19岁成为植物人，沉睡4个月后苏醒：没人知道我是如何重生的

学术 2024-09-03 17:30 河北

hello大家好，2014年8月，一场意外让19岁的女孩美美成为植物人，在最美的年华陷入了漫长的沉睡。

植物人作为一个时常被遗忘的特殊群体，他们虽然活着，却如同行走在深海之中，周身被漫无边际的黑暗环绕，灵魂无处安放。

在悲痛中接受现实，妈妈陈淑芳问医生，救醒女儿的几率有多大，医生的回答犹如晴天霹雳——“零。”

但陈淑芳不愿放弃，每日醒来，给女儿洗脸、喂水、喂饭、输液、擦身……在渺茫的希望中等待一个奇迹。

终于，2015年1月1日，沉睡已久的美美醒了——她的身体终于对外界的声音有了微弱的回应。

如今，美美仍在学习和康复中，陈淑芳坦言——

“年纪大了，有点力不从心了。每次推美美出去回来，我要在沙发上坐好久才有力气去做别的事情。

有的时候一个简单的动作可以教她好几年……她膝盖和腿的力量总是练不出来，我有点不知道怎么办才好。

如果她能把腿的力量练出来，哪怕是拄着拐杖走路，我已经很满足了。不要求她健步如飞，能拄着拐杖就有希望。”

我们很难理解这样的经历，也许从下面这位演讲者的描述中，我们能更切身地体会他们的感受吧——

想象一下无法说出“我饿了”，“我很痛苦”，“谢谢”或“我爱你”——失去了交流的能力，被困在体内，被人完全包围仅仅13年，这就是马丁·皮斯托里乌斯（Martin Pistorius）的现实。

皮斯托里乌斯在十二岁的时候染上了脑部感染，失去了控制自己的动作和说话的能力，最终他在所有的智力意识测试中都失败了。

但随后发生了一件奇怪的事情-他的思想开始重新编织在一起，在这场动人的演讲中，皮斯托里乌斯讲述了他如何使自己摆脱了锁在自己体内的生活。

演讲者：Martin Pistorius

演讲题目：我的思想如何重生-没人知道

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.

想象一下，你不能说“我饿了”、“我很痛苦”、“谢谢你”或“我爱你”，被困在你的身体里，一个对命令没有反应的身体。周围都是人，却完全孤独。渴望旁人能伸出援手，联系，安慰，靠近。在漫长的13年里，这就是我的真实状况。

Most 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.

我们大多数人从不三思而后行谈论，交流。我想了很多。我有很多时间思考。

For 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.

在我生命的最初12年里，我是一个正常、快乐、健康的小男孩。然后一切都变了。我得了脑部感染。医生们不确定是什么病，但他们已经尽力治疗了我。然而，我的病情逐渐恶化。最后，我失去了控制我的动作，眼神交流的能力，最后，我失去了说话的能力。

While 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.

住院期间，我非常想回家。我对妈妈说：“什么时候回家？”这是我用自己的声音说的最后一句话。我最终会在每一次心理意识测试中失败。我的父母被告知我在那里是最好的。一种蔬菜，有三个月大婴儿的智力。他们告诉我带我回家，尽量让我舒服直到我死。

My 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.

我的父母，实际上是我全家，都在尽他们所能的照顾我。他们远离了亲朋好友。一年变成二年，二年变成三年。好像我曾经的那个人开始消失了。我小时候喜欢的乐高积木和电子线路被收起来了。我被从卧室搬到了另一间更实用的卧室。我变成了一个幽灵，一个人们曾经认识和爱过的男孩的褪色的记忆。

Meanwhile, 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.

与此同时，我的思想开始重新编织起来。渐渐地，我的意识开始恢复。但没人意识到我又活过来了。我对一切都了如指掌，就像普通人一样。我可以看到和理解一切，但我找不到办法让任何人知道。我的个性被藏在一个看似沉默的身体里，一个活力四射的心灵藏在一个蛹里。

The 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.

严酷的现实击中我，我将度过我的余生锁在自己，完全孤独。我被困在孤独的世界里。我永远不会被救。没有人会给我温柔。我无法跟朋友说话。没有人会爱我。我没有梦想，没有希望，没有什么可期待的。嗯，没什么好高兴的。我生活在恐惧中，坦率地说，我在等待死亡最终解救我，甚至期待独自一人死在疗养院里。

I 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.

我不知道是否真的可以用语言来表达无法交流的感觉。你的个性似乎消失在浓雾中，你所有的情绪和欲望都被压制在你内心深处，你却只能沉默。对我来说，最糟糕的是完全无力的感觉。我只是活着，仅此而已。

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.

这是一个非常黑暗的地方，因为在某种意义上，你已经消失了。其他人控制着我生活的方方面面。他们决定了我吃什么和什么时候吃。不管我是侧卧还是绑在轮椅上。我常常整天坐在电视机前看巴尼的重播。我想因为巴尼很快乐，而我绝对不是，这让事情变得更糟。

I 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.

我完全无力改变我生活中的任何事情，也无法改变人们对我的看法。我是一个沉默的，看不见的观察者，当人们认为没有人在看的时候，他们的行为。不幸的是，我不仅仅是一个观察者。由于无法沟通，我成了完美的牺牲品：一个毫无防备的物体，似乎没有人们用来表现他们最黑暗欲望的感觉。

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.

10多年来，负责照顾我的人对我进行生理和心理多重虐待。不管他们怎么想，我确实感觉到了。第一次发生的时候，我震惊了，充满了怀疑。他们怎么能这样对我？我很困惑。我做了什么才会遭此一劫？我想哭，又想爬起来打一架。伤害，悲伤和愤怒充斥着我。我觉得自己一文不值。

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?"

没有人安慰我。但我父母都不知道发生了这种事。我生活在恐惧中，知道这种事会一次又一次发生。我只是不知道什么时候。我只知道我永远不会是原来的我。我记得有一次听惠特尼·休斯顿唱歌，“不管他们从我身上夺走什么，他们都不能夺走我的尊严。”我心想，“你想打赌吗？”

Perhaps 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.

也许我的父母本可以发现并帮助我。但是这些年来，他们一直在照顾我，每两个小时就要醒来一次来照顾我，再加上他们基本上都在为失去儿子而悲痛，这让我的父母付出了沉重的代价。在我父母又一次激烈争吵之后，在绝望和绝望的时刻，我母亲转向我，跟我说宁愿我死掉。

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.

我很震惊，但当我想到她所说的话时，我对母亲充满了极大的同情和爱，然而我对此却无能为力。

There were many moments when I gave up, sinking into a dark abyss.

有很多时候我放弃了，陷入了黑暗的深渊。

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.

我记得一个特别低落的时刻。我爸爸把我一个人留在车里，他急忙去商店买东西。一个陌生人走过来，看着我，他笑了。我可能永远不知道为什么，但那简单的行为，短暂的人际关系瞬间，改变了我的感觉，让我想继续前进。

My 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.

我的生活被单调所折磨，这是一个常常难以忍受的现实。我独自思考着，对蚂蚁在地板上跑来跑去做了复杂的幻想。我教自己通过注意影子的位置来判断时间。当我了解到一天中的每一个小时影子是如何移动的时候，我明白了我需要多长时间才能被接回家。看到父亲进门来接我是一天中最美好的时刻。

My 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.

我的思想成了一个工具，我可以用它来隔离外界，从现实中撤退，或者扩大到一个巨大的空间，我可以充满幻想。我希望我的现实会改变，有人会看到我已经复活。但我像一座离海浪太近的沙堡一样被冲走了，在我的位置上是人们期望我成为的那个人。

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.

对某些人来说，我就是马丁，一个空壳，一个蔬菜，应该受到严厉的批评，解雇，甚至辱骂。对其他人来说，我是一个不幸的脑损伤男孩，已经长大成人。他们对他很好很关心的人。不管是好是坏，我只是一张空白的画布，上面投射着不同版本的我自己。

It 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.

我的生命里出现了一个新角色，他以全新的方式看待我。一位香薰师开始大约每周来疗养院一次。不管是通过直觉还是她对别人没有注意到的细节的关注，她都相信我能理解别人在说什么。她敦促我的父母让我接受增强型和另类交流专家的测试。

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.

不到一年，我就开始使用电脑程序进行交流。这是令人振奋的，但有时令人沮丧。我脑子里有那么多的话，我迫不及待地想和大家分享。有时候，我会对自己说一些简单的事情，因为我可以。在我自己身上，我有一个现成的听众，我相信通过表达我的想法和愿望，其他人也会倾听。

But 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.

但当我开始更多地交流时，我意识到这其实只是为自己创造新声音的开始。我被推进了一个我不太知道如何运作的世界。我不再去疗养院了，我的第一份工作是复印。

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.

这听起来很简单，但却令人惊叹。我的新世界真的很令人兴奋，但往往相当压倒性和可怕的。我就像一个男子汉，像往常一样自由，我挣扎着。我还了解到，许多认识我很长时间的人发现，他们不可能放弃心中对马丁的想法。

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.

而那些我刚刚遇到的人，却挣扎着从坐在轮椅上的沉默的人的形象中看过去。我意识到有些人只有在我说的符合他们期望的话时才会听我的。否则，他们就置之不理，做他们认为最好的事。

I 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.

我发现真正的交流不仅仅是通过身体传达信息。这是为了让人们听到并尊重这个信息。不过，一切都很顺利。我的身体慢慢变强壮了。我有一份我热爱的计算机工作，甚至还养了我多年梦寐以求的狗Kojak。

However, 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.

然而，我渴望与某人分享我的生活。我记得当爸爸开车送我下班回家的时候，我凝视着窗外，心想我内心有那么多的爱，没有人可以给予我。就在我决定终身单身的时候，我遇到了琼。她不仅是发生在我身上最美好的事情，而且琼还帮助我挑战自己对自己的误解。琼说她是通过我的话爱上我的。

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.

然而，在我经历了这么多之后，我仍然无法动摇这样一个信念：没有人能真正看到我的残疾，接受我是谁。

I 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.

我也很难理解我是个男人。第一次有人说我是男人的时候，我就被阻止了。我想四处看看，问：“谁，我？”琼改变了一切。

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.

我们有着惊人的联系，我明白了坦诚沟通的重要性。我觉得很安全，这让我有信心说出自己的想法。我又开始觉得自己完整了，一个值得爱的人。

I 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.

我开始重塑我的命运。我在工作中多说了一点。我向周围的人强调我需要独立。被给予一种交流的方式改变了一切。我用语言和意志的力量来挑战周围人和我自己的成见。

Communication 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?

沟通使我们成为人，使我们能够在最深层次上与周围的人建立联系——讲述自己的故事，表达自己的愿望、需要和愿望，或者通过真正的倾听来倾听他人的想法。全世界都知道我们是谁。没有它我们是谁？

True 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.

真正的交流能增进理解，创造一个更关心和富有同情心的世界。有一次，我被认为是一个无生命的物体，一个坐在轮椅上的男孩的无意识幻影。今天，我比以前好多了。一个丈夫，一个儿子，一个朋友，一个兄弟，一个企业主，一个一流的荣誉毕业生，一个热心的业余摄影师。是我的沟通能力给了我这一切。

We 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.

我们被告知行动胜于雄辩。但我想知道，是吗？我们的语言，无论我们如何传达，都同样强大。无论我们是用自己的声音说话，用眼睛打字，还是用非语言的方式与替我们说话的人交流，语言都是我们最有力的工具之一。

I 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.

我已经通过一个可怕的黑暗来到你们这里，被关心的灵魂和语言本身从黑暗中拉出来。你今天听我说话的行为把我带到了更远的光中。我们一起在这里闪耀。

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.

如果说在我的交流方式上有一个最困难的障碍，那就是有时我想大声喊叫，有时只是想低声说一句爱或感激的话。听起来都一样。

But if you will, please imagine these next two words as warmly as you can:

但如果你愿意，请尽可能热情地想象下面这两个词：

Thank you.

非常感谢。

Remark：一切权益归TED所有，更多TED相关信息可至官网www.ted.com查询！

http://mp.weixin.qq.com/s?__biz=MzAwODAxNTIwNA==&mid=2650874550&idx=2&sn=98fdc5d39119ffeb6f007a34e68f2c24

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