哥哥曾是我痛苦的来源,但我依然爱他

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.”

当我的哥哥艾伦43岁突然去世时，我收到了不少寻常的哀悼，也有几个不寻常的。有一个朋友发信息说，“很高兴你肩上的重担终于卸下了。”另一个朋友只是抱了抱我，然后说，“我希望你终于能获得一些平静了。”

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

这些朋友认为我哥哥的去世会给我带来一些解脱，认为在他还年轻时失去他，是因祸得福。

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.

从更深层次上来说，他们的信息是试图理解一种不符合常规死亡、痛失亲人的情况。艾伦不是一个典型的哥哥，我们的关系也不是典型的手足关系。我与我哥哥的关系是矛盾的——充满爱、恐惧、同情、尴尬、感激和怨恨。因为这一点，他们便猜测失去他会有些不一样，可能会容易一些。

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.

我哥哥是个有着成年人躯体的五岁小孩。他生来就有遗传异常，导致认知迟缓，暴饮暴食（极度饥饿）、讲话含糊不清，心情会无法预料地从充满爱意转换到暴力。

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.

直到艾伦30多岁的时候，他才被诊断出普瑞德威利综合征(Prader-Willi syndrome)，这是一种由于第15号染色体基因缺陷引起的智力残疾。我母亲怀疑他还有其他问题。他是臀位分娩出来的，脐带缠住了脖子。她觉得这可能导致他的脑部受到了损伤。她说，当时他整个人软软的，没有哭。

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.

艾伦需要人一直看着。如果不管他，他会一直吃东西，吃到吐。他会吃垃圾里的食物。他会因为试图用牛排刀撬开铝罐而割伤自己。他会开炉火。

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.

这意味着尽管我比他小三岁，但我迅速超越了他。我反而成为了姐姐，“正常”的那个。我是人们安慰我母亲时所指的那个人。至少你有个完美的女儿。

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，家里有一个残障儿童是一种病，而我就是解药。后来，我父母又生了一个正常的孩子，我的弟弟安德鲁，但即使是这样，他们仍然一直处在悲痛中。父亲在我五岁时搬出去了。

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.

我母亲从未从打击中恢复过来。她患有严重抑郁症。我从很小的时候起，就帮忙承担艾伦父母的角色，这意味着我还承受着他暴力爆发时的那些冲击。他从来不能理解为何他妹妹要来管他。因此，如果我让他刷牙或是发现他暴饮暴食时，他的回应是用拳头捶打我、将我的头撞到墙上，或是拽住我的头发将我在地板上拖来拖去。过后，看到我蜷缩在一边流血，他会哭着道歉。他从没有要伤害我的意思。他的大脑只是不知道该如何控制他的身体。

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.

有时候也有平静的时刻。当我母亲不在时，我会送艾伦上床睡觉，在额头上亲吻他，然后听着他讲他最喜欢的电影，直至他渐渐睡去。只要他认识了新的朋友，就会问他们的鞋码和电话号码，然后记在心里。我们常常会发现他打电话给新朋友，有时候是在半夜。

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.

在某种程度上，他还算是个“狗语者”。看着他轻轻抱着小狗的样子，你绝不会想到他能伤害别人。如果有能力的话，他或许会以救助动物为生。矛盾之处就在这里：在不暴力的时候，艾伦是我所认识的最有爱心的人之一。

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.

艾伦去世时，我并没有感到解脱，而是立即明显地感到悲伤。我伤心的不仅是失去了哥哥，也为失去了他获得更好的生活，或是我们能有更亲密关系的可能性而感到难过。

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年代以来，特殊需求的格局已经发生了大幅改变，那时候我和艾伦还小。当时，没多少能解决他的需求以及围绕着一个拥有特殊需求家庭成员不光彩名声的资源。我母亲挣扎过，有一部分原因是因为她认为自己完全是一个人在承担。

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.

根据美国疾病控制与预防中心(Centers for Disease Control and Prevention)的数据，今天，美国六个孩子中就有一个有发育性残疾。现在的一些服务和支持网络在我和艾伦长大时根本不存在。

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.

我常常会想，如果我们有今天的那些资源，我的家人是不是会变得更好。艾伦死后不久，我意识到自己一直抱着一丝希望，认为艾伦有朝一日能好起来。我希望仍有时间，理顺我对他的复杂情感，我希望我们能作为成人享受彼此的陪伴，而这一点是我们小时候没能做到的。

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.

我与艾伦的关系往好了说是混乱的，往坏了说是可怕的。我爱我哥哥吗？非常爱。我是否会幻想如果没有他的病，没有一直悬在头顶的担忧和恐惧，我们的生活会是什么样？会，从记事以来就会。

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.

我想起小学的时候一个老师告诉我，我是一个多么幸运的小女孩。“你哥哥很特别。你能拥有他是十分幸运的。他会教给你其他哥哥不能的事情。”当时那些话刺痛了我。幸运？作为艾伦的妹妹，我觉得无比倒霉。我觉得自己渺小，无法被人注意到。

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.

回望过去，我知道这个老师说的是对的。艾伦教会了我人类是不完美、脆弱的生物。看着人们在我哥哥身边的举止，我了解了世界上存在着无比的好意，以及令人难以想象的残忍。多亏了艾伦，我变得有耐心、有共情能力、处事能力、成熟了起来，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.

艾伦是我的痛苦的来源，但他也是我的哥哥。我对他深刻的爱并没有因为他的暴力而消减。他的施虐行为也没有让我不爱他。我意识到二者是可以同时共存的。

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.

通过自己的孩子和对其他家庭的了解，我逐渐意识到，即使是在他们最好的时候，手足也是对手，会互相为了父母的爱、时间和认可而竞争。艾伦和我之间的关系，从所有方面来说都与众不同——更加复杂、更加极端——我们心中的矛盾情感在许多家庭都存在。我对我哥哥的哀悼，与任何人哀悼兄弟姐妹的方式一样，因为从某些方面来说，我们和其他人没有分别。