One Hundred Names for Love: A Memoir (35 page)

A bonus from Paul’s stroke was how much time Liz, Paul, and I had spent together—“more than I’ve spent with my husband!” she once laughed. Time, that sweet luxury, and the close tie it inspires, usually happens in college, when days move slowly around similar events. College roommates or housemates tend to stay friends for years. I’ve sometimes heard professional women complain about how hard it is to make lasting friends, how there isn’t always enough time for closeness to flourish. So one wonderful side effect of Paul’s stroke was what cherished friends Liz and I had become.

As different as we are, she’s a word-slinger who is sharp as a fang, we’re both bookish, both excited by nature, both curious little ferrets who identify with Autolycus, in Shakespeare’s
The Winter’s Tale
, a self-described “snapper-up of unconsidered trifles.” Not least, we’ve been thrown together during periods of sorrow and joy. We appear in many of each other’s memories. We’ve survived scary episodes in Paul’s life. And it’s been a godsend for me as a wordsmith. Even though I couldn’t communicate well with Paul, especially during his first years post-stroke, Liz and I could talk normally—sometimes just for the sake of talking, as humans do—and that kept me from feeling silenced by his aphasia.

Our days flowed around well-charted, often traveled courses, and yet, the underlying sense of falling out of time, out of the trajectory of one’s life, not by choice, but by subtraction, was frequent and disquieting. Then I grieved for him, for the lost and previous Paul. He grieved for that man, too. Both our griefs were mainly private, internal, unuttered. Return was impossible, and there was only one direction open; and so we kept our compass pointed forward.

Physically, Paul grew stronger, thanks to lots of swimming. He divined time by listening to the planes pass overhead.
Prop-jet. four o’clock
. Using planes as sound clocks, he seemed infallibly to know exactly when five o’clock came around and it was time to go inside. He was continuing to improve his speech, writing, and walking, and to compensate for his faulty vision. But the slow progress had a tinge of black shadow. I could still feel the hot breath of what-could-go-wrong. Falling still posed a threat, as did pneumonia. Swallowing pills and liquids continued to make mischief with his airways. But, as usual, concerns were tempered by moments of levity. Every day seemed to include the unusual juxtapositions of fun and worry, laughter and fear, hilarity and danger.

Toward the end of that summer, as Paul continued to roast himself in the sun on the patio, sprawled in his favorite chair before and after his swim, he grew browner and browner, and we started calling him the names of coffee beans.

“Good morning, Sulawesi,” I’d greet him.

“Hullo, Java Blawan,” Liz would teasingly chime in with another favorite dark roast.

One day I noticed something odd about Paul’s robustly brewing tan. His chest, underarms, and pubic hair had begun, ever so faintly, to blush green. Then, one hot afternoon as he climbed out of the pool after a skinny-dip, his body hair glowed the green of ghostly ectoplasm. He looked like an aurora borealis surging up from the blue, though he hadn’t seemed to notice.

Mystified, I yelped in mock horror: “It’s the Green Hulk!”

“Where?” he cried, looking around, a bit confused.

“On
you
, you’re bright green!”
What on earth is that?
I wondered, a
nd Is it unhealthy? Where have I seen that green before?

Paul inspected his hairy green arms, legs, and groin—the last especially picturesque—and let out an uneasy chuckle.

“Giant sloths! You look just like the three-toed sloths with green fur I saw in the Amazon. The ones that move so slowly whole tribes of algae and bacteria take up residence in their fur!”

“The same tree-huggers that shimmy down their stanchion to vote?” Paul asked.

Stanchion = tree. Vote = cast a ballot = defecate
. I got it.

“Yes, fertilizing their tree once a week. Creative exchange of goods and services, don’t you think?”

Paul surveyed his arms and legs as if they didn’t belong to him. I could tell he was picturing the possible colonization of his body by miniature green monsters.

“Little green men!” I warbled in my scariest voice, and laughed.

“
Aaagggh
!” Paul opened his mouth while waggling his fingers in pretend fright. But when he tried to towel the green off and discovered that it wouldn’t budge, he started to look genuinely concerned.

“I think it’s probably the chlorine, not anything like algae,” I reassured him. “You move too much for algae. Blondes have to be careful their hair doesn’t turn green in the pool. Maybe your gray hair is reacting the same way? I mean, you usually dry off in the sun instead of rinsing off. I’ve got some shampoo for chlorinated pools; let’s try that.”

And so we did, both scrubbing until he lost all of the green tufts.

“Mildred would have liked it,” Paul said with a grin, referring to his Irish mother. “A big lad of shamrock green!”

For several days afterward, Paul kept inspecting his pelt and looking a little disappointed when he didn’t find any more green. He liked briefly joining a race of reptiles and amphibians, he’d enjoyed the body pageantry. As a child, he’d always been fascinated by gargoyles, masks, totem poles, grotesques, war paint; then, as a young man, by the freak imagery of the Surrealists, and the prose high jinks of such writers as James Joyce and Samuel Beckett.

Mercifully,
word
pageantry kept returning to the household through the unlikeliest of routes. When he said funny things without meaning to, we all laughed—not at him but with him, at aphasia’s comic side. Paul was growing comfortable enough in his own altered skin to laugh at himself, too, rather than just feel frustrated. This was good, I knew, not just any path out of the silent undergrowth, but a more comfortable one.

Working hard at my desk one afternoon, without thinking, I balanced my coffee mug on a foot-high stack of papers. Paul walked in, eyeing the mug with a look of concern—it was dangerously close to the computer and piles of my notes and books.

“Do you feel attached to that mug?” he asked. I smiled to myself, knowing he really meant: “Is it
safe
there?”

He seemed greatly concerned about my safety. Whenever I traveled, he always admonished me to mind my head on the low-ceilinged commuter planes, and take care to lock my hotel room door.

Just that morning he’d remarked: “Guard against precipitous motion,” by which he meant: “Don’t fall out of bed.”

After which, Paul addressed me with the day’s
piropo
: “Satrap of the Endless Sky . . .”

“
Ni-i-ice
,” I said, crinkling my nose in appreciation.

“They’re talking about terminating the stars,” he proceeded to tell me excitedly.

“Wow. That’s quite a trick!”
Terminating the stars, holy smokes, that’s a lot of celestial violence
, I thought. I pictured a lonely cold black sky. My mind set to work on his puzzle.
Maybe stars = going to the stars?

“Do you
possibly
mean . . . ending the space program, stopping funds to NASA?”

“Yes!” he said, throwing up his hands, with a look that blared:
What a stupid decision they’re making!
After years of amateur astronomy, roaming the galaxies in his imagination, scrutinizing closeup photographs of the planets, and savoring Hubble telescope images of deep space, he felt personally offended.

“Never mind,” Paul said, quieting. “Is it sunny today?” Then, complaining about the long spell of cold rainy weather, he muttered: “April made me go insane.” He yawned, and added by way of clarification: “A disheveled April is a really hard thing to sleep through.” Then he chuckled, suddenly charmed by the silliness he’d uttered.

Despite his newfound pleasure in his own funny turns of phrase, it wasn’t all skylarking. Some exchanges, so typical of aphasia, still frustrated him no end, like the time he casually said:

“Boy, do I have a story for you!”

“You have a story to tell me? What?” I asked.

“No, nothing,” he said, dismissing it.

“You’ve decided not to tell me?”

After much confusion, he finally was able to explain that “Boy, do I have a story for you” had simply leapt out of his mouth against his will, even though it was actually the opposite of what he had meant: “I have nothing new to say.”

Another aphasic icon continued to foil and frustrate us, too. Attempting to harpoon the right words, his mind would still occasionally produce nonsense, despite clearly wishing to say something important.

“Why don’t you
smitch
the graffelklug on wentstodge?” he garbled one day while he was having breakfast.

“What did you say?” I asked in the even tone I aimed for on such occasions, trying not to make him feel self-conscious.

“Why don’t you
smitch
the graffelklug on wentstodge?” he repeated in an irate whisper, clearly knowing what he meant to say.

“Take it slowly and have one more go.”

After another aborted reply, he finally gave up and grew pensive. Then, with remarkable fluency and sadness, he reflected on his rubble of incoherent sounds.

“It’s just the soft catechism of a great machine falling apart.”

CHAPTER 31

O
UT OF THE BLUE, PAUL REPORTED FEELING BOUTS OF
calm euphoria, a mystical sense of all’s-right-with-his-life-and-the-universe, a bright future in sight. He described it as a “swimmer’s high,” because in the past he’d felt the sensation only after spending several hours in the pool. I knew well the state of vigorous calm he meant, a frequent visitor throughout my own life.

His first episode took place late one night, while I slumbered and he sat on the end of the couch, sleepily watching television. As a veil of well-being swept over him, he “saw” his two old chums—Bryan and Alistair—friends from Newfoundland, where he’d held his first teaching job fifty-five years before. At eighty, Bryan now had multiple health problems; and Alistair had died the previous year. Yet in Paul’s vision, or dream, or hallucination, they assured him that he was “doing everything right,” the din of illness would abate, and all would be fine. He felt young and fit enough to run and hurl cricket balls once more. This blissful episode lasted about an hour, but the comforting memory remained, and when he told me about it the following morning, he looked almost serene. After a few hours the tranquillity melted away.

Four days later, he awoke early, scrambled out of bed, and shot to his study to begin writing, because his cantering mind was kicking up a dust cloud of ideas. Then he breakfasted, took his meds, and wrote again. Before grabbing a nap, he reported feeling the same calm euphoric “runner’s high,” whose spell veiled him as he slept.

I didn’t tell him what I was thinking. I’d grown used to being wary of every new symptom, so I’m sorry to say that my initial response wasn’t happiness for him but worry about what might be jolting his brain into euphoria. Lack of oxygen for some reason was a possibility. Or increased serotonin. Was the Zoloft, which he’d been on for four years, leaving his body more slowly than before? He’d been unusually creative of late, and in a different way: his recent fiction was still aphasic, but it was more purely imaginary than anything he’d written since the stroke, drawing less on real people and events.

For several days more, he woke with the muse on his shoulder, and wrote six to eight pages longhand in about two hours. Ashamed as I felt for begrudging him my free-spirited, wholehearted delight, I nonetheless worried. He was being the prophet, I the worrywart, he the one with the bedrock of peace, I the
agitata
. Being responsible for someone else’s life had eroded my optimism. In the past, I mainly had my own health and well-being to keep tabs on. Now I had his, too. I had to be a reader of his signs, portents, and symptoms, a full-time savant of his well-being. Sometimes I felt like I was keeping him alive just for me, because I thirsted so for love, affection, and companionship. The primal warmth of being creatures together, loving mates, created its own powerful spell, even if he couldn’t communicate as nimbly. This meant sometimes hovering over him as I might a child—because he wasn’t quite independent, and his immune system was compromised by his diabetes and heart troubles—while also recognizing that he was not a child, and therefore giving him mental and emotional space to be an adult who made his own choices. A tough balancing act.

I was working in my bay window, while Paul was napping, when Liz came in for a consult. Her hair was now the color of tawny wheat at dawn in harvest season. Today’s flips-flops were turquoise, and she was wearing a red spandex summer dress that clung in all the right places. It was unusual for her to interrupt my work, so my caregiver’s antennae shot up. The way she stood aslant, with one foot crossed over the other, alerted me that she was worried about something, yet didn’t want to worry me.

“Paul told me he’s been feeling euphoric,” she said. “That’s nice, and maybe I’m being paranoid, but . . .”

As I slid the lap-desk forward on its shiny wooden pontoons, it glided over the window seat’s woven tableau of swans and bull rushes. Liz had rigged up the makeshift sliding desk from a heavy oak breakfast tray and two polished wooden bowls.

“Yes, he told me, too, when he woke up,” I said. “Should we worry? Do you think it’s a symptom of something we need to keep an eye on?”

“Well, exactly,” she said. “Could the euphoria mean less blood flow to the left side of the brain? Or, more optimistically, more blood flow to the right?”

We were both aware of Jill Bolte Taylor’s account of euphoria and mystical visions when she had a left-brain stroke. This was Paul’s second euphoric episode in a week. But other than the euphoria, he’d been stable, nothing out of the ordinary, except napping longer.

“He’s been unusually creative of late,” I thought out loud. “Writing with real gusto, hasn’t he?”

“The pages he wrote today were strange for sure,” Liz said, resting one hand on the counter, “odd and crazy, and I’m pretty darn sure that he’s not getting these ideas from anyone else. He’s dredging them somehow out of his own head. It’s all coming from within that little skull!” She smiled in amazement, eyes wide in emphasis.

Liz’s response amused me, because it was similar to what Paul’s mother always used to say whenever he presented her with a new book: “I don’t know how you think of it all!” But Liz was right, the way Paul was using his brain had changed since his stroke. At first he’d seemed mentally hollow, like an empty china cupboard—“Are you thinking?” “No, just sitting and staring.” Slowly, over time, he began planting one thought after another, then extending thoughts, combining thoughts, noticing images, combining images. It was most visible in the record of his writing. In his dictated memoir
The Shadow Factory
, begun two months after the stroke, his sense of time and sequence were often confused. Most of it was based on actual events, not imagination. Then he’d written a careening novel about Goebbels, for which he had watched several documentaries and paged through a couple of books, but drawn mainly on details he remembered from his lifelong interest in WWII. I was frankly amazed by how much he recalled about WWII—while his brain had trouble remembering his own birthday and the names of commonplace objects and animals. The factual essay about coffee he wrote two years later—prompted by the narcotic smell of coffee, which he was no longer allowed, but whose aroma conjured up memories of buying it freshly ground with his mum when he was a lad—was based on tidbits Liz gleaned from the Internet for him. Then he wrote a novel set in Mongolia, in which he began to include many imaginary elements, some of which were based on stories of Liz’s neighbor Gustaf, maps and guidebooks, and Internet research. Many essays and fictions followed.

Here he was in the midst of a sci-fi novel, and his post-writing naps lasted noticeably longer than before. Perhaps with the left side quieted, he was using the right side of his brain for language so much that it brought increased blood flow to the entire area, and since the right side is the wellspring of mystical experiences, it unloosed a few. Or was it a result of damage to his left parietal lobe, in the rear, at the top? This is where the brain divides the graspable from the nongraspable, the self from the world, delineating the many edges of the body, helping to orient us in space. Quieting that region—through deep meditation, or through damage—can sometimes belie the sense of inhabiting a body, and kindle vivid mystical experiences and feelings of transcendence. Paul still had trouble locating objects he meant to grasp, a hallmark of such an injury. That made the most sense, but why now, years later? He might have been sleeping more simply because he was using his brain more and exhausting it. Anxiously, I kept an extra-close eye on him, and the added vigilance gave me little rest.

The episodes of euphoria dissolved back into the mystery that spawned them, leaving us none the wiser. But a month later, Paul woke wheezy and breathless, bolting upright in bed, gasping for air. Paramedics rushed him to the hospital. One week later, after rounds of strong IV antibiotics, and the doctors never agreeing whether he’d had a heart or respiratory calamity, or both, Paul once again left the hospital for home. Adding yet another medication and a tank of oxygen at night, as if he were deep-sea diving while he slept, Paul soon said he felt better than ever.

Paul’s brain was scanned upon admission to the hospital, showing no new stroke but a scarred and ravaged battlefield. In the ER, I watched pity creep over the doctor’s face.

“What does the scan tell you?” I asked.

He pointed out the damage from the past stroke, in the temporal and parietal lobes, a large dead patch in the frontal lobe, and missing bits elsewhere.

“I’d assume this man has been in a vegetative state,” he said with a soft humanity.

“Far from it. Would you believe he’s written several books since then? That he’s been aphasic but communicative, swimming a lot, living a much more limited life, but a happy and relatively normal one?”

His face flashed disbelief. “How is that possible?” he asked quietly, as if thinking out loud. Looking back at the scan’s deadened landscape, and shaking his head again.

“Working the brain hard every day for four and a half years since the stroke.”

“I’m so glad you told me this about him,” he said thoughtfully. “It’s important to know what’s possible.”

A STROKE SURVIVED
, by definition, won’t be the last emergency. How do you get over waiting for the other shoe to drop? Sometimes all you can do is stay busy, so that the waiting doesn’t become a conscious event, only background. Paul had a gift for losing himself in work; it spared him every day. He simply didn’t dwell on his illness or his several brushes with death. I envied him that. For me, fear, uncertainty, and mystery remained. In the vest pockets of time—walking down the hallway was long enough—I felt pangs of worry. So, now and then, I powwowed with the different sides of me, and tried to gather those terrified, loving parts together, reach beneath the dread, and find gratitude for our still rich and buoyant life.

Liz began taking more and longer vacations, and when she wasn’t around, Paul and I lived alone together, the paradox couples define, and that was wonderful in its unique way. When she was present, I had an articulate, high-functioning housemate, a crazy element of verbal normalcy, a bridge to the loose wordplay of the past.

Much of our chatter still crested right over Paul, especially while he was dawning. When Paul emerged, bleary-eyed, from the bedroom one morning, for instance, he found Liz and me in the kitchen trying to remember the steps to old dances: the Monkey, the Pony, the Locomotion, the Mashed Potatoes, the Twist, the Swim. She’d been inspired by her Uncle Harold’s antics, showing off his successful double knee replacements at her recent fracas of a family reunion.

“How about the Prairie Chicken?” I suggested, angling my arms overhead like horns, trotting around the room, and scratching the floor with one foot, while singing:

Everybody’s doing it, the Prairie Chicken,

Come on baby, do the Prairie Chicken

Meanwhile Liz was doing justice to the Monkey with long-armed, almost prehensile abandon. Tossing her now sangria-red hair, she looked like the ghost of a red howler monkey.

We suddenly noticed Paul standing in the doorway, his face a scene of intricate puzzlement.

“How much coffee have you two had?” he asked dryly, with just a touch of nervous concern.