The name of Terri Schiavo is seared into our collective consciousness. Her personhood is not, because by the time she became a celebrity she had none. Terri was bulimic, and, whether her body draws its last breath this week or twenty years from now, bulimia killed her. It killed a college friend of mine. It almost killed me.
There’s an old saying that comes to my mind, occasionally. It goes something like this. “In some ways, I am like every other person. In some ways I am like some. In some ways I am like nobody else who has ever lived on this earth.” To the extent that Terri was like nobody else, I cannot speak to her life experience or her desires. But to the extent that Terri shared with me the disorder of bulimia and the complicated yearnings of personhood, I can and must.
Sometime close to fifteen years ago, Terri Schiavo stuck her finger down her throat and retched the partially digested remnants of her last voluntary meal into her toilet, or a bucket in the closet, or the kitchen sink or a hastily scraped hole in the back yard. Or maybe she tried to drink a gallon of water, or swallow a box of laxatives and another box of diuretics to get rid of sense of bloated contamination she felt whenever she ate. She messed up her electrolytes – potassium I assume—and her heart stopped working. So did the vast majority of her brain, the part that made her Terri, and bulimic and a person.
Somebody found her and, using extraordinary measures, after ten minutes got her heart to start beating. Unlike a brain, you can shock a heart muscle into functioning. Fifteen years ago that probably meant that a strong electric current contorted Terri’s waxen body. It lurched. It seized. And her damaged heart started beating again. Somebody forced air into Terri’s lungs. They got her onto a stretcher and into a hospital where they cleaned off whatever vomit and urine and feces had oozed out of her orifices. They’ve been doing so ever since.
From my own experience with bulimia, and my experience as a therapist working with bulimics and my experience being a friend of bulimics, I can tell you this. Unless she was unusual, Terri had mixed feelings about being alive even when she could walk, talk, think, feel, and eat. And unless her parents were unusual, too, they felt horrible about that—anxious, frightened and determined to keep their daughter alive. The defibrillator may have done its job, but they, as parents, failed. They failed because what they really wanted was Terri – their beloved daughter, who could laugh and learn and love. What they got was Night of the Living Dead – a marginally animated corpse, the jerky spasms of which have nothing to do with laughter or love or the person Terri had been.
It is an ageless story. Monkey’s paws and magic wishes. Journeys across the River Styx. Grave robbing and pacts with the devil. Miracles, witchcraft, and stolen souls. Parents desperately want their children alive, and when they are dead, they want them back. Terri’s parents are Christians, and it may seem odd to some that rather than have her in Heaven, they prefer their daughter vegetative and drooling, with a feeding tube poking out of a tracheotomy or PEG, and a catheter, and a colostomy or diapers, and white patches of gauze covering layers of antibiotic ointment covering deep bedsores. But the news pictures tell the whole story. They don’t show the drool or the tubes or the pressure points where Terri’s skin dissolves. They show a face, eyes open–a pretty face. It is the face of a dream, the shared dream of Terri’s parents that she herself – not just her body – is alive somewhere behind those eyes. It is the dream of a parent who touches the soft cheek of a sleeping child and is flooded with memories and love and the promise of morning.
What would Terri have wanted? Her husband says: the permission and blessing to continue her journey. Her parents say: to be loved enough that she be counted among the living. In other words, the people who knew her best disagree. But you know her, too. Terri was a person, and you are a person, which gives you also a basis for offering up an answer to this difficult question. So, look in your own heart. Don’t ask what you would want for your child, because often we love our children more than life itself, and this question can be only about life itself. What would you want for you?
In the past fifteen years, brain imaging has allowed doctors to map precisely which cells are active at any given moment and which are not. They can map activity, functions, scarring, regions that are altogether dead, and those that are simply not working. In the case of Terri, fifteen years of technological advances have only allowed physicians to assert with more confidence that Terri is gone and she’s not coming back.
But, assume you could be in her situation, not gone, but conscious. Would you want fifteen years of the feeding tube and catheter and bedsores, of mute paralysis in a wind-up bed between four white walls and a white ceiling? Or, rather, would you choose it over death and whatever comes after? Would those visits from your achingly loyal family and the chirpy nurses who put fluid in your IV and sponge bathe your genitals and carry away your baggies of excrement—would they be enough? Would they be enough if you had a television on 12 hours/day or a radio or some other form of passive stimulation?
What would you want for your family – the tenderness and anguish of those visits, the sweetness of hope, their lives lovingly built around yours–or the freedom to move on, to let you fade, to remember your good times and to grieve your irrevocable absence?
And if, dark moments aside, you are a lover of life – of that around you as well as your own – how would you measure the other real life costs of holding on? Money is a place marker, a way that we bank and trade our efforts; consequently it gives some measure of the societal effort required to extend life. In Terri’s case, a million dollar malpractice settlement was spent on attorneys’ fees and medical procedures; millions more in Medicaid dollars have paid for the room and those nurses and those disposable tubes and bags. Additional millions have been spent on a prolonged and excruciatingly public debate over what should be done with the doe-eyed sleeper, the soft shriveled body that lies on Terri’s high-tech mattress.
Would you hold onto life, if life was only knowing and staring and breathing? What if it was only staring and breathing, as it seems to be in Terri’s case? How else might you wish that those millions be spent – On children with cancer? On grade school playgrounds? On wilderness that will delight future generations? On loving care for orphans? On peacemaking? On a cure for the malaria that has killed millions while Terri lay breathing? On a recreation center for your community? On a home town carnival to rival New Orleans? On a nest egg for your children or grandchildren? What is your wish list? And would prolonging your own life be at the top? And, if so, for how long?
These are hard questions, and yet we must ask them. We must for several reasons. First, because right now, each of us has a choice. Not, perhaps, where the money will be spent, but whether it will be spent on feeding tubes and catheters. And whether those we love will ever face the anguished questions that have haunted Terri’s loved ones for more than a decade. A living will is a gift to anyone you care about. Second, these are conversations we need to have about each other, for each other, with each other. People make end-of-life decisions for mothers and fathers, husbands and wives, grandparents, siblings, daughters and sons every day. Every day. Third, when we face life’s dark possibilities together with eyes wide open, we immerse ourselves in our deepest spiritual values in all their complexity. We anchor ourselves to those values. In doing so, we strengthen our collective voice so that the meaning in and implications of our love for life cannot be blurred by dogma or political opportunism seeking to trivialize that which we hold most precious.