Be Who You Arent

This Halloween I am donning a costume for the first time in years. I won't preview my choice, but this year chemo and Halloween fall on the same day, and my decision to play dress up is to give my nurses a moment of delight. I love those women. They care for me, fuss over me, celebrate with me, commiserate and soothe.

In my old life, I was too busy trying to be hot and way too over it to dress up for Halloween, and I wouldn't have taken time to notice so acutely that a silly costume might make someone smile. I would have rationalized a different method to achieving something pleasant. It may never have worked so well.

Tonight I'm in agony because Charles is eating one of my favorite trashy dinners, Zatarain's Dirty Rice mix and canned corn, which he's backing up with a baguette. Virtually nothing he has eaten in the past year has bothered me so, made me want so badly or curse my dumb fate harder. I'm not sure I can tell you what kind of crack they sprinkle in that box dinner mix, but it's powerful. I have ignored roast chicken, lasagna, exquisite green salads, meat loaf, steak--this is what kills me.

Despite this bit of throwback envy, I find more and more often that my moorings to my old life are pulling loose and when the pieces fall into the water, they aren't much missed. I don't mean I hate the man I was, far from it. I lived in the way many do, not particularly deeply, not always to the surface but not nearly as perceptively as possible. I more often than not was in the tube river, floating--and who amongst us isn't?

The surprise to me has been how utterly ordinary my life was, when of course it seemed to be such an involving drama to me. What seemed to be great forces bringing change turned out to be typical events; romance of the epic sort was normal in its erectile potential.

This newer life, some think, is a much more heroic venture. One that requires a level of gutsiness to achieve basic results and that's true to a degree. But I operate like an old guy, not a hero with a limp-- I plan my travels and I plan my movements like an astute bingo player. I move with deliberation, trying to scan my horizons for dangers to avoid. Loose dogs, uneven pavements, drunk kids, none of which I could yell at or reason with to save myself. I think a lot in this newer life, and that thinking is a priori disaster management.

Not terribly heroic, is it? At least not in those comic book superhero terms; this is far more pedestrian stuff. The heroism in my life is saved for upper level events. When surgeons tell me people like me live typically two years. When consulting doctors look at me and tell me I have months to live. When they tell me cancer is in my lungs. What I think is heroism is pushing back, saying no, disagreeing when bullshit is spoon fed to me like applesauce. It is a simple matter of preservation: heroism is the act if recognizing you are worth saving.

Nothing revolutionary there, aside from the fact that it can be incredibly difficult to assert that simple little fact. To commit to that idea everyday while utterly necessary to surviving cancer is beyond the scope of usual power to utilize. You wake up, you pick this idea with its prickly skin out of its resting box and you pound it into your brain until there's no way to forget it. The heroism is in the doing. Against all of our modesty conditioning to scream to the ether: "I am, and I plan to continue to be."

I'll be thinking of this on Friday, which promises to be coldish, perfect for the holiday, the time of year. Already the leaves are piled by the road, some trees are bare, orange everywhere, backed by every shade of maple red. I love this time of year. I love being here for it. I'm willing to wear a silly costume for it.

An Afternoon of Autumn Sunshine

If Indiana gets a bad rap for anything, often enough it's for the environment--and we deserve it. We're one of the most industrial and least regulated states, leading to a cornucopia of crap in our air, rivers and land. We're rural, too, and filled with pesticides that leach off into the watershed. Our love of coal power kills forests from here to New England.

But today, ah, today...there was that special sunshine that hits orange leaves, and sets yellow ones alight. I woke to it, after falling asleep for a morning nap that went until Noon. Last night, I was fussing with too much gunk in my throat that wouldn't come out and kept me awake until early morning. Today, I'm fussing with beauty. I'm fussing with my nap buddy, Rally, who loves a nice morning snooze. He, in fact, doesn't mind an afternoon, evening, night or brunch-time snog, either.

I had a rendezvous with Wound Care today, too, and I was in an unusually good mood for it. Along with the bright light as I drove, I reviewed all my good news, from my scan, from the evidence of my life, from how I feel, from how I think--and added to this, the fact that I can see that my chest tumor has shrunk recently, significantly to my eyes, and is expelling tons of grossness into the bandages like the dying wrath of a volcano god with no further believers.

I am cautious these days with too much celebration, wondering if I need to quietly slip by cancer and hope it forgets who I am. I dream of hearing words that they've told me I'll never hear--"cancer-free"--because I want to beat odds and, yes, I love to say I told you so.

I went 70 mph down 37 South past Bloomington's answer to the strip mall dingys that someone believes every city requires. Headed to see Dr. Wilkins, with whom I'd also celebrate the fact that we won't have a treatment interruption because of insurance issues--marriage is here! I mused upon the fact that everywhere I turned recently, things seem to be...working. They seem to be ok.

It's times like this that I allow myself to think of survival, and how sweet it is to do so, but also what shape that survival takes in the near and further future. Lately, I've had terrible issues with drainage. I work and work to get this stuff out of me but I lack the natural power of a throat and mouth that help one expel so efficiently. Recently, gunk has started to shoot out of my trach tube when I cough--thick, snotty threads that are, sorry, gross to the touch. If I could save this stuff, one could build with it, I swear. Roman concrete.

Though, it's kind of fun to see how far this stuff will shoot, and what kind of cough it takes to really work up a nice arc of a few feet's duration. You have to make your fun, often enough, and find it where it lives. This is my odd fun. Just to let you know, I've mastered hitting the bathroom wall from standing at the sink--a good couple of feet.

I am reworking my social graces because this year, I'm hosting with the help of IU's wonderful Political Science Department Ladies (Jan, Amanda and Jessica), a birthday celebration on November the 20th when I'm 54...54!  Imagine that. Just a few years ago I worked out like a fool to not look 50; I worried about my tummy and my ass, I hoped I'd keep getting erections forever. I thought of everything like I believe a typical man does, hoping the rest of my life had good food, hot sex, cute dogs, warm rooms.

So, the cute dog and the warm room remains, and the rest of the ideas have changed. I could give less than a boner for how much tail I get from here on out, I am learning how to deal without food better and better (while keeping hopes alive!...). I see survival as a power that overweens the incredible smallness of who I was, the little hopes, the modest wants. Survival has demanded of me that I grow bigger than what I'm fighting, such that in looking down, I can see in physical fashion that the greater entity rules my world. I can keep going.

As I keep going, and keep finding new tricks to do with my trach tube, and new ways to ignore how good that chili smells, I hope I become better, too. Better not as in vital signs, but better as in moral signs--that when I care, I care more and more because of who I am; that as I grieve, it is with the true sense of loss, and not an ersatz cry for attention. That I continue to see how small my problems are in the sight of the world.

At my birthday lunch, with--hopefully--20 or so of my favorite people around, I hope to type the word fuck about twenty times on my Ipad, and laugh, and maybe even tear up a bit--I haven't seen some of my IU friends since the great change happened. I want them to feel a bit of what I felt today as sunlight came into the room, hitting Rally's face, warming my leg, waking us up to what was a terrific day. I want them to know how readily these days are available. 

A Snark and Two Bitches

Snark: noun Combination of "snide" and "remark". Sarcastic comment(s). Also snarky (adj.) and snarkily (adv.)

Like most I know, I prefer my life with snark embedded within it. I enjoy the wit that often turns the mundanely stupid into the sublimely ignorant by dint of a snarky comment. The world revolves in such a way to merit snark frequently; the educational system which is turning out STEM test achievers and humanities idiots in droves makes the life of a snarkmeister easy, like shooting fish in a barrel. But what I'm learning more and more, about everything it seems, is that moderation is not a bad thing.

Unlike many people, I love the word bitch--it has multiple, complex meanings depending upon how I use it and where. I don't hesitate to call my best friends "bitch"--a term of penultimate endearment, the top being usually "hon" in my Baltimorese or "whore" or "Miss Thing." I am not, I suppose, for the faint of heart. When I apply it to situations though, when it is a verb, I think of it in two ways--one, the ideation of annoyance within a situation to a describable state of frustration, and two, the pitching of a bitch, a moaning often "poor me" sentiment into which the generally privileged are forced to be temporarily put out of sorts.

I've pulled in many times, in many situations, both types of bitches. I have without reservation elevated simple irritation to a state of nuclear alert, I have ignored all notions of my general well being to be over-antagonized at small irritants. I have enjoyed the sound of my own snark, I have loved the pitch of my outrage, I have disdained moderation to my own, I know now, disadvantage. I am a bitch, no doubt about it.

Within the world that I've been constructing from day one of cancer to now, I have begun to lean more heavily upon optimism and a generally uplifted outlook, and to be less ashamed of it as I go along. I've always been susceptible to the allure of optimism. It was the idea of it that got me through four years of high school, through the daily fag torments, through the hatred of a small farming town for anyone of difference, that the future would be better, that college would be fun, that I'd get laid a lot. And it was better and I did get laid a lot, and that cemented for me a place for optimism to be. I didn't let it be known that I was a closet optimist--amongst my acquaintance there was a certain elegance in an exhaustion with happiness, a sneer toward middle class satisfactions, the admission of pedestrian entertainment as an exercise in slumming. An optimist was, to the crowd I ran in, an idiot.
And frankly, without moderation, optimism is a very stupid thing.

The power of the mind stuns in a world that places faith in physical action. The idea that a patient can be as responsible for their recovery as the drugs prescribed for it is treated somewhere between 9/11 truthers and touched by an angel-ites. Everyone nods belief at it and everyone discounts it heavily. But I am opening my closet door to proclaim it as critical--in moderation. Last Autumn, several doctors gave me a period of months to live. At first, this was very depressing--for an hour or two. And then it pissed me off. After that, it was simply a challenge and anyone who does know me well knows that I love nothing more than proving to a smart person that I am way smarter than they could ever hope to be. Fuck you, dumbass, I thought, just watch. That is, I admit, a twisted beginning to optimism, one that grows out of the roots of stubbornness and pride, but hey, often enough good things deracinated reveal less exalted beginnings. Yet I know that even my talented and optimistic oncologist in San Francisco could not have gotten me to a point of improvement alone. That without my active straining towards betterment and without my belief that it was a possibility, and without my belief that the world is a fascinating place of which I've seen and experienced too little, I wouldn't be here now typing. I do not doubt it.

In an act of fair admission, though, optimism wasn't a straight arrow up my chart of better--I had moments, hours, a day here and there where I wanted to die. At 120 pounds, feeling useless to the world, an expensive burden, unattractive, unloveable, unimprovable, I occasionally hoped I'd just quit, choke on a snot ball, what have you. Each time, each moment of that, I climbed out, I kept going, I changed my thinking. I may not have felt that I had a choice in surviving, but I felt I had a choice in how I did so. It is, to me, Midwestern to the core to understand that your obligations do not end at your desires. They are part of a great network into which you were inserted at birth. Your obligations to your family are legion; as a young person, you're a handyman, a gardener, a housecleaner, a caregiver. As an adult you are an economic engine, a pattern to your younger relatives, a moral exemplar, a participant in group decisions that are, ultimately, just North Korean votes for your parents' wishes. As an older family member, you are the dispenser of gifts, and wisdom and unconditional love--your eminence gris is fulfilled by smiling, somewhat mysteriously, as the children run by you like sugar crazed freaks.

I have thought about optimism, pessimism, bitchiness, snarkiness, in various combinations, in various ways, because I am all of those things, in various combinations and ways, their general influences waxing and waning as moons around Planet Mark. I am, by habit as much as birthright, a snark. I am, by practice and hard work, a bitch. I am pessimistic because it's so supported in our culture, and so easy. But I am optimistic because I see that nothing is possible without it. I should be clear and say that optimism, to me, is a far more inclusive concept than just placing a wreath of niceness around events. I think that sort of optimism, "little house on the prairie fuckery" as I call it, is just as lazy as pessimism, and worse, totally fake. It's the kind of optimism that has the face of Southern Hospitality which is often just a way to say fuck you without having the balls to actually say it. My connotation of optimism is that when leaves fall, they make great garden mulch; that when snow comes, it means we aren't in a drought; that a dog sleeping next to me is an expression of confidence; that I deserve to live; that I deserve to be happy; that my life, for all its weird bumps, permutations, and losses, is a statement of how good overcomes bullshit; that whatever I face, others face much worse, and I'm obligated as much now as always, to ameliorate that when I can; and, when I cannot, to understand that acknowledging the fact is an obligation to placing my own shit in perspective.

I have thought of these things, too, because of social networking, Facebook in particular. I find myself engaging my snark there because it's fun, pessimism occasionally because it's easy, and bitchery, well, that is highly popular on social media. Optimism, though, at least in these public spaces, is often canned and trite--it comes out as a response to a negative post about an event in someone's life. One can't fix the problem, one can't offer the recipe for improvement, but one can say: "that's shit and you don't deserve it," and in that way, trite makes the reason of its existence known--the power of recognition overweens the repetition of its stated sentiments.

There are those whose feeds are full of their personal woes. That's ok to a point: some lives are more problematic than others. Some people less proactive, less motivated, less idealistic, less optimistic--some people love their problems more than the difficult puzzle of their solutions. In fact, often enough, the solution is quite simple, but perhaps emotionally expensive. Your husband treats you like dirt? get rid of your husband--easy enough for the peanut gallery, not so easy for the burdened spouse. Economics, both visceral and real, ties both emotional and practical, facts not in evidence in a two line wail online demand, probably, less ideation and more balance than that with which we typically react.

Cancerwise, my feed is probably full of it--I don't think much about that. I do not, though, try to bitch about it. Like guests and fish, there's a limit to how much any bitch or snark should be posted before it smells. There's a limit to how much woe is me. There's a limit to fuck-my-life, shoulder-shrugging this-is-how-life-treats-me stuff. In optimism, factually, I find a lot about my situation that is fascinating, and for which I'm actually grateful. I've been slapped and forced to examine myself, unpack my psyche, admit my errors, and celebrate my strenght. I found that I am tough, in ways that many people can't or won't be, that I can shoulder loads that I thought would stagger me and don't. I found that I take to surgery like a duck to water, and I pop up after that delightful knockout sleep feeling refreshed and happy. I think more now that I can't talk, I express better without words, I see and hear more in acts and movements and pauses than I ever did as a speaking snarky bitch. I am becoming more and more aware of what my value is, who I am, and while age is helpful here, it's been jet charged by events in my life. I can't hate cancer for that.

I do find, though, a creeping indifference to the constant bitchery and snark around me, a feeling that optimism is degraded while pessimism is exalted to a point that even my cohort in the Eighties, and my friends in the Nineties, would find disturbing. That the only acceptable way to express oneself is to criticize, not to a fine point of performance, but to a blithering attempt at wit, a mordant, dead, and soul-aching long screech of self importance and snipe. I want to beg people who whine about trivialities and dramatize the medical emergencies with no sense of their meaning and possibilities to just shut the fuck up. Too often, too much, I find the same people making their lives a set of drama without even the courtesy of bad soap opera acting. Their statements to the world about who and what they are condensable to poor bitch, or just victim, helplessly little bright buoy tossed in the Sea of Fate. Jesus, what boring shit.

My general rule I propose now is that for every bitch you make, legitimate or not, that every negative event you report, requires two solutions to follow. For example: my mother is in the hospital after a heart attack. That's a legitimate negative, that's a definite spot upon which to pitch the bitch tent. But after the fire is contained, it requires something like--I'm going to examine my diet to mitigate my risk, I'm going to clean my mother's house every couple of weeks to help her out, I'm going to hire a maid service a couple of times a month because I live too far away. After I tell you that I hate that shit happens to good people, if I don't see that you know that 90% of all shit is preventable, I'm not feeding the victimhood. I can't know, of course, all of the threads of circumstance in any other life, given that finding the threads of my own is a full time job. I can though read and see when someone is simply not applying what I think of as the good sense of moderation--that continual snark, bitchiness, pessimism are diseases like anything else--that like obesity, they are social contagions that pull others down into your morass.

Fuck your selfishness, I'm tired of it. Get off your ass and do the hard work, the real work, of making life better. It's so easy to be what you are, it should be easy to cut you off--but that's hardly the answer. I'm just not going to keep rubbing your back and telling you everything is going to be ok every time you're butt hurt. It makes no sense, and frankly, we've all got our own gardens to weed. I'm just going to tell you to change your diaper because it smells in this bitch.

I didn't get better to be mean to others--I got better for myself, because I deserved it, because I could do it. It is hard, and it is continual work. I have less and less time to spend pissing away a good mindset on trivial crap. The closet door is open--I am basically optimistic. I secretly think that if I live long enough, medical science will grow me a new tongue from stem cells, a new jaw, that I'll eat again before I die. I know that if I persist, I'll get rid of the trach tube and a bit of plastic surgery will iron out my face. I know that I'll spend my life being fascinated by what I see and I'll be able to talk about it without an Ipad. I see myself hitting 70 and laughing at the idea that that's enough. I want glory in my life, I want beauty, I want happiness. I want to bitch about it, and snark at it, and feel, at the end of the day, that I win. Because the story is being written by me, and I refuse to do otherwise.

I advise you to start writing your stories and get your mind set to something similar.

A Victory Lap on an Empty Track

Apparently, in space, no one can hear you scream. Neither joy nor terror will be transmitted; the revolution will not be televised.

This is how I feel sometimes, muted, and unable to easily express how I feel in precise terms. I can be happy, but happiness tinged with self awareness is not quite the same as dumb joy happiness. Anger tinged with the desire to laugh is not equivalent to pissed off and murderous. My mute state bothers me when my neighbors talk to me, forgetting that I am unable to speak back. It bothers me when I walk Rally and can't tell him either no or yes, depending on the circumstances. To his credit he knows  my grunted "come on" and moves appropriately. I do love a smart dog.

This mute frustration was never more acutely felt than last week at chemo when, having learned that my latest scan showed no neck or lung cancers, I wanted to leap in the air and scream with joy--damn the kiss and slap, damn the knowledge that bad news always follows good news in my life. I just wanted to tell everyone how much I felt when I heard that. I was that cup, full to the brim, quivering towards the overflow. 

I have wanted to know I would survive, empirically. Bluff as I can be about living to 70, I've kept a box of uncertainty in my mind, and have no intention of being otherwise. As I have said, I want to be ready to live or to die, with equal preparation and equal dignity. As part of my Mark the Rational trip, I recognize the lack of polarity in my existence. I do not operate in absolutes anymore, I am forever moving through levels of meaning and shades of operation and curtains of events. 

Yes, I played Miami Sound Machine's "Conga" and made the nurses dance me out, but what I couldn't do was tell those nurses how much they've contributed to running this race, and making the run so much more pleasant. There's something about an oncology nurse that is just so smart, and they do the best blood draws, and give the best needle sticks. I have been amazed as I entered the machine of American medicine at how little most doctors really know about people, and how much nurses do know. It probably helps that most of the nurses I've dealt with, hospital and infusion center, have been women. Aside from the sex thing, I'd much rather hang with women than most men. 

I hate being mute, too, when Dr Dayton (smart guy, another great oncologist upon whom I luckily ascended), gave me the great scan news and I typed an excuse me, and got up and butt danced in the examining room. I'd like him to know precisely that his confidence in my optimism is a big part of the reason that optimism thrives; sometimes even a feeling needs a witness to testify that it's not stupid to feel that way. 

Rally makes me walk fast around the neighborhood, which at first was a challenge, and one I worried I'd fail. But a few months of walking and I find the right leg where they harvested the bone for my now dead jaw is stronger and more stable, and I'm able to walk uphill pretty smartly, and I'm able to keep pace with a schnoodle on a mission to find, corner, and kill, any piece of vermin (cat included) that he can. Mute, I'm frustrated when I hear Charles tell him how much he loves him, and mouthless, frustrated when he plays kissy face with that sweet little grey face. So I hang upon him like a 150 pound life preserver and hope that he knows I'm just as committed, if a bit more silent. I'd like to think we understand each other in this reality--though, really, isn't all about treats?

I thought of kiss and slap on my walk with Rally this morning, an early half circle of the neighborhood before I had to leave for chemo at 7:45. Last night, as I was struggling with sleep, my right arm pit hurt--and it was a hurt I felt in California when I discovered lumps that announced Cancer 2.0. It would be perfect, after a clear scan, to find that this shitty cancer had recolonized the right side, a perfect illustration of how I believe that happiness is just a cream and reality is the shit it parfaits. But in a half awake stupor, with a grey dog snoozing by my side, there were no lumps. This morning, it doesn't hurt. It was an ephemeral visitor, a transient stab, a reminder: be grateful and celebrate now.

No one, of course, is guaranteed a thing. Health does not predict longevity any more than illness predicts death, except in the extremes. In this shady life, though, one takes the necessity of staying out of the darkest patches and edging to where the most light is available. For me, the light comes every week when they dump chemicals in me and those chemicals seem to be clearning out a horror story that has been etched in my mind. 

This is a victory lap, make no mistake about it. I have worked hard to stay sane, to keep myself steady, I have put in the effort to be here because I can see no better way to act. I do justice to the incredible resilience of my ancestors by my own. If I am running this lap on an empty track, it's only because so many people who got me to this race are in the stands cheering as I do a slow but creditable jog back to life.

The Wonderful Power of a Little Confusion

Tonight, the Harvest Moon over Bloomington is bright, casting shadows in the backyard one wouldn't expect to see--a black ink over a black matte lawn, even teasing out a tip of green at the end of a black blade of grass. It's the kind of moon I think of when I wonder how the Miami felt on a summer night, near the forest, hearing the unctuous sound of locusts, the late season screw crazy chirping of crickets.

It's a moon of confusion, too--a big round ball of the tidal-empowering energy pulling one this way and that--happiness to madness, sanity to illogic. It seems perfect for me right now: I've been existing between two poles lately, but what to call them, I couldn't say. Not Happy/Unhappy--that's too prosaic; not Sane/Insane, because my head stays screwed on despite what anyone would tell you contrary. Not really OK/Not OK....there's just no easy label to affix.

After my surgical visit, I quieted. I steadied. I rationalized. I accepted. This is the way and the shape of my life, and I have to follow it. It's a path somehow created that insists I step within its bounds--so, ok, I'll play along. I cannot be fixed, I cannot change some of what has happened, I can only change how I deal with it. So how will that be?

For me, the struggle against overwhelming odds is often ridiculous, even if it makes good legends, like the Spartan 300. I'd rather concentrate on being the reed in the windstorm, not the oak. So it has been with cancer--I have tried, at each point, to make the brave choice. I have accepted risky treatment, it didn't work, now it's just put up or shut up time. So that's what I do.

It's in my social genetics. My parents were profound sorts of grimly determined people. My sister faced her version of this cancer with fortitude. My brother Jim soldiers on despite the government's best efforts to deny that he was ever harmed in Viet Nam. My brother Matt died, apparently wordlessly and immediately, from a heart that gave out with a pop. I have examples in my family to look towards when I wonder how to act or react to bad news. Good news has been too scarce on the ground of late to really discuss.

I have been groping towards an acceptance, though, that isn't born of being a victim or feeling victimized. One that is suffused with the grace of, say, a backyard full of moonlight. A lightness of being untouched, untouchable, by negativity. To allow the self to float free of conditions, to simply be, while the body does as it must to get through the course of the day--to accept, in short, that I do have not to be in jail as I have commited no crime.

Today, as part of my plan to operate in full light, in fullness of knowledge, in recognition of my reality, I had a port placed in my chest. This is a permanent placement that allows for far easier infusions and IVs, that gives the poor veins in my arms a rest from their weekly poking. Right now, I'm a bit sore, there's a bump under the skin on the right side of my chest--formerly unclaimed real estate is now colonized with value-added building. A pole barn, a place to milk the cancer cow.

I have taken what was the only part of my torso untouched by cancer, no tumor, no holes, no scars from tissue reconstruction, no damage from radiation, and given it to the practicality of fighting cancer each week--I have allowed the last part of my upper body that looked almost Mark-like to be perverted, as everything has been, to fight this shit. Needless to say, I find it worth the cost, but it's sad nonetheless to see the last old piece of me go.

The surgeon said I was rational, and I am. There is no one to fight and no one to blame and no one who really needs me to cry on them, and frankly, I'm not a crier. I find very little release in crying, and with a trach and a screwed up neck, and no drainage, crying is uncomfortable sport. Fuck crying. That's what you do when you find your glass future has met its hammer contemporary and you've made no allowance for that happening. Me, I make allowances for every bad thing--I just always do. Mostly this makes me overly prepared, but sometimes it makes me amazingly prescient. Like now.

It's a little confusing, though, to not be able to tell you how I feel--and not because I don't want to, but because I don't know how to--there's no word that encapsulates me right now. I think sometimes I'm angry and yet I don't feel angry, and I think sometimes I'm lucky, but I certainly don't feel that way. Often I'm confounded or embarassed by encountering people who stare at me, but sometimes that really makes me laugh. Dogs, surprisingly, are often futzed by me--who is this entity and what is that on his face? They look at me so quizzically that I just want to hug them.

I have lately spent my days floating on a cloud of thinking that has no shape or form--I just daydream, I suppose that's the word for it. I see myself jogging, which won't happen again, I see myself working, which I think isn't going to happen, I see myself in groups of people laughing, which I can't really do. What I see is normal me in normal situations that are no longer normal. And I feel nothing about them--they are simply visions.

A life has passed and another life has stolen in to take its place, and it did so in dark on darkness, with a yellow light behind it, casting yet another pitch of black as its shadow. But in its halo I perceive that this new life, as quiescent, as peaceful, as zen as it wishes to be, is still mine, and is still me, and there's some ass kicking motherfucker still left in it.

A little confusion can lead to a lot of good, in other words--it's a corollary to those best laid plans, to "man proposes, god disposes". What you cannot be, simply cannot be--let it go. What you can be, grab like a bitch at a tag sale and don't let go. When things leave, wave them off, hopefully fondly. When they arrive, on cat feet, through the dark green late summer, welcome them as the friends they will be.

Routeless, Mapless, Preferably Shoeless

I find that it isn't that my life lacks meaning, it simply has a meaning for which I did no planning. I don't recognize its shape as anything of my making, and it wasn't, other than the fact that I'm the host to a murderous bunch of cells.

I pondered this in the cold waiting room at the Wound Care Clinic today. Why we must refrigerate indoor space is beyond me, but this is especially difficult. The chest tumor that needs oversight has to sit open to the cold air while it's lidocained, poked and discussed. For about an hour I have no shirt on in a room that feels like it's stacked with ice cubes...and I forgot to take my hoodie today.

With Dr. Wilkins, I discussed all the news of the surgeon visit. We laughed because--let me tell you--the way to get a specialist to laugh is to crack on surgeons. As a group, surgeons are the cowboys of medicine, and anything that gets in the way of a clean cut into a well-prepped limb or torso is just static to them. They are right, you are uninformed, thanks for playing. They are easy to revile.

The surgeon is right though in one way we all three agree upon--the chest tumor isn't bacterial or fungal in nature--this is just shitty cancer, a Tower of Babel rooted deeply into my chest wall. Damn I hate my clear eyed view. I hate my practicality and my ability to accept deeply evil shit as just another condition with which to deal. While it makes giving me bad news easier, it doesn't make processing it any more fun, just more facile.

It isn't that my life lacks emotion, it's that I'm saving emotion for constructing better events--I'm saving emotion for visiting my relatives, I'm storing it for when good things happen for Charles, and an Attaboy with feeling would be appreciated. I keep some for hugging the dog, which alarms him, because a face mask and a trach tube and a pair of glasses wrapped around the small neck of a 17 pound dog is a lot to hang upon a little target. I'm just not going to waste this on the spilled milk of cancer, or its tumors, or its gnawing away at me. Fuck it. I know it will eventually win, but I place that victory well into the future and I intend to make that accomplishment the most grinding, exacerbating bitch work cancer has ever had to do.

As I drove home with the car windows open, trying to stuff the car with the hot humid air that felt so good after the Arctic doctor's office, I thought about lacking meaning, and lacking emotion, and how at least the latter kept the former from being much of a bother. I'm having a Lewis and Clark moment, I suppose--consider that Lewis and Clark had some badly rough idea of where they were headed, a sliver's view of what it might be like getting there, and a lot of reality bites to wake them as they moved along.

I ponder these things because if you want to stay, if you truly want to keep engaged with life, you have to work like a cheap whore who's behind on rent money; a disabled person, a guy who can't speak, who can't eat, is superfluous. Too difficult to engage with, too tired to engage, distant from the easy methods of interacting, sharing an appetizer and a drink, having dinner. There is always another voice, a whisper from the dreams I have where I talk and eat as I used to, have sex like pornstar, and feel, I just feel everything.

I like the sunlight, and I like the sunlight in my dreams, and it's tempting to chase that sun. It is however being rotated upon by a planet that doesn't have so much of what I want...my family, my dog, the emotion I save for when I listen to Fleetwood Mac and remember where I was and what I was doing when I first noticed that Stevie Nicks sounds like a goat.

People, more than one in fact, have told me that the afterlife that awaits me is similar to these dreams, a dimension where this present cancerous me is replaced by the me I wish to be, the 35 year old vision in the floor through Brooklyn Heights adjacent apartment. On the sunny corner near Cammareri Brothers Bakery and the Italian Deli with the huge unindentifiable meats hanging in the window. The man who could breath deeply and run between the Brooklyn Bridge and the Verrazano, and back. The one who occasionally danced in the basement of the Monster.

Yet it's sweeter right now, here. It is sweeter with Christine McVie, it is wonderful to feel the jolt of a schnoodle jumping on my bed at 6am because he doesn't give a damn that I don't have to get up, he wants me up. It's wonderful fun to see how lives click into place around me, how people advance, watching as they change while walking through life. Even routeless and mapless, I know life, I can projec the continent I haven't seen by what I've experienced, and delight as I meander and discover how much I didn't guess and didn't know.

But it is work to want all of those things, when I hear that once I've crossed over, there's a great deal of ease, there's food, there's a cigarette without disease, that there is, no fact, no disease.

I resolve to travel shoeless in this adventure, to slough off my vanities and give up my love of DSW, to focus my desires elsewhere--to hook my desires to more productive goals--know more, feel more, accept more, want less.

An hour at Wound Care in the blue cold of an air conditioner gone wrong. There's a lot to think about when you're looking at an ugly tumor climbing off your chest, trying not to shiver from cold or fear. To look dispassionately at this ugliness and only wonder how to defeat it. You see, it's not that my life lacks meaning, indeed not. I occasionally lack the tools to understand what it is, or how to construct, or how to explain what it is like to build this machine that no one has ever seen, that no one wants or needs.

This is Now, or Forever, or Both

In order to make sense of the world I live in, I accept a linear, finite, time. I acknowledge a start and end point, a series of post-its that propose the near term, a series of cards to hold dates in a future that is anchored to a series of numbers under a collection of days in a longer series by which I age. I know now, I know then, I suspect forever.

I think of this against my meeting yesterday with the surgeon,  Dr. Brigance. The extremely bright examining room, the poking of my hole, the examination of the new tumor, the continuing metastatation of my personal cancer. That now, virtually none of it went as I hoped, barring the fact that we were both pleased that this time around, I weighed 152 pounds.

We spoke of the potential healing effects of hyperbaric treatment, which he has reservations about. We spoke of this redeveloping chest wall tumor which confuses me but is a sign of the power of cancer to him. We spoke of Surgery 2.

That oft-thought-of future event, the giant mental card in my head with two weeks blocked off here or there, my birthday? A Thanksgiving in the hospital? Why not--it's not like I'll be enjoying turkey dinner anyway. I'd give thanks to be fixed. I'd give thanks to wake and be Mark A. Price, again. To haul him into my now, reanimated, whatever zombie state I'd have to put up with just to see him again.

Yet, for all the anticipation, there will be no Surgery 2. Our forthright discussion went into a distressingly short list of potential postives from the surgery and a distressing long list of the risks I'd engage by having it. Surgery 2 was the plan to take the right pectoral muscle and pull it up under the skin to create a new covering for the hole in my neck; it was to reform what was so effectively slaughtered under the great hot eye of the Radiation God. It was the future and the forever to me, it was the promise that a normal was returning. It was a thought I planted as much as I planted the yard this Spring, that I drifted from, allowing it to grow as it would.

And it did grow, back there, in the mind's corner it occupied, a clematis, a bean stalk, a milkweed against the black railing of what is. It took on shapes and characteristics no patched skin ever could fill: happiness, hope, deniability, possibility.

In the incredibly annoying overhead lighting of that University Hospital examining room, though, what became clear is that somewhere along the path of this walk, I've changed in ways I've hardly acknowledged well. That I am no longer willing to risk, that the casino which never tempted me is now repugnant, with its smoke, its manipulation, its booze and old hope. I listened to that list of risks and half way through knew that I could not, would not, will not, engage it. There will be no more of the man who took on this cancer with the idea that he would not be an exception to the rule. He was. There will be no more of the man who walked into radiation believing he would not be an exception to the ability of the protocol to staunch what ailed him. He was. There will be no more of the man who trusted the chemicals to treat him as they done for some many others. He's not.

I've known in other ways, in other gardens, in my better mind, that there will be no remission, there will be no old normals, that I won't sing again, that I won't speak again, that I won't eat again, but I've agitated against that knowledge in darkness, and secret, and squattted in the corner of that reality with petulance. I could have moved on already, and inculcated that my face will remain distorted and my neck will have a hole, and the snots will annoy me. I could have just fucking done that like any reasonable adult, but my boy had to have his moment.

What finally moved me? The truth, the polar vortex of it. The fact that a covered neck hole would funnel all the crap that drains out of me to the throat that doesn't work, that I would run the risk of aspiration pneumonia on an on-going basis, that my voicebox would then absolutely have to go, that it would open the possibility of further complicated surgeries that would involve more risks I've yet to be horrified by, that I would choke, forever, on what I could not get rid of, and could not process.

I hate the hole in my neck, and I'm alarmed that I can live with one, but I can. The inside of the hole has healed in a way the exterior skin, traumatized into votive submission, could not. It's a trap door, a way for me to control my panic when I believe I'm choking--I change the dressing, pull out the gunk that is frightening me, and I feel better.

So, what is now is forever. The changes that come to me near term will be those I make within, if any. The future arrived and it looked like yesterday, so I ignored it until I realized what it was.

And, I'm ok with this. I hate the conditions, but I play the game. Because the world still amazes me, I want to stay with it awhile longer. Because I'm curious how long I can balance, I walk a tightrope even though I've never trained for it. As though I had game, I play to see how far I go. Will it be 70? Is it possible I make it there as I've promised myself?

Last night I thought of how the world has changed in my lifetime, how much is different, how much discovery and innovation has laid havoc and joy upon me. I see that now and forever being no different are at least part of a process by which movement is neither forward, backward, up or down, but a march to the power of mind willing to take responsibility for the world it marches in.

I do not know, by the numbers of five years, what might be possible for me. If by then the truly splendid fake bone appears that makes a jaw for me, that the neuro-net allows my thoughts to be spoken as if by my old voice, if the nutrition I pour into my tube comes in flavors I crave like pot roast or burger and fries, peanut butter and honey.

The doctor thinks I'm rational. It was a great compliment from a fellow who has not complimented me overly much, but has delivered a series of shit bulletins to my cornucopia of fantasy. How little he knows of what is going on inside here! How I am hopeful, how I skip to the continual music of a universe that promises me joy, how I refuse to allow cancer to eat Mark A. Price, how I protect him even if I cannot save his various organs.

He just doesn't know how I love this, and why, and how could I tell him? That what I want is to be greater than where I am and how I am and why. For no one but myself.