Simon A

Age at interview: 46

Brief Outline: Simon sustained a severe traumatic brain injury and numerous physical injuries after he was knocked down by a car 14 years ago. After his injury he had memory problems, experienced fatigue and his personality changed. He was unable to return to work as a chartered accountant.

Background: Simon is a health and fitness consultant. He is married with three children, aged 19, 21 and 27, and has one grandchild. His ethnic background is White English.

More about me...

When he was out running one winter morning, Simon was knocked down by a car. He had a severe traumatic brain injury and nearly every other major bone in his body was broken. His teeth were smashed and his left cornea was partially detached from the retina. 

 

The paramedics conducted some emergency work at the roadside before flying him by helicopter to hospital. At the hospital, he spent three weeks in an induced coma to minimise the swelling to his brain that may have caused further damage. 

 

Simon’s wife is a trained nurse, although she was working in insurance at the time of his accident. She took a sabbatical from work to care for him. Simon says this was “physically and psychologically” demanding for her. 

 

He was unable to walk, so his wife had to lift him into bed or into the bath. Because of his head injury his behaviour was erratic and he describes making unreasonable demands on her, like “waking up in the middle of the night expecting her to cook” for him. 

 

Several months after discharge Simon started to attend physiotherapy. He learned to walk again by spending about two hours a day in the pool simulating running whilst wearing a buoyancy belt. This increased his self-confidence and helped him to sleep better. 

 

Because he was unable to return to work he became involved in a programme lead by a community head injury team that helps people find what kind of work they can do after brain injury.

 

At the time of his injury Simon had a very busy job at an investment bank in the City of London. He thoroughly enjoyed his work, despite being so busy and having to travel a lot, and he had a great memory. 

 

After his brain injury he noticed that he had memory problems and experienced fatigue. According to Simon, it took 10 years for his personality to come back, which, he says, “is a short time in the context of head injury”. Sometimes people don’t believe that he had a brain injury because his scars are fading and he speaks well. 

 

Simon does not feel resentful towards the driver who also sustained some injuries and was unable to continue working. He was awarded compensation for his accident and, as a result, does not have any financial worries.

 

His employers were very supportive. They continued to pay him until it was decided he could not return to work. He was then put on a long-term disability scheme, which is financed by an insurance company. He was also eligible for Disability Living Allowance.

 

When some of his friends found out about his compensation, they asked to borrow money. He lost contact with some of them when he told them he would not lend them anymore. He finds it difficult to make new friends because he frequently feels tired, which makes it hard to do things.

 

Simon has a good relationship with his children. They respect him because they’ve seen how he struggled to “rebuild his mental and physical health”. He says that his relationship with his wife 14 years after his brain injury is stronger than ever.

 

Rehabilitation provided many benefits for Simon A. Most importantly he felt he was contributing to his progress.

And also it gave me self-confidence which I’d lost completely. And it gave me a sense of, contributing towards my recovery and I was actually actively doing something to, or I could see, I could see each day that I was making progress. I was getting fitter. And it was helping me relax as well afterwards I would say. 

Simon A had short-term memory problems after brain injury. He read and re-read 'The Diving Bell and the Butterfly' which helped him develop a positive attitude to recovery.

I used to do a lot of reading in those days, even though I was finding it very difficult to retain the stories, because of my memory problems. I couldn’t watch a film for instance. It was so frustrating, because I couldn’t follow the story. My memory was so impaired. But there was one short book in that year. I think it was the Booker prize winner of that year in 1997. It was the editor of, of the French women’s magazine, Elle. Jean-Dominique Bauby, who himself, he suffered a head injury. I think he had a stroke and he suffered from locked in syndrome. He wasn’t able to communicate in any way, other than by his physiotherapist. He managed to learn by blinking his left eyelid. He used to dictate 40 pages of a book called the Diving Bell and the Butterfly and that book I managed to retain. I read that avidly and I retained what he was going on about. And that motivated me quite a lot. And I thought, if this man, who was suffering such adversity, it made me think, what am I feeling sorry for, and I used that technique as a strategy within work situations after that.

 

So I’ve always tried to, whenever I’m come across different stages of adversity, throughout this journey of rehab I’ve had, I’ve tried to find the positive in each of those instances and turn it round.

 

It took about 10 years for Simon A to feel he had recovered, but he thinks this is a short time in the context of brain injury.

Whereas after the brain injury I feel that I became, my personality changed a little at times. I became more, much more gregarious and I think it’s come back to how I was before now, you know, fourteen years afterwards. I’ve read that many people suffering from a brain, like for instance my wife’s father who fell off his push bike in Ireland, he sustained a head injury and he changed, his personality changed completely. He changed from someone like me who was really reserved and quiet. He became the most, the life and soul of the party. He’s now, he is completely different. All because he hit his head on the pavement. And apparently this happens quite a lot with brain injury.

 

But you feel that you’ve got your personality back…?

 

Gone back to how I was before, yeah.

 

Yeah. And how long do you think it took for you to get back to who you were?

 

Ten years, which is a very short time in the context of head injury. What you need to understand is that head injury is a life time, it’s a life sentence, if you’d want to treat it as a problem, or it is, it’s a life journey that you need to negotiate. It’s the most important you really need to understand. Its, if this happens to you early on, like when it happened to me I was 30. And if I live for another say I live, what’s the average? Around 80. That’s a fifty year journey you’ve got. So ten years is nothing really.

 

Simon wants brain injury to be recognised 'as profound as any other disability'. He didn't know he was entitled to benefits and thinks his GP could have told him.

I didn’t know that I might even be entitled to some help some State benefit help. I didn’t know I was entitled to DLA, for instance… which would have been helpful in the early years. But it’s all relative, and when you think what I’ve been getting paid it’s probably much more than any other head injured people have ever had, so I’m not going to complain about it. I just donate it to the country. But in those early years my GP could have told me that I’m entitled to DLA. My sister told me that I was entitled to the highest rate. When I was in the wheelchair, I should have been getting the highest rate for mobility and for, for care apparently which would have been… It would have meant about six or seven thousand pounds tax free benefit each year. For those years for about seven years, which I didn’t get, I didn’t even know about.

 

Well because, like most people, I think disabled people are people that are in wheelchairs and people that are blind or have got some other sensory impairment. I know now that I have, I do have, I have a mental disability and it is as profound as any other disability. And it should be recognised. That’s why I claimed the DLA. It’s not that I need the extra £15 a week as such. Really it’s not. It’s immaterial. 

 

The amount of Simon A’s compensation was made public and some people he thought were friends kept...

That’s not such a happy story to report. I did, I think publicity about the huge level of compensation I got, seemed to get out. It was in the papers. And I got lots of begging letters and lots of fair-weather friends. I gradually removed most of those. I found out who my real friends were and I’ve really quite limited the number of people I really want to know. And even, even a friend from before the head injury, someone I knew at university in the late 1980s, a man who asked me to be godfather to his child. He was borrowing, pestering me to borrow money all the time, and I’ve even fallen out with him now, because I don’t, I said, “I don’t lend any money to anyone now.” And he hasn’t contacted me for about six years. So really, I’ve become isolated again. 

 

That’s very tough.

 

Yeah. But I think that if people are going to be like that, I don’t really want to be friends with them. And I had lots and lots of fair-weather friends.

 

After his injury, Simon A realised he could use the story of his recovery to motivate others.

And do you see your brain injury as a problem or a journey?

 

Sometimes it’s a problem. I think the key is, you have to develop strategies to cope with it. You have to know your limitations, and know, like, for instance, certain aspects of my abilities, I’m actually better at now than I was before, before I know how, I know what my, I know what I can’t do, and I really focus all my energy on things that I’m good at.

 

And what kinds of things are they?

 

Well what I do now is, in work, I’m much better at motivating than I was before. Because I use my, the terrible adversity that I went through. I show, for instance I show the before and after pictures of my personal, physical rehabilitation to some of the elite athletes that I’m responsible for coaching. And I can completely change a session, with the approach that these, these athletes can have to their training. And they need stimulating and they need motivating, to move on to a different level.

 

He knows his life is different from before, but Simon A is determined to keep trying to improve.

I know now that I think I did at the time. I know now that I won’t make well I know my life is going to be different. But I will never give up trying to make improvements and to, because I know the brain is, I know improvements can be made many, many years afterwards and it’s not just limited to two years. You know, I’ve read some research to suggest that you make, you can make significant improvements, even ten, twenty years post head injury. 

Simon A thinks the GP should have told him he was entitled to claim Disability Living Allowance. He found out after 7 years through Headway.

And do you feel that you’ve had enough information?

 

No I didn’t, I didn’t know that I might even be entitled to some help some State benefit help. I didn’t know I was entitled to DLA for instance, which would have been helpful in the early years. But it’s all relative, and when you think what I’ve been getting paid it’s probably much more than any other head injured people have ever had, so I’m not going to complain about it. I just donate it to the country. 

 

But in those early years my GP could have told me that I’m entitled to DLA. My sister told me that I was entitled to the highest rate. When I was in the wheelchair, I should have been getting the highest rate for mobility and for, for care apparently which would have been… It would have meant about six or seven thousand pounds tax free benefit each year. For those years for about seven years, which I didn’t get, I didn’t even know about.

 

And have you since looked into that or … have you ever had DLA?

 

Yes.

 

And how did you go about organising that?

 

I found out about it through Headway. They told me…I heard some, some people there talking about it.

 

Some other survivors of head injury?

 

Patients yeah. They told me that they had compensation, which meant that they were not entitled, you know, they got quite big compensation, they got lump sum compensation. And they told me that the DLA was not, it’s not a means tested. It was a disability testing really. It was basically on how, how your impairments, how your functioning impacts on your life. And that’s how it’s measured. So I applied for it and I get the, I get the lowest, the lower rate for one of the, for the mobility and I get the middle rate for the, for the care, for the brain injury.