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兄弟情:与患埃斯伯格症的哥哥之间的故事

kira86 于2019-02-13发布 l 已有人浏览
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弟弟与患有埃斯伯格症的哥哥之间的故事,有时候想逃离,有时候又想要保护他。
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27哥哥.jpg
27 Oh, Brother

我爱我的哥哥

I used to feel doomed . I used to worry that I would grow up to be like my brother. I didn't understand why Eric behaved the way he did, and I was afraid I'd catch his problems. Now I understand that my brother and I are different.

我以前常常觉得一切都是命中注定。我常常担心自己长大了会像哥哥一样。我以前不明白为什么埃里克会是那个样子,也很害怕自己会变成他那样。现在我明白了,哥哥和我是不一样的。

Eric has Asperger's syndrome . It means he has a hard time making friends. Sometimes he screams and cries, and he worries about everything. Crowds and noises make him uncomfortable, he hates the way some foods feel on his tongue, and he tears the labels out of his clothes. He doesn't like to be touched. But most of all, having Asperger's syndrome can mean feeling lonely. I think Eric sometimes feels like a puzzle piece that doesn't fit the puzzle. It looks like it should fit, but it doesn't.

埃里克患有埃斯伯格症。这就意味着他很难和别人交朋友。有时他会大哭大叫,对什么事都感到焦虑不安。人群和噪音会令他心神不宁。他讨厌某些食物的口感,还把衣服上的标签扯掉。他不喜欢别人碰他。最糟糕的是,患有埃斯伯格症可能意味着感到孤独。我觉得埃里克有时感觉就像拼图玩具中不合适的一块——看着好像能拼上去, 实际上却不能。

I'm only eight, but everyone asks me to be understanding and patient with Eric. Sometimes it's too much—I just want to be a normal child with a normal family. Sometimes I wish I could just go to live with a different family, or stay in a hotel, just to get away.

我只有八岁,可是大家都要我体谅埃里克,要对他有耐心。有时候真让人受不了——我只想做一个正常的孩子,拥有一个正常的家庭。有时候我希望自己去另一个家庭生活,或者去住旅馆,只要能逃离就好。

Even little things, like getting ready to go out, take ages. Eric can never leave the house without certain toys. It doesn't matter how late we are; he has to find the toys he needs. If he can't find them, he has a tantrum . I get scared, then. When he's having a tantrum, he screams and throws things. He says horrible things-that he hates me, and that I'm stupid-or he hits me. Sometimes I feel like I am the only kid who has to deal with all this. That makes me feel lonely.

即使是一点点小事,比如准备出门,都要拖拖拉拉很长时间。埃里克要是不带上他那几样玩具就绝不肯走出大门。不管我们晚了多久,他一定得找到他要的那些玩具。如果找不到,他就大发脾气。每当这时候,我就会很害怕。他发脾气的时候会尖声叫喊,乱摔东西。他要么说一些很难听的话——他说他恨我,说我是个蠢货——要么就揍我。有时候我觉得自己是唯一一个不得不应付这种事的小孩子。这让我觉得很孤独。

But other times I feel protective of him. Eric gets very nervous with people he doesn't know. When he gets nervous, he doesn't know what to say or do, so he just stands there looking scared. And when he gets scared, he has tics —sometimes he shakes his head, sometimes he sniffs or coughs a lot, sometimes he throws things up in the air, and sometimes he picks at his skin or cuts his clothes. My family is used to his tics, but most kids think it's weird, so they tease him. I am not afraid of other kids. If I was there when they bullied him, I would tell them to leave him alone.

但是有的时候,我觉得我想保护他。埃里克在他不认识的人面前特别紧张。他一紧张就不知道该说什么或者做什么,因此他就只是站在那里,看上去吓坏了的样子。他害怕的时候就会抽搐——有时候会摇头,有时候会使劲抽吸鼻子或者不停咳嗽,有时候会把东西扔到半空中,有时候会掐自己的皮肤或剪自己的衣服。我们家的人对他的抽搐已经习以为常,但是别的孩子大多会觉得他行为古怪,便嘲笑他。我不怕那些孩子。我要是看到他们欺负他,就会警告他们离他远一 点。

Eric is very funny and he likes to act silly a lot of the time. I usually enjoy watching him—he makes me laugh. But sometimes I just don't feel silly. I ask him to stop, but he doesn't. It really gets on my nerves ! Other times, Eric comes into my room while I'm sleeping and wakes me up. He knows I'm sleeping, but he wants to be with me. I know that he feels lonely,so I don't want to get cross , but I really hate it when he wakes me up.

埃里克非常逗,他经常喜欢装傻充愣。我经常喜欢看他表演——他能逗笑我。但是有的时候我不想犯傻。我要他停下来,可他就是不停,真把我气坏了。有时候,埃里克会在我睡觉的时候到我房间里来,把我弄醒。他明知我在睡觉,可他还是想和我玩。我知道他感到孤单,所以我不想对他发脾气,但是我真的很讨厌他把我弄醒。

It's even hard sometimes when Eric just wants to show me he loves me. He likes to hug me or give me a kiss. I love him too, but sometimes it bothers me the way he shows his love: he hugs me too tight, or gives me slobbery kisses. Mum tries to teach him how to be gentle, but he just doesn't seem to get it.

甚至有时,埃里克只是想表示一下他爱我都不是件容易的事。他喜欢抱我或者亲我。我也爱他,可是有时他表达爱的方式真让我受不了:他要不就把我抱得太紧,要不就口水嗒拉地亲我。妈妈也试着教他怎样动作轻一点,可他似乎就是学不会。

I know that Eric needs special help, but sometimes I resent that he gets to do special things, even though he misbehaves. And Mum and Dad spend lots of money to get help for Eric, which means that we don't have money left for fun things like holidays.

我知道埃里克需要特殊的帮助,但是有时候即使他表现很差还能受到特殊待遇,我就会觉得很生气。爸爸妈妈为了给埃里克治病花了很多钱,这样我们就没有钱去享受诸如度假之类的乐事了。

Sometimes I feel embarrassed about him. Eric's 13, but he still likes to dress up like his favorite TV characters. He always wants me to play along, which is fine when we are at home. But I feel silly when he wants me to do it in public, like at the supermarket.

有时候我会为他而感到很难为情。埃里克都13岁了,还喜欢打扮得像他最喜欢的电视剧里的人物一样。他总是要我也这样陪他玩。在家里的时候倒也没什么,可是在公共场合,比如在超市,他还要我这样,我就觉得太傻了。

Sometimes I don't want to talk to my friends about Eric because I am embarrassed to tell them about the things that he does. I am afraid that people in my school will know that he is my brother, and they won't want to be my friends. But even though Eric bothers me sometimes, I miss him when he is gone. I enjoy being away from him for a couple of hours, but I hate it when he is away for a long time.

有时候我不愿和朋友们谈论埃里克,因为说起他做的那些事我会觉得很难堪。我怕学校里的人知道他是我哥哥,怕他们不想再和我做朋友。可尽管埃里克有时会让我心烦,如果他不在我还挺想他的。离开他几个小时我会很开心,但是如果长时间离开他我就不乐意了。

Eric doesn't have many friends. When I play with Eric, he wants everything to be his way and he likes to do the same things over and over again. He likes to watch the same TV programme, listen to the same songs, and play the same games. If he says or does something to make you laugh, he will keep doing it even after it isn't funny any more. He never knows when to stop.

埃里克朋友不多。我和他一起玩的时候,什么事情都要按他说的办,而且他喜欢重复做一件事情。他喜欢看同样的电视节目,听同样的几首歌,玩同样的几个游戏。如果他说了什么或做了什么把你逗笑了,尽管那已经不再好笑了,他还会老说老做。他从不知道什么时候该停。

I feel sad that Eric's life is so hard for him. I wish he had more friends. I wish school were easier for him. I wish he didn't have to have tantrums. I wish he could be happy more of the time. Sometimes I even think that he has changed and I start to trust him. He does his homework or takes a shower without complaining, and then I think that maybe he will be all right after all.

埃里克的生活真是太艰难了,我为他感到难过。我希望他能有更多的朋友;我希望他能更加适应学校生活;我希望他不要总是发脾气;我希望他快乐的时候能更多一些。有时我甚至觉得他已经变了, 我开始信任他了。他做作业或洗澡时不再满腹牢骚,这时候我就想, 或许他终究会好起来的。

Eric's behavior upsets Mum and Dad, and I don't want them to be unhappy, so I often feel that I can't make mistakes or do anything wrong because they will end up being even more upset. For example, when Dad cooks something new, Eric won't taste it. Sometimes he has a tantrum if someone asks him to eat something he doesn't think he will like. It can ruin the whole dinner. So I feel like I have to eat everything Dad makes and say "It's great!" even if I don't really like it.

埃里克的行为让爸爸妈妈很伤心。我不想看到他们不高兴,所以我常常觉得自己不能犯错误或做错事,因为那样会让他们更难过。比如说,爸爸要是做了什么新菜,埃里克是不会去尝一口的。有时候要是别人让他吃他觉得自己不会喜欢的东西,他就会大发脾气,那这一顿饭就算是毁了。所以我觉得爸爸做什么我就应该吃什么,哪怕我并不是真的喜欢,也要说“味道棒极了”。

Even though Mum and Dad tell me that I don't have to fix the family's problems, I still feel that I have to do it. Trying to be perfect is very exhausting.

虽然爸爸妈妈叫我不必操心家里的这些事儿,可我觉得我不得不操心。要想把什么都做得完美真是太让人身心疲惫了。

I spend even more time with Eric than Mum and Dad. I always feel that I have to watch him to make sure that he's OK. It's hard to have fun while you are worrying about someone else. Sometimes I feel like I'm the older brother even though I'm not.

我和埃里克在一起的时间比爸爸妈妈和他在一起的时间还多。我总觉得我得看着他点儿,别让他有什么闪失。当你担心着别人时,就很难玩得开心。尽管我是弟弟,有时候却觉得我是哥哥。

Deep down, I know Eric doesn't do it on purpose. I know that he feels scared when he is out of control, and I know he regrets saying mean things to me. So, no matter what Eric says or does, I always forgive him. I always still love him.

在我内心深处,我知道埃里克不是故意要那样的。我知道当他无法自控时就会感到害怕,我知道他在辱骂我之后会感到内疚。所以,无论埃里克说了什么或做了什么,我都原谅他。我仍然会爱他。

Eric can make me laugh so hard that I can't breathe. When I cry, he tries anything and everything he can think of to make me happy. He brings me stuffed animals and acts silly to make me laugh. He waits for me when I'm busy and he likes to pick me up from the school bus. He takes me for rides on his skateboard. He tries to get me interested in things that are important to him. Eric helps me find things when I lose them. He always knows where I am and what I am doing. He worries if I am not where he expects me to be.In his own way, he watches out for me and tries to take care of me. He loves me.

埃里克能让我笑得喘不过气儿来。在我哭泣的时候,他想方设法地逗我开心。他给我拿毛绒填充动物玩具,做傻乎乎的动作逗我笑。如果我在忙,他会等着我;他还喜欢到校车停靠站接我回家;他用滑板带我一起玩。对于那些他觉得重要的东西,他极力想让我也产生兴趣。我要是丢了东西,埃里克会帮我找。他总是知道我在哪儿、在干什么。要是我不在他认为我应该在的地方,他就会担心。他以他自己的方式看护着我、照顾着我。他爱我。

Even though life is a challenge for Eric, he never stops trying. I am proud of him.

尽管生活对埃里克而言是一种挑战,但是他从来没有停止过努力。我为他感到骄傲。

(By Sam Frender )

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