I am delighted to share another beautiful submission to the Monk in the World guest post series from the community. Read on for Sarah Pickering’s reflection Creating a way through. Creating, a way through.(because punctuation matters).
Spring is happening all around me, the trees are exploding with the limiest of greens and I want to move with the season, I would love to bloom into spring, but I live in winter. I was born on the winter solstice and on the first full day of my life there was a snow storm that brought London to a standstill. I understand my grandfather walked for miles across the city through the snow to meet me. Perhaps this was a sign of what would come along for me down the road with an energy limiting chronic illness. I was born for winter.
Ten years ago I had an unknown virus that made me sick, and although the initial virus passed, the after effects of it lingered and I am still unwell. It manifests as constant crushing fatigue – imagine a hangover after an overnight flight following the day you ran a marathon – and an exacerbation of multiple symptoms. The fatigue is always, and the exacerbation of symptoms happens after exertion of any kind. Hibernation would be ideal for my body, but even after the longest sleep imaginable I would still wake up tired.
As Spring ripens all around me I feel like I am left behind in winter but I am not alone. There are many, many who suffer with life-limiting chronic illnesses, some with debilitating pain, others with a chronic energy shortage, and symptoms that take the feet out from under us. I have found many others like me online and we have a community of sorts, although you will never find us together, because who among us could manage such a meeting?
When I was first sick I tried to keep working. I tried very hard to keep doing all my normal things but I soon realized that this was not sustainable. I needed to enter into a time of ‘aggressive rest therapy’, which is what my doctor calls the three D’s of stopping: delete what you can, delegate what you are able to, and delay everything else. But the initials to aggressive rest therapy, is A.R.T. and aggressive rest, as he describes it, was part of the answer to help me survive, but art and creativity would become my way through to blooming, like the Spring I long to live in.
I have created things all my life, from tunes on the recorder when I first learnt to torture my family with that instrument, to constructing from junk, to painting, mosaics, murals, stained glass, printing, weaving, other fibre arts, drawing, calligraphy, poetry, and storytelling. I have tried it all and I am ever exploring all the mediums. Art is what I needed, it was going to become my way through but I was exhausted. I had nothing left at the end of the day to create anything as all I could do was collapse on a sofa or into my bed and I found that time of collapse getting earlier and earlier in the day as I lost more and more usable hours.
I had to reorient my day to nourish my soul and to feed myself through creativity. I never wake refreshed but I get up early anyway, it won’t help to sleep longer so I might as well use that time when the house is quiet and before the acts of daily living really need my attention.
I need to create first, so every morning I sit at my art desk and for much of the year I start in the dark and watch the sun come up and cover the sky with the pink hues of dawn. I find that I can paint my pain and express my despair in colour and line where I struggle to find words for it.
I started writing morning pages (thank you Julia Cameron) and found I was using so much paper journalling words that needed to get out of my body that I had to find a way to turn them into something beautiful. So I began the process of filling a page with my thoughts and my pain and disappointments and over time they slowly became acceptance.
I don’t need to go back and read these thoughts again, all I needed was to get them out of me. Aware of how many trees were involved in this process I came up with a way to use less paper. I poured my heart on a page and then turned it upside down and wrote down the page again, rotating it 90º I wrote over and then turned back again the other way until my words became illegible. Then I could turn this illegible mess into something beautiful by painting over the top. Turning the illegible into beauty is the process of acceptance of my chronic illness.
Acceptance is something I hold in one hand, but in the other I hold onto hope.
I painted my hands holding hope and acceptance in the form of rocks to remind me of this tension and balance. Hope is problematic if it involves an end to this, a cure, or any particular outcome. My illness has no end date and no treatment beyond managing symptoms. If hope is about a medical cure then there is little hope. If hope is about a miracle then I believe Godde could heal me, but They may not, and if it does happen for me then what about everyone else? It’s not that I have no hope in either of those things, I do have a little in both but I cannot sink all my hopes into those things or any particular outcome. I have to hold hope very lightly and loosely and at the same time hold acceptance. I cannot have hope without acceptance and I cannot have acceptance without hope. I need both.
I have to accept that this is how it is until it isn’t and also hope that it could change until it does.
My hope is not in a particular outcome that I desire but instead it is in the One who loves me most in the middle of it and is with me as I live each day and I think this maybe how I bloom, even in the winter.
Sarah Pickering thrives on creativity in all its forms. She lives in beautiful BC, Canada and moved here from the UK in 2005. She co-pastors a small non-denominational church and lives with an energy limiting chronic illness which has restricted her life while also focusing her on what really matters.
