Month: March 2025

The Space Between – Overcoming Overwhelm

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

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

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

Finding agency in the space between

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

Fighting misinformation to overcome overwhelm

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

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

Strategies for managing overwhelm during life transitions

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

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

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

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

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

A meditation to overcome overwhelm

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

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

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

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

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

Reflection

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

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

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

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Image by Plutozoom from Pixabay

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

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.

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.