I have Alzheimer’s disease. I’m sixty-eight, have had symptoms for a little over two years, and was diagnosed last September. These last eight months have been almost the happiest in my life.
Before my diagnosis, when I considered how I might die, Alzheimer’s was the only one that terrified me. I wasn’t afraid of death, I could deal with pain, but please don’t take my mind away! Don’t let my grandchildren remember me as a doddering old man who doesn’t recognize them!
But within an hour of my diagnosis, my fear was gone and I’d become curious, “Well, this is going to be interesting. What this going to be like?” I can’t explain that transformation; it feels like pure grace.
I’m not in denial about what’s coming; I’m a physician and I know it well: doing very embarrassing things in public, not recognizing my family, gradually dying in a nursing home bed. But there are gifts from this disease, too.
The greatest gift so far is greater emotional openness. To most other people, I was a pleasant, helpful guy but approximately as emotional as a stone—“intimidating” was the word one friend later used. From the inside I was mildly depressed much of the time. That’s changed. No, I’m not a happy-go-lucky extrovert, but others have noticed my openness and feel closer to me. I’m certainly happier; I even weep sometimes … mostly for joy.
But perhaps the greater gift is much deeper relationships with my family and small faith community. Several weeks ago, our community was on a silent retreat. One evening, I watched my wife Marja walk down the path through the woods. I was suddenly aware of a deep longing. She radiated an inner light. Lean and strong, she walked gracefully as if 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’d never felt in over fifty years of our relationship. In that moment I felt extraordinarily grateful that we belonged to one another.But 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 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.
Afterwards, I went outside into the dusk, feeling very alone. 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 … felt holy, actually.
My faith community has gathered around me in the most wonderful way. Without being paternalistic, people are patient when I can’t find a word or make an inconvenient mistake. We take turns preaching in our community. Since I came out to them several months ago, at least four preaches have mentioned me and my disease, not so much in sorrow but rather as an opportunity for us to move deeper into weakness, to faith, to more profound community. I’ve been part of this community for many years but never like this!
It’s early yet. I may know the medical details, but I have no idea, really, what’s coming. I am curious. And I face this uncertain future planted more deeply in family and community.
I’m not afraid.
David Hilfiker is a father, grandfather, ex-physician, writer and founder of Joseph’s House, a home and hospice for homeless people with AIDS and cancer. He blogs at www.davidhilfiker.blogspot.com.