Martin Pistorius

Last updated

Martin Pistorius
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 Nelson Mandela becoming president, the death of Princess Diana, 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.

A vegetative state (VS) or post-coma unresponsiveness (PCU) is a disorder of consciousness in which patients with severe brain damage are in a state of partial arousal rather than true awareness. After four weeks in a vegetative state, the patient is classified as being in a persistent vegetative state (PVS). This diagnosis is classified as a permanent vegetative state some months after a non-traumatic brain injury or one year after a traumatic injury. The term unresponsive wakefulness syndrome may be used alternatively, as "vegetative state" has some negative connotations among the public.

<span class="mw-page-title-main">Nisargadatta Maharaj</span> Indian guru of nondualism (1897–1981)

Nisargadatta Maharaj was an Indian guru of nondualism, belonging to the Inchagiri Sampradaya, a lineage of teachers from the Navnath Sampradaya.

New mysterianism, or commonly just mysterianism, is a philosophical position proposing that the hard problem of consciousness cannot be resolved by humans. The unresolvable problem is how to explain the existence of qualia. In terms of the various schools of philosophy of mind, mysterianism is a form of nonreductive physicalism. Some "mysterians" state their case uncompromisingly ; others take a "pseudo-mysterian" stance, being of the belief that consciousness is not within the grasp of present human understanding, but may be comprehensible to future advances of science and technology.

<span class="mw-page-title-main">Robert Ressler</span> FBI criminal profiler (1937–2013)

Robert Kenneth Ressler was an American FBI agent and author. He played a significant role in the psychological profiling of violent offenders in the 1970s and is often credited with coining the term "serial killer", though the term is a direct translation of the German term Serienmörder coined in 1930 by Berlin investigator Ernst Gennat. After retiring from the FBI, he authored a number of books on serial murders, and often gave lectures on criminology.

<span class="mw-page-title-main">Nicholas Humphrey</span> British neuropsychologist

Nicholas Keynes Humphrey is an English neuropsychologist based in Cambridge, known for his work on evolution of primate intelligence and consciousness. He studied mountain gorillas with Dian Fossey in Rwanda; he was the first to demonstrate the existence of "blindsight" after brain damage in monkeys; he proposed the theory of the "social function of intellect". He is the only scientist to have edited the literary journal Granta.

<span class="mw-page-title-main">Minimally conscious state</span> Disorder of Consciousness where overt signs of awareness are preserved

A minimally conscious state or MCS is a disorder of consciousness distinct from persistent vegetative state and locked-in syndrome. Unlike persistent vegetative state, patients with MCS have partial preservation of conscious awareness. MCS is a relatively new category of disorders of consciousness. The natural history and longer term outcome of MCS have not yet been thoroughly studied. The prevalence of MCS was estimated to be 9 times of PVS cases, or between 112,000 and 280,000 in the US by year 2000.

g-force induced loss of consciousness is a term generally used in aerospace physiology to describe a loss of consciousness occurring from excessive and sustained g-forces draining blood away from the brain causing cerebral hypoxia. The condition is most likely to affect pilots of high performance fighter and aerobatic aircraft or astronauts but is possible on some extreme amusement park rides. G-LOC incidents have caused fatal accidents in high performance aircraft capable of sustaining high g for extended periods. High-g training for pilots of high performance aircraft or spacecraft often includes ground training for G-LOC in special centrifuges, with some profiles exposing pilots to 9 gs for a sustained period.

<span class="mw-page-title-main">Oscar Pistorius</span> South African sprinter and convicted murderer (born 1986)

Oscar Leonard Carl Pistorius is a South African former professional sprinter and convicted murderer. He was first convicted of culpable homicide of his then-girlfriend, which was subsequently upgraded to murder upon appeal. Both of his feet were amputated when he was 11 months old as a result of a congenital defect; he was born missing the outside of both feet and both fibulas. Pistorius ran in both nondisabled sprint events and in sprint events for below-knee amputees. He was the 10th athlete to compete at both the Paralympic Games and Olympic Games.

<span class="mw-page-title-main">Ghost Rider (Danny Ketch)</span> Marvel Comics fictional character

Ghost Rider is a fictional character appearing in American comic books published by Marvel Comics. He is the third Marvel character to don the identity of Ghost Rider, after Johnny Blaze and the Western hero known as the Phantom Rider, who used the name in 1967.

Pam Reynolds Lowery, from Atlanta, Georgia, was an American singer-songwriter. In 1991, at the age of 35, she stated that she had a near-death experience (NDE) during a brain operation performed by Robert F. Spetzler at the Barrow Neurological Institute in Phoenix, Arizona. Reynolds was under close medical monitoring during the entire operation. During part of the operation she had no brain-wave activity and no blood flowing in her brain, which rendered her clinically dead. She claimed to have made several observations during the procedure which medical personnel reported to be accurate.

"Locked In" is the nineteenth episode of the fifth season of House. It aired on Fox on March 30, 2009. Large portions of the episode are shown from the perspective of the patient, who retains consciousness but lacks the ability to move. After discovering the patient in an emergency room while being treated for injuries related to a motorbike crash, House's team move the patient to Princeton Plainsboro and attempts to diagnose him. During the course of treatment, the team discovers several medically relevant secrets about the patient. Other plot points focus on Wilson's attempts to discover why House was in Middletown, New York when he crashed, Wilson's new relationship, and the resolution of Taub's resignation from the previous episode.

Disorders of consciousness are medical conditions that inhibit consciousness. Some define disorders of consciousness as any change from complete self-awareness to inhibited or absent self-awareness and arousal. This category generally includes minimally conscious state and persistent vegetative state, but sometimes also includes the less severe locked-in syndrome and more severe but rare chronic coma. Differential diagnosis of these disorders is an active area of biomedical research. Finally, brain death results in an irreversible disruption of consciousness. While other conditions may cause a moderate deterioration or transient interruption of consciousness, they are not included in this category.

Pretoria Central Prison, renamed Kgosi Mampuru II Management Area by former President Jacob Zuma on 13 April 2013 and sometimes referred to as Kgosi Mampuru II Correctional Services is a large prison in central Pretoria, within the City of Tshwane in South Africa. It is operated by the South African Department of Correctional Services.

"The Blood Line" is the tenth and final episode of Torchwood: Miracle Day, the fourth series of the British science fiction television series Torchwood. It was first broadcast in the United States on Starz on 9 September 2011.

<span class="mw-page-title-main">Mechanics of Oscar Pistorius's running blades</span> Blades used by South African Paralympic runner Oscar Pistorius

The mechanics of the running blades used by South African former Paralympic runner Oscar Pistorius depend on special carbon-fiber-reinforced polymer prosthetics. Pistorius has double below-the-knee amputations and competed in both non-disabled and T44 amputee athletics events. Pistorius's eligibility to run in international non-disabled events is sanctioned by the International Association of Athletics Federations (IAAF).

<span class="mw-page-title-main">Reeva Steenkamp</span> South African model and murder victim

Reeva Rebecca Steenkamp was a South African model and paralegal. She modelled for FHM magazine and was the first face of Avon cosmetics in South Africa. Steenkamp once worked as the live roaming presenter for FashionTV in South Africa and starred in television advertisements for Toyota Land Cruiser, Clover Industries, Redds and Aldor Pin Pop. She was a celebrity contestant on the BBC Lifestyle show Baking Made Easy in 2012 and on Tropika Island of Treasure season 5 which aired on SABC 3 in February 2013.

<span class="mw-page-title-main">Trial of Oscar Pistorius</span> Criminal trial

The trial of Oscar Pistorius for the murder of Reeva Steenkamp and several gun-related charges in the High Court of South Africa in Pretoria opened on 3 March 2014. Pistorius was a leading South African runner who won attention as an athlete with a disability competing at a high level, including at multiple Paralympic Games and the 2012 Summer Olympics. Steenkamp, a model, had been Pistorius's girlfriend for three months. In the early morning of Thursday, 14 February 2013, Steenkamp was shot and killed by Pistorius at his Pretoria home. Pistorius acknowledged that he shot Steenkamp, but he said that he mistook her for an intruder. Pistorius was taken into police custody and was formally charged with murder in a Pretoria court on 15 February 2013. The entire trial was broadcast live via audio, and parts of the trial were also broadcast live via television.

The attention schema theory (AST) of consciousness is a neuroscientific and evolutionary theory of consciousness which was developed by neuroscientist Michael Graziano at Princeton University. It proposes that brains construct subjective awareness as a schematic model of the process of attention. The theory is a materialist theory of consciousness. It shares similarities with the illusionist ideas of philosophers like Daniel Dennett, Patricia Churchland, and Keith Frankish.

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.