What Long COVID Taught Me About Life (and Data) | Giorgia Lupi | TED

翻译人员: Shuyue Shao 校对人员: Manlin Fang

I know this sounds weird,

我知道这听起来很奇怪，

but the thing that I'm the most passionate about

但在这个世界上 最令我着迷的

in the entire world is data.

就是数据。

Really fun, right?

真的很有趣，对吧？

Well, I believe so.

的确，我坚信如此。

In my practice as a designer, I use data to tell stories.

作为一个设计师，我 通过数据来讲述故事。

Stories that are anchored in numbers,

很多故事背后蕴含着 细致的定性数据，

but actually that are mostly defined by small and qualitative data,

却被简化为一组数字。

which are the ones that can add all of the context and human nuances.

而定性数据，才能提供详尽的上下文 并展现人类个体之间的微妙差异。

But what does that mean?

但这句话到底 是什么意思？

Well, for example, when Google wanted to help people

比如说，当谷歌 想帮助人们了解

understand the threat of plastic pollution,

塑料污染的负面影响时，

we designed a micro site

我们设计了一个微型网站

where you can drop objects that you use every day,

在这个网站上，你可以将自己 日常使用的物品拖动到屏幕中央，

such as a disposable plastic bottle,

比如一次性塑料瓶，

and see how they break apart into microplastics

并观看它们如何分解成为

that pollute the sky and the ocean,

污染天空和海洋的微塑料

making this invisible layer tangible and visceral.

这个设计使得隐形的环境影响 在屏幕面前栩栩如生。

Or when the clothing company And Other Stories

或者，当服装公司 And Other Stories

wanted to communicate about inspiring women,

想要表达关于 女性力量的话题时，

I designed a fashion collection

我设计了一个时装系列，

where I showed the achievement of three amazing women scientists

在其中，我将三位 卓越的女性科学家的成就

into data patterns

转化为数据图案

that are woven and embroidered into the textiles.

并进一步编织、 绣制成为布料。

From a personal level, data is the lens that I use to make sense of the world.

从个人层面来看，数据 是我用来理解世界的方式。

I live and breathe data.

我在数据中生活， 甚至呼吸

And I love data so much

我痴迷于数据

that one time I used it as a writing language

以至于有一次 我将它作为一门写作语言

to get to know a new friend across the Atlantic.

用来认识 大洋彼岸的新朋友。

For one entire year,

整整一年来，

we've been writing to each other every week,

我们每周 都在互相写信，

but we didn't use a word of English.

我们并没有使用 英文进行交谈，

We spoke data,

而是通过数据，

sharing the most intimate details of our days and our personalities,

分享我们生活和 个性中最私密的部分，

such as all of the time that we complained and what it was about,

例如，我们感到不满的时间和原因，

and was it even necessary?

以及这些不满和 抱怨是否有必要

Or the "thank yous" that we said and what they were for.

又或者是我们说的 “谢谢” 和我们所感恩的对象

And even the time that we argued with our partners.

甚至是我们与各自伴侣 进行争论的时刻。

And right now, this full set of 52 and 52 postcards

而现在，这全套 52 - 52 张明信片

happily lives in the permanent collection of the Museum of Modern Art,

最终被永久收藏于 现代艺术博物馆中，

which is quite nice.

这是这个作品 最好的结局。

Thank you.

谢谢。

(Applause)

（掌声）

But this mission took on a new meaning when I became sick with a chronic illness.

而当我患上慢性病时， 我的使命有了新的意义——

I have been living with long COVID for the past four years.

在过去的四年里，我一直 被长期 COVID 所困扰。

Long COVID, if you're not familiar,

如果你不熟悉它， 长期 COVID

is an umbrella term that is used to describe

是一个总括性术语， 用来描述

the various health consequences that some of us have

我们当中一些人，在 急性 COVID 感染或再感染后

after an acute COVID infection or a COVID reinfection.

持续产生的各种健康影响。

And an infection-associated illness, like long COVID,

而这种感染引起的疾病， 例如长期 COVID，

can be mild and pass just in a few months,

可能是轻微的， 仅在几个月内就会消失，

but it can actually be extremely disabling

但同样，它可能导致 严重的身体机能损伤

and leave you unable to attend to the basic tasks of your life for years

让你在数年内 甚至更长久的时间里

or possibly indefinitely.

都无法完成 生活中的基本任务

Since my first COVID infection in 2020,

自从我在 2020 年 第一次感染 COVID 以来，

and especially so after my reinfection in 2022,

并且在2022年 再次感染后，

I started to develop constant, debilitating symptoms.

我的身体开始出现 持续衰弱的症状。

These are some pictures that I took at different points in my journey,

这是我在这一过程 不同时刻下拍摄的照片，

both at home and in the many medical settings that I've been at.

其中一些在家里拍摄，还有很多 摄于我去过的各个医疗机构里。

At my worst, I was completely housebound and at times fully bed-bound,

在最糟糕的时候，我完全 困在家里，有时甚至卧床不起，

and for a while I even had to stop working,

有一阵子我甚至 不得不停止工作，

which has been the hardest for me.

而这对我来说 是最难接受的。

As I started to develop these constant undiagnosed symptoms,

当我开始持续出现这些 无法确诊的症状时，

I, of course, turned to data.

毫不意外，我选择 从数据中寻求意义。

Tracking these symptoms every day,

我追踪自己每天的症状，

such as extreme fatigue, dizziness,

例如极度疲劳、头晕、

heart palpitation, tinnitus, head pressure, nerve pain and more.

心悸、耳鸣、 头部压力、神经痛等。

Tracking them together with the treatments that I was trying,

并且记录我正在尝试的 与之对应的治疗方法，

and then biometrics from my smart watch,

还有来自智能手表的生物识别信息，

what I was eating and what I was doing for the day,

包括一天内我的饮食， 以及我的日常活动，

such as walking or commuting

例如散步或通勤，

and even my level of stress.

甚至是我的压力水平。

And I did that to, hopefully, understand possible correlations

而我做的这一切，如果有可能， 将帮助我找到一些线索，

and help me and my doctors crack this mystery,

帮助我和我的医生 解开这个谜团，

but also to keep me sane in moments of deep suffering and uncertainty.

也是为了让自己在深陷痛苦 和不确定的同时保持理智。

And this is just a snapshot of four years of data collection.

而这些，只是四年间 数据收集的一个侧写。

At a certain point in my journey,

在我和疾病抗争的某个阶段，

I decided that I needed to share the data that I collected with people.

我觉得有必要与人们共享 我收集的数据。

In fact, when you read about long COVID,

实际上，当你阅读有关 长期 COVID 的文章时，

you usually read a list of symptoms that might make a healthy person think,

你通常会浏览到一系列的症状， 健康的人可能会对此不以为然：

"Well, I'm tired, too, after work."

“嗯，下班后我也会感到疲惫。”

Or "Well, I have headaches as well."

或者是—— “好吧，我也会头痛。”

Or "Yeah, after my last COVID infection

抑或是—— “对呀，在上一次感染 COVID 后，

I coughed for a couple of weeks,"

我也咳嗽了好几个星期。”

but I had never seen a thorough account of what it means to live

但我从未见过任何一种 记录有详尽地描述

with a debilitating condition like this one on a daily basis.

一个人每天都在衰弱的状态中 生活是怎样一种感觉

I had the opportunity to share my story with "The New York Times"

我有机会 以视觉专栏文章的形式

in the form of a visual op-ed.

与《纽约时报》分享我的故事。

When I used the language of paint and data visualization

在这次合作中，我使用绘画 和数据可视化语言

to share my journey day after day.

来分享我与疾病 日复一日纠缠的旅程。

The piece starts with warm-color brushstrokes that surround the title

在文章的开始， 暖色调的画迹围绕着标题：

"1,374 Days: My Life with Long COVID."

“ 1374 天：我与 长期 COVID 共存的日子”

As you start reading my essay in words,

当你开始阅读文字部分时

you see that the brushstrokes interact with the text.

你会看到笔触 与文字相互应和。

Understanding without a legend

即使没有图例 读者也能理解

that every different color brushstrokes represent different symptoms,

每种不同的笔触 代表着不同的症状，

and seeing that the symptoms aggregate by days.

并且可以看到每天 症状是如何层出不穷的。

As you keep reading a stack of different bloodwork and health tests,

当你接着阅读—— 一叠又一叠

血液和健康检查报告 堆积在屏幕上，

just a sample of the many I've had,

pile up on screen,

而这些，只不过是 我经历的冰山一角

and then a body figure appears and gets overwhelmed

然后一个身体的轮廓就会出现，

with all the different types of symptoms

并被我过去四年中

that I've experienced over the past four years.

经历的所有不同类型的症状所淹没

Here is where my spreadsheet, my data diary of sorts, shows up.

这里展示了我的电子表格， 也是我的各项数据的日记

And as you keep reading, you encounter additional symbols

而当你继续阅览时， 你会看到其他的符号，

for the hundreds of doctor's appointments,

标记着数百次的门诊预约，

the dozens of medications I've tried,

数十种我尝试过的药物，

my hospitalizations,

我的住院记录，

and ultimately, the tens of thousands of dollars

最后，我记录了我在治疗上的花费

that I spent for my care.

其金额高达数万美金。

And finally, you piece it all together

而当你读到 我这一年的视觉日历时

when you encounter a visual calendar of my year.

你可以逐渐拼凑出 我生活的全貌。

The calendar gets filled with all these brush strokes

所有这些笔触和症状

and the additional symptoms,

布满了整张日历，

and then you'll see an addition of handwritten annotation

你还可以看到 额外的手写注释

that can help you understand what was happening,

可以帮助你了解 过去发生了什么，

my vaccinations and my reinfections.

比如我的疫苗接种时间 和我的再感染的经历。

Ultimately, seeing that the calendar of our lives changed drastically

最终，你将看到 在我们感染COVID之后，

and dramatically after we got COVID.

我们的生活发生了 翻天覆地的变化。

Now, this is the detailed story of my journey,

不得不说， 这是我的详细旅程，

but I always wanted to include other people's experiences.

但我一直想将其他人的经历 也纳入我的叙述中。

And so I asked members of the long-COVID community

因此，我联络了 线上的长期 COVID 社区

that I connected with online to respond to one prompt.

并请求社区成员 填写一个提示——

“I hope that I will be able to ‘blank’ again.”

“我希望我能再次 ‘空白’ 。”

And at the end of the piece you read hundreds of heart-wrenching hopes

在文章的最后，你会读到 数百个令人心碎的愿望

from people that hope to be able to walk their dogs again,

他们希望能够 再次外出遛狗，

to play with their children,

和孩子一起玩耍，

to get back to work,

重返工作岗位，

and simply to live a life that is free and independent.

或仅仅是过上 自由和独立的生活。

Ultimately concluding with a collective

最后，这些愿望 都汇聚成一个——

hope that we can all start living with a blank canvas,

就是我们都能够 开始重新生活

full of possibility once again.

再次迎接 各种各样的可能性。

The response to the piece has been incredible.

公众对这篇文章的反应 出乎意料的热烈。

I received thousands of messages

我收到了成千上万条

from people sick with different chronic illnesses

来自不同 慢性病患者

and caregivers that, in different ways,

和看护者的信息，通过 不同的方式告诉我

told me that they finally feel seen,

他们终于感觉到被人看见了。

that they now have a visible,

他们现在有了一份 一目了然，绘声绘色的证据，

striking and emotional evidence to send to their loved ones

可以分享给亲人，

to make them understand what they're really going through.

让他们了解自己的真实经历。

Data.

数据——

If we look at them and represent them for what they are,

如果我们仔细审视数据 并试图表现它们的本质，

which are human and nuanced representations of our lives,

也就是我们人类本身以及 我们复杂而精妙的生活的缩写

data can move us profoundly.

那么数据就可以 深刻地影响我们。

Data can shape human narratives that can open conversations,

数据可以塑造人类的叙事， 从而开启对话，

convey empathy,

传递同理心，

and even connect people.

甚至可以将人们联系起来。

As for me, you might be asking,

至于我，你可能会问，

ten months after the publication of the essay,

在这篇文章发表 十个月之后，

I am doing much better.

我的身体状况 有了很大好转。

I am not cured, I still have limitations,

虽然我还没有痊愈， 日常活动还有局限，

a few setbacks,

有时也会 遇到一些挫折，

and I still take a fair amount of daily medication

并且我每天 仍然服用不少药物

and prescribed supplements.

和处方补充剂。

But I am starting to paint a different picture for myself.

但我开始为自己描绘 一幅全然不同的景象。

Now this is my own story.

现在这是关于 我自己的故事。

I am no medical expert,

需要声明的是， 我不是医学专家，

and I don't aim to speak for the long-COVID community at large.

我也没有要代表 长期 COVID 社区发声。

But here's what I have done.

但接下来是我为自己 做的一些事情。

Earlier this year, I decided to shift focus completely.

今年早些时候，我 决定完全转移关注点。

I started a new data collection,

我创建了一个新的数据集，

one that is only about progress,

一个关于“成长”的数据集，

where the categories in my spreadsheets are only what I have been able to do,

其中电子表格的类别都是 关于我力所能及的小事，

such as walking to the subway

比如步行去地铁站

or trying a few minutes of physical activity

或尝试进行几分钟

without any consequence.

低强度的运动

Of what I've been grateful for for the day,

同样，我记录了 每一天我所感激的事

such as a dinner out with my partner

比如和我的伴侣共进晚餐，

and the few moments that I felt really good in my body.

以及某些感觉我的身体 重新焕发能量的时刻。

I have retired my smart watch,

我已经停止使用智能手表，

which, truthfully, was giving me more bad than good news every day,

说实话，它每天给我带来 更多的坏消息而不是好消息，

and I have stopped logging and therefore paying constant attention

并且我停止记录 自己的健康状况

and giving meaning to my symptoms.

这也意味着我放弃关注 和解释自己的病情。

In the beginning it felt scary.

一开始，这感觉很可怕。

I felt almost naked,

当我放弃随时随刻 监控自己的身体状态后，

dropping this built habit of monitoring my body so closely,

我感觉自己 好像浑身赤裸，

something that gave me a semblance of control,

这种监控的习惯 曾经让我有一种掌控感，

and also something that made me who I have been for the past four years.

但也是这种习惯让我 成为了过去四年内的自己。

But I realized something.

但我意识到了一件事， 那就是——

That changing how I look at things also changes how things look.

当我改变看待事物的方式时， 这同样也改变了我所看到的现实。

Dropping the need to observe my symptoms and shifted my focus

当我不再观察自己的症状 并转移注意力时，

has reshaped the way that I see my journey.

我同样重塑了 看待旅程的方式。

Now, I want to make clear that the last thing that I want

在这里，我必须要指出， 我绝不是想让人们相信，

is for people to think that these illnesses are all in our heads,

这些疾病都只存在 在我们的脑海中，

or that positive thinking alone can fix them.

或主张，仅通过积极的思考 就能治愈疾病。

That is simply not true.

这些都不是真的。

This new approach is part of a program

这种切换视角的方法来自于 一个名为“大脑再训练”的计划，

based on solid neuroscience called brain retraining.

该计划有着神经科学方面 确切的理论依据。

Every day, like thousands of other people,

像其他成千上万的人一样，

I've been putting in hours to retrain my brain

我每天都投入几个小时 来重新训练我的大脑，

to react differently to symptoms and triggers.

使其对症状和触发因素 做出新的反馈。

And this approach followed the principle of neuroplasticity,

这种方法遵循 了神经可塑性原理，

which is our brain's amazing ability to rewire itself,

该原理阐述了我们大脑 自我重构的神奇能力，

something that can help reduce symptoms

这种能力可以 帮助减轻病症

and improve the life of people with chronic illnesses.

并改善慢性病 患者的生活。

This new approach and this new data collection

这种新方法 和我的新数据集

have been giving me hope,

给了我希望，

something that I have missed for a long, long time.

长时间以来，我已经 遗失了这种希望。

Almost a year ago,

差不多一年前，

at the end of my essay, I also shared my hope at the time.

在我文章的最后， 我也分享了当时的愿望。

It reads,

上面写着——

"I hope that I will be able to take walks again, to snowboard,

“我希望我能 再次散步，去滑雪，”

to sit at a restaurant and eat with my friends,

“坐在餐厅 和朋友一起吃饭，”

to travel to my home country,

“回到我的国家旅行，”

to be pain-free and simply enjoy a day in the sun

“轻轻松松，无忧无虑，”

without symptoms or fear.

“享受阳光下的一天。”

I hope that one day I will get back to the person that I used to be."

“我希望有一天我能 回到以前的样子。”

And I am happy to report that I am on track for most of that.

这里我要很高兴地说， 我大部分的愿望都成真了。

The snowboarding part is still a bit out there,

只有单板滑雪，还需要 等一段时间才能实现，

but I will be taking a plane to go to Italy, my home country,

但在这次演讲 结束的两天后，

for the first time in years in two days after this talk,

我将第一次乘飞机 回到我的祖国意大利，

which I'm really excited about.

对此我感到非常兴奋。

Thank you.

谢谢。

(Applause)

（掌声）

I believe there is a bigger message here.

我相信这里有更值得我们深思的信息。

The world is made of data.

即世界是由数据组成的。

But not the data that we produce with our smartphones or credit cards.

但我并不是指我们用智能手机或信用卡生成的数据。

It's made of the data that we decide to give our attention to

世界是由我们在任何既定时间内

at any given time.

所关注的数据组成。

Because what you choose to see shapes who you will become

因为你选择看到的东西 会塑造你所成为的样子，

and ultimately your entire world.

并最终塑造你的整个世界。

I believe in my recovery now.

我坚信自己将会康复。

It might be far away in time,

这个过程也许很漫长，

it might have bumps in the road,

也许并不顺利，

but firmly believing that it can happen and choosing to look at it over and over

但我坚信它会发生，

我会一次又一次地凝望未来，即使途中困难重重。

despite the obstacles

is the first step in that direction.

而这是实现未来的第一步。

I know that for sure now.

我敢肯定。

Thank you.

谢谢。

(Applause)

（掌声）