'Hurtful and Beautiful': Life With Multiple Sclerosis

Poet and teacher Laurie Lambeth discusses her perspective on the ever-changing normals of life with the constant reminder that "physical ability is tenuous at best." 

cord up.jpg (J.F.photos/Flickr)

The fact that Laurie Lambeth's diagnosis of multiple sclerosis (MS) came after only one month -- and after only one "event" -- made it a relatively uncommon one. Most people have at least a couple separate events (symptoms or flare-ups) before they're diagnosed. Lambeth's first symptom, at age 17, was numbness that spread up her left arm and down her body. She had been snapping her fingers to music one day, and the next her hand went numb, a sensation, or absence thereof, which diffused across her left side. As the result of this early onset, Lambeth -- who is now 43, a PhD, and a prize-winning poet -- has lived with the degenerative neurological disease for all of her adult life. How the disease informs her life, poetry, and concept of "normal" is itself a work in progress.

LambethInset200.jpgLambeth, 2012

Despite Lambeth's young age at the time, the diagnosis itself was not particularly distressing. Her neurologist's nonchalant attitude about MS made for a diagnosis that was pretty low-key. "My neurologist said to me, 'think of it as minor inconvenience. Avoid hot tubs. Have a nice life.' That was it. There was no hysteria about it for me because he minimized it so."

That was in her senior year of high school. As the realization set in more, however, Lambeth began pouring more of herself into academics, which had not previously been her driving force (training horses and her involvement in the visual arts had played center stage). "I tried a lot harder in high school after my diagnosis, and then threw myself into college," says Lambeth. "I thought that if I could no longer count on my body, I could at least rely on my mind. I didn't know that my cognitive abilities would change, that following and synthesizing a number of strands of discussion would come less easily, or that remembering simple words would be much harder for me than for others my age."

Despite the physical and cognitive challenges of MS, Lambeth went on to get her BA at Loyola Marymount College and then her MFA and PhD in creative writing at the University of Houston, where she teaches now.

In many ways MS informs Lambeth's work just as its presence throughout her adult life has informed her relationship with her own body and with the world around her. "Since I couldn't feel the difference between fabric and a hand on my leg, I began to see the world more abstractly," she says. So Lambeth began creating metaphors - privately, at first, as an outgrowth of her personal experience, and then on paper, to express it to others.

"'Okay, you can stop it now, I get it,' I want to say to my body." 

Lambeth's work has appeared in the Paris Review, Crazyhorse, and the Mid-American Review. She has also published a book of poems and "fragmented" prose, Veil and Burn, which won a National Poetry Series award in 2006, and is working on a second.

Much of her writing explores the relationship between the self and the other, and even how we may experience sensation through another. Some of her poems articulate the physical sensations of MS, even the numbness, which she describes as a presence, an entity in its own right. Pain, she says, on the other hand, is virtually impossible to convert into words effectively. She also doesn't particularly want to invoke pity in her reader. 

Finding a new normal has been an ongoing theme in Lambeth's life and work. "I have to say that for the majority of the time I have had MS I was under the impression that relapsing-remitting meant that my MS would never progress. I was wrong, clearly. It gets harder and harder to recover from a flare-up and get back to normal. Normal itself keeps shifting, and the area I can walk has shrunk." Exacerbations, or flare-ups, may occur during times of stress, or randomly, and the recovery may not be so complete as it once was, making "normal" an ever-changing concept.

"My early impression that relapsing-remitting MS would remain so," adds Lambeth, "on an even course of ups and downs and miraculous recoveries, has since been trumped by the degenerative nature of the disease, something I never thought would happen to me. What that disillusionment did to me was simply to make me value uncertainty over full-blown positivity, and to acknowledge that nothing in life is ever certain, explainable, or permanently and easily defined."

One thing Lambeth doesn't do is sugarcoat her experience. Living with MS for the majority of her life has in some ways lead to certain benefits - psychological depth and, perhaps, professional accomplishments - but she isn't universally thankful for her condition. "The grief I feel occurs when I develop new symptoms, or when an exacerbation sticks around for many months. Ideas of permanence within the flux of my MS haunt me at odd times. 'Okay, you can stop it now, I get it,' I want to say to my body. 'That's enough.'"

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.

Presented by

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

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