Hektoen International

A Journal of Medical Humanities

A fine notion

Ruth Z. Deming
Willow Grove, Pennsylvania, USA

Think of the worst disease imaginable. That’s what I’ve got. ALS, Lou Gehrig’s. One of 30,000 Americans. Me, a chaired professor of law at Temple University.

Maple Oaks has a good reputation. I signed the reams of papers to get in. But, damn, it takes a long time for a body to die, slowly, like torture, a little bit here, a finger goes numb, a little bit there, your toes can’t feel the floor.

I wanted to see the world again before I faded away. From my wheelchair, I look out the window and watch the beginning of spring—a trio of paper birches—yellow daffodils crowning the grounds—and the sight of residents, dying and decaying men and women, roaming the gardens with canes, walkers and wheelchairs.

I took a notion to get out of there for one last look around. And once Jacob Charles Rothman gets a notion into his sixty-two-year-old head, it’s going to explode into reality.

I was not yet imprisoned in an octopus of tubes, so they allow me to roam the grounds unescorted. Food does not interest me, so I wheeled myself out the back door at dinner time. Then, with nary a look around, I headed straight for the parking lot, where my shiny white Acura was parked.

Leaving my wheelchair behind, I climbed in. The engine started right up. Oh, that sound! Why had I never paid attention to it before? Br-room! Br-room! My fingers had begun to lose feeling; there was a certain numbness to them, as if they had fallen asleep, so it was difficult putting the car into “reverse” and pulling out of the parking lot in my slippered feet.

In no time, I thought, I’d catch on how to drive with my diminished capacities, but the opposite was true. The longer I drove, the harder it got.

I had a good two hours before it got dark. It was the dinner hour. Cars were hurrying home to greet their wives and children, carrying their briefcases, their laptops, their smarty phones, into their houses with two-car garages, five bedrooms, luxury bathrooms with marble floors. My darling Lucia, who died two years before me of breast cancer, had been a marvelous cook. She could whip up a great dinner in less than an hour. Her fresh salmon with cucumber dressing was unforgettable.

Her deftness in the kitchen made me smile, a lopsided one, at that. Something had happened to my face so it’s out of proportion.

Now it was my time to live once more before the horrors descended. And I would let them come. Sure, I had a “Do Not Resuscitate” in my chart, but as long as I could look out my window and see the magnificent world God or no-God created, I would be content.

The golden glow of the sun shone off to my right, a Valencia orange lowering itself in the sky, as I sped onward at 25 miles per hour.

Hands tightly grasping the wheel, head leaning forward, pumping the brakes, I traveled down the back roads, passing familiar sights.

I was on the home stretch now, which seemed longer than I ever remembered. There was the family restaurant The Roasted Pepper where the four of us would dine—Lucia and our two children, Ellen and Mark—helping ourselves to the salad bar, and being careful not to sit near the restrooms which smelled of cherry deodorizer in the toilets.

When my symptoms began, I suspected ALS right away. I looked them up on the Internet before I saw my internist. Staring at my fingers now, I remember how they used to cramp up, as did my legs. Medicine fixed that. Some things can indeed be fixed, but not the course of the disease. I will die a peaceful death, most likely of respiratory failure.

At the traffic light, I noticed a tiny cobweb growing in one of the drink compartments of the car. And there he was, the little fellow, wondering, perhaps at the motion of his once quiet home. Formerly, he would have been wrapped in a napkin and dropped out the window. Now I was glad for his companionship.

I cast my glance ahead toward the proud farm houses off to the right, which refused to sell themselves to the developers. My wife’s friend Phyllis Ludwig, whose husband is now in the early stages of Alzheimer’s—God, don’t these diseases ever let up!—had a brother who became an instant millionaire when he sold out to a developer. And, indeed, as I passed Chalfont, I saw the huge houses—some with columns like southern plantations—set on the fertile earth where cattle once roamed and chickens were slaughtered for market.

Oh no! Don’s Car Wash up ahead has burned down. Since I’m stopped at a traffic light, I’m unable to tear my eyes away from the destruction of a once-viable establishment that now lies in ruins, timbers with blackness exposed shamelessly to the whole world. Gripping the wheel, I execute a successful right turn, hoping to make the next left, which I do, at the Manhattan Bagel with its superb blends of coffee.

At my law office, my secretary Bernice had an urn of strong fresh coffee brewing all day long. Fresh is a necessity. Ever taste stale, burnt coffee? Grates on the tongue and the back of your throat.

I can no longer drink coffee. I have trouble swallowing. Many a time in my car I’d sipped on Starbucks coffee, with the tiny green straw, as I drove well above the speed limit toward my destination.

What was the good of hurry? I’d end up exactly where I am now. On Route 152 headed north. ALS, in some unfortunate individuals, causes dementia. My mind remains strong. People often say it’s good to have dementia because you don’t know what’s going on, the tragedy of your deterioration. Falderol! I want to be there every single minute, every minute up to the end. I want to know what it feels like as my mobile body slips away like a glorious oak rotting from the inside. At least, that is what I think now.

A tricky stop sign comes into view. What a good memory I have! It’s one of those two-way stops. The other two can drive freely past. I am the one to stop and watch as a black Buick hurries through the stop sign.

Hurry! Hurry! I see the lake on the left. Glimmering blue like the eyes of my beloved Lucia. How thankful I am I have finally gotten here. I offer up a prayer of gratitude. To give me strength, I punch on the classical music station and am in luck. Schubert’s Death and the Maiden comes on. Schubert, dead at thirty-four, was an exquisite melody maker. See how fortunate I am! Sixty-two and still in control of most of my motor neurons.

I put my hand on the left signal. Boink! I cannot feel whether I’m pushing it too hard or too lightly, but see the flashing red on my dashboard. Good job, Jake!

Parking was difficult. But I was here. Lake Galena. Hard to believe but once there was a city beneath the lake. A regular Pompeii, but all were saved, evacuated so the lake could serve as a reservoir. When our family rowed our canoe over the lake, trailing our fingers in the dark muddy water, abandoned houses were slowly decomposing thirty feet below. Were I a deep-sea diver, I’d swim through the waterlogged living rooms, the bedrooms and kitchens of the home owners. Who were they? The flood occurred in 1974. I was in law school when they flooded the town with unimaginable gushings of waters, as some of the town folk stood on the banks and watched their homes slowly disappear.

The park was alive with people. I pulled into a parking space where I could easily exit. I could barely turn my head around. I sat for a few moments in my car, gasping for breath, before getting out. Breathing deeply, I walked out onto the asphalt. This was not a wheelchair-friendly environment, so I must rely on my slim abilities to walk.

“Jake,” I ordered myself, “you will walk.”

Obeying my commandment, I clumsily got out of the car and walked toward the lake. I walked like a drunken ballerina, looking down so as not to stumble on the root of a tree.

The wooden bench was now mine. I lowered myself down. “We made it, Lucia,” I whispered. The view could not have been more magnificent. Within my view was the shimmering blue lake, reflecting lacey white clouds, and tender green shoots of newly growing leaves on the trees all around the lake. Again, I began to weep, hot tears falling onto my cheeks. A symptom of ALS is excessive, inappropriate emotion, but this was not my disease. It was me. In love with nature since boyhood.

This is where my heart resided. Lake Galena. And I would take it all in. Today. And watched the geese as they skidded across the water to partake of their twilight meal. Aquatic plants.

Young people and families were here. I watched Russians playing volleyball over on the grass. The smell of barbeque filled the air. Saliva ran wild in my mouth at the smell and I swatted the drool with my hand. I imagined my teeth crunching into a charcoal-broiled Nathan’s hot dog.

The sun descended across the lake. After a long struggle I returned to my car and began the long drive home. A dreadful left turn awaited me. I simply could not turn my head left or right to see if traffic was coming. God forgive me!

A screeching of brakes after I made my turn told me I had just missed a passing car. Onward I drove as if nothing happened, my heart fluttering like a bird. All is well, I thought, as I continued at 25 miles an hour.

Then I heard it. I knew not where it was coming from but it was like the arrival of Death. A siren. An operatic aria that boded doom, you’ve been caught. I slowed my car and pulled over onto the shoulder. Where were they coming from?

“Out of the car now!” said a fat cop. I opened my door and fell out onto the shoulder of the road.

“Up against the car, you old fucker!” he said.

Two other police cars—frightening black and white sedans with red lights twirling on top like you were guilty of murder—had surrounded me, as if I were an escaped convict.

What a story I told the residents back at Maple Oaks in my halting voice.

Lying in bed at night, my body twitching a bit, my hands and feet so numb I barely know they exist, I close my eyes and remember my derring-do. The geese skidding across the lake and all those houses, buried forever.

RUTH Z. DEMING, a psychotherapist and winner of a Leeway Grant for Creative Nonfiction, writes fiction, creative nonfiction, and poetry from her home in Willow Grove, Pennsylvania, suburban Philadelphia. Her work has appeared in publications such as Creative Nonfiction, Haggard and Halloo and Mused Bella Donna. A mental health advocate, she runs New Directions Support Group –  for people and families affected by depression and bipolar disorder.

Highlighted in Frontispiece Spring 2015 – Volume 7, Issue 2

Spring 2015



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