Here I am: for those who want to hear

I’ve been trying to think of ways to describe the situation I’m in at the moment, ways that hint at what it feels like – the lived experience of it – not just the facts. And it’s hard.

Language is so limited, we rely on common experience to contextualise the words we speak and hear, and there is so little common experience for most people here.

It can sound like there is – I use words like ‘tired’, and ‘poorly’ and ‘in pain’ – so it seems like you know what I’m saying, but it’s not the same. We need to work a little harder to communicate well.

So I’m going to try, will you come along with me? You’ll need to be patient because it won’t be quick or easy. Try and hear beyond what the words mean to you, and listen longer and deeper to my heartbeat behind the clumsiness of our common language.

Right now my situation is precarious. It makes me think of that classic scene in so many movies where someone has crashed through a safety barrier on a cliff side road, and their car comes to rest precariously seesawing over the edge of the cliff. It is rocking to and fro as the driver panics, trying to work out what to do. She is staring through the windscreen at the abyss, and she knows she needs to crawl out of the car because at any moment it could fall, but she can’t. Any movement towards the exit could tip her over the edge. It seems endless; the fall and the death at times feel inevitable and yet she could still make it out alive. Sometimes the ground underneath crumbles and you think she’s sure to fall. She is trying to inch her way towards safety, but each step could be the wrong one. The fatal one.

You could say that everyone’s life is just as precarious; none of us know the days of our lives, and none of us know what joys or sorrows tomorrow could bring. But I am living with an uncertainty of a different nature. A more immediate nature. I am staring down over the edge of that cliff and wondering, did I already fall?

I am very poorly at the moment. Many of you will have heard me say that many times. I wish I had better language for the nuances of what that means. Because I have always been poorly – at least for as long as you have all known me, I have. So what do I mean today.

Very poorly today means that there are times when I am doing nothing and the poorliness is unbearable. My poorly before meant that if I was lying alone in bed in a dark and quiet room, I could calm the ME beast down to bearable. I could distract myself from how ill I felt, and if I didn’t try to get up, it felt ok. Even when I did get up, or go out, or do something, I knew that once I got back to my dark and peaceful bed, the symptoms would quieten back down to bearable eventually. That in itself made the unbearable more bearable. I could get through it because relief was possible and because the minute it got too much I could retreat, rest, placate the beast and recover.

I must admit it didn’t feel bearable at the time, but isn’t it so true that you don’t know what you’ve got til it’s gone. Describing​ that now sounds positively utopian. It wasn’t.

But now I have encountered a scary change. It’s subtle in a way and no one would know unless I told them, but it feels like I’ve crashed off the road and I’m balancing. Now when I go to ‘rest’ there is no abatement in my symptoms, no relief from lying down. I am having to use my sunglasses, eye mask and ear defenders a lot more often, but even with them the world has become unbearable. Lights, sounds, just living and breathing means suffering. There is no rest any more, because there is no respite at all, just enduring the existence, and the existence is unbearably painful. All the things I used to do to distract myself, to cope, are now dangerously exhausting – what was rest has become exertion and any exertion could push me over the edge.

At those times – the times when I lie on my bed, eye mask & ear defenders in place, weeping at the sheer intensity of the suffering, knowing that there is nothing I can do to alleviate it, nothing to stop it from worsening – those are the times that I wonder if I have fallen. If I am in fact falling hopelessly to the end.

There are still some times when the symptoms abate a little and it feels more bearable again. I am so grateful for those times now. I want to be more grateful, I want to really drink in the grace of them. But it’s hard. Even in those times I’m still so very sick. They are fewer and further between and I don’t know how long they will last or whether they will come again.

I know that many people with ME have fallen off this particular cliff, and they are still alive, they are existing in some way. Alone as they are in their darkness and their unrelenting suffering, they are alive. So I know existence is possible over that edge, but it fills me with unimaginable horror. There are a few that have been down and returned, but their stories of that place only deepen my horror. Many don’t make it back, existing in a never ending nightmare or ending their lives when it seems there is no other escape, and no strength to go on.

I don’t know if I will fall. I don’t know if my precipice is THE precipice. It could be this time, or the next, or the next. I might never be plunged into the depths of that despair place. But when I lie in the agony of sheer existence, not knowing if this time it will end or not, I also wonder, is this it or is there worse to come. Will I look back on this with longing. And how can I bear it. The terror and the agony engulf me.

‘But you, Israel, my servant,
Jacob, whom I have chosen,
you descendants of Abraham my friend,

I took you from the ends of the earth, from its farthest corners I called you.

I said, ‘You are my servant’;
I have chosen you and have not rejected you.

So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.’

I am afraid. When I see despair to my right and my left and darkness readying to take me, I am afraid. I don’t know how God can follow me there, certainly no human can. And others who have known our God have fallen and despaired. He doesn’t promise to protect me from this future. And yet, He has promised to never leave or forsake me. I don’t know how, and I don’t want to find out, but this is my faith and this is my courage: I choose to believe that He will find a way where there is none. I choose to believe that even if I do fall and my future is alone in unrelenting darkness and agony, even there I am chosen, even there I am His.

Please pray for God’s mercy to keep me from falling over that cliff. Please pray for enough strength and health to be the wife, mother, daughter, friend that I want to be; that God created me to be. Please pray for deliverance. And please pray that wherever I go He would go before me, with me and behind me.

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