11 May, 2020

Perspective

It's been nearly two months since I checked into the hospital, and though I've thankfully been able to spend recuperation time at home for the last four weeks, it's been a constant struggle, with home health nurses and nurse practitioners coming thrice each week, having to infuse antibiotics for over an hour every eight hours (and having to prepare 45 minutes in advance for each infusion, meaning I could only get five hours of uninterrupted sleep each night), and the constant reminder of tubes coming out of my body, with staples and stitches in various places.

So it was with great pleasure when I learned that my peripherally inserted central catheter would be removed. I dreamed of finally being able to take showers again (though, as it turns out, continuing to have a nephrostomy tube means that dream hasn't quite matured yet), and the thought of being able to roll over onto my right side at night made me downright giddy. And, if that were not enough to celebrate, I'd finally be able to remove those sutures!

Ah, but the plague that comes in the form of these mysterious sutures has driven me mad for over a month. Supposedly, you only have to cut under a knot and then pull, and they'll come right out. But first one nurse, then two, then a nurse practitioner all claimed to be unable to get it out. They didn't want to pull too hard. They couldn't see the suture properly. They were afraid that my skin had grown over it. The excuses seemed to have no end. So, for the first time since I left the hospital, I traveled to a doctor's office for the sole purpose of removing a single stitch.

This was the surgeon who put in my chest tube in the first place. It was another who stitched me up afterward. I felt so bad for wasting his time when supposedly a nurse was intended to do it. He asked: "They didn't want to pull too hard? Does it hurt?" I said no, so he pulled out a pair of tweezers, grasped the end of the string, and before a single second had passed, my suture was out. "What was wrong with those nurses," he sighed idly.

But it was what happened before this that really caught my attention.

I could hear, through the door, as he took a phone call. It was another doctor, asking for a consult. He was already familiar with the patient: positive for COVID-19, older, currently intubated, but stable. There's a good chance that they could recover -- except when they took an x-ray before removing the intubation tube, the metal object that they had seen previously had moved. "We assumed it was shrapnel embedded in tissue; but now it seems to be loose. If we remove the intubation tube, it could cause severe damage." A slight pause allowed me to hear my heartbeat ever so much more loudly.

"You'll need to inflate the tube slightly, then take it out. We have to just hope for the best."

"But that's too dangerous; couldn't we --"

"We could, but it would be --"

"I know, I know; that would be heroic --"

"No, suicidal. There's not enough capacity with COVID-19. You're thinking he could get better, and yes, he could, but he is DNI/DNR. It would be different if he had long healthy years ahead of him, but he's coming off the intubation so that he can talk to family."

"I can't…"

"Get them to do it. … I'm sorry. I really am very sorry."

"I know."

There's another pause after the phone is hung up. In a few moments, he will enter the patient room I am sitting in, and we will both pretend he didn't just have this conversation. But just then, in that moment, I recognize just how lucky I am.

06 April, 2020

What Star Trek Means to Me

Some of my favorite memories of my mother are of when we'd sit on the couch together watching Star Trek: The Next Generation. I don't generally have a good relationship with my mother. The last time I saw her, she called the police to kick me out of the house, even though we had already previously planned for me to leave the next day. The officer drew a gun on me, nearly shooting me because I didn't know enough not to reach for my shoes before walking outside. (Had my skin been a bit darker, I wonder if I might have died that night.) I ended up having to leave half of my possessions there because I had yet to pack them. Today, when I watch TNG, I remember the better moments; mother and I curled up in blankets, patient with the commercials and engrossed in the story.

Star Trek: Voyager aired just as my life collapsed for the first time. I had been young, thinking my life was destined for great things, when everything stopped as my girlfriend became pregnant. I didn't know how to proceed. We tried to get an abortion; but I lived in Alabama, and the nearest place to do so was in Atlanta, which wouldn't help us. She thought to leave the state, give birth, and then put the child up for adoption, but I felt this was too burdensome for her. We were out of options. I knew nothing to get us out of this. That's when my family suggested that I marry her. I took the suggestion seriously, bought a ring, and asked her to marry me soon after. I dropped out of school, married soon after my 15th birthday, enrolled in college, and tried to make the best of it. I failed. I was too immature for college, dropping out less than a semester later. I was too immature for parenthood, failing to properly care for the infant, doing little better than the motions required to keep her alive. I was too immature for matrimony, putting the majority of the responsibility on my then wife, and relegating my own time to mostly feeling sorry for myself. I remember thinking: This cannot go on. Something must happen that will change this situation. But I was too "honorable" to end the relationship, and too stupid to change my behavior to make it work better. Thankfully, my partner at the time was extremely intelligent and insightful; she was able to see that nothing was working and that life would be better for all three of us if she left. So, in the middle of the night, she did. I was distraught at the time, not realizing the gift she had given all three of us. The narrative of our lives had changed so drastically, but all I could do was wallow. This took the form of watching VHS videos of the first few seasons of Voyager at a friend's house. They left the door open for me. I'd walk inside, put on VOY, and veg out through entire seasons as numerous cats surrounded me. It was all that I could do to get a semblance of reality back into my life.

I had watched DS9 and ENT on my own, without any significant life events occurring at the time. They helped me to enjoy the time. But it wasn't until decades later that I first properly watched the series as a whole. Star Trek: Discovery had been announced, though we didn't know the title yet at te time, and I decided to watch all of Star Trek. It took months. I started with TOS, moved to TAS, then all the original movies, followed by a rewatch of all of TNG. To say that this made me emotional is an understatement. I watched DS9, VOY, and ENT, and then all the TNG movies. By the end, I felt ready for whatever came next. I was working 20 hour weeks throughout this time, allowing me a great deal of time to really consume so much Trek.

DIS was watched with my partner, Katherine, as it aired. It reminded me of curling up on the couch with my mother back when I was a child. DIS was filled with a sense of wonder, but also of familial love for me. I felt loved. I felt secure. I felt happy.

PIC aired as I was sick in the hospital. I would have surgery, then lay helpless in bed for days, only to later realize that the latest episode had aired. I'd wait until 3 am so that the internet wouldn't be as spotty, and then attempt to stream PIC as I lay somewhat in pain. It was a transformative experience.

Other sci-fi series are better, in terms of writing, suspense, etc. Babylon 5 back in the day; the Expanse more recently. But Star Trek still occupies an important space in my heart, giving optimism when it is needed most, and connecting back to a history of my life that I never want to forget.

Thank you, Star Trek, for being such an integral part of my life over the decades.

29 March, 2020

in hospitium

I've been in the hospital now for nearly two weeks. I've had four surgeries, several operations, and way too much bedrest. I don't have COVID-19, but its existence affects me greatly; I'm not allowed to have any visitors, I have to take several precautions so that the coronavirus patients upstairs don't infect me, and I can't look at any media at all without constantly seeing the depressing state of things just outside my hospital room window.

I have a tube from inside my kidney draining outside. I have another draining the dregs from an abscess on the same. I have a chest tube connecting the inside of my chest cavity (next to my lung) to a machine outside my body. I have a pic line in my arm that is threaded through to the base of my neck. I even have a foley catheter. Getting around is extraordinarily difficult due to the plethora of tubes and connected devices and bags, though otherwise I still have enough energy and strength in my legs and arms to move about as much as I would want.

I'm grateful to have a laptop available, alongside a fan that helps keep me cool. I truly appreciate the immensely comfortable purple cushion that's on the chair in my room. I love my Nintendo Switch, alongside the relaxing Animal Crossing, which has dominated my playtime. I adore the posters Katherine drew for the cabinet in front of me; they show Jasper, my feline housemate, telling me to get better in various ways. I even feel good about the two stuffed animals I have here: a large Fluttershy and a slightly smaller Kapp'n.

What I'm not as happy about is how long it may take for me to get out of this. No one is sure how much longer I will have to have the JP and chest tubes, but eventually they must be removed. Once that happens, I can go home (finally!), but I will still have the other tubes and will need to inject antibiotics for six weeks or so. Afterward, I need to come back into the hospital for yet another surgical procedure, followed by the removal of the rest of my tubes. At that point, they check on me, and it has to be determined whether I will need a kidney removed entirely.

I have never before experienced the levels of pain, discomfort, boredom, inability to think straight, etc., in all of my life. I will forever better appreciate the benefits of health, mobility, and capacity for rational thought.

18 March, 2020

Illness in Quarantine

I'm probably not dying, but I feel horrible.

The COVID-19 quarantine has made the local clinics too iffy to go to. My condition would need to worsen first, I think, before I risked a visit for this illness.

Yet it is so miserable. Near constant pain the temples, continuous overheating of my face and forehead (yet my internal temperature rules out a fever), and an abdominal issue that defies my understanding.

There is a dull ache, not quite pain, but more like discomfort, localized on the far left of my abdomen. It is somewhat low down, and it is situated well beneath the skin, so I can only point to its location. If I contort my torso in different ways, it can hurt, like a very small cramp. But otherwise it just exists. Combined with this, I feel no appetite. Eating foods of any kind doesn't really appeal to me. It's been this way for several days. This means I am now hungry, wanting nutrients, but with no appetite whatsoever. I don't know how to respond to such problems. My current plan is to call a professional to determine whether I need to risk going to a clinic.

If feels serious enough that I've typed out a last will and testament on the desktop of my laptop. But at the same time, it feels so silly to worry about dying that I feel embarrassed about writing out this blog post. Damn silliness heuristic. I honestly can't do any serious rational thought right now with this amount of pain in my head. I need to take additional pain-killers.



==========
Edit on March 20:
It turns out that I had a lot wrong with me.Two surgeries down so far, at least one but more to be scheduled in coming weeks. I will explain more in depth later, but suffice to say that this is, bar none, the most painful and life-altering experience in my entire life.

27 February, 2020

Review: Unsong

UnsongUnsong by Scott Alexander

My rating: 5 of 5 stars


Imagine that Judaism is actually true, and this becomes glaringly obvious when the Apollo mission bumps into the firmament and miracles start happening across the world.

Author Scott Alexander takes us on a wild ride in this alternate-history-esque story, filled with puns galore and references to all the kinds of things that people in the effective altruism and/or rationality space care about. While the story is not an example of rationalist fiction, people who like rational fiction will probably really like this novel.

Some of the revelations in the book are especially excellent, and the philosophical positions portrayed as truth in this world make for excellent world-building. Without spoiling anything, the position taken on the problem of evil is exceedingly close to my actual favorite response IRL (minus p-zombies for fairness reasons); and the various descriptions of what the cognates of our real-world people are in this fictional universe is beyond compelling.

The book doesn't take itself too seriously, preferring to set up puns constantly, but while that would be annoying in other books because other authors would be sacrificing the story to make those puns, Alexander actually weaves these puns as actual story points. Kabbalah is real here, so knowing how to make links between things by using their names and connections to other things is a real part of this book's world. Chapters that at first may seem to only be written for the sake of a pun are thus revealed to be information that legitimately propels the story forward. I've never read another book that did such a good job with this.

I recommend this book to anyone who pattern matches to any two of the following:
you like puns;
you're fascinated by sephirot/kabbalah/jewish mysticism;
you like rational fantasy, but are okay with reading something rational-adjacent;
you are interested in fiction that has effective altruism as a plot device; or
you already read Scott Alexander's excellent fiction and/or non-fiction.

A word of warning: Alexander has written some great nonfiction short stories, and while none of them are a part of this book, it would be better to read Unsong first, and only then read his short fiction. Usually when I'm recommending a new author to someone, I tell them to read a short story first to see if they like the author's style, but Alexander has a tendency to re-use great ideas. So things that should come as big surprises at various points in Unsong will be spoiled if you read his other fiction (and sometimes even his nonfiction!), some of which have the same surprise as their climax. So if you are new to this author, read Unsong first. Then you can look at his other works, almost all of which I'd consider excellent as well.



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