Annie Brewster – Grow Mindfulness

Writing “In Community” for Healing

During the recent Healing Through Writing Festival, Grace Quantock presented on the topic, Living Well with Chronic Illness. Grace maintained that people with chronic illness often have to deal with missed symptoms, explaining away illness, and social exclusion. She stated that it is often harder to gain belief from others than to deal with the symptoms themselves.

Grace identified an experience that I have had with diagnosis of chronic illness. She indicated that people with chronic illness can produce “exhaustive documentation” only to be ignored by medical professionals. In my case, I spent three hours documenting the major events and symptoms in my medical history over 10 years only to have an Allergist refuse to read the document or add it to my medical file.

The barriers to writing for healing

In a previous post, I explored the idea of memoir-writing for healing as proposed by Janelle Hardy. Grace argued that there are often barriers to our attempts to write as people with chronic illness. She suggested that isolation, both emotional and practical (in terms of access to information), creates a personal barrier.

The writing community itself can also establish barriers by promoting “a productivity culture” that is translated into words-per-hour or words-per-day (e.g. setting a goal of writing 2,000 words per day). The assumption, as Grace points out, is that writing is a linear process. However, people with chronic illness have a different relationship to writing time in that they can be intermittently or chronically disabled in terms of capacity to write. They may have impediments like brain fog, arthritic limbs, chronic fatigue and/or nausea.

Grace maintained that there is an assumption in the writing community, and especially amongst publishers, that writing has to “be a certain way”. There is a tendency to favour universal experience over individual stories – personal experience and coping strategies are often discounted. Writers with chronic illness can be blocked by literary gatekeepers who argue that their stories are “too niche” or “not literary enough”.

Grace suggested that we can too easily succumb to the expectations and standards of others by thinking that we “do not have the credentials” to write or “lack the recognition or prestige” required to publish. This mental barrier makes it harder for us to envisage our “own writer’s journey” (which will be unlike that of anyone else). Often relevant credentials are difficult to acquire because of lack of access to training and/or the availability of empathetic mentors.

She argued that the real or core questions relate to “what we hope for in the writing” and what will have the most positive impact for us.

Strategies for overcoming the literary barriers to writing with chronic illness

According to Grace, a starting point is to change our expectations of ourself in terms of written output but also in terms of healing outcomes. She warned that writing with the mindset “that writing has to fix us” (it must be “reparative”) can actually harm us. An “extractive mentality” can do us violence. She suggests that instead of trying to “write to heal”, that we view writing as “a way that is healing”. The process itself is healing; the healing outcomes are beyond our control. We have to move from an outcomes-focus to a process focus and write the best way we can, given our physical, mental and emotional states.

Contribution to a literary lineage

Grace suggested that we reframe the writing process by acknowledging that we are contributing to a “literary lineage” – writers with chronic illness – and, in the process, creating our own legacy. There are writers with chronic illness who have considerable literary achievements such as Alice Wong (with Lupus); Flannery O’ Connor (with Spinal Muscular Atrophy); and Virginia Woolf (serious mental health conditions). Over recent months, I have been inspired by Jennifer Crystal, author of One Tick Stopped the Clock: A Memoir, who contracted Lyme Disease from a tick bite. Jennifer is a weekly columnist for the Global Lyme Alliance, creator of the Writing to Heal Immersive Program, and story coach/facilitator for the Health Story Collaborative.

Grace argued that by writing with chronic illness we are creating documentation that can lead to personal and system change. By navigating the process of writing about difficult or challenging health situations, we are creating “words that will outlive us” and offering possible solutions or strategies for someone else experiencing chronic illness. She stated categorically that “the poem we write today might be a lifeline somebody else finds after our lifetime”.

Grace contends that our writing – whether as a novel, memoir, blog, poem or journal – can be a “springboard for the next person” as we can be offering alternatives and providing evidence of their efficacy. We can reframe our solitary writing as “part of a larger network” and a contribution to our “collective experience, collective tapestry and collective legacy”.

Cultivating our literary community

A strong theme throughout Grace’s presentation is her emphasis on networking within our writing community. She proposes three core strategies to take advantage of the mutual support and resources that can be available through such a network:

Name three people who are part of your literary community. In thinking about this, I was able to name Annie Brewster, Jennifer Crystal, and Jennifer Harris. Annie is the creator of The Health Story Collaborative (HSC), designed to “harness the healing power of stories”. She is the author of The Healing Power of Storytelling: Using Personal Narrative to Navigate Illness, Trauma and Loss.
Identify an element of their work that resonates with you. I have networked with each of the authors mentioned above when they have been facilitators for the monthly, online Creative Meetups, hosted by HSC. The Meetups are a network activity for writers with a chronic illness. Each of the facilitators have a profound knowledge of narrative therapy and a very strong commitment to helping people to heal through shared personal narratives.
Exchange literary support with other members of your literary community, e.g. re-tweet, write supportive blog posts and create book reviews for members of your literary community. I have had correspondence with each of the previously mentioned Creative Meetup facilitators, and they have read my blog posts and poems and offered support and encouragement. I have also mentioned their work and promoted their writing in my blog posts, e.g. articles about Annie Brewster and Jennifer Crystal. The Creative Meetups themselves involve a community of writers who willingly share their stories and their writing. The participants offer supportive challenge and the constant encouragement to move towards healing.

Reflection

Grace has made me more aware that I am not writing alone as a writer with chronic illness and that I am not just writing for myself and my own health. As I become more aware of my participation in a literary community, I can become more conscious of how I can support, and be supported by, others in my literary community,

This newfound appreciation enhances my gratitude for my ongoing access to an understanding literary community where I don’t have to explain myself, defend my position or pretend to be someone other than who I am.

As we collaboratively grow in mindfulness through our reflections and writing, we can increase our connectedness, build our mutual support and deepen our insights.

____________________________________________

Image by Pete Linforth from Pixabay

By Ron Passfield – Copyright (Creative Commons license, Attribution–Non Commercial–No Derivatives)

Disclosure: If you purchase a product through this site, I may earn a commission which will help to pay for the site, the associated Meetup group and the resources to support the blog.

How to Write with a Chronic Illness

At the recent Write Your Own Way Summit, Sandra Postma spoke eloquently about how to write with a chronic illness. Sandra is a book coach for writers with chronic illness. She is especially well-qualified for this role having studied journalism and literature at university and undertaken a Book Coach Certification with Author Accelerator. Sandra is able to draw on her own lived experience as a writer with several debilitating illnesses over many years.

She stated that the book coaching role helped to save her life and motivated her to create her own coaching business, Your Story Mentor. Sandra acknowledged the technical aspects of her prior training as a writer but stated that the book coaching course helped her to learn “how to coach a writer both on a craft and on an emotional level.”

Challenges for writers with chronic illness

In her Summit presentation and an interview with Savannah Gilbo for the Fiction Writing Made Easy Podcast, Sandra outlined the many challenges facing writers with chronic illness that exist over and above those experienced by other writers:

Symptoms – writers with chronic illness have to deal with fluctuating energy, brain fog, and times when they are mentally or emotionally not feeling well. Other symptoms may include constant pain, itching and/or swelling of joints (e.g. ankles, fingers, hands, arms) and debilitating symptoms such as migraines or breathing difficulties. Sometimes, it may be impossible for the writer to sit or even to get out of bed.
Low self-esteem – Sandra points out that there is a social stigma associated with having a chronic illness. There may be emotional baggage arising from a lack of social status (lacking a job or having to constantly isolate to manage disabling symptoms). Like many other writers, those with chronic illness feel that their voice is not worth hearing but for the chronic sufferers this self- story is amplified by the sense of not being an active contributor to family or society, but rather being a burden.
Momentum – a key element in writing is momentum, the ongoing impetus to pursue writing whether in the form of a blog, a short story, a novel, non-fiction work or a memoir. Momentum provides energy and motivation but for the writer with chronic illness this is continually punctuated by disability, so there is a loss of momentum as a result of the fluctuation of symptoms.

Feelings experienced by writers with chronic illness

What is not often appreciated is that such writers can experience genuine grief – from loss of identity, family, friends, social activity and work (with its attendant loss of both a meaningful role and income). This, in turn, impacts the sense of self-worth of writers with chronic illness.

There can be anger and ongoing frustration from not being able to do what you used to do with relative ease. Sandra points out that the anger can arise from the knowledge that you “have to surrender to this thing [chronic illness] that you didn’t choose and is with you for the rest of your life”. With this awareness, you can “lose trust in your own life”.

Sandra highlights the fact that you can lose a sense of agency, your underlying capacity to control your body, your thoughts, your responses to stimuli and your actions. This can lead to a sense of helplessness and hopelessness – the loss of a meaningful existence and the capacity to change your debilitating situation.

Strategies to use while writing with a chronic illness

In her Summit presentation and interviews, Sandra proposed a number of practical ways to deal with the emotions, blockages and challenges of writing with a chronic illness:

Break free – a starting point is to break free from expectations, your own as well as that of others. In an earlier post, I wrote about the tyranny of expectations – how they hold us back and lock us into ways of doing things.
Set your own pace – it is important to overcome rule-bound advice such as writing every day for a set time in a set place. You have to determine your own writing pattern based on your capacity at the time. It will be frustrating at times that you can’t write as much as you want, as often as you want or as fast as you want. You have to get to the stage where your are “at peace with your own pace”.
Write where you are comfortable – you don’t have to sit at a desk to write, sometimes “sitting” itself may not be possible (as in Sandra’s experience). You can lie down and use a mobile phone to write or use a dictation device. You will have to overcome the self-talk about what “proper writers” do.
Practice self-compassion – avoid “beating up” on yourself for failing to achieve what you set out to achieve or for not meeting others’ expectations. Self-compassion, kindness to yourself, can enable you to overcome the disabling effects of negative self-talk.
Write what you know – Sandra points out that people with a chronic illness have a “superpower” as writers. Because of their experience of pain and loss, they know about “deep emotions and feelings and the hardship of life”. These are the challenges that everyone meets in daily life, being part of the human condition. This gives writers experiencing chronic illness a distinct advantage. Savannah, in her interview with Sandra, maintained that such writers have “a rare edge that empowers them to connect with readers on a much deeper level”. As Sandra herself pointed out, “books are conduits of uncomfortable emotions and explorations of how to deal with them”.
Start small – if you start small, you can start “right now”. At the outset of her writing endeavours, Sandra found that she could not write a lengthy story such as a novel, so she started small by writing poems and short stories. She acknowledged in her podcast interview that it took “a long time to be right with that” and live with the belief that it is worth the effort. She found, however, by writing short stories across multiple genres, she improved her writing craft and gradually built the capacity to begin writing a novel. She recognised that this novel-writing would take at least three years. Sandra is adopting the “start small” principle with her novel writing by treating each chapter as a short story.
Write a reflective poem – sometimes it is helpful to write a reflective poem to get your feelings out into the open and to help you identify “next steps”. This process can also unearth hidden emotions that are acting as a blockage to your writing.
Join a support community – Sandra indicated that one of the things that helped her immensely was joining a support community. In an interview for CanvasRebel, she expressed her strong belief in “the power of the online community of other people with chronic illness sharing their stories and beliefs”. Her online community reinforced her strength in managing her illness and associated pain, made her feel as though she was “seen” and confirmed that her voice was unique and “deserves to be used and heard”. These personal outcomes have been my experience with the Creative Meetups, hosted by the Health Story Collaborative created by Annie Brewster, author of The Healing Power of Storytelling.

Sandra provides a free guide on How to Be a Writer When You Have a Chronic Illness on her website. She has also started an online support community for writers with chronic illness – The Mighty Spoonies Club. The name of the community is based on the “spoon theory metaphor” of chronic illness.

Reflection

I joined the online Creative Meetup group nearly two years ago and found that the supportive environment and writing exercises helped me “to access and release emotions” and to stimulate my creative expression in the form of poetry. An added benefit is that I am sub-consciously working on my memoir as I explore and share my life story.

Reflecting and connecting with others who are experiencing their own chronic illness has been very supportive. Their shared stories and insightful writing provides me with encouragement and practical strategies to deal with the challenges inherent in my chronic illness.

At our February 2025 Meetup, Jennifer Crystal, our facilitator, introduced a poem by Mary Oliver as a stimulus for our reflection and writing. The poem, The Uses of Sorrow, speaks of receiving “a box full of darkness” but being able to understand over time that “this, too, was a gift”. In our writing segment, we explored the “gift of illness”.

Illness provides a personal growth experience. I’ve had to revisit my assumptions, self-image and goals. Illness helped me to appreciate the small things in life that I often take for granted – that I can see, walk, run, play tennis, reflect, research and write.

It helped me to realise that my identity is not tied to an image of myself as a very fit, competent tennis player. Illness helped me to understand and accept the nature of the human condition – it’s vulnerabilities and frailties and undulating character.

I have been able to share with other people who are experiencing a healing journey. I’ve met some wonderful people who are wise, resourceful and resilient as a result of their experience of managing pain and losses.

Illness has helped me to become more compassionate towards others – to appreciate the pain, sorrow and distress that others are experiencing. It has helped me to keep things in perspective and to savour the present moment. It has forced me to be proactive, resourceful and engaged.

There are times when chronic illness has felt more like an unwanted gift – not desired or returnable. Despite these setbacks, there have been hidden possibilities that have helped me to flourish and enrich my life and my writing. As I grow in mindfulness through reflection, writing and storytelling, I am able to progressively develop agency, resilience and creativity.

I wrote the following poem after reflecting on the positive aspects of my illness and what it has contributed to my quality of life:

The Gift of Illness

Illness is a hidden gift,
with a rich lode of rewards,
that need to be mined,
in the fire of pain and loss.

Challenging assumptions,
reshaping identity,
acknowledging the human condition,
growing in awareness of self.

Opening to others,
appreciating life,
learning compassion,
disclosing feelings.

Discovering poetic expression,
rekindling creativity,
energising writing,
grounding in the present moment.

___________________________________________

Image by Leandro De Carvalho from Pixabay

By Ron Passfield – Copyright (Creative Commons license, Attribution–Non Commercial–No Derivatives)

Disclosure: If you purchase a product through this site, I may earn a commission which will help to pay for the site, the associated Meetup group and the resources to support the blog.

Adopting a Holistic Approach to MCAS and Histamine Intolerance

One of the many things that people with chronic illness have to deal with is frustration with medical practitioners. This can involve misdiagnosis and/or inappropriate treatment that sometimes aggravates the symptoms of the chronic illness. Recently I experienced a number of frustrating dealings with medical practitioners – my GP said that allergies and Mast Cell Activation Syndrome (MCAS) were outside his area of expertise, my gastroenterologist said that MCAS was a “controversial area” (and did not take it into account in a colonoscopy examination) and my Allergy specialist adopted a simplistic, medical model of MCAS and prescribed two very strong drugs with known damaging side effects (without any warnings about their potency or dangers).

Diane Kane describes her incredibly challenging journey to health and her totally frustrating experience with multiple medical practitioners globally who failed to accurately diagnose her chronic illness. Being a professional medical researcher herself, she is now writing a book and providing a library of resources to help other people who are seeking support in their battle with MCAS and/or histamine intolerance.

Jennifer Crystal explains in her book that it took 8 years for her debilitating Lyme Disease to be diagnosed accurately and treated appropriately. Part of the issue blocking accurate diagnosis was the belief system held by Australian doctors concerning the impact of a tick bite that she received while visiting America (ticks in Australia have a significantly different health impact than those in America).

Annie Brewster MD, assistant professor at Havard Medical School, describes her frustration with medical practitioners when she was diagnosed with multiple sclerosis and, in particular, their inability to listen to her story because of time pressures and debilitating medical workload. She wrote her book, The Healing Power of Storytelling, to offer patients with chronic illness “a way through anxiety, confusion and trauma” – a way based on the research-based tenets of narrative therapy.

Annie has applied the principles of narrative therapy in the creation of her website, Health Story Collaborative, which provides a dedicated space for “storytelling for health”. One of her programs is the monthly, online Creative Meetups, a facilitated group that enables participants “to reflect and connect with others in a supportive environment”. Writing activities around stimulus material provide the mechanism for individual participants to identify and share their feelings and, in the process, “to reframe their story and reclaim their life”.

The increasing medical complexity of chronic illness

One of the factors working against the understanding and empathy of dedicated members of the medical profession is the increasing complexity of chronic illness. Dr. Lawrence B. Afrin in his book, Never Bet Against Occam, writes about MCAS and the “modern epidemics of chronic illness and medical complexity”. Lawrence was both a Research Fellow and a hematology/oncology specialist at the time. He was acutely aware of the many people who suffered not only from chronic illness but also not being able to understand, or gain insight into, their complex medical problems. Lawrence highlighted the fact that MCAS patients had a “large assortment” of symptoms and this symptom array varied “from one patient to the next”.

Lawrence researched MCAS extensively to be able to treat his own patients and also to educate other medical professionals about the complexity of the condition. He thought this increased understanding on the part of medical professionals would lead to “diagnosis and improvement sooner rather than later” for patients. Lawrence was at pains to stress that MCAS was amongst the increasing number of medical conditions that involved “chronic multisystem inflammatory illnesses of unclear cause”.

Beth O’Hara who specialised in emotional wellness, naturopathy and genetics explained in a video presentation that MCAS can result in systemic symptoms (such as sensitivity to foods, drugs, chemicals or the environment and related swelling and inflammation), musculoskeletal symptoms (such as degenerative disk issues or arthritis), skin symptoms (including itching, hives, easy bruising), cardiovascular symptoms (e.g. heart palpitations, dizziness or low blood pressure), and/or digestive symptoms (such as cramping, diarrhea, reflux, IBS).

Beth’s lifetime research of MCAS and successful healing processes was driven not only by the complexity of patients’ symptoms in her medical practice but also by her own debilitating experience of MCAS from 7 years of age. She was bedridden by the age of 20, suffered severe anxiety, joint pain and a hypersensitivity to smells and chemicals. The medications she received from medical practitioners frequently made her symptoms worse. She sought assistance from multiple health professionals but found none understood the complexity and multi-system nature of MCAS.

A holistic approach to MCAS and histamine intolerance

Driven by her own health needs and those of her patients, Beth gradually developed a holistic approach to MCAS and incorporated the healing protocol in her medical practice and related website, Mast Cell 360. Through this site, Beth offers a wide range of resources and access to practitioners especially trained in her MCAS healing protocol. For example, she offers a verified list of low histamine foods and related recipes. Her blog provides insights into the nature of MCAS, the Mast Cell 360 healing protocol, and a Mast Cell Activation Syndrome Symptoms Survey.

In her video presentation, Beth discussed her holistic approach to MCAS and identifies three core components: (1) addressing the root causes of your MCAS condition, (2) eating the right foods and taking the right supplements (her incorporated case studies illustrate that identifying the right supplements involves a trial and error approach, while identifying the right foods can involve an elimination diet and a desensitising process), and (3) “supporting the wiring of the body”).

Addressing Root Causes of MCAS

One of the things that are often overlooked by medical practitioners are the possible causes of MCAS for an individual. Beth makes this consideration one of her three key aspects of healing. She argues that you have to address the influence of these individual factors if you are to achieve healing from MCAS. Beth provides a Guide, 7 Common Root Causes in Mass Cell Activation Syndrome, to help MCAS sufferers “discover their own unique triggers” so they can work with these.

Beth maintains that the majority of health care practitioners are “unaware of these underlying factors” differentially affecting individuals and, in consequence, they tend to resort to “one size fits all” solutions such as a low histamine diet and/or antihistamine medication. Her Root Causes Guide offers insight into MCAS triggering factors and also ways to address them. Beth maintains that “the majority of my clients with MCAS have at least 4 of these root causes”.

Consuming the Right Foods and Supplements

Eating the right foods is foundational to healing from MCAS. In many cases, the initial action with MCAS is to avoid foods that result in a flare-up. Specific food allergies can be determined via an elimination diet or, more objectively, by undertaking a “skin prick test” and/or blood tests.

Beth strongly supports the use of supplements which form one of the cornerstones of her Mast Cell 360 healing protocol. She provides examples of the trial and error use of supplements in the two case studies she discusses in her video presentation. Beth urges patients to seek the guidance of a qualified health professional when considering supplements to address nutritional deficiencies because of the potential sensitivities that could be involved.

Beth provides additional online guidance in her Master Class, The Top 8 Mast Cell Supporting Supplements. In this course she covers aspects such as:

the benefits of each supplement and how to determine what is right for you
how to correctly introduce supplements and how to troubleshoot sensitivity problems
what supplements to avoid.

Supporting the wiring of the body

The reference to supporting the body’s wiring relates to processes designed to activate the parasympathetic nervous system because of the negative impact of MCAS on the vagus nerves, reflected in the body’s over-active histamine release. With MCAS, the body will often treat healthy foods as invaders because of the hyper-activity of the immune system – an impact of damage to the vagus nerves. The parasympathetic nervous system induces relaxation and improved digestion and is often described as the “rest and digest” system.

In her video presentation Beth was quite adamant that MCAS cannot be treated effectively without some work being done to activate the parasympathetic nervous system. She stated that “discovering how the body is wired is 50% of the healing process”. Beth provides an online Master Class to Reboot the Mast Cell Nervous System, incorporating parasympathetic re-balancing, vagal nerve signalling and re-regulation of the limbic system. Tools offered as part of the package to achieve these goals include specialised yoga practices and breathing exercises.

Reflection

I have personally experienced the confusion and frustration that comes with chronic illness and interactions with medical practitioners. According to the level1/level2 typology advocated by my Allergist, I do not have MCAS. However, taking Beth’s holistic view of MCAS (and recognising that Mast Cells are everywhere in my body), I actually meet her criteria for MCAS. I have “systemic symptoms” (environmental and food sensitivity, swelling and sweating), skin symptoms (rash, hives, itchiness and easy bruising) and musculoskeletal symptoms (multilevel disc degeneration and arthritis in my fingers).

The core issue with inadequate diagnosis of chronic illness is that proposed treatments will also be inadequate and potentially damaging. With Beth’s holistic approach, I can identify a number of areas I need to work on that are not confined to medication

I have recognised, for example, that I need to work with the following root causes of MCAS which are relevant to my condition:

food triggers (beyond histamine)
infections and toxicity
nutritional deficiencies
early childhood trauma (adverse childhood experiences)

I have purchased Beth’s Master Class to Reboot the Mast Cell Nervous System to help me achieve a quietening of my nervous system and reduce my level of immune reactivity. As I grow in mindfulness through breathing exercises, Tai Chi and meditation, I can activate my parasympathetic nervous system, stay focused on the present moment (not triggered by depression about the past or anxiety about the future), be more creative and proactive in exploring my healing options, and develop increased resilience in the face of constant setbacks.

______________________________________

This post is provided for information purposes only and is not intended to replace personal medical advice provided by a trained medical practitioner. Please seek advice from a qualified professional before deciding on treatments for yourself or other members of your family.

______________________________________

Image by Gerd Altmann from Pixabay

By Ron Passfield – Copyright (Creative Commons license, Attribution–Non Commercial–No Derivatives)

Disclosure: If you purchase a product through this site, I may earn a commission which will help to pay for the site, the associated Meetup group and the resources to support the blog.

Managing Chronic Illness

The November Creative Meetup was facilitated by Jennifer Crystal, author of One Tick Stopped the Clock. Jennifer is a “story coach” with the Health Story Collaborative which hosts the online Meetups. She also conducts the Writing to Heal Immersive at the Grubb Street Center for Creative Writing. Jennifer has a long history in writing about her experience with Lyme Disease and sharing her knowledge with others who have contracted the disease and other tick-born illnesses. Since 2013, she has been the writer of a weekly column for the Global Lyme Alliance and her enlightening and inspiring blog posts can be found on the Alliance website.

Jennifer’s medical journey

Jennifer was bitten by a tick on a camp when she was 19 years old but had to experience many frustrating years of misdiagnosis. At 25 years of age, she was finally diagnosed with Lyme Disease which led to the Epstein-Barr virus (EBV) infection that causes Mononucleosis. Jennifer was bed-ridden and experienced multiple symptoms that doctors had not been able to explain. In her period of misdiagnosis, she was variously told “to rest”, “eat things close to the ground” (e.g. chicken and turkey), and “talk about your feelings” (assuming that the illness was psychosomatic, not real). Grace Currey from Australia (bitten by a tick in the US) provides a vivid description of what it was like to have Lyme disease that was not recognised by medical professionals in her home country.

Jennifer Crystal had a five-year journey to wellness and remission of the Lyme disease. However, she then had to experience a “searing relapse” and eventually found a new balance and developed her teaching-coaching career. Earlier, she was unable to commit to relief teaching because of her inability to guarantee that she could manage physically or emotionally. She is now a leading proponent of the multiple benefits of sharing your health story and teaches people how to write-to-heal.

Stimulus questions during the Creative Meetup

Typically the Creative Meetups begin with a writing stimulus of some kind such as a poem, article or book extract. Jennifer introduced herself to the group and read a few brief sections from her book which served as a basis for creative writing by group members and story sharing in the group. Jennifer’s stimulus questions flowed naturally from her book extracts:

Write about a time when you felt brushed off and what you wished that person could have seen on the inside, or
Pick a single object related to your story and write about it in a poem or prose – see where it takes you!

These were both challenging and fruitful questions that led to some insightful, creative writing by the group and follow-on sharing and discussion. The level of creativity, resilience and insight in the group always amazes me. The Creative Meetup process illustrates the healing power of storytelling and demonstrates the benefits of this approach to “narrative medicine”.

Jennifer’s healing strategies

Besides the medical solution of months of antibiotics, Jennifer identified the need to change her mindset about her chronic illness. She adopted a number of strategies to achieve this:

Integrating chronic illness into her life – she established a “new normal” which addressed the question, “How to live well in the context of a chronic illness?”. This very much involved self-acceptance and avoiding denial. It also meant acknowledging that there was “no going back”.
Shedding an identity made impossible by the chronic illness – Jennifer’s dream was to become a skiing instructor – a role very much tied up with her self-image and personal goals. This identity was no longer possible given her disabilities precipitated by her chronic illness. She had to shed her ”skier instructor identity” and find a new sense of self. She asked herself the question, “if I can’t [follow this dream], who am I?”. This required her to value herself for who she was, not who she might be or could become. She recognised that she was still a caring person, who had friends that she connected with, and was still a writer.
Pacing herself – slowing down and recognising that she needed frequent sleep and suffered from brain fog and other debilitating symptoms. It meant napping each day, taking on freelance writing, listening to her body and sharing the load by moving in with her parents. It also meant building stamina gradually, not trying to achieve her previous “workaholic” status. It required her to accept that things would take much longer than previously to complete and that healing from chronic illness is not a linear process, but an undulating journey of indeterminate length.
Learning to say “no” – part of self-care during chronic illness is to being able to say “no”. Jennifer reiterated the view that “No is a complete sentence”. Saying “no” enables us to set personal boundaries. Jennifer encouraged us not to fall into the “explanation trap”, which itself consumes energy and can lead to exhaustion and frustration. We don’t have to explain everything or give a reason for our “no”. She suggested that we could use her phrase, “No, that would not be healthy for me now”.
Writing – the process of writing enables our inner landscape to become outer, to express the feelings that are hidden inside us. Writing can change our mindset and create freedom. Initially, Jennifer could not write about her illness and all that it entailed, so she concentrated on writing to her friends and family. Eventually, she was able to address the issues of her chronic illness, including the challenge of “not being seen” or understood. She found that writing enabled her to be more honest and vulnerable. It helped other people to see the effects of chronic illness and to become more compassionate in their interactions with others.
Joining a community – the Health Story Collaborative (HSC), for example, provides a community where people are encouraged to share their health stories either verbally or in writing. Their Creative Meetups are one form of regular online interaction in a community that provides social support and encouragement. Jennifer found that undertaking a course in creative writing enabled her to share her chronic illness with her classmates who did not judge her, were in a learning mode too and were exploring making the “inner world” visible. She also noticed that people were better able to assimilate information about an individual’s chronic illness when it was shared in written form.

Reflection

In the discussion that followed the creative writing of participants, one major issue emerged. This involved people not understanding the hurt that their well-intentioned words can cause to someone who is suffering from chronic illness. Comments such as “You look good” or “You don’t look ill to me” can be particularly hurtful when someone with a chronic illness has gone to the trouble (despite the difficulty involved) to “dress up” or put on a “façade” when they are going out in public (leaving their bed and track pants behind)!

The well-intentioned comments can be experienced as “devaluing” the experience of a person with a chronic illness. It can also trigger memories of mistreatment by the medical practitioners who were unable to relate the presenting symptoms to their “medical cookbook”. Annie Brewster (founder of HSC) contends that many patients with chronic illness experience “frustration, invalidation and exhaustion” when their ongoing symptoms don’t fit neatly into the “diagnostic algorithms” of medical practitioners.

As we grow in mindfulness through reflection and sharing our stories, we can increase our sensitivity to the situation and needs of others and experience what Jennifer describes as developing “greater compassion for others”.

During the creative writing segment of our Meetup with Jennifer I wrote the following poem to reflect some of the earlier sharing and my own experience of dealing with medical professionals who consider the existence of MCAS (Mast Cell Activation Syndrome – my chronic illness) as controversial as the concept of Lyme disease:

Validation and Accommodation

There’s no place for me in cookbook medicine –
so I don’t have an illness,
it’s all in my head.

Until something happens that is considered serious –
then perspectives change.

I appreciate my body –
the millions of daily decisions,
the miracle of breath,
the ability to write, walk, run and play tennis.

Now my body seems to be letting me down –
treating good food as invaders,
hypervigilant, ever on the alert.

My new bodily reality –
reflecting the dark and light of nature,
creating a challenge to accommodate the “new normal”,
with its remissions and relapses,
enabling and disabling in unpredictable ways.

___________________________________________

Image by Márta Valentínyi from Pixabay

By Ron Passfield – Copyright (Creative Commons license, Attribution–Non Commercial–No Derivatives)

Disclosure: If you purchase a product through this site, I may earn a commission which will help to pay for the site, the associated Meetup group and the resources to support the blog.

Autumn: A Time for Reflection and Shedding

The Health Story Collaborative sponsors a monthly, online Creative Meetup for people anywhere in the world who are experiencing chronic illness or disability. The Meetup via Zoom is facilitated and is designed to enable participants to spend time writing while in a supportive community and, in the process, “to access and release our emotions, personal stories, and creative spirits”. The Health Story Collaborative was created by Dr. Annie Brewster, author of The Healing Power of Storytelling: Using Personal Narrative to Navigate Illness, Trauma and Loss.

During our Creative Meetup session in September, Jennifer Harris (our facilitator) guided us in reflecting on Autumn and the significance of the season in terms of harvesting and shedding. By way of stimulus, Jennifer quoted Mary Oliver’s Fall Song and the words of F. Scott Fitzgerald, “Life starts all over again when it gets crisp in the fall”. This led to a session for our creative writing around the themes of “harvesting” and “shedding”.

Autumnal reflections

The four seasons of the year are often used to represent times of transition. Vivaldi’s Four Seasons – “four violin concerti giving musical expression to a season of the year” – epitomises the seasonal transitions we can observe in temperature, the migration of birds, changes in landscapes and in human behaviour. Autumn is associated with harvesting, the gathering of food and growing fur by animals to prepare for the impending winter and significant temperature/weather changes. Many cultures celebrate the arrival of autumn with rites and rituals, especially the Autumnal Equinox (when day and night are equal in length) occurring at the start of Fall (Autumn).

Autumnal rites and rituals often signify change and harvesting. In Japan, the National Autumnal Equinox holiday is a time dedicated to paying respect to “deceased parents, grandparents, and other family members”. In India, Autumn is a time of cleansing. There are various rituals involving shedding to reflect the falling of leaves and regeneration during this season.

Reflections on harvesting

Harvesting is a time of reaping what you have sown. Our reflections focused on the metaphorical meaning of harvesting in terms of abundance or achievements realised throughout the year. We were asked to reflect on blessings we experienced, tending/nurturing received, projects accomplished, and personal growth. Associated with these reflections was encouragement to express gratitude for what we had harvested in our personal life.

I noted the following in terms of my “harvest” during the 2024 year:

Joined the Creative Meetup group of the Health Story Collaborative and participated in the monthly sessions
Integrated the themes and discussion of the Meetups into my blog posts
Wrote poems that reflected the themes of the Meetups and related blog posts – giving creative expression to my feelings
Conceived and structured a book on management – for co-authoring with my colleague (co-facilitator of 80 longitudinal manager development programs, conducted over 16 years)
Organised a publisher for our book and signed a contract for assisted self-publishing
Completed the first draft of 20 chapters of our book on management
Wrote the following posts exploring ways to express gratitude and sharing my gratitude for what I have experienced and am experiencing:

In our discussion of harvesting we acknowledged that it was okay to “harvest less”, given that all participants in the Meetups are people suffering from chronic illness or disability who often experience setbacks in their recovery.

Reflections on Shedding

During autumn we can observe the trees and plants shedding their leaves and fertilising the soil with the decaying material – death generates new life.

There are many things that we can shed if they are holding us back from realising our potential – e.g. identity, old beliefs or expectations. During the Creative Meetup I became aware of the unrealistic expectations I was placing on myself in terms of output for my co-authored book on management. The expectations were not coming from my co-author who is currently consumed by her caring role for an ill relative. The expectations are my own – setting a timeline and trying to determine a daily output.

What I realised is that my personal output expectations needed to be shed in the light of the continuous disruption I am experiencing in relation to health-related issues and medical testing. I have been losing momentum in my writing because of the continuous need to undertake important health-related tasks. I have to accept that this is my current situation and shed my expectations about high levels of output in my writing. I have already changed my expectations of the frequency with which I produce a blog post. However, to date, I have failed to adjust my expectations concerning writing my co-authored book.

My participation in the Creative Meetup with the focus on the autumnal shedding theme, highlighted the need for me to shed my current expectations about output for our book in order to create the freedom and space for other important things such as maintaining good health and my connections with family and friends.

Reflection – a poem

The seasons can help us to grow in mindfulness by enhancing our observation of what is changing around us and cultivating gratitude for what we have experienced and achieved. Autumn promotes reflection on what we have harvested and what we need to shed. I wrote the following poem to reflect the process of shedding:

Autumnal Shedding

Autumn leaves falling softly
Silently seeking the soil.
Shaken from their anchor
Shrivelled, shrunken, distorted shapes.
Shedding, signalling rebirth
Death begets new life.
New growth, new possibilities
Transcending the past.

___________________________________________

Image by Sven Lachmann from Pixabay

By Ron Passfield – Copyright (Creative Commons license, Attribution–Non Commercial–No Derivatives)

Disclosure: If you purchase a product through this site, I may earn a commission which will help to pay for the site, the associated Meetup group and the resources to support the blog.

Healing Through Creative Storytelling

I have previously written about the Health Story Collaborative created by Dr. Annie Brewster M.D. The Collaborative provides an online platform for individuals to share their story (through any medium) about their health challenges and their road to recovery. The stories provide healing for the storyteller and ongoing inspiration for others to overcome the challenge of ill-health in whatever form it takes. Annie Brewster is the author of The Healing Power of Storytelling: Using Personal Narrative to Navigate Illness, Trauma and Loss.

Creative Meetups

One of the programs offered by the Health Story Collaborative is Creative Meetups that are designed to cultivate “writing for expression and connection”. They are based on the firm belief that artistic expression of a person’s story can help them “find hope and healing”. These free workshops are offered every second Wednesday via the Zoom platform – they only require prior registration through the website.

The Creative Meetups are currently facilitated by Annie Robinson, who has completed a Masters in Narrative Medicine and is a qualified meditation, mindfulness and yoga teacher. In her private practice, Annie helps health professionals, including nurses and doctors, by training them in wellbeing, reflection and resilience. She also assists individuals in various life transitions and is co-curator of the podcast for health professionals, Thriving in Scrubs.

My experience of a Creative Meetup

I recently participated in my first Creative Meetup – initially with some uncertainty, not knowing what would be involved and how vulnerable I would feel. The Meetup facilitated by Annie had about 12 participants, both male and female. The process usually involves Annie providing some form of stimulus for reflection followed by a period for individual creative writing that can take any form a participant desires, e.g., a poem, picture, narrative or dot points.

Annie explained at the outset that she was departing from her usual practice of having two participants read out a piece of writing, e.g. a poem, that can act as a stimulus to reflection. On this occasion, she shared an abstract painting that featured a number of colours with a pattern that suggested “reflection” to me.

Our Meetup process involved an initial two minute writing task where we reflected on what the painting meant for us as individuals, there being “no right answer”. This was followed by a brief sharing by some people who wished to share with the larger group. We were then assigned the task of taking a sentence from our earlier reflection and expanding on this over a period of 20 minutes of individual creative writing (with no restrictions on form or length).

When we had completed our creative writing, Annie placed us into Zoom “rooms” of three or four people to share at another level. Participants were encouraged to share only what they felt comfortable sharing with no pressure for full disclosure. The small group environment enabled rapid rapport building and a degree of openness that was disarmingly honest (destroying any erroneous first impressions that may have been formed).

As one participant commented in the larger group, there was a common bond amongst participants in that we were all dealing with a health challenge (however varied in nature and complexity) and were seeking healing through writing and sharing. Reg Revans, the Father of Action Learning, would describe us as “Comrades in Adversity” (or as others put it, “Comrades in Opportunity”).

The environment created through the Creative Writeup process was one of trust that facilitated openness and vulnerability by participants. There was a shared sense of journeying towards healing with the aid of the understanding, empathy and mutual support offered by fellow participants. Annie’s low-key facilitation style and active listening modelled appropriate behaviour for participants.

I was blown away in the small group by the creative writing that was shared. In one case, this involved a poem that expressed the meaning for the participant of each of the colours in the painting – an insightful and revealing piece of writing that we asked the storyteller to read a second time because it was so rich. Another involved an allegorical story that was emotive and self-disclosing and left us all feeling loving kindness towards the person who shared so vulnerably.

One of the features of the small group was the way that one person’s shared reflection stimulated reflection by another person and achieved a deeper level of self-disclosure. Participants could relate to some aspect of a shared situation, response or recovery approach. We were each able to learn from the storytelling.

Reflection

During the small group sharing, I was able to share with others how expressing gratitude for what I am able to have and do was a recovery mechanism for me following my diagnosis of multi-level spinal degeneration. It also empowered me to seek alternative medical assistance in the form of an exercise physiologist who helped me return to tennis when my doctors told me that I would never play again.

The painting that Annie shared reminded me of the art of reflection – having spent most of my working life in studying, teaching and practicing action learning. Reflection underpinned the way I played tennis, conducted workshops, managed people and interacted with others.

More recently, through reflection, I came to understand that one of my personal barriers to active listening was my need to come from an “I know” perspective rather than what Frank Ostaseski recommends as a “don’t know mind”. The “don’t know” approach is foundational to action learning, so my listening behaviour was not congruent with what I espoused about action learning. Reg Revans reminds us that, ”If you think you fully understand something, you are not only going to get yourself in trouble but others as well.” Reg encourages us to “ask fresh questions” and to develop “questioning insight”. He frequently quoted Isaac Newton’s comment about studying some interesting shells and pebbles in his lifetime “whilst the great ocean of truth lay all undiscovered before me”.

At the time, I attributed this personal barrier to active listening to my many years as an academic. I realised, too, that the “I know” perspective accounts in part why I had so much resistance when trying to introduce action learning into my university. It also explains why in the first year of an action learning program that I was facilitating in another university, the hierarchy insisted on removing “become a learning organisation” from the vision statement for the program (they re-inserted it after their experience of the first year of the program and its outcomes).

As I grow in mindfulness through reflection and activities such as the Creative Meetups, I am better able to develop resilience to deal with life’s challenges, gain increased self-awareness and cultivate deep listening to enrich my relationships.

________________________________

Image by Peter H from Pixabay

By Ron Passfield – Copyright (Creative Commons license, Attribution–Non Commercial–No Derivatives)

Disclosure: If you purchase a product through this site, I may earn a commission which will help to pay for the site and the resources to support the blog.

Dealing with Guilt and Shame on the Death of a Son or Daughter

In the previous post, I wrote about how storytelling helped Tiffany Barton deal with grief and loss on the suicide death of her son, Cosmo. She talked about her letter and poem, Young Death, that Nick Cave published in his book, Faith, Hope & Carnage. She expressed gratitude that Nick’s wife, Susie Cave (née Bick), allowed him to share her “guilt and shame” in his book because it helped Tiffany “so much to know I wasn’t alone”. Tiffany also stated that in sharing her own story publicly in the Weekend Magazine, she felt “some relief from pain” and “some forgiveness”. Her experience and that of Nick reinforces the wisdom of Annie Brewster in her book, The Healing Power of Storytelling: Using Personal Narrative to Navigate Illness, Trauma and Loss.

Forgiveness: Release from guilt and shame

The latter part of Nick’s book is devoted to forgiveness and the idea of making amends. He indicated that he and Susie were “looking the wrong way at the wrong time”. He suggested that everything they do now is designed “to seek forgiveness by making amends”. Tiffany related to that statement and indicated that her public storytelling was designed to help anyone else who is also wrestling “with guilt, shame and self-loathing” as a result of the suicide death of their son or daughter. Nick devotes a whole chapter (chapter 15) of his book to the theme of “Absolution”.

Nick found recording the Skelton Tree album in Brighton particularly challenging as he had to drive each day past the cliffs were his son Arthur died and past the Church where he was buried. Even moving to Paris to finish the recordings did not assuage his sadness or sense of guilt. What did effectively provide some form of “exoneration” and inner peace was the Andrew Dominik’s documentary, One More Time with Feeling. The documentary captures the final recording sessions of Skeleton Tree by Nick and his band, The Bad Seeds, following the death of his son. It also incorporates Nick’s reflections and those of his wife, Susie. Nick explains that the documentary seemed like it did something for Arthur – “bring him back into the world”. It served as a form of release for his own sense of helplessness and guilt and enabled him to experience “a kind of peace, an internal silence and calmness”, even when driving past the cliffs where Arthur died.

Finding forgiveness in working with clay

Nick found his way to forgiveness not only through his music but also through working with clay and developing figurines “in the Staffordshire style”. He became obsessed with this project pursuing it intensely because he was totally absorbed by it and experienced flow through the deep concentration involved. Nick found the process therapeutic, permeating his dreams and consuming much of his time when he was awake. He indicated that part of the attraction of working with clay was that the process was “something very direct and elemental”. Nick found that the medium “felt liberating, also very healing”.

Sean O’Hagan, Nick’s interviewer for the Faith, Hope & Carnage book, was intrigued by Nick’s compulsion with the clay figurines and asked about the portrayal of the epic journey involved, a seeming allegory. Nick responded that the figurines were not intended to be directly about Arthur but, in the final analysis, had something to do with his death – there is a gesture of atonement involved in the final sculpture that is titled “Devil’s Forgiveness”. When asked directly whether the figurine epic is “an allegory about forgiveness”, Nick found it difficult to articulate exactly what the figurines meant. However, despite himself, the figurines, and the story they portrayed, spoke to him “directly and explicitly”. He found that the “plain and explicit nature” of the figurines related to him “the larger and unambiguous meaning of his predicament”.

Nick explained that the theme running through each of the sculptures, and the underlining story, is “the need to be forgiven” which he maintains is at the centre of his life and that of Susie and, as such, acts as a “motivating force”. Nick stated that the Faith, Hope & Carnage book, his live performances, albums (Skeleton Tree, Carnage and Ghosteen), The Red Hand Files, and his In Conversations events, are all asking for absolution – “to be released from my own personal culpability”. He also maintained that all the work that they do – he (with his creative works) and Susie (with her “ghost-like dresses”) are asking for forgiveness and saying that they are sorry for what happened to Arthur. In his own words, Nick asserts, “There is not a song or word or a stitch that is not asking for forgiveness”.

Reflection

It is not possible to fathom the depth of grief and feelings of guilt and shame experienced by a parent on the death of a son or daughter. Grief expresses itself in unique ways – for some it is totally consuming and takes over their life. For others, it seems to be a passing feeling that becomes buried before it can become an all-consuming pain. Some retreat into isolation , others “party on” while attempting to “drown their sorrows”.

The road to self-forgiveness and absolution is a long and winding road, and often a tortuous path. It is highly individualised as reflected in Nick’s figurine epic and Susie’s dress designs. Each person has to find their own way through the darkness of grief, guilt and shame. For Nick and Susie, the road to release was paved with creativity – but never dissolving the underlying sadness.

Nick mentioned that meditating enabled him to access his better, sympathetic self. In contrast, when he stopped meditating, his life tended “to slip back into chaos, low level depression and anger”. As we grow in mindfulness through meditation, we can progressively deal with our challenging feelings of grief, guilt and shame and find a way to support others through empathy and compassionate action, whatever unique form that takes. Through his pain, Nick reminds us to savour the “the precious nature of things” and the world at large.

________________________________

Image by Sergio Cerrato – Italia from Pixabay

By Ron Passfield – Copyright (Creative Commons license, Attribution–Non Commercial–No Derivatives)

Disclosure: If you purchase a product through this site, I may earn a commission which will help to pay for the site and the resources to support the blog.

Dealing with Loss and Grief

Previously I have written about the power of storytelling to manage grief. I drew on the writing of Dr. Annie Brewster and Nick Cave. Annie published her groundbreaking book, The Healing Power of Storytelling, to share her own story and that of others who have experienced loss, trauma or serious chronic illness.

In his book, Faith, Hope & Carnage, Nick demonstrates how his storytelling through his writing, documentary and his creative endeavours (songwriting, recording and performing) provided him with growth and transformation and enabled him to manage his grief with the loss of his 15 year old son, Arthur.

Even before his son’s death, Nick felt a strong need for social connection and so he created the website, Red Hand Files, to give his fans an avenue to communicate with him by asking questions of him. The resultant Red Hand Files moved from a superficial exchange re his songs and their origins to a deeply personal storytelling exchange that Nick described as an “exercise in communal vulnerability and transparency”.

Nick maintains that that through the Red Hand Files his past debilitating filters ‘have been dismantled over time” and wonder and awe have been restored in his life. He indicates that the experience of the Red Hand Files, involving mutual storytelling, has enabled him to slowly develop self-awareness and transparency by “prising” him open – moving him to progressively disclose himself and the depth of his feelings. He asserts that the process of such mutual vulnerability caused him to change as a person, songwriter and performer.

Nick’s interviewer for his book, Sean O’Hagan, comments that the letters people wrote to Nick as part of the Red Hand Files were very powerful in transforming people’s lives and served to fulfill their need for connection “by articulating their particular story for somebody else to hear”. The online files enabled people to reach out and find a way to voice their own grief. Tiffany Barton’s story is an illustration of the power of such sharing through storytelling.

Tiffany Barton’s story of loss and grief

Tiffany recently shared her story of loss and grief, and her healing interaction with Nick, in her story, “Into My Arms”, in The Weekend Australian Magazine, June 10-11 (pp.15-19). Tiffany lost her 22 year old, gifted son, Cosmo, through suicide. It is only after his death that she began to realise that Cosmo showed signs of being on the autism spectrum. For example, he had a phenomenal memory, being able to recite the 230 digits of Pi. He was also readily able to memorise Mozart, Beethoven and Haydn when learning music and performing.

Cosmo had a totally absorbing passion for the fortepiano, an instrument like a piano but based on instruments developed before 1930 (and differing from the modern piano in tone, touch and appearance). Cosmo was mesmerized by the fortepiano often talking passionately about its history, mechanics and technique and developing a unique skill in tuning the instrument. His passion led him to study the fortepiano at the Western Australia Academy of Performing Arts (WAAPA) where he hoped to eventually complete a PhD. His last performance on the fortepiano was described by Tiffany as “a stunning final concert at WAAPA”. Cosmo suffered terribly from sclerosis which led him to seek relief from a drug purchased online, that ultimately led to his death.

In her article, Tiffany describes her grief as being “like a mosquito smashed on the window of a ten-tonne truck”. She drew on Nick’s words to describe the “vastness” of grief, reducing us to “trembling clusters of atoms subsumed within grief’s awesome presence”. Tiffany became aware of Nick’s writings on grief through his Red Hand Files and was particularly moved by his “Letter to Cynthia” that he turned into a song. She wrote a poem “young death” about the night Cosmo died which helped her “purge some of the trauma and change” she carried.

Tiffany reached out to Nick by writing a letter to him and including her poem. Nick was incredibly moved by Tiffany’s courage and clarity in articulating her grief and asked her permission to publish her letter and poem in his Faith, Hope & Carnage book (which he duly did). He also asked her to record them for his audiobook.

Nick subsequently contacted Tiffany and spoke in his usual “patient” and “loving” way. Besides checking-in on her welfare, he inquired about her meditation practice. She explained that she uses meditation to communicate with Cosmo. In her discussion with Nick she spoke of Cosmo’s drug use and the impact of intergenerational trauma on her family. Tiffany explained that Nick’s ability to articulate his “grief, loss, love, art and spiritual awakening” in his book soothed her and “offered her respite from her horror”.

Reflection

Nick found that there was “freedom in grief” and indicated that the words of Kris Kristofferson song, Bobby McGee, resonated with him – “Freedom’s just another word for nothin’ left to lose”. Nick came to reconcile with the reality of the human condition and the “acute jeopardy of life”. He strongly urges us to appreciate all aspects of our life and savour “the time we have together in this world”.

It’s in facing our challenging emotions that we can break free of their hold over us and realise true freedom. Storytelling and sharing with others can open us up to the depths of our feelings and release us from the hold of our own expectations and those of others. As we grow in mindfulness through openness, curiosity and non-judgmental attention, we can deepen our self-awareness and develop the courage to share our story of loss and grief for our own healing and transformation.

________________________________

Image by Lars Barstad from Pixabay

By Ron Passfield – Copyright (Creative Commons license, Attribution–Non Commercial–No Derivatives)

Disclosure: If you purchase a product through this site, I may earn a commission which will help to pay for the site, the associated Meetup group, and the resources to support the blog.

Managing Grief through Storytelling

Dr. Annie Brewster, M.D. describes the power of storytelling for healing and recovery from illness, injury or loss in her book, The Healing Power of Storytelling: Using Personal Narrative to Navigate Illness, Trauma and Loss. She stresses the need to develop a new “narrative identity” after receiving a life-changing medical diagnosis. Annie provides an online avenue for people to share their stories of health challenges and recovery in her Health Story Collaborative which is dedicated to enabling people to heal through the therapeutic power of storytelling and a supportive social network.

In her book, Annie highlights the need to make the storytelling authentic – not just a recounting of events but also exposure of the nature and intensity of accompanying emotions. This means being open about our feelings even those such as resentment that we might be embarrassed about. It is in identifying and facing our difficult feelings that we can gain release from their hold on us. Annie stresses that it is not the medium of storytelling that matters, any form will can have a healing effect – video, audio, song, poem, letter or blog post.

Storytelling can be a powerful process for managing grief after the loss of a partner or child. Bruce Feiler stresses the need to change our “story narrative” when encountering such “lifequakes” – we have to change our linear mindset about life’s progression and allow for regression that can occur at any time. In his book, Life is in the Transitions: Mastering Change at any Age, he offers strategies, including storytelling, to reframe and reshape our lives in the event of personal loss. To assist this process of rebuilding, Bruce offers an online resource in the form of the Life Story Online Interview.

Nick Cave’s Story of grief

In his book, Faith, Hope and Carnage, developed through intimate interviews with Sean O’Hagan, Nick discusses his inner life – his creativity, challenges, loss, grief and guilt. His storytelling in the book and his music provides a catalyst for healing, growth and transformation. Nick and his wife Susie were devastated by the death of their 15 year old son, Arthur, in 2015. He described the initial grief reaction of Susie and himself as a “kind of zombification” – “a kind of morbid worshipping of an absence”.

Nick indicated that there was a real danger in such grief reflected in “a reluctance to move beyond the trauma” – because the lost person resides there and that is where meaning is initially found. He indicated that he experienced simultaneously being caught up in the “commonality of human suffering” and experiencing a deep sense of aloneness – a maddening and “extreme paradox”. Nick stressed the physicality of grief describing grief as “pounding through my body with an audible roar”, accompanied by “despair bursting through the tips of my fingers”. He also felt this “violent electricity” in the hand of his wife. He indicated that both he and Susie were “unreachable” at the time, despite the very best intentions of other people.

Nick indicated that on the advice of a friend, he undertook a form of somatic healing. He started the session lying down in a “euphoric” state. Before long, he was consumed by rage and his body bucked and vibrated from the intensity of the feeling. He observed that “you never really know what you are carrying around in you”. Bessel van der Kolk reminds us that The Body Keeps the Score in his landmark book on “the brain and the body in the transformation of trauma”.

Nick’s son died while he was recording a new album, Skeleton Tree, with his Bad Seeds band members. Nick found it extremely difficult to tour to promote the album but a friend, New Zealand-born director Andrew Dominik, offered to produce a documentary along with release of the album. The documentary, One More Time with Feeling, enabled Nick to tell his story of the trauma and grief he experienced on the death of his son. On release of the album, the Guardian described it as “a masterpiece of love and devastation” and it debuted at #1 on the Australian Aria charts.

Over time, “fragments of light” were experienced by Susie and Nick amongst the incredible darkness of grief. They were gradually able to see that people cared and that in this care and kindness lay recovery. The healing influence of social support was brought home to Nick when he undertook his Skeleton Tree Tour in January 2017. Nick indicated that he was depleted, exhausted and depressed before the tour and some of his band members were experiencing personal challenges too. Collectively, they started the tour with “trepidation” because of their lack of energy while consumed by sadness. However, Nick found that performing his songs (and story) on stage was “restorative” because of the “force field of the audience’s concern and awareness and love”. Storytelling through the power of his songs became a source of healing and a way to manage his grief.

Nick indicated that the “lifequake” of his son’s death brought home to him that suffering is the gateway to deep personal change, transition and transformation. Suffering, especially grief, forces you to redefine yourself and to seek out a new meaning for your life and adopt a new perspective on what is important.

Compassionate action through grief

Grief can energise individuals to take compassionate action, e.g. the legislative reform actions for backpackers initiated by Rosie Ayliffe on the murder of her 21 year old daughter – a story told in her book, Far From Home. Likewise, Nick was motivated to establish a website, Red Hand Files in 2018 where his fans could ask questions and seek answers from him. The website transformed from a “Q & A” type activity to what Nick describes as an “exercise in communal vulnerability and transparency” and a “life-changing, soul-enriching exercise in commonality and togetherness”. People who write to Nick via the website are able to share their stories and seek his comments and reassurance. He readily participates in this mutual story telling and story-sharing.

Grief can flow from many types of losses. It may be that a child loses their way and their personality through illicit drug use or end up in prison as a result of some criminal activity. It may be, too, that a son or daughter chooses to change gender roles. A recent post on the Red Hand Files highlights the associated sense of loss and grief of a parent when this occurs. Nick’s sensitive response to this story highlights his understanding of loss and grief. He talks of a parent’s sense of a loss of control and ,even worse, “a profound understanding that we never had control of them [our children] in the first place”. Nick suggested that the greatest sacrifice a parent can make is to “let go”. He appreciated that the parent and their offspring were able to find a “common bond” in his songs and readily agreed to the request to play O Children in Minnesota, dedicated to “Claude” as the newly named offspring.

Reflection

Storytelling can take many forms and lead to healing from grief – sharing the story adds another dimension in that it enables others to heal also. Nick talks about his songs being “a force” that “can make people better” or help them in some other way. Storytelling involves transparency, personal disclosure and risk but the returns are health, healing and recovery.

As we grow in mindfulness and self-awareness, we can embrace our new reality after a loss and restore our sense of beauty and goodness in the world.

There are many resources to help us deal with grief and trauma. One of these is Dr. Bonnie Badenoch’s online course, Trauma and the Embodied Brain.

________________________________

Image by un-perfekt from Pixabay

By Ron Passfield – Copyright (Creative Commons license, Attribution–Non Commercial–No Derivatives)

Disclosure: If you purchase a product through this site, I may earn a commission which will help to pay for the website and resources to support the blog.

Managing Life Transitions through Storytelling

Many writers and podcasters highlight the challenges involved in life transitions. Some focus on specific transitions such as aging, menopause for women, or transitions precipitated by organisational change. Their discussions frequently highlight the need to reframe specific transitions such as aging or job loss as periods of growth and creativity rather than decline – this means changing our mindset and our narrative about these transitional periods. As William and Susan Bridges point out in their book, Managing Transitions: Making the Most of Change, many people become stuck in the “endings” phase of transitions because they focus solely on what is being lost, rather than appreciating the potentiality of “new beginnings”.

Bruce Feiler, in his TED Talk©, The Secret to Mastering Life’s Transitions, contends that one of the core problems people have in managing life’s transitions is that they have a linear mindset, a perception that life is always “onwards and upwards” with a predictable forward-moving pattern – schooling, job, home purchase, marriage, and children, and career promotion. We are thus ill-prepared for “setbacks” or deviations that occur through job loss, ill-health, loss of a partner, or physical disability. Bruce, who was diagnosed with cancer when he was a new father of twin girls, suggests that when we are “side-tracked” or things go “offtrack”, we can feel as though we are “living life out of order” – living a life that is totally unexpected. In his TED Talk© and his book, Life is in the Transitions: Mastering Change at any Age, Bruce maintains that life is a series of “disruptors” and some of these are “lifequakes” that involve massive change and demand managing the transition to a new state.

The role of storytelling in managing life transitions

Bruce, along with many other writers, podcasters and public speakers, offers tips for managing life transitions that we encounter. He maintains that a key to transition is to explore our “life story” – this is the narrative we create about our own life. The solution to mastering transitions is often in our own narrative – false assumptions, self-deceits, delusions or denials (e.g. “it can’t happen to me”!). Bruce maintains that a life transition, especially a “lifequake”, is an invitation to “revisit, rewrite and retell our life story”. He offers a catalyst for this process through his Life Story Online Interview which provides an interactive form for reflection on, and recording of, our personal narrative. Bruce’s insights on life transitions have been gained through his own life experiences as well as through over 1,000 interviews with people about their life story.

Jon DeWaal, in his TED Talk©, Two Factors that Make or Break Every Messy Life Transition, stresses the need, when exploring our life story and the associated narrative, to adopt two practices to ensure that the exploration leads to a constructive outcome. Firstly, he contends that we need to be honest with ourselves – to own up to our own part in contributing to our side track or offtrack experience. This requires deep reflection, total honesty, self-awareness and avoidance of the tendency to blame others rather than look at ourselves. Associated with this is what he calls “community support” – not the gentle, warm kind that confirms our invalid self-assessment, but the kind that offers “supportive challenge” which makes us confront our weaknesses, unfounded assumptions or persistent mistakes/oversight. Jon is a learning facilitator and life transition guide at Liminal Space – a team of transition experts who can help us grow and thrive through difficult transitions. Jon is also the creator of the podcast, Life Through Transitions, drawing ideas and inspiration from interviewees who have been able to make life’s “formative transitions” into opportunities for personal transformation.

Dr. Annie Brewster, MD, and journalist Rachel Zimmerman, in their book, The Healing Power of Storytelling, focus on the personal narrative as a way to “navigate illness, trauma and loss”. Annie shares her own life experiences and transitions and, together with her co-author, offers specific guidance in the process of using storytelling for healing. She is also the founder of the Healing Story Collaborative which provides shared stories and resources through a collaborative blog – processes that are open to anyone to engage with personal storytelling for the purpose of healing.

Reflection

We are continuously controlled by the narrative in our head and this is particularly true in times of significant life transitions. We can become embroiled in negative self-stories, get stuck in the endings phase or be blind to the creative options open to us in a life transition. We need to break this destructive cycle especially when confronted with what Bruce describes as a “lifequake”.

Using reflective storytelling, meditation and other related practices enables us to grow in mindfulness and can help us to increase our self-awareness and insight, to have the courage to move beyond our “comfort zone” and to creatively explore options to manage difficult life transitions and move forward to a new personal identity and reality.

________________________________

Image by Cristhian Adame from Pixabay

By Ron Passfield – Copyright (Creative Commons license, Attribution–Non Commercial–No Derivatives)

Disclosure: If you purchase a product through this site, I may earn a commission which will help to pay for the site, the associated Meetup group, and the resources to support the blog.