'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.

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.'"

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

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