Who Are You Now?

Matthew

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cycst-cleaned

I'm like a guy with an axe that goes into a forest, chops down all the trees and builds a house. And on the very next day, a flood comes along and wipes the whole thing off. But he's left with a table, a chair and the meal he's going to eat. What do you do? Start crying and not eat the meal, or wipe your tears away and get stuck in?


6th February 2006

Dear Matthew

We have identified that the projects you are currently working on are coming to a natural end and, whilst there could be some requirement for similar work in the future, if it arose it would be ad-hoc in nature and a significantly reduced scale. Consequently, as of 6th February 2006 your current position has been identified as redundant.

Unfortunately there are no other roles within the company for which you would be suitable and we are giving you six weeks notice to terminate your contract of employment.

Your leaving details are as follows:

1. Your final salary payment will be paid on 28th February 2006.

2. You are entitled to net pay in accruement of 10 days annual leave, which will be included in your final payment.

Please confirm that you agree with the figures set above by signing and returning the enclosed copy of this letter.

Thankyou for your time with us and we wish you well in your future endeavours.

1 Not always true

When I was in primary school in my family's home country there was a subject called verbal reasoning. You're given a statement and you have to choose out of three options: always true; sometimes true but not always true or never true at all. There was a statement that said "everyone is born". The other students said "always true" – which made sense. I was the only one that chose B: sometimes true but not always true. The teacher did not understand why I would do that.

I said "some people are born but some people are brought out. Some people are born in the natural sense, and some people aren't born in the natural sense." He got my mother to come to school, and my mother explained that I was born by Caesarian section. I think the teacher was puzzled but he was open-minded enough not to shut me up, which was a good thing on his part, I believe.

2 Quite opinionated

I was born in Birmingham. I think I was four when we left the UK and moved back to my family's home country. It's in Africa. For my family's sake I'm not telling you the name.

My personality's never really changed that much – always very opinionated, quite bookish, wanting to read a lot, wanting to say what I think even if others might have different opinions – that's always been the case from a very young age. But also quite introverted, not too many friends. Lots of study, and lots of church as well, because my parents are Christians. From a very young age my parents gave me access to their library, so I could read a lot and form my own opinions. They gave me a lot of intellectual freedom, to think the way I wanted to think. When you are a young child in my family's home country, that's not the norm. Well, that's not the norm for the majority – so, going to the local school, it made the teacher … not quite concerned, but – intrigued. And because of my intention of always putting my point across, teachers always wanted my parents to come into school, just for them to have things explained to them.

During secondary school I was at boarding school and I got bullied a lot – bullied quite badly, so I really didn't have the time to face my studies. I spent most of my time trying to actually survive. In the country my family's from, corporal punishment is the norm. As a junior in boarding school I got caned quite regularly by my seniors. And when I became a senior, because I was quite small, and most of my juniors were much bigger than I was, they kind of roughed me up as well.

After school I went straight to a local computer college. I wasn't good at sports but I could run. My interactions were still limited to things I did by myself. Reading, and the computing work I did, and running.

At boarding school I had failed most of my papers. So after spending a year or two years just learning how to use computers my parents thought it might be best if I came back and tried my luck here, with respect to building a life.

3 I'll take care of myself

I moved back to the UK when I was seventeen. That was in '95. It was cold, December.

I was meant to stay with one of my dad's long distance relatives. They came from the same town. That was the plan, but when I arrived he wasn't around. He had moved to the States, so I had to stay with his wife and two young daughters. They'd never met me before, they didn't know me. I think I probably stayed with them for about a month or so, and afterwards they kicked me out. To be fair to them, it was obviously a difficult circumstance for everyone. And so it was only fair that they told me to find my way.

I think part of the reason I got kicked out was, if I remember precisely, I was asked, "well what would you like to do", you know, and I said I would like to go to college, go on to university and study, and I was told that wasn't feasible, that I should go get myself a job. For someone coming from the home country – without any contacts – to aspire to that seemed highly impractical.

My plan was still: get yourself an education. That was the only plan I had. I called my dad on the day I got kicked out and my exact words were "Don't worry, I'll take care of myself."

I started staying in shelters. I actually lived in Centrepoint, near Tottenham Court Road, because they have a homeless shelter there. I stayed there for a while. Stayed in various parts of the West End, and then moved back to the East End. You get a roof over your head at night, you get a shower, you get a wash in the morning, and you get some breakfast, then you come back later, at night. You have to spend the whole day out of the place because there's no lunch either.

I didn't know anyone. I met someone that I knew from my neighbourhood in my family's country, just by chance, but I don't think they knew that I was homeless at the time. I did not tell them. They had their own problems to deal with, so couldn't make my problem theirs at that point.

Did I feel alone? No. Being an introvert, you can't – aloneness is not a concept you feel. You're just with yourself, and that's good enough. But in the practical sense, it was not convenient. Not having a place to stay, it's highly inconvenient, by any description. And it had been very cold. That was very inconvenient as well. I was not quite sure what it is I was going to do. That was inconvenient as well. But I got into a night shelter and that was fine. It wasn't too difficult. The funny thing is I wasn't actually that scared of the circumstance. I spent six years in boarding school, so I was used to being by myself. I was used to being without my parents.

Then someone introduced me to a Franciscan friar, in Balaam Street in Plaistow, and they were able to offer me a place to stay. A single room – that's all I needed. Once I got that, I was able to find myself a job. I worked at Burger King for about a year and a half, and afterwards got myself a part-time job in security, nights, Friday, Saturday and Sunday. And once I had the week of five days, I decided to educate myself in that time. So, working three nights a week while studying five days a week. That's how I got started. My parents knew about it. They didn't have the means to help.

It was the first time I'd studied Maths and Physics and actually understood a single word. That was an absolute joy. I thought it was beyond me, but I was happy to see that – not quite. At Newham College there was an ethic to actually teach to understand, rather than teach to pass an exam, which was a change. I was there for three years. I mean, I was supposed to be there for just two, but I did not do too well at my first attempt at A levels. I'd been working 36 hours a week over the weekend: Friday night, Saturday night, Sunday night, 12 hours each. At the time I just thought, this is tiring – because, I mean, I never slept before coming to do my studies on Monday.

To be fair, there are people who have to work a lot harder than that. Some people have to work every day of the week while being a student but I chose to do it at weekends instead. I needed three As to get into Imperial, or at least two As and a B to get into UCL. First time around I only got two Bs and a C, and I decided it's best I earned less money, worked shorter hours, and re-took my papers. I got myself a small council flat in North Woolwich – that's where I still live today. When I did my A levels the second time, I got into UCL.

4 A tree = a plan

Work and study. It was really that simple. And I ran a lot, as well. When I started working, one of the first things bought myself was a good pair of trainers. It's something I enjoy. I really enjoy it. And it's freedom as well. I ran to UCL every day. It was fun.

I don't think my friends at university knew too much about me. When I speak to them now they tell me they thought I came from a rich family, that I had come to study at UCL because my parents had lots of money. None of them knew that I lived in a council flat in the East End of London. It never came up and it wasn't an issue. Do I tend to not connect with people emotionally? The answer is, yes, I do, but in a way I try to avoid it if I can. Unless it is excruciatingly necessary.

I was older than most of the other students, but UCL was hard, academically. It was highly competitive as well. Although it was hard, it was great fun. And there's this thing I call 'having a tree': a plan with many routes and options moving in time. I always have a plan for every five years of my life before it happens, so one of my plans was coming to fruition. So that was brilliant. When I started work after UCL, one of the first things I did was to start to learn Japanese. My intention was to move on to Cantonese and Mandarin, then – possibly – move to China or Japan at some point of my career. Eventually I also wanted to learn Spanish because of its usefulness in some parts of America, and South America as well. So I always had things I did to move my plans along.

After I finished my degree, I got a job as a programmer. I just stayed for a month at home, because my employer wanted me to learn some new programming language – spent the month learning it and went straight to work. Programming was the first thing that I ever did that I really enjoyed. And I still do today. I might not be able to work professionally at this point in time, but it's something that I enjoy immensely, so I still do it all the time. It's an important part of me – can't stop doing it.

It was amazing. It was the best job I've ever had, because a lot of the guys I worked with were very clever. There was a guy there who hadn't done A levels, hadn't been to University, but was a very good software engineer. He's really, really clever. So it was an amazing place to work. If you have to work with people who are obviously really clever that means you have to improve yourself, you have to push yourself and try to be as good as they are. And that helps you. It doesn't help you if you are king of the hill. I mean unless you are a proper king. Then you don't have to compete with anyone – that's fine. But if you are just a prince then you want to work with people that are much stronger than you. And if you're just an ordinary fellow like I was, it's good to work with people that are really clever. It pushes you, and you want to become more than you are.

Cyst scan 2
A scan showing the cyst in 2012, six years after the surgery
Scars
The scars I have now where they cut into my skull

5 Work harder

It was 2005. I think I was barely six months into the job when I became ill but I'd passed my probationary period. It started very gradually. I began to get very severe headaches, and I just merely presumed, well, OK, you're working too hard. I used to go to work on Saturdays, because I thought there were things I could do that needed more doing, so I thought, you're working too hard – slow down a bit.

Then I began to lose sensation in my limbs. Sometimes I lost sensation in my hands and my legs. I just thought, oh, well, you're probably running too much, yeah – relax a bit. Then I think just before surgery I began to get a very severe double vision. Really severe, so that I actually had to close one eye to work and to function day to day. And after a while I could barely see anything, because my vision was just totally garbled up. I think I went to Moorfields Eye Hospital on a Saturday, and that's all I remember. I don't remember anything after this, until I woke up in hospital.


Regional Neurosciences Centre

St George's Healthcare NHS Trust

29.05.07

Background

On 15 April 2005 Matthew was admitted to the Royal London Hospital after presenting with a one week history of diplopia [1]. A CT scan revealed a colloid cyst in the third ventricle [2] with concurrent hydrocephalus [3]. Neurosurgical intervention was required and he had bilateral external ventricular drains inserted to relieve the hydrocephalus, followed by a right frontal craniotomy [4] and subsequent trans-cortical excision [5] of the cyst. He made a good physical recovery but was left with severe cognitive impairment.


From what friends told me, for about a month I was just totally out of it. Though I was self-aware, I wasn't making much sense. But I remember being in two separate hospitals: one in Whitechapel - the Royal London - then at Whipps Cross. The only thing I remember – well, the only thing that's quite clear to me – was that I didn't really enjoy being in hospital too much. There are too many people, you're in a big ward. Very noisy. I mean, grateful for the experience that I got my health repaired free of charge. You cannot ask for more than that. But it's not the most pleasant of experiences, being a patient in hospital.

When I was homeless I had no fear at all. I was quite certain that I was going to be fine, I would find my way. One of the first emotions I felt when I became self-aware in hospital was fear. There was just a dawning sense that something was very wrong. I felt very cold and afraid.

From the start I knew my memory was quite badly impaired because in hospital the first time I went for a wash by myself I was there for hours. Take a wash, wash down, and then – oh. I suddenly come to, and do the same thing over and over again. And also I noticed that when I went around the hospital I got lost quite often. So, yes, I knew that I was quite badly impaired with respect to my memory.

I was excruciatingly tired all the time. Apparently, all I kept saying was, "I'm tired, I'm tired, I'm tired". A lack of concentration was one of the first things I noticed as well. Those were the first immediately observable things.

So I knew I had problems. But I was confident and I guess I thought, "well, you just have to work harder. If you work harder, then you will be fine."

6 Confabulation

I noticed the confabulation as well. Do you know what confabulation is? A false memory, or a modified memory of events. That was very uncomfortable. But you get used to it.

I think the first one I noticed, was, I was supposed to be at the Wolfson, in Wimbledon, for rehab. I was supposed to stay there for I think three months, but having spent three months in hospital and not having enjoyed the experience, I just couldn't be there. It was another environment with people in difficulty. People with very, very serious difficulties. I just couldn't take it. Just, I cannot go through this again.

I'd gone there with my mum and sister, I was supposed to be a patient there, and I went home. But the following week I wrote an email to the neuropsychiatrist, and said, "look, I was supposed to be a patient at the Wolfson, and you told me that I'm perfectly fine, that I had to go home. I can assure you I'm not very well at all, there's something very wrong with me." And they sent back a letter saying, "well, you did come here but you said you wanted to go home instead." And so I came to understand. The way I rationalised was: 'right, I've made a conscious decision, and the conscious decision hasn't quite matched what I feel is logical for me at this point in time, so to make sense of that dichotomy the brain made up a bunch of memory for me to explain that.' It made sense. But it was also uncomfortable that, well, my brain is not all mine.

When I confabulate, I cannot retrieve the memories very well, so in trying to retrieve them my brain struggles, then fills in the gaps with probable memories. And it feels very true. It feels emotionally and logically coherent, but it's often quite a false memory. And it tends to happen if the event I'm trying to remember has a very high emotional component. It doesn't happen often but when it does it is quite spectacular because it's quite obvious that something is wrong. Well, having said it doesn't happen a lot, I don't know, because I might not be aware of it.

7 Get back to your desk

I think one of the errors I made – I don't know if it's an error or a good thing – I left hospital after three months, just told them "I'm going home." And I think that was probably the right decision, because I think if I hadn't gone back to work my employer would probably have fired me.

Well, I just had to go back to work. Just to see if it would work out. I should have waited to get a better understanding of what I could do to manage myself. I think I spent about another six months at work before I got fired.

It was painful. It was very, very difficult. I mean, I went back to work five days a week, and that was just – it was impossible. I'd had no rehab. My memory was very bad. The fatigue was so bad it got to a point I wasn't actually getting any sleep at night because I was just so tired. I went to work every day quite exhausted. Around two o'clock in the afternoon I used to go under the staircase and just sleep for about twenty minutes or so, because it was a darkened part of the building, just to sleep – lie on the floor and sleep.

You're filled with doubt about yourself. I know with brain injury it manifests itself in various ways – some people are not aware that there is actually a problem with them and they are not aware that they are making errors, but for me I could tell there was something substantially wrong, and actually sense and feel it. So psychologically I was on the back foot, always doubting every single thing I did. Having an employer that would encourage you to do things would have been good, to at least give you an opportunity to prove yourself as useful. But with mine it was just: "Get back to your desk and do your job".

My colleagues were quite aware that there was something wrong with me. I'd changed so drastically, they had to tiptoe around me, so it was not a very pleasant experience. They did not talk to me about what they noticed, but they were friendly. They were good. One thing they did express to me when I got fired was, "look, you were very good at your job, before your brain injury, and we know this company have treated you like crap." And that was OK, you know? I could have taken the company to court but that did not seem very reasonable. I can understand their circumstance, they are a small company, they're looking after their bottom line.

When I went back to work, some family and friends said, "look, don't say anything to your employers." But I told them. Actually I was a bit unsophisticated in the way I described it – I think my exact words were "look, I'm brain damaged!" They didn't know what to say. They said, "what can't you do?" I said, "I don't know. I have no idea". I was so desperate to keep that job because I really loved it.

If I could advise an employer on what to do to help someone with a brain injury, I would say to get in touch with their neuropsychiatrist or the person looking after them and ask what you could actually do to help the person back onto their feet. Because the psychological part plays a huge role in getting yourself back. You need lots of encouragement and support even when you get things wrong. You're on your way back so you might expect yourself to get things wrong but don't worry. Just keep trying your best.

I was tested out at home after leaving hospital to see if I can actually function by myself. I mean, at the time my memory was quite poor, but I learned some techniques to cope with day-to-day living. And my Mum came to the UK to stay with me, so it was OK. I think she stayed for about a year, but she had to go and come back, because she is not a British citizen – she couldn't stay permanently.

My sister came to the UK in 1999 when I was doing my A levels. She supports me a lot – financially and emotionally as well. I mean, we're very different. She's an extrovert, she likes to be with people all the time. I'm an introvert; people are alright but in small doses. And so I think we complement each other, you know. We try to support each other as best we can. She's been an unbelievable help, because I had my brain injury while she was still in university, and she came to visit me almost every week, despite the fact that she was a student trying to get her degree. She's been very very supportive, been unbelievable, as a sister.

8 I look normal. And that is a problem.

Many times I think to myself, which would I prefer: to have my body impaired, but to be cognitively OK, and without the problems of fatigue? Would I like that? Because if I had that circumstance I would most certainly be able to go back to work without a problem. And, would that be fine? I guess so, because I would have a job. I would be in my career, I would just be in a wheelchair. But at the same time… it's a very hard bargain. The brain is highly modular in the sense that different parts do different things. And if you injure a certain part it doesn't mean the other parts are injured. They might be working well.

So, from my neurological tests, the actual skill of reasoning logically and thinking precisely – fine. It's actually really good. The problem is the memory. Because to write a piece of software you have to speak to the clients, listen to what the clients want and read the recommendation of what the client requires from you, and that's where my problem lies. But that doesn't mean that once the information is there I cannot think logically and precisely. The problem is the speed of thought and retaining information to think about the information. That is the big problem.


Regional Neurosciences Centre

St George's Healthcare NHS Trust

29.05.07

Effects of Brain Injury on Concentration

Matthew has suffered a decrement in his non-verbal reasoning abilities and his processing speed. His ability to attend and concentrate and to hold information temporarily in memory for the purpose of performing a specific task is impaired.

His ability to remember information is impaired and now only exceeds 1% of his peers. Matthew is generally unable to follow the track of a conversation for more than 20 minutes and is unable to answer questions about what was discussed 20 minutes earlier.

Overall, his cognitive impairments severely disable him but his intact verbal abilities mask the severity of his disability. He is not always aware that he has lost track of a conversation or task, as he forgets what he was supposed to be doing. For this reason he often does not make others aware of the problem. Instead he may suddenly break off and start doing his own thing, such as reading the newspaper or searching through his bag. He may also silently withdraw from interactions rather than asking for help. Such behaviors usually represent him trying to re-orientate himself but to an independent observer he can look as though he is bored or uninterested.

Despite the fact that I can speak quite clearly, despite the fact that I can reason quite clearly, I still have problems and they are undeniable. One of the difficulties I have is being able to organise myself. Any time I go to the shops I walk around in circles, looking for what it is I'm trying to buy, because… because of my memory and my executive problems. And I pass by the vegetable stall many times before I can notice that, oh, yeah, – that's the vegetable stall and that's what it is I want to buy.


Ability to perform Activities of Daily Living

Matthew requires prompting to maintain all high-level aspects of daily life (e.g. financial management, time management, planning and organising appointments, and his daily routine). He has learnt to use compensatory aids to assist him with some of these tasks but he would require support and prompting to manage if there was a change to his routine or he was faced with a novel task or problem to solve.

Ability to Return to Work

Matthew requires longer than most of his peers to process information. He is likely to require substantial one-to-one support for a long period of time in order to enable him to adjust to changes that may occur in a work place. His cognitive deficits are so severe it is difficult to know whether an employer would be able to offer him the support he requires.

My flat is always in a mess, because I leave things everywhere. You might say, 'well, but that can be anyone'. But for me it's a great difficulty. Although I try to organise myself and, say, put things in a very specific place, I often forget to do that. And I mean I don't know if it's the fact that I forget or I'm just not able to organise. So, for example, working in a library, I might mess things up, say, or having to stack shelves – I'd probably do it very slowly, because I'd have to remind myself constantly where to put things, how to put things, where they're supposed to be. And that might be a problem for my manager. I mean I have the same problem at my voluntary work – I forget to do the things they tell me to do after five minutes. So. What can I say?

You could say, 'go sweep the streets'. True. But after two days I would be absolutely exhausted. And the exhaustion isn't a mere tiredness.

I would fully understand if someone says, "pull your socks up, man. Just go and do something." If people don't get it, it's fully understandable. I look normal. And that is a problem.

In the nine years since my brain injury I've lost four jobs and for most people after the second job they would have thought, time to take a step back and try to do something else, or not do anything for a while. So, lost four jobs. I wouldn't say I'm proud of that, but it's good in a way. It shows that I've got resilience. If I fail, I pick myself up. I'm not where I thought I would be – but that's life. You have to make the best of what it is you have. I'm a one-trick pony: work is all I know. You work hard and everything will be solved.

I'm the first son of my parents. I have to be able to help them. Financially, that's crucial for me.

I had to relearn a lot of things after my brain injury. I lost confidence in myself and I'd forgotten a fair amount of things as well. So now I work at home on algorithms and the fundamentals of programming, rather than trying to build a massive piece of software. Re-learning and trying to understand the basics. It's very pleasurable and it keeps me in touch with what's happening in the industry.

I would like to get a new career and be back on my feet some time in the future. Hopefully in five years time; hopefully, hopefully. When I look back, it's incomplete. Incomplete. That's all I can say. But I haven't done too bad, given … It's incomplete, but that also gives me confidence for the future.

9 Are you OK?

It's taking me a lot longer to rebuild my life than I thought it would. My brain injury was in 2005 and I presumed that by now I ought to be back in a career and moving on with my life again. It's now going on nine years and that hasn't proven to be the case.

At my second job one of the greatest problems I had was the noise. The radio was always on, I was always frustrated. Because my brain injury is to the frontal lobe, noise is a problem for me. If there is noise in a place I lose my rag completely [6]. The place where I volunteer now, the GLV … no offence to anyone, but everyone in the office is a woman, and when they work they are always talking. So there was a day I lost my rag and said, "I'm going home", and they said, "is there a problem?" I said, "Absolutely not".

There's only so much that can be done for you – it's such a very specific thing to ask. You're effectively telling people, "change the workplace for me". And that's too much to ask – I think. It seems unfair to the employer to have to bend their work environment because of a single individual; it just seems too much to ask. But if they can do it it would be absolutely great. That would be lovely.

I'm disinhibited. Because my injury is to the frontal lobe, the boundaries of the way you behave toward your boss for me is slightly blurred. If someone has pissed me off, I will let them know very quick. And you cannot behave that way in an office. At Rehab UK [7] someone offended me. They have an open plan office, I went in there and I gave them a full blast of my verbal swords. You don't do that. So that gets me into trouble.

And then – at Ability Media [8] I was meant to change roles and they asked me, where would you like to work? In the office or downstairs with the students? And in front of everyone, I said, "I cannot work in this office". The guy said, why? I said, "The management style blows, I cannot work up here". Afterwards I thought, "Oh my God. What have I just done?"

Behaviourally I have problems, and there are actually some I feel quite embarrassed by, because of the disinhibition. Sometimes I stare at people, and it takes me a while to notice – "oh, dude, man. Get out of it". It's just the way my brain works. I do it to my family as well.

So it manifests itself in many forms. I mean, I do apologise because it's not purposeful. Now on the other side, I think a couple of weeks back at the other place I volunteer, there was a lady at the desk, she was very miserable. Well, she looked miserable, as far as I could tell. And everyone just walked by. I said, "hello, how are you doing?" and when I went to the desk and signed my name, I looked at her and I said immediately, "you look miserable". That's not the social convention. People say, "oh, are you OK?" I announced it! I said, "you look miserable!" and everyone laughed in a very shocked manner – "this guy is an arsehole". But she understood that at least I noticed. It's just the way I speak.

Another time, on a date, the lady sat opposite and she wanted to have a look at the book I was reading. And I snatched my book back. You don't do that! Afterwards I thought, "oh, that was so stupid". I just … let rip all the time. I just say what I think all the time. I don't like it. Because in this period of my life I need friends. And if you behave that way you're certainly not going to make too many friends. So, it's not great. One of the things I've lost since my brain injury, I've lost a lot of friends. But I can understand; there is nothing I can offer them apart from just myself.

I've made new friends. The sort of people I've met since my brain injury, I would never have met them and in many senses I'm glad for that. Given the sort of career I had, I could probably be earning close to 120k per year. And I would be working six days a week. But is that really life? Maybe not. OK, now I'm on benefits, but I get to see a variety of people and develop different social skills that I would never have developed.

At Ability Media I met a lady called Steph. She's got cerebral palsy, and she's wheelchair-bound, can't use her hands. Well, she can use them but they shake about; she can't control them finely. She drools on herself all the time. But when she's dressed – make up, hair, everything - she lives life to the full. There was a day I was helping her out in the computer room and I looked quite down. And she typed with her feet, "What's wrong with you? You look sad." And I thought that was the funniest thing I'd ever seen. Because to have someone that's wheelchair-bound with a serious difficulty, asking someone that, well, looks fine, "Are you OK? Are you fine?" I thought that was incredible. And I thought it was very funny. I realised I was thinking she's not capable of feeling the emotional necessity to ask about someone else's wellbeing.

10 The granularity of things

As an introvert, you're always looking at detail. You're not just seeing the overall structure but also the granularity of things – the little subtexts, the little sub-details in things. Take animé films. There's a similarity between animation and programming, which used to be my job, because they are both static elements that have dynamism at the very end of them. A lot of people go to watch a film and, well, "it wasn't interesting", they will say. I believe if you watch closely there's a lot more going on besides the actual story itself.

As a human being, it's difficult. We feel that we're very conscious of the things that we do – but the level of self-consciousness and self-awareness that we have is actually quite thin. You know, the things we do without actually thinking about them account for probably seventy per cent of what goes on in the brain. Your reaction to someone else's misfortune? You can never actually tell, unless you've been there.

As humans, we're concerned about our emotions and the emotions that other people have about us. And we sometimes fail to look at other people's experiences and what they might add to their emotions; we just concern ourselves with the emotions we get from other people. We carry a lot of emotional baggage and preconceptions with us, formed from various things that we might be conscious of or not conscious of, and they stem from very little things. And that often forms opinion. And that goes back to the granular detail of people's lives.

I think I've had this perspective from a very young age but it's become more pertinent now, since my brain injury – because now I'm a lot more in touch with the way I feel about myself. Before my head injury I dismissed the way I felt, or I did not pay too much attention to it. I had ways of dealing with life: I had my job, and I had the things I wanted to do. But now I have a lot more time to pay attention to it.

11 Circumstance

People often talk about self-esteem: this person has low self-esteem, this person has high self-esteem. It's almost meaningless in a way. I just try to do my best, and feel as good about myself as I can. And then – if you'll pardon the expression – I do not think I'm the dog's bollocks, you know. But I have a low mood. I think that's why I'm doing so many things. To keep my mind occupied and to – I think the right word is alleviate that sense of "I don't know what I'm doing". So I do voluntary work to learn new skills, and that keeps my fears at bay, I think. I think now it's about not giving up, despite the difficulties. Trying to rebuild myself and make something of myself. Find something to do with myself that I feel content with.

I don't do acceptance of circumstance. That's not the way I operate. You have to try to be more than you think you can be. When I get to my destination I will know, but I don't know the destination. Before, I thought I did but now I don't.

I think the most useful thing I've done was the marathon. That was fun but it was very hard as well. I wouldn't call it an achievement yet, until it becomes something that happens every year, and something wherein I can raise money – and let people know that people with brain injuries have a difficult time trying to get their lives back on track. Then it would be an achievement.

Plans are mostly futile. They are emotional crutches. They are not real, because we can only live now. You can plan, it's useful … but there's a futility in it. You don't know what's going to happen to you.

I used to think that life is competitive, but that's not true. Life is fatal. We all die of it. So to make it competitive is to put a hill on top of a mountain, and there is no point. It's difficult enough as it is. If you make it a competition you've missed the point.

© Headway East London/'Matthew T' (2014). All rights reserved

  • [1]. Diplopia: double vision Return to text
  • [2]. Colloid cyst in the third ventricle: a fluid-filled growth in a central cavity of the brain Return to text
  • [3]. Hydrocephalus: increased fluid pressure inside the cranium caused by the cyst Return to text
  • [4]. Craniotomy: removal of part of the cranium Return to text
  • [5]. Transcortical excision: cutting through the brain tissue in order to reach the cyst and remove it Return to text
  • [6]. The frontal lobes are the two foremost portions of the neocortex, understood to be associated with the executive functions, including concentration and self-control Return to text
  • [7]. Rehab UK was an independent vocational rehabilitation service based in Tower Hill. It closed in 2011 Return to text
  • [8]. Ability Media is a service of the charity Leonard Cheshire Disability and offers training in media and broadcasting to disabled people Return to text