Thursday, November 12, 2009

"Messenger: The Legacy of Mattie J.T. Stepanek and Heartsongs" by Jeni Stepanek

"Messenger: The Legacy of Mattie J.T. Stepanek and Heartsongs”, is written by Jeni Stepanek, mother of the hero of the book, with Larry Lindner. It includes a foreword by Maya Angelou. It was released on November 3, 2009, by Dutton, a division of Penguin Books.

Mattie J.T. Stepanek was this amazing kid who just happened to suffer from a rare disorder that later came to be known as Dysautonomic Mitochondrial Myopathy. His three siblings all died by the age of four of the same disorder, and his mother was diagnosed with the adult onset form after having given birth to them. They are the only five people ever diagnosed with this particular form of the disorder.

Told from the first person, Jeni is one of the main characters of the book, as the mother who cared for her son and supported his efforts, yet Mattie is the focus. She sees him as a gift from God and is thankful for the time she was able to share with him and her other children on this earth.

From the beginning you know that he is going to die at the age of thirteen, and the suspense of the reader in seeing how he is going to live his life in between crises, and when he is going to die, is a faint echo of what you know Jeni and Mattie lived through in real life time. Jeni is very descriptive of all that they went through, but the book is much larger than that.

From an early age, Mattie defied the doctors’ predictions, so that eventually they gave up saying there was no hope and just let him go the course. He taught himself to read and write, and was so far ahead of his age peers in school that homeschooling became the best option for him. By middle school he was attending a local college for his coursework.

By the age of three he was writing poetry, and became a bestselling author. He published six collections of Heartsongs poetry and one collection of peace essays. “Heartsong” is a word he coined for a person’s essence. He believed that everyone should share their heartsongs with each other to make the world a better place. His poetry and his life work were all for the purpose of spreading the message of peace and hope.

He was the National Goodwill Ambassador for Jerry Lewis’s Muscular Dystrophy Association for three years in a row, traveling along with his all his life support equipment to give inspirational talks to large audiences and appear on television programs such as Larry King Live and Oprah Winfrey. His final project was assisting Jimmy Carter in the writing of the book “Just Peace”.

The book features never-before-published essays and poems from Mattie’s journals, as well as e-mail exchanges between him and one of his best friends, Oprah Winfrey.

I had a few reservations about the book that I feel I must disclose to the Catholic reading audience. Jeni, herself a Catholic, chose to leave an abusive marriage; divorce is mentioned but not an annulment. Mattie’s best friends are also some of the more liberal celebrities. If you are not a fan of Oprah, you might get tired of reading all of her supportive emails to Mattie. You may not agree with the choices of books and movies Mattie enjoys.

There is one story on p. 203 that gave me pause. Someone asks Mattie if they can put a “Celebrate Diversity” sticker on the back of his wheelchair. When a nurse and close friend explains to him and Jeni that it is a “gay pride” sticker and that people might think he is gay, he chooses to leave it because “God’s love includes all people”. I understand his point of view, but Jeni goes further in stating in the book, “So many people who are antigay point to the Bible to support the opinion that homosexuality is a sin. But Mattie understood that the Bible had to be read with an eye toward historical and cultural context.”

Other than that, the book is profoundly pro-life. The doctors all begged her to get an abortion; she would not. They told her to put Mattie in an institution; she chose to be his mother. She chose to let him live his life as much as he could, and went to great lengths to allow him to see his vision through. When it came to the end of his life, she allowed him the dignity to take part in the decisions about heroic life-saving measures. She and others made sure that all of his wishes were carried out when he was buried. They honored his life through continuing to carry on his message to the world.

Dutton sent me a preview copy of the book in exchange for my honest review. I have to admit that, when I read the description, I was not too excited about it. It sounded like a depressing topic, and I usually like to read to escape reality for a while. But I took the assignment and was glad I did. Other than the reservations I have mentioned, I recommend this book as a tribute to a great young soul with a message of hope and peace.

This article appears as a guest post at Catholic Mothers Online.

For more about Mattie and his life see his tribute website.

For ordering information see Dutton Publishing at Penguin Books.


Jeni Stepanek said...

Thank you for your review and comments of my book, "Messenger." I am glad that you accepted the assignment to read about my son, poet and peacemaker, Mattie Stepanek. Moreover, I am excited to read that you see this book not as a tragic tale of loss, but as a celebration of Mattie's life and legacy, which truly continues to gently touch lives and spirits around the world today. I am proud of my son, and of how he tried to be a witness to the love of God and our Savior Jesus Christ through his words and actions. And, I am very proud that I was blessed with the gift of being 'mommy' to all four of my children.
In hope and peace,
Jeni Stepanek, Ph.D. ("Mattie's mom, and also Katie, Stevie, and Jamie's mom).

Elizabeth Kathryn Gerold-Miller said...

Jeni, it is an honor to have you visit my site. God bless you as you continue to carry on Mattie's message to the world.

Jeni Stepanek said...

Hi Elizabeth, I did want to note that 'annulment' (I believe) is sought if one is to 're-marry.' I had/have no intention to remarry. I had one marriage, and though that went awry, I will never seek to 'annul' this marriage, because I have four beautiful children from that sacrament of matrimony. How could I say that didn't exist? I choose not to share the details of why I left my marriage, because that is personal, and should not be a distractor from my son's message of hope and peace. One other comment I would like to share was the comment re: 'historical context' with respect to interpretting the Holy Bible. I do believe that the Bible IS the Word of God, translated through human beings, and written during and with a historical and cultural context that served to help humans understand God, and God's love for creation. Just as Christians have come to understand that we do not follow 'an eye for an eye,' and that we can plant more than one type of seed in a garden, or that we can eat pork or choose not to circumcize a baby boy. My statement is that, like Mattie, I believe that God is the judge of what grows from our human free will. With so much 'hate' in our world, I am saddened that folks would choose to focus on (and stir up more hate) on acts of love, even if those acts are not understood or even supported. I hope that helps you better understand my thoughts, and how I tried to raise my son. Again, thank you for what I see as a beautiful and honest review of my new book. I hope that your comments encourage many readers to buy this book, read it, and pass the message of hope and peace to others!
Take care,
Jeni Stepanek, Ph.D.

Elizabeth Kathryn Gerold-Miller said...

This article also appears as a guest post at Catholic Mothers Online.

Loren Christie said...

First, thank you for the book. How cool that you got a response from the author? As I said before, I do know a little about Mattie from using his poetry in a unit plan for high school students years ago. This is the story of a wise little boy who lived a beautiful life, and I'm looking forward to reading it.