For example about two years ago, my friend [name] 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, guy, the guys are getting a get together you know, at the [name of pub] 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 say, 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. Yeah.

But the thing is again I can drive a car, get in a car, what’s so strange, I had been in rehab about a year or so, and my dad said to me, Do you want to drive again I said, I’d love to. But if I can’t walk or talk driving a car’s not easy Let’s go to [place]. There’s a research centre at [place]. We’ll find out. I’ll come with you That’s cool. Went there, and when we arrived there, we signed in, so they give me the keys, and I said, Hang on, I’ve had a head injury. I’ve not driven for a year or two and I’ve had to have to walk and talk again, and you’re asking me to drive a car Yeah, come oh, I’ll be with you. it’s fine And I went in the car with her. I started the car and I just drove, in the secluded area. But I, I pulled away, clutch, brakes, change of gear all easily and I’m thinking, what the hell’s going on? But because my long-term memory’s good, I’m thinking I shouldn’t be able to do that because I had to learn again to walk and talk but it was easy.

Yes.

Just going back in. And it taught me how good the long-term memory is. How retentive it is. it’s fine. Yes.

Yes, because I’m able to Yes it is, and yes it’s not. I’m able to do many things I’m also limited on certain things. I’m also aware that I’m limited on memory, short term memory and stamina. So I know, because of my limitations I gotta be aware of what if? What if? What if? So for example, when I park my car I make notes where my car’s parked, because I know tomorrow or maybe in an hour’s time I’ll forget it. I can drive because my long-term memory is good. I can drive. You ask me where I’ve driven or where my car’s parked, I don’t know. I don’t, because I don’t know if I can tell you, it’s a worry. Yes, it’s what ifs again, what ifs, what ifs, what ifs. Yeah.

And what’s Headway mean for you?

Headway’s awesome. Headway East London. Again affiliated to Headway UK. They’re part of Headway UK, but they’re not; they are separate. It’s a great place. It’s a real joy to work there. Because it’s a job, a voluntary job, but it’s a job. And it’s a job I enjoy doing. They need. But it’s a real job, when you walk in the door there’s no labels. You wouldn’t know on the floor who’s a staff member, who’s a volunteer, who’s a member. You wouldn’t know. And because of that it really works. There’s a real community feel about it. If you want to find out who’s who the picture board is up, so you can find out if you need to, but it’s not important. And it makes it really work and it ticks along nicely.

We have a volunteer meeting in the morning, so it’s all about what the want is, we’re told whose doing what, who needs to be where, what the risks are today. And it’s just so, it’s an encouraging place to be. It’s a real can do atmosphere. It’s not, do you want to do this? We’ll see. You can do it, but when? It’s that kind of atmosphere. Yeah.

Yes. And so what actually do you do there?

As a volunteer I take part in the group sessions, so I will be there to assist members discussing certain what we’re doing in the groups. I get lunches. I lay tables. I tidy up after the lunches. I’ll help people to and from the toilet or going to and from getting smokes. It can be a real variety. Also I’m taking part in the Discovery Project. The Discovery Project’s part of Headway and it’s trying to enable people with injuries to do certain things outside of Headway. So I get involved in that, doing time-banking, entering into a PC.

So volunteering has got a structure, but equally hasn’t I go into Headway not knowing how my day’s going to be. I know roughly, but I don’t know and because of that it’s a real pleasure. But it’s encouraging because its voluntary I want to be there, and it’s nice. It’s really encouraging place. It’s not, if you want to do something it’s not, shall we see? It’s yes, but let’s see how we do it. You know, it’s good. It’s positive. I like it yes, yes.

You’re a volunteer now?

Yes.

Did you start being a member of Headway?

No I actually joined; I joined initially as a volunteer because, as I say through my insurance money, I get paid no matter what. I’m not looking for a job. I’m looking for a purpose. Headway when I was in rehab in [place], Headway North London, came to do a presentation about who they were, what they did, what services they offered to try and find members for the future. So through finding them there, I thought oh Headway. Let’s find out who they are. When I left rehab in 04 who, which one’s the nearest Headway to me? Oh Headway East London, okay. I went to an interview there and was accepted in as a volunteer. So it’s just purely by them being there while I was in rehab, I knew about them.

Okay, again, working for [investment bank], I’d been working for them for six years. I joined in 96 and had my head injury in 01. Now through that injury my life’s insured. Through that life insurance I get paid two thirds salary for life. it’s inflation-based, so I get a pay rise every year as well, which is great. But if I worked for money, for the money I would earn – I have also got incapacity benefits, but those two things are my income. If I work for money, whatever I earn, whatever it is – a hundred quid a week a month, a year, whatever – will come off my insurance money. So there’s no point in working for money, which is why working at Headway East London as a volunteer is perfect because I’m not working, I’m not getting paid, I’m actually working and helping out there and also donating money to them, so I’m actually, I don’t have that worry at all. But that’s also, thank God for that, because if I had to work for money, I don’t know if I could do it. Because I think the hours, the stress, knowing the job that I had before, I couldn’t do that job, I know. The worry and the running the team that I did then. I couldn’t do that. But even if it was a smaller job I don’t know if I could do it because of my memory impairment, stamina, because it’s uncertainty.

And that’s why I’m the way I am, because something in, I will do anything for friends or family.

For example, about two or three years ago, my friend I met in rehab in [place], called [name] lives in [place] and we also met up with him Wednesday or Thursday and he’ll come down to me or I come to him. He drives and I drive. One Wednesday he said to me, Oh I’d love to come over Adrian, but I can’t, I’m a bit short on my cash I said, Oh do you have enough petrol to get here Yes Get here [name]. I will fill up your car with petrol. it’s the least thing that a friend can do Yeah, butrdquo; No, no, just please do it The cost of twenty or thirty quid to see a friend, you can’t put a price on it. Thirty quid’s nothing for, to see that person to make sure they have a good evening. I want to see him anyway. I don’t see why that should be a reason. So where I’ve become much more generous, thinking, I’m sure I would have done that before my injury but I don’t know. But now definitely, money’s…Because of benefits and insurance money guaranteed no matter what, it doesn’t make me, lax, lackadaisical and also carefree. I’m still, being an accountant I’m still careful, but I’m also much more generous. I think it’s not a worry. I’ve got a guaranteed income anyway. And in the, in the environment as it is now, that worry isn’t mine.

Do you think you had any preconceptions about what survivors of brain injury were like before you had your injury?

I guess yes, I would guess straight away they’re in a wheelchair, whereas I’m not and a lot of people at Headway aren’t. There’s probably a third or half of them that aren’t in wheelchairs. And so you have preset conceptions and you think okay, head injury means this and it doesn’t always mean that. And Headway – say there’s 20 or 30 people in there on a given day – I wouldn’t say there’s, we’re not all the same. We’re not all the same. Our injuries are different in some ways. And it affects us differently in different ways and okay there’s a common thread where memory’s impaired, stamina’s impaired. So by about 3 o’clock for example, one or two people are yawning because they want to get home and get back into routine back home, maybe lie down and take it easy. So there are certain things are the same. But certain things again, as I say at Headway no, no one injury’s the same at Headway, they’re all slightly different. But they are all the same too. they’re the same but they’re different.

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.

I’ve had psychologists and therapists going through to help me recover again walking again, talking again, having a lifestyle again, cooking and cleaning. What made me laugh in rehab, we’d, I was actually under BIRT, Brain Injury Neurorehab Trust, [place]. They asked me to schedule to cook and clean. I was in my Transitional Living Unit in [place], and we had a schedule for cooking and cleaning. I’m like hang on, I said, Look you said to me, rehab is about relearning old skills that you had before. I never cooked or cleaned in my life They were like, What I said, Well I worked for [investment bank] the bank. I was doing long hours. I’d get in from work having got in from work say in the evening. My dinner was done for me by my girlfriend. We had a cleaner to clean the house because we were both working full time. So, I never cooked or cleaned in all my life, and you ask me to do it now And the answer to that was, Tough, get on with it And that is fair, and that is fair, because that’s true, because I did need to get on with it and learn it for my own good. Not, not for their good, but for my good. So I know what they were going on about now, but I’d say, Say you say me to relearn, this is new to me, I’ve done it before in my life I could it, but I never had to do it. Yeah.

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 evenin. 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 bes. 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.

Now I was, when I joined Headway in ’04, I was going to and from [local tube station] and getting the train and bus and paying the travel card. No one said to me I was eligible for a Freedom Pass. My accountant hadn’t told me. No one in rehab had told me. Even Headway didn’t mention it to me. I reclaimed myI was reclaiming on my expenses, so it was actually costing them to go to and from. Now, I was about a year or so into working at Headway, someone said to me, remember this was two or three years later in Headway, Have you got a freedom pass I said to that volunteer, Hold on, how come you’ve got a Freedom Pass Oh it’s eligible. I’m eligible for one. Haven’t you got one No. No one said to me Oh yeah, you ar. So I applied and got one. So in a way I wasn’t aware that you were eligible for one, but you are, and it’s handy because that’s a free bus pass UK wide. Ok, trains I only use in London and if I’m going to, [place] for example, to see my parents, my section from London, [place] to London would be free, a bit from London onwards to [place] will be paid for, but I have to pay for that myself. But that’s the benefit it’s nice to have, the Freedom pass, because its freedom, it gives you freedom. Yes.

I guess having the options, having the Freedom Pass there and having the ability to go and from by bus, tube, train is good. That’s, they’re all there. I can take any of those.

Also the resources around’ libraries, getting online in the libraries if need be, having broadband, I’ve got broadband here, and just having the options there. If I want to get shopping oh it’s 10 at night, Tesco is open. So there’s things, there’s all options, you have more options here, maybe than elsewhere that I can do, things to buy, things to do, places to go. I’m not far from the M25, the A10s there… train station’s there. So I can get tubes over there. So if I want to get to and from places, I can drive. There are options; there are so many options that’s what’s nice about being I London. Also, because my long term memory is good, London’s what I know. I know London, so if you ask me how to get to Green Park I know its Victoria, its Piccadilly line. I know that, because I’ve done it time and time and time again. So I know London.

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.

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.