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

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.

 

Možná jste někdy zaslechli o syndromu "locked-in". Za specifických okolností (infekce) tímto stavem prošel Martin Pistorius. V jeho krátké a přesto hluboké osobní zpovědi na serveru www.ted.com získáte jasnější představu o tom, jak mysl za takovýchto okolností pracuje i jak pracují (či "pracují") lidé, kteří o člověka v takovémto stavu pečují (od zneužívání .... po účinky speciálních postupů tzv. augmentativní komunikace).

 

Pro zájemce je k dispozici transcript:

Imagine being unable to say, "I am hungry," "I am in pain," "thank you," or "I love you." Being trapped inside your body, a body that doesn't respond to commands. Surrounded by people, yet utterly alone.Wishing you could reach out, to connect, to comfort, to participate. For 13 long years, that was my reality.

00:38Most of us never think twice about talking, about communicating. I've thought a lot about it. I've had a lot of time to think.

00:48For the first 12 years of my life, I was a normal, happy, healthy little boy. Then everything changed. I contracted a brain infection. The doctors weren't sure what it was, but they treated me the best they could. However, I progressively got worse. Eventually, I lost my ability to control my movements, make eye contact, and finally, my ability to speak.

01:16While in hospital, I desperately wanted to go home. I said to my mother, "When home?" Those were the last words I ever spoke with my own voice. I would eventually fail every test for mental awareness. My parents were told I was as good as not there. A vegetable, having the intelligence of a three-month-old baby. They were told to take me home and try to keep me comfortable until I died.

01:45My parents, in fact my entire family's lives, became consumed by taking care of me the best they knew how. Their friends drifted away. One year turned to two, two turned to three. It seemed like the person I once was began to disappear. The Lego blocks and electronic circuits I'd loved as a boy were put away. I had been moved out of my bedroom into another more practical one. I had become a ghost, a faded memory of a boy people once knew and loved.

02:19Meanwhile, my mind began knitting itself back together. Gradually, my awareness started to return. But no one realized that I had come back to life. I was aware of everything, just like any normal person. I could see and understand everything, but I couldn't find a way to let anybody know. My personality was entombed within a seemingly silent body, a vibrant mind hidden in plain sight within a chrysalis.

02:47The stark reality hit me that I was going to spend the rest of my life locked inside myself, totally alone. I was trapped with only my thoughts for company. I would never be rescued. No one would ever show me tenderness. I would never talk to a friend. No one would ever love me. I had no dreams, no hope, nothing to look forward to. Well, nothing pleasant. I lived in fear, and, to put it bluntly, was waiting for death to finally release me, expecting to die all alone in a care home.

03:25I don't know if it's truly possible to express in words what it's like not to be able to communicate. Your personality appears to vanish into a heavy fog and all of your emotions and desires are constricted, stifled and muted within you. For me, the worst was the feeling of utter powerlessness. I simply existed.It's a very dark place to find yourself because in a sense, you have vanished. Other people controlled every aspect of my life. They decided what I ate and when. Whether I was laid on my side or strapped into my wheelchair. I often spent my days positioned in front of the TV watching Barney reruns. I think because Barney is so happy and jolly, and I absolutely wasn't, it made it so much worse.

04:16I was completely powerless to change anything in my life or people's perceptions of me. I was a silent, invisible observer of how people behaved when they thought no one was watching. Unfortunately, I wasn't only an observer. With no way to communicate, I became the perfect victim: a defenseless object, seemingly devoid of feelings that people used to play out their darkest desires. For more than 10 years, people who were charged with my care abused me physically, verbally and sexually. Despite what they thought, I did feel. The first time it happened, I was shocked and filled with disbelief. How could they do this to me? I was confused. What had I done to deserve this? Part of me wanted to cry and another part wanted to fight. Hurt, sadness and anger flooded through me. I felt worthless. There was no one to comfort me. But neither of my parents knew this was happening. I lived in terror, knowing it would happen again and again. I just never knew when. All I knew was that I would never be the same. I remember once listening to Whitney Houston singing, "No matter what they take from me, they can't take away my dignity." And I thought to myself, "You want to bet?"

05:46Perhaps my parents could have found out and could have helped. But the years of constant caretaking,having to wake up every two hours to turn me, combined with them essentially grieving the loss of their son, had taken a toll on my mother and father. Following yet another heated argument between my parents, in a moment of despair and desperation, my mother turned to me and told me that I should die. I was shocked, but as I thought about what she had said, I was filled with enormous compassion and love for my mother, yet I could do nothing about it.

06:23There were many moments when I gave up, sinking into a dark abyss. I remember one particularly low moment. My dad left me alone in the car while he quickly went to buy something from the store. A random stranger walked past, looked at me and he smiled. I may never know why, but that simple act,the fleeting moment of human connection, transformed how I was feeling, making me want to keep going.

06:54My existence was tortured by monotony, a reality that was often too much to bear. Alone with my thoughts, I constructed intricate fantasies about ants running across the floor. I taught myself to tell the time by noticing where the shadows were. As I learned how the shadows moved as the hours of the day passed, I understood how long it would be before I was picked up and taken home. Seeing my father walk through the door to collect me was the best moment of the day.

07:28My mind became a tool that I could use to either close down to retreat from my reality or enlarge into a gigantic space that I could fill with fantasies. I hoped that my reality would change and someone would see that I had come back to life. But I had been washed away like a sand castle built too close to the waves, and in my place was the person people expected me to be. To some I was Martin, a vacant shell, the vegetable, deserving of harsh words, dismissal and even abuse. To others, I was the tragically brain-damaged boy who had grown to become a man. Someone they were kind to and cared for. Good or bad, I was a blank canvas onto which different versions of myself were projected.

08:16It took someone new to see me in a different way. An aromatherapist began coming to the care home about once a week. Whether through intuition or her attention to details that others failed to notice, she became convinced that I could understand what was being said. She urged my parents to have me tested by experts in augmentative and alternative communication. And within a year, I was beginning to use a computer program to communicate. It was exhilarating, but frustrating at times. I had so many words in my mind, that I couldn't wait to be able to share them. Sometimes, I would say things to myself simply because I could. In myself, I had a ready audience, and I believed that by expressing my thoughts and wishes, others would listen, too.

09:06But as I began to communicate more, I realized that it was in fact only just the beginning of creating a new voice for myself. I was thrust into a world I didn't quite know how to function in. I stopped going to the care home and managed to get my first job making photocopies. As simple as this may sound, it was amazing. My new world was really exciting but often quite overwhelming and frightening. I was like a man-child, and as liberating as it often was, I struggled. I also learned that many of those who had known me for a long time found it impossible to abandon the idea of Martin they had in their heads. While those I had only just met struggled to look past the image of a silent man in a wheelchair. I realized that some people would only listen to me if what I said was in line with what they expected. Otherwise, it was disregarded and they did what they felt was best.

10:03I discovered that true communication is about more than merely physically conveying a message. It is about getting the message heard and respected. Still, things were going well. My body was slowly getting stronger. I had a job in computing that I loved, and had even got Kojak, the dog I had been dreaming about for years.

10:26However, I longed to share my life with someone. I remember staring out the window as my dad drove me home from work, thinking I have so much love inside of me and nobody to give it to. Just as I had resigned myself to being single for the rest of my life, I met Joan. Not only is she the best thing that has ever happened to me, but Joan helped me to challenge my own misconceptions about myself. Joan said it was through my words that she fell in love with me. However, after all I had been through, I still couldn't shake the belief that nobody could truly see beyond my disability and accept me for who I am.

11:09I also really struggled to comprehend that I was a man. The first time someone referred to me as a man, it stopped me in my tracks. I felt like looking around and asking, "Who, me?" That all changed with Joan.We have an amazing connection and I learned how important it is to communicate openly and honestly. I felt safe, and it gave me the confidence to truly say what I thought. I started to feel whole again, a man worthy of love.

11:40I began to reshape my destiny. I spoke up a little more at work. I asserted my need for independence to the people around me. Being given a means of communication changed everything. I used the power of words and will to challenge the preconceptions of those around me and those I had of myself.

12:01Communication is what makes us human, enabling us to connect on the deepest level with those around us -- telling our own stories, expressing wants, needs and desires, or hearing those of others by really listening. All this is how the world knows who we are. So who are we without it?

12:23True communication increases understanding and creates a more caring and compassionate world.Once, I was perceived to be an inanimate object, a mindless phantom of a boy in a wheelchair. Today, I am so much more. A husband, a son, a friend, a brother, a business owner, a first-class honors graduate,a keen amateur photographer. It is my ability to communicate that has given me all this.

12:53We are told that actions speak louder than words. But I wonder, do they? Our words, however we communicate them, are just as powerful. Whether we speak the words with our own voices, type them with our eyes, or communicate them non-verbally to someone who speaks them for us, words are among our most powerful tools.

13:19I have come to you through a terrible darkness, pulled from it by caring souls and by language itself. The act of you listening to me today brings me farther into the light. We are shining here together. If there is one most difficult obstacle to my way of communicating, it is that sometimes I want to shout and other times simply to whisper a word of love or gratitude. It all sounds the same. But if you will, please imagine these next two words as warmly as you can:

 

13:53Thank you.