Category: Mental Health

Exercising Agency When Living with a Chronic Illness

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

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

How to develop agency as a writer with a chronic illness

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

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

Developing agency through research and education

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

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

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

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

Exercising agency in our recreational activity

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

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

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

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

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

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

Reflection

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

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

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

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Image by yoshitaka2 from Pixabay

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

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

How to Write with a Chronic Illness

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

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

Challenges for writers with chronic illness

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

  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.

Writing a Reflective Poem to Manage a Chronic Illness

I participate each month in a writer’s group for people experiencing chronic illness and/or disability.  We meet online on Zoom and undertake reflective writing following a stimulus piece (e.g. a poem, a song or short story) introduced by our facilitator.  We then share what we have written, being open about our challenges and the feelings we experience in dealing with them. 

An added benefit of our Creative Meetups is the willingness of participants to share their strategies for dealing with their difficulties.  While we each have quite unique health conditions, we are readily able to relate both to the feelings expressed by others and the strategies they share to overcome any negative self-talk.  Through the online Meetups, we can see other participants from around the world and progressively build relationships with members of the group.

The facilitator for our Creative Meetup group is now Jennifer Crystal, author of One Tick Stopped the Clock.  Jennifer is a story coach with The Health Story Collaborative that hosts our monthly Meetups.  So we have the distinct advantage of having a facilitator who is experienced in narrative therapy and teaching people how to write for healing.

Reflective poems: a strategy for managing chronic illness and associated feelings

One of the participants in our January Creative Meetup, mentioned that he writes a reflective poem as a means to “tell himself what to do” when he is overcome with difficult feelings such as anxiety or depression.  As an amazing piece of synchronicity, I had done exactly the same thing the night before the Meetup.

I was beginning to get frustrated with the constant flare-ups of dermatitis, set off by my multiple food sensitivities, when I began to ask myself, “Why do I keep eating things that I know will cause a flare-up of dermatitis?” Through the reflective poem, I was able to stand back, look at the consequences of my actions  and form the resolution to behave differently.  My recent reflective poem has enabled me to find light in the darkness.  The poem acts as a “bridge to action” in the face of inertia.

The Creative Meetups are a great stimulus to write and share our stories and the group provides ongoing support for behavioural change.  The insights gained from the stories of other participants are invaluable.  I have found, too, that I invariably write a poem after each Meetup – which is helping me to grow in self-awareness and to address unresolved issues in my life.  For example, I have written the following poems stimulated by activities of our monthly Meetups:

Healing through storytelling

Jennifer Crystal’s book, One Tick Stopped the Clock, epitomizes the healing power of storytelling encapsulated in the Creative Meetups.   She shares her feelings of being frustrated with the medical profession (it took 8 years to obtain a correct diagnosis of her chronic illness), how she had to develop a new identity and find ways to achieve self-care amidst her debilitating experience.  The strategies she employed to manage her challenges and difficult emotions included writing and pacing herself.  Jennifer’s proactivity, like that of participants in the Creative Meetups, act as inspiration for me to take action on my own chronic health condition.

Like Jennifer, I initially sought the advice of my General Practitioner only to find that the issue of allergy was outside his area of expertise.  However, to my frustration, he did not inform me that the clinic had a doctor who was trained in immunology.  After searching the profiles of the clinic doctors, I found a doctor who had a PhD in immunology and had worked in a number of hospitals as an immunologist. Through her referral, I had an appointment with a specialist who was a clinical immunologist and allergist.  Once again, my proactivity led me to unearth an erroneous assumption that I had made. 

The immunology specialist pointed out that I did not appear to have Mast Cell Activation Syndrome (MCAS).  He explained that there were two levels of Mast Cell Activation – mine related to Level 1 which was largely confined to the skin and was reflected in dermatitis.  He stated that MCAS, the syndrome level, was more episodic and systemic (including symptoms such as diarrhea, brain fog, breathing difficulties and digestive problems).

Reflection

I have been trying to manage my chronic condition of an overactive immune system but recently a tick bite set me back considerably as my dermatitis flared up resulting in a short time at the Emergency Centre of a hospital.  My feelings of frustration at not being able to eat a wide range of foods were generating a sense of helplessness. 

I have found that writing a reflective poem helped me to identify what was in my control and to face up to the actions I needed to take to redress my symptoms.  As I grow in mindfulness through reflective writing, I am gaining increased self-awareness, tapping into my creative energy and generating momentum for positive behavioural change.

The following reflective poem flowed from Creative Meetups and related storytelling and shared wisdom:

Managing Chronic Illness Mindfully

The chronic condition:
immune system overdrive,
comfort and pleasure turned to discomfort and pain.

Focusing on deprivation:
makes it more difficult,
harder to avoid the breakouts.

The brief taste sensation:
gluten delicacies enticing temptation,
causing skin damage.

Setting off micro-implosions:
lasting rash, hives and itch,
discomfort magnified by frequency.

The body keeps the score:
registering every aberration,
exacting its toll.

The way forward:
openness to “what is”,
bringing light to depressing darkness.

Paying attention to the body:
listening to the body’s wisdom,
breaking free of emotional blackmail.

Buying time to heal:
avoiding alcohol and sleep deprivation,
eliminating causes of flare-ups.

Reducing the need for cortisone ointment:
protecting the body’s skin barrier,
restoring immune equilibrium.

Mindful awareness growing inside:
opening to nature’s beauty,
savouring life-giving breath.

Discerning the locus of control:
identifying what I can change,
acting on this insight.

It’s time to rebuild:
exercising and osteopathy,
walking and Tai Chi.

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Image by Melanie 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.

Beyond Happiness: Strategies to Find Contentment

Gregory P. Smith wrote a book explaining the practical steps and strategies that he employed to turn his life around from being friendless, homeless, unemployed and broke to living a life of fulfillment and contentment.  His book, Better than Happiness: The True Antidote to Discontent, is a heartfelt exploration of his transformation where he openly discusses his anger, depression, and violence (to himself and others). 

Gregory had previously spent 10 years alone in the forest to escape from a society that he found to be superficial, manipulative and harmful.  The story of his survival in harsh forest conditions is captured in his book, Out of the Forest, where he explores his survival strategies and self-exploration.  His escape to the forest was, in part, a reaction to his traumatic upbringing where he was physically beaten by his father, placed in an orphanage, suffered “negative labelling” by fellow school students, and treated with contempt in youth detention centres.  He was unable to sustain employment because of his turbulent lifestyle, drinking to excess and doping on drugs.

Gregory has transformed incredibly completing a PhD, becoming an international speaker and advocate for the homeless and disadvantaged and achieving the Order of Australia award  for his community contributions.  His story incorporating the Order of Australia Medal award was captured in a 2023 episode of ABC’s Australian Story. Gregory strongly advocates that we do not ignore homeless people but give them a smile of acknowledgement (even if it is risky), as it can change their life.

The process of transformation

Gregory gave up alcohol and drugs and found a way to “become human” again.  His process involved much soul-searching and vigilance to avoid “sliding back” and indulging in ‘self-destructive behaviours”.  Gregory’s story of transformation is captured in the earlier Australian Story filmed in 2018.  He also shared his story in a 2021 TEDx Talk, From Forest Hermit to Professor of Sociology (transcript available through this link).

In discussing his journey in various media and in his books, Gregory highlighted a number of key elements/strategies that enabled him to move beyond happiness to a life of contentment with his very significant social and academic roles and a farmed-based life with his family.  These strategies included the following:

  • Accepting that he had created his own diabolical situation: instead of blaming others for his unhappy life, lack of friendships and homelessness, he began to acknowledge that his adverse situation was the result of choices that had made.  Instead seeing himself as a “victim” powerless to change, he recognised that he could turn his life around if only he had the resolve and willingness to do whatever was needed to improve his life and achieve contentment (a positive state beyond happiness).  Gregory focused on “acceptance” of what is – the fact that his “deepest wounds were self-inflicted”  and that his internal battles had been “destructive.”   He needed to develop the serenity to accept what he could not change, build the courage to change the things that were within his control, acquire the wisdom to discern the difference and understand his “locus of control”.
  • Forming an intention: Gregory resolved at the outset of his changed approach to “be a better man”.  This unshakeable resolve led to many changes in the way he viewed the world and people in it.  He had to challenge his attitudes and reframe how he thought about himself.  Intention forming helped him reshape his life.
  • Giving up alcohol and drugs: this was a foundational decision in line with his intention.  He knew from his experience of alcoholism and addiction that he could not pursue his resolve without giving up the power that alcohol and drugs had over him.  He realised, too, that his addictions were an ineffective way to deal with the pain of his traumatic childhood and adolescence.  Gregory had to ward off the commercial and social pressures that tried to force him to conform to others’ drinking and drug taking habits. Once he became sober and drug-free, he found that he could begin to think clearly, make sound choices and plan his next steps.  However, the journey into sobriety was a difficult one, testing him continuously.
  • Taking one day at a time: the complexity of the personal changes Gregory had to make were sometimes overwhelming.  However, his resolve “to take it one day at a time” enabled him to deal with bite-size chunks in terms of attitude and behavioural change.  His philosophy “to begin small” helped him to achieve small personal changes that became reinforcing in terms of the direction he was trying to head in – they also served to build his sense of  self-efficacy.
  • Volunteering with the RSPCA: Gregory had been a forest recluse for 10 years and was consumed by anger and hate as a result of his physical and psychological abuse in early childhood and debilitating detention experienced in adolescence.  He did not trust people and found it impossible to talk to them.  He decided to take the small step of volunteering with the RSPCA looking after dogs which enabled him to get in touch with the furry animals that he loved but also to begin to engage, slowly but surely, with other volunteers.  He also tried Alcohol Anonymous but found that regular participation was not for him – he did acknowledge that on the infrequent occasions he attended a meeting, he learned something from his fellow sufferers.
  • Gaining an education: Gregory believed that education would open doors for him.  Again, he decided to start small and enrolled in a Certificate 1 in Information Technology which when he passed gave him the belief in his ability to study and learn and do well in education.  Being “pumped and motivated”, he then enrolled in a bridging course at Southport TAFE which enabled him to eventually enrol in a university course.  He decided to undertake a course in sociology at the Coffs Harbour campus of Southern Cross University.  This led to an invitation to take on an Honours Degree.  His successful achievement of First Class Honours resulted in the offer of a Australian Postgraduate Award Scholarship to do his PhD.
  • Jettisoning labels: At every stage of his life, Geoffrey had to deal with negative labels. In his book on contentment, he explains the process and difficulty he experienced in “peeling labels”.  He realised that negative labels repeated often become a part of your self-perception (almost by osmosis).  He had been called “stupid’ throughout his life and was labelled a “sociopath” by a psychologist.  He did engage in anti-social behaviour and was violent at stages of his life, but deep down he had an intense desire to do the right thing and be morally upright.  Gregory’s ongoing academic achievements served as evidence that the negative labels he had been branded with were, in fact, false and were often promoted by people who were envious of his free thinking and outstanding transformation.  There were always naysayers who tried to deter him or belittle his goal to “be a better man”.
  • Changing attitudes: Gregory had to change his attitudes and particularly the way he viewed other people.  Instead of making them conform to his expectations (sometimes violently), he began to acknowledge peoples’ idiosyncrasies and accept that people are different and that is okay.  He focused on himself instead and tried to be the best he could be.  However, he acknowledged that “changing an attitude requires constant effort and vigilance”.
  • Being in the present moment: one of the things Gregory learned as a recluse in the rainforest was the power of the “present moment”.  Despite the hardship and deprivation he experienced in this reclusive existence, he was able to focus in on the present moment and appreciate the beauty that surrounded him in the plants, birds, trees and mountains.  He experienced the Power of Now that was a key learning of Eckhart Tolle during his period of homelessness.  Gregory was able to use the power of the present moment to manage the challenges that beset him in his transformation journey.
  • Managing his anger and resentment: after an angry outburst or physical altercation, Gregory would critically analyse what happened – what were the triggers?; what were his thoughts?; what words and actions did he employ?; what was behind his resentment? He came to realise what Viktor Frankl discovered in the concentration camp that there was a “gap” between a stimulus (such as a trigger) and a response and that real freedom lies in that gap and the power to choose how to react.
  • Framing his life as a “three-day-week”: Gregory had to resist the natural tendency to dwell on the past (which leads to depression) or to obsess about the future (which leads to anxiety).  He adopted the concept of the three-day-week as a way to frame his life – “yesterday, today, tomorrow”.  In this way, he could reflect on the day that had passed and take learnings from it, plan his activities for the following day and spend as much time as possible in the present moment.

Reflection

Greg Hassall in writing about how Gregory “survived homelessness, addiction, and abuse” suggested that Gregory’s greatest contribution is to provide a living example of the ability to change and to challenge those who believe that they cannot change because “we are captive to our own histories”.

Gregory argues that “changing who you are is a great adventure” – you need to identify what you will take with you in terms of attitudes and what you have to leave behind.  He showed that intention, being in the present moment, critical reflection and education go a long way to facilitating the necessary changes.

As we grow mindfulness through reflection and present moment awareness, we can develop self-awareness and insight, gain the courage and creativity to change and achieve contentment with our life.  Gregory reminds us that “contentment takes thought, mindfulness, planning, self-reflection, patience and vigilance”.

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Image by Patty Jansen 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.

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:

  1. Write about a time when you felt brushed off and what you wished that person could have seen on the inside, or
  2. 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.

A Journey Into Sobriety

Seana Smith in her memoir, Going Under, graphically describes her journey into sobriety – a state achieved for four years at the time of publishing her book.  Her memoir tracks her early childhood, addiction to alcohol and multiple attempts to escape both physically and mentally.  For each step forward, there was always a backward step until she found the solution to her addiction.  Her insightful, inspiring and humorous account traces the ups and downs of a life burdened by alcohol addiction.

Early childhood

Seana had adverse childhood experiences as a result of her father being a violent alcoholic and the inability of her mother to cope with his addiction and the physical and mental abuse against her. The verbal abuse by her father extended to Seana and her siblings, especially to Callum who had a serious mental health issue.  Seana’s home environment lacked consistency and warmth and was constantly unpredictable, despite some happy childhood moments with her parents individually or together.

Year of sobriety

Seana was able to achieve a year of sobriety when her twins were seven years old. The catalyst was a period of heavy drinking that resulted in her trying to pick a fight with her husband, Paul.  She was mean to him but fortunately he did not react to her” sarcasm and barbs”.  The twins had started school and Seana had a strong sense that her drinking was undermining “her urge to feel healthy and bright and well”.  She joined AA and took up ocean swimming which gave her challenge , excitement and a modicum of fear.

Despite this outstanding sobriety effort, Seana dropped back into her old ways, moving from drinking once a week to drinking a bottle a day.  Alcohol provided an escape from the mind-numbing routine of motherhood and the associated domesticity.  This led her to her endless cycle of “thinking and thinking and thinking about drinking”.  She described herself as “white knuckling” as she fought to regain control and overcome the very real physical and mental urge to drink…and drink to excess. 

The ever-present opportunity for free drinks from social events added to her pain and temptation, and ultimately resulted in her submission to the impulse to lose control over her drinking habit.  While Seana did not consider herself to be an alcoholic, she acknowledged that she engaged in “gray area” drinking, leading to morning hangovers and severe headaches impacting her ability to function fully.  She often alternated between moderate drinking and risky drinking.

Trauma and addiction

Gabor Maté contends that addictions, in multiple cases, originate from the pain of adverse childhood events.  The addiction, in whatever form it takes, is often an ineffective attempt to remove the trauma-induced pain.  The experience of trauma evokes negative self-stories and Seana’s book is replete with continuous self-deprecation.  Seana was in the grip of the “need to please” and believed that if she did not drink with others in social settings, she would not be “accepted”.  She also acknowledged that in her twenties, she was addicted to sex – another form of failed attempt to escape from trauma pain.

As part of her journey to sobriety, Seana discovered that her father’s “drinking story” continued through her. It impacted her need to “keep moving and moving”. She sought help from a therapist to assist her in “letting go of old trauma”.  The therapist employed EMDR therapy to great effect.  Seana was able to progressively move beyond the past, focus on the present, express gratitude for the “positive gifts my family and upbringing have given me” and to remember “all the good parts of Dad and Mum” and the adventures they took her and her siblings on.

The journey to sobriety

There are many perspectives on, and paths for, recovering from trauma and its muti-dimensional impacts.  The road to sobriety is complicated by trauma-induced beliefs and behaviour.  Seana like many others who have achieved sobriety found that it was a very long journey with many setbacks to recovery.  She also recognised that recovering from alcohol addiction required multiple pathways which served to positively reinforce each other.

She took up pool swimming that, along with the social encounters and new friends, provided her with release from the physical tension of trying to overcome her alcohol addiction. She also bought a dog, “a wee black poodle called Maisie” – which reduced her urges to escape and travel.

A key to her recovery was listening to sobriety podcasts constantly.  From Janey Lee Grace’s podcast, Alcohol Free Life, Seana discovered a solution, “keep the ritual – change the ingredients”, that she was able to implement by substituting “alcohol-free wines, cocktails spirits and mixers” for alcoholic drinks whenever she had a ritual of drinking, e.g. at 5pm.  She listened to multiple sobriety podcasts including Annie Grace’s podcast, This Naked Mind.   Seana also devoured Annie’s book, This Naked Mind: Find Freedom, Discover Happiness and Change Your Life.

A key factor for Seana in her journey to sobriety and freedom was the use of the affirmation, “My life will be better if I never drink again”.  This mindset shift refocused her belief and energy because she had always valued health, fitness and happiness but had pursued these goals in the wrong areas such as social drinking.

Reflection

Going Under is a courageous memoir recording a history of childhood trauma and the constant physical and mental battle to overcome alcohol addiction.  It makes you realise what is happening “on the inside” when someone is struggling with such addiction. Seana approaches her story with incredible insight and resilience.  Her humour adds character to her insightful tale.

As I read her book, I found that some parts triggered the memory of my father who was an aggressive alcoholic, physically abusing my mother and creating fear for myself and my siblings.  Seana’s book helped me to appreciate his internal struggle and the inability of my mother to cope with his alcoholism, sometimes aggravating the situation by berating him when he was drunk.  Seana recounts how her own mother learnt a little too late how to relate to an alcoholic partner.

There are multiple social support groups such as The Sober Club  developed by Janey Lee Grace which Seana refers to.  I have found that the Creative Meetup group hosted by the Health Story Collaborative is a strong support for me while I experience chronic illness and deal with my adverse early childhood experiences as a result of my alcoholic father.

Following one such Creative Meetup on Zoom, I reflected on my father’s war experience and resultant PTSD.  It helped me to better understand what he was going through and his daily challenge of just coping with life and family.  I wrote a blog post and a reflective poem titled, Paternal Forgiveness, to express my thoughts and feelings at the time.

I found that meditation and prayer helped me immensely to deal with my adverse childhood experiences and gave me the strength to overcome the tendency to addiction.  As we grow in mindfulness, we can unearth our negative self-stories, express gratitude for the positive aspects of our life and progressively build courage and resilience.

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Image by Alicia from Pixabay

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

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

The Trauma-Disease Connection – Lessons Learned

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

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

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

The early experience of Aimie

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

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

Trauma’s impact

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

Reflection

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

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

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

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Image by Daniel R from Pixabay

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

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

Expressing Gratitude Daily

Kim Armstrong provides a meditation on the theme of Cultivating Gratitude Daily.  In the 12-Minute Meditation podcast on 21 March 2024, she takes us through a process of reviewing our day (or the previous day) at micro-points to reflect on instances, interactions or events that brought us joy, happiness or contentment.  She encourages us to reflect on these moments to express appreciation for them.  They don’t have to be big happenings, but by reflecting on the small positive moments in our life, we can cultivate gratitude on a daily basis.

Kim is co-founder and facilitator of Space Between, a not-for-profit organisation dedicated to bringing the benefits of mindfulness to teachers and school-aged youth.  She has a Master’s Degree in Child and Adolescent Psychology and is a certified meditation and yoga teacher.  Fun-loving Kim is a strong advocate and practitioner of deep listening and draws inspiration from Thich Nhat Hanh’s quote, “Live the actual moment. Only this actual moment is life”.   

Space Between draws its name from Viktor Frankl’s book, Man’s Search for Meaning, and his observation that:

Between stimulus and response, there is a space.  In that space lives our freedom and our power to choose our response.  In our response lies our greatest happiness.

Guided meditation process

In her guided meditation, Kim helps us to explore the minutia of daily life and to learn to savour each moment that has enriched our lives in small and significant ways.  Her process begins with encouraging us to take two deep breaths, inhaling through our nose and exhaling through our mouth, as a way to become grounded for the meditation practice.  This initial breathing process could be accentuated by vagal toning.  She then leads us to reflect on different stages in our day.  The reflections below are my own recollections of moments I appreciated as I progressed through her “Cultivating Gratitude Daily” practice:

  • Waking up –  the warm morning hug from my partner; the sound of birds greeting the morning light (especially the Kookaburras and their raucous “laughter”); the red and yellow glow of the sunrise spreading across the horizon and being reflected in the waters of Moreton Bay; the view of Green Island and its sandy beach from my lounge room and deck; the sand dunes of Moreton island providing a very white backdrop; the early morning silence punctuated by the calls of birds and the sea breeze.
  • Moving from the bedroom – appreciating having the water and toothpaste to brush my teeth; the opportunity to shower and freshen up for the day in a bathroom (instead of in a lake or river); observing the sunlight spreading throughout the rooms of the house I share with my partner and one of my sons; having a house to live in that is spacious and open to views of the Bay.
  • Beginning the day – being able to make a cup of coffee on our Expresso machine; having access to Almond Milk (to avoid dairy milk intolerance);  savouring the foam and taste of the cappuccino I made; providing a coffee for my partner; having distilled water and vitamins to energise my day; enjoying gluten-free toast and avocado for breakfast; watching the birds feeding off the nectar from our native Bottlebrush trees; enjoying the colour and shape of the Bottlebrushes.
  • Transition to work, play, or  exercise – having a focus and a purposeful task such as my blog and book; being able to write well; having a talent for integrating ideas, concepts and practices from multiple sources; having focus and clarity (not encumbered by “brain fog”); being able to form an intention and pursue it; being able to create poems to reflect my thoughts and emotions.
  • Transition to home life – being able to walk on the Esplanade beside the Moreton Bay;  seeing pelicans gliding gracefully across the water at the creek’s edge and resting contentedly on rocks beside the seagulls as they survey the surrounding Bay waters glistening with sunlight; having access to shops to buy a wide assortment of foods; having food to prepare for dinner; preparing the dinner meal for my partner and son;  the pleasure of eating and sharing; the taste of food and drink (peppermint herb tea).
  • After dinner – sharing a favourite TV show with my partner; being able to watch the Olympics and European soccer (having the resources to fund streaming services such as Stan and Kayo).
  • Sleeping – being able to sleep (not suffering from insomnia); having a comfortable and warm  bed to sleep in (not sleeping in the street on our Winter nights); the stillness of the night.

Kim points out that the “cultivating gratitude practice” has many benefits.  She maintains that it offsets the negative bias of our brains and the tendency to focus on what is unpleasant or dissatisfying.  Kim argues that gratitude builds resilience, displaces envy and resentment and builds a positive mindset. In her mindfulness training with teachers and school-aged youth, she aims to help them to achieve “integration and wholeness”.  Cultivating gratitude helps us to get in touch with ourselves.

Kim and her colleagues at Space Between employ trauma-informed mindfulness training to help members of the school community to use the space between stimulus and response to make better choices for the benefit of themselves and their community.   Research supports the organisation’s observation that undertaking mindfulness practices intentionally provides “systemic support for the mental health and well-being of students, teachers and families”.

Reflection

The “Cultivating Gratitude Daily” practice helps us to grow in mindfulness and experience the benefits of heightened creativity, greater calm and clarity, and improved focus and productivity.   It assists us to see more clearly what we have in life – the things that bring us happiness and joy and builds positivity that contributes to increased resilience.

It also helps me to appreciate the opportunity to pursue a purpose, the creation of this blog, that is helpful for other people as I contribute to awareness of what resources are available to develop mindfulness and the multiple benefits that can accrue from pursuing mindfulness intentionally.

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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.

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:

  1. 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)
  2. Difficulty controlling emotions – can be impulsive, easily frustrated and reactive
  3. 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)
  4. Time management problems reflected in lateness, being the last person to arrive
  5. Capacity to function at a high level – workaholism (including “all-nighters”) and entrepreneurial success
  6. 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:

  1. Learn self-acceptance
  2. Take control of your life
  3. Get enough sleep
  4. Avoid over-committing
  5. 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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