Australian actor Hugo Weaving is best known for his work in movies such as The Adventures of Priscilla, Queen of the Desert (1994), three of The Matrix movies (1999-2003), The Lord of the Rings movies (2001-2003), Captain America (2011), and The Dressmaker (2015). He is less known for promoting awareness about his epilepsy.
His British parents were working in Ibadan, Nigeria, when Hugo Wallace Weaving was born in 1960, before returning to England a year after his birth. The family moved to Australia in 1976, where Hugo attended grammar school in Sydney and graduated from Sydney’s National Institute of Dramatic Art (NIDA) in 1981.
Hugo Weaving was diagnosed with epilepsy at the age of thirteen, which stopped when he was in his forties and remains in a state of remission. He told The Guardian in 2014 that he probably had one major epileptic seizure a year during which he would fall down.
Epilepsy is a chronic, non-communicable neurological (brain) disorder that causes sudden and unexpected seizures – like electrical discharges in the brain. Not every epilepsy episode leads to a seizure – some symptoms are disorientation, staring, or a temporary period of confusion, often called a brief blank-out. Other experiences are common too, such as nausea, blurred vision, skin tingling, numbness, and dizzy spells.
With every epileptic seizure, he told The Guardian, his last thought before he blanked out was that he was dying. Epilepsy is not life-threatening, but serious seizures can cause a fall, with muscle contractions that can lead to harm and injury.
Epilepsy influenced the choices in his life – some decisions were forced upon him, such as not being allowed to have a drivng permit – and some decisions he made as a precaution.
Epilepsy most often occurs randomly, and sometimes as a result of triggers. For Hugo, in the early period of his epilepsy episodes, his triggers were stress and multi-tasking. He made the decision to reduce those triggers in his life.
Although epilepsy never affected his work, Hugo said,
‘People always thought I was laid back, but I was basically doped up for thirty years on epilepsy drugs. I ran out of my meds filming in the desert and went cold turkey. I was on a moderately high dose and it was masking a nervous anxiety I didn’t know I had.’
Hugo Weaving manages the stigma of epilepsy, and the erroneous beliefs, through his advocacy for epilepsy awareness, and getting on with his acting work.
‘There’s nothing in my epilepsy that makes me any less able to do anything as an actor. I think, because epilepsy is to do with the brain, people get really worried about it,’
he said in a 2019 Epilepsy Queensland Inc. video on the organization’s 50th anniversary.
Hugo often wears purple, the official colour of epilepsy awareness. Lavender – a purple-flowered plant – contains linalool, a naturally-occurring terpene, a scent with a soothing effect. Relaxing the nervous system with scents helps epilepsy sufferers prevent seizures.