Inspiration

In my novel, a five-year-old boy living in Japan is suffering from cardiomyopathy. A central conflict of the book involves the decisions his parents must face about seeking a heart transplant.

It's the late 90s and Japan has just conducted it's first organ transplant from a brain dead donor since the passage of the Organ Transplant Law two years before. The law legalized transplanting organs from brain dead donors--something that had been illegal and highly contested since Japan was one of the first countries to perform an organ donation in 1968 (more on that intriguing story in another post). Despite the legality, brain death was not officially recognized as legal death in cases not involving transplant: Brain death and organ transplant remain controversial and heavily debated topics in Japan. Further, the law did not allow children under the age of fifteen to be donors and so young children (like the one in my novel) could not receive a transplanted heart unless they were able to go abroad to get one. This is the backdrop against which my protagonist, Yuki, must decide how to help her ever-sicker son.

Inspiration for this part of my novel lies wholly in Margaret Lock's brilliant analysis of brain death in Japan and North America. An acceptance of brain death as death (as opposed to, say, the cessation of heart beat) is a necessary prerequisite for some kinds of organ donation--heart, lungs, organs which require the ongoing beating of the heart to remain viable. And Lock's analysis of how and whether brain death came to be an acceptable concept is fascinating. Her book, Twice Dead traces the emergence of the concept of brain death in the two cultural contexts and explains the hows and whys of its acceptance as a mostly unproblematic event in North America compared to ongoing controversy in Japan.

As a North American reader, it was the brilliance of Lock's analysis that I found myself asking, why DID North Americans accept brain death so easily? Instead of marveling at the strangeness of Japan's resistance, she compelled me to look critically at what had previously been my taken-for-granted reality.

Which, in turn, inspired me to tell one possible version of the story as it plays out in an everyday life.