A reporter and photographer visited yesterday. They are considering a substantial article in a local paper about my Alzheimer’s, with the possibility of following me through the remaining years of my disease. Several years ago they spent a lot of time at Joseph’s House, the home and hospice for homeless men and women that we founded twenty-three years ago. And, although I only vaguely remember our interactions, they wrote sensitively about the house in a long article accompanied by beautiful, grace-filled pictures. So I trust them not to take advantage of me. (For all the ways the media are savaged for breaking trust and writing sensationally, they’ve never treated me that way in almost thirty years of occasional interviews.)
They stayed for two hours. I must admit it was wonderful to be the center of attention, especially of two attractive, intelligent and gracious women. We enjoyed ourselves and I felt I got to know them well. In fact, I talked so freely and we laughed so much that I wondered if my volubility was indication of a growing loss of judgment. I do want to let as many people as possible know what it’s like to experience this disease. On the other hand, I don’t want to make a spectacle of myself.
I’ve had a lot of experience with public vulnerability. When I made a serious medical mistake over thirty years ago, I wrote about it in the best medical journal in the country. The article was then picked up by Harper’s magazine and became probably the single most important writing of my career, eventually helping to break the profession’s taboo against public discussion of our mistakes. (For a long time, in fact, I was primarily known within the medical community as “that doctor who made those mistakes.”) Another example is my referring frequently to my depression in my writing, speaking and teaching; it led many people to share with me their own experience with depression, grateful to hear the subject talked about publicly.
In both cases, people had cautioned me about the inappropriateness of my openness, but, in retrospect, that public vulnerability has been perhaps my most significant contribution to our society.
Truth be told, however, I’ve been enjoying myself and my interactions with people so much since my diagnosis in September that I’m not willing to let that question of inappropriateness spoil the fun. Being open is a good thing to do, and I don’t trust the naysayers.
And if my judgment does become so impaired that I can’t distinguish appropriate from inappropriate, then I trust my circle of friends and family to help me figure it out. So, at this point I don’t care. This has been too much fun!