News / USA

StoryCorps Gives Voice to Critically Ill

People with life-threatening illnesses record, preserve and share their stories

Gail Moore and her mother Dorothy recorded their StoryCorps Legacy interview at the older woman's home, where she now lives under hospice care
Gail Moore and her mother Dorothy recorded their StoryCorps Legacy interview at the older woman's home, where she now lives under hospice care

Multimedia

Audio
Adam Phillips

People faced with life-threatening illness are often moved to leave some sort of lasting personal oral history for their loved ones.

StoryCorps is an organization which provides people and their families with the opportunity to record, preserve and share their stories with loved ones, preserving those stories on CDs and in the archives at the Library of Congress.

Now, the group has created the StoryCorps Legacy initiative. Partnering with hospitals, hospices and cancer centers, it helps people with life threatening medical conditions record their stories.

StoryCorps staff member Perri Chinalai takes a break in the chapel inside the Mollie and Jack Zicklin Hospice Residence in Riverdale, New York.

It's a facility where people come to die in peace but Chinalai explains it is also a place where life is celebrated and expressed through storytelling and careful listening.

“The motto of StoryCorps is that ‘Listening is an act of love,’ and we really believe beautiful things can happen when we actually sit down with one another to have a conversation and listen to what we have to say to one another," she says. "Sometimes when you are sharing your story and you know that people out there will be listening to it in the future, it brings some validation to all of the life that you have lived."

Reign Voltaire and his niece, Jennifer Pena, are recording her stories. Pena, 32, has suffered from tubular sclerosis since childhood and breathes with the aid of an oxygen machine.

Jennifer Pena and her uncle, Reign Voltaire, found a way to cherish memories while also discussing difficult subjects during their StoryCorps Legacy experience.
Jennifer Pena and her uncle, Reign Voltaire, found a way to cherish memories while also discussing difficult subjects during their StoryCorps Legacy experience.

Voltaire finds that the seemingly trivial memories they share - a trip to an amusement park or Thanksgiving meals - acquire a special luster and significance.

“Even though it is a simple memory of ours, I felt it was something to honor, because it is her legacy," Voltaire says. "It is something we will always remember.”

Sometimes the conversation can be intensely intimate, and things that might have been left unsaid, are not. Gail Moore's mother, Dorothy, lives in her own home, her daughter is her caregiver.

"I just want to say what a privilege it is to be your daughter," Gail tells her mother.

"I am privileged to be your mother," Dorothy says. "We have had a very, very happy existence."

Then Gail asks her mother what she thinks about the notion of dying.

"People should think about dying because it only gives them so much time to make their mark on this world," Dorothy says. "If you did not know there would be a limit to how long you were going to live, when would you get started?"

For veteran facilitator Debra Parmet Sondoc, that sort of wisdom helps make her StoryCorps volunteer work worthwhile. She helps set up sessions at Memorial Sloan Kettering Cancer Center in New York.

“It is life affirming. People talk about appreciating every moment and every day," she says. "Being able to be so strong and be so positive and find the people in their lives that are there for them, it is a wonderful thing.”

The deep listening that StoryCorps promotes can also help health professionals. Palliative care specialist Dr. Daniel Spurgeon often works with terminally ill patients at Huntington Hospital in Pasadena, California.

After facilitating and conducting storytelling sessions, he's realized a patient’s words and demeanor can offer vital clinical information that laboratory tests cannot.

"And the more present and the fuller my heart can be, the more I can do this work," Spurgeon says. "I feel that when I engage with a person's story, I am going beyond their identity as a patient and engaging in their personhood. And I think there is where real compassion, there is where the 'being' of healing is, rather than doing of healing."

That has been the experience of the thousands of people who have been touched by StoryCorps: that authentic conversation, in which one person speaks from the heart, and another truly listens, is a rare and precious gift.

You May Like

Reports of Mass Murder on Mediterranean Smuggler’s Boat

Boat sailed from Libya with 750 migrants aboard and arrived in Italy with 569 More

Video New Thailand Hotline Targets Misbehaving Monks

Officials say move aims to restore country’s image of Buddhism, tarnished by recent high profile scandals such as opulent lifestyle, drug and alcohol abuse, as well as child sex abuse More

Study: Dust from Sahara Helped Form Bahama Islands

What does the Sahara have in common with a Caribbean island? Quite a lot, researchers say More

This forum has been closed.
Comments
     
There are no comments in this forum. Be first and add one

Featured Videos

Your JavaScript is turned off or you have an old version of Adobe's Flash Player. Get the latest Flash player.
Astronauts Train in Underwater Labi
X
George Putic
July 25, 2014 7:25 PM
In the world’s only underwater laboratory, four U.S. astronauts train for a planned visit to an asteroid. The lab - called Aquarius- is located five kilometers off Key Largo, in southern Florida. Living in close quarters and making excursions only into the surrounding ocean, they try to simulate the daily routine of a crew that will someday travel to collect samples of a rock orbiting far away from earth. VOA’s George Putic has more.
Video

Video Astronauts Train in Underwater Lab

In the world’s only underwater laboratory, four U.S. astronauts train for a planned visit to an asteroid. The lab - called Aquarius- is located five kilometers off Key Largo, in southern Florida. Living in close quarters and making excursions only into the surrounding ocean, they try to simulate the daily routine of a crew that will someday travel to collect samples of a rock orbiting far away from earth. VOA’s George Putic has more.
Video

Video Not Even Monks Spared From Thailand’s Junta-Backed Morality Push

With Thailand’s military government firmly in control after May’s bloodless coup, authorities are carrying out plans they say are aimed at restoring discipline, morality and patriotism to all Thais. The measures include a crackdown on illegal gambling, education reforms to promote students’ moral development, and a new 24-hour phone hotline for citizens to report misbehaving monks. Steve Sandford reports from Bangkok.
Video

Video Virtual Program Teaches Farming Skills

In a fast-changing world beset by unpredictable climate conditions, farmers cannot afford to ignore new technology. Researchers in Australia are developing an online virtual world program to share information about climate change and more sustainable farming techniques for sugar cane growers. As VOA's Zlatica Hoke reports, the idea is to create a wider support network for farmers.
Video

Video Airline Expert: Missile will Show Signature on Debris

The debris field from Malaysia Airlines Flight 17 is spread over a 21-kilometer radius in eastern Ukraine. It is expected to take investigators months to sort through the airplane pieces to learn about the missile that brought down the jetliner and who fired it. VOAs Carolyn Presutti explains how this work will be done.
Video

Video Treatment for Childhood Epilepsy Heats up Medical Marijuana Debate

In the United States, marijuana is classed as an illegal drug by the federal government. But nearly half the states have legalized it, to some degree. Proponents say some strains of marijuana might have exceptional health benefits, for treating pain or inflammation in chronic conditions such as cancer, multiple sclerosis and epilepsy. Shelley Schlender reports on a strain of medical marijuana developed in Colorado that is reputed to reduce seizures in childhood epilepsy
Video

Video Airbus Adds Metal 3D Printed Parts to New Jets

By the end of this year, European aircraft manufacturing consortium Airbus plans to deliver the first of its new, extra-wide-body passenger jets, the A350-XWB. Among other technological innovations, the new plane will also incorporate metal parts made in a 3-D printer. VOA's George Putic has more.
Video

Video AIDS Conference Welcomes Exciting Developments in HIV Treatment, Prevention

Significant strides have been made in recent years toward the treatment and prevention of HIV, the virus that causes AIDS. This year, at the International AIDS Conference, the AIDS community welcomed progress on a new pill that may prevent transmission of the deadly virus. VOA’s Anita Powell reports from Melbourne, Australia.
Video

Video IAEA: Iran Turns its Enriched Uranium Into Less Harmful Form

Iran has converted its stockpiles of enriched uranium into a less dangerous form that is more difficult to use for nuclear weapons, according to the United Nations’ Atomic Energy Agency. The move complies with an interim deal reached with Western powers on Iran's nuclear program last year, in exchange for easing of sanctions. Henry Ridgwell reports for VOA from London.

AppleAndroid