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我与嗜睡症

I Can't Stop Falling Asleep | Living Differently

I mean, there are days that I do give up,
有段日子我确实放弃了
and those days make me super sad.
那时我失落到了极点
I call my mum crying, like,
我打电话跟妈妈哭诉
I don’t want to do anything apart from sleep.
我只想睡觉 别的什么也不想做
Narcolepsy has changed my whole life.
嗜睡症改变了我整个生活
我瞌睡不断
Excessive daytime sleepiness is what I think it defines as.
我把嗜睡症理解为白天严重嗜睡
They say that people with narcolepsy feel
据说患有嗜睡症的人就像
like if a normal person was not to sleep for 48 hours
一个48小时都没有睡觉
and then just be put in a working day.
又得继续投入工作的正常人
That’s how I feel every single day.
这就是我每一天的感受
If, four years ago, you were to put me in this position now,
如果四年前 叫我陷入目前这种状况
and tell me,”By the way, in four years, you’ll have to sleep eight times a day,”
并跟我说“四年间 你每天得睡八回
“you won’t really be able to sit down for lunch, dinner or breakfast without falling asleep,”
无法清醒地坐着享用一日三餐”
I’d be like,”There’s no point in living. I don’t want to live.”
我会觉得“活着没有意义 我不想活了”
23岁的Belle Hutt深受嗜睡症困扰
这种病使她无法自抑地每天要睡15回
并受幻觉折磨
The narcolepsy has changed my life.
嗜睡症改变了我的生活
I don’t really go out and socialise that much in the evening.
夜间我不大外出和社交
I get very paranoid or, I suppose,
我变得异常偏执 或者说
I get very panicky if friends invite me out,
如果朋友邀请我出去 我会很恐慌
because I want to go and I want to go and experience that sort of stuff with them,
因为我很想出去和他们一起尽情玩耍
but I’m so scared that I’m gonna fall asleep.
但很害怕到时会睡过去
I can’t get an office job.
我没法找到一份办公室的工作
I wanted to do interior design at university
原本想上大学读室内设计的我
I couldn’t even finish school.
连中学都没读完
I can’t even sit and have a meal without, without struggling.
甚至于只有强打精神 我才能坐着吃饭
I’ve had boyfriends I’m out for dinner with,
我曾有过共进晚餐的男朋友
I was starting doing something wired,
当我开始做一些奇怪的事
and he really was like,
他的真实反应是
“What the hell are you doing?!”
“你到底在做什么”
Like, made me feel so small.
这让我感到非常无助
I’ve had boyfriends in the past actually,
事实上我以前交往过的男朋友
who have broken up with me because of it.
都因嗜睡症而跟我分手了
I would say Maikel is one-of-a-kind
在应对我的问题方面
in the way that he deals with what I’ve got.
Maikel可谓独一无二
Belle和Maikel已交往三年
最近 Belle决定离开英国的家人
搬去阿姆斯特丹 和他住在一起
I first met Anna Belle when I was on a skiing holiday in 2014.
我初遇Belle是在2014年的滑雪度假中
We went out for some pizza that evening with a big group,
那晚 我们一大群人出去吃匹萨
and came home and then, my brother Nick said,
回家后 我的兄弟Nick说
“Did you notice that blonde girl just falling asleep all the time?
“你注意到那个长睡不醒的金发妹子了吗?”
and we were like,”Oh, she must have been so wasted.
那时我们觉得“她一定是疲惫过头了
Jesus, that’s weird!”
天啊 感觉怪怪的”
The day after I saw her in the après ski bar again,
第二天我在滑雪休息吧又看到了她
and I was like,”How drunk were you last night? “
我说“昨晚你是喝得有多醉啊?
You just kept falling asleep.”
一直昏睡不起”
And then she was like,” Well, actually, that’s not just the alcohol .”
她回我“实际上 不仅是喝酒的关系”
And then, when you said that you’d googled it
当你说你上网搜索过嗜睡症
and it was like such all bad videos and everything
结果似乎都是不怎么好的视频和内容
and then I just said,
我只是说道
“Just get to know me, and trust me, it’s not like that.”
“试着了解我吧 相信我 事实并非如此”
We got one time we were in Paris,
有一次我们在巴黎
and people were just staring kind of you are some circus act
人们盯着她 就好像在看马戏表演
That was one moment where I was really close to stepping in.
那一刻我真的忍不住要做点什么了
So when Belle is drifting into an episode,
当Belle不知不觉地要症状发作时
I can kind of notice that straightaway,
我能立即注意到
because one moment we’re talking about something
因为前一刻我们还在谈论某事
and she’s quite lively, and then
她还相当活跃
the other moment she’s just kind of gone,
可下一刻她就走神了
and she’d be talking about a completely new subject
开始讲一个全新的话题
and doesn’t really know what she’s saying.
也不大清楚自己在说什么
We used to watch films together,
我们过去常一起看电影
and sometimes a series,
有时看电视剧
but it’s not really fun, because…
但其实不怎么有趣
… she’s just asleep most of the time.
因为 她大部分时间都在睡觉
So now, I never watch a series with her any more.
现在我再不和她一起看电视剧了
If she doesn’t have this sleep, she’ll stay,
如果她那会儿不睡觉的话
she’ll keep fighting and fighting and fighting with you,
就会跟你一直吵来吵去
she won’t snap out of it
她没法摆脱这种习惯
so it’s good for her to be safe and have a sleep.
所以 安心睡觉对她来说也蛮好的
I think she’s always quite sharp when she wakes up.
我觉得 她醒来时总是很敏锐
She’s like… She just wakes up, and,”How long was I gone for?” is always the first question.
醒来后第一个问题总是“我睡了多久”
What time do you guys need to go?
你们需要几点走?
[SHE MUMBLES]
[她咕哝了一声]
What time do you guys need to go?
你们需要几点走?
Maikel, what’s the time?
Maikel 几点了?
It’s 4:05.
四点零五分
What time do you want to go?
你想什么时候走?
20 past.
再过二十分钟
Nice little power nap.
打个小盹元气满满
How long did I sleep for?
我睡了多久?
– Er, ten. – Oh. Nice.
– 十分钟 – 噢 太棒了
I needed just that little..and just ten minutes.
我只需要睡那么一小会儿 十分钟
Then just back. Back now!
之后就会醒过来 现在清醒啦!
So I’m just packing my stuff now,
我现在就收拾行李
actually going back to the UK.
要回英国去
I’m really excited, I’m going to see my mum.
心情很激动 我要见到妈妈了
wow!
哇!
I discovered I had narcolepsy when I was 17.
十七岁时我发现自己得了嗜睡症
I said to my mum,”I sleep really well at night
我对我妈说“晚上我睡很饱
and I’m still falling asleep in the day. Can I go to the doctor’s?”
但白天还要睡 能去看看医生吗?”
This one, I look like, um, a genie.
这一张我看起来像只精灵
I remember, we were like,”What is narcolepsy?”
我记得当时我们问“什么是嗜睡症?”
I remember you saying,”Is there a cure?”
我记得你说“能治愈吗?”
The doctor was like, ” It will only ever actually just get worse.”
医生说“这种症状只会越来越糟”
At school, there were a few people in lessons that would tap each other,
上学时 有个别喜欢恶作剧的同学
they would be like they would film me,
他们会拍摄我打瞌睡
my friends have drawn on my face, like, countless times.
朋友们在我脸上画画 太多次了
Actually, the teachers were the worst,
说真的 老师才是最差劲的
because the amount of times they’d be like,
因为他们总在说
“Belle,what were you doing last night?
“Belle昨晚你干什么去了?”
“Belle,maybe don’t go out so late.”
“Belle那么晚就不要出去玩了”
Actually teacher threw a pen at me once and they like,
有次老师朝我丢了一支笔 说
“Don’t fall asleep in my class! Am I that boring?”
“别在我的课上睡觉!有那么无聊吗?”
so that’s actually why I left school.
因此我退学了
My biggest concern was leaving you alone –
我最担心的就是留你自己在家
are you going to fall asleep in a sort of dangerous situation?
危急情况下 你会不会也睡过去呢?
Yeah, because I fell asleep one time when you were in France, and I had that
会的 你在法国那时 有次我睡着了
really bad hallucination, and I called you, crying my eyes out.
出现严重的幻觉 我撕心裂肺地哭着喊你
The biggest scare is the hallucinations.
最让人害怕的就是幻觉
Thinking that there’s somebody stood outside her bedroom,
认为有人站在她的卧室外
somebody coming in her bedroom, somebody holding her down,
有人进到了她的卧室里 有人把她按倒了
and when you’re not there, it’s very scary, because,
当你不在时 这真的很可怕
is there somebody actually in the house? Is there somebody going into her bedroom?
会不会真有人在房子里?进了她的卧室?
Because she really does believe that there is somebody there.
因为她真的相信有人在那里
Everyone worries about their children, it’s quite a natural thing.
担心自己的孩子是人之常情
Less so now, because Maikel is an absolute huge support.
现在好多了 因为Maikel给了很大的支持
接受两种药物治疗的同时
Belle发现锻炼也能帮她保持清醒
她用#energeticnarcoleptic话题与病友们建立联系
When I’m in the gym and
当我在健身房
I’m doing running or high-intensity stuff,
跑步或者做其他高强度运动时
that’s when I feel the most amazing, and I thought,
那是我感觉最棒的时候 我想
“I want to be a personal trainer.”
我要成为一名私人健身教练
Hey, Belle. Hey.
嘿 Belle
OK, let’s go! Make sure you stretch when you get to the top.
开始吧 手抬高时 全身拉伸
Six, five, four, three…
6 5 4 3 ……
After I’ve done an exercise class, I literally feel –
上完一节训练课后 我真的感觉—
it might sound a little bit cliched – but I just feel on top of the world,
听着有点老套—但就是感觉站在世界之巅
and I think that’s because I know the extreme other end.
我想这是由于我感受到了相反的极致状态
I understand that some people are like, “Yeah, you feel good after exercise.”
我理解有些人说的“运动后就是很舒服啊”
But I’m like,”You don’t understand HOW great I feel.”
但其实你无法体会我感觉有多么多么好
After I’ve done a class, instead of driving straight home,
上完一节课后 我不会立马开车回家
I normally just come in here and take a quick nap.
我通常都会来这里短暂小睡
And these are really convenient – I don’t actually know what they’re used for,
这些用起来很方便 我不大知道它们的用途
exercise wise, but I use them as a pillow. And then,
运动有关的 但我把它们当枕头用
I grab one of these blankets.
然后我还会拿一条毯子
I suppose they knew I was coming when they built the gym!
估计他们造这所健身房时 就知道我要来
It may be only, like, 10 or 15 minutes,
只要十或十五分钟
but everyone here completely understands and knows
不过这里的每个人都完全清楚并理解
and they’re like,”Belle’s in the yoga room, sleeping,”
他们会说“Belle在瑜伽室睡觉呢”
and it’s completely normal.
这再正常不过了
I don’t think I could have got to where I am today
如果没有妈妈和Maikel
without my mum and Maikel.
我不会走到今天
I think those two are the two that really stand out.
他们二人尤为坚定地支持我
I will do everything I can
我会尽我最大的努力
to overcome every aspect that hits me of narcolepsy,
去战胜嗜睡症对我方方面面的打击
because I’ve got it, but it doesn’t have me.
我是得了这病 但它决定不了我的人生

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视频概述

讲述嗜睡症患者的生活,她得到了亲人与爱人的支持,也找到了自己与嗜睡症的相处之道。

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收集自网络

翻译译者

晚糖

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视频来源

https://www.youtube.com/watch?v=AUOVWPEWksw

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