I called my oldest daughter Laurel to tell her of the diagnosis. The original plan had been to break her in easily by talking only about my “concern” about cognitive impairment, but I knew that once we began talking I would not be able to stop with “concern.” So I briefly told her the history and the diagnosis. She took it all in clinically like most other people have: questions, expressions of sympathy, etc. A stiff upper lip. Then I asked her what she was feeling, and she couldn’t hold back her tears and sadness. She described me as the “rock of the family” and told me how much she loved me, how much I meant to her. It was good for me that she expressed the sadness with real tears; it gave me a little entry into feeling the sadness myself. In fact I haven’t thought much about “sadness” as one of my reactions until she named hers.
But as we talked, I gradually became aware, once again, that this disease is not only about me, not even primarily about me. The impact will be felt in widening circles. The people whom it will most affect, who will suffer the most are those who love me the most. They will have to watch the gradual diminishment; they will have to deal with me as I become less and less able to deal with myself. They will have to make those difficult decisions about “what to do with dad.” It will be, I suspect, be worse for them. This is not about me.
In our family we don’t tell each other very often how much we love one another, how much we mean to one another. I have never wanted to die suddenly and rob us of the chance to say those things. Now there will be a prolonged period of time, long goodbyes. I hope we can take advantage of the time.
Marja was in the room while Laurel and I talked and she recognized the depth and sadness of Laurel’s reaction. So, after the call, she wanted to talk a little about the fact of her own non-emotional reaction so far. The diagnosis doesn’t seem to bother her as much as surprise and confuse her. But we just talked personally—for the first time, I think—about what this will mean for us. Marja also talked about how good our lives have been, how much grace we’ve been given. My disease doesn’t really count as “tragedy.”All of us get old, we get sick, and we die. Certainly I hoped that my terminal illness would develop a little later in life, but I will leave no unfinished business. Already the disease has had its positive sides. I don’t know what’s coming, of course. But Marja and I can easily say that, so far, our lives have been charmed; we would trade with no one.
Someone just phoned and asked if I could come to their school and speak to them. I don’t even remember who called or from which school. But I turned it down because I wasn’t sure I could do it and because it would be too painful to try. It’s a marker: a first practical decision to recognize this illness and take it into account.