Nonetheless, there are times when his mind seems so different that I barely recognize him. As when he finishes breakfast and wipes his plate with balled-up Kleenex, round and round, and then places it on the draining board, insisting it is now “clean.” I explain yet again that dishes need to be washed after a meal, but he just doesn’t believe it. To his eye they look clean, even when clotted with egg, and I regularly find dirty plates on the draining board, ready to be reused. And sometimes the illogic really worries me, like when he asked if he could catch the flu by talking on the phone with a sick friend, because “the breath goes in one end and comes out the other.”
And yet, and yet, the old spouse I know still inhabits his being. I often see him clearly through the storefront window of his face, his thoughts rapping to come out, and I hear him speaking in old familiar ways, crafting a new piropo with Whitmanesque flare, such as “O Parakeet of the Lissome Star.” Or he will juggle his aphasia with an ease that quite startles me.
“That’s a lovely anthology Anne-Laure sent you,” I said the other day.
Paul swirled the pool skimmer like a butterfly net as he strode slowly around the pool, capturing tufts of cottonwood to jettison onto the grass.
“I wish they’d change their approach to painting,” he complained, then quickly added, “by which I mean use bigger print.”
I couldn’t help laughing. “You’ve translated yourself for me? How funny is that!”
Fortunately, despite his left-hemisphere stroke (which too often results in severe depression, anger, or both), and a near-death pneumonia of ten months ago, he seems altogether happier than before, living more in the moment, grateful to be alive. Our life is different, but sweet, often devolving into hilarious charades as he tries to pin a word down, like a lepidopterist with a handful of oysters. Such funny word combinations can spill from an aphasic’s mouth! So our days together still include many frustrations, but once again revolve around much laughter and revelry with words.
“The thing you put in the kitchen is void,” he told me yesterday, and it was only when we went there and looked out the window that I understood he was trying to say: “The bird-feeder in the kitchen courtyard is empty.” The finches were looking for their breakfast.
One recent afternoon, I mumbled with a yawn: “Why am I feeling so sleepy today?”
He replied with utmost sincerity: “Perhaps your mental encyclopedia has been requisitioned by a higher force.”
Those were the words his brain had found to say: Maybe you’re worn out from having to concentrate so hard on looking after me. I pictured the encyclopedia in my head and a big hand reaching in to grab a bunch of volumes.
After five years, I can finally share such word lore with Paul again. But aphasia still plagues him with its merry dances, and with its occasionally missed adverbs and verbs, its automatically repeated words or phrases. He can’t use a computer, can no longer type, and has trouble reading his own handwriting. So he will always need an assistant.
On the other hand, when a French magazine recently emailed him a dozen interview questions about a newly translated novel of his, he answered them without a fuss. The novel is The Place in Flowers Where Pollen Rests, the title of which he had tried so hard to tell speech therapist Kelly, way back when he was nearly wordless.
Although his style has become less baroque, his creativity and flavor of imagining seem to have returned, as he’s written three novels, proofed galleys, and published essays and fiction that he wrote after the stroke. Paul writes in longhand, Liz reads the pages through and types them up, marking the aphasic lapses. He takes the pages away and makes the corrections he wants. She retypes the pages. He rereads them. Reading is still very hard for him, because words on the right-hand margin often disappear, and a line can seem to jump up over the line above it. Nonetheless, he has trained his eyes to adapt. He has written and revised his pages, faithfully, for two hours, nearly every day for over four years. Recently, to his delight, he even wrote a book review—over the years, he’d written hundreds, mainly for The Washington Post, but this was his first since the stroke.
In the past, before manuscripts were submitted by computer, he rejected editing with a snip. Whenever he received edited pages, he’d get out a large pair of scissors and methodically cut off the margins, paste up the shorn pages, number them differently, Xerox the lot, and stubbornly return the clean copy to his editor. Now he welcomes Liz’s proofreading and values my feedback. As of old, I rarely see a book of his until it’s finished. Then I read it through, perhaps making suggestions in the usual way of a “first reader.” However, I resist becoming his secretary, assistant, or scribe. It’s important for me to remain a spouse, even if also a caregiver.
I can hear Paul shuffling papers at his desk right now, revising a sci-fi novel, Now, Voyager, whose main character 1/8 Humbly has a son named 1/16 Humbly. Apparently one of the characters is the Zoom Queen, a woman who can become unfathomably large or infinitely small depending on her mood. Hmm. Wonder who that could be? In Now, Voyager, the narrator shifts from first to third person, “I” to “he,” and when I asked Paul if this was intentional, he said that he hadn’t noticed. So perhaps the several voices in his head continue to take turns, or he simply forgets which perspective he’s speaking from.
Liz kept a list of some unusually esoteric—but all legitimate—words in this latest manuscript:
termagant, revenant, pseudo-aphorism, aminadversions, foison, unhouseled, welkin, cicisbeo, bailiwick, propaedeutics, dystopia, carboniferous chondrites, captious, circumambient, tapeta, vedette, inanition, traduced, logomachy, capstan, fulvic acid, proprioceptors, misanthropy, palaver, chimerae, plosive, dispositive, pukka, pabulum, hadron, plutocrats, sylph-like, longueurs, latifundia, estaminet, synoptic, atrabiliousness
Not bad for a man who five years ago could only say the syllable “Mem!”
During his window of heightened fluency in the middle of the day, he can write, stringing together chains of regained words, or make phone calls, or lunch with friends. Not all three; he has to choose. But, to some degree, isn’t that the same for all of us? I can write first thing in the morning, or I can answer a bunch of emails, or I can telephone a friend—I, too, have to choose where to spend my limited packet of mental energy.
Most often he enjoys writing letters, longhand, allowing the aphasic traces and cross-outs to remain, not being bothered by them, knowing that the recipients will understand and be happy he took the time to write, appreciative that he was holding them in his thoughts.
This morning, while working in my study, I heard the low whisking rumble of the bedroom door opening, followed by the steps of naked feet, then a tiny clicking which I knew to be the sound of Paul returning his ear stopples to their plastic case. I called to him with a mrok, to tell him where I was—in my bay window—and he mroked back, then appeared at my study door, naked as a wombat.
“Where’s my cantilever of light?” he asked sleepily.
I smiled. This was a new one. “Do you mean . . . your velour jogging suit?”
“Yes.”
“It’s in the laundry room.”
Why did his brain produce cantilever of light when searching for velour jogging suit? How or why or when might it seem to him a cantilever of light? Cantilevers are rigid, his jogging suit soft. Cantilevers support bridges. Unless he was thinking of his clothes as a bridge to the bright, wide-awake world? That seemed a reach. But the phrase captivated me, and I had to laugh when I realized that we’d been together so long I had instinctively known that cantilever of light meant velour jogging suit. Thank heavens for circumlocution . . . That dog can hunt.
Amid all the nonsensical verbal puzzles, living with Paul at times feels like living with a koan, one of those paradoxical dialogues, inaccessible to reason, that are taught by Buddhist sages as psychic knots for meditation. Even to begin to interpret a koan
one has to shed the cords of logic, bend language, dismiss conceptual ways of thinking, and give oneself over to intuition. Talking with someone who is aphasic, one lives in a similar state of perpetually realizing, of enjoying the aha! moment of insight that comes with solving a verbal puzzle. Like creativity, it invites muscling into the world while simultaneously letting go. His stroke has changed him, but not all for the bad, and it has also changed me.
A caregiver is changed by the culture of illness, just as one is changed by the dynamic era in which one lives. For one thing, I don’t have as much time in conversation with myself, and I feel the loss. Certainly I worry more about his death, and mine too, since I’m so much a part of the evolving saga of his health, which I have to monitor each day. But I’ve grown stronger in every aspect of my life. In small ways: speaking more directly with people. In large ways: discovering I can handle adversity and potential loss and yet keep going. I’ve a better idea of my strength. I feel like I’ve been tested, like a willow whipped around violently in a hurricane, but still standing, its roots strong enough to hold.
Coming to terms with being responsible for someone else’s life, having to live with such decisions, took a long while, and I didn’t like the struggle. At times it even felt like I might be breaking down. Overwhelmed, I feared I was either going to have to give up my career and just take care of Paul, or feel like a total monster and have my career but not take care of Paul. My challenge was to see beyond either/or, and find a way to be a loving caregiver of Paul while also nourishing myself.
As the immediacy and complexity of life changed, I struggled with it. At first I managed only by compartmentalizing—my own life, his life, work life, play life, house life—and then, finally, I learned to embrace it as a whole. Now, for the most part, it’s become seamless, I’m just living my life.
As I’ve written this book, at the speed of one to three pages a day, I’ve read the pages to Paul, usually after dinner, and we’ve talked and reconstructed memories about what happened to him in the hospital and during his first years at home (little of which he remembers, because his brain wasn’t storing memories well at the time). It has helped him understand himself better, what he went through, all he’s accomplished since the stroke. Whenever I read passages about caregiving, about my stresses and worries, his face grows tender, and he says, “Little Thing, how hard that must have been.” It has provided an opening for us to talk about my hurts and experiences, as well as his, and about our history and life together. A life like an intricately woven basket, frayed, worn, broken, unraveled, reworked, reknit from many of its original pieces. As a result, it has brought us much closer. Life can survive in the constant shadow of illness, and even rise to moments of rampant joy, but the shadow remains, and one has to make space for it.
I am in a phase of life with responsibilities I could not have imagined during my boy-crazy high school years in the heart of Pennsylvania, when Beatles tunes suggested that love was as simple as “I Want to Hold Your Hand.” Like the teen years, this is also a passing phase. Be fully awake for it, I tell myself, pay attention to all of its feelings and sensations, because this is simply another facet of being alive, of life on earth, and then there will be another era when Paul will be gone and you won’t have these responsibilities and worries. That has been the unthinkable thought. One that haunts each day, the worry of being left behind and alone that comes with having an older and/or sick spouse. It’s no use telling myself that I worried needlessly for twenty-five years—though, in retrospect, I did—because now that Paul is eighty, the fear rings truer. I know there will most likely be a long spell without him. I tell myself that I will be fine. On my walk today, I sensed: When Paul is gone, the trees and sky will still be beautiful, I will still be poignantly aware of life’s transience, and how lucky I am to be alive on this planet in space. It’s all part of the adventure. I will still cherish being alive, even though I will miss him fiercely. And, oddly enough, I will probably look back on these days as some of the happiest of my life, despite all the worries, frights, and impediments, because I’ve loved heartily and felt equally loved in return.
The pet names and piropos continue to flow and flower, some funny, some romantic, some playfully outlandish—all a testament to how a brain can repair itself, and how a duet between two lovers can endure hardship. This is what we have made of a diminished thing. A bell with a crack in it may not ring as clearly, but it can ring as sweetly.
POSTSCRIPT
SOME LESSONS LEARNED
IN THE FIFTH YEAR, I READ OF CLINICAL SUDIES WITH aphasics, using a number of the therapies that, sheerly by instinct, we had already adopted, trying all of them at once.
Immersion Training. Absolutely swamping Paul with language all day long and insisting that he talk, in pidgin if need be, just as if he were a settler in a foreign country who has to learn the local dialect as fast as possible to survive. He didn’t want to do it at first, because it’s so fatiguing, frustrating, and littered with embarrassments and missteps. Giving up, giving in to silence would have been easier, tending him without making verbal demands, as he crawled deeper into his shell.
Instead I engaged him in conversation nonstop, and spoke slowly, using clear, short sentences, and repeating important words and ideas. Gradually I ratcheted up the difficulty in tiny increments as he improved. Although I set up daily routines, I also encouraged yards of rest time. I allowed him plenty of time to speak and often asked for his opinion, helping him find words only when he got stuck. I praised his progress, no matter how small. Two weeks of speech therapy in a Rehab Unit, while essential, is nowhere near enough. The University of Michigan offers a top-flight intensive six-week residential aphasia program, which includes fifteen hours of individual therapy, five hours of group therapy, and three hours of computer-assisted training each week. Paul stayed home, but for the past five years has received the equivalent of about twenty hours of individual therapy per week, and ten hours of group therapy (talking with two or three people at a time).
A Corollary to the Above: Communication Partners. Speech therapists helped at first, but after a while it became clear that Paul would be living with aphasia for the rest of his life, and that it wasn’t something any amount of medicine or instruction could “fix.” The worst suffering came from lesions in everyday life. Beyond vocabulary and grammar skills, he had lost his social wellbeing, his connectedness to others, and that left him feeling marginalized and alone. The challenge was to restore a sense of normalcy, an intimate relationship with me, some responsibility and agency, and a willingness to socialize with others once again. Paul needed to be cajoled, tempted, led out, absorbed in chatting about everyday things, and surrounded by people who talked slowly to him but normally to one another. The latter was important because he naturally eavesdropped, wanting to know what people were saying, and he tried hard to follow. I found that one-on-one conversations with friends were easiest for him, and tried to minimize noise. It worked best to have people on hand who felt comfortable with his new speaking patterns, like his longtime friends Chris, Lamar, Jeanne, and Steve, whom Paul connected with and was inspired to pay attention to.
I’d watched as some words returned to him as cherished gifts, one by one after the stroke, especially the words Paul had learned as a professional. It’s possible that other aphasics could understand and use equally esoteric vocabulary related to their own work or special interests, words a speech therapist or even a spouse might not recognize.
Adventures in Circumlocution. “Can you talk around it?” I’d ask whenever Paul couldn’t think of a word he was trying to say. Liz would ask, “Is it a food? Postage? Have to do with writing?” etc. Getting his brain started on the right pathway seemed to help him focus on smaller subsets of words. He could usually describe it or find a rough synonym, which sometimes produced a parlor game of guessing. I praised his circumlocution, however far-fetched. The alternative was for him to take the
easier route and fall silent or pantomime, or just make sounds, instead of trying to say what he meant. What he meant was interesting, and it certainly mattered to him, but my intent was to keep him talking and engaged.
Appreciation and Humor. Given my arty trade, I may be able to follow looser verbal connections between things more easily, but anyone can swing open their mental doors and consider the surprising poetry of what an aphasic might be saying. Such as Paul’s using “This is the time of springtime reversal” when he clearly meant “Indian summer.” Or “a cache of creepy crawlies,” when he meant the annual brigade of ghost ants invading the kitchen. Laughter provides an indispensible spice during tragic times, and it’s been essential to our well-being, inspiring Paul to collar words and speak, since he knows that we won’t laugh at him, but with him about the normal high-jinks of aphasia. So he has nothing to lose—what he says might be amusing, even if it’s wrong.
Constraint-Induced Therapy. To my surprise, Paul began his own Constraint-Induced therapy as soon as he returned home from the Rehab Unit, stubbornly refusing to feed himself with his good left hand, but insisting on somehow clutching a spoon in his partially paralyzed right hand. It took a while for me to recognize that he was doing this on purpose, not automatically, and that I shouldn’t try to assist or correct him. In CI therapy, a patient wears his good arm in a sling, good hand in an oven mitt so that he can’t use it, thus forcing him to use the weak hand, and also forcing his brain to rewire for it. In Paul’s case, this meant that eating was slow-motion, spilly, and almost impossible at first, as the spoon sometimes swiveled upside down in his grip and food often splattered all around. But it was important to let him struggle and flail with his bad hand until he learned to subdue it. Now, despite the permanent droop of his outer two fingers, he holds cutlery or pen firmly in his right hand.