“Holy Cow!”

“One guy is even thinking about putting a skybox up there. Can you believe that?” Quigley said at the time.

You should read this.

 

What’s Important Now

“WIN”

That was the take-home acronym from his* visit to the basement of Lewis Hall, early in my undergraduate years at Notre Dame.

Thanks for all the memories, Lou, and for your continued brand of humor!

As an incidental note, John Cooper was the OSU QB when my trusty neurosurgeon, Dr. Robert L. Campbell, was attending The Ohio State University.

And Bonus photo:

* View linked story prior to May 9, 2008; courtesy of South Bend Tribune.

 

“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.

 

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.

 

The Flight of Gandalf, revisited

I was trying to figure out, aside from jackhammers working from inside my skull, how to describe today’s headache. It is reminiscent of kettle drums, but not in the sense of calm tympanies… No, this is at the climax of a grand, energetic movement. Only it’s not so grand after the conversion from triumph and exhilaration like the original score, to what amounts to a constant banging against my precious brain.

I still have not decided whether I prefer the constant pain like this, which I should eventually become accustomed to, and raise tolerance level still more. Or if the unpredictable, intermittent-though very sharp stabs allow me a better cushion to function.

These are the kind of days that slip and slide. But it’s like the homemade slip-and-slide we had as kids: the one my sister broke her thumb on because it got caught in an undetected hole in the tarp.

 

Baby Please Come Home…

Next to the original Mannheim Steamroller Christmas album, and the now defunct, (Disney) Christmas Sing-A-Long Cassette, stands (the original) A Very Special Christmas as my all-time, never-get-sick-of*, collection of holiday favorites. (Before those, in the Age of 8-tracks, there was a great set of Dolly and Kenny singing the classics, but obviously my tastes have matured greatly since then.)

* Given, it’s true that I rarely get sick of enduring favorites, precisely because they are enduring favorites… Unfortunately, I pretty much stopped searching for new holiday tunes after childhood, so I was not aware of these options until recently!  Many thanks to the bloggers who are gracious enough to share new (and new-to-us) tunes!

Happy holidays.  Whatever the occasion, I hope you get your hula hoop!

Gratuitous link in lieu of Chipmunks and beer in a tree.

 

Snoopy’s Christmas

“Just be sure to act surprised when you open it!”

 

Lake effect

I should have done the snow angels Sunday night.  I failed to think of an ideal variation on the angel.  I’m not sure if I could survive an attempt at any wintry stunts in 6-10 inches of snow.

Spontaneous, adult-produced snow angels link to a New Year’s in Chicago and then an East Lansing rooftop story.  Don’t worry, there was no yellow snow involved in either.

 

shocks and whizzers

I had this awesome idea (I started musing on it after my ABI tune-up in August, but haven’t gotten around to flushing it out; lack of follow-through again.  Balance. Eye. Elbow. Follow-through.  Alas, I’m only a BEE.  And the follow-through is what adds the most style to any shot.)

The idea was about riding coasters and marching with a thirty pound baritone saxophone strapped to my neck . . . strengthening brain stem? The makings of a bionic woman? (Is anyone interested in that being filled out?)  Where’s the boundary between strengthening something (building stamina, making longer term outcomes more likely) and weakening it (making longer term outcomes less likely)?  Time scales and success, how they influence causal outcomes.  Then there are those pesky intervening variables.  But I’m only going to write more about general and specific stuff if anyone’s interested (now or in the future . . . anyone reading this at some time, feel free to drop a comment).

Otherwise I’m just going with the links I already had, and going with auto pilot:

http://en.wikipedia.org/wiki/Shockwave_%28Six_Flags_Great_America%29

(so that’s the story behind the delays…)

http://en.wikipedia.org/wiki/Whizzer_%28roller_coaster%29
(one to be loved more with age, apparently)

Shockwave was very young when we went on it. I remember we ended up hitting it repeatedly because the park was closing and the line was finally short (apparently most people had given up on it because it was broken-down, with a long line, most of the day). By the end, my ears were ringing, I had a slight headache, and I wasn’t so sure I should’ve gone on it so many times in a row. I HAVE TO believe, now, that it all happened before I knew of any of my tumors. It may have been after I knew of my bilateral vestibular schwannomas, and being diagnosed with NF2. I know I was defiantly stubborn at first that anything in my life would change as a result of NF2, pretty much thinking it would not take me down without a fight. Anyhow, if you are genetically predisposed to developing intracranial tumors, then I do not recommend riding violent roller coasters.

I am also surprised how many spontaneous mutants have been coming to my attention, in circles that aren’t directly related to NF2.

But I’m thinking about other things. It’s easiest to write mindlessly about experiences, while my mind’s actually working on other puzzles.

(And to you, my Whizzer co-rider: I thought I saw you this weekend, and I did see paisley and side-burns that made me think of you. It is you who introduced me to the word, “anomalous,” and I hope you’re doing well, should you ever find my blog.  Locos only.)

Btw, I thought the Whizzer was, “The Wizard,” for I-don’t-know-how-long!

“Yeah, okay, let’s ride the wizard!”

 

nearly trying to sleep

Six o’clock in the morning

[I'm} the last to hear the warning

 

Name games

I never expect or expected anyone to know how to pronounce my surname.

(“Expect the worst / nothing, and one will be pleasantly surprised. A lot of the time.”)

If you go back just four or five years, there weren’t many Przybyszes on the web besides a few others and myself, and it wasn’t so common for me to run into folks (outside my immediate family) around town who knew how to pronounce it. (I don’t believe these are related phenomena.)

Now, it’s pleasing to see many Przybyszes pop up via search engines. (Again, I don’t feel personally responsible for this phenomenon either.)

What did start, quite long ago, was friends of mine who took it upon themselves to memorize the spelling of my surname. Too cool!

It’s actually got a nice little rhythm to it:

P r — z y — b y — s z

Easy as pie in the sky, eh? I’m still waiting for the hit single to be released — hooks, loops, and catchier than Kidz Bop.

I owe emails to a few of these extremely loyal friends. You know how something slips, and then it’s gotta be way, way better to make up for the delay. And soon it’s apparent that one will just disappoint?

(Actually, these aren’t right either — I found some material I want to share with these grand pals when I write, and I know I’d mention that material rather than sharing reasonable facsimiles, if I did write before scanning and reproducing cultural artifacts from the tail-end of the twentieth century. And describing something is rarely as provocative as material evidence of the original.)

Back to the name game:

These are kind of cool for pronunciation and such. I should know more Polish. Really, I should. The world is more than piwo and dupas!

http://www.pgsa.org/CrashCourseInPolish.pdf

http://www.answers.com/topic/polish-language

http://en.wikipedia.org/wiki/Polish_language

Update (12/14/2006):

I emailed Patrick earlier.  Months ago.  I figured it was about time to go ahead and post the pronunciation we actually use here.  It’s been verified as one-of-three that would be considered, “correct,” by polished Polish standards:

“shib-bish”

The lack of a beginning p-sound is certainly to my advantage these days, since my Ps lack the punch they deserve.

So there you have it.

Mispronunciation of my own name never bothered me (perhaps because for over half my life I couldn’t tell the difference?).  No, it’s just not that big of a deal:  names should be fun.  That’s not to say that I don’t take the spelling* and pronunciation of other people’s names seriously.  I do notice that, lacking passive access to how other people’s names are pronounced (first and last…), I feel bad whenever I realize I haven’t been pronouncing a name correctly.  So please, as with all things, please do correct me.

* I suspect a great deal of Dan’s drive, aside from the beverage thing, springs out of a dream of one day living in a world where his (straightforward) last name is not misspelled.  I’m an unknown, but Dan’s work has been out there, all over practically.   I am continuing my campaign to convince him to add an author’s note as to the spelling of his last name.  Your help is appreciated.

 

Laying it down

It’s been happening.

The dreams, where I find myself playing my bari sax again. That all-encompassing sensation and not-so-hokey energizing calmness, sense of relief and satisfaction it gives me. As if it’s healing the world, even.
Still laying down the base and the bass.

“Not everything that can be counted counts, and not everything that counts can be counted.”

- Albert Einstein (1879-1955)

There was a moment when I considered taking up the tenor sax just so I could play this one, and have it sound so powerful:

I Still Believe

Otherwise, my heart belongs to the bari.

 

what if

Based on a dream I had last night, I’m wondering what would have happened if roles had been reversed, for a moment, half my lifetime ago.

Based on a recent viewing of, “Final Cut,” I wonder if I even remember the moment the way it actually happened.  Although I’ve almost always wondered what many moments looked like, from the perspective of the people interacting with me.

 

“See it and be it”

I just had the inspirational phrase of, “see it and be it,” run through my head.  I know it’s probably from some comedy movie or something, but the instance, possibly one of the top so-funny-it-hurts-to-laugh moments of my life, was one in which I owned it… and so now I’m not able to attribute the phrase to it’s original source.  But it’s quite grand to use it when you happen to be on a streak in a game of chance.  Although that’s not to say we can’t WILL those cards to come to us if WE REALLY WANT THEM bad enough.

<> As long as it’s not for monetary gain.  This applies to psychics, too, although mainly for larger sums like the lottery and such, I think.

 

“Is this thing on?”

Yes–

GAME ON!!!