Tag: hope

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.

Silence and Connection: Finding Peace in a Turbulent World

Last night I had the privilege of accompanying my wife to a fund-raising event at Stepping Stone Clubhouse in Brisbane – an organisation dedicated to enabling people with mental illness to rebuild and enrich their lives.  The speaker for the night’s event was Trent Dalton, author of two recent books that were the focus of his discussion.  Trent has become a best-selling author as a result of the first of the two books, The Boy Who Swallowed the Universe which features two boys who experience the darkness of adverse childhood experiences.  The second book he spoke energetically about is his recently released novel, All Our Shimmering Skies – two girls experiencing trauma feature prominently in this book which is also an expression of hope, of wonder and life’s endless mysteries and miracles.

Life beyond trauma

Trent had many adverse childhood experiences and related trauma – including an alcoholic father, heroin-addicted mother, heroin dealer stepfather and a criminal baby sitter.  His two novels then are part autobiographical, part fiction and part fantasy (“gifts dropping from the sky”).   His two daughters had questioned him as to why he wrote the first of the two books with boys as the focal characters when he in fact had two daughters.  So, two girls featured in the Shimmering Skies novel.

Trent mentioned that even though the books begin with darkness in the characters’ lives, they end with hope and wonder.  He wanted to inspire his daughters to be strong and resilient despite what life brings in the way of obstacles and adversity.  He also wanted them to believe in hope and a life beyond trauma as reflected in his own life – now as a multiple award-winning author who is internationally recognised for his writing craft and storytelling.

Finding peace in silence and connection

Trent spoke of his close connection to place and nature.   His home suburb, Brisbane’s western suburb of Darra, features strongly in his writing as does Darwin which he visited a number of times, mainly on assignment as a journalist.  He described with a sense of awe the natural beauty experienced during a guided walk through Litchfield National Park in the Northern Territory of Australia.  His closeness to nature is reflected in his wonder at even the smallest living creatures.

His connection to family and friends provided a very real grounding and enabled him to rest in the strength of these relationships.  Of particular note is his comment about how one of his daughters brought him very much “back to earth” after a whirlwind tour following his highly successful book, The Boy Who Swallowed the Universe.  At one stage when he was at home and dropping naturally into his effervescent storytelling mode, his 11 year daughter said something to the effect, “You don’t have to impress us now – you just have to be Dad to us.”

Trent’s Shimmering Skies novel captures something of the stillness and reflection he experienced observing the night sky through his window in Darwin or from his writer’s den in Brisbane.  His valuing of silence and stillness is reflected in his comment on Christine Jackman’s novel, Turning Down the Noise: The Quiet Power of Silence in a Busy World:

…a deeply personal assignment: treading bravely, beautifully into the wonder of silence.

Christine reminds us that life is full of noise, distraction and setbacks and yet there exists the wonder of stillness and silence – the unnameable space in which one was free to think and breathe and simply be.   We just have to learn ways to access the silence in our lives – something I experienced at 5 am this morning when I walked along the Manly Esplanade in Brisbane as the sun rose and reflected on the shimmering water of the marina.

Reflection

Trent was able to inhabit the wounds of his trauma by revisiting his adverse childhood experiences through the key characters in his two books.  In discussing his books and his life, he was able to be completely transparent and honest about his background, his challenges, and his small triumphs.  This openness and curiosity about life are hallmarks of mindful living.  By growing in mindfulness through reflection, writing and wonder, he could appreciate his connection to everything and his close relationships which are so central to his life and work.

I find it humbling and a source of gratitude that I personally was able to live a life of silence and contemplation for five years after leaving home and traumatic circumstances.  I have lived through many adverse childhood experiences in my early childhood and traumatic events later in life.  I found solace and peace in stillness and silence.

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Image by Ron Passfield – Sunrise at Manly Esplanade

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.

Making Meaning for Well-Being

Viktor Frankl, a survivor of four years in German concentration camps, wrote a landmark book, Man’s Search for Meaning. In the book he argues that our most fundamental drive is a search for meaning rather than a search for pleasure. He demonstrated in his life in the concentration camp and through his research, that while suffering is an integral part of life, we can find meaning in it. Subsequent research has confirmed that searching for meaning and pursuing meaningful actions develops personal well-being.

Joaquín García-Alandete, writing in The European Journal of Counselling Psychology (2015), reported the results of his research that demonstrated that the relationship between meaning in life and psychological well-being was significant. Michael Steger and colleagues found in their research that the search for meaning is present in all stages of life and that realising meaning in life contributed to well-being. Conversely, the absence of meaning in the latter stages of life contributed to a reduced sense of well-being.

Dr. Paul Wong maintains that meaning contributes to well-being by enhancing positive feelings, reducing depression and building hope and resilience in the face of adverse and stressful circumstances. Michael Steger and Joo Yeon Shin argue that happiness and meaning become more imperative in our technological age characterised by an anxiety epidemic, choice overload, constant demand for adaption and an ever-increasing pace of life.

Making meaning- aligning our actions with what is meaningful for us

The search for meaning alone does not guarantee well-being. Dr. Pninit Russo-Netzer found in her research that the key to well-being was prioritizing meaning within our lives. This ultimately means doing things that align with our purpose in life and that give meaning to our life.

Achieving insight into our life’s purpose and realising alignment through our actions is a lifetime pursuit that is aided by mindfulness. Pninit suggests that as we develop self-awareness, we can reflect on our action choices and test them for alignment with our values and their impact on our well-being … and make appropriate adjustments.

Pninit argues that our simple everyday actions can be the pathway to well-being because they enable us to cultivate meaning in our lives on a daily basis. We can effectively build meaning into our lives by giving priority to aligning our choices with our values and life purpose. Just the simple, conscious act of building a collage of meaningful photos can reinforce what matters to us, build a renewed sense of purpose and increase our energy for prioritizing meaning in our lives.

Dr. Paul Wong maintains that it is not enough to believe our life is meaningful and then indulge in a lifestyle that does not contribute value to society in a way that is unique to ourselves, to our core knowledge and skills. A life that consists solely in the individual pursuit of pleasure and or power is wasteful and is devoid of meaning – a reality that is born out daily in the lives of celebrities in the fields of sport, cinema and music.

As we grow in mindfulness through a focus on our purpose and what is meaningful in our life, we can achieve a sense of well-being that assists us to live more fully and to deal with the ups and downs of life. Mindfulness meditation and reflection enable us to assess the alignment between what we value and what we do – to determine how well we are prioritizing meaning in our life. These mindful activities help us to deepen our sense of meaning – and consequent well-being – through our everyday activities.

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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.