Immune & Autoimmune Diseases

Visualizing The Data Behind A Child’s Bruises

When guitar god Kaki King's young daughter Cooper was diagnosed with a rare blood disorder, she turned to award-winning data visualizer Giorgia Lupi to make sense of the hurt.

Send Me More Stories About Immune & Autoimmune Diseases

Thank you! We will notify you when there are new stories about this topic.

Giorgia Lupi is a renowned designer and artist who aims to better understand human nature by visualizing data in expressive ways. Through work with clients such as Google, Microsoft, the United Nations, and the World Health Organization with her team at Accurat, much of the philosophy behind Giorgia’s work asks us to rethink what “data” is and challenging us to incorporate empathy into our definition. She calls it “data humanism,” and her latest project is as human as it gets: a look at the fragility of the human body and the emotional rollercoaster that comes with the uncertainty that can cause.

Data visualizer Giorgia Lupi.

Lupi met Kaki King about a year ago during a brand identity collaboration for Hennessy’s 200th year anniversary. A musician and composer, King has seven studio albums to her credit, and was the only woman on a 2006 Rolling Stone list naming the “new Guitar Gods.” Lupi and King found out they were neighbors, and continued to forge a friendship while looking for new ways to continue to collaborate. Then, in August last year, Kaki woke up one morning to find her three-year-old daughter, Cooper, bleeding from the mouth with a dime-size lesion on her tongue. Their pediatrician sent them to the ER.

After a blood test, she was diagnosed with a condition called Idiopathic Thrombocytopenic Purpura, or ITP, an autoimmune disease wherein the body attacks platelets which are a crucial part of blood clotting. It meant Cooper would get spontaneous bruises and burst blood vessels called petechiae all over her body. Kaki described the following weeks as “a terrifying spree of platelet transfusions, courses of steroids, blood tests, and abject terror as we watched her platelet levels rise and fall.”

When Kaki told Giorgia what was happening, she wanted to help. So she turned to what she does best: visualizing data. Cooper’s doctors had instructed Kaki to watch her skin, so they collected notes on the number and intensity of the markings. Kaki also wrote down what activities the two did that day, what treatments Cooper had recently undergone, and her blood test numbers. Finally, Kaki recorded how she was feeling: her stress, her hopes, and her fears.

The final product is called Bruises: The Data We Don’t See. Complete with an accompanying score by Kaki that chronicles the first four months after Cooper’s diagnosis, Bruises is both an emotional record of a family’s journey with illness, and an experiment in empathetic data visualization. Folks caught up with Lupi to talk to her about her own emotional journey through creating it and how it embodies her data philosophies.

How did you and Kaki decide to do this collaboration together?

This summer when she told me something was wrong with Cooper, she sent some medical records and lab results and I was trying to visualize them to see if there were patterns that I could identify about Cooper’s health. But the more we talked, the more we realized that since the condition wasn’t going away anytime soon, maybe it was smarter to do something to help Kaki understand what was going on with her too. After a few months of collection, we decided to try to get a broader message out about her personal journey. Kaki thought “we need to make something beautiful out of this shitty period.”

Were you nervous at any point while working with this sensitive story in such an intimate way?

“We need to make something beautiful out of this period.”

I was nervous when we decided to make the project public because for Kaki, it was very personal and the idea of sharing her story made her nervous. It was a lot of responsibility to share her story. But we’ve already received hundreds of messages from parents and caregivers and just human beings that were really moved. So the doubts and nervousness dissipated. We realized we’re on to something. It’s no scientific breakthrough but it can help us define what data is in the first place.

Musician Kaki King. Her son Cooper’s diagnosis of ITP was what directly inspired Bruises.

How should we be thinking about what data is in the first place?

I’m an evangelist for softer, humanist data. What I always say is that for data to be reflective and representative of our human nature and our stories,  we need to instill empathy and imperfection into how we interpret, collect, and visualize the data.  If I’d represented this in the digital standard, it would not have evoked the same kind of empathy. Data viz is usually so cold. But it is capable of stimulating us on both the cognitive and empathic level. The idea of this piece was to make it as an art piece to help people relate to the idea of the disease as something less clinical, more real, and less scary.

Beyond expanding the definition of data, what were the goals of this project for you and Kaki in relation to Cooper’s illness?

Data viz is usually so cold. But it is capable of stimulating us on both the cognitive and empathic level.

We did this to try to find ways to use artistic experimentation to help the healing journey and to frame the way we see illnesses. There are many ways to look at a pathology. Charts are important. Medical histories are important. But the information about the personal journey can be valuable to a doctor as well, to be able to suggest a therapy that’s not just based on hard numbers but also what is going on in the life of the family.

Not everyone with illness should collect data, but it can be a process of gaining control over what’s happening. It can be hard to tell the story of the previous months with accuracy. That can be easier if you regularly stop to acknowledge what is happening and observe the details. Kaki says the data collection made her feel more in control to see trends in terms of her mood. She was also able to appreciate the happy moments in these four months because of how much she was keeping track of the difficult times but also because she can remember the joyful moments more also. In the end, Kaki said the experience was healing.

A photo of Cooper with her baby brother.

What was your emotional journey like through making this? Did you find that you understood the experience more empathetically after working with the data?

I had a shared spreadsheet with Kaki, and would read as she filled it in with her data, writing about how she felt. It was very heavy. At times, I really felt overwhelmed to the point that I sometimes thought, “I can’t handle this.” I also worried about Kaki. I didn’t know at the time for sure if the data collection process for her would be healing or torture.

As I started to draw, tears came out of my eyes while I traced the lines. It’s a very physical piece.

As I started to draw, tears came out of my eyes while I traced the lines. It’s a very physical piece. You can see the bruises and the pink dots as they are on her body. It’s already a visual disease. But abstracting Cooper’s health into the data made things easier for me. There’s a bit of emotional abstraction that working with data can help you achieve. It’s useful to help people relate because it’s a period of time, of anxiety and ups and downs, and not just this one specific story.

The most stressful times for Kaki were the times before Cooper’s blood tests. They were looking for her numbers of platelets. And those numbers contained the hard truth about Cooper’s health. Sometimes she was looking good, with less bruises, but the numbers didn’t necessarily correspond. The result numbers really determined her emotions and anxiety. That’s why the timeline is not linear but grouped by the days between the tests.

What did you learn from observing the family’s experience with illness?

It was a particularly hard year for me because my dad passed away suddenly in January. I’m an only child, and my mom is alone now. So it’s been a rough stretch and I felt an empathic connection with Kaki. That said, I also don’t have kids. What I learned about was what it really means to be a caregiver. Kaki often needed to maintain a happy face and be a sane parent even when her fear level was really high.  They also just had another newborn in August, weeks before the diagnosis. She needed to be a functional parent and partner. I learned from her as a person, seeing her be able to re-establish normality within uncertainty and get her stress levels under control in just four months. She was able to say, ok, this isn’t normal, but it’s going to be our normal for a while.


Send Me More Stories About Immune & Autoimmune Diseases

Thank you! We will notify you when there are new stories about this topic.

You might also like...
When Kids Help Kids
Susan Johnston Taylor