It’s been more than five years since my husband Paul’s stroke, which left him “globally aphasic” (unable to process language in any form). But thanks to hard work, love, and the brain’s gift for rewiring itself, he has re-loomed vibrant carpets of vocabulary and his speaking continues to improve. Last week, he started regularly making puns again, for the first time since his stroke.
“Those dollar bills look battered,” he said, watching me assemble change for a foray to the farmers’ market, then added with a smirk: “Battered and fried!”
Paul and I no longer worry about his “getting better,” no longer regard aphasia as a process of recovery with stages. We unwrap one day at a time, treating it as a star-spangled gift. He often wakes up too early, finds me and says: “Come and cuddle.” Then I’ll crawl back into bed, enjoying the special radiant warmth of the already-occupied nest, slipping deep between the womb-like folds of the comforter, and we’ll curl tight, linking our breaths. He’ll call me his little scaramouche (a rascal or scamp), and we’ll recall past times together, easy and hard spells, and some of the fun things we’ve done.
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.”
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 Paul—like a lepidopterist with a handful of oysters—tries to pin a word down. 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.
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 un- fathomably 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 three voices in his head (which appeared soon after the stroke) continue to take turns, or he simply forgets which perspective he’s speaking from.
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.
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.
There was a time when I could be decoyed out of bed by the simple beauty of a summer morning. Now I awoke tangled in worry. All I could do was wither and wait, breathing shallowly, as one often does when beleaguered. I needed to find some calm and continuity again, and so I made time each day for a few minutes of toning, a fourteenth-century word for singing or chanting in elongated vowels. Inhaling deeply, I exhaled ah until my breath faded, inhaled again and exhaled a louder steadier ou (as in soup), whose vibrations I could feel in my cheeks and ribs, then inhaled again for a more invigorating ee, and finally for a rotund oh. I sang out the sounds again, this time louder and more richly. Echoing around the bones, the vibrations steadied my breath, focused my mind like a mantra, and relaxed my body. It helped calm me a little, just as it always had, not only by deepening my breath, but by vibrating my cartilage, sinuses, and bones in a sort of tonal massage.
Needing to ground myself, I sought the early morning light. As I strolled through the neighborhood, admiring tar patches poured in random squiggles on the roads, I imagined they were poems in Japanese, Chinese, or Tibetan, which I translated. Working on a haiku as I walked helped me focus my mind on something other than illness, something natural and timeless, such as: “Orange stars on stilts: / Late summer in the garden / Before the leaves fly.” Returning home, I noticed a bush of yellow peonies blooming like brilliant handkerchiefs against a backdrop of multicolored tulips. Glossy, purple, spaniel-eared irises were swaying next to their wilder yellow cousins, the Siberian irises, which had traveled a long distance from their ancestors on the Siberian steppes. We’re all traveled, I thought. Parts of us, anyway. Some of my traveling parts would end with me since I had no offspring. For a moment that fact saddened me. There was a time when I’d thought of my books in that way, as extensions of myself that would outlive me. I no longer did. These moments all alone before the peonies and irises in the dappled light of a summer morning seemed enough. This little everywhere, this nowhere else.
In the beginning, 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 and I’m just living my life.
After dinner, we often share 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 confide my stresses and worries, his face grows tender, and he says, “Little Thing, how hard that must be.” 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 begone and you wont 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. 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.
Paul continues to invent new pet names for me, 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. A bell with a crack in it may not ring as clearly, but it can ring as sweetly.
Excerpted from One Hundred Names for Love: A Stroke, A Marriage, and the Language of Healing, by Diane Ackerman. © 2011 by Diane Ackerman. Used with permission from W.W. Norton & Company.