Ed

Age at interview: 42

Brief Outline: Ed was cycling work when he sustained a traumatic brain injury. There were no witnesses or CCTV footage and he does not remember what happened. Since his injury, he has experienced fatigue, irritability and can be sensitive to noise.

Background: Ed is married and has a son who is five years old. He works as a business manager for a large bank. Ethnic background' White/Other (Jewish).

More about me...

Ed was interviewed four months after the cycling accident that caused his traumatic brain injury. He is unsure how the accident happened because he does not remember it. He hit his head and “shattered” his cheekbone. The severity of his head injury was assessed at the scene using the Glasgow Coma Scale (a scale measuring people’s responsiveness after they’ve had a brain injury), on which he was given “full marks” despite appearing “as mad as a fish and talking a complete load of baloney”. He was taken straight to hospital for an operation on his cheekbone.

 

Ed has been looked after and helped by numerous health professionals' a facial surgeon, a neurologist, an eye specialist, a cranio-osteopath, a neuropsychologist and a cardiologist in case his accident had been caused by a heart attack, which it was not. He was able to access appointments with these professionals largely because he had private health insurance. 

 

Ed tried to return to work after his injury, but describes exhausting himself, becoming irritable and, because he needed to sleep a lot, missing out on seeing his son. At his wife’s insistence, he was signed off work for six months. He hopes to make a gradual return in stages. 

 

Ed’s injury has changed the way he looks at his life. Before, he spent a lot of time at work, stressed. Now, he is aiming to “have a more balanced life” to include “home, work, community”. He wants to dedicate some of his time to helping others. 

 

Ed couldn’t remember his accident, so he was sent for tests to see if he had any health issues...

The consultant, the consultant neurologist that I’m under at the moment, is actually the second consultant neurologist. We decided going to this chap, simply because he’s an expert in trauma type injuries as opposed to the other guy who was more of a general neurologist. 

 

Through him, he was very keen to find out if there was some sort of heart issue that caused me to come off the bicycle. Because it was quite clear that I wasn’t actually hit, but something made me come off. So I went and had quite extensive cardiology tests, and generally the heart was fine, even I’m sort of nudging up towards high blood pressure. So I’ve been advised to shift some weight and actually since the beginning of this year, I’ve come down from some 128 kilos and this morning I was 115. The target is 100, and we’ll see how we get on. But it’s, it’s working well. 

 

Ed went on a retreat after his injury. He found meditating, and improving his fitness and diet...

And so to build on all this sort of stuff we’re looking at doing quite a lot complementary, activities as well. One of the, you know, we’re trying to hit this thing from numerous angles' you know, physically getting into a far better shape than I was before, even though I was physically pretty fit earlier, I was still carrying around far too much weight. We’re getting on top of that. That’s moving the right way. We’re improving the, I’m improving the diet that I’m on. I do an awful lot of the cooking around the house because I’m the one with the time, and I also make sure that I make soup, because I like, I’m now decide to make it, sort of the way I’m going to eat going forward, is in the evening that’s all I’m going to have is soup. So, two square meals a day, plus soup, which is working fine.

 

And as well as that, is generally just trying to be a little bit sort of more focussed and kinder to myself and this is where this, this retreat that I mentioned earlier has sort of come into it. I’ve just come back from a five-day silent meditation retreat at [retreat location] in [place]. Many people were staggered that I was going on it. Because it’s, personality wise it’s just something that I would never do. But I went on it. It took a couple of days to actually get into it and, finally, on day three I realised that I could sit there, yeah, it might only be for five minutes, at a time, and then a little look around and then do another five minutes. But I could sit there, feel that my arms, shoulders, generally my body became extremely relaxed. Things floated into my head. They floated out. It didn’t really matter and that was, ah that’s a way of meditating. That’s fine, it was starting to work. 

 

Ed’s friend also had a serious injury and advised him recovery would take at least six months,...

The information that you got about your brain injury where did it come from and what was kind of thing you were being told?

 

Well, initially stuff was coming off the Headway website. And then the consultations with neurologists and it was that sort of level of information. And the thing about it is that it’s all fairly, it’s fairly sort of wishy-washy. You can’t put a time scale on it. As well as that, I spoke to a very good friend of mine, his now wife had had a very serious horse riding accident and basically she turned round and said, “Listen, I had to stop, I had to take six months out. Take six months. Don’t take out the corners. Take six months. There you go. Period.” I went, “Right okay”. 

 

And it was actually, it was very similar, because it was, I remember many years ago, I was chatting to actually her husband, my friend and we were talking about sort of house purchases and house sales and he turned round and said, “Whatever happens it takes three months by the time that people have, you’ve engaged the estate agent, people have been round to look, offers have come in, then the conveyancing starts, the mortgage applications etc., etc., etc.. for exchange and then completion it always takes three months. Guess what? It always takes three months. Head injuries, well, his wife turned round and said, “It always takes six months.” I’m pretty sure it does actually. I’ve read up on James Cracknell’s website and his antics, especially since he was clobbered off his bike in the middle of the USA by that truck. And yeah, six months again, and then additional healing on the back of that. And, so, you know, I take from that.

 

Ed explained to his insurers that they should pay for the help he needed to fix his brain just...

One thing I would like to add though, is part and parcel of my, my rehabilitation and care involves, you know, these neuropsychology sessions. They are very useful. They are very valuable. My insurance company had a slightly different view of them. And in fact actually turned round and said, “No, we’re not going to pay for that aspect. Because we don’t, in our policy guidelines and documentation we don’t do that.” And I had, I was almost in tears on the phone after a couple of discussions I had with them, and I actually got, I turned round and said, “Well if I’d broken my leg, or my pelvis or whatever, in the accident, you’d pay for as much physiotherapy as was required to get me well again, wouldn’t you?” The answer, “Yes.” I said, “But I haven’t done that, I’ve broken my head.” 

 

Unfortunately for us, brain controls everything else. I’ve got a broken brain. I need some help to fix it. It’s exactly the same. Neuropyschology is not different than physiotherapy. It’s just a different part of the body. And it was only when the lady I was speaking to went and referred it further up the chain and started speaking to more sort of medical practitioners, that Aviva have actually changed their policy documentation, so that when people have had these sorts of accidents, they will provide this sort of care. What they were trying to prevent and prior guard themselves against, as in all insurance companies do because it’s, it’s a risk business, is, if someone’s had a stroke, they don’t want to end up footing the bill for this sort of care forever and a day. The idea is that I’m not going to be having this forever and a day. However, what I want to prevent is getting some sort of mental illness on the back of it, which invariably I would have, if we weren’t doing these sort of sessions. So, that in itself, yeah, I have made a little difference. That’s good. Yes, ideally no one else would have this sort of injury, but if they do, and if they’re covered by that insurance company, and they’re recommended to go down this sort of line, hopefully, it means that they won’t have to go through what I had to go through to explain it and articulate it, and argue the point.

 

Ed was surprised that something as simple as earplugs helped him overcome the frustration he felt...

But on the way down to Cornwall, four hours into a six hour drive, I literally went a bit mad. I had a massive breakdown, you know, asking everyone to sort of be quiet, hitting myself, hitting my head with my hands, crying etc., etc. I couldn’t cope with a little bit of noise in confined space for periods of time. And it actually took me a couple of days to recover from that trip down, and it was as a result of that experience that I decided that actually, I need to have a mechanism to take myself out of it a bit. Ear plugs are the easiest thing I can do, pop into any old chemist, buy some. And it actually has made quite a significant difference in order to do that. It made quite a difference on the holiday and it’s made a difference since.

 

One of the things that we did, on the way, when it came time to return from Cornwall, was, I got put on the train at St Austell, my wife and son drove. And they met up with, with my wife’s cousin. They had a little play on the way, etc., etc. and I got the train back, which was actually, because there was a lot more space, and I had the ear plugs in, even though it was a fairly full train, it was an awful lot easier to cope with.

 

Ed went back to work before he was ready. He was getting very tired and frustrated, so he got...

I actually, I returned to work some two weeks after the accident, generally thinking that I was fine. In actual fact I got a little bit bored being at home and so I naturally thought it’s time to get back into it. I did in actual fact try to log in remotely about two days after coming out of hospital, which would have been four days after the accident. And for one reason or another I just, it just wasn’t working. I couldn’t get it to work. I couldn’t understand. I was getting very sort of, sort of frustrated and angry with the situation and then it ended it locked me out, sort of gave up, in sort of a bit of a huff.

 

But to those around me that were witnessing it wasn’t all together all there up top really. But anyway, I subsequently, back to, I returned to work after two weeks and on, on sort of reduced hours. However, those reduced hours were still, I’d get up, at just after, you know, quarter past five or so, sort myself out, walk up to the bus stop, get the bus, then still I’d go to the gym for an hour, even though it was far lighter, mainly because of concern over putting too much stress on my facial fracture, and popping my plate. 

 

But over a period of two months I was starting to find, even though I wouldn’t admit to myself, but it was painfully clear to others around me, especially my wife, that I was getting more tired progressively earlier in the week. So, instead of hitting that wall probably on a sort of Thursday, Friday, I start to hit it on a Wednesday, sometimes a Tuesday, sometimes, you know. 

 

By raising money for charity, Ed feels he is turning a bad situation into something positive.

And that’s just another way, in which I’m just trying to just turn a bad situation into something that is more positive. I mean last year, I, I went, I did a charity cycle ride, for, mainly for selfish reasons, because I wanted to do, I wanted to cycle to Paris. I fancied doing it. I wanted to heave my bulk on my bicycle to Paris and I did it. It was great. And I did it for the Anaphylaxis Campaign, because my son has anaphylaxis to dairy, eggs and some other food stuffs as well. It was fantastic. I felt really good about it. And partially selfish reasons, but partially I’d helped a small charity, right, that tries to make its own little sort of difference as well.

 

Next time I will invariably do other sort of sponsored whatever it might be. And the next charity I probably have a go will, will end up being Headway. But the way I see it now, is I’ve got three charities that I have a personal interest in' Anaphylaxis Campaign, Headway, and also [retreat location] as well. Because all these things have helped me, or helped those around me in one way or another. And I think it’s important that you start giving a little bit back. And that brings us back to the thing about London.

 

Because everything in this sort great and large city of ours, everything is done so frenetically, so quickly, so selfishly because people don’t have time to look out of, look outside of their own little sort of narrow sphere. And bring a little bit more humanity to everything. You give it out, you receive it back.

 

Ed feels brain injury is almost the worst kind of disability because survivors’ impairments are...

Do you think that brain injuries are a form of disability?

 

They’re actually...brain injuries, and actually sort of mental illness, is, to some extent, the worst type of disability, because it’s invisible. You can’t see it. I mean I stand up, I look in the mirror, I look, apart from my mad beard, I look, I look actually, I’m in pretty damn good shape at the moment. You know, I’ve got fitter than I was. I’m losing weight. I’m shaping up pretty well. You look at me, I look fine. However, I haven’t got a glass skull. You can’t see what’s in there. And in that respect it’s very difficult it’s very difficult to come to terms with. If you add into the fact that there is still an awful lot of stigma with, associated with brain injury, or mental illness, anything to do with the brain, it actually manifests itself to actually, it is, very problematic. It does disable people. It makes people less able to do what they should be able to do. 

 

Yes, it’s not it’s not as physically obvious as someone that’s in a wheelchair, got one leg, missing an arm, blind, deaf, or whatever it might be, right. But it’s, it certainly affects people. It affects people very significantly, because, you know, if you, you might be, I don’t know, let’s say you’re on the bus and you have a funny turn, people around you don’t know there’s a problem inside. All they know is that someone’s gone a bit mad. Someone’s offending them. Someone’s stepping into their space. They become fearful. So yes, it is very, very much a disability. 

 

Ed wanted to recover as best he could so that his son wouldn’t experiences any negative effects...

But unfortunately some people, events over take them a bit and it gets to a stage where it gets unnecessarily bad. And in some instances, it can end up getting beyond repair. And the important thing for me, is I don’t want, I mean for myself, for those around me, I don’t want to go down that route. So we’re putting quite a lot of corrective action at a comparatively early stage in the life cycle and I want to be, I want to end up being calmer, more pleasant, better. 

 

I don’t want, and I got this across in a couple of the sessions at [retreat location]. I don’t want to be responsible for my son growing up with deep seated issues and problems, that is going to affect him throughout his life. That is wrong. And that is a responsibility that I have and it is something that I can control. There’ll be lots of other things that end up happening to him, that I won’t be able to control, but that is something that I can. And I do have responsibility as a parent to do that. 

 

The information Ed received was “wishy-washy” and he likens recovery to buying a house, it takes...

The information that you got about your brain injury where did it come from and what was kind of thing you were being told?

 

Well, initially stuff was coming off the Headway website. And then the consultations with neurologists and it was that sort of level of information. And the thing about it is that it’s all fairly sort of wishy-washy. You can’t put a time scale on it. As well as that, I spoke to a very good friend of me, his now wife had had a very serious horse riding accident and basically she turned round and said, “Listen, I had to stop, I had to take six months out. Take six months. Don’t take out the corners. Take six months. There you go. Period.” I went, “Right okay”. 

 

And it was actually, it was very similar, because it was, I remember many years ago, I was chatting to actually her husband, my friend and we were talking about sort of house purchases and house sales and he turned round and said, “Whatever happens it takes three months by the time that people have, you’ve engaged the estate agent, people have been round to look, offers have come in, then the conveyancing starts, the mortgage applications etc., etc., etc.. for exchange and then completion it always takes three months. Guess what? It always takes three months. Head injuries, well, his wife turned round and said, “It always takes six months.” I’m pretty sure it does actually. I’ve read up on James Cracknell’s website and his antics, especially since he was clobbered off his bike in the middle of the USA by that truck. And yeah, six months again, and then additional healing on the back of that. And, so, you know, I take from that.

 

Likewise a friend a Sarah’s, or a work colleague of hers, her husband had a cycle, a mountain bike accident again right, this is how it works, he had x-months off. He was a major in the Army so it wasn’t exactly that he was like sort of oh I’m not bloody...you know, he was fairly sort of robust, etc. And then went through a period of slowly back into work, whereby he would be taken to work, work half a day, then taken home, etc., etc. Again, and so looking at these sorts of experiences from other people as well as professional experience from sort of doctors that I’ve been seeing etc., etc., and doing a little bit of research on the internet it’s all started giving me more information and that’s basically where I’ve got it all from. It’s no sort of, there’s no one stop shop. You’ve got to be fairly resourceful in getting it.

 

Ed would encourage others to admit when they have a problem, but not to give up hope.

Time is a good healer. Don’t give up on hope, and don’t let those around you give you sort of absolutes, right, because you can’t give up on that. My wife has been fantastic in many, many respects here. However, one of the things that she, because, mainly because she’s scared, she has turned round and said, “I don’t think you’ll be going back to work.” Or, “I don’t think you’ll be going back to work in your previous job in that, doing that role. I don’t think you’re going to be able to do it.” Well that, that’s hit me pretty hard. I didn’t like it, because and it was actually at the previous neuropsychology session that we both attended that actually the psychologist turned round and said, “No, hope is very, very important here. Don’t take that away. Don’t forget it. Take it away. Hope.” 

 

So basically time, hope and look for others experiences. If you look there’s an awful lot out there. This hopefully will be part of it. But, as well as that, Headway, fantastic charity and, provides a lot of guidance, support for people that have had brain injuries. 

 

Likewise this [retreat location], and it is it’s everything. Everyone that goes to these sorts of retreats, goes for a reason. Invariably something has affected them very traumatically. And it has affected them mentally whether it’s a physical injury such as I’ve had or an emotional injury caused by whatever situation there. There is an awful lot out there, but don’t be shy in stepping up and saying I’ve got a problem, let’s do something about it. Because if everyone can do that, everyone can admit it, it then it doesn’t become such a stigma and without it being such a stigma the disability element of it deteriorates.

 

Ed says life in London is frenetic, noisy and very busy. He didn’t think about this much until...

Well there’s an awful lot going on. It’s frenetic. Yeah, life is very, very busy in London. Everyone is rushing around. Everything is at a hundred miles an hour. Yeah, and people don’t have time for other people, and so you’ve pretty much got to be on your ball all the time.

 

You said there about London sort of being uncaring, or people being uncaring.

 

Hm.

 

Is that something you thought about before your injury?

 

Not a great deal. I was aware of it. And the only reason London itself is uncaring, the people within it are fairly uncaring is, is because everything is done so quickly. Everyone is, everyone is moving at a hundred miles an hour. The situation just demands it, turns people into it, etc., etc. And there’s nothing you can particularly do about it. That’s just the way the world is, especially when you’re talking about in a really large metropolis. If you don’t like it ship out. But I like some aspects of it. I don’t like other aspects of it. I prefer to stay here. So we’ve just got to deal with it. And be aware of it.