The Lullaby Project brings together expectant mothers with professional songwriters to write, record, and perform an original lullaby for their baby. In 2017, Massey Hall and Roy Thomson Hall brought this heartwarming initiative to Toronto, and invited partners to participate, including Dr. Esther Bui, a neurologist who specializes in treating women with epilepsy. Today, we’re exploring whether participating in a project like The Lullaby Project can improve overall mental health for pregnant women who are living with epilepsy.
Featuring: Dr. Esther Bui - Neurologist and epilepsy specialist focusing on women's neurological health; Assistant professor and clinician educator within the Division of Neurology, Department of Medicine at the University of Toronto. Dr. Bui founded Canada's first and only accredited Women's Neurology Fellowship at the University of Toronto. She is currently the co-Director of the Women's Neurology Fellowship Program and the Director of the Epilepsy Fellowship program.
Sharon Ng - Graduate student in neuroepidemiology at the Harvard Chan School of Public Health. She was previously a research assistant for Dr. Esther Bui at UHN, and worked with Dr. Bui to conceptualize the Lullaby Project Study. Sharon is now a collaborator on this study.
Julianne Hazlewood – CBC journalist for more than a dozen years, at newsrooms across Canada. Her true love is longform audio storytelling. Becoming a mother is the latest and most joyous chapter in her life.
The Your Complex Brain production team is Heather Sherman, Jessica Schmidt, Dr. Amy Ma, Kim Perry, Alley Wilson, Sara Yuan, Meagan Anderi, Liz Chapman, and Lorna Gilfedder.
The Krembil Brain Institute, part of University Health Network, in Toronto, is home to one of the world's largest and most comprehensive teams of physicians and scientists uniquely working hand-in-hand to prevent and confront problems of the brain and spine, such as Parkinson's, Alzheimer's, epilepsy, stroke, spinal cord injury, chronic pain, brain cancer or concussion, in their lifetime. Through state-of-the-art patient care and advanced research, we are working relentlessly toward finding new treatments and cures.
Do you want to know more about the Krembil Brain Institute at UHN? Visit us at: uhn.ca/krembil
The Lullaby Project brings together expectant mothers with professional songwriters to write, record, and perform an original lullaby for their baby. In 2017, Massey Hall and Roy Thomson Hall brought this heartwarming initiative to Toronto, and invited partners to participate, including Dr. Esther Bui, a neurologist who specializes in treating women with epilepsy. Today, we’re exploring whether participating in a project like The Lullaby Project can improve overall mental health for pregnant women who are living with epilepsy.
Featuring: Dr. Esther Bui - Neurologist and epilepsy specialist focusing on women's neurological health; Assistant professor and clinician educator within the Division of Neurology, Department of Medicine at the University of Toronto. Dr. Bui founded Canada's first and only accredited Women's Neurology Fellowship at the University of Toronto. She is currently the co-Director of the Women's Neurology Fellowship Program and the Director of the Epilepsy Fellowship program.
Sharon Ng - Graduate student in neuroepidemiology at the Harvard Chan School of Public Health. She was previously a research assistant for Dr. Esther Bui at UHN, and worked with Dr. Bui to conceptualize the Lullaby Project Study. Sharon is now a collaborator on this study.
Julianne Hazlewood – CBC journalist for more than a dozen years, at newsrooms across Canada. Her true love is longform audio storytelling. Becoming a mother is the latest and most joyous chapter in her life.
The Your Complex Brain production team is Heather Sherman, Jessica Schmidt, Dr. Amy Ma, Kim Perry, Alley Wilson, Sara Yuan, Meagan Anderi, Liz Chapman, and Lorna Gilfedder.
The Krembil Brain Institute, part of University Health Network, in Toronto, is home to one of the world's largest and most comprehensive teams of physicians and scientists uniquely working hand-in-hand to prevent and confront problems of the brain and spine, such as Parkinson's, Alzheimer's, epilepsy, stroke, spinal cord injury, chronic pain, brain cancer or concussion, in their lifetime. Through state-of-the-art patient care and advanced research, we are working relentlessly toward finding new treatments and cures.
Do you want to know more about the Krembil Brain Institute at UHN? Visit us at: uhn.ca/krembil
00[Your Complex Brain theme music] There are moments in our lives that are important inflection points, and pregnancy is one of them, and I really saw an opportunity to really harness that power in the epilepsy clinic, and say, "This my time. This is my story to tell." There's nothing more empowering than knowing that you're bringing another human being into this world, so this was a powder keg of opportunity for women who had long struggled and felt unheard.
Heather 00:
32[music continues] This is Your Complex Brain, a podcast all about the brain, the diseases that impact it, and the path to finding cures. I'm your host, Heather Sherman, and I have the great pleasure of working alongside the team at the Krembil Brain Institute in Toronto, Canada, a leader in brain research and patient care. In each episode, we'll take you behind the scenes into our clinics and research labs to meet the game-changers of the future. We'll empower you with the latest research to help you take charge of your own health. You'll also hear from people who are living with brain disease, as well as their loved ones and the care teams who support them. Join us on a journey to unravel the mystery of your complex brain.[theme music continues then fades out]
Julianne Hazelwood 01:
21[bubbly electronic music] My name is Julianne Hazelwood. I am a new mom. My son, Wesley, is 15 months, and in the last year, my life has totally changed in the most beautiful way. My epilepsy journey began when I was about 14 years old, but maybe even a year before that point. Basically, when I would wake up in the morning, I would get up early for choir practice and I would be having these kind of uncontrolled jerks and I thought,"Okay, I'm just tired," but it continued to happen over the span of several months until, finally, I had a tonic clonic seizure where I lost consciousness and had a seizure on my bathroom floor. And, thank goodness my mom woke up in the middle of the night, heard me, called 911, and I was diagnosed with epilepsy.[music continues] After I was first diagnosed with epilepsy, I was reluctant to want to go on medication, I remember, at first. It was a scary— I mean, the diagnosis was a scary thing, and to know that I would have to potentially try different kinds of medications and how I would respond to that, I remember feeling just very overwhelmed and scared by the whole thing. But, I did start a medication and that ended up being the only medication that I was on from the time that I was 15 until the time that I was 36, when I changed medications in the lead up to becoming pregnant.[music continues] I think I knew that I wanted to be a mom for so long, and I also had the feeling that it would happen. It always felt like it was far off, that I felt like, "I need to get my health under control first. I need to be in a better place with my epilepsy," and I also knew that the medication I was on, it was not one that was recommended for women who were of childbearing years, or who could become pregnant. So, I also knew that that was a big change that I would have to make, were I to become pregnant. I knew I would want to at least try to change medications.[music continues] So, the process of actually switching the medications was something that I started when I met Dr Bui. Our first consultation, she said, "We should switch you off this medication." I knew from talking to neurologists, in the past, that seemed to be the consensus among a number of neurologists, but it really wasn't until I was under the care of Dr Bui that I felt supported enough that I felt like I could really take that step.[music continues] I called my partner afterwards and I started to cry because I felt so heard in that first appointment, and that was such a contrast to other neurologists that I had in the past. You know, I had been under the care of some great neurologists as well, but I don't think I had ever had the privilege to work with a neurologist where I felt like I was a partner in my care, that we were going to embark on this next stage together.[music fades out][upbeat electronic music] I remember hearing about The Lullaby Project in one of my appointments with Dr Bui and it was something that, when I became pregnant, I recalled that conversation and the wheels started [chuckles] going into motion in my own mind of,"Oh, my goodness, I wonder if this is something that I could take part in." The Lullaby Project is a program where it connects women with epilepsy who are pregnant—in my case—with songwriters to write a song for our babies to be, and I think there's a really wide scope of what you can put into that song. Maybe it's messages that you want your baby to know about you and the world. In my case, it was a song about my journey up until that point that I wanted to share with my son. And, through the course of several weeks, you meet with the songwriter. I would come to our sessions with poetry that I had written, and we would take those words and make it into a song and melody.[gentle music with soft vocals] And so, my experience was incredibly positive. It was a really satisfying, moving, awe-inspiring process to bring to our sessions poetry, or reflections about what I was going through and then very talented artists that I was working with to be able to kind of transform that into a beautiful song. When I think back to the months that I was pregnant, that was a really foundational experience in helping me, even kind of understand what I was going through. I think just the act of creating the song, it was such a wonderful way to kind of process what was going on for me, to kind of put into words my journey up to that point. It really got me even more excited to meet my son, to get to sing this song to him, and encapsulated so much.[song continues] My song is called The Road to You. It's about my journey [chuckles] up until that point of being pregnant, really. And then, my other aim in the song was just to really pour so much love into it and into Wesley every time I sing it to him, so yeah, it's been such a special thing because I have sung it to him so many times. It's something that I sang to him practically every day.[song continues] Becoming a mom, it has been transformational in a lot of ways, and I also feel so grateful because, in those early months of my son's life, one thing that I don't know if I anticipated would be the case as much as it was is how scared I was because of sleep deprivation. In those early months, with the help of Dr Bui, I was, you know, taking higher doses of medication just to make sure that I had my seizures under control. But, what I was so grateful for was my mom was staying with me a few nights a week to make sure that I was able to get through that period of time safely, as well. And, I reflected on that so much over the last year, just how grateful and how full circle it has been. I'm so grateful to my mom because she saved my life so many times when I had seizures and then, for me to be a mom now and for her to be there by my side in those early months when my son was a newborn, and to make sure that I could be there for him and care for him, she was right by my side, as well.[song ends] A few days after my son was born, we took this photo of my mom holding my son, Wesley, and it was just such a beautiful moment.[gentle electronic music] My mom was smiling and Wesley was just looking up at her, and I thought,"Oh, my gosh," just like the two loves of my life – my mom and my son. I feel so lucky to be surrounded by that love and to have had her support all through my life, and particularly through this journey of becoming a mother. I think, for other women with epilepsy who are hoping to have a family one day, I would just say, "Keep going. It is so possible." I wish I could give them a hug [laughs] because I see them and I feel them. I know how scary it can be on the journey to get to that point. What I'd say to them, "If that is something that you want, just keep going."[music ends]
Heather 09:
57[gentle, upbeat electronic music] A beautiful message and such a sweet lullaby. Thank you to Julianne for sharing your story with us. Today, we are exploring exciting new research, looking at the impact of music as medicine. The Lullaby Project, which started at New York City's Carnegie Hall, brings together expectant mothers with professional songwriters to write, record, and perform an original lullaby for their baby. In 2017, Massey Hall and Roy Thomson Hall brought this heartwarming initiative to Toronto and invited partners to participate, including Dr Esther Bui. She's a neurologist with UHN's Krembil Brain Institute and the founder of Canada's only women's neurology clinic, which is located at UHN. Dr Bui also co-leads the Women's Neurology Fellowship at the University of Toronto and is a highly respected advocate for women's neurology education in Canada. Joining Dr Bui is her collaborator Sharon Ng. She's a graduate student in Neuro-epidemiology with the TH Chan School of Public Health at Harvard. Sharon was previously a research assistant for Dr Bui and worked with her to conceptualize The Lullaby Project study. Thank you both for joining me today.
Dr Esther Bui 11:
20 It's great to be here. Thanks for inviting us.
Sharon Ng 11:
22 Thanks for having us.[music continues then ends]
Heather 11:
28 Well, we just heard from Julianne, who is a patient of yours, Dr Bui. How do you feel when you hear Julianne describe her experience with The Lullaby Project?
Dr Esther Bui 11:
37 I have to say I count my blessings. I think I won the lottery when I met Julianne, cause she's a masterful storyteller and when one storyteller meets another storyteller, big things happen. So, I saw, right away, Julianne's really amazing capacity to tell a story, but also a passion to share this with others, and that's really transformative.
Heather 11:
59 Well, her story is so impactful and particularly how being a part of The Lullaby Project actually impacted her as a person and eventually as a mother. So, tell me about that, in the course of treating Julianne as a patient, but also seeing the evolution that she went through as part of this project.
Dr Esther Bui 12:
13 I think one of the best analogies I have in the work that I do is the concept of a constant gardener. I said this to Sharon the other day, as well, is that when we meet people at different stages in lives, at the beginning of any relationship, you know, we're all seeds to one another and what transpires in this interaction, in the environment that's built in a safe and caring an open environment, is what blossoms out of this. So, I've always viewed my relationship with Julianne as her neurologist as being a constant gardener, because really it's Julianne's story and it's, for me, transformative to see Julianne first arriving as, quite honestly, a very scared human being, someone who had been told all of her life from a very young age, that epilepsy was something that had taken something away from her. And to feel for the first time as a, you know, 30-year-old woman that she's heard by a physician is for me just a very simple but honourable gift to give, and to see her grow and grow with the concept that this is her story to tell, her decision to make, and as a neurologist and her physician, my sole responsibility is to ensure that this is her story.
Heather 13:
48 It's such important work. Sharon, I don't know if you've had a chance to meet Julianne, personally, but I know that you've had a chance to hear many of the lullabies that were created by a lot of the women in the project. So, tell me how you feel when you hear the music.
Sharon Ng 14:
00 It's so nice to be able to get to know these women, not in like a very clinical or research-based setting, but it's nice to know what they like to do, it's nice to know what they think are important in their lives, and I personally have not gone through pregnancy yet, and it's definitely such a transformative experience and it's nice to hear different sides of what pregnancy mean to different women and how they feel about their baby, their loved ones, their community. I have a little bit of a music background, so being able to hear that in a finished product and seeing them being so proud of it, I think that is what makes everything so worth it with this project and working with everybody that's involved in it.
Heather 14:
50 Yeah, it seems like almost unexpected for them. Some of the women that I've spoken to, they really aren't even expecting the outcome to be as powerful or as emotional as it is. Dr Bui, can you tell us just a little bit about the project itself – I mean, the partnership with Roy Thomson Hall and really how you got involved in the beginning?
Dr Esther Bui 15:
07 This, like many other beautiful things in life, happened coincidentally in a hallway conversation. As an educator, I bumped into another educator at Roy Thomson Massey Hall, and we really just brainstormed on how we could make this world a better place as teachers. I shared with them the challenges I have in women experiencing pregnancy and so much unspoken anxiety and fears, much like Julianne has so beautifully expressed, and they shared with me The Jessie Project, which is a project that Roy Thomson Massey Hall had already started for teen moms through lullaby making. And so, that hallway conversation crystallized that we can do more for women beyond psychosocial stigma and financial challenges, so I'm actually super excited because, if we could establish a proof of concept for epilepsy, we can really look towards finding inroads for other chronic illnesses like diabetes, depression, anxiety.[delicate electronic music] So, this for me is hopefully the beginning of a crack in the glass ceiling to help women beyond just epilepsy and pregnancy. One of the challenges of caring for patients with epilepsy is that it's not a 100% cure rate. We can really change and make people seizure free the vast majority of the time—over 70% of the time—but there is still a margin of people who are struggling with ongoing seizures. And so, I've struggled with that from the very beginning, is, "What more can we offer if medications fail?" and I think the reality is that life is so much richer than the medications we prescribe. You know, at that 30-minute interface, you only see a slice of one person's life, and so if we can think of something beyond the traditional prescription patterns and how we see healthcare in general and recognize the richness that patients bring into the clinical encounter, that, for me, has been really a big catalyst for exploring what more we can do. And, really, music has been an important aspect of many people's lives and this really has blossomed because almost everyone understands the core value of a lullaby.[music fades out]
Heather 17:
27 It's true. Tell me a bit more about the project itself. I mean, how does it work, and how do you decide which patients might be a good fit for the role?
Dr Esther Bui 17:
34 Sharon really has taken the lead on this. I've seen Sharon blossom from a first-year research analyst and now a graduate student at Harvard, so I'm going to ask Sharon to comment on the process and the study itself.
Heather 17:
47 For sure.
Sharon Ng 17:
47 It's a very tight-knit collaboration between the University Health Network's Epilepsy Pregnancy Clinic that Dr Bui is basically chairing, and then also with Massey Hall and Roy Thomson Hall and the staff there as part of The Lullaby Project. And, really, what we do is we recruit and we encourage women to take part in the study if they're interested in it, and they will either be randomized to a control group or a group where they're part of The Lullaby Project, and with The Lullaby Project group, when we recruit these women and they are interested in taking part in The Lullaby Project, they are first matched with a singer-songwriter with the help of our staff and Massey Hall and Roy Thomson Hall. And then, they begin this ten-week-ish process where they meet with the singer-songwriter every week or so. They do essentially brainstorming of what they would like the lullaby to sound like. It kind of goes from a very broad process in the beginning, and then you see it get more specific and you see the melody start forming, the instrumentals start coming together, and then eventually the final product over the course of ten weeks, and some women even decide that they would like to record themselves and they take part in the actual recording of the music of the song. And, over those ten weeks, we collect different measures that we think are pertinent. And, at the end, they’ll let us know,"Hey, we have our finished product." We usually then will start the process of them reflecting on the experience and capture some of those key qualitative comments, as well. And, we do have an opportunity to ask them, six months down the line, how they're doing and how this project has impacted them. So, it's a lot of rich quantitative and qualitative data. We have a mix of scores, we have a mix of just paragraphs of writing, and it's been really rewarding, and it can be slightly challenging to just look at that data itself, but we've had a lot of cool things come out of this project.
Heather 20:
00 Could any of your patients do it or do you need a certain level of background in music to do this?
Sharon Ng 20:
06 We found that actually, predominantly, a lot of the women that take part in this study overall are novice. They're beginners in music and they do not have any background in it, and they say that too in the beginning, you know, "Can I still do this even if I have no musical knowledge"? And, the answer is, "Absolutely yes."This project was designed so that the singer-songwriter kind of guides you through the entire process and they're still able to create this finished product at the end, and I think music is also one of those things where it's kind of almost like a universal language, so it doesn't take a lot of knowledge to be able to partake in communication in that aspect.
Heather 20:
48 So interesting. You talked a little bit about some of the things that you're measuring as part of this research project, but what, specifically, are you studying? You know, what types of questions are you asking the women and is it more related to mental health or are you actually looking at seizure frequency, anything like that? Dr Bui?
Dr Esther Bui 21:
03 Yeah, one of the important things and core concepts of this work is we know that, if one person is transformed by this, it's a success, but we have to also recognize if there are important health measures that can actually be applied to a broader population. So, one of our most important health measures is quality of life and, you know, the concept that, in addition to seizure control, if your quality of life is terrible and you have comorbid depression, anxiety, loss of sense and empowerment, even if you're seizure free, your health measures are poor, you may still be disabled from many of the aspects of your epilepsy, so we're hoping to really explore not just the seizure frequency, but the quality of life, the kind of hidden aspects of care that we often neglect when we're so heavily focused on seizure counts and seizure medications.
Sharon Ng 21:
57 Another very key measure, aside from what Dr Bui mentioned, is we also are interested in pregnancy-related empowerment. It's kind of a newer scale. It's not as kind of well-studied as a lot of the ones that we've already been talking about, but it really is the idea of, "Do women feel empowered during their pregnancy to speak up, to advocate for what they think are important, and to feel like they are supported, either in care or in their community, etc.?" And, we wanted to measure this. We weren't really sure exactly what we were going to see, but I think what was very key to us is we wanted to see if this project would empower women and have an impact in, not only their pregnancy, but in their lives overall with their, you know, relationships with other people, their community, etc.
Heather 22:
48[upbeat electronic music] That's fascinating. I mean, I haven't really heard of that before, in terms of, as you say, being a scale. So, how does that factor into the uniqueness of this research, overall?
Dr Esther Bui 22:
57 I've searched far and wide and I've not found any collaboration like this in Canada, a major arts institution like Massey Hall and Roy Thomson Hall and a major academic centre like the University of Toronto and Krembil, so this is really unique. And, we've been doing this for about three or four years and I still haven't found them, so I'm really hoping that this inspires other academic arts institutions and, if there are programs that already exist, I'd love to collaborate and really create a community where art and science truly meet.
Heather 23:
28 Love it. Sharon, tell me, what have you found so far in this study? I know that you've been going for a couple of years, so far, so what have you found?
Sharon Ng 23:
33[music continues] We do have 17 people enrolled in our study. We have 10 of them in our Lullaby Project and seven in the control group, and to focus on just The Lullaby Project group, we've had just very rich and reassuring data that this is a musical program that women are interested in pursuing and they do complete it and they are working it into their very busy and hectic schedules.[music continues] What we see is that we have, basically, a 90% fulfilment rate. Nine out of our 10 participants finished the study, they have a finished lullaby product that they'll sing to their child or children. So, it's been a very high fulfilment rate overall, and a lot of the qualitative feedback that we've received from these women include a lot of positive emotions such as empowerment, such as connectivity to not only their pregnancy, but to those around them, and that has been very reassuring on our end.[music fades out] And also, we're happy to hear those things overall. In terms of some of the more quantitative measures that we've mentioned, for quality of life and, specifically, we use a measure that is quality of life in epilepsy, so it does tailor more towards this patient population that we're working with, we do see that, with the control group, we might have a general trend downwards in the quality of life over time, but we do see stabilization of quality of life in the participants in the Lullaby group. So, this, to us, is quite a reassuring trend that we're seeing, because the quality of life measure not only captures what we traditionally think for quality of life and health; it also captures things like the stress, worry, and a lot of the very behavioural and social parts of a person's health and life, overall. So, it is reassuring to see such a global and all-encompassing measure shows such a promising trend.
Dr Esther Bui 25:
38 I find it remarkable, and Sharon's just done the preliminary analysis and we'll be submitting it to the American Epilepsy Society meeting this year, but what is striking to me is the stabilization part and the ability that a music intervention—not a single medication—can actually enable women to feel still more stable and maintain the quality of life that they had despite, you know, ongoing and increasing concerns. Pregnancy, we know, is-- if anyone's been pregnant before, we know that the wait gets to you, the worries get to you, the imminent arrival of baby is an anxiety and worry-filled time as it is also beautiful, and so the fact that music, itself, can enable a stability so that women can continue to thrive and build a home for their imminent birth is quite remarkable. So, we're really excited to share this with the world.
Heather 26:
27 I wanted to ask you, Dr Bui, we've spoken a lot in the past about this whole pregnancy journey, particularly for women who are living with epilepsy. It wasn't that long ago that many of these women were told that they couldn't even get pregnant, and now we're at a point in the clinical advances and the research, and especially with physicians like yourself who are working with women with epilepsy, that the success rate has increased. And so, I wanted to ask you about that in the context of some of the challenges that women living with epilepsy, in particular, may face through their pregnancy and why this program or this project, in particular, could be so impactful.
Dr Esther Bui 27:
07 I've thought a lot about this and this, among many others, represent passion projects for anyone who's involved—for Julianne, for myself, for Sharon—and I think one of the most important concepts is that this is an invisible, highly-stigmatized illness, and it's not that you are manifesting with seizures every day. In fact, many of my patients are chief executive officers, lawyers, doctors, journalists, and they are some of the highest-functioning people I know, yet they carry with them this illness that is highly stigmatized. And so, the paradox of living with something so deeply filled with shame for some people yet functioning at the highest level in society, being a parent, is, you know, at the highest level of life for many cultures and communities, and so it's this divide. So, how do we bridge this divide, because I can't prescribe a pill for this? And so, music storytelling, being able to enable women to empower themselves and redefine a narrative that had long been taken away from them, for me, is transformative in this pregnancy work because there are moments in our lives that are important inflection points, and pregnancy is one of them, and I saw an opportunity to really harness that power of an inflection point for women in pregnancy in the epilepsy clinic to say, "This is my time. This is my story to tell." And so, there's nothing more empowering than knowing that you're bringing another human being into this world, so this was a powder keg of opportunity for women who have long struggled and felt unheard.
Heather 28:
50 It's so beautiful and I know that something else that you're very passionate about is gender-specific research, particularly as it pertains to women. So, is this part of that strategy, part of the work that you're working on, just to really better understand the impact the women with epilepsy of music as medicine?
Dr Esther Bui 29:
05[gentle electronic music] Absolutely. I have to say that it's always shocking for those who hear, whenever I present the data, that neuroscience is really heavily based on the male model of the brain, and sex is biological, gender is psychosocial and cultural. They are two distinct things, and women and females' both-- sex and gender issues have been really under-explored. It's changing with work like this and many others. But, if you think about storytelling itself, women are storytellers. We are just natural storytellers and there is something about community, connectivity, language processing, legacy building, the slow-cooking stuff of life.[Heather chuckles] Women inherently resonate with that. And so, to build this, women resonate. It's something that comes very naturally. What is not natural is the five-minute neurological visit in a very complicated case where you have 101 questions that you simply don't have answers for or time to provide answers for. So, we're really trying to carve out an important, not niche, actually– important fundamental of care, that sex and gender aspect, both from prescription patterns to care, and also culture of care is important and storytelling is part of that culture.[music fades out]
Heather 30:
27 Definitely. I have personally had the opportunity to hear many of the lullabies from many of the women who are patients of yours or part of this project, and it really is so heartwarming to hear the finished product. And, I wonder, with you following these women through the process and through the 10-week program, what is it like for each of you to hear that finished lullaby at the end, and how does it make you feel? Sharon?
Sharon Ng 30:
51 I think what I am most moved by, at all times, is just how accomplished they feel, how proud they are of the finished product. And, a lot of the times I've heard some of these women that I remember because I consent them in the beginning, they're like, "You know, I don't know if I can carry you through with this. I think I'm going to be very busy. I think I'm going to be very overwhelmed," and you know, they just very kindly let me know in the very beginning, they're like, "I don't know if I can do this, and I don't know if I'll be able to meet the expectations that you ask from me." And then, 10 to 20 weeks later, they come back and they, "Here's my finished product and I feel so accomplished and I'm so proud,” and, "I'm so excited to share this with my community, with my family, with my friends." And to witness this blossoming, but also just see the change—this very minute change—in their sense of accomplishment, in their just ability to create something, I think that is always the most heartwarming thing for me, and it makes everything worth it.
Dr Esther Bui 32:
18 Honestly, I have laughed, I've cried, and I've listened to these songs many times, and one of the most special moments I've had is I've listened to them with my own children, and there's just something really beautiful about another generation recognizing what someone else has gone through, and so many of the patients who have contributed to the songwriting process, they're my heroes. These guys are full-time moms, they're teachers, caregivers, they've sacrifice so much to bring these beautiful babies into this world, and when I can just witness this with my own children, there are so many emotions that come through, so I can't be more proud of what's been generated from The Lullaby Project.
Heather 33:
03 This whole idea of music as medicine, we continually seem to be coming back to it. I wanted to bring it up one last time in the context of this project, but just in general, what we're learning from science about the power of music to heal. Dr Bui, do you have any comment on that?
Dr Esther Bui 33:
19 Yeah, I mean, we've seen this in dementia where, you know, someone who can't even recognize immediate family members can start crying at the song that was played at their wedding. You know, we've seen this in behavioural therapy for advanced dementia where music can immediately calm someone who's agitated. We know that heart rates can be altered by different music. We know that my heart rate can increase when I listen to a song that is motivating or energetic. So, I think we recognize the inherent value of music, but we've really never recognized and explored the inherent value of music in chronic illness, and especially chronic illness that is invisible. So, this, for me, is an exciting time to study, and it transcends geography and culture because this storytelling music part of this is different in Canada as it is in Europe and Asia and Africa. So, this is a seed of hopefully many more lullabies to come around the world.
Heather 34:
24 Back to the gardening. Always back to the gardening.[chuckles] Sharon, do you have any final thoughts or messages that you want to share?
Sharon Ng 34:
31[bubbly electronic music] Yeah, I think what is very unique about our project overall and as Dr Bui mentioned, she talks a lot about how music can create physiological changes, and what I think is specific about our project is that it's more active music creation that we're taking part in. A lot of the time, it's not just passive listening but it's the idea of the creative process of not only taking part in the writing of the music, but also in the recording, in the lyrical genius that you need to embody to be able to create a lullaby, and I think that process, I think it encompasses a lot more than just music. It's creativity, it's unlocking different parts of your brain that you probably don't use on a daily basis, and I think that this active music participation is one thing that nobody has really done yet, I believe, and we want to see how that may impact not only women with epilepsy, but people with chronic illnesses, overall.[music fades out]
Dr Esther Bui 35:
33
[unclear 00:35:
33] has really reminded me of how valuable it is to have our community partners. In addition to Roy Thomson and Massey Hall, we've got amazing singer-songwriters and musicians. I've met some of them and Liz Locher is an example of many amazing musicians that have contributed to this. So, I've sat in one of the groups and really recognized how much heart and love is placed into helping women really, like, midwife their dreams, to quote from my favourite peloton instructors.[Sharon laughs] And so, we are only being a witness, but also an active witness to enable women to tell their stories.
Heather 36:
11 What's next for this research? What do you see coming out of it?
Dr Esther Bui 36:
17[gentle electronic music] You know, in my dream of dreams, what I would love is that governmental bodies, institutional bodies, funding bodies can recognize the value of music, and the simple beauty of creating a lullaby can actually stabilize someone who is already struggling with a difficult disease during a difficult time in life and to really catalyze something that's even more beautiful and more powerful than an individual story, which is our collective story. A simpler dream, though, is that one person hears one song on the Lullaby and is inspired to continue to build the work that we're doing, simply by sharing it with others, and hopefully other women can hear and be inspired by many of these lullabies created. One of my all-time favourite quotes is from Margaret Atwood, which is,"In the end, we all become stories," and this is the legacy work of what we see our participants contributing to. They're here, writing their story, and their children will hear these stories again in childhood, but not just their children, but their grandchildren. And, for me, this is the lasting legacy of how these, you know, musical lullabies are really the story of people's lives.
Heather 37:
28 Beautiful. I just had a smile on my face for our entire chat today. It really is a beautiful story and an amazing project. Thank you both so much for being here today.
Sharon Ng 37:
38 Thank you so much.
Dr Esther Bui 37:
39 Thanks for having us.
Heather 37:
40[Your Complex Brain theme music] Thank you to Dr Esther Bui and Sharon Ng for joining me on the podcast today. Thanks also to Julianne Hazelwood for sharing her heartfelt journey. If you'd like to hear more of Julianne's story, head to our website, un.ca/krembil and click on the show notes for today's episode.[music continues] This episode of Your Complex Brain was produced by Jessica Schmidt. Dr. Amy Ma is our executive producer. Thanks also to Kim Perry, Ali Wilson, Meagan Anderi, Sara Yuan, Liz Chapman, Emma Krebs, and Lorna Gilfedder for their production assistance. If you enjoyed this episode of Your Complex Brain, please tell your family and friends, and don't forget to leave a rating and review on your favourite podcast listening app. We'll be back in two weeks with another exciting episode. Have a great day.[music continues then ends]
