27 February 2012

the wolfman and the writer

February 24, 2012

At PT yesterday, an hirsute man without a shirt on sparked a conversation with me. The shirtlessness, I assume, is at the request of the therapist. I have considered testing this assumption by joining the skins-team myself, of my own volition, while my therapist has her back turned; that way, when she turns around, I will be able to judge by the look on her face whether or not the nudity is optional. If I ever get the gumption, you will be the fourth or fifth to know.

This man and I were sharing a bed. (I think I’ll pause for a second, soak in a sentence I’ve never written before now. It feels so . . . so . . . innocent. Moving on, then. Innocence is literally for the birds and literarily for the children.)

I'm speaking of a therapy “bed” like the freezing, plastic, paper-rolled ones at your MD’s office. He was doing stretches at the foot while I was using the front to steady myself if necessary while balancing on a maliciously designed, wobbly board.

He stared at my chest. And stared at my chest. Was he wondering why my shirt was still on? I couldn’t tell. In an effort to not stare at his lupine chest, I looked out the window at women playing tennis and had the nerve to grade them fair to low—skill-wise.

“Are you a writer?” the man asked at last. Mystery solved. I was wearing my three-year old Sewanee Writers’ Conference t-shirt—a go to t-shirt because in a drawer full of hastily folded others it somehow does not wrinkle.

Now this is a sensitive topic. (Not wrinkled clothes, though it’s on the list for sure.) It belongs in a class-room full of Ginsberg-therefore-Whitman-therefore-hippy wannabes, professor-of-the-hour acolytes, and my breed—bespectacled nerds with Romantic penchants—pronounced in our nerdy heads as paw-shan-(with the babiest little, near-silent “t” on the end.) Where to distress of everyone in that class, there is a textbook. A textbook! Had the professor never seen Dead Poets Society­-and-therefore-never-even-read-Whitman? Should we not be outside instead of in this coop? And to the further distress of everyone, the day’s topic is a facet of this sensitive one from a chapter entitled: “Is Poetry Still Relevant and Who Really Cares: Two Dimensional Fruitiness in a Three-Dimensional World” by [professor-of-the-hour’s name here].

I digress. The man pointed to my shirt. I responded with all mustered confidence, “uh, well . . .”

My therapist, who has already been down this road with me and frequently asks how my writing is going, intervened. “He is. He’s published stories.” [a) Story writing is not as difficult to de-fruitify as poetry writing. People think, “Oh, like O’Henry and Stephen King” and proceed to admire you, sight of story unseen. b) Case in point: My therapist knows full well I have published more poetry than fiction and yet . . . “He’s published stories.” And this is not her fault. No, she’s a wonderful person. It’s the electronic revolution’s fault. (See chapter title above, ibid.]

The shirtless man, a truly nice fellow, proceeded, “My sister held an event at such-and-such local library with a bunch of famous writers last year.”

“Wow, that’s cool,” I said sincerely.

“Were you there?” he asked sincerely.

“Well . . . no, I’m not famous,” I said.

The three of us shared a laugh. It’s hours before I realized he probably just wanted to know if I was in attendance, if I had rubbed shoulders with fame, not if others had rubbed shoulders with mine.

Moral of the story: Don’t write a poem about this story.

February 26, 2012

You know it’s laundry day (*cough* weekend *cough*) when you are wearing your hospital-issued sticky-pad socks. These are to keep patients from slipping on the slick floors which have just been mopped as recently 2009. I don’t remember the fact at all but I have been anecdotally assured that in my Ativan-addled state of paranoia, I made several attempts at flying over the cuckoo’s nest. Apparently, as this fledgling legend has it, my nurse is to have her heart blessed by God for her heroic actions on that day. May she.

February 27, 2012

Yesterday, after breaking into my emergency reserve of dazzling white socks, Adrienne, Winter, and I went to Oak Mountain State Park. [My local followers will know the place and my out-of-town followers will very likely have a similar place nearby.] It marked my first real venture back to nature since the seismic events of December and subsequent, on-going recovery. In fact, it marked the first such venture in a longer time-span than that. My physical abilities have been limited for quite a while and even lesser activities within the scope of my physical abilities were often foregone for psychological reasons. The “better safe than sorry” brand of reasoning. Or, and here’s one for all of us heeling nihilists, all of us bunkered against society-inflicted depression, all of us over-medicated bricks in the wall . . . “Why bother?”

No offense to my fellow grumps or properly prescriptioned. Consider this an alarum bell. (“What a tale of terror, now, [its] turbulency tells!”)* Do what you can as often as you can. Extra credit for fresh air. Double points for being sore the following morning. Flying colors for snubbing fate.

23 February 2012

dubiety and Fred Gwynne

February 21, 2012

Actually sore from yesterday’s physical therapy. Now we’re getting somewhere. She had me on a death-defying obstacle course and I defied. Defiantly.

Note to self and hereby to the public: Finish making yourself sick on Valentine’s candy hearts so that your body can recover before March’s round of chemo.

February 23, 2012

Three days ago, I felt a dubious sadness for the loss of an imaginary distinction and a warranted sadness for the advent of a new generation of fearful souls.

For being self-indulgent, the first sadness calls for less, if any, consolation. Nearly half of my life ago, I was young. Like young young. Young enough to still be wise-beyond-my-years. Not the sort of young that I admittedly still am—the sort that curmudgeonly chair-rockers ridicule the mere notion of—the humph! if I was your age I’d be cake-walking Everest with a woman over each shoulder sort of young. (It is also fun to picture Fred Gwynne glowering down at Joe Pesci, asking, “Uh, did you say yutes?”)

To the point, nearly half of my life ago I started this perennial patient-hood of mine. Not even counting two unrelated surgeries and two fish-hook extractions, I’ve done some hard time in waiting rooms; and in the beginning I couldn’t help but notice how young I was. (Have I said the word “young” yet?) Comparatively, that is. I feel safe in saying that on average I was 40 years wetter behind the ears than my fellow patients.

Strangely, my chief emotion for the fact was pride. Sure, there was self-pity, but mostly I scanned the waiting room, smiling, accepting the sympathetic looks as adulation for my inadvertent accomplishment—my early-onset glioma.

Don’t get me wrong, my chief emotion in general, age notwithstanding, was trepidation. Anxiety is timeless, an equal opportunity destroyer of peace. Peace, to get myself on record saying this, is the ultimate antidote to a poisoned mind; faith, hope, love, while perhaps supreme in wellness, pale against peace in times of illness. (Argue amongst yourselves concerning the verity of that statement, but don’t bother arguing with me.)

Back to the point, three days ago, I grudgingly forfeited my figurative seat in the waiting room to generation Y. I was back at the Comprehensive Cancer Center to have blood drawn in advance of next week’s visit to the Kirklin Clinic where my neuro-oncologist holds court. The CCC, you may recall, is where I had my radiation therapy five years ago, where I had expected a burst of mixed emotions at last month’s visit but was in and out too quickly for a burst of anything but a blood sample. This time, however, there was a wait. I sat and absorbed the familiar surroundings. Then, I scanned the waiting room. Old-timers. Dozing, drooling, palsied old timers. Ha-ha—still the pup. A bit wizened about the eyes, of course, but still, representing my demographic with that strange sense of pride.

[Off-stage record-player screeches. A woman in her early twenties goes to the front desk to get her new-patient paperwork. On the arm of her worried mother, she limps to a seat beside me. Her hand shakes. The mother takes the clipboard. One minute goes by. An even younger woman, hair in wiry patches, signs in, limps to a chair, smiling, visibly proud.]

My genuine sadness came. In a burst. Where would these girls be twice their ages from now? Still shaking, still strangely proud? One or the other or both with this moment in their rearview? One or the other or both back in familiar seats, wanting to feel something, anything, when a frail eleven year old wheelchairs herself into the CCC, stretches up to sign her name, then takes her place, waiting with everyone else who wait for their names to be called.

[Resume record. Protagonist prays his best for the best thing he knows.]


19 February 2012

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.*

15 February 2012

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.