Bedding In Bedding Out emerges from the current welfare benefits overhaul, which threatens many with poverty and with a propagandist campaign that has seen disability hate crime leap by 50%.
Says artist-activist Liz Crow, “I wear a public self that is energetic, dynamic and happening. I am also ill and spend much of life in bed. The private self is neither beautiful nor grownup, it does not win friends or accolades, and I conceal it carefully.
“But for me, along with thousands more, the new system of benefits demands a reversal: my public self implies I don’t need support and must be denied, whilst my private self must be paraded as justification for the state’s support.
“For some months, I have lain low for fear of being penalised, but the performer is beginning to re-emerge; instead of letting fear determine who I am, I’d rather stare it in the face.”
“Bedding In Bedding Out is a performance in which I take my private self and make it public, something I have not done in over 30 years. It feels dangerous exposed exciting. In a gallery, over a period of three days, I will perform the other side of my fractured self, my bed-life. Since the public me is so carefully constructed, this will be a kind of un-performing of my self.
“I want to make a twilight existence visible. But more, I want to show that what many people see as contradiction, what they call fraud, is only the complexity of real life. This is not a work of tragedy, but of in/visibility and complication; a chance to perform my self without façade.
Each day, members of the public will be invited to Bedside Conversations, gathering round the bed or perching upon it to talk about the work, its backdrop, its politics.
Bedding In Bedding Out has been commissioned as part of Disability Arts Online’s Diverse Perspectives project (www.disabilityartsonline.org.uk) which is commissioning eight disabled artists across the UK to make a new artwork. Working closely with host organisations, artists will produce work that sparks conversations and debate about the Creative Case for Diversity.
From Wednesday 10 to Friday 12 April, Salisbury Arts Centre hosts Liz’s Crow’s 48-hour round-the-clock live durational performance Bedding Out. As part of the performance, members of the public are invited to Bedside Conversations, gathering round the bed with a cup of tea to talk about the work, its backdrop, its politics. The conversations will be live streamed and recorded.
Please book for these Conversations in advance.
BSL interpreter and notetaker at all Bedside Conversations
Dawn: Liz, I know many people who are aware of your work but for those reading my blog who may not have come across you before tell us a little about yourself.
Liz: I’m an artist-activist and I work with performance, film, sound and text to portray hidden lives in order to raise difficult questions, spark debate and, ultimately, to trigger change. Projects include a film on the Mexican painter Frida Kahlo who wore corsets because of impairment, to the tale of a young girl with 13 toes, to a radio diary of my own border-crossing experience of visiting Mexico for unorthodox medical treatment, to Resistance, a film-based installation about the Nazi programme of mass-murder that targeted disabled people. My work ranges from the confrontational and provocative to the much more gently questioning.
I founded Roaring Girl Productions (RGP) in 2000, a creative media projects company which combines creative work with practical activism, taking audiences beyond spectatorship to look at how they can be a part of creating change. RGP is basically me, expanding to up to 50 people in the middle of a big production, and it came about because sometimes its easier to fund and distribute work under a company name. I/we have produced a whole range of films, performances, etc, as well as developing new approaches to film and performance accessibility, and trying to model inclusive working in our own productions. There’s lots more information at www.roaring-girl.com
My creative work comes out of a history of activism, ranging from access projects to bus blockades. A long time ago, I was incredibly lucky to find myself in a workshop run by two disabled women who were political activists. They talked about something called the social model, that split impairment and disability, pointing out that disability is created by the social structures that exclude us. It was as though somebody was suddenly talking a language that I recognised, that if disability was socially constructed, then – wow! – that also meant it could be unconstructed. For me it was the most liberating moment I’ve ever experienced and it changed profoundly how I see the world. And even as I’ve realised over time that our lives can be more complicated than that, the social model continues to be pivotal for ending a sense of self-blame and finding a direction and starting point for social change.
Your work is very powerful, for example you dressed as a Nazi and took to the Fourth Plinth in 2009, can you explain what inspires and motivates your work?
Resistance on the Plinth (www.roaring-girl.com/productions/resistance-on-the-plinth) was part of Antony Gormley’s One & Other project, in which 2400 people over a period of 100 days each had an hour to do their thing on Trafalgar Square’s Fourth Plinth. It coincided with the launch of the tour for the Resistance installation about the Nazi programme that targeted disabled people, but also with the 70th anniversary of this almost hidden history. I decided to mark it, but also to draw attention to the messages it holds for us today, where the values underpinning the history are still very much around. When I started work on the Resistance project, I had not expected to see disabled people’s situation become worse, but there has been an onslaught – from benefits reform to the rise in hate crime, the rush to legal rights for disabled people to assisted suicide to the increasing exclusion of disabled children from mainstream schools – that the messages contained in the work seem to be even more urgent now than when it began to tour.
You have been very open about your feeling on the current wave of cuts to welfare benefits. How have these Government measures impacted on your life?
They’ve had a huge personal impact. Like thousands of others, I spent months waiting to be called to apply for ESA, dreading the brown envelopes landing on the mat. I was put in the work-related activity group, where I was to be prepared through activities I couldn’t do for work I’ll never do. I waited another 11 months for tribunal, which found in my favour, meaning I’m safe for now, but knowing the whole process could begin again at any time. For me, this is the greatest personal toll of all: that over years, I’d built up a small and fragile security and that has been taken away. Of course, DLA/PIP is yet to come and I fear losing my accessible van as well as my funding for personal assistance, which is what’s kept me living life in my own home for the past 20 years. Then again, I know people who are way more threatened by these changes than I am.
In the early stages of benefits reform, witnessing the distress of thousands who were called in before me, I lay low. It seemed safer not to be seen. But, with time, the activist in me decided to answer back; it’s not risk-free, but it feels easier to speak out than it does just to be afraid. I realised the night before my tribunal – this frightening, looming legal process – that almost quarter of a million people had been put through it in the previous year alone. I am wondering when wider society will become so outraged at the inhumanity being done in their name that they will demand a halt to it; I suppose that is our campaigning task: to bring them to that point.
The Campaigning and Activist Community can become a little twitchy when Activism and Art combine, how do you feel the two subjects fit together and what words do you have for people who aren’t quite sure how to approach your work?
There’s a suspicion from some campaigners and activists that art is a diversion, a detour from our campaigns, but campaigning and activism succeeds or fails on its ability to communicate, which is what art does best. Some of the most effective direct action, whether or not its participants call themselves artists, has been pure theatre (the early bus blockades providing the most surprising and televisual image of disabled people that communicated the issues at a glance) and music (such as Johnny Crescendo’s Choices and Rights) has provided anthems that have united a movement. To be effective, we need to use every tool at our disposal, and that includes art!
Art can encapsulate ideas, asking questions and presenting viewpoints not seen elsewhere. It can give glimpses into other people’s lives and broaden our view of the world. Artists are good at communicating, at raising difficult questions, and at exploring creative alternatives. Art can make us see and think differently, make an emotional connection to audiences and go on working long after the piece is officially over. We can only make change for the things we know about; for me, the most exciting art brings to light lives on the margins and invites the onlooker to become a part of creating change.
How to approach my work: Mostly I hope people won’t get caught up in what they’re ‘supposed’ to think or say or understand! My work is relatively direct in its meaning, but it’s also there for the audience to take from it whatever is useful to them and this will be different for different people. A work might be a keyhole to an experience outside someone’s own, their own experience made visible, or a way for them to make links to aspects of their lives they’d never connected before. I hope my work does some or all of raising questions for audiences, getting them talking, making connections with each other, maybe shifting how they behave or motivating them to take a stand. In the end, I put the work out there, hoping that it will give something of value to other people and that, their own lives or campaigns, they will use it.
You have a particularly exciting new exhibition this Spring. Can you tell us the history behind your new installation?
Bedding Out is a response to the welfare benefits overhaul. For 48 hours round-the-clock, in an art gallery, I will be taking to my bed, exhibited behind a red rope barrier.
I live a life in two very separate parts. The public self tries to be bright and breezy and happening, and people assume because that’s what they see of me, that’s how I am in the rest of my life. Then there’s the private self, which wins no friends or accolades, where I spend most of my time at home, a lot of time lying down and quite a lot in bed.
This is the self which I have become very expert in concealing. And whilst it has kind of worked for the past 30 years, in the face of benefits changes, it is no longer tenable. Instead, this new system demands a reversal, requiring me to parade my private self to justify support.
In Bedding Out, I will take my private self and make it public, performing the other side of my fractured self, my bed-life. It feels dangerous exposed exciting, and more necessary than ever before. Since the public me is so carefully constructed, so consciously performed, this will be a kind of un-performing of my self. With this work, I want to make a twilight existence visible. But more, I want to show that what many people see as contradiction, what they call fraud, is only the complexity of real life.
At points throughout the performance, members of the public will be invited to Bedside Conversations, gathering round the bed to talk about the work, its backdrop, its politics.
Last autumn, at a previous version of this performance, I was contacted by several people delighted that the work was making them more visible, but too ill to attend in person. This time, Bedding Out will use social media to involve absent people around the world virtually.
What would be the most pleasing outcome for you from this new piece?
One of the things that Bedding Out can do is to can portray the human story set within its broader social context. The work is not just about me, but is a symbol for the thousands of people who live a bed-life. There is something about playing it out in a public space that goes deep to the heart of what that life means. It is a chance to raise more challenging questions by setting the bed-life overtly within the present, very difficult political, climate.
My hope is that people will come and see it, pitch in via social media, use it to talk to people new to the issues raised, use it beyond the gallery space and after the performance is over. I hope that Bedding Out will become part of the much larger conversation of disabled people, supporters, the Sparticus campaign, DPAC, Black Triangle, UKUncut and others; and that by using a wide range of approaches we can be effective in reaching many more people.
I’d like it to reach the people who most need to be exposed to the ideas in Bedding Out, but that’s a collaborative thing and it will take other people – your readers! – to get the word out. My hope is that all these voices combined can inform the public to a point where their outrage forces a change in benefits reform and cultures of work towards a system that is humane.
How can people get involved and learn more?
Bedding Out is a 48-hour round-the-clock performance starting at 2.00pm on 10 April at Salisbury Arts Centre and on the world wide web – with lots of ways to get involved!
Bedside Conversations (duration 40 minutes) will be live streamed with audio, BSL interpretation and live subtitles: Wed 10 Apr 2.00pm and 6.00pm, Thu 11 Apr noon (via Twitter) and 3.15pm, Fri 12 Apr 10.15am.
You can follow the work – and join in! Use the all important hashtag #beddingout. And I’m so excited that you, Dawn (@quinonostante) are going to be ‘tweetmeister’ for the project, tweeting in the weeks leading up to the performance and throughout the 48 hours. Tweets will include live updates on the performance, audience reactions and Bedside Conversations, as well as responses to individual tweets. And there will be an all-Twitter Bedside Conversation on Thursday 11 Apr at noon.
We’re beginning to hear from individuals and groups internationally making plans like these:
To pitch in to the twitter feed – give their response to the work, talk about the issues raised – and join in the twitter Bedside Conversation
To stream the work continuously in the background of an event or conference
To watch a Bedside Conversation in a disabled people’s organisation, student seminar or other group, discuss it, tweet it, blog it
To use the work as a trigger to produce their own art/performance/activist piece, etc.
This is an experiment: we’re not aware of this kind of virtuality, with this level of access, having been attempted before. We’re hoping the tech gods will be with us and we would love you to be a part of it. The work is there for you to make use of. There are no rules on how to use it so please adapt to your particular interests and circumstances – but do use it!
Before this interview we chatted about how it’s not really long ago that physically disabled and mental health campaigners were two distinctively separate groups yet that we’d both recognised a huge shift in this over the past couple of years? It’s clearly a hugely positive transformation and has opened some inspiring discussion. What you you attribute the change in attitudes to?
Sometimes good surprises emerge from bleak times. Even for those of us active within the disabled people’s movement have found our personal stories and ways of living consigned to the margins, so that full inclusion has been missing. The benefits onslaught, coupled with hate talk in so much of the press, has meant we can’t afford to be silent about those experiences anymore. As we’ve spoken out, the connections and overlaps in experience that were always there – the kind of themes I’m working with in Bedding Out – have become apparent and this brings the possibility of our becoming a much larger and more effective supportive and campaigning voice.
Without sounding all Pollyanna – and I so wish we had never had to face recent events – I am in awe of the strengths that have emerged over the past couple of years – the skills and strategies, new alliances, deep compassion, organisation and resilience. I believe these strengths have partly emerged from this greater diversity of people, not only on the basis of impairment, and this bodes well for our future as a more inclusive and comprehensive campaigning movement.
What’s next for Liz Crow?
Oo, well, it’s surprising how exhausting 48 hours in bed can be, so a good long recovery time, out of public view! I’ve been asked to take Bedding Out to Edinburgh Fringe in August. Then I hope to spend some time dreaming up the next project…
Adel! What is it? What do you see? Your eyes filled with the sadness Of my mystery.
How did you find her? The child you say is me. The girl peering fearfully From behind a dark tree.
Who would have thought I would be following in the somewhat large footprints of Martin Clunes? Certainly not me! But apparently so since I was visiting where he had been a mere few days before. ACE (Animal Care in Egypt) is a UK charity I have been are of as long as I have been visiting Luxor. However, since we normally arrive in August, time of only ‘mad dogs and Englishpeople’ the prospect of visiting an animal hospital in fifty degrees of celsius is much less appealing. Today I got my opportunity since Barry and Fran (my adopted Aunt and Uncle) were going to be there.
It was not without misgivings that I went along. I am a person who is not comfortable with human or animal suffering, and for whom emotions are running slightly out of sync at the moment, and I did question whether I really wanted to spend the night lying in bed sobbing, after all I was the child who cried when horses killed by arrows in cowboy films, and then there was the movie where an entire tribe of Indians and their stallions were lured to their death from a cliff fall, and then there’s Lassie….I’m sure you are getting the picture. It could have been a hurdles or high jump moment – that decision to go!
However, hot on the heels of ‘Hello’ magazine, Martin Clunes et al I found myself facing the animals at ACE, the charity whose motto is: ‘Give a man a fish, feed him for a day….Maintain his donkey, he can feed his family for years.” And there was indeed terrific sadness. There’s a horse in paddock who was burned to the bone by a stable fire, there are open sores, and bites, infections, and breaks. Indeed for many an animal ACE will be the place where it finally closes it’s eyes forever, and it’s working life will end. (Dawn’s eyes are playing MISTY right now)
However the dedicated individuals who work here daily and tirelessly have created a something remarkable. Not only is ACE a refuge for the sick and maimed, it is a centre of excellence in education. These fields and buildings are not the centre of death but the beginning of hope for the working animals of Egypt. Slowly and painstakingly they are teaching the owners of these animals that if they look after them, care for them and see them as living creatures, not only will they live longer, they will cost less in the long term. In a country where poverty is rife this is a pretty slick hook!
Mr Clunes is wise to become the patron of hope for this Chartity caring for domestic working animals and if you find yourself in Luxor I would encourage you to visit. You can check them out at http://www.ace-egypt-org.uk.
(and the badly burned horse? Healing nicely and grazing well thanks to the hard work and devotion of the staff – photo’s will follow).
Egypt it seems is a land where it is not ‘one day at a time’ more ‘one experience at a time’, and these past two days have been filled.
Yesterday Hazel took me to see Adel, who is the local herbalist and healer. Tomorrow I must bathe in a mysterious blend of leaves which have been kept overnight under the stars, and eat dates, which have been soaking in a bowl etched with passages from the Quran. (I’ll keep you posted.)
After ACE today I visited a French restaurant out past the Colossi of Menmon, called ‘The Three Jackalls, where I watched the sugar cane train hurtle by, and the orange sunset whilst drinking a cold glass of Stella (Egyptian Stella, not to be confused with the British Stella Act-A-T*at)!
After all of this I was then to become victim to one of Luxor’s oldest Tourist scams! Barry and Fran dropped me off to catch a motorboat to my hotel. Barry had negotiated a price, the same price I’d paid only days before. As soon as I was out of earshot of the jetty, the driver of this boat tried to double the price. Here again was a high jump moment, I could give in and be in my room within 10 minutes…. or…..
And it was ‘or’ which won, as I demanded to be returned to where I’d just left. Barry was waiting and said something which I am sure was unpleasant in Arabic to this driver.
I ended up catching a cheap ride to the other side of the river, meeting a friend who chatted to me, and walking the 1/2 or so back, by which time my ‘hacked off’ energy had moved on.
This is the second time I have written this, since the computer is playing at being an ‘a*se’ too….but I persevered. I hope to hang onto this attitude…..
Coming in out of the cold for these precious days here, didn’t mean leaving those behind to freeze, which is how yesterday’s drama’s unfolded,when a frantic message about defunct central heating and who to contact was sent my way.
Seemingly I am the keeper of information, the storer of numbers, and sorter of house things. I hadn’t intended to be these things, but it would appear I have over years morphed into this gatherer and storer of normally quite useless information, of which sharing would have proved useful to others in order to counteract situation ‘malarky’.
And there was indeed a ‘situation’. A freezing family, and a travelling information bank-difficult to contact, and whom a family is reluctant to cause any further ‘anxiety’ to. Getting the message meant that I had to act swiftly to inform property agent, arrange plumbers and access to the house, from here, from serious ancient mobile phone I keep for travel, which seemingly has a mind of it’s own and tries to confuse me with predictive texting functions I’m certain I’ve not selected.
Having set things in motion I began to relax, not without a certain degree of guilt I took Paul O’Grady to the poolside to read, and enjoy the warmth of the sun. I took a long bath, and then wandered to enjoy a very chilly sunset with Hazel.
England it would appear, had suddenly become more complicated that Egypt. The boiler wasn’t going to be mended instantly, it needs mysterious ‘parts’, which meant that I could not relax into the smug comfort of thinking I’d ensured all was well at home. I shared these feelings with Hazel, her response was very clear. “Think of it another way, could you have coped with the stress of it all if you were there?”
As a lay waiting for sleep last night I thought of her words. I knew that loved ones at home were not entirely comfortable, but had found ways to heat, and the shower is electric. I knew it wasn’t ideal, but they would manage. I found the place in my mind where the UK is hiding away, and I could see my thoughts and feelings swirling around. They’re humming their tune on the long wash, gently going around and around and around….but the cycle ain’t finished yet, and I’m not ready to open the door.
I was never any good at hurdles at school. Each summer they remerge from the hut and be lined up for my displeasure. Apparently there is a technique to hurdles. It involves some kind of forward action with one leg and doing something else with the other. By the time my number, and sequence blind brain had absorbed the instruction (which I felt was on a par to the ‘hop skip jump’ malarky of the long jump, which in my case was usually ‘hop, skip, flop’.) the first hurdle would be upon me, and I would simply freeze. By then, because it had taken me so long to go for it, I’d usually seen other racer’s more unfortunate encounters with the metal thing, which left them sprawled and tangled in the contraption. It all seemed remarkably dangerous and silly to me, hurdles were not my thing.
I was however pretty slick when it came to the high jump. A run up, jump and scissor like action with the legs and over, and onto the safe, soft, plush, sinking, huge blue mattress they placed on the other side. Yes, the high jump was most certainly a much more sensible sport.
These memories of school sports have retuned today as I have considered this time away. I’ve not travelled alone for this length of time, there have always been others, and these ‘others’ I now know do so much.
This afternoon I was deciding whether I should go for the hurdles or the high jump. I needed some shopping, and to get to Hazel’s house for dinner. Running the gauntlet of getting to your destination here can be quite an event. getting past the line of calesh men, boat men, and various calls of “tax?” (taxi) can jade even some of the most seasoned of traveller. As for shopping – that’s a whole different ball game! I knew too that for around 13p I could take the high jump, a taxi in this case. I’d be taken to the shops, he’d wait and deliver me and my bags safely to Hazel’s front door.
Whilst watching the sun set I pondered ‘hurdles or high jump, hurdles or high jump’? Eventually I set off and went shopping for my various items including:-
- Man In Shop: (smiles).Hello, how are you? How can I help you?
- Dawni: (makes motion of removing nail polish) Do you have remover?
- Man In Shop: Colour? Yes many Madame ( motions to cabinet behind him).
- Dawni: (thinks quickly) La, la colour (la=no), ‘erm, take off colour?
- Man In Shop: (beaming grin) Ahhh, anti colour!!
Within the hour I made my way to home cooked beef casserole with Hazel and Sayeed, complete with purchases, including my ‘anti-colour’, and with the realisation that ‘hurdles’ were not always the scary metal monsters of my past, and going for the high jump wasn’t always my best option.
Yesterday the sun kissed my face, It reached down from the skies, And lightly brushed my cheeks, Fuelled them with it’s heavenly warmth, And eased my furrowed brow, Returning then to it’s rightful space Blessing everyone.
The curious case of Doctor Who is a hefty tale to tell, he lives far out on West Bank here, his view of the sweeping treasure filled mountains astounds everyone. He’s built himself a home of happiness where life breathes in mud painted mud walls. George calls himself ‘the crazy white Egyptian,’ and maybe he thinks that’s true. Having met this man before though I know there’s great depth, humanity and compassion hiding behind his flippancy and smile.
His tardis, in the land of traditional farm buildings, where his Neighbour keeps her pregnant buffalo in the ‘lounge’ at night, is quite an astounding feat. He boasts a cinema, a traditional clay pot pigeon loft, a well, and brightly painted loo! He has introduced ducks into the stream which runs along the street, which has caused quite a stir, not even ducks in Luxor know that water is their rightful home.
His Guardian is earless Bear Cat, who greets you will a weirdly human “hello”, and. The local children shout to him they love him, and I’m quite certain they probably do. He is light and smiles and provider of treats for one and all.
His life is a breath of fresh air, a fridge of chilled wine, a desire to live today, and to his motto? Quite possibly “Que Sera”.
A busy day yesterday, the Tardis and Dr Who, Fran and Barry’s house (they early retired here too). I gently being looked after, invited here and there.
I banish thee Oh Screaming dream, Rearing Your ugly head, Terrorising My slumber time, And tearing me from my bed!
You will not sabotage My need for rest, Invading my peaceful sleep- Tiresome cuckoo in my nest!
My heart may pound When you arrive with your lament, And yes, I may feel fearful Yet my patience with you is spent.
Begone! There’s no place for you It’s time for you to go, My choice is to ignore you, May you drown in your own woe.
And now onto that balloon! I watched this morning as a captain landed his mighty air balloon and his passengers disembarked. Then began the deflation of the balloon. It’s such a simple process, it lies on it’s side and dies, the life giving air, quickly expelled until all that remains can be folded neatly and put away for another day.
I’d watched that ballon alive and gliding only minutes before, it was buoyant and filled with energy.
It didn’t seem sad to see this great air creature devoid of the means to fly, but it did feel like a loss, the same sense of helplessness I’ve felt as my living energy has slowly left me over these past weeks, and my ability to soar has been stolen – for now.
The balloon has the promise of tomorrow’s new passengers, and I have the hope of renewal. We are not then, too dissimilar.
Yesterday I may not have got the omelette, but I did get to laugh, and unfettered laughter devoid of thought, and fully spontaneous. Hazel and I, (Hazel lives here, and owns a sailing boat), were awaiting the return of her ‘tourists’ who were enjoying their romantic sunset cruise, and we laughed, not at the romantic cruising tourists – that would be mean, but just the laughter of catching up, talking and hearing her stories of life here.
We also laughed at the duty free shop malarky. ‘Malarky’ is a favourite word of mine, and I love it’s ability to encompass so many situations, the duty free shop being one of those. You see, there’s allegedly a limit to the amount of items one can purchase from the duty free shop, a legal limit. With this in mind I’d asked Hazel whether she needed anything and off we went. “How much can I get?” I asked the manager and his 3 staff in the then empty shop. “How much do you want?” was his smiling response.
Suddenly, and from where I will never know, appeared lots of men, all purchasing 200 cigarettes, on my passport. Then the cab driver asked if he could buy some, and give me the money, “Sure I don’t smoke’, said I.
After this incredible ‘malarky’ the mysterious men disappeared into the ether, I left with my meagre purchase, Hazel with hers, and then cab driver gave his bounty to the Policeman on the roadside. A Policeman who laughed and laughed and thanked and thanked. Absolutely bizarre and very funny, especially since the manager of the shop said as I was leaving “You know you should come 48 hours after arrival?” And I said “Yes, I only got here yesterday?” To which he responded “No we did special favour for you.” Visa stamp reading is apparently not their strong point, or the understanding of ‘favours’ of which I’d apparently unwittingly granted many in that 1/2 hour.
‘Something Got Me Started’, that one line from a Simply Red
track was running through my mind most of the mostly sleepless
I suppose it’s apt; something indeed must have got me started on this lonely trip down the street of gloom, but trying to untangle triggers and reasons behind why depression chooses to land in that room in of my mind reserved for times gone is another thing I can’t quite work out, not just yet.
Lying in bed this morning knowing the sun was shining outside was a reason to pull myself out of bed and draw back the drapes, and such a simple act, something we do daily was a beginning. As I watched hot air balloons peacefully floating in the skies and boats meandering their way along the river, the thought of deciding to plot my own course to
recovery began to form a shape in my mind.
And so it started, with the simple act of breaking the fast. Going to breakfast however presented another issue – leaving the room, and eating alone. Many of you who know me will be thinking “what is she chatting? She is always in some hotel alone”, and it’s true, and I usually breakfast alone, but today was different, and scary, and I knew that if I
didn’t do it, not only would I possibly never do it, but I’d alsobe pretty darn hungry eventually. So began the preparation, the creation of Dawn. Face on, smile fixed. Remembering to breathe seemed to be something I’d suddenly realised I had to do too.
I found myself a nice quiet table at the back of the breakfast room where I could observe at a safe distance. I was hyper aware of being on my own, and desperately trying to look comfortable. I almost wished someone would wander over and place a plate of foodin front of me taking away the need to approach the looming breakfast buffet. There was a queue for the omelettes, I really fancied an omelette. It was the first time since Bryce’s soda bread
that I’d really had a urge to eat something because it was making my mouth water, rather than because I should eat. I wandered around the buffet, picked out some bread, found some hibiscus juice, some honey, and edged my way to the omelette queue. It was a very
ordinary and orderly queue, there was nothing untoward going on, noone was pushing in, or tutting and sighing about waiting for their eggs of choice, people were even talking to each other and smiling!
However for me the omelette queue suddenly seemed just a line too far, at least for this the first day at breakfast alone. Lost for a while I found myself thinking everyone knew I was intimidated by the omelette queue so I made a big thing of looking closely at the
melons, pomegranates and yogurts. Looking however, meant I located eggs, hard boiled hot eggs. “OK,” I thought to myself, “This egg was not the egg I planned to have today, but it is an egg, warm, fresh and mine.” Thus today I didn’t manage the omelette queue, but I got the egg, and I broke the fast, and began the challenges of moving forward…..
Weepy and worried on an aircraft is quite possibly quitter disturbing, not for me you understand, I’ve been weepy, worried and more for a couple of months now, albeit not on an airplane, but I imagine it could be unnerving for my fellow passengers nervously wondering whether my boots have been thoroughly inspected for dodgy substances. Their concern about their red eyed travel companion compounded by the fact the captain held the aircraft for 45 mins due to an “unidentified sound” coming from somewhere mysterious on the plane, which turned out to be a faulty fan in the loo!
‘Convalescing’ – I’ve been pondering this term since my family agreed that it was something which may help me recovery from what has been crushing depression and crippling anxiety. Yesterday I heard that a dear friend’s wife is suffering from pleurisy – a nasty illness from which she will need time to convalesce, and rightly so, but I felt aware, acutely aware, that there was a difference about the way I was viewing my own opportunity to go away somewhere to recover. Guilt has reared it’s mighty head, what sort of mother am I that I need to leave my loving and giving family and go away somewhere alone to get well? Why do I deserve this ‘special treatment? Why would they give me such a selfless gift? After all haven’t I quite possibly made their lives much more difficult over these past weeks? Surely my illness and it’s burden on all of them means I can’t be deserving of the luxury of ‘convalescence’?
I’m curious whether these thoughts are born of the illness itself, is it self-stigma, or is it from somewhere much deeper than that? Does this feeling of being part of the ‘great undeserving of compassion’ come from a societal view that people with mental illness, especially bouts of severe depression, should “damn well pull themselves together and get on with their lives?”. I can no sooner answer my own queries any more then I can show this depression the door just yet, but I think it’s certainly a set of questions I will look at again at the end of this extremely unusual and generously given gift of respite.
So, I end this first blog post on an aircraft, above the clouds, journeying into the warmth of friends, but also into the unknown because I’m doing what comes very unnaturally, I’m facing depression head on, and not just for my sake, ( although that is my primary selfish concern), but because I need to able to say, to the family who are sacrificing for this, that I really gave it my best shot because I want to return to being all that I usually am to them, and possibly more.
My illness is invisible, You can’t see it,
But I spy it, lurking, and waiting,
It’s in dark corners, hidden in old memories,
And it watches, it is patient, it is rich,
Full of stolen bounty, fat from the treasures it seeks.
My illness is silent, You don’t hear it,
But it deafens me with it’s hollow laughter,
It taunts, it chides, reminds, and sniggers,
It knows not of rest but of chatter and noise,
Of jibes, of screams, and it hisses it’s warnings.
My illness is painful, but You’ll never feel it,
But I taste the blood it steals from me,
I’m powerless as it stabs, as it bites, and
Leaves me, wounded, broken, damaged,
And returns to it’s lair, silently awaiting.
My illness it’s real, but will you ever believe it?
It’s name is known, but quietly uttered,
In walls of shame, and hushed tones.
And it knows your fear, as it wanders through our worlds
Cutting through us one by one, mercilessly.
I write what I feel....however it will not always make pleasant reading!!! Take it as a warning if you like This is my space to release my thoughts my feelings etc, take away what you want, leave the rest....but please don't abuse me for being honest