Tuesday, July 22, 2014

Choosing life in the face of death

A transcript of my remarks at Congregation Torat Emet in Bexley, Ohio, on July 17. 2014.

I never wanted to be known for having a fatal disease. But you don’t get to choose your reputation any more than you get to choose your fate. Several years ago terminal cancer called to me and I answered Hineni, “Here I am.”

The religious language may seem blasphemous, as if I were claim­ing to be a prophet, but that’s not what I mean at all. What I mean is Hashem places you in your circumstances, and even the most ordinary of persons can discover his unique role in life, his calling—he can help to complete creation—if he recognizes and accepts where he has been placed.

Etty Hillesum, a 28-year-old Dutch Jew who voluntarily reported to the Westerbork transit camp in 1942 to work in the social-welfare depart­ment there, explained her reasons like this:This much I know: you have to forget your own worries for the sake of others, for the sake of those whom you love. All the strength and faith in God which one possesses must be there for everyone who chances to cross one’s path and who needs it. . . . You must learn to forgo all personal desires and to surrender completely. And sur­render does not mean giving up the ghost, fading away with grief, but offering what little assistance I can wherever it has pleased God to place me.[1]I was diagnosed just before Sukkot in late September of 2007. My doctor phoned to say that an “opacity” had shown up on my chest X-ray after routine physical exam. A biopsy at Methodist Hospital in Houston about ten days later revealed Stage IV metastatic prostate cancer with a Gleason score of nine, meaning the cancer would be extremely difficult to treat. I was given one to three years to live.

I hungrily compared myself to other men with the same cancer—the literary critic Anatole Broyard got 14 months, the rock musician Dan Fogelberg three-and-a-half years, my friend and mentor Denis Dutton, editor of Philosophy and Literature, two years—and so I was vigilant for death, although I never knew when it would arrive. Naomi and I planned our lives as if the cloud of uncer­tainty were not hovering above us. We moved to Columbus and joined Torat Emet in August 2010, hoping that my cancer would remain dormant. By spring, however, it had awakened from its slumber and begun to spread again. By last fall the cancer stopped responding to drugs and invaded my bone marrow. I began pal­liative chemotherapy, to improve my quality of life, and I was taken under the wings of hospice care. It is now just a matter of time.

The facts are vulgar, and perhaps even a little tedious. This year some 233,000 men will be diagnosed with prostate cancer, and about 29,500 will die of the disease. Between diagnosis and death, however, many cancer patients linger for a number of years. [My wife] Naomi points out that the term life-threatening disease is not always appro­priate. A lot of patients like me have what should be called a life-limiting disease.

That is, for many people cancer has become a chronic condition. The biblical span of their lives—seventy years, and if with strength, eighty years—has been limited, but so too has the scope of their lives, what they can do and can’t do any more because of their cancer.

Because of my hip, which has been destroyed by cancer, I can’t play catch or one-on-one basketball with my three boys. I can’t pick up my six-year-old daughter; I can’t dance with Naomi. Perhaps most unhappily for me, I can no longer travel. I have never been to the state of Israel, and now I will never go.

But here, here on the downslope of life-limiting disease—here exactly is where I can offer a little assistance, since here is where God has placed me.

I can remember exactly when everything changed for me. It was more than six years ago now. We were still living in Houston. I was sitting in the back bedroom, rocking in a rocking chair between cycles of aggressive chemotherapy, and I was strug­gling to read some hefty book that would have caused me no trouble in my pre-cancerous days—The Adventures of Augie March, I think it was.

Chemotherapy had left me with “chemo brain,” a state of mind in which everything was fuzzy and no idea ever wandered. I could not make any sense of Bellow’s book. I felt profoundly sorry for myself. “Oy, I can’t think any more,” I moaned; “I can’t think any more.” Suddenly I stopped rocking. “Hey, wait a minute,” I said; “that’s a thought.”

From then on I decided that, if I could no longer think as sharply as I once did, I could still think. If I could no longer play with my boys as I once did, I could still play with them. If I could no longer be married to Naomi “for­ever,” as I once promised, I could still be married to her for as long or short a time as remained to me.

Since then I have become something of a public advocate for the view that even a person with terminal cancer, for whom it seems as if only death is real, can nevertheless choose life. As I wrote in a recent essay called “The Mercy of Sickness before Death”:Hope is not . . . what the terminal cancer patient needs. What cancer patients need more than anything is to take responsibility for their disease. From their doctors, from their family and friends, and especially from themselves, they need simple honesty about their condition, their treatment options, their chances. They require exactly what [anyone] requires if he is to grow as a human creature: the “square recognition of his being as he is, without minimizing or exaggerating.”Responsibility, honesty, facing reality—if my oncologist is to be believed, most cancer patients find these very difficult to achieve. Denial and despair are the more usual long-term reactions to a diagnosis of terminal cancer.

But denial and despair are merely refusals to accept the responsibility of finding, under the sign of death, a new purpose and meaning to life. Denial and despair are rejections of what the great American Catholic writer Flannery O’Connor calls “one of God’s mercies.”

In what way, though, can a diagnosis of terminal illness and a long sickness before death possibly be merciful?

Some of you know that Naomi’s and my brother-in-law Scott—her younger sister’s husband—died last year just six months after being diagnosed with multiple myeloma. By comparison, living for six-and-a-half years with a slowly wasting disease is a lenient sentence, even if it is a death sentence.

But there is more to God’s mercy than that.

On the same day I was diagnosed with cancer, the same day, Naomi learned that she was pregnant with our fourth child—our only daughter, Mimi. The coincidence was a miracle. Both Naomi and I saw God’s hand in it. It was as if God were saying, “I have set before you life and death, blessing and curse, the birth of your daughter and your death from cancer. Now, there­fore, choose your daughter—she is my blessing—choose life.”

Last Shabbes, my eye was snagged by David’s lines from Psalm 30, the shir for the dedication of the Beit HaMikdash, which we recite before Pesukei d’Zimra. The Psalm has long baffled our commentators, because nothing within it has anything whatever to do with the Mikdash. Instead, it is David’s reflection upon life-threatening illness. He cries out to God:Mah betsa b’dami,
b’ridti el-shahat.
Hayodkha afar,
Hayagid hamitekha.

What profit is there from my death,
from my descent into the pit?
Can the dust praise you?
Can it declare your truth? (v. 10)
What do these lines have to do with the Mikdash? The answer is this. For David, the Temple represents—and for me, who finds such comforting warmth within it, shul represents—an ascent from the pit, a respite from death, the opportunity to praise Hashem and luxuriate in declarations of his truth.

What a mercy it is to have that opportunity!

It is also the opportunity to prepare oneself for death, to lay back in the love of your friends and family, to live in absolute spiritual freedom.

This, by the way, is why I hate being advised to “fight” my cancer. I am angered by obituaries which say that so-and-so “lost his battle” against cancer. It’s bad enough the military metaphors imply that those who die of cancer have put up a weak and pathetic fight, as if they were sad sacks like the Polish Army overrun by the German Wehrmacht during World War II.

But what is worse, to seek to “fight” my cancer is to struggle fruit­lessly against physical necessity. There is nothing I can do to fight my cancer. It is going to kill me, and within the next few months. To rage against the verdict is a waste of my inner resources. It is another form of denial.

But if the language of “fight” and “battle” is not the right language, what is? What should people say to terminal cancer patients?

The frum [Orthodox Jewish] impulse is to say Refuah shlema, “may you have a complete recovery.” But this is hardly fitting for some­one, like me, for whom there is no refuah, no recovery.

Not knowing what to say, then, many people say nothing at all. Oh, they will tell themselves that they wish to spare me, because they are afraid of saying the wrong thing, but the truth is they are only sparing themselves. It is a real problem, what to say to the dying, but the problem is not solved by not solving it.

What I have found most consoling is the knowledge that my wife and children will be looked after—they will not be left alone, even after I leave them. The best thing anyone has ever said is what Joni Schottenstein said to me: “Don’t worry, David. I already have someone picked out for Naomi.”

The quiet and firm assurance Joni’s husband David gives me, that he will be my sons’ surrogate father whenever they need him, silences my deepest fears. Kenny Steinman and Rafe Wenger decline the obligation of pulling long faces and being solemn—they treat me as if I still have a sense of humor and might still enjoy the human comedy. A friend who is a music critic [Terry Teachout], hearing that I was too beaten by chemo­therapy to do more than listen to music, recommended the blues singer Jimmy Rushing, who lifted my spirits like Mimi’s butterfly kisses.

The thing to remember is what Naomi and I have learned from this six-and-a-half-year journey: life is not a matter of peak experiences, of amazing sights and even more amazing thrills, but of small pleasures—a good meal, a good book, good company, good conversation. Right there is where life needs to take hold of the gravely ill again.

We who are dying need from you what we should be demanding from ourselves—responsibility, honesty, the courage to face reality squarely. It matters less what you say to us than how you talk to us—face-to-face, as Moses spoke with God. And after all, who knows but that you might be the one, by your kindness and faith, to give us the strength to choose life in the face of death?

[1] Etty: The Letters and Diaries of Etty Hillesum, 1941–1943, ed. Klaas A. D. Smelik, trans. Arnold J. Pomerans (Grand Rapids, Mich.: William B. Eerdmans, 2002), pp. 477–78.


Rand Careaga said...

Reading this I am put in mind of Peter De Vries. In The Blood of the Lamb, the protagonist’s dying daughter leaves a note for him, discovered posthumously, in which she quotes one of his own essays back to him (there’s some missing context here, of course, but bear with): “Man has only his own two feet to stand on, his own human trinity to see him through: Reason, Courage, and Grace. And the first plus the second equals the third.”

Unknown said...

You have always been a wonderful teacher, and your students can attest to that absolute fact. Now, however, you have transcended the classroom. You have taught all of us something that we would never discover in a classroom: life is everything. Thank you.

Robert Glazier said...

I've been reading your blog for several years. Last Summer I was diagnosed with pancreatic cancer, and assumed that I had only months left. Through my journey, you have been a model to me of how to confront a fatal illness—with intelligence, honesty and faith (similar to the words of De Vries). As it has turned out, I have done surprising well, and have a good chance of living years more (maybe many years). You continue to be teach and inspire me.

Susan Messer said...

There has always been so much to learn from your postings here and elsewhere. And in this latest piece, more than ever. I will remember this post, including the experience of reading it, for a very long time, and I'm sure it will guide me.

Judith said...

"And after all, who knows but that you might be the one, by your kindness and faith, to give us the strength to choose life in the face of death?"

I've never met you, never will. In the way you've written about your dying, I'm more alive and my life is richer. Thank-you.

Emylee-Noel Gussler said...

For once I find that words escape me. It is hard to find the "right" things to say to someone who is dying. So, instead
I will tell you what you have given me. I consider myself truly fortunate to have been able to find myself in your classes at OSU. I will miss your classes, your energy, your spirited talks and your sense of humor. Not only did you inspire me to find the passion for literature I thought I lost, but helped me to find strength and determination through my own debilitating health issues. "I might be crippled but I'm not an invalid."
OSU will not be the same without you..not for me. As I read through your older blog posts, again and again, I find that I will not be the same either.

Thank you, for all you have given.

Courtney said...

This blog is a treasure, as is this entry. Thank you for continuing to write.

I had many "professors," but only a handful of them were teachers. Thank you for teaching me and so many others.