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, 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.
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:
