Iâ€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 Iâ€ve composed, but apart from that and my comprehensive inability to pen fiction, I donâ€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 doesnâ€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 donâ€t want to see your lesions. Or hear about how Melaleuca cured your pancreatic cancer and post-nasal drip all at once. Nope… donâ€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.

Crohnâ€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 wasnâ€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 didnâ€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 wasnâ€t the answer Iâ€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 wasnâ€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 Crohnâ€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, itâ€s what weâ€re going to work with for now.

This kicks into motion all sorts of contingencies that I wasnâ€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 Crohnâ€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 Henryâ€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 Iâ€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 Juanitaâ€s Crack Chips of Doom under my black beans and heaping cheese.

I was imagining it would be a lot worse, is what Iâ€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. 

noun

1. A variety of magnetite that possesses magnetic polarity and attracts iron.
2. A piece of this serving as a magnet.
3. Something that attracts strongly.

The landscape – both within and without – is now so different from any ever before seen it is almost as though I have been transported to a new and unknown place whilst asleep.

A friend of mine once said to me, “Falling in love is like reaching into a bag of mixed candy. Everything you pull out is sweet in its own way, but no two pieces are ever the same.” This time it feels like I reached into the bag and pulled out a confection as-yet-unnamable but lovelier and more delightful than I had even imagined possible.

In the last week I have been confronted with the limits of my own beliefs, sighted the horizons of what I thought possible, and swept past both in a manner so compelling I know I will be forever changed by the experience. Outcomes being as unknowable as ever still take on the character of foregone conclusions.

Through it all, drawn irresistibly forward and on, when it is so tempting to submit to the gravity working on my heart, I admonish myself to breathe, to pause, and to dream that when I wake to this reality again, it is all the sweeter thereby.  

verb (used with object), habituated, habituating.

1. To accustom (a person, the mind, etc.), as to a particular situation: Wealth habituated him to luxury.
2. to frequent.

verb (used without object), habituated, habituating.

3. To cause habituation, physiologically or psychologically.

One of the most fundamental principles of happiness is staying present; to keep attention focused on the moment, in the body, and consciously awake. That we are not particularly good at this as humans is one of those ironies that convinces, if there is a god, he has a twisted sense of humor.

 Because, the gulf between knowing something intellectually and realizing it meaningfully can be vast. Even this detail – that recognizing and enacting  truths are markedly different things – can send one into a spiral of metacognition from which it is not always easy to recover.

In this vein, and in an effort to support my best chances as happiness while simultaneously outsmarting myself, Iâ€ve taken to plastering my surroundings with little reminders about what contentment is built out of. The admonition to sleep, to laugh is situated under prompt to find joy in the ordinary, adjacent to the suggestion to leap an build wings on the way down. A visual map of the future I am building myself every moment is charted over a wall entire and is the first thing I see when I awaken each day.

And when I actually note these things, my breathing slows, I quieten into my body, and I am instantly happier. Yet like anything to which one is constantly exposed, these objects meant to catch my attention and focus my intentions have become a kind of visual background noise. Though part of the practice is to add something new each week that it doesnâ€t become so familiar as to slip from my conscious consideration, it is still all too easy to look without seeing; to notice without perceiving.

Yet how delightful the project has been; to surround myself with gorgeous possibility and relentless encouragement. Never before had I considered that happiness was a practical act undertaken each day with deliberate intent. Only recently have I been able to disengage the idea that feelings inform our state of being, but do not dictate it entire. I may feel sad but it does not have to mean I am sad. That being vulnerable and emotionally animated means I am moved easily and imbued with concomitant flexibility and resilience thereby.

Much like the pleasure of warm air on my skin is heightened by pausing to notice it, so too is the value of any experience where I can dwell long enough to attend to my responses. While this process can be uncomfortable at times, it is always enlightening, and usually results in revelations I might never have encountered otherwise. I am empowered and fortified by this practice in every case. The trick then is to make a habit of noticing when I do not notice.

Seems perfectly simple…

Dress up is my favorite game

I always manage to turn the celebration of my birthday into a multi-day affair. Sometimes, in particular circumstances, the festivities will go on for weeks. 

This last weekend I hosted a party for my peeps. I was worried that the classic party night, of the last Saturday before Halloween would present stiff competition for other goings on, but everyone I really wanted to see made a point to come see me and bestow their birthday wishes. Plus I got to see some friends who had been all too long absent from my life. It was lovely.

I did order too much beer, and now probably need to have another  party for the sole purpose of emptying the kegs. Either that or offer trick-or-treat beers to parents…

 Plusalso, the actual birthday birthday HAS YET TO HAPPEN!!!

Yay.