Martin Pistorius

Last updated

Martin Pistorius
Martin Pistorius.jpg
Born (1975-12-31) 31 December 1975 (age 48) [1]
Johannesburg, South Africa
CitizenshipSouth Africa (1975–present)
United Kingdom (2016–present)
Alma mater University of Hertfordshire (BSc (Hons), computer science)
Occupation(s)Freelance web developer/designer, writer
Known forGhost Boy
Spouse
Joanna
​
(m. 2009)​
Children1
Website www.martinpistorius.com

Martin Pistorius (born 31 December 1975) is a South African man who had locked-in syndrome and was unable to move or communicate for 12 years.

Contents

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 paralysed 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 [2] 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. [3] [4] 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, it was announced that the couple were expecting a child, and Pistorius was wheelchair racing. [5]

Pistorius now works as a freelance web designer and developer. [6] [7] [8]

Early life

During the late 1980s, Pistorius and his parents were living in South Africa, when at the age of 12 he slowly began developing symptoms that included losing the ability to move by himself. [4] [9] Doctors were unable to diagnose the exact ailment and believed it was cryptococcal meningitis and tuberculosis of the brain. [4] [10]

Pistorius eventually fell into a vegetative state that lasted four years, [11] during which time doctors informed his parents that they did not expect Pistorius to re-awaken or survive for much longer.[ citation needed ]

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. [4] While unconscious, Pistorius was able to hear and understand conversations his relatives were having by his bedside, although they did not know this. After recovery, he spoke about major world events – such as the death of Princess Diana, Nelson Mandela becoming president, and the September 11 attacks – that happened when he was unable to communicate. [11]

He hated the children's television program Barney & Friends – re-runs of which were shown in units where he was recovering – and subsequently tried to think about things that gave him some control over his external reality, such as telling the time by tracking sunlight in a room. [11]

Pistorius believes that he began regaining consciousness around age 16 (around 1992),[ citation needed ] 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". [10] Around age 19, Pistorius regained full consciousness and awareness, but was initially unable to impart this to the people around him.[ citation needed ] 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' day carers—began noticing that Pistorius would react to specific statements and questions she made.[ citation needed ] 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.[ citation needed ] Pistorius' parents gave him a computer with software to communicate with the people around him.[ citation needed ]

Personal life

Pistorius met his wife Joanna, a UK resident, in 2008 through his sister Kim, who had moved to England for her job.[ citation needed ] He later moved there, and they were married in 2009. [10] He described the terrifying experience of being aware but paralysed in a short video recording in 2018, when the couple was about to have a child. By that time, while still using a wheelchair, he was racing in it. [5] Their son, Sebastian Albert Pistorius, was born a few months later on 6 December. [12]

Published work

In 2011, Simon & Schuster published Pistorius' autobiography, Ghost Boy, which he co-wrote with Megan Lloyd Davies. [13] [14] [15] The book met with a favourable response. [16] [17] [18] 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. [8]

Media appearances

External media
Audio
Nuvola apps arts.svg Locked-In Man, Invisibilia, 22:55 [19]
Video
Nuvola apps kaboodle.svg Martin Pistorius, My Way Back to Words, TED Talks, 14:31 [20]

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". [21]

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". [20] He has given other talks. [22] In 2018, he made a video describing his illness and recovery, and the experience of being fully conscious but unable to communicate. [5]

Related Research Articles

<span class="mw-page-title-main">Locked-in syndrome</span> Condition in which a patient is aware but completely paralysed

Locked-in syndrome (LIS), also known as pseudocoma, is a condition in which a patient is aware but cannot move or communicate verbally due to complete paralysis of nearly all voluntary muscles in the body except for vertical eye movements and blinking. The individual is conscious and sufficiently intact cognitively to be able to communicate with eye movements. Electroencephalography results are normal in locked-in syndrome. Total locked-in syndrome, or completely locked-in state (CLIS), is a version of locked-in syndrome wherein the eyes are paralyzed as well. Fred Plum and Jerome B. Posner coined the term for this disorder in 1966.

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References

  1. ↑ Martin Pistorius [@martinpistorius] (31 December 2015). "40 years on the planet, what an amazing journey so far - Feeling incredibly blessed, grateful, spoilt and loved today!" (Tweet) – via Twitter.
  2. ↑ "Centre for Augmentative & Alternative Communication". University of Pretoria. Retrieved 22 July 2018.
  3. ↑ "February 19, 2010". CBC.ca. Retrieved 12 January 2015.
  4. 1 2 3 4 Miller, Lulu. "Trapped In His Body For 12 Years, A Man Breaks Free". NPR. Retrieved 12 January 2015.
  5. 1 2 3 "From locked-in syndrome to being a dad". BBC News. 22 July 2018.
  6. ↑ Deveney, Catherine (17 July 2011). "The Catherine Deveney Interview : Martin Pistorius : Ghost writer". Scotland on Sunday. Archived from the original on 29 March 2015. Retrieved 12 January 2015.
  7. ↑ "Martin Pistorius and Rebecca Grant". BBC London 94.9. Retrieved 12 January 2015.
  8. 1 2 Hager, Emily B (25 July 2012). "For Children Who Cannot Speak, a True Voice via Technology". New York Times. Retrieved 12 January 2015.
  9. ↑ Flintoff, John-Paul. "Inside, Mr Invisible screamed but no one could hear". The Sunday Times. Archived from the original on 12 January 2015. Retrieved 12 January 2015.
  10. 1 2 3 "Interview: Martin Pistorius, author". Scotsman. Retrieved 12 January 2015.
  11. 1 2 3 Holley, Peter (13 January 2015). "Meet the man who spent 12 years trapped inside his body watching 'Barney' reruns". The Washington Post.
  12. ↑ Martin Pistorius [@martinpistorius] (6 December 2020). "Happy 2nd birthday to Sebastian" (Tweet) – via Twitter.
  13. ↑ "Ghost Boy - My Escape from a Life Locked Inside My Body by Martin Pistorius and Megan Lloyd Davies". Daily News. 3 October 2012. Archived from the original on 29 March 2015. Retrieved 12 January 2015.
  14. ↑ Ball, Jonathan (16 September 2011). "Martin Pistorius. (review)". Cape Times. Archived from the original on 29 March 2015. Retrieved 12 January 2015.
  15. ↑ Veal, Ben. "Book Review: 'Ghost Boy' by Martin Pistorius". Guru Magazine. Archived from the original on 13 January 2015. Retrieved 12 January 2015.
  16. ↑ Lawson, Dominic (17 July 2011). "Ghost Boy by Martin Pistorius (review)". The Sunday Times. Archived from the original on 13 January 2015. Retrieved 12 January 2015.
  17. ↑ Smith, Cyris. "Ghost boy – my escape from a life locked inside my body". IOL.co.za. Retrieved 12 January 2015.
  18. ↑ Burstall, Diana. "Ghost Boy – Martin Pistorius (review)". Echo News. Archived from the original on 13 January 2015. Retrieved 12 January 2015.
  19. ↑ "Locked-In Man". Invisibilia. 8 January 2015. Retrieved 18 May 2017.
  20. 1 2 "Martin Pistorius: How my mind came back to life – and no one knew". TED Talks. October 2015. Retrieved 18 May 2017.
  21. ↑ "Invisibilia: The Secret History Of Thoughts". NPR. Invisibilia. National Public Radio. 9 January 2015. Retrieved 14 January 2015.
  22. ↑ "Parliamentary reception for 'Ghost Boy' Martin Pistorius". British Healthcare Trades Association (BHTA). 8 January 2013. Archived from the original on 2 February 2015.
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