Living Differently - Who Cares ? by Will Hames

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)

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

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

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."