Facing it head on: what does a traumatic brain injury feel like?

Each year across Britain some 350,000 people are admitted to hospital with an acquired brain injury. The results can be life changing with 500,000 people in the UK currently suffering long term disabilities as a result.

Four years ago the charity Headway East London started delving into the minds of survivors of major trauma. Their stories shed fascinating light on the shocking and surprising nature of brain injuries, and how little we still understand.

By Joe Shute and Charlotte Lytton, Monday 9th May 2016

Brian Morris, 56

Brian pictured a few weeks before his accident

Brian pictured a few weeks before his accident

Time stands still for me when I look at this picture. The last thing I remember is hitting the side of a lorry as I rode my motorbike down from Hackney Marshes – everything changed after that.

My childhood memories don’t exist, they really don’t.

I can’t remember anything: from the age of eight upwards it’s patchy, but below that, nothing at all. It’s like a jigsaw, but the pieces don’t fit properly, which is just horrible.

After I got injured at the age of 16, the person I’d been before disappeared - even my friends at the time said it was like talking to a different person, and that they almost didn’t recognise me. My friend who was with me when I got hit found it really hard to cope with, and the relationship we had before disappeared.

I had physiotherapy for a couple of years, and was in a wheelchair for about a year. But I thought, “I’m not having this”: I was determined to get up and walk again, even though I had to relearn how to do it. After a year I was back on my feet, and I walk with a stick now: I have arthritis in my joints because of breaking so many bones. I had to learn to speak again, too, as part of my speech pattern was gone. That was really hard – it felt like I was speaking gobbledygook. My tongue didn't want to move and would go one way while my brain went the other.

I went back to work after a year of rehab, but could only manage three days a week as I was so tired. At that time I was sleeping rough, and I did some bad things, things I regret.

I used to drink one or two bottles of vodka a day because it was a way of coping with the pain – you had to just carry on, or there'd be no money.

But I came through it when I met my wife – we married nine weeks after being introduced, and have been together for 36 years. She taught me how to read and write, which really helped with the stutter I had developed, and when my daughter was born, I would read alongside her. We were both learning at the same time, reading the same things.

I’m more confident now than I was, mostly due to drawing, which I’ve done as far back as I can remember. Art means everything to me, and after I started a foundation course in art and design, I passed two years later with flying colours. That led me to get my BA with honours in Fine Art at London Metropolitan University, where I also got the top prize for screen-printing.

If anything, having a brain injury makes a person stronger: we’ve got more zest for life, value and grasp it more. I know I take life more seriously now, and want to keep grabbing it with both hands.

Sam Jevon, 48

When I was younger everything happened quickly. I met my husband-to-be when I was 18 and we married two years later. I had my daughter, Jessica, at 21 – the same age my mother had me - and was 23 when I had my son, Spencer.

Spencer has Asperger's Syndrome and he was a nightmare when he was little. His dad left when he was six months old because he couldn’t handle him. Bringing Spencer up was the biggest challenge in my life. I don’t think I slept for four years.

I never really got to go out that much. So 10 years ago this June when I was offered a lift to go shopping I was really excited. I never got to go shopping. It was a sunny day and I sat in the passenger seat with the window open and my seatbelt unbuckled.

Apparently the person who went into the back of us had only been driving for a week. Our car rolled over and I was thrown out of the window. The driver only suffered a broken shoulder. I came out of it far worse.

I was taken to the Royal Free Hospital and was in a coma for a couple of months. I had a bolt coming out of my head. Because of the pressure, they had to take a piece of my skull out. I've got a titanium plate there now - it covers most of my head.

After my injury my dad was talking to my doctor about whether I'd make it. The doctor said "If anyone will, she will." I've always been determined.

When I woke up I had forgotten a lot; how to cook, how to measure out ingredients, that sort of thing. I really suffered with balance and vision.

I was sent home after eight months on Jessica’s 18th birthday. It was hard for my family and my son in particular. For a long time we couldn't speak about it together.

I think my children have coped very well. Jessica studied languages. She's a translator at the moment and she's in three orchestras playing the viola and clarinet. Spencer is 23 and really excellent with computers. He took his first degree at King's College in London and his masters in Sheffield.

I wouldn't describe myself as a disabled person at all, just different in the way I look and walk.

My voice is different, and my eyes - one is bigger than the other. Some people think I had a stroke because of the way I walk. I don't mind telling people what happened to me.

The accident has affected my family worse because I am not the same person any more. I used to help them out with filling forms and can't do that now. My sister is nine years younger and I was like a mum to her. That's definitely changed.

Every time she had a problem she could phone me up and talk to me. She can't now. I can't give advice the way I used to. Before the accident I used to say what I felt but I can't say so much now.

My personality has changed. I think I am very mellow now and more outgoing. I put myself out there and I don't care what people think.

I only have one friend that I've known from before. All the others disappeared.

That is how it is after an injury - you find out who your friends are. It's their loss.

One of Brian's artworks

Sarah McAllister, 75, and her daughter Alix, 43

Sarah: I rarely set my alarm nowadays. I don’t have many things that I need to keep time for, and I’m not brilliantly good at doing so. I often wonder if I am different now from how I would be if I hadn’t had a head injury – I’ve agreed to meet people on several occasions and then got carried away with something else entirely. I know that can be annoying for other people.

Having recently qualified to teach in Rwanda, I was on the way back from my leaving party when a stranger grabbed my bag and pushed me hard, causing me to bash my head on the curb.

I was knocked unconscious, and had an operation that night.

Alix: A few days after her first surgery, mum had a second life-saving operation where they removed part of her left frontal lobe and cut a hole in her skull. We were told that she could lose language, or not recognise us.

She remained in a coma for a long time, and doctors had written her off: it’s all probability and precedent, and they said no-one in this position for this long could make a recovery. Phrases like Permanent Vegetative State were used. We were told they had referred her to Putney - that’s the neurological hospital where people who don’t recover go – but pleaded with them to let her stay where she was.

We believed that she was in there somewhere, and weren’t ready to confront this future the doctors were painting.

That was when she first moved a finger in her right hand; soon after, she opened her eyes. Next she moved her hand enough to use a pen, writing: ‘I’m OK.’

That note said so much to us. She was saying she was conscious and alive, and had chosen the most concise and efficient way to communicate - this was evidence of a higher faculty at work. It was typical of my mother to be concerned about us and say something to make us feel better. She wasn’t bloody OK. She was semi-paralysed, couldn’t speak, didn’t know what was going on, but she still wanted to reassure us.

S: Slowly, over the next four months in that hospital, I began to recover. The skills of the nurses, as well as those of my family and friends, who visited and helped, gave me everything I needed. Only through that help and care can you survive.

A: All the medical staff treated her case like some miracle - doctors and nurses came to visit to see for themselves, as if they didn’t believe it. She was conscious but had post-traumatic amnesia; her memory lasted about 15 minutes, so she’d need it all explained again and again.

I remember nurses writing her notes - she’d take the paper to reply, but first, correct their spelling and grammar. When she corrected ‘subdural haematoma’, we knew that the fastidious, knowledgeable Sarah was in there.

For years after, when we went for outpatient appointments, staff would come and say hello and remark on how extraordinary mum’s recovery was, and tell colleagues who didn’t know her: “This is that lady who we thought… the one I told you about.”

But the first thing that happens in a situation like mum’s is a kind of inversion. I was 30 years old and suddenly the parent: I’ll always remember how she looked at me in the early stages, completely without flinching, like a newborn baby.

It was so sudden, so total - I had to feed her, change her clothes, take her to the toilet - it was very primal.

She was like a baby that could talk.

It was odd on a personal level that I became a mother about two years after her injury. Mum and Ruben shared something quite strange: he was her first grandchild and she was just strong enough to care for him, yet at the same time, it was like she was growing up, too. It was extraordinarily beautiful watching them together. She could enter into his child’s world in a way that I almost felt envious of - I would go to the shops and come back and she would have a tea-cosy on her head and they would be totally in their own zone together. They still have this wonderful friendship, and we’ve got to a place where she can take her role in the family again and be Ruben’s granny.

I have grieved a little bit for that part of mum that has been lost.

But I have also had to let go of that, and accept who she is now.

S: Having a traumatic brain injury has helped me: you realise that in thirty seconds your life can change forever, and that it’s just the luck of the draw.

But I’ve also learned not to be scared of talking about death - there’s no reason to shy away from it. It just is.

Sarah's book of travels

Alpha Kabeja, 33

Specific details are difficult to recall. Some of my memories of childhood have merged and fused together. When you have a brain injury, you're usually just dealing with the moment, not really straying back into the past.

I was born in Uganda in 1982 but left when I was young. I needed heart surgery, so we came to Liverpool. Just me, my mum, and my sister.

The operation was a valve repair. I was too young to understand that – I thought I'd had a heart transplant from this other Italian kid who was on the same ward. For a while I would tell people: "I have an Italian heart."

When I left school, I worked as a chef for five years while I went to college to study sociology. After that I worked at sea in the cargo business then got a job in King’s College as an electrician.

It was New Year’s Day in 2012 and I was on my way to see my girlfriend at that time. I was riding my bike through Camden. The last thing I remember was seeing this van.

The driver never stopped. Just left me lying in the street.

When I woke up I’d been in a coma for three weeks. I didn’t know what had happened. I had these fabricated memories – I think they’re called ‘post-traumatic amnesia memories’ – but I thought they were real.

I woke up believing I was expecting twins with my girlfriend even though she wasn’t even pregnant. I also was convinced I had sent flowers to her door in France, and talked with her on Skype, and had a meal with her over a laptop.

And then was the fact that I believed when the accident happened I was on my way back from a job interview for director of operations at MI5 which I had subsequently been offered.

If you’ve been in a coma, there’s a gap in your mind which your subconscious fills with memories it creates.

You wouldn't believe the damage control I had to do when I realised I’d been wrong about it all. Everybody I told – my best friends, my family – I suppose they knew something wasn't right, but because I was in such a fragile state, they didn’t want to confront me.

I still remember the disappointment of eventually finding out that they were not real. It made me question everything. Even to this day if I know something’s true, I never let myself get too happy, in case it goes wrong. I know it’s there, and it’s real, but I still hold myself back.

Even before my accident I knew that anger could not solve anything.

Anger eats away at your immune system. So after the accident I wasn’t angry – but I was disappointed that this person, whoever it was, didn’t have a shred of humanity in him. I can say, hand on my heart, I never shed a tear. If anything, I felt blessed to survive.

The challenges I face now are about getting back into work. I’ve got neurological weakness in my left hand and foot. My thinking is slower and I get distracted. I start to read, I look away, and the moment I come back to the page I’ve lost my place. I find it hard to find my way around new environments. What kind of job would I be able to do?

My girlfriend and I have been together for a year-and-a-half now. When I was in hospital I was quite worried – what kind of relationship could I have? She knew all about the injury so I didn't have to explain everything. I’m still the same as I always was when it comes to relationships. I’m just enjoying every little moment more than I was before.

The other positive thing is that I now laugh a lot. I’m always smiling. It’s not like I’m smiling because I want to – I don’t know what the right word is for it. I get overwhelmed with this feeling of butterflies in my stomach.

We don't understand how the brain works. I don't think we fully understand ourselves.

Alpha, Sam, Brian, Sarah and Alix are part of Who Are You Now? - a project telling the life stories of brain-injury survivors by charity Headway East London. To find out more about brain injury visit Headway UK.

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