February 2007

Note: this was the inspired, hypergraphic comment that I left on Eszter’s Blog, after reading Dan’s comment, and wanting to finally introduce myself to Eszter. Documentation.

I am not linking now, from mobile, and I apologize for that.

Poor commenter ettiquette on my part, but I’m willing to wager it will be an exception. Based on my present state-of-being. And I know Eszter will laugh about it one day, because I’m funny that way.

Beautiful spirits, all these people!

Ok, so this is the interactive thing that’s taken off… I had imagined the Web turning into something like this, but it’s surreal that it actually happened!!! Travis must love this! Play, play, play. Funny, liberation, equalization, bridging and connecting. Thank goodness others are so kind to use language and images!!! And meet me in shared meanings. (Oh! Champaigne: The SuperComputing Center, Mosaic and all: that ties to the Cherry 7-Up I drank a day ago, etc. I love that all these links and connections have returned!) notes…

Actual comment:
(I also emailed the comment page after my addendum.)

Dan, you are the contagion models masterman: it’s a moral imperative that you test to see if the baby would spread. I don’t think it’s too derivative. Oh, wait–
Just thought of how the limerick thing’s been a biggee (along with other cool babies) in the Annals of Improbable and Irreproducible Research. (Harvard’s mini-AIR was one of the first mailing listservs I joined, back in my CE/GEOS days! I remember getting hooked into U2’s fanbase and news, too.) I still get mini-AIR, 14 years later. Has ND been kind to keep this punk around, or what?!

I’m still saying, “I’m not worthy.” :)

You guys will appreciate this because of your social and communicative leanings and interests: isn’t it amazing how everything came together to allow this late-deafened chick to meet you all?!

Thanks for your humors! I think that was the predomin… Scratch that. I Know that was the predominate thing that attracted me to academia. I’m tempted to name the roll of names here, but don’t want to monopolize Eszter’s comments space. (Although I was a Master Monopoly player as a kid: go railroad tycoon, another form of engineering.)

I didn’t get a submission in for ASA this year, as I had hoped, but I’m totally planning to hop to NYC if you guys are gonna be there.

Here I felt so guilty because formal work wasn’t getting done.

OK, I heard your voice, Dan, so I’ll stop obsessing!

So funny!!!

Catch you guys around.

I can’t post comments on Blogger via Blackberry. I think Eszter has elegant taste in having chosen WordPress.

* By Liszt, associated with the Warner Brothers’ “Tiny Toons Adventures” cartoons. That was the composition that Mr. Crouch transposed so that I could play a duet with my sister for a band and orchestra festival. My sister played flute, and I played E-flat baritone saxophone. I think we have a video (rare!) And it is fitting for me to get it transferred to digital format. It is circa 1992. Then, of course, I’d attempt to share it on YouTube or such!

Alrighty, calm and tired for the day/night. I’ll rest soundly.

It’s been Grand!

Full smiles. (I guess I never really did lose my smile, afterall.)

Grand experiment.

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

“Oh sunny day, oh yeah…..”

checking out my photographs

“Hi Spammers,

here is the paper for Wed. Sorry for sending it so late! (see paper and models
in two separate docs.). This is about half of a
first draft of a paper – I have not written a word on entire sections, and the
ones already written need more care. It may sound familiar to other things I
presented in SPAM since I’m using the same data, dependent variable, and some
old ideas. There’s a monster inside me – like in the ALIEN movies – that makes
me write, even against my will, about why people protest using the ACPS … But
other emerging monsters are ready to take command of my brain and will hopefully
move it to distant places soon.
Although I need feedback on everything, the most pressing question for me now is
whether this is an interesting question to pursue. I’m pretty persuaded that
this paper should ‘fill a gap’ (at least for me), but I’m not sure if people
believe it’s a gap interesting enough to be filled. And as always, I would love
any suggestion for improving my English.

Thanks so much!”

“Life’s like a movie. Write your own ending. Keep believing, keep pretending. We’ve done just what we’ve set out to do. Thanks to the lovers, the dreamers, and YOU!” (Courtesy Henson, Williams, et al)

I just finished watching The Muppet Movie, the movie of my life, basically. The best movie ever made and actually experienced.


I’ve gotten actual sleep, and I’m back to cooking and eating. Everyrhing is flowing smoothly.

At this same time, I’m aware of my physical limits. And they seem perfect. (For example, I’m so accustomed to my chronic dry eye and how my eyelids can’t disperse and retain what tears my body has naturally so that it keeps the lens and cornea at functionally normal levels… and it’s just habit/basic maintenance to use artificial drops every 10 minutes or so (preservative-free). It has maintained my vision, which I had lost in one eye as an infant (congenital/associated with my mutation), and at the time and through my childhood we thought I was on some mysterious course to lose the other eye, too. (Migraines, floaters, loss of visual field episodes… )

There can be tons and tons of symptoms and presentations, and visits to the ER when the body panics in reaction to changes it can’t handle at a particular moment, but if we find a way to tolerate things, and just experience them, move through them and allow them to be what they will be, rather than surrender to fear of what the future may hold, or what may be lost. To seize what’s right with us in the moment and maximize it… To let go of some things when they go. (Perhaps to have them to return, but not with some expectation: just the openness and receptive orientation to it.) Even Steven, you know.

So sometimes its not necessary to have more surgeries to fix the mechanical stuff that gets compromised by nerves being injured, cut, rendered useless. (I’ve got a goldweight for general closure, but to be doing grafting of nerves and all that extra stuff. I’m wondering if it’s just better to let things be and allow the body to heal with time, rather than potentially aggregate more unregulated cell division. (And tumor formation/growth.) The balance… And figuring out when to move out of the way of our bodies’ own natural healing capacities.

I chose to live, whatever it meant as far as functional state because I was interested in exploring and experiencing what I wasn’t familiar witham curiosity, inquisitiveness. Life fascinates me, as do all other people I come in contact with. Our minds, how we process, interpret and experience this amazing gig. Together.

I guess sometimes I thought it was kind of anomalous compared to what seemed the status quo, but I think I may have made a faulty assumption. Lately I feel like it’s universal. All over!!!

I hope you feel the acceptance, too.

Communication in all forms and media. Phenomenal!!!

It’s so great to bridge all the gaps at such a mellow pace here.

Pragmatically, is there anything I can help you with? I have infectious laughter here, too. Drop in if you need a cure for pain or anything!

Because I’m not in a manic flurry here at all. I’m just going with the flow, and I’ve had restful sleep. I’ve started taking more note of actual time passage because I’m well aware that our bodies and minds can play games. But I’m clear, calm, collected, concise, and everything I’m doing is in it’s own relaxed pace. Maybe you call it “vacation mode.” Yeah, I’ve written on that before. It’s cool because I’m not bound to my usual obsession about losing or forgetting decent thoughts, or getting bogged down in clarifying every single detail. I’m secure and confident everything is here to stay. This is not a sense that I’ve had access to at anyrevious point in my life, save perhaps when I was a child? That security is a privilege that we must share with all humankind.

No more exploitation.

I have always been a citizen of the world, although I had no idea when I was a little girl that life circumstances would meander in such a way to so closely and personally connect me with so many friends all over this great sphere.

So that we may all relate to others as extensions of ourselves.

Mind, Self, and Society actualized!!!


Do you feel loved? You should because you are truly accepted. People understand you more when you allow them to be given the assumption that they are genuinely relating to you.

we don’t have to fight faulty assumptions, if we instead choose to work them out interactively and explore the creative potential and meanings and experiences to be generated in moments.

I’ve been dreaming my own life and it’s been awesomely beautiful. It all added up because it happened. One day at a time. And I rode the coasters, the ups and downs, realized and still realize that there’s nothing more than that. We just lap up all the sensations. It’s all a matter of perception and interpretation. And we are, and can ALL BE masters at convincing ourselves an experience is anything we want it to be.

I rode it on faith. In that informal way. It was as unpredictable and delicious for me as anyone. And it takes all of us: past, present, and future. Everything matters. We’re all interconnected, and always free to draw uppn that. Experiences. You know you have them. I’m happy we can embrace them all. That is the source of healing. Play, laughter, effortless action. The smiles–the ones from the soul; they’re all there in all sorts of configurations because it’s spirit and Love. Being human.

That is how we are all rich. And that is our responsibility to each other: in bringing out the best, and enabling everyone to explore potentials among the full spectrum of states-of-being. Universalized equality.

We can still play our creative games and engage in the experiential fun of life (and the risks we’ve beem gifted to invent in our material world). That’s the vehicle for meaning-generation. That’s where we all get to be the master controllers of our own life experiments.

What an awesome social production!!!

Research note:
I have been asleep and dreaming. Much reliving of “random” events in my life. We thrive to survive because we never know what may be around the corner.

Imagination. And “You Can Call Me Al,” on the mental radio. “The Boy in the Bubble.” We no longer need sources of destruction because there’s forgiveness that has resounded out of South Africa and we shall all step up to our obligations to our brothers and sisters everywhere. That is what we all want. Peace is no longer elusive. War is over because we choose not to injure anyone who we relate to as extension of ourself. And we do everything we can to ensure others are as happy as they can be, as long as they choose to give us the gift of their time and attention.


Using that consciousness.

I feel healing. And it was always something to be propogated into wider and wider circles.

The matter of presentation, and bringing form in line with content. That’s the fun stuff. Because all the variety keeps us guessing. And we like our games and puzzles: our brains were designed for them!

And that includes the full spectrum of ways of perceiving the world: intelligence exists in many qualities, whch we’ll be expanding and including people more and more.

Yeah, the Age of Meaning is all about Inclusivity. Everyone may feel at ease. That’s freedom.

Mediated via DVDs courtesy of SJCPL (No Fee materials)

Highly recommended sensorial experiences:

HIGH TECH SOUL: THE CREATION OF TECHNO MUSIC. A film by Gary Bredow. Call# 786.7 H537

NAQOYQATSI. CALL# 303.483 N163

(Gonna insert pic)

We all possess the antidote to habituation.

Cryptic keyword Ludington effect

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!!!

But I never mean to tell anyone how they should live or whatever. Fine to acknowledge options. That’s all.

Unpredictable and completely contrary to just about all expectations at times, yes. We get some rough patches that even linger indefinitely.

Been there, done that. Repeatedly. (Repetition’s great–mean’s the show’s still on.)

What has been really key in managing the severe etiological, and at times extremely aggressive-in-robbing-functions manifestation of NF2 in my life, has oftentimes meant to NOT try to assert fixes, or intervene in a way that makes a change only because things weren’t working “the way they should.” (This is even generally applicable to life, so feel free to extrapolate like that! I’m happy to be back in general and specific territory in a complimenary way.)

But even when extra corrective intervention is taken to “fix” after-effects of something that persists after surgery, or in the continuing presence of tumors, the body is just even more overloaded trying to maintain and repair itself.

I did have a few surgeries after which I came out in way worse shape than what I had been in before them. It wasn’t something that could be fixed by more surgery, though, which is pretty common for just about everyone.

Sometimes the fix comes only after a process of acceptance, adaptation, and then gradual biological recovery. I encourage other folks to give their body a chance, and see what it may do before throwing in more variables for it to accommodate.

I know right now I’m in this moment, and all the weight of the chronic fatigue and various functional limitations doesn’t get communicated. The extent of the physical strain on my body was immense at times. Totally experiential, and just something I took part and partial with existence. (Life is a gift, a privilege. What gives us a right to set conditions of existence–beyond basic human rights?) You make the best of it, you know. Do the best you can with what you’ve got to work with, at any particular time and place. Millions of others have, too. But what I’m saying here for NF2, especially, is that I have totally found that the optimal proactive approach in treating NF2 is to respect the unique ways in which it manifests in each individual. I know we’ve got natural history study data to mine, that will hopefully help guide us even better in the near future. Hopefully we’ll use it!

Sometimes tumors really do just spin out of control in growth. But timing… Perhaps by not catalyzing changes at an accellerated pace allows the body to generate its own regulations. Naturally.

I fully realize I’m tremendously blessed to have experienced functional losses and gains, all unexpected, across such a huge spectrum. I want others to access the capacity to do the same. And learn about themselves and life in the process. Why else are we here?

A life so experientially rich, when one gets beyond trying to force it into being what one thinks one wants, instead of what it just is.

Yes, I’m happy about allowing it all to be what it is. What an empowering choice.

Acrobatics and flipping perceptions of value of independence and dependence in social relations. Reciprocally-mediated power sharing. Inventing roles.

Perspective lens changes

(Note: I’m not purposefully trying to think of anything at the moment. Even though I acknowledge the links to threads I’ve had before. Picturesque landscaping!)

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.

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!

Many more thanks!!!

And the entire IU/Riley Hospital Team!!!!!!

(Never missed a beat on the box, baby!)

Love you guys!

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