CONTENTS

 

Editorial
  Helen Ker —Read here

Hypochondria
  Elizabeth Morton —Read here

Taking your son to the detox clinic
  Frankie McMillan —Read here

Treatments
  Elizabeth Morton —Read here

The professor of anatomy introduces Mac
Francis it’s time we talked about the double helix
  Kerrin P. Sharpe —Read here

Gristle
  Elizabeth Morton —Read here

Vital signs
A neurosurgeon collaborates with his dreams
  Kerrin P. Sharpe —Read here

A literary exploration of the grief associated with medical illness
  Hannah Coombridge —Read here

Tangihanga
Nervosa
  Sarah Maindonald —Read here

Her brain
  Hannah Coombridge —Read here

Not standing upright there
  Paul Stanley Ward

The body talks
  William Sherborne —Read here

Inheritance
  Johanna Emeney —Read here

Friend bequest (from a modern cad)
  Emily Adam —Read here

Taking transgender healthcare seriously
  Alex Ker —Read here

Wheel of Fortune
  Greg Judkins —Read here

Simple first aid
  Hannah Coombridge —Read here

RSI
  Amber Read —Read here

Giving sorrow words: the cathartic power of writing
  Sandra Arnold

Medical miracles
  Johanna Emeney —Read here

Dissection
  Angela Andrews —Read here

So what was chemo like?
  Heather Cameron —Read here

Public health campaign
  Erik Kennedy —Read here

Sanatorium
  Wes Lee —Read here

ONLINE ONLY

The avlusion of her heart
  Celia Coyne —Read here

A LITERARY EXPLORATION OF THE GRIEF ASSOCIATED WITH MEDICAL ILLNESS
Hannah Coombridge

Kubler-Ross developed the model of ‘Stages of the Grief Cycle’ illustrated in the diagram above—originally based on dealing with terminal illness. Although not strictly sequential, the five stages were thought of as a journey from normal functioning through denial, anger, bargaining, depression, and acceptance to a return to meaningful life. Bargaining and depression have since been re- ordered but the stages themselves remain unchanged along with the prevailing message that a certain stage may be continually revisited, or skipped entirely.This model must now be one of the most quoted concepts of grief, but it is seldom unpacked to realise its true implications for the suffering individual.

In the sphere of health and well-being, grief surrounds us. It hits when there is a loss of normal functioning and stays until either functioning returns, or a new reality is realised and meaning is restored regardless. Grief is defined as a ‘deep or intense sorrow or distress’. It is not synonymous with ‘depression’. Confusion between the two may account for some of the severe under-acknowledgement given to the complex grief or ‘ache’ that is either directly or indirectly related to a patient’s ill-health.

Unfortunately, as the initial stages of the grief cycle are more difficult to define, they receive less attention and acknowledgement. Many cancer patients are struggling with fear, confusion, anxiety and frustration about how their terminal diagnosis may affect various other aspects of their life.These stages, along with the process of ‘dialogue and bargaining’, are seldom explored. One of the few examples is a study called ’Prayer and bargaining in adjustment to disability ’ which raises awareness of patients’ desires and concerns and concludes that a patient’s exploration of spirituality, beliefs and ideals is a powerful approach to optimise both coping skills and health outcomes. The exploration of these ideas leads to the concept of narrative medicine.            

Narrative medicine has evolved as a means of empowering patients to regain authorship of their lives. Through an increased awareness and understanding of grief, patients may be able to recognize that their complex and often confusing thoughts are normal emotions and reactions to their situation. Rather than being overwhelmed or ashamed about their struggle with a state of ‘dis-ease’ they are invited to process their emotions in an attempt to provide cathartic relief, thereby regaining mastery of their life as their suffering ceases to be all-consuming. Depending on the patient, their doctor may or may not play an integral role in this process through co-authorship, but it is important that they are aware of their patient’s grief regardless. Health professionals must consider the unique nature of disease where grief goes beyond physical loss; it includes loss of function, loss of awareness, a loss of ability to create meaningful, untainted memories, as well as dealing with the inevitable loss that is still to come.These are all things which cannot be measured by quantitative studies but which are exemplified in the words of patients who inscribe their experiences of grief on paper.

Reading patient poetry can help people (health practitioners in particular) to unmask all stages of the grief cycle in a strikingly poignant way. Of course, in reality, every patient’s experience is unique and cannot be neatly categorized into sequential stages. A few examples explored below allow us to unpack this concept of narrative medicine and the therapeutic benefit it may hold.

Lucille Clifton explores the initial stage in her poem Cancer. She begins with; ‘the first time the dreaded word/ bangs against your eyes so that/ you think you must have heard it’.This image of her diagnosis banging against her eyes and disorienting her instead of being received properly by her ears reveals the initial shock and lack of comprehension that many patients experience. While medical professionals are surrounded by sickness and tragic circumstances, most patients are not accustomed to being in a hospital and hearing catastrophic test results or new diagnoses that may change their life drastically. A sudden diagnosis can blindside people, leaving them stunned and wondering if they actually heard the doctor correctly. The following stanzas go on to explore this initial grief, talking about the second time being a ‘swoosh as if/ your heart has fallen down a well’ and ‘the third time you are so tired/ so tired and you nod your head’.This progression from shock, to fear and desperation, to depression, portrays the initial stages of grief, stressing that they are all intricately woven into a dynamic and ongoing process. Thus, doctors must have heightened awareness when delivering and discussing new diagnoses. Whether we identify a stage of grief in a patient or not, we should be considering what else they may be feeling that they are not showing and maintain an open, holistic approach.

The anger stage of grief is an incredibly confusing time for patients where they may often feel misunderstood and consequently distance themselves from others.This is an area that health professionals may be able to anticipate and subsequently provide appropriate psychological patient support while alerting the family to potential behavioural changes. Mandy Dowd’s poem Out in the sun the busy lives swirl reveals how she felt separated from normal ‘busy’ people during a period in which she was suffering from embarrassing unexplained symptoms including unpredictable seizures. She is embarrassed by her ‘loss of control’ and how this is perceived by those around her. Anger and sarcasm is laced through her writing, as part of her is shamed into feeling guilty for ‘forcing her broken existence’ upon others. She longs for an ‘old friend who sees through the frightening symptoms’ and recognizes that ‘the soul is the same is the same’.

No one wants to be a burden, to stand out, to be judged or scorned or misunderstood. Sometimes when people are the most unreasonable, they are acting out of a deep frustration with their state of being. It is commonly recognised (though not likely researched) that we all tend to lash out at the ones who love us most. It is not surprising that people suffering from medical illness often push people away in their embarrassment and shame as they struggle to cope with their anxiety, fear, and adjustment to a life that has changed dramatically. While fear and confusion tend to characterise the initial shock stage, anger at the implications of disease leads someone to develop a negative perspective and risk spiralling downwards into the depression stage of grief.

Depression is a stage that now receives a lot of clinical attention due to the ability to diagnose it and treat patients with anti-depressants. An individual may suffer from depression for a wide variety of reasons, which may or may not be triggered by another medical illness. Doctor-poet Glen Colquhoun would argue that ‘ache’ or ‘the human condition/plight’ is at the core of all depression.Though depression is by no means exclusive to the grief cycle, it is the stage in which many patients get trapped. Jane Kenyon’s Now Where provides valuable insight into what it is like to be mentally trapped in this arbitrary way. She talks of depression as a ‘lurking other’ describing it taunting her as it seeps into everything she does. It is inescapable; ‘it wakes when I wake, walks/ when I walk’; and as a result she is exhausted. The ambivalence that accompanies depression is exemplified in a simple phrase; ‘If I lie down/ or sit up it’s all the same’. Perhaps this feeling of being overwhelmed and helpless is why so many people get stuck in this stage of grief. At this point, having been driven to despair, patients can become increasingly angry with their situation and the lack of comprehension displayed by those around them. This is a dangerous time in which Kubler-Ross’ model has the potential to become cyclical as the intense helplessness strips people of hope.                

Depression is exhausting. It is mentally and physically draining for those experiencing it, but also for their support network. Patience and compassion are required of anyone who wants to be helpful to someone in this state of mind.This compassion must be authentic. As health professionals we must actually prove to our patients that we recognise their ache and we care. Medical professionals are in the fortunate position of being able to empathise with patients, whilst at the end of the day walking away from the troubles they may be facing. (Which we MUST be able to do for our own health and well- being).This makes us the perfect people to actively try to help our patients navigate the grief that they may be sinking in. In an attempt to explain what it is really like to live with chronic illness O’Connor’s poem Midnight cancer speaks of a ‘bottomless pit’. There is no respite and she is left questioning ‘oh/ God/ why/ me?’. This questioning is a sign of desperation as well as a cry for reason to explain what she is going through. It is often this cry that patients start to grapple with when searching for a way to move out of the depression stage.

Moving into the bargaining stage is the key to progressing positively through one’s grief and finding new meaning in life even in the face of disease. This is what we must train ourselves to recognise as health professionals. This process of reaching out to others with a desire to tell one’s story is at the core of narrative medicine. It is an active phase in which the patient must begin to take ownership of their life including their disease and the way it disrupts daily routine. This may have more to do with developing a new perspective and new expectations that will enable a patient to live abundantly within their capabilities. It is the attitude of a patient deciding to fight for whatever quality of life they still have. This is evident in stroke patients who may have suffered from initial paralysis celebrating achievements in proportion to their personal significance – ‘clinging/ to the bed bars. Upright./Triumphant’, and later revelling in their surroundings having wheeled themselves to the open door. In Five months after my stroke Margaret Robison’s attention to the natural world focuses on life, renewal, growth, and vitality. She observes the world around her as it is in that singular moment, marvelling at what is before her despite its temporality, and her own.There is recognition of seasons and changes, of ripe fruit that will soon fall from the life-giving tree, and through this, an acceptance of mortality although the patient is not completely comfortable with it.Through a time of bargaining and actively trying to regain mastery, the patient has wrestled with her loss and doggedly recovered enough to return home, grateful for her newfound hope and joy in this modified happiness. This ‘return to meaningful life’ is the ultimate goal in the grief cycle, and each individual must find it on their own, hence the potential impact that narrative medicine has to empower patients through authorship.

The grief cycle model is of course, imperfect. Our individuality means that one size does not fit all. Not everyone experiences all stages of grief, nor do they necessarily work through the stages in any given order. Regardless, it is generally agreed upon that once a patient has developed an acceptance of their illness and its implications and returned to ‘normal functioning’ they have effectively worked through their grief. For some patients, this seems entirely unattainable and many do not ever work through their grief associated with medical illness. Alternatively, after working through the immediate consequences of an illness, many are no longer defined by their disease; illness does not dictate how they live their lives, adaptations have been made where necessary, and mastery regained.This is a time worth celebrating.Yet for some, a certain degree of uncertainty may always remain as to whether they have come to this point of acceptance, or whether they are currently sitting in a patch of denial having come full circle.

The grief cycle—though a useful tool in helping us to consider the complex nature of grief, may not hold all the answers. Grief is more than just feeling sad; it is a complex journey from a loss of functioning, back to ‘wellness’. The stages of grief as we know them rarely occur in isolation but are more commonly found woven together into an entirely individual experience. Grief is not objective, there are no sets of data telling you when shock is over and anger should commence. Grief is completely different for everyone. It is difficult to comprehend for the individual immersed in it, and even more difficult to express to those outside of it. Poetry and narrative can help a patient convey their story. Even with these tools we struggle to connect ourselves to the people around us. Having explored grief extensively, doctor-poet Glen Colquhoun implores us to recognize the ache in the people around us and to learn to simply sit with someone in that space, not needing to ‘fix’ their suffering.This awareness and approach to understanding grief is vital.

Grief is a messy process, but it is one which many patients must journey through. An increased awareness about the multifaceted and unpredictable nature of grief may help patients as they try to come to terms with the implications of serious disease for their lives, not only immediately, but for their loved ones and their futures. It is important that patients feel supported on the winding road towards re-establishing their sense of meaning and their ability to function normally. This is especially important considering that appropriately dealing with grief may improve health outcomes. Narrative medicine, with its focus on empowering patients and working alongside them to co-author their lives during what are often long and hard journeys, suggests that health professionals have a role to play in this process. Even if that role is learning to simply sit with a patient in their ache and patiently support them through whichever stage they may be in.

                    

References:

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