Reticence
An unexplained inner drive compelled me to document a multi-year sojourn that I took with my parents. It was the last journey we took together…a journey down the rabbit hole of dementia. Within months of each other, Dad received a diagnosis of Parkinson’s-related dementia and shortly thereafter, Mom, with Alzheimer’s disease. During the first year, I began a diary to record our odyssey. Journaling every evening helped me unwind and release some of the turbulent emotions involved with the day-to-day challenges we faced. This journal became my confidante to whom I could “say” anything without fear of reprisal and it asked for nothing in return. It simply listened.
As time passed, an idea quietly germinated in my subconscious, leading to a growing awareness that my experience might be helpful to others walking the same road. With that realization, my diary morphed into a manuscript and I began to consider pursuing publication. With a bit of wariness, I shared the manuscript with a few close friends, who offered positive feedback and encouragement. Then something unexpected happened. I developed a severe case of reticence. How could I expose our family to the public’s scrutiny, unveiling all the foibles and missteps? How could I expose the frightful truth about Mom’s precipitous decline? Even worse, if I moved forward with publication, I risked alienating my only sibling and perhaps his family, in my honesty about his lack of involvement and emotional support. When my best friend from childhood intimated that I would be “dishonoring” my parents if I were audacious enough to seek publication, her comment completely knocked the wind out of my sails. That did it. I chastised myself for even considering unmasking our family in such a callous way. The story was simply too private and I certainly did not want to dishonor my parents’ memory in any way, shape or form.
The manuscript languished on my computer hard drive for nearly 3 years. A tiny inner voice, however, refused to leave me alone. Now and then, it spoke to me, in various iterations: This narrative might be able to offer hope to others! Or: You know you learned a lot of lessons along the way that might help others from making the same mistakes. Why won’t you share them? Or: This story has so many ideas for coping, plus you could add information from experts to make it even more useful. Or: What if you lightened another’s load, letting them know that they’re not alone on a difficult road?
Eventually, I could no longer deny that voice, so I listened. I moved forward with editing, found a publisher and shared my story. Nine long years after I began my diary to cope, my diary of hope, Somebody Stole My Iron: A Family Memoir of Dementia was born.
Let’s not keep secrets any longer. Join us during June, Alzheimer’s and Brain Awareness Month. Speak out.
