”Merrily, Merrily…” - that was the working title of the draft of my previous post for the longest time, as I chronicled some of my latest doctor’s visits this spring…
For shits and giggles, I googled “row, row, row your boat, gently down the stream. merrily, merrily, merrily, merrily, life is but a dream”…
The phrase famously implies that existence is transient and subjective. It suggests that since life is temporary, it is ultimately what we make of it. Embracing the absurdity and mystery of this “dream” can often lead to a sense of peace, reminding us not to take the waking world too seriously.
“Embracing the absurdity and mystery… can lead to a sense of peace”, ha!
Easier said than done! But I’m working on it…
Row. Row. Row…
Chapter 3: Consequences
So, I’ve chronicled how I’ve gotten in this situation that I’m in, and what my fucked up day-to-day is like, and a little bit about the adventures that have led to this fucked-up dead end I now find myself in… (read those first, if you haven’t).
The real question, now, is where the fuck do I go from here? We’ve only got so much “life force” in us, and I’ve got a serious kink in my carburetor, a little sputter in my giddy up… how do I make the most of whatever “dream” I have left?
Folks, I’m not gonna lie - this spring has hit me hard.
The one thing that’s kept me going through all of this - through the miserable nights in the hospital, counting down the hours, the minutes, until the nurse could come and give me another shot of morphine so I could sleep again, through the depressing-as-hell days in rehab, and again back home, learning how to just walk again, through all the trials and procedures…
One of the biggest things that kept me going, kept me pushing through whatever it was, was the belief that it’ll get better. Tomorrow is another day, they’ve still got some things to try, this will help, give it time, we’ll make it better…
The honest belief that, in time, things will get better…
Yeah.
This spring my surgeon told me “Mr. Barnes, I think you’re [fucked]”.
Pain doctor #5 has run out of options, and shook my hand, and wished me luck.
The hope, the belief, that things will get better… the belief that kept me fighting, and getting back up, and trying again and again… you can do this, things will get better…
Yeah, I think that hope died a bit this spring.
Not a sudden death, but more of a slow realization, and unwanted acceptance (still working on that, got a long way to go), that yeah - maybe this is as good as it gets, maybe things aren’t going to get any better, maybe I really am just fucked1 beyond repair.
Where do we go from here?
I’m kinda sick and tired, if you want to know the truth, of doctors, and nurses (love ‘em! (most of them) have the kindest hearts you’ll find!), and those stupid gowns that I can never get tied in the back…
We’re not at a total dead end - I’ve still got the “pain pump” route to try, if I want to.
It was 10 weeks ago now, when I had the consult with the PP specialist. Last we left it, they were trying to get authorization from insurance for a PP trial, and of course anytime you get insurance involved there’s a chance for turbulence - I had both Medicare and Cigna (through my wife, when she was working, which she’s not anymore) for a while - they point fingers at “who’s primary” and want to deny anything they can. (Don’t get me started on insurance companies…)
After I left that appointment, I needed to call the Medicare “Coordination of Benefits” department and straighten everything out (which I did), and call the doctor back to schedule the trial (which I haven’t).
There’s still that, the pain pump. Maybe it’ll help. I know implanting the controller, if the trial helps, is no trivial procedure.2 Do I really want to go through that? And then there’s the maintenance every so often, to refill it, I’m sure that’s a joyride, and once you get wires and tubes in ya’, there’s all kinds of restrictions on what you can’t do - MRI’s, for example…
Do I want to play that card? Pain pump - it really has been in my “bucket of last resorts”, do I want to play that card? If it’s the last one I’ve got?
What if it doesn’t help? Or the side-effects offset any benefits?
I’ve got their number. I haven’t called them back, yet. But I’ve got their number.
We’ll see.
I’ve still got the Ketamine and psychedelics route to explore more, too, if I want to.
I actually enjoyed the ketamine infusion treatments I had, that was probably the bright spot of my spring! Who doesn’t love just kicking back, relaxing, and tripping balls for a while? I mean, the disassociation from your body, even just for a little while, that was soooo nice for me…
Here’s the problem, though - as with any “mind-altering” substance, whether it’s alcohol, or ketamine, or ayahuasca trips in the Amazonian rainforest… eventually you gotta come down, back to the real world. Well, shit.
After having a little “taste of heaven”, it almost makes the real world seem even worse.
But aside from being potentially addicting too enjoyable and all, there is this science around neuroplasticity, maybe there is something to that that could help... ?
(Micro-dosing, I wonder if insurance covers that… ha!)
I do wonder what kinds of other “alternative medicines” are out there that might help, too. Lord knows I’ve given traditional medicine plenty of chances… maybe I’ll research that a little bit (of course, it might mean I have to move to a different state! Ha!)
But let’s say, I try everything available, and nothing helps significantly.
Say I’m fucked beyond repair, and I gotta live with this condition the rest of my life.
How the hell am I supposed to do that? ?@#$^?
I’m still figuring it out, honestly. Not sure I have a straight forward answer to that right now…
I do know one thing - I lean on other people a lot. For motivation. For inspiration.
Most of the time, it’s people I don’t even know, and who don’t know me. But I know a little bit about where they’ve been, or what they’re going through, and they keep getting back up, refusing to give in to total depression and despair. Refusing to “give up”.
If they can do it, get back up and not give up, I can, too. Sometimes you’ve got no other choice, right?
People like Paul Watson, whom I’ve mentioned a few times before - the dude’s got serious medical problems, and an incredible way with words. He’s looking death dead in the eye, and contemplating whether or not it’s wrong not pursue every last avenue available, no matter what the cost…
I am not suicidal. I love life.
I’m not choosing death. I’ve just decided to stop running away from it.
People like the great Jimmy Valvano - the dude’s riddled with tumors, and still has the strength, and the presence, to motivate and inspire. Like, millions of people!
I still watch his ESPY speech at least a couple of times a year, that always gets me going. (He’s got other vids on YouTube, too, they’re all good!)
I’m 63 years old now, and semi-proud to say I don’t have a spec of ink on me - never got a tattoo. Partly because there were other, more important things to spend my hard-earned nickels on, and partly because I never found anything I liked so much that I wanted to make a permanent part of my body.
That’ll change before long (probably), I’ve designed a tatt (with the help of Chat GPT!) that I plan to get soon.
What’dya think? Running down the inside of my left forearm, maybe? Nothing’s set in stone yet, maybe another heartbeat, leading into Laugh, and one following Cry? But yeah - I’ll get my first tatt, in tribute to Jimmy V.
There are people all over the place that can move you, too, just with the way they live their lives, if you pay attention.
Ever heard of Cliff Cash? He’s a comedian, and a pretty damn good one if you ask me. (A distant relative of Johnny in some way, but I don’t think Cliff sings or plays… ?)
He’s a middle-aged white dude from the South, scruffy as hell, got a comedy special where up until that point3 he was living out of his van or his mom’s house. He’d lost his house, his job, his dad, his dog, and his wife… life has not always been kind to young Cliff. And yet he still finds ways to look on the bright side of things, finds ways make something funny and laugh about it.
Side note - if you’re, like, ultra-conservative, or a proud part of MAGA, you probably want to skip this dude, he’s what we call “liberal”. Makes fun of homophobes and backwoods hicks, folks that don’t know shit about the world, ‘cause “they don’t get off their street”… (he’s got this weird thing about Mike Johnson, too… easy target, sure, but… lol.)
Anyway, in the middle of laughing his ass off at so many different things, he’s got the presence and wisdom to drop something like this - if you’ve got 90 seconds, watch from here (if you’ve got an hour and change, watch from the beginning!):
Presence. Joy. Acceptance. Change. Or Suffering. It’s up to us!
“When life gives you Lemonade, make Lemons!”4
There’s other people, too, especially now that I’ve gotten a little out of my hole, and ventured out into Socials. I still don’t have a ‘Gram (😁), but a little on Substack, a little on a few Redditt subs…
Some move me a little, just in passing. Others have moved me a lot, and keep me motivated, and inspired - giving me reason to get up, and add my tug to that rope…
I lean on people, and often they don’t even know it.
I guess that’s my goal, now - leave the world a better place each day, just by showing up.
Some days I’ll succeed, and inspire somebody myself. Probably in ways that I’ll never know.
Other days, I won’t, and that’s ok. At least I’m still trying.
As Jimmy V. said, “cancer can take away my physical abilities, but it cannot touch my mind, it cannot touch my heart, it cannot touch my soul. Don’t give up. Don’t ever give up.”
So I’ll keep writing (some folks that know me are surprised I have that talent, mustard-seed size that it is!)
Anywho, in trying to wrap this up, let me drop this here. (And turn it up! )
I do think I need to find a new hobby, though, something else to keep me occupied, this writing shit is hard… maybe I’ll give painting a try? (I’ve always been drawn to water color…)
[No, I’m not going to add a fucking “Subscribe” button. They know what to do! (12 now.)]
I’ll add a “fuck” counter to this post, just for fun. Total “fucks” in this post - 11! (if you count MF’ers. Sorry, my inner voice cusses a lot, lol.)
I know somebody that got an implant, more of a pacemaker thingy. They did not have fun.
It’s entertainment, take it all with a grain of salt… dude’s probably possibly got a mansion overlooking the Pacific somewhere?
Inside joke, love ya’ CC!
Jesus you’ve been through a lot
I try to row past the absurdity and keep the mystery in the depths of the water where it belongs. I hope you continue to stay afloat! 🚣♂️