When I was younger, I didn't think a lot - I just used to do. I was very sporty. I was never academic at school because I would never sit down. I preferred mucking around, to be fair.
1 'What can I do?'
I left school in 1994 when I was sixteen. I'd done my work experience at the golf course and I knew everyone there so I played a lot of golf for six months. Then I realised I had to get a job so I thought 'what can I do?'
My uncle's friend got me a job working for a company in Dagenham. They had a contract with a pharmaceuticals company that made tablets and things like that – it was like a massive village in there. It was the size of eight football pitches, it had its own fire service and ambulance. I worked on a dustcart with a man called Sid and he had the best laugh in the world, it was really annoying, like ' ahhh ahhh ahhh' –it was like a bird. We would make him laugh in front of people because it was just hilarious.
After a year of doing that I thought 'I can't be working on a dustcart, this is not what life's about,' so I started using my brain a bit and I went back to college. I did basic engineering and electronic graphics using Apple Macs. I've always been quite good at that side of things; I enjoyed CDT[1] at school. At the same time I went back to the company in Dagenham and got moved on to the building side as a labourer.
Then a friend offered me a job as an electrician's mate, doing electrical installation. I absolutely loved it straight away. The company was based in Essex but the job was in St James' Park. It was like I'd won the lottery. Down in Dagenham it was a damp, depressing feeling and this was a different world. We had to walk past Scotland Yard on the way to our job and it was right next door to the Channel 4 offices. I'm just dropping names here, I don't really know why. It was just such a nice environment to be in. Opposite the office block we were working on there was a school and you would see them all turning up in their school uniform; a lot of them would be on time. It was just nice to see it done correctly.
2 An adventure
The money was unbelievable compared to what I used to get. I was there about a year and a half and I got my wages up to £1,400 a week sometimes. So then I was working really long hours because you'd get forty hours to lay the tray, then lay the cable in the tray and then another forty hours to wire it and another forty hours to fix it. It was good because I like targets. It wasn't like work, it was more of an adventure.
But then, with a big high, there's always a low. A lot of electricians like a drink. We'll go to work, have breakfast, we'll have a beer after breakfast - no, this is not a great advert for electricians, is it? You would try and rush to get your job done by three o'clock so you can all get in the pub. There was a real family feel, which I loved.
It was quite easy to get hold of cocaine in the pubs. You'd be so tired because you had to leave home at half four in the morning. I was studying at the same time to get the grade and I'd go to college at night so that's when the cocaine really helped me. It was just so widely available and as soon as you had a bit you'd be so lively and it would give you the burst of energy you needed.
By this time I was confident socially and I could do what I wanted. I thought everything was going well but obviously it wasn't. Before I knew it I was addicted to cocaine. I couldn't get out of it.
When I had the stroke I'd been away for the weekend with a friend and his girlfriend. I was taking cocaine, but I didn't admit it to them. I came home late on the Sunday night and went straight to bed.
Mum had a migraine on the Monday so she wasn't at work. She checked in on me in the morning and I was just sleeping, but she checked back later, in the afternoon, and she knew there was something wrong with me. I was semi-conscious, rolling my eyes and moving my arms. From then on, I only remember patches of what happened. The good bits or the funny bits. I think your brain automatically blocks out the horrific parts. So there's bits and pieces I remember from going in the ambulance, going on to my local hospital.
Mum was with me that night in A and E. My dad came the next day and my cousin came and stayed with my mum for a week. I was in the critical care ward for three weeks. I think it was Christmas Day 2001 I got moved to a ward.
Discharge Report
July 2003
William was admitted to hospital on 3 December 2001, suffering from cocaine induced encephalopathy[2]. He had a Glasgow Coma Scale of 8/15 and remained unconscious for two weeks.
I couldn't walk or talk or eat so I had a thing up my nose and a PEG[3] feed in my belly. I pulled it out twice.
You've gone back to being a baby. You're just learning to walk and talk and breathe.
This is me with my dad.
3 Beginning again
I spent six months in the local rehab unit. The left side of my body was affected so at first I couldn't even stand. My throat muscles were weak so I couldn't really swallow liquids or control my saliva. But that's hospital, isn't it? You're beginning life again. I was eating a liquidised diet through the PEG feed in my stomach and my friends used to wind me up, because every time they saw it get pumped in they'd say "oh, look at that chicken. Look at that crispy duck". Obviously I'd get peed off with them so I'd think 'shut up' but I couldn't express that. I was laughing but I couldn't really laugh so I would sort of squeal. My voice box wasn't working so I sounded like a hyena.
There were all old people around me because generally strokes happen to older people. So they put me in a separate bedroom. The World Cup was on in June so patients, doctors, nurses used to come in and watch the football with me. It was nice because it was like family. A friend of mine used to book days off work and come and see me. He was fantastic - he used to push me to physio in the wheelchair, he'd make me laugh. He mocked me but I let him mock me because he was one of my true friends.
I got to know some of the patients and it was really good for me because it made me feel like I was back to life. There was this old boy, he really cracked me up. He could hardly walk or talk or breathe but he'd go into the toilet and have a cigarette. He had two women on the go. Seriously, he's in hospital and has two women and they come in at different times. I just thought 'this is ridiculous, like a comedy. How can you be a player in that situation?'
I would always have a bit of time for older people because I love hearing their stories. At work I used to hang around with the old boys. Half their stories were probably lies but they were interesting. I like speaking to knowledgeable people, I suppose. That's what I want to be like. I want to be interesting, I don't want to be one of those people that you think 'oh get out the way'.
The team at my local hospital got me up to a basic level and on my feet. The OT, physio and speech therapist were really good with me. The speech therapist did the paperwork to get me into the residential rehab centre. My cousin helped as well. I'm very grateful to them.
I loved the residential rehab, I thought it was brilliant. A new world opened up for me. It was run like a college or youth club. They'd take you swimming, they'd take you on outings. We were going to Maths and English, Art Therapy and Physiotherapy. I really enjoyed having the structure to my day. I actually learned to read and write better, because I had time to sit down and do things whereas at school I would always be rushing off.
I learnt to cook, which was great because I'd never cooked before and I love cooking now. They'd make you cook for three or four of you and you had to work out the ingredients and buy them from the supermarket. You wouldn't believe how fatigued you can get just from that because your fitness and energy's so bad. I would literally come back from the supermarket and just sleep for an hour.
You can go through all the therapy you want but at the end of the day you have to do it yourself. They can't do it for you. You'd move over to the bungalow so you're sort of self-sufficient and you're doing everything yourself which was great but then of course you've got plenty of time to get everything done, when you would normally be at work.
Discharge Report
July 2003
Cognitive difficulties
William had difficulty sustaining, switching and dividing his attention between tasks. William had an anterograde memory deficit (difficulty remembering new information after his brain injury) and also visual and auditory memory deficits. William displayed deficits in executive functioning. His ability to plan, think flexibly, sequence and make decisions was impaired. He was also found to be impulsive at times.
A Support Worker has been commissioned by William's Care Manager in Social Services, to provide him with daily support as required, and to help him with tasks such as enrolling at college and ensuring he receives the benefits to which he is entitled.
Unfortunately, after spending all that money to make me independent, the system failed when I left the residential centre. I had a support worker but only for about eight weeks. Obviously it's quite difficult because there's so many different sections to it: housing, physio, social services. But the thing is, when one step doesn't go on to the next step, or the timing isn't right, everything falters. Something along the chain went wrong and I was just left defenceless.
4 Tears and beers
Discharge report, brain injury specialist rehab centre
William has come to see the value of his training in independent living skills and has therefore pursued making an application for independent housing in his local borough. Unfortunately, the waiting list for accommodation via the regular Housing Department is 4-5 years long.
Basically, what happened was that a social worker told me the only way I can get a place to live is to go homeless, which I did. My mum had to declare me homeless and the social worker took me to this hostel where there's all single parents and drunks. It was a scary moment. This one bloke, I will never forget him. He looked like Onslow from Keeping Up Appearances. He had sandals on with long toenails with dirt under them; fingernails the same. And he was in charge of the hostel. My mum was with me and when she left I sat down and cried.
I went to the off licence to buy beer to escape from this place, but I basically made it worse! Tears and beers do not mix.
Just the wrong environment for me to be in. The injury happened because of drink and drugs and now I'm around it again.
After six weeks I went to look at a council bedsit and it was horrible. It was damp and too small even for a hobbit. The bathroom was all dirt and limescale and then there was a little kitchen to the side that was 1950s-dated so I said "I don't want it." The social worker told me "you're at the top of the queue at the minute. If you don't take this property you'll go down the priority list and you won't get offered nothing." So I took it and I decorated, I put some blinds up with some friends.
Basically they're saying 'beggars can't be choosers. Welcome to the real world.'
I was very depressed in there because I was like a hermit and my environment was so bad. It was the year 2003 but it felt like I was in Open All Hours. The shower was like a watering can and everything was all rusty and mouldy so I cleaned it up as best I could with my one arm but you can't make something great that's just wrong. I tried to get things repaired but the council send you round to different departments and you go round in circles. They don't realise they're dealing with someone's quality of life.
The whole experience in that place was just rotten and I was there for eight years. I had no prospects. I stayed with my mum most of the time. I was very shy. I mean, I was too scared to get on the bus. At that time my mobility and my speech was much worse than now and I walked with a little stick like Yoda.
Things changed when I saw an advert for a neuro-linguistic programming course. My mum paid for me to go. It was a ten day course and I loved it. I went from being a recluse to actually being sociable. There were a lot of business people there, people with a positive attitude. That opened my eyes to a new life, I think. It made me realise that I could change my environment and I became determined to move out of the bedsit.
I must have bid on council properties about forty or fifty times. You never get anywhere because the only way you move on the council is if you have a medical report. So you have to start speaking to people and find out how the system works. After eight years of being stuck there, as soon as I got a doctor's note I moved within five days.
5 Gym
When I was in the bedsit, the gym became my life. I got into it because the shower wasn't working and I could go to the gym every day to take a shower. I started to work out a lot because I treated it as my job. Instead of just being at home depressed, I went to the gym.
First I went to the local YMCA for a stroke rehab exercise group, but I left after six weeks. I didn't enjoy it that much because it was set up for old people, but I did get involved there later. Then I joined a gym and my mum helped me pay the fees. The gym instructor, Phil the fireman, started training me and became a friend as well. I looked up to him, he was quite a good fella. As I used to be very fit before, I had loads of body fat on me from being in hospital. When I started to burn off the fat, muscle started coming through and I was like 'hello, who is this?!'
I kept training because it helped my mobility and my mental state. It kept me a bit more positive, but the problem was, it took over my life! You do need to be careful as well. When you are doing weights you are shortening your muscles and I need to lengthen my muscles on my weak side, otherwise they get really tense. In one way it was helping me but in another way it wasn't. So I have learnt to cool down and stretch after training and that puts your muscles back to homeostasis.
Over the years I've got better at relaxing my arm and my leg and using my muscles to control my movement, but I have to work out nearly every day just to maintain the basics. Wherever I am, I stretch my left side - on buses, trains, all the time. It's a work in progress.
As soon as I pick something up with my left hand, it will just go stiff. It's known as 'spasticity.' My brain can send the signal but doesn't know how to switch it off, and then I'm fighting it. I don't use my left hand much in front of other people as I feel so conscious that it looks like a claw.
I want to get back into sport because I am so competitive. I used to play golf, tennis, football. Even playing tiddlywinks I want to win, do you know what I mean? I have still got this competitive side that is eating away at me, so I thought 'what can I do?' I have tried to go to the Paralympic talent days but if you have a brain injury they don't know where to put you. Now I understand cerebral palsy is the bracket that I would go into but back then I did not have a clue – it's taken me years to work it out. It's still hard to work out who's running the training days.
I went to Loughborough for a weekend to do the triathlon talent day but after the brain injury I did not use my left arm that much so I couldn't really swim. And I didn't like the way I ran - I looked like I was drunk - so I never ran in public.
I would love to do more sport but it's on hold at the moment because of my education. The travelling is too much on top of everything else.
This is me in Orlando, Florida, at Universal Studios. If you read the sign, ironically it says ‘Which do you think is my best side?’ My left side is facing it! That was before my injury.
6 The system
Ever since I got out of the bedsit, I've been trying to re-start my life, go back to college and get a job. I'm trying to better myself but it's just so stressful.
When I came out of rehab, I said to the social worker "I don't want to rely on benefits, I want to go back to work." I was so adamant that I would achieve it. She said "well, you have to claim benefits, you can't live otherwise." It made me feel like I couldn't do better and that really affected me at the time. But I understand where she was coming from now because I know the benefits system.
I signed up to a back to work programme through the Job Centre and started doing a job where I worked a few hours as a one-armed waiter in a sushi bar. That was quite funny because my walking and talking was not very good so you couldn't understand me that well. The more tired I get, the more you can see my disabilities because my speech and concentration goes. If I was there two days in a row, my brain couldn't activate because of the fatigue.
Taking the job meant I had to give up my benefits and my rent and council tax went to full price so I had to earn £300 a week to pay everything off. The job didn't work out and I'd only done a few hours' work in a month so I'd gathered up over a thousand pounds of debt. I'm still paying it off now.
I've tried getting back into work through volunteering at the gym. I like training people and helping out and I'm good at it. I qualified as a level 2 gym instructor in 2006 and I got to know the manager at a gym in Essex. We got on alright and she said "I will give you a job here, if you can prove it to me." I went on a trial period, coming in and training people and then she said "fine, you have the job."
I started to work there for a couple of months but I couldn't cope because of the fatigue – both physical and emotional. I would literally do my shift and then go home and sleep for hours. I had no time for anything else, even washing or cooking. So my quality of life, which funnily enough was meant to get better through working, has just gone downhill. After a few months I went "no, I just cannot handle this." So I gave that job up.
What I know now is that you need more support. If you work hard, people will just let you carry on. You have to inform them about the fatigue, but at the time I never. You need a really understanding employer. And you need your own systems – it's an on-going problem.
80% of the time I'm fine but 20% of the time I'm not. My symptoms come out when I'm feeling weak. The other day I had sunstroke, and all my reactions were affected – I went back to being really disabled. I need to be able to work around things like that, but most jobs are not set up that way. They're not going to work with you to create your own hours.
I train some guys with brain injuries at the YMCA. It is really nice because I can give them my knowledge and what I've learnt. Life is not all about money but at the end of the day obviously I would love to have a paying job.
7 A rollercoaster
I used to walk with my head down and I would not say boo to a goose, really. It's only in the last few years that I have started to perk up a bit.
When it comes to confidence, I've learned you need to fake it till you make it, but in this system, having a positive attitude about what I can do only makes it harder for me.
Each time I try to go back to work and then have to stop, I go through the process of getting benefits again. Each time, it takes a little bit out of you, mentally, because you want to be positive but you have to go over the things you can't do.
You have to go back to the medical staff and the therapists and they basically aid you with a recommendation letter and write these assessments about you.
The medical letters and reports help, but they affect your confidence. Yes, I have some problems, but I can cope with them if I'm in control of the way I live my life. But that will never happen under the way this system works.
Diary, August 2014
Went to the ESA[4] meeting with my dad. When I came out of the meeting I knew I was going to lose my benefits. If you don't have someone with you with a title (medical, social worker background) they just ignore what you say so straight away I knew it was going to be very hard.
Diary, August 2014
The DWP[5] phoned me up and informed me on Friday 22nd August that I'm fit for work and I'm being put on Jobseekers'[6].
Seriously, there's not a chance for someone in my position. I'm a hard worker so why am I treated like rubbish? When I lose my benefits it turns my life upside down, I get in debt, cannot afford food, the basics. No wonder my mental state is like a rollercoaster.
8 Shot to bits
Meeting other people through Headway who have suffered brain injuries has been very insightful, seeing how they cope. It is always down to the same thing: they don't get what they want and they get frustrated and they clench up and their speech goes because they're upset, and that is basically the same with me. My emotions are shot to bits because I want to go back to work but I can't afford to.
I believe this is where the problem lies with decision-making. If there is an emotion attached to a decision, you can't make it because your brain is overloaded.
I've heard a lot of so-called experts talking about the effects of brain injury, but they never mention the frustration you have with your situation and how it affects everything. You can be late for something because you took too long doing up your shirt buttons - silly things like that – and the frustration stops you thinking clearly.
9 The right direction
In 2013 I started seeing a specialist hospital outreach team for brain injury survivors. They work with you on different goals, so you might see a physiotherapist or someone who helps you get back to college. They've helped me to organise myself and do day-to-day planning. They've really pushed me in the right direction. The thing is, they work with you for twelve weeks and then they write a report and you're back on your own. You can apply again but only after a year, because it's funded by the borough you live in. You get help, but you don't always get help at the time you need it.
I feel I've got a Jekyll and Hyde in my head: at times I get frustrated with the type of things the therapists want you to work on, because they're not living with the injury. At first I didn't understand the point of the goals they want to set but now I do. For example, they told me about mindfulness techniques. I used to laugh, but now I can see that it works. It's helped me to take control of my life.The only way I can see of changing my situation is through more knowledge. I've realised education has to come before everything. I'm working towards getting my Maths and English GCSE so I can study at University. It's a slow process. I've put my whole life on hold for it.
10 The real thing
When you start a conversation with "I've had a stroke," everyone feels sorry for you. As soon as you mention the drugs, they think, 'well, it was your own fault'. I take responsibility for my actions. But if you keep blaming yourself you'll never move forwards. I understand that now.
This injury, this situation, has made me grow up so quickly. It is an experience I would not have wanted but it has made me a more complete person. I have become very wise for a young lad (I call myself young still).
After I came out of rehab I used to go out with my old school friends. They'd put me in a cab and send me home because I couldn't stand up, I was a right wreck. I did that for about two or three months and I realised what a tit I was. I was embarrassing myself.
Alcohol's a no-go really. There was one trip to Spain with friends, a year after I came out of rehab. We'd been out at a club and I wanted to get a taxi back to the hotel, but my friend made me walk back there for a laugh. I was drunk, which made my walking even worse and my new shoe was completely shredded down one side. My so-called friend was filming the whole thing on a video camera.
That's how we were at school but I've got rid of that attitude. I don't want that any more. I want to be around responsible people with a positive attitude.
A lot of my friends have been really good but then they've got their own lives so you can't expect them to help all the time. If you've been in hospital, you've lost a lot of life experience. I did lose some good friends because it was hard to adjust. Everyone has moved on and I haven't.
At the end of the day I think it would be nice to get a career outside of the gym. I would like to move out of the deprived area where I live. In an affluent area you feel alive. The people you meet have got energy. When you live in a deprived area, the standard of living is low in lots of different ways. You have to travel a long way to get anywhere. You get on the bus and it's packed, and people are arguing about whose bag is in the way because they're basically angry and frustrated.
I just want to be comfortable and content. That's a sign of age, isn't it? Well, I say that, but I'm not someone who can sit back and do nothing. I want to achieve things. I want to climb Everest!
I think I just want the same things everybody does. I want to earn enough to support a family - I have always wanted to have kids. I want to own my own house and have a career. I don't want to be in this system where you get a taster of things, through work schemes and volunteer placements.
A taster's not enough. I want the real thing.
Editor's note: thanks to Alex Pink for his photographs. You can see more of his photo essay at Spitalfields Life.
