What would you consider to be worse? Losing over a decade of your life, having it be gone in an instant, or being there for it but having no control?
Of course, neither is really favorable, but both can be experienced by those who fall into comas. Lived experiences from coma survivors have told both sides of this story, though rarely is it for as long as a decade. Unfortunately, that was exactly the case for one man who fell into a coma as a young boy, waking up as a man 13 years later.
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Next To Death
The experience of falling into a coma or watching a loved one do the same is frightening to imagine. Losing so much time to a mysterious, unwaking state can change someone's life forever, let alone what they might experience or changes they may go through upon waking up, as the body enters a limbo between conscious and unconscious thought; leaving uncertainty as to how to proceed.
The best knowledge we have about comas as an experience (aside from professional insights) are stories from those who have lived through extensive comas themselves, like one man who spent over 10 years unconscious.
Martin Pistorius, who's now 47, was in a coma for over a decade in his youth—an experience he's documented in a book titled Ghost Boy.
When he was 12 years old, Pistorius came home with a sore throat, completely unaware that it was just the first symptom of an illness that would wind up changing his life forever.
Doctors originally believed it to just be the flu, so he was given a usual treatment course and sent on his way.
Unfortunately, Pistorious' condition would continue to get worse and worse until he was eventually hospitalized.
"I tested positive for cryptococcal meningitis and tuberculosis of the brain and was treated for both," he shared when speaking with LADbible. “My body weakened and I lost the ability to speak and control my movements.”
He was in a completely vegetative state, but his family was never given a concrete reason as to why his body shut down, as his diagnoses alone aren't usually enough to cause such a reaction.
Because of the uncertainty around his condition, and the mystery of why he'd fallen unconscious, his parents knew not to give up on him until they at least had answers.
They urged doctors to keep him alive in a care center while they searched for reasoning, but little did they know that he would eventually be able to describe what he was feeling at the time.
Pistorius explained that being in such a state had him feeling like "an empty shell, unaware of anything around me."
"I was able to hear, see and understand everything around me but I had absolutely no power or control over anything," he explained. "For me, that feeling of complete and utter powerlessness is probably the worst feeling I have ever experienced, and I hope I never have to experience again. It is like you don't exist, every single thing in your life is decided by someone else."
"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."
When he did eventually regain consciousness, nobody realized at first as he still couldn't move his body, though his eyes were open. All he could do was continue to lay there as he remained perfectly aware of everything that happened around him.
He's still able to recall how the care center would only play reruns of Barney on the nearby TV, which he grew to hate over time. "I cannot even express to you how much I hated Barney," he said.
Being this aware also meant he heard and understood everything that was being said to him.
He told a specific story from when he was seated in a wheelchair while his mom was visiting when she said to him, "I hope you die." While hurt, stating that the comment made him feel "very sad and upset," he also says he "understood where that was coming from" as his prolonged condition likely put a lot of stress on his parents.
The Power Of The Mind
To stay sane during his extremely long leave from the physical plane, he had to flex his imagination. "I'd imagine all sorts of things, like being very small and climbing into a spaceship and flying away. Or that my wheelchair would magically transform into a flying vehicle.
"I would sometimes watch things move, whether it be how sunlight moved throughout the day. Or watching insects of some sort scurry about, but, really, I lived in my mind to the point where at times I was oblivious to the world around me."
It wasn't until he was 25 that a relief carer at the center he was staying at encouraged Pistorius' parents to have him moved to the Centre For Augmentative And Alternative Communication at the University Of Pretoria.
It was there that a researcher was able to show that his consciousness was very much awake and active. They did so by holding up an image and asking Pistorius to locate items in that image with his eyes, which he did so correctly
Finally, after 13 years, his family knew his brain was still alive. This was in 2003.
Return To Freedom
After seeing that he could communicate in some ways, his parents invested in a specialized computer with preloaded communication software, one similar to the device Stephen Hawking used to speak.
Through this, he was able to select letters, words, and symbols via an electronic band attached to his head that functioned like a computer mouse. Finally, he was able to have an ounce of freedom again, able to express his wants and needs after years of forced silence.
From there, he began a more intense physical therapy program that saw him on the road to recovery.
A Fulfilling Life
He's gained back much of his motor abilities, including the use of his hands, though he still uses his computer to communicate. He eventually met the love of his life, Joanna, and would marry her six years later in 2009.
In 2018, the two had a son, Sebastian, whom Pistorius loves with all his heart.
Today, he works as a computer scientist and web developer. He frequently posts photos of family outings, speaking events, and wheelchair races he participates in.
Pistorius' story is not only a fascinating insight into what it's like to be in a coma, cut off from the world in unimaginable ways as it continues around you, but also a stunning display of the strength of the human spirit.
Spending so long in an impenetrable bubble, losing one's teenage years to an unmoving body but an active mind...to some, that sounds like a fate worse than death. However, once he was given freedom again, instead of letting those years weigh down on him any further, Pistorius used them as motivation to never take anything for granted and to reach for every opportunity presented to him.
Through dire circumstances, he was reminded that every day can contain the best that life has to offer, something we should all remember every day.