[00:00:08] Speaker A: My name is Nancy Farrow, also known as Mama Lou, and I'm the founder of Epic Experience.
Epic Experian's mission is to empower adult cancer survivors and thrivers to live beyond cancer.
I hope that as you listen to campfires of hope, living beyond cancer, you find hope, healing and empowerment. Through stories and education, we aim to guide those impacted by cancer and more importantly, offer love and support to anyone out there who needs it.
This is beyond cancer.
[00:01:08] Speaker B: Hello, everyone. This is Gayle, aka Sunshine. Welcome to an episode of caring for Cancer on the Campfires of Hope podcast, where we'll talk with caregivers, patient advocates and those who support cancer survivors throughout their journeys. Today we have Kerry glass with us, and Carrie is from memories live. And I'm not going to tell you any more about that. I want her to tell you all about it as we go. So, Carrie, thank you so much for joining us. It's great to have you.
[00:01:36] Speaker C: Great to be here, Gail, thanks so much.
[00:01:38] Speaker B: So first, why don't you tell us a little bit about yourself, your background. And I always ask people to include one fun fact.
[00:01:45] Speaker C: Okay. My background, I was an art therapist. I learned about art therapy when I was a senior in high school. And I volunteered for an art therapist for a summer and went to college and decided I want to go to graduate school for art therapy. So I knew at age 17 really what I wanted to do, and I knew I really want, I wanted to work with the geriatric population. I always was really drawn to the geriatric population because I didn't really have my grandparents around growing up. I lost one set early and the other set had lived in another country and I didn't see them too often. So I went to college, majored in art with a focus in film and minored in psychology, then went to graduate school for art therapy and went to work at a nursing home right off the bat. Worked there for five and a half years, had the privilege of going to work every day to 400 grandparents who.
[00:02:46] Speaker B: Really, oh, my gosh, that's amazing. I never even knew art therapy. Washington, a major. So that is amazing. And just to make sure I'm clear, like art therapy, like, you're having them draw or paint or create in some way as a form of therapy, that is amazing.
[00:03:03] Speaker C: Absolutely. Yeah. And especially with the elderly, like just even wider variety of things, like tiling and ceramics and the gamut of things and just to kind of stimulate their brains and keep them busy and then help them to kind of express themselves if they needed to express themselves. So I love doing that. And I had the privilege of running a lot of groups, which is when you broke in a big place, you want to, you know, appease the masses. And then I had the ultimate privilege of being able to do a couple of individuals, what we call one on ones. And I would just sit and talk with these amazing people who had stories of either, you know, fourth or fifth generation Americans and what their story was, or people who came off the boat from wherever they came from all over the world and hear their stories that were so rich. And I said, can I. Can we just write these down to one or two of them and create, like, a book? So I would go sit with them once a week and bring my notepad and write it down, then go back to my desk, because this is over 20 years ago, we didn't have laptops, sorry, to date myself. And I would go back to my desk and type it up the story and then print it up, and the next week, go bring it to them and then add more and then type it up and back and forth. And we made two books, had them laminated and bound, and presented them to the families. And the families absolutely loved it. That is so cool of their loved one's story.
I left the Manhattan and the nursing home on the best of circumstances to move out to the suburbs and raise and have a family. I told myself that when my kids were both in kindergarten, then I would go back to work at a local nursing home, which I was volunteering at. And they said, you're overqualified to volunteer. You need to be employed here. And in the meantime, when I was raising my kids, every birthday party, every trip we take, or every special occasion, I would take up my video camera, download it onto the computer, take the best footage of it, take the photographs from that occasion, set it all to music, and make, like, five minute little quick memory movies of these things. And my boys love to sit and watch them.
During that time, I learned of a woman in a neighboring community who passed away from lung cancer. She was 39. She had two kids under the age of five. And being a young mother then, it really struck me that these kids would not know the sound of their mom's voice, not know advice from their perspective, not be able to see where they got their mannerisms from. And if I could take my skills as a movie maker and as an art therapist or an empath and sit with someone and help them to leave a legacy, help them to leave their story, help them to share their advice, and that night, memories live. We was born.
[00:06:05] Speaker B: Oh, my gosh. That's amazing.
[00:06:07] Speaker C: Thanks. Yeah.
[00:06:09] Speaker B: So other. So this woman, she. Did you say she was a neighbor, the woman who had the lung?
[00:06:15] Speaker C: She was just someone in a neighboring town, so I knew of her.
[00:06:20] Speaker B: Yeah.
[00:06:21] Speaker C: And she passed away after. Before I thought of the idea.
[00:06:25] Speaker B: Yeah.
[00:06:26] Speaker C: Yeah.
[00:06:27] Speaker B: Do you have any other connections to the cancer community, or is this.
Well, now, obviously you do through memories live, but prior to that, was there a family member or anybody else that you had a connection to in that way? No, not no connection, but that one understanding. And the interesting thing is you had kids close to her age. You were a young mom. You could understand what those kids would be missing out on without their mom. And so I would imagine that was a huge impetus in carrying this idea forward.
What have you. And so now tell me a little bit about memories live and what you do through that and what you have learned from working with cancer survivors through that work.
[00:07:12] Speaker C: Okay, so how memories live works is I made my first presentation at a local cancer center, and I had to wait to have one, one client. And I originally wanted to be able to open this up to people who were no older than maybe 55 or 60. And I said, how am I even going to word this? You know, how am I going to turn people down? But I really want this for young people who have young kids. Let me just kind of see organically what's going to happen. And naturally, I got what I wanted. The average age of my clients is 55, but I did not gear this to people who had cancer. But I'd say about 90% of the people that I film have had cancer. I definitely filmed many other diseases. So basically, how memories live works. Like, I made that first presentation to a bunch of social workers, and that's still what I do to this day. Oncology or palliative care, social workers are really my biggest cheerleaders, and people who share memories live because I can't really walk into a facility and just hand out brochures room to room. So I depend on mostly social workers, nurse navigators, sometimes doctors, chaplains. And those are the individuals who are able to share memories, live with their patients.
So a social worker will make a referral, send me the phone number, email address, and I'll reach out to that person. Usually that day, I send them my questions that I came up with. And when I came up with the questions, I just simply googled questions kids want to know about their parents, things parents want to share with their kids, questions kids want to know from their grandparents, things grandparents want to tell their grandkids and all those kind of searches. And I came up with 24 pages of questions.
[00:09:15] Speaker B: Oh, my gosh.
[00:09:16] Speaker C: And, yeah, so the first topic was grandparents, then where did they live? What was your relationship with them? What did they teach you, what you love, what they cook, what they cook, what lessons in life did you learn from them? And then on and on. Then parents and another laundry list of questions. And the first few clients I had were shuffling through the pages and I saw that it was great that they had so many choices, but it was a little stressful at the same time. So then I whittled it down to 18 pages, then to eleven. And then I said, I just got to do it on one.
[00:09:54] Speaker B: Yeah.
[00:09:54] Speaker C: Now it doesn't mean that I took out all those subtopics and all those questions. They're in my mind, they're stapled in there and I asked them. So I just give the bare minimum. Grandparents, parents, childhood siblings, on and on and on. I can give you more examples if you'd like. And I tell people, here's the questions and the topics. I want you to look them over. Omit anything you don't wanna talk about, anything that's not relevant to you. Like I've filmed people set up. I don't wanna talk about my ex husband. I had part of my life x let's move on to the next topic, whatever it might be. I encourage people to add topics that I don't know about that they want included. And some people say, kerry, your questions are great. Let's go through as many as we can. Some say your questions inspired me. Let's use a few of yours. And I've created a couple of mine. And then some people say, Kerry, your questions are great, but I'm going to make my own dialogue because I love what you've done. And it got my mind going. And I've created my own dialogue and I tell people there's no wrong way to do this, no right way to do this. We're all unique individuals and that's going to be the end product of every single movie, unique to who we all are. So there's no messing it up. You know your story best. And yes, it's a one shot deal. We do do this once, but this is going to be who you are today in this moment that we're talking. And it works really, really well.
[00:11:31] Speaker B: Yeah.
[00:11:32] Speaker C: So for the first seven years I filmed only in the New York, New Jersey area where I can get in my car and drive to people all those years ahead, people reaching out to me from all over the country saying, I live in California, I live in Colorado, I live in Utah. Can you film me?
A, I don't have the budget, and b, sometimes people are so ill because my focus is people, individuals who have life limiting illnesses so that people sometimes wake up and don't have a good night's sleep and don't feel well. So I can't get on a plane or a train and travel to them. So I figured out a way pre Covid so five years ago of how to film people virtually.
[00:12:14] Speaker B: That's amazing.
[00:12:14] Speaker C: And it works really, really well because thank goodness, everyone has video camera on their phone, and those video cameras are really great quality. So I have people film themselves either on their phone, on their desktop, on their laptop, iPads, or whatever kind of a pad there might be, or if they have a camcorder. And I have a whole system of how they should film themselves. I'm on the phone with them the entire time that they're filming themselves.
[00:12:44] Speaker B: Oh, wow.
[00:12:45] Speaker C: I'm going through filming tips. I'm supporting them. If they get emotional, I'm checking in with them. I'm making sure they're hitting the record button and not taking a photo of themselves.
So. And then I give them, you know, the tips and the knowledge how to share the footage to me because they then share the footage with me afterwards.
[00:13:05] Speaker B: And then you put it all together and.
[00:13:08] Speaker C: Yeah.
[00:13:09] Speaker B: Memory live for their families.
[00:13:11] Speaker C: Yeah. I really don't edit too much. All I do is put in texts, and the text is like a chapter and that talk about the topic that we talk about. So it's not just 45 or 60 minutes of, you know, your loved one talking unedited. It's broken up into chapters.
[00:13:26] Speaker B: Okay.
[00:13:27] Speaker C: And then if they send me photographs and I ask for no more than 50, I create a really nice slideshow at the conclusion of the live footage that we create together. And the slide shows photographs of them throughout their lives with their loved ones set to their favorite music.
And the end product is then emailed to them. When I first started, it was dvd's, of course, you know, and those became obsolete. And then USB drives. And I've had some technical issues or have had some families have technical issues with the USB drives. So now I just email the final product to the families.
[00:14:08] Speaker D: I hope you enjoy this episode of our campfires with Hope podcast. Here at Epic Experience, we make it our goal to serve the cancer community through our collective programs, such as this podcast, our week long adventure camps, regional programs across the country and thrive. VR, a custom virtual reality experience benefiting patients in cancer centers. If you would like to be a part of our community of supporters, please go to epicexperience.org and click donate.
Thank you for listening to campfires of stories of cancer. With gratitude. Wingman, also known as Colin Farrow, executive director of EpiC Experience. Epic Experience is a registered 501 organization.
[00:14:52] Speaker B: So in your work with cancer survivors, what I mean, and I know everyone's different, and they all have different kinds of cancer, and they're at different stages in their journey, can you think of any key lessons you've learned from? I mean, how many do you think you've worked with now, how many people would you say?
[00:15:13] Speaker C: I filmed? Over 300 people.
[00:15:14] Speaker B: Wow. So from those, what do you think have been the top lessons you've learned from the cancer survivors that you've worked.
[00:15:23] Speaker C: With, that humans have, that the individuals that I filmed have had an inner strength that they never knew that they had, and this is what cancer has brought out in them. I've sat with so many people who've said, I'm not going to be able to do this. I'm either too emotional or I'm too sick. I had a gentleman who had, who was on oxygen when I walked in, and he really didn't want me to film him. Actually, I've had two. He don't want me to film them without oxygen on. And they said, I'm going to take this off for as long as I can.
We talked for over an hour and 20 minutes. We didn't film for the hour and 20 minutes, but we talked for over an hour, 20 minutes. And then he's like, oh, my God, I didn't have my oxygen on.
[00:16:12] Speaker B: Oh, my gosh.
[00:16:13] Speaker C: You lose yourself in the process.
You lose what's going on in your body, what ailments you may have, and you're able to, to find the strength to dig deep and just to go through it. I mean, when do we all get to talk about our lives, reflect on our lives, reminisce? And the process allows you to kind of, I don't know if for people who run, get that runner's high, and you just get out of, get out of your head and just, you know, be in that moment that that's kind of what this is like. And I've had so many people who have told me that they're not sure they're gonna be able to get through it, and they do, and they have. Almost everyone says I'm gonna cry, and they don't they find. They dig deep and they find that inner strength and they're able to kind of get through it. So not only just that, but just to get up every day and to move on and to. I've had so many people tell me, like, having cancer is like the double edged sword.
It's a blessing and a curse because it's allowed them to live life in a different and more meaningful way.
[00:17:27] Speaker B: Yeah. Can you think of any cancer survivor stories in particular that really hit home for you that were, I don't know, particularly emotional or touching or anything that really just made an impact on you?
[00:17:47] Speaker C: Yeah.
I filmed a woman who was pretty much my age and had two boys that were exactly my boy's age, and I did not know that going on. I knew she was around my age and I knew she had kids. And just sitting across the couch from her, it was kind of surreal.
[00:18:11] Speaker B: Yeah.
[00:18:12] Speaker C: And listening to her and she was so upbeat and so strong and shared such incredible stories. And her husband was there with her and, like, his strength was just incredible, and she just really embodied just the ultimate strength that I've ever seen. Because I think her kids were.
I think we were eleven and 13, which are really tough. No, ages.
[00:18:44] Speaker B: Oh, yeah. No, that's a tough age.
[00:18:46] Speaker C: Yeah, those were tough ages. And then her husband has been such a champion for memories live. He's, you know, made a couple of, like, selfie videos that I could show at my fundraisers, talking about the positive aspects of memories live. And, uh, he even shared a story that his, his boys. And this was several years. This was several years later. I'm sorry, several years after she passed away. And one of the sections we. One of the things we talk about is college and advice for college. And one of the sons didn't know what to do with college, like, to pick this school or that school, and he's like, let me. Let's. Let's look at the movie and see what mom said.
They looked at the movie and they listened to the section about college, and the answer was right there.
[00:19:41] Speaker B: Oh, my gosh. That is amazing.
How rewarding, I mean, challenging, like you said, to go into that situation and realize that you are about the same age and have kids about the same age. So I'm sure that's. That's challenging, but how rewarding as well for you. And then, I mean, that's life changing for those kids. The answer they were looking for was right there.
[00:20:04] Speaker C: Yeah. I mean, my goal is, you know, to make this for the kids and the families. And mostly, most of the kids a little bit, the spouse, but mostly the kids. And to help for them to look back five years, ten years, 15 years, learn something new at a different phase of their life about their parent and get advice that you may be going to see differently as a ten year old to a 15 year old, to a 25 year old. And then the process of making it for the individual that I'm filming is so cathartic, and they're so grateful. People tell me, I dreaded wanting to do this. I dreaded you coming. I dreaded calling you. And once we finished the filming, they're like, I can't believe I wasted so much energy worrying.
[00:20:54] Speaker B: Yeah. Putting it off.
[00:20:55] Speaker C: It's such a wonderful process.
It's something different. We don't do this every day, so it's kind of like the unknown is often daunting and it's so cathartic for them. And people tell me I've wanted to leave jewelry or this or that, but. Or write cards, but doing this was just so easy and such a wonderful process.
[00:21:18] Speaker B: Yeah, well, and I would imagine, too, you're talking about end of life. You're talking about very sobering things. And I would imagine for people to get up. For them, it's an admission that I am not going to be here forever. Right. Which none of us are, but for them, it's much more imminent. I would imagine that's difficult.
And we don't.
[00:21:40] Speaker C: We don't talk about their disease. If people want to, 100%, but we don't talk about the disease. But, yes, the reason that they are making the movie is because right near the end of life. Yes.
[00:21:54] Speaker B: Is there anything else that you would want to share with someone listening that I haven't specifically asked you about?
[00:22:00] Speaker C: The most important part is that memories live is a service that is free of cost.
[00:22:08] Speaker B: That's amazing.
[00:22:09] Speaker C: When I first started memories live, I knew that people would have so many stacks of bills, and I didn't want anyone who wasn't able to for this to be able to do it. So I have a fundraiser once a year. I have grants that come and go, and that allows me to do this. For the last 14 years, filming over 300 people, equal amount of men and women, all over the world. I filmed in Canada. I even had someone in Australia.
I didn't do the talking, but the friends filmed the person, and I edited the footage. So, um. Yeah. And happy to. To, um. To do this for anyone, anywhere.
[00:22:52] Speaker B: Awesome. Well, one fun question I'd like to end with is marshmallows over a campfire slow and steady or flamin crispy?
[00:23:01] Speaker C: Slow and steady.
[00:23:03] Speaker B: Yes, that's right. Well, carrie, thank you so much. I really appreciate you taking the time to talk to us about memories, life, and for sharing some important life lessons that we can all learn from the cancer survivors that you've worked with. So thank you very much.
[00:23:20] Speaker C: Thanks so much for having me.
[00:23:22] Speaker B: Until the next time we gather around the campfire, everyone keep living beyond cancer.
Thank you for listening to this episode of Campfires of Hope. Living beyond cancer. For more information about epic experience and our programs or to donate, please visit our
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[00:24:04] Speaker C: America police still are not family men's bright we will rise once again close.