Tag: grow mindfulness

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.

Adopting a Holistic Approach to MCAS and Histamine Intolerance

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

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

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

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

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

The increasing medical complexity of chronic illness

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

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

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

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

A holistic approach to MCAS and histamine intolerance

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

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

Addressing Root Causes of MCAS

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

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

Consuming the Right Foods and Supplements

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

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

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

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

Supporting the wiring of the body

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

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

Reflection

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

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

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

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

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

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

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Image by Gerd Altmann from Pixabay

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

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

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.

Managing People with Confidence

I have been co-authoring a book with my colleague, Julie Cork.  The book, Managing People with Confidence (to be published in 2025), is based on our co-facilitated, longitudinal, manager development program.  We have conducted the 4-6 month Action Learning Program together for the past 16 years.  The book is based on our experience of working with over 2,000 managers and draws on the Resources Book that we have co-authored and provided to Program participants.

I found it intriguing to read Ivan Cleary’s memoir, Not Everything Counts but Everything Matters.  Ivan states very clearly that everything that you do as a leader/coach matters, whether you are in the public eye or not – it matters intensely to your team members.  In our Manager Development Program and co-authored book, we make the fundamental point that as a manager “what you say and do and how you say it and do it” matters – it shapes your team and your team culture.  We emphasise the need to manage mindfully – being conscious of the impact of your words and actions on members of your team.  Ivan reinforces this message by sharing his own learning experiences as a leader and coach.

There are many elements to Ivan’s book about how he led Penrith to three consecutive premierships (despite early career failures and depression) that resonate very strongly with our long established approach to managing people with confidence. Below are some of the elements that we have in common with Ivan when writing about managing people:

  • Consciously creating a team culture: Ivan spends considerable space in his book stressing  the critical importance of consciously establishing a team culture based on mutual respect, commitment and behavioural norms. Our Program emphasised this cultural element very strongly. We encouraged manager participants to think explicitly about the kind of team culture they are trying to cultivate and provided them with a model for developing a productive and mentally healthy team culture.
  • Building trust in the team: Ivan reiterates this time and again because it develops relationships and connection – so that people have a sense of belonging and become focused on the success and wellbeing of the playing team and all team members (including, in Ivan’s case, his Assistant Coaches and other staff).  He emphasises the importance of leadership accountability and authenticity, involving honesty and owning your mistakes.  We encapsulate these themes in our book by emphasising “congruence” – aligning your actions as a manager with your words.  It means not just espousing values but personally acting on them so that you model your desired cultural values in your own behaviours, in your words and actions.  This congruence, in turn, builds trust.
  • Giving positive feedback – in his early career, Ivan failed to do this and acknowledged in his book that it negatively impacted team members. He came to realise the power of positive feedback, acknowledging individual’s contribution to the overall positive team outcomes. The contributions will differ among players and non-playing staff but each person has a role to play for team cohesion and success and this needs to be acknowledged through positive, timely, sincere feedback by the leader/coach.  It’s through positive feedback that we build employee’s self-belief and self-efficacy.  In this way, we can also reinforce the desired values and related behavioural norms of our team.
  • Proving corrective feedback – failing to do this, can lead to self-deception and misconceptions on the part of an individual team member.  Honest, open corrective feedback reinforces cultural norms, builds self-awareness and helps people make the quality contribution that they are capable of.  Like Ivan, in our long-running Program and book, we have emphasised the need to provide such feedback face-to-face  and in private to facilitate understanding and acceptance of the feedback.
  • Being vulnerable to encourage openness by team members: Ivan shared with team members (and in his book) that fact that he had experienced debilitating depression and anxiety at various stages in his career as an elite footballer and coach.   By sharing his own vulnerability, he encouraged his team members to “speak up” about their personal difficulties and to draw on the social support of family members, friends and therapists.  As managers, we can build trust and openness in our team by acknowledging our own vulnerability and sharing strategies to develop positive mental health.
  • Developing individual and team resilience: by providing stretch and helping people to use challenges to build character and grow in confidence in facing inevitable setbacks.  In this way, we enable team members to grow and develop exponentially on all fronts – intellectually, physically and emotionally. In our Program and book, we provide specific strategies for building team resilience, through an approach we call “the 10 C’s”.  Managerial congruence is foundational to this approach. 
  • Delegating to team members and support staff: a fundament challenge for the leader/manager is to be able to “let go” to enable employees to grow and develop and learn  through their own mistakes.  In our book, we highlight the power of delegation and the disablement of others (and ourselves) that occurs when we fail to delegate.  Ivan acknowledged that he learnt the hard way by trying to do it all himself.  He recognises now that trusting others to perform and achieve builds connection, competence, respect and self-belief.
  • Mindfulness to overcome depression and anxiety:  Ivan stresses the importance of being able to stay in the present moment to avoid experiencing depression (by focusing negatively on the past) or anxiety (by focusing negatively on the future).  He discusses ways that different elite athletes have used mindfulness to restore their focus and concentration (away from negative-self-talk) in the middle of challenging encounters (with others or their own mistakes).   Ivan reiterates the importance of mindfulness for “high performance” and positive mental health.  Our own book and related manager development Program provides reflections and strategies to build managerial mindfulness, incorporating both reflection-on-action and reflection-in-action (the latter described by Ivan as “practising mindfulness in the middle of the football field” (e.g. joining our fingers to feel the warm of the blood flow in our hands).  He maintained that so much of his day as Head Coach with the Penrith NRL team is taken up with providing information to players or “mindfulness practices”. Mindfulness helps us to become grounded and firmly focused on the present moment.

Reflection

Both Ivan’s book and our manager development Program and book (currently in production) reinforce the power of mindfulness.  As we grow in mindfulness through reflection and mindfulness practices we can develop self-awareness, build resilience and grow in self-belief and creativity.

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Image by John Hain from Pixabay

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

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

Breathe for Health

James Nestor’s book, Breath: The New Science of a Lost Art, encourages us to breathe with intention.  Drawing on the latest research in physiology, psychology, biochemistry and pulmonology (specialising in the respiratory system, including lungs and airways) to put forward the case for us to make a concerted effort to improve our breathing.  He argues, with solid evidence, that deficient breathing underlies many health issues such as hypertension, migraine, asthma, anxiety, depression, scoliosis, and allergy.  James even provides an additional bibliography of research he has undertaken beyond the publication of his book.

James describes in his book how he often used himself as a research subject, on occasions accompanied by fellow researcher, Anders Olsson.  In a video podcast interview, Anders describes their joint “Mouth Breathing Experiment”.  He contends as a result of research with athletes that “mouth breathing can put the body into a state of stress that can make us more quickly fatigued and sap athletic performance”.

Both James and Anders advocate for nose breathing over mouth breathing and explore the benefits of the former along with the health issues caused by the latter.  James’ book draws on a wealth of research to support their position in advocating nose breathing.  James also explores the benefits of efficient exhaling, holding your breath and chewing effectively.

Based on his extensive research, James contends in his book that breathing techniques developed over thousands of years have multiple benefits – they provide us with the means to balance our minds and moods, boost blood flow, straighten our bodies and stretch our lungs.  He maintains that, in consequence, these breathing practices enable us “to sleep better, run faster, swim deeper, live longer, end evolve further”.

Breathing exercises

James draws on ancient breathing practices to provide a compendium of breathing exercises that can be undertaken by anyone.  The written descriptions of these practices provided in his book are supported by breathing video tutorials on James’s website.

Some of the breathing practices covered in his book include:

  • Yogic breathing (also described in a video on his website) – involving consciously inhaling into the stomach, lower rib cage and the chest followed by exhaling in the opposite sequence.
  • Box breathing – for achieving calm and focus in situations that are tense.  This entails a sequence of inhaling, holding, exhaling and holding,  each to a count of four.
  • Resonant breathing  – achieves coherence between lungs, heart and circulation thus maximising the body’s performance.  Fundamentally, this breathing practice involves inhaling softly for 5.5 seconds and exhaling for the same period.
  • Breathing coordination – increases the efficiency of the respiratory system.  Involves breathing through the nose for a count of ten (counting out softly as you go), then doing a similar process for exhaling (allowing a quiet tapering of the voice as the lung completely empties).

Reflection

James’ book highlights the fact that we unconsciously breathe 25,000 times day and we often breathe too quickly, too shallowly and without resting in a holding pattern – all of which places strain on our body and our individual organs.  As we grow in mindfulness through breathing with intention, we can attain calm, clarity and good health.

I wrote the following poem after reflecting on James’ book and our Creative Meetup discussion of “breathing”:

Until Our Last Breath

They talk of…
“The War to End All Wars”.
Yet we go on killing others and ourselves.
Life goes on…until it doesn’t.

Waves approach and recede,
slapping the shore,
with echoes of times past,
the rhythm of life.

A new day dawning,
the sun rises lighting the sky,
birds twitter,
the sky changes hues.

We breathe in and out,
chest and abdomen rising and falling,
life-giving energy and healing,
we take for granted.

Yet in slowing and lessening our breathing,
we heal ourselves,
extend our lives,
grow our insight and wisdom.

Breath is the ease of life
until we struggle,
obstructed by our ignorance,
overcome by the vicissitudes of living.

Breath is our life,
until our last breath.

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Image by Tung Lam from Pixabay

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

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

Managing Chronic Illness

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

Jennifer’s medical journey

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

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

Stimulus questions during the Creative Meetup

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

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

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

Jennifer’s healing strategies

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

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

Reflection

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

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

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

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

Validation and Accommodation

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

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

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

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

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

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Image by Márta Valentínyi from Pixabay

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

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

Breathing with Intention

In our October Creative Meetup we focused on the theme of “breath” catalyzed, in part, by James Nestor’s book, Breath: The New Science of a Lost Art.  In our discussion, various poems about “breath” were highlighted.  These included Mary Oliver’s poem, I Am Breathing and Rumi’s poem Only Breath where he notes, “first, last, outer, inner, only that breath breathing ”.  The poems and James’ book reinforce the essential nature of breathing for human existence – at every moment that we are alive, we are breathing.

We consciously “hold our breath” for many reasons. It may be to swim under water, to steady ourselves before playing a tennis shot or as part of a mindful breathing exercise.  However, we often hold our breath unconsciously when we experience fear, anxiety, anger or shock.  This was made clear by an exercise we undertook as part of the Creative Meetup.  We were asked to think of a time when we held our breath and explore what happened at the time in terms of bodily sensations and emotions.

What immediately came to mind for me was a car accident that I experienced when I was 12 years old.  I was travelling with my family and my father was driving us home. At one moment, I looked out the side window of my passenger seat to observe a large car approaching on the left (we were in a small car on a main road).  It was as if time stood still as I realised that the oncoming car was going to crash into us and instinctively I held my breath waiting for the impact.  We were hit on my mother’s passenger side and ended up upside down at the foot of a four metre embankment.  I can’t remember when I exhaled but I was aware that my breathing was erratic and I was in shock.

Learning to breathe with intention

James Nestor recounts how he undertook research with free divers in Greece. These divers were able to dive to incredible depths (up to 300 feet) while holding their breath (not assisted by any breathing apparatus).   They could dive to depths that scientists thought were not possible for human beings.  What James learned was that these divers considered breathing a conscious act (not unconscious as most of us breathe in our daily lives).  For the divers, breathing is a mechanism to achieve depth in diving and they intentionally “coax their lungs to work harder” so that they are able “to tap the pulmonary capabilities that the rest of us ignore”.   The divers suggested that anyone who is healthy can achieve what they achieve if they put in the time and energy “to master the art of breathing”.

In talking to a range of divers, James learned that there are multiple ways to breathe and that different ways to breathe “will affect our bodies differently”.   The divers explained that various breathing methods can enhance our brains, lengthen our life span or improve our physical and mental health. Other ways we breathe can have the opposite effects. James discovered that the secret to nourishing our brains and enhancing our health is to breathe with intention.  

James expanded his personal interview research with divers by exploring the published literature on breathing including books on regulating breathing that were 400 years old.  As James points out, many cultures over the centuries have focused on the art of breathing and its benefits, e.g. Buddhists use conscious breathing to reach higher levels of awareness and to achieve longevity.  The scientific literature reinforces the view that how we breathe can affect the systems of the body, e.g. our immune and digestive systems.   Some of the research, for example, showed that “asthma, anxiety and even hypertension, and psoriasis” could be reversed or reduced by changing the way we breathe.

James’ conclusion from all his research is that we can use conscious breathing “to hack into our nervous system and control our immune response and restore health”.  In his book , he sets about providing exercises to enable us to learn to breathe with intention so that we can reach our potential in terms of our mental and physical health.

Reflection

As I listened to the audiobook version of James’ book, Breath, I began to realise that intentional breathing as promoted by him could help me alleviate my MCAS difficulties – which are fundamentally a result of an over-reactive immune system.  Calming my immune system through the breathing exercises contained in each chapter of James’ book could enable me to expand my food options, which at the moment are severely limited because of my food sensitivity responses (such as rash, hives, headaches, and nausea).   

Many mindfulness teachers demonstrate that we can grow in mindfulness through conscious breathing which enables us to become grounded, calm the mind and body, expand our lung capacity and increase our focus and clarity of thinking.

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Image by John Hain from Pixabay

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

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