winter solstice

Back in 2017, I started telling the story of my journey with Gary on this blog. My posts were few and far between because the demands of caregiving left little time for writing, editing, illustrating and posting. But I discovered a storytelling medium that worked for the tiny pockets of time available to me. That, to my surprise, was a TikTok page I called welcome2garyland. 

I began posting videos in August of 2021 and found a community of wonderful people who supported Gary and me as we dealt with the terrible progression of Lewy Body Dementia. I will forever be grateful for their love and encouragement during those difficult years.

Gary passed away in May of 2022 and my TikTok friends have continued to support me through my grief and healing. Many encouraged me to write my story into a book. And I have taken up the challenge! The book I am writing is fiction—a novel that will include elements of my lived experiences. 

I am practicing now in an online class, with the story of Carole and Eric. I will share some of the pieces that I’m playing with here. I can’t wait to see how this unfolds — and to hear your comments! Here is my first piece…

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Winter Solstice is the time when light is born
out of the womb of winter’s darkness.

                                                                     — Mara Freeman, Kindling the Celtic Spirit

As Christmas approached Carole fretted. She knew she didn’t want this year’s pandemic Christmas to unfold like pandemic Halloween. In Halloweens past Eric would don his Einstein wig and announce to every trick or treater, “I’m a genius!” This year would be different she told him. She thought he understood; but his understanding was short lived. “We missed Halloween,” he said sadly. “We missed it.”

Carole winced. Why hadn’t she tried to create something for him—a pretend Halloween? He wouldn’t have known the difference.

With Christmas, she would not make the same mistake. Although there were no plans for travel, family meals, or gift exchanges—she was going to make sure that Eric would feel the spirit of the season.

On Solstice morning Carole woke ready to decorate. Eric was no help. Difficult mornings were starting to be the norm. Dr. Jefferies said Eric was entering a new stage. “Dementia is different for each person,” she said. “I can’t be specific about how it will unfold for you.” Carole sighed, knowing she’d have to figure it out for herself—starting with how to calm Eric enough to get him dressed each day without anyone getting hurt. 

Carole entered his room with clean pants, socks, jacket, and one of his favorite tees, saying cheerfully, “Let’s get dressed!” 

“We already did that,” he growled. 

Carole backed up, set the clothes down and picked up the remote. “What movie do you want to watch?” she asked. There was no point in arguing or cajoling.

“Alice,” he said. Carole hit “Play,” sure the DVD was already queued. She left Eric happily watching Johnny Depp meet Alice in Wonderland for what seemed like the 1000^th time. She began unpacking ornaments. Every half hour or so, she reentered Eric’s room.

“Hi honey! Let’s get dressed!” she chirped.

“We already did it.” 

As the morning waned, Carole considered a new approach—bribery. She came into Eric’s room where he sat fixated on the screen, now grey and ominous with the beginnings of Alice’s final battle with the Jabberwocky.

“Hey honey!” interrupted Carole, “Let’s get some take-out Mexican for lunch!” 

“Mexican?” repeated Eric, looking a bit excited. He stood up and headed toward the door. 

“We need to get dressed first. Here, let’s take off your shirt.” Carole faced Eric and gently pulled his shirt over his head. The TV flashed purple as the dragon breathed electric fire. The music grew louder, faster, and more intense. Carole grabbed the Old Spice and motioned toward Eric’s armpit. “Deodorant,” she said, squirting one side and then the other. 

The dragon roared. Carole picked up a fresh shirt. Eric pushed her away. “I don’t want that one!”

Carole turned and reached for a bright tie-dyed tee. “How about Woodstock?” Eric nodded and Carole quickly threaded his arms and head through it before he changed his mind. Carole removed Eric’s pants. He sat down hard, bare-bottomed, in his chair. 

Alice fell, her sword scraping loudly across the pavement. 

Eric bent over to grab his shoes. In a flash, Carole kicked them out of reach. “We need pants first,” she said. 

The music swelled. Alice ran up the steps. 

Carole grabbed Eric’s socks, shoes, pants, and jacket, putting them on in rapid succession. Alice descended upon the Jabberwocky, “Off with your head!” she cried, and the head fell bump, bump, bump down the stairs.

Carole zipped up Eric’s jacket and heaved a sigh of relief. The battle was over. “Let’s go!” she said.

After lunch Eric settled into watching Alice again. Carole turned on Christmas jazz in the living room and began draping gold garlands swag-like above the windows.  She assembled the Christmas tree and added tiny white lights. As a final touch, she carried in a large ash log from the wood pile. She placed the log in the fireplace and lit the fire. “Thank you,” she said, conjuring up an image of the tree, “for giving us this Yule log! May the burning of it set the sun free from the darkness. May the light return!”

Eric emerged from his room. “Just in time,” thought Carole. “I’ll ask him to help me trim the tree.” She was about to speak, but something about the look on his face stopped her. She watched him approach down the long hallway as if in slow motion. When he reached her, he brought her into his arms and kissed her. Deep and long—a kiss of the lover he had been to her for so many years. She melted into him. This was her Eric, returning to her, loving her, reminding her that even through the darkness of his illness, there was still a light burning between them.