Wednesday, 24 October 2012

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 21st 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:


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