You Don’t Need a Partner to Dance: The Power of Personal Writing

Recently I heard author Jill Lepore speak at the KC Public Library. During the Q and A session, someone asked, “Jill, you’re a staff writer for the New Yorker. How did that happen?”

“Well,” said Jill, “you know those cheesy old paintings where the hand of God reaches down through a cloud? It happened like that.”We all have those “hand of God” moments. For me, one such moment was when my friend, author Bernadette Stankard, suggested I send my book to her publisher, Central Recovery Press. I did and they were instantly interested. Just last week, I received the beautiful new edition of Love in the Land of Dementia: Finding Hope in the Caregiver’s Journey. Soon available, as they say, in “bookstores everywhere.”  

So many hands, human hands, have helped me edit and shape this book and I am grateful to each person who contributed ideas and insights. I am also grateful that I gave myself permission to write these stories.

For me, writing is about learning to dance on the page.

While I write, I picture a woman living in a trailer in North Dakota.  In the evening, she sits in a brown living room, her husband in a lounger watching television, her son sprawled on the floor doing homework.  She picks up my book and is transported, connected to the deeper parts of herself.  When her husband asks, “Why are you crying?” she hands him the open book. The noise of the television blurs as he reads.

“You’re not really a writer until you’ve been published,” a journalism professor once told me.

The more I write, the less I believe him

The tender manuscript goes out, primped and dressed up, clean and on good behavior, ready to meet the right editor. The process of getting published is akin to looking for love: a blend of alchemy, philosophy and fate. For every one of my stories that unfurl themselves in the pages of a magazine, I have a stack of shy sisters, waiting to be invited onto the dance floor so they can reveal their billowy brilliance.

I invite myself out onto the dance floor. 

Last week, I received four pieces of mail that weren’t from major utility companies. I knew from the solemn brown of the envelopes that three were rejections. One was a card. Like a good child swallowing medicine before eating cake, I opened each rejection. Two were forms. The third said, “Gee, good story. My ex-girlfriend is also from Kansas.”

The card was from the daughter of my dear friend, who had recently died. As a way of sorting through my own grief, I’d written her daughters a letter, describing how much I admired their mother.

“Dear Deborah,” her daughter wrote me now, “Your letter meant so much to our family. I made copies for my sisters and we are carrying them around in our purses. I read the letter to my cousin in Texas.  We both cried…”

As I read this card, my stack of rejections grew insignificant. I remembered why I want to write: simply, to connect with people.

Advertisement

Six Tips for Surviving the Holiday Season When a Loved One Has Dementia

Normally, Thanksgiving was my favorite holiday, a time our family gathered together at my Kansas City home. But that November, my stomach clenched at the thought of our traditional Thursday evening meal.

My mother had Alzheimer’s and the holiday would be different.  I felt alone but of course I wasn’t: there were 15 million family/friend caregivers helping the five million Americans who have dementia.

I’d been through my initial storm of denial and grief. I felt I’d been coping well with Mom’s diagnosis, focusing on offering my father extra support and trying to flow with Mom’s now spotty memory and personality quirks. But a pre-season sadness invaded me in October and I found myself dreading the alleged festivities. How could we have our usual holiday dinner, take our after dinner walks, play Scrabble and Hearts and Charades without Mom’s participation?  How could we enjoy going to movies and plays when Mom was having trouble focusing and sitting still?  And how would Mom react to the situation: would she feel uncomfortable and out of place? Would Dad feel protective and anxious? And more important, what would we have for dessert! Mom was legendary for her chocolate and butterscotch brownies, date crumbs, and bourbon balls. No store-bought cookies would compare. 

As I stewed over the prospect of a depressing Thanksgiving weekend, I remembered the vows I had made: I had promised I would try to stay connected to Mom throughout her Alzheimer’s journey. And I had promised to see the gifts and blessings and fun in the experience.

So I began thinking: if the holiday is going to be different, why not concentrate on making it different in a creative and connective way? Here are some ideas I used to make the holiday work for me.

• Acknowledge my feelings of loss and grief. I wrote them down and shared them with a few friends. Just expressing myself made me feel stronger.
• List what I would miss most during the holiday season. My list included cooking with Mom, eating her brownies and rum balls. I asked my brother, who’s a terrific baker, to make some of our favorite sweets and I set up a place in the dining room where Mom could sit next to me while I chopped mushrooms and peeled potatoes.
• Create an activity to give our holiday a new focus. We created a simple holiday scrapbook called, “The Little Kitchen that Could,” complete with a family photo shoot and a playful script.
• Appreciate my blessings. We started our Thanksgiving meal by asking everyone to name one thing he or she was grateful for. I continued my gratitude practice throughout the holiday season, either alone or with others via telephone and social media.
• Take extra good care of myself.  I treated yourself as I would a friend who’d suffered a deep loss.
• Set up a lifeline. “I’m worried about melting down,” I told my friend. She urged me to call anytime for encouragement and reassurance.

These six steps helped me enjoy my holiday and appreciate my mom just as she was. Our holiday was “different” but it was also wonderful.

*****

Q 4 U :   How have you adapted your holiday expectations?

Four Ways to Acknowledge Loss: Seeing What’s Left in the Empty House

The scary house is gone. My grandson Robert, age two-and-a-half, stares forlornly at the ordinary-looking yard, unable to quite take in the transformation. 

For the three weeks leading up to Halloween, this lawn was one of Robert’s favorite haunting places. Our neighbor created a spooky graveyard, complete with a turning black-robed ghoul that twisted its sinister head to glare right at you, a skeleton that popped up from behind a tombstone, a gargoyle with evil red eyes that crouched menacingly on the porch roof, a wicked looking fence, a tower with a secret compartment that housed a pulsing corpse, and a blue-eyed ghost that floated mysteriously in the background. The first night Robert saw this spectacle, he held tight to his grandfather’s hand and stared. He didn’t want to get too close and he didn’t want to leave; he watched from a safe distance and noticed everything.

Even in the daylight, Robert didn’t want to get too close. But he was captivated by all the scary activity and he loved sitting across the street from the house, waiting for a car to drive past so the “up and down” man behind the tombstone would thrust upwards and surprise us. Every day that I picked him up from school, he asked to go to the scary house. This normally racing, spinning, bouncing boy would then sit still and we  discussed the gargoyle, the ghoul, the crow, the pumpkin, and more.

But today, the day after Halloween, the yard is mere grass. Robert holds my hand and we talk about all the creatures that were there, just yesterday. He notices the indentation the tower made in the grass and stands in that spot. He is sentinel-still and solemn, trying to understand this great and sudden loss. Then he points, excited. “The ghost.” he says. The ghost is still hovering on the screened-in back porch. The ghost is Robert’s favorite and we are both very glad to see him. When we finally have to go, he waves goodbye to the ghost, content that at least something is left.

As we walk home, I think about some of my own “scary houses,” things that both intrigued and frightened me. My mother’s Alzheimer’s was a terrifying mansion.

I remember visiting the Alzheimer’s Association and having the social worker show my father and me a picture of the brain with advanced dementia. After I returned home, I wrote about my feelings, saying, “ I look around my living room and imagine a man walking in and silently removing the sofas. No comfortable way to sit down. Another man comes in and takes the coffee table. No place to set down a teacup. One person removes the pictures and lamps, another hauls out the books. I imagine the room stripped down to its original emptiness.

“My mother is going to lose everything,” I say aloud, hearing my voice echo in the imaginary emptiness  …

Then I remember walking into my house before I bought it, and falling in love with the emptiness, the scarred wooden floors, the wide-open space, and the plain cream-colored walls. Even without any of the comfort and familiarity of furniture, the rooms had their own beauty.

I close my eyes and imagine that beauty. I pray I will have the courage to discover who my mother is, day by day, and to love her as her new emptiness unfolds.”

Robert knows just how to take in his loss: stand still, take your time, remember everything you’ve lost and then appreciate what is still there.

As for my mother, even though she’s passed away, she never “gave up the ghost.” She’s still here with me.

An Insider’s Look at True Love: Charlie and Elizabeth’s Story

Every week, I interview couples and write their love story for the Kansas City Star. Every story is different and talking to people who are in love is always inspiring; often couples have to overcome enormous obstacles to bring their relationship into reality. A few days ago, I talked with two friends whose love and cosmic connection shone out from their faces and rang out with their words. I wanted to share this small part of their story with you.

**
The coffee date was going better than Charlie, age 60, could have ever imagined. Just a month earlier, his best friend had burst into Charlie’s dark apartment and roused Charlie from his lethargy, saying, “You need to open up these windows and let some light in. You should start dating.”

“Who would go out with a guy who has Early Onset Alzheimer’s?” Charlie asked his friend.

“Maybe you should find out,” his friend replied.

So Charlie Miller pried himself out of his depression and joined eHarmony. And this coffee date with Elizabeth Hack was the result.

Elizabeth, age 55, was brilliant, interesting, energetic, curious, and shared many of Charlie’s interests. When she asked Charlie what he liked to do, he mentioned listening to music, attending theater, visiting with friends and volunteering for the Alzheimer’s Association.

Elizabeth knew nothing about Alzheimer’s. She asked, “Does someone close to you have the disease?”

“Yes,” Charlie answered. He wanted to say more but the words stuck in his throat. He had never envisioned this casual meeting could possibly turn into a romance. Yet he was already comfortable with Elizabeth and felt their relationship was meant to be.

Over the weeks, they continued seeing each other, meeting at concerts, going to plays, and exploring new restaurants. As their friendship deepened. Charlie knew he had to share his diagnosis with Elizabeth and he worried she wouldn’t be able to accept it.

But before he had a chance to broach the subject, Elizabeth, wanting to learn more about Alzheimer’s and about Charlie’s interests, visited the local Alzheimer’s Association website and noticed a picture of Charlie, as a volunteer and a person who has Alzheimer’s. She was shocked, dismayed, and confused. But she was also in love with Charlie; his diagnosis did not diminish her deep feelings for him.

Charlie suggested she meet with his social worker at the Association to learn more about the disease. Elizabeth did that and though the information was daunting, her connection with Charlie was strong and true; she, too, felt they were destined to be together.

They began traveling and made plans to move in together.  In a vineyard restaurant in Napa Valley, Charlie proposed and Elizabeth said Yes. Today, they are living happily, grateful they have found each other

“None of us know what will happen next,” Elizabeth says. “Just the other night, we were at a dinner party. One friend was just released from the hospital after heart surgery, and another friend was facing a hip replacement. I felt concerned for my friends and I felt so lucky that Charlie and I were happy and together. We are dedicated to living with joy and curiosity in the present moment.”  

*****

Q 4 U: What is a reason for gratitude in your life?