Tag: chronic illness

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.

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.

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.

Joni Mitchell: An Inspiration for People with Chronic Illness

Legendary singer-songwriter Joni Mitchell has been an inspiration to millions of people and particularly those who suffer from chronic illness or experience long-term disability.  You only have to look at comments on YouTube about her Blue Album to see how Joni has impacted the lives of so many people – people suffering from loss, grief, pain and stress and recalling the joyful moments and the feelings of hope when they heard her sing.   She has the ability to positively touch the lives of people of all ages, as evidenced by her triumphant performance of Both Sides Now at the 2024 Grammy Awards.  The recognition of her stellar career was reflected in her 10th Grammy Award that night and her earlier (2002) Recording Academy’s Lifetime Achievement Award.

Joni’s health challenges and courage

The story of Joni’s health challenges and her positive approach to overcoming them is a source of inspiration in itself.  She had to learn to walk again after being diagnosed with polio in 1952 when she was 9 years old.  She suffered the painful and crippling effects of polio for 40 years, initially overcoming the disease in 1995, only to then experience “post-polio syndrome”.  If Joni had accepted the mantra of many medical practitioners about aging, she could have taken their advice “to lie down and die”, accepting one of the myths of aging.  Instead, she chose to seek alternative medicine options and to fight on.

On a number of occasions, Joni spoke about her experience of Morgellons disease which she described in 2010 as a “weird, incurable disease”.   The Mayo Clinic describes the disease as creating “a belief that parasites or fibers are emerging from the skin” and involving  an “intense itching and sores”.  The Centre for Disease Control and Prevention in their 2012 report stated that the “skin lesions and/or disturbing skin sensations” along with “multi-system complaints” can result in a “significantly reduced health-related quality of life”.   Health problems reported by respondents to the research included chronic fatigue, overall poor health and cognitive deficits.   

Joni herself reported in 2014 that her immune system was severely taxed by the Morgellons disease which restricted her ability to fly and made touring impossible.  Her response to this debilitating disease was to say that she was not regretful about her condition but was enjoying the creative process away from singing – “painting, revisiting her music, prepping a four-act ballet or an upcoming collection of stories”.   This clearly reflects her indomitable spirit and her ability to focus on what she did have, not what she had lost.

Her resilience was again severely tested in 2015 when she suffered a brain aneurysm.   In an interview with Cameron Crowe in 2020, Joni stated that the aneurysm took more away from her than her polio – it “took away my speech and my ability to walk”.   Her ability to talk returned relatively quickly, but even at the time of this interview she still struggled to walk.  Doctors had advised her that she would “never walk again” but she stated categorically that she would walk again.  She indicated at the time, “I’m a fighter” (with Irish blood) and told herself, “Here I go again, another battle”.   

The aneurysm appeared to rob Joni of her singing voice, but in 2018 when some musical friends, including Elton John, turned up at her house for what had been famously called a “Joni Jam”, everyone was surprised and delighted when Joni joined in the singing with her “warm and familiar voice”.   Joni indicated that she was moved by the spirit of the group and stated that “I forgave myself for my lack of talent” (having “lost her soprano voice” and only being able to sing “a low alto”).  

Joni continued her fight against her chronic illnesses and, in 2023, made a triumphant return to concert singing in a three-hour Joni Jam organised by American singer-songwriter Brandi Carlile and involving friends such as Annie Lennox and Sarah McLachlan.   Joni’s life journey can be revisited through BBC Radio 4 Legend’s Podcast – seven episodes of the Joni Mitchell story.   Her journey into singing and songwriting can be reviewed through the Joni Jams Podcast which “goes album by album through Joni Mitchell’s entire discography”.

Reflection

During the most recent Creative Meetup, participants engaged in healing storytelling (in writing and orally) partly stimulated by Joni Mitchell’s song, Both Sides Now.  Joni’s emphasis on “I really don’t know clouds [music, love, life] at all” resonated with participants who shared their experiences of unintentional exclusion by others.

For some, the metaphors that we commonly used can exclude others whose experience differs, e.g., for people who are extremely “light sensitive”, metaphors such as “silver lining” or “let the bright side in” can contribute to their sense of isolation and exclusion.  For people who experience food sensitivity or allergies, metaphors such as “sweet as a mango” can be alienating.  For others, established traditions or practices such as enforced prayers as a child or Australia Day Celebrations can trigger memories of terror and/or loss.  As one participant noted, “Unless you are in my shoes, you don’t really know”.

The Creative Meetup hosted by the Health Story Collaborative provided ample evidence of the healing power of storytelling and the energy and insight generated by compassionate listening.  Jennifer Harris, the facilitator of the Meetup session on Zoom, introduced Emily Dickinson’s poem, “Hope” is the thing with feathers, and this led to a participant’s comment that “hope emerges from dark places” – sometimes, when there appears to be “no hope”.  As all participants in the HSC Meetup are people who are living with illness or disability or are carers, they were able to draw comfort, support and inspiration from Joni Mitchell’s struggle with ill-health.

My reflection on our Meetup is captured in the following Compassionate Listening poem that I wrote after our meeting:

Compassionate Listening

What you see is not what I see.

What you hear is not what I hear.

Your world is not my world.

Your feelings are your own.

I can’t know your reality.

I can only listen with compassion

… and openness to what is different for you.

I can learn to adopt a “don’t know” mindset.

As we grow in mindfulness through compassionate listening, reflection and sharing our story, we can deepen our self-awareness, cultivate openness and build resilience.

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Image by xiSerge 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.

Self-Care When Exploring Long Covid Symptoms

I mentioned in a previous post that I had thought initially that the peripheral neuropathy that I was experiencing was a symptom of Long Covid.  However, as explained in a previous post, I had discovered on investigation with my doctor that there was a structural explanation for these symptoms.  In that post, I encouraged persistent exploration of symptoms with our medical practitioner because our assumptions about symptoms may be misleading.

Self-Care in the face of disinterest or denial

One of the problems in discussing Long Covid with doctors is that there is no general agreement amongst medical practitioners as to what constitutes this condition (or even that the condition exists at all) yet doctors readily accept “fibromyalgia” as a condition.  Fibromyalgia, like Long Covid, involves a set of symptoms  such as muscular pain, cognitive disturbance and fatigue and, in common with Long Covid, symptoms vary with each individual.  In one sense, today’s patient experience with Long Covid diagnosis and treatment is similar to the experience of Lyme Disease sufferers who are faced with ignorance or denial.   This experience is eloquently described in case studies by Allie Cashel in her book, Suffering in Silence: Chronic Lyme Disease in the Age of Denial. 

In her book, Allie also recounts her own experience with Lyme Disease and other chronic conditions.  She strongly encourages patients experiencing any form of chronic illness that is typically denied by the medical profession to persist in sharing our symptoms with our doctor until we achieve a satisfactory outcome in terms of adequate diagnosis and effective treatment options.  Interestingly, she also shares her story and advice in one of the “stories shared for health” on the Healing Story Collaborative platform.  Her storytelling, which includes practical hints on how to approach your doctor with difficult symptoms, is presented in her recorded conversation with Val Walker, Being Fair Reporters: Self-advocating about Chronic Illnesses with Doctors.  Sometimes, self-care may require finding a medical practitioner who really listens and demonstrates that they do the necessary medical research and are across chronic health conditions such as Long Covid.

Reflection – my story to date

Previously, I discussed healing through storytelling as a way forward to recovery from chronic illness or disability.   This is in addition to qualified medical treatment that may take the form of medication and/or physical intervention.  As identified earlier, the problem with chronic illnesses such as Long Covid is that they contribute to a sense of isolation and can lead to depression, anxiety and other mental health issues.  Suzy Bolt’s Programme, Rest, Relax, Recover, addresses the emotional and psychological aspects by providing social support and healing modalities such as mindfulness practices, breathing techniques and group discussion.  In line with the healing power of storytelling, I am continuing my own story of exploration of my chronic symptoms such as peripheral neuropathy.

When searching for a medical practitioner who could help me diagnose my symptoms and suggest appropriate treatment, I came across a local doctor, David Eaton, who has dual qualifications as a General Practitioner and as an Occupational and Environmental Physician.  The breadth of his qualifications was a clue for me in terms of his willingness to explore complex, chronic symptoms and openness to the potential influence of Long Covid.  I have since discovered that he has several special interests that are relevant to my situation:

  • Musculoskeletal medicine, physical impacts of ageing and sports injuries
  • Skin conditions
  • Diagnosing and managing chronic and complex medical conditions.

David initiated a comprehensive investigation of my symptoms including blood tests.  Through David (via X-Ray and CT scan) I acknowledged a structural explanation of my ongoing experience of peripheral neuropathy in the form of spinal degeneration (including spinal stenosis and arthritis).   

The diagnosis of my symptoms is ongoing.  Compounding my current health situation is a group of symptoms that I have assumed are a consequence of Long Covid.  Gez Medinger in his Long Covid Handbook identifies three sets of Long Covid symptoms experienced by people categorised as experiencing mild disease but not hospitalised when suffering Covid initially (my experience as well).   The three sets of Long Covid symptoms that Gez identifies can be categorised loosely as: (1) increased intolerance to foods, (2) cognitive and physical exhaustion (including brain fog), and (3) increased heart rate (palpitations) and associated health issues.  I still experience unexplained symptoms of post-exertion malaise (Category 2) and increased intolerance of certain foods (Category 1 – what was previously experienced as “food sensitivity” is now being experienced as “food allergy” with the attendant aggravation of symptoms (changing from mild to severe).

David was aware that research has supported the observation that Long Covid can increase intolerance to specific foods.  He has also demonstrated that he is continuing to research the emerging literature on Long Covid – a criterion that is very welcome when seeking medical assistance with chronic and complex health conditions in our pandemic era.  David also reinforced the three elements of the health triangle – physical, psychological and social – and their interdependence.

Unfortunately, many patients experience an unwillingness of their doctor to acknowledge the existence of Long Covid or to make the effort to explore the growing research and anecdotal evidence of its existence and pervasive health impacts. 

As I grow in mindfulness through mindfulness practices and reflection, I can continue to challenge my assumptions, gain increased insight into my habitual behaviours, adopt appropriate self-care techniques and move to develop a new personal narrative that reflects my current situation of chronic disability.  In the process, I hope to gain the acceptance that Alexia Chellun describes in her song Allowing:

I’m allowing everything to just be
As it comes to me

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Image by iqbal nuril anwar 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.

Healing through Storytelling

A challenging medical diagnosis can turn your life upside down, make you question your self-image and increase feelings of isolation, particularly if it prevents you from actively engaging with your social or sporting network.  Dr. Annie Brewster M.D., who experienced these challenges when she was diagnosed with multiple sclerosis in 2001, found that medical practitioners lacked understanding and compassion for her situation – they were ill-equipped to help her deal with the internal fallout that accompanies a chronic illness diagnosis.  Annie is now Assistant Professor of Medicine at Harvard Medical School while actively engaged as a practicing physician in Boston at the Massachusetts General Hospital.

Annie, who had been quite athletic, found that her sense of identity was challenged by her diagnosis.  She discovered that by storytelling – writing her own story addressing her identity confusion, accompanying anxiety and resultant trauma – she was able to move towards recovery reframing her identity, restoring her own power in the healing process and building resilience to handle uncertainty and fear.  She recounts her story, and offers storytelling techniques with co-storyteller and journalist Rachel Zimmerman, in their book, The Healing Power of Storytelling: Using Personal Narrative to Navigate Illness, Trauma and Loss.

Healing through storytelling

Through her book, Annie helps chronic sufferers to process their challenging emotions, create their own healing story, reframe their identity narrative and reconnect with people close to them as well as the wider supportive community.  She encourages us to utilise whatever medium we are comfortable with – whether art, music audio, video or writing – to share our healing journey and accompanying story.  The techniques she and Rachel offer can help us in that process. 

Inspired by her own positive experience of healing through storytelling, Annie created the Health Story Collaborative which acts as a platform for people to share their stories of health challenges and recovery.  The Collaborative offers a medium for overcoming the isolation of chronic illness and is “patient-centered and research based”, drawing on the research providing evidence of the therapeutic power of storytelling.  The Health Story Collaborative enables people to share their stories of illness and healing and offers multiple modes for doing so.  There are videotaped Healing Stories Sessions (accessible to anyone), as well as Audio Stories (available for public consumption).  You are encouraged to share your story of illness and recovery and the options also include music, art, poems, written stories or alternative media.  Some of the more helpful stories are featured on the collaborative blog.

Storytelling about my own diagnosis of a chronic disability

I have recently started writing my memoir, inspired by Jeff Brown’s online course, Writing Your Way Home.  One of my motivations has been the opportunity provided by storytelling to work through my personal experience of trauma.  Almost simultaneously, I have received a diagnosis of spinal degeneration resulting from “wear and tear” over my 76+ years.  A contributing factor was a serious car accident when I was 12 years old, with the undiagnosed injury aggravated by playing competitive and social tennis over 65 years. 

I am now confronted by the challenge of rehabilitation and the loss of my capacity to play tennis, cutting me off from the game I love and my social tennis network (one of my few social activities).  I can relate especially to what Annie calls the need to “integrate a traumatic health event into a new and evolving identity”.  I have to reframe my identity from my self-image of a fit, competent tennis player, which has been an integral part of my life to date.

Reflection

Ash Barty has provided me with inspiration and encouragement through her own life story.  She has also made me realise again why I loved the game of tennis.  I’ve been reading Ash’s memoir, My Dream Time – A Memoir of Tennis and Teamwork, which could alternatively be called Developing Resilience through Adversity (as she documents her multiple injuries, mental health challenges and recovery strategies).  Ash, the smiling assassin, who achieved World Number 1 WTA singles ranking for 114 weeks, shares openly her battle with negative self-messages, including the inexplicable negative self-talk about “not being good enough”.  

I can relate deeply to what Ash describes as the pleasure she developed in playing tennis – enjoying the game for its own sake and finding “love in the marriage of movement and timing and speed and strength and guile and nerve” (the willingness “to go for your shots”).  I found sheer enjoyment in my competence at tennis and my ability, even in my seventies, to surprise my opponents with unpredictable shots (such as a backhand half volley drop shot, a shot down the line or a half volley backhand lob).  I would often mentally record the competent shots that I played and still to this day can replay some of them mentally as if on videotape.  I undertook this process of recall and replay of my best tennis shots to build my sense of self-efficacy in playing tennis.

It is interesting that Ash talks about her slice backhand as her competitive advantage.  In her words, the slice backhand produces “ an unpredictable low bounce” and is created by hitting the ball “with enough angle and speed to generate a fade”.   Ash, through her slice, changed women’s tennis game at the elite level.  In the mid 1970’s, I used to employ a slice backhand as my main attacking shot when playing competitive tennis … and I would follow it in to the net to complete an attacking volley as my opponent would have to hit the ball up to clear the net.  However, over time while playing social tennis, after my competitive tennis days were over, I stopped using my slice backhand – for unknown reasons at the time.  On reflection, I discovered that what had got in the way of my using this particular shot was a form of cognitive blind spot – I had unconsciously begun to view it as “not a real shot”.  Ash’s resurrection of the slice in women’s tennis made me realise that I had unwittingly discontinued a shot that gave me a competitive advantage.

Ash at one stage in her book talks about “acceptance” – everyone is imperfect and “we’re all unique, all fallible and all with our own foibles”.  It is the nature of being human that we are prone to making mistakes and subject to life-changing mental and physical challenges.  We need to acknowledge the fragility of the human condition, accept what we can’t control, and act on what we can change for the better.  Mindfulness can help us to develop resilience in personally challenging times.

As I grow in mindfulness through reflection, meditation, writing and storytelling, I hope to develop a new narrative about my evolving identity, grow in self-awareness, and strengthen my courage to undertake the necessary, ongoing rehabilitation.  Life’s challenges can “make or break us” – mindfulness can help us to remain grounded, develop resilience and explore creative options.

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Image by Chen 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.

Lifelong Learning through Reflection

Ortrun Zuber-Skerritt and Richard Teare in their edited book, Lifelong Action Learning for Community Development, highlight reflection as core to action learning and lifelong learning.  Hospitality entrepreneur and author, Chip Conley is an exemplar of lifelong learning through reflection.  In his podcast interview with Tami Simon, he emphasised the role of reflection in his entrepreneurial career.  Chip had a secret process of recording his learnings in a weekly bulleted list based on his reflections about the previous week and what he learned from each significant encounter.  His reflective Wisdom Books in the form of notebooks were developed over many years and provided the ideas for his five published books on leadership, entrepreneurship, peak organisational performance, psychology and marketing.

Mutual mentoring – the Modern Elder

Chip was the founder and CEO of a chain of boutique hotels, Joie de Vivre.  He sold them after 24 years following a near-death experience a few years earlier.  This “flatlining” experience was the catalyst for him to think about what he wanted to do with the rest of his life and also changed his orientation from an efficiency-driven “to do list” person to a “to be list” person who was prepared to slow down and appreciate beauty and aesthetics.

He came to a clearer understanding of the difference between intelligence and wisdom and began to repurpose his life around sharing his insights and encouraging people to develop wisdom.  Reg Revans, the father of action learning, had also highlighted the difference between cleverness and wisdom and pointed out that wisdom, not cleverness, is necessary when confronted with unfamiliar conditions or situations.  For Reg, admitting what we do not know is the starting point for the development of true wisdom.

Acknowledging what he did not know became a critical component of Chip’s new career move after the sale of his boutique hotel chain.  He had been approached by the three founders of Airbnb to work fulltime in the company as a mentor and strategic adviser.  He found himself as someone in his fifties mentoring people in their twenties.  This led to a mutual mentoring arrangement where he shared his knowledge and experience re strategy and marketing in the hospitality industry and gained knowledge from the founders about the digital world and its impact on business management and growth. 

Chip wrote his book Wisdom at Work: The Making of a Modern Elder  to “share his experience of being both a mentor and an intern”.   Jack Welch, when CEO of General Electrics (an action learning-based company), also employed the concept of “mutual mentoring” between senior executives and young technological experts within the company.

The Modern Elder Academy

This experience of mutual mentoring led Chip to establish The Modern Elder Academy to enable people to make the midlife transition in a way that was enriching for themselves and others.  Through his personal experience and insight, he recognised that there was an unmet need to help people in midlife to transition to their new reality (whether that be impending retirement, role as a carer, transitioning to a new career or experiencing the onset of chronic illness).  He maintained that rituals, training and tools existed for other transitions in life (such as puberty, graduation from school or university or marriage) but not exist for those who were transitioning to the midlife stage (35-70). 

The Modern Elder Academy is designed as a “place where people cultivate and harvest their wisdom” and “reset, restore and repurpose” their life.   Chip’s academy, described in a Forbes article as a “Cool School for Midlifers”, is very different to any other academy and incorporates learning entirely new skills such as surfing and bread making and incorporates the development of mindfulness through a “silent contemplation park” and periods devoted to meditation, reflection, yoga, “wisdom circles”, appreciating the beauty of nature, and a desert-based vision quest (in the extended version only).

 One of the core challenges people experience at the Elder Academy is what Chip terms “midlife edit” – letting go of old beliefs and patterns and acquiring a “growth mindset” where the emphasis is on getting rid of baggage, developing a flexible mindset and focusing on self-improvement and personal growth.  Cliff explains that his experience of mutual mentoring led him to adjust his mindset from that of a CEO and industry leader to an “Intern”, to acknowledge that he needed to learn about the digital world of business from millennials and to shift from “being interesting to being interested” – a transition that requires deep listening.  Participants who complete the one-week “curriculum” receive a “Certificate in Mindset Management”. 

Reflection

We can grow in mindfulness at any stage of our life.  However, what Chip offers through the Modern Elder Academy is a structured way of developing mindfulness, processes for changing fixed mindsets and an opportunity to repurpose our midlife in this transition period.  The added advantage is the community dimension – making this journey with others and developing a deep sense of connectedness to nature and others (by sharing our common humanity, midlife challenges and growing wisdom).

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Image by Benjamin Balazs 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.