by David Hilfiker
Editor’s Note: David Hilfiker is giving a gift to the community by going public about his early stage Alzheimer’s. Here he reflects on a personal moment that speaks also to issues that can arise in community at large.
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My wife Marja and I were at a silent retreat at Dayspring with others from our faith community this past weekend. We entered the Great Silence after Friday dinner and remained silent until after Sunday morning worship. We slept at the Inn where each of us had a separate, simple room with a bed, desk, chair and sink. We had meals and met together in the Lodge, a separate building that has an almost 60-year-old history of continual silent retreat. It is a place that invites one into silence.
I have meditated almost daily for at least 15 years and have found quiet only in the midst of very long retreats, never in my daily meditation. With the diagnosis of Alzheimer’s, I had hoped (illogically, I suppose) that the slowing of my thinking would make my mind simpler and quieter, my meditation deeper. No such luck. As my mental abilities have decreased, it’s been just as noisy in there as ever. I had a small hope that over the weekend of retreat, I would find a bit of inner silence, but all I experienced was the “monkey-mind” of constant chatter.
But there was something else simultaneously more beautiful and scary.
I was sitting in the Lodge looking out through the floor-to-ceiling windows just before evening worship when Marja walked down the path through the woods from her room. I was suddenly aware of deep longing. She radiated an inner light. Lean and strong, she walked gracefully as though she belonged to those woods and that path. She smiled easily at several of our friends. In those few moments, the fullness of her inner beauty was revealed to me in a way I had never felt in over 50 years of our relationship. In that moment I felt extraordinarily grateful that we belonged to one another.
And then the future broke in.
As I watched her exchange glances with some others, I felt strangely excluded from those relationships. Suddenly, it was five or ten years down the road, and Marja had relationships with others that I was incapable of sharing or even understanding. I felt immediately jealous–I wasn’t able to offer her what she needed and she had to look elsewhere. It was as if she were having an affair. In that moment, I felt jealous of any other relationship.
Although muted, the feelings stayed with me as Marja sat across the room during the short worship that evening. Afterward I went outside into the dusk, and sat on the steps overlooking the meadow and woods. As Marja came out the door, I caught her eye and she sat next to me. We clasped all four hands together. Feeling our bodies touch, holding one another, I was comforted and felt safe again.
The jealousy was “real” even if the imaginings that prompted it were not. I “know better” than to live in the future like that. But that’s where I lived for those moments of jealousy. I was fearful of what the future might bring. Feelings of isolation are what I fear the most and what, I suspect, many with Alzheimer’s suffer greatly from. Jealousy has the potential to isolate me from the one with whom I share so much, who will be there with me forever.
Everything that happened in those few minutes bordered on the mysterious. Part of me feels very grateful for the emotional openness that has occurred as my illness has progressed. Part of me is scared. Those feelings, both sublime and painful, would not have been possible for me two years ago. In the end, of course, it is precisely this living in the future that causes so much of the pain of Alzheimer’s. I’ve not been falling for it much, but I sure did this time.
David Hilfiker, MD, is a member of the Eighth Day Faith Community and the founder of Joseph’s House, a welcoming home for men and women who are dying.
