“I hope you’ll still laugh at my jokes when I have dementia,” I said to my husband Ryan on an evening walk not long after my thirty-fourth birthday. It was the first time I had tried out my new resolution to stop saying “if I get dementia” and to start referring to the time “when I have dementia.” I felt the catch in my throat, a node of reluctance, but I was committed now. I had heard of this turn of phrase from a fifty-something nursing home administrator who said she uses “when I have dementia” to reflect a calculation of her odds, given her particular family history and the fact that mental decline is probable as we age. I appreciate her tough-minded devotion to naming her probabilities. All of my dad’s dad’s siblings died with Alzheimer’s, except the one who was killed in North Africa during WWII.
My syntactical conversion from if to when reflects not only my statistical realities but also my devotion to closing the psychological distance between those who have dementia now (“them”) and those who do not have dementia yet (“us”). It reflects a larger life project to embrace persons who have dementia, to deconstruct negative and stigmatizing attitudes toward brain disease, and to construct a more excellent way through dementia’s snares. It reminds me that dementia is the story I am inside, now. Dementia is not my future disease; it is my present healing.