Category: Mental Health

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.

How to Write with a Chronic Illness

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

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

Challenges for writers with chronic illness

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

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

Feelings experienced by writers with chronic illness

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

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

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

Strategies to use while writing with a chronic illness

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

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

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

Reflection

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

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

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

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

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

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

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

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

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

The Gift of Illness

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

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

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

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

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Image by Leandro De Carvalho from Pixabay

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

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

Writing a Reflective Poem to Manage a Chronic Illness

I participate each month in a writer’s group for people experiencing chronic illness and/or disability.  We meet online on Zoom and undertake reflective writing following a stimulus piece (e.g. a poem, a song or short story) introduced by our facilitator.  We then share what we have written, being open about our challenges and the feelings we experience in dealing with them. 

An added benefit of our Creative Meetups is the willingness of participants to share their strategies for dealing with their difficulties.  While we each have quite unique health conditions, we are readily able to relate both to the feelings expressed by others and the strategies they share to overcome any negative self-talk.  Through the online Meetups, we can see other participants from around the world and progressively build relationships with members of the group.

The facilitator for our Creative Meetup group is now Jennifer Crystal, author of One Tick Stopped the Clock.  Jennifer is a story coach with The Health Story Collaborative that hosts our monthly Meetups.  So we have the distinct advantage of having a facilitator who is experienced in narrative therapy and teaching people how to write for healing.

Reflective poems: a strategy for managing chronic illness and associated feelings

One of the participants in our January Creative Meetup, mentioned that he writes a reflective poem as a means to “tell himself what to do” when he is overcome with difficult feelings such as anxiety or depression.  As an amazing piece of synchronicity, I had done exactly the same thing the night before the Meetup.

I was beginning to get frustrated with the constant flare-ups of dermatitis, set off by my multiple food sensitivities, when I began to ask myself, “Why do I keep eating things that I know will cause a flare-up of dermatitis?” Through the reflective poem, I was able to stand back, look at the consequences of my actions  and form the resolution to behave differently.  My recent reflective poem has enabled me to find light in the darkness.  The poem acts as a “bridge to action” in the face of inertia.

The Creative Meetups are a great stimulus to write and share our stories and the group provides ongoing support for behavioural change.  The insights gained from the stories of other participants are invaluable.  I have found, too, that I invariably write a poem after each Meetup – which is helping me to grow in self-awareness and to address unresolved issues in my life.  For example, I have written the following poems stimulated by activities of our monthly Meetups:

Healing through storytelling

Jennifer Crystal’s book, One Tick Stopped the Clock, epitomizes the healing power of storytelling encapsulated in the Creative Meetups.   She shares her feelings of being frustrated with the medical profession (it took 8 years to obtain a correct diagnosis of her chronic illness), how she had to develop a new identity and find ways to achieve self-care amidst her debilitating experience.  The strategies she employed to manage her challenges and difficult emotions included writing and pacing herself.  Jennifer’s proactivity, like that of participants in the Creative Meetups, act as inspiration for me to take action on my own chronic health condition.

Like Jennifer, I initially sought the advice of my General Practitioner only to find that the issue of allergy was outside his area of expertise.  However, to my frustration, he did not inform me that the clinic had a doctor who was trained in immunology.  After searching the profiles of the clinic doctors, I found a doctor who had a PhD in immunology and had worked in a number of hospitals as an immunologist. Through her referral, I had an appointment with a specialist who was a clinical immunologist and allergist.  Once again, my proactivity led me to unearth an erroneous assumption that I had made. 

The immunology specialist pointed out that I did not appear to have Mast Cell Activation Syndrome (MCAS).  He explained that there were two levels of Mast Cell Activation – mine related to Level 1 which was largely confined to the skin and was reflected in dermatitis.  He stated that MCAS, the syndrome level, was more episodic and systemic (including symptoms such as diarrhea, brain fog, breathing difficulties and digestive problems).

Reflection

I have been trying to manage my chronic condition of an overactive immune system but recently a tick bite set me back considerably as my dermatitis flared up resulting in a short time at the Emergency Centre of a hospital.  My feelings of frustration at not being able to eat a wide range of foods were generating a sense of helplessness. 

I have found that writing a reflective poem helped me to identify what was in my control and to face up to the actions I needed to take to redress my symptoms.  As I grow in mindfulness through reflective writing, I am gaining increased self-awareness, tapping into my creative energy and generating momentum for positive behavioural change.

The following reflective poem flowed from Creative Meetups and related storytelling and shared wisdom:

Managing Chronic Illness Mindfully

The chronic condition:
immune system overdrive,
comfort and pleasure turned to discomfort and pain.

Focusing on deprivation:
makes it more difficult,
harder to avoid the breakouts.

The brief taste sensation:
gluten delicacies enticing temptation,
causing skin damage.

Setting off micro-implosions:
lasting rash, hives and itch,
discomfort magnified by frequency.

The body keeps the score:
registering every aberration,
exacting its toll.

The way forward:
openness to “what is”,
bringing light to depressing darkness.

Paying attention to the body:
listening to the body’s wisdom,
breaking free of emotional blackmail.

Buying time to heal:
avoiding alcohol and sleep deprivation,
eliminating causes of flare-ups.

Reducing the need for cortisone ointment:
protecting the body’s skin barrier,
restoring immune equilibrium.

Mindful awareness growing inside:
opening to nature’s beauty,
savouring life-giving breath.

Discerning the locus of control:
identifying what I can change,
acting on this insight.

It’s time to rebuild:
exercising and osteopathy,
walking and Tai Chi.

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Image by Melanie 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.

Beyond Happiness: Strategies to Find Contentment

Gregory P. Smith wrote a book explaining the practical steps and strategies that he employed to turn his life around from being friendless, homeless, unemployed and broke to living a life of fulfillment and contentment.  His book, Better than Happiness: The True Antidote to Discontent, is a heartfelt exploration of his transformation where he openly discusses his anger, depression, and violence (to himself and others). 

Gregory had previously spent 10 years alone in the forest to escape from a society that he found to be superficial, manipulative and harmful.  The story of his survival in harsh forest conditions is captured in his book, Out of the Forest, where he explores his survival strategies and self-exploration.  His escape to the forest was, in part, a reaction to his traumatic upbringing where he was physically beaten by his father, placed in an orphanage, suffered “negative labelling” by fellow school students, and treated with contempt in youth detention centres.  He was unable to sustain employment because of his turbulent lifestyle, drinking to excess and doping on drugs.

Gregory has transformed incredibly completing a PhD, becoming an international speaker and advocate for the homeless and disadvantaged and achieving the Order of Australia award  for his community contributions.  His story incorporating the Order of Australia Medal award was captured in a 2023 episode of ABC’s Australian Story. Gregory strongly advocates that we do not ignore homeless people but give them a smile of acknowledgement (even if it is risky), as it can change their life.

The process of transformation

Gregory gave up alcohol and drugs and found a way to “become human” again.  His process involved much soul-searching and vigilance to avoid “sliding back” and indulging in ‘self-destructive behaviours”.  Gregory’s story of transformation is captured in the earlier Australian Story filmed in 2018.  He also shared his story in a 2021 TEDx Talk, From Forest Hermit to Professor of Sociology (transcript available through this link).

In discussing his journey in various media and in his books, Gregory highlighted a number of key elements/strategies that enabled him to move beyond happiness to a life of contentment with his very significant social and academic roles and a farmed-based life with his family.  These strategies included the following:

  • Accepting that he had created his own diabolical situation: instead of blaming others for his unhappy life, lack of friendships and homelessness, he began to acknowledge that his adverse situation was the result of choices that had made.  Instead seeing himself as a “victim” powerless to change, he recognised that he could turn his life around if only he had the resolve and willingness to do whatever was needed to improve his life and achieve contentment (a positive state beyond happiness).  Gregory focused on “acceptance” of what is – the fact that his “deepest wounds were self-inflicted”  and that his internal battles had been “destructive.”   He needed to develop the serenity to accept what he could not change, build the courage to change the things that were within his control, acquire the wisdom to discern the difference and understand his “locus of control”.
  • Forming an intention: Gregory resolved at the outset of his changed approach to “be a better man”.  This unshakeable resolve led to many changes in the way he viewed the world and people in it.  He had to challenge his attitudes and reframe how he thought about himself.  Intention forming helped him reshape his life.
  • Giving up alcohol and drugs: this was a foundational decision in line with his intention.  He knew from his experience of alcoholism and addiction that he could not pursue his resolve without giving up the power that alcohol and drugs had over him.  He realised, too, that his addictions were an ineffective way to deal with the pain of his traumatic childhood and adolescence.  Gregory had to ward off the commercial and social pressures that tried to force him to conform to others’ drinking and drug taking habits. Once he became sober and drug-free, he found that he could begin to think clearly, make sound choices and plan his next steps.  However, the journey into sobriety was a difficult one, testing him continuously.
  • Taking one day at a time: the complexity of the personal changes Gregory had to make were sometimes overwhelming.  However, his resolve “to take it one day at a time” enabled him to deal with bite-size chunks in terms of attitude and behavioural change.  His philosophy “to begin small” helped him to achieve small personal changes that became reinforcing in terms of the direction he was trying to head in – they also served to build his sense of  self-efficacy.
  • Volunteering with the RSPCA: Gregory had been a forest recluse for 10 years and was consumed by anger and hate as a result of his physical and psychological abuse in early childhood and debilitating detention experienced in adolescence.  He did not trust people and found it impossible to talk to them.  He decided to take the small step of volunteering with the RSPCA looking after dogs which enabled him to get in touch with the furry animals that he loved but also to begin to engage, slowly but surely, with other volunteers.  He also tried Alcohol Anonymous but found that regular participation was not for him – he did acknowledge that on the infrequent occasions he attended a meeting, he learned something from his fellow sufferers.
  • Gaining an education: Gregory believed that education would open doors for him.  Again, he decided to start small and enrolled in a Certificate 1 in Information Technology which when he passed gave him the belief in his ability to study and learn and do well in education.  Being “pumped and motivated”, he then enrolled in a bridging course at Southport TAFE which enabled him to eventually enrol in a university course.  He decided to undertake a course in sociology at the Coffs Harbour campus of Southern Cross University.  This led to an invitation to take on an Honours Degree.  His successful achievement of First Class Honours resulted in the offer of a Australian Postgraduate Award Scholarship to do his PhD.
  • Jettisoning labels: At every stage of his life, Geoffrey had to deal with negative labels. In his book on contentment, he explains the process and difficulty he experienced in “peeling labels”.  He realised that negative labels repeated often become a part of your self-perception (almost by osmosis).  He had been called “stupid’ throughout his life and was labelled a “sociopath” by a psychologist.  He did engage in anti-social behaviour and was violent at stages of his life, but deep down he had an intense desire to do the right thing and be morally upright.  Gregory’s ongoing academic achievements served as evidence that the negative labels he had been branded with were, in fact, false and were often promoted by people who were envious of his free thinking and outstanding transformation.  There were always naysayers who tried to deter him or belittle his goal to “be a better man”.
  • Changing attitudes: Gregory had to change his attitudes and particularly the way he viewed other people.  Instead of making them conform to his expectations (sometimes violently), he began to acknowledge peoples’ idiosyncrasies and accept that people are different and that is okay.  He focused on himself instead and tried to be the best he could be.  However, he acknowledged that “changing an attitude requires constant effort and vigilance”.
  • Being in the present moment: one of the things Gregory learned as a recluse in the rainforest was the power of the “present moment”.  Despite the hardship and deprivation he experienced in this reclusive existence, he was able to focus in on the present moment and appreciate the beauty that surrounded him in the plants, birds, trees and mountains.  He experienced the Power of Now that was a key learning of Eckhart Tolle during his period of homelessness.  Gregory was able to use the power of the present moment to manage the challenges that beset him in his transformation journey.
  • Managing his anger and resentment: after an angry outburst or physical altercation, Gregory would critically analyse what happened – what were the triggers?; what were his thoughts?; what words and actions did he employ?; what was behind his resentment? He came to realise what Viktor Frankl discovered in the concentration camp that there was a “gap” between a stimulus (such as a trigger) and a response and that real freedom lies in that gap and the power to choose how to react.
  • Framing his life as a “three-day-week”: Gregory had to resist the natural tendency to dwell on the past (which leads to depression) or to obsess about the future (which leads to anxiety).  He adopted the concept of the three-day-week as a way to frame his life – “yesterday, today, tomorrow”.  In this way, he could reflect on the day that had passed and take learnings from it, plan his activities for the following day and spend as much time as possible in the present moment.

Reflection

Greg Hassall in writing about how Gregory “survived homelessness, addiction, and abuse” suggested that Gregory’s greatest contribution is to provide a living example of the ability to change and to challenge those who believe that they cannot change because “we are captive to our own histories”.

Gregory argues that “changing who you are is a great adventure” – you need to identify what you will take with you in terms of attitudes and what you have to leave behind.  He showed that intention, being in the present moment, critical reflection and education go a long way to facilitating the necessary changes.

As we grow mindfulness through reflection and present moment awareness, we can develop self-awareness and insight, gain the courage and creativity to change and achieve contentment with our life.  Gregory reminds us that “contentment takes thought, mindfulness, planning, self-reflection, patience and vigilance”.

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Image by Patty Jansen 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.

Wintering: Finding Light in the Darkness

I belong to an online group that meets once a month to share their stories of chronic illness and healing, both orally and in writing.  These Creative Meetups are sponsored by the Health Story Collaborative (HSC) and are designed to enable participants to access the healing power of storytelling.

In our December Meetup,  Jennifer Harris (our facilitator) introduced the theme of the winter solstice and the related concept of moving from darkness to light.  The winter solstice is the time of the year when we experience the longest night and shortest day, signalling the transition from Winter to Spring.  The event occurs at different times in the Northern Hemisphere (December) and the Southern Hemisphere (June).

Throughout history, the symbolism of the transition from darkness to light, represented by the winter solstice, has been celebrated around the world through rituals and festivals.  There is also a very rich core of poetic expression around the theme of the winter solstice revealing the embedded sub-themes of rest, recuperation, replenishment and transformation.

Winter too is a time of transition for animal and plant life.  Animals, for example, often withdraw from the bitter cold of winter and undergo some change in their habitat, feeding and outward appearance.  They will prepare and change to meet the challenge of winter and, in some cases,  hibernate so that they can survive.

The challenge of winter and wintering – moving from darkness to light

Katherine May, captures the essence of the challenge of transitioning from darkness to light in her book, Wintering: The power of rest and retreat in difficult times.  She recounts her personal story of dealing with darkness in her life and her struggle to discover the light that would lead to her transformation.  Katherine initially treated the advent of darkness in her life as a source of humiliation but came to realise that the darkness, like the transition from day to night, is “inevitable”.

Darkness for Katherine descended in the form of illness- undiagnosed autism and depression, as well as death in the family.  She found the resultant involuntary period “lonely and painful”.   Her tendency, like that of many others, was to withdraw, hide from public view and “show a brave face” whenever she could not avoid appearing in public.    

Ivan Cleary, Head Coach of the Penrith NRL team, who suffered from depression during his football coaching career, found it a “humbling experience” and sought to hide the fact and withdraw from interaction with people.  However, he found strong social support through his wife, Bec, and family members.  After his second bout of depression, he learned to share his story with others and to model openness about his condition for the welfare of his players.  Katherine, too, found that sharing her story, rather than hiding away, was healing.  In telling her story to others, she found that there was a “shared thread in their story and mine”.

Learning to invite winter in

After a period of resistance, Katherine learned that “wintering” was a process of reflection and renewal and she gained a sense of “its length and breadth”.  She began to understand that wintering was “not the death of a life cycle but its crucible”.   She was able to recognise the wintering process and “engage with it mindfully and even cherish it”. 

Katherine realised that inviting the winter in involved acceptance of her current health condition (and the nature of the human condition) while making adjustments to achieve ”a comfortable way to live till Spring”.  She found that wintering could create insightful and profound moments in her life.  Katherine concluded that “wisdom resides with those who have wintered”.  Novelist Olga Tokarczuk reinforces this view in her book, Drive Your Plow Over the Bones of the Dead, when she has a key character conclude that “sometimes I think that only the sick are truly healthy”.

My own recent darkness

Over the past month, I have experienced a personal winter and attendant darkness.  My daily life was upended by several concurrent events:

  • A friend and colleague dying of cancer
  • A close friend and co-author/co-facilitator (over 16 years) suffering a major stroke
  • A serious illness of one of my adult sons
  • A major flare-up of my MCAS-fuelled dermatitis.

As a result of these events, I have experienced grief, sadness, frustration, panic, and debilitation.  The social support of my Creative Meetup group, where I have shared my story online, has helped me cope with these challenges.  I am slowly emerging from the darkness as I acknowledge and accept my condition and begin to reach out to let the light in.

 Letting the light in

During our Creative Meetup session focused on the winter solstice theme, Jennifer suggested that we write a letter to ourself, our body and/or the year ahead about what it means to let the light in.  I found that I was able to identify some ways that the light was beginning to penetrate my darkness:

  • Discovered the power of intentional breathing  
  • Became aware of a new hyper-sensitivity to soy products
  • Discovered that an infection from a tick bite contributed to my flare-up (resulting in the MMA allergy – Mammalian Meat Allergy)
  • Gained a referral to a specialist allergist to understand and manage my MCAS
  • Received strong support, TLC and understanding from my wife
  • Revisited the healing power of nature through Louie Schwartzberg’s visual meditations incorporated in 21 Days of Gratitude
  • Drew on the inspiration of my son’s resilience
  • Obtained medical assistance from a hospital Emergency Department.

Reflection

It appears that wintering is a natural part of the human condition.  Our normal tendency is to deny our condition and to hide it from public view, whatever form our darkness takes at different stages of our life cycle. However, if we engage our winter mindfully and embrace its learning opportunities, we can experience renewal and growth, increasingly realizing our human potential.  Katherine reminds us that there can be “a quick onset” of winter or a “slow drip”.  Whatever way it occurs, we can use the inherent challenge of darkness to grow in mindfulness and emerge into the light, wiser and more resilient. 

I created the following poem after reflecting on our discussion of the winter solstice and reading Katherine’s book on “Wintering”:

Letting the Light In

The darkness engulfs me:
a major stroke suffered by a close friend,
the death of a colleague,
serious illness of a relative,
MCAS flare up – dermatitis gone mad,
the light blocked out.

Wintering brings wisdom, resilience and regeneration:
without winter, there is no transformation,
without breath, there is no life,
without darkness, there is no transition to light,
without challenge, there is no growth,
without sickness, there is little wisdom.

Letting the light in:
accepting what is,
seeking out glimmers,
searching out options,
acknowledging the power within and without,
accessing agency to accelerate healing,
admiring the resilience of the healing journey of others,
savouring accomplishments achieved under difficulties,
connecting with others to gain strength.

Being gentle with myself:
sustaining my heart in the midst of heartlessness,
searching for hope in a poem,
seeking intimacy and connection,
finding sustenance in  writing poetry,
expressing chronic pain and frustration,
sharing my story with others,
adjusting my expectations,
savouring freedom and life,
meditating on nature.

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Image Source: 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.