Reflection on ENSNARED – THE INESCAPABLE REALITY OF FATIGUE
S U R V I V O R
By Writer-in-Residence, Dr Joyce Datiles
December 2014. The day after Christmas. To those who met me afterwards and those who knew me before, those who noticed a change in me and those who never knew what I used to be: that was the day my arm and face went numb and my brain was set on fire. I was in my early 30s, an athlete. Even after recovery I was in denial that I could have had a stroke. I never saw myself as a stroke victim. Until this morning.
I attended ENSNARED: THE INESCAPABLE REALITY OF FATIGUE, an art project and animated film created by artist Sofie Layton in conjunction with several stroke survivors and scientist William de Doncker of UCL Neurology. Sofie had conducted several workshops during the Covid-19 lockdown that involved online gatherings of two groups of stroke survivors who expressed their chronic fatigue through metaphors: a hippo lurking in darkness that will sneak up and crush you, old bank vaults – the kind with dials and complex mechanisms – that shut you in and you can’t escape. Through sounds – loud roadworks – and colours – always bright neon ones. The shared pain and understanding of this unique fatigue that lingers and seizes, dictates and controls you after a stroke. I found myself sobbing in the silence of my room, my zoom portal a black screen with my microphone and video off so the world wouldn’t see as I mourned my lost time.
I had never associated myself, my identity, my new struggles of social anxiety with the term, SURVIVOR. I had never attached that label to my name. I kept the fatigue, the new anxiousness, the pain, the fright, the dread, the fears inside me. The collection of narratives, the visual responses and metaphors during the event all resonated. William spoke of what he called, ‘The Cocktail Party Effect’ and I found my head spinning with complete embracement and instant recognition of his descriptions. Chatting in the background and its overwhelmingness, the unceasing, pounding of roadworks. The other survivors describing that they tried to explain it to their friends as the worst jetlag you have ever had but still not cutting close. It is bound up with extreme trauma and grief, a mourning. Like you are constantly drowning or being choked to death by the cocktail party happening around you.
No one talks about it in this way, and so you are not aware that you should be communicating your pain. Everyone has said, “Oh, but you’re fine now, right? You’ve recovered. You look well. You look NORMAL.” But there is no going back to normal. There is no going back to what came before 2014, just as there is no going back to how things were before Covid-19. And the full realization of this fact came descending upon me with the force of a waterfall this morning as I listened and watched the metaphors that seemed to be my own mind speaking aloud – what should have been said years ago.
I was initially not able to attend this event and I am so glad I did. I didn’t know too much about it when I was given a ticket. I had no idea it was about an art piece showing the strength behind those who had endured a stroke. I had planned on spending the afternoon at other festival events and was going to write a poem.
I thought about Bloomsbury – how I knew every square, every tree, building, cobblestone. How I’ve grown so much here over the past ten years and more. So it was right that my healing begin here, where my heart always was.
And now I will say it. I survived. I am proud of this post-2014 me, the one who is battling the Cocktail Party Effect and the hippo in the night. I will say it with my name…it is my name.
Thank you to the creative and scientific team behind ENSNARED, and to the stroke survivors who shared their pain and their visions.