FORGET MEMORY BLOG

I picked up the book at Kramer’s (another favorite independent bookstore) in D.C. when I was there for the American Society on Aging in March. I started reading in a cramped Thai restaurant (sipping my favorite soup) and finished on the plane to Florida a week later. But the characters are so inviting (quirky as they are) and the story so playful (even if the topic is edged with sorrow), that it felt like I read it in one sitting. I was immersed in Block’s world.

There are autobiographies by people with early-onset, and many, many memoirs by caregivers. Some among these are very important – they let us know the hearts and minds of people going through the disease, and they chart out the experience of it in detail much greater than the medical diagnosis (which was really all we had for a long time).

Fiction, especially good fiction, about this experience can do something a little different – which is transform the experience of dementia/Alzheimer’s.

In the Story of Forgetting, which was featured on Weekend Edition on NPR over the weekend, Block does this beautifully. He wrestles with the core questions. Why would parents who know there is a chance of giving this to a child, have children? Why does this exist? Does it have any meaning at all? I can’t say that there are clear cut answers to these questions in the book – but there is a consistent, underlying dignity in all the characters, from the women who became carriers of the disease (in Block’s telling), to the ancient man with humpback who struggles to stay in his house so that it might be there for his wandering daughter to return to, to the young man who inherits not just the likelihood of disease, but the 1,000 pound, existential questions that come with his mother’s diagnosis and his father’s depression. There is love, goodness, and even whimsy in the darkest moments in Block’s world(s) – and that more than answered the Why for me.

My new motto for the field is that we need to raise awareness without raising stigma. And this tender rendering does just that. It is PACKED with science and realistic portrayals of the experience. And hope for meaningful connection in the moment.

I’m told by Don Moyer of Still Alice, another fictionalized portrait of early on-set – and I’ve ordered it and look forward to sharing it here with you soon.