Why I don’t clap for the NHS

This is a guest post by my sister. As you read it, you’ll see why I asked her to write this. (The tl;dr – she writes like Terry Pratchett. Cosy humour thinly veiling extreme anger at stupidity and injustice.)

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Let me paint you a picture of my quarantine (It’s not lockdown.  Our doors are not locked). I live in a good-sized semi with my husband and three children (14, 12 and 9).  We have an allotment, a large garden and a park opposite. My husband is working from home, all but one day a week when he walks up the road to work.  My girls are both at secondary school and are sent daily lessons, which they do on their laptops, our only last-minute before-quarantine-hits, panic-buy. The youngest also gets sent work daily.  I have a hands-off approach; they just get on with it and peace (largely) reigns. Most weeks we have a delivery from Ocado. We’ve recently ordered online such things as clothes, flour, a microscope, sheet music, tent pegs and an entertainingly large rubber mallet.  We have various musical instruments. We have a well-stocked art cupboard. I love to draw and write. We are cosy quarantiners. In fact, it occurred to me the other day, we are the Eloi, and out there in the unknown, Morlocks are working to deliver us our every need while we stay cosy, safe and entertained.

So far, so idyllic.  But what of the crisis?  What of the looming threat?  How do we deal with the fear and the uncertainty of what the future will bring?  Um… well, we don’t. Mostly. Because, other than the fact that our movements are restricted, for us, and for me and for my husband in particular, the whole crisis/looming threat/fear/uncertainty thing?  Well, for us that’s business as usual.

Just over five years ago I was diagnosed with a type of sarcoma – a lumpy thing in the connective tissue around my intestines.  Surgery got rid of it, but there’s no effective treatment which stops such things coming back. I was given a 40-50% chance of it returning to finish me off.  The children were 4, 7 and 9. I learned to live with it, and it’s simple, really; simple, but not easy. My basic approach is a dialogue I have with myself. Initially it was more or less constant.  It goes like this:

Me 1: You’re miserable!  What are you afraid of?
Me 2: I’m afraid of losing my life.
Me 1: (a little patronising) But you have your life right now!
Me 2: Oh yes, I do, don’t I?  I’d better get on and enjoy it then hadn’t I?
Me 3: (even more patronising, verging on smug) Yes, you had!

And that’s it, really.  So, with that in mind I learned to live a day at a time, or as I say regularly, ‘It’s Today’.  Because it’s enough, or it can be. And I don’t think it’s hurt for my children to grow up with me constantly telling them that this is a day we have been given to enjoy and that each day is a gift.

But last year my cancer popped up in my liver.  I had chemo and then surgery and I have scans every three months.  I haven’t asked my odds because I don’t want to know, and actually I know anyway, secretly, without even admitting that to myself.  I had begun, after four years, to send out tentative tendrils of thought into the future; perhaps I would live to see my children grow up, perhaps I would grow old with my husband.  I had to prune those tender shoots back to ground level, with an extremely sharp pair of mental secateurs. I had to reduce my world back to a small bubble of relative certainty that is this single day, sent like a gift for me to enjoy.

So, Coronavirus?  It feels like a drop in the ocean, and any fear and uncertainty I feel about that gets put behind the thick, heavy velvet drapes somewhere over my right shoulder, behind which lurk abject fear and dread and sorrow and all that stuff.  Those things are behind a curtain rather than anywhere more secure, an iron strongbox, say, simply because they are always present. They’re too strong to be buried, and yet somehow my mind’s worked out a way of loving life alongside them. I laugh, I giggle, I’m light-hearted, I have many, many things I love to do, and I can do them with full awareness of the lurking darkness and yet with, often, a curious detachment which leads me to be able to think of times when I won’t be there for my children with total lack of emotion and mere practicality of mind.

And so, I feel like I don’t belong in this crisis.  Fear of death? Box ticked. Awareness of the preciousness and precariousness of life?  Ditto. Grateful for the NHS? Profoundly and constantly and many, many thanks delivered wholeheartedly and in person, so that the whole ‘clap for the NHS’ thing seems rather juvenile and heaven knows what the neighbours think when we don’t join in.  But when they are no longer clapping and hollering and banging pans, I will still be smiling at my carers and taking them gifts of homemade jam and even sloe gin (with which they spiked their drinks in the local pub – well-deserved that day, having delivered the news of my liver metastasis and sat with me as long as I needed and this is a long parenthesesed bit but my wonderful consultant and the nurse specialist just sat and let me think and talk for a long time).  I will thank my carers again and again for the life that I have, the life that I’ve been given, as the most precious gift.

One final thing, which I have to add because it’s my best and most effective anti-depressant, happy-making, giggling-on-the-way-to-chemo technique for relative mental health: fanfiction.  I regularly disappear into the world of Stargate Atlantis, which is peopled by attractive and entertaining characters that are just itching to be taken on all kinds of hair-raising adventures and then brought safely and cosily home.  I started writing when I began chemo last year and I recently hit four hundred thousand words posted to fanfiction.net and Archive of our own, under the name salchat. When I write it’s as if the heavy velvet drapes and all the horrors they hide dissolve into so much black, bitter smoke and are poetically carried away on a bold, gusting wind of drama and excitement and pure, innocent silliness!

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Links to Sally’s fanfic (which is just as wonderfully written, but usually rather less harrowing – I can heartily recommend the one called “Harvey” as a starting point!):
Fanfiction.net
AO3