Expressions from the Heart on HeartWire

When a person is born with a broken heart, parents must face a multitude of decisions -- many life-threatening and terrifying. As children age, they themselves become aware of their heart problems and face their own mortality. Many of us in the heart defect community (CHD) have faced the death of loved ones or friends. How does being a member of the CHD community take a toll on its members? What are some ways we can deal with the trauma that we must face? One way is through art therapy or music therapy. Today's show will deal with this topic and will feature Angela Loehr, the founder of HeartWire, International (http://heartwiremyheart.org) and Megan Tones.

Thanks to our newest HUG Patron, Ayrton Beatty and long-standing Patrons: Laura Redfern, Pam Davis, Michael Liben, Nancy Jensen, Alicia Lynch, Deena Barber, Carlee McGuire, Carter & Faye Mayberry, and Frank Jaworski. We appreciate you!

Transcript

spk_1:   0:03
Welcome to Heart to Heart with Anna, featuring your host Anna Dworsky. Our program is a program designed to empower the CH to York and genital heart defect community. Our program may also help families who have Children who are chronically ill by bringing information and encouragement to you in order to become an advocate for your community. Now here is an edge or ski season. Approached her with a baby is born when conflicts congenital heart defects usually require leave one surgery before their first birthday. There's a certain amount of trauma involved for both the

spk_2:   0:43
baby and appearance regarding this situation. Having a hospitalized sibling also affects brothers and sisters. Operating on the baby's heart is of primary importance little else has done to help families or babies. Until the babies have healed sufficiently from their surgeries to begin the process of rehabilitation or in very young babies, they begin the process of growth in many different ways. Many babies qualified for additional therapies to help them catch up to their peers or to improve their developmental growth. It's not uncommon for babies former complex congenital heart defects to benefit from physical therapy, speech therapy or occupational therapy according to the Hospital for Sick Children's website, there are other kinds of therapies that could benefit babies, Children and even families. Some alternative and complementary therapies include art therapy, aromatherapy healing, touch or therapeutic touch therapy, humor or laughter therapy, massage therapy, music therapy, nutrition therapy, play therapy and yoga. Kate Mu CI has written a beautiful piece entitled The Healing Sound of Music. Incredible Benefits of Music for about dot com for their music therapy section. In This Pea, She describes how music therapy can help even the tiniest babies who are in incubators in the hospital. And she discusses how music can help people with Alzheimer's. Music is healing for people of all ages. She talks about how sometimes miracles occur. Thanks to music. Sometimes people are healed, are given a few moments of relief from pain or are comforted in their passage to the beyond. Sadly, even though there is anecdotal evidence of the benefits of music therapy, only about 15% of American hospitals employ regular music therapy till we know that music can relieve stress in many ways, Kay Beauty writes, the health of the physical body is inextricably hi to our emotional mental and spiritual health. Music is a powerful catalyst for healing because it touches the very core of humanity. Our souls. We could take control of our health and our lives as we enjoy the healing sound of music. Our therapy has also said itself apart as a means of utilizing the creative process and being available to just about anyone. While art therapy can benefit Children, it can also be helpful to adults. According to the art therapy Blawg on the benefits of art therapy, Really, anyone can benefit from art therapy. Art therapy can improve various mental and physical symptoms, including, but not limited to reducing pain, anxiety and tension. It could be beneficial to those who have mental disorders, severe or light emotional abuse, cancer, post traumatic stress disorders, or PTSD, people who are bipolar and a variety of other serious ailments. The beautiful thing about art and music therapy is that they do not have to be done with an actual licensed art or music therapist to receive some benefit. Clearly, working with a specialist will help recipients in many ways they may not have considered will be aware of, but just the act of listening to our producing music or creating something or enjoying art created by someone else is beneficial. Just so. I'm very excited about our show today. Expressions From the Heart on Hotwire International You will learn more about hardwire international from today's guest, Megan Tones in Angela Layer. Megan Turns was born in Australia in 1983. She was originally diagnosed with a large ventricular septal defect, or VSD, which has become complicated by my trabaja prolapse heart failure, an atrial arrhythmias in adulthood. As a child, Megan's favorite hobbies were pets, arts and crafts, reading and video games. Today her work is a researcher takes up much of her time, however, she tried to keep up her hoppy where she can and has written a couple of short stories over the years. Her change in health status has prompted her involvement in adult congenital heart defect support groups, and she hopes to be even more active in CHD as it could be work in the future. Welcome to heart to Heart with Anna Megan.

spk_4:   4:49
Hi, Anna. Thank you so much for inviting me.

spk_2:   4:52
Well, I'm so excited. You are heart to heart with Anna's first Australian guest.

spk_4:   4:58
What an honor

spk_2:   5:00
Well, it's definitely an honor for me. Angela Layer told me that she wanted to have you on the show with her when I suggested that we do the show. And so I said, That sounds fabulous. What can you tell me about your work with Hotwire International?

spk_4:   5:17
Well, first met Angela about four years ago through the adult Congenital Heart Association, and she was the one who actually reached out. To me. We're both in hospital with atrial separation, so they're going through the same kinds of things with their hearts at the time was probably major scary episodes is adults if you like, And we always wanted to work on something for CHD Owen, but I never really got around. Put myself name. Los Angeles started Hot one, and she invited May toe broke about my experiences of dealing with increased complexity in my condition as an adult. Since then, we've been talking a bit more regularly about maybe becoming more involved, which I think is really good, because I have a research background that's a little bit different to Angela's on, and also we're hoping that Hot, Wild want start to have a bit more of an international impact if there's no people from other countries outside of the U. S. Involved?

spk_2:   6:17
Yes, absolutely wonderful. I love the fact that you want to have an international flair. That's when I first knew about Hotwire. It was just plain old Hotwire, but now it's hard wire international. So I love the fact that you're including people from all over the world

spk_4:   6:32
think it's changing and evolving a little on the official.

spk_2:   6:36
It certainly is. So what is it that you do with heart wire?

spk_4:   6:40
Then they just started to become involved with heart. Once I think that hot water fills a really important role, that's not just a bad education and advocacy. I think it's really important that it also showcases the positive aspects off the lives of people was they all remember Angela Very interesting to me, she said. Do what feels authentic to you, and I feel like no one's ever really given me the permission to do that as an adult. So I think that my role with Hotwire and anyone is a contributor is about using ought to create meaning in your loss as a form of expression and therapy and maybe even ultimately is a career for some people on dhe. I feel like the artistic side of hot wire Mike more accessible Web for anybody and not just somebody with C H D. And one thing that we're hoping to do with their extension of heart wires, to maybe become more active in research in the future in terms of looking into the psychosocial aspects of living with congenital heart disease. So I think there's lots of important areas for research in congenital heart disease, but patient experience so very important.

spk_2:   7:57
Oh, I agree 100%. And I love that you're interested in possibly doing some research in the cycle social aspect of being part of the congenital heart defect community, because that's an area that hasn't received much attention from doctors or other researchers, because the most important work that's been done for the last 2030 40 years has been on saving lives. That's so it's mostly regarding different drugs and surgery that are involved, which is great. But now that we do have the many people who are surviving to adulthood, there's so many other issues that we need to investigate, and that's what I love about this radio show that I'm able to talk to people about all different kinds of topics, and I think what you said about being authentic. I love that. I love that Angela told you to be authentic with what you're doing, because I think that that helps people to understand what living with digital heart defect is. And it kind of helps you discover something about yourself as well, don't you think?

spk_4:   8:57
Yeah, absolutely. It was almost like when she said that she was giving me permission to do something for myself, like you said that the research so much focus on the physical health. But mental health is also really important, and I think they are being creative. It's sort of like exercising or working at your imaginative muscle and creativity. There's so much problem solving and cognitive skills that you use in that, and I think that just as important for heart disease and heart failure, working on your physical health, it's not all about diet and exercise. The mental in the psycho social aspect is important. Having a community like Hotwire is an important part of that

spk_2:   9:44
right, and some of our listeners may not really understand what Hardwire International is. So let me tell you a little bit in Megan, you can supplement with what other information we need to know. But I found out about heart wire on Facebook because there is a Facebook page. But there's also a website, and this is a fabulous opportunity for people in a congenital heart defect community to display their artwork, their short stories, their music. And it's a way for all of us to share with one another. Did I get that right, Megan? Yes.

spk_4:   10:17
I think that captures the essence of it pretty well. Er Angela. And the next segment, of course, will probably have quite a bit to add to that being the founder. But I think that you've summed it up very well.

spk_2:   10:28
Well, what have you contributed to Hotwire? Megan?

spk_4:   10:33
Well, I thought I've written a guest blogger about my road. If you like to becoming a more complicated congenital heart disease patients and how it sort of manage that transition. But what I'd really like to sail a little bit about the role that creativity, place and more lost somehow got started beside of that. OK, I was here.

spk_2:   10:58
Absolutely. That sounds perfect.

spk_4:   11:01
I think originally my creative side actually did emerge from my congenital heart disease finally, enough in that I wasn't really a very active child. So my mother would always try and keep me busy with play doh and drawing. And then, as I got a bit older, I've got into making up stories and sort of acting out little stories with my toys. And I could do that for ages. And as I got older, I became more focused on writing. And I've written short stories on often kept a diary and things like that. And before the Internet came about, which I think is just a wonderful invention for people with congenital heart disease. I didn't know anybody who was going through the same sort of health issues as I was when I was a teenager. My sorry bag me the space to win JJ, if you like of that was therapeutic, but I have had one short story published, which I got paid $25 for. So I was pretty excited about

spk_2:   11:58
your opinion writer. That's awesome. Thank

spk_4:   12:02
you. And that story was accepted On the day that I was in surgery six years ago. I thought that that was kind of a good diamond, But I think writing has so many uses people and you write for yourself ultimately. So I don't think you need to be concerned that you're not a good writer. I don't think that's a problem. It'll, because it could be a personal, is keeping a diary to talk about your feelings. Or you could use it in a lot of forms into time and in helping others.

spk_2:   12:32
Absolutely. That's just absolutely wonderful. And that's what I love about hard wire is that it actually afford people the opportunity to share experiences that a very unique part of the population really understands. Not everybody understands some of the things that people in the heart community understands so well. I mean, we can say to one another just a few words, and there's immediate understanding because we've been waiting in the waiting room while a child has been operated on or you're the child yourself. In your case, you and I are actually survivors, and so you two speak a language that not everybody speaks, but through hard wire, which have a chance to express ourselves and open it up to everyone in the heart community and beyond, and I just think that's fabulous. So thank you so much for sharing Megan. We need to go to a quick commercial break. But don't leave yet because we will have Angela Layer coming on next, and she'll be telling us more about what she did in creating Hotwire and what's new for hardware In just a moment.

spk_1:   13:32
Anna Dworsky has written several books to empower the Congenital Heart Defect or C H D Community these books at amazon dot com or at our website www Baby Hearts press dot com. Her best seller is The Heart of a Mother, an anthology of stories written by women for women in the CHD community and as other books, My Brother Needs an Operation, The Heart of a Father and Hypo Plastic Syndrome. A Handbook for Parents will help you understand that you are Hello, Visit baby hearts press dot com to find out more.

spk_2:   14:09
Welcome back to our show. Heart to Heart with Anna. A show for the congenital heart defect community today aren't How big is expressions from the Heart on Heart Wire International and today's Guster Megan Tones in Angela Layer. We just finished talking with Megan about her experience with hard wire, and now we'll turn our attention to Angela Layer. Angela Layer was born in 1982 with hypoplastic right heart syndrome and pulmonary atresia, two parents with a musical background. A born advocate, she served as the poster child for the American Heart Association. At the age of seven, Angela developed a passion for music, particularly singing early on, and she continued to kindle her passion for music and the arts. She also moved into congenital heart defect advocacy work. Specifically, within the last two years, Angela has extended her advocacy work to the congenital heart defect community and reconnected with music by working with a band called the Mendenhall Experiment, which supports and promotes disability awareness. Welcome to Heart

spk_1:   15:05
to

spk_2:   15:05
Heart with Anna Angela Thank you, love. We've already talking about you. And even though I didn't read it as part of your bio, we all know that you're the founder of Hardwire International. So can you tell us why you decided to start her wire?

spk_3:   15:21
Of course, the initial idea for her Wire international was born out of my own personal experiences. Being an artist myself and someone living with complex congenital heart defect and then, a year ago, a close friend. Actually, my first adult CHD friends passed away due to multi system organ failure due to complications from her PhD, which was tetralogy of Hello, and I had the honor of knowing her and being there with her family the night before. She passed away her name of Melinda, and she had an artistic passion, and she was always positive and supportive and uplifting and encouraging of me in my life, despite the fact that she was also struggling. And so ultimately, heart wire was created to allow her spirit, her legacy, to be carried on in response to the grief that I felt for her loss. And I knew that by doing something creative and positive that would touch the lives of the CHD community, it would be the perfect thing to honor her memory.

spk_2:   16:26
Yeah, that does sound like the perfect couple Thio honor Melinda and how awesome that even though she's gone physically from this world, you are allowing her spirit and her creativity to still be a part of your wife and a part of everyone else's life who didn't even get a chance to meet her.

spk_3:   16:47
Absolutely. And that's one of the key things that her family said during the time of her death was her body will go before her spirit does. So I just kind of picked up where she left off. And her gambling has said you. Now she gets to go and do all of these amazing things still through hard wire, through just continuing her legacy.

spk_2:   17:15
Okay, so that leads me to the very next question, which is, if you could tell us about some of your favorite exhibits. Do we have something on the hardware website that Melinda actually created?

spk_3:   17:26
Nothing that she's created. Unfortunately, we haven't gotten their grief is difficult, but we do definitely see her spirit everywhere. There's a section of the website that talks about her legacy in a little bit more detail. So nothing from her, but definitely she infuses into everything that we d'oh the interesting thing about heart. Where is that? We are a Facebook page and the website and kind of

spk_2:   17:52
in the

spk_3:   17:53
period of transitioning people to the website. But we have tons of people that hosts on the Facebook page regularly, and some of my favorites on the Facebook page. Now our music, a gentleman by the name of David Franco is a really amazing guitarist. So he's shared. And then a woman named Anna Taylor also just picked up the ukulele kind of in response. Thio her PhD and not being able to do, you know, things that quote normal people can do. But she picked up a ukulele a couple of years ago, and it was kind of her therapy, and I had the pleasure of hanging out with her, the adult congenital hurt competition and playing music and singing with her and me video of it on Facebook page. Right now, you know, I'm getting it over. Yeah, it was really fun. Thio sit with her and I love too thing and David was there, and we just that in the middle of a hotel lobby and thanks song. We had never hang together. But interestingly enough, later, someone said, people were watching you and people were coming in. Stop, look and see what was happening. And that's really the key and core of the spirit of heart wires.

spk_2:   19:08
The

spk_3:   19:08
community coming together and doing something positive fun, but doesn't make us take our minds off of our chronic condition. But that gives us an avenue to connect with one another on a level other than you have a car and you had open heart way. All have little.

spk_2:   19:27
It's like we have the heart bond. But because of that heart bond were able to enjoy expressing ourselves with each other even more. Don't you feel like you have a sisterhood? Or it's such a deep on that we have with those in the DHD community? If I meet another home, we hardly have to say anything before I feel like we're sisters and friends were even or even with risers. I was lucky enough to meet David Franco, and then he came on my radio show, and I feel like we've been friends forever, and we have it wild.

spk_3:   20:00
Have the same experience with David Franco. We have been talking for about two years on Facebook and coming up to the conference. We knew that both of us, we're gonna be there, and we hung out like we had known each other forever, and we're just cutting up and we had a

spk_2:   20:17
great time. Don't don't

spk_3:   20:19
normally just anybody

spk_2:   20:22
right it does. A woman is easily outside the heart community,

spk_3:   20:26
right? And it was really, like not only the heart connection, if you would, but it's also the music have music in common. So it's getting people to kind of get to those deeper levels. And, as Meghan said in the earlier segment, be authentic to themselves. Do what they

spk_2:   20:44
want, right? And that comes flew in the music and the art. We really get to know people in a different way through their music and their art, right? I cannot believe it, but it is time for us to take another quick commercial break. But don't leave yet because when we come back, we'll have both Angela and Megan in the studio together with me, and we'll find out what's new for Hotwire International in 2015.

spk_1:   21:08
Gorski has spoken around the world at congenital heart defect events, and she is available as a key note or guest speaker. For your event. Go to heart to heart with anna dot com to learn more about booking Anna for your event. You can also find out more about the radio program keep up to date with CHD. Resource is and information about advocacy groups as well as read Ana's Weakly Blawg. Anna wants you to stay well connected and participate in the CHD community. Visit Heart to Heart with anna dot com Today. Heart to Heart

spk_2:   21:41
with Anna Chauffeur The congenital heart defect community. Today we're talking with Megan Turns and Angela Layer about the importance of having music, art and other creative outlets in our lives. And I want to thank them so much for coming on heart to heart with Anna. I am so excited about the opportunity we have through doing the show to let other people know about this wonderful website and how other people can contribute to the website. So welcome back. We're in the last segment, Angela and Megan, and the first question I have Is there something that you wanted to say that we ran out of time in your segment to talk about, and so I'll start with you. Megan, since you were in the first segment,

spk_4:   22:19
I think we've covered quite a bit in that segment that I just really wanted Thio and for people with congenital heart disease and other chronic health problems about the length between physical and psychological health and just how important it is to look after yourself mentally and physically. Doctors. Or we become so focused on the physical, taking our tablets and a walking every day and trying to eat the right sorts of things that way, kind of forget a little bit about what's going on up stays. And I think that any sort of creative outlets like writing or music or drawing really help you thio cope with the stress is that you have in your life and express yourself and just create meaning for yourself. Yes, I just think that that's so important.

spk_2:   23:09
I do, too. I agree with you 100% about the writing and writing therapy is really what got me through having my son and having his heart defect diagnosed. When Alex was diagnosed, he was in congestive heart failure. We have been saying for two months that something was wrong with our son and the doctors kept telling us that we were wrong, that we were being overprotective parents and not to compare her second son to our first. And then by the time he was real distress and they finally believed us, he was, think adjusted heart failure, and the doctors told us he had a 5% chance to survive the surgery. And they recommended we take him home to let him die in our arms, which was not an option for us. And so I'm sure you can imagine how traumatic and experience that was for us. And for me writing is what helped get me through it. And like you said, the Internet has been so awesome. But the Internet was not around 20 years ago, like it is

spk_4:   24:07
so interesting that you say that because that story that you tell about your son is so similar to my parent's story actually found it six days old. But I had a problem, and all of a sudden I was sent to the Specialist Hospital and I got told all sorts of awful things like that. Maybe I had half a heart was only going to live a few days. That creativity is a big part of my parent's life. My mother has a home quote that she smoked while I was in hospital, that she worked on the world.

spk_2:   24:38
You're sure of that? Oh, you'll have to put that up hard wire That would be wonderful. Yeah, and for me, I was able to write about it, and I've actually written several books. And what I found out on the Internet was I wasn't the only one that writing could help. I reached out to lots of other people and in the heart of a mother. What? You're both together. Yeah, there's over 60 women who contributed. I had 50 men contribute to the heart of a father, and several people had told May. Oh, my goodness, If I had known how therapeutic writing was, I couldn't save myself thousands of dollars in income ceiling. So I agree with you have therapeutic writing. Could be, Yeah, that's just amazing. What did your dad, your mom made a quilt. And what did your dad do to help deal with it? But

spk_4:   25:24
Dad was always a musician, so I think that that was a great thing for him to have something that he really enjoyed doing. But what he used to do for me and my younger brother, too, He would tell us stories at night, and I remember he would sit in my hospital room and it would be all dark. And then just be the machines around us, and he would just sit there and tell me stories until I fell asleep. I actually have a lot of good memories in hospital. When I was a little kid with my parents being there and doing puzzles were telling me stories. It really helped me a lot then and maybe that's that's also one. I'm doing more with stories now, but a little let Manjula talk. Well,

spk_2:   26:03
that's right. Now it's Angela turned. I know because we're almost out of time. Angela. We only have a minute or two left. Is there something that you would like to add to the conversation? Well,

spk_3:   26:12
I'll add a little off of what Megan has said, one of the key and courting that I've always said with Hotwire International. Just getting it started is that we want Thio look at you as a person for and then as a patient and then as a sibling. We want to highlight your passion for life and your experience. Whereas other organizations are very good at providing the physical support of medical information. We want to kind of be the answer to that and see you as a whole person because I think a lot of the time people with PhD even extending to friends and family you're kind of looked at as a medical experiment, if you will, and not as a person. And so kind of taking back yourself. Yeah, absolutely. Taking back yourself, expressing yourself through what you're actually passionate about instead of saying my name is Angela. I have a PH. D. And this is how I work my life. Support my Ph. D. It would be lovely if the language could change to. My name is Angela and I'm an artist and I happen to have VD, and that's part of my life.

spk_2:   27:32
In 2015. It looks like one of the things that you're really looking forward. Thio is moving from just being on Facebook to putting more information on the website and my right,

spk_3:   27:42
right? Exactly. You're right on target. Yeah, we're looking for that. And more contributions and expanding our community is love, explains the possible research opportunities and connecting with other community partners. They think there's a great value and working with other organizations, other people in the community who are also doing this type of work or different work so that we can promote and lift each other up.

spk_2:   28:10
Great. Give us the website. People can go to

spk_3:   28:13
its heart wire my heart dot or GE It's hard wire international on the Facebook. Now you can search under Hardware International or on Facebook on the website. You can become a user by going to the become a hardwire users have, and we'll get back to you within 48 hours with log in information so that you can start posting your own passions and sharing your lives with us.

spk_2:   28:38
I just love this. Thank you so much. Megan and Angela for coming on the show and sharing hardwire with us. And I look forward to finding out later on who else is going to be on your website? I'm wondering. See Megan's mom Quilt. So I hope she takes a picture of that. There, you

spk_4:   29:00
get a little off to take a picture?

spk_2:   29:04
Absolutely. That would be a beautiful tribute to you as a little girl and what your mom went through and how she was able to use art to help her through that difficult time. I think that's a great way for us to end the show This does conclude this episode of heart to heart with Ana. We will have a link hardwire heart to heart with Anna website as well. Thank you for listening today. Come back again next week on Tuesday at noon Eastern time. Until then, please find out like a phone Facebook. Check out our website heart to heart with Deanna dot com and our cafe press boutiques. Follow our radio show. And remember, my friends, you are not alone.

spk_0:   29:39
Thank

spk_1:   29:44
you again for joining us this week. We hope you've been inspired and empowered to become an advocate for the congenital heart defect community. Heart to heart With Anna with your host Anna Gorsky can be heard every Tuesday at 12 noon Eastern time. We'll talk again next week.