Agnosia: “the loss of ability to recognize objects, persons, sounds, shapes, or smells while the specific sense is not defective.”

“…the former things will not be remembered, nor will they come to mind.”          Isaiah 65:17b   NIV

“There is a time for everything…a time to search and a time to give up, a time to keep and a time to throw away…”     Eccl 3:1,6

As we pull into the driveway, I ask Karen if she recognizes the house at 4 Dickens Crest; she does not. This was our home in Columbia for the seven years prior to our move to Phoenix two years ago, and while the new owner evidences a landscaper’s green thumb that always eluded me, the house looks much the same; I had hoped that Karen’s difficulty identifying familiar people (“prosopagnosia”, the isolated symptom that led to the first neurological testing ten years ago) would be limited to faces and not places.  We are on the last leg of a twelve day trip, first to Texas to meet up with older daughter and granddaughters, then Ohio to connect with Karen’s parents and sister, and now South Carolina to attend the Board meeting of Godspeed, the ministry we have served since its inception.

The list of things forgotten is growing. Seven days after the event, no memories of the reunion in Texas linger; of our time in Ohio, nothing remains. Only one day after Karen and her sister had time together to swing in a hammock, able to share the moment as they sang songs together (the music memory part of Karen’s brain is almost untouched by the disease which has stripped other sections), no recall of the entire trip existed. Today, as we attended the church where we had sung with the praise team for several years, she worshiped with childlike abandon, still able to recall most of the songs, but with no recognition of the place, and only feigned recall of the many people who hugged us and welcomed us “home”. Since Karen intuitively does not want to upset others (or herself) by saying “I’m sorry, I don’t remember you”, she acts toward everyone as if they are a cherished friend; I found out during this trip that such behavior can lead to interesting interactions in crowded airports, particularly with puzzled TSA agents and airline gate personnel (details later).

So, I ask myself, was this trip worth the effort? For that matter, was the life trip that brought us to Columbia nine years ago worth it? I think maybe the shock of finding that Karen did not have any emotional connection to our old home is what makes me wonder. She doesn’t feel nostalgia for the times and love shared therein, no lingering taste of the countless meals (some memorable, some admittedly less so) shared, no recall of sitting on our back porch, hand feeding mealworms to the bluebird who in turn nourished the fourth brood of the season in the birdhouse we received as a gift from our treasured cross-street neighbors. These are now neutral topics for Karen, items on the back pages of a newspaper from a town not our own. But, she also doesn’t recall that this was the house where we first began to live with cognitive disease; she is protected from the pain of remembering the shouting, the distortions, the tears, the feelings of hopelessness of a relationship torn by her denial of what was happening and my anger that it was happening at all, of the shame of hearing a daughter sobbing in her bedroom trying to block out sounds of her parental unit in sinful shambles as we blamed each other for not being able to fix what we could not fix together.

I long to be able to sit and hold Karen and start a sentence with “Do you remember when…”, but it is not to be. Not only has dementia broken into the rooms of her mind and stolen all the family pictures off the walls, it has redecorated the rooms to house a stranger. Once a lover of sea and sailing, Karen is now water- and sun-phobic, avoiding exposure at every turn (no more boating or beach trips for us); once appropriately but physically affectionate, there is no longer any walking hand in hand, reminiscing, as there is withdrawal from my touch and nothing to share. And perhaps most missed are opportunities to rehearse the countless times we together saw God work miracles in and around us as we traveled and ministered and served.

I am learning:

-        learning that it is not reverie that gives quality to life; the events of a day are no less meaningful if not remembered.

-        I am learning that there is a time to forget, to let go of memories; my struggle with Karen’s inability to retrieve the things that I want her to remember is also making me grateful that she can’t recall the things I desperately would want her to forget.

-        I am learning that dementia can be a constant reminder of how incredibly blessed I am that my God also has His own form of self-inflicted memory loss:  my pride, my need to control, my refusal to surrender, my need to have my wife and my life look the way I want them to, not just behaviors of then and now but those that inevitably I will cling to even tomorrow, of all of these, He says “… I will forgive their wickedness and will remember their sins no more." (Heb 8:12).

-        I am learning that there is a reason for all of this, that none of it is happening outside of God’s authority and plan: “When times are good, be happy; but when times are bad, consider: God has made the one as well as the other.” (Eccl 7:14)

-        I am learning that the portion of the verse in Isaiah with which I began this note is only the second part; the full verse in context holds promise and purpose for even the process of forgetting: “See, I will create new heavens and a new earth; the former things will not be remembered nor will they come to mind..." (Isaiah 65:17)

So, we will proceed with this trip, excited about the Board meeting as we welcome three prospective new members and hear of a resurgence of interest in developing a long-sought missionary respite center. I will strive to remember that the importance of each day is first and foremost rooted in the reality of my salvation, and that my initial emotional reaction to the events at hand should not be anxiety or frustration or sadness, rather gratitude that my situation is under the complete authority of a God who has chosen me, and thanks to the atoning work of Christ, a God who has also chosen to forget.

And to those of you who are in relationship, be it with friend, with spouse, with child, with other valued person in your life, whether that relationship is vibrant and cherished or is wilted and struggling, take a moment to take the other person by the hand, look them in the eye, and simply say, “I remember”.

It matters.

Barney, for Karen too

Let me hear from you: message on FB or e-mail barneydavis@gmail.com.