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Shells: Sustained by Grace within the Tempest Paperback – November 29, 2014
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The Amazon Book Review
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About the Author
Shells : Sustained by Grace within the Tempest ABOUT THE AUTHOR Steve Heronemus is a husband and father of four who has been living with ALS since 2003. He has been an avid amateur musician, sailor and leader in church and community roles and has received honors as Valparaiso University Distinguished Alumnae for Community Service, Capgemini Community Leader, and Les Turner ALS Foundation Patient of the Year. www.steveheronemus.com
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Imagine being slowly stripped of everything you believed defined you - being forced to live in your shell of a body as it slowly imprisoned the essence remaining inside. Like a prisoner facing solitary confinement, your very definition of life will change and it becomes a test of character as to whether you will survive and how. The first reason this book should be read is that it is a miracle of grace, determination, and love that it was written at all. The author was originally only given two to three years to live when he was first diagnosed with ALS (also known as Lou Gehrig's disease) in 2005. Defying the odds and current medical dictates, he survived and, indeed, thrived. "Shells: Sustained by Grace Within the Tempest" takes you into one man's journey seeking to not only survive the ravages ALS cast upon himself and his family, but to thrive and to ultimately find a life sustained by grace. Steve Heronemus is a spiritual man who loves his music, his family, his life, and his God. As the title suggests, faith is a large part of the equation, but the book is not your ordinary tale of a spiritual journey; Steve's writings combine a wry autobiographical flair with profound insights into a life enriched and sustained by music (he is a gifted musician whose first hint of ALS was the progressive toll it took on his ability to use his hands to play his instruments) and music's joyful connection to community with God and one another. Written over the course of several years, this book took shape - first with the assistance of an electronic recording device, and later through the use of an aid that allowed the author to pick his words, letter by letter, by use of eye movement. Knowing this about the author might have caused me to pick up the book, but the beauty of the prose was what caused me to sit, rapt and reading, until I finished the book that same night. Using well-crafted analogies and metaphors (to shells, music, sailing) and interspersing humble (and at times humorous) vignettes of his personal journey along with erudite commentary on the current state of the ALS medical research and treatment, and insurance coverage currently available in the United States, the author creates several intertwined themes that draw you in - to tears, to anger, to personal self-discovery and acceptance, to serenity, and even to joy in the beauty of the life that is possible in the face of a terminal illness with the support of a loving family and an involved community. And, last but not least, this book is an incredible love letter to the author's wife, who has devotedly loved him through better and through worse, who never let Steve forget the man he remained inside the shell, and who encouraged that man to peek out of that ALS shell to share his literary pearl with the world. In my humble opinion, Mr. Heronemus, you indeed managed to create "literary music" with this endeavor. I highly recommend this book (a portion of the proceeds from sales also goes to support ALS research) and have myself already purchased a number of additional copies as holiday gifts. Note: Reviewer did not receive any compensation or free goods in return for this review.
This book isn't going on my shelf. I'm keeping it on my desk to randomly re-read a section whenever I think I'm having a bad day. One's perspective can't help but change when hearing the author's brilliant voice from within a failing body describe the pure joy of his relationship with family, music and God. Is this a literary award winning author-to-be? No, but the message certainly hits it's mark. Do I recommend buying this book? Half way through I started my list and today I'm purchasing several more copies for family and friends.
Having known Steve and his wife Suzanne for nearly seven years, I came onto the scene long after their journey through ALS had begun. I remember when Steve still walked and I still picture him at our dining room table, enjoying a glass of wine and sharing tales of a man who understood where he was in life and was determined not to let a disease define him. As the disease takes away one physical ability and then another, I see him fighting the onset but always remaining true to his principles, to his family, and to his God.
It has been some months since Steve lost the ability to speak clearly, and I missed hearing his voice. By time I reached page ten, I heard that voice, that personality, clear as ever. And that voice is one of the hallmarks of a good writer.
Another hallmark of Steve's writing style is his ability to move the reader, to make him laugh or cry. And I do mean that literally. Any writer with a voice who can make me laugh OR cry is a good writer. One who can do both is better than that. But one who can do both simultaneously within one paragraph? That is an excellent writer. When Steve told us of his confidence not only about going to heaven, but where he will be found . . . well, that is about a fine a passage as I know of.
Read this book and make yourself a new friend, one you will never forget. Read this book and learn about progression of a disease but a fight to retain a meaningful life. Read this book and be challenged to be a better person yourself. You will want to do that for your friend. Read this book and you will have perspective on the battles you face and how to fight them with grace and courage.
Four years ago, I asked Steve for a favorite Bible verse and he responded with Micah 6:8: And what does the Lord demand of you? To act justly, to love mercy, and to walk humbly with your God. Even consigned to a wheelchair, this man walks humbly and with power. When you read this book, you too will walk with him. Enjoy!