20 Years

by Christine Sine
Mosaic for Testimony piece resized jpg

Mosaic by Keren Dibbens-Wyatt

By Keren Dibbens-Wyatt

Celebrating: A Testimony about not being healed.

The day before Valentine’s, I was celebrating 20 years of what God has done through my disabling illness.  Did I say celebrating? I did. I’m coming back to that.  On that day it was exactly two decades since I last managed to struggle into work.  Afterwards I had a doctor’s appointment to find out why I could barely walk, barely breathe, barely anything. I was hoping to be signed off for a fortnight so I could have a rest, and get back to normal. But even in that hope I knew deep down I was kidding myself and there was something horribly, desperately wrong.

Strangely, one of the things about having M.E. (the eventual diagnosis) is that nobody treats it like something that is horribly or desperately wrong. Not even (sometimes especially not) doctors. Because they can’t see it, because the worst of the symptoms come after exertion (after you examined me, after you visited, after that short trip to the post office, after that 2-minute walk or that 10-minute phone conversation) to the outside world it doesn’t look so bad. Maybe she’s “just” depressed, they say, maybe she needs more fresh air, or vitamins, or maybe, she should just sort herself out and get back in the fray, like we all have to.

I know, I’ve had it all, heard it all, from people who supposedly loved me or worked with me, or were long-term friends. The disbelief – the inability to understand just how bad it is – leads to betrayals, unkind comments and many disappearing acts.

So one way I’m using this anniversary is to spell it out. Because one of the things I’m celebrating is the honesty I’m no longer afraid of. I have been brought to a point where although unkind, unfeeling comments and mistrust will always hurt, the experience of what I have to face every day needs no validation or shoring up, it’s right there with me. I am the one who wakes 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. I’m the one who often can’t muster from anywhere (because it isn’t there) the energy to dress, bathe or make it out into the garden, let alone out into the world. I’m the one who hurts everywhere, feels fluey poison in all her muscles and has to miss the birthday party (including my own) or not go to church for months or even years, and who has to deal with the heartbreak of not being able to go for a walk, not being able, most days, to stand the motion of a car, nor cope with the stimuli of television, music, radio, nor the local supermarket, with its busy people, lights and noise.

I’m the one coping with the paralysing exhaustion. So when someone tells me to pull myself together, when a doctor says if I need a wheelchair I should check the Yellow Pages, when an Occupational Health advisor says if I can open a packet of crisps I can certainly cook for myself, when a friend stops answering my phone calls; when these things happen, they hurt, but I am no longer surprised, and I know that they say far more about the other person than they do about me or my chronic illness.

The people who love me, see me, not the things I can’t do. They live with those too, but together we find ways around and ways through.  My husband is one of the bravest souls I know. He is not afraid to go into Mothercare and buy me a toddler’s cup, if it is what I need because my arms are so weak, or if I am so uncoordinated that I need a lid on my drink to avoid spillages. He is not afraid to laugh at the inconveniences and the stupid, damnable difficulties the illness brings. Why? Because he loves me.   My parents, brothers, closest friends are the same. If it helps me, they do it, however daft it might seem. They know the illness isn’t me.

So what on earth is there to celebrate, then, if everyday life is so hard?  So much.  I have learnt so very much. I know a lot about illness, about disability, about suffering, about poverty, about thinking outside the usual boxes.

I know how to struggle, how to hold on, when to push through, when to lie still. I have learnt to live with limits, with frustrations, with other people’s fears and ignorance. I have made peace with my ailing body and learnt to love it despite all the things it can’t do. Because the poor thing is so ill, and I hold space around that truth for it, because it’s part of me. I have learnt self-compassion and strategizing, pacing and acceptance. I have learnt what love is and what it isn’t. I have learnt the immense value of genuine hearts and know who loves me.

But the greatest gift this illness has brought me is a deep relationship with the living God. Forced into the stillness and the quiet, I now relish silence and contemplation. Before I met Rowan, I found solace in the company of the Lord. Eventually (don’t imagine this didn’t happen without a great struggle, my ego cracking into pieces like compacted snow falling from a grizzly bear’s waking back) I have begun to find my true self in him.

After learning the hard way that I am of myself, nothing, I am now, remade in God’s hands; and in those small precious pieces of the day when there is energy, I am a writer and a painter. God’s doing, as for many years I struggled to read more than two sentences at once, my cognition was so impaired. Now I journal and write and think whenever I possibly can. And the art has taken no-one more by surprise than me! My creative soul, given to God, guided by him, has made me anew.

Yes, I’m still horribly ill. If anything, more exhausted, stressed and struggling with physical tasks now than five years ago, when I had improved slightly and was often able to go to church. That is beyond me at the moment. But although this is upsetting and I often have a good cry and down days, I know I must accept this too as a stage, a season, and give it to God, and let him use it. And yes, there are opportunities that have passed by. I never got to have children, though I have a lovely stepson now who is a real boon to my maternal heart, but I do get to see everyone I meet as one of God’s children. Someone called me “Amma Keren” recently. My heart swelled.

I am not celebrating having been ill and disabled for twenty years. It has been, and still is, horrendous. I know that behind writing this piece lies the desire to pre-empt the huge sadness that has been building in me as I lurched towards this huge anniversary, this now giant swathe of my life that seems to have been cut out.  I’m not pretending the pain isn’t there, I am choosing to celebrate what God has done with me in those long years. Where he’s brought me, how he’s guided me, what he’s coaxed out of me, what he’s broken and refined in me, what I am now compared to what I might have been. Against all the odds, I’m still here, and I have met some wonderful friends along the way, mostly online, to whom and for whom I am deeply grateful.

I am free now, to know what really matters, to take pleasure in the smallest, everyday things, to enjoy what is before me, not hanker after what may never come. I have been taught to listen, to receive and share beauty and truth, and I hope, wisdom. I have been taught to pray, to intercede, to relate, to live for Christ. All this is precious beyond reckoning. And I am so thankful. Yes, I still pray for healing, in a spirit of persevering faith – if and when it comes I shall celebrate then too, you bet!

There is nothing now that the world can offer me that I would swap for where I am with the Lord. Even though each day is a struggle, even though there are worries aplenty, I know who I am.  I am the Lord’s mystic creative contemplative. I am a writer and a pray-er and a painter and a poet. My heart bursts with love, and my inner eyes are wide with wonder. May it never end, whether the burden of illness and lack is lifted or not. May each season be utterly his. May blessings flow through me and may the living, healing God be praised.


© Keren Dibbens-Wyatt 2016

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Peter Hitchcock March 4, 2016 - 8:37 am

Thank you for such an accurate description not only of the illness but also of the isolation that it brings. May God bring you more good days than bad ones.

Keren Dibbens-Wyatt March 4, 2016 - 11:40 am

Thank you, Peter. If you suffer too, I pray you will receive all the grace you need. Thanks for reading.

Joy Lenton March 4, 2016 - 8:40 am

Oh dear Keren, this made me cry – in recognition, with grief for all you have and still suffer and with deep heart compassion. I also applaud the naked honesty and courage you reveal in your beautiful writing. There is so much here which finds an echo not only in my own story but in my heart, especially this: ” the greatest gift this illness has brought me is a deep relationship with the living God.” Yes and Amen!! It doesn’t make everything suddenly all right or take away the pain of wondering how different life may have been, but it does give hope and purpose to these M.E clouded days we live in. Sending much love, gentle hugs and prayers to you, sweet sister. <3

Keren Dibbens-Wyatt March 4, 2016 - 11:38 am

Thank you for understanding my heart, dear Joy, and for all your amazing encouragement.

Alex Tang March 4, 2016 - 9:34 am

Thank you for sharing. You are such an encouragement to many of us.

Keren Dibbens-Wyatt March 4, 2016 - 11:36 am

Thank you, Alex.

Carol Bindel March 4, 2016 - 10:20 am

“I am free now, to know what really matters, to take pleasure in the smallest, everyday things, to enjoy what is before me, not hanker after what may never come. I have been taught to listen, to receive and share beauty and truth, and I hope, wisdom. I have been taught to pray, to intercede, to relate, to live for Christ. All this is precious beyond reckoning. And I am so thankful.”

Yes, precisely. My own sharing is now so quiet only the most alert, present and willing notice. Church– who knows me there, now? A voice to speak is not my calling, I’m finding. Alone. I’m more alone than I’d ever imagined possible. And yet each day that I wake up and am able to notice the sky, the moment in which I exist, then I give thanks. The least of these, nearly invisible, even I, too, give thanks and praise; God’s light shines on me, too.

Keren Dibbens-Wyatt March 4, 2016 - 11:35 am

God’s light most certainly does shine on you, Carol, and from you as well, no doubt. I’m sorry for the isolation you suffer. It is in these dark places that we discover “solo dios basta” as Teresa of Avila taught us. God does indeed alone, suffice. His grace carries us through. It is surprising how much God can use the quiet and the seemingly invisible. Perhaps we are treasures that are worth seeking out 🙂 Thank you for reading and leaving a comment.

Laurie Klein, Scribe March 4, 2016 - 10:43 am

“precious beyond reckoning”—a fitting description of your writing, your art, your spirit, your life. Thank you, Keren. “May each season be utterly His” is a prayer for us all to absorb and breathe out.

Keren Dibbens-Wyatt March 4, 2016 - 11:30 am

Thank you, Laurie, for stopping by and leaving these kind words.

Lisa de Jong March 5, 2016 - 12:35 am

Thanks Keren. You honesty was very moving. It will help me understand the condition so much better in anyone that I may meet with it. Thanks for helping move all your readers to a deeper compassion and understanding. It is true too that our real life is our inner life and our communion with God. “Your real life is hidden in Christ with God” Colossians 3:3. As someone who has come to writing again late in my life I relate to the joy that it gives. You are obviously a very talented artist too. All of that feeds the soul and as long as our souls are fed and we have the opportunity to love and be loved, even if that is just loving ourselves and God, then that is enough. Heaps of blessings.

Keren Dibbens-Wyatt March 5, 2016 - 4:51 am

Thank you, Lisa. I had not thought of connecting that verse with my inner world, so I am very grateful for that insight, and glad the piece spoke to you.

bridgeanneartandwriting March 5, 2016 - 6:20 am

That was very beautiful. Thank you. I am really sorry that you are so ill, but I think your insights and writing and creativity and Peace and the love of your family are inspiring. I will pray for you to feel stronger physically, and I so hope a cure is found for this terrible illness – and I hope you and all who suffer from it are blessed and helped whilst you wait in hope.

Keren Dibbens-Wyatt March 7, 2016 - 12:21 pm

Thank you so much for your hopes and your prayers for myself and all sufferers, and for taking the time to encourage me with a kind comment.

iggandfriends March 5, 2016 - 11:38 am

Thank you so much for this; for your honesty and openness. I have rheumatoid arthritis and fibromyalgia.. good days and bad days.. this has made me realise that i need to be more honest with those around me when i hit a bad day, and not just keep going. Thank you so much.

Keren Dibbens-Wyatt March 7, 2016 - 12:19 pm

Hi, I am so sorry that you suffer chronic illness and pain too. Compassion for body and self are so important, I hope you can rest up when you need to, and that things improve for you. Thanks for stopping by and for your kind comment.

William March 5, 2016 - 3:29 pm

Your celebrating makes me think of the rejoicing in the Lord from Psalm 32:11.
Celebrating in God is brighter when we travel difficult paths,
but we have the joy of knowing we never need to travel these paths alone.
Thank you for allowing us to see some of the beauty of God working through you.

Keren Dibbens-Wyatt March 7, 2016 - 12:16 pm

Thank you, William that means a lot.

Rosemary March 9, 2016 - 12:18 pm

What a wonderful testimony Keren. My eldest daughter suffered M.E. for 10 years. Praise God He healed her, gradually, physically and mentally and through her illness her life was turned around and she gained a close relationship with our Lord and even when she was desperately ill he used her to minister to other people. She was a strength to me when I saw how much she was suffering and I say to all those people with no conception of M.E. please try and show more understanding to those with this dreadful debilitating illness. The pain of watching my daughter suffer so much will always be there but I praise God because he used it to turn her life around which was a complete mess. She now teaches art and is fit and healthy. I send you my understanding and love and admiration for your bravery. I pray that one day you will be fully healed.

Keren Dibbens-Wyatt February 14, 2019 - 5:05 am

Thank you Rosemary, I’m so glad your daughter recovered, and so thankful for your comment, and your prayers. God bless you. Sorry to come to this 3 years later! I reposted it yesterday and hadn’t seen what you wrote.

stevejwickham February 13, 2019 - 5:07 am

Sheer determined bravery! There are so many words but none that seem immediately worthy. Lots of love to you all, Keren.

Keren Dibbens-Wyatt February 14, 2019 - 5:07 am

Steve, bless you and thank you for that. I’m not sure it is bravery so much as just being a determined little so-and-so by God’s grace! Love to you and yours as well and thanks for reading and leaving a comment.

Andy Wade February 13, 2019 - 10:14 am

You are an amazing, creative, insightful gift! Thank you for your honesty and openness. Prayers continue, of course, but the gift of love, encouragement, and support is a two-way street and my heart overflows with gratitude for who and whose you are!

Keren Dibbens-Wyatt February 14, 2019 - 5:08 am

Andy, God bless you for this support and love. It means the world. Isn’t it a joy to belong to God!

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