Two Faces of Lydwina

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.

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Laurie

Laurie Clements Lambeth, Author

Laurie Clements Lambeth’s MS diagnosis at the age of seventeen brought her to poetry. Her first book Veil and Burn (University of Illinois Press, 2008) was selected for the 2006 National Poetry Series. Currently at work on her second poetry collection and a book of creative nonfiction about MS, she also teaches in the Medicine and Society program at the University of Houston, where she earned MFA and PhD degrees in Creative Writing. To learn more about her work, please visit www.laurieclementslambeth.com

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    8 Comments

  • marsha   May 5, 2014 7:44 PM
    This piece is to academic to find any comfort or inspiration in ones daily life of managing our lives with MS, our constant companion!
  • Spencer   May 5, 2014 9:05 PM
    Thank you so much for sharing this lesson. Life's plagues and pleasures are fed by language and context; this piece is a welcome reminder of that.
  • Theresa   May 5, 2014 9:06 PM
    Very interesting. I've been diagnosed for four years, probably living with it for six or seven years. Attitude is everything. You can either survive or thrive. I choose thrive, no matter if my legs work well when I wake up in the morning or not. I'm sure that other people talk about "poor her" when they see me limping down the hall at work, and I hate that, but what can you do? Live your life to the best of whatever ability you have, and don't let negativity steal your joy.
  • kwec7744  May 6, 2014 12:06 AM
    Thanks for your
    comments Laurie. As Theresa writes, attitude is everything. You can survive or thrive.
  • Jim   May 6, 2014 9:00 AM
    I avoid "Support Groups" for just this reason. I found that well intentioned people more themselves in defeatist attitudes at worst, or surrendering attitudes at best. To me this felt like a poor approach and one not conducive to a frame of mind that will bring out the positive in me. In deed, we create our own reality by making choices; and the choices were framed by the language we employ in describing our selves. Thanks for this thought provoking piece.
  • Barb Keen   May 6, 2014 11:32 AM
    I liked the Academic setting, as "outsiders" are definitely influenced by language/descriptions of what MS is. We aren't all consigned to a wheelchair or bedcare with our diagnosis of MS.

    Ah, support groups. Please keep searching for a compatible support group for your needs. I was horrified when attending a recommended one, but found it to be woe-is-me and clique-ish, made me feel like an unwelcome intruder. A second group invitation came, with the group named Adapt. This one fits me well, with its upbeat nature. Sure, all of the people there have been in the pitfalls of MS and know the unpredictable struggles we have at times. But members offer suggestions/strategies to go around or work through the problem being discussed. I try not to miss a meeting, as I may need the lift or can offer a lift to another person.
  • Ann Johnson   May 9, 2014 3:36 AM
    Thank you, it is all in how things are said. If I need help I don't need pity. Lydwyna sounds a crazy bird. I'll try most things but I do like my soft, adjustable bed. I'm going to read Laurie Clement's poetry. Inspirational.
  • capitolcarol   Jul 12, 2014 3:32 PM
    Thank you for your comments. I'll have to constantly remind myself that it is all about attitude. The "strive or survive" analogy is mind-blowing. I am, unfortunately, more of a surviving type, but will have to change my attitude to be more positive and think of only today, not tomorrow.