Saturday, March 24, 2018

Dementia, Improvisation, and Overacceptance

I would never have thought about making a connection between dementia and improvisation if I had not heard this episode of This American Life: https://www.thisamericanlife.org/532/magic-words/act-two.

In this story from episode #532, Karen Strobbe and her husband Mondy struggle with caring for Karen's mother, whose symptoms of dementia are making meaningful communication increasingly difficult. Karen is constantly compelled to confront her mother, correcting her wrong or nonsensical statements: "No Mom, there are not monkeys playing in the backyard. We live in North Carolina." Mondy, on the other hand, applies his improv acting training to the situation—he decides to always agree with Karen's mother, even when she makes outrageous claims, more or less playing along: "Wow, those monkeys in the backyard sure are active today! Let's invite them inside to play with us." Karen is uncomfortable with going along with something that is not true, feeling as if she is patronizing her mother; Mondy feels that entering into his mother-in-law's reality is the truest thing he can do. This scenario reminds me of two books—one on improvisation and the Christian life, and the other about dementia.

Sam Wells wrote in his book Improvisation that the Christian life is very much like improvised drama—that is, we go about our day to day lives without a set script. When we think about how we should live (something we call "ethics"), no one gives us a pre-determined set of rules to follow. However, when faced with a choice or quandary, we will often look for one "right" answer—"Should I put my father in a nursing home?" or "Is it right to invest my retirement savings in the stock market?" In other words, most people don't think about ethics until there is a problem to be solved. Consequently, ethicists are considered to be specialists or technicians who determine what is right to do (or not do) in given situations. Wells would prefer to have us think of ethics less as problem-solving and more as an unscripted way of life. Like improv actors, we should all be more concerned with living a life that is figured out by interacting with others as we go along together. Improvisation is a primer on this way of thinking and living, which is known as "practical reason." Wells is essentially describing how the church, working as a troupe of fellow improvisers, can form a wise community. It is in the church that we create a way of life, and it is there that we work together to figure out what to do next.

The church lives out these practices by reading the scriptures—not as a script to tell us how to live minute-by-minute, but as a "training manual" that is grounded in Christ’s incarnation and resurrection (page 214). This perspective on the Bible is what Wells and others call "virtue ethics," where right actions are discerned through extensive practice of living out the scriptures in collaboration with others. This kind of ethics focuses more on the virtues we need for life and worries less about the specific "what-if" decisions that we imagine. Christians learn virtues as we worship, and Wells says that correct instincts (that is, virtuous responses) emerge in critical moments because they have been practiced repeatedly in worship. 

Mondy's interactions with his mother-in-law provide an example of this kind of practiced virtue—something Wells calls "overacceptance." If you listen to the story from This American Life, you notice that Mondy does not tell Karen's mother that she is wrong about the monkeys playing in the backyard. Rather, he takes her statement a step further by "overaccepting" it. Too often we think of ethics in terms of yes-or-no decisions, assuming that an ethical life consists of either blocking or accepting the options that are presented to us. Overacceptance shows instead that we live best when we see problems as opportunities to improvise. Wells gives an example of this way of living: A child wandered onto the stage minutes before a classical music concert was about to start, and she began to plunk away at the keys of the grand piano. Her rendition of "Chopsticks" filled the hall, much to the horror of the guests and the featured musicians—not to mention the girl's parents. But in an act of brilliant overacceptance, the evening's featured pianist strode to the bench and positioned himself behind the child. Whispering to her keep on playing, he then proceeded to reach his own hands around those of the child, improvising an accompaniment to go with the girl's simple tune. At the end of this impromptu performance the crowd cheered, the little girl bowed, and the concert pianist was warmed up for the concerto to follow. Wells challenges his readers to find ways to similarly overaccept the challenges of life, refusing to simply block or accept what comes our way: “To have thrown the child out would have been to block, to have let her play on would have been to accept; to weave a wonderful melody around her was to receive her as a gift, to overaccept” (pages 131-32).

Mondy's story shows how his improv training built in him the virtuous habit of overacceptance, which was especially helpful when confronting the ravages of his mother-in-law's dementia. He finds freedom through an option that is more than a simple Yes or No.

John Swinton’s book, Dementia, exposes how committed we are to these yes-or-no distinctions, thinking about life as a series of "this-or-that" decisions. This is especially true of how we quickly accept the terms of a diagnosis of dementia in a loved one. I don't mean that people always embrace such a diagnosis, nor am I suggesting that we should be more skeptical of medical science. I mean that our way of dealing with dementia is locked into narrow assumptions about how the body works, based on neurobiological descriptions of the brain’s defects. Even theological reflections on the nature of dementia tend to start with detailed accounts of brain structures and results of scans. This kind of thinking results in yes-or-no determinations—someone either has dementia or they don't, and once a diagnosis has been made we are trained to either accept it or block it.

Swinton wants us to recognize this tendency by showing how we use words to create a world that forces us into Yes-or-No categories. He writes that medical manuals do this, because their way of describing conditions does more than simply list a set of symptoms for a condition—they create a worldview, defining a new reality of diagnoses and disorders: "My point is that definitions and other ways of naming dementia are powerful storytellers that need to be recognized as such and challenged at the points where the story they seek to tell becomes misleading or just plain wrong" (page 54). It is difficult for modern people, schooled in the language of technology, to recognize that these scientific ways of talking are building such a world.

This is partially because we desperately want our scientific commitments to make sense of a condition that seems to rob us of our most treasured possession—that is, our mind. We are all heirs of the Enlightenment’s definition of what makes us human, with Descartes forming the most memorable value statement: "I think, therefore I am." If I can't think like I used to, then I cease to exist. "Dementia" is a seemingly harmless term, but it means "deprived of mind." This way of talking reinforces a yes-or-no way of thinking, and Swinton wants us to consider how quickly we accept the illogical assertion that someone can "lose" their own mind (page 63). For most Westerners the loss of the ability to reason becomes a "death before death." Since death is the ultimate No, we believe that there are few options when faced with a diagnosis of dementia. So Swinton calls us to tell counter-stories that create new ways of interpreting this condition. He urges us to build a new "language" that will allow us to inhabit a different world, creating new ways of thinking about and living with someone with dementia. Just like Mondy does with his mother-in-law. (And just like Bishop Ken Carder does here when the doctor refuses to speak directly to his wife about her dementia.)

These assumptions about mind and personhood affect how we worship. We assume that Christians are those individuals who "accept Christ" through rational and personal decisions. But Swinton argues that our humanity is not primarily contingent upon our own definitions and decisions. Instead, our memory—like our humanity—is a gift from God. This means that our identity is grounded in the reality that we are remembered, not that we are the ones doing the remembering (page 198). It is because God knows us first that we can have knowledge of God, which we in turn rehearse by remembering God’s saving work as told in the scriptures. These memories are imperfect, and our recollection of them is often disoriented, but that does nothing to diminish the truth of who God is or what God has done. Just as God’s own existence does not depend on our perception of God, our own personhood is not dependent on our ability to think or reason. The remembering that we do in every worship service ("do this in remembrance of me") is a gift both received and given—one that we give back to God. If the gift of remembering, as with the gift of life, is dependent on the giver, then our personhood is based on God’s acts of remembering, not on our ability to think about it.

Swinton's call for a new way to think about persons with dementia showed me that I typically pray in one of two ways: either for the prescribed treatment (inasmuch as there is one) to be effective, or for God to heal the person directly—and almost always in that order. In other words, I pray assuming that the medical community’s way of describing the disease is right. Only later might I ask God to break in and perform a miracle, but that request still fits in the yes-or-no scientific categories that I have unquestionably accepted. In other words, I ask God to remove an illness that I have accepted as a given. I confess that before reading this book I had never prayed for God to show me a different way of looking at a person who suffers from dementia.

Next time you gather for worship, think about all the remembering that is going on in the service. The reading and preaching of the Word remembers the acts of God. We are remembered by other people in the passing of the peace. We remember God’s works in the prayer of Great Thanksgiving (aka, the Communion Prayer), and we ask for God’s Spirit to help us to recognize that which is holy in each other. If Communion truly is a rehearsal of the covenant that God makes in our baptism, then coming to the Table is even more than a reminder—it is a communal act that forms our identities, showing that before anything else we are claimed and remembered by God.

A Manual for Personal Piety: The Book of Hours

Book of Hours manuscript kept at Harvard University People have always encountered God outside outside of the times and spaces designat...