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noname223

Archangel
Aug 18, 2020
6,146

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.

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]

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.[4]

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 in the early 1990s, 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][11] Around age 19, Pistorius regained full consciousness and awareness, but was initially unable to impart this to the people around him.[11] 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.[12] 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. He has learned to use augmentative and alternative communication (AAC) to communicate with others


Personal opinion: I am pretty surprised that someone who experiences something like that procreates. Maybe I have a distorted notion of such a state but isn't this a very cruel form of torture?
 
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Forever Sleep

Earned it we have...
May 4, 2022
12,791
That was my thought too. Why on earth would they want children? What if their children were affected by that? Again though- why are we really surprised? I think people choose to have children to make their own lives richer/ more interesting/ more full of love. Maybe they had assurances their offspring wouldn't be affected.

It sounds like a toturous life to me. But then, it's incredible that some people just seem to accept their lot. I suppose on the upside, they had little to no expectations placed on them. It's must be a pretty distorted view of life though, being trapped like that.

I wonder if their children are happy. They could well be of course. Just because someone is disabled, doesn't mean they can't love. I imagine the family is very tight knit already to be supporting him.

It also sort of amazes me when people in such difficult and isolated situations find partners. But then, I guess with the internet, the world is far more open. I sometimes think they must be incredible people though. I suppose it is cruel to say but, imagine the adjustment a partner would have to make to live their life like that. A huge proportion of time would likely have to be spent as the person's carer or, they would have to get used to having carers around them both a lot of the time. It's a massive commitment. I imagine, almost like having another child to look after. I imagine they must both be incredible people to make it work.
 
Pluto

Pluto

Cat Extremist
Dec 27, 2020
5,574
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