An Atypical Lifestyle

 

I was recently asked, seemingly with some surprise, about my slightly less than mainstream lifestyle. In fact the phrase “renowned and brilliant engineer living in a barn” was used, follow immediately by “how the hell did you get a woman to keep you company?!”, or something along those lines.

OK, first off, if anything, infamous is probably a more accurate word than renowned, and I doubt even that is the case. The reality is more along the lines of “who?”.  And brilliant? That’s just wrong! Unless it was being said with a dripping dose of sarcasm, as in “Oh, that’s just brilliant!”, while looking down at the results of a dropped paint can that just exploded all over the place.

But OK, it’s true that I was, in a previous life, an engineer and that I found a partner that, for the past 20 years has lived in a barn with me.

More specifically, we have a 380 sq. ft. space that is split between a single multi-purpose room plus a bathroom

tucked in the corner of a 1500 sq. ft. barn.

This is where we cook, sleep, eat, and spend our evenings. (My sister calls it the transformer room.)

But that’s not the whole story.

The rest of the barn is my workshop where I spend a lot of time

and The Wife has a separate 400 sq. ft. barn with a 16 x 8 foot deck that is her workspace, where she also spends a lot of her time. And we also have 14 fenced, isolated, rolling (three ridges and two valleys with no flat spots in-between), wooded acres to wander as well. So it’s not like we’re “in” a single room all day.

So how did I get woman to keep me company in these circumstances? Well it hasn’t always been easy! For either of us.

The Wife and I met at a dinner party in 1982. She thought I was really boring and wondered why I had been invited in the first place. I didn’t think much about her one way or the other, being more concerned with how uncomfortable I am at social events and wondering why I had agreed to come in the first place. But working different divisions of the same company we kept running into each other,

The Wife, The Daughter (mine), and me the day we made it official

and four years later we shacked up, a year after that we made it official in the eyes of the IRS.

In many ways we make no sense together at all. I’m a fairly active person and mildly aggressive about maintaining my physical conditioning, she’s more sedentary and food-oriented. (When we travel together we don’t go from here to there, we go from restaurant to restaurant until we eventually get there!) In the morning I can’t wait to get up and out the door into the open air where I pretty much stay until sunset regardless of the weather, she loves her air-conditioning. I’ve hiked several thousand miles of wilderness trails, some of them pretty hairy, requiring a certain sense of adventure and a degree of nimble-footedness, her threshold for adventure is more along the lines of buying a new brand of salad dressing, and she can break a leg stepping off the sidewalk – something she’s done twice.

But there are ways we make sense together.

In slightly different ways both of us are, to put it mildly, uneasy around people. My particular form of autism (Not that we knew how to label ourselves until recently) makes it uncomfortable for me to be around and deal with people. I’m agitated while trying to deal with social norms I just don’t understand and therefore am really bad at. The Wife’s form of social atypical-ness is similar but slightly different. She can play the socializing game much better than me when she has to, but people scare the crap out of her. She is very distrustful of pretty much everyone and for her, being around people borders on terrifying. Either way, interaction with people is exhausting for both of us.

Even though we didn’t have names for what we were beck then, we knew early on that sharing these traits actually made us bad for each other, feeding off of each other’s social issues like a sound-system  squealing out of control, and together we were, not only feeding off of each other’s social issues but also creating a codependency. And in case we missed the implications of this before, they were made clear on Halloween of 1984.

Pretending we were normal people we had spent a couple weeks assembling our costumes for a party, and on the day got dressed up, drove to the location, parked, shut the car off, watched a few people going into the venue, started the car, and drove away to spend the evening on our own. But we made the conscious decision that, despite this, us together, taking care of each other and creating little sanctuaries for ourselves where possible in the midst of the social chaos, was preferable to us going our separate ways and trying to live full time in a world we didn’t quite fit into.

We also share a similar, muted, consumerist’s ethic. We aren’t afraid to spend money when it makes sense. We both have rather high-end vehicles with all the bells and whistles that make driving easier, more comfortable, and safer. But on the other-hand, we built both barns, our atypical home, and the well-house, by hand, on weekends, for cash (Which is a big reason I was able to retire at 58 and finally get away from people on a daily basis). I own two sets of footwear, slippers for evenings on our raw concrete floor and a pair of hiking shoes for everything else. The Wife never wears trousers and owns three skirts. When one or another of those wears out to the point of indecency she gets the sewing machine out and makes another one.

It hasn’t always been smooth. As is true for most everybody, ours is not the well-groomed garden path of a Hallmark movie. Our road is rutted and potholed, has sharp turns with no guardrails, exhausting uphill slogs and terrifying descents, but somehow we’ve managed to make it work. For 40 some years and counting, together we’ve been crafting the complex and ever changing choreography of a partnership.

She plans and preps most of our meals (in a kitchenette with a hotplate, a countertop convection oven, no microwave, but an 18” dishwasher!), I reset tripped breakers, sort the recycling, and take the compost out. She keeps track of birthdays, anniversaries, and holidays and ensures the appropriate cards, gifts, and notes get to where they’re supposed to be, when they’re supposed to be, I keep an eye on the finances and ensure the bills are paid. She gets on-line and places orders for groceries and household goods for curbside pickup (so we don’t have to go in and mingle with people), I drive. She assembles our evening snack while I shower. I convert our space from livingroom to bedroom while she brushes her teeth. She changes out the toilet paper roll, I change out the roll of paper towels.

We’ve had our ups and downs, our bad times, OK times, and great times, and will very likely continue to have all of those, but we’ve been around the block enough now to know that we are one hell of a lot better off together than not.

I suspect that, no matter how much people, the social animals that we (the collective we) are with our desperate, evolutionary need to fit into the pack, would like to think otherwise, atypical is actually the norm of the world. If that’s the case The Wife and I fit right in.

Who’s Running This Damn Show?!

Son Of A Bitch! Made it nearly 70 years then out of the blue got slapped with the cancer stick! Who’s in charge of this crap!

Melenoma?! But that can’t be! I’ve been keeping myself protected for 40 years! The last photo I have of me without a shirt, hat, or sunscreen (but, regrettably, with a 70’s porn-star mustache!),

• 

was me holding The Daughter in my arms while we peeked around a corner. And believe me, I haven’t been able to pick my daughter up and peek around a corner in a looong time! But they tell me that it’s the foibles of our childhood, spending the Michigan summers on the beach with all the cousins, and outside most days in between, regardless of season, sans shirt, hat, or any other form of protection we wouldn’t think of doing without nowadays, that lays the foundation. (and in my case, also my late 20’s working on projects out in the driveway, more naked than dressed - I could do that because I looked better back then - under the Texas sun.)  I’ve been informed that skin cancers can, if they want, lurk for years after the damage is done without poking their heads up.

 OK. This post has actually proven to be a difficult one to put together. I mean, some of this shit is pretty personal, and is it really relevant at all? And seriously, should I even be bothering anybody else with it in the first place?

Well, if I’m going to hang around here in the blogverse, maybe.

Whether I like it or not, cancer is a big part of my trip now. Like a grossly oversized, overweight, and really awkward bag I have to drag through the airport and try to tuck under the seat in front of me, because I’m sure as hell never going to be able to travel without it again! For me everything is either BC  (PC? Before Cancer, Pre-cancer? Why are all the good acronyms already taken?), or "now".

But I don’t want to be too dramatic about it here. After all, I’m fine for now. Maybe not quite BC fine, but pretty damn close. The chemo has torn up my melanin (structurally melanin is very close to melanoma so while killing off the melanoma much of my melanin fell victim too.) leaving my eyebrows so white they glow in the dark

and stripping much of the color out of my hands, which, between the left-over darker blotches, are nearly transparent now.

Beyond that I find myself putting a damp gaiter around my neck for heat-relief when it reaches the low 90’s, rather than the high 90’s of BC. I am back to doing my full BC workout, but my right arm aches under the weight of the handweights. I’m still just as productive in the mornings (I’m a morning person) but suspect that I’m slower and have less drive in the afternoons than I did BC, though several of those things might simply be age and wisdom and have nothing to do with the cancer.

Yes, getting from there to here was a bit rough at times. The first round of chemo had to be cut short after 4 sessions because I was dropping about two pounds a day and too debilitated to eat. So I ended up on such a high dose of steroids to reverse the chemo side effects that it took nearly two full months to get weaned back off of them by tapering the dosage back slowly. (apparently bad things happen if you just stop heavy steroids without tapering off.) Steroids are supposed to increase your appetite but that didn’t seem to be the case for me, much to the dismay of The Wife who is a serial food-enabler and likes her creatures plumped up, and while on the full dosage, the only time I slept for three weeks straight was an hour in my chair around mid-day after choking down a few bitefulls of lunch. I’ve got a slash down the middle of my back that a 10” bandage couldn’t quite cover and the “lazy S” incision (That’s an official designation by the way.) in my right armpit looks more like something Zorro did with enthusiasm after a couple flagons of mead. And there is so much of me missing under that armpit that my nipples point in two different directions, like a battered old car rattling down the road with cattywampus headlights.

But seriously, there were - are - a lot of people a whole lot sicker than I was over there at the cancer center.

So, cutting the dramatics off here, the easiest thing for me to do now is just fall back on the technical crap. Something I’m good at.

Here’s a listing of procedures,  and the number of times they were done to me in the past 26 months:

• 37 Blood draws
• 34 IV placements
• 28 Doctor visits (in their offices)
• 21 Video Consults with Dr.’s or their PA/NP’s
• 10 Abdominal/thorax CT scans
• 10 Brain MRI’s
• 9   Chemo sessions with just Opdivo
• 5   Ultrasounds
• 4   Chemo sessions with Opdivo & Yervoy
• 3   Needle biopsies
• 2   EKG’s
• 2   Surgeries
• 1   Scalpel biopsy (where they sliced a chunk out of  me)
• 1   Vena cava filter placement
• 1   Sclerotx treatment (An injection of a caustic solution to cauterize the lymph ducts that used to feed the 27 lymph nodes they removed from under my arm, in order to get that awful yellow-brown fluid to stop draining out the tube that was inside me for over a month afterwards.

Yeah – and all this shit is expensive. But you already knew that. Chemo sessions are about $30K each. A set of scans, CT&MRI, is about $50K, which, oddly enough, was about what the two surgery’s combined cost, including the hospital stay. A full blood workup is about $8k a pop. On the other hand consults, in-clinic or video, are less than $300.

But I have to say, from the money standpoint, working with a large organization like this particular cancer hospital has been a dream compared to the nightmares I have heard about.

Other than the initial dermatologist visit (A private practice not associated with the hospital) and those first labs he sent in, the only billing we have received personally is as we paid my annual Medicare deductible for the three calendar-years this has been going on.  Other than that our account has always showed $0 owed.

If there have been any fights over coverage for anything done it has been between the cancer center and Medicare or our Medigap carrier. Nothing has ever been delayed waiting approval, or denied altogether. (something my brother has recently experianced.) Every claim submitted, which happens in the background without us ever seeing them, has been paid the first time around.

Of course we have been paying the Medicare and Medigap premiums all along, but that’s just the cost of living, like paying property taxes and auto insurance. At the time, when we picked traditional Medicare over the HMO-like Medicare Advantage plans with all their fancy promises but seriously intrusive restrictions, and a big name Medigap carrier who we stuck with over the years instead of chasing lower premiums with startups during the annual open enrollment (Seriously! One year we were offered a less expensive plan with a brand new Medigap company a month before they even launched!), we thought we were being responsibly careful. And it turns out we were proven right.

Bottom line - costs to date, minus the last set of visits, scans, consults, and bloodwork from Apr/May which haven’t hit the system yet, and not including parking and toll fees, fuel, and embedded transportation costs. (It’s a long trip from our place to theirs, 4 to 6 hours round-trip depending on which facility, and the trips were frequent, so we ragged out one car to the point where the only moving it was doing was on the back of a tow-truck, and had to buy another):

• Total Paid               $936,962,55
• Medicare Paid       $889,842.09
• Medigap Paid           $46,348.64
• Out of pocket                $771.82

So that’s been my cancer journey so far.

Luckily for me, the chemo was very effective against my particular brand of Melanoma, and the surgeries were successful.

As of this last set of scans and checks in Apr/May, I’ve been switched from every 3 months (this stuff was pretty much weekly when all this first kicked off.  There were many weeks when we made more than one trip to the city, sometimes back-to-back, one day after another, for appointments and procedures.) to every 4 months for the oncologist, the surgeon (Who is listed as my primary care Dr. because she was the first one I saw when all this started), and scans, from 3 months to 6 months for the dermatologist, and annually for the cardiologist. The mental health and social services people are done with me (apparently I’m not interesting enough now that I've been classified.), so I have nothing scheduled with them anymore.

Holy Cow!

 When I published my first post in over 2 years a few days ago I didn't expect much. In the anonymous, fast-paced world of social-media that's a long time, and I never was much of a presence in the first place.

In order to avoid OCD-like behaviors, of which Dad had a few tendencies so I'm a little sensitive to that, I decided I would wait 5 days after posting (my first goal was 7 days but that seemed just too unatainable) before checking to see if I had a big fat zero in the hit column. - - I made it three days - well, two and a half - and boy was I surprised!

Back when I was posting regularly I struggled to climb into the teens of hits during the first week of a post, often not even making it that far. To see nearly 30 hits in a couple of days was shocking, and even more important, 5 comments! (The vast majority of my previous posts have generated zero comments)

I'm still feeling a little tentative about this whole thing - getting back into social-media, but so far it's been way more than I expected.

At the risk of sounding mushy, thanks.

Hello? Anybody Out There? (cricket chirps)

I won’t be surprised if there isn’t. – Anybody there that is.

In fact, given my sparse readership back in the ‘normal’ days prior to 2023, I wouldn’t be surprised if this post did nothing more than just fall unnoticed into the black depths of the already overly full digital trash can.

For 9 years I published one or sometimes two posts a week with few lapses, then, a little over two years ago now, I abruptly stopped, no warning, no explanation, no nothing, just disappeared. And yes, that was a pretty shitty thing to do.

But shitty or not, I had my reasons. Maybe not good reasons, but mine nonetheless.

You see, one day in April two years ago, (Shit! It seems so much longer than that – yet somehow so much shorter.) I was on the second day of a 10 day wait for lab results when I got the phone call informing me that I had been diagnosed with a stage 4 cancer.

I dropped out of the world after that phone call, not out of meanness or spite, but because I was only doing what I had to in order to protect what little ‘sanity’ lurked in the corners of my apparently - and now officially - atypical brain.

You see, as an introvert (at least that’s what I thought I was at the time, but more on that in a moment) the stability of my world relies on a careful blend of being in control, having routines, structure, and plenty of quiet and alone-time. But that was all taken away from me that day.

Now having cancer is not ideal, but within days I found out that what was even worse was being dumped, kicking and screaming, into the horrifying, grinding, black maw of a major university cancer hospital system.

Don’t get me wrong. Virtually every one of the hundreds of healthcare workers I’ve come in contact with over the past two years has been pleasant, many have been downright kind, and others, mostly doctors and PA’s, refreshingly direct and focused. (But if you ever have the chance to choose between a physician assistant, or a nurse practitioner, pick the nurse practitioner. They are both trained to about the same level, but PA’s, like doctors, are trained in the medical model, NP’s, like nurses, are trained in the holistic model. The first focuses on treating the condition or disease, the second focuses on treating the patient. A subtle but noticeable difference.)

But once you get shoved over that healthcare-institute threshold and violently sucked up like a bit of stray fluff caught in the vortex of an industrial vacuum cleaner, they take over your life, dictating your calendar, destroying your structured existence, fucking with your schedule, screwing with your activities, constantly shunting you, along with hundreds of other sickies, along numerous, twisting hallways in a hodge-podge collection of aging,  but interconnected, building as you bewilderedly trudge from endless tests, to countless procedures, to a mind-numbing array of doctor’s visits, and even more follow-ups; each in a strange place teaming with (shudder) people, and punctuated with a frequent progression of insufferably crowded and noisy waiting rooms.

When I was a kid, pre-toddler right up to elementary school, I was considered shy. This was often accompanied by a patronizing pat on the head. For my school years, you know, the mean-kid years after all the cuteness has worn off, and then all the way through most of my professional career (Some big kids never grow up and are still mean kids), I was considered weird. (My poor parents. According Mom I was a pretty happy-go-lucky kid until around age 5 when I suddenly got all serious, brooding, and standoffish, and they could never figure out what they did wrong. Never putting together the fact that that was around the age when I was suddenly jerked out of my safe little world of siblings and cousins, and thrust into the social chaos of school.)

And I pretty much agreed – about being weird that is.

Back then I didn’t know exactly why or how, but I knew from an early age that I was different than most of the people around me, OK, all the people around me in white-bread, suburban 60’s, June and Ward America, and I spent a huge chunk of my life trying to mimic what I saw those people doing, not because I wanted to, but because I instinctually knew that I had to “blend in”, at least a little bit, to survive. I had to constantly work at pretending to be the “normal” I wasn’t.

It wasn’t until much later that I was able to start getting a handle on who I really was and what was “wrong” with me, and introvertizm started becoming a part of my vocabulary.

In fact I came to the conclusion that I am not just introverted but classically introverted. Ticking off most the boxes at the far end of that spectrum, with strong sensitivities to all three of the classic S’s. Situational, social, and sensory.

As you might imagine, treatment rooms, medical testing environments, prep-rooms, operating rooms, recovery rooms, and especially waiting rooms, are all great at triggering all three of these sensitivities in a big way. (If I am going to have a meltdown it will likely occur in one of these waiting rooms where I have to put up with crowded conditions, the constant drone of useless nattering of the people around me, the insufferable indignity of waiting on often over-worked and late medical staff, and those three people that apparently don’t know how to turn the volume off when playing games on their phones.)

So my defense (Regarding disappearing from the blogerverse), is that my strategy to preserve some semblance of me in the midst of all this was, whenever possible, to completely retreat into my own private world and recharge. To climb into my familiar little hole and pull the lid shut over me in order to make the most of those gaps between hospital crap while I waited for the clawed hands of appointments and procedures to rip me back into their world.

The net result of which caused me to appear to drop out.  – OK, actually drop out.

Friend wise, no big deal. Turns out I – we – don’t really have any in the first place, not in the classical sense anyway. No dinners to be invited to. No game-nights. No backyard BBQs. Not even meetups for coffee once in a while.

But, in order to block out as much of the outside world as possible not only meant closing the property-gate behind me but also:

• Walking away from the blog, both writing it and reading the posts of the people on my Reading List, many of whom I’d followed for years and built up a (pseudo, but very real to me) relationship with.
• Abandoning YouTube, because even though I never engaged in commenting on YouTube, even the act of watching little snippets of the life of someone familiar implied some sort of social contract.
• Ignoring the dedicated email account associated with these few bits of social media I had in my life-before-cancer.

Yes, I can imagine how ridiculous all that may sound to the “socially normal”. (The proper term for that is NT, or neural-typical, and is also now part of my vocabulary, as is neural-atypical. Hey! That's me!) And I can see how what I did might be considered selfish, or even downright rude, and frankly I agree, but, well – too fucking bad. I’m the one that has to live inside my head and I just did what I had to in order to survive.

By the way, in a massive medical system such as the one that has their claws into me, specialization is the norm, which means that as a patient, who prior to this didn’t even have a primary-care physician, just the rotating staff at a local small-town clinic for annually renewing blood pressure meds (to combat the elevated BP I have when around people – you know, like when getting my BP checked at the clinic), I now have a dizzying array of doctors in my portfolio, each dealing with a single aspect of – well – me. And, along the way, with this much exposure, my high level of agitation, and elevated blood pressure in their presence was noted by most of them.

Even though I kept trying to explain it was just the result of being around people and I’d be fine once I was able to leave and go home, they insisted on shoving me in front of yet even more people, and more friggin waiting rooms, over in the mental health & social services department.

There, they pretty much told me things I already knew. Except that the result of these excruciating sessions that had nothing to do with dealing with my cancer (when you have a major medical condition, no matter how macho and independent you think you are, you do NOT want to fuck up your insurance coverage by refusing care that has been determined by several medical professionals to be justified and necessary!), is that my chart now lists me, not as introvert, but as autistic. High functioning, according to them, but definitely autistic.

That seems a bit extreme to me, (Although I don’t mind, where possible, being put in out-of-the-way rooms with views to the outside, and low noise and light levels because of that designation.) but I can’t really argue with my sister’s response which was “That explains so many things!”

So why am I back here now? What gives me the right to come crawling back through the bloggerverse portal again?

Well, I’m not at all sure about that second question, but as to the first; the very people that have dissected my head, talked me down off the ledge a time or two, and have now given my social issues an official name (No social-modification drugs though, even though a few were tentatively offered. So far I’ve stuck to the horrible green candy that is so sour it will knock you off your chair, but also does a good job of derailing a meltdown when walking away into a quiet space isn’t possible.), along with an explanation for why socializing is painful for me, are the ones on my back about socializing more. – Go figure!

“It’ll help keep you centered”, they say.

“It’ll be good for your physical as well as mental health” they say.

And when they get exasperated with me; “Because we told you to” they say.

Well now that other things, the cancer things, have started to settle down a little (on the good side), that particular yammering has risen up the priority list. Also, there’s a part of me, independent from the militantly self-sufficient and comfortably solitary me, that wonders if they might be right about the benefits of (shudder) socializing.

I’m sure the bloggerverse isn’t what they had in mind when they said “socialize”, but it’s pretty much the only tool I’ve got in my toolbox.

I never killed off my accounts, the blog, YouTube, or the dedicated email account used for them. I just walked away, so they, somewhat surprisingly, are still sitting there – didn’t even ask me to verify who I was after all this time!. So from a technical standpoint it was easy to start dipping back into YouTube a month or so ago. Just the anonymous (yet somehow compellingly addictive), shorts at first. But recently I’ve even tried a few excursions out to the longer vids of some of the artists, campers, farmers, narrowboaters, I used to have on my Subscribers list.

And it wasn’t horrible. I guess somewhere in the back of my head I worried that I might be bitter that their lives had just carried on while mine was ripped to shreds around me. But I’m not    – at least I don’t think I am –

So now I’ve begun to entertain the idea of trying out the more personal boggisphere. More personal assuming I start commenting and posting again that is. Which isn’t a given because, to be honest, though I’ve missed keeping up with people, missed my window to the world, it was sort of freeing not to be grinding out posts of my own every week. But somehow lurking around the edges, coming back and catching up with those on my blogger Reading List on the sly, seems even more shitty than when I just walked away. Hence this “explanation” post.

But, only tool or not, after two years of as much isolation as I could get, sending this post out is still pretty scary and I wasn’t sure I would actually do it, right up to the point where I clicked “post

So, not sure where this is going, or not going, but, well, here it is.

(Click “post” now)

(Come on, click that “post” button)

(What are you waiting for?! Damnit! Click the fuc- - - )