Regular readers of my blog series and followers on Twitter will know the name of Alison Cameron and share my huge admiration for her. In July 2013, I published in two parts her powerful, moving and indeed unforgettable story: Part 1 and Part 2. It has attracted huge interest and become an iconic tale of how a strong, highly educated and talented individual can be rendered totally passive by the ‘system’ and the devastating effects this can bring. If you haven’t already read these, I strongly advise you to do so before reading another word.
It was very brave of Alison to write her story but it was also scary for me. It was clear that although she had made huge progress, Ally was still in recovery from very serious mental health problems. Ally’s story was incredibly honest and raw and we stayed in close touch to make sure that she had no regrets and to help as best I could, at least as a friend, as she navigated the continuing rollercoaster that she describes so vividly.
Fast forward to 9 July 2014… It is a huge honour today to publish this blog. An **exclusive** that leaves me smiling like the proverbial Cheshire Cat. Goodness knows how a certain Scottish gentleman will be feeling…
Out of my Box
My guest blogs for Gill @WhoseShoes were a tough write for me. It was the first time I had written in detail about my old career working on international projects and linked it to my thinking these days. I spoke about the Half Life I felt I was living – the before when I had my job title and what I thought was a safe career progression, and the after when it seemed my identity had to be handed in as the price for becoming ill.
The overwhelming response I got from Gill’s incredible network helped me get over my fear that I have nothing of note to say, and certainly nothing to give. It challenged my perception of myself as “throwaway” – destined to be the scourge of Daily Mail readers everywhere, a sofa dwelling skiver, bed-blocking “heart sink patient” and nothing more. For although I have long been a campaigner against stigma when it comes to others, I have to admit to being my own worst critic – buying into the prejudices of others, a perpetrator of the harshest of self stigma rooted in shame at having failed, at having “allowed” myself to become ill.
Some time ago I wrote an article for our friends at @SITRApolicy the image they chose to illustrate it for the cover of their journal was of a woman trapped in a specimen jar. The question I ask myself now is to what extent was she trapped because she had been put there, or was she in there by choice for protection?
One of the biggest lessons I have had to learn that the boundary breaking I advocate is out of comfort zones for all of us. That we are all protected by the familiar and change can be scary. My “patient” box was rather bleak to be in for as long as I have, but it was familiar so to some extent I felt safer staying put.
Since I last wrote my thoughts for Gill a lot has changed. I have been asked to do more and more, to talk on my experiences and what they can tell us about what could and should be changed in the services on which we depend. It has been overwhelming at times, stressful, scary and exciting in equal measure. My default position is to want to hide somewhere quiet. I am an introvert, believe it or not, and it is going against the grain to get up and talk about some of my darkest experiences in front of large groups of people. However, my motivation is that the fifteen years since I was diagnosed with PTSD and started the descent into oblivion MUST mean something or this will mean that a significant period in my adult life will have been meaningless. For that reason I force myself out of my box, and cross over the minefield on a regular basis.
To begin with a lot of it was based on “survivor guilt” – not only were my colleagues killed, since becoming ill I had also met patients in the same position as me who fell through the cracks between services. I climbed out somehow and they were not able to and are no longer here to tell the tale. I felt an obligation on some level to make up for surviving when they didn’t. One of my wise and tough teachers in life challenged me on this. I realised that he was right. Maybe guilt at being alive used to be my sole motivation but this was no longer the whole story. The new element was that I had started to love what I do. I realised how much I was getting out of meeting people through this new work. As frustrating and tiring as it can be, there is nothing quite like that moment when what you have said creates a lightbulb moment in a professional about working in a new way, or when a fellow patient realises from hearing my experiences that their diagnosis need not be the end, but a massive new beginning.
And then there’s the people I get to meet. My darkest times were all about isolation. Unless you were preying on my vulnerable state, worked in an Off Licence, or were a paramedic or A&E doctor, I would not be talking to you. I was literally in my own twilight zone – a bleak and lonely post apocalyptic landscape. Thanks in no small way to how I have taken to Twitter and Twitter to me, this is no longer the case.
My first Tweet Up (real life meeting with a Twitter contact) was with @ClareOT. I was so overwhelmed by this incredible woman in glorious technicolour that I ended up blubbing – I so identified with every word she said. Then there’s my Role Models in Disruption @ShirleyAyres and @HelenBevan. The #patientleaders team go without saying – @MichaelSeres, @anyadei, @GleefulKaz @patientleaders. Special mention must go to @patientleader. Dominic and I got off to a really dodgy start when he challenged something I had said. An amazingly powerful conversation later on LinkedIn led to what has become something of a Mad Auntie/Wayward Nephew relationship and we had our first Tweet Up in a henge in Huntingdon surrounded by druids, bellydancers and men in tights. It’s a long story but hooray for the unexpected that is always just round the corner with Twitter.
Special mention has to go to @WhoseShoes and @Gills_Mum. Gill is the best connector of people I have ever met and I love her work for its authenticity and barrel load of quirkiness. I know where she gets the latter from having become firm friends with her Mum. We have had the best chats covering everything from “Scots Wha’ Hae” to comparing our local duck populations. I got to meet her recently and while it is possible to make real friendships on Twitter, you miss the twinkle in someone’s eye! These two incredible women have done so much to encourage my writing and this has been a huge factor in my being able to do what I do now.
This is starting to sound like an acceptance speech for an award… which is funny really as last week I got an email from the Editor of the Health Service Journal containing this:
“I am writing to congratulate you on being selected by the judging panel onto the 2014 HSJ Inspirational Women in Healthcare list.
The list, which launched last year, celebrates those women in healthcare who are driving transformational change within the NHS, both in clinical and non-clinical settings. With our partners, NHS Employers and NHS Leadership Academy, we will be celebrating inspirational women in leadership and top executive roles, but also those making a difference on the front line of the NHS and within middle and senior management positions”.
I have no idea who nominated me but there are a few Tweeters whom I suspect! If it is you I can’t thank you enough. It is quite overwhelming particularly considering where I have come from to be considered as having made a difference to Health and Social Care services.
You may wonder why these awards should be necessary. Actually they shouldn’t be. However, I was privileged to attend a HSJ Healthcare Leaders’ Summit last year and was struck at how few women relatively speaking were present and further down the pecking order still were people labelled “patient”. Anything that provides role models for anyone whose label makes it more difficult to be heard is a good thing in my book. If it helps even one woman held back by stigma from others and herself to break through that, I will be very pleased indeed.
Having my Dad with me at the reception to publish the list of this year’s list is the most important thing for me. Dad used to come down from North East Scotland with my late Mum to visit me in hospital having once again found myself in a life threatening situation. Or worse, he would come down not knowing where I was or in what state he was going to find me. I can’t change those things or ever fully make up for the theft of their peace of mind but what I can do is make living amends – to continue with my recovery in a way that makes a difference for other people.
When I concluded my recent speech on the final day of the NHS Graduate Scheme for 2014, I urged the trainees to break down the walls of the boxes while they are still cardboard. Fear can cause the walls to “petrify” into concrete, then we have defensive bunkers – the silos with which we are all familiar.
With the help of the vast network of friends I now have largely through Twitter, I am finally getting the courage to break down the walls of my own box. There are scary but exciting times ahead but as Seth Godwin said
“If it scares you it might just be worth doing.”
Postscript: I am very happy to announce that, as it transpired… I got an award too. But that is another story. I will blog about it shortly, but as you can see Alison and I were pretty chuffed about it!