September 5th 2015
There’s no denying it’s hard to feel appreciation for a life that isn’t the one I wanted. It’s hard to wholeheartedly embrace the life I have as it’s a million miles away from the one I dreamed I’d have. Yet it’s the one I’ve got, so losing myself in whimsical ‘what if’s’ and ‘if only’s’ doesn’t serve me well in the long run as it won’t change anything. Life often takes us down unexpected pathways and avenues, and it can be hard at times to reconcile the life we want with the one we end up with.
I’ve spent many a day wondering why my life is the way it is, and why I am the way I am. I wondered why illness and disability take such pivotal roles in my life. I’ve also had many moments where I’ve tried to understand the point of it all; when life has felt overwhelming and new challenges come crashing in, it can be hard not to seek out a ‘why’.
Nietzsche once said ‘if a man finds his ‘why’, he can deal with almost any ‘how’’. A reasonable thought to ponder in the pursuit of answers. Yet, what if there isn’t a why? What if things are the way they are because that’s the way they are? What if there just isn’t an answer to such a question? Doing battle with this is exhausting and the only person that suffers as a result is me as I remain in a state of confusion, hovering on the periphery of life as I try to make sense of my ‘what is’ in order to live it.
It took me a while to realise that in order to find a balance in my life I needed to stop thinking in terms of what could be, should be or would be and instead turn to face things exactly as they are. It’s not pretty and it’s not the picture of my life I’d dreamt about but it’s what I have. To deny it or push it away diminishes me and stops me from living. I could choose to rage at the inherent unfairness of life (and I’ve done that plenty of times) but instead of making me feel better I tend to feel even more discombobulated and broken as a result.
My other choice is to breathe into it, turn to it and face it. This won’t eradicate the daily onslaught of pain, fatigue and the plethora of other debilitating symptoms nor does it mean I’ll suddenly start waxing lyrical about the joys of illness and disability. Turning to face my reality allows me to stop avoiding life, waiting to get better or hoping for a better moment to live; it brings me into the here and now.
Facing my reality is hard to stomach as the ‘me’ I am, is not the ‘me’ I’d hoped and dreamed about but there’s no point pretending it’s anything other than what it is. I have days when life feels too overwhelming and I retreat from the world in order to restore my perspective and sense of balance. Yet I also have days when I feel full of hope, joy and enthusiasm for life and it’s days like this that inspire me to breathe into the dark days as I know they’ll pass. It’s never easy admitting one’s frailties and I have many, but the more, over time, I’ve turned towards them all with a gentleness, tenderness and compassion, the more in balance I’ve become. It’s a work in progress of course as I have days when the shutters fall as it all gets too much but I’ve accepted these as a part of my life and choose not to push them away any longer. This doesn’t mean I love having ill-health and disability in my life but I try to love myself despite their presence and this means accepting myself warts and all. My life isn’t easy, but is anyone’s?
Admittedly, acceptance is a tenuous and gnarly state of being for me as there are still many creases to iron out and knots to untangle. I’ve turned to face my ‘what is’ but I haven’t, as yet, started floating in the fluffy pink clouds of inner tranquillity and peace. Sometimes I long for a plateau of stillness where I can sit and contemplate my life in order to get my head around my reality but my ‘what is’ is shifting so rapidly and so dramatically, it can be hard to catch my breath, let alone contemplate it. I’m not unique as life changes for everyone as we all live with the ebb and flow of the tides constantly changing the shape of our lives. Sandcastles were never built to last, and, like the ebb and flow of the tides, life is forever shifting and changing.
Of course, being human, there is a desire in me to preserve those sandcastles at all costs. Feeling ultimately powerless didn’t really help me come to terms with the rapid deterioration in my health and the sense that my life, my dreams and my sense of hope were slipping out of my hands. Yet, I’ve learned the hard way the futility of building sandcastles to last and I’m instead trying to enjoy them in the moment before setting them free back to the sea.
Coming to terms with disability is fraught with challenges as its part of our genetic make-up to seek wholeness and perfection. It’s hard to find a way to reconcile disability in a world where survival of the fittest is shouted from the rooftops and where anything that’s broken or imperfect is discarded out of hand. It’s hard to feel acceptance when others look at disability as a problem to be fixed or worse, a need to invoke pity. It’s even harder when those beliefs are deeply ingrained into my own consciousness.
Although it took me a long time, I finally realised that it wasn’t my circumstances that were causing me the true distress but it was my beliefs about these circumstances. I believed I was broken and ‘less than’ and until I changed this, there could be no positive fluffy clouds of acceptance for me. Yet, surrendering gracefully to my condition felt like giving in. Giving in wasn’t an option but I wasn’t sure I knew how to surrender gracefully without feeling as though I was giving up. It’s a fine line and I couldn’t be sure exactly where it was as the tide kept coming in and washing it away.
In the end, I reached a kind of inner truce through the realisation that all of my internal battles were only leading to more suffering. I had to stop waging war on myself in order to establish a sense a peace within me and this came through opening up to the gentleness, compassion and tenderness I so often show to others and embracing them into my own existence. My life isn’t the life I thought I’d have, but is anyone’s? I fought my reality for years but my breakthrough came when I stopped fighting and started trying to find new ways to live and thrive despite the challenges I face.
There are days when I want nothing more than to punch the acceptance and compassion fairies in the face but the anger fairy is no less relevant so I guess by allowing all of my emotions the space to be, I’ve created a better sense of balance where I can be more gentle towards myself. So, although it is hard to feel gratitude for my illness and disability, they are a part of my ‘what is’ so by accepting them I have found a way to move with them (and so myself) rather than against them. I’m still not floating in those pink fluffy clouds but I’m not really convinced that’s my style…