One Hundred Names for Love: A Memoir (11 page)

I doubted Paul was replaying that memory right now, just grabbing at a curse from childhood days, one he’d often heard on the lips of Eckington’s coal miners.

I offered him a hand to hold, and he took it, gently squeezing, with a forlorn look in his eyes. He slumped back against the bed, a shallow and shrunken figure, digging at the mattress hard with one knuckle. His eyes said he felt lost and ridiculous. As Paul would one day, after valiant struggle, put it in words:

“Many people would be forgiven, I think, for relegating such an individual to the trash heap of history as someone who had failed and been found wanting, or who had achieved a brief prominence and then sunk into the ruck. Who is this? they would utter, who once was so demure and now is so dreadful. Is he human at all with his crossbow eyes and his elephantine stance? Is he deserving of pity or some other outlandish emotion, or should we pass him by? What is wrong with him? We would prefer not to know. Despite whatever agony he feels, we would seek the company of happy convivial people rather than molder in his crude animal sedan.”

Crude animal sedan
. Yes, I could picture it well, the woolly vehicle that encloses a wild animal’s spirit, the clumsy movements and barbaric yawps. The rough aphasic façade hiding Paul’s artistic soul.

CHAPTER 9

A
T HOME I SCOURED MY LIBRARY OF BRAIN BOOKS FOR
everything I could find on aphasia, and then retreated to the bay window, literally my seat of learning. With Paul in the hospital, it became a refuge now more than ever. In I climbed with a stack of books, hoping to find some answers at least, if not solutions. Two I’d recommend for introductory reading are:
The Aphasia Handbook: A Guide for Stroke and Brain Injury Survivors and Their Families
, by Martha Taylor Sarno and Joan Peters—an essential guide from the National Aphasia Association; and
Coping with Aphasia
, by Jon G. Lyon, addressed to patients and caregivers alike, explaining what to expect, chronologically, with aphasia. In Further Reading, I’ve listed some other works that I found uniquely helpful, insightful—or both.

I learned of aphasia’s first mention, on an Egyptian papyrus from the third century BC, the earliest known medical document, a textbook on trauma surgery. The papyrus refers to a man with a head wound, a nosebleed, “and he is speechless. An ailment not to be treated.” Yet the ancient physician suggests that rubbing ointment on the head and pouring a fatty liquid into the ears will be beneficial to the patient. Paul would have loved that—including Tea with Osiris, he’d written two books set in ancient Egypt. I chuckled to myself as I pictured the fun he would have depicting the bleak absurdity of the scene, then somberly remembered that I couldn’t share with him, as I usually would, any of this history, or the hieroglyph for “he is speechless”:

To me the three symbols looked like
bird, whip, tent
, and in previous days I would have devised a silly translation (“Flip the bird at me and I’ll whip you intently,” or maybe a film trailer for T
he Maltese Falcon
), to laughingly present to him to counter with his usual wit, but Paul was no longer able to play such games. Words had been his pastime, solace, and obsession for so many decades. How on earth would he now pass the time? More like let time pass over him. Surely his days now held more hours than before, idle hours alone and with no words as windup toys.

I imagined Paul’s mind as a blackboard on which all the words had been erased, but it was more like he was being locked out of the classroom. The words were all in there, jumbled as they might be, and they had been scrambled into an alien language. His brain couldn’t attach the correct word to things, and couldn’t select the best words for what he felt. But he most likely heard words trickling relentlessly in his head, and was drowning in a stew of words.

The books explained that aphasia is not the loss of language, but a retrieval problem, a sorting problem. Words crowd one another, and very often the wrong words are the only ones the mouth can utter. Remembering a word takes two steps, pinpointing the word you want, and then retrieving the sounds for the word. It’s possible to fetch only the first part, and not be able to remember how to say it, due to weak connections. Or just clutch at word fragments. I’d sometimes pursued such “tip-of-the-tongue” words myself, usually aware of their architecture (tall or low letters? beginning or ending sound? polysyllabic?), without being able to retrieve the whole word, so I appreciated his frustration. Paul knew what he wanted to say, and his brain’s dictionary was still intact, but its cover was glued shut. I had to keep reminding myself that an adult still lived inside his head, only his wiring was injured, the connections were frayed.

An email to a friend at the Dana Foundation produced the name of a stroke specialist, and I contacted the doctor, who replied soon, saying he would be glad to look at Paul’s MRI. But because Paul had a heart pacemaker, he couldn’t risk an MRI; the force of the magnet would have scrambled the titanium pacemaker’s settings, possibly triggering a fatal rhythm. Nonetheless, I could send the less precise CAT scan. All I could ask for was a prognosis. But did I really want to know? Dr. Ann had wisely advised me to “prepare for the worst, but hope for the best.” The cardiologists, neurologists, and other specialists I’d spoken with at the hospital implied that he wouldn’t be writing books again, and probably not speaking or understanding much either. The damage to his brain had been too sweeping. A grim forecast. What if yet another specialist told me the same? How would that affect my attitude toward Paul? If I knew his limits, would I give up hope? Would I bother trying?

Desperate for some clarity, I felt as if I were in a labyrinth, with no view beyond the narrowing hedges. If only a few could be pruned away. I longed for a prophecy from the stroke specialist, not because it would change anything, but because such foresight would bring me a little certainty at a time of agitated doubt, barely informed decisions, fear, and bewilderment. Our future and my life would seem less haphazard. If nothing could be done, why subject him or me to even more ordeals?

On the other hand, if I didn’t know, if I could live with the indefinite, who knew what might result? A brain can learn to make do, improvise, rewire, recruit neighbors to a new purpose. Dead neurons may not be able to regenerate, but damaged ones are plastic and can grow. Healthy ones can take on new duties. New neurons can arise, even late in life, and migrate to where they belong. A brain is a resourceful captive. We haven’t fully explored its sorcery or frontiers. It can “give to airy nothing a local habitation and a name,” as Shakespeare puts it so beautifully in
A Midsummer Night’s Dream
. So why not try everything? Could rookie cells be drafted—however slowly, and probably with harrowing effort—and, if so, would they serve as well? Perhaps I had irrational hope for Paul. But he had a couple of important traits going for him. Because he had wordsmithed for seven decades, he would have forged more brain connections for language than most people. Also, he could be diabolically stubborn. I decided not to send the CAT scan. The knowing, I told myself, is only a vapor of the mind, and yet it can wreck havoc with one’s sanity.

One of the books I dipped into was C. S. Lewis’s
A Grief Observed
, a rich, precise, emotionally candid account of the ordeal he went through as his soul mate, Joy, lay dying of cancer, and the mountain of grief he felt after her death. Because he bled so intimately into the prose, he published it under a pseudonym. I identified with much of the book, especially this: “There is spread over everything a vague sense of wrongness, of something amiss.” Yes, that felt right. An atmosphere of wrongness. I was stirred by the power of Lewis’s grief. And yet, his experience, despite his referring to it as “mad midnight moments,” didn’t lead to madness. His was a mind that could cushion itself when faced with trauma, without becoming callous, neglectful, or numb to soften the pain. Despite not knowing if what he felt from moment to moment would pass or last forever, he entered fully into his shifting states of violent rage, self-pity, longing, heartbreak, cynicism, without losing the ability to think about what was happening to him. That took courage, I thought, living with the suffering in a mindful way, as an artifact of being, neither good nor bad.

I’d already noticed how my own voice had changed: losing some of its sharp peaks and bounce, and gaining firm new ridges. My phrases were smaller, slower; my rhythms thick and clumsy, not light and dancing. I now seemed to quarry words, one by one, presenting them like bright bits of jasper—not slurred in a wash of flurried adjectives—when I spoke to Paul. Sometimes with a flutter of agitated worry that felt like a beetle was trapped inside my ribs. But I savored the delicious warm touch-ribbons of silent affection, uniting and comforting us, even when words failed. And I followed the stew of sympathy from friends, whose faces flickered with unrefined sorrow-compassion-pity.

Could I continue to woo life, despite the abysmal sadness? Surely Lewis had more courage than I possessed. How tempting to live in limbo and wait for my real life to return. But this was my real life now. Life is a thing that mutates without warning, not always in enviable ways. All part of the improbable adventure of being alive, of being a brainy biped with giant dreams on a crazy blue planet.

“All part of the adventure,” I often reminded myself, “all part of the adventure.” Repeated out loud like a mantra. Felt at times like a hoax. At others it became a balm of understanding to spread across a mind in misery, one of the many transparent liniments for sprained emotions that humans rely on. Like hope. Or faith. “All part of the adventure.”
One that began with blue-green algae, I thought. No, farther back, in volcanic verdigris on the ocean floor. No, farther back still, to where our atoms were forged in the spinning, spitting, detonating furnace of the sun. No, much farther back in space-time.
That meant picturing things before the Big Bang, when the entire universe was all in one place and solid: a small silky nugget of hydrogen floating in an endless void. The effort would gently tug my mind from suffering to curiosity. Only for moments, of course, but that’s all we ever have, a mass of moments, currents of being.

Ironically, Paul and C. S. Lewis had once been in correspondence, around the time Joy was dying, still a young woman. Death made quick work of her half-quenched mind. How on earth did Lewis, as caregiver, manage to correspond with people, or even spend time with friends? Would Paul’s stroke create a great distance between me and my friends because now we always had to include it in our intimacies or business, always had to include this massive sadness? At the farmers’ market, for example, I bumped into several friends, as one often does while strolling among the stalls of fresh local produce, crafts, and ethnic foods.

Each person immediately asked: “How is Paul?”

In the past, they would have asked: “How are you?”

I told myself that there were going to be shifts in my relationships, meaningful shifts, and that those who loved me would shift along with what was going on. That was my hope.

To one friend, a photographer of local landscapes, I said: “I need a break from Paul; let’s not talk about it. What are you working on?”

But Paul’s stroke elbowed into most of my sentences; every topic seemed related to it; I was immersed, I couldn’t banish it from my thoughts, much as I wished to. It was a kind of hypnosis, not just a trauma, and it bore all the tooth marks of unshakable obsession.

WHEN I RETURNED
to the hospital, I found Paul listless and sad.

“Die,” he said solemnly.

My already faint spirits sank even lower. I heard Kelly’s voice in the hallway, on her way in for the morning’s speech therapy, and I caught her before she entered the room, warning her in a whisper that he was feeling very low and didn’t want to live.

“How are you doing this morning?” she greeted Paul with achieved cheerfulness.

He shrugged. In a practiced motion, she tilted his bed so that he could sit up.

“Ready for speech therapy today?” she asked anyway, flashing a small reassuring smile.

He nodded a resigned yes. Kelly was irresistible. With close-cropped blond hair, blue eyes, and petite build, she looked like a high school cheerleader. Though she seemed upbeat and hopeful, her smile always appeared genuine. No small feat that, knowing the plight of her patients. Kelly didn’t expect to see her patients fully recover, that wasn’t the nature of her work. She smiled the smile of someone wedded to the incomplete, used to working with badly stricken stroke victims. Paul responded well to her ease and expertise.

When she asked him to pronounce the vowel a on cue, even with her coaching he only managed it 50 percent of the time, often by sighing or yawning first. She showed him how to stretch his lips into an
e
, an
i
, an
o
,
a
u
. As children, we learn to tug the strings of facial muscles—curling or flicking the tongue, pursing or yawning the mouth—babbling, mimicking, somehow coordinating the whole lot. We practice with gusto, parent guidance, and endless repetition, until the brain gradually stores an unconscious memory of how the tongue and mouth must dance in unison to voice a word. Even after seventy-five years of daily use, that marionette can lose some of its strings. It seemed impossible, but Paul had to relearn how to sound out the alphabet again, sculpt the mouth, aim the tongue, work the bellows of the lungs, just to say a small owlish word like
who
.