Author with MS Offers her Insight
Multiple sclerosis is one of the worst illnesses I have witnessed. MS degenerates bodily functions, bit by bit, due to a breakdown of the central nervous system’s protective myelin sheaths. Some cases are not too severe, while others are progressive and powerfully destructive.
Some of my clients were bedbound and living in nursing homes in their early 40s due to MS. All used wheelchairs and needed help with personal care needs. This disease usually strikes in early adulthood, just when folks are launching families or careers. Because MS gradually breaks down the body but doesn’t kill, it seems like a life lived in purgatory.
But author, lecturer, teacher, wife and grandmother Nancy Mairs might take me to task for my beliefs. Although she was struck with a particularly severe form of MS in her late 20s, Mairs has insisted on living a fully engaged and active life. When the early symptoms of walking difficulties and extreme fatigue settled in, Mairs was raising two small children, keeping house, working toward an M.F.A. in creative writing and a Ph.D. in English literature, and teaching high school students.
Mairs’ MS was relentless in wearing down her body to the point of needing a wheelchair and receiving personal care from her devoted husband. She has weathered bouts of severe depression, agoraphobia (fear of being in open or public places) and the terror of her husband’s metastatic melanoma diagnosis, among other tragedies. But she’s been relentless in her quest for a “normal” life of family and career, and her travails have not affected her fine mind and indestructible spirit.
Mairs has beautifully woven the effects of these events into her writing. She shares her thoughts on life, cats, parenting, sex, illness, disability, death and much more in books and essays. Her books include “Plain Text,” “Waist-High in the World,” “Voice Lessons” and “A Troubled Guest: Life and Death Stories.”
Mairs has the sort of mind that bypasses conventional thinking and offers, instead, provocative and original ideas. For example, in “Plain Text” she dissects the labels “disabled, “handicapped” and “differently abled.” To her, disabled is vague, generic, and describes any mental or physical handicap. And handicapped “implies I have been deliberately put at a disadvantage, by whom I can’t imagine, in order to equalize chances in the great race of life.” She finds differently abled to be the most irritating of the terms, because it is absurd, euphemistic and describes no one at all. Mairs prefers to be called a “cripple.” She feels cripple is an “honest, straightforward and precise” term that most accurately describes her condition. While she has lost the use of her limbs, she remains wholly capable of contributing to family, friends, work and community. Cripple has an “honorable” history that Mairs can trace back to the 10th century.
Furthermore, Mairs adds, “As a cripple, I swagger.” I urge you to read and enjoy her work.