What I Heard on My Book Tour

I’m back in St. Pete from my 10-day “book tour” in Tennessee. Believe it or not, hometown friends even asked me to return to Cookeville. LOL.

I shared our story with 160 or more folks at the Alzheimer’s Tennessee conference in Knoxville and at two venues in Cookeville. On top of those, I also had two media interviews, which may come out later.

Those attending had questions and made a lot of comments, a few of which I’ll pass along to you.

Before doing that, though, I want to recount the overarching theme I shared with these groups…

"A health crisis like Alzheimer’s is often addressed by the medical community as a physical issue only. But my experience over the last two decades has shown me that Alzheimer’s and many other crises—health or otherwise—are also embedded with emotional, psychological, and spiritual issues that must be realized and resolved as best we can if we want to have any healing. Issues like fear, guilt, stigma, confusion, bitterness, anger, depression … and I could go on and on.”

This was true for my wife Martha and me, and I suspect it’s true for many. You’ll have to decide if it is for you.

                     My hometown library

                     My hometown library

Reflecting on this theme, and depending on the allotted time, I explored with these groups three of our family’s experiences, which you may recognize from earlier posts:

This is one of the first questions I was asked: You said you got advice early on to be gentle with yourself, which you found so difficult. Why was it difficult for you?

My response: First off, I’ve been driven much of my life by an obsession that I now perceive to be a disease called “perfectionism.” If I didn’t get something right, I often beat myself up. And a volatile issue like Alzheimer’s can drive even the healthiest of caregivers nuts. As soon as some stability appears, the floor can drop out from under you. This is why I keep saying to fellow caregivers, “If you truly want to take care of your loved one, you must first learn to take care of yourself.” It’s not easy. In fact it may be the hardest lesson a loving caregiver must learn; it seems so counter-intuitive.

Echoing my perfectionist tendencies, Martha and I were told by the nun we visited in Kentucky: “You might want to explore the difference between willfulness and willingness.” It took me a long time to understand that difference. We both were stubborn and we operated in willful enterprises, Martha in politics and I as an entrepreneur publishing a magazine.

These are a couple of the reasons that it finally dawned on me that I needed to be healed in my own way as much as Martha did in hers.

Question: Much of your experience described in your book brings out the skeptic in me. Nonetheless, I’m intrigued.

Answer: We were told by the medical community that there’s no hope with Alzheimer’s. Were there some chance of recovery, or at least some protracted delay of the symptoms, I doubt my readings would have been as far-reaching or our contacts and encounters as diverse. But when you’re desperate to find a way out of your dilemma you’ll do almost anything and go almost anywhere. By exploring the medical and spiritual outposts described in my book, I learned this about myself:       I truly grow only when I step outside my comfort zones.

     Sharing our story at the Alzheimer's Tennessee conference

     Sharing our story at the Alzheimer's Tennessee conference

Q: Are you saying that you can damage your health by carrying resentment and not forgiving someone?

 A: I’m saying it can increase the odds of that occurring. I first heard such 2+2=4 logic from my mentor, the late Canon Jim Glennon, an Anglican priest in Sydney, Australia. Resentment and fear, he told me, often are drivers of stress. He learned this the hard way through his studies and personal experience. And medical research is bearing him out today as it reveals ever more clearly how long-term stress can damage our immune system. Until diving deep into Canon Glennon’s teachings, I’d always thought of forgiveness as a nice religious virtue that I could do at a time and place of my choosing, whenever it was convenient for me.

No more.

While listening to Canon Glennon’s tapes, I was reminded of this startling statement by Frederick Buechner in his book Wishful Thinking: “Of the Seven Deadly Sins, anger is possibly the most fun. To lick your wounds, to smack your lips over grievances long past, to roll over your tongue the prospect of bitter confrontations still to come, to savor to the last toothsome morsel both the pain you are given and the pain you are giving back—in many ways it is a feast fit for a king. The chief drawback is that what you are wolfing down is yourself. The skeleton at the feast is you.”

Ouch! Suddenly the importance of forgiveness hit me square between the eyes. And Martha and I began to work on our long-held resentments. I learned quickly enough the importance of not only forgiving those who hurt me through the years but also of forgiving myself of failed efforts long past as well as for my failures in caring for Martha. That’s what I mean by being gentle with myself.        

Q: How did your children react to their mother’s illness?

A: I don’t have time to go into detail here; I do devote a chapter in my book A Path Revealed to their responses. Nonetheless, our children gave me the greatest gift possible—a weekend a month off while they stayed with their mother; I usually went to a nearby monastery. I believe our children today support each other more than they would have otherwise. Not that I would wish such a crisis on anyone in order for the adult children to get along.

~~~~~~~~~~~~~~~~~~~~~

The more I’ve talked with groups, the more I refer to our 17-year struggle with Alzheimer’s as an odyssey rather than a journey. The word “journey” feels too tame. It feels to me like you’re walking easily along a path toward some planned destination.

An “odyssey” in its classical sense begins when you find yourself lost in an alien land—hurt, scared, and confused. You want to get back home; you’re desperate to get home. You’ll risk almost anything to get there, you’ll endure almost anything. And you will experience things never before imagined. When you do get home, you realize that home is not the same place as when you left. Nor are you the same person. That better describes the path traveled by Martha, our children, and me.

I’ll close with this observation that I shared with the groups in Tennessee: Twenty years ago Martha turned 50 and within three weeks was diagnosed with early onset Alzheimer’s. After all we went through since that diagnosis, I now understand that there’s a vast difference between believing in God and in believing God. I’ll be chewing on that insight the rest of my life.

Thank you. It’s good to be back.

Carlen
www.carlenmaddux.com
carlen@carlenmaddux.com

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P.P.S. My book, A Path Revealed: How Hope, Love, and Joy Found Us Deep in a Maze Called Alzheimer’s, can be found on Amazon or ordered from any bookstore.