Creative Meetup – Grow Mindfulness

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:

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.
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.
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:

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

Feelings experienced by writers with chronic illness

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

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

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

Strategies to use while writing with a chronic illness

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

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

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

Reflection

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

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

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

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

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

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

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

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

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

The Gift of Illness

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

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

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

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

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Image by Leandro De Carvalho from Pixabay

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

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

Adopting a Holistic Approach to MCAS and Histamine Intolerance

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

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

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

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

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

The increasing medical complexity of chronic illness

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

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

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

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

A holistic approach to MCAS and histamine intolerance

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

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

Addressing Root Causes of MCAS

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

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

Consuming the Right Foods and Supplements

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

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

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

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

Supporting the wiring of the body

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

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

Reflection

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

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

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

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

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

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

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Image by Gerd Altmann from Pixabay

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

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

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.

Breathe for Health

James Nestor’s book, Breath: The New Science of a Lost Art, encourages us to breathe with intention. Drawing on the latest research in physiology, psychology, biochemistry and pulmonology (specialising in the respiratory system, including lungs and airways) to put forward the case for us to make a concerted effort to improve our breathing. He argues, with solid evidence, that deficient breathing underlies many health issues such as hypertension, migraine, asthma, anxiety, depression, scoliosis, and allergy. James even provides an additional bibliography of research he has undertaken beyond the publication of his book.

James describes in his book how he often used himself as a research subject, on occasions accompanied by fellow researcher, Anders Olsson. In a video podcast interview, Anders describes their joint “Mouth Breathing Experiment”. He contends as a result of research with athletes that “mouth breathing can put the body into a state of stress that can make us more quickly fatigued and sap athletic performance”.

Both James and Anders advocate for nose breathing over mouth breathing and explore the benefits of the former along with the health issues caused by the latter. James’ book draws on a wealth of research to support their position in advocating nose breathing. James also explores the benefits of efficient exhaling, holding your breath and chewing effectively.

Based on his extensive research, James contends in his book that breathing techniques developed over thousands of years have multiple benefits – they provide us with the means to balance our minds and moods, boost blood flow, straighten our bodies and stretch our lungs. He maintains that, in consequence, these breathing practices enable us “to sleep better, run faster, swim deeper, live longer, end evolve further”.

Breathing exercises

James draws on ancient breathing practices to provide a compendium of breathing exercises that can be undertaken by anyone. The written descriptions of these practices provided in his book are supported by breathing video tutorials on James’s website.

Some of the breathing practices covered in his book include:

Yogic breathing (also described in a video on his website) – involving consciously inhaling into the stomach, lower rib cage and the chest followed by exhaling in the opposite sequence.
Box breathing – for achieving calm and focus in situations that are tense. This entails a sequence of inhaling, holding, exhaling and holding, each to a count of four.
Resonant breathing – achieves coherence between lungs, heart and circulation thus maximising the body’s performance. Fundamentally, this breathing practice involves inhaling softly for 5.5 seconds and exhaling for the same period.
Breathing coordination – increases the efficiency of the respiratory system. Involves breathing through the nose for a count of ten (counting out softly as you go), then doing a similar process for exhaling (allowing a quiet tapering of the voice as the lung completely empties).

Reflection

James’ book highlights the fact that we unconsciously breathe 25,000 times day and we often breathe too quickly, too shallowly and without resting in a holding pattern – all of which places strain on our body and our individual organs. As we grow in mindfulness through breathing with intention, we can attain calm, clarity and good health.

I wrote the following poem after reflecting on James’ book and our Creative Meetup discussion of “breathing”:

Until Our Last Breath

They talk of…
“The War to End All Wars”.
Yet we go on killing others and ourselves.
Life goes on…until it doesn’t.

Waves approach and recede,
slapping the shore,
with echoes of times past,
the rhythm of life.

A new day dawning,
the sun rises lighting the sky,
birds twitter,
the sky changes hues.

We breathe in and out,
chest and abdomen rising and falling,
life-giving energy and healing,
we take for granted.

Yet in slowing and lessening our breathing,
we heal ourselves,
extend our lives,
grow our insight and wisdom.

Breath is the ease of life
until we struggle,
obstructed by our ignorance,
overcome by the vicissitudes of living.

Breath is our life,
until our last breath.

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Image by Tung Lam from Pixabay

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

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

Managing Chronic Illness

The November Creative Meetup was facilitated by Jennifer Crystal, author of One Tick Stopped the Clock. Jennifer is a “story coach” with the Health Story Collaborative which hosts the online Meetups. She also conducts the Writing to Heal Immersive at the Grubb Street Center for Creative Writing. Jennifer has a long history in writing about her experience with Lyme Disease and sharing her knowledge with others who have contracted the disease and other tick-born illnesses. Since 2013, she has been the writer of a weekly column for the Global Lyme Alliance and her enlightening and inspiring blog posts can be found on the Alliance website.

Jennifer’s medical journey

Jennifer was bitten by a tick on a camp when she was 19 years old but had to experience many frustrating years of misdiagnosis. At 25 years of age, she was finally diagnosed with Lyme Disease which led to the Epstein-Barr virus (EBV) infection that causes Mononucleosis. Jennifer was bed-ridden and experienced multiple symptoms that doctors had not been able to explain. In her period of misdiagnosis, she was variously told “to rest”, “eat things close to the ground” (e.g. chicken and turkey), and “talk about your feelings” (assuming that the illness was psychosomatic, not real). Grace Currey from Australia (bitten by a tick in the US) provides a vivid description of what it was like to have Lyme disease that was not recognised by medical professionals in her home country.

Jennifer Crystal had a five-year journey to wellness and remission of the Lyme disease. However, she then had to experience a “searing relapse” and eventually found a new balance and developed her teaching-coaching career. Earlier, she was unable to commit to relief teaching because of her inability to guarantee that she could manage physically or emotionally. She is now a leading proponent of the multiple benefits of sharing your health story and teaches people how to write-to-heal.

Stimulus questions during the Creative Meetup

Typically the Creative Meetups begin with a writing stimulus of some kind such as a poem, article or book extract. Jennifer introduced herself to the group and read a few brief sections from her book which served as a basis for creative writing by group members and story sharing in the group. Jennifer’s stimulus questions flowed naturally from her book extracts:

Write about a time when you felt brushed off and what you wished that person could have seen on the inside, or
Pick a single object related to your story and write about it in a poem or prose – see where it takes you!

These were both challenging and fruitful questions that led to some insightful, creative writing by the group and follow-on sharing and discussion. The level of creativity, resilience and insight in the group always amazes me. The Creative Meetup process illustrates the healing power of storytelling and demonstrates the benefits of this approach to “narrative medicine”.

Jennifer’s healing strategies

Besides the medical solution of months of antibiotics, Jennifer identified the need to change her mindset about her chronic illness. She adopted a number of strategies to achieve this:

Integrating chronic illness into her life – she established a “new normal” which addressed the question, “How to live well in the context of a chronic illness?”. This very much involved self-acceptance and avoiding denial. It also meant acknowledging that there was “no going back”.
Shedding an identity made impossible by the chronic illness – Jennifer’s dream was to become a skiing instructor – a role very much tied up with her self-image and personal goals. This identity was no longer possible given her disabilities precipitated by her chronic illness. She had to shed her ”skier instructor identity” and find a new sense of self. She asked herself the question, “if I can’t [follow this dream], who am I?”. This required her to value herself for who she was, not who she might be or could become. She recognised that she was still a caring person, who had friends that she connected with, and was still a writer.
Pacing herself – slowing down and recognising that she needed frequent sleep and suffered from brain fog and other debilitating symptoms. It meant napping each day, taking on freelance writing, listening to her body and sharing the load by moving in with her parents. It also meant building stamina gradually, not trying to achieve her previous “workaholic” status. It required her to accept that things would take much longer than previously to complete and that healing from chronic illness is not a linear process, but an undulating journey of indeterminate length.
Learning to say “no” – part of self-care during chronic illness is to being able to say “no”. Jennifer reiterated the view that “No is a complete sentence”. Saying “no” enables us to set personal boundaries. Jennifer encouraged us not to fall into the “explanation trap”, which itself consumes energy and can lead to exhaustion and frustration. We don’t have to explain everything or give a reason for our “no”. She suggested that we could use her phrase, “No, that would not be healthy for me now”.
Writing – the process of writing enables our inner landscape to become outer, to express the feelings that are hidden inside us. Writing can change our mindset and create freedom. Initially, Jennifer could not write about her illness and all that it entailed, so she concentrated on writing to her friends and family. Eventually, she was able to address the issues of her chronic illness, including the challenge of “not being seen” or understood. She found that writing enabled her to be more honest and vulnerable. It helped other people to see the effects of chronic illness and to become more compassionate in their interactions with others.
Joining a community – the Health Story Collaborative (HSC), for example, provides a community where people are encouraged to share their health stories either verbally or in writing. Their Creative Meetups are one form of regular online interaction in a community that provides social support and encouragement. Jennifer found that undertaking a course in creative writing enabled her to share her chronic illness with her classmates who did not judge her, were in a learning mode too and were exploring making the “inner world” visible. She also noticed that people were better able to assimilate information about an individual’s chronic illness when it was shared in written form.

Reflection

In the discussion that followed the creative writing of participants, one major issue emerged. This involved people not understanding the hurt that their well-intentioned words can cause to someone who is suffering from chronic illness. Comments such as “You look good” or “You don’t look ill to me” can be particularly hurtful when someone with a chronic illness has gone to the trouble (despite the difficulty involved) to “dress up” or put on a “façade” when they are going out in public (leaving their bed and track pants behind)!

The well-intentioned comments can be experienced as “devaluing” the experience of a person with a chronic illness. It can also trigger memories of mistreatment by the medical practitioners who were unable to relate the presenting symptoms to their “medical cookbook”. Annie Brewster (founder of HSC) contends that many patients with chronic illness experience “frustration, invalidation and exhaustion” when their ongoing symptoms don’t fit neatly into the “diagnostic algorithms” of medical practitioners.

As we grow in mindfulness through reflection and sharing our stories, we can increase our sensitivity to the situation and needs of others and experience what Jennifer describes as developing “greater compassion for others”.

During the creative writing segment of our Meetup with Jennifer I wrote the following poem to reflect some of the earlier sharing and my own experience of dealing with medical professionals who consider the existence of MCAS (Mast Cell Activation Syndrome – my chronic illness) as controversial as the concept of Lyme disease:

Validation and Accommodation

There’s no place for me in cookbook medicine –
so I don’t have an illness,
it’s all in my head.

Until something happens that is considered serious –
then perspectives change.

I appreciate my body –
the millions of daily decisions,
the miracle of breath,
the ability to write, walk, run and play tennis.

Now my body seems to be letting me down –
treating good food as invaders,
hypervigilant, ever on the alert.

My new bodily reality –
reflecting the dark and light of nature,
creating a challenge to accommodate the “new normal”,
with its remissions and relapses,
enabling and disabling in unpredictable ways.

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Image by Márta Valentínyi from Pixabay

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

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

Breathing with Intention

In our October Creative Meetup we focused on the theme of “breath” catalyzed, in part, by James Nestor’s book, Breath: The New Science of a Lost Art. In our discussion, various poems about “breath” were highlighted. These included Mary Oliver’s poem, I Am Breathing and Rumi’s poem Only Breath where he notes, “first, last, outer, inner, only that breath breathing ”. The poems and James’ book reinforce the essential nature of breathing for human existence – at every moment that we are alive, we are breathing.

We consciously “hold our breath” for many reasons. It may be to swim under water, to steady ourselves before playing a tennis shot or as part of a mindful breathing exercise. However, we often hold our breath unconsciously when we experience fear, anxiety, anger or shock. This was made clear by an exercise we undertook as part of the Creative Meetup. We were asked to think of a time when we held our breath and explore what happened at the time in terms of bodily sensations and emotions.

What immediately came to mind for me was a car accident that I experienced when I was 12 years old. I was travelling with my family and my father was driving us home. At one moment, I looked out the side window of my passenger seat to observe a large car approaching on the left (we were in a small car on a main road). It was as if time stood still as I realised that the oncoming car was going to crash into us and instinctively I held my breath waiting for the impact. We were hit on my mother’s passenger side and ended up upside down at the foot of a four metre embankment. I can’t remember when I exhaled but I was aware that my breathing was erratic and I was in shock.

Learning to breathe with intention

James Nestor recounts how he undertook research with free divers in Greece. These divers were able to dive to incredible depths (up to 300 feet) while holding their breath (not assisted by any breathing apparatus). They could dive to depths that scientists thought were not possible for human beings. What James learned was that these divers considered breathing a conscious act (not unconscious as most of us breathe in our daily lives). For the divers, breathing is a mechanism to achieve depth in diving and they intentionally “coax their lungs to work harder” so that they are able “to tap the pulmonary capabilities that the rest of us ignore”. The divers suggested that anyone who is healthy can achieve what they achieve if they put in the time and energy “to master the art of breathing”.

In talking to a range of divers, James learned that there are multiple ways to breathe and that different ways to breathe “will affect our bodies differently”. The divers explained that various breathing methods can enhance our brains, lengthen our life span or improve our physical and mental health. Other ways we breathe can have the opposite effects. James discovered that the secret to nourishing our brains and enhancing our health is to breathe with intention.

James expanded his personal interview research with divers by exploring the published literature on breathing including books on regulating breathing that were 400 years old. As James points out, many cultures over the centuries have focused on the art of breathing and its benefits, e.g. Buddhists use conscious breathing to reach higher levels of awareness and to achieve longevity. The scientific literature reinforces the view that how we breathe can affect the systems of the body, e.g. our immune and digestive systems. Some of the research, for example, showed that “asthma, anxiety and even hypertension, and psoriasis” could be reversed or reduced by changing the way we breathe.

James’ conclusion from all his research is that we can use conscious breathing “to hack into our nervous system and control our immune response and restore health”. In his book , he sets about providing exercises to enable us to learn to breathe with intention so that we can reach our potential in terms of our mental and physical health.

Reflection

As I listened to the audiobook version of James’ book, Breath, I began to realise that intentional breathing as promoted by him could help me alleviate my MCAS difficulties – which are fundamentally a result of an over-reactive immune system. Calming my immune system through the breathing exercises contained in each chapter of James’ book could enable me to expand my food options, which at the moment are severely limited because of my food sensitivity responses (such as rash, hives, headaches, and nausea).

Many mindfulness teachers demonstrate that we can grow in mindfulness through conscious breathing which enables us to become grounded, calm the mind and body, expand our lung capacity and increase our focus and clarity of thinking.

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Image by John Hain from Pixabay

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

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

Autumn: A Time for Reflection and Shedding

The Health Story Collaborative sponsors a monthly, online Creative Meetup for people anywhere in the world who are experiencing chronic illness or disability. The Meetup via Zoom is facilitated and is designed to enable participants to spend time writing while in a supportive community and, in the process, “to access and release our emotions, personal stories, and creative spirits”. The Health Story Collaborative was created by Dr. Annie Brewster, author of The Healing Power of Storytelling: Using Personal Narrative to Navigate Illness, Trauma and Loss.

During our Creative Meetup session in September, Jennifer Harris (our facilitator) guided us in reflecting on Autumn and the significance of the season in terms of harvesting and shedding. By way of stimulus, Jennifer quoted Mary Oliver’s Fall Song and the words of F. Scott Fitzgerald, “Life starts all over again when it gets crisp in the fall”. This led to a session for our creative writing around the themes of “harvesting” and “shedding”.

Autumnal reflections

The four seasons of the year are often used to represent times of transition. Vivaldi’s Four Seasons – “four violin concerti giving musical expression to a season of the year” – epitomises the seasonal transitions we can observe in temperature, the migration of birds, changes in landscapes and in human behaviour. Autumn is associated with harvesting, the gathering of food and growing fur by animals to prepare for the impending winter and significant temperature/weather changes. Many cultures celebrate the arrival of autumn with rites and rituals, especially the Autumnal Equinox (when day and night are equal in length) occurring at the start of Fall (Autumn).

Autumnal rites and rituals often signify change and harvesting. In Japan, the National Autumnal Equinox holiday is a time dedicated to paying respect to “deceased parents, grandparents, and other family members”. In India, Autumn is a time of cleansing. There are various rituals involving shedding to reflect the falling of leaves and regeneration during this season.

Reflections on harvesting

Harvesting is a time of reaping what you have sown. Our reflections focused on the metaphorical meaning of harvesting in terms of abundance or achievements realised throughout the year. We were asked to reflect on blessings we experienced, tending/nurturing received, projects accomplished, and personal growth. Associated with these reflections was encouragement to express gratitude for what we had harvested in our personal life.

I noted the following in terms of my “harvest” during the 2024 year:

Joined the Creative Meetup group of the Health Story Collaborative and participated in the monthly sessions
Integrated the themes and discussion of the Meetups into my blog posts
Wrote poems that reflected the themes of the Meetups and related blog posts – giving creative expression to my feelings
Conceived and structured a book on management – for co-authoring with my colleague (co-facilitator of 80 longitudinal manager development programs, conducted over 16 years)
Organised a publisher for our book and signed a contract for assisted self-publishing
Completed the first draft of 20 chapters of our book on management
Wrote the following posts exploring ways to express gratitude and sharing my gratitude for what I have experienced and am experiencing:

In our discussion of harvesting we acknowledged that it was okay to “harvest less”, given that all participants in the Meetups are people suffering from chronic illness or disability who often experience setbacks in their recovery.

Reflections on Shedding

During autumn we can observe the trees and plants shedding their leaves and fertilising the soil with the decaying material – death generates new life.

There are many things that we can shed if they are holding us back from realising our potential – e.g. identity, old beliefs or expectations. During the Creative Meetup I became aware of the unrealistic expectations I was placing on myself in terms of output for my co-authored book on management. The expectations were not coming from my co-author who is currently consumed by her caring role for an ill relative. The expectations are my own – setting a timeline and trying to determine a daily output.

What I realised is that my personal output expectations needed to be shed in the light of the continuous disruption I am experiencing in relation to health-related issues and medical testing. I have been losing momentum in my writing because of the continuous need to undertake important health-related tasks. I have to accept that this is my current situation and shed my expectations about high levels of output in my writing. I have already changed my expectations of the frequency with which I produce a blog post. However, to date, I have failed to adjust my expectations concerning writing my co-authored book.

My participation in the Creative Meetup with the focus on the autumnal shedding theme, highlighted the need for me to shed my current expectations about output for our book in order to create the freedom and space for other important things such as maintaining good health and my connections with family and friends.

Reflection – a poem

The seasons can help us to grow in mindfulness by enhancing our observation of what is changing around us and cultivating gratitude for what we have experienced and achieved. Autumn promotes reflection on what we have harvested and what we need to shed. I wrote the following poem to reflect the process of shedding:

Autumnal Shedding

Autumn leaves falling softly
Silently seeking the soil.
Shaken from their anchor
Shrivelled, shrunken, distorted shapes.
Shedding, signalling rebirth
Death begets new life.
New growth, new possibilities
Transcending the past.

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Image by Sven Lachmann from Pixabay

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

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

Deprivation Can Engender Gratitude

We take so much for granted – that we can breathe, walk, talk, see, and hear. Deprivation makes us aware how privileged we are to have these functions and other functions such as choosing what we want to eat, achieving basic elimination functions with ease or being able to write or key (not encumbered by arthritic pain and distortion). The recent Reversing Mast Cell Activation and Histamine Intolerance Summit 2.0 brought home the stark realities of how Mast Cell Activation Syndrome (MCAS) and/or histamine intolerance can impact the quality of our life.

As I listened to various expert speakers who themselves had experienced these conditions, I became more aware of what I do have in terms of quality of life and daily functions. Some of the speakers had periods when they were super-sensitive to smells (such as the perfume of their daughter), unable to eat a wide range of foods because of allergies) or were sensitive to mold in their homes. Others spoke of the symptoms of histamine intolerance and the impact this had on their daily life and their capacity to choose what they would like to eat.

Hope and social support

Parental and social support build hope and agency and enable people with chronic illness or disability to rise above their health challenges and achieve a successful recovery, often beyond peoples’ wildest dreams.

Alexa Leary’s story – from tragedy to triumph

The recovery story of Alexa Leary, Australian Paralympic Swimmer destined for Paris 2024 Olympic Games, is a hugely inspiring account of how parental support and social support have helped her to achieve her goals. Three years ago Alexa had a very serious accident on her bike as a world-class triathlete – causing traumatic brain injury and multiple other significant injuries. She was not expected to live, and, even if she did survive, she was not expected to be able to talk or walk. Alexa’s parents set aside their own lives and spent six months by her bedside in hospital to support her recovery.

Alexa’s rehabilitation efforts are starkly illustrated in the video story, Triumph Over Tragedy. Her incredible sporting accomplishments since the accident reinforces the value of the social support she received from organisations such as the global Pho3nix Foundation, dedicated to helping young people through sport and activity to develop a “sense of purpose, focus and possibility”. Alexa was a participant in their Athlete Program designed to enable underfunded, aspiring Paralympics and Olympic athletes to compete in the Olympic Games. When sharing her story of recovery through radio, television and social media, Alexa emphasised the critical role music played in her life and recovery.

Specialised Support through ADDA

Duane Gordon, President of Attention Deficit Disorder Association (ADDA), elaborates on the benefits of social support and shares multiple stories of how ADDA’s many support groups have facilitated the recovery of its members. Tom, an accomplished engineer, experienced overwhelm in everyday tasks such as shopping but was able to gain support and ADHD-friendly strategies through ADDA’s Healthy Habits and ADHD Brain Group. People with ADHD typically experience relationship difficulties but ADDA’s support group Loving and Living with ADHD: Partners Connecting helped Mark and his partner to rise above the challenges of this condition and strengthen their relationship. ADDA’s support group, ADHD @ Work> Survive and Thrive Support Group, helped James recover from the loss of his job caused by ADHD challenges such as confusion, meeting deadlines and remembering tasks.

Reflection

I was recently diagnosed with early stage, normal tension Glaucoma which has reduced my peripheral vision. I am undertaking a series of tests to determine what the cause is and what kind of treatment is required. The diagnosis has forced me to face the prospect of increased loss of sight, retraction of my driver’s licence and loss of the associated independence. The social support provided by the Creative Meetups, sponsored by the Health Story Collaborative, is particularly critical at this point in time.

I wrote the following poem as a way of reflecting on my present circumstances with the possibility of increased loss of vision:

Losing Sight

Sight lighting my way,
expanding my horizons,
disclosing people and cultures,
revealing nature’s beauty,
enabling enjoyable activity.

Playing a game of tennis,
writing a book,
driving a car,
watching a video,
reading a book,
creating a poem,
developing a blog.

Encroaching blackness,
moving in from the edges.
Losing sight a real prospect.
Rescinding of independence.
Storing recollections for future reference.

A long-playing internal videotape,
of my best tennis shots,
played over the years.
Now categorised by tennis stroke –
forehand, backhand, volley, serve and smash.

A rich palette of memories of nature’s beauty –
blue and white, purple and brown,
red and orange, yellow and green,
grey and black.

Moving from sight to sound,
from reading to listening,
from writing to recording,
from driving to walking.

Feeling my way.
Testing to understand.
Exploring my options.
Appreciating what I do have – while I have it.

As we grow in mindfulness through reflection, meditation and time spent in nature, we can increase our appreciation and gratitude, fortify our hope and strengthen our resilience.

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Image by Shan from Pixabay

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

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

Managing Adult ADHD

Recently BrainWorx launched a virtual interview series that they called the ADHD Toolbox Live with more than 20 speakers involving both live and prerecorded interviews. Some of these highly informative interviews are available on the BrainWorx blog. The Mayo Clinic explains that Attention-Deficit/Hyperactivity Disorder (ADHD) is a chronic condition in some children and adults that cannot be cured but can be managed through behavioural interventions and medication.

Mel Robbins in her podcast, Six Surprising Signs of Adult ADHD, draws on her extensive research and interviews with leading ADHD experts to explain that ADHD is “a chronic neurobiological disorder” that has an impact on the brain both structurally and chemically and can affect how the brain communicates amongst its various parts.

Duane Gordon, President of the Attention Deficit Disorder Association (ADDA), explained in his BrainWorx Toolbox presentation that ADHD results in “differences in brain development” that can negatively impact capacity to pay attention, to exercise self-control and to remain inactive (“being hyperactive” – a description often given to “naughty children” at school).

Misconceptions about ADHD

Duane was at pains to explain that there are many misconceptions/myths surrounding ADHD. These misconceptions include:

The belief that ADHD is only a children’s disorder – increasingly adults are diagnosed with it when an adult (however, research shows that ADHD is formed before 12 years of age)
The assumption that people with ADHD “lack intelligence” (the opposite is often true)
The exhortation that people with ADHD should just “try harder” (which Duane explains is the most damaging of all misconceptions because it attacks a person’s self-esteem as they are already doing everything in their power to “keep afloat” with everyday demands).
The perception that ADHD is a “little inconvenient” (Duane explains , however, that ADHD can deeply affect every facet of your life – such as financial health, career and relationships). Duane, who himself has ADHD, comments that it “digs into every aspect of your life”.

Symptoms of Adult ADHD

In her podcast of the six surprising signs of adult ADHD, Mel Robbins identifies the following key characteristics:

Hyperfocus – ability to focus intensively in particular settings (e.g. when working on a creative project or writing) despite an inability to focus in other settings (e.g. with children, hyper-focus on computer games but inability to pay attention in class at school)
Difficulty controlling emotions – can be impulsive, easily frustrated and reactive
A tendency to shop impulsively and over-spend – Mel cites Dr. Amen who explains that the compulsive shopping or drug and alcohol abuse can be an attempt to “stimulate the brain with a dopamine rush” (a chemical that has a role in learning, attention & mood)
Time management problems reflected in lateness, being the last person to arrive
Capacity to function at a high level – workaholism (including “all-nighters”) and entrepreneurial success
Highly self-critical – constantly “beating up” on oneself for “disappointing everyone”.

Mel, however, drawing on the work of Dr. Ellen Littman and others who co-authored the book, Understanding Girls with ADHD, points out that the ADHD symptoms of girls are often different to those of boys. She explains that this contributes to the fact that adult women are often diagnosed with ADHD later than men. Mel herself was diagnosed with ADHD at the age of 47 (by accident when her son was formally diagnosed with the same condition). She explains that the major difference between women (girls) and men (boys) with ADHD is that the symptoms are typically internal rather than external.

Boys, for example (like her son), express their symptoms physically such as impulsive physical behaviour, fidgeting, inability to keep still, inability to pay attention and concentrate, easily distracted, continuous leg movement and a tendency to interrupt proceedings (such as classes). Girls/women (like herself) tend to daydream and are disorganised and forgetful, and are hard on themselves, seeing their ADHD as a “character flaw”.

Mel notes, again drawing on the work of Dr. Littman and colleagues, that the outcomes for girls tend to be worse than those for boys – resulting in low-self-esteem, self-loathing, eating disorders, and suicidal ideation. In common with boys, girls can experience “overwhelm” but Ellen Littman contends that outcomes for girls (and women) can be “horrendous”.

Managing Adult ADHD

Duane argues that a starting point is to “embrace” your ADHD. By this, he means to “look for aspects that make you special” such as storytelling, leadership capability, capacity for public speaking and creativity. He points out that some of the world’s leading entrepreneurs have been diagnosed with ADHD as adults. He explains that when people are first diagnosed as adults they tend to experience shock, feel shame, resist the diagnosis and tend to become absorbed in regret. He notes, however, that many of the forward-looking organisations are seeking out people who are neuro-divergent because they “think outside the box”.

Duane was diagnosed with ADHD as an adult in similar circumstances to those of Mel – his own diagnosis was accidental when his daughter was diagnosed with ADHD. He explained that when he was first diagnosed with ADHD he did not have a phone number on his business card because he could not talk to people – now as President of ADDA he talks to people all over the world about the condition and its personal and social impacts.

Duane strongly advocates for self-compassion, which involves not only self-acceptance but also self-forgiveness. He explains that there is often a stigma attached to ADHD because “neuro-typical” people tend to attach negative meanings to the ADHD condition, they are blind to the unique talents of those people who are “neuro-divergent”. Kevin Bailey, a Certified ADHD Coach, argues in his ADHD Toolbox interview, that we should acknowledge that “we’re all perfectly imperfect” and suggests that adults with ADHD could employ his strategy of acting “as fast as I can, as slow as I need”. His interview with the Wired for Winning video podcast relates his experience of “otherness” as a neuro-diverse, black person with ADHD and Autism.

Duane counsels us that everyone’s ADHD is different – he comments that his daughter’s ADHD “is different to mine”. Accordingly, it is not possible to offer a precise solution for an individual adult for managing their condition, there is, in his words, a “group of solutions” that others have found helpful and can be used as personal experiments to see what works for you.

Duane strongly recommends the social support offered by a community of people with adult ADHD such as that offered by ADDA, the largest such organisation in the world. Not only does ADDA provide resources but it also facilitates exchange between members so that people can share their stories, the manifestations of ADHD in their lives and the solutions that have worked for them. This is similar to the healing power of storytelling embraced by the Creative Meetups hosted by the Health Story Collaborative (HSC). Duane suggests that organisations such as ADDA help adults to “take your ADHD and discover it for yourself” – facilitating the process of learning, experimentation, making adjustments and continuously applying new learning.

ADDA provides a free monograph which offers what it calls, 5 Pillars to Manage Your ADHD:

Learn self-acceptance
Take control of your life
Get enough sleep
Avoid over-committing
Engage a support system

Duane’s interview for the ADHD Toolkit, Why Entrepreneurship is a Great Match for ADHD, can be found here.

The metabolic approach to managing adult ADHD

Mel in another podcast interview with Dr. Chris Palmer, Harvard psychologist and author of Brain Energy, explored the metabolic approach to managing adult ADHD. In the podcast, The Truth About ADHD in Adults, she delved into metabolic health issues as the root cause of mental health disorders. This led her to a discussion with Chris about key elements impacting metabolic health such as nutrition, sleep , exercise and other lifestyle elements – all of which can negatively impact brain functioning when they are lacking or inadequate.

Chris argues that an elimination diet over two weeks could help to identify what foods you are sensitive to, e.g. dairy and gluten (which could lead to brain inflammation). He contends that metabolic health (and associated brain functioning) can be improved by increasing protein intake, lowering carbohydrates, eliminating alcohol and smoking (vaping) and undertaking daily exercise (even Cardio 2 level exercise – e.g., light jog, hiking, swimming).

Chris maintains that children with ADHD internalise the messages they receive at school and elsewhere, e.g., “you are a “problem child”, and this negatively impacts their self-esteem, both in childhood and adulthood. From his research, he contends that 50% of people with ADHD have “more than one diagnostic label”, e.g., Autism, Bipolar Disorder, and 10% will develop Schizophrenia.

Reflection

Gaining knowledge about ADHD helps us to understand better the challenges faced by adults with this condition. It can help us to develop greater tolerance of their hyperactivity, messiness, disorganisation, inability to concentrate, poor time management and incapacity to “remain on task”.

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Image by Chen from Pixabay

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

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