I am not a particularly imaginative person. I am instead better at observing, synthesizing, and interpreting data. To encounter unquantified mystery and produce novel results is generally beyond my ken.

I’m fairly equivocal about this truth most of the time. I lament that it causes each song I write to end up sounding and feeling a lot like every other song I’ve composed, but apart from that and my comprehensive inability to pen fiction, I don’t find it really interferes with my quality of life overmuch. It has instilled in me a reverence for people who do possess that kind of visionary knack. It is curiosity and courage wed to intangible inspiration and it is the closest thing to magic that we can encounter with regularity.

There is after all an upside to this lack of imagination; though I conjure worst-case scenario fantasies as readily as anyone, it turns out most of what I come up with is fairly tame and doesn’t begin to be as awful and crippling as some of the things I hear other people fret over. I worry about my daughter crashing my car and my insurance rates going up – her father worries she and everyone involved will be decapitated. For example.

That being said, when I have access to that data I like so much, I can work myself into a FRENZY OF CONJECTURE based on the available information and outcomes I can gather from various sources. I thank my training in the scientific method for the ability to verify with rigor the quality of the data I encounter; this saves me a lot of time on the internet trapped in the equivalent of a bad drug deal:

“No, man… I just came in here looking for a peer-reviewed research paper about treatment modalities for this syndrome. I don’t want to see your lesions. Or hear about how Melaleuca cured your pancreatic cancer and post-nasal drip all at once. Nope… don’t want to hear about the healing power of Jesus. Or to show you my boobs.”

That being said, with the exception of things like Celiac – for which there are blood tests and a distinct treatment protocol – the nature of a lot of gastrointestinal ailments are such that they are notoriously hard to diagnose, have multivariant symptoms that overlap, and rarely present a clear mechanism of cause or cure.

Crohn’s Disease is one of the slippery kind. It was first suggested as a possible cause of my distress back in early October of 2014. I had been having symptoms off and on – much more off – since about 2010. I chalked it up to a wide variety of causes before it finally became clear there was something systemic going on that wasn’t just going to resolve on its own. Some of the highlights of conjecture:

• Food Poisoning: given the rather dubious quality of my diet, this was of course a natural place to begin. Problem here being that I was eating much the same crap all the time and only having wrenching gut pain and firey liquid excrement as an (ahem) outcome once in a great while.
• Antibiotic Poisoning: this one was very convincing for a long time. After being hospitalized for a serious pelvic infection, I was put on IV antibiotics for 4 days and then a course of other equally nuclear pills for the following 2 weeks. I am absolutely positive it killed everything in my microbiome dead as a doornail and I have never been quite the same since. I do think this is at least a point in the map of the constellation of conditions which lead me to where I am now gut-wise.
• Food Allergies: eliminating dairy, being tested for gluten intolerance all yielded nothing, and like the food poisoning, it was so intermittent and seemingly unaffected by what I was or was not eating it didn’t really ever present a compelling case.
• Endometriosis: in this particular case, I did in fact have stage four (!) endometriosis and a bum ovary. However, their treatment and removal did nothing to abate the symptoms I was hoping to alleviate. On the whole, my quality of life has improved in lots of other ways since I lost the extraneous ladyparts, so I see that as a net win, but it wasn’t the answer I’d hoped it to be.
• Porphyria: I was never sure about this one, though my doctor insisted we test for it. Minus the hallucinations, I wasn’t convinced. Lots of other symptoms did fit, but I could never quite see King George and me really having that much in common.

So this list of options eliminated, no less than 4 different kinds of pipes, tubes, and cameras strung through various openings in my intestinal tract, and 9 months of increasing physical and emotional distress I was last week finally vindicated to hear my gastroenterologist concede it was “almost certainly Crohn’s.” This continued equivocality would trouble me more except that this turns out to be the most definite she is allowed to get without an actual tissue sample. Obtaining such would require yet another possibly-fruitless trip up my bunghole, and since I am the opposite of keen on that, it’s what we’re going to work with for now.

This kicks into motion all sorts of contingencies that I wasn’t quite able to be sure were the right course of action for me. Being both viciously sick and held in abeyance all these months has been incredibly difficult physically, emotionally, and psychically. Everything felt futile and interminable and unknowable. Simply having an answer – even a hard one with long term consequences that are Decidedly Not Awesome Mostly – is still far better than the aching sensation of searching for a horizon that cannot be seen for the glare of blistering uncertainty.

It’s not what you thought, when you first began it

More, it frees me to collect data – very specific data – about my condition, my treatment options, and what lifestyle choices I can make that will best support my ability to heal and minimize future insult to my system. So much of what was frustrating was the sense that any action I took would be a wild shot in the dark as likely to cause additional distress as any kind of relief.

In fact, much of what I had been doing to try and “improve” my diet over the last few years likely contributed – not to the cause, which is autoimmune after all– to the exacerbation of my symptoms. Eating a varied high fiber diet loaded with nuts, olives, berries, and coconut all turns out to be really hard on the lining of the intestine afflicted such as mine.  My previous tendency to eat fast food 6-7 times a week, though obviously less than ideal in many other respects, was still in the main less problematic for my compromised GI tract to process.

Oh, the irony.

The “low-residue” diet that is recommended for the Crohn’s patient is a pretty amusing read. The things I “can” eat are hilariously, notoriously not the stuff we all hear we should be eating. Some highlights:

• Breads/Starches -White breads, rolls, biscuits, muffins, crackers, light rye bread without seed. Pancakes, waffles, refined cooked cereal such as cream of wheat, cream of rice, grits. Dry cereals including Corn Flakes, Rice Krispies, Special K, Puffed Rice. White or sweet potato (no skin), white rice, pasta
• Vegetables – All allowed except those not recommended or those with skin or seeds. Cucumber, green pepper, romaine, tomatoes, onions, zucchini tomato, carrot
• Fruits – All allowed except those not recommended or those with skin or seeds. Apricot, banana, cantaloupe, honeydew, nectarine, papaya, peach, plum, watermelon
• Meats/Proteins – Tender, ground or well-cooked meats. Fish, poultry, eggs, tofu, creamy peanut butter
• Fats – (A favorite category, this one) Bacon, margarine, butter, vegetable oils, salad dressing, mayonnaise, cream, plain gravies, whip cream, creamy peanut butter
• Miscellaneous – Plain cakes, cookies, pastries, pies, sherbet, gelatin, sugar, plain hard candy, condiments, coffee, tea, carbonated beverages

Meanwhile, I CANNOT have:

• Whole grain, stone ground cracked wheat, pumpernickel or dark rye bread. Whole grain crackers, muffins or cereal. Corn bread, corn muffins, bran cereals, granola, oatmeal, whole wheat pasta,
• Legumes (beans and peas–kidney, navy, lima, black, chickpeas or garbanzo, pinto, soy, black-eyed split and yellow peas, lentils, peanuts, crunchy peanut butter
• Lima beans, green peas, broccoli, parsnips, corn
• Seeds, nuts, olives, coconut, poppyseed dressing, crunchy peanut butter
• Horseradish

So. Those corn-tortilla chicken chilaquiles & $5 bloody Marys I was so cranky not to be getting at Henry’s last weekend turn out to be bad for me. Guess I can stop being irritated they have all but eliminated brunch, now.

The olives, beans, and nuts are the biggest blow as I eat them basically every day; though my extreme fondness for coconut is right up there in terms of bummerness. In the main though, it is actually kind of comforting to know the things I should be avoiding are things I have been eating like it was my job. Because if this level of distress is at least due in part to continually shoving exacerbating elements into the mix, it is a huge relief to think I could easily just stop doing that.

Even more, a lot of things I was imagining I’d to have to eliminate – bread, cheese, bacon – are all on the list and a pretty decent consolation prize for being relegated to the consumption of the clearly inferior creamy style peanut butter. My need to have exclusively tot-chos, and never again Juanita’s Crack Chips of Doom under my black beans and heaping cheese.

I was imagining it would be a lot worse, is what I’m saying. Now, armed with data – and access to bacon – I feel much better about the things I am confronted with. The horizon, now visible, is still a hard climb but surmountable nevertheless. 

É¡rit/

noun

1. Abrasive particles or granules, as of sand or other small, coarse impurities found in the air, food, water, etc
2. firmness of character; indomitable spirit; pluck:
3. a coarse-grained siliceous rock, usually with sharp, angular grains.
4. sand or other fine grainy particles eaten by fowl to aid in digestion.

verb (used with object), gritted, gritting.

1. to cause to grind or grate together.

verb (used without object), 

1. to make a scratchy or slightly grating sound, as of sand being walkedon; grate.

Idioms

1. grit one’s teeth, to show tenseness, anger, or determination by or as if by clamping or grinding the teeth together.

Tires On My Go Machine: AKA Happiness in Pink

I get it in in my shoes sometimes, grit. My tendency to wear ankle socks, instead of something sensible when I hike, my headlong enthusiasm for the shore, covered in sand; all these result in carrying home tiny passengers which will take up residence in my bedroom rug.

I also demonstrate it on occasion; when faced with opposition.

I feel like my life has required an uncustomary degree of the stuff, for about the last year and a half. I am both impressed with my fortitude and tired of needing so much.

It has cast all that came before it in terms that help me realize how precious certain things I once took for granted turn out to be; freedom from intense physical distress, a reasonable presumption that laid plans can be executed given sufficient will, only chief among them.

I woke up early this morning. No particular reason, but my mind was scampering around such that I knew no more sleep was to come. Lying there in the early dark, I took stock of my physical well-being. I do this every morning now, and I am very sorry to say that for the last few months in particular, the answer is almost never “I feel well/good/fine.”

Some days, indeed it is not so much an inventory of my flesh as a catalogue of affliction. There have been respites – aided by medicine that is somewhat vile to take and odious to endure – but not since early in March has there been a string of days together where I was not in pain and some other alimentary torment. I cannot eat, sleep, work, exercise, or even lay still like a beached walrus with any degree of comfort or surety that the activity will not send my guts a-roiling in fashion like to result in moaning and exhortations.

I have resorted to medicaments, ablutions, and medical invasions I would have declared unthinkable this time last year. The various caretakers attempting to unearth the cause of all this fortitude are as yet stumped. Various incomplete and unsatisfying suggestions – along with odious and drastic treatments accordant – have been floated and ultimately found wanting; if they are not wrong entirely, they do not encompass the entirety of what seems to be going on.  

So, it happens I have become keenly aware of the exquisite value of a moment when I feel able to set my mind to a task such that I believe my body can complete it. When the sun is shining inside my skin, oh the hay I make, these days.

So then I strapped on my shoes – which are too tight because my feet are swollen from the meds that keep me on them – and went for a run. I managed 3 miles at more or less my top speed and was very pleased indeed I did. Now that I am sitting at my desk, barely able to sit up straight for the grinding inside my belly, it pleases me all the more.

 [mas-uh-kist]  

noun

1. Psychiatry. a person who has masochism, the condition in which sexual or other gratification depends on one’s suffering physical pain or humiliation.

2. a person who is gratified by pain, degradation, etc., that is self-imposed or imposed by others.

3. a person who finds pleasure in self-denial, submissiveness, etc.

 

I Hurt Myself, Today

Root canal and final exam, today. I did this to myself. Clearly, I enjoy suffering.

Not like that’s news…

 

[uhb-toos, -tyoos]

adjective
1. not quick or alert in perception, feeling, or intellect; not sensitive or observant; dull.
2. not sharp, acute, or pointed; blunt in form.
3. (of a leaf, petal, etc.) rounded at the extremity.
4. indistinctly felt or perceived, as pain or sound.

“Are you being willfully obtuse?”

Those dreams most limned with light, drenched in seductive sweetness, are then hardest to cast off the logy clutches.

I am possessed of a dubious gift; properly fed by fantasy, folly, or fancy I am able to ignore the evidence of my reason unto the very end of sense.

Despite repeated provocation, misgiving, and doubt, I still heed the hope of my heart rather than the proof of practice.

It is so rare that I am moved, so infrequently roused to optimistic consideration, that when it does occur I am deeply loathe to abandon such promise once revealed.

Yet, after some remove, there is naught to be done. Once exhausted all actions liberal, considered, and fair there must come at last some dignified resignation to a truth that had been evident some time since; willfully unseen.

Uncontrived, must be ignorance, to earn its concomitant bliss.

Once upon a time, I made what would prove to be an

extremely bad decision 

about my reproductive health. The consequences of this 

extremely bad decision 

are plaguing me still. Suffice it to say I would recommend condoms made out of 80 grit sandpaper over an IUD, were anyone to ask my opinion on the matter.

At any rate. Antibiotic intervention has once again become necessary. This sucks for a whole host of reasons. Among them:

• No Drinking – Yeah, that’s right. I’m off the fuckin’ wagon. Wanna make something of it?
• No Sex – Yeah, that’s right. I’m off the fuckin’ wagon. Wanna make something of it?
• Gastrointestinal Chaos – Which I had just managed to get under control with concerted effort, probiotics, and better food choices.
• Motherfucking Thrush – which is a thing usually only the respiratorily desperate and immuno-compromised (also babies) are prone to get. 

But, it turns out

I am a goddamned delicate flower

(pause for laughter)

No, really. I am. Practically the only reason any of this is happening is because I am a delicate flower. If there is a side effect, to any medication, procedure, or medical device I will get them all. And then usually some they didn’t really know about before.

In the case of the IUD it turns out the vast majority of people don’t have these hideous, recurring, life-altering side effects. In fact, only about .16% of users (as in, 1.6 per 1000) do. And of those, basically NONE of them end up in the hospital for 4 days on IV antibiotics. Like I did.

Nor is this, by any means, an isolated phenomenon. Last week I was speaking to my friend, the PharmD, about why I cannot take the only reliable asthma medication I have ever been able to find  because it makes me lose my voice.

(pause for collection plate to circulate to obtain supply of medication for tactical application)

When I mentioned that my M.D. had been baffled by this symptom, my friend said excitedly,

“No! It’s a side effect of that medication. It’s just super rare! You’re totally cool!”

I can’t say I was able to muster his enthusiasm on the subject.

So! I’m on antibiotics. They make me feel like shit, and smell weird, and give me thrush. In addition to this, I also seem to have developed a stye in my eye*! Puffy, tender, swollen, red; all hallmarks of hotness, for sure. Finally, after passing out on the nude beach Sunday, I have a fairly righteous sunburn on my ass. This is healing, and is thus now itchy. As(s) a result, I’ve been walking around all day scratching my butt. 

You know you want me right now. Don’t even act like you don’t.

*And OF FUCKING COURSE it is my good eye, so applying the necessary treatment makes me functionally blind for a while.

 [hohm] 

 noun, adjective

How home is crafted, defined, or delimited from everywhere else is singular as skin. And though a dim procession of places reels back in time, certainly no one and definite home can be distinguished from the series of places inhabited through the years. The effect of this rootlessness is carried through the seasons. This wandering from place to place cements in me the notion that problems can be solved through upheaval. I nurture the vain but perpetual hope that in a new locale, with other surroundings, the circumstances of my life will improve. And though I know now, this is almost never so, I still find myself tempted by the notion that my location in space might change my interstices as well.

I remember many places I have lived. There were no less than eleven places before I became an adult. The only place recalled with any fondness is the place my parents shared before they split. It was large and full of light, had hard wooden floors and stairs to slide down, a big bay window in the dining room and a view of Buckman across the street. The rooms were furnished sparely, so when I yelled my voice echoed back at me. Far better was when I sang. I remember looking out the window at the school and thinking enviously about my sister, there during the school day, who got to swim. I don’t remember clearly which angle I saw the school from, so whenever I drive past now I’m not sure if it’s the gray Dutch colonial on Stark or the white one on 18th and Oak. It’s a fashionable neighborhood now, and I can’t afford rent there myself, but I know I loved living there.

It was a time when I was still a child treated with some tenderness. I can remember being bathed in the sink, and fitting, but just barely. It was in this house that I had my first surgery to correct my eye. There are photos of me sitting in the windowsill one yellow barrette, one blue. The whites of my eyes closest to my tear ducts are bloodshot from the operation. I smile sweetly in one shot, look out seriously through lowered lids in another. And these are my favorite photos of me. I am a solemn but innocent child, vulnerable, but safe. When I see myself this way, I cannot help but love the child who sits in the frame, pleased to be photographed and enjoying the attention this trip to the doctor has afforded. This child has a sweetness I can no longer locate within myself. She trusts the world she lives in as an unpredictable, but largely enjoyable place. She is, as yet, untouched by the fear and mistrust of others that will mark the remainder of her childhood. I want to weep for what I know she will endure, I want to protect her, and feel deep compassion for her, though I fail so often to muster any pity for myself now. And I am sad to say, that this is her last happy home.

 [dahrk-nis]  

The dark is made of mysteries and irresistible beauty. Learning to love them can be an uncanny pleasure. Accepting that darkness can be a place of insular warmth as well as stark coldness, of safety and inviolable privacy and not just something to obscure anguish and shame. It is no small thing to admit a fear of the dark that lingers into adulthood. To feel not just the agreeable titillation of giving run to an eerie sensation for the pleasure it will provide, but to be gripped by an unnamable terror of being alone without light. So it is no small thing I do to begin in the dark. So many moments passed this way, it is fitting perhaps, but still, no small thing.

Some years ago I made to etch a lesson in my flesh; the remembrance that I have always been able to navigate even with the faintest light to guide my way

Owl medicine is about vigilance, seeing through the darkness, and shedding that which is no longer required. So, then.

Good at the first part; still learning the second.

Memories shrouded in such darkness are lit only by the sodium vapor orange which is the color of nighttime in my bedroom. There are no nightlights to offer even the most feeble reassurance, and many times they would have been useless for lack of the electricity in the house necessary to feed them. Light and noise are to be strictly limited by children in any case, but at night most especially. Walking happens only on tiptoe with the most careful steps. One must reach for the edges and corners of things to maneuver should one dare to leave the bedroom at all. Nor would it be worth the risk, but for the needs of a small and impatient body. My hands curled around the cold rim of the cast iron tub assure me I am almost there. I sit in the dark and listen to the sound of my relief. I reach behind and flush. I stand to shuffle back to my room, inching back along the length of the tub when the door flies open. Still there is no light, but the hand comes out of the dark and when in strikes me, colors flash in my head.

“You know that goddamn toilet wakes me up when you flush it. How many fucking times do I have to tell you?” I am too young to have learned yet that no answer is the right one, but that “I don’t know” is the worst possible. Better to lie than to admit puzzlement. So the hand swings out again. “If you wake me up again, I’ll beat your ass. Now shut the fuck up and go back to bed.”

I have still not totally adjusted to the idea that this person, this cousin of mine, has now become the man who’s every whim must be remembered and obeyed. That my mother’s indifferent but generally benign treatment of us is no longer the order of the day.

 Even at three this lesson is quickly absorbed. Thereafter I always remember, what it is to expect the unexpected, the punishment, to emerge from darkness. It is now my great task to realize I can live outside of it, despite its great desire to hold me.

   [dis-fawr-ee-uh, -fohr-] 

noun .

1) a state of unease, sadness, or distress. 

 

Antonym: euphoria

 

Derived from the  Greek root, dusphori, distress, from dusphoros, hard to bear

i like to think of myself as a pretty adventurous soul. i like to go, and do, and try stuff, so when my friend suggested we go surfing i was all for it. nevermind that it was early October and forecast was rainy and windy and 12ft seas…

i will admit, i felt pretty tough and cool with all that gear strapped to Klaus’ rack…

we made it down to indian beach on saturday and the place was de-sert-ed. there was only one other vehicle in the parking lot. at first i think to myself: “sweet! beach all to ourselves!” then i get out of the car and think: “clearly, we are insane…”

cause it was sideways rain, windy-as-hell, and chilly as all get out. i had never before used a wet suit, so i was still somewhat skeptical about its ability to keep me from losing a vital percentage of my overall body heat. and last time i checked, hypothermia is not hot. also, though equipped with what SHOULD work as chest-mounted-built-in flotation devices, i am not the world’s strongest swimmer. i was getting slightly nervous about how rough the ocean looked, plus, when we unstrapped the boards, the wind picked them up and tossed them off the top of the car and cruelly down to the pavement. i found myself looking at my companion and saying: “have i made it clear i don’t want to die like this?”

nevertheless, we hoofed it down to the water and gamely waded in. it was at this point i discovered what i can only describe as the most magical thing i have learned in years: if i wear a wetsuit i can go in the ocean in october, and it is totally comfortable. seriously, this is life-changing information.

so. after a brief introduction to surfing basics, i wrestled myself on top of the board i’d been handed and managed to ride a pretty nice wave back to the shore. i was on my belly the whole time, but i can see why people abandon real life to do this all the time. i have to liken it to the feeling i had the first time i was on skis; the feeling was one of body-engulfing ecstatic giddiness. this obsession? it has me.

bolstered by my initial success, i waded back out into the water and took hold of the wider board my friend offered me in the hopes that though more cumbersome, it might prove slightly more stable for me and thus easier to mount. trying to wrangle this board was definitely more challenging, and about 2 minutes after he handed it to me, i managed to set it parallel to the wave (just exactly like you aren’t supposed to) and when the swell caught the board it smashed me full in the face and knocked me under. the degree of distress this caused my compatriot was considerable; apparently there was lots of blood.

i was fairly equivocal about the whole thing. i am constantly hurting myself; twisting, spraining, bruising, burning, scraping, or otherwise mangling myself. i fall down frequently doing nothing more complicated than trying to sit in my chair at work, so this pretty much seemed like par for the course. i spat blood into the ocean for about 10 minutes, but other than that, it didn’t really slow me down. plus this way, i’d look EXTRA tough and cool!!

ultimately, it was a really great experience. almost as soon as we got in the water, the wind let up and the rain stopped. the water was rough, but not scary rough. i had a few people tell me it wasn’t really an ideal day to get started on, but even if that’s true, i’m hooked. as far as i can tell, that just means, it gets better!

“This is the story of the boys who loved you
Who love you now and loved you then
And some were sweet, some were cold and snuffed you
And some just laid around in bed.

Some had crumbled you straight to your knees
Did it cruel, did it tenderly
Some had crawled their way into your heart
To rend your ventricles apart
This is the story of the boys who loved you
This is the story of your red right ankle.”

From Red Right Ankle Her Majesty The Decemberists

for i am feeling rent, and crumbled.