The New York Times ran a great opinion article by Dudley Clendinen last Sunday called The Good Short Life. Great title. It’s about just what it sounds like.
Mr. Clendinen has A.L.S., the best known of the motor neuron diseases which are generally held to be one of the most difficult ways to die. It involves a gradual shutting down of the involuntary nervous system which, when left to its own devices, leads to a very, very slow suffocation. The disease takes years to play out and is beyond horrible.
In the article he talks freely, openly, and gracefully about the good and bad involved with dying…and I love him for it. He’s refusing to disappear into that cloud of gray mist where we so often relegate our dying–that place where we don’t have to see them or deal with them or think about what they’re going through. Instead he’s speaking up (or writing up in this case), doing his part to maintain a normal, ongoing, comfortable chat about the whole thing. About dying, that one other universal reality besides being born and drawing breath that we all have in common.
The article is two pages and worth a read.
He broaches a number of controversial topics including the overwhelming costs involved with long term medical care for a condition such as his and the moral question of who’s going to pay for those costs (…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…) He also talks about the choice he’ll have to make about when he’ll die because that’s something those with a motor neuron disease always face; when to fight it, when to manage it, and finally how to either surrender or escape it, whether through the blessing of pneumonia or other infectious disease or a method more proactive.
Of course these are extremely loaded subjects to address, ones which tend to invoke some very strong emotions in people, but that doesn’t mean we don’t still need to talk about them. Our medical system has advanced to the point where most of us are eventually going to have to face the same kind of choice as Mr. Clendinen. A lot of people don’t understand this yet but most of us won’t just die anymore. Medical advances have made it possible to sustain the barest physical functioning for indefinite lengths of time, usually far, far longer than anyone desires. This means that sooner or later someone has to actively, consciously decide that we’re going to die. Either we decide to forgo further treatments, our loved ones decide to withdraw life sustaining measures, or somebody else decides they’re not going to pay for it or provide us care anymore.
This is the darker underbelly–the turbulent, terrifying, whitewater rapids–we’ve created with our brilliant, modern, technological capabilities. For better or worse, these are the kinds of choices that now go with the territory and we are all going to have to learn how to navigate them. There’s no such thing as a gift–however miraculous, however blessed–that isn’t also accompanied by a burden of responsibility. In this case we now need to learn how to bear the burden of miraculous choices.
Not everyone will agree with the particular choices Mr. Clarinden eventually makes–which is fine, everyone doesn’t have to–but we can all benefit from studying the way he’s willing to talk about them. Each of us, when faced with the unique circumstances of our own dying time, is going to have equally difficult choices to make, and simply knowing how to talk about them with our doctors and loved ones will make them far easier for everyone to navigate.
copyright Dia Osborn 2011
$500,000 a year and “someone” is paying for it. That really stood out for me. When I made the transition from buying cars on credit vs. paying cash…it made a huge difference on the decisions I made. It sure feels like we are writting checks we can’t cash in most areas of our societal life including medical.
When I hear stories like this…I so admire your patient with a similar disease that choose to stop drinking water. To live a life and only go through 7-8 days of “labor” seems like a good bargin.
Thanks for doing what you do…
He was dying of a motor neuron disease, too. God, I learned so much from him.
You’re absolutely right that this is something that needs to be more often considered and discussed. I appreciate you posting the article and your commentary. I responded on my own blog — as I am one of those who you cite that disagree with Clendinen’s decision. Of course it’s a nuanced issue, and you rightly note that our medical and technological advances have a strange ethical consequence… but I nonetheless disagree with Clendinen’s particular decision.
My post is here: http://www.yabottherobot.com/2011/11/10/to-live-to-die/
Again, I appreciate you posting.
Thanks to you and Dudley Clendinen for the truth about living and dying with this horrible and terrifying disease. The awful challenges some of us must face! They and so much suffering that life brings humbles me. Not to face them openly and directly brings still greater suffering. I read Mr C’s NY Times article with awe, admiration and respect.
The courage of people who speak aloud like this, saying the things that we all think about in secret but are afraid to broach, amazes me. Every time.
I wrote you about qualities that true elders carry. Dudley C obviously holds them within his being.
Ah yes. Good example. Thanks.