Dudley Clendinen on dying and on choosing not to extend his life

Writer Dudley Clendinen is dying of Lou Gehrig’s Disease, or “Lou” as he calls it. He’s written an excellent short essay about the experience of dying, and on his decision to not extend his life.

Here’s a sample from his essay, but I’d recommend reading the whole thing.

I spent hundreds of days at Mother’s side, holding her hand, trying to tell her funny stories. She was being bathed and diapered and dressed and fed, and for the last several years, she looked at me, her only son, as she might have at a passing cloud.

I don’t want that experience for Whitney — nor for anyone who loves me. Lingering would be a colossal waste of love and money.

If I choose to have the tracheotomy that I will need in the next several months to avoid choking and perhaps dying of aspiration pneumonia, the respirator and the staff and support system necessary to maintain me will easily cost half a million dollars a year. Whose half a million, I don’t know.

I’d rather die. I respect the wishes of people who want to live as long as they can. But I would like the same respect for those of us who decide — rationally — not to. I’ve done my homework. I have a plan. If I get pneumonia, I’ll let it snuff me out. If not, there are those other ways. I just have to act while my hands still work: the gun, narcotics, sharp blades, a plastic bag, a fast car, over-the-counter drugs, oleander tea (the polite Southern way), carbon monoxide, even helium. That would give me a really funny voice at the end.

I have found the way. Not a gun. A way that’s quiet and calm.

Knowing that comforts me. I don’t worry about fatty foods anymore. I don’t worry about having enough money to grow old. I’m not going to grow old.

I’m having a wonderful time.

I have a bright, beautiful, talented daughter who lives close by, the gift of my life. I don’t know if she approves. But she understands. Leaving her is the one thing I hate. But all I can do is to give her a daddy who was vital to the end, and knew when to leave.

On a similar subject, I’d recommend reading novelist Terry Pratchett’s essay about his own decision to “live in hope that I can jump before I’m pushed.” (The link appears to be an article about Pratchett’s decision, but if you scroll down you’ll come to Pratchett’s complete essay.)

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6 Responses to Dudley Clendinen on dying and on choosing not to extend his life

  1. 2
    Ampersand says:

    Thanks, anon! I’ve added that link to the cross-post at Family Scholars Blog, as well.

  2. 3
    Simple Truth says:

    Wow, that was very powerful without being angsty. Thanks for sharing, Amp.

  3. 4
    Anonymous says:

    I found out last year, when both my mother and her sister were diagnosed, and some genealogical investigation turned up a cousin of theirs who had died some time earlier, that ALS runs in the family. They haven’t identified the specific mutation that causes it in our family, so I can’t be tested, but the pattern exhibited thus far suggests dominant inheritance, meaning I have a 50% chance of developing ALS if something else doesn’t kill me first.

    I’m reminded of this every time I wake up feeling a bit weak or hit a plateau in weight training, wondering if it might be the beginning of the end.

    In short, this isn’t an academic question for me.

    I plan to do whatever it takes to stay alive as long as I can. I don’t know whether life is worth living with only the ability to twitch a muscle in my cheek. I suspect it is, but I guess I won’t really know until I’ve tried it. But for me that’s beside the point. Progress marches on, and someday a cure will be found. If there’s a chance that I can hang on an extra five or ten years, and in doing so live long enough to benefit from new treatments, then I’m going to take that chance.

  4. 5
    Christine says:

    My beloved boy friend was diagnosed with Bulbar ALS July 2010. He is now in an assisted living facility. He too has decided that he does not want a breathing tube or a feeding tube. He can barely speak now, basically he is just making sounds and is having a very hard time walking. He would love to find a quiet, calm way to take control and leave this world on his own terms. Dudley Clendinen has found a way. I wish him a peaceful journey.

  5. 6
    Grace Annam says:

    Christine, I’m sorry to hear it. We have lost a family member to ALS, too, and it was very difficult and painful, mostly of course for him, but also for the survivors. My heart goes out to you.