Martin Pistorius’s story is as impressive as it is heartbreaking. The Ghost Boy was trapped inside his body for over a decade due to an unknown degenerative disease.
Born in South Africa in 1975, Martin Pistorius was an average boy until the age of 12 when he fell sick, and doctors had no clue what was happening. Shortly after, he lost his voice and stopped eating.
He then started sleeping more than usual and avoided human contact. Within 18 months, he was mute and paralyzed. Martin was no longer the average South African boy he once was.
Martin Pistorius at the TED Talk in September 2015 | Photo: Getty Images
MARTIN PISTORIUS’ WORST YEARS
The teen slipped into a deep coma while doctors tried to identify what the problem was. They suspected cryptococcal meningitis and tuberculosis and even treated him for those illnesses, but nothing seemed to help.
Without a diagnosis, doctors just told Martin Pistorius’ mother, Joan, to take him home and wait for him to die. As expected, such a challenging experience deeply affected Martin’s family, who believed the doctor’s word about him being a vegetable.
In the early-90s, when Martin was about 14 or 15 years old, he woke up from the coma and was aware “of everything, just like any normal person.” However, he was unable to respond, let alone move.
During all those months, Joan and her husband, Rodney, took care of him. Rodney would get up early in the morning to drive Martin to daycare, pick him up eight hours later to bathe and feed him, and make sure he turned him to avoid bedsores.
“I HOPE YOU DIE”
Seeing their boy in such a poor condition was heartbreaking. At some point, Joan wanted some sort of relief, so she told Martin, “I hope you die.” Of course, she didn’t know he could listen.
At the daycare center, Martin spent hours doing what he was made to do, which mainly included watching “Barney & Friends” reruns. When he got better, he couldn’t find the right words to express how much he hated that show.
After spending so much time trapped in his own body, Martin’s thoughts turned dark. He believed nobody could ever show him tenderness or even love him. Martin Pistorius said:
“For so many years, I was like a ghost. I could hear and see everything, but it was like I wasn't there. I was invisible.”
Eventually, Martin had enough and chose to dedicate his time to something more productive, like watching things transform over time – plants sprouting and the seasons changing.
He learned to tell time from the changing light and shadows, pretended to race the insects in the room, and had conversations with himself and other people in his head.
[Martin Pistorius and his wife] are raising a son together, Sebastian, born in December 2018.
In 2001, hope came to Pistorius’ life. A new worker at his care center started talking with him and eventually noticed some minor signals that made her think he was more aware than everyone believed.
She then urged Martin’s parents to have him evaluated at the Center for Augmentative and Alternative Communication. There, people could understand him for the first time in over a decade.
MARTIN PISTORIUS NOWADAYS
Martin got special equipment to communicate his needs, and while initially he was limited to basic expressions, he learned to say more over time. From that point on, he thrived.
By the time Martin was 26 years old, he was much better, landed a job, enrolled in college to study computer science, and even wrote a book about his experience, “Ghost Boy.”
In 2008, Martin Pistorius met his wife, Joanna Pistorius, over Skype while she was visiting a friend. They became inseparable “in cyberspace” and fell in love within six weeks.
Three months later, they were already talking about marriage, and in 2009, they tied the knot. Joanna once said that she knew his physical limitations would never limit their love because he was “more alive than anyone I had ever met.”
Nowadays, Joanna and Martin Pistorius are still together, and although doctors warned him he could never have a child, they are raising a son together, Sebastian, born in December 2018. What an inspiring and powerful story.
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