A Sobering Story
Martin Pistorius – born perfectly normal; completely debilitated by age 12; paralyzed; unable to utter one syllable or move even his little finger; abused physically, psychologically, and sexually while 100% conscious. His story is both inspirational and depressing. It will also teach you that oftentimes appearances can be quite deceiving.
Martin was born just as any other child and raised with no health issues. His life in South Africa during the early ’80s was about as happy as any child’s could be. Some of his favorites activities included watching cartoons and tinkering around with anything electronic – including resistors, transistors, and ham radio. That all took a turn for the absolute worst on one very bleak day.
From Sore Throat to Immobility
It all began just as any simple illness begins. Martin complained one morning of a sore throat and his mother gave a call to the doctor. The doctor assumed he’d be feeling better within a day or two, but the opposite happened. His illness worsened by the day. With each visit from the doctor came increasing doubts that Martin would ever function normally again. Finally the doctor was able to diagnose him.
A Disease of the Brain
Martin was diagnosed with cryptococcal meningitis, a very rare tuberculosis of the brain. The disease’s characteristics included motor function deprivation, and it was rapidly increasing by the day. Shutting down the nervous system was only the beginning. Eventually he lost the ability to speak. Then he couldn’t even manage to make eye contact.
Despite pleading with the doctor for any sort of hope for full recovery, Martin’s parents – Joan and Rodney – had to bear the truth: their son would never again run around the backyard, never again tell them how much he loved them, never again look into their eyes. He would remain a vegetable until the day he died, which the doctor told them would likely happen quite soon. Except that his death never happened….
The boy’s parents had to come to grips with the stark fact that Martin, though still alive and with them, was little more than a hollow shell of their son. But he was still their son. They’d have to simply keep him as comfortable as possible and pray that one day he’d return to them. Rodney was the most devoted to that decision. He’d wake up every two hours during the night to turn him to prevent the development of bedsores.
As the years progressed and their energy waned, Martin’s parents arranged for a local care center to care for him during the day. Rodney would awaken at 5:00 am every morning, dress him, load him in the car, and drive him down there. Eight hours later, he would take him home, feed him, give him a bath, and put him to bed.
While Martin’s father was able to handle the process, it was his mother who found it most difficult to cope with it all. Between the burden of having to care for him and the emotional stress of having to see her son grow up like this, she suffered greatly daily. One day, the mounting pressure caused her to scream at him, “I hope you die!” She had been told that Martin couldn’t hear anything in this condition, but that wasn’t entirely true.
Four years had passed since Martin turned into a vegetable, but at age 16 he found himself more conscious of those around him, more keen of his surroundings. As his mind began reforming itself, he found he could better hear conversation around him; but he still couldn’t talk or move at all. He had heard the hateful words that came from his own mother’s mouth, but he was unable to tell her that.
Martin had regained full consciousness and contained the same awareness that any normal person would have. But he still lacked ability of expression, mobility, and speech. Martin suddenly awoke fully and came to a most shocking realization: he was now a man with the mind of a boy. Being fully aware became worse for him than when he was a vegetable, because now he could consider everything.
Prison of the Mind
His family had simply gotten used to completely ignoring him at home. They would carry on day in and day out without ever so much as glancing his way. Even if he could have made an effort to signal them, they never would have even noticed. Every day was more depressing than the last as he came to the realization that this was now his life, merely existing without living. He was, in fact, a prisoner of his own mind.
Solution to the Pain
Trapped with no physical means or hope of escape, Martin came up with the only solution he could conceive: ignore it. All of it. He would make his mind a complete blank, detach himself from reality, and simply embrace his solitude. But he found there were some things he simply couldn’t ignore.
No one knew about Martin’s regained consciousness and assumed that he was still a vegetable, so they plopped him in front of the TV for endless hours. Even the staff at the care center did the same thing. His entire day consisted of sitting in front of the television watching reruns of Barney & Friends. If Martin considered this a form of cruelty, it was nothing compared to what was to come….
Martin grew to fear his daily trips to the care center. By outward appearances it was perfectly normal, but from inside it was sheer torture for Martin. Some of the staff would yank his hair making him tear up, slam the metal spoon into his teeth while feeding him, yell at him for minutes at a time, feed him scalding tea when he was sick, and physically abuse him with the knowledge that he was helpless. But even that wasn’t the extent of his abuse.
One female staff member in particular didn’t slap Martin around or physically harm him, but she did scar him psychologically. On some nights she would enter his room and straddle him to simulate sex or make inappropriate physical contact with him with the full knowledge that he was powerless to object or inform his family of what was happening. There were many nights spent lying awake wondering if his torment would ever end
The Worst Thought of All
Martin was at an all-time low. His daily experience with the care center was demoralizing, to say the least, but even that wasn’t the nagging thought constantly in his mind. Each day he replayed his mother’s words “I hope you die!” in his mind. They festered like an exposed wound unable to heal. Rather than let it affect him negatively, though, Martin decided to try to understand his mother’s feelings.
Instead of allowing his thoughts to boil in his mind, Martin made a decision to strengthen his mind in an effort to combat the depression and solitude. The less he focused on the bitterness and more on hopes of regaining full function, the stronger his mind felt. The neurons re-engaged and reframed themselves, and Martin soon found himself able to move again.
One Twitch At a Time
As Martin combated the onslaught of dismal feelings, he suddenly one day found himself able to move for the first time in almost 13 years! His parents never even noticed at first, but one day Martin managed to twitch one of his fingers. Baffled beyond reason, his parents got in touch with an aromatherapist and asked her to have a look at their son. What she discovered was that Martin would actually respond to certain questions or phrases.
Getting His Life Back
Martin was 25 when his life began to at least somewhat resemble normalcy. He regained full consciousness and a part of his mobility, though he was still restricted to a wheelchair
Within a year of his recovery he met Joanne through the internet and the two began dating. In 2009 Joanne agreed to marry Martin, and they now reside in Harlow.
Martin hasn’t regained full mobility, and he requires a voice synthesizer to speak audibly. Life since his reawakening has been difficult, as he’s had to relearn all of the basics including the alphabet and mathematics.
Learning To Drive
His next step in attaining a sense of normalcy included learning to drive in an adapted car. With an instructor by his side, Martin passed the theory test flawlessly!
As Martin reflected on his years of torment, he wished he could properly convey to others the thoughts that had been racing through his mind during his 13 years of inability. The best way, he concluded, was through a book. With a new purpose in mind, he set about writing with special speech-to-text technology.
Once he finished writing it, Martin’s autobiography “Ghost Boy” was published in 2011. The book received critically positive reviews and sold enough copies to become an international best seller!
Martin was invited to speak at the Kansas City Tedx Talk in 2015 where he gave a speech describing life without living. “Imagine being unable to say, ‘I am hungry,’ ‘I am in pain,’ ‘thank you,’ or ‘I love you,’ — losing your ability to communicate, being trapped inside your body, surrounded by people yet utterly alone,” he said using his computer software. When his 14-minute-long speech concluded, he received a standing ovation.