With a mild optimism

“It is said that your life flashes before your eyes just before you die. That is true, it’s called Life.”
― Terry Pratchett, The Last Continent

I recently received a signed copy of Snuff by Terry Pratchett.  It’s his latest book, and I had pre-ordered it before it was released.  I guess that isn’t a very big deal these days because it’s easy to get a signed book from an author if you want one.  I have a modest collection of signed books.  I don’t collect them intentionally, but if one is available from someone who I enjoy as a writer I pick it up.  This book is special to me not because it is signed, but the circumstances under which it was signed.

Terry Pratchett  is on a short list of authors who have made me laugh out loud while reading one of his books.   As I do a great deal of reading while taking public transportation, this has sometimes lead to looking about the train car awkwardly while everyone else studiously avoids eye contact with me.  As everyone knows, people who laugh to themselves on trains are most likely teetering on the brink of insanity, and any eye contact could send them over the edge.  He has written quite a number of books which are described as fantasy satire.  While they are most definitely set in a fantastic world, the subjects normally are thinly (and not so thinly) veiled commentary on our world and society. His books have been made into TV shows, plays and games. Mr. Pratchett is more accurately call Sir Terry Pratchett as he was knighted in 2009.  He even made his own sword using iron ore that he had dug himself.  He also likes cats and amateur astronomy.  All of these things give you major points in my book even if Sir Terry were not already one of my favorite authors.

In December of 2007 Sir Terry announced that he had been diagnosed with a rare form of Alzeimer’s disease called posterior cortical atrophy.  He describes it in the 2010 Richard Dimblby lecture: Shaking Hands with Death:

PCA manifests itself through sight problems, and difficulty with topological tasks, such as buttoning up a shirt. I have the opposite of a superpower; sometimes I cannot see what is there. I see the teacup with my eyes, but my brain refuses to send me the teacup message. It’s very Zen. First, there is no teacup and then, because I know there is a teacup, the teacup will appear the next time I look. I have little work-arounds to deal with this sort of thing – people with PCA live in a world of work-arounds.

So as you can see, this disease is slowly destroying his ability to interact with the world around him, and to do something he loves and has done for most of his life. No one deserves to have this happen to them, but when it happens to someone who has given so much to the world it is particularly tragic I think.

There are a lot of things that can kill you in this life: war, disease, poison, accidents, the random malfunctioning of a organ, or just the accumulation of time.  During my life I have witnessed most of these at work.  Nothing frightens me more than Alzheimer’s. Anyone who knows me knows that I spend a great deal of time (possibly TOO much time) in my own head.  Reading, thinking and communicating are some of the chief things that I enjoy.  To have that slowly eroded away until you don’t recognize yourself or any of the people around you makes my blood run cold. I’m sure that I’m not alone in that. I had already been a fan of Sir Terry’s writing for a number of years when he made the announcement. I can remember thinking it was awful, Sir Terry on the other hand said “we are taking it fairly philosophically down here and possibly with a mild optimism.” He followed this by encouraging people to donate to Alzheimer’s research and by donating a large amount himself. He also began to address the issue of assisted death.  He spoke at the Dimblby lecture above, with the press and appeared in a number of other programs on the topic.

As I was waiting for my signed book to be shipped from the UK I watched a special called Terry Pratchett: Choosing to Die.  In it, Sir Terry talks to two people who are suffering from incurable illnesses who are choosing to die at a facility in Switzerland called Dignitas, as well as one man who has chosen to enter hospice. While he was talking to the man in hospice he asked him “Do you have a lot of happy memories?” the man answered “Ah, I have a million happy memories.” Sir Terry replied “I don’t. They’re disappearing at reasonable rate.” At which point I had to stop the video. While he stated it in a typically understated British manner, the statement nailed me.  Even now he is losing memories from his life. I can not imagine what that’s like.

Sir Terry has come out with several books since his diagnosis, and is keeping a schedule of appearances and interviews. My guess would be that most people in his circumstances would just be happy to continue to work as long as they could, but no longer sign books or do appearances. Certainly people would understand if he did. I don’t know how many copies of Snuff he signed, but I do know that my book is one among hundreds. However, the fact that he did take the time and effort to sign this book that I now have is to me to a distinct act of courage and defiance — and that makes it special. I hope that if I am ever in the position that Sir Terry finds himself that I would be able to face it with the same courage, humor and compassion that he is now.

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