'Hurtful and Beautiful': Life With Multiple Sclerosis

More

On the other hand, she is grateful to MS for some things. "I do feel, as I felt fairly early on (I at least felt special) that I have been blessed in a way by having MS, and having some perceptual walls broken down that helped me become more aware of the body's variability and oddness. In other words, instead of doing drugs in college, I had MS, which is quite a trip in and of itself."

Lambeth brings up a dichotomy that she's been interested in for many years: "I learned from the poet Gregory Orr that the French word blesser means to wound rather than to bless, and in Old English, it meant to sprinkle with blood. I like the idea that the wound is the blessing that leads you to create. It's hurtful and beautiful at the same time."

"'Susan Sontag says we shouldn't use metaphors." 

So too has been her treatment, although in this case, the hurtful portion has mostly trumped the healing. Lambeth has been on just about every MS drug there is: Copaxone, each of the interferons, Tysabri, even an anticonvulsive. Since there is no cure, MS treatments are aimed at slowing the progression of the disease. But the side effects of each she tried were ultimately too severe, with one of the drugs regularly triggering anaphylaxis, and another bringing on persistent flulike symptoms. "The thing that helps you is so often the thing that hurts you," says Lambeth, who continues the once-a-month Tysabri infusion and takes an anticonvulsive, mainly to mask symptoms.

One of the undergraduate classes Lambeth teaches is called Literature and Medicine. She tells her class about her condition on the first day, by making an analogy between a neuron and an electrical cord. "Susan Sontag says we shouldn't use metaphors," laughs Lambeth. "But on the first day of class, I hold up an electrical cord and ask my students if they know what the outer coating does and what would happen to the function of the cord if it were gone. Most guess correctly that if the insulation were gone, the cord wouldn't be able to carry the charge very well or at all. And I tell them that this is what's happening inside my body." Like first-year medical students, a few of her students inevitably confide in her the tinglings or aches they've experienced in their bodies, and ask her if she thinks it's anything to worry about. She tries to reassure them (without letting on an inward chuckle) that they're probably OK, but if they're really concerned, to go see a doctor. The students who do have chronic medical conditions seem to find comfort in having a teacher who shares similar struggles.

Whether MS has enhanced her career or held her back professionally is a question with which Lambeth has grappled for a while. "Strange: I don't usually blame my MS for anything, but instead I blame stigma or poor interview performance or the barriers themselves for most of the professional obstacles I have faced. The thing is, I know I'm a good teacher, but the market is tough right now, and I can't teach a large number of classes at the same time, and that does have something to do with MS. I often tell people I am a part-time professor and a full-time patient with 'years of experience.' And of course my writing, which receives so little of my time but means so much to me, is my true vocation."

About ten years ago, Lambeth started experiencing significant vision loss - optic neuritis, a common symptom of MS and the one Lambeth dreaded most, given her profession. "I always thought, 'I'll be ok as long as I don't go blind.' And then I essentially started going blind." After a year of significant vision loss, and difficulty working, her vision did return for the most part. For the vision symptoms she still experiences, she's made some adjustments to help her do her work. It's just another reality of an evolving norm, a reminder for her or for any one of us that, "Physical ability is tenuous at best."

Lambeth continues to adjust and readjust to new normals, teaching, writing, and enjoying life with her husband of 12 years. She underlines that for any person, the struggle is always to adapt, whether adverse conditions should arise from inside or outside the body; the task may just be a bit more pronounced for someone with MS or any health condition. Old symptoms may haunt Lambeth, and new ones will inevitably arise. "Specters of old flare-ups keep returning at odd moments, and that is part of my new normal. But developing new normals is a huge part of being human -- being alive -- isn't it?"



Special thanks to the National Multiple Sclerosis Society.

Jump to comments
Presented by

Alice G. Walton, PhD, is a health journalist and an editor at The Doctor Will See You Now.

Get Today's Top Stories in Your Inbox (preview)


Elsewhere on the web

Join the Discussion

After you comment, click Post. If you’re not already logged in you will be asked to log in or register. blog comments powered by Disqus

Video

Miami: The Next Big Start-Up City?

How the city became a center for innovation

Video

Video

A Brief History of Romantic Comedies

From The Atlantic's Chris Orr

Video

Life in 'the New Arctic'

A moving portrait of a fading landscape

Video

Video

The Rise of New York City

A fascinating look at Manhattan in the 1940s

Video

What Is Methane Hydrate?

"Flaming ice" is a vast natural energy source

Video

NASA's Time-Lapse of the Sun

Now with epic dubstep music

Video

Shaken Not Tuned: Cocktail Experiments

Can a tuning fork improve a cocktail?

Video

Video

Is He Cheating? A 1950s Guide

'That little blonde secretary from the office?’

Video

New Yorkers: Vintage Vacuum-Tube Amps

Risking electric shock to restore old amplifiers

Video

The DIY Piano-Bicycle

Everybody needs a hobby

Writers

Up
Down

More in Health

In Focus

Photos of Tornado Damage in Moore, Oklahoma

Just In