CHAPTER 12

LESSONS FOR LIFE

Legacy Questions

“SCATTER ME TO THE WIND or take me to Paris.” That was my mother’s response when I asked her what she wanted us to do with her after she was gone. For four years she’d been battling her cancer. But when the end came, it came fast. And here we were. She was with us, talking. That’s when I broached the subject.

?

Mom had not made any plans for herself. No plot or memorial, no discussion of where or how. At the point I felt she knew what was coming and was ready for the question, I asked. What do you want us to do with your ashes? She shrugged and offered her one-liner about Paris. I can hear it as vividly today as the moment she uttered it. Mom had visited Paris as a young woman, loved it but had never returned; so it always represented a youthful adventure for her, free from the stresses of life before or after.

I told her I would do what I could. I had visions of going to the Eiffel Tower or stepping behind one of those kiosks on the Rive Gauche, trying to fulfill her dying wish, only to be arrested by a gendarme for littering. It took a while but I delivered. I found a beautiful forest in Provence, overlooking ancient villages and vineyards. I planted some of the ashes at the base of a cedar, took a picture, and reflected on her life. She will be in France forever.

We never had the ultimate deathbed conversation—the final good-bye, the reckoning of a life, the lessons passed along. We didn’t do the thank-you-love-you-what-has-it-all-meant-see-you-on-the-other-side discussion. That wasn’t her style. I don’t think she wanted to face it and I didn’t want to force it. In retrospect, that was my mistake. We should have had that conversation. It didn’t need to be forced.

How strange that the journalist son failed to string together a few simple questions just to get us started. I think I know what she would have said, but I’ll never know for sure. I wish I could have heard her answers in her voice. I just needed to ask.

Seeking Context

I call these legacy questions. They ask what we’ve accomplished or changed and inquire about the lives we’ve touched. They are questions about meaning, spirituality, lessons learned, gratitude, regrets, people and purpose. Most of us think about questions like these as we move through life—especially toward the end, when we take stock, look back, and think about what it all meant and what difference we made. But legacy questions also ground us along the way. They add meaning to the present and context to the future. By asking them early and often, we take stock of our lives and check our bearings and seek balance.

Throughout this book, drawing from my experience as a journalist and the kinds of questions I’ve asked people over the years, I’ve examined how to seek answers, chart a course, or pry information out of people who would rather not give it. I’ve looked at how questions set the stage for creativity and unlock the mysteries of people and the natural world. Legacy questions are different. Whether you ask them of yourself or others, these questions open the door for reflection and resolution. They seek context. They can be existential or spiritual. Whether you are ready to think about a legacy in the literal sense or are merely pondering the meaning of life, legacy questions ask about meaning and gratitude, mistakes and adversity.

You gain perspective from these questions by starting at the end.

Why Didn’t I Ask?

My mother was a survivor—as were so many Depression-era kids. Her family lost pretty much everything in the market crash of 1929. Through the early years of the Depression, just as Mom was coming into adolescence, her family was forced to move from place to place. They split up for a time when she and her mother had to move in with relatives in Philadelphia while her father stayed in New York to find work. He finally succeeded, and they reunited, but money remained tight. The jobs were not secure. Her mother went to work too, in a settlement house, but died soon after—of acute appendicitis, most likely—when Mom was just sixteen.

Still, my mother finished public high school in New York City and, egged on by her outspoken aunt, went to college. That was not something a lot of young women did in 1938. College was no escape, however. She was a student when Pearl Harbor shook the planet and pulled America into world war. Shortly after her graduation, her beloved fiancé, an army doctor, diagnosed his own brain tumor. He died before they were to be married. I’m convinced Mom never quite recovered. That Paris trip was a rare escape.

Mom got a job as a social worker, earning $35 a week. That’s when she met my dad. They married but were from different worlds. Mom’s family had been in America for generations and was educated and established. Dad’s family was first generation, poor, and barely literate. She grew up with role models. He grew up on his own. She was outspoken. He had not yet found himself.

Mom bore the second of her three children in a taxicab as they raced across Manhattan to Lenox Hill Hospital. Lora, born premature, brought something else to the family, Down syndrome. Over the years, her disability became another flashpoint between them. My parents’ marriage ended badly, bitterly.

Life was seldom serene and never settled. Mom, always a fighter, battled what she called the “system” to gain education and independent life for Lora. Though she clearly was proud of her kids, she always found something to criticize. But as difficult as she was at times, my mother also was smart and quick and could be wickedly funny. Mom judged everybody with a profane blast that made us wince. “Asshole!” she would shout if the driver ahead of her was turning too slowly. “Idiot,” she’d comment if the pharmacist failed to fill the prescription properly.

Mom and I had our own rip-roaring fights. But we could also sit and talk about the world or human nature for hours on end. She had opinions about everything. My youngest sister, Julie, and I were with her at the end. At about 2:30 in the morning, the hospice nurse came in and turned her a bit. Mom opened her eyes and said, “Peace.” It was the last word she spoke.

When I went back a couple of days later to thank the hospice staff, I asked the social worker how many people have a meaningful conversation where they come to terms with one another and what they’ve done in their lives. Do they ask about their lessons learned, resolve some regret, or celebrate their life story?

“Not many,” she told me. “Not many.”

The Rabbi

Not long after Mom died, and purely coincidentally, the Hospice Foundation of America asked me to host a video for a continuing education course for end-of-life professionals. I didn’t hesitate. The course involved interviewing clinicians, hospice workers, physicians, social workers, and spiritual care providers, asking them about research and best practices. They shared their experiences and their stories.

While interviewing these experts, I discovered a common theme. These remarkably caring people, who so clearly see life as a journey and death as an inevitable destination, were uncommonly good listeners and superb questioners. They told of conversations, sometimes with difficult patients or fractured families, that helped people come to terms and grieve, but also to appreciate life and find a narrative—a legacy. Questions served as part of the therapeutic toolkit. Asking people about their fears and concerns, about their quality of life and their accomplishments invited intensely personal and revealing reflection.

One of the most memorable people I met, Rabbi Gary Fink, dealt with the big what and the why questions every day. As the spiritual care adviser for hospice in Montgomery County, Maryland, this soft-spoken man with the gray beard works with people who occupy all parts of the religious spectrum, from those who find comfort in faith to those who reject religion altogether. Still others, he told me, create their own spirituality or approach mortality in a fatalistic way.

Gary Fink never judges. He never rebukes or asks if a patient believes in God. Instead he asks:

The answers reflect the range of human experience, he explained. Faith. Family. What I did for my school. The work I did with the blind.

He asks:

He hears common threads from distinct perspectives: Thanking people. Giving back. Making sure my family will be okay. Knowing that my kids are launched. Pondering what life was all about.

Gary’s goal is to get people talking so that they can put their life into perspective. He wants to help them find their sources of meaning. He has his own questions about what and why.

He has thought deeply about the questions people have asked him as they confronted death and tried to make sense of it.

I drove out to Gary Fink’s office. It was a low, nondescript brick building that could have been mistaken for a suburban strip mall, except that inside on the walls, there were all sorts of drawings from children to their grandparents, letters of appreciation to the staff, and testimonials to loved ones. I wanted to hear more about the questions people ask, and the questions he asks.

He told me that some of the questions are specific to the moment and have tangible answers.

Others aren’t so easy and ponder the unknowable.

Gary often replies with a question of his own. “What do you think God might have in mind?” Or, “What thoughts do you have when you ask that question?” A conversation usually follows and becomes a story. “I help people create narratives, each one original, unique, and important,” he explained. “And meaning is embedded in all of their narratives.”

Gary asks about achievements and failures, people and impact. Sometimes religion is part of the dialogue, sometimes not. He does not preach or judge. He includes the patient’s family and friends, inviting them to join the storytelling.

The rabbi believes that a properly told life story can capture life’s impact and its meaning. But not all stories have happy endings, and not all lives end with clarity or resolution. A question can prompt a reply brimming with guilt or sadness. Anger and sorrow are not uncommon emotions at the end of life, he explains. Gary hears about broken promises, unfulfilled dreams, hurt feelings—all inevitable parts of the story of life. He presses patients and families alike to confront their sadness. He asks without hesitation and encourages dialogue like this:

Memories of adversity can make a family stronger. In the right context, they can provide comfort. Then, the rabbi says, “you have turned a burden into a blessing.”

Facing Failure

Some burdens may seem insurmountable: feelings of acute failure, a sense of a wasted life. But legacy questions can brighten even those dark places. End-of-life expert and author Ken Doka offers proof. A principal contributor to the hospice training video, Doka has worked with all kinds of people, including patients who expressed wrenching regret at the end of life—about their inability to hold a job, stay in school, or provide for themselves or their families. But Doka has found that even these people often can be guided to a more positive, reassuring place. “Sometimes in framing their lives as lessons that others can learn from, there can be meaning,” Doka says. “The story may be, ‘I made a lot of mistakes. I didn’t learn from them, but others can.’”

He describes a young man we’ll call Martin, who had been a street hustler since he was a kid. When he had just graduated from high school, Martin went to jail for drug possession. After that, he never could hold a job for long. He was estranged from his entire family, except for a brother, who had asked Martin to be godfather to his nephew. Martin agreed, then failed to show up to the baptism. Furious and disappointed, Martin’s brother told him he was “worthless.”

Now, still in his twenties, Martin was dying of AIDS. He told Ken he didn’t have much to be proud of. No family, no job, no legacy beyond the streets. He was sorry he didn’t make it to that baptism. He cared about his nephew.

“What would you say to your nephew?” Ken asked him.

“That I have nothing to give him. That I love him,” Martin said.

Ken said, “Look, Martin, you’ve had some rough times. You’ve learned a lot of lessons about things you shouldn’t do.” He asked:

Martin thought for a minute. “Stay in school. Don’t do drugs.” He spoke softly and paused. Then Martin revealed his secret. He was gay. “I never felt like I belonged while growing up. In my community it was considered a sin.”

Ken listened, then asked, “What advice do you have for your nephew?”

“Be yourself.”

Ken wrote down Martin’s words, went home, and turned them into a letter addressed to Martin’s nephew. The next time they visited, he asked, “What do you want me to do with it?”

“Please give it to my brother—for my nephew.”

Martin had something to pass along after all.

Ken’s questions helped Martin see value in his life story and share it with someone he cared about. Ken believes every life has meaning, though sometimes it takes hard work and persistent questioning to find it. He asks:

End-of-life experts speak in terms of creating a “meaning narrative.” They believe this kind of story makes people feel better about life and more positive about themselves. One approach involves a “question protocol” to help patients recall significant personalities, places, activities and experiences in their lives. In one study by Harvey Chochinov and others, printed in the August 20, 2005, issue of Journal of Clinical Oncology, the researchers asked terminally ill patients to describe when they felt most alive, to recount their most important roles and accomplishments, and to share their hopes and dreams for their loved ones. The researchers edited the responses into a “generativity document” to be given to a family member or friend. When the patients read their document, two-thirds reported a “heightened sense of meaning.” Nearly half said their will to live had increased. “Getting down on paper what I thought was a dull, boring life really opened my eyes to how much I really have done,” a forty-nine-year-old woman said.

In Search of Meaning

Questions of death lead to questions of life. One of the most moving assignments I had when I worked at CNN involved Oregon’s “Death with Dignity” law. The provision permitted people diagnosed with a terminal illness and less than six months to live to obtain a prescription that would end their lives if they decided that’s how they wanted to die. My story revolved around Greg Yaden, a fifty-nine-year-old Oregon man who was dying of leukemia.

The day before I met Greg, he had received a blood transfusion to replenish his failing white blood cells. We met at his front door. He offered a firm handshake and he spoke in a clear voice. Though he looked pale, his stride was sure and strong. He’d planned an ambitious day for us and he was anxious to begin. With camera crew in tow, we fished for trout at a stream not far from his home, had a beer at his favorite bar, and then sat in his backyard for the interview.

He told me he had never finished college, had worked a variety of jobs around the country, and had been married twice. He was now living with his girlfriend, Missy. The two had met ten years before, when he was working in California. They had moved together to Oregon, where they both had the “freedom to roam.”

Greg had been traveling on business when he felt pain while walking through the airport. Arthritis, maybe, he thought. Then one day he got dizzy just walking to the store. His head felt like it would explode. He went to the doctor, who ordered tests. They came back with the deadly diagnosis. Intensive chemo wasn’t enough; he would also need a stem cell transplant. Greg’s doctor’s conducted an exhaustive search for a compatible donor, which included his brother, without success. Between the chemo and the waiting, it was a rough ride. Greg finally made a decision. “Gang, here’s what I’m thinking,” he told the doctors. “The anxiety is getting a little rough on me. Sitting by the phone waiting and waiting and waiting and getting my hopes up. I really thank you so much for searching the world, but let’s just move on and let’s look at having a good quality of life.” He wanted the freedom to roam. That’s how he lived and it’s how he wanted to die.

Greg signed up for a drug cocktail that would end his life on his own terms, if he chose. It wasn’t about pain or hastening the end, he told me. It was about having control.

Greg talked about the jobs he’d had, the places he’d been, and the people he knew. Meeting Missy was a high point. And despite the divorces, he was close to his extended family. “I’m a brand-new grandpa, so I’m passing the torch,” he said.

“Seize life,” Yaden responded instantly. “Just go get her. Have fun. Be good. Be a good human being and go have fun. Don’t hurt anybody else. Be good. If you want to do something, just go do it.” He told me he had narrowed down and written his rules to live by: “Don’t be afraid of failure. Be a kind human being.”

I will never forget this ordinary man who was so thoughtful, courageous, and composed. He had never been in politics and wasn’t an advocate, but he was devoting his waning energy, and some of his precious remaining time, to advocate for this law and share this story with me. He needed to make a point, he said. He wanted people to know about control and dignity. And about the journey. “I am a great advocate of choice,” Greg told me. “Oregon and the voters have given me the opportunity to end my life with some control and dignity. I’m in good company because death is inevitable for all of us. That’s pretty comforting.” This last mission—standing up for a belief—helped lend his life greater meaning. Greg wanted to talk. He had a lot to say. All I had to do was ask.

Greg died two months after I visited. He didn’t need the medicine.

Asking for Life

We do not need not wait for the deathbed moment to ask about the meaning of our lives. Legacy questions travel with us. If we have the courage to ask them, they help us get our bearings and write our story. If we listen closely to our answers—even if they are not clear or uncomplicated—we gain perspective. As I was working on this book, my daughter shared an email she’d received from her friend, Jen. At twenty-five, Jen had led a pretty darn interesting life. She had traveled the world, gotten a terrific education, and had more options in life than most. But she had paused to ask about the meaning and the priorities of her options, where they would take her, and what she would get out of them. Her questions would have made Gary Fink, Ken Doka, and Greg Yaden proud.

Call it the indulgence of youth, but I know a lot of forty- and fifty- and sixty-year-olds who ask—or should ask—variations on these questions. Jen just started early. Even if she never comes up with definitive answers, she will appreciate and consider her choices more thoughtfully for continuing to ask.

Legacy questions serve as signposts.

I never got a chance to ask my mother these questions. Not that her feelings were much of a secret. She was never short of opinions. But I should have asked; she would have answered. She would have said she wanted to be remembered not for being nice but for having principles. She believed the world needs more fierce advocates who fight for what’s right. Mom was proudest of Lora, who despite her Down syndrome defied the odds and just about everyone’s expectations. Mom spoke often about the moment, soon after Lora’s birth, when she threw the doctor out of the room. He had said he was sorry she had given birth to a “mongoloid” child and offered to contact an institution that would put her away.

My sister Lora has lived semi-independently for nearly forty years. She has traveled on her own, participated in the Special Olympics, and become adept at caning chairs and making pottery. Her work adorns our home. She talks to her dad every week. She still misses her mother.

Lora will read this story, and she will ask me a whole lot of questions.