The Reveal

More from my All my Bad Work portfolio where I share photographs that I wouldn’t usually want people to see . The self portraits here are a million miles away from the beautiful selfies you can find with a swipe or mouse click. I live with a fair amount of fatigue and pain and I took these today when feeling exhausted. I feel so old. I look and feel totally worn out and seeing that made me cry.

Does it really matter that I look far from gorgeous ?

When I was editing I took a deep breath and tried to see the story in the pictures. For a moment it was no longer me in the images, all that mattered was the connection between the subject and the audience.


Inspirations for The Two of Us, my monthly radio show

Some years ago I had my very first radio show ‘The Conversational’ on Reel Rebels Radio. I became ill in 2011 with Lyme Disease and the unrelenting fatigue meant that I could no longer continue with the monthly show.  A great deal has happened in the years since. I’m still unwell but I’ve become more accustomed to it. It would be a lie to say that I’ve either learnt the fine (and impossible) art of pacing or that I’ve reached a state of acceptance.

Two things have made a massive difference to my day to day living. Firstly I’ve plucked up the courage to call myself an artist and not wince when I say it. And secondly I’ve discovered podcasts. These two statements are connected. I can’t say for sure whether my artistic ability has improved, although I’m confident in saying it hasn’t got any worse. However my relationship to my work has shifted. I’m more interested in personal story than ever and more recently (the one I love and bed) have found ways to integrate my photography, writing and interview, for example Whoever Was Using This Bed .

Being ill for such a long time has intensified my contemplative nature. My love of podcasts has a direct link to my social isolation. On better days I go for what I call a local ‘photo potter’ a camera in hand, headphones hon listening to On Being,Made of Human, Invisbilia or whatever I've carefully downloaded and curated before I began my walk. Story telling and story listening (whether in words or images) have become an integral part of my life in the last 7 years. Chronic illness brings with it a number of emotional hurdles. Lyme has gifted me with high end anxiety as a near constant companion. I first experienced depression after my parents divorced when I was 11 and it’s been a part of my life ever since. Luckily the treatments I’m having seem to keep it under control, that is until I have a flare and I can spend months housebound and often to bed.

Even though I live with depression and anxiety I believe I have a great capacity for joy. One of my greatest pleasures is found in human connection and satisfying my endlessly inquisitive nature. I never know quite where I get my ideas from. It rarely feels like I’ve made something up myself and more that it plonks itself at my feet and I’d be a fool to ignore it. As my love for podcasts began to develop I knew that I had a real craving to do another radio show. I just wasn’t sure what. I was clear about one thing - unlike my other show where I had two or three guests a show - now I wanted to explore the long form interview and have just one guest.

Two of my favourite, albeit somewhat gruelling, podcasts are Terrible, Thanks for Asking and The Hilarious World of Depression. The latter began as interviews with stand up comedians but has now expanded to other performers. Inspired by both of these shows I decided to talk to writers and from all disciplines about their experience and the result was The Two of Us, aired on Reel Rebels Radio.

Writing is home for me. I think you’ll find the writers here, Joelle Taylor Miriam Nash and S K Perry incredibly articulate and generous about their own mental health journeys. I decided to focus on both mental health AND emotional well being as I believe it’s like the flickering of a candle flame and most of us move from one to the other and back again throughout our lives.

I’m also interested in lived experience and intersectionality. Mental health doesn’t exist in a vacuum, it cannot. I wanted to create my own mini mental health awareness campaign and to include exuberance, survival and complexity. The three guests that have appeared so far have been fearless in their honesty and shared breathtaking work.

Living Differently- Making A Mess For No Reason

I was all ready to write about transformation or some other lofty approach to the fact that I've been pretty much, but not exclusively, housebound for weeks and am entirely pissed off about it.  It won't last for ever, it can't. I'm getting so frustrated that I want to punch holes in the sky, uproot trees, fight all of nature, my hair a mess and me all snarly and unforgivable. All this time and so much living still to be done. I'm sick and tired of lessons, of patience, self-compassion and being kind and tender with myself. I'm bored of the hundred tiny gratitudes that I 'm called upon to feel every day. I want to get my teeth in to something, and hard. This cloying exhaustion and obedience to the needs of my body has me broken and vexed in equal measure. Well - that was until I started writing about it. I know I won't shoo the feelings away just by penning a couple of paragraphs but it's good to know that I still have some fight in me, even now. And it was a simple phrase that set me off in the right direction. Making a mess for no reason is what yoga teacher Frances Lewes advocates for those of us going through the perimenopause. She suggests that we create a personal sanctuary where you can put up a do not disturb sign. Not shared and not entered by anyone unless invited. Space to moan and groan and rest and maybe when the energy comes, to be creative and make a mess for no reason. 

It wasn't by design or choice but that's what I've been given here. A small space all my own to create a riot in. As a close friend suggested the other day when I told her how overcome I was with tiredness and the feelings that came with it, 'let it rage' she said. And although I'd rather be working up a dirty sweat, getting muddy whatever way I can, I'm here in my cave making bite marks in everything. Just know that when you come to find me I may not be smiling and pretty but the remaining debris will be something even Kali would envy.


Living Differently - The Nowhere

It's six in the morning and I have had one of those broken nights where only the promise that nothing lasts forever keeps me going, not even this sleepless night. Upstairs the neighbours are partying, their laughter coming in waves. Then silence. And then the music, dancing and more laughter. It seems fitting that I am beneath all the celebration and joy overhead. Much like watching a loud plane break a clear sky with its flight and wondering where the passengers are going. A means of escape feels very distant to me right now. Being sick for a long time can feel like living underground, a life in the shadows where one is painfully aware of what is happening on the surface in the world above. Two weeks ago a miracle happened - I felt well enough to go out in the evening for two nights in a row. I met friends, some of whom I had not seen since before getting ill, and I looked and felt like a healthy person. It was the taste of freedom and the echo from my previous life that I crave constantly. However I was not out of the woods yet. A week ago I developed more new painful symptoms and a mysterious infection which medication just won't budge and have been bedbound ever since. I have been chomping painkillers like chocolates but they don't touch the sides. I am very afraid.

The constant trauma of being ill long-term means that each new symptom, each new facet of illness brings with it terrifying waves of anxiety. The questions swirl around my head will I get worse ? why is it happening ? when will this pain leave me ? what can I do to make it end ? As the panic escalates the answers are torturous - It will get worse, you will die a painful and lengthy death and there is nothing you can do.

The truth is I do not know what will happen. But even not knowing the outcome of my current state and that anything could happen, good as well as bad, gives me no comfort. I want to know. I want to know now that it will all be OK. Being present to feeling in the wilderness just heightens my fear.

Fear is a gateway to truth, if only we can listen to it. I am indebted to one writer who has helped me on my journey - this blog post by the esteemed Tara Brach sheds light on what we can do in such trying times. We can soften, we can let the grief and the terror have its place and we can feel the love and tenderness that is available to us. We can love ourselves.

It would be an exaggeration to say that I am experiencing the peace Tara talks about. However I do have a map and at least I know I am not alone. How many people at this hour feel the pain of not knowing the outcome or live with the prospect of a cruel future ? Millions to be sure. How many of us, when faced with the truth of our own mortality buckle ? To collapse when confronted with the harsh reality of our short time here, the fragility of flesh and bone, is an understandable response.

There's more. Now I know my feeling scared is human I can look further. One thing that illness has not taken from me is my inquisitive nature. I always want to know what the next question is, what else there is to learn. If I allow my starting point to be my legitimised fear and if I can be tender to myself in these moments I can then look behind the fear and see what it's preventing me from seeing.

At first it's grief. Oceans of tears for so much loss - beginning with all that I have lost since my illness began and then bleeding out like an inkblot to all losses, past, present and future. That hurts so much I can hardly continue my exploration. The fear rises again but something tells me to continue on my path.

Fear has stripped away every line of defence I thought I had. I am exhausted, sad and defeated. But wait - even as I write this, sick and tired as I am - I see myself as totally lost , stranded in a vast nowhere and very alone. This is it. The party people are listening to Stevie Wonder, how could I resent them their good taste ? I am alone in the wilderness listening to "You Are The Sunshine Of My Life" through the floorboards and a slight smile crosses my face. Another thought - what happens if, just for a moment, I loosen my grip and stand back and just observe.

Locating that I do and have always felt lost, estranged even in my own body, gives me some calm at last. I can say with certainty that I have never felt at home in the world. This truth brings tears of relief and quietens the fearsome chatter in my head.

This is where I am. I am nowhere. I do not know why this shocking revelation gives me comfort but it does. For a brief moment I touch my own nothingness. And I feel almost OK. If I keep touching the truth of the nowhere and the nothingness then the fear eases.

I can hear more talking upstairs. Someone has a lot to say, and loudly. And me ? I am in the cradle of this vast unknown space. I am held by the stars.

Living Differently - Making it Better

wod2 Despite all my protestations of self-enquiry I'm not that unusual, I want to feel better rather than worse, to see change happening without having to break my back doing it. Well, I say that but is it true ? If there's one thing this lengthy illness has taught me is that I am not the person I say I am, even to myself.

My old friend Kitty sent me a photo taken decades ago in a photobooth. She remarked how carefree we look. I've scrutinised my gaze seeing if I could find clues of a future me. Nothing, except my hair is much the same and I'm a little anxious, as ever. What stings of course is not how young we look but how carefree. Of course this is the order of things and the luckiest amongst us get to have at least some taste of freedom in their childhood. But I keep asking myself what happened, where has that open-ness gone ?

Chronic illness is a rattlebag of unwanted and much needed lessons. I say unwanted because I would much rather be happy without having to try and this sickness squeezes the juice of gratitude from you. Because, in the end, being thankful is the only way to live. Bitterness is not an option but I am drawn to its magnetic pull frequently.

Over the last 18 months I've played different mind games with myself. Distraction is not the preserve of those who are ill, but it is for those who are suffering. Better not to feel the pain than feel it, it can all get too much at times. And distraction, even for the mostly housebound like myself, can take many tempting forms from watching light-hearted entertainment to being online for hours, from obsessing over personal relationships to close companionship. It is not always a bad thing and sometimes it's a life-saver.

Sometimes the distraction is enough. But it doesn't always work and then I pick up my books and look for An Answer, a Buddhist or meditation practice that whilst allowing me to sit with my emotional and physical discomfort will actually make it go away. I realise that I swing between these two states - an absorbing distraction on one hand, and a frantic desire to find a liberating truth, an acceptance in my suffering on the other. I work so hard just to feel OK. Whichever path I take I always want to make it better, and fast.

Today, after another night of fretful sleep, I woke at 6am. My heart sank when I looked at my phone and calculated how little sleep I'd had. This is not unusual. I then begin to panic, think of how good health seems so illusive and then, often (my first distraction of the day) I go online and see what's happening. My idea of 'letting it be' usually means my lying in the cold and dark until I'm weeping with frustration and fear. This morning I wondered if there was another way.

I've just begun reading 'True Refuge' by Tara Brach. She talks about meditation as a tool to find the refuge we need and that it lives in all of us. A good friend of mine who has lived with long term illness for nearly 20 years says that Balanced View has helped her access this inner calm, and another tells me that CBT has help her question her assumptions and beliefs. And here I am banging my fists against the door of self-love and acceptance and not getting anywhere.

Like this morning when I counted the hours of rest I'd had, this weighing up of how good I feel prevents me from experiencing what is really going on. My preoccupation with 'making it better' means that I hardly ever get to enjoy the ride for what it is. What if there is no making it better, what if it is just what it is. What If I never get well (and the one thing I can count on is that I, along with all those I love, will die) ? This thought, from an unexpected quarter, gave me solace. If there is no better, no life without some sort of suffering to deal with, there is no worse. Of course this beautiful realisation is momentary but there it is, map-tacked to my brain when I feel uncertain again.

I look at the picture of Kitty and myself again and one thought crosses my mind. It's what my aunt said as we were in the hearse going to my father's funeral. Passing all the gravestones on the way to the crematorium she said 'Look at all these people, they all had their turn'. And it's true my younger self had her turn and this is my turn now. Not to suffer without respite but to be here and to be here now.

Living Differently - Terror in the Body

8241699797_777fb7e767_c This is a photograph I took a few months ago of my bed. The title, 'Home', will hopefully mean something to the thousands like me who live with chronic illness and spend a lot of time housebound. The idea for this blog has been floating around my head for some time but I was reluctant to put finger to keyboard and write it. So much of my conversations these days seem to begin with the phrase 'since becoming ill...' and if I was bored by this opening gambit I could pretty much be assured that others would be too.

I have a variety of diagnoses - Lyme Disease, Chronic Fatigue/M.E and Ehlers-Danlos Syndrome. On top of that I have lived with depression in varying degrees most of my adult life. Looking at this comely list I immediately sink in to shame. Although I know it's not my fault that this has happened to me I cannot help feeling I have been invaded by positive thinking body snatchers and should just pull myself together. Needless to say I would never judge others this harshly but there it is, the protestant work ethic leaking in to my daily thoughts and the idea that if I just tried harder I could magic myself well.

Thankfully I have learnt a number of techniques to counteract this tsunami of self-blame, one of the most helpful being a beginner's mindfulness. Even if it is for moments only I investigate my feelings thoroughly, where (if anywhere) they are located in my body and try to find words to describe the sensations. At that moment I become both the observer and the observed and it can give me a fleeting sense of freedom. But what really works is having a continuing creative process and, as I have written elsewhere on this blog, photography has been a bigger help than I could have ever imagined when I very first picked up a camera as a teenager.

2012 was a tough year. It is hard to describe the grieving process of becoming ill with no (immediate) hope of getting better. Everything changes. My life before my current state was not an endless fairground ride of jollity and excitement but I was unaware of how much freewill I possessed. Now my stamina and energy are so low I have become the flakey friend I often used to feel intolerant of. Every arrangement, from making my bed, having a friend over for half an hour, on bad days even cooking myself a meal - can be cancelled at the last minute. I live this new life in pencil, not pen.

Once I could earn my own living and as much as I would like to say this did not impact on my self-worth having to depend on benefits can make me feel infantilised. In short my independence, of both thought and action, was something that were so tightly wound to my identity that losing these to the degree I have feels like a living bereavement.

I am homesick for what I now feel is my 'old life'. Even though I know I am romanticising a past which almost certainly did not exist the way I paint it. I came to realise that my experience of depression was a help to me. I had already encountered such feelings of despair, ones I thought I would never flee but somehow miraculously did. I knew this landscape well, how utterly convincing it was that there would be no sunlight again after the dark night fell. Also, and I cannot emphasise this enough, therapy helped. Therapy really helped.

I had a hunch there was a through-line in my life experience. That's where I got the title of this blog. I have always been scared, on some level. Sometimes I have managed to muffle that fear with frantic activity, over-eating, sex, or any number of fleeting distractions and encounters. Now I live with an illness with an unsure prognosis, in a country where benefits for the sick are being eroded and, for good measure, having to move out of my beloved home of 20 years plus, fear is not something I can bury any longer. The foundations really are crumbling.

But this is not new. I never felt at home in myself, or to the degree I wished for, in the world out there. I have always been afraid of something, of a future where the sky falls, of people I love and depend upon dying, of not being able to survive. And although there are many days I hate my illness with an acidic intensity I realise I also have a begrudging gratitude for what it has offered me. I no longer have to wear a mask. It has been torn from me and I can now face the terror. There is no where left to hide. And this, at long last, is where I begin my journey.

Living Differently - Platinum Heaven

In an episode of Frasier - brothers Niles and Frasier get an invite to an exclusive health spa. They are contented and smug until they find they have not been let in to the gold members zone. Finally they find a way in only to see that there is a platinum door - forcing this open they end up on the roof with the rubbish. The message here is about being where you are and finding contentment with that. And, of course, that our search for a 'better' sort of happiness is illusive. Since last autumn I have been living with M.E/CFS. This has meant I have had to draw on inner reserves that I did not know I had. I've also had to ditch fantasies of a gold or platinum member's zone. And for me that means a busy creative working life, much social activity and a freedom I took for granted. It's also meant I am learning to anchor myself to the moment, however challenging that is and a lot of howling at the moon when all else fails. Acceptance is a tricky one, either one fights the truth of one's circumstances or one reluctantly surrenders to life as it is.

But this experience has taught me a great deal. I would be lying if I said I was grateful, I'm still very much in the angry grief stage of this process. What I do know is how important humour is. It is the salve to heal all ills, even ridiculous ideas of a platinum heaven.


Living Differently - The Mirror

I still get somewhat embarrassed mentioning the fact that I am sick. Shame can creep in pretty quickly and I feel I should apologise for not being fit or energetic enough to take part in a more active life. But thankfully that's only part of the story. Perhaps this is an indication that my thinking is more about social conditioning than it is about my personality. It's easy, for us all, to get the two confused. Luckily I have a stubborn streak – when something needs to be said I will not shut up, especially when the gauze of silence hides the truth. And it's this that prompted ‘Living Differently’ - a series of articles and interviews focussing on those affected by chronic and long-term health conditions. I'll start by something that we all have in common and that's sex. Or more precisely intimacy, because even if we are not involved in a physical relationship it's a rare person that can live without closeness and contact for too long.

I had a conversation with a friend about intimacy and chronic illness. He has written an intelligent and refreshingly open article about chronic pain and sex. I read it and everything changed. One of the things he talked about was about feeling less like an adult and more like a child when he has a flare up. I know that well. Although I often spend days on my bed in a state of undress (or more precisely pre-dress) I don't feel like the temptress. I feel I am living outside my 'old life', one where I felt I had more choice and more freedom with what to do with my body and when. It's hard to feel sexy when you are exhausted and anxious, when the body you once knew does not behave in the same way.

I've stopped wearing make-up, stopped dressing up and my main concern is how cosy I feel. This body has medical appointments, it has treatments, it does (thankfully) get hugs. It doesn't go dancing or swimming or cycling anymore, it does not run for buses. I realise I have to find a whole new way of being sexual, one that involves persistant and gentle affection, one thats emphasis is on sensuality rather than hitting the high notes at all hours. And sometimes, I hate to admit, I just don't feel pretty enough in myself to get laid. Perhaps I have to find a whole new pretty too.

Vulnerability, freedom and exposure are all part of sexual interaction. The language of sex, at its best, is one of communion. But for now the orgasmic release feels too extreme at times. As much as the rush of endorphins are healing the intensity feels frightening, like a freefall parachute jump, when I already feel like I am falling in to the unknown unaided. Now I have, to some extent, lost the sort of control I used to have over my body 'abandon' feels more scary. I feel physically vulnerable a lot more of the time and so that also plays a different part in my (sex) life now.

This morning I woke early and thought of Steve McQueen's recent film Shame. In it Michael Fassbender plays Brandon, a sex addict. His life is ruled by one alienating sexual encounter after another. When he finally meets Marianne (played by Nicole Beharie), a woman whose company he clearly enjoys, he takes her to a lavish hotel. The same hotel he walked past previously where he glimpsed a couple having sex against one of the building's large glass windows. In the hotel room he cannot perform sexually with Marianne and she leaves. Brandon is then seen having sex with a prostitute, against the window, re-enacting the scene he had witnessed earlier. The glass is all about the surface, about looking and not being seen. It's also about hiding behind something that's transparent. I think that's what spectacle does, especially sexual spectacle - porn - it offers a public place to hide out.

As much as being mostly housebound with illness is about invisibility, it is also about grief. I wanted to write about sex but I have ended up here, trying to work out what this new world has given me. And what is has taken away. If I look closely at my life before I got ill, I know how visible I have wanted to be. Sex was my way of being seen and being validated. And when I think of my more extreme encounters it was my way of hiding out. I don't have that option any more. It is both a blessing and a trial.

What's left is the constant longing for closeness. Friends who also live with chronic illness say the same. Their bodies may not always be robust enough for physical activity but the need for tenderness remains. It's no coincidence that so many of us have close relationships with cats, those small-pawed creatures who demand to be stroked and held, whose needs so clearly mirror our own.

I had hoped to write something about loss, how being ill has robbed me of the sexual dynamism and the relaxed intimacy I was used to. Instead I have unearthed a different truth, one I would not have faced so clearly had I not become sick. There is not one story, there are many and each are different. This one is mine.

Picture This - Agnes Meadows 'Thaw'

Some fantastic writers have responded to a portfolio of my recent photography for a project called Picture This. I am overwhelmed by the beautiful work I've received. I have also worked with photographer and film-maker Craig Thomas, on a short film entitled Still Life, containing a selection of these images. Agnes Meadows is a gifted and prolific writer. She also runs a great monthly event for women writers of all genres, Loose Muse. I'm really excited about her heavily gothic contribution to the project.

Agnes has written five books of poetry – You and Me, Quantum Love, Woman, At Damascus Gate on Good Friday and This One Is For You. She is currently writing a novel set in 12th century Constantinople with a woman soldier as the central character. Thaw

In moments of transformation, the process of change brings a burden of misery I cannot control. My shoulder blades are knived by the black burst of feathers, the prickle of subcutaneous wings ready to emerge. And where my mouth was, replete with words half-formed for song or velvet metaphor, now I am beak-pierced, my tongue sharp as thorns or holly spike.

My arms have disappeared entirely, merged in the sleek gloss of raven plumage, legs grown crow-thin, toes a trident of talons shadowing your booted footsteps with avian shrewdness. These petrel eyes gleam in carrion hunger, my gorge rapacious for the weight of gristle and sinew.

It is worse in winter when the ground is white and the days are short and sunless. So little time to feed, I am undone by your warm breath, the smell of you coiling in heavy folds across my breast and shank, your blood a graying broth that boils in your veins, thin filaments of deceit.

You do not see me hidden in the leafless trees, are deaf to my shriek of triumph as I swoop, wings stretched, glide and settle on your shoulders, begin my rapier encroachment of your soft neck to reach the core of living brain within. dawn melts my tracks in the snow, a proof of terror, a thaw of mutating species, bird to man come daylight.

Picture This - Sarah Butler 'January Morning'

Some exceptional writers have responded to a portfolio of my recent photography for a project called Picture This. I am overwhelmed by the beautiful work I've received. I have also worked with photographer and film-maker Craig Thomas, on a short film entitled Still Life, containing a selection of these images. Sarh Butler's writing has an immediacy to it that works perfectly with photography. In the thoughtful piece below she captures the sense of isolation that was my impetus for taking the picture.

Sarah writes novels and short fiction, and has a particular interest in the relationship between writing and place. Her debut novel, Ten Things I’ve Learnt About Love, will be published by Picador in February 2013.

January Morning

He might have opened the French doors for a breath of January air, to clear the room of last night’s red-wine-cigarette-fog, but she knew he’d gone. There was no point in following, but she stepped out, across the moss-stained patio, onto frosted-grass that gave up its sugar-coating to the warmth of her bare feet. The soil beneath though, that stayed hard and unforgiving. There was no point in looking, but she looked anyway, and when her feet were so cold she had to retreat, she sat by the window and watched the garden – splintered into pixels by her tears.