Tuesday 18 December 2018

'Before, I was quite a shy person': Life after brain damage

Suffering a traumatic head injury is a terrifying ordeal, with serious implications for the way we live. Yet, strangely, there can be an upside. Here, four people talk about their experiences

Alpha Kabeja was cycling back from a job interview with MI6 on New Year’s Day 2012 when he was hit by a van and taken to hospital by ambulance. Actually, that’s not exactly right. He was taken to hospital in his private plane (the pilot parked it in one of the hospital quads). Wait, that’s not it either.

What actually happened on that cold, sunny day was that Kabeja came back from an all-night party, slung a bag of clothes over his shoulder, and cycled off to see his girlfriend. He was in a hurry, so when he realised he’d forgotten his helmet he thought, no bother. Moments from his home, he was hit by a van. The driver fled the scene, and Kabeja suffered a brain injury. The interview and the private plane? All fabricated memories produced by his brain as a way of making sense of his traumatic injury.

Our brains are miraculous and mysterious things. Everything we are and do, everything we feel and believe, is the product of electrical signals in our neural pathways. When something catastrophic happens to our brains, such as a car accident or a stroke, our personalities become rearranged, as though a burglar has rifled through our drawers. To the outsider, it may not appear anything has been stolen. But the owner of the house knows an intruder has been.

 One patient brought her family to the appointment. 'Doctor,' her relatives told him, 'she’s much nicer now than before'
In the 18th century, Franz Joseph Gall suggested that our mental functions arose from the brain. Before then, physicians believed our intellectual capacities sprang from an abstract, metaphysical soul – or, failing that, from the heart, liver, or even the spleen. Gall was banned from Austria: the idea that our eternal souls sprang from a lump of flesh was deemed un-Christian, and a threat to public morality.
Firoza Chowdhury: ‘I’m more sensitive to things now’.
Photograph: Alex Lake for the Observer
We know more about the brain today. We know that frontal lobe injuries make you short-tempered and irritable, and can lead to impulsive behaviour, such as gambling. We know that damage to the parietal lobe causes aphasia, or problems with language.

But there is still much we don’t know, or don’t want to know: although we no longer ban discussions of the brain’s functions as a threat to public morality, an old-fashioned squeamishness prevails when we’re confronted with the reality of a life-changing, but invisible, injury.

“There’s absolutely no understanding in general society, as well as in the medical profession, of brain injuries, because it’s a hidden disability,” says neurologist Dr Richard Sylvester. Since those with brain injuries often can’t advocate for themselves – or don’t realise why they need to, believing themselves to be perfectly well – the disability tends to be overlooked.

People with brain injuries can fall through the cracks of a system not set up to deal with their complex needs. Neurosurgeons operate to save their lives, but patients get discharged into the care of GPs who may not notice subtle problems in intellectual function or changes in personality. “People get lost,” says Sylvester.

Few specialist services exist. Headway East London is one charity that supports brain-injury survivors. The sound of tin drums floats through an open window from a music therapy group; in an adjacent art studio under a railway arch, a quiet young woman draws a witch in chalk. It’s a light-filled, cheerful space that’s been decorated by members (as service users are called) with brightly painted murals. Staff are on first-name terms with the survivors: there’s Carol, who’ll read your horoscope, or 80-year-old Dolores, who graffitied the back of the building. But many who sustain brain injuries will never get a chance to join a supportive community: Headway is vastly oversubscribed.

In his years as a neurologist, Sylvester has had time to contemplate what it means to be human. “Our identity isn’t fixed,” he concludes. “It’s a narrative that we depend on, which incorporates all sorts of things: our memories, which aren’t true anyway, but self-selected; our relationships with other people; our belief systems; what we do.” Every moment of every day, without even knowing it, we tap into our brain’s seams of personality, intellect and emotion. If a catastrophe befalls this rich and productive mine, the load can be transformed. “Your brain controls your emotions and all those other things that are wrapped up in your sense of self; who you are, your behaviour, thoughts and beliefs,” Sylvester says. “It’s a perfect storm.”

Understanding how trauma shapes and rewires our brains enables us to excavate at the coal face of human identity. Most of the time, it’s not a heart-warming story. “People lose stuff,” Sylvester says frankly. “And it’s pretty fundamental stuff, and they often don’t even realise it, which is one of the biggest tragedies.”

But sometimes, it’s not all bad. Survivors may become more creative or empathetic. Sylvester recalls a high-flying academic whose injury made him realise that he never really listened to other people. Another patient brought her family to the appointment. “Doctor,” her relatives told him, “she’s much nicer now than before.”

The eminent neurologist Oliver Sacks recounted one such story in his book, The Mind’s Eye. Patricia, a gregarious gallerist, lost her powers of speech, reading and writing after a brain haemorrhage. With a superb effort of will, she became an artful mime. “It’s as if the negativity has been wiped away,” her daughter Lari told Sacks. “She is much more consistent, appreciative of her life and gifts, and of other people too… She is the opposite of a victim. She actually feels that she has been blessed.”

Alpha Kabeja: ‘My brain fabricated memories to fill the gap’

 ‘When my friends came to visit, I told them about my Gulfstream G650.
I told them it was parked in one of the hospital quads.’
Photograph: Alex Lake for the Observer
After being knocked off his bicycle on 1 January 2012, Alpha Kabeja, 35, sustained a traumatic brain injury. As a result of the injury and a subdural haemorrhage, he experienced post-traumatic amnesia, sometimes known as confabulation or false memories.

The last thing I remember was the van coming towards me. Then I woke up from my coma. Because I had been in the coma for so long, my brain had fabricated memories from my subconscious to explain the gap in my recollections.

I was convinced the accident happened on the way back from a job interview at MI6. The memory was staggeringly detailed: I’d been interviewed for the position of operations assistant by the director of operations, Michael Mitchells. It went well! The job was mine.

No one challenged me. When my friends came to visit, I told them about my plane: a Gulfstream G650 that I’d been brought to the hospital in. They said: “Where’s the plane now?” I told them that it was parked in one of the hospital quads, so we went down together to see it. When it wasn’t there, I said: “I know, the pilot’s moved it.” Internally, I was thinking, “I hope the pilot hasn’t done a runner with it. That plane cost a lot of money!”

 I’m more positive now. I can’t seem to stop myself smiling
When I was in hospital, I kept worrying about my new job, so I called MI6. The receptionist asked me when I’d had my interview, and I told her: “1 January”. She said, “The building was closed that day.” I hung up and sat on the bed for a long time, analysing what the hell had just happened. I had this sinking feeling in my stomach. When I saw the psychologist, she explained that I had post-traumatic amnesia. I accepted that the memories weren’t real straight away. It was so much easier to let it all go.

In hospital, there are times you’re trying to sleep, but the nurses are being loud. I started meditating. Questions would float through my head like: “Why did this happen to me? Why did I get hit by a van on the one day I wasn’t wearing my helmet?” The meditation helped me realise there was nothing I could do to change what had happened, so I had to live with it and move on.

The best way to describe myself now is Alpha 2.0. I have changed. If anything, I’m more positive now. Sometimes I can’t seem to stop myself smiling. It’s almost involuntary. I’m only thankful for what has come from the accident. It’s weird, but I feel more creative now than before. Sometimes I’ll be writing a poem, and just get lost in it. I’m writing a book, and I just qualified for the Paralympics. I’m completely content with my life now. The other day I was meditating, and the question came to me: “If I ever saw the person who knocked me over and left the scene, would I forgive them?” The answer came easily: “Yeah.” That’s when I knew I’d moved on.

Whether a brain injury changes one’s life for the better or the worse is down to chance. The only certainty is that things will be different. A brain injury changes you.

Sam Jevon: ‘I rarely feel angry or sad now’

 ‘The driver of the car never came to see me. She’s a horrible person.’
Photograph: Alex Lake for the Observer
Sam Jevon, 50, was a passenger in a car that came off the road in June 2006. She sustained a traumatic brain injury which resulted in a subdural haematoma and a left temporal contrecoup injury.

At the time of my injury, I was not in a good place. I was drinking too much. The doctor said: “If you keep drinking this much, you’ll end up with a dodgy liver.” I kept drinking anyway. My friends would have described me as mad and very loud. I would fight any man, I didn’t care how big they were. I wasn’t frightened of anyone.

The accident has done me a favour. I have a better life now. I am less stressed. The only thing I miss is being in my darts team. I used to be really good at darts.

 I wasn’t artistic at all. Now I can’t believe how well I can draw
When I was in hospital, I didn’t talk to anyone for a long time. I’d sit in the ward and people would bring me things to play music on, but I wasn’t interested. The driver of the car never came to visit me. She’s a horrible person.

I don’t see things how other people do. It’s difficult for me to perceive other people’s feelings. I often have to repeat myself, because people don’t understand what I’m saying. Sometimes it takes a long time to find the word I want. I don’t mind. It’s just how I am.

What’s got me through all this is being a very positive person. Having a sense of humour helps, too. I wasn’t a positive person before the accident, which is odd. I think the injury blunted my emotions, particularly anger and sadness. I very rarely feel particularly angry or sad now.

Before my injury, I wasn’t artistic at all. I could only draw matchstick people. Now, I can draw pictures with lots of detail. You have to be very patient to do art like that. I think the part of my brain that was affected by the injury allows me to concentrate a lot more. Sometimes I can’t believe how well I can draw. I’d like to do a big exhibition.

I don’t really think much about how my life used to be. There’s no good in looking back. Best to look forward. It’s not about how you used to be. It’s about how you are now.

Firoza Chowdhury: ‘I’m more sensitive to things now’
Firoza Chowdhury, 39, collapsed with a thunderclap headache at home on 2 July 2007, after sustaining a left parietal haemorrhage from a pre-existing congenital condition.

I was brushing my teeth with my head in the basin. When I straightened up there was this crazy pain all over my head. I thought, what the hell is this? It felt like my brain had been stabbed with a knife.

I collapsed on the floor. I couldn’t feel my body. Voices were all muffled, as if I was underwater. Then I was in the ambulance, vomiting. When they looked at my eyes, the pupils were different sizes. That’s how they knew something was seriously wrong.

My stroke was caused by a condition called an arteriovenous malformation. The blood vessels in my brain weren’t formed properly. It’s something someone can live with, and nothing ever happens to them. Whether it happens or not, you just cannot say.

At the time of my injury, I worked in publishing. My job was stressful and deadline-driven. A job like that relies on what doctors call executive functions: the skills you need to concentrate, work and analyse. There’s no way I’d be able to do it now. I suffer a lot from fatigue. I can’t concentrate for long periods of time, or process information. Not being as independent as I would like is also hugely frustrating. If I have a friend over on a Saturday evening and stay up late enjoying myself, I will still be recovering from it on Monday. I call it fatigue flu: you feel really exhausted and low. It’s upsetting, because you’ll have a nice time, but then the aftermath is so crap.

I’d love more than anything to be able to concentrate for a long period of time, or go out and about, and not have to worry about how I’ll feel tomorrow. To feel healthy again would be so wonderful.

Before, I used to be quite a shy person. Now, I’m less filtered. I’m more sensitive to things now; I have more anger as well. I’m more likely to perceive an offhand comment in a negative way. I’m not sure why.

I have a lot of anxiety around public transport. Before my injury, I wouldn’t think twice about being in a crowded tube. But now it’s intimidating, especially when there are people bashing into you.

I’m not good at telling people I’ve had a brain injury. I want to be treated the same as anyone else. I worry about how people are going to perceive me. I don’t want them to think there’s something wrong with me.

It hasn’t all been negative. There has been positives as well. I feel negativity when the fatigue gets to me. But when I don’t feel that way, I remember that, yes, a lot of things have changed and my life is different, but doors have opened at the same time. I am more creative now, and I’m thinking of studying dressmaking. Physically, I am improving. I was able to run after my nephew the other day in our garden – I’d never have been able to do that before.

Since the brain injury, I have learned about life: how hard it is, and how things can change. One minute you’re going about your business, and then everything is different. But I’ve learned how to survive.

Lina Lacides: ‘The only thing I can’t do is read’

 ‘My daughters came looking for me and found me on the bathroom floor’.
Photograph: Alex Lake for the Observer
Lina Lacides, 53, from Guadeloupe, suffered a brain injury as a result of a cerebral bleed on 29 December 2003.

I was in Burger King with my daughters. I went to the toilet and never came back. My daughters came looking for me and found me on the bathroom floor. I was completely, covered in blood. My brain had simply exploded and there was blood everywhere.

After spending a year in hospital, you get really fed up. It’s like prison. I kept asking the doctors when I could go home, and they kept saying: “Not yet.” So finally I ran away. Everyone panicked! In the end they sent a helicopter to look for me. It worked, though. The week after my escape, they let me go home. I think they realised I’d had enough.

 ‘After a year in hospital I ran away. They sent a helicopter to look for me’
Before my accident, I was always busy. I worked all the time. It was too much for my brain. Now, I take it easy. When I realised I couldn’t read any more, I cried. I thought: “I’m nothing in this life if I can’t read.” Everything you need to do, you need to be able to read. But then I thought, some people go blind or can’t speak after a brain injury. The only thing I can’t do now is read. So I try not to be negative.

I still have the mother instinct with my daughters. I know what’s good for them, and what’s not. They can’t say to me, “Mum, I’m going to a party.” I’ll tell them, “No you’re not. Go upstairs and read a book.”

I’m embarrassed to tell people I can’t read. The other day I went to a car showroom, and I asked the assistant to read the prices to me. I told them that I had left my glasses at home. But it’s OK. Imagine being depressed about something like that. There’s no point. Being negative can push you to suicide. I don’t want to kill myself!

After my injury, I thought I wouldn’t be able to cook again, but I knew straight away how to make rice and peas and curry chicken, because it’s my food. If I’m trying something new, I force my brain to remember. I still know how things should taste. I know not to put sugar in a curry, but garlic, or spice.

I apply the same logic to my life as I do with my cooking. You won’t be able to do something at first, but you can learn it by trying. It’s the same with my food. Maybe I put too much salt in it last time, so I’ll use less salt today.

I live my life day by day. When you plan things too much, they don’t work out. And I’m positive. There are always people worse off than you.

(Source: The Guardian)

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