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David William Jones

In conversation with Simon Beard

 

My life has had to change in many ways since I was diagnosed with the brain tumour seven years ago. I was working full time for MIND, which is a mental health charity, and I was having some trouble remembering things. So I went to the doctor and had a check up and even went to have tests at the Radcliffe infirmary, but they said that I was all right and that I was just a bit stressed. I found that hard to believe though because I couldn’t remember things from one day to the next, even how to turn the oven on and things like that. I felt, ‘well, I know I’m not the world's best in the kitchen but I thought I could do at least that’. However, life continued until I started to experience difficulty at work. They interpreted my behaviour as showing that I just didn’t care and so, rather sadly, we ended up parting company. I thought that I did want to be there but I guess that from the outside I wasn’t doing that good a job.

I then worked for myself cleaning windows because I knew I wouldn’t have the energy to do a full time job. But after about six months of that, working two or three hours a day at most, I started falling over, and then I was diagnosed with this vascular brain tumour. That was about two months before it actually haemorrhaged. They knew they where going to have to operate but unfortunately it haemorrhaged before they did and they had to do a bigger operation. Then they couldn’t do it all in one go and so they had to do an even bigger operation a year and a half later. This has left me with epilepsy, which is largely controlled, but the fact that it’s only controlled means that there is an ongoing situation of unknown. I’m actually currently on high level disability care. So round my neck I have my medical requirements because part of my epilepsy is actually status epilepticus, which is very dangerous and you require intensive care.

I’ve been helped enormously by a number of surrounding influences which I regard as a very good template for living generally. Friends, stability in geographic location and interests, have given me the security that I needed. When I asked my neurosurgeon what I can do to help he said, ‘well, what you need is good food, fresh air and gentle exercise’. I said, ‘well, that’s good because that’s what it said on the advertisement for our allotments’. This has meant that I haven’t had to change too much and can still live a lot of the life I want and know I am doing myself good.

So although my life has changed in many ways in other ways it hasn’t changed at all. I’m still married, we still live in the same house, we’ve still got two children who come and go, my hobbies are largely the same too, I still practice yoga to a certain extent, belong to a Zen group and enjoy following sport. I’m also still interested in people generally. The difficulty is that I cannot think in the same way about what I would like to do. Maybe one day I will be able to work part time but my GP has said that I will never be able to work full time so that has been seven years that I haven’t worked at all and that’s a long time.

Another thing that I had to change were some of the fairly traditional expectations of a married couple. I haven’t travelled out of the UK and I’ve only been to London once. Jan, my wife, has had to do her own travelling really, often with her sister, but it’s not what we would have chosen. Financially we have had some trouble, though we are fortunate at the moment that things are reasonable. The benefit system generally does not allow for long term illness in the sense that it provides a nominal amount but it does not make an allowance for your mortgage or maintenance for your house, so there are some financial problems, but nothing too serious.

Two of our children died when they where young, which has had quite a significant effect on me, and which taught me about the dark places and really how low you can go. That really prepared me for a lot of the trials I’ve had in the last seven years, to spot the suicidal tendencies within myself.

I would say that until this last year I haven’t had the cognitive ability to comprehend what happened to me, so in a way that protected me from the situation. At times there have been difficulties. I had much more trouble dealing with life after the second operation. When I went back to the hospital they said that they were expecting trouble due to the area of the brain that they had to work on, which was near the emotional centre of the brain. So they weren’t surprised that I was getting outbursts of irrational behaviour, I was getting very angry and upset about things. I would say that there is still some of that. This is where it gets very tricky because you're into neurophysiology. I have had half a dozen sessions with one of the psychologists at the Radcliffe infirmary and I’ve been given help and cognitive behavioural therapy, which is the way they approach these problems now. However, before they allowed me to have that they wanted me to have anti depressants. I had the feeling that this wouldn’t work, and I didn’t want them, but in the end I took them, and after a month of being on them I felt a little strange and then I had a seizure. So they had actually interacted with my anticonvulsants to achieve the worst possible result!

If I have a difficulty now it’s the loneliness that I feel because I can’t find anyone to talk to. If you have a heart attack, then you come out of the John Radcliffe and there’s a support group to talk to. And I believe some of the symptoms that you experience, the panic attacks  and this and that are fairly common. However, it’s different with a brain operation and certainly with the second one that I had, which was experimental. They had gone into a part of the brain that they hadn’t done before and did an operation that they hadn’t done, so I was a guinea pig really. They watch me and then they take it from there. They’re writing notes and making up the story according to my behaviour. It’s a very lonely place to be.  

I think that if I could find somebody who had experiences like mine then it would help. There is a support group, which is run out of Harvard in the States, for people who have had an arteriole venous malformation like I had. It’s just some small defect when the brain is forming, and it grows throughout your life. Your arteries and veins are tangled up in a mess and you’re unaware of it, unless you have had a scan, until it haemorrhages –  normally in mid life.

I belong to a chat group which I used to activate it much more, I used it quite regularly, and talked through my situation, for the first two or three years after the operation. However, there are two problems that I’ve found with it. One is that it is on the internet, and I find that I’m much better with people face to face. I’ve never been very good unless I am face to face with somebody and understanding how I am coming across. That’s a classic communication problem, eighty percent of it is body language rather then the words we say. The second problem is that with the brain our experiences are just very different. I thought that there was someone in Australia who seemed to understand me, but then I said something that seemed to upset her, and then it’s suddenly broken down, this level of understanding that you thought you had.

The loneliness has become more acute as my cognitive abilities have recovered. My understanding of the situation and the fact that it’s very unlikely to change has made it worse. My doctor is very clear that I’ll always have to take anticonvulsants because there are basically just too many bits in my brain, clips and platinum coils and scar tissue and various other things. This last year has been one of the most difficult, and yet from the outside people might think that I’ve coped with it better then before. I think I’ve found the experience of stillness, and becoming at peace, very helpful. I was keen on the Zen before, and that was one of the main things that I lost and found myself unable to practise for the last five and a half years. However, I’m now able to get back into my practice, and that’s quite demanding physically, but I’m finding that helpful, in ways that I can’t really explain to you. That’s the nature of Zen, it’s not really word based, it’s an experience-based discipline. I am also a Quaker which has been good for the stillness part.

***

I hadn’t had a seizure since January ’03, two and a half years ago, which is quite a long time and my daughter has had to go to Florence because she is doing an Italian degree. I thought, ‘well, maybe you know, I could get a plane’, even though I have hardly travelled anywhere I suddenly began to think that maybe I could. However, I had another seizure then and now I’ve lost my confidence. I don’t even know if it’s helpful for me to contemplate going really. I don’t think it particularly helps my wife. She’ll want to go and visit our daughter at some stage and I think that if she thinks, ‘well, if this suits Dave, perhaps we could go together’ then it will prevent her from going when she wants. I think it might be better if I just say ‘no, I’m not going, I might go one day in ten years time but I don’t think I’m ready for it at the moment’. Then she becomes free. I think that if I can make clear decisions, that will help Jan to live her life. I know it must be terribly difficult to be close to somebody and observing all this. I can’t imagine what it must be like to have actually seen the process, I was in intensive care in the Radcliffe infirmary and I must have looked absolutely dreadful. Then, of course, the second operation was even worse as we were being told that this was experimental, they didn’t know what would happen, I might be in a wheelchair… and I mean I worry when she gets a cold!

I don’t feel guilty though, I’ve never felt much guilt feeling about anything. I feel sorry for her and I want to sympathise with situations, as far as possible. That’s another thing I think that’s come home to me, is that if you can simplify life, whatever it is, then that helps. It’s one of the outcomes of Zen and certainly one of the aspects of Quaker lifestyles and aspirations to live simply.

I probably fear less now then I did. I think that when you have a situation where you have been close to death then you do have a slightly different outlook on things. I think I’m a little more philosophical if you want to use that word in a general sense about situations. However, it’s very difficult to get into my head and see what things were like before. I have a saying that my life has been split into BO and AO, that’s time Before Operation and After operation, like BC and AD, because that’s how it feels.

***

There are many types of love in my life. There’s the compassionate love, the love that cares, which is the classic agape love of St Paul in the New Testament, which I would regard as the most important form of love, and there is the erotic type of love. I’ve always felt that the two were very necessary and that you needed them both. I mean I felt that the two were the basis of life really.

One thing that has changed about me since the operations is that I have become a Catholic. The reason for this is not because I particularly like their creeds or the Pope or anything like that, but it does give me the opportunity to express what I would call not quite an erotic love, but a devotional love for God. I’m not sure if that’s another sort of love, but I actually think that it falls within the erotic love, because I think the people who live in contemplation with all of this are actually in love with something, whether it’s Jesus or Mary or whatever. It clearly doesn’t have the physical expression of classic erotic love, but then a lot of people who can be in love after fifty years of marriage will not necessarily have that physical expression in the sense of consummation, or what’s normally assumed to be the love act.

So there is compassionate love. I guess you know as much about God as the next person but St Paul would definitely incorporate the compassionate love into the love of God. Jesus taught us the idea of the incarnation, and once you have that philosophy it doesn’t take much until you get to the idea that, like the Quaker view, there is something of God in all of us. The other sort of love has chemical reaction and you can see it, there are increases of this product or that product.

The friends I have I’ve largely made through religious or other groups that I’m part of. I used to go to an Anglican church and I still have some friends there, I have my Quaker friends, I have my allotment friends. The allotment is an ideal place to make friends, because you can have as much or as little as you want when you see somebody, it really needs analysing by sociologists in the sense of role modals.

Do I have enough? I think I’m lucky in that I do have enough. I tend to count the people who live near me as sort of my friends as well. I’ve got a particular problem at the moment and I went straight over the road to talk to a chap regarding my boiler and you know I feel he is my friend. And the guy who is mending the boiler, who has actually moved away to Marsdon, he’s my friend too, we actually sat and talked for half an hour about our families and what they’re doing, and what he’s doing. It’s not just professional.

I think that there are different levels of friendship. There is a certain level you can’t go to with any other human, only with yourself or with God or however you want to understand that. There are some friends who you can tell different sorts of things to but there is a sense in which I would talk to Jesus or Mary that I probably wouldn’t talk to anybody else. Whether there is anybody there or not is almost not the point, the point is that I am treating it as if there is. Therefore they are my friend.

Some people say that family is the most important thing in your life but I’m not totally convinced on that one and when people say family they are actually acting as very good friends because they have known you so well and I don’t really accept that it’s related to love. I think that it’s a friendship formed of the years rather then a family connection.

I am favoured in my life because I had a fairly stable upbringing with reasonable schooling, though probably a fairly typically middle class upbringing too. I am failed perhaps by a lack of money, a little bit. If I’d come from a wealthier family I think that some of the problems that I have had in the past few years would have been ironed out a little more easily. However, basically I feel more on the positive that I come from a very fortunate upbringing.

However, although I come from a typical background I don’t think that my behaviour was particularly typical at all. I was a very naughty boy generally, from about the age of eight to thirteen or fourteen. Just off the police record but certainly very naughty at school, I ended up having to report to the headmaster daily. There were only two of us who managed this distinction, as this was a strict grammar school. Then I went off hitch hiking in my late teens and doing some fairly wild things, but nothing too much.

It was all an adventurous spirit really, not rebellion. I think that there was a point where there was a big problem because they made me repeat the last year of junior school. Now the first time that I did it I was top of the class, but then because of my age I had to do the year again before I could take the eleven plus. For some reason I must have started the whole thing early, though I don’t know why. This did not sit well with me because I was kicking my heels and so really my academic enthusiasm started going down as I was more interested in larking about and impressing the girls. I think that if there was a problem, a weakness in my upbringing, it was at that point that I should have gone to a school that continued to challenge me academically instead of just doing the same thing again. That year I came ninth out of thirty, so it showed.

After my degree I tried the traditional role, I worked for Oxfam for three months and then they made me redundant without explaining why, it did happen in those days, so I thought, 'well sod it, I’ll go and do what interests me'. I was interested in food production during the course of my degree, so I went off and worked on farms for five years and then I worked as an agricultural mechanic for five years, and that was my twenties! You could put it as a rebellion but I wasn’t trying to prove anything to anybody, I was just doing what I wanted. It wasn’t really the done thing in those days, or not for a married man anyway, but Jan was very understanding.

I think that I benefited from that. The thing that I noticed very acutely, and this is a very important thing, is that I had this great sense after the first operation –  even though I wasn’t aware what was going to happen –  that I knew in my heart that I’d done the work that I wanted to do. If I could never go back to work again at least I knew that I’d already done what I wanted. For so many people I’ve observed they go through life, and they are going to do something when they retire, ‘when I retire I’m going to travel’, or whatever it is, and I think, ‘well, if only you knew, if only you knew’. Do what you want now, love God and do what you want, that would be my philosophy, though I do think the first one is rather important.

October 2005