It’s #carersweek and I have a fundamental dislike of and difficult relationship with the word ‘carer’ itself. It’s a soft whisper of a waft of a word, with its long ‘aaaair’ sound drifting gently through it’s middle.
Care work, in my experience, is anything but gentle and ‘air’ is the very thing it can deplete you of, if you’re not careful.
I’ve just read a very poignant post by
and it’s full of stats which crackled and lit up in vivid, pink neon when I read them. Numbers that I’m usually avoidant of reading and am, instead, head down hustling for work to ensure that I keep earning. Only 3% of women with a disabled child work full time.I can remember the very first time someone referred to me as a ‘carer’ and how much resistance this brought up inside me. He is three years old; just let me first be his mother, damn it. Is what I felt inside. Being called carer felt like a very sticky label which I wasn’t ready to wear on my chest, my heart still very much adjusting its rhythms to a new and tumultuous version of mothering at the time.
Care work is a Marathon des Sables* of the soul and absolutely the most giant endurance event that my body has ever been urged to survive. It’s no coincidence that there’s a one metre long wooden sign with the word TENACITY daubed across it on my wall. I’ve run miles and miles and miles to give me the strength in body to keep pace with the caring work.
I don’t run nearly as many miles on stony trail paths now as I once did, early on in this caring journey. Back then, I swallowed the big and confusing emotions down whole, swallowed them deep and to simmer away in silence. Rather than write them up and out of me as I’m doing now, I took them with me and instead ran miles of solitary miles to shake the emotions and sensations away kinetically and into something else. This only partially worked and for a time.
The truth is, I often felt I had nobody to share these feelings with, no safe space to take them to. In the intervening years, I’ve learnt a lot through reading about how bids for connection can be shut down and the multiple ways that connection is lost in a single moment of conversation through various strategies including diminishing, distracting, one-upping, cheerleading. The facts often proved to be too difficult a listen for people early on and I very quickly stopped sharing.
I feel ready now to write about my own gritty, messy and at times glorious experiences of caring. It’s taken me eighteen years of being a carer to arrive at this decision. An entire childhood has passed. And now the journey of care through adulthood is creaking into place. This is a clunky and exquisitely uncomfortable process I’m finding so far. Very much uncharted territory and arriving just when the strength in my muscles is noticeably fading.
Finding this platform and discovering that others are here and sharing their stories of caring too, this is buoying me onwards. I’ve discovered, firstly,
and her magical writing has signposted me to whose luminous book Twelve Moons sits bedside at present. Following Caro’s writing on Substack has illuminated the way towards Penny’s words. What a fabulous chain of connective pearls.This is the first post I’ve made of Past Caring and I’m excited to see how it evolves. For now, with client photographs to edit and new books to order -
’s book Tender being one of these - I need to post and go get on with my work day. Clinging to the 3% stat in my mind …*Marathon des Sables is a brutal, seven-day ~250 km ultramarathon, which is approximately the distance of six regular marathons held each year in Morocco. Once upon a while ago I may have been tempted to enter it. Before I realised I was already running a version of it in my day to day caring life that is!
Good to read your words Sarah and I’m looking forward to being part of your journey