Tikkun Magazine, November/December 2008
Love in Adversity
By Alix Kates Shulman
In the summer of 1950, the year I graduated from high school, my future husband and I had a forbidden but memorable love affair—after which we went our separate ways, married others, raised families, built careers, endured tragedy, divorced—but we never forgot each other. By the time we reunited thirty-four years later, we were in our fifties and with such separate, well-defined lives that we were able to build our new marriage on trust coupled with freedom, equality, and self-sufficiency—goals inspired by the feminist movement that had shaped me. During the two decades we shared our lives we prided ourselves on our independence, spending months of each year apart, separately pursuing our vocations (he as a sculptor, I as a writer) until, on July 22,2004, in a beach house on a small Maine island, our lives were completely transformed. As my love fell from the sleeping loft to the floor—suffering (as I was soon to learn) many broken bones, internal bleeding, and multiple blood clots in his brain—his independence, and with it mine, vanished. He was seventy-five and I was seventy-two.
Seeing him lying naked and deathly still on the floor nine feet below our bed, I dashed down the stairs calling out his name. No answer. I shook his shoulder gently. Still no answer. Somehow I managed to find my cell phone and call 911.
After what felt like an eternity, but was actually perhaps twenty minutes, the door to our cabin burst open as, from every corner of the island, one by one the island's heroic Volunteer Fire and Rescue Team exploded into the room. I barely had time to put on my sneakers before I was scrambling to keep up with them as they started out the door with Scott on a stretcher, down the rickety stairs, toward the treacherous beach at high tide. The night was foggy and moonless, obscuring the path. My watch said 2 AM.
They carried the stretcher in relays across the long beach in the dark to where a dirt road began, then transferred him to the waiting fire truck, putting me in the cab—and off we raced across the island to the dock, where a rescue boat from Portland had arrived only moments before. As we pulled anchor and headed out to sea, I gazed back at that receding ordinary world where life proceeds by days and nights, not moment by terrifying moment, aware that our world would never again be the same.
Most traumatic brain injuries are pretty impervious to treatment. Human bones normally heal in six weeks, but for brains the course of healing is unpredictable and erratic. "It could be a year or more before we know the extent of the brain damage," warned Dr. Cushing, head of the Maine Medical Center trauma unit.
A year'. I reeled in shock but never wavered in my resolve. For nearly three months of hospitalization—six weeks in the ICU in Portland followed by an equal time in a rehab hospital in New York City, where we live—I sat beside Scott from 8 am to 8 pm, determined to protect him from the inevitable daily institutional mishaps (including another fall on his head!), soothing his terrors and waiting out his delusions, committed to restoring his health. Somehow I convinced myself that the doctor had predicted that he would recover fully within a year. As most brain healing occurs in the first few months after trauma before gradually tapering off, seeing his steady progress, I continued to believe in Scott's total recovery, even though, by the time an ambulette brought him home to our apartment, his short-term memory was still completely shot, resembling advanced Alzheimer's disease, and all his cognitive abilities were severely compromised. Although he couldn't figure out how to work the phone, bring up the names of our neighbors, or make sense of a menu, much less make art again, and he was ignorant of the century, year, season, month, and day, he recognized his family and friends, with whom he was able to exchange pleasantries as if our conversation actually made sense to him. Buoyed by each improvement, however miniscule, I embraced his recovery as my mission, my calling. My life had only one goal—to restore his life. Unwilling to trust anyone else with the responsibility of this crucial undertaking, I leaped into action, determined to keep him active and involved.
But by the first-year anniversary of his fall, I reluctantly had to admit that he was deeply and probably permanently disabled, despite his continuing gradual improvement. While physically he was much better, walking and talking almost normally again, his capacity to think or remember was devastatingly damaged. True, he was more observant with each passing week, and his attention span increased. Things that had been lost on him since his fall—like the taxi meter or a news item on NPR—occasionally began to register. And he grew steadily more affectionate. But he couldn't initiate an activity on his own or make a decision; indeed, all the crucial functions of the frontal cortex—instigating, organizing, and executing a plan, so essential to an artist; problem-solving, reasoning, and all the higher cognitive functions that are the glory of our species, as well as the "gatekeeper" functions of judgment and inhibition—were now, like all new memories since his fall, beyond his reach. He was shockingly disoriented in space and time—he couldn't find his way back from the trash chute down the hall, and every meal was lunch to him—which rendered him utterly dependent. And, perhaps most shocking, he had no memory of his accident and no understanding of the dramatic changes he'd undergone.
As it gradually came home to me that he might never recover, I sometimes felt myself slipping toward despair. Seeing me struggle to maintain my equilibrium, some concerned friends suggested that I should find some suitable home for him or hire a full-time caregiver and proceed with my life—as if his life were over and mine were something I could sever from his without consequence. But this man, with whom I went back half a century and with whom I'd lived my most fulfilling years, was too dear to me, too close for me to contemplate such a move. Whatever others might think, I knew that beneath his murky confusion, his self remained intact. His sunny optimism and charm, his aesthetic passion, his deep-rooted modesty, sincerity, generosity of spirit, and intensely loving nature kept breaking through the fog, despite the daily bouts of agitation and sporadic violent outbursts typical of traumatic brain injury.
Still, if we were ever to normalize our lives (albeit a new normal), something did have to change, now that our marriage, for so long based on freedom, was grounded in its opposite: dependency.
When that tough-minded philosopher Friedrich Nietzsche proposed his principle amor fati, meaning "love your fate" or "love what is," he wasn't suggesting that you love only the pleasant parts. To embrace life fully meant to him to accept life with all of its inevitable limitations, no matter what fate had in store. Adapt to it, struggle with it, milk it for all you can, love it. We had to adjust, adapt, bend to our new reality—no less than if our lives had been suddenly transformed by the birth of a child.
Beginning in the second post-fall year, after accepting at last the truth of Scott's permanent disability and coming to terms with my own sometimes debilitating anguish, I realized I must change. With my first year goal of his recovery essentially dead, I had to try to make our lives as fulfilling as I could, given our circumstances. For Scott, unable to do anything for himself, happiness meant only one thing: being with me, whether at home or out in the world. For me, it also meant carving out time away from him to do my work. To accomplish this I would have to wean him from his complete dependence on me.
I certainly could have used the financial and social support that any decent health care system would offer the disabled and their caregivers as a matter of course, in place of the current policy of relying on millions of women's unpaid labor. My feminist conscience also bridled at the very structure of the family, which dictates that women do most of the world's caregiving. But the injustice imbedded in our political and social structures did nothing to diminish my resolve to do my best for Scott—and for myself.
Once again, I jumped into action (my antidote to despair), as I had when he fell. I posted an ad on the New York University employment website and two weeks later settled on a graduate student in art to be his companion on weekdays from 9 AM to 2 PM, when she would accompany him to the bookstores, cafes, and galleries that had once been his favorite haunts. The minute he was gone I turned off the phone and returned to work.
I began at once to write about the radical turn our lives had taken. And from the very start, an astonishing thing happened. Knowing that every hour was precious and precarious, since at any moment there might be an emergency with Scott, and acutely aware that my working hours were severely restricted, I found that this writing was the most efficient of my life. As never before, I wrote in an ecstasy of inspiration until, after little more than a year, I had miraculously completed the first draft of my new book, To Love What Is, a memoir about him, his fall, and its aftermath—which turned out to be as much a love story as a story of trauma and survival.
By the beginning of the third year since Scott's fall, from the outside my own life looked much as it did before, though I worked a shorter day, and instead of cramming my chores into as brief a time as possible, I took Scott along and stretched them into an expedition—to the market, the doctor, the library. When I went out with friends in the evening, the difference was that I hired a Scott Watcher and tried to get home before his bedtime. Not that I didn't have my fill of frustration, anger, and resentment, but despite what others imagined, for the most part I was fairly content, as, I believe, was Scott. Between our nightly movies, free New School chamber concerts on Tuesday afternoons, weekend interludes of Asian music at the Rubin Museum, and Sunday jazz sessions in the park—all of which piped rapturous infusions of dopamine directly into our right brains and were within walking distance of our apartment—our cultural life was, if anything, richer than ever. That Scott would forget the movie or concert or visit the minute it was over hardly mattered, since he was incapable of living anywhere but in the immediate present. Lacking knowledge of the recent past or any sense of the future, for him "living in the moment" was not a choice but the only available option, making his pleasure my priority. Was his delight a function of his cognitive deficits ("what I don't know won't hurt me," he often said) or an overflow of love? I'll go with love, which he volubly expressed many times a day.
Though our lives may be circumscribed and often difficult, it turns out that sometimes in the scales of fulfillment, devotion may outweigh independence. As of this writing (summer 2008), we've been lucky enough to remain together.
Alix: Kates Shulman has written twelve books offiction, memoir, biography. Four years ago she became her husbands caregiver, a life recounted in her newly published memoir, To Love What Is: A Marriage Transformed.
Source Citation
Shulman, Kate. 2008. Love in Adversity. Tikkun 23(6): 41.
