Many of the responses to this blog and to my emails with friends and acquaintances have referred to my “courage” in making my struggle with cognitive decline 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 of and embarrassment over the disease, to prepare themselves for the possibility of experiencing a similar pain? Really, what is there to fear? Mockery? Rejection? Abandonment?
Certainly people may reject me (although that has not at all been my experience so far), but wouldn’t those people abandon me later on, anyway, when my symptoms become more obvious and there is more to fear or increased possibility of embarrassment? And wouldn’t they be even more likely to react in this manner if they did not know that I was aware of my impairment? Inviting people into my reality, it seems to me, makes it considerably less likely that they will ultimately abandon me and my family. And inviting them in now, when I’m still pretty competent, at least gives us a chance to learn from one another 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 sharing this news 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 has 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 these compliments. Now I say to myself, “Yes, my life has been good; I have accomplished important things; I have made the world a better place.” Making my situation public is much less courageous than it is confidence in what will give me the greatest joy and satisfaction.