The loss of daylight hours that November matched my mood.
The news came by phone from the neurologist at Emory: “The result of the spinal tap confirms the other testing we did and tells us what we suspected. It is Alzheimer’s disease that is causing Dale’s symptoms.”
There was strange relief in knowing. We had no other way of explaining the unusual changes. But alongside the relief was a sense of dread: we both knew what was ahead. We had already witnessed the disease take the lives of Dale’s father and brother. The news that we would now watch it ravage Dale’s brain, stealing his memories and abilities, was devastating to me.
Holiday activities took some of our attention, as did selecting a clinical trial to join. It helped to have something to look forward to and feel as if we could make a difference for others. Still, the diagnosis was a new reality and we were struggling to adjust to it.
Seated on the couch in our living room two months after his diagnosis, Dale felt he received a gift, an “epiphany,” as he put it. He told me about it and wrote the following:
is a gift
that only each person can find within
and choose freely
to embrace daily
come what may.
Having found this inside job/gift
I’m embracing it for all it’s meant to be…
for all of us.
It’s God’s free gift, with no strings attached!”
I watched Dale’s attitude shift as he internalized this message. His deeper acceptance of our new reality helped me. If he could live this way with a disease that was to steal so much from him, I could at least lift my gaze and walk with him.
Years later, a friend noted Dale’s happiness and remarked that perhaps a seed was planted when Dale wrote these words. Perhaps. There surely are mysteries to this process. What does remain as the disease cuts its swath through the brain? Intentions, capacities, and memories are lost in such unpredictable and heartbreaking ways. I know that the light I see in Dale now—his big smiles, easy laughter, and warm greetings—could be lost, too, at any moment. So, I am grateful for his happiness now, for whatever reasons it remains. May I learn more and more to embrace the gift for myself, “come what may.”
Postscript: Dale received his “epiphany” in January 2011. Here is a link to a video of Dale reading it in November 2015 during an interview conducted by Bishop Kenneth Carder for a Lutheran Theological Southern Seminary course on dementia: https://youtu.be/Sff-fgZ8Des