A Mother’s Heart-Wrenching Map Of Her Child’s Illness
Entertainment By Elena Boaghi | February 2, 2018
It was the summer of 2017, and the musician Kaki King’s two-year-old daughter Cooper had bruises sprouting spontaneously on her skin and lesions in her mouth. Anguished, King took her to the doctor, only to learn that Cooper has an autoimmune disease where her immune system attacks the platelets in her blood.
Terrified and stressed, King began to keep track of everything about her daughter’s health–her platelet counts, her bruises, her lesions–so she could report back to the doctors. But recording the data began to serve another purpose, too. “I needed to track her disease in some way, but I also realized I was becoming a crazy person,” she says. “I needed to check myself and check in about how I was feeling. I’m learning about the disease, from her doctors, about her, and myself. Data collection was a way to put it on a page.”
King is close friends with the information designer Giorgia Lupi, who hoped that data might help give King a sense of control over her life. In a gesture of support for her friend as well as an experiment in how to visualize the human side of data, Lupi used her notes to create a striking new visualization called Bruises.
The piece takes the data King recorded during the stressful four months when Cooper was in and out of the hospital and presents it as a meandering time line of petals set against a peachy backdrop. Though it’s based on objective data like Cooper’s platelet count and the number of lesions and bruises on her skin, it’s also based on more emotional measurements, like how hopeful and fearful King was feeling each day. The petals are separated into groups of days between visits to the hospital where Cooper’s platelets were measured; splatters of red dots indicate how low her count is while King’s anecdotes about her days are scribbled in white around the petals.
The visualization pairs with a guitar composition that King wrote to go along with it. The video above lets you experience the full piece, with the music following along as an invisible hand draws each day of those terrifying four months. The white petals are marked with a mottled visual representation of Cooper’s bruises each day, while the yellow splotches represent a positive moment–a birthday party, a playdate, a good day in the park.
“A mother having to play the map of her child’s bruising is so crazy,” King says. “But now we have this work of art. It exists. People have been very moved by it. It’s become bigger than me and Giorgia. It’s taken on a life of its own. I created beauty of what I thought was complete fucking chaos.”
For Lupi, the visualization was both a means of helping her friend and a way of showing what it looks like when the human side of data actually gets represented. “I hope this type of data visualization can evoke empathy,” she says. “Of course the idea is that you can understand this journey and see what was going on and you can relate the trends in all the days and hopes and fear and numbers–but hopefully you can feel like part of Kaki and her family’s story.”
King says that the reaction since they posted the project online earlier this week has been incredible, particularly among parents who have had sick children. And for King herself, the work has given her a sense of control over a situation no parent ever wants to encounter. “It’s very very healing,” she says. “It’s resolved a huge conflict inside of me.” Six months since the diagnosis, Cooper is stable and doing well. The family is still unsure of whether the disease, which is very rare, will be with her for her entire life.
For Lupi, the project also speaks to a greater theme that she’s thinking about and studying. She calls it “data humanism,” or injecting humanity into the cold, hard facts data tends to represent. “Data is all around us, collected for us and from us all the time and it will be more and more so,” Lupi says. “If we want it to be representative of our uniqueness as individuals, our stories, our relationships, then we need the way we collect them, interpret them, not be as an answer to our questions, but as the beginning of a conversation. “