Everything I Tell You is Hearsay

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. 

I hate reggae. I know I’ve mentioned this before (and quite recently) but it cannot really be overstated. Though raised by inveterate potheads, I was thankfully never subjected to the Caribbean Oom-pah music by my parents. They preferred Foreigner, The Scoprions, and Led Zeppelin, and for this I am eternally grateful.

It was not until I was romantically involved with another inveterate pothead – one who was incidentally raised in the Caribbean – that I spent more than a few minutes at a time listening to the inevitable Bob Marley song on whatever radio station happened to be on at the moment. Though I can’t say I enjoy the music any more than I ever did, I am forced to admit that listening closely to some of the things that Mr. Marley had to say made it clear to me why so many people were such devoted fans.

Bob Marley was, in my opinion, nothing less than a modern-day prophet.

I have heard this estimation before, and I make no claims to originality stating it here. That I dismissed it as the enthusiastic praise of permanently stoned was a function of my own bias rather than any evaluation of his message. Once I stood in the face of it, and let it sink in without the filter of my assumptions, I was moved to agree with the assessment wholeheartedly.

I know very little about his personal history, other than what I’ve absorbed through the cultural lexicon; he died young, advocated for peace and justice, and believed cannabis was a gift from Jah meant to liberate the minds and souls of man. That the last of these is his most prevalent legacy is something of a shame, because my own knee-jerk reaction to dismiss the source of the lesson without examining the lesson’s merit very closely mimics that of the mainstream cultural paradigm.

His words, stripped of all context, are luminous. His message is unwaveringly one of peace, compassion, understanding, and love. He acknowledges his own flaws and the glorious lovable imperfections we all possess with equanimity and grace. His pose is never that of preacher, but of humble apprentice vulnerable to the lessons life has to teach.

Much of what he offers has strong echoes of the words of Jesus, Buddha, Tich Nat Hanh, and many of those both wise and open-hearted. The fundamental belief is that we should extend ourselves to understand each other, to practice tolerance in all things, and acknowledge that we are each of us imperfect, glorious, and strong.

Situated as this message is, at the fringes of the larger collective consciousness, it is all too easy to dismiss as wishful thinking, romantic fantasy, or hippie-speak. Embedded in an art form I found personally unpalatable, it went entirely unnoticed until the right person insisted I pay heed to it despite my disposition. That wisdom can emerge from unexpected places has long been known to me; that I might have to look for it through a cloud of pot smoke and the sound of steel drums was a complete surprise.

[mis-uhn-der-stan-ding]

noun

1. failure to understand correctly; mistake as to meaning or intent.

2. a disagreement or quarrel.

 

There must be some kind of mistake

Working backwards from outcomes to find their cause is a dangerous business. Understanding how prone this method is to the post hoc logical fallacy, you’d think I’d be somewhat inured to making the kinds of assumptions associated therein. Nope; I do it all the time.

I’ve been doing it to my considerable detriment for a long time now. Having been trained in the scientific method, once upon a time, it recently occurred to me I might want to try applying this to my own real world experiment called life. I formed a hypothesis, created controls, and analyzed my results. Turns out, my hypothesis was right: I’ve been doing things all wrong.

As much as this is disappointing on one level – I can’t resist feeling foolish for not having considered this possibility a long while ago – it is also extremely encouraging. I have been sinking under the weight of trying to do everything I can to support myself in achieving the best possible outcomes. I did so operating under the assumption I was doing the correct set of things to accomplish that; even though some of those correct things were odious and my results were deteriorating in quality over time.

What this auto-experimentation tells me is that though I have the persistence to do even unpleasant things that I believe are in my own best interest, most of what actually serves me best are things I feel a more natural affinity for and enjoy on their own account. This is reassuring, as it is nice to know that I can and will act on my own behalf even if it isn’t the path of least resistance. But it is also a profound relief to know that I don’t have to go on justifying the unpleasantness that goes along with these things I have been doing that are not working  simply because they are “good for me.”

In moments like these, I am reminded that sometimes, being wrong is the best case scenario.

 

  [shuh-grin]   noun, verb, cha·grined orcha·grinned, cha·grin·ing or cha·grin·ning.

This cannot possibly go anywhere good; I cannot wait!

Spent all day yesterday abed on account of this unfortunate, irresistible tendency. My best hope is that I’ve got it out of my system for a spell.

   [freyl-tee, frey-uhl-]