disability – Grow Mindfulness

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 10^th 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.

Trauma Sensitive Mindfulness: Accessibility for People with Disabilities

David Treleaven, author of Trauma-Sensitive Mindfulness: Practices for Safe and Transformative Healing, organised an online Meet-Up to explore how to provide accessibility for people with disabilities. While many of us experience psychological disabilities or hindrances because of trauma and adverse early childhood experiences, the focus on this Meet-Up session was on facilitating access for people with physical disabilities. The insights and suggestions are relevant to facilitators of any group of people, not only those seeking to engage in trauma-sensitive mindfulness training or facilitation.

Awareness of disabilities

To increase awareness of the nature and range of physical disabilities for facilitators/trainers, David introduced the topic of accessibility by highlighting the “massive and complex” area of people who have a physical disability or impairment. He stressed that as trainers/facilitators we are not aware of the different impairments of participants and the impacts on their ability to access what we are sharing in a group environment. He emphasised the need to undertake an “accessibility check-in” early when facilitating a group to ascertain the particular needs of people in the group.

Given the interactivity and diversity of physical impairments, it is not possible to anticipate all the access needs of everyone – so a check-in is essential. David helped the Meet-Up group increase their awareness of the complexity of disabilities and their impacts by having three people with lived experience of disability (and experience in advocacy for people with disabilities), who told their stories in a moving, disarming way. Among other things, their presentations highlighted the prevalence and unique combinations of impairments that people do experience.

For instance, each of the three presenters identified that they experienced hypermobility – pain in joints (e.g. knees, fingers, hips) that typically extend beyond the normal range. It can manifest in diverse ways including the inability to stand, sit upright or walk for any length of time and can vary over time or on any given day. A specific form of the hypermobility spectrum, known as the Ehlers-Danlos Syndrome, can be particularly debilitating and limit the capacity of an individual to engage in the normal range of mindfulness activities such as mindful walking, adopting an upright sitting position or standing. The Ehlers-Danlos Society provides a wide range of community resources for people suffering from this syndrome and others who wish to learn about its manifestations and impacts.

Different manifestations of disabilities and their impacts

Each of the three presenters reinforced the benefits of mindfulness meditation for people experiencing disability and/or chronic pain. However, they drew on their lived experience of disability and pain to share their stories of experiencing difficulties in effectively participating in meditation groups because of a lack of awareness of facilitators/trainers and willingness to make adaptions to their meditation process to enable full access for people experiencing disability.

Heather Boyes spoke about her chronic pain from hypermobility and her environmental sensitivity and, in particular, her sensitivity to fragrances – an impairment exacerbated by the ubiquitous presence of fragrant hand sanitisers and cleaning products as a result of COVID -19 in the community. Her allergic response can range from swollen lips to a “series of stroke-like headaches” and anaphylaxis. She has found that mask wearing brought on by COVID-19 restrictions does not help her as pointed out that we have “olfactory receptors” in every organ, especially the skin.

Heather’s sensitivities extend to touching things like mould, experiencing a lack of airflow and transitioning from inside to outside (changing to a different environment which includes temperature differences).

Heather also explained that public places could result in allergic-type reactions due to sensitivity to lighting, “blue light” from computers and other digital devices and sunlight. All of her senses are heightened by her condition, so that she is even affected by phone transmission.

Heather’s suggestions to make a meditation space accessible to her and others include:

Ensure people are aware of fragrance sensitivity and advise participants in advance not to wear strong fragrances to the meditation sessions
Ensure there is ready access to clean airflow
Be conscious of potential industry smells from nearby factories/workplaces
Have all mobile phones on flight mode before switching them off
Be aware of a person’s emergency contacts and whether they use medication or an EpiPen for emergencies (such as anaphylaxis)
Don’t assume that products branded safe (such as essential oils) are safe for everyone.

Cheryl Harris spoke about her connective tissue disorder that was diagnosed 19 years previously. Her hypermobility manifests in difficulty in walking and standing and pain in her arms, hands and shoulders leading to migraines. Associated with these disabilities is “visual impairment” and difficulty with computer screens. Cheryl found that she experienced considerable difficulties during chronic pain meditation classes despite the trauma-sensitive approach adopted by the trainer. Her physical impairments meant that the meditation sessions were relatively inaccessible for her.

While everyone in Cheryl’s meditation class had chronic pain, she was the only one with mobility limitations. This meant she could not participate in standing meditations or mindful walking. It left her watching and not participating. She left her initial meditation class after 12 years because of the physical and emotional strain involved and joined another group that she was better able to engage with.

Cheryl’s suggestions for meditation trainers and facilitators include:

Recognise that you have the responsibility to find out students’ accessibility needs – it is not the students’ role to initiate this discussion
Establish access needs early on, e.g. “What would help you to feel welcome?” (she stated that the specific words do not matter – it is the awareness and sensitivity that really matter)
Recognise that students may have experienced stigma because of their disability
Don’t assume that people in pain have a disability or that all people with a disability are experiencing chronic pain
Use the language that the person in front of you uses (How do they describe their impairment? – textbook labels do not help because disability is a highly individualised and complex phenomenon)
Consider how intersectionality plays a role, e.g. in increasing the possibility of social isolation, for instance, for someone who has a disability, is a woman and an Aboriginal.

Cheryl provided an excellent resource titled, Adapting Mindful Practices to People Who Have Special Physical Needs.

Tara Beech explained that she suffers from fibromyalgia and hypermobility. She indicated that chronic pain meditations are particularly difficult for her. When she pays attention to her pain she experiences a burning sensation under her skin – resulting in the only pain-free area of her body being under her lips and her left eye.

Tara has decided that she has to treat pain like trauma and adopt a pain-sensitive approach to meditation (not unlike trauma-sensitive mindfulness). Her approach involves:

Cutting slack for herself through self-compassion
Meditating when she feels well
Lying down as the stress of sitting up triggers an allergic reaction
Avoid going beyond her “window of tolerance”.

Tara’s suggestions for facilitators include:

Helping people differentiate between “difficulty” and “distress”
Allow people a choice of anchors (and, where possible facilitate this choice through a session dedicated to choosing)
Encourage a change of posture where appropriate
Be aware that some anchors can cause stress, e.g. the increasing number of people who experience distress/trauma when using breath as an anchor because of personal experience with COVID-19 illness and/or asthma.
Encourage participants to savour something in their life, e.g. a person, an image, an experience, a skill-set or an achievement – this can provide a very pleasant and positive anchor and enable a person to focus on something other than their pain , loss or distress
Willingly explore the “space of disability” (Including neuro-divergence, auditory sensitivity and auditory impairment)
Be willing to explore “work arounds”, be patient, and be flexible (not static).

Understanding shame

Each of the presenters spoke about the shame they had experienced in certain meditation situations. Shame was catalysed by being different, being the only one with a particular impairment, inability to fully participate, and/or divergent behaviour (e.g. having to lie on the floor which was considered “poor form”). They experienced shame because they felt that they were creating a disruption, distraction or dislocation as a result of their unique set of needs arising from their diverse disabilities. In the text chat during the Meet-Up, Dana Baron commented that shame is “stigma turned inwards” and that shame can impede/hinder a person from accessing necessary resources or adaptions/adjustments.

The presenters suggested that “shame will be in the room” and there is a constant need to be gentle. It will also require of the teacher/facilitator a willingness to “have a go”, to accept that you will “not know what to do” in some situations. Some impairments will be invisible (especially in an online environment), so it is important to offer choice and support (despite the inconvenience and the challenge to move outside your “comfort zone”).

Reflection

At the time of listening to the Meet-Up, I was spending most of my days with my feet elevated as I was suffering from an infected ankle – I could relate to the pain associated with walking and standing when you have a disability. It reminded me of the time when a disc in my back collapsed and I spent 18 months in continuous sciatic pain (along with pneumonia in the early stages) – a condition resulting from the trauma of my mother dying and an arduous flight to and from Cartagena in South America (36 hours each way) as well as the cultural shock.

Listening to the presenters, I also became aware that I have some form of environmental sensitivity (which I had not named before) – I experience “exercise asthma” when playing tennis in cold environments and sweating at night when the humidity is very high (over 80%) and the wind speed is low (below 10 kph).

As we grow in mindfulness we can become more aware of what other people are experiencing, more sensitive to their needs and more courageous in taking appropriate, compassionate action.

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Image by Jackson David 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.

What Absolutes Are Holding You Back?

In a penetrating video presentation, Lance Allred asks the questions, “What is Your Polygamy?” Polygamy in the context of his talk is a metaphor for the “absolutes” that we carry in our head from childhood (absolutes that have been reinforced by our own self-stories and by the projections of others). Lance was raised in a polygamous Mormon community established by his grandfather. The community’s beliefs were very “black and white” – no room for grey. Polygamy was practised because of the belief that the more wives you had, the closer you were to God.

Lance’s absolutes included the following:

He had to prove himself to God and man because he was born defective as a legally deaf child
Mormonism is the one true faith and you can only get to Heaven if you are faithful to Mormon beliefs.

Lance escaped from the Mormon community at the age of 13 years, but he maintains that it is taking him a lifetime to escape his “absolutes”. He did become the first legally deaf NBA player, but this became another trap – he became captured by the lights and accolades to the point were his sense of self-worth was dependent on the views of others. He won the praise of others but began to lose his integrity. He was so caught up with defining himself as an elite basketball player that when he was cut from the NBA team, he was severely depressed and entertained suicidal thoughts.

What are your absolutes?

Our absolutes are “culturally indoctrinated” and embedded in our everyday language – they live underneath the “shoulds”, the “musts” and the “have to’s” that we tell ourselves daily and use as excuses when confronted by personal challenges or the requests of others (either explicit or implicit requests).

Lance contends that knowing our “absolutes” is a journey into “self-intimacy” and overcoming them is a lifetime challenge of moving outside our “comfort zone”. He argues persuasively that “we were not born to be caged within our comfort zones” – places of comfort created by our absolutes that we mistakenly view as giving us certainty in an increasingly uncertain and ambivalent world.

Our absolutes hold us back from becoming what we are capable of being. We fear failure because with new endeavours we will need to move beyond what we know and are comfortable with. We are concerned about what people will think of us if we don’t succeed in our endeavour, particularly if we put ourselves “out there”. Lance, however, maintains that “you are bulletproof if your worth is not tied to an outcome” – in his view, by being authentic and true to yourself, you can overcome fear and rest in the knowledge that your worth can never be challenged or questioned. Growth comes through discomfort, and failure contributes to growth because it precipitates deep learning about our self, our perceptions and our absolutes.

Reg Revans, the father of action learning maintained a similar argument, when he said:

If you try to do something significant about something imperative, you will come up against how you view yourself and how you define your role.

Don’t let others determine what you are capable of

Lance stated that others can reinforce the cage of your comfort zone by projecting onto you their own absolutes and/or fears. He tells the story of his first game as an NBA player that he came to play because someone was injured, and a replacement was not readily available. The coach told him not to try to do too much, just settle for one or two goals and lots of defence. He was effectively communicating his belief that Lance could not accomplish more because of his deafness disability. Lance went on to score 30 goals in his first game as well as 10 rebounds. His message as a result – “don’t define yourself by your disability and don’t let others determine what you are capable of”.

Often people associate deafness with both physical and intellectual disability. As Lance stated, the greatest challenge he had to face with his disability was not the disability itself, but others’ perceptions of who he was and what he was capable of.

Lance had been profoundly deaf since birth and had difficulty talking in a way that people could understand. He spent thousands of hours in speech therapy and has become an accomplished public speaker and author. I discussed his latest book, The New Alpha Male, in a previous post.

Reflection

In another video presentation, Lance contends that moving beyond our absolutes and associated fears takes perseverance and grit, traits that he maintains define leadership. I can relate to the need for perseverance and grit in moving beyond peoples’ expectations of what you are capable of when you experience a disability.

In 1974, a disc in my back collapsed resulting in my inability to walk or even stand without extreme sciatic pain. I was told that I would never play tennis again. However, over 18 months, I undertook every form of therapy I could lay my hands on – chiropractic treatment, remedial massage therapy, hydrotherapy, acupuncture, light gym work, physiotherapy and osteopathy. When using the exercise bike in a gym (I hate gyms!), I would envisage playing tennis again. My osteopath, Dr. Graham Lyttle, got me back on deck and I having been playing social tennis weekly for the last 40 plus years.

I can also relate to Lance’s concept of “absolutes”. As I used to play tennis fixtures at an “A” Grade level, I have carried in my head the absolute that I should not make a mistake at tennis. Managing my expectations around this personal absolute, has been a constant challenge. I can take to heart Lance’s exhortation that if your self-worth is not tied to an outcome, you can overcome your absolutes and become what you are capable of being.

As we grow in mindfulness, we can become aware of our absolutes and how they play out in our lives and develop the self-regulation and courage required to move outside our comfort zone and realise our full potential. We can move beyond our procrastination and undertake our meaningful work.

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Image by John Hain from Pixabay

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

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