The Body/Healing/Mortality Tag

31 Oct On Being a Care-Giver

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The Role of Care-Giver

I am a care-giver, a part-time carer for a friend. Being a carer is not my livelihood. But care-giving has been one of my roles in life for as long as I can remember, including as a co-parent.

I learned early on to take care of others in order to get my own needs met. It began in small and subtle ways – taking care of a parent. It became more complicated, more involved, until ill health demanded that I examine my care roles closely and make changes.

Codependency in Care-Giving

It’s tempting to develop a ‘Saviour Complex’, but I am not a Super Hero. Being kind was a good way to feel good about myself. Doing things for another felt easier than trying to work out what I needed. Being a good girl topped up my self-esteem, allowed me to ignore my own needs, and kept me entangled in a co-dependent relationship with someone who, in an ideal world should have been my care-giver.

In order to return to health, I took a good long look at my tendency to care too much. I re-prioritized my life so that I came first. I re-assessed what I was able to give, and learned to give from my surplus energy. And I recognised that there were people in my life who genuinely needed care – from me and others.

In restoring the balance to include my needs, and share the care load with others, I found a way to offer care in a more balanced way. Read about my ‘Recovery from Chronic Fatigue Syndrome’ to learn more about how I came into right-relationship with caring.

Finding Balance in Care-Giving

There have been a number of family members and friends that I have provided some care-giving to over an extended period. I try to commit to offering regular visits to one person, (despite there being several in my close orbit who would choose more contact).

On the day that I visit someone, I try to ensure that I have met my needs first. On a visiting day, I will ensure that I have slept enough, eaten well, enjoyed some time in nature, and taken care of any very urgent tasks.

I include a walk as part of my journey to the care home, often using my journey time to call friends and read on the train. I try to include something restorative for me, in my visit. I may have a nap, eat something delicious or find a way to include creativity. This way, my care visits feel nourishing to both the person I care for, and me. In addition, there are often mutual expressions of love and gratitude.

Care-Giving After a Stroke

Eight years ago, Alex – a close friend – had a massive stroke. Brain surgery followed. For the first six months he could not sit up or eat. His speech was very limited, and he lost about twenty years of memory. He has limited movement and feeling on one side of his body.

Six months later, Alex made an unexpected sudden recovery of his speech, re-learned how to sit up, eat and drink. Now he spends his day in a wheelchair, and is able to chat for short periods. His brain injury severely limits his capacity and his motivation to do anything.

In the wake of the stroke, I wanted to support him to recover. The thing about strokes is that they vary in cause, site of injury, and severity. There is no clear guarantee of how much or whether someone will be able to recover, or how long recovery will take. The stroke Alex suffered was severe. We didn’t know if he would survive, and if he did, we didn’t know what the impact would be.

Ambiguous Loss

Brain injury, like dementia can be one kind of ‘Ambiguous Loss’. Pauline Boss coined the term to describe mourning a loss or absence that has not yet completed, or is unresolved.

I have lost much of the friend Alex was before the stroke. He is able to remember some of our shared past. Our history together goes back forty years. But for his pre-stroke partner, there is the additional sorrow that he has forgotten their well-established relationship. Alex’s body is still present, but in a different physical state. His mind is also much changed, although his personality remains in-tact.

Alex grieves the absence of who he was. He mourns the loss of his former identities, as he doesn’t remember the things that used to make up his life – his home, his job, his hobbies, his passions, his relationship, his friendships. He grieves the loss of what he used to do, the pleasures and pastimes that gave his life meaning and purpose. He has also lost his perceived potential, his future hopes and dreams. He carries many regrets of what he didn’t do while he was able to.

Learning to Care Without Expectation

For the last eight years, I have visited Alex most weeks. He lives in a care home, and is supported by the staff there, and a small core team of friends. Learning how to offer my care in a way that works for him continues to be a deep learning journey.

We sit together, in his room, with his grief, about all that has happened to him. And I sit with my grief about him and all that I cannot change for him. We sit with our mortality, and our helplessness.

After the first three years, I stopped hoping for change, for some improvement in Alex’s cognitive and physical health. Since then, we have developed a mutual intimacy that is not burdened with my expectations. This is a very personal, slow tending to grief. It requires letting go of trying to change anything.

Being With as Grief Tending

I sit, with as much attunement as I can. I sit with presence, available for conversation or tasks. When I sit with Alex, my company helps him to regulate. My ‘being’ is much more helpful than my ‘doing’ anything.

“When you are here, I feel secure,” he says, closing his eyes for a nap.

This sitting alongside someone in difficulty requires patience and simple kindness. There is often no action necessary, no quick fixes, no guided process. Being with someone who has brain injury requires me to follow their requests and slow pace, without expectation of any particular outcome.

Understanding the Symptoms of a Stroke

Jill Bolte Taylor’s Ted Talk ‘My Stroke of Insight’ gives a fascinating description of her perspective as a neuroanatomist undergoing a stroke. In her book of the same name, she offers a great list of tips on how to be with someone who has had a stroke.

Make sure that you are familiar with FAST – the acronym for the quick check to recognise if someone has the symptoms of a stroke. FAST stands for FACE, ARMS, SPEECH, TIME. Time is critical for someone who may be having a stroke.

Support for Care-Givers

Care-giving can be hugely rewarding. It can also be relentless, boring, distressing and difficult. People may undervalue or not recognise the time, skill and energy that care-giving requires. It is also a role where those who do it may need support, and a place to bring their grief. There may be many losses along the way towards someone’s eventual end-of-life, and they are worthy of grieving. Care-givers are welcome at Grief Tending events.

Sarah Pletts is a Grief Tender and Artist who offers workshops in London and online, sharing rituals where grief on all themes is welcome. For more information about Grief Tending events see here.

04 Oct Recovery from Chronic Fatigue Syndrome

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I recovered from Chronic Fatigue Syndrome

In Chronic Fatigue Syndrome there are broad similarities in its expression in different people, and there are unique circumstances that mean each healing journey of recovery will be unique. I recovered after eight years struggling with CFS/ME. It was a profound and transformative part of my life, although it didn’t feel like it at the time. I am writing about my recovery in the hope that it may inspire others to find their way out of the maze. This article is based on my own experience and understanding. Theories of recovery are constantly changing and new protocols being developed.

A Network of Resources

As a Grief Tender, I bring my understanding of working with all forms of loss. The first step with Chronic Fatigue Syndrome, as in Grief Tending work, is to find a network of resources, to anchor in things that inspire and support us. This may be values, faith, the more than human world, something greater than me, people I trust, a place that makes me feel good.

As a Grief Tender, I bring my understanding of working with all forms of loss. The first step with Chronic Fatigue Syndrome, as in Grief Tending work is to find a network of resources, to anchor in things that inspire and support us. This may be values, faith, the more than human world, something greater than me, people I trust, a place that makes me feel good.

What supports you?

People/animals
Practices/activities
Places/nature
Something greater than me
Self-compassion

“Move away from the bad stuff, move towards the good stuff.” RD

Worlds of pain and joy

A wise young friend of mine has found her own way to improve her mental health using this principle. I like the way she encapsulates worlds of pain and joy in this concise phrase. “Move away from the bad stuff, move towards the good stuff.”

The problem I had in putting this into action, was my inability to distinguish what was doing me harm, and what was beneficial to me. Some of the things I was doing, that I thought were doing me good – like sleeping during the day, wern’t always helpful. When I experimented with changing my activity instead of sleeping, it helped me to recognise whether I needed sleep, or whether I was using sleep to numb out.

Recovery from Chronic Fatigue Syndrome is a jigsaw puzzle and each person will need to explore which things in their lives are the bad stuff, and pursue a subtle path to uncover the good things too. There isn’t a universal set of instructions to figure it out. Learning to use mindfulness can be helpful in learning to notice and monitor our internal and external responses to external situations.

‘Life’s Energy Equation’

I find Dr Sarah Myhill’s basic protocol a very helpful frame to understand how to shift to a more balanced energy account. ‘Life’s Energy Equation’ as she describes it includes a leaky bucket on one side and fuel on the other. The leak in the bucket needs to be repaired, before adding fuel. In simple terms, the leak in the bucket is often the underlying emotional healing that is needed, and the creation of firm boundaries, so that our energy is not syphoned off to others. Until addressing the hole or holes in our system that lets energy flow out, anything else we do will be symptom management, rather than adding beneficial fuel.

Using the lens of balance can give a helpful overview to untangle the places where we may be losing energy, and the areas which need more good quality input or fuel.

Loss of Energy

What are the activities and people which deplete my energy?
What do I carry for others that is not mine, including from ancestral lines?
What do I take on that I don’t need to?
What do I need to let go of?
How do I drive myself?
What drives me?

Energy Credits

What nourishes me – activities, practices, people, places, sleep and food?
How do I find support?
What brings me fun, pleasure, joy?
What sustains and grows me?
What is missing that I need to find?

Healing the past

For me, repairing my energy bucket meant addressing some of the causes of emotional distress from childhood. I was lucky enough to discover an early Mickel Therapy protocol, and worked with a Mickel therapist and using elements of Reverse Therapy to address some of the traumatic events in my history. We worked somatically as I unravelled some of the developmental trauma and neglect from my childhood that I had explored previously in talk therapy, but not experientially through the body. Transforming Touch is a touch based practice (either in person or online) that I have also received which helps to regulate the nervous system and promote healing.

Repairing the body/mind split

Working with a somatic therapist also helped me to notice and prioritise the messages, requests and emergency signals that my body had been frantically trying to communicate to my cognitive awareness. These simple but essential signals had previously been ignored by my busy and capable mind. Pausing and developing mindfulness are simple ways to begin noticing what’s going on inside ourselves.

I discovered that I had been making logical but erroneous decisions about my wellbeing. I began to go to the toilet as soon as I registered the signal for a full bladder. I re-trained my mind to spot and respond to my body’s needs. I learned to notice how I was feeling physically and emotionally. I began to come down to earth.

Bridging the body/mind gap gradually builds trust so that the body’s emergency alert system calms. This creates a positive feedback loop. This and other ways to calm the nervous system are necessary to develop a more balanced, flexible ground state of being. This can be particularly hard when external pressures demand our attention, time, and energy, or add stresses without our consent.

Self-Care is a radical tool

I used to be too kind. I had a tendency to be co-dependent. I had responsibilities to a child, a partner, and a disabled parent. For the first time in my life I learned that my self-care was essential if I was going to be able to offer any support to the people around me. Boundaries were a new concept for me. I began to discover what I needed, what I enjoyed, what the post CFS/ME version of me might want to be. I learned how to make boundaries even with the people around me who had genuine needs. It may sound easy, or glib, but this took the most epic transformation. I needed to learn that I could only support others from a place of surplus.

‘What feels good to my body?’ This is a great question, and a whole field of enquiry. Physical touch is often one way to experience pleasure in our bodies. A good bodyworker is one way to find the tender care we may long for if we have the resources. It can also help us to map and connect our inner experience in the body. Massage is a tool that can also help us to access feeling, soothe, and find support. Self-massage or swapping a shoulder rub with a friend is one way to access positive touch.

With a ‘Healthy Human Culture’ lens

With her excellent ‘Healthy Human Culture’ frame, Sophy Banks’ zooms out the view of burnout. She has helped me to understand how a system (whether it is a body, an organisation, or a culture) becomes organised by trauma, and how to create return paths back to a regulated, regenerative, sustainable pattern. It can be particularly hard to discover sustaining patterns of health, and dealing with our pain in a culture that doesn’t value the wellbeing of all.

“I see that “burnout” is a worldwide condition of modern culture – globalised industrialisation and consumerism are rooted in extraction, disposability and accelerating speed, called growth. The same patterns of extracting from a system more quickly than it can replenish can also apply to groups or individuals – and sometimes we’re doing it to ourselves.” Sophy Banks

Finding ways to express emotions

Post Chronic Fatigue Syndrome, I have become a Grief Tender, and have developed tools to access, process and express emotions. My understanding of grief includes a wide range of feelings including anger, fear, numbness, despair and relief as well as sadness. These (and many others) are natural responses to many different kinds of life events and situations, including loss, absence, longing, change and bereavement. Emotional flexibility is key to mind/body health.

Learning to access anger

I was socialised female, in a family that didn’t express much anger. I didn’t have role models or tools to find healthy expressions of injustice and frustration. Learning to be angry was part of my recovery. Taking the lid of emotions, and anger in particular, can open up energy that has been tied up in staying small, nice and safe. Grief Tending is a way to surface and express feelings in a context where people are held by the container of a supportive group.

There are many different routes and pathways for working with trauma in relation to patterns of ill health. It’s important to find ways that work for you to:

Find support
Recognise and process past hurt, loss, absences and longings
Learn how to notice, recognise, experience and express current feelings
Find new ways to discover what you love and enjoy

Good Fuel

Good nutrition is part of moving towards the ‘good stuff’. It might be a really important part of your plan for recovery. I am also wary of the many ways people with Chronic Fatigue Syndrome can be willing to try anything to recover. This often includes a lot of expensive supplements or healing modalities. Keep following your gut instincts. This might be exactly what you need, but remember fuel will only feed you once you have started work on repairing the holes in your bucket.

One of the foundation practices of my own recovery was to go for a walk in the park. It is free. I enjoy it. It connects me with nature. Decades on, it is still one of the most important things in my life. It is a life-affirming, health-giving part of my essential self-care practice.

Recovery is scary

As my health started to improve, I was able to do more, but there was a persistent anxiety. I didn’t want to return to the darkness of chronic illness. A return to health is also often a bumpy journey with ups, downs and plateaux. As my immune system re-balanced I had a series of dental abscesses. I am still sensitive around chemical perfumes. Learning to trust and love my body was a process. I continue to take very good care of myself, and I’m probably fitter now than I’ve ever been.

“We, all of us, are learning to be here now, experience sensation, notice, and come to understand that we are worthy, that there is nothing to do, and that our bodies are glorious.” Max Mora

What I love and what sustains me

I found Betty Martin’s ‘Wheel of Consent’ another brilliant tool to help me get clear about boundaries with other people, and figure out what I wanted, and what I was tolerating. It is a practice that’s easy to learn, and starts as a touch practice, but can be applied to any aspect of life where we might give, take, receive or allow.

Along with walking, I discovered what I love and what sustains me – dancing, Pilates, feeding birds, meditating, sewing and drawing. I changed my lifestyle and found ways to express my sexuality. I started learning about grief, and changed my working life. In fact, having been through Chronic Fatigue Syndrome was an essential part of the learning that inspired me to become a Grief Tender and support others who are struggling with life’s challenges. By digging deep into my own journey into the underworld, I found gold.

See previous post: ‘Chronic Fatigue Syndrome and Grief’

Support Links:

If you are experiencing the symptoms of CFS/ME, consult your doctor to register the onset of symptoms and check for any other possible causes.

Dr Sarah Myhill’s ‘Life Energy Equation’ Protocol

Sophy Banks ‘Burnout or Balance’

Healthy Human Culture

CODA Codependents Anonymous

Mindfulness

Mickel Therapy

Reverse Therapy

Transforming Touch

Introduction to Betty Martin’s ‘Wheel of Consent’

Action for ME

ME Association

Integrated Somatics

Max Mora and Sarah Pletts on ‘Working with Grief in the Body’

Self-Compassion

04 Oct Chronic Fatigue Syndrome and Grief

Posted at 14:47h in Articles by admin 0 Comments

Looking back at Chronic Fatigue Syndrome

It is hard to describe the experience of having CFS after having recovered. Partly because having it was monotonous, relentless and difficult. Like many challenging experiences, our brains store these memories in a different way to the happy stories. For me, as with many others CFS brings poor memory and brain function as part of the symptom picture too. I chatted with JA, who has also recovered about how it was for them, and include some of their quotes in this article.

“Every bone and joint in my body hurt, and I didn’t have the energy to get up and go to the loo.” JA

What I expected but did not receive

I lost my thirties to CFS, at the time I expected to be building a career, and having children. This is an example of Francis Weller’s second Gate of Grief – ‘what I expected but did not receive’. Instead, I was lying motionless on a sofa, sometimes listening to classic audio books from the library, and staring at the blanket over my legs. I didn’t have the concentration to read. Music felt overpowering as if I had no skin. Chatting to others was exhausting.

Living in slow motion

My enduring memory of the experience was of watching the colours in the blanket. The light and shade in the room moved around like a sun dial, illuminating different colours and textures in the room. It was as though I was living in slow motion, my view of the world shrunk to the things I could see from the sofa.

“When I had CFS/ME, everything I thought was important got stripped away, so you get to find out what’s absolutely necessary.” JA

The symptoms of Chronic Fatigue Syndrome

Fatigue is usually the predominant symptom of Chronic Fatigue Syndrome. It is not the kind of tiredness that comes at the end of a busy day, or after exertion. It is a deep, incapacitating, immobilising sensation where limbs feel as heavy as lead, and any activity is a huge effort. If you have experienced CFS, you will probably also have experienced well-meaning friends saying, “I feel really tired too.” It really isn’t every day ordinary tiredness.

These are the main symptoms that may be present in this debilitating chronic condition, although others may be part of the picture too. A range of symptoms must persist for over six months, and exclude other illnesses to secure a diagnosis of Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (CFS/ME).

Extreme tiredness, especially after physical or mental activity
Brain fog, and memory problems
Dizziness, sore throat, headaches
Muscle weakness (and for some muscle and joint pain or fibromyalgia)
Disrupted sleep patterns, and waking tired after sleeping

My experience of Chronic Fatigue Syndrome

I felt ancient. I noticed octogenarians who were moving at my new pace; invisible and over-taken on the pavement by the able-bodied young. Any energy I had was used up doing essential tasks and trying to manage my limited energy.

“I tried everything, which drained my resources financially and energetically.” JA

I was lucky. I had a supportive partner. We had enough resources to survive. I could put my attention on trying to understand Chronic Fatigue Syndrome and work out how to improve my health. In those days there wasn’t much support available. CFS was also stigmatised by many who saw sufferers as malingerers or wrote it off as depression. My experience was relatively mild for most of the years I was affected. I had several periods where I was sofa-ridden for a few months at a time, and gradually recovered with brief relapses. Some people are very severely affected and need personal care.

An alchemical transformation

I am not a fan of ungrounded positive thinking, and blaming people for their choices, for creating their Chronic Fatigue Syndrome. It was, however, a learning process for me. Looking back at my eight years of debilitating symptoms, I see it as an alchemical process. I was tempered in the crucible of Chronic Fatigue, which transformed me into the person I have become. It’s hard to quantify the changes in me; I felt like I had been on a meditation retreat for eight years. It wasn’t easy. It involved a rigorous examination of every aspect of my life, changes in how I thought, felt, behaved and related.

“I felt like a reverse sleeping beauty and woke up 9 years later, 9 years older.” JA

Chronic Fatigue Syndrome and grief

From my subjective vantage point I want to share some of my observations about my experience of Chronic Fatigue Syndrome, and recovery from it. Since becoming well, I have become a Grief Tender. The more I learn about grief and the grieving process, the more I see some external parallels between grief and burnout/CFS. Although the experience of CFS is predominantly physical collapse, and grief is more emotional although there are impacts on the body too.

With both Chronic Fatigue Syndrome and complicated or prolonged grief, there are some commonalities before, during and after the onset of symptoms or the impact of grief. These include:

Pre-existing loading that underlies the onset of CFS/grief
During the experience of CFS/grief the symptoms are broad – affecting the whole mind/body system
The context and life situation around the person experiencing CFS/grief are important factors
Secondary losses that happen as a result of or after the onset of CFC/grief
Routes to recovery, moving through CFS/grief are life-changing experiences
Recovery will involve growing a new life as part of our unique journey around, through and beyond CFS/grief

The conditions or loading preceding CFS/grief

My understanding and experience of developing CFS was that it was preceded by a ‘loading’ of different physical, emotional, mental and spiritual causes. My mind/body system was trying to deal with more than it could handle.

In my case this included some developmental trauma from unresolved childhood issues, becoming a new step-parent of a very active child, moving house, getting married, working erratically as a freelancer (feast or famine), some digestive issues, poor blood sugar management, being an only child of a parent with a mental health diagnosis, and then a series of infections on top – chickenpox, Hepatitis A, then flu. Although it felt like a normal but chaotic set of circumstances, my system was overloaded and suddenly crashed.

Emotional triggers causing physiological effects

There were many factors in the mix that it took me years to unravel. Adrenal burnout was certainly part of my physiological cocktail. My system was simultaneously on emergency alert, (adrenalin rushes, muscles tensed unable to switch off, digestion suspended), and with an emergency braking mechanism also on, causing more of a freeze response. With the help of a Mickel therapist, (thank you Jane Orton) I began the detective work of seeing my emotional triggers that were causing physiological effects. And my physical symptoms were very real. I also needed to understand nervous system states, and learn tools for self and co-regulation.

“The worst thing about having CFS/ME is not knowing how long it is going to last.” JA

Secondary losses caused by illness/grief

As in someone’s personal grief landscape, the circumstances in the build-up, the particular symptom picture during, and the context it happens in are all relevant. The consequences or secondary losses will also be part of the unique picture of someone’s life. The inner and outer resources, as well as the support systems available will also impact someone’s ability to recover, and at what pace. People have the freedom to make their own choices, but they are also subject to their particular environment, and luck.

“There are very real mental health issues of having CFS, of being in this for so long.” JA

In Grief Tending workshops, I often remind people of the many different influences on their circumstances – which may include culture, faith, class, gendered socialisation, health, neurological wiring, sexuality, trauma history, wealth, family or lack of it, and ancestral histories to name a few. The impacts that land in these terrains create a unique set of circumstances in each of us.

Processing Grief

Processing grief may be an important part of a recovery plan from CFS. There are often pre-existing grief loads from the time before CFS. Then there is always the grief of what has been lost, missed, longed for, and the pain carried since having CFS. As well as the lost hopes and dreams of our imagined futures, there are often lost opportunities, lost friendships, lost identities, reduced resources, and lost time spent with our loved ones.

There are different kinds of chronic energy collapse including Long Covid, Autistic burnout, work burnout, Post Viral Syndrome, and Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis. There can be varying symptoms, durations and overlapping syndromes between them. There may be one apparent cause, although that may just be ‘the straw that broke the camel’s back’. I’m not a medical professional and there are still many competing theories and perspectives on both cause and cure. Grief in its widest sense may be one of many contributing factors. And where there is chronic illness, which precipitates other losses, grief is usually part of the whole picture. All the things that have been lost as a result of any chronic condition, as well as anticipatory grief/anxiety for what is still to come.

“You don’t understand what it’s like unless you’ve been through it.” JA

Grieving Together

Chronic Fatigue Syndrome is a lonely journey. Finding spaces where it is possible to be part of a group experience, while taking care of our needs can be problematic. Finding connection while navigating chronic illness is often beyond our capacity.

Many people who are sick approach our Grief Tending workshops with trepidation, but find them a useful place to connect with others who are going through life-changing circumstances and learning how to be with life’s desperate times and conditions that are so often isolating.

See article on ‘Recovery from Chronic Fatigue Syndrome’

Support Links:

If you are experiencing the symptoms of CFS/ME, consult your doctor to register the onset of symptoms and check for any other possible causes.

NHS Chronic Fatigue Symptoms
ME Association

28 May Dying for Sex

Posted at 20:05h in Culture Reviews by admin 0 Comments

‘Dying for Sex’ is a stunning podcast on Wondery. (The first four episodes are available to listen, but sign in to a free trial to hear the last three). It is raw, honest and funny. Molly Kochan and Nikki Boyer are best friends, and invite us into their revealing conversations.

Molly has Stage IV breast cancer, has just left her husband and is on a mission to find out what she likes sexually. On the way, she begins to reclaim her sensuality after a history of abusive relationships. It sounds like a drama, but it is just two friends chatting about life.

Molly’s sexploits are fun, but the intimacy of her relationship with Nikki sucks the listener into a more real, deep and meaningful conversation about sex, death, love and friendship. It made me laugh, and cry, as we hear Molly, and picture her through the lens of Nikki’s loving encouragement.

‘Screw Cancer; Becoming Whole’ is a short book by Molly Kochan. Finished in hospital, Molly is writing the completion of her journey to heal and grow around her childhood trauma. The urgency with which she is writing gives another window into her story, but it lacks the warmth and humour that Nikki brings into the dynamic between them in the podcast.

The ‘Dying for Sex’ TV series takes the bones of the podcast, and some of the themes in the book to create a drama inspired by real events. It takes Molly’s experience of relationships after a Cancer diagnosis and develops them into a credible script. Playing with the details that are shared in the book and podcast, the series takes the central premise and creates a hugely entertaining drama. It is both funny and moving as it challenges the viewer’s perception of how someone with Stage IV cancer should behave.

I love the way love and loss entwine in the narrative. Molly’s story is both tender and real, portraying sexual intimacy. The themes of both sex and death are explored with a refreshing openness, and humour.

Laughter in distressing circumstances is often a much-needed valve when someone is grieving. How to have fun and experience pleasure is also an important ingredient in end-of-life care, that may be unexpressed by someone with a life-limiting condition, or overlooked by care-givers. Take heed, it is never too late to try something new, or ask for what you desire.

For Grief Tending workshops that honour both love and loss as interconnected, see here.

18 Apr Late Fragments

Posted at 19:19h in Book Reviews by admin 0 Comments

‘Late Fragments’ by Kate Gross is written from the lens of a terminal cancer diagnosis. I read books that take me into this life-affirming territory because they make me tingle. I suspect I guzzle mortality memoirs in the way others read chick lit. In her own words:
“I know that people will want to read my story because it takes them to the edge of their fears about dying young, leaving the people who need them.”

Kate Gross describes her triumphs and failures as she approaches her death. She speaks of “our future that melted away overnight.” For those who know Francis Weller’s Gates of Grief, this loss of future is a clear example of ‘What we expected and did not receive’. The imagined readers – her children in years to come, set the tone of the book’s intention. Through writing she manages her living time, and plans her dying time.

Like any ‘momento mori’, this reminder of death is also an invitation to live with eyes open. These ‘Late Fragments’ are written to capture and to encourage us to find wonder. When the outer activities of life are stripped away, and we slow down, can we also enter into the realm of wonder?
“All I can do is explain how wonder emerged for me as the world and I met, and how it has grown stronger and brighter even as my world has got smaller and dimmer.”

‘Late Fragments’ is not written by an expert on cancer, or on grief. It is an engaging personal account from the front line of a terminal diagnosis of colon cancer. It is packed with cherished memories of friends and family. The life Kate Gross describes is both worldly and ordinary. Time is spent on the sofa, in parenting and includes words like ‘bum’.

In fact, I was horrified that because of a reluctance,
“to speak of our rear ends, most colon cancer is detected between stages two and four,” with detrimental consequences. So, I encourage us, in honour of Kate that we challenge the inhibitions that delay us from checking our bowel movements and symptoms that may be warning signs.

Kate Gross also speaks for the person-who-is-dying’s needs for the kind of communication that comes with sensitive offers and ordinary chat, without advice-giving, or the need for a reply. Our own anxiety or desire to do good can burden the person already dealing with much into taking care of others’ emotional needs.

Lines from poets and author’s, are woven into ‘Late Fragments’. Kate Gross’s passion for words enlivens the narrative. She uses them to inspire and illuminate the steps of her own journey towards death.

To find Grief Tending workshops online and in London and Devon, see here.

18 Apr One Last Thing

Posted at 19:03h in Book Reviews by admin 0 Comments

‘One Last Thing: How to Live with the End in Mind’ by Wendy Mitchell is written from the inside of a life-limiting condition. She was diagnosed with early onset dementia at 58. Since then, she has written three books about her journey of life post diagnosis.

Mitchell writes with down to earth good humour, giving us an insider’s perspective of this unkind progressive disease. Dementia dismantles the life she had before, yet she is full of optimism about what is still possible to achieve. She is inventive in the way she adapts to the challenges. It is powerful to hear her voice which brings understanding and hope to others navigating dementia.

“I am aware that there is an edge now, even if I cannot see it as it comes closer. I am aware that more days after I finish writing will be spent in the fog – until the day when I don’t find my way back out again?”

In ‘One Last Thing’, she contemplates death in her characteristically practical way. Wendy Mitchel is a passionate advocate for those with dementia. She checks for judgements and assumptions that diminish the potential of people with the disease. Mitchell is also pragmatic about the paperwork and decision-making to be done. There is a great deal of ‘sadmin’ as she looks death squarely in the eye. She encourages everyone to have honest, thoughtful conversations. This is especially important in preparation for end-of-life in order that people may make their preferences known.

“I am not trying to tell you how death must be done, or how it should be done, or how it should feel for you. I just want to gently remind you that one day it will come, and the more prepared you are, the more conversations you are able to have with medical professionals and with those you love, the more empowered you will feel to live in the now – and you don’t need a progressive or terminal illness to do that.”

Wendy Mitchell recommends really thinking about all the options for a good death. This in order that people, especially those with dementia are able to have choices, and agency in those choices while they have capacity.

‘One Last Thing’ tells Wendy Mitchell’s relatable story, and she demonstrates how it is possible to be brave, sensible and kind as she turns towards her own ending.

Post Script

Since the publication of the book, Wendy has died. She did it in the way that she chose to on 22 February 2024. If you want to know more, and this may be a plot spoil, head to her final blog post.

If you are looking for somewhere to process grief of all kinds, you can find Grief Tending workshops online and in London here.

28 Sep On Working With Grief: A Conversation

Posted at 08:16h in Conversations, Sarah's Journal by admin 0 Comments

In this video, Max Mora, a bodyworker from Integrated Somatics talks with me – Sarah Pletts, a Grief Tender, about working with grief through the body. Our conversation explores similarities in our understanding of the impact of grief, and our approaches to working with the body.

We tease out the supportive synergy that may happen for someone who has access to both a Grief Tending group process, and more focussed time with a one-to-one bodyworker. Max describes how we both aim to encourage people “at the pace of their nervous system”, when we are working with grief.

As we speak about learning to sit, at ease with emotional discomfort (ours or another’s), Ginger Girl – the cat, makes a guest appearance. She demonstrates the appeal of sitting with two regulated nervous systems. Pets know instinctively how to sit alongside us, to find pleasure when we are calm, and to offer supportive presence when we hurt.

Working with grief in a group, we may discover that “it’s not just me…there’s a magic that happens when we come together.” Max talks of “kind touch”, and how to “meet each other kindly,” as we come into contact with someone who is grieving, and how different that is from the urge to rescue.

We share a similar perspective on creating permission for people to open up and allow whatever is present, without any expectations. Our intention, whether working with grief through Grief Tending or therapeutic touch, is to give space to the whole spectrum of feelings. Working with grief, as Max says, can allow us to “be more fully alive, and able to access joy, to access pleasure and deep belly laughs.” Max goes on to remind us of a very common aversion to the challenge of experiencing grief.

“I want the full technicolour experience of the lovely things, and I’ll have a small version of grieving, because it’s unpleasant.” But we both know, life doesn’t work that way.

You can listen to our conversation here. And find Grief Tending workshops here.

04 Jul Hospital Curtain

Posted at 20:10h in Sarah's Journal by admin 0 Comments

This week I had a routine procedure in hospital. As I waited in a cubicle painted institutional pastel colours, I noticed a tremor of recognition. Many explicit memories – filed as linear stories – came to mind, along with implicit ones – sensations and emotions stored in the body. The hurried sound of curtain swishing on rail, and the illusion of privacy felt so familiar.

Not every hospital visit has been traumatic. Some have brought relief or comfort. Sometimes I was playing a supporting role. But I am aware of how many pivotal moments in my history have happened in or next to a hospital bed.

This has been somewhere that I have experienced initiations. Now, as I watch the light sneak onto the wall through the gap in the curtains, it reminds me of my own mortality. As I grow older, this may be somewhere I visit more often. I am at the stage of life where conversations often begin with an exchange of symptoms. This is a time for me, where there is moment of balance between having processed much of what has happened so far, with anticipating the unknown that is yet to come.

Some of the challenges in my life have arrived as sudden impacts, others have been slow burning troubles, and there are the known and unknown in the future. People bring things to a Grief Tending session from any or all of these sources of grief. Sometimes there is just a sense of absence or longing.

Sometimes there are turning points in life when you recognise that something needs to shift, and sometimes life doesn’t give you the luxury of a choice. We hope that the spaces we hold offer a safe enough space to explore all of this.

You can find our next events and links to book them here.

23 Mar 33 Meditations on Death

Posted at 13:23h in Book Reviews by admin 0 Comments

The second line appeared on my lateral flow test. I grabbed a few essentials from the kitchen and retired to bed. As symptoms circulated around my bronchial passages, I reached for ‘33 Meditations on Death: Notes From the Wrong End of Medicine’ by David Jarrett. Covid 19 does not appear until the final chapter, but contemplating age and vulnerability proactively are themes of the book.

David Jarrett MD is a long serving physician providing medical care to older people. If you are, or have been involved with the care of someone frail or elderly, you may already be aware of the medical ‘twilight zone’, the spectrum between life and death that older people can often fall into.

There is a great deal of sound thinking, alongside compassion and humour in the stories that come from Jarrett’s long service in geriatric and stroke care. “We are obsessed by mortality in modern health services, when we should be paying greater attention to quality of life. One is very easy to measure and the other virtually impossible,” he suggests.

Over a career that spans decades, we are given an inside perspective on the changes in medical practice, both for good or ill. We are treated both to the stories of patients, and doctors, who are dealing with mortality. It is a wise and engaging read, that brings insight to the perfect storm, “of longevity, prolonged infirmity and sheer numbers.” We are dying longer, as a consequence of living longer.

Some of the examples he brings have an element of tragicomedy about them, but in the face of uncertainty and the limits of medicine, the warnings he shares are important. Seventy is the new sixty for the lucky ones, see here for Advantages of Age who celebrate this.

However, there are wider implications to consider for us as ageing individuals. And for our collective greater good as a society, we need to debate these issues. As Jarrett says, “There is a burden of disease and there is a burden of treatment, and these two need to be balanced.” In his own words, “This is a call to arms for all of us to prepare and share more radical plans for our futures and perhaps in old age relinquish some of our considerable financial and electoral power.”

27 Jun Dance Me to Death

Posted at 16:46h in Culture Reviews by admin 2 Comments

My spine is tingling as I watch ten performers solemnly walk along the path towards me, in Kensal Green Cemetery. They move at funeral pace, each holding a grief object, in a ritual procession of remembrance. I am here to support an intention to hold death in my awareness along with these non-professional dancers who, all over 60 are themselves turning towards mortality.

Along with singing and making music together, dance is one of our oldest and most universal human activities. In this time, this mode of expression is often side-lined as a pastime of the young or drunk. My winding and sensuous dances keep my ageing body moving, but also allow my soul to connect with others. One of the advantages of age for me, is a letting go of inhibitions – to be less self-conscious about my image in others’ eyes. We bumped into a friend on the way to the cemetery by chance, who told us that dancing in community was what sustained their parents (now late 70’s).

Rose Rouse – a passionate dancer and advocate for the ‘Advantages of Age’ was the instigator of ‘Dance Me to Death’. She met Rhys Dennis and Waddah Sinada of Fubunation – young dancers who are exploring black masculinity in their choreography, encouraging diverse collaborations and audiences. Rose was excited by Rhys and Waddah’s work. But, in order to make this intergenerational project happen said, “I had to persuade them to do this project with me.” They said “Yes”, and the project emerged as a collaboration – devising, dancing and exploring their experiences around death and grief. The outcome is a performance, photographs, and documentary film in the making.

The cemetery is a beautiful backdrop of caryatids, columns, and tombs surrounded by trees, and just enough wildness. Reminiscent of the angels that reach out to one another from the top of one mausoleum, the dancers stretch and connect. As the dancers claim the grand steps of one chapel they move, dancing with the edges between life and death. Cello and percussion accompany their coming together in group pieces and duets that are tender with moments of surprising energy.

Informed by mortality, and the uncertainty of Covid rules and weather, this nod to death felt like an achievement against the odds, and a celebration of life.