The One I Love – Exhibition and Private View

Events, Living Differently Project, Photography

Scarlett publicity

I’m working hard on my new exhibition ‘The One I Love’ which explores the relationship people with long term invisible conditions have with their pets.

Where : Free Space Project, Kentish Town Health Centre, 2 Bartholomew Road NW5 2BX

When : October 23rd – December 14th

Private View : October 23rd at 6.30pm to 8.30pm

Hope to see you there !

Naomi x

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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.

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 – Who Cares ? by Will Hames

Living Differently Project, Other Lives

I invited my friend Will Hames to write about his experience as a full-time carer for his wife who has M.E.  Here’s what he wrote :

You start looking after somebody because you care. It’s a feeling, an emotion, and in the beginning all the work you do is driven by love. For me, several years down the line, the word “caring” has taken on a different complexion all together. It’s not something I feel any more, rather it’s something I force myself to do because ceasing to do it is unthinkable.

There are still many moments of tenderness, but they are heavily outnumbered by flashes of irritation from both of us and long periods of mind-numbing tedium. Minor inconveniences which I would formerly have taken in my stride and rated unworthy of even a mention assume ridiculous proportions now.

She used to be an actress, full of bounce and bright ideas, before M.E. started to creep up on her. I used to have a well-paid job that involved frequent foreign travel and a lot of intellectual challenge. We both worked hard, expecting to keep our careers on a steady upward path, not knowing that we had already peaked and the only way was down. When I started to fall asleep at my desk, my mind blank with fatigue from nights spent helping her keep afloat physically and emotionally, the end was inevitable.

As my wife’s world has shrunk to the space within four walls, so has mine, and but for the fact that I have the very occasional opportunity to go out for a few hours as a comedy poet, my entire contact with the outside world (apart from a little banter with local shop staff) would be via Facebook and our doctor’s surgery.

There is a haphazard, arbitrary quality to our existence these days, with the need for regular medication as the only really consistent element in any of it. Outsiders see the state of our lives and wonder why I, as the stronger partner, don’t insist on imposing some proper structure on our days. It sounds weak and flabby to say that my patient calls all the shots according to how she is feeling from moment to moment, but that’s the fact. Sleep patterns? What are they?

As carer, it is down to me to make all the concessions and compromises: to fight with an invalid would make me a tyrant and a bully, so I allow myself to be tyrannised and bullied because I am – supposedly – big enough to take it.

But that’s just my own situation. Talking to other carers has shown me that there is a whole spectrum of power/dependency balances out there. Some people whom I might be tempted to envy because their patients are docile and biddable, envy me for having a patient who knows her own mind and can articulate her needs.

All the same, there are some common elements. For a start, neither invalid nor carer will have volunteered or had training for their respective positions. Both parties would rather be doing something else.

And neither one can look hopefully towards the future, particularly in respect of the question, “Which one of us will go first?” A carer without anybody to care for is in a better position than a suddenly-lone invalid, but at least the invalid has some claim to consideration from the rest of the world. The ex-carer has no status at all, and if he has spent decades going quietly stir-crazy in a role that is no longer relevant, his chances of fitting back into the world productively are pretty slim. Nevertheless, I hope I’ll be the one who survives, for her sake and for the sake of our children.

Every once in a while, somebody will remind me that I’m doing a valuable job, on duty 24/7 and saving the welfare system oodles of money (at least, while we still have a welfare system to speak of), but these reminders do not come nearly as often as the slurs and persecutions aimed at the disabled and people like me, who make a “life choice” to stay at home, ostensibly unemployed.

My wife draws benefits because she is unable to work for a living. I also survive on those benefits because, although I am perfectly capable of holding down a job, I can’t go looking for one. If a Daily Mail reader came to our house, he would probably label us both as benefit scroungers the moment he walked through the door.

We have a big, flat-screen TV. That says it all.

Will Hames has been a carer for more than twenty years. He keeps his spirits up by writing silly poetry. Every once in a while, he says something wise, but he insists on being careful not to make a habit of it.

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.