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Jewish World Review March 24, 2005 / 13 Adar II, 5765 Sandwiched between feeding tubes: The lessons By Marianne M. Jennings
http://www.JewishWorldReview.com |
Our daughter, Claire, has had a feeding tube for 10 years, and my mother is closing in on one year with hers. I am generationally sandwiched between feeding tube patients. Like Terri Schiavo, no one is really sure how much breaks through my daughter's or mother's neurological remnants. Also like Mrs. Schiavo, neither needs a respirator. To the clinical, the three are in a "vegetative state." The inexperienced callously refer to them as clumps of flesh that hover in a puzzling state for inexplicable reasons.
But those of us who live with and care for these magnificent souls question the analyses hurled about as cherished life hangs in the balance. I offer my lessons from a decade of exposure to the "vegetative state."
Doctors are almost always wrong. While I have the highest respect for the physicians who have treated our daughter and my mother and will be forever grateful for their selfless efforts and care, I know, and perhaps they do too, that these patients are unique. Doctors are inevitably taken aback at some point by Claire and patients like her who fight for their lives. If I had dug my daughter's grave each time a doctor told me she wouldn't live, I'd be in China by now. Their first death prediction was six months, then it was three years. When Claire turned 10, the good docs called her an outlier and threw in the towel on death predictions. Claire turned 18 two months ago. Doctors read CAT scans, MRIs, and EEGs, and conclude that, clinically, there ain't nothin' there. But doctors are not with these patients 24-7. Our Claire has a perfectly flat EEG. From what I can determine, Terri Schiavo is higher functioning than our Claire. Yet each morning when we touch the bottom of her shirt to prepare for her shower, she closes her eyes in anticipation of that shirt coming over her face. She clinches her teeth if you put a washcloth to her face because washcloths mean a good mouth cleaning and she, like all 3-6-month infants (Claire's developmental age) wants no part of that. She turns her head when you say her name. Claire's smiles come mostly in response to her mother's and her father's voices.
They feel, they flinch, they startle, they turn, they moan, they react, they have some memory, and no one truly knows how much gets through, what is serendipitous, and what is a real response. When in doubt, doubt the doctors.
Spirituality engulfs the vegetative. Be afraid. The life that exists in these struggling frames has had the judicial imprimatur of "So not worth it" placed upon it and the plug (tube) pulled. Yet the life that resides in these bodies so ravaged by immobility scares the livin' daylights out of me. If you already believe in a g-d, these souls will confirm your faith. If you don't believe, well, I have seen atheists and agnostics humbled, silenced, and in tears as they stumbled upon a spiritual experience that caught them unawares. These are the very elect of beings. Those who allow these lives to be taken, especially in reliance upon clinical reports, engage in the sentencing of innocents. Leo the Dog, hurled to his death in a California road rage case, engendered more outrage and due process.
These souls should have the rights and respect of cats, dogs, ANWR moose, and death row inmates. If I turned our cat loose on the streets and refused her daily Little Sheba rations, I'd be charged with misdemeanors galore and sentenced to community service at the pound. And our cat has no cognitive skills, save for the ability to sniff bumpers. Scott Peterson will enjoy hearings and representation over the next decade as he sits on death row, where he will die a natural death. Where is Terri Schiavo's lawyer? Who does indeed speak for her? When our Claire turned 18, my husband and I had to petition to become her guardians. We were investigated, went to court, and paid for a lawyer for Claire so that the state of Arizona could be assured that Claire was in the right home with decent folk. There was no clamoring at the court house for custody of Claire, and the hearing was mercifully short. Three months and $972 later, not including copying costs, we were appointed guardians of our own child. How do Florida courts get away with less, not for just guardianship, but for the life of the ward herself? If Congress can dictate disability benefits, medical privacy, and any number of long-term care issues, it should make public policy on euthanasia for the disabled who have no living will.
We are not here for them. They are here for us. I don't know why my mother has had to suffer physically at the end of her life.
I have never understood why our Claire has had a life filled with illness, epilepsy, and deformity, or why we have a child who will never utter her first words. But my family and I have learned more from these two non-speaking souls than in any of our many studies for degrees. We have had our priorities shaped and our characters molded through their stoic presence. Eliminating them would mean no more diaper changes, no more feeding bags, and no more "1 - 2 -3 lift!" as we struggle to rotate their positions. But if I lost my Claire or my mother, I would spend a lifetime longing to be of service again, to have just one more time to feel the warmth of those neurologically curled fingers.
I fear for the clinical callousness of this tube removal. We turn our backs on the closest thing this world has to offer when it comes to angels. This removal is a giant leap backwards as mankind denies its spirituality and harms the helpless. I worry about the precedent for our Claire and my mom, but I fear for us.
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JWR contributor Marianne M. Jennings is a professor of legal and ethical studies at Arizona State
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© 2005, Marianne M. Jennings |
Mitch Albom | |||||||||||
