Posted by Charles Cowling
I HAVE wonderful friends … one, from Texas, put a hand on my thinning shoulder, and appeared to study the ground where we were standing. He had flown in to see me.
“We need to go buy you a pistol, don’t we?” he asked quietly. He meant to shoot myself with.
In addition to wonderful friends, New York Times journalist Dudley Clendinen has ALS, commonly called Motor Neurone Disease in the UK. In a very powerful piece he describes what he’s going to do about it.
There is no meaningful treatment. No cure. There is one medication, Rilutek, which might make a few months’ difference. It retails for about $14,000 a year. That doesn’t seem worthwhile to me. If I let this run the whole course, with all the human, medical, technological and loving support I will start to need just months from now, it will leave me, in 5 or 8 or 12 or more years, a conscious but motionless, mute, withered, incontinent mummy of my former self. Maintained by feeding and waste tubes, breathing and suctioning machines.
No, thank you. I hate being a drag.
I think it’s important to say that. We obsess in this country about how to eat and dress and drink, about finding a job and a mate. About having sex and children. About how to live. But we don’t talk about how to die. We act as if facing death weren’t one of life’s greatest, most absorbing thrills and challenges. Believe me, it is. This is not dull. But we have to be able to see doctors and machines, medical and insurance systems, family and friends and religions as informative — not governing — in order to be free.
He’s not going to do anything to prolong his life: “Lingering would be a colossal waste of love and money.”
Read the whole beautifully thought, beautifully written piece here.
This is such a brave, warm, life affirming piece, Charles, Isn’t it ironic that, in a culture that touts choice as a right and responsibility, this choice is so often, so unreasonably denied.
It’s brilliant, isn’t it, Vale? I hope everyone’s clicking the link and reading the whole thing. We don’t often come across anything of this calibre and extraordinary humanity.
It’s a beautiful piece of work. I would love to know what he has “decided upon” for when the time comes.
Well worth reading the whole piece, thanks for the prompt Charles. And so refreshing to hear someone say that knowing I’m going to die sooner rather than later is actually liberating rather than limiting. I think about death, and life, every day, and it makes me realize that those who say life isn’t a dress rehearsal but the real thing may have missed the mark. It’s all a dress rehearsal, and there is no real thing because what’s real cannot possibly end, or have begun for that matter. For me life’s certain end makes it an experiment – nothing hangs on it forever, and the worst thing that can happen is that the experiment doesn’t work but shows me something I didn’t know. Maybe using life to risk adventuring into personal convictions will make me less comfortable in the future than the insurance policy approach would have done (I could end up penniless on the street, for instance, if I continue to rely on being a celebrant for a living), but it works out somehow or other; and better, I think, to lie on my death bed knowing I got it wrong than wondering if I could have done it better if I’d dared follow my heart. That’s what encourages me, bit by bit, to abandon my fear, not of death but of life. I’m very cheerful most of the time because I know I’ll die after I’ve lived, and just living sometimes makes me think I’m so, so fortunate. I hope I’ll live a long time, but I also intend to know when it’s time to call time and be happy to die. I’m only sad for those who are going to miss me, but better for them too to have to miss a happy reckless man than a sad safe one.