生命不完美，奮斗才精彩

The doctor cleared his throat. “I’m sorry， but I have bad news.”

That’s when Pat began to cry. Her baby was a year old， and he hadn’t started crawling yet.

“Your son has a 1）neuromuscular disorder called 2）Spinal Muscular Atrophy，” the doctor said.

“What’s going to happen to him？” she managed to say.

“Where most children grow stronger as they get older， your son is going to get weaker. He’ll lose the ability to move. He’ll lose the ability to breathe on his own. And one day， he’ll catch an infection that will spread into his 3）respiratory system， giving him severe pneumonia…”

She held up her hand to stop him. “You’re saying he is going to die？”

He nodded. “There are three types of SMA. Caught this early， your son almost certainly has Type I. Most children with Type I die of pneumonia before the age of two.” He paused. “I’m sorry.”

Pat looked up into his face and saw that he really was sorry. It made her angry. Not because of his pity， but because in this man’s eyes， her baby was already dead.

“Don’t be sorry，” Pat said， wiping tears away from her face. Her voice was suddenly very calm.”He isn’t going to die.”

“It’s important you understand the situation， Mrs. Morrow. The pneumonia…h(huán)e won’t be able to fight it.”

“He won’t have to，” she said. “I’ll fight it for him.”

Over the next 16 years， I had pneumonia 16 times. But I never died. It sounds strange to say it， but my mother wouldn’t let it happen.

She 4）orchestrated a team of more than a dozen doctors. She slept in a chair beside me in the hospital， sometimes for as many as 30 days in a row. She pounded my chest and back every two hours to loosen the 5）mucus， covering my chest and back with bruises.

Today， at 27 years old， I’m one of the oldest people in the world with my type of SMA， and people tell me it’s a miracle. And I agree， it is. But the miracle isn’t just me. It’s a mother who fought like only a mother can to keep me alive.

By “alive，” I don’t mean just “not dead，” either. You’d think my mother would have been satisfied for me to live at home， tucked away from the world where she could protect me， but for her， that wasn’t living. She insisted that I be great.

When my elementary school principal decided that disabled children didn’t have a place in her school， my mom appealed to the school board and turned every board member’s life into a living hell for two years.

She won.

When I could no longer pick up a pencil， she arranged for honors students at local colleges to help me with my homework after school. I graduated at the age of 16， not only near the top of my class， but with college credit.

If you’re a mother， none of these things surprise you. Some mothers are weak， sure， but the vast majority fight for their children， especially when those children are 6）defenseless. It’s not because they’re trying to be heroes. It’s because that’s their job.

Growing up， I always had to fight to get people to listen to me.

The worst part about being disabled isn’t the pain or the struggle but how the world tries to shove you into a corner and pretend that you don’t exist. After all， what could you possibly have to contribute？ You’re going to die soon， poor thing.

They don’t 7）proactively hold you back， no， but they don’t expect you to succeed either. I’ve spent my entire life fighting against the weight of those expectations.

Like when university professors were 8）flabbergasted when， on the first day， I asked my attendant to raise his hand， so I could answer the question that no one else could.

Or the vaguely 9）constipated look on the face of a venture capitalist when I asked for $500，000 of startup capital for my first software company.

Their disbelief has never stopped me， of course. It’s not a matter of persistence or strength or attitude， as some people think. It’s a matter of shame.

How could I possibly look my mother and father and all of the others who have sacrificed so much for me in the eye and tell them， “I can’t？” I couldn’t bear it. The shame of dishonoring their sacrifice by giving up would poison my soul.

If my mother could ignore a doctor who would condemn me to death， then I can ignore my inner demons who tell me I’ll never make it as a writer.

If my mother could demand that I achieve straight As in school， then I can demand greatness from every blog post I publish.

If my mother could 10）lobby school administrators and government agencies to get me the help I needed， then I can lobby bloggers and social media power users to get my idea the attention it deserves.

If you want to succeed， you can’t wait for the world to give you attention the way a 11）cripple waits for food stamps to arrive in the mail. You have to be a warrior. You have to attack with the madness of a mother whose child is surrounded by an army of 12）predators.

You can’t just write them down and expect them to succeed. Writing isn’t about putting words on the page， any more than being a parent is about the act of 13）conception. It’s about breathing life into something and then working to make sure that life becomes something beautiful.

That means spending ten hours on a post， instead of 30 minutes.

That means writing a guest post every week， instead of one every few months.

That means asking for links without any shame or reservation， not because you lack humility， but because you know down to the depths of your soul that what you’ve done is good.

You have to realize that your blog is more than just a collection of ones and zeros floating through cyberspace. It’s more than the words on the page. Your blog is a 14）launch pad for your ideas， and you are the rocket fuel that lifts them off the ground.

So burn it up， baby.

醫(yī)生清了清喉嚨?！昂鼙福矣袀€壞消息。”

就是在這時，帕特開始哭了。她的寶寶只有一歲，還沒開始學(xué)會爬呢。

“你的兒子患上了一種叫‘脊髓性肌肉萎縮癥’的神經(jīng)肌肉失調(diào)病?！贬t(yī)生說道。

“那他會出現(xiàn)什么情況？”她終于說出話來。

“普通孩子是越長越壯，而你兒子的身體卻會越來越弱。他會失去活動能力，失去自我呼吸的能力。有一天，他的呼吸系統(tǒng)會受到感染，發(fā)展成嚴(yán)重肺炎……”

她舉起手打斷他的話?！澳闶钦f他會死？”

他點點頭?！癝MA有三種類型。因為發(fā)現(xiàn)得早，你的兒子基本可以肯定是I型。大部分患有I型的兒童在兩歲前會因為肺炎而死亡?！彼ｎD了一下?！拔液鼙??！?/p>

帕特抬頭盯著他的臉，看到他真的很抱歉。這讓她很生氣。不是因為他的憐憫，而是在這個男人的眼中，她的孩子已經(jīng)死去了。

“別道歉，”帕特邊說，邊從她的臉上擦去淚水。她的聲音突然變得很平靜?！八粫赖??！?/p>

“你要明白那種情況，這很重要，莫羅太太。這種肺炎……他扛不過來的?！?/p>

“他沒必要這么做，”她說。“我會替他扛?！?/p>

隨后的16年里，我患過16次肺炎。但我一直都沒死。我媽媽就是沒讓我死掉，這么說好像挺奇怪的。

她組織了一支超過十二名醫(yī)生的團(tuán)隊。她在醫(yī)院里睡，就睡在我旁邊的一張椅子上，有時連續(xù)多達(dá)30天。她每兩個小時就給我捶胸捶背，拍松積痰，我的胸背上已是瘀痕滿布。

如今，我27歲了，是世界上患有我這種類型SMA的人群中年紀(jì)最大的人之一，人們都說我是個奇跡。我同意，這確是奇跡。但這個奇跡并不只屬于我。這是一位母親的奇跡，她去抗?fàn)帲缤挥心赣H才能做到的那樣，讓我活著。

“活著”，我也不僅僅指“沒有死”而已。你會覺得，只要我能遠(yuǎn)離外界，在媽媽能保護(hù)我的家中生活，她就已經(jīng)心滿意足了，但于她而言，這并非生活。她堅持我得出色地活著。

當(dāng)我的小學(xué)校長認(rèn)為殘障兒童不能在她的學(xué)校上學(xué)時，我媽媽就向校董會申訴，有兩年時間讓每個校董過得像夢魘一般。

她贏了。

當(dāng)我再也無法拿起一支鉛筆時，她安排當(dāng)?shù)卮髮W(xué)的榮譽生在課后輔導(dǎo)我的功課。我16歲就畢業(yè)了，不單近乎是班上最拔尖的學(xué)生，而且還獲得了大學(xué)學(xué)分。

如果你是一位母親，這種事并不會使你驚訝。當(dāng)然，有些母親太軟弱，但大部分的母親都會為自己的子女抗?fàn)帲貏e是當(dāng)她們的孩子是沒有防備能力的一群時。不是因為她們試圖要當(dāng)英雄，而是因為那是她們的責(zé)任。

成長路上，我總是要抗?fàn)幉拍茏屓藗兟犖艺f話。

殘障最不幸的地方不是痛楚或者掙扎，而是世界怎樣試圖將你推到一角，并且假裝你不存在。畢竟，你有可能作出什么貢獻(xiàn)呢？你已將不久于人世了，可憐的家伙。

他們沒有主動阻礙你，沒有，但他們也沒希望你能成功。我整個人生都在與那些沉重的希望作斗爭。

比方說，上大學(xué)的頭一天，我請我的助理舉起他的手，好讓我能回答其他人都回答不上的問題，當(dāng)時大學(xué)的教授們都驚呆了。

或者說，當(dāng)我為我的首家軟件公司向一位風(fēng)險資本家提出要50萬美元啟動資金時，他臉上露出一副曖昧、便秘似的表情。

當(dāng)然，他們的懷疑從沒讓我停步。這不是如某些人所想的，關(guān)乎恒心、力量或者態(tài)度。而是關(guān)乎恥辱。

我怎么可能看著我的父母以及所有為我作出了眾多犧牲的人的眼睛，然后跟他們說：“我不能”？我承受不了。放棄，然后讓他們的犧牲蒙羞？這份恥辱會毒害我的靈魂。

如果我媽媽可以無視一個判了我死刑的醫(yī)生，那么我可以無視我內(nèi)心那認(rèn)為我永遠(yuǎn)無法成為作家的魔鬼。

如果我媽媽能要求我在學(xué)業(yè)上拿到全A，那么我可以要求我發(fā)表的每篇博文都很優(yōu)秀。

如果我媽媽可以游說學(xué)校管理處和政府機(jī)構(gòu)為我取得我需要的幫助，那么我可以游說博客寫手和社交媒體用戶讓我的主張能獲得應(yīng)有的關(guān)注。

如果你想成功，你不能像個跛子等待失業(yè)糧票寄上門那般坐等全世界去關(guān)注你。你得當(dāng)一個戰(zhàn)士。你得以一位其子被一隊食肉獸包圍的母親那樣的瘋狂態(tài)度來發(fā)動攻擊。

你不能只是將你的想法寫下來，然后希望它們能成功。寫作是關(guān)乎將文字躍然紙上，更甚于母親孕育自己的孩子。這是關(guān)乎為某物注入生命，然后努力保證生命能成為某些美麗之物。

那意味著在一篇博文上要花上10小時，而不是30分鐘。

那意味著每周寫一篇訪客博文，而不是幾個月才寫一篇。

那意味著毫不羞愧或毫不保留地請求鏈接，那并非因為你缺乏廉恥之心，而是因為你發(fā)自內(nèi)心地知道自己的作品是杰作。

你得明白你的博客不止是浮現(xiàn)在電腦空間里的一堆1和0組成的代碼，不止是紙上的文字，而是你思想的發(fā)射臺，而你就是將其推離地面的火箭燃料。

所以點火吧，孩子。