It’s the last day of 2019. I've been lent a friend's London flat for New Year. I’ve just jumped onto an overground heading West to Highbury for a last coffee with my brother before he flies back to New York. I’m enjoying how good I'm feeling today. Slightly more energy moving through my system. A few lose plans for the evening but nothing definite. Perhaps it’s old habits; London can bring a return of the speediness I used to live by... but like a reflex I'm opening up Facebook in a brief moment between stops.
And there it is.
"Jessica, we care about your memories on Facebook...we thought you'd like to look back on this post from 4 years ago..."
I had completely forgotten. It was 4 years ago to the day my life changed. I was surfing in southern India, and as I paddled out to catch the waves, my body stopped behaving normally. I struggled to move my arms, as if something in me had snapped broken and my cells were cutting out. I somehow carried my surfboard up the steep cliff side path and collapsed. I woke up the next morning with the virus that turned into ME/CFS. That was the last morning my body had any real power.
I realise how for those who live with chronic illnesses, the grief never completely goes away. It can knock you sideways at any time. There is a sense of bereavement for the life you used to know. And the anniversaries can ambush you just as this one did.
The day improved. I said a proper goodbye to my brother. And ended up spontaneously heading to an event last minute at a yoga centre in Camden, bumping into some important people from my past life. It was perfect... there was nowhere to sit down in the packed hall and as I moved towards one of the few remaining empty cushions on the floor, there was Claudina, who used to perform with me. It was a special and uncanny afternoon.
I made it home. Despite three different invites, including something low key around the corner, by the evening my legs weren't taking me anywhere. No more juice. The bells chimed midnight as I had a little weep from my bed on my own. A few important messages. It wasn't so much that I was in my pyjamas while it felt the whole world was partying or that I was alone, as much as how much that freshly-forgotten-about anniversary had shaken me.
If you know anyone with a chronic condition, even if they don't know it yet themselves, it's likely that they are living with at least a small amount of grief.
An ME/CFS Thriver