Rare disease plays a role in the recent novel, A Little Life
by Hanya Yanagihara,* but not as a central theme or major plot line. The primary plot lines concern the consequences of violent, sexual assault, many of which themselves are violent and tragic. The sections touching on rare disease serve only to explain the actions of an important figure in the book. Although these sections are few and brief, they are poignant and take readers deeper into the experience than the more common telling of one damn thing after another. In particular, these sections cover rare disease diagnostic odysseys and bonds that can persist between parents after pressures of rare disease experiences sundered their marriages.
I am referring to this novel as literary
fiction to distinguish it from other types of books that feature rare disease, such as memoirs, biographies, autobiographies, pathographies, and histories. These other forms provide important insights about rare disease experiences to be sure, but literary fiction transcends mere descriptions of events arranged in chronological sequences. Literary renderings take readers past recognizing particular situations to discerning patterns they form, past recording individual details to imagining broader dimensions they convey, past witnessing events to feeling the consequences they generate.
One of the situations covered in A Little Life
will be recognizable to many people dealing with a rare disease, the “diagnostic odyssey.” In this section, Harold describes the odyssey he and his wife Liesl, a physician, were forced to endure to find out what was wrong with their four-year-old son (Jacob) who was deteriorating before their eyes.
And then began the months of going from one doctor to the next, of having Jacob’s blood drawn and brain scanned and reflexes tested and eyes peered into and hearing examined. The whole process was so invasive, so frustrating—I had never known there were so many ways to say ‘I don’t know’ until I met these doctors—and at times I would think of how difficult, how impossible it must be for parents who didn’t have the connections we did, who didn’t have Liesl’s scientific literacy and knowledge. But that literacy didn’t make it easier to see Jacob cry when he was pricked with needles, so many times that one vein, the one in his left arm, began to collapse, and all those connections didn’t prevent him from getting sicker and sicker, from seizing more and more, and he would shake and froth, and emit a growl, something primal and frightening and far too low-pitched for a four-year-old, as his head knocked from side to side and his hands gnarled themselves.”
This description lends credence to attaching “odyssey” to the journeys families take searching for a rare disease diagnosis by calling to mind the travails Ulysses experienced making his way home from the Trojan War in Homer’s The Odyssey
. The 10 years it took Ulysses to get home is not far off from the oft-cited time to get a rare disease diagnosis.
The novel also touches on the pressures rare diseases can exert on marriages. Harold and Liesl’s marriage could not withstand Jacob’s illness and death. But, while the experience severed their marriage, it could not sever every connection between them, even after they both remarry and live on opposite coasts of the country. Harold describes how this connection continues to manifest itself.
We had made someone together and we had watched him die together. Sometimes I felt that there was something physical connecting us, a long rope that stretched between Boston and Portland: when she tugged on her end, I felt it on mine. Wherever she went, wherever I went, there it would be, that shining twined string that stretched and pulled but never broke, out every movement reminding us of what we would never have again.
Many people in the rare disease community will find the fate of this marriage believable on its merits. When rendered as it is in the novel, they may also find catharsis from it, which literary efforts aim to achieve.
I hasten to reiterate that rare disease is not central to this novel, and that the main thrust of it concerns the consequences of violent, sexual assault and other tragedies. While the novel is compelling in many ways—a 2015 Man Booker Award finalist—not everyone can tolerate the violence and suffering that appear on many of its pages. For more background on the novel, an annotation of it is available in the New York University Literature, Arts and Medicine Database
*Yanagihara H. A Little Life. New York: Anchor Books; 2015.