Flashbacks




Regis and Me (before either of us were making millionaires out of others…)

Originally uploaded by przybysz.

The above was back in the day.

New anecdote today, courtesy of Angelo Di Carlo (WNDU), Regis Philbin, and Fighting Irish Football obliging us with a #1, single TD, to defeat BC. Many thanks and many happy adventures to you!

P.S. This anecdote gets better after Regis reigns at the top of the best sellers, so BUY THE BOOK!

You influence more people than you realize. Do you notice how impressionable upon you some, even momentary, interactions are with certain people in your life? The same goes for what you put out into the world. I have been thinking about how I always had a tendency to think in terms of, “why not me?” when it came to the stuff that’s happened to me that many would consider undesirable, and “why me?” when viewing the parts that are more conventionally seen as positive. (This is a recurring theme, as I’ve written of it in the past.) Have you honored, through your deeds, the legacy of friends and family members who have passed? I find some solace in how I am mindful of those who came before me, and that I continue to do the best I can with what I have at any particular moment. Perhaps that sort of approach could help comfort and assure you?

This path meanders a lot. When I was in my late teens and early twenties, I realized what an asset my mind was in dealing with physical insults. I often expressed how thankful I was to have my mind–as quirky and weird as I always was and reveled in being. Little did I know that I would acquire substantial cognitive challenges in my late twenties and early thirties–thanks to a perfect storm of sorts–and somehow lose, regain, lose, and keep on building somehow even in the midst of losses. We are not forced to, but sometimes we choose to look at this gig or any state-of-being as definite, permanent, and static, when what we actually grapple with are the transitions and changes. In a single moment, we may feel completely displaced and out of sync, but that does not preclude identifying purpose and meaning, under any circumstance, at some time, and having a profound affect from there. Mattie Stepanek comes to my mind here, among others. You are such an empathic being.

I don’t know if it’s because that veil of “what disability and ‘dependency’ mean” was lifted at such a pivotal and regenerative time for me (late 1990s), or my repeated experiences of grace in being broken down to total dependency (and having to work collectively with all that that entails, but I’m just not buying into the hype that we, as a human race, can actualize communitarian interdependence if we limit ourselves by writing off “those who cannot take care of themselves.” That describes every infant out there, yet we find tons of meaning and inspiration in the percieved and actualized potential of those beings.

You guys can relate to this, I know you can: it is so much different to experience something than to observe it, imagine it, and judge “what it must be like.”

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

You should read this.

“WIN”

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

1994 ND football

1994 ND stadium with blimp

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:

Regis and Me (before either of us were making millionaires out of others...)

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

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.

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.

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.

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