MD: Beat by Wheat

The body can be a hazy oracle. Not all scars offer up their stories. My illness was written in red ink all over my face, but without a conclusion. It would be another four months before I found any relief and another six months before even a cursory ending would pen itself.

It was three years ago when I began to see red bumps and a swollen rash around my eyes and mouth. I managed these symptoms for a while, but they proved invulnerable to common treatments. My face continued to become more inflamed, I began to have recurrent nausea and my digestive system tapered into a dead end.

My general practitioner asked if I had visited any developing nations recently and when I told him no, he very astutely told me that I had a rash. He suggested I see specialists if the persistent symptoms persisted. My dermatologist took a quick look at my face and determined a diagnosis of perioral dermatitis. I braced myself. How long did I have doc, before I finally succumb to the ravages of perioral dermatitis?

Perioral dermatitis is Latin for swelling around the mouth. He didn’t diagnosis a problem; he just translated the symptom. So how do I treat it? His suggestion was to take tetracycline for six months.

I warily filled the prescription and did a course of tetracycline for two weeks. When nothing changed, I stopped taking the antibiotics and went searching, once again for Doctor Right.

An allergist ascertained that I was allergic my dog. I’d lived with my dog Lulu for well over a year before showing any symptoms and had never known any discomfort with my childhood dog. Despite this reasoning, he double-downed and told me, with the bedside manner of a cyborg, that I’d be fine once I found her another home.

Each doctor made an assessment based on their respective specialties, but none offered a reasonable explanation as to what was the root cause. I knew that I came with an untidy and indistinct collection of symptoms, but rather than entertain a more nuanced possibility, they chose simplistic and sometimes illogical justifications.

As a writer, I understand the frustration when that one perfect word eludes you and any second rate synonym will ring false. The unapt word is no more appropriate than chicken soup is treatment for a broken leg. Sometimes, the proper vocabulary may present itself to you, but only after you have stripped the artifice from the idea.

Though, I had no medical training myself, I knew that these doctors were sloppily free-versing my illness. And since their treatments were not without risks, I sought something completely different. Acupuncture.

Dr. Cheng ascertained that I was sensitive to many foods. My gut was unable to process these allergens and rather than deposit this poison in the organs, the body was pushing them out through my skin.

She assigned me various herbs to aid digestion and “cleared heat” from my body with acupuncture, but the most drastic regimen she prescribed was a three month elimination diet. It is more efficient here to list what I could eat rather than what I could not. What I was permitted: cooked white fish (but no shellfish), gently cooked vegetables (but never raw), rice, beans, nuts, weak tea and plenty of water. That is it! No sugars of any kind (including fruit), no meat, no tofu, no eggs, no gluten, no corn, no coffee, and god help me, no alcohol.

The start of this diet coincided with the summer getaway my fiancé Peter and I had planned. Ice cream and lobster rolls - the spoils of summer - tantalized me at every turn. We toured a local vineyard where Peter reported to me which whites he thought were too minerally and whether this red had top notes of cherry or was it plum, a stone fruit for sure, but which one? My eyelids burned with annoyance, envy and with whatever was making my eyelids physically burn. At farmer’s markets, he pinched ripe, swollen fruits while I tried to generate excitement for the kale I would boil in filtered water. My discomfort prevented me from enjoying any rigorous activity and sex was limited to watching Peter eat a cookie.

After six weeks of eating bland, repetitive meals, my skin cleared completely and my digestion normalized. I stayed on this monastic diet for another month before I began to introduce each food type, one at a time. When I had a negative effect to anything I ate, I stopped consuming it, and let five days pass to clear it from my body before I began a repeatable, stable experiment with next food type. This took another three months.

Being the end of summer, I opted for sugars first, so I could benefit from the last harvests of fresh fruit. Having gone without any sugars for so long, a single plum got me tweaking like a meth addict, but my skin was ok. Dairy put my stomach in a vice, but it did not affect my skin.

It became clear which was the grossest offender shortly after I brought home a baguette. Within minutes of eating that doughy goodness, my eyes began to itch. Hours later, my face became swollen and red. That night, I had surreal anxiety dreams and fitful sleep.

I grew up in an Irish-American household where the only alternative to the ubiquitous potato was white bread. From first through ninth grades, I ate a peanut butter and grape jelly sandwich on Wonder Bread five days a week without exception. I had had many years of peaceful coexistence with gluten until now. What had changed? Why had the body decided that this was suddenly poisonous?

I was skeptical of gluten being the cause because it was the disease du jour. Ten years ago, I had never even heard the phrase “gluten intolerance,” and now it was the new black.

I found a gastroenterologist to determine if I had Celiac’s disease, Crohn’s or Irritable Bowel Syndrome. This required an extensive excavation that I will avoid describing. Suffice it to say that the outlook was good.

We ruled out all those diseases and any herniated or blocked intestinal tissue. I was healthy except that I was not.

My G.I. doctor recommended that I cut out gluten entirely, soothe my digestion with Aloe Vera, take probiotics, eat a high fiber diet and avoid processed foods.

As I write this piece, years later, I just had a relapse of the same digestive issues, despite having avoided all those known triggers. Perhaps by putting this account on paper, I conjured it back into my body, mingling, once again the physical with the metaphysical. And if the physical treatments prove insufficient, than why not salve the pain with metaphors?

A story begins before the words. First, the single cell of an idea - be it an image, a sound or a sensation - catches in the walls of the imagination. It lingers and it irritates. In effort to liberate it, it is rubbed, kindled, and chafed, but it does not let go. The tissue in which this germ has embedded is worked over with friction, and then with lubricants and ultimately with time. It gestates in a belly full of muck before it will come to term.

This monster, this progeny, this nemesis will not leave your system until you can match it to its words, not unlike that fairytale troll who loses all his power once you can guess his name. There is never relief until this mote has its destiny recorded. Once you tell the story, it will pass, freeing you to contemplate once again how porous this membrane is, this veil between ham-handed sentiment and poetry, this threshold that separates poison from the sustenance by which we live.

SJ: Hat Trick

Several weeks ago, I bought a hat. It’s a grey felt, sort of modified (and yes slightly hipstery) fedora thing with a thin black ribbon for a band. I’ve bought hats before in moments of misguided inspiration, but I’ve never actually worn a hat, at least not for longer than the week it takes me to conclude that I look like a desperate poser in a hat. But this hat, this new hat – I am wearing this hat. I am wearing this hat so hard. I am wearing this hat with a vengeance. Also, I am looking into whether or not I can write it off on next year’s taxes as a medical expense.

I can explain.

I have always been a healthy person (I still am, so don’t get nervous that this is going to turn into something upsetting. Oh, and upon reading that sentence please join me in knocking furiously on whatever wood is nearest to you. Thanks). I’ve never been seriously sick, never spent a night in the hospital, and despite having been only sort-of-affectionately nicknamed “Disaster Girl” by an old boyfriend, have never even broken a bone – mine or anyone else’s. I was anemic for a while, which I found sort of thrilling, and which gave me the opportunity to regularly pepper conversation with references to “my condition” – the revelation of which would invariably disappoint the listener, and, really, who could blame them? I do faint occasionally, which makes for some entertaining stories, but my neo-Victorian swooning is not linked to anything serious and can’t really be chalked up as a health problem. To quote my partner in crime here at SBF, “I just have a lot of feelings.”

But as I’ve said, despite having been and continuing to be a healthy person, I am now wearing what I consider to be a medically necessary hipster fedora, and I am wearing this Topshop beauty because one morning this winter I woke up, pulled my hair back into a ponytail, looked in the mirror and discovered that where I used to have hair, I now had a tennis ball-sized patch of bare scalp.

This is what I think can be fairly classified as an “unwelcome surprise.” When met with it that morning in February, I did the obvious thing: grabbed the kitchen scissors, cut myself some more bangs to better cover the offending area, headed to the gym, and resolved to pretend nothing had happened.

Turned out that even I couldn’t drum up enough denial to ignore this mysterious scalp mutiny. Finding another smaller (like, apricot sized, maybe?) hairless patch behind my ear didn’t help. I began quietly showing these blights to friends, all of whom expressed appropriate concern and without exception made the same suggestion – I should go see a doctor.

I thought it over and decided they were probably right, I probably should see a doctor. Then I spent the next 6 weeks failing to see one.

There are a lot of reasons one can lose hair, and basically they’re all bad. Even if they’re not that bad, they’re still pretty bad, because let’s face it, you’re losing your hair, and the thing about hair is that it’s nice to have it. My exhaustive internet research made me pretty confident that there wasn’t anything seriously wrong with me, but that feeling generally only lasted until I remembered two key things – 1. I am not a medical doctor, and 2. I was getting my information from the internet.

A friend recommended a doctor who she assured me had lots of actor patients. I somehow found this comforting, as though actors might have some specific and peculiar physiology that required a specialist. I made an appointment, and when I showed the good doctor the spooky bare pink patch behind my bangs, she looked it over carefully and said as she did, almost to herself, “Yeah, this happens to some of my actresses.” Already she was offering information the internet couldn’t hope to provide.

Her diagnosis, though, matched mine and Google’s: alopecia areata, or as I now call it, “the good kind of alopecia.” Good because it is localized and not full scalp or (gasp) full body, good because it is temporary, good because it’s not linked to anything worse.

A dermatologist gave me seven shots of steroids in my scalp, told me I should relax, and asked me to make an appointment in four weeks to get seven more shots of steroids in my scalp -- exactly the kind of thing you want to hear when you’re gearing up to relax.

I got my bangs fixed by a real professional hair-cutter, bought the hat to outwit the wind, and even learned to sort of enjoy the mild dents that have developed in the hair-free spots, which I’m told are the result of the steroids and are totally normal. Awesome.

While I’ve been relaxing in my hat, I’ve been thinking a lot of things over. Alopecia is thought to be an autoimmune condition which, to quote the good people at drugs.com, is a situation where “the immune system mistakenly attacks and destroys healthy body tissue.” I love this idea, that the body just messes up, just goes rogue and makes mistakes. It’s both amazing that screw-ups like that can take place inside our sophisticated, gorgeously designed body-machines, and equally amazing that they don’t happen more often. What is completely un-amazing, though, is that in the course of this otherwise healthy life with which I’m blessed (more wood-knocking, please), the kind of minor trouble I wind up encountering comes not from some invasive outside force but rather from an attack waged exclusively by me and directed exclusively at me.

I feel like this is the old cliché “You are your own worst enemy,” stretched to a cellular level, which is why I file this whole episode in the “failure” column as opposed to the accountability-free ”bummer” category. I can’t help but think that my command center brain managed to get so muddled in its perception, and consequently in its messaging, that it left my immune system no choice but to attack. I imagine the little immune system guys waiting for orders out in a field tent, and then the main guy reading the print out aloud when it gets wired in from the Situation Room, and he’d say something like, “Well, this is gonna sound crazy guys, but She keeps looking at perfectly good stuff up in the northern territories and telling us we should go take it out---“ and then the other little guys interrupt and say, “That’s insane! We can’t possibly do that! She’s out of her mind! Why would we kill all that healthy tissue!?” Then pandemonium breaks out, and all the little guys bang on tables and yell. And then the main guy shuts everyone up and says, “Now look here, I don’t make the orders, I just report them! We’re soldiers and we do what we’re told, end of story!” Then, reluctantly, all the guys in the immune system would agree they had no other option but to follow the battle plan. They’d shake their little heads and say, “Boy, I sure hope she knows something we don’t.” Then – BAM! – and it’s sayanora healthy hair follicles.

I grant that this doesn’t qualify as a scientific explanation of recent events (and I’m not totally clear why I imagine my immune system is in a World War II movie) but I’m pretty confident it’s not far off the mark in terms of dramatic interpretation.

It doesn’t take a lot for me to skirmish with myself. A botched social encounter, an underwhelming audition, a project left idling in procrastination, any of these, whether real or perceived, can do the trick. Enough accumulated skirmishes and I can bump up the intensity to armed conflict, and if that carries on long enough I can march right into full-scale war, where the botched social encounter intensifies to “Everybody hates me and they have good reason to,” the underwhelming audition turns into, “I am a talentless hack and I will never work again,” and regret about projects sitting idle balloons into the certainty that I have never accomplished anything, I will never accomplish anything, and even if I were capable of accomplishing anything, I won’t because I’m just so lazy. I call this line of thinking “going global.” Needless to say it is as healthy, rational and motivating as it sounds like it is.

There was a lot of “going global” this winter, brought on by a perfect storm of crap weather, unemployment, fear and the consequent inability to get a grip and negotiate a truce with myself about anything. Sure, I sometimes left the trenches and could enjoy a leave here and there, but somewhere off at the front, the same dumb war was always waging, and I can’t help but believe that this time around, it eventually just got so vast that it went and found a new frontier, namely, my healthy innocent hair follicles.

Weirdly, though, there’s been a kind of upside in the expansion of hostilities. In a way, the ramping up of the battle did a great job exposing the stupidity of the whole enterprise. When the fog of war creeps in, it can be hard to catch the errors in one's perception, it can be hard to know which conclusions to trust and which to hold suspect, but when one’s hair actually starts falling out because somehow one’s body has gotten the idea that the thing to do right now is to destroy it’s perfectly healthy self – well, that can give a person pause. Fruit-sized patches of missing hair, hair expelled for the sake of pure, physical self-destruction - that can lead to the crystal clear revelation that one’s been fighting the wrong war.

Enough was enough. I called the fighting off and issued a moratorium on “going global.” I am pleased to report that the hostilities have been suspended, peace has been restored, and I’m going to do my best not to fail my troops so badly in the future. I still don’t really have any hair in the places I lost it, but you mostly can’t tell thanks to merciful placement and a decent haircut. I still have to get that second round of steroid shots in my scalp, but they’re actually not as bad as they sound. And surprisingly, thankfully, it turns out I don’t look half bad in a hat.