A friend, Nancy Nordenson, asked if I were interested in discussing our odyssey through Alzheimer’s for her blog. Yes, I said, without much thought. She sent me what I thought, at first, were five simple questions. That was in late September. I read the questions several times before deciding to set them aside. “I’m busy right now with my book launch, so I’ll have to get back to you later on these.” That was the excuse I gave Nancy for not responding immediately.
The fact was I had no quick answers for her questions. I had to digest them for a while before responding with any sense of clarity. Her questions gave me fresh insights into our family’s story. I stand amazed that after writing and rewriting our story, and editing it untold times, I still discover aspects of our journey that I hadn’t realized before.
Here is Nancy’s post from last week…
A PATH REVEALED: A CONVERSATION WITH CARLEN MADDUX ABOUT FINDING THE WAY THROUGH
by Nancy Nordenson
This is a picture of a manuscript that I read nearly a year and a half ago, studded by sticky notes nearly too many to count. These sticky notes aren’t there to mark suggested edits but instead they mark places in the text that took my breath away, or places that taught me something I need and want to remember, or scenes that I simply loved, or confessions that triggered sober witness. Written by Carlen Maddux, a friend from my hometown of St. Petersburg, Florida, this manuscript is now a book that has been recently published by the fabulous Paraclete Press.
A Path Revealed: How Hope, Love and Joy Found Us Deep in a Maze Called Alzheimer's is the story of Carlen and Martha Maddux in the years that followed Martha’s diagnosis of Alzheimer’s disease at the age of 50. Martha was a public figure in St. Pete, serving for years on the city council, managing multiple local and state political campaigns, and running herself for the Florida State Legislature.
Carlen, a journalist, takes the reader along his and his wife's path, and while their path is one through Alzheimer’s, the practical wisdom that emerges in their story can be overlaid on any crisis. The practical wisdom is applicable to life in general. Who among hasn’t faced circumstances that we wish were different than they are?
In A Path Revealed, Carlen learns what it means to take God seriously and personally. He learns what it is to lead, particularly to lead a family. He models what it's like to truly love your spouse. Self-help books in which the author has figured out 10 steps to living with [fill in the blank] and proceeds to teach in didactic fashion pale in comparison to this wise and personal journey hard-lived on every page.
Recently, I asked Carlen a few questions about the book, the writing of it, and the path through crisis, and he graciously responded.
This is your first book – why did you decide to write your story for a broad audience?
CM: While trying to develop my story line, I found two strong themes running along parallel rails: 1) Alzheimer’s and its potential for destroying a family; 2) The spiritual odyssey that emerged. I struggled trying to decide which was the organizing theme. Early on, I tapped a couple dozen readers for feedback; half of them didn’t know us. Each one of them told me that the focus of my story was this spiritual journey. Alzheimer’s was the context, they said. Developing this then as a spiritual odyssey moving through a life-threatening crisis immediately moved our story into an audience broader than one strictly focused on dementia. A clinical psychologist, who was one of my early readers, put it this way on the front cover: “This book belongs on the nightstand of every family coping with a crisis.”
In the book you wrote that your reporter instinct kicked in after Martha's diagnosis, driving you to try to figure out whether there was any way out of Alzheimer's. As you came to realize there was no way out of that particular diagnosis, what primary question, or questions, took that initial question's place?
CM: It was the most primeval of questions: HELP?!
How was journaling during this time instrumental in helping you find the way through this maze?
CM: I started a journal almost from the day Martha was diagnosed with Alzheimer’s. She was 50 at the time; I was 52. I didn’t begin writing a journal for “spiritual discipline” purposes. I did it to survive. I had so much information coming at me, and so many questions stirring up inside, that I needed a central clearinghouse. The idea of a journal instinctively arose. I’m glad it did. Soon enough, my thoughts and writings evolved into issues deriving from this spiritual odyssey. I wrote in this journal for a decade, consuming 14 volumes. My last entry was the day my wife moved into her nursing home.
How did the act of writing the book – even before you had a plan to publish it with Paraclete – help you achieve the wholeness that you referred to in the book's Prologue?
CM: Writing my book almost didn’t happen. The raw material for the book lay in the journal I’d kept, and I initially found it too difficult to open after having closed it five years earlier. Somehow I got past that grinding feeling. As I read and scanned the 14 volumes in no particular order, story fragments began linking together. Not only that, memories of conversations and images were awakened that I’d not written down, helping me to add color and texture to our story. Fourteen years into our journey—about the time I started to write my book—I suddenly realized how far our family had traveled, and from where we’d come.
I open my book’s Epilogue this way: “Only recently has the meaning of my walk with Martha at Gethsemani come clear to me, carved out like a statue in relief by the intervening years.” (A month after her diagnosis, Martha and I visited the Abbey of Gethsemani in Kentucky and climbed up through a wooded hill.) I continue: “Our family has stepped over jutting rocks and tangled roots and moved through a wooded darkness speckled with light. We have stumbled onto sunlit clearings and paused at the wonder of it all, lingering with delight before turning back to the path set before us. Yes, ours has been a maddening and frustrating journey, disheartening even. Yet somehow this walk—our walk—has followed a sacred path, pointing our way toward a Presence far greater and more real than any entrapment by a disease.”
How does the path through your crisis help people who find themselves in their own crisis, whether or not it is related to Alzheimer's?
CM: That’s a question best left to my readers. Based on the feedback I’ve received, though, our odyssey has so many twists and turns, dead ends and fitful starts, and yet a hope and joy emerging from this milieu, that the story seems to connect at levels that are unique to a reader’s particular crisis. How that happens, I’m not really sure. I do know that they feel a certain authenticity with the pain, suffering, and confusion I share, and thus an authenticity with the hope, love, and joy that arose.
Nancy (Erickson) Nordenson is by day a medical writer. By night, she’s an essayist and writer who explores the creative and spiritual realms of her life and environs. Her recent book is Finding Livelihood: A Progress of Work and Leisure. I shared some of Nancy’s story last March in a post titled How a Friend Found Meaning in a Job Loss. Nancy and her husband call Minneapolis home.
May we all take a deep breath to rest in this holiday season’s Spirit.
P.S. If you think our story is worth sharing, please think about giving my book, A Path Revealed, to family and friends who would find value in it. Or maybe your book club would like to read and discuss it. You can purchase the book several ways: 1) At your local bookstore or at a Barnes & Noble, which can order it if it’s not on the shelf. 2) On Amazon. 3) Via my publisher Paraclete Press, which offers discounts for multiple copies. Contact Sr. Estelle Cole by phone: 774-801-2030 or by email: firstname.lastname@example.org.
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