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The Making of Big Love


My daughter Ella + her great-grandma, 1999

This is a story about making a story. Telling the story behind the story might be meta, but art, like the video I created, does not just appear out of thin air. There’s a process behind the passion.


I love it when I’m reminded how connected we are in this world. A few years ago I had the opportunity to coach a speaker for a fundraising gala. At the event, the speaker introduced me to his partner, who is a professional photographer named Krystle Schofield. Krystle does interesting work specializing in photography that captures unscripted, real-life moments.


Years passed and a pandemic happened, shaking up everyone’s worlds, including mine. I’m in the midst of a low-key identity crisis, in a perfect storm of growing weary of health care advocacy, being in the midst of an undiagnosed health problem, and having increased caregiving duties.


I knew it was time for me to try something different to shake myself out of this funk. Despite my troubles, I remain committed to finding ways to amplify health care stories.


Over the past twenty years, I’ve mostly told my stories through the written word. Sometimes I share stories orally when I do presentations and workshops. I’m new to learning how to lean on multi-media and visual arts to share my stories beyond words.


A few months ago, Krystle popped back into my life. I received an email from her inviting me to take a digital storytelling workshop. She was learning to become a Level 2 Digital Storytelling Facilitator with Common Language DST and looking for folks to participate in workshops so she could sharpen her facilitation skills.


At first I was leery. Isn’t digital storytelling an old thing? I (mistakenly) thought that digital stories were just a version of images and audio, akin to narrated PowerPoint presentations. The time commitment was steep – 20 hours over the course of four weeks. I considered the dates – the intensive weekend workshop part of the course happened to be held on a weekend when my husband and son were away on a guy’s trip to Toronto. It was a rarity for me to be in my home alone for an entire weekend. The timing was right. So I took a leap and said yes.


I quickly found out how wrong I was about digital storytelling. Now that I know better, I’d describe a digital story as a short 3-minute video, complete with music, narration, images, graphics and video effects like scene transitions.


Dr. Mike Lang of Common Language Digital Storytelling oversaw Krystle’s facilitator training. He’s a guru in the area of digital storytelling in health care, and describes digital storytelling as both a process and a product. His PhD thesis Emerging Horizons: Crafting Meaning and Cultivating Understanding Through Digital Storytelling studies the digital storytelling experience of young adult cancer survivors.


Dr. Lang has worked with over 800 patients, family members and healthcare providers to help them create digital stories about their healthcare experiences. In particular, he has worked extensively with Alberta Health Services to create the Patient Stories program which uses digital storytelling for patient engagement, quality improvement, and educational purposes.


My digital storytelling workshop was held online. Krystle met me beforehand to explain the process and to encourage me to start thinking about what story I wanted to tell in video form. Then I was to meet the other participants on Zoom and share my story ideas to settle on a final concept.


I’ve told my stories about health care many times. I’ve even written two books about them. To be truthful, I’ve grown weary of sharing them. So I presented the idea of either creating a video out of a poem I had written about patient engagement, or tackling a whole new subject, a brand-new part of my identity – being a grandmother – and write a letter in video form to my 18-month-old grandson Levi.


I pitched the two story ideas to the group and Krystle observed that I lit up when I talked about being a grandma. It was decided – my digital story would be about what I’ve learned so far about being a grandma. I sat down at my computer to write the script for the video, re-energized by this new subject matter. I called my story Big Love.


Most of my previous stories have been shared in public. People sometimes think they know everything about me because I’m honest and vulnerable when I talk about my patient experience. But this letter for Levi was different. I wanted it to be just for him. I was imagining Levi watching the video when he was 8 years old so he could see how much he meant to me during the first year of his life.


My “why” for telling my story of being a grandma was simple yet heavy: I was in the midst of a bunch of nasty diagnostics to see if my cancer had returned. (Happy spoiler alert: all the biopsies came back negative a few weeks after I finished Big Love). No matter what, being investigated for metastatic cancer slaps you in the face and reminds you that nobody lives forever. I didn’t want Levi to forget me after I left this fine Earth.


I trusted Krystle, so I also trusted the digital storytelling process. I learned a lot in the workshops, and I now have a great gift – a new way to share my stories.


Krystle and her co-facilitator Maureen Leier began with the participants sharing impactful moments in their life, moments we would later use to create our stories. We moved to writing our stories that would serve as our narration for the video, and then we embarked on an intense weekend learning the editing program and piecing together our stories into a video, complete with images, music and transitions. Finally, we had a premiere evening where we all proudly showed our videos.


Krystle provided gentle guidance to me. She was unfailingly patient as this old dog (me) learned a new trick (video editing) and was clear in her direction and communications. Because she’s a photographer, she has skills in both the technical and artistic realm, which made her a natural to teach the group the intricacies of the video editing program. Her tender manner meant she was a great coach – she stayed behind the scenes but was there if you needed her. I’d jump at the chance to work with Krystle again.


After 20+ years of storytelling, it was humbling to be reminded that I can always learn more. Words can be just part of a story – digital storytelling layers in more creative elements, like pictures and music – to make a fully-formed and engaging project.


While my Big Love video was created just for my grandson, many participants have publicly shared their caregiving and patient stories. Here is an example of Krystle’s own story about her family.


I can imagine all kinds of settings where their work could be shown to health professionals and students for educational purposes – at health faculty classes, during orientation, to reinvigorate weary staff. Digital stories serve as a reminder about what is important in the world: humanity, compassion and kindness. They give an insight into the patient perspective - about how it feels to be a patient that isn’t found in textbook learning.


Along with education, digital stories can be utilized to prevent storyteller fatigue, so speakers don’t have to share the same story multiple times. Greg’s Wings, the Falling Through the Cracks film, is an example of this – it is a video created to teach about patient safety that shares the story of a young man. It saves his family the trauma of having to tell the story of Greg’s tragic death over and over again.


Organizations can lean on digital stories to share their origin story and the community or participant experience from multiple perspectives. Facilitators work with storytellers to ensure they understand their rights as a storyteller, and set clear intentions for both the experience of creating the story and the use of the story afterwards. Storyteller wellbeing and ethical practice are at the heart of the Common Language Digital Storytelling process. This case study on Rocky Mountain Adaptive is an example of an organization that used digital storytelling as a way to share their “why” as well as the community of experience with their program.


Creating Big Love was therapeutic for me. In the year and a half since Levi was born, I had not made the time to fully consider my new role as a grandmother. Making this video forced me to reflect on my history with my own beloved grandmother and what she taught me about love. It was priceless to have a safe space to explore my own story about both my relationship with my grandma and now my relationship with Levi.


I learned how to be your Grammy from my own grandma. She wrote me letters and took me out for lunch, just the two of us. She showed me Big Love. Big Love means doing things to show that you care about another person. - from the Big Love script


I shed many tears on the weekend I put Big Love together as I flipped through old photos of my grandma and fresh ones of Levi. These were the happy tears of being a new grandma and sad ones missing my own grandmother. We so rarely make the space to fully immerse ourselves in our stories. The digital storytelling process helped me do just that.


I’m grateful to Krystle Schofield for her guidance for me to explore my grandma story and to create Big Love.


Interested in supporting folks to tell their stories in digital storytelling form? I’m happy to answer questions about my experience as a participant.


Krystle offers one-on-one and group digital storytelling workshops for individuals and organizations. More information about her digital storytelling services is on her website here: https://www.krystleschofield.com/digital-storytelling.

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