the tao of marty mcfly

February 17, 2012

Having arrived early for my therapy session yesterday, I had time to thumb through a number of ancient texts, perhaps Mesopotamian, though Gutenbergian at the latest. I happened on a Reader’s Digest with a cover photo of Michael J. Fox. ‘What My Illness Taught Me.’ Page 78. Beneath the picture of Fox, set in a gibbous field of red, eye-popping yellow block letters read: ‘Normal or Nuts?’ Page 126. I checked the clock. 8 minutes. Just pick one. I turned to page 126. Turns out . . . I’m OK, you’re OK. Phew.

So with four minutes until my session, I turned back to page 78 and started to skim the interview with Fox. Some salient points snagged me once or twice but nothing major until the following quotation from Mr. Fox pulled me in [he is responding to a question about the controversy stirred when he testified before congress while intentionally off-medication for his Parkinson’s symptoms. He begins by explaining his reasons for appearing fully symptomatic for the hearing which I deem to be just and utterly beyond the following amazing point]:

In the years since, I’ve come to realize that when I’m symptom-free on the medication, that’s not my natural state. My natural state is trembling and halting and having difficulty talking. So I enjoy the reprieve, but I’m not fooled by it. And if I’m in public and I am symptomatic, it has no bearing on who I am or what I’m trying to get done. Not to get too Zen about it, but if I stand apart from the moment and say, ‘In the moment, I’m struggling and I can’t do what I want to do,’ not only have I not had a good moment, I’ve missed the moment completely, just by standing outside it and judging it.

I wasn’t able to finish the interview but I had Adrienne, my wife, copy the comments into her computer which, being a Mac, I wasn’t sure she’d be able to do—the feat requiring a written document, and all—but I was pleased to learn that by playing a faerie’s piccolo her computer transcribed the quotation verbatim.

(Once I was at Best Buy, minding my beeswax in the computer section, when a sour-breathed voice from behind me intoned, “You strike me as a Mac guy.” I turned to face an employee’s fat grin and stupidly raised eyebrows. Not sure at the time why I had stricken him that way (unless by chance he was checking out my paunch and referring to cheeseburgers, in which case . . . yes, yes, I am a Mac guy) I answered with a polite “not really” and moved along. In the relative serenity of Best Buy’s discordant blare of variously modulated stereo systems, the reason for the young man’s mistake occurred to me. My untamed beard and my thick black glasses. I had been cosmetically profiled. And that, friends, is (one version of) the story about how I became so irrationally disparaging of Mac computers. Now excuse me, will you, while I download this McDonald’s app for my iPhone. . .)

February 18, 2012

Well, this is awkward. My Apple diatribe carried me past bedtime and I grew too tired to return to the point—Michael J. Fox’s comments. By now, you may have to go back and read them again. Sorry . . . I’ll wait . . .

I am at once enthralled by and envious of this stunning articulation of a notion that’s been on the tip of my tongue for years.

It is the tendency of the chronically sick to pine for the days of their health, or worse, to reject their identity as that of a sick person. And this is a false move (though practically unavoidable, I confess) existentially—this yearning for the illusion of a prior or other self.

There are ingenious coveys of chemists all over the world working with brilliant doctors and fair-intentioned pharmacists (and some dudes who can grow pot out of old Reeboks) whose job it is to restore the illusion of healthful days gone by. Now hated, now loved—the market for manufactured “well-being” is astronomical and growing like there's a zillion tomorrows.

Let’s be clear, I do like my seizures sporadic and over-easy, and I do like my anxiety to be muted and not crippling, and I do like my depression to be shushed and shrouded. Like Fox, “I enjoy the reprieve, but I’m not fooled by it.” What a masterful perception, this is.

The wisdom of suffering is come by cruelly but sometimes outgains in profundity the cost of its tuition.

I could spend hours contemplating Fox’s words. And then, having contemplated past my bedtime, I could revisit them the following day. However, what resonates most for me is this perception of identity—the actuality of being vs. the mythology of selfhood. [Here, I readily admit I am out of my depth, philosophically, but bear with me.]

Most of us scarcely resemble those creatures in the past who went by our names and more of us can’t guess with any certitude what same-named creatures we will appear as in the coming years. In a sense, we are neither of those yonder selves. We are not those cells, we are not those sentiments, I even dare say that the state of our souls—however constructed a “soul” might be—are vestiges of what they once were and gossipy whispers of what one day they will be. That leaves us with “now.” That great platitude. All we have is the present moment. But I’d tinker with that notion a bit: we have many things outside of “now.” We’ve brought them along and we’ll take them with us. Our favorite coffee mug, our favorite grudge. And we’ll try like hell to carry a sack of memories, but that sack is a net full of holes—only the chunkiest stuff will remain and even that stuff will be out of context, abducted from the sky, a frantic butterfly, a beautiful prisoner. What we “have” is only a true possession in as much as we posses it in this instant. And we are the possessors in this instant, yes, but of hackneyed memories and chipped-rim coffee mugs. That chimerical selfhood of ours is mostly lore and false prophecy.

On the other hand, we are what we are right now. To consider the coulds and woulds is a bogus move. A move that misses the moment, as Fox puts it. I’m not being sneaky here. I’m not intentionally pulling any sleight of semantics. As I said, I’m out of my depth. If you think what you just read is a tiresome load of hooey, go read someone who actually knows what they’re talking about.

We are ares. That’s all. If you’ll pardon, for the moment, my nounified verb. Now back to the applicable . . .

I am not that chap who could chase down tennis balls and return them with added speed. I am not that chap who could swim laps under water. I am not even a chap who could run for his life if needs must be.

I’m the fellow who takes medication to go about my day however so fuzzily, to interact with humanity however so timidly, to face the world and its madness however so enticed by a coil of rope and a sturdy oak.

While medicated, I am symptomatic of side-effects. I am not those side-effects, they are beside me like an irritating housefly or a reeking dumpster on line at the McDonald’s drive-thru, but they are not me. While in my “natural state,” I am symptomatic of my condition. A condition that is an actual part of who I am. I, like we, am an are.

February 19, 2012

I would like to apologize on the behalf of yesterday’s Jonathan for his logorrhea. Edie Brickell was supposed to choke him in the shallow water before he got too deep.*

barring a miracle

{Be sure to check out the new visuals page "the culprit."}

February 13, 2012

So this month, the nausea only lasted two days after the chemo round. Today, I felt well enough for some new PT exercises and to eat two-thirds of a twelve inch pizza for dinner. While I expect my post-chemo appetite to diminish more significantly as the year progresses, right now I feel like I’m on one of those shake for breakfast, shake for lunch, eat a sensible dinner diets. The difference being: my “shakes” are still small meals (banana, yogurt, PB&J) and reasonably nutritious and slimming; however, my “sensible dinner” (and here is where I feel like I’m not quite on target) is more like a “sweet Bocephus, pass that cheese log and that sausage gravy so I can dress my salad” kind of dinner. Not so much sensible as senseless. But who needs sense when they’ve got rationale? Mine being . . . I deserve to eat-up when my stomach is calm, when the thought of food itself doesn’t churn my insides. Right? Sounds right. Rational even. And that’s what separates us from the animals, right? Bocephus, pass the butter.

February 14, 2012

Yesterday my therapist asked me where I wanted to be in a month. Put on the spot, I balked. I went to the place where I store my thoughts but when I switched on the light they all scattered. I had to say something so I scrounged whatever came to the rest of my mind. Walk straight. Get out of the “fall risk” category. Operate my left foot in accordance with my nervous system. All good things and yet I felt like I had blurted answers for the sake of answering not for the sake of solidifying my intent. Because that was the real question. It wasn’t tricky, it wasn’t loaded. When you finish here, where would you like to be? I left the session feeling false, like I owed more than I had given. Or worse, like I had taken without giving at all. (Granted, I have a tendency to color scenarios beyond the actual spectrum of the occurrence. My wife will tell you. It’s a vestige of my Romanticism, I suppose—this feeling too deeply, this seeing too distantly. So sue me.)

Nonetheless, the question remains. I’ll light a candle and step quietly into the place where I store my thoughts. Where do I want to be in a month? Physically. Barring a miracle. But first, this question. Why did yesterday’s answers feel empty?

[Time lapse bracket because this is real time thinking folks. Shhhh.]

[ . . . ]

There’s this . . . it’s no secret but it’s indescribable. Since the beginning, since my first seizure and subsequent scary discoveries, since the first symptoms—the wooze, the wobble, the whirl, the many, many more that begin with letters other than W—throughout these years of alternating deliberate ignorance and unwanted certainty, one of the most difficult aspects of my condition is just that . . . it’s not a secret but it’s indescribable. Where do I want to be next month? Not necessarily where the symptoms cease but where they cease to be misunderstood.

[ . . .]

There’s this . . . where I’ll be next month is just a way-station, a quick smoke before re-boarding the train. Where do I want to be next month? Not necessarily off the train as long as it’s moving forward. And I don’t suppose it matters much whether to Lonesome Dove or Laredo, just as long as it’s moving forward.

[ . . .]

There’s this . . . next month my physical therapy will be up to me. No therapist to impress. No funny equipment to photograph. No big balls or tiny trampolines. Next month? Not necessarily walking straight or moving in perfect sync with my nervous system but I’d like to keep trying.

Straighter. In syncer. Stronger in as many senses as I can mange.

Conclusion for the time being? I’m like everyone. Big goal, small goal. Anything but empty answers. What say next month we all be in a better place? Too Romantic, for you? How about let’s be in a less shitty place? Not necessarily somewhere entirely unshitty but somewhere where the shit’s been swept-up a bit.

Oh and there’s this! I took my first big boy shower of the 2012 today. (My photographer refused to document the occasion. Scruples, I guess.) Valentine’s Day and Jonny graduated from the bathtub. Six and a half weeks of rinsing baby shampoo with a plastic cup. Next month, you ask? Does it get any better than that? Probably— but a stand-up shower is a great start.

metaphorically speaking . . . a snorkel

February 9, 2012

You go to a new restaurant. Order the fish. On the way home, you are already feeling sick. Before getting into bed that night, you strategically situate a bailing pail. Just in case. In the morning it’s worse and stays that way for the rest of the day. You can only nibble and sip all day. Because, God forbid . . . well, you can’t even talk about it or you might . . . oh god

Dinner time rolls around. You go back to the same restaurant. Order the fish. On the way home, you are already feeling sick. Before getting into bed that night, you strategically situate a bailing pail. Just in case. In the morning it’s worse and stays that way for the rest of the day. You can only nibble and sip all day. Because, God forbid . . . well, you can’t even talk about it or you might . . . oh god

You do this three more nights in a row. But why? There’s a gun to your back. Your consolation? Fish is supposed to be good for you. Well, in that case, you’ll go back to the restaurant again next month.

February 10, 2012

The scratch at the back of your throat after a week of coughing except running through your bloodstream. Shimmying a barky tree with bare knees except running through your bloodstream. The gas and oil combustion of a rusted chainsaw except running through your bloodstream. The unknowing submersion of your snorkel in the ocean except running through your bloodstream. The hypodermic itch you cannot relieve with the fiercest of claws except running through your bloodstream. The unfinished wine from the flute turned ashtray at last night’s party except running through your blood stream. The palpable sensation of chemo running through your bloodstream.

in this yarky regard

February 5, 2012

Back in business. Pills came yesterday. [See my excitement] The dose went up 110 milligrams. Suckily, I’m feeling it—nausea-wise. Luckily, the dose never goes up again. The first round was lesser to see how my blood cells would respond. Now, like the latter-day Charlie’s Angels, we are at full throttle.

I am going to start monitoring my weight to keep track of the effects of appetite loss and whatever else. I lost five pounds in the hospital, gained most of it back, lost a few more in the month of January which I will attribute to hospital food and daily physical therapy.

Before all of this, I averaged 199 el bees. That’s what it says on my 2010 driver’s license and I’m sticking to it. The DMV lady knew the number was too precisely south of two bills and incredulously tapped the poundage into her stone-age computer. Since then, let’s call it plus or minus 5 pounds. Fine, let’s mostly call it plus 5—( *cough* plus or minus 3 *cough*). For the record, I am 6 feet tall. My mother insists I’m six-one. She also insists I make salmon better than any restaurant has or can since the dawn of man—so take it with a grain of lemon-pepper. I personally stopped counting in high school. After varsity basketball with no college scout in sight, what difference does it make? I’m sure I’ve grown vertically a bit since then; but, primarily, my growth has been of a Jeffersonian sort—which is to say rotundal.

Do not get me wrong, I’m not bothered by my weight. I don’t look at the Old Spice guy and think, “Gee, I wish I could look like that.” I’m actually sort of glad I don’t. Seems like I’d spend too much time looking at myself in the mirror and not enough time eating double-cheeseburgers and thinking, mouth full of double-cheeseburger, “Man, I can’t wait ‘til I can eat another double-cheeseburger without losing the piddling remainder of my self-respect. Tomorrow it is, then!”

I don’t think Hollywood sets an unrealistic body image for “regular” men and women. I think Hollywood set themselves an unrealistic image and have come too far to go back now. Sure, they throw in a Kevin James for comedic effect like a strategically placed black man in an insistently Caucasian rom-com, but skinny is still ticket—otherwise, why does Oscar applause go up several decibels when a big-person (or a black person or a gay person or a cartoon) wins the award? 1) There is no more self-congratulatory crowd than A-list award show celebrities. 2) There is no more fashionably-progressive, inwardly-contemptuous, visibly-condescending crowd than A-list award show celebrities. 3) Add disingenuous, I’m weary of the wonky syntax. [Note: certain religious groups and stay-at-home-mom-marathoners are not far behind.]

And in conclusion. Today I weighed 195.5. I’ll keep you posted.

February 6, 2012

So after two days of chemo pills, I’m starting feel a little tug in the guts, a little oscillation of the innards. The Call of the Bile by Yack London, if you will. Nothing pressing, no imminent effluvium. Nonetheless, I hear the whispers. The rumors of civil war, the choosing of sides. I am glad for the warning, this harbinger wooziness, though. It’s good to get a sample before eating the whole pie. Of course, in the pie scenario, you can take the sample and leave the pie. In my scenario, you take the sample, make a yucky face, shudder, then keep on eating until the pie is done. But at least you know what you’re in for.

And I prefer it that way. I’m a life-long toe-tester. Shallow end first. No cannonball-out-of-the-gates machismo for me. I don’t suppose I’ve ever said “Bring it on!” with the strong conviction of one who expects to be still standing once the it was brought.

If you spend a lot of time in doctor’s offices and hospitals and physical therapy sessions and laid-up in bed, you get plenty of opportunity to put on your game-face. My game-face has its tongue in its cheek. My game-face has its very own shoulders to shrug. But no matter how uncertain my game-face might be, it is weathered and worthy. It has winced before and will wince again. It will tear-up. It will grimace. It will say, “Bring it on!” Not because I expect to be standing when the it is brought or that I will even tolerate the it very well, but because ‘ready or not’ here the it comes.

However, I can say this for the possible edification of all of us . . . that over the years, through all of the battery of sickness and despair, a smiling regular-face usually gets you through just as well as steely game-face. Also, if you keep making that steely game-face, it might get stuck like your momma told you; and then how would you smile at all, tough guy. Now get out of the pool, it’s adult swim.

February 7, 2012

I woke up this morning with two things. Nausea and an absurd idea. Nausea explains itself. The absurd idea was this: Despite having anti-nausea pills at my disposal for just such a time as this, I shall forswear the unnatural remedy and take the natural response of my body to poison in stride. An experiment, I called it. Too see what I was truly up against in this yarky regard. At least for today. Come what may.

That was 7:30ish. It is presently 8:38. And I’m feeling better already. I ate a little yogurt, drank a little juice, got up and walked (caned) about—some of the recommended natural remedies. Oh, and there’s this. At 8:15ish, I took an anti-nausea pill. Frailty you have a new name.

don't mind me

February 3, 2012

A new month. A new round of chemo. How am I holding up so far? you ask. Quite well actually, and thanks for asking. Although, to be honest . . . I haven’t started this month’s chemo. Theoretically it was to begin on Tuesday given the original treatment schedule which is apparently flexible. I find this disconcerting, I’m not going to lie. Maybe radiation spoiled me. You came, they saw, it conquered. Each day as scheduled, as near to the same time of day as possible.

It seems to me that timing should be an integral factor in this process. Though how can you call one instance a process? After all, I’ve only had one round of chemo and the next round is pending. Pending what? A good question, gold sticker-stars all around. Red tape snipping. Pending where? All of you, get up here, head of the class for everyone. The ol’ Circumlocution Office, is where.

[Chapter 10 of Dickens’ novel Little Dorrit concerning The Circumlocution Office is comfortably in my top five favorite pieces of satire in all of English literature. If you are bored and want to be more bored, read Little Dorrit—it’s a dandy. If you are bored and want to be amused, read Chapter 10.]

After several phone calls, transfers, voicemails, retransfers, and personal offences taken without offence intended, one of my sources tells me I am likely to have my chemo pills by tomorrow. If, that is, of course, a certain fax, officially authorized by an official authorizer in the Medical Authority Office , passes muster in the Muster Passing Department--an office very high up, you may count on it, its walls arrayed with Crosses and Shields of Blue and teeming with dour personages—and if a facsimile of the original fax of the original reaches the outmoded, rattling fax machine in the Outmoded Equipage Department in a timely manner (by 4:52 PM) then the process proceeds to the Procedures Department-- an entirely unrelated department having to do with the process of processing intra-office affairs and nothing whatsoever to do with process of proceeding with the personal case of the personally offended chap holding on line 37 in the Crossed-Wires, Untouched Bases, and Dropped Balls Department--from there, if all is still going well, that is, in the hands of a zitty intern, the now wrinkled facsimile will need to be transported to the All Systems Go Department located in the basement adjacent to the All Systems’ Goo Department which of course is where a gelatinous Jabba gorges on misplaced miscellany, deferred documents, and ill-fated, zitty interns who need to get their eyes checked.

Will I get my pills tomorrow? “It being one of the principles of the Circumlocution Office never, on any account whatever to give a straightforward answer, Mr Barnacle said, 'Possibly.’” (LD, CD, 80)

I’ll be waiting.

In my office.

In the Tumor Incubation Department. [take the tour]

Don’t mind me.