I’m having one of those ‘I can’t believe this is my life’ times again.
Despite being significantly better than I was 4 months ago, I’m still almost entirely housebound and having to spend the majority of time in my bed.
I don’t use the term bedbound because Very Severe ME patients are truly bedbound, often unable to lift an arm or roll over and I’m not that sick – I can get up and go to the toilet by myself when I need to, so as far as I’m concerned, I’m not bedbound.
To be clear though, most of my time is spent in bed. I can’t get myself food and drink when I need to and I do have to limit fluids in order to reduce toilet trips, causing me to be dehydrated most of the time, which is not nice.
BUT I do spend some time out of bed, and sitting up in bed doing activities with my children, so I don’t consider myself bedbound or Very Severely Ill.
As I said, my current situation is immensely better than it was 4 months ago, although it’s been rocky with 5 colds since the end of October. I am hoping that things will pick up once cold season abates as I seem to be recovering from them better than I was.
All that is to say that I have been feeling pretty positive about how things are. I have been determinedly focusing on the positives of the last few months, intent as I have been on holding on to the gratitude and hope that feels life sustaining to me right now.
But this time of year has a nostalgic affect on us all, try as I might to withstand it I am irresistibly drawn to reflection on the last 12 months and all it has brought.
This time last year I was approaching Christmas and the New Year with a shadow of grief and fear bearing down on me. My health had been steadily declining, like trying to run up a sand dune the ground just kept slipping away from beneath me, gaining momentum with each day, each slip. My heart was heavy with so much loss, and so much more to come, the New Year promising no newness for me. I wondered when it would end, if it would, if I could keep on declining, falling infinitely into a bottomless pit of suffering and pain and loss.
It was a period of reckoning; of facing how bad things really were, and looking into the face of some of my worst fears.
I didn’t think I could bear it.
And yet now I look back on that time with wonder at how much I was able to do. My life had turned to dust in my hands and yet I still had so much more than I do now. My children spent one night and a day and a half each week with their grandparents, and my mum helped me for parts of 2 other days. My husband took over entirely at the weekend, but in a tangible way, I was bringing up my kids. I got them breakfast and read them books, I helped them with their projects and play, I took them out to meet friends, albeit with help and a wheelchair. I was having to take time out to rest more and more often, to adjust how I did things and what we could manage, but I could still care for my children alone, for significant lengths of time and co-parent for even more of it.
As I left February behind, my decline accelerated as the precarious domino of systems in my body began to topple and I wondered if I had passed the point of no return.
I found myself lying in bed, my room as dark and silent as I could make it, eye mask and ear defenders still not enough to silence the world that assaulted my senses; no amount of stillness able to dampen the storm of disease within me. Drowning in a sea of pain, sickness and suffering that had been my sceptre for so many years, clinging desperately to the promise of God that I would not be destroyed, but with no idea if or how long I could live like this, on the brink of it.
Urgent and desperate prayer seemed to bring me back from the brink and slow the progress, but I was still unbearably sick and getting sicker.
Everything I was afraid of last Christmas had happened. I hardly saw my children, my wonderful parents stepped in and together with my husband took over caring for and educating, not only my children, but me and for about 3 months following a serious back injury, my husband too.
We were on our knees and there was quite simply nothing we could do to help ourselves. The fear of that time still rises up and grips my throat when I think about it. Part of me knows that we could find ourselves there again, and even worse.
I have no idea what we would do if anything happened to my husband, or my parents, who are not young and have significant difficulties of their own.
I don’t know how we would manage if I got that sick again, if it went on longer or continued to get worse. During those months we were all acutely aware that this was not sustainable, yet we had nowhere else to go, nothing to do but keep on going.
In my desperation I was more vulnerable than I have ever been before. I quite simply told everyone around us in whatever way I could, that we were in crisis and if God didn’t step in my family were not going to survive.
A dear friend took on the task of advocating for us in my church, both for urgent and desperate prayer and for as much practical help and support as she could muster. We were still drowning, but at least others knew about it.
It was in August that I started to feel the promise of improvement licking at the edges of my consciousness. So tiny and fleeting are the signs of change that it is very hard to pin them down.
It could be a slight clearing of the mental fog for a short period, followed by days of being back in the depths. But then it comes again, ever so occasionally and you begin to wonder if these glimpses aren’t coming a little more often.
It’s so scary to start to hope that the crisis might be lifting. You’re so desperate for it, but so terrified of hoping on it and having it snatched away.
We did all silently begin to notice the changes though, no one looking directly at it or daring to say it out loud for fear of frightening it away, but a little exhale escaped every once in a while.
And then all at once God spoke and the danger lifted. I found myself suddenly able to be out of bed and with my children for chunks of time. Oh, the bliss of hearing them laugh and hug me and say my name. Of cutting cookies with them on one day, and watching a favourite movie another.
I have no doubt in my mind that it was a divine and miraculous intervention. I hope I will be able to write about it properly some time, but it is still so confounding and so holy that so far that has eluded me.
I don’t understand why this incomplete answer to my prayers. I don’t understand why now after almost three decades of desperate prayer and petitioning.
What I do know is that this year God has brought me back from the brink. He has snatched me from the jaws of death, and given me a hope for a brighter future, that I have never had before and cannot explain.
I still have ME, and I am still extremely sick and disabled, but inexplicably and in the face of a very poor prognosis, I believe this will not be forever. I believe that he will finish what he has begun, although when and why not now are painfully unanswerable questions.
This is why I have spent the last few months planting this gratitude deep inside me, jealously guarding and treasuring it. I feel like I have been raised from the dead and I want to savour every second of it. I want to hold it on my tongue and truly taste it.
And yet here I am wondering again, ‘is this really my life?’ I have slipped back and life feels so very precarious again.
One cold after another has snatched so much away from me, and although between each one I have seen a promising upturn before the next one brings me low, they are taking their toll. Physically, but also emotionally.
I see my struggle mirrored in my children who cling to me, afraid that I will go to bed and never emerge again. Trying in their way to hold on tight to this new thing and refuse to let it be taken again. And yet we’re powerless, all of us. When the tide of ME rises, nothing can hold it back. You can only hold your breath and hope it recedes again.
I see it etched in pain and helplessness on my mother’s face, feel it in the tender way she brushes my face and turns away before the tears that threaten can be allowed to fall.
I see it in my husbands weariness. In his missing of me that reminds me how I am loved and all we are missing.
I feel it in the distance widening in my friendships again, as I am once more unable to keep up with the pace of normal life, even in my conversations. Connection fading as I increasingly struggle to articulate my life or follow theirs.
And still I hold on tight and fierce to what has been given to me. The conversations I can have, the cuddles, the mum-planning that I can do for my girls, and for my husband and parents. I direct operations and I can be present, physically and mentally, in a way I thought I might never be again.
A few weeks ago I sat in my wheelchair and followed my girls on their scooters up and down our street for 20 glorious minutes.
Two weeks later I sat in the car and went with them and my mum to a nearby soft play, where I sat on a sofa and drank tea and waved to my precious ones at the top of the big slide.
I have treasured these things in my heart, and in the days and weeks of crashing after these two excursions, I have fed off them, living from the joy of them.
I am so grateful to be alive, and to be here, and yet as another day passes in my bed with the noise and movement of my children in my room once again causing me to wince and collapse, the brokenness of my hope cuts deep.
This time last year I was afraid, and I was right to be. This year has been nightmarish. I look back and I don’t know how we survived it, except for the grace of God.
And I am afraid again.
New fears have joined the old ones. New consciousness of the true horror of what this could mean for our future is etched in my memory. A new knowledge of our vulnerability, our fragility, is alive and perches in my mind like an albatross.
And as I look back over 2017, I need to mourn again.
We have lost so much this year, it has been traumatic and devastating for every one of us and I need to let myself – let each of us – grieve, process, weep.
And also, there is peace. And there is hope. It is foolish and irrational and I cannot explain it. But I will not relinquish it.
We survived. We are wounded and we are scarred. We are forever changed and still so far from understanding. But we survived, by the grace of God. And by the grace of God, we will.
I can’t believe this is my life. It is tragic and small, limited and painful. It is precious and breathtaking in it’s beauty and it’s glory. It is death and it is life.
I can’t believe this is my life.
We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. For we who are alive are always being given over to death for Jesus’ sake, so that his life may also be revealed in our mortal body. So then, death is at work in us, but life is at work in you.