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| Just Peace |
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Reflections
of a
Peacemaker |
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| Heartsongs |
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Journey
Through
Heartsongs |
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Hope
Through
Heartsongs |
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Celebrate
Through
Heartsongs |
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Loving
Through
Heartsongs
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Music
Through
Heartsongs |
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Q: When and how did you begin writing poetry?
A: I began writing poetry when I was about three years old. My brother, Jamie, died. I loved him so much. He was my best friend. I didn't really know my other brother, Stevie, or my sister, Katie. But when Jamie died, I was angry and sad and scared and confused. A lot of my early stuff was about my feelings after Jamie died, and how I learned to cope with it. Even though I could read when I was three, most of my early stuff was what I dictated to my mom. Then she gave me a tape recorder so I could make poetry and stories even if she wasn't free to write them down. When I was five, I started writing some of them by hand, and I learned to use a keyboard and type my work when I was eight. Now, I write about many, many different things, but I am back to using a tape recorder a lot because my fingers bleed a lot. One day I will get one of those computer programs that recognizes my voice.
Q: Do you go to a regular school and what are your favorite subjects?
A: I went to a great public school until I was nine years old, with some of the best teachers in the world. I skipped third, fifth grade, and seventh grades. I didn't really start homeschooling because I had skipped grades. It was because my health began to get much worse when I was about nine. Even though I would have some good days, I missed so much school that it was like I wasn't really a part of the class anymore. When I was nine and ten, I did middle school, and I began high school courses when I was 11. But that doesn't mean I will graduate soon! My mom and I both believe that high school courses are so rich and there is so much more to education than just books, so I will keep doing various high school courses until I am at least 16. I have also taken some courses at a local community college. My favorite subjects are history and literature. I love studying people. My least favorite subject is biology and most science courses. And even though I am sometimes good at Algebra II, I usually don't enjoy the work.
Q: Do you have any pets?
A: I have a Golden Retriever service dog named Micah. He is wonderful. He was born on March 12, 2002 near Seattle, WA. He is a really good help with picking things up and opening or closing doors and things like that. He is even learning when to alert me that something is not right with my ventilator. Sometimes he helps me sort laundry by getting what I point to and dropping it where I tell him to. Other times, he runs off with one of my socks, smiling and wagging his tail. I love my dog so much, and I miss him when I am in the hospital and he can't come into the ICU.
Q: Do you have any hobbies other than writing and public speaking?
A: I have lots of hobbies other writing and public speaking. I love to build with Legos, especially sets with castles, or islanders, or StarWars things in them. I enjoy video games, but I don't play any of the violent ones that are too much like the sad things that happen in everyday real life. I don't like guns at all. I love to read, and I am hoping to begin interviewing people on a video camera and making some kind of a documentary. I like to make lists. I know that sounds funny, but I love to list things: things to do, things to write, how to go through a day, the order of my schoolwork, endangered animals, books to read, Lego wishlists. anything, as long as it's organized into a list. I also love to talk with my friends on the phone, and go to the MDA Teen Meetings every month, where I hang out with my summer camp friends. Most of my friends are girls, or guys who are older than me.
Q: Who are your favorite authors and poets?
A: My favorite book authors are people like Harper Lee (To Kill A Mockingbird), Herman Melville (Moby Dick), Robert Louis Stevenson (Treasure Island), Lois Lowry (The Giver), and Dr. Seuss (The Butter Battle Book). I love the classics, biographies, adventure, and inspirational or philosophical books. My favorite poets include Maya Angelou, Shel Silverstein, Robert Blake, Robert Frost, and Emily Dickinson. I like poetry that makes me think, or laugh, or even cry.
Q: Do you ever get angry or scared about your disease or dying?
A: Of course I get angry and scared. I am very human. Some people think I am always brave. I try to be, but I cry like the next person sometimes. I am needle phobic and pain phobic, so that doesn't help. But even if I get upset, or think, "I can't do this anymore," I get myself together and pray or play or talk with my mom or a close friend, and I get beyond that tough time. I might say, "Why me?" But then I say, "Why not me? Better me than a little baby, or a kid who doesn't have strength or support." I am very blessed to have God and my mom so involved in my life. I am also lucky because I have a lot of great support from my doctors and MDA friends, and from all the people who write to me and tell me how my words have made a difference in their lives. I am so lucky that I get to see the difference. Everyone makes a difference in somebody's life. Everyone. It's just that not everyone gets the chance to realize that difference in this life. So my life is very difficult, and sometimes painful, but very full and blessed.
Q: What's it like living in a hospital ICU (intensive care unit) for so many months at a time?
A: It's not anything anyone would want to do. But, the PICU and Children's National Medical Center in Washington, DC is sometimes my home away from home. They are so good to me there. My mom is ALWAYS there for me. She even sleeps on a bench in the waiting room for months so that if I need her or if something goes wrong, she is there right away. And the staff is great. They don't just give the best medical care, they also give great emotional and spiritual care. They play with you and watch videos with you (most of the guys love playing poker and watching Austin Powers or Lord of the Ring flicks). They laugh at my practical jokes (like the remote control fart machine). They pray with you. They support the families with the kids. They had a great surprise birthday party for me once when I had been there forever (about five months). So, even though I have to say it's boring because you don't get anything on television (no cable!) and it's painful because to help sometimes they have to hurt, it's an okay place to be if you need to be in an ICU. Oh, and all that stuff you hear about 'hospital food' not belonging on the food chain. well, it's all correct. But my social workers would bring me in treats sometimes... like barbeque ribs!
Q: Do you get scared before you go on television or give a speech?
A: Not really. I get excited mostly before going on television. I think the times I do get nervous is when I am doing something for somebody else. I want to do it right. So if I am on a show to talk about my books or my thoughts, I am fine. But if I am trying to introduce Jimmy Carter, or help people understand why the MDA matters so much, or help doctors and nurses understand about family-centered care, then I get a little nervous because I am trying to help with something and what I say may make people listen, or change the station.
Q: Do you ever get in trouble like a normal kid?
A: Ummmm... I know my mom will read this, so the answer is yes. Of course. I don't always keep my room clean or clean up my dishes after myself. But usually I do. Mostly, I put off school work that is 'homework' type of stuff. I have 'school work' every day that is done in the mornings. But then I have assignments that I have to do on my own time, by a deadline. I'm not great at that because I procrastinate. So, when the deadline arrives, and passes, I know I won't be 'doing anything electronic' (includes television, VCR, video games, Gameboy, even the phone) until the work is produced in good quality. I also do little annoying things like not picking up my ventilator tubing before I move in my wheelchair, Then it can get caught in the wheels and get holes in it. But we have a token plan going, where I earn tokens that get traded in for cash if I remember to do all the medical and personal things on my checklist.
Q: What is something that most people wouldn't know about you?
A: Most people know by now that I am a practical joker and I love to make people want to smile. I don't know if a lot of people know that I earned a First Degree Black Belt in Hapkido (Martial Arts) before I needed to use the wheelchair and get my trach back in.
Q: Is it just you and your mom in your family?
A: Yes, I live alone with my mom, Jeni, and my dog, Micah. We are a small family, but we are very happy together. We live in a condominium that has eleven windows. I lived in a basement apartment for many years, so I am very excited about having windows now. Laura, a nurse from the PICU, comes to help take care of me three or four times a month. She's great. My mom's best friend, Sandy, lives in the condo unit right beside our unit. She helps my mom and me with everything from medical stuff to cooking and laundry. Sandy also taught me to love the Beatles (even though my mom tried to teach me to love John Denver). I consider Sandy, and her family, as a part of my family, too. She has three grown children, Heather, Jamie-D, and Chris, who are like siblings to me. Chris has a wife, Cynthia, and I was the best man at their wedding, and I am the proud uncle of their baby, Kaylee.
About favorites...
A lot of people ask me about my favorites in different categories. So I made a list of some of my favorite things that people ask me about.
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1990 -2004 |
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About Dunderheads
When laughing with,
Everyone has fun
Playing the fool.
When laughing
at,
The teaser is a
Lone, sad
Kind of fool.
October 31, 2000
© Matthew Joseph Thaddeus Stepanek
Used with permission from Loving Through Heartsongs, Hyperion, 2002
As It Was in the Beginning
When the playground is
Roaring with kids...
When the sky is
Thundering
with sunshine...
When the atmosphere is
Electrified with glee...
Then
is when we know
For sure that life is
Thriving...
Reverberating...
Exhilarating...
It is good, indeed.
Summer, 2000
© Matthew Joseph Thaddeus Stepanek
Used with permission from Celebrate Through Heartsongs, Hyperion, 2002
a-byss'
My life
Is halfway down
An abyss.
A deep
Immeasurable space.
A
gulf.
A cavity.
A vast chasm.
My life
Is not how
I planned it to
be.
Is not how
I want it to be.
Is not how
I pray for it
To
be.
In the darkness
Of this pit,
I see a small
Light of hope.
Is
it possible for me
To climb to such heights?
To rebuild the bridges?
To
find my salvation?
The song
In my heart
Is so quiet.
Is so
dark.
Is so fearful.
I dare not stay in
This abyss.
Though
deep
And vast,
I am only halfway
Down.
Thus, I am
Already
Halfway up?
Let such words
Fall onto my heart,
And raise me from
this depth.
January 6, 2001
© Matthew Joseph Thaddeus Stepanek
Used with permission from Hope Through Heartsongs, Hyperion, 2002
Making Real Sense of the Senses
Our eyes are for looking at things,
But they are also for crying
When we
are very happy or very sad.
Our ears are for listening,
But so are our
hearts.
Our noses are for smelling food,
But also the wind and the grass
and
If we try very hard, butterflies.
Our hands are for feeling,
But
also for hugging and touching so gently.
Our mouths and tongues are for
tasting,
But also for saying words, like
"I love you," and
"Thank You,
God. For all of these things."
April, 1995
© Matthew Joseph Thaddeus Stepanek
Used with permission from Heartsongs, Hyperion, 2002
Rapture
Have you witnessed
The early morning?
Right before the
Sun rises,
and
The sky glows
Purple lava-lamp?
The clouds are
The
dark,
Floating
Lumps, and
The still
Gentle earth
Is to look
upon.
December 3, 2000
© Matthew Joseph Thaddeus Stepanek
Used with permission from Loving Through Heartsongs, Hyperion, 2003
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