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