Yesterday BBC One broadcast the 34th annual Richard Dimbleby Lecture. I had never watched it before, but it caught my attention this time because Sir Terry Pratchett was to give a lecture called “Shaking Hands With Death”.
Terry Pratchett, as you will now if you have seen my rantings on his novels, is the writer of the bestselling series Discworld (http://www.terrypratchettbooks.com/). In 2007 he publically shared that he was diagnosed with a rare form of Alzheimer’s disease called Posterior cortical atrophy (or Benson’s syndrome), which is a visual variant of Alzheimer’s. It causes shrinkage of the back part of the brain and progressively disrupts complex visual processing. E.g. having difficulties buttoning up a shirt, forgetting where to have put your keys (while having them in front of you), seeing a cup of tea on the table but the brain not registering it is there – and then suddenly the tea-cup pops up like magic in his sight.
I had seen the documentary he had made with BBC Two, called “Living with Alzheimer”, where he shared how he has to battle the disease daily and how it creeps up in subtle ways. He explored how medical science is working on battling the disease, met up with other patients and visited American nursing homes with last stage patients.
In his Dimbleby Lecture, “Shaking Hands With Death”, he give his personal view on how our society deals with death; on how, say, in Victorian times assisted dying seemed more the practice to have people go in dignity. Pratchett wasn’t there to advocate assisted dying for all, but stood up for his own, private right to choose how he wants to spend his end of life, because Alzheimer’s disease is not a curable one. It is an ongoing, deteriorating illness, which results in many having a far lesser quality of life. In his lecture he spoke up about his right to be free to choose how he wants to go; with dignity and having something remaining of the Terry Pratchett he is. Not a shadow of his former self.
Pratchett opened the lecture with a small introduction. Because of his variant of Alzheimer’s, he was not able to give the lecture himself, seeing visual processing gets interrupted. So it was Tony Robinson (a great actor and I am saddened to only refer to his part as Baldric in Blackadder, though I believe he has played greater parts than that), who took over and gave the lecture Pratchett had written. Robinson confused me at first, seeing the lecture was given in the I-person. The “I” ofcourse being Terry Pratchett.
If you know Pratchett’s Discworld novels, you will get that the title of the lecture also refers to one of the main characters, Death. (I must say, that of all the novels, the ones where Death has a part are the best ones). On this, Pratchett said that as a kid, he had seen the figure of Death on film, a black-robed figure with a scythe, playing chess. This was in Bergman’s “Seventh Seal” (1957). That image has always stuck with him and is how he personified Death.
Very openly he talked about how he had been there in the last stages of his father’s illness. He suffered from pancreatic cancer. His father had asked him to stop the machines if he were to end up in a bed, all tubes and lifeless. Pratchett said that he couldn’t do it then; neither legally or emotionally.
To him, there is a difference between assisted death and assisted suicide. In his early career as a journalist he had witnessed many coroners’ hearings which depicted suicides and death in ways that was not published in the newspapers back then. Suicide is also a delicate matter to go into. Considering assisted death is not something taken lightly. Pratchett said that he discussed this issue many times and his family knows what his wishes are when it comes to that. But the issue is in society is to redefine how modern society deals with death. To debate the patient’s desire to die with dignity and preserving the essence of one’s self.
I took a great deal of interest in this lecture, not only because it was Pratchett. Though a tough subject, and a personal one, to talk about, Pratchett did it in his own witty and light way as we know him from his novels.
My grandparents were a shadow of their former selves as well, I believe. I’ve known them when they were already very old. My grandfather had Parkinson’s disease and never got out of his chair. He trembled all day, was frail like porcelain and was incomprehensible when he spoke. As a kid, I could only make out sounds. My mom seemed to be the only one to understand him. Even then, I guess she assumed what he wanted, not actually understood his words. My grandmother had severe dementia. Some days she thought I was her sister, on others she had no clue who I was. What was painful was at the end stages, when she thought my father was a stranger, not recognizing her own son. She persisted she had 3 daughters, but my father was an only child.
I heard stories from my parents and siblings on how my grandparents were before their illnesses. And I cannot relate the stories to the 2 people I had known. This is a frightening realization.
My father has been diagnosed, about a decade ago, with Parkinson’s as well. It is not a genetic disease, but it has become a more frequent losing-lottery-ticket for many these past few years. He has changed a lot in past years. The spooky thing is that due to my grandfather, we know somewhat what is to come. Maybe that is why my mother is handling it not so well. She had cared for my grandfather in the 15 years of his illness. She is going through this again and is trying to make my father fight a bit more to battle the disease. Not easy. Most days, my father seems to give up, feeling he is useless and unable to do simple things, trembling all day and losing control over his locomotion.
Altzheimer’s and Parkinson are different diseases. Both are incurable though and the last stages are very hard on the person and the family. And I do agree with Pratchett, that if you do not live it, you have no idea how it is to live it; to be able to keep dignity and a quality of life. And I do wonder sometimes what it will be for my father, as his illness progresses. Growing up, I had a very difficult relationship with him. And it would be hypocrite to say that since his illness all is well between us. I wouldn’t go that far. But what I have noticed in the past few years (the last 2 mainly), is how he has influenced me a lot. How the person that I am now, has a lot to do with what he has given me to build me as a person.
And though it frightens me to think of death, I do think about it. And this lecture has made me think about it a bit differently, seeing it from Pratchett’s perspective. And I thank him for having shared it.