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

Summary

In a powerful talk, the speaker shares their deep passion for data, illustrating its role in storytelling and personal understanding. After suffering from long COVID, they meticulously tracked their symptoms and experiences, using data visualization to convey the complexities of chronic illness. This led to a widely impactful visual op-ed in 'The New York Times'. Emphasizing the importance of perspective, the speaker transitioned to a more positive data collection focused on progress and gratitude, highlighting the potential for hope and recovery through brain retraining. Ultimately, they underscore the profound human narratives that data can reveal.

Takeaways

• 😀 The speaker is passionate about data, using it to tell stories that combine quantitative and qualitative insights.
• 📊 Data can make invisible issues, like plastic pollution, more tangible and relatable through innovative designs and visualizations.
• 👩‍🔬 Personal experiences and human nuances in data can foster deeper understanding and connection.
• 💔 Living with long COVID can lead to debilitating symptoms that significantly impact daily life.
• 📝 The speaker uses data tracking to analyze and understand their chronic illness, noting symptoms and treatments to identify correlations.
• 🌐 Sharing experiences and data can help others feel seen and understood in their struggles with chronic illnesses.
• 🖌️ A visual op-ed in 'The New York Times' illustrated the speaker's journey with long COVID through data visualization and art.
• 🌟 The importance of hope and progress in recovery is emphasized, shifting focus from symptoms to positive experiences.
• 🧠 Neuroplasticity and brain retraining techniques are highlighted as ways to cope with chronic illness and reshape perceptions.
• ✈️ The speaker is optimistic about recovery, planning to travel again, which reflects a positive outlook on the future.

Q & A

What is the speaker's primary passion, and how do they utilize it in their work?

The speaker's primary passion is data, which they use to tell stories that are informed by quantitative metrics and qualitative nuances in their design practice.

Can you describe an example of how the speaker has used data in a project?

One example is when the speaker created a microsite for Google that allows users to see how everyday plastic objects break down into microplastics, making the invisible effects of plastic pollution more tangible.

What unique method did the speaker use to communicate with a friend across the Atlantic?

The speaker communicated with a friend by sharing data instead of words, documenting their daily lives through a series of 52 postcards that became part of the Museum of Modern Art's permanent collection.

What is long COVID, according to the speaker?

Long COVID is described as an umbrella term for various health issues that can persist after an acute COVID infection or reinfection, with symptoms that can be mild or severely disabling.

How has long COVID impacted the speaker's daily life?

The speaker experienced debilitating symptoms that led them to become housebound and unable to work for a period, significantly affecting their quality of life.

What approach did the speaker take to track their symptoms during their illness?

The speaker meticulously tracked their symptoms, treatments, daily activities, and biometrics using data to identify correlations and maintain a sense of control amidst their suffering.

What was the significance of the visual op-ed shared by the speaker in 'The New York Times'?

The visual op-ed provided a comprehensive and emotional account of living with long COVID, using data visualization to illustrate the severity and nuances of the speaker's experiences.

How did the speaker shift their focus in data collection after their initial struggles with long COVID?

The speaker began a new data collection that focused on progress, documenting positive experiences and what they were grateful for rather than continuously monitoring symptoms.

What does the speaker mean by 'brain retraining' in the context of their recovery?

Brain retraining refers to a program based on neuroscience principles aimed at helping individuals with chronic illnesses rewire their brain responses to symptoms and triggers to improve their quality of life.

What overarching message does the speaker convey regarding data and perception?

The speaker emphasizes that the world is made up of data that we choose to focus on, suggesting that our perceptions shape our experiences and ultimately influence our recovery journey.