StoryCorps Legacy: Memorable Conversations With People Who Have Serious Illnesses

Five years ago, days away from turning 94 and a few months after being diagnosed with esophageal cancer, my mother joined our family for a birthday/Thanksgiving on Cape Cod. It seemed the right moment to do what we should have done years earlier — ask Mom about her life. Her great-grandchildren asked the best questions, which we recorded on my phone.

The inspiration to tape Mom came from StoryCorps, the organization founded by public radio producer Dave Isay that, for nearly 20 years, has recorded conversations (archived at the Library of Congress), preserving family stories, with excerpts heard on NPR's Morning Edition. For 40 minutes, one person shares stories and the other asks the questions and listens.

What I didn't know when we recorded Mom's stories was that since 2011, StoryCorps has also been helping families capture "Legacy" conversations with people of all ages with serious illness. It does this by partnering with dozens of hospitals, pediatric centers and hospices. StoryCorps Legacy has recorded nearly 2,500 stories in 25 languages with participants ranging in age from 4 to 105.

But what do you ask a loved one who is seriously ill or a family member who loses someone close to them? StoryCorps Legacy has a list of "Great Questions," though you can come up with your own.

Dr. Ira Byock, the palliative care advocate who's among the StoryCorps Legacy Advisors, suggested this question: At this time in your life, what nourishes your heart/soul/spirit?

"Storytelling and listening are acts of celebration, ways of pausing to recognize the intrinsic value of something shared, the stories of people we've loved…it's also an act of nurturing community," says Byock, founder and chief medical officer of Providence Institute for Human Caring in Gardena, Calif.

The Rev. Nancy McCranie, director of volunteer and bereavement services at Hospice Austin and a StoryCorps Legacy administrator, is also a great believer in the power of storytelling. 

"StoryCorps Legacy trained us to record conversations and challenged us to do ten interviews a month," says McCranie. "I love listening to people's stories, so I would ask colleagues: 'Can I be the person that listens to your story?' And often they would say: 'I don't have anything interesting.' And I would say: 'You know, I bet you do. Would you try it?' And I knew Jan did." 

Did she ever.

In 2015, Jan Phillips, a bereavement counselor at Hospice Austin, sat across from McCranie at its in-patient facility, Christopher House, to tell her story. "It's a small, warm space with a good feeling to it, a very spiritual soulful place, lots of living and dying happens there," says McCranie, an ordained Presbyterian pastor.

It turned out that Phillips' journey to grief counselor passed through some jarring losses in her own life.

In her StoryCorps Legacy conversation, Phillips described to McCranie how 15 years earlier, she and her husband received the devastating news that their only child at the time, 17-year-old Ian, died in an accident in New Zealand on a school trip.

"We were here in Austin, and we got that dreaded 2 a.m. phone call where you just think this is a joke. It wasn't," she told McCranie.

Then, Phillips became overcome with emotion. "Our lives got turned upside down and we had to figure out what to do…I use the illusion of a snow globe being turned upside down, shaken violently. It takes a long time for that snow to settle. And when it does, it's in different places; can't go back to what it was," she said.

After Ian's death, Phillips and her husband Marty, a ship captain, adopted a nearly 7-year-old girl (Tino) and her 5-year-old brother (Lance) from Samoa. They would visit the grave of their older brother they had never known.

But just three years after bringing Tino and Lance home to Texas, Phillips lost Marty to a rare blood disorder. And it was this moment on the StoryCorps Legacy recording that will stay with anyone who listens:

"The kids came to the hospital every afternoon and spent time with their dad and they got there shortly after he died." With her voice breaking, Phillips then said: "And my son crawled into bed with his dad and just held him and I couldn't believe that this little eight-year-old had such love and such presence and such a need to comfort his father. So, my kids had learned a lot in their really short lives."

In our recent conversation, Phillips told me, "It's a moment that will never, ever leave me. When he crawled into bed with Marty, his daddy was already gone and Lance had this look on his face. It wasn't terror or fear or sadness. It was just he had a daddy."

Because her therapist so ably helped her with the loss of her son and then the loss of her husband, Phillips decided "I have to do what he does," adding that "it was a fabulous model for my counseling."

Realizing the power of therapy, Phillips went to graduate school in counseling, interned with Hospice Austin and then joined the staff, listening to those experiencing a version of the grief she encountered and then dispensing practical advice. 

She tells others experiencing loss: "Crying is permitted and encouraged, but don't forget the water. Hydrate."

Also, Phillips says, "Grief has no timelines. You won't be done in a week, six weeks or six months. Closure is a a myth. What closes? This is my experience, and most of my clients have the same experience — there's a hole in my heart and it will always be there. The one thing that I know is that it was very, very jagged and sharp when it happened. Now it's softer and not as acute, and that's the word I use."

Phillips adds: "I never say you get better, but it will always be with you because this is part of your life's tapestry. The fabric that we're weaving together."

Byock believes it's time to change our thinking about death.

"Too often, we reduce the experience of illness and dying to suffering or its avoidance or alleviation. But in fact, as difficult and as unwanted as it is, dying is a part of human life," he says. "And for many people, the potential for growth and well-being persists through the very end of life… This phenomenon — the potential to be well to the very end of life — deserves to be the next big thing in in American culture."

I asked the three people I interviewed, who've spent significant time around death and dying, what else they can recommend to others with family members or friends who are near the end of life:

McCranie: "If your loved one is sick and you're afraid they don't have much time, go visit them if you don't live near them. What's the worst thing that can happen? You'd have to go visit them again. I think sometimes we think we're supposed to wait, and we sometimes don't get that option."

Phillips: "You don't wait for an invitation. You see the opportunity, you take it. The more you can tell someone 'I love you, I care about you, you're important to me,' that's what make us human."

Byock:  "Our aspirations for people's care and their well-being have often been impossible to meet because of COVID — the separation, visitation limitations. There's no way to diminish that. But technology — tablets, Zoom, FaceTime — [can help us in] making sure that people are delivered from their anonymity in their illness and their dying and… making sure there is nothing critically important left unsaid."

As Perri Chinalai, StoryCorps' managing director of learning and engagement, says:" It's never too early to do a conversation like this. Just do it."

If you're interested in creating a StoryCorps Legacy conversation, you can use the StoryCorps App to help record an in-person conversation or StoryCorps Connect to record a conversation with someone unable to do an in-person session.

Less than six months after my family recorded our conversation with my mother (and learned that she and Dad met at a carnival), Mom passed away. Among the many gifts she left us, none can compare to those recorded stories. Anytime I get the urge, I push a button on my phone and it's as though Mom is still with us.