Remembering Elizabeth Edwards

The following is reprinted from Nicole Onesta’s blog on her father’s battle with kidney cancer Bumps in the RoadFollowing that piece is a penetrating article reprinted from Slate on-line magazine by Meghan O’Rourke.

Today it was announced that Elizabeth Edwards is loosing her battle with Cancer. She will be stopping her treatment. Knowing she is a mother of two small children, my heart literally aches for her. She released a statement on Facebook, and I thought her words were so brave and such a good reminder to all of us that are still healthy.

“You all know that I have been sustained throughout my life by three saving graces – my family, my friends, and a faith in the power of resilience and hope. These graces have carried me through difficult times and they have brought more joy to the good times than I ever could have imagined. The days of our lives, for all of us, are numbered. We know that. And, yes, there are certainly times when we aren’t able to muster as much strength and patience as we would like. It’s called being human.

“But I have found that in the simple act of living with hope, and in the daily effort to have a positive impact in the world, the days I do have are made all the more meaningful and precious. And for that I am grateful. It isn’t possible to put into words the love and gratitude I feel to everyone who has and continues to support and inspire me every day. To you I simply say: you know.”

Elizabeth’s Legacy: It wasn’t her political career but the window she gave us into the reality—and illusions—of dying.

In 2006, after my mother was diagnosed with stage IV colorectal cancer at the age of 52, I felt a weird connection to Elizabeth Edwards. In some ways she reminded of my mom. They looked a little alike, they seemed to share a kind of pragmatic idealism and the gift of natural authority, and they both had advanced cancer in their 50s. So I felt warmly toward Edwards, and I rooted for her in her struggle, and I defended her when friends thought she was foolish to go on the campaign trail while ill. She should be at home with the kids, they said. Why? I wondered. The strange truth of cancer is that it both doesn’t transform you and does; it lifts you up, but it cannot make every moment holy, or perfected, or ideal. My mother chose to keep running a school, though it arguably might have been “better” for her health if she hadn’t. So who were any of us to say that Edwards shouldn’t devote her time to helping her husband become president? What did we know of the strange internal transactions that the ticking timer might produce?

Of course, I was hardly alone in my attachment to Edwards. One of the most distinctive things about her wasn’t just how much she suffered and survived—in addition to her cancer, she witnessed both the death of her son, Wade, in 1996, and of course her husband’s infidelity with Rielle Hunter—but how much of this suffering took place in public, where every move was analyzed and judged. Despite all this Edwards frequently acquitted herself with an aplomb and equanimity that led Arianna Huffington to speak of Edwards’ having “suffered multiple setbacks with so much grace” on CNN’s Parker Spitzer

Tuesday night. Inarguably, Edwards did have what my colleague Hanna Rosin called an “ability to seem, in the same moment, invincible and also vulnerable and exposed” that appealed to many people, especially women.

But defending Edwards’ choice to soldier on in politics got a lot more complicated when it became clear that she’d known of her husband’s affair and yet continued to campaign for him. Women who had lionized her were crestfallen to find that she had believed (or that she’d pretended to believe) the affair was a mere one-night stand. Who was this credulous Elizabeth? Where had the straight-talking pragmatist gone? The revelation, as Rebecca Traister put it when Edwards appeared on Oprah in 2009 and let it be known that her husband had persuaded her he should stay in the race, was “crushing to anyone with an idealized view of Elizabeth Edwards.”

Even so, it is tempting, given that she lived with cancer for six years, to speak only about her battles, her courage. But Susan Sontag argued many years ago against making illness into a metaphor. We might say the same thing about making death into a vehicle for redemption. Edwards certainly was brave. But her life in the public eye dramatically embodied the complexities of living with disease—complexities many of us may someday face. Edwards clearly wanted to continue with regular life—and yet her life wasn’t quite regular. And the tension between those two things created an opening for a kind of compromise it is all too tempting to make when you are facing death and your husband has a chance at greatness: You persuade yourself that the affair he had might not mean he must stop running for president.

What sometimes gets lost in both the “grace” rhetoric and the rhetoric of crushed idealizations is the real person, the fact that someone with cancer is neither merely “battling” it nor being “brave” but actually living with it. Such a life may ache for normalcy but also involve colossally painful choices and outcomes. People in pain and grief often allow themselves for a moment to hope against hope that their fantasy of transformation, of escape, of healing might become reality. They think that perhaps if escape from illness isn’t possible, then some good luck is; that while they might die, their husband might become president. Elisabeth Kübler-Ross first coined her five stages of grief (“denial, anger, bargaining, depression, acceptance”) to describe the emotions that the dying experience upon learning of their fate; whatever the problems with stage theory, it’s fair to surmise that Elizabeth was bargaining when she chose to plunge forward with John. (Come to think of it, these stages might as accurately apply to discovering a husband’s infidelity.)

While people may want to live “normally” with loss—Elizabeth Edwards went shopping and bought a red blazer right after she found the “pretty big” lump in her breast; my mother and I went to pick out several new outfits for her two weeks before she died—the truth is that illness is distorting. However many red blazers you buy, the presence of disease causes a profound tension that can’t be fully ignored by the ill person or her family. Psychiatrists call this “anticipatory grief,” and it can be as powerfully painful as what we think of as normal grief, the anguish that follows a person’s death. Doctors have found that divorce risk is higher in marriages where wives are ill than those where they are healthy.

Because our culture is deeply uncomfortable with the reality of death—we want to find the upside in loss, the cheerfulness in tragedy—it is precisely the crack in the “idealized” Elizabeth that is to me most interesting and noteworthy in memorializing her. As it turns out, the reality of living with cancer is at once more awful and more normal than most of us can imagine before watching it firsthand, and if Edwards’ political legacy is tarnished, a more enduring legacy may be the way she embodied the paradox of dying both in her life and her writing. Edwards wrote about the banal reality of disease in Saving Graces, her memoir about “finding solace and strength” with strangers while living with cancer. The book opens with the discovery of her tumor, the money shot of any illness memoir:

My face was tilted toward the stream of water from the showerhead. Water spilled from the corners of my eyes as my fingers outlined the unfamiliar lump in my right breast. Around and around, I traced its edges. Try as I might, it wouldn’t go away.

As Joan Didion wrote of her husband John Gregory Dunne’s fatal heart attack, “Life changes in an instant.” But the trouble with a long death is what to do in the next moment, and the moment after that. How should one—how can one—live with a death sentence? It turns out dying in the modern era looks a lot Hemingway’s description of how people go broke: slowly, and then all at once.

In that slow path, there are as many opportunities for fallibility as there are for grace. I find myself wondering if the intensity of the backlash to Edwards’ “choice” suggests that on some level we’re looking away from the whole truth. From a healthy distance, the decision seems so black and white: Covering up the affair endangered the Democratic party, if not the nation. Surely we would never have made the decision she did, we think! And so when we distance ourselves from the “wrongness” of Edwards’ choice, we distance herself from the calamity of her illness. We’re supported in this conviction by the genre of illness memoirs, which create a narrative out of moments of conversion and understanding even as they describe something fundamentally random and mysterious. “All of my old trivial selves fell away, and I was reduced to essence,” Anatole Broyard wrote of facing death.

To find the essence, to be reduced—this would, after all, be redemptive. As for Edwards, she was less lyrical, more banal, and perhaps more suggestive. As she wrote in Saving Graces, while waiting for her results she was “more buoyed than worried.” After all, “one thing I had learned over the years: hope is precious, and there’s no reason to give it up until you absolutely have to.” But she continues:

This is where the story changes, of course. The ultrasound, which followed the mammogram that day, looked terrible. The bump may have looked smooth to the touch, but on the other side—on the inside—it had grown tentacles, now glowing a slippery green on the computer screen.

And that is where the story stops being a story, and the lines stop being smooth, and life becomes a series of moments that don’t completely connect.

Written originally for Slate by Meghan O”Rourke


About Dennis Pyritz

Dennis W. Pyritz, RN, BA, BSN, has been a cancer nurse since 1987 and a cancer and bone marrow transplant survivor since 2004. In December 2001 he was diagnosed with t-cell prolymphocytic leukemia (T-PLL), a rare aggressive form of chronic lymphocytic leukemia (CLL). Dennis was treated with the then new monoclonal antibody, alemtuzumab (Campath) as this disease has a median survival of 7.5 months. He achieved a 26 month remission but relapsed in February 2004. He was retreated with Campath and went into a second remission. In August 2004 he underwent an allogeneic peripheral blood stem cell transplant with his brother, Mark, as donor. Dennis has remained in remission since - a near miracle. Throughout his career as cancer nurse and patient, Dennis has had the opportunity to speal to both lay and professional groups. Dennis has spoken on cancer topics and survival issues across the country as well as in the United Kingdom, Norway, Austria, Portugal, Honduras, Panama, Guatemala, Trinidad, United Arab Emirates, Jordan, Cyrpus, Israel, and India.

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