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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’ve 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 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. 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.

Poet, essayist, and naturalist, Diane Ackerman is the author of two dozen highly acclaimed works of nonfiction and poetry, including A Natural History of the Senses—a book beloved by millions of readers all over the world.

From the July 2011 Shambhala Sun magazine. Click here to browse the entire issue online.






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