Saturday, Aug 30, 2008
Like Terri Schiavo, Phil was never going to recover. Removing his feeding tube was a devastating decision. But at least my family got to make it privately.
Mar 24, 2005 | It took my brother two weeks to die after we removed his feeding tube. For two weeks he lay in a hospital bed that had been set up in our family room, with hospice nurses tending to him around the clock. He didn't seem to be in pain, though his movements stopped and his eyes stayed closed. Even though he was slowly dying, in some ways he seemed better than he had since a car accident left him brain damaged five and half years before. Maybe it was the natural light, filtering in through the picture window, casting some color onto his pallid face. Or maybe it was just that he was home -- a place with smells and sounds and textures so different from the fluorescent, sterile, stinking despair of the hospitals he had been living in for so long.
I've been thinking a lot about Phil's dying days as I've watched the Terri Schiavo spectacle unfold. Like most of us, I'm stricken by the situation, trying to sort out my position; I am now a wife and mother myself. But 16 years after Phil's death, I'm also still Phil's younger sister. I remember the decisions my family made back then, I remember how agonizing it was to contemplate causing the death of a loved one. There is never an unequivocally right answer. And I find it horrifying, as I listen to the moralizing and misinformation, to see a situation so private, so personal, so small and simultaneously huge, become subject to political grandstanding. As I watch Michael Schiavo and the Schindler family battle over Terri's fate, I feel the queasiness of not knowing the right answer all over again. I understand why Terri's parents don't want their daughter to starve to death, and I understand why Terri's husband wants to end her life. What I do not understand is the intrusion by the federal government. And even though it has been requested by Terri Schiavo's parents, it is just that -- an intrusion. I know -- better than George Bush, better than Congress, better than Bill Kristol -- that the question of whether Terri Schiavo lives or dies is a matter human and emotional, not political. My brother's story, like Terri Schiavo's, is tragic, unfair and perverse. It is the story of a young person who was lost in a split second, whose promise was extinguished.
On Dec. 14, 1985, Phil and his best friend Marc were driving to Saturday morning basketball practice when their car was hit by a truck with a snowplow on the front. Marc was at the wheel and escaped unharmed. Phil, a 17-year-old high school senior, suffered severe brain damage and went into a coma. After five weeks in intensive care, Phil entered a series of rehabilitation hospitals where he underwent years of physical, occupational and speech therapy. His coma lightened and he made some progress. Sometimes he could raise his thumb to indicate "yes" when you asked him a question. Sometimes after hearing a joke, the beginning of a smile formed on his mouth.
But those moments were few. Much of the time, Phil lay in bed. My mother spent hours with him every day. My father sat by his bedside and talked to him. I read aloud from our high school newspaper. And my older brother, Mark, watched Red Sox games with him and provided running commentary. Phil's prognosis, like Terri Schiavo's, was poor. There was little hope for any kind of meaningful recovery. Over time, his muscles atrophied. His eyes needed to be stitched at the corners to prevent drying, and his skin, once ruddy, turned pasty and cold.
For families living with a brain-damaged loved one, there is the before and after. Before Dec. 14, 1985, Phil was a star athlete, terribly handsome with dark curly hair and green eyes. The accident happened a few months before he would have gone to college, where he wanted to play soccer and maybe study international relations. He was the popular kid, a jock, a brain, almost absurdly well rounded. When he walked down the halls of our high school he was bombarded by hellos and high fives.
The after Phil, who jerked involuntarily, whose legs lay limp under coarse hospital sheets, was mostly unrecognizable to me. But glimpses of the before Phil, the scrappy athlete, would emerge, sometimes during the grueling physical therapy sessions, when he struggled to get past the barriers his body had placed in his way. In his laugh -- even though it was labored -- I heard the sound of the past, a time when he would tickle me until I turned red and was forced to surrender.
The picture of Terri Schiavo that has been beamed endlessly from TV screens and plastered on newspapers looks like something that might have been taken during one of Phil's rare breakthrough moments -- although in Terri's case, most doctors believe the gestures are involuntary reflexes, while Phil's attempts to respond could have been purposeful. But since they were inconsistent we'll never know. In both cases, though, the people behind the apparently smiling masks were not ever going to return. And yet, when we see the video of Schiavo replayed over and over on cable news, it's impossible not to wonder whether starving a woman who grins broadly at her mother is the right thing to do.
The rooms of the rehab hospitals where Phil lived were populated with other young people, victims of automobile and motorcycle accidents, boys and girls who had once been strapping and pretty but who now, like my brother, were shells. Every day the nurses would wheel the patients into the hallways for a change of scenery. They would sit there for hours, Velcro straps keeping their heads in place. Some days, I would walk down the hall and see patients slumped over their trays, helpless, pools of saliva in their laps. Sometimes I would find my brother this way. There was no "culture of life" in these hallways. These were not people with "disabilities" as Tom DeLay would like us to believe. They were not people with Down syndrome or deafness, who can hold jobs, get married, eat and speak. These were not people who could be dramatically helped by therapy, as Bill Kristol shamelessly and ignorantly suggested about Schiavo. These were people who were living on an intermediate plane between life and death. And when I looked at them -- sometimes when I looked at my brother -- I felt that death was preferable. Sometimes.
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