A week later, during an ordinary conversation, he lets it slip: “It’s nice to be informal with each other. But I advise you not to become my friend, because soon you’re going to lose me.” He says the words calmly. With serene anger. With a mix of bitterness and resignation. And I stay there, speechless. If there’s one thing you learn quickly in this line of work, it’s to keep quiet when there’s really no way to answer.– Eduardo Berti, “An Ideal Presence”
If you’re looking for a something more stream-of-consciousness that will make you both feel and think deeply about how we die and also how we live, An Ideal Presence will be the perfect book for you. It’s written in bit size sections, each from the perspective of someone working in a palliative care unit in France. The novel is lightly fictionalized based on the author’s actual conversations with those who live among the sick and dying each day.
It’s easy to read this book on a surface level and miss what makes it so profound. All the “short stories” are from the perspective of a different worker in the unit. There are stories from doctors, nurses, nurses’ aides, secretaries, porters, social workers, volunteer readers, and and volunteer musicians. Allow this novel to sit with you, and read it in a way that allows you to think more deeply about what the workers both are and aren’t saying and it can really have an impact.
I am an Episcopal priest. Granted, I am at the beginning of my service to others in this way, but in the past two years since my ordination we have gone through a global pandemic and two tornados and a great deal of food insecurity in my greater community. I’ve sat with many in hospice centers like the one described here. I certainly have my own perspective on the matters at the heart of this novel.
A brief passage on the opposition to euthanasia hit me in a way I didn’t expect. For some context, my grandmother died an agonizingly slow death to a combination of Alzheimer’s, diabetes, and complications from cancer treatments in the 1980s. When I was fifteen, in one of her more lucid moments, she took me by the hand and begged for death, asking that if I could ever give her too much of something or leave something where she could find it, that I do it. Ever since that moment I have been supportive of patients with terminal conditions or great suffering being able to choose the manner and timing of death for themselves. This novel presents a different perspective. The doctor in this instance described his opposition to “compassionate ending of life” because usually once the pain is removed, a patient no longer has the desire to end their life. It’s the suffering that makes the desire to die; nothing else. Once the suffering is removed, patients almost certainly wish to continue living. For this hospice center, physical pain could almost always be alleviated. I don’t agree with the perspective as a wider stance, but it was a perspective I need to be informed on the subject.
Another nurse discusses how most people she knows have never seen a dead person. We have relegated the dead and dying out of our homes, off the center stage of our lives, and we have become so afraid of something we will all inevitably do, that we can’t dare to look it in the eyes. Can we really have a complete awareness of life without also having an awareness of pain and of death?
In another section, a volunteer social worker describes visiting with dying patients in much the same way that a chaplain would. She explains that she doesn’t actually “do” anything. She goes in with no plan, no set pattern or course of actions to complete. She jokes if the patient needs to. She prays if the patient needs it. Quite often, she says nothing at all, but is simply present until the patient no longer needs her presence. If she were to say anything at all that connection would be broken, the opportunity for compassion would be squandered. This is exactly how my visits as a chaplain have often worked. There is so often nothing to say to alleviate pain or make situations better for family members. Sometimes the best thing we can be is present with others in their pain.
I’d love to see this book discussed in clergy clericus settings or in seminary classes. It’s also vital that those who do not minister in religious ways read this book. The more we allow ourselves to consider death, the less we need to fear it.
Bizarrely, he was very polite with me. Maybe because I talked to him sweetly. Maybe because I found a way to make it seem like he was giving me orders Superficial orders, obviously, and simple to accomplish. But it did him good, and it was so easy for me to arrange…
“Can you close the door and come to me for a moment please?” he asked me at last…
“Thank you,” he told me then, in a whisper-thin voice. “Thank you for giving me my dignity back.”
- This book is exactly the right length for its purpose. It’s not too long as to bog the reader down. It is not too short as to be flown through without more than a surface level read.
- The variety of voices and perspectives tells a universal story.
- The author gets out of the way of telling the story. They simply allow us to sit with those who work with the sick and the dying. They don’t use any more words than necessary and do not interject their own “voice”.
- It is up to the reader to find the hope and redemption in this story for themselves.
- There were a couple of instances where I would have liked more detail to a story.
When I hear that palliative care is the unit where people go before they die, instead of getting huffy, instead of explaining more or less patiently that we also treat pain in cases that don’t involve immediate death, I answer in the affirmative, I smile my sweetest smile, I say yes, that’s right, good point, and then I add that you could in fact make the same claim about all the departments in the hospital, any hospital, because, all told, everything worth calling life is just the set of things to do before we die, isn’t it? And that, I can assure you, never fails to make an impression.”– Eduardo Berti, “An Ideal Presence”
- Clergy (of all denominations or religious affiliations)
- Social Workers
- Nurses / Doctors
- Those discerning a call to serve others in some way
- Those who have never heard of palliative care
Books to Read if You Loved An Ideal Presence:
- The Year of Magical Thinking by Joan Didion (check out my review here!)
Let’s Discuss! (Pick a question and drop a comment with your reply!)
- Why does Western culture reject and relegate death and dying to rooms whose doors we can close?
- What valuable lessens can we learn from those who work in hospice settings?
- How can we be an ideal presence for others?
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