만성 질환 내러티브에서 데이터의 힘

데이터는 인간의 내러티브를 형성하고 희망을 키우며 개인의 경험을 강력한 회복탄력성 스토리로 변화시킵니다.

### 개인 내러티브와 치유에서 데이터의 혁신적 힘
* 📊 데이터는 단순한 숫자가 아니라 **플라스틱 오염에 대한 마이크로사이트나 여성 과학자에게 영감을 받은 패션 컬렉션**과 같은 프로젝트에서 볼 수 있듯이 맥락과 인간적인 뉘앙스를 더한 스토리를 전달합니다.
* 🌍 데이터에 대한 연사의 열정은 개인적인 경험으로까지 확장되어, **대서양 건너편에 있는 친구와 1년 동안 데이터로만 서신을 주고받은 것**이 그 예입니다.
* 💔 하지만 이 여정은 화자가 일상 생활에 심각한 영향을 미칠 수 있는 **쇠약성 질환인 코로나19에 오래 걸리면서 전환점**을 맞이했습니다.
* 🩺 이에 대처하기 위해 연사는 **증상, 치료법, 일상 활동을 꼼꼼하게 추적**하여 종합적인 데이터 일기를 작성하여 상관관계를 찾고 고통 속에서도 정신력을 유지했습니다.
* 📰 이 연사는 데이터 시각화를 사용하여 **1,374일 동안 코로나19와 함께 생활한 경험**을 뉴욕 타임즈에 기고하여 만성 질환자 커뮤니티의 많은 공감을 얻었습니다.
* 💬 이러한 반응은 가시성의 중요성을 강조하며, 많은 사람들이 **데이터를 통해 자신의 어려움을 반영**하고 검증하는 것을 보며 위안을 얻었습니다.
* 🌱 최근 연사는 보다 긍정적인 시각을 갖도록 뇌를 재훈련하는 신경과학 기반 접근법을 수용하여 **발전과 감사에 초점을 맞춘 새로운 데이터 수집 방법**으로 초점을 전환했습니다.
* 🌈 이러한 변화는 우리가 집중하기로 선택한 데이터가 우리의 인식과 미래를 형성하고 치유의 가능성에 대한 믿음을 강화한다는 점을 강조하면서 **회복에 대한 희망**을 다시 불러일으켰습니다.

I know this sounds weird, but the thing that I'm the most passionate about in the entire world is data. Really fun, right? Well, I believe so. In my practice as a designer, I use data to tell stories. Stories that are anchored in numbers, but actually that are mostly defined by small and qualitative data, which are the ones that can add all of the context and human nuances. But what does that mean? Well, for example, when Google wanted to help people understand the threat of plastic pollution, we designed a microsite where you can drop objects that you use every day, such as a disposable plastic bottle, and see how they break apart into microplastics that pollute the sky and the ocean, making this invisible layer tangible and visceral. Or when the clothing company And Other Stories wanted to communicate about inspiring women, I designed a fashion collection where I showed the achievement of three amazing women scientists into data patterns.

that are woven and embroidered into the textiles. From a personal level, data is the lens that I use to make sense of the world. I live and breathe data. And I love data so much that one time I used it as a writing language to get to know a new friend across the Atlantic. For one entire year, we've been writing to each other every week, but we didn't use a word of English. We spoke data, sharing the most intimate details of our days and our personalities, such as all of the time that we complained and what it was about, and was it even necessary? Or the thank yous that we said and what they were for. And even the time that we argued with our partners. And right now, this full set of 52 and 52 postcards happily lives in the permanent collection of the Museum of Modern Art, which is quite nice. Thank you.

(Applause) But this mission took on a new meaning when I became sick with a chronic illness. I have been living with long COVID for the past four years. Long COVID, if you're not familiar, is an umbrella term that is used to describe the various health consequences that some of us have after an acute COVID infection or a COVID reinfection. And an infection-associated illness, like long COVID, can be mild and pass just in a few months, but it can actually be extremely disabling and leave you unable to attend to the basic tasks of your life for years or possibly indefinitely. Since my first COVID infection in 2020, and especially so after my reinfection in 2022, I started to develop constant, debilitating symptoms. These are some pictures that I took at different points in my journey, both at home and in the many medical settings that I've been at. At my worst, I was completely housebound and at times fully bed-bound,

and for a while, I even had to stop working, which has been the hardest for me. As I started to develop these constant undiagnosed symptoms, I, of course, turned to data. Tracking these symptoms every day, such as extreme fatigue, dizziness, heart palpitations, tinnitus, head pressure, nerve pain, and more. Tracking them together with the treatments that I was trying, and then biometrics from my smartwatch, what I was eating, and what I was doing for the day, such as walking or commuting, and even my level of stress. And I did that to, hopefully, understand possible correlations and help me and my doctors crack this mystery, but also to keep me sane in moments of deep suffering and uncertainty. And this is just a snapshot of four years of data collection. At a certain point in my journey, I decided that I needed to share the data that I collected with people. In fact, when you read about long COVID,

you usually read a list of symptoms that might make a healthy person think, Well, I'm tired, too, after work. Or Well, I have headaches as well. Or Yeah, after my last COVID infection I coughed for a couple of weeks, but I had never seen a thorough account of what it means to live with a debilitating condition like this one on a daily basis. I had the opportunity to share my story with The New York Times in the form of a visual op-ed. When I used the language of paint and data visualization to share my journey day after day. The piece starts with warm-color brushstrokes that surround the title 1,374 Days: My Life with Long COVID. As you start reading my essay in words, you see that the brushstrokes interact with the text. Understanding without a legend that every different color brushstrokes represent different symptoms, and seeing that the symptoms aggregate by days.

As you keep reading, a stack of different bloodwork and health tests, just a sample of the many I've had, pile up on screen, and then a body figure appears and gets overwhelmed with all the different types of symptoms that I've experienced over the past four years. Here is where my spreadsheet, my data diary of sorts, shows up. And as you keep reading, you encounter additional symbols for the hundreds of doctor's appointments, the dozens of medications I've tried, my hospitalizations, and ultimately, the tens of thousands of dollars that I spent for my care. And finally, you piece it all together when you encounter a visual calendar of my year. The calendar gets filled with all these brush strokes and the additional symptoms, and then you'll see an addition of handwritten annotation that can help you understand what was happening, my vaccinations, and my reinfections. Ultimately, seeing that the calendar of our lives changed drastically and dramatically after we got COVID.

Now, this is the detailed story of my journey, but I always wanted to include other people's experiences. And so, I asked members of the long-COVID community that I connected with online to respond to one prompt. “I hope that I will be able to ‘blank’ again.” And at the end of the piece, you read hundreds of heart-wrenching hopes from people that hope to be able to walk their dogs again, to play with their children, to get back to work, and simply to live a life that is free and independent. Ultimately concluding with a collective hope that we can all start living with a blank canvas, full of possibility once again. The response to the piece has been incredible. I received thousands of messages from people sick with different chronic illnesses and caregivers that, in different ways, told me that they finally feel seen, that they now have a visible, striking, and emotional evidence to send to their loved ones.

to make them understand what they're really going through. Data. If we look at them and represent them for what they are, which are human and nuanced representations of our lives, data can move us profoundly. Data can shape human narratives that can open conversations, convey empathy, and even connect people. As for me, you might be asking, ten months after the publication of the essay, I am doing much better. I am not cured, I still have limitations, a few setbacks, and I still take a fair amount of daily medication and prescribed supplements. But I am starting to paint a different picture for myself. Now this is my own story. I am no medical expert, and I don't aim to speak for the long-COVID community at large. But here's what I have done. Earlier this year, I decided to shift focus completely. I started a new data collection, one that is only about progress, where the categories in my spreadsheets are only what I have been able to do,

such as walking to the subway or trying a few minutes of physical activity without any consequence. Of what I've been grateful for for the day, such as a dinner out with my partner and the few moments that I felt really good in my body. I have retired my smartwatch, which, truthfully, was giving me more bad than good news every day, and I have stopped logging and therefore paying constant attention and giving meaning to my symptoms. In the beginning, it felt scary. I felt almost naked, dropping this built habit of monitoring my body so closely, something that gave me a semblance of control, and also something that made me who I have been for the past four years. But I realized something. That changing how I look at things also changes how things look. Dropping the need to observe my symptoms and shifted my focus has reshaped the way that I see my journey. Now, I want to make clear that the last thing that I want

is for people to think that these illnesses are all in our heads, or that positive thinking alone can fix them. That is simply not true. This new approach is part of a program based on solid neuroscience called brain retraining. Every day, like thousands of other people, I've been putting in hours to retrain my brain to react differently to symptoms and triggers. And this approach followed the principle of neuroplasticity, which is our brain's amazing ability to rewire itself, something that can help reduce symptoms and improve the life of people with chronic illnesses. This new approach and this new data collection have been giving me hope, something that I have missed for a long, long time. Almost a year ago, at the end of my essay, I also shared my hope at the time. It reads, I hope that I will be able to take walks again, to snowboard, to sit at a restaurant and eat with my friends,

to travel to my home country, to be pain-free, and simply enjoy a day in the sun without symptoms or fear. I hope that one day I will get back to the person that I used to be. And I am happy to report that I am on track for most of that. The snowboarding part is still a bit out there, but I will be taking a plane to go to Italy, my home country, for the first time in years in two days after this talk, which I'm really excited about. Thank you. (Applause) I believe there is a bigger message here. The world is made of data. But not the data that we produce with our smartphones or credit cards. It's made of the data that we decide to give our attention to at any given time. Because what you choose to see shapes who you will become and ultimately your entire world. I believe in my recovery now. It might be far away in time,

It might have bumps in the road, but firmly believing that it can happen and choosing to look at it over and over despite the obstacles is the first step in that direction. I know that for sure now. Thank you. (Applause)

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

The TED Talks channel features the best talks and performances from the TED Conference, where the world's leading thinkers and doers give the talk of their lives in 18 minutes (or less). Look for talks on Technology, Entertainment and Design -- plus science, business, global issues, the arts and more. You're welcome to link to or embed these videos, forward them to others and share these ideas with people you know.

TED's videos may be used for non-commercial purposes under a Creative Commons License, Attribution–Non Commercial–No Derivatives (or the CC BY – NC – ND 4.0 International) and in accordance with our TED Talks Usage Policy: https://www.ted.com/about/our-organization/our-policies-terms/ted-talks-usage-policy. For more information on using TED for commercial purposes (e.g. employee learning, in a film or online course), please submit a Media Request at https://media-requests.ted.com

연사는 데이터에 대한 열정을 가지고 있으며, 데이터를 활용하여 맥락과 인간적인 뉘앙스를 더한 스토리를 전달합니다.

플라스틱 오염에 관한 Google 마이크로사이트, 여성 과학자로부터 영감을 받은 패션 컬렉션 등 영향력 있는 프로젝트를 디자인했습니다.

데이터에 대한 이들의 사랑은 데이터만을 유일한 언어로 사용하는 친구와 1년간의 서신 교환으로까지 이어졌습니다.

하지만 코로나19의 장기화로 인해 쇠약해지고 힘든 여정을 겪으면서 이들의 미션은 새로운 의미를 갖게 되었습니다.

긴 코로나19를 이겨낸 개인적인 여정

저자는 코로나19 이후 진단되지 않은 증상을 지속적으로 경험하면서 4년간 증상, 치료법, 일상 활동에 대한 데이터를 수집했습니다.

저자는 그림과 데이터 시각화를 사용하여 자신의 여정을 설명하는 시각적 사설을 통해 뉴욕 타임즈에 자신의 이야기를 공유했습니다.

이 글은 코로나19 장기화로 인한 압도적인 영향을 강조하며, 감염 후 생활의 급격한 변화를 시각적 달력으로 보여줍니다.

코로나19가 장기화된 커뮤니티에서 경험 공유의 힘

저자는 코로나19 사태가 장기화되고 있는 커뮤니티의 반응을 수집하여 일상으로의 복귀에 대한 희망을 담았습니다.

이 글은 많은 사람들의 공감을 불러일으켰고, 개인이 사랑하는 사람들과 어려움을 공유할 수 있는 정서적 근거를 제공했습니다.

10개월이 지난 지금, 저자는 상황이 호전되고 있지만 여전히 한계에 직면해 있으며, 개인의 진행 상황을 중심으로 한 새로운 데이터 수집으로 초점을 전환했습니다.

만성 질환 관리를 위한 새로운 접근 방식

저자는 스마트워치를 사용하지 않고 증상 기록을 중단한 후 지속적인 모니터링에서 해방된 느낌을 받았습니다.

이제 감사와 긍정적인 순간에 집중하는 동시에 신경가소성에 기반한 두뇌 재훈련 프로그램에도 참여하고 있습니다.

이 새로운 접근 방식은 이들에게 더 나은 미래에 대한 희망과 한때 즐겼던 활동을 되찾을 수 있는 기회를 주었습니다.

화자는 몇 년 만에 고국인 이탈리아 여행을 계획하며 예전의 자신을 되찾기 위한 여정을 떠나고 있습니다.

화자는 우리의 정체성과 세상을 형성하는 데 있어 우리가 주목하기로 선택한 데이터의 중요성을 강조합니다.

장애물에도 불구하고 자신의 회복을 믿고 집중하는 것이 치유를 향한 첫 번째 중요한 단계로 여겨집니다.