14:09
TEDxKC

Martin Pistorius: How my mind came back to life — and no one knew

Filmed:

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.

- 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

Imagine being unable to say,
"I am hungry," "I am in pain,"
00:12
"thank you," or "I love you."
00:18
Being trapped inside your body,
00:20
a body that doesn't respond to commands.
00:22
Surrounded by people,
00:26
yet utterly alone.
00:27
Wishing you could reach out,
00:29
to connect, to comfort, to participate.
00:31
For 13 long years, that was my reality.
00:35
Most of us never think twice
about talking, about communicating.
00:39
I've thought a lot about it.
00:45
I've had a lot of time to think.
00:47
For the first 12 years of my life,
00:49
I was a normal, happy, healthy little boy.
00:52
Then everything changed.
00:54
I contracted a brain infection.
00:56
The doctors weren't sure what it was,
00:59
but they treated me the best they could.
01:01
However, I progressively got worse.
01:04
Eventually, I lost my ability
to control my movements,
01:07
make eye contact,
01:11
and finally, my ability to speak.
01:13
While in hospital,
01:17
I desperately wanted to go home.
01:18
I said to my mother, "When home?"
01:21
Those were the last words
I ever spoke with my own voice.
01:24
I would eventually fail every test
for mental awareness.
01:28
My parents were told
I was as good as not there.
01:32
A vegetable, having the intelligence
of a three-month-old baby.
01:35
They were told to take me home
and try to keep me comfortable
01:40
until I died.
01:43
My parents, in fact
my entire family's lives,
01:46
became consumed by taking care of me
the best they knew how.
01:49
Their friends drifted away.
01:53
One year turned to two,
01:56
two turned to three.
01:58
It seemed like the person I once was
began to disappear.
02:00
The Lego blocks and electronic circuits
I'd loved as a boy were put away.
02:04
I had been moved out of my bedroom
into another more practical one.
02:09
I had become a ghost,
02:14
a faded memory of a boy
people once knew and loved.
02:15
Meanwhile, my mind began
knitting itself back together.
02:20
Gradually, my awareness started to return.
02:24
But no one realized
that I had come back to life.
02:27
I was aware of everything,
02:30
just like any normal person.
02:32
I could see and understand everything,
02:34
but I couldn't find a way
to let anybody know.
02:37
My personality was entombed
within a seemingly silent body,
02:40
a vibrant mind hidden in plain sight
within a chrysalis.
02:44
The stark reality hit me
that I was going to spend
02:48
the rest of my life locked inside myself,
02:51
totally alone.
02:54
I was trapped with only
my thoughts for company.
02:56
I would never be rescued.
02:59
No one would ever show me tenderness.
03:01
I would never talk to a friend.
03:04
No one would ever love me.
03:07
I had no dreams, no hope,
nothing to look forward to.
03:09
Well, nothing pleasant.
03:14
I lived in fear,
03:16
and, to put it bluntly,
03:17
was waiting for death
to finally release me,
03:19
expecting to die all alone in a care home.
03:22
I don't know if it's truly possible
to express in words
03:26
what it's like not to be able
to communicate.
03:29
Your personality appears
to vanish into a heavy fog
03:32
and all of your emotions and desires are
constricted, stifled and muted within you.
03:36
For me, the worst was the feeling
of utter powerlessness.
03:42
I simply existed.
03:46
It's a very dark place to find yourself
03:48
because in a sense, you have vanished.
03:51
Other people controlled
every aspect of my life.
03:55
They decided what I ate and when.
03:58
Whether I was laid on my side
or strapped into my wheelchair.
04:00
I often spent my days
positioned in front of the TV
04:04
watching Barney reruns.
04:07
I think because Barney
is so happy and jolly,
04:10
and I absolutely wasn't,
04:13
it made it so much worse.
04:15
I was completely powerless
to change anything in my life
04:17
or people's perceptions of me.
04:21
I was a silent, invisible observer
of how people behaved
04:23
when they thought no one was watching.
04:27
Unfortunately, I wasn't only an observer.
04:29
With no way to communicate,
I became the perfect victim:
04:33
a defenseless object,
seemingly devoid of feelings
04:37
that people used
to play out their darkest desires.
04:41
For more than 10 years,
people who were charged with my care
04:45
abused me physically,
verbally and sexually.
04:48
Despite what they thought, I did feel.
04:52
The first time it happened,
04:56
I was shocked and filled with disbelief.
04:58
How could they do this to me?
05:00
I was confused.
05:03
What had I done to deserve this?
05:04
Part of me wanted to cry
and another part wanted to fight.
05:07
Hurt, sadness and anger
flooded through me.
05:11
I felt worthless.
05:15
There was no one to comfort me.
05:17
But neither of my parents
knew this was happening.
05:20
I lived in terror, knowing
it would happen again and again.
05:23
I just never knew when.
05:27
All I knew was that I would
never be the same.
05:29
I remember once listening
to Whitney Houston singing,
05:33
"No matter what they take from me,
they can't take away my dignity."
05:37
And I thought to myself,
"You want to bet?"
05:41
Perhaps my parents could have
found out and could have helped.
05:47
But the years of constant caretaking,
05:50
having to wake up
every two hours to turn me,
05:53
combined with them essentially
grieving the loss of their son,
05:56
had taken a toll on my mother and father.
05:59
Following yet another heated argument
between my parents,
06:02
in a moment of despair and desperation,
06:06
my mother turned to me
and told me that I should die.
06:09
I was shocked, but as I thought
about what she had said,
06:14
I was filled with enormous compassion
and love for my mother,
06:17
yet I could do nothing about it.
06:21
There were many moments when I gave up,
06:24
sinking into a dark abyss.
06:27
I remember one particularly low moment.
06:29
My dad left me alone in the car
06:32
while he quickly went
to buy something from the store.
06:34
A random stranger walked past,
06:38
looked at me and he smiled.
06:41
I may never know why, but that simple act,
06:44
the fleeting moment of human connection,
06:48
transformed how I was feeling,
06:50
making me want to keep going.
06:52
My existence was tortured by monotony,
06:55
a reality that was often too much to bear.
06:58
Alone with my thoughts,
I constructed intricate fantasies
07:01
about ants running across the floor.
07:05
I taught myself to tell the time
by noticing where the shadows were.
07:09
As I learned how the shadows moved
as the hours of the day passed,
07:14
I understood how long it would be
before I was picked up and taken home.
07:18
Seeing my father walk
through the door to collect me
07:23
was the best moment of the day.
07:26
My mind became a tool that I could use
07:29
to either close down
to retreat from my reality
07:31
or enlarge into a gigantic space
that I could fill with fantasies.
07:34
I hoped that my reality would change
07:39
and someone would see
that I had come back to life.
07:41
But I had been washed away
like a sand castle
07:44
built too close to the waves,
07:47
and in my place was the person
people expected me to be.
07:49
To some I was Martin,
a vacant shell, the vegetable,
07:53
deserving of harsh words,
dismissal and even abuse.
07:57
To others, I was the tragically
brain-damaged boy
08:02
who had grown to become a man.
08:04
Someone they were kind to and cared for.
08:07
Good or bad, I was a blank canvas
08:10
onto which different versions
of myself were projected.
08:12
It took someone new
to see me in a different way.
08:17
An aromatherapist began coming
to the care home about once a week.
08:20
Whether through intuition
or her attention to details
08:24
that others failed to notice,
08:27
she became convinced that I could
understand what was being said.
08:29
She urged my parents
to have me tested by experts
08:33
in augmentative
and alternative communication.
08:37
And within a year,
08:40
I was beginning to use
a computer program to communicate.
08:42
It was exhilarating,
but frustrating at times.
08:46
I had so many words in my mind,
08:49
that I couldn't wait
to be able to share them.
08:51
Sometimes, I would say things to myself
simply because I could.
08:54
In myself, I had a ready audience,
08:59
and I believed that by expressing
my thoughts and wishes,
09:02
others would listen, too.
09:05
But as I began to communicate more,
09:07
I realized that it was in fact
only just the beginning
09:09
of creating a new voice for myself.
09:12
I was thrust into a world
I didn't quite know how to function in.
09:15
I stopped going to the care home
09:19
and managed to get my first job
making photocopies.
09:21
As simple as this may sound,
it was amazing.
09:25
My new world was really exciting
09:28
but often quite overwhelming
and frightening.
09:30
I was like a man-child,
09:33
and as liberating as it often was,
09:35
I struggled.
09:37
I also learned that many of those
who had known me for a long time
09:39
found it impossible to abandon the idea
of Martin they had in their heads.
09:43
While those I had only just met
09:47
struggled to look past the image
of a silent man in a wheelchair.
09:49
I realized that some people
would only listen to me
09:54
if what I said was in line
with what they expected.
09:56
Otherwise, it was disregarded
09:59
and they did what they felt was best.
10:01
I discovered that true communication
10:04
is about more than merely
physically conveying a message.
10:06
It is about getting the message
heard and respected.
10:10
Still, things were going well.
10:14
My body was slowly getting stronger.
10:17
I had a job in computing that I loved,
10:19
and had even got Kojak, the dog
I had been dreaming about for years.
10:22
However, I longed to share
my life with someone.
10:27
I remember staring out the window
as my dad drove me home from work,
10:31
thinking I have so much love inside of me
and nobody to give it to.
10:35
Just as I had resigned myself
to being single for the rest of my life,
10:40
I met Joan.
10:44
Not only is she the best thing
that has ever happened to me,
10:46
but Joan helped me to challenge
my own misconceptions about myself.
10:50
Joan said it was through my words
that she fell in love with me.
10:55
However, after all I had been through,
10:59
I still couldn't shake the belief
11:02
that nobody could truly see
beyond my disability
11:04
and accept me for who I am.
11:07
I also really struggled
to comprehend that I was a man.
11:10
The first time someone
referred to me as a man,
11:14
it stopped me in my tracks.
11:17
I felt like looking around
and asking, "Who, me?"
11:19
That all changed with Joan.
11:24
We have an amazing connection
11:26
and I learned how important it is
to communicate openly and honestly.
11:27
I felt safe, and it gave me the confidence
to truly say what I thought.
11:32
I started to feel whole again,
a man worthy of love.
11:37
I began to reshape my destiny.
11:41
I spoke up a little more at work.
11:44
I asserted my need for independence
to the people around me.
11:46
Being given a means of communication
changed everything.
11:50
I used the power of words and will
to challenge the preconceptions
11:54
of those around me
and those I had of myself.
11:59
Communication is what makes us human,
12:02
enabling us to connect
on the deepest level
12:05
with those around us --
12:07
telling our own stories,
12:09
expressing wants, needs and desires,
12:11
or hearing those of others
by really listening.
12:14
All this is how the world
knows who we are.
12:18
So who are we without it?
12:21
True communication increases understanding
12:24
and creates a more caring
and compassionate world.
12:27
Once, I was perceived
to be an inanimate object,
12:31
a mindless phantom
of a boy in a wheelchair.
12:34
Today, I am so much more.
12:38
A husband, a son, a friend,
12:40
a brother, a business owner,
a first-class honors graduate,
12:42
a keen amateur photographer.
12:47
It is my ability to communicate
that has given me all this.
12:49
We are told that actions
speak louder than words.
12:54
But I wonder,
12:58
do they?
13:00
Our words, however we communicate them,
13:02
are just as powerful.
13:05
Whether we speak the words
with our own voices,
13:07
type them with our eyes,
13:10
or communicate them non-verbally
to someone who speaks them for us,
13:11
words are among our most powerful tools.
13:16
I have come to you through
a terrible darkness,
13:20
pulled from it by caring souls
13:23
and by language itself.
13:25
The act of you listening to me today
brings me farther into the light.
13:27
We are shining here together.
13:31
If there is one most difficult obstacle
to my way of communicating,
13:34
it is that sometimes I want to shout
13:38
and other times simply to whisper
a word of love or gratitude.
13:40
It all sounds the same.
13:44
But if you will,
13:46
please imagine these next two words
as warmly as you can:
13:48
Thank you.
13:54
(Applause)
13:56

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About the Speaker:

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.

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 speaker
Martin Pistorius | Speaker | TED.com