Awakin Calls » Grayson Sword » Transcript
Grayson Sword: 18-Year-Old Wisdom
Guest: Grayson Sword
Host: Rish Sanghvi
Moderator: Bela Shah
Welcome to Awakin Calls. Every Saturday, we host a conversation with an individual whose inner journey inspires us and whose work is transforming our world in large and small ways. Awakin Calls are an all-volunteer-run offering of Service Space, a global platform founded on the simple principle that that by changing ourselves, we change the world to create a more compassionate and service-oriented society. Thank you for joining us.
Rish: Good morning, good afternoon, good evening!. My name is Rish and I am really excited to be your host for our weekly global Awakin Call -- welcome, and thank you for joining us! The purpose of these calls is to share stories that help plant seeds for a more compassionate society while fostering our own inner transformation. We do this by holding collective conversations with guest speakers from all walks of life -- speakers who inspire us to live in a more service-oriented way. And behind each of these calls is an entire team of ServiceSpace volunteers, whose invisible work allows us to hold this space.
Today, our special guest speaker is Grayson Sword . Thank you again for joining today's call! Let us start with a minute of silence to anchor ourselves into the space.
Welcome again to our weekly Awakin Call -- today, in conversation with Grayson Sword . As an all-volunteer offering, each Awakin Call is a conversational space that is co-created by all participants on the call, and we invite your active involvement in the conversation. In a few minutes, our moderator Bela Shah, will begin by engaging in an initial dialogue with our speaker and by the top of hour we'll roll into Q&A and circle of sharing -- where we invite all your reflections and questions. I've opened up the queue right now, so at any point, you can hit *6 on your phone and you'll be prompted when it's your turn to speak. You can also email us firstname.lastname@example.org or submit a comment or question via the webcast form, if you are listening online via the webcast. We invite your active co-creation of this space through your shared reflections and direct engagement with our guest.
As mentioned, our moderator today is Bela Shah. Bela is a ServiceSpace volunteer who is passionate about service learning and transformational leadership. She started her own journey in this space as a 16 year old volunteer in rural Mexico (through Amigos de las Americas) and currently serves as a mirror and guide to young leaders from around the world with Dalai Lama Fellows. Bela?
Bela: Thank you, Rish. So today, I'm really excited to introduce our guest, Grayson Sword. Grayson is a high school senior who just turned 18 a few days ago. When she was 13 years old, Grayson was diagnosed with a rare heart condition. Given almost no chance to survive, she lived, finding strength and compassion and resilience. And she's been on a mission to raise compassion in the world ever since. After surviving her surgery and overcoming physical and emotional challenges Grayson has filled up more than a thousand pages of gratitude journal, served with at-risk girls in rural Nepal, co-founded Camp Good Trouble, which aims to build leadership skills and character in marginalized children. She's delivered her first Ted talk about compassion and healing. And if that's not enough, Grayson has created dozens of works of art as part of her healing process. On today's call, I'm honored to be in conversation with you, Grayson and learn more about your perspective on healing, compassion, community and service. Thank you for being with us today.
Grayson: Thank you. I'm honored to be here.
Bela: So I wanted to start off with this question about the before and after, which I believe you mentioned during our initial conversation. And so there is a before and after, if you have a big, life-altering event. Can you begin by describing that day at the doctor's office when you were 13 years old?
Grayson: Definitely. Yeah, until I was 13 years old, until January of 2015, I lived a relatively normal life, I'd say. I was an athlete and a student and didn't have many cares in the world, in terms of in terms of health. And one day, I was running in gym class in January and I felt kind of funny. And I am a cross-country runner so I didn't think much of it, but I ended up fainting in my gym locker room, because I was too embarrassed to stop running in front of my peers. And I made a trip to the cardiologist the week after, at the urging of my mother, who wanted to make sure I was okay. Even though all of the people involved said, you know, it's probably stress. And I went to a cardiologist, and they did a few tests, an echocardiogram and an electrocardiogram.
And only after the echocardiogram ultrasounds, did the doctors kind of take us into a room and my cardiologist came in. And so, you know, we didn't think you had a problem until we did this test, but turns out you do. And at that point, I was pretty bored until I heard the words “open heart surgery”. And then my world kind of got synced up.
So, yeah, so back to that that time, when I was in my cardiologist room, I watched my mom start to cry. And she kept saying, over and over, that "It's okay," but I could tell that things weren't supposed to be okay. And my doctor tried to explain the course of events that were to follow. I would be receiving open heart surgery, three weeks after that day, and would have a six-month recovery, with two months of bed rest. And I kind of listened to all of that numbly.
And as soon as my mom and I left the cardiologists office, we both just collapsed on the ground and started crying. And it was a really poignant moment, that I still remember deeply, four and a half years later. And I knew that things were never going to be quite the same. And in that moment, I wasn't sure what the rest of my life looked like. My cardiologist had to tell me that there's a chance that things might not go well in the surgery. My defect is it's called an anomalous left coronary artery from the right coronary sinus -- a mouthful, I know. And it only affects about 0.047 % of the population. So there aren't a lot of long-term studies done on it. So they didn't really know what we were getting into. But from that moment on, I knew that the course of events of my life, as I saw them, were going to be drastically altered.
Bela: Wow, and I think you knew at that time that the surgery was scheduled about three weeks out from when you were given this diagnosis, so I'm curious to know about your life in those three weeks. And the question is -- how do you live your life knowing that you may not be alive in 3 weeks? How does that change your perspective?
Grayson: It's a lot for a newly 13 year old girl to handle. I actually, I'd been journaling in the weeks before and painting. So I decided that my 2015 New Year's resolution was going to be to write every day. I'd been writing before, but that was when it really started. And so I have the journal post before my surgery and before the fainting. And the first line of my journal that day was something along the lines of -- today was the most heartbreaking and miraculous day of my existence.
And that kind of just puts things in perspective of, you know, what do I do now? There wasn't a set plan. I mean my doctors had a surgery lined up. And they said, you know, this is probably the only surgery you'd have to have, its open heart but it should be it. But there was that possibility that I wasn't going to live. And from that moment on, I just knew that I had to surround myself with the things that matter to me. And this became really really apparent when my life was shortened to three weeks. And so I started with surrounding myself with family and with friends, and that came pretty naturally, once people heard about my diagnosis. And you know, we had family and friends coming and visiting and sending gifts and letters.
And I actually came back to school the same day. I got my diagnosis, I went to the cardiologist in the morning, but told myself I needed to go back to math class. I was taking a high school math course. I'm in eighth grade and knew that I could only have 11 tardies or 11 absences. And once I got to class, every single person in my 25 person class came up, and just solemnly, respectfully gave me a hug. People I'd never talked to. People I wasn't close to. And that was also a poignant moment, where I just felt this unfiltered love from people who didn't have to love me.
And so I surrounded to myself with that for three weeks. I did a lot of journaling, a lot of self-reflection about what I wanted to get out of life if I was able to live through this experience, or just a lot of reflecting on the life I lived thus far. And you know, I was only 13, so I hadn't done very much mental things, but I had lived with the love of my family and friends for 13 years. And I spent a lot of time outside walking my dog, and sitting outside.
I live in the mountains, so I did some hiking but it was a time of reflection and gratitude and prayer and hope that I was going to be able to see the light of life after this traumatic experience and luckily I made it out okay. Yeah, it was certainly some of the strangest but most enlightening three weeks of my life.
Bela: Thank you for sharing that. I still can't believe you went to math class. Definitely speaks to your resilience and discipline at a very young age. Can you also share about (something that came up in our initial conversation) how community emerged for you and how what community means changed for you, in that time both before your surgery, but also after. Can you share a bit about how that community emerged for you and what you see as community?
Grayson: So I've been part of several communities since I was little -- family and family friends and in my schools and activities and I just felt the love and support of all those communities even more in that three-week period before surgery, but especially after surgery.
I received dozens of letters from distant friends, distant family, that I now have in a shoe box that I look at when I'm sad. I got an influx of letters and people in our neighborhood community set up a meal train for my family in my initial recovery and my school community was especially wonderful in my recovery. They had every single student (I went to a large public middle school) every single student signed a big card, you know, 500 kids, for me and they brought it when I went home. And people who I had never talked to, people I didn't know reached out an incredible ways and my mom always remarks about how kind people are and how this experience was traumatic and really scary, but how sometimes these experiences bring out the most compassion in people and that was wonderful.
And I actually was able to be part of another community of kids who had had similar diagnoses as me, who had been recipients of heart surgery. It's a summer camp called Camp Block in Charlotte, North Carolina, outside of Carolina. And I was able to volunteer there for a day in 2017. It's basically a summer camp for children with congenital heart defects. I was launched into community of children who had had similar and even worse experiences than me. Seeing their zest for life and their gratitude for friends they'd made and those experiences was enlightening, to say the least. But, you know, I'd become part of this community that no one wants to be a part of, because childhood illness is terrifying. But those are some of the most inspiring children and people I've ever met. And I've just been blessed by support of several communities over the past few years and I can't wait to see how that manifests in future time.
Bela: You've shared also that pain is universal, healing is collective. Can you elaborate what you mean by this?
Grayson: Yeah, so as I've gotten older and been exposed to the world more and more, I've quickly found that no one is devoid of pain, that pain as an integral human aspect and that pain can range from simple transgressions throughout the day, to not getting invited somewhere (which is the typical middle school pain!) but there's also just Earth-shattering pain all around in every community, you know? It's war and death and illness and poverty and racial violence and there's so much hurt in the world and so much pain to be experienced by people.
But because pain is universal, because everybody has some aspect of pain, I believe that healing can be collective through a community, through the support of a community. And I found that my healing journey has been greatly impacted by the support of people, the empathy of people in my community. And whether that's kids who have gone through similar experiences at Camp Block, or if its friends and family who have reached out and written me letters or brought me homemade stew in bed, and just reaching out to somebody and letting them know that you hear their pain and you're there to shoulder it and to help them through their experiences. I think that's a way to facilitate healing. I found more and more that has been instrumental in my healing, which is far from over, but it's something that I found more and more as I've grown up.
Bela: So you've been on this incredible healing journey and like you said, it's not over. I was curious to understand healing a bit more and I looked up some definitions of it, and some definitions are: to make free from disease, to make whole. And another definition says: to restore to original purity or integrity.
And I'm curious to know, just in the past few years, what healing has meant for you? What you've learned about yourself and what that inner journey has been like for you?
Grayson: Yeah, well, I know that physically I will never be completely healed. My defect is fixed and my doctors foresee no more surgeries, if everything goes, well, of course. There hasn't been a ton of research done on my cardiac issue and things can happen. But my chest is currently wired shut with titanium wire. I like to tell people I'm part robot sometimes. But anatomically, I will never be completely healed. But I think that's a unique part of me and you know, I have a six-inch scar on my chest and people always ask, “Are you going to get it lasered off?” and I say, “No it's a part of me and it's a part of everything I've been through.” So I don't think healing is restoring to original purity, because I think that healing is about growing, and it's about learning about the ways of the world and about becoming better in all aspects, not just physically. I think a lot of my healing has been more mental and emotional. It's all connected. But I've gradually gotten better physically. I'm actually in the best physical shape I've been in in the past four years. I'm back to playing sports, which is really awesome. And I haven't had any cardiac issues, really, in about a year, which is miraculous considering that I had a ton of issues right after surgery that pushed back my recovery several months.
But healing, mentally and emotionally, has been a process that I think all people go through after trauma, and this experience will extend for several more years. But I think everybody is in a constant space of healing and about finding ways to have a positive impact on others and that way, a lot of my healing stems from not only support of my community, but also through gratitude. It seems kind of paradoxical that the gratitude stems from getting a life-altering, possibly through a life-ending diagnosis.
But like I said, my first journal post that I ever did, I ended it by saying that I'm so grateful for this diagnosis and for this wake-up call, as to how I want to live my life. I was just starting my teenage years, having turned 13 a few months before. But I knew that this was going to be an experience that was going to change my life.
And so I started journaling every day and ending the journal post with three things I was grateful for -- things stemming from, simple things like I was able to walk for a few minutes without having to sit down, this is a big deal right after surgery. Arbitrary things -- like I had a really good breakfast. But also things like -- I'm grateful for the presence of the specific person and what they did as their act of kindness today.
And that just brought me back to Earth in terms of dealing with all of the trauma that I was going through and the mental and physical and emotional aspects. After the surgery, although I had been healed physically, I was mentally exhausted -- to try to reconcile all of the thoughts that are going through my mind about recovery and about the state of my body and being in a children's hospital for five days. A hospital is a place of incredible miracles, but I like to say, also a place of profound sadness.
And you know reconciling the the truth that life is short and fleeting and death is around and even in children who did nothing wrong. And so that was hard on me emotionally and figuring out how to reconcile all that. And I'm still doing that -- in my healing process, it has become more and more apparent to me that I have been called to dedicate my life for service, and towards extending what I've learned in the 4 year period towards others. I think I'm really excited to keep doing that and to do even more in college and beyond hopefully. I'm far from healed, but nobody will ever be healed, and we're all there to help each other on our own healing Journey.
Bela: I think it was deeply inspiring and to fill more than a thousand pages of gratitude! Were there days that you didn't feel like doing that? Was it just something you have to promise yourself ? What I mean was -- was it something that you needed to do? Sounds like -- well, I'll let you answer that.
Grayson: Yeah. Well not only had it been, you know, a New Year's resolution to write every day, but it was kind of my own therapy in a way, trying to deal with everything. I was on bed rest for two months and cut off from my school community for the most part. Being hyper aware of my body for that long, you know every irregular heartbeat, I had constant anxiety that things were going to unravel at the seams, my like cardiac sickness, especially because the doctors didn't really know what they were dealing with, until they kind of got in there. They said that they weren't able to fix it the exact way they would have liked. Those two things aren't exactly how they're supposed to be. It was tough to kind of reconcile that and the fear of mortality. I was trying to be part of my 8th grade year, without my grade friends and without my school for a while.
But everyday I just told myself there was a good thing that happened today. And it is true. Even if I sat on the couch for eight hours -- that happened a lot, when I was forced to do that. Or when I was, you know, right before surgery, I thought, “This won’t be too bad, I've been an athlete my whole life. I’ll heal really quickly and everything's going to be okay.” And it was my first kind of foray into the life of somebody with a serious medical issue, and that's not necessarily the case that you can the spring back up, right after the surgery! But everyday, I did write down something. Something little. Like my mom made a really nice breakfast. My brother made a joke that I found funny or something. Looking back, I have all the journals here. I filled about 8 of them since then. I remember a certain aspect of a day and that brings a smile to my face, and that's why I did it. I do believe it was an integral part of the whole experience.
Bela: I also want to have an opportunity to have you share about the role of Art in your life? Can you describe what the process was like for you and continues to be, for you to be able to express what you're feeling?
Grayson: I've been taking art lessons you can say for about 10 years and they're not typical lessons where your teacher, you know, people do techniques and you draw a specific thing. My neighbor Claire is a professional art teacher and a professional artist. And she said, “Hey, come down to my studio loft and pick up some paint and a canvas and paint the essence of nature!” That was my first assignment when I was 8 years old (laughs!). And she taught me about abstract paintings, and about how abstract paintings can be a manifestation of people's emotions. And so I’d been taking lessons before surgery, and then I had a brief kind of intermission period where I didn't, obviously.
So when I was back in her backyard, I came to her as a mentor and a teacher, and said, you know, this event has happened to me. And I'm so young and I don't know quite how to deal with it. You know, I'm kind of swimming in thoughts about, in constant anxiety about my own health, and about the health of my family and what do I do?
And she said, “Well, I've always told you to paint your feelings and that's what we're going to do.” So I picked up -- the first painting I did, I picked up some pink and orange and red paint and painted just an abstract, a huge canvas with these colors and water and let the paint tell the story. I came back and drew in an anatomical heart. And after that, I had been walking in her garden and thought like why don't I paint an orchid on top of it? And I did and I painted a forest of trees in the background that looked like veins, and and it was this whole giant canvas about my own healing. This Orchid was blooming from my heart. And that's how I was feeling -- things were growing stronger physically, and mentally, and emotionally.
And that was the first painting I did in a series of paintings that I call ‘Rebirth’, and it includes about a dozen paintings from the past few years. They tend to start with abstract acrylic paint. Or not always. There's one a of the figure of a woman who is in a pool of water and I wrote in little tiny words all on her body. Words that I hoped people would describe me as. Things like resilience and strong and kind and there are hundreds of little words on this woman's body. And so little paintings like that, little and big paintings like that, have become a collection, delineating my own healing.
So that and you know, the power of written word and my gratitude journals, the power of art has been a physical manifestation of the mental and emotional journey I've gone on. And actually one of my most poignant memories from right before surgery was going to look at a couple of works of my art in our local Art Museum. It had been part of a scholastic competition, I've won a few awards for. And I remember that day. The sun was shining right on the art gallery. And I took a picture of my family and it was this um, this kind of angelic moment of you appreciating the artwork of other people. And I think art is a kind of a manifestation of people's being. And so art has been really prevalent in my healing and I hope to continue giving of myself in that way in the future.
And unfortunately, Clare my art teacher had a stroke last year and she lived. But she was paralyzed on her right side. And so the person who arguably other than my parents taught me the most about healing, and about life in general is dealing with her own journey of healing. And so that pain of my surgery has has been heightened by events like that. But you know watching the journeys of other people has inspired me to continue fighting my own battles. And as I've grown and been more aware of the medical community, people's stories about overcoming adversity and about extending love of life to other people have been really inspiring. So, I hope to continue learning about other people's journeys in the future.
Bela: So what I'm hearing from... Thank you, again. This is really so inspiring and beautiful. But because of your experiences, your depth of empathy and being able to deeply relate to what others are feeling and experiencing, small or large, is incredible. How do you, I guess, I'm curious to know how being able to have that depth of empathy has shaped your relationship? You know, in the past few years, how its deepened some of your relationships with family or friends? Yeah. Tell me more about the empathy and how that's changed you.
Grayson: Yeah, well yeah, obviously my experiences were so monumental and I remember being in the hospital and the room next to mine belonged to that of a four month old child, a girl, who had been born with half a heart. And her parents have stopped visiting her every day, because they worked full-time and had four other children to take care of. And this sounds cliche, but I felt part of my heartbreak again for her. And being in close proximity with thousands of children in this hospital and children's hospitals are like I said, not always a happy place. And you know, the intercom would buzz and there'd be a code blue and I knew somebody was having cardiac arrest, and that deeply moved me, in terms of how precious life is. And how I think humans are called to be in service with other people and to other people in their lives. And how I was going to do that, you know, once I started to heal from surgery.
And it started just about a week after surgery. It was Valentine's Day and I remember being in the hospital and wondering what kids did on holidays? And what that looked like, if you were recovering from a surgery or really sick, or anything. So I made some Valentine's Day cards for the kids at my local hospital. It's become a tradition, but I decided to start with little acts of kindness, to people, to eventually lead to bigger ones. But, being able to have been in the place where I needed the support of the people in my community, and wanting to extend that to other people; and that started, you know, with reaching out to people who I found in the hallway, who looked upset and I would not corner them. But, you know, come and say, “Hey, you know, you look sad. Is there anything I can do for you? Or do you want to talk?” And that eventually led to -- I have, a kind of tradition, of just writing letters to people, every week, small and large, and you know, of course, birthday notes and things like that. But I really believe in the power of a written letter, especially since I received so many during surgery. And so, that's become one of the things I've done.
But yeah, I think empathy is just, you know, letting people tell their stories and actively listening and, and taking what they have to say, you know, really thinking about the weight of their words and you do not always offer in a solution right off, of the bat, because a lot of times, if people are opening up to you, they've had options, that they've exhausted their options and being present, in a conversation with somebody and working with them and, and caring enough about their life and about their struggles, that has been something I've tried to develop, over the course of these past few years. And I found that sometimes people are surprised, you know, that the other people are, looking out enough, are receptive enough, to sense something’s wrong.
And in the age of social media, it's really, really easy to reach out to somebody. And I've grown up really, always in the age of the cell phone, and so it's very easy to text any of my friends and ask them about how they're doing. But, that and letters and talking to people is something I found that I really enjoy and that I find it's really constructive, in terms of building relationships with people. And I've definitely strengthened my relationships with friends and family since surgery, you know? Being so close to death at such a young age, really put into perspective what matters in life. And I'm going to college soon, so I'll be starting my journey into a new community, but I really appreciated deepening my relationships with people over the past four years.
Bela: You have written or you've made a promise to write a lot number of letters before you graduate?
Grayson: Yeah, That’s right
Bela: I think you said to every single person you can think of, that’s touched your life. Is that accurate?
Grayson: Yeah, that's about right. I go to a small boring school, I’m a day student. But I go to a school where there are about 280 students, and the majority of teachers live on campus and its really a tight knit community, and where I know -- everybody knows everybody's name. I could name every single person in the school and probably give you a fact or two about all of them. But I have grown so close to, to these people in my school community, and I don't always tell them how much they mean to me, or they don't always tell me, you know? But these experiences I've had over the past four years, it's making it harder and harder to graduate in 42 days. But I really love the power of letters and I have my favorite letters hung up, above my bed that I kind of refer to, every once in a while.
And yeah, I've made it a goal to, you know, people tend to give graduation gifts to friends and everything. And I thought I'd accompany them with letters, because, I think concrete evidence of why you matter to somebody, is one of the biggest blessings from somebody. And so hopefully, I guess friends, who are tuning into this call now, know my secret. But yeah, over the past, the past few weeks and the next month, that's a project that I have going on.
Bela: So you have one favorite letter hanging above your bed?
Grayson: No, a few of them. Actually, three. Yeah, I have friends far away and just when I read them, it kind of brings me back down to Earth, if I'm having a bad day or kind of need encouragement. And so yeah, I think that concrete evidence is really important.
Bela: There's just -- there is a really, inspiring aspect of service that is threaded throughout your life, especially in the past few years, you know, whether that shows up as gratitude or appreciating people through letters or sharing the beauty of your art. And I know that you've also spent some time, volunteering and serving through different programs. Can you talk about the summer of 2017 when you were inspired to serve in rural Nepal?
Grayson: Yes, in my sophomore year of high school, I came across an organization through my school called “Students, Shoulder-to-Shoulder” and it's based in Vail, Colorado. It's a non-profit that seeks to connect high school students to global NGOs, in pursuit of what they like to call ethical leadership. And their slogan is ‘ethical leadership begins with you’. And they offer about 15 trips, all around the world, domestic and international, connecting globally-minded students, who want to enact real change, to non-governmental organizations based in the places they serve. A term that I've heard more and more as I've gotten older, as voluntourism, about, you know organizations that do service, but don't necessarily do it in a sustainable way, for or what that community needs. So Shoulder-to-Shoulder really works on identifying those non-governmental organizations who are doing the work that their communities need.
And, so, through ‘Student Shoulder-to-Shoulder’, I went to Nepal in summer 2017 for three weeks and worked with an organization called the Small World, which is Nepal based, in their capital city of Kathmandu. It's an organization working to increase girl’s literacy and empower women and girls in Nepal to break through, the gender gap and to pursue better lives for themselves. And the Small World has built several schools, more than a dozen schools in rural Nepal. They provide access to sanitation and, and scholarships for women and girls and other children, who don't have the means to go to school.
And their newest project is a girl's dorm or well, they have several girls dorms for higher education. But they have a girl's dorm in Kathmandu that they call the Himalayan Hope Home, and it's a home for thirty girls, who they've rescued out of risky situations in rural Nepal, you know, including homelessness and human trafficking and extreme poverty. And instead of an orphanage it's a place for the girls to stay, until they're eighteen.They are part of a huge family of other girls who have similar experiences and they are, you know, cared for and monitored 24/7 by the Small World staff. And in essence they are a big family and they have access to education and to meals and to sports and leisure and all of that. So when I was in Nepal, we helped the Small World construct, two new schools in rural villages in central Nepal near the Everest region. I also had an opportunity to meet the girls at the Himalayan Hope Home and work with them.
And, that trip, you know, other than surgery, I think that trip has been the most monumental experience of my life. It was the second time I've ever travelled out of the country and it was in the midst of my worst year, health-wise. I’d say, 2017 was not a not a great year, health-wise. I struggled with an issue called post-pericardiotomy syndrome where fluid pools in my chest wall and gradually restricts my heart function. And my mom said I don't know about you going to 8,000 miles away, like that's, that's, pretty terrifying. But when I read more about the trip, I had this kind of epiphany moment of -- this is what I have been called to do and this is what I've been called to learn about.
And I got there and it was transformative, to say the least. I know it's very cliche thing to say, but, just seeing the care that the Small World employees and founders have given to the Himalayan Hope Home girls and to this idea of empowerment, you know, all of these people have dedicated their lives to helping the lives of others, and to do it selflessly. And you know, an NGO, so it's a non-profit and the founder, the two founders are the husband and wife team -- their names are Karma and Sanam Sherpa, and we got to learn about their experiences and why they do what they do. And just seeing this community that they've built around them, of volunteers and of children and workers, it was just completely inspiring. And I knew that not only would I be back in Nepal, at some point in my life, but that I was going to dedicate at least some of my time, to, to learning how to do what the Small World is doing, both in my own community and hopefully in the future.
And that kind of brings me to the end of the summer of 2017, about a month after -- no, it was actually 2018, the next year, in 2018. Two of my classmates who also went on a Shoulder-to-Shoulder trip -- so, they went to Nicaragua and Kenya in that same 2017 year. They had been working on tutoring children, marginalized children in Nashville in the city. They said, you know, we've all been to summer camps before and we've all had Shoulder-to-Shoulder experiences, what if we brought all that together in a summer camp? And so their names are Maggie and Nicole, two of my most inspiring and wonderful friends, I've ever met. And Maggie and Nicole decided to start a camp called Camp Good Trouble. They named it after a quote by John Lewis, a United States congressman and Civil Rights leader, Civil Rights legend, who said that it's our duty to make good trouble in our communities, and kind of empower people. And so Nicole and Maggie got all the logistics set up for the summer camp, that we had on our school's campus last year. And I was part of the volunteer task force, who helped out.
But, basically what happened was, children would come from, you know, from the tutoring program, that they already had, and just other members of the community. It was a completely free, five day, day camp where kids would come in, in the morning. We would tutor them for a few hours, but not, not just traditional tutoring in the classroom. We would go, you know, read under the clouds and do team building things and make science experiments. And then after that, we would all have the kids do traditional summer camp activities. They swam in the pool and rode horses.
And I was actually in charge of the arts program. So I got to take my love of art and what I knew art had the power to do and share that with the children. So we did five different art projects throughout the week. And, you know, Nicole and Maggie, their original vision for Camp Good Trouble, their slogan was ‘Moving minds and moving bodies to someday move mountains’ and their goal was just to inspire children to see their own worth in the classroom and out. And so we had about 30 children in the first year. And I was just so lucky to be a part of that experience. And we're setting up for a year 2, this year, at the end of July. But, yeah, being part of that community movement started by two students who wanted to make change in their communities and how Shoulder-to-Shoulder has impacted my experiences in service and how the Small World has impacted all of that, it kind of all has woven this web of service and gratitude and compassion, that I think I found my niche, hopefully. And I'm looking forward to exploring ways of community engagement and involvement later in life.
Bela: It's amazing what you and your friends have done through Camp Good Trouble. It's so inspiring.
I want to go back also to your experience in Nepal. You said that it was as monumental as going through open heart surgery and everything that you experience in the aftermath of that surgery and that's pretty significant, I would say. I want to hear a little bit more about your time in Nepal. You describe the organization and the work that it does, but I know that you also had the opportunity to spend time with thirty of the girls that were part of this shelter that you described What was it like? What was your experience getting to know them? And what did you learn from them? What did they learn from you?
Grayson: Yes, Nepal was definitely life-changing and especially in the wake of all of my experiences after surgery. I guess surgery has been the most monumental thing, but Nepal is definitely a close second. It was about the end of our trip where we went back to the Himalayan Hope Home in the last few days. And when we first got into the building, the first experience we had with the thirty girls was where they came up to us and introduced themselves and handed us these homemade bracelets. Their yarn bracelets are far more advanced than anything I've ever made, and mine was made by a six-year-old. But mine happened to have a heart pattern, which was just a funny coincidence. It brought a smile to my face.
Namaste is a very traditional greeting in Nepal. It has connotations of peace, like the spirit in me greets the spirit in you -- that's one of the definitions of namaste. So the girls introduce themselves and said what village they were from. Nepal is a country where dance is very prevalent. And so the girls performed this dance that they'd been working on for months for us, and then we all got into a big dance circle. I am not a great dancer, but one of the girls pulled me into the center and we just kind of made things up as we went along. But it was just one of these isolated moments of pure joy that were few and far between, where it's just pure ecstasy. But that was one of those moments where thirty girls who we'd met thirty minutes before had completely welcomed us into their lives, into their homes. We had a sort of language barrier. They were learning English. The Small World was teaching them, but we were able to communicate both in language and in dance and song.
It was incredible to be part of a community where all these girls were united by love for each other and that love transcends blood relation, because a lot of them were from villages hundreds of miles away from each other, and they were only brought together by The Small World and by the pillars of The Small World's mission. And just seeing their tenacity in overcoming past trauma and their dedication to getting an education, and all of the girls talked about how their favorite part of the day was going to school. I've always taken school for granted growing up in the US and just seeing their tenacity in overcoming their circumstances and their gratitude for things that I've taken for granted in my life was really powerful.
And kind of gets at the idea that I think that people are called to use their privilege for good. And there's so much inequity and inequality in the world and how real change can happen by people getting interested in issues that don't always affect them. And I think that's one of The Small World and Shoulder-To-Shoulder's missions, is to get people interested in ways to change the world they wouldn't expect. The whole experience was really incredible and has impacted hopefully what I want to study in college. I'm not quite sure yet, but I could definitely see myself going in the way of public policy or global health or something along that aspect. A lot of people say, "You're going to be a cardiac surgeon, right?" And that's a possibility too. Luckily I've got some time to figure that out. But yeah, all these experiences have kind of collectively made me into the person I am today.
Bela: Thank you Grayson. I'm going to turn it over to the callers now and to Rish.
Rish: Thank you. Thank you, Grayson and Bela for that amazing dialogue. So we're going to switch over into the next 25 minutes or so into Q&A and circle of sharing where we invite reflections and questions from our listeners. The queue is open right now so at any point you can hit star six on your phone and you'll be prompted when it's your turn to speak. Again, it's star six. You can also email at email@example.com or submit a comment or question via the webcast form.
And while we're gathering questions, I guess I have a question for you, Grayson. Your story is a really moving one and what I heard over the last hour was your sources of strength. Community, that sounds like a really big one. You mentioned art. Are there any other sources of strength or places that you've gone to find resilience and strength in those moments when things are not looking so good? Could you share a little bit about that?
Grayson: Yeah, well, I've done a lot of internal thinking and reflecting on my own experiences and it's been definitely a growth, mentally and emotionally in terms of looking into myself. But I am a big fan of quotes from other people and hearing about other people’s life stories. And so I've kind of looked that way to other people and about how they deal with experiences. And one of my favorite quotes that kind of really got me thinking about healing is a quote by Cheryl Strayed, an author, and she said, "When you recognize that you will thrive, not in spite of your losses and sorrows, but because of them. That you would not have chosen the things that happened in your life, but you are grateful for them. That you will hold the empty bowls eternally in your hands, but you also have the capacity to fill them -- the word for that is healing." That's one of my favorite quotes and it's memorized.
I guess the wisdom of other people has been a source of strength for me. And also just I guess it's hearing about how other people deal with adversity, because we all have it and the wisdom of community members of mine but also of people who've given speeches or TED talks or things like that. Because everybody has a story to tell. And I'm only 18; finally now in three days, older than 18, but everybody has a story, everybody has wisdom to give to the world. So yeah, I think in terms of looking introspectively but also looking outwards.
Rish: We have a couple of comments more coming in from the web and I'd like to share those with you. This is coming in from one of our participants Mish: “Compassion. Showing kindness. Caring and a willingness to help others helps heal the giver as well as the receiver. I found this to be true for myself when in the hospital for surgery. So I am someone with a similar experience. There was a lot of mutual compassion going on there and it so blessed all of us. Love heals.”
Here is another one by David Doane, also from the web. He says, “It is ironic how a physical heart crisis could precipitate more emotional and spiritual heartfulness, and how a near-death experience can enhance life. Congratulations to Grayson for allowing her crisis to enhance her connections with others and to increase gratitude and compassion while fostering healing in herself and others. As for me, I'm becoming aware that becoming more whole is synonymous with becoming more compassionate, and over the years this has facilitated wholeness and healing for others.”
So let me ask you a different question related to some of the comments. Given how important compassion and empathy are, what would you change about the world today? You mentioned there's a lot of pain and suffering. How would you want to engage with the world as you're heading out to college? You've got some choices to make. Where is your greatest passion and area of interest?
Grayson: Yeah, that's a great question, and I'm still developing that answer. I think I've worked a lot with working to fight for equity in early childhood, I guess in children's education and in girls' education specifically, and in dealing with marginalized perspectives in Asheville. I want to work with young children, maybe in places like Camp Good Trouble. There's a power structure in the world that I cannot begin to know all the ins and outs of, since I'm still learning. Hopefully, I will learn more about this as I get older, but I want to work on isolating ways to fight that inequity and inequality. That is one of my passions. I've kind of grown up in privilege, and and there's a lot of this global suffering.
There's a phrase- I think The Small World first made me aware of it. The quote is about the paralysis of enormity. About how a problem can seem so big that people who aren't directly affected by it turn a blind eye and don't face it head-on because it doesn't affect them. I think if we were to to get people who aren't affected by issues interested in helping people, that's the way that things will begin to get done. I think there is a disconnect in people's interactions with each other and the lack of empathy. That's kind of a blanket statement about what I want to do. I'm not sure exactly what I'd like to go into, but I know that there are a ton of organizations out there. I know that the Small World organization does good work. I sort of told her I might like to work with her, but I've also been in contact with or heard about other organizations who are working to find grassroots solutions to problems, big and small. I think it all starts with a motivated group of compassionate people and being part of this generation who has gradually found their voices through social media and through marches and through political activism of teenagers. It's been really really gratifying to be part of that movement. So yeah, it's a work in progress. I'm excited to assess my options.
Rish: Beautiful. Thank you. Just one follow-up on that too. Now as you're talking, the big picture of what I'm getting is you had adversity and you leaned in and it made you open up. What I've noticed is that sometimes a similar very deep adversity can actually close people. So can you reflect on that process and what about it made you open up? What can we learn from that? From leaning into adversity in a way that makes me, for example, open up versus close in? I certainly found times when in the face of adversity, I'll actually go into my own shell or respond in a way that's not healthy or helpful.
Grayson: Yeah, there was definitely some of that in my experience. I've kind of painted a rosy picture around some of the more traumatic parts of my journey. It was not all happy-go-lucky and grace and all the time. I was faced with this condition called post-pericardiotomy syndrome, like I mentioned earlier, and it was originally diagnosed as a complication of surgery. It was actually found, right after I fainted again five days after surgery, after getting up off of the couch for the first time. They had to rush me back into the cardiologist’s office. That moment, that exact moment where my head hit the ground and I kind of crumbled, I was like, they told me this wasn't going to happen again and here I am on the ground. That was just like an understated panic for a little bit. I had just gone through the surgery and the prospect of having it either not work or have to get more surgeries or just have them say, that's all we could do was terrifying.
Little did I know it but that was the start of years of this post-pericardiotomy syndrome. Basically, doctors and surgeons who have worked with my cardiac issues have seen instances of it, once after surgery. It’s just kind of an inflammatory response to having my chest cut open, but I kept having it more and again and again and again and again. My doctors would treat it with several medicines and there was a point I was taking 25 pills a day, and 12 Advils a day to control pain. It was demoralizing a little bit, to depend on this medicine, to have a quality of life that wasn't even near the caliber of what I was used to. I was cut off from my school community and had to watch my friends go on class trips and then the class formals. I missed even just going to math class!
At that point, I just wanted to be back in the classroom. I really, really like to learn and have explored that especially in the past four years. But yeah, there were times when it was really frustrating as a 13 year old girl. I wasn't living a quote-unquote normal life and and looking back I'm so grateful for every experience I had. My recovery journey was actually pretty smooth in terms of open heart surgery recovery. Having that perspective of being in a hospital with children who are dealing with sicknesses --unimaginable sicknesses-- sicknesses that I can't even imagine. Even after going through this, there are several kids in my hall who were dealing with cancer and things like that.
So I think being able to take a step back from your suffering is helpful; part of that was journaling. It helped me in taking a step back and realizing the perspective of being in contact with people who were dealing with other things. It showed me how it really was up to me, and me alone, to dictate how my recovery was going to go. I'm so glad that it was me who was going through that and not my brothers. I have two younger brothers and actually my disease is handed down generationally, so they had to be tested right after me. That was a terrifying part of the experience too, because it just was nice for me to be able to deal with how I wanted people to see me dealing with surgery. I think it was really hard for my parents because they weren't really in control. Here's their firstborn child, lying in a hospital.
I think there was a little bit of give and take in terms of recoiling into yourself and not. I found that the times where I did reach out to people or I did take it upon myself to heal through art or to heal through writing or to heal through sitting outside and enjoying the sunshine were the times that I felt healing happen. Going to Nepal, we hiked up into the into the Himalayan Foothills, about 15,000 feet in the air. And standing on top of that mountain, I felt this like this balance in my body and in my mind, and for the first time, in a long time, my heart felt heeled. And so, you know isolating those times and realizing that I was healing by extending myself outward really inspired me to keep doing that. And here I am today and fingers crossed for health for the long term. But everything's going okay right now.
Rish: I'd say yeah, fingers crossed indeed. Thank you for sharing that. I think we have a shy group of listeners today. But again just a reminder star six if you wanted to ask a question. I think Bela has a question for you now, then you can come back to me.
Bela: Yeah. So your mom is an important person in your life, and she was with you the day that you received your diagnosis. And you know, you describe how both of you just collapsed on the floor after you had after you left the office. Can you talk about your relationship with your mom and if it changed since the surgery, since the diagnosis,if it's grown? Can you share about that relationship?
Grayson: Yeah, definitely. I'm really close with my parents and always have been, but you know, at this point, when surgery happened, it kind of turned into this transcendent relationship of here these people who have dedicated their lives to improving mine and to cultivating who I am as a person. And you know, not only in my manners and all that but just in my essence, in my soul. And, I think for them it was the most terrifying thing they could imagine to be completely powerless in their daughter's medical history. And I've seen pictures of them, at my bedside when I was under anesthesia and they still bring tears to my eyes, now looking at them. Just worried beyond measure because you know a part of them is on, a part of them was on that operating table with me.
I've gotten closer to both of them, especially my mom in dealing, you know. They've taken me to my cardiologist appointments and you know to follow-up appointments and have kind of been with me every step of the way.
And with my brothers as well. You know, I've been very busy in high school and haven't been home a whole lot. But when we're together, it's always a constant reminder of we went through this experience together. We saw what the possibility of not having each other in our lives was like and sometimes people shy away, when they realize the weight of a right relationship. And you know, losing that terrifies them so much, that they kind of close themselves off from having that experience.
And you know, my my English teacher keeps telling, me telling all the seniors, as we are set to graduate in about a month and a half, that some people tend to close themselves off in the last little bit of high school, because the pain of losing their friends is too much. But I think we've all kind of leaned into enjoying the presence of each other and the sloth of the last stretch.
But, yeah, I just I watched my parents deal with my history, my medical history and watch their strength in dealing with that. And they've been nothing but supportive and positive to me. And understanding that that I've had ups and downs, and they've been really supportive in supporting my passions. And I know that me going to Nepal was probably the most terrifying thing they could ever think about, right after surgery, a few years after surgery, being 8,000 miles away, with 0 cell phone contact with their daughter. But they have really supported me in all of those ways and it's going to be really hard to leave them next year.
But yeah, I think so. We've had those transcendent moments, you know that moment with my mom on the ground. And you know, just feeling this unrestrained love that surgery brought to our family has been really, really powerful. And I'm beyond lucky to have such inspiring and positive people and supportive people in my life.
Bela: Yeah, it's incredible that your parents let you go to Nepal.
Grayson: I think they knew it was going to be a transformative experience. And it was!
Bela: Grayson, so I also, in my work, work with a lot of young people, young leaders from around the world. And that's something that I hear a lot is just a feeling of loneliness and isolation and overwhelm amongst a lot of people, even in the midst of all of the heightened connection through social media.
And you know this kind of elaborates on the question Rish asked earlier about opening up versus closing inwards, when you're faced with adversity. But what would you share with other people, with your peers, with other young people out there, that are feeling really lonely, feeling isolated, feeling like they don't have community to hold them? How could they come out of that?
Grayson: Yeah, well yeah like you said, I did feel isolated for a long time. And physically, you know when I was not in school and my friends were having experiences that I wasn't having, when I was seeing it on bed rest. And it is isolating to not feel a part, or to not feel like a part of the community. And I found that I've had I had a hard time asking for help, I think from people, whether that was, you know, telling my doctor the full extent of my medical issues. I would tend to brush off the post-pericardiotomy syndrome, as just another infusion of fluid and it's fine and it'll be fine. But in reality, I really had to tell people what was wrong.
And so I think asking for help, it's a skill that people should cultivate. But, feeling isolated in my experience, how I learned to break out of that was extending my presence to people who I thought might be isolated. And I think Rish said something about, or like one of the comments said something about how giving, how service to others also aids yourself, because it cultivating that respect for somebody else. And reaching out to people and they having, their gratitude in realizing that somebody cares enough to reach out for them made them open up to me. That happened, you know a few times when I would, you know, write a letter to somebody or text them or pull them aside. And so yeah, I think it's reaching beyond that feeling of loneliness -- it is really powerful. And searching for people to make that connection with is really important.
But yeah, I think even in the age of social media where people are are connected online, social media can be really detrimental in some aspects, because it seems like people are posting status updates or pictures, and it's easy to feel left out of things. And that's why I tried to kind of go beyond that and formulate meaningful connection face-to-face with people.
Bela: Asking for help is a skill and certainly it is. Thank you, so much Grayson for sharing this generously and vulnerably and I will turn it back to Rish
Rish: Yeah, thank you again. It's actually something you said, that reminds me of a recent conversation, I had with a friend who's also struggling with a diagnosis of her mom. And she said it wasn't till I kind of grappled with that, that I realized how much more I could have done for others, in that situation.
So something about, what you said, like asking for help, but also being available and finding the full ways to be available for people, I think that's really resonant.
Maybe one final question. You know, you've talked about a lot of difficult times, you know, and I'm reminded that catharsis can take so many forms, tears, but also laughter and silliness and finding humour in the moment, and I guess I'm curious about what have been, through all of this, like your moments of lightness, you know, laugh-out-loud moments or anything of that sort, that has helped you, kind of go through your experience as well? Anything that you want to share?
Grayson: Yeah, well there, yeah, as much as I've, you know, gone through bouts of suffering in the past four years, it's also been, I think, the best four years of my life, you know, being in high school and being around a small community of, of really motivated and compassionate and, and, change-minded people, has been really my whole school experience. And there have been you know, several times when I just have had you know, whether I’m deep in a laughing fit with my friends, or you know, having late-night talks with my friends, at summer camp, the summer camp that I've been going to for a long time. Or you know dancing with the Himalayan Hope Home girls in Nepal, or you know, talking with a friend about my surgery experiences at 2 am at Waffle House, so this happened a couple times (laughs).
I just look back at moments like that and am just profoundly grateful for everything that I've gone through and like I said, people always ask me about my scar and if I want to laser it off and I say, no, it's part of me, and it's part of, of my experiences. And I think, the person I am today, is a product of everything I’ve gone through, all of the support I’ve had from people, all the personal growth that surgery is brought me. But also that, just growing up has brought me. And those moments of levity have been, you know, with me throughout this entire experience. And, yeah, I just look back, you know, as I get further and further from surgery, it happened now about four and a half years ago, I guess I forget sometimes about how traumatic and about how painful that experience was. But I'm kind of always reminded, by the experiences I had, and how formative they've been in who I am today. And everything together is who I am now, and I'm really grateful for every experience I've had.
Rish: And Grayson, how can we, as a larger Service Space community, support the work that you're doing, the intention that you're holding of bringing compassion and empathy into the world, doing work with those that who have less. How can, how can this community support that?
Grayson: I think, it starts with promoting little acts of kindness, little letters or little comments to family and friends and acquaintances about their worth and why they mean, why they matter to you. I think volunteering in children's hospitals is something that I have been a benefittor, or the beneficiary of. I mean, like I've benefited from people taking time to volunteer in children's hospitals and volunteering for causes you feel called to volunteer for. Giving, giving of yourself in that way, finding ethical ways to serve is how we're going to change the world, little by little. And yeah, I think it’s just overall extending empathy towards people, let them know, that you care about them and that will inspire them to pay it forward.
Rish: Thank you so much.
Grayson: Thank you,
Rish: And now, when we're getting to the end of our time, I wanted to thank you, very deeply, for this one and a half hour dialogue. I think it's an inspiring journey and what’s inspiring is not just the journey, but also how you come out of it and what you come out as, so what I would like to do next is, spend a minute in collective silence, again in gratitude, for everything that the space is all for and then we'll conclude the call.
Okay! Thank you again very much Grayson for your time and for sharing your journey. Thank you Bela , very much, for moderating the conversation again, This call will be archived and will be available for listening. Thank you everyone.
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