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.
At the end of my sophomore year of college, five and a half years after the accident, Phil developed the first serious physical complication of his head injury -- pulmonary edema, a condition that caused fluid to flood his lungs. Phil struggled to breathe for hours. It must have felt like drowning. The doctors predicted more of these episodes for which there was no effective treatment. I was taking my final exams when my parents -- who had divorced six months before Phil's accident but made all decisions about his care together -- called to tell me that they thought it was time to let Phil go. For the first time since the accident it was clear he was feeling pain. Still, I protested. Simply being able to touch my brother, to hold his hand and read to him was better than having him in the ground, I argued. I imagine that this is what Terri Schiavo's parents are feeling.
When I returned home and went to the hospital, though, my mind began to change. Walking down the corridor, I could hear my brother's wheezing. When I got to his room, I saw his strained face. His discomfort was unmistakable. Nonetheless, part of me believed, however irrationally, that the condition would improve. I had had those thoughts before, at the beginning, when I thought that Phil would get better in time to graduate with his classmates and go on to college as planned. I had seen the made-for-TV movies based on "true stories" about the person in a coma who one day suddenly wakes up asking for a cheeseburger. When your brother is slipping away and unreachable, you have to believe those stories -- even when the doctors never speak optimistically, even when they tell you in all of their years of practice they have never seen a miracle. But then time passes.
About a year after the accident it became clear that the Phil we knew was never coming back. He had been in a coma too long. But because his vital organs were functioning strongly, we were told Phil would likely live to middle age or beyond. And so we resigned ourselves to a life with Phil in the hospital where we would care for him with all the love we could muster. My grandmother used to say, "At least we still have him." But then the pulmonary edema developed, and it changed the equation for all of us.
My family's situation differs from Terri Schiavo's in two important ways. Ultimately, we all agreed about Phil's care. If my parents' divorce had been acrimonious, if they had opposing religious or moral views, then maybe Phil's case would have found its way to court, too. What's more, Phil was going to suffer more painful episodes. We chose to end his life to spare him that. As far as I know, Terri Schiavo is not in pain, which makes decisions about her life far more complicated. Though she may never fully recover and remain in hospitals for the rest of her life, maybe the fact that her parents can hold her hand is enough of a reason to keep her alive. I don't know.
Indeed, I cannot know for sure whether Terri Schiavo should die. A few years ago, I read an article about brain research in the New York Times. New technology suggested that many people in vegetative states were more cognitively aware than previously believed. The article made me feel sick. Had we let Phil go too soon? If we had waited, would new technology have provided us with a window into this inner life and more options for his care? I wonder if in some way the pulmonary edema provided us with an out, a way to stop Phil's excruciatingly sad life and retain some of the "before" memories before they were subsumed by the reality of who he had become.
But I also know that by managing his pain, making sure that everyone who loved him had the chance to say goodbye, allowing him to die in the house he grew up in, we did the most loving thing we could.
I think about Phil's last days. I remember drinking tea in the middle of the night with the hospice nurses and telling them about who my brother used to be, making sure they knew that the motionless body in the next room wasn't all that they saw. I remember opening the window to let the hopeful June air blow in the room. I remember going out for a drive with a friend and coming home and learning that he was dead. We all sat with his body for a while. We cried over him, and spoke to him. And then he was taken out the back door and away.
I think about those moments and juxtapose them with the cameras and prayer vigils and placards, flash bulbs and commentators who are camped out in Florida waiting for news of Terri, watching the clock and debating the merits of her life in death. I think of our president's middle of the night bill-signing to "save" an incapacitated woman he does not know. And I think of all the places where government should intervene and take an interest in the well being of its citizens. Those corridors where I used to see the slumped husks of human beings are not among them. Those halls are for families -- perhaps sad and torn, perhaps people who may not know for sure -- but still the people who know best.
Phil would have been 37 next week. Had he lived, he would still be in the hospital, not dead but not alive either. I have a son now, a 1-year-old boy named for his uncle. If Phil were alive I would bring my son to meet him. I would put their hands together, and I'm sure I would cry. But I cry for Phil anyway. I will tell my son about his uncle, about the before and after, and he will live on in my stories and in the smile that lights up the face of his namesake. My brother is gone, but he was gone long before the feeding tube came out.
I'm still not sure that Terri Schiavo should die, and the fact that her family is divided on the issue makes her story all the more tragic. But I do know this: The Schindlers have run through their legal options and at every level the law has backed Michael Schiavo, who says his wife would have wanted to die. I don't know how to second-guess the courts' decision, and I know a lot more about this topic than Congress does. The political grandstanding over Terri Schiavo, the fact that she has become a political pawn, sickens me. How odd that it took this congressional circus to show me that my brother, and my family, were blessed to be able to suffer our tragedy privately.
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