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Life to be LivedChallenges and choices for patients and carers in life-threatening illnesses$

Catherine Proot and Michael Yorke

Print publication date: 2013

Print ISBN-13: 9780199685011

Published to Oxford Scholarship Online: January 2014

DOI: 10.1093/acprof:oso/9780199685011.001.0001

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A wealth of resources

A wealth of resources

Chapter:
(p.129) Chapter 14 A wealth of resources
Source:
Life to be Lived
Author(s):

Catherine Proot

Michael Yorke

Publisher:
Oxford University Press
DOI:10.1093/acprof:oso/9780199685011.003.0014

Abstract and Keywords

It is comforting to know that the response to illness can be positive. This chapter summarises practical, psychological and spiritual ways towards this end. Many people feel lonely in their suffering and find professional or peer support restorative. Attempting to find something meaningful to fill the day, people can learn new skills and crafts or revive old or much loved occupations. Writing and artwork can help to have conversations with oneself through which a bearable meaning for the loss can be found. Some people receive nourishment and succour from the simplest things. They can sit and watch a bird, listen to music, pray or meditate and to them that is life giving. Intimate relationships can be a haven of mutual trust and loyalty and new patterns of sharing life can be invented. At the heart of coping with the challenge of illness is acceptance of it as a reality. This is not very easy and it is not a constant state.

Keywords:   positive response to illness, peer support, artistic expression, spiritual nourishment, intimacy, acceptance, coping with pain, support groups

Where do patients and carers find the strength and courage to live with dying? What nourishes and supports them? In this penultimate chapter we look more specifically at things that may help people when they are confronted with life-altering illness. Many of these suggestions have been highlighted in the stories we have already recounted and may seem repetitive. However, we feel that it is appropriate to summarise resources relating to questions implied in the title of this book Life to be Lived.

From being the subject of suffering to an observer of pain

Earlier we have described personal sources of strength such as values, attitudes, absorbing interests, prayer, and the solace of nature. These resources relate to ways in which the illness and the process of dying can be taken on board. Individuality is the key. How personal wells of strength can become a resource is strikingly described by Martin Laird (2006 pp. 106–107), who distinguishes physical pain from suffering. By the latter he means the stories people tell themselves about their pain. He gives an account of Elizabeth, who was struck down by an auto-immune disease that caused her great pain. When she fretted and fussed about the pain, it increased. In Laird’s words, she suffered as a result of what her mind did with the pain. However, when she relaxed and accepted the pain, its impact on her was reduced. Elizabeth found that her thoughts about pain were worse than the pain itself. Gradually, with practice, Elizabeth was able to let go of her pain and she felt alive and aware. She moved from being the subject of suffering to an observer of pain.

Somehow suffering dramatises the pain and makes it harder to bear. Keating speaks of the ‘afflictive emotions’ by which people respond to the experience of pain. He distinguishes four upsetting emotions, or combinations of emotions, that we put into place to protect ourselves from pain. Firstly, he cites anger. Secondly, apathy which can present as pervasive boredom, bitterness or recurrent frustration. Thirdly, he mentions lust or the overweening desire for (p.130) satisfaction whether physical, mental or spiritual to compensate for the intolerable loss. Fourthly he cites pride which may be experienced as self-rejection or self-inflation (Keating, 2003 pp. 23–24). Awareness of afflictive emotions can be a way of moving from being a victim of suffering to being a witness of pain.

Kabat-Zinn (1990, 2003) bases his ‘Mindfulness’ approach on learning to focus on the pain. Letting their breath flow into and out of the painful area, patients are invited to be aware of any pain without trying to change it. Surprisingly such mental activity reduces the pain rather than increasing it. Such thinking seems to cause some mental separation from it, so that patients are no longer fixated on the cause (Heyse-Moore, 2009 p. 67). As the patient’s anxiety reduces, so does the pain. On the other hand, if we dwell on the pain, it seems to increase. Thus we can see the possibility that our awareness of a pressure point can be stronger than our emotional or physical distress: perhaps a case of mind over matter. Mindfulness has successfully relieved patients of chronic pain, both malignant and non-malignant. It is not a quick fix though, and people need to practice regularly to benefit.

Other resources to try and change the experience of pain are relaxation and visualisation (Ferrucci, 1982, Glouberman, 1989, Johnson, 1986). People are invited to imagine a comfortable and safe place and to notice what they see, hear, smell, and feel. The strength of the method lies in its association with images from the person’s memory, thus enhancing the relaxation. Sometimes visualisation is extended to facilitate an encounter with a significant figure as a source of advice and wisdom, which can have a powerful effect. The Bristol Cancer Help Centre (Hayes et al., 1990) has devised a care model using visualisation to imagine fighting the cancer cells as an invading force, and this, they have found, can boost a patient’s immune system.

Professional and peer support

When people get stuck, counselling can help with releasing the loss, anger, and resentment that may be lingering. It is also a place where it is possible to explore how to negotiate boundaries, an important skill in dealing with issues of transition and conflicting expectations.

Therapists working with patient groups seek to provide a space and time for the group members to help and support each other. Jennifer runs a stress-reduction course for women with primary breast cancer. She organises so-called ‘refresher groups’, where patients who have participated in a course come back after a while to share their experiences. Meeting with breast cancer survivors proves very helpful to the patients. Their feelings and worries may (p.131) be normalised by hearing ‘survivors’ tell of their struggles and how they have coped. She told the story of Maureen:

The Breast Care nurses who thought she needed some help with anxiety had referred Maureen, a woman in her thirties with a young child. I was not sure whether her anxiety was in response to a very pessimistic diagnosis or whether she was excessively anxious in her dealing with everyday life. She joined the relaxation group and found it really helpful, but the anxiety persisted. She asked if I could see her for counselling privately.

She had decided to go back to university. This was normalising, but caring for a child, while doing a university course and running a home, placed much on her plate, not to mention the overriding anxiety about her illness: Would she be well? Would she stay well? How long did she have? Would the cancer come back?

The GP put Maureen on antidepressants. It helped taking her off the bottom but she would get so anxious, she forgot everything. She just panicked. When Maureen came to a refresher session something very good happened to her. She had a chance to talk about her anxiety and other people said they had felt the same. She phoned me to say how helpful she had found that support, how she could really hear it and take it in.

When meeting people who have gone through similar ordeals, patients feel less alone. This does not mean that other people’s solutions are necessarily right or welcome.

One of us remembers a woman being treated for breast cancer saying how fed up she was by the number of people inundating her with tips about books to read and diets to follow. She indeed welcomed the advice, but in the end she wanted to do this her way and felt the ever-so-well-meaning comments were an intrusion.

The peer group offers support and encouragement as well as realistic backing. It should not encourage avoidance by being too soft in reducing the power of the pressure rather than adjusting to it. Peer-group support focuses on specific themes, such as ‘How you make the transition from being a patient’. The support can also be very practical. Chris, a counsellor in the occupational health centre of a hospital, ran a group for staff who had to suspend or end their work because of illness. They discussed matter-of-fact issues such as money and volunteering jobs that they could do while on sick leave. He remembered Maud, who had been working as a nurse until she was diagnosed with cancer. She was expected to live only a few more years.

(p.132)

I met Maud very early on after her diagnosis and she joined the group. In her fifties, she was motherly and dynamic. When the group talked about how unfairly they felt they had been treated by their employer, Maud was the one who would suggest doing something about it and the group tended to rely on her initiative.

Maud wanted to write a book to help children who were diagnosed with cancer. It was in part autobiographic. She used to bring chapters to the group members to read and give comments. Being involved in something creative was valuable. People in the group had each other’s telephone numbers, so that they could make contact if they wanted to and some did. They began to socialise and meet up for coffee, which was brilliant because some had been very isolated and depressed.

Maud’s book-writing was healing for her and for the group members who took part. The group empowered Maud’s self-realisation in supporting her writing as much as she gave them a focus, something to which they could contribute from their experience and skills. We will see later how hands-on involvement of different kinds can be a healing resource.

Working in a specialist palliative care day unit we have been struck by patients’ testimonies about how much they value coming in each week. Whilst their being away for the day offered relief for home carers, the day unit expanded the patient’s experience of the world, which was restricted by the illness. Coming to the centre was for some the highlight of their week. They met a number of people, did unusual things, enjoyed a good meal and made friends with other patients.

A lady told us that she used to be shy and reserved. In this group she was very much the cheerleader. She said ‘I had to become ill and come here to develop that side of me.’

Many day units offer a range of activities. Besides patients’ health and condition being monitored during those weekly visits, they can try out a craft and go home with candles, cards, photographs, and special gifts they have made. They can also enjoy complementary therapies and ‘look well, feel good’ make-up and ‘head-start’, where women who have lost their hair through chemotherapy are taught different ways of wearing scarves and hats. Some patients have never experienced any of this before and it gives them a sense of being special.

Hands-on involvement

A number of patients facing (terminal) illness discover and enjoy qualities that they did not suspect in themselves and in people around them. Many come to value lunch clubs and other social groups for the first time. They may even learn to use a computer or practice arts and crafts. There is a wide range of (p.133) possibilities provided by hospices and other volunteer organisations. With time and encouragement patients and carers may develop the courage to take up such opportunities to their great advantage.

Working with their hands can help people who have reached a stage of their life when other occupations are no longer possible. Such contributions can come in all sorts of ways: It might be quilting, needlework, photography, mosaic…Thus Mary, who did not know what to do with herself when she was in hospital, discovered a new craft, as Alice recalls:

Mary was a single lady who had given her life to her medical career and caring for her mum. We had the following conversation:

Mary:

  • The trouble is I get to about a quarter to ten in the morning and I think: ‘What am I going to do all day?
  • Mary was not used to that. She was used to being busy, busy.
  • Alice:

  • When you were busy at work and you thought about taking early retirement, apart from the travelling—which you can’t do today, in a few weeks that may be different—what did you think you would like to be doing?
  • Mary:

  • Well, I like using my hands.
  • She pointed out there were two books about basket making on her bed, which the specialist palliative care nurse had left because she does CBT (Cognitive Behavioural Therapy) with her.

    Alice:

  • Oh, does that interest you?
  • Mary:

  • Yes, I think it does.
  • Alice:

  • Well, we could get some for you now if you would like.
  • Mary:

  • Yes
  • Alice:

  • I think if you would like to do it, I will go and find one of the occupational therapists. We have some simple baskets, which you do with plastic. They have already the uprights.
  • I went down to the OT who, although she was almost going home, very kindly unlocked the cupboard and we brought a variety of baskets to Mary. The basket-making industry started there and then. She got absolutely hooked on it. She realised that she was doing something useful and productive.

    The next day she asked ‘What happens to these baskets?’ and was told the hospice sold them towards the unit’s costs. I bought the very first one she did because it was just a nice reminder. There was something there about being valued. Mary was producing something. How many people would see that as a spiritual need? But Mary’s self-esteem went up. She was depressed and she was coming out of it with the basket making.

    It was not until she took to basket making that Mary could fill the day. It was keeping her busy and prevented her getting lost in thought, sometimes very (p.134) negative. Maud and Mary found an identity in their creativity and productivity. They ended up with something tangible of which they could be proud and which people could encourage them in.

    Patients who have been busy can find it hard when suddenly they do not have the energy to do the things they used to. Their value seems to be withdrawn.

    Joanne, an elderly therapist, confided how she feared that a day would come when she could not look after herself any more. She feared that if and when she ended up in a care home she would have less opportunity to meet people with whom to share at her level of experience and understanding.

    When mental and physical decline do not match, there can be real suffering for the person. Alice tells of a similar need:

    Frederick had worked very hard running a business which had made a name. He said, ‘You know what I was used to, some nights I didn’t go to bed. If I had a deadline, I would be up half the night, or all night framing pictures. Now, all I do is sit around doing jigsaw puzzles.’

    That rang a bell. Yes it is fun to do a jigsaw puzzle, but not every day. Could he not be found something to do where he was producing something, where he could feel he was contributing?

    It can also happen that patients discover new things in themselves during treatment and after-care. Such was the case for Maureen, the anxious young woman who had found significant support in the relaxation group. Her therapist reports:

    A while later Maureen had a placement in her professional training. They needed somebody to teach some relaxation, and she wondered whether it would be okay for her to do this. She contacted me about it and asked to use some of my handouts. She herself was now teaching relaxation. She had been the recipient of something healing for her, had taken it on board, and was now teaching relaxation to others.

    When we spoke next, Maureen hardly mentioned the anxiety. She was getting on with life, having moved from thinking she couldn’t do something to being in a position where she was called upon to do it and did. It made her feel really good. Doing something she had never expected of herself, she had become instrumental in something happening. From being turned inward on her issues and her problems, feeling detached and isolated, she was opening out.

    Maureen had gone to the relaxation group looking for help with her anxieties. Working through her issues in this way had had a snowball effect. She could now pass the relaxation on by teaching it—as the wounded healer—but could also integrate the experience and use it in other areas of life in unexpected ways. (p.135)

    When their condition progresses and patients miss the physical strength to practise any form of hands-on involvement, finding something meaningful to fill the day can become more challenging, and they may suffer distressing introspection about what they have lost in their lives. Being read poetry or a novel can be uplifting and sustaining. As Siobhan suggested, some have the nerve, the courage, and creativity to work out what they can still do with some help. Such was the case of a French journalist who moved one of us greatly. He suffered a ‘locked-in syndrome’—literally, locked inside himself—after a stroke. He could no longer move, eat, talk, or even breathe without assistance. The only movement he had left was the blinking of his left eye. He managed to dictate a book (Bauby, 2007) for somebody to transcribe by blinking for every letter.

    Ways to express feelings and find new meaning

    As we have seen, the search for meaning covers spiritual characteristics of connectedness to self, others, the environment and The Other, as well as seeking the value/purpose in life and making sense of the ordeal one is facing. Arthur (see Chapter 3, ‘Inner turmoil’) and Ella (see Chapter 4, ‘The part of life one has not lived’) are two of many patients in whom healing presents a movement towards rediscovering a sense of personhood and identity, even if it was different to how they felt about themselves before the illness. Journaling, writing a dream story or a letter or describing life imprints can help in having those conversations with ourselves and through them finding a constructive, bearable, and nourishing meaning for the loss.

    The search for meaning may throw up many questions and maybe unearth hidden personal sources of strength. Thus Siobhan, a psychotherapist who has had personal experience of life-limiting illness, has found artwork helpful to herself and others in getting past their inhibitions and their fear of anger so as to access deeper levels of meaning. She told the story of her work with Lynn:

    Lynn was a woman in her late forties who suffered from lupus. It was very limiting for her. She was very frail, and walked with elbow crutches. There was a resignation about her: ‘There’s nothing I can do, I’ve got to live with it’. She couldn’t do writing or drawing because her hands were too bad or she didn’t have the energy, even when we set something up where she could be quite comfortable. But something did not quite match. She couldn’t write, and yet she used to do the accounts for her parents.

    One day we had newspaper on the floor, a thick brush and strong colour paints—red, blue, yellow, bright primary colours. She picked red and black, and started off with large movements, swearing whilst she was doing it. She was shocked and said, ‘I don’t like this. I don’t like this.’ Lynn was deeply (p.136) religious and she held this belief that God doesn’t like anger. We explored what was wrong with anger, reframing it as a God-given emotion: not the anger was the problem, but what we did with it.

    Lynn gradually began to see that there was a role-reversal in her family. Although she was so disabled, she acted as the parent and her parents were very childlike. The more she realised how her parents had suppressed her, the more her anger kept coming up.

    When Lynn’s father died, it was a release for her. She moved on and her mother moved on too. The lupus was still life-limiting, but it did not restrict her so much. She found another way of doing things. She went to a watercolour class in the village with her mother. It was sad that her father died, but Lynn realised that he’d held her and her mother back.

    Some patients tend to be unaware of the anger and grudge they hold deep within them. They focus firmly on moving on with or despite the illness. The key for Lynn was to accept herself without the steely, ‘Oh well I’ve got this, I’ve got to get on with it!’. Once she put her mark on the paper, she was shocked by what transpired. Questioning the colours and shapes, where she put things, the way she did it, she realised she held a great deal of anger. Allowing those feelings to come to the surface enabled her to acknowledge her fear, pain, and hurt. She could then come to a healthier acceptance of her life and her illness, which freed energy to develop new and different interests.

    Siobhan’s sensitivity to anger stems from her personal history of having to give up nursing when she hurt her back. She shared:

    It was extremely painful because nursing was my life. The first time I hurt my back I was in bed for nine weeks. That was eighteen years ago and then last year, I had to stop my counselling work too, because my back went completely. I couldn’t walk. I couldn’t drive, I couldn’t stand, I couldn’t go to the toilet, I couldn’t do anything and I had to wait ten months for surgery.

    The difference now is that I can accept myself as I am in a loving way, rather than with the seething anger. I haven’t given up fighting, because everything is a fight, but I look out for what I can do rather than what I can’t. I always used to battle with everything, and I find I’m still hanging on to the counselling centre. But I look back now and think it’s absolutely absurd to battle with that. All the energy and the time and emotions wasted! There’s room for other possibilities and they’re often better.

    Writing and deep relaxation have helped me deal with the physical pain. Visualisation was the best one for me, especially of moving water, but also breathing—in for five and out for seven beats—and meditation. My dealing with grief and sadness has been helped by giving it a voice and space. I wrote (p.137) poetry and I did artwork and imaging. If I came across something that I found really difficult, putting it down in painting helped me to understand what I was feeling.

    Art is a creative expression of sensations at the edge of people’s awareness. In painting or poetry we can express feelings even if we have no language for it. It is an outlet. A dialogue can start with wondering about the form of art; its rhythm, shape, and colours. Sometimes, just the thought about what one would express in artwork can open a bridge when a client is stuck.

    One of us suggested to a client that she might consider expressing her feelings in painting. When she came back the next week, she didn’t want to paint, but she had thought about what she could paint if she did and talking about it set the ball rolling.

    With or without artwork, reflecting on oneself, acknowledging changes and personal vulnerability is an important resource towards a fruitful living in the future, however long.

    Intimacy

    Not all patients and families need counselling. Intimate relationships can play an important role in patients’ ability to cope or feel ‘healed’. Fiona’s loyalty helped Noel along:

    Noel and Fiona enjoyed hill-walking and crosswords. When Noel had a massive stroke their life changed forever in a second and the two things that they did together, recreationally, were completely taken from them. Fiona went from being a wife to becoming a carer. She cared for him for eighteen years. What kept her going were some of her beliefs and the way that she could square what had happened.

    To start off with, Fiona and Noel had a lot of support from outside, but over time it disappeared and that contributed to life becoming much more difficult for them. Noel went through a stage where his speech and his walking improved, but then it all deteriorated quite markedly and they knew it would never pick up again. During that ‘good phase’, you could sense the frustration of this man—that he couldn’t get you always to understand what he was saying, that life was very difficult for him—but most of the time it was remarkable how he accepted his lot.

    Healing for Noel was having Fiona with him all the time and the sense of continuity to know that she would stand by him to the end, no matter what. He had absolute confidence in that and it was rightly placed. Fiona did come from a family where doing things for each other and looking out for each (p.138) other was part and parcel of what you did. It was part of what made her who she was.

    One of the things that Fiona and Noel used to do together was to go out in the car and drive in the country lanes and go to all the places that they had walked. That wasn’t painful. They were able to enjoy the countryside and Noel’s face lit up when he was driving along. It was a way of continuing to share a little bit of their life. It maintained a connection with what their relationship had been about.

    Fiona’s example underlines the burden carers may feel, especially when the duration of illness is prolonged and external support tends to fade away. This couple’s whole life was turned upside-down by Noel’s stroke. Perhaps Fiona felt lonely at times in what became her life’s duty, and perhaps Noel may have felt guilty and embarrassed to put such a strain on his spouse. Yet their mutual trust and loyalty was a haven and, in a creative way, they invented new patterns of sharing their life.

    Another patient, Stan, managed to grow in adversity, thanks to intimacy and the support he found in the natural environment and in small things. Suffering from increasingly severe diabetes, he had had to inject himself for decades and had reached a stage where he had no feeling in his legs or feet. He had to imagine what it was like to stand up and walk in order to be able to do so. With a great sense of self-respect, Stan was continuing to work, write, and paint, and it was almost as if with the physical deterioration his sense of personhood had strengthened. Benedict shared:

    Stan has been served by the balm of intimacy with a woman who relates to him intellectually, professionally, and loves him physically despite the fact that his body is wasting away. Being in the relationship without having to hide anything and being totally accepted—which is not for a single second in doubt—confirmed him in the very essence of his being.

    Another thing that strikes me about Stan is how he can use the natural environment to sustain himself. He can sit and watch a bird, a plant, and to him that is life-giving. Apparently he receives enormous nourishment and succour from the simplest things. It seems as if the illness has taught him to let go and to remain with the essence of being.

    Stan’s is a very powerful example of a life that looks like a progressive deterioration from the outside but has been the reverse on the inside. It is almost as if the illness left him with no option but to let go, and doing so has enabled him to embrace other aspects of his being and of the world. Benedict reflected:

    In the case of Stan the acceptance and letting go has enabled him to enter into the world of the invisible much more fully. He does not see the woman who (p.139) is so important to him very much, but the bond between them is enormously sustaining to him. He is much nourished also by music and literature. There is a strong—and he would use this word—spiritual dimension to his hold on life and its meaning. He is uncertain about the nature of the life hereafter or even its existence, but he said recently that because so many invisible things sustain him he finds it a perfectly tenable hypothesis that although invisible, there is a life beyond this life.

    Stan has managed the difficult transitions that came with his progressive physical deterioration with the support of an intimate relationship in which he could be totally open and free, the strength and succour he found in the natural environment, his creative painting and writing, music and poetry, and more generally in ‘invisible’ but not ‘unnoticeable’ resources. His experience is a case in point for non-religious spiritual resources.

    Acceptance

    We have seen in the discussion about pain and suffering that although not a necessary condition for acceptance, pain control contributes to it in a similar way to how acceptance and willingness contribute to alleviating the pain (see Chapter 14, ‘From being the subject of suffering to an observer of pain’). Louis, one of our informants, says:

    Feeling bad about feeling bad is a recipe for getting stuck. Feeling okay about feeling bad allows it to move forward into positive emotions. Instead of sadness can come joy; instead of anxiety, calm; instead of shame, a sense of self-worth and acceptance.

    For some the verdict ‘terminal’ seems to operate a shift from fear, anger, pain, and looking backwards to looking ahead and setting an agenda. And yet what they are looking forward to is their dying. Sometimes people have an astonishing breakthrough that leaves them in an ecstatic state for two or three days. Others find wholeness in depletion, admitting that they are who they are and not who they think they are, for in reality none of us is perfect or complete. Sue, a radiographer and counsellor, commented about a couple whose equanimity inspired her:

    Keith and May had a strong religious background, but also a huge amount of caring for each other and an acceptance that death was part of life and that actually they were both very sad, but this was okay. There was no angst, and she came and thanked us all. Their journey was just nice, but it was also pain-free.

    Benedict recognised in Arthur a journeying ‘from resignation to a more positive acceptance’. Once he knew that he was dying Arthur no longer showed (p.140) signs of depletion or capitulation: a new resolve had come over him. As Balfour Mount put it:

    Once we accept our givens, we are free to assume an attitude to them; to exercise our options; and to take responsibility for ourselves (Mount, 2003 p. 42).

    Acceptance comes through ‘choosing not to’ as well as ‘choosing to’ in recognising and working with the inevitable. Acceptance of a situation, however bad or challenging, is the key to a response to it. It gives opportunity for clear thought, personal assessment, and valid options bravely taken up. As Carl Jung put it, ‘Acceptance is the conscious attitude which accompanies integration’. It is the growing wholeness, coherence, and personal integrity that come from an integration and awareness that enable us to choose. It is not a constant state, but rather a moving between accepting what will happen and the anguish of facing death. Rachel, an oncology counsellor, shared this insight:

    For many clients, there is a moment in the session where they want to be with the sort of dark, worst-case scenario part of themselves; when they want to think ‘How will I manage with losing my independence? Losing my ability to care? How am I going to face leaving my family if I die?’. Then they want to click out of that and be with the resourceful side. There seems to be a mix and match between the two worlds.

    The intensity of the experience demands relief and alternation of moods. Louis Heyse-Moore (2009, p. 118) recognises multiple layers in acceptance as he points out that each stage of the story of a major illness will bring its own threats and needs of acceptance. There will be an oscillation of feelings from anger to relief, from sadness to hope, and back again. The series of threats can arise so fast that little time is available to adapt to and accept the new position. As the threats develop, they can bring back unhealed memories of the past and raise further anxieties that may not be immediately relevant to the present situation. Acceptance sounds easy—but it can be a major challenge itself.

    Acceptance can and sometimes also needs to be a mutual experience. We have seen with Stan that being fully accepted by someone just as you are, ‘warts and all’, is very ‘healing’. Lester, on the other hand, missed a matching willingness in his partner to accept his dying (see Chapter 9, ‘Flexibility in approach and response’). A willingness to wait, to accept where we are at, to savour what we have, and to let go does not come easily. Michael Mayne writes:

    This is the real test: that of patience, humour, trust, and hope. They can only flourish in a climate of acceptance, a recognition of the value to be found in the willingness to wait, wholly dependent on the matching willingness of those who love you to serve you in Blake’s ‘minute particulars’ of love (Mayne, 2006 p. 79).

    (p.141) This may be why, when patients discover acceptance, all the people around them can be transformed by the experience. This happened for Elizabeth (see Chapter 14, ‘From being the subject of suffering to an observer of pain’) as Martin Laird writes:

    What brought definitive change for the remaining time before her death was the realization that in this very silence there was communion with all people, a loving solidarity with all humanity. The awareness of this was seamlessly united with her awareness of God. This realization expressed itself—even while bedridden—as self-forgetful, loving attentiveness to all whom she met. Health-care professionals, family, and friends arrived to help her and left feeling helped by her…She didn’t mean to give, and they didn’t intend to receive. But the more she was able to surrender to the loving silence at the centre of her pain, the more she was a vehicle of this loving silence. (Laird, 2006 pp. 108–109)

    Practising meditation, Elizabeth noticed an additional ‘spiritual’ fruit; a sense of connectedness which seemed to include all at her bedside and beyond. Such has been the case for Sophie (see Chapter 7, ‘Interdependence and mutual impact’), the young cancer patient who lifted everyone up and indeed for Sara (see Chapter 12, ‘Death and dying’) who was an inspiration to so many others, even when she became skeletal and blind. For all of them, there was a mutuality between cared-for and carer. The presence of courage, trust, and hope, which are not necessarily related to any particular faith tradition, seems to enhance—or be derived from?—acceptance. As one of our informants said, all resources spill into acceptance!

    Acknowledgements

    Text extracts from Laird, M., Into the silent land. The practice of contemplation, Darton, Longman and Todd, London, UK, Copyright © 2006 Wales Literary Agency, Inc. and Laird, M., Into the Silent Land: A Guide to the Christian Practice of Contemplation, Oxford University Press, Inc. New York, USA, Copyright © 2006, by permission of Wales Literary Agency, Inc., Darton, Longman and Todd, and Oxford University Press, USA. Text extracts from Mayne, M., The Enduring Melody, Darton, Longman and Todd, London, UK, Copyright © 2006, reproduced with permission from Darton, Longman and Todd publishers.

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