Speaking Falsehoods to Power – Our Dementia Story. My husband is a charming man. I had no intention of remarrying before I met him. Tried it. Was miserable. My late Grandma’s wisdom spoke to me as it has so often. “Not for you” she said. Then there was Jonathan. The rest is a fifty-three-year story that began with his blue-eyed smile in 1972.
Nobody Wants a Dementia Diagnosis. Any of us would most likely use just about any means necessary to avoid hearing those words or reading those test results or facing those prospects. Jonathan’s means of avoidance was his charm.
My Wife Says I Forget Things. Do you know a single wife who does not contend that her husband forgets things? “My wife says I forget things.” That is what Jonathan told his young doctor. Then he smiled. Then they shared a chuckle.
We Needed a Referral for Testing. Jonathan’s charm target was our gateway to a world class neurology staff a half-dozen blocks from our home. We already had strong connections there. Jon would be treated as an individual instead of a case file there.
Early Detection was Crucial. The faster the professionals identify a disease the better it is for the patient. This is definitely true of dementia. Brain scan. Blood tests. Whatever they have in their diagnostic kitbag as ASAP as possible. Too bad Jon’s lifelong characteristic deployment of the dimples did his trick. His doc deemed no follow-up necessary. So much for ASAP at our nearby facility.
Finding a New Facility was Crucial. We live across the East River from Manhattan. I would have to search there. Lots of world class places. Huge. Formidable. Complex places. I was duly intimidated but waded in anyway. Across the river and into the medical bureaucracy.
Getting their Attention was Crucial. I faced a wall that seemed impregnable to me. A cheek-by-jowl array of massive structures and impersonal systems. These were the adversaries I was about to confront. I stared at that wall and felt myself shrink in significance by the second. Would they even notice me – much less hear my story?
Frustration Maximized my Motivation. It took hard-fought months to get into one of those massive facilities. On appointment day a waiting line overflowed the reception area into the lobby. It took nerve racking hours to get a brain scan scheduled. Too bad they could not fit us in for several weeks more. We needed a reroute back to the human dimensions of our neighborhood.
Sling Shot Time. I was no match for the powerful arm of the big city medical establishment. I could feel the fist at the end of that arm clenched above me. I could foresee that fist pounding my insignificant self and our predicament to bits. David had a sling and some pebbles to wield against Goliath. I had my will and some wiliness.
I Began to Obfuscate. I cannot say I lied. Grandma is up there listening. She would return from her resting place and rebuke me for a lie. Obfuscate is a safer term for what I did from then on with almost every gatekeeper I encountered. Never in person. They could not see my trembling limbs and terrified eyes as I was Speaking Falsehoods to Power – Our Dementia Story.
I Obfuscated Creatively. First I only faked a doctor referral – or maybe two. Next I pretended to be a doctor’s assistant. Altered my voice to sound medical. I guessed my ruses might be most effective at the end of the day when folks were tired. I did what I believed I had to do and it worked. Jonathan’s brain scan happened ASAP and where we needed it to happen. A half-dozen blocks from home.
I Never Got Over Being Terrified of Goliath. I was certain the powers that be would discover what I was doing. I told myself my motives were right and righteous. My beloved husband needed help as fast as we could get it. Nothing must stop that. Not my own trepidation. Certainly not the possibility of sanctions by my bureaucratic betters.
Jon’s Brain Scan Diagnosed Dementia. Treatment began and has proceeded positively so far. We focus on the hopefulness of that and on how much we love each other. Grandma is with us. She kisses the top of my head like she did when I was a little girl. She understands why – when necessary – her bigger girl will be Speaking Falsehoods to Power – Our Dementia Story.
LESSON LEARNED – GET YOUR LOVED ONES WHAT THEY NEED AND DESERVE. Remember David. Find yourself a sling. Drop your determination into it. Steady your knocking knees. Take your shot.
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You possess storytelling magic. Keep on writing whatever may occur. AliceOrr https://www.aliceorrbooks.com
Alice Orr is a number of things. Teacher. Storyteller. Former Editor and Literary Agent. Author of 15 novels, 2 novellas, a memoir, and No More Rejections: 50 Secrets to Writing a Manuscript that Sells. She also blogs for writers and readers at https://www.aliceorrbooks.com.
Alice’s Memoir is titled Lifted to the Light: A Story of Struggle and Kindness. At the beating heart of this moving story a woman fights her own disease disaster. All her life she has taken care of herself. Now she faces an adversary too formidable to battle alone. An inspiring read available HERE.
Praise for Lifted to the Light: A Story of Struggle and Kindness: “I was lifted. I highly recommend this book as a can’t-put-down roadmap for anyone.” “Outstanding read. Very, very well written. Alice Orr is an amazing author.” “Honest, funny, and consoling.” “Ms. Orr is a fine, sensitive author and woman. I have read other books by her and am glad I haven’t missed this one.” “Couldn’t put it down.”
All of Alice’s Books are available HERE .
Ask Alice Your Crucial Questions. What are you most eager to know? About Alice and Jonathan’s experience? About telling your own stories? Ask your questions in the Comments section at the end of this post. Or email Alice at aliceorrbooks@gmail.com. She would love to hear from you.
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