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
Back 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.
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.
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.
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.
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.
I don't know how many blogs and YouTube clips I've seen now of people, like me, living with chronic illness and telling the world (or the part of the world that will listen) Just How It Is from their bed. I'm about to join the ranks. Today has been pretty awful and for the first time I'm blogging from my phone lying in the dark with the light from this palmed sized screen lighting up my words. I feel far too sick to lift my head from the pillow and even if I could summon the energy to take a walk around the local neighbourhood I'd only scare my fellow residents looking very much like a wan Halloween ghost with a time-keeping problem.
I don't know if I believe in anything beyond the comfort of these four walls right now. Although I do know I've felt steam-rollered by sickness before and regained enough energy to take tentative steps out in to the world again. I'm hoping for a gentle ascent back in to a less than frantic activity soon.
Before I began writing this I had a vision of a cartoon that I don't think actually exists anywhere outside of my fatigue fuddled head. There's a plane and God is there (the wonders of imagination mean that you can insert any version of God you wish to here) ushering a line of parachutists out in to the gaping sky. One is wearing a parachute with the word 'Life' emblazoned upon it in tall confident letters. Just before the jump God pats the parachutist on the back saying "Watch out, it's quick !". And that's pretty much how I feel, Woody Allen sums it up much more succinctly here.
So here I am in the dark almost bent double by the feather filled tower of pillows I am lying on and, if it weren't for my writing this, I'd be doing nothing. But would I really, my thoughts running like a high speed train, my tireless preoccupation with myself even when I barely have the energy to roll from one side of the bed to the other.
And then -
I breathe and in that tiny pause between in-breath and out-breath I glimpse the light from the hall shining through the transom above the door, hear the slow march of my alarm clock ticking and this thought occurs to me - what if I can just let the nothing be as it is, what if I can see these moments when I am too ill to participate in what life offers as quiet moments of clarity, and the nothing that I flee from as an illuminated bridge between life and death. If I can stop fighting (even for a micro moment) won't I be better prepared for when the infinite finally comes to take me away ?
In my last post I wrote about what it's like to live with terror. By either some cruel coincidence or an uncanny sixth sense that fear has now been made manifest. After some disquieting and unexplained symptoms I have been fast tracked to see a specialist to ascertain whether I have bladder and/or kidney cancer. I had my first appointment this week and am awaiting more tests. I do not know how my body, already pretty torn apart from Lyme Disease, could survive cancer let alone surgery and chemotherapy. I am, as you can imagine pretty blown apart by the news. A friend, who was also diagnosed with cancer whilst pregnant summed it up perfectly. She said that I was like Schrödinger's cat in that I both have cancer and don't have cancer simultaneously, a perfect analogy. So here I am waiting for the medics to open the box to tell me what the next step is. I wonder if there is a peace to be found in this space of both living and dying at the same time. Although my current experience is particularly acute, this is true for all of us mortal beings - from budgerigars to ancient turtles, from the tick that bit me, sequoia trees and even the disco ball stars shimmering overhead - our time here is limited but we are still alive to it all even though we won't be here for eternity.
That's not all. I have been gripped by such overwhelming panic I can hardly speak, which is pretty unusual for a devoted chatterbox like myself. It feels like that the words themselves will betray me, the box will be opened too soon and confirm that I will die the ugly agonising death that I have always feared. And it certainly could be that way. It could also be that I find that there is another cause entirely and I will retreat back in to my Lyme Life momentarily relieved. One thing has struck me in all of this is that if isn't this current challenge that brings me to the cliff edge of myself something else will. I am a fearful person and until I can soothe that fear in myself there will always be something to drive me here, clinging by my fingertips in an unforgiving storm.
A lot of people have been loving and supportive. Some of it has been eager but misplaced, encouraging me to be positive about this ordeal. Sincere and well meant as it is, it doesn't help. Any chance of stoicism has fled like a cat from fireworks and I am left feeling like I have let the side down for not being more measured and optimistic in my response. However my usual default of examining all my feelings and giving them expression until they disperse has not worked either.
So what has ? My neighbour gave me a Reiki and crystal healing treatment the other day and it helped enormously. I don't know why but some of the strangulation of impending doom lifted. And, it may be a shock for those who know me well to hear this, I began to to ask for help from a non earthly source. It was my neighbour who said she summoned angels to watch over me and I immediately thought of the film 'Wings of Desire' where angels, unnoticed, watch over everyone especially the hopeless and despairing. I don't ask specifically to be made well all the time, although of course sometimes I do, instead I mostly ask for peace for myself and those close to me during my current trials. I don't know if it's just by putting my faith in something that I cannot see is what helps, or that there really are angels who are there to love and protect us all. I don't know if it matters really - the thought that my welfare may be of concern to the cosmos is enough to quell those terrible tides of pain and worry.
That this is a life, my life, as it is.
And that I am loved.
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.
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.
