Saving Face

“God has given you one face, and you make yourselves another.”
William Shakespeare
Act 3, Scene 1 of Hamlet

I knew I was in trouble before I opened up my eyes this morning. I could feel that my eyelids were swollen before I attempted to wrench them apart. A trip to the mirror confirmed what my senses implied. My upper eyelids were elephantine. Worse, there were tender red patches beneath each eye. Worse still, tonight I’m scheduled to sit in front of a hundred or so paying audience members with a spotlight shining on this problematic face. Worst of all…it’s kind of my fault.
I write, “kind of,” because last night, when I applied my makeup, I hadn’t realized the potential for this consequence. I write, “my fault” because my neurologist had given me the opportunity to take an all-expense paid trip to the National Institutes of Health, (NIH) in Bethesda, Maryland, and get my rash seen by a dermatologist there. At the last minute, I’d chickened out, and had the NIH cancel my flight, because on that particular morning, my skin didn’t look so bad, nothing a little concealer couldn’t fix. I couldn’t stand the thought of flying all the way to Bethesda over a couple of little scaly patches that could be covered up with concealer. Believe it or not, I thought I was saving face. I couldn’t stand the possibility of being regarded as a hypochondriac.
Yeah, right. That hypochondriac option has been out for decades. Who did I think I was fooling?
I’m going to have to back up a bit. I’m going to have to be straight with you about a thing or two.
Starting with this: I set up this blog to share my experiences on an experimental medication for multiple sclerosis, DAC HYP. It’s only now that I notice that I’ve underplayed…as in, possibly haven’t mentioned…that I’ve experienced a side effect. That side effect is rash.
You might well ask, why not?
Here’s why not. I’ve got multiple sclerosis (MS) a horrible, and so far, incurable, degenerative neurological disease, and DAC HYP is the only medication I’ve taken—and I’ve taken plenty—that has actually served to stop the disease progression.
That’s pretty significant.
Rash? As side effects go, rash just hasn’t seemed that significant.
To put it into context, a potential side effect for a competing drug, Tysabri, is sudden death. So, yeah—rash. What of it?
I’d rather have a rash I can see than a brain lesion I can’t see. The choice to take the medication, and bear with the side effect, has been a no-brainer, at least for me. For a while there, I thought that anyone who saw things differently must just be more brain damaged than I am.
Two things have happened since I’ve started this blog that have changed the way I view the risk/benefit analysis of taking a drug that stops MS, yet causes rash.
Thing One: after years and years and years on this drug, I finally did get one—and only one—new brain lesion. And still, as far as I can tell, that’s a phenomenally good result if you compare the efficacy of this drug to that of any other MS drug out there. I’ve been told this one lesion had the good grace to show up in a “silent area.” I don’t agree that the damage was silent—I felt pretty horrible for a while there—but in truth, I’m feeling all right now.
Except for—
Thing Two: the rash has gotten worse.
Way worse.
When the rash first showed up—I believe that happened around the time the medication changed its formulation—it appeared on the inside of my hand; a nice, innocuous spot. No one was too likely to see it. And that was important to me. Some people call MS an invisible disease. I like it’s invisibility, thank you very much. MS only stays invisible if it isn’t allowed to progress.
The rash itched. I applied hydrocortisone. It went away. And then the rash reappeared, on my face of all places. A place everyone was likely to see. And that made the rash something I had to…um…face.
I managed to not face it.
I had a solution. I used a cosmetic. A simple concealer. Perhaps if I were a man, and not in the habit of putting on makeup, that move would have felt like a big deal. But I am a woman. Most of us women are all too familiar with, shall we say, putting our best face forward. (See: Hamlet.)
So yes. I wore concealer over my rash every day. Even on those days the NIH flew me out to examine me, to, you know, see if I was experiencing any side effects on DAC HYP.
Maybe we’ve been at cross-purposes. Whenever I visit the NIH, I always strive to be mistaken for a doctor instead of taken for a patient. My most treasured moments in Bethesda are the times I (almost) get away with this, like when a driver for the NIH picked me up from the hotel and asked, “Are you a patient, or…”
I treasured that “or.” I gave that driver a big tip.
The NIH culture supports these seemingly innocuous mistakes of identity. A nurse once berated herself after she’d asked me a question about my condition in an elevator. “I shouldn’t have done that. I’m not supposed to address you as a patient in front of other people.”
I’m not to be treated like a patient. I’m to be treated like a peer. One never gets too personal with one’s peers. I’ve had one neurologist actually apologize several times during an examination, for having to touch me, for asking me to disrobe. I understood she was expressing her respect for me. But that sentiment can go too far, and actually disrupt the messy process of getting down to the ugly truth.
And it’s hard to get there. For instance, you’ve been reading paragraph after paragraph about my rash, and I still haven’t mentioned I also have scaly dry patches on the inner folds of my arms and my legs. These patches itch. But I tend to forget to mention them, not only to you, but to my neurologist. Why? Because these itchy patches are not visible to others, at least not in the winter months. I can bear almost any amount of discomfort. I just can’t bear exposure.
Which brings me to the prospect of going onstage with a rash in front of about 100 people.
I’d had other plans for this evening’s appearance. I’d planned to get a professional make-up job. I’d planned to get an elaborate up-do. I’d planned to look fabulous, like I did on opening night, just a few hours after I made that cancellation.
Life doesn’t always go as planned
When I’d cancelled my flight to the NIH and my appointment with the NIH dermatologist, my neurologist had suggested I quit wearing make-up. After opening night, I complied. As of last night, my face was repaired, just in time, I thought, for me to take the stage again. Thinking the problem was over, I’d applied a little makeup before going to a concert. We know how that turned out.
This morning, I cancelled my make-up session. I didn’t want to make my elephant face any worse. I did not cancel my up-do.
And then I went to yoga. I’m so glad that I did.
Our teacher, Sharon, shared a passage from a book in which yoga instructor Sianna Sherman answers the question, What’s the best advice you’ve ever gotten?
Sianna answers, “Inner body bright,” a phrase she’d picked up from her teacher, John Friend. Sianna explains that this phrase is “his way of saying ‘It doesn’t matter what’s happening on the outside. No matter how fierce and intense and up against ourselves we feel, if we tap into that place—the place that yoga guides and invites each one of us to—we’ll find that our essence is bright and that our inner freedom is fully present.’ Often, it’s our outer freedom that’s compromised by own mind. We say: ‘Oh I’m not free’ or “I’m a victim, I’m not empowered. Or, ‘This happened to me…’ And then we start to close down. And that’s easy to do, but if we go inside and wait a minute, there’s this inner freedom that’s never compromised; there’s this inner light that’s always true. So you say to yourself, ‘Inner body bright, let me melt the outer body, melt all the crazy stuff that’s happening into the fire of my heart, into that inner light, and then I’m going to stand tall in this light and keep going, no matter what.”
As it happened, that message was exactly what I needed to hear to muster the courage to get onstage with a rash, and without the makeup. When I sit in the spotlight, I somehow doubt I’ll be whispering to myself, “inner body bright.” But I did get the message there’s more to me than meets the eye.
I have lived a long time. I have sported many appearances. I have been a cute little girl, a wince worthy adolescent. I’ve been a woman in a wheelchair. Last week, just before my opening night performance, when I was the lady with the fabulous updo, the owner of an upscale restaurant rushed up to my beautiful family, and asked, “Where do you come from?” in awestruck tones, as though he expected us to answer, “We have descended from Mount Olympus.” That night, it didn’t feel like a challenge to take the stage.
Tonight I’ll have to give the audience some credit. I’ve cancelled my up-do. I won’t apply concealer. I’ll see if I can summon up enough inner beauty to outshine the rash. (The swollen eyelids had calmed back down.) I am, after all, performing for trueTheatre. The audience expects me to be vulnerable. What better occassion to take that risk?

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. http://clinicaltrials.gov/ct2/show/NCT00645749

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.

Sources:

1. http://www.direct-ms.org/pdf/HygieneMS/Parasite%20infection%20MS%20Annals%20Neur%2007.pdf
2. http://www.the-scientist.com/article/display/57941/#ixzz1EWTokRoL
3. http://en.wikipedia.org/wiki/Hygiene_hypothesis
4.http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/2474
Further reading:
http://evmedreview.com/?p=92
Do worms protect us against autoimmune diseases? The epidemiological evidence is strongly suggestive.

http://en.wikipedia.org/wiki/Helminthic_therapy
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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