‘My personal lockdown has been much longer’: on chronic illness, before and after Covid

I’ve been inside my cramped terrace house for nearly a year now. There haven’t been walks outside, or trips to the shops. Every morning, I wake into a day the same as yesterday. I reach out a hand to the cat who I know will be curled by my right side, listen for the creak of my son climbing down from his bunk bed. He will come and bundle himself under my covers, and we will begin again, another day juggling his schoolwork and my writing work, all conducted mostly from my bed.

I remember, dream-like, two weeks in the summer last year when it felt safe enough for my partner to fly over from Denmark, after six months apart. We drove to quiet places and he pushed me in my wheelchair. I wept, happy to see him and the green trees, and to eat picnics on the warm ground, a family again. It has been six months since then, and so we sit each day in front of iPads, touching fingers to the screen, baffled and smiling to still be in this strange, unforeseen predicament – falling in love, still, because distance does nothing to halt that. My life is one of pain, fatigue, activity, laughter.

Still life of a leaf with watercolours

‘I have learned to put good in my days: books, words, art, play.’ Photograph: Courtesy of Josie George

Before the pandemic, life here was a little different, but not a lot, not really. I would sometimes get myself out the door and on to my mobility scooter. I would go to the community centre around the corner and sit propped up with the old people, my 39 years feeling childlike to their 80 and 90-odd. Or I’d go to my best friend’s house and manage a couple of hours on her sofa. In both places, I’d be handed cups of tea I hadn’t made and think, “this is freedom”. But long weeks went by when I wasn’t well enough to leave my house at all. My personal lockdown has been a much longer one, chronic and persistent, much like my unwellness: a confusing and disabling jumble of illnesses that stretch back to my childhood. This includes severe ME and a determined deterioration of my autonomic nervous system and its many functions.

This last year, I have experienced longing and heartache and exhaustion, anxiety, despair even, all alongside a body that hurts and limits me – and yet, I am happy. There is so much to be happy about. I have learned to put good in my days, in the way you might arrange favourite things on a shelf. Books, words, art, play, stretching my complicated body, documenting my thoughts: I haven’t run out of good things to do yet, and I don’t suppose I ever will. Having my son at home has been tiring and wonderful; a reclaiming of something that I almost thought I’d lost. It has made my mothering oddly more accessible. Supporting him at home? Now there’s something I can do. Supporting him outside was much harder.

“My life is much like yours now!” people have said to me, before going out for a walk. I have had to smile at that. I cannot help but see how fresh all this is for some people, how new: this awakening to the unpredictability of life, to the loss of control.

Now, all people talk about is the future, about “getting back to normal”. I cringe at this. Long illness has taught me never to set my gaze there, on “And then I got better and lived happily ever after”. I have learned not to treat life as a waiting room; this is my life, now. Instead, I look at this new day in front of me: what hope does it have in it?

Being hopeful is really just an understanding that you can do a little something good today, and a little something good tomorrow, and the day after, and that, together, these things will accumulate relentlessly. This is do-it-yourself hope. It is different from a wish. It is active and powerful, and entirely within your control, whatever else is happening. One day soon, I will get wheeled into a clinic to get the vaccine; but I know that it is only one of many, many things I can do to bless my future.

My life won’t change all that much, after; I will still wake to a day that looks much like those before. But I have changed. I feel a new resilience. Having much of what was left to me removed has shown me what endures, and what I can still grow. I believe this is what feeling ‘at home’ could mean, long beyond all this. Most importantly, I know it is what will sustain me – could sustain all of us – through all the years ahead.

A Still Life: A Memoir by Josie George is published by Bloomsbury on 18 February.


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