Solid words from one of the worlds leading fantasy writers, self-professed Humanist and Atheist, Sir Terry Pratchett. Pratchett has spent many years of his life perfecting a deep and vast world known as the Discworld. A disc shaped world set upon four massive elephants that stand proudly upon the shell of the Great A’Tuin, a turtle that travels through the vastness of space in search of something, heading for an undisclosed destination.
Sir Terry has painted one of the most beautiful worlds imaginable, inhabited with various characters such as Rincewind the rather rubbish wizard, Twoflower the fearless and rather overly curious tourist and Hrun the barbarian among many others. He tackles a lot of different subject matter in his Discworld novels; death, birth, religion, gods, chess and octarine (the eighth colour, seen only by wizards).
It is amazing reading these books, you delve ever deeper into the words, letting them paint pictures in your head. Such a beautiful and amazing imagination. I look forward to reading more and more of these Discworld novels of which there are over twenty.
All of this aside, Sir Terry has of recent came into the public eye for a very different reason from being a famed author. He has very sadly been diagnosed with a rare form of Alzheimer’s disease, known as Posterior Cortical Atrophy (PCA). This affects the back sections of the brain, making them deteriorate and shrink in size. This particular type of Alzheimer’s affects the persons memory, writing, spelling and arithmetic, more than a hindrance to an established author. Pratchett, in his own words he described it as an “embuggerance”.
It was due to being diagnosed that Sir Terry ultimately began thinking about the future, the way in which he may ultimately have to change his life in order to accommodate his illness. Almost treating it as another being that he just has to get along with. It is rather strange writing this, because after reading a few of his books, he has created an amazing character, a character that is embodied in one word, a word that we must all face, Death. Death in his books, is humorous, gets on with his job, travelling the Disc and extracting the life from the living. He is one of the best characters in the series and after watching Sir Terry Pratchett in his two documentaries, I cant help but feel Death is somewhat based on himself.
The two documentaries he made were about his illness and the right to die. The first was titled Terry Pratchett: Living with Alzheimer’s. This two-part documentary shows what he has to go through in everyday life over the space of a year. We see his reading capabilities deteriorate whilst he reads from his latest book in a room full of eager fans. Starting off well, ploughing through the paragraphs but later after about half an hour of reading, he becomes more and more unable to decipher the words. Quite sad to see, but again, he crushes any sense of embarrassment with a humour and wit sharper than Deaths scythe.
He ventures around a hospice in America that accommodates fellow sufferers of the disease. His curious and inquisitive ways are so down to earth that it allows us to see the way in which a sufferer can live happily and comfortably in one of these homes with a very high quality of life. Again by doing this he shatters any disillusions we might have about these places, replacing the images of gloomy dark and grey corridors with very friendly staff and a social friendly atmosphere that anyone would be happy to stay in.
Joking and giggles aside, we are faced with a great white shark, lurking under the still, crystal clear water of the calm of the documentary. That shark being death. It is clear that ultimately this predator is what we will all face at some time and it is at the forefront of the programme but never really mentioned. For Sir Pratchett and many others, it will and has been an experience that will most likely be made a lot more stressful through his disease.
The second documentary tackles a subject he and many feel strongly about. Terry Pratchett: Choosing To Die is a harsh and brutally honest look at our right to die. Sir Terry takes us through the world of Euthanasia or as he would rather we all call it, Assisted Dying. I myself find the phrase assisted dying far more acceptable than euthanasia. For some reason, the word euthanasia sounds robotic, it has no feeling in it, no flesh on its bones. What we are dealing with are human beings, not numbers or subjects or patients. It is a sad programme and at one point very hard to watch, but Sir Pratchett does it so timidly and respectfully that you feel it is your duty to watch on and be educated first hand about this sensitive subject.
One gentleman he follows is Mr Peter Smedley. He has been suffering at this stage of the documentary for several years from motor neurone disease, Smedley takes the decision to go to Dignitas and be assisted to his death, preferring to die “when the going is good”. He tells Pratchett that he has seen what lies ahead, and does not want to get to that point. He invites Pratchett along to Dignitas and further more lets him sit in on the final part of his life; when he sits comfortably beside his wife and downs a vial of Barbiturate Nembutal. This lethal potion sends Mr Smedley into a deep sleep, then softly into death. It is a difficult scene to watch, but at the same time you feel proud and strong for Mr Smedley. He took his life in his hands and done with it what he wanted to, he beat the disease before it beat him. I should note that at present, the UK does not fund assisted dying.
The situations we see our loved ones get into at times is heart breaking. The government sees it a better way of life to let a person deteriorate for days or weeks or years, rather than let them take their own lives when they feel it necessary. This is important because when Alzheimer’s sets in full force, it can be that they are not of sound mind to make such a decision.
Who are we to stand in the way of someone who has been confined to a life of full body paralysis and tell them that they must continue this method of life until they eventually die. The key word there being, eventually. It is becoming more and more public that we really shouldn’t interfere in people lives. With the help of Sir Terry Pratchett and others, through documentaries and other media, we may find a way that can accommodate everyone and their individual views.
The “moral” of all of this, is that we are not given life as a gift from God, but are here from various genetic mutations and survivalist tactics, in short Evolution, Natural Selection and Adaptation. There is no link to an ethereal being nor a higher power to govern our lives. We are in complete control of our own lives, it is just a shame that the influence of others can rip this last right from our hands.
As a fan of his works, I personally hope he continues to write or at least dictate to a writer, and if you are a fan of fantasy and want some humour thrown in, start reading his books!
Please take time to watch the documentaries below:
Terry Pratchett: The Right To Die
Terry Pratchett: Living With Alzheimer’s
Written and researched by Keith Boe