Write to remember

“Every man’s memory is his private literature.” -Aldous Huxley

Several months ago my friend Bob Van Hook sent me a poem written by a man who began losing his grip on memory a few years ago when he was 50 years old. The author, David Hollies, prefaced the poem with this note: “I must have written this sometime last year. I found it on my desk. Another in a series of writings about my journey with dementia – something akin to Alzheimer’s. Feel free to share this with others.”

“I must have written this sometime last year. I found it on my desk.” A world of information in 14 words. As if Mr. Hollies is straddling a chasm between knowing and not knowing, between recognizing and being surprised, between being himself and watching himself, between climbing and falling.

I can’t stop thinking about this poem; it haunts me. Read it slowly, perhaps aloud.

Lost and Found

by David Hollies

The first few times
Being lost was frightening
Stark, pregnant
With the drama of change
Then, I didn’t know
That everywhere is nowhere
Like the feeling when a ocean wave
Boils you in the sand
But as time goes by
Each occurrence of lostness is quieter
Falling from notice
Like the sound of trains
When you live near the tracks
Until one day
When a friend asks
"How often do you get lost?"
And I strain to recall a single instance
It was then that I realized
Being lost only has meaning
When contrasted with
Knowing where you are
A presumption that slipped out of my life
As quietly as smoke up a chimney
For now I live in a less anchored place
Where being lost is irrelevant
For now, only when there is a need
Do I discover where I am
No alarm, no fear
Just an unconscious check-in
Like glancing in the rear-view mirror.

“Being lost,” as he says, “only has meaning when contrasted with knowing where you are.”

My Sissy was a proud woman, always immaculately dressed, coifed, and with that beautiful coral ring perched high in a golden filigree throne on her right hand. Sissy seemed like royalty to me, bestowing upon me with equally subdued glee her satisfying corn pudding (recipe at the bottom of the post!), a brand new piano in support of my weekly lessons, and stylish hand-knitted angora Barbie doll clothes. She was my mother’s sister, older by 17 years, and raised my mother as her own after their mother died too young, shortly after my mother’s birth.

A furniture store owner’s wife, Sissy attended to every detail of showroom beauty using the keen eye and sensibility of a small-town decorator with a subscription to House Beautiful: plastic rings of fruit engulfing large candles under glass and large oil “paintings” of light-imbued pastoral landscapes the exact length of sofas. Henredon and Drexel furniture companies paid for a dozen Christian Tours around the world, adventures from which I was the awestruck recipient of treasures like grass skirts and plastic leis, Chinese dolls with intricately embroidered silk dresses, exotic carvings of wild animals unknown to me, my first introduction to the world outside. (There was a most memorable gift of small, unopened airline vodka bottles that I experimented with in our backyard tree house accompanied by the neighborhood Jablonski twins, but I’m guessing that may be far too much information and could take us off track. Sissy had never seen such tiny bottles before and I dare say she didn’t know what was in them; otherwise, her Southern Baptist self would never have been caught dead buying them).

As she slid into the slow death of Alzheimer’s, Sissy tried fearfully to cling to the regal self she was. It was that middle state that so fascinated, frightened, and horrified me, that knowing while sliding. Once, a few years before she fell irretrievably into herself, I visited. Walking into her small kitchen, I was immobilized by dozens of calendars – on the door to the basement stairs, the refrigerator, the painted cabinets above the sink, the wall holding the wobbly looped potholders Granddaddy created on a tiny red metal loom as physical therapy after a stroke stole his left side. Each available surface was covered with a calendar, some large pictorial ones with big squares, some those little tear-off paper ones that car dealers and insurance agents give away.

And on each, a tumbled nest of dark black lines across the squares of passed days, a furious marking, a heavy-handed and intentional series of Xs across the blocks, the unique and horrible signature of a woman desperately trying to keep track of where she was in time, knowing that she didn’t know and couldn’t remember, creating strategies for tracking, for knowing, for pretending to know, for convincing herself and others that she did, indeed, know, for saving face. But she didn’t know. As soon as she turned away from each calendar, the day fell from her mind, a problem she solved by ensuring that in every direction her head could turn, there she would find solace, the date, that very one. The one who could help was long since gone: when his Alzheimer’s turned his generous sweetness mean, her husband and my Pawpaw had been taken away to play with a small stuffed Elmo doll at Autumn Care Rest Home.

We took the Morganton News-Herald to her daily, believing that contact with the outside world would help in some undefined way. Puzzled at the accumulated piles we found around the house, untouched, we finally understood that there was one newspaper, next to her bed, that she read and re-read, dozens of times each day, week after week, month after month. And until we took the battery from her car while she slept, she drove slowly each day the three blocks to the Winn-Dixie, bought her daily Hellman’s mayonnaise and toothpicks, watchful teenaged bagboys surreptitiously trailing her slow, queenly  processional back home in their own cars, guiding her gently back to her rose bushes and calendars when she got lost.

In her bedroom, we moved from calendars to post-it notes, hundreds of them, many with the same information repeated over and over again. Twenty-three small one-inch by one-inch yellow post-it notes perched precariously on the phone alone, with my mother’s phone number and the beautician’s. We knew she had lost the battle when she started wearing only sweat pants with elastic waists and, most importantly, when she stopped getting her hair done.

And then, one weekend when my oldest daughter visited my mother and stepfather, they took her to see sweet Sissy, as Emma called her. It was on that visit that they realized Sissy had finally left for good. Sitting proudly in a straight chair in the living room, it became obvious that she had been sitting there for days, a phone next to her, not able to move even to go to the bathroom, unable to call for help since it wasn’t the phone with the post-it notes. Covered in her own excrement, as they entered the room she did what she had always done when greeting guests: she briefly touched her now shaky and liver-spotted hand to her hair, as if to adjust the curls. She was lifted gently from the chair, her hair carefully brushed, and swept away in an ambulance, never to return to her home of over 60 years with its perfectly matched living room suite with arm covers, decorative sconces, pewter collection, and 100 rose bushes in the yard. It is among the worst ways to die, uncoifed, unremembered, unremembering, and not yet dead. Soon, ensconced at the Autumn Care Rest Home, she even began forgetting to chew.

One of the readers of this newsletter wrote a few weeks ago to ask why I write 37days, whether out of fear, trepidation, obligation, or obsessive compulsion? It was a good question, one that made me laugh since the options were so dangerously close to the truth, and one that I knew the answer to. I write to remember, particularly in a family with such an irresistible urge toward Alzheimer’s.

When I had asked myself the question that started this newsletter – what I would do with my last 37 days? – the answer was clear: write like hell, leave as much of myself behind for my two daughters as I could, let them know me and see me as a real person, not just a mother, leave with them here for safe-keeping my thoughts and memories, fears and dreams, the histories of what I am and who my people are. It is a strategy for remembering not unlike a multitude of calendars, a phalanx of post-its.

~*~ 37 Days: Do it Now Challenge ~*~

There is something sweet and irresistible about making peace with where we are, living in David Hollies’ “less anchored place.” But I’m not there yet. I want to remain who I am until I die. I’ll be the one shouting “Do not go gentle into that good night…rage, rage against the dying of the light” as they cart me away in my straight chair and elastic-waisted sweatpants. Or, who knows? Perhaps I’ll get really, really good at detachment and be okay with the not knowing and with being in a place where everywhere is nowhere and being lost is irrelevant. When I get there, read these 37days newsletters (and Pippi Longstocking) to me over and over again, won’t you? Either way, the challenge this week is to write to remember.

And if you worry about Alzheimer’s, see the “Maintain your brain” resources at the Alzheimer’s Association. Also, congratulations to the Alzheimer’s Association for the extensive resources they have for diverse populations with Alzheimer’s disease .

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Sissy’s Fantastic, Unapologetically High-Fat Corn Pudding

I always begged Sissy to make this when I went to her house for dinner. She always obliged, secretly thrilled by the request, I’m sure. I hope you enjoy every bite of its completely high-fat and decadent self. Don’t you dare substitute any wimpy low-fat milk or cream in this. It’s incredibly easy to make and will make you forget all your troubles. Promise.

4 cups frozen corn kernels, thawed (Sissy always used frozen white shoepeg corn)
4 large eggs
1 cup whipping cream
1/2 cup whole milk
4 tablespoons sugar
1/4 cup (1/2 stick) butter, room temperature
2 tablespoons all purpose flour
2 teaspoons baking powder
1 teaspoon salt

Preheat oven to 350°F. Butter 8x8x2-inch glass baking dish. Blend all ingredients in processor or blender until almost smooth (Note: I hold out 1 cup of the corn to mix in the batter just before baking rather than blend it all in the blender – I like the texture of having some whole corn kernels in it…) Pour batter into prepared dish. Bake pudding until brown and center is just set, about 45 minutes. Cool 10 minutes; serve. (Note – it always takes mine longer to cook – usually 60 minutes – cook until middle stops jiggling and it browns a little on top)

Enjoy! And say a little hello to Sissy as you do.