paleo paleo paleo

really looking forward to paleo, lineup is unexpectedly exciting (gentlemen, people of the herb, Ladysmith…,foals,dr oizo,NTM,NERd etc) 🙂

and then hopefully onto France afterwards, looking for a good place with accessibility in central/NE if anyone knows of one.

swh

I met Professor Hawking yesterday, obviously truly incredible man. I enjoyed the time spent with him and we were treated by Lucy and Joan to a wonderful meal. It was an honour.

Interview transcription

Tom Nabarro

So Tom just to, I’ve explained to you, you’ve seen the information sheets on the book I’m doing, and just to make sure if you could say you’re happy and you’ve consented to doing this interview.

Yup, I’m happy to consent.

Good, thank you very much the formalities over with. And just to start off by saying a little about yourself.

OK, well, I, I about the accident specifically?

No, about you, about you really.

I’m an electronic engineer, I work at a company owned by Siemens, you know, telecomms work, I live with my girlfriend Ellen and we’ve been together for six years and prior to the accident I was an avid sportsman, snowboarding and football, I still enjoy watching football and I have an interest in IT related pursuits.

OK, fine, thanks, coming to the accident itself, what is your recollection about that.

So my recollection of the accident, prior to the accident, I remember, it was my first day in Bulgaria, I was, we’d had a weekend in Bulgaria visiting friends of Ellen’s, Ellen was studying at the Academy of Art in Sophia and the day of the accident was the first day where Ellen had been at college while I had been there, and so I travelled up the mountains to snowboard.

On your own?

On my own, yup, I travelled in the bus first and then the tram, which went up the mountains which was spectacular, a spectacular journey, from the green valley up to the mountains and then I remember arriving up the top and then, I don’t remember it but I spent a good two to three hours snowboarding.

You don’t remember that?

I don’t remember it, no, I remember, the last thing I remember was taking a photograph of a radar dome at the top of the mountain, I was intrigued by all the military warning, don’t proceed otherwise you’ll be shot. And so I took a picture of this radar dome and that was the last thing that I remember and then I remember lying on my back looking at the sky with a feeling of fluid in the back of my throat, which was probably blood and probably fluid from the lungs and not being able to move, knowing it was pretty serious and at that point I remember having the reflection of a feeling where I was in the air and knowing something wrong was happening.

So you had a very strong sensation that something was wrong?

Yea, It was always, it was a flash back at the time of being in the air, as and from the jump and knowing that I wasn’t going to land straight, and thinking something bad was going to happen and then, and that was a sort of flashback as I was lying on my back. I remember looking at the clouds and feeling quite peaceful. And then sort of faded off and then I had a sensation of floating above my body and looking down and seeing paramedics working on me, who were the mountain rescue team and they were doing CPR. I remember floating in a circular motion, rotating around, the view from the sky and that was quite a profound feeling. And then, then there was a darkness and a tunnel sensation and it was as though I was at a bottom of a well and I couldn’t, I couldn’t get out and then there was just darkness and then proceeded along a series of hallucinogenic dreams, basically which involved stories of being kidnapped in Bulgaria and some drug baron taking me away and locking me up in a cell and lots of very strange, strange stories, I don’t know if you want to go into that?

0:05:26

Don’t need to go into the detail, what did you think was happening, you thought they were actually happening at the time?

Yea, they were 100% real, they were very vivid, very horrible really.

This is after treatment from the paramedics or during it?

This was afterwards, this was for a long period, about three weeks of kind of drug induced coma basically.

So this was drug induced, you are pretty sure about that?

Yea. And that was a long time, and they felt, they serious felt like that, it was a year’s worth of my life, it felt like a long long period.

And during that time you were actually in a drug induced coma for as long as three weeks, was it?

I think so, on and off, I mean there were periods when I was conscious, or semiconscious because I talked to my relatives during those times, but it was obviously still very drug induced, only just conscious. And in those dreams there were members of the family were present.

A pretty unpleasant experience?

Horrible.

And in terms of what you sort of knew at the time, what did you know that had happened?

I was pretty well aware of what had happened, because within the dreams I was aware of the situation, I was paralysed in the dreams, I had damaged lungs, I knew that my neck was broken, I was aware of what was going on, probably due to Mum and Dad and Ellen being very vocal about what was going on and being very aware of what was going on and having discussions about the surgery with me during the time.

Was that important in terms of…

Absolutely, yea, very important, I think they have always been aware about what’s going on and what you can understand and what’s going to happen in the future, you can prepare yourself for the changes in life which are going to have to take place.

So that was in your mind?

Yea.

And it was somewhat distressing, can you remember?

Not particularly, it was a very, it was a life changing event, and the whole process was part of the event including the dreams, including the time in Bulgaria which wasn’t nice including the suffering of relatives, which was all very real, and its all things which we’ve learnt and progressed from, so they are all important parts of your life and therefore I don’t find it too distressing thinking about it, they’re learning points and challenges which once you’ve overcome make you stronger in that sense, its not too much of a regrettable thought, thinking about them, its only a reflection of how hard the times were.

Those were pretty hard times. What about the learning points, can you say something more, that’s an interesting point to me that there are some things one can learn from and other times it seems impossible the difficulties, I just wondered what it was like for you?

There are different, there are two periods, I can divide the learning periods into two times, one was the period of the traumatic event and dealing with the immediate suffering, condition, change and pain, and then the other learning period was the post, post operation, post, post immediate effects, where you are coming to terms with what’s happened and you’re trying to find ways to live in your new situation and the immediate period after the accident the learning points I experienced then were more about how to deal with immediate pain, how to try and block off the sensation of pain or deal with the intense critical, the intense, the acute pain at the time and to deal with the lack of communications, being on a ventilator and not being able to speak to people to deal with the long, long waiting really, being unable to speak and communicate and unable to sleep occasionally and the constant staring at the ceiling and not being able to move. When you first experience those, the inability or the lack of mobility its quite challenging because you’re use to being in complete control and dealing with the lack of control was the immediate, first learning point really, the lack of control and the pain and just being able to suffer them without going into a complete mental panic really. Try to relax.

0:11:12

Where was the pain?

Everywhere really, obviously I was paralysed from the neck down at that period  pretty much, there was not much sensation below the neck, but the acute sense of loss, the loss of sensation was almost like a pain, not being able to feel was huge void in sensation obviously, and the contrast from being able to feel everything to not being able to feel everything was very acute at the beginning stages and although I wasn’t specifically in pain, its very hard to, a constant sense of loss within the brain but the main pain was the, actual acute pain was in the head and neck, recovering from the surgery.

Was that a pain induced by the surgery itself and the consequences of that?

Yes, muscle tissue and broken muscle tissue trying to regrow, basically and obviously scar tissue. Then the pain was obviously was not acute when the morphine was kicking in or the stronger painkillers were in affect, but they weren’t always, that was when real acute pain was hard to deal with. And the waiting was very difficult, I ended up really relying on visits from relatives which weren’t very frequent at the beginning, because it was a military hospital in Bulgaria and the visiting times were very stringent. And I remember waiting for the visits and that was hard, me being there on my own.

…Inactivity and nothing happened…

Inactivity and in ability to communicate with the Bulgarian nurses, just staring at the ceiling.

So very very tough time. Now that was, when you said you were learning to cope with the pain, what did you learn and how did you manage that? Was it some mental activity, something that you thought?

Yea, I think, trying to distract yourself, really trying to think of other more pleasant experiences, trying to distract myself with thoughts of sporting activities, something that was a constant distraction, when you try, when I try to imagine something which would distract me in a constant way, its something that involved activity, so I thought, if I imagined the activity of snowboarding, the activity of running and the way you envisage doing those activities, its actually constant, it’s a constant process so that’s a good way to distract yourself in a constant way, typically the pain, the acuteness of pain usually goes in waves, you get an acute pain sensation and that sensation will last a few minutes or up to ten minutes or so and then ease off a little bit and its those initial periods of really acute pain where you’ve got to try and distract yourself otherwise you end up getting in a panic, a panic state and I was just trying to, trying to create diversions which would, constantly active, constantly distract my brain for short periods, otherwise its breathing, meditation, breathing exercises, although not very ease when you’re on a ventilator.

0:15:43

I imagine not.

Even focusing on breathing, because that is another constant activity which allows your brain to focus on something for consecutive periods of time.

So that was one challenge which you found ways of dealing with under the circumstances what about other learning points coming perhaps further on?

Further on, yea, looking at the times where, say a period of weaning off the ventilator, that was an interesting one, I mean, the periods initially in the hospital after Bulgaria where we were really looking into the medical procedures necessary to come off the ventilator to proceed into rehab, those are very captivating times, there is a lot of thought necessary and that was a very welcome distraction, but once those periods of immediate medical procedures and planning lessened off then was the time to really deal with the adjustments, the new situation, the adjustment to the idea of not being able to do sport any more, and not being able to do physical activities, that was a very difficult, difficult part obviously.

That was a huge loss because you said earlier that you were a very …

Absolutely, yea, things like dancing, I was an avid clubber, avid person who enjoyed dancing a lot, a person who enjoyed sport a lot and those are two of the biggest parts of me, two very big parts of my life and coming to the idea that those are no longer going to be possible was very difficult, and a lot of time was spent in emotional distress with family members.

… talking about it.

Talking about it and just to really get over that fact, I spent a lot of time with Mum, with Mum talking about it and with my girlfriend Ellen and with my Dad, and my brother and sister to a slightly lesser extent.

Was there anything that was particularly helpful in terms of, for you, something that you thought, something that people said?

I think those things that have been the hardest things to deal with and I don’t think anything really did help, I think, those just things you try really hard and will never go away, so I don’t think anything that anyone said has been particularly helpful.

… so the last…

Those are still very difficult to deal with, I miss my sport and I miss my dancing, and I miss those things that are never going to really come back, although most things have been helped by talking to people, those things haven’t really, nothing has helped that sense of loss. And the, another learning process I think has been the transition from being on a ventilator to coming off a ventilator, once you’re use to artificial breathing your subconscious reflex to breath has been destroyed and that is what enables the ventilator to breath for you, to perform the activity and to artificially inflate and deflate your lungs. When the, when its been ascertained that you have the muscle control to breath again, they do a process which they call weaning to take you off the ventilator, this involves you consciously stimulating your breathing muscles, at first for very very short periods of time, to take air into your lungs and to expire, and this is, at first a fully conscious exercise and you do it for a period of a minute or so at a time, and you build it up over time, three or four times a day, to two hours, you now, 10 minutes, 20 minutes, 30 minutes, 50 minutes, an hour, 2 hours, 4 hours and then for half a day and then a whole day and eventually a day and night. The times you are not consciously breathing you’re on a ventilator and the transition from this transition requires the development of your subconscious reflex and when you start getting use to having you stop consciously breathing and you subconscious breathing kicks in. Then going back to being on the ventilator is very difficult, because you’re subconsciously breathing and then you have to subconsciously breathing and go back on the ventilator, that was a very interesting learning process because it required mainly patience and suppression of a subconscious reflex which is another very difficult task which requires a lot of conscious attention.

0:21:31

Was this happening over here rather than in Bulgaria?

This was in Stoke Manderville.

So that was a major tasks for you to go through?

And that is something that I don’t think you can really imagine or experience lessens unless you have to do it yourself because its something that, throughout your life you’ve never, you’ve always had that subconscious reflex for breathing, you’ve never not had it, so actually having that destroyed and then to relearn it which is completely new, its something that I have never experienced before.

And now, is that now automatic?

Yea, its now automatic, is now the same as it was prior to it, I think, I think as a learning experience it was just something new its something that I had never experienced before. I don’t know whether I’ve gained anything in terms of conscious control, or any benefit from it, it was just a very new experience.

OK, moving on from that what about the, when we were exchanging e-mails we were talking about practicalities and emotional things, I suppose, particularly emotional because being a psychologist that’s the area that I would be interested in, maybe you could say something about the practicalities as well, because presumably there were a lot of things to have got through to get you to where you are now.

Absolutely, in the first, the first set of practicalities to be learnt were in the hospital where they teach you about verbal independence, as they call it, you obviously have to instruct people to do what you’re body would normally do, and there are various interesting attitudes towards personal care, some, some personal care as I said, I have said I am your arms and legs and you need to instruct me what to do and I will do what you want, in rehab itself they teach you about dealing with your own health management, because typically there aren’t very many people who are fully aware of the bodily needs of a spinal board injury and therefore you have to be able to self diagnose in the event that you are in a medical emergency or at a hospital where people aren’t aware of your condition, you need to be able to instruct them and you also need to be able to instruct your carers and people around you in various ways.

It’s a whole new relearning isn’t it for you?

Absolutely. A whole new appreciation of bodily function and due to loss of bodily automation processes, you have to then do those processes in an artificial manner, things like bladder control, skin care, making sure you don’t, you do things like pressure relief, relive parts of your body that have pressure for long periods of time which the body would normally do automatically. So those are coping strategies which we learnt in rehab and then post rehab dealing with personal care, that’s been a big one, having someone 24 hour live in care, its very difficult having a constant presence, which is not mandatory, not chosen and things like dealing with personal relationships when you have a personal carer around it can be difficult, it can be challenging, dealing with those personal assistant relationship is more like choosing a partner than choosing a friend, because you are constantly with each other, whether you like it or not, you have to be able to deal with each others moods and be able to communicate efficiently and then developing those relationships is very difficult, so that’s one of the coping strategy that needs to be developed.

0:26:12

Then the other one is dealing with friends and relatives post, post accident in your new situation with obviously different set of capabilities, and a change in social environment, dealing with friends post injury was interesting, I typically found that the friends I’ve know for the longest are the hardest to adjust to my situation because they’ve known me for the longest and been use to me in my prior state for the longest.

You’ve talked about those challenges, I just wondered if you could say something about the difficulties of meeting the challenge, for example we’ve talked about those who care, having to choose a personal assistant, I mean, what was particularly difficult about that?

Personal care is still probably one of the most challenging aspects of life at the moment and the difficulties involved are continuity, typically it takes about a month or two to adjust to dealing with a new PA and to be able to get them to understand the way, my routines and the way I like things to be done and the tact that I require in their behaviour, once that’s learnt it’s a huge investment and typically in the care industry they tend to change over between, the job expectancy is around 3-6 month before they move on, because its not very well paid and typically its done as an interim job, between travelling or …

So one problem for you is that there is…

The continuity is a huge challenge, and the difficulty is getting those people, getting the agency to try get PAs who are willing to do regular work and also another huge challenge is trying, is patience and not losing my temper and irritability, obviously everyone gets moods and typically the frustrations is to do with when people don’t understand you and you’re in a bad mood, and that can quite often lead to a loss of temper.

Sounds like you’ve got quite a lot of a) understanding of yourself  involved in that and understanding of other people but also an understanding of how to control, if that’s the right word, your emotions, most of us don’t think about that very much, so sometimes we don’t control our emotions at all, you having to think about that almost constantly really.

Absolutely, because I don’t have the ability to be alone a lot of the time, typically a lot of people coping strategy with anger management need to vent it when they’re alone, to go and have alone time, to be able to relax on their on and do things which can suppress, not suppress, but dissipate their anger over a short period of time when they’re alone and relaxing and typically I can’t always do that, I can do that for short periods of time but there is always going to be things I need and there is always going to be a need to be someone close by in case of an emergency, so typically I don’t have those extended periods of alone time where I can dissipate my anger and therefore I need to find other ways of dealing with, with it.

0:30:36

What other ways do you have?

Music, music is a very musical tool for me, and also work, mental processes, typically my work is problem solving in the programme based work and that involves a lot of logical based thinking and I find if I can focus on a logical problem for a period of time that can offset some anger or some pent up feelings.

So a distraction or is it…

I wouldn’t say, I’d say that’s more of a mental process working out, I also enjoy massage, get to reduce some tension and even small periods of meditation, just with my eyes closed, just focusing on breathing that tends to dissipate anger.

Are these things that you have found for yourself or has someone else told you about?

These are mostly things that I have found for myself since the accident really, I spend a lot of time when I’ve been moved around with manhandling, or dressing or showering, things which I am not actively involved in, what’s happening with me, personal care, and this is why its important to have good PAs because they can do things, like personal care and personal management without involving, typically that is very important for me because if they can do things without my involvement, like dressing or washing, I don’t need to instruct them because they know my routine well, then I can focus on mental activity and typically that is a lot of time that I spend relaxing, sounds slightly strange, you know, you’re physically being moved around, and physically having actions performed on you, but I particularly use those times to close my eyes, relax, focus on breathing, or think through problems or plan the day,  and those are, kind of, relaxing times, although it sounds strange are really important periods of the day because the rest of the day I am constantly active, mentally on focussing on what I’m doing, whether I’m instructing people, whether its using voice activation on the computer doing work, its always involving direct mental activity, vocal instruction, so those periods in the day where I’m not having to vocal instruct are periods in the day where I can think about other things and relax.

And the relaxation happens, does it, you feel relaxation, I mean, not all the time, but you can do that, it’s a definite relaxing period?

Yea, and its because I’m not focusing on time limited activities, so I am not thinking of things that I have to do during the day, I’m not thinking about how fast I’m doing something, I am just doing hang out periods.

Is that a sort of way of separating your mind from your body, so to speak, that sounds rather crude?

Exactly, that is exactly it, you’re completely detached because you are not having to interact with the outside world in those time, well I’m not because my body, my sensations are detached, so typically, say I’m being washed, dressed, I can’t feel what’s going on anyway, so there is no real stimuli from that, really its just processing thoughts inetrnally.

We’ve gone on to this in some degree already, emotional coping really and you’ve mentioned anger, are there any other emotions which are difficult that you’ve managed to deal with?

Yea, I don’t know how much I’ve touched on, frustration, but frustration is a large one.

Is this frustration at your condition and the difficulties, that you can’t do things.

Yea, I suppose you can compare it with regret or remorse, I suppose, and I try not to get bitter, its very easy when your limited, restricted and you can’t do things that you see other people doing or that you can’t do things that you use to do, its very easy to feel bitter at the world or jealous of other people and I try not to let those emotions, not to let those emotions to take hold, they are not healthy emotions and they don’t lead to any benefit for anyone:

0:35:40

So is this something that you are doing, talking yourself through it, if you were to experience a strong sense of regret or jealousy would you then try and talk yourself through it or what would be some of the strategy you would use?

I mean in terms of bitterness and jealousy I mean those are emotions that can sort of pre-empt, I think, for example if I was, I was in Sweden recently doing a ski course, a back up,

I read about that.

That was great fun, a lot of people asked about my emotions and in relation to that, and when I was up in the mountains, seeing people snowboarding, their kit going up the mountain, which was stuff I enjoyed greatly, before I feel jealousy I associate myself with what the actions they’re about to do, and when I think those thoughts I immediately regret that I can’t do it any more, before that moves onto being jealous of the fact that they are doing it, you say to yourself, I can’t do it any more but at least I’m here to see them, you know you take some benefit in the fact, the fact that you are there to still see them, the fact that you are still alive, you didn’t die in the accident, or the fact that you’ve still got love, you still enjoy a lot of other things in life, those are things, you just remind yourself, oh I’ve still got that, you don’t need to feel jealous.

Does that work?

That works, that works all the time, I don’t think I do suffer from jealousy too much, you get the occasional regret feeling and then you say, ah, at least they’re enjoying it anyway, you can stop yourself from feeling bitter about those things.

Is there any experience of guilt at all? I’m not saying there should be.

I understand completely, I think I felt guilty at periods about my Mum, my Mum suffered a lot, emotional distress, as did most family members.

Carer came in

0:38:49

So Mum obviously experienced a lot of distress and I got guilty for letting her down in a way, not for being reckless, I think I was always reckless and took risks but, you know, felt guilty for having put her through all the trauma, as with my girlfriend, but again guilt is not a very productive emotion and so I try to feel guilty as little as possible, I talk to Mum, if I feel guilty I talk to her about my emotions and I spend a lot of time talking to her after the accident about what happened and asked if she felt angry at me or her emotions with respect of the accident and I know she spent a lot of time worrying about  us skiing and snowboarding and certainly for her fears to come true that was obviously very distressful for her, and that I felt guilty for, but at the end of the day if , no-one can live their life bubble wrapped, the risks you take define who you are, and the extent to which you seek adrenaline, seek exhilaration, that is part of who you are and I don’t think suppressing is healthy for any person. I think, obviously limiting stupid risked is important but I don’t think sport risks, risks that I took were always stupid, I don’t think that they were often stupid, really stupid, I always tried to weigh up the benefits and risks before taking the risks and, I think, the accident was more a mistake and an effect of, a considered risk, not an unconsidered risk and therefore I don’t think I have too much to feel guilty for. I feel sorry more, I feel like it was, like it was a bad thing to have put my relatives and friends and people, loved ones through the distress, but I don’t necessarily feel a lot of guilt for what I’ve done, more just regret that it happened.

0:41:43

You mentioned relationships with your mother and your partner, how have they changed? I mean what’s happened there?

Well, the obvious one is obviously the relationship with my girlfriend, Ellen and typically through severe high level spinal cord injury you don’t see many relationships last, unfortunately, in hospital a number of men and women, typically more men tend to break their necks, but there are a number of people who lost their girlfriends, partners through the process of the trauma and its very difficult to deal with from a loved one perspective, the person you love suffers so much, its very stressful, probably one of the hardest thing to get through by losing someone you love because the amount of pain and the amount of near death experiences have a, are very difficult to deal with, I sometimes feel like Ellen went through more of my suffering than I do, I did, because she was probably more conscious through most of the suffering period. She had a horrible time, they spent a lot of time in Bulgaria thinking I wasn’t going to survive, you have doctors saying that and I had three cardiac arrests and things like that, so that is obviously the feeling of almost immediate loss or pending loss, you know, someone you love is hard to bear.

And made it difficult for someone to go through all that and still be with that person is a testament to how strong the relationship was before and going through those challenges and they’ve made the bond incredible strong, we have an amazingly healthy relationship, and a much greater understanding of each other than prior to the accident I would think. I think prior to the accident we did have a very strong relationship, even then, but going through the processes of communication when no-one else could understand me, only Ellen could because I was unable to breath, unable to speak because of the ventilator and could only lip, mouth words, and typically my Mum, bother and father and sister couldn’t understand me and Ellen could, so then she was my link to the outside world, a strange unique situation. And then go through all the despair of not being able to move and not being all the things that I wanted to, the idea of life in a paralysed situation, extended disability, all those emotions I shared openly with her, try not to be open because you don’t, in periods of depression you don’t want to bring the one who supports you down because if they’re down as well they can’t support you. Its not fair to burden someone you love with all your despair, you have to try and deal with some of it yourself and not try and burden someone else with all of it, because, you know, people are only so strong they can’t take infinite amounts of burden from someone.

In terms of your relationship with Ellen, that’s been much strengthened by it?

0:46:01

Yes, hugely strengthened, we have an incredibly strong relationship now, I don’t think anyone can really see that, can really understand that, I can’t vocalise it, I can try, I can only vocalise the extent how much we’ve been through together and I think people who have been through that kind of trouble, trauma together and survived it I think that they are in a very unique position. I think she’s grown as a person, as have I through the processes, of dealing with suffering really, trying to lean on each other and look on the bright side, whatever.

You are saying that is something positive that has come out of something pretty awful, your relationships been strengthened, it might have been strengthened …

Absolutely we will always, we talk sometimes about trying to imagine what things would be like if the accident hadn’t happened, its sort of paradoxical, a thought process really, traumatic events like that change your life completely, they’re not, they don’t even resemble the lives we had before, so trying to imagine what things would be like if it hadn’t happened is impossible, because its three years on and so much, so many different things would have happened, we may not be together, Ellen sometimes says she doesn’t think we’d have been together if the accident hadn’t have happened, slightly distressing, a little bit distressing, she must have had her reasons, yes, but in that sense a hugely positive thing has happened from a very negative traumatic accident.

All relationships, don’t they go through that and one has this sort of idealised view of a relationship, the assumption there aren’t the ups and downs and difficulties in any relationship.

In any relationship there are, and actually, I think, we can see that the relationship is stronger, or at least very different because we don’t, we still have arguments, not overly frequently but as you say ups and downs and difficulties in relationships as a young hot blooded people we have our arguments, we don’t have as many nowadays and they are definitely a lot less now, they tend to be more relaxed arguments, yes, so things have changed, I mean its changed us as people completely, typically both very … I can speak for myself and say I’m very much more patient, my patients has developed at an expediential rate because of the dependency on other people and the understanding that the tact with which I ask for things and dealing with the fact that not everyone, people aren’t robots, you need to manage your requests, you need to try to ask people what is reasonable and not ask too much and sometimes forgo your needs with respect to somebody else’s relations and timing and strength for exhaustion and to realise that sometimes even if you need something it maybe better to wait if you can and to ask later.

Ellen enters

0:50:15

It’s learning about ways to be tactful about asking for thing so you don’t exhaust your resources.

And those are the things that you have learnt, do you thing that is because you’ve are you and are that sort of person or that you’d have to learn things that you might not have done?

Yea, I wouldn’t definitely wouldn’t have learnt this and if I wasn’t in this situation typically I never thought of myself as ever wanting to progress in my career as a manager or a project manager in any way a people manager and this situation has forced me to be a people manager with regards to care and I think that has helped with my work for one, and I don’t think that is something I would have developed, at least early in my life and those sorts of skills if I wasn’t in this situation. It is also critical, I wouldn’t be able to live my life sufficient in the way that I am managing at the moment if I hadn’t developed those skills, people wouldn’t want to work with me and wouldn’t want to be with me, if I hadn’t developed an understanding how to ask for things and how not to be, how to be very considerate with the way you ask for things.

But I guess, not everybody is going to learn that to the extent, some people are not going to be like that, it depends so much on the individual.

I think there are trade offs, I’ve had to hone those skills and manage people very carefully because, because I require a lot out of people who work with me, try not to require a lot Ellen because she’s my partner I have to be careful not to treat her as a PA and its sometimes, although it seems silly that its difficult, it is difficult to manage relationships, different types of relationships definitely, typically I get use to being able to instruct PAs to do things that I require and then you have to be very careful not to treat other people like that, because the PAs are employed to be, to help you to, to enable you to do daily living, people who are close to you are not, they’re people who you have to care about, you have to not require them to do things for you all the time, but sometimes you are going to have them to do things, if you want to be alone with them and those are very difficult lines, difficult paths to tread. I have distracted myself from what I was going to say.

I asked the question about how other people might be because it seems to reflect, you seem to be reflecting a lot on what you can and cannot do.

I was talking about trade off, I remember, because I, because I want to do a lot with my life I then require a lot from people who work with me. But I wouldn’t have to manage people as carefully if I didn’t do as much with my life, so if I was less active then I could spend less time thinking about how I was going to manage people, how I was going to consider the way in which I interact, because typically w a lot of people with these disabilities aren’t as active as me and can afford to be less demanding with the people who work with them, and then you can be less careful in how you interact with people, so its that trade off.

I’ve lost my train of thought as well. I suppose, I guess, thinking ahead, maybe you don’t want to think ahead… is that what happened?

0:54:55

No, I like to think ahead, I tend to be preoccupied with immediate concerns a lot, but I always think of, I am always thinking of ways to improve my systems, the way I deal with care and the way I deal with employment and the way I deal with self management really, and I am constantly thinking of ways to improve, because there is always going to be room for improvement and at present its very evident because the systems aren’t working as well I would like and I am always thinking about future events, so for example, when, if I get married, if I have children, if I change jobs, all these things are very, potential things that could happen sooner or later and seeing things and planning for them far in advance. And things like, in fact carers are the more immediate things, carers obviously effect everything to do with my life and in the foreseeable future. And making sure the best care systems are in place and the most suitable care systems are in place for me is really important and the predominant factor is flexibility, because flexibility is needed for me to work, its needed for be to be able to go and be sociable whenever I like, and the more flexibility we can have with our care arrangement the more flexibility you can have with your day-to-day living and flexibility is typically the first thing, the thing that is lost when you are physically disabled, you can’t go and socialise whenever you want, you can’t go to whichever pub you want, everything has to be pre-planned. And therefore the more flexible your carer is the more flexible you can be and gain back some of that loss of flexibility in being physically disabled. I have people who are flexible around me and that’s what I am in constant discussion with and the carers and the care funding providers.

So you take a very active role in that?

That is something that I strive to be as active as possible and I try to get more active in the PA recruitment process and that’s the … I am currently trying to improve.

When you are thinking of those things and working them out, do you then keep a diary in some way and keep a record.

Initially I started keeping records of personal, personal administration, we’ll call it, because not work related, work related things I would have to keep in a log of that’s a work restriction, with regards to personal administration I keep records of documents, I don’t keep a daily diary of the actions, I tend, I use to do that, but I think, at the moment, I can keep track of what’s going on via e-mail threads, so e-mails is something that I use a lot, I keep archives of all my e-mails and typically I just search through my e-mail if I need to get records of formal discussions, and I’ve found its not really efficient for me to keep a diary of those person, administration processes. Going forward I may have more active involvement of kind of secretary, PA sort of thing.

0:59:21

About future events and looking forward, moving away from the kind of management processes aside, having children is a big thought, a big consideration, because obviously its going to be a very unique and very difficult process raising a child, so many physical, disabled situations, its not impossible, people do do it, but the idea of having live in carers and bringing up a child with not being able to hold it and all those kind of things which are emotionally quite taxing, the idea of not being able to hold your child but other things make up for those things, watch it grow up and have very avid facial interaction, that is probably what children rely on most as well as touch, touch from Ellen but the idea of having someone else hold your child … like that and the PA relationship, its quite an interesting idea, and that brings around the thought for I need for really, for having really, having really close control on recruitment for PAs.

So its just meeting you now, you’re doing a lot of thinking and that’s helpful?

Always, yea, I always need to prepare. Because as I say being physically disabled, everything is always about forward planning, nothing is ever sporadic.

So that is a major change presumable?

Yea, exactly.

For anyone.

That’s another, I suppose, the things I miss most was dancing and sport and flexibility I suppose.

If you suddenly decide you want to go out for a walk whatever, you can’t do that?

I get quite, something that does occasionally depress me is the idea when I’m out in London or in Oxford, we go to a club or we go to a gig or a restaurant, we see people out and about having a few drinks and just being, not really caring, people go out and they do what they want, they can go to a club if the fancy it, they can met someone and have a chat with them, stay at the bar, yea, those, the lack of flexibility to do things like that is very pertinent, I can’t go out with my fiends like I use to, just go be reckless, I’m back to taking risks.

Not necessarily risks…

… its flexibility, just going and doing what you want when you want, you know, that is quite difficult to deal with actually. But as I say you get some of that back by planning, planning it perfectly with regards to personal assistants, making sure that they are OK, because there are some small benefits that people don’t have, who don’t have PAs, and if I arrange it in such a way that I have a really good PA who comes to work and performs some secretarial duties or arrange bookings for me, then some of the overhead that comes for extra pre-planning, things that you wouldn’t normally do, some of those can be taken up by the extra help that you can have.

How often do you go to work?

I go two days a week and work from home one day a week, so it’s a 22½ hour week. Typically I do a few more hours than that to get the required amount of work done, because voice recognition is not a 100% efficient and obviously lose, there are various aspects of work that don’t, that are slightly different and it wouldn’t be the case if I was fable bodied, and I, typically I have less personal interaction with people at work, partly because I am only there 2 days a week, partly because I am not well when I am at work, we can’t have informal chats in coffee machine, we can’t just pop to someone’s desk and talk and I’d typically go to any conferences as I would otherwise, so those things effect work and also the use of purely voice recognition and lack of  being able to draw diagrams and take down notes and things like that do effect productivity, so typically I spend a few more hours a week of my own time trying to catch up.

There is no software around if you say draw a circle…

1:04:44

There is, there is lots of, there is a way of doing everything, I mean, typically with IT if I really wanted to be able to draw diagrams I could, there are various packages out there which you can do, in fact with voice recognition software you can do pretty much anything, it just takes a bit longer, and its just about working out ways you spend, way you use your time, typically I don’t feel, I haven’t felt yet like its worthwhile to find something to drawer diagrams, if I really need a diagram I’ll get a PA to do it or I’ll try and do something in a text based manner and talk in little circles and things like that, Microsoft Word or Visio which we use at work. But typically I haven’t found it worthwhile to invest my time in doing that because it takes a long time establishing those systems to do things and you have to really evaluate it if its really worthwhile, a bit like project management, you have to evaluate risks and evaluate benefits before you invest time in the making the new systems work. Anyway you don’t want millions and millions of different systems of software, because you tend to make things less portable, its kind of getting to specific groundwork, for example, if I’ve got millions of different scripts on my computer then transferring those to a new computer when this laptop dies then it’s a lot more time consuming, so the more portable, the more efficient I can keep things and if I limit the number of software packages and the number of scripts that I’ve used then it makes it more portable, so yea, all those considerations have to be taken into account when we think about new ways of doing things. But overall I think my efficiency on the computer is pretty good and I try to, my use the voice recognition has been developed quite well, so that I am quite efficient with that.

Just conscious of the time, we ought to perhaps bring it to and end. So what is the time……

I don’t know how much I rabbited on, I sort of meandered a bit an.

No, its fine I prefer it when people tell their story, that’s the whole purpose of it, what I do after this is put it on my computer and get it transcribed, I can also send it to you, if you want it, you may not want to listen.

How do you transcribe it?

I have a woman who transcribes it, she does it, I am not looking for word perfect accuracy, as long as she’s got it reasonable and it coincides with what was said, I look at the transcripts and read them through, annotate them and I take them and do things that are relevant to the book. I’m in the process of rethinking of how to start the book, because I want to write it in a certain sort of way that makes it readable to people, not something that is dry.

Too clinical

To clinical.

I just ask because my sister did a dissertation on relationships pre and post spinal injury and she had a huge amount of interview data, which she had to try and get transcribed, it took her a long time. She had someone working, she paid someone to do some of it, it was her that did most of it.

It’s a huge amount of work to transcribe, I thought at first I would do it myself, but I realised I was highly inefficient really and someone came forward who could do it for £10 an hour which seemed very reasonable charge, and its quick.

How many words per minute does she do typically?

I never asked her.

How much time does she do in an hour?

Roughly. I don’t know, I just get a bill and just pay it. It seems very reasonable for what the work involved.

That’s good.

That has worked out well.

I work a lot in voice recognition area and the, some of the technology is really coming along, doing automated voice with transcription, its still such a challenge with free speech, because typically when you are doing voice recognition yourself, the way you speak is a lot more focused on punctuation and … because you are doing things with a view to having a computer understand it. And when someone is bumbling along like I do,…

Let see how she copes, I don’t think you’re mumbling actually. I use the Dragon software.

Yes, like I do, I find it extremely irritating at times, because it fails to recognise something it should recognise and I have to stop myself swearing at it.

It doesn’t understand swearing either.

It doesn’t understand swearing, fortunately, yea, any way I’ll stop there, thank you very much for that.

The end