t make well I know my life is going to be different. But I will never give up trying to make improvements and to, because I know the brain is, I know improvements can be made many, many years afterwards and it’s not just limited to two years. You know, I’ve read some research to suggest that you make, you can make significant improvements, even ten, twenty years post head injury.
Part of people’s expectation for further recovery involved hope that advancements in treatments would improve their prospects. But they were warned to be cautious about unproven treatments. Juri was advised by his doctor not to trust anyone who said they could fix his damaged eye, because “they would just get my money.” Aids or assistive technology could also help.
Bill wanted to take part in research about using titanium to re-grow bone after amputation, but...
Bill wanted to take part in research about using titanium to re-grow bone after amputation, but...
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I’m not a giver up. I don’t like to give up but it, the problems were too much. I was going to volunteer for a new process. This is very interesting. And that’s probably a way for the future and it’s called ITAP and I can’t remember what the initials stand for, but effectively what the research has done by some really clever people. This lady doctor, she wondered how a deer can grow antlers through the skin of its skull and no infection and no problems come in through the point where the antlers come through the skin on the deer’s head. Titanium will grow, not the titanium, but bone will grow onto titanium and the titanium will not react with your body.
Consequently you have titanium implants for teeth, for example, and they work really well. So what the idea was to put a titanium rod through the end of your bone, and attach it and cement it into your femur, and they were looking for volunteers. I was thinking of doing it, but I’d had a lot of problems mental problems and other things that were going on in my life. And the family came to the decision that they would rather not me experiment with something that might cause a problem and further amputation higher up for the future, so I decided to wait and see whether it works or not. And if it does work then I might consider it in the future.
But what they do, this, this titanium rod comes out through the bottom of your stump and they hopefully seal around the skin attached to the titanium thus causing a seal so bacteria cannot get in. But I don’t know how successful it’s been. But it’s certainly a way for the future, because if you can get away from sockets and the artificial thing on the outside of your body, and actually utilise the skeleton that remains then I’m sure for the future that would be a lot better. So that’s interesting for the future, but it’s probably beyond my situation now, you know, I’m getting older. I’m not getting younger. No one does.
Rob is taking part in trialling the BrainPort device. Even though he cannot see, this device...
Rob is taking part in trialling the BrainPort device. Even though he cannot see, this device...
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And it’s got a camera on it, in the middle. I can show you it in a bit. It’s got a camera in the middle and it’s got a wire that loops down onto your tongue and on the tongue it sends off electrical signals and it builds like a two dimensional picture of what’s in front of you on your tongue. So everything that’s like in contrast so any black on white, or any dark shades on light shades. Like it will paint the two dimensional picture on your tongue and after a while, your tongue, you learn to sort of see this two dimensional image there. So, you know, if I was looking at the table there’d be that shape on my sort of tongue, if you know what I mean and I’d be able to see that there and. Like, people like, like women especially like my wife’s got dark hair, so I can see the outline of her hair. And I can see like where her face would be, and like the outline of her hair, like going down. It’s quite cool. It’s a new piece of technology that’s being tried out, and luckily I got on the trials for it. Yeah, it’s really good and hopefully it will have, hopefully it will take off in the future. Like it will really get better. It’s in the crude stages at the moment, but it’s still quite a handy bit of kit.
I mean this is the sort of test version of it. So I got this about September and I’ve been using it a bit. But there’s a newer version coming out with a few more points. So, like the pad, the pad that you use here has only got so many electrical points that it can put onto you. Like I think at the moment it’s on 400 and the next one coming out’s 600. So it’s just a little bit more detailed. And yeah, it takes some time to get used to it and actually know what you’re, what you’re seeing with it. Because it’s like a two dimensional image, black and white.
People of course wanted to become more independent in the future as their recovery progressed. Nick Z hoped the level of care he needed would decline. As well as physical improvements, having enough money was an important factor in becoming more independent. Like some others, Wesley was currently living at home with his mum, but wanted to get his own place.
Wesley lives with his mum. He would like to get his own place, but can’t afford it just yet. He...
Wesley lives with his mum. He would like to get his own place, but can’t afford it just yet. He...
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So, but yes, it has crossed my mind, but at the moment, until I get my own place sorted out, then no. “Do you want to come round tonight love?” “Yes, where we’re going?” “We’re going back to Mum’s.” Not really going to look too good is it? So until hopefully I’ll have my own place in the next, I don’t know four or five months, because I’ve been looking at places, but I just can’t afford them at the moment.
So is it only money that’s holding you back?
Oh yeah, yeah. Well the thing is I’ve been with my sister to look at I think, I’ve been with my sister to look at two properties. I’ve been with Mum to look at about three properties. But with the money I earn, I can just about afford it, but then I have to rely on getting help from the government because if I didn’t get help from them on the money I earn, no, I couldn’t afford it. I’ll tell you what I take home, about £250 a week. By the time you’ve paid your rent, your bills, your food, that leaves you with what £80? It’s not really you know, I’d have to give up my mobile phone and everything like that, but I’d I say until I get my own pad, hopefully in about four or five months, then no marriage is off the question you know. But as I said I don’t particularly want to go yet, you know, come back to my place yes. Yes, let me go in first and just tell my Mother you’re coming in. You know, “Mum, Mum she’s coming in and staying the night.” “Yes, she’s staying in the spare room, Wesley.” So I’m going to knock that on the head until I’ve got my own place.
I think it’s a little bit weird.
Jane would like to start a new relationship now she is feeling better. She would like to have children, but suspected that because of her injury, she will be very protective of them. Rob and his wife were expecting their first child. He knows that parenting with a visual impairment will be hard work, but he can’t wait for the baby to be born.
Jane wonders if she could cope with having children. She thinks she might worry about and be over...
Jane wonders if she could cope with having children. She thinks she might worry about and be over...
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And do you think that your experience so far will have any bearing on your parenting?
I think I would be very, very over-protective about children’s heads probably. I’m bit worried about that actually, because I’m from New Zealand and I quite like the idea of letting children rough and tumble a bit as well. But I know that I get quite cagey about children getting hit on the head. So, I think I worry about that. I probably do worry, like I’ve just spent some time with my friend and her two little children in the last few days and I do think it looks exhausting actually and I do worry about that, but I think probably any one sane should worry about their having children. So probably, you know, I just have to get on with it. But yeah, I do sometimes think, “Oh gosh could I cope, actually cope?” with [laughs] like two year olds and babies and crying and screaming, but I think the advice that the psychologist gave me back in New Zealand about just making decisions about what’s important and, and like I think she said, “Look if you can’t breastfeed, so what.” Like, just, you know, and I’d be absolutely pro-breast feeding. But she was like, “If you’re too tired.” You know, and I think, I think maybe I have learnt to cut myself a bit of slack as a result of the accident, so, which is probably good to go on to motherhood cutting yourself slack as well, so yeah.
Rob knows that having a baby will be hard work. He is being supported in learning how to look...
Rob knows that having a baby will be hard work. He is being supported in learning how to look...
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Hard work. It’s going to be, it’s going to be hard work. But you know. it’s just… it’s going to be hard work, but just so worth it. I’m not regret a minute of it. I just cannot wait for him to be here. Join our family.
Yeah, okay. That’s good. Yeah, what I was going to ask you was have you spoken to St Dunstan’s or anybody like that about you know, when the baby arrives?
Yeah, we they’ve booked for us, I think it’s an antenatal classes and it’s, basically, they’re going to focus on like baby care with being visually impaired. So, because of my visual impairment they’re going to focus on like handy tips and tricks and, basically, good ways of looking after the baby from a visually impaired perspective. And that’s just going to be so handy for me. It’s just going to be absolutely immense.
And is it something you’re concerned about?
Yeah. Of course. I mean being a parent you’ve got 50% of the responsibility and I want to, I want to put in as much work as I can. I mean, it’s not fair on Em to have to deal with me and deal with our son and it’s too much work. I need to be able to look after myself and take part in looking after my son as well. I mean I’d be proud to be a father, and I need to, I need to take responsibility when I’m doing that. There’s no excuses, like being blind isn’t an excuse not to, not to help out and do as much as you can for, for your child.
People also anticipated they might be at greater risk of other problems because of their injuries. Some of their concerns included future pain, infections or illnesses. They put in place strategies to prevent or postpone them, which included adopting a healthy lifestyle, exercising and having a good diet.
Since his spinal cord injury, Nick Z is at risk of developing pressure sores and skin ulcers. He...
Since his spinal cord injury, Nick Z is at risk of developing pressure sores and skin ulcers. He...
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What do you have to do to protect yourself against pressures sores or skin ulcers?
Well again you get taught a lot about prevention in the Spinal Injury Unit. When you’re there. So it’s about building up the tolerance of your skin. So, for instance, to begin with you’ll be turned when you’re in bed at night. You have to turn every four hours to make sure that you’re not lying on one patch of your skin for too long. But over time your skin develops tolerance and you get taught how to, you know, shift the pressure around, as you can. So, by leaning forward in your wheelchair or pushing yourself up, if you can and how often you need to do that. And then there are simple things like making sure that your, the clothes that you wear aren’t too night, trying to make sure that when you’re in bed you’re not lying on anything hard or that your sheets are not creased. So, I mean, touch wood, since the sore that I developed when I was being repatriated, I haven’t had any major skin problems since then. But I have got a large scar on my sacrum, which is just above your bottom. So it’s the hard area around your tail bone. So I’ve got a large scar there, which obviously is going to be sensitive skin tissue that I’m going to have to be careful of.
Do you have to check yourself for sores?
Yeah, you have to check your skin regularly. So certainly first thing in the morning and last thing at night, and if you if you get, new clothing – so especially trousers or shoes or socks – you must check your skin before you wear them for too long at one time to make sure that there aren’t any seams or areas that create pressure. So I bought myself a pair of ankle length boots and I developed an early stage sore on one of my ankles because the leather was quite hard so it was pressed against my ankle. But fortunately it disappeared over a few days so it was just a redness of the skin. So the skin didn’t break down and it went away. But you’ve got to be careful.
And do you check yourself or does somebody help you with that?
Well both. So I have a helper who helps me get dressed. Well, helps me with my bowel management routine and with my washing and dressing in the morning, and with my hand and leg exercises, and with my going to bed in the evening.
People who’d had a leg amputated said they tried to take care of their good leg because they feared it would be damaged in the long-term from increased use. Jack said this was “just one of the limitations” of his condition. Nick Y tries to minimise the damage to his good leg by sometimes limiting what he does. He said, “I actually do less. I tend not to push it”.
After injury the future can seem worrying and uncertain, but it can also be a time for discovering new aspects of yourself. Amy felt she’s done lots of things since her brain injury that she never would have done before. She said that injury is “not the end of the world”.
(See also, ‘Recovering and establishing a new identity’)
Since her injury, Amy has had opportunities to do things she wouldn’t have done before. She is...
Since her injury, Amy has had opportunities to do things she wouldn’t have done before. She is...
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So I also work with doctors and students in developing nations where I act kind of as a mental health consultant and I also help them prep their papers for journals because their papers are really good but they're some other kind of country English so when they send them to an English journal or British journal then they're not accepted because they're not in quite the right format. So we fix some of that up and we edit and we put them together and it's; just has been the experience of a life time, all the wonderful things that I've been able to do that I would; if I hadn't had the brain injury I would never have had a chance to. So although I'm not grateful for the brain injury and I wouldn't wish it on anyone. Any kind of injury that you have it's not, it's not the end of the world and…
People say did it make you more compassionate and I would have to say no. I was compassionate before as much as I could be. I might be a little bit more aware but mainly it's just opened up other unexpected and amazing doors and I just would like to encourage anyone to not think of yourself as always in recovery or as a brain injury survivor or a spinal injury survivor. You're more than a survivor, you're a person and you're a person for us before you're a survivor and it's so critical to know that, just to see yourself instead of a victim. See yourself as victorious as doing something in life and not to look at what you can't do but look at what you can do and go forward and give it a hundred percent. If people disrespect that that says more about them than it does about you and people are encouraged now sometimes they meet me and they hear my story or different parts of my story and they feel more comfortable with me now than they did before I had a brain injury because before I had the brain injury they didn't feel that I was approachable or that I made mistakes which of course I did just like anyone else but after the brain injury they were so obvious there was no hiding them. That, but in a way it made people more comfortable so do remember in life you know it's , it's, we're all in this together. We have a limited time and so let's each one of us make the best of it.
Last reviewed October 2015.
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