A MAN has shared the terrifying reality of living trapped in his own body “like a ghost” for more than a decade – unable to talk, move or let anyone know he was awake.
Martin Pistorius, 47, from Johannesburg, South Africa, came home from school suffering with a sore throat when he was 12.
His condition became rapidly worse and he was diagnosed with cryptococcal meningitis and tuberculosis of the brain at hospital.
Martin’s body became weaker and he lost the ability to speak and control his movements, leaving him mute and wheelchair bound.
His parents were told he had an unknown degenerative disease that left him in a vegetative state, with the mind of a baby and less than two years to live.
However, in reality his mind returned after four years despite him still being unable to communicate or move, leaving him a prisoner in his own body.
He told LabBible: “I was able to hear, see and understand everything around me but I had absolutely no power or control over anything.
“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.”
While everyone assumed he was still in a coma, Martin’s mind ran free and he was forced to rely heavily on his imagination for entertainment.
He said he “lived” in his mind to the point where at times he “was oblivious to the world around” him.
Some caretakers abused him, believing he was unaware of his surroundings, he said.
Speaking at a TEDx Talk, he said: “With no way to communicate, I became the perfect victim: a defenceless object, seemingly devoid of feelings that people used to play out their darkest desires.
“For more than 10 years, people who were charged with my care abused me physically, verbally and sexually.
“Despite what they thought, I did feel. The first time it happened, I was shocked and filled with disbelief.
“How could they do this to me? I was confused. What had I done to deserve this? Part of me wanted to cry and another part wanted to fight.
“Hurt, sadness and anger flooded through me. I felt worthless. There was no one to comfort me.
“But neither of my parents knew this was happening. I lived in terror, knowing it would happen again and again.
“I just never knew when. All I knew was that I would never be the same.”
ROAD TO RECOVERY
He longed for the day someone would notice that his mind was active again, so he could be freed from his reality.
His world changed in 2001 when he was 25 after Virna van der Walt, an aromatherapist at the day centre he stayed at, “became convinced” he was reacting to things she was saying.
She encouraged his parents to take him to the Centre For Augmentative and Alternative Communication at the University Of Pretoria, where he was given tests.
Within a year, he began using computer programs to communicate and his body started to regain strength.
I was perceived to be an inanimate object, a mindless phantom of a boy in a wheelchair
Martin Pistorius
He got his first job working as a photocopier before getting a job in computing and a dog he “had been dreaming about for years”.
Martin met his now-wife Joan in 2008 through his sister Kim and they married the following year, helping him to “challenge my own misconceptions about myself”.
He said: “Once, I was perceived to be an inanimate object, a mindless phantom of a boy in a wheelchair.
“Today, I am so much more. A husband, a son, a friend, a brother, a business owner, a first-class honours graduate, a keen amateur photographer.
“It is my ability to communicate that has given me all this.”
What is a vegtative state and is it possible to recover
What is a vegetative state?
A vegetative state is when someone is awake but is showing no signs of awareness.
A person in a vegetative state may be able to:
- open their eyes
- wake up and fall asleep at regular intervals
- have basic reflexes (such as blinking when they’re startled by a loud noise or withdrawing their hand when it’s squeezed hard)
- able to regulate their heartbeat and breathing without assistance
However, someone in a vegetative state doesn’t show any meaningful responses. For example they won’t be able to follow an object with their eyes or respond to voices.
They also show no signs emotions.
If a person is in a vegetative state for over fours weeks they are considered to be in a continuing vegetative state.
If it’s been more than six months and caused by a non-traumatic brain injury, or more than 12 months if caused by a traumatic brain injury it is considered a permanent vegetative state.
Is recovery possible?
If a person is diagnosed as being in a permanent vegetative state, recovery is extremely unlikely but not impossible.
Recovery depends on the type of brain injury the patient has endured, their age, how long they have been in the state for and how severe their injury is.
A non-traumatic brain injury may be the result of an illness within the body.
A traumatic injury is usually the result of a violent attack, a fall, a gunshot wound or even a bomb blast.
People in a permanent vegetative state are extremely unlikely to recover from a brain injury, although it is not impossible.
On July 30, 2018, the Supreme Court ruled a man with an extensive brain injury should be allowed to die without his family going before a judge.