Entrances and Exits

by A. Jay Adler on September 3, 2010
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We have no existential choice in the fact or circumstances of our birth. Most people live as if they are similarly without choice in their death. We are so in awe of the nature of existence – the very fact of it, the wonder of it, the awesome mystery of it – that is seems an act of hubris to consider attempting to wrest control from and affect in its end that which we were so insignificantly powerless to conceive or begin. This sense became encoded in religious belief, and there we have been. Life is a gift. But in its worst moments, in the worst cases, it is an affliction to be borne, because – what else is there to do before the prohibition against seeking creative or destructive control?

There is the question of suicide more generally, but that isn’t my subject here. I asked on Monday

3. If you had a degenerative physical or mental disease that destroys your body or your mind, would you suffer it until it killed you, or would you seek to end your own life at a time of your choosing?

E.C. (Esteemed Commenter) Lynn pondered the question, including observation from experience about how many people do not talk about the subject, and then threw it back at me. What do I think?

My thoughts have several sources. First among them is my history of thinking about and encountering death, which I have partly chronicled in my ongoing series of essays titled “Blink”. In part one, I trace my earliest thoughts of death back to a period somewhere between the ages of 5 and 8, at night, In My Bedroom. Part four, In My Mind, matches my own experiences with those of Julian Barnes, who writes about his death obsession in the 2008 Nothing to Be Frightened Of.

Then there was my mother’s death from Alzheimer’s. More specifically, she died of complications of her illness, a virulent staff infection contracted during the last of her several hospitalizations during her years of decline. My mother, Helen, was a very bright woman, who, had she been born of a different background at another time, would have gone to graduate school as I did, and pursued a professional career. As it was, she graduated high school only, raised a family, and only during my childhood, the last of her three children, began a successful working life. Still, her mind was her pride, the source of her greatest successful engagement with the world, and the loss of it, and of her strong personality, was a hell for her.

Over the last couple of years of her life, my mother effectively had no personality, and she had to be fed. She was overwhelmingly anxious, and her anxiety became focused on my father, Mac, and her need for his presence around her. Even though we were paying for nearly full-time nursing aid, we had to devise stratagems to remove Mac from her so that he could get relief without provoking an extreme a response from Helen.

On one afternoon, I sat alone with my mother on the balcony of my parents’ San Fernando Valley apartment, the one they moved to from New York City once all of their children were together in the same city again after twenty years apart. I was facing her, but she gazed off to my left with that vacant, despondent stare that was her visage now. I asked her how she was feeling, not expecting a reply. She said it was like being alone in a vast desert. There were sometimes those surprising moments of communication, to let you know there was a human being inside who was suffering. I stroked her cheek. I’m so sorry, I said.

My mother had never made her feelings clearly known about end of life decisions. I don’t think she clearly knew them. We knew she trusted all of our love for her, and trusted us to make decisions for her. No one, unclear about her wishes, would have advocated anything extraordinary. I do feel confident that had my mother known ahead of time what she would have to live through, she would not have wanted to. When the doctors told us in December 2003 that the infection would almost surely kill her, and that fighting it would only degrade her life further, we brought her home, with hospice care, to die. We thought she would live perhaps a month. She lasted a week. On a Saturday morning, she woke out of her customary confusion and delirium to tell her husband, standing at her side, that she was dying.

“Mac,” she said, “hold me. I’m going.”

We spent the day at her bedside sending her off with love.

As it happened, given the long day, I was alone at my mother’s side at the moment that she died, staring into her face. Moment’s later, my father was beside me. He looked long into the face of his wife of 63 years, and the soft spoken and taciturn man uttered one of the several striking statements he made to me in his life. He said, “I’m not afraid of that.”

My father was completely uneducated. In English he could write his name if left unobserved and without feeling self-conscious. He read, but how much he understood was never clear. His life, begun in rural Ukraine, had been an active life, starting with travel, as a boy with his sister, across most of Eastern Europe, to Palestine and Kenya, with a round-the-Cape ocean voyage before arriving, after seven years, in the United States at seventeen. He drove New York City parkways and expressways the way mountain men navigated the Rockies’ trails and passages. He walked Manhattan streets and wintry beaches for miles at a time. To be physically able and independent was all to him.

In the last year and half of my father’s life, after my mother’s death, we pressed him, with great effort, to accept the help of a housekeeper for several hours a week. But he had always strongly asserted, even while my mother was alive, that he could never live in any kind of assisted living or nursing facility. And he never wanted to be kept artificially alive.

A month before Mac’s death at 94 – when he was still, as he had been for the thirty years after the heart attack that nearly killed him at 64, a three time a week health club rat – he was out to lunch with my brother, Jeff, at a restaurant. He went to the cramped restroom, where another patron, opening a stall door, bumped Mac in the chest. The door fractured a vertebra. Mac was housebound for the next month, and he developed pneumonia. I was in Budapest at the time, on my way to visit the shtetl where Mac was born. I was called home by Jeff. I reached my father in the hospital to find him conscious and able to talk, but with several organs struggling. He was connected to oxygen, and was soon fed by tubes.

A couple of days later, I sat outside the hospital with my sister, Sharyn. We considered the situation. I said to her, Do you know what the worst case scenario is? The worst case scenario is that they manage to keep him alive, and he lives on disabled and dependent, never again able to live the only kind of life he wants. He would never forgive us, I said.

Sharyn spoke to Jeff, who went to visit with Mac late at night in the hospital room. Mac was now heavily drugged and unconscious, but during Jeff’s visit he came to for the last time. He stared up at Jeff. And he shook his head.

Jeff drove home, feeling now that the final voice, the last weight of responsibility, was his. He wept through the night.

In the morning, Jeff called me and told me that Mac’s long-time doctor had assured him that the hospital staff would do whatever we wished. He asked me how long it would take me to get to the hospital. When I arrived, we took some time before asking the nurses to disconnect Mac from his support. Then they left us alone with him, and as we did with our mother, we stroked him, and held his hands, and sent him off with love.

Tony Judt’s recent death from ALS (Lou Gehrig’s disease) was the subject of the link in my question, and what prompted it. About a week before he died, Judt talked from his bed with Charlie Rose. He told Rose that his experience had led him to consider what was the irreducible essence of life for him, and he had decided that it was communication – his ability to communicate with others. Almost until the end, long after he was immobilized, Judt was giving lectures of a kind, and chronicling in The New York Review of Books, in essays he dictated, the facts and nature of his experience.

Maybe if I were faced with an exceptional, unchronicled cause of death I would feel the calling or need that Judt felt. As many of us are wise enough to say about many experiences of life, one will never know until faced with them. But what I saw my mother experience – the loss of her mind and of her very self while still alive – was horrifying. I could withstand, I imagine, as many people do, degrees of physical disability. But to be slowly entombed in my own body only as a passage to death is equally horrifying. Prohibitions against ending one’s own life are meaningless to me. For me, done seriously, purposefully, as an affirmation of what constitutes value in life, and not as an act of despair, choosing at the right time to end one’s life, before an awful or degrading and irreversible deterioration, is the profoundest expression of autonomy.

Knowing the right time – not too soon, while life still has value, but before it is too late to act on one’s own – may be the hardest part. Then there is the decisive moment, the deep culmination of that knowing. Then there are the pills Lynn spoke of, and the long sleep. Or maybe, if one is very lucky, one dies the way my father did, healthy and vital almost until the very end, and surrounded by love.

AJA

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