And then I think the other thing is that it does get better. It might get worse before it gets better and do bear in mind that that period between discharge and having settled into a new way of doing things at home can be at least psychologically more challenging than anything in hospital.

But over time things do get better. And I’ve only been out for a year and, you know, I’m, I’m already going to the cinema and theatre and restaurants, and am able to go out and visit friends in their homes. And you know, go shopping. I’m able to make a valuable contribution at home, you know, in the house supporting my wife with my children, you know, helping them with school work and, you know, reading with them and… So it’s different and I’m not going to make out that it’s anywhere near as good as it was before, but it does get better and I think the longer you’re out and, certainly the longer you’re out and stay out of hospital, the better it gets. That certainly seems to be the experience of people who’ve been injured for a lot longer than I have.

And life generally becomes a lot more effort, everything takes a lot more time and a lot more energy, things that you can do, and obviously there are a lot of things that you can’t do any more. So organising yourself and being clear in your own mind about how you want to spend the time and the energy that you have got I think is incredibly important because I think it would be very easy to vegetate and go backwards. So it’s very important to, as I say set your priorities and have goals and try and make sure that you do what you need to do. And try and make sure that you do what you need to do. And that you keep improving, you keep expanding your horizons and not, not allow your disability to define your life. Obviously it has a massive impact on your life, but if you can avoid your injury defining your life then I think you’ll do well. And certainly all the most inspirational people that I’ve met or who have heard about who have the same kind of injury that I have are the people who have not allowed their injury to define their, who they are, and their relationships and what they do. Very difficult.

So to start with I had to be pushed and then there’s quite a steep from the house up to the park. So again it took me three or four months to be able to get myself to the top of the road. But then there’s quite a good park at the end of the road. So I try to push myself round there. So I do about an hour at a time. And I’m in the process of getting a, a weight machine, an exercise machine, which will allow me to exercise all the muscles that I do have control of and that work, from my wheelchair, with the limited hand function that I’ve got without needing any help. So I hope to take delivery of that in the next few weeks and then I will be able to exercise whatever the weather’s like, because obviously going out to the park when it’s cold or wet is not a very good idea.

Why is it not a good idea?

Well cold. I didn’t mention but another aspect of a spinal cord injury is you lose control over your body temperature. So your body temperature tends to adapt to whatever the ambient temperature is. So going outside you have to make sure that you are very well insulated if you do go. And when it’s wet, you tend to lose 75% of the grip on the rims of your wheelchair, so it’s exceedingly difficult to push, especially uphill or, more importantly, coming downhill if you have no control because you have no grip that can be quite dangerous. So I haven’t had any problems so far, but I haven’t been out in the wet too much.

Well there’s a charity called the Queen Elizabeth Foundation, which is down in Carshalton in Surrey, who have a simulator, a driving simulator, which they assess your physical and reactionary capabilities. And then they have a range of adapted cars that you can try out and they have a very small track with, you know, corners and bends and obstacles and traffic lights and, for you to try out, and then they write a report and then you have to send that to the DVLA who then amend your licence and, if necessary, get you to undertake some new instruction and, if necessary, retake a test. So I’ve just started that process now.

Okay and have you any sort of positive or negative thoughts about driving again?

Well I mean it would be a great achievement if I were able to do it. So that is one of my long-term rehabilitation goals. I’ve no anxieties about it. I mean Ias I said, I’ve been assessed. I know I’m capable of it, but the thing that is stopping me at the moment is my inability to transfer. So that’s what I need to work on. And, you know, I expect to be able to, but I don’t know how long it’s going to take.

And what’s your sort of first memory after the accident?

I vaguely remember my wife being around. So, I subsequently found at that she flown out to Spain the evening of my accident. And I can remember being convinced that the nursing staff were trying to kill me. I subsequently found out that that’s quite a common experience for people who are taking powerful drugs, which I was. So those were my abiding memories of hospital in Spain. I don’t think I was aware of what was happening to me, or what had happened to me at that stage.

And were you awake and on the ventilator?

Yeah, I think I was conscious some of the time on the ventilator. I think my conscious state was highly inhibited because I don’t think I could really make sense of the situation that I was in and I don’t really remember an awful lot about what happened to me there. I don’t even remember an awful lot about, you know, my relatives – my brother came out, in addition to my wife. My sister-in-law was there as well, who happened to live quite close to where I had my accident in Spain. But it was only after the event that I was told a lot about their involvement.

And what was their role and their involvement at that stage?

Well my sister-in-law speaks fluent Spanish. And her, an ex-boyfriend of hers was a doctor, a Spanish doctor, so they liaised between me and my wife and brother, and the people in the hospital who, none of whom spoke any English. And my wife and my brother were obviously keen to find out as much as they could about what had happened and what my condition was and their primary interest was to get me back to the UK, which wasn’t at all a straightforward matter. Again, I didn’t know anything about that at the time, but I subsequently found out, it was exceedingly difficult to get me repatriated.

Well what I found is, very, very little is known about spinal cord injury outside of the very small community of sufferers and specialists. So, for instance, as I mentioned my wife is a GP, but I don’t think she’s ever had a spinal cord injury patient on her list. The surgery that I’m with haven’t got another one. So, there’s no expertise. The district nurses who come to see me I think they do have a couple of other spinal cord injury patients, but the nurses who look after me, for instance, have no personal experience of bowel management, so they’re unable to provide any advice or assistance with that. So and the knowledge in the world outside of the health care industry is even less. So you know, I realised that before my injury I don’t think I’d ever known anybody in a wheelchair. I certainly didn’t have any friends or family or colleagues or associates or anybody who I came across regularly and even I don’t remember having come across anybody in a wheelchair at all.

So you know, you are a fairly unusual person, and especially with spinal cord injury, there are so few of us, that, you know, there is very little knowledge or understanding of your condition and you do have to rely on, you know, other people who are injured or very small number of health care professionals who have chosen to specialise in this area.

There are, you know, there’s a certain amount that you can get off the internet. There is, you know, there’s some charities, there’s the Spinal Cord Injury, well sorry, it’s the Spinal Injuries Association, the SIA. Generally speaking you’re in a very small population and for the most part you have to look after yourself.

So I have a helper who helps me get dressed. Well, helps me with my bowel management routine and with my washing and dressing in the morning, and with my hand and leg exercises, and with my going to bed in the evening.

Are there any sort of difficulties with having your helpers living in the house?

Yes. I mean it’s obviously very intrusive, and you sacrifice quite a lot of privacy, not just of your own, but of your family’s as well. So, you know, I have somebody living in, so there’s somebody around 24 hours a day and as I say I need to, I need help in the morning, so from when I wake up until I’m up and about in my wheelchair, which is usually about two and a half hours, three hours. And my, my family are around for part of that time, so there’s, you know, an extra person involved. And then again at night, and less intrusive during the day. But, you know, if I go out at all, I need, I still need help. So, you know, whether it is pushing round the park – although I wheel myself in my chair, my carer needs to come with me in case I fall over, or, you know, get too tired. And obviously if I’m going out in the car, I need to get wheeled into the car and they need to drive. So yes, it’s exceedingly important that you get on well with your carers. And if you don’t you probably need to change them sooner rather than later.

And as for the bowels that’s you can train your bowel, so that it evacuates once a day. So typically that involves the use of a suppository. So you have to insert a suppository into your rectum. So if you can you do that yourself, if you can’t you have to get a carer to do that. And then typically 40 minutes later you can, if you’re lucky your bowel will evacuate spontaneously, so hopefully you will be sitting on a commode or over the loo on a, on a commode chair. Or if not, you’re lying on the bed and you might need digital stimulation and evacuation, which is when your carer has to stick their finger up your rectum to evacuate your faeces. So it’s all pretty unpleasant stuff, but again it’s something that you get used to. So as I say that’s something that everyone with spinal cord injury has to get used to.

My wife is my wife. She’s not my carer or my GP. And I think we made a very conscious decision to have it that way. And I think it’s certainly for my relationship, trying to retain as much as you can of the normal relationship. Certainly with my wife I think it’s been very important to do that. So no, I have somebody who’s my GP. And my wife does not get involved with my care, especially not my bowel or my bladder management.

And why is that?

Because I thinkwell first of all she doesn’t want to. I mean it’s not very pleasant. And I think it’sshe doesn’t want her relationship to be one whereby I am dependent on her, and she feels responsible for looking after me 24 hours a day, which I think is the way both of us prefer it.

Well I had private medical insurance that covered repatriation in the event of an emergency. If I hadn’t have had that I think I would have had to have stayed in Spain for treatment, which would have meant being away from my friends and family and being treated by people whose language I couldn’t understand, in a system that I didn’t know anything about. So that would have been a nightmare. But the insurance company made it as difficult as they could because I was in a very unstable health position, so they said that it was better for me to stay where I was, whereas clearly my wife and brother felt very strongly that I should be brought home and treated in the UK. So, I think it was, it was very difficult for them to persuade the insurance company to pay, I think it was about £35,000 to get me brought home in an air ambulance because I couldn’t be brought home on a normal scheduled flight. So I got strapped into a small aeroplane and flown at low level, low altitude, because of my breathing problems, back to the UK.

But I think people who you come across assume that you are a well person, who happens to have to sit in a wheelchair rather than walk. So, you know, they are unaware and have no reason to be aware of you know, the problems that you might have with your bladder and your bowels and your skin and your chest, and, you know, your paralysis in your fingers and… And maybe its best that way, because I think you don’t want to be thought of as any more incapable than you need to be.

But sometimes you do kind of get the impression that people almost think, Well, I bet he leaps out of his wheelchair and jumps into bed when he gets home in the evening And obviously you think, I only wish I could.

What do you have to do to protect yourself against pressures sores or skin ulcers?

Well again you get taught a lot about prevention in the Spinal Injury Unit. When you’re there. So it’s about building up the tolerance of your skin. So, for instance, to begin with you’ll be turned when you’re in bed at night. You have to turn every four hours to make sure that you’re not lying on one patch of your skin for too long. But over time your skin develops tolerance and you get taught how to, you know, shift the pressure around, as you can. So, by leaning forward in your wheelchair or pushing yourself up, if you can and how often you need to do that. And then there are simple things like making sure that your, the clothes that you wear aren’t too night, trying to make sure that when you’re in bed you’re not lying on anything hard or that your sheets are not creased. So, I mean, touch wood, since the sore that I developed when I was being repatriated, I haven’t had any major skin problems since then. But I have got a large scar on my sacrum, which is just above your bottom. So it’s the hard area around your tail bone. So I’ve got a large scar there, which obviously is going to be sensitive skin tissue that I’m going to have to be careful of.

Do you have to check yourself for sores?

Yeah, you have to check your skin regularly. So certainly first thing in the morning and last thing at night, and if you if you get, new clothing – so especially trousers or shoes or socks – you must check your skin before you wear them for too long at one time to make sure that there aren’t any seams or areas that create pressure. So I bought myself a pair of ankle length boots and I developed an early stage sore on one of my ankles because the leather was quite hard so it was pressed against my ankle. But fortunately it disappeared over a few days so it was just a redness of the skin. So the skin didn’t break down and it went away. But you’ve got to be careful.

And do you check yourself or does somebody help you with that?

Well both. So I have a helper who helps me get dressed. Well, helps me with my bowel management routine and with my washing and dressing in the morning, and with my hand and leg exercises, and with my going to bed in the evening.

And life generally becomes a lot more effort, everything takes a lot more time and a lot more energy, things that you can do, and obviously there are a lot of things that you can’t do any more. So organising yourself and being clear in your own mind about how you want to spend the time and the energy that you have got I think is incredibly important because I think it would be very easy to vegetate and go backwards. So it’s very important to, as I say set your priorities and have goals and try and make sure that you do what you need to do. And try and make sure that you do what you need to do. And that you keep improving, you keep expanding your horizons and not, not allow your disability to define your life. Obviously it has a massive impact on your life, but if you can avoid your injury defining your life then I think you’ll do well. And certainly all the most inspirational people that I’ve met or who have heard about who have the same kind of injury that I have are the people who have not allowed their injury to define their, who they are, and their relationships and what they do. Very difficult.

Well at the race track, I had first aid. So my helmet was removed, and I think I had to be resuscitated, and then at hospital in Spain, I had my neck fixed. So I broke my neck and one of the discs in my neck popped out and into my spinal cavity, and injured my spinal cord. So it happened at the middle level of my neck between the fifth and the sixth vertebraes. So they took the disc out and fixed my neck with come steel rods and a plate, which was fixed with screws. And my lungs ceased working so I had respiratory failure, so they had to put me on a ventilator, so I had a hole in my neck and was on ventilation. And I think I was unconscious for quite a long time.

Do you take any medication for the spasms?

Yeah, I do, I take quite a lot of medication and they have quite nasty side effects. So they cause drowsiness and loss of memory and indecisiveness and I did get to the point with my anti-spasm medication, where I felt it was affecting my mental state so much that I cut the dosages in half. And, although my spasms got worse, they were tolerable and I decided to live with, you know, a higher level of spasms, but a lower level of mental disturbance. So it’s, so it’s quite difficult to get the right balance and I now have a cocktail of drugs rather than relying on one, which I think also helps.

And when you decided to reduce your dose did you do that with medical advice?

Yes.

And
Well no, I told my clinicians that I wasn’t prepared to live with the level of mental disturbance that I was experiencing, and so they agreed to reduce the dosage of the Baclofen and increase the dose of the other two.

Tell me a little bit more about the, sort of the mental disturbance that you experienced when you were taking the higher dosage of the Baclofen?

Well I mean it’s worst manifestation was finding myself in a state of torpor. I would be sitting somewhere just staring out of the window and not really knowing why. And I can remember, just before I decided to do something about it, realising that my mobile phone was ringing and picking it up, and it was my brother calling and he said, you know, What are you doing And for a while I didn’t know how to answer him. And I didn’t know how long I’d been there or what I would have done if my brother hadn’t called, and that’s, I think, when I realised that I had to do something about it.

What modifications did you have to make to it?

Well we live in a town house, so it’s a ground floor, first floor and second floor. So we managed to have a lift installed, which allowed me to use and ground and first floors, not the top floor. So I can’t get to my children’s bedrooms, which are at the top of the house. But I have, I have a hospital bed, but it’s in the same bedroom as my wife, so I’m in the same bedroom as my wife.

So, in addition to the lift, we’ve had all the floors in the house levelled at least on the ground and the first floors, so that I can wheel myself around. We’ve had the bathroom converted into a wet room so I can, I can transfer into a shower chair and then wheel myself into the bathroom to have a shower and then wheel myself out again. And we’ve had the basins modified so that I can wheel up to them and get my legs underneath the basin and, to wash my face and brush my teeth, and shave and that kind of thing. And we’ve had, or I’ve mentioned that we had a slope up to the pavement or we’ve managed to have the path raised so that the gradient is lowered so that I can get out more easily. We’ve had some decking put in the back garden so that I can wheel out of the kitchen straight out into the garden. And we’ve had the garage converted into a gym. So I’ve mentioned the exercise machine. So we’ve got somewhere I can go for exercise.

Then how did you finance all the changes?

Well I was in a fortunate enough position to be able to finance that myself, but there are charities who will help. I think there’s an issue with timing though because they all require you to submit applications which then get referred to an approval body. And so I think you have to know what you want, and have the time to be able to submit your application. And then obviously for a major works you need to get the builders in, so that can all take a very long time. And for a lot of people that means, as I say, going to some kind of interim institution between hospital and home and I really didn’t want to do that, because, as I said, I’d been in hospital for 15 months and I think everybody felt that it was important that I went home, and didn’t spend any more time in institutions.