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Sunday, Jul 12, 2009
I gave up everything to take care of my spouse after he suffered a brain injury. But would I also lose myself?
Editor's note: Excerpted and adapted with permission from "To Love What Is: A Marriage Transformed" (Farrar, Straus and Giroux, 2008).
By Alix Kates Shulman
Read more: Life Features, Memoirs, Recovery, trauma, Marriage, Brains, Life, Alix Kates Shulman
Courtesy Alix Kates Shulman
Alix Kates Shulman and Scott York
Sept. 17, 2008 | On a moonless summer night my husband fell 10 feet from a sleeping loft to the floor and did not die. He did not die, though he was 75 years old, and the accident happened in a remote seaside cabin inaccessible by road on a coastal island with no doctor on call, much less a hospital. He did not die, though X-rays taken several hours later showed that he had broken most of his ribs and both feet, punctured both lungs, causing perilous internal bleeding, and suffered so many blood clots in his brain that each CAT scan of that precious organ resembled an elaborate filigree.
After four weeks in the ICU, Scott traded the breathing tube for a "trach collar," a device connected to the respirator, which was surgically inserted directly into his windpipe and contained a hole for a speaking valve. The first words he uttered, pointing to the sink: "Kleenex, please." Like a child's first word, a triumph. Thrilled and grinning, I handed him the small box of tissues. He wiped his nose. Immediately my grin faded, as out of his mouth poured a great torrent of words, some comprehensible, some not, a wild river of stories, mixing events I knew about with some I never heard of in our 20 years together. One by one the doctors and nurses drifted into Scott's room to witness the miracle and assess the damage. They questioned him closely to see what he knew of the past and present. He knew his name and the date and city of his birth, but he didn't know the current year, month or season. He knew that my birthday was in August, but he couldn't remember my name. He knew we were in Maine but thought the city we were in was San Francisco. He remembered that at age 18 he left Cleveland for Duke to study biology, chemistry and physics, but he claimed to have gone to graduate school at Penn rather than Harvard. Whatever question was asked, he was never at a loss for an answer, however far-fetched.
His ability to correctly interpret what he saw was also out of whack. In the following days he valiantly tried out one scenario after another in an attempt to make sense of his incomprehensible surroundings: Sometimes the hospital was a library and the nurses librarians; he sent me off to the "stacks" to get the "tomes." Seeing Tiger Woods on the overhead TV, he decided the hospital was a golf club. One afternoon, seeing a male nurse walk by wearing a yellow hospital gown, he said, "Look! Here come the gendarmes, wearing their uniforms with the gold braid." Never before had I heard him speak with such verbal flourishes. Did they disclose sides of him he never chose to reveal to me, or did they signify something entirely new -- perhaps mad?
All the nurses and residents assured me that Scott was merely suffering from "ICU psychosis," a temporary condition that often afflicts people who spend weeks in intensive care. Everyone promised it would disappear as soon as he left the hospital, a hope I clung to until a speech therapist, after extensively testing him, finally told me that in her opinion, Scott's short-term memory was completely shattered as a result of his multiple brain injuries. I asked her how long she thought this extreme memory failure would last. She studied my face, trying to assess my resilience before delivering her devastating verdict: "It could take years before we know the true extent of the damage."
Doctors told me that Scott would need a year to heal. I accepted it without a moment's hesitation. For one whole year my life would be aflame with purpose, single-minded and clear -- to reclaim his life. There was no one else to do it, and nothing else remotely worth doing. I sprang into action, powered by hope and adrenaline. The problem was I got it wrong. What the various doctors actually said was that healing could continue for up to a year, for more than a year, possibly for the rest of his life, since every brain is different, and when the healing had run its course it would slow down and stop.
The worse things went for Scott, the greater my resolve to make them better. When new tests were scheduled, I insisted on accompanying him. When he lacked the energy to eat, I fed him. I counted every sign of his improvement a victory and every disappointment or frustration a temporary impediment.
Not that I was ignorant about his condition. Each night before sleep I fought despair by searching the Internet to see what was in store for us. I pushed myself to absorb the obscure intelligence on which our future depended. On a dozen websites all the symptoms and consequences of brain trauma were laid out systematically, scientifically: The disabling loss of memory, the general confusion, the attention deficit, the incapacity to follow instructions, the complete inability to plan or organize or even just know to put your pants on before your shoes ("sequencing problems"); the impulsive outbursts ("disinhibition") that lead some sufferers to rage and curse at their caregivers or talk dirty to strangers; the bouts of agitation; the total blackout about the accident itself; and the evening delirium ("sundowning") that produces delusions, fixations, hallucinations and paranoia in the cognitively impaired, particularly the elderly, in unfamiliar surroundings.
Eleven weeks after the accident, the social worker announced that Scott's discharge date was set, with a strong recommendation of 24-hour care at home in New York. Could I, as certain well-intentioned friends suggested, turn him over to someone else's care? ("You mustn't let him take you down with him"; "One accident shouldn't ruin two lives," they said, trying to protect me.) No, I could not. During his first crucial year post-accident, my single task, unquestioned and unexamined, was to maximize his healing by supervising his recovery down to the minutest detail. I had no time, no interest, no energy for anything else.
The ideal of care I aspired to was the anti-nursing home. No drugs, no long naps. I would not allow him to doze his days away, even though left to himself he'd have done nothing else. For the eight remaining months of that first healing year, I devised stringent regimens to keep him alert and exercised. I took him to his therapies by subway instead of by taxi, forcing him to climb those challenging flights of stairs. I insisted, whenever possible, on walking to the library, the markets, the video store, the restaurants, stretching him to his limit, and once reached, I let him get a second wind in a park or a cafe before heading home. I reminded him to lead with the heel, not the toe, of his shuffling left foot, as his physical therapist prescribed.
At night we watched more movies than I'd have chosen to see in a lifetime. I'd have much preferred to read, but he refused to watch unless I joined him, on threat of going straight to sleep, which would risk his rising at dawn and rousing me with him. Instead I watched with him, then slipped out of bed to read after he was asleep, my only respite from his care. Compromise and accommodation, of which he was once a master, had now become my bywords. At the Museum of Modern Art, he insisted that part of the time I ride in the wheelchair, allowing him to push me. It was absurd! But because his inability to reason rendered my arguments useless, to humor him I gave in. Our luck, as soon as I was in the wheelchair, a woman from a seminar I attended stopped to chat with us, pretending that nothing was strange -- for which I was grateful, since I was too embarrassed to explain.
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