Wide-awake

I love it when I feel compelled to stop my academic writing because I am so inspired to share some insights. (Also known as procrastination…) M. Green (1995) writes in “Releasing the imagination: Essays on education, the arts, and social change” the following:
“When, however, a person chooses to view herself or himself in the midst of things, as beginner or learner or explorer, and has the imagination to envisage new things emerging, more and more begins to seem possible”
Green takes this further talking about a focus on “wide-awakeness, the notion of wide-awakeness brings one to consider becomings – incessant co-construction that are never complete, as the Self is always in flux” (p. 72). He refines the idea of wide-awakeness as an “awareness of what it is to be in the world” (p.35) through which “persons [become] conscious of their own consciousness” (p. 65). This is our quest and I think our call at present. It is no longer enough to just be awake, we have to be wide-awake. This is a quest, “our consciousness must evolve through our interactions in and with the world”. We learn and grow only in the midst of things, as Brene Brown talks about getting into the arena. It is messy, you are going to get your nose bloody, it is real, but it is the only way to Be.
There has been a great new wave of gurus preaching about our being-in-the-world. This call is to go yet another level deeper, to become conscious of our own consciousness. What does this mean? For me it is about knowing that we can no longer just accept that we are (relatively) awake, that we can no longer pride ourselves in just being conscious. We need to go much deeper to where we consciously contemplate our consciousness, where we look in the mirror with intent, notice our Selves for who we really, Thinking, Becoming, Evolving. But as important that we are interwoven as the root system of the bamboo, rhizomes that weave horizontally and vertically, shooting up into the light Divine moments of articulation.
We are part of the great Imagination, and whilst I think we are not unique in our thinking capacity, it is this imagination that is the essence of our humanness. We can, and indeed should, be part of the Imagination to avoid what Green calls “petrification”, aptly described by the Oxford dictionary as “a state of such extreme fear that one is unable to move”. This is what I notice more and more, people being paralysed by fear. Albeit the fear of the Other, climate change, terrorism, crime, when we can no longer imagine we become petrified. Through our imagination “the storied landscape that we co-create with our participants is alive and richly hued”. This is our Becoming, when we create the storied landscapes of the Imagination.
How do we do this? I think it comes through engaging with the simple things in life. We know all this. We must just do it. Listen to wonderful music (not while reading or doing anything else, just listen to the music), read poetry, go to an art exhibition, write a letter (by hand on paper) to a friend, lie on the ground and look up through the trees, work in the soil to plant something. Walk alone in nature, which to me is still the most wonderful form of meditation. The more time we spent alone with our Selves, the more we will become conscious of our own consciousness, the more we will hear our own Self guiding us to become wide-awake.

Spring

Spring is here in all its splendour. The mornings are bright, chirped on by a chorus of birds announcing the break of day. The light is crisp, it is as if one can almost hear the trees pushing out gentle new green. After the rain the smell of the soil fills the evening air. The headyness of blossoms hang gently in the moonlight.
Amidst the calm the silence is broken by gunshots from Imizamo Yethu. Another reality cracks like a whip through the softness of the evening. The two sides of the coin. The yin and the yang.
Where do I focus my heart? How do I lie in my hammock contemplating the abundance of the universe when a few kilometers away a life might have just been lost through a bullet that was randomly shot in anger?
This duality is part of our reality of living in South Africa. I see more and more people caught in the angst, not being able to tear their focus away from the existential angst, the unbearable sadness, the fear and hatred. More and more people talk about anxiety attacks that grab them in the middle of the night, or whilst navigating the chaos of traffic on our crazy roads.
We are bombarded and ambushed every time we look at our phones or computers. The climate change rhetoric has reached a point of hysteria that is almost impossible to escape. We feel trapped, defeated, overwhelmed. Angry. Guilty.
For many older people this feeling is even more acute. Their guilt – in spite of really having done their best with what knowledge they had – is exacerbated by a feeling that they have become a care burden on the world economy, the grey tsunami. Many have lost their sense of purpose.
Where is all this heading? How do we get to any point if stillness? How do we centre ourselves, see the wood for the trees? Is there a safe space where we can Be? My new rule for myself (I have so many rules) is to not look at my phone first thing in the morning. I get up and walk the labyrinth, raise my eyes to the mountains, breath in the crisp spring air, listen to the birds, and contemplate kindness. My mantra is “be still and know that I am God”. (Not God as person, but as Divine Knowledge). Then, because it is impossible to not look at my phone, I open instagram.
And there this morning is the most beautiful photograph shared by my friend Pete Britz. With these words by Rachel Hartman: “We are adrift, and the thinnest breeze may blow us where it will”. The photograph is of coral petals and num-num leaves floating on a stream. And suddenly it all makes sense. These “moments of articulation” (Dalene Swanson) define our Being. Adrift, floating through this thing we call Life, we are not but petals on a stream, we are excruciatingly beautiful expressions of Nature. That is my choice of thought for today.

Food for thought

The Aging and Social Change conference provided a lot of food for thought. One presentation that stood out was about PRECARITY and the vulnerability of older people. The social and political changes globally are exposing more and more older people to neglect and abuse. With more older people being connected to social media and the digital world, scams that defraud them are at the order of the day. The spreading of fear via fake news is now a reality for more and more older people who quite often do not know the dubious sources of such news.
Butler (2006) says about precarity that many older people are at the mercy of being deconstructed as ‘devalued’ subjects, especially in our approach to what we perceive as “their needs”. This is an interesting point, and was popularised by Foucault’s “medical gaze”. How do we “see” older people? Looking at the term precarious, it is a condition where one is ‘vulnerable to the will or decision of others’. This stopped me in my tracks, thinking back on my own working life that has been so focussed on screenings and assessments, which while I still believe in their importance, I now wonder at their execution and the impact they have on Elders.
Any assessment or screening comes with power struggles and an imbalance between the assessor and the assessed. We all know what it feels like to be measured by a school or university system, or to do a driver’s test. Mostly there is a feeling of huge anxiety and stress, and more than often we leave the examination room feeling like we not only might HAVE failed, but often that we ARE indeed a total failure. In geriatric assessments, the focus is usually only on decline, what you can no longer do rather than on your strengths. The very system of assessment and screening leaves one acutely aware of failure, loss and inadequacy. Nothing can be more daunting and frightening than a Mini Mental or Cognitive screening to leave a person feeling completely hopeless, lost, disconnected. The situatedness of this process leaves very little room for any discourse of growth or potential, and one is suddenly reduced to the status of OBJECT.
We are interrelated, connected, contextual individuals within hybrid structures of social spheres where our Being-in-the-world is performed with intricate subtlety that are shaped like the waves in the ocean, crashing, folding, retreating in ever perfect beauty, generated and fuelled by a force much bigger than us. Our multi-layered, textural complexity as human beings cannot and should not ever be reduced to data, for then we are at risk of becoming mere objects of observation, reduced to statistics in a scientific framework. And if we do not neatly fit into at least the center of that framework, we are given the disease label: dementia, ADHD, bipolar, abnormal. And suddenly, the way the world sees us will change. We are now an object to be studied, a “case” to be examined, a file in a cabinet. Our own thinking space is now infiltrated, contaminated by the label that some “expert” bestowed on us. And we inevitably start acting our label and losing our identity. This label changes our discourse and the way that we see ourselves. We are seen as being ‘bad’ as we do not comply with what is commonly prescribed as “successful ageing”. We are a failure, a burden, a problem, something that many older people act out with great gusto!
God help us that we should be afforded the label of being demented…
The precarious position of being OLD leaves many of us at the mercy of the so-called experts, mostly with good intentions, who make it their business (literally) to label us in order to better “care for us”. Think about it: “our assessment shows that your Mother needs to move to a Care Home/must go on this medication/needs this help”. How often do we consider the most important person at the center of our expert assessment? Not often enough. We have become frighteningly “sophisticated” in our medical gaze. Or rather, we have become barbarically disconnected from the sacredness of the Human Spirit (Desmond Tutu). Mostly because we have become more and more disconnected from empathy.
True empathy (in my opinion) is to feel the vulnerability of others. It is not something that we can teach (I have said this often). We learn empathy by spending quality time with others who are different from us, older or younger than us, more or less fortunate than us. We do not learn empathy on Facebook or in our echo-chambers of friends who are all more or less like us, having lived a life of white privilege and similar social standing. It requires reaching out, spending time, being present, listening, honouring the silences. That is when we begin to feel. And next time we connect with someone in a similar position, we will recognise that feeling, and we will act in a different manner. The person will no longer be just an object of our observation, but a subject that we want to connect with, and the vulnerable person will have agency thanks to our empathy. The way we feel when we look at a homeless person, a person with severe memory loss, the prisoner, will tell us what our empathy barometer shows.

Time to wake up!

Interesting that it takes a young girl from Sweden to call us to a form of accountability regarding our covenant with the Earth. Feisty, angry, articulated she stands on the world stage telling us how we have betrayed the youth, how we have left them no future. We have destroyed the planet. It is no longer a call to action, it is a verdict, the damage is done. According to a professor at Wits University, we have ten years left before the planet will no longer be inhabitable. We will not be able to replace what we have destroyed – especially bees, butterflies and other insects. In spite of these absolute facts, we seem to go from complete denialism to total paralysis. We watch Greta sail from Sweden to America as if we are watching a fascinating real time movie, we follow her every move, applauding her bravery. We are fired up by her speech, waiting for her take on Trump and the United Nations. And when the news is over, we carry on as usual. Even more disturbing is how some men take exception to being called out by a young girl…
The Wits professor aptly says “there is not a household in South Africa that does not have a can of Doom”. Why do we not see the urgency of the situation? What has happened that we can be so callous, so apathetic? I am working on a PhD, by the time I have finished this there will be eight years for me to enjoy the fruits of my labour. I consider myself to be a thinking, spiritual, evolved, sensible individual who deeply cares about and for the Earth. Yet, I will not think twice about spraying Doom. I recycle, only because someone else is doing the hard work. I do not use environmentally friendly products. I drive a diesel car. I fly on intercontinental flights at least once a year, if not more. I try to use less water than before the crisis, using shower water to flush the toilet, mainly because I was forced to do it. I still have many single use plastic items in my house. Basically, all things considered, I am one of those people who do not give a shit if I have to be totally honest with myself.
How do we call ourselves to accountability. What will it take for us to individually and collectively become the responsible people that we so easily pretend to be? The smokers amongst us, knowing full well the harms of cigarette smoke, carrying on with their habit. Knowing how our skins absorb harmful chemicals, do we look at the products that we use to wash our hair, brush our teeth, or lather our skins? Knowing the impact of an unhealthy diet on our brain health, the impact of not exercising, do we change our ways? Nope, we don’t. Is this a result of nihilism, a kind of fatalistic, materialistic, capitalistic stubbornness in which we simply refuse to become more Mindfull? What the &$%#$@^%$ is wrong with us? I don’t know. I honestly do not know. Well, we have ten years left. Is it possible that for some people this is actually good news? I do not have to worry about getting old, about having enough money, about becoming frail and in need of care. I will stand on the deck singing while the Titanic is sinking. Somehow, I do not think this is such an absurd assumption. Our inability to plan for the future, to contemplate our own mortality is now no longer an issue. We don’t have to think about it, we will not be here…
If however the Prof at Wits is right, the next ten years will not be a joy ride. The end will not simply be an apocalyptic flash, a meteorite wiping the earth in one swoop. If there are fewer and fewer insects, food production will become more and more problematic. We will have to rely more and more on genetically modified and artificial nutrition, food will become more and more expensive, there will be more and more poverty, famine. Our resources will become less and less as the temperature of the earth rises. (I am by no means an expert on climate change, but the little snippets that I have read is enough to scare the living daylights out of me…). People will kill each other for basic resources like water. Yet, I see no plans in South Africa to address any of these environmental or climate issues. We plod along happily mining for coal. This state of affairs is beyond comprehension, yet we all carry on, regardless.

What is the point of all this? Is there an answer, a magic wand, a way out? I think somehow not. We are here, we have created this mess, we are going to have to see it through. At least we all know now that we have ten years. What are your plans? What would a ten year plan look like, a plan to at least try and make an effort to extend life on earth, to make it more habitable? I think it starts with looking inward, not outward. To see one’s place on this earth as a global citizen, to understand that as an individual I have an impact. But I can only comprehend my impact if I understand my Self, that I am part of the bigger picture, that I am Connected, and that I am here for a reason. I am the manifestation of that which breathes this Life into Being. I am Divine Consciousness. I am inextricably bound, connected, part of this Universe, and with that Knowing I am response-able. I AM able to respond, not just react. If I can come to this point of realisation, I will take my Being here as a Divine calling. It is my duty to repair this world. Through my Mind, through my Kindness, through my Empathy, through my Understanding. (Some of you might wonder, even be irritated, by my use of capital letters. I do this on purpose to illustrate that which is beyond the concrete, everyday, touchable so-called ‘reality’. Whatever it is you want to call it, I assume that we agree by now that there is more to us than just this physical body. If you do not agree on this, read no further….).
So back to what is the point of all this. I think that we have done a universal loop, a 360 degree journey to come to our Source. We have messed up, destroyed, annihilated. We have come to the end of times (I think this is mentioned in the Bible as well….). Where does it leave us though? I think it is a call to return to our true Humanity. To grow down ( we have tried growing up, see where that got us…), to let our roots grow deeper and deeper into the Earth, to find our energy Source in our Connectedness to the Earth, our roots.
In my years of working with Elders I have become so aware of how we have tried everything in our power to “protect” ourselves against nature – umbrellas, rain coats, sun screen. When last did you get soaked in a hefty downpour of rain? When last did you feel the mud peel through your toes? When last did you dive into the icy waters of a Cape Town beach, smelled the earth, felt the soil against your skin as you dig into it with your bare hands? Walking in Italy on a summer’s evening the smell of fig trees, the full moon, the stars above all are part of this Knowing that we belong, that we are connected, that we are part of something much bigger than just this reality. But it needs us to reach out, to go out, to explore, to inhale, to feel, to smell, to touch. It is right there within our reach. If only we would stop for a little while, take the time to reflect…I am sure Nature will call us to action. It will enable us to see our Significance, that fact that we indeed are the manifestation of All.
Can it be that our problem is a spiritual one? That we are no longer connected as individuals to the Earth and its ecological system, that we have dumbed down our Selves to think that we are in control? That our concept of “Development” has actually become one of total destruction? That our lack of “Awareness” is as a result of our insistence that we are in charge of nature. Has it finally caught up with us? We are supposed to be the ones on the planet who THINK, we are supposedly rational, we can make informed decisions. Again, then why are we not doing that? Why are not more concerned with our destroying of our planet? Why does it take an 11 year old girl to wake us up? I find this seriously intriguing. I find it more intriguing that I still do not see that this waking up has moved us to serious action.
I find exactly the same complacency in the world of ageing. We see how older people are treated, we know that what is happening is wrong, we would not wish this on our worst enemy, and yet we sit back and accept it. We are told that we are all on our way there, some of us feel the heat of the fire as we get nearer the coal face of our own ageing and our bodies start telling us the time. Yet, we do not act. Maybe we are just meant to slip quietly into our dotage, complacently accepting our fate of becoming “frail en feeble”. Somehow, this is not a very attractive proposition for me. I have seen the worst. I have watched too many living dead people hanging over the arm rests of wheelchairs, drooling, drugged, spaced out, smelling of urine. Just as much as I do not think our future should be one where we have destroyed all our natural resources, I do not think our personal future should be one of steady physical and cognitive decline. Magnificent creatures that we are, intricate and complex and miraculous in our thinking and Being, incredible in the way that our bodies operate, creators of great art and music, writers of literature, architects and farmers of the soil, there must be more to this life than to simply let it slip from our fingers. It is our duty to rediscover our Essence, to reconnect with who we are, and to start a different journey towards Oneness. To see deeper, to feel endless empathy, to live with respect and kindness, to reach out and to touch, to be touched by the beauty of this Creation. It is time. Ten years will pass in the blink of an eye.
Rayne Stroebel

Imagine…

How do we nurture our Selves? What do we do to feel fulfilled, to feel nurtured, to have a sense of Belonging, Connectedness, Meaning? To feel that we are Growing, Joyful Beings, Secure and Autonomous in our Selves? Especially the Autonomy of Being, to feel that you are indeed the master of your own ship, that your wellbeing is internally controlled, that you are free from the manipulation of others. Is it even possible to break free from the internal dialogue that stems from our earliest childhood messages, especially the negative ones? How many of us go through life thinking that we are indeed “good enough”?

Earlier I wrote about detachment and disconnection. It would seem that many of us spend our lives trying to detach ourselves from the early childhood traumas of bullying and unintentional parental harm, the ignorance of teachers who tried to fit us all into one box, the societies that did not know how to deal with anyone who did not fit the ‘norm’. These messages are so deeply entrenched that they in fact often rule our every move – the way we connect with others (or not), the way that we present ourselves, the way we interpret everything that comes our way. It is often the filter that colours the way that we see the world, and the way in which we interact with the world.

As we grow older, these very filters are the ones that bring about an existential fatigue. We become tired of walking into the same walls or dead ends, making the same mistakes, falling into the same traps over and over again. It is only through in-depth therapeutic work that we begin to understand these neurological pathways and see the way in which they direct our Being-in-the-world. The more we explore our inner world, the more we begin to see patterns of behaviour and understand their origins. Yet, this is often only the beginning of our inner journey. The real work starts when we can create new patterns, new neurological pathways that will determine a new way of Being-in-the world. This is when our real journey starts in Life, when we begin to feel and see new ways, new connections, new experiences. For many of us, the privelege comes only with old(er) age. For me this journey started at the age of 50.

I have just celebrated my 54 birthday in beautiful Vienna. Unplanned, I realised that I also celebrated my 20th birthday there in 1985. If feels like a lifetime away. I think back of the person I was then – confused, hurt, angry, uninformed, unformed, overwhelmed by an existential angst, fuelled by a homicidal rage against the world. Somehow, I could not imagine that my life would amount to anything much. I was truly lost. Somehow, Life took me on this most remarkable journey of discovery. First, 25 years of unlearning, undoing the damage of a childhood spent within a context that just did not know what to do with me. From 45 to 50 I was in limbo, trying to make sense of a career and forever refusing to grow up. And then I turned 50. Glorious 50! Suddenly it all started coming together, I started to see the wood for the trees, to see beyond my own limitations and to be aware of my own sense of Connectedness. It was while walking the Caminho in Portugal that I came unto my Self and for the first time felt a true sense of perspective on this thing called Life, and the Divine Connection that all Life on earth and beyond holds.

It was also here that I learned that this discovery is indeed a part of the development of the older brain – from 50 to 55 we develop certain new neurological pathways that give us the ability to look inward, to truly discover our Selves, to see the bigger picture and to do self-reflection. We begin to see a clearer picture of our Selves within the greater scheme of things. We are given the opportunity to detach from the patterns that dictated us in our earlier years, and we can “losen up”, get rid of these patterns and discover a new sense of Self, one that we can co-construct with the Universe. We are now at the age where, if we allow ourselves to be in tune with the Greater Good of the Universe, we are breathed into Being, intricately Connected and guided. With this comes a whole new way of expressing our Selves. We now have the opportunity to develop insight, empathy, kindness, even if only towards our own Selves. We somehow can stop beating ourselves up.

For many of us it is as if we start seeing the maginificence of Life for the first time. We are open to new people, new experiences, a renewed sense of wonderment. (I remember a BBC innterview with Winnie Mandela a few years ago. The interviewer asked her about Stompie and the dark period of her life after she got divorced from Nelson Mandela. He siad to her that he could see that she has changed, and asked her what brought about this serene change in her. She smiled beautifully, looked him straight in the eyes and said “I became a Grandmother”). With old age often comes a softness, a gentleness. Of course not everyone embraces this gift, as many had not bothered to get rid of blue prints and destructive patterns in their earlier years. Life offers the gift, but it is for us to embrace it. If the earlier work was not done, it is often impossible to embrace the Gift of Growth in our later years. For many, this is a sad, bitter, lonely path of decline into old age.

What then is this thing called “dementia”? Is it only about disconnection and detachment? Is it a place of suffering and darkness, a special kind of hell? Is it caused purely by the deterioration of the brain, a physiological destruction? Again, I think we need to distinguish between “remembering” and “knowing”. How will we know what the person with dementia knows, what they think, see, feel? Well, we will never know unless we start thinking differently about them as people who are thinking differently. As Dr. Al Power so poignantly says, “we have to change our minds about people whose minds have changed”. Imagine if we constructed a new understanding of people living with ‘dementia’ as Sacred, Spiritual Beings. As people who have left behind their one dimensional stay in this realm, being partly Connected to another Realm that we simple beings cannot yet see. Imagine how we would treat them…we would come to them as our teachers, to simply be in the Presence. We would honour them, revere them, hold them in the highest esteem, gently care for them. Imagine how they would react to this. We would always make sure that they are dressed beautifully, give them the purest and best food, make sure they are never distressed, that there surroundings are calm and serene. What if…

The socially constructed reality that we have created is so different. Tom Kitwood implored us to always show “respect, recognition, trust” in our bestowing of ‘personhood’ upon those living with dementia. Instead we have created the exact opposite. Now that I am growing older myself (yes, I know 54 is hardly OLD) I am beginning to see more and more how wreckless we are, as if we are indeed immortal. It will not happen to us, we are invincible. This is about ‘them’, not about ‘us’. I have always maintained that the only question we need to ask ourselves when thinking about person centered care, or even personhood, is “how would I wish to be..?” IF I end up living with memory loss, how would I wish to be? And yes, please assume that you will know exactly what is happening to you. Sit still for a second. Imagine yourself being diagnoserd with ‘dementia’. Let the thought sink in, feel it. Others will start thinking on your behalf, making decisions about your life, where you will live, what will happen to your house, your pets, your furniture. You will forfeit your identity for that of ‘patient’. As the world withdraws itself from you, with it will go your autonomy, security, connectedness, joy, meaning, growth. Not because of your diagnosis, but because of the way that the world positions you.

Now – ask yourself again, “how would I wish to be?”, and start to prepare yourself. Take the time to look deep within yourself to understand who you really are, what is important to you, what defines you. Start to create new neurological pathways, discover new things, explore new ways of Connecting, of Being. Start living in other dimensions of Consciousness, whatever that might mean to you. Meditate. Listen to music that lifts your Soul to higher levels of Consciousness. Fall into nature. Instead of growing up, start growing down (thank you Nader for this great image). Use the brain’s gift of looking deeper and deeper into your Self, into the maginificence of the Universe. Learn about the stars, seashells, expand your horizons, be daring, be your Self. Make new friends. Start to paint. Write your Story. Create new neurological pathways that will override the inevitable atrophy and leave you in a place of eternal wellbeing. There is so much more to us than our hips, our knees, our bowel movements and our cognitive function of remembering.

On being other-wise

Yesterday a national organisation promoting wellbeing for people living with dementia in South Africa posted an article (reposted from another site) that said: “What it’s like to have dementia: losing friends, talking in circles and a slow descent into darkness. What would you do if you knew you were losing all sense of self?”
I find it very difficult to contain my anger and frustration with the way that even organizations that are supposed to educate the masses perpetuate this line of thinking (or rather NOT thinking), fuelling the fire of hell and damnation, loss of Self, identity, personhood, agency and citizenship for people who are living with cognitive impairment. What is even more frustrating, is that so many people simply could not be bothered to read anything that would educate them to the contrary. WHY do we so readily accept these ideas as fact? WHY do we choose not to even give it a second thought that there is more to dementia than meets the eye? Is it so difficult to see that WE are the ones imposing the suffering on people living with dementia, and not the syndrome? What more do we need to do to bring about some greater empathy, a deeper understanding, a more intense engagement that will make us learn from the people who are the true experts, being the very people living with dementia?
It is not that there is not enough research to the contrary! Pia Kontos alone has published some brilliant work on the topic.
Ethnographic reflections on selfhood, embodiment and Alzheimer’s disease PIA C. KONTOS (a1) DOI: doi.org/10.1017/S0144686X04002375Published online by Cambridge University Press: 18 November 2004 Abstract
“Explicit in the current construction of Alzheimer’s disease is the assumption that memory impairment caused by cognitive deficiencies leads to a steady loss of selfhood. The insistence that selfhood is the exclusive privilege of the sphere of cognition has its origins in the modern western philosophical tradition that separates mind from body, and positions the former as superior to the latter. This dichotomy suggests a fundamental passivity of the body, since it is primarily cognition that is held to be essential to selfhood. In contrast to the assumed erasure of selfhood in Alzheimer’s disease, and challenging the philosophical underpinnings of this assumption, this paper presents the findings of an ethnographic study of selfhood in Alzheimer’s disease in a Canadian long-term care facility. It argues and demonstrates that selfhood persists even with severe dementia, because it is an embodied dimension of human existence. Using a framework of embodiment that integrates the perspectives of Merleau-Ponty and Bourdieu, it is argued that selfhood is characterised by an observable coherence and capacity for improvisation, and sustained at a pre-reflective level by the primordial and socio-cultural significance of the body. The participants in this study interacted meaningfully with the world through their embodied way of ‘being-in-the-world’.”
Dementia Discourse: From Imposed Suffering to Knowing Other-Wise Gail Joyce Mitchell York University Sherry L Dupuis University of Waterloo Pia Kontos Research Scientist Dalla Lana School of Public Health University of Toronto DOI: doi.org/10.11575/jah.v0i2.53220 Keywords: Dementia Discourse, Suffering, Embodied Selfhood, Knowing Other-Wise, Hermeneutics,
Abstract
“The authors revisit the troubling discourse surrounding the diagnosis of dementia. A critique of the predominant words and images in health care literature, public discourse, and policy is considered from multiple angles. The authors link the dominant words and images with a form of inter-relational violence. Contrary images grounded in research and experience offer a different view of what it is like to live with a diagnosis of dementia – a view that is life-affirming and based in relationality and possibility. Concepts of embodied selfhood and knowing other-wise are portrayed as doorways to transforming a discourse of violence toward a discourse of compassion and ethical relating.”
We have fallen into more than a “troubling discourse” in my opinion. Our discourse has indeed become one of violence, and our view that of de-meaning people who are according the article cited above as “knowing other-wise”. Our concrete, linear, flat-earth type of arguments about the Mind is growing to catastrophical heights. It is time to stop, to think, to feel, to explore our Connectedness on different levels. This apocalyptic demography of suffering is our own doing, our own creation. What is the basis of our discomfort around dementia? Maybe fear? Or maybe as Athul Gawande points out it is based on the fact that IF we indeed consider the Self (Soul) of someone living with dementia, we would have to seriously reconsider the way we treat them…we would not ship them off to the “frail care”, we would not stop visiting them, we would not lie to them, chemically restrain them, shut them out from the world. We would have to honour their knowing other-wise…
The images and words associated with dementia that are currently mainstream creates more fear, sometimes almost verging on hate speech! How could we even think of saying that someone is no longer their own Self? Who are they then? “Just” an empty shell? It would seem that this “form of inter-relational violence” is totally acceptable to most people. How do we stop it? I don’t know. What I do know is that when I get over feeling angry and frustrated, I am filled with immense sadness… (Being in Vienna, seeing the show Cabaret, seeing the right-wing political posters, I cannot help but be reminded of Naziism and the way that people spoke about Jewish people. It became the mainstream rhetoric, demeaning, joking, degrading, dehumanising. Popular propaganda at the time swept millions of people up in creating one of the biggest tragedies in our human history.) Millions of people are living with memory loss globally, let us not make ourselves guilty of another genocide, this time one of the Soul.
Let’s think about how we degrade, dehumanise, de-mean people living with dementia. Let’s start to be mindful of our thoughts about “them”, the way that we speak about “them”. The way that we accept the treatment of “them”… It is time to rise up, speak out, and create a new language around people who know other-wise. It is the right thing to do.

Witch women?

Fara in Sabina, the beautiful hills of Italy, a bevy of friendly nuns, yoga, pottery, deep process work, new friends, the freshest Italian food…

I had no idea what to expect from this week, but the above convinced me that even if the workshop was terrible, all the above ingredients would be worth a trip to Italy. The convent is huge, immaculately clean, the nuns smiling always, the little village typical in its quaintness, consisting of an ice cream shop, a pizzeria, a linen shop and a few antique shops. The church and abbey tower above everything, the church bell competing with the loudest rooster that wakes up all life from just after six in the morning.

We are a group of ten. I am the second youngest. America, Britain, Germany, South Africa. Ten unique individuals all eager to explore Eldership, whatever that might mean, or if there even is such a thing try to figure it out. We all know that Eldership is mostly referred to in a discourse of deficits. (Of course we had to laugh at ourselves when the moans and groans started about not sleeping, being constipated after eating too much pasta and white bread, and hearing the creaks and cracks of joints as we did our morning yoga!). It is our mission for the week to go deeper and deeper into the meaning of ageing, into exploring the role that we take, the story that we tell, and the way in which we narrate this story.

Nader and Maddy, our facilitators, beam with a sense of vitality. Maddy with the wild hair (Ed thinks she looks like a wise owl with her grey curly hair pinned up on the sides of her head), Nader serene like Jesus himself with his leather sandals. Maddy guides us to play with clay, be free with it, explore it with our eyes closed. (I am way too much in my head and find that I make bowls – begging bowl, feeding bowl, vessel to contain and hold, coiled bowl that reminds me of my connection to my mother who takes on the shape of an Iris.) One of the lessons I learn is that Eldership is about getting out of our cognitive consencus reality to go deeper and deeper into a dreamland or essence reality. This is exactly where ageing takes us, becoming slower in order to notice more, falling out of our perfect yoga pose to become more aware of getting back in touch with our roots, and growing down – as opposed to growing up.

Eldership is about connection, not only to our own sense of Self, but to the greater sense of All, growing into the Earth, feeding from out Connectedness with every other living thing. It is our time to stand our ground, to become firmly connected. On Wednesday evening we watch a documentary on the burning of witches in medieval times (by the church). I cannot help being aware of being in an Abbey, most probably some were even burned in the square of this Abbey. The patriarchal church eradicated (or at least had a good go at trying to) the Female power, of making it about sorcery, of creating an ugliness in ageing women, misappropriating the words “Crone” and “Hag”. Women were the healers, carried the gift of Knowing, were the midwives, made the brews and threw the bones. For that they were burned and persecuted in the most horrid and barbaric ways. Through the ages we have created the patriarchy and bestowed a senseless power on men, only to see the world deteriorating into deeper and deeper malady.

Surrounded by Anna, Elizabeth, Iris, Maddy and Joyce, I feel the burning energy of the feminine, the bewitching Power of their earthy groundedness. Anna, orignally from Kenya, rises like Mount Kenya throught the mist of her Englishness, radiant blue piercing eyes meeting my gaze with absolute determination. She grows in stature over the week, becoming like a Southeaster wind blowing all the autumn leaves up in the air and across the roofs. Elizabeth, mother of Nader, German in every gesture and lightness of her hair and skin, is the Mother Superior. Her pale demeanour, the string of pearls around her neck, speaks of the love of a Persian man that brought the beautiful Nader into this world. His skin just not pale enough to escape the label of the “other”. And whilst I have my issues with the Bible and christianity, I cannot look at the two of them and not imagine the love that Mary had for Jesus… In our groupwork I am with Anna and Elizabeth, Mount Kenya and Mary Magdalene, both mirroring for me the steadfastness of love and determination that only a woman can portray.

Iris, grey hair curling softly around her ears, framing the finest of feminine features reflecting the soft cottons of her tailored clothes (that she made herself) shines with the softness of the feather that stuck to the window all week. A soft, down feather, white, gently blowing in the wind. She holds her gaze, frowns deeply as she thinks before she speaks her kindness and strength. Her deep connection to her husband Tyron (aka Spider) embodies everything that is quintessentially Wife, Beloved. The tattoo on her chest of a sunbird hovering in its sucking the nectar from a flower is the perfect depiction of her own beauty, a bird in flight.

The universe breathes Maddy into Life, grounds her in our midst, holds our attention with her own deep breathing like the ocean wind catching the waves, fuming into the breeze a lightness contrasted with her Mother Earth foundation. Here is witch, sorceress, magus, magician, ancient warrior, alchemist Joan of Arc. Wild hair that will not be tamed, eyes that see through their lids, breathing the ancient wisdom of the Anima into our clay and our yoga. Her gentle touch is grounding, her body exudes the heat of central earth.

Joyce the liberated Jewess, the pioneer earning to be part of Africa, writing a new script of ethical Being-in-the-world. My immediate attraction to Joyce is about our similarity, our fighting spirit, our need to stand up and be seen and heard, if only to hide our own vulnerability. We express our words while hiding our thoughts, we stand tall while cringing timidly.

Being in the presence of such glorious beauty, such wisdom and power, gentleness and resolve is what encapsulates the essence of Eldership, what breathes life into a world that is broken, what holds the vulnerable, makes strong the weak and integrates the scattered. The softness of steel, the smoothness of spiked rocks on the seashore, the lushness of the desert and the silence of a roaring waterfall – Woman, Mother, Sister, Daughter, Goddess – each and every one of them. One day, when the world will stop and truly see Older Women, Crones, Hags, as the Essence of Eldership, we will see a new birth of growth, wisdom and prosperity for all hu(man)kind.

Farfa in Sabina, Italy

Sitting under the oak trees in the quart yard of the Farfa Abbey, I contemplate consciousness as a cosmic property. In the Cartesian world of material matter, it has become harder and harder for people to imagine their Cosmic Connection. We feel cut off, caught up in a material world (even Madonna sings this..), trapped in scientific facts and a consensus reality where we have to be part of a “norm”. Regardless of what we think or believe, the so-called “evidence of research” predict our reality.
The emptiness that so many people experience not withstanding, it is more and more difficult to imagine a Greater Consciousness that connects us, never mind guides us.
The Cosmic wave is a numerical Ponte and Schäfer. As in quantum physics, the non-material wave that is beyond all of the material matter is the numerical blue print, the perfect ratio, that comes into matter based on this numerical formula. Sounds a bit whacky – well, think about it. There is a Cosmic energy/wave at the core of all material form that connects us the way that for example trees are connected.
If a herd of cows are chased into a new field and there are trees in the field, they will happily start eating the low hanging leaves of the trees. Within minutes, a wave of energy (or whatever you want to call it) is sent across the field, a warning of loss that is registered for miles across the field. All the trees will produce a bitter excretion to their low hanging leaves that will be of distaste to the cows, stopping them from eating the leaves and focussing on grass, as cows should!
Why do we not want to “believe” THIS scientific fact? Too airy fairy? Is it perhaps too frightening for us to contemplate a Divine Consciousness, that it might stop us from killing and destroying if we had to acknowledge the Divine Presence/Quantum Wave that connects all life on earth?
As I have mentioned many times before – in dementia, “consciousness is never affected”. We know this, it is not something that is required of us to BELIEVE. Yet, do we treat people whose minds have changed with the same respect that we treat everyone else? No we don’t. Because somehow we think there is no Consciousness, “they are no linger here”. I want to propose that their is a Higher Consciousness in people living with dementia, that they are more in tune, and that their distress is based on OUR inability to acknowledge, to honour, their state of Being-in-the-world.
This is not a religious belief in the traditional sense of the word. Ponte and Schäfer hold that “The word religious is used in this context in the sense of its etymological roots, in which Re-Ligare means “to reconnect,” or “to be in bond,” or “to re-unite”. As Anniela Jaffé wrote: “Individuation must be understood in religious language as the realization of the ‘godly’ in the human, as the fulfilling of a ‘godly mission’. The conscious experience of life becomes a religious experience, one could just as well say, a mystical experience.”.
The mystical Being of a person living with dementia is our challenge – it is indeed mystical, not for us to define ot qualify or diagnose necessarily, but to hold, to contemplate, to honour.

More on this tomorrow..

Silence

I have written about silence/contemplation/solitude before. Allow me to do so again…
This afternoon I arrived at the Abbey in Farfa for a retreat on Elderliness. We are staying in the Abbey, managed by a group of nuns. Whilst I have my serious issues with the church in the way that it has become, there is a lot of meaning in the way of life that the nuns lead.
The most startling awareness as I got out of the car was the silence. After a weekend in Rome, it felt as if I had suddenly gone deaf! Not a sound. The inside of the cloister is cool and even more quiet. In fact, it is completely and totally silent. Soon my ears start picking up the sounds of nature – pigeons and “sonbesies” (cicadas). Nothing else…The silence required and essential to listening what I am sure the Nuns would call the voice of God. I call it Divine Wisdom.
In our world of technology overload and noise pollution, this silence is eery. (Not to mention my tinnitus…). We are no longer used to absolutely silence. Every moment of our days are filled with noise. Mostly noise!
As we grow older, contemplation and reflection are our greatest gift. It comes naturally, and should be fostered with great care. We no longer need to be constantly entertained or in the presence of noise (also known as entertainment). We can actually be with ourselves easier, relax into our own Presence, and be still. The best way to detox or brains (literally and figuratively speaking) is silent meditation, something that does not come naturally to our Western minds. We need to fill the silence with talking or constant sounds. Silence makes is feel uncomfortable. Yet, it is only in silence that will connect to our inner Knowing.
One day when I am old and maybe forgetful, my greatest need would be quiet solitude. I remember my paternal grandmother sitting alone with curtains drawn in absolute silence. I used to feel sorry for, thinking that it must be awful to be so lonely. Now I understand that so much better, and wish I knew then not to try and cajole her out of her silent contemplation.
Silence is our rewiring, if we can give way to thoughts that distract us. It is like cleaning the desktop of your computer of all the files that are open and slowing things down. It creates space. It opens neurological access for Being, just Being in perfect harmony with nature. Then intuition enters. Synchronicity appears. Wisdom. Knowing.
What if that is what fills the Mind of the person living with memory loss? A new Knowing, a contented understanding, detached from this realm and Divinely connected to Another? What if dementia is a way of detaching ourselves on our passage to something far greater than just this concrete place that we know.
I don’t know, but somehow I find a deeper peace in most people living with memory loss if we stop seeing them as sufferers, feeling obliged to change their behaviour and trying to get them to stay as they were. Perhaps we should start learning from them…

On being old

I am in Rome. It intrigues me how fascinated we are with old things – here in Rome we marvel at a road that dates back to 600BC. (It is incredible really). But in general – old wine, old cars, old trees – we love old things and the stories they tell. The markings on a building, the circles in the wood, the colour of a red wine, the pristine condition of a vintage car.
There is one exception to our love of old things – people. The world sadly does not have the same admiration for old people. Well, at least not unless they can run marathons, jump from planes or do things that most young people find hard to do.
The more I see how marginalized older people are the more it concerns me. Here in Europe at least old people are slightly more visible, mostly because unlike in South Africa it is safe and accessible. I see them walking the streets, sitting at sidewalk cafés and being part of the evening passagio with their families, three or four generations going for an evening stroll.
In a recent podcast the statements was made that the more children spend time with other children and less with their parents and grandparents, the more they will learn their values from their peers. Not good, we all agree. The same goes for us adults – if we see the world only through the eyes of people our own age (never mind own culture and small set of close friends) we create echo chambers that reverberate our own voices louder and louder.
We need to look beyond people our own age to learn about life – the good and the bad. We need to start listening to the stories of other generations, younger and older, to create a more nuanced understanding of the world. For it is through these stories that our inner worlds of understanding will grow and mature, that we will come more and more aware of our connectedness, and that we develop empathy and wisdom.
Our disconnect is taking on alarming proportions. We are too busy. We are becoming more and more self-centered. Life moves too fast and we are not doing enough to slow it down. Looking into the face of a parent – taking the time to sit and look at them, be with them, see the lines on their face and the grey in their hair, seeing your own genetic reflection, gives a sense of being grounded, of history so deep and so profound, it explains the mystery of Life, the wonder of Creation. It validates your Being.
We have so much unfinished business with the generation that came before us. We are angry with them for what they did to the planet, for Apartheid, for messing us up with their Calvinism etc etc. They did their best with what they had and what they knew. Can we say the same about our Selves? Are we doing the best we can with what we know?
I want to spend more time with old people. My soul needs this.