Recently, I came across a “video game” called, “That Dragon, Cancer.” The game has neither dragons, nor the legions of knights who will slay them. Instead, it’s about life with a child with cancer and the experience of helplessness that’s all too central to that life. Created by Ryan and Amy Green, a young couple who lost their son, Joel, at age 5 after a battle with cancer, the game—one of a new breed of “point-and-click adventure” games—makes that experience very real and, perhaps, lets you reflect on the patient or caregiver experiences that you’ve had in your own life.
As a researcher, I have found the patient experience interesting throughout my work—whether it was orphan conditions or cancer, or something more “common” like diabetes—but “interest” is more clinical a term than what it is. My clients and I look for common themes: How can I codify the experience so that it makes sense to us?
If you were to play “That Dragon, Cancer,” you realize the momentary successes and the eventual slide into the abyss (for many tumors right now) all at the same time. It’s hard to celebrate a glimmer, fleeting as it is, that will surely be followed by more gray.
This game puts you right there in the family’s life, during tough days spent in the hospital, with their little boy receiving his treatments. There’s a scene in the game with Ryan holding his son and neon green fluids going directly to Joel’s brain, almost looking like everything is at peace, but it made me uncomfortable, and it’ll likely make you feel uncomfortable, too.
If I were in the family’s shoes, this game feels like something that I would do. I’d want to share my story the only way that I could, and find a way of channeling that experience into something. Perhaps therein lies the power of this idea: Empathy is never stronger than when faced with reality, someone else’s or your own.As a disease progresses, the complexity of emotion needs be understood. There are a lot of emotions felt—often including suffering, angst, reflection and helplessness—most of which a pharmaceutical company can’t do anything about. However, at least knowing what it really feels like will make us go beyond saying, “We bring life-saving drugs to the market,” to saying, “We can feel a tiny sliver of what you feel, and we will stand with you.” As “That Dragon, Cancer” demonstrates, understanding the patient journey isn’t the same as knowing and empathizing with the waypoints.