|Our TBI, or Learning to Love What Is|
Alix Kates Shulman
Until his accident, my husband and I – he a sculptor, I a writer – had built our marriage on supportive independence, sometimes spending whole summers apart. But following his traumatic brain injury in July 2004, he became totally dependent, and our marriage changed forever.
The accident happened in a remote beach cabin on a small Maine island without a doctor. At 2 a.m. the love of my life fell nine feet from a sleeping loft to the floor – breaking his ribs and feet, puncturing his lungs, and sustaining multiple blood clots in his brain. Several hours after I called 911, a rescue boat transported us to Maine Medical Center in Portland. Scott was 75 and I was 72.
Human bones normally heal in six weeks, but for brains, healing is unpredictable and erratic, with few available treatments. When, following a medically induced coma, Scott’s breathing tube was removed and he could finally speak, he revealed shocking hallucinations and delusions, cripplingly compromised cognition and short-term memory loss.
“It’s going to be a very bumpy road before your husband is in the clear,” warned the head of the Trauma Unit; but the ICU nurses assured me that Scott’s wild ravings were caused by temporary “ICU psychosis,” which would disappear when he got home. Only a lone speech therapist hinted that Scott’s memory might not return.
After transferring Scott to NYU Hospital’s Rusk Rehab unit, I still had no notion of what was in store for us. No doctor ever mentioned Traumatic Brain Injury (“TBI”) to me; only after a friend did, could I research it on the Internet—alone at night. When I questioned Scott’s doctors about him, they were necessarily evasive, since there was really no predicting how much, if any, cognition would return. A prognosis was further complicated by the fact that before his accident Scott had already suffered mild memory impairment, probably as a result of seven hours on a heart-lung machine a dozen years earlier. One doctor said, “It could be a year or more before we know the extent of the brain damage.”
Somehow I misunderstood this to mean that Scott would recover within a year, and, as I resolved to devote the entire year to healing him, no one set me straight. For three months of hospitalization I sat beside him from 8 a.m. to 8 p.m., determined to protect him from the seemingly inevitable daily hospital mishaps (including another fall on his head!), soothing his terrors and waiting out his delusions.
As most brain healing occurs in the first months after trauma before gradually tapering off, seeing Scott’s steady though limited progress, I continued to believe in his total recovery after I brought him home. Although his incapacities were acute – he couldn’t remember how to use his keys, work the phone, dress himself, find his way back from the lobby, or recall our neighbors’ names, much less make art again, and he didn’t know the century, year, or season – he did recognize his family and friends, with whom he could exchange rote pleasantries. Buoyed by each improvement, however miniscule, while dismissing each decline as a mere temporary setback, I embraced his recovery as my mission, my calling. Unwilling to trust anyone else with this crucial undertaking, each day of that year I tried to keep him stimulated and active and never let him out of my sight.
But by the first anniversary of his fall, I reluctantly had to admit that he was deeply and probably permanently disabled, despite his initial improvements and the doctors’ continued refusal to make a prognosis. While physically he was much better – he walked, ate, slept, and spoke normally again – his ability to think or remember remained devastatingly damaged. As I gradually realized that his brain might never heal, I sometimes felt myself slip toward despair.
Seeing me struggle to maintain my equilibrium, some concerned friends suggested that I arrange for his care elsewhere and get on with my life – as if his life were over and I could sever mine from his without consequence. But this man, with whom I went back half a century and had lived my most fulfilling years, was too dear, too close, for that. Whatever others might think, I knew that beneath his murky confusion, his self remained intact. His optimism and charm, his aesthetic passion, his deep-rooted modesty, sincerity, and loving nature kept breaking through the fog, despite the daily bouts of agitation and sporadic violence typical of TBI.
Nevertheless, I knew that normalizing our new lives would require crucial changes - including that I resume writing. So I hired a part-time companion for Scott, to give me a few precious hours a day to work. To Love What Is: a Marriage Transformed, published in 2008, is the memoir I wrote about Scott’s TBI, my caring for him, and our dramatically altered lives.
I began to seek help in new places. First, I discovered that indispensable handbook of dementia care, The 36-Hour Day. It not only explained Scott’s most unsettling behaviors as typical of dementia, it also offered useful tips for dealing with them. (Too bad the hospital hadn’t offered or recommended that book to me before Scott’s discharge!)
Next, I joined a caregivers support group, co-sponsored by NYU Langone Medical Center and the Alzheimer’s Association, New York City Chapter. Our group freely discussed the many practical and emotional issues that outsiders shrink from, and was for years a weekly source of strength, advice and comfort to me. (See my New York Times essay called “Caring for an Ill Spouse, and for Other Caregivers” about our support group at www.nytimes.com/2011/05/10/health/10cases.html?hpw.)
Finally, knowing that doing something is more empowering than doing nothing, I became an activist. After arranging to donate our brains to research, I began writing, speaking and blogging about people with dementia and their caregivers.
Humans are a wonderfully adaptive species. We can survive almost anything. When the 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 its limitations, no matter what fate has in store. Adapt to it, struggle with it, milk it for all you can, love it. This view, which required complete acceptance of Scott’s condition, sustained me, both during the six difficult years I cared for him myself and the three years of round-the-clock paid homecare that his condition eventually required.
We could certainly have used the financial and social support that any decent health care system would offer the chronically disabled and their caregivers as a matter of course, instead of the current policy of relying on the unpaid labor of millions – especially now that Scott’s long-term care insurance is running out. My feminist consciousness also bridles 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 systems has not lessened my desire to do my best for him (and us).
Now, nearly a decade after his TBI, Scott still walks (slowly, with a walker), feeds himself, and daily bestows affection on me and his superb aides. Though his speech has greatly deteriorated and, like someone with advanced Alzheimer’s, he continues his inexorable decline, his agitation is gone and his sweetness fills the room.
Alix Kates Shulman has written 14 books, including five novels and three memoirs. To Love What Is: A Marriage Transformed, is her memoir about life with her brain-injured husband (available in both paperback and e-book). Her PsychologyToday blog, “Love & Dementia,” is at www.psychologytoday.com/blog/love-and-dementia. Her website is www.AlixKShulman.com.