Always look on the bright side of life….I tried,honestly!

 I decided yesterday to write a blog on what has been the impact of becoming a disabled person in an ableist world. And the truth is sometimes I forget how much I have had to give up, adapt, accept and buy to keep going in a positive way. Why positive, you may ask? Because I can’t live my life focussed on negatives as that takes a brutal toll on my mental health. I know this as I was stuck in that place earlier this year, with an internal black dog facing constant pain and an external context of evident climate crisis and a pandemic still being measured by excess deaths. I’m fortunate in that I have an internal reset button that helps me feel so grateful for the wonderful people I have in my life and the stability of an income that enables me to buy things that make me more comfortable. And to survive well, quite frankly, you need both. 

This week I’ve just bought two mobility scooters! I started on my journey with mobility scooters just before my spinal operation in June 2018. I was so grateful to feel again a sense of independence and the wind in my hair as I could enjoy ‘walking’ with family and friends. But the battery went quickly on this second hand scooter and recently the one I replaced it with kept stopping after any bump and leaving me vulnerable and abandoned. 

I learn constantly what I need and so far there is no one scooter that does it all. I need one that I can get around locally in Edinburgh, which protects my unstable spine but also one that I can get in a car so if I need to go further afield I have a device that allows me to move around once I arrive. A painful and inflamed wrist means I have huge difficulty with manual wheelchairs. Hence I grasped part of my savings for a rainy day ( accepting that this is a deluge) and bought the devices I hope will see me through for some time. 

I moved back to Edinburgh more than ten years ago and before any diagnosis of spinal damage. 

In part because Edinburgh has an excellent bus network that is used by all sectors of society. Our plan was to be able to reduce our reliance on a car, little knowing that our dependence on cars was to increase dramatically in just a few years. Mobility scooters are currently not allowed on buses in Lothian and in most parts of the UK. Future designs of buses will look at this issue we are told but that will not be for some time. Yet another example of being disabled by the world around me but frankly the tip of the iceberg. 

When it comes to meeting needs for disabled people, it’s never top priority. And yes, you are right even when ( DDA 1995 followed by Equality Act 2010) laws are passed, on so many occasions the law is broken without redress and people’s lives are reduced as a result. And yet again people like me feel less valuable, hidden away by societal structures and mores that assume it’s OK to exclude and be ‘othered’ by the able who assume ( wrongly) that it wont be them sometime. 

I bought my bigger scooter to negotiate pavements that are not designed for the frail and those with impaired mobility. Dropped pavements where they exist are also rarely properly designed so negotiating a trip in an urban area is usually full of frustration, pain and resignation around what can’t be done. 

But I took the new scooter out yesterday full of hope of smoother trips and I wasn’t disappointed-until trying to negotiate shops and cafes. Many I just can’t get in at all and/or have doors that can’t be negotiated to open and those I can get in are blighted by floor clutter, especially as we approach Christmas. Anyone with sight impairment or requiring a mobility aid is doubly disabled. Almost without exception every person I encounter is kind and tries their best to help and mutters apologies endlessly as they help me negotiate safer paths or provide a personal service at the door. So for all the many good folk who ask how they can help, I salute you!! But it’s the example again of how much as a society we put profit before people.

 It’s said we can get the true measure of a society by how it treats its most vulnerable. Frankly as a society the UK will not be be judged well in how it serves its most vulnerable citizens. And what I have described today is a tiny part of a whole that leaves each day a challenge that with different priorities and attitudes could be very different. 

Right I’ve said it….off to negotiate another day and as my sister-in-law would say “Always look on the bright side of life” …….

In search of Healing

Difference Between Healing and Curing

                                                                             

I read this article today and it really resonated for me. It’s perhaps because I’ve been stuck recently. Stuck in the sense that a flare up in pain had stopped me sleeping and that in turn had tipped my equilibrium. I was buried by my many health issues, trying to find an escape route. Sleep loss and feeling low meant that I forgot about ways to escape and mostly put my hopes in medication to re-establish some balance for me. Anyone living with chronic pain knows it’s much more complex than that. I know that how we react to and interact with pain is complex and yet I was clinging to the myth of the magic bullet to fix me.

And perhaps worst of all I’d lost my joy in life. 

Reaching out for support recently has really helped me re calibrate. I now can see again what makes life special and I’m being kinder to myself. But as with anyone who lives with cancer knows, we have had to let go of certainty about our health. In truth that certainty for anyone is a myth, but having a diagnosis of cancer means the worry never goes. Of course it waxes and wanes but recently it’s been to the fore for me. Worry feeds worries and I realised that I had set that hare running too. It’s exhausting! I’ve learned over many years to manage the balance between legitimate vigilance ( I do have the BRCA2 gêne after all) and losing peace of mind, worrying about every little thing. But inevitably I don’t always find the sweet spot between the two. Who could? 

The article above explores what healing is and while I don’t necessarily think that serious illness leads to huge epiphanies or that wisdom follows life changing surgery or chemotherapy; I have noticed that I experience life in glorious colour and feel deep gratitude for who and what make my fragile life special. ‘Healing is the most fundamental aspect of our condition, and it's a continuous rediscovery of what it means to be alive………..It is about living with the ongoing stresses and strains and difficulties -- and joys -- of life, but doing so in a way that we feel whole.’ It’s not numbing feelings, it’s putting an arm around then and accepting them as part of you. For me, that’s oh so easy to say but years of denying my fatigue has made me skilled at ignoring feelings and pushing through. It was the only way I knew how. I’m grateful I have learned to do it differently now and showing myself compassion is something more recent and so very welcome. Allowing myself to be seen, scars and all is work in progress. But if I look at who I’m most drawn to in life, it is the people who are comfortable with all of who they are and they don’t hide or feel shame if life is challenging. That self knowledge takes time and won’t ever be perfect but that’s ok too. 

Thé final Line in the article says : 

‘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 .

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 queues

And 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?

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.

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????

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. 

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.