CHAPTER 22

SOMETHING I FOUND ESPECIALLY ODD, BUT ALSO merciful, was that Paul’s temperament had sweetened since the stroke. No longer dealing with the frustrations of teaching or publishing, he wasn’t waking up in a high blood pressure rage, or barely containing a volatile anger. When we met, he’d been a charming alcoholic with a violent temper, a James Joyce sort of artist with a sparkling gift for words. I’d grown used to never knowing when Paul would explode. But he wasn’t always combustible; most times he was quintessentially loving, a real sweetheart. The lurking land mine was part of a pattern: his unpredictable explosions, my fright and crying, our coming apart, his regret and promises, my forgiveness, our reunion. For years of our marriage, I’d walked on eggshells around him, because it took so little to trigger what he described as his “Irish temper.”

Not now. Surprisingly, his temper vanished a few weeks after the stroke, when he became mellower, more patient, deeply appreciative, and I felt grateful for his new twist of mind. His struggles and goals weren’t competitive, he was swaddled in overt love and encouragement, and he was taking an antidepressant for the first time in his life (50 milligrams Zoloft). The combo—plus whatever had happened in his brain during the stroke—produced a sweeter, less stormy Paul, which I found wonderfully welcome.

Such a spirited change is not unusual. Personality can about-face after a stroke, sometimes for the better, sometimes for the worse. A placid soul can become impulsive, angry, irritable, anxious, or emotionally flattened. President Woodrow Wilson, who suffered a stroke during the Versailles Peace Conference, is one dramatic public example.

Even though the stroke didn’t paralyze him, the people who knew him saw an immediate negative change in his personality. He was irritable, inflexible, and spiteful, whereas before he was forward thinking and able to compromise. He also became less sociable. Several weeks after the first stroke, he had another one that paralyzed his left side. Despite his obvious infirmity, he denied having any problems (denial is very common). . . . Those around him became very distressed. He fired his secretary of state for trying to discuss his medical situation with the cabinet. His stroke may have involved setting the stage for World War II. After his stroke, he could no longer argue effectively for the League of Nations.

—Daniel Amen, Healing the Hardware of the Soul

Did Paul’s personality change owe more to the stroke or to the circumstances following it? Hard to say. What we call “personality” doesn’t exist in isolation; it defines itself by how it interacts with others. It’s not an impervious phantom, but interpersonal; and, since the stroke, his relationships had all changed. A bit paranoid before, he now found people acting more caring, forgiving, and encouraging. In this one way, Paul’s changing psyche felt better for me, even despite the heart-wrenching loss of my intellectual companion, because he was able to love me more completely. So perhaps I persisted, not just to keep Paul alive, or even to keep myself from experiencing loss, but because in some ways he finally was more alive for me.

But as my energy continued to flag, I realized I couldn’t meet my work deadlines. I would need an extra year to finish The Zookeeper’s Wife. And I would need to cancel spring and summer talks and readings. Although I’d promised to write a regular column for Discover magazine, I emailed the then-editor, Steve Petranek, explaining about Paul’s stroke, and that I hadn’t the time or energy for work. Steve replied with an encouraging account of his father, a conductor and accomplished viola and violin player who had had a stroke at about the same age as Paul. Steve’s father had also lost his ability to speak. Actually, what he lost was his English vocabulary—he could still speak the Czech he had learned as a boy growing up in a Czech community in Cedar Rapids. He never regained his mastery of the viola, his favored instrument, but after relentless physical therapy he became remarkably better than he had ever been at the violin (even though the two instruments are quite similar). Meanwhile, he began tackling children’s crossword puzzles. By the time he died, he was back to enjoying his daily New York Times crossword puzzle. A testament to the power of plasticity and practice.

From Petranek, I learned that a person has to hear a word repeated about two thousand times before it’s deeply embedded in long-term memory. On an index card, I jotted down a list of everyday words Paul was having special trouble with—such as Paul, Diane, drink, checkbook, hummingbird, wallet—ones seemingly erased from his universe, and I began including them in sentences as much as possible.

“Do you think hummingbirds have checkbooks?” I asked Paul one day. He laughed, nodded yes, and drew the tiniest oblong checkbook in the air. Ten times in a row I had him repeat checkbook. Half an hour later, he had already forgotten the word, as if his brain had written it in invisible ink.

“Look! At the feeder, there’s a bird—what is it?”

Fumbling for the right word, but failing in his quest, he produced something which he didn’t understand: “Zinc quadrant.”

“No, it’s named after the carefree sound it makes,” I hinted. “Hhhh . . . hummmm . .. innng .. .”

“Hummingbird!” he chirped triumphantly.

“Right! Hummingbird. I wonder what hummingbirds keep in their wallets. Pin-ups?”

“Sugar?” he offered.

“Where’s my . . . fool’s cap?” he then asked unexpectedly.

Fool’s cap? I thought. Does he really mean a court jester’s hat? I pictured the gaily colored cap with many peaks, each tipped by a jingling bell. Or—and I feared this was more likely—did he mean a dunce cap, the paper cone slow students were once sometimes forced to wear?

He made a writing gesture. Of course! Heavyweight paper. The original manufacturer of it had used a watermark of a three-pointed fool’s cap with little bells. It was years since I’d glimpsed that watermark. But surely he remembered where the paper was—I’d seen him taking some sheets from the shelf in my study only an hour before.

“Do you possibly mean checkbook?” I tried.

“Yes!” he said with relief, and I led him to the special drawer where he kept his checkbooks.

Sometimes these non sequiturs were funny, but at others simply awful, jamming his brain when he most wanted to communicate.

“The second stage of yawning presses down on my feet,” he complained one morning after much hesitation and false starts, in which words caromed like bumper cars. After hard digging and what he called “blockades,” and many yes/no answers to questions designed to help him sort the words into general categories, I finally understood what he was trying to say, something homely and mundane—that the soft green blanket I’d added to his side of the bed the night before had felt too heavy on his feet. Simple words like “blanket” and “bed” were still eluding him. I added them to my growing list of words to repeat often during the day.

Around this time, for some reason, I began addressing him as “wombat.” Though not entirely strange, since we always did have lots of totemic names for each other, “wombat” was a sparkling fresh new endearment. I showed him a photograph of adorable baby wombats, wombats digging holes with their long claws, and two fluffy wombat mates sleeping together in the sun. An Australian friend sent us a fleecy stuffed toy wombat, whom we named Woodrow, and who assumed a regal position on the purple swooning couch.

Snuggling in bed one morning, I said to him, “Good morning Mr. Wombat.” And he echoed: “Good morning, Mrs. Wombat.” He was often wonderfully more fluent then, half awake, with no pressure on him.

Sleepily, I posed the question: “Hey, I wonder what Mr. and Mrs. Wombat’s first names are. Let’s see. His name is . . . Hydroelectric . . . Hydroelectric Wombat. And hers?”

He thought for a moment. “Clopidogerel,” he said.

“Clopidogerel?!” Where did that come from? It slowly dawned on me: it was a drug name he must have heard in a television commercial. “Right—Hydroelectric and Clopidogerel Wombat. Do you suppose they have kids?”

“Six,” he said. “Half, half.”

“Three boys, three girls?”

“Yes.”

“Well, what are their names?”

At this he began giggling, and finally said “German . . .” He couldn’t find the next word, so he made a diving motion with one hand.

“Airplane?”

“No.” His hand plunged shallowly this time.

“U-boat? Battleship?”

“Yes!” Eyes lighting up. “But sick.”

“They named their kids after sunken German battleships?”

With a wicked smile, he said: “Bismarck, Graf Spee, Tirpitz . . .”

We began laughing uncontrollably, me from the sheer relief of hearing him play with words again so imaginatively, as we pictured Hydroelectric and Clopidogerel Wombat introducing their six children named after sunken German battleships. When we finally emerged from the bedroom at last, Liz, who’d arrived for the morning to help with Paul, asked with a grin: “What on earth was going on in there?” Still giggling, we had a splendid time explaining.

After a stroke, play is the last thing on a couple’s mind, but it drew us thankfully together in innocence, it felt so good to laugh and romp with words together again.

After lunch, Jeannie and Steve joined us for a short visit, and conversation turned to TV’s Catholic nuns. Steve’s elderly mother was devout and watched Sister Angelica all day long, which meant that whenever Steve visited her, as he did almost weekly, he was subjected to a Sister Angelica marathon, too. Paul unexpectedly described Steve’s mother as a “holy constabulary,” dissolving us all into peals of laughter. A banner day. Laughter really is a wonderful elixir, and it can be hard to find in the shadow of misfortune.

After they left, and Paul began sundowning, the house felt familiar and silent. We sat purposely listening to the silence, broken now and then by the liquid marbling of birdsong. The sun had begun dusting the treetops with crimson.

“Do you dwell on things a lot, brood?” I asked Paul.

“No,” he replied. “Watch trees. First time I’ve noticed how gorgeous. So tall. Lots of different.”

“So many voluptuous shades of green,” I said, and he nodded yes, approving of the word “voluptuous.”

“The plants are fluorescing,” he observed appreciatively.

I imagined leaves with the beauty of fluorescent minerals, glowing like brilliantly colored neon flowers. Or maybe he was picturing the fluorescent fungi in the woods, whose visible part, the “mushroom,” looks innocent enough, but whose tentacles invade rotting wood and glow an eerie green, making logs shimmer like they’re burning inside. It always amused me that mushrooms, lightning bugs, and trick-or-treating children with “light sticks” are all lit by the same cold green fire.

When he was a boy, Paul once had a chemistry lab that included the mineral fluorite, whose crystals scintillated in the dark. Envious, one year I requested that he give me “a British boy’s Christmas,” and was delighted to receive a boxed chemistry lab (nothing that fluoresced, alas), a plane-spotting guide, and an Erector set (with which we built a battery-operated wagon that sometimes buzzed down the hallway carrying the mail).

All Paul meant on this occasion was: “The flowers are blooming.”

I felt guilty when I wasn’t with Paul at such quiet moments, just for company, although I had stacks of work to do. It was difficult for me not to imagine his being hideously bored, but I came to realize in time that, on the contrary, he was calmly living in the moment, which flowed into the next without necessarily being tethered to the one before.

As he would tell me much later, “The casual observer must have thought me unable to think. But wrong in the extreme: I was living in the aphasic moment, silenced, but with whatever internal organ I possessed thinking hard and fast. My brain was alive and kicking me in the pants. And thank god for it, for giving me a way through my enforced silence.”

We began quietly talking, an easy togetherness that felt good.

“What is a stroke?” he asked yet again when I mentioned the word in a sentence. So many times before I and others had told him what had happened to him. And he knew the word stroke, but couldn’t seem to retain what it meant, that a clot had broken free and lodged in his brain, cutting off the blood and oxygen to some regions and cells. For him, the definition was elusive, not a sentence but a cloudscape.

“In your case,” I reiterated, “you’ve had damage in the left frontal and temporal areas, known as Broca’s and Wernicke’s aphasia.” I pointed on my head to the regions, then launched into the familiar litany of what aphasia can and usually does produce.

—Struggling to get every word out.

—Difficulty finding the exact words you want.

—Talking in ways its hard for people to follow.

—Getting stuck on certain words or phrases.

—Thinking you’re talking perfectly well, when you’re not.

—Having trouble following conversations, especially if you’re tired or anxious, or if someone speaks too quickly, or uses long sentences, or if there’s lots of noise.

—Trouble understanding what you’re reading, especially if it’s long or complicated; getting mired in the details.

—Inability to write things down, spell, use numbers, do math.

All the symptoms I spoke of he had experienced, and it seemed to relieve him to discover that these features were normal, predictable, and much observed in the million or so people who had acquired aphasia. I repeated that this condition was not curable, that he would not return to 100 percent of how he was before, but with any luck and hard work he might return to 80 percent, and that would be great. I said he was lucky.

“My brain is fractured . . . I don’t feel lucky,” he countered, looking sickened by the thought, as if from a bad smell.

“I know. And you’re not lucky to have had this stroke. But you could have died, been severely paralyzed, incontinent, stayed totally wordless. People often do.”

“And hard for you, too,” he murmured. Stroking my hair, with a faraway look in his eye, he said: “Poor little sweetheart, tell me what.” His voice bore a long-silenced note of regret.

I teared up, and he held me tight.

“It’s been life and death with you.” As the words tumbled out, I was grateful for the chance to explain. “You’ve been sealed inside, people usually are after a stroke; and I’ve had to be all outside, fussing over you, doing for you. There’s been no time to work or even be alone and relax. No play time, calm time, worry-free time. No room of my own.”

“You worry, worry too much about me,” he said with a pronounced shiver, as if wishing to be rid of the thought. “What do you need?”

Before I could answer, he blinked hard and opened his mouth, ready to speak again. Then, juggling words like small sharp sabers, he urged: “Every zenith, you, must hie to your room and author something, anything. . . . What do you want . . . to chalk?”

I liked zenith for day, hie for go, author and chalk for write. Then, unexpectedly, curving toward me with a gentle laugh, he asked: “How is your new book doing?”

“I really don’t know,” I answered, and that surprised him. “I’ve lost touch.”

Always a spirited supporter of my work—who used to advise me on publishing, understand my scarcity when deadlines loomed, and even enjoy helping me choose the right outfit for a reading—Paul now encouraged me to renew contact with my editor and agent, maybe go to New York and visit with them and friends.

When I finally did decide to fly to New York for a couple of days, I fretted incessantly about leaving Paul alone at night. It would be the first time. Was he safe?

“I’ll be okay,” he insisted. “No problem.” He sounded quite convinced that he could look after himself. This was total denial. If he didn’t know it, I certainly did.

“No problem? Are you kidding?! How about the meds? The insulin?”

“Liz.”

“She’ll only be here during the day. What if you fall?” I knew all too well that falling was the number one cause of death among the elderly. It was how his mother had died. Startled by a visitor, she’d fallen off the stool in her kitchen and broken a hip, after which lengthy bed rest brought on pneumonia.

“I won’t.”

“Or have an emergency?” His vision was bad enough that he could easily burn or cut himself. Since the stroke, he sometimes found it hard to pick out the details in a scene, even though he might see its general shape. Although he could detect motion and recognize what an object was, when he reached to touch it, his hand wandered in search of the phantom object. He seemed to have trouble pinpointing it in space. This misreaching meant he often spilled liquids, and couldn’t be trusted to use the stove. When I asked him to look at an object, his eyes hunted to and fro until he chanced upon it. He misreached, and he mislooked, which again suggested lesions in the section of the parietal lobe that governs the brain’s where system, the mechanism we use to locate things in space.

And there was always the risk of his heart acting up. Of course, this had been a possibility for the past twenty years, but now, especially if he was sundowning, could I trust him to have his wits about him enough to hit the 911 button?

“I won’t. I’ll be okay.”

We both agreed the sense of independence would be good for him, and the sense of freedom would be good for me. So I decided to go, though only for one night. Elaborate preparations began. Liz would arrive at eleven, just before Paul usually woke, and stay until about 6 p.m. That only left the evening, night, and morning to worry about. We put an Ambulance Alert sheet on the refrigerator door—a form containing all of his medical essentials: medications, conditions, doctors, and emergency contacts. His medications went into a clearly labeled plastic bin on top of the refrigerator, with a list of what drugs were to be taken when. Pills would be set out in the normal way—breakfast, lunch, dinner, and late-night doses in separate small bathroom cups. Just in case he managed to spill, which wasn’t out of the question, an extra set of pills sat on a dinner plate in the library. The large button phone, stationed in the living room, was programmed to call me, Liz, or 911 at the touch of a button. However, it didn’t have an answering machine. That was on a cordless phone in my study. I put bright pink tape over the button he needed to push to answer, and we rehearsed his listening for who was calling, and how to answer if he wanted to speak. And we agreed that we’d talk often, just as we always had. We were well organized, but there was still the jagged uncertainty, the diabolic what ifs to worry me.

When separated, we’d always telephoned several times a day, and usually teased, flirted, shamelessly plighted our troth, shared news, poured out our woes. Now I phoned home often, as before, but Paul had trouble remembering how to operate the cordless phone, and then he stuttered, unable to find the right words, until finally falling silent. It became painfully clear that when I traveled, we couldn’t keep in touch the comforting, chatty way we had grown used to. Paul ended up being safe this trip, and for the most part on other trips, when my book was published. Slyly, not wishing to worry me, he and Liz always waited until I returned home to reveal anything “exciting” that had happened while I was away (such as inflamed lungs from aspirated fluid, or an infected splinter or shaving cut). My thoughts nonetheless hovered around home, and as I idled in airports I often caught myself worrying if he was okay. Had he slipped on the pool ladder? Fallen en route to the mailbox? Remembered to take his all-important blood thinner at night?

I relished my free time, and Paul treasured his increased independence, but it came with a price—pockets of foreboding, worry about factors I was too distant to assess, and a painful new truth. One more link I hadn’t realized I’d lost—our telephonic inseparableness. Now our phone calls were short, less playful, less intimate, and without that lifeline I sometimes felt strangely unreal when I was on the road, as if I were somehow disappearing. Knowing that a loved one’s reveries enfold you can feel so reassuring. Even if they’re not thinking about you at a particular moment, you still exist in their mind. Touching voices by phone, we had always insinuated our arms down the lines or across the air-miles and held each other close. Without that ethereal embrace, home felt like a distant star.