If you could give a message to people who’ve recently lost their sight, what would you say to them?

[long pause]

Cor! That’s a tough questionThat’s a real tough question.

Why is it tough?

Because when I lost my sight, the last thing I wanted to hear from anyone was you know you’re going to be alright. You know, like you know. it’s going to be all right. Like everything’s going to be, like everything’s going to fine like, you’ve still got everything, if you know what I mean.
it’s the last thing I wanted to hear from people. I don’t know. I didn’t want anyone’s pity. I didn’t want anyone to feel sorry for me and… it’s tough to, I don’t know, sort of give advice on something like that. Even though I’ve been through this, and I know, I know some of the feelings they’ll be feeling I won’t know, I won’t know everything these guys are feeling like.

Maybe if we think about it in a different way. But, I suppose, how would you sum up your experience maybe?

Yeah. You know, I’ve lost my sight and it’s not an option for me that I’m getting sight back; I know I’m not getting my sight back. So I can either throw in the towel and be miserable or I can get up, I can be motivated. I can do what makes me happy and I can still seize life. I can take every opportunity I need to take and you know, be happy where it’s possible for me to be happy. I mean it’s still life and I’m still going to have the usual ups and downs that life brings, but, you know, I’m alive and happy to be here. And I appreciate being alive.

And then I think the other thing is that it does get better. It might get worse before it gets better and do bear in mind that that period between discharge and having settled into a new way of doing things at home can be at least psychologically more challenging than anything in hospital.

But over time things do get better. And I’ve only been out for a year and, you know, I’m, I’m already going to the cinema and theatre and restaurants, and am able to go out and visit friends in their homes. And you know, go shopping. I’m able to make a valuable contribution at home, you know, in the house supporting my wife with my children, you know, helping them with school work and, you know, reading with them and… So it’s different and I’m not going to make out that it’s anywhere near as good as it was before, but it does get better and I think the longer you’re out and, certainly the longer you’re out and stay out of hospital, the better it gets. That certainly seems to be the experience of people who’ve been injured for a lot longer than I have.

I would say get your friends around you, you know, your family is going to be too traumatised to really help you in the way that you want to be helped. Find the thing that you do well and get back to that. And you have to believe that all things you’re doing which are hard, will get easier. And you know, it’s, there’s nothing corny about it, it’s like hard work. But there’s a joy to doing something hard well. And, you know, you have to learn to enjoy and to be strong. And, you have to set your standards for, for how you’re going to behave, because it’s down to you and there’s no one you can really compare it to up to that.

And finally just make sure that you find out, you know, everything about what’s happened to you and what the other options are and don’t let other people make decisions for things which are really, really important to how you life’s going to pan out. So, yes, just do everything you can to get back in control.

Your future’s not, your future’s bright, though you learn all the time. You think you’ve learnt after a year what you can and can’t do. You’ll learn more. There’s always, you might not learn as much as you’ve learnt initially, but you, I’m always learning. I’m eleven years on, there’s still things I’m learning about how to manage my life better or how to do things, how to be more positive, how to make people more aware about head injury, about me, about my limitations. So it will always get better. You’ll find ways to improve and also you’ll, you’ll go through a period of time probably of being resentful, but then you’ll go through positive thinking’ I’m still here and life’s good. And life is good. And the more you can, the more difference you can make to others and make people aware that what head injury does to you and has affected you, how to avoid them having the same thing happen to them, but also don’t think about what you can’t do, think what you can do. That’s what I went through that period of time thinking what I can’t do, but I thought, no what can I do. I can do this and that. And so it’s think of what you can do. Yes.

Okay, so think positive and
Yes.

and give it time.

Yes. Exactly, yes, exactly, you know, give it time. Time’s a great healer. You’ll learn over time what you can or can’t do, and you’ll learn about who, also you’ll learn who your friends are, who your family is, and who you can trust and who you can’t trust. But, but you’ll find a purpose and there is a reason. You might have time on your hands to do things and you’ll find out what fits in with you and you’ll get, you’ll improve.

Time is a good healer. don’t give up on hope, and don’t let those around you give you sort of absolutes, right, because you can’t give up on that. My wife has been fantastic in many, many respects here. However, one of the things that she, because, mainly because she’s scared, she has turned round and said, I don’t think you’ll be going back to work Or, I don’t think you’ll be going back to work in your previous job in that, doing that role. I don’t think you’re going to be able to do it Well that, that’s hit me pretty hard. I didn’t like it, because and it was actually at the previous neuropsychology session that we both attended that actually the psychologist turned round and said, No, hope is very, very important here. don’t take that away. don’t forget it. Take it away. Hope

So basically time, hope and look for others experiences. If you look there’s an awful lot out there. This hopefully will be part of it. But, as well as that, Headway, fantastic charity and, provides a lot of guidance, support for people that have had brain injuries.

Likewise this [retreat location], and it is it’s everything. Everyone that goes to these sorts of retreats, goes for a reason. Invariably something has affected them very traumatically. And it has affected them mentally whether it’s a physical injury such as I’ve had or an emotional injury caused by whatever situation there. There is an awful lot out there, but don’t be shy in stepping up and saying I’ve got a problem, let’s do something about it. Because if everyone can do that, everyone can admit it, it then it doesn’t become such a stigma and without it being such a stigma the disability element of it deteriorates.

Stage return. I would certain encourage people not to return full-time straight away, maybe part-time, or if they lose their job, start volunteering. Or start finding a way back into the working world. Because it brings, it brings a whole new life to you. If you’re not stuck, if you’re stuck indoors seven days a week because of disability and not leaving the house, you’re probably depressed because you’re stuck indoors as much as you’re depressed because you’re disabled. So to have something to get your teeth back into is, is important, I think. So I found that although work can be quite demanding and quite hard, I think it’s, in many ways, something that I’m really glad I’m engaged in. Because everyone needs something to get out of bed for. And for me, I like my job, so I don’t mind getting out of bed for it.

Julie:Photograph albums. Do a photo, do photos through the process, especially from the beginning, that they’ve got something visual to see because if you don’t have a memory of something and somebody’s telling you something it’s not the same as being able to visually look at something, and I think because they’re already coping with what’s happened to them, I’m glad we did the album. When ready, when Wesley was ready to look at it, it gave him a pictorial process I suppose.

Corrie:Yes, yeah.

Julie:Because I’d experienced previously, speaking to people, as I say I had a few youngsters with me at the time, who couldn’t remember anything and when they would ask family well what was I like and what was this?

Corrie:Describing it is very different.

Julie:It’s very different to seeing something visually. And I think it’s, it’s good for the person when they’re ready. We didn’t force him did we?

Corrie:No.

Julie:We just said to him, you know, when you’re ready to look at it you can, but I think it was definitely, I’m really pleased, I don’t think other people thought that when they first saw me clicking a camera of him lying in bed in a coma. But I knew why I wanted to do it. And I’m glad I did because I think, I think it’s helpful to the person whose, whose had the injury, because they’ve got something tangible in front of them.

No I think the biggest thing is to realise that you don’t have the same person that you had. You don’t even have, I know you shouldn’t have to say that, because you’ll know that, you can tell by the way things are working in the house, but from there then you have to say, all right. How am I going to make this marriage continue? What do I have to do without compromising what I know is right and what my spouse knew was right before? How do I make sure we don’t compromise that? But how do I talk to them so that we can work through this? And the thing is that with anybody, but especially a person with a brain injury, once you realise you’re wrong, whether you admit it or not, once you can realise you’re wrong, then you can start to make adjustments. And I think probably the biggest thing with a spouse is that, this is where we have to be extremely careful, is that for instance if I was a spouse and I knew I wasn’t speaking right, and I’d made a decision not to speak wrong again, that doesn’t mean I’m not going to speak wrong. But if I told you that I’m not going to speak wrong, and now I’ve spoke wrong, your immediate reaction is, or the spouse’s immediate reaction is, Why’d you do that? You said you weren’t going to So we have to be careful because they can’t always do what they know they should do. And they may have even made a decision to do it and not told you. But then if you criticise them, in a harsh way, their immediate reaction is don’t tell me what to do. So you, you, you have to learn the balance of trying to, don’t compromise what you know is right but how do we talk to the person, and you can have some serious fights, and we did. But I believe because we made it a conscious decision when we first got married we would never be separated.

So you know, I know they’re under a lot of pressure and if you’re under a lot of pressure from external sources it’s easier to forget who you’re really accountable to, but you know, the things you do will affect people for the rest of their life. So you know, you should act accordingly.

And for the ones that do you know, Christ, I love these guys. You know, there’s nothing like an amazing doctor, who is, you know, really warm and really there for you, and really understands and, and, you know, you can tell they’re making an effort and they care what happens. Those are the guys that everyone should aspire to be like. I say guys and girls, they’re the ones they should aspire to be like. And don’t be so scared to give people hope, you know, I don’t think that’s such a bad thing. I think people can cope with, you know, occasional disappointment. it’s just bleakness, which is very difficult at the beginning. I think yeah, yeah. I think that’s it.

Yeah, well health and social professionals. I think if they show like [name] and [name], these two ladies, as far as I am concerned they’re icons. Because they have a way in which they deal with people with brain injury or people with disability. They never make them feel worthless or useless. They make them feel valuable. I think if health professionals get that over to patients then I think they can, they will help those patients, they will help patients or people with these issues to really get back on a road to some form of recovery or whatever.

Julie’ My biggest gripe I think, outside the units is that they lose sight of how to communicate with the family. And they don’t know how to do that and work together and I think you could achieve a lot more as a professional if you worked together with the family. You could do more and achieve more, because most family members, like when I was there, I was happy to do what I needed to do. And there’s a lot of family members that would say, if you show me how to do it, I can do it when you’re not here. If you showed me how to do this, I can do it myself while we’re sitting in the room and work together, and I think sometimes the professionals lose sight of that. They lose sight of the fact that they could get a lot more from the family if they were more inclusive rather than but I’m the expert, you can’t do that. You show people what to do and what they can achieve, isn’t it? And work towards that. They forget that they’re talking to human beings basically. I think.

Corrie:I think that’s true in a number of cases, they just seem to get very focused on what they need to achieve but sometimes they probably don’t even realise that their mannerisms and the way they’re speaking because they’ve come across this situation a hundred times before, actually the family members that are there, this is their first time and it’s a very emotional time and to, just someone’s tone of voice or tainted attitude or eye contact or communication can make a huge amount of difference in reassuring the family members, and just being honest and say look, you know, there’s not a lot else that we can do. We need to figure out a plan for going forwards, we need to make sure that his day to day cares are looked after. Don’t have any answers for you. Just having that bit of time. And it’s not, it’s not true in all cases, it’s just we came across a number of different doctors and nurses and therapists with the various hospitals Wesley was in and it was quite clear that the people that took the time to do that, reassured us an awful lot more than the people that may have given us exactly the same factual information but didn’t give that element of reassurance. And you don’t expect people to say, Don’t worry, everything’s going to be absolutely fine. You just want people to be a bit open and honest and you know, at the end of the day some of the health care professionals, they’ve got their own lives and they’ve got other things going on that are going to impact how they behave at work, but it’s keeping the focus on, I need to remember the fact that this person has got their son lying there and they’re worried sick about him. I need to make sure that I give the right message to reassure them and not to upset them any further.Which some people are fantastic at it and some people aren’t, and sometimes it’s not in people’s natures anyway [laughs].

Head injury is the hidden disability, so it’s not obvious that someone’s got a head injury or not, it’s not always obvious that they’ve got head injury. We, I carry a card on me that proves to someone that I’ve got an injury, so I carry this card here.

Hm.

That just tells someone that I’ve got an injury

Yes.

And it says, I’m a survivor of brain injury. I may have problems with my memory, speech or actions. Your help and patience will be appreciated. Its quick card and I can say to someone, Sorry I can’t remember where my car’s parked, or I’ve forgotten whereabouts I’ve sort of left my bag. Whatever it is it means look instead of going to someone, Look at the scars, I’ve got a head injury That’s a card that summarises basically the problems I’ve got. Yes.

And have you had to use that before?

I’ve had that card seven years, I’ve never used it, but it’s always there in case I need to. That’s what I mean, I don’t want to go…I’ve been in the past said to someone, I’ve got a head injur and shown them my scars. I don’t want to do that. I don’t want to spend my life doing that. So having a card is far easier to say boom I’ve got an injury. I need help with this or that.