Tag: Health Story Collaborative

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:

  1. 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. 
  2. 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.
  3. 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.

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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:

  1. 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.
  2. 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.
  3. 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.

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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.

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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.

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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.

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.

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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.

The Healing Power of Social Support

Social support can take the form of having friends, family or other people who can be a source of support in difficult times, such as chronic illness, death of a loved one or ongoing disability.  They can provide emotional, companionship or resource support and enhance our self-image while offering different perspectives on what we are encountering.

Social support can be provided through a formal social network where people with common interests come together to achieve specific outcomes such as fitness, charitable work or a hobby (as with the Australian Men’s Shed).  Alternatively, they can be informal where a number of people come together on a regular basis to share a coffee and have a chat.

The benefits of social support

Julia Baird, author of Bright Shining: How Grace Changes Everything, highlights the mental health benefits of social support and points to the research that shows the “poor mental health” that results from isolation and loneliness.  She refers to a homeless support group organised by St. Vincent de Paul Society that she joined and noted that there was “no pretence”, people “just being who they are”.  The healing power of this transparency and normality was evident in the homeless participants developing a positive self-image and contributing from their perspective and reality.

Social support is one of the three components for sustainable recovery from trauma, along with appreciating the complex nature of trauma and its impacts and adopting a holistic approach.  Research and clinical practice have demonstrated that social support builds resilience in trauma sufferers – they realise they are not alone, are encouraged to pursue their healing process, are reinforced in their healing efforts and learn vicariously from others who are experiencing difficult emotions and challenging situations.   The resultant sense of connectedness contributes to positive mental health.

The GROW organisation over many years has demonstrated that mutual social support has contributed to recovery from many forms of mental illness for hundreds of people (as documented in testimonial stories by participants).  The peer-to-peer support process facilitated by a nominated leader within the “lived experience” group, promotes personal development and ongoing recovery – a process that may take a number of years.

Reflection

Social support helps participants to develop a sense of being cared for as well as feeling that they can seek assistance from others in understanding and managing their challenging situation.  People gain a strong sense of belonging and connectedness through sharing their personal challenges, their success strategies and their progress towards healing.  They grow in mindfulness as they share their stories and write about their insights, gaining increased self-awareness and heightened self-esteem.

Creative Meetups, provided by the Health Story Collaborative, is a powerful social support system in that it combines the healing power of social support with the healing power of storytelling.  Participants feel fully supported by others engaged in compassionate listening or sharing their stories of challenging situations resulting from chronic illness, disability or their carer role.  The following poem expresses the sense of social support that can be gained through the Creative Meetups:

Social Support

When we share our stories of personal challenges, we realise that we are not alone.
We draw strength from others experiencing and managing more difficult circumstances.
We sense that we belong and feel connected to something outside of ourselves and our pain.
We can be ourselves, free of pretence, unencumbered by the need to be “better than”.
We build trust, savour our relationships and look forward to the next encounter.
There is something magical and disarming about the process that leads to changing perspectives and healing.

____________________________________________

Image by John Hain 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.

Paternal Forgiveness – A Reflective Poem

Since I started participating in the Creative Meetups organised by the Health Story Collaborative I have been writing poems. It’s as if there are feelings inside me that need to get out.  It reminds me of my PhD supervisor who told me at one stage of my extended procrastination, “You have a doctorate inside you, unless you let it out, it will undermine whatever you are doing.”  Once I wrote the PhD, it released a whole new world of opportunity.

Over time, our disposition to forgive and our capacity to offer forgiveness to others and ourself will develop almost invisibly if we grow in mindfulness through appropriate practices, such as forgiveness meditations.  The following poem grew out of my mindfulness practices and Meetup reflections:

Paternal Forgiveness

I didn’t forgive you while you were alive.
I didn’t even forgive myself.
Now I don’t know how to say sorry to someone who has passed.

You served in the army during World War 2 before I was born.
You spent four years in Changi and worked on the Burma Railway.
Shortly after your army discharge, you reenlisted.

When I was four, you left to work in Sydney and Woomera.
And served 18 months with the Occupation Forces in Japan.
There you were an “enemy stranger” in a foreign land.

In your absence, Mum was seriously ill following the birth of Michael.
You returned for two weeks to take Mum and my two brothers to Brisbane.
While baby Michael spent time with your sister before getting ill himself.

My younger sister and I were separated and left with different relatives in Melbourne.
Three month old Michael was eventually placed in a Founding Home.
When Mum returned a month later to collect the three of us, you told her that Michael had died while she was in transit.

I spent 18 months in an orphanage at the age of four while you were away.
Those were the months of my imprisonment and harsh treatment, shared by my younger sister.
Though we were separated from each other by the Institution.

Mum was only allowed by the Institution to visit us monthly.
It was only then that I saw my brothers and my sister, despite her being in the same Orphanage.
I felt isolated and alone.

When you returned from Japan, you became an aggressive alcoholic.
As a young child, I would freeze and dissociate when your rage flared.
As I got older, I would take flight by riding my push bike into the night as fast as I could.

I didn’t understand PTSD – no one did at that time.
I had not been where you had been or seen what you saw.
I didn’t see the triggered images that tormented you.

The war, the explosion, hospitalisation, capture and prison life.
You suffered the loss of mates killed in action or dying from cruelty or malnutrition while you were in Changi or working on the Burma railway.
You experienced unimaginable horrors.

I understand now that alcohol was your way to drown your pain and sorrows.
To block out the horrific images.
I forgive you and forgive myself for my harsh judgments – I didn’t understand.

It was easy to take sides when you were drunk and wasting our income.
While Mum slaved away at the local Woolies to keep us afloat.
And vented her anger and frustration at night.

As an adult, I had to take Mum away from your violence for her survival.
I was fearful at the time that you would try to find us.
As we took shelter in the small rooms at the back of a General Store.

The separation proved to be a godsend.
You both improved your lives.
With new partners eventually and a healthier way of life.

You even gave up alcohol and walked an hour every day.
On Sundays you took Mum to Church.
But we were not able to reconnect.

You had been a professional boxer, winning 20 of 22 fights.
You won trophies for tennis and athletics.
You became Player Coach of a Reserve Grade AFL team in Brisbane.

I am truly grateful that I inherited your genes.
The fighting spirit, resilience, determination and fast reflexes.
All of which have helped me in my tennis and my work and life.

I am sorry that I did not know what you were going through.
That I saw myself, instead of you, as the victim.
That I did not acknowledge your unbearable pain and unbelievable courage and tenacity.

____________________________________________

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 and the resources to support the blog.

Creative Meetups: Action Learning for Health and Healing

Creative Meetups are provided by the Health Story Collaborative (HSC) to enable participants to reflect, connect and gain support from other people who are also living with chronic illness or disability or are carers.  The free Meetups, currently facilitated by Jennifer Harris on the Zoom platform, provide a stimulus for writing “to access and release emotions, personal stories and creative spirits”.  They form an avenue for healing through the mechanism of narrative therapy.

Alice Morgan, author of What Is Narrative Therapy?, maintains that narrative therapy can take many forms.  For instance, she suggests that it can involve “particular ways of talking with people about their lives and the problems they are experiencing”.  In essence, it involves people sharing their stories orally and/or in writing to gain insight into the meanings they ascribe to events, experiences and current situations (such as a physical or mental health condition).  Jodi Clarke points out that we carry multiple self-stories including those related to “self-esteem, abilities, relationships and work.”  She maintains that the process of “putting your narrative together” (however, this is created) enables an individual “to find their voice” as they explore  their life experiences and the meanings they attribute to them.

What is action learning?

Action learning can be described in simple terms as a cycle – planning, taking action and reflecting on the outcomes (intended and unintended).  It is used worldwide in public, private and not-for profit organisations and communities to create positive change and empower people to be the best they can be.  It can be undertaken by an individual by themselves (as I have done with my tennis playing over the years) or, more often, as part of a group or “action learning set”.

Creative Meetups and Action Learning

Creative Meetups and action learning have a core assumption in common.  Alice Morgan expressed this well when she maintained that narrative therapy assumes that “people have many skills, competencies, beliefs, values, commitments and abilities” to resolve their own challenging situations – an assumption that underpins the process of Creative Meetups.  This is also a fundamental assumption of action learning (AL).  

Reg Revans, the “Father of Action Learning”, charged with improving the mining industry in the UK, got mining managers together to solve their “here and now problems” in the mines.    He also got nurses in Intensive Care Units together to work on their challenging situations.  In an action learning context, participants are often described as “personal scientists”.  Some academics in universities, tied to the concept of universities as the sole repository of “expert knowledge”, had great difficulty accepting this core assumption and would actively oppose the uptake of action learning – it challenged their firmly held beliefs about knowledge creation and dissemination.

Creative Meetups and action learning have a number of other elements in common and, in the final analysis, both seek to create positive change in a situation (either individual or collective).  Some of the shared elements are as follows:

  1. Peer support – a fundamental principle is to treat each other as peers – with no acknowledged hierarchical difference.  There is a recognition that we are “all in the same boat” – each facing challenging situations.  Reg described this element as “comrades in adversity”; more recently, people have termed it “comrades in opportunity”.  In essence, it involves providing mutual support irrespective of our work role, status, social position or experience level.
  2. Collaboration – participants work together towards a common goal (e.g. health and healing or team improvement) and willingly share stores, resources, and insights for mutual benefit.  People are unstinting in their sharing – often recommending or loaning books, highlighting helpful websites or identifying relevant expert people.
  3. Don’t know mind – participants adopt a “don’t know mind”, not presuming to know and understand another person’s situation.  Reg suggests that if you think you understand something fully, you are not only going to get yourself into trouble but other people as well.   Adopting a don’t know mind – not jumping to conclusions or interrupting another’s story with your own (erroneously assuming they are same or similar) – enables a person to tell their story in an unfettered way, opening up the path to healing and recovery. 
  4. Honesty – the conscious exploration of what it means to be honest with oneself (owning up) and with others.  This opens the way for improvement and change.  The process of writing in Creative Meetups helps participants to identify false self-stories and unearth truer and richer stories that open up new avenues for their lives and their relationships. Action learning, too, enables the development of honesty.  Reg, for example, recounts an action learning program involving industrial executives in Belgium who, after 18 months of action learning, identified “What is an honest man and what do I need to become one?” (they were all men) as the most significant question they wished they had asked at the start of the program.  He maintained that the pathway to learning and change involves “admitting what you do not know”.  Reg also maintained that if you are going to do “something significant about something imperative”, you will come up against how you define yourself and your role.
  5. Reflection – reflection is assisted by writing and sharing.  The more we reflect, the more it becomes a way of life.  Frequent reflection-on-action can result in the ability to reflect-in-action.  Reg suggests that reflection is best done in a group because when we reflect alone we can tend to reinforce our existing assumptions and maintain our blindspots.  He argues for diversity in the reflective group – diversity of culture, nationality, profession and orientation (business/not-for-profit/community).  The Creative Meetups provide a rich diversity in terms of location (participants are from different countries and cultures) and health/caring situation.   Participants can gain insight gratuitously when others share their reflections from their different perspectives.
  6. Questioning – the willingness and ability to ask “fresh question” to open upinsight into a challenging situation.  Reg describes this as “questioning insight”.  This approach involves “supportive challenge” – challenging assumptions to enable a person to be the best they can be.  Alice Morgan highlights the role of questioning in narrative therapy because we can often develop negative self-stories.  Both action learning and Creative Meetups (narrative therapy) cultivate curiosity.
  7. Action taking – action learning involves learning through action undertaken with others where possible.  Creative Meetups promote writing as taking action to become open to  the healing power of storytelling.   The writing can take any form, e.g. prose, poetry, dot points.  Action is also reflected in the changes in behaviour undertaken by participants as a result of insights gained through writing and sharing.
  8. Facilitation – to design and manage the process of sharing.  In Creative Meetups, the facilitator provides stimulus material (e.g., a story, music or poem) to enable participants to write and share.  In action learning, the facilitator guides the process of planning, acting, reflecting and sharing.  In both situations, the facilitator is not a teacher.  Their role is to create an environment that promotes safety, trust, openness and sharing – their metaprocess goal is to develop a learning community.   

Creative Meetups, in promoting writing and reflection, are helping participants to grow in mindfulness which is described by MARC (UCLA) as “paying attention to present moment experiences with openness, curiosity and a willingness to be with what is”.   Both action learning and mindfulness contribute to positive mental health because they increase self-awareness and heighten a sense of agency (belief in the capacity to have some control over our inner and outer environment).  In cultivating mindfulness, both approaches help people to develop resilience, compassion and creativity. 

Reflection

I initially joined the Meetups with a view to writing my stories in prose but have found that the stimulus provided by the discussions and my recent reading of Kim Rosen’s book,  Saved by a Poem: The Transformative Power of Words, has led me to write several poems about my health story and the process of the Meetups.  Kim’s identification of the transformative elements of a poem continues to provide a pathway for my poetic expression.   I used her elements to analyse a poem I had written called For the Love of Tennis that enabled me to express my gratitude for being able to continue to play tennis despite a diagnosis of “multiple-level spinal degeneration”.

Following a recent Meetup, I unearthed my feelings about my chronic condition of food sensitivity/allergy resulting from Long Covid-induced Mast Cell Activation Syndrome.   I was surprised about the intensity of my feelings of frustration and alienation that I had not previously given voice to.   The poem, The Inflammatory Thread in My Life, provided a creative outlet and release for emotions I had kept “under wraps” and not expressed to anyone, including myself.

In a previous post, I shared a poem, Compassionate Listening, that I wrote following a Creative Meetup where the stimulus input included an excerpt from Joni Mitchell’s performance of Both Sides Now at the 2024 Grammy Awards.  To me the poem reflects the stance of participants of the Creative Meetup in being able to engage in deep listening, provide active support of the storyteller and reflect back not only the feelings expressed but also the intensity of those feelings. 

Compassionate listening strongly reflects the ethos of HSC where Healing Story Principals (such as Micheal Bischoff) sought to support people “to tell and listen to stories in ways that are healing, connected and empowering”.  The support and connection underpinning Creative Meetups and action learning promote health and healing.

Reflecting on the process of Creative Meetups and my long-standing experience with action learning in multiple contexts, I was inspired to write the following poem:

Where is “There”?

When you share your innermost secrets

and I say, “I’ve been there!”,

where is “there”?

It’s not where you have been

with your unique experience and perception.

I’m not inside you looking out,

I’m outside you looking in.

It’s like the glimpse of the Bay

that I get from my back deck.

It’s not the Bay!

It’s only a tiny window

on a complex ecosystem.

____________________________________________

Image by Xavier Lavin Pino 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.

Joni Mitchell: An Inspiration for People with Chronic Illness

Legendary singer-songwriter Joni Mitchell has been an inspiration to millions of people and particularly those who suffer from chronic illness or experience long-term disability.  You only have to look at comments on YouTube about her Blue Album to see how Joni has impacted the lives of so many people – people suffering from loss, grief, pain and stress and recalling the joyful moments and the feelings of hope when they heard her sing.   She has the ability to positively touch the lives of people of all ages, as evidenced by her triumphant performance of Both Sides Now at the 2024 Grammy Awards.  The recognition of her stellar career was reflected in her 10th Grammy Award that night and her earlier (2002) Recording Academy’s Lifetime Achievement Award.

Joni’s health challenges and courage

The story of Joni’s health challenges and her positive approach to overcoming them is a source of inspiration in itself.  She had to learn to walk again after being diagnosed with polio in 1952 when she was 9 years old.  She suffered the painful and crippling effects of polio for 40 years, initially overcoming the disease in 1995, only to then experience “post-polio syndrome”.  If Joni had accepted the mantra of many medical practitioners about aging, she could have taken their advice “to lie down and die”, accepting one of the myths of aging.  Instead, she chose to seek alternative medicine options and to fight on.

On a number of occasions, Joni spoke about her experience of Morgellons disease which she described in 2010 as a “weird, incurable disease”.   The Mayo Clinic describes the disease as creating “a belief that parasites or fibers are emerging from the skin” and involving  an “intense itching and sores”.  The Centre for Disease Control and Prevention in their 2012 report stated that the “skin lesions and/or disturbing skin sensations” along with “multi-system complaints” can result in a “significantly reduced health-related quality of life”.   Health problems reported by respondents to the research included chronic fatigue, overall poor health and cognitive deficits.   

Joni herself reported in 2014 that her immune system was severely taxed by the Morgellons disease which restricted her ability to fly and made touring impossible.  Her response to this debilitating disease was to say that she was not regretful about her condition but was enjoying the creative process away from singing – “painting, revisiting her music, prepping a four-act ballet or an upcoming collection of stories”.   This clearly reflects her indomitable spirit and her ability to focus on what she did have, not what she had lost.

Her resilience was again severely tested in 2015 when she suffered a brain aneurysm.   In an interview with Cameron Crowe in 2020, Joni stated that the aneurysm took more away from her than her polio – it “took away my speech and my ability to walk”.   Her ability to talk returned relatively quickly, but even at the time of this interview she still struggled to walk.  Doctors had advised her that she would “never walk again” but she stated categorically that she would walk again.  She indicated at the time, “I’m a fighter” (with Irish blood) and told herself, “Here I go again, another battle”.   

The aneurysm appeared to rob Joni of her singing voice, but in 2018 when some musical friends, including Elton John, turned up at her house for what had been famously called a “Joni Jam”, everyone was surprised and delighted when Joni joined in the singing with her “warm and familiar voice”.   Joni indicated that she was moved by the spirit of the group and stated that “I forgave myself for my lack of talent” (having “lost her soprano voice” and only being able to sing “a low alto”).  

Joni continued her fight against her chronic illnesses and, in 2023, made a triumphant return to concert singing in a three-hour Joni Jam organised by American singer-songwriter Brandi Carlile and involving friends such as Annie Lennox and Sarah McLachlan.   Joni’s life journey can be revisited through BBC Radio 4 Legend’s Podcast – seven episodes of the Joni Mitchell story.   Her journey into singing and songwriting can be reviewed through the Joni Jams Podcast which “goes album by album through Joni Mitchell’s entire discography”.

Reflection

During the most recent Creative Meetup, participants engaged in healing storytelling (in writing and orally) partly stimulated by Joni Mitchell’s song, Both Sides Now.  Joni’s emphasis on “I really don’t know clouds [music, love, life] at all” resonated with participants who shared their experiences of unintentional exclusion by others.

For some, the metaphors that we commonly used can exclude others whose experience differs, e.g., for people who are extremely “light sensitive”, metaphors such as “silver lining” or “let the bright side in” can contribute to their sense of isolation and exclusion.  For people who experience food sensitivity or allergies, metaphors such as “sweet as a mango” can be alienating.  For others, established traditions or practices such as enforced prayers as a child or Australia Day Celebrations can trigger memories of terror and/or loss.  As one participant noted, “Unless you are in my shoes, you don’t really know”.

The Creative Meetup hosted by the Health Story Collaborative provided ample evidence of the healing power of storytelling and the energy and insight generated by compassionate listening.  Jennifer Harris, the facilitator of the Meetup session on Zoom, introduced Emily Dickinson’s poem, “Hope” is the thing with feathers, and this led to a participant’s comment that “hope emerges from dark places” – sometimes, when there appears to be “no hope”.  As all participants in the HSC Meetup are people who are living with illness or disability or are carers, they were able to draw comfort, support and inspiration from Joni Mitchell’s struggle with ill-health.

My reflection on our Meetup is captured in the following Compassionate Listening poem that I wrote after our meeting:

Compassionate Listening

What you see is not what I see.

What you hear is not what I hear.

Your world is not my world.

Your feelings are your own.

I can’t know your reality.

I can only listen with compassion

… and openness to what is different for you.

I can learn to adopt a “don’t know” mindset.

As we grow in mindfulness through compassionate listening, reflection and sharing our story, we can deepen our self-awareness, cultivate openness and build resilience.

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Image by xiSerge 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.

The Transformative Power of Poetry

I have just been reading Kim Rosen’s brilliant book, Saved by a Poem: The Transformative Power of Words.  I found it enlightening, stimulating and inspirational – opening up new areas for personal exploration.  Kim is a world-renowned poet, activist, an award-winning “spoken-word artist, and a teacher of self-inquiry.  She brings a rare openness, insight and compassion to her writing and numerous individual and community engagements.  Kim collaborated with cellist Jami Seber to create Feast of Losses, a unique merging of music and poetry.  The collaborative endeavour reflects the ambiguity of everyday life in today’s world – life and death, grief and joy, loss and gratitude.

Saved by a poem

In her book, Kim describes situations in her own life and that of significant other people where a poem has proved to be a source of insight, healing, support, and rescue from depression and/or suicide ideation.  At the age of 15, Kim experienced an awakening from what she describes as her insular life characterised by “distance, intelligence, and control”.  The poem, “somewhere I have never travelled, gladly beyond” by E.E.Cummings, broke through her protective shell – a remarkable unfolding occurred through the “waves of sensation, emotion, and imagery” she experienced when reading the poem aloud.

Kim explains that the healing from poetry occurred for her not from writing poems but from “taking a poem deeply” into her heart and life and speaking it aloud.  She contends that the language of poetry is not a purely intellectual exercise but involves a holistic approach – engaging the whole person, their thoughts, emotions, spirit and body.  Poetry enables personal integration, reinforcing the mind-body connection, exposing our inner reality and its embodiment in our physical sensations.  It creates a sense of being vulnerable before a deeply profound truth that is difficult to deny.

Developing a relationship with a poem

Kim explains that sometimes we can seek out a poem for strength and support in a time of crisis – at other times a poem can seek us out.  We may initially resist a poem’s message but eventually if we persist, especially in reading it aloud, it will penetrate our defences.  She suggests that to take a poem into our life requires allowing the words to ignite our true essence – achieving an alignment of our “thoughts, words, and deeds with our heart’s wisdom and longing”.  

Kim tells the story of when she lost all her investments and savings in a scam that left her unable to pay rent.  A friend offered her somewhere to stay and together they continuously read aloud the poem Kindness, created by Naomi Shihab Nye.  The poem seemed to find each of them independently before they shared lodging for a while.  Kim recounts how, after memorising the poem and repeatedly saying it aloud, she came to understand that the kindness referred to in the poem is not about kindness to others but the kindness others offer you when you have lost everything.  The opening words of the poem resonated deeply with her – Before you know what kindness is, you must lose things.  Kim experienced an incredible outpouring of kindness from others when she lost everything – offers of accommodation or financial support and many gifts (even a year’s supply of lattes).

Kim suggests that choosing to learn a poem by heart can be influenced by curiosity, desire for pleasure, love or a personal need arising from a crisis.    She also talks of the challenge from what she calls “the yoga of poetry”.  We might be attracted initially to a poem but its inherent challenge, intellectually and/or emotionally, may be off-putting.  The focal poem requires a degree of stretch, moving beyond our comfort zone or opening ourselves to new insights about ourself and/or others.  This yoga-like stretch can be achieved progressively by persisting with the poem, reading it aloud, committing it to memory and, where possible, sharing it with others.

Opening up to poetry

Kim describes the habit she developed of recording poems in a diary, both those she has written and poems by others.  She describes the resultant record as an Autobiography in Poems. She explains how each group of poems addressed a need at a particular point in her life, e.g. to challenge her “idealized image” of herself; facing chaotic feelings; and finding herself and her life purpose. 

Kim argues that we can access the transformative power of poetry by writing or reading poetry, joining a poetry writing group, reading poems aloud by ourself or in public presentations, reading poems with a group and/or recording poems that appeal to us in a diary (or on digital voice media).  She encourages us to explore poetry as a way of opening ourselves to the richness of our inner life, as well as our inhibitions.

Reflection

In her book, Kim describes how poetry saved Maya Angelou, after she had been raped by her mother’s boyfriend (at the age of seven) who was jailed and subsequently murdered.  Maya, feeling guilty for exposing her attacker and contributing to his death, became mute for six years.  During her silence, she memorised poems that appealed to her, including 60 Shakespearean sonnets.  Her school teacher (when Maya was 12 years of age) was aware that Maya was mute and loved poetry, so she challenged her by saying, “in order to love poetry, you must speak it”.  This led to Maya reciting a sonnet from Shakespeare – her first spoken words in six years. Maya went on to become a  world-famous author, poet and activist.  She also pioneered a unique autobiographical style in her book, I Know Why the Caged Bird Sings.

Kim observes that poems “seemed to know me better than I knew myself” and often “reflected my deepest feelings more intimately than words alone can touch” – because what touches us through a poem Is “between and beyond” the actual words.  She maintains that poems can give voice to supressed feelings and longings that may be hidden from ourselves.  I found this personally when I wrote a poem called The Inflammatory Thread in My life after hearing William Stafford’s poem, The Way It Is, provided as a stimulus piece for our writer’s meetup group with the Health Story Collaborative.  Until I wrote the poem, I had not realised the extent of my frustration with my allergies and food sensitivities that were impacting what I could eat and drink and negatively affecting my relationships.   

Writing, reading, speaking or sharing poetry can help us to grow in mindfulness because these activities can develop deep insight, expose our inner landscape and strengthen our resolve and courage, along with inspiring us to emulate the compassionate action of others.

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Image by cromaconceptovisual 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.

Mast Cell Activation Syndrome and Covid-19: The Invisible Link

There has been a lot written lately about Long Covid and its differential impacts on individual’s health.  More recently research has highlighted a connection between Covid-19 and Mast Cell Activation Syndrome.  It is important at the outset to reinforce the need to consult a medical practitioner for treatment of individual health symptoms.  We can too easily make assumptions about what is occurring for us if we go it alone.   For example, I assumed that my numb feet were the result of peripheral neuropathy caused by Long Covid.  When I consulted my medical practitioner, I  discovered, through the X-Ray that he requested, that my assumption was wrong – the actual problem was multi-level spinal degeneration.   However, it is important to consult practitioners who are open to multiple explanations of chronic symptoms, such as those induced by allergies and food sensitivities.  Often, this may involve a medical practitioner who has a holistic perspective and/or is  qualified in functional medicine.

I recently participated in a Creative Meetup conducted by Health Story Collaborative.  During the meeting, Diane Kane responded to a discussion by a number of participants who were experiencing Long Covid symptoms such as loss of sense of smell, brain fog, and allergies.  When I mentioned my ongoing battle with food sensitivities and allergies, Diane shared some information about Mast Cell Activation Syndrome (MCAS).  She explained that her website is a research hub for MCAS.  On the website, Diane shares her own extended patient story as well as research resources including a video presentation on MCAS by Dr. Larence B. Alfin, author of Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity.

What is Mast Cell Activation Syndrome?

Dr. Kelly McCann in a video podcast interview explains that mast cells are a key part of our normal immune system.  Their role is to watch for invaders that would cause injury to our bodies.  They reside everywhere in our bodies from our head to our feet, and typically live in areas of our body that are at our interface with the environment, e.g. our skin, our blood vessels and our nerves.

Mast cells are responsible for delivering chemical messengers, called “mediators”, such as cytokine and histamine, that produce an inflammatory response to the perceived invader, e.g. a virus, environmental chemicals, mold, or the flu.  Kelly points out that research has shown that mast cells play a major role in the “cytokine storm” that causes an inflammatory response to Covid-19.  If the “foreign invader” is overcome (e.g. we recover from Covid or the flu), “everything quiets back down again” and ‘inflammation goes away”.

However, for some people mast cells become over-active, “hyper-vigilant” and hyper-responsive” – a condition identified as Mast Cell Activation Syndrome (MCAS).  What happens then is that our body “misperceives things”, some of which are actually good for us, e.g. healthy foods.  Hence, we can end up with food sensitivities and allergies (to things like smells, chemicals and some foods).  Kelly makes the point that because of the pervasiveness of mast cells in our body, “anything in our body could present as a mass cell activation symptom”, e.g. brain fog.

Kelly explains that Mast Cell Activation Syndrome is “a spectrum” – ranging from mild to extreme.  A key feature of MACS is that over time, without intervention, there will be an “escalation in the inflammatory or allergic symptoms” of an individual.  The inflammatory response can be exacerbated by what Kelly calls “hits”, e.g. a virus, sustained exposure to mould, or a tick bite (leading to Lyme Disease).  For example, the progression of mast cell activation syndrome could be signalled by the worsening of food sensitivities for an individual.    

Diane’s personal health story

Diane created her website as a means of education and advocacy about the independent science research being conducted on mast cell activation syndrome.  Her own story is really about the extreme end of the spectrum of MCAS and is one of resilience, persistence and hope – a great source of inspiration for anyone experiencing MCAS symptoms.  Diane’s multi-dimensional health problems persisted over 46 years.  Despite visiting 80 consulting doctors and undergoing “extensive evaluations” at 15 major hospitals and suffering multiple anaphylaxis attacks over 20 years, she was not diagnosed with MCAS until 2017 when she visited Dr. Ali Rezale of the Cedars-Sinai Medical Center. 

Dr. Rezale and Dr. Alfin are working with Diane to improve her health overall.  In the meantime, Diane is working on writing a book titled, The MCAS and Covid-19 Theory: A Multidimensional Epigenetic Phenomenon.   As an experienced medical researcher and author who suffered long-term symptoms of MCAS, she is well-qualified to document her story and the growing body of relevant scientific research.  Diane provides draft copies of early chapters of her book on her advocacy website. 

My health story

I have experienced multiple “hits” as described by Dr. Kelly McCann.  Having had asthma as a child, I am prone to respiratory problems and allergic reactions.  While I overcame the asthma by the time I was 12 years old, since then I have contracted pneumonia three times, RSV (Respiratory Syncytial Virus) three times and Covid-19 in 2021.   In 2017, I experienced major eczema covering my whole body, following 8-weeks of intensive antibiotics to heal an infected leg (resulting from an operation to remove a melanoma).   Since then I have experienced continuous food sensitivities and allergy which are increasing in breadth and depth to the point that there are very limited things I can eat or drink without negative side effects. 

Dr. Kelly McCann explains that there are two things going on with MCAS – a trigger(s) and reaction(s).  Both need to be addressed.  In terms of food triggers, I can relate to Dr. Kelly McCann’s comment that she was gluten-free, dairy-free and unable to eat a long list of foods.  As Kelly suggests in her presentation, I have been undertaking an elimination process trying to identify specific foods (especially those high in histamine or salicylates) that cause aggravation of my symptoms so that I can remove them from my diet. 

In regard to reactions, Kelly argues that there is a need to dampen the hyperactivity of the immune response.  My naturopath, Dr. Mark Shoring, agrees with a tentative diagnosis of MCAS in my case, and recommended initially a course in Chinese skullcap (Scutellaria baicalensis), a herb identified by Mt Sinai Health System in New York as being “used in traditional Chinese medicine to treat allergies, infections, inflammation, cancer, and headaches”.  This treatment, along with Turmeric, is designed to dampen down my hyperactive immune response. So, my somatic strategies, at the moment, include identifying and eliminating aggravating foods and drinks while simultaneously calming the inflammatory response of my immune system.

Mind-body connection and healing practices

Kelly maintains that she experiences the influence of the mind-body connection everyday in her clinic when working with patients.   She points out that the impact of mind-body connections is developed through our early family and developmental experiences.  Unfortunately, we are often prone to misperceive these experiences or develop false beliefs that lead to emotional problems such as low self-esteem and emotional dysregulation.  She argues that we have to envisage the health challenge confronting people with MCAS in terms of a three-legged stool – Mast Cell Activation, Limbic System Activation (our emotional centre) and Vagus Nerve Dysfunction (the main nerves of the parasympathetic nervous system).

Kelly mentions a number of practices that can help retrain the limbic system to get our “mental/emotional loops” and habituated behaviour under control, e.g. Dynamic Neural Retraining System, the Gupta Program and Cathleen King’s Primal Trust Program.

Vagus Nerve Dysfunction can lead to people with MCAS becoming stuck in fight/flight/freeze behaviour which can impede healing.  Kelly maintains that the approach required here is stimulation of the vagus nerve to help people to get “back into parasympathetic rest and digest”.  She suggests approaches to achieve restoration of balance, e.g. breathing exercises, meditation and devices such as EmWave, HeartMath and Rezzimax.  Kelly mentioned that she uses mind-body techniques in her clinical practice when the person she is treating is receptive to these approaches.

Reflection

I think it is important to remember that MCAS impacts each individual differently.  The impacts are influenced by our biology and the number and severity of what Kelly calls “hits”.   There are so many confounding variables involved that self-diagnosis is likely to mislead us.  However, this should not stop us from being proactive, e.g. identifying and reducing or eliminating our triggers.  Actively seeking to grow in mindfulness can help us to stimulate the vagus nerve, activate our relaxation response and overcome negative thoughts.

Reading about Diane’s experience prompted me to revisit my naturopath and discuss his diagnosis of my food sensitivity and allergy experience.  He explained that his recommended treatment approach was based on the assumption that I was experiencing MCAS.

During one of my Creative Meetups, also attended by Diane, we listened to a reading of William Stafford’s poem, The Way It Is.  Listening to this poem and the subsequent discussion in the Meetup group prompted me to write a poem about my food sensitivities and allergy:

The Inflammatory Thread in My Life

There are many things I can’t eat
fruit, gluten, dairy and red meat.
I feel left out that I can’t share
even with delicious family fare.
I crave something sweet
but the cost is too steep.
Hives and rashes make me really itchy
legs and feet are shamefully icky.
Wine is off the table, not that I am unable
it’s the swollen ankle, that renders me unstable.
The endless cycle of elimination
to discover the source of inflammation.
It’s harder to share a meal with my wife
what I’ve done for forty years of my life.
Covid-19 has a long arm
it’s still doing me harm.
Almond croissants are my passion
a loss of consciousness my reaction.
Butter was a food sensitivity
It’s now a dangerous allergy.
Food and drink are tainted rewards
a mindset change to move forward.
It’s a long journey with a clear destination
It takes patience, perseverance and dedication.

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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.

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Image by Ingo Jakubke from Pixabay

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

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