One of the luxuries of having a skull that’s already been cracked open over eight times is there’s an EXTREME threshold standing before another decision to perform neurosurgery. I find it an immense relief that surgery is not on the menu. Don’t get me wrong, it’s disheartening when options become constrained. But at least we may always open ourselves to the counter-intuitive outcome. You wanna be a rebel and defy conventional medicine, right?!
I think my very first brain surgery, at age 14, was what could’ve been considered sort of minor. But after that first one, and you get into the cycle of MRIs, monitoring tumor formation and growth, managing crises, and still trying to aspire to all the goals you had prior to diagnosis, there’s a huge necessity to juggle timing.
Moving into more (thankfully so) mid-life patterns of dealing with a severe mutation type of NF2 presents at least one benefit: the pins and needles aren’t necessary precursors to checking in with one’s surgeon. When you’re both primarily focused on maintaining the functions that continue, then there’s mutual and reasonable expectations.
And so it goes. We’ve got some more growth and a bit of swelling. We’re gonna wean down the steroid now, and hopefully things’ll remain stable. Dexamethasone is my steroid of choice now. It does it’s duty pretty well, but the false sense of invulnerability is kind of wild. “Time/mind runs wild.” Yet all the time, it’s actually sucking up every ounce of strength and immunity you’ve got. No worries: I passively and masterfully wrangled a filling meal at Don Pablo’s out of today (from two of the world’s worst Mexican food afficionados). I may have converted them, even. Aye Caramba!
(By the way, the Honey Mustard dressing was totally superb. I appreciate the taste. I was a bit disappointed in the guacomole today, but the salsa rocked out. Did I mention steroids induce some fits of voracious eating?)
And yes, for your information, I do miss days when my talents were more than playing the role of medical marvel. I’m normal, really. Just a few anomalous adventures here and there to keep things interesting!
I’m looking forward to digging back in and elaborating on liminality. I do miss my mind. Can you imagine your brain being shifted around so much, yet still having full cognizance of what’s realistically possible?
Wild how life goes, eh? Oh yeah, baby: way to go Irish Icers 2007 CCHA Season Champions!!!
Soundtrack note on departure from hospital drive, to render ABI and music tags relevant:
Paul Simon’s Graceland CD. Total flow… (I told you I totally trip on music. And of course I’ve neglected even wearing my bionic ear this past week. Weird electrical stimulation… Wacky experimental subject!
Thanks to lingering snow down south, I could actually see the herds of deer. I usually miss roadside wildlife, some sort of tracking or focus thing. I think other people fake a lot of sightings, but whatever floats their boat…
Latenight update: polished off bit of leftover Jamie original garlic butter chicken with broccoli and racconti pasta. Fierce snack attack. Better than a restaurant dish–gotta love it when standards are bypassed! My fondness for rewarmed leftovers amuses me.
Sometimes simplicity is the best start. Going back to basics here. All’s well as long as it commences authentically.