In my college-level Medicine and Society classes I like to introduce my students to the ways language can alter our perception of illness and disability, how terms like “suffering” or “struggling” or “despite/ battling an illness” characterize diseases in ways that make them seem unbearable, not worth living through. After 27 years living with multiple sclerosis, I can safely say just how unproductive that kind of thinking is. There is a lot more living to do.
To demonstrate the tight weave of language with common, cultural perceptions of affliction, I divide the class in half and give each group a different written interpretation of Saint Lydwina of Schiedam, patron saint of invalids and figure skaters, and quite possibly the first recorded case of multiple sclerosis. She lived in Holland between 1380 and 1433. Her MS-like symptoms began shortly after a skating accident when she was a teenager. One account of her story comes from her hagiography in Butler’s Lives of the Saints. The other comes from a study conducted in 1979 by neurologist R. Medaer, originally published in Acta Neurol Scandinav. In my class exercise, each group of students reads one account of Lydwina’s life, discusses it, and then sends someone up to the dry-erase board to draw a picture of Lydwina based upon the description they read. One drawing is usually far more plain than the other, which sometimes necessitates the addition of a red marker to show blood.
As you can imagine, one account is colder, more clinical than the other. One reads more like detective work, organized into sections entitled “Material and Method,” “Results,” and “Discussion,” while the other is far more dramatic. Of course, each serves a completely different purpose: Medaer investigates Lydwina’s symptoms and the course of her disease, while her hagiography portrays her martyrdom and piety through suffering. Although they both rely upon much of the same source material to build an understanding of Lydwina, they each manage to present very different pictures of the same woman.
A major difference lies in the description of Lydwina’s appearance, my inspiration for creating the assignment. I’d noticed that readers of my poetry sometimes imagine, when I write, “spine stippled with lesions,” that bloody sores run up and down my back, not the gnawed neurons deep within. Butler’s Lives of the Saints crafts an even more gruesome picture of Lydwina’s suffering rising to the surface: “Nothing remained of her former beauty, for she was disfigured by a fissure which extended from the top of the forehead to the middle of her nose, and the lower lip became partly severed from the chin.”
This does not sound like the disease that has its own pamphlet entitled, But you look so good!
Thinking less literally, R. Medaer interprets the reference to Lydwina’s “split face” in some of the biographical material as potentially referring to facial paralysis/weakness, symptoms consistent with MS. Both works address Lydwina’s eventual paralysis in both legs and the right arm, her spasms, and her blindness in one eye and light sensitivity in the other. Both acknowledge that she ate and drank less and less, transitioning to softer foods at one point. Medaer links this to difficulty swallowing, while her hagiography depicts Lydwina refusing food and nourishment, living nearly entirely on Communion bread. Both acknowledge that during her raptures, Lydwina’s vision improved. The giant ulcers Medaer clinically interprets as possible bed sores are ascribed greater significance in her hagiography, simultaneously a result of Lydwina’s decision to intensify her suffering by lying on boards (for others’ sins), and also a part of her mysterious, unendurable illness with “revolting symptoms, the full description of which we spare the reader.”
My students who read the clinically distanced study end up drawing a placid Lydwina lying in bed, while those who read her gruesome hagiography often draw a line down her face, bloody sores, a shut eye and a half-open one, sometimes with angels over her bed. We talk about their Lydwinas—inert case study versus horror movie victim—and laugh.
I erase the board, leaving red and black streaks I can’t remove. It’s a start.