07-01-2022

Collaborative art science exhibition highlights the multi-sensory nature of fatigue

ENSNARED, a collaborative arts and neuroscience digital exhibition, highlights the multi-sensory nature of clinical fatigue, going beyond the stigma of just ‘feeling tired’.

Imagine being able to run a marathon but not be able to brush your teeth. This is the challenges being faced by people living with long term fatigue every day. A new digital exhibition, developed with artists, neuroscientists and people living with fatigue, highlights the complexity and challenges of living with fatigue.

The new series of artworks presented as a digital online exhibition, entitled ENSNARED, capture stroke survivors’ own descriptions of their post-stroke fatigue to express the visceral reality of fatigue through narrative, metaphor and artistic media.

The work was created by a team of artists led by artistic director Sofie Layton, and neuroscientists Dr Anna Kuppuswamy and Dr William de Doncker, Institute of Neurology at University College London. It sought to find new ways to understand stroke survivors’ experiences of fatigue, moving beyond words.

Dr Anna Kuppuswamy, leading expert on post-stroke fatigue, highlighted the need to further understand the complex nature of clinical fatigue: “There is still a lot we don’t know about the neurological basis for long term fatigue. This work has enabled us to bring in the valuable insight of patients with lived experiences to enrich and shape our research.”

Artist Sofie Layton ran a series of narrative workshops over five months with stroke survivors. The participants explored what fatigue felt like for them through different artistic techniques. This included moulding their body out of clay with their eyes closed, embossing images of MRI brain scans, and embroidering their own metaphors for fatigue.

The stroke survivors’ narratives and metaphors then inspired the artworks throughout their different iterations. The final digital exhibition includes a multi-sensory animation entitled ‘Inescapable’; a dramatized photography series which brings metaphors to life; a short film which reimagines the shower as a place of imprisonment; and a soundscape developed using the voices of stroke survivors interspersed with a perpetually tuning radio.

Sofie Layton reflected on the impact this of the project on her own perceptions:

“This work has really challenged my understanding of fatigue. These people live with such a complex condition and yet the stigma associated with fatigue creates further barriers for them. It is my hope that this work becomes a gateway for more people to understand that fatigue is not simply feeling tired.”

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