This year, I:
- Survived my 10th year with ME/CFS
- Raised $2000 for homeless ME patients
- Wrote 50000 words on my memoir
- Created the Severe ME Bedbound Activity Masterlist
- Saw my disability writing reach further than ever before
- Did more advocacy work than ever before
- Looked after myself as well as I could
- Looked after other people as much as I could.
And the decade was pretty memorable too, even if most of the memorable bits happened when I wasn’t so sick. I lived in three countries; I got a degree in Chinese; I had poetry, short stories and translations published; I performed my work on stage. I sang in choirs and celebrated festivals. I reclaimed my autism and came out as bi. I got married. And on and on under the glitzy bits, the fight. I got twelve of my fifteen diagnoses in the last 10 years. I saw more doctors than I could possibly remember. I got sicker and sicker, chasing answers wherever I could find them. And eventually, I retreated to my bed, and adapted to an entirely new life.
I’m writing all this out because when your existence is a well-worn groove between the bed and the toilet, it’s important to remind yourself that accomplishments do happen. Last year I made three New Year’s resolutions: to spend a week or two in bed, to start doing image descriptions, and to teach my carer how to recycle. I rather overshot the first one, as I relapsed and spent an entire year in bed, and we ended up getting a new carer who knew how to recycle by herself. But I did do the image descriptions. Despite being stuck in bed, despite feeling powerless to effect the world, this year I moved the dial just a tiny bit towards change.
My New Year’s Resolution for 2020–for the whole decade to come–is simple. It’s “be more kind”. 2019 was the year I realised the key to overcoming most things is compassion. It was the year I starting trying to be there for the girl inside who was hurting. And that self-love, that commitment to be kind to myself, gave me the strength to go out and help others. I’ve come to believe that being kind is one of the most important things we can do. And kind doesn’t mean passive and it doesn’t mean fluffy. Kind means fighting for what is right. It means being an ally when allies are needed. Worn correctly, kindness is a shield.
In the decade to come I’m going to be kind to everyone who needs it, including myself. I have lots of other goals, of course, but it seems to me just about all of them have the same first step: being kind. Being kind is how I’ll combat my mental illnesses. Being kind is how I’ll cope with being stuck in bed. It’s how I’ll write my book and do my advocacy work and look after the people I love. It’s how I’ll help turn the world towards change.
Happy New Year, everyone. And a happy new decade. May it treat you with the kindness you deserve.
❤️
Sarah