Have you ever wondered what it would be like to fall into a coma, or what it would be like to wake up from one? This was the reality for Martin Pistorius, who grew up relatively healthy but would soon find himself in a troubling reality. At just 12 years old, he started to feel ill, and nothing could have prepared him for what happened next.
Day by day, he was met with new medical problems that would take away his ability to connect with people, and eventually he ended up in a coma. If this is not heartbreaking, we aren’t sure what is. Fortunately, though, he would wake up after 13 years. His miraculous recovery came with chilling tales that will send you on an emotional roller coaster.
Just a Boy Living His Life
Martin Pistorius was born in South Africa in 1975. Those who knew him recalled him as being a normal boy going through life with a happy and healthy family life. He grew up like any other boy in his neighborhood. His life was no different than his peers, until, with almost no notice, his life took a sharp turn for the worse.
When Pistorius was 12 years old, he started to feel sick. It did not strike the family as anything too serious; there did not seem to be much cause for concern. Everything would quickly change, and their lives would be flipped upside down entirely. What happened next made headlines across the world.
Everything went from one extreme to the next, very quickly. One day he was living his normal life, and the next he lost his motor skills. Something about that was obviously concerning. It all started with a sore throat at the age of 12. He quickly lost his voice, but that’s certainly not where it ends.
Everything for Pistorius was getting worse and worse; he became incredibly tired and slept constantly. It didn’t take long for him to start avoiding contact with his family and friends. As we know, things got even worse. The problems had only just begun; there was more to come.
Out of Options, Out of Luck
Both his parents and doctors were mystified and scared. At one point, he was a normal boy enjoying his life. Now, he lay barely conscious and silent. There had to be answers, but they didn’t know where to begin. His health declined before their eyes and they could not figure out what was happening.
Within 18 months of that initial sore throat, he was completely mute, wheelchair-bound, and hospitalized. They had teams of doctors researching and trying to get to the root of the problem, but they could not find a thing. What is happening, and why would it happen to an innocent young boy?
Getting Ready to Say Goodbye
Things got worse and Pistorius spent more and more time in the hospital. Doctors worked day and night to figure out what was happening, and they tested him for every possible ailment. They even started treating him for any disease possible. They tried to treat him for tuberculosis of the brain, cryptococcal meningitis, but it seemed they were not getting the job done.
Doctors were stumped and came to a sad conclusion. They knew they could not help him and told his parents that the brain damage caused by the mysterious sickness would leave his brain as developed as a baby’s. His parents were told that they should take him home and prepare their final goodbyes, as that seemed to be the direction they were heading in.
An Unexpected Turn
As Martin Pistorius and his family departed the hospital that day, the team working to help him thought he would pass away soon. Everyone was shocked when day by day, he was still alive. He clung to life despite not being able to speak or move. His will to live astonished everyone around him.
His parents put plans into motion to keep things as normal as possible. They dressed him, fed him, and bathed him much like they had when he was a baby and did everything possible to help their son. They even set alarms to wake up every two hours, in order to make sure he was being turned over in his bed so as to not get bed sores. They kept this routine up for 12 years.
He Was Trapped
His parents must have been to hell and back over these long years of care, but what else could they do? They loved their son and prayed for his survival. They spent all their time looking after him, but they couldn’t communicate with him. They never thought they would hear his voice or speak with their son again.
Martin Pistorius spent several years in a vegetative state. Fortunately, though, he did gradually become aware of his surroundings. However, he learned that no one else could tell that he was awake. He was terrified. “Everyone was so used to me not being there that they didn’t notice when I began to be present again,” he told NPR.
Alive, but Not Quite
He experienced things that no one can even come close to imagine happening. He was tapped inside his own body, fully conscious, and had no way to communicate with those around him.
It seemed like he was living in a world you would only see in the movies. Pistorius had now woken up from his coma, but he felt like he was only awake inside his imagination. “For so many years, I was like a ghost,” he told NBC News. “I could hear and see everything, but it was like I wasn’t there. I was invisible.”
Searching for Help
Now that his mind was awake and back to his normal functioning, the rest of his body remained in a coma. He knew what was happening around him and wanted to figure out how he could communicate with those around him. There had to be something he could do.
He was confident that someone would notice that he was awake and alert for the first time in ages. Unfortunately, much like the situation as a whole, those around him were so used to him being out of communication that everyone was checked out and not looking for signs of him coming back to life.
Helpless and Afraid
There is no way for us to truly understand the stress of what he was dealing with while he was in this new state between comatose and alive. He was overtaken by feelings of powerlessness, and he was terrified of what would happen if he were not able to communicate with them.
“It was terrifying at times,” he told NBC News. “What really got to me was the complete and utter powerlessness. Every single aspect of your life is controlled and determined by someone else. They decided where you are, what you eat, whether you sit or lie down, in what position you lie in, everything.”
Something Bigger Than Him
Living in his own body like a ghost must have been a truly one-of-a-kind experience. He was constantly scouring his mind for new ways to communicate with those taking care of him. He needed them to know that he was still there, he was coming back, and he needed their help.
He felt like he was moving his body again. However, he was not moving his body at all. He was doing whatever he could to get their attention, though it never amounted to anything. At least he was making the effort to change his reality.
As you can imagine, being trapped in a world alone, regardless of the situation, seems to be an incredibly lonely existence. It took a toll on him emotionally and despite having people care for him around the clock, not being able to communicate was killing him.
“At first, when I was trapped inside my body, my biggest fear was being alone,” he said. “Which I guess is kind of ironic. Because, in a sense, even though there were people around me, I was alone. I think it was more a case that I felt that, as long as my parents were around, there would be someone to look out for me. But if there weren’t, then what?”
He Watched Too Much Barney
The feeling of being fed up and frustrated with his situation was unreal. To make matters worse, he spent hours, days, months, and ultimately years with the television on. He had no say in the matter, naturally, since everyone thought he was still in a coma. No one could tell that he was bored by what he saw on TV every moment of every day.
Pistorius revealed that he spent years watching Barney & Friends, a show about a big purple dinosaur. He had to watch it so much that he is now completely sick of it. “I can’t listen to or watch Barney now,” he revealed, even as an adult.
His Parents Struggled
Though he was going through something incomparable himself, he was able to see and understand how his parents were dealing with everything. It was heartbreaking to watch the people who gave him life not only change their entire lives for him, but to see the emotional turmoil it put them in.
They came to see him every day, and all he wanted was to tell them he appreciated their efforts. “I felt only love and compassion for my mother,” he revealed. “My mother often felt that she wasn’t a good mom and couldn’t take care of me. One of the hardest things for me was I couldn’t tell her that, ‘No, you are doing great.’”
How Did He Keep Busy?
Again, we can’t say it enough – imagining ourselves in his position is just impossible. He was completely awake but trapped within his own body, but luckily many of his senses were coming back. He was not stuck solely with his thoughts anymore, and he was learning how to entertain himself in the meantime.
He was able to exercise his brain by doing things that were rather mundane and slow, but he just needed something to focus on. He would watch a wet floor dry, plants grow, and so on. It was becoming more and more difficult for him to remain in touch with reality.
Was This His New Life?
He was now fully awake and aware of what was around him. Unfortunately, he still could not engage with anyone or anything. The more he tried to keep himself occupied, the more he had to channel into his mind and use it as an escape. Living in your own mind is exhausting to begin with, let alone living in your own mind in his situation.
In an interview, he revealed what he was feeling. “I used to live inside my mind. Sometimes to such an extent, that I became almost oblivious to my surroundings. I’ve had conversations with myself and other people all in my head. I’d imagine I was doing all sorts of things.”
So Close, He Could Feel It
He tried to alert those caring for him however he could. Alerting them was getting harder and harder, but he could not quite accomplish the goal he was looking to achieve. His body was growing, but he was still a child, dealing with trauma without his parents to confide in.
Even though he had a feeling that it would all be over soon, he still struggled. He missed his parents terribly. “I was a child, at the end of the day,” he said. “And what child doesn’t want their mommy and daddy?”
Better Days Ahead
His will to keep going must have faded to an extent. He was dealing with the same concerns day in and day out. Somehow, even through years of feeling stuck, he managed to keep pushing and praying, knowing that soon there might be some type of help.
This went on for years and years. After a long 13 years, a new employee at his care center made all the difference. He was worried that he would have to remain in his silent, lonely life until he passed away without ever speaking to another person again. In 2001, his guardian angel appeared. This new worker at the care center was instantly able to identify signs that others couldn’t through the years.
Confidence in Tomorrow
The new care worker was noticing the small details that no one else saw. It always takes a fresh pair of eyes to see what everyone else has glazed over. Everyone else seemed too used to his current state to notice his little changes, so fortunately she was able to come in and make his life easier for the first time in years.
We don’t know exactly what really caused her to notice the little details. Nurse Verna just had a feeling that he was still in there, even if it wasn’t obvious. She sent him to the Center for Augmentative and Alternative Communication for a full evaluation that would help them crack the case of what was going on in Pistorius’s mind.
After transferring to the Center for Augmentative and Alternative Communication, he was immediately tested for signs that he was aware and able understand them. Sure enough, her suspicions were confirmed; he was fully awake! Had she not paid attention to detail as she did, he would have remained in the same state for who knows how long.
Once they realized he was fully awake, they helped him get set up with technology that would change everything. His new equipment would help him communicate and finally voice his thoughts. After years of no speech, he started slowly, with comments like “I am uncomfortable,” and “I would like something to drink.”
His First Request
He finally was able to tell them what he wanted to do, say, eat, and so on. He shared the moment that helped him grasp that things were coming back to normal. He was finally able to vocalize what he wanted, and he felt invigorated. He was so happy to be coming back to some form of normalcy.
“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 told NBC News. “I know that must seem insignificant, but for me, that was amazing.” It’s truly the little things that make us the happiest!Martin Pistorius
Naturally, missing 13 years of societal advancement will make things a little more difficult. Add a coma to the process and of course everything gets just a bit trickier. It took him some time to be able to grasp the new technology that would help him get back to normal activities.
He was finally able to socialize with others and make decisions for himself! This was groundbreaking. After 13 years, he needed to relearn everything from scratch. Though it may have been difficult for him, he prevailed. He learned to push himself in his wheelchair, and also got to drive a specially designed car for his needs.
Moving Up in Society
Years of sitting still will certainly inspire anyone to hit the ground running in getting their life started again. He started to think about what he could do to further his education.
The new technology inspired him to begin his career as a successful web designer. Having a dream job does not necessarily mean everything is going to be better, but it made a huge difference in his mind. He felt he owed it to himself.
Looking for Love
Now that he was no longer trapped in his own body, he was able to start setting goals for his new life. There was something he wanted more than anything at this point; he wanted to find true love. Love is something we all aspire to find, but it probably meant so much more to this man who had spent most of his life out of communication with everyone around him.
He thought of the love he had to give to others. He told NBC that he had so much to give, yet no one to give it to. It was a thought that Pistorius had dealt with in his extreme loneliness for years and years. Little did he know, love was coming — and soon.
Finding Love That Lasted
After starting his whole life over, he was excited to have someone to share the journey of life with. On New Year’s Day in 2008, he met one of his sister’s friends, Joanna. They hit it off instantly. He could instantly sense that they had a spark that was unmatched.
She told ABC News that, “he had such a nice smile and I just thought he’s really attractive. He seemed like such a kind person.” No surprise that he came back saying the same about her; “I just enjoyed being with her. She made me laugh!”
They Tied the Knot
After everything he experienced, he was delighted to have something go right for him. After coming back from the dead and overcoming an incomparably painful 13 years, he was getting the happy ending we all know he more than deserved. The two decided to get married and build their life together.
In 2009, he and Rebecca were married in the United Kingdom. The two still live there today and remain living in harmony. He found his soulmate and they were ready to start their lives together. Soon, the two would welcome their first little bundle of joy; in 2011, their son Sebastian was born. “The sound of Sebastian’s laughter makes my heart beam with joy,” Pistorius said on Twitter.
Of course, his story is one for the ages! The same year his son Sebastian was born, he released his autobiography, Ghost Boy, published by Simon & Shuster. The book was an instant success, and he headed into a world of semi-stardom.
He went on to conduct interviews, and he even delivered a TED Talk! In the few years after he came back to life, he was able to share his chilling story. He was an inspiration to anyone who needed someone to give them hope for the future. “Life can change so quickly,” he said. “It is good to appreciate what you have in this moment. Treat everyone with kindness, dignity, compassion and respect—irrespective of whether you think they understand or not. Never underestimate the power of the mind, the importance of love and faith, and never stop dreaming.”
His story was an inspiration and touched the lives of millions across the globe. Ghost Boy received amazing reviews by critics, and he was already gaining some celebrity credit. He had a huge fanbase and had no clue just how famous he would become. After years of being stuck without access to the outside world, it was time to speak to the public about what he had felt.
Pistorius was featured in the first episode of the NPR Podcast, Invisibilia, in their episode entitled “The Secret History of Thoughts.” This would launch his life as a motivational speaker, and he would later give his own TED talk in Kansas City, entitled “How My Mind Came Back to Life – and No One Knew.”
He Continues to Thrive
He has done way more than just TED talks and motivational speaking. He transformed from a child trapped in an unfortunate and uncomfortable reality, to a thriving adult, successful in his career, happily married, and a father prouder than words can express. In 2018, he shared a video that captured the hearts of people across the world, revealing the struggle he had dealt with for years.
Although he could no longer walk, he could move with the help of a wheelchair. He decided to try his hand at wheelchair racing, and he was great at it!
Proud to Be a Dad
After overcoming the prison of being locked into his own body, he grew stronger by the day, especially with the support of those he loved. Though he had a great career in technology and was an established author and motivational speaker, he loved being a father the most.
In his Twitter bio, he describes himself as that exactly: “Computer Scientist, Web developer, Author of Ghost Boy, Photographer, wheelchair racer, friend, and best of all husband and father.” He was honored by a British Parliamentary reception where he delivered a chilling speech, stating: “I found myself essentially locked inside my body. Perhaps one could even say being able to see, hear and understand everything and having no effective means to communicate is a cruel form of torture.”
Looking Forward to Growing
He said something that cannot be paraphrased without ruining the integrity of it. “Thankfully, my life began to change in 2002, when someone who had happened to have heard about augmentative and alternative communication met me and suggested I be assessed to see if I could communicate,” he revealed. “Thankfully my parents were willing to try it and were quite persistent about me being given an opportunity to communicate. In March 2003, I truly began my journey back into society. I stopped going to the care home for the profoundly mentally and physically disabled and began my working career.”
His speech grabbed everyone and showed us that reality can change on a moment’s notice. He expressed his gratitude for the opportunity to move on and live his life to the fullest, now that he had the opportunity to do so – something that had been unfairly taken from him for years in this game we call life.
Living in the Now
Life moved forward for him and now; there was no looking back. He has sent chills up and down our spines as we heard his story. For him, the main takeaway was that communication is an important tool – without it, we are missing out on a fundamental part of life.
“None of this would have been possible without the ability to communicate,” he said. “Communication transformed me from an object to be cared for, to a human being with hopes, wants, needs and aspirations.” If that doesn’t say it all, maybe this will: “If all my possessions were taken from me, with one exception, I would choose to keep the power of communication, for by it, I would soon regain all the rest.”