Lots of physical sensations resist language. Pain, perhaps, most of all — there’s just no way to capture, in words, the physical sensation of pain. And the more textured that pain is, the more drawn out and complicated and isolating it is, the more it escapes language.
Alzheimer’s disease is an extreme example of this. The condition entails what could be seen as the ultimate sort of pain — the pain of feeling yourself slip away. In a fascinating new article published in Literature and Medicine, Martina Zimmerman, a longtime pharmaceutical researcher who also holds a Ph.D. in health humanities, surveys the various ways Alzheimer’s patients, and the loved ones and caretakers who have helped tell their stories, have conceived of the illness and its inexorable progression, and how they’ve attempted to capture it via the use of metaphor.
As Zimmerman notes, the language and metaphors we use inevitably shape how we view the world and the people in it. If we speak and write about Alzheimer’s as though it’s an overwhelming juggernaut crushing its victims beneath it, that could have the effect of stripping Alzheimer’s patients of their agency and dignity. On the other hand, if we focus too intently on the resilience of Alzheimer’s patients and what they learn about life and love during the part of their “journey” in which they are still fully capable of learning things, we whitewash the truth, which is that this is a disease that kills people in a slow, terrible, dehumanizing way.
There’s no “solution” to this linguistic problem, of course. Different writers have taken very different approaches. In Jigsaw: Diary of an Alzheimer’s Patient, for example, Claude Couturier lamented with dark humor that “they will surely come to throw me away like a sock full of holes,” and that “I will be a grilled vegetable.” Others, naturally, don’t describe their situation with humor. As Diana Friel McGowin put it in Living in the Labyrinth: A Personal Journey Through the Maze of Alzheimer’s: “The Alzheimer’s patient asks nothing more than a hand to hold, a heart to care, and a mind to think for them when they cannot; someone to protect them as they travel through the dangerous twists and turns of the labyrinth.”
Again, the point here isn’t to argue that one way of describing the indescribable is better or more moral or accurate than others; the point is to explore what it even means to try. Zimmerman’s article does a really nice job of that, and is worth a read.