Against the dying of the light

I keep seeing people discussing the New York Times piece on Sandra Bem’s suicide after she decided her Alzheimer’s disease had gone too far. It’s a beautiful and thought-provoking piece, and I have great respect for the thoughtful and loving way Bem and her family went through a very painful process.

But do you ever notice these are the only pieces you see about death? Before the piece on Bem, it was “Oliver Sacks on Learning He Has Terminal Cancer” and before that it was “How Doctors Die” that were going around my newsfeed. About coming to terms with one’s own mortality, refusing end-of-life treatment, perhaps stockpiling narcotics just to be sure. About people who can think through their own end rationally, weigh the pros and cons.

After reading a lot of these articles, I had the idea that this was the way to do it. The correct way to die was with acceptance, with grace, with foresight, with planning, with documentation.

And then I spent two years living with a person who was dying. My mother-in-law Did Not Want to Talk About being sick. She did not want to plan for the future. She did not want to discuss hospice. She did not write letters to her grandchildren, or give us last messages, or any of the things I expected.

It took me a while to realize that was okay. She loved being alive, and she hated to think of stopping even when her quality of life was bad. She was not ready to go. She was never going to be ready.

It was easier for her that she went a little before any of us expected, that she said goodnight and went upstairs to bed for the last time without any tearful goodbyes. Her last message to us was how to clean the fish tank. There will never be a New York Times piece about that.

There is not only one correct way to die.


4 thoughts on “Against the dying of the light

  1. Nigel Ogilvie

    Julia, Your pieces are so concentrated, elegantly simple language & syntax. “Pithy” to use an old-fashioned term.

    One of my father’s gifts to me is a belief in afterlives. His last words to me, 2 or 3 days before he died, included “I am sure everything will be quite alright on the other side.” He also gave me this gift completely unencumbered by any religious doctine, ‎as he was v v skeptical of all organized religion.

    I am moderately healthy @ 60, but meditate on the same questions you raise. ‎Inheriting Dad’s belief is remarkably comforting.

    Keep up the great posts!

    Nigel R. Ogilvie, CFA
    Financial Supervision & Regulation
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    “There are no passengers on Spaceship Earth. We are all crew.” – Marshall McLuhan citing Buckminster Fuller

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  3. Matthew

    Your piece reminds me of my sister, who died of leukemia in 1976 (at 30). She fought to the end, and though she did plan a bit for her demise, did little aside from estate planning and requesting that we play Paul Simon’s “The Boxer” at her funeral (‘the fighter still remains…’). Needless to say she also was fond of the Dylan Thomas poem.

    At one point she had to go to the hospital for a transfusion because her platelet count was approximately zero and her hematocrit somewhere between ought to be on and IV and ought to be dead. The doctor, concerned that she was so weak, asked what she’d been doing. She said she’d been splitting wood.

    At one point in the hospital some doctors were concerned about her lack of equanimity, and sent for a minister to counsel her. She let him have it. She pointed out that anyone who is not pissed off to be dying at 30 should be considered crazy.

    Someone asked at one point what if she survived but became a vegetable. Her response: “Water me.”

    My sister was a difficult and prickly and sometimes disturbed person, and we had a stormy childhood relationship, but I sure as hell respected her at the end. She knew the value of life.



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