Thankful for Being Alive with Chronic Illness

Mia Moreno is the "Heart to Heart with Michael" Guest this week. She talks about her gratitude for her life, despite suffering from chronic illness.

Mia and Michael investigate how her chronic illness has affected other relationships in her life. Tune in to hear her expound on how her faith has helped her and why she believes it's so important for people living with chronic illness to talk about it with their loved ones.

Transcript

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spk_1:   0:02
Welcome to heart are with Michael Future in your host Michael. Even our program is designed to empower the bereaved community with information and stories from those who have suffered the most terrible loss. Michael, himself a bereaved father, will be meeting with people from around the world to share and to draw hope from their experiences. And now here is Michael even welcome to

spk_3:   0:29
the 11th episode of the first season of Heart to Heart with Michael, a program for the bereaved community. Our purpose is to empower our community with resource is support and advocacy information. Today's show is thankful for being alive with chronic illness. Here, with us today to discuss this topic is our guest, Mu Marino. Mia was born with pulmonary atresia. She had the fun 10 procedure, was on ECMO, suffered kidney failure and received her first pacemaker. At 15 years old, Mia is currently in congestive heart failure. Living with chronic illness, Mia has been forced to face questions about her own end of life. What costs what she incur with ailing health, or what are her wishes for her final services. However, she believes life is to be celebrated for the joys and not mourn for the struggles. Mia finds purpose in helping to educate others about CHD. While her family marvels at how she handles the obstacles that have come her way, Me is glad to be able to stay strong for them and to participate in her own care. She hopes she can help the CHD community with her story and inspire others with her positive attitude. Me a welcome to the program.

spk_0:   1:33
Hi, Michael.

spk_3:   1:35
Please tell us about your condition and what has been like growing up with a chronic illness.

spk_0:   1:38
So I have pulmonary atresia. Um, my first surgery was three days old. Um, it's been a little rough because the first time I remember dealing with it by myself was at 15. Because I don't remember anything before that. Thank God. Um, it's been a little rough.

spk_3:   2:01
Why do you Why do you think you don't remember anything before 15 just because of trauma? Yeah. Are there other people in your family who are dealing with chronic illness who's been your guide and and how do you develop your philosophy of life

spk_0:   2:13
in my family? Like it's just been me. I mean, everybody's had their struggles like they beat us and stuff that had to maintain but nothing

spk_3:   2:25
but my ass is differently. When my daughter was born, she was the third child. And so we had other Children are doing on the house who were fine growing up ill, coming up with a chronic illness. Has that affected the rest of your family while you were growing up?

spk_0:   2:41
Well, it's just me and my sister. She's older. So on to me, she got the short end of the stick when it came to attention. Really? Yeah. I feel that way because there was a lot of times where, you know, she had things going on. And, you know, my family was a big help and taking care of us because I have 10 aunts and uncles. So we would go, you know, stay with them, were visit with them. Well, I went to the doctor. My parents went with me. No, she had a lot of time with our cousins when she was younger.

spk_3:   3:20
Do you feel that? You ever resented that?

spk_0:   3:23
Mm. When I was younger. Yeah. Now it's more like a we got to take care of this. We gotta stick together, cause it's just me and you.

spk_3:   3:33
That's very interesting, because I find that my Children now are as adults, having been through those years of taking care of the youngest, um, as adults, their first. Well, they're very, very close friends. And secondly, there are some of those marvelous adults I've ever seen. Do you Do you feel that your sister is out? Is is a better person in some sense for having grown up with you?

spk_0:   3:54
Yes, he is. She you know, she had come out of her way for me. She would do anything for me. She go to bat for me, she she would do whatever she had to, you know, just like I'm one of her kids. She would she would help and take care of me.

spk_3:   4:15
I find that happens often when we were taking care of our youngest are older Children, which were only you know, a year and 1/2 and three years older than her we had to grow them up faster. And they had to be bigger sooner in order to help take care of the girl who was developing and growing and things that I could no longer take care of. My daughter had to do for her. And, uh, I think the result of that is that today as young adults, there's some of the most marvelous adults I've ever seen. And I think us I think it's true also, that the family is somehow strengthened by this sort of adversity. Would that be your experience?

spk_0:   4:52
Yes, very much. So.

spk_3:   4:54
Can you give me an example? Something that may be your sister? Did you?

spk_0:   5:00
Uh oh. My vein popped. Why was at home and I was by myself. And because I'm on blood thinners and, you know, different bags. My I was bleeding really badly, and she girlie lives down the road, and I called her a worry. Well, I'm at home. You need to get here. And she was there 10 minutes flat. And she's like, Okay, wait, let's wrap it. Lets go. Were underway.

spk_3:   5:29
Well, because this is obviously what you're in Children. When was this?

spk_0:   5:32
Um, it was probably the first time I moved out of my parent's house.

spk_3:   5:38
Wow. So you stayed close, but you were out. I get that. Yeah. What was it like? You know, a typical day. You know, you're you're a young teenager. you're living at home, you have your issues. Your sister wants to get on with her life, I would assume, and yet she's somehow helping you. Your parents, I would imagine, or all around you. What's it? They like their

spk_0:   5:58
keeping up with doctor appointments trying to keep up with my sister, you know, because by this time she had her kids. So, you know, going to see them do extracurricular activities like softball and ju jitsu. And you don't spending time with them going back to my family's house.

spk_3:   6:19
Were you allowed to do extracurricular activities? That sort of sports and things? No, I wasn't sure

spk_0:   6:25
allowed to do with any of that. So when we were younger, we had a dance Lickle tickle group. All of my cousins, my aunts were in charge of it. Um, I was a part of that, but I would only get to do, like, one or two songs, and then the rest of the day, you know, I can't do the rest of it.

spk_3:   6:50
Did you feel though, that there was a new attempt on the part of the family to include you whenever they could?

spk_0:   6:55
Most definitely. Because we would. We would spend summer all summer together. You know, at my aunt's house, we go to her pool, we go bowling, and she had come out of her way, you know, to come to the other, come pick us up to pick up everybody. A large are our family, and we all go. And we'd spend countless days during summer at her home. I know it was It was fun. Have to do that.

spk_3:   7:29
Let me ask you something between all of your family, your older sister, your parents, your aunt, your cousins, obviously a lot of people around you all the time. Is there someone you can point to and say why? This is This is the my role model. This is the person that really stuck with me. This the person really wanted to be with

spk_0:   7:42
C. And when I was growing up, I had my main. I call her the A Cheetah, but her name was Teresa. Um and she never had any kids of home, you know, she was the one who always took care of us. All of our our needs are wants, you know, She try and help us take some of us to school you know, rightness around. So when I was with her, we would goto teach. I would help her teach cataclysm on Saturdays. And then I would stay with her Saturday night. So, like a black church Sunday morning

spk_1:   8:23
and then come home something. So

spk_3:   8:27
she was She was the one really guiding, and she was the one was reserved out there. Phew. OK, we're gonna take a short break, but when we get back, we'll be talking with me about how to get prepared and what's more important about end of life wishes.

spk_4:   8:40
Hi, I'm John Montas of NBC's Hit a Cappella show the sing off in a cappella music. It takes a team to create a sound that many will enjoy. Just like it'll take a team to help my good friend Miles Sweitzer, an H LHs survivor. Let's help Miles fulfill his dream and make a big enough sound to bring awareness to congenital heart disease. Please visit him at Go Fund me dot com backwards slash the miles project Miles with the UAE. Again, that's go fund me dot com The Miles project. This is for miles.

spk_1:   9:10
You are listening to heart to heart with Michael. If you have a question or comment that you would like addressed on our program. Please send an email to Michael, even at Michael at heart to heart with michael dot com. No back to her toe hurt with Michael.

spk_3:   9:26
Welcome back to heart to heart with Michael Today we're talking with me, Marina, about preparing for end of life Me before the break, we were talking about your aunt and how she was important in your life in that, among other things, he would take you to church that was being Catholic affected. Your decision making when preparing for your end of life issues.

spk_0:   9:48
Um, end of life issues. It's affected it greatly, you know, as faras end of life, um, things that have to be done like last rites and garments and colors. And you know, certain things because I'm not married or I'm single are don't have kids. So the things things in that sense get to change when in the life comes because usually it's black. But because I'm not married, I get to choose colors. I get to wear white. So it has been, you know, a lot of changes because I thought over Well, it's just gonna be gloomy. It's just gonna be black, you know they're gonna cry. No. Well, now that I get to change everything about it like colors and and you know, if I want to be cremated or buried or certain music, um, it changes everything.

spk_3:   11:00
Did you find Do you find that there's a certain feeling of empowerment when suddenly you have control over that sort of issue?

spk_0:   11:10
Yeah, it definitely is empowering because, I mean, when I was 15 and I had to deal with it myself, I became very selfish in the sense that I became severely depressed. I was, you know, I wasn't ready for that.

spk_3:   11:34
Is that when you first figured out, really that you know, this is a limited term.

spk_0:   11:41
I was at the point where I was ready to quit, and because of my faith, I'm not allowed to do that. So that was affected me.

spk_3:   12:01
What? I think it's important to be prepared it. And are you in some way thankful that you're old illnesses giving you the opportunity to be prepared?

spk_0:   12:10
I am. I am grateful for my onus because as I get to prepare, you know I get to prepare myself. I get to prepare my family and see Hey, you know, I know it's a sore subject and you really don't want to talk about it, But we got to talk about it and

spk_3:   12:35
have they become more open to talking about

spk_0:   12:37
it? At first, it was like, No, let's not talk about it. It's not gonna happen. You're not. You know, my dad always tells me, you know, Ah, Father is not supposed to bury their child ob supposed to be buried first, and he always tells me that. So at first he was like, No, that's never never gonna happen. I'm going first. Um, so it's to prepare them. At first, it was like, No, we're not talking about it. And now that we're, you know, seen Hey, you know, I'm a heart failure. Things have to change. You know, um, we were talking about transplant, but we're not currently anymore.

spk_3:   13:29
Eyes that are you off the list, or were you never known on the list? But

spk_0:   13:32
I remember on the list start, um, and I got explained to me, You know, there's only a certain amount of transplants they do, and there's a certain amount of people that I need it and it doesn't really balance out.

spk_3:   13:50
That is that is an unfair truth, I think. Yeah, we were, in some sense, lucky because we were on the other side of that equation. When my daughter died, we were able to, um, donate course, not the heart. But we were able to donate a good deal of organs, and we saved maybe four lives that night. So one of the things that, um, that I still think about is the night that we were crying for families were celebrated. Yeah. And over the same or more or less over the same thing. Uh, that was difficult moment for us, but we felt that we were able to turn death into an opportunity for life, and we thought that was really important. So I understand that your parents don't want to talk about it, but I think at some point realities that reality is. And he's a really difficult issues. So how did you get them to eventually come around and discuss it?

spk_0:   14:50
I got to the point where I was like, you know, at 18 I was ready to go to the doctor by myself. So when they all this started happening, I was going to dr by myself, and they were like, No, you know, let's go to the doctor with you. So I was like, Okay, you could come to the doctor with me, so you can hear it because, you know, journalist, you're gonna take my word for it.

spk_3:   15:17
Right?

spk_0:   15:19
Um, so we all went to the doctor, and we have this conversation of, you know, I'm in heart failure. I may need a transplant. That may not happen. Um, and after that, it was more of their eyes were opening to the fact that this could happen. It's a possibility. And I mean, at first, you know, like any parent, they'd be like, they'd be sad, but

spk_3:   15:55
I could imagine that they would be, Yes,

spk_0:   16:00
but they're still, you know, egging me on, not to give up, either.

spk_3:   16:06
Well, that's good. And that's that's what they're supposed to do. But it seems to me that somewhere along the line something that and you're the one who's who's egging them on your the one who's giving them strength. And I really appreciate that because I think what you've done here is you've taken your own situation, and you've changed it in a way that you are somehow empowered by what you have and know that you have to do what you have to dio, and that's not usually the way you see it. I think your father is the Your father sees things the way most people do with you know what's what. It's not right to lose a child. Well, you know what? It's not really. It's not an issue of right or wrong up until, you know, maybe 100 years ago of up until better medications, people, even even in countries as forward is the United States were having 9 10 Children so that a few of them would survive into adulthood. I mean, we've, we've, we've artificially reduced infant mortality and we've made people live longer when we can. And so we've gotten used to this idea that it's not right, but it is the way things happen. I think I think what you've done is you've you've turned the tables a little bit instead of your parents being the ones to sort of pull you over the line and encourage you. I think you're the one who's become strong for them. And I think you've encouraged your parents. And I think that's a tremendous thing for you to do, because it really gives you that kind of strength and power to continue into think about your future as it is and to do what you believe needs to be done. It's the kind of thing that a lot of people are they don't really know they can do until they're

spk_1:   17:44
faced with. But we're

spk_3:   17:47
going to take a hard break. And when we get back, we'll be talking with me about how she copes with her chronic illness with such a positive attitude and what advice she may have for others

spk_2:   18:04
forever by the Baby Blue Sound collective. I think what I love so much about this study is that some of the songs were inspired by the patients. Many listeners will understand many of the different songs and what they've been inspired. Our new album will be available on iTunes amazon dot com Spotify. I love the fact that the proceeds from this CD are actually going to help those with congenital heart defects join music home tonight forever.

spk_5:   18:38
Theo Hart with Michael is a presentation of hearts unite Theglobe and is part of the hug Podcast Network Hearts unite The Globe is a non profit organization devoted to providing resource is to the congenital heart defect community to uplift, empower and enrich the lives of our community members. If you would like access to free resource, is pretending to the CHT community. Please visit our website at www congenital heart defects dot com for information about C H D. The hospitals that treat Children with CHD summer camps for CHD survivors and much, much more.

spk_2:   19:19
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spk_1:   19:53
You are listening to heart to heart with Michael. If you or someone you know would like to be a guest on Michael's program, please email him at Michael at heart to heart with michael dot com. Now back to our program Welcome

spk_3:   20:11
back to heart to Heart with Michael, A program for the bereaved. We're here with Mia Marino, who is sharing her thoughts on being thankful for being alive with chronic illness. In this segment, meal will share with us how the laughter in her life has helped her cope with the daily struggle of her survival. I mean, what's the best tool in your arsenal to help you cope with having chronic illness?

spk_0:   20:31
Definitely laughter.

spk_3:   20:34
Tell me about that because we love to hear about that here,

spk_0:   20:37
Um, like my sister, my sister and her kids. You know, they entertain me. They do funny things. They make jokes. It's, you know, the they keep me going. Were you

spk_3:   20:56
ever drift off into the dark humor of places where other people would think they don't want you to go? What do you do? Make jokes about that?

spk_0:   21:02
Yeah,

spk_3:   21:05
Feel free to open up and tell us something that that other people might have thought was inappropriate, but that had you ditches.

spk_0:   21:11
I mean, okay, so on Facebook means right, go around. So there's a mean that's, you know, as a police officer, and he's arresting the heart, and he's like, Oh, it's because you are having cardiac arrest and I'm like, That's funny, E.

spk_3:   21:37
It's okay to make jokes, but hard patients in your house. I like

spk_0:   21:40
that. Wait, don't tell me on like, yes, it ISS

spk_3:   21:47
Do you find freedom in that kind of humor? Do you think it just opens up? If you've been holding back about something else that does a good joke like that just sort of let everything open up?

spk_0:   21:56
Yeah, it definitely does. It's just one of those things that you know. Some people think it's it's bad, but I'm like, you know, it's if you makes you laugh, take it and run with it cause laughter at the end of the day is what's making you happy and just just go with it. You can't, you know, just like life, roll with it, just go. It'll be fine.

spk_3:   22:25
I absolutely agree with that. Um, I have been known to say some of the worst things in the absolute most inopportune moments. I think anybody who works on this program also knows that, Um, but it's one of it. I find it for me. It's a self defense mechanism. I hide behind humor when I'm really nervous about something. But I also find that it opens up not only myself, but the people around me if people are being ginger and walking carefully around me. So it's not to say something that might upset me or maybe say something not say something that would upset me about my daughter. Um, I just go right to it. And once they get there and relax, that could be themselves. Do you find that happens to a lot

spk_0:   23:07
with strangers? I find that they're more conscious of what they say and how it said my family Would you get to a point where you know we're 29 years into this going on 30 there like No, we're not. We're not gonna sugarcoat it. It's fine. That's

spk_2:   23:28
what you'd expect that you'd expect

spk_3:   23:31
that from people who are inside. They sort of get rough around the edges, and they're fine with that. But it's always interesting to watch new people walk into the situation. Welcome to my life.

spk_0:   23:40
Uh, yeah.

spk_3:   23:42
Let me ask you something. The United States Now we're in the holiday season at the beginning of holiday season in America ushers in the holidays with Thanksgiving. So what's your advice to others? To feel a sense of thankfulness or even gratitude? Dare I say? No matter what they're facing right now in their lives, what would you tell people

spk_0:   24:00
right now, going into Thanksgiving season? Just be happy with what you have. I mean, yeah, it gets tough. You know, most of us with chronic illness, you know, got medical bills, and we're struggling, and it's a lot to deal with that fine. But so it's even for our families that were, you know, even though says patients, yes, it's a lot. But we forget the people around this, you know, better looking inward that are seeing you know, what we're going through. If you know, they're seeing that we can do it. And we're striving.

spk_3:   24:45
Do people really have an idea that what you're going through? Do they really understand it? Do you think

spk_0:   24:51
my my family, I try to be as open as I can with, um I Every time there's a doctor appointment or something happened or end up in the hospital, I definitely message them and keep them informed. Um, I try keeping them everybody up to date.

spk_3:   25:14
Well, but I guess I'm talking about this two levels up from that. There's your family. And then there's friends and people close to you who know you who know what you're going through. They know your situation. Do you think they really understand that? And before you tell me about them when you meet, somebody knew. How does it come into conversation? Hi, my name is me. I have heart disease or just it slowly works in.

spk_0:   25:35
Sometimes it even doesn't come up. I mean I mean, you know, like, I have the scars, but no one actually goes around and says, Hey, you know, what's that from? You know, we'll catch him staring, but sometimes you'll be like, What were you staring at? But it's because I'm not ashamed of it.

spk_4:   25:57
Uh huh.

spk_0:   25:58
These might. My scars are, you know, something? I've dealt with something I've gone through. And if I hadn't considered here and talk to you and say, Hey, this is what I've gone through and I can help you understand it. I'll be as open to you as I can be to let you know. Hey, there's a lot going on.

spk_3:   26:21
Well, most of us, his parents of Children, the heart's desires refer to them as battle scores. And we were was kind of proud of the scars, defined who they were. And that was sort of a, you know, a window to their soul was also a window into their hearts on. We were always very tried to be very poetic about it. But do you think that people near you who have been around you for a long time, you know objectively what it's about Is this something you think you can share? I mean fully. Just Can anybody really get inside your head on that?

spk_0:   26:51
Ah, fully. Yeah. Inside my head. The problem not, um maybe the one person or a couple of people that come close is my sister and my mom, but completely No. I mean, it definitely helps when I go to the doctor and they say, How are you feeling? Yeah. I mean, you know, I can tell him I can express you know how I'm feeling, But I mean people just walking by. I don't think they would completely understand it, like even because they say, Oh, it's Ah, it's an invisible disability You know, people don't understand that it is. It's a hindrance. Sometimes certain things you can't do like anybody else would dio. You know I can't go out and have a drink. I can't go out and I smoke a cigarette. I can't do anything that a regular person or a teenager would have done in high school. You know most of those experience. I've never I will. Let's just say I have never had those experiences because I was always told, you know, because of what is wrong with you because of your condition, you can't do like most camp. Some of them see it has disability, and then some of them think you're full of it.

spk_3:   28:31
No, that's unfortunate. I think the world breaks down and two kinds of people that the people who think you're full of it, you can just leave them alone, ignore them. Some people, some people who try to be sympathetic, may say silly things, but they're trying very hard to empathize, and I think you should keep those people close. And I think that you encourage them every day by being close and by wearing a smile and by being humorous and by being who you are. That's a really nice thing. And with that, I'm sorry, but we're going to have to end this episode of heart to heart with Michael. So again, I want to thank me a merino for sharing with us. Thank you.

spk_0:   29:04
You're welcome.

spk_3:   29:06
We hope her story has brought some hope to you who are listening and please join me or the heart to heart with Michael Team in PAL talk every week following our program. I'll talk with you soon, and until then remember,

spk_1:   29:16
it's OK. Thank you again for joining us. We hope you have gained strength from listening to our program. Heart to Heart with Michael could be heard every Thursday at noon Eastern time. We'll talk again next time when we'll share more stories. If you would like to continue today's discussion, please join us right after the program In the hug podcast chat room on PAL talk