One Hundred Names for Love: A Memoir (5 page)

“That’s okay. Your coordination is a little off. Try again.”

Wrapping his fingers around the log-like handle, I helped him scoop up eggs and aim for his mouth, which he opened much wider than he needed to, offering a gaping target, and I thought he smiled a little as the eggs fell in. But with a rubbery, uncoordinated jaw, his mouth couldn’t trap the food, a dash of which seeped from one corner and onto the towel, creating a lumpy yellow tie. Quickly he wiped his chin with the towel, smeared it really. Paul looked horrified by the mess he had become. Yet he insisted on trying to feed himself again. Up came another spoonful, but soon after liftoff his spoon tilted sideways, spilling the yellow curds onto the lip of his plate. Still holding the spoon aloft, swinging it sideways like a construction crane, he began searching his tray for the fallen egg, unable to find it.

“It’s right here.” I collected the morsels with a cafeteria spoon and fed him by hand, as if feeding a baby, stunned by the new routine. One minute I was crying at home, the next spoon feeding my husband.

It was becoming painfully clear that he would need lots of rehabilitation to be able to return home—if living at home was even possible. If not, I would need to consider the unthinkable, the unspeakable, something so mind-blowing I didn’t dare give it words lest they act as a jinx, something that felt too old, too wrong.
A nursing home
. How could this be? Was life really so different than it had been only days ago?

Wistfully, I replayed a phone conversation we’d had just a few weeks before. I was on the West Coast, and we’d talked for half an hour or so, about nothing, about everything, including a painful predicament I’d found myself in with a good friend.

“Some mess, huh?” I’d simmered into the mouthpiece of the telephone. “How can anyone not love life, when given enough time it will exercise absolutely
all
the tender little muscles of one’s heart?”

“You are an earth ecstatic,” I’d heard Paul sigh.

“Was there any doubt?”

“Just don’t get too nutsy about looking for answers,” he’d advised, half seriously. “As Confucius said, enjoy the heist. Don’t buck the current. Try to keep on top of the dung heap. Maybe you’ll find the open-sesame of matter after all.”

I’d laughed and parried: “If I were Herod in the middle of the Massacre of the Innocents, I would
pause
just to marvel at the confusion of that image!”

“Listen, puddin’ cheeks . . .”

“
Puddin’ cheeks?
” My eyebrows had leapt up.

“It’s part of my British ethnic revival. I’ve got to get back to work before the secretary blows the whistle on me.”

“Blows your what? Sure you wouldn’t like to step into the darkroom with me and see what develops?” I’d said this in my best Mae West voice.

“Ha-ha . . . something just occurred to me.”

“What’s that?”

“We
can
go on meeting like this,” he’d said tenderly. “Over and over and over.”

“Thank God.”

Then semi-jokingly: “. . . You know, your agnosticism is much too vocative to take seriously . . .”

“Hey, I thought we just finished that part of the conversation. This is the part of the conversation where we make nice-nice and hang up.”

I tried to push the memory away, but it floated like an iceberg, glassy, blue-streaked, riddled with air bubbles from an earlier age. Was that flavorful part of my life really over?

As the hours splintered and Paul underwent another barrage of tests, my hope died a little with each one. His brain was woefully scrambled by the stroke, and, worst of all, he kept throwing childlike tantrums.

“What shall we do?” I asked Dr. Ann, my voice flattened by despair. “Maybe I should take him to a rehab center somewhere? I looked up some on the Internet, and there’s one at the University of Michigan that sounds like it might be good. . . . I can’t believe I
have to think about this. I don’t even know how to. The choices are overwhelming.”

“I’ll help you,” Ann said, wrapping a strong arm around me, a swimmer’s arm. “We’ll figure this out together.”

We were standing at the nurses’ station, out of Paul’s hearing, huddled at a counter in a wash of stark light, as if inside one of Edward Hopper’s lonely paintings. I had little family left, Paul was almost all of it, but, like family, Ann knew our joys and sorrows. Together we mulled over several large urban hospitals offering intensive stroke rehabilitation programs.

“I could contact a friend at Hopkins,” she offered somberly.

“But, at seventy-four,” I thought out loud, “with his heart trouble and diabetes, could he even handle the upheaval of the trip, and cope with living in a hotel, let alone a strange city, all the new faces—
he’s so confused!
—and completely unfamiliar doctors and therapists? Could his heart take the upheaval?”

“I don’t know,” she said truthfully. “And, you know, he may have to wait a week or two for an opening . . . then we can arrange to have him transferred. . . . Or he could stay here, and maybe go into the Rehab Unit downstairs—maybe even tomorrow, if they have a free bed.”

“There’s a rehab unit downstairs?”

That was a land I didn’t know about and had never visited. In my imagination, it existed as the Land That Time Forgot, a preserve of dinosaur-like patients lumbering over linoleum floors.
Or will it be brisker and brighter than that, I hoped, more of a workshop for broken racing yachts?

Over the years, while he coped with diabetes and a pacemaker, the hospital had already become a too-frequent port for Paul. Now it would be a salvage yard, for how long I didn’t know—surely a few weeks. But that made the most sense, at least for now. I returned to Paul’s room.

“MEM, MEM, MEM, MEM?!” he demanded hoarsely, which I took to mean,
Where did you go! Don’t leave me!

“I was nearby, at the nurses’ station, talking with Dr. Ann.” Bedbound as he was, I might just as well have been in China.

In a fog, without sleep, I tried to explain to Paul what was happening and discuss where he would be going—instead of home. He understood just a fraction. “Mem,” he uttered first pleadingly, then angrily, over and over.

CHAPTER 4

A
S I WOKE, THE SUNLIGHT, FILTERING IN THROUGH THE
bedroom window, shimmered across the floral quilt and hit my eyes. I raised myself languidly onto my elbows. Distant gagging and ripping sounds trickled through the windows. But that was only the raving of crows and the downshift arpeggios of trucks, scattered voices of summer. I dropped back onto the bed with a groan. I used to feel a sensuous joy in waking up, sometimes slithering around in bed for a few moments, just taking pleasure in having limbs that glide in different directions, and enjoying the feel of the soft warm sheet under my shoulders, before padding across the ridged carpet in bare feet to a skylit bathroom, where I was greeted by teal and lavender tiles and a wallpaper motif of peacocks and trees of life.

Now I woke in a state of anxious hurry, rushing to wash and dress, while worrying about how Paul might have passed the night and what momentum, if any, his brain might have gained. The idea of breakfast simply didn’t occur. Driving to the hospital with a dry metallic taste in my mouth, I felt as if the minerals were leaching out of my bones. I wanted somehow, miraculously, to right the wrongs in Paul’s head. But, at the same time, I didn’t want ever to arrive and face the helplessness and emotional turmoil that awaited me. Between those two fates, the miles evaporated and I found myself turning into a woodsy parking lot, forgetting to lock my car door, lumbering into the building without a sense of walking.

At first it was easy to get lost in the hospital’s maze of shiny hallways linking whole neighborhoods of rooms and winding past departments called Emergency, Imaging, Intensive Care, that appeared out of the fluorescent dusk like brightly lit upstate towns. Hadn’t I just passed the cafeteria and kitchen? Where was the Rehab Unit? I pressed on, entering hallways that narrowed and widened and narrowed again, branching like a well-lit circulatory system.

Quietly, sometimes unawares, I found myself slipping into my naturalist’s way of knowing, coping by detaching myself enough to appreciate the ecology of the medical world I was traveling through, rather than being totally overwhelmed by it and drowned. No, this other sense of
lost
was what I needed. How coolly the brain obliges, and isolates, compartmentalizes, shifting its gaze from one hub of action to another, composing the tone poem of a different mood, when need be, or running a bold new face up the flagpole.

Disassociating, mindfulness, transcendence
—whatever the label—it’s a sort of loophole in our contract with reality, a form of self-rescue. Linked neurons, firing like sparklers, make the sudden change feel seamless, and seemless. One network dims as another wakes to high noon. Both stay wired and ready to serve, like unheated spare rooms in a large old Victorian mansion. Why expose them all to scrutiny? Be rational about religion? Too scary; hide religion from critical thought. Apply human codes of ethics to how we treat animals? A slippery slope; don’t stroll there. Agonize nonstop about Paul’s stroke? It would fry the wiring; transcend if possible. Lose yourself in nature’s dens and crevasses, and turn the key on heartache. When you can’t, toss drop cloths over everything, lower the heat to save energy, and allow a sedated overseer to take charge. Drift on autopilot. Just go through the motions.

As I continued down unfamiliar corridors, white-robed people, green people in green mushroom-shaped hats, and people pushing patients on beds all passed in slow motion. But in the firmament of fluorescent lights overhead, excited atoms were shooting electrons into higher orbits far from their home, where they paused for a tiny fraction of a second too quick to imagine, almost immediately tugged back down again. Falling toward their hub, the electrons released extra energy as photons of light. Walking down an endless hallway, I smiled glumly, feeling far from my own center.

Everything about this Oz took getting used to: the uniforms, dialect, climate, food, geography, machinery, protocols, hierarchies, and low ambient sounds of whirring, squealing, gnashing, and incessant beeping. Stricken families were duty-bound to learn enough of its culture to speak with the natives and help a loved one survive. So it felt right that I needed to cross a bridge en route to the hospital, and another bridge walking from the parking lot to a set of space-age doors that saw me coming and sprang open, let me pause a moment inside a toasty vestibule, before the inner doors glided open, ushering me into a world apart, one with chilly corridors and overexcited atoms.

A FEW DAYS
post-stroke, Paul now seemed to recognize a spattering of words, yet he was still woefully confused. I kept waiting for him to rebound, but the signs were ominous as I played them over in my mind. He couldn’t read the newspaper or tell time by the large clock on the wall. He couldn’t drink without choking. He couldn’t do basic addition. When he tried to stand, he surprised himself by how wobbly he was. He needed to be retaught how to sit in a chair, use the toilet, work the taps in the bathroom, shave, walk without weaving or falling. The fourth and fifth fingers on his right hand had curled into a claw. But most of all, there was the aphasia. Although he was able to make some of his feelings known through facial expressions and gestures, he was frustrated and furious that no one could understand his gibberish when it clearly made sense to him. He didn’t know his own name or mine, and kept gesturing wildly that he wanted to go home.

While I watched, Kelly, a petite and cheerful blond speech therapist, stood beside his bed and calmly tested his mouth and throat muscles, showing him by example how she wanted him to move his jaw, tongue, lips. The right side of his face still drooped, but he could stick out his tongue and push it around his mouth like a wayward eel. If she scrunched up his lips he held a pucker, but he couldn’t pucker his lips by himself.

On her chart, Kelly noted that Paul answered simple yes/no questions—“Are you in bed? Is this a hospital?”—by nodding, with 80 percent accuracy. But his responses were accurate less than 25 percent of the time when she asked him to do simple things. When he was shown two objects and asked to point to one of them, he always pointed to the object on his left. If she asked him to say “Aah,” he followed the command only 30 percent of the time. She jotted down:

Unable to repeat single syllable words.

Did not name common objects.

No functional verbal communication.

When asked to sing/count along with me, opened mouth very

wide, intermittent voicing, but no articulation despite some

movement of the lips.

His inability to respond seemed unreal, and though I wanted to cry, I forced myself to watch. She handed him an 8-by-10-inch communication board, covered with drawings of common items or actions, and asked him to point to the objects she named—a key, a clock, a child—but he was unable to. She showed him an alphabet board and asked him to spell his name. Mutely observing his struggle, I felt my hope dissolving, as if touched by acid. His Oxford First and fifty-one published books meant nothing now. He couldn’t spell his own name. When she wrote down
Raise your hand
, he opened his mouth wide and made a strange low murmuring as if trying to read out loud. Most poignant of all, when she handed him a pen, the tool he’d wielded with mastery throughout
his career, one I’d associated with him the way one links seahorses with ocean, he tried to hold it in his weak right hand and it slipped from his grip. Kelly suggested his left hand, but he didn’t try. She offered him a thick crayon and blank sheet of paper.

“Can you
write
your name?”

With difficulty, starting and stopping several times, Paul scrawled P-O-O-P.

Somehow managing to look both nonplussed and mystified, Kelly asked: “Do you need to use the toilet?”

He tilted his head blankly, the way animals sometimes do when they’re puzzled. So I pointed to the bathroom and asked slowly, “Toilet?”

Surprised, he shook his head no.

Her evaluation read:

Oral apraxia. Severe apraxia of speech.

Expressive and receptive aphasia.

Dysphagia with risk of aspiration.

Translated, it meant: my Paul couldn’t coordinate the movements of his jaw, tongue, and lips (
apraxia
). He had the worst degree of trouble saying what he wanted to, or understanding what people said to him (
expressive and receptive aphasia
). And a swallowing problem put him at risk of aspiration (
dysphagia
). Soon after his stroke, an X-ray video evaluation of Paul swallowing barium-coated fruit, crackers, and apple sauce had shown that he was silently inhaling particles into his lungs. When asked to cough, he couldn’t flex his throat muscles enough to cough the particles out.
Silently
aspirating. Sowing the seeds of possibly deadly pneumonia without any feeling that food had gone down the wrong pipe.

Kelly explained he could rule the liquid only when it was in his mouth. After that pure reflex is supposed to take over. When we swallow normally, a valve opens, allowing food to enter the esophagus, while closing the windpipe to prevent food from blocking the airway. This reflexive combo happens in less than half a second. But a stroke, especially one that produces slurred speech, can weaken the throat’s muscles. Thicker fluids or solid food flow lava-slowly and are easier to guide with drab muscles and dulled reflexes, lessening the chance of dripping fluid into the wrong tube. The hospital’s levels of thickened liquids were termed:
nectar, honey, pudding
.

“Pudding-thick only,” Kelly decreed. For a while at least, all liquids would be mixed with a powder called Thick-It, that smelled like a dry cast-off chrysalis and tasted gray, added until a spoon could stand up in the liquid. For Paul, clear water only if thickened to sludge. No milk, his favorite drink. No refreshment from a sparkling fizzy sip of Dr. Brown’s Diet Cream Soda. Nothing thin enough to quench a thirst.

You’d think
choking
would have stood out as the scariest assessment, but what shattered me was the note: “No functional verbal communication.” The stroke had done far more than damage his ability to read, write, or talk—his brain no longer wanted to process language at all. Yet I hoped to take him home sometime soon.

What on earth will going home be like?
The thought pinwheeled through my head.
Sad ghosts? A shrivel of silence in his study?
Not even the clacking of typewriter keys? Or will I hear a plaintive stream of “mem, mem, mem”? How will I be able to look after him at home?
I’d grown used to our household of two adults. What would life be like having him at home and handicapped, in need of supervision, unable to communicate his desires in words, and full of tantrums as a result?

Kelly and I left Paul to rest and we sat on chairs in the hallway to confer. She recommended further swallowing studies to monitor for signs of improvement, and also speech therapy five days a week.

“In terms of language,” I asked tentatively, “what do you think?”

She paused a moment to frame her thoughts, as fluorescent light showered down on us like silently accumulating snowfall.

“Long-term, I hope he’ll be able to communicate his basic wants and needs,” she said slowly, allowing time for the words to sink in, “verbally or in gestures or maybe using a communication board, with about 80 percent accuracy.”

Basic wants and needs
, I heard her say.
Basic wants and needs
. The phrase spun in my mind. As if that could ever be enough for normal people, let alone word-besotted creatures like us. Life lives in nuances and innuendos. How could Paul’s immense cosmos of words shrink to the size of a communication board overnight? How could ours?

“Short-term,” she continued with maddening practicality, “we’ll be striving for about 50 percent accuracy in naming common objects. I’d like him to be able to choose between two items, when you name them, about 80 percent of the time, and follow simple commands with 80 percent accuracy.”

Would you like the “pants” or the “shorts,” the “pillow” or the “blanket”? That would be life from now on?
My thoughts spiraled, and I felt not just psychic pain, but a specific ache I could locate in several muscles between my ribs.
Global
aphasia. Woundingly right. Our couple,
DianeandPaul
, had been a ghostly continent of two countries. What would become of it? Would a boundary of silence fall between us? No more Paul touching voices by telephone many times a day when I traveled? No more Paul calling to me across the hallway, “Poet, what’s a word for . . . ?” No more Paul tucking me in at night and leaving refrigerator notes in the morning? No more confiding, whispering intimacies, playing with words, sharing the world? It’s
beastly
, I thought,
completely
unthinkable
. And if he couldn’t read or work, what would he do all day? Probably want me to keep him company—and that was understandable—though devastating to my work, my freedom. I would need to be able to write for my own joy and sanity, but also now to support the household and help pay for Paul’s care. Still, I felt deeply ashamed to be indulging in such self-centered worries.