Posts Tagged ‘life’

The End of the World as We Know It

October 15, 2025

It’s not just me and it didn’t just start; it just took me awhile to notice.

I spent two years as a contractor at a major pharmaceutical company in Cambridge, MA. Life sciences, pharma, biotech, huddle together in and around Kendall Square weaving between the MIT buildings like offshoot vines. Biotech was booming, COVID was endemic (that’s what comes after pandemic and do let it raise the hair on the back of your neck), and the sudden influx of cash available for clinical trials was like Christmas morning if Santa unloaded the entire sack on your living room floor.

It was also mother fucking insane. Small companies grew faster than the infrastructure could keep up, and it was a contractor’s paradise.

I should explain my use of the word ‘contractor’. I am, or I was, a small business with a single employee. Me. I provided ‘professional services’, specifically the project or program management of financial software implementations. I am, or was, specifically, a Technical Project Manager (TPM) which is very different than a Project Manager. A TPM must have an intrinsic understanding of the system in question, how it works, why it works, who needs it, what they’ll do with it (hopefully), where the data comes from, how it gets from there to here and what happens to it during its travels etc. To be clear, we do what the PM does as well, but we are far better compensated and harder to find.

Billing is something called ‘Corp to Corp’ which means no more 1099s contracted directly by the company, and very clear contracts. This differs from the quasi-employee ‘contracted’ in place of an actual employee. This is very convenient if you’re not sure how much expansion and contraction is going to happen, and a subcontractor’s contract can be cancelled at will.

I, Mr. James Joyce, existed as JamesJoyce LLC for about ten years. Client to client to client. It was wonderful, spectacular, often mind-numbing, and with the exception of three short-term engagements between 2019 and 2020, the most fun I’ve had since I hit the tech industry in 1997.

I’ve been around awhile.

Let’s come back to ‘cancelled at will’. Contractors, services, or temps, I guess, fly under the radar of employment stats. That means if there is a massive influx of either sort, you don’t see it in job growth. It’s as if those contracted resources never existed. That’s OK. What’s not OK is the flip side when industries tank and the contractors go away and the job market still looks more or less stable.

There are enough of us to make a significant difference. We don’t collect unemployment; we just sort of vanish.

But that’s OK (or it should be if we really do treat ourselves like the small businesses we are). An independent contractor should have six months of liquid assets with which to pay oneself unemployment benefits. It’s called bench time. I don’t have a new client and I’m on the bench until I find one. Not unusual. During bench time, the cost of being a small business continues. The cost of medical insurance is based on the prior year’s gross earnings. Not net, gross. A contractor pays for everything, which is why our bill rates and our gross seem to confound people.

For example, Contractor Toby bills out at $35 per hour. Contractor Toby bills 40 hours a week because he is capped per his contract, even if more hours are required (they generally are). Assuming Contractor Toby takes two weeks off (he pays himself for those days), his annual gross is $70,000. Sounds OK, right? Depending on what you do and where you live, that might look pretty good. In truth, Contractor Toby’s net is less than half of that. Imagine being taxed at 52%. That’s not what’s happening. It looks more like this:

As you can see, Contractor Toby is in the hole Year 1. After Year 1, Contractor Toby will have six months of unemployment insurance, and his net income will be approximately $25,900. And that number might be OK except that an employee doing Contractor Toby’s job would likely have a corporate contribution to medical insurance, hopefully more than half; he would not have to carry General Liability and Workers Comp insurance; there might be a 401k matching program; and his company would be required to pay half of his Medicare and Social Security taxes. The other thing Contractor Toby would have, assuming he was an employee, would most likely be a higher salary. Industry standards suggest, depending on the industry I suppose, that a contract that nets $30,000 would likely pay $35,000 – $45,000 to an employee.

Contractor Toby is taking a hit, but he might be OK with that for a lot of reasons.

I used a low number for a reason. And that is a low number. That number, for a family of four, is just over the National Poverty Line. I checked. You can too.

Until the end of 2024, TPMs billed hourly between $110 and $175 per hour. Stop choking on your cheerios, we are worth that and often worth more.

Until the end of 2024, PMs billed hourly between $60 and $110 per hour. Also, worth it.

In comparison, Engineers, Developers, System Architects (the people who build the systems the TPM is managing) billed between $150 and $400 per hour. If you’re choking on your cheerios (again), these are the people building the systems that consolidate the numbers that publicly traded companies are required to submit the SEC and Wallstreet (see, Enron, 2000 something or other). And they’d damn well better be PERFECT.

These are the people who have disappeared. The first sign of trouble was when the jobs simply vanished. Literally. Nothing was moving. That’s OK, it’s happened before, you just have to wait it out. The second sign of trouble were the bill rates and the job descriptions. Bill rates dropped in half and jobs were combined. Still capped at 40 hours. The most common opening for professional services in the tech industry looked like this:

Candidate is a System Architect and performs all duties of the Technical Project Manager.

That’s a really bad idea for a lot of reasons starting with conflict of interest and compliance, but that’s OK. What it is, is almost impossible unless the project timeline has been extended significantly in which case why didn’t you contract two positions and get your system up in under a year? It’s going to cost the same in the end but that’s what happened. Or, is happening. I guess.

Then this happened. I thought it was a joke. It was not:

Candidate is a TPM, contract position pays $18 – $20 an hour depending on experience.

I about peed myself until I realized people were applying.

Everything in the tech world is high stress. I’ll just leave it at that.

Maybe those people applied for that job in New Mexico (remote) for the same reason I did. I applied to find out if it was a joke or a typo. A very perky internal recruiter was delighted with my resume and wondered when I could start. I backed her up and asked about the bill rates and she said, “I’m sure we can get you $20.”

I said, “it was great speaking with you, I don’t believe we’re a match, so sorry. Have a great day.”

And THEN LinkedIn exploded. Three things are happening. LinkedIn is literally spamming us with jobs that don’t actually exist. Some of them do but 800 people (yes, 800, sometimes more) have already applied or the position is filled. Now I, and some of my colleagues, are receiving links to construction projects. Damn. That’s the first thing.

The second and third are these: People are losing their shit and posting their frustration in all caps (well, there goes your career) and people are retiring in their fifties. We don’t do that. We work well into our sixties or even seventies having socked away a tremendous amount of valuable information and our bill rates are still rising because of that. We are retiring because we cannot bring ourselves to submit another resume, speak with another recruiter, go through another seriously weird interview just to turn around and do it again the next day.

It’s not just Biotech. Biotech just happens to be where I sat last. I was at the Big Elevator Company, I was at the Can You Hear Me Now? Company, and that two letter massive industry conglomerate that used to be headquartered in Connecticut. I was a lot of places in a lot of very different industries, and you know what? The Professional Services (tech) Industry has TANKED. I think a lot of things have tanked, but I only really know the world I’ve been sitting in. I do know that my boss at the Biotech company, who used to have a staff of four actual employees, plus half of my time (I was with Treasury too, that was fun) to run a massive Financial Planning and Analysis department is now alone. He wants to quit. He wants to be anywhere else but anywhere else may not be any better.

As an aside, he is a Naturalized American Citizen from a Latin American country (means he has a brown face) with an advanced (his third) degree from Harvard. He is as at risk as any brown face of being disappeared. Not deported. There’s a paper trail on that shit and it used to follow the Rule of Law. Not deported. Disappeared. He needs to remain gainfully employed by a company that could and would make an awful lot of noise if he didn’t show up to work. That’s fucking trapped. Like a rat in a cage.

Moving on.

I’m not retiring. I’m quitting. Seriously. I quit. This is bullshit and I can actually survive without that income stream. Also, I’m a well-educated White Anglo Saxon with access to family money if I find myself up shit’s creek, and a river of lawyers. So. I can quit. I can turn my back and walk away from the labor force with impunity. I cannot believe I have reason to have typed those last couple of sentences.

I’m going to be sixty-two in April of 2026 at which point I will do something I swore I would never do and take Social Security as soon as I can. It would be nice if it didn’t vanish but that’s a problem for another day.

In the meantime, I have been living an intentionally simple life. I don’t need much and I’m very happy where I am. You can take me out of this house, on this mountain, feet first.

What I’ve lost are my retirement dreams. And that’s OK too. I’m not willing to spend the next seven years as a wage slave just so I can go to Tierra del Fuego. I wanted to travel North. I would have been delighted to spend a fair amount of time in Israel with my friends (co-workers from long ago) but I’m not sure what Israel’s going to look like anyway. I try not to think about the possible long-term ramifications of the current conflicts.

I’d like a lot of things, but you know what? I’d like my car to not die anytime soon because that would be bad. Manageable, I suppose, but seriously, not good.

Bonus: Why are the biotech companies floundering? Why have clinical trials on drugs (ya know, like cancer?) stalled? I’ll give you three guesses and the first fucking two don’t count. If you’re seriously anti-vax, get off my lawn right now!

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Patrick

October 1, 2025

The Little Girl

I can see the mark from his glasses, this must have been right before bed. We were still sleeping with her; I think I kept her with us until I was done nursing. This man’s world changed when that little girl was born. It was like he was split open and all the protected stuff just poured out on the floor. Later, when she was older and we were no longer married he started putting it back but she had him, or he had her until the moment he died. I’m pretty sure he knew she had his hand because periodically he squeezed it. That’s my story, and hers too, and we’re sticking to it.

The truth is, his saline had dropped so low the swelling in his brain that shut him down would have turned off everything. However, he was still breathing right up until he wasn’t.

We got married because we wanted to have a baby together. I don’t know that we’d necessarily have gone through with the actual marriage if it hadn’t been for his parents. His mother would have had heart failure and I’m not sure WHAT his father would have done. Patrick was first generation Irish American and his parents didn’t arrive until they were in their early thirties. Religion is bedrock in that country. That’s also the reason she was finally baptized and this man LIED to a priest.

We didn’t get married in the church because that would have required an impossible annulment from my first husband (I think after ten years the church might raise an eyebrow at that sort of request). That was strike one. Strike two was that I’m not Catholic. I’m not actually anything. Culturally I suppose I’m a Midwestern Methodist and Northeast Dutch Reform (which is now called The Reformed Church in America – RCA) combination. I said, to Patrick, New Dutch Reform because that’s how I heard it in my head so that’s what he took with him into that meeting.

The Church

There were seven Catholic churches in the city/town we lived in. He’d worked his way from one to the next until he got to the seventh. Some priests wouldn’t even see him. Some just gave him the requirements (annulment, conversion (me), marriage in the church) and sent him on his way. The seventh was a cranky old man who struggled with Vatican requirements and the need to save souls.

He asked my husband if I had been baptized.

Lie number 1: Yes.

In which church was your wife baptized?

Lie number 2: New Dutch Reform.

He should have been thrown out right there. Instead, I was summoned. By myself. Alone. Shit.

We talked for awhile and I refused to lie until I ran into the wall of Patrick’s lies.

The priest asked, in which church were you baptized?

Lie number 1: New Dutch Reform.

When were you baptised?

Panic: oh shit oh shit oh shit do they do it at birth or do you have to be eight or something?

Vague half lie: I have no idea. I have no memory of this. My father was at Hope College Seminary so maybe it was then?

Boom! Magic words. My father was at Hope College Seminary but then he decided God didn’t exist and spent a few years in the military while he worked his shit out. THEN he went back to Hope College and got a degree or two in History. He did meet my mother at Hope College. All these things are true except the baptism part.

I’m not sure if he ever did the math… father at the seminary, daughter knows absolutely nothing about any of this… including the name of the church…

Here’s the kicker. The kid was eleven months old. It took that long to work this out. Next kicker: the godparents had to be Catholics in good standing.

Um. Do you know any? No. Not me. My parents for sure. They can’t be the godparents. True.

In the end, because nobody stateside could get a letter from an actual priest stating ‘good standing’, two relatives from Ireland were conscripted with two bad standing Catholics at the altar. She didn’t set foot in a church again until the first summer she spent a week with her grandparents and her grandmother took her to church four times in that week.

The End of the Marriage

We made it three years and that was all either of us could take except I think he would have kept going and just been super bitter for the rest of his life. I know we were both super lonely. Everything the original friendship was gone. The original love affair was gone. In my mind he had failed as a stay at home father, caring for the children from my first marriage and the baby girl from ours. He just wasn’t good at it and to be honest, I had tried it years ago for a single summer and was told, by my four year old son, to go the hell back to work.

In his mind, as I climbed the corporate ladder, I was turning into someone he didn’t like. He didn’t understand or agree with some of the choices I made. To be fair, I got off the corporate ladder for exactly those reasons but it’s hard to live with someone who holds you in disregard. He pulled into his shell, I worked more hours, and we both lost the things that were so precious prior to the marriage.

Good thing we got them back. Co-parenting was as easy as I think it can be. Or, it was so much better and easier than the co-parenting going on with the first two that I couldn’t have been happier. He was, and remained until I moved waayyyy out of state, my person. My in case of emergency number.

When I got sick, he picked me up. When I needed care, he gave it. When his girlfriends were making him twitchy I either talked him off the ledge or agreed that he should run like hell.

He was with us at Thanksgiving and Christmas and often at the beach in his own house. He was, my dad will tell you, the one WE kept. The best part? Our daughter grew up in an environment where she never, to the best of my knowledge, had to choose between one parent or another.

The Beginning of the End

Patrick decided to drive five hours to see my dad before he died. We don’t know when my dad will die. In the past it has looked like he was circling the drain and then he’d rally. Patrick didn’t want to take any chances. So he drove up, spent the weekend, and drove home. He needed to say good-bye, just in case.

Several days later Patrick ended up in the ED because something was wrong. He blamed it on the burrito from Trader Joe’s. Our girl called me in hysterics and I said, sweetie, we don’t know anything yet.

His diagnosis came a week later. Biliary cancer. One tiny growth blocking a bile duct. Hadn’t gone anywhere yet and he had a 54% chance of making it to the five year mark.

And then it got hard. Really hard.

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Measure Thrice

October 1, 2025

I am now aware that my bed is out of alignment. Dammit. And also, the protective film is still on the outside of one of those windows and getting to it is going to be fun but not as fun as removing the wasp’s nest that is bigger than a football from the overhang at the peak of my house. Just outside the guestroom… there’s a thought. No, stop that. Thou shall not engage in wasp warfare.

I moved in before the house was finished. That was middle of June, 2024, and also, the house is still not finished but I ran out of money and it’s good enough. Except. Except it failed the blow test and I really need to resolve that. In any event, I moved in approximately fifteen months ago and failed to nest. Mostly. I did unbox and shelve the books and managed to purge between 100 and 150 of them which brought me down to under 600. I hoped.

When I say, unboxed and shelved I mean just that. Totally random. There’s a built in downstairs, one in the bedroom hallway, one in the bedroom, and another in the itty bitty guest room.

Several temporary homes ago, my youngest daughter asked if I really meant to read all these books again. I said, maybe. She asked, why haul them around? I thought about this and came up with one answer. I came up with another earlier this week. The first answer was because what I read affects how I see the world and therefore, who I am. When I walk past the shelves and run my fingers over the spines I am reminded of how I felt and what I thought when I read those books.

Many years ago, more than twenty, I’m sure, my second husband kept a log of the books I read. It should be noted that my second husband continued to give me books for my birthday and Christmas until the day he died. He researched them all year, and that guy got me. This is important.

One hundred books were logged. You read that correctly. One hundred books. Big books. Not many little books. Books that required focus and weren’t easily accessible (in other words, not beach books). When I read the list, there were at least half a dozen I didn’t recognize at all, but I believed him. There were many books I knew I’d read and I might be able to give you a basic plot line, but that was it. I consumed too fast. I left no time between the last page of one and the first of the next. I still do that. I think I do that to let go. Maybe.

This is the second reason I keep those books. As I run my fingers across the spines I notice that I don’t recognize all of the titles. Well hot damn! It’s as if I have an entire list of unread books just waiting for me to pick up. To be fair, there are one or two or twelve that I intentionally reread periodically but we won’t get into that just now.

Oh. There’s a third reason. Of all the books I have not purged, my second husband gave me eighty percent of them. How can I let those pieces of him go? I cannot.

Phew.

Where was I? Nesting. I didn’t do it. The books remained completely random and every photograph and piece of art lived in a closet or under my bed. Photographs of my children I carefully hung in gallery frames. Photographs of me and my brother. A photograph of my step-mother and another of my father that tug my heart hard. A wedding photo of my older daughter and my son-in-law.

When a person denies themselves these things they are denying themselves a home, a home base, a safe space. I hung in the balance of not there and not here and it sucked but I couldn’t move. About a week ago I started moving.

I photographed all of the bookcases, shelf by shelf, chunk by chunk and then emailed them to myself. I expanded each photograph and made a spreadsheet. Author, title, shelving title (remove The and A at the start of a title), location, and go to. I had to guess at go to based on the number of books on each shelf. Then I started pulling books from shelves and putting them sort of in order so that I new where they should land. I carried them up and down the stairs in a laundry basket and this took days.

I got to know my library all over again. Some books made me cry, some left me with a profound sense of grounding, some made me laugh (because Christopher Moore and Tom Robbins are REALLY funny), some are from other people that I will never read again but will keep forever, and there’s Stephen King’s Gunslinger series. I finally tossed all the REALLY old paperbacks that were no longer readable. I had some that belonged to my mother with her name on the inside. Books she would have read in high school or college. That was hard and I might retrieve them from the recycling bin. Maybe.

My library contains five linear feet of nonfiction. Half of that came from my father’s library (historian), a good chunk from my university years, and some I just seemed to acquire. I’m not counting the cookbooks. I have a lot of books about Israel and also Palestine. I have medical books and mental health books and biographies. Who knew?! Not me.

In all that I only have four hundred and forty books. This very exciting. This means I can acquire one hundred and sixty books before I consider myself the cat lady of books. My intention is to liberate most of my father’s Napolean collection (it’s kinda big) and anything prior to WWII. I’ll wait until he’s dead. He’d notice. He’s already lied and said he got rid of all the Napolean and then he hid those books so I wouldn’t find them. Hoarder. I’m also going to take anything by Bernard Cornwell unless I already have it.

About those paintings over my bed…

I measured THREE TIMES AND ALSO USED A LEVEL. I’m leaving them as they are for a bit. I’m not sure why. They’re very important and my second husband matted and framed them for me. Blow up the photo if you can. They are three watercolors of the same still life. I picked the flowers from the garden and stuck them in a small pitcher. I sat with my oldest daughter (the last baby wasn’t there yet) and my son on the floor with sun streaming into the woods and helped them draw out the forms. I made up their palettes, taped down the paper, and we got to work. This was the summer of 1996 which makes us five, ten, and thirty-two. I remember exactly how I felt and if I had to leave everything behind, including my books, those are the three things I’d take anyway.

There is very little white space (blank wall) in my house because the lower level, facing east is ALL window, one end to the other. The southern side is window, back door, and wood burn stove area. The west side has a little room and so does the bottom of the stairwell. This house is a story and a half which means no attic and four foot walls before the pitch begins. If the middle of the house staircase didn’t have walls on either side, I’d have a problem.

With two exceptions, everything is up. Nothing else was measured or leveled or anything except me pounding a nail into a wall and slapping the painting or photo up. It looks like this:

Bang, bang, bang and done!

One photograph with each baby in order left to right, dob 1986, 1991, and 2000.

Because I went on and on about them, here are two of the three upstairs bookcases. Why yes, that *is* the top of a china cabinet. Heh.

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Thoughts on Theo

September 22, 2025

I’m not suggesting this is a good idea. To be clear, I think it’s a bad idea because next in line to the thone is Mr. JD Vance and he scares the bejesus out of me. I do wish Kevin McCarthy had managed to retain his post because he at least appeared sane but I suppose if you can’t retain your post, well, you might be a little wobbly.

We have a history of assassinating American presidents. Lincoln (1865); Garfield (1881); McKinley (1901); Kennedy (1993). A significant and nearly successful attempt was made on Reagan in 1981 but I can’t bring myself to count the attempt on Trump (was that this year or last?) and my search engine shows a total of four attempts, none of which are memorable. The way I see it is if you can’t do better than clip the guy’s ear, I can’t possibly take you seriously. Mr. T. Roosevelt was wounded in an attempt and this is worthy of the wiki quote:

“Schrank’s bullet lodged in Roosevelt’s chest after penetrating Roosevelt’s steel glasses case and passing through a 50-page-thick (single-folded) copy of his speech titled “Progressive Cause Greater Than Any Individual”, which he was carrying in his jacket pocket.”

Well. DAMN.

I’m not generally interested in conspiracy theories but the ear clipping feels somewhat suspect. Just a bit. How the hell do you get yourself in position with the correct weapon and effing miss?! One would hope you’d practiced with the damn thing.

Enough of that.

I am wondering why he hasn’t been assassignated. According to:

Right, according to the data presented by the organizations listed above, his ratings are slipping low enough on the Red side to be worrisome to the GOP at large. I’m sure, if told, he’d smirk, say ‘fake news’ followed by several paragraphs of published words the FCC wouldn’t approve of even though, uh, never mind… and then fire someone.

His overall effect on the country has been extreme enough to catch notice. On the other hand, the stock market is still happy and until that changes we’re unlikely to have enough of a consolidated power base worthy of the Kennedy style theories.

That’s it. I’m just wondering. Not hoping, not wishing, just wondering. In the meantime, let us eat cake.

Later I’ll probably wonder what it’s going to take to crash the markets.

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The Dancing Mask

September 20, 2025

I dare you. I double dog dare you. Ask me how I am.

Wait… hold on… there are some caveats.

In my experience, in both directions, when people ask the question, ‘how are you?’ the question is rhetorical. No. That’s not quite right. It’s a social agreement. We will ask, how are you, and what we’re really saying is, I see you. I acknowledge your presence as a sentient being. If you asked a dog, you might really mean it because, come on, dog communication is limited.

The second part of the social agreement is the answer and the answer had damn well better be, ‘I’m great! How ’bout you?’ Smile smile smile.

This is a really useful social agreement because if it’s done right, it can lift up an entire line at a busy pharmacy. What it is not, is an invitation to tell the truth, unless the truth is exactly what came out of your mouth as per expectations.

OK, we’ve got that out of the way. The next sort of ‘how are you’ has the potential to produce egregious results. You know, freaking land mines. As in, you asked and I opened my mouth and answered the question. You would think, therefore, that the asker would be at least somewhat prepared for an honest answer which would most likely include some, if not all, of the related emotions.

A friend from high school reached out via Facebook Messenger, honestly asking me how I was because in 2019 and 2020 and even 2021 it was perfectly obvious that I. Was. Not. OK. Not even slightly. I actually wrote and hit the publish button on what my cousin refers to as my Suicide Manifesto which was written in response to the number of people (80%) who reached out and shamed me versus the 10% that simply unfriended me, and finally the 10% that reached out and said, I’m here. The manifesto defends the right to die. Hard. Stop. For what it’s worth, that was the all time top hit of any post written between January 2007 and probably 2021. My blog wasn’t inactive at that point but it wasn’t at it’s all time peak either. The top posts were getting approximately 200 hits. The manifesto, published on a nearly dead blog, got over 500. I lost track of the number of times it was shared via the blog site or the Facebook link but it was astonishing.

No one said anything. There might have been one or two comments from long time readers but otherwise it was met with mic drop silence. Because, really, what do you say to something like that?

And what do you say when someone answers the ‘how are you’ question with stark honesty?

Apparently you run like hell. I did ask him. I did warn him. I did note, right up front that most people don’t really mean that when they ask the question and at that point in my life, or right that second, I was going to answer the fucking question. So I did. I’d like to say I’m sorry, but I’m not. I did warn you. I won’t get into what that kind of question is looking for at this point. It is looking for something, but not the truth.

Fast Fucking Forward to February or March of 2024. I have a new doctor. Not a PCP, not a therapist, an MD specializing in the care and maintenance of people like me. Everything from the appropriate medication to a phone call to my step-mother when I didn’t answer the phone. She was worried. It was OK, but she was worried and she did something about it.

These docs are NEVER in network because insurance companies will reimburse for either 15 or 30 minute limited sessions and THAT is not enough to understand what’s happening inside a person. Especially people like me.

I call it my Dancing Mask. I took this term from a book series called Red Rising by Pierce Brown. I won’t bore you with the story arc, but I do want to acknowledge that particular source. In the context of the story, the term ‘Dancing Mask’ is what you put on when you need to read a room, be read the way you want to be read, and navigate whatever politics or shit that needs navigating and come out winning or at least alive.

My Dancing Mask is my number one survival tool and I’ve been carefully honing the damn thing for so long I don’t know how to take it off. There are two people in this world who can look at me and see through it. My doc sees through it almost as soon as I’m in the room. My step-mother sees through it when it starts to crack. I expect she’d see a lot more if she wasn’t so very aware of my boundaries. She doesn’t pry but she is alert.

My kids don’t see it because when they have seen it, the responses, while varied, did significant damage to all of us. My youngest may or may not see it but given that her father died last year and she spent the 15 months between diagnosis and death as his primary caretaker (while working and in school full time), she may not be able to cope with the possible loss of her mother.

When I say loss, I don’t necessarily mean death, but I’m getting to that.

My doc said, one day early in our relationship, ‘I get it. Just because you’re not clawing at your face and tearing your hair out does not mean you’re OK’.

Think on the ramifications of that. They aren’t good.

If I were suffering from a terminal illness that wasn’t likely to kill me anytime soon but severely limited my capacity to care for myself, I have no doubt that my entire family would gather around (something) and talk about how to take care of Mom. Because that’s acceptable. Even if I took off the mask, clawed at my face, and tore out my hair, dealing with this would be very difficult, mostly because we don’t understand it and we sure as shit don’t discuss it.

See? Look at me. Discussing it. In an anonymous blog space referring to myself as Mr. Joyce. But still, discussing it anyway mostly because my youngest daughter said, really, Mom, you need to start writing again. Can she click the link and read any of this? Probably not. But she knows I should be.

The loss of the parent you knew from early childhood to whenever now is, is devastating. Especially if it seems to pop up out of nowhere.

My mom vanished bit by bit. None of it was a shock. Best I can tell, she’s still breathing, but that’s all I know because she doesn’t talk to any of us anymore. She can’t. It hurts that bad, whatever it is (I have a pretty good idea). So, as hard as the premature loss of my mother might be, I could see it coming a long way off. My mother’s Dancing Mask has never applied entirely to her family. God knows she tried but we saw even if we didn’t understand.

I’m betting I’ll write more about this but that’s the headline.

*note, the top of post image was ‘borrowed’ from ZTenEva’s Etsy site.

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Well, This is Shit

September 19, 2025

My dad is dying. I’ve never written about this before and it’s been going on since early 2018 which sounds a little odd when you say it because that’s more than seven years. However, he is, indeed, dying. Slowly.

The initial prognosis was three to five years, leaning to possibly less than that. I heard a groggy voice croak out 18 months but that was before he broke out of the hospital and escaped with the help of his local war game buddy. Don’t ask.

Why did he abscond with himself (it’s called elopement these days)? Because there were three back to back events that were all extraordinarily important to him and he had no intention of missing any of it.

Even if he dropped dead when it was all over? My dad doesn’t think that way. Not even now.

Before I continue, here’s what it is: Myelodysplastic Syndrom, most often refered to as MDS because nobody can ever remember mye-lo-dys-plastic. MDS is not a single form of cancer or red blood cell disease. I had a friend with Lukemia who came through his two solid years of chemo, et al, and has been in remission for nearly three years. It’s called MDS but Lukemia is not what’s going on with my dad. His is a lot easier to explain. I think. Also, he is not elible for any invasive treatments like bone marrow transplants or any other organ transplant should another organ bite the dust. Too old to survive surgery although, with my dad, I find that somewhat dubious. I’d give him pretty high odds. Or I would have five or six years ago.

Essentially, his bone marrow stopped making red blood cells. A drop in red blood cells starts with anemia and rapidly turns into stupid low hemoglobin. Stupid low hemoglobin delivers super low oxygen to the brain. You can probably do the math on the end game. There are several treatments, the second of which is periodic (twice a month on average) blood transfusions. If you do this long enough you build up odd antibodies (so you have to have blood work to identify exactly which antibodies to add or subtract to the blood order prior to hooking him up to a bag or two of Vampire Juice.

Before he agreed to the port catheter (which totally freaked him out) he got stuck with a lot of needles because his veins are no longer interested in being poked. He hates needles. I mean REALLY hates needles and this turned his four hour process into escalating trauma and we thought he was getting close to throwing in the towel at which point he would eventually go to sleep and not wake up. The port was a game changer. Now he sits in his chair and binges Big Bang Theory, laughing his ass off until he decides it’s nap time.

That said, the other issue is an iron build up in his liver. Well, that’s a problem. The next solution is Reblozyl which is an infusion of (something, I’m still not clear) that has a 40% chance of reducing the frequency of his transfusions. He’s only had two of those so far so we don’t know yet.

There are other things going on that make it harder but we just keep going. My dad, my step-mother, and me. It’s good to live just one mile down the same road. The fact that my step-mother has remained even remotely sane is a mystery to me. I think it’s a mystery to her as well. Last December her mother died shortly after her 95th birthday. She’d been taking care of her mother since just after my dad’s diagnosis. It’s like watching your husband and your mother circling the drain together. A shit ton of work and more heartbreak than all that. It helps that I’m here. Not just for the added hands (I do almost all his four hour transfusions with him) but for the fact of family.

My step-mother is from Oklahoma and moved east to marry my dad in 1983. Or 84. That long ago. This means a lot of things (she’s never going back under any circumstances). First and formost, it means that she has almost no family within reach. She has me and I will never leave her short of expiring myself. There are only seven years between us and I’m pretty sure she’s going to outlive me.

As she put it, friends are great and she has a lot of them, but family is something else entirely and she once told me that she was afraid when my father died that we (me and the kids) would all forget her.

Imagine the pain of that. My heart still hurts.

I cried for two days about that, had a come to jesus meeting with myself and figured out how to behave in a way that she’d trust that I loved her as if she were my own. Because she is. We got through that. She’s pretty clear I’m not going anywhere and she certainly knows how much she matters to me. That was a big deal because I tend to wander off the map unless you’re one of my kids or my second husband but he’s dead now (so that sucks) which means I’m down to paying attention to three unless I teach my brain that someone else is as connected as my kids.

So here we are, more than seven years later and my dad is officially two years past his expiration date. Yes, we do think this is funny. We also think Vampire Juice is funny as hell.

When shit just keeps happening and my step-mother just keeps going (as if nothing was wrong at all), this is the song that goes through her head. I highly recommend you give it a listen because it, also, is funny as hell. It’s playing in my head since she shared that little tidbit. The mini banjo is perfect. He’s a standup commedian and, again, this is funny as shit. Have at it.

Well, This is Shit – Thomas Benjamin Wild Esq

This would be a good place to stop except I think it’s important to acknowledge the reasons he broke out of the hospital back in 2018. In order:

The last grandchild graduated from high school. All rites of passage like this are extraordinarily important to my dad. She would have forgiven him. Would completely have understood and was actually a little alarmed when he showed up in a wheel chair (he doesn’t need on except for long walks anymore) looking like death warmed over. But show up he did.

Immediately following graduation my dad and step-mother got back in the car and drove the remaining twelve hours to the beach. My step-mother was a blasted mess at the time. This was all new and I remember her nearly crying out the words, “I just want my husband back”. I drove down for a day and a half to get my own kids settled. They were all adults, OK, the baby was seventeen, but the other two are nine and fourteen years older. At that point they had a tendency to still assume all adults older than they were would take care of everything. My step-mother needed to do absolutely nothing for at least a week. She didn’t even want to talk to anyone and my understanding is they did a passable job.

They left the beach two days early to get back in time for my middle child’s wedding. That one makes more sense, right? I will admit that if he were forced (as if THAT could happen) to pick one event he would choose the wedding. But those other two events are things that root him to his life. We’ve been going to that beach since 1972 and we all pretend there are still only seven rental units and avert our eyes as we walk past those things that house thirty people. We also pretend we don’t see all those other people on the beach and wish massive huricanes and shark attacks on them (OK, not really).

While my father’s long term memory remains pretty much intact, his short term memory isn’t very good. This is fun for me because I can tell him all sorts of egregious untruths and he will believe me because I do it with a straight face, and 99% of the time he won’t remember anything I said during the hour drive to and from UVM. The other 1%. Well, shit. I’m caught.

Things I never tell him: anything related to childhood trauma, mine, my brother’s or his. I made the mistake of talking about one of the most minor events late one night and he cried because he didn’t know. The man was in agony and wouldn’t let me go.

My step-mother happened to be up at the time and I told her what I’d done and I was crying because he was crying and she said, very gently, he will never remember this. And I will never do it again.

Love your people gently.

(damn, that was a long one)

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I’ve been here before. I think.

September 15, 2025

In another time and place, said time and place was active between January 2007 and sometime in 2003, I used to write periodic letters that began: “Dear NSA”. I thought they were funny, maybe not so much now that I think about it.

This was before what we now think of as AI. Keep in mind that we had intranet communication long before we started throwing random shit into the VERY (stop fooling yourself) public interwebs. The NSA always collected data. Where do you think they got it, wire taps? Yeah, that too. But think about it. Long and hard if required.

While mass quantities of data became available, we, and the NSA, and all other entities collecting our pulically aired laundry very quickly ran out of sorting, parsing, and analyzing bandwidth. We got better at that. Google ‘data lake’ and then ‘Internet of Everything’ (IoE). Both of those terms and concepts are dated, but it’s a good place to start if you’re unfamiliar with those terms and concepts.

STOP RIGHT THERE: if you’re suddenly finding the need to add a quick comment educating me and any other poor soul who accidentally stumbled on this site, stop it. Don’t. Do your splaining elsewhere. I’m just trying to make a freaking point. OK? Good.

Where was I? Right. AI as we know or think we know or sorta know as of today. I don’t need to bait the NSA by calling them out via blog letter. Now all I have to do is start writing shit and click, Publish (might not even have to do that, who knows).

Do I think I’m that important? Absolutely not. On the other hand, that woman who just had a four year old snatched off the street by a well armed masked man with possibly very little training working for the Federal government? She wasn’t that important either. Not even a little bit. The four year old? Never had a chance at relevance.

Reread that paragraph.

I’m not paranoid, I don’t even pay much attention these days because I tend to froth at the mouth and that’s not useful. I’m not paranoid, I’m appalled. I’m not even astonished, just appalled. Gobsmacked. Flabbergasted. Dumbfounded. Thuderstruck. Stupified. Horrified. Pusillanimous(ed?). Etcetera.

Also, I hijacked this blog (legally). Because I’m unwilling to pay for an upgrade or use another email and just start over, you’re probably seeing the original name (ailishe) by the profile thumbnail. All content associated with the user name ailishe has been deleted. You may now refer to me as mister joyce. I’m not going to bother explaining that. If you slogged through Ulysses or had the audacity to think Finnegans Wake is even remotely accessible to all but four living people, it should make perfect sense. If not, let it go.

That’s not me in the thumbnail. Don’t be silly. That is, however, my cat in the banner (unless you’re trolling my blog from the bottom and I’ve already changed it. I like changing banners. It’s fun for me.

That’s it. That’s the opening post. I’ll probably be back because my daughter has suggested strongly that I start writing again. I’m not willing to pick up the original blog for a lot of reasons, so here I am.

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