“Good! The next step is to get onto all fours, like you’re going to crawl.”
He did, looking quite proud of himself. “Easy as pie. Now what?”
“Tuck your knees under.” I bent my knees.
Tottering a little, Paul did the same, and I held an arm out, ready to steady him.
“Then you use your arms to push yourself up.” With that, I stood up, and Paul toppled onto the rug.
Looking down at him, I smiled encouragingly, and worried if he had the strength to pull this off.
He grumbled. “Okay . . . again!”
“Wait now, catch your breath.” This standing stuff wasn’t easy. “Okay, here’s another plan. You get on all fours and crawl over to a chair, or the couch, or even a wall. Want to try that?”
“Do I have a . . . ch-choice? I’m on the floor!” Losing patience, he crawled to the couch, grabbed it with one hand, then the other, and pulled himself up.
“Wonderful!” I whooped in delight. “You’re breathing hard. Are you okay?”
Paul nodded yes, then said: “Breathing hard—better, better . . . better than . . . oh, you know, the other thing.”
“The other thing?”
“The other thing,” he insisted.
Breathing hard, better than . . . the other thing, the other thing . . . What does he mean?
“Than hardly breathing!” he finally blurted out.
I hugged him. “Congratulations! You stood up, and you found the words you wanted. Two bull’s-eyes.”
He fixed me with a gaze that didn’t need words, about how far he’d really fallen, and how quickly the yardstick of success can change.
“Remember the title of that Richard Farina book—Been Down So Long It Looks Like Up to Me?” I asked.
His eyes closed, as he nodded in desolate agreement, “Bull’s-eye.”
Because he was no longer patrolling the hallways of the night, watching old movies reserved for night-dwellers, or working on a manuscript, he became diurnal for the first time in his life. We rose and retired together, like two breaths bound by the same rhythm. Our nights started early, at 10 p.m. or so, and collapsed into the sleep of bone-weary fatigue, the heavy rubbery sleep one finds on especially arduous expeditions. Paul, who used to go to sleep at 5 a.m. and sleep for six hours, now slept for ten and woke refreshed. I slept for nine and woke tired.
In most of my dreams, I kept anxiously trying to reach home, a cloud-draped empire of calm and safety. Bedraggled from travel, I felt lost and alone, and Paul could no longer help me navigate. A typical one found me in England, out shopping and laden with a bag of fresh produce, as rain pinwheeled down. I was drooping with fatigue, so I decided to flag a taxi to take me home, then realized to my alarm that I didn’t know the address, had never stayed there before. Paul was already at the flat, and I phoned him on my cell phone. But, for the life of him, he couldn’t remember the address either. As tired as I was, I patiently asked him to try to remember, then to check for envelopes that might be lying around with his address on it, or to look at the number on the front door. Growing impatient, I knew even in my dream that losing my cool would only fluster him, and there was nothing he could do about his condition. So I spoke calmly. But I worried if I would ever find my way, and it was telling, I suppose, that in my dreams I was adjusting to Paul not being able to help, let alone direct, me.
Nor could we any longer divide up territory in terms of time. His turf had been the somber, secluded, star-spangled night, when he would do his writing; and my territory the bare-faced, incandescent assemblages of morning, when I enjoyed the frisson of waking early, before household and neighbors, and having the world to myself.
My routine was to slide into a green velour robe and stagger to the kitchen, barefoot, in a waking dream. I’d turn on the stove, then follow steps constant as the heavens: unscrew the brass espresso maker, fill its wide hips with filtered water, nestle the coffee sieve into it, open a bag of ground espresso beans, inhale the aroma of smoky-vanilla almond butter, inhale the aroma again, measure two scoops into the sieve, tamp it down with the scoop’s flat side, screw on the top of the coffeepot, place it on the gently luminous stove ring, begin preparing the foamy milk by plugging in a milk frother, filling its reservoir with filtered water, plugging together three small pieces of the frothing nozzle, attaching the oval milk silo, half filling it with skim milk, waiting for the red ready light to glow, listening for the huffing and chuffing of the espresso maker to begin, sliding a stainless steel cup under the frothing nozzle, holding the flow button down with one hand while lifting and rotating the cup with the other as steam rasped through the milk, which it heated and whisked until it leapt out billowy, building a rising white soufflé, and I lifted my finger off the button, just in time, before the cup runneth over, while hearing the espresso maker begin chugging unevenly like a steam train straining upgrade in the Andes, and at last coughing tubercularly as it finished perking. Then I’d scoop dollops of froth into a large yellow cup, after which I’d pour a chaser of thin bitter espresso right through the center, and follow up with another layer of frothy milk. Such routines focused my mind, inviting the muse to dine. Making cappuccino at home was my equivalent of the oriental tea ceremony, and helped to seal my attention, something I needed before padding down the hallway to begin work.
Now that Paul was waking with me, I couldn’t afford so much personal time at breakfast, and I switched to a quick mug of green tea spiked with ginger. No longer beginning the day in solitude was a big loss. It took away a peaceful oasis, it narrowed my sense of self. In those solo hours, I had been able to expand, fill up the space, sprawl a little. Or maybe it wasn’t as passive as that. Maybe I widened it and used it in the ways I commanded, filling the space with writing or whatever else I was doing. As the day dawned, I sometimes felt like I was the only person in the world, and it gave me a glorious sense of freedom. I wrote between the tick and tock of the clock, between dream and wakefulness, wading into lagoons of perception and thought, and by the time I emerged from the bay window for a second cup of coffee or tea, I would have written a page or three, barely knowing what they were about. Often I would drift outside for a spell and patrol the morning, surrounded by ancient forces much greater than I, feeling a kinship with lichen and deer, dawning with the rest of nature.
It was quite shocking, suddenly, to have Paul join me in the kitchen. “Honey, it’s early,” I’d tell him. “I don’t think you’ve had enough sleep.”
And some mornings, to my relief, he would trundle back to bed for a few hours. If not, he demanded breakfast, “But hungry.” Which I could not ignore. So my half-awake Impressionist world with its spell of bright crinkled edges and dawn light would be broken, jarred, as I brought myself into focus with a snap, ready and able to test Paul’s blood sugar, give him medications, inject insulin, fix breakfast, fret about his catching bits of breakfast in his throat.
For decades before Paul’s stroke, I’d traveled on my own, and we’d spent semesters teaching in different cities, our time essentially our own again, our relationship alive in the dimensions of telephone, letters, packages, and not-too-often, warm skin, fingertips, and breath. I didn’t wish to go back to those days of telegamy, as we called it, marriage at a distance, didn’t prefer leading separate lives. But I knew I’d need to find a way to reclaim some cherished solitude, and I wasn’t quite sure how.
It was also arduous for me not to feel impatient and resentful at times in the role of teacher, attendant, nurse: caregiver. That word should weigh more than others on a page, sag it down a bit and wrinkle it, because the simple-sounding job frazzles as it consumes and depletes. Not that it’s only gloomy. Caregiving offers many fringe benefits, including the sheer sensory delight of nourishing and grooming, sharing, and playing. There’s something uniquely fulfilling about being a lodestar, feeling so deeply needed, and it’s fun finding crea
tive ways to gladden a loved one’s life. But caregiving does buttonhole you; you’re stitched in one place. With children, this labor is an investment in their future, and they sponge up lessons. With a stroke victim it’s also a relic of their past. While children learn following an upward arc, like wide-winged and clumsy albatrosses, stumbling at first, but rising and growing stronger and sleeker each day, Paul wasn’t on a learning curve but seemed trapped in a circle. He’d swoop forward only to loop back again and fall to earth.
One day, for example, we rehearsed over and over his answering the telephone: lifting up the handset, pressing the big pink button to turn it on, speaking into the perforations. Two days later, he stood beside the ringing phone, finally picked up the receiver, ignored the pink button, and immediately pressed a slew of wrong buttons, only to hear a robotic voice announce: “The answering machine is OFF.”
“Hello?” he said, thinking a caller was addressing him.
Once again I demonstrated how to use the phone.
Words for learning tend to suggest feasting on the world—digest, absorb, soak up, assimilate, grasp, take in. Paul slipped, went astray, blundered back to square one, groping for tidbits a toddler would have scooped up and assimilated with ease.
His working memory had been damaged, and without that temporary mental clipboard on which we scribble a few chunks of information while we’re using them, it’s impossible to remember a telephone number long enough to dial it, or even how a sentence you’re uttering began. It’s usually limited to seven elements, which is why telephone numbers have seven digits. I realized Paul had to relearn what he’d “learned” only the day before, unable to remember instructions, especially ones with a couple of steps.
Learning seems like such an elite skill, but even the lowliest vinegar worm, blessed with only 302 neurons, can learn from experience which bacteria to eat and which could make it sick. A fruit fly can learn to avoid orange jelly spiked with quinine (researchers can be so strangely creative and so cruel); a blue jay can learn that biting a monarch butterfly’s wing will make it vomit; a firefly can learn the flashy Morse code of its mate. Any creature with a nervous system can learn, if it has enough time, and doesn’t quit from boredom, and isn’t overwhelmed by competing stimuli. This gave me such hope, but how much could Paul relearn?
Yes, caregiving had its hopes and charms, but on the downside, this meant that every hour was interruptible. My days no longer contained adjoining hours in which to work. Yet I had a new book to write, situated in WWII Poland, blessedly far away in time and space. So while Paul was straining mentally to reclaim language, I was straining to learn the peculiar skill of concentrating on my work in attention gulps. A trick parents learn from the get-go with kids; they pretty much have to. Plus they learn to work while keeping one ear open for signs of discord or trouble. Such parenting skills, though new for me, came with many others: teaching him how to hold a spoon or fork, where the light switches he’d used for decades were located, how to climb into a car, step over curbs, open a pull-tab carton of milk.
One morning he complained, “I can’t even wipe my ass right,” and so I found myself patiently explaining that he was still using his right hand, the one half-paralyzed, and he might try to use his good left hand instead. Later in the day, I saw him seated on the toilet, following my advice.
“Better?” I asked, and he nodded his head yes.
So much now dumbfounded him, especially household gadgets, in part because his vision had suffered and gadgets tend to have many insufferably small black buttons. I tried to reinvent the house so that he could live in it safely with as much independence and as little frustration as possible. A raised toilet seat. Big red dots on the microwave panel marking #1 or #2 minutes, so that he could warm things up. The stove was off-limits. Because it was impossible for him to remember a simple series of numbers, I bought a telephone with big buttons and programmed in phone numbers so that he could speed-dial my cell phone, 911, his doctor, and two friends. A larger, simpler TV remote. But he still couldn’t work the TV remote well; the symbols looked like geometric faces. Inevitably he pushed the wrong button, which began a cascade of button-pushing that only made matters worse. Embarrassed, he often summoned me just to turn the TV on or off, or show him yet again how to change the channel or volume.
Shaving ham-fisted with a safety razor left him so bloodied that I bought him an electric razor. He struggled to use that one, too, and would emerge from the bathroom, thinking himself shaven, with only two-thirds of his stubble gone, wild white tufts poking up among clean patches, and the right side of his right cheek (which he couldn’t see) still growing strong. It never seemed worth sending him back to fix.
Such little oddments contribute to the texture of a relationship. Paul still wasn’t realizing all that he’d lost, but one day, out of the blue, he told me that he felt like something important had fallen out of his life.
“What?” I asked. He didn’t know, couldn’t remember, but he felt something missing. And all he wanted to do was sit and stare out the windows.
“Are you sad?” I asked.
“No, just . . .” He tried to continue but the next words seemed to be snatched from his mouth and carried away. Finally he came out with: “Just sitting and staring.”
And I believed him. For voluptuous brooding you need an array of words. So in a way it was still a blessing that he didn’t know what he was missing.
In The Immensity of the Here and Now, a book whose title I’ve always coveted, Paul wrote about a philosopher who had lost his philosophy after 9/11, and whose best friend provided him with a new one: that of the philosopher Ludwig Wittgenstein. What was I to do with a wordsmith who had lost his language?
We modern humans are distinguished from our predecessors by lavish, sometimes outlandish, spells of self-awareness. Our scientific label says it all. We’re not just Homo sapiens—knowing man—but rather Homo sapiens sapiens—the man who knows and knows he knows. Today, all that knowing requires language, speech, and written words—three distinctly different tasks. Paul’s global stroke had nearly stolen from him the second sapiens of Homo sapiens sapiens. Paul was learning more words, but to know you know requires many more connections, much more than a heap of nouns. Knowing the names for things like parachute and candelabra and uncle won’t save you if your uncle attacks you with a candelabra for stealing his parachute. That requires a web of understanding: how heavy the sterling silver candelabra is, the grudge your mother’s brother always held against you, knowing what a parachute is used for, being able to compute the speed at which he’s running after you and whether you can outrun him, remembering that your mother warned you about him, and many more wordy twists and turns that reveal the intricate relationships between yourself and the world around you, and the people and objects who inhabit that world.
Unlike most other animals, we’re not locked inside a fast, reflexive, yet limited world of immediate sensory experiences. To live in the present is refreshing and fascinating—if you’re a human and it spares you a conflagration of self-sabotaging doubts. Probably not so for animals forever bound to each vanishing moment. We live in vanishing moments, too. We’re also curbed by our senses. But we can imagine the luminous spirits of worlds that are not physically knowable to our senses in the here and now, worlds imperceptible yet thinkable because people once spoke and/or wrote about them—the lands of history, fantasy, religion, the future, might-have-been, doesn’t-exist-yet-but-could-just-work, and so on. We imagine the possible through words. We use words to help us remember who and what we are. We refine how we love in words. We use words to solve problems—partly because a language that offers the word problem by necessity must include the word solution. Both words include the absorbing idea that a human is an animal who can act upon the world in such a way as to solve a problem. Using those words teaches us that we can master the world by understanding it. The more complex our wor
ds, the more layered our story, the more refined our understanding. Some grains of knowing are only possible when passed through the sieve of carefully arranged words. In Life with Swan, Paul wrote of us:
One of our favorite words was salience, for how something shoots out at you and “gets” you. We were always surrounded by saliences: the world bristled and sparkled, came out to meet us, and we went toward it. . . .
Sitting and staring at the yard, Paul could no longer say: “It’s a bright but foggy day. Not like yesterday. Maybe it will burn off or blow over.” Instead, his mouth stiffened, then relaxed, stiffened, then relaxed, until he finally managed to say: “T . . . t . . . trans . . . trans . . . trans . . . trans-lu-cent.” Then he settled back into the folds of the sofa and smiled in pleasure. He had grown thinner in the last month, and the cushion behind him fitted comfortably into the curve of his neck.
Oh! I thought. He knows the difference between translucent and transparent—between a well-lit but unclear state, and light passing through something with clarity. His brain still knows how to use words to express fine distinctions. And the smile? Because he knows he knows.
“My little Homo sapiens sapiens,” I said, much to his amusement, as I hugged him tight.
CHAPTER 14
THE HOUSE WAS FULL OF WHISPERS, BECAUSE PAUL’S BRAIN had trouble coordinating lung and face muscles to blow resonant breath back into speaking. We made rubbery faces to practice sounding out letters, and we rehearsed w by puckering up for kisses. In the evenings, as we sat in the comforting depths of the old rose-covered couch, finding a word could take as much as half an hour for Paul, as I tried to guess his target. I learned to ask him sorting questions.
“Light house keeper,” Paul said, pronouncing each word in the same flat rasp, with no gesture, pitch, stress, or facial expression to act as a guide.