Life - interrupted

Just the other day I was at a birthday party; a birthday party for a five year old. There were presents, a cake, and a gang of kids creating excited mayhem. There were even more adults present – but that too is not unusual for a large extended family of Turkish immigrants to Germany. A perfectly normal, happy occasion.

Except that it wasn’t. The birthday girl was physically there for the occasion, but that’s about all you can say about her, because she wasn’t involved in the proceedings in any other significant fashion. It is debatable whether she had any real perception of what was going on at all. And to really explain why that is the case, I have to tell a very sad story.

When Sümeyye went to the local hospital to give birth to her second child, five years ago, there was no unusual cause for concern. She had already given birth to a healthy son, the pregnancy had been unremarkable – everything seemed routine. But during the birth the first warning biometric signs started to crop up, showing that the baby was in some distress. Ultimately, the instruments could record no more signs of life – but this was at a stage where the top of the child’s head was already showing, so a Caesarean section was impossible.

Little Kübra was pulled with forceps lifeless into this world; something having gone wrong with the supply of blood and life-giving oxygen through the umbilical at some stage of the birth. But the delivery team got working with all their collective expertise, and all the wonderful modern machines available to them and they got Kübra’s heart beating and her lungs (at least intermittently) working.

As the days went by, Kübra’s basic bodily functions stabilised. Unfortunately, the massive brain damage caused by the prolonged lack of oxygen during the birth was not reversible. Kübra was in a persistent vegetative state and would, in all likelihood, remain in this state for as long as she lived.

I’ve been working with people in a PVS for over a decade now, and I’ve written about it a number of times here already. But Kübra’s case is particular in its poignancy.

We know next to nothing of the internal world of those in a PVS, we don’t even know for certain if there is such a world. We know that these people are not brain-dead; at some levels large parts of their brains are working normally. The greatest damage – particularly in those who have landed in this state due to oxygen deprivation – is in the cerebral cortex; the part of the brain which Hercule Poirot called “the little grey cells” and which is (at least to a very significant degree) the seat of our consciousness, the physical matrix of our rationality. There are even some neurological experts who would argue that in such cases there is no more individual personality present. No more than a vegetable. Nobody home.

We just don’t know. Although our knowledge of how the brain works has been growing rapidly in the past few decades, and will certainly be one of the great fields of medical advance in the 21^st Century, our explanations and maps of the brain still resemble, in many ways, the work of pre-Colombian cartographers, with many blank regions decorated only by fancy cursive scripts stating, “Here be dragons.”

There are reasons to believe that many people in a PVS do sometimes seem to perceive something, that there is some kind of awareness there, even if weak, intermittent, or badly damaged. We know that for many functions of the brain a number of different regions are simultaneously involved, and that long-term memory is stored in a different way to short-term memory. There may be reasons to believe that some of the essential parts of our personality and character are rooted deeply in multiple areas of the brain. And so, for an adult in a PVS, there are all sorts of reasons for doing biographical research, making sure that they live in a familiar environment, are in contact with people they knew and loved, playing them their favourite music, etc.

But think about Kübra and her situation. At the very moment of birth nearly everything was switched off – and then the switch itself was broken. She came into the world so badly brain-damaged that even the sucking reflex, that most primitive, necessary instinct to secure nutrition during infancy, had been wiped out. She does not suck, or chew or swallow; her eyes don’t even close when she sleeps. Even using the vastly simplified (and inaccurate) picture of a baby as a tabula rasa, a blank page which begins to be written with all sorts of wonderful things from the moment of birth onwards, in Kübra’s case there is no pen, no stylus; the page remains simply blank, there is no development of personality.

But her brain-stem seems to be generally all right; she breathes, wakes, sleeps and digests normally. Apart from a feeding tube into her stomach, and a tracheotomy tube in her windpipe (necessary because she cannot cough up phlegm), she’s not dependent on any machines. She lives on from one day to the next, locked away from the world in an, at best, permanent dream. But, being realistic, it is as least as likely that there is no self-awareness there at all, like a computer where nearly every component is ok but where the RAM just won’t work, is broken and can’t be fixed.

But, as awful as it is, Kübra’s situation isn’t really the tragic one here. For most of the time, as far as anyone can observe, she seems to live her life in supremely absent equaminity. Encapsulated within herself, her inner world – whatever that may be – seems to suffice for her. If pressed, I would have to say that generally – if she’s not disturbed by anything acute – she is quite content.

* * *

My first encounter with Sümeyye, Kübra’s mother, was around four years ago. For some reason which I no longer remember, Kübra was to spend a few days in our unit for long-term care of people in a PVS. She was very tense, worried and nervous about leaving her daughter alone with us. We smoked a cigarette together. I had the impression of a woman in a state of permanent outraged shock, someone caught up in a ghastly, unending horror film. Her baby had been horribly, irretrievably damaged and the only purpose she could see for her life was to care for her, do everything necessary for her, fight for her. And yet, so much of this constant, soul-sapping struggle was without any result; all the efforts she made would never be rewarded by as little as one smile from her baby. She would never see her walk, play, make friends, never hear her laugh, never experience her child smiling at her, embracing or kissing her, loving her back.

But beside her shock, the vast personal insult of her concrete situation, there was also another impression I had, one not quite so noble perhaps, but maybe an attitude necessary for her own essential psychic survival. I had a sense that at some level she was consciously assuming and playing a role; that of the tragic heroine – a woman hounded by fate and the cruel, malevolent gods, but bravely shouldering an unspeakably unjust, impossible burden. Well, as John Lennon once put it, whatever gets you thru the night – and Sümeyye had a lot of hard nights to get through.

Our company was involved in caring for Kübra from the beginning – from the day, a couple of months after her birth, where they finally sent her home from hospital, admitting that there was nothing more that they could do for her. A team was set up, with colleagues spending eighteen hours daily in the family home.

The intensive nursing care of such a child at home is a hugely difficult undertaking for all concerned. These families are living with a constant, unhealing, open wound in their midst. To enable them to cope, they have to put up with the presence of strangers – a continually changing parade of strangers – constantly there in the middle of their very private space. Given the stress they are under, it is understandable that they seldom have the energy and the mental balance necessary to bring the kind of tolerance, openness and sensitive respect which might form a stable foundation for a longer-term creative relationship with the nurses who daily invade their family. If some of those nurses are personally insecure or inexperienced, this quickly becomes an occasion for comment, indignation, complaints and ultimately demands that the offending person be replaced. If the nurse is competent then the problems usually take a little longer to become apparent, but they are often just as severe. Because a competent nurse will almost inevitably commit an unforgivable sin – he or she will, in many situations, know better than the mother what’s right for her child. And for desperately wounded mothers like Sümeyye, this is simply intolerable.

Our company spent around three years nursing Kübra at home and then Sümeyye fired us. She thought she had found another nursing company who could do it better. It was all part of that kind of fevered, desperate activism in the face of the hopelessness of her child’s illness so common among parents in her position. It is part of human nature to hope beyond hope, to believe in a brighter future even if the present offers no prospect of it. We tell stories like that of Lorenzo’s Oil, asserting a fundamental conviction that if you do everything possible, don’t give up, carry on fighting against an unjust fate, storm heaven with prayers, then, finally, you will triumph over adversity and achieve your dream. Reality is often much harder; Snow White dies of the poisoned apple and Sam and Frodo are caught by the Orcs long before they reach Mordor. But after Pandora opened the forbidden box and released all the ills to which humanity is heir, hope remained – without it, however ungrounded it may be, life would most probably be unbearable.

The new nursing company brought no miracle. At the beginning of the year Sümeyye renewed her contact with us. She just couldn’t go on any longer. An agreement was reached that Kübra would spend a couple of months in the little group of five children we had just set up. In the meantime, our company would try to set up a new team to take over the care of the little girl at home.

Six months after she came to us, Kübra is still there. Unlike in Hollywood, we’re in the nursing, not the miracle business and, as yet, our firm has not been able to find enough trained and willing nurses to establish a team for her in her home city, around fifty miles away in the Ruhr area. Being realistic about it, probably every qualified available nurse in her city interested in this kind of work has already been there and doesn’t want to go back. Such home assignments are something hardly anyone can do for an indefinite period; the contradictions you have to endure, day in day out, are just too wearing. I should know – I spent a year doing it in three different settings and it nearly resulted in my own ruin. 

Another development has also taken place. Sümeyye is more relaxed, more engaged in living her own life. She handed her child over to us, taking the leap of faith that we can look after her. She can finally get on with living, begin to free herself from the nightmare which began five years ago.

Maybe. Perhaps. The situation is still very fragile. The facts that I have outlined in the previous two paragraphs are not discussed openly. Officially we are doing everything possible to establish a team to nurse Kübra at home, ostensibly Sümeyye can hardly wait for this day to come.

Unspoken truths. Truths which are probably better left unspoken, because they are just too hard to be too clearly expressed at the moment. Sümeyye has a long journey ahead of her before she can hopefully accept that the situation of her child is not her fault, that having us care for Kübra is not a sign that she is abandoning her child, that she has other responsibilities in life – her son, her husband. That the most basic responsibility she has is that for herself.

It is her journey and she must make it at her own speed. If she makes it at all.

* * *

So, having explained all this, you can now better understand why I spent last Friday afternoon and evening accompanying Kübra to her own birthday party, an occasion which didn’t interest her in the least. Indeed, the whole business was more stress for her than anything else. But then, this celebration wasn’t really about her anyway. It was the commemoration of a dream, and the refusal to accept that its mutation into a nightmare is the only truth there is. It was a signal that all concerned understand the deeper, unspoken truths and understand that the others also understand them, but that these truths are too fragile to be spoken aloud. And so all collude to keep up the official fiction.

Life is messy. Sometimes everyone doesn’t live happily ever after. And sometimes you have to accept uncomfortable compromises, because they’re the best you can get at the moment.

Pictures retrieved from:

http://www.losebabyweight.com.au/wp-content/uploads/2011/04/Child%E2%80%99s-Birthday-Party1.jpg

http://blogs.psychcentral.com/dbt/files/2012/06/emptymind-c.jpg

http://indyeahforever.files.wordpress.com/2010/04/mother-and-daughter.jpg

Human Dignity; My Friend Jimmy

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:

http://wallpoper.com/images/00/32/45/90/pink-floyd_00324590.jpg

http://www.medexassist.com/images/Odyssey/pc/fall-08/car-crash.jpg

http://jameswoodward.files.wordpress.com/2010/12/laughter1262542393.jpg

Brain Damage

Midnight has come and gone and the rest of the night will, hopefully, be quiet. Most of the preparation for tomorrow’s day shift has been done, I’ve just done my round and all the children are now comfortable and sleeping. The next hours will now be spent with the struggle to stay awake, another couple of rounds, reacting if some of the monitoring equipment should sound an alarm before the final round begins at around five thirty, making the last preparations for the morning, handing over to the day shift and then, finally, going home to sleep shortly after eight o’clock.

The last night shift before beginning two and a half weeks holiday. The last night shift of many – this month and in the past couple of months. I’ve written about night nursing before here. It’s part of the job and it does have some advantages, despite all the downsides. The larger part of what I’ve posted here in the past two years has been written in those quiet hours when my patients have been quiet as a personal antidote to the basic diurnal instinct of my body to use the darkness for sleep.

We have five children here at the moment – all of them seriously, chronically ill. Two of them are on respirators at the moment, including Jenny. I’ve written about her a couple of times before (here and here). Jenny is in good form at the moment. Her basic condition remains the same (deaf, facial paralysis, inability to swallow, etc.) but she is free of the respirator for most of the daytime, is soaking up sign-language like a sponge (much more quickly than most of us can learn it) and refuses to regard herself – or behave – as anything other than the intelligent, lively, fun-loving four year old which she is. She generally sleeps the night through and when she awakes (like nearly all kids of her age, she usually wakes quite early) is quite happy to remain in her bed, playing with her Nintendo until the day shift arrives and she can enthusiastically throw herself into a new day.

There’s an alarm. Lisa has problems. Too much phlegm. A bit of suction and her bronchia and lungs are free again; her blood-oxygen level back to normal. Lisa has been having a lot of problems in the past couple of months.

Lisa will be twelve in a few weeks and I have known her for a long, long time – over ten years now. On the day before her first birthday she drowned. Having been pulled out of the water, a doctor spent forty minutes working on her before he succeeded in getting her heart going again. Forty minutes clinically dead. More than long enough, unfortunately, for Lisa’s brain to be severely, irrevocably damaged by lack of oxygen. Since then she has been in a Persistent Vegetative State (PVS).

I’ve been working with people diagnosed as being in a PVS for around eleven years, on and off. Nearly all of them are “victims” of the wonderful progress medicine has made in the past half century – a progress which is still a long way from an impossible perfection. What do you do when you pull a lifeless person out of the water? Everything you possibly can to bring them back to life, of course. Heart massage, defibrillation, cardiac adrenalin injection; and if it doesn’t work the first time you keep trying, increasingly desperate, until something works or you finally give up.

In retrospect – and everything is easy in retrospect – you can argue that they should have given up on Lisa earlier. I’m not in a position to make any kind of judgement in her case; I wasn’t there. Sometimes people can be brought back, with moderate abiding damage, or no lasting damage at all. And which one of us can condemn a team which was led by that fundamental human instinct to struggle for the life of a child to go on trying beyond the limits of what was sensible? In the end, they succeeded – and that success gave rise to a tragedy.

Our brain is continually working, and therefore continually needs energy, energy provided by the chemical reaction between glucose and oxygen; basically burning sugar. So the brain has to be continually supplied with these ingredients and if this supply is interrupted for more than a few minutes, brain cells start to sustain damage and die. At a certain stage, this damage becomes generalised and the results become irrevocable. The problem is that no one can say beforehand just when this stage has been reached.

In Lisa’s case it had been reached. After she had been stabilised, MRI scans showed that large areas of her cerebral cortex (what is often referred to as “grey matter”) had been severely damaged. The cerebral cortex is that part of the brain which, experts agree, plays a key role in memory, attention, perceptual awareness, thought, language and consciousness. But she was not “brain dead” and her brain stem was functioning fairly well, so that, for example, she was breathing and controlling her body temperature normally. With a tracheotomy tube (largely to facilitate the suction of phlegm and saliva) and a feeding tube, she was able to survive autonomously.

And so she has, for nearly eleven years now. What do we know of her inner world? Very little. While large areas of the brain responsible for her essential self-awareness just aren’t there, even this fact allows us to reach very few conclusions. Developmental neurology tells us that the development of the brain is not complete at birth, but that the final “hard-wiring,” the completion of the building of neuronal pathways and connection networks, goes on until around the end of the third year of life. Though this means that significant portions of Lisa’s brain did not reach a final stage of development, on the other hand it also presents the possibility that her severely damaged brain was still in that pliant form where it could develop alternative pathways and networks (something that would be impossible in an adult brain).

Lisa lives in her own world – most probably a world of an eternal present, without past and memory, hope and future. On some levels she seems to be aware of her surroundings. She likes a quiet and relaxed atmosphere and reacts negatively to stress and turmoil. She may not be rationally processing her environmental perceptions but she does seem to register them on other levels, in other ways. Anyone who starts to work with her learns this very quickly. You do not go into an encounter with Lisa in a tense, stressed, wound-up state. She will sense this immediately and react with stress herself. You have to relax, be calm and self-assured because she is extremely perceptive on an emotional level and will register your mood quickly and – basically – mirror it back to you. Working with her is a bit like a Zen exercise; you have to leave everything else outside, concentrating on her alone, moving into her world of the ever-now, letting the connection between what she’s feeling, and what she’s needing, and what your professional judgement tells you can be done, develop organically, at a level almost beyond thought, moving seamlessly into action which is for her and the situation in which she finds herself inevitable and right.

If you’re lucky. Sometimes nothing works. And, worryingly, such situations have been increasing in frequency recently.

For Lisa is coming up to her twelfth birthday and the first winds of the developmental storm known as puberty have started to blow through her body. It is a storm which is an extremely complex interaction of all sorts of hormones, including hormones produced in the brain. It is also a cascading process, where one development sets lots of others going and where everything is connected to everything else.

Puberty is stressful enough for a normal teenager. For Lisa, whose capacity to deal with stress is minimal, it threatens to be a real horror trip. Living in her eternal now, she has no possibility to rationalise or relativise what’s happening to her – she is completely defenceless in the face of all the hormonal and developmental gales which are starting to blow.

We are aware that she may not survive it.

For we have begun to realise that the damage to her brain may be accelerating, that ever more of it is atrophying. Benzodiazepines (like Valium), which used to help her with seizures and stress when she was younger, aren’t working. The doctors suspect that the relevant receptors in the brain just aren’t there any more. It may well be the case that even morphine won’t work (we haven’t tried it yet). The next thing planned is a CT scan (possibly also MRI) to try to get a picture of just what is going on in her head. Not that it will really make much difference; Lisa’s situation is far beyond almost anything that medicine can do.

After so many years looking after people in a PVS I do not make ethical judgements. Lisa lives and – for as long as she lives – she is a precious human being who needs and will get all the support it is possible to give her. When she can no longer live, she will leave us. I will, hopefully, be able to say that her living was good and her dying good also.

The last night shift is over now. Lisa had a bit of stress, but I was able to help her and she’s peaceful now, her blood oxygen level good, her pulse around eighty beats per minute, her muscle tone fairly relaxed (for her, anyway; one of the results of her condition is a generally sharply increased muscle tone – spasticity). She’s probably asleep. It’s not always that easy to tell as her eyelid reflexes don’t work; Lisa sleeps with her eyes open.

I do it with my eyes closed. During the daytime when I work nights. For the next couple of weeks I can live like a normal human being. Whatever normal is.

Pictures retrieved from:

http://nursecoachonline.com/new/wp-content/uploads/2010/07/cartoon_owl_night2-e1279097620649.jpg

http://topnews.in/health/files/brain-damage.jpg

Burnout II: Getting Back on the Horse

Over a month ago I published a pretty personal post here about the unpleasant experience of going through burnout and the practical measures I was undertaking to deal with it. As a number of things have happened since, I thought it was time to write an update.

After six and a half weeks on sick leave, I went back to work last Monday. It wasn’t an easy decision to make. The enforced pause certainly helped me to clear my head – to an extent, at least – but the renewal of energy, a “recharging of the batteries” which I had hoped for, didn’t seem to be happening. I spent much of the time sitting at home, reading a lot and the normal, unthinking energy which was available to me for so many years for doing all the myriad things from housework, to visiting friends, to managing all the basic affairs of everyday life, to writing didn’t really kick in. Oh, I did manage to do the most necessary things and even a number of other things which weren’t strictly necessary but everything was still shaded with a heavy patina of effort; the old lightness which I had realised I had lost and the loss of which had so shocked and pained me didn’t appreciably return.

Very well, I thought to myself, taking time out hasn’t been the panacea I had hoped it would be. Panaceas rarely are all they are cracked up to be anyway; cure-all nostrums are usually the province of snake-oil salesmen and the treatment of suffering in something as complex as the human psyche is also likely to be complex – a process involving various elements in dynamic relationship with each other and needing time and space to develop. I had started taking medication, I’d begun a process of therapy which will (if all goes well and my health insurance can be given the proper signals to get them to finance it) grow into a longer phase of classical psychoanalysis, I had discussed my situation with professionals, family and friends and had productive talks with my employers concerning certain negative aspects of my concrete work situation. Now the time had come to take the next step, to climb back on the horse from which I had fallen.

And so – not without a large dose of trepidation – I went back to work. One of the changes I had negotiated with my employers was that I will, for the foreseeable future, be exclusively assigned to work in the new project we are developing; a middle-term residential group for the care of very sick children (sometimes accompanied by their mothers), who are in need of continual, often high-tech medical support in order to continue their healing process, or just to go on living. At the moment, the group is composed of four children (aged between six months and eleven years) and two adults (who are only there temporarily, these places to be ultimately available to children as well) in temporary, provisional accommodation. Permanent, custom-built quarters are presently being completed and we will be moving in there before the end of the year.

Six patients all in need of extensive, complex, permanent, time-consuming intensive care, with two nurses always on duty; there is plenty to do. The first twelve-hour shift saw me exhausted at the end but it was a good kind of exhaustion – that kind of tiredness which comes from having worked hard doing tasks which offer a sense of immediate value and worth. In the course of the week I found myself quickly adjusting to the physical demands of the job. And I realised that the enforced pause had, in fact, done more for me than I had thought. I found myself better able to cope with the various time-consuming idiocies enforced on anyone working in any of the over-developed, over-regulated, under-staffed, under-paid, misfinanced lunatic complexities which are a characteristic of health-systems all over the world. The senseless bureaucratic and administrative hurdles which independently uncontrollably burgeon in any system beyond a particular level of complexity, which would have had me seething with frustration a few months ago (this itself a symptom of the fact that I had gone way beyond my own tolerance levels), I could now accept with a lot more serenity as part of the inevitable Catch 22 reality in which all of us in our mad modern society are more or less caught.

I am not cured – this will be a long journey, and relative health and sickness are always just a snapshot of an instant in the constant complex dynamic interactive process which is life anyway. But I find myself seeing things more positively and see grounds for hope that my basic levels of essential energy will increase in the doings of things rather than waiting for them to grow so that I can do things.

I decided to be basically open with my colleagues (without going too much into details) about the reason for my absence. I received unexpected support for this during the week. The manager/trainer of one of the most prestigious Bundesliga soccer teams, Schalke 04, Ralf Rangnick, resigned his position last Thursday with immediate effect. The reason he gave was the spectacular, honest admission that he was suffering from an exhaustion and burnout syndrome. While, as with most news items in our high-speed, media-driven world, it will be a seven-day wonder, such public announcements do help the process of bringing various manifestations of mental suffering and illness into the realm of more serious open discussion and further the process of dismantling taboos, clichés, speechlessness and misunderstandings about such issues which are widespread in our societies.

Returning to work, I discovered that others had very different difficulties to deal with. I have written about Jenny a number of times here before. To recapitulate: Jenny is a three-year old girl, who is deaf and dumb, suffers from a partial facial paralysis, a dangerous weakness of her respiratory musculature, an inability to swallow and some balance and coordination disturbances. As a result, she has a tracheotomy tube in her throat and spends long periods daily on a respirator. She is also very intelligent and extremely lively.

Complicated gene tests have confirmed a couple of weeks ago that Jenny suffers from something called Brown-Vialetto-Van Laere syndrome. This, of course, means nothing to her, but it tells us that her prognosis is very bad as the general course of the illness is progressive.

Jenny was dealing with two much more urgent problems. A month ago, my colleague Jan, who was the member of our team who had the deepest relationship of us all with her (in a very real sense, a replacement father-figure), suddenly and completely unexpectedly died in his sleep. He was two years older than me. At exactly the same time, Jenny contracted a very serious case of pneumonia, which necessitated a stay in the Intensive Care Unit in our local hospital. Given the fact that she is living with a hole in her windpipe where nature never intended that a hole should be, this is the kind of thing which can happen; it almost certainly won’t be the last time. When she returned, it had to be explained to her that Jan would never be coming back.

She has understood that and – we think – she has accepted, according to her own categories, that he has not abandoned her. But she misses him and suffers from his absence.

She greeted me like a long lost friend (which, I suppose, I was to her) and seems to have transferred some of her fixation with Jan to me. She stuck to me like a burr all week long, appointing herself my assistant nurse and accompanying me when I went to the other children to take care of them. This has been made somewhat more complicated by the fact that she needs extra oxygen all the time at the moment, so that I spent a lot of time lugging her oxygen tank with me.

For the events of the past weeks have weakened her. After a maximum of four hours, the effort of breathing independently has so exhausted her that she has to be put on the respirator for a couple of hours. Her continence – which she had achieved shortly before the illness commenced nearly a year ago, lost then and won back again in the past six months – has taken a hit. This annoys and embarrasses her, but she’s got enough determination to get it back once more. And she retains the capability to put all of her intelligence and creativity into continually working on marvellously extensive and sophisticated communication, despite her deafness and lack of speech.

Given her confirmed diagnosis, we are haunted by the dark suspicion that she may have already seen her physical zenith. Perhaps. But we shouldn’t write our prognoses without figuring in Jenny’s determination and stubbornness. They are part of a complex, fascinating personality which makes her occasionally amazingly frustrating but more often supremely rewarding to care for – sometimes simultaneously!

Engaging with Jenny has, at any rate, done me good. It is an intense, positively strenuous relationship which, in the way which children determine, takes place primarily on the emotional level of the ever emerging now. A condition which leaves very little room for depression. And for all that I am deeply thankful to my young friend. Having climbed back up on that horse, I sense that I am not alone; Jenny is there too, sitting in front of me.

Though the song seemed appropriate to me anyway, the fact that David Coverdale celebrated his sixtieth birthday this week makes it even more so.

Pictures retrieved from:

http://highchaparralnewsletter.com/Archives/Images/MountHorse.jpg

http://lanemetalworks.com/cowboy%20and%20girl%20on%20horse%20circle.jpg

Death: Don't Fear the Reaper?

We nearly lost Jenny – the little girl I wrote about recently here – last Saturday.

She had seemed a little out of sorts after her nap. She and I had worked on a jigsaw puzzle together and she had trouble concentrating. She was staggering a bit more than usual, but we suspect that she may have some balance problems as a result of the damage to her ears I mentioned in that previous post – it’s a difficult thing to be sure about with a three year old, particularly when they’re always dragging a heavy, corrugated double hose from their neck attached to a respirator as Jenny has to.

I had just mentioned my suspicion that something wasn’t quite right to my colleague when Jenny keeled over. She’d lost consciousness, had turned deadly pale and her lips were turning that shade of blue which tells you that she’s not getting any air. I picked her up, my colleague grabbing the respirator and we rushed to her room where there was a new tracheotomy tube, CPR bag (also known as an Ambu bag), and more equipment generally. I removed her tube as quickly as possible (noting in passing that it was blocked with a thick plug of mucus) and inserted a new one. My colleague started working the bag immediately, efficiently pumping air into the child’s lungs while I connected a tube from the tank in the corner to the bag to try to put some of the oxygen she’d been missing in the previous minutes back into her as quickly as possible. Reboot the system with a kick-start.

And nothing happened. We’ve had Jenny in this situation before but up to now, as soon as the tube was replaced and she started to get air again, she responded almost immediately. Not this time. My colleague was pumping away but Jenny still lay there, unmoving, white and blue, her eyes wide open, seeing nothing.

I started doing compression, briefly alternating both bag and compression while my colleague phoned for an ambulance …

… tell them as quick as they can, sirens and lights, no, we’ve already started resuscitation … shit, come on Jenny, come on girl, everything’s all right, come on now, darling, you can do it, come back to us now …

A minute went by, maybe two. I’m not sure – I certainly didn’t have time to look at my watch – and we continued compressing and bagging. A black feeling of despair started to knock at the edge of my consciousness as I sensed the possibility that Death had joined us in the room. Then she twitched.

Just once, then nothing. We carried on. She twitched again and then started to trash around weakly. The horrid inky blue colouring around her lips faded back to something approaching normal. Jenny was there again. I could almost hear the whispering whish of his black robe as Death slowly withdrew. Obviously he’d decided there was nothing for him here. Not this time.

When the ambulance crew arrived a few minutes later, Jenny was huddled in my arms, clinging tightly to me. A little girl, needing comfort.

Thanks, guys, no, it’ll be all right now, we’ll keep her here, we can do nearly everything they’d do in hospital anyhow, it’d just freak her out and they’d probably have to sedate her … sure, we’ll call you again if we have the feeling anything’s not quite right …

* * * * *

In over twenty years of nursing in one form or another, I’ve shared a room with Brother Death more frequently than most people – if not as often as those colleagues who work in Accident and Emergency Rooms around the world. But I’ve been there often enough when he arrived on the scene and, noting that the sand in his hourglass had run through, beckoned implacably with his bony finger.

While I would have fought him every inch of the way for Jenny – for there is something especially insulting, deeply wrong, which we are properly hardwired to feel about the potential death of any child – there have been many times when I will admit that I have seen his coming as welcome, inevitable, even overdue. But then, most of the over twenty years I have now spent in nursing have been, in one way or another, either in the area of geriatric care or the care of long-term very seriously ill people. I suppose this gives me a different perspective on death to that of most people – particularly in our society.

The instinct to see death as the ultimate enemy, to fight it with every fibre of our beings is programmed into that very fibre of our beings – at its most ultimate biological level. That which makes the double helix of deoxyribonucleic acid (DNA) unique is its “drive” to replicate itself, to continue and, ultimately, develop its existence by reproducing itself. It is dynamism, life, in its most elemental form; it can do no other than to strive to live, for this is what defines it and thus death is its antithesis.

Yet if life is the governing postulate of the DNA which defines our biological reality, the second law of thermodynamics – the tendency to entropy, the decay of order in any system to a formless random soup – is its counter-postulate at the level of the physical reality in which biological existence finds itself; death. And it is within this field of tension created by our biological drive to live and the inevitable ultimate failure of that drive (at least on the individual level) in death that we experience and attempt to make sense of and infuse meaning into our individual livings.

Given this basic existential tension, it is no wonder, then, that our initial deepest reaction to death is one of instinctive negation; our very genes cry out, “No, this cannot be, this must not be!” Yet another part of us knows that it is inevitable, that it comes for every living thing, for the experience of birth, growth, growth, maturation, decay and death is something ever present. One of the images we use for death is that of “the Grim Reaper;” when the grain is ripe it will be harvested and the scythe will cut through the stems, mowing all that comes into its path.

This challenge for us to find meaning in the fundamental existential experience of contradiction between life and its inevitable ending defines us in all sorts of ways. It is, I believe, a basic impulse for our deep instinct towards religion – for most religions have, as one of their central themes, the question of death and our inability to accept it as a final ending. The unthinking urge to live, the defining aspect of our genetic coding at a level much deeper than our reason, finds an expression in our rational, “spiritual” attempts to affirm life as an absolute principle beyond the caesura of death. Death, the ending of the existence which defines our experience is unthinkable, unimaginable, therefore it cannot be the end – instead it is explained as a phase change, or as something which entered the world as a kind of flaw which is to be overcome.

It is not my intent here to use this argument to refute any religion, or religion as such; rather to try to see it within a wider existential context without making any claims of validity, one way or another.

Still, the contradiction between our drive to live and our realisation that this living must end has exercised humanity through all its history. While our very living is a continual negation of death – more, we also possess the ability to make new life through our children – at the same time we know how fragile that life is, how it can be wiped out in an instant. Memento mori [remember your mortality] is also a continual theme, from the slave whispering reminders of human finitude into the ear of the Roman general celebrating a triumph to the Catholic tradition of signing the foreheads of believers with ash on Ash Wednesday, accompanied by the saying, “Remember, man, that you are dust and into dust you shall return.”

And, of course, like most such antitheses, the art is in finding a balance – a balance between our driving lust for life and our realisation of our inevitable mortality. This challenge faces us daily as individuals, it also faces us as societies. For societies have tended in one direction or another – from the ancient Egyptian obsession with death to the sybaritic classical Roman Nunc est bibendum [let us eat, drink and be merry], from the post-plague medieval danse macabre to a tendency today to try to banish dying and death completely from the public consciousness into hospitals and funeral homes.

The immense advances made in hygiene, nutrition and medicine have made death a much less commonplace occurrence in the developed world in the past century and a half. Whereas for most of history death was an ever-present companion of life and could happen to you at any time, today, in much of the world, we confidently expect to live well beyond seventy or eighty. With tragic exceptions, death has become a province of the old and is done quietly, away from a society which often seems obsessed with the icons of youth, vitality and rude health.

Yet Brother Death is not defied, he still waits in the wings, the inevitable final encounter we will all make. It is right that we fight him with all the means available to us, for such is the very drive of life itself, but it is also the defining fact of our existence that this is a fight which we will all eventually lose. It is not space, as Gene Rodenberry poetically put it at the beginning of Star Trek, which is the final frontier, the final frontier is death and it is the boundary we all ultimately reach at the end of our journey through life.

Living fully, richly, is accepting that our lives are bounded by their ending, tapping into the power caused by the dynamic tension between our burgeoning vitality and the inevitable victory of entropy. Keeping the opposites in balance without denying or abandoning either. It is the very transitory nature of life which makes it so marvellously sweet. At the moments which are the most wonderful, the most ecstatic, we find ourselves wishing that this could go on forever. But the very impetus of that wish has its roots in the germ of knowledge that this too, like all other things, will pass.

Do not go gentle into that good night,
Old age should burn and rage at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.

Dylan Thomas, 1951

 

Pictures retrieved from:

http://www.tueftl.de/tl_files/img/modelle/babyrea.jpg

http://curezone.com/upload/Members/new03/grim_reaper.jpg

Caring for Very Sick Children

Though we knew that it was always possible that it would happen … no, given the almost complete certainty that it would happen some time in the near future, the news that Fatima had died still shocked most of us. The monitor screeched an alarm at 5.00 a.m. – it could no longer find a pulse. My colleague raced to her bed, called the emergency services and started the usual measures to try to revive her. To no avail. Fatima’s heart had stopped beating while she was asleep, three weeks after her second birthday.

Her prognosis had always been bad. Sickly since birth, the doctors had diagnosed a genetic defect which led to a progressive form of severe muscular dystrophy. She quickly had to be placed on a respirator, as her diaphragm and thoracic muscles were too weak to support her breathing adequately. The longer she lived, the more her muscle mass simply disappeared, leaving her arms and legs thin and stick like. She could hardly move at all, though she was working on grasping things – and getting better at it.

She had a great sense of fun –for mentally her development was normal – and a wonderful sunny smile, accented by two of the biggest, shiniest eyes I have ever seen, that could break your heart. In the end, it was her own heart that broke; the breakdown of muscle tissue wrongly coded by her DNA working through to the inevitable end.

So I’m here working an unplanned night shift again; the colleague whose watch it happened on last night has been given tonight off. That’s all right; it’s one of the things that teams are for. We’re engaged in building up a new team at the moment, to service a new concept our firm is working on; a small group of four children in a special unit with facilities for mothers/parents to live-in with them – a preparation for a possible return to the home environment.

All of these children are extremely ill and we are aware that any of them could die at any time. Yet it’s still a major trauma for everyone when that actually happens. We started this project in January and Fatima is the first child we’ve lost. Of the four, we knew, theoretically at least, that she was the one with the worst prognosis and that there was practically no chance that she would live for much longer. But we have experienced once more today that there’s a major difference between what you know theoretically and what you experience practically.

Thankfully, the work has its positive aspects as well. Take Jenny, for example. Last autumn, shortly before her third birthday, something happened. What it was exactly, the doctors still aren’t sure. Firstly she became deaf. Then, within the space of a few weeks, she became desperately weak, so weak that she could no longer walk, her autonomous breathing reaction disappeared and she developed an almost complete facial paralysis. Something had gone seriously wrong in her brain – to be precise, in her brain stem – but they still don’t know exactly what.

In hospital, the doctors installed a feeding tube, a tracheotomy tube and put her on a respirator. Slowly her condition stabilised and she was released into our care in January, accompanied by her mother. Since then, she’s been recovering.

The big problems – the deafness, the facial paralysis and the breathing difficulties – are still there. But they’re starting to look manageable now, for Jenny has recovered her strength. Where she had to be carried a couple of months ago, she’s now running around – still attached through the tracheotomy tube and two thick corrugated plastic hoses to her respirator. Generally that’s being carried by one of us, who she can keep well occupied chasing after her.

She has been developing a means of communicating with her environment, involving quite a complex combination of gestures and shrugs. She has a Bobby-car with a trailer and when her respirator is loaded onto the trailer she’s basically independent (at least until the battery runs down) and takes off on occasions on exploratory expeditions through the care centre to visit various friends she has made. Recently she has been trying to discover how fast she can make the damned thing go (and institutions have the advantage over normal households of long corridors) and is even experimenting on maximising her speed around corners.

Jenny, as you will be gathering by now, is quite a determined young lady. That determination is one of her greatest assets at the moment. Indeed, it is priceless because it is underpinning her basic picture of herself as a normal little girl – one with particular, special problems to be dealt with, to be sure, but one also who is quite certain that she will deal with them.

And, if everything goes right, she will be able to live a fairly normal life. She may remain deaf but that’s something she’ll be able to deal with, with the right training. She may need the respirator, but probably not all the time – already she’s disconnecting herself from it for short periods, testing and training her own residues of breathing ability. Realistically, a long-term goal is to have her only needing it while she sleeps. Her facial paralysis means that she can’t use her face to show emotion – she can’t smile, for example – so she has a permanent serious-surprised expression, but when those interacting with her know this and adjust to it (something that takes a bit of practice) they realise that she is actually a lively kid with a well-developed sense of fun.

Or whatever struck in her brain last year may strike again; leaving her with new handicaps, or even killing her …

What happened to Fatima was a reminder to us that the children we are caring for are very ill and that the chances that any of them can quickly turn critical and even die are continually there. And that it’s advisable never to forget that.

So I’m thinking about the continual tightrope walk that nursing chronically very sick children entails. Theoretically, to do your job properly and to be able to continue to do it well, you know that you have to keep a certain amount of professional distance, otherwise you’re not going to be able to stand it. But children have a way of undermining that distance, instinctively throwing out nets festooned with lots of clever, sharp hooks which snag in your heart and make you into a willing captive. And you can’t afford to really resist them, because the only basis on which you can build a real relationship to these little people is genuine empathy and, yes, love.

Therefore, there’s only one thing you can do; carry on squaring the circle. Realistically, it’s probably not the sort of work most of us can do full-time indefinitely.

Not without an awful lot of support, help, encouragement and continual self-reflection anyway. Which is why I’ve decided to start training next year as a clinical supervisor. It will qualify me to continue to make a contribution in this whole area, while at the same time opening new personal and professional perspectives. And while the training is going on (and probably for some time afterwards, at least part-time), I’ll be continuing to work in this area – I’ve still got to pay the bills and get through life. At fifty plus, I anticipate it being a bit of a challenge, but I’m confident enough of my ability to rise to it.

And if I need any inspiration, I need look no farther than Jenny. Now there’s someone really rising to a challenge …

 

Pictures retrieved from:

http://talkwiththepreacher.files.wordpress.com/2008/10/child-walking.gif

http://en.wikipedia.org/wiki/File:Bobbycar.jpg