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