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.
No comments:
Post a Comment
If you would like to be notified whenever someone comments on your comment, click on "Subscribe by Email" underneath your comment.