死而复生的灿烂人生---读 ghost boy 有感

Martin Pistorius生在南非开菩顿, 12岁时生病14岁变成了植物人, 他父母用了2年时间到处求医, 最终得到的答复是没有希望, 只能在护理院度过余生. 他母亲曾因为他自杀过, 看过心理医生后她出去工作,将全部身心放在另外2个小孩身上, 对他基本不理, 他父亲则不肯放弃, 只要不出差, 他都晚上接他回家, 他父母为他吵了很多, 为此他母亲曾对他发泄: 去死吧.
马丁大概在16岁时开始有些意识, 19岁完全恢复智力. 因为他全瘫, 只有眼睛可以活动, 人人都把他当傻子, 护理院有的工作人员趁人不注意的时候打他骂他, 喂很烫的饭给他吃, 把他吐出来的再喂他吃, 还有人拿他当性工具发泄. 这一切他都明白却不能动不能反抗不能言语, 那种无奈根本不是任何人可以理解的. 他每天希望的就是: 如何死掉来逃避这些.
后来一位物理治疗师发现他能用眼睛跟踪她, 反复反复经过很长时间, 后来她告诉他父母,经过测试发现他"locked in syndrome" (锁在综合症), 从那以后, 他开始漫长的康复, 买了计算机, 因为他不能认字,他妈妈就和他一起用图案设计每个字, 他非常聪明, 不到一年时间就设计了整套计算机图案语言对讲系统, 后来他还补完高中课程, 读完了大学, 从兼职2份电脑维护和设计, 到做全职. 他还到世界各地到处演讲, 很多时候他父母陪, 有时短途的他自己去, 在去伦顿看女朋友的那次, 他坚持自己单飞11个小时, 因为不能说话不能动, 在伦顿机场同样遭遇白眼. 2009年他和女朋友结婚. 他由开菩顿移居伦顿. 他现在的职业是网络开发设计师和作家.

马丁在康复后头部和上肢尤其是右上肢恢复了部分功能, 这是现在的他:


生病时候的马丁:


长期被人当傻子, 被某些工作人员打骂嘲笑甚至性侵犯:


马丁的夫人是他妹妹的同学,  社工, 他们在网上相识, 很快热恋. 她对他最大的鼓励是要他做决定有自信. 他自己设计的定婚结婚介指都很独特, 求婚是在热气球上, 特喜欢他写的求婚信:
there are no words in any language that will ever truly capture what I feel for you, you came into my life and gave meaning to it. you flooded my otherwise gray world with vivid color, and I feel like I've known you forever. It's like time stops when we are together. you give my heart not just a reason to beat but to sing and rejoice. with every passing day my love for you gets stronger and deeper, richer and more profound because you are beautiful inside and out. and while life is not all milk and roses-and sometimes we eat a little salt too-what I do know is that I don't work without you, and I don't want to spend a moment of m life without you. you are my soul mate, my best friend, my companion, my lover, my rock and strength, my soft place to fall in this crazy world. and that is why I want to hold you, cherish you, take care of you, protect you and love you with everything I have. so will you do me the honor, the enormous privilege, of sharing the rest of my life with me and becoming my wife?



马丁在TED 上的演讲:


看看我们的大科学家爱因斯坛给他夫人写的婚姻规定, 与马丁相比, 谁可爱?

CONDITIONS

A. You will make sure:

1. that my clothes and laundry are kept in good order;
2. that I will receive my three meals regularly in my room;
3. that my bedroom and study are kept neat, and especially that my desk is left for my use only.

B. You will renounce all personal relations with me insofar as they are not completely necessary for social reasons. Specifically, You will forego:

1. my sitting at home with you;
2. my going out or travelling with you.

C. You will obey the following points in your relations with me:

1. you will not expect any intimacy from me, nor will you reproach me in any way;
2. you will stop talking to me if I request it;
3. you will leave my bedroom or study immediately without protest if I request it.

D. You will undertake not to belittle me in front of our children, either through words or behavior.