Living Differently – Holding the Gaze

Living Differently Project, Photography

Wall of meBack in 2013 I did an online photography course with Vivienne McMaster. Vivienne’s work encourages her participants to “discover tools that will help you to cultivate a relationship of self-compassion both through the camera and in your every day life” (her words from the website), the premise being that self portraiture can help us look at ourselves with love and lessen the hold of self-criticism. It can be a radical act to show up in front of the lens and direct that gaze, that multi-facted honest gaze towards our most bullying critic – us. We can feel the earth shift when we direct a look of love towards ourselves instead.

A year before this I began using photography as a way to deal with living with chronic illness. After feeling trapped in my body I felt an enormous sense of relief capturing what was happening to me on camera. I was both the photographer and the subject and that allowed me to explore my feelings in depth without having them overwhelm me. The camera was a tool for both investigation and validating my experience. I began my self-portrait journey wanting to record the truth and the last thing I wanted was to ‘play nice’ for the camera. As I continued my work with Vivienne I learnt how to enjoy being in front of the lens. I found out that I was a worthy a subject as anyone I had turned my camera towards.

A few years have gone by and I’m still adapting to a life I did not choose, still looking for  my own story in the midst of change. The past 6 months have been very tough and I’ve got puffy and swollen in my face. This shouldn’t matter, but it does. In an attempt to self-validate I forgot one thing – the constant passing of time. When I look at the photos above, all taken and processed on my phone, posing, pouting and beaming – I can also see someone trying hard to pretty herself for the lens. Looking at these pictures something is missing. Where is my body ? It’s no coincidence that I live with an invisible illness.  I’ve managed to hide myself from myself.

Looking  again I can see that even the most processed of them are a part of my story. Some days I let my vulnerability show, others I shine with joy and then there are the times when I feel the only choice I have is to ‘say cheese’, hold my gaze and face the world.

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Living Differently – Nothing is Beautiful

Living Differently Project, Photography

A week ago my solid, kind and adored therapist finally retired. I’m still numb from the ending of what has become one of my most important relationships to date. Every therapeutic relationship is different and ours evolved in to something far away from text books and theories and in to something imaginative, philosophical, supportive and ultimately saved my life more than once.  A few weeks before our final session we were talking about photography. I mentioned the work of Khalik Allah, whom I had only just discovered. I broke down in tears recalling the images of these New Yorkers – tough, broken and on the edge of survival. What struck me most is their vibrance. Yes, there’s suffering here, addiction and poverty but there’s also tenacity. That the photographs are in colour, deep saturated flourishing colour, spoke to me about the vitality of the human spirit. And that’s why I wept.

‘All photography captures life’ I said ‘Even if it’s no longer there, it’s the evidence that it has been. From the sky at night to a lamp on a table, to the people in the photographs, it’s all about life. And because it’s all about life it means that it’s about beauty.’ I thought about the photographic projects I’ve assigned myself since becoming ill – from taking pictures of the small and mundane, snapping the shutter at the same subject matter over days or weeks to my most recent project ‘The View From Here’  (taken entirely from my bed during this recent crash). ‘Even nothing is beautiful’ I said.

My therapist smiled and repeated ‘Nothing is beautiful’ and in that moment we acknowledged both meanings inherent in this statement. The way I had originally meant it – even nothing is beautiful – and also remembering the despair I had taken to many session where I would arrive joyless and sad believing that there was no beauty in myself, or the world that I had access to. Nothing is beautiful, not this moment or any moment to come. But now my wish is that by stumbling on these words I can find moments, however short, where both the hope and hopelessness can live side by side. And that there will always be colour even in the most brutal of times.

Blooming

Living Differently – Heartpoint (for Catherine)

Living Differently Project

I’m still getting over my most recent energy crash. It takes a lot of self-discipline to care for myself this much. And I don’t mean the physical side of taking enough rest or eating properly but the emotional component. That one I find pretty tough. For every step I take towards self-compassion a voice rears up in my head reminding me, with great authority, how indulgent I’m being to take it this easy and that I should be doing more.  It’s an hourly battle not to be crushed by this inner dictatorial voice and I find myself losing the ability to see what I need with any clarity at all. To feel so in the wilderness with nothing but my own punishing thoughts for company can be a pretty lonely place and I begin to wonder if I’ll ever find my way back home. Now I’ve written this down I can see it does sound rather melodramatic. It’s also the truth.

Chronic illnesses have wavering symptoms, ranging from just about nearly OK to absolutely bloody awful and if the ghastly period is unrelenting the fear can hold you pretty tightly in its grip. The whole process of going through a crash, relapse, or flare is extremely traumatising. After the metaphorical storm has passed I find myself wincing at even the tiniest drop of rain. I know I’m not alone in this and that the unpredictable nature of long term sickness can be very anxiety producing. This is perhaps why so many of us turn to meditation, buddhism, a spiritual practice or a creative outlet to aid our navigation through these rough seas.

So, it will be no surprise to hear that recently I had given up on magic altogether, even in its most human form. That was until my friend Dina invited me over to her studio for a prolonged session of recuperative yoga. It’s not the first time she’s done this and I’m always grateful. The session lasted over two hours and Dina put me in a series of prolonged resting postures on mountains of bolsters and blocks, covering me with cosy blankets until I drifted in to that safe and hypnotic space between waking and sleeping. She is an expert at arranging the equipment and I often felt like I was floating in space, momentarily free of the burden of gravity.

One thing that struck me was Dina’s attention to detail. Even my skinny wrists were supported by rolled up blankets. We often think of holding on as something we do with our hands but our wrists can also carry a great deal of tension, the support I had enabled me to let go at last, to take flight. I decided to find out what mysteries our often neglected wrists held and discovered the location of Heart Point 7  described as an acupressure point to quell anxiety. It also served as a reminder to me that when we are feeling our most fragile the seemingly smallest things make the greatest difference and hold the key to our emotional sanctuary. I’ve called this heartpoint to highlight that even in our most difficult times there are clues everywhere, tiny doorways to love and tenderness and it’s in the silence and stillness that they are revealed to us.

NB: This post is dedicated to my friend Catherine who is in the middle of a storm right now.

Living Differently – The Nowhere

Living Differently Project, Personal Journey

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 – Giving Up Normal

Living Differently Project

I’ve been struggling with getting down to writing and taking photographs (the latter always being my refuge when the going gets tough) for a while. Shame has been like a gargoyle with its nails permanently in my back whispering cruel nothings in my ear and nothing has felt right or good. My experience of living with chronic illness continues to be both terrifying as well as a total and utter bore. It still amazes me that on my worst days, the ones where I find it hard to get out of bed or leave the flat, I can still find a surprising amount of energy for determined self-loathing. A lot of it evolves around what I think I should be doing, what I used to do and what a miserable and useless person I am for not being able to live life the way I used to. The ‘Should Monster’ comes to haunt me on my most fragile days telling me that even ill I should be jolly, invincible, tirelessly creative and above all not ever make a fuss. As a good friend said to me recently ‘Sometimes being positive is just not the appropriate response.’ I know she’s right of course but daily I want to live ‘normally’, whatever the heck that actually means.

It’s Saturday night and I’m in my pyjamas and a fleece dressing gown that feels like wearing a top to toe hug from a teddy bear. I’m listening to some Latin Jazz and have finally got down to letting my fingers dance over the keyboard. So, what happened to finally get me here ? This afternoon I spent a few hours in some gentle and generous company at TheWhatWorks residency, a creative adventure utilising the Open Space model. Put simply, in a creative context, this allows for flow and participants are encouraged to move from activity to activity if they want to, (or stay in one place if that works for them). Nothing is wrong. Anything can happen. That in itself is liberating and goes against a lot of the hierarchical teachings we have had bestowed on us since childhood. Because my energy is low I could only stay for a few hours but it was well worth it. I learnt about rhizomatic theory which, in a few short moments, was like coming up for air after living for years underground.

I cannot pretend I know anything about the complexities of this theory however the image of a plant’s roots spreading horizontally just under the top of layer of soil struck a chord and reminded me that not everything has to be about the giddy ascent Capitalism preaches. That, and my ‘go to’ healing spice as Autumn approaches, is the much-loved rhizome Ginger, had me thinking that perhaps giving up ‘normal’ was the way to get the monster off my back at last.

As I have said I’ve been feeling pretty appalling recently. Health and housing issues have destabilised me. At least these current roadblocks have allowed me to observe something about myself – when I am at my most vulnerable I am most inclined to punish myself with ideas of conforming to a fictional ideal. Here’s my list of what living with long-term illness continues to teach me, even as I resist it. And why giving up ‘normal’ can be a great thing to do if you feel like a hair-raising skydive in to the unchartered parts of yourself.

In fact that’s the first
– I can’t shy away from myself. Illness strips me to the core. I am beginning to find out who I am, at last.
– And that has had a massive impact on all my relationships. Some have withered whilst other relationships have grown and become more intimate. All of them have changed.
– I am learning that sometimes the only response is to do nothing, that I have to ‘let it’ whatever that is. Even the agony is more tolerable if I stop looking for ways to fix it.
– The outcome is always uncertain, we all live in the ‘I don’t know what the future holds’ however much we try to run from this.
– That whenever I trust my inner voice things are so much easier to deal with. In fear I often lose contact with this voice and everything goes haywire.
– And what does my intuition tell me – pretty much always the same thing, to be kind and gentle and forgiving of myself, even those parts I feel I cannot forgive. It says love myself and to remain present.

I cannot state this enough. Be kind and gentle to yourself and remain present, always.

Cause and effect