The Stillness Shall Be the Dancing

February 20, 2021

 

It’s the 20^th of February 2021 and I just tried to walk around the block.

I made it one side of the square, perhaps two, if you count the slow head-bowed retreat to our front door.

 

After eleven months of illness, you’d hope that the invisible line that stops you being able to live the life you once knew might have faded a little. And in truth some days it does. I walked for a whole twenty minutes a few days ago. I sat on a bench I had actually walked to myself and cried for the simple joy of it being the first time in almost a year I had been able to walk here. Greenbank cemetery in Bristol is full of grey statues of angels; that day they looked brave and defiant, their faces raised to the clear sky.

Walking there was a risk. I knew it could mean I got hit by a harder STOP line in a few days, but I had woken up in tears and needed air and freedom.

The cruelty of this illness is that you enter a brutal economy with the things you love doing. It is a kind of violent quid pro quo. If you do this: then this. If you do THIS: then THIS. Initially in the first few months of my Covid infection ‘the this’ would be sitting up, showering, holding a conversation. Then ‘the this’ became a walk around the block, cooking a meal or speaking to a friend. All of these portions of fun cost you in days of exhaustion, pain and in Long Covid’s special offering of scarier symptoms: breathlessness, chest pain and chest tightness.

If for one second you remember climbing mountains then the wave of grief is unbearable. You have to change the contours of your expectations. Your mountain is the discipline to not walk too far too soon. Your discipline is to get as much from sitting in a garden as your previous self would have got from a five hour hike.

The healing process is absurdly slow, up and down, squiggly and varied. I have knitted my way through it, cried my way through it, netflixed my way through it, audio booked my way through it, always hoping I’d awaken from the dream and have arrived somewhere different.

Because of that bench and the angels I now can’t walk around the block. I know that with a few days or weeks of rest I will be able to. If I want to fully recover then I need to stop defiantly visiting the angels when my body isn’t ready yet.

My partner reminds me of the minute changes for the good. There is progress. There is hope.

I agree but I also have a quiet nagging that asks: what would you do if this was you now? Could you be happy in this?

Apart from the pain and physical discomfort – being exhausted in an ME / CFS way is not relaxing, it is like being pinned to the floor by a sweaty goat – then the slowing down and the staying in one immediate vicinity isn’t altogether bad. You have to find ways to be proud of your day even if you were only able to leave bed for five minutes. You have to find ways to be happy when you weren’t able to get down the stairs to say hello to a friend who visited. You have to find ways to nurse your pain when you can’t join people ‘for a stroll, a breath of fresh air, a short walk’. You have to find ways to swallow your panic when someone discusses their busy work day and then asks how your day was, or your feeling of disappointment when someone says for the tenth time, ‘well I hope you feel better tomorrow’.  In other words, you have to do a lot of work around acceptance and self-love.

Oddly before I got Covid I spent some time in early 2020 (before the world changed) with an old friend who has been living with ME for a few years. For the first time, perhaps just because we had some real time, I got an insight into what she’d been going through. We sat in a pub in Finsbury Park and I cried hearing about it.

I thought I had understood.

Now I see all the quiet courage I missed. We had walked to the pub, she had gotten up in the morning to say goodbye and walked me to the tube: all the time treading the tight rope of her own brutal economy; her invisible stop line looming. If I had actually understood I would have paced that weekend very differently.

I have learnt to truly appreciate the friends and family who are able to step outside of their normal, faster rhythm, to quite literally stop, and sit with me a while in the land of sickness: the land of stillness. The ones who can stay in that place without pity, and instead want to be there for the simple reason of wanting to spend time with me. I have learnt that some people find this impossible, and so have had to accept it will be impossible for me to be close to them for a while.

I’ve been thinking about dancing. How would I dance now?

Recently I had an image of being on the dance floor with my friends who have always been so brilliant at bouncing around. We are all relieved and happy the pandemic has ended. There would be strutting and grinding and jumping and I am there too: my two feet firmly on the ground, my arms swaying very slowly from side to side, or perhaps I’d needed to sit, so there’s a chair in amongst all the bodies. And the ones that love me, they have made space, making sure I don’t get shouldered by the mosh pit, and maybe even with some of my closest, we start a little revolution, where we all sway slowly for a while until the whole dance floor is doing the same. And in that moment, I feel proud and cool for sharing with the room a window into a different way of being.