The Patient Body: Faith, A Chronic ConditionApr 8, 2014 • 5:43 pm 2 Comments
By Ann Neumann
Wherefore is light given to him that is in misery, and life unto the bitter in soul; Which long for death, but it cometh not; and dig for it more than for hid treasures. KJV
Each faith is unique. That this may be a result of our individualistic times, our contemporary emphasis on rights and conscience, or perhaps it’s an artifact of our snowflake brains doing their own unique things. Regardless, if you call yourself a Catholic, that identifier is fraught with nearly limitless qualifiers. You’re Catholic but you haven’t been to mass since high school. You’re Catholic but you take your birth control pill every day. There is an infinite number of ways that each of us can–and every day, do–interpret our faiths and live them out, Catholic, Jewish, Protestant, Pagan or whatever.
Take my own case in point. I was baptized in March of 1991, twenty-three years ago, in the distinctly 1960s-era sanctuary of Our Lady of the Visitation, a Catholic church overlooking my college campus. The dappled and diffused colors of stained glass were cast across my new life of faith, my very handsome Catholic boyfriend–and sponsor–was looking on. He had outbid the plain church of my family with the grandeur of Catholicism’s rituals. My young passion for the man intermingled with my young passion for the church. I loved the incense, the sitting and standing in unison, the ornate chapel and priests’ robes. The embrace of God’s love.
The passion has, over the years, faded. A few weeks ago I attended Ash Wednesday services at another Visitation church, this one in my Brooklyn neighborhood. I walked sheepishly home with an ashen cross smeared on my forehead, my first in about two decades, my early ecstasy for the church as distant as that early romance. Yet, I planned out my Lenten sacrifices. According to the church, I should have fasted on Ash Wednesday and should again on upcoming Good Friday. As well, the church calls for me to not eat meat on Fridays. While I did give up foods and habits for the Lenten period, I wouldn’t say that my sacrifices pass Vatican muster. Sometimes I forget. Sometimes I flout the rules of the church and even my interpretation of them. Too, my reasons for (haphazardly) taking up Lenten sacrifices this year might not be what the Pope would want. (What can I say? I was eating too much butter.)
But that’s what believers do. All of us. We move in and out of proximity to the church, our church, either given or chosen. It can be the church of the high ritual or the church of the forest trail, but our relationship with those reverences is never static. Like the 78.2 million Catholics in the US, it’s kind of hard to make assumptions about what I believe based on what I call myself, even when I call myself Catholic.
As Peter Manseau wrote in a recent op-ed for The New York Times, the church is constantly changing, but there is one thing, he notes, that remains “a truth as old as the church itself: Despite its primary definition — universal — there is no universal agreement on what [Catholic] means.” Manseau continues:
Who is a Catholic? Is it a matter of baptism? Belief? Loyalty? Psychology? For some, the answer depends on tests of political purity. For others, who may no longer receive the sacraments but continue to identify with the faith, “once a Catholic, always Catholic” is not just a principle of canon law (semel catholicus, semper catholicus), but the diagnosis of a chronic condition.”
Catholic schmatholic, you may say, what does it matter how believers identify themselves? At least here, in the US.* What, in short, are the real-world consequences of how we name the state of our soul? Here’s one: Sylvia Sodden is being kept alive on artificial support because her sister, Esther Feigenbaum, says that Sodden was born an Orthodox Jew. She is prepared to do what it takes to ensure that Sodden dies one. According to Feigenbaum, that means keeping her 78 year old sister, who is reportedly in a vegetative state, on a respirator indefinitely.
Sodden converted to Catholicism on Christmas Day 1957, at the age of 20, a point no one contests. Her godson and fellow Catholic, Joe Arrigo, insists that Sodden would want her artificial support removed.
“Sylvia told me she didn’t want to end up like this” Arrigo told the New York Post. “I don’t see how they can impose their religion on her. She hasn’t been Jewish in 58 years.”
The challenges of the case strike me as two-fold: What does religious affiliation mean and what is the definition of life? Is Sodden obligated to make medical decisions according to church dictates? Only if she chooses to. Regardless, she chose to name a medical proxy, Arrigo, to make her decisions for her. She asked him to exercise his conscience should she become incapacitated because she trusted he would do the right thing.
And yet, a New York judge has given credence to Feigenbaum’s claim that religious identity necessarily determines medical decisions. On the 18th of March, a Brooklyn judge sided with Feigenbaum. He removed Arrigo from medical proxy; Sodden had legally appointed Arrigo in 2011.
Does claiming a faith mean subscribing to the every dictate of the church’s leadership? Of course not, or there would be only a handful of Catholics in the world. Indeed, faith is doubt, denial, regret and return. No more do the teachings of a faith one happens to be born under–or like Sodden and I, one we adopted in our twenties–define our choices regarding health care than what we should eat on Fridays. We pick and choose what we believe will make us good believers. And increasingly, these decisions are leading each of us to à la carte religious adherences because we don’t think deviance from church doctrine will send us to hell. Apparently the Pope doesn’t either; “Who am I to judge?” he asked recently.
In other words, there is limited consensus on what it means to name your faith. And yet, it’s not uncommon to hear in the media or in general conversation that Catholics, for instance, don’t take birth control pills. Or don’t eat meat on Fridays during Lent. Or that Catholics believe in transubstantiation (that the Eucharist, bread and wine, become the body and blood of Christ, a concept that played a large role in the Protestant Reformation). To be honest, you’d be hard-pressed to find a Catholic who abides by all these doctrines. And yet, it is common as day to hear “Catholics believe…,” and “Muslims believe…” as if entire spectrums of human experience can be summed up in one religious identifier.
The vying for Sodden’s religious allegiance is fierce. The evidence that Arrigo’s mother, Gloria, a long-time friend of Sodden’s, provides as proof of the vegetative woman’s Catholic faith is also a claim of pure belief:
“When she prayed for something, it always seemed to happen in the right way. She was definitely very good Catholic people.”
All accounts of Sodden show that she felt free to choose her own belief structure, that doctrinal obedience wasn’t required to structure a faithful life. But those who want to keep Sodden “alive” on machines and those who don’t equally use their interpretation of her faithful adherence to such structures to prove their point.
The challenges of the case are problematically summed up by the New York Post and, sadly, have more to do with how each party understands the limits of medicine and the human body than it does their ideas of faith:
The two sides disagree over Sodden’s mental state–with Arrigo claiming she is in ‘a vegetative state’ and Feigenbaum saying she is a ‘living conscious adult with a right to remain living.’
Conscious or vegetative state? This determination, while not clearly documented in the media about the case, is not a matter of opinion–or even perception (Feigenbaum wrongly assumes that, because her sister’s “eyelids flutter periodically” she must be conscious)–but medical diagnosis. That the definition of life–when it begins and when it ends–could get mixed up inside the paradigm of a faith based on the death and resurrection of its holy leader, is not surprising. But in practical terms, in this country, in this era, medical science increasingly dominates our understanding of what life is. Still, nothing trumps science like an enthusiastic religious claim. In their grief, Arrigo and Feigenbaum have both developed clear ideas about what Sodden believed and what she would want, ideas that claim the authority of their respective belief systems. As Sodden’s legally designated medical proxy, it’s hard to not trust Arrigo when Sodden herself did.
In this contest, a New York judge erred on what some would call the “side of life,” clearly a politicized formation of patients’ rights that doesn’t acknowledge the costs of prolonging fragile, failing lives, but one the law continues to find the easiest to defend.
*Clearly, some religious identifications have significant consequences across the globe. Muslims in Russia. Christians in Egypt. Sikh’s in Arizona after September 11. My question is finer: How can US courts use individual religious identification to enforce medical decision-making?
“The Patient Body” is a monthly column about the intersection of religion and medicine. Prior columns can be read here:
Ann Neumann is a Visiting Scholar at the Center for Religion and Media at New York University and contributing editor at The Revealer and Guernica magazine. Neumann is currently writing a book about a good death.