Incremental Transformation

As much as I want to claim I’m undergoing a radical change, the truth is my corporeal mass has been deactivating certain functionalities in kind of a coin flip from osmatic renewal. Rather than enjoy a slow infusion that gradually cleanses the whole, it’s been doggedly weakening one anatomical hunk after another so as to reduce me from upright to bent over to seated.

Such is reality of chronic secondary multiple sclerosis. And while my deterioration isn’t a surprise, I just wasn’t expecting it. Like a constant drip-drip-drip of dirty water into clean, eventually, you’re not gonna wanna drink out of that bucket, but you don’t really notice until it’s really disgusting.

Don’t like that metaphor? How about: I started this poker game with piles of chips and managed to keep the competition on the win-a-few, lose-a-few-more level longer than normal, but the house, as it inevitably does, has finally gone all in to put me out of the game.

Switching to battle lingo, I threw everything I could come up with at the beast—dietary regimens (vegetarian, vegan, macrobiotic), noni juice, both liquid *gag* and capsule, cardio workouts, weight training, stretching-walking-yoga, affirmations, positive mental attitude, meditation, supplements up the yang and down the yin—but the slimeball kept stealing marches while I slept and recapturing all the territory I’d gained.

“What about prescription drugs?” you ask, as so, so many people have asked in an attempt to be helpful. Nope, sorry, not a candidate. Couldn’t find an MS Rx that didn’t negatively impact Reynaud’s, the culprit behind my excruciatingly painful, apparently near-fatal aortic spasm.

Wow, was I lucky to live through that! It’s amazing I didn’t die from iatrogenic injury when the ER doctors automatically treated my severe symptoms like a myocardial infarction and—

…oh, I didn’t go to the ER? No wonder I don’t have a paper trail. Or a death certificate..

I could be wrong about that. Only three different doctors said the same thing: “Good thing no one called nine-one-one!”

But without that paper trail and/or death certificate officially timestamping what to me was a significant plot point, who can be sure, right? So what the hell, I was still on the right side of dirt. And, as usual, I was semi-quasi-not-all-that-much better in the morning.

I’ve been reliably better in the morning for pushing on six decades. Granted, not every morning. Certainly not lately, like say, the last eight or nine annual passings.

Still, except for the optic migraines and occasional short-term blindness spurts (wait, breathe, breathe, wait, okay, there’s light… yup, I’m seeing something), all those shattered dishes (spoiler alert: Corel does break), those few eternal moments when my lungs suddenly stopped doing their in-out thing, I was sorta mostly pretty good.

Sure there were kitchen incidents at what we called the Poe House, so named for the landlord, not the author. They drove my husband nuts.

Stop dropping things! Damn it, if you fucking can’t feel your feet, quit walking around barefoot! There’s blood all over again—what the fuck did you cut yourself on now?!

I blamed the floor. It had an irrational attraction to glass and a malevolent refusal to relinquish specks and shards thereof. My feet, which felt naught but shoots of electricity, were used to being punctured, thanks to the cumulative five rusty nails I’d stepped on during kidhood, after which they went numb in self-defense. I couldn’t blame them. The blood trails stopped when we moved. Mighta been the better lighting. Mighta been my husband and daughter replacing all the glass in the kitchen with plastic.

The original diagnosis came after plowing through headaches, dizziness, blurry vision, and fatigue for time out of mind, which everyone told me was either nothing or my imagination. I was called klutzy in my pre-kindergarten years, delicate in grade school, and inept in junior high. After that, it was “oh, there’s a bug going around” or “you’re just faking it to get attention.”

Nay, nay—it was MS, all MS, all the time, shades of a weather-channel commercial. The lack of depth perception, sudden energy drops, out-of-fucking-nowhere brain fog? MS. My spine casually deciding it just couldn’t hold me up anymore, I had to sit right now? No, I wasn’t being dramatic to grab the spotlight—I was being put down by MS.

Even the sensation of wanting to lie down when I already was that I revealed to Doctor Dumbass (not his real name) was, in fact, a classic form of neurological fatigue.

Oh, was that offensive, you miserable, vomitous SOB? So was telling me I was a neurotic hypochondriac when the diagnosis—by lumbar puncture!—was right there on the medical record you ignored because you wanted to believe Trump’s self-serving lies!

… I mean my mother’s lies. Not Trump’s. Sorry, I still get them confused sometimes.

It was all fucking MS.

As I approach the sixty-eighth anniversary of my fan-shit collision, I’ve gotta give myself credit for hangin’ in so long. Annette Funicello didn’t make it this far; she followed doctor’s orders and died. So did Terry Garr, the pianist with the great left hand, and pretty much all the people I met in the support groups I went to.

Only one each. Everyone was singing the same two tunes, either “Poor, Poor, Pitiful Me,” or “I Want a New Drug.”

All that said, I can’t help but notice that I’m regaining a few energy spoons the longer I don’t try to stay on my feet to get things done, like sweep or wash floors. I used to wash my bathroom floor with a mop. Then I dropped a few Clorox sheets and mushed them around with my feet. When my balance said no, I used my cane or a reacher grabby thing. Now I’m just looking past the filth, like a truck-stop waitress who’s impervious to gestures or polite calls.

I once held my coffee cup on my head in an attempt to get a refill. When that didn’t work, I swung it through the air yelling, “Yo!” Lots of kids are embarrassed by their parents simply because, well, they’re kids. I gave mine damn good reasons to be mortified.

‘Tis a mystery why she moved so far away….

Plus, absolving my mother/myself last month rendered her blissfully distant, so ♪ every day, my calm is a gettin’ stronger ♫, I’m sleeping better, thinking clearer, and just letting it whirl lots more. The better to redirect my energy, my dear.

But *gasp* what about Ghostwriters Professional Designation Program?! What about Wambtac Ghostwriters???

Oh, please… doest thou imagine I’ve been reconfiguring, revamping, and relaunching all by my lonesome? Hast thou already forgotten about Kata? Liv? Evelyn? Ben? Not to mention the plethora of SBDC consultants, paid advisors, and threesome of cuddle-demanders?

We’re slithering onward, as always, tasks redelegated, responsibilities redistributed, visions reimagined. Montel Williams, who’s three years younger than me but didn’t get the scourge until thirty years later, is hanging in with cannabis (I stick with CBD). No competition implied but still… boys will be boys, ya know?

He claims if he ever does land in a wheelchair, he’ll be faster than anyone else.

Knowing me, I’ll probably get more done from a wheelchair than I have from a desk. And if not today, well… I’ll be better in the morning.