Sixteen people are diagnosed with encephalitis – severe brain inflammation – every day in the UK, yet most of the public have never heard of it. Based on the real life experiences of writer and director Annie Eves, whose sister Grace was diagnosed with the condition at just three weeks old, Tracing Grace aims to open our eyes to the existence of encephalitis and the challenges of living with its long-term impact.
Making such a personal piece about such a serious but poorly-understood condition is a brave move, and the production has benefited from the input of Dr Ava Easton, CEO of the Encephalitis Society. As explained at the beginning of the show, the cause of encephalitis is unknown, although it’s related to infection in the body. Its effects are equally mysterious and unpredictable. In the case of Grace, who we follow from childhood through to her current age of 18, it’s described as a “headache that never stops”, punctuated by distressing fits and angry, screaming outbursts. Her family – mum, dad and Annie, portrayed both as a child and an adult – bear it all with loving fortitude, even when things turn ugly and violent.
We witness Grace’s towering fury at not having exactly the right sandwich filling (Laughing Cow cheese spread and jam), and her frustration at being unable to understand why she isn’t like other kids. We also meet Annie’s well-meaning but daffy social worker, nicknamed Mental Gentle, highlighting how support for families can fall woefully short in the face of such difficult circumstances. Yet despite the life-threatening fits and the increasing challenges of caring for Grace as she grows into adulthood, the play ends with a family decision to keep her at home rather than sending her into residential care. I cannot help but wish them all well for the future, whatever that looks like.
- KA
The current run of Tracing Grace at Paradise in the Vault has now finished. https://tickets.edfringe.com/whats-on/tracing-grace
More information and support is available from the Encephalitis Society: http://www.encephalitis.info/
Q &A with writer and director Annie Eves: http://www.encephalitis.info/awareness/tracinggrace/
Brain on Fire – a Naked Scientists podcast focusing on brain inflammation: http://www.thenakedscientists.com/HTML/podcasts/show/20150324/