Richard Smith, a former editor of the British Medical Journal, recently wrote: “The long, slow death from dementia may be the most awful as you are slowly erased, but then again when death comes it may be just a light kiss” [1]. Before it takes your body, dementia, including Alzheimer’s disease, steals away your mind and your memories – the part of you that is you – until in the end death can only be a relief. In high-income countries, Alzheimer’s disease and other dementias are among the top 4 causes of death, accounting for 42 deaths per 100,000 people in 2012 [2]. While these numbers are still far from the number of deaths due to cardiovascular diseases, they are still substantially higher than for breast cancer (16 deaths per 100,000). Yet breast cancer has its own pink awareness ribbon (sharing it only with abdominal cancer), whereas Alzheimer’s disease is only one point on a long list for which the purple ribbon is supposed to raise awareness. To be honest, until I googled it, I did not even know that there was a ribbon to commemorate Alzheimer’s disease. In a way, Alzheimer’s disease is still the invisible disease: the monster under the bed that we pretend does not exist. Rarely do we hear about acquaintances or celebrities being diagnosed with Alzheimer’s disease or some other form of dementia and in most cases we never hear from them again until there is some notice of their death.
This is what made Terry Pratchett so remarkable. He did not disappear after his diagnosis, he did not hide away. No, Terry Pratchett did “not go gentle into that good night” [3]. Instead he “raged, raged” not only “against the dying of the light”, but against the public perception of Alzheimer’s disease and against the laws that would not allow him to choose the moment of his death himself. But mostly he wrote. Instead of writing just one or two more books after his diagnosis, as I had expected, he wrote or co-wrote eleven novels (if I counted correctly). He continued to write almost until the very end, using speech recognition software or dictating to his assistant, Rob Wilkins, when he could no longer type himself. In the words of my favorite poem [4], he filled “the unforgiving minute with sixty seconds’ worth of distance run”. He used what was left of his time to the fullest, doing what he loved most. In this way, he was blessed. Few of us are fortunate enough to find something we love doing so much that we will persevere with it even in the face of our impending death. I enjoy doing science and being a professor is the perfect job for me, but I would certainly not continue writing papers and analyzing biological data if I knew I was dying.
Although I do not want to enter the quagmire that is the discussion about what constitutes a good death, I will venture to say that Terry Pratchett was lucky to have been given his unforgiving minute: the time to prepare, to say goodbye and to focus on what matters most. In the most literal sense of the word: a deadline. Despite all the “carpe diems” and “YOLOs” and “live every day like it could be your last”, we rarely do. “In a universe so full of wonders”, we “have managed to invent boredom” [5] – or rather routine. Bills have to be paid, mouths have to be fed and “life is what happens to you while you are busy” doing other things [6]. Maybe this is the only way we can bear the finiteness of life and, in a very practical way, living each day like the last can make a lot of problems. I certainly would be broke, clinically obese and living in a squalid mess if I just did what I wanted to do most at each moment. So instead of living each day like the last, we procrastinate like there are a million other days. “After all, tomorrow is another day!” [7].
But eventually time will run out for all of us and often enough we are ill prepared for this. In Terry Pratchett’s books, witches know the time and date of their death, allowing them to get ready for their death and settle their affairs – and sometimes have their funeral party before their death (I would so love doing that). In our world, the knowledge that the last unforgiving minute has now begun usually comes at a price, i.e. illness and pain. Thus, most people would rather go quickly to avoid the unpleasantness of a long and protracted death. But here I agree with Richard Smith “that [this] may be OK for you, but it may be very tough on those around you, particularly if you leave an important relationship wounded and unhealed.” For those left behind, the opportunity to say good-bye, to resolve existing differences, and to use the remaining time as much as possible is invaluable. Too often, loved ones are taken from us suddenly without warning, be it by an accident, a heart attack, or some other sudden death, leaving us not only with grief but also with regret at not having used the time we had.
Recently, I came to appreciate the blessing of having that warning, that unforgiving minute, when losing a loved one. My cat, Jasmin, was diagnosed with terminal cancer in March 2015 and the vet gave her at most three months to live. If you read my story in the book, you will recognize that name. Inspired by all the GNU Terry Pratchett activities, I put her into my story so a part of her would live on forever. In the end, she lived for more than seven months after the diagnosis, hanging on much longer than anyone thought. But eventually death could no longer be denied. On a sunny November day two weeks ago, she went for a walk into the woodlands behind my parents’ house and never came back. We only found her body a day later, after some scavenger had found her first. Even though it was not a pleasant sight, it was still a poetic way to go for her, passing away in her old hunting grounds. And we had the months before her death to prepare for her passing, to spend as much time as possible with her, to make more memories and take pictures and videos to remember her by. I am grateful for this last unforgiving minute, for the chance to prepare for her death and to say goodbye. Even though I did not get to say it right before her end, I did say it often enough in those seven months. There are no regrets now, no “what ifs” or “if only’s”. And while I am not ready yet to let her go completely, I also know I don’t have to. As Terry Pratchett wrote: “A man is not dead while his name is still spoken”[8] (or in this case a cat). While we remember the ones we lost, they stay alive in our hearts and memories. They live on in the stories we tell and – in Terry Pratchett’s case – in the stories they told.
References (old habits die hard):
[1] http://blogs.bmj.com/bmj/2014/12/31/richard-smith-dying-of-cancer-is-the-best-death/
[2] WHO fact sheets. http://www.who.int/mediacentre/factsheets/fs310/en/index1.html
[3] “Do not go gentle into that good night”. Poem by Dylan Thomas. Full text at: https://www.poets.org/poetsorg/poem/do-not-go-gentle-good-night.
[4] “If”. Poem by Rudyard Kipling. Full text at: http://www.poetryfoundation.org/poem/175772
[5] Terry Pratchett, Hogfather.
[6] “Life is what happens to you while you are busy making other plans”. John Lennon.
[7] Margaret Mitchell, Gone with the Wind.
[8] Terry Pratchett, Going Postal.
