poem – Grow Mindfulness

Celebrate the Small Things in Life

In our May online Meetup of writers-with-chronic-illness, Jennifer Crystal introduced a poem by Lucile Clifton titled, “Won’t You Celebrate With Me?”. The poem was made more poignant by a video presentation of Lucile reading her poem to an audience. In the poem, Lucile talks about her life as a woman who was non-white and who had to shape her life without models, simply by being true to herself. She asks us to celebrate with her that “every day something has tried to kill me and failed!” Lucile is noted for her comment, “One should wish to celebrate more than wish to be celebrated.”

Lucile’s message is to celebrate the simple things in life – that we are alive, have an identity shaped by our background and life experiences, and have the opportunity to be true to ourselves whatever our life’s work may be.

Writing process

Participants in the Creative Meetup group were encouraged to write their own reflections beginning with the words, “won’t you celebrate with me?” In the sharing of reflections, people identified simple things in life to celebrate – that they woke up, were able to walk, could appreciate nature, showed courage despite their pain and fears, maintained hope despite the daily setbacks, and managed the unexpected.

People expressed appreciation of light and dark, the rhythms of life, and the opportunity to slow down and be calm. Other simple things in life that were celebrated in the group included receiving a thank you, listening to birds and raindrops, being able to breathe and seeing the sunrise and sunset.

Participants’ reflections were often expressed as poems. Jennifer pointed out that poetry enables “a larger story in a concentrated space”. This was particularly true for one participant who expressed anger at having to endure delays in medical diagnosis and treatment. There are times when people with chronic illness feel that the medical system “works against them”.

Celebrating the small things as we age

Carol Lefevre in Bloomer, her memoir about aging, wrote about the challenge of dealing with ageing and the discrimination of ageism, particularly against women. She concluded that ageing is a “necessary adventure” and her way to achieve wellness during this late phase of her life (turning seventy), was to become “settled in to a pattern of thinking, reading and writing” – a simple pattern of being-in-the world that is congruent with her age (she writes “what only an old woman can write”).

Carol contends that we can flourish in late-life if we embrace life “as it is” when we age. We can flourish through our creative pursuits, particularly through writing and gardening. She stated that her strategy to deal with the challenges of aging is “to retreat in to the garden”. Carol noted that the fluidity and rhythms of nature serve as a calming influence in the face of “the relentless press of daily life”. Hope is embedded in gardening because it is “a forward-looking pastime” that promises a return in the future on the investment of time and energy.

The simple act of being with nature

Research has repeatedly confirmed the healing effects of nature. Nature’s solitude and silence can create a pathway to self-awareness and resilience. Nature reminds us of our interconnectedness and our co-dependence. Being with nature involves more than being in it; being-with-nature entails opening our senses to the wonder and awe of nature. We can listen to the rustling leaves and the birds (near and far); observe the colours of the trees and flowers; smell the earth and rotting vegetation; touch the vast array of textures surrounding us; and taste the fruits of the forest.

The Japanese have mastered the art of “forest bathing”, walking slowly and mindfully through a forest. A forest can highlight our senses, boost our mood and evoke stillness and resilience. Trees can be a source of meditation, reflecting the enigmas of daily life and reinforcing the transitory nature of human beauty. They can ground us in the simple things of life such as the air that we breathe and the ever-changing foliage that encompasses us.

Carol found solace in gardening because there is “a timelessness to the routine tasks of weeding, digging, planting”, and the fruits of today’s labour remind us of our forebears engaging in these same flourishing activities (including monks of old who planted and harvested herbs and other edible plants). She contends that this connectedness to the past is both grounding and calming and “gently draws attention back to the present moment”.

I find that playing tennis likewise grounds me in the present moment and helps me to develop mindfulness. In my poem For The Love of Tennis I acknowledge this groundedness and savour the simple things of being able to “run, bend, stretch and strain” and to experience again “the slice, the serve, the stroke, the sound”.

Reflection

Jennifer noted that in the Creative Meetups participants shared their vulnerability and strong emotions and were supported by people “holding space for each other” and listening compassionately. Louise DeSalvo reinforces the healing power of storytelling in Writing as a Way of Healing: How Telling Our Stories Transforms Our Lives. She offers practical advice and tips for “restorative writing” – “writing as a way to heal the emotional and physical wounds that are an inevitable part of life”.

I found when people were sharing their writing that I became “teary”, not only because of the evocative writing that was shared but also the pain and suffering. I found that I was feeling for, and with, the person who was sharing – an empathic response.

Following the sharing, Jennifer asked us to write a process journal entry where we wrote about “what it felt like to write [tonight] and listen”. Participants indicated that they were sharing things in the group that they would not share outside the group – a sign of growing trust and mutual respect with the Meetup group.

In writing the process reflection, I found that my strong empathetic feelings tended to mask my own uncomfortable feelings of anger and frustration at the members of the medical profession. I’ve continually encountered the failure of a medical practitioner to listen to what I was sharing before jumping to a solution based on their personal orientation and training. The result has been inadequate treatment and ongoing problems with MCAS and related allergies. I had to find out for myself, for example, that wheat allergy can lead to “exercise-induced anaphylaxis” if I “exercise within a few hours after eating wheat”.

Writing a process journal entry is a form of “writing slow” which is highly recommended by Louise DeSalvo as a means to deepen our creativity and reflection.

By focusing on the small things in life, along with reflection and writing, we can grow in mindfulness and, in consequence, build self-awareness and creativity to manage our lives more peacefully and productively.

In the following reflective poem, written during the May Meetup, I share something of my thoughts about the power of writing poetry:

Poetry for Peace

Searching for a food I can eat
Like a fox foraging in the forest.
Tantalising sweet taste sensation
Transforming into testing torture.

Poetry creating peace through pain,
A place for planning and pleasure.
Opening up options for optimism,
Resolving to reframe for resilience.

Control is within, not without,
Choice to contract, not expand.
Accepting the constraints on food,
Exploring freedom to flourish.
______________________________________

Image by Kev 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:

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.
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.
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.

___________________________________________

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.

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.

___________________________________________

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:

Write about a time when you felt brushed off and what you wished that person could have seen on the inside, or
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.

___________________________________________

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.

__________________________________

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.

Autumn: A Time for Reflection and Shedding

The Health Story Collaborative sponsors a monthly, online Creative Meetup for people anywhere in the world who are experiencing chronic illness or disability. The Meetup via Zoom is facilitated and is designed to enable participants to spend time writing while in a supportive community and, in the process, “to access and release our emotions, personal stories, and creative spirits”. The Health Story Collaborative was created by Dr. Annie Brewster, author of The Healing Power of Storytelling: Using Personal Narrative to Navigate Illness, Trauma and Loss.

During our Creative Meetup session in September, Jennifer Harris (our facilitator) guided us in reflecting on Autumn and the significance of the season in terms of harvesting and shedding. By way of stimulus, Jennifer quoted Mary Oliver’s Fall Song and the words of F. Scott Fitzgerald, “Life starts all over again when it gets crisp in the fall”. This led to a session for our creative writing around the themes of “harvesting” and “shedding”.

Autumnal reflections

The four seasons of the year are often used to represent times of transition. Vivaldi’s Four Seasons – “four violin concerti giving musical expression to a season of the year” – epitomises the seasonal transitions we can observe in temperature, the migration of birds, changes in landscapes and in human behaviour. Autumn is associated with harvesting, the gathering of food and growing fur by animals to prepare for the impending winter and significant temperature/weather changes. Many cultures celebrate the arrival of autumn with rites and rituals, especially the Autumnal Equinox (when day and night are equal in length) occurring at the start of Fall (Autumn).

Autumnal rites and rituals often signify change and harvesting. In Japan, the National Autumnal Equinox holiday is a time dedicated to paying respect to “deceased parents, grandparents, and other family members”. In India, Autumn is a time of cleansing. There are various rituals involving shedding to reflect the falling of leaves and regeneration during this season.

Reflections on harvesting

Harvesting is a time of reaping what you have sown. Our reflections focused on the metaphorical meaning of harvesting in terms of abundance or achievements realised throughout the year. We were asked to reflect on blessings we experienced, tending/nurturing received, projects accomplished, and personal growth. Associated with these reflections was encouragement to express gratitude for what we had harvested in our personal life.

I noted the following in terms of my “harvest” during the 2024 year:

Joined the Creative Meetup group of the Health Story Collaborative and participated in the monthly sessions
Integrated the themes and discussion of the Meetups into my blog posts
Wrote poems that reflected the themes of the Meetups and related blog posts – giving creative expression to my feelings
Conceived and structured a book on management – for co-authoring with my colleague (co-facilitator of 80 longitudinal manager development programs, conducted over 16 years)
Organised a publisher for our book and signed a contract for assisted self-publishing
Completed the first draft of 20 chapters of our book on management
Wrote the following posts exploring ways to express gratitude and sharing my gratitude for what I have experienced and am experiencing:

In our discussion of harvesting we acknowledged that it was okay to “harvest less”, given that all participants in the Meetups are people suffering from chronic illness or disability who often experience setbacks in their recovery.

Reflections on Shedding

During autumn we can observe the trees and plants shedding their leaves and fertilising the soil with the decaying material – death generates new life.

There are many things that we can shed if they are holding us back from realising our potential – e.g. identity, old beliefs or expectations. During the Creative Meetup I became aware of the unrealistic expectations I was placing on myself in terms of output for my co-authored book on management. The expectations were not coming from my co-author who is currently consumed by her caring role for an ill relative. The expectations are my own – setting a timeline and trying to determine a daily output.

What I realised is that my personal output expectations needed to be shed in the light of the continuous disruption I am experiencing in relation to health-related issues and medical testing. I have been losing momentum in my writing because of the continuous need to undertake important health-related tasks. I have to accept that this is my current situation and shed my expectations about high levels of output in my writing. I have already changed my expectations of the frequency with which I produce a blog post. However, to date, I have failed to adjust my expectations concerning writing my co-authored book.

My participation in the Creative Meetup with the focus on the autumnal shedding theme, highlighted the need for me to shed my current expectations about output for our book in order to create the freedom and space for other important things such as maintaining good health and my connections with family and friends.

Reflection – a poem

The seasons can help us to grow in mindfulness by enhancing our observation of what is changing around us and cultivating gratitude for what we have experienced and achieved. Autumn promotes reflection on what we have harvested and what we need to shed. I wrote the following poem to reflect the process of shedding:

Autumnal Shedding

Autumn leaves falling softly
Silently seeking the soil.
Shaken from their anchor
Shrivelled, shrunken, distorted shapes.
Shedding, signalling rebirth
Death begets new life.
New growth, new possibilities
Transcending the past.

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Image by Sven Lachmann from Pixabay

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

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

Deprivation Can Engender Gratitude

We take so much for granted – that we can breathe, walk, talk, see, and hear. Deprivation makes us aware how privileged we are to have these functions and other functions such as choosing what we want to eat, achieving basic elimination functions with ease or being able to write or key (not encumbered by arthritic pain and distortion). The recent Reversing Mast Cell Activation and Histamine Intolerance Summit 2.0 brought home the stark realities of how Mast Cell Activation Syndrome (MCAS) and/or histamine intolerance can impact the quality of our life.

As I listened to various expert speakers who themselves had experienced these conditions, I became more aware of what I do have in terms of quality of life and daily functions. Some of the speakers had periods when they were super-sensitive to smells (such as the perfume of their daughter), unable to eat a wide range of foods because of allergies) or were sensitive to mold in their homes. Others spoke of the symptoms of histamine intolerance and the impact this had on their daily life and their capacity to choose what they would like to eat.

Hope and social support

Parental and social support build hope and agency and enable people with chronic illness or disability to rise above their health challenges and achieve a successful recovery, often beyond peoples’ wildest dreams.

Alexa Leary’s story – from tragedy to triumph

The recovery story of Alexa Leary, Australian Paralympic Swimmer destined for Paris 2024 Olympic Games, is a hugely inspiring account of how parental support and social support have helped her to achieve her goals. Three years ago Alexa had a very serious accident on her bike as a world-class triathlete – causing traumatic brain injury and multiple other significant injuries. She was not expected to live, and, even if she did survive, she was not expected to be able to talk or walk. Alexa’s parents set aside their own lives and spent six months by her bedside in hospital to support her recovery.

Alexa’s rehabilitation efforts are starkly illustrated in the video story, Triumph Over Tragedy. Her incredible sporting accomplishments since the accident reinforces the value of the social support she received from organisations such as the global Pho3nix Foundation, dedicated to helping young people through sport and activity to develop a “sense of purpose, focus and possibility”. Alexa was a participant in their Athlete Program designed to enable underfunded, aspiring Paralympics and Olympic athletes to compete in the Olympic Games. When sharing her story of recovery through radio, television and social media, Alexa emphasised the critical role music played in her life and recovery.

Specialised Support through ADDA

Duane Gordon, President of Attention Deficit Disorder Association (ADDA), elaborates on the benefits of social support and shares multiple stories of how ADDA’s many support groups have facilitated the recovery of its members. Tom, an accomplished engineer, experienced overwhelm in everyday tasks such as shopping but was able to gain support and ADHD-friendly strategies through ADDA’s Healthy Habits and ADHD Brain Group. People with ADHD typically experience relationship difficulties but ADDA’s support group Loving and Living with ADHD: Partners Connecting helped Mark and his partner to rise above the challenges of this condition and strengthen their relationship. ADDA’s support group, ADHD @ Work> Survive and Thrive Support Group, helped James recover from the loss of his job caused by ADHD challenges such as confusion, meeting deadlines and remembering tasks.

Reflection

I was recently diagnosed with early stage, normal tension Glaucoma which has reduced my peripheral vision. I am undertaking a series of tests to determine what the cause is and what kind of treatment is required. The diagnosis has forced me to face the prospect of increased loss of sight, retraction of my driver’s licence and loss of the associated independence. The social support provided by the Creative Meetups, sponsored by the Health Story Collaborative, is particularly critical at this point in time.

I wrote the following poem as a way of reflecting on my present circumstances with the possibility of increased loss of vision:

Losing Sight

Sight lighting my way,
expanding my horizons,
disclosing people and cultures,
revealing nature’s beauty,
enabling enjoyable activity.

Playing a game of tennis,
writing a book,
driving a car,
watching a video,
reading a book,
creating a poem,
developing a blog.

Encroaching blackness,
moving in from the edges.
Losing sight a real prospect.
Rescinding of independence.
Storing recollections for future reference.

A long-playing internal videotape,
of my best tennis shots,
played over the years.
Now categorised by tennis stroke –
forehand, backhand, volley, serve and smash.

A rich palette of memories of nature’s beauty –
blue and white, purple and brown,
red and orange, yellow and green,
grey and black.

Moving from sight to sound,
from reading to listening,
from writing to recording,
from driving to walking.

Feeling my way.
Testing to understand.
Exploring my options.
Appreciating what I do have – while I have it.

As we grow in mindfulness through reflection, meditation and time spent in nature, we can increase our appreciation and gratitude, fortify our hope and strengthen our resilience.

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Image by Shan 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.

On Being Deaf

Jessica Kirkness in her memoir, The House With All the Lights On, lets us see and hear what it is like to live with grandparents who are Deaf. Her story covers her experience of living under the one roof with her parents and grandparents and coming to understand the “language of light”. In the process, Jessica enlightens us about what it means to be deaf and how to interact with adults who are deaf.

Jessica’s grandfather spent a lot of time in and out of hospital. She highlighted the problem of a lack of understanding on the part of hospital staff despite being told of her grandfather’s deafness. She maintained that his hospital care was often compromised because “staff had no clue how to interact with him”. This was despite explicit instructions to get his attention before speaking to him, use pen and pad to enable him to understand their message and respond and ensure they actually looked at him when talking.

Jessica herself had studied Auslan (Australian Sign Language) to communicate with her grandparents, particularly with her Grandfather who refused to learn how to speak. She even had to use sign language to communicate to him in hospital that he was dying after a cardiac arrest. Jessica provides an enlightening insight into sign language and its accompanying “visual and spatial tactics” generated by the hands and body movement. She explains that movement serves to direct the viewer’s attention.

Being deaf

Jessica makes the point that, contrary to the general opinion in the community, her grandparents viewed their deafness as a “way of being in the world”, not a deficit (the focus on something missing). They were able to recognise nuances in facial expressions and insisted that everyone faced them directly when they talked to them. This enabled them to expertly read faces and attempt to lip read.

Jessica points out at one stage in her book about the lipreading traps inherent in the English language. She explains that this is the result of what is called “homophemes” – “words that sound different but involve identical movements of the speaker’s lips”. The words themselves have different meanings, leading to confusion and stress for the lip reader.

Discrimination

Jessica quotes Rachel Kolb’s TED Talk, Navigating Deafness in a Hearing World, when she discusses the “primacy of voice” in our hearing world and the fact that “mouths are not a prerequisite for speech”. Rachel makes the salient point that if you can’t hear, how can you learn to speak? She was born profoundly deaf and has become a Rhodes Scholar, writer and disability advocate.

Rachel knew that her speech was defective and had to come to terms with her difference. She spent 18 years in speech therapy to be able to talk, spending a lot of time learning speech through feeling the vibrations in the throat of her speech therapist. Still people thought that her difference in speech was due to a foreign accent.

Jessica highlights the discrimination experienced by her grandparents in what is a “hearing world”. People expect to be understood when they speak (“being heard”, “being listened to”). The distortions in the speech of many deaf people lead to misunderstandings and assumptions about “lack of intelligence” or dumbness. Jessica states that “deafness is the thing that we cannot look away from but cannot bear to face”.

The disruption and disorientation of deafness in a hearing world is not understood and sometimes feared. People lack an appreciation that a deaf person can have a heightened sense of sight and an enhanced peripheral vision (so that actions “behind their back” can sometimes be detected and seen as derogatory). People who are deaf often have a strong sense of touch and vibration. As Jessica remarks, “sound is received in the body in all sorts of ways” and people who are deaf can “hear” music through vibrations in the floor. I had personal experience of this in Melbourne when a group of us visited a school for deaf children and watched them dancing enthusiastically to music by sensing floor vibrations.

The language of light

Jessica’s Grandmother insisted that ‘the entire self is required for conversation”. She could not tolerate people turning away from her when listening to what she had to say. Jessica does point out, however, that the exception to this “whole-self rule” was when she was driving. She notes too that “touch and sight were always interwoven” for her grandparents. The world for them was “experienced through the interplay of the eyes and body”.

Consciousness of light was important because being in front of windows when communicating could create shadows that distort the images of hands and faces. The world of deaf people is “driven by sight” where looking is equivalent to knowing. Gerald Shea titled his book The Language of Light to express the role of light in sign language and the centrality of the visual for the deaf. When the lights go out there is no dialogue.

Reflection

Jesscia’s book helped me to understand how easy it is to unconsciously exclude a person who is fully or partially deaf. It reminded me that I have a friend in her eighties who is hard of hearing and I often overlook the need to face her when I talk. She points out that being able to speak multiple languages, she has developed a propensity for lipreading – something I deprive her of when I am not facing her. She often notes too that I “mumble”, failing to properly articulate my words which increases her sense of isolation.

By gaining an understanding of what it is like being deaf, we can learn to better include deaf people by more conscious speech and actions. As we grow in mindfulness, we can increase our awareness of people’s differences, our own limitations and biases and be more compassionate in our interactions with others.

Having been considerably moved by Jessica’s book, I wrote the following poem from the perspective of someone who is deaf:

Being Deaf

Being deaf is not a deficit
It’s a way of being in the world.
With refined senses of sight and touch
A reliance on light for meaning.

Face me so I can read your lips
Be in the light so I see the nuances in your facial expressions.
I am not dumb, I am deaf
I sense sound through vibrations.

While I can’t hear
I can see and feel things that you don’t notice.
My vision is not narrow
I can see my periphery clearly.

Don’t avoid me out of fear
Approach me out of curiosity.
Don’t judge me for my voice distortions
Listen intently for my message.

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Image by Ivana Tomášková from Pixabay

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

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

The Healing Power of Social Support

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

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

The benefits of social support

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

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

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

Reflection

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

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

Social Support

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

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Image by John Hain from Pixabay

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

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

Paternal Forgiveness – A Reflective Poem

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

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

Paternal Forgiveness

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Image by Gerd Altmann from Pixabay

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

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