Tag: chronic illness

Time as Metaphor

George Lakoff and Mark Turner point out in their book, More Than Cool Reason: A Field Guide to Poetic Metaphor, that we “deal with time metaphorically”, just as we do with other abstract concepts such as life and death.  In a previous post, I discussed how a metaphor itself shapes our perceptions and world view and how poetry can enable us to change metaphors and break frames.   Time metaphors are pervasive in our everyday language and expose how we view time.

Time metaphors

In this current post, I discuss several time metaphors and explore ways to break free of the constraints in thinking and feeling that they elicit:

If only I had more time

The desire for “more time” is fraught with difficulty because “time” is finite in the sense that we only live one lifetime (normally, up to 100 years).  The saying suggests that we could do “more of the same, without reflecting on how we use our time”.  We need to review how we spend our time, e.g. in watching TV, sleeping, going to the movies, talking, spreading rumours, playing video games, engaging with social media, feasting on the news.  We can treat time as an endless commodity to be drawn on at will or view it as something that is finite and valuable.  We can waste time or fritter it away because we have not learned to value what time represents – our chance to learn, grow, contribute and support.  There is more to time than meets the eye.

Killing time

This is a way of saying: I need to use time up because I have too much time.  It suggests that  we are bored, have nothing positive or productive to do.  This is an opportunity to savour the freedom of boredom.  We are consumed by the need to be doing things all the time, to fill in time with activity.  The emphasis on “doing” instead of “being” creates its own stresses.  Boredom can be freeing in that it motivates us to be more creative in how we spend our time – the work that we do, our leisure choices, our creative pursuits, developing relationships, our mindfulness practices.  Arlie Russell Hochschild suggests that our need to be busy creates a Time Bind that means we are caught up in an obsessive need to fill in time with activity. In the workplace, we have to be seen to be busy – what Christine Jackman describes as “performative busyness”.

Running out of time

This expression often refers to an impending deadline, one that is externally imposed or self-created.  We can review the external deadlines in terms of importance and necessity and, where possible, negotiate a change in timeline.  Self-imposed timelines are time- traps of our own creation.  We can review them and question why we have created them – are they the product of limiting self-beliefs, a need to please, or a need to achieve?  In reviewing our self-imposed deadlines, we can ask ourselves, “How necessary are they?” “How could they be changed/adjusted?”  By way of example, when I started out writing this blog, I set myself the goal of daily blog posts. This became unsustainable when I started co-facilitating manager-development programs across the State. On the advice of my mentor, I changed my goal to two or three posts a week. I have subsequently adjusted my timeline again to reflect my desire to write a series of e-books based on this blog.  I now aim to write two 1,000 word posts per month, along with updating my archive page.  Adjusting our self-imposed deadlines for changed circumstances becomes essential if we are to avoid creating unnecessary stress.

Wasting time

We often hear the expression, “That’s a waste of time” or “Stop wasting time”.  The emphasis on waste is a recognition that time is a finite resource for our life here on earth.  Unfortunately, we spend so much time either thinking about the past or worrying about the future – catalysts for depression and anxiety.  Jake Bailey reminds us too that we can spend so much time on looking forward to tomorrow (and live in expectation of what it has to offer) that we lose sight of the present.  Elisha Goldstein in his book, The Now Effect, reminds us that being mindful of the present moment can change our life.  Richard Carlson and Joseph Bailey reinforce this message in their book, Slowing Down to the Speed of Life.  They maintain that we speed up our lives when we live in the past, engage in self-judging or become overly-analytical of our daily life and its related problems.   They argue that the benefits of slowing down to the present moment (rather than racing ahead)  include improving our health and relationships, enjoying more peace and equanimity, reducing our stress and strengthening our focus and capacity to be productive.   

Time metaphors and chronic illness

 Jennifer Crystal – writer, educator and  author of One Tick Stopped the Clock – has written about the different perceptions of time and mindsets by people experiencing chronic illness and those close to people suffering from chronic illness.  In a blog post, The Time-Warp of Tick-Borne Illness, she discusses time metaphors in the context of her own experience of tick-borne chronic Lyme Disease.

Jennifer points out that we typically have a different relationship to time (and different time metaphors) at the various stages of our life.  As children, time does not move fast enough; as we become aged, we want time to slow down.  When people experience chronic illness, different time metaphors come into play.

Jennifer notes that she lost so much time through illness which delayed her degree graduation, her relationships and job/life plans.  For her during this period of chronic illness and a subsequent relapse, time moved too fast.  She felt an urgency to catch up with time.  However, her recovery depended on her slowing down and spending time on self-care.  Despite the feeling of having a lot of catching up to do,  Jennifer has had to move at her own pace to achieve her goals in her own time and to avoid further major relapses.

Jennifer noted that perceptions of time can be so very different for the well in comparison to the chronically ill. The former often wish for the free time that they see as the province of the chronically ill (time to lie around and read or watch TV).  What they don’t realise is that the chronically ill person often does not have the energy or pain-free experience to enjoy these envied activities.  Jennifer maintains that each side (the healthy and the chronically ill) need to develop an understanding of the perspective and experience of the other.  Even the healthy person experiences stressors and pain in this fast-paced world.

Reflection

In this post, I have concentrated on several time metaphors that can constrain our perception and mindset.  However, there are time metaphors that have positive connotations or that promote proactivity, such as a stitch in time saves nine.

In the March Creative Meetup, an online support group for writers-with-chronic-illness, Jennifer shared her blog post and offered two time-related writing prompts:

  1. How has your relationship to time changed with your illness?
  2. Imagine yourself springing forward or backward to a future or past moment in your life.  Write a letter to your future or former self from your current self.

 As we grow in mindfulness through reflection and other mindfulness practices, we can gain self-awareness about our own time metaphors and find creative ways to break the frames that constrain our thinking and mindset.

I developed the following poem while reflecting on time metaphors:

Time Metaphors

Time doesn’t wait,
it marches on.

We waste time when
killing time,
living for tomorrow,
buying our time,
waiting for the right time.

We express time regrets when we say
if only I had more time,
I have too much time on my hands,
time is going too fast,
if only I had my time over again.

We express frustration with time when we say
where has all the time gone?
I can’t wait till tomorrow comes,
I’ve run out of time,
I’m caught in the trap of time.

Time is restless, relentless, resilient, resourceful.

Time is opportunity
to learn, grow and create,
to care for self and others,
to be in the present moment,
to experience wonder and awe.

_______________________________________

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.

A Letter in Response to Chronic Illness

Each month I participate in an online Meetup of a group of writers-with-chronic-illness sponsored by the Health Story Collaborative (HSC).  In our February Creative Meetup, we were introduced by our facilitator, Jennifer Crystal, to the concept of writing a letter to our chronic illness.  Jennifer who has Lyme Disease herself, read out a poem by Bonny van Geffen, titled One Lyme Warrior’s  Letter to Herself. 

In the letter to herself, Bonny exhorts herself to admire her own strength in dealing with her illness and to avoid guilt, shame, self-hate and self-accusations.  She compassionately encourages herself to forgive others for their lack of understanding of her illness and its debilitating effects.  In her final paragraph, she suggests to herself that she blame the tick and it’s bite, not herself, for her chronic illness.

Writing prompts

Following the reading of Bonny’s letter, Jennifer invited us to spend 20 minutes writing prose or poetry in response to one of the following writing prompts:

  • Write a love letter to your illness or yourself
  • Write a letter to someone involved in your story (such as a doctor, family member, or friend). What do you need them to know?

Participants in the group shared their insightful letters to their illness or self, some with humour that they explained was a coping mechanism for them.  One participant wrote A letter to My Father expressing appreciation and love for his tolerance and support during his mental illness.  Synchronistically, I wrote A Letter to My Son who recently suffered a mental health episode that resulted in his hospitalisation.

The context of my letter- its connection to my chronic illnesses

I have MCAS and histamine intolerance along with hypertension.  So the stress generated by my son’s behaviour over a week, affected me not only emotionally and mentally but also physically.  It resulted in increased blood pressure along with elevated histamine levels leading to rashes and hives, that alternated between being excessively itchy and generating very dry skin with a burning sensation.

Writing poetry as a mindfulness practice

I found that writing poetry during this time helped me to deal with the stress and enabled me to achieve some degree of emotional regulation and capacity to assist my son and other affected family members – a result of poetry as a mindfulness practice (as recommended by Rosemerry Wahtola Trommer).

My mixed emotions and hopeful thoughts were expressed in my poem, A Family Crisis:

Disturbing distress,
disrupted sleep,
distracted concentration,
confused feelings.

Concentric circles of disorientation,
extending to family and friends,
putting life on hold,
family’s peace and privacy punctured.

As I experienced a deepening divide between my son and myself during his mental health episode, I wrote a poem with the title, The Great Divide:

Anger and aggression rear their ugly head,
an unbridgeable chasm,
a physical, mental and emotional divide,
Therein lies grief – separation and loss.
Lives in disarray.

Stretching out across the void,
seeking connection,
unable to reach the other side,
into the tunnel, no light at the end,
dislocation, disturbance and dismay.

As I began to empathise with my son’s mental health condition, I came to realise that we were living in Parallel Worlds:

Parallel worlds of exhaustion,
of mind, body and spirit,
loss of control, freedom and choice,
shared experience of anxiety, uncertainty and deep distress.

As his condition began to improve through medication, I was able to experience some relief (together with mixed emotions) – expressed in the poem, Light at the End of the Tunnel:

Grateful for the care,
concern for the future,
admiring resilience,
trusting intention.

Relief floods in as aggression abates,
freedom, control and choice partially restored,
regret and shame emerge,
revisiting trust and faith.

New insight into “elevated”,
shedding psychosis,
re-emergence of sensitivity,
growing self-awareness.

Mixed emotions –
trust, patience and tolerance restored,
pain and hurt linger beneath,
still unease remains.

A way forward emerges,
light appears at the end of the tunnel,
faith and hope abide,
welcoming home what was lost.

My response to Jennfer’s writing prompts

I chose to write to the second of the writing prompts provided by Jennifer (listed above), so I wrote A Letter to My Son:

You are in pain and lost in your world.
I see you emerging out of the darkness of a deep tunnel.
We have been in parallel worlds.
Hurt and distrust lie within.

I look for the thoughtfulness and sensitivity that is the real you.
I treasure the times when you showed me love and concern.
I savour your presence, personality and power,
your insight, kindness and intelligence.

Reflection

At the end of the Meetup session, after we had shared our writing with other members of the group, Jennifer suggested that we write a short process journal entry.  The aim here is to identify what the session brought up for us in terms of insight and feelings.  It surfaced for me, my love for my son despite the hurt, pain and resentment.  It helped me to deal with my nervousness by focusing on what I truly value and savour in my son who is very likeable and loving.

I felt especially grateful to Jennifer for introducing us to the poetry of Rosemerry Wahtola Trommer.  Writing poetry during this family crisis was an important anchor for me as everything around me was in freefall.  I had read the introduction to Rosemerry’s book, Exploring Poetry of Presence 11: Prompts to Deepen Your Writing Practice, and started writing poems frequently, rather than as a one-off exercise.

In a previous Meetup, Jennifer reinforced the added value of sharing our writing by reading our poem/prose to others in the group.  Jo, a participant, reinforced this idea by commenting to me, “I felt calm just listening to you”.  I have subsequently listened to a number of interviews with Rosemerry about her anthologies of poems.  In an interview about her new anthology, The Unfolding, she states that she really loves doing poetry reading around the world and conducting classes where “we read poems and talk about them”.  Rosemerry maintains that she finds this process “ecstatic”, “Juicy“ and yummy” because “we all translate it [the poem] through the lens of our own experience”. There are times that Rosemerry is “shocked” or experiences “utter admiration” for the different translations of a poem that people bring to the conversation.

Writing poetry can help us to grow in mindfulness because it makes us more present to what is, develops insight into our inner world and encourages us to value and appreciate our outer world, its beauty and awe-inspiring nature.

_______________________________________

Image by StockSnap 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 Stability and Predictability in Times of Uncertainty

In the previous blog post, I discussed a UCLA talk by Bhanu Joy Harrison on the topic of Unpredictability and Adapting.  Bahnu emphasised our constant mind-body search for stability and predictability despite continuously encountering uncertainty in our personal lives as well as the world at large. She maintained that we are constantly seeking “an island of coherence in a sea of chaos”. 

The reference to “islands of coherence” is based on the work of Nobel prize winning chemist, Ilya Prigogine, who stated that when systems move away from equilibrium and create chaos, “small islands of coherence” can “shift the entire system to a higher order”.  When applied to our inner world, this concept relates to our capacity through interconnectedness to develop stability and predictability that, in turn, provides us with “strength, calm and groundedness”.

Bhanu maintained in her UCLA podcast that mindfulness practices are a way for us to create our own “islands of coherence”.   On the InsightTimer website, she offers a range of guided meditations on topics such as slowing down, getting unstuck and managing anxiety.  During her podcast, she also  provided a guided meditation on supporting ourselves by creating “islands of coherence”.

Guided meditation – providing support and groundedness

Throughout the guided meditation, Bhanu encouraged us to trust our support. As a starting point, this trusting involved letting our chair support us by enabling our weight to sink into the chair. While being conscious of this support, we can let our mind focus on the power of gravity to hold our posture in place (not allowing us to fly into the air but to stay grounded on the earth).  We can sense the “grounding effect of gravity” on our body.

While being conscious of this groundedness, we can notice what is happening in our body – a slowing of our breathing, loosening of our muscles and bodily tension.  The aim is to drop from our brain into our bodies like dropping an anchor “into the bottom of a lake”.

If we want to contain ourselves bodily we can give ourselves a hug – placing our left hand on our right shoulder and then reversing the process.  Alternatively, we can “feel the solid edges of our body” by squeezing along the length of our arms.  I often found that joining the fingers of both hands together can have this grounding effect as I feel the sensations pulsing through them.

Bhanu reminded us  that “our body holds so much”, including the visceral imprint of trauma.  She suggested that one way to calm the body and mind is to hold our head with two hands – one holding the base of the skull while the other holds the forehead.   Again, she encouraged us to notice any change in bodily sensations, our emotions and our mental activity. 

Bhanu then suggested that we focus on our legs because our legs help us to carry a lot of weight embedded in our torso from the “intensity of life”.  Our body, especially our torso, is activated by stress and being aware of this activation through our legs can “help spread out that activation”.  In particular, exercises such as pressing our feet into the ground (together or alternating) and squeezing down our legs with our hands, can serve to reduce the activation in our torso by spreading the load.  Squeezing down our arms can have a similar positive effect.

Working with the predictable – breathing

Bhanu suggests that when we are overwhelmed by the unpredictable, in whatever form it takes, we can focus on the “predictable” things in our life.  A key element of this strategy is to focus on our breath because “our body knows how to breathe”, no matter what is going on in our life.  Mindful breathing is an important aspect of mindfulness practice and there are many ways to achieve this re-focusing.  James Nestor, for example, promotes intentional breathing as a path to improved health and longevity.

We can breathe with the earth, engage in lower-belly breathing, or rest in our breathing.  Richard Wolf argues that we can develop deep listening through focusing on our breathing which he calls “the sound of your life”.  He maintains that we can listen to our breath just like a musician listens to music.  He provides a number of ways of doing this including listening to the sound of our breath (the inhalation and exhalation), resting in the silence between breaths and breathing in time.

Mast Cell 360 offers breathing as one of the strategies to de-activate the body’s over-active nervous response to perceived “invaders” (food allergies and, in particular, high histamine foods).  For example, in the masterclass, Mast Cell Nervous System Reboot, the course creator, Beth O’Hara provides examples of  “alternate nostril breathing” as one of the strategies she employed to redress the histamine activation effects of Mast Cell Activation Syndrome (MCAS).  “Resonance breathing” also forms part of her holistic approach to MCAS and histamine intolerance.

Working with the predictable – alternative strategies

In addition to breathing practices, Bhanu offers other strategies that we can easily employ on a day-to-day basis to focus on the predictable and work to de-activate our bodies from the stress effects of the “unpredictable”.  These practices include:

  • focusing on the seasons of the year which are predicable, especially winter and summer whose arrival is often celebrated with special rituals
  • consciously viewing the sunrise and sunset occurring each day
  • observing the emergence of flowers in Spring, the fall of leaves in Autumn (Fall), the shortening of the day in winter and their lengthening in summer
  • noticing the sun rising early in summer and later in winter
  • thinking about the way you are greeted by your children and your dog when you return from work each day
  • observing the millions of stars that appear each night.

Bhanu suggests that these grounding practices can help us to find peace and calm in times of turmoil – they can become our “island of coherence” in the advent of chaos.

Reflection

Chronic illness is often unpredictable and can prove to be complex and difficult to resolve.  The uncertainty about its development and resolution and the lack of help from the medical profession can exacerbate the situation.  Chronic illness too is disruptive, impacting quality of life and self-identity.

The mindfulness practices proposed by Bhanu can help to manage chronic illness.  As we grow in mindfulness, we can better regulate our emotions, draw inspiration from people who have mastered their debilitating situation, and find creative ways to address our own limitations and constraints.

___________________________________________

Image by Kanenori 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.

___________________________________________

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.

__________________________________________

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.

                          

Proactive Acceptance and Personal Research of Chronic Illness

I was very recently diagnosed with osteoporosis – an addition to my multiple chronic illnesses.  This diagnosis comes on top of existing chronic medical conditions including multilevel degenerative disc disease, exercise asthma, skin cancers, arthritis in my middle finger and MCAS (Mast Cell Activation Syndrome) with Histamine Intolerance (leading to multiple allergies/food sensitivities).  The existence of multiple chronic diseases prompted my medical practitioner to develop a Medicare-supplemented Chronic Disease Management Plan.

What I have learned from trying to manage my other chronic health conditions is that the way forward begins with acceptance of what is.  This is not a passive position but a proactive one entailing:

  • acknowledging the limitations imposed by your chronic illness
  • exploring the boundaries of the limitations (not accepting imagined restrictions or ones suggested by  a medical professional based on a limited perspective on your illness)
  • seeking expert and social support, e.g. the International Osteoporosis Foundation
  • redefining personal identity where that seems advisable
  • expressing gratitude for what you do have and can do
  • undertaking recommended testing
  • educating yourself about your medical condition – it’s precursors, progression and prognosis
  • researching healing modalities.

Why do personal research?

The reality is that medical practitioners, no matter how dedicated they are to your healing, are limited by time, training and discipline approach.   Very few are able to adopt a holistic perspective.  Given that chronic illness is typically complex, having a multisystem impact compounded by interdependency and interaction, a holistic perspective is often necessary to establish effective healing modalities.

Often medical practitioners, who are frequently time-poor because of the patient demand of their practice, adopt a symptomatic approach that just touches the surface of an illness and does not address the root causes.

I have experienced these limitations of medical practitioners and found that I had to supplement their perspective and approach with my own research and be an advocate for my own health improvement.  This personal research does not supplant the advice of a medical practitioner but supplements it, enabling you to ask, “What if…?”

My personal research in relation to osteoporosis

Following the personal research principle, I began to question why I was experiencing  osteoporosis when I had been exceeding the recommended intake of calcium for many years, mainly through Ostelin (Calcium and Vitamin D) and almond milk.  The question then arose as to how well my body was absorbing the calcium. 

In following this line of questioning, I learnt the following:

  • MCAS negatively impacts bone strength.  Dr. Lawrence B. Afrin (2013), international expert in MCAS, reports on research that shows that “premature osteopenia/osteoporosis is frequently found in mast cell disease patients”.  More recent research by David Harris (2024) shows that MCAS has a “direct role in bone metabolism” through the chemicals, such as histamine, released in the inflammatory response of MCAS.  He states that “this overactivation can lead to an imbalance in bone remodeling, favoring bone loss and increasing the risk of osteoporosis”.  So the focus on repair should include reducing histamine release through food control and anti-histamine medication/supplements.
  • My medical practitioner has given me a referral to an exercise physiologist to develop a weights exercise program which research shows helps to develop bone density and strength.  However, while this is important to undertake, it still addresses the symptom (loss of bone density), not the cause (potentially MCAS acting negatively on bone density).  To their credit, my medical practitioner had organised a bone density scan to identify the root cause of my degenerative disc disease and loss of height.  The scan established the existence of osteoporosis.
  • Exercise is an important part of the healing process for osteoporosis.  So my transition from playing tennis to playing pickleball, necessitated by arthritis of the middle finger on my right hand, is an important means to maintain an exercise regime and one that is less exacting but still providing weight-bearing activity essential for developing bone density and strength. There is also research that shows that people with osteoporosis should “avoid exercises with extreme spine curving forward, such as toe touches and sit-ups”.
  • I have previously written about the multiple benefits of Tai Chi and how it can improve your tennis game, as well as that of other racquet sports such as pickleball.  Tai Chi has been shown to improve bone health, being a gentle, weight bearing exercise.  This works in two major ways, (1) improving bone density and (2) improving balance and coordination (to prevent falls and related broken bones).  There are resources readily available to help people manage osteoporosis through Tai Chi such as Tai Chi for Osteoporosis (DVD by Dr. Paul Lam) and Tai Chi for Older People.

Further revelations from my personal research and experience

As I continued to research my chronic medical conditions, I discovered the following things that can impact my health:

Exercise anaphylaxis

Skin prick testing revealed that I have wheat allergy (among many other food sensitivities).  However, no medical practitioner mentioned to me that this could lead to what is known as “exercise anaphylaxis”.  Apparently, according to the Mayo Clinic, if you have a wheat allergy and you exercise “within a few hours after eating wheat” you can experience exercise-induced anaphylaxis. 

A holistic approach to MCAS incorporating nervous system regulation

Most practitioners who accept the existence of MCAS adopt a biomedical model which focuses solely on the body and the use of medications and supplements as the only healing modality.  Beth O’Hara, creator of Mast Cell 360, determined through her research and extensive work with patients that this approach adopted by most medical practitioners failed to address the nervous system, a key component of MCAS disease. Beth stated that righting the nervous system represented 50% of the necessary healing modality.  She was able to demonstrate through actual results that a healing modality for MCAS must include rewiring of three interrelated systems:

  • Parasympathetic re-balancing
  • Vagal nerve signalling
  • Limbic system re-regulation

To this end, Beth designed a masterclass titled Mast Cell Nervous System Reboot.  I have purchased this course and have been working my way through the science explaining the nature of MCAS and the underpinnings of Beth’s healing protocol. I am looking forward to undertaking the practices she incorporates in the course to calm the nervous system.   Her Mast Cell 360 website has multiple resources, including health coaches, for people experiencing MCAS and histamine intolerance.

Allergic arthritis

One of the things I discovered independently was the existence of allergic arthritis.  I had been wondering why the joint in my right middle finger was swollen whenever I experienced other allergic reactions.  Research has shown that allergies /food sensitivities, creating an inflammatory response, can aggravate existing arthritis and cause osteoarthritis in other parts of the body.

Low histamine foods – apples

Apples have been identified as a low histamine food.  I have found that I can readily tolerate Pink Lady apples without an allergic response.  However, I have also found that Red Delicious apples cause a serious reflux reaction, leading to a sensation of choking. 

High histamine foods – avocados

Avocados are identified as a high histamine food and can impact people who have a histamine intolerance.  However, research shows that avocados that are firm and not too ripe are lower in histamine than those that are soft and over-ripe.   This revelation was important for me as avocados have multiple health benefits and are a key part of my diet and are necessary to help me maintain my weight (which is a challenge given my restricted diet because of allergies/food sensitivities).


Reflection

The winter of my osteoporosis is yet to come as it is early days.  However proactive acceptance and personal research can enable me to maintain a summer perspective in relation to my chronic illnesses.  My research has highlighted things that I need to avoid, opened up new lines of inquiry, highlighted potential healing approaches and strengthened my ability to be an advocate for my own health with medical practitioners.

The more we grow in mindfulness through Tai Chi and other mindfulness practices such as mindful eating and mindful walking, the better we will be able to develop proactive acceptance, engage in personal research and find creative solutions to our chronic illness.

____________________________________

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.

_______________________________________

Image by Yana Vakulina 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.

____________________________________

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.

______________________________________

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.

Celebrate the Small Things in Life

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

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

Writing process

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

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

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

Celebrating the small things as we age

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

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

The simple act of being with nature

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

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

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

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

Reflection

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

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

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

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

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

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

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

Poetry for Peace

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

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

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

Image by Kev from Pixabay

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

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

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.

____________________________________________

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.

_______________________________________________

Image by Plutozoom 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.