When Julie Guido, a Research Administrator in Roswell Park’s Clinical Research Services department, first learned about Life Recorded, a program that helps individuals become storytellers and record a narrative about their life, she instantly thought of her mother, Florine, who was 87 years old at the time and a skin cancer survivor.
"My mom has been called a storyteller her entire life. As soon as I heard about the program, I thought 'That’s my mom! We have to get her to do it,'" says Julie.
Julie reached out to the Life Recorded Program Coordinator, Alicia Larson, and a few weeks later, with her video camera and a list of pre-arranged topics and questions, Alicia joined Julie and Julie’s daughter at Florine's home in Hamburg. “As soon as the recording started, Florine was a firecracker,” says Alicia.
Florine told stories of her upbringing on the east side of Buffalo, with many of her family members living on the same street. She filled the room with laughter telling the story about meeting "the good lookin' fella with a nice head of hair" at a church dance, who would later become her husband of 57 years (despite the scandal it was that he wasn't Catholic like her family). Florine recalled stories about her friends, her children, and about how she was the first in her family to get a high school diploma. "I didn't know how we were ever going to keep the recording to 40 minutes," recalls Julie. Alicia was honored to stay and record a bit longer than usual, knowing how priceless these moments were.
That special day for Julie and her family became even more meaningful when Florine passed away unexpectedly three months later. "I’m very glad that we were able to record that conversation with my mom," says Julie. “While I knew that she wasn’t going to live forever, I was shocked how quickly her health declined. Grief stricken, I was unable to listen or view any of the recording for a long time.”
But after nearly a year has passed, Julie was pleasantly surprised when Alicia reached out to ask if Life Recorded could use a clip from Florine’s interview as a marketing piece for the program.
“My mother would have loved knowing that her story is being used to inspire other families to document their stories and capture a piece of their loved one’s life. After seeing a short piece of the interview, I went home and viewed the full interview for the first time that evening. I honestly thought that hearing my mother’s voice again would make me sad, but it has had the opposite effect and has helped me move past my grief and hold on to the wonderful memories of her life that she shared on the video.”
The special memory that Julie and her family now have of Florine is the exact reason why the Life Recorded program was created.
From Grief to Gift
The Life Recorded program was made possible through a donation from the Jayne and Phil Hubbell Family. During her own battle with cancer, Jayne Hubbell discovered the benefits of recording her life stories. After she passed, her husband, Phil, worked with the Spiritual Care Department at Roswell Park to create Life Recorded, so others may have the same positive experience. Since its founding, Life Recorded has helped over 120 patients and families record their stories.
“As the program grew, we have been so pleased to open it up to everyone from within the Roswell Park family, including patients at all stages of their cancer journeys,” says Alicia. “Everyone has a meaningful story to share, from those who have been newly diagnosed with cancer to our 15-year Ride For Roswell fundraisers.”
How the Life Recorded Program Works
The Life Recorded program reaches out to patients while they are in the hospital, during chemotherapy sessions, at information tables, and based on referrals from front-line Roswell Park staff members.
“Once we hear that a person is interested, we call to learn a little bit about who the storyteller is, and if there are any particular stories they'd like to share,” says Alicia. “No two recordings are the same, so with this background information, we’re able to guide the storyteller through the journey they would like to be told.”
Recordings take place anywhere the storyteller chooses — at the patient’s home, hospital room or other space on the Roswell Park campus. Life Recorded has traveled to nursing homes, retirement communities and hospice facilities. Once a comfortable place for an intimate conversation is decided upon, the storyteller can choose to be interviewed by someone they have a personal connection with such as family members, caregivers or friends. Or, they can add a few more people to the recording, making it a family bonding activity or a way to mark a milestone celebrated by friends.
A friendly and professionally trained facilitator (click here to get to know a little bit about the Life Recorded program’s facilitators) will help you prepare for your recording and answer any questions you may have along the way. Your facilitator will be present during the interview (and can lead the interview if desired), to be an expert and compassionate guide as you experience the positive benefits of storytelling and listening.
Once complete, the facilitator will condense the interview down to roughly 40 minutes, and create DVD or CD copies for the storyteller to share with their family members and friends.
“Participating in the Life Recorded program is a gift to yourself and for those who you care about most,” explains Alicia. “Talking about what’s important to you, your hopes and your accomplishments can bring you unexpected joy, while talking about painful experiences can bring some measure of healing. No matter what you choose to include in your recording, the true essence of your self will shine through and that’s truly a beautiful thing.”
To start planning your audio or video recording with Life Recorded, call Roswell Park’s Spiritual Care department at 716-845-8051.
