Posterior cortical atrophy. Have you ever heard of it? I hadn't. It is so rare that even Wikipedia doesn't have an entry on it. Imagine a disease with all of the horror of Alzheimer's, except that it strikes people younger, progresses faster, and blinds the victim as well as robbing her of memory. This is what my aunt (and uncle and cousins, by extension) have been battling for over 1o years now. It is a terrible, tragic disease, and essentially caused her death last week-- decades before her time. The last five days have been a chaotic blur, getting shifts covered at work, making last-minute flight plans, driving to D.C. to fly to Michigan, getting back to D.C. late last night to drive back home. To be honest, I'm so tired I'm not sure this post even makes sense.


The last time I was in Michigan was for my grandmother's funeral last year; this trip had a very unsettling feel of deja vu to it. Same limos, same funeral chapel, same elderly relatives chanting indecipherable Hebrew at the Shiva. But there is such a difference between the funeral for someone who died at 95 after a long, healthy life, and someone who dies at 66 from a degenerative illness; there is a sense of tragedy to the second that the first doesn't have. When a beloved someone dies at 95 we mourn--more for ourselves than anything because we'll miss her-- but there is not that sense of what-might-have-been, or what-should-have-been, because really that's about as good as it gets. To live to old age with all your faculties and independence intact; to retain your memory and drivers' license, your apartment, vision and hearing, family and friends-- isn't that the best any of us can hope for? None of that can be said about my aunt; to mourn her is to mourn all of the years that should have been, and to mourn the last several years in which her quality of life was so poor, her memory dying. It's hard to think about the hole left by her; not so much for me (although it's there, of course) as for my uncle, my cousins, my father. It is impossible to describe how close and loving my aunt and uncle were in their marriage, or how devoted he was to her both before and after her diagnosis-- joined at the hip. It's so painful to witness his devastation.


I cannot adequately write a tribute to my aunt about what a wonderful, loving woman she was, or list her many talents and accomplishments, and it has already been said by others who know even better. But I was thinking about it the evening before the funeral. What happens is this: the rabbi comes over and sits down with the immediate family and asks us about our relative so that he can fully understand who she was in order to create a meaningful eulogy. So for maybe two hours we all sit in the living room, sharing memories and stories, explaining things about her to the rabbi. I just listened, because my memories from childhood were too vague to express well and it was fascinating to hear so much I never knew about her. It is a real legacy to leave behind a family that is so close. 3 grown children who live far-flung lives-- Detroit, Chicago, San Francisco-- but call their father every day just to chat, who are close to each other, who are in committed relationships themselves, whose partners form seamless additions to the clan-- for a woman who put family before everything else, this speaks the loudest about who she was. She will be so, so missed.