“The Bright Hour: A Memoir of Living and Dying” was published posthumously by Nina Riggs, a woman who died at 39. Her genetic legacy included writing talent:
My great-grandparents on my dad’s side are Emersons, and [Ralph Waldo Emerson] is my great-great-great grandfather.
It also included what can only be called “white privilege,” e.g., the closely-knit extended family of aunts, uncles, and cousins who’d built successful lives, the multi-million dollar family beachfront retreat on Cape Cod, etc. But the heritage is not all positive:
“My paternal grandfather had breast cancer.” That tends to make whoever is charting my medical history look up. “He had a radical mastectomy in the 1970s. And his sister had it, too—she died in her fifties. And one of his nieces. And his daughter—my aunt.” I’m sitting in the genetic counselor’s office as she madly sketches out my family tree on a sheet of paper. There are squares and circles, the cancer victims marked with X’s. Lots of X’s. On my mom’s side: cancer in both her parents, although not breast. An early melanoma in her sister. And less than six months after this conversation, my mom herself will be dead from a blood cancer called multiple myeloma.
Her son also carries some unfortunate genes:
“I really wish I didn’t have to say this, so try not to freak out.” “Okay,” I say again. “I think Freddy has developed diabetes.” John has been a type-one diabetic for nearly twenty years. They said it’s not genetic. . . . “Okay.” I absolutely cannot think of one other thing to say. “I noticed he was drinking a lot from the water fountain at the library, and it reminded me of when I was diagnosed. So I tested his blood sugar on my meter. It’s off the charts.”
If you want to know how a nation can spend nearly 20 percent of its GDP on health care…
First ultrasound ever: I’m sixteen weeks pregnant. The darkened room, John standing at my side. We’re watching the tech—then a doctor who enters from another room, then another doctor—wade again and again into the ocean of my belly, find our growing boy there—his spine curving like driftwood, his thunderous heart. It’s the strangest thing we’ve ever seen. We can’t stop watching the screen/ ocean. Him. But they’re taking too many pictures. Too many measurements. His feet. His legs. His brain. His heart. His feet again. No one is talking at all, until suddenly someone says, “Well, I guess by now you know something is not quite right.”
Talipes equinovarus, they tell us after the scan—club foot.
Later at home, John bans me from obsessing on the Internet, but agrees to read me a list of people he finds born with club feet. It turns out it’s not just obscure, misanthropic rulers. There are athletes on the list: Troy Aikman. Kristi Yamaguchi. Mia Hamm. Freddy Sanchez—who won the batting title in 2006 for John’s hometown team, the Pittsburgh Pirates, and for whom the shapes in the ultrasound-verse will soon be named. Eight years later—leg casts, orthotic brace, surgery—we watch him round the bases, slide into third.
[Regarding the author’s mother] Eight years of cancer. They told her she had five years when she was first diagnosed. New drugs keep coming though, and some of them have worked—for a time. A stem cell transplant. Chemo. She got to see my brother get married and watch my kids grow. Multiple hospitalizations, endless courses of steroids, blood and platelet transfusions, five bone marrow biopsies, daily debilitating nausea and diarrhea, three failed clinical trials. She’s been keeping track: five days of not feeling well to every two where she’s basically okay.
Those of us whose health problems are minor are a significant annoyance:
My friend Ginny who lives down in Charleston has the same kind of breast cancer as I do, and we like to text each other with ideas for a line of morbid prefab cancer patient thank-you cards to real and imaginary people that Ginny calls the “casserole bitches.” She’s a trust and estates lawyer, so she’s an expert in casserole bitches and their eyelash batting.
I text Ginny: “You are fully entitled to slap the next person who tells you that God only gives us what we can handle.”
One day Ginny texts: “Here’s a new card for our collection [thank-you cards for helpful female friends and neighbors]: Thanks so much for coming to visit and fucking my husband. I needed a divorce to keep my mind off cancer.” The visitor in question is one of her close friends from college who has come to help take care of her during chemo. A new level of casserole bitch. She catches them in the living room one night when she gets up to get a glass of water. Ginny goes into lawyer-warrior mode. She makes them sign affidavits before they even get up from the fold-out sofa. [reference: South Carolina family law]
[after the author’s mother dies from her cancer] Ginny writes: “It’s such bullshit that there are plenty of Joan Crawfords and assholes like my husband running around among us and your mom is not.”
On being a dying parent:
Downstairs, the boys gaze at a screen on the old futon in the playroom. We will figure out what to do about them soon enough. They probably already know what’s up and are waiting for us to figure out how to say it. Their very existence is the one dark piece I cannot get right within all this. I can let go of a lot of things: plans, friends, career goals, places in the world I want to see, maybe even the love of my life. But I cannot figure out how to let go of mothering them.
A retired rabbi—the friend of a friend—writes me an email out of the blue about how he lost his mother when he was nine years old. In the message, he lists all the things he remembers about his mom and all the ways she remains in his life: her favorite flower, the books she read him, her sense of humor. “She is far from a hole in my life. She is an enormous presence that can never be replaced.” His words are a gift that I pull out some nights and let swirl through the room, brush over my skin like a tincture.
In the book, but off-topic: Don’t open your home to pit bull mixes:
Charlie and Amelia have just arrived in town. They’ve decided to escape the Western Mass winter and come live down here for a little while at my dad’s house while Charlie works on finishing his dissertation. They have a new dog—Luna—a young, bouncy pit mix that likes to get in the middle of everything. She hardly ever stops moving, and she’s still recovering from a run-in over the summer in the woods with a skunk. Charlie and Amelia can barely control her. The second night after they move into town, Luna and my Dad’s geriatric fat beagle Clyde get into a nasty fight over some food, and Luna rips Clyde’s face up pretty badly: chunks of flesh torn from his snout. [Clyde has to be euthanized.]
What do we share with cancer patients?
I am reminded of an image that one of my cousins—a woman who lost her husband to a swift and brutal cancer last year—suggested to me recently over email: that living with a terminal disease is like walking on a tightrope over an insanely scary abyss. But that living without disease is also like walking on a tightrope over an insanely scary abyss, only with some fog or cloud cover obscuring the depths a bit more—sometimes the wind blowing it off a little, sometimes a nice dense cover.
A tough philosophy to embrace, but perhaps necessary:
It’s past midnight, and we’re lying in bed. “I just can’t wait for things to get back to normal,” says John from his side of the moon. “I can’t handle you saying that,” I say after a silence, even though I know he isn’t trying to fight. “Thinking that way kind of invalidates my whole life right now. I have to love these days in the same way I love any other. There might not be a ‘normal’ from here on out.”
More: Read “The Bright Hour: A Memoir of Living and Dying”.
Philip Greenspun’s Weblog