Brain injury: My life, interrupted

Ellie Johnson was returning from a university ball when a horrific car accident changed everything. She describes the long road back to a normal life

(JOHN LAWRENCE)

Nobody knows exactly what happened, or how. But, just as we were joining the motorway – a friend driving, and me in the passenger seat – our car started to spin. In the slow lane, a lorry loomed. There was no way it could avoid us. In the collision, we were rolled right on to our roof, and the lorry crashed into the central reservation, which hit another car. No one else was injured – except me.

It was late evening and we were returning from the university summer ball. I had just finished doing a year's work placement as a biochemistry lab technician, and had decided to go to the ball to catch up with friends, to have fun. In the event, I don't remember much of the ball at all.

The first person on the scene of the accident was an off-duty policeman. He knew exactly what to do, and I was rushed straight to hospital. Though I've never met any of the others involved in the accident, I've sent him a card to say thank you. When I arrived, the doctors immediately placed me in an induced coma to reduce the swelling on my brain. I was out for six days and took another three to wake up. It's not like the films, where you're suddenly awake. This was a very slow process. My dad says he thinks back to seeing me with all those tubes and he still can't believe it.

I can't remember anything about waking up – and very little from the next three weeks. I hadn't forgotten who people were, but I'd forget conversations. I would ask the same questions over and over and over again. It was almost as though I got stuck on something and needed to know the answer. I had post-traumatic amnesia, which someone described as being like having islands of memory. Gradually, over time, those islands get bigger until they start to join up. But it's a slow process. The first thing I can properly remember is my dad saying, "Can you handle this?" I know that I asked a question, and something came afterwards but I can't remember what. I've been told I was asking what happened in the accident.

It's amazing, really. I was paralysed all the way down my left side, but I can't remember it. I know I had physio but I don't recall any of it until the time when they taught me to walk again. My dad was worried about me – I didn't show emotion. The person that I really am would be frustrated – absolutely gutted – that my life had taken this turn, that things were going to be so much harder. Instead, I just felt numb.

After a month, I moved to neurological rehabilitation centre in Leamington Spa, where I continued with my physio, as well as doing neuropsychology, speech therapy, and having sessions with a neurologist and occupational therapist. They offer counselling, but I didn't find I needed it – well, not at that stage, anyway.

It wasn't until the end of rehab that I realised I'd suffer long-term repercussions. Even then, I would fool myself. They say that you will do most of your healing in the first two years after your accident, so reaching the end of that period can be difficult. It's true – perhaps I haven't got better – but I've certainly got better at coping, and finding ways to deal with situations.

Immediately after the accident, I was told not to do a lot of things – chiefly, not to go back to university. I moved back in with my dad. Knowing that I had my home and people there that I could turn to became very important. For a long time, I imagined that accidents were everywhere. Walking from my bedroom to the bathroom, I became convinced I would fall down the stairs. I refused to let it affect me. I've always been brought up to feel the fear but do it anyway. I'm stubborn like that. The same stubbornness made me decide, a month later, to go back to university. In my mind, there wasn't even an option of not going back. It might slow my recovery – but to me, there was no question. I couldn't think of anything worse than sitting around doing nothing.

And the university was great. The staff did everything they could to help me. It was a small place, and so there was a lot of individual care. Ever since the accident, I've suffered from chronic fatigue and headaches. I tired easily, and had to start taking naps regularly. They provided me with a bedroom on campus. I could go in there and nap or I could go and work, away from the distractions of the library.

The accident made my coursework much harder – though my planning improved no end. I couldn't leave things until the last minute, in case a headache struck and it was game over. I had to make sure I gave myself enough time to get everything done. At the same time, my friends were brilliant. I wasn't able to go out as much as I had before. I managed a couple of nights on the town, but that was it. Still, I lived with four of my girlfriends and, being the final year, there was less emphasis on going out anyway. There was almost always someone else who needed to leave early.

Then, about two months before my final exams, a bad patch hit. I'd had to give up playing rugby, and I was working all the time. I'd begun my final year in the knowledge that I could complete it over two years, but I just decided I had to finish. The thing is, I didn't have a clue how I'd perform. You spend your whole life learning how to do exams, being tested at every level, but I had no idea how the accident would affect me. Now my attention was worse, my memory weak, what would it mean? I decided to go to a counsellor, who asked me what I did for fun. I realised I wasn't doing anything. I made more effort – meeting people for lunch and so on – and things gradually improved.

In the end, my exams were fine. The university was wonderful: I had an ergonomic chair, I got extra time, and I sat in a quiet room. I graduated with a 2:1, which is great – it doesn't close any doors. Still, I'm embarrassed to say that when I found out, all I could feel was disappointment. I wanted a first. Who knows? If I hadn't had the accident, perhaps I would have got it. But then, perhaps not. After the accident, all I could do was work – I couldn't do rugby, or go out – so maybe that would have affected it, taking me away from my studies.

Another ambition was to be a vet, but I knew the accident made it impossible. Instead, I took a few months off and then went travelling in Australia and New Zealand with my boyfriend. On returning home, I worked part-time doing secretarial work at an estate agent. I had been told that there was an 80 per cent chance I'd never be able to work full-time, and though I'd been tempted to try straight away, I was persuaded not to. My sister has a degree in psychology and neuroscience, and she was determined that I wait a while.

At the end of the year, I began working full-time in an office dealing with imports and exports. Now I live with my boyfriend, and work full-time. I have good days and bad days. On good days, no one would know that there was anything wrong. On bad ones, I worry that people must think I'm exaggerating. That's the thing with brain injuries: You look, you seem, so normal, but in fact you're not. Everything is so much harder. I don't want sympathy or pity, just a little bit of understanding.

It's difficult for other people, too. If someone has a broken leg, you can see it, and you know how to help. But if you say "I'm exhausted" – well, everyone experiences that, so it doesn't seem serious. What people don't understand is the scale. My short-term memory has got much better, but I really struggle with word-finding. An easy word will go from my brain. Yesterday, it was "research". I was trying to form a sentence and I just couldn't remember it. To be honest, I've still got to try to remember who I was the before the accident. I know I'm very similar – but I'm not quite the same.

I just want a normal life, really. This season I went back to playing rugby. I only managed half a season, but next year I'm aiming for the whole one. I recently ran a half marathon, and am in training for the Three Peaks Challenge. When I was learning to walk I never thought I'd be able to do that. I do it all in aid of Headway, the brain injury association. It does so much good. And I want to do more learning: I've always said I'd like to do a masters, or a French course. My aim is to be happy, and enjoy my life. And, really, you can't ask much more than that.

Action for Brain Injury Week, Headway's annual awareness-raising campaign, takes place this week. For more information, visit www.headway.org.uk

Interview by Alice-Azania Jarvis

What happens when the brain is damaged

Injury: Traumatic Brain Injury (TBI) is an injury to the brain caused by a specific, one-off trauma to the head. Causes range from car crashes to assaults to accidents.

Aftermath: TBI victims will inevitably experience Post-Traumatic Amnesia (PTA) – a period either of unconsciousness or confusion. The length of the PTA is determined by the severity of the injury. In instances of "severe" head injury, a patient will usually experience at least six hours of unconsciousness.

Consequences: Head injury can damage some, but not necessarily all, cognitive skills such as speed of thought, memory, understanding, concentration, solving problems and using language. Emotional behaviour can also be affected, as can the function of certain bodily hormones.

Recovery: Unlike most other bodily cells, brain cells don't regenerate when they are destroyed. Instead, other areas of the brain take over the work of the damaged areas and new nerve pathways are established. Engaging in activity helps these alternative pathways to develop. Physically, recovery tends to be outwardly strong, but longer-term effects – such as exhaustion – can cause day-to-day disruption.