Part one, part two.

TW: back tubes and bags attached

My mindset the night of February 7 was pretty good. There was little pain. I knew I wasn’t going to get much sleep because the nurses would be checking in constantly. I got lucky and got a private room. I was disappointed the procedure didn’t work but, you know, things happen. I was bored but able to doze on and off and so made it through the night.

Nurse Manny, I liked. He attached some air compression leggings to my calfs that massaged my legs through the night. (These wrapped around each leg, from knee to foot. Each was attached to a machine that forced air into one, let it out and then forced air into another, alternating between legs to give each an air pressure squeeze. They are sold commercially as air compression leg massagers.) He helped me walk around the room when I couldn’t tolerate lying on my back any more and just generally had good vibes.

Nurse Mary was weird and alarming. She came across as way too hyper and happy. I immediately didn’t trust her. She was awkward interpersonally and out of nowhere wanted to shake my hand. It was weird.

She also broke the news to be that I’d be living with a nephrostomy bag until the next procedure. This was unexpected and a little hard to hear. I was not emotionally prepared.

My urologist, it turns out, is the cautious sort. Not every doctor in this situation would recommend living with a nephrostomy bag but given all the possible scenarios we might face moving forward, it was his preferred method of treatment.

A nephrostomy bag attaches to a nephrostomy tube. The nephrostomy tube is a tiny tube with one end in the kidney and the other end hanging out of the body. In my case, hanging out of my back. The bag attaches and fills with urine, fresh and direct from the kidney.

Nurse Mary was bossing around Nurse Cindy as she prepared to teach me how to care for the bandage that covered place where the nephrostomy tube entered my back, and how to care for my bag. Before she taught me these things she taught Nurse Cindy these things while also rattling off a long list of stuff Nurse Cindy needed to go fetch for me to take home.

I’m going to highlight this part of the conversation I overheard because it will be important later.

“What’s this?” Nurse Mary asked Nurse Cindy. They were looking at my back and I couldn’t tell what they were talking about. I was still wrapping my head around what it would mean to live with a bag attached to my body.

“I don’t know.”

“Did you put it on?”

“No. It was like that.”

“Well, take it off. It’s redundant. We don’t need it. See (and she fiddles with something I can’t see) you can just twist this instead.”

“OK.” Nurse Cindy leaves the room to retrieve all the bandages and stuff Nurse Mary directed her to collect for me to take home.

Nurse Mary looks at me slightly exasperated. “I was going to show her how to flush the tube,” and she shakes her head slightly, still grinning like a goon.

-Then you should have told her that instead of expecting her to read your mind, I thought.

Nurse Mary then explained to me how to detach the bag. There was a stopcock I’d turn to stop the flow of urine from my kidney to the bag. To flush the tube, I’d attach this special syringe I could screw onto the tube, and push in the pre-filled liquid into the tube, thereby clearing the tube. I might need to do this a couple of times a week. Then, I’d reverse — remove the syringe, attach the bag, and turn the stopcock so the fluid could flow.

She also showed me how to change the bandage, information I’d convey to J.

Eventually they determined everything was flowing the way it was supposed to. There was still a lot of blood in my urine (or, it seemed like a lot, but, as the emergency room nurse would tell me in a few days, blood is like food dye, it only takes a few drops to make everything reddish). The fluid in my bag was the color of a Jolly Rancher watermelon candy.

I got dressed in the gray sweats and hoodie I wore to the hospital, and carried out clear plastic bag full of syringes, gauze bandage packages, a urine collector/container (for unexplained reasons), my spirometer (a tube to breathe into to promote breathing and diminish the likelihood of pneumonia), and holding onto my nephrostomy bag. They loaded me into a wheelchair and escorted me to the waiting room where I waited for my prescriptions (oxycodone and stool softener) and for J to arrive to take me away.

to be continued…

TW: hospital, medical procedure

After learning about my stone I made an appointment with a urologist to discuss my options. He suggested a percutaneous nephrolithotomy as the procedure with the highest possible success rate for the large non-obstrutive stone in my kidney.

This means approaching the stone through a tiny incision in my back. Additionally a tube is inserted through the urethra, bladder and ureter into the kidneys to allow fluoroscopic guidance (i.e. the ability to introduce a contrast agent to allow better visualization when using bursts of x-ray to see what’s going on inside me in real time). I agreed to the procedure and we set a date.

On Wednesday, February 7, 2024 I awoke early and showered. After drying I wiped my body with some anti-bacterial wipes provided by the hospital, dressed in comfy clothes, and headed off, nervous but ready to get this over with.

Let me pause a moment to acknowledge my extraordinary privilege. I’m exceedingly lucky to have an awesome partner helping me with all this. J drove me to the hospital, hung out as I got settled into the pre-op gurney, and was there to provide whatever help I needed. Throughout all of this process I have been profoundly conscious of how lucky I am and what extraordinary privilege I have to be able to do this. I’m a mid-career professional with solid health benefits and the economic means to cover what my insurance does not. It’s a fucked-up world that restricts those not as lucky as I am to access to the kind of health care I received.

Eventually I was settled in, J left to get to work, and I alternated between dozing and working on my mindfulness meditation. While curtains kept me from seeing the others who were also in gurneys and also awaiting surgery, there was plenty to eavesdrop on.

One male Indian nurse was called aside by the head nurse and told he’d been taken off a patient. He was defensive and upset and the head nurse trotted out some balderdash about how some older women in the south expect to be called ma’am. What she didn’t say, but I think the talk might have gone better if she had, was — look, this racist lady doesn’t like your accent and complained. Let’s move on. But, instead of calling out the racist old lady, the Indian nurse kept getting signals that he was somehow doing something wrong, but without any clear direction on how to do things differently.

I recited my birthday a hundred different times for various doctors and nurses and eventually they switched on the anathestic and I slipped into a narcotic slumber.

I came to in the post-op holding room, a room of unknown dimension that held an unknown (to me) number of gurneys laden with folks coming out of surgeries of their own.

Apparently I had just missed the doctor but J was there and conveyed the news.

The procedure was called off before it could be completed. The stone remained untouched. It turns out I have an abnormally narrow ureter and in the process the lining was nicked slightly. To avoid causing any further damage the surgeon canceled the procedure and made the decision to try again at a later date with a slightly different strategy.

Next: Bag Life

to be continued…

Despite the quantity of titles published, Gothic novels of 1790-1820 era are scarce. Valancourt Books is currently the best go-to for this particular niche.

In addition to publishing the list of “horrid novels” mentioned by Jane Austen in Northanger Abbey, they also publish a representative list of Minerva Press titles (I count twenty-two).

Valancourt’s whole catalog is worth checking out if you’re interested in the following:

• Gothic & Romantic
• Victorian & Edwardian
• Literary Fiction
• Vintage Thrills and Chills
• Horror & Science Fiction
• Rediscovered LGBT Literature

Arno Press went through a phase of publishing novels from this original Gothic (OG!) era in the 1970s. These were published for the library market and many are still available through interlibrary loan. On the open market, though, they can get kind of pricey.

Broadview Press is another strong contemporary source for some of the early Gothics. (Though these can be pricey.)

My current less-than-methodical pursuit has me reading a 1970s paperback with the traditional lady fleeing the spooky house cover written by Gil Brewer. Brewer interests me because he was a local writer and much of the crime fiction he wrote under his real name takes place in the Tampa/St. Pete/Clearwater metropolitan area. Some of his crime fiction work is quite good.

He wrote some Gothics in the early 1970s under the pseudonym Elaine Evans.

“The mansion had been built more than a hundred years ago by Brady Holloway, who had made his fortune in Pennsylvania before moving to the Louisiana bayou country. Brady was known as a demon, and his rages were infamous throughout the countryside. When he fell in love with the beautiful Charlene, some hoped that he would settle down. But instead his raging way of life continued — until Charlene was found brutally murdered. Shocked, Brady Holloway converted his entire fortune –$750,000 — into gold, and disappeared from the world. Now, more than a hundred years later, another beautiful young woman was coming to the mansion renamed Malpoindre — Evil Dawn — after Charlene’s murder. Would Kirsten Holloway, too, meet her doom on these haunted grounds?”

I just finished a scholarly work about the Gothic paperbacks of the 1960s/1970s. It wasn’t that great. The next on my TBR pile will take me back to Walpolian England. And after Black Autumn I’ll probably turn to The Graveyard School.

“The poetry of the Graveyard School—gloomy meditations on mortality, often composed in churchyards—was immensely popular in 18th-century England and was an important forerunner of the Romantic period and a major influence on the development of the Gothic novel. Yet, despite the unquestioned significance of the Graveyard Poets, critical attention has been scant, and until now there has been no anthology of their writings.”

This post should come much later in the story but since it’s currently on my mind I’ll post about it now.

Thich Nhat Hanh has a translation of The Five Remembrances I like.

I am of the nature to grow old.
There is no way to escape growing old.
I am of the nature to have ill-health.
There is no way to escape having ill-health.
I am of the nature to die.
There is no way to escape death.
All that is dear to me and everyone I love are of the nature to
change. There is no way to escape being separated from them.
My actions are my only true belongings.
I cannot escape the consequences of my actions.
My actions are the ground on which I stand.

I find it comforting to remind myself that I will change. I will age. I will have issues with my health. I will be separated from those I love. And someday I will die. The Five Remembrances reads pretty goth. All about death and loss and separation, but Hanh adds a gloss that makes the sutra much more meaningful to me.

In the version I have Hanh qualifies his translation with the comment —

“If we look at the Five Remembrances only as ominous warnings of what is to come, they will serve only to create more suffering. Our practice is to smile to them, to look deeply and shine the light of mindfulness in order to transform our fear of old age, sickness, death, being separated from people and things we love, and to see the nature of our actions.”

Understanding Our Mind by Thich Nhat Hanh · 2008

Finding a way to accept inevitable change with grace, humility, and humor has become an important part of my search for middle-aged well-being.

After Back Collapse 2023 my stool changed dramatically. I went to a doctor to try and figure out what might be going on, and in the process I got a CT scan of my gut. Completely unrelated to any issues I was experiencing I discovered I have a large nonobstructive kidney stone.

I’ve learned that so much of health care is really playing the odds. It’s possible a stone like that would never grow, stay where it was, and I could live out my life without it having the slightest impact. It’s also possible that down the road it could do something that caused great pain, damaged my kidney, sent me to the emergency room, or otherwise make my life considerably worse.

I decided to get it removed.

To be continued…

“The lower part of the castle was hollowed into several intricate cloisters; and it was not easy for one under so much anxiety to find the door that opened into the cavern. An awful silence reigned throughout those subterraneous regions, except now and then some blasts of wind that shook the doors she had passed, and which, grating on the rusty hinges, were re-echoed through that long labyrinth of darkness. Every murmur struck her with new terror[.]”

Castle of Otranto

The first few days of Back Collapse 2023 were some of the most painful I’ve ever experienced. Moving was stiff and slow as I tried to negotiate moving my body without in any way bending my lower back. Here are a few things I learned during that period

• moving the lower back is an essential part of adjusting oneself in bed, from moving hips to rolling over,
• the internet makes every ailment feel like imminent death or at least cancer,
• between 70-80% of the adult US population will experience chronic back pain at some point in their life,
• typically “throwing out one’s back” will respond to heat/ice and rest and a visit to the physician isn’t strictly necessary the first few days,
• in my case I should have started icing earlier. I used heat because it felt like muscles were tightening up, but the ice was more helpful because there was inflammation and swelling,

After three days I could move enough I could have gone back to work on Thursday, but since we are on 4-day work weeks over the summer I stayed home on Thursday. By the following Monday I’d regained nearly all of my range of motion, though I still felt a little tender.

After a month I was back to my old self.

Except.

Hmmm, how to put this delicately…

My stool was not normal.

The first few days after my back collapsed I was wary about what I ate. Getting to and from the toilet was a major ordeal. Sitting was rife with challenges. For the first few days I did not want to move my bowels.

When I was eventually OK with sitting and shitting I noticed my stool was soft, sometimes watery. Shock to the system, I thought. It’ll pass.

Still the same symptom after a month.

After six weeks I made an appointment with a doctor to figure out what might be going on with my digestive system.

Ugh, doctors. Perhaps that needs an entry of its own.

(to be continued…)

My body is more deteriorating gothic ruin than tidy and burnished temple. I have arrived at a time in my life when my body is alerting me that it is the nature of my body to grow old, and to decline.

In Mysteries of Udolpho, Emily is initially excited at the prospects of visiting the Castle Udolpho. As she gets to know the owner better, she becomes more apprehensive. The first time she sees the castle she notes “its mouldering walls of dark grey stone, rendered it a gloomy and sublime object.” Soon after arriving Montoni has this conversation with the servant left to oversee the castle’s upkeep.

“Well, how have you gone on in the castle, since I left it?” said Montoni.

“Why much as usual, Signor, only it wants a good deal of repairing. There is the north tower—some of the battlements have tumbled down, and had liked one day to have knocked my poor wife (God rest her soul!) on the head. Your Excellenza must know—”

“Well, but the repairs,” interrupted Montoni.

“Aye, the repairs,” said Carlo: “a part of the roof of the great hall has fallen in, and all the winds from the mountains rushed through it last winter, and whistled through the whole castle so, that there was no keeping one’s self warm, be where one would. There, my wife and I used to sit shivering over a great fire in one corner of the little hall, ready to die with cold, and—”

“But there are no more repairs wanted,” said Montoni, impatiently.

“O Lord! Your Excellenza, yes—the wall of the rampart has tumbled down in three places; then, the stairs, that lead to the west gallery, have been a long time so bad, that it is dangerous to go up them; and the passage leading to the great oak chamber, that overhangs the north rampart—one night last winter I ventured to go there by myself, and your Excellenza—”

I am my own crumbling ruin.

It was a great day. Jennifer and I were cracking each other up, really enjoying each other’s company. We were driving home from Sanibel Island, taking the “scenic” route, the slow route I prefer to the interstate. I was feeling deep, sincere gratitude for what I had, a real appreciation for the life I’d managed to somehow stumble into. It was Sunday, July 31, 2023.

At home, I had only a few chores to complete to be ready for work on Monday. I plopped some clothes into the washer (another thing to be grateful for, I reflected. Once upon a time I’d be schlepping all this stuff to some nearby laundromat). I laid on the couch and read some. Maybe snoozed a little. When I stood up my back felt a little tight and thought I’d do some yoga in a little bit (another thing to be grateful for, I’d managed to find my way to a healthy place, better food, regular exercise, visits to the physician, therapy, lost thirty pounds last year. Once upon a time I’d eat a large bag of cheetos for dinner and wash it down with a six-pack. Now, I ate fruit for dessert and my diet overflowed with vegetables).

As I bent to pull the clothes out of the washer the tightening in my back quickened.

This is escalating quickly, I thought.

I pulled some clothes from the washer and as I stood to put them into the dryer stacked on top my back locked. To move was to conjure pain.

I shuffled into Jennifer’s office.

“Here’s a curious development. My back’s gone out. I can barely move. Can you help me lie down on the floor?”

(to be continued…)

Off-topic but Mandy Brown’s Unified Theory of Fucks resonates.

Read the whole thing here.

“This is one of my answers to the question of, why give a fuck about work? Why love your work? It won’t, of course, love you back. It can’t. Work isn’t a thing that can love. It isn’t alive, it isn’t and won’t ever be living. And my answer is: don’t. Don’t give a fuck about your work. Give all your fucks to the living. Give a fuck about the people you work with, and the people who receive your work—the people who use the tools and products and systems or, more often than not, are used by them. Give a fuck about the land and the sea, all the living things that are used or used up by the work, that are abandoned or displaced by it, or—if we’re lucky, if we’re persistent and brave and willing—are cared for through the work. Give a fuck about yourself, about your own wild and tender spirit, about your peace and especially about your art. Give every last fuck you have to living things with beating hearts and breathing lungs and open eyes, with chloroplasts and mycelia and water-seeking roots, with wings and hands and leaves. Give like every fuck might be your last.”