哥哥曾是我痛苦的來源,但我依然愛他

When my brother Alan died suddenly at age 43, I received the usual condolences, plus a few unusual ones. One friend texted, “So glad this weight has been lifted from your shoulders.” Another simply hugged me and said, “I hope you finally have some peace.”

當我的哥哥艾倫43歲突然去世時，我收到了不少尋常的哀悼，也有幾個不尋常的。有一個朋友發信息說，“很高興你肩上的重擔終於卸下了。”另一個朋友只是抱了抱我，然後說，“我希望你終於能獲得一些平靜了。”

These friends assumed my brother’s death would bring some relief, that losing him at a young age might be a blessing in disguise.

這些朋友認爲我哥哥的去世會給我帶來一些解脫，認爲在他還年輕時失去他，是因禍得福。

On a deeper level, their messages sought to make sense of a loss that didn’t fall into any of the usual categories. Alan was not a typical brother, and ours was not a typical sibling relationship. My relationship with my brother was an ambivalent one — full of love, fear, empathy, embarrassment, gratitude and resentment. Because of this, the loss was somehow different, and perhaps easier, they surmised.

從更深層次上來說，他們的信息是試圖理解一種不符合常規死亡、痛失親人的情況。艾倫不是一個典型的哥哥，我們的關係也不是典型的手足關係。我與我哥哥的關係是矛盾的——充滿愛、恐懼、同情、尷尬、感激和怨恨。因爲這一點，他們便猜測失去他會有些不一樣，可能會容易一些。

My brother was a 5-year-old in a grown man’s body. He was born with a genetic abnormality that leads to cognitive delays, hyperphagia (insatiable hunger), slurred speech, and moods that veer unexpectedly from loving to violent.

我哥哥是個有着成年人軀體的五歲小孩。他生來就有遺傳異常，導致認知遲緩，暴飲暴食（極度飢餓）、講話含糊不清，心情會無法預料地從充滿愛意轉換到暴力。

It wasn’t until his 30s that this was diagnosed as Prader-Willi syndrome, an intellectual disability caused by a genetic error on chromosome 15. My mother suspected he had other issues as well. He was born breech, his umbilical cord wrapped around his neck. She thinks perhaps he suffered brain damage this way. He was a floppy baby, she said. He didn’t cry.

直到艾倫30多歲的時候，他才被診斷出普瑞德威利綜合徵(Prader-Willi syndrome)，這是一種由於第15號染色體基因缺陷引起的智力殘疾。我母親懷疑他還有其他問題。他是臀位分娩出來的，臍帶纏住了脖子。她覺得這可能導致他的腦部受到了損傷。她說，當時他整個人軟軟的，沒有哭。

Alan required constant supervision. Left alone, he would eat until he vomited. He’d eat food from the trash. He’d cut himself while trying to pry aluminum cans open with a steak knife. He started fires on the stove.

艾倫需要人一直看着。如果不管他，他會一直吃東西，吃到吐。他會吃垃圾裏的食物。他會因爲試圖用牛排刀撬開鋁罐而割傷自己。他會開爐火。

This meant that despite my being three years younger, I quickly surpassed him. I became the older sibling. The “normal” one. I was the one people pointed to as they consoled my mother. At least you have this perfect little girl.

這意味着儘管我比他小三歲，但我迅速超越了他。我反而成爲了姐姐，“正常”的那個。我是人們安慰我母親時所指的那個人。至少你有個完美的女兒。

Back in the 70s, having a disabled kid was a Disease, and I was the cure. Later, my parents had another typical child, my younger brother Andrew, but even that didn’t stop their grief. Dad moved out when I was 5.

在70年代，家裏有一個殘障兒童是一種病，而我就是解藥。後來，我父母又生了一個正常的孩子，我的弟弟安德魯，但即使是這樣，他們仍然一直處在悲痛中。父親在我五歲時搬出去了。

My mother never recovered. She suffered profound depression. From a very young age, I stepped in and helped parent Alan, which means I also bore the brunt of his violent outbursts. He never understood why his younger sister was left in charge of him. So, if I told him to brush his teeth or if I caught him bingeing on food, he would respond by punching me and slamming my head into a wall, or he’d grab my hair and drag me across the floor. Afterward, seeing me cowering and bleeding, he’d cry and apologize. He never meant to hurt me. His mind just didn’t know how to control his body.

我母親從未從打擊中恢復過來。她患有嚴重抑鬱症。我從很小的時候起，就幫忙承擔艾倫父母的角色，這意味着我還承受着他暴力爆發時的那些衝擊。他從來不能理解爲何他妹妹要來管他。因此，如果我讓他刷牙或是發現他暴飲暴食時，他的迴應是用拳頭捶打我、將我的頭撞到牆上，或是拽住我的頭髮將我在地板上拖來拖去。過後，看到我蜷縮在一邊流血，他會哭着道歉。他從沒有要傷害我的意思。他的大腦只是不知道該如何控制他的身體。

There were peaceful times too. When my mother was away, I’d tuck Alan into bed, kiss him on the forehead and listen to him talk about his favorite movies until he drifted to sleep. Whenever he’d meet someone new, he’d ask them their shoe size and phone number and commit it to memory. We often caught him calling new friends, sometimes in the middle of the night.

有時候也有平靜的時刻。當我母親不在時，我會送艾倫上牀睡覺，在額頭上親吻他，然後聽着他講他最喜歡的電影，直至他漸漸睡去。只要他認識了新的朋友，就會問他們的鞋碼和電話號碼，然後記在心裏。我們常常會發現他打電話給新朋友，有時候是在半夜。

He was also something of a dog whisperer. Watching him cradle a puppy, you’d never guess he was capable of hurting anyone. He might have made a career out of rescuing animals if he was able. This was the paradox: When he wasn’t violent, Alan was one of the most loving people I’ve ever known.

在某種程度上，他還算是個“狗語者”。看着他輕輕抱着小狗的樣子，你絕不會想到他能傷害別人。如果有能力的話，他或許會以救助動物爲生。矛盾之處就在這裏：在不暴力的時候，艾倫是我所認識的最有愛心的人之一。

When Alan died, I did not feel relief. I felt immediate, unmistakable sadness. I grieved not only for the loss of my brother, but also for the loss of any possibility for a better life for him or a closer relationship for us.

艾倫去世時，我並沒有感到解脫，而是立即明顯地感到悲傷。我傷心的不僅是失去了哥哥，也爲失去了他獲得更好的生活，或是我們能有更親密關係的可能性而感到難過。

The special needs landscape has changed a lot since the 70s and 80s, when Alan and I were kids. Back then, there were few resources to address his needs and stigma around having a special needs family member. My mother struggled, in part, because she believed she was utterly alone.

自70年代和80年代以來，特殊需求的格局已經發生了大幅改變，那時候我和艾倫還小。當時，沒多少能解決他的需求以及圍繞着一個擁有特殊需求家庭成員不光彩名聲的資源。我母親掙扎過，有一部分原因是因爲她認爲自己完全是一個人在承擔。

Today, about one in six kids in the United States has a developmental disability, according to the Centers for Disease Control and Prevention. There are services and support networks that simply didn’t exist when Alan and I were growing up.

根據美國疾病控制與預防中心(Centers for Disease Control and Prevention)的數據，今天，美國六個孩子中就有一個有發育性殘疾。現在的一些服務和支持網絡在我和艾倫長大時根本不存在。

I’ve often wondered if my family might have fared better if we had had the resources that are available today. I realized soon after Alan’s death that I’d been clinging to a sliver of hope that Alan would get better someday. I hoped there was still time to untangle the mixed emotions I felt toward him, that we could enjoy each other as adults in a way we couldn’t as children.

我常常會想，如果我們有今天的那些資源，我的家人是不是會變得更好。艾倫死後不久，我意識到自己一直抱着一絲希望，認爲艾倫有朝一日能好起來。我希望仍有時間，理順我對他的複雜情感，我希望我們能作爲成人享受彼此的陪伴，而這一點是我們小時候沒能做到的。

My relationship with Alan was tumultuous at best, terrifying at worst. Did I love my brother? Yes, deeply. Did I fantasize about how might life be without his condition, without the constant dark cloud of worry and fear? Yes, for as long as I can remember.

我與艾倫的關係往好了說是混亂的，往壞了說是可怕的。我愛我哥哥嗎？非常愛。我是否會幻想如果沒有他的病，沒有一直懸在頭頂的擔憂和恐懼，我們的生活會是什麼樣？會，從記事以來就會。

I recall a grade-school teacher telling me what a lucky little girl I was. “Your brother is special. You are so lucky to have him. He will teach you things that no other brother can.” At the time, those words stung. Lucky? I felt so very unlucky to be Alan’s sister. I felt small and unseen.

我想起小學的時候一個老師告訴我，我是一個多麼幸運的小女孩。“你哥哥很特別。你能擁有他是十分幸運的。他會教給你其他哥哥不能的事情。”當時那些話刺痛了我。幸運？作爲艾倫的妹妹，我覺得無比倒黴。我覺得自己渺小，無法被人注意到。

Looking back, I know this teacher was right. Alan taught me that humans are imperfect, vulnerable beings. Watching the way people behaved around my brother, I understood there is incredible kindness and unimaginable cruelty in the world. Thanks to Alan, I gained patience, empathy, diplomacy, maturity and compassion.

回望過去，我知道這個老師說的是對的。艾倫教會了我人類是不完美、脆弱的生物。看着人們在我哥哥身邊的舉止，我瞭解了世界上存在着無比的好意，以及令人難以想象的殘忍。多虧了艾倫，我變得有耐心、有共情能力、處事能力、成熟了起來，富有同情心。

Alan was my tormentor, but he was also my big brother. The profound love I felt toward him didn’t cancel out his violence. But neither did the abuse cancel out the love. I realized both could exist simultaneously.

艾倫是我的痛苦的來源，但他也是我的哥哥。我對他深刻的愛並沒有因爲他的暴力而消減。他的施虐行爲也沒有讓我不愛他。我意識到二者是可以同時共存的。

Through having my own kids and getting to know other families, I came to see that even at their best, siblings are rivals, competing for their parents’ affection, time and approval. In all the ways the relationship between Alan and me was different — more complicated, more extreme — we lived with an ambivalence that’s present in many families. I mourned the loss of my brother just as anyone would mourn a sibling, because in some respects, we were just like everyone else.

通過自己的孩子和對其他家庭的瞭解，我逐漸意識到，即使是在他們最好的時候，手足也是對手，會互相爲了父母的愛、時間和認可而競爭。艾倫和我之間的關係，從所有方面來說都與衆不同——更加複雜、更加極端——我們心中的矛盾情感在許多家庭都存在。我對我哥哥的哀悼，與任何人哀悼兄弟姐妹的方式一樣，因爲從某些方面來說，我們和其他人沒有分別。