Washington DC
Many of the responses to this blog and to my email to
friends and acquaintances have referred to my “courage” in making it all
public. I certainly don’t mind my
friends thinking me courageous, but my making things public is not an act of
courage. To call me courageous because I
acknowledge my actual physical and mental condition implies that there would be
reason to fear other people’s knowing.
Why is it courageous to invite my immediate and wider
community to share in my pain, to give them the opportunity to support and
comfort me and my wife Marja, to lessen their fear over and embarrassment over
the disease, to prepare themselves for a similar pain? Really, what’s to fear? Mockery?
Rejection? Abandonment? What?
Certainly people may reject me (although that’s not at
all my experience so far), but wouldn’t those people abandon me later, anyway,
when my symptoms became more obvious and there was more to fear or be
embarrassed about? And wouldn’t they be
even more likely to do so if they didn’t know that I knew I was impaired? Inviting people into my reality, it seems to
me, makes it considerably less likely
that they will ultimately abandon me.
And inviting them in now when
I’m still pretty competent at least gives them and me a chance to learn from
each other and become more comfortable with each other before my condition deteriorates.
Refusing the label of courageous is not false modesty
on my part. In fact the emails and
comments I’ve been getting since letting people know have been full of love,
admiration and respect, making my disease considerably easier to live
with. And, to tell the truth, I’m not
above reveling in all the good things people have said about me in their emails. It’s been a little like being able to listen
in on your own memorial service.
Before the diagnosis, my embarrassment over praise and
fear of appearing conceited would have made it difficult to accept their compliments. Now I say to myself: Yes, my life has been
good; I’ve accomplished important things; I’ve made the world a better
place. Making the diagnosis public is
much less courageous than it is confidence in what will give me the greatest
joy and satisfaction.
This is grace. Would that we all could accept compliments and praise gracefully, all our days, instead of feeling like we didn't deserve them or needed to deflect them for some silly reason.
ReplyDeleteThank you so much for writing and sharing your journey. My mother was diagnosed with "mild dementia" in January, though since a serious car accident 6.5 years ago, her judgment has been much diminished, in my view. She's more along the lines of the 'mean drunk' model than the 'happy drunk' as this progresses, and it is not easy to be around her.
I don't know about after her car accident, but certainly AD includes reduced inhibitions that can sometimes result in very unpleasant behavior. This is one of the reasons that Alzheimer's is oftem most difficult for the caregivers.
DeleteA number of people have commented that as the disease progresses, the person become nicer and more fun to be with. I hope that it happens for you.
David
My mother certainly became more pleasant as the disease progressed and cuter by the moment. I enjoyed my time with her.
ReplyDelete