Interview with journalist and writer Henk Blanken
It is a good story, however, thinks journalist and writer Henk Blanken when he hears that he has Parkinson’s disease. That is why he decided to write a book about his illness, dementia, life and death. His latest book is titled You Won’t Die. Health Net spoke to him about this. With his book he has a clear mission: to change the current euthanasia law for people with dementia.
You were told seven years ago that you have Parkinson’s disease. How do you deal with your illness?
“I think I’m lucky that I and my disease are still not that bad – the severity of it or the speed at which it develops. Parkinson’s, as you know, is progressive and incurable. I’ve had it for seven years now and it’s still falling That is, I can no longer work, I am in pain every day and I have my limitations – I can no longer drive, I have trouble walking up and down stairs – but I am lucky enough to be able to write And I do that with more pleasure and better than ever. That makes up for a lot. It helps to keep it a bit bearable.”
What has the diagnosis done to you as a person?
“As a journalist, the first thirty or forty years of my professional existence, I was quite a cock. I worked eighty hours a week, just standard because I liked it. I was not always a very pleasant person to my environment, also not for my family, and I think that has changed because of my illness. I hear that a lot from people too. I have become a bit softer and nicer. And I am a bit more aware of what is happening in my life.”
How do you see the future?
“Honestly, I don’t think about that much. On the other hand, I also think about it a lot. When it comes to me personally, I live by the day and enjoy every day and of course I know that it is really goes wrong between now and five to ten years. It’s pretty much certain that I’ll eventually become an invalid, end up in a wheelchair. And the final stage of Parkinson’s isn’t a big party either. It doesn’t have to be, but personally I don’t think much about it.
What I do with writing is something completely different. As a writer, as a journalist, I have always delved deeply into the problem of dementia and euthanasia. I know that a Parkinson’s patient has a significantly greater chance of developing dementia. Because I have it myself, I can more easily relate to the fate of those ten thousand people who die of dementia, or at least die with dementia, every year than many other people. The debate about dementia and euthanasia in the Netherlands is conducted by doctors, nurses, politicians, scientists, lawyers, ethicists, but not by the people themselves. People with advanced dementia have no opinion. I try to put myself in their position a bit and I can do that more easily. And I have worked on that for years, I have been working on that subject day in, day out.”
How do you see the suffering?
“Of course I’ve been sick for seven years, actually eight years, because I was sick before I knew I was sick. It’s what happens to me, I can’t help it. I’m not to blame, it’s not coming by drinking too much, working too much. I have to deal with it. And on good days I think there is also a nice side to it, because it makes you a different person. It makes you enjoy the things around Of course that’s not to say I’d much rather have been healthy, of course I’d rather have been healthy, but I try to deal with it in a friendly way, like dealing with a good friend who is also very critical at the same time. tells you the truth, he sometimes scolds you rotten, but he remains a good friend precisely because he always tells the truth.”
Are you afraid of death?
“No, not at all. Death is not bad for me. I understand that people can be afraid of that, that’s not the point. When I’m dead, then I don’t suffer from it myself, only the people left behind. There have been philosophers who have said that death is a problem of the living and I believe so.
I’m not afraid to be dead, then I don’t experience anything anymore. So I wouldn’t know what to be afraid of. I’m not that afraid of dying either, because we have arranged that properly in the Netherlands. Doctors and hospitals know how to ease the suffering and palliative care goes a long way. So I’m not too concerned about that. It’s more life before death that I’m afraid of.”
What is You Won’t Die for a Book?
“It’s a personal book, it’s about me and my life. So not just about Parkinson’s and dementia. It’s about me and my life and my search for the limits of my decline. Other people say it almost reads like it’s a It’s a novel, so it’s a continuous story, not a self-help book. It’s not a book you have to read if you want to know what can get in the way of Parkinson’s.
The book is the story of a man who gets sick and thinks a lot about his life and himself. And how Parkinson’s has changed my life, constantly in the background the question of what I will do if I also get dementia. How will it end then?”
As a Parkinson’s patient you run a greater risk of developing dementia. What role does dementia play in your book?
“A very big one. It is the common thread of the book. If, like me, after a few months or a year after you have Parkinson’s, you are also told that there is a very good chance that you will die terribly demented And you want to get out for that moment, but then discover that it’s just not possible. That it’s impossible. And then you start writing about it. So it’s really the common thread of the book.
If you have had Parkinson’s for seven years, the threat of dementia becomes more and more real. Not that I’m already bothered, but it’s getting closer. There is no other way.”
You describe that you are looking for the limits of your decline. What does this quest look like?
“What I do in the book is constantly comparing myself, mirroring myself to people I meet. Who I meet as a journalist, whom I encounter as a patient. And whom I encounter as a researcher when it comes to dementia. I have a lot in those people. looked up, I have made very good friends and that is the search.
And then the question naturally arises: how much decline is bearable? On the one hand you have the dementia that is always lurking and that I also had to deal with with my father and father-in-law. That was very close. And at the same time, the possible outcome of Parkinson’s is not a big party either. Last year I spent some time in a clinic and saw people with advanced Parkinson’s, who couldn’t do anything anymore: could no longer talk, walk, eat, drink, but were still fully aware of who they were. And then the question is which is worse.”
What makes this book typical of Henk Blanken?
“I’m a huge literature lover. I’ve always read a lot of poetry, always written. I think people who like to write and read, who like novels and literature will see that it is a literary book. That is Henk Blanken, because I wanted to make that. I wanted to make a novel that is true after all.”
What message do you want to pass on to your readers?
“It is the case in the Netherlands that according to the law you can sign an advance directive stating that you want to die, that you want euthanasia if you are demented. 40 percent of the Dutch think that a doctor must adhere to that directive. That is not the case. So, doctors don’t let people die who don’t know what dying is. Of those ten thousand people who die every year from dementia, about half have had an advance directive. But only one in a hundred manages to die before they really And those people also have to do that much too early, they already die in the first stage of dementia, thanks to euthanasia.
The message of the book should be that the law is being changed. It’s that simple. The current euthanasia law, when it comes to dementia, is a farce. It’s a pacifier, it’s not what we all think it is. If you sign an advance directive while you are still clear stating that if you really do become demented, then you want euthanasia, then the current law says that a doctor can do that, but doctors don’t. And because doctors are the only people allowed to perform euthanasia, it doesn’t happen, except for the one percent where it works. But they go much too early, while I don’t want to die too early, but I want to die in time. And that means that if I have dementia, someone other than a doctor should have the right to have my euthanasia at my disposal. And that requires a change in the law.”
Who is your book of interest to?
“For people who think about decline or decay, about the end of life, living with Parkinson’s, how you deal with that, how you try to stay optimistic. And who also like a well-written story, because as I just said, it is not a self-help book.”
Henk Blanken (1959) prescribes de Volkskrant and The Correspondent on euthanasia in dementia. His work has been awarded with Het Gouden Penetje, the Tegel and the European Prize for health journalism.
