Infographic by Giorgia Lupi

 

Kaki King knew her daughter Cooper was sick once the bruises started appearing. They showed up as little clusters, darker and more swollen than the spots a three-year-old normally collects. Soon, little blood blisters began showing up on Cooper’s skin; then came the blood in her mouth.

King, best known for her experimental rock music, took her daughter to the hospital, where doctors diagnosed her with Idiopathic Thrombocytopenic Purpura (ITP), a rare autoimmune disease in which the body attacks blood platelets, causing rashes, bruises, and increased bleeding. At the time, last August, King and her wife had just given birth to another baby, and she was overwhelmed with worry and anxiety. “Having a sick child is like no other experience,” she says. “There’s no room for any other thought in your brain.”

After the diagnosis, King began carrying around a notebook so she could jot down notes about Cooper’s heath—how many bruises she had at any given time, the number of small purple spots on her skin, the medication she’d taken—but also about her own. “Doing the data collection helped give me perspective,” she says. “It made me look at my own behavior and thoughts.”

King had started thinking about the value of data a couple years earlier after collaborating with information designer Giorgia Lupi on a couple projects that combined data and music. Shortly after Cooper became ill, King asked Lupi if she’d want to work on another, this one more personal than anything they’d done before. Together, Lupi created a visualization and animation and King paired it with a musical score she created based on the data she gathered about Cooper’s illness.

Lupi, the co-founder and creative director of Accurat and author of Dear Data, is an evangelist for what she calls soft data. Information design is often based around hard numbers and supposedly irrefutable facts. Soft data, on the other hand, has fuzzier, less quantifiable edges. It’s concerned less about the number itself than it is about the human context around numbers. “I think it’s possible to communicate human nature through data,” she says.

For the new project, Lupi took the 120-days worth of information King had entered into a spreadsheet and assigned each data set a visual component. Each day is represented by a flower petal; the cluster of petals are grouped around a stem, which denotes a hospital lab visit during which Cooper’s blood platelet counts were tested. The small red dots around the stem represent each platelet, which helped King keep track of Cooper’s progress (the more platelets the better).

The petals served as a canvas for expressing the less quantifiable aspects of a day. For instance, the soft watercolor brushstrokes on a petal show how bad Cooper’s bruising is; the bigger and more vibrant the coloring, the more intense the bruising. Meanwhile, the small purple spots on Cooper’s skin are shown as tiny pink dots on the petals. A dose of steroids gets a grey brush stroke; incidents like falling down or tripping are signaled by colored pencil strokes. Yellow indicates a good day by King’s standards; black dots indicate when she’s away on tour. The floating lines spaying off the petals indicate how hopeful or fearful King is feeling on any given day (the more strokes, the more intense the feeling).

Without a key the visual language is virtually unreadable, but it became a form of shorthand for King to assess how Cooper’s health was progressing and how it impacted her own. This gave King a sense of agency that’s often missing when information is filtered through doctors and nurses. “I could look back at a week and go, ‘oh, she had a lot of bruises,” King says. “Or I’d see that things have gotten better, but I’m still falling apart.”

For Lupi, those softer, less quantifiable moments are just as important as the hard numbers. At its best, data represents reality, even in all its messiness. And the most effective infographics acknowledge that facts and feelings are not at odds; in fact, they bolster each other. “We need to start seeing data in a different way,” Lupi says. “As an abstraction of our lives.”

As for Cooper, she’s doing better, but she’s not out of the woods yet. King says after months of collecting data, she’s learned a lot about how to care for her daughter, as well as for herself. And in the process, she and Lupi created something that they hope will give meaning to people who are going through something similar. “I’m so happy we’ve turned this into something beautiful and powerful and potentially useful to other people instead of something with no silver lining,” King says.