Awareness – Grow Mindfulness

Exercising Agency When Living with a Chronic Illness

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

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

How to develop agency as a writer with a chronic illness

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

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

Developing agency through research and education

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

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

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

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

Exercising agency in our recreational activity

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

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

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

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

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

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

Reflection

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

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

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

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Image by yoshitaka2 from Pixabay

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

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

How to Write with a Chronic Illness

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

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

Challenges for writers with chronic illness

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

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.

Adopting a Holistic Approach to MCAS and Histamine Intolerance

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

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

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

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

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

The increasing medical complexity of chronic illness

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

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

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

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

A holistic approach to MCAS and histamine intolerance

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

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

Addressing Root Causes of MCAS

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

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

Consuming the Right Foods and Supplements

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

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

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

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

Supporting the wiring of the body

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

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

Reflection

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

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

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

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

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

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

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Image by Gerd Altmann from Pixabay

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

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

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.

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.

The Trauma-Disease Connection – Lessons Learned

Dr. Aimie Apigian recently conducted a masterclass on the theme, How to Help the Body Live, Love and Let Go. Her guest speaker for the interactive session was Dr. Gabor Maté, world-leading trauma physician and author of In the Realm of Hungry Ghosts: Close Encounters with Addiction. Together they shared their clinical experiences and research and highlighted the lessons learned about the trauma-disease connection.

Gabor highlighted the impact of trauma on the body, reflecting the unity of mind and body. He emphasised that the body is inseparable from all aspects of human existence, including the ecological and social environment. He maintained that his new book, The Myth of Normal, provides insight into the lessons he has learned from “working with trauma in the body”. In writing the book he also drew on thousands of articles and newspaper reports.

Gabor contends that everyone has experienced some form of traumatic experience and that trauma embedded in the mind and body contributes to chronic illness. In his view, healing begins with waking up to the body’s sensations as well as to “what the mind is suppressing”. It is increasingly acknowledged that trauma is not the precipitating experience/event itself but the negative impact on a person’s mind, body and emotions – how the experience/event is internalised.

The early experience of Aimie

In responding to Gabor’s question about what motivated Aimie to study diverse medical fields and to get into trauma healing, she told the story of her early experience in adopting 4 year old Miguel from the foster care system. He had extreme behavioural problems and in his rages would try to kill Aimie. Caring for Miguel and undertaking her third year residency as a doctor resulted in “severe fatigue”. It was then that Aimie came across Gabor’s book, When the Body Says No: The Cost of Hidden Stress – the title of his YouTube presentation where he discusses the trauma-disease connection resulting from the unity of mind and body.

Aimie’s response to her own trauma-induced health issues was to try to understand Miguel’s behaviour and her own mind/body response. She undertook training in trauma healing and somatic healing through her functional medicine studies. Aimie also completed master’s degrees in biochemistry and public health as well as “specialized training in neuro-autoimmunity, nutrition, and genetics for addictions, mental health, mood, and behavioural disorders”. Her book on The Biology of Trauma looks at trauma’s impact at the cellular level and explores approaches to holistic healing from trauma. The title of her book is also the theme of her podcasts and the focus of her training for other health professionals.

Trauma’s impact

Both Aimie and Gabor stressed the holistic impact of trauma on a human being. They described how someone who has experienced trauma develops a disconnection from themselves and their bodies. In their view, trauma leads to a degeneration of the nervous system, a loss of energy and emotional issues such as depression and anxiety. They point out that the various systems of the body are interconnected and interdependent – so trauma can affect the gut, the cardio-vascular system and the emotional system.

Reflection

As Aimie points out, trauma may result from adult experiences, not just adverse childhood experiences. She emphasised that given trauma’s influence on the whole person – body, mind and emotions – a range of healing modalities may be necessary. For this reason she has undertaken extensive trauma training including Somatic Experiencing, Sociometric Relational Trauma Repair, NeuroAffective Touch and the Instinctual Trauma Response Model.

Mindfulness has a key role to play in healing from trauma. As we grow in mindfulness, we can calm our nervous system, reduce our negative self-stories, get in touch with our bodies and build the resilience to restore our health – thus, gradually breaking the trauma-disease connection.

Aimie offers a 6 week online program, The Foundational Journey, designed to provide a safe way to open up “stored trauma”. The evidence-based program has a strong emphasis on the mind-body connection and provides tools that include somatic healing.

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Image by Daniel R 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.

Paying Attention to the Spaces Between

Chris Willard provided a 12-Minute Meditation podcast on the 15 August this year on the theme, A Meditation to Notice What’s Present and What Isn’t. He noted that spaces are everywhere if we look and by paying attention to the “spaces between” we can grow in awareness of what is around us as well as what is missing. Focusing on the spaces between grounds us in the present, enables us to see the potentiality in spaces and heightens out powers of concentration. Bringing our awareness to these spaces enriches our creativity and deepens our appreciation of the magnitude of our world, the beauty of nature and the uniqueness of the people who are around us.

Chris Willard has a Doctorate in Psychology focusing on neuroscience and positive psychology. He is an author, practising psychologist and consultant, a trainer and faculty member of the Harvard Medical School. He specialises in teaching mindfulness to adolescents and young adults. Chris’ books are readily available on Bookshop.org and his online courses can be accessed on his website. He is the co-author with Olivier Weisser of The In-Between Book – designed as an interactive resource for children to develop mindfulness. Chris is also a public speaker and videos of his talks can be found on YouTube.

Guided mediation

Throughout the podcast, Chris guides us in a meditation process designed to increase our ability to pay attention to the “space between”, both internally and externally. At the outset he suggests that, after adopting a comfortable position, we focus on our breathing. This initial process involves concentrating not only on our in-breath and out-breath but also on the spaces between these – learning to rest in our breathing space between our inhale and exhale.

Spaces between objects in a room

As we progress with this meditation, Chris turns our attention to the spaces between objects in our room:

the shape of objects
the form of spaces between objects
the dimensions of those spaces
how frequently the spaces occur
the patterns of spaces – small, large, irregular
intentional or unintentional spaces
the sense of openness or closure
the visual impression of clarity or clutter.

Spaces between thoughts and emotions

Viktor Frankl reminds us that there is a space between a stimulus and our response and in that space lies our freedom – we can choose how we respond. Chris encourages us to explore this inner space:

what emotion arises with a thought?
what events have given rise to the link between the thought and the emotion?
how often do we employ the S.T.O.P. process to create space before we respond?
are we carrying resentment and its attendant adverse behaviours?
does our inner landscape reflect a stance of “victim or freedom”?
do we have space within for creativity, alternative actions/responses and creating meaning in our lives?

Spaces in nature

Chris is very conscious of the natural world and the spaces within. He encourages us to explore our external world by observing the spaces in nature:

between plants
between trees
between leaves
between gardens and lawns
between water and land
between clouds.

Associated with this noticing is paying attention to:

the shape and colours of clouds
the merging of colours in the sky – yellow into green, red into purple, light into dark
the changing shape and spaces on the horizon
the crowded space of a worm farm
the flight of birds and formations
the sounds of nature and the gaps between
the bird calls and delayed responses
the movement of the wind and the spaces it creates.

Spaces in our interactions with others

Everyday we are in interaction with people close to us, our colleagues, associates and strangers. We can become more conscious of the spaces between us and others by noticing:

how our assumptions and stereotypes leave no room for sustained engagement
how we listen by creating space for others to talk
the pace of our thoughts leaving no gap for deep listening
the absence of spaces in our interactions to truly get to know someone, their life history and their feelings.

Reflection

We can extend our focus on the “spaces between” by reviewing our day:

have we created space for reflection and review?
have we taken the opportunity to pause?
has there been time set aside for walking and/or exercise, adequate sleep and rest?
have we made time for a life review to protect our attention?

Our awareness of space can be shaped by cultural influences and environmental conditions. Often, we need to experience another culture/country to appreciate how we view the “space between”. Following a trip to France, I became so much more aware of my own spatial environment in Brisbane – the space between cars, buildings, people and cities, the openness compared to the “constriction”.

Shelley Davidow in her memoir, Whisperings in the Blood, describes how her grandmother found the environmental shift from America to South Africa disarming – “At night, Africa closes in around the house and bathes it in its foreignness”. Associated with this sense of restriction are the shrieks of nightbirds, grunting of hippos, and the “distant drumming and singing”. Her grandmother was overcome by the open spaces and the loss of “signs of human habitation and civilisation” – the city comforts, landmarks and buildings of various sizes and shapes.

As we grow in mindfulness by paying attention to the “space between’, we can enrich our lives and interactions, enhance our awareness of possibilities, and make room for innovation and creativity. Consciousness of space can improve both our mental and physical health – we can avoid being consumed by the busyness of our life and the endless negative pattern of our thoughts.

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Image by Albrecht Fietz 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.

Cultivating Gratitude Through Nature

Georgina Miranda facilitated a meditation on the theme of Awaken to the Flow of Gratitude in Nature. In her guided meditation on the 12-Minute Meditation podcast on 12 July 2024, Georgina takes us through a meditation practice that can be conducted anywhere in nature – it could be in our backyard, the local park, or our favourite place in nature. People typically have some favourite place where they experience nature – it could be at the beach, in the mountains or by a river or creek. Georgina encourages us to use nature to reset, to open ourselves to our unity with nature and to let a sense of gratitude flow through us as we experience its stimulation of our wonder and awe.

Georgina is an author, activist, mountaineer, transformation and leadership facilitator. She helps individuals and organisations globally to move beyond their comfort zone, expand their awareness and “shift mountains within themselves and the world around them”. Her activism focuses on protection of nature and our planet, and protection of women against violence. Through her social enterprise, She Ventures, she works consciously to “unleash the untapped potential of women around the world”, offering consulting, coaching and inspirational events designed to achieve self-realisation and effect positive global change.

Georgina herself uses nature, and especially her mountain climbing, as a way to move beyond life’s challenges and to achieve a different perspective on whatever is troubling her. For her, nature provides a “reset” – enabling a movement from emotional turbulence to emotional regulation and calm.

Guided meditation process

Georgina suggests at the outset that we take our place in nature – wherever that may be in terms of accessibility and convenience. She encourages us, for the purposes of this meditation practice, to avoid treating the activity in nature, e.g. walking, as an exercise (an act of “doing”) but as a mindful moment (an act of “being”). The focus is on connection with nature through our breath and sensory awareness.

Georgina begins by having us become aware of our own breath – its pace, its temperature (hot or cold) and its evenness or fluctuations. She reminds us of our connection with nature through our breath – our outbreath is nature’s inbreath. Also, we draw vital oxygen from the plants and trees that surround us.

Georgina then leads us on a sensory journey. We are invited to take in the sights that surround us at a macro and micro level – the broader terrain and the proximate features of nature. We can notice the undulations in the landscape or the flow of waves breaking on the shore; the small plants and larger trees; the cultured lawns and the wild bush. On a closer look, we can view the colours that surround us, taking in plants, water and sky (with the colours of clouds – black, white, blue and grey). With a closer inspection, we can observe the leaves (their form, distribution and colour), the veins coursing through the leaves and the lines or markings that are visible to the naked eye. We could be watching dragonflies flutter above tall grass, grasshoppers gnawing on leaves of citrus trees, butterflies flitting through the air with no apparent goal, birds descending on bottlebrushes to draw nectar, Pelicans gliding gracefully across the Bay in search of schools of fish, or ladybirds landing on roses in our garden to feed on aphids.

We can take in the smells that surround us. It could be the salt from the sea, the earthy smell from soil and fallen leaves, or the tree born odours such as eucalyptus or wattle. It could be the strong smell emitted by herbs such as basil, lavender, or oregano – each with its own distinctive aroma. There may also be the smell of approaching rain or the earthy smell of sodden ground.

We can attune our ears to the sounds in nature. It could be the breeze blowing and rustling the leaves of the trees, the sound of rain hitting the ground, the whistle or song of adjacent birds. In paying attention to the sounds of birds we can notice sounds above, below, beside and in front of us – sometimes as small finches flitter amongst small, colourful bushes. Along with the sounds of the birds, we can pay attention to the colours, size and form of the birds we observe.

Attention to nature through conscious awareness can engender calm and contentment, increase our resourcefulness and enhance our sense of connection with all living things. Through immersing ourselves in nature we can experience gratitude for the air we breathe, the sights and sounds we experience, and the feelings of awe and wonder. We can appreciate how nature helps us to reset, broaden our perspective, reduce our agitation and heal us. We can bathe in nature’s beauty, aliveness and adaptability.

Reflection

I’ve been reading Kate Legge’s novel, Kindred: A Cradle Mountain Love Story, that traces the story of Gustav Weindorfer and Kate Cowie who fell in love with each other and with Cradle Mountain in Tasmania. They were both amateur botanists and members of the Field Naturalists Club of Victoria, established in 1880. They set about establishing eco-tourism in Cradle Mountain and Gustav is credited with strongly promoting (and achieving) the development of a national park in the area so that its beauty could be enjoyed by all nature lovers. Cradle Mountain is now visited not only by thousands of tourists but also by scientists from all over the world.

Kate Legge gives us a glimpse of Cradle Mountain and its surrounds through the eyes of dedicated botanists, Gustav and Kate, as they travelled the mountains collecting, documenting and preserving plant specimens some of which they sent to Germany, Austria and Britain. In 1903, before Kate and Gustav were married, Kate presented a paper to the Naturalists Club about Mount Roland in the region of Cradle Mountain. She expounded on the magnificent view from the top of the mountain and contended that botanists and geologists alike “must pause to admire it, with that silent outreach of the soul toward eternal beauty”.

Gustav himself frequently recorded his travels and discoveries as he indulged his “wanderlust” through nature. He wrote letters for his botanist colleagues around the world, reports for the Naturalist Club and articles for newspapers. One such article published in 1910 in The Weekly Courier describes Holidays in the Cradle Mountains in these effusive words, capturing sights and sounds of the mountain as he gazed in awe and wonder:

…through the silent darkness of this supreme mountain solitude stole the murmuring sound of rippling water leaping from rock to rock, gladly escaping from the sombre shadows of the lake to the sunshine of the valley. [Notice how the alliteration with the letter “s’ evokes silence penetrated by awesome sights and sounds]

Kate Legge, herself a mountaineer as well as author and journalist, found inspiration for her writing in walking mountain trails. In a chapter in her later book, Infidelity and Other Affairs, Kate discusses her “walking life”. She likens walking to writing – “walking is one foot in front of the other, just as writing is one word before another”. Other similarities she identifies are obstructed progress, concentration and shifting attention, movement towards and away from a destination. For Kate, walking is “thinking time” that provides a “fresh perspective”. She maintains that walking “rejuvenates the body and the mind and gives rise to rumination”. Kate shares the perspective of naturalist Henry David Thoreau who advocates “sauntering” and who communed with nature “on daily rambles, rarely taking the same path twice”. She suggests that with this approach we can succumb to a “meditative trance” as we scan the horizon or focus “on small miracles”, such as a “leaf curled in a web”.

So often “shoulds” get in the road of our communion with nature – the “doing” deadlines that are often self-imposed. However, when we make the time to grow in mindfulness through natural awareness, we can really appreciate the benefits of nature and our connection with our natural environment.

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Image by Penny 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.

Meditation for Clarity and Calm at Work

Neuroscience has highlighted the multiple benefits of mindfulness practice. These include the capacity to pay attention, sustain task-focus and regulate our emotions. Mindfulness can contribute to our overall happiness by enabling us to be in the present moment (rather than the past or future), to sustain positive emotions and recover from perceived adverse events. Mindfulness enhances our capacity in a work situation by enabling us to handle abstract ideas, to be reflective and to strengthen the communication between the hemispheres of the brain. Nadine Cherry who teaches meditation and other mindfulness practices to corporate organisations around the world, maintains that meditation can also develop clarity and calm.

In a 12-Minute Meditation podcast (25 April 2024), Nadine facilitated a session on the theme, Meditation to Cultivate Calm and Clarity. In that session, she introduced two mindfulness practices that she contends can be used in the workplace or when working at home. They are short and can be undertaken anywhere:

1. H.A.L.T. Practice

In this process we can explore the bodily sensations and our thoughts associated with hunger, agitation, loneliness and tiredness. It involves stopping for a brief period to focus on each of these states and how they are affecting us in the present moment. It requires tuning into our bodies and our thoughts to assess where we are at in terms of these four human conditions. It also involves reorienting ourselves when we find that we are being impeded by what is going on both in our bodies and our minds. Nadine maintains that this mindfulness practice can contribute “to inner peace and outer performance at work”. It can be very useful as a prelude to a potentially tense meeting, a formal presentation or a challenging conversation.

2. Vagal Toning

Vagus nerves are a critical component of our parasympathetic nervous system and are responsible for creating signals between our brain, heart and digestive systems. Before challenging activities at work, we can experience tightening of our throat or chest. Vagal Toning involves deep breathing and exhaling with a particular sound that relaxes the vagal nerves. The process requires deep inhaling through the nose and then exhaling while making a “v” sound. This action expands the chest and calms the body, enabling clarity of thought and decision-making. Vagal toning helps us to become more grounded and connected to ourselves, enabling us to relax and to achieve optimal performance in the moment.

Nadine asserts that these two mindfulness practices facilitate “authentic expression” and enable us to overcome “overwhelm” when working. By helping us to become more connected to ourselves, they assist us to become clear about what we want to do and say in a work situation.

Reflection

While listening to Nadine’s podcast and participating in the mindfulness practices she described, I recalled another calming benefit of mindfulness that has personal relevance to my health situation. I had been watching Dr. Darin Ingles’ Q & A video presentation on the Inflammatory Auto-Immune Response where he mentioned strategies to manage Mast Cell Activation Syndrome (MCAS) – a condition that I am currently experiencing.

Mast cells release chemicals that produce an inflammatory response to a “perceived invader” – something the body may misperceive as harmful (e.g. a particular protein found in gluten or milk). The activation of the mast cells can range on a spectrum from mild to severe. Darin maintains that in addition to medication, natural processes such as bodywork “can be helpful in resetting your autonomous nervous system and getting it back under control”. He mentions explicitly bodywork such as meditation, Tai Chi, acupuncture, vagal toning, yoga and deep breathing as being especially helpful in toning down the body’s “hyper-active” immune response.

The calming influence of Tai Chi on MCAS provides an added motivation for me to practise Tai Chi regularly. I have previously developed a mnemonic, FRAICHE, to remind me of other potential benefits of this mindfulness practice – flexibility, reflexes, awareness, intention, concentration and coordination, heart health and energy. So, as we grow in mindfulness through practices such as H.A.L.T. , vagal toning and Tai Chi we can calm our body and mind and develop clarity in our thinking and decision-making.

Darin is the author of The Lyme Solution: A 5-Part Plan to Fight the Inflammatory Auto-Immune Response and Beat Lyme and provides a regular podcast on health issues, Resilient Health Radio.

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Image by Fabiana pfernandes 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.