讲故事与叙事2022thewalrus.ca
妻子患上阿尔茨海默症后，我们的婚姻故事让我们保持联结
When my wife developed Alzheimer’s, the story of our marriage kept us connected
导读
一位丈夫记录妻子罹患阿尔茨海默症后，两人如何靠反复讲述共同的婚姻故事维持联结。它值得写作者读，因为它示范了如何把最私人的照护经历写成不煽情的叙事：具体物件、真实的不完美、以及“讲故事”本身作为关系纽带的力量。评论区的读者也补充了照护现场更残酷的一面，提醒写这类题材时不要美化。
可以直接用的写作要点
- 01
把抽象的情感落到可反复出现的具体物件上——花束、相册——让读者自己感到时间的流逝，而不是由作者宣告悲伤。
- 02
写爱情与亲情时避开“电影版真爱”，保留不完美、不理性甚至粗粝的部分，可信度反而更高。
- 03
让“讲述故事”本身成为叙事动作：人物一遍遍重述共同的往事，读者就能看见记忆消退时关系如何被维系。
- 04
用短促而具体的生理细节（颈椎里两块不听话的骨头、大脑里的斑块）承载巨大的丧失，比形容词更有力。
HN 评论精选
真实的脆弱细节比“真爱”宣言更打动人，怀疑者也会被说服。
“很难接受朱迪可能已经彻底忘了我，但与残障共处的一生让我明白，人的身体和心智有多脆弱，多小的变故就能戏剧性、创伤性地改变甚至终结一个人的生活。我颈椎里两块不听话的骨头，我爱人大脑里的斑块。”这段话写得极其动人。我平时对“真爱”持怀疑态度，但这类故事让我意识到自己可能大错特错——像朱迪和史蒂夫这样彼此投入的人实在少见。
srvmshr查看英文原文
> It’s hard to accept the possibility that Judy may have completely forgotten about me, but a lifetime of living with disability has shown me how delicate human bodies and minds can be, how little it can take to dramatically, traumatically alter—or end—lives. Two rogue bones in my neck. Plaque on my beloved’s brain. Great love stories begin with such heady promise and end with such sadness and grief—but, at least in my case, also with memories of immense joy throughout a muscular marriage of two strong, supportive partners with challenges aplenty. So poignantly expressed. I am usually skeptical of 'true love', but these kind of stories remind me I could be so utterly wrong. It is rare to find people as committed to each other as Judy & Steve.
照护现实远比温情叙事残酷，写这类题材必须承担这种重量。
故事很美，但说实话，阿尔茨海默症／失智症就是一场灾难，我连最恨的人都不愿它落在头上，没有比失智更残忍的事。我母亲正在经历失智。我们做过类似的事：做相册，每天一起翻，直到她不再有反应；几年内她忘了我们是谁，或把我妹妹认成她姐姐。确诊七年后，她不再说话，也不再回应我。妹妹全职照顾她，每天要给她清理好几次，因为她失禁。最近她开始无法吞咽，还似乎染上了轻症新冠，妹妹为此自责不已，我告诉她没必要，谁都可能感染。我心里其实暗暗希望这病能带走她，结束她的痛苦。最难熬的是最初几年的清醒时刻：她给上帝写过一封信，请求死去，因为她知道自己出了问题却说不清是什么。信藏在她的梳妆柜里被我们找到，直到现在我一想起就哭。一个为子女和家庭奉献一生、别无所求的人遭这样的罪，残忍得令人作呕。
baskethead查看英文原文
It's a lovely story, but quite honestly, Alzheimer's/dementia is a shitshow. I wouldn't wish it on my worst enemy and there are many people I despise. There is nothing crueler than dementia. My mom is suffering through dementia right now. We did something similar. We made photo albums, and went through them every day, until my mom stopped responding to them. Within a couple of years, she forgot who we were, or she would mix up my sister for her sister. After 7 years from her diagnosis, she no longer talks and she no longer responds to me. My sister is taking full time care of her, and she is cleaning her several times a day because she's incontinent. My mom recently has stopped swallowing. She also seems to have contracted a mild case of COVID, and my sister has been self-flagellating herself because she felt guilty about it. I of course told my sister there's no reason to feel guilty, everyone is getting it and it's something everyone will deal with, especially my mom. I secretly wish it would take my mom's life to end her misery. The worst part in the first few years were her lucid moments. During one of those moments she wrote a letter to God, asking to die, because she knew something was wrong but she didn't know what. We found the letter hidden in her dresser. Every time I think about it, I burst out in tears, even now. It's disgustingly cruel for someone who spend her entire life sacrificing her life for her kids and family, and asking nothing else. So when articles like this come out, it is extremely difficult to contain my contempt at any stories that don't paint the picture exactly how it is: a complete and utter shitshow. It's unfair for the victim and it's unfair for the caretakers. And it's extremely expensive and almost impossible to keep your loved one living in a modicum of dignity.
不完美而持续的爱，才是更值得书写的“真爱”范本。
写给可能还没经历过这些的年轻读者：忘掉电影版的那种真爱吧。这个故事才是更好的例子——它不完美、不合逻辑、有时甚至难堪粗粝，却一直延续下去（其间还穿插着一束束鲜花）。
smoyer查看英文原文
For those of you who are younger and perhaps haven't experienced it, forget the movie version of true love. This story is a much better example - it's imperfect, illogical, sometimes downright gritty and yet it persists (with bouquets of flowers spread throughout).
这类题材不只是个人故事，它指向每个读者都将面对的现实。
失智症是很多人未来会遇到的事——不是你，就是你的父母、子女、朋友或同事。总有一天你会亲眼见到某个患病的人，那真的非常可怕。请向你所在国家的失智症／阿尔茨海默症研究基金捐款。
austinjp查看英文原文
Dementia is in the future for many of us. If not you then your parents or children, or friends, colleagues, whatever. You'll see someone with it, one day, and it's truly horrible. Donate to your nation's dementia or Alzheimer's research foundations.
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