Thoughts on Birth and Dying

Personal Background.

When Tricia Anderson suggested the possibility of some writings on the subject of birth and dying I started to collate a number of fairly incoherent thoughts, hoping that some coherence might become apparent. I'm not sure whether this has occurred but even if they remain incoherent I think that they might contain some value.

Both birth and death have been in my thoughts for many years. When I was writing something to formulate more clearly my spiritual beliefs I started: 'I know that it is extremely important how one is born and how one dies. I do not know why it is important.' (Credo. 1) The not knowing referred to here was in the context of spirituality; I know very well in a psychological sense why this has been important to me. My father died in 1961 two days before his 54th birthday and eighteen days before my 9th. As a result of his death I was granted a scholarship to Christ's Hospital which as well as being a public school is also a charity school so there were many fellow students who had also been bereaved. In my mid teens I became interested in Buddhism and this culminated in my going for refuge in 1995 with the teacher of a small group within the Nyingma school of Tibetan Buddhism. Tibetan Buddhism has produced a document usually translated as the Tibetan Book of the Dead. I have possessed a copy of this book since my teens. I remember taking the Evans-Wentz translation with me to university as a kind of talisman. At that time I really didn't understand its content at all. I remember the introduction written by Carl Jung and saying that if one was to read the book backwards it would describe the ideal development of the psyche in the course of a person's life. A more recent translation is by Chogyam Trungpa and Francesca Fremantle (2). This introduces the concept of Bardo. Essentially this means a transitional state. Francesca Fremantle suggests the phrase 'intermediate state' as a translation, but goes on to say that the repetition of this term would be tedious and so keeps the original Tibetan word. From the perspective of Tibetan Buddhism this life is one of many transitional states, which include dying, death and dreaming. There is an implication that each of these states is of equivalent value. Chogyam Trungpa writes “Bardo means gap; it is not only the interval of suspension after we die but also suspension in the living situation as well. The Bardo experience is part of our basic psychological make-up. There are all kinds of Bardo experiences happening to us all the time, experiences of...uncertainty” (P 1-2).

After studies resulting in a first degree in social psychology and a masters in psychopathology I trained as a direct entry midwife. My reasons for doing so were complicated and various but included the existence of the Association of Radical Midwives and I have been a member of ARM since starting my training in 1978. I mention this because it clearly implies an interest in the nature and process of birth over and above the unquestioning and unthinking adoption of practices merely because they were policy or the done thing. I practised in both hospital and the community for seven years. I have two sons, both born at home. Since their birth I have not practised midwifery, I have been a psychotherapist, but I have maintained an interest. I have been a member of the Society for Reproductive and Infant Psychology since its inception in1980. I have written a number of articles and book chapters on psychological, political and spiritual aspects of birth.

I am now severely disabled with multiple sclerosis. According to Tibetan beliefs as soon as one is diagnosed with the illness which will kill one, one is in the Bardo of dying however long this may be. I was diagnosed with secondary progressive MS in 1997 and have regarded myself as in this state since then.

I refer often below to evidence which is not referenced. I am physically unable to access these references, but they could theoretically be easily accessible on the internet.

I also refer below quite a bit to newspaper articles and television programmes. This is because I can no longer read without facilitation and having book pages turned is very fiddly. I have not sought out any particular articles or programmes; this is just what happened to be in the media. In the background to all this are the deaths resulting from the civil war in Iraq which originated with the US and British incursion, the presence of British troops in southern Afghanistan, the ongoing conflict between Israel and Palestine, US troop actions in the Horn of Africa, genocide in Darfur, conflict in the Democratic Republic of Congo, the results of Robert Mugabe's manipulations in Zimbabwe, and numerous other wars not least the mundane and taken for granted differences in death rates according to degrees of affluence and race and what Marxists used to call relationship to the means of production.

What follows is subjective. Doubtless there are misunderstandings for which I take full responsibility but I also wish to take full responsibility for my own idiosyncratic interpretations. And I must express my gratitude to Agata Radzka for her help with the computer and her patience with my impatience.

Institutional Context.

I have long been intellectually concerned with what I have described as midwifery knowledge. I mean by this something which takes as its core reference the physiological nature of the process; something which is not subordinate to the biomedical, which is different from but equal to the biomedical, which will refer to the biomedical but will also refer to the social, psychological, political and spiritual. I see the process of birth as a natural process. I am aware that the word nature is somewhat taboo. It is taboo because it includes processes and experiences which people would rather not undergo such as disease, pain and death. But a primary tenet of Buddhism is that life is suffering and that the attempt to avoid this suffering only increases its degree. My experience both as a midwife and a psychotherapist underlines this. If a midwife is to support a woman in labour without recourse to the pharmacological, she must be able to tolerate being in the presence of pain without attempting to take it away. She must understand that pain can be productive. As a psychotherapist also it is evident that much psychological pain is caused by the attempt to refuse to experience underlying trauma.

I've written elsewhere (3) about what I call the four dangers of sex, death, madness and love. They are dangerous because they are emotionally threatening to those who deal professionally with childbearing women. They are, I believe, the main reason for the perpetuation of individual practices and institutional structures which continue to deny the strength physically, socially, sexually and spiritually of the phenomenon of birth, which therefore also deny the power of the experience for the woman and which minimise the extent to which the midwife forms a relationship with her client. This perpetuation is deliberate and probably rarely conscious.

In the affluent world the late 20th and early 21st centuries have seen the normalisation of public displays of sexuality in the mass media in the context of an ostensible belief that society is post feminist. It is my belief that, in fact, this perpetuates the continued exploitation and commodification of women's sexuality. It seems notable to me that this phenomenon coincides with, in Britain, very low rates of breast-feeding and an increasingly high rate, above one in three in some hospitals, of caesarean section. In other words this display of sexuality (which bears no relation to my experience of sexual expression) seems incompatible with the physical nature of the reality of motherhood. I do not believe that this sexualisation represents a particularly healthy attitude to sexuality generally. I have no evidence that midwives, still less the wider society, have taken on the emotional implications of what I believe to be the intrinsically sexual nature of conception, pregnancy, birth and the relationship with the newborn. I discussed this superficially in Labour and Sexuality, where I described the way in which the process of labour and giving birth can be perceived in sexual terms. I didn't mention the way in which the mother-baby relationship can also be described in these terms. It is recognised that some women (and men) find breast-feeding distasteful because it evokes sexuality and they do not do it for that reason. It has also been recognised that women who do breast-feed sometimes experience sexual feelings, even orgasm. The Freudian concept of libido recognises that all relationships have sexual elements and I would maintain that this is appropriate. Current attitudes to paedophilia (which strike me as somewhat contradictory: they are overdramatised for reasons of prurience and media sensationalism, simultaneously condemned in an inflammatory and scapegoating way and encouraged by commercial concerns based on the sexualisation of children for monetary gain) can get in the way of appreciating the sensuality of the inevitably tactile contact with small children. Sexuality is something larger than just adult relationships. It does not necessarily imply genital contact and expression. (4)

Madness seemed to me to be a problem because of what psychoanalysis rather misleadingly describes as psychosis. Within psychiatric orthodoxy psychosis is considered an illness, such as schizophrenia or bipolar disorder, while within psychoanalysis it is considered a normal developmental stage: one where in early infancy the child has no sense of a bounded self. Mothers of very young babies, by empathising with them, may find themselves also in a place where their sense of self is somewhat shaky. Pregnancy involves the experience of another human being growing within one's body, separate from one's self but for most of the gestation utterly dependent upon one.

But babies grow and develop and mothers of healthy babies eventually leave this primary maternal preoccupation, as Winnicott called it, behind. Midwives however are constantly in contact with it, either empathising with it or struggling not to do so.

The relationship between a mammal and her newborn is probably the strongest and fiercest in the natural world. Let us call this love. We have all experienced this whether or not we have gone on to become mothers and witnessing it in others can evoke strong emotions. These emotions can include envy if one's own experience of babyhood was lacking or guilt if one can consider one's own mothering as less than optimal. And women are very good at finding reasons for self criticism.

When I first formulated the concept of the four dangers I considered that death, in midwifery, was more taboo than in various other branches of nursing and medicine because it was statistically less likely. Practitioners in the fields of geriatrics and palliative care, for example, tend not to see death as failure in the same way. It seems evident to me that there was a myth of an attainable zero mortality rates in the maternity services. But I think I underestimated the extent to which this applies to other branches of medicine and nursing because I had, at that time, little personal experience of them. Generally speaking it seems that palliative care is limited to those diagnosed with cancer and that death is denied just as much in, for example, neurology. But I think that maybe in childbirth the relationship with death is unique. Illnesses, terminal or otherwise, are not chosen. Childbirth is not always chosen but it is socially considered to be a cause for celebration. Yet it must inevitably bring both mother and child to the valley of the shadow of death and this is somewhere which, in affluent countries, we avoid. There are for example no socially acceptable male initiation rites which might bring young men to a place where they experience and overcome danger. Yet when women have babies, however much they try to avoid this place of danger, they cannot.

I do not mean to imply for a moment that professionals should not try to minimise mortality for both mothers and babies to their utmost ability. (This statement does not necessarily imply greater involvement of obstetricians; there is sufficient evidence to demonstrate that good quality midwifery care is safer for low risk women than obstetric driven care.) But I do think for psychological and spiritual reasons that it would be better to accept on a deep level that birth and death are intrinsically entwined. Obstetricians frequently say that the journey down the birth canal is the most dangerous journey one can take. I think this is an exaggeration: I live in Hackney, inner London, and I can recommend far more dangerous journeys. And, unless there are compelling reasons such as antepartum haemorrhage or fulminating pre-eclampsia, the journey through an abdominal incision is more dangerous for both baby and mother.

But when a woman is in labour however sensitive and punctilious her caregivers she must undergo the experience alone. She must subjugate her autonomy to a process of nature. Or she must subjugate her autonomy to a surgeon's knife. This process of birth teaches a sense of proportion akin to that of dying. In Norse mythology women who died in childbirth were admitted to Valhalla: they were granted the same status and honour as warrior heroes who had died in battle.

Affluent societies seldom acknowledge this proportion. People are far more comfortable with the hubristic belief that death comes at an 'appropriate' time, in old age. If midwives are to give optimal support to women in labour they need, whatever the social norms, to take on board the perilous nature of the journey both in terms of realistic risk assessment and in terms of the woman's psyche.

The institutions in which women usually give birth are not conducive to midwives offering optimal care to women. Optimal care means continuity of carer where the carer is not only skilled in all aspects of midwifery but also able to accept uncertainty both of timing and outcome and is sufficiently self-aware to know when things are impacting on her own psychological processes in a way which may interfere with her ability to perceive the woman's needs. At the moment (January 2007) maternity services, along with other NHS provision, are under severe financial threat and independent midwifery, which as an institution provides the best examples of good quality care, finds its very existence threatened by a move from the Department of Health which insists that all practitioners, including complementary and alternative practitioners and by logical extension independent midwives, have indemnity insurance. Independent midwives have been practising without insurance for a number of years since the RCM withdrew its cover in 1994; for a while no other providers were willing to provide cover for premiums which were affordable to midwives and of late there has been no provision at all. But notwithstanding these immediate threats it has seemed to me that the institutions have been utterly resistant to altering their structures in a way which facilitates decent, individualised care. It is obvious that where case holding practices exist their outcomes are evidently better on every criterion. For many years now the Albany practice has been exemplary. But this pattern of practice is rare and contemporary financial threats are aimed at birth centres and midwife led units. It is easier to pick off services provided by lower status staff than medical consultant led services. This institutional resistance which seems unshakable I find most easy to understand through reference to the works of Isabel Menzies-Lyth (5 ) who described how certain institutional structures mesh with the individual psychological defences of staff. If rigid institutional structures are maintained the staff don't need to take on the psychological realities of the clients or themselves. The four dangers, or any other such psychological dangers, can be ignored.

One way in which the meshing of rigid institutional structures and individual psychological defences manifests itself is in task differentiation and allocation. During the time when I was closely involved in midwifery there were two major attempts to introduce structures whereby nurses would offer holistic care to patients. The first was called 'total patient care' and the second 'primary nursing'. Both failed, and the ostensible reason for their failure was cost. The excuse of cost marks the different status and value put upon certain tasks, people and relationships. Dealing with machines has higher status than dealing with people; touching people has lower status than talking to them; dealing with bodily fluids and excrement is of extremely low status. In Britain, although I believe this is not the case in Germany, physiotherapists prescribe exercises which are carried out by carers. Their time and qualifications are of too great a value for them to carry out hands on tasks. I've heard of situations in North America where women in labour lie alone attached to a cardiotocograph while the single obstetric nurse sits at a central station and reads the output of the machines. In Britain, in some places, postnatal care already cut to a minimum, is carried out by maternity care assistants. Yet the emotional value of these two last tasks is invaluable in terms of physical and psychological outcome for mother and baby; and any measurable outcome at this perinatal time can influence, for better or worse, the quality of the relationship between the mother and child and this, in turn, can affect the neurological development of the child. This cannot be easily measured or priced and therefore is considered of negligible value. When institutional structures, individual psychological defences and cost come together they form an impregnable barrier.

The delivery of care for childbearing women is therefore, on the whole, provided within rigid institutional structures. This may be denied by those who manage these services but those who provide care which is truly women centred know the difference. There is a certain amount of deception around care of the dying as well. People advocating euthanasia or assistance in the dying process are frequently told that this is not necessary because of the quality of palliative care. But, as mentioned above, palliative care even when it is available is realistically limited only to those with cancer. Averil Stedeman advocates choices whereby those terminally ill may be encouraged to avoid unnecessary life prolonging interventions. But would such choices include a Dignitas-sized administration of barbiturates? And if not then who is taking the responsibility for whom? An article in the Saturday Family section of the Guardian on 16th December 2006 was making the point that while people often say they wish to die at home they do not realistically understand the extent to which this puts a burden on those caring for them and it may be better for all concerned if the dying person transferred to hospital. The article quoted a psychologist who had previously practised as a nurse who cited the maternity services as an example of good practice in the provision of choice. She used the idea of birth plans as an example. This seemed astoundingly naive to me. From my perspective on the whole pregnant women make birth plans which are then systematically sabotaged so that the women are forced to fit into the structures and expectations of the institution. So this comparison seemed inadequate to me. Women's choices in childbirth, for example, around pain relief in labour are often to the benefit of the institution. No pharmacological pain relief for the mother is ever to the benefit of the baby and is of arguable benefit to the mother. But when choices are offered the pharmacological is often the first thing to be offered and if epidurals are offered less freely than previously this is probably a reflection of a reduction in midwife numbers. I remember a time when epidural anaesthesia was being heavily promoted. This promotion reflected professional politics. The more birth is seen to involve medical intervention the more necessary anaesthetists and obstetricians become and the more redundant midwives are, their role easily undertaken by obstetric nurses; or their professional competences are redefined and their autonomy limited. Anaesthetised women or women under the influence of analgesia are often easier to 'manage'. They may be silent because they are essentially intoxicated or uncomplaining and rational because they are anaesthetised. They do not need the assiduous, moment to moment, attention and emotional support which would see them through without pharmacological intervention. The provision of this kind of care is an intrinsically midwifery skill. It requires time and a certain attitude of acceptance. But if women are to avoid unnecessary pharmacology they need to trust the process and to trust their attendants. They need continuity of carer and for the carer also to trust the process.

Although I am evidently critical of this laudatory comparison of the maternity services and those provided for the care of the dying such an analogy does seem to me to indicate that however poor the maternity services, at least midwives exist. When people are dying this fact is often denied, by professionals to the relatives, by relatives to the person affected. There is no secular tradition of sitting vigil. A friend of mine was sitting with her dying father and her brother asked 'what is the point?' The point seemed self-evident to her. Yet it could be that, as with women in labour, the wrong person can inhibit the process. I get an impression that people often die when their relatives are absent. In a secular society there is no accepted concept of what lies across the river Lethe. If a profession within nursing existed to support and facilitate the natural process of dying, it would therefore be important to train nurses to avoid any kind of dogma. What they would need is what good midwives and psychotherapists need which is the ability simply to be with, to wait and accept, to adopt the recommendations made by John Keats (6) when he wrote of negative capability, ‘when a man is capable of being in uncertainties, mysteries, doubts, without any irritable reaching after fact and reason’. But then although it has unpredictable aspects birth is considerably more predictable than death. The analogy is clearly limited.

It seems quite easy to me to describe the optimal conditions for the delivery of good quality maternity care. There should be a network of professionally autonomous case holding midwives who can practise in the home and in hospital, who could refer directly to consultant obstetricians and to whom in return consultant obstetricians would also refer. They should be able to determine their own working patterns and hours in accordance with the unpredictable nature of the onset and duration of labour. Hospital maternity departments would be staffed by obstetricians and obstetric nurses and when midwives needed to transfer their clients they would be assisted by obstetric nurses unless the direct input of an obstetrician was necessary. In that case, depending on the circumstances, they may either assist the obstetrician or, if technical expertise outside their field such as theatre nursing is required, provide doula like assistance to the women in the knowledge that continuity of a known and trusted care provider enhances the experience for the women on every criterion. They could choose to be self-employed, in which case affordable indemnity insurance should be provided by their professional organisation, or they could choose to be employed by the NHS.

It seems less easy to describe an analogous system for the care of the dying. Maybe there could be an increase in the number of palliative care nurses who could form similar networks, referring to consultants in which ever speciality was necessary, providing care in the home for those who wish to die at home and support for those relatives who wish to be more actively involved and also working in hospital in any department where there was known to be a patient dying. This would raise the status of the process of dying, recognising it to be an important transition, whatever the spiritual beliefs of the person concerned and their relatives. But while with childbearing the onset, length and progress of labour is unpredictable it must necessarily occur within certain time limits. Death, though inevitable, is in no way so predictable. The abnormally high winds of January 2007 were responsible for the death of a two-year-old in an affluent suburb of North West London when a wall collapsed. In addition to this uncertainty there is the impregnable barrier referred to above: rigid institutional structures, individual psychological defences, and cost are in this case joined by low status work and the ultimate taboo.

On the 23rd March 2007 the Radio 4 programme Desert Island Discs featured Raymond Tallis who was described as a professor of geriatric medicine, a philosopher, novelist and poet. As a geriatrician he was experienced in witnessing the deaths of patients; as a philosopher and poet he described the way in which human beings have a sense of the past and future, he understands the way in which people frame death with meaning. He has observed the raw grief of the newly bereaved. He was very critical of the situation in Britain regarding aspects of the care of the dying. Doctors are legally permitted to prescribe drugs such as opiates which may hasten or even induce death if their primary motivation is with the relief of pain but they are not allowed to do so in order to ease the process of death. (Although adherence to this is selective as the demonstrably death hastening unregulated prescription of neuroleptics for people in residential care with Alzheimer's disease demonstrates.) Indeed, in certain circumstances dying patients have food and hydration stopped: these are considered medical treatments and such treatments can be withdrawn when death is inevitable. Professor Tallis pointed out how this increases levels of pain. Previously he had been unequivocally opposed to assisted dying but he had visited the state of Oregon in the USA where it is legal and found that it is not the case that patients who choose this do so because they feel burdensome. On the contrary, such patients are those who have previously been assertive and feisty and used to experiencing a level of control and autonomy. He distinguished assisted dying and euthanasia. In the latter case it is the professional who administers whatever is the lethal dose while in the former the dying person indicates the legitimacy of their choice by taking the lethal dose themselves. Although he was implicitly opposed to euthanasia in the sense of having professionals induce death he seemed in favour of it in the literal sense of 'a good death'. When he was speaking he seemed very conscious of the process of dying and I was struck by the sense in which he saw both birth and dying are natural processes, and processes which are experienced better if they are accompanied by someone who understands them and can simply be with the person undergoing them.

There are some implications which occurred to me in terms of institutional structure and politics. Dignitas insists that their clients are physically capable of receiving and swallowing the barbiturates. I get the distinct impression that some people with degenerative conditions therefore feel the need to go sooner than they might otherwise wish. Also, proposed changes to the law in Great Britain refer to assisted dying in those who are already deemed to be terminally ill. I am not terminally ill but am physically incapable of suicide; if I were to go to Dignitas it would be to be facilitated in doing something I cannot do unassisted, much as I am helped to eat and toilet myself. Changes in the British law would not help me. Although I agree with Professor Tallis that there should be greater choice for the individuals concerned rather than the professionals.

It would seem that people who are dying have food and water denied them on the grounds that these are medical treatments. Yet it seems glaringly obvious to me that food and water are in no way medical treatments. The administration of food and water are aspects of nursing care. Yet there has been no objection to this ostensibly medical decision which undeniably increases suffering by organisations such as the NMC. The predominantly female dominated nursing profession is silent in the face of the predominantly male dominated medical ethos.

Social, Psychological and Spiritual Context.

On 29th November 2006 BBC2 showed the first part of its three hour fictionalised account of the tsunami which struck on Boxing Day 2004. It focused on a particular resort in Thailand. There had been some question about whether it was too soon to be showing such a programme, and I think that I probably sympathised with this perspective before. But I felt quite differently afterwards. Lucy Mangan writing a review in the following day's Guardian focused very much on the heartrending accounts of individuals and was also of the opinion that it was probably too soon. She said she felt uncomfortable. She mentioned that she was not used to being confronted with ethical questions while watching television. But it was the ethical and spiritual questions which struck me. More than one of the British characters remarked that the tsunami was being described as a natural disaster but there could be nothing natural about an event which caused so much death, distress and chaos. One aspect of the story concerned the fact that the dead were being cremated on the beach without having been fully identified. This outraged a western reporter and his Thai colleague tried to explain that it was being done respectfully. (There was also no mention of the fact that it would be preventing a considerable health hazard.) It seemed to me that there was a clear theme about the relative values put upon human life and bodies. The Westerners assumed that death was an aberration. The part I found most moving was not the heartrending separation of the black couple and the death of their six -year-old daughter but the part where a Thai waiter had returned to his village expecting to find survivors but instead found his grandmother and another relative dead. He built a funeral pyre and stood, his hands at his heart in the prayer position as he watched them burn. I have no experience of natural disasters or close bereavement as an adult but I learnt early on that death is part of life. Death is natural. I think it was Albert Camus who wrote 'man was born to be orphaned and to leave orphans after him'. If one loves one must grieve or cause grief. It seemed as though the Thai people depicted had a much healthier understanding of the role of death than the Westerners.

This cross-cultural difference in attitudes to death reflects, to some extent, endemic racist assumptions about the value of individual people which are manifested in everyday life in affluent countries. The tsunami gained considerable exposure in Western media because so many Westerners were involved: it occurred on Boxing Day when large numbers of Westerners were on holiday there. Aspects of life in affluent countries mean that the experience of death is rarer and in the United States, for example, where there are noteworthy discrepancies between the infant mortality rates for black and white populations which I find shocking they seem to be barely noticed; they are certainly not being addressed. Neither are deaths from preventable diseases in poverty stricken countries. There is a clear, but not expressed, assumption that the profits of pharmaceutical companies, for example, are worth more than the lives of the poor. The assumptions behind these different values are congruent with those which underlie the different status accorded to tasks in the delivery of healthcare. They are born from the same attempt to distance oneself from that believed to be menial. White is preferred over black; the intellectual over the physical; the man-made over the natural.

I don't know to what extent this difference in value relates to the need which the Westerners in the programme felt to identify and bury their dead. Certainly when people are 'missing presumed dead' their relatives say that they find it hard to accept the possibility of death. Uncertainty is hard to bear. But psychological responses to bereavement are complex, even when there is no uncertainty. Joan Didion witnessed the unexpected death of her husband but still magically expected him to come home to her. In Britain we are in an unusual situation at the moment whereby organised rituals around both marriage and funerals are becoming more personalised. When my godmother aunt died in 1998 I was shocked by the clinical and impersonal nature of the funeral service which was conducted by somebody who had never met her and which in its Christian orthodoxy was insulting to her Hindu neighbours who had attended. Yet many of the responses to death reported by the media seem to me to be marked by a degree of sentimentality I find discomforting. Not speaking ill of the dead has become an apparent inability to see retrospectively any faults at all; the proffering of flowers by acquaintances has almost become obligatory. I get the impression that speaking in a certain way to the media is welcomed as a verification of one's own importance and self validity. The encouragement of statements by the victims of crime exacerbates this tendency. (And leads to an unfair advantage for those who are more articulate or whose expression conforms to the preferred norm.) I welcome the increasing personalisation yet it seems to go with a reduction in authenticity. It seems as though the culture is developing a framework of meaning around death which is confirming its aberrant nature. In Britain, unlike Poland, it is unusual for dead bodies to be laid out by relatives. We leave that the professionals.

In the G2 section of the Guardian of 26th January Jonathan Jones was writing about war memorials. He expresses very well the concerns I have around sentimentality and public acknowledgement of grief. He is clear that memory is idiosyncratic and, frequently, inaccurate. It is not the same as history. He describes the memorial wall to the Vietnam veterans in Washington: he sees it as a work of art but, whatever it is, it hasn't prevented the misremembering of one of the most sordid episodes in American history where the most powerful nation on earth pulverised a Third World peasant country -- and lost. The memorial is decorated with American flags as if to celebrate victory and somewhere there is a description of this as a 'glorious war'. He describes a desire to share vicariously in something noteworthy. There is something about this vicarious need which relates to the way in which the concept of celebrity has developed. All that matters for some young people is celebrity -- never mind for what. How can this relate to making grief authentic? Making death meaningful? I'm reminded of the developments around dealing with stillbirth and how, as Patricia Hughes's (7) research indicates, these developments do not promote mental health. The way that professionals dealt with stillbirth changed radically. In the 1950s and before a stillborn baby would be removed from the mother without more than a cursory glance, if that. He or she would be buried in an unmarked grave. But some time during the latter half of the 20th century, on the basis of less than ten psychoanalytic case studies, practice changed so that the mother was encouraged to have much more to do with her dead baby. She would be encouraged to hold him or her, take mementos in the form of hand and footprints and photographs, and arrange a funeral service. Patricia Hughes's research found that the more a mother had to do with her stillborn baby the worse her psychological prognosis. She found the effect carried over to the psychological well-being of subsequent children. The rationale behind this change in practice was to encourage a more healthy grief response; it had the opposite effect. The apparent coolness of mothers of stillborn babies had been considered unhealthy. It seems to me that the psychological morbidity consequent on this change in practice is a testament to the exquisitely sensitive nature of mother-child attachment in the perinatal period. The mothers who had related so intensely with their stillborn babies, it seems, had become attached to them as though they were alive and were unable to accept the fact of their death. I wonder whether there is something analogous in public displays of grief. And yet I believe that when Diana, Princess of Wales, died there was something authentic in the outpouring of public grief. It was as though people had been given permission to express grief and were often expressing grief which had been long suppressed or denied. Something similar happened on the 60th anniversary commemoration of events of the Second World War. Time had passed and mores changed. Stiff upper lips had unbent a little.

I realise that I'm not being consistent here. Maybe this inconsistency is telling. Maybe it reflects a culture where death is shunned, denied when possible, yet of course is ultimately unavoidable. In the context of illness, especially cancer, it is a journalistic cliché to use the rhetoric of combat. When somebody dies they are described as having lost their battle with whatever their terminal illness was. But it is a battle which we must all lose, if we see it in those terms. The mortality rate ultimately is 100%. I think it is more graceful, as with childbirth, to see it as submitting to a process of nature. I think my uneasiness around authenticity lies not so much in the idea of the expression of emotion. I think it is healthy to weep, rend garments, express anger. What concerns me is a sense that the expression of emotion is shaped by a desire to feel reflected and validated by the media. It's possible that I have an old-fashioned sense that certain things should be kept private.

In the G2 section of the Guardian of the 21st February 2007 there was an article discussing the legitimacy of resuscitating babies born at less than 23 weeks gestation in the context of the survival of a baby born at 21 weeks six days whose prognosis must be doubtful. Professor Richard Nicholson who is editor of the Bulletin of Medical Ethics was quoted as saying 'Should one really be trying at all to keep that baby alive?... Chances are it will require an enormous amount to be spent on it for the rest of its life. We have much less experience of death, so we have become much less willing to accept it. In countries where infant mortality is higher it would be seen as absurd. We live in a society where we have become addicted to physical existence. It's totally unsustainable. Our attempts at the moment to keep every human physically alive as long as possible will make it less likely that the human race will survive climate change.'

The context of meaning within which death is understood is crucial. David Hare in an edition of Desert Island Discs was talking about his late partner and the courage with which he thought she dealt with her terminal condition by refusing to take comfort from anything other than scrupulous honesty. So someone irreligious framed the understanding of her death within the context of a concept of self. Religion, of course, frames it differently. From my perspective much religious orthodoxy comes across as comforting denial. I remember my mother telling me how, when my father was dying in hospital and she mentioned that they would meet again hereafter, he replied that he didn't believe this. Within the context of Buddhism there is belief in reincarnation but it could be argued that this also is comfort and says more about the indigenous beliefs of South and South-east Asia -- it seems to me that the concept of Anatman does not accord with any kind of surviving personality (8).

Religion provides a context of meaning for death. When I was a teenager I learnt the word eschatology which is the branch of theology dealing with the four last things: death, judgment, heaven and hell. Of the religions of The Book Christianity and Islam seem far more concerned with these matters. Judaism seems to see the afterlife more in terms of the provision of offspring in this life. It is not only the religions of The Book which are concerned with judgment and punishment. When Glenn Hoddle was forced to relinquish the role of manager of the England football team after describing people with disabilities as manifesting the fruits of their bad karma from former lives he was expressing a commonly held belief within Hinduism and Theravada Buddhism. This kind of context of meaning seems to me to serve the purpose more of social control. Every institutionalised religion embodies aspects of social control, especially misogyny. Religion is totally different from spirituality. It embodies the institutional whereas spirituality is intrinsically individual.

In the poem Ellipse quoted below infancy is equated with old age. As somebody severely disabled and in need of care on an intimate level I don't feel these two states are in any way equivalent. Children are intrinsically lovable and they grow and develop out of their dependency. My needs are problematic and are a symptom of progressive and incurable disease. When I expressed my reservations to Tricia she responded that she felt the shape which represented human existence better was that of an hourglass, implying that there is something about consciousness at the beginning and end of life which is broader than that in midlife. I discussed this with my friend Linda and, describing early infant experience, she used the word 'oceanic'. This word is often used in the context of psychodynamic theory and certain types of spiritual belief. Towards the end of life one needs to transcend ordinary day-to-day concerns and this transcendence together with the dimensions of an ocean make the shape less like an hourglass and more like the blue figure reproduced below.

The breadth of experience at either end of life links up for me also with the psychoanalytic use of the word psychosis; the danger of madness. In 1996 during a retreat my Refuge Lama said 'Tantra offers psychosis as the path.' My understanding of this (9) centred on using various practices to re-evoke this infantile state of boundarilessness, to experience connection and interdependence, but with the cognitive qualities of an adult. This links the two ends of the ‘hourglass’ for me. Given that Buddhist practice concerns transcending ego and that the reordering of priorities in the face of death requires a similar transcendence the metaphor of the hourglass emphasises the importance of the beginning and end of life. It brings together birth and dying.

There must also be a letting go of the values of the everyday. There is no point making plans for a future which will not happen. The proportions of life change; when no future is envisaged the past looms correspondingly larger. In my present reduced and debilitating circumstances I have come to the conclusion that elderly people repeat themselves not always because their memory is not functioning, but sometimes because they want to ensure that their stories survive. Uncertainty feels more manageable if one has a sense of control and this may be the only control left.

Unanaesthetised women in labour do not have the energy for dissembling. This is one reason why some midwives find them difficult to manage and encourage unnecessary analgesia and epidurals. People who have been newly bereaved are in a similar state of emotional rawness and nakedness. In both states there is a rearrangement of priorities. And this rearrangement, it seems to me, is one where values are assigned in a more meaningful way than in everyday complacency. Relationships, love and kinship, come to seem to be more important than material objects or social status. A BBC 2 programme, 16th January 2007, on a hospice and respite home for dying and disabled children showed how a room is put aside for the parents of the dead child so that they can be together. The room's contents can be entirely shaped by the parents according to their wishes, whether religious or otherwise. The nun in charge of the home talked about how important this process of leavetaking can be; she described this room as 'holy ground'.

What can this ascription of holiness mean? I referred above to those aspects of religion which provide comforting denial of the irrevocability and finality of death. But I think other aspects which reflect this non secular prioritisation are universal across religions and are valid. Buddhists sometimes use the word maya which means illusion or delusion to refer to the mindset of those who prioritise the worldly over dharma. Living in the light of death is a way of escaping maya, a way of recognising values more meaningful than the worldly. And given the ultimately inescapable reality of the hundred percent mortality rate maybe this way of living is a wise one.

My carer came in on 18th January 2007 and announced that the temperature was predicted to be 13 degrees Celsius. I replied with what I had been told the previous day which was that there was snow in Israel. She made a comment about global warming and went on to say that this indicated that Jesus was going to return with fire. I quoted: ‘the trumpet shall sound and the dead shall be raised, be raised incorruptible’ and went on to wonder what happened if one had been cremated. She replied with utter certainty that whether one had been buried, cremated or drowned at the second coming one's body would be formed anew and, instead of thinking that this was evidently unscientific comforting denial, I was filled with wonder and a sense of understanding that spirituality was deeply imbued with paradox. Believing the impossible may open a gap through which imagination can work and intuitive truths can be grasped. I cannot be coherent or consistent about this. I maintain sufficient faith in scientific materialism to find the belief that though worms shall devour my body yet in my flesh shall I see God literally incredible and yet I have a sense, apprehended through a faculty other than cognition, that there is a transcendent reality which can be grasped and realised by Mind. What led Don Paterson to feel the need to produce versions of Rilke's sonnets to Orpheus? (10) If the Sonnets arrived as an unasked for gift one might believe that some being had sent them or that they had arrived through the kind of gap created by believing the impossible. Don Paterson goes on to describe how these 54 poems were written in thirteen days and that this kind of inspiration is not normal. Rilke described it as 'enigmatic dictation'. Don Paterson says that in earlier days this phenomenon would have been described as prophetic. He saw Rilke as a receiver of cultural perturbations which less sensitive or attuned people would not pick up. He goes on to say 'we are real objects in the universe, and so just as affected by vibration as anything else; however, we continually act as if we are immune, and tend to dismiss the 'sufferings of the artist' as either mere drama-queenery or, at best, neurotic excess.' He sees the artist as putting themselves in 'the way of a dangerous kind of sympathetic resonance'. Don Paterson's belief in scientific materialism includes the assertion that the mind is part of the body, sharing each other's ills.

When I first read these words of Don Paterson I was deeply moved. I was excited that someone could bring together what he described as scientific materialism with a sympathetic understanding of sensitivity to vibration and a caustic criticism of the values of a species which almost gleefully is destroying its own habitat. My spiritual beliefs are deeply agnostic. I am drawn towards certain aspects of Tibetan Buddhism and I feel compelled to follow this gravitational pull. I believe that I have met people who have a sensitivity to cosmological forces and patterns. I believe that Tibetan Buddhism explains these metaphorically. This is why it is necessary to have an imaginative fluidity of understanding. I find this fluidity difficult; I am given to too much literalism. I think I am immune to the placebo effect. Maybe this is a blessing. Don Paterson says that he was dismayed to find these particular Sonnets recruited to the literature of the spiritual where spiritual implied a 'defuse and torpid sense of well-being... little more than a sort of generalised call to political inaction.' He says that the Sonnets refute two principal errors of religion. The first is the belief that truth is the possession of an inscrutable, divine third party rather than allowing that it is the human species which thinks, perceives and creates truth. 'Sheer wondering inquiry (is) the central sane human activity.' He says that the second error is to postulate an afterlife or reincarnation. 'This projection of ourselves into the future beyond our deaths warps our actions in, and therefore our sense of responsibility to, the here and now.'

I do not want my spirituality to be comforting denial. But I also do not want my philosophy to be that of reductionist scientism.

Midwifery Matters No 111 Winter 2006 published A Beginning and an End by Cassy McNamara (10): this is a beautiful short piece describing her father's death which occurred in the context of her being on-call for home births. Her father was diagnosed with cancer of the bladder. His wishes for treatment were 'no tinkering about and tubes'. She described how his family tried to remain optimistic but added 'hope is always an expression of fear'. And she described acceptance, surrendering to the inevitable. This was an expression of her father's personality in life. She compared this to the birth she supported soon after. The mother 'faced her labour and the birth of her child with courage and the conviction that her choices were the right ones... at the time she was afraid and in pain but with support she reached the inevitable end of her journey.' She goes on 'as midwives I think we all know that birth and death are close... life and death, birth and dying are all hard to bear, but with courage, strength, support and love we can all face them and become a stronger person along the way, grateful that they mattered so much to us.' And she goes on to quote TS Eliot 'I had seen birth and death, but had thought them different.' And Cassy goes on to say 'they are not different at all.'

This equation of birth and death relies on an understanding and respect for natural processes. I think that this understanding and respect are at the core of midwifery knowledge. This identification relates, for me, to Don Paterson's description of human consciousness as described by Rilke in his imagining of Orpheus. Because we have conscious foreknowledge of our own death we act and conceptualise as though we are already history. This knowledge enables us to imagine that our existence has a meaning. We deny contingency and fate. So the Westerners in Thailand could deny that the tsunami was natural. I may take comfort in the idea that I will survive after my death in the memories of those who know and love me but that survival is very definitely finite. In order to be with those who are birthing and dying it is necessary to tolerate uncertainty. Don Paterson described humanity and its struggle with this knowledge not as dual so much as a riven. He created these versions of the sonnets to Orpheus so that he could learn them by heart and I infer that he wanted to do this to make good this intrinsic rift. He describes Orpheus as using song to exist simultaneously in the land of the living, the land of the dead and atemporal eternity. He describes human song as unique. Birds sing because it is their nature to do so and in the same way humans talk. But human song is not natural. It is art. It comes to us through the gap our imagination creates. Through this same gap we can apprehend imaginative and spiritual truths. We can be both with the birthing and the dying.

Two books have been published comparatively recently, Philip Pullman's The Amber Spyglass (12) and Ursula Le Guin's The Other Wind (13). Synchronistically both describe the dead needing to be liberated from an afterlife in which they are confined. Philip Pullman is explicit in his belief that it should be possible to love the material to the extent that one can relish the possibility of one's constituent atoms being indestructible; death means being re formed. We are stardust...

The song After the Deluge includes in the chorus the words 'let creation reveal its secrets by and by/when the light that is lost within us reaches the sky'. I interpret this to mean: don't be over analytical; don't be over scientific, in particular let atoms be; rest in negative capability; you will discover soon enough your relationship to the cosmos.

Richard Thompson's song Crazy Man Michael, which was written when he was still a young man, describes the mythic meeting of Michael with a raven who offers to tell him his future and goes on to say that 'your true love will die by your own right hand'. Michael, in his fury, takes out his dagger and strikes down the raven only to emerge from his rage to realise that his lover is lying dead on the ground before him. The last verse goes 'Michael he whistles the simplest of tunes/and asks the wild wolves their pardon/for his true love had flown into every flower grown/and he must be keeper of the garden'. I find this beautiful and moving and it reminds me of what I know of Rumi. He was a respected man within his community, a lawyer, married with children. And then he met Shams i Tabriz and fell into a condition of inspired love. Shams left, never to return, and poetry flowed out of Rumi in abundance. Both crazy man Michael and Rumi found the experience of bereavement liberating, plunging them out of the day-to-day taken for granted reality into a world of inspiration and creativity. Can the consciousness and acceptance of death similarly enliven my life?

I am aware that in referring to Don Paterson, Richard Thompson and Rumi I am referring to the products of creativity and imagination. It seems obvious that these processes, rather than any kind of dogma or doctrine, are at the core of my understanding of spirituality. My spiritual beliefs, based on Tibetan Buddhism, involve practices such as mantra and visualisation and veneration of the teacher. They inform and provide a context for the meaning which I wrap around the phenomenon of death. I am certain that if one is to accept the inevitability of death an analogous context of meaning is required.

Personal Epilogue.

When my friend Linda, talking about Tricia's metaphor of the hourglass, used the word 'oceanic' and talked about what one sees if one gazes into the eyes of a newborn baby, I was reminded of Yiddish folklore where the open navel and closed mouth of the unborn baby allows all wisdom to enter but how, at birth, when the mouth opens and navel closes it is all forgotten and must be rediscovered during the course of one's life. Of course there is the implication that during the course of one's life one can rediscover wisdom. Linda said initially that the constriction of the hourglass begins at birth but then corrected herself when she thought about how physical birth does not coincide with psychological birth. She said she thought that the constrictions begin with the construction of a sense of self. At the other end, if death is being contemplated and made meaningful, then self must be transcended. This is a basic tenet of Buddhism. She was talking about how at the present time, nearing 60, her workaday self is well constructed and efficient but she is feeling as though her feet are somewhere not entirely solid and that there is an undertow of liquidity. I used the metaphor of mould. In comparison with a phallic, upright plant, mould sends out subterranean filaments. It evokes the image of Ursula Le Guin's concept of women's magic as bramble like: lowly, entangled but virtually indestructible. As a development of the metaphor this shape is much more congenial to me than the breadth of the equator of an ellipse.

However in my present condition it is hard for me to access creativity and imagination. As my ability to move has diminished it is obvious that movement relates to a sense of autonomy and also to the process of cognition. The government has recently made more money available to carers and the news item illustrating this portrayed the life of a woman who is a 24-hour carer to her twenty-year-old daughter with severe autism and a mother with dementia. Her attendance allowance for this is less than £50 a week. I am conscious that I am burdensome and expensive and I am reminded that in 1973 the Japanese composer and percussionist Stomu Yamashta brought his latest work to the Roundhouse in London. I saw it two times. The narrative included an occasion where an old woman was taken up a mountain to die. It was her time. She accepted her fate for the good of the wider community.

I am a member of Dignitas. It makes me feel safe. To quote the song on Pink Floyd's Dark Side of the Moon 'I am not frightened of dying…'. It's the details of living of which I am profoundly afraid and it is a comfort to me to feel that I do not have to tolerate the intolerable. I am aware that within the context of Buddhism this is a wanton squandering of a valuable human life, and human life is valuable because it offers a degree of suffering such that one is impelled (if one is sufficiently wise) to learn the basics of what ultimately could lead to enlightenment. But I don't want to pretend. My friend Kate was discussing the use of a hoist and she said that two people were needed really only if the user had a condition like cerebral palsy and was prone to making involuntary movements or was incapable of understanding what was happening. This is my community now. My personal experience is not moving me towards greater wisdom and understanding but frequently towards a sense of diminishment, meagreness and paucity. I am aware of feeling excluded, of anger, fear and envy.

I've given some intimation above of belief systems and writings which provide inspiration and a context within which death can be framed and there are occasions when I feel in contact with this framework. But much of that time I feel limited and confined, both by my geography and my body. When I read Don Paterson's versions of Rilke's Sonnets I found it painful. I used to sing -- as part of my practice, to and with my children, at Forest School Camps, as performance -- and now I can no longer sing, just as I can no longer walk. The Guardian Saturday Review (3rd March) featured an anthology by Edwin Morgan. I don't know his work, though I've heard of him. The reviewer begins ''what is it to be old, and to have lived one's life? We get sick, and crippled.... If we are artists or poets we may develop a "late style" of the kind noted by Edward Said, which "has the power exactly to render disenchantment and pleasure without resolving the contradiction between them".” Morgan, apparently, is 87. He reminds the reviewer of Walt Whitman both I gather because of his verbal generosity and also because of his sexual orientation. It seems that he is now able to be comfortable with homosexuality, that he wishes to express himself openly on this before it's too late. And she quotes a wonderful final paragraph: "it will not be denied/in this life. It is a flood tide/you may dam with all your language but it breaks and bullers through and blatters all platitudes and protestations before it, clean out of sight." I am so envious of the ability to hold the contradiction. I find the pleasurable too painful. I rejoice in his new-found comfort with his sexuality but I am envious also of his comparative autonomy and of his ability to feel a connection with love. No doubt the two are connected. Much of the time, probably most of the time, I keep myself in a state of numbness to avoid feeling the incremental dripping of relentless loss after loss. Edward Morgan is 87. I am 54.

Sometimes it is as if honesty, an honest awareness of responses which are negative and generally considered shameworthy, is all I can manage and is somehow creditable. I identify to some extent with David Hare's late partner. When I heard him praise her on Desert Island Discs I thought of my friend Linda and knew that when she heard this she would think of me; but my response was to think that the partner was dead and David Hare was still alive and had another partner. I know that there is a framework of spiritual practice whereby this ostensibly negative feeling can be experienced as pure energy. I cannot do this. But I know that there are those who can. I have received teachings and, I believe, transmission from teachers including Chhimed Rigdzin Rimpoche. If I am to find some solace in the belief that, as I exist, the atoms formulating my body were produced in a dying star and that when I die they will be reconstituted because matter is neither created nor destroyed then I also find solace in the belief that energy is neither created nor destroyed and there are those who can experience this without any mediation. Rabindranath Tagore wrote:

Is it beyond thee to be glad
with the gladness of this rhythm?

To be rocked and tossed and broken
by the whirlwind
of this fearful joy?

December 2006—April 2007

Ellipse

The doorbell rings
and flowers are delivered.
Visitors arrive, creep in to see.
Even a casual passer-by will know
if this is a coming or a going.

In the bedroom, centre of attention,
someone small and wrinkled lies awake,
too young to smile or speak, or even watch.
All she can do is take
her mother's milk; excrete and cry and sleep.
In return she gives them joy and hope,
delight in her new life, her innocence.

Bustling woman, seldom sitting down
deceiving herself that all she does is give
to children, parents, others who, to live
must feed and ask, depend on her and take.
Sometimes so much to do she doesn't know
if she is coming or going.

In the bedroom, centre of attention,
someone old and wrinkled lies awake,
able to smile but lacking strength to speak.
Nappies again, and needing help to drink;
All she can do is take.
In return her eyes give out her love
She watches with concern as others grieve
to lose her gifts, not knowing that she will leave
a store of wisdom and experience.

The ellipse of life the perfect symmetry.
Wide in the middle, ends
both gently narrowing.
There's mystery in
this similarity
of coming and
going.