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!
