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Thursday, February 26, 2015

Oliver Sacks and the Process of Dying at the End of Life

Oliver Sacks is dying. I am saddened and yet at the same time I am happy. A voice of reason has weighed in on the end of life. Most readers  have heard of Sacks. He is a widely respected and his books not only resonate with the public but see very well. Among the books he wrote that have I have enjoyed include a A Leg to Stand On, and Awakenings. A few days ago Sacks wrote that he was going to die in the near future. His short essay has been reproduced and shared world wide. When I read it I was deeply touched because he was not writing about his impending death but how he planned to live. He eloquently wrote the following: 

A month ago, I felt that I was in good health, even robust health. At 81, I still swim a mile a day. But my luck has run out—a few weeks ago I learned  that I have multiple metastases in the liver. Nine years ago it was discovered that I had a rare tumor of the eye, an ocular melanoma. Although the radiation and lasering to remove the tumor ultimately left me blind in that eye, only in very rare cases do such tumors metastasize. I am among the unlucky 2 percent”.

Sacks words are a counterpoint to the typical end of life story reported in the media. Praise has been heaped upon him for good reason. Sacks put neuroscience on the map for the general public. Many of the things he wrote about I witnessed. I spent a decade in and out of the hospital and I saw a myriad of devastating neurological conditions on wards of 16 morbidly sick children. The way parents and their children faced adversity and mortality is something deeply etched in my brain. After reading Sacks poignant words originally published in the New York Times I hope the mass media will engage Sacks’ approach to his death. I doubt this will happen. He is not the sort of person an organization such as Compassion and Choices embraces. There is no fever pitch emotion or tear jerking images. There is no talk of death with dignity. There is no talk about the right to die. All Sacks focused on was life. 

What I found particularly fascinating was Sacks quoting David Hume, who upon learning he was mortally ill, wrote a brief autobiography. Like Hume, Sacks has chosen to embrace life with the knowledge his life will end shortly. Sacks plans to finish more than one book manuscript and enjoy life. Sacks wrote “It is up to me now to choose how to live out the months that remain to me”.  What struck me the most in recent days was Hume’s observation that “It is difficult to be more detached from life than I am at present”. Oh my do I get this. I have lived with a similar detachment with my body and American society for nearly 40 years. Paralysis often precludes routine social interaction. While I forcefully reject the stigma and isolation associated with disability I am detached in multiple ways. If I injure my leg I do not worry about “my leg”. I worry about “the leg” as though it is an inanimate object. This sort of bodily detachment is not unusual among paralyzed people. Far more problematic is the social detachment I often feel. There are days I cannot leave my home. I cannot deal with rude people or do gooders who insist on “helping” me. I rarely permit myself to remain at home. Frankly, I will not give the bipedal bigots that surround me the satisfaction of segregating me from society. Screw them! I am a human being. I have civil rights. 

Facing ones mortality and living with a disability share one thing in common: it offers a person a unique perspective. Sacks wrote: 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. This will involve audacity, clarity, and plain speaking; trying to straighten my accounts with the world. But there there will be time, too, for some fun (and even silliness, as well)”.

I find Sacks words meaningful and in part undermines the highly organized effort to pass assisted suicide legislation. We are all going to die and humans will in one way or another need to process death. In so doing one must take a hard look at their mortality and life. Too many want to avoid this sort of self reflection. It is far easier to not think, rail against how unfair life can be, and become a martyr dedicated to a cause (think Brittany Maynard). Sacks is radically different for he has embraced life and the process has provided “a sudden clear focus and perspective”.  This is what those that advocate for assisted suicide legislation try to obscure and mislead in a single minded way. There is no cheating the grim reaper. There is no cutting class. There is no absenteeism.  Death will take us all and as Sacks notes the end of life is a unique experience. This sober clear headed approach to end of life does not sell well. Instead, advocates crow about autonomy, the right to die and even have a slogan: “My Life. My Choice. My death”. That is a lot of my. My my my my like a two year old with a temper tantrum.  Sacks is far too smart to buy into this sort of simplistic reductionism.  

I struggle to understand why so many are willing and eager to make assisted suicide legal. The rhetoric on the part of those that advocate for so called death with dignity laws is over the top. I for one prefer to contextualize end of life issues. Rational thought is of paramount importance. We get to die once and only once. I for one want to die well. This can be accomplished but it takes work. It requires one to talk about death and end of life issues. This is the sort of discussion few people have. I have had these sort of discussions and they are not fun. They can and often are emotionally painful. Yet I know such discussions must be had. Sacks words remind of this in a way that is enlightening. It is my hope Sacks will get the most of the last months, weeks or days of his life. What he wrote made me think how wonderful the arc of life is. We are born utterly dependent on our parents. Some people die utterly dependent upon others. The range at the end of life is as diverse as life itself. While not all states of life are remembered fondly it is my opinion the end of life is a final stage we all will experience. assisted suicide advocates fear this last stage of life. I will remain forever puzzled why such advocates want to talk about nothing more than death. Let’s talk about life and the wonders, good and bad. Lets think about lives that are worth living. So as I thought about Sacks words I had this image in my head—typical elderly white male, grey hair, suit and tie. Distinguished in a word. As I created this image I googled Sacks and images. Oh I had a great laugh at my own expense. I found the photograph of Sacks below circa 1961 riding a motorcycle. This is how I will remember Sacks. A bad ass researcher on a motorcycle. 




2 comments:

Jennifer Wissman said...

Oliver Sacks book: "Seeing Voices" (http://www.oliversacks.com/seeing-voices/) was one of the first books I ever read on Deaf culture and largely shaped the beginning of my own journey into the world of the Deaf.

william Peace said...

Jennifer, Sacks has never been a favorite writer. But there is no question he has prompted many to become involved in the health sciences. This alone makes him an important figure.