My Gut Feeling About MS

Security is mostly a superstition. It does not exist in nature,
nor do the children of men
as a whole experience it.
Avoiding danger is no safer
in the long run than outright exposure.
Life is either a daring adventure, or nothing.
–Helen Keller

Once upon a time, I was a wholesome, healthy, teenage girl. There was nothing I would rather do than backpack with my family in the forest, and nothing I would rather drink than pure, rushing river water.
Little did I know that nothing in nature is pure.
I discovered early on in our family’s backpacking adventures that the appearance of water is deceptive. I had only to fill my canteen to learn that water, while as clear as air, is nowhere near as light as air.
I should have figured right then that there is more to water than meets the eye. But I didn’t. I didn’t understand that water, essential water, delicious water, could kill me. The water from the streams tasted so much better than the water from the tap. How could it not be better? Purer? Safer?
Instead of following that old backpacking mantra, Take nothing but photographs, leave nothing but footprints, I took home a bellyful of worms I’d sucked down with that pure, rushing river water I’d found so delicious. Once those worms found their way into my digestive track, they began to wreck havoc.
Those little squatters would devour over three month’s worth of progressively blander breakfasts, lunches and dinners. Every one of “my” meals would be followed by violent, punishing diarrhea.
Life with these new parasites was ugly. Really ugly. In the course of three months, I was reduced to a (barely) living skeleton. I had to drop out of school, and rely on visiting tutors. As I became progressively weaker, I would have to send my tutors home early; sitting up for more than fifteen minutes at a time became too strenuous a challenge.
At one point during the parasitic occupation, I had a nasty reaction to an antibiotic. My esophagus contracted. I did not like that sensation. I thought I was having a heart attack. I remember my dad driving me to the hospital, reaching 50 miles an hour in a 35 mph zone. I was touched by his efforts, but I found them unnecessary. I’d had a nice life, if a short one; a loving family, gorgeous scenery, delicious water. I was ready to die.
In a less developed part of the world, I probably would have died, if not that day, then soon after. I certainly would not have reached adulthood. But as it happened, my dad was speeding me toward the teaching hospital at Yale University. The hospital would eventually connect me to an IV to boost my nutrition. They would treat me with an all-purpose parasite-killer. I would survive. The worms would die.
It was a real Ivy-league outcome. A victory.
The odd thing was, even after the parasites were killed, I never felt fully recovered.
I would live to adulthood, but it would be an adulthood with multiple sclerosis, a degenerative, debilitating autoimmune disease. Was that better than the alternative?
You bet.
Back when I was ready to die, I’d had no idea of all I would have missed. Instead of feeling serene, I would have felt really sorry for myself. Life is good. Even life with MS.
If you’ve been paying attention, by now you’ve probably reached the following conclusion: worms are bad. That was my assumption, too.
Imagine my surprise, then, when my friend Martin, a neuroscientist, sent me an article from The Annuals of Neurology, Association Between Parasite Infection and Immune Responses in Multiple Sclerosis (1), which observes that in the battle against multiple sclerosis, worms are…good.
The study compared multiple sclerosis patients who had naturally occurring parasitic infections to multiple sclerosis patients without parasites. The patients with parasites showed significantly less neurological damage over the course of four and a half years than the patients without parasites. Apparently worms are good for something. They keep autoimmune malfunctions in check.
At first, I resisted this data. I’d hosted more than my fair share of parasites. Those nasty little worms hadn’t kept me from contracting multiple sclerosis. But on second thought, I realized I hadn’t been a very nice hostess; I’d served up some heavy-duty all-purpose parasite killer. All the creatures living in my gut, good worms or bad worms, had been effectively wiped out.
Until I read the article, I never thought that was a problem. But now I do. This is why. Human beings have been co-evolving with parasites for millennia. It’s only recently that we’ve acquired the ability to produce heavy-duty all-purpose parasite killers like the one that saved my life. And it’s only very recently that we are beginning to realize there could be a trade-off. Tiny studies of disparate autoimmune diseases are all reaching the same conclusion; the immune system is regulated by the worms in our gut. (2)
Epidemiological data supports these findings. There is almost no incidence of autoimmune diseases like multiple sclerosis in the developing world, where modern standards of hygiene have not yet impeded on the dark, fragile ecosystem we prefer not to discuss in polite company. (3)
Biodiversity may be endangered in an ecosystem we rarely stop to think about. (4) This may have far reaching consequences for our health.
As I learn more about the immune protective function of microscopic intestinal life forms, I have come to regard that heavy-duty all-purpose parasite killer I took so many years ago as a blunt weapon; a weapon of mass destruction. It may have spared my life, but by wiping out the diverse life forms in my gut, it may also have incidentally left me vulnerable to developing multiple sclerosis.
I am grateful that I didn’t die that long ago day when my father rushed me to the hospital. Dying very young and very thin is still the only option for far too many children in undeveloped nations. This remains unacceptable. But can we offer a better alternative than a longer lifetime with a debilitating disease?
I think those of us in developed nations should pause to investigate whether we have been trading one set of diseases for another. I expect we can find a third way; a way to preserve and/or reintroduce those worms that have co-evolved to boost our immunity.
A few bold researchers are investigating this option. The National Multiple Sclerosis Society is funding a study in Wisconsin to measure the safety and effectiveness of helminth (worm) therapy.

This research gives me a lot of hope. We still know so little about Multiple Sclerosis; it’s encouraging to see work being done that has potential to address a cause. I have a gut feeling that they are on the right track.


Further reading:
Do worms protect us against autoimmune diseases? The epidemiological evidence is strongly suggestive.
Helminthic therapy, a type of immunotherapy, is the treatment of autoimmune diseases and immune disorders by means of deliberate infestation with a helminth or with the ova of a helminth. Helminths are parasitic worms such as hookworms and whipworms.

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Fiction: Flatten the Hills, Inflate the Valleys

This short story of mine was published in River Styx. It has nothing to do with multiple sclerosis. I wrote it back when my fingertips tingled painfully every time I used a keyboard. ‘nuf said.

Flatten the Hills, Inflate the Valleys
BEING LOST gives Tanya a real thrill. She’s told me that, and I’ve heard her say the same to others. I’ve heard her tell the truckers she gets herself deliberately lost, that when she finds a street she realizes she’s never been down before, and she suspects she doesn’t know where it ends, certain fluids are secreted by certain glands, and she’s off, cutting through four lanes of traffic if she has to, so she can take that mysterious left. And if that street leads to another unknown street, her tires will squeal with delight.
The truckers tell her how they like their eggs: sunny side up, scrambled, over easy, over hard. She tells them how she likes her streets: curvy, diagonal, irrational, inexplicable, illogical. She says that she despises the dead end, the parallel, the numerical. And how there’s nothing more disappointing than a hint; the east, north, south, and west streets, roads, concourses and boulevards.
Some of them ask her, you from around these parts?
These parts are upstate New York.
Hell no, she says. And I’m cutting out of here just as soon as I can’t get myself lost no more.
Tanya puts a little Dixie lilt into her voice when she’s really going for a tip. Those times her voice gets sexier than any wag of the fanny. It drives Rhonda, the other waitress, crazy, and not with desire. Tanya might’ve gotten lost in a lot of places, but by her own admission, she has never wound up in the South.
I’m the busboy at the Big Eats. Invisibility is my job and my vocation. When Rhonda gets too irate from hearing Tanya’s manufactured accent, I duck under the counter and collect another plastic tub of filmy dishes so I can dodge Rhonda’s eyes, indignant irises purpling with rage, pupils pursuing confirmation from mine that indeed, this time my beloved Tanya has gone too far.
What Rhonda would’ve known, if she really listened to Tanya’s stories, is that Tanya can never go too far. This is Tanya’s nightly lament. There is no moment more dreaded than the inevitable recognition of a flagpole, the sudden emergence of a tattletale water tower, or the blunt intrusion of an interstate highway on some windy, dusty, no name road. Her mind immediately constructs a line between two points: the offending flagpole, water tower, interstate, or what have you, and her own driveway. This line, however crooked it may be, has a beginning and an end. Her brakes squeak with humble acquiescence, her turn signal clinks with disappointment, and she’s on her way home again.
Sometimes Tanya visits me while I load the dishes. Other waitresses have tried that in the past, and I’ve scared them off by singing portions of the Faust opera in my most strident baritone. Tanya doesn’t scare as easy, so I let her stay. We’ll share the serenity of the steam until Rhonda hollers that Three is up, or Danny, that’s the owner, walks by one too many times, saying nothing. Tanya likes the dishroom, likes to hum along with the deep, solemn lullaby of the dishwasher. She even likes to peer through the greasy diamond shaped window to the front room. I think she understands how this dishroom shelters, even nourishes me.
I asked her once, why not just ignore the landmarks, drive on, and get lost again?
She shook her head, and said nothing. I could have told her the answer. For Tanya, to be lost is to be under the delicious spell of the unknown. With the invasion of the known, the spell is broken.
Tanya has lived here for almost three months. I don’t know how long it will take her before she’s exhausted her possibilities, before each mark will become a landmark, and it will be time for her to move on again. I want to smear paint over every street sign. I want to bend the rivers for her, flatten the hills, inflate the valleys.
When I first moved to this village, two years before Tanya’s arrival, I fell hard for Rhonda. I’d picked the location at random, and brought nothing with me but my weights, ten crates of books, my VCR, and 300 or so videos. No family photographs, no letters, no address book. The first place I went was the Big Eats, and Rhonda was the first woman I saw. I was after her body, I admit, those hard, bulging calves, that powerful ass of hers, those upright breasts causing such delightful tension in her stiff uniform. I filled out my application, all three lines – name, phone number, and felonies – while fantasizing about loosening Rhonda’s lustrous black hair from her rigid bun. I wasn’t after her to marry her, or even to talk to her. I just wanted to be able to watch her walking around in that tight, starched uniform of hers. Honest.
Tanya, on the other hand, isn’t much of a looker. She’s kind of dumpy, her butt sags, and she’s got a gap between her two front teeth, upper row. She doesn’t wash her hair too regularly, and it separates and dulls after a time.
There couldn’t be two waitresses more different than Rhonda and Tanya. They’re both top–rate; it’s a difference of style. Rhonda’s down to business. The regulars prefer her, because she always knows exactly what they want, will get it to them nice and hot and with no fuss, will ask them about their families if she likes them, will let them be if she doesn’t. She’ll reject a plate at a glance if she can tell that the yolk won’t break when they expect it to, and inform the cook how many seconds the eggs have left on the griddle. No one ever has to send back a plate, if Rhonda’s got them. People like that. And of course, she’s got a waitress’s best asset, as I’ve mentioned before. The rule with Rhonda is, look but don’t touch. People like that, too. Contemplating trouble is an end in itself.
Tanya works the other side of the spectrum: the clientele who come, not for the perfect, predictable egg, but for nourishment of the soul. An order will sit cooling on the hot plate in the time it takes to see all 14 wallet photographs of an out-of-towner’s grandchildren, as Tanya croons, why he’s got your eyes, doesn’t he, or, look at that wide forehead, it’s a sign of sensitivity, I hear. But no one in the restaurant will care, because pretty soon they’ll be gathering around to see those pictures, too, and to pull out their own. And if there’s some person left untouched, unconcerned about Bernie’s mother-in-law’s mastectomy, or whatever the topic of conversation may be, Rhonda will detect their dissatisfaction, even if she’s facing the opposite direction, like she’s got eyes staring out of her fastidious bun, and she’ll pick up their neglected plate, throw some extra slabs of bacon on it, and bring it right over. And while it’s true that, in tangible ways, Tanya leaves a lot of slack for Rhonda to pick up, it is beautiful slack, because it is slack created by something no less than love itself.
I ask Tanya, so what does it feel like for you, when you’re lost?
Her dimples enfold her face with bliss. It feels…her eyes squeeze close as the sensation overcomes her. It feels…her face flushes. Oh gosh, I can’t even tell ya, she says, though again she tries. It feels like…instead of words, a tiny little squeal emerges from her throat, or somewhere even deeper. She turns her head away, embarrassed. It just feels good, all right?

Rhonda called in sick one night, a slow night, the night of the big thunder storm. I’m shy around Rhonda, always have been. The sight of that fine behind of hers just silences me. With Rhonda out of the way for once, I could finally approach my beloved one, without fear of attracting any ridicule.
Tanya smelled wonderfully musty that night, like rain and dirt and leaves and grass, as if she’d been permeated by the storm. The travelers lingered, waiting for the rain to let up, and they shared anecdotes and revelations as Tanya poured them third and fourth cups of coffee. I hung back in the dishroom, like I always do, even though we had yet to accumulate a full load of dishes. I’m afraid of the front; I am looked upon with suspicion there. The truckers know I’m not their kind, and are unsure of whose kind I am. I kept the radio off and hovered by the doorway, listening, waiting for a chance to be alone with her, to make my proposal. Finally, she came out back to restock the sugar and the Sweet’N’Low.
I asked her, and even though it came out sort of hoarse and wobbly, she understood right away.
Why of course, I’d love to come to your place for dinner sometime, honey. Just name a date.
Sunday was the only night we both had off. I spent the rest of my shift constructing directions for her. I live off a ways from the Big Eats, out on an unpaved mountain road. It’s easy for folks to get lost, trying to find me. That’s what I would guess, anyway.
The next couple nights were torture. I kept trying to read Rhonda’s face, to see if Tanya had told her anything, but Rhonda’s face was as fixed and hard as stone. This was her usual demeanor, but I wondered if now it meant something. I didn’t dare search Tanya’s face. I didn’t even make eye contact. I held my breath every time I passed her, and concentrated on keeping my hands nice and steady, so I wouldn’t break any dishes. She asked me once, something wrong, honey? I said, no, nothing, and slipped away to the men’s room to get sick.
Sunday night has now arrived, and Tanya is two hours late. It’s working out just as I planned. I am standing by the window, savoring the moment. In my mind, I see the nearby roads that wind and twist and, thankfully, circumvent the road to my house, and I see them as she must see them, as mysterious, devious, terrifying, ecstatic. I turn each corner with acute anticipation, switch on my brights for the deserted stretches, search for the fictional signposts, driveways, dead ends, deaf child signs I have myself invented, for Tanya, for my love. I feel myself jolt on the potholes, feel my eyes strain with effort, and feel, yes I think I’m really feeling it now, that sensation Tanya had no words to describe. It is building up in me, overtaking me. I am lost in bliss.

It’s All in My Head (or maybe my spinal cord)

My neurogenic pain has always been a mystery to me.

I first felt a tingly sensation in my right foot during stop-and-go traffic in rush hour. I attributed the unpleasant feeling to an ill-fitting shoe. Except… my shoe fit fine. And why was I tingly only in my right foot? Why not my left? Who ever heard of going all tingly from pumping the gas and the brake?

I asked these questions of my boss, because my boss used to be a nurse. I figured she’d know what it meant. In retrospect, she probably did know what it meant. That must have been why she fired me.

The next time I asked about a tingly sensation, the story was even weirder. My fiancée had been reading me poetry in the bath, when suddenly that tingly sensation shot right up to my bra line. When I tried to get out of the bath, I dropped like a rag doll. For no apparent reason, I couldn’t walk. My guy had to help me to bed. In the morning, I was just fine. Why had I been tingly in the bathtub? Why was there that scary moment when I couldn’t walk?

The community health center doctor countered with questions of his own. Was the bath warm?

Of course the bath was warm.

Do you have insurance?

Was I in a community health center? Of course I didn’t have insurance. I’d just been fired.

The doctor wrote me a prescription for B vitamins. “I’m going to be very careful with how I write this up. I’m going to say you have a vitamin deficiency. You don’t want a pre-existing condition. When you do get a job with insurance, you’ll want to go to a neurologist.”

Did I want to go to a neurologist?

I guess I didn’t. That discussion took place in 1990. Even with health insurance, I didn’t make it to a neurologist until 1995. In the intervening years the funky experiences with pins-and-needles sensations kept piling up. There was no apparent explanation for my pain. All I knew for sure was that it wasn’t caused by a vitamin deficiency. Taking B vitamins hadn’t done a thing.

What drove me to finally see a neurologist? Sheer curiosity. It was weird, just plain downright weird, to experience pain without any apparent cause.

Once again, I told my story. This time, I would get an explanation in return. There were measurements I’d never dreamed of that revealed symptoms I thought could never be quantified. The pain I experienced in my legs did have a source. Multiple sources. My MRI showed lesions in my brain. My lumbar puncture showed lesions in my spinal chord. Oddly enough, the doctors could tell I felt tingling in my legs because of what I couldn’t feel; vibrations from a tuning fork.

It was all very validating, these proofs my pain was real. Not so long ago, a person like me would have been labeled a hysteric. Instead of being labeled a hysteric, I was diagnosed with multiple sclerosis. That’s progress. But at the end of the day, and more often than not, at the beginning and middle of the day as well, I am in just as much pain as my predecessors, the hysterics.

I’ve had enough. I am ready for more progress. Science has determined that my pain is real… by now science ought to find a way to get rid of it.

A few weeks ago, I happened to click my way to a four minute TED talk in which a researcher proposed to do exactly that.

Christopher de Charms uses the MRI to do more than document the existence of pain; he has his clients climb in the scanner with virtual reality goggles, and interact with their pain in real time. They can select the portion of their brain lighting up with chronic pain; and apparently they can be trained to release their own opiates to counteract it. By controlling their brain, they control their pain. DeCharms reports a 44-64% decrease in chronic pain patients. I want in, unless that means I will be decreased by 44-64%.

There were many issues a four minute TED talk can’t cover. I wondered if seeing a portion of my brain light up with pain would in fact make my pain more pronounced. And once I did see which part of my brain was active when I was in pain, how, exactly, would I release my opiates to sooth things over?

To pursue the matter further, I ordered and read DeCharms1998 book, Two Views of Mind: Abhidharma and Brain Science. In each chapter, DeCharms chats with Tibetan Buddhist teachers to deepen his understanding of the mind in Buddhist philosophy. I can see how his research of their study of mind led him to attempt to transform the Western study of the brain. Buddhism is based on systematic observation of the subjective; for generations, Buddhists have been observing the mind from the inside. As a practitioner of western science, DeCharms has access to the technology to visually access the inside of the brain; he recognizes that the Buddhists have the skills to know what to do once you’re there. From what I’ve learned in DeCharms’ TED talk, this appears to have been a fruitful collaboration.

I will be the first to admit that the pain I experience is not at all useful. It’s a misfire. My brain (or my spinal chord) is screeching PAIN PAIN PAIN. I’d love to teach it to sing a different tune. If crawling inside an MRI machine while wearing a pair of virtual reality glasses can do that, I want to give it a try. I value western medicine for proving my pain is real. I’m more than willing to value eastern medicine if it can help me make that pain go away.


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One of the least attractive aspects of having multiple sclerosis is that it has turned me into a bit of a princess.

When I was a little girl, I never wanted to be a princess. I didn’t think it was any luxury to be dressed by a flock of ladies-in-waiting. I haven’t reached that particular stage of princessness…yet. But it could happen. The other night when I was in pain, my husband got a bit over-solicitous, and pulled a sock over my decidedly un-Cinderella-sized foot. I said, “Let’s not make this a habit.” I thought that would stop him cold. His eyes widened in horror. Then he picked up the other sock.


Am I a princess? I can not bear to stand in line. Now you’re going to hate me. Who doesn’t hate those princesses you see at the grocery store who hiss and flare their nostrils if the person in front of them pulls out food stamps, or, heaven forbid, roots around their pockets to furnish exact change? I promise, I’m not that kind of princess. The hissy type. The type who berates the slow moving cashier. But I tell you, a slow moving line sends me into a panic, a crisis I try my level best to keep to myself. Standing, simple standing, is an arduous task for me. The longer I stand, the more painful it gets. What starts off as a tingle in my legs swiftly escalates into something like a burn. If you’ve ever been tickled too long, you might begin to get the idea.

I know. I know. That seems kind of strange. Welcome to multiple sclerosis.

Am I a princess? I don’t clean my own house. Now you hate me. I do the light cleaning. I do the family wash. If my husband makes the dinner, as a rule I do the dishes. Unless, of course, my husband has made the dinner because I’ve had a rough day. On those rough days, I get out of the cooking and the dishwashing, while he is stuck with both. My husband picks up my slack. But he doesn’t pick up that much around the house. For that, and for the deep cleaning, we turn to M., our housekeeper. M. is extremely non-judgmental. I have never, ever, heard her trash-talk our family for our slovenly ways, like I do when I’m the one cleaning up. She would never say, as I said this morning, “A dirty thermos? In your sleeping bag? Really?” She just goes about her business of cleaning our house, and lets me go about my business of undoing her good work. M. does this work because I find it too fatiguing to drag a mop across the floors, yet in all the years she’s worked for us, she’s never once commented on how strange it is that I summon up enough energy to pop over to Y to lift weights.

What M. does is the real heavy lifting. On those weeks when M. can’t make it, and I’m the one to clean the house, I only last about 40 minutes before my legs start buckling beneath me. Add just about any commercial cleaning solvent to the equation, and I’m as dizzy and wrecked as a high altitude climber who forgot to tote the oxygen. When M. returns the following week, I’m as happy to see her as my salivating dog. I apologize for the mess I’m too gimpy to clean. Then I get in my car, and I drive off to the Y.

So, to recap: I don’t stand in lines. I don’t clean my own house. Now let’s add the most princessly feature of all…can you guess?

I don’t work.

Not to make money, anyway. Now you hate me. You work. And work is no fun. I know that. I worked once. I was working three jobs and going to grad school when I was diagnosed with multiple sclerosis. I never made very much money. I made so little, in fact, that I really resented that chunk that came out of my paycheck to go to Social Security.

These days, the only work I do is fun stuff; I write, and I help other writers write. I touch no filthy lucre. Like any princess, I have my favorite charity. All the proceeds go to the arts center down the block. If I’m too much pain, I cancel, or I postpone. No one is the wiser. No one is my boss.

I am a princess. I have to live by a separate set of rules. I don’t stand in lines, I don’t clean my own house, and I don’t work for money, just for fun. There is nothing about multiple sclerosis that is fair.

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