To live in this world...you must love what is mortal, and when it's time to let it go, to let it go. -Mary Oliver
I am now living a double life. No, I don’t have two lovers in different cities who don’t know the other exists. That’s not what I mean. Anyone who is living with an advanced (likely terminal) illness knows about the double life. You must prepare to die, but you must still plan to live. You write your advanced directive in the afternoon and lament about politics over dinner with friends that evening. A double life.
Should I get a dog? It’s a complicated calculus. Part of the double life is that previously inconsequential, quick decisions now become major, often overthought deliberations, making even the previously most definitive mind turn ambivalent. Should I get a dog? If so, should I offer her a “forever home” or just foster? If I adopt, what age should she be? Older so that she will likely not outlive me, and so I’m not leaving her to adapt to yet another home? Younger so that she will be more adoptable in the likely event she outlives me? I call it a double life. Nina Riggs calls it a “complicated calculus.”
When a couch is more than a couch. In a memorable New York Times article, Riggs describes the complicated calculus of what would have previously been an inane decision—whether or not to buy a couch:
…in the weeks after I learned that the breast cancer I have been in treatment for over the past year had spread to my bones — breaking my spine and becoming incurable and most likely fatal — finding the perfect living-room couch has begun to feel like the most important thing I’ve ever done…
Except, just when I find one I love, it turns out I can’t click “buy now.” And commitment issues have not generally been my problem. Houses, cars, job-switching, kid-having, plane-ticket-buying, restaurant-choosing, shoe-shopping, mastectomy: Bring it. Usually I just pick a good-seeming option and don’t look back…
It’s a complicated calculus. On the one hand, a basic cost-benefit analysis: How much money do I want to spend on something I may not be around to really enjoy? On the other: Isn’t buying an expensive couch a kind of lovely expression of hopefulness? And after I’m gone, don’t I still want guests in my home to feel comfortable and stylish?
My mother’s complicated calculus: should she get cataract surgery with a terminal diagnosis? The cataract in Mom’s right eye had caused her to go blind in that eye. With blindness in one eye, she, an artist and lover of beauty, had lost her depth perception, and with that lost all the three-dimensional nuance and texture she loved, leaving her in a flattened world.
She asked two doctors, and both of them captured a piece of her inner calculus. What each said, as opposite as could be, sounded pretty much like the complicated conversation already going on in her own head.
Her first-opinion doctor said, “Why would you want to do that, you’re just going to die anyway.” Yes, he really said it. No lie. While this might seem shockingly unfeeling and cold, Mom had already been thinking the same thing, so she didn’t even flinch. Because he had reduced her from a person to a disease, he unfortunately failed to realize the cataract issue was symbolic of a larger question: What did it mean to her to live as fully as she could until she died?
About three months later, Mom had a second opinion at Johns Hopkins. First the oncology resident came in. Dr. Yao possessed amazing people skills. He wanted to know all about her interests, her life, her family, and what was important to her. She was a person, not a disease.
Then Dr. Martin Abeloff came in. Tall, soft-spoken, and attentive, Abeloff was the director of the oncology center at the time. You’d never know he carried the weight of the whole cancer center because when he was with you, you were the only thing that mattered. He, too, wanted to know about her.
He learned that she was an artist. She had had a natural artistic gift since childhood, received her first set of oil paints in high school, and won awards without ever taking an art lesson. She could paint in watercolors and oils, sketch, and, equally important to her, she could appreciate and savor beautiful things.
As Dr. Abeloff asked questions, I flashed back to the collection of magazine pictures Mom kept in a shoe box by her bed—old farm houses and barns, slightly dilapidated; old men, particularly sailors, with lined faces or crooked bodies; and colorful flower arrangements always with some fallen petals. Without fail, her collection captured the beauty of life beyond its day of perfection.
Abeloff not only understood the deeper gravity of the cataract decision, but he had asked far more questions about her than those concerning her disease, and so without ever overtly asking the most important question—“What would a good day be like for you?”—it was clear he knew.
Then he was silent, tapping his fingertips together as he thought. I imagined I could read his mind: Yes, her cancer had spread to her liver, lungs, bones, and esophagus, but wasn’t she still functional enough that she made the trip from Ohio?
Later, when I asked Mom what she had imagined he was thinking as she watched him tap his fingertips, she said, “Nothing. I was noticing how beautiful his hands were and wished I could paint them.”
Then, as the second opinion, Dr. Abeloff said, “I want you to get it done as soon as you can and enjoy your eyesight again.” “Mrs. Ezzo,” he continued, “You are an artist. You love beautiful things.” He reiterated, “I want you to get your cataract done as soon as you can. I want you to be able to enjoy your eyesight again.” What he didn’t say was what else he knew: Get it done now. This might be the best you ever feel and if you wait too long, you might be too sick to get it done later.
Shortly thereafter, Mom had the surgery and enjoyed her restored depth perception and 20/20 vision for the remaining year of her life.
“I want to live until I die,” Mom said one day as we were talking about her sorrow over her loss of function. It came as no surprise, then, to my siblings and me when she decided to forgo morphine, tolerate a little more pain on some days so she could be awake, witness nature in bloom outside her window, and laugh irreverently with us about things that are only funny if you’re in the family.
A mother doesn’t tell a daughter that without an implicit request: “Walk the journey with me. Find that sweet spot within you, that Goldilocks spot, that place that neither emotionally withdraws prematurely out of grief and helplessness, nor holds on overly long.”
Was her admission that she was going to die a sign of giving up? I think not. Was it insane that she and I planned her funeral, her final message of love, while sitting together in the infusion center getting the chemo we hoped would extend her life? No. It was not insanity, it was a particular type of paradox.
In her memoir The Unwinding, Julie Yip-Williams, a young mother diagnosed with terminal colon cancer, explains the paradox:
Until you accept that you’re going to die, you can’t really live. People think you’re giving up, that you’re throwing in the towel, that you have stopped fighting. That is what they don’t understand. It’s a paradox. Until you accept that you’re going to die, you don’t really live. In our upside-down world, two things like living and dying can seem quite opposite each other, and then at a deeper level you realize there is the paradox.
So the complicated calculus, the double life—the dog, the couch, and the cataract—are far from inane. They are how one of the deepest paradoxes of life reveals itself.
Later, after my mother passed, when I was going through the things on her nightstand and boxing them up so that we could go through them together as a family, I found a page torn from a book, interspersed among all her lovely magazine clippings and greeting cards. It was Mary Oliver’s poem In Blackwater Woods. I swear I could hear Nina Riggs and Mom echoing the final stanza:
To live in this world
you must be able
to do three things:
to love what is mortal;
to hold it
against your bones knowing
your own life depends on it;
and, when the time comes to let it
go,
to let it go.