Quick Facts
Biography
Martin Pistorius (born 1975) is a freelance web designer, developer, and author, best known for his 2011 book Ghost Boy, in which he describes living with locked-in syndrome and being unable to move for 12 to 14 years. When he was 12, he began losing voluntary motor control and eventually fell into a vegetative state for three years. He began regaining consciousness around age 16 and achieved full consciousness by age 19, although he was still completely paralyzed with the exception of his eyes. He was unable to communicate with other people until his caregiver Virna van der Walt noticed that he could use his eyes to respond to her words. She sent him to the Centre for Augmentative and Alternative Communication at the University of Pretoria for testing, where they confirmed that he was conscious and aware of his surroundings.
His parents then gave him a speech computer, and he began slowly regaining some upper body functions. In 2008 he met his wife Joanna through his sister Kim, and in 2009 they married. He co-wrote his autobiography Ghost Boy with Megan Lloyd Davies, which was published in 2011. By that time Pistorius had regained limited control over his head and arms, but still needed his speech computer to communicate with others. In 2018 the couple were expecting a child, and Pistorius was wheelchair-racing.
History
Life
During the late 1980s, Pistorius and his parents were living in South Africa, where at the age of 12 he slowly began developing symptoms that included losing the ability to move by himself. Doctors were unable to diagnose the exact ailment and believed it was cryptococcal meningitis and tuberculosis of the brain.
Pistorius eventually fell into a vegetative state that lasted 4 years, during which time doctors informed his parents that they did not expect Pistorius to re-awaken or survive for much longer. Starting at age 14, Pistorius received part of his daily care via a care home during the day. At night, he was primarily cared for by his father Rodney, who stated that he woke up every two hours to turn his son so that he would not develop bed sores. Pistorius believes that he began regaining consciousness around age 16 (around 1992), during which time he was able to sense the people around him but did not immediately recall previous events, something he has described as "a bit like a baby being born". Around age 19, Pistorius regained full consciousness and awareness, but was initially unable to impart this to the people around him. He was capable of making small movements that were not initially detected by his primary caregivers. One day, Virna van der Walt—an aromatherapist and one of Pistorius's day carers—began noticing that Pistorius would react to specific statements and questions she made. Upon her recommendations, Pistorius was sent to the Centre For Augmentative And Alternative Communication at the University of Pretoria around age 25. There, they confirmed that he was aware and could respond to statements. Pistorius's parents gave him a computer with software to communicate with the people around him.
Family life
Pistorius met his wife Joanna (a UK resident) in 2008 through his sister Kim, who had moved to the United Kingdom for her job. He later moved to the United Kingdom to be with Joanna and they were married in 2009. He described the terrifying experience of being aware but paralysed in a short video recording in 2018, when the couple were about to have a child. By that time, while still using a wheelchair, he was racing in it.
Ghost Boy
In 2011 Simon & Schuster published Pistorius's autobiography, Ghost Boy, which he co-wrote with Megan Lloyd Davies. The book met with a favourable response. By 2011 Pistorius had regained some control over his head and arms and could communicate with others via a computer equipped with text-to-speech software.
Invisibilia
Pistorius's story found a considerably larger audience after being featured on the first episode of NPR's podcast Invisibilia, titled "The Secret History of Thoughts".
Talks
In 2015, at the TEDx event in Kansas City, Pistorius described how he freed himself from a life locked inside his own body in his talk How my mind came back to life — and no one knew. He has given other talks. In 2018 he made a video describing his illness and recovery, and the experience ofbeing fully conscious but unable to communicate.