死而複生的燦爛人生---讀 ghost boy 有感

Martin Pistorius生在南非開菩頓, 12歲時生病14歲變成了植物人, 他父母用了2年時間到處求醫, 最終得到的答複是沒有希望, 隻能在護理院度過餘生. 他母親曾因為他自殺過, 看過心理醫生後她出去工作,將全部身心放在另外2個小孩身上, 對他基本不理, 他父親則不肯放棄, 隻要不出差, 他都晚上接他回家, 他父母為他吵了很多, 為此他母親曾對他發泄: 去死吧.
馬丁大概在16歲時開始有些意識, 19歲完全恢複智力. 因為他全癱, 隻有眼睛可以活動, 人人都把他當傻子, 護理院有的工作人員趁人不注意的時候打他罵他, 喂很燙的飯給他吃, 把他吐出來的再喂他吃, 還有人拿他當性工具發泄. 這一切他都明白卻不能動不能反抗不能言語, 那種無奈根本不是任何人可以理解的. 他每天希望的就是: 如何死掉來逃避這些.
後來一位物理治療師發現他能用眼睛跟蹤她, 反複反複經過很長時間, 後來她告訴他父母,經過測試發現他"locked in syndrome" (鎖在綜合症), 從那以後, 他開始漫長的康複, 買了計算機, 因為他不能認字,他媽媽就和他一起用圖案設計每個字, 他非常聰明, 不到一年時間就設計了整套計算機圖案語言對講係統, 後來他還補完高中課程, 讀完了大學, 從兼職2份電腦維護和設計, 到做全職. 他還到世界各地到處演講, 很多時候他父母陪, 有時短途的他自己去, 在去倫頓看女朋友的那次, 他堅持自己單飛11個小時, 因為不能說話不能動, 在倫頓機場同樣遭遇白眼. 2009年他和女朋友結婚. 他由開菩頓移居倫頓. 他現在的職業是網絡開發設計師和作家.

馬丁在康複後頭部和上肢尤其是右上肢恢複了部分功能, 這是現在的他:


生病時候的馬丁:


長期被人當傻子, 被某些工作人員打罵嘲笑甚至性侵犯:


馬丁的夫人是他妹妹的同學,  社工, 他們在網上相識, 很快熱戀. 她對他最大的鼓勵是要他做決定有自信. 他自己設計的定婚結婚介指都很獨特, 求婚是在熱氣球上, 特喜歡他寫的求婚信:
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?



馬丁在TED 上的演講:


看看我們的大科學家愛因斯壇給他夫人寫的婚姻規定, 與馬丁相比, 誰可愛?

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.