One Hundred Names for Love: A Memoir Read online

  Of course they’re not as rigid as all that. Both halves of the brain cooperate, on math, language, music, emotion, and other curious enterprises. Most people blend left and right brain use so fluently they’re not aware of the divide, or that one side toils silently while the other is questioning nonstop. Some people use both sides equally, in others one side dominates, but what we call mind isn’t so much a duel as a collaboration, in which the brain relies on vital checks and balances. I worried that Paul’s severely injured left hemisphere might be eclipsed by his right, with little to offset the glacial sadness he felt. Not just because of his new circumstances, which would be depressing enough, but simply because his brain had a crippled cheerleader.

  As evening fell, sunlight flickered across the window like a rumba of snakes. For a long while, Paul and I stared at the illuminated frame.

  Then, turning toward me, he pleaded, “Home.”

  “You can’t leave yet,” I insisted again. “Not until you’re a little more stable. I’m sorry. . . .”

  Extending both arms toward me, he drove them down sharply, as if planting something.

  “H-h-here!” he said, again begging me to stay.

  Pale with fatigue, I explained once more that I was bushed and had to leave for a few hours, if only to sleep a little.

  “Look . . . at . . . me!” he whispered with a derisive laugh.

  His isolation, boredom, and fear were an avalanche for him. And it was also bone-crushing, mind-crushing, soul-crushing for me.

  That poor brain of yours, I thought. Now with small graveyards of cells. As Paul grimaced, repositioning his pillow with one hand, I wondered if he had any idea what I was thinking.

  I wasn’t sure what mood I’d find him in the next day, but as he yawned and finally grew heavy with sleep, I knew he’d pass the night safely.

  “I’ll come first thing tomorrow morning,” I reassured him, too bleary to try to explain further.

  Before I left I asked the nurse on duty to keep a close eye on him, and wrote a pleading note to the head of the Rehab Unit, reporting that Paul was terribly depressed and talking repeatedly about killing himself. I knew that, in Paul’s eyes, in losing his words he had already died, all that remained was killing the empty husk. Even though his brain hadn’t settled down yet, and we didn’t know the full extent of its injury, I asked if the doctor would consider starting him on Ritalin and Zoloft immediately, two drugs sometimes prescribed after a stroke; I’d read of promising results with both.

  Ritalin has been shown to stimulate the prefrontal cortex, the brain’s executive suite, which plans and analyzes, and in clinical studies, patients who took Ritalin thirty minutes before language therapy sessions made faster gains. Zoloft helps with mood, but that isn’t all. Typically prescribed for depression, one of Zoloft’s seldom-mentioned benefits is that it spurs the growth of new brain cell connections in the hippocampus, a rich site for processing memories, including the memory of words learned. A colossal number of brain cells (hundreds to thousands) are born each day, but most die within weeks, unless the brain is forced to learn something new. Then more neurons revive and sprout connections to their brethren. The harder the task, the more survivors.

  According to studies done by Tracey Shors, a neuroscientist at Rutgers University, “learning rescues these new cells from death.” During a long-term depression, cell birth slows dramatically, and the hippocampus may even shrink in size. Keepsake memories vanish. Antidepressants in the class of SSRIs, such as Prozac or Zoloft, trigger the birth of new brain cells, which wire and fire with others, boosting memory while ringing the changes in mood. But, unfortunately, this wellspring usually takes four to six weeks to materialize. Now more than ever, Paul needed the ability to remember likely words, bring them into focus, and spotlight just one.

  It didn’t seem surprising that Ritalin, an amphetamine-like drug, was being bootlegged and sold on the streets, or that it had become hugely popular with high school and college students. Would Paul or I have taken it when we were in school? Maybe so. Or maybe the craze for it is endemic to our high-speed culture, where the merely fast fall behind, mail by post is for amateurs, and “one thing at a time” is so last century. Ritalin improves a brain’s ability to focus in a sea of warring sensations, which is why it stars in the treatment of attention deficit disorder—and also in cramming for exams.

  Learning something new always costs the brain a colossal amount of energy. The mind devotes countless neurons to the project, and over time recruits a web of more and more, until the effort is reinforced and the brain develops a skill. But this means paying close attention, tuning out the rowdy world while you focus on the relevant details. In Paul’s brain, it was as if some filter had gone awry and too much sensory noise kept seeping in. Shutting out the background static, focusing on anything for long minutes, exhausted him. I’d read a paper by Jean-Marie Annoni, in Neurological Sciences, about the syndrome of “post-stroke fatigue,” striking half of all stroke victims, which can last for a year or more. It’s not normal tiredness, but a confused doldrums, which demands lots of sleep but isn’t remedied by rest. Thoughts become hard to organize, and memory develops plugs and blockades. Yet it’s not truly a memory disorder, but a rift in the brain’s system for paying attention. As chaos reigns, the brain can’t decipher figure from ground. Any forest becomes a smear of trees, and the exhausted brain can’t focus on just one. Ritalin sharpens that focus by boosting neurotransmitters in underactive parts of the brain.

  Paul spent most of each day sleeping or in therapy, but usually got a second wind after dinner, when there was little to occupy his spare hours.

  In the pre-stroke years, we’d often passed the time by playing a jazzy game like the one we called Dingbats, which wasn’t so much a contest as a sort of mental solitaire for two with a common object used in uncommon ways. For the last one, as I recalled, we had chosen pencils. What can you do with a pencil—other than write?

  I’d begun. “Play the drums. Conduct an orchestra. Cast spells. Ball yarn. Use as a compass hand. Play pick-up sticks. Rest one eyebrow on it. Fasten a shawl. Secure hair atop the head. Use as the mast for a Lilliputian’s sailboat. Play darts. Make a sundial. Spin vertically on flint to spark a fire. Combine with a thong to create a slingshot. Ignite and use as a taper. Test the depth of oil. Clean a pipe. Stir paint. Work a Ouija board. Gouge an aqueduct in the sand. Roll out dough for a pie crust. Herd balls of loose mercury. Use as the fulcrum for a spinning top. Squeegee a window. Provide a perch for your parrot . . . Passing the pencil-baton to you . . .”

  “Use as a spar in a model airplane,” Paul had continued. “Measure distances. Puncture a balloon. Use as a flagpole. Roll a necktie around. Tamp the gunpowder into a pint-size musket. Test bonbons for contents.”

  “Good one!”

  “No heckling! . . . Use as a spear against hecklers. Crumble, and use the lead as a poison. Wind a kite string around. Dangle to test the direction of the wind. Pull juicy ants from a log with if you’re a wild chimpanzee. Create a fan-shaped design on wet painted walls. Write your name in fresh cement . . . Let’s see . . . A musketeer mouse could fence with it, or a knight could joust with it. Test for quicksand. Hold a tarantula at bay. Put up your nose. Douse for water.”

  And so we’d volleyed back and forth, until after a while our mental springs tired and unwound, or we just grew bored.

  To pass the time now, Paul watched television, though I wasn’t sure he knew what was really happening onscreen, and he had trouble working the simplified remote. The nurse’s call button still confused him. Over and over I showed him how to use the two devices, but the coaching just wouldn’t stick to his brain. Although he didn’t want to be escorted to the toilet, which he clearly found demoralizing, I helped him nonetheless because he refused (or couldn’t figure out how) to summon the nurse and he walked unsteadily. Sponge baths he enjoyed, and once a kind nurs
e even vigorously massaged his legs, after which I scratched his bed-numb back, which made him sigh with pleasure. He often tried to engage me in conversation, which in the end just frustrated and infuriated him because I so rarely understood.

  “Ff-ff-fox going return?” he posed anxiously.

  Latching onto the word return, I said: “Yes, if I go away, I’ll return.”

  “Noo,” he waved an erasing hand. “Mem, mem, mem, drive skutch!”

  “Skutch . . . uh, Florida grass,” I thought out loud. “I’m sorry, I don’t understand.”

  He threw up his hands in irritation, and spat out: “Bog off!”

  I laughed before I could stifle it. In London’s Heathrow train station a dozen years earlier, as we’d hurried to a train that would carry us to Eckington and his waiting mother, Paul had collided with a Pakistani man making equal haste in the opposite direction. Both men had shifted to the left and right at the same time, back and forth, growing more irate.

  “Bog off!” Paul had snarled.

  “Stinkeroo!” the other man had shot back.

  Then, slipping past each other, they’d pushed forward and the farce had ended. Afterward, we’d often recalled that incident with a laugh, as an example, Paul insisted, of the bygone British Empire in all its dysfunctional glory.

  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

  AT 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 The 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 c
ouple 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.