Mattie Stepanek - Child Poet

The following is a transcript of an interview With Mattie Stepanek from Larry King LiveAired February 17, 2003 - 21:00 ET

LARRY KING, HOST: Tonight: that incredible 12-year-old poet and peacemaker Mattie Stepanek is back. Just out of the hospital, still fighting an incurable illness with inspirational hope. And tonight, for the first time, we'll take your phone calls. He'll break your heart and he'll make it soar at the same time. Mattie Stepanek with your calls next on LARRY KING LIVE.

Mattie Stepanek has become an American legend. His new book is just out, "Loving Through Heartsongs," by Mattie J.T. Stepanek. There you see its cover. The forward is by Maya Angelou, a poet in her own rights. And Mattie comes us. He's at the Mayflower Hotel in Washington, D.C. in New York -- in Washington, rather. The Mayflower Hotel in Washington.

What is the weather like? Give us a weather report, Mattie.

MATTIE STEPANEK, 12-YEAR-OLD POET: Well, we had -- as I would phrase it on weather, we had a bunch of big blue things come in and give us a huge snowstorm. So we're big time snowed in.

KING: Big time. And where did you get those braces?

STEPANEK: Braces?

KING: Or suspenders. STEPANEK: Suspenders. Actually, we didn't have any at our hotel. And it is a tradition to wear suspenders every time I'm with you. So someone borrowed them from you. And so I've got real Larry King suspenders on.

KING: You look great, Mattie. How are you feeling?

STEPANEK: I'm feeling good. But I still have blood coming out of my trachea. And that's going to be a problem. So I'm going to go back into the hospital tomorrow morning.

KING: And what are they doing there? Explain that a little.

STEPANEK: At the hospital, basically what's going to happen is they really just need to find out what's wrong. I'm going to be on their ventilator because on my home ventilator it is really tough to keep me at that perfect level of oxygen. But at the hospital they can do it just right, not a little too high or a little too low. So we're going to sit on their vent and pray that everything heals.

KING: Well, we'll all be praying with you, Mattie. First, congratulations. There is going to be an album, a CD of Mattie Stepanek's poems put to music by Bruce Roberts (ph), my friend and producer, and sung by Billy Gilman. How do you feel about that?

STEPANEK: I am very excited. On Saturday, before and during the "Heartsong" gala, I got to spend time with Billy Gilman, and he and I had so much fun talking and listening to some of his music. It is really beautiful music. And I can't wait for it to officially come out. I'm real excited about this.

KING: And Bruce tells me that your words fit perfectly to music. Did you have any idea that you were also a songwriter?

STEPANEK: I had no clue, because when we first started thinking about the idea of music I was a little bit nervous. Because sometimes when people put poetry to music, sometimes it changes the message a little bit. But this is an incredible, incredible project. And I'm very excited about it.

KING: And when is it coming out? Do you know?

STEPANEK: I'm not sure when it's officially coming out, no.

KING: Mattie Stepanek, by the way, if you don't know it -- we should have maybe said this at the beginning -- has a rare form of muscular dystrophy called mitochondrial myopathy. It's sometimes called dosytomia (ph). It means his body is -- his automatic systems don't work, like breathing and heart rate and digestion. They don't work on their own; they need help.He is, by the way, the poster boy for the national -- he's National Goodwill Ambassador for the year 2003 for the Muscular Dystrophy Association. All of his siblings have passed away. Do you fear dying, Mattie?

STEPANEK: I do fear death. But what I actually fear is not dying. I mean, true, it will be sad. But I know that there is a better place waiting for me. I'm actually more afraid of the pain of dying. Like if I'm going to die, like, I'll suffocate. Am I just going to by pure chance die in a car accident? Or will it be just, I can't survive and they let me go? I actually fear more how I'm dying, not when I'm dying. But I don't want to die anytime soon. I've got a lot to do while I'm here and I hope I can do it.

KING: You bet. And you do believe that you will go on to some place?

STEPANEK: Yes. Some place bigger and better than the here and now.

KING: All right. "Loving Through Heartsongs," your newest book, the foreword by -- you must be quite proud to have Maya Angelou write the foreword for you.

STEPANEK: That was very exciting. It is a wonderful foreword, and that was just really, really cool when we heard that Maya Angelou was indeed doing the foreword.

KING: Do you write poems every day? STEPANEK: Yes. Well, almost every day. How my mom describes it is I'm like a volcano. I either do nothing, thinking about when I'm going to do it, or I just burst, spurt out everything.

KING: Boy, you're an incredible kid. We're going to be reading some of these poems, as you know, Mattie. The poems "Loving Through Heartsongs." I want to touch some other bases with you. You're in hospitals a lot.

STEPANEK: Yes.

KING: What don't you like about them?

STEPANEK: The hospital, it is very -- first of all, it is scary just to hear anyone say, "Sorry, we have to go to the hospital." "You have to go to the hospital." It is just -- it is very scary emotionally. And sometimes it hurts, sometimes it doesn't. It depends on what is going on with your body or if they had to do anything. And I get -- also, I'm asked sometimes, "Do you get scared in the hospital?" Yes, I am human. I get scared. I get angry. I just -- sometimes I just say, why bother? OK, why bother? And then I'll start thinking, you know, I'll say, "I am so sorry. Why did I just do that? I need to stay positive because I am going to get out of the hospital." And I'm going stay out for a while. But at the hospital, one thing that really helps make it a great experience is the doctors and nurses at Children's National Medical Center in Washington, D.C., they are just such wonderful people. They're like family. I mean, they talk to you. They have fun with you. They'll laugh at your practical jokes. Everything.

KING: Are you having trouble breathing right now? What is that sound I'm hearing?

STEPANEK: That sound is probably me breathing and my vent breathing as well.

KING: Are you having trouble breathing now?

STEPANEK: No, not right now.

KING: When you get trouble, is it hard for you to speak?

STEPANEK: When -- lately, when I do have trouble breathing, I just, I start sucking for air and I -- then I realize, OK, I really -- I can't breathe right now. And then I stop talking and just sit there doing nothing, taking deep breaths.

KING: Do you panic?

STEPANEK: Sometimes I panic. The first time when I left and the blood started coming out, because the doctors and nurses said, "He's going to have three days to three weeks most probably until the bleeding starts up again," and it happened seven hours later. I just started coughing up the blood and I panicked then. So I'm like, "Oh, no, I can't. I'm not doing this. This is -- we're going home." And we did. We were having a wonderful time being snowed in at the Mayflower with our friends (UNINTELLIGIBLE). But, you know, still, when I'm having trouble breathing, I do panic. But now I'm -- when I'm out of the hospital, I know don't panic unless there is really something to panic about. Like I literally cough up a lung or something.

KING: Yes. Our guest is Mattie Stepanek. We'll take a break and come back. And we will, for the first time -- we've had Mattie I guess two or three times, but we had not taken phone calls. We will take phone calls for Mattie Stepanek tonight, and we will be doing it fairly shortly.

His new book is "Loving Through Heartsongs." And when that album comes out, we'll let you know where you can get it. His next book will be a book of essays. He's going to talk to world leaders. A lot of the arrangements being made by former President Jimmy Carter, one of his heroes. We'll be right back.

(BEGIN VIDEO CLIP)UNIDENTIFIED FEMALE: (UNINTELLIGIBLE) is a challenging patient, because most ICU patients are so sick that we need to make sure they're not aware of their environment. We give them medicines to keep them calm and quiet and pain free. And now we have this kid who is equally as sick, but talking to us, joking with us. So it does present a difference of therapeutic options that we have with Mattie. And we're also dealing with an adolescent male. So that has its own challenges. You know medicine is not an exact science. It is part art, it is part science. And the patient is a willing player in the whole healing process. And Mattie is just a determined, positive child. He's just a special guy. He's a special guy. He's a normal kid with a very bad illness. He's a normal kid. (END VIDEO CLIP)(COMMERCIAL BREAK)

(BEGIN VIDEO CLIP)UNIDENTIFIED MALE: I love your books, Mattie.

STEPANEK: Thank you.

UNIDENTIFIED MALE: So are you ready for tonight?

STEPANEK: Yes.

UNIDENTIFIED MALE: All right. It's going to be a big night.

STEPANEK: Hey, Bill (ph), what's up?

(UNINTELLIGIBLE).UNIDENTIFIED MALE: Good to see you.(UNINTELLIGIBLE)

STEPANEK: I feel like Bill Murray in "Groundhog Day" saying, there are all these big blue things and all these white things and green things coming at us from the North.(END VIDEO CLIP)

KING: That's my man, Mattie Stepanek. I said he was at the Mayflower. In fact, he's at the ABC studios right next to the Mayflower. We had a truck break down and ABC was kind enough to lend us their facilities for which we thank them. Even though we didn't partner with them, we can certainly thank them. And they have made it possible for Mattie to be with us. Mattie's new book, as we said, is "Loving Through Heartsongs." The foreword by Maya Angelou. I always call her Maya Angelou, and she likes being called Maya. By the way, here is one of the poems from the book. We'll be going to your calls in a little while

-- "Making Wishes." "The best time to make a wish is when you throw a penny in the fountain. The best time to make a wish is when you see the first star. The best time to make a wish is when you blow out the candles on your cake. And the very best time to make a wish is when you have a special prayer in your heart.

"Do your poems just come to you?

STEPANEK: Usually, yes. I just think of them and then I'm like, mom, quick, write this down so I don't forget it. Or if I see something or hear something that is like, wow, I need to think on that. Usually, yes.

KING: You help us think about a lot of things, and most people are thinking now about war with Iraq and about security at home and our own defenses. What's that?

STEPANEK: Oh, that's just my ventilator beeping. Sorry about that.

KING: No, that's OK. We're interested in everything that happens to you, Mattie. Your ventilator beeps.

STEPANEK: I really don't know why that happened. Sometimes when it sits and hasn't beeped at me in a while it will just beep six or eight times to say, hey, I'm still awake back here.

KING: Are you worried about war?

STEPANEK: I am -- as a child, I am very scared that the decision will be to go to war with Iraq. War is wrong. I mean, it will destroy so many innocent lives. And, you know, if we spent as much time generating as much energy as we do advocating war into advocating peace instead of war, the world would be such a better place. Because, I mean, people are just saying war, war, war. If we instead said, peace, peace peace, you know, there would be peace. And, you know -- and war has changed. We've gone from battlefields to backyards. And we've gone from arrows to anthrax. It is really, really sad the way the world is today, especially with so many people saying they want to go to war. Why? What does war justify? What does war answer?

KING: But what do you do about bad people?

STEPANEK: You pray and you talk to them. Wars should be fought with words, not bombs, not weapons. And calm words. I think that wars should be fought over a chessboard and a cup of something to drink. I mean, I really think if we just sat there talking about why we should choose peace instead of why we should go to war, or why war would be good for our country, you know it would really work out.

KING: Do you fear terrorists and strikes? And, hey, we had it hit our own backyard.

STEPANEK: I am so scared of that. I mean, we had this night where we had the World Trade Center, we had even terrorist attacks in Washington, D.C. Where next? And why next? Why does there have to be a next?

KING: Do you got any answers for the why?

STEPANEK: There shouldn't be. You know, why next, why should there be a war next, there really is no answer to that. The answer is in our actions, our words, what we choose to do. If we choose to do the wrong thing and just say, we have a big bomb, let's drop it, that would do nothing. And it would hurt so many people. You know?

KING: Yes. Mattie, we'll be right back with you and we'll start to include your phone calls.

Here is another Mattie poem called "Future for Life."

"War and hatred, conflict and struggle, pain and strife between countries within countries, between groups within groups, between individuals within individuals, never past, always present. Is there a future? We know but we do not understand. We realize but we do not learn from lessons. We have wisdom but we do not work with universal effort to change what was, what is, what cannot continue to be if we hope for peace, for harmony, for a future, for life."

As we go break, here is Mattie enjoying one of his respites, a video game. We'll be back with your phone calls. (COMMERCIAL BREAK)

KING: The heartsongs of Mattie Stepanek. He's still home schooled, studying this year, British Literature, Algebra II, Biology, Speech, Spanish II, World History, Composition and SAT vocabulary. He once said that a specialist told him that he is hanging on the edge of a cliff with one foot hanging over and the other foot on a banana peel. But he keeps coming on. Let's go some calls for Mattie Stepanek. We haven't done this before. It's your chance to talk to an extraordinary human being. Chester, Pennsylvania, hello.

CALLER: Hi, Larry. Hi, Mattie. Mattie, I'm 22 and I also have the mitochondrial disease. And I'm one of eight kids and all of us have it. And I was wondering if -- I had two questions for you. One is, if you're involved in the United Mitochondrial Disease Foundation? And my second question for you is, I know frequently it is hard to find sort of friends socially and what not who understand what it is like to have such an extreme illness. And I was wondering if you openly talk to or have any other friends that you've made with mitochondrial disease?

KING: Thank you. Two good questions.

STEPANEK: Well the answer to the first question, I am really largely involved with the Muscular Dystrophy Association. But I think that's really the big charity that I do. And the answer to your second question, how I made other friends with muscular dystrophy? Was that it?

KING: Yes, friends with it?

STEPANEK: Actually, yes. You know both kids and adults. Every year, once a year, in Maryland, I go for a week and overnight camp with about 50 to 60 kids with muscular dystrophy, all ages, seven to 21. And it is really fun. I have some great friends there and wonderful counselors. I enjoy having (UNINTELLIGIBLE); I can't wait to see him again. And it is a lot of fun. And, yes, I do have other friends with all kinds of muscular dystrophy.

KING: Toronto, Canada, for Mattie Stepanek, hello?

CALLER: Hi, Mattie. I just want to say I think you're an amazing kid. I myself, I'm dying of cancer. And sometimes the days seem darker than other days. So how do you stay so positive?

STEPANEK: You know, I agree with you on that. Sometimes when I'm sitting in the hospital, or even at home and you're having a hard time breathing, minutes, seconds seem to drag on like hours. And you know it's really tough to stay positive. I mean, sometimes, like I said earlier in the show, sometimes I say, why me? And sometimes I even say, why am I even doing this? But, you know, it is important not to give up. You know, if you give up, you're basically -- there is nothing to live for, or at least that's the way you're seeing it. Sure, I mean, you can crawl into the corner and say, I give up on this. Or you can go out and say, I don't care if I have one hour or one millennia to live, I'm going to live it to the fullest. I'm going celebrate, before, during and after storms with all my friends. And I just stay positive by praying and thinking and talking with friends and family, especially my mom. She's a big support.

KING: Mountain View, Arkansas, for Mattie Stepanek, hello?

CALLER: Hello, peacemaker.

STEPANEK: Hello.

CALLER: I hope that you're doing well and I have all your books. And also, I was wondering if you have ever considered making tapes of your thoughts and writings because, for me, anyway, your voice has a soothing and calming effect.

KING: Good point.

STEPANEK: Thank you. I do have -- for my five books of poetry, I do have audiotapes out, yes.

KING: And they're available wherever audiotapes are sold?

STEPANEK: Yes, probably. Plus bookstores.

KING: Bookstores, yes. But they are available?

STEPANEK: Yes.

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