please welcome the fifth member

Anything’s possible, right?

 

What’s your favorite color, baby?”

Or, alternatively, what color were you wearing on November 4, 2008?

I was wearing purple. I don’t know if that blog post of mine is still just a draft, or if I finally posted it, but I thought of the gist of it again: Purple nation.

I have a new lucky shirt. And I am actively reclaiming an irreducible entity.

If you want others to be happy, practice compassion. If you want to be happy, practice compassion. ~ Dalai Lama

And the load in the dryer’s done.

 

right here, right now: i feel alive

From an hour or so ago: “I should be taping this.”

“Oh wait, who uses tapes anymore?”

“Let’s, let’s, let’s have a ball…”

And segue into we’ve only just begun.

ultraviolet

 

hold the line

Right guard*.

(Not just deodorant, but also the classic stand-up routine with guy decked out in shouder pads.And now nephew A)

 

“Your mom threw away your best ottoman.”

Here I figured I was pretty crafty to know what an ottoman was, way back when ‘LtI’ was at its peak. (I think I was in 4th grade at the time.) I am still chuckling at myself–there was a time when I laboriously transcribed the lyrics to several noteworthy songs. (This was when Commodore 64s were novelties–the start of computer classes in school for playing Lemonade and such, and the notion that lyrics sites would exist one day would’ve come across in the same way as the perpetual claim that X disease will be cured in 5 years (even 15 years after the initial prognostication).)

Included in that manual transcribing phase was one ditty that left me amused at the prospect of not wanting to go to school, and then not having an ottoman to rest one’s feet on if skipping school–what a waste that would be. Needless to say, I was reminded tonight about how inaccurate my lyrical understanding always was in the absence of published lyrics. Um, at least I’m self-correcting now? I think there was a moment when I saw the actual lyrics, and consciously decided my version was funnier and catchier.

 

it’s no secret

“In the end, social movements carry the day, not rock stars.”

– Bono, Rolling Stone Magazine interview, 2007

 

What’s the frequency?

It’s time for an interactive component here. In honor of a pending ABI update post:

I’ve only been to each of these once in my lifetime, so far, but the visits were of greater significance than one would expect from food joints priced under $5. Back in the days…

I can’t see a commercial for Sonic car-hop style restaurants without thinking of a certain song. Name it.

Then we’ve got the slightest thought of Taco Cabana eliciting a tune that spans several generations. Gee, what could it be?!

 

duct tape and water

She said she needed to run home and change between work and the performance because her colored pants might lead her to be “mistaken for a stage hand.” She opted for black.

Just before the start of the show, a couple dudes came out to do mic checks, place water bottles, and other last-minute things. They looked a lot like her in that they were wearing all black.

This was my first live musical event since reactivation of my ABI. Great act!!!

(This is part 1 in a series, but I have no idea how many parts it’ll have. “Parts is parts.”)

 

Kodachrome

is coloring my vision. And running in my head, of course!

“Oh sunny day, oh yeah…..”

checking out my photographs

 

Dad just offered me coffee

The last time I had coffee was probably when I was six. Could only stand the taste of it with lots of sugar and some milk in it. I’m thankful I never attempted to aquire a strong preferential taste for it, to blend in more.

My folks are tough workers who have a healthy history of third-shift labor hour tendencies. (Mom’s not q morning person, but Dad doesn’t let midnight oil or daylight burn, vacation/weekend or not–even though I claimed he was sleeping yesterday while I was up with the boys, he was actually out having breakfast with his buddies…)

Anyhow, they love their coffee. I don’t have to care for the taste to be fine tolerating the smell, and even appreciating it for the mood and performance-enhancing effect it has on them. That took time, too. (I don’t pity them for their dependence anymore. Everyone can appreciate the social significance of coffee, aftall!)

In any case, I don’t need to be awake to be wakeful right now. So it was with some deviousness that my dad encouraged exploring a coffee high at this moment.

The voice in my head is speaking at a steady, relaxed pace. So even though one may label this a hyper state of mental and physical acitvity, there’s a meter to it. And since I’m in the moment, I feel secure I’ve been getting rest at each of my intermittent stints lying down.

It’s very cool to be able to keep one’s cool.

And you know that takes me back to the junior high, “Patience,” anecdote. Thanks Axl! I used to be able to whistle the interlude part perfectly, before my lips weakened. Of course, they’ve come back more than I ever expected, and I have the memories (and sensations) of what such sweet whistling–and playing my baritone saxophone–so that’s plenty for me now! So mellow. Like Mellow Yellow (which I never drank much of).

Oh yeah, part of my switch to Cherry 7Up recently is because I’m aware it’s caffeine-free. I’ve also been drinking water. Before that, I was in the Pepper zone, of course.

 

Defining the situation

I just wanted to make the research note here about how manifestly, yet fluidly, I’m engaged in defining each situation here. I am not surrounded by anyone placing expectations on me based on any prior conventional assumptions, and I’ve had ample experiences in everyday life to explore that whole, “just being,” bit. You know, where you’re acting, with effortless action. Loving the way you move, even when you’re, “falling off the sidewalk,” and well aware observers may impute stigmatizing social attributes and whatnot. But with time, even with the crooked face, hunched shoulders, facial ticks, and whatever else, you find your groove. (Of course a land near a Golden Dome sets a great ambiance for that sort of stuff. And how about those chance encounters and sightings with Fr. Hesburgh himself, at the World’s Greatest Library?! The positioning of others on the same level as oneself. Beautiful stuff. And everyone has the freedom to do the same on various levels. Go ahead–try it.)

Generate the unexpected. Experiment!

See what comes back. Interaction effects are so cool!

And yeah, U2 Rocks! Achtung, Baby!

 

“fire in the hole!”

The day started with omelets. Pictorial documentation’s imminent. I’m on the cusp of the 21st Century in one respect at least. Text is alright for this moment, right?

I’ve been on an activity drive since the flurried excitement of a morning allowing the Grands to rest while I engaged in the wonderful exercise of communication and bigtime planning with nephews C and D. What a great gig!

And my mind’s been cranking out the juice all day.

This is so surreal! I’m even gonna copy and paste some contemporaneous, same-day writings. I haven’t been this bold about revealing some of the raw innerworkings of my mind for well over a decade.

INXS just kicked in for the internal jukebox. So taste it, maybe:

New Sensation.

Are you feeling so good because you got an optimistic report from the doc?

No! LOL this is all on my head, just like my tons of tumors and all. I’ve NEVER been one to feel a way because it’s what’s expected. Always exploring what my body and mind might have to offer. Or at least that’s what I’ve always tried. Sometimes things click. Mysterious and grand!

Jamie

“I am totally in a Zen, present moment cycle here. Very similar to my recovery after extreme brain stem-shifting tumor removal of Summer 1998, that defied expectations and catapulted me into grad school and stuff. I am very much enjoying the ride. The level of clarity is astounding! It’s likely I’ll have a few manuscripts out of all this! LOL!!!

I love creativity. Man did I miss my brain there!!! It’s like a long lost friend is back.

What a ride! Lots of good music in my head!

Jamie”

Subject: More Research — mutated to Jamie Shifting the Paradigm

(Belated note: I was replying to something, that was being discussed in the conventional ways of clinical trial research enterprises, but had missed the context until I was well into elaborating on what had already commenced in my mind. It’s been good to have a sense of how the wheels turn from different ends of the crankshaft.)

I don’t want to freak anyone out on the Crew, or alienate folks with my inspired musings, but it’s entertaining me to see what’s coming out here. I’m highly self-regulating here, so I’m in control and you should not be worried. I’m just sharing this, if you feel like the read. :) As I said, though, I shifted the original context.)

Yeah, we’ll see how things go! It’s like I’m on a personal clinical trial of my own design!!! Of course the absolute best thing would be for whatever to translate into some use for other people. For the moment, I’m embracing all these really cool perspectives. And enjoying moving all over, too. Cleaning, showering, cooking, and taking care of/playing with nephews has been effortless. Pure joy: you have no idea, perhaps. (I know you guys haven’t been aware of my chronic problems because I just kind of endure stuff and get by, but I know there are people who can relate to the degree of effort put into each and every, everyday thing, that builds up for chronically and progressively ill individuals that does exist experientially.) (Though maybe we’ll get some fluidity and reversibility here, like you observe in collective behavior contagion models.)

Right now, though, it’s like I’m a little energy rich kid again. But with greater skill. And I hope it’s contagious! Very cool that we may biologically possess the power to retain that perceptual memory, and can perhaps draw on it when we fall into a vulnerable state, despite the bulks of tumors in our bodies, or controlling if or how rapidly they may grow. My body is functioning at optimal pace, and I’m tuned into the perfect balance of the past, present, and future. Simultaneously! Perfection! In ways, the world’s a state of mind, but it’s reciprocally conditioned by biological constraints. And we gotta respect those. Life and creation is so beautifully complex and elegant. What an elusive power, though, in the things that we can’t willfully force. Hope, yes. But what comes… It is most up to us to remain receptive. What are you building for yourself and others?

Benevolence.

————–

I’m on this wavelength out here. I started this theory stuff as part of formal studies, too, and it’s coming back via another round of lived experience, which is pretty exciting. Science requires repetition and replication. I’m getting a repetition of a local phenomenon (many levels and scales over the years, actually: training, practice). And then I see how my repeated individual experiences open an area that may universalize the possibility for others (any human being: we’re all vulnerable to threats to basic life-sustaining processes). Man this moves even beyond Irv Zola! How awesome! The synthesis of the biological and the social. All those beautiful connections and links!

My mind is organizing stuff internally, yet I’m not getting all bogged down in fretting about whether it’s gonna be possible to convey it in a form comprehensible to others because right now it’s about laying the blueprint for me and enjoying my current ride. Awareness. I’m extensively aware of the context I haven’t been able to provide yet for all this. (As well as some explication of prior philiosophers and humanists.) There’s tons. And it’s falling in the “manageable,” and “doable,” column once again. The opportunity to pursue such a wild living experiment. The bionic, the effects of technology that’s been integrated in my very being. Brainstem as body’s regulatory control center, and what’s with mine and the effect that the ABI has had, especially in light of having to withstand repeated mass damage and scar tissue–but what ameliorative effect has the electrical stimulation and phenomena of alternative auditory-sensation-production contribute as to enhancing functional capacity? Vast potential, even in the face of infinite variables, perhaps.

I know I have the capacity again to communicate all the subtle intricacies of what I’ve learned, through living in such vibrant and diverse spheres of experience. Of course, that was all socially generated. I guess I’m lifting that veil between the Private and Public spheres, or something like that.

Things are what they are. In the moment.

——
OK, so steroid weaning is still satisfactory. I have been riding a great natural endorphin high, or whatever. The contrast to chronic pain makes it that much more enjoyable. And I’m into reintegrating here. Very even-keeled about everything. Optimal healing environment.

Good drama and it’s free.

 

“You do a little dance and then you drink a little water.”

Feels and tastes great!!!

I feel like an accomplished gymnast when I rise to my feet. It cracks me up. I was the kid that had trouble touching her toes without bending her knees… Sticking landings? Not so great back then, so good thing the smile was always on, if internally uncertain! (I did consider myself a stocky sort of kid… Kind of disproportionately small midsection to accommodate all my potato chip guts.)

Don’t worry now: I don’t do things in ways that bug people here. At least I don’t think I’m happy-in-an-irritating way. That’s good. People don’t always know how to deal with too much happiness. I’m a good influence, I swear. And not boring. I’m flying high, but refrain from anything that would irritate others. I’ve got this multi-perceptual and perspectival sense of my body and mind. Peace, contentment, absence of pain. The stark contrast from what’s been my baseline for months, if not years. Save for a few days in there. There’s something to be said for variety again. Better than any synthesized drug. I love it when my body steps up. Taking nothing for granted. Definitely milking it all here. Great to see in true colors. Time after time. The mental soundtrack. Mellow, in synch. I’m not a singer, but my voice is beautiful for the purpose.

It’s nice to have my internal orchestra back. That got me through the roughest parts. I think I camouflaged things pretty well. I’m good at that experince thing. Sometimes I forget, but it’s nice to have circuits functioning now that allow me to remember. (Amazing stuff–brains and minds so FASCINATING!!!) Didn’t mean to be deceptive or secretive or what-not, but why go around insisting everything’s a big whoop? Jamie’s just around to maybe benignly (like her tumors, eh?), and even surreptitiously, bring out the substance that makes folks feel good about themselves, precisely so they reflect it towards others, and remain receptive to receive more. Reciprocal affirmations. Simple stuff. Merging of mind, self, and society. You get it, right?

“See it and be it!” Whoahahahahahaaa! Hilarious!

And yeah, you may characterize a bit here, as in a state-of-being of mania, but it’s more a healthful state. When I was a kid, my constitution was like this. I always thought it was normal. I did have mean and rebellious streaks in there. It takes all kinds. Toughens you up. It’s good to be able to stick up for yourself without feeling a necessity to knock others down. Best lesson ever instilled in me. My parents should’ve raised the world. ‘Course I still have the core of striving. That’s creation and purpose, meaning. Life-sustaining processes. Evolution. Sometimes things play out. But how to react. To have that power to react. To have successive momentary opportunities to make decisions. And to ensure others have equal access. How does that spread through humanity, so that we all equally respect the humanness in all others?

I love creating that sort of space for people.

 

“Pump Up the Jam!”*

I woke up with that song title melody ringing grandly in my brain. Sweet comfort! How can you not feel good when you’re awakened by motivations to get your booty on the floor tonight? And making days, and welcoming others to make yours?! (I’m not in some corny mood here. It’s a combination of a bit of optimistically-leaning anxiety that steroid weaning goes well, and yet being rationale enough to stave off extreme impulses. It’s a dance. Iterations of pushing limits a bit, extending capacities, and then retreating to regroup. Hopefully getting a bit further each time, without enduring slides back. That’s the now. The next couple weeks, perhaps. I’m cool with it now because there’s more meaning to be generated: a woman with a plan.

* I am sure some sort of divine intervention has a role here: the internal electrical pathways essential for lithe movements to successfully rise from the air mattress I’m sleeping on are optimally activated such that I feel no stress upon rising. Awesome! Again, I’m just getting out of the way of my body. It’s nice when that works!

I need to generate some funnies. A lot of funnies. I don’t have my tools at hand right now. Hmmm…

So what’s the weirdest thing that’s gone through your mind lately? Any good dreams?! Do more things seem possible to you now than they did five days ago? The way things add up… always surprising me. Hey, I never claimed to know what I was doing!

 

midweek update

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.