How my mind came back to life — and no one knew | Martin Pistorius | TEDxKC
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0:19 - 0:24Imagine being unable to say,
"I am hungry", "I am in pain" -
0:24 - 0:27"Thank you", or "I love you."
-
0:27 - 0:29Being trapped inside your body,
-
0:29 - 0:32a body that doesn't respond to commands.
-
0:32 - 0:34Surrounded by people,
-
0:34 - 0:35yet utterly alone.
-
0:35 - 0:37Wishing you could reach out,
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0:37 - 0:41to connect, to comfort, to participate.
-
0:41 - 0:44For 13 long years, that was my reality.
-
0:46 - 0:49Most of us never think twice
about talking, about communicating. -
0:51 - 0:53I thought a lot about it,
-
0:53 - 0:56I've had a lot of time to think.
-
0:56 - 0:58For the first 12 years of my life,
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0:58 - 1:01I was a normal, happy, healthy little boy.
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1:01 - 1:03Then everything changed.
-
1:03 - 1:05I contracted a brain infection.
-
1:05 - 1:07The doctors weren't sure what it was,
-
1:08 - 1:10but they treated me the best they could.
-
1:10 - 1:13However, I progressively got worse.
-
1:13 - 1:17Eventually, I lost my ability
to control my movements, -
1:18 - 1:19make eye contact,
-
1:19 - 1:22and finally, my ability to speak.
-
1:23 - 1:24While in hospital,
-
1:25 - 1:27I desperately wanted to go home.
-
1:27 - 1:30I said to my mother, "When home?"
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1:30 - 1:33Those were the last words
I ever spoke with my own voice. -
1:35 - 1:38I would eventually fail every test
for mental awareness. -
1:39 - 1:42My parents were told
I was as good as not there. -
1:42 - 1:45A vegetable, having the intelligence
of a three-month-old baby. -
1:46 - 1:50They were told to take me home
and try to keep me comfortable -
1:50 - 1:51until I died.
-
1:52 - 1:55My parents, in fact
my entire family's lives, -
1:56 - 1:59became consumed by taking care of me
the best they knew how. -
2:00 - 2:02Their friends drifted away.
-
2:02 - 2:04One year turned to two,
-
2:04 - 2:05two turned to three.
-
2:06 - 2:09It seemed like the person I once was
began to disappear. -
2:11 - 2:14The Lego blocks and electronic circuits
I'd loved as a boy were put away. -
2:16 - 2:19I had been moved out of my bedroom
into another more practical one. -
2:20 - 2:22I had become a ghost,
-
2:22 - 2:25a faded memory of a boy
people once knew and loved. -
2:26 - 2:29Meanwhile, my mind began
knitting itself back together. -
2:30 - 2:33Gradually, my awareness started to return.
-
2:34 - 2:37But no one realized
that I had come back to life. -
2:37 - 2:39I was aware of everything,
-
2:39 - 2:41just like any normal person.
-
2:41 - 2:43I could see and understand everything,
-
2:43 - 2:46but I couldn't find a way
to let anybody know. -
2:47 - 2:50My personality was entombed
within a seemingly silent body, -
2:51 - 2:54a vibrant mind hidden in plain sight
within a chrysalis. -
2:55 - 2:58The stark reality hit me
that I was going to spend -
2:58 - 3:00the rest of my life locked inside myself,
-
3:00 - 3:02totally alone.
-
3:02 - 3:05I was trapped with only
my thoughts for company. -
3:06 - 3:08I would never be rescued.
-
3:08 - 3:11No one would ever show me tenderness.
-
3:11 - 3:13I would never talk to a friend.
-
3:13 - 3:15No one would ever love me.
-
3:16 - 3:19I had no dreams, no hope,
nothing to look forward to. -
3:20 - 3:23Well, nothing pleasant.
-
3:23 - 3:24I lived in fear,
-
3:24 - 3:25and, to put it bluntly,
-
3:26 - 3:29was waiting for death
to finally release me, -
3:29 - 3:32expecting to die all alone in a care home.
-
3:33 - 3:36I don't know if it's truly possible
to express in words -
3:36 - 3:39what it's like not to be able
to communicate. -
3:39 - 3:42Your personality appears
to vanish into a heavy fog -
3:42 - 3:47and all of your emotions and desires are
constricted, stifled and muted within you. -
3:48 - 3:51For me, the worst was the feeling
of utter powerlessness. -
3:53 - 3:54I simply existed.
-
3:55 - 3:57It's a very dark place to find yourself
-
3:57 - 4:00because in a sense, you have vanished.
-
4:01 - 4:04Other people controlled
every aspect of my life. -
4:04 - 4:07They decided what I ate and when.
-
4:07 - 4:10Whether I was laid on my side
or strapped into my wheelchair. -
4:11 - 4:14I often spent my days
positioned in front of the TV -
4:14 - 4:16watching Barney reruns.
-
4:16 - 4:19I think because Barney
is so happy and jolly, -
4:19 - 4:21and I absolutely wasn't,
-
4:21 - 4:23it made it so much worse.
-
4:24 - 4:27I was completely powerless
to change anything in my life -
4:27 - 4:30or people's perceptions of me.
-
4:30 - 4:33I was a silent, invisible observer
of how people behaved -
4:33 - 4:36when they thought no one was watching.
-
4:36 - 4:39Unfortunately, I wasn't only an observer.
-
4:39 - 4:42With no way to communicate,
I became the perfect victim: -
4:43 - 4:46A defenseless object,
seemingly devoid of feelings -
4:47 - 4:50that people used
to play out their darkest desires. -
4:51 - 4:54For more than 10 years,
people who were charged with my care -
4:55 - 4:58abused me physically,
verbally and sexually. -
4:59 - 5:02Despite what they thought, I did feel.
-
5:02 - 5:04The first time it happened,
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5:04 - 5:07I was shocked and filled with disbelief.
-
5:07 - 5:08How could they do this to me?
-
5:09 - 5:11I was confused.
-
5:11 - 5:13What had I done to deserve this?
-
5:13 - 5:17Part of me wanted to cry
and another part wanted to fight. -
5:18 - 5:21Hurt, sadness and anger
flooded through me. -
5:21 - 5:23I felt worthless.
-
5:23 - 5:25There was no one to comfort me.
-
5:26 - 5:29But neither of my parents
knew this was happening. -
5:29 - 5:33I lived in terror, knowing
it would happen again and again. -
5:33 - 5:36I just never knew when.
-
5:36 - 5:38All I knew was that I would
never be the same. -
5:39 - 5:42I remember once listening
to Whitney Houston singing, -
5:43 - 5:47"No matter what they take from me,
they can't take away my dignity." -
5:48 - 5:51And I thought to myself,
"You want to bet?" -
5:53 - 5:56Perhaps my parents could have
found out and could have helped. -
5:57 - 5:59But the years of constant caretaking,
-
5:59 - 6:02having to wake up
every two hours to turn me, -
6:02 - 6:05combined with them essentially
grieving the loss of their son, -
6:05 - 6:08had taken a toll on my mother and father.
-
6:09 - 6:12Following yet another heated argument
between my parents, -
6:12 - 6:15in a moment of despair and desperation,
-
6:15 - 6:18my mother turned to me
and told me that I should die. -
6:20 - 6:23I was shocked, but as I thought
about what she had said, -
6:23 - 6:26I was filled with enormous compassion
and love for my mother, -
6:27 - 6:29yet I could do nothing about it.
-
6:31 - 6:33There were many moments when I gave up,
-
6:33 - 6:35sinking into a dark abyss.
-
6:35 - 6:38I remember one particularly low moment.
-
6:39 - 6:41My dad left me alone in the car
-
6:41 - 6:44while he quickly went
to buy something from the store. -
6:44 - 6:47A random stranger walked past,
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6:47 - 6:50looked at me and he smiled.
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6:51 - 6:54I may never know why, but that simple act,
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6:54 - 6:56the fleeting moment of human connection,
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6:56 - 6:59transformed how I was feeling,
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6:59 - 7:01making me want to keep going.
-
7:02 - 7:05My existence was tortured by monotony,
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7:05 - 7:08a reality that was often too much to bare.
-
7:08 - 7:12Alone with my thoughts,
I constructed intricate fantasies -
7:12 - 7:15about ants running across the floor.
-
7:15 - 7:20I taught myself to tell the time
by noticing where the shadows were. -
7:20 - 7:24As I learned how the shadows moved
as the hours of the day passed, -
7:25 - 7:29I understood how long it would be
before I was picked up and taken home. -
7:29 - 7:32Seeing my father walk
through the door to collect me -
7:33 - 7:35was the best moment of the day.
-
7:36 - 7:38My mind became a tool that I could use
-
7:38 - 7:41to either close down
to retreat from my reality -
7:41 - 7:45or enlarge into a gigantic space
that I could fill with fantasies. -
7:46 - 7:48I hoped that my reality would change
-
7:48 - 7:51and someone would see
that I had come back to life. -
7:51 - 7:53But I had been washed away
like a sand castle -
7:53 - 7:56built too close to the waves,
-
7:56 - 7:59and in my place was the person
people expected me to be. -
8:00 - 8:03To some I was Martin,
the vacant shell, the vegetable, -
8:04 - 8:07deserving of harsh words,
dismissal, and even abuse. -
8:08 - 8:11To others, I was the tragically
brain-damaged boy -
8:11 - 8:13who had grown to become a man.
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8:13 - 8:16Someone they were kind to and cared for.
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8:16 - 8:19Good or bad, I was a blank canvass
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8:19 - 8:22onto which different versions
of myself were projected. -
8:23 - 8:26It took someone new
to see me in a different way. -
8:26 - 8:29An aromatherapist began coming
to the care home about once a week. -
8:31 - 8:34Whether through intuition
or her attention to details -
8:34 - 8:36that others failed to notice,
-
8:36 - 8:39she became convinced that I could
understand what was being said. -
8:40 - 8:43She urged my parents
to have me tested by experts -
8:43 - 8:46in augmentative
and alternative communication. -
8:47 - 8:48And within a year,
-
8:48 - 8:51I was beginning to use
a computer program to communicate. -
8:52 - 8:55It was exhilarating,
but frustrating at times. -
8:56 - 8:58I had so many words in my mind,
-
8:58 - 9:01that I couldn't wait
to be able to share them. -
9:01 - 9:04Sometimes, I would say things to myself
simply because I could. -
9:05 - 9:08In myself, I had already an audience,
-
9:08 - 9:11and I believed that by expressing
my thoughts and wishes, -
9:11 - 9:13others would listen, too.
-
9:13 - 9:15But as I began to communicate more,
-
9:15 - 9:18I realized that it was in fact
only just the beginning -
9:18 - 9:21of creating a new voice for myself.
-
9:21 - 9:25I was thrust into a world
I didn't quite know how to function in. -
9:26 - 9:27I stopped going to the care home
-
9:28 - 9:31and managed to get my first job
making photocopies. -
9:31 - 9:34As simple as this may sound,
it was amazing. -
9:35 - 9:37My new world was really exciting,
-
9:37 - 9:40but often quite overwhelming
and frightening. -
9:40 - 9:42I was like a man-child,
-
9:42 - 9:44and as liberating as it often was,
-
9:44 - 9:45I struggled.
-
9:45 - 9:49I also learned that many of those
who had known me for a long time -
9:49 - 9:53found it impossible to abandon the idea
of Martin they had in their heads. -
9:54 - 9:55While those I had only just met
-
9:55 - 9:59struggled to look past the image
of a silent man in a wheelchair. -
10:00 - 10:03I realized that some people
would only listen to me -
10:03 - 10:06if what I said was in line
with what they expected. -
10:06 - 10:08Otherwise, it was disregarded
-
10:08 - 10:10and they did what they felt was best.
-
10:11 - 10:13I discovered that true communication
-
10:13 - 10:16is about more than merely
physically conveying a message. -
10:16 - 10:19It is about getting the message
heard and respected. -
10:21 - 10:23Still, things were going well.
-
10:23 - 10:26My body was slowly getting stronger.
-
10:26 - 10:28I had a job in computing that I loved,
-
10:28 - 10:32and had even got Kojak, the dog
I had been dreaming about for years. -
10:33 - 10:36However, I longed to share
my life with someone. -
10:37 - 10:41I remember staring out the window
as my dad drove me home from work, -
10:42 - 10:45thinking I have so much love inside of me
and nobody to give it to. -
10:46 - 10:50Just as I had resigned myself
to being single for the rest of my life, -
10:51 - 10:53I met Joan.
-
10:53 - 10:56Not only is she the best thing
that has ever happened to me, -
10:56 - 11:00but Joan helped me to challenge
my own misconceptions about myself. -
11:01 - 11:05Joan said it was through my words
that she fell in love with me. -
11:06 - 11:08However, after all I had been through,
-
11:08 - 11:10I still couldn't shake the belief
-
11:10 - 11:13that nobody could truly see
beyond my disability -
11:13 - 11:16and accept me for who I am.
-
11:16 - 11:19I also really struggled
to comprehend that I was a man. -
11:20 - 11:23The first time someone
referred to me as a man, -
11:23 - 11:25it stopped me in my tracks.
-
11:25 - 11:28I felt like looking around
and asking, "Who, me?" -
11:30 - 11:32That all changed with Joan.
-
11:32 - 11:34We have an amazing connection
-
11:34 - 11:38and I learned how important it is
to communicate openly and honestly. -
11:39 - 11:43I felt safe and it gave me the confidence
to truly say what I thought. -
11:44 - 11:47I started to feel whole again,
a man worthy of love. -
11:48 - 11:50I began to reshape my destiny.
-
11:50 - 11:53I spoke up a little more at work.
-
11:53 - 11:56I asserted my need for independence
to the people around me. -
11:57 - 12:00Being given a means of communication
changed everything. -
12:01 - 12:05I used the power of words and will
to challenge the preconceptions -
12:05 - 12:08of those around me
and those I had of myself. -
12:09 - 12:11Communication is what makes us human,
-
12:11 - 12:14enabling us to connect
on the deepest level -
12:14 - 12:16with those around us:
-
12:16 - 12:17Telling our own stories,
-
12:17 - 12:20expressing wants, needs and desires,
-
12:21 - 12:24or hearing those of others
by really listening. -
12:24 - 12:27All this is how the world
knows who we are. -
12:27 - 12:29So who are we without it?
-
12:30 - 12:33True communication increases understanding
-
12:34 - 12:37and creates a more caring
and compassionate world. -
12:38 - 12:41Once, I was perceived
to be an inanimate object, -
12:41 - 12:44a mindless phantom
of a boy in a wheelchair. -
12:44 - 12:46Today, I am so much more.
-
12:47 - 12:49A husband, a son, a friend,
-
12:49 - 12:53a brother, a business owner,
a first-class honors graduate, -
12:53 - 12:56a keen amateur photographer.
-
12:56 - 12:59It is my ability to communicate
that has given me all this. -
13:00 - 13:03We are told that actions
speak louder than words. -
13:04 - 13:06But I wonder,
-
13:06 - 13:07do they?
-
13:09 - 13:12Our words, however we communicate them,
-
13:12 - 13:14are just as powerful.
-
13:14 - 13:16Whether we speak the words
with our own voices, -
13:16 - 13:18type them with our eyes,
-
13:18 - 13:22or communicate them non-verbally
to someone who speaks them for us, -
13:22 - 13:25words are among our most powerful tools.
-
13:26 - 13:29I have come to you through
a terrible darkness, -
13:29 - 13:31pulled from it by caring souls
-
13:31 - 13:34and by language itself.
-
13:34 - 13:37The act of you listening to me today
brings me farther into the light. -
13:38 - 13:40We are shining here together.
-
13:40 - 13:44If there is one most difficult obstacle
to my way of communicating, -
13:44 - 13:46it is that sometimes I want to shout
-
13:46 - 13:49and other times, to simply whisper
a word of love or gratitude. -
13:51 - 13:53It all sounds the same.
-
13:53 - 13:54But if you will,
-
13:54 - 13:57please imagine these next two words
as warmly as you can: -
14:00 - 14:02Thank you.
-
14:03 - 14:06(Applause)
- Title:
- How my mind came back to life — and no one knew | Martin Pistorius | TEDxKC
- Description:
-
Trapped inside of his own body for a decade and thought to be severely brain-damaged, Martin Pistorius was actually fully aware the entire time. His story is one marked by abuse, neglect, love and despair. An expert on what people do when they think no one is looking, Martin has become well versed on human nature and self-determination.
Martin Pistorius is the author of the New York Times best-selling book "Ghost Boy: The Miraculous Escape of a Misdiagnosed Boy Trapped Inside His Own Body."
This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at http://ted.com/tedx
- Video Language:
- English
- Team:
closed TED
- Project:
- TEDxTalks
- Duration:
- 14:32
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TED Translators admin edited English subtitles for How my mind came back to life — and no one knew | Martin Pistorius | TEDxKC | |
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TED Translators admin edited English subtitles for How my mind came back to life — and no one knew | Martin Pistorius | TEDxKC | |
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TED Translators admin edited English subtitles for How my mind came back to life — and no one knew | Martin Pistorius | TEDxKC |