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To Tell or Not to Tell: Secrecy and Privacy

To Tell or Not to Tell: Secrecy and Privacy

Guest blogger Cheryl Kingston of Los Angeles, California has lived with Parkinson’s for 23 years and uses humor and creative writing to share her personal experiences.

A few months ago, I had a surprise reunion with Babbette in the neighborhood’s Ross Dress For Less clothing store scouting for Speedo markdowns.  

We had met years ago, as swim junkies at our local Y. And over time, our locker room banter fostered a guise of intimacy. Though we were veritable strangers, we shed our vulnerabilities and established a trust that our secrets be honored, and privacy respected.

In truth, we were in part keepers of one another’s stories in a profound yet superficial way. This female assembly was a safe refuge for sharing rites of passage, milestones, journeys, gibberish and simple tales of life on Planet Earth. Yet, I never revealed my diagnosis of Parkinson’s disease (PD) to her.

But as I rummaged through the wasteland of discount swimsuits, I was caught off guard in an awkward moment. I realize that Babette, a paragon of dignity and grace, held a three-pronged cane for balance. I instinctively braced myself for the fate she’d soon reveal.

Coming closer, moving into my space, as was characteristic of Babbette’s engagement, she blurted out her secret.

“I was diagnosed four years ago with MS (multiple sclerosis). I, for a period of time, was in a wheel chair; this walking stick enables me to negotiate these merchandise-strewn aisles more easily and gives me options, mobility and independence.”

I cringed. I felt trapped. And after 15 more minutes, I was feeling warm, claustrophobic and dizzy.

But perhaps more troubling than my involuntary detainment was Babbette’s abiding acceptance of her prognosis, her seeming acceptance of this fate as “signed, sealed and delivered.”

Her condition now defined her. Lost was her admired professional identity, her enticing flamboyance and her impressive creativity. In contrast, the elastic waistband generic jeans and supportive common sense Oxfords she wore now were unsettling. I resisted any urge to share my own diagnosis story.

Babbette is now driving a manually controlled vehicle and researching other adaptive technologies. Her commitment to the lines in a Tennyson poem, “To strive, to seek, to find, and not to yield” is inspirational. 

Despite Babbette’s candor, I am more resistant than ever to not go viral with my PD. I rationalize perhaps because when I was diagnosed some 23 to 24 years ago, “pre-existing conditions” created hardships for those unable to secure reasonable healthcare. But the truth is, at times I still want to keep my own secrets. 

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