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.

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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.

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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 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.

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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 listeningJennifer 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)

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.

Healing Collective Trauma

Thomas Hübl. intergenerational trauma expert, recently convened the Collective Trauma Summit 2023, designed to share ideas and healing processes “to inspire action to heal individual, ancestral and collective trauma”.  The Summit was conducted online from 26 September to October 4 and was attended by 100,00 people which reinforces how pervasive trauma is within the global community.  One of the goals of the Summit was to “create a global healing movement”.  Thomas is the author of Healing Collective Trauma: A Process for Integrating Our Intergenerational and Cultural Wounds.

Thomas and his colleagues have been conducting these trauma conferences for the past five years to raise awareness of intergenerational trauma and its impacts on individuals and communities.  Intergenerational trauma is a form of genetic inheritance of trauma experienced by descendants (typically children and grandchildren) of people who have survived catastrophic traumatic events.  The inherited trauma can be reflected in hypervigilance and a wide range of physical and psychological responses to triggers associated with the original trauma experienced by ancestors. While the person experiencing intergenerational trauma does not experience “flashbacks”, as they were not present during the initiating traumatic event, they can experience maladaptive behaviour as a result of the transmission of trauma and trauma responses by their ancestors.

When we speak of intergenerational trauma we often think of survivors of the Holocaust or the devastation of Hiroshima.  However, there are many sources of intergenerational trauma such as genocide of Native Americans and Aboriginals, institutional or familial child abuse and or neglect, domestic violence, war, colonisation, civil wars creating refugees, chronic illnesses/diseases (such as zoonotic diseases) and natural disasters (e.g., floods, wildfires, earthquakes, droughts and cyclones/hurricanes).

Developing awareness of collective trauma

Part of the focus of the Summit was to raise awareness of the “collective trauma” that resides in the global community as a result of the multiplicity of traumatic events in our world.   It means that individuals and communities are not only coping with the challenges of day-to-day living in our fast-paced world but having to deal with the residual effects of inherited trauma – the “scar tissue of collective trauma”.  One of the days of the Summit was thus devoted to “global social witnessing of world-wide uncertainty”.

Robin Alfred, in his usual articulate manner, maintained that awareness of the genetic transfer of trauma can help to reverse the ill-effects of collective trauma.  He suggested that developing resonance by listening can enable people to heal through expressing themselves – getting the inside outside and achieving congruence in their lives.  Robin contended that trauma clouds our minds so that we see ourself as a micro ecosystem, rather than as part of a global, social ecosystem.  The way forward for him is for individuals and communities to plug into the massive, self-healing biosphere.  He saw “relational resonance” creating a global healing environment as people around the world became aware of “systemic/intergenerational trauma” and explored their interconnectedness for healing.  One of his own awareness practices involves exploring the lives and world of people he does not know, e.g., speaking to undercover police about their psychological distress, isolation and identity crisis.  He epitomises the “not-knowing” mindset in pursuing understanding of people who hitherto he “has put far away” from himself.

Healing from the effects of collective trauma

Trauma can have multiple effects on a person’s life and relationships.  During the Summit people told stories of their isolation and sense of aloneness, their fear and terror, their anxiety and depression and their disempowerment.  One person described her experience of trauma as ”falling into a sinkhole”.   People participating in the Summit were courageous and vulnerable in sharing their trauma and how it was playing out for them in their individual lives.   Thomas reiterated the healing power of storytelling, especially with the support of a community of people “feeling with you and suffering also”.

Throughout the Summit, presenters and participants shared multiple healing modalities that they have employed to overcome the effects of trauma and intergenerational trauma.  These modalities included:

  • Ceremony
  • Ritual
  • Calling in spirits
  • Dance
  • Joyful movement
  • Somatic Experiencing
  • Experiences of connection

Special attention was given to the arts such as music, poetry, literature, and paintings. Laura Calderon de la Barca, psychotherapist specialising in collective trauma, reinforced the power of art (e.g., poetry) to enable people to share experiences that are extremely stressful.  In her view, art creates “an unfolding of space that needs to happen” to enable “ex-pression” (moving the inside to outside).   The sharing, in whatever form it takes, creates movement towards healing.  Laura noted that writing enabled her to bring order into her own life.  She maintained that when people get engaged with the issue of collective trauma, compassionate action is created.  She encouraged us to connect much more deeply with nature and embrace our own vulnerability through movement and dance. 

Throughout the Summit, Kim Rosen read aloud poetry that spoke to the healing process, including The Song of the Man Who has Come Through by D.H. Lawrence.  She also read a number of poems for Summit participants with the music of Jamie Sieber, electronic and acoustic cellist, playing in the background.  Kim is the author of the book, Saved by A Poem: The Transformative Power of Words. 

The way forward for healing collective trauma

Thomas stressed the desire for “global social witnessing”, and the Summit was one form of this solution.  He emphasised the need for a global movement, a form of collective endeavour, that can work towards “healing the trauma between us”.  He stressed the importance of melting the permafrost of trauma by enabling traumatised people to release their feelings, building connection through data sharing and facilitating interconnectedness through growing awareness of the community of people experiencing intergenerational and cultural trauma.

Thomas spoke of our horizontal as well as our vertical responsibility.  Horizontally, our responsibility involves moving beyond our “hyper-individualised world” to respond to the pain and experience of others.  Vertically, it entails developing awareness of our ancestors and indigenous populations and their collective trauma, as well as consciousness of younger generations and their collective anxiety.  He particularly focused on the “fragmentation” of identities and communities caused by trauma and encouraged us “to refine and deepen our capacity to relate” because it is in alive relationships that we find the energy to create, new enabling structures “that are much better for the present point of evolution”.

He encouraged us to find “different ways to experience nature and each other” so that we can develop a more integrated “healing infrastructure” for collective trauma.  He suggested that we can better tap into the “self-healing” mechanism of the body through connecting with each other and sharing our stories, power and resources.   Storytelling is not only healing for the storyteller but also the listener.

Ruby Mendenhall shared her insights from the Summit and highlighted the motivation and inspiration that the experience provided.  She especially noted how sharing in community can heal trauma and loneliness.  Ruby argued that we have to become more aware of the cost and impact of unprocessed grief, especially that flowing from adverse childhood experiences.  She maintained that a lot of people feel threatened around “gender norms or race” and that we need to take up the solutions that are already present to us but somewhat underdeveloped, such as somatic healing.  Ruby stressed the urgency of educating children about adverse childhood experiences, the impact on the body and relationships and the ways to develop resilience with the aid of community.   Ruby’s vision for black women who have experienced violence in their community is enunciated in her TEDx Talk, DREAMING and Designing Spaces of Hope in a “Hidden America”, where the mnemonic, DREAM, stands for Developing Responses to Poverty through Education And Meaning. 

Reflection

I was particularly impressed with the emphasis on storytelling as a healing modality and the power of writing to facilitate healing.  I am currently researching my own memoir that I plan to write as one way to process some of the traumatic events I have experienced in my lifetime – death of a baby brother, 18 months in an orphanage, my father as a prisoner-of-war in Changi prison for three years and  absent for the first six years of my life, a serious car accident in the family car at age 12, my father suffering PTSD and becoming an aggressive alcoholic, and my divorce at age 37.

 In the past, I have been able to process much of my trauma through living in a supportive community and growing in mindfulness through meditation, prayer and the practice of silence.  I found too, that sport and especially playing tennis helped me to deal with tension and anxiety and to focus more on the present moment.

I realised through the Summit that I have had the tendency to individualise the trauma that I have experienced as a result of the traumatic events in my life.  The Summit has made me more aware of the collective nature of trauma, especially intergenerational trauma.  I am becoming more aware that I am part of the community of adult children of alcoholic parents; the community of children whose father went to war and was imprisoned and experienced physical and psychological injury; the community of children who experienced institutional neglect; the community of people who lost a sibling while growing up; and the community of people who experienced a missing parent in their early childhood.  This realisation of different trauma-related communities that I am a part of reinforces for me the concept of “collective trauma”.

I have found it useful to connect with a community of people who share my current issue of chronic injury and who are able to openly share their experience of pain and recovery mechanisms.  This community, the Health Story Collaborative, provides story sharing opportunities and mutual support for people experiencing chronic pain, disability or illness.  It reinforces the Summit’s encouragement for mutual sharing in a supportive environment – becoming a microcosm of the global healing movement addressing collective trauma.  The fundamental message is that we are not alone when experiencing trauma and its negative impacts on our quality of life and relationships.  Together, we can muster the energy and creativity to access individual and global healing.

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Image by Big_Heart 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.

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.

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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.

Healing through Storytelling

A challenging medical diagnosis can turn your life upside down, make you question your self-image and increase feelings of isolation, particularly if it prevents you from actively engaging with your social or sporting network.  Dr. Annie Brewster M.D., who experienced these challenges when she was diagnosed with multiple sclerosis in 2001, found that medical practitioners lacked understanding and compassion for her situation – they were ill-equipped to help her deal with the internal fallout that accompanies a chronic illness diagnosis.  Annie is now Assistant Professor of Medicine at Harvard Medical School while actively engaged as a practicing physician in Boston at the Massachusetts General Hospital.

Annie, who had been quite athletic, found that her sense of identity was challenged by her diagnosis.  She discovered that by storytelling – writing her own story addressing her identity confusion, accompanying anxiety and resultant trauma – she was able to move towards recovery reframing her identity, restoring her own power in the healing process and building resilience to handle uncertainty and fear.  She recounts her story, and offers storytelling techniques with co-storyteller and journalist Rachel Zimmerman, in their book, The Healing Power of Storytelling: Using Personal Narrative to Navigate Illness, Trauma and Loss.

Healing through storytelling

Through her book, Annie helps chronic sufferers to process their challenging emotions, create their own healing story, reframe their identity narrative and reconnect with people close to them as well as the wider supportive community.  She encourages us to utilise whatever medium we are comfortable with – whether art, music audio, video or writing – to share our healing journey and accompanying story.  The techniques she and Rachel offer can help us in that process. 

Inspired by her own positive experience of healing through storytelling, Annie created the Health Story Collaborative which acts as a platform for people to share their stories of health challenges and recovery.  The Collaborative offers a medium for overcoming the isolation of chronic illness and is “patient-centered and research based”, drawing on the research providing evidence of the therapeutic power of storytelling.  The Health Story Collaborative enables people to share their stories of illness and healing and offers multiple modes for doing so.  There are videotaped Healing Stories Sessions (accessible to anyone), as well as Audio Stories (available for public consumption).  You are encouraged to share your story of illness and recovery and the options also include music, art, poems, written stories or alternative media.  Some of the more helpful stories are featured on the collaborative blog.

Storytelling about my own diagnosis of a chronic disability

I have recently started writing my memoir, inspired by Jeff Brown’s online course, Writing Your Way Home.  One of my motivations has been the opportunity provided by storytelling to work through my personal experience of trauma.  Almost simultaneously, I have received a diagnosis of spinal degeneration resulting from “wear and tear” over my 76+ years.  A contributing factor was a serious car accident when I was 12 years old, with the undiagnosed injury aggravated by playing competitive and social tennis over 65 years. 

I am now confronted by the challenge of rehabilitation and the loss of my capacity to play tennis, cutting me off from the game I love and my social tennis network (one of my few social activities).  I can relate especially to what Annie calls the need to “integrate a traumatic health event into a new and evolving identity”.  I have to reframe my identity from my self-image of a fit, competent tennis player, which has been an integral part of my life to date.

Reflection

Ash Barty has provided me with inspiration and encouragement through her own life story.  She has also made me realise again why I loved the game of tennis.  I’ve been reading Ash’s memoir, My Dream Time – A Memoir of Tennis and Teamwork, which could alternatively be called Developing Resilience through Adversity (as she documents her multiple injuries, mental health challenges and recovery strategies).  Ash, the smiling assassin, who achieved World Number 1 WTA singles ranking for 114 weeks, shares openly her battle with negative self-messages, including the inexplicable negative self-talk about “not being good enough”.  

I can relate deeply to what Ash describes as the pleasure she developed in playing tennis – enjoying the game for its own sake and finding “love in the marriage of movement and timing and speed and strength and guile and nerve” (the willingness “to go for your shots”).  I found sheer enjoyment in my competence at tennis and my ability, even in my seventies, to surprise my opponents with unpredictable shots (such as a backhand half volley drop shot, a shot down the line or a half volley backhand lob).  I would often mentally record the competent shots that I played and still to this day can replay some of them mentally as if on videotape.  I undertook this process of recall and replay of my best tennis shots to build my sense of self-efficacy in playing tennis.

It is interesting that Ash talks about her slice backhand as her competitive advantage.  In her words, the slice backhand produces “ an unpredictable low bounce” and is created by hitting the ball “with enough angle and speed to generate a fade”.   Ash, through her slice, changed women’s tennis game at the elite level.  In the mid 1970’s, I used to employ a slice backhand as my main attacking shot when playing competitive tennis … and I would follow it in to the net to complete an attacking volley as my opponent would have to hit the ball up to clear the net.  However, over time while playing social tennis, after my competitive tennis days were over, I stopped using my slice backhand – for unknown reasons at the time.  On reflection, I discovered that what had got in the way of my using this particular shot was a form of cognitive blind spot – I had unconsciously begun to view it as “not a real shot”.  Ash’s resurrection of the slice in women’s tennis made me realise that I had unwittingly discontinued a shot that gave me a competitive advantage.

Ash at one stage in her book talks about “acceptance” – everyone is imperfect and “we’re all unique, all fallible and all with our own foibles”.  It is the nature of being human that we are prone to making mistakes and subject to life-changing mental and physical challenges.  We need to acknowledge the fragility of the human condition, accept what we can’t control, and act on what we can change for the better.  Mindfulness can help us to develop resilience in personally challenging times.

As I grow in mindfulness through reflection, meditation, writing and storytelling, I hope to develop a new narrative about my evolving identity, grow in self-awareness, and strengthen my courage to undertake the necessary, ongoing rehabilitation.  Life’s challenges can “make or break us” – mindfulness can help us to remain grounded, develop resilience and explore creative options.

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Image by Chen 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.