Disclaimer: This is transcribed using AI. Expect (funny) errors.
Mindy Peterson: [00:00:00] I’m Mindy Peterson and this is Enhance Life With Music, where we explore the ways music can make our lives better and spotlight the resources you can use to enhance your life with music. We’re talking today about how music is being used to get the most out of a life living with cystic fibrosis, also known as CF. Ashley Ballou-Bonnema is a professional vocalist, teacher and writer whose own experience with singing and CF was transformational. Ashley founded the nonprofit organization Breathe Bravely to help others combat the effects of CF and progressive lung disease through the science, art, and practice of singing. Ashley joins me today from Sioux Falls, South Dakota, my neighboring state to the west. Welcome to Enhance Life with Music, Ashley.
Ashley Ballou-Bonnema: [00:00:48] Thank you so much. It’s so wonderful to be here.
Mindy Peterson: [00:00:51] So wonderful to meet you and connect with a fellow Midwestern gal. As you know, Ashley, I found out about your work in a recent Sound Health Network e-newsletter. Shout out to Sound Health network. For listeners who aren’t familiar, they promote research on music’s impact on health and wellness. I’ll put a link in the show notes, and I highly recommend that listeners follow their socials and their newsletter. Their article about your work pointed out that music for you isn’t just an art form. It’s literally your lifeline. You’re a classically trained opera singer living with cystic fibrosis, and your singing has proven to be not just a path for healing for you, but also a vital health indicator. So I’m really looking forward to hearing more about that. But starting out for for those of us who may not be really familiar with cystic fibrosis, just tell us a little bit about what it is.
Ashley Ballou-Bonnema: [00:01:44] Yeah, sure. Cystic fibrosis is a genetic disease that is multi-organ systems that it affects. Namely, most people think of CF as a respiratory disease, which is true. But there are also, you know, Cftr proteins throughout our entire body that body that are affected. But namely, when people think of CF, they think of either a digestive system, disease and or a respiratory disease because the body produces a thick, sticky mucus due to the mutations of CF, which in our lungs is hard to clear, which creates respiratory issues infections, damage, scarring leading to respiratory failure. So it is a is it a progressive fatal disease.
Mindy Peterson: [00:02:25] Okay. And from what I understand, when you were born, you were not expected to live to the age of 20, but you’ve lived far beyond that. And medical advanced medical care is advanced enough that over half of today’s population who’s living with CF is over 18 years of age. Is that right?
Ashley Ballou-Bonnema: [00:02:45] Yes. That’s correct. It’s about 60% now are above 18 years old. So like you said, when I was born, I wasn’t expected to live past the age of 20, which I just celebrated my 38th birthday, which is pretty incredible.
Mindy Peterson: [00:02:58] So wonderful.
Ashley Ballou-Bonnema: [00:02:59] And thanks to, you know, continued progress in the medical field of therapies and medications. That life expectancy continues to go up and up and up.
Mindy Peterson: [00:03:10] We are grateful for our scientists at Sound Health Network and beyond for sure. Well, tell us just a little bit about your story. I know for a long time you were very adamant that nobody know that you were living with CF. This was, I think, during college or as late as college. What took you from that point of not wanting anyone to know that you had CF to starting a nonprofit organization, helping others with CF transform their health and well-being through music?
Ashley Ballou-Bonnema: [00:03:38] Yeah. So I had an older brother with cystic fibrosis as well, who was seven years older than I was. And, you know, I watched his journey with CF as a child growing up. He was diagnosed late at the age of seven, and so he did not have an early intervention the same way that I did. And his disease itself was more severe. So watching him grow up battling this disease that just caused such despair within our family, um, really wreaked havoc on the marriage of my parents. Um, you know, their emotions, the how this disease truly impacted not just the person with CF, but this ripple of people around him. Um, you know, I saw how devastating this disease could be to my parents and to the people that loved him. And so I didn’t want to be the cause of that pain. Uh, so a lot of times I would downplay it. I would pretend it didn’t exist. I was grateful because after he was diagnosed when I was born, they just tested me right away. So I had that early intervention right from the beginning of life, which set me up for for greater success. Um, but with that said, I could also kind of moonlight that I didn’t really have a disease. And cystic fibrosis is known as an invisible illness. So if you were to see me on the street, you wouldn’t be thinking, oh, wow, this girl has a has a genetic disease or has a lung problem or cystic fibrosis specifically.
Ashley Ballou-Bonnema: [00:05:07] So I could get by with having this kind of, quote, normal life. And also, you know, not wanting to be the cause of more pain for my family. Um, so wanting to downplay it, wanting to just kind of hide it. Um, so that was kind of one aspect of why I, I kept CF kind of close to close to my heart. Secondly, as a musician, um, nobody’s going to hire a singer who can’t breathe. So I going to college, um, wanted to be measured by the same standards as my peers, not necessarily as somebody who’s like, oh, wow, you sang that that piece really well for someone with CF. Sure. So I, I was adamant that I wanted to be measured by the same standards and know as for myself as well, that I was capable of doing it. Um, the difficult part of all of that is, like I said, CF is a progressive disease and CF doesn’t care what you have planned for yourself. And so there were, you know, complications that continued to arise while I was in college but got through most of college without, you know, the masses of my peers knowing there were a few professors that knew because they had to know.
Ashley Ballou-Bonnema: [00:06:20] But going to grad school is when things really, really became apparent that I wasn’t able to hide it any longer. Um, you know, during this time, as well as things were progressing, I was having severe bouts of hemoptysis, which is coughing up blood. And so having increased episodes that were deadly as well as the need for antibiotics constantly. So I would be hooked up to home IVs. Um, I would go to college and stick them in my clothes and hide them so that my peers couldn’t see or know that this was happening. But, you know, it was so excited to go to go to grad school and continue my my education, not necessarily knowing what I wanted to do, but I know that I needed to do it. And, you know, looking back, you know, it’s always hindsight. Is 2020 right? You’re able to look back and realize that you were on this path because it was it was my source of life, truly, that if I wasn’t singing, what was I doing? What was I what was happening to my body? You know, the the very act of singing in and of itself and studying and pursuing, you know, reminded me that I was alive, that I was living and I was breathing and I was winning this battle against cancer. So I got to, you know, grad school and, you know, during this time with more hospitalizations and more complications, I had some wonderful friends that were around me saying, you know, like, we know what’s going on.
Ashley Ballou-Bonnema: [00:07:48] Let us in. And, you know, I was trying to protect everybody from the realities and the devastation that CF can cause. And so during grad school, again having complications that arise where it made it really impossible for me to to hide it any longer. Um, I remember, you know, one of the kind of key moments in my, in my experience of grad school is doing my first jury, uh, for my first semester and, you know, going up singing my pieces, thinking, that’s right, I did it. Like, I am. So I’m stronger than CF. Cf will never be able to take me down. Right? And I remember walking off the stage and feeling this kind of gurgle or bubble in my chest, and I knew exactly what it was. And I went to the bathroom and I had a severe hemoptysis episode and thinking, you know, I just got done performing this Brahms piece that I loved and, you know, several other pieces that I had got to perform for the for the faculty and thinking how hard I have worked and how strong I felt to this devastating reminder that CF was still in charge and CF was still going to undermine everything that I loved.
Ashley Ballou-Bonnema: [00:09:05] So later that year, again from friends and family saying, you know, let us in. I started a blog on April 1st of 2014 that just was kind of me coming out to the world that I had cystic fibrosis, and this is really what it means in my life. This is how it impacts me emotionally, mentally, physically. This is how it impacts my relationships. This is how it impacts my ideas and my wishes for the future. And so it was at that point that I really allowed the world to see me as me. And, you know, it’s crazy to look back on it now that after sharing all of that, I would have one of the most severe and serious complications of that following year with my cystic fibrosis. Thinking that I would need a double lung transplant, or that I might not survive to the near future. And luckily, that is not where my path took me. But that blog that I had started writing allowed the world to be ready for that part of my life. And I should say, allowed me to be ready to share that part of my life. So I got to my last semester of graduate school, and I had no voice from all of this, these respiratory complications. And, you know, in order for me to get my degree, I had to give a degree recital at the end of, of that semester.
Ashley Ballou-Bonnema: [00:10:36] And it was going from 25% lung function to 50% lung function within those six months that I, I truly believe that it was singing that saved my life. And so when I got to that recital, you know, when you take that final bow. I knew it wasn’t just about me performing this. This recital of this music that I loved, but it was so much more than that that I knew that singing had saved my life. And everybody that was present that day as well also realized what singing had done in defiance to a disease that was vying to steal every breath. And so it was at that point I realized Ashley is the musician, and Ashley, as the person with CF, didn’t have to live parallel lives. And so it was where those two, that passion, that and my truth intersected became my purpose. And that’s when I realized, you know, I truly believe that singing has has enhanced my life, has given me more. Life has extended my life. What happens if I could work with other individuals living with cystic fibrosis? So they too, might know the life giving impact that singing can have on their own life. So from there, um. Breathe bravely was born the nonprofit.
Mindy Peterson: [00:11:58] Wow. That is such a powerful story. And I had so many thoughts as you were sharing that. One of them was, we never know what is going on behind the curtain of people’s lives. When we see the outside of them, we make assumptions that everything is fine and we don’t know the the challenges that they’re, that they’re living with. I mean, just hearing the fact that you are attending college classes, having an ivy hidden under your clothing, like, wow, you are a badass woman. You know, like, I mean, I really love what you said, too, about how you came to that point of realizing it wasn’t Ashley with CF, and it wasn’t Ashley as a musician, as two separate entities. It was where those points intersected that you really found purpose. And it just reminds me of the fact that sometimes the things in life, the situations, the circumstances, the events that we see as such a devastating event can have this silver lining. Where for you, it was this awful episode that your disease brought on, but there was this silver lining of really bringing about your your purpose and some of your life’s, your life’s work. It could probably be said so. Really? Yeah.
Ashley Ballou-Bonnema: [00:13:44] You know, a lot of when I started writing as well, you know, to kind of air my my life to everyone and share it with them. It the sole purpose of it was not to be like, this is happening to me. This is, you know, all of these things that that happen in CF. This is what it creates. These are the feelings that it manifests that I wanted every single writing that people were to read to be a connection point, because what I experience as an obstacle in my life is going to be different than somebody else’s obstacle in their life. But the beauty of connection and empathy is that those feelings are the same. We all feel pain. We all feel heartache. We all feel excitement and elation. We just call. We just call them different things. And so instead of it, you know, CF being this thing that makes it makes me an outlier. Instead, it’s my experiences that make it so that I am able to understand and be understood.
Mindy Peterson: [00:14:46] Yes. You have a really great graphic on your website that shows all the the areas of the body that CF can affect. And you point out that CF can also affect the mind. Singing has proven mental, emotional and physical benefits. Tell us how singing can be used to help manage and heal from cystic fibrosis.
Ashley Ballou-Bonnema: [00:15:09] Yeah, so that is the one key component about singing that I love so much. And especially how it impacts someone with CF is that mental, emotional and physical aspects of of the power of music. And first of all, you know, I talked about how CF creates this thick, sticky mucus in the lungs and creates scarring and respiratory issues and infections. And we as people with cystic fibrosis have to do airway clearance several times a day to get that mucus up and moving so that it doesn’t become compacted. And an area a breeding ground for infection. And so we put on what kind of looks like a life jacket. Um, and it has hoses that connect to it, and it fills with air and it actually vibrates from the outside in to help loosen and move that mucus. And the beautiful thing about singing is that it’s vibratory. And within the chest and the lungs, we’re moving that air, but it’s intrinsic vibration instead of external vibration. So I always say we’re getting the best of both worlds, right? Where we have all of these wonderful medical advancements that help us move that, that mucus. But we ourselves have the greatest instrument of all that can move it intrinsically to help.
Mindy Peterson: [00:16:27] So can you use singing in place of that other process, or is it just sort of a supplement to it, or does it depend on the person and really whatever stage they’re in at the moment?
Ashley Ballou-Bonnema: [00:16:37] Yeah, it really depends on the person. You know, for me personally, I do a therapy vest treatment in the first thing in the morning and then because I’m teaching or singing all day. I use that really as my second airway clearance. And then at night, I’ll do another therapy vest. So I use it as an addition to, um, you know, and a lot of the singers that we’re working with, you know, we’re showing them how they can be singing while they’re doing their vest. So you’re getting maximum potential for all of that vibration and that airway clearance and that movement. So the physicality of that alone, um, are really powerful as a person with CF dealing with lung disease and, you know, it does. It always feels like an oxymoron when I talk about this, where you’re talking about singing, you’re talking about breathing with people who have lung disease. Um, it just feels like a misnomer, right? And in all actuality, it is one of the most powerful enhancing therapies that that somebody can do. Um, so that side of the physicality, um, you know, and its benefits also just respiratory strength. Uh, we do a lot of coughing.
Ashley Ballou-Bonnema: [00:17:46] We do a lot of, you know, deep breathing, trying to get that air into the bottom lobes of our lungs. And so we’re constantly working on diaphragmatic strength, respiratory strength, you know, intercostal strength as a person with CF, when we go into doctor’s appointments, we do pulmonary function tests that give off, you know, some indication of how our lungs are doing. And so that’s all based on how strong your respiratory system is, how well you can take that deep methodical breath and how forceful you can exhale. And so singing you know, the very basis of singing is that breath work. And that aligns just so perfectly with the health and well-being of someone’s lung systems. With cystic fibrosis. Sure. You know, and then we talk about breath management and breath control. As CF becomes more and more progressive and people are dealing with infections, loss of lung function. You know, people can feel that they lose control of their own breath. And so what we like to do is give, to allow people to feel that they are in control of their breath, and their breath is not in control of them.
Mindy Peterson: [00:19:01] That sounds like something that would have really significant positive mental effects to just mentally knowing that I’m in control of my breath, rather than feeling like CF is in control of it, seems like it would really have a big impact.
Ashley Ballou-Bonnema: [00:19:16] Yeah, and I think that is the the most powerful thing when it comes to working with a singer with CF is when talking to them, you know, you feel like I can’t, I can either sing or I can’t sing, right? It’s one of those on off switches, and it all has to do with the physicality. But I can tell you every single, every single day that I’m teaching, I am talking to my students and saying, you know, singing is 90% mental. It is all it’s all in the brain and how you’re approaching That sound, that physicality of things. And once people understand that, they really have that control, there’s this freedom that is released within them and within their own voice, rather than them feeling constricted and suffocated almost by their own inabilities or the physicalities of what CF is doing.
Mindy Peterson: [00:20:07] Sure, that also sounds like it would have huge impacts for just anxiety to really mitigating that and instilling a confidence instead.
Ashley Ballou-Bonnema: [00:20:16] Yeah. You know, and so when it goes to, you know, the talking about the physicality of, of singing and the mental and the emotional, you know, talking about maximum breath potential is what really what we’re trying to get at. Because with every percent loss, you know, that also has a mental implication to us as well. Like, oh my gosh, my disease is progressing. Oh my gosh. This anxiety this this worry that overcomes us. Well, if we can know that we are maximizing every single breath that we are taking, it feels less like we are being consumed by a disease and more that we have the tools to fight it.
Mindy Peterson: [00:20:56] Yeah. So self efficacy.
Ashley Ballou-Bonnema: [00:20:58] Yeah. Yeah. So then you know, that’s the physicalities of that, the physical aspects of singing where like you were talking about the mental and the emotional, you know, just the, the ability to reduce anxiety, to reduce perceived pain, to even think that we are breathing better, how that changes the mental side and our relationship with a disease that we have no control over.
Mindy Peterson: [00:21:21] Sure. Stress reduction kind of falls into that same category. I imagine one thing that I noticed on your website is you talk about how singing has been not only a path to healing and some of the ways that you just described, but you’ve also found it’s really helpful for managing CF as a health indicator. Dictator. Tell us a little bit how singing really allows you to be in tune with what’s going on your with your body, and just be being really aware of when maybe there’s an infection that you’re fighting or there’s complications or things are going really well. Tell us how singing affects that ability to sort of monitor what’s happening.
Ashley Ballou-Bonnema: [00:22:00] Yeah. And I think, you know, my college years specifically, this is really where I started to understand just how vital singing was in my own life, and not only as just a human being living with a lung disease, but as a singer specifically. Uh, you know, I would sing a piece one day and say, oh, I can I can sing these three measures with no problem. And I would go in to the practice room the next day, and I would only be able to sing two measures and I would think, oh my gosh, okay, what’s going on with my lungs? I can feel something is different. And it would be, you know, a gauge for me to see the health and wellness of my lungs. So I would call my, my care team and say, oh my gosh, I can only sing two measures today. They probably thought I was absolutely insane. I could sing three measures yesterday and I can only sing two today. Something is going on. But it was, you know, after many, many experiences of this that my care team started to really trust me and trust and understand that I knew my body so well and that we were able to catch and kind of intervene at an earlier time than letting things just kind of like blow up and have to fight things ten times harder from behind. So that really makes sense. Yeah, that’s one way I wanted to help other individuals with CF is for them to have that control and understanding and just the knowledge of their own body, so that, like you said, you could be completely in tune with the health and wellbeing of your respiratory system.
Mindy Peterson: [00:23:33] Tell us a little bit about your non-profit organization, Breathe Bravely. You started it with the goal of helping others with CF discover and implement the transformative connection that you found between music and wellness and all it’s done for you. Tell us more about the organization and the resources that it offers.
Ashley Ballou-Bonnema: [00:23:52] Yeah, so we started Breathe Bravely in 2015 and it was.
Mindy Peterson: [00:23:57] Coming up on ten years here.
Ashley Ballou-Bonnema: [00:23:58] I know it’s crazy. I cannot I cannot believe that it’s been ten years and all that has been accomplished. And the gift that really we, we have seen and understood to be this organization and its potential. So the organization, its mission is dedicated to giving voice to cystic fibrosis. And it was my hope when we started this that we could pair individuals with cystic fibrosis with professional voice instructors for private voice lessons. Being an instructor myself and a musician, I have a plethora of incredible, incredible musician friends and colleagues that I trust wholeheartedly with the philosophy of teaching. So there were two specific individuals that I was very close to as musician friends and also as colleagues that I came to and said, hey, I have this idea for a nonprofit. I would really love to pair people with CF with you for, let’s say, a ten week program of private voice instruction. And I’m not sure if you understand this or our listeners know this as well, but two people with cystic fibrosis are recommended not to share the same space.
Mindy Peterson: [00:25:13] I didn’t know that until I was looking through your website information.
Ashley Ballou-Bonnema: [00:25:17] Yeah. So it can be a very isolating disease because, you know, you think of of support systems and you think, okay, let’s all go out for coffee, let’s all get together. And, you know, there’s nobody that understands better than a person who is experiencing it themselves.
Mindy Peterson: [00:25:33] So when Covid happened and everybody was isolating, those of you with CF were like, yeah, now you know what it’s like.
Ashley Ballou-Bonnema: [00:25:41] Yes, exactly. And you know Covid. Thank goodness it is over. But it was a really great learning experience for other people to understand what it’s like to be a person with CF. And, you know, we if we are in the same space outside, we have the six foot rule. So we have to maintain a distance.
Mindy Peterson: [00:25:58] Sounds familiar. Exactly. Thank you Covid. So, you know.
Ashley Ballou-Bonnema: [00:26:03] We have learned as a community how to connect outside of being able to be face to face in person. And so, you know, thank goodness for zoom. Thank goodness for, you know, just the online community and presence because that’s the only way that we can really, truly connect.
Mindy Peterson: [00:26:21] So you were very fluent in connecting on FaceTime and zoom well before 2020 happened to everybody.
Ashley Ballou-Bonnema: [00:26:27] And you know, at first we being, you know, teachers and being students ourselves at several points in our life where when you think of music lessons and you think of think of voice lessons, you don’t think, let’s do them online. Right. And this was circa 2017. So this was way before the world went really online. Yeah. And you know, so I went to my friends and said, you have to be my mouthpiece. Because I can’t work with these people in person. So I’m going to have to tell you. What it feels like to have CF and sing with CF and, you know, certain exercises that I do in vocalizes and approaches and how it benefits a person with respiratory disease so that you can implement it with these people. And so after a lot of discussion and a lot of ideas, um, we decided to move the program online because that would allow us to better connect with individuals from across the globe. So cystic fibrosis affects about 90,000 people worldwide and about 70,000 people in the United States.
Mindy Peterson: [00:27:38] Wow. So a big percentage of those are in the US.
Mindy Peterson: [00:27:41] Yeah. Yep. Exactly.
Mindy Peterson: [00:27:42] Is that just because we have better diagnosis techniques than people in other parts of the world? Maybe have it and aren’t being diagnosed? Yes. Or is there another reason?
Ashley Ballou-Bonnema: [00:27:51] Yes. That as well. And also one of the most prominent genetic mutations is from northern European descent. And so the United States has a large population of northern European. Yeah. So specifically, you know, that caters to to greater numbers in the United States.
Mindy Peterson: [00:28:11] Sure.
Ashley Ballou-Bonnema: [00:28:12] Um, so we decided to move the programming online. So that way it would a protect the individual that we were working with from, you know, encountering germs and getting sick and having to leave their homes, um, to allowing our teachers to teach from anywhere to anyone that had Wi-Fi capability.
Mindy Peterson: [00:28:35] Aha.
Ashley Ballou-Bonnema: [00:28:35] So we started in 2017 with just five. Five singers, five students living with CF from the ages of 12 all the way up to 60 years old. And we are now starting February 1st, our 25th session of singing. And in that time, we’ve taught over 7000 lessons to individuals living with cystic fibrosis.
Mindy Peterson: [00:28:59] Wow. And I want to clarify. You have the sINgSPIRE virtual lessons, and then you also have of sINgSPIRE. And I love how you spell this where you capitalize just the letters in that word. sINgSPIRE. That spell the word inspire. Do I have that right?
Mindy Peterson: [00:29:16] That is perfect. Yes, I love that. I love that you caught that. Yeah. So you also.
Mindy Peterson: [00:29:20] Have the sINgSPIRE virtual choir. So tell us about those two programs.
Ashley Ballou-Bonnema: [00:29:25] Yeah. So the inspire lesson program is the is the original. That’s what we started in 2017. You know, we have three sessions every single year. And we now cap our intake at 40 students per session. And currently there are four of us teaching, you know. So it was really great when we went online with this programming, because that allowed me to also work and teach students with cystic fibrosis, where if it were in person, that wouldn’t be a possibility for me. So virtual lesson program, that is its own entity. And then we have the virtual choir. So you know, a lot of the the teachers that I have the great privilege to work with, I met them by doing ensemble singing with them. And for anybody who has ever sung in an ensemble or a choir, you know that there is just this untouchable bond that is created with the people that stand next to you, that you you take that breath together and you make that music together. There is just something so unworldly that is untouchable. And so we had all of these singers living with cystic fibrosis that never would have the chance to get together in person to experience that. Sure. And, you know, talking as well about how isolating this disease can be and lonely because you’re not interacting with people like yourself. You don’t have that support system. I wondered if we could create an ensemble virtually, that they might experience that level of community and that connection. And so modeled after Eric Whitacre’s virtual choir.
Mindy Peterson: [00:31:06] Which became, I think it became popular during Covid. That was the first I heard of it. Is that when he first started it?
Ashley Ballou-Bonnema: [00:31:12] No, he had actually done it to, oh, several, several years prior. Um, so in the I’m not sure on the date exactly, but I know it was 2000, 14, 13 ish.
Mindy Peterson: [00:31:26] Um, okay. So. Well, he called your group out as, like, one of his favorite virtual choirs I saw, which is pretty amazing.
Ashley Ballou-Bonnema: [00:31:34] Which is really amazing.
Mindy Peterson: [00:31:35] Yes. Yeah. I mean, so he’s a Grammy Award winning composer musician. He his virtual choir during Covid just went viral. So that’s awesome.
Ashley Ballou-Bonnema: [00:31:44] So I modeled it after that and was like, we don’t really know what we’re doing. We’re kind of stumbling through this. And I guess we’ll just figure it out as we go. And it truly is one of the most rewarding and just magical experiences for these singers to come together virtually as one voice, you know? Never would it be possible for us to go to a performing hall and get together and stand next to each other, but that doesn’t mean that we can’t make incredible music together as one voice.
Mindy Peterson: [00:32:17] Right. I can only imagine how powerful and empowering that would be for the participants, because anyone who has gone through something traumatic or challenging has an immediate bond with one Another. And then, like you said, anyone who sings in a choir or plays in a symphony together, you get that entrainment going and you just have this bonding that happens. So to combine those would just be an exponential experience. I imagine that would be incredibly, like I said, powerful and empowering.
Ashley Ballou-Bonnema: [00:32:49] I’m always reminded as well during these we do a rehearsal process and, you know, come together for several months before they have to submit their recordings and such. But inevitably, the very first rehearsal that we do, I’ll get messages from singers that say, I’ve never met anybody else with CF.
Mindy Peterson: [00:33:12] Oh, wow.
Ashley Ballou-Bonnema: [00:33:13] And, you know, these are coming from people who are 50 some years old. And just how powerful that is, that when you see somebody across a screen, it isn’t that you have to explain yourself. And very what I love most as well is when we’re having these conversations and we’re, you know, doing icebreakers and getting to know each know each other and just having conversation like you would before you start a rehearsal that you don’t. We very rarely talk about CF it’s just one of those things that’s understood by everyone. And if somebody does talk about, you know, their life with CF or something that they’re experiencing, there’s this level of comfort and recognition and also radical acceptance that you just can be you wholeheartedly and you don’t have to try and explain yourself. And I think that allows people to really use and find their voice in a different way.
Mindy Peterson: [00:34:08] Oh I bet. Wow. The closest thing I can think of comparing that to personally is I have three siblings. We all live in different parts of the country, and when I get together with them, which isn’t all that often, there is this connection and bond like we grew up in the same household and we have known each other our entire lives. You know, it’s just this unspoken. You just know each other, you know?
Ashley Ballou-Bonnema: [00:34:38] And I think what is really beautiful as well: after our rehearsals, you know, come to a close and our project is done, is that there are these friendships and this, these connections that are made and outside of that. And I think that is the true catalyst of why we make music is to connect.
Mindy Peterson: [00:35:00] Wow. That’s really that’s really beautiful. Just knowing I’m not alone in this has got to be incredibly moving for, for people I can imagine, you know.
Ashley Ballou-Bonnema: [00:35:11] And in the, in the world of virtual music making, right, we can’t hear each other when we sing. And so there is this also empowerment that happens with every single individual singer where they’re thinking, oh my gosh, it’s just me. I just have to send in a recording of my voice. And that is really terrifying for any and all musicians to just be singled out in that way. And at least when you’re in with a live choir in person as well, you know, you can kind of hide and meld yourself to the person next to you. And there’s a strength in that. But in this kind of adaptation of music making, you don’t get to hide. You have to trust that your voice is being built amongst 20 some other people to become something greater than yourself.
Mindy Peterson: [00:36:04] Beautiful. You have so much information on your website. I’ll be sure to include that link, of course, in the show notes. You also have a blog that is is beautiful. There will be the link there. You have a mailing list. You teach obviously voice lessons and have access to other teachers in your network through the the sINgSPIRE virtual lessons. Any other resources that you want people to know about that are available through Breathe Bravely.
Ashley Ballou-Bonnema: [00:36:31] Yeah. You know, I think if people are interested about cystic fibrosis and want to know more about CF as well, you know, there are great websites and resources like the Cystic Fibrosis Foundation, CF org. Um, also the Cystic Fibrosis Research Institute, which is cfr.org. Just, you know, some general information about CF in and of itself.
Mindy Peterson: [00:36:52] And I notice on your website you have the Cystic Fibrosis Community Collective, which is really awesome. It’s a consortium of small but impactful CF non-profit organizations that are all doing amazing things in their own different ways and spaces. So lots of links there where people can connect with those as well. And I’ll point out too, that if people are listening to this and thinking, oh, this, I love what this woman’s doing and want to support it in some way, you do have a space on your website where people can donate as well. So if people are interested in that, that is also an option.
Ashley Ballou-Bonnema: [00:37:26] You know, cystic fibrosis is a very expensive disease to live with. And, you know, we certainly understand and know and realize the life giving impact and priceless impact of music in our lives. And I never want individuals or students to have to decide whether or not they can afford to be a part of this program. So all of our programming is free to individuals. But with that said, that’s how we we, you know, write grants and take donations to ensure that nobody has to make that choice.
Mindy Peterson: [00:38:02] Good to know. That’s wonderful. I’m just going to close out with a quote from your website that I really loved your on your website, you say, with every breath I take, I am grateful. And with every song that is born in my heart, I know that singing has helped save my life. And from that mere truth, sINgSPIRE was born. Built upon a passion and hope. That someone else with CF may know the life giving power of singing. Really beautiful. Well, I ask Ashley all my guests to close out our conversation with a musical ending a coda by sharing a song or story about a moment that music enhanced your life. Is there a song or a story you can share with us today in closing?
Ashley Ballou-Bonnema: [00:38:44] Yeah. You know, having talked about the songs by a virtual choir, I think that is something that I always go back to is one of the most meaningful experiences that I always have and have the opportunity to make music with individuals like myself. Um, but there’s something so magical about taking those individual voices. And when they’re all put together, the incredible, magnificent masterpiece that is created out of building all of those voices together. And as, like I say to all of the singers who contribute to the virtual choir, you know, if one of those voices is missing, that masterpiece is not complete and that masterpiece would not be the same. And so it takes every individual voice coming together to create something greater than ourselves. We have the great opportunity to have a composer named Jennifer Lucy Cook, who is based in LA, write our last two pieces for us. And the last piece that she did is called there’s a mountain top. And I think it speaks so personally to not only people with CF, but the greater community as well of we see that mountain top, and we think about the mountain top that we want to climb or would climb, and how that impacts and affects how we look down from the peak and how we look out across those vistas. And I think there is nothing greater than standing at the top of that mountain, being able to look out and take that deep breath and be so wholly grateful for the life that we get to live, regardless of the circumstance.
Transcribed by Sonix.ai