Why Stories Matter
By JoAnn Franklin
Do you know how a refrigerator works?
If you answered yes, which most of us would, explain it to me please — in detail.
Did you start to stutter, to stammer, to act on the urge to not read further? If so, you’ve experienced an inaccurate but powerful feeling of knowing that researchers term the illusion of explanatory depth.
In researching frontotemporal dementia for my novel, Bring the Rain, the case studies I read had one thing in common. The caretakers thought they understood what was happening with their loved one, and they made decisions based on that illusion that they later regretted.
Personally, although I don’t have any experience with FTD, I know what living with my own misjudgment feels like. When I was five, my mother suffered a psychotic break. The misdiagnosis was bipolar. Decades of research later, I believe the real culprits were post traumatic syndrome from the war, postpartum depression, social isolation, coupled with the stress of bearing and caring for three children in five years plus an interfering close relative who made her life miserable.
Our relationship and my mother’s life would have been much different had I understood what she endured.
When I first stumbled onto FTD it was because of a friend. After several years of not knowing why she fell, why one leg grew weaker, why both legs didn’t work, she learned she had ALS. I started to research the disease, and I found a link between ALS and FTD.
FTD was fascinating when I read the headlines, the science. It’s one of the few diseases that changes personality and the morals and beliefs that drive decision making. Then I delved into the case studies and stumbled into my own bewilderment, regret, and that common phrase, “If only I had known.” Clearly, I was suffering from the illusion of explanatory depth.
After that, I didn’t have a choice. Through the power of story, I could bring awareness about FTD to a broader audience. So I tapped those emotional ghosts I carry with me from childhood, and I gave Dart a fighting chance. Not to beat the disease, but to tap courage, determination and resilience to get up each morning and finish what she started, knowing that she probably wouldn’t make it. I also gave her a lover who understood and wanted a second chance himself. Ash knows there’s a lot of life to be lived between diagnosis and death.
Humanity has a long history of thinking we understand mental illnesses, aging, how the brain works, what keeps it healthy, but consuming knowledge is different than confronting its complexity. FTD is a very “real” disease that robs people of humanity. It can also leave the caregiver with guilt, sadness, dismay, and regret. My hope is that Dart’s story will deepen your awareness.
About the Author
JoAnn Franklin is a former educator who lives on the North Carolina coast with her husband and the occasional hurricane.
Website: www.joannfranklin.com/
Facebook page: www.facebook.com/joann.franklin
Twitter: @jfranklinwriter
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