For all of my working life in nursing – over twenty years now – I’ve been involved, in one way or another, with the basic limits, the boundaries of life. Either in geriatric care (accompanying people who are coming to the end of their life’s journey), or with people suffering from such serious, complex, debilitating and restricting illness that their continued survival would rapidly be impossible without the comprehensive, continuous support of professional health workers (in my case, people in Persistent Vegetative States). Even in the little group of five children with whom I currently work, three are in a PVS.
It is an area where some very fundamental questions arise. What’s the basic point of life? What is tolerable, intolerable? Where do we draw the line, or can we draw any lines at all? When is a life not worth living any longer? What does “basic human dignity” mean?
Hard questions, questions for which I am ever more unwilling to offer comprehensive answers, or even any answer whatsoever. There are those who find such things in faith, or dogmas derived from faith (though most believers who actually work in this area – in my experience – aren’t big into dogmas), but many of us are not believers, or don’t find our motivation to continue actually doing this work in any kind of religious faith.
I suppose one of the basic things which keeps us at it (apart from the fact that we know how to do it and we need to earn a living) is the very practical experience that this is work which has to be done; done now, done immediately, done continuously. I think it is this daily experience which leads most of those of us who do this kind of thing to a reaction of genuine bewilderment when others praise us for it, you know, “I really admire you for the work you do…” that kind of thing. There is, I suppose, a kind of deep satisfaction in doing the kind of work which you know (at some level) makes a literal life-or-death difference every day, every hour you’re doing it. It certainly beats processing piles of paper or data (something I once did for a year, and which nearly drove me batshit crazy), even if the ultimate results of being a part of such a complex process actually means that practical things happen somewhere.
Nonetheless, we do often find these deeper questions coming up in the course of our daily work. It’s inevitable in this kind of job. And, as I’ve already mentioned, there aren’t any easy answers. Sometimes, faced with someone who seems to be suffering a lot and, at the same time, doesn’t seem to be able to just die, there are no good answers at all. You learn to cultivate a kind of staid attitude of compassionate resignation; you do the best you can, the best possible for the person you’re looking after and try to leave the questions aside. Because, honestly, they don’t help.
No, I often don’t know any answers. What I do know are some stories, one of which I’d like to tell now.
Jimmy was the son of immigrants to Germany from a Mediterranean country. They had left their homeland as young adults over forty years ago, with little education or training, no knowledge of the German language, and very limited concrete knowledge of the kind of life they were going to lead. All they had – like millions of other migrants – was the hope that life elsewhere would offer them and their children more possibilities than a continued existence in the place of their birth.
They quickly found somewhere to live, and jobs to do. There was plenty of work available, even for people without high levels of training and very rudimentary language skills. And, though the work was hard and often monotonous, the money was good and the standard of living (material things like electricity and washing machines and motor cars, and other stuff like health care) almost immediately available to them was far beyond what they could have attained in the old country. Certainly they were homesick, and getting by in a foreign country was often stressful, but they felt sure that their decision had been the right one. If nothing else, their children would have opportunities which would have been impossible at home. And they themselves could dream of moving back home when they retired, the modest amount necessary to build a really comfortable house in their home village saved and a good German pension to give them security in their old age.
They soon had a daughter, but she died shortly after childbirth. And then Jimmy came along. It was a difficult birth and the doctors told the mother that there would be no further children. But Jimmy was a healthy and happy baby and grew up to be a healthy and happy boy.
He became the repository of all his parents’ love, and all of their hopes and expectations. And he lived up to all of these splendidly. He was a lively, fun-loving kid, bright as a button at school, helpful at home, popular in the neighbourhood. He became an altar-boy and learned to play the piano. After finishing secondary school with very good grades, he went back to his home country for a year to do the mandatory military service demanded of all young citizens, even those born and living abroad. When he came back to Germany, he could have gone to university, but elected instead to train as a bank-official. It meant he could continue living at home and it offered him the kind of career his parents could never have hoped for. While Jimmy could have aimed higher, he was quite content with the choice he had made and the life which was unfolding for him.
He had saved some extra money from summer-jobs he had done during his last years at school, and his parents topped up those savings and bought him a car for his twenty-first birthday. And, a few months later, driving to a placement in a branch of the bank which was training him, a few miles from his home town, on a cold January morning, Jimmy hit a patch of ice in a curve on the road and collided with a tree.
The tree won.
The car wasn’t the newest, which meant in January 1997 that it wasn’t equipped with airbags. And, if truth be told, Jimmy was probably travelling a bit faster than was wise when he hit that ice – he was, after all, young and didn’t have all that much driving experience. At any rate, when they pulled him from the wreck he had broken fourteen different bones and had a very serious skull fracture.
For months he wasn’t expected to survive. But his condition slowly stabilised, he came off most of the machines and started to heal. The problem was that skull fracture; Jimmy had very serious brain damage which was irreversible. But he had regained consciousness, and that was both the wonder and the tragedy.
Apart from leaving him almost completely paralysed, the brain damage had wiped out large parts of his rational capacities. It’s hard to really describe his situation to those who do not know him. In a vastly simplified sense, he is frozen at a mental age around equivalent to that of a six-month-old baby. Speech is beyond him, though he is able to understand some of what is said to him. He has a generally friendly disposition, though he is inclined to be a bit reserved with strangers – for he is able to recognise people he knows well. He can shout, or rather, howl, which is something he does continually when he is in discomfort or pain, a situation in which he becomes quite agitated. This happens regularly when he is being washed, cleaned up, or dressed, for all of these operations are both stressful and painful for him. Jimmy’s paralysis is that of the spastic variety, one with an enormously increased muscle tone. This means, for example, that his left forearm has – in the course of the years – completely pulled up flush with his upper arm, so that it takes all the strength of an adult to pull it far enough back to wash it, and check for irritation in the crook of the arm, something which frequently occurs as a result of skin chafing on skin and which then has to be treated. Something Jimmy does not enjoy. Or that his fingers are hopelessly twisted around each other.
As I mentioned, describing his mental state as that of a baby is only a first approximation, for it is no more accurate to describe people with traumatic brain injury as children, than it is to use the same comparison for people suffering from Alzheimer’s. There are superficial, almost coincidental similarities with babies (such as incontinence or linguistic inability), but the basic situation is quite different. And Jimmy has retained some capabilities which are far beyond those of a six-month-old.
Chief among these is a sense of humour. In one sense it has become a little cruder than it used to be – or it may be that some adult limiting conventions have just been burned away. At any rate, Jimmy loves slapstick, the broader the better. Somebody stubbing their toe and then cursing loudly in annoyance will send him into peals of laughter. Abbott and Costello or Laurel and Hardy would be right up his street, but – for some strange reason – Jimmy doesn’t seem able to process TV pictures. The sound alone of somebody cussing is something he finds amusing and the fouler the language the better, as far as he’s concerned. I’ve often driven him into paroxysms of laughter (and distracted him from the most uncomfortable aspects of what I was doing) while caring for him just by making farting noises.
The marvellous thing about Jimmy’s sense of humour is that it’s completely honest, and absolutely total. And it is a gift which he is capable of putting to work in a delightfully mischievous manner. Imagine a group of people sitting around a table, engaged in a serious discussion. Then imagine that Jimmy is there too. This can happen, for he is often sitting in the day-room of the ward where he lives during a staff meeting. Sometimes he simply appears thoughtful, lost in his own special world. But sometimes he feels like establishing communication and he starts looking around at the group, trying to catch someone’s eye. Beware – for if you look at him you’re lost!
When he gains eye-contact with you, he grins. Almost instinctively, you smile back. That’s all the encouragement he needs, indeed, even if you don’t respond, catching your gaze is usually all he needs. He starts to chuckle and this chuckling quickly develops into hearty laughter. Trying to hush him only makes it worse, as he finds such attempts hilarious.
It really doesn’t matter what you do anyway, because Jimmy’s laughter has another killer characteristic. It is irresistibly infectious. There is something so honest, so complete, so true about his laugh that it conquers all attempts to gainsay it. Before you know it, you are laughing too, in the way that you found yourself uncontrollably laughing at something you found funny when you were a child. And, just like it used to happen when you were a child, you soon find everyone in the group trying unsuccessfully to control that urge to laugh, to laugh until your belly hurts and tears are running down your cheeks.
Jimmy has done it again. Wrecking all the pretentions of serious adults at a meeting, he has given them – us – all the priceless gift of joy, taking us beyond the mundane concerns of our reality into a realm of simply revelling in the sheer inexplicable fun of just being alive.
When I hear people discussing situations in which they imagine it would no longer be worth living, in which they feel they would rather be dead, I often find myself thinking of my friend (for this is the best word I can use to describe how I feel about my relationship to him), Jimmy. He is confined to a wheelchair, is incapable of almost every voluntary movement, drools and dribbles, has to be fed through a tube, would lie in his own piss and shit if he were not cleaned up regularly. Is his human dignity worth any less than mine – or yours – because of all this, and because he has been so severely mentally damaged? Is his joy worth less than that of a physicist discovering a new sub-atomic particle, or of a musician in that moment of performance when everything gels, or that of lovers during a shared orgasm?
Despite the conventional tragedy of his story, Jimmy is possibly the happiest person I know. The price he has paid for it in his life is, seen in a conventional way, unacceptably high – one none of us would willingly pay. The loss of the Jimmy who was, all that potential, the life destroyed the moment his car hit that tree, is, of course, heartbreaking. Yet does that detract in any way from the value of his happiness as he is today; make it somehow worth less than those all too seldom and fleeting moments of unalloyed joy the rest of us have to get by with?
I don’t have any answers to questions like that. But then, when I see Jimmy, I don’t need them.
Pictures retrieved from: