The Bright Hour: A Memoir of Living and Dying

For me, faith involves staring into the abyss, seeing that it is dark and full of the unknown—and being okay with that. And if I can achieve that—BREATHE. STOP BREATHING. BREATHE—even for a quick moment, that is truly something.

Given the name tag, now the kids call my cane Faith. It suits her: her floral print, her sturdy rubber nub. “Don’t forget Faith!” Freddy says with a grin. “Did you lose Faith again?” I’m beginning to think Carla was playing a bit of a prank. Some days I don’t need Faith, my crutch, at all—and others I depend on her heavily. I live on fentanyl, oxycodone, ibuprofen—but Faith is what keeps me moving forward.

*

It’s hard to say exactly how the pain shapes my days; it is as variable as the weather, as tomatoes, as a child. Sometimes it finds me with the first turn in bed; sometimes only after too long at a party; sometimes it is all that I am—my truest self—and other times I only recognize it on the faces and stoops of others enough to say its name. Pain—you are a cipher as well.

I go to lunch with friends, propping Faith on the back of the chair where she dangles and rests. My friends ask a new kind of question: How is today? I hope the pain is manageable today.

Montaigne talks about how the Egyptians at their feasts liked to present their guests with an image of death—a skeleton, a skull maybe—and a subtle entertainer who yelled out: “Drink and be merry, for such shalt thou be when thou art dead!”

Faith is my skeleton at the feast, I think sometimes. I see the young mother’s double take, the kids who stare, the waiter’s nervous glance, my friends who jump to adjust my chair. Maybe the skeleton at the feast is me.





23. The Reaper


For Halloween, Freddy is a perfect Slash from Guns N’ Roses—top hat, leather jacket, black wig of curls, electric guitar, rock-star attitude. Benny is a last-minute Grim Reaper.

“What happened to being a nuzzly little fox?” I say to him when he appears downstairs in a hooded black cloak from Freddy’s Harry Potter getup last year and a convincing scythe made of duct-taped sticks. “I loved your little orange tail and your little orange ears!”

“Sorry,” he says very seriously. “I just wasn’t in the mood for my fox anymore. I promise I’ll be a fox next year. This year it turned out I just really wanted to be a reaper.”

“That’s fine,” I say. “I know how it goes. One minute you are a happy little woodland critter, and the next you’re death incarnate.”

“Yup, Mom,” says Benny, swinging his scythe over his shoulder as he admires himself in the dining room mirror. “That’s precisely how it goes.”





24. Heavy Debris


I get into a clinical trial just after Thanksgiving. Dr. Cavanaugh finds that my original tumor tests positive—at least marginally—for the hormone androgen, meaning that if we use a medication that blocks androgen in the body, there is a chance it might slow down the growth of my tumors. She is running a trial that is studying this theory.

Qualifying for a clinical trial produces some ecstatic feelings not unlike what I imagine qualifying for an Olympic trial feels like: You did it! Congratulations! All your fortitude has paid off! Gold medal in lab draws. Gold medal in initials at the bottom of the page. Gold medal in patience. It’s a very odd balance: You’re sick enough to get in, not sick enough to be disqualified, and you possess some special trait worth studying.

“Let’s call in the trial protocol team and get you consented right away,” Dr. Cavanaugh says, clearly energized by being back on a worn path, reentering a known world. Now we’re cooking with gas. Now we got us a plan, Stan. It takes a while for it to settle in that the worn path in this instance is the path of scientific experimentation—hypotheses, data collection, waiting for the unknown.

The protocol team who runs the study takes me through dozens of pages: likely side effects, possible side effects, rare and serious side effects. There are privacy concerns, research methods. There is: You must understand that we don’t totally understand.

Possible: fatigue, pain, tremors, confusion, nausea, sweating, birth defects.

There are land mines everywhere:

“We need you to have a second form of birth control in use,” says the protocol nurse. I snort, thinking of our chaste evenings lately: me drooling on John’s shoulder while we watch a show on Netflix about British detectives or superheroes or elite special forces units and he tries not to jostle me and prompt the need for another pain pill. I think we’re all set.

“IUD? Vasectomy?” she asks.

Everyone looks over at John in the corner.

“It’s fine with me!” he exclaims, putting up his hands in the air. “I’ve been ready for years!”

“No,” I say firmly. “I’ll get an IUD as soon as possible. I’m sure I can get in with my gynecologist this week.”

The protocol nurse marks it down. “Okay—whatever you all decide, just let us know.”

“It will be an IUD,” I repeat.

“What’s your deal?” John says to me when the team empties the exam room. “Why are you so emphatic about the IUD?”

“You’re not getting a vasectomy. It doesn’t feel right,” I say, stuffing the ream of paperwork into my bag, not looking at him. “You have no idea what you might want—after.”

“Jesus, Nina,” says John. He hands me my cane. “I do know that the last thing I’ll want is more kids. I hardly even wanted kids with you!”

“You never know what your new wife might want.”

“Screw that casserole bitch,” says John.

IUD. IED. I don’t know a thing about land mines, except that once you step on one you can’t unstep without it blowing up. Or without some special forces soldier coming in and miraculously shifting the weight seamlessly from your foot to something else—like to another person or some heavy nearby debris.

We stand like two people in the middle of that act in the exam room for some time: John’s arms around me, my head in his chest, neither one of us ready to shift the weight, let go.





25. XXX


I call Ginny to tell her I made it into the trial.

“Yay!” she wheezes. “We are now both official guinea pigs of the medical system.”

The tumors in Ginny’s lungs have grown enough to cause her chest to fill with fluid—pleural effusion—which makes it hard for her to talk or breathe deeply. Or maybe it’s the immunotherapy flare. Either way, they put in a drain to make her breathing easier.

“I basically have a tap in my back now,” she says. “I’m never having sex again.”

“Oh come on,” I say. “I bet there is a whole subculture for people who are into that. Medical equipment fetishes. You just need to search the Internet and find them.”

“Do you really think I haven’t done that already?” she says—laughing, coughing.





26. The Fireplace

Nina Riggs's books