Martin Pistorius was diagnosed with locked-in syndrome/ Image: X

A South African man who spent more than a decade fully conscious but unable to move or speak has reflected on life after emerging from a condition often described as being “locked inside” his own body. Martin Pistorius, who fell ill as a child and was later diagnosed with locked-in syndrome, is now a father, disability advocate and working professional, more than 10 years after regaining a means of communication.

A childhood illness that never went away

Pistorius was 12 when he came home from school in Johannesburg in 1988 complaining of a sore throat and headache. What appeared to be flu-like symptoms worsened rapidly. He gradually lost the ability to speak, walk and control his body, before doctors believed he had entered a vegetative state. “I tested positive for cryptococcal meningitis and tuberculosis of the brain and was treated for both,” Pistorius told LADbible in 2024. “My body weakened and I lost the ability to speak and control my movements. “Everything, from what you wear, to what you eat and drink, even if you eat or drink, to where you will be tomorrow, or next week, and there is nothing you can do about it.”

Martin Pistorius was diagnosed with locked-in syndrome, fully conscious but completely dependent on others for care/ Image: Ladbible

Doctors reportedly told his parents that their son now had the mental capacity of a baby and advised them to take him home to die. The last words he spoke aloud were: “When home?” He did not die. Instead, Pistorius spent years being cared for at home and in day-care centres, with those around him believing he was unaware of the world. By his own account, he regained consciousness around the age of 16, but remained completely unable to communicate, aware, listening and thinking, yet trapped.

‘Like a ghost’: conscious but unheard

“For so many years, I was like a ghost,” Pistorius told NBC News. “I could hear and see everything, but it was like I wasn’t there. I was invisible.” He described the psychological toll of that existence in stark terms. “What really got to me was the complete and utter powerlessness,” he said. “Every single aspect of your life is controlled and determined by someone else. They decide where you are, what you eat, whether you sit or lie down, in what position you lie in, everything.”

He struggled daily with being unable to speak, move, or communicate, while fully aware of his surroundings/ Youtube

Day after day, year after year, his body remained still while his mind wandered. “I would literally live in my imagination,” he said. “Sometimes to such an extent that I became almost oblivious to my surroundings.” At home, his family struggled. During one argument between his parents, his mother turned to him and said, “I hope you die,” believing he could not understand. “It broke my heart,” Pistorius said. “But at the same time, particularly as I worked through all the emotions, I felt only love and compassion for my mother.”

(Right) This 1987 photo is the last one to show the family before Martin fell ill. He is at the right./ Image: Martin Pistorius via NPR

The moment everything changed

A breakthrough came in 2001, when a therapist at his care centre, Virna van der Walt, noticed subtle signs of awareness. “He had a sparkle in his eye, I could see he was understanding me,” she later wrote. She urged Pistorius’ parents to seek cognitive testing. For the first time, he was able to demonstrate that he understood what was being said to him. “She was the catalyst who changed everything,” Pistorius said. “Had it not been for her, I would probably either be dead or forgotten in a care home somewhere.” With assistive technology that converted tiny movements into speech via a computer, Pistorius could finally express himself. One moment, he has said, stands out above all others. “I don’t think I will ever forget that feeling when my mom asked me what I’d like for supper and I said, ‘Spaghetti Bolognese,’ and then she actually made that,” he said. “I know that must seem insignificant, but for me, that was amazing.”

Life after being heard

Recovery was slow and demanding. Pistorius had to relearn reading, social interaction and decision-making. Over time, he regained limited movement in his head and arms, though he still uses a wheelchair and assistive technology to communicate.He went on to study, learn to drive, build a career as a web designer, and compete in wheelchair racing. His story was told in the New York Times bestselling memoir Ghost Boy, and he now regularly shares updates about his life on Instagram. In 2009, he married Joanna Pistorius, whom he met through his sister. The couple welcomed their son, Sebastian Albert Pistorius, in December 2018.

Martin Pistorius is now married to Joanna Pistorius, and they welcomed their son, Sebastian Albert Pistorius, in 2018/ Image: Instagram@martinpistorius

Now an advocate for disability rights, Pistorius regularly speaks about dignity, awareness and the dangers of assuming someone cannot understand. On his 50th birthday, he reflected publicly on what he has survived. “My life has held deep pain, trauma, and challenges that felt utterly insurmountable,” he wrote. “And yet, here I am, having lived through things I was never meant to survive.” He added: “When I reflect on the past 50 years, what remains is not hardship or achievement, but love, gratitude, and appreciation and a quiet, sustaining faith that has carried me through both light and dark.” Despite ongoing challenges, his focus remains forward-looking. “I still face challenges,” he wrote, “but as I step into this next year, my intention is simple: to keep showing up, to shine my light where I am able, and to give back in ways that matter.” His advice, shaped by years of being seen but unheard, is unambiguous: “Treat everyone with kindness, dignity, compassion and respect, irrespective of whether you think they understand or not.”