Fading into the Darkness of Dementia

Psalm 139 has the potential to speak for many of us our fears and struggles as well as to reassure us of God’s care and compassion.  Like the psalms of lament, distress, and renewed courage, this one speaks in general terms inviting us to plug in our own specific situations.

11 If I say, "Surely the darkness shall cover me, and the light around me become night," 12 even the darkness is not dark to you; the night is as bright as the day, for darkness is as light to you. (Psalm 139:11-12 NRSV)

Alzheimer’s Disease is a darkness from which there is currently no return in this life, and it is as my wife has called it since it took her own mother from us by degrees, a cruel disease.  The death of someone we love hurts us deeply and permanently because it takes the person away from us, out of our presence, removing the possibility of interaction and intimacy.  Memories may be good, and we are thankful to have them to keep and to share, but they are still a poor substitute for sight, touch, two-way conversation, and shared experiences.  Severe dementia, such as Alzheimer’s, is crueler than death because it takes the person we love or call friend away from us even as that person’s body and voice are still physically with us.  Our grief begins while the person we love is still with us, but not truly with us as the person we have known.

Shared memories are no longer shared, and we hold them alone.  I recall my mother saying to me, “I’m sorry to have to tell you this, Dick, but I really don’t remember your childhood.”  Her dementia was not so severe as that of many others I have known, and she continued to have brief times of true lucidity that were almost startling to me.  One man I would visit in a nursing home kept repeating the same phrase as I sat with him or pushed him in his wheelchair: “I can’t from here.”  What he said was profoundly true, but it was probably just truth by accident, by the coincidental voicing of what may have begun as his frustration but had degenerated into mere repetition without meaning.

It is bitterly cruel whenever death becomes a person’s only apparent savior, and a family’s only deliverance from the terrible tension between loss and presence, so that by death, grief may at last come without the apparent but impotent contradiction of the loved one’s lingering physicality.  The right voice but without memory, recognition, or appropriate response.  The beloved face but now blank, expressionless, or contorted by distress without sense or resolution.

One day as I was riding alone the nursing home’s elevator up to visit my mother, I repeated to myself the two verses of Psalm 139 quoted above.  Then I added, maybe aloud (I don’t know), “God, I’m holding you to that.  Please be with her in this darkness and hold on to her through it to the light beyond the horizon of our sight.” 

There are other forms of darkness into which we or people we love go willingly or are taken unwillingly.  Addiction and depression are two, severe mental illness yet another.  Alzheimer’s disease is a great fear of many, many people as they age, and dealing with the cruel condition in loved ones a daily struggle for many as well.  Often the two are linked.  As they care for parents or others being taken away from them a little more each day or each month, people feel the fear growing inside them that they might be looking at their own future and experiencing the future of their children.  We joke about it to relieve but also voice and share our fears.  We look for other people who have been through it and understand. 

Not long before she died, my mother said to me, “Well, there’s still God.”  Yes, Ma, there is still God, and you were the one who taught me that God cares, has compassion, desires relationship, and will not give us up.  “Even the darkness is not dark to you,” is not a philosophically apathetic statement of God’s omniscience and omnipresence, as though the psalm were merely reciting the attributes of the divine; it is both an affirmation (however shaky when we make it) and a prayer (however desperate and grief-torn) that God is there where we cannot go or else there with us in a darkness from which we cannot get ourselves back into the light.  There is no darkness into which we can go, be dragged, or just fade into which God will not come with us.  And where God is, there are life and hope.

How Far Is Gone?

          7 Where can I go from your spirit?
       Or where can I flee from your presence? (Psalm 139:7 NRSV)

To many of the world’s people, God is deus absconditis, the hidden God.  They behold the cruelties of a seemingly indifferent world and ask, “Where is God in all of this?”  The psalmist (the person speaking in the psalm) has presented God as quite the opposite – as God ever-present, always near with hand upon my shoulder.  So, the psalmist asks, how do I get away from this God who cares about me and all my doings, who knows even my thoughts and is concerned with all my choices and experiences?  It sounds as though the psalmist might want an answer, might desire to find a place apart from this caring God, but as we read the suggestions for leaving God’s presence, we discover a different meaning.  In a series of possible escapes, the psalmist names the places commonly regarded in that culture as outside the sphere of God’s presence and beyond the limits of relationship between God and a human being. 

        8 If I ascend to heaven, you are there;
        if I make my bed in Sheol, you are there. (Psalm 139:8 NRSV)

Hebrew poetry works with parallelism in couplets and triplets.  Here we find a couplet, but the outcome is unexpected because it contradicts the accepted beliefs of the time.  If I could go up into the heavens (the upper realm in the ancient world’s three-story universe), surely I would be approaching the throne of God, moving directly into God’s presence.  I obviously cannot escape God by going directly to the place where God is.  The second line would be expected to read, “if I lie down in Sheol (the shadowy place of the dead), you are NOT there.”  Sheol is almost by definition the place from which God cannot be praised; it is the creature’s condition after God has withdrawn the breath of life.  So, the question, “Where can I go from your spirit?” would seem already answered, but for this psalmist it is not.  The surprising answer is I cannot escape God by dying.

Christian have so gravitated toward the opposite pole of belief that it might seem that  for us the way to enter God’s presence truly is to die, but such a belief is unbiblical and contrary to the gospel of Jesus whose “kingdom of God” is a transformed condition of this world, not a realm where this world is of no further concern.

          9 If I take the wings of the morning and settle at the farthest limits of the sea,
          10 even there your hand shall lead me, and your right hand shall hold me fast.
          (Psalm 139:9-10 NRSV)

In the ancient world, gods and goddesses were tied to geographical places with boundaries.  When journeying from one land to another, it was considered wise upon crossing a border to offer a sacrifice to the god of the land entered, even if that god’s name was unknown to the traveler.  Best to cover one’s bases and not be caught trespassing.  In the Bible’s story, when Elisha the prophet has cured Naaman the foreigner of his leprosy, Naaman, wishing to devote himself to the God of Israel, takes as much as his donkeys can carry of Israel’s soil back to his own country so he can stand upon it to pray (2 Kings 5).  The physical connection between a god and a certain plot of land was considered that strong.  When the Babylonians take some of the Jews away from Judah into exile, the question becomes, “How could we sing the LORD's song in a foreign land?” (Psalm 137:4 NRSV) To be away from the land of the covenant was to be apart from the covenant God.  The prophet Ezekiel portrays God as leaving the Temple in Jerusalem and going to be with the exiles in Babylon, and the Prophet of the Exile (Isaiah 40-55) declares all the world to be the LORD’s and assures the faint-hearted people that their God is coming for them to lead them home.  Here, in Psalm 139, we hear a very personal affirmation that the psalmist cannot leave God’s presence by leaving the land of Israel, not even by journeying as far away as geographically possible.

    11 If I say, "Surely the darkness shall cover me, and the light around me become night,"
    12 even the darkness is not dark to you; the night is as bright as the day, for darkness is as light to you.
    (Psalm 139:11-12 NRSV)

God is light.  What would God be doing in the darkness, and if God were there, how would it be dark?  This one has many important ramifications for human life and faith, for our attitudes toward ourselves and toward each other.  Does God abide only the pure, the cleansed, the holy?  There are many ways in which people descend into darkness: addiction, depression, and dementia are quite common ways, and so are disgrace, alienation from family and friends, mental illness, terrible guilt, and often (because of the attitudes of others) victimization.  There are still places on earth in the 21st Century where a girl or woman who has been raped must be driven out or even killed for the sake of the family’s honor and the religion’s purity.  Some places of darkness we choose to enter, either by a direct choice or through the consequences of poor choices, but do we thereby condemn ourselves to being alone in the dark?  Other forms of darkness come upon us through no fault of our own.  What, short of warfare and torture, frightens people more than Alzheimer’s Disease?  Most of us would prefer death.  In my next post, I will relate Psalm 139 directly to my experiences with people drawn into the darkness of Alzheimer’s and other forms of dementia and with those who have loved them.

But first, I believe we, especially if we are religious, need to let ourselves be confronted by the radical faith expressed in this psalm.  It’s about purity.  No human, of course, is pure as God is pure, but that seeming confession of the shared condition our humanity most often serves, I find, as a shield the relatively pure use to protect themselves from fraternity with the relatively impure who disgust them.  If I am defiled or self-defiled, does God keep away from me?  Have I been driven or self-driven from God’s presence, concern, and love?  This psalmist declares that God is with us in the darkness, that God finds us when we cannot find ourselves, and that God stays with us when other people abandon us and even when we detest being with ourselves.  God sees us and cares to see us even when we wish not to see ourselves. 

In knee-jerk reaction, the person who loves norms and standards asks sarcastically, “So it doesn’t matter then that I defile myself, huh?  God doesn’t care, you say?  It’s all the same to God?  So, why not live it up, and to hell with being religious, moral, or responsible?”  Whether such defenses are naive or disingenuous, they are absurd.  What is it with the hyper-religious or self-consciously moral that they believe debauchery and defilement are so much fun?  Which kind of darkness I named above is a carnal paradise on earth?  Depression, addiction, guilt, shame, mental illness?  With any such paradise, who needs a hell?

This psalm changes religion’s question from purity to compassion.  God goes into the darkness with the person who by choice, error, or circumstance is plunged into darkness.  There is no darkness, this psalmist declares, in which I am left alone, no matter how alone I feel.  There is no place far enough away to be gone from God.

If this were a sermon, I would ask what then must be our responses to people who dwell in some form of darkness?  It’s not a sermon, so I’ll leave it at that.

The Mystery I Am

This post is my second in a short series of reflections on Psalm 139.  In the first, I contended that the mystery of God at which the psalmist marvels is not that God knows everything in our modern Western sense of having all the information there is but rather that God cares so much.  Hebraic thought and language are relational, and knowledge requires engagement, empathy, and sometimes intimacy.

We human beings are very limited in the degree to which we can know each other.  Long-married couples frequently anticipate each other’s reactions to situations or comments and may seem to sense each other’s needs in ways that might surprise the young, but even the deep knowledge of the other person such a couple shares is very partial.  This always partial nature of our human knowledge of others is a good thing.  Another person, even one deeply loved, should remain always a mystery to us, for two reasons. 

One is the delight of continuing discovery.  The basic affect called by Affect Script Psychologists “interest-excitement” requires novelty.  I enjoy hiking, but what would happen if I were to hike only one short trail and hike it every day?  I'd get bored.  Sameness is the enemy of interest and a damper on excitement.  That we can never fully know the person we like or love benefits the relationship. 

The second reason the other should remain a mystery to us is our need for enough self-protection to maintain our freedom from another’s presumption and interference.  “I can read you like a book” is an insult.  “Familiarity,” the old saw warns us, “breeds contempt.”  Presumed over-knowledge of the other person breeds exploitation also.  Con artists have just enough knowledge of human desires and defenses to be able to cheat their victims out of money, support, or sometimes even love.  Political campaign managers may develop the inflated notion that they have all the handles they need on the people’s emotional reactions to the illusions they spin, but, as we have just seen in the 2012 presidential election, they may, for all their swagger, be misreading the people badly.  Even in the closest of relationships, we want to be known enough to be appreciated, respected, and found interesting (maybe even exciting at times), but we do not want to be read like a book or to have someone presume to be able to do so.

The limits set upon our knowledge of each other also protect the person who cares about others.  Affect Script Psychology speaks of the “empathic wall” everyone needs to keep from being overwhelmed by the emotions of others.  Here’s the problem, or it would be a problem if it had no boundaries, no limits.  Several babies are in the same room, each pursuing his or her own interest in objects provided for their exploration.  Suddenly, one baby begins to cry, communicating distress.  When the cries go unanswered, the baby cries more loudly and insistently until distress gets worked up into full-throttle anguish.  What happens?  You know.  The other babies start crying too.  Affect is contagious because it resonates with the affect systems of others, somewhat as a tuning fork that has been struck can start sympathetic vibration in a nearby fork of the same pitch.  The vibrations travel from one fork to the other and set it to vibrating also.  The other babies have no knowledge of what caused the first to cry, nor do they care; they're just picking up the vibes.  Because other people’s emotions can resonate in us, we need an empathic wall to protect ourselves, but just enough of one.  Too high and thick a wall protects us from friendship and love.

Caring about other people is risky business.  It can disturb my peace of mind, consume my time and energy, and sometimes even trouble my soul.  It’s easier not to get involved but only allow myself to feel some pity, offer a condolence and perhaps a platitude or two, then move on.  If the other’s distress seems too far removed from my experience of what I consider normal or contrary to my opinions of what is right and proper, I may feel disgust rather than pity (the two are not so far separated as we might imagine).  Disgust is the anti-empathy, the extreme reaction against compassion.  Keep that contrast in mind if you are going to read the Bible which, I suggest to you, can be read and heard as the long, complex story of the triumph of God’s compassion over disgust.

Where’s the psalm?  This post is my second on Psalm 139, and so far I haven’t mentioned it since the first paragraph.  But I have been discussing it all along.  If passages of the Bible have contexts of their own in history, literature, and larger biblical themes (as they do), they have contexts also within human nature and experience – within us!  The psalms especially are designed to speak for us and not just or even primarily to us.  Psalm 139 is not doctrine but wonder.  The psalmist (by which I mean the person speaking in the psalm, not its author) is expressing amazement at mattering so much to God.  This psalm is far more “Wow!” than fact, commandment, or doctrine.

God knows me completely.  Nothing I do, say, feel, or think is hidden from God.  Good grief!  Are such thoughts comforting?  Talk about invasion of privacy!

LORD, you have searched me and known me.  2 You know when I sit down and when I rise up; you discern my thoughts from far away.  3 You search out my path and my lying down, and are acquainted with all my ways.  4 Even before a word is on my tongue, O LORD, you know it completely.  (Psalm 139:1-4 NRSV)

Actually, I find that, without appreciation of how much God cares, the intellectual notions that God is everywhere and knows everything may be more anesthetizing to the conscience than disturbing.  It’s sort of like the horror movie monster that is too big and powerful to be scary.  Omnipotence can bring more of a resigned shrug than an alarmed soul.  If God sees and knows everything, I have nothing to hide, and so why worry about it?  If I’ve gotten this far through life without worrying about what God thinks of me, why start now?  Objective, dispassionate all-knowing is more easily written off as irrelevant to life than feared.

But the psalmist is talking about the kind of knowing that cares, that feels life with me, that (as the next verse, verse 5, says) lays its hand upon me.  This is God with hand upon my shoulder, God who understands without contempt, who sees without disgust, who walks beside me rather than away from me.  This is God who knows me far better than I know myself and still longs for relationship, waits for my response, and persists in, yes, loving me.  This is empathy without manipulation even for my “own good.”  Here is the realization that keeps moving the psalmist to amazement.  That God knows everything is not news.  That God knows without disgust and scorn is some news.  That God feels life with me because God actually cares about me is real news.