One Hundred Names for Love: A Memoir (9 page)

“It was a hovel of mayhem,”
he told me later,
“everything leapt out at me, with sharp angles and weird shapes that dropped out of my hands. And the mirrored pots seemed to be hallucinating my face right back at me—a face that felt like the one I saw on the round metal: twisted, ghoulish, with strange white bristles jutting out here and there. No, my own face felt much more metallic by far. And the folderol of the blocks and balls—a dunce’s playthings, which I couldn’t stack and could barely roll.”

Negotiating the twin beds was more important. Whatever else one learned, one had to be able to get in and out of bed—a skill stored so far back in childhood memory that it seemed hereditary. And yet, strangely, it could be forgotten. The Occupational Therapy room was all about coordination, and getting yourself out of bed safely was no exception. The knack of crawling on and off a bed means balancing and rotating various parts of the body, and every body has a different center of balance. For many of the stroke patients, an arm or a leg was dangling deadweight, and their equilibrium had changed. It was painful to see patients, stymied by the process, inching and dragging and sometimes losing their balance. Watching Paul relearn how to use his limbs reminded me a little of the summer I taught him how to float, tread water, then finally swim. Everyone can do it, but everyone does it just a little differently, depending on the weight, angle, and flexibility of their limbs. How strange it was to watch Paul cheered on by young physical therapists when he successfully got out of bed.
We come to this
, I thought mournfully,
all of us in time
.

For his next feat, Paul sat down in a chair, which he performed as if nearly falling from a great height. A safe solid chair waited behind and below him, but he had to trust its being there, reaching one hand back as he descended. Rising meant shifting his weight and launching himself up and away in a sudden lurch.

Watching the other patients, I beheld family members learning how to use mobility aids. A flock of canes and walkers waited to be auditioned, and Paul tried a couple and even left with a cane, which he never used. Always too vain to wear reading glasses, he couldn’t wrap his self-image around a cane, although he would have walked more safely with one for support. Maybe it was somehow connected to the memory of seeing his father, blinded in one eye in WWI, a rare member of his platoon who had survived the trenches, but not unscathed. Since those days, modern medicine has devised clever machines for diagnosing stroke, and better therapies for treating it, but nothing to revive the palisade of dead brain cells, alas.

CHAPTER 7

F
EELING LOST IN EVERY SENSE, IN ALL MY SENSES
, i continued to pour my efforts into supporting and encouraging Paul. Even if he couldn’t grasp what I was saying, he could watch my face express love, sympathy, and comfort, hear my tone of voice and inflections—all the more important now—and sense how I felt. Hugs delivered voiceless words. We could still communicate through the ancient system of
mirror neurons
, the marvelous brain cells that allow us to watch—or even hear or read about!—what someone else is doing, and feel as if we’re doing it ourselves. Located in the front of the brain, they helped our ancestors imitate language, skills, tool use, and society’s subtle pantomimes. An author’s ally, they’re why art stirs us, why we’re able to outwit rivals or feel compassion, why we can watch the Winter Olympics and half undergo the strain and thrill of the athletes, why, if I write “I ran through heavy rain,” you can picture the scene in your mind’s eye and feel your legs in motion, the slippery street underfoot, rain pelting your head and shoulders. All that is possible through words, but much is still knowable without them, through facial expressions, body language, gestures, and affection. What an eerie thought after a lifetime of words.

“Bwite,” Paul suddenly rasped. “Nit sot wupid.”

Awkwardly rolling and pursing his lips, curving and kiting his tongue, he continued trying to pronounce words, succeeding only half the time, and finally giving up in fatigue.

Not so different from a child
, I thought,
trying to coordinate lips and mouth to speak, saying “twees” instead of “trees,” “betht” instead of “best.” Except that language seems to slide down a child’s throat.

A newborn’s brain contains billions of neurons, many still incomplete. They bush out furiously until about the age of six, when the violent topiary work begins, and twigs are severely pruned, some strengthened, others discarded, until the brain fits both its skull and its world. Another big burst of landscaping takes place about ten years later. How does the brain decide which wiring to preserve and which to dissolve? By keeping what’s useful and killing the rest, it seals its wand-like connections into place. Magic ensues. How does it guess what may be useful? Whatever it uses the most. Hence the antiquity of lessons learned by rote, the skullduggery of abuse, the longevity of bad habits. Think or act in a certain way often enough, and the brain gets really good at it. Children tend to recover much better from brain injury than adults, whose brains are already intricately thatched and patterned. And children’s brains are wired quite differently from adults’, with mainly shorter connections among neighboring neurons. Elaborate long-distance pathways, linking remote areas of the brain, may give adults the edge when it comes to digesting thorny information, seeing the big picture, making difficult decisions—that baggy ghost we sometimes call
wisdom
—but an adult’s complex wiring is also vulnerable in many more places and easily sabotaged. Even when very young children have had the entire left hemisphere removed (to calm uncontrollable seizures), their right can run the language shop surprisingly well.

But adults?
Like cross-country skiing through crusty snow
, I thought. The first skier, plowing the path, needs muscle, but the following skier doesn’t have to work quite as hard, and the next in line finds the going smoother still. Each trip packs the snow firmer, deeper, reinforcing the furrow, until it’s easy to sail along with little effort.

Learning
, we call it. Skiing through deep snow. The brain hurts from the effort, but the more it traces and retraces its path, the swifter the travel.

I wrapped an arm around Paul’s shoulders and gave him a heartening smile. And Paul understood, despite his severe left-hemisphere injury.

The left hemisphere of the brain is like a child or a private detective; it’s constantly demanding
Why? Why? Why?
Obsessed with solving riddles, it won’t hesitate at making things up (a hunch, a prophecy, a superstition), because if a predator is stalking you, a wrong answer is better than no answer, and a fast half-baked guess is safer than a slow perfect answer. Neuroscientist Michael S. Gazzaniga has labeled the left brain the
interpreter
, “a device that seeks explanations for events and emotional experiences.” Whatever befell our ancestors, good or bad, they needed to understand why so that they could predict future events and prepare for them. Mystery causes a mental itch, which the brain tries to soothe with the balm of reasonable talk. The inquisitive, meddlesome left brain, that is; the right brain prefers to stay mum.

According to Gazzaniga, it’s the left hemisphere’s insisting on storytelling, fiction-mongering if need be, that allows us the illusion of being rational and acting with free will. The left hemisphere’s interpreter allows “self-reflection and all that goes with it . . . a running narrative of our actions, emotions, thoughts, and dreams. . . . To our bag of individual instincts, it brings theories about our life.” The left brain engenders a sense of self because “these narratives of our past behavior seep into our awareness; they give us an autobiography.”

Paul’s left brain, his interpreter, was wounded. No wonder he labored to make sense of what was happening. He frequently lifted his open palms skyward in a
What’s going on?
gesture, his brain still able to mime what he couldn’t phrase. All I could do was deliberately unpleat the worry from my face, and explain slowly in a calm voice: “You’ve had a stroke. It has damaged the part of your brain that controls talking. You’re doing okay. We’ll get through this. Just rest.”

How strange: Paul couldn’t talk, but he hadn’t lost his social sense, and he still understood the dance of etiquette. He would listen intently to the doctors, though I knew he was understanding very little and retaining less. He would greet a nurse with polite sounds, gesturing for her to enter the room or be seated, and when she offered him a small plastic cup, he took his medications gamely, with a sense of duty, as if he was once more the small son of a soldier father.

Crushed at the nurses’ station, his pills became a rainbow palette of potent dust. Little more than a few grains, they packed the force of Fauvist thunderbolts. Specks of lightning in a bottle, with just as much potential for harm.
Allopurinol
, for control of kidney stones and uric acid levels, tinted the applesauce a brilliant orange; while
Coumadin
, for slowing down blood clotting, turned vanilla pudding bright blue; and
Propranolol
, for blood pressure, dyed butterscotch pudding a garish green. But other pills joined the mix and the pharmaceutical jumble smelled acrid and bitter. Paul’s swollen right hand, weakened by the stroke, moved slowly, and he couldn’t coordinate it well enough to take the pills himself. Instead he obediently opened his mouth to be fed like a bird.

What a different scene from the one I’d grown used to. For twenty years, he had stood at the kitchen counter each morning shaking a white plastic jar of mixed pills until the ones he wanted agitated to the top, where he could grab them. The snapping-clatter had reminded me of baseball trading cards flapping against the spokes of a bicycle wheel—a cheerful sound from my childhood. He had studied up on his medications, whose complex schedule he knew by heart. Keeping track of changing doses, he’d split tiny pills with a sharp knife and a steady hand. Cursing and growling at the labyrinth of the automated dial system, he’d phoned in refills, consulted pharmacists and cardiologists with aplomb. While I’d stayed on the sidelines, dispensing love and trying to render useful opinions, he’d steered his own medical life—not just ably but with fascination about the science. He loved knowing that he was taking blood pressure medicine derived from
bothrops
, a venomous pit viper of Central America, and that if the snake bites you it can cause a stroke, but its venom used judiciously can help prevent a stroke.

A nurse tipped in one small spoonful after another, and Paul twisted his face as each hit his taste buds and lingered in his mouth for a few seconds until he could swallow. Nonetheless, he took his pills stoically, just as he did his insulin shots, which he received in a pinch of skin on his upper back, so he wouldn’t have to watch the needle enter. He’d never needed insulin before, and just in case I’d ever have to administer it at home, a nurse gave me lessons. The first time I jabbed Paul I handled the needle like a dart and he cried out in pain. His eyes snarled:
Don’t THROW it!
Paul wasn’t coordinated enough to inject himself, and I dreaded the thought of stabbing him every day. Not because I didn’t think I’d get used to the syringes, or even the ritual of filling them, tapping away oxygen bubbles, and piercing the skin. If I misfilled a syringe and injected him with too much insulin, I could kill him. The responsibility scared me. One small slip by me could have huge consequences.

Or one big slip by him. Paul was one of the patients on the floor labeled as
FALL RISK
. Woefully confused, balance off-kilter, he lurched when he moved, and his vision was skewed—all of which added danger. fall risk earned him a notice on his door, a note in his chart, and the alarm on a string, with one end clipped to his hospital gown in a hard-to-reach spot. He was supposed to ring for an aide when he got up. But he didn’t remember that instruction, and probably hadn’t understood it to begin with. Moments stretched like aluminum taffy when he needed to use the toilet or wondered why he was imprisoned far from home. If he didn’t wait for help, and plunged ahead on his own, an alarm would ring as he jerked the cord free.
Patient on the loose!
the bell pinged in the nurses’ station. Then a nurse or aide would come running to see if he’d hurt himself or needed help with the toilet. But if no one was at the station, and I wasn’t in his room, the bell might not be answered right away.

Fixated on the idea of home, Paul began trying to escape. With his hospital gown flapping open in the back, face tufted and bloody from clumsy attempts to shave, hair a short cyclone, he waited until the coast seemed clear, then took wing down the hallway, shambling and weaving at speed, subversively heading for the exit, without knowing exactly where that might be. Once, like a deluded Magellan, he circumnavigated the floor, almost making it to the elevators before a nurse and an aide captured him and led him trumpeting angrily back to bed. Several days later, despite his lack of coordination, he managed to wiggle out of his hospital gown
without setting off the alarm
, put his loafers on the wrong feet, and abscond naked down the hallway, sliding along the wall as if he were installing wallpaper.

Noncompliant
was the term the nurses grumbled about Paul, the rebellious patient in Room 252, the running man. Their irritation was easy to understand. Often overworked, with a slew of demanding patients, they didn’t need an errant patient who at unpredictable intervals might risk something really dangerous. Their nightmare was a rehab patient falling, breaking a hip or a wrist, hitting his head, or injuring himself in some other way while under their care. Small wonder Paul’s escapes made them crabby, especially a senior nurse I’ll call Martha, a brusque, stocky woman whose tone of voice drummed her rank. I had the feeling I greatly annoyed her, too, by hanging around so much and seeking a nurse’s help for Paul whenever he needed it.

Trying to stay eagle-eyed, I was haunted by the memory of a close friend who had almost died in a hospital after the wrong dose of a drug was given. Fortunately, she was visited just in time by a well-wisher who happened to be a physician’s assistant and acted fast when she arrived and found our friend lapsing into a coma. Slip-ups occur in hospitals far too often, and it’s no wonder—shifts change, patients hate being there, difficult cases are
de rigueur,
and some doctors and nurses will be seasoned and compassionate, others less so. And Paul was
noncompliant
, which really irked Martha.

In contrast, Nurse Marty was mellow and rail-thin, a man with lanky brown hair and a genial smile, prone to discussions about old movies and philosophy of religion. Nurse Melissa, a heavyset woman in her early twenties, usually arrived grouchy, and spoke to Paul in a holler, as if his inability to comprehend speech meant that he was also hard of hearing. I’ve since learned how common this is for aphasics; a well-meaning friend or stranger compensating by speaking louder, as if hammering the words might somehow drive home their sense. Other nurses filtered in and out, and they soon merged into a uniform flow of uniforms. One minute the doorway to the room was empty, the next it framed a complete stranger bent on intimacies. A split second of surprise—from where had this one materialized? Then my left brain’s interpreter, asking
Why?
might find a quick clue before I even knew I was curious, and feed me the most likely answer.