After losing his younger sister to cancer, novelist Kristopher Jansma thought he would reach the end of a chapter. But then life got in the way.

By Kristopher Jansma
Updated February 09, 2016
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When it comes to being a writer, you can’t beat Death as a way to wrap things up. If a story is refusing to end, just have the main character jump in front of a train or fall into a swimming pool. A quick epilogue about how everyone else gets on without them and soon you’ll be typing those long-awaited words: THE END.

Death also makes for a strong opener. Meet our stoic protagonist, standing at the grave of a loved one, then walking into a new life marked by grief, searching for purpose and redemption. The rest almost writes itself.

But in 2008, when I found myself facing the death of my younger sister, Jennifer, I realized that Death just doesn’t work the way it often does in books or movies. It doesn’t happen at the beginning or the end, but right in the middle of everything.

Jenn was diagnosed with oral cancer at the age of 21. Not only was she young, but she was in excellent health, having been a professional ballet dancer for years, first in Miami and then in North Carolina. When a sore on her tongue wouldn’t go away, after much dragging of heels, she saw a dentist. He gave her a mouth guard to wear while she slept so she wouldn’t grind her teeth. Months later, when that didn’t help, someone finally did a biopsy. It came back positive, to pretty much everyone’s disbelief. Oral cancer, we were told repeatedly, was the kind of thing you usually got after chewing tobacco for decades. This was not part of Jenn’s story. The whole thing made no sense at all, but there it was, undeniably real.

My family didn’t know where to start or what to do. Should she get treatment in North Carolina, where she lived and worked? Should we go on the big vacation that we had been planning—a week on a boat in the Caribbean? I was going to propose to my girlfriend. Was this maybe not the best time? What’s the etiquette on that? Our vague plan of attack was one of defiance. If cancer was going to intrude so rudely, we’d show it what was what and go right on with our plans.

When someone has cancer on TV or in a movie or even in most books, life tends to become temporarily suspended. The patient sits dolefully in a chair somewhere getting chemo, perhaps losing her hair, and everyone else rushes to her side and sits around thinking about what it all means. How short, how precious is life! What a silver lining it is to have this new appreciation of our priorities!

This turned out to be far from the reality. Nothing was suspended. Jenn still had to deal with all the ordinary things: work, boyfriend, furniture reorganization, dishes, rent, her roommate, etc. Mundane or dramatic, life kept happening. It turns out that chemo is more outpatient than fiction might lead you to believe. You’re in the hospital receiving treatments for only a few hours a week—then you’re just a person out in the world looking for a parking spot. You just also have cancer.

When a second tumor appeared, on her neck, Jenn came to New York, where I lived, to be seen at Memorial Sloan Kettering. There, doctors recommended a new and more intense treatment: radiation, more chemo, more surgery. There was no question that she’d live with me while she went through it—rather, my question once again was: What about everything else?

My fiancée (she said yes!) and I lived in a one-bedroom apartment on Avenue C in Manhattan. She worked from eight to six as an editorial assistant at a publishing house and usually brought work home. I was an adjunct professor, teaching freshman composition at two colleges that were 45 minutes from each other. This paid rather badly, so I also fixed computers and printers for doctors’ offices part-time. I was 25 years old. We were working around the clock; we were looking for places to get married; we were happy and young and in the prime of our dues-paying years.

Now we were also shuttling Jenn to treatments, running to the pharmacy to pick up endless medications. We cut and crushed pills, mixed them into nutrient-rich milk shakes, and pumped these into her stomach through a PEG tube when her mouth got so sore that she couldn’t swallow anything. Then grading, writing, looking for a wedding venue, cooking, America’s Next Top Model, teaching, editing, and back to the hospital for something else. We hurtled through the days like three coyotes going over a canyon. So long as we didn’t stop running, we thought, we’d never fall.

Ultimately, the treatments couldn’t keep up. We couldn’t keep up. The cancer moved to her legs and her arms and her lungs. Jenn flew down to Florida to be with my parents for the end, and life went on in New York. The spring semester started. We had to renew our lease, buy groceries, send our save-the-date cards out, feed the cat. Doctors’ computers kept breaking, and I kept fixing them.

Then, one day, wrist-deep in an endocrinologist’s printer, I got a call from my mother saying it was time. We flew down that night and spent the next few days with my little sister at the hospital, where she now needed a machine to help her breathe because the tumor in her lung had grown to the size of a baseball. It had been less than a year since her diagnosis. Now there was nothing left to fight; we had to let her go.

And even then—nothing else stopped. There was a funeral to plan. Suits to get dry-cleaned. Dresses to be hemmed. Friends and family needed to be picked up from airports, and hotels had to be booked. I had a eulogy to write, but I couldn’t forget to brush my teeth. Barely a month into the New Year and we were out of vacation days, so it was right back to it.

Was I, at least, stoically beginning a new chapter? Seeking redemption or grace? No, I can’t say that it seemed that way. My former life hadn’t gone anywhere, but for the first time I felt grateful for that: for work, for friends with other problems, for taxes to file. For all the important and unimportant things. With everything still going on, it was a little harder to notice the things that weren’t.

Emily Dickinson might have gotten closest to it, when she wrote the lines, “Because I could not stop for Death— / He kindly stopped for me.” Eight years later, I look back on it all as some kind of blur, like the middle of a novel that I skimmed. People sometimes compliment me on my strength during that time, but I can’t recall feeling particularly strong at all. It’s more like I was on a kind of autopilot. A fugue state. A survival mode I’d never known myself capable of entering before. There was no long term, no thought, no reflection. I think my brain shut off its recording function to save RAM, because when I look back on those months, I find barely anything in memory. I know it really happened because it’s still happening. These days, coping with the loss of my sister is just one more thing on my to-do list.

Death changes everything, but unlike what you may have seen or read, it doesn’t offer profundities or epiphanies on its own. There’s no time for that. It’s only later, after the fact, while you’re doing something normal—cleaning the litter box or buying stamps—that its power arrives. Because it is only life still going on in the present that makes what you’ve lost become part of the past.

About the author

Kristopher Jansma is the author of Why We Came to the City, published by Viking in February, and The Unchangeable Spots of Leopards, winner of the Sherwood Anderson Foundation Fiction Award. He lives with his wife and son in Brooklyn.