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Learning to Love What Is

Five years ago my husband fell from a sleeping loft, suffering a traumatic brain injury, which left him severely cognitively disabled. When I took him home after three months in the hospital, he was unable to remember anything that happened from the day of the accident or find his way home from across the street. It was as if he had suddenly been catapulted into advanced Alzheimer's. Our marriage, which had been built on equality and autonomy, was transformed forever.

Learning to Love What Is, by Alix Kates Shulman

Photos Courtesy of Alix Kates Shulman

Scott sometimes exhibits frightening behaviors, typical of his condition—like screaming and cursing when he feels frustrated or threatened—which are often hard to deal with. Still, he is the same dear man I fell in love with in 1950, when we were in a summer class together at Case Western Reserve University, and whom I have lived with for the past quarter century. Behind his symptoms, his self is intact: he is my gentle, loving husband, who thanks me every day for "sticking by" him, and who still takes joy in sipping a cappuccino at our favorite cafe or dancing with me in our living room.

I don't hold with that widespread cliche that says that people with dementia change their personalities, becoming entirely different people. They may lose the capacity to control their emotions, and many other capacities, but it's not true that they are no longer themselves and can be dismissed. Even as he gradually gets worse, Scott remains himself.

If I sometimes feel frustrated, impatient or dissatisfied, well, who doesn't? But those who assume that our lives since the accident must be miserable are wrong. At least for now, between our weekend explorations of the city, our nightly dinners and Netflix movies, and free chamber music concerts on Tuesday afternoons at a nearby college, we share plenty of pleasures. That he forgets the concert or the meal the minute it's over hardly matters: even in undamaged brains sensual pleasures fade quickly.

People sometimes ask me why, astronomical costs aside, I don't put him in a nursing home or hire someone else to care for him round the clock, and get on with my life. They don't understand that he is a major part of my life and always will be. Trying to keep him safe and happy has given me a new vitalizing purpose, even though I frequently fall short of my ideal of care. In some ways, paradoxically, we have grown closer since his accident, now that he's so dependent on me.

I'm not suggesting that the rewards of love can excuse society's scandalous failure to support—financially and otherwise—the millions of family caregivers who work for nothing and even impoverish themselves caring for their loved ones. But love can make it easier to accept what life deals you. In the scales of fulfillment, I've discovered that devotion may sometimes outweigh independence.

I realize that the time may come when I am no longer able to care for Scott at home and will have to find an alternative. But I hope to postpone it as long as possible. Should that day arrive, I hope I'll be able to adapt to it gracefully. 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 him, embracing life fully meant accepting its inevitable limitations, no matter what fate had in store. Not enough merely to accept it; you must adapt to it, struggle with it, milk it, embrace it, love it.

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