Imagine living your best life as a 12-year-old boy – hanging out with friends, discovering new things, and preparing for your teenage years.
Then one day, you just get sick. You can’t move. You can’t speak. You enter a coma and never recover – for twelve whole years.
That’s what happened to Martin Pistorius. Doctors believed it was a neurodegenerative disease and told his parents that he was unaware of the world around him. But that couldn’t be more wrong…
Normal kid with a bright future
Martin was a normal and healthy 12-year-old boy living in South Africa with his parents and two siblings.
He never had any sort of health issues that weren’t common to kids his age. Martin was a bright young kid who had a deep interest in electronics, and he was brilliant at it!
So much so that even at such a young age, his parents could already see him becoming a hardware engineer.
How it all started
Everything was going well in their household and they were simply living from day to day.
Until a sudden misfortune struck him and his family. It was something that no one could have ever expected.
And Martin had no idea how much it would change his life forever…
A simple sore throat
It all happened really quickly when one day Martin came home sick from school. He didn’t think it was that big of a deal.
After all, it was just a sore throat and nothing more. And neither did his parents.
But as it turned out, disregarding that sore throat was a huge mistake that would cost him his teenage years…
Slipping into a coma
Shortly after, his health quickly deteriorated and his entire body weakened. He started having difficulties moving his limbs as he lost control of his muscles.
Then he couldn’t talk anymore and stopped communicating altogether.
Eventually, Martin slipped into a coma and entered a vegetative state that would go on to last 12 years. His parents thought they had lost him forever…
Doctors couldn’t figure it out
The worst part for Martin’s parents was that the doctors couldn’t put their finger on what it was all about.
First, they gave him a cure for tuberculosis, but it didn’t work. Then, they suspected cryptococcal meningitis – an infection that spread from the lungs to the brain.
Unfortunately, his treatments produced no results. And Martin’s parents were losing hope…
It just got worse
Within just the span of a year, Martin got even worse.
He ended up losing all his ability to move, eat, drink, or speak. That was when it had finally sunk into his family – he had become completely immobile.
Still, nobody could tell what the reason behind this was. The chances of him getting better seemed grimmer and grimmer every day…
He was trapped
Martin became a prisoner inside his own body…
And although his parents thought he was an empty shell of the boy he used to be, they failed to notice one tiny detail about him.
Unfortunately, no brain tests were conducted on Martin which would have revealed the truth. Would there be any chance of him getting back to consciousness?
All hope was lost
Years went by and his doctors still couldn’t know what the disease behind Martin’s fast and sudden decline was.
They had never seen anything as progressive before.
But given how quick his fall into a vegetative state had been, they told his parents one thing – Martin would probably never come back from the coma…
“Ghost Boy”
This information was tough to admit and shattered Martin’s parents.
They had to accept that for the remainder of his life, it would be just like if he wasn’t there at all – like a ghost. He would be unconscious forever.
So his parents’ only option was to take him home and take care of him until he passed. Or so the doctors said…
Getting used to it
And that’s how things went for a few years. For Martin’s parents, it was heartbreaking to think that the boy they loved had become just an unconscious body.
For everything except his basic bodily functions, it was just like Martin had wasted away.
They still took care of him for all these years and one can only imagine how hard it was for them. But how was it for Martin?
They developed a routine
All his physicians said Martin would pass, but his family refused to accept this and instead, proceeded with a routine.
Every morning his father would get up at 5 a.m., dress Martin, and take him to the care center. At the end of the day, he’d give him a bath, feed him dinner, and put him to bed.
His parents set an alarm to go off every two hours to turn Martin’s body so he wouldn’t get bed sores. That was how they went on with their lives for several years until…
Ill wishes
The entire situation was a tough ordeal not only for Martin but also for his family who had completely lost all hope that he would still wake up.
Because of too much frustration about what happened to her son and desperation to find out what caused it, Martin’s mother recalled saying, “I hope you die” to him.
Although she regretted the words as soon as she’d said them, she had no idea who was listening, and one particular person heard it loud and clear…
The pain of being forgotten
Since Martin crashed into a coma, everyone just got used to him physically being there but not really.
Although his parents took care of him, they frequently forgot about him.
Oftentimes, his entire family – which consisted of his parents, his younger brother, and his younger sister – would go on holidays, leaving medical workers in different care centers to tend to him instead.
Rotten humans
As more years went by and Martin showed no improvement, his family went on with their lives.
Martin got transferred to various care centers, where he, sadly and unknown to his family, was mistreated.
Most were verbal and physical, from caretakers who were under the impression that Martin was entirely unaware of his surroundings.
Martin’s secret
Little did they know, Martin was unwillingly keeping a secret. But he couldn’t tell anybody even if he wanted to.
He had no choice but to keep it all to himself. Stuck in his body, without the ability to move or communicate, he felt doomed.
Martin would count 12 long years before finally being able to reveal the shocking truth to everyone…
What happened?
For two years following his paralyzation, Martin was, in fact, not conscious at all.
He wasn’t aware of anything that was happening around him. He was basically mentally gone.
But something occurred that the doctors did not predict and that no one could ever expect from happening…
His angel and savior
What seemed to be the endless downward spiral in Martin’s life would make an interesting turn when his aromatherapist, Virna van der Walt, began noticing something strange with his demeanor.
She was convinced something happened with Martin but she couldn’t be sure until they had him tested.
Martin was already in his twenties when Virna was finally able to make his parents agree to do something for him…
Finding out the truth
Virna was able to convince Martin’s parents to send him for cognitive testing.
Initially, they think it was pointless because they all believed that Martin was mentally gone for a long time.
But they finally agreed when Virna explained that she was picking up Martin’s subtle “language” such as virtually imperceptible smiles, gazes, and nods he used to indicate he was paying attention.
The results
When the test results arrived, Martin’s family, Virna, and all of his doctors – none of them could believe it.
They had to have the test done twice just to make sure there was no mistake with the findings.
Martin’s parents were in tears. How had they missed this? How long had this been going on without any of them noticing?
Chilling news
The results sent a chill down their spine as it revealed the most unexpected news – Martin had been awake for years!
There was no way to know exactly when he woke up from his coma but the doctor was sure he had been awake for quite a few years already.
He was still paralyzed but the test results revealed that his brain was functioning after all. But how did this happen?
Locked-in syndrome
Martin’s doctors all tried to figure out when and how he woke up from his coma.
But in the same way that they were baffled about his disease, none of them could produce an answer as to how he transitioned from his vegetative state to being mentally awake.
All they know now is that he was currently suffering from a rare disorder of the nervous system called locked-in syndrome. It’s when a person is conscious, awake, and can think with reason, but cannot move or speak – exactly what was happening with Martin.
A miracle
Nevertheless, Martin’s parents didn’t need an answer anymore. As religious people, they knew only God could work such a miracle on Martin.
And knowing that God had been there for their son throughout his struggles was enough for them.
The most important thing then was that Martin was awake and still has a chance to continue his life. But it wasn’t that simple…
Glimmer of hope
The doctors explained that although Martin’s brain was healthy and fully functional, there was still one big and very obvious problem – Martin was still paralyzed.
His parents were too overwhelmed by the fact that Martin was awake that they almost forgot he still couldn’t move!
Fortunately, one of his doctors knew of a way to finally start rehabilitating Martin…
Tears of joy
Step by step and through the help of various doctors and therapists, Martin could slowly move again.
First, it was just his eyes – his family noticed he could move them more freely.
Then, his twitches and facial gestures became more evident. And eventually, he did something he wasn’t able to do for more than 12 years that made his family shed tears of joy… he was finally able to smile again!
Learning from scratch
Martin spent a few more years learning to move bigger parts of his body.
It was a tedious process and there were times when he would get so frustrated he wanted to give up.
Just imagine how frustrating it was, being a grown man but learning to move like a baby would. It felt like he was starting his life all over again from scratch. But Martin was determined to get his life back…
Looking back
Throughout his entire rehabilitation process, Martin’s biggest adversary was none other than himself.
He had been trapped inside his own body for so long, not being able to speak his mind, that he had become so used to it.
And now that he was starting to communicate with others again through his gestures, Martin sometimes would get so overwhelmed thinking about the years he spent with only his own thoughts to entertain him.
The feeling of powerlessness
What really got to him was the feeling of complete and utter powerlessness for years.
Every single aspect of his life was controlled and determined by someone else for twelve whole years, all the while he was actually awake and aware of everything.
Even at times when he actually had a preference over one thing, there was no way for him to communicate that to his carers, so they ultimately decide for him. It was as if someone else had completely taken over his life, although not by choice…
Loneliness and despair
As one would imagine, all of the frustration and despair took a toll on Martin emotionally.
Even though he was being cared for round the clock, he could not help but think that in reality, he was actually all alone.
He couldn’t talk to anyone and the only thing that kept him going was seeing his parents in the room with him every day. But more than being alone, one thing was breaking his heart the most…
His poor parents
He felt all alone, that was true, but he had somehow already accepted that.
What was more heartbreaking for him was seeing his parents go through this difficult and trying time for years.
Every day, they would come to care for him and Martin could see how tired they were. But even at times when they seem to have lost hope, they never truly did.
He heard his mom
Yes, Martin was awake when his mom said, “I hope you die,” and it was extremely painful for him. He couldn’t cry out the pain, but he ultimately realized that his mom didn’t mean it in a bad way.
She just wanted Martin’s suffering to be over because she loved him so much that she couldn’t bear seeing him in that state anymore.
And Martin was desperate to tell her how much he loved and appreciated her and his dad, but he just couldn’t. There was no way…
His worst memories
As if his suffering wasn’t enough, there was one thing Martin particularly disliked and made his days even worse – it was that purple dinosaur, Barney.
Martin spent a lot of time at a special care center and they would play Barney reruns for hours on end.
He couldn’t even describe how much he hated Barney at this point. He could never watch even a minute of that show ever again. It was as if he was traumatized by Barney. And just thinking about it makes him sick.
Supportive family
Luckily for him, Martin’s family was very supportive and was with him every step of the way.
They kept him going when he couldn’t anymore. And sure enough, after years of rehab and therapy, Martin was fully able to move again.
But there was one thing he could never do again. And Martin would have a hard time accepting it…
Short-lived celebration
After his successful rehab to fully regain control of his limbs and muscles, Martin’s family and caretakers were overwhelmed with joy. Even Martin couldn’t stop smiling now!
But the celebration would be short-lived because just as they were ready to proceed to the next step of his therapy, they would receive another devastating news from his doctors…
Voiceless
Although Martin could now move, there was one thing he could never do anymore.
All those years he spent paralyzed and not being able to express himself, Martin had lost something he couldn’t get back even if he wanted to – his voice.
According to Martin’s doctors, he would never be able to speak again – he had completely lost his voice. Is this the end of the line for Martin?
In despair once more
As the bad news dawned on him, Martin found himself engulfed in an overwhelming sense of despair once again.
So many emotions crashed over him. He remembered how it felt like lying in bed and not being able to say the things he wanted, for days on end.
Martin thought those days were beyond him after learning that he still had a chance to regain his old life. How foolish of him to think that everything would be back to normal.
A talkative guy
Days went on and Martin found it harder and harder to accept his new truth.
He remembered that when he was younger, he was a talkative guy. He would often get into arguments with people around him because he used to speak his mind.
Now that he could never speak again, how he wished he could turn back time and just relish those days again.
Personalized gift
Meanwhile, his rehab and therapy continued to prove successful. He could even move his arms and hands freely now!
But because of the significant time spent lying down motionless, Martin’s legs did not develop enough to carry his weight now that he has become a grown man. As a solution, his parents gifted him a personalized wheelchair.
Martin was overjoyed! Although his movements were limited, he was just happy to be moving again.
Acceptance
Looking back at how far he has come from being bedridden, Martin is slowly starting to come to terms with the truth that he would never speak again.
It was a challenging process, filled with moments of sadness and frustration but he gradually learned to accept it, also thanks to his family’s support.
He spent the following days thinking of all the ways he could express himself without talking. He could write, but it would take time and practice. And he was ready for it. When all of a sudden, his prayers were answered…
Special technology
As if on cue, an opportunity came knocking – one that Martin never would have imagined…
Naturally, technology had evolved so much since Martin became sick 14 years ago.
And as fate would have it, recent technology had emerged allowing Martin to communicate with his doctors and loved ones!
Magic keyboard
Martin didn’t know how to react to the news because it was simply unbelievable that this technology would come just when he needed it!
It was a specialized computer keyboard that comes with a device that would voice out whatever Martin wants to say. It was like magic for him!
Their main goal now was to get a hold of this device and get him acquainted with it as soon as possible.
He was a natural
Thanks to Martin’s doctors, acquiring the special device didn’t take time. That was the easy part.
It also wasn’t hard for Martin to learn the technology behind it because he liked electronics as a kid. He was a natural!
The hard part was getting it equipped with his specialized wheelchair. But Martin’s parents were very supportive and more excited about his progress than him so they wasted no time doing that.
Communicating again
The first time Martin was able to communicate using the device, he almost cried. The feeling was just surreal!
He couldn’t believe he was finally able to say something after 13 long years of speaking only inside his mind.
Martin wanted to say so many things all at once but what really made him emotional was the first time he said what he had been wanting to for so many years…
What’s for supper?
As Martin learned the tech, he began learning how to say key phrases like “I am uncomfortable,” or “I would like something to drink.”
But one phrase he managed to say would stick in his mind forever…
“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.
New possibilities
As Martin continued to learn the ropes of his new technology that allowed him to communicate with his doctors and the people he loved, he began to realize just how powerful the equipment really was.
It enabled him to read, write, socialize, and most importantly, start making decisions for himself once again – something that he wasn’t able to do for a very long time.
But the marvel of Martin’s new life didn’t stop there. Because with these new abilities also came responsibilities that he now had to bear the weight of. And was it time? Was Martin really ready for it?
