I will manage my ALS meaningfully, and I will not accept the blame for rising health care costs.
I am a PALS (person with ALS) trying to manage my disease. Dudley Clendinen also has ALS, which he calls "Lou," and he has decided to kill himself before he loses the ability to do the deed ("How to die with grace," July 31).
He has determined that the cost/benefit ratio of staying alive, unable to be anything but "a conscious but motionless, mute, withered, incontinent mummy of my former self" is not worth it.
Clendinen voices the fears that all of us with ALS have. The disease is cruel, and none of us relishes the disabled future it portends.
I support Clendinen's right to determine his own path, but it is a dangerous place. What he has done is "make sense" to the temporarily able-bodied (TAB) community about how to do debilitating, chronic disease.
His writing reaches out to an able-bodied readership that can too easily accept its premises without real question. After all, if you are able-bodied, why would you want to live as an incontinent, withered mummy?
And he has struck a chord with influential TABs. Consider New York Times columnist David Brooks, who picked up Clendinen's article in a piece (not published in the Star Tribune) called "Death and Budgets."
Brooks wrote: "Clendinen's article is worth reading for the way he defines what life is. Life is not just breathing and existing as a self-enclosed skin bag. It's doing the activities with others you were put on earth to do.
"But it's also valuable as a backdrop to the current budget mess. This fiscal crisis is about many things, but one of them is our inability to face death -- our willingness to spend our nation into bankruptcy to extend life for a few more sickly months."
Brooks speaks with the arrogance of a TAB. Rather than question an economy and health care system that easily generates a cure for erectile dysfunction but cannot get its head around massive neurological breakdowns, he blames our overpriced health care on giving grandma two more weeks of ICU.
But he isn't without some compassion, stating, "Obviously, we are never going to cut off Alzheimer's patients and leave them out on a hillside." I'll try not to be too grateful.
My wish to meaningfully manage my disease is not responsible for the oversized cost of health care. Because Dudley Clendinen has decided to kill himself, don't look to me to follow suit. Managing Lou is expensive, but not managing Lou is immoral. There are other choices.
Clendinen could use his disease for good. He qualifies for a drug trial, something for which it is difficult to find enough qualified participants with ALS. And there are familial considerations. My family wants me to engage in disease management.
As a PALS, I understand how easy it is to give up, to ask, "Why should I go on?"
That place is an open sore if you start interpreting the management of enormous disability with the myopia of able-bodied empathy. You don't know what the choices are until you face them yourself. A good death is not cheap.
How's this for a good death? It is predicated on a good life, one in which we take the opportunities given to make the way a little better for others.
It is looking for the good in each gift of a waking day.
It is understanding that a good life is easy when everything seems like it is going your way, but the proof of goodness comes when conditions are most adverse, when the deck is stacked against you, when the most mundane of behaviors might require a day's worth of energy.
It is not offing yourself with the thanks of a grateful nation.
Aging is the ultimate chronic disease. Each of us will have to learn its meaningful management. None of us has special knowledge.
I don't, Dudley Clendinen doesn't, and David Brooks certainly doesn't. We all will face the choices of disease. Clendinen and I just face them at the speed of ALS.