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.

The Summer of My Discontent

The wound care nurses enjoy a gay guy with a sense of humor--and minus the gay part, as do most people. I've tried to hang onto to my humor quirk without resorting to beating it for cancer gags. I don't want to be the guy you have to avoid because the end of everything he says, or types for that matter, is accompanied by the classic stand-up drum roll.  I limit myself to two self-referential moments a day, one eye roll, unless what you are saying demands such a response.

So when I told the WC nurses and the good doctor that this was the summer of my discontent, they laughed, because of Shakespeare and the ludicrousness of THIS summer being the cause of anything but gratitude. My garden hasn't required watering because the rain has been regular, and plenty. The heat has been under control, the sun hurts, but it hurts less than I expect.

But discontent--I have it. Maybe my inner or not so inner perfectionist bitch can't continually cope with the limited eye rolls allowed, the lack of signage for tourists to my suffering. I do suffer, yes. Yet, I rarely think of it that way given that I live in a world where an untold number of people suffer worse and more. There's no sense entering the public lottery of victimhood, but yes, I suffer.

The god of small things, this summer, has set up a altar in my home and expects to be laved. I, being at best a half-hearted devotee of any deity, lack the laving skill. So the punishments, the errant pains that erupt in my mouth, the sliding down of my skin, the fact that walking completely upright is difficult for me as my neck is bent 20 degrees forward. The god of small things speaks in a soft voice when it tells me this will never change.

Summer is regenerative and privileges one to witness the cycle of maturation, desire, fruiting, fecundity. I ask these things of my body, but it's unable to give them to me. I'm discontented because the body has never failed me like this before. I wasn't almost 54 when I asked it regenerate before of course and I wasn't chopped up by cancer, surgery to excise cancer, cancer that won't go away, and the cycle of surgery to excise the leavings of a cancer that will not fucking leave. The palliative drugs, the bags of Benadryl followed by anti growth agents, followed by a push of something the color of urine. The Summer of My Discontent.

I cringe when I have to shower because most of my body can't be scrubbed, and the water hurts. It doesn't feel good, but the heat of the water is nice, I will give you that. I don't experience hot and cold in sane ways anymore. The air conditioner is set at 75 or 76 and when it kicks on during Wheel of Fortune, you'll find me in a hoodie. I wish you had tried to tell me this would happen say two years ago--I would have scoffed.

Discontent happens when I drop things and have to bend over and pick them up. There's something special about that movement with a trach tube and a throat full of gunk that won't choke me dead and yet won't leave, perpetually petulant guests. I can't bend my head back to look in the cupboards above me, so I feel for things, or for the food cabinet, I hold the door handles and lean back bodily, seeing all the labels from 15 degrees toward flat on my back.

Because there is no known end point, there are plenty of cracks in my façade for discontent to creep in, cat-footed, blasphemous little asshole that it is. Discontent--it's such an enemy. It makes sense to sit inside the ugly dimensions of its ill-fit house for tea listening to how awful everything is....and as you sit there drinking undrinkable tea, you begin to think, yes, it is awful.

At Discontent's tea, I unload about how I can't run anymore, how I labor to breathe in humidity, how I used to be, how tired I am of walking around with a face mask, with a tissue stuffed in me as if I were simply a freak. By cup two, I am talking about sleeping until I wake myself coughing because of what's in my throat--that again, won't leave--and how I wish I could sleep full hours as I used to do so effortlessly.

Such a creepy life.

The god of small things punishes with the Fury named Discontent and I am under interdiction.,

So, I am trying to stop this, knowing that Tuesday is my surgeon day, and I cling to the unsupported belief that he'll tell me I can be fixed. Changed, changed utterly, a terrible beauty is born!  I try to fight Discontent with the truth, that the purple dahlia that opened in the garden this week is so beautiful it was worth being here to see it, and I planted that, and I chose it. I choose it now.

I participate in the singular joy of peanut butter on a saltine cracker, as experienced through the lens of a dog. A dog for whom it is love to be given such a thing, and the fact that it is love that gives it.

I roll myself in plaudits for the spaghetti sauce I made for Charles this week, which he will need because his schedule is madness. There are four dinner's worth sitting in the refrigerator, and I understand it is good. I included fresh tomatoes from just outside the front door, planted by me, chosen by me, and which I choose back. I smell the distinctness of the plants and that is the smell that I've known all of my life. I am still here smelling, and I remember.

Discontent is a profligate slut for loneliness, and I am lonely. Not so much for company, or visitors, but for the person, the one or two people, to whom I could sit for an hour and type out exactly how I live and how it feels and they would understand it entirely and would see without judgment why I'm discontented. Who these people are I don't know, because I can think of no one I hate enough to do that to.

It is not at all Mendelsohnian to wait upon the god of small things to move out. One has to mind the manners, after all, and the thing is a god, of sorts. The small horrors magnified, the small triumphs savored. What I've learned in the summer with this idol is less about how to be than it is of savoring the now. If I cannot ever be fixed, to learn how to work around. To take my own advice, so often given, which is to shut the fuck up and get on with it.

The nurses at wound care are jolly, but they are keen; it merely breaks up the pernicious march of gimpy legs and tumors and holes where they ought no be to laugh. They enjoy my Duolingo French lessons, they think it's funny that a guy who can't talk does French lessons online. I do too. But on the off chance that Paris calls, and I find myself somewhat patched, I'll need to read my way around. Allowing for small things that go wrong, and the mind that sometimes trips over its own bullshit, I think I can hope for that.

Waiting on Brigance

Dr. Brigance is the guy who sawed some bone from my right calf and transplanted it into my jaw in March of 2013. He's the guy who is the go-to for closing the hole in my throat. He is the fellow who, in my worst moments, I curse, and the one who--upon reflection--I thank for saving my life. My feelings about him are as conflicted as any I have toward any one person. Goat or king, it depends upon my mood and how I'm feeling that day.

We don't see one another often. The last time I encountered him was in April, early, when I was shivering, weighing 125 pounds, wondering what the heck I was going to do with my life, myself. Now our August rendezvous is approaching, I'm 152 pounds, and still shivering in air conditioning. Yes, my internal temperature controls are not what they used to be, and the layer of fat on my ass and tummy, while welcome, have done precious little to insulate me.

This August meeting has become fraught with deferrals. I've recently been attending wound care sessions with the IU Health Wound Care specialists--Dr. Wilkins, the wonderfully arcane doctor with the longest grey-haired braid I've ever seen in my life. Normally, this would worry me: I would ponder why someone wouldn't cut their hair. Religion? Denial? Cult? But she makes me laugh, I need her expertise, and ultimately, who cares? I haven't cut my crazy hair lately either, but of course it doesn't hang down to my butt, either.

Dr. Wilkins believes I'm a great candidate for hyperbaric treatment, wherein one sits in a chamber filled with 100% oxygen for a couple of hours at a stretch, daily, for a series of, say, 20 treatments, sometimes as much as 40. The oxygen, the pressurized environment, this is pushed into the body to regenerate blood flow to radiation-damaged tissue, which I definitely have. In the meantime my wound care friends are also taking care of Krakatoa, the newly re-emerged tumor on my chest. Krakatoa likes to bleed at off times, and its caldera is slowly growing. It fronts a small area of exposed sub-dermal tissue that has never healed properly--another great indication that hyperbarics may be of help.

Dr. Dayton is in favor, Dr. Wilkins is in favor--but what of Dr. Brigance? We await, all of us, an opinion that bashes or elevates the option. As a surgeon, we have to suspect that improved blood flow would be helpful to his plan. Or not. Myself, I don't know. I'd suspect that he'll be in favor, but it will further put off surgery 2; something he may be in no hurry for, anyway. Or perhaps he will be, considering I've made a prime comeback in the past months. Or maybe not, considering a tumor has redeveloped. Or maybe yes, because at this point, throwing anything at the wall is simply a way to see what will stick.

These may be the hidden emotions of Dorothy on her way into Oz, trailed by those co-dependent creatures she acquired. Wondering how the wizard will react, wondering what a wizard looks like, hoping only for positivity and wisdom. I find myself wondering, similarly, about returning home, which to me is code for recovering normalcies, clawing toward and hanging onto small acts that I used to perform without thinking: blowing my nose, clearing my throat, eating. It seems like I don't want much but each of those normals are surgeries, reconditioning, readjusting, relearning, away.

I put a lot upon Brigance, of course, and so does the system we engage in. The surgeon sits at the apex of the specialist pyramid in some cases, this being one. To answer some of my return to normal, to address some of the infections I get, to allow me more control, and more comfort, over my destiny, Surgery 2 is necessary. Thus Brigance has a serious power of veto over how the next step happens, when, if I will sit in a pressurized chamber for a couple of hours a day breathing pure oxygen, and hoping nothing explodes. If I'll sit there thinking of National Enquirer cover photos from the 80's showing Michael Jackson, his chimp, and the hyperbaric chamber he was said to sleep in.

I have another week to find out, or being to unravel what the next few months will look like--either a boot camp for improvement, or an extended wait for an operating table, or a combination of both. I suspect if hyperbarics are approved, and my insurance company agrees, that pushes Surgery 2 into November. A birthday gift, a happy 54th, here is your neck, patched up. Frankly, nothing would please me more, even if it will take my right side out of commision for a bit, and require those awful surgical staples, and worse, keep me in University Hospital for a week...only ok if they put me in surgical ICU. I love those nurses.

In the meantime, there's life. Rally burrows ever deeper into my heart, I am awakened most mornings with a face full of grey fur that has just landed with an unceremonious thump on the bed. For 16 pounds, he has the force of conviction behind his leaps. He's discovered that being carried about is pleasant as it assures that hands must be placed upon your body, which is the logical outcome he seeks for 99.9% of his waking experience. This is a dog that takes physical contact seriously and pursues it single-mindedly. He applies a level of manipulation to its achievement that, while crude, is admirably effective.

The tomatoes are ripening in the front yard, some of the cosmos are five feet tall, and this has been one of the best summers I've experienced in the Midwest. Wet enough, rarely too hot, often not even humid as one expects--is this global warming? If so, we are in the sweet spot, in the sweet season of it.

If there is a theme, it's waiting, just as it's been from the beginning of this blog. Always, a horizon just a bit off focus, but out there, a beacon light. I'm on a ship awaiting harbor clearnace, bobbing as if shifting foot to foot. I know the place I'm going to, I've been there before. I used to live in it, complaining of it, never satisfied with it. Now, it's the drug I most crave.

Love Will Tear Us Apart, Again

It's probably a safe theory that Amazon Prime Music was designed with late-stage baby boomers in mind. A bit too young for the Beatles wave, we got full on smacked with Joni Mitchell's Jazz Period, Carly Simon and Linda Ronstadt--and now we stream them, recapturing or remembering where we were and who we were doing as Carly warbled "Coming Around Again."  That song takes me to my best friend's lake house, a joint, and the dark walls and low lighting of his delightful home.

It's good, too, for those of us who advanced into college practicing serious Smiths worship, and loving Joy Division, even if we didn't have that hair.

Among my cohort, I've read that oral cancer is on the rise, as it is throughout the population. This has been mentioned to me with the hopeful comment that more and more money is being spent on research and treatment development to handle the high tide. This does not make me feel good, but I try to take it for the bully comment it was meant to be. If more money is being spent now, doesn't that mean it might pan out to new treatment in, say, five years? I can't imagine where I'll be with this shit next month, Slick, but nice try.

One reason for the oral cancer tsunami is the implication of HPV in its development; there are a high number of patients who can pair that virus with their cancer, having no other genesis, no especial history of smoking, and no apparent genetic propensity such as runs in my family. Given that a high proportion of sexually active adults have HPV in their systems, these cancers are no kind of accident.

Somehow, amazingly, I appear to not have HPV. I know, it's amazing. I'm a first class slut and I'd be the first to admit it. I've had a significant number of partners in a significant percentage of the kama sutra for boys, and I enjoyed the hell out of myself.  Given the dodge on those odds, I should always buy a lottery ticket.

I've wondered, of course, many times and in many conversations as to why I'm such an easy lay. Some people have simply written off that behavior as part of being gay, a man, a gay man, double jeopardy, doubly slutty. Of course that's a total cop out, a way to excuse away one's whorish proclivities. I'm no more slutty for being gay than a blonde is dumb by nature, and no less of a man for being gay: I'm just a horndog.

I say that without self rancor. I've known plenty of gay men who weren't, apparently, quite as dickmatized as me (sorry, but I love that word). They may have been serially involved, but they tended to one partner at a time, for several years. I had my period of that sort of life, but for me it was just a cover for the fact that I was screwing my brains out while no one was looking.

I used to live in moral terror that I'd be called out for my behavior, decidedly un-Price, according to my parents, decidedly downmarket from the strictly monogamous, married, life they extolled. I excused myself by referencing my inability to commit under the seal of legal approval--another example of high level bullshit. Had I been married at, say, 30, I'd be an adulterer instead of a slut. I at least dodged that bullet; sex will bring you together, but love will tear you apart--even Joy Division knew the truth of that.

Jerry, the lake house owner and I, under the influence of Carly Simon's best on the stereo and a few fatty joints between the tunes, have had serious discussions of these points--whether the oppression of homophobia which kept our compatriots in the closet drove us to meeting older men who were looking to meet younger guys--or not meet them so much as have sex with them. An institutionalized pedophilia that manifested in gay kids who had to find gay life on the streets meeting up with the bridge trolls who monitored access to those magical streets. Did I start my adult life as a big 'ole slut or was that how I paid the cover charge? Was it the fact that we're talking mid-Seventies, height of the Sexual Revolution that spread me like I can't believe those legs aren't butter?

Honestly, who gives a fuck? Sure, it's good to know why you are the way you are, how you got there, by what route--but sometimes you're talking as the car moves along, you miss the landmarks, you can't remember the sequence of turns. Ultimately, it ends up as it ends up: Me, minus a tongue and a bunch of tissue from here and there. Those cigarettes never helped matters for me, sure, but even without them, my sister had a scary match to my cancer, or I have the carbon copy of hers, a situation that screams genes to my doctors, who look no further.

On Amazon Prime, if you type in Joy Division in the search box, the big hit comes up first--and if you listen to satellite radio, the alternative channel will feature it too. We are, some of us, surrounded by memories--so much so that we don't have to venture into the world as it is today. We can listen to the 80's, dance to it in specialty clubs, indulge in the 90's as it pleases us. Only when the present day obtrudes upon us do we have to consult the calendar. The mouth pain, the diagnosis, the doctor's appointments--if only love was the only thing tearing us apart.

Can I Type "Fuck" on Facebook?

I make a habit of reading parts of the New York Times everyday, and then I hop through a predictable procession of websites:  Joemygod.com for gay political news; OMG Blog to see what they've posted about new fun music; Huffingtonpost Taste Section for food porn; Herald Times Bloomington for 1.5 minutes of local.

In navigating these pages, I often run across other links and teasers I'll read--often lists or rankings that have nothing to do with anything I'm really interested in knowing. The Fifteen best small towns in America, the unhealthiest states, 10 reasons your resume gets rejected--they are pat, unsurprising, or ambiguous in that way that anything is when it's just a paid advertisement posing as a story.

In this manner, I've read several lists of DO NOTS from headhunters and HR executives about interviewing, and the type of public image one is best advised to project to accompany the job search. Did you know, for example, that there are companies that do naught but scrub the naughty out of your Facebook feed? True, the real sublimated fuck of you, the asshole that you actually are, the person with the ribald sense of humor is nuked clean. You glow with the unintended but corporate consequences of acceptability.

This annoys the fuck out of me.

Look, if there's one thing that writing this blog is about, it's finding authenticity. I'd like to know as well as I can who the hell I am before I croak. Am I good, am I bad, am I inherently evil, has my life had meaning and if not, can I stuff the damn thing full now before it's too late? I barely have time to practice French and Danish, I sure as hell don't have time to princess pose for Corporate Fucking America.

I'd like to be the model cancer patient, I really would. Selfless, unaffected, dis-effected, angelic, but I am in no way any of those things. I'm vulgar, and messy, and often enough barely contained.  I love to say fuck this, fuck that, fuck you, fuck them, fuck it all. I laugh when I say the word bitch and pinker souls visibly flinch. Yeah, Laugh. To be nice to me is to be honest, and to be honest is to speak as you normally would to me, and to speak as I normally would includes those words, plus motherfucker, which I hold especially dear.

Myself, I'd rather deal with a corporation that hires people who react and feel and have to post a Grace Jones video on Facebook because....damn.  Just for that reason. I'd rather buy my groceries and shop for shirts where people know that slave labor made 90% of what surrounds us and no matter what our Facebook pages look like, we are dirty fucking bastards who are participating in the rape and murder of countless people who count less than us because they weren't born here. People who say fuck in Bengali, Creole,  Hmong,  Tagalog.

Along those same lines, let me just get this off my chest: I still can't be married in every state of the US, but by god if someone utters the word "fag" we now all have to fall out over bigotry. Does this bother anybody? Does it shock you that some fucking asshole tells fag jokes and there's a lynch mob forming for him while gay men are getting the shit beat out of them on New York City streets and all we hear is "Well, let's wait for the justice system to work."  As if.  Oh and by the way--Tranny. Hot tranny mess. Tranny tranny tranny. Damn that felt good.

I theorize that holding in who I am has created way more unhappiness in me than I've ever experienced as a contrarian, I theorize that unhappiness, self-repression and self editing are just forms of cancer, as destructive as what happens in my mouth, face and chest. The creation of homogenization was a boon to milk as a corporate product, so it seems people must be homogenized to maximize profit in just such a similar way.

There are times when I get a taste of the sweet in the bigotry of low expectations. I've applied for a few jobs recently and have heard nothing back, even from those for which I'm ridiculously well qualified--but in my cover letter, against the express advice of the HR experts, I talk about my year and half of learning from cancer. I talk about how that view has expanded me,, why it's wonderful to have to be creative about communicating, how nimble my mind has become to accomodate what I can't do well anymore, like lift heavy boxes or run on a treadmill.

And although I don't talk about it, how I like to use fuck on Facebook these days. In honor of authenticity, to create a Baudelairean moment out of  a quotidian event, to say I'm alive you dumb fuck, look past the bandages and watch me smize! I don't need Tourette's, Cartman, I've got truth on my side.

Love, Weird, Weird Love

I grew up in an old family. As the youngest of six children, my parents were relatively old when I came along, at least by the standards of 1960--my father was 40, my mother was 36, and my father's relatives who surrounded me in my young years were ancient by the time I came along. They were at the house each holiday, the table groaning with buffet servings of meats and potato salad and deviled eggs and cherries jubilee (no flame though, this was Sixties Indiana). They were ponderous, tall, tree like creatures, rooted in their folding chairs, a smile across their faces as I raced past, inevitably eating. 

I remember so well how sorry I felt for them; their conversations were of doctors and pills and diagnoses and losses, how they could no longer stand to eat corn, which struck me funny--I grew up surrounded by corn fields, as did anyone in Northeast Indiana, Miles of it, the summer air lousy with its pollen, the smell of fertilizer spread to encourage it, the dust kicked up by the tillage for the reception of it. As my Aunt Helen delicately put it--"It binds me up!" But hey, if you were born in 1900, it might bind you up too. 

Their lives seemed to be lived in a specific point where there was no unnecessary motion, no surprises, everything managed to create a path of least resistance when forced to move.. As I ran on sugar and peanut butter and as much fat as I could stuff down my skinny throat, vibrating like a freak under a full moon at every possible moment, their life seemed as if no life to me. I loved them, I enjoyed them, but I certainly didn't understand them. 

I was, this weekend, one of the old people in my family. My niece's husband turned 40, and he's a lovely addition to our family, so I very much wanted to honor the party by attending. They live a few miles from where I grew up in Columbia City, as does my brother, his two sons, and their various friends, significant others, and children. My brother's wife comes from a large family, a troupe of girls I grew up around, who went through school at the same time I did and are now, too, old people at the party. But not quite like me.

This was the first time I have been to a family event since I became old--old as in, can't play volleyball anymore, content to sit in a chair in the shade, happy to smile at the kids who are silly with protein and obscene amounts of energy. A guy who, could he speak, would speak of doctors, and hospitals, and diagnoses and losses, but who would die to eat an earn of sweet corn, being sold roadside all over the county as I drove through. This was the first time the kids showed me to a chair when I showed up, and when my older brother came, he and his wife parked beside me for the duration. 

Sitting there, I pondered who the hell I was now. I used to be Uncle Mark, the foul mouthed, barely appropriate raconteur who wanted nothing more than to fuck shit up. I used to be the sarcastic, flip, up for fun sort, for many years out with the smokers in the garage--I was the guy who wasn't going to get old, wasn't going the way of those Price family dinosaurs, years before, A comet, that's what I intended to be. 

No, I am not a comet. I am holding onto old definitions and ghosts because my new life hasn't quite fully taken shape. I don't yet know how this story ends, because it does not: I create it each day I agree to live this way, to make the best of it, to relearn to love who I am through whom I can be, to celebrate what I can do rather more than what is impossible. I mowed the backyard today, but couldn't do the front--it's too hard for me to breathe this summer air with all this grass and pollen and dust and ragweed and god knows what else in the degraded atmosphere of this most polluted state. But I love the fact that I had my ass out there in my floppy hat, my skinny so-white legs in athletic shorts, the dent of a feeding tube clearly visible under my t-shirt. 

Weird love is what I felt sitting amongst my brother, his wife, their kids, her family; weird because I never recognized it before, weird because I felt like my dead old relatives, weird because this is now part of my life. Perhaps a medical breakthrough happens and some of my functions are restored--it hardly matters. This is now part of my expeience, I've looked over the edge, and I've seen it, and frankly, I liked what I saw. I used to love nothing more than to crack on my brother--he's one of my favorite people in the entire world, he always has been. He was the one person in my old family who actually seemed to either understand me or not care that I was a total freak. Now I just want to sit next to him and bullshit the hot afternoon away in the shade they tell us we need. 

Jim, my brother, has the Price gene for bad heart and gimpy lungs; I have the Price gene for cancer. All of those old relatives of ours, every one of them died of either a heart attack or cancer. There were no accidents, no banana peels, toys on the stairs in the dark of night, autmobiles cracked up. They left, some suffering, and some quickly, one of two predictable ways. And so we will, too--eventually. I'm not predicting early exits here, but I see the shape of the doorways we'll go through. 

I thought of weird love this weekend because that's what my relatives knew so well, the way to love the strangeness in each other, the otherness of the other, with no condition attached. Those little smiles, they now seem like their way of signaling just such a thing--just as I would if my mouth would move that way, were I not wearing a mask to cover it. Perhaps this is where Tyra Banks' smizing would come in handy, and not on an ersatz runway on an ersatz TV network. 

Weird love that I cannot believe my niece and nephews, my great nieces and nephews, they are all growing older and yet I cannot think of them as anything but kids. Weird that a place I hated so much as a child is now a bit of refuge, a place filled with people I love and miss. Weird that I can find such so much joy in the simple act of sitting with my brother; I would never have suspected it of myself.

I am becoming someone I don't know because these moments surprise me. I'm not my old relatives quite yet, because I've not developed their introspection. I'm still fighting, a bit, to be the person I was, afraid to lose him, afraid when he goes away I'll lose whatever made me unique, that I'll flatten out into an old relative who needs a chair in the shade, first thing, without anyone knowing that I used to run the joint. 

Weird love, though, I think it always wins in the end. The struggle is a matter of pride that eventually fades to softness, the need that one hates to admit to becomes a badge of honor to the heart. The landscape full of tall corn spewing pollen smelling of cow manure and dust, familiar through the window, Rally the Schnoodle riding shotgun, head out of the window, the very picture of the kind of joy I'd do best to imitate.