On the way to extinction my husband paused. After days of emergency room limbo he lay in a hospital bed, hooked up to noisy monitors. I saw him as both the person he had been and the way station he was becoming. Two years beforehand a car accident had expunged his mind along with his smile. One by one, each bodily function departed, replaced by a tube, until he became the center of radiating projections. His breathing labored, his face contorted by pain, he managed just one sentence when he caught sight of me. “Why won’t you help me?” I couldn’t explain to him that his too meager doses of pain medication were so carefully doled out as a side effect of the opioid crisis. I had to watch as my husband died, struggling for breath and in pain, and believing that no one, not even his wife, was willing to help. It has taken more than five years for me to be ready to write about how those last moments complicated my mourning.
It might make sense for me to mention something about myself. I am a retired psychoanalyst, who has specialized in the study of emotions.(1) Much of my writing has focused on the process of mourning. (2) For more than forty years of practice, I helped others navigate loss. Each of my books has a chapter on what can complicate sorrow, and what differentiates it from depression.(3) While this is familiar territory for every clinician, in part because of my writing, I received many referrals of people going through grief. In my personal life I am also no stranger to loss. Did any of this make a difference, as I grappled with my husband’s imminent death, and his last, forlorn question?
George had many reasons to expect help from me. Before the accident I had been the one to bail him out when he inadvertently landed in emergency rooms, having fallen in the street. Each time, he didn’t want to be carted off, but he was unable to protest effectively. So I rushed from work, signed papers that assumed all responsibility, and rescued him from speechless terror.
For two years after his immobilizing car accident I carefully chose and nurtured private nurses. I shopped for foods he might be willing to swallow. Every night I watched him fade, until I had to look away. I tried to situate in the present moment. Remembering who he had been, who we had been, was unbearable. Realizing who/what he was becoming was even more unbearable. It was hard to believe that the unspeakable present was the best place for my mind and heart to locate themselves.
In his last hospitalization I was reduced to begging. I went from one doctor to another, one nurse to the next, in search of relief for him. When I finally got to speak to the physician in charge of his unit I asked why my husband couldn’t receive more morphine, to ease pain and help him breathe, given that all the doctors agreed he had at most a few days to live. Hoping that mordant humor, or logic, or empathy would penetrate, I asked whether the doctor was afraid my husband would become an addict in those few days left to him on earth. The answer I received, after a recitation of hospital policy, was, “We don’t believe in euthanasia.” I swallowed many replies and walked out.
Luck, and a truly kind social worker, intervened. She told me that if I wanted my husband to die at home I had to act fast. His blood pressure was falling, and if it got too low the ambulance drivers would refuse to take him home because he might die on the way. I was beyond questioning the Alice in Wonderland logic of this. I poured my energy into action, arranging for oxygen and double nursing care at home. Once again I signed papers without really reading them, only half listening to the poorly veiled threats. (“You will just have to turn around and come back here, and there won’t be a bed.”)
My husband died the following day, at home. It is hard to say how much he was aware of his surroundings. I would like to think he was. It might take the edge off the pain of remembering that he died believing no one, including me, would help him.
It has taken five years for me to move toward pure sorrow. Here is where my background in emotion research and clinical practice may color my personal experience. I am accustomed to thinking of mourning as a normal, human response to any significant loss. Of course there are all kinds of losses, of persons, beliefs, hopes, dreams, and so on. Every loss is its own country. But they all have some commonalities, as well. Each of us has what I call a “signature style” of bearing sorrow, built of all our prior experiences with it. No one gets to live a life without encountering grief. That we have this in common has potential for bonding us to each other. While acutely painful, most sorrow is bearable. It is when loss is complicated by other strong emotions, such as guilt, regret, rage, shame, fear, or loneliness, that it is more likely to become unbearable. This brings me back to the aftermath of my husband’s death. Aside from the intense sorrow about losing him, I had to contend with the legacy of how he died.
At first I felt intense sorrow laced with rage. But rage at who, at what? At people just striving to do their jobs, to the best of their ability? People who were trying to stem the tide of patients addicted to pain killers? At a system that discourages granting exceptions to their well-intentioned rules? But, then, aren’t I accepting the legitimacy of “just following orders,” with all the historic bitter connotations of that phrase? Of course I recognize the complexity of decision-making for overwhelmed staff. The pandemic has highlighted the impossible demands on human beings having to witness their patients’ last agonies. And yet my personal experience compels me to ask how we could do better, in individually assessing the dangers and benefits of pain medication, particularly when breathing is labored.
I am arguing for difficulty breathing (and witnessing it) as a unique hell. Any suffering can become unbearable, but I think labored breathing entails a particularly anxious, acute, primitive, helpless horror. Breathing is something most of us, most of the time, take for granted. We need to be able to take it for granted. I don’t think interferences with breathing can be categorized with any other kind of pain or discomfort. It is like nothing else. Its panic is blind, absolute, elemental. I think unremitting pain of any kind can probably trigger something like claustrophobia, if it feels like it will be endless. Pain traps us. But difficulty breathing pins us down. It forces us to focus on the fact that we must do something we feel we can’t do. We are in an ongoing state of emergency. It is the definition of terror. Its cousin is being buried alive, a ghoulish storyline, the stuff of horror movies.
In today’s cruel times, human beings struggle to breathe for avoidable and unavoidable reasons. Some are victims of racial hatred and police brutality. Some have been struck down by COVID-19 and die an agonizing, lonely, labored death. I am asking whether some might be spared the horror of helplessly fighting for that most elemental necessity, the breath of life. And, maybe, some of their partners might be spared the unbearable memory of being asked, “Why won’t you help me?”
Author bio: Sandra Buechler, Ph.D., is a psychoanalyst, retired from practice. She has published six books, most recently Psychoanalytic Approaches to Problems in Living, Routledge, 2019.
Image credit: Kandinsky, Schwarze Linie (1924).
(1) Buechler, S. (2004), Clinical Values: Emotions that Guide Psychoanalytic Practice. Hillsdale, N.J.: The Analytic Press.
—. (2008), Making a Difference in Patients’ Lives: Emotional Experience in the Therapeutic Setting. New York: Routledge.
(2) —. (2015), Understanding and Treating Patients in Clinical Psychoanalysis: Lessons from Literature. New York: Routledge.
(3) —. (2019), Psychoanalytic Approaches to Problems in Living: Addressing Life’s Challenges in Clinical Practice. New York: Routledge.