Category: Awareness

Managing A Flare-Up from Fish Poisoning

Flare-ups are a common occurrence with Mast Cell Activation Syndrome (MCAS) – triggers (such as food or chemical intolerance) can exacerbate existing symptoms of immune hyperactivity or be a catalyst for new symptoms to occur.  Managing these flare-ups is a constant challenge for someone like me who has MCAS, as their occurrence is often unpredictable and, sometimes, confounding.

Creating a story from a single object or event

At our October Creative Meetup, an online group for writers-with-chronic-illness, we were introduced to the idea of writing a story from an object.  Our facilitator, Jennifer Crystal, showed a video of Billy Collins reading his poem, Lanyard, as an example of how this is done.

The idea of focusing on an event or object is also illustrated by Melissa Febos in her book, The Dry Season, a memoir about her conscious choice of twelve months of celibacy after a tempestuous time of cyclical relationships that proved to be harmful to her health and self-esteem.  In particular, she focused on her “maelstrom”, a two-year toxic relationship with another woman that proved to be controlling and destructive and was the catalyst for her chosen period of celibacy. 

Throughout her memoir, Melissa revisits this event (story object) to highlight its impact and to serve as a benchmark against which to evaluate other potential relationships.  Her period of celibacy was designed to provide sufficient distance from the maelstrom to facilitate self-insight, overcome her fear, find herself again (having suffered from “the-need-to-please”) and to achieve peace with her experience of the maelstrom.

Creating my story of a recent flare-up

At our Creative Meetup, we were encouraged to write our own story using one or both of the following prompts:

  1. Make a list of five prompts you associate with your story. Pick one and write about it (poetry or prose) OR
  2. Write something (poetry or prose) that includes all five objects.

I chose to address the second prompt and drafted a poem around the five objects I identified that were associated with my recent flare-up:

fish, hives, rash, poisoning, pain

The poem that I have included at the end of this post is the outcome of my writing and reflection as well as the group sharing and discussion that occurred during the Meetup session.  Participants shared their writing and their vulnerability in stunning prose and poetry (given they had only 20 minutes to write their story). 

A flare-up from fish poisoning

My story began with having Red Emperor, a wild-caught fish, for dinner. I am allergic to soy so I avoid farmed fish that are typically fed on soy products.  I thought it would be safe to eat the Red Emperor as it is not farmed but wild caught in deep waters such as those off the coast in Northern Australia.

What I experienced, however, is an immediate reaction to the Red Emperor (unlike previously where I had eaten it without negative consequences).  My body reacted strongly this time – resulting in a bright red rash on both upper arms, accompanied by itchy hives and a burning sensation on my affected skin as well as night sweating and headache. 

This led me to do personal research on “fish allergy”.  What I established is that there are two major forms of fish poisoning:

  • ciguatera poisoning
  • scombroid, also known as histamine poisoning.

My first thought was that I had experienced histamine poisoning given histamine intolerance stemming from my MCAS chronic illness.  However, on further research, I established that the reaction is more likely to be caused by ciguatera poisoning.  The symptoms of each form of fish poisoning are similar but the causes differ substantially; a distinctive symptom of ciguatera poisoning is “extreme itchiness” which was my experience. 

Histamine poisoning is caused by bacteria developing on dead fish that have been stored ineffectively (e.g. not deep frozen or stored on ice).  Ciguatera poisoning, in contrast, results from the food chain which commences with small fish eating marine toxin produced by algae in reefs and being consumed by larger reef fish which are then consumed by humans.

Ciguatera poisoning is more common in fish that live in warm waters and “spend some or most of their time in reefs”.  Red Emperor is explicitly implicated in carrying this form of fish poisoning.  Freezing, cooking or cleaning do not destroy the ciguatera toxins.  The presence of ciguatera toxins are not visually detectable, nor can allergy to the toxin be detected by allergy testing.  

Recovery from ciguatera poisoning

A disturbing fact is that ciguatera poisoning symptoms can recur without further exposure to a poisoning source.  The likelihood of symptom recurrence is increased by drinking alcohol.   Recommendations for recovery include avoiding fish for at least 6 months and abstaining from alcohol for 3 months after eating the toxic fish.

A detailed article on ciguatera poisoning in the National Library of Medicine maintains that relapses in symptoms “may be triggered by consuming alcohol, nuts, seeds, fish, chicken, and eggs”.  The authors advise that “patients should be counselled to avoid fish, caffeine, alcohol, and nuts within 6 months of poisoning”.

The itch and burning sensation from ciguatera poisoning made it difficult to sleep despite the use of Dexeryl – “an emollient cream that reduces irritation, itching and scratching”.  Eventually, I had to resort to using Eleuphrat, a type of Cortisone cream, to reduce the itch and pain and enable me to sleep.

I have had a series of flare-ups since the initial contamination after eating Red Emperor.  The first was following a glass of wine; the second after eating a salmon and avocado sushi roll.  Others involve accidental consumption of egg or chicken.  Research has shown that farmed salmon, typically used in sushi, can lead to ciguatera poisoning because of toxins in the fish food. 

One of the problems associated with fish poisoning is that you can tolerate a particular type of fish at one point and yet at a later time react severely to eating it, sometimes with fatal consequences.  For example, a newspaper report recounted the case of a father-to-be who collapsed after eating barramundi at a restaurant and died five days later in hospital.  He had experienced tingling in his mouth a few years before when eating barramundi.  A Victorian health website identifies barramundi as one of the more common causes of fish allergy.

Reflection

It is easy to jump to a conclusion re the cause of symptoms without undertaking the necessary research and/or seeking medical advice.  The problem of accurate diagnosis of symptoms is compounded by cross-contamination and the commonality of symptoms (e.g. hives and rash) among various food allergies. 

For example, consumption of coffee can cause a rash and itchy hives resulting from histamine poisoning caused by impurities in coffee such as  “molds, mycotoxins, pesticide residues, yeasts, and other biogenic amines”.  Purity Coffee seeks to provide quality coffee beans and a coffee process to avoid these issues and enable people with MCAS and histamine intolerance to have their regular coffee.

We can be more mindful of the factors influencing our symptoms if we take time to research and reflect on our findings and related experiences.  As we grow in mindfulness, we can become more self-aware and conscious of what is impacting our body and develop creative ways of achieving recovery from ill-health.

I developed the following poem In reflecting on my experience with ciguatera poisoning:

The Flare-Up

Flaring up like a campfire flame,
fighting feverishly a toxic invader.

Redness spreading across swollen ridges,
a painful path of itch and burning sensations.

Awash in a sea of marine toxins,
overwhelmed by a challenged immune system.

Elimination diet a testing time,
complex interactions of food and drink.

Seeking answers through research and inquiry,
wild caught fish traced as the trigger.

Unanswered questions,
uncertain future,
unpredictable outcomes.

Where is my anchor?

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This post is provided for information purposes only and is not intended to replace personal medical advice provided by a trained medical practitioner.  Please seek advice from a qualified professional before deciding on treatments for yourself or other members of your family.  This article reflects my personal patient experience – MCAS and related diseases affect each individual differently.  I frequently share my research findings with my medical practitioner and this informs my treatment.

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Image by Thomas 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.

Adapting to Unpredictability

Bhanu Joy Harrison provided a meditation podcast  on Unpredictability and Adapting in September this year.  Her session was one of the weekly meditations and talks offered by UCLA Health.  Bhanu is an accredited meditation teacher and clinical social worker specialising in the resolution of trauma.  She integrates neuroscience with mindfulness practices to enable people to achieve greater joy, balance and resilience.  Bhanu provides classes, workshops and resources to assist people to manage the daily challengers of unpredictability.  Her website provides a series of guided meditations and she offers access to an app that serves as a journalling guide. 

Impact of unpredictability

Drawing on neuroscience, Bhanu maintains that our brain and nervous system is forever seeking stability and predictability as this provides us with an abiding sense of control and safety.  In our daily life, however, we have to deal with the unpredictability of our own health, our workplaces and interactions, our shopping and entertainment environments and our social and family encounters.  The unpredictability and challenge to our stability of these daily events can lead to stress, overwhelm and inability to cope.

In her talk, Bhanu pointed out how much we rely on past experience to predict what will happen in the future as a result of current events.  We look for reliability and steadiness in our life.  She contends that our past experience provides us with some form of scaffolding or framework that influences our perceptions and our predictions.  

Mindfulness as a toolbox for managing unpredictability

Bhanu contends that mindfulness practices progressively build our personal resources and provide us with a toolbox to draw on to manage unpredictable situations.  In contrast, mindless absorption of news and replaying of adverse events serves only to destabilise us and reactivate our stress response.

Bhanu argues that we often look to the past to seek out ways to achieve steadiness, comfort or groundedness.  Unfortunately, our past solutions typically involve short-term solutions which prove to be maladaptive in the medium to long term – solutions such as overeating, drinking excessive alcohol to numb the pain or discomfort, “seeking illicit pleasure”, increasing caffeine consumption or scrolling endlessly through social media to distract us from the challenge of the present moment.  

Drawing on her extensive experience with clients and the increasing body of research on mindfulness, Bhanu asserts that mindfulness practices undertaken with clear intention and self-kindness effectively create “a different input” for our nervous system than that created by our maladaptive solutions.  In her words, mindfulness is capable of enabling us to “generate a different kind of sensory, emotional and mental response” to unpredictability and the related stimuli such as fear, anxiety and sense of loss of control.

Bhanu argues for creating an “ever-growing toolbox of ever-adaptive and helpful skills” through mindfulness practices. She encourages us to develop a “big variety of options” so that we can resource ourself effectively when we encounter the  diverse challenges associated with unpredictability. Her suggestions for mindfulness practices include:

Bhanu argues that by developing a mindfulness toolbox, we are resourcing ourself for times when we are overwhelmed by the unpredictable such as a chronic illness diagnosis or the death of a loved one.  She provides the example of one of her clients who experienced a “tsunami of grief” to illustrate this point.  As Bhanu explains, when we experience grief our rational, analytical brain is hijacked by the amygdala and our lower brain. This shuts down our capacity to engage in logical thinking and solution generation.  We then need “an escape hatch out of lower brain structures” (limbic system and brainstem). 

Bhanu’s client developed an “escape hatch” in the form of a Mason jar where she stored pieces of paper recording “things that I can do in the moment” – simple things such as drink water, pat an animal, call a friend or relative or breathe deeply and slowly.  On the jar she placed a picture of a life-jacket to remind herself “to put her life-jacket on” by accessing her jar and the suggestions within that could help her “settle herself, come back to the present moment and ground herself”.

The jar proved to be a ready resource that was both physical and accessible and provided a choice of pathways back to mindfulness and groundedness.  It meant that she did not have to think in the moment about what resources she had available to her to access the stability and control provided by mindfulness.

Awareness of our “Circle of Influence”

Bhanu suggests that we think about our Circle of Influence – identifying the things that we can control and those that are outside our control. This then involves letting go of what we can’t control.

By way of example, Bhanu suggested that the things you can’t control include:

  • the weather
  • events beyond our country
  • the emotions or opinions of other people
  • traffic flow
  • natural disasters.

Unfortunately, we can spend a lot of time going over events beyond our control through obsession with the news, over-concern with other people’s views of us, and anxiety about potential natural disasters.

Bhanu indicated that one thing we do have control over is our choices.  For example, we can choose to be continually disrupted by “external noise” or we can spend time with relaxing music, enjoying nature or just being quiet.  We can choose to avoid foods that create a “flare-up” for us or indulge at our own expense. We can also choose how we respond to stimuli – recognising that there is a gap between stimulus and response.

We can choose to listen to our internal critic telling us that “we are not good enough” or “consciously shift to something else” that is positive and helpful.  Our choices extend to controlling our words and tone of voice – we can reaffirm that “I can control what comes out of my mouth”.  Our boundaries are also under our control if we choose –  for example, deciding when to say “yes” or “no”.  We can develop a mindset consistent with an “internal locus of control”– where we are not totally controlled by external events but believe that we have some influence on our environment, are willing to take responsibility for our actions and respond proactively to unpredictable events in our life such as chronic illness.

Reflection

In seeking to manage the unpredictable in our life we can learn from people like Jean-Dominique Bauby.  Despite suffering a massive stroke that left him unable to talk or move, he was able to create his memoir by blinking one eye to let his specialist nurse know word by word what he wanted to say.  His other strategies for gaining stability and control included humour and virtual travel.

As we grow in mindfulness through a range of mindfulness practices, we can enhance our personal resources and develop a readymade toolbox to achieve stability and control in times of unpredictability such as chronic illness or the death of a loved one.

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Image by Martine Auvray 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.

Finding Inspiration When Living with Chronic Illness

I have previously written about the inspiration provided by Joni Mitchell and her remarkable life as a singer/songwriter despite experiencing multiple chronic illnesses.  Joni’s song Both Sides Now epitomizes her approach to chronic illness  – accepting both the dark and the light in her life.  Like many inspiring people she made the most of the light (the good things) in her life.  Joni was rewarded with multiple Grammy Awards and induction into the Rock and Roll Hall of Fame.

During the recent online Creative Meetup (for writers-with-chronic-illness), our facilitator, Jennifer Crystal introduced a book by Jean-Dominique Bauby, titled The Diving-Bell & the Butterfly. This book is incredibly inspiring as it shows Jean-Dominique’s ability to make the most of what was a totally debilitating situation.  His book composed under extremely difficult conditions is replete with humour and a commitment to make the most of his devastating chronic illness.

At the time of experiencing his illness he was Editor-in-Chief of the famous Elle France – Elle being the “the  world’s largest fashion and lifestyle magazine”.   While in his early forties, when he was married with two children, he suffered a massive stroke, resulting in a condition known as “locked-in syndrome (LiS)” –  “total paralysis but still have consciousness and their normal cognitive functions”.  All he could do physically was turn his head and wink with his left eye.  Though he frequently experienced pain, he could not breathe, eat or swallow without assistance.

Jean-Dominque described his bodily condition as being “imprisoned in an invisible diving-bell”, while his mind was free to roam “like a butterfly”.  He used his very limited capabilities to revisit his memories and undertake virtual exploration of the world at large.  Though he often described his body as a “cocoon”,  he was not mentally constrained by its disabling limitations.

He used his imagination., for example, to picture his colleagues from 28 countries, striding behind their CEO on route to a major fashion conference where they would be discussing the metaphysical question “What is the ideal Elle woman?”.  Even though he had never been to Hong Kong, the site of the conference, he was able to picture the demeanour of his international colleagues and imagine the location and proceedings.

The Diving-Bell serves as a memoir of Jean-Dominique’s time in a Navy hospital after suffering his stroke.  It captures his shock and disorientation on waking from a 20-day coma to find that he was totally paralysed and unable to talk.  He shares intimate details of his hospital experience and his mental roaming with his uniquely dry humour.   

Communicating with locked-in syndrome

In his memoir, Jean-Dominique explains how he was able to communicate by virtue of his “Guardian Angel”, a speech therapist, who devised an alphabet with the letters of the alphabet arranged in order of the frequency of their use in the French language.  People, medical staff and visitors, could point to the letters in turn and he would wink to indicate that they had chosen the letter he was trying to convey.  This tiresome and slow process enabled him to express his discomfort, needs and wishes.  

The constructed alphabet was the method of communication that he used to dictate his book to Claude Mendibil who was transcribing his communications for publishing. Jean-Dominque stated that he frequently revised letter and words in his head and would memorise paragraphs to communicate them to Claude via this special alphabet.

In true humorous style, Jean-Dominique described his visitors in terms of their ability to utilize the newly devised alphabet to understand his communications.  There were the taciturn people, nervous and reluctant to get a letter or word wrong;  the impulsive who rushed in and anticipated what he was going to communicate (usually getting it wrong) and who saved him the effort of communicating by asking questions and answering them themselves; and the meticulous people who feared they would make a mistake and took things so incredibly slowly that it made an already tedious process more painful and demanding. 

Experience of medical professionals in the hospital

Jean-Dominique’s sense of being “locked in” was further aggravated by the callous treatment he received at the hands of some medical staff.  For example, an ophthalmologist arrived at his bedside unannounced and proceeded to sow together the eyelids of his right eye because the eyelids did not close in that eye – thus exposing his eye to infection  (as he subsequently learned from someone else).

Jean-Dominique described the ophthalmologist as brusque and arrogant with “a couldn’t care less attitude”.  He wondered (in his mind) whether such an uncaring medical professional was retained by the hospital to serve as a target for patients’ dislike of, or  dissatisfaction with, their overall hospital treatment. He himself frequently felt anger but kept it at a manageable level , ”like a pressure cooker”, to prevent uncontrolled release of this emotion.

There were also two orderlies who “unceremoniously dumped” him in a wheelchair (like a piece of dead meat).  Jean-Dominque’s way of managing his own maltreatment at the hands of some medical staff was to silently assign them descriptive names such as “the exterminator”.  He did, however, appreciate the care and concern offered by other medical staff.

Dealing with false rumours

Jean-Dominique not only had to deal with his locked-in syndrome but also with harmful rumours that circulated in Paris about his health condition.  As false rumours began to circulate, he decided to provide Bulletins to his circle of friends and associates (initially 60 people) to report on his life, his progress and his hopes.  He indicated that the first bulletin “repaired some of the damage caused by rumour”.  He heard that the City had “put him down for the count” or, at the very least, that he was in a “vegetable state”.  He was particularly critical of patrons of Café de Flore, “one of those base camps of Parisian snobbery that sent up rumours like flights of carrier pigeons”.  His friends overheard a conversation in the Café where he was being described as a “complete vegetable”.

His correspondence provided “gratifying results” in the form of return letters and the realisation of people that they could ”join him in his cocoon” through writing to him.  This resulted in a daily ritual whereby letters were opened for him and “spread out before his eyes”.  This proved to be a revelatory process about the character and personality of his contacts. 

Reflection

Jean-Dominique demonstrated that although you may be bedridden or severely handicapped, you can travel, at least virtually, by using your memory or intentional imagination. This mental roaming has been facilitated recently by the free release of drone images of multiple countries and scenic sites. I also have a gift from one of my daughters – a digital photo album that can serve to stimulate my memory of places I have visited including Paris, London, Bath, Rome, Lake Como, Turin, Venice and Cartagena.

In out Creative Meetup, after we were introduced to The Diving-Bell & the Butterfly, we were given two prompts for our reflection and writing:

  1. Even if bed-ridden (or compromised in any way),where do you travel in your mind?
  2. How has illness impacted your ability to travel?  You can write about a specific travel experience from the past or one you hope to have in the future.

As I reflected on these questions I became acutely aware that my present chronic health conditions severely restrict my capacity to fly long distances.   In particular, my multilevel spinal degeneration makes lying or sitting in one place for any length of time very difficult, sometimes resulting in sciatica, a condition I experienced previously following a trip from Milan to Hong Kong.  This realisation saddened me, but I resolved to take on board Jean-Dominque’s inspiring journey and undertake virtual travel journeys, aided by visual technology.

Mindfulness practices can help us to regulate our emotions, appreciate what we do have and can do and be more aware of nature and its capacity to inspire wonder and awe.  As we grow in mindfulness, we can find creative solutions to our limitations and constraints.

I composed the following poem when reflecting on our discussion and writing:

Finding Inspiration

There is inspiration everywhere,
if we seek to become aware.

Portability through podcasts,
audibility through audiobooks.

People creatively managing multiple challenges,
resolving restrictions and incredible constraints.

Driven by passion and purpose,
to rethink, reframe and redefine.

Sharing without stint,
shaping their environment.

Their agency hard-earned,
Look, listen and learn.

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Image by Pierre Blaché from Pixabay

By Ron Passfield- Copyright (Creative Commons license, Attribution-Non-Commercial -No Derivatives.

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

                          

Managing the Seasons of Chronic Illness – Summer

In a previous post,  I discussed the season of winter in the progress of our chronic illness.  There I explored “wintering” as a way to move beyond the darkness, despondency, despair and debilitation that accompanies the experience of winter in the progression of our chronic illness.  Wintering, in this context, involves “letting the light in” through rest, renewal and regeneration.  In my accompanying poem about wintering, I explored what it meant for me during a particular period of darkness.

In our August Creative Meetup, Jennifer Crystal read an extract from her book, One Tick Stopped the Clock, as a stimulus piece for writing in our group of writers-with-chronic-illness.  The extract focused on the hope associated with the arrival of summer following a period of winter.  In the extract, Jennifer recounts her desperation in the face of her totally debilitating Lyme Disease.  At the time, she had a catheter feeding intravenous antibiotics through her arm and chest cavity to her heart.  She was grossly sleep-deprived, suffered migraines , battled a health insurance company for her reimbursement entitlements, and experienced brain fog.

Jennifer sought help from a therapist as well as a specialist in Lyme disease who was a member of ILADS (International Lyme and Associated Diseases Society).  Jennifer’s therapist, Michelle, spoke to her about her dreams that involved Jennifer water skiing.  In an earlier period, Jennifer was unable to water-ski but had been able to drive the boat for other water skiers.  The literal interpretation of her dream suggested that she was missing the ability to water ski herself.  However, Michelle suggested that a metaphorical interpretation was that the dream reflected “loss” in a broader sense – the loss of a positive and productive  life style that preceded Jennifer’s debilitation from Lyme Disease.

Michelle suggested that even though Jennifer should be in the “summer of her life” at age 27, the summer would come and the experienced winter of her chronic illness would pass.  The future onset of summer represented hope for a better quality of life.  Michelle questioned Jennifer’s disbelief in the possibility of experiencing “the summer of her life”.  Jennifer expressed her doubts when Michele said, “you can live a happy, fun, fruitful life once you are well”.  Jennifer has gone on to publish her book despite her personal hardships, and become a story coach and trainer, author of a weekly column for the  Global Lyme Alliance and facilitator for the Creative Meetup group, hosted by the Health Story Collaborative.

Creative Meetup Process – Writing Prompts

Following the reading of the stimulus material, we were invited to address one of the following writing prompts:

  • Write about something that you have lost as a result of chronic illness.
  • What have you replaced or how have you transformed this loss?
  • How would you describe the season of your current illness?

I decided to address these prompts together because they were interdependent.

The loss I focused on was my inability to play social tennis during the cold seasons of the year because of chronic arthritis in the joint of the middle finger of my right hand.  The cold weather aggravates the arthritis which is also aggravated by allergies (allergic arthritis brought on by MCAS).  However, I have been able to replace my social tennis with weekly social pickleball which also enables me to play more consistently because I play it indoors and am not subject to the vagaries of the weather (or exposed to cold winds).  While I still have to manage the arthritis in my finger, the impact of hitting the ball is not as great or painful as it was with tennis.

The Summer of my medical condition

When I thought about where I was up to with managing my current chronic health conditions, I thought of summer – a season of hope.  I have located a general medical practitioner who is an immunologist and very willing to explore a range of treatment options.  She is also willing to listen and not jump to conclusions. 

Pickleball has been a very effective and rewarding replacement for my social tennis.  The gains through pickleball are many and varied:

  • New knowledge and skills
  • The opportunity to continuously learn
  • The chance to try out new shots – experiment
  • The ability to build on existing competence in shot making and strategic play built up over many years of tennis (more than 60 years)
  • A new form of exercise and increased motivation to stay fit.

Pickleball has transformed my weekly social, physical activity so that it is not as demanding as playing tennis.  It also provides a range of new rewards:

  • Joy from experiencing new competence (intermediate level pickleball skills)
  • Developing new friendships
  • Fun with playing with different partners in a social environment (the requirement to “play nice”, rather than all-out competitively)
  • Social support from people who are also aged and experiencing physical limitations
  • The enjoyment of looking forward to catching up with my pickleball group and playing more games.

When I reflect on my current medical condition, I can appreciate that in many senses I am experiencing a summer of my chronic illness.  I have framed my present state as “summer” because of what I have achieved or am achieving:

Reflection

I’ve recognised that a prerequisite for managing chronic illness is acknowledging that there will be ups and downs, times of moving forward and other times of regressing – there will be winters and summers of our chronic illness experience.  For each of the seasons of our medical condition, there are strategies that we can use to heal and recover.  One of these is the process of writing.

If we can grow in mindfulness through practices such as Tai Chi, meditation and mindful walking, we can learn to reframe our situation, express gratitude for what he have and can do and access our creativity to explore healing options.  There is a lot of helpful information on the Internet that is readily available to us if we choose to look.  The real test is in the application of what we learn. 

Dexter Dunphy and Bob Dick, in their book Organizational Change by Choice, provide a relevant quote from an anonymous author (p. 126):

To look is one thing
To see what you look at is another
To understand what you see is a third
To learn from what you understand is something else
But to act on what you learn is all that really matters.

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

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Image by Jürgen from Pixabay

By Ron Passfield- Copyright (Creative Commons license, Attribution-Non-Commercial -No Derivatives.

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

Working with Emotional Energy

Lion’s Roar provides a deep resource base for developing an insight into Buddhism.  The website provides a full glossary of key Buddhist concepts, traditions and terms as well as an extensive library of audios (advice and meditations), in-depth articles and guides for meditations).

In one of the many audio resources, Sharon Salzberg , author and mindfulness meditation teacher, interviewed Buddhist teacher, Dzogchen Ponlop Rinpoche.  The discussion covered the topic, How to Work with Your Emotions.  Dzogchen Ponlop is the author of the classic book, Emotional Rescue: How to Work with Your Emotions to Transform Hurt and Confusion into Energy That Empowers You.

Emotions as energy

Hilary Stokes, PhD and Kim Ward, PhD point out that the word “emotion” derives from the Latin, “emotere” which literally means “energy in motion”.   They draw on the work of Barbara Frederickson, positive psychology pioneer, to show that challenging emotions such as fear, resentment, anger and frustration can constrict our thinking.  Because we tend to focus on the inherent threat of these emotions, we effectively block out new ideas and create barriers to building “resources and relationships”. 

Dzogchen Donlop stated that as a teenager he was angry and vengeful but eventually realised that he had a choice in how he worked with emotional energy.  Viktor Frankl reminded us that between stimulus and response there is a gap and in that gap lies the freedom of choice.    The energy of emotions can undermine us or empower us and we have a choice in how we manage the power of emotional energy..

Moving emotional energy

Hilary and Kim maintain that we can sense emotional energy moving through our body and it can be experienced either as expansion (e.g. feelings such as happiness, joy, calm) or contraction (feelings such as sadness, anger, envy or resentment).  While emotional energy itself is neutral in nature, it is perceived as either positive or negative based on our interpretation of the associated feelings and bodily sensations.  We ascribe meaning to emotional energy based on our inherent assumptions, life experiences and thought patterns (e.g. optimism or pessimism).

By their very nature as energy, emotions are “meant to be felt and released”, not “suppressed and ignored”.  Hilary and Kim argue that burying emotions rather than releasing them results in “low emotional intelligence and stress burnout”.

In the interview with Dzogchen Ponlop, Sharon Salzberg described a situation where she was participating in an intense meditation training course when the Buddhist meditation teacher challenged her about how she was dealing with her sadness at the loss of a friend.  She tended to bottle it up because she thought “negative emotions” were “not approved”.   However, the Buddhist teacher advised her “to cry your heart out” to release the energy of her emotions.  She was advised not to push her emotions away or to be “embarrassed by them”.  Instead, she was encouraged to “have a relationship” with her feelings.

Dzogchen Ponlop, in the interview discussion, suggested that we notice how energy of an emotion changes over time, it “never stays the same”.  He argues that when we experience an emotion we should not “judge it” or “conceptualize a storyline” – not try to work out how it arose.

Working with emotions to release emotional energy

Hilary and Kim maintain that bodily sensations provide the key to unlocking emotional energy, removing limiting thought patterns and overcoming stress.  They suggest that thought-based approaches are limited in shifting ingrained, suppressed feelings.  In their view, sensations provide reliable information about bodily and emotional states.  They point to the growth of somatic therapy to deal with trauma and adverse childhood experiences, including processes such as somatic experiencing.

Hilary and Kim advocate an approach to releasing emotional energy that they call “bodymind listening”.   They  argue that if you “allow your body to feel the feelings”, you will be able to access “insightful, accurate, and practical guidance” in the form of messages that can lead you to identify limiting thought patterns, facilitate release of emotional energy and heal your body and mind.

The process of “feeling the feelings” requires openness and curiosity (a mindfulness orientation) and suspension of rationalisations, justifications, judgments and “righteous protection”.  To this end, Hilary and Kim offer a meditation on Emotions are Energy for releasing stress, letting go of stuck emotions  and strengthening the connection between mind and body.

Reflection

Challenging emotions can be experienced as positive as they can serve to awaken us to a “sense of disorder” when our body-mind is seeking homeostasis.   Fear, for example, warns us of danger and is essential for maintaining life and survival.  Emotions, too, can open our hearts and enable us to express vulnerability and build relationships. 

I recently experienced anger and resentment over a particular incident at a sporting event.  I found that I kept playing the incident over and over in my head, developing justifications for my “righteous anger” and, in the process, intensifying my negative feelings.  This experience proved to be quite disturbing – upsetting my equanimity.

A reflection on resentment helped me to put the issue in perspective.  However, from the above discussion I gleaned that I need to “feel the feelings” (without the contaminating influence of the rational brain), in order to heal at a deeper level.

As we get in touch with our feelings and our bodily sensations, we can grow in mindfulness and develop a deepened awareness of our limiting thought patterns and access creative options for healing and personal growth.

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Image by Alexander Antropov from Pixabay

By Ron Passfield- Copyright (Creative Commons license, Attribution-Non-Commercial -No Derivatives.

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

Mindfulness Meditation for Full Catastrophe Living

In the movie Zorba the Greek, Alexis Zorba contends, “I’m a man, so I married. Wife, children, house, everything. The full catastrophe.”   Jon Kabat-Zinn draws on this analogy in writing his landmark book, Full Catastrophe Living, in which he contends that mindfulness meditation enables us to “make use of the full spectrum of our experiences, the good, the bad, and the ugly”.  He argues that mindfulness meditation helps us to deal with “what comes our way” as part of the human condition and to do so in ways that are both healing and deeply nourishing.

In his book, Jon draws heavily on the mind-body connection to show how we can use our inner wisdom “to cope with stress, pain and illness” and demonstrates how mindfulness meditation facilitates this interconnectedness.  He contends that through mindfulness practices, we can experience not only joy and satisfaction but also suffering in a positive way that enriches our life.

In his book, he explains the benefits of mindfulness meditation, drawing on scientific evidence and the researched benefits of the Stress Reduction Clinic which had been operating for 25 years at the time of his writing, with “over 16,000 medical patients completing its eight-week program”.  His aim in writing the book was to make the practice of mindfulness meditation and its benefits readily accessible to people in everyday living –  contending with the vicissitudes of life in an ever-increasingly, fast-paced world.  To this end he describes in detail a range of mindfulness practices that can be employed by anybody as part of their daily living.

The nature of Mindfulness Meditation

Jon makes the point that in the Stress Reduction Clinic the facilitators don’t do anything for the patients apart from giving them “permission to live their moments fully and completely”.  He states that mindfulness meditation is “non-doing”, by “being in the moment”.   Through this process of paying attention to their minds and bodies – becoming fully in touch with themselves – patients come to terms with “the full catastrophe that can make life more joyful and richer”.

In the final analysis, participants in mindfulness meditation achieve a new way of seeing their situation, a “way of awareness” that is characterised by wholeness instead of fragmentation.  The challenge for participants is to “stop doing” and to “start being”.  Given the “non-doing” nature of mindfulness meditation, it is self-defeating to set a specific goal for the practice such as lower blood pressure, heal a specific illness or overcome reactivity.  Such goal-oriented behaviours are the product of a doing-culture.

Mindfulness meditation draws its healing power in part from addressing our thought patterns.  Jon points out the research that highlights how our thought patterns, beliefs, emotions and attitudes can “harm or heal”.   Our thought patterns are pervasive, impacting every aspect of our life as they:

  • lie behind our motives and choices
  • determine how we perceive the world and ourself
  • shape our level of confidence in our ability to achieve things
  • underpin our beliefs about how the world works and “what our place in it is”.

Research shows that thought patterns can impact our health and contrasts the positive impact of optimism versus the negative impact of pessimism.  It also highlights the power of self-efficacy (belief in your ability to achieve/succeed) and its capacity to influence your ability to grow and develop.

Mindfulness Meditation practices     

In Full Catastrophe Living, Jon highlights a range of mindfulness meditation practices that we can engage in at any time during our day.  He makes the point that the deciding factor in how beneficial the practices are is not how perfectly you do them but the regularity with which you practise.  Here are some thoughts on the anchors for each of the practices he mentions:

  • Breath – is fundamental to our existence, without it we are not alive.  Jon describes breathing as “the unsuspected ally in the healing process”.   The basic process he advocates  involves getting in touch with our breathing, focusing on the rise and fall of our abdomen or chest or the sensation of air entering and leaving our nostrils.  The aim here is not to try to control our breath but to be aware of it happening and noticing its character – fast/slow, easy/laboured,  deep/shallow.  Resting in our breath can be healing and relaxing.   Beyond this basic process of being in touch with our breath as it happens there are various techniques available to us at anytime to consciously vary our breath.  We can breathe with intention or adopt one of the breathing exercises advocated by James Nestor such as  resonant breathing or box breathing.  Alternatively, we can adopt “rhythmic breathing”, advocated by Richard Wolf as a form of mindfulness meditation. 
  • Sounds – listening to sounds as you meditate, “hearing what is there to be heard, moment by moment”.  It does not involve “listening for sounds” nor judging the quality, duration or resonance of what we hear.  Jon maintains that we can treat the sounds as “pure sound”  and simultaneously be conscious of the space between – the silences that occur whether we are listening to music or sounds in nature.  He encourages us to breathe the sounds into our body and “letting them flow out again on the outbreath”.  Listening to sounds can occur in any meditation posture – sitting, standing, lying down or walking.
  • Sitting meditation – Jon advocates this form of meditation as a way to “nourish the domain of being”. as a counter to incessant moving and doing. He maintains that we can employ several objects of attention (anchors) in the process of a sitting meditation, including our breath, sounds, our whole body or our feelings and thoughts.  Jon suggests that you can start this form of meditation by first being grounded in your breath so that you are not easily carried away by the content of your thoughts or feelings.  In relation to your feelings, he recommends that you observe your moods and associated feelings and thoughts “as they come and go”.  When focusing on thoughts he reminds us that they are “impermanent”, coming and going often at speed.  He says the challenge is to identify the “me” thoughts and to be able to delineate thoughts associated with anger or resentment,  greed or clinging.  Jon maintains that this type of mindfulness meditation is taxing and should only be done for short periods. 
  • Walking meditation – involves consciously “attending to the experience of walking itself”.  This may involve recognising the marvellous coordination of the whole body required to be able to walk or acknowledging with gratitude that you are able to walk at all (while there are numerous people who are unable to do so).  It could involve focusing on the sensations in your legs or feet but not looking at your feet.  Jon indicated that in the Stress Reduction Clinic, people walk in circles or in a straight line to avoid goal-oriented walking – focusing on the act of walking not the destination.  He suggests that when you pay more attention to the process of walking, “you appreciate that it is an amazing balancing act”.  Barriers we can experience in undertaking a walking meditation can include loss of balance, strong emotions and invading thoughts.

Reflection

What Jon describes in the above mindfulness meditations can be undertaken anywhere, anytime.  They can become a part of a daily routine and/or a spontaneous mindfulness practice in the midst of doing other things.  The more frequently we undertake routine mindfulness practice, the more we can grow in mindfulness and become spontaneously mindful of our bodies and our surroundings.

In Ella Ward’s novel, The Cicada House, her main character, Caitlin, comments that the wind through the trees sounds like waves.  After reading that comment, I spontaneously paid attention to the strong winds blowing  from the Bay through the trees to our back deck. As I focused on the sound of the wind amongst the trees, I could sense the sound of waves rising and falling.

My reflection on Jon’s discussion of mindfulness meditation led to the following poem:

Mindful Walking

Walking with intent,
process not destination.

Grateful for the balance and coordination,
grateful that I can walk.

Focusing on the sensations of feet and legs,
feeling pressure on the soles.

Listening to sounds,
hearing the birds,
above and below, in front and behind, to the left and the right.

The world of “doing” falling behind,
overtaken by “being”.

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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.

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 cautions 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.

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.

Writing “In Community” for Healing

During the recent Healing Through Writing Festival, Grace Quantock presented on the topic, Living Well with Chronic Illness.  Grace maintained that people with chronic illness often have to deal with missed symptoms, explaining away illness, and social exclusion.   She stated that it is often harder to gain belief from others than to deal with the symptoms themselves.

Grace identified an experience that I have had with diagnosis of chronic illness.  She indicated that people with chronic illness can produce “exhaustive documentation” only to be ignored by medical professionals.   In my case, I spent three hours documenting the major events and symptoms in my medical history over 10 years only to have an Allergist refuse to read the document or add it to my medical file.

The barriers to writing for healing

In a previous post, I explored the idea of memoir-writing for healing as proposed by Janelle Hardy.  Grace argued that there are often barriers to our attempts to write as people with chronic illness.  She suggested that isolation, both emotional and practical (in terms of access to information), creates a personal barrier. 

The writing community itself can also establish barriers by promoting “a productivity culture” that is translated into words-per-hour or words-per-day (e.g. setting a goal of writing 2,000 words per day).  The assumption, as Grace points out, is that writing is a linear process.  However, people with chronic illness have a different relationship to writing time in that they can be intermittently or chronically disabled in terms of capacity to write.  They may have impediments like brain fog, arthritic limbs, chronic fatigue and/or nausea.

Grace maintained that there is an assumption in the writing community, and especially amongst publishers, that writing has to “be a certain way”.  There is a tendency to favour universal experience over individual stories – personal experience and coping strategies are often discounted.  Writers with chronic illness can be blocked by literary gatekeepers who argue that their stories are “too niche” or “not literary enough”. 

Grace suggested that we can too easily succumb to the expectations and standards of others by thinking that we “do not have the credentials” to write or “lack the recognition or prestige” required to publish.  This mental barrier makes it harder for us to envisage our “own writer’s journey” (which will be unlike that of anyone else).  Often relevant credentials are difficult to acquire because of lack of access to training and/or the availability of empathetic mentors.

She argued that the real or core questions relate to “what we hope for in the writing” and what will have the most positive impact for us.

Strategies for overcoming the literary barriers to writing with chronic illness

According to Grace, a starting point is to change our expectations of ourself in terms of written output but also in terms of healing outcomes.  She warned that writing with the mindset “that writing has to fix us” (it must be “reparative”) can actually harm us.  An “extractive mentality” can do us violence.  She suggests that instead of trying to “write to heal”, that we view writing as “a way that is healing”.  The process itself is healing; the healing outcomes are beyond our control. We have to move from an outcomes-focus to a process focus and write the best way we can, given our physical, mental and emotional states.

Contribution to a literary lineage

Grace suggested that we reframe the writing process by acknowledging that we are contributing to a “literary lineage” – writers with chronic illness – and, in the process, creating our own legacy.  There are writers with chronic illness who have considerable literary achievements such as Alice Wong (with Lupus); Flannery O’ Connor (with Spinal Muscular Atrophy); and Virginia Woolf (serious mental health conditions).  Over recent months, I have been inspired by Jennifer Crystal, author of One Tick Stopped the Clock: A Memoir, who contracted Lyme Disease from a tick bite. Jennifer is a weekly columnist for the Global Lyme Alliance, creator of the Writing to Heal Immersive Program, and story coach/facilitator for the Health Story Collaborative.

Grace argued that by writing with chronic illness we are creating documentation that can lead to personal and system change.  By navigating the process of writing about difficult or challenging health situations, we are creating “words that will outlive us” and offering possible solutions or strategies for someone else experiencing chronic illness. She stated categorically that “the poem we write today might be a lifeline somebody else finds after our lifetime”.

Grace contends that our writing – whether as a novel, memoir, blog, poem or journal – can be a “springboard for the next person” as we can be offering alternatives and providing evidence of their efficacy.  We can reframe our solitary writing as “part of a larger network” and a contribution to our “collective experience, collective tapestry and collective legacy”. 

Cultivating our literary community

A strong theme throughout Grace’s presentation is her emphasis on networking within our writing community.   She proposes three core strategies to take advantage of the mutual support and resources that can be available through such a network:

  1. Name three people who are part of your literary community.  In thinking about this, I was able to name Annie Brewster, Jennifer Crystal, and Jennifer Harris.  Annie is the creator of The Health Story Collaborative (HSC), designed to “harness the healing power of stories”.  She is the author of The Healing Power of Storytelling: Using Personal Narrative to Navigate Illness, Trauma and Loss. 
  2. Identify an element of their work that resonates with you.  I have networked with each of the authors mentioned above when they have been facilitators for the monthly, online Creative Meetups, hosted by HSC.  The Meetups are a network activity for writers with a chronic illness.  Each of the facilitators have a profound knowledge of narrative therapy and a very strong commitment to helping people to heal through shared personal narratives.
  3. Exchange literary support with other members of your literary community, e.g. re-tweet, write supportive blog posts and create book reviews for members of your literary community.  I have had correspondence with each of the previously mentioned Creative Meetup facilitators, and they have read my blog posts and poems and offered support and encouragement.  I have also mentioned their work and promoted their writing in my blog posts, e.g. articles about Annie Brewster and Jennifer Crystal.  The Creative Meetups themselves involve a community of writers who willingly share their stories and their writing.  The participants offer supportive challenge and the constant encouragement to move towards healing.

Reflection

Grace has made me more aware that I am not writing alone as a writer with chronic illness and that I am not just writing for myself and my own health.  As I become more aware of my participation in a literary community, I can become more conscious of how I can support, and be supported by, others in my literary community,

This newfound appreciation enhances my gratitude for my ongoing access to an understanding literary community where I don’t have to explain myself, defend my position or pretend to be someone other than who I am.

As we collaboratively grow in mindfulness through our reflections and writing, we can increase our connectedness, build our mutual support and deepen our insights.

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Image by Pete Linforth from Pixabay

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

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

The Space Between – Overcoming Overwhelm

Susan Sontag, in her book Illness as Metaphor, reminds us that we have dual citizenship – “in the kingdom of the well and in the kingdom of the sick”.  At some point in our life we move from one to the other “even for a spell”.  For chronic illness suffers this can be a very long spell which is part of the inherent challenge of chronic illness.

When Susan wrote about illness she was suffering from breast cancer at the time and took issue with the metaphors and myths that surrounded this form of illness.  Myths include the idea that illness is “a punishment for moral degradation”.  In her view, such myths only added to the burden of illness and failed to create space for healing.  Susan also took exception to military metaphors such as “battle”,” war” and “survival” used to describe illness from cancer.  She suggested that these metaphors negatively affect patient’s physical and mental wellbeing as they induce fear, guilt, and a  sense of isolation – factors along with the illness itself contributing to overwhelm.

Susan was concerned that inaccurate myths and inappropriate metaphors induced a sense of helplessness, detracted from the biological nature of Illness and ignored the scientific evidence that many illnesses are curable through breakthroughs in modern medicine.

Finding agency in the space between

In a previous post, I discussed ways to develop agency in the space between illness and wellness (however temporary).  This included strategies for exercising agency as a writer, employing education and research and exploring options in our recreational and/or artistic endeavours.  I gave the illustration of Lucy and her exercise of creative agency through piano playing despite being totally blind and experiencing multiple mental health issues including autism.

Fighting misinformation to overcome overwhelm

Mal Uchida, writing for Havard Medicine, recounts her experience of having the COVID-19 vaccination while pregnant.  She was publicly attacked in social media and received multiple forms of hate mail for her stand for the health of her unborn child.  While expressing empathy for people who held the contrary view about the efficacy of the vaccination, she continued to advocate for its potential health benefits.  Being both a mother and a child psychologist, she was able to empathise with parents who were making the really difficult decisions associated with raising children. 

Mal attempted to counter misinformation and associated overwhelm and fear by sharing her own struggles, discussing relevant scientific information  and enlisting the aid of the media and Japanese Government to communicate her message.  She acknowledged the dilemma for parents, expressed empathy and compassion and sought to provide accurate, up-to-date information.

Strategies for managing overwhelm during life transitions

There are many transitions that we experience in life – including from childhood to adulthood, from wellness to illness, from a current job to a new job, from marriage to divorce, from loss to gain, from working to retirement.   Mindfulness can help us to effectively overcome the overwhelm involved in the transitions in our life.  For example, Dr. Shalini Bahl, author of Return to Mindfulness, offers an 8-week online course titled, From Overwhelm to Clarity: Mindfulness Skills for Breaking Free and Living Fully.  This course involves a supportive community and offers mindfulness micro-practices designed to develop awareness, compassion, inner calm, joy, energy and equanimity.

Storytelling can help us to unearth our manufactured “life story” – that often involves “negative self-stories” that undermine us and create overwhelm.  An integral part of storytelling is a supportive community that enables us to be truly honest with ourselves by providing “supportive challenge” – questioning our assumptions about ourselves and others while offering support to be the best person that we can be.

Reframing can help us cope better with life’s transitions such as aging or menopause.  It involves changing our “negative narrative” and exploring the opportunities provided by “a different stage of life”.   Marianne Cronin in her novel, The One hundred Years of Lenni and Margot, provides an example of reframing by Margot who is 83 years old and suffering from a terminal illness.  Margot comments, when sharing stories, that at her stage of life she is “a childless mother, husbandless wife, a parentless daughter”.  Instead of dwelling on the inherent losses involved in her stage of life she notes that “it was sad, but also freeing” because she was “no longer anybody’s” and was free to go anywhere and do anything she wanted.  Margot ended up establishing a deeply personal relationship with17 year old Lenni through storytelling and the shared experience of a terminal illness.                                 

Wintering – the process of letting light into the darkness in our life – can help us to identify the opportunities in the spaces between, e.g. between wellness and illness.  We can let the light into our lives and the darkness of overwhelm through gratitude, intentional breathing, exploring nature and focusing on self-care through “rest and retreat”.   Writing a reflective poem (as I did in my wintering blog post), can help us to reduce overwhelm and identify a way forward.  It can even help us to see the “gift of illness”.   

I have found that education and research have helped me to deal with the potential overwhelm of a chronic illness.  I’ve been able to access resources about my MCAS condition through participation in global summits, reading expert articles and enrolling in a relevant, mindfulness-based course for tempering reactivity of the vagus nerve involved in MCAS.  There are many free resources available online for specific illnesses, such as the Guide for Driving with Epilepsy that covers manifestations of epilepsy and essential considerations and safety tips when driving.

A meditation to overcome overwhelm

Mitra Manesh, meditation trainer with UCLA, offers one of their weekly meditations on the topic, Working with Overwhelm.  In this guided meditation, Mitra discusses the causes of overwhelm in today’s fast-moving, complex global environment.  Factors contributing to overwhelm include climate change, international wars and conflicts, economic uncertainty, rapid technological innovation and the changing global political environment. 

She suggests that we can view overwhelm by envisaging a cup that represents a certain level of personal capacity to which we add information and visual overload, social media obsession, family and economic challenges, health issues and workplace friction and changes.  The resultant overflow represents our overwhelm.

In her guided meditation Mitra encourages us to use visualisation and cultivation of options for moving forward.  She suggests that we envisage walking through a gate to a large open space with grassy slopes, a water feature, trees and a fresh breeze.  Taking deep breaths to imbibe the fresh clean air, we can begin to relax and feel supported within this visualised environment.  The options for moving forward then include:

  • accepting something within our current reality (that we are resisting or denying)
  • letting go of a constraining mindset
  • thinking about who or what might assist us to move forward
  • focusing on something we can do now that is doable and important (“don’t look at the pile” that is the source of overwhelm – focus on one thing!).

We can return at any time to the envisaged, spacious landscape which provides “lots to choose from” and offers openness, support and potential wellness.

Reflection

When I participated in Mitra’s meditation on how to work with overwhelm it helped me to reduce overwhelm I was experiencing in a small area of my life, writing this particular blog post.  We had just come out of the other side of a week-long cyclone and I was finding it difficult to focus on my writing.  After doing the meditation I found that I could move forward by accepting the disruptive nature of recent events, changing my expectations and letting go of a framework for the article that was constraining rather than freeing me.  

Simultaneously, I received an email from Shalini about her course, From Overwhelm to Clarity, and this gave me added incentive to adopt a new framework for the blog post around the concept of “overwhelm”.   While writing this blog post represents a small area of my life, writer’s block had the effect of negatively impacting other areas of my life such as my ability to concentrate and focus on what I was doing.

Growing mindfulness through meditation, Tai Chi and micro-practices such as intentional breathing can help us to relax and rest, see a way forward, and adopt creative solutions to the disabling effects of overwhelm.

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Image by Plutozoom from Pixabay

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

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