When he was just twelve years old, Martin Pistorius came down with a strange illness
that puzzled his parents and doctors and left him in a coma.
Doctors told his parents to prepare for the worst, but Martin clung to life in an apparently
vegetative state for more than a decade.
When Martin miraculously woke up from his coma twelve years later, he remembered everything.
He had been trapped in his body, unable to communicate with the world going on around
him, but fully aware of everything happening around - and to - him, for years.
Martin’s illness started out normally enough - he was suffering from headaches, nausea
and vomiting, symptoms that seemed to point to a common flu.
But then, things took a turn for the worse.
The formerly rambunctious pre-teen’s personality completely changed - he seemed reserved, slept
all the time and eventually stopped talking and making eye contact altogether.
Soon he was unable to feed himself, walk, or even get out of bed.
Martin’s parents took him to doctor after doctor, but they were just as confused as
his parents were - there were no obvious reasons for his symptoms, and nothing the doctors
tried made Martin any better.
In fact, he continued to get worse, first becoming wheelchair bound and eventually slipping
into a coma.
Martin’s doctors were mystified - they weren’t exactly sure what caused these mysterious
symptoms, but their best guess was an extremely rare case of cryptococcal meningitis.
Meningitis is an infection of the meninges, the membranes covering the brain and spinal
cord.
Cryptococcus neoformans, or CM for short, is an incredibly rare form of meningitis,
usually diagnosed in people who have compromised immune systems.
Early symptoms include headache, nausea and vomiting, and mental changes like confusion
and personality changes.
If left untreated, CM can lead to brain damage, coma and even death.
The neoformans fungus that causes most cases of CM is found in soil all over the world,
particularly soil that contains bird droppings.
If a doctor suspects CM based on the patient’s symptoms, they’ll perform a painful spinal
tap to confirm the diagnosis.
The infection can be treated with antifungal medication, which usually needs to be taken
indefinitely.
But, since most people who contract CM are already immunocompromised, the infection can
often be fatal.
In Martin’s case, his doctor’s believed that the infection had run rampant and caused
his body to enter a coma state, which led them to believe that his prognosis was not
good.
After more than two years in a coma, the doctors told Martin’s parents that he likely wouldn’t
ever wake up, and that if he did, he would likely have the mind of a three-year old.
They took him home, made him as comfortable as possible, and did their best to adjust
to their new normal.
A coma is a state of prolonged unconsciousness characterized by depressed brainstem reflexes
- a comatose person’s pupils will not respond to light and their bodies show no response
to painful stimuli.
A coma can be caused by a head injury, a stroke, a brain tumour, or an underlying illness or
infection, as in Martin’s case.
Most comas last only a few weeks, and medical attention is crucial to preserving brain function
even during that short time.
If a coma lasts more than a few weeks, the patient will likely transition to a persistent
vegetative state; after more than one year in a coma, it’s highly unlikely that the
person will wake up.
Throughout Martin’s ordeal, his parents’ life revolved around caring for their comatose
son.
Every morning, Martin’s father would wake up early to dress Martin before dropping him
off at the care facility where he spent his days.
Eight hours later, after a full day of work, his father would return to pick him up from
the facility and bring him home.
After bathing him and putting him to bed, Martin’s father would set his alarm to go
off every two hours so that he could get up and turn Martin over to help prevent bedsores.
Their lives continued like this for more than a decade, with Martin’s parents continuing
to love and care for their son despite the fact that doctor’s had told them that the
Martin they knew was gone - at best, they said, he had the mind of a three year old,
if he was even aware at all.
At least, that’s what they thought.
Meanwhile, Martin was aware of everything that was going on around him.
About two years after he fell into his coma, Martin’s mind woke up, with his intellect
fully intact, although the rest of his body remained immobile and he was trapped in a
body that couldn’t move, speak or even make eye contact.
But Martin could hear and see everything that was going on around him - and he remembered
everything.
In one of the care facilities that he spent time at, the staff would dump him in front
of a TV playing children’s shows for hours on end.
Day after day he sat helpless in front of the TV with nothing but reruns of the Barney
and Friends TV show to focus on.
To this day, Martin cannot overstate how much he hates Barney.
But annoying kids’ shows were the least of the abuses he experienced.
Everyone around Martin - his parents, his doctors and the caretakers watching over him
- all believed that Martin was in a vegetative state, unaware of his surroundings and unable
to speak up or protect himself.
For some monstrous individuals, Martin appeared to be the perfect victim - helpless, silent
and oblivious - and the way they treated him was truly shocking.
Martin remembers every detail of the abuse he experienced at care facility after care
facility.
Some of the caregivers seemed to get a little too much enjoyment from the act of testing
his response to painful stimuli.
He remembered being pinched, slapped and even hit routinely in a way that was clearly not
meant to be therapeutic.
He was left alone outside in the blistering heat, and left wet and shivering for hours
after a bath.
In one particularly gruesome incident, Martin remembers a nurse feeding him his own vomit
as punishment for not being able to stop himself from throwing up after being fed scalding
hot food.
He even remembers experiencing sexual abuse at the hands of those who were meant to be
caring for him and protecting him.
But perhaps worst of all was the mental abuse.
Thinking that Martin was vegetative and unaware, caregivers would routinely hurl abuse at him
- they called him names like freak, dummy, donkey, a heap of rubbish - and those were
the milder ones.
The lowest point, though, came when his own mother told him she wished he would die.
Martin was shocked and hurt - how could his own mother wish death on him?
Amazingly, though, Martin was able to use these feelings as fuel, and began to take
control of his own mind.
If he couldn’t escape his physical situation, he was going to do his best to escape mentally
and preserve whatever sanity he had left.
Martin survived the abuse and isolation by learning to disengage his mind.
He said “You simply exist.
It’s a very dark place to find yourself because, in a sense, you are allowing yourself
to vanish.”
Martin developed coping mechanisms, like tracking the sun’s shadow as it moved across the
room, watching insects and having conversations with himself in his head.
As he strengthened his mind, Martin began to have compassion for his mother and her
harsh words.
He realized when she looked at him, all she could see was the son she had lost.
To her, it was like her son had died when he was twelve years old.
Martin could tell she was in pain, and often worried that she wasn’t a good mother, wasn’t
taking good enough care of him.
The worst part was that Martin could do nothing to ease her fears.
Finally, after more than a decade trapped in an immobile body and unable to communicate,
Martin experienced the first ray of hope!
A new caretaker was compassionate enough to see Martin as a person, not just a body.
She actually looked into his eyes and spoke to him, not just at him, and she was the first
person in nearly a decade to notice that Martin appeared to show signs of comprehension when
she spoke to him.
Virna Van Der Walt would later say that she could tell by the sparkle in his eyes that
Martin was conscious and trying to communicate.
She managed to convince his parents to take him for extensive cognitive testing, where
they got the shock of a lifetime - Martin’s mind was perfectly healthy.
He was awake and aware...and he remembered everything.
This discovery was only the very first step on a long, hard road to recovery, but it was
the hope that Martin and his parents had been dreaming of for more than a decade.
Martin underwent extreme rehabilitation to begin repairing the damage caused by more
than a decade of immobility.
After years of inactivity, his muscles had atrophied and he had lost many of his fine
motor skills.
Martin had to relearn many of the activities of daily living that we take for granted - how
to sit up, how to dress and bathe himself, how to feed himself, even how to use his hands.
He also had to relearn how to communicate, which he did with the help of a computer.
Martin is still confined to a wheelchair, and he may never walk again, but he’s well
on his way to living a full and independent life.
In fact, Martin went on to live a shockingly normal life after his ordeal - he graduated
university, got a job as a computer programmer and even married the love of his life.
In twenty-thirteen, Martin wrote a book about his experience, called Ghost Boy: The miraculous
escape of a misdiagnosed boy trapped inside his own body, which became a New York Times
bestseller.
Talk about an inspirational story!
While Martin’s story seems almost too crazy to believe, some doctors are worried that
it is an all too common occurrence.
Dr. Adrian Owen is the author of Into the Gray Zone: A Neuroscientist Explores the Boundary
Between Life and Death.
Dr. Owen believes that fifteen to twenty percent of all patients in persistent vegetative states
or “unresponsive wakefulness” are actually conscious and trapped in their own bodies.
He has spent more than twenty years working with these patients to help better understand
the “gray zone” between consciousness and unconsciousness.
In his book, Dr. Owen provides countless examples of patients whose situation is remarkably
similar to Martin’s.
Take Kate, for example, who found herself in a persistent vegetative state after contracting
encephalomyelitis, another type of inflammation of the brain and spinal cord tissues.
A PET scan showed that Kate’s brain responded normally when she was shown pictures of her
loved ones.
Luckily, Kate recovered from her vegetative state after six months.
Another shocking example is the case of Kevin, a fifty-three year old bus driver who fell
into a coma after suffering a major stroke.
fMRI scans showed brain activity consistent with a normal response when Kevin was asked
to listen to complex sentences.
In another case, a patient named Scott had been comatose for twelve years after a car
accident, but his family was adamant that he was still “in there”.
Dr. Owen asked Kevin to picture himself playing tennis, and the very specific area of our
brain associated with playing sports, the premotor cortex, lit up exactly as it would
for a healthy person.
Scott was even able to answer simple “yes” or “no” questions by imagining tennis
when the answer was “no”.
Prior to Dr. Owen’s work, doctors believed that once someone had been in a persistent
vegetative state for a few months, there was zero chance of recovery.
This assumption has not only left untold thousands of patients suffering in silence, but it has
also led to some catastrophic scenarios - like the Venezualan man Carlos Camejo, who had
been unconscious for ten years following a car accident, only to awaken during his own
autopsy!
Many people in this situation, like Kate, have even attempted to commit suicide by holding
their breath, hoping to exert what little control they had over their own lives.
Doctors and researchers are working to better understand the “gray zone” of consciousness
so that hopefully no one will ever have to go through what Martin, Kate and the thousands
of others trapped in their own bodies have had to endure.
In the meantime, Martin has some advice for us: "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."
If you thought this video about being trapped in your own body was terrifying, be sure and
check out our other videos, like this harrowing tale titled “I Was Trapped in a Canyon for
127 Hours!”.
This will give you something to think about next time you’re trapped in an uncomfortable
situation!
As always, thanks for watching, and don’t forget to like, share and subscribe!
See you next time!