poem – Grow Mindfulness

To Care for Ourself is to Care for the World

Self-care is often considered to be narcissistic or self-indulgent in a fast-paced world where we have multiple responsibilities and ever-changing demands. However, the reality is that in caring for ourself, protecting ourself from burnout, we are able to give time and energy from a place of abundance rather than from depletion.

In a previous post, I wrote about strategies suggested by various experts on how to manage ourselves in times of overwhelm. The focus in that article was on the overwhelm resulting from external events and circumstances as well as from our own health situation such as chronic illness.

In a talk given for UCLA Health, Diana Winston focused on the internal causes of “overwhelm”, namely, our own self-stories and patterns of thinking and doing. Her talk, Taking Care of Myself I Take Care of the World, focused on what we can do to redress the frenzied state of our lives as we endlessly pursue multiple conflicting goals. Diana stressed the need to prevent personal overwhelm, exhaustion and burnout and offered strategies for addressing this modern-day challenge.

The internal messaging that drives us

We might be caught up in activism over climate change, addressing issues of domestic violence or working to help redress the growing levels of homelessness. We might think that we must be doing something to help those in need and cannot rest until these needs are met. Diana cautious us that working in a frenzy is not going to enable us to make a “long-run, sustainable contribution”. She argues that if we are operating from “depletion”, we cannot give to the world in a “real and meaningful way”.

Diana quoted Thomas Merton who talks about self-violence when people over-commit in the face of conflicting demands. He argues that “frenzy” depletes our inner peace and “kills the root of wisdom that makes work fruitful”. This raises the question as to why we work in a frenzy when such a state destroys both the rewards and productivity of our work.

Diana suggests that sometimes this need to help everyone and “commit to too many people” comes from a sense of self-identity, needing to do something compassionate to feel validated. It might also be that it makes us “feel okay” if we are doing something to help others, we feel useful and not “empty” or useless. Diana acknowledged that in an early period of trying to help everybody all the time, she was working from a sense of feeling “not enough”, her inner voice was critical of her output.

Meditation and reflection to reverse frenzy

Thomas Merton argues that “we are so obsessed with doing that we have no time and no imagination left for being”. Diana maintains that we can recapture our sense of being-in-the-world through meditation and deep reflection. In the process we can unearth our negative patterns of thinking and gain clarity about the way forward for peace and productivity.

Diana argues for scheduling “a time of not-doing” in our diaries so that we can become less frenzied and less focused on doing. We can change our attitude from “running out of time” to expanding our time through delegation, asking for help and learning to act more productively and calmly by devoting some time to self-care. We can then contribute to the world through “overflow’, rather than depletion.

Diana also argues for the process of self-resourcing, building “positive states of mind” through pleasurable activities. This can involve forest bathing, meeting with friends, spending time in our garden, journalling, blogging, and engaging in compassion practices. We can imagine beautiful places that have brought us joy or revisit activities such as pickleball that offer enjoyment and fun. Tai Chi, meditation-in-motion, is another way to replenish our inner resources and develop our overall health and fitness.

When we don’t care for ourselves

When we get consumed by our work and frenzied activity we exhaust ourselves and operate from a state of depletion. Burnout, for example, causes depletion on the physical, mental and spiritual levels. We become tired and exhausted, overly negative and cynical and lose a sense of meaning in what we are doing.

Diana points out that we can’t give to others from this state of “emptiness”. Self-nurturing can rebuild “our bathtub” so that we can offer service and help from a state of “surplus” rather than deficit. When we are in deficit, every small challenge appears large and adds to our depletion. We become short-tempered, impatient and critical of others. So many things are seen to “stand in our way”.

Diana suggests that The Nap Bishop, Tricia Hersey, has a lot to offer through her focus on rest and relaxation. In her book, Rest Is Resistance, Tricia promotes the idea of napping, being prepared to say “no” and upholding personal boundaries as ways to “free yourself from the grind culture and reclaim your life”. She argues that in this approach lies true liberation and justice.

Reflection

When I think about self-care, what immediately comes to mind is my weekly glass of wine that I have to relax and wind down from the week. I rationalise this aberration from my diet on the grounds that it helps me focus away from work and is restful. However, with my chronic illness of MCAS, drinking alcohol is not self-care but self-harm. When I really reflect on what alcohol does to my body and mind, I have to ask myself, “Why do I persist in having my one glass a week when I know it is injurious to my health?”

As I grow in mindfulness through meditation, reflection and mindfulness practices, I can gain a greater insight into what drives my behaviour and develop the courage to create change so that self-care becomes a priority.

As part of this reflection, I wrote the following poem to help me unearth my thought patterns and reframe wine as self-harm, not self-care. Wine can no longer be viewed by me as a reward – it is a source of harm.

What is There About Alcohol?

What is the attraction?
like light to a moth.

It hurts my head,
makes my throat sore.

It damages my stomach,
strains my liver.

It aggravates my arthritis,
disturbs my sleep.

The pain outlasts the pleasure,
a mythical creation.

Is it for companionship?
Is it for conformity?
Is it for comfort?
Is it for control?

What do we see in this delusion,
where are the rewards?

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Image by Niels Zee 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.

Discovering Pickleball – An Alternative to Tennis

I never thought I would be writing a post that elevates pickleball to a similar level as tennis. As a “tennis tragic” I thought that pickleball was not the “real thing” as it is played on a court the same size as badminton and is promoted as a mix of this sport together with table tennis and tennis. It clearly hasn’t the depth of traditions of tennis and the great battles of the Grand Slams and Davis Cup matches. My disparagement of pickleball was shared by many in my tennis fraternity.

Necessity is the stimulus for innovation and a mind shift

I found as winter progressed again in Brisbane that the arthritis in the middle finger of my playing hand had worsened to the point that I had difficulty holding my tennis racquet and playing tennis caused a lot of pain. Added to this, was the ever-present threat of exercise asthma caused by exertion in the cold air (I take a couple of puffs of my inhaler before playing to prevent an asthma attack occurring).

The arthritis in my finger makes it difficult to execute my tennis shots with any consistency to the point that the attraction of experiencing competence in the game of tennis is diminished considerably and is replaced by frustration at not being able to execute what I have been able to do previously without difficulty. The arthritic condition of my finger is aggravated by “allergic arthritis” brought on by my MCAS chronic illness.

I have not been able to use my first serve in tennis for a number of years as it puts too much pressure on my weakened back. A recent diagnosis of multilevel disc degeneration in my spine has made this even more critical.

Ageing and pickleball

As I age, I lose speed in my reflexes, stamina in my body, strength in my arms and legs and overall fitness. While I use walking, stretch exercises and Tai Chi to offset these diminishing physical capabilities, there is an inevitability about the downward trend owing to wear and tear over many years.

The experts in ageing tell us that we can prevent the onset of dementia by physical and mental activity, especially by learning new skills that involve a cognitive component. For tennis players, pickleball requires a new language (paddle instead of racquet, dink instead of a drop shot) as well as new rules. New rules to learn for pickleball doubles include:

You have to be serving to earn a point
With the exception of the first serve of a game, once one server (Server 1) loses a point, their partner (Server 2) starts serving until they lose a point (then serving reverts to the opposing team)
For the first serve of the first game, the first server is treated as Server 2 and once they lose a point, the serve immediately reverts to the opposing team (this can be difficult to get your head around!)
You are not allowed to volley in the “Kitchen” (an area seven feet from the net which exists on both sides of the net).
You have to serve underarm
Double bounce rule – the server must let the return bounce before hitting the ball (unlike tennis where you can volley a service return).

While there are competitions and international tournaments dedicated to young pickleball players, there are distinct advantages of pickleball for older people. These advantages include:

It is not as physically demanding as tennis
There is a strong social element to the game (if you do not play competition)
There are protocols for frequent rest breaks/drink breaks
The rotation system enables at least an eleven-minute break (the length of a game) when your time off the court arrives
You can take advantage of your competencies in other racquet sports acquired over the years
The Kitchen rules re volleying “keeps the athletically and physically superior from dominating the game”
It helps to maintain fitness and the motivation to keep fit
The underarm service action places a lot less pressure on your back in comparison to the overhead motion of a tennis serve. (This has proved important for me as a recent diagnosis of neuropathy led to the discovery of multilevel disc degeneration in my spine.)
Provides a chance to meet new people and extend your social network
It can be played at various levels ranging from social to Advanced (competitive and tournament play); “social” means social. As one Pickleball trainer/coordinator explained – in social pickleball you are meant to play to the level of the opposition (e.g. withholding more advanced shots when playing beginners) – an ethos rarely shared in social tennis.

Using pre-existing skills and competencies

One of the attractions for me in pickleball (being a new arena for me) is the opportunity to try out different shots each time I play. Unlike a tennis racquet, the pickleball paddle does not have strings and the ball comes off the paddle differently to a tennis racquet. While you may have competencies in spinning, volleying, lobbying and smashing from playing tennis, you have to make adjustments when using a pickleball paddle with a plastic ball.

The bounce of the ball is very different and requires a lot of knee bending. However, the challenges associated with a new “bat” and ball make it necessary to make adjustments to playing shots and to learn new skills.

Existing tennis skills such as anticipation and preparation can stand you in good stead when playing pickleball. You can also draw on different spins you have mastered such as topspin, backspin and slice. For those who have mastered the two-handed backhand in tennis, there are pickleball bats with an extended grip to enable two-handed shots.

Competency in devising game strategy is transferable from tennis to pickleball. For example, tennis drills designed to develop skills in controlling the net in tennis doubles can be drawn on when playing pickleball. This could involve drop shops (dinks), or playing the ball long, sliced or angled to place an opponent at a disadvantage. Other tennis drills associated with playing the ball down the line can come in handy in pickleball as very few people use (or able to use) this strategy in social pickleball.

Reflection

In a previous post I explained how tennis can help us to grow in mindfulness by developing our focus on the present moment, improving our capacity to pay attention, increasing our ability to act with intention and strengthening our resolve to “accept what is” (both our mental and physical capabilities at the time and those of our playing partner and opponents). Likewise, pickleball can provide growth in mindfulness as a rich fringe benefit, especially when we play socially and choose, on purpose, to play at the level of our opponents.

I have also shared how I have found that Tai Chi, as a regular mindfulness practice, can develop tennis competence by improving concentration, coordination, reflexes and the ability to tap into heightened insight and instinctive responses embodied in body memory. I’m discovering that this is true also of pickleball as I unconsciously access tennis skills developed over many years of tennis practice and playing.

In reflecting previously on my tennis game and skill, I wrote a poem called, For the Love of Tennis. Reflecting on my discussion of pickleball, I have now developed an Ode to Pickleball titled, For the love of Pickleball.

For the Love of Pickleball

Pickleball can be playful and fun:
Accessing our childlike creativity,
Building partner relationships.

It can promote growth:
Learning a new language, rules and skills,
Growing in mindfulness and sensitivity.

It can develop competence:
Using new tools in different ways,
Experiencing joy in execution.

It can enhance fitness:
Using new muscles,
Increasing motivation to stay fit.

Pickleball for quality of life and longevity:
Learning, laughing and enriching,
Moving beyond limited mindsets.

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Image by Nils 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.

Using Bodily Sensations as an Anchor for Mindful Walking

Diana Winston, Director of UCLA Mindful, introduced the idea of bodily sensations as an anchor in meditation. As she was specifically explaining standing and walking meditations (in lieu of sitting meditation), she focused on the sensations in our hands, our legs and our feet.

Diana’s guided meditation podcast was one of the free, weekly podcasts offered by meditation teachers at UCLA Mindful. At the outset, she explained the concept of an anchor in meditation.

Diana asked us to envisage a ship’s anchor keeping a ship in place despite being buffeted by winds and tidal surges. The analogy means that a “meditation anchor” serves to help us maintain our focus despite being “buffeted” by our thoughts and emotions. Just as a ship is surrounded by water, we are immersed in our thoughts and emotions – a fact of life that is inescapable.

The secret power of meditation is the capacity to constantly return to our focus despite ongoing distractions and our anchor supports this process. Over time this capacity builds concentration and resilience as we develop the ability to deal with “negative self-talk”, difficult emotions and the vicissitudes of the human condition.

A standing meditation

Diana suggested that we explore a standing meditation by slowly shifting our weight from one foot to the other. She pointed out that a lot of our functions such as standing and walking are performed unconsciously. Meditation involves paying attention to specific functions/activities as they occur and, in the process, exploring the bodily sensations that occur with a sense of curiosity and openness. It also involves accepting things as they are, e.g. accepting an inability to stand for longer than two minutes or unevenness of our posture due to a spinal injury.

As we shifted from one foot to the other, Diana asked us to pay attention to the sensations in our legs and feet. We can notice the added pressure on one foot as we move our weight from the other foot. We can notice tightening of the muscles in the weight-bearing leg . As part of the process of a standing meditation, we can effect a progressive focus on each of the muscles in our leg and then focus on the sensations in our foot. There could even be the experience of muscle spasms or cramping. Diana encourages us to undertake the standing meditation being conscious of our physical limitations, e.g. if we are unable to stand without pian, then a sitting meditation is a better option.

A walking meditation

A walking meditation involves walking slowly while being conscious of the physical sensations as we raise and lower our feet. It takes considerable discipline to slow down enough in our hectic world to pay attention to minute bodily sensations. However, the act of mindful walking can create a sense of calm and peace if we maintain the focus on our anchor.

We can also add surrounding sounds as an additional focus. On my morning walks in another area, I used to listen to the call of birds that were in bushes above, below and beyond me. This focus enhanced the practice of mindful walking for me.

In previous posts I have detailed approaches to mindful walking inside and mindful walking outside. The latter approach can incorporate awareness of all the senses, a form of natural awareness.

Reflection

Through much of life we hasten to get somewhere or to achieve a goal, e.g. a fitness goal as we walk or run at pace over a specified distance. Mindful walking helps us to become more conscious of our surrounds and our bodily sensations. The process enables us to slow down, detach from our goal-oriented behaviour and build our capacity for natural awareness, being in nature with curiosity and wonder.

As we grow in mindfulness, we can enhance our self-awareness, build our concentration and capacity to focus, develop emotional regulation and experience equanimity. The following reflective poem, that I wrote as I developed this post, communicates something of the magic of mindful walking:

Mindful Walking

Slowly walking seeing what surrounds us,
Sounds surfacing from hidden spaces near and far,
Sensations seeping into our consciousness.

Anchored in our body,
Mindful of our sensations,
Calm and peace pervade.

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Image by 춘성 강 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.

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.

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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.

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:

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.

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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.

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.