Yanwen’s blog

6/27/2026

Last week I came across the story of Liu Kaixin—a writer, artist, and advocate for people living with rare diseases. Ever since reading about her, I wanted to write something but kept putting it off.

This morning, during my usual run, I found myself thinking about her again. Without realizing it, I picked up the pace and ran much faster than usual, yet I didn't feel tired. Perhaps I was inspired by her story.

So I decided to write about her—not only to share her remarkable journey, but also the thoughts it has inspired in me.

What impresses me most was not merely the unimaginable suffering she has endured, but the extraordinary life she has built despite it.

Those of us blessed with good health often take for granted ordinary activities like breathing comfortably, sleeping through the night, or simply enjoying a good meal.

For Liu Kaixin, none of these are ordinary.

For more than a decade, she has been unable to eat normally. She survives through a feeding tube through her nose, with liquid nutrition slowly entering her body for twenty hours each day. She sleeps only about four hours a night. Her heart depends on a pacemaker. When she lies down to sleep, she requires a ventilator to help her breathe. Years of her illness has reduced her weight to as low as 29 kilograms.

A person in such circumstances could easily allow illness to define her. She refused.

Instead, here is what she's accomplished. She graduated from the Central Academy of Fine Arts in Beijing and later spent three years studying in the United States, earning a master's degree in Visual Arts Administration at New York University. It was during her time in America that genetic testing finally confirmed her diagnosis of Ehlers-Danlos syndrome (EDS). Throughout those years, she faced repeated hospitalizations and life-threatening medical crises entirely on her own.

After graduation, she joined a publicly listed AI company as the CEO's assistant, maintaining a demanding full-time job for more than seven years while undergoing continuous medical treatment and frequent hospital stays.

She later held her own art exhibition, To Be Continued, published two books—May You Live Freely and Boldly and May We Grow with Serenity—and has continued to paint, write, and speak publicly on behalf of people living with rare diseases.

Many of her paintings and much of her writing were completed in hospital rooms and intensive care units.

As I read her story, I couldn't help asking myself: Have we been wasting the ordinary life that she longs so desperately to have?

Good health is a blessing. But so many of us take this blessing for granted and failed to live a fulfilled life like her.

We Cannot Choose Our Circumstances, But We Can Choose Our Response

This is what moved me most about Liu Kaixin's story: her response to her circumstances. She wasn't able to choose the body she was born with, the rare disease she inherited. But she could choose how to respond. Instead of surrendering to despair and pessimism, she chose to live like a normal person: study, create, read, write, work, and contribute as fully as she could.

She once said: "The strength people see in me already exists within themselves. I am only a mirror."

"My greatest wish is not to become an inspirational figure. It's simply to be an ordinary person who doesn't have to live with severe pain every day."

She refuses to portray herself as a hero who conquered illness. She refuses to romanticize suffering.

Most of Us Have Been Dealt Better Cards

Life deals each of us a different hand. What ultimately determines the course of our lives is not the hand we are dealt, but how we choose to play it.

Many people enjoy good health yet slowly let the time slip away. We keep telling ourselves there will always be tomorrow. Another year passes. Then another.

Liu Kaixin has never had the luxury of assuming there will always be a tomorrow. She experiences everyday the fragility of life. That is precisely why she uses each day so preciously.

What She Taught Me

She reminded me that I still have lungs that breathe freely, legs that can run, and a body far healthier than hers. If she can create such a meaningful life despite her limitations, I have even less excuse to waste the gifts I have been given.

Life deals us the cards. Our choices determine how we play the hand.

她32岁，只有29公斤，却活出了许多人一辈子都达不到的高度。

上个星期，我读到了作家、艺术家、罕见病患者刘开心的故事。读完之后，一直想写点什么，却迟迟没有动笔。

今天早上慢跑时，我又想起了她。不知不觉中，脚步越来越快，每公里竟然比平时快了三分钟，却一点也不觉得累。也许因为我感到了一种无形的鼓励。我决定把她的故事写下来，也写下她带给我的思考。

让我难忘的不只是她经历了怎样的疾病折磨，而是她在这样的身体条件下，竟然活出了如此的灿烂辉煌。

我们这些拥有"正常身体"的人，常常把顺畅的呼吸、安稳的睡眠、一顿美食，当作理所当然。而刘开心已经十多年无法正常进食，只能依靠鼻饲营养管维持生命。每天二十多个小时，营养液缓慢滴入她的肠道；她一天只能睡四个小时；心脏依靠起搏器维持；躺下睡觉还需要呼吸机辅助。长期营养不良，她的体重低到二十九公斤。

这样的人，最容易被疾病定义。可是，她拒绝如此定义。

相反，她毕业于中央美术学院；后来独自赴美留学三年，在纽约大学攻读硕士；在美国通过基因检测确诊EDS，独自完成留学、学业、海外工作，全程独自应对频繁病危住院。毕业后入职上市AI企业，担任CEO助理，拥有稳定高薪全职工作，一边长期住院治疗一边坚持全职工作7年半。

她举办了个人画展《待叙》；出版了《愿你可以自在张扬》和《我们可以坦然生长》两本书；长期坚持绘画、写作和公开演讲，为罕见病患者发声。

她的不少作品，甚至是在病房和ICU里完成的。

读到这里，我忍不住想到：我们是不是一直在挥霍那些她求之不得的"平常生活"？

拥有健康的身体，是一种幸运。然而，仅有幸运，并不意味着一定能活出精彩的人生。

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命运无法选择，但人生可以选择

刘开心的故事，最打动我的并不是疾病，而是选择。

她无法选择自己的身体，无法选择是否患上罕见病，无法选择每天都要面对各种疼痛。

但是，她可以选择如何面对这一切。她没有让疾病束缚自己，没有抱怨命运。她选择像正常人那样学习、创作、阅读、写作，工作、爱这个世界。

她曾说："别人从我身上看到的力量，本就是他们自己拥有的，我只是一面镜子。"

"我最大的愿望，不是成为励志人物，而是做一个不用每天忍受剧痛的普通人。"

她拒绝把自己塑造成"战胜病魔"的英雄，拒绝歌颂苦难。

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我们手里的牌，其实比她好得多

命运给每个人发了一副牌。刘开心拿到的，也许是许多人都不愿接受的一副牌。而我们大多数人，拿到的牌显然比她好得多。

可是，真正决定人生的，不是拿到什么牌，而是如何打这副牌。

很多人拥有健康，却把时间一点一点消磨掉。总觉得来日方长。结果一年又一年过去。

刘开心却没有这样的"以后"。她知道生命有限，所以更加认真地使用每一天。

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她真正教会我的

她让我重新理解了生命。生命的价值，并不完全取决于拥有怎样的身体，而更多取决于我们如何使用已经拥有的一切。

真正决定一个人能走多远的，往往不是命运，而是每天不断做出的选择。

今天早上，我为什么会跑得比平时快？我想，并不是因为刘开心给了我力量。

也许，她只是让我重新看见了自己，让我意识到，自己还有可以自由呼吸的肺，可以奔跑的双腿，可以思考的大脑，还有远比她幸运得多的身体。既然如此，就更没有理由虚度光阴。

命运决定了我们拿到什么牌，而选择决定了我们把这副牌打成什么样的人生。

6/22/2026

Yesterday was Father's Day. I had planned to write something for my son, but I wasn't able to finish it in time. So here it is, one day late. Fortunately, it is not really late at all. Next month, he will become a father himself.

I have heard countless complaints about the hardships of raising a child. I also understand the anxiety that my son and his wife are feeling as they prepare to welcome their first child into the world. Over the past few months, I have tried to reassure them whenever I could.

Most people think of parenthood as a long series of challenges: sleep deprivation with a crying baby, endless diaper changes, the terrible twos, and eventually the dreadful teenage years.

All those things are real issues. But today I find myself thinking about something different.

The chores, frustrations, sleepless nights and worries do not disappear. But if we can look beyond them and see the larger picture and in a larger time frame, everything changes.

Looking back, I wish someone had told me this when I first became a parent and I could enjoy the process. In fact, I wish I had understood it myself. That is why I feel compelled to share it with my son.

When you were busy growing up, rushing toward adulthood, you probably did not fully experience your own childhood. Like most of us, you were always moving on to the next stage of life.

Fatherhood offers endless opportunities.

It gives you the opportunity to rediscover the wonder, curiosity, carefree and playfulness that adulthood often pushes aside. Through your child, you may find yourself sitting on the floor building blocks, laughing at things that make no sense, and seeing the world again through your child's eyes.

I am not writing to teach you how to be a good father. You will find your own way.

What I hope is that you allow your child to teach you something as well: how to relax and play again, how to be fully present, how to be silly without embarrassment, and how to rediscover a part of yourself that may have been forgotten along the way.

Re-live your childhood with your child, that may turn out to be one of the greatest gifts of fatherhood.

4月8日

晚抵达上海。这是我第一次从上海入境。海关工作人员十分热情，还耐心教我们如何使用他们的APP办理入关手续。

出来后准备打网约车。第一次成功下单，却发现给错了上车地点。我们在浦东国际机场，订单却显示在虹桥机场。司机当时就在虹桥附近，难怪车费显示要两百多元。只好取消订单。第二次下单倒是没有定位错误，但等了十几分钟，司机一直没有动静。我打电话联系，对方也不接，只好再次取消。第三次叫车，又等了十几分钟，才终于坐上车离开机场。

在机场电梯里，我遇到了三个年轻美貌的姑娘。她们进来时，其中一个有些不耐烦地对我说：“你往里走。” 电梯到达一层时，站在后面的另一位姑娘又说：“闪开路！”这么多年下来，我早已习惯别人称呼我“您”、“阿姨”或者“夏大姐”。乍一听这样的说话方式，一时竟有些不太适应。

看着周围先进的基础设施、现代化的机场，以及这些青春靓丽的年轻人，却又感受到这样的待人方式，总觉得两者之间似乎存在着某种落差。经济和科技的发展并不必然带来文明素养的同步提升，这一点，让我印象深刻。

4月9日

先去上海火车站认路，然后到人民广场一带逛逛。我们买了都市观光车（City Sightseeing）的车票，每人60元，24小时内可以不限次数乘坐观光双层巴士。

我们特意坐在上层第一排的位置，居高临下，视野开阔，看得更远、更清楚，也方便拍照。只是兴奋劲儿没持续多久，便开始犯困，不知不觉打起了盹儿。一睁眼，发现已经快到下车的地方了，大概还是时差在作怪。

地铁里人很多。我们一路站着，倒也无所谓。途中，一位银发老太太走到一名坐着的年轻女子面前，说自己腿脚不好，能不能让个座。年轻女子伸手指了指另一处，示意那边有老年人专座。老太太则指着她头顶的标识说：“这里也是爱心专座。” 那名年轻女子看到后有些不情愿地站起来让出了座位。

回程时又出了点小差错。导航时，我们误用了同一家旅馆另一家分店的地址，结果搭错了地铁。出站后才发现跑到了虹桥，而我们应该去的是静安区。

4月10日

今天费了不少功夫，我们终于找到了“上海公路零公里标志”——国道318的起点。它位于人民广场中心，人民大道上，正处在人民广场旗杆与上海博物馆中轴线的延长线上。

昨天我们专程到人民广场寻找这个标志，一路不停向路人打听，却几乎没人知道它在哪里。今天再次经过时，我们依然没有发现，于是又向附近的一位工作人员询问。他指着地面说：“那个像井盖一样的东西就是。”

走近一看，果然如此。它与地面齐平，看上去就像一个普通井盖，难怪这么多人经过却不知道它的存在。谁能想到，中国最长国道318的起点，竟然低调得像个井盖。

昨天下午买的都市观光车车票在24小时内可以无限次乘坐，所以今天上午我们又去搭车观光。这一次来到了浦东。

4月11日

早起出门到菜市场买些水果。上午我们把行李寄存在酒店，打车去外滩。司机师傅是九江人，来上海刚一个月，自己一人，老婆和两个孩子在家里，孩子都上初一和初二了，说佩服我们自己出来旅游，他还不知道如何上地铁。

我们在外滩隔江看到浦东的高楼林立，路上有不少人在锻炼身体，让我想起布鲁克林桥公园里跑步的年轻人。回来沿着中山东路观赏路西的优秀历史建筑，虽然有上百年历史了，但是质量还是优秀。现在这些楼多是银行办公楼。路上看到一对年长夫妇也在观赏历史建筑。我凑上去和他们聊天得知他们已经年过80，当地人，出来散步。我们走到南京路步行街。大概因为是周末，游客很多。

我们进了一个大商店，想找个地方坐下来喝杯咖啡，休息一下。在一家卖木梳的店铺，我看到几个外国人在算计着买木梳子。一位秃顶顾客说要给自己的太太买。老板不懂英语，示意让他自己用。我告诉老板，他是给太太买。老板马上推荐另一把，价钱680元。一把木梳子要这么贵，我用英语告诉游客，太贵了，别的地方最多几十元。他们没有就买。

晚上6点半从上海火车站出发到拉萨。候机楼里等Z164车次的人很多，和人们聊才知道有许多人不是去拉萨的。有一对夫妇是由儿子安排去拉萨旅游，女方退休三年，不到60岁。他们去西藏9天二人共9千元。还有几个刚退休的去拉萨的游客。他们都是坐硬卧。

我们乘的软卧，四人一室。我们都是下铺，上铺是一对父女，父亲60岁，年底退休，女儿25岁，尚未工作。他们是上海人，父亲说，女儿这一代不讲上海话了，都是普通话，如同苏州孩子不讲苏州话。让我想起去年在九寨沟，那里的阿坝藏民中的年轻人也是不再讲藏语了。同样的，在美国的华二代中能讲中文的也不多了。

父亲陪女儿去西藏旅游。他们这一趟七天六夜，全包每人两千多元。父亲说，如果这次玩的好，明年再来。如果高山反应大，马上回上海，因为他有三高，担心自己身体。很幸运我们遇到了一位健谈，乐于分享的人。

4/12，火车上有人推销行天源，电解质运动饮料。我买了些。晚7点到西宁站，所有人换车，乘上有氧车。火车上一个小伙子说，拉萨旅游没有淡季，只有旺季和更旺季。

4/13, 凌晨4点多醒来，肚子饿的很，我的血氧量降到74%，头微痛。赶紧吃了两粒葡萄糖。早饭后服下一粒止痛片。吸氧后恢复上80%。海拔高，太阳格外耀眼，幸亏我们带了墨镜。一片无边的白色大地，风中传出了苍老的声音，无人大地的寂静。

下午到达拉萨。从火车站到旅馆，虽然有车接送，但是还有一些耗氧活动，从火车站走到停车场，从停车场又到旅馆，司机拖着行李在前面走，我硬撑着身体在后面走。当时真想一屁股坐地上不走了，到旅馆后我开始呕吐，先在大厅吐，回到房间又吐。夜里起来又吐两次，不敢吃东西，只喝水。最后吐出的都是水。和搭话都有气无力的，感觉说话都吐耗氧了。

4/14，

夜里没休息好，头疼，止痛片不能解脱，睡不着，自己网上寻找答案，想知道自己的高反是轻度还是重度，想要个明确的诊断。如果是重度，病情会瞬间急转直下，有生命危险。或者会留下后遗症。自己越查越害怕。我决定先联系一下我们旅游团的联系人Zoe，发完短信，我像等着救命稻草一样等待回话。

--5:40 AM，我问Zoe，@Zoe Leung Zoe，咱们团里有医生吗？我从昨天开始头疼厉害，呕吐几次，为保险起间，我想听一下医生怎么说

--7:45 AM @Zoe Leung Zoe，我一直感觉不适。我们决定今天离开拉萨到成都。咱们今天去机场接送的车是几点？

--8:37 AM @Zoe Leung 我们已经订了机票，下午3点的飞机。

我决定今天离开拉萨，第一，因为我当时感觉不适，头疼，不知道这种情况是暂时的，还是今后几天都会这样，也担心几天下来，这种头疼是否会永久下去，心里一团疑问。第二，我向旅游团的人求助，知道他们是有经验的。等到8点了，我担心不及时订机票，怕今天离不开了。第三，最重要的是，我衡量一下，根据我目前所能依靠的资源和信息，高反变化快，我不想冒这个险。我感觉谁都靠不住，我在损失14,760元和冒险永久损伤身体之间很轻松地做出了决定，钱买不来好身体。留得青山在最重要。

--9:03 AM Zoe答, “不好意思才看到，您这边已经确定要今天离开吗？好的，我这边先安排一位工作人员过来看看你们”

大概11点多，旅游团派一个工作人员来了。我们来之前交了三分之一的押金，他来收剩余的钱。然后，问了我一些问题，查了我的血氧，血氧62%，看了我的眼底，说，“问题不大，吸吸氧就行。” 

的确如此，为了避免自己对氧气产生依赖性，我在火车上很少吸氧了，下了车后突然进入高海拔，加上一下子硬撑着做了许多耗氧活动，我一直没吸氧。可能我开头不应该盲目地拒绝吸氧。但是，听了他的话，我一阵子不高兴，心想，早知道问题不大，我就不急着买机票了。我五点多联系你们，迟迟没人回话，让我觉得，来到这里，真出点事，谁都靠不住了。

在去机场的路上，他们告诉我，真正重度高反的是要不停地吸医用氧，一停止吸氧脸就变紫，不能正常跟人对话。我一直没用医用氧。相比之下，我意识到了，我算是轻度高反。

司机的普通话讲的很好，和他聊天得知，他们这里的孩子们从小开始学三种语言，在家说藏语，在学校学普通话和英语。

在拉萨机场遇到一对北京来的游客，和他们聊天。他们5号到拉萨。女方说她刚到拉萨时也有严重高反，呕吐，像过不去了那样的难受。吸氧后马上恢复了，吸的是医用氧，说“你应该坚持一下。别急着走，来都来了。”可能她说的对。实际上，到现在下午2点了，我今天早上起来后一直没有呕吐了，早上也能吃些早饭，而且现在竟然有气力和别人聊天，和昨天的有气无力状况不能比。

4/15，成都，晚上孩子们微信视频我们，问我在拉萨高反是否恢复。我告诉他们，我已经完全恢复了，健康如过去。当我讲述这个过程和我如何做出立即离开拉萨的决定时，他们都支持我。实际上，我现在最后悔的是失去了一次去拉萨的机会。心里最难受的是想到我这辈子可能永远去不了西藏了。

如果不离开拉萨，我们今天会去布达拉宫，明天会去羊湖。

--4/14 参观拉萨最⼤的寺庙哲蚌寺，并在哲蚌寺寺庙餐厅⽤午餐；下午前往⾊拉寺参观，观看僧侣辩经活动。

--4/15 参观世界上最⾼的宫殿布达拉宫，在宫殿下的⻰王潭公园参加当地藏族⼈的⺠俗活动；参观⼤昭寺、转⼋廓街转经道、⾛进甜茶馆体验藏族社交⽂化。

--4/16 驱⻋来到⽺湖鲁⽇拉观景台，欣赏雪⼭、岛屿林⽴的⽺湖全景，延湖岸线欣赏⽺湖不同⻆度的⻛景， 在湖边享⽤午餐，度过悠闲的湖岸时光。后经⽺湖岗巴拉⼭观景台返回拉萨。

回想一下，我当时可以做两件事：一是吸氧，二是去医院。不清楚我为什么没有坚持做这两件事？可能脑缺氧，不够清醒了吧。在那片人生地不熟的高地，举目无亲，加剧了内心的恐惧，最终可能恐惧替我做了决定。

”花钱买罪受”—途中大部分时间实实在在体验着这句真理。

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4/15，在成都，在观光车上，一位来自江西南昌的女子，70年出生，来成都帮儿子带小孩，孩子今年6月出生。她的儿子30岁，在北京工作了8年，后到成都工作，说北京房子太贵。南昌女子说普通话的口音很熟悉，很善谈。

在成都一家书店，我想找几本中文的幼儿读物，类似硬质的picture books，我让工作人员给我推荐几本。他推荐有教英文字的书，说现在家长都要小孩从小双语教育。我心想，英语还是留给他爸妈了。我只管中文。几年后，他的英文会比我地道的多。

4/16，成都人民公园，人多，有游客，也有本地人来这儿锻炼身体。花很长时间找一个百货商店，想卖一把水果刀。

路上遇到一家药店前，它的门前有个打牌说是给做免费测血压，血糖和血脂。他们用测试方法是让人手握一个金属棒子，测你的血糖和血脂。我觉得既然是免费的义务服务，不妨去做一下，也是出于好奇心，没见过这种测试法。美国也有这种义务服务。他诊断我们都要补维生素AD，之后竭力给我们推销东西。抵抗不了我们就买了。之后发现上当了。以后小心。

4/17，滴滴打车到成都南站，司机很健谈，50多岁，二个儿子。他曾经走南闯北到大连，新疆等地打工。四川话你细心听，还是能懂的，不像上海话。我发现藏民的普通话讲的最好，比维族人讲的好，也比成都人讲的好。今天我们到乘高铁到昆明。

4/18，乘高铁从昆明到大理市。到了昆明站我们才从网上购高铁票，票迟迟没出，人多，时间紧，整个过程紧张焦急。以后最好提前买好票。到了大理后，乘大巴到大理古城附近，没有能找到出租车，自己拖行李到酒店。累！

4/19，我们花¥256，两人的游洱海一天，第一站是洱海生态廊桥，第二站是喜州古城，后来去倪家大院午饭，遇到义诊，第三站是双廊古镇，乘景区游览车，来回车票¥30，第四站是海东地区。同团游中遇到一个从安徽来的姑娘，两个结伴从安徽来的姑娘，两个结伴从青皇岛来的姑娘，还有从哈尔滨来的退休女士。导游是白族人，说一口非常好的普通话，30出头，两个孩子的妈妈。

4/20，从大理回昆明，下午去滇池，绿色的水。滇池比成都人民公园好。高铁途中遇到四个从广西贺州到大理旅游的姑娘。

4/21，上午昆明翠湖公园，下午从昆明到贵阳。

4/22，贵州省博物馆，青岩古镇。读介绍，“青岩古镇，为贵州四大古镇之一，古镇依山傍水而建，原为军事要塞，至今有着600多年的历史，古镇如今保留着众多明清古建筑，行走在青石板路上，街道两旁是高低错落的木房子，感受贵阳厚重的古韵风情。” 到那一看，和别的地方的古镇，大同小异。

4/23，观山湖公园，从贵阳到遵义。

4/24，参观遵义会议会址。从遵义到重庆

4/25，乘观光大巴逛了一圈，乘2号轻轨逛

4/26，解放碑，重庆三峡博物馆，乘2号轻轨到李子坝看轻轨穿楼。

4/27，上午找咳嗽药，下午游轮看长江三峡，注册时额外付了200元房间由2层升到3层。晚上在六楼上遇到一个从甘肃来的游客，聊天中得知他们买得同样的游轮，每人各不到两千元。而我们每人2680元。当初购票时，他们说是豪华游轮，现在发现言过其实了。

4/28，早饭一般般。上午船到丰都鬼城，我们下船跟着一个导游，里面充满了人造的传说中的鬼神形象。导游边走边讲传说故事，感觉导游在编故事哄小孩。

4/29，奉节县，夔门。奉节白帝城，自费景点，每人252元，由导游带上岸。我们预料景点大多是人造景观，不会有千年前的古迹，意义不大，没有购票。前台服务员告诉我，没有消费不能上岸。我问，我们自己上岸走走，我们合同上没有这样写。她改口说，可以上岸，要等到9点。

和隔壁成都邻居聊天，得知她们是在抖音上买的票，加了升舱费1700元，说有的人比她们还便宜。

船上游客九成是老年人，大部分是南方。他们中多数是守规矩的，在排队时总有几个白发老人忽视长队，直接涌上，还有一个老人在后用力推我，让我想起网上看到的一句话—”不是老人变坏，而是坏人变老。”大部分人在公共场合大声喧哗。（看琵琶行）。

在船遇到一队九人，从沈阳来。我基本上能辨别出从南方还是北方来的人。北方人虽然有口音，我还是能懂。南方人说话如同讲外语。

4/30， 早上到宜昌，下船跟着导游去秭归看三峡大坝。人多，导游走的快，我很怕掉队，急忙赶路，眼睛一直盯着导游，不敢四处观景。转了一大圈，疲累，人多嘈杂，感觉什么都没听到或看到，准备回去上网细读一下。

5/1，宜昌游葛洲坝，夷陵广场。宜昌因为有一江两坝而兴盛。路上遇到一个山西人，老孙，69岁，爱聊天，曾经在山西煤矿工作，45岁内退，在这儿住了十几年。他带我们去看船通过葛洲坝船闸，从下游升船到上游。葛洲坝扩大工程已经开始。

下午去三游洞。从三游洞坐车回来一路顺利，下车后导航到达酒店的另一个分店，后又打车到我们的酒店。这是第二次出类似的错。

5/2，早饭后打车去机场，回京。坐我右边同机去北京的两个年轻人是宜昌人去北京旅游，女的手抱着一台苹果电脑，男的一直看手机，两人之间保持沉默。

。。。。。。。。。。。。。。。。。。

我没有专找网红点打卡，各地古镇，大同小异，皆是商业模式，缺少新鲜感和独特性，令人视觉疲劳。

与曼哈顿相比，中国大城市更人性化，大众化，共厕方便，可以品尝各地特色的风味美食，价钱便宜。

平日在家生活很有规律，每天锻炼身体，读写，练琴，每周一次义工，周末聚会。旅行打断了这种规律，走出舒适区，与熟悉的一切拉开了距离，不断接触新事物、进入不确定的状态，扩大可能性，创造了许多思想碰撞的材料。

--在为未来争取更多时间和空间。

I read a disturbing news story today about a 13-year-old girl who nearly lost her life after heart surgery. According to a lawsuit filed by her parents, the crisis began when a prosthetic heart valve was implanted upside down during surgery.

The girl underwent open-heart surgery at Oregon Health & Science University (OHSU) in Portland in August 2025 to receive a new heart valve. Her parents have since filed a $17 million lawsuit against OHSU and cardiac surgeon Dr. Ashok Muralidaran.

After the operation, her heart was unable to function, and she was placed on ECMO for 18 days, a form of life support that temporarily takes over the work of the heart and lungs. OHSU doctors told the family that the surgery had gone well and attributed her worsening condition to postoperative complications rather than a surgical error.

Over the following weeks, the girl underwent additional procedures and exploratory surgeries as doctors tried to determine why she was not improving.

At one point, doctors warned her family that she was near death and discussed end-of-life decisions, including organ donation. The family was also told that she might require an artificial heart or even a heart transplant.

The turning point came when she was transferred to Seattle Children's Hospital. OHSU physicians had warned that the transfer itself could be fatal. However, shortly after her arrival, surgeons at Seattle Children's discovered that the prosthetic valve had been implanted upside down, obstructing blood flow through her heart. They corrected the problem, and her condition improved rapidly, allowing her to be removed from ECMO support.

What makes this case especially striking is the allegation that the source of the problem went unrecognized for weeks despite the girl's severe deterioration. It was only after her transfer that another hospital identified and corrected the valve-positioning error, a step that ultimately saved her young life.

While medical accidents do occur and complications can arise even when surgery is performed correctly, there are still important lessons that ordinary people can learn from this case.

First, when recovery is not progressing as expected, keep asking WHY.

When a patient's condition remains unexplained or continues to deteriorate, patients and their families should continue asking questions. What exactly is causing the problem? What possible causes have already been ruled out? What tests, scans, or other evidence support the current diagnosis? Are there alternative explanations?

Patients and families do not need medical training to ask for a clear explanation of what doctors believe is happening and why.

Second, a second opinion can be lifesaving.

One of the most striking aspects of this case is that the alleged error was identified only after the patient was transferred to another hospital.

For some people, seeking a second opinion may feel like a sign of distrust or even seem offensive to the treating physician. In reality, it is often an important safeguard, particularly when the diagnosis is uncertain, treatment is not working as expected, doctors disagree, or the patient's condition continues to worsen without a clear explanation.

Third, do not be blinded by reputation, authority, or expertise.

Highly respected hospitals and highly trained physicians generally provide excellent care. However, medicine is practiced by human beings, and human beings make mistakes.

A hospital's reputation does not eliminate the possibility of error. Patients should respect expertise without assuming that expertise is infallible.

Fourth, family members play a critical role in patient care.

Critically ill patients are often unable to advocate for themselves. In such situations, family members may need to ask questions, request medical records, seek clarification, and push for additional evaluations when necessary.

The most effective advocates are not confrontational. They are persistent, attentive, and well informed.

Fifth, keep detailed records.

During a prolonged hospitalization, families should maintain a timeline of events, test results, procedures performed, medications given, and questions asked along with the answers received.

Such records can help families understand what is happening, improve communication with healthcare providers, facilitate outside consultations, and provide important documentation if problems later arise.

Sixth, learn to distinguish between complications and medical errors.

Not every unexpected outcome should automatically be dismissed as "just a complication." Patients and families should remain open to both possibilities and continue seeking answers when the explanation does not seem to fit the facts.

Finally, maintain a healthy degree of skepticism.

We should not assume that doctors are always right. Trust should be accompanied by questions, verification, and active involvement in one's own care.

The broader lesson is not simply that doctors can make mistakes. The more practical one is that do your own homework when your life is involved, and especially when a serious medical problem remains unexplained, you should feel empowered to seek additional opinions and perspectives rather than assuming that the current explanation is necessarily complete, correct, and final.