November 18, 2013

Two Jackies and Me: Facing death on one’s own terms

Steven Petrow learned lessons about courage and grace in the face of death from two inspiring women named Jacqueline.

Twenty years ago this spring I found myself dialing Choice in Dying, a national organization that helps people prepare living wills and related documents. Although only in my mid-30s, I hadn’t taken any legal steps to express my wishes should I find myself prematurely at death’s doorstep.

Since then, in addition to my living will, I’ve drawn up a last will and testament and established a trust; designated medical power of attorney; and even nailed down a burial site along with the rest of my family.

I owe all this to Jacqueline Onassis, who died in May 1994.

Told that her cancer had spread to her liver and brain, the former first lady chose to end all treatment, demonstrating courage and grace yet again. As her son John Jr. told the media, “She did it in her own way, and on her own terms, and we all feel lucky for that.”

For me, her lasting legacy was her lack of denial in the face of death and her ability and willingness to take control of how she would die.

In other words, I got the directive.

More than paperwork

However, as I came to learn, legal and financial preparations are but paperwork. In the past year I realized there are far more powerful, and deeply emotional, steps one might take to prepare for the future – or the end – and to comfort those left behind.

It was another Jacqueline who taught me this advanced placement course in life – and then death.

Jacquie Zinn and I were classmates at Duke in the ’70s and became friends in the ’00s. For the past five years we spent most Saturday mornings together at a Spin class, racing against each other as though we were sister and brother. A triathlete, Jacquie beat me 9 times out of 10 and always left the class, saying, “That was fabulous!” She wasn’t lauding her victories but the very endorphin-filled experience itself.

Then, on a winter’s day last year when we were both planning to attend a friend’s funeral, Jacquie absented herself. At Duke Hospital, she found herself face to face with a diagnosis of glioblastoma, the nastiest of brain cancers. Despite the grim prognosis, this Jacquie, then 55, left no stone unturned, first in seeking a cure, then in hoping for remission. In an 18-month span, she underwent brain surgery, two rounds of radiation, two courses of chemotherapy and a virtual “slice and dice” with the Gamma Knife.

Over the months I watched as Jacquie succeeded in achieving remission and returning to Spin. A few months later, the cancer returned, this time with a greater malignancy.

Jacquie was into her second year of her illness when she (along with her husband, Doug) came to understand that cancer would claim her life. Jacquie asked her oncologist how long she had to live. He told her: “I can’t tell you. No one can ever know.” She pressed him further: “Weeks or months?” “Weeks,” he replied.

I thought: How many of us could be so brave to even ask such a question?

A profile in courage

It’s what happened next, however, that I found truly extraordinary. In facing her impending death, Jacquie transformed what was already a profile in courage to a plane I’d not personally witnessed before.

As Doug explained to me in August, a month after his wife died: “Once she understood the road ahead of her, she took charge of her future. She canceled her credit cards, gave her clothes to her sisters, and she taught me how to pay our bills.”

Doug continued as he fielded calls from his kids: “Every night for weeks she wrote letters to our children. To our son, James, she wrote four letters, each to be opened on its appropriate occasion: The first after she passed; the second as he graduated high school; the third following college; and the fourth upon his marriage. At every crucial milestone she wanted him – and the others – to have her present.”

Once that was done, Jacquie, who had long been a project manager at GlaxoSmithKline, undertook her final effort. As Doug put it: “Her end of life experience was project managing her funeral.” In a series of meetings with her priest, Jacquie planned her own service, choosing her favorite reflections, readings and hymns.

As I thumbed through the program I came to an insert called “In Gratitude.” The broadside began by giving thanks to Jacquie’s many caregivers. It was written in the first person and I assumed that Doug, an accomplished writer himself, was its author. That is, until it suddenly became evident that the author’s “I” was, in fact, Jacquie herself.

‘A blessed and wonderful life’

After all the letters to her children had been written and sealed, Jacquie had undertaken one more. By this time she was in a wheelchair, with her ability to write impaired, but she nonetheless penned a missive in which she thanked her doctors and colleagues, her “spiritual ladies” and her priests for celebrating “my final and most important liturgical journey,” and then finally, and mostly, her family.

In her valedictory to the rest of us, she ended with these lines:

“I had a blessed and wonderful life. Of course I would still love to be with you on earth, but that was not God’s plan for me. I tried my hardest to beat this illness, but things are not always under our control. I hope I am now with my Heavenly Father and my dad, watching over all of you.”

By this time I was in tears, as was just about everyone else reading these words – so full of life and joy, and, indeed, promise and preparation. Still, Jacquie had one last admonition to those of us gathered in her honor that steamy July day: “Please go out and celebrate my life. It was fabulous!!”

As her friends gathered in the church’s refectory afterward, we promised to write our own letters now – not knowing what the future might bring. I haven’t yet. I doubt any of us have. Still, what better legacy I cannot imagine.

Two Jackies and me. I hope that I can – one day – display their courage and grace as I, too, say goodbye.

Steven Petrow of Hillsborough writes the “Civil Behavior” column for The New York Times and is a former president of the National Lesbian & Gay Journalists Association.

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