Sunday, 23 September 2018

To see ourselves as ithers see us: Blue badge Blues 11


This week we have been watching The Crown...Yes I know!  I’m no royalist and probably a republican at heart but we had a few recommendations of it as interesting drama. It’s only one perspective of course and they skip over theories that the abdicating king was also a risk because of his fascist friends for example- but its interesting. The last one I watched was when Winston Churchill retired and he saw his portrait that had been commissioned. An honest portrayal of his frailty was too much for him.
In that moment I saw myself as well. A mirror of my own shock at my frailty. I seem to possess an ability to lock some of that reaction in a cupboard, only to be taken out on safe occasions. I keep going, taking comfort in minor achievements. I love getting out in my mobility scooter, even when I get wet! I smile at everyone who catches my eye and get warm responses. It’s a joy. I have created a safe environment at home where I’m resonably ok, apart from trying to do things in the kitchen! 
But when I’m out I’m reminded of my vulnerability. I remember that not so long ago I could walk the dog with pleasure and no pain. I see this shock in friends and family reactions to me. 
I too feel that shock. How did this happen? I know cognitively why it happened but my body remains traumatised. The physio reminded me that I’m still in the acute stage of recovery and I was relieved to hear this as it does feel like that. 
I’m holding trauma both psychologically  and physically. I recognise that my blog has become my way of processing all that’s happened at a thinking level. But the feeling level also needs cared for. I’ve found mindfulness so helpful but if I’m in pain or I’m getting the nerve recovery jumpiness I can find it really difficult. So I have to choose my moment. It’s not easy but I when I can it’s so powerful. For years I thought trauma could be solved by talking it through but now I know that’s not enough. I’m still reading “The body keeps the score” by the psychiatrist Bessel Van der Kolk.Its really helping me understand this process I’m going through and I do recommend it.
Perhaps the greatest experience of healing just now is holding my Grandson in my arms. We are all feeling blessed. My family and friends are the reason I’m getting better. 
I’m also slowly re-engaging with work, including writing, facilitating, coaching, mindfulness. I’m especially looking forward to the retreat I am co-facilitating next month. I’m setting up my office at home to see leadership coaching clients here as well as on skype (or similar). But I’m also considering using my extensive professional, coaching and lived experience to enable others on a one-to-one basis to adjust to the impact of serious illness. It’s a way to make sense of all of this and for me to use all my experience in my offer into the world. 
I would really value your thoughts- I’m on twitter @audrey.birt.

I’m slowly integrating my former self and my new self, trying to accept the changes and find the energy to continue to improve. Jings it’s hard work!

Sunday, 16 September 2018

Ye cannae shove this Grannie; Blue Badge Blues 10

Welcoming Davie 

The first time I understood how important it was to me to have grandchildren was when I was first diagnosed with cancer. I lay awake at night thinking how long do I need to be here for? Initially it’s at least see both the children safely on to secondary school. Then it was leaving school. Then maybe graduation or meeting their life partner. It was always long enough to ensure their wellbeing and that they knew how much I loved them. And I gave myself that goal, whatever I needed to do to secure that I would. But the trade off ( in my strangely distorted thinking process) was that I would need to accept I would never be here long enough to be a Grannie. So many people are robbed of parenthood by cancer, at least I was more fortunate than that.
And as I celebrated each decade thereafter, I felt such gratitude for my survival. At 40 I completed a Masters and had a party for all those who had supported us through such hard times. At 50 I decided to grow my hair again with a small attempt at rebellion to views about what older women should do! At 60 I had breast cancer again but nonetheless managed to share célébrations with my family and friends and savoured every moment of our time together ( and my hair grew even longer!).
I also saw my step grandchildren, who are very precious and have given me such pleasure in my life, grow into adulthood as smart, compassionate and beautiful young women. I’m Audrey to them, not Grannie but that doesn’t mean the relationship isn’t meaningful. What’s in a name; it’s love that counts.
So just as each decade was a time I never thought I would have, becoming a Grannie this week has felt extra special. Nothing quite prepared me for the explosion of love I have not only for Davie ( love his name) but also when I see him with my son and daughter in law. I’m very aware of my physical limitations and could list lots of things I won’t be able to do with him. I’m not so much ye cannae shove yir Grannie aff a bus;I’m more "ye canne get yir Grannie oan a bus! " So instead I am trying to focus on what I can do. Last night as I snuggled with Davie I sang wee songs and promised him I would be there anytime to hear his stories, I would read him many stories. I would do my best to make soup ( with help) and perhaps have a treat tin like my Mum always did for his Dad and Aunty and their cousins. I even promised ( don’t tell anyone), if he sat nice and still, he could catch a ride on my mobility scooter on what I hope will be many trips to the Botanic gardens. 
I think he smiled as I whispered to him. OK well maybe it was wind; but I do know my whole body smiled as we chatted. He is one lucky boy, surrounded by the love of his Mum and Dad, ALL his amazing and talented Grandparents, his Aunty Cat, plus wider family and special friends. If only all children experienced the security and care that brings, it would be a very different world. 


Thursday, 6 September 2018

When truth hurts: Blue badge blues 9

I feel about my outside walker or rollator, as us in the know call them, as I did about the leaflets i was given when I had breast cancer in my thirties. They had older women with grey hair on the front of them. The nurse touched my hand as she gave them to me and I wanted to slap her face with them. I then spent several hours speculating on how I could shred them and post them out the slatted windows at the top in my room in the hospital. It was on the tenth floor, no one would ever know. In the end I didn’t, mostly because I couldn’t reach! 
Back to the walker.....it’s clumsy, heavy and brown. And I hate it. For many reasons. I hate it because I can’t walk any distance anyway and it reminds me of that. I hate it because I need help to even get it out. I hate it because it’s ugly and my heart sinks as I approach it. I hate it because I feel disabled by it. I hate it because it reminds me of how I really am, not the version in my head still. And being honest, i hate it because it feels like something an older person should be using and I’m still only a youthful 62! I’ve looked at snazzier versions and they are slightly better but the truth is I still can’t walk far or easily and I’m not keen to make an expensive mistake.
You see when I’ve recovered from things before I’ve found there is a point when I start to feel better and then it improves exponentially. I’m discovering, and my recent appointment with the neurosurgeon reinforced this, this recovery is much
slower. 
So as a fan of an asset based approach I’ve been focusing on what I can do. I can get to the Royal Botanic Gardens in Edinburgh on my own in my mobility scooter. Not everyone believes that you are really disabled when you are in a mobility scooter. Maybe we just don’t look ill or meek enough, who knows? But what I love is the look on children’s faces. They reflect how awesome this is and they would really love one too! I’m thinking about pimping it up a wee bit. Maybe just a bairns not bombs sticker if anyone has one handy? A good friend was staying to look after me at the weekend and we went out for dinner locally. On our way back we got some good humoured attention from a man who had a walk that suggested he wasn’t quite sober. And the next day we rescued an elderly man in a mobility scooter who was lost; forming a mobility scooter procession that must have been quite an entertainment. He got home safely, saying thanks and that it had made his day to meet two beautiful women. I remarked later that when she came out with me in the scooter we got chatted up! Her rather harsh reply was reminding me that one of them was drunk and the other was aged 100! 

I’ve relearned to knit this last few months. Yes you did read that correctly. I’ve done a blanket for my soon to be born Grandchild. I’ve also knitted a cardigan. But who knew how hard it is to sew baby cardigans up? It’s only because the drugs I’m on for nerve pain are sedating that it’s not gone out the window with a shower of expletives. I’m taking orders for Christmas now.....

Wednesday, 22 August 2018

Coming out of the shadows

Coming out of the shadows; Blue Badge Blues 8
Edinburgh Festival Fireworks



It’s August, it’s Edinburgh, it’s mayhem, it’s the festival. I decided years ago as a resident in Edinburgh that it’s important to embrace it, bring out your inner tourist and have a bit of fun. The other option is to moan about the crowds, the buses, roads being closed and so on and that’s not appealing. But this year I’m only two plus months post op, i can’t walk more than two steps and it’s beyond overwhelming. I’ve been to two shows and to say I’m exhausted is to underestimate the impact. I’m currently thinking I may never try to go to an event ever again. I’ve had to make several phone calls in advance to check accessibility and how to ensure that I can get there with my families support. The planning, the exhaustion and discomfort of the trip, worrying about parking, lifting mobility scooters, gaining access and then just enjoy the show!
My abortive efforts to regain independence are probably my biggest source of frustration at the moment. 
I described myself as living in the shadows recently. I’m hit by such a sense of loss as I acknowledge this. I went to see Loki and he was challenging privilege in his fringe show. His challenge was, where was the male privilege for those men living in poverty, with little hope of change. Good question. There are many forms of privilege and so the show made me reflect on able-bodied privilege. For example 50% of fringe shows are not accessible. The inequalities that open up for the disabled and their carers are well documented. Maybe the disability movement needs it’s own #metoo campaign so we don’t forget and we bring an energy to improving access and involvement.
For the first time in my life I’m poised to apply for benefits. It’s the PiP ( personal independence payment ) form thats sitting by me. Even to get here I’ve had two loops to go through where I felt I was treated a bit like I’m guilty ( of benefit fraud presumably ) before proven innocent. It’s challenging but I’m determined to see it through. I can only think that so many are put off by even these stages and that is the purpose. No wonder attitudes to the disabled need to be challenged! 

But on the upside my efforts this week have allowed me to see two of Scotland’s greatest talents; Karine Polwart and Loki ( Darren McGarvey).Both were impressive and clearly masters of their arts. As well as very talented  both are  thought provoking and challenge you to,yes,see the beauty in our exceptional nation but also to look in the shadows and be honest about our ill divided land. 
If we ignore those in the shadows for whatever reason, if we don’t address the fundamental inequalities in our society, ultimately we all lose. If you don’t know their work do have a listen and check out the Orwell award winning "Poverty Safari". 
Meantime today’s challenge for me is tackling the stairs, wish me luck......
And on other news I made it to the sea side!




Sunday, 5 August 2018

Friendship and flowers; blue badge blues 7

Friendship and flowers

I’m more than six weeks post-op now and I’ve taken down my cards; having read them again. Thoughtful words on a card are so uplifting, please don’t ever think they won’t make a difference. It was with some sadness I was throwing out the dying flowers but then as if by some hidden force over the next couple of days flowers kept arriving; from visitors and even in the post.My house is beautifully enhanced by this array of colour and even more, my heart is full with the kindness and love they convey. I don’t have words to say how much it lifts my world which is quite small just now-being largely confined to home. 
But that said it’s been a sad week. A friend died of cancer, very quickly, having been told of the recurrence just over a month previously. Amazingly she visited me in hospital before she was admitted to the hospice and I’m hugely grateful I saw her then. I’ve reflected a great deal on friendship these last few weeks. Anne and I bonded over dogs and politics; a powerful combination. We also shared some mindfulness sessions here with some other friends which became a real source of comfort for me as my mobility and pain worsened. We called it winefulness sometimes as we took every opportunity ( excuse?!) to share a glass of fizz when each milestone of her treatment was passed. Anne was an awesome campaigner and I rather fear for the world without her commitment to change and passion to make this world better and safer. 
So it’s been a tearful and sad week and also a huge reminder to me to savour life in all its twists and turns.

This time has also reminded me to value and invest in friendship as well as family. So this blog is to honour friendship and for Anne, who is a testament to the truth that each of us can make a difference, not only through our campaigning and influencing but also through our compassion for each other. 

Saturday, 28 July 2018

Reflections on care: Blue badge blues 6

Blue badge blues 6

So I’ve been home for almost two weeks, phew. I’m gently easing off the burden of a long hospital stay but it’s taking time and energy. Gradually I’m building confidence in my mobility and my pain is reducing, although it’s not a linear process; particularly with a broken leg!  I have to be careful not to decline with a bad day and not to over do things on a good day. « It’s going to take time » is the mantra from all of the professionals who are supporting me. I find that phrase a serious challenge! There have been moments of hilarity too like when I couldn’t find the knickers i had taken off, then spotted them attached to the velcro on the moonboot! Not the look i was going for! 

 I’m setting myself goals as encouraged by the OT and physio and thats helping me recognise progress, however slow. The community team have been impressive so far with aids delivered quickly and I do have a sense of them working together to support me. They encourage mindfulness and positive psychology and evidenced based practice, to aid recovery and I’m genuinely enthused by their holistic  approach. Preparing to leave hospital I was anxious to ensure rehabilitation once I was home and that is working so far. I was also acutely aware that the focus of the OT and physiotherapy team in the ward was to get you home.  The impact of targets on discharge and waiting times are evident; even as a patient I was aware of and indeed felt some of that presssure. It’s complex because I also recognised that I needed to get home to improve my physical and emotional wellbeing. BUT I was very aware of my need to be in a safe environment.  The impact of falling was only too present for me, of course. The nursing and medical team were very supportive that I make a decision on whatever was right for me in the main but I remain concerned that targets on discharge from hospital do affect judgement and specifically challenge person centred care. It was right for me to be home but was enough done to ensure my safety initially? I’m not entirely convinced it was. But no pain relief could relax my body like the moment Koshka jumped on the bed beside me and started to purr. My best sleep ensued.
The turn over of beds during my stay in my ward was astounding. I was in hospital over a holiday period and yet never was a bed empty. The patients were all complex and in vulnerable situations; in my bay towards the end I was by far the healthiest! The ability of the nurses especially to shift focus between patients was really skilled and impressive, as was their compassion, whatever the situation. 
The ward itself was old and poorly designed so the working conditions were hardly supportive and the shifts worked were tough. Twelve and a half hour shifts with nurses moving from day shifts to nights and back within a week being fairly typical. The ward will move to new facilities soon thankfully but several times I thought of how hard it would be to work in that way as you got older. By the end of a shift the team of nurses were jaded no matter what their age. How will that be sustainable in the long term?
My experience was generally one of very capable teams, doing their best ( which was pretty good) under significant pressure. But alongside that sits the pressure on the system, of enough beds available, of safe staffing, of waiting times and that creates a huge tension which the teams were left holding. And we as patients in the system are holding it too. When you consider these same teams were caring for and surgically treating people with brain and spinal problems of a very serious nature, you have to question whether this is wise and it’s certainly not helpful or fair. 
I can only conclude we need more capacity and some give, in the services and organisational systems to take pressure of the teams and of course those requiring the service. We need kinder systems and by that I mean they are focussed on human impact and not just efficiency.
I’m so deeply grateful for the care I have had again and it’s helped me refresh my personal commitment to influence that quality service is the norm and sustainable into a transformed future. Also in order to achieve that, it’s vital that the service responds to learning from those with lived experience, we can really help.

So I’m slow, yes, but determined as always to make that difference in whatever way I’m able. 

Friday, 13 July 2018

Blue badge blues poem

Hospital confidential 

A confident stride
the prelude to 
tugged curtains
a breathless introduction

Conversations ensue
maybe the most painful
of our lives
behind paper screens

We don’t hear all the words
but certainly get the tone
the grimness in the phrases
the timescales dodged

Biopsies, scans
lives changed
behind those paper defined boundaries
between your life and theirs

iPads and magazines are stared at
in desperate attempts
to divert attention
from this stranger 

This stranger who’s life has just collided
with ours as I sit uninvited 
a mere bystander
in their unfolding disaster

Curtains pulled back
Words digested
Heads come up
Sad smiles make contact

Another hospital confidential
story unfolds 
and for that moment we are one
in these four beds

All our stories are shared
our tears witnessed
our pain cursed
our lonely fears observed

As I gather up for home
these women’s stories
will be part of my own story here
and be part of my tears shed

tears that slowly relieve the trauma 

and leave it behind