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Chapters reproduced on the web Chapter
Twenty Four:
The Creative Use of Cognitive Restructuring:
From Marginality,
through Liminality and beyond by John Daniel R.M.N.,
R.G.N., Cert. Counselling
1/ High I
had felt uncomfortable immediately on walking into the room for the counselling
session. Besides the two chairs there were mattresses and lengths of rubber tubing
and battered telephone directories. What concerned me, though, was the pot plant,
which was having a difficult time staying alive. I remembered a Woody Allan quip:
Never trust a doctor with dying pot plants in his consultation rooms. Did that
apply to counsellors, I wondered. "But you must be
angry," said the counsellor, as we got into the session. "You have just
received a positive HIV diagnosis." I knew the moment I confessed to feelings
of anger he would have me beating the shit out of the mattresses with the rubber
tubing. "But I do feel something," I said. "I
feel exaltation." He was beginning to look slightly
at sea. The session was not going as planned. In fact
the feeling of exaltation had been my immediate response when the doctor had said
"I am sorry to tell you that you have a positive result." That dizziness,
almost a feeling of vertigo, hadn't left me. It was a month ago that I had received
the diagnosis. I was, though, beginning to feel slightly anxious that I harboured
some underlying death wish, which was beginning only now to surface. Wasn't I
meant to feel rage? Or despair? Or at least fear? Did I have the same ambition
as Quentin Crisp, who, when asked, stated that his only ambition in life was to
be a chronic invalid? Is that what I wanted? "Exaltation,"
said the counsellor. "That's a difficult one," and crossed his arms
and legs. "Aha," I thought, "Body language. He feels threatened." Silence
began to fill the room. The counsellor surreptitiously began to look at the clock
behind me, then beseechingly at me, willing me to have other, more manageable
feelings. The minutes passed and the session was at an
end. "I can offer you another appointment next week,"
he said. He looked relieved when I said I would think about it and give him a
ring. The filofax was firmly shut. Clearly, he felt out of depth in relation to
my experience. 'Exaltation', said Susan Sontag,
'was my initial response to my diagnosis of breast cancer. I realised that a very
complicated and at times empty life had become somehow simplified and somehow
fuller. I really only had one thing to worry about. My illness'
(Sontag, 19??) The
word 'exaltation' conveys a very powerful feeling. It seems Emily Dickinson had
in mind something of a powerfully exalted journey into the unknown when she wrote:
Exaltation is the going
Of the inland soul to sea -
Past the houses past
the headlands
Into deep eternity Bred as we are among
the mountains
Can the sailor understand -
The divine intoxication
Of the first leagues out at sea? I was certainly in unchartered
territory, if not completely at sea. The counsellor was
obviously uncomfortable with my feelings of exaltation. To have accepted them
he would have had to redefine his understanding of the initial emotional response
to a positive HIV diagnosis. This, he was unprepared or unable to do. The non-verbal
and not so non-verbal expectation was that if I could only experience anger, we
could start at a point in the emotional landscape that to him was intelligible
and non-threatening. As the next year or two progressed,
I tried many self-help, radical therapies. I read literature that questioned the
role of HIV in causing AIDS. I went to Scotland on a gay men's week and spent
much of the time running through the forest naked, trying to contact nature spirits.
And I came back to London with probably the worst bout of flu I have had. I learnt
to meditate, to visualise, to practice positive thinking. I danced with the Sufis,
chanted with the Buddhists, sang at Christian healing services and sat at the
feet of Holy Mothers. But the pathway grew dark.
2/
Low
"Crisis." said the psychiatrist, "You're
in crisis. We need to intervene to bring the crisis to an end." That sounded
hopeful. I had heard of crisis intervention therapy. It was a few years later.
The exaltation had passed and a dark despair threatened to engulf me. My doctor
at the HIV clinic had referred me to this psychiatrist when I expressed suicidal
thoughts. Suicidal ideation I believe he called it, which made me feel important.
Such ideation took the form of a kind of gay Hari Kari, a sort of ritual disembowelling
of myself on Hampstead Heath. But I suspected that once there, I would become
distracted by other activities. "I see from your notes
that you had two periods of depression in your twenties, one requiring admission
to hospital," said the psychiatrist. That was true. The first had occurred
in my mid-twenties, when I began the process of coming to terms with my sexuality.
It had been a difficult time. The guilt and the shame provoked by my realisation
that I was homosexual was probably due in great part to my earlier involvement
in Catholicism. I recall how, much earlier, an episode of induced guilt had occured
when I once went to a rather elderly priest for confession. I confessed the sin
of impurity. He suggested that as a young man there would be this tendency to
self-abuse, so I should get into the habit of saying the Hail Mary at the point
of orgasm. I couldn't do it then and I can't do it now. While struggling to accept
my sexuality I did go into a very deep depression and was treated with Parnate,
a mono-ammine oxidase inhibitor. It had a miraculous effect. Within six months
I had a job, a flat and I had successfully 'come out'. But the depression returned
in my late-twenties. At this time I was medicating the depression with alcohol
and illegal drugs. I was admitted to hospital and given IV anti-depressant therapy.
Anafronil was put into an intro-venous infusion and over a period of two hours
it was administered directly into my bloodstream. I remember we had to go to the
basement of the hospital to a tiny room, which only reinforced the feelings of
powerlessness and shame around the depression. The treatment didn't work. I left
as depressed as when I had been admitted. Drinking and drugging still helped to
medicate the depression, while sexual addiction, to which I was sailing perilously
close, began to provide another elixir. "I think we
need to deal first with the depression, so let's try you on Prozac." He wrote
a prescription, gave it to me and stood up rather purposefully. I realised the
session was over. "I'll see you in a month," he said. As
I walked along the corridor, following the exit signs, I knew this was not the
answer, not this time. I could accept I was in crisis,
certainly, at some sort of turning point. But I felt I wasn't getting the understanding
to negotiate this difficult terrain.
3/ Danger
and Opportunity
The first socio-physiological definition
of crisis, attributed to Thomas (1909), defined crisis as a threat, a challenge,
a strain on the attention and a call to new action, within which lay the germ
of new organisation within the psyche. The most influential
contribution to crisis theory comes from the work of Caplan (1957). This theory
is based on the concept of emotional homeostasis. An individual confronted with
a hazardous situation, which threatens to upset the balance of his emotional functioning,
may find resolution through his usual or characteristic problem-solving skills.
If, however, the hazard is of such magnitude or the situation so unrelenting that
it cannot be mastered by his customary techniques, his emotional functioning will
be disturbed, and so he experiences crisis. Caplan recognised that this state
of crisis presents unparalleled opportunities for internal boundary realignment,
for the acquisition of new ways of coping, and in so doing he recognised the constructive
potential of crisis . The Chinese symbol for crisis combines
two pictographs, one standing for danger and one for opportunity. Crisis consists,
in part, in the search for a resolution of such dangerous opportunities. Crisis
is not itself a pathological state because it presents the opportunity for personality
growth if a constructive resolution is achieved. Present crisis also presents
the opportunity for resolution of old conflicts, deriving in turn from the maladaptive
solutions of earlier crises. This attempt to elicit potential
meaning and the search for a solution was evidently a force very strong within
me. Even within the despair I knew I was being presented with something that had
the potential for effecting change and growth. Danger, I realised, lurked within
the response that saw my situation as only pathological, and therefore needing
treatment. Opportunity, as the Chinese had realised, was also present. I wasn't
quite sure what opportunity was hidden within my situation, but it was almost
like a response of faith. I knew something was there. I reflected that in medicine
up to about thirty years ago, crisis was the turning point in illness: Either
the patient's own defences would overcome the disease or he would succumb and
die. I felt like that patient, but the problem was I also intuited that the physician's
expectations were that I would succumb. Cooper (1979) wrote 'many individuals
feel that the conventional, and often well developed medical and psychiatric services
miss out something important.' This something, I have come to believe, is the
presence of opportunity. I stepped out into the crisp
air of an October afternoon, the prescription for Prozac in my hand. I walked
to the bus stop. There was a litter bin. Slowly, I tore the prescription up and
watched it fall into the bin. I wanted, I knew there must be, another way. Depression
is a major factor in living with a positive diagnosis. I suspect that a large
proportion of gay men have had the tendency towards depression prior to an HIV
diagnosis, though I would not take quite the gloomy view of researchers at John
Hopkins hospital, Baltimore, in 1993, published in a paper called 'Depressive
symptoms as predictors of medical outcome in HIV infection', which states confidently
that 'a lifetime history of depression is common in all patients afflicted with
HIV'.
Research conducted by the centre of health economics team at Hull
and York Universities, suggests that 55% of all gay men living with HIV are clinically
depressed, and this will often rise during bouts of illness to 69%.
When
diagnosed, there were two areas that I had to negotiate. Firstly I felt that a
hex had been placed on me, rather like a voodoo curse. With the current data then
available, HIV meant you first became a victim, then a corpse. This led to a feeling
of futility and loss of hope. In his study of helplessness, Seligman (19??) makes
the comment that when a person is faced with an outcome that is independent of
his responses, he learns (experientially) that the outcome is independent of his
responses. The trauma of diagnosis and this subsequent learning certainly led
in my case to increased feelings of helplessness. Seligman would link this learnt
helplessness with unpredictability, and unpredictability is beyond doubt a significant
aspect of living with HIV. It is common to develop symptoms and for the medical
profession to be unsure as to the cause. As a doctor said to me, "this virus
seems to obey the laws of chaos". Unpredictability is writ large. Why do
some die after only a few years infection, and others are healthy and strong after
fifteen years? Is it the strength of the virus, tissue type, cognitive factors?
It is all very unpredictable.
The final outcome, though, is an issue that
is somewhat more certain and has to be faced. In many
ways this whole process is a vicious circle. In coming to terms with HIV the individual
experiences feelings of helplessness, exacerbated by the sense of unpredictability
and maladaptation. This leads to emotional exhaustion and so begins a spiral of
learned helplessness. This, according to Seligman, results in depression. The
underlying belief is that action is futile. You're going to die anyway, a pretty
awful death, after years descending into physical and mental disintegration.
'All his means were a heap of old coins that would no longer pass for currency.'
(Hess, 19??) The problem here lies not just within the
individual, but also within the professions that are approached for help and support.
Much psychiatry and psychotherapy, often seemingly benign, promotes helplessness
and dependence. Their unconscious influence is exacerbation of the experience.
Such psychological helplessness then increases the risk of death. When animals
and men learn that their actions are futile and pointless, death often follows,
preceded usually by deep depression. At this stage of my journey with HIV, to
have taken the medication would have been, in my opinion, an acceptance of helplessness
and a collusion in a sort of psychogenic death. At the
time, though, I began to wonder why I had such a resistance to being helped. In
accepting care I would have had a clearly definable role, imposed from without,
maybe, but still a role. However, the role available to me was one in which I
was denied a self-determining future. It was this that I now know I was rejecting. As
the initial phases of exaltation and then helplessness passed, I began to see
my life as a journey. And so I looked at various maps that might help me to understand
the terrain in which I found myself. Looking at psychological maps of change I
found them complex and detailed, though they tended to agree on two points. Firstly,
change is a process, and it is possible to define stages or phases within it.
Secondly, as I have mentioned, the experience of change is potentially both creative
and destructive. The major problem, I found, was this distinction between creative
and destructive, that one moved through a period of a rocky territory and eventually
arrived at a point of integration, of creativity or reorientation and acceptance.
I found that both psychological and spiritual maps tended to point in the same
direction: After traversing dark nights of soul and sense, one moves into a unitive
state. Or, after a process of purgation, one moves into a state of illumination.
It was this expectation of final freedom from conflict that I found disturbing.
Although perhaps resonating nicely with my inherent optimism, these approaches
evidently fail to take into account fully that HIV leads eventually to increased
fragility and loss. The list of physical problems are daunting and overwhelming.
When the threat of dementia is added, one can feel completely in the grips of
a voracious taker of life. It is a very potent mix. To talk of integration, reorientation
or illumination at the end of such a process seemed at best wishful thinking,
at worst a cruel joke.
4/ A New Map
In
the failure of existing maps, I began to form my own. A concept emerged that I
felt might resolve the tension between these two themes. The only word I felt
that could express the journey through HIV, particularly its ending, was chaos.
There had to be a way to live creatively with this chaos. Chaos was what was happening,
it was reality and therefore had to be guarded and embraced. If that was possible,
then perhaps a new map could be drawn. After all, chaos is by its very nature
unpredictable. To accept the chaos is not just to view one's situation as irredeemable
disaster, but to actively work within it. One day I was
idly looking at books in the library when I came across one called 'Guard the
Chaos' by Hannah Ward and Jennifer Wild. The title I thought was extremely powerful
and resonated with my experiences. The book itself was a study of women and the
woman's experience of being marginalised. Hannah and Jennifer were well qualified
to write on this subject. Although both had been religious sisters living under
vows, they had met, fallen in love and created a relationship which extended into
the founding of an organisation for women called 'Woman Space'. Thus, two new
words entered my vocabulary: Marginality and Liminality. Marginality The
concept of marginalisation was something I began to explore. Maybe wrongly at
the time I equated marginalisation with victimhood. One of the overpowering feelings
when sitting in the HIV clinic was one that we were all victims: Victims of a
sexuality that was unacceptable; victims of a culture that had been unable to
form itself into a community; and now victims of a virus. However,
there had always probably been a degree of marginalisation within my life. Born
into a fairly arid, Protestant family, I flamboyantly converted to Catholicism
in my late teens. This effectively marginalised me within the family structure.
In keeping with the co-dependency implicit in much of what passes as Christianity,
I made then a decision that my life thereonin would consist of helping others.
So with a degree of self-regarding drama, I launched into situations where I was
the helper, whether with the homeless, the mentally ill, the alcoholic, or the
sick, tending always those on the margins of society. This same paternalistic
philosophy of care I took with me into my training as a nurse, R.G.N. and R.M.N.
I maintained a rigid distinction: There were the sick and there were the well.
And across the divide I was with the well. This shaky edifice
crumbled, as I have already described, during two significant bouts of depression,
the latter unremitting and only alleviated through various forms of addiction.
In my early thirties I discovered recovery from alcoholism and drug dependency
within the twelve-step movements, movements that operate as a democratic community
of brokenness, moving towards a visions of wholeness. Rejecting all outside professional
help, one experiences within these movements a process whereby brokenness and
marginalisation are effectively transformed. From my earlier philosophy, where
I saw myself as one of the well, then as one of the sick, I was now moving within
a process where I was both the sick and the well. My experience of living this
integrative approach of recovery and taking responsibility contributed greatly
to my increasing unease during the years that followed my HIV diagnosis, with
the services on offer. There is a great deal of talk today
about margins and fringes. The margins are said to be the place of the prophet,
the victim, the oppressed, the creative and the eccentric. Being on the margins
has, for some, become a vocation. The language of marginality has provided a meaningful
way of seeing and talking about the experience of not fitting in. There is, however,
a negative side to this language and imagery. To define oneself as marginalised
is to define oneself in relation to another's definition of the centre. And, as
mentioned, it is to have a future defined by others. To be marginalised is also
to be the recipient of projections from the centre. These three points I realise
were powerfully at work within the psychiatric and psychotherapeutic professions.
To keep one safely on the margins is effectively to disempower and violate the
capacity for growth. The capacity of the client to initiate and follow through
his own healing, in whatsoever form that might take, is discouraged. The abusive
potential of therapy, particularly cognitive therapy, in this respect is great,
insofar as the prospective client is encouraged to adopt another's definition
of his experience. In doing so the interest of the carer and society at large
are served. Those in the centre will continue to marginalise and keep marginalised
those perceived as a threat. This process was demonstrated recently in a well
known HIV centre when, one afternoon, a group of lads were happily watching television,
only to be disturbed by a troup of volunteers, who had returned from rather a
grand funeral, laden with flowers. With suitable solemnity and to the disbelief
of the residents, they decorated the sitting room with the funereal bouquets,
modifying the atmosphere from that of an enjoyable social space to that of a chapel
of rest. Pedestrians four floors below were no doubt mystified a short while later
to find themselves showered with carnations, lillies and crysanthemums. Redefining,
depriving someone of their feelings, as in my opening scene above where the counsellor
was apparently compelled to reframe the feelings I was presenting, is one of the
first steps in creation of victimhood. Once victims, people can be pitied. And
so begins again, with each interpersonal encounter based on such distance, the
process of marginalisation, enhanced by the fact that the centre wants to keep
you firmly on the edge. Liminality I
drew on the work of Van Gennep (1908), who coined the term liminality. Liminality
can best be described as an ambiguous, sacred, social state, in which a person
or group of persons are separated for a time from the normal structure of society.
The title of his seminal work was 'Rites of Passage'. Rite was defined as an action
which accompanies every change of place, state, social position and age. Rites
of passage mark time when structural patterns of society are rattled by movement.
One of the key functions of a rite of passage is that it facilitates positive
change by giving it a definition and a shape. I realised my HIV diagnosis and
the changes that were happening to me were a rite of passage. Unfortunately, there
seemed to be an incapacity to manage this change both by myself, among my friends
and on the part of professionals. There is evidently no existing rite to mark
these changes. Van Gennep distinguished three phases which
mark a rite of passage. First, separation; secondly marginalisation and liminality;
and lastly, agreation. The map I am proposing slightly changes and extends this.
I put separation and marginality as the first stage; liminality, beingon the threshold,
as the second stage; and agreation, or as I propose to call it, active boundary
living, as the final stage.
'I recognised that the great advantage bestowed
upon me by my marginal situation was that it was also an opportunity. It had the
potential to become liminal, that is to be a threshold to other and new perceptions'
(Daly, 1970) It is this move into liminality that I believe
is discouraged and feared by society and particularly care-givers, as representatives
of that society. Why? Liminality is to be on the threshold. It is to be at the
doorway. The person at the doorway is weak because he is not part of the social
group inside. But he is also powerful, precisely because of his unknown quality.
Because of this ambiguity involved in liminality, it is often difficult to relate
to someone in this place. They are often a repository of our fears and awe, precisely
because now they are neither of the centre nor comfortably marginalised by the
centre. They are, effectively, between the structures of society. Between would
also seem to relate to another characteristic of liminality. Liminality is characterised
by disorder and chaos. Mary Douglas explains: 'Granted
that disorder spoils pattern, it also provides the materials of pattern. Order
implies restriction from all possible materials, a limited selection has been
made, and from all possible relations a limited set has been used. So disorder,
by implication, is unlimited, no pattern has been realised within it, but its
patterning is indefinite. That is why, though we seek to create order, we do not
simply condemn disorder. We recognise that it is destructive of existing patterns,
but also that it has potentiality. It symbolises both danger and power.'
(Douglas,
19??) The above counsel, to simply accept the chaos as
a friend, may sound, like the other maps referred to above, at best abstract and
trite, and at worst insulting, particularly when you consider the nature of this
chaos in concrete terms. For me it had become a long, slow journey. Probably the
most important factor in this journey was (and is) the amount of time spent being
ill, staying in and going to bed. Feelings surface again and again of being outside
the norm, that there is a society which functions out there, of which one has
been part, but is no longer. Indeed, currently working to complete this chapter
to a deadline at the instruction of my editor, and at the same time experiencing
a number of health problems both irritating and fearful, I feel very much more
inclined to take to my bed and give up, despite all manner of support, encouragement
and other inducement. But there is still the need to be able to put a meaning
onto that experience. The worlds of illness and chronic
illness are different from the world of the well. As one gets sicker it is as
if a parallel universe starts to develop within one's life. With such a 'niggly'
illness as HIV, minor infections and accidents happen which increase this sense
of alienation from the norm - like throwing up in a restaurant; or having a virulent
attack of diarreoah in the street, while wearing white trousers; or meeting a
group of friends to go to the theatre, well protected with incontinence pads:
One feels set apart in this parallel universe. This type of illness is a dirty,
messy process, but with the mess one does very slowly and painfully begin to extract
meaning, and in so doing create one's own path. The beginning
of my path has been to feel exalted, depressed, emotionally overwhelmed, in crisis.
As the days have passed I have felt ever more on the margins. And more recently
I have felt increasingly that I am also on the threshold. The place of liminality
is the place of change between one thing and another. It can be exciting, but
it can also be terrifying. It is an experience of wilderness, a place untamed
and uncultivated. There is great energy here, but chaos
is also powerfully represented in the annihilation promised by death. It is precisely
within this realisation that death is inevitable, and that we and our world are
more disordered and disintegrated than we can possibly imagine or cope with, that
we become border people. It is some sort of alchemy, within the wilderness of
liminal space, that creates the psychic energy and courage for the shift into
active boundary living.
5/ Active Boundary
Living
To speak of boundaries is to speak of being
contained and of moving on. We have reached the border by travelling from within.
Boundaries mark the end of something old and the beginning of something new. At
the border we are exposed to two conflicting drives: To return to the safety of
marginality; and at the same time to leave. It is said that no one can live permanently
on the borders, but I suspect that living with HIV and AIDS, one learns to do
just that. At the border one is asked to account for oneself.
What are your assets? How much currency do you have? Do you have a passport? Anything
to declare? Do you carry goods? This is to be exposed and vulnerable, to live
within the chaos of a destiny out of one's control . Once having gone through,
it is also to be undeclared, to live without familiar structures such as currency,
passport, visa. It is to pass into new territory with the loss of identity. Until
we can establish, build and acknowledge a new identity, the past identity may
be clung to, but increasingly seems untenable and unreal. Marking boundaries is
at one and the same time an attempt to establish and realise this new identity.
It is to turn on its head Seligman's helplessness. Often, when we refuse to be
categorised or labelled by others, the centre will say our conduct is beyond the
bounds of reason. We are outside and may be acting according to our own reason,
indecipherable perhaps to those within the centre. In accepting the energy generated
in border country, which involves the full realisation of death and disorder and
disintegration, one approaches, I believe, a state of fullness. Fullness of darkness,
of misery and persecution, but also fullness of life and joy. All of us find it
hard to be confronted by such fullness. The border not
so much a place; more a moment of awakening and an acceptance of space between
worlds, between reality and unreality, between health and sickness, between body
and spirit. The Tibetan Buddhist tradition uses the word 'bardo' to describe this
state, bardo literally meaning 'gap' and referring also to the 'in-between' state
following death and prior to reincarnation in another life. Border living is about
being uprooted, about going beyond the limits of one's previous domain, about
making contact with a new source of power beyond the opposites. For this to occur
though, reality, including the experience of impermanence, fragility, unpredictability
and ostracism, must be fully embraced, an embrace within which we may find the
energy we need to burn to have the courage to continue on. My
journey from marginality, through liminality, into active boundary living, has
involved the shaping of a role which is different, distinct and separate from
the cultural norm. Sometimes one feels that one has been cast out. Border living
involves a certain solitariness and this brings to mind Whitehead's (1937) definition
of religion as 'what the individual does with his solitariness'. 'If you are never
solitary,' he writes,' you are never religious.' The border is a place of revelation,
encounter and change. Without identities or other status bestowed from the centre,
one can only trust and respond to the impulse that says this is the way.
6/
Conclusion
If therapists, psychiatrists and nurses
can begin to understand and respect this new map, and those that journey on it,
then I believe they can accompany and support a person dealing with the tensions
that this undertaking necessarily involves. Psychiatry and psychotherapy could
contribute to the process by initiating and creating rites of passage. This might
prove to be slightly more effective than being handed benefits and a washing machine.
'The end of our exploring
Will be to arrive back from where we started
And to know the place for the first time'
(Elliot, 19??) In
many ways I do now know the place from which I started, for the first time. At
the border we have a chance to validate and recognise professional authority in
a new form and guise. I have an excellent analyst with whom I work, a psychiatrist
who is supportive, a hospital doctor I trust and respect, and an excellent GP.
As a border person I need courage and I need their support. The operative words
are 'work with'. We work with each other and in discussion they help me to achieve
goals and aims that are realistic. I have no problem now with taking anti-depressant
medication if I need it. The view, I feel, from the border, standing alone as
an equal, is very, very different to the view from the margins, where one is an
outcaste. The experience of HIV border people is dwelling in the shadows of the
chaos of death. Yet it is also to refuse to act as passive victim and to be treated
solely as object of compassion. This is a challenge to the centre and to the professions
of care, with their sense of goodness, power and control. As one dying, I feel
disinclined just passively to ebb away; my life is one of love and reconciliation,
alongside fear and destruction. It is said that for the Buddhist the concept of
the resurrection after the crucifixion is meaningless, because the crucifixion
is the resurrection. Fear from the centre manifests subtly. It
was six months ago that I went to a respite unit after a particularly virulent
chest infection. On discharge, a very concerned doctor offered me a home help,
meals on wheels, a community psychiatric nurse, a social worker, a laundry service,
an incontinence service and a bottle of sleeping tablets. I refused all and went
on a Buddhist retreat instead. Finally putting this chapter
together and seeing the form it has taken, I realise that I have finished on the
fairly upbeat note, taking the bull of HIV and AIDS by the horn, actively creating
the role of a border person. Since starting this piece, and now, I have been encountering
some very serious health difficulties, including a drop in my CD4 count (measuring
immunity), a significant and frightening drop. I have developed constant night
sweats and an ongoing sense of fatigue, neither of which had troubled me a few
months back. My earlier working and living concepts of developing through marginality
and liminality into a bright border state have taken a large knock. I have begun
to realise that, valid and useful though such ideas are, no amount of intellectualising
can defend against the grimness and sheer messiness of this disease. Border country
or no, the terrain where 10% of those with HIV will probably dement and 40% will
totally lose bowel control is a sorrowful and bleak place. I say HIV - this is
accurate in terms of U.K. classification; but if I were resident in the U.S.A.
I am aware that the mere fact of a CD4 count below 200 would define my condition
as AIDS. I call to mind T.S.Elliot: 'You must go by a
way in which there is no way.' The failure of psychiatric
and other maps is the failure of all concerned, including the infected person,
to put into context the grimness and the potential of HIV. Psychiatric nurses
pride themselves on caring for and about people, with all manner of problems,
including HIV and AIDS. The ethical nettle which they must grasp involves exploring
their capacity to care with people. Among other things this involves accepting,
as I now do, that it just is how it is and will be what it will be. Perhaps the
most any of us may dare to hope is that we remain true to our experience.
References Daly, (1970 my marginal situation ...a threshold
to other and new perceptions' Caplan (1957) influential
contribution to crisis theory centre of health economics
team at Hull and York Universities Cooper (1979) 'many
... feel... psychiatric services miss out something important.' Douglas,
(19??) disorder spoils pattern, it also provides the materials of pattern Elliot,
(19??) 'The end of our exploring... to know the place for the first time' Emily
Dickinson Exaltation is the going Hess, (19??) a heap of
old coins that would no longer pass for currency.' John
Hopkins, Baltimore, 1993, 'Depressive symptoms ... medical outcome in HIV infection', Seligman
(19??) study of helplessness, Sontag, (19??) I really only
had one thing to worry about. My illness' Thomas (1909)
The first socio-physiological definition of crisis Van
Gennep (1908) Rites of Passage'. Whitehead's (1937) definition
of religion as 'what the individual does with... solitariness
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