distinctive after ducking down the alley

I’m at the mercy of others for rides for awhile. (It’s informal and self-imposed.) The role is one of capitulation when it comes to few and far-between local trips around town: I’m not all pushy about controlling the tunes. So, bye-bye to my preferred grooves, and hello, unknown/later-checked Sunny 101.5. The perfect laboratory setting, though: caught unaware, seconds after we had slowed for several deer to dart across the road at twilight, and this song sounds familiar. “I think I know this song…” Seconds later: You Can Call Me Al–for sure, based on the smiling driver, and courtesy each of my 4 programs. Program 3 allowed for initial recognition, with Program 2 yielding the best capture of range of sounds in the moving vehicle.

Overall, concern about limb weaknesses grew today. But I do hope to be documenting more settings and listening experiences soon–hopefully feeding back on overall strength building. I had the orientation to all this formulated and put into action so well as a late-teen and through early twenties. I recovered it a couple times, but don’t seem to complete what I need to get things to stick before another hit shifts it all again. When you can’t pin it down, you just try to do whatever you can, and keep at it, altering pieces here and there–aware of plenty that you’re missing. Interaction.
Just so there’s no bogging down in better or worse, rather than just different; the aspects and qualities we miss when we judge prematurely…

 

when did everyone start wearing Darth Vader voicechanger masks?

Good stuff so far. There’s so much tweaking I can do with four programs in my processor, plus sensitivity and volume adjustments over a good range. We’ll see how beneficial that is. With the BTE, I did have a moment when I felt FREEDOM in full-force. I’ll fill out details of the day, and throw in pictures, when I get back to desktop. I’ve already found a good combo/settings for a noisy restaurant environment and for listening to music over road noise. I’m a little overloaded for now, so choosing rest for the moment.

 

dawn (Buena)

On our way to Indy. In the Mood (instrumental edition and GMB classic) is in my head. U2 ATYCLB is spinning in the CD deck. I can’t be on the cutting edge of everything in the world of electronic sound regeneration, afterall.

I’m getting my Cochlear Nucleus 22 ABI upgrade speech processor programmed in a few hours. And I’m blogging it.

 

uberzone

It kind of figures. The day after I pop Liquid California in the tape deck, I receive confirmation on the first programming session for my Nucleus 22 ABI Freedom upgrade processor. The box came last week.

(pic insert; just see Flickr widget for now; also note marketing demographics: the hip youngsters on one side of box, and “mature” couple on the other side)

I haven’t had a chance to inspect the contents closely and play, er, learn about the components and accessories, but soon enough!

Other mechanical updates:

I’ve resumed my balance exercises. I’m amazed how much stability and flexibility have returned in my legs (as much as I’m nostalgic for my toned, muscular legs of youth). So, of course, I’m encouraging even more. (I couldn’t hold myself up, or get out of a chair or bed last March/May, and had to lean against the counter for teethbrushing.) That’s a rerun of prior recoveries, although at an extreme degree. That’s also after when I started being conscious of actions, I suppose. Weird, wild stuff…

My arms and hands were so weak. I wasn’t up to sitting at a computer, let alone typing. My left pinkie and ring fingers were limp, yet rigid. I could only reposition them with my other hand. Still, I kept up with this exercise where I touch the hand’s thumb to each fingertip, successively, concentrating on strength and accuracy. I’m guessing this builds dexterity. For both hands, improvements came slowly with time (perhaps aided with manual, deliberate teethbrushing). The left pinkie is still significantly weakened, but I’m now able to semi-straighten it (rather than it being in a perpetual claw form), as well as pull it into fist-form with the rest of the fingers. I did not expect that function to return. When I first started typing again, I had to use another finger to type zzzzs (a letter more commonly used by me than most people). I’m now happy to report my pinkie is handling the z beautifully.

All of this is icing on top of just living. I’m just mentioning it for others with various neurodegenerative diseases. My toes, feet, and lower legs are still fairly weak and lack the sensation and mobility of my younger days, but I don’t talk about the losses hardly ever. I do the exercises I can (the ones that don’t require any equipment, as I’ve mentioned before), and what happens is always icing. While I’m receptive to improvements, I’m always doing the best with what’s actually there now. I’m convinced of the effectiveness of momentum and inserting improvements to routine–making routine–for the purpose of body and behavior modification.

 

it’s getting kind of hectic

Laughing at myself here:
I’ve been wearing my ABI for hours and just now realized I didn’t turn on the power. So I’ve had no sound and didn’t realize it. I was about to make a phone call, then needed to look up more info. At least I wasn’t surprised it wasn’t working.

 

Don’t ask…

and ye shall receive.

Visited Indy for a routine ABI reprogramming session today. Um, surprise: My beloved Nucleus Spectra 22 speech processor (circa 1995) is obsolete. We ordered a Nucleus Freedom (sing it baby…) behind-the-ear (BTE) speech processor. I also get a body-worn processor, but it’s much sleeker than what I have. Kind of like buying a new car with all the color and accessory choices.

The BTE processor fits over the ear and is rechargeable, or can use three hearing aid batteries for back-up. The bodyworn processor could be concealed in a fist, and uses two AAA batteries. (“about the size of an iPod® Shuffle,” as described by the website and demonstrated by my audiologist–I commented that Cochlear and Apple should have package deals, an opinion strengthened by the description of SmartSound capability.) I’ve been casually contemplating a direct hook into a musical audio source for many years now. Although, I must say, that I did achieve a great deal of background sound masking, for understanding someone right next to me, aided by lipreading, in very noisy environments, using my S/squelch setting. That changed in the last couple years. I’m curious whether the new SP will match or exceed that performance.

I’ve been unlike most of my friends with ABIs: I’ve never minded the pocket-sized speech processor or wire going from it to my ear/head for the transmitting coil. While many Cochlear Implant (CI) recipients, and even friends with ABIs in Australia have enjoyed BTE models for years, I was always of the mindset that processing power and performance were far more important than aesthetics. Plus, basically, “I love my ABI,” and all the crazy experiences I’ve had as a result of the sounds it’s restored, and the adventures along the way! It looks like Cochlear may have succeeded in bringing the best of both worlds.

The experiment continues!

———————————-

Cochlear Nucleus Upgrade page:

http://www.cochlearamericas.com/Products/1802.asp

Freedom Upgrade FAQ:

http://www.cochlearupgrade.com/faq.asp

Payment Options:

http://www.cochlearupgrade.com/payment.asp

 

String of Pearls, and Well, that’s one way to lose these walking blues…

Or, it should be something like, “All or Nothing,” but I actually had a day of balancing activity in there–getting things done without burning myself out. (My personal chef and trainer has not turned up yet.) In any case, my anticipations of actions haven’t been very accurate–not for lack of motivation or mental planning. But I’m making progress.

Quick ABI/Captel update (since I’ve been terrible at follow-up):
The clarity of voice coming through the receiver was great today. Better than face-to-face conversations.

I don’t think I’ve been situating myself close enough to people to isolate their voices. I miss the effectiveness of my pre-2007 programs in filtering out background noise (on the S/squelch setting). I think that will just take time and use to regain. I’m receptive to that happening. (It’s been nice this week to realize my mind’s bringing out old coping techniques, potentiality language and such.)

The notable quote from the week: “This is not a mooning contest.”

 

bird talk

The frequency of the geese is perfect for me to hear. When there are bird sounds, I’m not picking up hardly anything in the range of normal speech.

I didn’t have time to test any music today. (When I was in a vehicle, I had the window rolled down a good while, thinking the radio wasn’t on. When I finally rolled the window up, the radio was the main sound, but the ride was short and I was “looking around,” so not really focused on testing… Oh joy, run-ons are back…)

It’s ok, though, because the spontaneous funnies have returned verbally!

We’ve got a Father’s Day special post coming tomorrow.

Have fun!

 

More power (ABI remix)

I switched to my own speech processor today. We’ll see how things go!

 

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.”)

 

when i come around

… Again.

Sort of familiar scene, although I did not come so close to tears (those overwhelming physical feat/happy-yet-guarded ones) the first time, and I wasn’t hooked-up to an EKG machine this time.

I have sound once again. Wild! The elation of signals still getting piped through is tempered by how we’ve had to pull back quite a bit on my comfort/tolerance levels. I have a good deal of adjusting to do. Like I said yesterday, throw it in the pot and stir gently, patiently.

Still exploring what’s possible here. The roller coaster continues.

So far (a couple hours):
My voice irritates me. Quite a bit. Physically. I’ll need to practice talking to myself, which has never been a problem.

Paul Simon’s Graceland CD passed the basic recognition/enjoyment test in the car. Its not where it was, quality-wise, but much better than I expected!

I’ll have to relearn environmental noises, I think. Keyboard taps are easy to recognize, but I thought a motorcycle was behind me, while I was waiting for the parking garage’s elevator. Instead, it was a woman talking on her cell phone.

So much more going through my head, this fine May day. What’s new?

 

ABI update

Performance update report:

The speech discrimination of my ABI around the house here has skyrocketed.

Ease of understanding is a stark contrast. It’s like we’ve actually put in a new program. Things change without changing. Or, actually, it’s just that we can’t observe and measure all the changes that occur. I’m trying to document it somehow, and then maybe we’ll be able to characterize it more.

I’m still very even-keeled and mellow.

Steroid weaning: down to a single 4MG dose of dexamethasone for today and tomorrow. (For anti-seizure med, I’m on

Aaah! Cool Hand Luke is on. Synchronicity. In the hole.

Med… I’m also just taking Keppra (500MG in AM and 1000MG at night). Just making note of level. And so it’s clear I’m not just looped-out on drugs here or something. (I respect the robust skeptics of the world, and the folks who think of more and more variables with which to specify models, with due respect to parsimony.)

This is further confirmation of my longtime theory about how less stess/trying/actual effort in getting what’s said (so that relaxing rather than concentrating hard), significantly enhances the (deaf) brain’s ability to synthesize and process auditory/electrical impulses for the brain to make sense of them.

I know there’s so much context that’s crucial to render meaningful-for-others all that I’ve been writing recently.

Thanks to all you guys over the years who have done the iterative speaking with me, while my ABI was very gradually picking up more and more, and merging with my mind/brain/brainstem. That is so cool how interactive and integrative everything turned out to be. You sense some stuff in flashes here and there, perhaps, but the contingency of life pervases.

Saturated Self. And that’s why I’m not labeling stuff yet.

Bionic woman indeed, I suppose. My Mom is telling me the story of my namesake here:

She’s talking about how when she was pregnant with me, my older cousins (I have tons of cousins), the boys heard her say she had three names to choose from. But when they heard Jamie, none of the other names even got out; they got all excited about the Bionic Woman, and that pretty much settled it. (The actress spells it differently and stuff… I’ll put wiki links, etc. Once I’m on desktop.)

It’s just fun and perhaps germane and relevant to think of that at this moment.

“Believe it or not, I’m walking on air.” Pop culture. Funny soundtracks in my head!!!

 

“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.

 

Can you wiggle your ears?

Let’s go. Interaction. Pithy comment, baby. You know you’ve got it in you! When I get back on my desktop, I do have designs to get more connected and all that. For the fun of it. Whatever my niche is here. I try not to demand much. Scratch that, I demand nothing. I expect a bit of respect–”just a little bit, just a little bit*”–but that’s just because that’s what I insist on dishing out to others. What’s nice though, and you know it… You know, just toss a little crumb, a little catalyst, and the little ham in me gets back in the spotlight. I’m glad she’s still part of me. There’s nothing more than this. Chime in. No need to be shy! Meaning’s in the response. And you’re in more control than you realize.

Things don’t even have to make sense all the time. Blame the drugs. Everything’s always changing. Adapt and improvise. The way of the future. Communitarian project.

My muscle movements feel endowed with some extra phantom power kick. Yet, I still can’t wiggle my ears, using only facial and head muscles. I have seen a few men who have this amazing talent. I don’t know if there are any women who can wiggle their ears. Have you seen any?

My dad is a master ear wiggler, but he doesn’t tend to publicize the fact. Come to think of it, that would make a great YouTube video! Is wiggling your ears something you learn, or just something you can do, or do not? “There is no try.” (Kind of reminds me of when I tried to learn to spit lougies, or whatever–what’s the spelling?!–, WAY back. Just no go. I am content that greater peace exists in the world thanks to that failing. And yeah, since I couldn’t retaliate, the thrill of targeting me got old fast. Ah, the art of passive resistance. Wisdom?)

I was studying my youngest nephew, L.’S, facial expressions tonight. He’s well advanced to where’s he’s generating his own things, and not just imitative of others’ expressions. (Although he has developed a great base repertoire, thanks to abundant comically emotive influences.) With my facial weakness, and especially some of the recent med-induced muted twitching in my cheeks and nose, it’s a real relief and treat to be playing around and interactively, equally, eliciting such animated expressions. His eyes light up as if the energy of the whole world, or even universe, fills his head. Plus, reading about how physically affecting various expressions elicit those chemicals to change the emotions linked to different areas of our brains that are aroused, prompts me to visualize and enhance all the beneficial stuff that can be going on in my amygdala and prefrontal cortex. It’s only natural for me to empathize and attempt a greater understanding of brain functioning, right? I probably should’ve been a neuroscientist. I’ve got the humor. Ah, and that leads us back into cognitive sociology. Perceptions. Bridge those disciplines, baby. I will totally love it, here, if my synthesizing brain works are re-emerging. I’ve missed the relational and manifestly interdependent process by which I so long enjoyed my brain working.

Wakefulness. Marvelous.

What is cool, though, is in the merging of empathy and clinical distance. I have always identified with it, and located consistency in deliberate balance. The detachment there that arises precisely because a scientist cares so much about accuracy and validity. When my work started going more towards what I judged as half-arsed, there was no satisfaction. Even at the same time I realized the futility of beating myself up about it. I know enough to set about changing, or at least refrain from whining, to spare my own self-recriminations. (Regular scholarly trajectories, isn’t it? Although I suppose a survival function was kicked-in all along. But you want it without the excuse, the footnote, the exception. Well, I do. Because there’s gonna be a cool story there, no doubt. And it’s the anecdotes that inspire creativity.) Now, in whatever transformation comes, what may the brain in my head possibly contribute to the world? It’s nice to get back to the terrain of the possible; that I may live up to a hype I felt long ago, in the days of “diagnosis to float.” (Indebtednesses still to be rightfully acknowleddged!) The mental landscape map was clear at one time. And I’m now, apparently in a hypergraphic sort of stint. Why not ride it? I hope I can put the pieces together. Cool stuff, really. Truly.

* Erasure, End of Innocents, #2 on Official Przybysz ABI cassette series, sound and musical appreciation and discrimination training list, with primary fondness for the awesomely energizing and rhythmically distinctive, multi-layering, pitches scales, heights, dimensions, transcending theory and practice instrumental composition: “Pennsylvania Sixty-five Thousand!”

 

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.