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Gleaming in the dark

On ME Awareness Day (12 May), Keren Dibbens-Wyatt bravely shares an insight into what life is like for someone with myalgic encephalomyelitits (ME), as well as revealing the hidden creative treasures she has found in her stationary life.

I had a big birthday recently, a bittersweet 50. I couldn’t really celebrate the milestone. Not because of lockdown, but because I live my life in permanent lockdown, being housebound with the neurological illness ME.

I’ve been sick for 25 years now; half my life. I am extremely weak, functionally disabled, barely able to stand or walk for more than a few seconds. My husband is now my carer. The illness wasn’t always this severe; I used to be able to go out sometimes, albeit in a wheelchair. For the last three years, and the foreseeable future though, the small interior of a bungalow, and mostly of my bed, is my world.

I wake late in the morning (after a disturbed night whatever time I went to bed) feeling like I’ve been pummelled all over, struggling to open my aching eyes, my brain taking an age to come into a place of even basic functioning. Most of the time I don’t have the energy to dress, bathe or make it out into the garden, let alone out into the world.

Gifts hidden in the stillness

Yet, over these long years lost to the heavy weariness of exhaustion, my faith has become stronger than ever. Forced into stillness (wishing I could kick and scream against it at first) I made the choice to begin praying in earnest. What else was there to do with such long lonely hours? Ten minutes a day, I gave to God. 

In return, he lavished on me his love and attention, calling me deeper and deeper into himself. I was astonished. I began to relish the silence and the joys of contemplation.

But there was more. On a rare visit to a chapel ten years ago, God showed me my calling as a writer. I hadn’t written since before my degree. And yet, somehow, the words and ideas tumbled out. I couldn’t (still can’t) get them down fast enough. Stories and poems, articles and devotionals, children’s books and even novels began to form. I can write for about 20 minutes a day. If it’s a particularly good day, I can do that twice, if I rest in between. Miraculously, books come into being.

Five years ago, this interior world offered another gift to me. I found I had a small talent for art. I started to draw and paint, sitting up with a board across my lap. It’s physically tough to do, but a wonderful way to escape these four walls.

Acceptance and meaning

My short prayer times have grown along with my relationship with God. What else is prayer, but relationship? All this time, my loved ones and I have prayed for healing. For whatever reason, it does not come. It’s unfathomable and yet I’ve come to accept where I am each day. I will continue to persevere in asking for strength, and though there are times I get very down and frustrated, I lay those too before the one who loves me.

It is my deepest hope that the creative treasures God has drawn out of my stillness and prayer life, are somehow both a blessing to the world and a sign to others that even a stationary, difficult life can be meaningful. 

Keren Dibbens-Wyatt is a chronically ill writer and artist with a passion for poetry, mysticism, story and colour. You can follow her on Twitter @HoneycombHermit. Her writing features regularly on spiritual blogs and in literary journals. Her latest book is Recital of Love (Paraclete Press, 2020). For more information on ME visit Invest in ME Research.

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