A change of age unfolds....1000 women find their voice.

“Never underestimate the power of a small group of committed people to change the world. In fact, it is the only thing that ever has.” Margaret Mead

 

Elaine C Smith in Perth Women for Independence Event

I came to blogging through my experience of breast cancer while working as a Director for Scotland of Breakthrough Breast Cancer. I set up the organisation in Scotland for Breakthrough and as I had been diagnosed with breast cancer in my thirties and knew for all the change in attitudes towards breast cancer, there was still much to do. When I started in that role I was aware of the power of the breast cancer sisterhood. The shared stories that connected us, the warmth of that bond, the empathy that meant words need not always be spoken to be heard. The power is immense, it's a special kind of healing that emerges as a consequence. When I was diagnosed a second time when I was with Breakthrough I knew secrecy was impossible and that perhaps sharing my story would help others, having the unique platform that I did. And so my blogging journey began. Since then I have plotted surgery , recovery, loss and renewal, I have advocated for change in health and social care, in leadership and in society. More recently too I have even touched on the referendum in Scotland. I have always been a political animal but for the first time in my life I became politically active.

The referendum now has passed, the result was 55% voted to stay as part of the UK so game over and back to how things were ( aside from more devolution on the table of course!).But since this weekend I'm quite sure that will not happen.

We are living in a change of age here in Scotland and I am still making sense of it all, in my life and in my work too.

On Saturday I went to an event where 1000 women gathered as Women for Independence and for Independence for Women too. I witnessed a social movement, a women's movement  unfold and its awe inspiring. The speakers were excellent but the real stars were the women who got up at the open mic session and told their stories. Some were miraculous stories of conversion to YES for independence but perhaps what was most moving were their stories of finding their voice in that process. As someone described it...no one had asked what I thought before. In a process where very vote counted; every voice counted. Many of those voices had never been heard before; no one had listened. One woman described until recently she had been agoraphobic but the through process of her political  and social awakening she not only found her voice, she found her courage too. Her depression lifted as a result and she was able to re-engage with the world. The cheers from all collected said it all.

We were asked our opinions and we gave them with the peer group who organised the event giving commitment that the approach would maintain inclusiveness at its core, that people would be encouraged to self organise as had happened naturally till then. Indeed new groups have sprung up since the referendum and many of those there, had become active since-not before the vote. It's an organic movement enfolding day by day and no one knows what will happen next. The women were clear that this would be a movement that reached out to all women and that they wanted to learn how best to effect change.

I have no doubt this is a social movement as well as a political movement. It's not only the new politics, it's the new world we live and work in. We are still trying to respond to it through existing paradigms and that won't work. Traditional political parties look on with awe and the recent party conferences have seemed strangely out of step. The smart money is on those who will inspire, motivate and enable the community of support with a shared passion and cause.

As someone who has studied public health I was interested to learn that the messages particularly around the gap between rich and poor seemed to be the ones that influenced the vote especially in the last few weeks. It seems that economic and health inequalities are important in this social movement.  The call for a fairer and more equal society is not going away. And what I experienced was a sense of community, an "all of us first" mindset as described by " The Common Weal"

It's not only women of course who are part of this movement and call for change. And indeed it's not only in Scotland. Social media is a powerful tool in this and blogging a key part. As a breast  cancer blogger I'm part of a global network ( see Journey Beyond Breast Cancer) and have made connections across many boundaries. This has enriched my life, connected me in very meaningful ways and I have learned from so many others.  Blogging is only one way to find your voice of course but whats even more important is that we listen to those voices, especially the ones so rarely heard. That's where the transformations in our lives and work will be seeded.

On Saturday I expanded my sisterhood beyond those with breast cancer to an amazing collective of women who want to see a better society. I was so very energised by it and moved to be part of that. Now I'm absolutely keen to be part of  building local networks too.  You can't unlearn what you have learned and recently I have been reminded that we all have the potential to make a difference and together that power is exponentially increased. We are indeed off our sofas now and we are definitely not going back. Watch this space.....

You got a friend this October?

 

Join the Breakthrough Bake Off, Im with dog here!

I've been planning my week ahead and knew that its coming; breast cancer awareness month that is. No longer do I have to dress in pink, to go about my work but nonetheless the reality is that October is still very pink. My careful packaging away of my own history, to be pulled out when I approach my review appointment in December, is no longer intact.

It's insidious at first; some articles appear in women's magazines. Stories of survival abound. The ones who don't are less spoken of this month it seems. There are the others too of course, who wouldn't describe themselves as survivors, living with metastatic cancer who can feel  in the shadow of the pink hued October time. But for many of them their daily life has become survival, their personal marathons to live with pain, fatigue and more. Somehow that pink ribbon just doesn't really seem cut it for them.

Of course breast awareness is important and I'm grateful for that focus and hope this month too will save lives through early diagnosis. Also the breast cancer charities rely on this month to raise much needed income to do their research, support and information, all of which help. So do what you can, it makes a difference. And share this TLC message to friends too; we all need to be breast aware.

But don't forget the impact on your friends with breast cancer, don't think that it's gone now they are back to work, or had good news at a follow up. And even more important are those friends who don't get the good news, who live everyday with metastatic cancer, please make sure they don't disappear into your shadows. Be their friend still.

I saw James Taylor this week in Glasgow and he was wonderful.His hair may different from the poster I lovingly gazed at on my bedroom wall as a teenager but his voice is still beautiful. As he sang You Got a Friend I remembered the time after my first diagnosis of breast cancer, watching him sing this song on a TV programme with the tears rolling down my cheeks, knowing that that message was so important to me and mine then. To know you've got a friend means so much.

Look after your friends this month....and all the other ones too of course. 

Generous in love?

If there has been a theme for this week, it would be love. It started and ended for me with discussions on how to improve care and support for those in need of health and social care. And trying to capture what is the essence of creating a quality approach. Now I could talk of asset based, person-centred, responsive, flexible, respectful, partnership based but those kind of words roll of the tongue and don't always connect us with our humanity.

We collect those words to get closer to that seemingly indefinable essence of what enables wellbeing and change in relationship with others. We wonder if its ok to provide comfort in the moment with a hug, to describe someone we care for in terms of friendship, to put another's needs before our own, even if we're not related because someone has told us its unprofessional.

 And yet we know in our own hearts that we want those who care for and support us to meet us as people, as equals and not hidden behind the shield of a title or indeed a uniform. But as themselves in all their imperfections and in that moment of contact willing to meet us as people, not conditions, not problems but in all of our humanity.  As I have explored what enables that in so much of my work this week, I have come to believe that it's about releasing people's capacity to love, in all of its senses.

Of course love exists not only between individuals or in families but in communities too.

I saw it today as people carried bags of groceries down the Royal Mile in Edinburgh ( the tourists must have wondered what was happening!) to collect and disseminate to local food banks. Oh how I wish I didn't live in a country where wealth is so poorly distributed we need food banks to correct the balance. But I'm glad nonetheless to see so many show care for others in communities all over the country. That gives me hope for better things.

So what's love go to do with it? Just about everything I think, don't you?

A new life at its term?

Proudly holding my Women for Independence Mug and stroking Cara.

What a few days this has been in my homeland. As most of you will know, I supported Yes for a chance to create a better form of social justice in our land, in particular one that ensured every voice counted. Well time will tell what the promise of new powers will deliver and if that will ensure we can build a more just and equal society. But we have shone a light on democracy and illustrated that social movements can emerge and create change. 
Recently a friend said that social movements rarely create the thing they set out to do but they do create change. Let's hope so. I have loved being part of this social movement and I will continue to do all I can for more socially just, equal and importantly to me, heartful community in all my life and work. I'm especially fortunate to have the opportunity to do that. It's been an honour to meet so many  passionate people dedicated to improving things for everyone. It gives me such hope for the future. I was one of the 45% as the movement is describing itself, but I feel no need to define myself as that. I would rather work into the future, for the wellbeing of all in our communities and our nation, however they want to define that.

For now I will dry my tears and plan how I can align all my life and work to work toward what I believe in. I will keep you posted! Thanks so much to all of you in Scotland who have got us to this next step, the work continues, there is so much to be proud of and I'm so honoured to have been part of the journey.
 I leave you with the very wonderful Seamus Heaney. A friend reminded me of his quote about poetry and music being food for the soul. As poetry, music and song have been a key part of this very wonderful social movement, this feels right.

Human beings suffer,

They torture one another,

They get hurt and get hard.

No poem or play or song

Can fully right a wrong

Inflicted and endured.

The innocent in gaols

Beat on their bars together.

A hunger-striker's father

Stands in the graveyard dumb.

The police widow in veils

Faints at the funeral home.

History says, don't hope

On this side of the grave.

But then, once in a lifetime

The longed-for tidal wave

Of justice can rise up,

And hope and history rhyme.

So hope for a great sea-change

On the far side of revenge.

Believe that further shore

Is reachable from here.

Believe in miracle

And cures and healing wells.

Call miracle self-healing:

The utter, self-revealing

Double-take of feeling.

If there's fire on the mountain

Or lightning and storm

And a god speaks from the sky

That means someone is hearing

The outcry and the birth-cry

Of new life at its term.” 

― Seamus Heaney

Burdens or assets?

Recently I had a reunion with my fellow nursing students from the University of Edinburgh. It was a fabulous weekend connecting with people who were such an important part of my life at one stage. Some have stayed in it of course but how special it was to meet again  and look back at our younger selves as so many memories were awakened. 
How did we feel the course had affected our lives, we wondered? I recalled that a former student had told us, the degree in nursing gave her skills for life. I remember thinking with a youthful arrogance, really, is that all?Of course it was nt all but now I know what a fundamental gift that was. Our Professor was the unique Professor Annie Altschul. She was a mental health nurse by background, an Austrian who had left her homeland when fascism was plowing its devastating furrow. Her special research interest was the therapeutic relationship. We recalled her words to us: that the best tool we had as nurses, was ourselves. An overwhelming thought when you are a raw 18 year old, but now I recognise the deep wisdom she spoke.
Not only are we older, greyer and our lives have had some unpredicted twists and turns but the world we work in too is different. The people we care for now have complex illness, they tend to be older and usually have more than one condition to deal with. In some respects that is a success story as we live longer now, but the reality too is that we live longer with long term conditions.
Its hard to hear this spoken of in healthcare without words like burden and wait for it; multimorbidity  being used. I have been known to introduce myself at such events, as Audrey a walking multi morbidity! Yes it's a joke but its also my way of reminding us that we are people, not burdens, not the blame for pressure on the health system, we are the reason the system exists. I absolutely understand the challenge of caring for people with complex conditions, the primary care system is buckling with that pressure. But we know our medical and nursing education  does not currently prepare people for the reality they face. Undoubtedly we need to change our approach to a person centred one, with people not conditions or systems of the body the focus. An assets based approach where we help people discover their resources to enable their own wellbeing, whatever their health issues. Where we focus on fostering self belief and self management, enabled, not disabled, by our health and care needs. Where health and care workers recognise their role is to enable wellbeing not merely to treat disease or support people safely. And they too as staff are valued, supported and stimulated in their work. A culture that starts with "what matters to you?" is the one which will create the conditions for wellbeing in our selves and our communities. 
The young nurses setting out on their journey as I did so many years ago, will see a health system very different to the one I did. In very many ways it will be better but also wakening up to the fact it needs to change. We need to respond to that call and give those professionals the right tools and conditions to do that. Language is so important so let's stop talking burden and start talking assets, it will start to turn the wheel in the right direction and give us all the starting point for change.
Reasons to be cheerful.
I'm working with a great organisation who have embraced the future with a very personalised form of support. I spent time with the manager, who told me, "since I started this project, I haven't worked a day". A team who love their work because they see the difference it makes. Now that's a great starting point too.