'Watching the Lights Go Out'

By James Fallows

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In school many students have been exposed to Daniel Keyes's book Flowers for Algernon. It came out in 1966, when the author was in his late 30s; it has sold millions of copies and remains in print; and Keyes himself is still active in his mid 80s.


The narrative concept of the Algernon book, and of the Cliff Robertson movie Charly based on it, is to present the self-chronicles of a mentally disabled man, Charlie Gordon, as he is artificially raised to super-intelligent status -- and then goes back down again. The power of the book comes from the changing tone and sophistication of Charlie's observations as he is rising in intelligence, and more poignantly his awareness of what is happening to him as he declines.

I don't want to make too much of the comparison, but I couldn't help thinking of Algernon when, thanks to a tip by David Grann, I came across David Hilfiker's account of his own ongoing experience with Alzheimer's disease. Hilfiker's back story is of course completely different: he was an outstanding student at Yale who went on to become a doctor. He has spent most of his career in poor rural and big-city communities and has written books on questions of personal and social justice. For instance, his Healing the Wounds was about the ethical complications of working as a doctor. That's a picture of him at the top of this item, from the Joseph's House organization for sick and dying homeless people where he has worked in Washington.

Hilfiker is 68, and he was diagnosed a few years ago with "progressive cognitive impairment" in the form of Alzheimer's disease. He has been carefully chronicling the things he can do, and remember, as he notices the things he can't. He gives the big picture in a brief autobiographical essay called "Watching the Lights Go Out," and he has been providing ongoing diaries the most recent of which are here. These self-examinations are exceptionally brave, honest, and clearly written. Among their most striking parts is Hilfiker's confronting the certainty of the unintended ways in which he will reveal his impairments, and his awareness that as a person who had largely defined himself through his intelligence, including his ability to write, he will watch those things go away. An example of his sensibility:
>>Garrison Keillor said recently, "Nothing bad ever happens to writers; it's all material."  So, at least for a time, this Alzheimer's disease will become material for my website and for a blog.  I want to write about what Alzheimer's is like from the inside.  What is the experience of losing one's mind?  Do I still experience myself as the same "self"?  Obviously, I don't know how long I can do this, although my good friend Carol Marsh has volunteered to keep it going with interviews when I can no longer write.  We'll have to see.<<
Hilfiker deserves great respect and careful attention for the memento mori he is creating.

This article available online at:

http://www.theatlantic.com/health/archive/2013/04/watching-the-lights-go-out/274577/