October 8, 2011 | 10 Tishri 5772

An irreverent look at ALS also known as Lou Gehrig’s Disease - now there’s an oxymoron!

However that would be a pretty accurate description of the essay Dudley Clendinen wrote in July in the New York Times Sunday Magazine sometime after he was diagnosed with ALS.  

One of his friends flew in to buoy his spirits. “We need to buy you a pistol, don’t we?,” the friend suggested. “Yes, sweet thing!”  I said with a smile.  “We do.” Clendinen continued, “At the moment, for 66, I look pretty good.  I’ve lost 20 pounds.  My face is thinner.  I even get some, ‘Hey there Big Boy’ looks which I like.” But it’s not Dudley Clendinen’s irreverence that struck me or makes me bring his article to your attention today.

I learned about this essay in an op-ed written by our upcoming Eizenstat Family Memorial Lecture guest, David Brooks. In the throes of our country’s economic woes and financial mess Mr. Brooks wrote, “This fiscal crisis is about many things…(and one of them is)…our willingness to spend our nation into bankruptcy to extend life for a few more sickly months.”

While David Brooks’ column is intriguing, his point about the ever-rising costs of medical care for the terminally-ill is also not the reason I bring his perspective on the Clendinen essay to your attention today. No, I share it with you because in succinct and gut-wrenching terms, Dudley Clendinen captures the inevitable outcome of expensive medical intervention when it comes to ALS and other undeniably terminal illnesses.

He, himself, states that outcome in graphic terms. “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…a conscious but motionless, mute, withered, incontinent mummy of my former self…maintained by feeding and waste tubes, breathing and suctioning machines.”

That, friends, is why I share portions of Dudley Clendinen's essay and David Brooks’ reference to it with you. Because both men raise a stark issue that a number of us, unfortunately, have been forced or will be forced to face. It may be ALS, it may be dementia or some other debilitating disease--- When the prospect of certain death becomes undeniably clear and progressive disability robs us or our loved ones of personhood, how should we approach the time that remains?

Our tradition tells us over and over again that God is the final arbiter of life. Any number of Jewish sources reinforce that message. Oh yes, our High Holiday liturgy tells us that our actions are significant – We can change and make a difference. But the same liturgy reminds us that throughout this High Holiday period we are sheep passing before the divine shepherd in judgment.

Last night, in fact, we spoke of ourselves as mere clay in the hands of the Potter! And today, we say that the Book of Life is sealed as God decides who shall live and who shall die! The message of the machzor is clear – God is the one who makes the ultimate decisions about life.  

Now, you and I know that isn’t true…at least not factually true. But our High Holiday liturgy still reflects other truths, if not factual ones.

Here is one of them. I know that skilled individuals can authoritatively explain why after weeks of no medical intervention other than palliative care, each of my in-laws and my mother died when they did. But I don’t accept factual truths as the whole truth. No, to me, long after medical intervention oriented toward physical healing had concluded, each of my loved ones’ lives came to an end with a kiss from God.

It is in that sense that I recognize God to be the final arbiter of life…in the mystery that often accompanies the very last hours and moments of an individual’s life. So if we can’t just give everything over to God, what should we do when, like Dudley Clendinen, death is certain and only disability that robs us or loved ones of dignity awaits?

During the course of my rabbinate I have met people who continue to insist upon medical intervention long after loved ones can no longer express their wishes themselves; long after medical intervention can provide healing; and long after illness has robbed loved ones of their precious personhood.

It’s painful to see such scenes unfold. Loved ones who make such decisions deeply care about that person in the bed and really do believe they are acting in his or her best interests.

As a rabbi, I have witnessed the heart-breaking scene of an adult child who simply cannot let go of an infirm parent approaching death. As a son and son-in-law, I harbored short-lived fantasies when doctors mentioned feeding tubes and cancer treatments for parents.

I knew the realities…but I still allowed the doubts caused by the fantasies to seep in no matter how short-lived. Dudley Clendinen personifies and frames the bleak outlook. David Brooks places this terrible situation into its current national context. But today our tradition speaks even louder to us.

To me, its direction is clear from the biblical account of Creation gone awry with Adam and Eve’s sin in the Garden of Eden. After Adam and Eve eat the forbidden fruit I am convinced that God did not punish them, the manner in which most of us read the text of the Torah at that point.

No, Adam and Eve acted exactly as God expected them to act; as they had to act in order to be fully human.

When God instructs Adam not to eat from the Tree of Knowledge, no punishment is attached -- only an outcome – “…for as soon as you eat of it, you shall die” (Genesis 2:17).

That sounds like a punishment, but we know that wasn’t the case because in the Torah’s narrative, Adam and Eve continue to live long after they ate the forbidden fruit and God forces them to leave the Garden. Now Adam and Eve will live in a world that reflects joy and sadness, pleasure and pain.  

They will live in a universe that offers them the opportunity to gain knowledge and, with it, the necessity of having to make difficult choices. No, after eating from the Tree of Knowledge, Adam and Eve did not die. But they now knew they would die… Now they were empowered and obligated to make choices.

Today we continue to be empowered by Adam and Eve’s action. The undeniable recognition of approaching death ought to encourage us and our loved ones to act in forthright ways.

The psalmist declares, “Teach us to number our days”— by which, of course, he means to number them wisely - to use one’s time wisely and, as death approaches, to use time in ways that recognize reality and provide reassuring closure for loved ones and friends.

“Teach us to number our days” – not by counting the days that we or loved ones are physically sustained by medical interventions but by marking the moments in which sentiments that should be expressed are offered; moments in which genuine repentance occur; moments in which loving relationships are renewed.

My friends, Yizkor is a time to confront the possibility of our own demise or the demise of those we cherish before we come together at this time again next year…for who can know?

Dudley Clendinen, a gifted writer, confronts progressive loss almost daily as Lou Gehrig’s Disease takes hold of his body. It has not and will not however take hold of his spirit.

David Brooks, a brilliant New York Times op-ed writer and television commentator who will speak from this bimah in November, worries about the budgetary effects of certain medical interventions for the terminally ill.

Both men take us to a place we can only abhor but which we will likely face at some point – When life is undeniably moving toward its end, how shall we approach the time that remains?

We ought not approach it with watches or calendars. We ought not approach it with interventions and devices that can only forestall the inevitable. How shall we approach it?

Jonathan Larson, who wrote the immensely successful musical “Rent,” was dying as he wrote its words. He didn’t live long enough to see the play debut, let alone, its success. The approach of his own death served to focus Mr. Larson on how to spend the time he had left. His answer is revealed in the breath-taking song, “Seasons of Love.”

How should we approach the time that remains when we or a loved one is undeniably moving toward death?

“Remember the love.  Remember the love.  Remember the love.  Measure in love.”

If and when such a time arrives in our own lives or the lives of our loved ones, may we be blessed to reflect this simple, yet sanctified, truth.

Amen.