Clearings

Years ago, a member of my support group remarked: “There’s only one direction this disease goes.”

It was a little jarring to hear, but he was right. Those diagnosed with Alzheimer’s live with a terminal disease that has no cure.

While the direction of the disease is predictable, its movements along the way are something else entirely. Like shifting fog, there is a rising and descending, places of clearing followed by a return of thick haze. We have no warning of its movements, no way of knowing when a cloud will cover what was once easily seen.

It was October 2017 and we had returned home after an appointment with the eye doctor. Dale walked into the living room and said, “There’s something wrong with me.” I said, “I know. You have two diseases: Alzheimer’s disease and glaucoma.” I briefly explained each one. I realized by his emotional tone that it was the Alzheimer’s disease that was suddenly “news” to him. He said somberly, “I never thought it would do it.” I said, “I know. None of us did.”

For seven years, Dale had been in full awareness of his condition. At some imperceptible point, a cloud had descended on that knowledge and he was experiencing the news as if for the first time.

We sat together for a long time, mostly in silence, my arm around Dale, and our dog Lucky Day on our laps. I reminded him how brave he was to participate in the clinical trial. I told him how he helps people in our community every day with his warmth, humor, and compassion. He said several times, “Well, it is what it is.” I affirmed this with statements about living each day well, doing the best we can. Finally, he said, “Well, I’ve had a good life.” I agreed. Then he said, “I’ve helped people.” I affirmed that, too, and told him he was still helping people.

As my heart was breaking for him, it also felt like the chasm created by the disease was bridged. It was as if Dale had suddenly stepped out of the fog into a clearing and I could see him. We stayed in this place together for more than four hours.

Then as silently as it appeared, the clearing was gone.

I could see it in Dale’s face as we walked around the pond in our community later that afternoon. The weight of sadness brought by the news had been lifted. And a new clearing appeared, the kind that arises from the heart, disease or no disease. Dale began talking about the close calls we have had but that God has saved us. “Thank God,” he said, and then, “God is best!”

Amen, Dale. Amen.

Accompanied

(As the news of the pandemic and its effects grew more dire, I became hesitant about sharing anything but the most positive parts of our journey with Alzheimer’s. In no way do I want to add to the distress felt by so many. However, I know there are many others still walking this same path with us. And there are now countless others suffering in new and shocking ways. I decided to share the following short piece, “Accompanied,” which is drawn from a 2015 journal entry. I post it today—on Good Friday amid a pandemic—with my fervent hope and prayer that all who walk in darkness sense in whatever ways are most meaningful to them that they are not alone.)

Images of darkness surround me.
I see gaping holes…
deep craters…
where  
light-filled neurons once carried
memories…abilities…capacities.
Now darkened. Destroyed.
Eaten away by disease.
Gone.

Crying, weeping…
I am standing in these places
where life once was…
where light had been…
now
new tombs…
barren and dark.

Suddenly the Holy One is beside me,
doubled over with grief, weeping with me.
I am not alone.

Where can I go from your spirit?
    Or where can I flee from your presence?
If I ascend to heaven, you are there;
    if I make my bed in Sheol, you are there.
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.
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: 7 – 12, NRSV