Last night, post Wheel of Fortune, my guilty pleasure. Rain here, tornados elsewhere, and everywhere I've spaded is refilling with crab grass. It is like I was never there, and here, like I wasn't either, occasionally.
Maybe you've had, too, in such moments a sudden vision of yourself: I was thin, and half-gone--the edges degenerating into lamplight behind me. I looked like those old relatives of mine in the Sixties who were dying as I was coming into hyperdrive.
I saw that a whole part of my life, a part the size of Manhattan, had broken off and floated away like an edge of Greenland. That I would have to redraw the map of me, because it was no longer accurate to say I was shaped this way or that. I saw, in my vision, that a type of life I had was gone, had been gone, and I had done everything to resist seeing that truth. That helter skelter fun/mad dash after love and romance, that definition of everything by erection and reaction, the counting of flower petals down to an answer, phone calls, this life was over.
I had been conditioned by my parents to believe that being uncoupled was akin to death, that being uncoupled unless for life was vulgar, and later, once we had all established that I was gay, that I would be alone, they knew it, and they worried for me. Of course I told myself their retro-homophobia was to blame for that, and it was. It was not possible for homosexuals to commit or be together in any meaningful way, and the only way they could be expected to connect was through sex. This was to their minds a life sentence of weary, trudging effort, and it was going to be mine.
Up until last night, they were wrong. I have had a life of strong attachments and persistent affection, wonderful couplings that changed me, those that almost destroyed me, some that continue in different forms until now. But that disappearing man, in that halo of a floor lamp, what he knew was that there would be no more knocks upon the door, and no changes, no additions, finally, to the roster of my life.
I don't find it sexy that my lower jaw is mostly gone, that a tube hangs out of the middle of my torso, and a tube sticks out of the bottom of my throat, that my mouth hangs open, and I stuff it with tissue to absorb any drool. I don't find sex a sexy thought--it's either "meh" or "so what" or easily accomplished, if you get my drift. I cannot kiss anymore, I have no tongue for those kind of kisses, and I'm bumpy and bony to hug. I am neither waiting nor expecting, in this little house of me, for anyone charming or not.
I've known this for some time, of course--I didn't just discover this post Vanna White last night. I have not though seen it, been forced to look at it and acknowledge just what it means. My recent troubles that I wrote about were signs of its last hurrah, the last person for whom I think I will have felt those feelings for--and seeing that it can't be again is a spur to reality. The vision was fueled by the rush of the world I feel leaving me behind, the talk amongst those to whom I can't speak, the dinner invitations that I cannot accept, the work that binds people to a clock that's relatively meaningless to me unless a doctor, a CT scan, a blood draw, a vial of chemicals, wants me at a particular time and place.
I've spent a lot of my life looking for love and I found it in abundance, in different shapes and sizes and places. Valid, all of it, it too disdained the narrow view my parents had of me and those of my tribe. It created interested scenes and apartments and took place in cities--Dallas, Dayton, Indianapolis, Washington D.C., Los Angeles, San Francisco, New York City.
I will remember the plumber from Poland who whispered a poem in my ear in Boerum Heights, Brooklyn--a short dalliance, fueled more by sex than love, but a mutual fascination that brought us together a few times, and not just for naked poems in my bedroom with the fireplace. The wonder with which I met Ben for a blind date in Chelsea, set up because we were both from Indiana. The fast in/out love story of Robert at IU in the 80's, about the time I was listening to Kate Bush's "Running Up That Hill" on obsessive Walkman rewind/replay.
I will love of course; I have a large family that could absorb any of it I wished to spill. There are dogs that may come that will need all I can give. I have people, a couple in my life, who will be there willing to be loved by even one like me. But it has been eye opening to know I won't thrill to meet, and think obsessively, and hope to hear the phone, and jump at a sound at the door, worry my hair into a better shape, curse my cowlick, hate the way I look without reason to do so--all for the dance, the night, the whirling of early insects, the rain of Spring, the tornado in the tow and service of love the romancer, the eye of it above this little house of me.
Tuesday, April 29, 2014
Friday, April 18, 2014
Good infusion Friday
I am now a known entity at infusion on Fridays. I spend about 1 and 1/2 hours each week here which isn't terrible. My blood is drawn and tested, to see if my chemistry is holding up. I'm the Petri dish in the corner usually, and more often than not this is where I read those articles in the NY Times that I didn't finish with coffee at home.
I like infusion because the nurses run this joint with friendly efficiency. This is the place where I t to normally communicate with the doctor, nurses being better translators of my needs than I am with an ipad. The stepped system works well with my tendency to forget what I meant to ask for the previous week, and it frees my every six week check in with Dr. Dayton from being a round of basic, if expensive, clerical chemistry.
As this is Good Friday, Charles didn't tag along. I'm Charlie McCarthy today without Edgar Bergen. There's no one around to joke with about the odd Muzak that is played in the building. Right now a reworked Michael Jackson tune is sawing out the beat. The room is almost empty; early infusion is often quiet like this. Under normal circumstances I'm pretty alert but this morning I slept past my normal pop up time in the 5am range. I could use a bit more coffee and while it's available here, it's not freshly ground and not a bit exotic. I may have cancer but I can still occasionally be a snob; folger's? No thanks--estate Guatemalan is what's rockin' at home this week.
Infusion for me is mostly not chemo in the usual sense--I get two drugs, preceded by a small bag of liquid Benadryl. This is all fed through an IV for me--I don't have and don't really want a permanent port; I maintain hopes that I can improve to the point where weekly yields to bi-weekly to irregular before it hits never. Erbitux, the main ingredient for me, is an epidermal growth factor inhibitor. It's famous for causing skin rashes--and in my case, itchy back and underarms. It has been a miracle for me, something that seems to keep a progress moving and prevents a systemic collapse into wild growth. It is supplemented at the end of an hour's drip by a small tube of methotrexate, with the unfortunate color of urine from a victim of dehydration or overworked kidneys. That's no complaint-- from the moment of its introduction into my process, I've made strides that are quicker and surer.
This is how Friday has started for me lately, Good or not, it is reliably good. As I sit here and look out upon a room of taupe recliners, questionable Muzak, bad lighting, I feel pretty much at home, my version of Cheers, where everybody does know my name. For today my insurance company will be billed around $6,300.00. Do you have any idea how much I feel gratitude for having that policy? I grouse about the monthly cost of my COBRA from work, but a year's worth of monthly premiums is still a bit less than the cost of one and one half of these sessions. I know there's a fashion for hating the ACA but those demonizers obviously aren't reading the types of benefit explanations that I get regularly in the mail. Without insurance, society would hardly be willing to bear this cost for me and we both know it. Yet another good this Friday.
I'd love to nap right now but the erbitux is nearly gone, the methotrexate will only take a couple of minutes, and I'll be sent upon my way for another week. Pushed out today in temperatures near 70, with all the flowering trees taking a toll on my system, allergy season in full swing. It's Spring and the spring in my step will be my way of saying thanks, so long and thanks for all the drugs! And I will, under the blue sky that pierces bad attitudes, truly mean it.
I like infusion because the nurses run this joint with friendly efficiency. This is the place where I t to normally communicate with the doctor, nurses being better translators of my needs than I am with an ipad. The stepped system works well with my tendency to forget what I meant to ask for the previous week, and it frees my every six week check in with Dr. Dayton from being a round of basic, if expensive, clerical chemistry.
As this is Good Friday, Charles didn't tag along. I'm Charlie McCarthy today without Edgar Bergen. There's no one around to joke with about the odd Muzak that is played in the building. Right now a reworked Michael Jackson tune is sawing out the beat. The room is almost empty; early infusion is often quiet like this. Under normal circumstances I'm pretty alert but this morning I slept past my normal pop up time in the 5am range. I could use a bit more coffee and while it's available here, it's not freshly ground and not a bit exotic. I may have cancer but I can still occasionally be a snob; folger's? No thanks--estate Guatemalan is what's rockin' at home this week.
Infusion for me is mostly not chemo in the usual sense--I get two drugs, preceded by a small bag of liquid Benadryl. This is all fed through an IV for me--I don't have and don't really want a permanent port; I maintain hopes that I can improve to the point where weekly yields to bi-weekly to irregular before it hits never. Erbitux, the main ingredient for me, is an epidermal growth factor inhibitor. It's famous for causing skin rashes--and in my case, itchy back and underarms. It has been a miracle for me, something that seems to keep a progress moving and prevents a systemic collapse into wild growth. It is supplemented at the end of an hour's drip by a small tube of methotrexate, with the unfortunate color of urine from a victim of dehydration or overworked kidneys. That's no complaint-- from the moment of its introduction into my process, I've made strides that are quicker and surer.
This is how Friday has started for me lately, Good or not, it is reliably good. As I sit here and look out upon a room of taupe recliners, questionable Muzak, bad lighting, I feel pretty much at home, my version of Cheers, where everybody does know my name. For today my insurance company will be billed around $6,300.00. Do you have any idea how much I feel gratitude for having that policy? I grouse about the monthly cost of my COBRA from work, but a year's worth of monthly premiums is still a bit less than the cost of one and one half of these sessions. I know there's a fashion for hating the ACA but those demonizers obviously aren't reading the types of benefit explanations that I get regularly in the mail. Without insurance, society would hardly be willing to bear this cost for me and we both know it. Yet another good this Friday.
I'd love to nap right now but the erbitux is nearly gone, the methotrexate will only take a couple of minutes, and I'll be sent upon my way for another week. Pushed out today in temperatures near 70, with all the flowering trees taking a toll on my system, allergy season in full swing. It's Spring and the spring in my step will be my way of saying thanks, so long and thanks for all the drugs! And I will, under the blue sky that pierces bad attitudes, truly mean it.
Tuesday, April 15, 2014
A Sleeplessness
At 4:30am, I'm having Swiss Miss Dark Hot chocolate mix in a mixing cup that I pour into my feeding tube. I taste most of what I eat, I know this stuff is good, it feels wonderfully hot in my stomach. This is my final attempt to sleep for the night before I'd normally get up anyway. Well, getting up won't happen, but you know what I mean.
This just happens sometimes, to all of us. Yesterday I took a nap in the afternoon--maybe that was enough sleep for a bit, and I didn't need my full night, or rather I couldn't get it. There are times when the mind has too much work to do, whether you like or know it, to take six or seven hours off. Recently I read an article in the NYT about the importance of a certain amount of sleep for the brain to undergo a type of regular cleaning and maintenance, a sort of hormonal janitorial service. Now every time I fail to check in for cleaning, I figure I'm one step closer to janky brain.
Last night, this morning, the world was wet and cold in Indiana--late season snow was forecast, but didn't develop here. Just late season winter wet, early season cold spring--and this just after trees had blossomed, after I looked at the buds forming on the dogwood in the backyard. Luckily they are tough enough to take a bad night, rather like me.
I wrote of a night in San Francisco like this, one where I looked out into 3am fog, seeing only a smear of light from certain places on the overbuilt hill around me. In Bloomington, I looked outside to check for snow and saw long tracers of porch light and incidental street lighting on the asphalt, and from the kitchen, the light blue glow behind the clouds of what was supposedly a spectacular looking moon.
There's a part of me willing to blame feelings of anxiety, my keyed up energy, concern, or just plain lack of sleep on a full moon. Not even a small insignficant part--we're all part of the natural world, pegs in the order of things, so why shouldn't intensified gravity from the moon effect me--or affect me? I can well imagine this place a few hundred years ago, with the only light being the diffused glow of a covered moon, that light playing down on wet ferns under ash and beech and oak trees, bands of them, where my yard is now.
There was a time in my life where I virtually never failed at sleep. I could stay up until the wee hours, then boom! asleep. Wake at seven and go. For years, I went to bed at 10 so I could get up at 5, and be ready for when the gym opened. I still miss doing push ups and sit ups at 7am in the SRSC on campus, I miss that schedule, I miss that bagel I occasionally had afterwards.
Life has seasons, more and more varied than a typical year. I am late season cancer and early season cancer "survivor"--parentheses because I now know I'll never be rid of it, so what it is I'm surviving is the idea that it defeats me easily. That too is a cold, and occasionally wet transition, where the frost water of reality seems regularly to be thrown in my face. Try sleeping through that.
You or I could make the case that I'm always fighting a bit of fear when it comes to sleep. I worry about the fact that phelgm can stick in my throat and feel very choking, I worry that I won't breathe with diligence, I worry that I won't wake up. Some nights, I do something I have never done, not even as a child--I sleep with my lamp on. I do this because I reason that leaving the lamp on is my way of ensuring I'll get up because I have to turn it off. Of course that's bad logic, but you must let me have the fantasy I need to get this brain cleaned.
I do worry about myself, I worry about what's next, but usually that doesn't keep me up. I accept worry, concern, fuss, as part of a normal existence; I always have. My entire family would be hard pressed to name a single unfetteredly happy moment that we've had without secretly wondering when the other shoe would drop. That, I believe, is simply our Hoosier upbringing, a North East Indiana fatalism that is tied toward living close to the land, the destruction of crops willy-nilly in bad weather, the lack of wealth from harvests, the eternal grind of seasons into one another, with their bumpy often unpredictable transitions.
Me, this transition sometimes drives me crazy. It keeps me up. I cannot lie down for sleep in just any position anymore. I use more pillows, I take more time. My night is full of routines, for changing bandages on my neck, for cleaning the valve on my trach, for crushing the pill and feeding the lortab down the tube, waiting for it to relieve. I often have to do the old man middle of the night pee--not too hard to believe considering everything I eat is liquid, huh? I stumble out in my turkish towel bathrobe, trying very hard to keep the belt out of the toilet in my half-dazed state.
But some of it is so achingly beautiful you can't truly be told of it. You'd have to be here, and I never want you to be. I can say that moonlight was tempting me onto the porch, that yellow smear in the street was a brush stroke, the dark, and the light blue were colors I love to see together. The night has a way of creeping into the house and the house talks to me, the floorboards creak a bit, the limestone step sounds as if someone has stepped upon it. Even as I become tired I know that everything is alright because it is simply too interesting to ever leave.
This just happens sometimes, to all of us. Yesterday I took a nap in the afternoon--maybe that was enough sleep for a bit, and I didn't need my full night, or rather I couldn't get it. There are times when the mind has too much work to do, whether you like or know it, to take six or seven hours off. Recently I read an article in the NYT about the importance of a certain amount of sleep for the brain to undergo a type of regular cleaning and maintenance, a sort of hormonal janitorial service. Now every time I fail to check in for cleaning, I figure I'm one step closer to janky brain.
Last night, this morning, the world was wet and cold in Indiana--late season snow was forecast, but didn't develop here. Just late season winter wet, early season cold spring--and this just after trees had blossomed, after I looked at the buds forming on the dogwood in the backyard. Luckily they are tough enough to take a bad night, rather like me.
I wrote of a night in San Francisco like this, one where I looked out into 3am fog, seeing only a smear of light from certain places on the overbuilt hill around me. In Bloomington, I looked outside to check for snow and saw long tracers of porch light and incidental street lighting on the asphalt, and from the kitchen, the light blue glow behind the clouds of what was supposedly a spectacular looking moon.
There's a part of me willing to blame feelings of anxiety, my keyed up energy, concern, or just plain lack of sleep on a full moon. Not even a small insignficant part--we're all part of the natural world, pegs in the order of things, so why shouldn't intensified gravity from the moon effect me--or affect me? I can well imagine this place a few hundred years ago, with the only light being the diffused glow of a covered moon, that light playing down on wet ferns under ash and beech and oak trees, bands of them, where my yard is now.
There was a time in my life where I virtually never failed at sleep. I could stay up until the wee hours, then boom! asleep. Wake at seven and go. For years, I went to bed at 10 so I could get up at 5, and be ready for when the gym opened. I still miss doing push ups and sit ups at 7am in the SRSC on campus, I miss that schedule, I miss that bagel I occasionally had afterwards.
Life has seasons, more and more varied than a typical year. I am late season cancer and early season cancer "survivor"--parentheses because I now know I'll never be rid of it, so what it is I'm surviving is the idea that it defeats me easily. That too is a cold, and occasionally wet transition, where the frost water of reality seems regularly to be thrown in my face. Try sleeping through that.
You or I could make the case that I'm always fighting a bit of fear when it comes to sleep. I worry about the fact that phelgm can stick in my throat and feel very choking, I worry that I won't breathe with diligence, I worry that I won't wake up. Some nights, I do something I have never done, not even as a child--I sleep with my lamp on. I do this because I reason that leaving the lamp on is my way of ensuring I'll get up because I have to turn it off. Of course that's bad logic, but you must let me have the fantasy I need to get this brain cleaned.
I do worry about myself, I worry about what's next, but usually that doesn't keep me up. I accept worry, concern, fuss, as part of a normal existence; I always have. My entire family would be hard pressed to name a single unfetteredly happy moment that we've had without secretly wondering when the other shoe would drop. That, I believe, is simply our Hoosier upbringing, a North East Indiana fatalism that is tied toward living close to the land, the destruction of crops willy-nilly in bad weather, the lack of wealth from harvests, the eternal grind of seasons into one another, with their bumpy often unpredictable transitions.
Me, this transition sometimes drives me crazy. It keeps me up. I cannot lie down for sleep in just any position anymore. I use more pillows, I take more time. My night is full of routines, for changing bandages on my neck, for cleaning the valve on my trach, for crushing the pill and feeding the lortab down the tube, waiting for it to relieve. I often have to do the old man middle of the night pee--not too hard to believe considering everything I eat is liquid, huh? I stumble out in my turkish towel bathrobe, trying very hard to keep the belt out of the toilet in my half-dazed state.
But some of it is so achingly beautiful you can't truly be told of it. You'd have to be here, and I never want you to be. I can say that moonlight was tempting me onto the porch, that yellow smear in the street was a brush stroke, the dark, and the light blue were colors I love to see together. The night has a way of creeping into the house and the house talks to me, the floorboards creak a bit, the limestone step sounds as if someone has stepped upon it. Even as I become tired I know that everything is alright because it is simply too interesting to ever leave.
Friday, April 11, 2014
A Post Without Materialism
If there's a problem with disaability and the Web, it's at the intersection of me and fashion.
No longer truly able to satisfy my retail therapeutic needs by browsing for hours, I've turned to the Web as a logical plug for my leaky neediness. Despite what optimistic user experience experts may say, and regardless of the opinions of interface experts, online shopping is to my mind an empty experience. See, click, get. Price checking can be frustrating, just as much as it is in real time, and the heuristics are nude of gratification; sure, tell me the shoes are leather but we both know there's gradations of tanned cowhide, feelable, and visceral--even in those awful lights--that is not available upon pressing enter.
In my medically disabled life, I have no real need of fashion. I could drop the pretense and go sweatpants and really no one would bat an eye or say anyting to me about it. There are functional issues to address here and talking about the Ensure stains on my grey cotton pull ons doesn't rank as one of them. The blessing of low expectation is how utterly unnecessary it is to lift the feet in order to cross the bar.
I've tried to operate in opposition to that lowness, though, with the thought that any commitment I could make to not looking like a victim would contribute to not being treated as one. Whether that has succeeded or not, I know that I feel better in a polo shirt and unstained jeans and I look more myself--or as I think of myself.
Therefore, I make a habit of cruising Hautelook and Gilt.com on a very regular basis. I receive Gap and Old Navy emails because I have succumbed to their online sales. I'm known at Macys.com and surely marked as a shoe drooler. There is a mythical country called express.com and I've been there.
Need so often has very little to do with this--though earlier in the year I had a spate of ordering pants that would actually fit me. Particularly with shoes, need is truly not part of the game. DSW is not the site I must go to for my drugs, it is my drug of choice.
Today as I'm preparing to go to a lecture on Nehru, and his governance of India in the 40's and 50's, I'm fighting to not buy a 44.97$ pair of penny loafers with a lug sole on Hautelook. That price! That practical sole! I cannot expect to do better, I will not live forever, why not?
I've been espousing the whole carpe diem thing to Charles lately, particularly in regards to traveling, to his reactions to his own weight which he thinks is too high. I am not a good person to talk to about subjects like this--I can wordlessly point to my mouth and make the point adequately that I would literally die with happiness to be overweight at this point; I can arch my regrown eyebrows over a quibble of how much a hotel room in Manhattan will cost versus one much further from the action in Park Slope Brooklyn (answer: no).
Taken to its logical extreme, it would seem I'm advocating for ordering those penny loafers and getting that hotel room and damn the torpedoes. I'm really not, though; my advocacy is still laced with the fact that the diem being seized will be the bill to be paid tomorrow. Whatever fantasy or haze I operate in I'm still aware that I live now on a fixed income, none too big, and Charles makes a salary which being paid by Indiana University renders at the low end of like professional opportunities nationwide. This is Indiana, we don't pay for squat!
Still, seizure is the rule one wishes to engage. The loafer, the oxford, the sneakers--materialism as marker; I'm still here and I'm still trying to be relevant. I'm still trying to look good; I don't intend to leave. The hotel room to frame the experience as worthy, one's time as important, the idea of placing oneself in space that others recognize and covet--even if only for a few days--is often enough worth one hundred dollars more per night.
I am recently on an upward trajectory. Aside from the emancipation of surgery 2, the cancer doctor is happy with how I'm doing, I'm gaining weight, my hair was cut, I'm itchy to do. There is less need for me to bend forward as I'm reclining on the bed to grab at a vision of 300$ Timberlands: I have way less to prove now.
In fact, I have almost nothing that requires proving. The results of tests I run on myself almost daily are all coming up better; acuity, stability and desire seem strong. The equilibrium I'm poised to maintain isn't remission but continuance, and the ability to fight implied not in shoes or pullovers, but in the control of the self down to the cellular level.
_____________________________________________________________________________
You might wonder--did I make it to the lecture? Indeed I did, and yes, it was well worth it.
Sir Christopher Bayly spoke of the Nehru era in India as an almost mystical topic--this was a fascinating investigation of politcal philosophy through ideological biography applied to some of the closest advisors and participants in the era's government. To ask if India was Socialist or if India was Communitarian reveals less in answering than it does of the person asking--the inevitably bi-polar worldview of Western society during the Cold War is of difficult application to South Asia at this time (and it still is).
I tend to think in too singular a fashion about history, and I deflect too much of the type of emotional/social reactions which occurred within former colonies which struggled for or were thrust into independence in the post World War II Era. I don't apply the lessons which can be simply learned by a glancing familiarity with the biography of Tagore, for example, to see how Western socio-political theories played out across India, its thought leaders in the early Twentieth Century, and those who led it post 1947, and vastly more important, post-Partition.
Was Nehru a Democrat, a Socialist, a Communitarian or a Liberal? The answer is yes.
Not least of the day, I got to see some old friends, noted many of the people who I used to see at India Studies talks are still at India Studies talks. I like that sort of continuity right now, I needed very much to see it. I've needed to know that life has been going on, and going well, without it. That revolving a different sun, my old life's locus is still there, healthy, and waiting for it should I be able to jump back in.
I hope to do just that. The Dhar India Studies weekly lecture series will start up again in the Autumn. Free, fantastically interesting, open to the public, open even to people like me.
No longer truly able to satisfy my retail therapeutic needs by browsing for hours, I've turned to the Web as a logical plug for my leaky neediness. Despite what optimistic user experience experts may say, and regardless of the opinions of interface experts, online shopping is to my mind an empty experience. See, click, get. Price checking can be frustrating, just as much as it is in real time, and the heuristics are nude of gratification; sure, tell me the shoes are leather but we both know there's gradations of tanned cowhide, feelable, and visceral--even in those awful lights--that is not available upon pressing enter.
In my medically disabled life, I have no real need of fashion. I could drop the pretense and go sweatpants and really no one would bat an eye or say anyting to me about it. There are functional issues to address here and talking about the Ensure stains on my grey cotton pull ons doesn't rank as one of them. The blessing of low expectation is how utterly unnecessary it is to lift the feet in order to cross the bar.
I've tried to operate in opposition to that lowness, though, with the thought that any commitment I could make to not looking like a victim would contribute to not being treated as one. Whether that has succeeded or not, I know that I feel better in a polo shirt and unstained jeans and I look more myself--or as I think of myself.
Therefore, I make a habit of cruising Hautelook and Gilt.com on a very regular basis. I receive Gap and Old Navy emails because I have succumbed to their online sales. I'm known at Macys.com and surely marked as a shoe drooler. There is a mythical country called express.com and I've been there.
Need so often has very little to do with this--though earlier in the year I had a spate of ordering pants that would actually fit me. Particularly with shoes, need is truly not part of the game. DSW is not the site I must go to for my drugs, it is my drug of choice.
Today as I'm preparing to go to a lecture on Nehru, and his governance of India in the 40's and 50's, I'm fighting to not buy a 44.97$ pair of penny loafers with a lug sole on Hautelook. That price! That practical sole! I cannot expect to do better, I will not live forever, why not?
I've been espousing the whole carpe diem thing to Charles lately, particularly in regards to traveling, to his reactions to his own weight which he thinks is too high. I am not a good person to talk to about subjects like this--I can wordlessly point to my mouth and make the point adequately that I would literally die with happiness to be overweight at this point; I can arch my regrown eyebrows over a quibble of how much a hotel room in Manhattan will cost versus one much further from the action in Park Slope Brooklyn (answer: no).
Taken to its logical extreme, it would seem I'm advocating for ordering those penny loafers and getting that hotel room and damn the torpedoes. I'm really not, though; my advocacy is still laced with the fact that the diem being seized will be the bill to be paid tomorrow. Whatever fantasy or haze I operate in I'm still aware that I live now on a fixed income, none too big, and Charles makes a salary which being paid by Indiana University renders at the low end of like professional opportunities nationwide. This is Indiana, we don't pay for squat!
Still, seizure is the rule one wishes to engage. The loafer, the oxford, the sneakers--materialism as marker; I'm still here and I'm still trying to be relevant. I'm still trying to look good; I don't intend to leave. The hotel room to frame the experience as worthy, one's time as important, the idea of placing oneself in space that others recognize and covet--even if only for a few days--is often enough worth one hundred dollars more per night.
I am recently on an upward trajectory. Aside from the emancipation of surgery 2, the cancer doctor is happy with how I'm doing, I'm gaining weight, my hair was cut, I'm itchy to do. There is less need for me to bend forward as I'm reclining on the bed to grab at a vision of 300$ Timberlands: I have way less to prove now.
In fact, I have almost nothing that requires proving. The results of tests I run on myself almost daily are all coming up better; acuity, stability and desire seem strong. The equilibrium I'm poised to maintain isn't remission but continuance, and the ability to fight implied not in shoes or pullovers, but in the control of the self down to the cellular level.
_____________________________________________________________________________
You might wonder--did I make it to the lecture? Indeed I did, and yes, it was well worth it.
Sir Christopher Bayly spoke of the Nehru era in India as an almost mystical topic--this was a fascinating investigation of politcal philosophy through ideological biography applied to some of the closest advisors and participants in the era's government. To ask if India was Socialist or if India was Communitarian reveals less in answering than it does of the person asking--the inevitably bi-polar worldview of Western society during the Cold War is of difficult application to South Asia at this time (and it still is).
I tend to think in too singular a fashion about history, and I deflect too much of the type of emotional/social reactions which occurred within former colonies which struggled for or were thrust into independence in the post World War II Era. I don't apply the lessons which can be simply learned by a glancing familiarity with the biography of Tagore, for example, to see how Western socio-political theories played out across India, its thought leaders in the early Twentieth Century, and those who led it post 1947, and vastly more important, post-Partition.
Was Nehru a Democrat, a Socialist, a Communitarian or a Liberal? The answer is yes.
Not least of the day, I got to see some old friends, noted many of the people who I used to see at India Studies talks are still at India Studies talks. I like that sort of continuity right now, I needed very much to see it. I've needed to know that life has been going on, and going well, without it. That revolving a different sun, my old life's locus is still there, healthy, and waiting for it should I be able to jump back in.
I hope to do just that. The Dhar India Studies weekly lecture series will start up again in the Autumn. Free, fantastically interesting, open to the public, open even to people like me.
Wednesday, April 9, 2014
The Emancipation of Surgery 2
Yesterday, a bit dullish and grey going from Bloomington to Indianapolis. Eventually Charles turned on the radio to WZPL which is a station of chatter--morning drive time personalities interrupted by "hits." We were on our way to IU Health Hospital to see the surgeon who had done Surgery 1, and I was daydreaming of Surgery 2.
Surgery 2 is a complicated manuever to cover up failed tissue in my neck--a hole that radiation burned into me, a window into my neck, a grate I cover twice or three times a day with fresh gauze and tape, my own sewage pipe. It's the reason I can't blow my nose, it's the stiff that keeps my neck from its old giraffe-ish tendencies, it's a complete pain in my tuckass, it's the leftovers of treating cancer by killing its victim.
To cover this large hole, Surgery 2 would pull my pec muscle up from the right side and a skin graft would normalize the outside--but there is an artery over there, the carotid, there are risks to this sort of surgery (somewhat big) and there is blood supply to the altered body geography to consider.
The surgeon? Happy enough with my progress after surgery 1; happy enough with my gardening, and general sassiness, my grey wingtips and my polo shirt; happy enough with the decline of pain in my mouth. But not ready to schedule Surgery 2, and not certain it's time to take this risk, and not inclined to work on my "get this shit done" schedule.
And that is me--get this done. Let me heal, let me get back to a normal, let me blow my nose--but I only know what I know. I don't know squat of risk and function--I only know me. I can't look at myself top down, I only see slant upwards. I only know that I want it done, not what doing it costs. So I have to defer to the surgeon, and there's more waiting, at least until we reconvene this session in August.
So I have a surgery free summer, which isn't such a bad thing. I did fear surgery 2 would compress my digging schedule and force it into a box of dates; not so. I now can think of when I might pay more attention to rescue dogs because I have months to ready it for this event. A plan forms around a daily round of events; weeding, walking, working on a book I've started.
Health is an oddity. It doesn't exist as an absolute, and never in isolation from the fullness of the life it measures. Your health is your outlook as much as your temperature; you are more than the fact of your blood pressure. I keep trying to buoy my outlook with events and inch it forward through scenarios. Today, an inch through sunshine and working in the front yard; last night, by laughing at Amy Schumer on Comedy Central; yesterday, by riding back from Indianapolis and admitting to Charles that I was sort of glad I didn't have a huge surgery looming on my calendar just yet.
True, I want the hole fixed...but it's stable, I'm stable, I'm not dying quite as fast as predicted or as smoothly as intended. I keep introducing the turbulence of health that isn't all a collection of stats.
Yesterday I saw a maltipoo I wanted, a pair of shoes that I'd really enjoy, I heard music that made my 20 something body twitch, talked to a surgeon, stopped in Martinsville to buy some Orgain at Walgreens. I had a day of it, the kind of day that ties me to this stupid planet with joy and adds a measure of health to me that cannot be quantified.
I may never have those green leather shoes and it's doubtful that maltipoo and I will get together soon. What will happen is what is supposed to happen, at the time it should: I'll meet the dog I should help who can help me; I'll encounter the surgeon in August who might propose a better timeline, though hopefully one that takes my November birthday into account (a patched neck at 54 is better than one at 53, right?).
I had correspondence with a very old friend recently--perhaps the person in my life who has known me longest. He didn't know that I couldn't talk, and had not ever bounced back to Markhood from the intial treatments. I had shut down telling him or anyone individually as each of my hopes faded, feeling that burden of negativity wasn't something I wanted to enumerate for anyone. I glossed them in an email--"and then I found I would never eat again," and "at that point it was obvious that I couldn't speak, ever." I saw within those words where I've been over the past year.
I realized I'm ready to drop the negativity out of the events and just let them be that--events. Markers that changed me as I moved. Ways to be that are no longer viable replaced by something new. Places I was and people who were there who aren't now, me included. Welcome to the emancipation of not getting what you want, Mark. Welcome to the world of Surgery 2.
Surgery 2 is a complicated manuever to cover up failed tissue in my neck--a hole that radiation burned into me, a window into my neck, a grate I cover twice or three times a day with fresh gauze and tape, my own sewage pipe. It's the reason I can't blow my nose, it's the stiff that keeps my neck from its old giraffe-ish tendencies, it's a complete pain in my tuckass, it's the leftovers of treating cancer by killing its victim.
To cover this large hole, Surgery 2 would pull my pec muscle up from the right side and a skin graft would normalize the outside--but there is an artery over there, the carotid, there are risks to this sort of surgery (somewhat big) and there is blood supply to the altered body geography to consider.
The surgeon? Happy enough with my progress after surgery 1; happy enough with my gardening, and general sassiness, my grey wingtips and my polo shirt; happy enough with the decline of pain in my mouth. But not ready to schedule Surgery 2, and not certain it's time to take this risk, and not inclined to work on my "get this shit done" schedule.
And that is me--get this done. Let me heal, let me get back to a normal, let me blow my nose--but I only know what I know. I don't know squat of risk and function--I only know me. I can't look at myself top down, I only see slant upwards. I only know that I want it done, not what doing it costs. So I have to defer to the surgeon, and there's more waiting, at least until we reconvene this session in August.
So I have a surgery free summer, which isn't such a bad thing. I did fear surgery 2 would compress my digging schedule and force it into a box of dates; not so. I now can think of when I might pay more attention to rescue dogs because I have months to ready it for this event. A plan forms around a daily round of events; weeding, walking, working on a book I've started.
Health is an oddity. It doesn't exist as an absolute, and never in isolation from the fullness of the life it measures. Your health is your outlook as much as your temperature; you are more than the fact of your blood pressure. I keep trying to buoy my outlook with events and inch it forward through scenarios. Today, an inch through sunshine and working in the front yard; last night, by laughing at Amy Schumer on Comedy Central; yesterday, by riding back from Indianapolis and admitting to Charles that I was sort of glad I didn't have a huge surgery looming on my calendar just yet.
True, I want the hole fixed...but it's stable, I'm stable, I'm not dying quite as fast as predicted or as smoothly as intended. I keep introducing the turbulence of health that isn't all a collection of stats.
Yesterday I saw a maltipoo I wanted, a pair of shoes that I'd really enjoy, I heard music that made my 20 something body twitch, talked to a surgeon, stopped in Martinsville to buy some Orgain at Walgreens. I had a day of it, the kind of day that ties me to this stupid planet with joy and adds a measure of health to me that cannot be quantified.
I may never have those green leather shoes and it's doubtful that maltipoo and I will get together soon. What will happen is what is supposed to happen, at the time it should: I'll meet the dog I should help who can help me; I'll encounter the surgeon in August who might propose a better timeline, though hopefully one that takes my November birthday into account (a patched neck at 54 is better than one at 53, right?).
I had correspondence with a very old friend recently--perhaps the person in my life who has known me longest. He didn't know that I couldn't talk, and had not ever bounced back to Markhood from the intial treatments. I had shut down telling him or anyone individually as each of my hopes faded, feeling that burden of negativity wasn't something I wanted to enumerate for anyone. I glossed them in an email--"and then I found I would never eat again," and "at that point it was obvious that I couldn't speak, ever." I saw within those words where I've been over the past year.
I realized I'm ready to drop the negativity out of the events and just let them be that--events. Markers that changed me as I moved. Ways to be that are no longer viable replaced by something new. Places I was and people who were there who aren't now, me included. Welcome to the emancipation of not getting what you want, Mark. Welcome to the world of Surgery 2.
Sunday, April 6, 2014
For those about to spade, I salute you
It is April 6th. The air is a bit chilly this morning. Routinely at night it descends close to frost, 34 or so. Inside the houses where the furnace still switches on as if it's Winter, the gardeners are itchy.
Groceries and farmer's markets are pushing us ever forward to plant now. Offering plants that obviously need homes, a nice place to spread their roots. Yet it's too early. Don't put that basil out! if you must, a bed of pansies. Otherwise, you're simply tossing money into the gaping maw of late season cold.
A few years ago, March in Indiana was unusually warm. Beginning at the month's start, it was in the 70's each day, even with the rain. At night, it didn't decline much south of the 50's. And we all fell for it--in went the rows of lettuce, wildflowers were sown, beds of annuals that animated the dreams of Christmas were realized. There were holdouts--people like my parents who married in late May in Northern Indiana in 1945, a year when they woke up on their wedding day to frost. They would no more put a plant in the ground before Memorial Day than fly to the moon. Never!
They were right that year. All that early planting in March's balminess was killed by a colder than normal April, and what plant managed to limp through successive cold nights was innundated in May by rains that were close to daily and epic. After the lick of a long season, we were treated to a growing season made cruel by the weird gyrations of the prevailing currents, the jet stream, the whimsy of a universe with a sense of humor.
I'm going out later today with the shovel to begin to revive beds that Charles had no time to work on when I was gone. My shade garden in the back is a mess of wild blackberries and these peculiarly ugly bushes that characterize underbrush in Southern Indiana. Most of what I've placed back there has been choked out by violets, the hostas and ferns being too tamed to compete. This bed took the place of mossy bare ground that suffered under the spread of a maple and a dogwood, so the plan to encourage growth here worked beautifully--just not necessarily growth I wanted.
I've had a lot of growth I don't want in the past several years, gardens both external and internal. The wild pattern my cancer has taken, the aggressive and barely contained way it has spread has its direct correlative outside. I have been advised to spade at myself in the like manner I'm going after the back yard today. To see myself as a warrior with a spear, a gardener with a shovel, and cancer like a violet bloom where one was never wanted.
I have no disagreement with visualization and self empowerment; all I can see into it is a beautiful outcome of optimism and righteousness. I shall not simply be a victim.
As I go out, though, I wonder if my visualization can forgive the reality that I'm physically weak. That I can spade a small patch and need to rest, and plan for the next small patch I spade. A few years back, in those warm Marchs or Aprils, I could and did spend hours prepping my beds. I could say within one or two weekends that I was ready for the season. Now, I see this procss stretching into June, a square foot at a time.
I've grown old before my time because of cancer. I watch how I walk, I can feel an increasing unsteadiness that comes from being a lot more sedentary. I can feel that exertion is not as welcome, that the guy who loved push ups is not the guy who finds the shovel surprisingly heavy. The impatient gardener has to become the one who plants on successive days, without the oomph it takes to place plants in three large beds and still has the juice to start digging out a fourth.
Judged against the possibility of being dead, this is not the biggest problem in the world, right? Yet when you're measuring the diminution of your life, please tell me that seeing the tape measure decline across the board isn't a bit depressing. That it takes over the mind to see that everything declines, and not in measure with one's years, but in the quick dunking a cancer-chewed life takes.
I have been told and have swallowed the fact that I'll never be cancer-free. I won't have one of those miracle remissions where I go back to normal. At best, doctors tell me that I could hope to work against cancer like a chronic condition that does not kill me but doesn't allow me a long leash to escape its kiss.
Well, it's not death. It's not hopelessness. Let's call it undergrowth, ugly bushes and those frigging violets--let's say it's the constant fight against grass up against my Lamb's Ear border. I just have to pace myself to fight it, knowing I can't--in a day's time--solve any of the problems it dumps on my doorstep or completely stop the choking it gives to my perennials. I am about to begin spading. I'll be doing that every day for the rest of my life.
Groceries and farmer's markets are pushing us ever forward to plant now. Offering plants that obviously need homes, a nice place to spread their roots. Yet it's too early. Don't put that basil out! if you must, a bed of pansies. Otherwise, you're simply tossing money into the gaping maw of late season cold.
A few years ago, March in Indiana was unusually warm. Beginning at the month's start, it was in the 70's each day, even with the rain. At night, it didn't decline much south of the 50's. And we all fell for it--in went the rows of lettuce, wildflowers were sown, beds of annuals that animated the dreams of Christmas were realized. There were holdouts--people like my parents who married in late May in Northern Indiana in 1945, a year when they woke up on their wedding day to frost. They would no more put a plant in the ground before Memorial Day than fly to the moon. Never!
They were right that year. All that early planting in March's balminess was killed by a colder than normal April, and what plant managed to limp through successive cold nights was innundated in May by rains that were close to daily and epic. After the lick of a long season, we were treated to a growing season made cruel by the weird gyrations of the prevailing currents, the jet stream, the whimsy of a universe with a sense of humor.
I'm going out later today with the shovel to begin to revive beds that Charles had no time to work on when I was gone. My shade garden in the back is a mess of wild blackberries and these peculiarly ugly bushes that characterize underbrush in Southern Indiana. Most of what I've placed back there has been choked out by violets, the hostas and ferns being too tamed to compete. This bed took the place of mossy bare ground that suffered under the spread of a maple and a dogwood, so the plan to encourage growth here worked beautifully--just not necessarily growth I wanted.
I've had a lot of growth I don't want in the past several years, gardens both external and internal. The wild pattern my cancer has taken, the aggressive and barely contained way it has spread has its direct correlative outside. I have been advised to spade at myself in the like manner I'm going after the back yard today. To see myself as a warrior with a spear, a gardener with a shovel, and cancer like a violet bloom where one was never wanted.
I have no disagreement with visualization and self empowerment; all I can see into it is a beautiful outcome of optimism and righteousness. I shall not simply be a victim.
As I go out, though, I wonder if my visualization can forgive the reality that I'm physically weak. That I can spade a small patch and need to rest, and plan for the next small patch I spade. A few years back, in those warm Marchs or Aprils, I could and did spend hours prepping my beds. I could say within one or two weekends that I was ready for the season. Now, I see this procss stretching into June, a square foot at a time.
I've grown old before my time because of cancer. I watch how I walk, I can feel an increasing unsteadiness that comes from being a lot more sedentary. I can feel that exertion is not as welcome, that the guy who loved push ups is not the guy who finds the shovel surprisingly heavy. The impatient gardener has to become the one who plants on successive days, without the oomph it takes to place plants in three large beds and still has the juice to start digging out a fourth.
Judged against the possibility of being dead, this is not the biggest problem in the world, right? Yet when you're measuring the diminution of your life, please tell me that seeing the tape measure decline across the board isn't a bit depressing. That it takes over the mind to see that everything declines, and not in measure with one's years, but in the quick dunking a cancer-chewed life takes.
I have been told and have swallowed the fact that I'll never be cancer-free. I won't have one of those miracle remissions where I go back to normal. At best, doctors tell me that I could hope to work against cancer like a chronic condition that does not kill me but doesn't allow me a long leash to escape its kiss.
Well, it's not death. It's not hopelessness. Let's call it undergrowth, ugly bushes and those frigging violets--let's say it's the constant fight against grass up against my Lamb's Ear border. I just have to pace myself to fight it, knowing I can't--in a day's time--solve any of the problems it dumps on my doorstep or completely stop the choking it gives to my perennials. I am about to begin spading. I'll be doing that every day for the rest of my life.
Thursday, April 3, 2014
Help, I need somebody!
Existential crisis meet Mark; Mark, Existential crisis.
We've all been here. There looms on the calendar a big day, an event, and you're standing in your bathroom days before picking at a zit, rubbing lotion on dry skin, evening your tone, whitening your teeth--and what should be white is yellow, what's normally pinkish is fever red, where peach glows normally there's a patch of brown. This is where I am, and I know it sucks.
I've been living the undisturbed life, and life in stasis, since my plane landed in Indianapolis in January. I've deflected invitations and excused myself from interactions. I've told myself that I'll become social again after I've recovered from surgery, then surgery 1, then surgery 2, I tell myself when the weather is consistently nicer I'll walk more and inevitably see people, I promise myself to pace my day with the sun when it's out, I say I'll be a presence. Instead, I'm a bit ghost-like, an apparition whose 50 foot walk to the mailbox is done as if on heels, head down, a shame runway. Even doing this I stand in the door and listen to see if there are cars coming, and hope to god that one doesn't round the corner as I'm deered in the headlights and unable to escape unseen.
No one forces me to do otherwise, and I am deeply grateful for the fact that I'm not living in a sitcom where there's a lesson to be learned, but living with someone who respects the fact that I'm a rational adult and can come to decisions entirely upon my own volition; no guilt pep talks, no bullshit, thank you Charles! I really am planning to garden this Spring, I promise!
I am being tempted out of my self-hardened shell though by the one temptation guaranteed to crack me--a lecture being given on campus that I want to attend. On campus! People, and lots of them! in the IMU, center of campus, on a Friday afternoon!
This lecture, in fact, will be heavily attended by many people I haven't seen in over a year--it's the Trivedi Memorial Lecture, sponsored through the Dhar India Studies Program at Indiana University, where I worked for a year. I may not have mentioned it previously, but that was one of the best years I passed at IU--I met people, went to talks, and engaged with a culture that is amazing, complex, venerable. I conspired to find ways and means to get myself to India, to experience it, which now I think will not happen (travel is, at best, a complicated procedure for me). Although I don't miss some of the paperwork, I deeply miss the people work, the small feeling that I was part of bridging the gap between here and there.
So this year, the Trivedi Lecture is "Democracy, Socialism and Liberalism in a Complex Society: Nehru's India in the 1940's and '50's" given by Sir Christopher Bayly of Cambridge and the University of Chicago. Just typing that sounds interesting to me. Sure, I may reveal my geek credentials, at least one of them, but a talk like that is usually the type of bullet of sets me going in a great direction of thought. I'll ponder, I'll find a book or two, I'll come to agree or disagree with what I've heard, I'll head on my merry way to the next topic. Yes, I'm a dilletante, and that has negative connotations, but so be it. I know an inch deep on an ocean's worth of topics, and I'm always willing to listen to experts who can drill a bit deeper than me. Put Nehru and India in front of me and I'll shut up and say nothing until the speaker is done with the business at hand.
I mention this because I'm really pushing myself to go, but there is push back from inside. I say, "Mark, this sounds fascinating" and I then say back "but Mark, you'll see all those people you used to work with, and work for, and no one will recognize you, and you'll freak them out, and people will try to talk to you and you can't talk and this won't end well." I hear this voice that says to me: "people will talk about you, pity you, stare at you" and that does not move me to want to go.
I am pushing myself to go against the advice of voices that are judgey and relentlessly negative about other people--probably because I would have pitied, and I likely would have stared and perhaps I'd have talked were I one of them, and someone else occupied my space. I can hear my voice saying: "That's Mark?" in a way that implies both incredulity and a bit of revulsion. I'm not perfect, I'm not near it, and my past behavior isn't whitewashed by my benighted present.
Things might happen between now and then, but I'm posting this entry, # 101, in honor of getting the hell over myself and making something happen and appealing to anyone who reads this to make me get the fuck over it and go do something that would be incredibly enjoyable to do. I would have to do some really wild shit to accomplish this--I'd catch the city bus on Kinser Pike, ride down to campus, get out and walk up to the Unioin Building which will be full of people, walk through the building to the lecture room, engage with all those coworkers and colleagues who haven't seen me, and find ways to indicate to them that I can't speak (I'll have to have my Ipad with me), and likely walk over to the Music Library when the lecture is over and catch a ride home with Charles from there. That's a hell of a lot of territory and exposure for a guy who has covered little and had virtually none. It's as if a virgin were to become a prostitute as a first job. Learning to swin by being thrown in the deep end.
It could be a one-off, or it could be the start of something--that eventually I'd become unremarkable by being seen in my surgical mask (yep, sorry, gotta wear that--the mouth hanging open thing is not for public consumption), that another lecture, an Early Music performance, an opera, a poet, actor, public official speaks on a topic of concern, and I might unremarkably be a part of the audience.
So, as part of that, I'm posting with this a morning selfie, taken in my bathrobe, hair is a mess, me in my surgical mask with my trach tube, looking pretty much as I now look everyday. The strip tease is over. Even if I can't get to the Trivedi Lecture, and even if my walks to the mailbox continue to be a bit courage backwards, let this be a mark of progress. I look like hell and I don't care quite as much as I fear I should, more than I need to, less than a normal 53 year old but sort of like what happens to any person who undergoes great change, at a moment's notice, and can't ever find a way to change back.
It's only forward from here, even if we don't know to where.
We've all been here. There looms on the calendar a big day, an event, and you're standing in your bathroom days before picking at a zit, rubbing lotion on dry skin, evening your tone, whitening your teeth--and what should be white is yellow, what's normally pinkish is fever red, where peach glows normally there's a patch of brown. This is where I am, and I know it sucks.
I've been living the undisturbed life, and life in stasis, since my plane landed in Indianapolis in January. I've deflected invitations and excused myself from interactions. I've told myself that I'll become social again after I've recovered from surgery, then surgery 1, then surgery 2, I tell myself when the weather is consistently nicer I'll walk more and inevitably see people, I promise myself to pace my day with the sun when it's out, I say I'll be a presence. Instead, I'm a bit ghost-like, an apparition whose 50 foot walk to the mailbox is done as if on heels, head down, a shame runway. Even doing this I stand in the door and listen to see if there are cars coming, and hope to god that one doesn't round the corner as I'm deered in the headlights and unable to escape unseen.
No one forces me to do otherwise, and I am deeply grateful for the fact that I'm not living in a sitcom where there's a lesson to be learned, but living with someone who respects the fact that I'm a rational adult and can come to decisions entirely upon my own volition; no guilt pep talks, no bullshit, thank you Charles! I really am planning to garden this Spring, I promise!
I am being tempted out of my self-hardened shell though by the one temptation guaranteed to crack me--a lecture being given on campus that I want to attend. On campus! People, and lots of them! in the IMU, center of campus, on a Friday afternoon!
This lecture, in fact, will be heavily attended by many people I haven't seen in over a year--it's the Trivedi Memorial Lecture, sponsored through the Dhar India Studies Program at Indiana University, where I worked for a year. I may not have mentioned it previously, but that was one of the best years I passed at IU--I met people, went to talks, and engaged with a culture that is amazing, complex, venerable. I conspired to find ways and means to get myself to India, to experience it, which now I think will not happen (travel is, at best, a complicated procedure for me). Although I don't miss some of the paperwork, I deeply miss the people work, the small feeling that I was part of bridging the gap between here and there.
So this year, the Trivedi Lecture is "Democracy, Socialism and Liberalism in a Complex Society: Nehru's India in the 1940's and '50's" given by Sir Christopher Bayly of Cambridge and the University of Chicago. Just typing that sounds interesting to me. Sure, I may reveal my geek credentials, at least one of them, but a talk like that is usually the type of bullet of sets me going in a great direction of thought. I'll ponder, I'll find a book or two, I'll come to agree or disagree with what I've heard, I'll head on my merry way to the next topic. Yes, I'm a dilletante, and that has negative connotations, but so be it. I know an inch deep on an ocean's worth of topics, and I'm always willing to listen to experts who can drill a bit deeper than me. Put Nehru and India in front of me and I'll shut up and say nothing until the speaker is done with the business at hand.
I mention this because I'm really pushing myself to go, but there is push back from inside. I say, "Mark, this sounds fascinating" and I then say back "but Mark, you'll see all those people you used to work with, and work for, and no one will recognize you, and you'll freak them out, and people will try to talk to you and you can't talk and this won't end well." I hear this voice that says to me: "people will talk about you, pity you, stare at you" and that does not move me to want to go.
I am pushing myself to go against the advice of voices that are judgey and relentlessly negative about other people--probably because I would have pitied, and I likely would have stared and perhaps I'd have talked were I one of them, and someone else occupied my space. I can hear my voice saying: "That's Mark?" in a way that implies both incredulity and a bit of revulsion. I'm not perfect, I'm not near it, and my past behavior isn't whitewashed by my benighted present.
Things might happen between now and then, but I'm posting this entry, # 101, in honor of getting the hell over myself and making something happen and appealing to anyone who reads this to make me get the fuck over it and go do something that would be incredibly enjoyable to do. I would have to do some really wild shit to accomplish this--I'd catch the city bus on Kinser Pike, ride down to campus, get out and walk up to the Unioin Building which will be full of people, walk through the building to the lecture room, engage with all those coworkers and colleagues who haven't seen me, and find ways to indicate to them that I can't speak (I'll have to have my Ipad with me), and likely walk over to the Music Library when the lecture is over and catch a ride home with Charles from there. That's a hell of a lot of territory and exposure for a guy who has covered little and had virtually none. It's as if a virgin were to become a prostitute as a first job. Learning to swin by being thrown in the deep end.
It could be a one-off, or it could be the start of something--that eventually I'd become unremarkable by being seen in my surgical mask (yep, sorry, gotta wear that--the mouth hanging open thing is not for public consumption), that another lecture, an Early Music performance, an opera, a poet, actor, public official speaks on a topic of concern, and I might unremarkably be a part of the audience.
So, as part of that, I'm posting with this a morning selfie, taken in my bathrobe, hair is a mess, me in my surgical mask with my trach tube, looking pretty much as I now look everyday. The strip tease is over. Even if I can't get to the Trivedi Lecture, and even if my walks to the mailbox continue to be a bit courage backwards, let this be a mark of progress. I look like hell and I don't care quite as much as I fear I should, more than I need to, less than a normal 53 year old but sort of like what happens to any person who undergoes great change, at a moment's notice, and can't ever find a way to change back.
It's only forward from here, even if we don't know to where.
Tuesday, April 1, 2014
Number 100
This is officially the one hundredth post I've made on PCB. I have to admit I don't remember all of the previous 99 without reading. I can't claim that I know I've made an eternal golden thread of logic, that I've laid the highway to reason or the TCV to feel bettersville (though I can say I highly doubt that I've ever reached the outskirts of Feel Bettersville).
One thing I like about cancer is that it is very real. I respect the fact that its biological imperative is clear and unambiguous: destroy, destroy, destroy. Thus when there is growth in the body, hair that returns from chemotherapy, energy that pops up out of nowhere, a guy like me can have a momentary rush of optimism. I am beating the destroyer! I am winning! Any sign that destruction wielded with all the subtlety of a grim reaper has left a shoot of new grain can be seized upon and blown up to emotional propaganda.
I've been discussing emotional propaganda with Charles' new friend from Denmark, a firm believer in meditation and visualization, a student of Betty Shine and Louise Hay. Much of what is proposed in their perspectives makes perfect sense, even if they tend to express it in a sense I wouldn't--they cloak the mind as a place I'm not certain it is, impose a real world structure upon it as I wouldn't, but I'm attempting some of these techniques less critically because--what the hell--I'm not a shaman, an expert, or even a particularly deep thinker.
Rather like my father, I've tended to historically be dismissive of the power of the mind when applied to practical applications like healing. He, an iron-ribbed son of the Earth from Northern Indiana circa 1920, was on a lifelong search to be the biggest asshole he could possibly be in as few words spoken as possible. This is not to ignore that he had good qualities, many of them, but simply to tell you in as few words as possible that the Age of Aquarius never really dawned for James A. Price, Sr.
My mother was the more mystically oriented of the two, and even she would only go so far as to murmur agreement with the general sentiment that one felt better when one was in a good mood. My mother spent the last, oh, 20 years of her life with an antibacterial wipe in one hand and a foot in the family bathroom where she constantly complained that my father's urine spots would cause her to acquire Black Death, pneumonia, tuberculosis or SARS. Her idea of good time was sniping at my father with my sentence and limply praising her own unending labors with the other. Don't be fooled, the woman did work--indeed, all of my life she worked a fulltime job both inside and outside the home. My father didn't believe that a man should do housework and I think I know why I've always found it sexually confusing that I'm good at those tasks...
So there was no fertile ground here for New Ageist ideas to take hold, and plenty of flinty skepticism to keep the fragile beliefs from spreading their Tinkerbelle roots. So I'm trying to de-rock my psychic garden and shut the fuck up and get the fuck out of my own way for a change. I'm trying to accept that I'm stupid about the process of daily meditation, that I don't know the outcome before the effort and that anything, anything that makes me feel even the slightest bit better, or more empowered, or at least less helpless against cancer is welcome. And it is.
If there's a theme here, it's the mission to allow emotional progaganda to sway me in a positive direction, to open my creaking, nailed over chakras, to air out my crank old man-isms and accept that my breeding, my background and my life have not necessarily conspired to create in me the best of all possible cancer warriors.
I am trying to be open to Scott telling me I wasn't the most communicative of partners in San Francisco, that I kept the cancer safe and warm next to me, and the support cold and distant far from me. That I've allowed my horror at how I now look to isolate me and prejudge all my social interactions based up that fear I have of looking nothing as I used to, of rejection, of people wincing when they realize it's me they see...that I'm what's left of Mark.
There's nothing funny about feeling like a circus freak--and I know this because I do. I have to face up to the fact that I'm being run roughshod by vanity that just no longer applies. I have to face up to the fact that I feel like a failure because I can't come back to being the old Mark, the peanut butter eating, locquacious, snipey, judgmental good old Mark--failure because he's dead and try as I might I can't breathe him back into life.
But why should I?
On April 1st, a few years back, my father died. I wasn't upset, rather I was actually somewhat relieved. We'd always had an undercurrent of dislike between us, we'd always been at arm's length. We always chose to sit on opposite sides of the room. We weren't sympatico, we weren't meant to be friends. Sometimes when people pass on from our active lives, that's alright. Even those we are traditionally supposed to mourn most deeply may be more palatable through the veil than sharing this side of it. I could transfer some of this logic, it seems, to a state of mind that needs a thorough cleaning--the idea that I've failed because I'm not who I was.
I might visualize the possibilities that cancer offers me both destruction and a clean slate upon which to build. The idea of a threshed field, the visual of acreage mowed down on April 1st about to become a light green carpet. The sight of a man walking from far away toward me, whom I can't make out, making the slow, steady, occasionally unsteady and occasionally quite slow progress that light green makes toward emerald in high Spring, a man holding onto nothing but advancing forward nonetheless, letting the wind slice him clean and the sun warm him up in a new but not at all New Agey way.
Subscribe to:
Posts (Atom)