There is awe, beauty, and courage in so many things, and I encountered them at the moment of death of someone who had chosen to end his life before illness and infection took control.
“Jeremy” was one of my synagogue’s members who had, for the last 40 years, suffered from muscular dystrophy.
Dealing courageously with his disease, he became frustrated with the constant deterioration of his body: confinement to a wheelchair; increasing limitations of his upper body; inability to swallow food; and then, 12 months ago, complete reliance on a ventilator to breathe. This most likely led to a recent bout of pneumonia which no antibiotic could conquer.
We watched with great angst as Jeremy’s condition worsened over the last few years. As his rabbi, I felt completely helpless. There was very little else I could offer him, and all we could do was to give comfort.
Jeremy and his wife “Diana” had learned to accommodate the many indignities of his infirmity, but this recent infection placed them at hope’s end. Jeremy was now unable to move his limbs or speak. He could be fed only by fluids, and the incision for his tracheotomy had become distended and could no longer properly accommodate the breathing tube.
The couple realized that the likely result of the current crisis was a certain death from the pneumonia, and only God knew when. What was their next step?
Atul Gawande, in “Being Mortal”, suggests two kinds of courage when dealing with serious illness. “First is the courage to confront the reality of mortality, the courage to seek out the truth of what is to be feared and what is to be hoped…But even more daunting is the…courage to act on the truth we find.” (page 232)
Jeremy and Diana sought courage at this moment in their lives, and they determined to seize control over Jeremy’s limited life path—a control which, according to Gawande, terminally ill people crave—and decided that they would remove the respirator and let nature take its course.
During the afternoon leading up to this procedure, Jeremy and Diana had proper briefings from his doctor. Procedures were explained; consents signed; the bureaucracy satisfied.
In the final hour, Diana and I came back to the hospital. Also in attendance were Jeremy’s niece and her husband, plus two good friends of Diana who had been with her over the years.
Over the unceasing din of his respirator—a constant companion for the last 12 months—we spoke with Jeremy, we sang songs of hope and wholeness (Debbie Friedman’s “B’yado” helped a lot), I offered, on Jeremy’s behalf, the Vidui, the prayer of confession to be said on one’s deathbed, and Diana sat by his side, stroking his emaciated arms and his withered scalp and face. Comforted in this way, Jeremy dozed between wakefulness and sleep, sometimes conscious of the people in his room, sometimes not. Yet when he was awake, he was absolutely focused on Diana’s loving face.
I interacted with Jeremy and Diana as needed, but most of the time they simply did what two people in love would do. They maintained their connection through touch and glance.
At the appointed hour, the nursing staff administered a first medication to relax Jeremy. This accomplished its goal, and he leaned back on his pillow. But he kept his eyes fixed on Diana.
A second injection was given in anticipation of Jeremy’s discomfort when the ventilator would be removed. His eyes remained immersed in the eyes of his wife.
A nurse then removed the tube which led to his tracheotomy. She turned off the ventilator, and the room went silent. Jeremy’s and Diana’s eyes remained focused on one another. I was standing behind Diana and looking directly at Jeremy, and he silently mouthed the words “I love you”. Diana repeated this back to Jeremy. Then Jeremy’s eyes lost their focus, and he was gone.
I cried: in the room, silent tears while we recited Sh’ma and I attended to my rabbinic duties. Later, in the elevator on my departure, I sobbed uncontrollably, and I hoped that no one would enter the car with me. I cried in sadness for a life that was lost, and I cried at the beauty of a love that was strong before Jeremy’s death, and that remained after his passing. I wondered whether I would have similar amounts of courage were I in their situations.
Atul Gawande’s words echoed in my ear: I witnessed today the “courage to act on the truth we find”. For this couple, they understood the reality of their situation, and acted to relieve pain and accept the reality they faced. But the truth of their love for one another seemed a stronger verity, a genuineness that only they could share. At Jeremy’s moment of death, there was courage, beauty, and awe. Would it be that way for each of us as we pass from this world to the next.
Rabbi Jonathan Biatch serves Temple Beth El, in Madison, Wisconsin.