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CNN Larry King Live
Interview With Mattie Stepanek
Aired February 17, 2003 - 21:00 ET
THIS IS A RUSH TRANSCRIPT. THIS COPY MAY NOT BE IN ITS FINAL FORM AND MAY BE UPDATED.
THIS IS A RUSH TRANSCRIPT. THIS COPY MAY NOT BE IN ITS FINAL FORM AND MAY BE UPDATED.
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.
KING: We will take a break and come back with more phone calls for Mattie Stepanek on this edition of LARRY KING LIVE. Tomorrow night, senators McCain, Feinstein and others will join us to discuss, you know what. Don't go away.
(COMMERCIAL BREAK)
(BEGIN VIDEO CLIP)
UNIDENTIFIED FEMALE: Do you like "The Lord of the Rings?"
STEPANEK: I love the movies, the books. They're all great. My favorite character, without question, is Gandalf. (BEGIN VIDEO CLIP, "THE LORD OF THE RINGS: THE FELLOWSHIP OF THE RING")
IAN MCKELLEN, ACTOR: You shall not pass!
(END VIDEO CLIP)
STEPANEK: He's just awesome.
My second favorite, I like Sam.
(BEGIN VIDEO CLIP, "THE LORD OF THE RINGS: THE FELLOWSHIP OF THE RING")
SEAN ASTIN, ACTOR: I made a promise, Mr. Frodo, a promise. "Don't you leave him, Samwise Gamgee."
(END VIDEO CLIP)
STEPANEK: Favorite bad guy is, even though the ring -- the Balrog.
UNIDENTIFIED FEMALE: The Balrog?
(BEGIN VIDEO CLIP, "THE LORD OF THE RINGS: THE FELLOWSHIP OF THE RING")
MCKELLEN: Dark fire will not avail you, flame of Udun!
(END VIDEO CLIP)
STEPANEK: I've seen "Two Towers" four, but I want to see it six. And I want to see "Return of the King" the most. I want to see "Return of the King" so bad.
(END VIDEO CLIP)
KING: We're back with Mattie Stepanek.
Why do you love the "Lord of the Rings" so much?
STEPANEK: It is really -- "Lord of the Rings" is an amazing fantasy novel. Just reading it, it is one of those books that just so easily takes you in and just puts you in this other world.
KING: You like the movies as much as the books?
STEPANEK: I do. They are doing an amazing job with the movies.
KING: Speaking of amazing and "Loving Through Heartsongs," which is -- there's also going to be an album coming with music. We've discussed that. Mattie does his own drawings that are featured throughout this book. And I might say, they're near Grandma Moses- quality brilliant.
Have you always been able to draw? STEPANEK: The pictures in my book are all finger-paints. And I have been doing that for a long time, since I started doing these arts.
But drawing with a pencil, I can't -- really, it is tough -- for me to picture something in my mind, that's easy. Drawing it isn't as easy, though, but I can copy a lot of stuff, also.
KING: All right, Mattie, let's go back to the phone calls.
Rockaway Beach, Missouri, hello.
CALLER: Hi, Mattie.
STEPANEK: Hello.
CALLER: I think you a great person for other kids to look at. And my question is, what keeps you going?
STEPANEK: What keeps me going?
There are a bunch of great figures in my life. And one of the things is friends, friends and family, especially my mom. And, I mean, it is always good to have someone that you lean on, a hug, say, hey, how are you doing? And they answer back, I'm doing OK, and you?
And my mom, like I said, is a huge thing that keeps me going. And probably the biggest thing is God. I would not have lasted a minute, literally a minute, on this earth without God and angels by my side, because I was born. And right as I was born, I went into a respiratory arrest. So, big things that keep me going are friends and family, God. And another thing is looking forward to what's going to happen tomorrow.
KING: Rome, Georgia, for Mattie Stepanek, hello.
CALLER: Mattie, you're such an inspiration.
STEPANEK: Thank you.
CALLER: You're very welcome.
And the question I have is, with your age, with your infinite wisdom being way beyond your age, year-wise, what words of comfort and advice would you offer to a family member in her early 30s who suddenly became paralyzed last year?
STEPANEK: Suddenly became -- you know, keep hoping. No one can ever give up their hope. You're basically giving up life and waiting to be taken, waiting to die, and saying: No, that's it. I'm not doing this.
Just because something happens -- it's, like, I remember. I didn't always have this trach. I had it when I was a little baby. When I got back in -- I mean, I got it taken out. I'm sorry. And it was the best -- one of the best periods of life. I could -- I learned how to do flips off the diving. I got a black belt in martial arts, things I could never do attached to a trach.
And then it came back in. And even though, sure, I can't flip around anymore, I keep looking forward to every day, doing something with my friends. And always look towards the sunrise. Don't look back. Remember the past. Don't dwell on it. Look towards the future, but don't count on it. And always enjoy every single second of the present.
KING: Santa Cruz, California, for Mattie Stepanek. The new book is "Loving Through Heartsongs."
Hello.
STEPANEK: Hello.
CALLER: Hello.
I pray for you and your mother every night.
STEPANEK: Thank you.
CALLER: And I have two questions. What is your favorite subject in school? And is that doggone sore you had on the back of your head healing?
STEPANEK: Well, to your first question, in my schoolwork, my favorite subject is probably my British literature and my world history. I also enjoy my vocabulary. And to give you an honest answer, my least favorite subject is biology.
And, for the second question, is that doggone sore on the back of my head gone, it is so close. It's been there for about two years now. And it is really -- it is really coming so close. I mean, we're just praying and hoping and trying to give it the best medical care we can. And it is so close to healing. But I mean, we still need lots of prayers. And the sore will go away. And, hopefully, whatever is going on in my trachea will also go away.
KING: You do karate, huh?
STEPANEK: I used to.
Still, every day, I stretch. I meditate. But I used to love doing my martial arts. It was just so much fun. And I loved to do my staff routine, which is -- some people call it a bow.
KING: How long can you come out of the chair for?
STEPANEK: I can still stand a little bit. But right now, I'm really trying to limit my activity, because moving around too much might move my trachea around too much. I stand up to reach things, to transfer into another chair or a bed or to use the bathroom, just little things.
KING: Tampa, Florida, for Mattie Stepanek, hello.
CALLER: Yes, Larry.
My question for Mattie is, when you go to sleep at night and you dream, do you see yourself with all the machines that have to help keep you alive or do you see yourself before then, like when you were doing the karate, as just a regular boy just running around?
KING: Yes, do you fly?
STEPANEK: In my dreams, across the years and even now, I do a lot of things.
Sometimes I'm with the equipment. And sometimes I'm without. I'm just doing whatever. One night, I was dreaming that I was on the journey with the Fellowship of the Ring. And the next night, I was dreaming that I was stuck at the hospital. And sometimes I dream I'm flying. And sometimes I dream I'm falling.
It is really luck of the draw when I go to sleep. I usually dream good, dream bad, or just close my eyes and then, when I open them, it is morning. But sometimes I see myself in the chair. Sometimes I see out of the chair.
KING: Ceres, California, hello.
CALLER: Hi, Mattie and Larry.
KING: Hi.
CALLER: First of all, I'd like to thank Mattie for the heartsongs he's brought into my heart and my family.
My question -- I have two, actually -- is, during your darkest times medically, Mattie, do you come up with some of your most heartfelt heartsongs?
STEPANEK: Sometimes, when I'm really having a hard time medically, I will pray and I will think. But, usually, I just pray straight to God and St. Jude Thaddeus, St. Rita and Blessed Brother Andre for just a miracle: Please help me.
And sometimes I do think about my heartsongs. I think about that a lot, yes.
KING: We'll take a break and be back with more phone calls for Mattie Stepanek.
Don't go away.
(COMMERCIAL BREAK)
UNIDENTIFIED FEMALE: Is there an up and a down to this?
STEPANEK: You've gone from mom to mom. Do you know how to do this?
UNIDENTIFIED FEMALE: No. STEPANEK: You can make a flash
(CROSSTALK)
UNIDENTIFIED FEMALE: OK, can you just pretend like I got it on, because I can't do it?
STEPANEK: I should wear a tux every single day.
UNIDENTIFIED FEMALE: You would be thrilled if you got to wear a tux every single day.
STEPANEK: I would.
Ah, I can't even rub your shoulders. There's things on it.
UNIDENTIFIED FEMALE: You know what. You look nice, too, dear.
STEPANEK: I like these things. When you're done with it, can I have one of the things?
UNIDENTIFIED FEMALE: You've grown since we measured you a week ago, I think.
(END VIDEO CLIP)
KING: Mattie at a black-tie affair.
In this segment, Mattie is going to read a couple of his poems.
Let's get another call in.
Cape Girardeau, Missouri, hello.
CALLER: Hey, Mattie.
STEPANEK: Hello.
CALLER: I got a couple of things to say before I ask my questions. I would like to say you're a real good inspiration to everybody that works the telethon, especially me.
STEPANEK: Thank you.
CALLER: Because I work at the telethon every year. I'm 24. And I went to the clinic to see if I got a thing called myotonic muscular dystrophy, which is also known as Steinert's disease. And I'm lucky to know that I don't have it, but I've got to go back.
KING: What's your question, sir?
CALLER: I got two questions. One is, Mattie, at what age did you get your disease? And, two, do you like working with Jerry Lewis and the telethon?
STEPANEK: To answer your first question, I was born with this disease. All four of my brothers and my sister -- I'm sorry, all four of us were born with it, me and my two brothers and my sister. And my mom was born with it, but it didn't kick in until she was an adult.
And to answer your second question, I love working with Jerry Lewis and everyone else at the telethon. They're great. They're fun. It is really an amazing gang to go on the air.
KING: Mattie, you want to read one of your poems before we take the next call?
STEPANEK: Yes.
KING: Go ahead.
STEPANEK: This one is called, "Seeds for Thought."
"The sword is heavy, and piercing sharp. Stronger than rock, it yields a mighty blow to the foe with each assault. T he bow and arrow are light and swift. Silent war implement, it yields a surprise attack to front or back, from a distance. And yet, stronger than the sword, swifter than the arrow, are words, among the most powerful of all weapons. Words can tear and hurt and cause pain and strife. Words can heal and comfort and sow peace in life. Heed the wisdom, and use words with care."
KING: Connecticut for Mattie Stepanek, hello.
CALLER: Hello.
Hi, Mattie.
STEPANEK: Hi.
CALLER: I have all your books of poetry. And I have many poems of yours that are my favorite. One of them right now is "The Daily Gift."
And I my question is, are you planning to go on tour, if possible, near the East Coast, particularly Connecticut, promoting your book and peacemaking efforts? And I want to thank you, also. I'm a police officer for 15 years. And I've been through a lot. And you've opened my heart up.
KING: Wow.
CALLER: To your poetry.
STEPANEK: Thank you.
CALLER: And to pray more. And it's softened up now from your poetry. And I appreciate that.
KING: Thank you, officer.
Can you travel? Can you make appearances?
STEPANEK: Right now, because I'm going in the hospital, I don't know how long I'll be in there.
But going on tour, once a year, I go out to the Jerry Lewis Labor Day telethon to California. But since it is such a long way and we really -- we have limited supplies, I really don't know if I'd ever go on a real, like, tour, stop at every city on the way. I'd love to do that. I love to explore, love the travel. But I don't know if my medical status would like that very much. But I've thought about doing that, yes.
KING: Rockford, Illinois, hello.
CALLER: Hi, Mattie.
First of all, you are a true hero. My question is double. Have there been any fund-raisers for you and your family and for research? Because I'd like to challenge 10 million people in the United States to all send a dollar or more to you. Maybe your parents could get a P.O. box or we could send it to Larry, so that some day you can be a history professor for someone, because you truly are an inspiration.
STEPANEK: Thank you very much.
If you were going to do that, challenge everyone to just send a dollar, don't send it to me or my mom. I'd rather it go straight to the Muscular Dystrophy Association. Every cent counts. Every penny, every second of research will get us closer to a cure. I like that idea, but please make it to the MDA.
KING: Do you want to read another poem before we continue?
STEPANEK: Sure, yes. Thank you. This one is -- it is embedded in art. It is called "Timeless Existence."
KING: OK.
STEPANEK: And "Timeless Existence": "It is nice when people notice you are present, but it is important when people notice you are absent. It is sad that absence makes the heart grow fonder. We should rather that presence makes the heart grow fondest. Then, even when we are gone into our future, we still live in the present of our past."
KING: We'll be back with our remaining moments with Mattie Stepanek, get some more phone calls in.
Don't go away.
(BEGIN VIDEO CLIP, "GOOD MORNING AMERICA")
JIMMY CARTER, FORMER PRESIDENT OF THE UNITED STATES: Hello.
STEPANEK: Hello.
CARTER: One of the great ambitions of my life is to meet Mattie. And I'm glad to see you.
STEPANEK: I'm glad to see you.
CARTER: And I'm so proud of your poetry book. I wrote a poetry book a few years ago. It never got on "The New York Times" best- seller list.
(LAUGHTER)
(END VIDEO CLIP)
(COMMERCIAL BREAK)
STEPANEK: Well, it looks like these peanuts are ready. I waited until there were about 50 peanuts on an underground vine. Then I pulled them up and put them in my wagon and took them home and fresh boiled them. And then, every Saturday, I sold about 20 bags for a nickel each. I never went home until each bag had been sold.
(END VIDEO CLIP)
KING: We're back with Mattie Stepanek.
Castro Valley, California, hello.
CALLER: Hi, Larry.
Hi, Mattie.
STEPANEK: Hello.
CALLER: You truly are an inspiration to children and adults alike.
I have a question for you about your trach. I have a husband that had a trach. While he had his trach, he was fed all of his nutrition through bolus feeding. And if this is what is happening to you now, how do you keep your spirit without eating natural food?
STEPANEK: Well, that would be a very hard question for me, because, when I first got my trach, I was aspirating. When I would swallow, food would go into my lungs. But I trained myself not to do that.
And now I think I really enjoy sitting down to a meal with friends, by myself and my mom. I like to eat, but if I was on feeding, while I would turn on my machine and let it go straight into my stomach, I would think about chewing and swallowing.
KING: You want to do another poem before we get another call in?
STEPANEK: Yes, please.
This one is another one from my new book "Loving Through Heartsongs," "About Happiness": "To me, happiness is traveling, not really me traveling, but my heartsongs traveling. When the songs in my heart travel out and around the world, in the things that I say, and in the poems and stories that I write, and in the prayers that I feel to God, and when the letters and words of those heartsongs bring some peace to the countries and people who have war in their lives, that is real happiness to me."
KING: Let's get in one more call.
Erie, Pennsylvania, hello.
CALLER: Hi, Mattie.
I'm 11. And I was wondering what your main goal in life is.
STEPANEK: My main goal in life, first of all, is to live every day to the fullest, no matter how long that is. I want to become a poet and a peacemaker.
KING: You're both already.
STEPANEK: Spread my peace throughout the world. And I want to expand more and keep writing and keep speaking. And when I am gone, I want to be remembered as a poet, a peacemaker, and a philosopher who plays.
KING: Mattie, you're a great...
STEPANEK: And I also want to be a daddy.
(LAUGHTER)
KING: I know that. That's good, too. You're a great little boy. Good luck at the hospital tomorrow. Get better soon.
STEPANEK: Thank you.
KING: You're in our thoughts.
STEPANEK: Thank you. You, too.
KING: Mattie Stepanek, "Loving Through Heartsongs," with a foreword by Maya Angelou. And look for that forthcoming album of his music sung by Billy Gilman.
I'll come back and tell you about tomorrow night right after this.
(COMMERCIAL BREAK)
KING: Tomorrow night, a panel of United States senators, including McCain and Feinstein, will be aboard.
We've got new digs. They've sort of put me in an amphitheater here, a semicircle, in Los Angeles.
Aired February 17, 2003 - 21:00 ET
THIS IS A RUSH TRANSCRIPT. THIS COPY MAY NOT BE IN ITS FINAL FORM AND MAY BE UPDATED.
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.
KING: We will take a break and come back with more phone calls for Mattie Stepanek on this edition of LARRY KING LIVE. Tomorrow night, senators McCain, Feinstein and others will join us to discuss, you know what. Don't go away.
(COMMERCIAL BREAK)
(BEGIN VIDEO CLIP)
UNIDENTIFIED FEMALE: Do you like "The Lord of the Rings?"
STEPANEK: I love the movies, the books. They're all great. My favorite character, without question, is Gandalf. (BEGIN VIDEO CLIP, "THE LORD OF THE RINGS: THE FELLOWSHIP OF THE RING")
IAN MCKELLEN, ACTOR: You shall not pass!
(END VIDEO CLIP)
STEPANEK: He's just awesome.
My second favorite, I like Sam.
(BEGIN VIDEO CLIP, "THE LORD OF THE RINGS: THE FELLOWSHIP OF THE RING")
SEAN ASTIN, ACTOR: I made a promise, Mr. Frodo, a promise. "Don't you leave him, Samwise Gamgee."
(END VIDEO CLIP)
STEPANEK: Favorite bad guy is, even though the ring -- the Balrog.
UNIDENTIFIED FEMALE: The Balrog?
(BEGIN VIDEO CLIP, "THE LORD OF THE RINGS: THE FELLOWSHIP OF THE RING")
MCKELLEN: Dark fire will not avail you, flame of Udun!
(END VIDEO CLIP)
STEPANEK: I've seen "Two Towers" four, but I want to see it six. And I want to see "Return of the King" the most. I want to see "Return of the King" so bad.
(END VIDEO CLIP)
KING: We're back with Mattie Stepanek.
Why do you love the "Lord of the Rings" so much?
STEPANEK: It is really -- "Lord of the Rings" is an amazing fantasy novel. Just reading it, it is one of those books that just so easily takes you in and just puts you in this other world.
KING: You like the movies as much as the books?
STEPANEK: I do. They are doing an amazing job with the movies.
KING: Speaking of amazing and "Loving Through Heartsongs," which is -- there's also going to be an album coming with music. We've discussed that. Mattie does his own drawings that are featured throughout this book. And I might say, they're near Grandma Moses- quality brilliant.
Have you always been able to draw? STEPANEK: The pictures in my book are all finger-paints. And I have been doing that for a long time, since I started doing these arts.
But drawing with a pencil, I can't -- really, it is tough -- for me to picture something in my mind, that's easy. Drawing it isn't as easy, though, but I can copy a lot of stuff, also.
KING: All right, Mattie, let's go back to the phone calls.
Rockaway Beach, Missouri, hello.
CALLER: Hi, Mattie.
STEPANEK: Hello.
CALLER: I think you a great person for other kids to look at. And my question is, what keeps you going?
STEPANEK: What keeps me going?
There are a bunch of great figures in my life. And one of the things is friends, friends and family, especially my mom. And, I mean, it is always good to have someone that you lean on, a hug, say, hey, how are you doing? And they answer back, I'm doing OK, and you?
And my mom, like I said, is a huge thing that keeps me going. And probably the biggest thing is God. I would not have lasted a minute, literally a minute, on this earth without God and angels by my side, because I was born. And right as I was born, I went into a respiratory arrest. So, big things that keep me going are friends and family, God. And another thing is looking forward to what's going to happen tomorrow.
KING: Rome, Georgia, for Mattie Stepanek, hello.
CALLER: Mattie, you're such an inspiration.
STEPANEK: Thank you.
CALLER: You're very welcome.
And the question I have is, with your age, with your infinite wisdom being way beyond your age, year-wise, what words of comfort and advice would you offer to a family member in her early 30s who suddenly became paralyzed last year?
STEPANEK: Suddenly became -- you know, keep hoping. No one can ever give up their hope. You're basically giving up life and waiting to be taken, waiting to die, and saying: No, that's it. I'm not doing this.
Just because something happens -- it's, like, I remember. I didn't always have this trach. I had it when I was a little baby. When I got back in -- I mean, I got it taken out. I'm sorry. And it was the best -- one of the best periods of life. I could -- I learned how to do flips off the diving. I got a black belt in martial arts, things I could never do attached to a trach.
And then it came back in. And even though, sure, I can't flip around anymore, I keep looking forward to every day, doing something with my friends. And always look towards the sunrise. Don't look back. Remember the past. Don't dwell on it. Look towards the future, but don't count on it. And always enjoy every single second of the present.
KING: Santa Cruz, California, for Mattie Stepanek. The new book is "Loving Through Heartsongs."
Hello.
STEPANEK: Hello.
CALLER: Hello.
I pray for you and your mother every night.
STEPANEK: Thank you.
CALLER: And I have two questions. What is your favorite subject in school? And is that doggone sore you had on the back of your head healing?
STEPANEK: Well, to your first question, in my schoolwork, my favorite subject is probably my British literature and my world history. I also enjoy my vocabulary. And to give you an honest answer, my least favorite subject is biology.
And, for the second question, is that doggone sore on the back of my head gone, it is so close. It's been there for about two years now. And it is really -- it is really coming so close. I mean, we're just praying and hoping and trying to give it the best medical care we can. And it is so close to healing. But I mean, we still need lots of prayers. And the sore will go away. And, hopefully, whatever is going on in my trachea will also go away.
KING: You do karate, huh?
STEPANEK: I used to.
Still, every day, I stretch. I meditate. But I used to love doing my martial arts. It was just so much fun. And I loved to do my staff routine, which is -- some people call it a bow.
KING: How long can you come out of the chair for?
STEPANEK: I can still stand a little bit. But right now, I'm really trying to limit my activity, because moving around too much might move my trachea around too much. I stand up to reach things, to transfer into another chair or a bed or to use the bathroom, just little things.
KING: Tampa, Florida, for Mattie Stepanek, hello.
CALLER: Yes, Larry.
My question for Mattie is, when you go to sleep at night and you dream, do you see yourself with all the machines that have to help keep you alive or do you see yourself before then, like when you were doing the karate, as just a regular boy just running around?
KING: Yes, do you fly?
STEPANEK: In my dreams, across the years and even now, I do a lot of things.
Sometimes I'm with the equipment. And sometimes I'm without. I'm just doing whatever. One night, I was dreaming that I was on the journey with the Fellowship of the Ring. And the next night, I was dreaming that I was stuck at the hospital. And sometimes I dream I'm flying. And sometimes I dream I'm falling.
It is really luck of the draw when I go to sleep. I usually dream good, dream bad, or just close my eyes and then, when I open them, it is morning. But sometimes I see myself in the chair. Sometimes I see out of the chair.
KING: Ceres, California, hello.
CALLER: Hi, Mattie and Larry.
KING: Hi.
CALLER: First of all, I'd like to thank Mattie for the heartsongs he's brought into my heart and my family.
My question -- I have two, actually -- is, during your darkest times medically, Mattie, do you come up with some of your most heartfelt heartsongs?
STEPANEK: Sometimes, when I'm really having a hard time medically, I will pray and I will think. But, usually, I just pray straight to God and St. Jude Thaddeus, St. Rita and Blessed Brother Andre for just a miracle: Please help me.
And sometimes I do think about my heartsongs. I think about that a lot, yes.
KING: We'll take a break and be back with more phone calls for Mattie Stepanek.
Don't go away.
(COMMERCIAL BREAK)
UNIDENTIFIED FEMALE: Is there an up and a down to this?
STEPANEK: You've gone from mom to mom. Do you know how to do this?
UNIDENTIFIED FEMALE: No. STEPANEK: You can make a flash
(CROSSTALK)
UNIDENTIFIED FEMALE: OK, can you just pretend like I got it on, because I can't do it?
STEPANEK: I should wear a tux every single day.
UNIDENTIFIED FEMALE: You would be thrilled if you got to wear a tux every single day.
STEPANEK: I would.
Ah, I can't even rub your shoulders. There's things on it.
UNIDENTIFIED FEMALE: You know what. You look nice, too, dear.
STEPANEK: I like these things. When you're done with it, can I have one of the things?
UNIDENTIFIED FEMALE: You've grown since we measured you a week ago, I think.
(END VIDEO CLIP)
KING: Mattie at a black-tie affair.
In this segment, Mattie is going to read a couple of his poems.
Let's get another call in.
Cape Girardeau, Missouri, hello.
CALLER: Hey, Mattie.
STEPANEK: Hello.
CALLER: I got a couple of things to say before I ask my questions. I would like to say you're a real good inspiration to everybody that works the telethon, especially me.
STEPANEK: Thank you.
CALLER: Because I work at the telethon every year. I'm 24. And I went to the clinic to see if I got a thing called myotonic muscular dystrophy, which is also known as Steinert's disease. And I'm lucky to know that I don't have it, but I've got to go back.
KING: What's your question, sir?
CALLER: I got two questions. One is, Mattie, at what age did you get your disease? And, two, do you like working with Jerry Lewis and the telethon?
STEPANEK: To answer your first question, I was born with this disease. All four of my brothers and my sister -- I'm sorry, all four of us were born with it, me and my two brothers and my sister. And my mom was born with it, but it didn't kick in until she was an adult.
And to answer your second question, I love working with Jerry Lewis and everyone else at the telethon. They're great. They're fun. It is really an amazing gang to go on the air.
KING: Mattie, you want to read one of your poems before we take the next call?
STEPANEK: Yes.
KING: Go ahead.
STEPANEK: This one is called, "Seeds for Thought."
"The sword is heavy, and piercing sharp. Stronger than rock, it yields a mighty blow to the foe with each assault. T he bow and arrow are light and swift. Silent war implement, it yields a surprise attack to front or back, from a distance. And yet, stronger than the sword, swifter than the arrow, are words, among the most powerful of all weapons. Words can tear and hurt and cause pain and strife. Words can heal and comfort and sow peace in life. Heed the wisdom, and use words with care."
KING: Connecticut for Mattie Stepanek, hello.
CALLER: Hello.
Hi, Mattie.
STEPANEK: Hi.
CALLER: I have all your books of poetry. And I have many poems of yours that are my favorite. One of them right now is "The Daily Gift."
And I my question is, are you planning to go on tour, if possible, near the East Coast, particularly Connecticut, promoting your book and peacemaking efforts? And I want to thank you, also. I'm a police officer for 15 years. And I've been through a lot. And you've opened my heart up.
KING: Wow.
CALLER: To your poetry.
STEPANEK: Thank you.
CALLER: And to pray more. And it's softened up now from your poetry. And I appreciate that.
KING: Thank you, officer.
Can you travel? Can you make appearances?
STEPANEK: Right now, because I'm going in the hospital, I don't know how long I'll be in there.
But going on tour, once a year, I go out to the Jerry Lewis Labor Day telethon to California. But since it is such a long way and we really -- we have limited supplies, I really don't know if I'd ever go on a real, like, tour, stop at every city on the way. I'd love to do that. I love to explore, love the travel. But I don't know if my medical status would like that very much. But I've thought about doing that, yes.
KING: Rockford, Illinois, hello.
CALLER: Hi, Mattie.
First of all, you are a true hero. My question is double. Have there been any fund-raisers for you and your family and for research? Because I'd like to challenge 10 million people in the United States to all send a dollar or more to you. Maybe your parents could get a P.O. box or we could send it to Larry, so that some day you can be a history professor for someone, because you truly are an inspiration.
STEPANEK: Thank you very much.
If you were going to do that, challenge everyone to just send a dollar, don't send it to me or my mom. I'd rather it go straight to the Muscular Dystrophy Association. Every cent counts. Every penny, every second of research will get us closer to a cure. I like that idea, but please make it to the MDA.
KING: Do you want to read another poem before we continue?
STEPANEK: Sure, yes. Thank you. This one is -- it is embedded in art. It is called "Timeless Existence."
KING: OK.
STEPANEK: And "Timeless Existence": "It is nice when people notice you are present, but it is important when people notice you are absent. It is sad that absence makes the heart grow fonder. We should rather that presence makes the heart grow fondest. Then, even when we are gone into our future, we still live in the present of our past."
KING: We'll be back with our remaining moments with Mattie Stepanek, get some more phone calls in.
Don't go away.
(BEGIN VIDEO CLIP, "GOOD MORNING AMERICA")
JIMMY CARTER, FORMER PRESIDENT OF THE UNITED STATES: Hello.
STEPANEK: Hello.
CARTER: One of the great ambitions of my life is to meet Mattie. And I'm glad to see you.
STEPANEK: I'm glad to see you.
CARTER: And I'm so proud of your poetry book. I wrote a poetry book a few years ago. It never got on "The New York Times" best- seller list.
(LAUGHTER)
(END VIDEO CLIP)
(COMMERCIAL BREAK)
STEPANEK: Well, it looks like these peanuts are ready. I waited until there were about 50 peanuts on an underground vine. Then I pulled them up and put them in my wagon and took them home and fresh boiled them. And then, every Saturday, I sold about 20 bags for a nickel each. I never went home until each bag had been sold.
(END VIDEO CLIP)
KING: We're back with Mattie Stepanek.
Castro Valley, California, hello.
CALLER: Hi, Larry.
Hi, Mattie.
STEPANEK: Hello.
CALLER: You truly are an inspiration to children and adults alike.
I have a question for you about your trach. I have a husband that had a trach. While he had his trach, he was fed all of his nutrition through bolus feeding. And if this is what is happening to you now, how do you keep your spirit without eating natural food?
STEPANEK: Well, that would be a very hard question for me, because, when I first got my trach, I was aspirating. When I would swallow, food would go into my lungs. But I trained myself not to do that.
And now I think I really enjoy sitting down to a meal with friends, by myself and my mom. I like to eat, but if I was on feeding, while I would turn on my machine and let it go straight into my stomach, I would think about chewing and swallowing.
KING: You want to do another poem before we get another call in?
STEPANEK: Yes, please.
This one is another one from my new book "Loving Through Heartsongs," "About Happiness": "To me, happiness is traveling, not really me traveling, but my heartsongs traveling. When the songs in my heart travel out and around the world, in the things that I say, and in the poems and stories that I write, and in the prayers that I feel to God, and when the letters and words of those heartsongs bring some peace to the countries and people who have war in their lives, that is real happiness to me."
KING: Let's get in one more call.
Erie, Pennsylvania, hello.
CALLER: Hi, Mattie.
I'm 11. And I was wondering what your main goal in life is.
STEPANEK: My main goal in life, first of all, is to live every day to the fullest, no matter how long that is. I want to become a poet and a peacemaker.
KING: You're both already.
STEPANEK: Spread my peace throughout the world. And I want to expand more and keep writing and keep speaking. And when I am gone, I want to be remembered as a poet, a peacemaker, and a philosopher who plays.
KING: Mattie, you're a great...
STEPANEK: And I also want to be a daddy.
(LAUGHTER)
KING: I know that. That's good, too. You're a great little boy. Good luck at the hospital tomorrow. Get better soon.
STEPANEK: Thank you.
KING: You're in our thoughts.
STEPANEK: Thank you. You, too.
KING: Mattie Stepanek, "Loving Through Heartsongs," with a foreword by Maya Angelou. And look for that forthcoming album of his music sung by Billy Gilman.
I'll come back and tell you about tomorrow night right after this.
(COMMERCIAL BREAK)
KING: Tomorrow night, a panel of United States senators, including McCain and Feinstein, will be aboard.
We've got new digs. They've sort of put me in an amphitheater here, a semicircle, in Los Angeles.
