27 April 2012


[visuals:  3 new, 1 new]

April 26, 2012
I assume, probably safely, that most of you have experienced moments in life in which its principal character—you—seems to be detached from the reality of that moment.  We are familiar with this sensation from our dreams—the disconnect, our selves behaving abnormally, our thoughts the thoughts of lunatics or heroes, calm in the face of madness or calm in the face of villainy. 
But waking life has the same potential to catch us unaware, else how could our subconscious produce the phantasms of our dreams.  For all of our efforts to tap reality throughout a given day, we are prone to illusions.  So I am not overly surprised when I find myself outside of myself, floating cloud-like or falling anvil-like. 
In fact, it would appear that those vertiginous moments of surreality (whether experienced while asleep or awake) might be just as actual as the rest of our experiences.  Which is to say, if at any given moment I could just as well see myself from the inside as watch myself from the outside, then the sensation of detached identity is an illusion—there is no duality of mind, no two beings occupying the same space, there is simply a switch in perception, a toggle between the typical and the occasional.
This is not meant to sound like hocus-pocus or some drug-induced hippy notion; it is just a statement of conceivable fact.  And to my understanding, conceivability is an aspect of the imagination; imagination does not create (don’t tell the artists), it unearths clay from possibility and fashions something lovely or gruesome or something more subtle.  It is conceivable that I am actually floating like a cloud but it is inconceivable that I am floating like an hurangamatang. (I did not create that word, I invented it for the nonce from a pre-existing lexicon.)
Anyway, if we take the above-mentioned suggestions to be accurate, then our highly esteemed “reality” is little more than a ramshackle construction of our perceptions—our five senses in cahoots with our Five-Star Conceiver, the brain.
[Note: I leave the metaphysical and idealistic to the Eleventy-Star Conceivers.  My aptitude for the unnatural is embarrassingly slim.] 
Sorry about that.  My stream of consciousness often finds an alcove and eddies for awhile.  Let’s leave the “actual” to its eccentricity and proceed to the practical.  Let dreams be goofy and waking life be normal and out of body sensations be anomalous. Above all, let Jonathan be sensible.
Back to the disconnect.  That harrowing moment or string of moments when you find it hard to believe that the life you’re living is the life you’re living.  This can be a good feeling—a dramatic change in your circumstances for the better, be it a lottery won, or a sublime view of the ocean.  Or a bad feeling—a dramatic change in your circumstances for the worse, be it a fortune lost, or an impending tsunami.  Or it can also be an ambivalent feeling—for good or for bad, that real “you” is left to its own devices and this other “you” is AWOL.
OK, let Jonathan be pertinent.  Sensible eludes him.
I often find myself in a state of good health.  A brief inspection would prove the state false, but for whatever reason, it does not occur to me that I am limited.  For instance, I can be stretched out on the sofa, watching TV, eating Pringles and meanwhile lapse into a semblance of tumorlessness.  Like anybody else so engaged, I’m being lazy, becoming desensitized, and growing fatter.  I’m the sort of person who could, at a moment’s notice, get up, get decently dressed, and walk to the 7-11 for more Pringles.  Or, I can be outside in the fresh air, watching the birds fly in and out of the swaying gum tree boughs, attuned to nature—her small delights and massive powers—and reckon myself boundless—the hiking poet of my youth, the rock-scaling, cliff-jumper.
But for practical purposes, no, that is not me.  My state of mind does not match my state of brain.  And without fail, this realization returns with jarring force.  Of a sudden, I am weak.  As if this was the first I’d heard of it.  Me, hobbled?  Maybe that blond, bearded man sitting exactly where I’m sitting, but not me. 
Yes, me.
Though I go weeks or months without a seizure, I am, in reality, just one shock away from one.  Though I go years with a static tumor, I am ever wary of its sudden growth. 
Today I am tired but feeling alright.  Feeling well enough to skip chemo next week.  But no, the sensation and the truth are out of alignment.  The fact is, I am tired because of the chemo and I feel alright because its last dosage is three weeks behind me. In either case, it is relative to the chemo and the chemo is relative to the tumor and the tumor is a matter of fact.    
Nonetheless, next week in the misery of incessant nausea, I will have moments of eerie transcendence.   Cloud-like, I’ll hover above me, pity the blond, bearded man, but disbelieve his condition as my own.  In the throes of my next seizure (though I wouldn’t complain if there was no “next”), the agony will be all consuming, the only reality; but as my brain relaxes and the spasms subside, I will as I almost always do, disbelieve that that lump of recovering flesh is me.
I wonder what I’m driving at here.  My eddying stream of consciousness has become a stagnant pool.  I think maybe I’m just commiserating with the whole lot of us who find ourselves unconvinced at times of our foothold in reality.  Those for whom the lines between waking and dreaming occasionally blur and the surreal is as impressive of a possibility as the factually real.
Sometimes a pleasant reprieve from crappiness, sometimes an ominous burden of crappiness, the sensation, with respect to crap, can go either way. 
Sometimes I am well, other times sick as hell.  But at all times, I’m only an illusion away from the opposite sensation.   And I think I’m fine with that.  At least, I can be reasonably assured when my sickness is center-stage that there is a well-being in the wings waiting for its cue.  It’s imaginable.  It’s conceivable.  It’s a lovely, clay-made possibility.  It’s hurangamatangtabulous.

18 April 2012

grotesqueries in motion

April 18, 2012

When you have a brain tumor, there are scads of simple activities that become difficult. Walking like you had a V-8 for breakfast becomes walking like your one year old niece with a full-head of steam and no real certainty of reaching the nearest piece of furniture. Remembering the full gamut of distant occurrences as if they happened yesterday becomes remembering what happened yesterday as if it occurred in another, more karmically blessed life. Constructing intelligible sentences comprising properly connoted words becomes constructing a ramshackle expression comprising whatever word beats all other words to the forefront of your mind—appropriateness and/ or efficiency notwithstanding. These to only mention three amongst scads of basic turned balking affairs.

Yesterday, a funny example of the third above-mentioned malfunction happened as follows:

I received a scheduled phone call from Social Security—a requisite breach of hitherto guarded information towards the exposure of my inadequacy as a productive member of society, which is to say, an assessment of my disability in order to determine my need for gubmint subsidy. (Supplemental Income is the going term, I believe.)

I should (though need not) mention the concrete scene as juxtaposed with the abstract scenario as you might appreciate the congruency of the image with the idea. The call was scheduled for between 10:15 and 11:15. Given the typical tardiness of bureaucratic eventualities, I reckoned myself well within the realm of safety at 9:30 to take a shower and then sustenance so that I would be bushy-tailed and tummy-brimmed for the grueling task ahead. Needless to say, when I stepped out of the shower at 9:39, my phone was chirping from my nightstand. I hurriedly stepped into my boxers (once simple now perilous—balance- and sharp-sink-counter-wise) and answered the call on what must have been one of its last rings. So there I was for an hour, cold, naked, and hungry, providing information under threat of penalized perjury. The flesh as symbol of the circumstance.

Now back to the construction of intelligible sentences. This was official business, my ducks needed to be aligned and to remain in line. The depth of my penury was in the balance and I needed to proceed mindful of details—their verity and their clarity both on call. Under that sort of pressure, you can only imagine with what difficulty the very simplest of questions became Final Jeopardy versus Ken Jennings and a short, smarmy, gray-headed curator of Egyptian artifacts from Vermont whose scarab broach dangles tenuously from a final wisp of silk.

Here are some highlights.

My son lost a year of his life in my reckoning of his birthday. I gained a couple years of bachelorhood by dint of misremembered duration of matrimony. Apparently, it took me fifteen years to finish my first bachelor’s degree.

For no good reason, I thought myself better served by answering questions with a quick return instead of a lobbed volley. Eventually, this plan backfired as my interviewer began to re-question where there were logical and sequential inconsistencies.

Now here is my favorite highlight.

At a particular point in the interview, I was required to read off a list of my current medications for the record. Fortunately, I had the presence of mind (even a haphazard mind has presence a couple of times a day—like the broken clock) to ask whether she wanted the generic or the brand name of these drugs. Fortunately, she had the presence of mind to choose the latter because, as it turned out, I had a hard enough time with the more simply spelled brand names.

Take Lamictal (generic is lamotrigine) for instance.

“Can you spell that for me, Mr. Scott?”

“You bet. It’s L-A-M-I-C-T-A-L.”

“Ok. I’m gonna need you to say like ‘c’ as in cat, you know, so I can distinguish the letters.”

“Oh, yeah, yeah, I gotcha. Sorry. Ready?”

“Waiting on you.”

“Ok. That’s ‘L’ as in . . .” Paralysis! Brain Freeze. As in what?! as in what?!

Let’s pause the real time narrative and put the frenzied neurons in super slo-motion. Here are their first suggestions: “L” as in languishing, “A” as in anthropomorphic, “M” as in matriculation, “I” as in Immigration and Naturalization Service, “C” as in cat, “T” as in tintinnabulation, “A” as in agoraphobia, and “L” as in lemon-lime liquid refreshment.

Obviously this would never do. Back to full speed narrative, except now I lobbed my volleys, buying time. It was still no eloquent rendering but we got through it, she and I, with patience and mutual sympathy.

“Ok. That’s “L” as in, um . . . elephant, wait, no, I mean “L” as in litter [whew], “A” as in . . . ankle [yeah!], “M” as in monsoon [ok], “I” as in I [duh], “C” as in cat [easy-peasy], “T” as in trinket [pretty], “A” as in ankle [like before], and “L” as in love [too weird? Oh well]—Lamictal!”

“Got it. Next?”

Then three more medications spelled out under similar duress. Good times were had by all.

So, ya see you gotta keep yer dukes up when you're tumor-tipsy and drug-addled. The simple’s neither easy said nor done. Pillows are hurdles. Basic thoughts are feats of focused erudition. Breezy conversations are ponderous palavers. Cats, though, cats are cats are cats as in the letter “C”.

I should (and must now) let you know how my day with the social security office came to a close. How in the end as from the beginning the image and the idea were as a man and his noontime shadow. After the phone interview, I had to go downtown to the SS building to sign a medical records release form. We waited about an hour in the waiting area before we were called to a partitioned window. The worker was an amicable sumo wrestler, quick-witted and fitted with an ineradicable smile. It was nice to have a pleasant experience to cap-off a morning of awakwardness. I signed a paper and off we went.

Done and done, my wife and I left the building. It was raining. We had no umbrellas. Our car was a block down the street in a car park but there was no dry access from where we were to the garage’s entrance. We waited. It would pass. Look, it’s already letting up. Let’s just go. But no, she didn’t want me to walk in the rain, through puddles, with a dragging leg. Good point. We waited. Look, now it’s just a shower. And off we went. No sooner had we gone too far to go back than the deluge returned in earnest. It was a slow, cold trudge down the sidewalk with nothing for it but to proceed.

And here’s the kicker. By the time I got to the car, we were drenched. I had but one option.

I rode home without a shirt on, to the delight and disgust of any fellow commuter with a reasonable view. Picture it: cold again, naked again, and, come to think of it, hungry again. My life in miniature. Grotesqueries in motion. The poetry practically writes itself.

09 April 2012

it doth posset and curd

[New pics here and here.]

April 1, 2012

Well, it’s my time of the month. I’ll stop the analogy there.

Day one. Last night’s chemo is finding its traction in my bloodstream and disseminating its treason—its “Murder most foul . . . strange, and unnatural.” *

And this time, I will not regret its ostensible slowness on this first day. Last month, I was brash, taunting the chemicals to do their worst. By the end of the day, I would have eaten my words but for my appetite being wracked.

No, today I will tiptoe. I will navigate by periscope. I will take my Zofran preemptively.

Because I know too well this Temodar “whose effect holds such an enmity with blood of man that swift as quicksilver it courses through the natural gates and alleys of the body, and with a sudden vigour it doth posset and curd, like eager droppings into milk, the thin and wholesome blood.”

April 8, 2012

Would that the passage of time in misery was as fleet as the passage of time in this journal. At last entry, my yarky week was just beginning; at this entry, the yarky week is petering out. And good riddance.

What gems from nausea have I mined since our last meeting? What new depths of discomfort have I plumbed for your general amusement?

There’s this:

From the outset of my decision (believe it or not, I chose this road) to give chemo a go at my tumor, I considered it a blessing that I could ingest my therapy in the relative comfort of my own home as opposed to the intravenous injection administered in a gelid room of some clinical ward. The downside is comparatively minor—that I have to take the poison in my own hands, place the inimical capsules on my own tongue, and, against all mandates of nature, swallow. It sounds pretty rough when I put it that way but the alternative is far less appealing—drip, drip, drip, drip: the monotone litany of a slow demise.

This past week, however, I thought of one advantage to the outpatient or inpatient administration of chemo—namely, therapy animals. It was a random thought, probably elicited by the near constant plotting toward achieving a modicum of comfort. No doubt we are all quite proficient at such exercises. [editor’s note: Jonathan cannot for the life of him spell exersizes [sp] correctly on his first attempt—never ever ever.] The cold rag on the forehead to allay the clangorous headache. The honeyed herbal tea to soothe the throat afire. The masochistic re-reading of your Amnesty International newsletters to squelch an exaggerated self-pity.

So entered the therapy animal thought into my beleaguered brain. Not only have I watched these service animals on middle-tiered channel packages from Direct TV (I cannot speak for Dish Network, though commercials on Direct TV programs have assured me that Dish only offers channels involving the wholesale evisceration of all of God’s innocent creatures and those not even in HD), I have also witnessed the animals first hand.

I most remember the occasion of my first preliminary CAT-scan in preparation for radiation five years ago. I had been sent to the nether of UAB’s oldest cancer treatment facility to have the scan performed. I remember being somewhat insulted what with being a seven year veteran of the shiny Kirklin Clinic with the magnificent fountain out front and the oft attended grand piano in the cathedral-esque narthex.

My wife and I were the sole waiters in the paint-flecked waiting room. After a few minutes, we were joined by a young girl and her mother. The girl wore the tell-tale bandana of the cancer-bald patient. Her face was fraught with worry and fear beyond her years. Sallow and gaunt, she sank into a musty couch.

In a moment, my delusions of abuse were disabused. I went from petulant entitlement-lorn to jerk-faced properly-pegged in one second flat. (Only now and only once a month can I even begin to fathom that young girl’s anguish, her seeming no end in sight.)

Realigned with a more sensible perspective, I awaited my chance to offer the girl a smile. Smiles, I knew, were therapeutic in their own right. Yes, I would give her a smile. But she never looked my way.

Then the door opened. A woman entered. I scanned her for tell tale signs of disease. There were none. Not quite at the lady’s heels, a dog followed. It was obviously old—a hitch in its giddy up, bewildered glances about the room, wiry fur beginning to thin. What breed of dog it was, I can’t remember [editor’s note: rememeber [sp] –never ever ever on the first attempt.]. It was medium sized and cute for being ugly.

“Look at the people, Lady,” the newcomer said. “Say hello to the people.” You’d have thought the four of us were a teeming crowd.

The mother of the sick girl encouraged her daughter to acknowledge the dog. The girl was bashful and probably a little beyond the point of cordiality. Who can blame her? The dog looked at me then looked at the girl. Then me, then the girl. It turned its tail to me and waddled to the girl. Smart dog, sensible perspective. After more encouragement from the mother and the newcomer, the girl finally reached to pet the dog. Both animal and human we’re instantaneously enraptured. The dog nuzzled the girl for additional attention. The girl obliged with a jaw-defying smile.

In all my years at the shiny Kirklin Clinic, I had never been gifted with an event like this. I would never go back to that old building in person, but I have often gone back in memory.

And so the thought entered my beleaguered brain: I wouldn’t mind a cold ward now and then if there was the prospect of an ugly dog to pet. Because smiles are therapeutic. And animals make me smile.