TEDxKC
Martin Pistorius: How my mind came back to life — and no one knew
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Imagine being unable to say, "I am hungry," "I am in pain," "thank you," or "I love you,” -- losing your ability to communicate, being trapped inside your body, surrounded by people yet utterly alone. For 13 long years, that was Martin Pistorius’s reality. After contracting a brain infection at the age of twelve, Pistorius lost his ability to control his movements and to speak, and eventually he failed every test for mental awareness. He had become a ghost. But then a strange thing started to happen -- his mind began to knit itself back together. In this moving talk, Pistorius tells how he freed himself from a life locked inside his own body.
Martin Pistorius - Author, designer
At age 12, Martin Pistorius fell into a coma, and spent 13 years locked inside his body, unable to communicate -- until a caregiver noticed his eyes responded to her. His book "Ghost Boy" tells his story. Full bio
At age 12, Martin Pistorius fell into a coma, and spent 13 years locked inside his body, unable to communicate -- until a caregiver noticed his eyes responded to her. His book "Ghost Boy" tells his story. Full bio
Double-click the English transcript below to play the video.
00:12
Imagine being unable to say,
"I am hungry," "I am in pain,"
"I am hungry," "I am in pain,"
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"thank you," or "I love you."
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Being trapped inside your body,
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a body that doesn't respond to commands.
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Surrounded by people,
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yet utterly alone.
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Wishing you could reach out,
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to connect, to comfort, to participate.
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For 13 long years, that was my reality.
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Most of us never think twice
about talking, about communicating.
about talking, about communicating.
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I've thought a lot about it.
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I've had a lot of time to think.
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For the first 12 years of my life,
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I was a normal, happy, healthy little boy.
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Then everything changed.
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I contracted a brain infection.
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The doctors weren't sure what it was,
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but they treated me the best they could.
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However, I progressively got worse.
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Eventually, I lost my ability
to control my movements,
to control my movements,
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make eye contact,
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and finally, my ability to speak.
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While in hospital,
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I desperately wanted to go home.
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I said to my mother, "When home?"
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Those were the last words
I ever spoke with my own voice.
I ever spoke with my own voice.
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I would eventually fail every test
for mental awareness.
for mental awareness.
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My parents were told
I was as good as not there.
I was as good as not there.
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A vegetable, having the intelligence
of a three-month-old baby.
of a three-month-old baby.
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They were told to take me home
and try to keep me comfortable
and try to keep me comfortable
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until I died.
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My parents, in fact
my entire family's lives,
my entire family's lives,
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became consumed by taking care of me
the best they knew how.
the best they knew how.
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Their friends drifted away.
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One year turned to two,
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two turned to three.
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It seemed like the person I once was
began to disappear.
began to disappear.
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The Lego blocks and electronic circuits
I'd loved as a boy were put away.
I'd loved as a boy were put away.
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I had been moved out of my bedroom
into another more practical one.
into another more practical one.
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I had become a ghost,
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a faded memory of a boy
people once knew and loved.
people once knew and loved.
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Meanwhile, my mind began
knitting itself back together.
knitting itself back together.
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Gradually, my awareness started to return.
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But no one realized
that I had come back to life.
that I had come back to life.
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I was aware of everything,
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just like any normal person.
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I could see and understand everything,
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but I couldn't find a way
to let anybody know.
to let anybody know.
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My personality was entombed
within a seemingly silent body,
within a seemingly silent body,
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a vibrant mind hidden in plain sight
within a chrysalis.
within a chrysalis.
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The stark reality hit me
that I was going to spend
that I was going to spend
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the rest of my life locked inside myself,
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totally alone.
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I was trapped with only
my thoughts for company.
my thoughts for company.
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I would never be rescued.
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No one would ever show me tenderness.
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I would never talk to a friend.
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No one would ever love me.
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I had no dreams, no hope,
nothing to look forward to.
nothing to look forward to.
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Well, nothing pleasant.
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I lived in fear,
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and, to put it bluntly,
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was waiting for death
to finally release me,
to finally release me,
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expecting to die all alone in a care home.
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I don't know if it's truly possible
to express in words
to express in words
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what it's like not to be able
to communicate.
to communicate.
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Your personality appears
to vanish into a heavy fog
to vanish into a heavy fog
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and all of your emotions and desires are
constricted, stifled and muted within you.
constricted, stifled and muted within you.
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For me, the worst was the feeling
of utter powerlessness.
of utter powerlessness.
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I simply existed.
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It's a very dark place to find yourself
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because in a sense, you have vanished.
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Other people controlled
every aspect of my life.
every aspect of my life.
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They decided what I ate and when.
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Whether I was laid on my side
or strapped into my wheelchair.
or strapped into my wheelchair.
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I often spent my days
positioned in front of the TV
positioned in front of the TV
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watching Barney reruns.
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I think because Barney
is so happy and jolly,
is so happy and jolly,
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and I absolutely wasn't,
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it made it so much worse.
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I was completely powerless
to change anything in my life
to change anything in my life
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or people's perceptions of me.
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I was a silent, invisible observer
of how people behaved
of how people behaved
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when they thought no one was watching.
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Unfortunately, I wasn't only an observer.
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With no way to communicate,
I became the perfect victim:
I became the perfect victim:
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a defenseless object,
seemingly devoid of feelings
seemingly devoid of feelings
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that people used
to play out their darkest desires.
to play out their darkest desires.
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For more than 10 years,
people who were charged with my care
people who were charged with my care
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abused me physically,
verbally and sexually.
verbally and sexually.
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Despite what they thought, I did feel.
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The first time it happened,
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I was shocked and filled with disbelief.
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How could they do this to me?
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I was confused.
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What had I done to deserve this?
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Part of me wanted to cry
and another part wanted to fight.
and another part wanted to fight.
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Hurt, sadness and anger
flooded through me.
flooded through me.
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I felt worthless.
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There was no one to comfort me.
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But neither of my parents
knew this was happening.
knew this was happening.
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I lived in terror, knowing
it would happen again and again.
it would happen again and again.
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I just never knew when.
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All I knew was that I would
never be the same.
never be the same.
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I remember once listening
to Whitney Houston singing,
to Whitney Houston singing,
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"No matter what they take from me,
they can't take away my dignity."
they can't take away my dignity."
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And I thought to myself,
"You want to bet?"
"You want to bet?"
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Perhaps my parents could have
found out and could have helped.
found out and could have helped.
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But the years of constant caretaking,
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having to wake up
every two hours to turn me,
every two hours to turn me,
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combined with them essentially
grieving the loss of their son,
grieving the loss of their son,
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had taken a toll on my mother and father.
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Following yet another heated argument
between my parents,
between my parents,
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in a moment of despair and desperation,
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my mother turned to me
and told me that I should die.
and told me that I should die.
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I was shocked, but as I thought
about what she had said,
about what she had said,
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I was filled with enormous compassion
and love for my mother,
and love for my mother,
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yet I could do nothing about it.
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There were many moments when I gave up,
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sinking into a dark abyss.
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I remember one particularly low moment.
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My dad left me alone in the car
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while he quickly went
to buy something from the store.
to buy something from the store.
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A random stranger walked past,
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looked at me and he smiled.
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I may never know why, but that simple act,
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the fleeting moment of human connection,
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transformed how I was feeling,
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making me want to keep going.
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My existence was tortured by monotony,
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a reality that was often too much to bear.
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Alone with my thoughts,
I constructed intricate fantasies
I constructed intricate fantasies
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about ants running across the floor.
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I taught myself to tell the time
by noticing where the shadows were.
by noticing where the shadows were.
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As I learned how the shadows moved
as the hours of the day passed,
as the hours of the day passed,
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I understood how long it would be
before I was picked up and taken home.
before I was picked up and taken home.
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Seeing my father walk
through the door to collect me
through the door to collect me
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was the best moment of the day.
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My mind became a tool that I could use
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to either close down
to retreat from my reality
to retreat from my reality
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or enlarge into a gigantic space
that I could fill with fantasies.
that I could fill with fantasies.
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I hoped that my reality would change
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and someone would see
that I had come back to life.
that I had come back to life.
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But I had been washed away
like a sand castle
like a sand castle
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built too close to the waves,
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and in my place was the person
people expected me to be.
people expected me to be.
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To some I was Martin,
a vacant shell, the vegetable,
a vacant shell, the vegetable,
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deserving of harsh words,
dismissal and even abuse.
dismissal and even abuse.
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To others, I was the tragically
brain-damaged boy
brain-damaged boy
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who had grown to become a man.
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Someone they were kind to and cared for.
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Good or bad, I was a blank canvas
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onto which different versions
of myself were projected.
of myself were projected.
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It took someone new
to see me in a different way.
to see me in a different way.
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An aromatherapist began coming
to the care home about once a week.
to the care home about once a week.
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Whether through intuition
or her attention to details
or her attention to details
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that others failed to notice,
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she became convinced that I could
understand what was being said.
understand what was being said.
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She urged my parents
to have me tested by experts
to have me tested by experts
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in augmentative
and alternative communication.
and alternative communication.
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And within a year,
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I was beginning to use
a computer program to communicate.
a computer program to communicate.
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It was exhilarating,
but frustrating at times.
but frustrating at times.
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I had so many words in my mind,
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that I couldn't wait
to be able to share them.
to be able to share them.
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Sometimes, I would say things to myself
simply because I could.
simply because I could.
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In myself, I had a ready audience,
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and I believed that by expressing
my thoughts and wishes,
my thoughts and wishes,
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others would listen, too.
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But as I began to communicate more,
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I realized that it was in fact
only just the beginning
only just the beginning
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of creating a new voice for myself.
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I was thrust into a world
I didn't quite know how to function in.
I didn't quite know how to function in.
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I stopped going to the care home
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and managed to get my first job
making photocopies.
making photocopies.
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As simple as this may sound,
it was amazing.
it was amazing.
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My new world was really exciting
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but often quite overwhelming
and frightening.
and frightening.
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I was like a man-child,
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and as liberating as it often was,
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I struggled.
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I also learned that many of those
who had known me for a long time
who had known me for a long time
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found it impossible to abandon the idea
of Martin they had in their heads.
of Martin they had in their heads.
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While those I had only just met
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struggled to look past the image
of a silent man in a wheelchair.
of a silent man in a wheelchair.
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I realized that some people
would only listen to me
would only listen to me
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if what I said was in line
with what they expected.
with what they expected.
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Otherwise, it was disregarded
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and they did what they felt was best.
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I discovered that true communication
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is about more than merely
physically conveying a message.
physically conveying a message.
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It is about getting the message
heard and respected.
heard and respected.
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Still, things were going well.
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My body was slowly getting stronger.
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I had a job in computing that I loved,
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and had even got Kojak, the dog
I had been dreaming about for years.
I had been dreaming about for years.
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However, I longed to share
my life with someone.
my life with someone.
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I remember staring out the window
as my dad drove me home from work,
as my dad drove me home from work,
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thinking I have so much love inside of me
and nobody to give it to.
and nobody to give it to.
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Just as I had resigned myself
to being single for the rest of my life,
to being single for the rest of my life,
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I met Joan.
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Not only is she the best thing
that has ever happened to me,
that has ever happened to me,
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but Joan helped me to challenge
my own misconceptions about myself.
my own misconceptions about myself.
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Joan said it was through my words
that she fell in love with me.
that she fell in love with me.
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However, after all I had been through,
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I still couldn't shake the belief
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that nobody could truly see
beyond my disability
beyond my disability
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and accept me for who I am.
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I also really struggled
to comprehend that I was a man.
to comprehend that I was a man.
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The first time someone
referred to me as a man,
referred to me as a man,
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it stopped me in my tracks.
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I felt like looking around
and asking, "Who, me?"
and asking, "Who, me?"
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That all changed with Joan.
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We have an amazing connection
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and I learned how important it is
to communicate openly and honestly.
to communicate openly and honestly.
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I felt safe, and it gave me the confidence
to truly say what I thought.
to truly say what I thought.
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I started to feel whole again,
a man worthy of love.
a man worthy of love.
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I began to reshape my destiny.
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I spoke up a little more at work.
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I asserted my need for independence
to the people around me.
to the people around me.
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Being given a means of communication
changed everything.
changed everything.
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I used the power of words and will
to challenge the preconceptions
to challenge the preconceptions
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of those around me
and those I had of myself.
and those I had of myself.
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Communication is what makes us human,
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enabling us to connect
on the deepest level
on the deepest level
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with those around us --
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telling our own stories,
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expressing wants, needs and desires,
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or hearing those of others
by really listening.
by really listening.
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All this is how the world
knows who we are.
knows who we are.
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So who are we without it?
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True communication increases understanding
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and creates a more caring
and compassionate world.
and compassionate world.
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Once, I was perceived
to be an inanimate object,
to be an inanimate object,
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a mindless phantom
of a boy in a wheelchair.
of a boy in a wheelchair.
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Today, I am so much more.
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A husband, a son, a friend,
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a brother, a business owner,
a first-class honors graduate,
a first-class honors graduate,
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a keen amateur photographer.
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It is my ability to communicate
that has given me all this.
that has given me all this.
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We are told that actions
speak louder than words.
speak louder than words.
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But I wonder,
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do they?
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Our words, however we communicate them,
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are just as powerful.
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Whether we speak the words
with our own voices,
with our own voices,
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type them with our eyes,
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or communicate them non-verbally
to someone who speaks them for us,
to someone who speaks them for us,
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words are among our most powerful tools.
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I have come to you through
a terrible darkness,
a terrible darkness,
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pulled from it by caring souls
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and by language itself.
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The act of you listening to me today
brings me farther into the light.
brings me farther into the light.
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We are shining here together.
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If there is one most difficult obstacle
to my way of communicating,
to my way of communicating,
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it is that sometimes I want to shout
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and other times simply to whisper
a word of love or gratitude.
a word of love or gratitude.
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It all sounds the same.
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But if you will,
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please imagine these next two words
as warmly as you can:
as warmly as you can:
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Thank you.
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(Applause)
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ABOUT THE SPEAKER
Martin Pistorius - Author, designerAt age 12, Martin Pistorius fell into a coma, and spent 13 years locked inside his body, unable to communicate -- until a caregiver noticed his eyes responded to her. His book "Ghost Boy" tells his story.
Why you should listen
Martin Pistorius is a web designer and author whose personal story borders on the unimaginable. In his book Ghost Boy, he tells the story of his return to consciousness after a horrible illness ... and his struggle to tell the world that he was still there, inside his body, hoping to communicate.
More profile about the speakerMartin Pistorius | Speaker | TED.com