Tag Archives: Inspiration

Ponder the Preciousness – Our Dementia Story

Dementia Story, , , ,

Ponder the Preciousness – Our Dementia Story. Once Upon a Time – on a day just past fifty-two years ago – I was too harried to be nervous. The next several hours were my wedding gift for my husband-to-be. My Jonathan. I had kept it all a secret. He had no idea what was planned.

A Hundred Details were Yet to be Addressed. I had made many lists as always. Thank heaven for that because soon our little house on Burnup Road in Black River, New York would be overrun by my women friends impatient to take charge .

Ours was a Homemade Wedding from the Start. This day would be everything my previous marriage that crashed and vanished had never been. No upscale impressive venue. No silver embossed matchbooks. Only the golden-hearted efforts of our precious personal community.

The Cake was Baked by a Relative’s Roommate. The turkey and ham were from the ovens of our mothers in law. Hors d’oeuvres and salads were concocted in our own kitchen that very day by a sisterhood of strong women wielding vegetable peelers and powerful opinions.

The Sisterhood Forced Me Out Eventually. I had found my nervousness and was causing too much fuss. Off I went with a bridesmaid to be gowned in hippie homespun still waiting for a hem and soft slippers to keep my clumsy self from stumbling down the aisle.

I 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 can remember every step we took. To this very day – I Ponder the Preciousness – Our Dementia Story.

I Designed the Ceremony to Reflect Our Love. Still, what happened that day astonished even me. Thanks to the passion of the players. A profound reading from a beloved 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.

Also Surprises I had not Planned. My son created beautiful baskets of wildflowers and roses for my bridesmaids. A vintage Cadillac at the church door whisked us away to our Burnup Road reception. Coworkers had filled our bathtub with ice and champagne bottles.

All Day Long Memories were Born. Moments that caught in our hearts. Moments to split your seams with laughter. Moments bathed by tears. Moments as sunlit as the yellow rose bouquet I never tossed to anyone because I could not bear to let it go.

We have Lived a Half-Century of Memories Since Then. Adventures. Struggles. Triumphs. Disappointments. Joy. Astonishment. Regret. Celebration. Tragedy too because our Once Upon a Time has been reality not fairy tale. Now we Ponder the Preciousness – Our Dementia Story.

LESSON LEARNED – Perpetually ponder every preciousness.

**********

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.

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

No Secrets Please – Our Dementia Story

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.”

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.

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

 

 

Speaking Falsehoods to Power – Our Dementia Story

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.”

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.

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