I did cartwheels on Sunday.
Even as I was doing it I had no idea if I still could.
It was stupid really, but my girls asked me to show them how to do a cartwheel and for the sake of a ‘wow’ from my daughters I gave it a go … and to everyones astonishment I pulled it off!
So I did a few more, and I chased them and raced them, and when I couldn’t stand any more I sat on the grass and tried to catch them in my arms as they ran past squealing and laughing with delight. It was beautiful. It was stupid. It was fun.
I was so proud of myself and I immediately wanted to post it on Facebook – a frivolous post laughing at myself for being old and daft, and for being so pleased to be able to heave my legs over my head in a graceless version of childhood exuberance. Such a silly thing but I thought it would make my friends smile.
I started to write my silly, funny post about lame cartwheels and giggling girls, but I hesitated.
I faltered and I didn’t post.
I was afraid that people would read it and think I’m not as sick as I say I am. That I can’t be if I’m doing cartwheels.
I was afraid of judgement, of misunderstanding, of harming my credibility.
What I didn’t plan on posting was how I spent the rest of the day in bed.
And the next day.
That I was in so much pain I couldn’t sleep, that it was the kind of pain that invades every part of your consciousness.
You try and cordon it off in one part of your mind, try to keep a small portion of your brain so you can function …
… So you can talk to your husband about how he’s doing, about life and family and kids.
… So you make yourself a drink or go to the loo.
… So you can listen to your children tell you about the day they’ve had without you, while you rested, while you lived through the pain and tried not to let it consume you.
I wasn’t going to post about how I spent an entire day in bed in the hope that I’d manage to be upright long enough in the evening to cook a meal for visiting family because I didn’t want them to think less of me for doing nothing and leaving it all to my husband. That afterwards I was so sore and stiff that I struggled to stand or to walk and I still tried to hide the cost behind a smile and a wry comment.
I wasn’t going to post about being awake and writing this at 10 past 2 in the morning because when you’ve pushed your body past it’s limits with cartwheels and races and cooking and polite conversation, it is unable to stop pushing despite the exhaustion and the pain and you just have to wait for the adrenaline to burn itself out and then live through the inevitable crash and burn.
I wasn’t going to post that. That wouldn’t make my friends smile.
And then it was the 8th August.
The day I’m supposed to remember those who are severely affected by ME.
Those that we all, to our shame, try to forget because it’s too frightening to remember.
Those who can never do cartwheels just to hear the wow from their daughter, even if it will cost them dear. Who can never race them just to hear their delighted, breathless giggle.
A day to remember those who would love to have a burst of careless, unwise, stupid joy.
Who would gladly pay the price of a few days of pain and isolation just to be touched, or see the sun, or hear that beautiful noise without it being agony to them.
So I will write about my cartwheels, and my pain, because both are life for me.
I did cartwheels and ran with my girls, and it was silly and thoughtless and dangerous and beautiful.
It was a joy and a privilege.
And it hurt and it hurts, and I don’t know when it will stop hurting.
And when it does, I’ll do it again, simply for the joy of that wonderful breathless giggle that makes our hearts sing together, and simply because I still can.
And I’ll try to find a way to honour the pain. And I’ll try to find a way to honour those in more pain.
To be grateful for the possibility of rare moments of carelessness and the joy they bring.
To be gentle with myself in the pain they also bring.
Always remembering that the cost may be high, but the freedom is priceless.
I want to let my pain remind me of my freedom, not my limits.
But it’s hard. And it hurts. But I try.