“I’m glad my surgery is just a little over a week away. Good timing. No guarantees, but I am psyched up for relieving my spinal cord and nerve roots from so much compression. I can totally see this being like what my 1998 brain stem surgery did for me. That is best case, and I’ll focus on that and deal with what actually happens, like we always do.”

“In any moment, choose enduring emotions wisely.”

We love it when people ask us how we’re feeling, rather than telling us how they think we are doing. We love it even more when they listen to our response, and receive it in the genuine, sincere sense it is expressed. “I love you,” builds. “I worry (all the time)” destroys. If worry is a manifestation of love, then why not cut to the chase, and just love, building up strength in all?

Recurring themes:

Pain is exhausting. I still tire fast/out of nowhere, dealing with tumor load, but I’m not rundown 24/7 like I was. I went through years and years of that chronic pain. Never did find a pain med that solved that (being at Notre Dame and around my nephews were great consolations, and I did learn a lot from experiencing that invisible load). At one point, after two more meds had turned on me, I insisted to local neurologist and then the pain clinic specialist, that I wanted to pursue working on movement, strength, and exercise. Both of them still insisted I try more meds. No thank you–I just kept going about my passions, like you are. FINALLY got my therapy on after another few years of pain, and going through the wringer with meningioma surgery (times three). Miracle of all, between recoveries and alleviation of most of the pain. True, much is gone due to numbness and lowered sensitivity, but here I am in the position of possibly acquiring more (hopefully short-term) pain with this surgery, than what I have going in. This is a first, other than my very first surgery. I do have the alleviation of pressure on my entire spinal cord, and more, to gain short and long term. I don’t think I’d be alive if we had started spinal surgeries on me in my teens, and I’m so thankful for even the advancements in knowledge and experience in even the past five years, not to mention the cumulative tools and resilience I’ve built over 22 years. The timing is feeling right.

Thanks for getting me on a roll, and listening. It’s always surprising how things work out over time. We are bombarded with messages that everything just gets worse with age/disease course/yada yada, and it totally neglects the reality of how adaptive our bodies and minds are. Tap your potential and give yourself some credit for how well you are holding up, all things considered. I hope your appointments go well, and your energy level picks up while pain plummets.

Love and Hugs,

“Even when we deal with major threats, we have the choice to remain receptive
to healing. No expectation. Just simply being a welcoming vessel in the
present state we inhabit. We are all connected, capable of enormous

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.”

It just streamed out in this form, with these examples, when I composed an email reply. The basic premise and practices are more generally applicable. Chalk it up to the always present, but humble empathic reservoir comprising inner peace. Lest we forget how important it is to keep feeding virtuous cycles of socially shared thoughts and behavior.

“Well, I figure it doesn’t hurt to try to keep up on what we can with our senses. I’ve been dealing with eye and vision issues all my life, so it’s always been a priority. Nothing’s guaranteed or a given–just doing the best I can with what I have.

My balance is more dependent on vision than the other way around. But, I notice my balance in poor lighting and with my eyes closed DOES improve as I practice more–even if it is just the time I am leaning against the sink counter with my eyes closed. Or, the way I pay attention to what it feels like when I am getting dressed, leaning, or picking things up from the ground. Always a work in progress! I think having to retrain to walk so many times, while vision was poor or double after surgeries, helped me to tune into gravitational pulls, and orient to the surface and incline directly under me AND to the center of the earth. When we have slow recoveries, paying attention to the parts that feed into the whole, and not getting fixated on speed or appearance, probably open up how we perceive the potential of improving. I’ve always been receptive. Never perfect in execution, but it does pay to keep trying and NOT use labels or characterizations that are limiting and discouraging.

We do very well. We are fortunate because we always have much to lose and gain. We decide which angle to focus. I LOVE the feeling every time I sit or stand on my own. When I couldn’t, I didn’t get down because I couldn’t do those, because I was happy I was breathing and had some feeling, and so on.

I hope you don’t assume there’s only one way to go–decline and loss. It may take time and attention on aspects of daily living that used to be automatic, but every bit adds up.

Hugs, Jamie”

* I would edit “never perfect” in another context. We are often perfect in a moment, without awareness of that perfection. (Revert back to main point.) Every little step!

Sheet of notebook paper from the 1980s.

(text of the PDF letter posted above follows, and then contemporary commentary)

Dear Tooth Fairy,

I know alot of people are loosing thier teeth, because of the Thanksgiving rush, but please give me $1.50 instead of $1.00.

P.S. If you dond have change and you only have $2.00 or twenty that will be fine.

I DON’T Have ALOT LEFT SO Depend on Nicholas, my baby cousin, he has lots!

***** original spelling and other errors preserved from original document

I still sort of remember how the P.S. was an afterthought. By this time, I knew the connections with the tooth fairy, and that being too overtly greedy would not work.  I love how I framed the option of rounding up to larger denominations as being satisfactory and convenient. But that’s after my first recall was one knowing that this was during my Monopoly-mastering stage, so I didn’t realize I was so diplomatic in the request. (I think I had another note when I was cashing in a tooth with a silver filling, but I’ve never come across that one.) The reason I didn’t have many primary teeth left had a lot to do with the missing top-front four, and another instance when I lost two teeth on the same day. Look how smart my parents were, though—they knew the teeth supply was limited, and so funded the tooth fairy trade. When it came to school, they never destroyed the intrinsic motivation of learning (or inadvertently raised the pay-off for cheating) by paying us for grades.

"U went for glasses? Nurd or sexy?"

“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!”

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!


“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!


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?



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.

Nd won hockey sweeping mich out the door baby luv u mom

This was an unsolicited message.  I am beaming with pride!  And way to go, Irish Icers!

“Big moon. Luv u mom

Sent via ___ from ___"

Pull your pants up!!!


I know she’s in public… so this is especially good advice.

Note: I’ve been making empty statements about posting various situation and dialogue snippets to my blog. I’ve refrained. (Largely because I forget what I was going to post, and forgotten snippets aren’t very funny.) I saw this stuff in print, somewhere, and figured it was fair game.

Way back, someone had written about how sometimes as frequently as every day there was a period of time where he allowed himself to mourn his losses (and the losses of others in the world) and sort of wallow in pity… and that this was something that he did for a very short period of time, but he let it happen if he felt like it… and then he was free to move out from there and live.

When I first joined the Crew I remember asking about advice for dealing with whatever happened (I asked a lot of questions back then!) and I remember someone (maybe one of the giants you speak of, but they lived in this world just as we are doing) saying it’s seldom a particular state of being that’s so difficult to live with, it’s that initial change in state.

I put the two together… and soon I had turned outward (and inward at the same time) and I was getting that balance: It’s hard because we don’t want to let go of things if they can be improved somehow, yet we need to know when to just fly with it and improvise.

The thing is, if we let go of something and are still receptive for it to return then we can move on and if it does return, then we are surprised and delighted (breathing, walking, eating, days free of constant and severe headaches, mornings not filled with nausea, and hearing music in my experience). If it doesn’t, then we just keep on keeping on (a full smile, and I know there’s other stuff for me, but I don’t even think about them anymore so I can’t name ’em).

The reason why I’m “up” a lot of the time now and why the Crew rarely sees my “down” times is because everything is just part of a process now… and having come through a really rough few years of living day-to-day and experiencing total dependence on the people around me, I can use what I learned through those experiences to fuel my life every day. When I came out of my surgery in 1996, I couldn’t do anything for myself. At first it was pure torture because my body was completely out of control and there wasn’t anything I could do about it.

It didn’t take long for me to just totally give into it… and instead of fighting the dependency, I reveled in it as an experience. I was still very much determined to get myself back in shape to do things for myself again, but it stopped being about me fighting to get up a mountain and just turned into me traveling down the path, learning what I could along the way and not really thinking about where it was leading. That’s how I dealt with the cycles of depression when the uncertainties were getting the best of me.

It’s not that I’ve always been happy (or even that I always am happy happy all the time now), it’s just that going through the extreme states that NF2 exposes us to had to be for a reason for me and it seems like no matter what was/is happening to my body, the constant has been my ability to define what it all meant/means.

You are one of the “WOW!” people.
It doesn’t mean you’ll always be in a cheery mood, but if you’ll stick around a bit and give things some time then I’ll bet the better days will overpower the others. Please give it a go because we need you.

By the way, I despised the rehab people and hated it when people kept telling me to be patient during periodic fits of thinking things were going too slow. Everything looks so much better when looking back, though! I hope you get to do the same, although maybe a little different.

. . . HOT TUB!!!!!!!!!!!!!!!!!
I am there! I really like hot tubs. One of my nicest memories was a late Spring night in ’96. We were in California, nestled between mountain ridges. The moon and the stars shone brightly in the sky. The air was rather brisk, but the night was made perfect as we slipped off our clothes and slithered into the hot tub; the steam rising to caress our bodies, the sweet motion of the spa jets to take away the day’s pains from our arduous journey. Yes, boys, there was gold in them hills–gold!

(portions of the above passage are completely factual)

. . .

[8/2006: the context of this excerpt included some references to watching Seinfeld at 12:30am, so I am assuming that J. Peterman catalogue-speak was fresh in my mind]

… I forgot to tell you earlier about the Rolling Stone issue I got today:

the advertisement for Fruit of the Loom underwear actually had a miniature pair of men’s underwear in it!!! complete with the name brand on the waist band and similar stitching, etc. like the ‘real thing’.
It was quite humorous. I started cracking up while my Mom was on the phone. I didn’t know who she was talking to, but she ‘shushed’ me… I guess it was business… I held it up to her right away and she just about cracked up on the phone.