recovery – Grow Mindfulness

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.

Deprivation Can Engender Gratitude

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

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

Hope and social support

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

Alexa Leary’s story – from tragedy to triumph

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

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

Specialised Support through ADDA

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

Reflection

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

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

Losing Sight

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

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

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

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

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

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

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

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

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Image by Shan from Pixabay

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

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

The Healing Power of Social Support

Social support can take the form of having friends, family or other people who can be a source of support in difficult times, such as chronic illness, death of a loved one or ongoing disability. They can provide emotional, companionship or resource support and enhance our self-image while offering different perspectives on what we are encountering.

Social support can be provided through a formal social network where people with common interests come together to achieve specific outcomes such as fitness, charitable work or a hobby (as with the Australian Men’s Shed). Alternatively, they can be informal where a number of people come together on a regular basis to share a coffee and have a chat.

The benefits of social support

Julia Baird, author of Bright Shining: How Grace Changes Everything, highlights the mental health benefits of social support and points to the research that shows the “poor mental health” that results from isolation and loneliness. She refers to a homeless support group organised by St. Vincent de Paul Society that she joined and noted that there was “no pretence”, people “just being who they are”. The healing power of this transparency and normality was evident in the homeless participants developing a positive self-image and contributing from their perspective and reality.

Social support is one of the three components for sustainable recovery from trauma, along with appreciating the complex nature of trauma and its impacts and adopting a holistic approach. Research and clinical practice have demonstrated that social support builds resilience in trauma sufferers – they realise they are not alone, are encouraged to pursue their healing process, are reinforced in their healing efforts and learn vicariously from others who are experiencing difficult emotions and challenging situations. The resultant sense of connectedness contributes to positive mental health.

The GROW organisation over many years has demonstrated that mutual social support has contributed to recovery from many forms of mental illness for hundreds of people (as documented in testimonial stories by participants). The peer-to-peer support process facilitated by a nominated leader within the “lived experience” group, promotes personal development and ongoing recovery – a process that may take a number of years.

Reflection

Social support helps participants to develop a sense of being cared for as well as feeling that they can seek assistance from others in understanding and managing their challenging situation. People gain a strong sense of belonging and connectedness through sharing their personal challenges, their success strategies and their progress towards healing. They grow in mindfulness as they share their stories and write about their insights, gaining increased self-awareness and heightened self-esteem.

Creative Meetups, provided by the Health Story Collaborative, is a powerful social support system in that it combines the healing power of social support with the healing power of storytelling. Participants feel fully supported by others engaged in compassionate listening or sharing their stories of challenging situations resulting from chronic illness, disability or their carer role. The following poem expresses the sense of social support that can be gained through the Creative Meetups:

Social Support

When we share our stories of personal challenges, we realise that we are not alone.
We draw strength from others experiencing and managing more difficult circumstances.
We sense that we belong and feel connected to something outside of ourselves and our pain.
We can be ourselves, free of pretence, unencumbered by the need to be “better than”.
We build trust, savour our relationships and look forward to the next encounter.
There is something magical and disarming about the process that leads to changing perspectives and healing.

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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 and the resources to support the blog.

The Demeaning Power of Coercive Control

During the recent 2023 Mental Health Super Summit Dr. Richard Hill explained the concept of “coercive control”, how it manifests and its devastating effects on children and adults. This is a form of insidious, creeping control over another by a perpetrator (usually a parent or partner) that Richard describes as “a slow whittle”. He drew on the definition of Dr. Emma Katz, a world authority in the area, to explain that coercive control involves the progressive “controlling of somebody else’s whole life”. It takes away their normal autonomy and sense of freedom. The control that is exercised is “wide-ranging and persistent”. If the controlled person resists or refuses to conform they are punished. The net result is that the controlled person lives a constrained way of life to avoid punishment.

In her book, Coercive Control in Children’s and Mother’s Lives, Emma explains that children and adult survivors even after they are able to break free from the perpetrator must engage in a “sustained battle for safety and recovery”. Through her research with many victims-survivors, she has become convinced that support and “professional Interventions” are needed to facilitate healing and recovery.

Richard explained that the perpetrator of coercive control keeps the controlled person “off balance”, continuously confuses them and progressively isolates them from others (in part, so that they can’t tell others what is happening to them). He argues that the controlled person can begin to question their own sanity (because of “gaslighting”) and loses both self-esteem and self-determination. Even when they are able to flee, they may fear for their safety because of stalking by the perpetrator who may continue to engage in “post-separation abuse”.

Even seeking assistance from the law is fraught with risk and difficulty for victims-survivors of perpetrators of coercive control. In her book, Women, Intimate Partner Violence and the Law, Heather Douglas (drawing on case studies) explains that perpetrators often use the law against their victims, and that victims-survivors require very high levels of “endurance, tenacity and patience” to obtain help and protection through the law. She highlights “the failure of the legal system to provide safety for women and children” on many occasions.

Jess Hill, Richard’s daughter, in her well-researched book, See What You Made Me Do: Power, Control and Domestic Violence, supports the view that “abuse is often reinforced by the justice system they trust to protect them” as victims-of domestic violence. She suggests that instead of questioning why a woman didn’t leave her abusive partner, we should be asking, “Why did he do it?”. She offers ways forward to reduce the abuse and fear resulting from domestic violence that is so prevalent in Australian homes.

Jelena Dokic’s experience – a classic example of coercive control by a parent

In a previous post, I spoke of the physical abuse suffered by Jelena Dokic at the hands of her father, Damir Dokic. Jelena, in her second memoir, Fearless: Finding the Power to Survive, also details what amounts to coercive control by her father – “wide-ranging and persistent control”. Her father used physical punishment to control her behaviour (e.g. punishing her for not winning). He restricted her access to people and attempted to isolate her. He continuously called her demeaning names such as “cow” and “whore” and took control of her money, demanding she sign over her winnings and savings. Her father also took all her trophies and sold them. On one occasion, he publicly smashed a crystal runners-up trophy because Jelena did not win the tennis competition.

Jelena escaped from her family in 2002 (aged 19 years). Despite this break away, she suffered post-separation abuse of her freedom. She was effectively stalked by her father and mother. They would turn up unannounced at WTA events she was competing in and try to coax her to “return home”. WTA security protected Jelena and refused entry to her father. However, during the US Open in 2003, her mother turned up at her hotel and insisted that she sign over the family home in Florida to her father.

In the previous post, I also described how Jelena was coached and supported by Australian tennis great Lesley Bowrey in her younger years, achieving outstanding success as a junior on the global stage. Lesley believed in Jelena and what she could achieve and showed her respect and kindness – a stark contrast to the behaviour of her father. However, eventually, her father insisted that she sack Lesley as her coach which shattered Jelena’s “happy world” and left her devastated.

The continuous belittling, dismissing her achievements and pervasive control took its toll on Jelena’s mental health and she suffered from a loss of self-esteem and a feeling of “not being good enough”. She felt trapped by her father despite being physically separated from him. She experienced “thoughts of suicide” because she could see no way out of her traumatic situation (her “entrapment”).

Coercive Control of Jelena’s mother

Jelena and her mother, Ljiljana Dokic, were estranged because her daughter felt that her mother had failed to help and protect her against her father’s physical abuse and coercive control and the trauma she experienced. However, in her Fearless memoir, Jelena explained that they had restored their relationship after she found it in herself to forgive her mother for her lack of protection. She came to understand that her mother too suffered at the hands of her father. She was also beaten into submission and suffered coercive control.

Jelena’s father made all the key decisions impacting her mother. He determined where they lived, controlled all the money (mainly Jelena’s winnings) and forced her to undertake unpleasant tasks against her will. Jelena’s mother was forced to work to provide herself with some independent income.

Reflection

In her memoir, Jelena acknowledged that she had not forgiven her father for his physical abuse and coercive control. She had come to realise that her mother too was controlled by him and Jelena was able to find a level of forgiveness towards her mother following this realisation.

In an earlier post, I provided a reflection process for dealing with resentment and anger. It facilitates looking at what was happening for the other person in a conflict/abuse situation. Among other things, it asks you to think about what was happening for the other person in terms of self-esteem and identity. It also requires you to think about the pressures and stresses experienced by the other person, including their life experiences and familial influences. As Bruce Perry and Oprah Winfrey suggest, an important question is, “What Happened to You?”.

By adopting the other person’s perspective, you are better able to be empathetic and find forgiveness. Jelena was able to do this in relation to her mother, but not her father. Understanding and forgiveness may come with an appreciation of the influences that shaped her father’s life, including poverty and living in war-torn Croatia as a parent and partner, becoming a refugee in Australia and being beaten by his parents as a child. Jelena’s hurt and pain at the hands (and mind) of her father are deep and will take a lifetime to heal.

As we grow in mindfulness, through reflection on our own life and significant formative events, we can appreciate the positive people and events in our life that helped to shape who we are and what we have achieved. Jelena’s story, recorded in her memoirs, is a great source of inspiration for overcoming life’s challenges and appreciating what we do have.

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Image by Myléne 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 and the resources to support the blog.

Healing Through Creative Storytelling

I have previously written about the Health Story Collaborative created by Dr. Annie Brewster M.D. The Collaborative provides an online platform for individuals to share their story (through any medium) about their health challenges and their road to recovery. The stories provide healing for the storyteller and ongoing inspiration for others to overcome the challenge of ill-health in whatever form it takes. Annie Brewster is the author of The Healing Power of Storytelling: Using Personal Narrative to Navigate Illness, Trauma and Loss.

Creative Meetups

One of the programs offered by the Health Story Collaborative is Creative Meetups that are designed to cultivate “writing for expression and connection”. They are based on the firm belief that artistic expression of a person’s story can help them “find hope and healing”. These free workshops are offered every second Wednesday via the Zoom platform – they only require prior registration through the website.

The Creative Meetups are currently facilitated by Annie Robinson, who has completed a Masters in Narrative Medicine and is a qualified meditation, mindfulness and yoga teacher. In her private practice, Annie helps health professionals, including nurses and doctors, by training them in wellbeing, reflection and resilience. She also assists individuals in various life transitions and is co-curator of the podcast for health professionals, Thriving in Scrubs.

My experience of a Creative Meetup

I recently participated in my first Creative Meetup – initially with some uncertainty, not knowing what would be involved and how vulnerable I would feel. The Meetup facilitated by Annie had about 12 participants, both male and female. The process usually involves Annie providing some form of stimulus for reflection followed by a period for individual creative writing that can take any form a participant desires, e.g., a poem, picture, narrative or dot points.

Annie explained at the outset that she was departing from her usual practice of having two participants read out a piece of writing, e.g. a poem, that can act as a stimulus to reflection. On this occasion, she shared an abstract painting that featured a number of colours with a pattern that suggested “reflection” to me.

Our Meetup process involved an initial two minute writing task where we reflected on what the painting meant for us as individuals, there being “no right answer”. This was followed by a brief sharing by some people who wished to share with the larger group. We were then assigned the task of taking a sentence from our earlier reflection and expanding on this over a period of 20 minutes of individual creative writing (with no restrictions on form or length).

When we had completed our creative writing, Annie placed us into Zoom “rooms” of three or four people to share at another level. Participants were encouraged to share only what they felt comfortable sharing with no pressure for full disclosure. The small group environment enabled rapid rapport building and a degree of openness that was disarmingly honest (destroying any erroneous first impressions that may have been formed).

As one participant commented in the larger group, there was a common bond amongst participants in that we were all dealing with a health challenge (however varied in nature and complexity) and were seeking healing through writing and sharing. Reg Revans, the Father of Action Learning, would describe us as “Comrades in Adversity” (or as others put it, “Comrades in Opportunity”).

The environment created through the Creative Writeup process was one of trust that facilitated openness and vulnerability by participants. There was a shared sense of journeying towards healing with the aid of the understanding, empathy and mutual support offered by fellow participants. Annie’s low-key facilitation style and active listening modelled appropriate behaviour for participants.

I was blown away in the small group by the creative writing that was shared. In one case, this involved a poem that expressed the meaning for the participant of each of the colours in the painting – an insightful and revealing piece of writing that we asked the storyteller to read a second time because it was so rich. Another involved an allegorical story that was emotive and self-disclosing and left us all feeling loving kindness towards the person who shared so vulnerably.

One of the features of the small group was the way that one person’s shared reflection stimulated reflection by another person and achieved a deeper level of self-disclosure. Participants could relate to some aspect of a shared situation, response or recovery approach. We were each able to learn from the storytelling.

Reflection

During the small group sharing, I was able to share with others how expressing gratitude for what I am able to have and do was a recovery mechanism for me following my diagnosis of multi-level spinal degeneration. It also empowered me to seek alternative medical assistance in the form of an exercise physiologist who helped me return to tennis when my doctors told me that I would never play again.

The painting that Annie shared reminded me of the art of reflection – having spent most of my working life in studying, teaching and practicing action learning. Reflection underpinned the way I played tennis, conducted workshops, managed people and interacted with others.

More recently, through reflection, I came to understand that one of my personal barriers to active listening was my need to come from an “I know” perspective rather than what Frank Ostaseski recommends as a “don’t know mind”. The “don’t know” approach is foundational to action learning, so my listening behaviour was not congruent with what I espoused about action learning. Reg Revans reminds us that, ”If you think you fully understand something, you are not only going to get yourself in trouble but others as well.” Reg encourages us to “ask fresh questions” and to develop “questioning insight”. He frequently quoted Isaac Newton’s comment about studying some interesting shells and pebbles in his lifetime “whilst the great ocean of truth lay all undiscovered before me”.

At the time, I attributed this personal barrier to active listening to my many years as an academic. I realised, too, that the “I know” perspective accounts in part why I had so much resistance when trying to introduce action learning into my university. It also explains why in the first year of an action learning program that I was facilitating in another university, the hierarchy insisted on removing “become a learning organisation” from the vision statement for the program (they re-inserted it after their experience of the first year of the program and its outcomes).

As I grow in mindfulness through reflection and activities such as the Creative Meetups, I am better able to develop resilience to deal with life’s challenges, gain increased self-awareness and cultivate deep listening to enrich my relationships.

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Image by Peter H 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 and the resources to support the blog.

Mindfulness: A Pathway to Long Covid Recovery

Gez Medinger, creator of more than 90 video interview podcasts on Long Covid, strongly recommends visiting your medical practitioner if you have symptoms related to this emerging illness. He also suggests that any medication should be supplemented by whatever way you find useful to calm your autonomous nervous system. He argues that there is no recovery from Long Covid without calming the mind and body because the illness is a form of inflammation affecting multiple parts of our human makeup (as reflected in the more than 200 systems identified as being associated with Long Covid). The illness creates pain because of over-activation of nerves in multiple parts of the body (the body goes into a fight/flight response). Dr. Deepak Ravindran, pain management expert and Head of a Long Covid Clinic, encourages the use of gentle mind/body practices such as Tai Chi to aid the management of pain and overall recovery.

After interviewing yoga teacher Suzy Bolt in one of his podcast interviews, Gez strongly advocates her course, Rest, Repair, Recover Programme, as a pathway to recovery from Long Covid. Suzy’s Programme incorporates yoga, breath techniques, meditation and other mindfulness practices. She also provides a community of people who are currently experiencing Long Covid or have recovered from it and who readily provide supportive relationships by sharing their own experience of what works for them and offering encouragement and inspiration. The three different levels within the Programme cater for everyone, irrespective of their physical limitations or mobility issues.

Evidence of the effectiveness of the Rest, Relax, Recover Programme (incorporating mindfulness)

Of particular note, is Suzy’s interview with a course participant Joe Iddison and world famous cardiologist, Dr. Boon Lim. In the video interview, Joe talks about his recovery journey from Long Covid with the aid of Suzy’s Programme and Boon’s medical advice. Joe had experienced multiple Long Covid symptoms including PoTS, brain fog, fatigue and insomnia. Boon recommended Suzy’s Programme because of the many reports he had been receiving from his patients who had recovered from Long Covid with the aid of medication and the Programme. He indicated that he meditated a number of times each day in his busy cardiac practice.

Suzy herself had recovered from extreme symptoms of Long Covid and her capacity to launch and manage her Programmes with the aid of other professionals, bears witness to the power of her approach. She stressed the value of her Programme in helping people deal not only with the physical side of the condition but also the mental and emotional side. Long Covid can negatively impact your role, self-identity, work and home activities (including caring for children) – some people, for example, are so ill that they cannot get out of bed (and you can see them participating in Suzy’s Programme from their bed). People, too, experience fear and anxiety as a result of the uncertainty and lack of understanding of the illness (from doctors, family, bosses, colleagues and friends). Mindfulness has been shown to help people manage their anxiety.

While participating in the Programme in real time is desirable for the community connection, the Programme’s effectiveness can also be realised through accessing the resources provided after the activities have been completed live. Suzy offers an on-demand version of the Programme, at a reduced rate, for people who cannot attend live because of family or work commitments or time differences (the Programme is offered according to the UK time zone). Joe attests to the effectiveness of the on-demand Programme because that is the version he used for his recovery from extreme Long Covid symptoms. He indicated in the interview mentioned above that he undertook one activity per day drawing on the Programme’s resources (e.g., yoga, breathing techniques, meditation or listening to the group discussion).

Developing a positive mindset

A key element in the Suzy’s Rest, Relax, Recover Programme is the power to create hope in participants. This is generated through Suzy’s positivity, the community support and the video testimonials and education provided by participants and medical practitioners. A key element in recovery from Long Covid is a positive mindset because this determines whether or not you will make the necessary adjustments to your lifestyle to aid recovery. Debbie Geraghty, for example, shares her recovery story and emphasises the importance of being positive and tapping into something that you love such as dance, creativity, and/or connection.

Deepak Ravindran, Long Covid and pain management expert mentioned earlier, has written a book, The Pain-Free Mindset: 7 Steps to Taking Control and Overcoming Chronic Pain, which is available in Paperback or as an e-book. Deepak also mentioned in the interview with Suzy that he has obtained funding to support his patients to be able to do seated Tai Chi.

Reflection

The inability of many doctors to understand the nature and complexity of Long Covid has left their patients confused and uncertain. Gez Medinger commented during the Long Haul & CFS Summit that the specialization of medicine has contributed to this. He stated that many medical practitioners are “inadequately equipped” to take on Long Covid because it is a “multi-system, multi-factorial, multi-organ” condition. Too often, a medical practitioner will focus on a particular symptom that they know how to address but fail to identify the root cause of the overall debilitating condition. There are clearly exceptions to this, including Dr. Deepak Ravindran and Dr. Boon Lim.

It is important, however, to establish whether other factors (such as nutrient deficiency, undiagnosed cardiac illness or structural problems) are causing and/or contributing to our emerging symptoms. Leading neurologist, Dr. Shanna Patterson, in a video interview podcast for the Foundation for Peripheral Neuropathy, emphasised that scientists are reluctant to attribute peripheral neuropathy to Long Covid without supportive scientific evidence (because there are many possible causes of this condition).

However, individuals who are suffering from other identified Long Covid symptoms report experiencing peripheral neuropathy in the form of numbness, pain or tingling in their arms, legs or feet. Shanna encourages people to explore different forms of diagnosis with their doctor to determine the type of neuropathy involved and to identify appropriate treatment options. She indicated that blood tests, for example, can highlight whether diabetes, thyroid problems or vitamin deficiency is contributing to the neuropathy.

As I have experienced peripheral neuropathy and a mild form of post-exertion malaise, I have recently approached a medical practitioner who is very experienced and qualified both as a General Practitioner and an Occupational and Environmental Physician. I have undergone a series of tests for my current condition under his guidance. I have simultaneously registered for the on-demand version of Suzy’s Rest, Relax, Recover Programme (the timing of the live sessions does not suit people living in Brisbane, Australia).

I have a firm belief that as I grow in mindfulness – through breathwork, meditation, Tai Chi and other mindfulness practices – I will be able to calm my autonomous nervous system, develop confidence and hope and facilitate my body’s self-healing properties. I look forward to engaging with the training provided by Suzy and her professional colleagues and learning from the experience (and success) of others who have suffered from Long Covid. Suzy reinforces the view that breath is “the bridge between mind and body” and that we can slow both our mind and body by consciously slowing our breath. Suzy’s YouTube Channel, with free resources such as podcast interviews with leading experts and sample classes, is located here.

Alexia Chellun’s Healing Song is very apt at this point as it incorporates the mantra:

“My body, mind and spirit are healthy”.

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Image by Zhu Bing 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.

Trauma Resilience

David Treleaven presented on the topic, Resilience to Trauma, at the recent Embodiment Festival 2023. He made the point that while meditation and mindfulness practices can help some people recover from trauma, meditation may not work in individual cases. He argued that suggesting “more” meditation is not the answer – we have to recognise the complexity of trauma and how it plays out in different people’s lives. Individual’s hypervigilance as a result of trauma may impede their capacity to be still and reflect and they may find themselves continuously oscillating between a trauma response and temporary wellness – impeding their capacity to develop resilience.

David commented that trauma can create a level of rigidity in our response to stressors. He noted that in some cultures such as Australia, Ireland, and South Africa, humour plays an important role in helping people to develop resilience. Mark Walsh, Festival organiser and interviewer, commented that after undertaking trauma recovery work in Ukraine, he realised that humour is an integral part of the resilience of the Ukrainian people. It was noted, too, that the current President, Zelenskyy, was previously a comedian and actor.

When Mark asked David what advice he would give to young people in these present challenging times, David suggested that it is important to undertake a regular practice that builds personal resilience. He maintained that this is very much a personal choice but whatever practice you choose, to do so purposefully and “don’t be afraid to make a mistake”. This wide-ranging discussion increased my interest in the relationship between trauma and resilience. I decided to explore David’s podcast series, Trauma-Sensitive Mindfulness, where he interviews trauma experts to explore the intersection of mindfulness, meditation and traumatic stress.

Trauma and Resilience

I was immediately attracted to David’s podcast interview with Anjuli Sherin on the topic, Resilience, Mindfulness and Trauma Recovery. Anjuli is a Pakistani American who specialises in trauma recovery with families, especially members of immigrant families. She is a highly qualified and experienced therapist who offers individual therapy sessions, healing groups, guided meditations, training and her Joy Blog. Anjuli is the author of Joyous Resilience – A Path to Individual Healing and Collective Thriving in an Inequitable World. The interview is very rich in its discussion of resilience and Anjuli’s book, because she shares insights from her own life experience and the resilience journey of her therapy clients. David, himself an expert in trauma and trauma recovery, acknowledged that he learnt some new things as a result of the interview.

Anjuli begins with recounting her own trauma recovery journey, highlighting the trauma she experienced as an 18 year old, female immigrant to America. Not only did she feel totally disconnected from her new cultural environment, she was also carrying the scars of intergenerational trauma resulting from living with her family in the “systems of oppression” present in Pakistan as she was growing up. She found herself alone in America with no “compass”, family or community, while still in her early 20’s.

Anjuli experienced what Bruce Perry describes as a “sensitised stress response” which led to overreactivity and maladaptive behaviour. She describes her trauma as translating into “anger, fear and violence”. She found that she did not cope with the stressors in intimate relationships, partly because she could not access, and express, her feelings and needs. She was experiencing “emotional dysregulation” where she lacked control over her emotional responses. Her reactivity in her relationships led to more stress and feelings of shame. Anjuli describes this trauma experience as the ”cycle of trauma” – the “vulnerable self” experiences stressors that lead to reactivity which, in turn, increases a sense of vulnerability, fear and helplessness that, again, heightens reactivity and maladaptation. The trauma cycle results in negative self-evaluation, avoidance, and questioning “what’s wrong with me?” – creating a further “cycle of suffering”. An alternative mindset explores “what happened to you?” and seeks to understand trauma, its complexity and impacts.

The “circle of resilience”

Anjuli describes the trauma recovery journey experienced by herself and her clients as a journey towards, and into, the “circle of resilience”. This is a process, not a set state, that involves developing or accessing “four aspects of self” that enable the development of resilience and facilitate trauma recovery. These aspects of self replace self-criticism, self-neglect and denial of feelings. Anjuli maintains that people who have experienced trauma are often not able to use the “tools of resilience” (such as mindfulness, yoga, Tai Chi or exercise) in a sustainable way because of their “vulnerable self’ and being stuck in their reactivity and sense of helplessness.

Anjuli noted that in her early stages of arrival in America she ignored advice to seek a therapist to help her with her trauma recovery. It was only after the stressors she was experiencing increased (e.g. graduation and relationship stress) that she heeded advice to seek therapeutic assistance. She had been mired in her negative self-evaluation and her maladaptive behaviour up until that time.

The “four aspects of self” for the resilience journey

Through her own therapy and consulting with her clients, Anjuli identified what she calls the “four aspects of self” that enable anyone who has experienced trauma to undertake the resilience journey. She found that her own therapy “changed everything” and helped her to develop resilience by providing “foundational teaching” to shift from emotional dysregulation to emotional regulation, to move from stress and shame to self-care, and to develop “healthy control and agency over actions, emotions and relationships”. Her reactivity diminished and she was able to understand her own needs and ask for what she needed.

During therapy she developed the “four aspects of self” that enabled her to enter the path, and move along the journey, to healing and resilience, thus enabling her to utilise the tools of resilience, such as mindfulness and exercise, in a sustainable way. The four aspects described in depth by Anjuli in her book are:

Nurturing – self-talk that recognises feelings (naming her feelings) and “turns to those feelings with attunement and loving kindness”, leading to acceptance
Protection – establishing healthy boundaries and limits
Play and creativity – accessing the things that bring pleasure
Awe and Gratitude – through the experience of beauty and “interdependence with the larger world”.

Anjuli explained that these four aspects of self, enabled her to let go of her “vulnerable self” and to acknowledge that she is able to deal with challenging emotions such as grief and fear. She stated that these four states “are not built outside of relationship”. She reinforced the critical role of supportive relationships in the journey to recovery and resilience. Brooke Blurton in her memoir, Big Love: Reclaiming myself, my people, my country, highlighted the relationship orientation of her Aboriginal culture and its role in helping her through multiple sources of trauma to heal and develop resilience. She experienced intergenerational trauma, poverty, homelessness, sexual abuse and racism, yet throughout she was sustained by the “constant love” of her addicted mother and the love of her family (especially her Nan and siblings), the extended family of “Aunties” and “Uncles” and what she calls “the mob”. Anjuli reinforced supportive relationships as a “source of resilience” in that they provide protection, nurturing and a readiness to listen and positively affirm a person’s experience and emotions and offer reassurance that they “are not alone”.

Reflection

Supportive relationships appear consistently as a key element for trauma recovery and the development of resilience. When I reflect on my own experience of recovery from personal trauma, I am able to acknowledge the central role played by nurturing, protective relationships. Anjuli’s book promotes personal and collective healing and recovery, and offers supportive practices and insightful case studies that facilitate the development of resilience and encourage joyful thriving.

Resources that can help us achieve trauma resilience, and the ability to cope with life’s challenges, include the Healing Trauma Program offered by Sounds True which involves 13 key trauma recovery experts such as David Treleaven. Sounds True also offer a shorter course, Trauma and the Embodied Brain, facilitated by Bonnie Badenoch, PhD. Bonnie is the author of the book, The Heart of Trauma: Healing the Embodied Brain in the Context of Relationships.

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Image by Alex Hu 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.

Perspectives on Recovering from Trauma

Trauma is a complex area and the process of recovery is rarely linear. It often involves progress/regress over an extended period, sometimes a lifetime. Various experts have studied trauma and its impacts from multiple perspectives, drawing on research, clinical practice and reflection on their personal experience. They have adopted different approaches to facilitating recovery from trauma, recognising that the experience of a traumatic event and its subsequent impacts vary from individual to individual. Health Means bring many of these conceptual and practical perspectives together in their Biology of Trauma 2.0 Summit.

Recovering from trauma and its impacts

There can be differential impacts for people witnessing the same traumatising event, such as a mass shooting, sudden death of a close relative or a car accident. The depth of trauma response, according to Bruce Perry, is influenced by the timing, pattern and intensity of the initiating event as well as the degree of mitigating factors, especially “relational health” – the quality of connectedness and of supportive relationships. In his view, “connectedness can counterbalance adversity”. Improving relational health with a therapist as well as supportive others is a key element in recovering from trauma. Dr. Elena Villanueva provides a pathway to relational health by offering a group-based recovery process, incorporating facilitation by health experts and a personal care plan. Her holistic process is offered in the form of a Mind/Body/Energy Program. Bruce Perry is a co-author with Oprah Winfrey of the book, What Happened to You: Conversations on Trauma, Resilience and Healing.

Bessel van der Kolk places considerable emphasis on the “visceral impact” of trauma – the generation of deep inner feelings. He argues that recovery processes should focus on the “emotional brain”, rather than the “rational brain’. He maintains that the mind-body influence is bi-directional and that a person can experience “visceral overload” when exposed to a traumatic event. He suggests employing healing modalities that recognise the mind-body-emotion connection, such as movement (e.g., Tai Chi), singing or chanting, and a wide range of mindfulness practices. Bessel is the author of The Body Keeps the Score: brain and body in the transformation of trauma.

Dr. Arielle Schwartz draws on neuropsychotherapy when treating traumatised people. This integrated mind-body approach incorporates psychotherapy practices along with neuroscience findings. She contends that it is possible to develop resilience through trauma recovery. Her approach is multi-modal, incorporating practices as diverse as exploration of family history, Eye Movement Desensitization and Reprocessing (EMDR), somatic therapy and mindfulness. Relationship building, positive psychology, reflection, reprocessing and resilience development are integral to her approach. Arielle is the author of The Post-Traumatic Growth Guidebook: Practical Mind-Body Tools to Heal Trauma, Foster Resilience and Awaken Your Potential.

Gabor Maté agrees with the approach of exploring what happened to a traumatised person, rather than trying to find out “what’s wrong with them”. He also adopts a non-judgmental approach to addiction, asserting that many people who suffer from addiction have experienced trauma in their life. In line with this thinking, he adopts and teaches an approach he calls “compassionate inquiry” which among other things helps a person to discover their “negative self-messaging” resulting from the experience of trauma. He aims to help the traumatised person to confront and name the underlying pain resulting from an identified trauma. He also employs a holistic approach incorporating “body-work”, mindfulness, connection with nature and self-care approaches such as proper nutrition and stress management. Gabor is the author of In the Realm of Hungry Ghosts: Close Encounters with Addiction.

Trauma-Sensitive Mindfulness

David Treleaven, creator of the Trauma-Sensitive Mindfulness Podcast, discusses the importance of understanding the window of tolerance when working with people who have experienced trauma. The window of tolerance is the level of arousal that an individual can tolerate in a productive way – they are able to share, process, and receive information when they are within this personally tolerable zone. Trauma, such as that suffered by some people during the pandemic, reduces the window of tolerance. David stresses the need to offer people who have been traumatised a choice of meditation anchors to avoid unconsciously triggering a trauma response. He is also acutely aware of the need to ensure that mindfulness practices are accessible for people with disabilities, especially physical disabilities. David is the author of Trauma-Sensitive Mindfulness: Practices for Safe and Transformative Healing.

There is widespread recognition that various forms of mindfulness can assist in trauma recovery. However, researchers and clinical practitioners such as Sam Himelstein, who has dedicated many years to working with traumatised teenagers, highlight the need to tread cautiously and sensitively when dealing with people who have experienced trauma. Sam offers insightful principles and guidelines for trauma-informed mindfulness. He found too that in some situations a conventional approach to mindfulness would not work as it would take a traumatised teenager outside their window of tolerance. He found, for example, that listening to music together built a connection and a trusting relationship so that the impacted teenager felt free to begin sharing both their trauma experience and what was happening for them. Sam is the author of Trauma-Informed Mindfulness with Teens: A Guide for Mental Health Professionals.

Reflection

Recovery from trauma frequently involves some form of somatic therapy such as somatic meditation, resting in your body or resting in your breath. This is often supplemented by other therapies that address the visceral impact of trauma, negative self-thoughts, supportive relationships and the flow of energy in the body. Overall, the complexity of trauma suggests the need for a holistic approach, as adopted by most of the practitioners discussed in this post. Health practitioners are becoming increasingly creative as they develop a deepened understanding of trauma and its impacts.

Underpinning many of the approaches discussed is mindfulness practice in one form or another. It is acknowledged that as we grow in mindfulness, we can identify our own traumas and their impacts, strengthen our connectedness and relationships, build resilience and adopt a positive mindset. Dr. Edith Eger, Auschwitz survivor and author of The Choice: A True Story of Hope, encourages us to explore our “inner landscape” and move from a victim mindset to true freedom.

Sounds True offers a Healing Trauma Program conducted by 13 of the world’s top trauma recovery experts including Gabor Maté, Jeffrey Rutstein, Peter Levine and Arielle Schwartz. The program offers practices, skills and tools that have proven effectiveness. The time frame for the program allows you to lean new behaviours and put them into practice, as well as offering Q & A sessions to explore what worked for you and any blockages to your progress.

Sounds True also offers a shorter 8 week course, Trauma and the Embodied Brain, conducted by Bonnie Badenoch, PhD – therapist, consultant, trainer and author of The Heart of Trauma: Healing the Embodied Brain in the Context of Relationships.

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Image by Gerd Altmann from Pixabay

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

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