Living Differently - Giving Up Normal

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.

Living Differently - Naturally Stable, by guest blogger Jocake

I have been meaning to write a post for months now for the 'Living Differently' series, a project where I explore life with chronic illness. My head is a bit of a tangle and I'm very much in that part of the process where all that glorious chaos just has to be how it is for now. Since becoming ill I've met a number of pretty exceptional people. One of them is my dear friend Jocake. Jocake is funny, wise and has the rare ability of true kindness and understanding. Below is a note she posted on Facebook. I found it so moving and so necessary that I asked if I could repost it here on my blog.

"I was thinking yesterday about strength, and how it is seen in our society, and how we are trained to see it, and ourselves. We are, as we all know, shown images all day of what strength, achievement and beauty looks like: an unachievable for most, if not all, 'perfect life' where financial security, family, house, career and looks are all in place and providing us with happiness. Having just turned 40 myself i have recently experienced a deluge of emotional and mental tyrants in my head, telling me what about me isn't beautiful, isn't strong, hasn't achieved, just because I'm 40 and in the life circumstances i am in. It lead me to think about how illness is portrayed in modern culture, and how the people with illness are seen, and my actual experience in meeting these people and being close to them.

It's clear to me that people with illnesses are seen as weak, or glorified as fighters. Much as I have huge respect for those who are disabled and in the Olympics, advertising still encourages that model of strength where you have to over come something and achieve something great to be seen as strong, strength is not seen in being physically or emotionally vulnerable.

Now amongst my close friends I know at least 8 people or more who have been dealing with a long-term boring annoying debilitating illness, and of course i too have been ill for 17 years. It fluctuates, irritates, bores, exasperates and debilitates us. But what I have not seen, in any of these people, is weakness.

In my experience, being ill for 17 years is fascinating. There is a quality I see in myself, and in others in this position, that is tangible. I think people with illnesses like M.E can be seen as draining, victims, sad,'brought it upon themselves, weak. But when I'm with these people I see a whole different story. They are all funny, good company, incredibly compassionate, bright, have a huge care for the world at large, creative, insightful, bloody good fun, positive, and they have this quality that I can't put my finger on. I think what it is a connection with the true strength in all human beings that they have had to find due to their circumstances.

When you are stripped for years from the very things you are told will provide you with happiness where do you turn? When you can't have children, work to create financial stability, use your strengths gifts and talents and build a career, then where do you go to feel ok? This is what I see in all the people I know who are dealing with long-term health issues, a humility, a deep strength that is bendable and allows for all states, what shines through them is this: the essence of life itself.

This essence of life is what i see shining through all humans. It's in every one of us, life. Life is naturally stable, beautiful, and has already achieved life therefore is stable and happy as it is. This is what we are all made of, but we are not encouraged to look to it and seek its natural validity. Illness pushes you to this, and this is what i see shining through all my friends who are faced with everything you cant avoid.

It is a redefining of strength for me. Strength, beauty, achievement is in the gentle strong shining of life through each human being. You cannot avoid your strength, your beauty, your natural ability, your gifts strengths and talents, your stability. It is you, as you, always."

Living Differently - Learning Kindness

Nearly everyone has a default, a go-to place where they think they can hold off the tide of inevitability. Sometimes it is an addiction to being intensely busy, for others it's running as fast and as far away from any uncomfortable feelings it's possible to go. Mine is wanting to know, hoping that if I ask the right questions I'll get the right answers and then find a way to dig myself out of whatever mess I'm in. Even if that means I'm using a teaspoon not a shovel. Many have called me over-analytical and there is some truth in that. I know that my constant state of enquiry has allowed me the illusion of control. But what an illusion. It's also meant that when things have been really tough, like now, I can tell myself I am learning something - I may be suffering but I am not stupid !

Long term illness has got me a questioning many things. Why am I ill ? How can I can better ? Will I ever get well and, perhaps the most enduring, How can I live this way ? My experience of illness so far is one of dealing with one loss after another. Loss of health (obviously), loss of independence, loss of a working life, loss of friends and a social life, loss of travel. The list is long. And as much as the grief hurts it is something I find easier to live with than the grating anger and resentment for feeling so left out in the cold. Needing to know why, or what to do with the 'why' doesn't help me one bit.

A friend suggested I listen to Kristin Neff who calls herself a 'self-compassion evangelist'. What I find most interesting about her work is that she encourages self-compassion even with one's self-critic and the most self-destructive things we tell ourselves. Hearing this for the first time was like living with air-conditioning your whole life and suddenly have someone open the window and breathing in real air at last.

Before this any self-compassion exercises had been limited to a wholesome meal, a bath with essential oils, candles and the Bach Cello Suites. I may have managed to squeeze in a cursory acknowledgement that I was not the only one in pain on the entire planet, but with no real sense of connectedness. I lit more candles, cried more tears hoping the gentle music would save me from my most uncomfortable feelings. But I still felt bitter, still felt eaten up with such a roaring anger it is a wonder its fires hadn't burnt London for the second time.

It is only in the last few days, when I've been feeling angry, hurt and ashamed that I decided to share my feelings with a few friends online who also live with chronic illness. My friend Toni Bernard reminded me that 'there is no end to how much self-compassion we can give ourselves' and that even what I considered the most distasteful parts of myself deserved my love and attention. It seems all so clear written down but I am only just learning kindness.

The essential oils, the cut flowers, the warm bed are much needed accoutrements however this is only start. For years, far pre-dating my current state of health, I've fought against what I considered the most ugly parts of who I am. I wanted to eradicate those feelings. Years later I am still the hyper-sensitive, volatile person I always was. And perhaps, just perhaps, this illness has led me to a place where I can begin to accept and love who I am, every part of me, even the part who carries a big stick and dreams of torching everything.

Living Differently - Asking for It

It's a Sunday evening and apart from looking out of the window I have no idea what the weather really felt like today. I've spent all day in bed and the hours have passed in a blur, as so often happens during the more ragged times of my illness. It occurred to me that the friends who acknowledge my health, and all that comes with it, enable me to feel less like an invalid and more like 'my old self'. When my poor health is validated then that 'self' no longer needs to hanker for attention and other parts of me can get a look in.

No one really wants to be ill. It's a whole new landscape and takes time to get to know this new terrain with unfamiliar customs and ways of being. One of the most challenging aspects is learning how to ask for help. I always thought I was good at this. I'd lived on and off with depression for years before my physical health went belly up so knew what it meant to navigate my way through professional and personal support in order to get my needs met when I could not meet them myself. But this is different, sometimes those needs cannot be met. Yes I can find ways of soothing and comforting myself when I am feeling my worst (in body and in mind) and I can reach out to others when I'm desperate but some days nothing works. There is no fixing it and that puts an enormous stress on all sorts of relationships.

Small things do make an enormous difference - help with cleaning, a friend coming over and sharing a conversation and a cup of tea, packing my belongings for my upcoming move - all this is vital and I'm eternally grateful. The problem is I have to keep asking. As long as I remain debilitated physically (and emotionally at times as well) there is no end to my list. And that can be an appalling infantalising state to find oneself.

Writing this I realise there is another way. Yesterday a singer came over with chocolate brownies. A kind and generous woman I don't know well but someone, who in her words, 'likes to help people'. I lay on my bed and it's hard to find words to describe the joy I felt as she sang what can only be be described of as a daytime lullaby. When she left she thanked me. I was as touched by her gratitude as I was moved by her singing. It made me realise that giving and receiving really are part of the same package. If there is someone out there who likes to help perhaps this illness can teach me how to surrender to being helped, to get to enjoy it and finally discard the struggle and battering of self-judgement.

Bringing Art Home - an interview with photographer Supriya Sunneva Kolandavelu

I decided it was time to interview some photographers and find out what drives them to take pictures, Supriya Sunneva Kolandavelu, who brings to her work such a fresh and generous eye, talks about her own photographic journey.

What or who got you in to taking photographs and did you ever study it ?

My wonderful friend Craig Thomas, who is himself a self taught photographer, is a big inspiration for me. I borrowed a camera from a friend and later met up with Craig after getting Skype counselling on how to work with a camera. Craig was fast and eager to get me on track. He shared with me his wisdom about photography as well as taking me on several 'at home with Craig and on the road' workshops where he taught me what he could get into my stubborn mind. From there I was able to practice photography on a professional level. I have always had the eye but perhaps lacked the instrument to practice it until the last two years.

What sparks your imagination and inspires you ?

I think influences are all around me. I do believe that not only do I detect happiness through my own happy heart, but also evoke situations around me in which mirror my present mode, being happy. The same goes for sadness. When I feel sad and uncomfortable, I will in the same way provoke situations around me, so that I can have the space to express that feeling. I think that in order to express sadness, and relate in that way to other people's sadness, I have to allow the sadness to take me over. If I want to provoke happiness, I will have to provoke it within myself first.

What are you working on now ? I have a vision for creating projects that are produced by the public. I like co-operation rather then competition.I want to bring art home and encourage everyone to invest their time in healing themselves and their environment. I think sites like kickstarter or indigogo.com provide interesting possibilites in terms of getting a budget for a project, along with other sites where people exchange their skills for supporting their (and others) projects.

What have you learnt with your photography over the last few years ?

Being young and quite new in this area, the last couple of years have shaped me in many ways that are still appearing. Being behind the camera teaches one to remove oneself a little more, and to watch without interacting. That in itself has been a great lesson for me.

What matters most to you, how a photo looks or how it how it makes you feel ?

I get caught up in the moment, forgetting time and everything around me. When I realiced that the most beautiful things I have witnessed have happened when I was fully present I started wondering where these wonderful things came from. Nothing else was occupying my mind, for the moment to be good I have to be in it. I have to forget everything else but this moment, and notice it for what it is. If I can see it, it can be beautiful.

Can photography heal ?

I believe human feelings are connected up like a wire. I believe we have within us the healing power in which we tend to seek elsewhere, as all art comes from within.

How well can photography depict the truth and/or expand our knowledge of a world we do not know and have not seen ?

A great artist requires a great spectator. Wisdom comes from going away from oneself, only to come back to see what was always there but lacked an eye to look through.

Finally, please complete this sentence 'I love taking photographs because... I love taking photographs because it provokes a stillness within me and with an attentive mind, listening to my soul.

Living Differently - Intimacy

Living with long term health issues affects everything we do. And this includes the most intimate aspects of our day to day living. I talked to some close friends about how illness had impacted on their sex lives. People were very generous in their responses. I've changed the names of the interviewees due to the sensitivity of the subject matter.

Sam is in a long term relationship.

"Our relationship started before I became ill and we have been together many years, the majority of which I have been unwell. It has changed so much in terms of what we can do as a couple and what we can enjoy together. It is hard to be spontanous or find anything new or different to do and we really just spend time quietly together at home, with the occasional trip out for a couple of hours. I think generally we are a strong unit and have adapted quite well to this way of life, but it does cause extra pressure and responsibilty on my partner and I don't like seeing the effects of that stress. My partner was very understanding and supportive from day one, despite our relationship being relatively new at the time there was no hesitation in taking me and the illness on, though neither of us had any idea it would be such a permanent feature in our future lives.

I live with my partner. This has huge benefits for me in terms of having company when I need it and being cared for. It can be hard seeing how much their life has to change and be limited to accomodate my needs. I find it helps to be cared for and loved by a partner, rather than living with a parent. I feel less childlike in my needs and more equal and appreciated for what I bring and offer to the relationship.

It has changed our sexual relationship a lot, as before I got ill and early on when I was less severely affected, we had a great sex life. This got harder and harder to fit around my illness and we started to plan it so that I could rest in the days before and after, but it took a lot out of me and caused me a lot of muscular pain and exhaustion. Over the years it has become less and less frequent until maybe a year or two ago each time we tried it, the act itself became too painful for me to continue past a certain point.

My partner is not happy to participate at all on the basis that we both do not both get the same amount of pleasure from it. I still experience myself as a sexual person and I am still grieving the loss of my ability to properly orgasm, which was something I enjoyed very regularly before. We are still physically close and are intimate, but I miss that intensity and giving my partner such pleasure very much. What closeness we do have is very comforting and loving and helps me so much in coping with my symptoms and daily reality. We laugh a lot together and that is so important to me.

I have heard disability campaigners try to challenge the idea that disabled people are not sexual and cannot have sex. They state that WE DO with much enthusiasm. I understand why (and I am a sexual being) but this still makes me feel excluded, as someone with a chronic and largely invisible illness who cannot have sex, from wider disability movement. My experience does not always fit with that of other disabled people or their aims/assertions, though I completely identify as disabled as my illness and fairly severe impairments seem permanent. Our experiences are so diverse and I hope that one day a more subtle and complex "disabled voice" that can emcompass all that will emerge."

Marie is single and has been living with chronic illness most of her adult life.

"I very much want to be a part of a family, to have somebody who's affectionate to me and loves me, somebody who wants to come home and tell me how their day has been and see what I've been doing, all those small things. On the other hand I'm basically asexual at the moment - I have no sex drive and my physical issues mean that having any type of sex would be a huge issue anyway so I'm really not motivated to do anything about the sex drive issue.

I was in a relationship for several years and there was some sexual activity but it wasn't frequent and we were very constrained in what we could do (and when) because of my low energy levels, my pain, etc. At the time my partner had a relatively low libido and was a very affectionate person so it wasn't a huge hardship for him from a sexual point of view. In the end the relationship didn't continue and my being sick was certainly a huge part of that, but I don't think the sexual stuff specifically was really much of a factor in the relationship ending.

I've been sick for basically all my adult life. When I got sick I was still a virgin, and although I have had periods of time where I've been sexual I think my illness has HUGELY affected my experiences of sexuality and how I see myself. I don't have any experiences of sex that don't include pain and fatigue and dealing afterwards with flare-ups of symptoms. I'm really quite happy now being asexual. I do masturbate occasionally but not very often, probably once a month at most. Most of the time I'm so sick that I really have no sex drive, no urge to masturbate or have sex.

I want physical affection, casual touches like when you're both in the kitchen and you put a hand on somebody's back as you brush past, hugs, curling up on the sofa with somebody's head on my shoulder or my head on their shoulder. I like other sensual pleasures too - gentle massage, cuddling my kitty, listening to glorious inspiring music, luckily I can access most of those without being in a relationship."

Lola is married and talks about the impact her illness has had on her relationship.

"We have been married almost 9 years. I am lucky that I have a supportive husband but I see the look in his eyes that sometimes he thinks I'm just lazy he has never said that but that is how I feel. We are still close and take the time together and cherish it.

It has affected our sex life greatly. Not that we used to have sex every single day but now it can be weeks. In my first marriage, my first husband died in a car accident, I never had to be the aggressive one but since my diagnosis I have to be and I'm not used to that. I don't feel sexy at all. I have lost about 10 pounds but I still feel awful about myself.

I would just like to add that even with supportive partners there are needs that we need met and maybe we need to start saying what those are. Since my diagnosis I feel the need to keep apologizing for everything including sex."

Seeing the World - an interview with photographer Rob Covell

I decided it was time to interview some photographers and find out what drives them to take pictures. Below is an interview with my friend Rob Covell. Rob has a deep humanity in him and an abhorrence of social injustice. As well as his great work I also admire him for sticking to his principles which he talks about in more detail here.

What or who got you in to taking photographs and did you ever study it ? 

There have been a few factors, and I guess I don’t really explore the reasons until you ask me like that. 4 years ago I went to the Caribbean with my partner and took a cheap bridge camera and I couldn’t stop taking pics. That certainly sparked an underlying need for me to take photos. A year later I saw some beautiful photos on Flickr of a model, and I just thought how I’d like to take shots of my partner like that. The bridge camera was not allowing me to take control of the photos, so I bought an entry level DSLR. I’m self-taught plus whatever info I can cadge off other photographers.

What inspires you ?

My influences are really my passion for the things I photograph. I know little of the wider art form, so I couldn’t really name you many famous photographers that inspire me. I actually just like going through magazines or websites and will suddenly see a photo I really like. But as I said, for me photography is about capturing my passion, or the passion of the subject…or in some cases both! I see photography as a means to convey something, rather than just photography in itself. That also extends to issues in the world that I care about, where perhaps my photography can help give publicity or fresh angles.

What projects and photography you are working now ?

I’m working on a sports photography project and also looking to expand my fashion portfolio this year. I also want to get into wedding photography and really strengthen my overall portfolio.

Can photography heal ?

There is no question it can heal. For me personally coming off a recent illness, the relaxation and distraction photography has given me has been invaluable mentally. As for the subject… if I can take a photo that makes the subject see themselves in a positive light, say for example someone who doesn’t like their photo taken, and they are pleased with what they see… I guess that’s a mini-healing, or reconciliation with self. I love it when someone sees something about themselves that they like in a photo, particularly when camera shy.

In what ways is photography exploitative of its subject matter ?

I think this is a very deep and important question, with no doubt many perspectives to it. I personally avoid taking photos of suffering, eg. If I’m photographing a marathon, and someone hurts themselves, I find it gratuitous to zoom in on their agony. That extends wider to those photographing more serious human suffering, eg. In war zones. If what you photograph can make a difference to the subject’s plight, then there is an argument for the invasiveness of some photography. If it’s all about the photographic award of the shot, then I have a problem justifying it. I regularly photograph protests against Deaths in Custody, and I’m very wary of how raw the emotions are of those who have been bereaved and unjustly treated. It’s a responsibility not to step over a line in conveying what needs to be told, and putting out a family or loved ones personal desperation.

Another angle on this is the exploitation of women. I have strong views on how women are portrayed in the media, and at the same time my photography has recently moved into the realms of fashion/models, although this is not exclusively female of course. But I feel a personal responsibility to what I maybe portraying in my pictures and to the subject. I won’t manipulate photos for example, and I won’t use a shot that the model doesn’t like. I firmly believe in re-addressing media/social perceptions of what is feminine and what is beauty and that’s something I hope to develop.

Finally, please complete this sentence 'I love taking photographs because...' It helps me convey what I see and what I love and lets me see the world with new eyes.

Divine Symmetry - an interview with photographer Craig Thomas

I decided it was time to interview some photographers and find out what drives them to take pictures. Below my good friend, Vermont based photographer, Craig Thomas shares what inspires him.

What or who got you in to taking photographs and did you ever study it ?

I am self taught and got into it after a great catastrophe. I find it very healing. I had been used to working in groups and am very highly motivated, I find the solitude of photography much more appealing and it also makes me much more effective in my output.

What sparks your imagination and inspires you ?

I find classical arts very inspiring - my work seems to fit the music of Beethoven, Vivaldi, Bach et al. I am trying to achieve a similar 'epic' quality in my own work. I am also heavily influenced by the arcane arts. My research into divine symmetry has led me to the world of alchemy, hermetics, science and ancient cultures.

What projects are you working on now ?

Right now I am working on a book out here in Vermont, I have collected a large body of work on my three year journey. Now that i find myself in a new country with a new life it will be helpful for me to have a way to show people 'the best of'. I love displaying my work in print more than any other medium.

Film or digital ?

Digital for work as it makes life very easy and inexpensive but ultimately film is the master, nothing beats it.

What matters most to you, how a photo looks or how it how it makes you feel ? I was watching an interview with Nan Goldin the other day and she said, unsurprisingly, that when she was shooting it was all about how she felt. The composition and artistry was the second stage, when she got the negatives back. In a sense she gets in very close and then removes herself.

I have no attachment to the work i create itself, to me it's the innate nature of being a photographer - collecting flattened moments of a reality distilled through my own thoughts and feelings. If a photo gets stolen take a better shot. If I lost all my work somehow, shoot it all again. I find that my ability and perspective increases rapidly so i often go back an re-edit work.

As for actual shooting, it's all about the knowing and the trust that I'm letting the events infront of my camera unfold. Framing for me is important but there is also a moment in time that I'm looking to capture. That's the moment when my subject let's their guard down for that split second.

Can photography heal ?

For me photography has created the single greatest healing experience I have had, and continues to do so. I found that reviewing my work gives me a great sense of where I was at at the time of shooting. I then remember the story of the shoot itself, so as well as analysing my work I can also analyse myself at the same time. I find the more at peace I am with myself the better my work. These two things are congruent in creating focussed and strong work.

Finally, please complete this sentence 'I love taking photographs because.....

...it helps me answer questions in a way that nothing else can.

Living Differently - Making it Better

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.

The Language of Movement - an interview with photographer Kim-Leng Hills

I decided it was time to interview some photographers and find out what drives them to take pictures. The compelling image below is by Kim-Leng Hills whose personal story is an inspiration, as is her work.

What or who got you in to taking photographs ?

I was about 16 and was working my way towards being an illustrator,  I was obsessed with drawing and had just been accepted at at the century old Byam Shaw School of Art. I loved observing people, situations, life, everything around me. I'd get my friends to model for me, and I'd see if I could draw them as precisely and quickly as possible using inks. My Dad gave me his 1970's Cosina SLR and I would sneak out of school to go venturing with a friend of mine round the whole of North Kent, photographing onto Ilford film as we went. When the film had been processed, I'd then turn them into illustration infused images. Drawing over photographs with inks.

I also had an obsession with Jackson Pollock. I used to take the train to London to sit at the Tate and stare at 'Summertime Number 9A' seeing if I could find something new about it the longer I stared at it. I loved how Pollock would devote his mind into the language of movement and lines, completely creating ground-breaking work that had never been seen before. It was seeing a black and white photograph captured of him by photographer Hans Namuth that triggered my passion for Photo-documentary. As soon as I got my first debit card, I bought a Hans Namuth photograph of Jackson Pollock painting in his barn.

What sparks your imagination and inspires you ?

MUSIC! My Dad worked on the pirate radio station, Radio Caroline, and as a child I grew up listening to a wide variety of music and playing the piano, violin and the guitar. If you'd asked me who my favourite band was when I was 7, you would've gotten "The Mamas & Papas, Queen, Holst, Elgar and Debussy" as an answer. In my head, they all went together. So music has always been there as a lifeline for me throughout my entire life.

My Dad. As I've grown older, I've discovered more of his work he's kept hidden and not really shouted about. Turns out he loved making his own films and had produced a series of super-8 films of life in Malaysia when he'd met my Mum, and had put his own music to the footage. His photographic work is also incredible. Finding gems like these that have allowed me to learn more about my family over the years has definitely inspired me to keep going with my own work.

I could list a vast number of Photographic artists who inspire me, but if anything, its the people that I meet who inspire me the most. I teach full-time at the moment too, so surrounding myself with 11 to 18 year olds is one of the most inspirational places I've had the joy of being in for 12 hours a day!

The last exhibition you saw that you'd recommend ?

The last Photography exhibition I went to was Tom Stoddart's 78 Perspectives at London Riverside last Summer. Each image either made me want to weep or gave me goose-bumps.  Photo-documentary can create a huge impact when used in the right way. I ended up orbiting this exhibition for about an hour; the work was mesmerising and most definitely life affirming.

What projects are you working on now ? 

Currently, my life revolves around teaching full-time at a new Creative Media secondary school in London. On the weekends or evenings, I'm working on composing the score and sound design for a new theatre production by Alex Gwyther called 'Our Friend The Enemy' based on the Christmas Truce.

Photography-wise, I am often over in Devon with EarFilms helping document the development of their beautiful story-telling company.  I co-run a non profit organisation known as Art Is The Cure.

What has photography taught you ?

That photography can start mass community projects, and is an excellent way to challenge yourself. Through photography I have achieved dreams I've never thought would happen, such as making a book with Kevin Spacey and Steve Lazarides, meeting and working alongside Eddie Izzard, or giving lectures for the Tate Galleries.

Film or digital ?

Film. It's organic. The process of having to develop your own prints connects the photographer to the entire 'way' of photography. Generations miss the opportunity to know what it's like to have to wait. I teach students that once upon a time, we used to have to wait a week before we could see our images.

What matters most to you, how a photo looks or how it how it makes you feel ?

Both. When I photograph something, the image will come across a hell of a lot stronger if I've connected to the subject in the first place. It's why I love photographing live performance more than I do Fashion or Commercial. If the subject is interacting with the camera, if they are in their element, a moment where they're staring off into space, or reflecting any essence of themselves, then the image will be powerful. Technique can dance around how the subject 'performs', with practice; the technical side of things becomes second nature, and your brain and fingers and doing everything without you having to think about it. All you care about is coining the Decisive Moment as Henri Cartier Bresson so perfectly put it. The most powerful images can often come about completely unexpectedly.

Can photography heal ?

The notion to 'heal' can possibly mean to resolve something, or to perhaps create a sense of inner peace or calm. I strongly believe that photography can do that. For a start, it makes you stop, shut up, and just look, right? It makes you study something in detail and it also evokes some form of emotion.  Take a look at Tom Stoddart's work for example; it's shot with the purpose of finding beauty within the pain. Then there's someone like Gregory Crewdson who will get an entire neighbourhood to create a photographic scene, working with these people for however long the project takes.

Photography has helped me face my own self-doubts. During times of great suffering I have picked up my camera, climbed mountains and battled hail storms. It has taken me to where Ansel Adams found his inspiration, made me really stop and look. And feel. And put the camera down.

In what ways is photography exploitative of its subject matter ?

I remember when I first started working with the incredible teens at Teens Unite Fighting Cancer. These amazing people were dealing with life-limiting illnesses and teaching me so much about life and what they go through every day. Then there were strangers I met on the street, be it workers or the homeless. I was constantly inspired and wanted to begin a guerrilla project of plastering their faces on walls during the night, so that when the people of London awoke, they would suddenly see faces of ordinary people looking over the city. I wanted to share their stories and call it "Invisible Heroes". I had the backing of ITV in collaboration with my organisation Art Is The Cure  and it was one of the first projects [my Director] Rich and I wished to do about 3 years ago, but eventually fell through simply because of the idea of 'exploitation'. I  wanted to show the fact that we all struggle, we all have our stories to tell.

How well can photography depict the truth and/or expand our knowledge of a world we do not know and have not seen ?

Take Jeff Wall for example -- how he cleverly gets actors to re-enact scenes, or to create false moments, but photographs them in such a way that they seem genuine and/or following what conforms to a Decisive Moment. It simply underlines the fact that we can so easily take a photograph as truth regardless of it being manipulated. I am constantly fascinated by impermanence and the fact that everything is constantly changing. Photographs can be said to capture 'evidence' of what something looks like, or once looked like, in order to educate us of what is 'fact' and what is 'fiction'. Because we can see it, we tend to believe it.

Finally, please complete this sentence 'I love taking photographs because.....'

I love taking photographs because I love going into another world and feeling a part of me become 'freed'. When I first started getting into photography, I realised I fell in love with being able to spot things other people usually missed. It's why I loved Street Photography so much. I could easily walk around unnoticed and capture things with a telephoto lens, or a fixed 50mm, and get images of situations or moments that no one else had realised was going on. Then when you look at the image for even longer, you suddenly notice other parts about it too. I think part of me is drawn to capturing the human spirit; what keeps us alive, what keeps us buzzing, and how we treat ourselves and each other. Maybe that's what draws me to photographing the devastating and beautiful aspects of human life. From professional dancers, straight through to famous artists, or a random act of kindness.