Many years ago, as a young undergrad, I ambushed Oliver Sacks right after he finished addressing a Music Therapy conference. I asked if I could run an idea by him, he said we could talk while he walked to his car. I explained my hypothesis of a potential cause of neurodegenerative diseases. He listened patiently then said "I have similar thoughts, the challenge is proving it". Then, just before stepping into his car, he said "If you are right, and can prove it, you would win the Nobel Prize. Good luck, young man." I doubt he remembers this conversation, but for me it was an amazing experience I will never forget. The lab I worked in wasn't equipped to study the idea, and I became the lab computer guy instead of a neuroscientist. But I am still grateful to the confidence given me in that short conversation.
Anyone who is even remotely interested in end of life issues, and anyone who is a physician, should really read Atul Gawandes Being Mortal. Many people are unable to live their lives out the way Dr Sacks hopes to, simply because the medical establishment as is doesn't really allow for it.
The best takeaway from this essay is that, in the end, you have to focus entirely on things that matter to you most. But you should also be clear on this with your treating providers - so at the end you are spending time with your loved ones, and not going in and out of the hospital.
Having not read the book and the viewpoint it presents I do feel like there's also a bit of responsibility - I hesitate to use "blame" or "fault" - on the patient or patient's family for keeping them alive on machines and treatment that cost way too much. Perhaps the establishment is an enabler in that sense but what would they be if they didn't respect the wishes of the dying?
> because the medical establishment as is doesn't really allow for it.
I have many relatives and friends in medicine. They will let you end your life the way you want to (for the most part) but you have to be firm about what you want. Doctors don't like telling people they're dying because it is a hard conversation to have. And most people, even those who are aware of the statistics, like to cling to the hope that they could be different.
I just finished this book a couple weeks ago. It was definitely a great one. Although, a difficult book to read, purely from the perspective of the topic. Growing old and/or dying are both topics people tend to ignore.
I also hadn't fully grasped the condition of growing old, itself. No one wants to die, but growing old and losing your independence is a disease all to its own, described in vivid detail in the book.
(I also appreciate that the author was so honest about mentioning taking antibiotics before drinking water from the Ganges [and still getting sick!]).
I heartily second this recommendation (Being Mortal). It is very well written and thoughtful.
In fact, when my wife gave it to me, I wasn't even interested in end of life issues - who wants to read about death in the middle of winter? But I was immediately sucked in and enjoyed it thoroughly.
This is one of the most honest and genuine observations I've ever heard; an observation that one can likely only fully appreciate in the face of mortality.
Please, if anyone else reading this has the same cancer, do not listen to any medical professional saying to lay back and die. Sacks was, lucky if it can be called that, to have the less aggressive strain of Ocular Melanoma that metastasized. The most aggressive usually results in death in 18 months, but there is progress being made to extend this to 4 years. Look up Dr Sato of Thomas Jefferson. He's the expert on this cancer. Your loved ones will be extremely grateful for an extra 2 years with you, and the best treatments barely degrade the quality of your life at all.
Eeking out an extra (potential) 2 years in exchange for the mental and physical torture of chemotherapy is not worthwhile for some people, particularly the elderly.
If you are reading that and discovering Oliver Sacks for the first time, or just haven't read any of his books, may I recommend that you get a copy of Uncle Tungsten? It's wonderful memoir of growing up in London and a history of chemistry.
I love all of his books, but for me Seeing Voices has been a life changer in how it shifted my perspective of the world and of how we should treat each other.
Not that I would consider myself a terrible person before reading it, but it made me aware of wrong ideas I had because I never gave them much thought because I did not need to think about them.
Basically the hearing equivalent of white or male privilege. Which kind of opened up the thoughts about other privileges I might have been unaware of.
May I recommend that you just read everything. Maybe I'm just a grief-stricken fan, but I'm pretty sure that Oliver Sacks hasn't written a sup-bar or un-interesting sentence in his entire life.
I feel intensely alive, and I want and hope in the time that remains to deepen my friendships, to say farewell to those I love, to write more, to travel if I have the strength, to achieve new levels of understanding and insight...I feel a sudden clear focus and perspective. There is no time for anything inessential. I must focus on myself, my work and my friends. I shall no longer look at “NewsHour” every night. I shall no longer pay any attention to politics or arguments about global warming.
Great advice for everyone. We are all dying. The magnitude of our vectors may be different, but the direction is always the same.
The first book I ever bought the woman who became my beautiful wife was Sacks's The Man who Mistook his Wife for a Hat. She had mentioned enjoying some Psychology studies, so it seemed relevant.
His writing then, as now, leaps off the page and dances with your mind. Sadly, we will soon lose any possible new writing, and joyously he leaves a lifetime of work as a legacy.
The Man who Mistook his Wife for a Hat is such a wonderful book - perhaps my favourite. The characters and ailments of each case are fascinating, but it's Sacks' empathy and understanding that really makes the books special.
Every few pages I would stop reading, stare into space and contemplate the unusual perspective that he has elucidated. Not many books have such an effect.
If you haven't read The Man who Mistook his Wife for a Hat, please add it to the top of your list.
This is also one of my favourite books of all time, and many of Dr Sacks' books are other top contenders. Quite apart from his wonderful human aspect, and the fascination and empathy he has with his patients, it's very thought provoking. I had never really considered how totally wonderful our perception and consciousness mechanisms are until I was forced to by reading his accounts of patients who for one reason or another are missing them. For example, the title story is a man whose vision is perfect, but totally lacks the ability to synthesise the forms he's perceiving into objects, so he has no idea what he's looking at. Truly fascinating. What amazing abilities we all take for granted.
I should write a note for my wife and children in case an accident happens, so I can express to them how happy a life I've had with them, even if I died before realizing my dreams.
I use a dead man switch to email my wife and eldest child in case something were to happen to me. Basically a good bye note and technical details of how to get into my password application. From there they can get into my email and any other accounts that need dealing with.
Better yet: record a video. It will be more personal than just a note.
Also you mentioned your children being young. You may want to record videos for their various birthdays and other life events in case you are no longer alive. I know I will do this when/if I have any children.
I have been increasingly conscious, for the last 10 years or so, of deaths among my contemporaries.
I am about half the age of Oliver Sacks. In the past year I've gone to two funerals for people younger than I am. It's a very poignant reminder of your own mortality when people your age or younger pass away.
It's a beautiful essay, and I don't mean to undermine its gravity but one thing he mentioned has me curious. How does one conclude that two tumors are related? Might it be that the cancer that metastasized in his liver is independent of that that was in his eye?
He is a neurologist, I am not intending to challenge, just curious and I know there are people here that know much more than I do.
My mom died from this exact same (super rare) cancer. Ocular melanoma almost always metastasizes to the liver. For a ocular melanoma survivor, a liver check every 6 months is highly recommended. It seems his tumor in his eye had the mutation that makes it very unlikely for it to metastasize (5%), the other half of tumors have a much higher rate (66%). Either way the metastasize will usually happen within the first 10 years after discovering the original tumor.
This seems like a perfect opportunity to share some more reflections on death from those who are often closest to it, doctors themselves. It appears that many (most?) doctors choose to spend their final days differently than most of their patients.
Anything that is related to death and uncertainty in general kindles lot of thought in one's mind. I for one, have always considered it to be a great interest to read about them. Here is a prose, written roughly 2000 years ago, dealing with death. It compares death to a sinking ship in a calm deserted ocean (contrast to violent shipwreck). Death engulfs the old ship very slowly.
Translation:
The bonds of friendship are broken, friends, relatives and wive have become cold in love, or few, the cords of love are loosened. Consider the matter well. What profit is there in the attached state? Oh, it is come, the wail of distress, as when a ship founders!
> This is not indifference but detachment — I still care deeply about the Middle East, about global warming, about growing inequality, but these are no longer my business; they belong to the future.
This quote sticks out to me, I feel everyone acts, by and large, like this towards these issues (or most issues) regardless of age or health. Probably my pessimistic view of the world, very interesting to read from him.
81 is a reasonably good innings, slightly above the average for the US, and just about the average for the UK (Sacks is British-American, I believe) - one wouldn't describe dying at that age as a particularly early or premature death.
I think it's hard to separate that intrinsic fact from his stoicism on the subject, impressive though it is. I'm sure it's not easy at any age to face your impending demise, but knowing you've led a pretty long and very successful life perhaps makes it an easier pill to swallow. And, to be a little cynical, we're reading this in a column in The Gray Lady - perhaps he's terrified on the inside but putting on a brave face for the public, either to keep up appearances or to be a source of inspiration for others.
Seems like this would be a good day to re-watch "Awakenings"...
One of the great sages of the world soon to leave us. I love his writing and the different perspectives that his work has offered me. He'll be missed and as bad as this sounds I'm excited to see what writings he comes up with as he takes the final steps of his journey.
Most of his reflections on how to live with terminal illness seem like a fulfilling way to embrace life at any time. Funny how our focus has to be retrained so often on the things we already know are the most important.
[+] [-] sswaner|11 years ago|reply
[+] [-] sixQuarks|11 years ago|reply
[+] [-] protothomas|11 years ago|reply
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[+] [-] tbrake|11 years ago|reply
Having not read the book and the viewpoint it presents I do feel like there's also a bit of responsibility - I hesitate to use "blame" or "fault" - on the patient or patient's family for keeping them alive on machines and treatment that cost way too much. Perhaps the establishment is an enabler in that sense but what would they be if they didn't respect the wishes of the dying?
[+] [-] experiment0|11 years ago|reply
http://www.bbc.co.uk/programmes/b00729d9
[+] [-] jeffreyrogers|11 years ago|reply
I have many relatives and friends in medicine. They will let you end your life the way you want to (for the most part) but you have to be firm about what you want. Doctors don't like telling people they're dying because it is a hard conversation to have. And most people, even those who are aware of the statistics, like to cling to the hope that they could be different.
[+] [-] sadkingbilly|11 years ago|reply
I also hadn't fully grasped the condition of growing old, itself. No one wants to die, but growing old and losing your independence is a disease all to its own, described in vivid detail in the book.
(I also appreciate that the author was so honest about mentioning taking antibiotics before drinking water from the Ganges [and still getting sick!]).
[+] [-] hnnewguy|11 years ago|reply
PBS Frontline (which consistently produces awesome journalism) recently did a documentary based on this book:
http://www.pbs.org/wgbh/pages/frontline/being-mortal/
[+] [-] mlrtime|11 years ago|reply
[+] [-] quickpost|11 years ago|reply
In fact, when my wife gave it to me, I wasn't even interested in end of life issues - who wants to read about death in the middle of winter? But I was immediately sucked in and enjoyed it thoroughly.
[+] [-] mdtancsa|11 years ago|reply
[+] [-] avz|11 years ago|reply
Beautiful.
[+] [-] geoffsanders|11 years ago|reply
Beautiful, indeed.
[+] [-] tpopp|11 years ago|reply
[+] [-] MagicWishMonkey|11 years ago|reply
[+] [-] jgrahamc|11 years ago|reply
[+] [-] vanderZwan|11 years ago|reply
Not that I would consider myself a terrible person before reading it, but it made me aware of wrong ideas I had because I never gave them much thought because I did not need to think about them.
Basically the hearing equivalent of white or male privilege. Which kind of opened up the thoughts about other privileges I might have been unaware of.
[+] [-] inglesp|11 years ago|reply
[+] [-] MartinCron|11 years ago|reply
[+] [-] 3stripe|11 years ago|reply
[+] [-] edw519|11 years ago|reply
Great advice for everyone. We are all dying. The magnitude of our vectors may be different, but the direction is always the same.
[+] [-] JacobAldridge|11 years ago|reply
His writing then, as now, leaps off the page and dances with your mind. Sadly, we will soon lose any possible new writing, and joyously he leaves a lifetime of work as a legacy.
[+] [-] MarkMc|11 years ago|reply
Every few pages I would stop reading, stare into space and contemplate the unusual perspective that he has elucidated. Not many books have such an effect.
If you haven't read The Man who Mistook his Wife for a Hat, please add it to the top of your list.
[+] [-] lemming|11 years ago|reply
[+] [-] Jolijn|11 years ago|reply
[+] [-] bentcorner|11 years ago|reply
[+] [-] tomjen3|11 years ago|reply
Also you mentioned your children being young. You may want to record videos for their various birthdays and other life events in case you are no longer alive. I know I will do this when/if I have any children.
[+] [-] tome|11 years ago|reply
[+] [-] 300bps|11 years ago|reply
I am about half the age of Oliver Sacks. In the past year I've gone to two funerals for people younger than I am. It's a very poignant reminder of your own mortality when people your age or younger pass away.
[+] [-] CartyBoston|11 years ago|reply
He is a neurologist, I am not intending to challenge, just curious and I know there are people here that know much more than I do.
[+] [-] sswezey|11 years ago|reply
[+] [-] copperx|11 years ago|reply
[+] [-] mturmon|11 years ago|reply
[+] [-] jpdoherty|11 years ago|reply
[+] [-] kristofferR|11 years ago|reply
[+] [-] ahussain|11 years ago|reply
http://www.vanityfair.com/news/2011/06/christopher-hitchens-...
[+] [-] gmisra|11 years ago|reply
http://www.zocalopublicsquare.org/2011/11/30/how-doctors-die...
http://www.nytimes.com/2013/11/20/your-money/how-doctors-die...
[+] [-] guruparan18|11 years ago|reply
Translation: The bonds of friendship are broken, friends, relatives and wive have become cold in love, or few, the cords of love are loosened. Consider the matter well. What profit is there in the attached state? Oh, it is come, the wail of distress, as when a ship founders!
See: http://www.tamilvu.org/library/l2800/html/l2800ind.htm for original text.
[+] [-] ProAm|11 years ago|reply
This quote sticks out to me, I feel everyone acts, by and large, like this towards these issues (or most issues) regardless of age or health. Probably my pessimistic view of the world, very interesting to read from him.
[+] [-] jusben1369|11 years ago|reply
[+] [-] bshimmin|11 years ago|reply
I think it's hard to separate that intrinsic fact from his stoicism on the subject, impressive though it is. I'm sure it's not easy at any age to face your impending demise, but knowing you've led a pretty long and very successful life perhaps makes it an easier pill to swallow. And, to be a little cynical, we're reading this in a column in The Gray Lady - perhaps he's terrified on the inside but putting on a brave face for the public, either to keep up appearances or to be a source of inspiration for others.
Seems like this would be a good day to re-watch "Awakenings"...
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