Vulnerability - a powerful changer of perspectives

by Miriam Garvi

There are many reasons these days to think about people who suffer from serious illnesses and how society handles people who are too weak and vulnerable to look out for themselves. For me, as another September 9th approaches, my thoughts go back to events that happened six years ago, events that taught me that for a system to be human-friendly it needs people who care.

That September 9th was my mom’s 55th birthday. In the weeks leading up to that day, I had been spending the mornings helping my dad finish a book project because he wanted her to see it come to fruition, and the afternoons visiting my mom in the palliative clinic where she had been hospitalized after a small surgical intervention had proven too much for her frail body. My mom’s breast cancer was particularly aggressive, and though she had been undergoing various rounds of post-surgery chemo and radiation, her long-time heart condition was making it very hard for her oncologist to find treatments that her body would tolerate.

Meanwhile, there she was, waiting for us at the clinic, while we picked up the cake, the flowers and the presents – determined to make it feel like a real birthday come what may.

But something was more than usually unsettling. A few days earlier, we had started to notice during our visits that she seemed less lucid, possibly hallucinating. This change took us completely by surprise, as my mom had always been a very sensible and clear-spoken person, even when struggling with intense pain. Now suddenly she was unable to sit up straight, hold a spoon or drink a glass of water. And from the sight that met us that afternoon, it was clear that she was being left by the staff to whatever she could manage on her own, as she mumbled something about having collapsed in the bathroom.

The scene that followed is forever etched in my mind. I found our assigned nurse in conversation with her colleagues as she was preparing some coffee to go with the cake. “So fifty-five will be her last birthday….” Startled by my appearance in the doorway, she fixed her eyes upon me and gave me the following speech: “Don’t you realize that this is it; that your mom is about to die? You need to stop coming here and disturb her, and let her pass away in peace.”

For the remainder of that day, I was unable to hold back the tears. My mom somehow opened her presents, but her mind was somewhere else - somewhere where there were burning fires and cats and dogs running back and forth, but certainly no cake or coffee or birthday celebration. And then visitation hours were up and we left her there for the night, fearing the worst but not knowing.

My mom did not die that night, nor that month for that matter; she did not even die that year. The nurse’s predictions were wrong. But then again, she might not have been aware that the senior doctor in charge at the clinic – an enthusiastic prescriber of morphine patches that had just come out on the market – was overdosing her patient, and that what we were seeing really were the effects of morphine-induced hallucination. My mom did collapse from lack of fluids and sodium/potassium imbalance that were immediately treated once we managed to get her to a real hospital. It came very close, but in that hospital she woke up, was brought home, and we had another five months together.

Five months is valuable time when you know that time is limited…

Doctors, nurses and caretakers – people who deal every day with the sufferings of others – are an invaluable resource to society. The woman who spoke to me at the palliative clinic may not have been a bad person at all; in fact someone who knows her is adamant she is not. But something is broken in society when its weaker members become a hospital bed that will soon be available – and we forget that every number is a person, a human being, who feels, thinks and breathes just like ourselves. I very much doubt that the responsible doctor will have included my mother’s story in her research on morphine treatments. And for a long time I wondered what other patients might have been withering away in clinics, their relatives having been scared off by staff protective of their ‘peace’. It won’t be happening at this particular one, though: its palliative unit was closed down last year, amidst allegations of malpractice that since seem forgotten.

Not everyone knows what it is like to feel utterly vulnerable, to be at the mercy of things that are completely outside of your own control. I am glad this is so. And yet… Vulnerability is a powerful changer of perspectives; things simply do not look the same for the one on the giving and the one on the receiving side. And it is how we deal with the vulnerable which, I believe, defines the character of our society at its very core: is it to be cold, expedient, and for the strong – or humane, empathetic, offering protection for the exposed and care for those who need it?

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