Episode 3

Constanza Roeder, Founder: Hearts Need Arts; Childhood Leukemia Survivor; Humanitarian; Singer

Constanza Roeder is the founder and CEO of Hearts Need Art: Creative Support for Patients and Caregivers and host of the podcast Arts for the Health of It.

As a singer, adolescent leukemia survivor, speaker, and thought leader in the field of Arts in Health, Constanza is on a mission to humanize healthcare through the arts. 

Constanza is the recipient of the 2018 Graceann Durr Humanitarian Award and was selected as one of the Top 100 Healthcare Visionaries by the International Forum on Advancements in Healthcare for 2021.

Her work has been featured in various publications such as ThriveGlobal, Authority Magazine, Ticker News, National Association of Teachers of Singing, and the cover of MD News Magazine.

 Constanza has a powerful, touching story and I think you’ll enjoy meeting her.

Transcript
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stanza, welcome to the narrative podcast. Really

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appreciate you joining me today.

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Thanks for having me. I love the whole premise of this podcast.

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And I'm, I'm happy to be here.

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Love for you to share with my listeners, your mission and what

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you're dealing with hearts need arts, and the whole background

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there. And then we'll pivot back to how you got there.

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Okay, um, yeah, so I'm the founder and CEO of hearts need

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art, creative support for patients and caregivers, and are

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artists, musicians, writers, and go into healthcare spaces to

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work with patients and caregivers, to ensure really

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that no one suffers alone when they're dealing with a life

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altering health challenge. So we do that through bedside music,

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concerts, and bedside art activities and bedside, those

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art activities often turn into like window painting, painting

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the windows of our patients. So that like real quick, sorry,

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I'll just, I'll add some stories as we go along. There is a

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patient recently who was just diagnosed and our artists,

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Hannah went into work with her, and her husband was there, and

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they were talking and getting to know each other. And they told

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Hannah that, hey, we were actually supposed to be on this

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Caribbean vacation. Like right now, we were supposed to be on a

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beach, but instead, we're here in this hospital. And so Hannah

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painted a tropical beach scene for them on their window in her

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hospital room, where she's going to be for several weeks while

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she starts her treatment. And, you know, the arts have that

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ability to take us out and give us well, we can get all into

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that. But anyway, I just I just love that story. I think it's

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really cool. And then of course, bedside writing as well to help

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people tell their stories. And the whole goal isn't to produce

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really wonderful pieces of art, but to invite people into the

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process of expressing themselves creatively, which in itself is

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beneficial. It is healing, engaging in the arts, reduces

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pain levels, and anxiety and depressive symptoms. It's a

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catalyst for human connection, reducing loneliness, these are

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all things that are detrimental to our health and negatively

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impact patient outcomes. But so often they those issues go

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unaddressed in health care spaces, especially with adult

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patients, there's a lot more resources for pediatric

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patients. But we specifically work with adults. And we work

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with some teams as well, but mostly adult patients to provide

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this type of support.

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It's interesting, I have a friend who few years ago,

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unfortunately lost his six year old son to pediatric brain

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cancer. And he started his own foundation, you know, obviously

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a devastating thing for any parent to go to. And he started

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his own foundation and did a bunch of things does a bunch of

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things to raise money for pediatric cancer research. And

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part of it was the I, when I found out was how little funding

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there is for pediatric cancer research as a comparison to

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other things. But as you're saying, with the resources, he

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part of their foundation actually started a group, their

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foundation was called the Pabla Foundation. And there they

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started a group that's called Pavlov Shutterbugs, which is

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equipping the kids with cameras, so that they could express their

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art, they could develop, you know, they could photograph

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their surroundings, they could do whatever and kind of teach

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them how to express things visually, that are probably

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meaningful to them, you know, so that there you'll see pictures

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out of a hospital room. But you'll see a picture on a park,

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you'll see a picture of a beach. It's just interesting. But it's

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interesting to hear you say that there's resources because it's

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almost the reverse. There's resources for kids, but there's

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not a lot of funding, but there's art no art resources.

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For adults. It's

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there. Yeah, there is this imbalance where there's a lot

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more research being done with on adults, which some of that is

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just because it's there's a lot more hurdles to go through to

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enroll children and medical trials and for good reason,

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because they're a vulnerable population and their specific

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structures in place to protect them. There's structures in

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place to protect adults as well. But yes, there's a larger number

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of adult patients that are enrolled in clinical trials.

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There's also a larger number of adults that have cancer, but the

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vast majority of supportive resources go to support this

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small number of pediatric patients and is it okay if I

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start weaving in my story? Absolutely. So I'm, I'm a, I'm a

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adolescent leukemia survivor, and there was so much there were

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so many organs and people that wanted to, like, do stuff for me

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and give me stuff and do things that it was kind of

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overwhelming. And wonder, like, so grateful, right? Yeah. But

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also was a little bit overwhelming. Because I think

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sometimes giving us this services kind of this two edged

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sword, we generally all get there because we're, we have

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discovered some sort of need in our own lives that we want to

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close the gap for. And so sometimes, but sometimes people

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stay in that area where they kind of have, we kind of get our

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ego wrapped around giving, where I need to give this to you to

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fill this void in myself. And sometimes that stops us from

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asking the question, Am I really helping? Am I really addressing

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a problem that really needs to be addressed? Am I really

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utilizing resources in an impactful way. And I've felt as

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a receipt on the receiving end of that it feels kind of icky.

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Because you can kind of sense that you're not really here for

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me. You're here because you need to, you need me to perform for

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you and say like, oh, yeah, thank you so much. Oh, my gosh,

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like, anyway, so I experienced that as a pediatric leukemia

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patient. And going back a little bit, I, I grew up in Santa Cruz,

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California, I'm the oldest of five kids. And I was

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homeschooled for most of my school years. And then when I

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was 13, I was diagnosed with leukemia. I went through 130

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weeks of chemo. And I've been cancer free since 2002. So I'm

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revelations for nine years, actually, my nine year end of

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treatment anniversary is oh, I just had it and I didn't like do

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anything.

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That's a good sign, though. Right? Well, you busy. That's

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right. That's

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it. Yeah, but it's not so prominent in my mind anymore. I

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mean, 19 years, like, anyway, anyway, so um, went through

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treatments, I went on to study music and psychology in college,

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and met my husband, he was in the Navy, he got stationed in

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San Antonio, Texas, where we are now. And after we got married, I

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moved here. And I wanted to do something to kind of give back

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to the cancer community. And I found out that we have one of

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the largest inpatient oncology units in all of South Texas, and

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really this whole region. And I was like, Great, that sounds

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like a great place to start. So I started volunteering. And I

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had never been in an adult hospital before much less than

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an adult oncology unit. And I was like, huh, this is a little

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bit different than what I'm used to. It was there and there were

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no activities. And there were very few. Like there was always

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when I was in the hospital, there were always people coming

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in and out of my room trying to cheer me up and give me things

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and like, which, again, is great because we it's really important

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that people don't suffer alone. And yet, so many of these

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patients were suffering alone. And so many of these patients

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had family members that lived hours away that could not afford

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to take a day off work in order to come and stay with their

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loved one. They had to keep working in order to pay for the

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medical bills in order to keep the medical insurance. And so a

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lot of these patients weren't much older than I was when I

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finished treatment. And it was I'll use the word horrific, it

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is inhumane. What we do to to patients. There's a study a

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while back about where they took a group of rats and they

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injected them all with with cancer, which Thank you rats for

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your sacrifice. Yeah, for science. But they split them

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into two groups. And in one group, they put rats in

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individual cages by themselves. And in the other group, they

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kept them in kind of a communal rats Wonderland. And they

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measure tumor growth, tumor growth over time. And the rats

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that were isolated. Their cancer grew at a significantly higher

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rates than those that were in community.

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Interesting. And what do our hospitals

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look like? Look like these little boxes that we put people

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in and when we don't address the whole person. medical outcomes

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aren't as good and the their patients aren't as compliant

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with with their health care providers because they're scared

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and they're lonely and they can't make as good decisions for

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their health. So I saw all of this, and I knew that it didn't

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have to look this way. And I did the only thing I knew how to do,

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which was saying that always helped me when I was in the

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hospital. And so I started just going room to room and singing

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for patients. And it was incredible to see the

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transformation that happened just by providing this small

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gift of beauty and human connection. Because that's

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really what the arts are. They're, they're a catalyst for

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human connection. They help us connect in a deep way with

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ourselves with others with our Creator. That's how the arts

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have been used across across time. And it was so impactful.

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And since this is a storytelling podcast, I'll tell you the story

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that really kind of the inciting incident for me to start my

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organization. One of the patients I was working with, her

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name was Gracie and she was a young adults, patient and young

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adult, or the a YA, the adolescent and young adult

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population is actually one of the most at risk demographics in

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cancer right now. And it's 15 to 39 year olds, we're talking

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about the rate of enrollment in clinical trials that this group

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has the lowest representation of in clinical trials, so their

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prognosis aren't as good in their cancers behave

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differently. And and it's a complicated time of life to have

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cancer. And so anyway, I met Gracie, I think the day after

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she was diagnosed, and when I went in her room, she was

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sitting on her bed, just huddled up in a ball, just really flat

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effect. Wasn't like, barely looked up. But I came in. And I

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went in and I introduced myself and I said, Hey, would you like

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to hear some music today? And she said, No, I'm not really an

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artsy person. I don't really listen to music even. And I was

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like, okay, that's fine. Like, I'll be here next week. If you

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want it then great. But as I was leaving, she stopped me. And

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she's like, well, actually, I think if you know, a Christian

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song, I might like to hear that right now. And so I sang

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his is on the sparrow. And I know he watches me. He is. And I

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know he watches me.

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And as I think of the verses of the song, this, like, calm came

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over the room, and I watched the tension slowly release from her

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body and tears come to her eyes. And when I finished she looked

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up and just said thank you. And that was it. And I got to work

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with Gracie a lot because she lived in the hospital with us

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for about six months. While she was in treatment, the way her

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her insurance was if they discharged her, her insurance

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wouldn't let her be readmitted. So she had to stay in the

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hospital for the entire length of her treatment, while her

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family was far away. And so she was alone a lot in the hospital,

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but her I know. It's awful, right? Absolutely. So but her

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favorite day was Wednesday because I would come and sing

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for her. And we had a group for young adults who would get

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together and share stories and music together. And it was

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really wonderful. And but finally she went to remission

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and she got to go home and we were really excited for her. But

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her cancer came back just a few months later, she had a fairly

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aggressive form of leukemia. And so she was back in the hospital

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as soon as I found out she was there I rushed to her room and

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and expecting devastation because this is like the worst

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nightmare for cancer survivors that coming back. Yeah. This

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time I found her sitting on her bed, smiling. And she's like, Oh

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my gosh, stanzi. I'm so glad you're here. I have I want to

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show you something. And she pulled me over to her bed and

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she rolled up her sleeve. And there on her arm was a brand new

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tattoo that she had designed herself of a sparrow. And she

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said, I'll never forget that first song you sang for me. And

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I know now that no matter what happens, he's watching over me.

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Wow. Right so I cried for like three days. Like what do you say

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to? Um, and that's and I want to say like that's not a testament

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to like, oh my gosh, I'm so amazing. Like she got a tattoo

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of the song. Like that's a testament to the The Divine holy

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love that moves through us when we show up in heart spaces for

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people. I didn't do anything, especially spectacular. I just

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showed up for her in that space. But

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going back to the point that you made early on, you know, you

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came in with a heart to help her, as opposed to just showing

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up to perform. You were right. I mean, so she and I think that

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that resonated to her that you weren't. And who knows who else

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might have showed up at some point prior and came in to

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perform for her. And she intuitively read that but you

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came in and didn't do that. You said, If you don't want to hear

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me sing, I'll leave. Yeah. And that's something for me. So

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it's an important I'll get to that in a second about like,

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kind of how we train our artists for this work, because it's,

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it's different than you might think. But yeah, that that

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floored me, of course. And unfortunately, they we weren't

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able to get Gracie back intermission. But before she

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went home on hospice, she called me in a room again. And she

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like, grabbed my face. And she was like, we need more art, and

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music, and writing. And we need more reasons to get out of our

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rooms and out of our isolation, because we need to remember the

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reasons why we are alive. As much as we need the things that

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are keeping us alive. She made it very clear that while she

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appreciated that I was there once a week that it was not

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enough. And that she she knew that there were 1000s of

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patients that were going to come after her that needed more of

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this. And how do you argue with that, I figured out how to start

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a nonprofit. Because I didn't know how to do art, music, and I

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didn't have time and space to do all those things. So that's when

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I started my nonprofit in 2016. And now, because of Gracies call

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to action 1000s and 1000s of people have been impacted by the

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arts by this, this woman who doesn't really artist didn't

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really think of herself as an artist or didn't really even

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listen to music that it changed her that profoundly and now has

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gone on to change 1000s of lives.

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That's an amazing story. I am I have a son who's now 28. And

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when he was 11, we found out that he had a brain tumor. And,

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you know, it all turned out great. It turned out that he it

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was cystic it wasn't cancerous. They didn't know that until he

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went into neurosurgery two days later a day later, and had it

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taken out. And they were doing pathology in the operating room

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and running out and telling us and and he was living in

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Tennessee and I had just moved to Georgia. And just that was

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225 miles and he was in the hospital for a couple weeks.

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That distance was so hard as a parent, even knowing that his

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outcome was a good outcome. He didn't have anything there was

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nothing malignant about what he had. It was just recovering from

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surgery. And and then I experienced with my dad, my dad,

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I grew up in California not far from where you grew up my dad

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had had, he had a couple different forms of cancer, and

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unfortunately passed away a few years ago. But he was in

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Southern California. I was out he I live in Atlanta. So I was

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in Atlanta. And so and he was my mom was gone. It was just him.

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And I couldn't be there. And he you know, he would he wouldn't

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even tell me sometimes when he was in the hospital, because he

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didn't want to bother me. He didn't want you know, he didn't

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want me to worry. You have your own life to live. I don't want

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you to worry. But I think now as I'm hearing you describe it, I'm

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just It hurts to imagine that him sitting in this very

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clinical area by himself because I was the only real family close

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by as he was suffering like this without anybody really providing

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him joy or insight other than what he would see on television.

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And it's such an amazing thing to think that you're able to

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fill that void for people.

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When you're not you hit on something really important that,

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you know, a lot of times the focus is very much on the

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patient, but cancer illness, it affects the whole system and

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affects professional caregivers. It affects the family members,

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siblings, you know, uncles, aunts, you know, whoever is

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connected to that person is affected and what we hear a lot

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so all so all of anyone that's in the hospital has access to

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our programs, no matter who they are, where they are in that

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triad. But what we hear a lot from our family caregivers is

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how relieved that they felt that when they couldn't be there or

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when they were burned out and had nothing else to give or no

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other energy to entertain or maybe lift their spirits like

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they're just we're dry. Yeah, that our artists were there to

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help to fill in that gap. Like you said,

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yeah, that's I mean, I luckily we had a close friend of my

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dad's who my wife and I are still good friends with who

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lived nearby and she would go and visit him. And not even not

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just when he was in the hospital, she helped take care

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of him for many years at his home, but you know, like, it was

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so difficult, being away being remotely Apple thing, and I was

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worried about him. But I was also dealing with the emotions

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of it myself. And it was it's, you know, I just can't imagine

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that with something in a more severe way, or a girl like that.

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And then I'm thinking, as you're talking about it, I'm thinking

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about, how's it been the last couple years when like, couldn't

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like, you couldn't even go in the hospital to a certain

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degree, right? I mean, it's gotten, I mean, I've counted my

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lucky stars that I haven't had anybody in a hospital. During

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this pandemic, my mother in law fell and broke her hip at the

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beginning of the pandemic in and she was in a nursing home, where

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actually was one of the first places a rehab facility after

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she broke her hip, one of the first places that that got hit

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with a wave of COVID in February of 2020. Luckily, she was fine.

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But you know, we were isolated for her, my wife couldn't go see

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her, her brother couldn't go see her. And I just think that what

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you're describing then added on to this pandemic, and the fear.

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And the isolation had to be even worse.

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Yes. Yeah, it was pretty, pretty awful. We kept in contact. So

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we, we were our program was suspended, along with everyone

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else's programs in March of 2020. And couldn't go in at all?

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Well, I think the back we were able to go with special special

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permission, we were able to go in near some of the staff

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entrances, and we painted murals for the staff during the

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beginning of COVID, to kind of boost morale, but we couldn't,

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you know, be on any patient units. Patients couldn't leave

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their rooms, no visitors zero. Staffing was low, because they

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were being pulled in all different directions. It was, it

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was awful. And there are some there are some patients that we

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worked with before that were in the hospital all the way

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through, that just described how, how horrible it was. And

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it's interesting now, you know, at the beginning, like we didn't

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know what we were dealing with, we didn't know how to treat it,

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like it just was a mess. So, you know, drastic called for drastic

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measures. But when I talk with hospital administrators, now

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they, they're like, huh, we're not going to go back to that

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ever. Like, it's too it has too much of a high cost on, on, on

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patient outcomes. Actually, ironically, that, you know, in

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trying to protect them. We, we worsened their outcomes in a lot

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of ways. So that, like broke our heart, the whole pandemic, but

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we we, in two weeks, we had redesigned all of our programs

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to be virtual. So everything was on our website. So anyone that

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could get to our website could schedule appointments directly

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with our musicians, with a writer with with a with an

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artist and work with the with them through zoom. And that

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allowed us to support people all over the country that were

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isolated, was mostly patients that were at home that weren't

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really that weren't in hospitals, because most of the

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patients that are in hospitals, really feel crappy. And they're

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not like, it's why we like walk in their rooms because they

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don't have the bandwidth to or the energy to go on a website

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and sign up for time. Like you could only do that if they had

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help. Yeah. And then we we supported different we provided

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artists for different support groups around the country that

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were virtual, that were struggling with maintaining

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engagement, because people were dealing with Zoom fatigue in a

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really serious way. But they really needed community because

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that that that support group was their lifeline. And so they

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bring us in to to bring some fun and joy and something new to re

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engage people. And we also started a podcast, during this

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time to help elevate some of the amazing stories and research

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that's being done in the field of arts and health. You know,

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we're not the only group that does this type of work. There's

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lots of groups around the country that do that are doing

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such beautiful, amazing work. But yeah, we were out of the

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hospital for 14 months. And marginal there. Yeah, about 13

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and a half, 14 months. But we were able to go back in earlier

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this year. And it's been this explosion of of growth because

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there's this explosion of need. I mean, the need was always

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there but people are like more aware of the need because we all

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collectively have experienced what it's like to be stuck in a

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box by yourself for long periods of time. And the burden the

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anxiety, the depression the the toll that that takes on our

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mental, physical, emotional health. And so they're like, oh,

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yeah, this sucks. So

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yeah, I would imagine if nothing else, people became more

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empowered to just say that it sucks, right? I mean, like

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everybody experienced it. And so everyone can relate to it. We're

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not all going through a cancer diagnosis or in the hospital,

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but at least everybody has a sense now of what it means to be

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isolated to not be able to see your family and your friends and

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get that that human interaction that we all live for.

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Yep. And not have access to the arts. Yeah, yeah. No concerts?

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No. Um, no theater. No, you know, Dancehall is no, you know,

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any of those things that we use to connect with each other. None

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of that.

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Yeah, it's weird. So, I, we've recently gone to two concerts.

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The first two since post pit, I wouldn't even tell why she

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didn't use the term post pandemic, but since lockdowns

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and things and they were both outdoor concerts in an

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amphitheater, and they required COVID vaccination to even get in

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probably a safe environment as you're gonna possibly be in and

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I have now developed me, I've like nothing, knock on wood,

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nothing wrong with me health wise, other than just, you know,

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age related degradation of myself. I have developed social

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anxiety, like I'm comfortable being there, I'm like, I get

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there. And I'm, I look at everybody like is that the guy

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that's gonna cough on me? Is that the guy that and it's like,

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I don't want to be that person. Oh, and it's like, and I sit

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there and go, um, you know, I don't think I really have any

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mental health issues. But man, it did affect me in that way. I

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can't imagine dealing with then a debilitating disease diagnosis

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at the same time. How hard that would have to be. It's just it's

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staggering to me to think that way.

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Yeah, my mom was diagnosed with breast cancer last year and

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middle of all this. That was fun. Yeah. It was, it was also

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really interesting, really experiencing cancer from the

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perspective of a family member, a family caregiver. And it gave

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me a whole other level of appreciation for what we do.

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Because I know like, all you know, all the like, you know,

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how to be empathetic and hold space for people when they're

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when they're suffering and to. You know, I know that all like

Unknown:

the quote, right things to do. But man, when it's your when

Unknown:

it's your mom, when it's your loved one, you're dealing with

Unknown:

your own crap, too. Yeah. And I felt that, like, I need her to

Unknown:

feel better, so that I don't feel as crappy. And that made me

Unknown:

really, like I said, Really, a new level of appreciation for

Unknown:

what we do. Because I think sometimes when we go in as

Unknown:

strangers, like, there's kind of this clean slate, I don't have

Unknown:

any agenda for you, I don't need you to be happy or sad for me.

Unknown:

I'm just here to hold space for you where you are, like that how

Unknown:

important community is around people that are dealing with

Unknown:

serious illness. I think sometimes people are scared when

Unknown:

someone in their community is diagnosed with a serious

Unknown:

illness, because they're afraid of saying the wrong thing, or I

Unknown:

that's uncomfortable, or what if I do something stupid, like

Unknown:

whatever. And so they don't show up. And we need to show up for

Unknown:

people and families when they're going through this because

Unknown:

there's some sometimes a role that you can play as a friend,

Unknown:

as a community member, that is, might not be immediately

Unknown:

accessible for someone that's really close to them. And, and

Unknown:

same thing, people that are really close to that person they

Unknown:

they can show up for for a patient in a way that no one

Unknown:

else can. So everyone plays a role. And we just need to have

Unknown:

first I think we need to educate people better about suffering

Unknown:

and about how to how to hold place for suffering, the

Unknown:

inevitability of suffering, like, we're all going to die

Unknown:

like this is just a thing that but we pretend it doesn't exist.

Unknown:

And then when it happens, we're like, shocked. Yeah, it's like,

Unknown:

well, we've really failed. Society has really failed you

Unknown:

if, if when bad things happen, it shocks us, like what in the

Unknown:

world has has made you think that that nothing bad can ever

Unknown:

happen? Or the evil one you're you're not and I think we're we

Unknown:

have this privilege in our you know, in middle class America of

Unknown:

kind of being insulated from, from suffering and so that when

Unknown:

it does happen, we're completely ill equipped and I think we have

Unknown:

a lot to learn from people of color that are constantly in

Unknown:

states of dealing with oppression and suffering people

Unknown:

in in different patient populations and survivors of of

Unknown:

illness of horrific things. I think we have a lot to learn

Unknown:

From from them, so that we're more prepared to face hard

Unknown:

things that will never be happen in our lives.

Unknown:

Going back to something you talked about earlier with the

Unknown:

example of Gracie. And I'm sure there's probably not the only

Unknown:

one or I guess it's not the only one, how difficult is it to deal

Unknown:

with that patient when when they when they say they're goodbye,

Unknown:

when they're when you know, you've helped and you've know,

Unknown:

you've, you've been there for them. But then there's that

Unknown:

moment when she's going to hospice, and she's not coming

Unknown:

back. And that's got to be a really hard thing in terms of

Unknown:

dealing with grief, because you've invested time in a

Unknown:

relationship and it was a relationship. But that's got to

Unknown:

be a very difficult thing to deal with.

Unknown:

Yeah, and yeah, where to start to answer this question. So many

Unknown:

layers, that's, um, well, first off, we work with other patient

Unknown:

populations besides cancer, but with our cancer populations.

Unknown:

That patients that are in my backup, most cancers treated

Unknown:

outpatient now, you go in and out of a clinic to receive

Unknown:

infusions, mostly or at home. So patients that are admitted to

Unknown:

the hospital are either dealing with a complication with severe

Unknown:

side effects with metastatic disease with more serious

Unknown:

diagnoses. So there's about a 70% mortality rate on our

Unknown:

oncology units. So 70% of the patients that we work with

Unknown:

eventually die from their cancers. And that's incredibly

Unknown:

challenging. Yeah, I can't imagine a lot of the focus of

Unknown:

the training that we do with our artists is how do you live in

Unknown:

this in this space, without it, destroying you, and, and being,

Unknown:

like flooding out and being toxic in your personal life,

Unknown:

because that's a skill, that's a skill that you have to learn.

Unknown:

And the first, like, eight months that I was doing this

Unknown:

work regularly, I pretty much cried every day, whether I was

Unknown:

in the hospital or not, like there was just this. And some of

Unknown:

that was it, there was connections to my own trauma

Unknown:

that I was having to face every time I went in, like sometimes I

Unknown:

would call my mom on my way to the hospital, like on the edge

Unknown:

of the panic attack, like trying to like help let her breathe

Unknown:

with me and maybe sing a song together or something to help me

Unknown:

regulate my nervous system. So that I could, so I can be

Unknown:

present when I do go in and work with patients, I'm not bringing

Unknown:

my own junk with me, but then also having to learn how to

Unknown:

leave it out the door. So it's this combination of constantly

Unknown:

having to deal with your own crap by constantly having

Unknown:

because it brings up stuff that's in you, that that is

Unknown:

triggered by that environment. So I, through many years of

Unknown:

counseling, to to work through some of my own traumas so that I

Unknown:

couldn't go into that space without having a panic attack.

Unknown:

It doesn't make it easy, but it makes it doable. And but it's

Unknown:

this it's this double edged sword again, it's this paradox

Unknown:

where it's the most it's the hardest work and it's also the

Unknown:

most beautiful work. I mean, the the sacredness of walking that

Unknown:

thin space with people when they're deep asking questions

Unknown:

dealing with questions of their mortality and of their faith and

Unknown:

belief of love in family. Were really all the can I use

Unknown:

profanity? We're all the bullshit is just stripped away.

Unknown:

You know, I I like to say that like bullshit dies. A quick,

Unknown:

painful death on the oncology. Yeah, cuz it just, it just

Unknown:

strips it away to your to like, what is the raw core essence of

Unknown:

being alive and being human? Yeah. And when it's all stripped

Unknown:

away. The thing that I found that, you know, I've seen such

Unknown:

deep pain and I've experienced so much loss. I've known

Unknown:

hundreds and hundreds of people in my life that have died. I've

Unknown:

seen the depths of pain. And what I've found is that love

Unknown:

runs even deeper. That love is deeper than even the deepest

Unknown:

sorrow. And that's a gift that you You wouldn't necessarily

Unknown:

understand and internalize on such a deep level. And once you

Unknown:

see it, yeah, lets you see it with all everything stripped

Unknown:

away and at the core at the bare bones, we're here to love. Yeah,

Unknown:

that's what we're designed for we're, we're here to, you know,

Unknown:

learn to love ourselves, others and our Creator. Like, that's

Unknown:

how we, that's how we live in, in freedom and in, in in harmony

Unknown:

with with our worlds.

Unknown:

And it's but unfortunately, we're very much attached to, to

Unknown:

an end, not an in with, understandably very attached to

Unknown:

things in our world that maybe don't matter as much. And when

Unknown:

they're stripped away, it's incredibly painful. So going in

Unknown:

to a hospital and forming a relationship, forming

Unknown:

relationships with people that you know, are probably going to

Unknown:

die. It takes courage every time, it takes courage to step

Unknown:

in and say I'm, it is worth the risk to enter into alongside

Unknown:

this person and walk with them wherever their journey may take

Unknown:

them, that it's worth the rest because love is worth the risk.

Unknown:

So you obviously are a singer and your voice was beautiful.

Unknown:

And you saying earlier here? Are you doing the charity work or

Unknown:

the hearts need arts work full time? Is it part time? Are you

Unknown:

do you have a singing and music career that goes in parallel to

Unknown:

this?

Unknown:

Yeah, so um, so after college, I spent many years singing

Unknown:

professionally and I did musical theater and a little bit of

Unknown:

opera and some solo work and recorded a couple things like

Unknown:

recording was never like really my favorite thing. I love live

Unknown:

music. And so did that for many years. And in the early days of

Unknown:

when I it was just me kind of going to the hospital, I would

Unknown:

bring like caskmates from shows I was in or bandmates or

Unknown:

whatever. And we would do little vignettes on the show. Yeah, we

Unknown:

will put that we put on tape, we put our chairs in the hallway.

Unknown:

And we call them Porter concerts. We still do art scene

Unknown:

art. Um, but yeah, so I was for many years, I was doing it. Kind

Unknown:

of at the same time. I'm also a voice teacher and I have been

Unknown:

for many years. And that's kind of my first love, I love. I love

Unknown:

helping kids discover their voices. It's such a profoundly

Unknown:

spiritually transformative experience when it happens when

Unknown:

you free someone's voice from from the stress and the trauma

Unknown:

and the pain that we so much so often holds in our voices. And

Unknown:

then when I get when it's freed, and they, they figure out how to

Unknown:

use their voice and express themselves through music, it's,

Unknown:

it's, I love it, I love it, I still do it. So I still teach.

Unknown:

But as I was working in the hospital, I just felt more and

Unknown:

more called like, this is where I'm supposed to be. And it just

Unknown:

was my favorite place to sing like it made every other

Unknown:

performance I did seem gray. Like it was like being in boxing

Unknown:

in the hospital was like Technicolor, and everywhere else

Unknown:

was gray. And I was that was a cue for me. So I really like

Unknown:

only seeing in the hospital now. Well I take the back I'm wearing

Unknown:

a scarf today because I am singing at an event. And it was

Unknown:

either curlers or the scarf that you're gonna see with the scarf.

Unknown:

Um, so it's just here in there that I performed in public. But

Unknown:

um, but yeah, I singing in the hospital, and it challenged me

Unknown:

as a musician in kind of surprising ways. And I was

Unknown:

classically trained, and like I said, did a lot of musical

Unknown:

theater singing in church growing up. So that was more

Unknown:

kind of what I had in my repertoire. But that's not

Unknown:

necessarily that's not music, that's really music that

Unknown:

connects with everyone, like people have different musical

Unknown:

tastes. So I had to retrain my voice to learn how to sing

Unknown:

different styles of music, I had to learn different styles of

Unknown:

music. I don't necessarily do them like amazingly but I know

Unknown:

enough to kind of get by so that I could respond to requests from

Unknown:

patients like what kind of music connects with you because the

Unknown:

music that to patient preferred music is kind of the term in

Unknown:

this in this field. It it has a different effect than listening

Unknown:

to unfamiliar music. And there's benefits to both but they're

Unknown:

different. But the sense of kind of comfort and connection and

Unknown:

that sense of feeling seen and heard really comes from someone

Unknown:

standing in front of you and singing when your favorite songs

Unknown:

you love. So there's a quote by arneg arburg Houston Author and

Unknown:

he says that, to love a person is to learn the song that is in

Unknown:

their hearts, and to sing it to them when they have forgotten.

Unknown:

That's what we get to do.

Unknown:

Well, I'm gonna have to take that one to heart, my wife and I

Unknown:

have vastly different tastes and music and a lot of ways. And so,

Unknown:

like she'll say, Oh, these are my favorite singers are like, I

Unknown:

don't even know who they are. So I'm gonna have to figure out and

Unknown:

I'm gonna learn, and I'm the world's worst singer. So me

Unknown:

learning them and then singing them would not be a good thing

Unknown:

either.

Unknown:

I think it's metaphorical. But it's like literal,

Unknown:

better, better. I'll hit I'll hit play on on my on my iPhone

Unknown:

and just didn't stream it to our it will be fine. Perfect. At the

Unknown:

end of every podcast, what I'm trying to do is ask people some

Unknown:

probing questions a little bit to just learn about them

Unknown:

separately. So first one I want to ask you is, what's your

Unknown:

proudest moment?

Unknown:

Oh, my gosh, you just got to spring that question. Yeah. Let

Unknown:

me just throw it out there. My proudest moment? Mmm hmm.

Unknown:

My proudest moment is also kind of tied up with kind of one of

Unknown:

my most shameful moment moments. And it's gonna get kind of deep,

Unknown:

are we? Are we good? Yeah, that's

Unknown:

fine. Actually, my second question was, What's your

Unknown:

biggest regret? So maybe this is one answer to both those

Unknown:

questions.

Unknown:

We'll see. Yeah. Um, so when I was dealing, when I, like I

Unknown:

said, when I was going through it, it was just myself and I was

Unknown:

going to the hospital, and it was triggering all that trauma

Unknown:

I, during that period, my husband went on a deployment, or

Unknown:

I had I had, I had a health challenge. And what that landed

Unknown:

me was surgery in the hospital. And then, soon after that, my

Unknown:

husband went on deployment, so I was alone. And I had been

Unknown:

through this medical thing that had triggered like everything.

Unknown:

So everything was bubbling up to the surface. And I, I had a

Unknown:

complete mental breakdown. And I was like, my body shut down. I

Unknown:

couldn't do anything like, my body was like in, you know,

Unknown:

you're gonna deal with all the stuff that you have ignored for

Unknown:

all of these years. 10 years later, it's and that's actually

Unknown:

a common experience for survivors. That brown that seven

Unknown:

to 10 year point, there's often a resurgence, like a reemergence

Unknown:

of this past trauma that says like, Okay, now you get to deal

Unknown:

with me remember me? Yeah. Right. And so I found a really

Unknown:

good psychologist. And we were going through all the things,

Unknown:

and God really speaks to me and metaphor and in through images,

Unknown:

and little visions and things. And at one point, in the

Unknown:

therapy, we were kind of started trying to get to the root of

Unknown:

things, because it's not when you're dealing with trauma. It's

Unknown:

not just like the big tree trauma. It's also like little T

Unknown:

trauma in like, childhood stuff, like all the things like it's

Unknown:

all connected, right? And I am, this image that I had in my head

Unknown:

was I was this little girl in a shack in the woods that I the

Unknown:

shack that I kind of built myself in Lean tos. And it's

Unknown:

where all the things about myself that I felt were most

Unknown:

shameful, and unacceptable. That's where I put all those

Unknown:

things. And in my, in my vision, um, Jesus came and knocked on

Unknown:

the door, and asked to come in. And that was one of the most

Unknown:

like that sense of shame and fear. He was like, right on it.

Unknown:

And I think my proudest moment was when I said, Yes, you can

Unknown:

come in. And he just came in and sat with me. Looked around. We

Unknown:

dealt with all the things in the room, and then he led me out and

Unknown:

took me to his mansion, to my new room that he had built for

Unknown:

me. And I think I, I say that's my proudest moment, because I

Unknown:

think our proudest moments come when we say yes to doing

Unknown:

something hard. And that was probably one of my harder

Unknown:

moments. And I'm grateful I said, Yes.

Unknown:

So going back to the other question, any big regret

Unknown:

something a bit or something that you'd like to have a do

Unknown:

over?

Unknown:

Oh, okay. This is also emotional. I know exactly what

Unknown:

this one is. Because it it is kind of an undercurrent In my

Unknown:

life and continues to influence my decisions and how I interact

Unknown:

in relationships today. But when I was going through treatments,

Unknown:

I made a really good friend, who was also a survivor and name was

Unknown:

Brittany. And we connected. Like we, you know, this intense

Unknown:

shared experience that we had was a real bonding experience.

Unknown:

And we were part of a group together that with an

Unknown:

organization that brought teens and young adults with cancer

Unknown:

together to do arts, and we would share stories that way

Unknown:

through to with each other, and we were really close and her

Unknown:

cancer came back. And it was her second recurrence. And I was

Unknown:

really busy with school and starting college and like all

Unknown:

the things going on in my life, and I would see her

Unknown:

occasionally, but she was also kind of really private when she

Unknown:

wasn't feeling well. And one day, her and her dad called me

Unknown:

and she I knew she had been admitted to the hospital. And he

Unknown:

said, You should come, you should come now. And so my mom

Unknown:

and I got in a car and we drove to Lucile Packard Children's

Unknown:

Hospital. And um

Unknown:

I showed up on the floor. Now, of course, Brittany. And she had

Unknown:

died 15 minutes before I got there.

Unknown:

And this idea that we should never wait to show up for people

Unknown:

that we love and tell them how much we love them.

Unknown:

Because we never have tomorrow promised. And that gets

Unknown:

reinforced every day in the hospital. We may work with a

Unknown:

patient and expect to, oh, tomorrow I'll bring you that

Unknown:

thing or do that thing or whatever. And then the next day

Unknown:

they're gone. Or they're not feeling well or like things can

Unknown:

change so quickly. And we don't have as much control as we think

Unknown:

we don't know as much as we think. So that biggest regret

Unknown:

has definitely fueled a lot of how I live my life now. Well,

Unknown:

we're trying to I'm not perfect.

Unknown:

So one more question. Hopefully I won't make you cry with this

Unknown:

one. Who inspires you?

Unknown:

Oh, gosh, so many people. So many people inspire me

Unknown:

ah

Unknown:

I, I joke that it takes you know, I I'm kind of in front of

Unknown:

my organization, and I'm out talking about it and face and

Unknown:

all the things but what people don't see is there's like,

Unknown:

dozens of people behind me hoping to prop me up and like,

Unknown:

listen to me when I'm crying and things. It takes a lot to keep

Unknown:

me going. Um, and I cache. I'm inspired by my husband. He is

Unknown:

how do I describe it? He is the most emotionally intelligent

Unknown:

person I think I've ever met. But when you meet him, he's kind

Unknown:

of just like this goofy, silly guy and that everyone kind of

Unknown:

connects with and likes and you wouldn't necessarily know that

Unknown:

there is that depth there. Once you really get to know him. But

Unknown:

there's this also sense of self sacrifice and service that he he

Unknown:

commits to every day for the people that he loves. And he

Unknown:

shows up when people are dealing with hard things he put he picks

Unknown:

up the slack when when I'm busy and can't He takes care of our

Unknown:

son and he he inspires me every day his love for me and for his

Unknown:

family. It inspires me every day and it's it's really the

Unknown:

foundation nothing that hurts my heart would not exist without

Unknown:

without my husband's love for me.

Unknown:

That's great. So to close it out here. Can you tell my listeners

Unknown:

or give them some insight into ways they can help their you

Unknown:

know where can they go? Learn More, what can they do to help?

Unknown:

Sure. So a great place to start is to go to our website

Unknown:

heartsine art.org. We're based in San Antonio, but we're now

Unknown:

serving people all over the country, particularly healthcare

Unknown:

staff right now. And burnout is super high. We're almost two

Unknown:

years into the pandemic. And there is a severe health care

Unknown:

worker shortage, that is really kind of the our next healthcare

Unknown:

crisis and they need our support. We have a program

Unknown:

called our gratitude Graham's program where healthcare workers

Unknown:

can enroll in our websites. And they get regular emails from our

Unknown:

artists, musicians, writers, with a little song or inspiring

Unknown:

quotes or props, or like little art prompts that they can do

Unknown:

with like a pen and paper. But we can we pair those with

Unknown:

messages a thanks and gratitude from people in the community. So

Unknown:

you can actually go to our website and write a letter to

Unknown:

healthcare worker, and we'll pass that along. And that's a

Unknown:

way that you can tangibly get involved. But then also, if you

Unknown:

have the financial means to support that we one of our core,

Unknown:

a core part of our mission is providing meaningful work

Unknown:

opportunities for artists, which artists have been, like their

Unknown:

whole, all their economic opportunities, were completely

Unknown:

blown up over the during the pandemic, and we were the only

Unknown:

paycheck for many of them for a significant period of time. And

Unknown:

the only way we're able to do that is because of people that,

Unknown:

that support us financially and support us each month, you can

Unknown:

actually support, you can go through our artists and actually

Unknown:

pick one to support and you get mess, you get stories, each

Unknown:

month of impact that they've made in the hospital because of

Unknown:

your support. So if you like feeling connected to this kind

Unknown:

of work, those are two ways that you can do it. And but then also

Unknown:

just very practically in your own life. challenge that I would

Unknown:

give you is that we give a challenge that we give to our

Unknown:

artists is learn to hold space for yourself in your own pain,

Unknown:

so that you can more effectively hold space for others in their

Unknown:

pain without judgment and without trying to change them.

Unknown:

Because I think if more of us were able to do that we would

Unknown:

have a much more loving and compassionate world.

Unknown:

Thank you so much. I appreciate Oh,

Unknown:

in our podcast, oh my God. Oh, yeah. All right. Go for it, my

Unknown:

staff would be really mad. So are you don't

Unknown:

mention your podcast on a podcast that's like, it's

Unknown:

obvious.

Unknown:

If you're interested in like learning how the arts benefit

Unknown:

our health and stories of people who have used it to transform

Unknown:

their lives, research, Doc, researchers, doctors, amazing

Unknown:

stories. You can check out our podcast arts for the health of

Unknown:

it. We're on all the platforms. But we I think it's very

Unknown:

entertaining and educational. So and that's what we're told it is

Unknown:

to so it's not just me, but arts or the health of it, you can

Unknown:

check out our podcast.

Unknown:

Great, thank you. I'm glad you remembered that piece of what I

Unknown:

did to prove what a bad host I am for my co host would be

Unknown:

really mad at me. Well in a bad host at this and for not

Unknown:

prompting you for it either. So we'll we'll we'll equally share

Unknown:

the blame. So thank you so much for for joining me really

Unknown:

appreciate it. Wonderful to meet you. I'm so impressed and

Unknown:

inspired by what it is that you're doing to help people and

Unknown:

keep it up.

Unknown:

Thank you. Thanks. Honored to be here. Thank you

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About the Podcast

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The Narrativ
A podcast about storytelling, and the stories behind the storytellers.

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About your host

Profile picture for Geoff Galat

Geoff Galat

Geoff has spent his entire career leading go-to-market for major enterprises such as Mercury Interactive, Luminate, Tumbleweed, Tealeaf, IBM, AGT and Clicktale as they transform or adapt to new market trends and opportunities.

In addition to many speaking engagements, Geoff is expert in public and analyst relations, and has been a frequent interview subject on marketing and customer experience topics. Geoff has been a frequent author on customer experience, marketing and business topics, holding ongoing columns at Digital Doughnut and Econsultancy and contributing to Forbes.