Tag Archives: Inspiration

No Secrets Please – Our Dementia Story

No Secrets Please – Our Dementia Story. My mother was mentally ill. Her dis-ease displayed itself in many ways. Rage and violence at one end of her emotional spectrum. Fear and brooding at the other. Everyone could see her tortured extremes. No one said a word about them.

I Remember our Family Doctor Visiting my Father. Doctor Benny was a man who could be harsh in his pronouncements, but that day he was a gentle mentor. He told my father that my mother needed help and what kind of help that should be. My father flew into one of his own rages and sent Doctor Benny away.

The Family Secret was Saved but My Mother was not. She remained imprisoned in the fearful darkness of her affliction. She remained shut away from possible relief as surely as if she were locked up in a backroom and the key had been thrown away. We remained imprisoned with her – all afflicted by secrets and silence – all denying the truth in front of our eyes..

Openness would have Released Us from Our Prison. Openness would have allowed light into our mutually occupied backroom. Instead, we suffered in the dark, our mouths sealed by shame, our hearts clutched by fear. Secrets held us captive – my mother most mercilessly of all. What a gift it would have been if someone had spoken the truth.

Jonathan and I have Chosen an Open Road. We make no secret of his dementia. Our families know. Our friends know. We know. You know. There are no secrets here. No locked rooms. No silence. No shame or embarrassment or even sheepishness. We have freed ourselves from all of that. Jonathan most fully of all. No Secrets Please – Our Dementia Story.

Not Everyone is Comfortable with Our Openness. When the subject of dementia arises, some people quickly change the subject. They are discomforted. Sometimes they fawn over Jonathan as if he were a wounded bird. Sometimes they turn away. Sometimes they disappear altogether.

Those who Turn Away are Themselves Afflicted. They are afflicted by fear. They are afflicted by the images broadcast on television. Images designed to create a panic and sell outrageously expensive pharmaceuticals. Those who turn away are more comfortable with the secret. We are more comfortable in the light.

I Remember that My Mother Almost Never Smiled. I never saw the smile in the above photo in real life – not that I can recall. I think about how alone and lonely the mother I did see must have been. I remember how alone and lonely we all were. We were isolated in the darkness – the dark backroom closet of our silence and our shame.

The Only Antidote for Darkness is the Light. In light we experience the dawn. In light a smile breaks through our fears. In light shines the love that frees us all. In the light my mother might have embraced the dawn – regained her smile – been at least a bit more free. No Secrets Please – Our Dementia Story.

LESSON LEARNED – LET THERE BE LIGHT.

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.”

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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Speaking Falsehoods to Power – Our Dementia Story

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.

Grandma and Alice at Two and a Half

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.

**********

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.”

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.

http://facebook.com/aliceorrwriter/
http://twitter.com/AliceOrrBooks/
http://goodreads.com/aliceorr/
http://pinterest.com/aliceorrwriter/

 

 

 

The Writer and Her Handsome Prince

The Writer and Her Handsome Prince. Once upon a time – 50 years ago this coming Friday –  I was too harried to be nervous. The next many hours would be my wedding gift to almost-husband Jonathan. He had no idea what I had planned.

A hundred details were yet to be addressed. As always I had made many lists. Thank heaven for that because soon our little house on Burnup Road would be overrun by my womenfriends impatient to launch the day’s events.

This was a homemade wedding from the start. Everything my previous marriage that crashed and burned had never been. No silver embossed matchbooks here. Only the golden-hearted efforts of our community of friends.

The cake baked by someone’s roommate. Turkeys and hams from the ovens of our mothers in law. Hors d’oeuvres and salads concocted in our own kitchen by my sister social workers as the sink filled up with veggie peelings.

They forced me out of there eventually. Off with a self-appointed gaggle of girlfriends to be gowned in hippie homespun still waiting for a hem. My long hair was straight as usual until they advanced on me with curling irons. The brocade slippers on my feet were supposed to keep me from stumbling down the aisle.

I honestly cannot remember getting to the church. Jonathan and I walked to the altar together. Nobody owned me so I did not need to be given away. Neither did he.

I had designed the ceremony to reflect the depth of our love. Still, what happened that late afternoon astonished even me because of the passion of the players. A profound reading from a beloved literary friend. A soulful song composed and performed by my brother. An inspired blessing by a former priest in flowing robes. Jonathan reveled in everything as I had hoped he would.

There were surprises also that I had not planned. Gorgeous baskets for my bridesmaids created by my young son from wildflowers and roses. A vintage Cadillac at the church door to whisk us away with wild applause as a sendoff. A bathtub filled with ice and champagne bottles by our work place friends for our Black River house reception.

All day long enough anecdotes were born to feed a lifetime of memories. Moments that caught in our hearts. Moments to split your seams with laughter. Moments bathed by tears. Moments as sunlit as the bouquet of yellow roses I never tossed to anyone because I could not bear to let it go.

I have written thousands plus thousands of words since then. But this is the first time I have written about that day when we were so very brand new. When I was yet to write anything much at all and Jonathan was yet to become my great encourager of every page that followed.

Meanwhile 50 years of real-life stories have been lived. Adventure. Struggle. Triumph. Disappointment. Joy. Astonishment. Regret. Celebration. Tragedy too because our long time together has been reality not fairy tales after all. Yet to this day we blessedly remain – The Writer and Her Handsome Prince.

Alice Orr – https://www.aliceorrbooks.com.

ASK ALICE Your Crucial Questions. What are you most eager to know – in your writing work and in your writer’s life? Ask that question in the Comments section following this post. Share your writer’s journey and inspire future posts.

Alice has published 16 novels, 3 novellas and a memoir so far. She wrote her nonfiction book No More Rejections: 50 Secrets to Writing a Manuscript that Sells as a gift to the writers’ community she loves. Her  novel – A Wrong Way Home Riverton Road Romantic Suspense Series Book 1 – is another free gift for you HERE.

A Wrong Way Home

Praise for A Wrong Way Home: “The story twists and turns masterfully into danger and romance.” “I highly recommend this page-turner which is romance and suspense at its best.” “The writing is exquisite.”

Look for all of Alice’s books HERE.

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