Anybody else ever do that, in real life? āKick a canā? Haha. I remember, when I was in grade school, waiting on the sidewalk for the school bus to arrive (yes, they were big, and they were yellow, and they are real!), my friends and I would take an empty soda can, and crush it down into as circular a puck as we could, and weād play some variation of soccer until the bus cameā¦
Yeah, that seems like forever ago.
But now? Now, itās a different kind a can, and I guess itās time for me to stop kicking it down the sidewalkā¦
Iāve put this off, ācause I really donāt like talking about myself, and reliving some of that stuff isnāt a whole lot of fun, and itās not something Iād consider others would find very fun, or funny, or entertaining.
But if telling my story helps even one person get through their own struggles, whatever theyāre dealing with, then I guess itās worthwhile. (My therapist suggested āIām obligatedā, lol. I knew she was right when she said it, but god damn! Did she have to say it out loud? Lol!)
So anyway, I figured anybody that doesnāt give a EFF has already bailed, scrolled past, and I donāt blame them. Thatās the way the world works now days, right? Scroll past all the clutter, past all the noise, till something catches our eye.
This isnāt that much fun, too long, last chance, go find something betterā¦
Still reading? Ok, letās get this party started!
Iād mentioned before that Iāve been ājournalingā some of my medical adventures this year, going back to the Holidays. Iāve had quite the first half of 2026, what with all the doctorās visits, and procedures and trials. Off-and-on, Iāve tried to chronical some of that, and document the results, for better or worse. Not necessarily with the specific intent of writing something to publish, more to just get it down, to get it outā¦
Mostly itās notes and rambles, stuck in my ādraftsā folder. Iāve been meaning to go back and consolidate a few, and polish it up, maybe try and find something worthy of sharingā¦
Thatās been my ācanā, I keep kicking it down the road. Maybe itās time to do something about thatā¦
Butā¦ stepping back, and reviewing what Iāve got and looking at the big picture, I think, so far, somethingās missing here - proper context. Before we get in to any of the latest nitty gritty in my ongoing ārage against the painā, letās step back, and let me give you a better picture of exactly what Iāve been through the past 5 1/2 years, how I got here, and what my current day-to-day looks like.
Since itās already TL;DR1, let me break it up into 3 āchaptersā (each a separate post):
Chapter 1: Context - how I got here, and what my current day-to-day looks like.
Chapter 2: Content - my first half of ā26.
Chapter 3: Consequences - what it all means, and where
the EFFwe go from here.
Chapter 1: Context
Letās go back to late 2019, Iām a 56 year old reasonably healthy male thatās starting to feel my miles. Iāve got aches and pains, as a lot of people that age do - my shoulder hurts if I lay the wrong way, and my elbow, god help me if I tried to throw a ball any more. Hips and knees, too, Iām feeling it. It can suck, this getting old(er) shit.
But the thing that finally moved me to go see a doctor was my back. It was just getting to the point where it was hard to do just about anything - we had a faucet leak, for example, and getting down under the counter to check the pipes?2
God help me.
The tipping point? Sex, lol. When the pain becomes so bad that you have to stop and mentally have a āpain vs. pleasureā debate? Yeah, thatāll drive even the strongest man to see a doc!
So, I find one of the top back/spine specialists around, and in early 2020 I go see a specialist. They start conservatively at first (of course) - physical therapy, anti-inflammatories, etc., with no significant improvement.
āDegenerative Disc Diseaseā, they call it. Not uncommon at all for a man my age (and miles).
Eventually we decide on surgery. Not something minor, either, weāre talking full 3603 disc replacement, L4 & L5.
Itās June by now, and oh yeah, did I mention that coincidentally a GD pandemic decided to break out? Now weāre having to deal with all that hoopla, too! Fun times to be around hospitals!
Anyway, late June, 2020, I get the disc replacement surgery and thatās not fun, but everythingās going about as well as can be expected. I was in normal post-op pain after a procedure like that, but I was getting around, I was walking the next day, back home within a week, I was progressing quiet well, actually.
So well, in fact, that in early August, 2020, my wife and I could board a plane - in the middle of the pandemic - and fly out to Georgia, where our son in the Army was getting a promotion.
I was moving slow, understandably, but I was able to get around - we toured a little bit of Savannah, walked around downtown, walked on the beach a bitā¦ I was still recuperating from the disc replacement (too early to tell how much it helped the original pain), but I was functional - I certainly wasnāt in crippling pain 24x7! I was getting by!
Enter late August, 2020. Weāre back at home, and Iām piddling around, working during the week, relaxing on the weekends, doing my super-exciting āDuanerā things, whenā¦
When all of a sudden, over the course of a weekend, I completely lose strength in my legs! I mean, I could barely get off the couch!
Itās weird, when something you donāt even think about, something you take for granted - like pushing off to stand up - when all of a sudden you have to go through the motions - I know my brain is sending signals to my legs to do their thing - and nothing happensā¦
Itās unsettling as hell, you know? āLegs? Hello legs, are you there? Comāon man, whatās wrong with you guys?ā
Finally, Monday rolls around, and things arenāt any better, so my wife somehow manages to get me loaded into the car, and we drive to the hospital.
X-rays are the first order of business, and it didnāt take them long to find the problem.
A low-grade glioma, aka intra-axial spinal cord tumor, T1-T2 (according to the pathology report).
Well fuck, I guess that explains things!
I remember, they showed me the X-ray (and I snapped a pic!), and told me āweāre doing surgery asapā. No real discussing what the options are, or what the prognosis is, no discussing pros and cons of different treatment pathsā¦
Nope. None of that. Just āweāre doing surgery asapā. (Iām sure I would have opted for that anyway, I mean it seems like the most logical course of action, right? But in hindsight, knowing what surgery would mean, I wonder if just radiation (and/or chemo?) could have gotten me back on my feet without having to take a knife to my fucking spinal cord!)
So yeah - August 27, 2020. A date that will live with me forever. There was ālife beforeā - with all the hopes and dreams of everything Iād worked my entire life towardā¦
And then there was ālife afterā.
Everything before? That script I was following, that carefully crafted screenplay on how the rest of my life was supposed to play out? āNah. Forget that dream, you can wad that up and Michael-Jordan that shit straight into the trashcan. We got different plans for youā, say the fickle whims of Fate.
Now, Iām not about to get into the immediate aftermath of the surgery, or what the recovery process was like - we donāt have the time nor the space to get into that now4, but suffice it to say it was rough. I was in a rehab hospital for 6+ weeks, relearning how to just stand again, wondering if it was even possible.
I did 2 months of radiation, 5 days a week, I was in a wheelchair for 8+ monthsā¦
The pain was 24x7. I could barely move. It wasā¦ rough.
I will say, I was pretty heavily medicated, I was on heavy narcotics for the first 4.5 years - oxy twice a day, with morphine at bedtime.
It certainly helped with the pain, but doesnāt really ākillā it by any means. Does a good job of numbing it, though!
By the time I got out of the rehab hospital (a really fun place to be! Yāall, there are some really old people in there. Ex: we had to due some type of therapy twice a day (except Sundays!), right? Always Physical Therapy, and then something else, like combing your hair or tying your shoes or something, I donāt remember. I do remember, tho, doing PT, weād often do arm curls, with small weights, anywhere from 2-5 pounds. It was just āexerciseā for me, my upper body was fine (I always went with the 5ās). Anyway, weād sit around in chairs in a circle with the nurse, a half-dozen patients or so, and do these sets of arm curlsā¦ a lot of times there would be a patient or two - they had to be in their 90ās at least, God Bless āem - who didnāt use dumbbells - they used paper towel cardboard tubes!)ā¦
(Rehab. Yeah. Memoriesā¦ š)
ā¦ so anyway, it was a good 6 weeks, but by the time I got out of rehab, I could at least push off and stand on my own. I was still in a wheelchair, but I could lock those brakes and, using mainly my arms, I could push myself up and stand.
Actual walking, on my own, would take months and months of more therapy - I remember a nurse would come to our home, and sheād put a big strap around my chest, and weād walk around the island in the kitchen or down the hall a short bit, me holding the countertop or couch.
No, for a good 8 months my only transportation was a wheelchair and a āslide boardā. Iād wheel close to wherever I wanted to go - couch, table, car seat, toilet, etc. - and bridge the gap with my slide board, and drag my hairy ass5 over to wherever I needed to be. Fun!
I remember, around Christmas timeā¦ Diane and I, she got me loaded up in the car, and we went over to my momās house - other family was there for the holidays - and we roll in and join the rest of the family, and I do my āstand upā trick - I wave at everybody and lock the brakes and, you know, stand up - just to show everyone, you know, guess what? ā¦ everythingās fine. I got smiles, they were happy to see Iām making progress!
I remember, too, in that moment, insideā¦ I donāt think Iāve ever felt more dead in my life.
So yeah, slowly I do start to recover, to an extent. I remember, the first time I got up from the kitchen table, and walked my dirty plate over to the sink by myself (weāll say it was around Valentineās Day. Not sure exactly, to be honest)ā¦ my wife was standing there, and I remember she looked at me like I had a spider on my forehead or something, lol!
Eventually, I could walk on my own again, even just short distances, that was so liberating. And driving on my own, omgā¦ I remember the first time I drove myself, it was to the dentist, ācause I had a crown that decided to stop crowning, and Diane had important work commitments.
It was to the dentist, but I was elated. So much so, I created my very first ever MEME, a background of a gorgeous sunset (that I took myself!), with something about āDentist - best day of my fucking lifeā, and made my one and only ever post on Facebook. Lol.
Driving isnāt without issue (when you canāt feel your legs! š¤£), and Iāll touch on that later, by hey! I can walk (!), I can drive (!), I may never quite be 100% again, but slowly Iāll keep getting better and better, right?
Right?
Yeah, the first year, especially, was pretty rough. Healing from the surgery, learning to walk again, getting back in the car... I did get better in some respects, but to be clear, a year out from my surgery (and pretty much to this day) - from the chest down, I still had/have:
numbness and tingling all the way down to my toes - I have āfeelingā in my legs (if you stabbed me with a knife, I would know!), butā¦ I canāt feel my legs.
my whole digestive system is a mess - somebody (nurse, doc, I donāt remember) told me once āour digestive system is one of the most painful processes in the human body, we just learn to ignore it as a babyā. I have no reason to doubt that, I mean when youāre really, really hungry, that can be down right painful, right? And me, with my wires getting crossed up and all - I feel shit my mind never learned to ignore!
pain in my lower back 24x7. And god help me if and when I have to move. The closest way I can explain it is in āelectrical termsāā¦ say you have two hot wires that are short-circuiting - at rest, theyāre just close enough that they create an electrical āhumā. Always present, annoying AF, but itās not earth-shattering. Move just a little, and the wires touch - sparks and fireworks. Yikes!
Early on, gastroparesis was my biggest nemesis - everything from the chest down is already EFFāed up, and throw the painkillers on top of thatā¦? My digestive system, ugh.
I started keeping track, in Google Calendar, in April 2022, of the days I would actually get sick to my stomachā¦ not the days I was nauseous as fuck, because that would be every dayā¦ but the days I actually threw upā¦
Too many days, curled up on the couch, clutching a trashcan.
I finally gave up the painkillers (the narcotics, anyway) in December, 2024. Just got sick and tired of that trashcan. One night I was so sick I forgot to take my nightly pain pill, and I wasnāt any worse the next dayā¦ the pills werenāt really helping the pain, and if I can just skip it, and not feel any worseā¦
What the fuck, what have I got to lose. I knew withdrawals would be a bitch6, but what the hell, letās āraw dogā this thing for a while, see how it goesā¦
No regrets. āRed circleā days are rare these days.
So, thatās a little bit of how I got here and what I went through, but the context I really want to set is - where Iām at today.
What I have to deal with, what I still struggle with, why Iām constantly chasing some doctor with a magical cure.
As I mentioned earlier, everything from the chest down is numb. Classic neuropathy from the nerve damage. The further down you go the worse it gets - my legs burn constantly7, and when it really flares up, it feels like needles are shooting out of my toes. Not comfortable! But itās bearable, to be honest.
Fortunately, the gastroparesis has been a lot better since quitting the painkillers. I still deal with frequent nausea (as fun as it may be, gas is not our friend!), I know the neuropathy effects my entire digestive system, but itās not nearly as bad as before - Iāve only thrown up twice since quitting the narcs (and that could have been some random bug I picked up?). Much improvement.
Iāve got some ānebulousā side effects, too - sometimes the room spins a little, and my balance is so bad it feels like Iām going to fall off my shoes. I donāt do well with anything thatās not a smooth, level surface. And closing my eyes? Iāll fall over in a matter of seconds. I lean against the wall in the shower when I wash my hair, just so I donāt fall over, lol.
Temperature perceptions are different, too, it always feels like Iām cold when the rest of the room is fine.
And spicey food? Ha! This is weird - if I eat anything even slightly spicey, my whole body will instantly start to sweat. And by āslightly spiceyā, I mean even slight! Like BBQ sauce, or pepperoni pizza (?!?) - my head is almost immediately covered in a glaze of sweat! Mexican food (ā¤ļø) can be an adventure, for sure! I still eat what I want (sweat be damned!), but I do go light on the hot stuff. (And keep napkins handy!)
But the real crux of my problems these days is still my back.
Even resting, and in my most relaxed state, without moving, Iām in pain. 24x7. Resting, without moving, itās bearable, like a 2 or a 3 on the ā1-10 pain scaleā8.
The real fun starts when I have to move - get off the couch, or out of a chair, to go to the bathroom, or the kitchen for somethingā¦
If Iām in the other room, my family knows when Iām coming, because they can hear the grunts and moans, as I simply get the fuck up.
When I move, for anything, the normal ā3-levelā pain while resting immediately shoots up to 5, my whole lower back feels like it tightens up, into the most intense muscle cramp you can imagine, gripping my lumbar like a stab from a knife. (A rather large knife.)
I can manage short trips, to the bathroom, or to let the puppy dogs out. But the more I do, and the longer I stand, the more the pain just keeps ratcheting up. And up. 5 goes to 6ā¦ Iām still standing, got stuff to do, butā¦ 6 goes to 7ā¦ āGod, I can barely move, please find me a place to sit downāā¦ it gets pretty unbearable pretty quickly.
Let me walk you through, from my perspective, what itās like to do something simple and relatively normal - sayā¦ go to a doctorās appointment. (Same applies to anything I do - want to go out to eat? See a movie? Got some shopping to do? Same shit. And it sucks.)
So, say Iāve got a doctors appt. - 2:00, Dr. Swagnami or somethingā¦
First order of business - get up and get a shower!
Do know how much bending, and twisting, and reaching goes on in a shower? (Iām sure you do, because I assume you shower, too, but I bet youāve never thought about it!)
And the standing, oh my god. Showers are torture for me, by the time Iām done, and get dried off, Iām in so much pain. 6, if not 7, for sure. Now Iāve got to fucking get dressed, oh my godā¦
But thatās just getting ready, the next order of business - getting into the fucking (Iām going to try not to cuss so much, this is gonna be hard, lol) car! I can handle the actual driving part, itās the getting in and out that kills me. Getting into the car - you have to open the door, and then youāve got to simultaneously twist and lower yourself down (I drive a medium-size sedan) and then sideways to get in your seat, and then twist again to get yourself orientedā¦
Every getting-in-and-out of a car is guaranteed to include very loud, involuntary grunts, groans, and moans from this customer. The pain isā¦ intense.
[Edit: I know I said āI can handle the actual driving partā, but let me clarifyā¦ my arms are fine, steering is the same, I can work my blinkers, etc.
That part I can handle, itās the ālegsā part, thatās actually a little tricky. Accelerating is easy, you just press until you get up to the desired speed. Itās the brakingā¦ when you canāt āfeelā your legsā¦ yeah.
First of all, the stakes are higher - you need to slow down thousands of pounds of heavy metal, and if you fuck it up real damage can be done!
Iām always afraid Iāll miss the brake pedal, or my foot will slide off at the wrong time.
And getting the pressure right, when you canāt feel your foot? Itās a GD adventure is what it is! Not enough pressure, and you donāt slow down enough in time, and caābamy! Too much pressure, and you jerk yourself (and passengers) in a āwtfā moment.
Fun stuff, but my wife has gotten used to it. Lol. I leave plenty of space between cars around me, and I start slowing down, gradually, way before I need to. I drive like a damn grandma, if you want to know the truth.
Hereās the thing about the driving part, tho, besides the in-and-out, and the brakingā¦ I feel every bump, every dip, every turn - I feel it in my back. Every little vibration, itās like another twist in that knife thatās sticking out of my back. Perfectly smooth road, and Iām ok. But how many roads are perfectly smooth? Even āgood roadsā have dips, and ups, and downs.
Just the slight G-force generated by turning a cornerā¦ just turning a fucking corner, is excruciating for me. š©
But yes. I can handle the actual driving. Lol.]
But now weāre here, at the doctorās office. I get out of the car, and Iāve got to tackle the parking lot. Some offices arenāt too bad, theyāre not overcrowded, and I can get a handicapped spot up close. The walk is still painful, but I can make it.
Other offices might be attached to a busy hospital, where handicapped parking is always full, and most of the rest of the massive parking lot is, too.
Iāve got one doctor like that, I always have to park at the back of a large hospital parking lot, and walk all the way in, up the elevator, and then his office is at the far corner of the building (because of course!)ā¦ itās got to be a mile from car to reception area, and by the time I get there, Iām at a 7+.
I always laugh, one of the first questions the nurses will always ask is āWhatās your pain level today?ā, and I have to say āWell, itās a 6 or 7 at the moment, but thatās because of the trek it took to get here!ā (Theyāll usually take my blood pressure, tooā¦ for the first 30 minutes or so after getting there, itās usually 175-180 over something, something. š² It comes back down with time.)
Then I see the doc, he clicks some boxes and takes some notes, and then when weāre done I get to reverse the process - walk out of the office and across the parking lot, into the car and eventually back home.
It seems simple, but for me itās brutal. Absolutely brutal.
I can handle the neuropathy, and the gastroparesis is not nearly as bad as it used to be, but the back painā¦ the mother fucking pain. Itās crippling, it really is.
So yeah. Iāll share some of my more recent adventures with various doctors (and results) next, but itāll be 6 years in a couple months now, andā¦ Iām still searching.
Howās that for context, yeh?
Cheers, yāall! Peace, love. Laugh, Think, Cry. (But not too much, your eyes will get puffy!)
Seriously, too long - without breaking it up, Substack is telling me this ramble āmay be truncated in some email clientsā. lol.
Hey, I can plumb! Not a pro or anything, but I can plumb. :)
They call it ā360ā ācause they go in through both the front and back. Nice.
Maybe Iāll get to some of that one day, it was crazy. Dark days, tho, not in a hurry to relive that!
My ass is smooth as a babyās bottom, btw. š
And boy, were they! I can see why rock stars retreat to some resort in Antigua or something, itās not fun. But honestly, in the week+ I was going through it - I weaned myself off semi-gradually, Iād cut my dose in half, go a couple days, then cut it in half again, etc. - sure I was sick as a dog, but I kept thinking to myself ācomāon, narcotics, is that all you got? This isnāt any worse than one of those nausea attacks I have to fight through all the fucking time!ā. It was rough, but I got through it. (I donāt want to say āit wasnāt that hardā, butā¦ it wasnāt that hard.)
I can usually wear shorts in the summertime, but in the winter, I wear pajama pants everywhere - denim is too rough on my legs to wear jeans! (god, I love pajama pants! :)
I always have to laugh when talking about the scale, everybody perceives their pain differently. I try and be conservative - 3-4 will get anybodyās attention, 5-7 is serious pain, 8 is āget me to the hospitalāā¦ Iāve only experienced 9 once - I hallucinated floating over a sea of lavaā¦ ha! (gall bladder infection, almost septic).
I reserve 10 for the ladies giving birth to 18 pound babies. Never been there.
I laughed out loud once when I overheard a lady at a regular doctors office say she was at ā10ā, 10, really? lol