‘Living in relationship with the struggles of life is what makes us human.’ And I would add, what makes us interesting, beautiful in our own way and brings a healing, and a peace of mind. I’d say right now, I’m work in progress. My deepest thanks and love to all of you who support me through .
This blog is about my thoughts on my own experience of breast cancer and becoming disabled, on self care, my passion for improving health and healthcare and about heartful leadership in all areas of life.
Sunday, 3 October 2021
In search of Healing
‘Living in relationship with the struggles of life is what makes us human.’ And I would add, what makes us interesting, beautiful in our own way and brings a healing, and a peace of mind. I’d say right now, I’m work in progress. My deepest thanks and love to all of you who support me through .
Saturday, 18 September 2021
Through the eyes of a child.
York Minster
We should all see the world through the eyes of a three year old. It’s an exciting place full of opportunity and wonder. It’s a world where firing a nerf blaster at your birthday guests can fill the room with all our laughter. But it’s also a world where what you remember most from a trip to York, that took in the Railway Museum and a Viking Centre, are the bells of York Minster. Even at three years of age we know what a rare beauty that is. Our Grandson’s life and vocabulary expands daily and its joyful to watch. He got every kind of vehicle for his birthday, even emergency ones that made their own siren noise! If Eskimos have 50 words for snow, then he has a similar number that make car brrrroom noises. It’s even magical to see him play with toys that were once his father’s, especially super ted whose super powers live in the imagination of the children who have loved him. What an amazing world this is when you live in a nice house, have plenty to eat and money for toys and trips away.
But what of those who don’t? What of the 5.5 million people for example, who stand to lose the £20 so-called uplift of universal credit, with 0.5 million of them plunging into poverty, 200,000 of them are children. Children whose birthdays will be very different to the one we have just celebrated. The government knew the rate of universal credit was too low, hence the recognition that the additional £20 was crucial to avert even more distress during a pandemic. The truth is it was always too low. Food bank use declined when people had enough money to feed themselves.
Hunger queuesAnd this is not a problem of unemployment, 60% of those affected are in work. It’s a problem of poor working conditions and low pay. And it’s a lack support for disabled people - disabled by a world that doesn’t accommodate their needs, for both physical and mental health. Ours is a rich country crippled by staggering inequalities. It is to our collective shame if we allow people to starve while others thrive. The government must integrate the £20 into universal credit. As the recently appointed UN rapporteur on extreme poverty in the UK said it would be ‘unconscionable’ to remove the money that is so evidently needed and ‘incompatible with Britain’s obligation to protect its citizens’ rights to an adequate standard of living’. Strong words and so they should be.
I can’t imagine how it feels to be unable to feed your family. But my grandparents knew that feeling. It’s not so far away really. I don’t know how politicians, knowing the impact of removing the £20, can even think to enact it. I don’t know how they could look their own children in the eye and say we deliberately made children starve. How could they even sleep at night?
How can we if we do nothing?
Saturday, 11 September 2021
Walking each other home?
I used to have a list of places I really wanted to visit.Like the Himalaya, Canada and the Rockies, and I would also dream of returning to Orkney, France, Italy, Switzerland, to our balcony looking at the Rila mountains and so on and so on. Perhaps the whole family could tour together and then take a villa to reflect and recover. I was rarely short of ideas, more commonly just short of cash! And I would of course be walking in the hills, through wildflowers and diving into cool wild waters to be refreshed until the sun dipped and we were also cool enough to eat. In those times I was unencumbered by pain, disability and fatigue. My body was symmetrical at lease, more rounded than I was ever happy with but didn’t let me down too often. Did I take these times for granted? Perhaps but I always felt gratitude that my life had allowed me to explore more of the world than my parents generation did. And I didn’t expect it to change as soon as it did. I’m from the baby boomer generation who thought things would get even better for our children.
What did we know? I have a Masters in Public Health so maybe I should have been more open to possibility of the pandemic in our lifetime but no, I ignored that like so many other warnings our generation ignored.
When the virus spread its deadly path accross the globe I was fascinated, reading everything i could to understand its impact on us. And then the fear crept in. It tilted my equilibrium until it was hard to hold on to my own well worn coping strategies. I had many many dreams about working as a nurse in a dystopian world that was no longer predictable. And then I would realise that I was in my wheelchair…..
The strange thing is, I didn’t even waken then. I know there is part of me still waiting to wake up.
But if it hadn’t been real what wisdom would now be lost? That introverts didn’t mind lockdown? Or that people would feel the need to hoard loo roll in some distorted relationship with poo? That people would start the pandemic applauding the healthcare teams but then get angry with them for not making it all go away. Maybe we would never realise that there is another way to organise work, at least for some or know that there would come a time when we would yearn to see our families, even the ones that usually drove us crazy. Would we understand fully the difference touch makes and that a hug from a loved one would trigger such depth of emotions? Would we realise that the pandemic induced combination of serious illness, fear, loss, separation and loneliness would create a tsunami of mental health issues that we are totally ill equipped to respond to. A public mental health crisis affecting all age groups was previously unknown. A medical model of addressing mental health in an individual is powerless in the face of societal change and deep seated inequalities. It’s overwhelming and part of me wants to hide away again, hide from the broken and powerless, in a world of Netflix and books, grasping on to such low expectations it’s impossible to be disappointed. But hiding takes energy, energy I want to use differently. And hiding from reality doesn’t facilitate good health.
I know I’m not alone in my mental health challenges and yet I’ve struggled to be open about them. I’ve found writing hard, meditation equally so. Working however has been a solace, an investment in the outside world and a way to help others. But there is risk in work being the answer, some of it maybe- but not all. So I’m redirecting my sails to find a better way through this coming storm, however it manifests.
My middle name is Love ( a surname from the past ). I’ve always been a bit embarrassed by it because of the teasing it triggered as a child. As I’m just a few months away from collecting my pension and I think now I need to fully embrace the gift of my middle name. So from now on you can call me……..No!.. not love, just Audrey or even Auds as some of my family do. And I instead will give thanks for the reminder of the central role that love needs to play in my (our) life. I know we can’t really love until we love ourselves and that’s life’s journey. In a pivotal point of this pandemic I am looking back and forward to remind myself in this moment of what a precious journey life is.
Saturday, 14 August 2021
Are you awake?
It’s August already, the second year of the COVID-19 pandemic. Who would have predicted these recent times. These times of isolation, fear, uncertainty and our lives changed for ever. A time that will divide the past from the future. Much of our restrictions in Scotland are now lifted but it would hard to describe it as normal. And what does that mean, that word, normal? Is it simply that good or bad, it’s familiar, a predictable rhythm over the year? Or is it that it doesn’t trigger a stress reaction anymore and however grim, it’s the new reality and we recognise it. So much so that many of us reach quickly for a mask or resist busy places and avoid public transport. The trajectory of normal has shifted again and we look to the winter with suspicion.
Having lived through four cancer diagnosis and one of a benign spinal growth leading to severe pain and disability, I absolutely recognise the resilience of human beings and how we can adjust to the previously unthinkable. It does have an impact but we tend to keep going in the face of even life changing impacts. It’s a deep yearning for survival, even one with a future so different. We are reminded of life’s preciousness alongside recognising the vulnerability of what we once never questioned.
Many of the stages of diagnosis, treatment and recovery during the pandemic has reminded me of cancer diagnoses and their impact. What I had previously experienced as an individual was now visible across populations. Denial, shock, fear, relief, anger- on repeat- for so many of us. The long term sequele are not simply physical but also emotional and social. There is so much evidence that surviving a diagnosis like cancer does not stop being impactful with a clear scan or a course of radiotherapy. And looking at the impact of COVID-19 we see widespread mental health issues, as well as the short and long COVID effects on physical health and social circumstance. From my experience the full impact doesn’t affect me until the crisis passes. So the timing is not even logical, just as it passes I find the reality almost overwhelming.
I have spoken before about turning to Maggies, the charity for people affected by cancer, after being treated for cancer. This has taught me the value of being with peers and built my self care through meditation and writing for example. So many charities offer support related to cancer but could any of their models be scaled up to population levels realistically? For a post pandemic population made sick by the pandemic and its management and isolation we will need societal responses. Striving for income equality, affordable homes and access to real food seems to me to be part of this. As developing self compassion, immune system support, a more nutritious diet, listening without judgment, practicing gratitude, building on social connections and communities will all need to be part of our recovery.
And with skilled leadership and a shared dream this is possible. Communities, organisations, schools, universities, public bodies will all need to play a part in a shared vision for a healthy future. It’s so important that we don’t miss this awakening in our society of the need for change that of course didn’t only start with the pandemic. If we carry on as before we have an unhealthy population struggling with a challenging future. To do something needs wise and courageous leadership at community, local and national level and a population hungry for change that’s very different from our current offer. Each of us must accept that we too can make a difference, one person,one community at a times and in time our leaders will follow.
After all what are we waiting for; for things to be normal, because honestly they won’t be. The sooner we get that, the better. And that’s not even factoring in climate change……a whole other epoch changing factor. Are we all awake yet????
Saturday, 24 July 2021
When summer hurts.
When Summer Hurts
Summer hurts
Not sunburn
No, it’s heart burn
Heartsore, heart broken.
A summer of loss
A path untravelled
A climb unreached
A beach untrodden
A Loch unexplored.
Images abound of this glorious time
from Scotland shimmering in the sun
the beauty catches the breath,
attracting wild swimmers and
free walkers taking in this marvellous land.
Searchers for a different world.
I long for these images
each one invites me
a vicarious traveller
yearning to share it.
And still the loss digs into my soul.
I rail against my body.
I resent I can no longer trail
sandals in hand along those empty beaches
or walk the softly shaded woods,
they can no longer soothe my spirit.
Spontaneity of summer
sucked dry with endless planning and
no access stumbles.
How can a simple trip
be so very arduous?
I don’t want your sympathy!
I want a world that invites me in,
that includes me, clumsy, in pain.
Not this one that makes it too easy to stay home,
no longer an embarrassing reminder
to a world where only
the well or able are needed or wanted.
These days I struggle to climb steps.
Trapped in or out of this home
that’s kept me safe from our virus laiden land
and incompetent government.
Crossing a threshold I clutch my anxiety
wrapped in pain and grief.
Desperate to escape, desperate to hide.
One woman’s freedom, another’s prison.
Leave me alone.
Don’t leave me behind.
A paradox of need,
a push pull of relationships.
I need to speak to this loss
it’s as real as the cussedness
that fuels me day after day.
So summer please
Make room for us.
Those who are unwell,
Who mourn a life, a future, a past.
Those who have lost their love,
their profession, their health.
We too crave the suns warmth,
we long to make memories
to lose anxiety and find peace.
We want to find the hope
in the summer light and feel it’s joy.
Let’s us in too, please-summer.
Wednesday, 30 June 2021
Summer in Scotland
In Shetland it’s the simmer dim
a name that shimmers
like the light that hovers
between not yet dark
and not yet light.
Summer edging forward,
vibrant colours
fill our skies
sunsets of fire,
never tire.
Scottish summers,
not about heat.
But about abundance
of stunning views
of soft whispering breezes.
It’s the machair
defining the boundary
of beach and sea.
Birds call a welcome,
gulls riding the currents.
I miss walking
our velvet paths
nothing to mind
but the passing of time
and the indulgence of the season.
I miss walking.
Saturday, 12 June 2021
Socially secure?
Charley Macksey
If I had worry beads, they would be down to the string just now. It’s not been an easy first half of the year. And I’m going to say straight away, I also know I’m very fortunate. I have so much that others start each day worrying about keeping. I don’t have to worry about finding a home or a job or even social isolation. But what we have had in the close family is a series of ill health, a horribly broken wrist and most recently covid has affected my grandson and his Mum and Dad. Thankfully we are on recovery paths now but it’s shaken us and also because it’s not been me who has been unwell for a change! Don’t get me wrong, I’ve a whole lot going on as ever but nothing unexpected or acute.
We humans are amazingly flexible and resilient but we are also vulnerable. Not only can our bodies let us down but so can our society. During lockdown we have seen so many people lose their jobs. This is not only about income but also about how we see ourselves and often our self esteem. It is estimated that one in three of us is only two pay days away from homelessness. In the US and England it’s one pay day. That’s how quickly our fortunes can change. And what was once a social security system in the UK is now a benefit system. We are not socially secure when things happen. Be it illness, unemployment, retirement or relationship breakdowns; our worlds are rocked and our income so affected to be life changing. So many are not secure and foodbanks have only appeared and grown exponentially since the benefit changes, in particular universal credit. This is to our shame as a society and has a huge impact on our economy too.
I really welcome the exploration of minimum income guarantee and universal basic income. We need more compassion in the system. And if voting behaviour is a sign, most people voted for quite fundamental change in society even setting aside the constitutional debate.
A National Care Service is one of them. Without a real concept of what that is, we know we need to see substantial improvement in our social care service. My generation has grown up with the NHS and for many they don’t understand where that ends and social care begins-until it affects them and their family. My husband is now my main carer. Friends and family do help when they can but in daily reality, it’s him. And recently he’s been unwell. I’ve felt guilty for my need and he’s felt overwhelmed too. We have got through but it’s left that residual worry. What would happen if…the if unsaid.
But the other day he raised ‘what would happen to you if I wasn’t here’. My first thought was he’s decided to run away! Who could blame him-second thought. Then reality settled on, he is thinking what if I died. Even to write that down triggers such anxiety and loss. My answer was I would pay as much as I could afford for care and get by. My inside thoughts were much more alarming. I would have more pain and anxiety. I would eat less well, I would be less well and I’d struggle to get out. I’d be unable to care for my dog without good support which would also be expensive. I’d be unable to work much at all unless it was all online. I would do what most disabled and frail people do; live a life compromised by a very poor or very expensive social care system.
So my reality is I want a national care service for us all, that we invest in through a national form of insurance. I don’t want my husband to be exhausted, afraid to be ill and afraid to die, because life has dealt us some tough hands. I don’t want to feel afraid of my future, I want to be able to live my best life now. It shouldn’t be too much to hope for, should it?
For Audrey, with love
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