On Alzheimer’s Disease

Terry Pratchett, author of the Discworld series, released a public statement over the weekend. He’s been diagnosed with Early Onset Alzheimer’s Disease:

I would have liked to keep this one quiet for a little while, but because of upcoming conventions and of course the need to keep my publishers informed, it seems to me unfair to withhold the news. I have been diagnosed with a very rare form of early
onset Alzheimer’s, which lay behind this year’s phantom “stroke”.

We are taking it fairly philosophically down here and possibly with a mild optimism. For now work is continuing on the completion of Nation and the basic notes are already being laid down for Unseen Academicals. All other things being equal, I expect to meet most current and, as far as possible, future commitments but will discuss things with the various organisers. Frankly, I would prefer it if people kept things cheerful, because I think there’s time for at least a few more books yet :o)

I read this yesterday, and I rolled it around my mind. I had… mixed thoughts.

The most obvious thought is this: I’ve not read as much of Pratchett’s work as I should have. My discovery of Pratchett was with the Colour of Magic adaptation Innovation Comics did back in ’91. As the years passed I read a couple of the novels. I even have the first Discworld PlayStation game. (And in my seven years with EB Games I saw the second once, but that disc was so damaged it wouldn’t have played, and it didn’t have a box.) I’ve given Pratchett’s work as gifts on multiple occasions. I’m thinking I should probably read more.

The other thought I had was more philosophical.

I think that at some point every human comes to the realization that they are mortal, and that the time they have to accomplish the things in their lives is finite. As I sometimes joke, the only certainty in life is death. In my morbid moments, I might phrase it, “Life is a hundred percent fatal.” Gallows humor, certainly, but a dry humor all the same.

I cannot imagine losing my mind, with the keys to my memories and personality, the keys to all the things inside my mind that make me me, and living on. The thought of losing a sense of place and time, to be unaware of the orderly progression of things — those things terrify me. To be trapped in a body that could go on for years, but without the mind to comprehend, to enjoy the passage of time, to create and to think. To not be able to carry a simple conversation, to no longer understanding that day follows night, that winter follows autumn.

I, sitting here, pondering the thought of losing one’s sense of self to Alzheimer’s am utterly terrified. Yet I imagine that, as terrifyied as I do feel, Pratchett must be feeling the same terrors multiplied a dozen times, a hundred times.

I’ve sometimes wondered how I would react, were I to learn that Alzheimer’s would take my mind. I’d like to think I’d recognize when I’d reached the point where my ability to function had degraded far enough that living on would hold no meaning. My fear is that I would never recognize that.

Research into Alzheimer’s is ongoing. Fifty-eight seems far too young for anyone to be diagnosed with the disease. I feel for Pratchett, and I hope that his mental acuity doesn’t degrade appreciably for a number of years. I also feel for those who will help to care for him when his mental acuity does degrade, because it will be a terrible emotional burden they’ll carry.

Stay healthy, Terry Pratchett. Stay sharp.

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