One Hundred Names for Love: A Memoir (28 page)

“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.

CHAPTER 23

I
DECIDED TO FOCUS ON HELPING PAUL LEARN TO SPEAK
, because that would most color the flow and fabric of his life. But he longed to
write
again, to enjoy the bump and clash of creating people who never were—a young woman armed with a bow-shaped mouth and a quiver of impulses, an old man with a forehead lined like a bad stretch of dirt road, a sailor with sword-shaped eyebrows, a Mediterranean beauty with pale skin and nuthatch-brown eyes. He took a twisted pleasure in baiting and goading his characters, hearing their backchat, filling their minds with whims and memories and crazy looping lanyards of obsession.

Battling hard just to speak, why did creating again matter so much after his stroke? Years later, he would tell me that it was because of the huge gap between what he could say and what he could think. Ideas inched through his speech, but they whipped around his thoughts like ice yachts.

“The contrast reassured me as to what lay ahead. It was merely a matter of lining up the two in sync, making a match between my pall-mall thought and aphasia. Would it take six months or a year, or never happen at all? This was the great unknown of my life.”

I watched him each day, laboriously trying to assemble words on a page. The penmanship grew a little better, and he knew what he wanted to say, he even seemed to know the words, but the message to his hand resulted in a stream of gibberish.

“I was extremely pissed off, unable to do a single letter, which I mauled anyway. My penmanship, that used to delight me as a masterstroke of all the ages, had dwindled into an uncoordinated heap of blurred fragments, false starts, and untidy balderdash. In a word, I was frustrated beyond belief, there were no letters left on earth for me to use.”

I mulled over the problem for a while. I wanted him writing to improve his language skills and help clarify his thoughts. But how we define an activity tints how we feel about it and what energy we’ll spend on it. Instead of
homework
, maybe what Paul really needed was a
project
.

“You know,” I idly suggested one afternoon when he was feeling especially down in the dumps, “Maybe you want to write the first aphasic novel, or a memoir.”

He looked at me with a sudden sprig of light in his eyes.

“Good idea!” he said so excitedly that the old “mem, mem, mem, mem” spilled out, too. I’d seen him pounce like this before, chasing something hare-like and hazy, sparked by the idea of a new book. It meant he was able at least to see a path before him, however meandering and uncertain. Paul writing much or writing well was beyond my expectations. But I hoped the effort would provide a lifeline to his former self, an exciting form of therapy, something to lift his mood and propel us both forward.

After Liz had left for the day, and the speech therapist had come and gone, and I’d taken Paul to the clinic for his regular blood work, followed by the bank, Paul and I finally slouched on the living room sofa, both of us tired from trying to communicate with strangers all day, including the semi-stranger he had become.

“Want to try writing about the stroke?”

He nodded yes.

When I handed him a lined tablet and pen, he struggled to scrawl something, anything, legible, drawing loose loops and wayward squiggles. A roil of anxiety and annoyance swept across his face like time-lapse photography.

“Maybe a flat surface would help? Let’s go to the table,” I suggested.

Sitting at the kitchen table, even with a firmer hand, he fared no better. For an agonizingly long minute, he twitched his hand across the paper. His pen jerked like a pointer over a Ouija board, until at last he gave up in disgust. Then, banging the pen down in frustration, he leaned back, defeated.

“No use,” he spat out.

Combing my thoughts, I tried to soothe him. “Maybe we’re asking your brain to do too much at once.”

With a pang of contrast, I remembered Paul happily writing the novel
Gala
(a tale of a man who builds a mock-up of the Milky Way) in the damp, cool, millipede-bedeviled basement of a house he’d once rented at Penn State. During that blisteringly hot summer, car metal burned to the touch. Water from a garden hose spurted out hot. Students submerged their hips in shallow creeks and drank cold beer. A few stores lured people in by promising gelatinously cold air-conditioning. On the door to each shop, a decal showed Willie the Penguin, the Kool cigarettes mascot, standing on a blue-white ice floe, below a banner that boasted:
It’s Kool inside!
We could only afford a small window air-conditioner, which we installed in the bedroom. In the rest of the house, the stagnant air flattened you like a case of the grippe. But as he listened to Paul Hindemith’s opera
The Harmony of the World
, splashing off the naked cement walls in the relatively cooler basement, Paul had barely noticed the incessant heat. The music had been inspired by Johannes Kepler’s 1619 book of the same name, in which Kepler decoded the harmonics of the spheres, and Paul was imagining the sound of Kepler wheezing in tune to the sublime mystical notes of Hindemith’s opera.

Wishing to taste the raw collision of the spheres rotating in their musical rounds, Paul was traveling through the absolute zero of deep space as he nailed strips of balsa wood into a four- by two-foot rectangle, which he covered with a sheet of sky-blue paper. Then he opened up his star atlas and studied his favorite constellations—Lyra, Betelgeuse, Coalsack—as if they were nudes posing for a life drawing class. With a steady hand, he painted the color of each star onto a push pin and stuck it in place. Between episodes of galaxy-making, he wrote at a large oak desk.

“Cold drink?” I’d called down the steps, and arrived with a glass of chilled lemonade.

“Listening to Hindemith?” I’d asked, stepping over a centipede on the cracked gray cement floor.

“Hindemith-ently . . . You know, what always strikes me is the silence of the universe—but when you approach its component parts all you hear is roaring cacophony!”

How easy it had been for him, then, to mix the flame of this or that composer into the celestial stew.

Compared with the fix he was in nowadays. Neither hand really functioned, and his mind kept drawing zigzags. His brain didn’t know what it was doing, or if it knew, it wouldn’t tell him.

To write, Paul’s brain needed to organize his thoughts, connect what he was thinking to the right words, figure out how to spell those words, then instruct the hand how to move to make the letters for each word, as well as tell the eyes to compensate for the now-invisible right edge of each page. That required so many different processes. I wondered if it might help if he cut out some of them.

“Let’s go back to the couch and
I’ll
write it down for you,” I offered, “and I’ll ask you questions.”

Then all he would need to focus on was tethering words to thoughts. If that didn’t work, maybe it was too early, and if he liked he could try again in a few weeks. Or maybe it wasn’t such a good idea after all.

Paul nestled into his favorite corner, and I stretched out facing him, holding one of the many journals I collected for note-taking. One with a soft, velvety purple cover. Purple, like the purple prose that used to flow from his pen. But how well could he think without language? As different as it is from the outside world, language provides a guidebook and streamlines our observations. The Korean language, for instance, uses different words, depending on if an object fits snugly inside something (letter in an envelope) or loosely (golf balls in a pail). And, as a result, Koreans are better than other cultures at
discerning
a tight fit from a loose one.

Not that language can express everything we mean to say. Nature flows indivisibly as one stream of atoms; we divide and structure it with our words. But at the end of every utterance, however eloquent, remains a silence buzzing with everything we’ve omitted.

“When you’re silent, I know you’re still thinking—are you thinking
in words?
” I began by testing the waters.

“Yes,” Paul said decisively. “Head full.”

“Head full,” I wrote on page one of the lined journal, and gently riffled its otherwise blank pages—around fifty, I reckoned.

Since the stroke, I’d often wondered if he still had a running interior monologue, the way people normally do. It seemed as good a time as any to ask: “What do the words in your head sound like? A voice speaking?”

I followed his gaze to the ceiling where a small spider was descending hesitantly on a fine-spun thread.

Paul thought a while, then said: “No,
three
voices.”

“
Three voices?
” I was floored.
How strange. Where did the different voices come from?
“What do they sound like?”

He screwed up his forehead in thought, then after a few moments, face clouding, he moaned, “I can’t explain.”

“
Who
do they sound like?”

His eyes drifted to the right as he concentrated. “One . . . a BBC announcer,” he told me.

“A BBC announcer?” I thought to myself:
Now that’s an answer I didn’t expect!

“Yes.”

“And the other voices?”

As if opening a rusty tap, he said in a slow, jumpy spurt of words: “F-f-first there was t-tone . . .
alluvial
. and well-bred. of BBC announcer . . . John. John. John . . . Snagge, who regaled him w-with won-wonders. wonders. of world in distant, correct . . . accent. word-perfect. and slight-slight-slight
ly
snooty. This f-followed most cases by the voice sp-spouting gibberish. Then there was voice. of himself. almost . . .
lost
. . . ampule, ampersand,
amid
barrage of suppressed verbiage. But re-re-gained as other two hundred, no,
two
, receded into blank of servitude. He had. leer . . . learned to speak again by some m-m-magic. which. owed . . . owed . . . oh,
something
ff-first men . . . planet, and would parsnips, no,
p-perhaps
be the b-birth-birthright . . . of all those . . . sufferers from aphasia to f-fol-follow.”

Paul fell silent. This was the most he’d spoken since his stroke, and I wanted to let him rest. But I was stunned wordless, holding my breath, wondering if he could possibly rattle on. Even though he stumbled and faltered, and needed help capturing some words, his tale would have been striking in anyone, let alone an aphasic. That three people haunted his thoughts was certainly surprising. He always did have an inner word-slinger busily spinning long sentences and dialogues, and I assumed
that
was the voice he identified as “himself. almost,” who, long ago, needed more elbow room and leapt onto the page. But, more puzzling: Who was speaking so well
about
the three voices? For that, Paul had to be engaging yet a different spectre in his head. That had struck me as especially odd, and I couldn’t resist asking him about it.

“Why are you talking about yourself in the third person?”

“I sounded . . . different from
myself
. The
people
who spoke in my head weren’t me.”

“Can I hear a voice?”

“Saying what?”

“Anything you like. How about Snagge?”

In the diction of a BBC announcer, he smoothly said: “The Royal Air Force in this operation lost eleven fighters.”

“What did Snagge
sound
like inside your head saying that?”

He paused. “He spoke . . . spoke . . . as if denying the right of the bombers to. to . . .
exist
, relegating them to chandelier stab,
no
correctly intoned v-v-voice of the lost. So didn’t seem plants, no,
planes
had been lost. at all. but were p-prom-promoted to the haughty, no, high, no,
highest
ring.
range
. of mystical beings.”

Then, commenting on what he’d just said, he added: “H-hhow’s that for burr-burr-brand of speech which denies. what it presents? S-s-snagge really. really. spoke like that . . . achieving . . . speech mannerism . . . clo-close. to. dizendisembodied . . . without . . . any any any . . . mustard, prettiness. or effervescence.”