Tag: Creative Meetup

Respecting Our Bodies

During our July Creative Meetup, we were introduced to the theme “Honoring Your Body” by our facilitator, Jennifer Crystal.  Jennifer provided two poems by different poets as a way to stimulate the creativity of our group of writers-with-chronic-illness.  

Our first stimulus poem was “Primary Care” by Dr. Rafael Campo that graphically addresses the body of the ill person, not only the symmetrical perfection but also the smell and blood.  He also exclaims, “beneath your fragile skin, I see the soul that you shield”.   He acknowledges that “you, body, weep, you think, you scar as if to show us our own history”.  The poem is included in Rafael’s sixth collection of poems, Alternative Medicine, that reveals his deep understanding of the relationships amongst “language, empathy and healing”.

 Our second stimulus poem was by Lucille Clifton, former Poet Laurette for Maryland.  The poem, “Homage to My Hips”, focused on a single body part, the hips.   In the poem Lucille expresses gratitude for her femininity and respect for her “body parts”.   She describes her body with pride and humour.   In a discussion of “What Poetry Is”, Lucille suggested that “poetry is a way of living in the world”.   “ a way of trying to express something that is very difficult to express” and “a way of trying to come to peace with the world”.  In her view, poetry comes from questions, not answers, and a sense of wonder about the world, ourselves and those around us.

Writing Prompts provided during the Creative Meetup

Jennifer provided the following writing prompts on the theme of the Meetup, “Honoring Your Body”:

  1. Write a piece of prose or a poem beginning with, “Oh, body…”
  2. Write a poem or a piece of prose about one part of your body.

I chose to respond to the first prompt and decided to write a poem titled, “A Letter to My Body”.   The poem reflects the emotional ups and downs that I experience as a result of having the chronic condition, Mass Cell Activation Syndrome (MCAS).  The condition means that I have to severely limit what I eat and drink, otherwise I suffer from hives, rash, swelling of the legs and ankles, arthritic pain, indigestion and headaches.

Despite this condition, I am able to do many things, including think and write, read and play sport.  I feel endlessly grateful for what I can do and savour my residual capabilities.  I will be 80 years old in three weeks’ time and I value my overall good health.

A Letter to My Body

Oh Body – you test me at times,
react to the smallest thing,
create pain, itch and scars.
What are you protesting?

Where did this reactivity come from?
Why now in later life?
Pleasures from food and drink
turned to irritation and frustration.

You have served me well,
provided joy, pleasure and contentment.
Your agility and resilience amaze me,
even now, a source of astonishment.

I value that I can still walk and run,
the many times that you have been competent,
your flexibility and keenness to learn and adapt.
enabling me to play five racquet sports and two football codes.

Physical discomfort is partly in my control,
I choose to eat what I enjoy,
there are consequences that I know,
you have been forgiving of my abuse.

I’m grateful for my genetic inheritance,
a gift that keeps on giving.
Despite my ups and downs,
you stand by me – a constant companion.

Every day I see people whose bodies will not let them walk unaided,
whose movement is restricted or uncontrolled.
Some have to rely on others for their mobility,
always dependent on someone else for basic tasks.

I’ve taken my independence for granted,
not tethered to others to move around,
doing many things with ease,
the recipient of competency’s benefits.

You’ve stuck by me through thick and thin,
through the aftermath of a serious car accident,
through melanomas and skin cancers,
through the daily MCAS assaults and arthritic pain.

You’ve kept me mobile and mentally alert,
physically capable beyond my years,
despite my lack of respect for you,
my abuse of your good intentions.

There is grief here,
about the foods I cannot eat,
the drinks I cannot drink,
the meals I cannot share.

You have sweated and swelled to protect me from perceived invaders.
I appreciate your diligence in caring for me,
in helping me to maintain my immunity,
in providing the good health to enable my physical pursuits.

You enable me to enjoy my mobility when travelling interstate,
to achieve my 3,500 steps daily,
to play recreational pickleball weekly at intermediate level,
to do my regular exercise routine that keeps me agile, strong and resilient.

I’m surprised by your sense and sensibility.
Your intelligence is not just in my brain,
but also in my gut and heart.
You rein in my unfettered emotions with deep breathing.

I marvel at your body memory,
your capacity to play racquet shots instinctively,
without any conscious intervention,
reading the play and responding intuitively.

I have savoured your competence,
bringing me endless joy in the “now” and in “replay”.
I feel challenged to show you more respect,
to curtail what I eat and drink that is harmful to me.

Oh body, you are like a tree firmly rooted in the ground,
swaying with the winds of change,
inexorably displaying my life history,
in the texture of your bark and the shedding of your leaves.

You are my grounding,
my earthly residence,
my link to nature and others,
my sole comfort in times of darkness.

Reflection

In writing the poem, “A Letter to My Body”, I was very conscious of what I had discussed in an earlier post when I wrote about poetry “blending opposites and breaking frames”.  I wrote the first five stanzas during our Meetup writing exercise.  As I reflected further and processed my mixed emotions around the Meetup theme, I became more conscious of the need to blend opposite emotions and achieve a breaking of my “victim” frame.  In the poem, I was able to bring together sadness and joy, grief and gratitude, disdain and respect, frustration and elation, disorientation and groundedness.  The poem helped me to change my inner landscape from “victim” to privileged.

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Image by wal_172619 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 Need for Mindful Listening by Doctors

After completing my last blog post about Dr. Rafael Campo’s view that poetry expresses the rhythm of the body, I began to reflect further on my recent medical experience.  Rafael contends that doctors can access the “interior story” of a patient by listening to the poetry of the patient.  The patient’s medical story encapsulated in their poem provides the “context” for the evolution of the patient’s illness.

Uncovering strong emotions

On writing about Rafael’s perspective on what makes a “good doctor”, I began to realise that my “interior story” was really one of resentment and frustration with my recent treatment by doctors and specialist consultants.  It has been difficult for me to own this part of my medical story because of my inherent respect for doctors and their calling to help people in need of medical assistance.

In the past, I had focused on the “data” about my medical story .  For example, when I wrote the poem The Sounds of My Medical Story, I was very focused on eliciting the sounds and not on exploring the meaning and feelings behind them. Through a process reflection, I became more aware of the disruptive nature of my chronic illnesses and my frustration about the lack of support from the medical profession.

It was left to me to find a way to tone down the sounds/noise of my body by exploring “periods of silence and solitude” so that my body could emit a “soft pattern of soothing sounds”.  I have found these soothing sounds disturbed on a number of occasions recently when my body reacted to specific foods and elevated my heart rate to twice its normal level (from 50 beats per minute to 110 beats per minute) for a period of hours.

Lack of knowledge and understanding of many doctors

Part of the problem is that there is a lack of knowledge and understanding amongst doctors and specialist consultants in relation to my core dermatitis and digestive illness, Mast Cell Activation Syndrome (MCAS).  In consequence, there is a tendency to deny its existence or to ignore it as a part of my medical story. 

It is interesting that one of the new questions added to the survey for the joint Influenza/COVID vaccination asks, “Do you have MCAS and do you suffer anaphylaxis from it?’.  This new question for the Federally-funded, free vaccinations gives an indication that the existence of MCAS and its potentially serious impacts are recognised by some medical professionals in positions of authority.

In contrast, last year I had asked my gastroenterologist to undertake a biopsy during my routine colonoscopy to diagnose officially whether or not I had MCAS (apparently, a biopsy is the only reliable way to test the presence of MCAS as a blood test alone does not provide the necessary information).  My gastroenterologist refused on the grounds that “MCAS is a controversial area” and not accepted by all medical professionals.  At the same time, he gave me the name of a specialist consultant in another area who recognises MCAS and works with patients on this illness. 

Disinterest and disdain of some doctors

I subsequently obtained a referral to a specialist allergist who refused to read my medical history (that I spent hours preparing) but undertook a number of skin prick tests that showed that I was allergic to soy, wheat and dairy products among other things.  He lost interest in my case when he established that I do not suffer from anaphylaxis.  It was left to me to ascertain what foods, in what quantities, are harmful to my body and mind.

I then turned to my General Practitioner (GP) who has a Doctorate in Immunology and again I received no insight into MCAS and how to manage it. However, my GP referred me to a specialist dermatology clinic at a hospital because they were of the view that I would be “a good candidate for biologic treatment” as my MCAS was not under control and I was restricted to 10 foods (that were not harmful to me).  No explanation of biologics or its potentially harmful effects were given to me (I had to research this treatment myself).   From my own research, I have established that biologics are complex and expensive, can cause an allergic reaction and expose the body to more serious infection.  They are often given by injection and can require regular visits to a hospital (e.g. fortnightly).  

During my initial visit and a follow-up to the dermatology clinic, I saw two different registrars.  The first took my medical history record “for the file” but did not discuss my MCAS or subsequent events such as a tick bite, Mammalian Meat Allergy or Ciguatera fish poisoning.  The registrar was totally data-focused on assessing my suitability for biologics.  I was given a request form for a battery of blood tests (20+) to check whether I had one of the conditions that would eliminate me from further consideration for biologics.

Apparently my blood tests results were “good” which I ascertained to mean that they did not invalidate me as a biologic candidate.  On the follow-up visit to another registrar, I was not given the test results but told, after a physical examination, that I did not qualify for biologic treatment as my dermatitis “did not cover my whole body”.  From the outset, I had explained that I was not interested in biologics but this was ignored. 

Since my visits to the hospital dermatology clinic involved more than three hours (including travel time), I cancelled a further follow-up meeting.  I received no useful help with my dermatitis (no one was interested in my symptoms or triggers) – the registrars were only interested in pursuing their biological model which, in this case, entailed biologics. 

In a recent Q & A session with MCAS 360 practitioners I asked whether they supported using biologics for MCAS, the response was that they did not support this approach because it was very much trial and error as it was very difficult to determine the appropriate level of intervention and because it had potentially damaging side effects.

Reflection

Interestingly, during a live presentation by Dr. Neil Nathan, author of The Sensitive Patient’s Healing Guide, a participant from Chicago described her experience with the medical profession when she attempted to discuss her MCAS triggers and symptoms.  She visited an allergist (who claimed expertise in MCAS) and “ was belittled” and told to go to a dermatologist.  However, the allergist ordered a serious of tests despite saying it “was a waste of time”.  The participant then visited a dermatologist who “put his hand up” and told her “to shut up”.  He prescribed steroids which proved to be “useless”.  The original allergist’s office rang the participant back after the test results and told her she had MCAS and needed to return.  The participant chose not to return and over time progressively researched her own condition and improved her health by herself.  Dr. Nathan himself, during his presentation, commented that “if you can find someone who will listen to what you are saying about how sensitive you are, that’s a godsend”.

Rafael highlights the fact that doctors are taught “detached concern and distancing”.  They are “immersed in the biological model” and think only in terms of diagnosis and the “treatment algorithm”.   Poetry, in contrast, expresses emotion fully and thus “abets empathy”.   The cadence of poetry demands mindful listening, attention and attunement to emotive expression and the human sounds within.  It challenges doctors who are caught up in endless checklists, “overwhelmed with diagnosis codes” and disabled by “distancing”.

The Health Story Collaborative is designed to close the listening and empathy gap.  It creates multiple platforms for health storytelling  and provides an empathetic audience of people-with-chronic-illness, as well as doctors.  A supportive community is a key element in the healing journey of people with chronic illness.  I have participated in HSC’s Creative Meetups for the past two years.  This group of writers-with-chronic-illness meets online once a month and provides an opportunity to write about our “interior story” and to share the outcomes in this supportive community.

I have written a poem to reflect my experience with medical professionals and my feelings about their lack of listening and empathy:

The Inner Story Laid Bare

Frustration and resentment abound,
each professional with deaf ears,
not listening to my subjective medical story,
intent on objective data exploration,
missing the “interior story”.

Failing to understand the context of my chronic illness,
blind to its origins, effects and impact on quality of life,
always grasping for what is scientifically known,
shared patient experience ignored,
in the interests of a deemed correct diagnosis and treatment.

Lack of knowledge and understanding,
desensitized by a biological model,
closed to our “interior story”,
unable to listen mindfully,
unwilling to summon empathy.

A peer support community,
ready to share their health story,
prompts for prose and poetry,
collaborating to close the empathy gap,
willing to be vulnerable for each other.

If medical professionals practised some form of mindfulness they can develop the art of mindful listening to patients.  Rafael Campo has used poetry as his way into mindfulness.  Research demonstrates that mindfulness practices are highly effective for the medical professionals. 

As they grow in mindfulness, medical professionals can enhance their physical wellbeing, reduce the risk of burnout, improve their care of patients and develop emotional regulation.  Training in mindfulness, undertaken by hospitals and medical institutions, is designed “to train doctors to actively listen and engage with patients mindfully” thus increasing empathy amongst doctors and improving the accuracy of diagnosis.

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Image by Alexa 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.

Listening to Our Interior Story

Dr. Rafael Campo, in an interview for the Boston Globe, spoke of the ability of poetry to reveal the “interior story” of the creator.  He highlighted the rhythm of poetry and how it mirrored the rhythm of the body.

Dr. Rafael Campo, a Harvard trained doctor, is a highly acclaimed poet, essayist and medical specialist at Harvard Medical School.  He is an untiring advocate and health professional for HIV infected patients.  Rafael is the author of nine books of poetry and other publications.  He is also the poetry editor for the Journal of American Medical Association (JAMA).  He teaches primary health care at several medical institutions, including Harvard Medical School. 

Rafael has received many awards and honours for his poetry and prides himself in using a “palette of poetry” by adopting a diversity of poetic forms, thus reflecting his “hybrid” experience.  Rafael uses his poetry to express his feelings for his cancer and AIDS patients as well as emergency room patients who have encountered the brutality of racism and homophobia in America.  He also teaches poetry to patients and medical professionals alike.

Listening to the rhythm of poetry

Rafael considers poetry to be “the opposite of silence” because it expresses the stories of patients and medical professionals.  He maintains that patients are often silenced by the biomedical focus of doctors who are trained to be “relentless in the pursuit of facts”.  He argues that doctors are taught to suppress their own feelings and adopt a “detached” stance.  In the process, doctors don’t listen to the life stories of patients and lose valuable insight into the “context” of the patient’s illness.

Rafael contends that just like listening to a heartbeat with a stethoscope, doctors can listen to “the physical rhythms of the body” expressed through the language of poetry.  In his own words, “poetry is full of the music of the body”.  He highlights the corporeal nature of poetry because, in his view, it fundamentally expresses “in a visceral way what it is to be human”. 

Rafael argues that listening to patients’ poems and writing poetry makes him a better doctor because he is more attuned to the “context” of an individual’s illness and their “interior story”.

Writing prompts for our Creative Meetup Group inspired by Rafael Campo

I participated in the June, online Creative Meetup sponsored by the Health Story Collaborative for writers-with-chronic-illness.  Our facilitator, Jennifer Crystal, read an extract from Boston Globe’s interview with Rafael.  When Jennifer introduced Rafael’s perspective on the human rhythm of poetry, it immediately struck a chord with me.

The interview extract served as the stimulus for our writing during the Meetup.  We were invited to write poetry or prose around the theme of the stimulus piece and the related writing prompts offered by Jennifer.  I chose to write a free-form poem about my experience of chronic illness while addressing both the writing prompts.

Writing prompts:

  1. What are the sounds and/or rhythms of your medical story?
  2. If you could hold a stethoscope up to your interior story, what would you want us to hear?

After we had completed 20 minutes of writing, Meetup participants shared their writing which was rich with metaphors to describe the sounds of their medical story and the nature of their “interior story”.   The metaphors employed by the participants focused on both disruptive/disturbing sounds and soothing sounds:

Metaphors of disruptive/disturbing sounds:

  • like war sounds
  • the storm that couldn’t kill
  • church bells ringing
  • loud chaotic concert
  • waves crashing
  • noisy, electronic hospital environment
  • like trumpet blasts.

Metaphors of soothing sounds:

  • sweet melody of harp
  • whispers of nature and beauty
  • soft pattern of soothing sounds
  • silence and solitude.

Poetry affords the opportunity to blend opposites (e.g. noise and silence) and change metaphors to break frames and create a new mindset.  Poetry has the power to transform our perspective.

My response to the writing prompts is reflected in the following poem:

The Sounds of My Medical Story

A story that lacks rhythm,
a staccato effect.
Flare-ups like trumpet blasts,
Disrupting and interrupting.
Periods of silence and solitude,
A soft pattern of soothing sounds.
Poetry as alchemy.

Reflection

I have been inspired by The Book of Alchemy authored by Suleika Jaouad in which she explores the art of journalling with 100 very accomplished contributors.  As Suleika was writing the final chapter of her book she received word that her aggressive leukemia had returned.  While preparing herself and her house for another extended hospital stay (for chemo and a third bone marrow transplant), she recalled the alchemy of writing a journal.  This led her to write a poem about how journalling alchemizes isolation and suffering and leads to new insights and a newly envisioned future.

In her poem, Suleika draws on multiple analogies to express how she has experienced the alchemy of journalling:

  • a companion to untangle the knots in her life
  • a source of memory and reverie
  • a teacher of mindfulness (through paying attention to the simple things in life)
  • a mirror for her past, present and future self
  • a refuge and hiding place and “finding place”
  • a means “to write her way through”
  • a co-creator of a future self.

On reading her poem about the alchemy of writing and journalling, I was inspired to produce an “erased poem”(in Haiku format) from her words:

An Ode to Poetry

Friend for company,
finding place for future self.
Create my way through.

As we grow in mindfulness through writing poetry, blogging or journalling, we can access our “interior story”, develop creative approaches to challenging situations (such as illness) and build a new level of acceptance of “what is”.  We can also draw inspiration from others by writing in community – accessing the power of storytelling and sharing.

Rafael reminds us that a poem is “crafted” around a theme and structural elements such as rhyme. rhythm, alliteration, metaphor, length, format, and language.  I found that I had to craft this blog post when I became overwhelmed by the volume of information about Rafael and his poetry.  In crafting the post, I needed to reduce the focus to one key area, find ways to integrate disparate sources and explore avenues for integrating the material.  The content and structure evolved through multiple edits and rewrites.

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Image by Olle August 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.

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.
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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.

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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.

How to Write with a Chronic Illness

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

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

Challenges for writers with chronic illness

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

  1. Symptoms –  writers with chronic illness have to deal with fluctuating energy, brain fog, and times when they are mentally or emotionally not feeling well.  Other symptoms may include constant pain, itching and/or swelling of joints (e.g. ankles, fingers, hands, arms) and debilitating symptoms such as migraines or breathing difficulties.  Sometimes, it may be impossible for the writer to sit or even to get out of bed.
  2. Low self-esteem – Sandra points out that there is a social stigma associated with having a chronic illness.  There may be emotional baggage arising from a lack of social status (lacking a job or having to constantly isolate to manage disabling symptoms).   Like many other writers, those with chronic illness feel that their voice is not worth hearing but for the chronic sufferers this self- story is amplified by the sense of not being an active contributor to family or society, but rather being a burden.
  3. Momentum – a key element in writing is momentum,  the ongoing impetus to pursue writing whether in the form of a blog, a short story, a novel, non-fiction work or a memoir.  Momentum provides energy and motivation but for the writer with chronic illness this is continually punctuated by disability, so there is a loss of momentum as a result of the fluctuation of symptoms.

Feelings experienced by writers with chronic illness

What is not often appreciated is that such writers can experience genuine grief – from loss of identity, family, friends, social activity and work (with its attendant loss of both a meaningful role and income).  This, in turn, impacts the sense of self-worth of writers with chronic illness.

There can be anger and ongoing frustration from not being able to do what you used to do with relative ease.  Sandra points out that the anger can arise from the knowledge that you “have to surrender to this thing [chronic illness] that you didn’t choose and is with you for the rest of your life”.  With this awareness, you can “lose trust in your own life”.

Sandra highlights the fact that you can lose a sense of agency, your underlying capacity to control your body, your thoughts, your responses to stimuli and your actions.   This can lead to a sense of helplessness and hopelessness – the loss of a meaningful existence and the capacity to change your debilitating situation.

Strategies to use while writing with a chronic illness

In her Summit presentation and interviews, Sandra proposed a number of practical ways to deal with the emotions, blockages and challenges of writing with a chronic illness:

  • Break free – a starting point is to break free from expectations, your own as well as that of others.  In an earlier post, I wrote about the tyranny of expectations – how they hold us back and lock us into ways of doing things.
  • Set your own pace – it is important to overcome rule-bound advice such as writing every day for a set time in a set place.  You have to determine your own writing pattern based on your capacity at the time.  It will be frustrating at times that you can’t write as much as you want, as often as you want or as fast as you want.  You have to get to the stage where your are “at peace with your own pace”.
  • Write where you are comfortable – you don’t have to sit at a desk to write, sometimes “sitting” itself may not be possible (as in Sandra’s experience).  You can lie down and use a mobile phone to write or use a dictation device.  You will have to overcome the self-talk about what “proper writers” do.
  • Practice self-compassion – avoid “beating up” on yourself for failing to achieve what you set out to achieve or for not meeting others’ expectations.  Self-compassion, kindness to yourself, can enable you to overcome the disabling effects of negative self-talk.
  • Write what you know – Sandra points out that people with a chronic illness have a “superpower” as writers.  Because of their experience of pain and loss, they know about “deep emotions and feelings and the hardship of life”.  These are the challenges that everyone meets in daily life, being part of the human condition.  This gives writers experiencing chronic illness a  distinct advantage.  Savannah, in her interview with Sandra, maintained that such writers have  “a rare edge that empowers them to connect with readers on a much deeper level”.   As Sandra herself pointed out, “books are conduits of uncomfortable emotions and explorations of how to deal with them”.
  • Start small – if you start small, you can start “right now”.  At the outset of her writing endeavours, Sandra found that she could not write a lengthy story such as a novel, so she started small by writing poems and short stories.  She acknowledged in her podcast interview that it took “a long time to be right with that” and live with the belief that it is worth the effort.  She found, however, by writing short stories across multiple genres, she improved her writing craft and gradually built the capacity to begin writing a novel.  She recognised that this novel-writing would take at least three years. Sandra is adopting the “start small” principle with her novel writing by treating each chapter as a short story.
  • Write a reflective poem – sometimes it is helpful to write a reflective poem to get your feelings out into the open and to help you identify “next steps”.  This process can also unearth hidden emotions that are acting as a blockage to your writing.
  • Join a support community – Sandra indicated that one of the things that helped her immensely was joining a support community.   In an interview for CanvasRebel, she expressed her strong belief in “the power of the online community of other people with chronic illness sharing their stories and beliefs”.  Her online community reinforced her strength in managing her illness and associated pain, made her feel as though she was “seen” and confirmed that her voice was unique and “deserves to be used and heard”.   These personal outcomes have been my experience with the Creative Meetups, hosted by the Health Story Collaborative created by Annie Brewster, author of The Healing Power of Storytelling.

Sandra provides a free guide on How to Be a Writer When You Have a Chronic Illness on her website.  She has also started an online support community for writers with chronic illness – The Mighty Spoonies Club.  The name of the community is based on the “spoon theory metaphor” of chronic illness.

Reflection

I joined the online Creative Meetup group nearly two years ago and found that the supportive environment and writing exercises helped me “to access and release emotions” and to stimulate my creative expression in the form of poetry.   An added benefit is that I am sub-consciously working on my memoir as I explore and share my life story.

Reflecting and connecting with others who are experiencing their own chronic illness has been very supportive.   Their shared stories and insightful writing provides me with encouragement and practical strategies to deal with the challenges inherent in my chronic illness.

At our February 2025 Meetup, Jennifer Crystal, our facilitator, introduced a poem by Mary Oliver as a stimulus for our reflection and writing.  The poem, The Uses of Sorrow, speaks of receiving “a box full of darkness” but being able to understand over time that “this, too, was a gift”.  In our writing segment, we explored the “gift of illness”.

Illness provides a personal growth experience.  I’ve had to revisit my assumptions, self-image and goals.  Illness helped me to appreciate the small things in life that I often take for granted – that I can see, walk, run, play tennis, reflect, research and write. 

It helped me to realise that my identity is not tied to an image of myself as a very fit, competent tennis player.  Illness helped me to understand and accept the nature of the human condition – it’s vulnerabilities and frailties and undulating character.

I have been able to share with other people who are experiencing a healing journey.  I’ve met some wonderful people who are wise, resourceful and resilient as a result of  their experience of managing pain and losses.

Illness has helped me to become more compassionate towards others – to appreciate the pain, sorrow and distress that others are experiencing.  It has helped me to keep things in perspective and to savour the present moment.  It has forced me to be proactive, resourceful and engaged.

There are times when chronic illness has felt more like an unwanted gift – not desired or returnable.  Despite these setbacks, there have been hidden possibilities that have helped me to flourish and enrich my life and my writing.  As I grow in mindfulness through reflection, writing and storytelling, I am able to progressively develop agency, resilience and creativity.

I wrote the following poem after reflecting on the positive aspects of my illness and what it has contributed to my quality of life:

The Gift of Illness

Illness is a hidden gift,
with a rich lode of rewards,
that need to be mined,
in the fire of pain and loss.

Challenging assumptions,
reshaping identity,
acknowledging the human condition,
growing in awareness of self.

Opening to others,
appreciating life,
learning compassion,
disclosing feelings.

Discovering poetic expression,
rekindling creativity,
energising writing,
grounding in the present moment.

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Image by Leandro De Carvalho from Pixabay

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

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

Adopting a Holistic Approach to MCAS and Histamine Intolerance

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

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

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

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

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

The increasing medical complexity of chronic illness

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

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

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

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

A holistic approach to MCAS and histamine intolerance

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

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

Addressing Root Causes of MCAS

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

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

Consuming the Right Foods and Supplements

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

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

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

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

Supporting the wiring of the body

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

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

Reflection

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

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

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

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

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

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

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Image by Gerd Altmann from Pixabay

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

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

Wintering: Finding Light in the Darkness

I belong to an online group that meets once a month to share their stories of chronic illness and healing, both orally and in writing.  These Creative Meetups are sponsored by the Health Story Collaborative (HSC) and are designed to enable participants to access the healing power of storytelling.

In our December Meetup,  Jennifer Harris (our facilitator) introduced the theme of the winter solstice and the related concept of moving from darkness to light.  The winter solstice is the time of the year when we experience the longest night and shortest day, signalling the transition from Winter to Spring.  The event occurs at different times in the Northern Hemisphere (December) and the Southern Hemisphere (June).

Throughout history, the symbolism of the transition from darkness to light, represented by the winter solstice, has been celebrated around the world through rituals and festivals.  There is also a very rich core of poetic expression around the theme of the winter solstice revealing the embedded sub-themes of rest, recuperation, replenishment and transformation.

Winter too is a time of transition for animal and plant life.  Animals, for example, often withdraw from the bitter cold of winter and undergo some change in their habitat, feeding and outward appearance.  They will prepare and change to meet the challenge of winter and, in some cases,  hibernate so that they can survive.

The challenge of winter and wintering – moving from darkness to light

Katherine May, captures the essence of the challenge of transitioning from darkness to light in her book, Wintering: The power of rest and retreat in difficult times.  She recounts her personal story of dealing with darkness in her life and her struggle to discover the light that would lead to her transformation.  Katherine initially treated the advent of darkness in her life as a source of humiliation but came to realise that the darkness, like the transition from day to night, is “inevitable”.

Darkness for Katherine descended in the form of illness- undiagnosed autism and depression, as well as death in the family.  She found the resultant involuntary period “lonely and painful”.   Her tendency, like that of many others, was to withdraw, hide from public view and “show a brave face” whenever she could not avoid appearing in public.    

Ivan Cleary, Head Coach of the Penrith NRL team, who suffered from depression during his football coaching career, found it a “humbling experience” and sought to hide the fact and withdraw from interaction with people.  However, he found strong social support through his wife, Bec, and family members.  After his second bout of depression, he learned to share his story with others and to model openness about his condition for the welfare of his players.  Katherine, too, found that sharing her story, rather than hiding away, was healing.  In telling her story to others, she found that there was a “shared thread in their story and mine”.

Learning to invite winter in

After a period of resistance, Katherine learned that “wintering” was a process of reflection and renewal and she gained a sense of “its length and breadth”.  She began to understand that wintering was “not the death of a life cycle but its crucible”.   She was able to recognise the wintering process and “engage with it mindfully and even cherish it”. 

Katherine realised that inviting the winter in involved acceptance of her current health condition (and the nature of the human condition) while making adjustments to achieve ”a comfortable way to live till Spring”.  She found that wintering could create insightful and profound moments in her life.  Katherine concluded that “wisdom resides with those who have wintered”.  Novelist Olga Tokarczuk reinforces this view in her book, Drive Your Plow Over the Bones of the Dead, when she has a key character conclude that “sometimes I think that only the sick are truly healthy”.

My own recent darkness

Over the past month, I have experienced a personal winter and attendant darkness.  My daily life was upended by several concurrent events:

  • A friend and colleague dying of cancer
  • A close friend and co-author/co-facilitator (over 16 years) suffering a major stroke
  • A serious illness of one of my adult sons
  • A major flare-up of my MCAS-fuelled dermatitis.

As a result of these events, I have experienced grief, sadness, frustration, panic, and debilitation.  The social support of my Creative Meetup group, where I have shared my story online, has helped me cope with these challenges.  I am slowly emerging from the darkness as I acknowledge and accept my condition and begin to reach out to let the light in.

 Letting the light in

During our Creative Meetup session focused on the winter solstice theme, Jennifer suggested that we write a letter to ourself, our body and/or the year ahead about what it means to let the light in.  I found that I was able to identify some ways that the light was beginning to penetrate my darkness:

  • Discovered the power of intentional breathing  
  • Became aware of a new hyper-sensitivity to soy products
  • Discovered that an infection from a tick bite contributed to my flare-up (resulting in the MMA allergy – Mammalian Meat Allergy)
  • Gained a referral to a specialist allergist to understand and manage my MCAS
  • Received strong support, TLC and understanding from my wife
  • Revisited the healing power of nature through Louie Schwartzberg’s visual meditations incorporated in 21 Days of Gratitude
  • Drew on the inspiration of my son’s resilience
  • Obtained medical assistance from a hospital Emergency Department.

Reflection

It appears that wintering is a natural part of the human condition.  Our normal tendency is to deny our condition and to hide it from public view, whatever form our darkness takes at different stages of our life cycle. However, if we engage our winter mindfully and embrace its learning opportunities, we can experience renewal and growth, increasingly realizing our human potential.  Katherine reminds us that there can be “a quick onset” of winter or a “slow drip”.  Whatever way it occurs, we can use the inherent challenge of darkness to grow in mindfulness and emerge into the light, wiser and more resilient. 

I created the following poem after reflecting on our discussion of the winter solstice and reading Katherine’s book on “Wintering”:

Letting the Light In

The darkness engulfs me:
a major stroke suffered by a close friend,
the death of a colleague,
serious illness of a relative,
MCAS flare up – dermatitis gone mad,
the light blocked out.

Wintering brings wisdom, resilience and regeneration:
without winter, there is no transformation,
without breath, there is no life,
without darkness, there is no transition to light,
without challenge, there is no growth,
without sickness, there is little wisdom.

Letting the light in:
accepting what is,
seeking out glimmers,
searching out options,
acknowledging the power within and without,
accessing agency to accelerate healing,
admiring the resilience of the healing journey of others,
savouring accomplishments achieved under difficulties,
connecting with others to gain strength.

Being gentle with myself:
sustaining my heart in the midst of heartlessness,
searching for hope in a poem,
seeking intimacy and connection,
finding sustenance in  writing poetry,
expressing chronic pain and frustration,
sharing my story with others,
adjusting my expectations,
savouring freedom and life,
meditating on nature.

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Image Source: 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.