How My Mind Came Back to Life — and No One Knew | Martin Pistorius | TED Talks

349,642 views

2015-10-23 ・ TED


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How My Mind Came Back to Life — and No One Knew | Martin Pistorius | TED Talks

349,642 views ・ 2015-10-23

TED


Please double-click on the English subtitles below to play the video.

00:12
Imagine being unable to say, "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.
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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,
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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.
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I would eventually fail every test for mental awareness.
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My parents were told I was as good as not there.
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A vegetable, having the intelligence of a three-month-old baby.
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They were told to take me home 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,
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became consumed by taking care of me 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.
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The Lego blocks and electronic circuits 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.
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I had become a ghost,
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a faded memory of a boy people once knew and loved.
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Meanwhile, my mind began 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.
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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.
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My personality was entombed within a seemingly silent body,
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a vibrant mind hidden in plain sight within a chrysalis.
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The stark reality hit me 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.
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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.
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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,
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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
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what it's like not to be able to communicate.
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Your personality appears to vanish into a heavy fog
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and all of your emotions and desires are constricted, stifled and muted within you.
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For me, the worst was the feeling 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.
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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.
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I often spent my days 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,
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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
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or people's perceptions of me.
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I was a silent, invisible observer 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:
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a defenseless object, seemingly devoid of feelings
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that people used to play out their darkest desires.
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For more than 10 years, people who were charged with my care
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abused me physically, 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.
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Hurt, sadness and anger 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.
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I lived in terror, knowing 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.
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I remember once listening to Whitney Houston singing,
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"No matter what they take from me, they can't take away my dignity."
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And I thought to myself, "You want to bet?"
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Perhaps my parents could have 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,
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combined with them essentially 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,
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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.
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I was shocked, but as I thought about what she had said,
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I was filled with enormous compassion 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.
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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
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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.
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As I learned how the shadows moved 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.
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Seeing my father walk 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
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or enlarge into a gigantic space 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.
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But I had been washed away 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.
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To some I was Martin, a vacant shell, the vegetable,
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deserving of harsh words, dismissal and even abuse.
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To others, I was the tragically 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.
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It took someone new to see me in a different way.
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An aromatherapist began coming to the care home about once a week.
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Whether through intuition 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.
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She urged my parents to have me tested by experts
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in augmentative 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.
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It was exhilarating, 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.
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Sometimes, I would say things to myself 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,
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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
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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.
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I stopped going to the care home
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and managed to get my first job making photocopies.
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As simple as this may sound, it was amazing.
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My new world was really exciting
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but often quite overwhelming 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
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found it impossible to abandon the idea 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.
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I realized that some people would only listen to me
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if what I said was in line 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.
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It is about getting the message 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.
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However, I longed to share my life with someone.
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I remember staring out the window 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.
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Just as I had resigned myself 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,
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but Joan helped me to challenge my own misconceptions about myself.
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Joan said it was through my words 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
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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.
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The first time someone 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?"
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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.
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I felt safe, and it gave me the confidence to truly say what I thought.
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I started to feel whole again, 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.
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Being given a means of communication changed everything.
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I used the power of words and will to challenge the preconceptions
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of those around me 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
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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.
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All this is how the world 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.
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Once, I was perceived to be an inanimate object,
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a mindless phantom 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,
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a keen amateur photographer.
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It is my ability to communicate that has given me all this.
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We are told that actions 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,
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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,
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words are among our most powerful tools.
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I have come to you through 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.
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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,
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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.
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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:
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Thank you.
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(Applause)
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