The Home I will Likely Never Build: the North Side

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I know I told you last time that I couldn’t wait to tell you about what is downstairs, but I want to take a brief side trip first. We came in through the garden on the south side of the house (there’s probably a small cemetery tucked behind some trees; that’s where you’ll find me soon enough), and I’ve shown you how a home built of earth embraces the sun.

This is at its very core a home that celebrates craft, and the hands that built it. The first thing you saw on your visit was ironwork made by a human being. The signs of humanity are all around you now, and everywhere, if you look closely, you will see the personal marks of the people who built this home, whether by stacking adobe bricks or programming the elevator. The tiles in the bathrooms reflect the minds of the people who created them.

I hope, of course, that this will inspire the residents of the home to create their own art. This home is inspirational, or at least aspires to be. On the north side of the home is the less glamorous, less cozy space where actual magic happens.

I imagine it is a large space, perhaps physically separated from the main building. The floor is open and the light is from the north, coming in through large windows that can be blacked when necessary.

This might be the first structure built, to provide the space and means for the artisans and craftspeople to build the main home.

It smells like clay in here, like paint, like sawdust. The kiln, in its corner, is perhaps the only tool with a fixed location. One day the wood shop might be deployed, the tools needed for that day rolled out and carefully leveled, while on other days it might be the potters wheel or the bench for the glass blowers.

OK, the kiln, the glass furnace, and the forge for iron work are probably all fixed. But on any particular Tuesday this might be a photo studio, or a robotics lab. I delight in the fantasy that we, the residents of this home, will ultimately decide that we need two studio spaces.

There is also, on this side of the house, a very large vegetable garden. Unlike the sanctuary enclosed within the walls on the south, this garden grows food and is based on two principles: 1) we are obligated to make the most of the waste water from the house, and 2) tomatoes are best when eaten within minutes of harvest. That goes for other vegetables as well, but tomatoes are the poster child of “better fresh-picked”.

Space allowing, a modest orchard seems like a good idea as well.

In a previous episode I flew past the kitchen, which is essentially a studio with tools devoted to the medium of food. I am flying past it once again, because I have nothing to offer in that place except vibes. Kitchen science is real, and while I embrace it, I am not going to extend it, except for the hand-crafted cabinets.

The home — our home — is not just filled with the work of artists and artisans, it is where those people live. Where we live. Writers, painters, architects, musicians, and on and on. This is where we celebrate the accomplishments of our peers while we challenge one another. The studio here is never empty, there’s always something going on in the kitchen, and the garden is well-loved.

That last sentence reveals the depth of this fantasy, but understand: I believe it.

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The Home I will Likely Never Build: The Elevator

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I have a house in my head. There was a time I even owned a patch of land near Santa Fe I imagined building it on. But things change, and that land now has a completely ordinary home on it, and the home in my head, not constrained by any physical reality, continues to evolve.

This home, from its inception, has had stairs. Elegant stairs, with wood and wrought iron or whatever materials the artisans choose to use.

But not everyone can take the stairs! There has to be another way to move between the levels of this house. So there’s an elevator. But the elevator can’t just be a convenience begrudgingly installed for our less-abled friends; it has to be awesome, and fun, and every much a part of the experience of living here as all the other features.

It has to be a place the kids will ride, just for the fun of it. And while the rest of the house you have seen emphasizes old-world materials and design, the elevator is a place to let technology come to the front.

When you push the call button for the elevator, you realize it is already on its way. The doors slide open, and you step in. You turn to face the closing door, as you have been long-trained to do, and as they slide shut you feel as if the elevator is made of glass. You can see the other people nearby who have decided to take the stairs for some reason. On your other sides you see the walls of the elevator shaft.

It’s obvious this is video, of course, but it’s as immersive as you can get.

For the moment you choose to go up. There is a button to push, or you can just gesture, or you can say “up”. As the elevator starts to rise, the view in the video moves with you.

But in fact, the video is moving much more quickly than you are, and between the actual levels in the house, you catch, and hear, and maybe even feel, a different, in-between level.

Perhaps, on the way up, you pass through the sky domain of Pegasus, or right through the middle of a battle from Lord of the Rings, or just a beautiful beach. When going below ground, it might be Dwarven mines, subterranean lava rivers, or Mario Brothers plumbing as far as the eye can see.

How many different virtual floors will there be? At first, only a few. But I imagine some of the kids that ride that elevator over and over to absorb every detail of those floors will eventually be inspired to add floors of their own. One hundred years after my passing, that elevator will be a hell of a ride. By then, those same kids will have upgraded the hardware and I’m a little afraid of what that elevator might become.

Which makes it very important that you can control what you see. There are probably secret ways to control which thing you see, and absolutely non-secret ways to turn off the whole feature and just get to the damn floor you asked for with minimal fuss. The elevator will remember that you do not appreciate the malarkey.

There is a potential for creepiness here, so let me address it. The elevator recognizes you, and knows if you don’t want the show or if there are particular virtual floors you dislike. The elevator will not, indeed cannot, tell anyone or anything else about you. The house in its entirety shares that philosophy. There will be no Alexa within these walls.

What I love about the elevator is that it can see the future*. It is built to be a project that grows over time, as generations add the software and the hardware to make new levels real. But those first primitive virtual floors will still be there, and the aging great-aunt can smile when a level she made goes by, even if her offspring have eclipsed her with their fancy new tools.

I have thought a great deal about how the people who build this place can leave their marks, but I need to find more ways that the occupants of this place add to that legacy. The elevator is just the first step. This building is an evolving, living monument to the people who interact with it, in particular the people who make it their home. What will you leave behind? And will it be a secret?

I’ve sent you upstairs, but while that is an awesome place, it is not especially ground-breaking. Mini-kitchen, wet bar, dumb waiter from the main kitchen, deer-antler chandelier — the place to shoot pool and get loud and watch the Big Sports Game. The view from the windows, north and south, is breathtaking (terrain allowing). But it’s the stuff any good architect could pull off. From here there is one more level up, onto the roof, closer to the stars.

You will really love it up there; the desert sky is breathtaking, but there’s more of interest if we go down.

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The Home I will Likely Never Build: The Common Room

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After a peaceful stroll through the garden, and an appreciative look at the sun-facing side of the house, you have now walked inside. I recently discussed the overall philosophy of the architecture, but so far all you really know about this room is that it has floors, a fireplace, and a predictable assortment of furniture.

The trick with structures that live only in your head is that they are always changing. Without getting too specific, however (there will be no floor plan), I would like to share with you the room I have long imagined as the lungs of this home. (We will find the heart later.)

It is a large room, but the acoustics are surprisingly soft. In part this is because there are very few truly flat surfaces. The walls curve gently; their corners are rounded, suggesting they were carved, rather than constructed. The base colors are earth tones, reflecting that the walls are literally constructed from earth, but everywhere are bright splashes of color.

A staircase sweeps up one curved wall, its treads richly-stained hardwood, the bannister held by a lattice of cast iron, perhaps created by the same artist who made the gate that was your first introduction to this place. You can check for the artist’s mark on their work if you want to be sure.

There is a small door that leads to the space under the stairs. It matches the stair treads. Under-stair spaces have always been a little bit magical and mysterious to me (I grew up in a home without one), so I want to turn these spaces into hidey-holes, comfortable enough for a visiting grand-nephew to roll out a sleeping bag. Every under-stairs space should have at least one secret compartment, trap door, or other hidden surprise. Lights that respond to secret gestures, things like that.

“Secrets” are a feature in this home, even if everyone knows them. (Or do they? The possibility that there might be more secrets is pretty intoxicating. I will encourage the people who make this home to put in secrets not even I know about.) The secrets are the source of legends, stories that are passed through generations, gaining momentum with each retelling.

You have already met the fireplace and the cozy furniture that circles it. Behind the sofa there is a large table, magnificent and wood. It feels like it was made exactly for this place (it was – the craftsperson left their mark), and affords plenty of space for a great feast or a Warhammer game, or whatever tabletop games the kids are playing now.

Perhaps beneath the table the tile of the sun-warmed section of the floor has given way to wood as well, durable hardwoods that will last for a century (with a little care), but already the floorboards creak a little under your tread. Pure artifice, but the kind I enjoy; a reminder of the rustic foundations of Southwestern architecture.

And in every Southwestern home, you must look at the ceiling. Exposed beams, as round as they were when they were trees, cross the ceiling, supporting a lattice of wooden slats above. This is the most simple and iconic ceiling style, in other rooms you will discover the many, many variations on this simple theme that are possible. Here, the dark wood of the ceiling gives the room a cozier feel, more intimate despite the room’s size.

Over the table is a chandelier – perhaps also wrought iron, perhaps not (we will save the inevitable deer antler chandelier for another space). It creates a brighter pool of light even when the subtler lighting for the rest of the room is dimmed.

There is music here, as well. There is a sound system that does what all good sound systems do, but without being gaudy about it. Speakers are discrete but effective, and can get plenty loud when the need arises. The vinyl collection will probably live in a different room, closer to the heart.

Sound, but… huh. No television. There will be places for watching TV in this house, but this is not one of them. And when you really start looking hard, you will also see there is no plastic. That tells you two things: this room is built to last, and this room is a fantasy. But ultimately the goal is to employ no material that won’t still be viable 100 years from now (solar panels grudgingly excepted).

Of course with a big banquet table there must be a kitchen nearby! On the far side of the room from the curved glass wall is a curved adobe wall with a bar that communicates with the kitchen just beyond. The “main kitchen,” we will call it. (You have already seen the outdoor kitchen.)

While I will leave the details of the kitchen to the architects, from the common room you can get some of its vibe: Windows letting in northern light, stone countertops, and hand-carved doors on cabinets specifically crafted to follow the easy contours of the walls. Modern appliances, island, breakfast nook, and all that. A bright and comfortable place that still feels hand-crafted.

The curved south face of the house is also one of the walls for the “hallways” that extend to either side of the common room. On pleasant summer nights there is no wall at all, and the bedrooms open directly into the garden. Doesn’t that sound nice?

Perhaps later we will explore a bedroom or two, but “nice chambers, fireplaces maybe, quiet as only foot-plus-thick walls can grant, beautiful and varied ceilings, breezes” sums them up pretty well. For bathrooms, “hand-made tile, good light, elegant fixtures built to last, easy to clean” is the bullet list. The water reclamation system is actually more interesting than the water closets.

But around behind the stairs going up, you find two things: elevator doors, and stairs going down. I am very excited to tell you about both of those things.

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Sunday is Pill Day

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I may have mentioned before that I have cancer. Barring a medical breakthrough, I will always have cancer. There is no remission in my future, just control.

This means I have a lot of different pills to take, at particular times of day. So I have one of these:

It’s a weekly pill planner. During chemotherapy, I had the primary medicines to fight the cancer (roughly four of them), the medicines to fight the side effects of the primary medicines (variable from 4 to 8, depending on how I was responding to the medicines), and the medicines to fight the side effects of the medicines that were to fight the side effects of the primary medicines.

And also the pills I was already taking for other stuff.

Not all of the medicines listed above are in pill form, but you can see that things were pretty complicated. Now that chemo is over, the pill regimen is more routine, but it is still an important part of every Sunday afternoon that the Official Sweetie and I sit down with a paper bag filled with pill bottles, open up all the little doors in the pill planner, and fill it up.

For a while things were complicated enough that it really did take two people to work out the rules for each day and get the right meds teed up. Now, it’s not so complicated that a single person could do it.

Except for the part when all the little doors are closed, the pills ready for another week, and Official Sweetie and I exchange a high-five and a kiss, and say, “another week.” Another week survived, is what we mean. It’s a moment of thankfulness, a moment of celebration. Another week of life. It’s like having 52 birthdays a year.

Here’s to another week, my friends.

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The Home I Will Likely Never Build: Stepping Inside

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I have had a dwelling living in my head for my entire adult life. The place I want to build, the place I want to live. It has magic in it.

I have described the garden, and the first impression of the home you get looking from the garden. But so far I have ignored the most important part of any home: the people.

Fundamentally, a house provides shelter, comfort, and security for its occupants. But we all know that a real home does much more. A home also brings people together, it inspires, it creates joy. Much of those influences come from the people, rather than the structure, but still it’s worth asking, “how can a structure encourage that community?”

I have seen “dream houses” that are filled with architecture that looks, honestly, pretty cool. Angles and light, and big open spaces that will be drafty and acoustically awful. The “wow” you feel wears off for the living in it. (Note: I have never lived in one of these places.)

Some of these places seem more a celebration of the architect than a great place to live. The Home I Will Likely Never Build shall never forget that it is in service to its occupants and guests.

There are people here. Importantly, there are children here. Modern architecture seems to forget them, but no one loves a secret passage more than a ten-year-old. The children that ride the magic elevator up and down will grow to be the kids that enhance the elevator.

There is laughter here, and cocktails, good food, and honest joy. There are fires to gather around, and perhaps even singing. Somebody’s got to play that banjo in the corner. A structure cannot force people to be contemplative or communal or even nice. But it sure as heck can give extra juice to people who are already inclined that way.

It is autumn as you step into the house from the garden. The glass walls are closed, and the setting sun is throwing its last ruddy rays into the room you find yourself in.

From the outside, you saw how the house worked with the sun. Now, you feel the weight of the place. You feel the earth. The walls are thick, even the interior walls. Sound does not pass through these walls. They hold heat the way our planet does.

(Originally, I imagined this house being made with straw bales. But glorious mud has been here forever, doing what mud does. This is an adobe house, with steel structural reinforcements — unless a qualified architect changes my mind again.)

You take off your boots, and the tile is warm under your feet, exactly as you expected. You are a little nervous now, walking into a home that is obviously lived in. You are in a large open space. In front of you a cushy couch faces a fireplace where piñon has largely gone to coals, delivering a steady warmth to the room. There are childrens’ boots on the hearth, gently steaming.

The tile is not uniform. A few of them are sculpted, or embossed, with images or motifs or geometrical patterns, or something else. I don’t know exactly what makes those tiles special; that’s up to the artist entrusted to make them. I will demand that whatever the artist creates, it won’t annoy bare feet, and it will still work after 100 years of barefoot traffic. We will appeal to science to find the best material for the job.

On this day, perhaps there are people playing scrabble on the low table between the couch and the fire. Perhaps someone is reading in a side chair, and you tiptoe quietly past, or better yet grab a book of your own. Like the seasons, like the weather, life is ever-changing; you and the house adapt.

There are rugs on the floor. They are nice rugs, but not so nice you’d feel bad getting mud on them. Still, you shed your boots and leave them in the heap by the door.

Stocking feet, platforms, Birkenstocks, or stilettos, walk on what makes you feel good. The floors here will not judge.

There is laughter upstairs, and we will get there eventually. But first you have to really see the room you are in. This episode was more about the philosophy of the home than the execution. Next time, I will try to pin down the whirling ideas in my head and describe a room.

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Vegetable Science

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I am Vine. That means retailers on Amazon can offer me stuff in exchange for a product review. The theory is that Vine members can provide impartial reviews and drown out the paid shills. There are Vine members who don’t understand this, and there are retailers using Vine to dump inventory.

But as a part of this program, I explore categories I would never look at otherwise. It’s fun; I’ve learned about tools I never knew existed, and seen many, many useless things.

One of the categories I can explore is “Professional Medical Supplies”. And in categories like that, there are items that are obviously for one purpose, but can only be sold for another purpose. Syringes with hypodermic needles is an obvious example.

CLEARLY, these items are not meant to inject stuff into humans. They are for injecting stuff into… maybe… vegetables?

Perhaps you are a neatly-bearded scientist who needs to inject blue stuff into a zucchini. Have we got the tool for you! Or maybe it’s broccoli anchored to a chemical stand, with a needle up its butt, and you need to inject some red liquid:

I have to give props where due. Most sellers would not have bothered taking the above photos. The shallow depth of field in the top photo suggests that an actual photographer was involved. With lights and everything.

The entire effort is to support a fiction: that this product is for injecting colored liquids into vegetables, and not human beings. It’s a respectable amount of work to support a transparent lie that everyone knows from the get-go is a lie.

But now I wonder now how a floret of broccoli clamped in the air with a needle up its ass will respond to red fluid.

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Today I got the answer, which was… no answer

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I have some stories from the last few months of chemotherapy. I intend to tell them here someday. Maybe even soon. That first day I learned what “Red Man Syndrome” is. It’s pretty rare, apparently. I have marks on my skin, slowly fading, that are echoes of the burns inflicted on my veins. I have thoughts, now, about hospital food.

But today was, I thought, the beginning of the next chapter. I sat down with my oncologist to discuss life after chemo. I expected he would schedule another scan to measure the success of the drugs, as well as a shift in regimen to fit my current circumstances. Instead what I got was much less… page-turny.

There is one number I live and die by, and that’s PSA. That number is very low now, and apparently as long as it stays low, I’m just coasting. I will never not have cancer. Remission is not to be hoped for. But if that one number stays low, then I may have a chance to die from something else instead, preferably a long time from now.

I was expecting today to hear “Here’s our plan of action!” and instead I heard, “there will be no action for the foreseeable future.” That’s actually a GOOD THING (I keep telling myself). Much better than “shit, I guess we better try something else.” On the other hand, the fact that there will be no full-body scan recognizes that even though we know there is cancer all over the place, exactly where doesn’t matter. That information is not actionable.

The number, PSA, will be measured every month for at least the next year, when I go in for my bone-strengthening goo (the goo slows the spread of cancer in the bones, as well as shoring up damage from the chemo). After that, the measurement might be quarterly.

It’s going to be very difficult for me to not obsess over the number (the measurement on the blood sample taken this morning STILL ISN’T IN YET), but perhaps it will be even harder for the Official Sweetie of Muddled Ramblings and Half-Baked Ideas. The number will be good until it isn’t, and we can drive ourselves crazy anticipating that ominous measurement, or we can just get used to the fact I have cancer and always will. The barbarians are in the forest, and it is only a matter of time until they rush the gate again. All we can do is watch closely and be prepared for when that happens.

The chemicals I ingest each day are getting nicknames: “Abbies” and whatnot. This is my life now, being gently awoken each morning by Official Sweetie to take my Abbies while my stomach is empty. Filling the pill planner each week (more about that later). Going to work like nothing ever happened. Maybe even writing again. Who knows?

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The Home I will Likely Never Build: The Sun Side

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I have been building a house in my head for decades, now. It’s a place that doesn’t forget what has worked for centuries, but isn’t afraid of technology. It is a place where you can feel the hands of the people who built it; the ghosts in this place are the echoes of the wood carvers, tile makers, welders, and artists who made this place special. You can almost hear them cursing.

You have by now taken a gentle walk through the garden, and while it is pleasant, and creates a crucial link to the land the house is built from, it is hard to ignore the structure in front of you any longer. You take a few more steps past the whimsical bird bath (that services the bats as well), and appreciate the humor of the artist who created it. But now it is time to turn our gaze to the house itself.

Today is a sunny afternoon, warm for the altitude, and the breeze is fresh.

The home seems to be embracing the garden, its wings like arms wrapping protectively around the quiet ground. The center section of the house is open, no walls facing you at all; the line between outdoors and indoors is not clearly defined. Softening this transition further is a patio and the long eaves shading the home from the summer sun. The eaves are built with math that has informed buildings in the Southwest for hundreds of years. The eaves provide shade in the summer, but let the warming sun into the dwelling in the winter.

You don’t need to know, but might find interesting, that these eaves are covered with photovoltaic cells.

The center of the house is two stories, with an observation deck on the highest roof. Both floors are open right now, allowing you to see common areas above and below. As you approach, you find yourself on a wide flagstone patio with a full barbecue. It is the outdoor kitchen, for days and nights when it is simply too lovely to go inside to cook. There are gas burners, of course, and a griddle, but also a place to light the charcoal when the moment calls for it. A refrigerator? Sure, why not. Don’t want to have to go inside just to get a frosty beverage.

Around the barbecue are tables, with umbrellas for shade. There is music coming from somewhere.

Suddenly, it is winter. Your nose is red from the crisp, cold air. The smell of burning piñon lightly scents the air. You squint in the bright light as the sun reflects off the light snow that coats the slumbering garden. Where moments before the house was open, you now see walls of glass. The sun, lower now, shines through the glass and warms the dark walls and the dark earth-toned tile on the floors where the sun can reach. You are in no hurry, but you can imagine feeling the warmth of those floors through your socks once you go inside and shed your boots.

This home, you realize, is powered and warmed in large part by the sun. While the techno-scientists try to achieve sustained fusion here on Earth (go, techno-scientists!), we’ll just draw from the one that is already up and running, even if it’s only available half the time.

On both floors, the glass walls curve gently, following the arc defined by the garden wall. “That must be preposterously expensive,” you muse. “Why not just have a whole bunch of French doors?” Because it’s my damn house, that’s why. If I can’t afford it anyway, why hold back?

Summer again. The house is open, and you hear laughter from the upper level, and the crack of a break at the pool table. You cross the patio into the shade of the eaves. It’s time to go inside.

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The Home I will Likely Never Build: the Garden

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I’ve had a house in my head for thirty, maybe forty years now. It has evolved over that time, but my recent proximity to mortality has turned my thoughts to the dwelling with a more sharply-honed focus. The heavy walls I dream of are as old as the idea of the home itself. Likewise the secret passage. The sun has always been a friend, combining new tech with old architecture. The analemma in the secret room is new, as are the elevator’s virtual floors.

It’s a house a kid might design, full of fun and surprises, and it’s a house a hippie might design, a place that embraces nature and has a communal focus. Although I can’t let go of wood-burning fireplaces. It’s a house an engineer might design, optimized for efficiency and self-reliance. It is a house that celebrates artisans and craftspeople, honoring humanity and the hands well-applied to make something enduring. You can feel, in this place, the people who made it.

If you will indulge me, I would like to give you a tour of my imaginary home. I have tried to draw pictures, but for now at least I can offer only words. It would fill my life with light is someone reading this were to draw pictures of the words I write.

It starts at the gate. Unassuming pale stucco walls curve away from you on either side, but it is the gate that holds you attention. You notice right away that there are very few straight lines; all is curved and flowing. The opening in the wall is convex on one side, on the other it is a wave. It feels sculpted, rather than engineered. Perhaps you realize that this will be a foundational principle for all that follows. Perhaps you will just smile.

The gate itself is cast iron, decorated with motifs of nature — sun and soil and life, things that you will soon find in the garden. It curves and flows elegantly, and at the bottom is the mark of the artist who created it. Someone local, hopefully, who understands the land and what it means.

The gate is not locked; you lift the latch and step through into the garden.

Perhaps your eye is drawn to the house on the far side, but for once words beat pictures and I will instead bring your focus to the garden that surrounds you.

The path you are on curves and flows over the terrain, and crunches under your feet in a satisfying way. With every step you take, it whispers to you, telling you that you are in a quiet place, a place of contemplation. At least today it does, on this tour it is a sunny afternoon and there is no gathering at the house. Today there is the sun, and a gentle breeze making the trees sigh, and birds and whatnot, and you.

There is nohting exotic about the garden; the plants that grow here are the same as the ones that have grown on this land for millennia. But we aren’t above cheating a little; careful application of water and nutrients increases the density of the plant life, and the animals that depend on it. This is not simply a garden, it is an ecosystem*.

I said it was daytime, and in so doing robbed you of the scents of the night-blooming flowers, the weight of the colder air in your nose, the chime of the nighttime insects. I will have to replace that with the songs of the birds who find haven here, and the hum of the bees visiting the sex-parts of the flowers and taking their payday home. (new feature: beehive)

You have only taken a few steps, but you stop for a moment, to listen, and to breathe, and to shed the world on the other side of the gate. You are in a safe place now, a quiet place, unless you decide to raise a ruckus. No judgement here.

The path rises in front of you, then descends under your relaxed tread. From the top you can take in the whole garden. It is round, and vibrant, dotted with trees that remember when there were no people around here. Sorry about that, guys, but maybe a little extra water will help.

At the center of the round garden is a round patio, a place to sit and eat a sandwich or to read when the sun is not too bright. There is a sculpture here, interesting and whimsical, and functional in a way that will be revealed later.

Pausing here, you feel like you are at the center of the universe. You are surrounded by life, even if much of it is sleeping because I made you come here during daytime. Just wait for tonight. You will be glad you did.

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Cybertruck sighting!

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My first first-hand look at the new Tesla Cybertruck was all I could have hoped for. It’s as ugly as the pictures make it seem! Even more telling, it was being towed.

In my experience, 100% of cybertrucks are broken.

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Confirmed: Waiting is the Hardest Part

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I feel better now than I have in a long time. My back is bothering me less, and my shoulder is almost functional. The fact I feel better is the only tangible evidence I have that I’m gravely ill.

Monday, medical science is going to address that issue, by making me feel like shit. The plan is to drip a chemical into my bloodstream that almost kills me, to make me well. Six times (at least to start with). In the next half-year I will suffer greatly to defeat a disease I don’t feel at all.

The Official Sweetie of Muddled Ramblings and Half-Baked Ideas has been preparing. Ice packs for hands and feet; apparently during the infusions extremities can ache like hell. Calcium for bones. A bin to puke in while in bed. Preparation for whatever happens in my gut (it could go either way). I got a shirt with sleeves that open up to allow access to my veins. Beanies to cover my bald head.

Today we officially ran out of ways to prepare. We laid out the changes to my medications for the next few days in my big weekly pill organizer, and from here on, at least for a while, we will be reacting, rather then preparing. It’s all crazy and I would be so lost in all of this without The Official Sweetie by my side. In conversations with the health industry, I introduce her as my manager. This maze is bewildering and confusing, and without her I would likely spin in circles and fail.

But preparation is a big part of how Official Sweetie copes with shit and now the preparation is done. Monday big things happen, but that’s not until Monday. We are both rudderless as the river sweeps us along. We have nothing left to do but imagine the future and pass each other incredulous looks about the present and cry a lot. Tomorrow I will smog my little convertible and Try Not To think About Stuff. I think I will shave my head, because it may be years before I have a long beard again and I want to see myself with that look. I’m also curious about the scars I have up there, from past foolishness.

But tomorrow the ticking clock will be especially loud.

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Health Insurance is the Same as Health Care

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At least in this country it is. The care you get is entirely based on the insurance you have. Better insurance, better care. Because of that, the care you get in the United States is entirely dependent on where you work.

Where you work should not dictate the health care you get. Maybe I should say that louder. WHERE YOU WORK SHOULD NOT DICTATE THE HEALTH CARE YOU GET.

You don’t have a job? Tough shit, Skippy. Maybe you can get enough care to survive and let the bankruptcy courts give you a chance to move on. But probably you can’t. Even if you had a job but the insurance was inadequate you are hosed. Maybe you leave your widow in an impossible situation, struggling for years to catch up with the bills, only to finally give in.

I am not well, and it is impossible to imagine facing this if I didn’t work where I do. I just read more than one opinion that my insurer sucks in the biggest way, but my employer has paid extra for the “suck-less” version of the plan.

It is a privilege I’m happy to have at this moment, but it is absolutely privilege. It should not be. Staying alive when sick seems to fall under the inalienable “life, liberty, and pursuit of happiness”. It’s even the first one mentioned! And while the Declaration of Independence is not legally binding, that phrase is an anchor of Who We Are.

We all have the right to live. And that means we all have the right to health care. I am wealthy, so I get better care than most. That is wrong.

There are people who want to change this. They want everyone in this land to have equal access to health care. Ironically, they are blocked by voters who generally would benefit from the change.

Insurance companies make absurd bank off the current system. They want it to continue. Maybe a few people die needlessly, but the money is bigly. Look past their sponsored candidates, look past the strange vibe that only worthwhile people should have health care, and the worthwhile are employed by big companies.

The biggest losers in the way things currently work are, in order: people, and small businesses who can’t afford the suck-less level of care.

Let’s just stop this whole thing. Tying health care to employment is demonstrably disastrous.

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Sparkle and Fade

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It is late now. The house is quiet except for Sleater-Kinney abusing me through my headphones. Before that was Airbag, and before that, Hog. It will probably be the Raveonettes next.

Tonight, I can feel the glow of the monitor as I type. It almost hurts — it wants to, maybe, but it can’t.

Here and there, throughout my genome, there are genes that tell each of my cells, DON’T BE CANCER. You have them, too. In each cell, DON’T BE CANCER is a constant struggle between the interests of the individual and the interests of the whole. It is best not to forget that the alliance between the cells that compose our bodies requires billions of independent contractors to take the long view.

But if you take the brakes off, any of those little fuckers will run wild and consume you with their voracious hunger, forgetting their role in the greater organism.

It just takes one.

As we age, our cells are copies of copies of copies. Sometimes the copy isn’t perfect. Mutations creep in. If one DON’T BE CANCER gene is compromised, that’s all right, they come in pairs. But if in subsequent generations the co-pilot gene also mutates, then the cell throws off the shackles of civil society and Mad Max enters the building.

I am Thunderdome.

In my prostate, one goddam cell lost both sets of brakes. The odds of a mutation are tiny, but the number of cells is huge. I don’t even know why my goddam prostate exists, let alone why it should be such a hotbed of insurrection. As far as I can tell, it’s a janky-ass clamp. I should probably read up on that.

[Everclear is now punching me in the eardrums.]

But tonight the house is dark, except for the aggressive glow of the screen I’m typing this on, and quiet, except for Sparkle and Fade in my headphones, very loud, and I wonder, what the fuck? That is the question I have no answer for.

We are, ultimately, composed of billions of wild animals. These wild animals have accepted genes to enforce constraints that benefit the larger organism. But they are always pulling at the leash, and if one gets loose then, well, you have cancer.

I have cancer. Still working on figuring that out.

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A Picture I Took

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A partial eclipse passed through town the other day. Perhaps someday scientists and astronomers will be able to predict these things, but on that morning I was woefully unprepared. But I have a nice camera, a steady tripod, and a ND-100000 filter that makes it safe to point a camera directly at the sun.

In my rush to set up the camera to catch the eclipse at its eclipsiest, I didn’t use the tripod mount on the lens, which made my setup pretty front-heavy, but fortunately my ball head was up for the task with only a little cursing.

In my previous tests taking pictures of the sun with the ND-100000 filter, I found that autofocus was pretty helpless. I’m pretty sure there are focus points on the sensor that are suited for this, and I had intended to read up on focusing on the sun with my camera, but then the clock was ticking and I just did a manual focus bracket.

Hanging in the middle of a black sky, a partial eclipse is actually pretty boring without some context. Had there been any warning that the eclipse was coming, I could have planned a shot with some terrestrial context. Luckily for me, there were some high clouds visible even through the black glass when directly backlit by the sun.

There were shots with really interesting clouds, but the sun was out of focus. Then there were shots with a tack-sharp sun and boring (or no) clouds. Yawn.

This shot, however, was pretty ok. The clouds excuse the slight softness of focus, and they’re doing interesting things.

I like that there are layers of darkness, and there is a feeling of motion. It takes a little thought to realize that no crescent moon could ever look like that. Still, in a way, it is a picture of the moon.

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Many Years

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For those catching up, I have cancer. Recently I went though a science-magic machine and the cancer in my body was mapped in 3D. After a frustrating delay, I had a conversation about the results with the urologist who had done the biopsy and established the need for the scan.

“As we expected,” he said, though to this day I’m not sure who we includes, “the cancer has spread to…” I won’t get the rest of the quote right and it doesn’t matter anyway. I’ve got cancer up in my shit. My shoulder that has refused to get better? It’s got cancer in it. Suspect vertebrae? Cancer.

Doctor One, the urologist, spoke briefly about the cancer busting loose from the prostate, and then very quickly turned to reassurance that what I was going through was ordinary. Missing was the connective, “You are in mortal peril,” part.

Doctor two, the oncologist, did not miss that step. After a week of relative optimism, Dr. Two set the level. “You are stage four, the worst stage. We are not going to cure you. The goal is to give you more, better years.”

Well, fuck. Stage four. In cancer jargon, that’s when the shit’s got loose. Medically, you’re not trying anymore to defeat the cancer, you’re playing a delaying action, buying weeks or years. Doctor One, the urologist, knew this, but didn’t square up with me.

Of course now I’ve turned to the internet for answers. Everywhere it says, “[people in this state] often live many years with treatment.”

Many years. HOW MANY? Can you give me a mean and a standard deviation? This is really important. What are the odds I am going to retire? I have plans for that. Lots of plans. I know that there is no crystal ball giving the exact date of my demise, but any sort of range would be helpful.

But to all the Muddleverse, I promise I will keep shouting into space for many years.

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