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Encephalitis: time to understand
In Context
Alessia and Barbie in a red dress, by Marco Pirani, from Italy. The photo, he explains, is “my wife in red with her favourite doll. In her second life after encephalitis she has experienced a sort of new childhood”. The reference to “life after” is commonly adopted by people with the condition, so great is the division between their identity (with many patients also experiencing memory loss) pre- and post-encephalitis. Paul Wicks (UK), runner-up in the digital art category with The Boxer and shortlisted for his photo Just Because, spoke about how the focus required for the artistic process occupies the mind with something other than the illness. With no artistic inclination before encephalitis, he is now an art school student. The Boxer is a poignant comment on how hidden disabilities do not convey the enormity of how hard everyday tasks can be. In the Beginning by Leslie Padgett (USA) gained the most votes in the digital category. Her video of her teenage son with his “awkward behaviour, strange dialogue, and fixed look on his face”, became for his family a strangely prophetic reflection of the coming months. The warped and distorted effect in the stills inadvertently capture the enveloping paranoia that he had started to, and would continue to experience during the worst months of his illness. A beautiful alliance exists between art and science; the opportunity to communicate by non-verbal means is cathartic and healing for people coping with long-term and fatal illness. Art therapy has long been a tool to address and process psychological trauma for the simple reason that it can work. If people affected by encephalitis can break the silence, then this exhibition has made a huge impact, and has hopefully set a precedent for years to come. It is time for others among the zebras to be seen and heard.
Ava Easton and Lizzie Kehr Lancet Neurol 2017 Published Online January 25, 2017 http://dx.doi.org/10.1016/ S1474-4422(16)30393-3 #ShowYouKnow exhibition Saatchi Gallery, London, UK From Dec 12, 2016 to Jan 5, 2017 See In Context Lancet Neurol 2016; 12: 1212 See In Context Lancet Neurol 2017; 2: 111 For more on The Encephalitis Society see https://www. encephalitis.info/ For the competition entries see https://www.encephalitis.info/ awareness/world-encephalitisday/ For more on Neuro Film Festival see http://patients.aan.com/go/ about/neurofilmfestival
Jules Morgan
Gordon Baxter
How many people know about encephalitis? Probably not that many. It is relatively unknown in the public sphere and, because its complexity, requires a multidisciplinary collaboration for effective diagnosis and treatment. “So far we have reached about 20 million people since the launch of World Encephalitis Day (WED) in 2014, but we need to reach more”, Ava Easton (Chief Executive of The Encephalitis Society, North Yorkshire, UK) announced at the press launch of #ShowYouKnow exhibition at the Saatchi Gallery, London, UK. For WED 2017 on February 22, the Society plan to light up monuments and buildings in the UK to promote their #Red4WED campaign. Awareness is the first step to a better understanding of how encephalitis can devastate lives. #ShowYouKnow offers a platform to express the indescribable through artistic channels. The exhibition presents a collection of shortlisted competition entries submitted by anyone affected by the condition, often referred to as a silent disease because of its public invisibility. There are three categories: film, digital, and photography—offering those affected the chance to “tell the world what they thought they needed to know”, explains Easton. She told her team she wanted more than 65 entries. “Why did I come up with this random number? Because every year the American Academy of Neurology hosts a film festival inviting entries from those affected by brain disease. Last year they received 65. I wanted us to smash that, and we did! We had more than 80 entries.” So, what can we expect from this exhibition, housed in the education centre of the Saatchi Gallery? Nine short films play on a loop, including the winning entry by Lizzie Kehr (USA). Breathe through HE is about Hashimoto’s Encephalopathy in which the immune system attacks the brain and the brain fights back by swelling. A lyrical song accompanies a series of images that invoke, for Lizzie, the emotions stirred up by symptoms she experienced. She challenges the instruction given to doctors: “When you hear hoofbeats, think horses, not zebras”—because symptoms that mimic common illnesses mean rarer diseases are often excluded in diagnosis. Zebras exist, she says, and early detection and an accurate diagnosis are crucial to better the chances of recovery. Encephalitis deals a harsh blow; with a wide range of neuro-psychiatric symptoms, the way it affects each individual and their families is quite often unpredictable, disorientating, and devastating. The photo submissions reflect this confusion and despair; with titles such as Am I really here (Meghan Grey, USA); Fog (EG Kight, USA); Scream (Agnes Mezosi, Hungary); Isolation (Alexander Beard, UK). Each image tells a story, or captures a feeling, and most importantly provides some sense of connection and cathartic relief for the photographer. The winning entry is
Gordon Baxter
Exhibition Encephalitis: time to understand
Marco and Alessia Pirani with Alessia and Barbie in a red dress
www.thelancet.com/neurology Published online January 25, 2017 http://dx.doi.org/10.1016/S1474-4422(16)30393-3
1
Alessia and Barbie in a red dress, by Marco Pirani, from Italy. The photo, he explains, is “my wife in red with her favourite doll. In her second life after encephalitis she has experienced a sort of new childhood”. The reference to “life after” is commonly adopted by people with the condition, so great is the division between their identity (with many patients also experiencing memory loss) pre- and post-encephalitis. Paul Wicks (UK), runner-up in the digital art category with The Boxer and shortlisted for his photo Just Because, spoke about how the focus required for the artistic process occupies the mind with something other than the illness. With no artistic inclination before encephalitis, he is now an art school student. The Boxer is a poignant comment on how hidden disabilities do not convey the enormity of how hard everyday tasks can be. In the Beginning by Leslie Padgett (USA) gained the most votes in the digital category. Her video of her teenage son with his “awkward behaviour, strange dialogue, and fixed look on his face”, became for his family a strangely prophetic reflection of the coming months. The warped and distorted effect in the stills inadvertently capture the enveloping paranoia that he had started to, and would continue to experience during the worst months of his illness. A beautiful alliance exists between art and science; the opportunity to communicate by non-verbal means is cathartic and healing for people coping with long-term and fatal illness. Art therapy has long been a tool to address and process psychological trauma for the simple reason that it can work. If people affected by encephalitis can break the silence, then this exhibition has made a huge impact, and has hopefully set a precedent for years to come. It is time for others among the zebras to be seen and heard.
Ava Easton and Lizzie Kehr Lancet Neurol 2017 Published Online January 25, 2017 http://dx.doi.org/10.1016/ S1474-4422(16)30393-3 #ShowYouKnow exhibition Saatchi Gallery, London, UK From Dec 12, 2016 to Jan 5, 2017 See In Context Lancet Neurol 2016; 12: 1212 See In Context Lancet Neurol 2017; 2: 111 For more on The Encephalitis Society see https://www. encephalitis.info/ For the competition entries see https://www.encephalitis.info/ awareness/world-encephalitisday/ For more on Neuro Film Festival see http://patients.aan.com/go/ about/neurofilmfestival
Jules Morgan
Gordon Baxter
How many people know about encephalitis? Probably not that many. It is relatively unknown in the public sphere and, because its complexity, requires a multidisciplinary collaboration for effective diagnosis and treatment. “So far we have reached about 20 million people since the launch of World Encephalitis Day (WED) in 2014, but we need to reach more”, Ava Easton (Chief Executive of The Encephalitis Society, North Yorkshire, UK) announced at the press launch of #ShowYouKnow exhibition at the Saatchi Gallery, London, UK. For WED 2017 on February 22, the Society plan to light up monuments and buildings in the UK to promote their #Red4WED campaign. Awareness is the first step to a better understanding of how encephalitis can devastate lives. #ShowYouKnow offers a platform to express the indescribable through artistic channels. The exhibition presents a collection of shortlisted competition entries submitted by anyone affected by the condition, often referred to as a silent disease because of its public invisibility. There are three categories: film, digital, and photography—offering those affected the chance to “tell the world what they thought they needed to know”, explains Easton. She told her team she wanted more than 65 entries. “Why did I come up with this random number? Because every year the American Academy of Neurology hosts a film festival inviting entries from those affected by brain disease. Last year they received 65. I wanted us to smash that, and we did! We had more than 80 entries.” So, what can we expect from this exhibition, housed in the education centre of the Saatchi Gallery? Nine short films play on a loop, including the winning entry by Lizzie Kehr (USA). Breathe through HE is about Hashimoto’s Encephalopathy in which the immune system attacks the brain and the brain fights back by swelling. A lyrical song accompanies a series of images that invoke, for Lizzie, the emotions stirred up by symptoms she experienced. She challenges the instruction given to doctors: “When you hear hoofbeats, think horses, not zebras”—because symptoms that mimic common illnesses mean rarer diseases are often excluded in diagnosis. Zebras exist, she says, and early detection and an accurate diagnosis are crucial to better the chances of recovery. Encephalitis deals a harsh blow; with a wide range of neuro-psychiatric symptoms, the way it affects each individual and their families is quite often unpredictable, disorientating, and devastating. The photo submissions reflect this confusion and despair; with titles such as Am I really here (Meghan Grey, USA); Fog (EG Kight, USA); Scream (Agnes Mezosi, Hungary); Isolation (Alexander Beard, UK). Each image tells a story, or captures a feeling, and most importantly provides some sense of connection and cathartic relief for the photographer. The winning entry is
Gordon Baxter
Exhibition Encephalitis: time to understand
Marco and Alessia Pirani with Alessia and Barbie in a red dress
www.thelancet.com/neurology Published online January 25, 2017 http://dx.doi.org/10.1016/S1474-4422(16)30393-3
1