I'm alone this week. Charles has toddled off to NYC for fun, meeting up with Stefan, who will be showing some of his clothing designs to interested parties. This being Stefan's first visit to NYC, and Charles being an old hand at the place, there are both touristy things and insider knowledge things on the schedule. I've only insisted that Stefan be taken to my favorite coffee joint, Cafe Lalo on the Upper West Side, and the Promenade in Brooklyn Heights. Just my two cents.
The house is quiet--not that it's loud here at any point. I'm beyond playing dj mixes while I work out in the music room, and much more likely to wear earphones while listening to Pandora as I garden. Charles does nothing by overt methods, and one would be more likely to encounter him with a slasher knife and a look in his eye than to ever hear him raise his voice.
One gets used to the movements and the actions of another person though--and when they aren't there, the doctor's office, a room, the house, they lose an important piece of meaning. At infusion a couple of weeks ago, I was nearly depressed that Alicia didn't start my IV--she was either busy elsewhere or off that day, I'm not sure which. She has poked my veins more times than I care to think of and I'm used to her sly humor. I like all the nurses but we are talking routine here.
I have this nagging fear of being alone that is amplified because I can't speak. I don't believe I've ever called 911 in my life but I'm certain I'll need to do it this week, and how can I? I have elaborate plans to dial and set my phone down and use my voice interface on the Ipad, but in an emergency, will that actually work? I noticed that IU and Monroe County are both set to institute text message 911 for people like me, who can't speak (the newspaper article focused on deaf people but our problems end similarly).
I have this notion, too, that I'll be one of those people who will die alone and no one will notice, so my dog/cat/bird/turtle/mini pig--whatever I may have as a pet--will end up half eating me until someone finally notices they haven't seen the old whack job in apartment B and what smells so badly? Classic New York Apartment story, Seinfeld story line or possibility, it doesn't matter; once you have this stuff in your head it's not easy to excise.
Oddly, the truth is that I'm clearly on an upswing and more truthfully that I refuse to allow myself to enjoy the momentum. My experience with cancer thus far has been a kiss/slap sort of affair. A tiny bit of good news like a kiss is followed extremely quickly by a sudden change of fortune or interpretation like a gigantic slap. A good day is followed by a week of lassitude. Lifespan predictions seemed to be getting shorter and shorter until they were proven wrong...but now my breath held, I wonder: how wrong?
My interior monologue has been gnawing on this Shakespearean difficulty quite a bit, ramping up yesterday during my first day of Vacation Isolation '14. In a previous life, I would take any bit of optimism and inflate it outwards until most pessimism couldn't squeeze through--only the smallest doubts would be allowed. I've pursued the good with the sort of will that would make an 1871 Prussian blush for its didacticism. Yet that energy is no longer in abundance and that certainty is certainly gone, and nothing has come to take its place but a dithering Hamlet-esque response. I am, I know, truly not ready to be the Prince of Denmark.
I have, each time cancer slapped me after a glimmer of joy, felt stupider. I have gritted my teeth at being the butt of its joke, yet again, and promised myself that I'd learn to not fall for the trick again. This is a good strategy if you're fighting a comedian, a physical comic who is certain to use a buzzer in the handshake or put a whoopee cushion on your chair. Cancer is not that clever or predictable. No, cancer is actually just a switch left in the wrong position in a cell (thank you Mom and Dad!), and it is like a democratic drawbridge, going down for everyone (thank you, Lion in Winter!).
So, more the fool I for holding back. Each time I've been caught out by the bad following the good--well, that was just life. It just happened that way. I, who rarely do anything by half measures, am the inheritor of a cancer that is markedly aggressive, and once it was switched on, I doubt much could have stopped it from its path of destruction. Those are the breaks.
In the quiet, to keep myself from hyperventilating or rushing out and adopting a pet to fulfill my macabre scenarios, I tell myself just such rational things. Eventually I laugh at myself, I make sure I know where my Ipad is, where the phone is, whether they are both fully charged, I do not make sudden moves in the shower, or drop the soap and leave it underfoot.
In fact, one of the quietest things about reality is its decided lack of drama. Reality releases the mind to accept that a great deal of what we go through--cancer or not--has a certain banality to it, and not always in an unpleasant way. If no one asked me about my bowels during my weekly chemo session, I'd swear those girls didn't care (don't laugh, it's important, and they are very slick about it). I have come to depend upon my question/answer sessions with the nurses as a way to check my own honesty, and my own vision of reality, against what is desired or expected. And, they are working just fine, amazingly.
In fact, most things are working just fine. My poor mouth is a bit more twisted as my chin moves decidely southward and inward, but hello surgical mask, good bye freak show. I've now taken to sleeping with one of these masks on as an extra impediment to drooling on my pillow cases which, by the way, I totally hate to do. Things are working just fine because when a new problem like drooling on my pillow cases arises I don't cry like a titty baby about it, I just apply a patch, or a surgical mask.
I have found myself lately thinking about how much I can think of my life with cancer--for example, how far ahead do I think? What future do I put myself into? In these complicated days, no matter what your illness or how it makes you feel, you have to do plenty of planning to have, hold and maintain your insurance, for example. You have to project outward for doctor's visits on a calendar peppered with specialist events. You have to--if you're lucky--fit the lives of others into yours, around this future, and occasionally send them off to NYC for the kind of fun you just can't have anymore.
How far? As I told someone recently, I wonder if in five years they will have created a procedure to give me back my ability to eat--and if so, will I be here to have it done? I suspect I might be, if I project out from here, where my tumors shrank and not yesterday, when they were rampant. When it's quiet, I'm practicing calling on the light and asking it to help me heal instead of sitting in bed in the dark, warily. I am fighting to allow myself to interpret reality in a whole new way in Cancerville--not just optimistically because I'm a hardass who refuses to accept it, but optimistically because I'm a hardass who can accept it.
I'll be the first person to tell you that it sucks to be happy for a minute and smacked down for five, but I'll also be the first person to tell you to get the hell over it. I'm working to apply that good advice to myself, happily, as I think of Charles and Stefan wandering through the streets, eating the food and rediscovering the city I love.
Tuesday, May 27, 2014
Friday, May 23, 2014
The Poetry of it
I was one of those nerd kids who, by the seventh grade, had been differentiated from my classmates as not like them. They were absolutely correct: We didn't hold a molecule in common.
I already knew at that point that it was all Adam and Steve for me--as if messing with my sister's prom dress hadn't already clued me in. Yet I was willing to play along for the sake of peace that I shared whatever interests they had--but then Mr. Funnell happened.
As this was the 70's, Mr. F was not an English teacher but a Language Arts Instructor-- and I'll be clear upfront that this is not a sex story. I was, yes, a boiling bag of almost teen hormones, true, but Mr. F reminded me less of Burt Reynolds in Cosmo and more of the Keebler Elf. Anyway, in the course of this eventful year, one of our assignments changed me, and this in an unexpected way.
We were to write a haiku, and given the schematics, were to bring one to class the next day. That night at home I filled a couple of notebook pages and turned them in the next day.
Teachers often act as if they were never the age of those they teach, that they never notice that one wildebeest on their savannah is not treated equally by its fellow beasts. So of course Mr. F singled me out and read some of my haikus during class. Of course my classmates hated me. I was, again, a pet. I was, confirmed, a fag. I could have died.
But the truth was that the assignment had opened up something that had been struggling to open for sometime. I had started to "hear" poems in my head-- which is still my favorite method of writing. I hear a certain melody made in a combination of words, even morphemes, I hear spoken in my voice a beautiful, flowing melody where such sound is so embedded that it is part of the meaning, a theme without which the sex, love or death being written of lacks substance or dignity.
Although I had never tried to explain to anyone what I was hearing, it was clear that other people were not hearing quite the same things. I was vibrating on a personal parabola and in Northeast Indiana, in the 1970s, that sort of flagrant individuality was the marker of not just a bad penny, but a tainted one.
I survived obviously. In fact I still date being a poet to that assignment, place and time that all of these threads came together for me with all the force majeure of a Byzantine icon. I still hear the music occasionally, I still write and I definitely read poetry. "the blood jet is poetry," said Sylvia Plath, " there is no stopping it." I've always been proud to believe that.
From the point of waking up after surgery though through just a few days ago, I wondered if that music had withered, if I had aged past it somehow. As if I were in a sports car and didn't recognize an old friend grown into homelessness as he stumbled along a busy streets-cape.
But it appeared again. Recently, with force and need, just as I remembered it. It returned the moment I gave myself permission to live, if I cared to try. Poetry, I've learned, isn't just about death and loss. In fact, it is a bald faced celebrant at the bacchanal of life. If one can't or won't engage at least a grudging respect for such a basic product of joy, the universal orchestra has no choice but to decouple its calendar from such as that.
The poems I've written eat heavily of a year of silence, and any poet will tell you that such fecundity as I have momentarily is a blessing and a curse. On one hand, my chosen art is new to me again. On the other, it is new again. Lessons learned from several decades don't always apply, or they require, as a medical doctor, Continuing Education Units. It's not so bad as learning to walk or biking can be in mid-life, but it can be frustrating to find oneself captivated by tripe.
Deft handling of theme and the ordering and agreement/tone of the chosen words are impossible to produce, let alone write, without recognition of what drives them toward greatness--the simple act of turning the subject and circumstances of that subject's life, into Art. Cancer did not, does not, feel artistic. For me its velocity took all of my attentive resources and called to mind a question both of necessity and its applicability. Many great metaphors have been and will be applied to describe the experience of cancer. But they are best constructed with the illness in the rear view mirror.
My poems lately are affirmation that I do want to live, and their timing suggests that in addition to wanting it, I've learned to desire it at the detriment of my old pal Cancer Wildcell. Now I cannot and would not tell you these are done well. I don't tread on subjectivity by insisting it replace an objective judgment for one that thoroughly has an agenda.
They are though, some of them, both good and interesting.
I will post some of them here if they receive outside publication, or if I feel that they would advance the story for us. Just know that they exist again, under the best circumstances of being wanted.
As today is Friday I'm in chemo, Erbitux dripping into me as I type. It is beautiful here today, just before the cusp of Memorial Day, and pink roses are flirting with the edge of the driveway as evidence of that. There is evidence, too, that the song is gaining lungs as I work. Surprised but delighted to be 12 again.
I already knew at that point that it was all Adam and Steve for me--as if messing with my sister's prom dress hadn't already clued me in. Yet I was willing to play along for the sake of peace that I shared whatever interests they had--but then Mr. Funnell happened.
As this was the 70's, Mr. F was not an English teacher but a Language Arts Instructor-- and I'll be clear upfront that this is not a sex story. I was, yes, a boiling bag of almost teen hormones, true, but Mr. F reminded me less of Burt Reynolds in Cosmo and more of the Keebler Elf. Anyway, in the course of this eventful year, one of our assignments changed me, and this in an unexpected way.
We were to write a haiku, and given the schematics, were to bring one to class the next day. That night at home I filled a couple of notebook pages and turned them in the next day.
Teachers often act as if they were never the age of those they teach, that they never notice that one wildebeest on their savannah is not treated equally by its fellow beasts. So of course Mr. F singled me out and read some of my haikus during class. Of course my classmates hated me. I was, again, a pet. I was, confirmed, a fag. I could have died.
But the truth was that the assignment had opened up something that had been struggling to open for sometime. I had started to "hear" poems in my head-- which is still my favorite method of writing. I hear a certain melody made in a combination of words, even morphemes, I hear spoken in my voice a beautiful, flowing melody where such sound is so embedded that it is part of the meaning, a theme without which the sex, love or death being written of lacks substance or dignity.
Although I had never tried to explain to anyone what I was hearing, it was clear that other people were not hearing quite the same things. I was vibrating on a personal parabola and in Northeast Indiana, in the 1970s, that sort of flagrant individuality was the marker of not just a bad penny, but a tainted one.
I survived obviously. In fact I still date being a poet to that assignment, place and time that all of these threads came together for me with all the force majeure of a Byzantine icon. I still hear the music occasionally, I still write and I definitely read poetry. "the blood jet is poetry," said Sylvia Plath, " there is no stopping it." I've always been proud to believe that.
From the point of waking up after surgery though through just a few days ago, I wondered if that music had withered, if I had aged past it somehow. As if I were in a sports car and didn't recognize an old friend grown into homelessness as he stumbled along a busy streets-cape.
But it appeared again. Recently, with force and need, just as I remembered it. It returned the moment I gave myself permission to live, if I cared to try. Poetry, I've learned, isn't just about death and loss. In fact, it is a bald faced celebrant at the bacchanal of life. If one can't or won't engage at least a grudging respect for such a basic product of joy, the universal orchestra has no choice but to decouple its calendar from such as that.
The poems I've written eat heavily of a year of silence, and any poet will tell you that such fecundity as I have momentarily is a blessing and a curse. On one hand, my chosen art is new to me again. On the other, it is new again. Lessons learned from several decades don't always apply, or they require, as a medical doctor, Continuing Education Units. It's not so bad as learning to walk or biking can be in mid-life, but it can be frustrating to find oneself captivated by tripe.
Deft handling of theme and the ordering and agreement/tone of the chosen words are impossible to produce, let alone write, without recognition of what drives them toward greatness--the simple act of turning the subject and circumstances of that subject's life, into Art. Cancer did not, does not, feel artistic. For me its velocity took all of my attentive resources and called to mind a question both of necessity and its applicability. Many great metaphors have been and will be applied to describe the experience of cancer. But they are best constructed with the illness in the rear view mirror.
My poems lately are affirmation that I do want to live, and their timing suggests that in addition to wanting it, I've learned to desire it at the detriment of my old pal Cancer Wildcell. Now I cannot and would not tell you these are done well. I don't tread on subjectivity by insisting it replace an objective judgment for one that thoroughly has an agenda.
They are though, some of them, both good and interesting.
I will post some of them here if they receive outside publication, or if I feel that they would advance the story for us. Just know that they exist again, under the best circumstances of being wanted.
As today is Friday I'm in chemo, Erbitux dripping into me as I type. It is beautiful here today, just before the cusp of Memorial Day, and pink roses are flirting with the edge of the driveway as evidence of that. There is evidence, too, that the song is gaining lungs as I work. Surprised but delighted to be 12 again.
Tuesday, May 20, 2014
Living good or living well?
It's 12:18am, May 20, I'm propped up in my bed against a formidable pillow pile which includes my panda pillow. The house is dark, and I'm listening to DJ Corey Craig's soundcloud on this machine. One of the reasons I enjoy DJ mixes is that they don't require me to think; my mind just hits the right BPM and I let it go. Another is that it reminds me of the years, say roughly 21 to 35 when I enjoyed going out just about every weekend and dancing, or watching dancing, or trying to dance or trying to watch it. There were always distractions...
I wasn't focused then, or rather not focused in the way I am now. I used to accept, at face value, the stories people told of themselves, or others. Well, perhaps not the most outrageous ones; I remember one young fey thing in Bloomington when I was just legal who loved to claim to be related to Dianne Von Furstenberg. And this sort of early Eighties affectation wasn't all that strange--Charles told me he'd met equally fey young things in ratty second hand clothes claiming to be the cast-offs of minor European royalty, Klein, or St. Laurent, or Lauren. There wasn't a smart phone with a data plan available in 1981 for instant fact checking. It was charming.
But if your story had plausibility and your manner in telling it seemed sincere, I was perfectly ready to believe it. So, of course, I swallowed some doosies.
My failures in spotting a whopper weren't born of strict innocence, but of a policy I consciously adopted to accept what people said as true and take responsibility for my own reactions to it. This, I thought, was the only course of action anyone could take without going utterly batshit crazy trying to protect against the inevitable scams and tales told throughout an ordinary life.
I shouldn't fail to say that I've told some doosies in my time too, as I suspect everyone has--you inflate your position in the Dickens novel of your last relationship. you recast yourself in Medieval France from Valois peasant to Joan of Arc, you claim the ancestry of Lincoln, your father or grandfather boned Marilyn when she was Norma Jean. Our personal histories are percentages of authenticity, with threads of family aprocrypha woven in, with aggrandizement leavened throughout, with subjectivity spanking the bare ass of objectivity with a boar bristle brush.
I recently posted a thread on my Facebook page about being a good person--admitting my own doubts of being one, or even or what truly defined goodness in a person. I have to say that the responses that I got from my friends were so beautifully considered, that I wanted to push that conversation further--but honestly, I doubt Facebook is really for that sort of exchange on a permanent basis.
I don't think my comments or the comments of my friends hashed out any revelations--except one that slapped me awake: a good person can only be identified by subjective criteria on a personal level. Seriously. Even Mother Theresa has detractors, there is no one I can think of who has been universally named a good person (sorry, Jesus doesn't count--and there's the pesky fact that not everyone believes there was a Jesus, or if such a person existed, that he wasn't as dedicated to bringing the sword as the palm branch).
I admit, the topic is an item born of my own self fascinations during the past year. It's about wrestling with mortality, but it's also about what type of reality to create as I move forward. I haven't been all about dying this year, I've also wondered a great deal about what I would be given a second chance to be. Would I follow the dictums of a goodness that demands a meekness to the vissiscitudes of fate, a kiss blower to the buzzkills of a peaceful life? Would I refuse to go quietly? Is being good a product of good works?
I think it's all that and more--but ojectively, I can only say that being a good person is above all not something you call yourself--it's a quality that others identify in you. That which one would wish to emulate, easy or not to do.
If there's anything I could have from PCB, it's more of this conversation. I encourage anyone who reads this to post a comment about what constitutes a good person in your estimation; what qualities, which acts, what combination, or if you hold no such objectivity and simply identify on the fly, or, know it when you see it.
It's 7:34am. I think I need a nap. Today, a good person might be the one who mows the yard, or plants the purple hyacinth beans, or cleans his bedroom because we will soon have a guest here...subjective, indeed.
This was my original posting:
I wasn't focused then, or rather not focused in the way I am now. I used to accept, at face value, the stories people told of themselves, or others. Well, perhaps not the most outrageous ones; I remember one young fey thing in Bloomington when I was just legal who loved to claim to be related to Dianne Von Furstenberg. And this sort of early Eighties affectation wasn't all that strange--Charles told me he'd met equally fey young things in ratty second hand clothes claiming to be the cast-offs of minor European royalty, Klein, or St. Laurent, or Lauren. There wasn't a smart phone with a data plan available in 1981 for instant fact checking. It was charming.
But if your story had plausibility and your manner in telling it seemed sincere, I was perfectly ready to believe it. So, of course, I swallowed some doosies.
My failures in spotting a whopper weren't born of strict innocence, but of a policy I consciously adopted to accept what people said as true and take responsibility for my own reactions to it. This, I thought, was the only course of action anyone could take without going utterly batshit crazy trying to protect against the inevitable scams and tales told throughout an ordinary life.
I shouldn't fail to say that I've told some doosies in my time too, as I suspect everyone has--you inflate your position in the Dickens novel of your last relationship. you recast yourself in Medieval France from Valois peasant to Joan of Arc, you claim the ancestry of Lincoln, your father or grandfather boned Marilyn when she was Norma Jean. Our personal histories are percentages of authenticity, with threads of family aprocrypha woven in, with aggrandizement leavened throughout, with subjectivity spanking the bare ass of objectivity with a boar bristle brush.
I recently posted a thread on my Facebook page about being a good person--admitting my own doubts of being one, or even or what truly defined goodness in a person. I have to say that the responses that I got from my friends were so beautifully considered, that I wanted to push that conversation further--but honestly, I doubt Facebook is really for that sort of exchange on a permanent basis.
I don't think my comments or the comments of my friends hashed out any revelations--except one that slapped me awake: a good person can only be identified by subjective criteria on a personal level. Seriously. Even Mother Theresa has detractors, there is no one I can think of who has been universally named a good person (sorry, Jesus doesn't count--and there's the pesky fact that not everyone believes there was a Jesus, or if such a person existed, that he wasn't as dedicated to bringing the sword as the palm branch).
I admit, the topic is an item born of my own self fascinations during the past year. It's about wrestling with mortality, but it's also about what type of reality to create as I move forward. I haven't been all about dying this year, I've also wondered a great deal about what I would be given a second chance to be. Would I follow the dictums of a goodness that demands a meekness to the vissiscitudes of fate, a kiss blower to the buzzkills of a peaceful life? Would I refuse to go quietly? Is being good a product of good works?
I think it's all that and more--but ojectively, I can only say that being a good person is above all not something you call yourself--it's a quality that others identify in you. That which one would wish to emulate, easy or not to do.
If there's anything I could have from PCB, it's more of this conversation. I encourage anyone who reads this to post a comment about what constitutes a good person in your estimation; what qualities, which acts, what combination, or if you hold no such objectivity and simply identify on the fly, or, know it when you see it.
It's 7:34am. I think I need a nap. Today, a good person might be the one who mows the yard, or plants the purple hyacinth beans, or cleans his bedroom because we will soon have a guest here...subjective, indeed.
This was my original posting:
I'm trying to puzzle out if I'm a good person, but a proper answer depends upon what a good person actually is--
Is it doing good deeds for others with no expectation?
Is it the implied benign neglect of doing no harm?
Is it that no one has complaint of you and does that ever happen?
Is it a conscious forgiving of the self for one's own flaws? Or a fulsome forgiving of the flaws of others?
I find I don't know. I tend to think it's part of all of those things and part of something I haven't even listed...
Thoughts?
Is it doing good deeds for others with no expectation?
Is it the implied benign neglect of doing no harm?
Is it that no one has complaint of you and does that ever happen?
Is it a conscious forgiving of the self for one's own flaws? Or a fulsome forgiving of the flaws of others?
I find I don't know. I tend to think it's part of all of those things and part of something I haven't even listed...
Thoughts?
Following are the responses to the post which I enjoyed immensely. I've redacted the names of the orginal poster as I didn't ask permissioin to directly attribute the words to them--but even anonymously, I find them of great value:
Sunday, May 18, 2014
Strict Machine
It's Sunday in Bloomington, Indiana. After a few days under the evil spell of a late Spring cold front, we may be closer to normal weather today. I for one could not be happier. I used to be a big fan of Winter, actually--dry, cold, slate grey skies, the lead color of the trees, a snow crunch under the feet as the dogs and I went to the park...heaven. That was another lifetime, another 40 pounds, a lot more muscle, a lot less pharmaceuticals ago. Now, digging up weeds wearing my floppy old man hat in 80+ degree heat is more to my liking. I, who derided snowbirds, may one day rue the fact that I'm not one.
Given that it's early, sort of, I'm goofing on Facebook and reading the New York Times online and avoiding doing anything of real value to the world. My headphones are on, Pandora is playing my Roisin Murphy channel, and I'm truly gearing up to clean up my bedroom, and later to plant some butterfly weed, and perhaps mow...but first, I'm going to have a can of TwoCal. And of course some more tunes. And an Ensure...and some more paper.
Yes, deadly procrastination. As I come back more to life, I recognize that I need to hold myself to the regimentation expected of a more typical modus operandi. That to claim goals, to hold them out as evidence of my worthiness to participate, I actually have to try to accomplish them, and accomplishing them takes discipline and a higher order of regimentation. It's wonderful to splash in the kiddie pool at age 53, I freely admit. As much as it frustrates me, I also find delight in never checking the clock during the day (I typically only make certain I haven't missed making coffee around 5 and to check how long it will be until Wheel of Fortune is on--seriously, it's that bad).
Often enough, my form of regimentation is a response to the animal urges of my body--nap at 10AM? Sure! Extra Ensure at 4pm? No problem, precious. So I envision not so much a fascist dictatorship of time management but the ability and the desire to say "NO" to some of my whims--that nap is ruining the flow of reading a book, studying French or Danish, working in the yard, cleaning the house, finding a job.
And those are all things on my list of to-dos that aren't getting done with the artful grace I envisioned of them in the past few months. I'm not practicing putting sentences together in Danish, I am ignoring my special French emails, and I seem to have hit a patch in "The Bully Pulpit" by Doris Kearns Goodwin that is inexpressibly boring. I need, I know, a strict machine to push my roller coaster car towards the next valley in preparation for the next hill.
There's a great argument to be made that I've only recently and incompletely emerged into Survival Mode, that for a period of time that feels like a decade, I've been told I'm dying. I've earned the goof time I'm having, and I've earned the ability to act as I wish to induce the further healing a satisfied, buddhistic and self indulgent Mark could experience. It's tempting to agree with that. I'd like to but....
Having been without my normal self for what seems like a lifetime, I want some of that back--I want to read my Denise Duhamel poetry books that I bought--when? a year ago, no, more--and then write her yet another fan email (seriously, "Mille et Cent Sentiments" just destroyed me). I want to want to write a grammatically perfect French sentence effortlessly and actually choose the correct verb case and form for each verb without picking up an ungainly Baedecker for the Foreign Language Challenged.
At my back, I now always hear Time's winged chariot scurrying near. And as quickly as my strict machine can accelerate my clown car on rails, it can brake again. I no longer have the luxury to think that I'm exempt from my own expectations. Mark is back in charge, and he still wants to conjugate "etre" and "avoir" from crystalline memory.
Then, there is this--a moment where I talk, and where I connect, and where I still get to communicate, express myself as normal and appreciate where I've been and where I'm going. I keep telling myself that I should wrap this blog project up, but then I think of how much I would miss it, and how much I've yet to tell you. I feel like I can't get inside cancer and make you truly understand how transforming it is, both good and bad. It's as if I were a Leatherback turtle and I was attempting to explain what it is to emerge from a sand nest in the dark and dart toward an ocean where--if I make it there--the odds are firmly stacked against me.
The turtle is too focused on just the facts ahead--yards of beach, swimming out against the tide, avoiding an ocean full of wild life that eats without discrimination. I am too focused on losing functions and not upon the wild life that has been eating at me without discrimination. These days I think of the two little points, centimeter here, bit more than a centimeter there, that sound so small, and yet sit large on my outlook--how many milliions of robot killer cells await in that gashes left in me? how long before it's their time to triumph again?
This is not over, of course it's not. This blog, me, the cancer--we're a trio seeking a wizard, one of us needing a heart, one of us needing a brain, one of us needing to learn to love and forgive. Myself, most of all, for failing at life, for not being able to live without cancer. That there was a hidden beam in me, rotten at its core, that collapsed one day and left me roofless and exposed. That my strict machine is sputtering upon restart, not understanding that I'm a bit hysterical that it work perfectly upon command, that our old life be better implanted in this imperfect body.
Ah, that old life! To be truthful, I'm not certain it ever existed. I think I always simply longed. For efficiency, an effortless mastery that came of the well regulated self. Not the dreamer, who told Denise that her poem changed him, or the devil who hated himself for no real reason whatsoever, merely that he was not red enough, angry enough, snappish enough.
Yes, come to think of it, this music and that Ensure are sounding better and better...
Given that it's early, sort of, I'm goofing on Facebook and reading the New York Times online and avoiding doing anything of real value to the world. My headphones are on, Pandora is playing my Roisin Murphy channel, and I'm truly gearing up to clean up my bedroom, and later to plant some butterfly weed, and perhaps mow...but first, I'm going to have a can of TwoCal. And of course some more tunes. And an Ensure...and some more paper.
Yes, deadly procrastination. As I come back more to life, I recognize that I need to hold myself to the regimentation expected of a more typical modus operandi. That to claim goals, to hold them out as evidence of my worthiness to participate, I actually have to try to accomplish them, and accomplishing them takes discipline and a higher order of regimentation. It's wonderful to splash in the kiddie pool at age 53, I freely admit. As much as it frustrates me, I also find delight in never checking the clock during the day (I typically only make certain I haven't missed making coffee around 5 and to check how long it will be until Wheel of Fortune is on--seriously, it's that bad).
Often enough, my form of regimentation is a response to the animal urges of my body--nap at 10AM? Sure! Extra Ensure at 4pm? No problem, precious. So I envision not so much a fascist dictatorship of time management but the ability and the desire to say "NO" to some of my whims--that nap is ruining the flow of reading a book, studying French or Danish, working in the yard, cleaning the house, finding a job.
And those are all things on my list of to-dos that aren't getting done with the artful grace I envisioned of them in the past few months. I'm not practicing putting sentences together in Danish, I am ignoring my special French emails, and I seem to have hit a patch in "The Bully Pulpit" by Doris Kearns Goodwin that is inexpressibly boring. I need, I know, a strict machine to push my roller coaster car towards the next valley in preparation for the next hill.
There's a great argument to be made that I've only recently and incompletely emerged into Survival Mode, that for a period of time that feels like a decade, I've been told I'm dying. I've earned the goof time I'm having, and I've earned the ability to act as I wish to induce the further healing a satisfied, buddhistic and self indulgent Mark could experience. It's tempting to agree with that. I'd like to but....
Having been without my normal self for what seems like a lifetime, I want some of that back--I want to read my Denise Duhamel poetry books that I bought--when? a year ago, no, more--and then write her yet another fan email (seriously, "Mille et Cent Sentiments" just destroyed me). I want to want to write a grammatically perfect French sentence effortlessly and actually choose the correct verb case and form for each verb without picking up an ungainly Baedecker for the Foreign Language Challenged.
At my back, I now always hear Time's winged chariot scurrying near. And as quickly as my strict machine can accelerate my clown car on rails, it can brake again. I no longer have the luxury to think that I'm exempt from my own expectations. Mark is back in charge, and he still wants to conjugate "etre" and "avoir" from crystalline memory.
Then, there is this--a moment where I talk, and where I connect, and where I still get to communicate, express myself as normal and appreciate where I've been and where I'm going. I keep telling myself that I should wrap this blog project up, but then I think of how much I would miss it, and how much I've yet to tell you. I feel like I can't get inside cancer and make you truly understand how transforming it is, both good and bad. It's as if I were a Leatherback turtle and I was attempting to explain what it is to emerge from a sand nest in the dark and dart toward an ocean where--if I make it there--the odds are firmly stacked against me.
The turtle is too focused on just the facts ahead--yards of beach, swimming out against the tide, avoiding an ocean full of wild life that eats without discrimination. I am too focused on losing functions and not upon the wild life that has been eating at me without discrimination. These days I think of the two little points, centimeter here, bit more than a centimeter there, that sound so small, and yet sit large on my outlook--how many milliions of robot killer cells await in that gashes left in me? how long before it's their time to triumph again?
This is not over, of course it's not. This blog, me, the cancer--we're a trio seeking a wizard, one of us needing a heart, one of us needing a brain, one of us needing to learn to love and forgive. Myself, most of all, for failing at life, for not being able to live without cancer. That there was a hidden beam in me, rotten at its core, that collapsed one day and left me roofless and exposed. That my strict machine is sputtering upon restart, not understanding that I'm a bit hysterical that it work perfectly upon command, that our old life be better implanted in this imperfect body.
Ah, that old life! To be truthful, I'm not certain it ever existed. I think I always simply longed. For efficiency, an effortless mastery that came of the well regulated self. Not the dreamer, who told Denise that her poem changed him, or the devil who hated himself for no real reason whatsoever, merely that he was not red enough, angry enough, snappish enough.
Yes, come to think of it, this music and that Ensure are sounding better and better...
Saturday, May 17, 2014
It isn't pain, it's change
For the past two nights, I've been unable to sleep, so I sleep during the day when fatigue sets in, back on my upside down schedule. I'm considering trying to stay awake today all day, in hopes that fatigue matches, say, an 11pm bedtime. I'd like to push reset to normal.
I am, I think, just the victim of the Spring phlegm slide, which is gross, and trust me I wouldn't mention it if it wasn't real and germane to the topic. I don't process this like you normals, of course, so its presence in my life is noisome and occasionally scary. I hate feeling like I'm choking and realizing that--if I am--I have very few options to prevent it. Sudafed has been clearning my nose, but they've not yet made the pill that clears a clogged up throat.
I did though realize an important fact in the midst of this blockage and drainage crisis--it's been at least two weeks since I took any pain medicine. The morphine elixir and the lortab elixir are milling about the cupboard, bored. I've forgotten to change my fentanyl patch because I may not need it so much anymore.
I want to celebrate this, but such a celebration could be short lived. My chin is now further south than it's been before, my lower lip has an accordion fold that's new--my skin feels tighter over the upper teeth I have left--how long until that rubs the wrong way and drives me batshit crazy? Honestly, I don't know--am I projecting a pain that may not come? Possibly. Do I really believe that possibility? no.
I've found that in a typical doctor's visit, you will hear X number of possibly good outcomes and X number of possibly bad ones. The variable is contained within your situation. Up to this point, my condition was pretty bad so my X was a fairly high number, say 4 or 5 each. You will notice, if you ascend to this exalted layer of the healthcare system, that the good things the doctor predicts rarely come true; they are too subject to further variations upon their delicate positive status. Note, though, that the bad ones nearly always come true, in a fair flush of health and agency, and it's always as bad as predicted.
Perhaps negativity does sell more stories, and the dramatics of medicine simply emphasize a winning hand. Or decline is simply easier to chart than upswing--more definite and certain of foot. Or cancer is just the buzzkill I've called it all along, subject to the negative far more than the positive--or a combination of all these possible factors.
Simply be prepared: forewarned, forearmed.
But, dropping out of one medicine pool is not a bad thing whatsoever--particularly when that pool includes opiates, and may dull one with the certainty that they help one too. I am a swimmer in the pool of toxicity--it's not like I need to add to my lack of buoyancy in the water.
At my last visit with Dr. Dayton, he hinted at the possibility that I'll be given a chemo holidy in the indeterminate future. That would be another pin knocked over in the "return my blood supply to actual blood instead of half pharmaceuticals. No doubt Anthem would enjoy a few weeks without a weekly bill of $6800., We could all use a breather, and not least my veins which are a bit weary of the weekly sticks.
So it's not pain, it's change. I'm growing up as a cancer patient. I'll cusping on my first "remission" (I'll never really be cancer free they tell me; but cancerless enough for a break), I've beaten expectations, I'm loosening myself from painkillers with no doctor pressuring me to do so. I may be nearly Junior year at Cancer U, after all.
Admittedly I'm still fixated on mortality. i'm still polling my friends to find out what defines a "good" person. I am not sitting by the door waiting for the bell, I'm defining space and tasks my own way, with no outer reference. I'm not even cooking much for Charles who has his own plans for his diet. But I am not wondering how tomorrow arrives, and I'm meeting it less often with my bedroom light on. Another reason that a good night's sleep is just the change I need.
Subscribe to:
Posts (Atom)