I’ll be 28 in a few weeks. It seems like an age when you should know things, handle them, stand - metaphorically, at least - on your own two feet. Except. I spent last night crying down the phone to my mother.
I’ll be 28 in a few weeks. It seems no time at all. No time at all since the terror of graduation and a first job I was terrible at and having my heart broken for the first time. Except. I spent last week writing a piece for the newspaper my parents read on Sunday mornings when I was small.
I have been 27 for 11 months and however many days. This year didn’t go how I thought it would. Better and worse. Better and worse. Will the next or the next or the one after that? No, no.
To be as disabled as I am is to have control of your life parcelled out to people you’ve never met and who will never know you. The doctor, the care recruiting firm, the dating agency. I am forever trying to claw it back; a decision made for myself here, a stand taken there. Sometimes I think I am succeeding, I can breathe a little easier. I feel in control - of my career, of where I’m going, of the small but vital details of how I live my everyday life. And then the dam breaks and the water is rushing again, seemingly higher than before. I find myself wondering whether this time it’ll finally flow over my head.
To be disabled and write about it, as I do, is to be at a networking event with industry bigwigs, being asked if your care is sorted yet. No, no. To smile and nod and say it will be fine and then, when the conversation has turned to rates of pay, wonder if next year you’ll even be able to leave the house and make it to this event or, for that matter, any other. To be disabled and write about it is to have other people know your experience while being entirely divorced from the reality of living it.
What I’m trying to say is this: to be disabled as I am, and write about it, is to live two separate lives.
Here is the first life: a book deal, a life full of adored friends who adore in return, trips to farflung places, the view from the flat, pieces in national newspapers, pub lunches, spending too much on books I never read, anxiety better than it has been in years, laughing until I cry over a takeaway and wine, rewatching the West Wing, gossiping about boys, walking to the South Bank, debating whether I need another adjective in a sentence.
Here is the second: fear that a new carer might be a bully, fear that a new carer might never appear, fear that you’re going to be looking for a new carer continuously until you die, fear that your health or ability will deteriorate before you’ve done all the things you want to do, fear of the next ableist encounter or the next denial of access, fear that one of these days you’ll find a problem that can’t be solved by sheer stubboness, fear that your luck will run out, fear that your friends will move on while you stay still, fear that the pain will one day become permanent. Fear, really, of everything.
What’s weird is that these two lives happen alongside each other without ever overlapping. The existence of the first life does not make the second any easier to deal with. But neither, somehow, does the second make the first any less joyful. They just exist, forever separate. Except. Except for the fact that they are both mine.
Perhaps this all makes me sound a little deranged. But maybe that’s ok. For sure, when these two lives make themselves evident in quick succession - almost, but not quite, colliding - I feel a little deranged. The day in May this year when my long-time PA handed in her notice hours before I went out for a meal to celebrate my book contract left me feeling, when I went to bed, absolutely nothing at all. I waited for some emotion to kick in, but nothing came, not even sleep.
Birthdays always make me introspective. I try to just see them as just another day - a chance to hear from friends and eat cake and have a few too many glasses of bubbly. But I’ve never been able to shake the sense that I still haven’t figured out something vital; something that, if only I knew, would make everything feel a little easier. This year, as 28 approaches, I wonder if the thing I haven’t figured out is how to live two lives. I wonder if I ever will.
Maybe at 29?
With love,
Lucy
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This is beautifully written, Lucy <3
Wow, Lucy. This totally describes the turmoil I'm feeling right now. I love how well you so easily put words to a mountain I have been trying to move. You are so wise, and I love reading your work.