One Hundred Names for Love: A Memoir (26 page)

CHAPTER 21

A
BIG SURPRISE FOR BOTH PAUL AND ME WAS HOW MUCH
we’d grown to like Liz—who sometimes seemed like our instant grown-up daughter and at others like a sibling or college housemate. Liz was fun: bookish, chatty, opinionated, and quirky enough that she fit right in. She threw herself into things—be it geology or dragon boating—with an obsessive gusto that made perfect sense to us, since we were forever fiendishly possessed by things, too. She became our familiar, in many senses of the word, but especially: (1) an intimate friend, and (2) an animal who embodies a supernatural spirit and aids a witch in performing magic.

Stroke patients, particularly those with aphasia, often lose some old friends. It’s hard enough for a spouse to learn to communicate with them at a vastly slower pace, using fewer words in response, without monologuing or feeling too awkward to know what to say. A few friends, even long-standing ones, were not able to cope with the aphasia and deserted Paul. I listened to his sorrow, his anger, his sadness over them. But I knew this was usual, and that he needed to make some new friends with people who knew and liked him as the person he was
after
the stroke. Some did, including Liz.

In the pool, clad in a cheerful striped bikini, Liz often shared medical stories with Paul, and I occasionally overheard snippets of them drifting on the breeze through my study windows.

“A severe reaction to an antibiotic . . . body covered
all
over with oozing blisters, and on his palms and the soles of his feet . . .”

Or, on another occasion, “I got to pull out a vacuum-surgical drain today, it’s called a grenade! It
really does
look like a little grenade. You squeeze it to create the vacuum, hook it up, and it sucks out all the blood and nasty fluid from the surgical area. You just pull out the tubing when it’s full. . . .”

Liz practiced her new medical terminology on Paul, bludgeoning him with word games, partly to amuse herself during the languid hours she spent with him in the pool.

“I have a word for you,” she’d say teasingly or as though she was bearing a gift. “Do you know
anhedonia
?”

With a few hints he’d sometimes miraculously remember, pulling it out of his word hoard.

“Guess what I’m learning?!” I heard her chime merrily one day as I was passing the living room’s back door. “Extrapyramidal neuroleptic side effects!”

“Have you ever heard of
akathisia
? Okay. Fine. Do you know
... dystonia, dysphoria, akinesia
?” “How about easy ones . . .
trichtillomania
?
pneumothorax
? Maybe a little geology? Anhydrite?
Ooid
?
Syncline
?
Cataclastic
?
Breccia
?”

“Wanna hear about the four major types of prostate surgery?” She prattled on without waiting for an answer: “Well, the least invasive, most comfortable option goes up through the penis like a Foley catheter, but it’s
actually
a miniature roto-rooter. . . .”

Paul looked forward to their swimming-buddy chatterbox time. They shared a bit of a vile irreverent sense of humor. The more gruesome the story was, the better. And Liz seemed to enjoy making him grimace.

“I like to think,” she told me out of his earshot, “that sometimes some of these poor miserable patients make him feel a little better about his situation . . . to use a word I learned from Paul, a little
schadenfreude
. I mean, here he is in the sun in his pool, swimming away the afternoon . . . and these poor folks are in the hospital, oozing with drains!”

From my desk window, which commands a view of the backyard, I could hear Liz luring him into talking more by asking about things in our house:

“In the library, there’s a photo of you and Diane standing next to another couple in front of a little airplane. It’s a neat photo. Where were you going?”

I paid attention this time, curious how he’d answer.

Paul looked stumped, and, undeterred, Liz pressed on with a clue designed to prod his memory.

“I think it said something about the Caribbean.”

I watched Paul absently drawing an arabesque on the water with one hand as he tried to haul up the right word.

She started reeling off Caribbean locations: “Dominica? Caymans? Virgin Islands? . . .”

Eventually she got to the Turks and Caicos, where we had flown with our friends Jeanne and Steve in 1982. The flight down, in Steve’s vintage twin-engined Apache, following the Bahamian chain, had been a pastel idyll. But on the return flight we’d been vectored into the center of a fuming thunderhead, where the air glittered an unholy green, and suddenly, in a thick whiteout, without our feeling anything like motion, the dials had spun around. Hurled by up- and downdrafts, the plane was doing a loop-de-loop in the clouds. Fortunately, Steve was an aerobatic pilot, who read the instruments fast and knew how to recover—flying the loop blind—even though a twin Apache carrying four people wasn’t the small single-engine Pitts biplane he normally barnstormed in performances. Equally luckily, the Apache had strong struts connecting the fuselage and wings—otherwise the wings would have ripped off. A fledgling single-engine pilot sitting in the copilot’s seat, I saw the instruments tumbling and guessed what was happening, but I wouldn’t have been able to save us. However, I had absolute faith Steve could. I’ll never forget the look of contained panic on his face as he noticed me holding my hand lightly on the yoke (the two yokes move in synchrony), following his lead.

“This isn’t the time to be learning!” he’d snapped. “Secure everything!”

I quickly stowed anything that might zing around the cabin. There was even a term for the jumble of plane and human paraphernalia that fell out when you shook a plane upside down:
gubbins
. It was a favorite word of Paul’s. Then, with a strangeness one rarely encounters or lives through, a suitcase began to levitate and sail forward through the air like balsawood. In the backseat, Paul and Jeanne looked green, scared, as they grabbed the case. And then right side up at last we leveled out and flew into plain old welcome hard rain.

The postcards Steve later had printed to commemorate the trip were a black-and-white photograph showing Jeanne, Steve, Paul and me posing plane-side before the southbound flight, with the title “Trucking Through the Turks: A Sky Art Event.”

How much of that sifted through Paul’s memory in the pool when he heard the words “Turks and Caicos?”

“Oh yes! With friends and
gubbins
,” was all he answered.

Listening to the exchange, I thought how frustrating it must have been for him not to be able to share the trip’s details with Liz. That podgy little word,
gubbins
, held his brain’s key to the whole drama.

Pressing on, Liz continued asking him about curios around the living room, such as where the pounded-brass cauldron came from (the trip to Istanbul with my mom when I was sixteen), why there was an inflatable cheetah standing in front of the fireplace (it came from the Warsaw Zoo), how we acquired the see-through globe of the solar system and constellations (it went with Paul’s large telescope, folded up and parked in a corner), where we’d bought the purple faux-velvet swooning couch (a shop in West Palm Beach), if the books in the bookcase were arranged in any special way (they were, it just wasn’t obvious), and where he’d found the tribe of Hopi kachina dolls that was dancing, spell-casting, and generally mischief-making behind the floral couch (Tucson).

Either he’d remember the errant word, or she’d finally guess, or he’d end the game by saying: “We’ll ask Diane.”

In the pool, he spoke more ably than on dry land. Maybe the weightlessness lulled him, or maybe it was the idleness of the conversation, the lack of pressure. He’d flap his arms around slowly, and he’d sweep the skimmer in endless arcs, while Liz hung on to the side of the pool and kicked her legs, or trod in the deep end, gabbing away or waiting for him to answer. Their record was three skin-wrinkling hours in the water.

I often joined the floating fellowship. When we talked with Paul in the pool, we paid attention to his mood. Did he seem like he wanted to space out and just meditate? Did he seem open to questions? We’d ask a few. Babble on a bit. Give his brain some quiet time to rest. Babble some more. Ask another question or two. Give him lots of time to answer. Do little charades to help him with words. Coach as needed. (Something like: “Hmm. City . . . in New York. Do you mean . . . ? Upstate? Rochester? Albany? Buffalo? Saratoga?”) This created less pressure than a formal speech therapy session, where he’d have to focus and perform without the luxury of frequent long rest periods. More time to answer, less pressure, less frustration, a more relaxed mood, conversation that was tailored to his life and interests, and lots of varied clues—with all of that, he found himself most fluent when half submerged.

That he didn’t swim at all the first season after the stroke—however happy he might be lolling in the pool—really concerned me. Along with his inability to button a shirt, work household gadgets, or remember instructions, it suggested serious damage to his
procedural
memory, the unconscious memory for
how
something happened, or
how to
do things. Not
that
something happened, which involves a different brain system. Drawing on many areas of the brain (cerebellum, basal ganglia, various sensory and motor pathways, among other regions), subtle skills like bathing, dressing, walking, and swimming evade language, but help the body remember itself in the world. It’s why one rarely forgets how to ride a bicycle, despite the intricacies of balance it requires. One needs to think about how to float only while learning; after that the body remembers how to angle arms and torso just so, without consultation. For most people, such skills lie beyond words.

Paul remembered what swimming was, and where it took place, and even the sweet spell of gliding through the water. The missing piece of the equation was
how
to thrash his arms, kick his legs, and glide—all in unison. With practice, he had relearned how to use a spoon, a chair, a comb, the toilet, but some household tasks still eluded him. He regarded a can opener as a contraption from hell. Pens escaped his fingers. Shaving required lots of energy and focus, and he was completely baffled by cleaning his electric razor, which meant taking bits apart and then reassembling them in the right order. It made me wish he’d spent more time in occupational therapy at the hospital.

The two fingers on his right hand remained clenched from the stroke, and needed to be pried open and stretched each day. Before the stroke, Paul had had dry cracked hooves instead of heels, but a routine of regular foot massage restored the circulation and kept the hooves soft. Liz did the stretching and massaging on weekdays, I continued on weekends and whenever Liz was away. No amount of stretching would ever straighten his fingers again because their problem wasn’t entirely muscular. Yet stretching and massage did ease them for a short spell, long enough to grip a pen and practice writing, or hold a fork or spoon for dinner, and it felt soothing, and helped keep the contracture from getting worse.

The daily routine never varied: hand massage preceded swimming, and swimming always ended promptly at 4:50, so that Paul could get ready to watch
Judge Judy
, a new addiction and instant mainstay of his verbal rehabilitation. After an hour of courtroom drama and dialogue—money owed on used cars, unpaid loans, scam artists, angry “keying” of a rival’s or a cheating lover’s car, nasty disputes over minor objects between ex-spouses, evil girlfriends, unleashed pitbulls, inheritance disputes, freeloading boyfriends, and bad debts—he watched the dire BBC news, then the national news, and after that ate dinner and tried to talk with me until movie time.

We developed a habit of watching a TV or rental movie almost every night; Paul couldn’t always follow the plot, but I gave him updates at regular intervals and answered questions. He found old movies we’d already seen easiest to grasp, though anything with many characters or intersecting plotlines rattled and confused him. In his sundowning state, he could still manage language in this more passive way, with the help of Hollywood’s enticing images and musical scores, provided they didn’t make too many demands.