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STAT

Maria Bustillos | Longreads | September 14, 2016 | 10,049 words

Is there a dietary treatment for multiple sclerosis? And if so, why is the medical establishment ignoring published academic research that started in the 1950s proving it?

Posted inFeatured, Nonfiction, Story

STAT: My Daughter’s MS Diagnosis and the Question My Doctors Couldn’t Answer

Is there a dietary treatment for multiple sclerosis? And if so, why is the medical establishment ignoring published academic research that started in the 1950s proving it?
"Nearly 24 years later and still just that crazy about my kid." Photos courtesy of the author.

Maria Bustillos | Longreads | September 2016 | 40 minutes (10,049 words)

I.

In the first days of 2014, in her senior year at Oberlin and just a few days before the winter term she’d arranged to spend in France, my daughter Carmen’s legs went numb. First her feet got all tingly, then her ankles, calves, and knees. Over three days or so, the numbness crept up to the base of her rib cage, and then stopped. But it didn’t go away—a weird sensation all in her skin, almost as if the whole lower half of her body had been anesthetized. Shingles, the internist told us—really?—okay. The acupuncturist, too, told us he’d been seeing anomalous cases of shingles cropping up in younger people. Carmen seemed to get a little better, and off she went to Paris; the tingling and numbness subsided slowly over the next several weeks, just as we’d been told they would, and the episode faded from memory. But about a year later, they came back again: Not shingles, after all.

Carmen in a hospital bed, uncharacteristically quiet and gloomy, the dark jungle of her curls against slick, plasticky polyester pillowcases. IV steroids, and more and more tests. Legs pretty numb, still. From pregnancy onward, I imagine, most parents harbor a cold little drop of inward fear, even as each day passes peaceful and undisturbed, through birth and babyhood and all the playdates and sleepovers and math tests, rock shows and summer vacations; at any moment, perhaps, from out of nowhere, comes the pounce. Here it is, then. Multiple sclerosis: I didn’t know anything about it really, beyond calamity, wheelchairs, and Annette Funicello. Instant by instant I composed my face and steeled myself as best I could for… what?

For every cliché in the world, naturally. A soul-wracked family, just like the ones you’ll see every day on the Lifetime Channel and the evening news; a brave young person, scared and in trouble; you register a fleeting hope that things will work out for them, in fact or fiction, as you flick to the next station. Now it’s your turn, but you won’t be changing the channel. Can this thing be treated? What is it? How do I discover how bad this will get? Or maybe let me just jump out this motherfucking window this minute, because I’m going to die of the panic alone.  

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