Empowering Rare Disease Families: A Conversation with Krystle Schofield

In the world of healthcare, storytelling has become an integral tool for communication, advocacy, and education. Join our conversation with Krystle Schofield, a dedicated Common Language Digital Storytelling Facilitator with a profound personal story of her own, as she unveils the transformative journey from documentary family photography to digital storytelling. Her compelling narrative, filled with the catharsis of the storytelling process and enriched by diverse perspectives, invites us into a world of creativity and storytelling that begins with an image or a free-written core of a story.

Continuing our insightful discussion, Krystle shares her experience in digital storytelling workshops, bringing to light the varying levels of training, and the importance of co-creating ethical storytelling frameworks. Drawing on touching narratives, like Amelie's story of growing up as a competitive gymnast with congenital heart disease and Sue 's heartfelt letter to her grandson, we delve into the profound impact of these stories on families and communities. The conversation takes a hopeful turn as we explore the potential of digital storytelling as a unifying tool for the rare disease community. Listen in and discover the power these stories possess, and the transformative change they can bring.

About Our Guest
Krystle Schofield is a digital storytelling facilitator and photographer based in Victoria, British Columbia. Through her own experience as a rare disease mom, she knows that digital storytelling can be a positive and connecting experience for both the storytellers and audience. She knows that sharing the reason we show up in ourselves and our work will invite others to do the same. Krystle works with individuals and values-based organizations to create authentic imagery and tell impactful stories.

Website: www.krystleschofield.com
Instagram: @krystleschofieldphoto
LinkedIn: @krystleschofield

CLICK HERE  to watch a Digital Story made by Krystle.

• Shift - A digital story by Krystle
• From the Heart - A digital story by Amelie

Read Sue Robins' blog The Making of Big Love about creating a digital story with Krystle.

About Leading Through Stories
Everyone has a story to tell—and what we do with that story can create lasting impact. Every episode, Leading Through Stories, helps unravel the how and why of digital storytelling with host Kristy Wolfe.

Life is made up of meaningful moments—which ones do you want to share?

This podcast is presented by Common Language DST, digital storytelling facilitation training for health and wellness changemakers.

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Transcript

Krystle Schofield: 0:00

A lot of people walk into the group workshops thinking, you know my literacy with technology is not where I think it needs to be to create a short film, but it's not as challenging as you know you might perceive and there's so much support there going through the process.

Kristy Wolfe: 0:16

Welcome to Leading Through Stories, a podcast that explores the how and why of digital storytelling. My name is Kristy Wolfe and each episode I connect with storytellers or common language digital storytelling facilitators to learn more about the health and wellness stories they are creating and sharing. Life is made up of meaningful moments. Which ones do you want to share With me? Today is Common Language Digital Storytelling Kr ystle Schofield. Now, Krystle and I have a history. We actually met at a photography conference called Real Life in Portland, Oregon, and people connected us because we both had children with medical diagnosis, so our first time meeting was actually going out for dinner and just learning about each other. Since then, we have done some photography work together. We have also been doing lots of digital storytelling. So, Krystle, I've described a little bit about you. Will you tell us more?

Krystle Schofield: 1:10

Yeah, yeah, absolutely. We met and connected around documentary family photography, which is something we both still do, and then our sort of medical parenthood. I am based in Victoria BC and I am a documentary family photographer and rare disease parent and also a digital storytelling facilitator through Common Language Digital Storytelling. That's how we've all connected and I've been working primarily with the rare disease community around storytelling to this point.

Kristy Wolfe: 1:41

Let's jump back to talking about you becoming a Common Language facilitator, Starting with your first story. Why did you end up doing your level one training?

Krystle Schofield: 1:50

Well, Kristy, you introduced me to it and I couldn't stop talking about it.

Krystle Schofield: 1:56

I got this phone call from you and you were like there's this thing and there's this person who's doing this work and I really think it's. There's something there, and I think watching you go through some of the journey was what really connected me to the why behind digital storytelling. I think it was a natural next step. With the photography work we do, we're documenting families. It's really about capturing real moments. We're not posing. We're. We were waiting for those moments of connection. That happened naturally and we're bringing those into the frame and sharing those with families and there's a real emotional impact in that, and I felt like digital storytelling is actually a way to bring words to images and empower people to really create a complete visual narrative that shares an impactful story.

Kristy Wolfe: 2:47

We have both talked about that idea of photographers will often put together a slideshow of images to share with a client afterwards, and that does something. But the words and the music behind it brought it to a totally different level, and so I remember talking about how much I thought this was like a next step for my photography, and instead of it being a next step for my photography, it kind of became the thing that took over my photography.

Krystle Schofield: 3:11

Yeah, absolutely.

Kristy Wolfe: 3:13

And tell people about your first digital story that you created, because during the level one training, when somebody is taking that training, they will create a story for themselves and then they will also work with a volunteer within that training period to create a story with somebody else. What was your first story all about?

Krystle Schofield: 3:31

Yeah, so my first story I created in a workshop as a volunteer storyteller I was not actually, I was not a facilitator at that point. I jumped into it really with. I didn't have a specific story in mind when I came into the workshop and it was what came out and I think it was the story about my experience of transitioning into a world of rare disease, parenthood, basically having my daughter, and it was about five years after she was born. So one of the things for me about doing it at that point is that I was, I think, ready to tell. That was the story that needed to come out at that point and we talk a lot about that storyteller readiness and that sort of encompasses.

Krystle Schofield: 4:12

The ethics and the wellbeing aspect of doing this work is is we're not always ready to tell the story. And so I was able to step into that space and that was the story that came out and it was a way for me to really process an incredibly complex experience. That was a completely different world, completely different language, you know, a huge impact in in the timeline, I guess, of my life. So it's funny because right before we met I watched my story again just to kind of remember it. You know, I know it so well, but I watched it and, like watching it, I just felt so satisfied. Oh, I love that and it made me.

Krystle Schofield: 4:51

It's like I instantly felt calmed by it, the fact that it's there and it's out there, and one of the things about creating that story for me was that it was almost this like a high after and it was like I've got this experience out in a creative way. I felt really good about it, not sort of living in me and cycling through my soul over and over again. Right, it's there and it's now there for other people to see. I can share it when I want to share it. I've shared it in you know, a couple different contexts. You know I have it on my YouTube channel live, but I've also shared it with the screening with the rare disease foundation, where we had three different stories that we shared there. One of geneticists shared his story, we had an adolescent patient with rare disease share her story and then I shared mine as a caregiver and it was just such a wonderful, well-rounded experience to see all of those different perspectives in one space.

Kristy Wolfe: 5:43

I think those perspectives is really a key part of it not being all the same story necessarily. A healthcare provider, a patient, a caregiver are three totally different areas. You mentioned that you felt calm after watching your story, but what was the process of creating the story like?

Krystle Schofield: 6:02

it wasn't so calm. It took me actually a long time to make this story I it came out in the narrative right away, like I wrote it very quickly. But the process of pulling together the images as a photographer and mom who documented part of my you know way of processing my experience in the NICU, my daughter was in the NICU for three months and then we had sort of many years of surgeries and medical follow-ups that were quite intensive after that, and so I was sort of snapping pictures all the way along to document it, and I, once we left the hospital, I stopped sort of doing anything with them, as many of us do. They sat on my computer, and so this was my second time of really going through those images and being selective of which ones made sense for the story, and I think you know there was a part of me that kind of had to stop and take a pause as I was making that story, and then I came back to complete it later on when the time was right.

Kristy Wolfe: 6:59

The process is not always linear, well, and I find that I often will actually have an image in mind and I don't know if we've had this conversation or if you do this, but when I build a story, it's usually based off an image that I build the story around, instead of starting with the words, which maybe some other people do. Do you find that's the same for you?

Krystle Schofield: 7:21

I think I know you know what. I don't typically start with an image in mind which is really interesting. I actually I start with sort of more of a free writing experience. I think that's my way of getting into a story and just to kind of see what's on the page and which what's sticking out at me. There's some like real moments there that make sense to build a story around, or some connections that I hadn't thought about before but I. Once I've got that, then the images become really important. They can be used as a metaphor to emphasize your words. But I also think there's a lot of power in, you know, showing what the experience was, showing emotion in your images, showing the space that you were in at that time. In one image there's so many stories that can be told, so it's really interesting to kind of play around with the sequencing and how that can impact the story. Well, in both of us.

Kristy Wolfe: 8:09

I find, through our style of photography, really work to normalize what it's like to be in hospital, and so I find, when I watch stories of yours, so many things resonate from me out of them. But I'm also wondering, as you've now worked with other people, because you're a level one trainer, which is one on one creation, and now you're a level two trainer. So, workshops, what have been some of your experiences or stories that you would like to chat about?

Krystle Schofield: 8:33

I have a couple that I've done well, I guess in the last year in a bit.

Krystle Schofield: 8:37

One I did with the rare disease foundation that was the one I was talking about that we screened.

Krystle Schofield: 8:40

It was with an adolescent storyteller, Amelie, who lives with 22Q deletion syndrome and she's also a competitive gymnast, and so I created this story with her at the same time as she was sort of thinking about her future as an adult, you know, graduating from high school, transitioning out of her gymnast career, thinking about what she wanted to do with her life, next also graduating out of pediatric care where she had spent months and years she's been years in hospital and through surgery and just illness, and so that was a really interesting parallel for her to take that time during that transition period of her life to reflect on her childhood experience.

Krystle Schofield: 9:22

We met over Zoom four times to create her story and I watched her sort of have to pause and think about how she felt about certain experiences she had. It wasn't sort of right there for her. I think a lot of it was a bit foggy and maybe just had become part of life, so being able to really embrace it and find some super impactful moments In conversation as we were working through her story, she brought up that there was this one time at the gym, when she was about to have another heart surgery, where she just realized what if I don't have another birthday?

Kristy Wolfe: 9:57

Yeah.

Krystle Schofield: 9:57

And that you know, as a teenager, to have that realization in an environment where she didn't really speak about her rare disease or the heart surgeries that she had to have, that moment she, you know, was really sort of a big realization, I think, for her and the strength that she has, because she was able to pull herself together and, like, find friends and communities to support her in that moment and get back on the floor and keep, you know, doing what she was doing, what she loves.

Kristy Wolfe: 10:27

All of those things came across in her story. So I've seen Amelie's story quite a few times. We screened it last Heart Week as well, so she was one of the storytellers we brought on for a virtual screening. That was all about like the cardiology side of things. But as a parent of a kiddo with congenital heart disease and knowing quite a few families with 22Q, it really hit me. That story really got me, and hearing it from her perspective because, again, a lot of the time we work with adults and it's often caregivers talking about their experience and that was a different perspective that I hadn't got to hear.

Kristy Wolfe: 10:57

Yet If Amelie's listening to this, I have to tell you that part of what happened with our boost up pitch with the adults with congenital heart disease was because of the story she created, and every time either you or I have showed that story, we've talked to her about it and made sure she's comfortable, because that's one part of screening stories. That is, that storytellers story. They don't need to share it anywhere and Amelie has been really open with sharing it with different people and I've really appreciated that Absolutely. Yeah, so I know you worked recently with Sue Robins and Sue is going to be at a conference that I'm going to when this podcast goes live. We'll be just finishing up. Sue wrote a blog after you worked with her. Her story is not public. It was something that she did more for herself, but she did talk about the experience. Will you tell us a bit about that story and that experience?

Krystle Schofield: 11:43

I did a level two training workshop with Maureen Leier, another facilitator. Sue joined us for that workshop as a storyteller. I was very excited that she was going to join us because Sue is a writer and a longtime healthcare advocate. She was also joining us at a really interesting time in her life because she was experiencing fatigue from advocacy. She needed to sort of step away from the healthcare narrative. She came in there with the open mind to learn a new way to tell stories, also with the idea, the understanding that she would be learning editing, video editing and these techniques. Because in our workshops we work with storytellers to teach not only to write the story but to teach how to actually create the story. So the storytellers are actually creating their own stories.

Kristy Wolfe: 12:32

So I'm going to stop you there just for a second and explain that there's three levels of training with common language digital storytelling. Level one is co-creating one-on-one, where the storyteller is like the director and us facilitators work as the editor and creating it for them generally. Level two, which is what Krystle's talking about right now, is when you are teaching a workshop and each of the participants are creating their own story, so they're being taught how to do this and supported through doing it, but that they're actually creating their own. And then level three training is what I am currently doing and that is to train other facilitators.

Kristy Wolfe: 13:06

And when we talk about facilitators, Common Language Digital Storytelling has a group of people who are all trained. Some are connected to organizations, some are just on their own. Like Krystle and I, we work with different organizations, but it's kind of a community of practice. We get together and do mentorship meetings and do further education in what we're learning about and how we're doing digital storytelling. But that's been something that's been really amazing. So Sue was creating her own story because she was one of the volunteers in a level two workshop. Thank you.

Krystle Schofield: 13:36

Exactly. Thanks for clarifying that. So we did this virtually we get a tutorial, but then there's a lot of hands on through the process as well, a lot of helping. We share screens, we help with the editing and all of the things as well.

Krystle Schofield: 13:47

So she joined and decided she wanted to do a story that was a love letter to her grandson. She wanted something a little bit lighter and it was amazing to watch her go through the experience because she was also having an undiagnosed healthcare situation. She felt a little bit like she needed to share some words with her grandson in case something did happen. So there was some heartfelt moments in there and in that processing and I know through it she was thinking about him as an eight year old. The really neat part about doing the story with Sue is that she incorporated some playfulness into the visuals of her story. She added neon signs and things like that. That might be a little bit more interesting to an eight year old, along with her beautiful words about what it was to become a grandma, to reflect on her own experiences as a mother, to see her daughter become a mother, and her sort of wishes for him and their family going forward. So it was a really beautiful story that she created.

Krystle Schofield: 14:57

You know she did write a blog about the experience and for her I think it was gaining a whole new understanding about what digital storytelling was.

Krystle Schofield: 15:05

It's a very commonly used term and I think there are a lot of different ways that digital stories are created and her perception was that it was sort of a slideshow put to music and maybe some words.

Krystle Schofield: 15:18

But understanding that there's a real, really grounded process to the way we create digital stories, the ethical framework I mean Sue has been through a lot of storytelling experiences in healthcare the sort of way that we check in with our storytellers, ensure that they're benefiting from the experience, allow them the space to take a break if they need, and then we also have that continuing consent. So we're always following up through the future, even once the story is created, to make sure that they still give consent to sharing it. So I think for her the impact was, you know, just learning about this new method and being able to incorporate visual arts into storytelling was a really impactful experience for her and she could do it. You know she did it. I think it's like a lot of people walk into the group workshops thinking you know my literacy with technology is not where I think it needs to be to create a short film, but it's not as challenging as you know might perceive and there's so much support there going through the process.

Kristy Wolfe: 16:16

And I think that people all work at different levels. So, Krystle, I would really like to put the link in for Sue's blog. It's called the Making of Big Love. Sue Robins has also written a couple books. One is called Ducks in a Row Healthcare Reimagined. I'm also going to add into the show notes Amelie's story that you have permission to share and the link to your digital story as well. Yeah, you're comfortable with all of that.

Krystle Schofield: 16:39

Yes, absolutely, and I know you know. Just a note on Amelie's story there I mentioned how she had a hard time sort of speaking about her rare disease and she has shared it at three screenings. She has it live publicly on my YouTube site. Her brother has shared it. I have shared it on social media. So there's just a really amazing sort of feeling of empowerment with her story and how open she is to sharing it and inspiring others with it.

Kristy Wolfe: 17:03

I love that and it really has. I used it in the training with my adults with congenital heart disease to show them an example of a story, and it was really impactful for them as well. All right, so if you're going to create a new digital story, what moment would you focus your digital story around?

Krystle Schofield: 17:19

That's a good question and that's always the challenge. Right Is finding the moment. I think the next story I want to create I'm going to shift it a little bit. I'd like to run a group workshop with a group of rare disease families, so caregivers and patients. I see a lot of potential to use digital storytelling as a tool to bring the rare disease community together and that for our family, that was something that was incredibly important as we entered into our experience with our daughter.

Krystle Schofield: 17:48

I think there is maybe a bit of a gap there. There isn't a lot of sort of mental health community support for rare disease families in Canada that I can see at the moment. There is a lot of advocacy happening around you know, centers of excellence and orphan drugs and rare disease strategy for Canada, which is amazing. I think there's room for digital storytelling there to bring people together and then to be able to use these stories for education, for quality improvement initiatives. That happens throughout the healthcare world. So that's sort of the next set of stories or story I want to tell would be around that and having that full circle experience of community connecting, because that's so important. We know that rare disease families feel isolated often and we have so many. We talk about commonalities in digital storytelling. We have so many commonalities and I think digital storytelling can bring people together around those commonalities so that families are not feeling so isolated and they're also able to process their experience and then share their stories. So there's sort of this empowerment that can happen. I love it.

Kristy Wolfe: 18:53

And I think that it is absolutely attainable, and I think your own digital story about being a parent with rare disease is helpful for individuals and organizations to see that. So when you asked your volunteers to be part of the training, what did you tell them about yourself so that they knew and kind of felt comfortable with joining in?

Krystle Schofield: 19:14

That's a great point. So I always talk about, of course, like the training and ethical framework that we've learned, but I talk about myself as being a rare disease parent because there is a connection there, there's sort of an understanding, like a common understanding, that we've all been through something and that we will handle, you know, storytellers with gentleness and grace and empathy through the process, and I think it allows people a little bit of space to open up, be able to be vulnerable and work through the storytelling process. So definitely, I share that. And then, of course, you know my experience as a photographer as well. All of this work that I'm doing allows me to enter these sort of emotionally sensitive spaces. So is there?

Kristy Wolfe: 20:00

anything that you wanted to talk about that I didn't touch on that. You feel like the last thing. The last word I need to have is I know we can both talk about this a lot.

Krystle Schofield: 20:12

You know, I think one of the things that I think that really sticks out for me about digital storytelling is that it is both a therapeutic process, but it also can be a creative process as well.

Kristy Wolfe: 20:27

You touched on this earlier but like the number of people who are surprised with what they created, who thought that they wouldn't be able to do like the imagery part or like tell the story well, and then they see it all as a final product and you can see they're like just the joy at having created something like that, and so I think that's the power in what we do as facilitators as well is support people at the level that they need to create a story that they are proud of and that they are comfortable with. Yeah, crystal, thank you, as always for having conversations with me. It was a pleasure to have you on Leading Through Stories.

Krystle Schofield: 21:00

Yeah, thanks for having me. Thanks for creating this.

Kristy Wolfe: 21:02

Krystle digital toryteller with our collective with Common Language Digital Storytelling. All the links to the work she does will be in the show notes for this and we will be sure to share. Everyone has a story to tell. We would love to hear from you. We always include a link to the stories we're talking about in the episode show notes. Please let us know what resonated for you in today's episode. Your comments will be passed on to the storyteller. You can email us at LTSpodcast@gmail. com , or find us on Instagram at Leading Through Stories. Leading Through Stories is sponsored by Common Language Digital Storytelling facilitator training for health and wellness change makers. Don't miss the next episode. Subscribe to Leading Through Stories on your favorite podcast platform.