a life violated

ulrichkarljoho @flickr

I just read for a second time a devastatingly honest piece by Michael Wolff about dealing with his mother’s slow demise, “A Life Worth Ending.”

It’s an important piece for all to read, not only those with elderly or ill parents but anyone who, replete with good intentions, hopes to live a long life or prolong that of those we love. The picture is not a bright one, but is so very true. Wolff peels away the shiny veneer of long-term health care, describing this “no-exit state that persists longer and longer, one that is nearly as remote from life as death.”

He describes the slow paso a paso path of his mother’s decline and how at each step of the way he and his siblings did what they believed to be best for her yet how as time went on questioned if they had simply condemned her to what became a particular yet fiercely quiet hell, exquisitely tended yet locked in a gilded cage on the Upper West Side, a “pre-coffin” as he described it.

What struck me about his description was not only how he addressed the truths of our health-care system but also how he described the collateral damage, the personal devastation of the process of navigating through it.

Losing a loved one into the maze of long-term care is a loss which doesn’t come suddenly but which seeps into our rooms until one day we wake up and realize we are drowning, or that we’ve in effect drowned those we were trying to save, each of us thinking ourselves alone in our leaky lifeboat, in a sea dotted with other sinking boats hidden by the fog.

Reading (finally) Wild, by Cheryl Strayed… and I now see the source of the ineffable humanity and empathy which colored every word she wrote in her previously anonymous “Dear Sugar” columns. Like Claire Biddle Smith who wrote of her experience in The Rules of Inheritance, Strayed was far too young when her mother’s death pitched her into a vortex at whose bottom of which was an intense and devastating solitude. Both women were propelled in their grief down twisted paths until finally they were able to gain purchase to crawl out from it. Theirs are stories of courage and redemption. So brave they were, they are.

The tale Wolff tells is a far different one. A death that comes when a life has been well lived and when the body is simply too frail and tired to continue on has little nobility. Supporting an existence, sterile and artificial and bereft of beauty, due not to the power of the human body but instead the power of modern medicine, exposes our frailties and our flaws and little of our strengths or what makes us good. In Wolff’s words—

We make certain assumptions about the necessity of care. It’s an individual and, depending on where you stand in the great health-care debate, a national responsibility. It is what’s demanded of us, this extraordinary effort. For my mother, my siblings and I do what we are supposed to do. My children, I don’t doubt, will do the same.

And yet, I will tell you, what I feel most intensely when I sit by my mother’s bed is a crushing sense of guilt for keeping her alive. Who can accept such suffering—who can so conscientiously facilitate it?

Difficult to imagine if you’ve never faced it, but how much better off we’d all be if this discussion is had before you do.

When my mother’s diaper is changed she makes noises of harrowing despair—for a time, before she lost all language, you could if you concentrated make out what she was saying, repeated over and over and over again: “It’s a violation. It’s a violation. It’s a violation.”

(n.b. If you read Wolff’s piece, please don’t ignore the 300+ comments which follow it…)


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