Category: Mental Health

Epic Pursuits Before and During Retirement

In a previous post I explored happiness and fulfillment in retirement drawing on the work of Bec Wilson, creator of the Epic Retirement Flagship Course and the author of the book, How to have an Epic Retirement.  In that post, I shared some of Bec’s suggestions concerning “Epic Pursuits” that could enable us to achieve an “engaged, curious and happy life”.  In her Workbook accompanying the course, she suggests that epic pursuits are “things you really enjoy doing, and that you want to deepen your knowledge of and get better at”- a source of joy, learning and contentment.  The Workbook helps us explore our achievements, passions, purpose, interests, and values as a basis for deciding what epic activities to pursue in retirement.

I retired as a Professor of Management in 2017 and ceased management consulting work in 2024, following the serious illness of my consulting colleague who was my co-facilitator for the previous 16 years – we had run hundreds of workshops together.  In reflecting on my own life story to date, I began to identify what epic pursuits I have undertaken both before and during my retirement:

  1. Research and writing
  2. Tennis and pickleball
  3. Social networking
  4. Travel overseas

Research and Writing

I have developed the art of writing over many years and followed the exhortation of one of my professors: “if you want to learn to write – write, write, write”.  So my writing has included theses, articles, book chapters, conference papers, blogs, e-books and training courses.   Hence my non-fiction writing has included the following:

  • Master’s research project and doctoral thesis (100,000 words) – doctorate awarded in 1996
  • Multiple published book chapters and articles on action earning and action research published in academic journals (one of my co-authored academic articles won an Award for Excellence from The Learning Organisation: An International Journal)
  • Co-author/editor of two books on action learning and action research
  • Chief editor and occasional author for a journal on action learning and action research
  • 4 blogs covering internet/social media marketing
  • Current blog, grow mindfulness.com, which has 791 posts, 977 moderated comments and a total word count in excess of 550,000 words
  • Created 15 poems incorporated in my mindfulness blog
  • Broad based articles published on Squidoo (over 100 before it was terminated), HubPages, ArticleDirectory.com and Wizzley.com, a writer’s community (also co-creator of this social media site with colleagues in Germany and the US)
  • Creator of a 6-month, online course on Social Media Marketing (comprising 24 PDFs)
  • Supervisor of Master’s and Doctoral students including recommended content and format edits; examiner of Doctoral thesis for 12 Universities, including 3 overseas (Britain, South Africa and New Zealand)
  • Developed short e-books on Affiliate Marketing and The Inner Game of Tennis.

Recently I also published an Amazon Kindle e-book, Writing for Wellness: A Pathway for Chronic Illness. 

My research and writing goals for my retirement are:
  • Complete 5 more Kindle e-books drawing on my Grow Mindfulness blog and my other publications
  • Research and write 2 X 1,000+ word articles per month for my Grow Mindfulness blog which covers topics such as mindfulness practices, chronic illness, leadership, management, health and happiness

Tennis and Pickleball

I have played tennis for more than 65 years but owing to a number of chronic conditions I have not participated in my weekly social tennis since February 2025.  Tennis was very much a part of my life since I was 9 years old.  I played at primary and secondary school, in the seminary in Melbourne, competitively at A grade and Pennant levels and socially after this.  Tennis gave me a sense of competence, motivation for maintaining my fitness and a source of relaxation.  I have written a poem about my gratitude for experiencing the joy of tennis.

However, I am currently experiencing the following chronic illnesses that impact my ability to play tennis (even socially at night):

  • arthritis in the middle finger of my right hand (I am right-handed)
  • osteopathy affecting my hips and other parts of my body
  • multi-level spinal degeneration (likely impacted by my MCAS chronic condition)
  • exercise asthma.

I decided to explore pickleball as an alternative to tennis and found that I am able to play this sport to an intermediate level.  I recently wrote about my joy in playing this game in a blog post and a poem titled, For the Love of Pickleball.  I have avoided competitive pickleball sessions and focused on social games to protect my fragile body. 

I am thoroughly enjoying the social aspects of pickleball and experimenting with new shots and ways to improve each time I play – a great source of learning! One clear advantage is that I can build on the skills and court craft I acquired through my many years of playing tennis – more than 10,000 sets of tennis.  I have played tennis on multiple surfaces – grass, concrete, bitumen, artificial grass, ant bed, clay and flexipave.  I have enjoyed playing social tennis locally as well as overseas in Auckland, Boroughbridge (Yorkshire, UK), Port Moresby and Lake Annecy (France).

My pickleball and exercise goals:
  • Continue to play social pickleball weekly
  • Undertake daily exercises provided by an exercise physiologist for my chronic conditions
  • Resume regular Tai Chi activity (both as a mindfulness practice and source of health benefits).

Social networking

I joined a social network for writers-with chronic-illness about two years ago.  The group, Creative Meetups, has a Zoom meeting each month which is currently facilitated by Jennifer Crystal, author of One Tick Stopped the Clock and a writing-to-heal coach.  The online sessions involve a stimulus piece provided by Jennifer along with time to write to the relevant theme and an opportunity to share our writing whatever form that takes.  I have been very inspired by this social connection and the creative writing of others, some of whom have very serious chronic illnesses.

The inspiration I have received from this group sharing has enabled me to write a series of poems about the stimulus topics and incorporate them in a relevant blog post.  This has proven to be an excellent stimulus to my own creative writing.  On a health front, I find that I really enjoy writing and that my pulse rate drops when I am in the process of creating a post or poem – I tend to “be-in-the-zone”.

My social networking goals are:
  • Continue to participate in the monthly, online meetings of the writers-with-chronic-illness
  • Use these meetings as a continuous source of inspiration
  • Continue to create poems stimulated by the shared stories and writing of the Creative Meetup group
  • Explore volunteering particularly visiting hospital-bound war veterans.

Travel Overseas

When I reflect on my achievements in this area, both domestically and internationally, I can feel a strong sense of gratitude for the opportunities I have had and also for the health and fitness that enabled me to undertake the relevant travel.  I have focused on my overseas travel in this post.

The best way to recall and record this travel is to categorise the travel by year:

  • 1994 – my wife and I and our two boys (aged 3 and 6) travelled to England for the World Congress on Action learning and Action Research (I was President, at the time, of the ALARA Association that sponsored and organised the Congress).  We were able to stay in Yorkshire and Bath (the location of the Congress).  We also spent a week at Lake Annecy in Northern France  with our Yorkshire-based in-laws.
  • 1995 – I travelled to England by myself to undertake research as part of a validation process for my doctoral thesis.  This research trip enabled me to visit action learning/action research experts in London, Lancaster, Nottingham, Bristol, and Brighton.  At the time, my adult son was on a working holiday at a restaurant in the Lakes District and one of my daughters was working as a child carer in a castle in Lockerbie, Scotland.  We were then able to travel together by train to Edinburgh, through snow-covered terrain.
  • 1997 – I travelled to Cartagena, Colombia, via Singapore, Los Angelos, Miami, and Bogota (a 36 hour trip).  I was attending a World Congress on action learning and action research as President of the ALARA Association (joint sponsor).  I had participated as a member of the international Planning Committee and attended the Congress as Convenor of the Organisational Development Stream and a member of the Expert Panel session.  We were overwhelmed by the 1,800 participants from 61 countries who turned up for the event (despite only 500 people registering in advance).
  • 1998 – three trips to Singapore to run workshops on action learning in Port Moresby for the International Management Centers (UK).
  • 2014 – my wife and I travelled in November/December via Hong Kong to Frankfurt, Bingen (Germany,  where we spent a week in a friend’s unit), Paris, Venice, Florence, and Rome.   We were able to spend 7 nights in each location and spent New Year’s Day in Rome (-4 Degrees Centigrade, turning a fountain to ice). 
  • 2017/2018 – my wife and I travelled in December/January via Hong Kong to Milan, Lake Como, Turin, Santa Margherita, Bologna, and Venice (New Year’s Day there).

My wife and I had planned to travel to Paris and Northern Italy again for my 80th birthday (2026).  However, I have reluctantly acknowledged that I have reached a fragile stage in relation to overseas travel, given my osteoporosis and multi-level spinal degeneration.  I can no longer sit or lie down for extended periods, even in business class plane travel. This means that I will have to travel “closer to home”.  This does not preclude my wife from travelling overseas, either by herself or with a companion.  I will have to concentrate on domestic travel and use virtual travel to enable me to gratuitously experience travelling overseas.

My travel goals are:
  • Expand my digital photo album to incorporate photos and videos of my previous overseas travel (to enable virtual travel)
  • Visit overseas sites virtually via the drone photography that is readily available on the Internet
  • Write a blog post recording domestic travel undertaken before and during retirement
  • Develop domestic travel goals for the next five years.

Reflection

Bec identifies 5 stages of retirement planning – “fragility” being one of them.  However, this may be a stage in relation to one or more epic pursuits – it may not extend to all our activities.  For example, I am still able to play pickleball but I cannot travel overseas.  I think one of the challenges is to learn to adapt retirement planning progressively as we age and not let fragility in one area contaminate our thinking about other areas of activity or epic pursuits.

The core challenge of aging and retirement is to make the most of our “spare time” in retirement, the surplus in our life.  As Bec notes, if we do not actively plan our retirement, we can be overwhelmed by boredom and negatively impact our longevity.  It is much better to plan for happiness and fulfillment in retirement.  If we grow in mindfulness through a range of mindfulness practices we can enhance our physical and mental health, develop constructive routines and find creative ways to grow and contribute.

By recalling and recording my epic pursuits before and during retirement, I have become more aware of the opportunities I have had in my life and feel a strong sense of gratitude for what I have been able to achieve.

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Image by Ahmet Yüksek 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.

Aging and Retirement Planning

Bec Wilson, creator of the Epic Retirement Flagship Course, reminds us that the concept of retirement has changed in recent times.  “Retirement” used to mean leaving your job and work because of your age.  It was often age-related with organisations setting mandatory age limits for full-time employment.  Bec notes that a more modern concept of retirement involves choice – choosing to live off income from investments, superannuation and pensions while undertaking personal exertion in relation to work that you choose to do (whether paid or voluntary).  There is also the choice not to work at all but to pursue your “bucket list”, including travel options or explore hobbies or other recreational/sporting activities.  Bec explores these retirement choices extensively in her book, How to have an Epic Retirement.

Barriers to retirement planning

People are often fearful of retirement planning because they are concerned that they will “run out of money”.  They may be anxious that stopping work will leave them without a purpose and structure to their life.  Many people define themselves by their work role – e.g. a teacher, social worker, lawyer, accountant, or librarian – they are concerned that they will lose their identity if they stop working.  Others are concerned that they  will not be able to enjoy their retirement because they will be afraid to spend money.

One of the biggest barriers to retirement planning is attitudes to aging.  The impact of negative beliefs about aging is pervasive – reaching into  every aspect of our life.  Research shows that negative aging beliefs can have a damaging effect on us, both physically and mentally.  It can severely restrict our perception of options open to us, including retirement planning.  “Ageism” portrayed in the media reinforces negative portrayal of the aging process, highlighting the elements that “decline” without counteracting that with the positive benefits of aging.

In contrast to such reinforced negativity, positive beliefs about aging have numerous benefits including longevity; enhanced knowledge, understanding and wisdom; improved capacity to handle stress; heightened creativity; and improved physical health.  Positive beliefs about aging also free us up to explore the many options available to us in planning our retirement. 

We can develop positive beliefs about aging by increasing our awareness of the pervasive presence of ageism while exploring positive images of aging portrayed in memoirs and stories of exemplars and by interacting with aged people in our family and social network.  With this kind of ammunition we can more readily challenge the assumptions behind negative stereotypes of aging.  We can also begin to explore options for ourselves as we begin to consciously plan for retirement.

One member of the community-based The Epic Retirement Club, Sam Sang,  maintains that we each have “retirement superpowers” – unlimited energy, instant skill mastery, endless travel.  Other members empathise the freedoms that they and other retired people enjoy.  This community sharing of real retirement experiences  contrasts sharply with the pervasive perception that retired people do not have the capacity to contribute to society, are unable to enjoy life and experience severe limitations.

Planning for retirement

Bec is motivated by the desire to help people better understand the choices they have by learning about what supports are available to assist with retirement planning and, in the process, to “figure our what’s really important to you.”.  To this end, she not only provides her Epic Retirement book and Flagship Course but also a 150 page, practical Workbook to “guide you through each module” of the Course.  Bec suggest that you undertake the Course and complete the Workbook with your partner or an “accountability buddy” who  could be a friend.

The Course and Workbook are structured around what Bec calls the Six Pillars of retirement – time, financial confidence, health, happiness and fulfillment and travel.  For each of these pillars, she provides a series of questions and points for discussion, along with quizzes and the space to record our own answers.  For example. Bec provides a basis for calculating longevity to highlight that we often have much more time in retirement than we envisaged based on old data – nowadays, people are looking at 30 or more years in retirement given increased longevity owing to medical breakthroughs, new health and exercise regimes and extensive lifestyle advice.

To assist us to develop financial confidence, she provides the means to calculate whether we have the financial resources to support a comfortable or modest retirement or whether we will be dependent on a Government pension.  A number of exercises in the workbook support this latter source of income.  Bec helps us to complete both the asset test and the income test to enable us to see whether or not we qualify for the Australian Government pension and related financial and health concessions.  For those who are on the borderline of the relevant pension cut-offs, she assists us with suggestions of how we might qualify for the pension in the future.

In relation to health, Bec offers suggestions for ways to improve health outcomes and longevity, including diet, exercise, building a daily routine, managing health risk factors and ensuring you undertake preventative testing at the recommended intervals.  For those of us who experience chronic inflammation, she strongly argues for the need to reduce inflammation by identifying and managing triggers (e.g. foods, environmental toxins and harmful stress).

Her discussion and questions concerning health and happiness are comprehensive and covers aspects such as transitioning to retirement, research about happiness, creating meaning, maintaining and developing relationships, epic pursuits and goals.

In relation to travel, Bec shares the idea that there are potentially three phases of retirement travel: (1) active and independent travel, (2) less active, slower pace travel with the possibility of assisted travel, and (3) travel closer to home (avoiding the rigours of international travel and seeking more comfort).

Reflection

My wife and I are completing the Epic Retirement Course and Workbook together.  We find that this approach is a catalyst for a number of important discussions, including what we will do in retirement; where we want to travel to (we have already been overseas a number of times); how we can create a comfortable retirement; what financial planning we need; what are our assets and overall financial position; how much we will need to live on; where we will like to live in retirement; how we provide for our children; and how to structure our wills.

Bec identifies 5 key stages of retirement: (1) prime time, (2) adjustment, (3) epic retirement, (4) ageing, and (5) frailty.  Even though my wife and I are at different stages of retirement (owing to a 10 year age gap), we are able to use the Epic Retirement Course and Workbook to work towards an agreed, shared retirement future.

Mindfulness practices can help us to develop positive beliefs about aging and contribute to our longevity (we have been married for forty years).  As we grow in mindfulness, we can broaden our retirement options, enhance our creativity and develop new skills relationships and travel options.

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Image by 🌸♡💙♡🌸 Julita 🌸♡💙♡🌸 from Pixabay

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

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

Managing A Flare-Up from Fish Poisoning

Flare-ups are a common occurrence with Mast Cell Activation Syndrome (MCAS) – triggers (such as food or chemical intolerance) can exacerbate existing symptoms of immune hyperactivity or be a catalyst for new symptoms to occur.  Managing these flare-ups is a constant challenge for someone like me who has MCAS, as their occurrence is often unpredictable and, sometimes, confounding.

Creating a story from a single object or event

At our October Creative Meetup, an online group for writers-with-chronic-illness, we were introduced to the idea of writing a story from an object.  Our facilitator, Jennifer Crystal, showed a video of Billy Collins reading his poem, Lanyard, as an example of how this is done.

The idea of focusing on an event or object is also illustrated by Melissa Febos in her book, The Dry Season, a memoir about her conscious choice of twelve months of celibacy after a tempestuous time of cyclical relationships that proved to be harmful to her health and self-esteem.  In particular, she focused on her “maelstrom”, a two-year toxic relationship with another woman that proved to be controlling and destructive and was the catalyst for her chosen period of celibacy. 

Throughout her memoir, Melissa revisits this event (story object) to highlight its impact and to serve as a benchmark against which to evaluate other potential relationships.  Her period of celibacy was designed to provide sufficient distance from the maelstrom to facilitate self-insight, overcome her fear, find herself again (having suffered from “the-need-to-please”) and to achieve peace with her experience of the maelstrom.

Creating my story of a recent flare-up

At our Creative Meetup, we were encouraged to write our own story using one or both of the following prompts:

  1. Make a list of five prompts you associate with your story. Pick one and write about it (poetry or prose) OR
  2. Write something (poetry or prose) that includes all five objects.

I chose to address the second prompt and drafted a poem around the five objects I identified that were associated with my recent flare-up:

fish, hives, rash, poisoning, pain

The poem that I have included at the end of this post is the outcome of my writing and reflection as well as the group sharing and discussion that occurred during the Meetup session.  Participants shared their writing and their vulnerability in stunning prose and poetry (given they had only 20 minutes to write their story). 

A flare-up from fish poisoning

My story began with having Red Emperor, a wild-caught fish, for dinner. I am allergic to soy so I avoid farmed fish that are typically fed on soy products.  I thought it would be safe to eat the Red Emperor as it is not farmed but wild caught in deep waters such as those off the coast in Northern Australia.

What I experienced, however, is an immediate reaction to the Red Emperor (unlike previously where I had eaten it without negative consequences).  My body reacted strongly this time – resulting in a bright red rash on both upper arms, accompanied by itchy hives and a burning sensation on my affected skin as well as night sweating and headache. 

This led me to do personal research on “fish allergy”.  What I established is that there are two major forms of fish poisoning:

  • ciguatera poisoning
  • scombroid, also known as histamine poisoning.

My first thought was that I had experienced histamine poisoning given histamine intolerance stemming from my MCAS chronic illness.  However, on further research, I established that the reaction is more likely to be caused by ciguatera poisoning.  The symptoms of each form of fish poisoning are similar but the causes differ substantially; a distinctive symptom of ciguatera poisoning is “extreme itchiness” which was my experience. 

Histamine poisoning is caused by bacteria developing on dead fish that have been stored ineffectively (e.g. not deep frozen or stored on ice).  Ciguatera poisoning, in contrast, results from the food chain which commences with small fish eating marine toxin produced by algae in reefs and being consumed by larger reef fish which are then consumed by humans.

Ciguatera poisoning is more common in fish that live in warm waters and “spend some or most of their time in reefs”.  Red Emperor is explicitly implicated in carrying this form of fish poisoning.  Freezing, cooking or cleaning do not destroy the ciguatera toxins.  The presence of ciguatera toxins are not visually detectable, nor can allergy to the toxin be detected by allergy testing.  

Recovery from ciguatera poisoning

A disturbing fact is that ciguatera poisoning symptoms can recur without further exposure to a poisoning source.  The likelihood of symptom recurrence is increased by drinking alcohol.   Recommendations for recovery include avoiding fish for at least 6 months and abstaining from alcohol for 3 months after eating the toxic fish.

A detailed article on ciguatera poisoning in the National Library of Medicine maintains that relapses in symptoms “may be triggered by consuming alcohol, nuts, seeds, fish, chicken, and eggs”.  The authors advise that “patients should be counselled to avoid fish, caffeine, alcohol, and nuts within 6 months of poisoning”.

The itch and burning sensation from ciguatera poisoning made it difficult to sleep despite the use of Dexeryl – “an emollient cream that reduces irritation, itching and scratching”.  Eventually, I had to resort to using Eleuphrat, a type of Cortisone cream, to reduce the itch and pain and enable me to sleep.

I have had a series of flare-ups since the initial contamination after eating Red Emperor.  The first was following a glass of wine; the second after eating a salmon and avocado sushi roll.  Others involve accidental consumption of egg or chicken.  Research has shown that farmed salmon, typically used in sushi, can lead to ciguatera poisoning because of toxins in the fish food. 

One of the problems associated with fish poisoning is that you can tolerate a particular type of fish at one point and yet at a later time react severely to eating it, sometimes with fatal consequences.  For example, a newspaper report recounted the case of a father-to-be who collapsed after eating barramundi at a restaurant and died five days later in hospital.  He had experienced tingling in his mouth a few years before when eating barramundi.  A Victorian health website identifies barramundi as one of the more common causes of fish allergy.

Reflection

It is easy to jump to a conclusion re the cause of symptoms without undertaking the necessary research and/or seeking medical advice.  The problem of accurate diagnosis of symptoms is compounded by cross-contamination and the commonality of symptoms (e.g. hives and rash) among various food allergies. 

For example, consumption of coffee can cause a rash and itchy hives resulting from histamine poisoning caused by impurities in coffee such as  “molds, mycotoxins, pesticide residues, yeasts, and other biogenic amines”.  Purity Coffee seeks to provide quality coffee beans and a coffee process to avoid these issues and enable people with MCAS and histamine intolerance to have their regular coffee.

We can be more mindful of the factors influencing our symptoms if we take time to research and reflect on our findings and related experiences.  As we grow in mindfulness, we can become more self-aware and conscious of what is impacting our body and develop creative ways of achieving recovery from ill-health.

I developed the following poem In reflecting on my experience with ciguatera poisoning:

The Flare-Up

Flaring up like a campfire flame,
fighting feverishly a toxic invader.

Redness spreading across swollen ridges,
a painful path of itch and burning sensations.

Awash in a sea of marine toxins,
overwhelmed by a challenged immune system.

Elimination diet a testing time,
complex interactions of food and drink.

Seeking answers through research and inquiry,
wild caught fish traced as the trigger.

Unanswered questions,
uncertain future,
unpredictable outcomes.

Where is my anchor?

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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.  This article reflects my personal patient experience – MCAS and related diseases affect each individual differently.  I frequently share my research findings with my medical practitioner and this informs my treatment.

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Image by Thomas 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.

Finding Stability and Predictability in Times of Uncertainty

In the previous blog post, I discussed a UCLA talk by Bhanu Joy Harrison on the topic of Unpredictability and Adapting.  Bahnu emphasised our constant mind-body search for stability and predictability despite continuously encountering uncertainty in our personal lives as well as the world at large. She maintained that we are constantly seeking “an island of coherence in a sea of chaos”. 

The reference to “islands of coherence” is based on the work of Nobel prize winning chemist, Ilya Prigogine, who stated that when systems move away from equilibrium and create chaos, “small islands of coherence” can “shift the entire system to a higher order”.  When applied to our inner world, this concept relates to our capacity through interconnectedness to develop stability and predictability that, in turn, provides us with “strength, calm and groundedness”.

Bhanu maintained in her UCLA podcast that mindfulness practices are a way for us to create our own “islands of coherence”.   On the InsightTimer website, she offers a range of guided meditations on topics such as slowing down, getting unstuck and managing anxiety.  During her podcast, she also  provided a guided meditation on supporting ourselves by creating “islands of coherence”.

Guided meditation – providing support and groundedness

Throughout the guided meditation, Bhanu encouraged us to trust our support. As a starting point, this trusting involved letting our chair support us by enabling our weight to sink into the chair. While being conscious of this support, we can let our mind focus on the power of gravity to hold our posture in place (not allowing us to fly into the air but to stay grounded on the earth).  We can sense the “grounding effect of gravity” on our body.

While being conscious of this groundedness, we can notice what is happening in our body – a slowing of our breathing, loosening of our muscles and bodily tension.  The aim is to drop from our brain into our bodies like dropping an anchor “into the bottom of a lake”.

If we want to contain ourselves bodily we can give ourselves a hug – placing our left hand on our right shoulder and then reversing the process.  Alternatively, we can “feel the solid edges of our body” by squeezing along the length of our arms.  I often found that joining the fingers of both hands together can have this grounding effect as I feel the sensations pulsing through them.

Bhanu reminded us  that “our body holds so much”, including the visceral imprint of trauma.  She suggested that one way to calm the body and mind is to hold our head with two hands – one holding the base of the skull while the other holds the forehead.   Again, she encouraged us to notice any change in bodily sensations, our emotions and our mental activity. 

Bhanu then suggested that we focus on our legs because our legs help us to carry a lot of weight embedded in our torso from the “intensity of life”.  Our body, especially our torso, is activated by stress and being aware of this activation through our legs can “help spread out that activation”.  In particular, exercises such as pressing our feet into the ground (together or alternating) and squeezing down our legs with our hands, can serve to reduce the activation in our torso by spreading the load.  Squeezing down our arms can have a similar positive effect.

Working with the predictable – breathing

Bhanu suggests that when we are overwhelmed by the unpredictable, in whatever form it takes, we can focus on the “predictable” things in our life.  A key element of this strategy is to focus on our breath because “our body knows how to breathe”, no matter what is going on in our life.  Mindful breathing is an important aspect of mindfulness practice and there are many ways to achieve this re-focusing.  James Nestor, for example, promotes intentional breathing as a path to improved health and longevity.

We can breathe with the earth, engage in lower-belly breathing, or rest in our breathing.  Richard Wolf argues that we can develop deep listening through focusing on our breathing which he calls “the sound of your life”.  He maintains that we can listen to our breath just like a musician listens to music.  He provides a number of ways of doing this including listening to the sound of our breath (the inhalation and exhalation), resting in the silence between breaths and breathing in time.

Mast Cell 360 offers breathing as one of the strategies to de-activate the body’s over-active nervous response to perceived “invaders” (food allergies and, in particular, high histamine foods).  For example, in the masterclass, Mast Cell Nervous System Reboot, the course creator, Beth O’Hara provides examples of  “alternate nostril breathing” as one of the strategies she employed to redress the histamine activation effects of Mast Cell Activation Syndrome (MCAS).  “Resonance breathing” also forms part of her holistic approach to MCAS and histamine intolerance.

Working with the predictable – alternative strategies

In addition to breathing practices, Bhanu offers other strategies that we can easily employ on a day-to-day basis to focus on the predictable and work to de-activate our bodies from the stress effects of the “unpredictable”.  These practices include:

  • focusing on the seasons of the year which are predicable, especially winter and summer whose arrival is often celebrated with special rituals
  • consciously viewing the sunrise and sunset occurring each day
  • observing the emergence of flowers in Spring, the fall of leaves in Autumn (Fall), the shortening of the day in winter and their lengthening in summer
  • noticing the sun rising early in summer and later in winter
  • thinking about the way you are greeted by your children and your dog when you return from work each day
  • observing the millions of stars that appear each night.

Bhanu suggests that these grounding practices can help us to find peace and calm in times of turmoil – they can become our “island of coherence” in the advent of chaos.

Reflection

Chronic illness is often unpredictable and can prove to be complex and difficult to resolve.  The uncertainty about its development and resolution and the lack of help from the medical profession can exacerbate the situation.  Chronic illness too is disruptive, impacting quality of life and self-identity.

The mindfulness practices proposed by Bhanu can help to manage chronic illness.  As we grow in mindfulness, we can better regulate our emotions, draw inspiration from people who have mastered their debilitating situation, and find creative ways to address our own limitations and constraints.

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Image by Kanenori 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.

Proactive Acceptance and Personal Research of Chronic Illness

I was very recently diagnosed with osteoporosis – an addition to my multiple chronic illnesses.  This diagnosis comes on top of existing chronic medical conditions including multilevel degenerative disc disease, exercise asthma, skin cancers, arthritis in my middle finger and MCAS (Mast Cell Activation Syndrome) with Histamine Intolerance (leading to multiple allergies/food sensitivities).  The existence of multiple chronic diseases prompted my medical practitioner to develop a Medicare-supplemented Chronic Disease Management Plan.

What I have learned from trying to manage my other chronic health conditions is that the way forward begins with acceptance of what is.  This is not a passive position but a proactive one entailing:

  • acknowledging the limitations imposed by your chronic illness
  • exploring the boundaries of the limitations (not accepting imagined restrictions or ones suggested by  a medical professional based on a limited perspective on your illness)
  • seeking expert and social support, e.g. the International Osteoporosis Foundation
  • redefining personal identity where that seems advisable
  • expressing gratitude for what you do have and can do
  • undertaking recommended testing
  • educating yourself about your medical condition – it’s precursors, progression and prognosis
  • researching healing modalities.

Why do personal research?

The reality is that medical practitioners, no matter how dedicated they are to your healing, are limited by time, training and discipline approach.   Very few are able to adopt a holistic perspective.  Given that chronic illness is typically complex, having a multisystem impact compounded by interdependency and interaction, a holistic perspective is often necessary to establish effective healing modalities.

Often medical practitioners, who are frequently time-poor because of the patient demand of their practice, adopt a symptomatic approach that just touches the surface of an illness and does not address the root causes.

I have experienced these limitations of medical practitioners and found that I had to supplement their perspective and approach with my own research and be an advocate for my own health improvement.  This personal research does not supplant the advice of a medical practitioner but supplements it, enabling you to ask, “What if…?”

My personal research in relation to osteoporosis

Following the personal research principle, I began to question why I was experiencing  osteoporosis when I had been exceeding the recommended intake of calcium for many years, mainly through Ostelin (Calcium and Vitamin D) and almond milk.  The question then arose as to how well my body was absorbing the calcium. 

In following this line of questioning, I learnt the following:

  • MCAS negatively impacts bone strength.  Dr. Lawrence B. Afrin (2013), international expert in MCAS, reports on research that shows that “premature osteopenia/osteoporosis is frequently found in mast cell disease patients”.  More recent research by David Harris (2024) shows that MCAS has a “direct role in bone metabolism” through the chemicals, such as histamine, released in the inflammatory response of MCAS.  He states that “this overactivation can lead to an imbalance in bone remodeling, favoring bone loss and increasing the risk of osteoporosis”.  So the focus on repair should include reducing histamine release through food control and anti-histamine medication/supplements.
  • My medical practitioner has given me a referral to an exercise physiologist to develop a weights exercise program which research shows helps to develop bone density and strength.  However, while this is important to undertake, it still addresses the symptom (loss of bone density), not the cause (potentially MCAS acting negatively on bone density).  To their credit, my medical practitioner had organised a bone density scan to identify the root cause of my degenerative disc disease and loss of height.  The scan established the existence of osteoporosis.
  • Exercise is an important part of the healing process for osteoporosis.  So my transition from playing tennis to playing pickleball, necessitated by arthritis of the middle finger on my right hand, is an important means to maintain an exercise regime and one that is less exacting but still providing weight-bearing activity essential for developing bone density and strength. There is also research that shows that people with osteoporosis should “avoid exercises with extreme spine curving forward, such as toe touches and sit-ups”.
  • I have previously written about the multiple benefits of Tai Chi and how it can improve your tennis game, as well as that of other racquet sports such as pickleball.  Tai Chi has been shown to improve bone health, being a gentle, weight bearing exercise.  This works in two major ways, (1) improving bone density and (2) improving balance and coordination (to prevent falls and related broken bones).  There are resources readily available to help people manage osteoporosis through Tai Chi such as Tai Chi for Osteoporosis (DVD by Dr. Paul Lam) and Tai Chi for Older People.

Further revelations from my personal research and experience

As I continued to research my chronic medical conditions, I discovered the following things that can impact my health:

Exercise anaphylaxis

Skin prick testing revealed that I have wheat allergy (among many other food sensitivities).  However, no medical practitioner mentioned to me that this could lead to what is known as “exercise anaphylaxis”.  Apparently, according to the Mayo Clinic, if you have a wheat allergy and you exercise “within a few hours after eating wheat” you can experience exercise-induced anaphylaxis. 

A holistic approach to MCAS incorporating nervous system regulation

Most practitioners who accept the existence of MCAS adopt a biomedical model which focuses solely on the body and the use of medications and supplements as the only healing modality.  Beth O’Hara, creator of Mast Cell 360, determined through her research and extensive work with patients that this approach adopted by most medical practitioners failed to address the nervous system, a key component of MCAS disease. Beth stated that righting the nervous system represented 50% of the necessary healing modality.  She was able to demonstrate through actual results that a healing modality for MCAS must include rewiring of three interrelated systems:

  • Parasympathetic re-balancing
  • Vagal nerve signalling
  • Limbic system re-regulation

To this end, Beth designed a masterclass titled Mast Cell Nervous System Reboot.  I have purchased this course and have been working my way through the science explaining the nature of MCAS and the underpinnings of Beth’s healing protocol. I am looking forward to undertaking the practices she incorporates in the course to calm the nervous system.   Her Mast Cell 360 website has multiple resources, including health coaches, for people experiencing MCAS and histamine intolerance.

Allergic arthritis

One of the things I discovered independently was the existence of allergic arthritis.  I had been wondering why the joint in my right middle finger was swollen whenever I experienced other allergic reactions.  Research has shown that allergies /food sensitivities, creating an inflammatory response, can aggravate existing arthritis and cause osteoarthritis in other parts of the body.

Low histamine foods – apples

Apples have been identified as a low histamine food.  I have found that I can readily tolerate Pink Lady apples without an allergic response.  However, I have also found that Red Delicious apples cause a serious reflux reaction, leading to a sensation of choking. 

High histamine foods – avocados

Avocados are identified as a high histamine food and can impact people who have a histamine intolerance.  However, research shows that avocados that are firm and not too ripe are lower in histamine than those that are soft and over-ripe.   This revelation was important for me as avocados have multiple health benefits and are a key part of my diet and are necessary to help me maintain my weight (which is a challenge given my restricted diet because of allergies/food sensitivities).


Reflection

The winter of my osteoporosis is yet to come as it is early days.  However proactive acceptance and personal research can enable me to maintain a summer perspective in relation to my chronic illnesses.  My research has highlighted things that I need to avoid, opened up new lines of inquiry, highlighted potential healing approaches and strengthened my ability to be an advocate for my own health with medical practitioners.

The more we grow in mindfulness through Tai Chi and other mindfulness practices such as mindful eating and mindful walking, the better we will be able to develop proactive acceptance, engage in personal research and find creative solutions to our chronic illness.

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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.  This article reflects my personal patient experience – MCAS and related diseases affect each individual differently.  I frequently share my research findings with my medical practitioner and this informs my treatment.

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Image by Yana Vakulina from Pixabay

By Ron Passfield- Copyright (Creative Commons license, Attribution-Non-Commercial -No Derivatives.

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

Managing the Seasons of Chronic Illness – Summer

In a previous post,  I discussed the season of winter in the progress of our chronic illness.  There I explored “wintering” as a way to move beyond the darkness, despondency, despair and debilitation that accompanies the experience of winter in the progression of our chronic illness.  Wintering, in this context, involves “letting the light in” through rest, renewal and regeneration.  In my accompanying poem about wintering, I explored what it meant for me during a particular period of darkness.

In our August Creative Meetup, Jennifer Crystal read an extract from her book, One Tick Stopped the Clock, as a stimulus piece for writing in our group of writers-with-chronic-illness.  The extract focused on the hope associated with the arrival of summer following a period of winter.  In the extract, Jennifer recounts her desperation in the face of her totally debilitating Lyme Disease.  At the time, she had a catheter feeding intravenous antibiotics through her arm and chest cavity to her heart.  She was grossly sleep-deprived, suffered migraines , battled a health insurance company for her reimbursement entitlements, and experienced brain fog.

Jennifer sought help from a therapist as well as a specialist in Lyme disease who was a member of ILADS (International Lyme and Associated Diseases Society).  Jennifer’s therapist, Michelle, spoke to her about her dreams that involved Jennifer water skiing.  In an earlier period, Jennifer was unable to water-ski but had been able to drive the boat for other water skiers.  The literal interpretation of her dream suggested that she was missing the ability to water ski herself.  However, Michelle suggested that a metaphorical interpretation was that the dream reflected “loss” in a broader sense – the loss of a positive and productive  life style that preceded Jennifer’s debilitation from Lyme Disease.

Michelle suggested that even though Jennifer should be in the “summer of her life” at age 27, the summer would come and the experienced winter of her chronic illness would pass.  The future onset of summer represented hope for a better quality of life.  Michelle questioned Jennifer’s disbelief in the possibility of experiencing “the summer of her life”.  Jennifer expressed her doubts when Michele said, “you can live a happy, fun, fruitful life once you are well”.  Jennifer has gone on to publish her book despite her personal hardships, and become a story coach and trainer, author of a weekly column for the  Global Lyme Alliance and facilitator for the Creative Meetup group, hosted by the Health Story Collaborative.

Creative Meetup Process – Writing Prompts

Following the reading of the stimulus material, we were invited to address one of the following writing prompts:

  • Write about something that you have lost as a result of chronic illness.
  • What have you replaced or how have you transformed this loss?
  • How would you describe the season of your current illness?

I decided to address these prompts together because they were interdependent.

The loss I focused on was my inability to play social tennis during the cold seasons of the year because of chronic arthritis in the joint of the middle finger of my right hand.  The cold weather aggravates the arthritis which is also aggravated by allergies (allergic arthritis brought on by MCAS).  However, I have been able to replace my social tennis with weekly social pickleball which also enables me to play more consistently because I play it indoors and am not subject to the vagaries of the weather (or exposed to cold winds).  While I still have to manage the arthritis in my finger, the impact of hitting the ball is not as great or painful as it was with tennis.

The Summer of my medical condition

When I thought about where I was up to with managing my current chronic health conditions, I thought of summer – a season of hope.  I have located a general medical practitioner who is an immunologist and very willing to explore a range of treatment options.  She is also willing to listen and not jump to conclusions. 

Pickleball has been a very effective and rewarding replacement for my social tennis.  The gains through pickleball are many and varied:

  • New knowledge and skills
  • The opportunity to continuously learn
  • The chance to try out new shots – experiment
  • The ability to build on existing competence in shot making and strategic play built up over many years of tennis (more than 60 years)
  • A new form of exercise and increased motivation to stay fit.

Pickleball has transformed my weekly social, physical activity so that it is not as demanding as playing tennis.  It also provides a range of new rewards:

  • Joy from experiencing new competence (intermediate level pickleball skills)
  • Developing new friendships
  • Fun with playing with different partners in a social environment (the requirement to “play nice”, rather than all-out competitively)
  • Social support from people who are also aged and experiencing physical limitations
  • The enjoyment of looking forward to catching up with my pickleball group and playing more games.

When I reflect on my current medical condition, I can appreciate that in many senses I am experiencing a summer of my chronic illness.  I have framed my present state as “summer” because of what I have achieved or am achieving:

Reflection

I’ve recognised that a prerequisite for managing chronic illness is acknowledging that there will be ups and downs, times of moving forward and other times of regressing – there will be winters and summers of our chronic illness experience.  For each of the seasons of our medical condition, there are strategies that we can use to heal and recover.  One of these is the process of writing.

If we can grow in mindfulness through practices such as Tai Chi, meditation and mindful walking, we can learn to reframe our situation, express gratitude for what he have and can do and access our creativity to explore healing options.  There is a lot of helpful information on the Internet that is readily available to us if we choose to look.  The real test is in the application of what we learn. 

Dexter Dunphy and Bob Dick, in their book Organizational Change by Choice, provide a relevant quote from an anonymous author (p. 126):

To look is one thing
To see what you look at is another
To understand what you see is a third
To learn from what you understand is something else
But to act on what you learn is all that really matters.

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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 Jürgen 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.

Working with Emotional Energy

Lion’s Roar provides a deep resource base for developing an insight into Buddhism.  The website provides a full glossary of key Buddhist concepts, traditions and terms as well as an extensive library of audios (advice and meditations), in-depth articles and guides for meditations).

In one of the many audio resources, Sharon Salzberg , author and mindfulness meditation teacher, interviewed Buddhist teacher, Dzogchen Ponlop Rinpoche.  The discussion covered the topic, How to Work with Your Emotions.  Dzogchen Ponlop is the author of the classic book, Emotional Rescue: How to Work with Your Emotions to Transform Hurt and Confusion into Energy That Empowers You.

Emotions as energy

Hilary Stokes, PhD and Kim Ward, PhD point out that the word “emotion” derives from the Latin, “emotere” which literally means “energy in motion”.   They draw on the work of Barbara Frederickson, positive psychology pioneer, to show that challenging emotions such as fear, resentment, anger and frustration can constrict our thinking.  Because we tend to focus on the inherent threat of these emotions, we effectively block out new ideas and create barriers to building “resources and relationships”. 

Dzogchen Donlop stated that as a teenager he was angry and vengeful but eventually realised that he had a choice in how he worked with emotional energy.  Viktor Frankl reminded us that between stimulus and response there is a gap and in that gap lies the freedom of choice.    The energy of emotions can undermine us or empower us and we have a choice in how we manage the power of emotional energy..

Moving emotional energy

Hilary and Kim maintain that we can sense emotional energy moving through our body and it can be experienced either as expansion (e.g. feelings such as happiness, joy, calm) or contraction (feelings such as sadness, anger, envy or resentment).  While emotional energy itself is neutral in nature, it is perceived as either positive or negative based on our interpretation of the associated feelings and bodily sensations.  We ascribe meaning to emotional energy based on our inherent assumptions, life experiences and thought patterns (e.g. optimism or pessimism).

By their very nature as energy, emotions are “meant to be felt and released”, not “suppressed and ignored”.  Hilary and Kim argue that burying emotions rather than releasing them results in “low emotional intelligence and stress burnout”.

In the interview with Dzogchen Ponlop, Sharon Salzberg described a situation where she was participating in an intense meditation training course when the Buddhist meditation teacher challenged her about how she was dealing with her sadness at the loss of a friend.  She tended to bottle it up because she thought “negative emotions” were “not approved”.   However, the Buddhist teacher advised her “to cry your heart out” to release the energy of her emotions.  She was advised not to push her emotions away or to be “embarrassed by them”.  Instead, she was encouraged to “have a relationship” with her feelings.

Dzogchen Ponlop, in the interview discussion, suggested that we notice how energy of an emotion changes over time, it “never stays the same”.  He argues that when we experience an emotion we should not “judge it” or “conceptualize a storyline” – not try to work out how it arose.

Working with emotions to release emotional energy

Hilary and Kim maintain that bodily sensations provide the key to unlocking emotional energy, removing limiting thought patterns and overcoming stress.  They suggest that thought-based approaches are limited in shifting ingrained, suppressed feelings.  In their view, sensations provide reliable information about bodily and emotional states.  They point to the growth of somatic therapy to deal with trauma and adverse childhood experiences, including processes such as somatic experiencing.

Hilary and Kim advocate an approach to releasing emotional energy that they call “bodymind listening”.   They  argue that if you “allow your body to feel the feelings”, you will be able to access “insightful, accurate, and practical guidance” in the form of messages that can lead you to identify limiting thought patterns, facilitate release of emotional energy and heal your body and mind.

The process of “feeling the feelings” requires openness and curiosity (a mindfulness orientation) and suspension of rationalisations, justifications, judgments and “righteous protection”.  To this end, Hilary and Kim offer a meditation on Emotions are Energy for releasing stress, letting go of stuck emotions  and strengthening the connection between mind and body.

Reflection

Challenging emotions can be experienced as positive as they can serve to awaken us to a “sense of disorder” when our body-mind is seeking homeostasis.   Fear, for example, warns us of danger and is essential for maintaining life and survival.  Emotions, too, can open our hearts and enable us to express vulnerability and build relationships. 

I recently experienced anger and resentment over a particular incident at a sporting event.  I found that I kept playing the incident over and over in my head, developing justifications for my “righteous anger” and, in the process, intensifying my negative feelings.  This experience proved to be quite disturbing – upsetting my equanimity.

A reflection on resentment helped me to put the issue in perspective.  However, from the above discussion I gleaned that I need to “feel the feelings” (without the contaminating influence of the rational brain), in order to heal at a deeper level.

As we get in touch with our feelings and our bodily sensations, we can grow in mindfulness and develop a deepened awareness of our limiting thought patterns and access creative options for healing and personal growth.

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Image by Alexander Antropov 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.

Memoir-Writing for Healing

Janelle Hardy, writer and somatic healer, recently produced and hosted the Healing Through Writing Festival with multiple facilitators who themselves are writers and healers.   Janelle is the creator of the course, The Art of Personal Mythmaking: Write Your Memoir While Healing Yourself, which is designed as a self-directed approach to healing while writing the first draft of a memoir. 

The 13-module course includes writing prompts, somatic visualisations and other techniques, and a process for outlining your storytelling.   In developing the course, Janelle drew on her training and consulting experience in bodywork and somatic approaches to trauma healing.  Her techniques and tools enable course participants to gain “clarity, focus and structure” as they write to heal.

Janelle also offers a 9-module, self-directed course, Write Your Life Stories, Heal Your Past, which is also designed to help us heal from our difficult experiences while working on a memoir.  This self-paced memoir-writing course incorporates somatic healing techniques as well as guidance for choosing forms of storytelling, assistance in outlining a memoir, ways to overcome writer’s block and tips about the writing and editing process.  The course is designed to help us deal with our difficult life experiences through writing without becoming overwhelmed.

Writing prompts and the road to healing

Throughout her Festival presentation, Janelle offered several writing prompts designed to elicit recall and identify elements of our life story.   The prompts covered both challenging and rewarding experiences, bodily sensations and personal insight.  I found the prompts particularly fruitful for “loosening the cobwebs”. 

By way of illustration, Janelle shared her own story of chronic fatigue and her acute shyness. She would often experience a “frozen state”  and become “stuck”, with her creativity blocked. After a relationship breakup, she had to deal with her role of a single parent and, at the same time, cope with her negative self-stories.  She sought healing through multiple modalities including somatic experiencing, dance, writing and research and experience of different cultures.

Janelle highlighted the fact that we store and release stories in our bodies.  This is in line with the research and writing of Bessel Van Der Kolk who published the book, The Body Keeps the Score: Mind, Brain and Body in the Transformation of Trauma.  Janelle introduced a basic somatic exercise during her presentation that involved listening to sounds, touching, stretching and feeling bodily sensations.  She incorporates somatic practices in her courses because she firmly believes that we can reclaim ourselves through our “bodies, stories and desires”.   Janelle described dance as an “embodied language” and found that it helped to reduce her stiffness, tightness, stress and related feelings.

Janelle explained too that we understand the world through cultures.  To really appreciate this idea, she became an exchange student and undertook home stays in Japan, Russia and Canada.  Given the pervasive nature of cultural influences, a useful writing prompt could be, “What influence has your cultural upbringing had on your own life story and how you perceive yourself?” 

I recently gained an insight into the influence of cultural experiences on our self-stories and how we perceive ourselves by reading the novel Runaways, a memoir by Shelley Davidow and Shaimaa Khalil.  The joint memoir tells the story of their 20-year friendship across cultures after meeting at the University of Qatar where Shaimaa was one of Shelley’s students. 

Not only were they “strangers in a strange land”, but also they brought to their relationship and self-stories the influence of their different cultural upbringings – Shelley was an Ashkenazi Jew from South Africa (with its entrenched racial tensions) and Shaimaa was an Arab Muslim from Egypt (with its class tensions).  Their memoir shows the intertwining of different cultures on the stories they shared and how their story was influenced by their life in Qatar. 

Shelley and Shaimaa explain what shaped them, broke them and the ways they returned to “wholeness”.  At different times in their shared storytelling they communicated their individual experiences and reactions in the form of a reflective poem. 

Janelle offers a series of writing prompts which are available from her website by subscribing to her newsletter: 10 Memoir-Writing Prompts for Healing and Transformation.  Her blog, which contains interviews with creative writers, essays on writing and reviews of websites, is a potentially fertile ground for other prompts.

Creating a theme for a memoir

The process of writing to story prompts enables us to discern various themes, common threads, in our life story.  We can then choose a theme to shape our memoir – exploring which stories in our life serve the theme.  Janelle explained that the selected theme then becomes a “tool for discernment” – assisting us to decide what stories to include and what to exclude.   We can potentially use the discarded stories as the basis for another memoir. 

This process of choosing a theme reminds me of my process in writing my doctoral thesis – the data collected could have been the basis for several different theses but I had to decide what was my central “claim to knowledge” and what data I could include to warrant that claim.  This involved then deciding what elements supported the core thesis and should be included and what should be left out.  I created a folder to store the other ideas and concepts for perusing at a later date.  When I submitted my thesis, I revisited my folder and produced a number of articles including one on the art of thesis writing as a movement through the Seven Chakras, from the Base Chakra to the Crown Chakra – a reflection on my thesis writing journey.  The thesis also incorporated my reflections on my role as a change manager within the Taxation Office – a potential theme for a memoir.

Janelle noted that memoir writers often write more than one memoir as they have several themes running through their lives.  The Australian author Shelley Davidow, for example, wrote  4 memoirs – Runaways (2022), Shadow Sisters (2018), Fail Brilliantly (2017) and Whisperings in the Blood (2016).

Janelle explained that a memoir becomes a meaning-making force that enhances agency and autonomy.  She shared her story of heartbreak and challenge that left her feeling abandoned and hurt.  Through writing, social support and somatic healing she was able to reframe her story from that of victim to someone with skills, choice-points and the opportunity for further personal development through self-employment.  She rewrote her story by “piecing together somatic healing and memoir-writing as an act of service” that enables people to avoid the disempowerment of a victim mentality and experience agency through creating a new self-story in the form of a memoir.

In her podcast, Janelle talks to storytellers and memoir writers along with healers.  The transformative conversations cover not only memoir-writing but also healing, narrative therapy and embodiment.  Through the podcast, storytellers share how they have moved from victimhood to personal freedom and agency. 

Reflection

Janelle has used her blog as a source of “personal mythmaking” by reflecting on her own life experiences as she shared insights on topics related to writing and healing.  Her essay and audio on “How to Shift Resistance” is a good example. 

I have found that in writing this current blog, I have been able to share my personal reflections on the topics I was writing about.  In the process I have been sharing my life story.  In reviewing the 775 posts I have published to date, I have been able to identify several core themes that would serve as the focus of separate memoirs.  I have now chosen one focal theme and begun writing my first memoir using the Kindle Create program as my writing and formatting process.

As we grow in mindfulness through somatic practices, reflection, blogging and memoir-writing, we can increase our self-awareness and sense of agency and reframe our life stories.

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Image by Firmbee 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 Space Between – Overcoming Overwhelm

Susan Sontag, in her book Illness as Metaphor, reminds us that we have dual citizenship – “in the kingdom of the well and in the kingdom of the sick”.  At some point in our life we move from one to the other “even for a spell”.  For chronic illness suffers this can be a very long spell which is part of the inherent challenge of chronic illness.

When Susan wrote about illness she was suffering from breast cancer at the time and took issue with the metaphors and myths that surrounded this form of illness.  Myths include the idea that illness is “a punishment for moral degradation”.  In her view, such myths only added to the burden of illness and failed to create space for healing.  Susan also took exception to military metaphors such as “battle”,” war” and “survival” used to describe illness from cancer.  She suggested that these metaphors negatively affect patient’s physical and mental wellbeing as they induce fear, guilt, and a  sense of isolation – factors along with the illness itself contributing to overwhelm.

Susan was concerned that inaccurate myths and inappropriate metaphors induced a sense of helplessness, detracted from the biological nature of Illness and ignored the scientific evidence that many illnesses are curable through breakthroughs in modern medicine.

Finding agency in the space between

In a previous post, I discussed ways to develop agency in the space between illness and wellness (however temporary).  This included strategies for exercising agency as a writer, employing education and research and exploring options in our recreational and/or artistic endeavours.  I gave the illustration of Lucy and her exercise of creative agency through piano playing despite being totally blind and experiencing multiple mental health issues including autism.

Fighting misinformation to overcome overwhelm

Mal Uchida, writing for Havard Medicine, recounts her experience of having the COVID-19 vaccination while pregnant.  She was publicly attacked in social media and received multiple forms of hate mail for her stand for the health of her unborn child.  While expressing empathy for people who held the contrary view about the efficacy of the vaccination, she continued to advocate for its potential health benefits.  Being both a mother and a child psychologist, she was able to empathise with parents who were making the really difficult decisions associated with raising children. 

Mal attempted to counter misinformation and associated overwhelm and fear by sharing her own struggles, discussing relevant scientific information  and enlisting the aid of the media and Japanese Government to communicate her message.  She acknowledged the dilemma for parents, expressed empathy and compassion and sought to provide accurate, up-to-date information.

Strategies for managing overwhelm during life transitions

There are many transitions that we experience in life – including from childhood to adulthood, from wellness to illness, from a current job to a new job, from marriage to divorce, from loss to gain, from working to retirement.   Mindfulness can help us to effectively overcome the overwhelm involved in the transitions in our life.  For example, Dr. Shalini Bahl, author of Return to Mindfulness, offers an 8-week online course titled, From Overwhelm to Clarity: Mindfulness Skills for Breaking Free and Living Fully.  This course involves a supportive community and offers mindfulness micro-practices designed to develop awareness, compassion, inner calm, joy, energy and equanimity.

Storytelling can help us to unearth our manufactured “life story” – that often involves “negative self-stories” that undermine us and create overwhelm.  An integral part of storytelling is a supportive community that enables us to be truly honest with ourselves by providing “supportive challenge” – questioning our assumptions about ourselves and others while offering support to be the best person that we can be.

Reframing can help us cope better with life’s transitions such as aging or menopause.  It involves changing our “negative narrative” and exploring the opportunities provided by “a different stage of life”.   Marianne Cronin in her novel, The One hundred Years of Lenni and Margot, provides an example of reframing by Margot who is 83 years old and suffering from a terminal illness.  Margot comments, when sharing stories, that at her stage of life she is “a childless mother, husbandless wife, a parentless daughter”.  Instead of dwelling on the inherent losses involved in her stage of life she notes that “it was sad, but also freeing” because she was “no longer anybody’s” and was free to go anywhere and do anything she wanted.  Margot ended up establishing a deeply personal relationship with17 year old Lenni through storytelling and the shared experience of a terminal illness.                                 

Wintering – the process of letting light into the darkness in our life – can help us to identify the opportunities in the spaces between, e.g. between wellness and illness.  We can let the light into our lives and the darkness of overwhelm through gratitude, intentional breathing, exploring nature and focusing on self-care through “rest and retreat”.   Writing a reflective poem (as I did in my wintering blog post), can help us to reduce overwhelm and identify a way forward.  It can even help us to see the “gift of illness”.   

I have found that education and research have helped me to deal with the potential overwhelm of a chronic illness.  I’ve been able to access resources about my MCAS condition through participation in global summits, reading expert articles and enrolling in a relevant, mindfulness-based course for tempering reactivity of the vagus nerve involved in MCAS.  There are many free resources available online for specific illnesses, such as the Guide for Driving with Epilepsy that covers manifestations of epilepsy and essential considerations and safety tips when driving.

A meditation to overcome overwhelm

Mitra Manesh, meditation trainer with UCLA, offers one of their weekly meditations on the topic, Working with Overwhelm.  In this guided meditation, Mitra discusses the causes of overwhelm in today’s fast-moving, complex global environment.  Factors contributing to overwhelm include climate change, international wars and conflicts, economic uncertainty, rapid technological innovation and the changing global political environment. 

She suggests that we can view overwhelm by envisaging a cup that represents a certain level of personal capacity to which we add information and visual overload, social media obsession, family and economic challenges, health issues and workplace friction and changes.  The resultant overflow represents our overwhelm.

In her guided meditation Mitra encourages us to use visualisation and cultivation of options for moving forward.  She suggests that we envisage walking through a gate to a large open space with grassy slopes, a water feature, trees and a fresh breeze.  Taking deep breaths to imbibe the fresh clean air, we can begin to relax and feel supported within this visualised environment.  The options for moving forward then include:

  • accepting something within our current reality (that we are resisting or denying)
  • letting go of a constraining mindset
  • thinking about who or what might assist us to move forward
  • focusing on something we can do now that is doable and important (“don’t look at the pile” that is the source of overwhelm – focus on one thing!).

We can return at any time to the envisaged, spacious landscape which provides “lots to choose from” and offers openness, support and potential wellness.

Reflection

When I participated in Mitra’s meditation on how to work with overwhelm it helped me to reduce overwhelm I was experiencing in a small area of my life, writing this particular blog post.  We had just come out of the other side of a week-long cyclone and I was finding it difficult to focus on my writing.  After doing the meditation I found that I could move forward by accepting the disruptive nature of recent events, changing my expectations and letting go of a framework for the article that was constraining rather than freeing me.  

Simultaneously, I received an email from Shalini about her course, From Overwhelm to Clarity, and this gave me added incentive to adopt a new framework for the blog post around the concept of “overwhelm”.   While writing this blog post represents a small area of my life, writer’s block had the effect of negatively impacting other areas of my life such as my ability to concentrate and focus on what I was doing.

Growing mindfulness through meditation, Tai Chi and micro-practices such as intentional breathing can help us to relax and rest, see a way forward, and adopt creative solutions to the disabling effects of overwhelm.

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Image by Plutozoom 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.

Exercising Agency When Living with a Chronic Illness

There is a story in chronic illness – it’s evolution, it’s manifestation, our proactive attempts to manage it and its resolution (whatever form that takes).  Managing chronic illness invariably involves the three “As” – acceptance, accommodation and agency. 

Agency refers to our capacity to have some control over our internal and/or external environment.  Typically, chronic illness reduces our agency in various areas of our life because it creates some form of disability which can be far reaching or limited in its manifestation in our day-to-day lives.  The challenge for people with chronic illness is to limit the loss of agency where possible and increase its presence in other areas of our life.

How to develop agency as a writer with a chronic illness

In a previous post, I discussed ways to develop agency when we are trying to write while having a chronic illness.  In that post, I discussed specific strategies relating to writing such as setting your own pace, finding a comfortable location for writing, writing a reflective poem and starting small.

I have developed agency in my own writing despite having MCAS, a chronic disease affecting the immune system.  One form of accommodation I have adopted is to reduce my expectations about the frequency with which I produce a blog post.  I have also written a series of reflective poems to help me manage the symptoms and feelings associated with MCAS.  I have also started a new writing enterprise in the form of a co-authored book on management (now in its first draft stage).  I have had to exercise self-compassion with this project because of the setbacks I have experienced during my writing efforts – setbacks such as the bankruptcy of our contracted publisher, the loss of data, the serious illness of my coauthor, and a week-long cyclone and associated anxiety and disruptions.

Developing agency through research and education

In an earlier post when I discussed a holistic approach to MCAS and histamine intolerance, I mentioned the work of Beth O’Hara, FN, a sufferer from multiple chronic illnesses.  Beth used her illness to motivate herself to research her own health solutions and to create the Mast Cell 360 facility which offers paid, holistic health interventions as well as  free resources.  Her research and her own clinical practice highlighted the role of the nervous system in the development and expansion of MCAS. 

Beth’s proactive approach to understanding the role of the nervous system in MCAS was to provide a specialised, online course to help MCAS sufferers gain control of their nervous system which is variously dysregulated with MCAS.  Her self-help program, Master Class to Reboot the Mast Cell Nervous System, gives sufferers some degree of agency over their own health improvement.

Through this Reboot Course I came to better understand the components of the nervous system and how the nervous system interacts with other systems of the body (e.g. the digestive system).  The Roadmap incorporated in the course gave me insight into the vagal nervous system, factors impacting it and manifestations of damage to the vagal nerves.  More importantly, the Roadmap provides strategies to address vagal nerve excitation based on the level involved.  In other words, through this Reboot Course I have a way of exercising agency over my own nervous system and its level of excitation.  This provides a proactive way of managing the nervous system element of MCAS which according to Beth represents 50% of the recovery protocol.

Typically, a chronic illness will have a pattern – good days, bad days; good periods, bad periods (of variable duration).  Once we understand the pattern of our chronic illness (how it manifests itself from day to day), we can exercise agency by utilising the “good” times to undertake what we consider to be important and productive.  This can involve writing prose or poetry, engaging in social work or undertaking part-time employment as Jennifer Crystal did with her part-time teaching while she experienced the difficult aspects of Lyme Disease.

Exercising agency in our recreational activity

Agency can also extend to our recreational activity – we can shape our activities to fit our physical, emotional and/or mental ups and downs.  I play social tennis despite having MCAS which often means that my ankles and legs are swollen and I have arthritis in one of the fingers I use to hold a tennis racquet. 

I have found that swelling in my ankles reduces my mobility.  I find that the lack of mobility is very frustrating as this used to be a strength of my tennis game (I was a champion sprinter during secondary school).   Now with the swelling I feel anchored on the spot, not able to accelerate forward.

As the inflammation is caused by sensitivity to some foods and drinks, it is within my control to limit these to reduce the swelling and improve my mobility.  This, however, is easier said than done as it severely restricts what I can eat and drink.

Another related area of agency with regard to the quality and enjoyment of my tennis game is undertaking exercise on a daily basis – including walking, a daily exercise routine (designed by my exercise physiologist) and my Tai Chi routine.

I re-learnt recently that most of the power of a tennis shot comes from your legs, not your arms or hands. I was getting very frustrated with the arthritic pain in my fingers which caused me to lose power in my arms and hands.  However, I have found that by bending my knees with each shot (as I used to do), I can restrict the pain in my fingers and hands and increase the accuracy and power of my tennis shot.

An added benefit of this form of agency is that by bending my knees I unconsciously activate my body memory so that I can access a wider range of tennis shots than I would normally play without the knee-bending. You only have to watch Grand Slam tennis to see how much players, both male and female, rely on bending their knees to gain power and to play a wide range of tennis shots (some even kneel at times to absorb the power of an opponent’s shot).  So the simple act of knee-bending gives me a form of agency that increases both the quality and enjoyment of my social tennis.

Reflection

The challenge with chronic illness is to identify areas for increased agency and to experiment with particular strategies to activate whatever agency we can find in whatever window of opportunity reveals itself.  Mindfulness practices such as meditation, conscious breathing, reflection and Tai Chi can help us to be open to opportunities for agency and to act on them.  As we grow in mindfulness, we can gain insight, heighten creativity and develop the courage to act on our increased self-awareness.

The story of Lucy, a 13 year old blind girl who is also neurodiverse, is an outstanding example of what is possible when we focus on our strengths rather than our deficits. Lucy is a prodigal pianist who has wowed audiences in places such as Leeds Train Station with her rendition of the extremely complex Chopin piece “Nocturne in B-flat Minor Op.9 No.1”.  She competed in a public piano competition with three other gifted pianists who were selected by Lang Lang, world famous pianist who was “speechless” with her performance and chose Lucy as the best of the four pianists. 

Lucy achieved agency in the form of her creativity and musicality, playing complex classical pieces for audiences, by utilising her strengths despite her obvious disabilities.  She has highly developed hearing and an incredible sense of touch – she learned to play the piano by placing her fingers under the fingers of her piano teacher as he depressed each key.  Her sensitivity in playing the classical pieces astounded Lang Lang.  She played at the Coronation Concert at Windsor Castle on 7 May 2023.  Lucy has since produced a classical piano CD, simply called Lucy – The Album.  Lucy’s story and her training through the Amber Trust and her teacher, Daniel, is available on video.

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Image by yoshitaka2 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.