Julie Lawson Timmer’s debut novel, Five Days Left, chronicles the lives of two people facing gut-wrenching choices. Mara Nichols, a successful lawyer, wife, and adoptive mother of five-year-old Lakshmi, is stricken with Huntington’s Disease and is actively deciding if and when to end her life before the aggressively debilitating disease robs her of dignity. Scott Coffman, a middle school teacher, and his wife, Laurie, have been foster parents to Curtis, the eight-year-old son of an incarcerated drug user, for the past year but are due to return the boy to his newly-paroled natural mother in five days. However, when the Curtis’s natural mother dies of a drug overdose, Scott and Laurie face the difficult decision of whether to adopt him.
Both storylines have the potential for heartbreak, but it is Mara’s story that most grabbed this reader’s attention. Timmer, a practicing attorney, prosecutes the story of Mara’s decline with honesty, a gritty attention to detail, and, when befitting, tenderness. Huntington’s Disease (HD), a neurodegenerative disorder that first strikes the nervous system and eventually causes patients to lose physical, cognitive, and behavioral self-control, is always fatal. Although Mara keeps abreast, via online forums, of medical advances in HD treatment, never does Timmer offer Mara the false or sentimental possibility of a “miracle cure” to lessen or roll-back the suffering.
Reading the acknowledgements at the end of the novel, I was struck by Timmer’s meticulous background research. She consulted several doctors, “who spent hours explaining the medical, emotional and social aspects of HD” to her. She ran through her plot points with the doctors, letting them tell her if they were “medically accurate.” Mara’s storyline is intimately tied to the disease’s progress on her body, and I found myself wondering how Timmer proceeded in cases when what she found out did not dovetail nicely with what she had written in her latest draft.
The Rumpus: Why Huntington’s disease? What sparked your interest in it? Given the novel’s premise (a woman with a life-threatening disease has only a certain amount of time to live), other diseases could, conceivably, have served the same purpose as HD.
Julie Lawson Timmer: I was inspired to write Five Days Left after a friend died. My friend had inoperable cancer. Around the time she was sent to hospice, another friend was diagnosed with ALS. I wanted to write about someone dealing with an incurable, fatal disease, but I didn’t want to write those friends’ stories (nor did I feel I had a right to). So, I did an Internet search that was as ridiculous as, “Terrible, fatal, incurable diseases that are not cancer or ALS,” and the first result was Huntington’s. I knew nothing about the disease until that day.
Rumpus: The novel begins with Mara contemplating suicide. The prognosis for HD sufferers is extremely bleak. She fears the symptoms are becoming too great for her to bear with dignity. As the disease progresses, she gradually loses control of some of her bodily functions. Did you worry that that your material might be too bleak?
Timmer: I absolutely worried about that. And more than a concern that the story might be too bleak for the general readership, I worried a great deal about whether the premise might be so bleak as to be unhelpful and demoralizing to those in the Huntington’s community. I spoke about this concern at some length with every Huntington’s expert I contacted about the book, and each of them assured me that suicide is a reality in that community, and skirting the issue wouldn’t make it go away. Treating it with compassion, on the other hand, might be a help to the community. In the end, I decided to be true to Mara (who had made it clear to me from the start that she was considering suicide) and to the realities of Huntington’s disease. And if that made the story too bleak for the non-HD readership, I would accept that.
Rumpus: HD is neurodegenerative and wrecks havoc with one’s emotions. At times, mostly before Mara’s condition is diagnosed, she is downright ornery. The mood stabilizers she’s prescribed help, but there are still random moments when, for lack of other words, she flips out. Was writing a character with Mara’s emotional volatility difficult?
Timmer: Yes, it was extremely difficult. I loved and respected and felt great compassion for Mara, and I wanted the reader to have the same feelings about her. It was a risk to write scenes in which she was acting emotionally volatile or unstable, particularly when the targets of her rage were friends or family who had been nothing but loving and supportive of her. If she came across as unlikable, no reader would want to follow her story for three hundred pages. But again, the realities of HD won out—HD attacks emotions, and I couldn’t write a book about someone with HD without showing that.
Rumpus: Discuss, if you can, your research process in writing about HD. How much research did you do before you began writing? Were there moments when, as a writer, you felt as if you needed to read everything about HD? And, if so, how did you fight off that impulse—because, obviously, if you allowed yourself to become a full-time HD researcher, you’d never have time to actually write your novel!
Timmer: It’s funny, because when I first set out to write Five Days Left, I had no intention of doing much research. I’m a lawyer by day, and much of my day is spent in research. One of the attractions I had to writing a novel was the absolutely freedom I’d have from research! I could simply make it all up, and write for months on end without ever cracking a book. When I conceived of the idea that Mara would have HD, I told myself I would poke around on line for a minute or two only, to get a general overview of the disease, and then I’d rely on “artistic license” to make up the details of the condition to fit my plot.
But a minute or two online is all it takes to realize how devastating HD is to its victims and those who love them. Once I realized that, I knew there was no way I could make up details about this terrible condition. I had to get it right, for the HD community and for my own conscience. So, I spent months reading everything I could find on HD—websites, texts, memoirs. (The one thing I consciously decided not to read was any novel about HD, ALS, Alzheimer’s, or anything similar. I didn’t want the so-called “anxiety of influence.”)
After a few months of research, I drafted Mara’s entire story. I then contacted an HD expert and she was generous to enough to speak to me about each of Mara’s scenes, and to let me know if each was realistic or not, in terms of the disease. Where the expert felt I had not portrayed the disease accurately, I ran ideas past her about how I could do better. With several pages of notes about what needed to be changed and how I could do it, I revised Mara’s story to make it more accurate.
After I sold the book to Amy Einhorn and began a big revision for her, I did another round of research. More texts, more online articles, more memoirs, and more experts. I consulted with my original expert again, but also found a few more, so I could get many viewpoints about each scene.
One thing the first expert told me is that when a TV show or movie or novel portrays HD inaccurately, “it’s like nails on a chalkboard for the HD community.” That stayed with me, and haunted me, really. The last thing I wanted was to upset the HD community. Also, I had learned, by then, that many people are unaware of HD, and how awful it is. I was hopeful that if I could present a realistic picture of the disease to the general public, it would raise awareness about the disease and, hopefully, inspire people to support HD research.
So, I guess the answer to your question is: I never did fight off the impulse to read everything I could find about HD. There are people in my household who would use the word “obsessed” to describe my state of mind in connection with the research for this book. As obsessions go, though, I feel this wasn’t a bad one to have.
Rumpus: In the novel’s acknowledgements, you very generously thank the doctors who helped you understand the disease. You write, for instance, that “Kelvin Chou, M.D., listened to me run through every plot point in Mara’s story and advised whether each was medically accurate and, if not, how to make it so.” Even after all the background research you had done up to that point, was there a lot that needed changing? And, if so, were you worried that some of the changes would disrupt the story or other aspects of the novel? What did your editor, Amy Einhorn, advise?
Timmer: I found Dr. Chou after I had sold the book to Amy. By that time, I’d spent so much time with my first expert that there wasn’t a lot I had to change with regard to HD. However, there was one scene that Dr. Chou had an issue with, and it happened to be one of Amy’s favorites. Dr. Chou pointed out that the “episode” I had made Mara go through in that scene wouldn’t have occurred at the stage of HD I had assigned to her. He was kind enough to brainstorm with me about how I could revise the scene to show an episode more in keeping with Mara’s particular stage of HD while still keeping the plot on track. I came up with various suggestions based on dramatic tension and plot movement, and Dr. Chou gave a yay or nay based on the science. I ultimately gutted and rewrote Amy’s favorite scene, based on my consultation with Dr. Chou.
I was prepared to take a hard line with Amy about it if she objected, but to her credit, she didn’t. She knew by then how vital it was to me to get HD right, and she would never have suggested I keep a scene in the book that painted the disease inaccurately.
Rumpus: Ian McEwan’s Saturday also contains a character (Baxter) with HD, yet McEwan’s approach is entirely different from yours. Several reviewers nicked McEwan for concentrating too much on medical details and definitions. John Banville, reviewing the novel for the New York Review of Books, bemoaned, “Yes, there are many big words in this book.” McEwan’s protagonist (Henry Perowne) is an eminent neurosurgeon and, since the novel is told from Perowne’s perspective, Baxter comes off more as a clinical specimen than an actual human being.
I’m impressed with how you balanced providing the necessary background medical details with the need to create accessible prose. You manage to convey real information—for example, your digressions on Mara’s anosognosia are really thought-provoking—yet the flow of knowledge doesn’t weigh down the story, nor does the medical terminology bog down the pacing.
Was this something you consciously worked on? Or worried about?
Timmer: Yes to both—I worked on this and worried about it. I realized, of course, that by presenting the HD info so it was nothing more than an “info dump,” I risked losing the reader. I also risked having any reader who stuck with the book simply forget everything after it ended—a long, detailed, dry recitation of facts does not assist in long-term memory. I wanted to keep the reader engaged, and I also wanted to present the information in a way that made it easy for readers to remember a lot of the facts about HD long after they had finished the book. This is one of the many benefits, I think, that legal training brings to fiction writing: for two decades, I have been working on the art of presenting complicated legal concepts in a way that people can understand and remember. I drew on my legal training on many occasions when I was writing Five Days Left, and this was certainly one of them.
Rumpus: What has been the reaction of the HD community to your novel?
Timmer: I have so far heard from people who work in the HD community and from people whose family members had HD, and the responses have been very positive. For me, that has meant everything.
Rumpus: In the weeks after Five Days Left’s release, a real-life right-to-die case involving a terminally ill patient has hit the news. I’m speaking, of course, about Brittany Maynard, the 29-year-old brain cancer sufferer who plans to end her life on November 1, 2014. What do you make of all the controversy surrounding her decision? In Five Days Left, Mara contemplates the same situation. In light of what Brittany Maynard is going through, is there anything you might have wished to add or change in Mara’s dilemma?
Timmer: I am heartbroken about the situation Brittany Maynard is in. I have posted on Twitter and Facebook that it’s my belief Brittany has the right to play the hand she’s been dealt, and that I wish everyone in her situation—facing what Bishop Gene Robinson calls a “medical death sentence”—had the option of doing that, rather than being forced by legislation to have their cards played for them.
While I was drafting Five Days Left, I read about similar cases—HD patients in Canada who had decided to take their own lives rather than waiting for HD to dictate their final ending. Like Brittany, the Canadians were able to discuss their decisions with their families because suicide isn’t criminalized in Canada (though physician assisted suicide is not expressly condoned there like it is in Oregon, so the Canadians and their families had to be careful in their execution of their decision).
Certainly, I was aware while drafting Mara’s story that because of the laws in Texas, she didn’t have the option of discussing her plans with family or friends or the people at the HD clinic where she was treated. I could have made this point in the book, by having Mara compare herself to someone dying in Oregon or Washington state or Canada. But I didn’t want the book to be political or preachy—that’s not my style. And it’s also not needed. Those of us who have read Mara’s story can easily make the connection between the two stories, and the fact that in the United States, geography dictates which people facing incurable, fatal diseases have control over their final ending and which people do not.