Struggles with Insanity

While my wife sleeps, I slink into her study and borrow her computer. She won’t mind, unless I spend too much time, robbing her of the opportunity to commence her morning ritual of examining the outcome of the world’s overnight gyrations. So I’ll be brief. More or less.

I watched bits and pieces of the Oscars last night, an exceedingly rare engagement for me. I mean, I haven’t watched the Oscars in years and years and years. Oh, I might flip through the channels and pause, but I almost never spent thirty or forty minutes watching them, as I did last night. My time wasn’t wasted, but neither was it invested in something that has the potential of changing my life. But the time I spent watching the actors and directors and cinematographers and such was informative. I learned that many of them either were deeply moved by their selection to receive an Oscar or they are, indeed, polished actors. Some of them shed tears. Perhaps the tears were real, perhaps they were formed in the eyes of alligators. They looked real. Well, some of them did. Lady Gaga, a woman about whom I know very little yet about whom I tend to be deeply judgmental (and not in a particularly positive way), seemed to have hired an alligator to manufacture her tears. Others seemed genuinely overcome with emotion; I prefer their stunned disbelief to overly-dramatic expressions that, in my perception, seem wooden and deeply artificial.

Yet who am I to judge? These are people who have been judged by their peers, the latter of whom have determined their performances to be worthy of lavish recognition. Wouldn’t I be overcome if my peers, whoever they are, heaped praise on me? Wouldn’t I be overwhelmed to be set upon a pedestal and to have my work identified as the product of a genius? Well of course I would. Not gonna happen, but I’d be astounded and deliriously happy, I think. But, then, I think…would it mean more for my peers to lavish praise on me or would I find my intended audience a more satisfying judge? I guess both would be meaningful in their own ways.

It’s a little late for me to go to film school. I’m not going to learn screen-writing in my old age. I doubt I’ll even finish a novel. Hell, a completed short story would be a stunning accomplishment for me. Who reads short stories? Who pays attention to those brief excursions into a writer’s mind that explore odd and emotionally malformed destinations? I think a new association is in order: The International Association of Deviant Short Story  Consumers.   It could be Short Story Deviant Consumers.

If there is justice in the world, my computer may be repaired and ready for use later today. In the absence of justice, I may sit in my recliner and complain about life in the computer desert. I could complain about other things. Health issues. Mental issues. The relativity of poverty. The problems with absolute wealth. The general unfairness of time and the fact that it behaves more and more like an hourglass the later in life it is examined.

My mind is racing through a rabbit warren this morning and I can’t seem to corral it. There are too many things to think about and not enough depth in my brain to allow them adequate exploration. Too much to think about. Too little meat on my mental bones. I’m a little more like a skeleton this morning than I was yesterday. Mentally, I mean. Physically, too, though. I weighed myself this morning and discovered I’ve lost three more pounds, though I don’t know where they went. I suspect they’re resting at the bottom of the rabbit warren, engaged in conversation with a forest of bones. The bones speak, of course, because they are suspended from strings tied to the ceilings of the rabbits’ subterranean den and the bones click against one another as rabbits scurry by, creating breezes that rattle what I’ll call bone-chimes. I know, you’re thinking the writer has lost his mind. But it’s not that; it’s just that the images in my brain haven’t been properly cataloged and collected to form a rational thought or two.

About that weight loss. I’m okay with it, despite the fact that the doctors aren’t. I prefer a thinner me to a corpulent me. Corpulence doesn’t become me. Well, it does. But I don’t have to like it. If only I could couple my weight loss with a corresponding gain in physical strength and stamina, I would be happier than I am at this very moment. But happiness isn’t the be all end all of our existence, is it? No, something else holds that banner. We just don’t know what it is.

Sanity is overrated. Insanity gives us the opportunity to discard all the unkind, unpleasant, unhappy aspects of existence, replacing them with the sounds of bone-chimes in the bowels of rabbit warrens. Even in that confusion, the existence that stands in for life is a decent alternative.

None of this means, of course, that I’m engaged in struggles with insanity. Instead, it simply means that sanity is an abstract concept that doesn’t lend itself well to “normal” assessment. Sanity and its aberrant twin are artificial notions that hide biases in plain sight. Strange twists that suggest I’m “crazy” are merely tricks to make others uncomfortable. I enjoy misleading. It’s one of the perverse joys of writing.

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Single Finger Thinking

Geek Squad called. They can fix my computer so I can use Microsoft Office 365, but the fix won’t last: “Your hard drive is failing.” So, I asked them to replace it. No charge for labor and only $54 for parts. Much better than the cost of a new notebook. But, I may still get a new one, sooner or later, to satisfy my need for instant gratification in case of another failure.

Before my conversation with the geeks, I called my brother in Mexico. Mine was a very late return call. I visited with him for a bit and spoke to my sister, who has been visiting them for a few days. She had been in San Miguel de Allende at a writers’ conference and decided to take a bus to Ajijic for a short visit. Though the conversations were short and I was feeling tired, I’m glad I made the call. My sister suggested I think about making a trip to Mexico in the summer and again in the fall, the latter in connection with my brother’s “big” birthday. I’ll think about that. I hope my other “big” trip doesn’t conflict. I checked. It doesn’t. But I’ll have to explore practicalities.

I’m feeling much better than I did this morning, but still on the low side of only moderately decent. I hope I continue to improve. One-fingered typing is unpleasant. So I will stop.

 

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Unprovoked Rage

I’m struggling with my iPad this morning, typing with one finger. I took my notebook to the shop yesterday. Cheyenne, the tech to whom I relinquished my technological soul, promised she and her crew would repair my computer. She promised it will be ready for me on Monday at 11. I hope I’m ready on Monday at 11. I was okay yesterday morning, but I cratered again yesterday afternoon. I fell asleep in my recliner again and awoke in time to attempt to eat dinner. I managed a bit. And I ate more ice cream, which is packing on enough calories to keep my weight up and increasing. That’s actually a little disappointing, though probably healthier than losing weight.

The doctors want me to down 8-10 glasses of water a day. I’m lucky to go through two. Swallowing is hard and my chest feels like it is about to explode when I’m able to swallow a mouthful. Enough of this BS.

I’m ready for something different. A different environment. A different attitude. A different lifestyle. I wonder whether life on a Caribbean island would suit me? Or, perhaps,  life in the desert of New Mexico or Arizona? I think I’m too old and set in my ways to adapt to a foreign country, though it might be gentler on my psyche than living in the throes of a psychotic narcissist’s daydreams. Not mine. 45’s. The bastard.

I wonder whether I will recover my old self after my cancer treatments? Will my body return to its old, comfortable ways? Will I ever breathe the way I once did, the way I did before an entire lobe of my lung was removed? Will my esophagus ever heal enough so it doesn’t hurt to swallow? Will the pains I feel in my chest and back and gut ever cease? None of my pains are excruciating, but they’re sufficiently disturbing to make me feel like I’m no longer me. They’ve displaced who I was and replaced him with an intellectual invalid whose body is no longer mine. Instead, my body belongs to an old man who can’t think clearly. If I could scream without waking the neighborhood and without destroying the remnants of my lung, I would. I need more than a road trip. I need to relocate to another planet, a place ablaze with molten bones that light up the universe as the universe erupts into its last screams. There. That should have emptied the rage, should it not? But, no, it simply ruined an otherwise unhappy morning.

This is the problem with one-finger blogging. It elicits rage. It causes angst and anger and madness unmatched in modern times. I will stop this or it will only get worse.

 

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Emerging from the Fog

Yesterday is gone. It slipped away almost unnoticed while I slept. The day started reasonably well, except for the pain. I was alert and aware. But after I wrote my blog post, complaining about the pain I feel when I swallow, the day disappeared into a vaporous cloud, a day I barely remember. I spent virtually all day in my recliner, either napping or making my way to or from a near-comatose state.

I should have expected my final two radiation treatments, coupled with my third chemo treatment, to have left me tired and ruined. But I didn’t. I didn’t anticipate that I would have lost such a long, long stretch of time to fatigue. After a full night of sleep, I spend another day essentially comatose. And, then, I went to bed early and stayed in that state for most of the night until around 3:00 a.m., when I woke and felt the effects of too much time reclining, with almost no movement. My muscles ached, my bones creaked and hurt with every movement. I got up, thinking I might be up for the duration, but the aching was more than I could comfortably deal with, at least upright, so I went back to bed. I finally got up around 6:00 a.m. I don’t feel as beat this morning as I did yesterday, but I can’t be sure this shred of energy will last. We’ll see.

If I can muster some energy today, I’ll take my computer in to people who might be able to repair the bastard. Something happened to it the other day that wrecked its usefulness to me. I can no longer open any Microsoft Office 365 programs; I get an error message. And I can’t open Google Chrome; I’m stuck with Microsoft Edge. And, unless I use my wife’s computer to retrieve passwords, I can’t check email. I’ve been threatening to replace my notebook computer. This may be the time. I’d like something extremely light, perhaps a Chromebook, but I want to be able to use MS Office without any complaints; I’ve heard that Chromebooks tend to be persnickety with MS Office. Persnickety computers tend to raise my hackles, elevate my dander, and otherwise annoy me to the extent that put me at risk of smashing the beasts against boulders. My mood this morning elevates that risk.

Something’s percolating in my brain this morning, a plot for a story built more on characters than the plot in which they find themselves. The plot first populated my brain while I was taking my one and only creative writing class from Michael Mewshaw while I was a student at the University of Texas at Austin. The plot revolved around the gentrification of an old, blue-collar neighborhood. The protagonist was a man who bought a house in the old neighborhood and found himself in love with the people there. His wife wanted those people to change. She wanted to trigger the gentrification that would replace the old-timers with younger, wealthier, better-educated people who would update and upgrade the houses in the neighborhood. I wrote the story. It was probably badly done. Mewshaw identified hundreds of holes in it. I don’t think he was impressed. But I haven’t forgotten the characters in that story, nor have I completely forgotten the plot. I’m relatively sure other people have since written the story, far better than I, and have built those characters into people who readers either loved or hated, depending on the readers’ perspectives. But I still think about the story and I may one day finish it. I think I may still have the original somewhere. I know I still had it a few years ago. But I may have thrown it away since. It was never very good and did not merit saving. Yet I did, for some reason. Maybe I saw in it something that Mewshaw didn’t. Or maybe I just wished it was the beginning of a brilliant writing career. If the latter, I was horribly wrong. The fact of the story’s neglect burns inside me. Not a burn like a raging fire but, instead, a burn like and almost-dead ember still hot enough to sear a memory into one’s brain. I don’t recall what title I gave to the story. And I don’t remember how, or whether, the plot developed. It wasn’t a good plot. But I was deeply attached to the motivation of the protagonist. I think, in fact, he was modeled after an older version of myself, as I envisioned who I was, and would become, at the time. I didn’t turn out that way, though. I was never to be the hero who saved a neighborhood from gentrification. I’m not quite sure how I turned out, what I did that might justify a story. For some reason, remembering the story I wrote so long ago (what, it’s been about forty-five years ago, right?) is incredibly depressing. Suddenly, I sense that I’ve spent 45 years simply getting by day-to-day without actually accomplishing a damn thing. Suddenly is the wrong word. I sense that every minute of every hour of every day; occasionally, though, that sense explodes into the daylight and is much more vivid.

Regardless of whether I have more energy today than yesterday, whatever strength I have won’t be spent writing about old memories or a lifetime of inadequacy. Instead, I’ll try to swallow the contents of a bottle of Ensure, shower and shave, and haul this computer to town. If I can emerge from yesterday’s fog, I’ll try to recover a piece of myself and do something productive. What remains to be seen. Maybe just tend to my scorched esophagus. I won’t be any good to anyone until that problem is fixed. Some lyrics from a John Gorka song, Armed with a Broken Heart, grab me at this moment, for unknown reasons. But here they are:

This sudden loneliness has made me dangerous
Please don’t watch me while I fall apart
‘Cause I’m sad and I’m angry
And armed with a broken heart

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Cancer Journal 28, 2019

Food has lost its appeal. I’m no longer in love with the textures and flavors of food. Instead, I seek only enough to survive and keep me from feeling hungry. And whatever I swallow has to give me as little pain as possible. Suddenly, the esophageal pain associated with eating has gotten much worse. I’ll give this turn of events another day or two, maybe until early next week, to correct itself before I ask the radiologist to intervene. I suppose it won’t correct itself; in the hope that I can heal myself, I’ll continue to take the medications he prescribed and will avoid foods that exacerbate the pain.

I thought the worst of it had passed and I was on the way to recovery. I guess the last few doses of radiation, though, broiled the lining of my esophagus. I didn’t help matters, I’m sure, by downing some rather spicy New Orleans style foods. Then, last night, I ate pizza. While it tasted good, it hurt. But, regardless of the pain, I finished two pieces. That was idiotic. This morning, drinking a glass of water is something of a struggle, though I’ve been able to down half a glass so far. But the pain in my chest tells me I’m paying for my dietary indiscretions.

Except for the fact that the oncologist’s and radiologist’s medical staff told me I should not lose weight, I’d look at this situation as an opportunity to lose weight. Water, alone, should do THAT trick. But they insist I should consume ample calories. And they gave me plenty of Ensure to do the trick. The label on the drink, though, as well as plenty of information I’ve received and read from other sources, suggests that Ensure and its brethren are, essentially, massive doses of sugar stuffed with vitamins and minerals that the body cannot easily process as essential nutrients. On the other hand, I’m lazy and tired and don’t feel like doing what I should, which is buy fresh ingredients and make my own nutritious shakes.

I’m counting on the prospect that my present state of mind—an aversion to food—will pass when my esophagus heals sufficiently. It may be just a day or two. It could be weeks. The radiologist advised me to continue his prescribed regimen (of aloe vera juice, foul-tasting tar-like goo, and chalky tablet crushed in two teaspoons of water) for at least two to four weeks after I complete my chemotherapy, which would be about five to six weeks from now. At this very moment, that sounds like an eternity.

It’s amazing how quickly one’s moods can change. Just a few days ago, I was almost elated that the process is nearing its end. Well, “almost elated” might be an overstatement; tired and grateful may better describe my mood then.

I haven’t written much about the effects of radiation on my skin. The treatments have caused a large swath of brown skin, covered with freckles, to appear on my back. And my skin is extremely sensitive across my chest, especially the right side, on my right side under my arm, and across my back (including that large swath). But that sensitivity pales in comparison to my esophagus. And I have at least five permanent ink dots on my chest and under my arms, not that I feel them in the least. But I’m tattooed now with those little dots.

I’d sure as hell like to feel compelled to write about something more interesting and more intriguing than my medical condition. I wish my brain weren’t so foggy. I think my level of “chemo-brain” is considerably less than many people experience, but it’s sufficiently present for me to notice it. And I don’t like it. I feel utterly devoid of creativity. I tell everyone I’m doing fine and making progress, but I feel more like I’m sinking into a vat of mind-numbing quicksand. I hope this sense of…whatever it is…dissipates quickly. I can’t imagine dealing with this for long.

A day or two ago I scrolled through quite a few old posts on this blog and was pleased to find a number of them I found creative, insightful, emotionally charged, and/or intellectually strong. Despite my happiness at finding them, though, I was struck by the fact that they are old. Nothing I’ve written lately—in the last year or so at least—fits those descriptions. I wonder if cancer robbed me of my creativity even before I knew I had the disease. Enough of this. It’s time to try to finish my glass of water and, then, force down a 220-calorie to 350-calorie sugar shake from the makers of Ensure. After that, it’s the aloe-vera juice regimen. Blech.

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A Clairvoyant’s Prediction and My Complaints

Recently, over lunch with a couple of friends from my church, the subject of Donald Trump came up. We’d already eaten, so it didn’t ruin the meal. One of the women said she had engaged in conversation with someone who claims to be capable of seeing into the future. The “seer” was asked whether the self-important narcissist would be impeached. No, she said, his end will come when the investigation into his extensive criminality reaches to family members closest to him and promises to bring the entire clan down. When he realizes there is no way out, he will commit suicide (I think she said by handgun) in the Oval Office.

After my recent posts concerning suicide and my sister’s volunteer efforts to help bring people back from that awful edge, I wonder whether she would have had compassion for Trump? I wonder whether she would have been willing to attempt to coax him back from the edge? I don’t know. I simply don’t. Perhaps, if I were a better person, I would try to convince him that taking his own life was not the answer. But I don’t think I’m that good. Instead, I think I might suggest to him that presidents before him had tried to take their lives and had not succeeded. This, I might say to him, is another opportunity to claim credit for a “first” in presidential politics.

I realize the very suggestion of such a crass and cruel thing paints me a demon. So be it. That’s the mood I’m in this morning. It’s all make believe. I have absolutely no belief that people possess special powers that enable them to see into the future. In those rare cases in which predictions come to pass, I attribute them either to chance or to strong research and highly educated guesses.

I’ve never had an interest in a self-styled clairvoyant’s predictions about my future because any such prognostications would be valueless. They would be wild guesses clothed in mystery—prophesies spun from the soothsayer’s assumptions and dreams. I choose not to invest energy in worries that might arise from unfounded beliefs built on foundations of vapor and dust.

***

On an entirely different subject, I think I’m in the midst of what I’ve heard called chemo-brain or chemo-fog. For the last few nights, I’ve forgotten to take my massive batch of “nighttime pills.” So, last night I set an alarm for 9:00 p.m., which I intended as a reminder to take them. The alarm sounded and, instead of taking the pills, I drank an ounce of aloe-vera juice (which I’m also supposed to do to help sooth the pain in my esophagus). I woke up at 4:00 a.m. to pee and, when I was in the bathroom, noticed that my evening pills were in their container, undisturbed. So I took them. That completely screws up the schedule for the remainder of the pills I’m supposed to take during the remainder of the day. I look forward to a drastic reduction in pill consumption as my cancer treatments end. I suspect, though, I’ll have to soldier on through at least late April before I can leave the majority of the stuff behind me. I can live with that. But this chemo-brain is not a happy experience. I forget things and get confused in short spurts. I hope it’s the chemo and not the start of something permanent.

***

Last night we planned to celebrate the end of my radiation treatment by going to a favorite pub for a drink and dinner with friends. But then we became aware of the fact that another restaurant was offering its New Orleans menu for the last time last night. So, we opted for the latter. We both had friend oysters and assorted sides. It was all good. And I had a Rogue Dead Guy Ale. Its taste was good, too. But all the food, as good as it tasted, was hard as hell to swallow. My esophagitis reduced the meal’s celebratory joy by a factor of eight. Bah! We’ll go to the original pub for a celebration on Friday or Saturday night. I hope by then the problem will have subsided. It will be, after all, several days after my last radiation treatment. My ale was the third alcoholic beverage in literally months. I’m still supposed to minimize consumption of alcohol for quite some time to come, but I’m willing to break the rules a bit for a celebration. So, whenever we get to the pub, I’ll try some wine or, perhaps, a gin martini. Ahhhh, that sounds delightful.

 

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Nine Years On

I’m surprised that my post yesterday, in which my sister’s disdain for “Suicide is Painless” was the focus, didn’t jolt my memory a bit harder. That memory was, I suppose, a precursor to remembering that today, February 19, 2019, is the ninth anniversary of her death, February 19, 2010. And Facebook reinforced that memory, when it reminded me of what I wrote that day:

Mary Eleanor Swinburn, my sister and one of my best friends, died this morning. She taught me that material possessions are meaningless; she lived that lesson and was one of the most compassionate people I’ve ever known. This world was better that she was here and it’s a sad place without her. I am heartbroken that she’s gone, but I celebrate her life.

We (family and friends) called my sister “Melnor” or “Mimi.” And we watched her rage through bureaucracies as she helped people, who were unable to look out after themselves and were being pushed and shoved around by them, get what was due. She could curse a blue streak when injustice threatened to harm people, but she could be as gentle and comforting as anyone I’ve known when someone needed support.

Nine years. It’s amazing that so much time has passed yet losing her is still fresh and painful. That’s the way it is with people you love.

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Cancer Journal 27, 2019

Today I will have the final radiation treatment designed to kill whatever cancer cells remained after surgery to remove the lower lobe of my right lung and the tumor housed therein. Radiation treatments caused me quite a bit of fatigue, off and on, but the most onerous side-effect was (and remains) a scorched esophagus. That side-effect made swallowing a painful undertaking. Sometimes it was tolerably painful, sometimes so excruciating that I howled in pain and rejected even wonderful food that, in other circumstances, I would have devoured like a starving wolf. The doctors prescribed a medication routine I’ve described before; it works, sort of, sometimes. The most horrific pains seem to have disappeared, but I’m looking forward to the elimination of all remnants of the side-effects in my seared esophagus.

Yesterday was round three of four for my chemo treatments. The next one will be three weeks hence. It will be “interesting” to learn what side-effects I might experience from yesterday’s treatment (and the one after), especially since they will not be exacerbated by the radiation treatment (at least not for long). It’s possible that the fatigue will come again; radiation may not have been the primary culprit. And it’s still possible that I might lose my hair; the fact that it hasn’t happened thus far is no guarantee of future experience. In fact, I heard from a couple of people within the last few days that their relatives lost their hair after the third chemo treatments. If it happens, it happens. Not much I can do about it, so I shall not worry. If it starts, I’ll head to the barber shop to have my head sheared extremely close.

After feeling pretty good all day, I crashed almost immediately after we got home. Fortunately, some friends stopped by the house while we were out having my treatments yesterday afternoon and left a big container of potato soup and a giant piece of cake. We had soup for dinner last night, capped with cake for dessert. They were both wonderful!  It was especially nice that we didn’t have to do anything more than heat the soup and, voilà, dinner!  Janine had a pretty long, demanding day, so the dinner was just what she needed. She steamed some fresh green beans to go with the soup; it was perfect.

Despite nearing the end of my radiation and chemo treatments, I’m fully aware that there’s still a lot of “doctoring” I have to endure. Today, I’ll get my follow-up appointment scheduled with the radiologist. I have a blood draw scheduled for March 7, just a few days before my final March 11 chemo treatment. And I’m sure I’ll have a follow-up visit soon thereafter with my oncologist. And there will be C.T. scans and P.E.T. scans and blood work and assorted other stuff I’ll have to deal with on a regular basis, interfering with what could otherwise be a calendar full of relaxed, empty schedules. Such is life. I’ll deal with it.

I’m looking forward to recovering my strength and, then, building my stamina. I haven’t felt really like myself since I underwent surgery on November 19. Even though that’s only three months, it feels a bit like three years. God, I hate cancer.

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Suicide is Painless

I remember my late sister’s outrage at the lyrics of the theme song for the 1970 film, “M*A*S*H.” She was a volunteer at the time for a suicide hotline. The lyrics of the first few stanzas of “Suicide is Painless” angered her to the point that she condemned the film entirely, if my memory serves me correctly. Here’s part of what upset her so much:

Through early morning fog I see
Visions of the things to be
The pains that are withheld for me
I realize and I can see

That suicide is painless
It brings on many changes
I can take or leave it if I please
That game of life is hard to play

I’m gonna lose it anyway
The losing card of some delay
So this is all I have to say
That suicide is painless.

And I understand her anger. I learned this morning the director’s [Robert Altman] son, Mike Altman, who was fourteen years old at the time, wrote the lyrics. Young teens tend not to understand the depths of depression unless they have experienced it for themselves. They can’t put themselves in the shoes of people who are experiencing emotional pain so great that suicide seems like the only real way to make it stop.

I was only seventeen or eighteen at the time and may not have understood, either, except for the fact that my sister was so vocal about the insensitivity of the lyrics. She spoke of how dangerous, in her eyes, they could be to individuals on the brink of making a decision to end their lives. And that sunk in with me. Despite the fact that I always found the music, including the lyrics, appealing.  Though painful. Yes, those lyrics caused me to tear up back then, when I was an emotional teen.

The meaning of the song’s lyrics, though, amount to nonsense, the sort of stuff one would expect from a mush-minded teen. Yet, coupled with the tune, they triggered something deep inside me. I think I felt a sense that I understood people who felt such emotional pain they might end their lives to relieve themselves of the mental anguish. That compassion, if that’s what it was, stayed with me through college. I actually felt that I completely understood the pain they felt. That sense is still with me, but in a fundamentally different way that I can’t explain, so I won’t try.

Today, the buzz word for people who actually feel others’ emotional pain is “empath.” I am skeptical of the word, its meaning, its connotations, and the legitimacy as applied to people. I say one can be empathic but not be “woo-woo.” I don’t buy that a person can feel another person’s pain any more than I believe a person can read or think another person’s thoughts.  I read something this morning I find especially silly: A person who is a psychic empath has a rare and special gift of being able to feel the emotions around him or her as if they were their own emotions.” [Credit where credit is due: https://psychicelements.com/psychic-empath.] Bah! My curmudgeonry is showing.

Back to my sister. I’ve written several times about her that “the underdog was her pet.” And that’s true. She was a champion for people who faced especially tough challenges. There was a bit of Don Quixote in her psyche, I think. So she felt compelled to draw her sword to challenge the lyrics of a song she thought dangerous and offensive. As I think back to her outrage over those lyrics, I am proud of her. That she was so outspoken about something that really mattered.

I have no idea why this train of thought entered my mind this morning. I guess the tracks just run through my brain and the locomotive followed.

 

 

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Too Tired to Care?

I read an online article from Maclean’s Magazine (a left-center leaning Canadian news magazine) yesterday that moved me to rage. The article dealt with a decision by a local police department to issue an “Amber Alert” in the middle of the night a few nights ago about a missing Brampton, Ontario girl. As a result of the alert, someone spotted her father’s car, leading to the man’s arrest. But it was too late for the 11-year-old girl; she was found dead.

The next morning, social media was abuzz with complaints about the late-night alert that awakened people. The police department logged 383 calls, mostly complaints, about the alert. People complained, among other things, that they were too far away from the crime to have done anything or that they were awakened even though their phones had been put on “do not disturb.” One man complained that “We do not work for [the police].” The complainers were angry about their interrupted sleep.  They were upset that they were being asked to contribute to work that they believed the police should do, with no public involvement. The article’s writer, Scott Gilmore, was rightfully indignant. Here’s some of what he wrote in response to the complaints made about the alert.

This is a comfortable land. Our cars have heated seats. Our winter coats have Bluetooth. Our hot dinners come right to our door. Life expectancy is higher than it has ever been, and crime is lower than we ever could have hoped.

How did this happen? Mostly because we as a society figured out how to move forward together. Collectively, we agreed to a mostly unspoken social compact: if we look after each other, we will all be looked after. There’s nothing particularly unique about this; it’s a variation of the “Golden Rule” which has been the bedrock of every civilization since Ur.

But we have grown so entitled to our comforts, we’ve forgotten that we have to pay for them, that we bear collective responsibilities. We can’t be bothered to vote. We resent paying taxes for public goods. We volunteer in our community less and less. And now we even begrudge having to help save the life of a child.

That is what citizens are complaining about today. They were asked to help save a child and this irritated them. In small towns, when a child goes missing everyone knocks on doors and wakes each other up and searches all night. Because in a community people look out for each other, they understand the duty we owe our neighbours. They recognize that if you want to live in a town that protects its children, occasionally you have to get up, go outside, and help.

In my opinion, the indignation expressed by the people who complained about the late-night alert is a symptom of a social illness that, if left untreated, will destroy decent society. If people are permitted to behave in such self-centered ways without being called to account for it, we will slip into the gutters, never to climb out. I am grateful that Scott Gilmore used his media platform to lambaste those who complained. I learned, from another Maclean’s article, that the Amber Alert was only the second ever to be sent to Ontario cellphones since the system was implemented last April. But the fact that it awoke people on a work night was an outrage.

Gilmore’s comment is extremely important: “in a community people look out for each other, they understand the duty we owe our neighbours.” That is the bedrock of society. that is what we are about. Without that compassion and caring for one another, we are doomed. Yet people seemed to be too tired to care that a child was missing. A child who later was found dead. I’m still angry about what I read.

For as long as the links are valid, here are the ones from which I learned of this event: first and second.

Posted in Anger, Compassion | 5 Comments

Cancer Journal 26, 2019

Yesterday, during my visit with my oncologist, I learned that the inquiry from Caris Molecular Intelligence a few weeks ago wasn’t entirely about “future treatments” if cancer were to recur. The genetic tests revealed that I have a “60% positive PD-L1,” which “might” suggest that I “might” be a candidate for an immunotherapy that could possibly help prevent a recurrence of my cancer. The immunotherapy would involve intravenous injection, every two weeks for a year, of a drug called Imfinzi (a brand name for durvalumab). There’s no assurance my insurance company would pay for it, the doctor says, because I don’t quite fit the profile of people for whom the drug is recommended: that is, people who cannot be treated for lung cancer with surgery. But, she said in effect, “it seems like the drug works for people who are otherwise like you, so it makes sense to try it.”

Once I got home, I did some research. PD-L1 is shorthand for Programmed death-ligand 1, not a particularly cheery name for a protein for which I am 60% positive. I’ll admit, the descriptions of the protein, as well as its functions, are more complex than I was willing to attempt to understand. But the mere fact that I might be a guinea pig outside the scope of a formal study was a bit off-putting.  Oh, and there are potential side-effects to treatment with the drug aimed at addressing PD-L1:

  • Lung problems (pneumonitis)
  • Liver problems (hepatitis)
  • Intestinal problems (colitis)
  • Hormone gland problems (especially the thyroid, adrenals, pituitary, and pancreas)
  • Kidney problems, including nephritis and kidney failure
  • Skin problems
  • Problems in other organs
  • Severe infections

The PD-L1 protein disguises cancer cells from the immune system. According to the AstraZeneca Infimzi marketing site, the drug binds to and blocks the PD-L1 protein, thereby allowing the immune system to “see” and attack cancer cells. And, the site mentions, “There is a chance that IMFINZI may affect healthy cells, too.” Yeah. The side-effects.

Before I learned more details about the immunotherapy than the oncologist shared, I said I’d consider it if the insurance company would pay for it. Now that I know a bit more, I think I’ll pass. I’ll take my chances than my PD-L1 proteins might disguise future cancer cells from my immune system. I’m not beyond changing my mind, but for the moment, I think I’d rather minimize the chances of the kinds of side-effects this treatment might bring.

Just three more radiation treatments and two more chemo treatments. As of next Tuesday, I’ll only have one more treatment left: my final chemo. I am looking forward to the end of this process.

 

 

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The Break, Season 2

Last night, I watched season 2, episode 1 (and part of 2 before I dozed…not because it wasn’t interesting, but because I was absolutely worn out) of The Break (La Trêve, in French, “The Truce”), a Belgian crime drama. I absolutely loved season 2 and I expect I’ll find season 2 equally as compelling. It is, in parts, gruesome, bloody, and stark, unlike whitewashed dramas on American television (except American television is addicted to gunfire exploding in fountains of blood). But those elements are not gratuitous; they contribute heavily to the story and the settings. Now that Netflix seems to be working properly (crossing all ten toes and most of my fingers), I can watch stuff besides HGTV re-runs, which makes TV viewing much, much more enjoyable. Perhaps I could find other enjoyable stuff, but my efforts on regular cable have failed miserably. At any rate, the series focuses on Police detective Yoann Peeters, who has moved from Brussels to his small hometown (in the first season). The quiet little place experiences a horrible homicide (an EXTREMELY unusual event) almost immediately upon his arrival. The first season followed his investigation of the homicide, all the while addressing his own psychological challenges (among other side-stories). The second season opens with another horrific homicide, almost immediately pinned on an emotionally and intellectually challenged young man who has just been released from prison for an earlier homicide (which he probably didn’t commit). I’ll leave it at that. Superb series! I highly recommend it (so far).

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Keeping Secrets

Who in your sphere of friends keep secrets that, if  told, could break hearts, ruin marriages, destroy friendships, shatter families, or otherwise upend moderately tranquil worlds? Perhaps the person in your sphere of friends who keeps such potentially explosive secrets is you. What have you done, or even thought, that you would never want revealed, even to your closest confidant?

For some, the secret may be grotesque and horrible; a brutal murder or vicious attack that left its victim physically or emotionally devastated. For others, it might be a lengthy extramarital affair that ended but whose love remains bottled up inside. And for still others, it could be something simpler but just as impactful: theft of money from a mother’s purse or father’s wallet that would, if revealed, unravel familial trust; a wife’s well-hidden alcohol dependency that her husband thought had been conquered.

I have vague memories of reading about a “game” in which participants wrote their closest held secrets on a piece of paper, folded the paper, and dropped it in a box. The game leader then pulled each paper from the box and wrote the contents of the slip on a chalk board. The object of the game was to guess which participant wrote which secret. Obviously, I’ve forgotten elements of the game; no one would be willing to risk revealing their secrets in such a way. Although, perhaps it would work if the participants did not know one another and hid their real identities. I think learning the most intimate secrets held by strangers would be both interesting and cathartic. I suspect that learning those secrets might make mine seem less onerous, easier to carry. But learning others’ secrets would not free me to reveal my own. We hold our secrets as if they were deadly poisons; we think their release would surely kill someone, either ourselves or someone close.

It’s possible, of course, that I may be wrong about secrets. Maybe most people don’t have secrets they guard like the crown jewels. Perhaps I, alone, can remember things I want no one else to know. But that can’t be true, either.

That box into which people drop their secrets is appealing. I’m curious to know what strangers wrote on those pieces of paper. Knowing their secrets, though, would make them more intriguing. I’d want to know more about why the secrets are so private, why it is so important that they be kept. How did the events leading to the secrets unfold? Those questions are what make people so interesting. Sometimes. I suspect there are those whose secrets would be dull and uninteresting. I suspect some people live tedious, vacuous lives. Some people might consider mine as fitting that description. We don’t know what others face and, because we won’t share those secrets, we can’t compare our lives to theirs. Perhaps that’s for the best. We shouldn’t compare ourselves to others, only to our wishes and dreams. That’s enough, though, to hurl us against the edge of the universe and make us cry out in pain. This is going off-course, so I’ll leave it there.

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Cancer Journal 25, 2019

Nothing much new, except that painful swallowing continues. It’s possible, of course, that it could be far worse without the extremely inconvenient medication regimen after every meal. One of the medications, nystatin suspension, apparently is in short supply for some reason. I tried to get the prescription refilled yesterday, only to find that no nearby pharmacy has it. Finally, after some gnashing of teeth, a compounding pharmacy outside the west gate got my radiologist to agree to a replacement, clotrimazole. I haven’t taken the new stuff yet, but I know it’s different from the nystatin. For one thing, it smells like grape jelly, one of my least favorite odors on the planet. For another, it must be refrigerated.

If my calculations are correct, including today, I have only six more radiation treatments left. It’s my understanding that my painful swallowing may last three or four weeks after treatment ends. Or, according to what I’ve read of long-term side-effects, the pain could continue forever. I hope that’s not the case. I sincerely do.

My next chemo treatment is next Monday. The final chemo treatment will follow three weeks hence. There’s light at the end of the tunnel.

Posted in Cancer, Health | 3 Comments

Unbearable Mistakes

A quote attributed to North Carolina Republican Congressman Walter Jones, who died yesterday, saddens and moves me.

“I did not do what I should have done to read and find out whether Bush was telling us the truth about Saddam being responsible for 9/11 and having weapons of mass destruction. Because I did not do my job then, I helped kill 4,000 Americans, and I will go to my grave regretting that.”

Later, he told a reporter:

“I have signed over 12,000 letters to families and extended families who’ve lost loved ones in the Iraq and Afghanistan wars, and that was for me asking God to forgive me for my mistake.”

Some mistakes can never be undone. Their effects can be so horrific that to fathom how a person who makes them can live with himself. But people make such mistakes all the time. People commit murder in unchecked rages and, almost instantly, regret their actions. They want nothing in the world more than to undo what they have done, but it’s impossible. Regardless of their regret, though, our society demands some form of retribution. We demand extended prison time or, in many cases, a death sentence. Because, we argue, no matter how remorseful a person may be, the act of killing another human being is so horrible that only the most monstrous penalties are appropriate.

How is it that we cannot forgive a person who commits a single instance of murder yet we can forgive someone like  Congressman Jones, who admits to contributing to the deaths of thousands? Obviously, Congressman Jones did not intentionally kill those thousands, but his actions helped contribute to their deaths. How do we differentiate him from others? How do we permit ourselves to pity him and understand his regret, while maintaining our condemnation of the person who, in a blind rage, took someone’s life?

Lest it be unclear, I’m not arguing that we should offer blanket forgiveness and pity for murderers. I’m only asking myself how we justify, intellectually and emotionally, treating responsibility for the deaths of thousands differently than we treat responsibility for the deaths of individuals? How can I feel sympathy and empathy for Congressman Jones’ sense of regret and remorse, while allowing myself to feel no such emotional bond with the woman who, in a fit of rage, shot her unfaithful husband? Or have I simply conditioned myself to abandon my empathy and sympathy for the murderous woman because society has told me it’s the right thing to do?

I think the fact that people express deep remorse for their unforgivable acts is one of the reasons I long ago decided that I’m not only not in favor of, but actively oppose, the death penalty. That, coupled with the very real possibility of unjust convictions of innocent people, changed my mind. I still feel rage and anger and a desire for revenge against people who commit heinous crimes, but I temper those wishes with the knowledge that questions of guilt or innocence and real regret always are at play. My compassion for those judged guilty doesn’t compare to my sense of compassion for victims and their families, but it is sufficient to make me err on the sides of certainty and remorse.

Though I know very little about Congressman Jones (other than the fact that he switched parties from Democrat to Republican , that he regretted his votes in favor of the Iraq invasion, and that he was among those in Congress who pushed to rename french fries as “freedom fries” after the French opposed the 2003 U.S. action against Iraq), I feel empathy for the man. I hope he was able to finally believe, before he died, that he was forgiven.

 

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A Modicum of Control

Between unsuccessful attempts to fall asleep…and moments in which consciousness finally eluded me…last night, I escaped the bonds of rationality and reason. During those in-between moments when I was neither awake nor asleep, my mind took me to a point in the future when I will be utterly alone. It is at that point that I will be free to make decisions, if I am alive and sentient, unrestrained by the effects of my choices on other people. And that’s where my mind took me last night, half-awake and half-asleep.

In my fantasy, if that’s what my fugue-state was, I had sold everything I owned except for some clothing and a few personal effects. My most pressing thought was to make a decision on where to go—where could I go to start a new life with nothing chaining me to the person I had been before? I suppose sleep found me before I found that magical place, but I remember three places were on my mind: the Florida Gulf coast, the outskirts of Lincoln, Nebraska, and Costa Rica. What a bizarre mix.

What’s most odd about this partial-conscious dreamscape is that I was attempting to completely escape my past life. My intent was to cut all ties to the self that had existed theretofore. I was planning to launch a new me in a new place. That’s an absurd fantasy that a very small number of people ever try to achieve and fewer still actually achieve it. I wonder whether my escape from my past life was, in some Freudian way, actually an attempt to escape from my cancer. Despite my confidence that this cancer will be beat, I know it’s possible that it will return. So, perhaps, my effort to escape to a new place was symbolic of my desire to escape from the reality from which I know there is no escape.

Sometimes, I overthink things. I allow myself to delve into places in my mind that would best be left undisturbed. I should allow my mind to concentrate, instead, on taking my medications, eliminating the pain I feel when I swallow, and thinking of the real future over which I have a modicum of control.

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Questions of Privilege

Most people on Earth are “better off” in some way than at least some other people. Some have access to more food. Others live in more secure or better shelter. The surroundings of some are more reliably safe. Others can depend on a healthier or safer food supply. Some people have more money to buy a more reliably secure lifestyle. Others live in the lap of luxury and never want for any basic needs. Some people are isolated from physical and emotional threats that plague others. Unfortunately, a significant number of people live in constant fear, not only for their own physical and emotional safety but in fear of inadequate or unsafe food and water and shelter.

For each of those people, where does society draw the line between having too little and too much, in comparison to others? Does the person with a barely adequate supply of safe and reliable food have an obligation to share with others whose supplies meet neither measures? Is the person fortunate enough to live in secure shelter obliged to share it with those whose shelter is worse or less secure?

In each case involving people more fortunate than others, we can say they are privileged in some form or fashion. They live more comfortably than others, at least along a single dimension. Does that good fortune carry with it an obligation to share? Or, if not, does that good fortune carry with it a moral obligation to at least feel guilt for undeservedly having “more” or living in better circumstances? For the sake of contemplation, let’s assume that no one along any continuum has “earned” his or her place. Everyone has worked hard to achieve whatever he has. The “luck of the draw” has enabled those with plenty to acquire more than they need. That same “luck” has withheld largess from people who suffer from paucity.

The point of these questions, and this contemplation, is to frame ideas of obligation. What are we obligated, as humans, to do? And, perhaps as importantly, to feel? Should I feel guilt at my good fortune in comparison to a poor beggar on the streets of a village in an impoverished country? Does feeling guilt count against any obligations I might have to share my largess? Does simply recognizing my privilege count in any way and, if so, how? Am I under any moral obligation to minimize the extent of my privilege so that someone else might rise part way toward that privilege I once enjoyed?

None of these questions have “correct” or “incorrect” answers. They are just questions that merit some attention. Yet they “feel” like they ought to have correct answers. They “feel” like we ought to know when we have too much and, therefore, should share without expecting anything in return. But we don’t know. And that’s the source of guilt; not knowing how much we should share or, knowing, not sharing.

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Film Nibbles

I watched The Angel the other night, the true story of Ashraf Marwan, who was President Nasser’s son-in-law. He was also a special adviser to Nasser’s successor, Anwar Sadat, at the same time he served as an asset to Israeli Intelligence. I found the film fascinating (though motivations were a bit confusing from time to time), up until near the end. Somehow, it sort of fell apart late in the game, but I’m glad I watched it nonetheless and I’d recommend it. The film is based on the New York Times bestselling book, The Angel: The Egyptian Spy Who Saved Israel, by Uri Bar-Joseph. The actor who briefly played Muammar Gaddafi, Tsahi Halevi, was a very visible cast member of Fauda, which I just finished watching a few days ago.

Speaking of Fauda, I found both seasons  absolutely riveting. I sort of wish I’d gone back to watch season 1 again before starting season 2, as I was confused for a while, but not irretrievably so. I can’t say enough about how well the subtitles were done; I simply forgot I wasn’t watching it in English.

Speaking of foreign television series, season 2 of The Break will be available on Netflix on February 9. Season 1 of this Belgian TV series was fantastic. I can hardly wait to see season 2.

 

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Trouble in Iceland

My affinity for, or interest in, things Icelandic is evident in the fact that sixteen posts on this blog mention Iceland (seventeen including this one). It’s a disease, I think, this longing for immersion in cultures to which I have absolutely no connection and for which my fascination has no reasonable explanation. Today, that fascination and interest, legitimate or not, are being tested.  You see, I learned today that the country has an official naming committee that determines the acceptability of names which may be given to children. Really! As I started to skim the Iceland Monitor, an article on the subject attracted my attention. Or, should I say, the article attracted my immediate disbelief and disdain (combined, in an odd sort of way, with appreciation).  I’ll quote from the article:

The famous Icelandic naming committee which decrees which new given names in Iceland are allowed or not have said no to names Carlsberg and Danski…The middle name Carlsberg, of Danish origins does not comply to Icelandic rules of grammar and neither does Danski…Boy’s name Javi and girl’s names Kolþerna, Einara, Ásynja, Elízabet, Emanúela, Baldína and Natalí were accepted however.

Can this be real? Yes, in fact, it can be and is. Iceland established the Naming Committee in 1991 to determine whether new given names not previously used in Iceland are suitable for integration into the country’s language and culture. Obviously, Icelanders are cultural purists, which in many respects I find patently offensive. On the other hand, I can appreciate the desire to preserve and protect one’s cultural legacies. But to control the names parents give to their children? Hmmm. My immediate reaction is negative, but I have to consider that negative reaction in the context of my own evaluation of the Icelandic culture…viewed through the prism of my own biases.

The relative offensiveness (or lack thereof) of Iceland naming restrictions depends to a great extent on whether the restrictions lead to corollary debasement or derision of other cultural naming conventions (or, for that matter, other elements unique to other cultures). If the Iceland conventions do not have the effect of either degrading other cultures or holding Icelandic culture as superior to them, then the practice would not be, in my book, offensive. Odd, perhaps, but not offensive. But if Icelanders (or a subset thereof who hold sway with the Naming Committee) viewed non-Icelandic names as inherently inferior to Icelandic names, then the troubles begin.

I have to wonder whether anyone else, outside of Iceland, finds this topic even mildly interesting? Maybe my strange fascination with arcane trivia explains my relative social isolation. It shouldn’t be too problematic, though, inasmuch as my interest is superficial and short-lived. It’s not as if I drone on and on about Icelandic naming conventions and the extent to which they might suggest either covert or overt xenophobia. Hmmm. If I were to pursue writing fiction again (which I think I suggested I might or might not), a story line involving a Colombian xenophobe who detests Apache and Icelandic cultures might be worth exploring. Or maybe not.

 

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Cancer Journal 24, 2019

My radiologist resumed my radiation treatments today. I didn’t expect that he would in light of the fact that the pain I feel when I swallow hasn’t receded at all. He said “I hope the pain goes away after we complete all the treatments.” Yeah, me, too.

I lost a meager 4 pounds since last week, which was 4 pounds more than they wanted me to lose. I would have preferred losing 24 pounds, but that’s probably really pushing it in a week. I just finished eating several cookies and a couple of pastries, which probably will put my weight loss in the negative column for next week. That, plus the ice cream and macaroni & cheese that’s easier to eat than most other stuff.

Pain seems to be on the increase in my gut and on my skin. I’ll have to explore than with a doctor next time I see one. I’m surprised the next blood draw won’t be until a week from today. That will make it thirteen days between blood draws. I think they forgot one, but even after inquiring of the nurse, I was assured that, no, the schedule was intended. Except their original schedule, which remains on my portal, disputes that. Even after I pointed that out, the “nurse navigator” insisted the original schedule was highly tentative. Hmmm.

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Mental Sprawl

According to a news story I read a day or two ago, scientists or physicians or some other academically qualified researchers have determined that anger can be a symptom of depression. As I recall, the piece suggested that people who easily erupt in anger may be depressed. That seems to be the case especially when displays of anger burst forth against those close to them. And, it seem, it may be true for those who have a “hair trigger” that causes them to explode, then quickly recover. Reading the article made me wonder whether my life-long tendency toward spontaneous, but short-lived, gusts of anger may be symptomatic of depression, rather than an emotional system that never developed beyond the juvenile stage. I’ve long suspected, for a variety of reasons, that I may suffer from a fairly mild form of depression. But I’ve never shared that suspicion with anyone; certainly not with a medical professional who might be able to determine whether my suspicion is well-founded and who might be able to help address it, if it is. As much as I’ve always thought myself more intelligent than to stigmatize mental illness, I’m not so advanced when it comes to considering that it might affect me. Maybe I’ll overcome that embarrassing character flaw and actually look into it. Next month, I have an appointment with my primary care doctor. If I can muster my courage, I’ll explore it with him. The brief visit with him could become more involved than either of us planned, if I actually pursue all my questions with him.

Of course, I may be suffering from nothing more than hypochondria. But, then again, if I were to learn that a prescription anti-depressant can reduce or eliminate my propensity to erupt in unjustified anger at the slightest provocation, I may get even more depressed for having waited forty-five years to investigate possible solutions. But that’s not true. I have investigated solutions. I’ve read books on anger management. I’ve tried meditation. I’ve done all sorts of things that can, ostensibly, address anger. Zip. Although, I think I’ve improved dramatically since I retired.

I was never suited for a career so utterly imbued with stress as the one into which I fell. I would have been far better off as an academic or an electrician or an organ-grinder. Those careers, I suspect, have their own unique stresses. I can’t undo what I did for a living and I shouldn’t regret the years I spent doing it. Shouldn’t. It had plenty of upsides. World travel. Lots of discretion over my time (but lots of absurd demands on it, as well). There must have been more. I look back on it, though, and have absolutely no regret that I got out early. Early retirement was, I think, one of the best decisions I’ve made. I’ve been able to spend eight years, up until the very recent past, carefree and relatively healthy, enjoying my free time. Good call, John. Actually, I can’t claim full credit. My wife had a lot to do with it. A lot.

Back to the issue at hand, though. In spite of the potential that I might be forced to kick myself repeatedly for having failed to act earlier, I would be absolutely delighted to learn that my life (but, more importantly, the lives of people with whom I interact) might improve immeasurably if I were to regularly take a simple pill (though I have no idea what pill that might be). And, again, it’s not just the matter of anger. It’s the sadness, the pessimistic sense that there’s no point in trying to change the world, the feeling that my life ultimately just doesn’t matter. Maybe those things contribute to my susceptibility to certain music causing a flood of tears to flow. Or maybe that’s natural, but most men have succeeded in learning to control the spigot.  I would just like to feel generally happy. I do, I suppose, most of the time. But there’s always this underlying sense that it’s temporary, that happiness is an artificial condition we strive to achieve but one that can never envelope us completely for long.

***

I’ve written so little fiction lately that I wonder whether I’ve truly lost interest in it. I haven’t had any real impetus to write fiction for months. Oh, I’ve written a little, but it has been weak and uninspired and generally substandard fare. Maybe fiction isn’t the escape it once was, though I don’t know how to quantify just how much of an escape it was before versus now.  I am not going to berate myself (much) for steering clear of fiction. I have other, more pressing, things on my mind. Like cancer and the potentially long-term side-effects of its treatment.

***

I hear the wind outside my window. It’s fierce. In the pre-dawn darkness that’s just now giving way to dull grey light, I can see the trees sway and bend. Though I haven’t seen them fall, I know the ground beneath the trees is littered with dead branches that weren’t there last night. Occasionally, the noise of the wind changes from a roar to a high-pitched howl. Suddenly, the cacophony morphs into an eerie silence, as if the wind senses that it’s being heard and watched and, in response, it reciprocates by watching and listening. Today’s weather will change drastically as the morning goes by. Forecasts call for a 50 degree drop in temperatures by early tomorrow. The temperature now is 72 degrees. By 11:00 a.m., we’ll see it drop to 50 or below. Steady 10 to 15 mile per hour winds from the west-northwest and northwest will bring colder air with them, so that we experience freezing temperatures by bedtime. In the morning, I can expect to awake to an outdoor temperature of about 22 degrees. Ach. I prefer warmer climes.

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Silence

No matter where I seek it, I cannot find it. Silence. The absence of sound. There was a time when I could find it. But no more. Not since my heartbeat, with its drumbeat in my ears, began interrupting my peace. For months and months, I’ve heard my heart beat. Perhaps it’s a matter of wax in my inner ear transmitting the vibration from each beat of my heart to the tiny bones in my ear that manifest as sound. Or it could be something else. I don’t know. But I do know it is beginning to drive me crazy. It’s on my list of things to address with my primary care doctor when I go in for an appointment in March. If I don’t lose my mind before then. If I don’t stab an ice-pick in each ear before then, trying to put an end to the pounding, pounding, pounding in my ears. I doubt I’ll do that. An ice-pick in my ear sounds painful. On the other hand, the absence of sound “sounds” delightful. Silence. The absence of noise. The absence of sound. The absence of aural interruption.

The constancy of noise is not new. I’ve noticed it for months, if not years. I’ve wished I could flip a switch to turn off the sound of my heartbeat, my breathing, the sounds made by my body when I move my neck. I detect noise even when I blink. My upper eyelids slam against their lower counterparts, creating tiny explosions of noise that I feel and hear. I wonder whether I am alone in noticing the cacophony or whether others, like me, are embarrassed and afraid to admit to hearing those noises because…we might be judged out of our minds. I suppose we are. I suppose we are dangers to ourselves, what with talk of stabbing ice-picks in our ears to silence to sounds of our heartbeats. Only madness can prompt such thoughts. Or, perhaps, incessant noise.

Silence would be frightening now, I think. It would seem utterly at odds with normalcy. Silence, now, would seem sinister, as if all the attention of the world were directed at me, with no distractions. Maybe noise is like a protective blanket made of horsehair. It keeps us warm but, at the same time, it irritates the skin with a painful, ever-present reminder that warmth comes with a price.

On the one hand, sound is precious. I wrote recently about the sound a guitarist’s fingers scraping against the strings makes. But even that sound, if ever-present, can be maddening. Sound needs its absence, if sound is to be valuable and beautiful. If sound is ever-present, it becomes a fiendish enemy bent on driving molten spikes into one’s brain. And, then, when the spikes quench in cold water, the sound of  steam and boiling water give way to the cracks of shrinking metal and, finally, silence. Silence. Beautiful silence.

Quiet is serene. Quiet is calm. Quiet is relaxing. Yet quiet is impossible to find. It escapes into the loud screeches of huge black birds and the rumble of trucks rolling up and down the street outside my window. It disappears into the thump-thump-thump of my heartbeat. It withdraws into the hum of refrigerators and computers and the buzz in my ears that sounds like layer upon layer of the noises made by crickets. Silence is imaginary. Quiet is a supernatural tale, just a fable with no basis in reality. Silence doesn’t exist.

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Cancer Mythology

I’ve slept more in the past week, I think, than I usually sleep in the course of a month. That may be an exaggeration, but not much. I am in bed by 8 or 9 in the evening, up around 4 or 5, and sleeping in my chair before sunrise. It’s now almost 11:30 in the morning and I’ve just now awakened again. I  haven’t been asleep every minute since sunrise. But most of them. I was awake long enough to drink bottle of Ensure and take my medications. But just barely. I loathe this sense of absolute weariness. It’s as if I am wearing out like a pair of ancient shoes, their leather so thin that a slight motion in the wrong direction will rip the leather into shreds so delicate that nails can’t bind them to the soles. I feel so tired that I must have been forced to stay awake for a month but I know that’s not true. I should feel utterly rested after all the sleep I’ve had. But I don’t.

The pain in my chest, caused by my burned esophagus, doesn’t seem to be getting any better. Instead, it seems to be spreading and going deeper, like my heart is in the grip of a vice that squeezes with each move I make. I spoke to my doctor’s nurse a while ago. She advised me to continue taking the drugs intended to address the pain and to come in half an hour early on Thursday, before the scheduled radiation treatment, for an assessment. Perhaps the pain will have disappeared, or become more tolerable, by then. Perhaps all will be well.

I am not comfortable with pain. I’ve always said I have an allergy to it; half joking, half serious. Some people can tolerate pain; some can’t. I can tolerate it, but only during the course of complaining bitterly about it and behaving as if the pain is attempting to kill me. I suppose I dramatize pain. But  try not to. I try to cope with it and accept that it is what it is. That rarely works. I whimper, silently or not so silently, wishing and hoping the pain will take pity on me and will leave me alone. It rarely does. I can’t imagine how I would react to excruciating pain. I might tear my eyes from their sockets in an effort to distract myself from the agony. I realize that sort of behavior flies in the face of reason, but I am nothing if not reasonable. See, the pain drives me to distraction. I try to laugh but cough convulsively instead.

Today is, as best as I can tell, a gorgeous day. Blue skies, painted with a few white clouds, invite people outside to enjoy the warm weather. The temperature has reached almost 70 degrees. It’s the sort of day that healthy people rush outdoors to enjoy. But I remain indoors, warming myself in a t-shirt and sweatshirt because I feel a little too cold. I wish I were outdoors, sitting in the sun, enjoying the heat and the fresh air. But I’m not. I’m inside, shivering on occasion and angry at the universe for treating me the way it’s treating me today. Bastard!

My sense of humor is attempting to break out of the hard, cast-iron shell wrapped around my body, but it’s having a hard time of it. Why is that, I wonder? Could it be that my sense of humor is reacting badly to the multiple wounds on my chest and back and side? Could it be that laughter is cursing loudly, pointing at evidence of drunken scalpels behaving badly after a night directed to do bad things by wayward anesthesia drugs?

I think I need to go back to sleep. But I’d like to eat, instead. I miss foods that I dare not eat for fear of making my esophageal pain worse: jalapeños, Tabasco sauce, salt, and lemon juice. Instead, I am relegated to drinking 350-calorie food-substitutes, slurries that ostensibly will keep me from losing weight. They (to doctors and nurses who occasionally look out after me) want me to drink six of them per day. There is no way in hell I’m going to drink six bottles of Ensure in a single day. I might go for three. And, if I do, I will agree to cap them off with a half gallon of orange sherbet every couple of days. They want calories, I’ll give them calories.

I’d like to have a shower servant today, someone to gently scrub my skin, just hard enough to remove the remnants of the lotion I’m required to use to battle the “sun burn” I’m getting from the radiation treatments. After my cleansing, I’d like my shower servant to give me a pedicure and, once I’m clean and dry, to rub healing lotion on my back and chest. Then, a wash of healing skin-cream all over my arms and legs would be nice to help ward off the dryness that seems to be getting more and more pronounced. After I’m dressed in a soft robe, a nice glass of red wine would be nice. I am, begrudgingly, permitted one glass of wine per week. Yesterday would have been one week since my last very small glass of wine. My wife won out, though, by telling me I should wait for wine until some unspecified time in the future.  Yes, I should wait until I’m older, that’s it. I don’t believe for a moment that a glass of wine each and every night would be problematic for me. I think the doctors demand wine be eliminated only because they can get away with it. Perhaps they are in favor of prohibition. Or, worse yet, they secretly admire Donald Trump and his lifestyle. If that, they deserve to be impaled on a spike in his bollard wall. I wonder whether my contemplation of wine is making me into an aggressive drunk? That would be an interesting research project, wouldn’t it? “An Investigation into the Physiological Changes Wrought on the Nervous System by Contemplating the Consumption of Alcohol.” The Blue Laws would have to be revised to prohibit even thinking about buying alcohol on Sundays.

I guess I’ve successfully stayed awake for most, if not all, of the time required to write this incoherent screed. I’ll assume the content of what I’ve written can be attributed to some odd form of cancer mythology. Another possible thesis for one of my many master’s degrees.

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Street Scene

Whispers. Strained voices. Anxious sighs. Stifled sobs. The sharp staccato raps of heels pounding on the cobblestone street, their echoes remaining long after the tear-drenched woman rounds the corner. Long after the dejected man shuffles away.

Who were they, that couple whose urgent matters spilled into the street and captured the ears of people sitting in cafés, leaning against balcony railings, and watching from the dark shadows beneath the clock tower? What private pain burst into such a public display of heartbreak, such a ruinous end to what might have been a lifetime of joy?

Every couple sitting in those cafés heard the message that their time, too, could come. The women leaning against the balconies sensed it, as well. And the people beneath the clock tower cringed at the evidence that their own lives could shatter against the hard cobblestones.

All of them listening to the couple’s dissolution were strangers with no bonds between them but in those moments, in that street scene, they felt their lives bound together with steel cables. They heard the sounds of their own hearbeats slamming their dreams against the walls of their chests and they felt the inexorable sense of loss that never departs.

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Cancer Journal 23, 2019

It’s Sunday morning. I slept/dozed most of the day yesterday, waking occasionally long enough to eat a bit or listen to the radio. Janine drove in to Benton to do some shopping while I rested. Rested isn’t the right word; I collapsed, that’s what I did. Even though I dozed most of the day, I still wasn’t able to stay awake long after she got home. We had an early dinner, after which I went through my post-meal medication routine and then took a shower and went to bed. I awoke before 2:00 a.m., feeling like I’d slept far too long; my bones ached the way they do after spending far too long in bed (though much of my day wasn’t in bed but, instead, in a recliner). But, I tried to sleep anyway. I finally got up around 4:30.

I attribute yesterday’s monstrous dose of fatigue to Monday’s chemo; I don’t know what else to blame. I hope one day will do it. We have dinner plans tonight with neighbors, so I really don’t want to deal with another day of fatigue and painful swallowing again. I didn’t experience too much pain with swallowing yesterday, at least not all day long. But late in the day the pain was back with a vengeance. I’m tempted to try my medication routine without eating first, but I’m not sure whether that would be a wise move, so I guess I’ll try to follow the instructions. Damn. Damn. Damn.

I wonder whether the chemo and radiation are doing more harm than good? Some of the side-effects of the two treatments can be permanent, according to the literature. Permanent side-effects are “rare,” but not unheard of. I considered, seriously, not having any treatment other than surgery. That might have been the best option. Surgery was bad enough, but I think its effects have been exacerbated by five-days-a-week radiation treatment and the injection of cell-killing drugs into my bloodstream.  I have a fear that I’ll find myself so badly incapacitated by my treatments that I’ll be unable to act for myself. Being locked in a body that won’t function the way it was intended is a terrifying thought. I’m not Stephen Hawking; I am not suited to living only through my brain.

Until just now, it hadn’t occurred to me that the temporary pause in my radiation treatments has given me an opportunity I haven’t had for several weeks. I could take a day-trip (or two) during the week. I am not restricted by visits to the doctor’s office until Thursday. If I can persuade Janine, I might get out of town for a day or two. That would be a welcome respite from being tied down to the house and my surroundings. The key, of course, is whether my fatigue and trouble swallowing will just cooperate by remaining at bay for a short while. I’ll explore that tomorrow. Maybe. If I can cope with rain showers and daytime high temperatures around 70, I should be fine. And I think I should be fine.

 

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