植物人女孩的日常生活（19岁的植物人美美）

2014年8月，一场意外让19岁的女孩美美成为植物人，在最美的年华陷入了漫长的沉睡。

自此，美美的妈妈陈淑芳开始了一场数年如一日的人生。

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01

“深海里的沉睡者”

植物人作为一个时常被遗忘的特殊群体，有另外一个美丽而忧伤的名字——“深海里的沉睡者”。

他们虽然活着，却如同行走在深海之中，周身被漫无边际的黑暗环绕，灵魂无处安放。

他们的亲人往往近在咫尺，却无法与他们交流。

在医学上，对植物人的定义是清晰又残酷的——

植物人（persist vegetative states）是与植物生存状态相似的特殊的人体状态。除保留一些本能性的神经反射和进行物质及能量的代谢能力外，认知能力（包括对自己存在的认知力）已完全丧失，无任何主动活动。又称植质状态、不可逆昏迷。植物人的脑干仍具有功能，向其体内输送营养时，还能消化与吸收，并可利用这些能量维持身体的代谢，包括呼吸、心跳、血压等。对外界刺激也能产生一些本能的反射，如咳嗽、喷嚏、打哈欠等。但机体已没有意识、知觉、思维等人类特有的高级神经活动。

对他们来说，最大的敌人不是死亡，而是活着却不能醒来。

2014年8月，美美出事后，突如其来的巨大打击让陈淑芳在短短几天内瘦了20斤。

她难以相信“植物人”这个平常只出现在影视作品中的词汇，竟变成自己女儿的形容词。

在悲痛中接受现实，陈淑芳问医生，救醒女儿的几率有多大，医生的回答犹如晴天霹雳——“零。”

那段最艰难的日子里，陈淑芳曾四次被要求签署病危通知书。隔着屏幕看着ICU病床上的女儿，连她的呼吸起伏都感受不到。

医生跟陈淑芳说，可以考虑再要一个孩子了。

但陈淑芳不愿放弃。每日醒来，给女儿洗脸、喂水、喂饭、输液、擦身……在渺茫的希望中等待一个奇迹。

尽管经济条件并不富裕，但陈淑芳告诉医生，无论用多贵的药，也要救。

在医学上，植物人苏醒几率需要经过一系列临床及实验室评估后得出。一般而言，患者昏迷后的前三个月被判定为恢复意识的关键期。越往后，醒来的几率也越小。

也许是不忍心看到妈妈这样辛苦——2014年10月，在病床上“沉睡”了两个月后，刚过完20岁生日的美美流下了一滴眼泪。

植物人流眼泪并不代表意识恢复，更多情况下只是一种生理性反应。

但对陈淑芳来说，这并不是一个可以冷静的时刻：

不管是意识恢复还是生理反应，眼泪就是希望。

In October 2014 in a hospital in southern China's Guangzhou, Meimei, who had just turned 20, shed a single tear.

The tear slid down her cheek for the first time after an accident left her in a prolonged vegetative state. In the past two months, she seemed to go in and out of sleep, her eyes closed, showing no signs of consciousness. Her mother, Chen Shufang, immediately sensed the significance of the move – there was hope her teenage daughter would wake up.

Pulling patients out of a vegetative state is a race against time. The first three months is normally considered the window of opportunity for patients to recover consciousness, with the likelihood diminishing the longer a patient stays in a vegetative state. As Meimei lay still in the intensive care unit (ICU) unresponsive, doctors approached Chen, suggesting that she consider having another child because her daughter was unlikely to ever wake up.

The aftermath of the tragedy weighed way more than the accident itself. Chen lost 10 kilograms in the days following the accident. Consumed by anxiety, she sometimes collapsed in the street while walking. In the first few years after the accident, her husband, now separated, would sometimes come to the hospital to take care of Meimei, but on most days, Chen was the only one at her daughter's bedside.

Meimei had a history of recurrent fever, and whenever her fever spiked again, Chen would spend endless sleepless nights tending to her needs – wiping her body, keeping her hydrated, making sure doctors would come when the situation deteriorated. When Meimei was sent to the ICU, Chen would wait outside the ICU room, hoping that her presence would give her daughter some comfort.

In late 2014, one step at a time, Meimei started to show flickers of awareness. She could wiggle her toes, just the tiniest bit, and then her hands. When a video documenting her life before the accident was presented to her, her eyes gazed at the screen intently, and tried to turn around when the caretaker holding the screen moved to the other side of the hospital bed. Doctors said she had progressed from the vegetative state and gained minimal consciousness.

But the awakening of Meimei did not come around like movies where vegetative patients all of a sudden wake up and can speak and walk. Doctors said that Meimei had the intelligence level of a kid in kindergarten and Chen had to teach her daughter to start from the very basic forms of expression. She taught Meimei to count by letting her hold up a given number of fingers. The first time Meimei uttered the word "mom," Chen could not contain herself. She cried.

Vegetative patients, as well as their family members, need psychological comfort and reassurance, in the face of mounting pressure post-accident, said Dr. He Yanbin from Guangdong Provincial Work Injury Rehabilitation Center, who was among the doctors that treated Meimei.

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02

“医学与艺术的奇迹”

看到希望后，陈淑芳更是全身心地投入到对美美的照顾中。

她带着美美搬了四次家，每转一次院就搬一次家，通常都是在离医院最近又最便宜的地方租房子。

在医生的介绍下，陈淑芳认识了“植物人艺术唤醒公益项目”的发起人——视听艺术家吴超和丈夫夏维伦。

2014年，吴超和夏维伦将艺术与医学结合，创立了“植物人艺术唤醒室”，试图通过声音、视觉等艺术表达方式为植物人群体制订视听刺激方案，为植物人促醒提供另一种可能。

就目前而言，临床上常用的植物人促醒治疗主要是高压氧治疗，以及声光电磁等各种物理刺激。

艺术是浪漫和充满想象力的。在讲求严谨客观的医学面前，引入人文艺术刺激对植物人促醒究竟能有多大作用，目前尚未有定论。

但对陈淑芳来说，任何值得尝试的途径都绝不能放弃。既是免费的项目，又可能帮到女儿，她决定无论如何也要去试试。

于是，从2014年10月开始，陈淑芳和吴超、夏维伦开始了针对美美意识唤醒的各种努力。

他们模拟美美从前生活的各种场景，将其做成音频和视频，放在美美的病床前循环播放——

在这之中，有陈淑芳敲门叫美美起床上学的催促声，有陈淑芳在厨房做饭时碗碟碰撞的叮咚声，有美美床边音乐盒的旋律声，还有美美心爱的小狗的叫声……

“无论她看不看，我们整天都给她放。”

也许是医学治疗和视听唤醒共同起了作用，慢慢地，美美开始能够感知周围的一切。

2015年1月1日，像上天给予的新年礼物一样，沉睡了四个月的美美醒了——她的身体终于对外界的声音有了微弱的回应。

但苏醒，却只是一切的开始。

Gradually, Chen had also found her own team of allies. Wu Chao, an artist who was thinking of using art therapy to awaken patients from a vegetative state, offered to help with Meimei's recovery for free in late 2014. She produced an audio recording consisting of sounds that captured Meimei's daily routines before the tragic accident – door knocks in the morning from her mom to wake her up, barking from her pet dog, chattering among friends, and played it repeatedly for Meimei to spark her consciousness.

The art program, for the first time, managed to get Meimei's close surroundings involved. Her former classmates and friends shared anecdotes of Meimei's school year; her close relatives recounted memories of Meimei in her childhood. Acquaintance from different walks of life pitched in to share their bits of memory of Meimei.

"For too long, we as a society have been counting on solely the patients and the doctors to bring back the life of vegetative patients," said Wu. "But to really maximize the chances of reviving the patients, you need the unified efforts from all parts of society."

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03

苏醒，只是一切的开始

面对着眼前依然目光涣散的女儿，陈淑芳很难接受这就是“醒”了——

“我以为就像电视里演得那样，醒来之后就都好了。”

陈淑芳的日记本里写满了照顾美美的日程

然而，在医学意义上，“醒”仅仅意味着患者从植物状态进入了微意识状态，能够对诸如“睁眼闭眼”、“抬手”等外界指令做出响应。

他们与亲人之间曾经紧闭的大门，现在出现了一道透光的缝隙，但这门远未全开——

植物人苏醒后，通常会经历一个从重度残疾、中度残疾，再到轻度残疾的过程，才能逐渐恢复正常。昏迷的时间越久，残疾的程度也越重。

换句话说，“醒来”之后，等待着他们的，是漫长的复健过程。

美美苏醒后，智力回到了幼儿园水平。她不得不开始重新认识自己，重新认识世界。

但对陈淑芳来说，女儿能获得第二次生命已经是恩赐。她做好了心理准备，帮助女儿从头再来。

她找来奶瓶，重新教美美喝水。等美美的吞咽功能慢慢恢复，学会用吸管吮吸后，已经过去了一年多。

她买来给幼儿园小朋友学算术的彩色数字卡片，教美美做十以内的加减法。

十以内的算术学会了之后，她又教美美用当时仅能活动的一只手比两位数——

“比如‘19’，我就教她先用一只手比‘1’，再比‘9’。”

美美第一次发出声音叫“妈”的那天，陈淑芳掉眼泪了。

6年多的照顾，2000多个日日夜夜的陪伴，无数次的崩溃与重新振作，陈淑芳现在只是笑着说——

“我在家里做护工、做保姆、做治疗师……妈妈这个角色把这些全都包了。”

如今，美美仍在学习和康复中，陈淑芳坦言——

“年纪大了，有点力不从心了。每次推美美出去回来，我要在沙发上坐好久才有力气去做别的事情。有的时候一个简单的动作可以教她好几年……她膝盖和腿的力量总是练不出来，我有点不知道怎么办才好。如果她能把腿的力量练出来，哪怕是拄着拐杖走路，我已经很满足了。不要求她健步如飞，能拄着拐杖就有希望。”

而体力的消耗只是一部分。更多的时候，陈淑芳需要不断调节自己的心理状态，让自己有一颗强大的心。

比如，她到现在也不习惯在医院吃饭，总是一个人跑到医院楼下的小花园吃，“虽然也吃不了几口。”

回到家里，她就打理阳台上的花花草草——“把对美美的那份爱分一点出来，分散一下注意力。”

美美出事前，陈淑芳常常和身边的姐妹们一起出去旅游。那时，美美有自己的生活圈，“不爱跟我们一起”。现在，她只希望和美美一起出游的那一天能快点到来。

尽管复健这条路看起来没有终点，但陈淑芳决定陪着女儿一直走下去。

Though Meimei has regained her consciousness, Chen is still her rock as the girl has difficulties speaking and walking. Every day, Chen helps her daughter get dressed, wipes her face, swabs her mouth, feeds her meals. She understood that what Meimei felt most keenly was her absence, so every time Meimei moved from one hospital to the other, she would rent a tiny condo near the hospital. In the past six years, she has moved four times.

The family is not financially well-off, and the medical treatment has pushed the family to the verge of bankruptcy. Cost per day for staying at the hospital, not even the best ones, but an average rehabilitation hospital, is at least 1,000 yuan per day, while Chen's pension is a meager 2,000 yuan per month. The family had lost its major source of income, and now had to count on relatives for paying Meimei's medical bills.

In a way, Chen's life was completely turned upside down by the accident. Before the accident struck the family, Chen loved travelling, but now spending most of her time taking care of Meimei, she found herself confined to her home and the hospital ward. She now trained herself to be a professional patient care assistant, learning physical therapy skills such as massage to help her daughter alleviate pains.

Despite the weariness and isolation, Chen never thought of giving up on her child for one single minute. The initial frustration and anger have now morphed into peace. She tried to arrange her own life and that of her daughter to resemble that of a normal family. She tried to organize weekend getaways to the beach – Meimei loves the sea – and takes her for a walk downstairs every day when few neighbors would notice.

Today, Meimei is able to speak slowly and deliberately. She cannot utter long sentences, but being able to utter full phrases is not a problem. Chen's dream, is that one day Meimei will be able to get rid of the wheelchair and walk on her own. "I cannot take care of her for her entire life," said Chen. "If she could walk one day, then she would truly be able to live on her own."

As her mom spoke, Meimei grinned. She had never thought of parting with her mom.

2015年，曾陷入植物人状态多年，后来又奇迹般地恢复意识的英国人马丁·皮斯托留斯（Martin Pistorius）在一段著名的TED演讲《心灵重回生活》中说——

“那时的自己，拥有着能感知一切的清醒意识，却被困在永远受到禁锢的身体中，犹如一个幽灵。”

据不完全统计，中国目前至少有50万植物人，且这个数字在以每年7万到10万的速度增长。

在他们之中，那些受到上天眷顾而醒来的，是幸运的极少数。

还有更多人，被判定为没有生存价值的“活死人”，静静躺在各类医院的病床上，又或是进入民办托养机构，还有的在家中慢慢走向死亡。

大多数时候，这个群体像枯草一般在社会的某个角落孤独地存在着。除了他们的亲人，没有人关心他们的过去，也没有人在意他们的未来。

但他们不是沉寂的幽灵，而是实实在在的生命。

就算已经微弱得再难泛起涟漪，每一个来到这世上的生命，也都值得被尊重。

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