My reflections on #Bedding Out

DSCF6097Bedding out – Power to the bed

This week saw Liz Crows bedding out interactive performance protest.

I call it an interactive performance protest, as to describe it as simply performance art would be demeaning of its purpose, origins and message. To say it was a one woman protest made from her bed would also be to deny its power. During Liz’s one woman bed protest (in Salisbury Art Gallery), she certainly got a lot of people tweeting and talking. The inter-activeness of it, was very empowering for all who became part of it.

I became aware of the project via twitter in the days leading up to the project. I could feel the personal anxiety Liz was feeling as she prepared to publicly reveal the part of her life she had kept hidden not just from the ‘outside world’ but also from many of her friends. I could connect with that. Although my friends had known I suffered from PTSD as a result of the London Bombings, not many of them knew what that really meant, other than they were highly unlikely to ever get me on a bus or metro. The real story remained untold.

In the days leading up to #Beddingout I could feel that same anxiety I would feel in the days leading up to me getting on a metro or travelling, from Liz and her tweets. I sent her a few tweets, and she replied. Her bravery was inspiring. Around the same time, I had a couple of other conversation’s, one with my sister and another with a friend with PTSD. These conversations jostled in my mind, and I felt I wanted to stand in solidarity with Liz, and my friend. Her bravery inspired me; the bravery of others has always inspired me when trying to overcome my own PTSD.

And so, as Liz prepared to bed out, I started writing. I wrote a blog about my PTSD. Given my reluctance to share what it’s really like with even the closest friends and family, I didn’t expect this piece of writing to contain much. The friends I have helping me and inspecting my blogs before I hit publish usually have to try and tease the personal stuff out of me. It took months of nagging from one of those friends before I reluctantly agreed to write my first ever blog last year. I have been a somewhat reluctant blogger.

Somehow a few hours later, I had a document which was over 4000 words long. I knew it was far too long for a blog, but I couldn’t work out what I should remove. Don’t get me wrong, there was so much more I could have told, still so much more to tell about my personal experiences of PTSD, 4000 words hadn’t actually even scratched the surface; again this shocked me.

I sent the blog to my ‘editorial team’ the two friends who inspect and feedback before I hit publish. One of them, who writes for a living and often says ‘I know there’s stuff you just don’t want to share’ told me it was ‘very personal,’ My other friend, ‘the Blog master’ called me and told me he was worried ‘people would think I was really quite ill’ The Blog master has actually been on an empty train with me. He has seen the fear, and reluctance and trepidation first hand when he tried to get me to step on an empty train – and even he was shocked. He had seen what goes on, on the outside, but he hadn’t known what was going on, on the inside.

The blog we all agreed was far too long. Could it be published in two halves? I tried to dissect it, but it just didn’t seem to work, I decided instead to risk people getting bored half way through and just abandoning it. I still couldn’t decide whether to publish the blog, and changed my mind many times over the next twelve hours. But as Liz started to #bedout it finally gave me the courage to hit that publish button. I immediately felt sick at the thought of people reading it, so watching Liz, online, in her bed and sending her tweets was a relaxing distraction. I would of course peek at my wordpress stats, and again felt more and more sick as the numbers went up. Firstly I only shared the link with friends, but the following morning, I was brave enough to tweet the link to Liz. I was humbled and shocked that it found its way onto the Roaring Girl productions #beddingout website. My blog was part of #beddingout. I felt a little scared, but I also felt proud to be part of the #beddingout community.

The response I have received has been amazing. I had no idea my sharing of my PTSD would benefit so many others in the way it has appeared to do. The replies I have had, have taught me I am far from being alone; and I have helped not only others with PTSD, but the professionals helping them. Without bedding out, I would never have achieved this. The response I have had, made overcoming my own personal fears so worthwhile. This is just one ‘spin off’ example of the power of bedding out. Power to the bed.

Liz bedside chats were inspiring. Liz has a beautiful voice, and is an eloquent speaker – she explained her eloquent ability to communicate put her at a disadvantage when having to justify her disability. I could understand that, people often don’t treat me like I really have a condition which impacts my health. I often feel I am treated as if I am stronger and can cope with anything life throws at me because of it; and because I am able to speak, quite coherently to a room full of strangers at events I am invited to speak at. Yet if Liz and I weren’t able to communicate so well, that would also put us at a disadvantage.

Where do we find the balance, not only with regards to our voice, but pushing ourselves and our health?
How do we balance our achievements, and the personal cost of those achievements?
How do we balance our public self, and private self?
How do we balance our health and our medical conditions?

We are faced with a choice – pushing ourselves beyond our boundaries, or living a half life, an unfulfilling life… no quality of life at all, if we agree to live only within the confines of our medical conditions.
Is that really all we deserve?

The twitter chatter from other participants, many of them also from their beds (through NO choice of their own) was enlightening. I started to realise what a vast community we are, so many people trying to live to their full potential (as the equality act says we are entitled to), but bearing the cost, privately. Fearing their disability or condition is being doubted because of their achievements, yet determined not to be held prisoner by their need for their bed time, or to recover in what ever way they need to.

On another personal level, I spent three whole nights in a row, in my own bed. This may not sound like an achievement or anything of interest; but it’s actually highly unusual for me. My insomnia means, I am usually more likely to go three whole days and nights without getting into bed at all. But I felt to be part of the #beddingout community I really did have to try. I can’t say I slept particularly well, but I did resist the urge to take the laptop with me, and only used my phone a couple of times despite my hourly wakenings.

Until #beddingout I had – ignorantly – also believed that I am very unique, that my PTSD being caused by a horrific experience on public transport limited me, and only July 7th PTSD sufferers with regard to public transport. But engaging with the #bedding out community, I started to realise, just how many mental health conditions make using public transport very difficult, if not impossible. I am not alone. I would not be the only person discriminated against due to the mobility allowance criteria being focussed on ‘can you walk 20m?’ yes I CAN walk 20m, but I can’t practically walk 10 or 20 miles each way every day, can i? my car is my life line, my disability aide, it is not a luxury; nor is it a luxury for many others. I had lived in ignorance of the circumstances of others – until #bedding out.

The online twitter chatter allowed me to connect with so many other brave individuals, and I could sense our empowerment, and our voice growing stronger, and louder with every bedside chat. We need to keep the conversation going, we need to continue to unite our voice. We must not be divided by the differences of our particular conditions, but we must unite, valuing our differences and talents and working together to overcome these punitive changes to welfare reform. We must get ‘the truth’ out there… we are not scroungers or fakers… we are living and winning daily battles that politicians and point scoring systems simply cannot comprehend.

Thank you Liz for your bravery and inspiration.

Thank you Roaring Girl Productions for your skill and expertise sharing this project with the world.

Thankyou to every person who #beddedout this week. You were all rather marvellous bed fellows!

Keep the #beddingout conversation going

http://www.roaring-girl.co.uk/

https://reallylisafrench.wordpress.com/2013/04/09/a-life-with-post-traumatic-stress-disorder/

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