One step at a time, but I’ve already worked out how to approach and think about an extended in-patient rehabilitation for my spine.

Summer in Austin; research at UT PRC on Demographic Methods in Minority Demography. It was my first time traveling via airplane alone (relatively speaking–i was joined by the flight crew and other passengers, afterall), and deaf, then via first solo passenger cab ride. It was a leap of faith going to an unfamiliar universityfor the summer. I was housed in The Castillian. Under the impression that bedding and towels were included with boarding, I did not pack any. Upon entering my room, I was faced with two twin beds with bare mattresses, and a bathroom containing only a partial roll of toilet tissue. My roommate was not expected to arrive for another day. This was before I had any mobile device with internet access–or ubiquitous wi-fi for that matter, and I found myself using the phone book to locate a Wal-Mart or Target, and called a cab (my first ever alone at night–one previous cab ride was with Chicago friends leading on a New Year’s Eve) using TTY.

Yada, yada, rich textured story… (Gramsci has his prison notebooks. Przybysz has her Austin notebooks.)

Strategy for dealing with my beautiful neon spine (inspired by the most recent Anania Update and by history and Team Przybysz):
Go to best center with great people, immerse oneself in rounded, yet concentrated experience. Receptive orientation attending to personal and interpersonal growth.

This is an opportunity, an extension of my life’s work.

Continue fulfilling potential, creating, experimenting, improvising, exploring, discovering, flipping “interruptions” into opportunities, locating threads of continuity in discontinuity, applying the totality of cumulative experiences to the unknown and unpredictable.

* Isn’t that what tumors are, when we think about it? A force of life. Sometimes conducive environments are where we least expect. It wasn’t the story I was trying to write, but that’s what keeps me so interested and intrigued. Our university is everywhere, and not necessarily what we anticipatein form or content.

(With a lilt in pitch, and drawn out sound, as only Rob “Richmeister” Schneider can do, in an elevator with M. J. Fox)

It’s over the ten year interval, so here’s a bit that’s always been in the unlocked vault, because I see some folks searching, and I appreciated when I had something to find. Have Fun!

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.”

Everybody loves mail. Especially packages. Some people get quality packages. Me, well, my most recent package, from a couple weeks ago, was this:

It’s been many years since I’ve had possession of hard copies of any of my brain or spinal scans. I didn’t request these, but I suspect they are an anniversary gift, or a Christmas card from my neurosurgeon, an honorable and compassionate man of even fewer words than my previous beloved neurosurgeon–you know, the one who inspired the t-shirts and bumper stickers reading, “Have you hugged your neurosurgeon today?”  (I’ve been fortunate to have cool surgeons, who “get me.”  {My humor about my body is a bit detached and clinical, at times.  I don’t think that’s always good for my mom, but then there are times I know it is.}  In any case, it’s that match with my surgeons, and having the same definition of, “success,” relative to time, that allows me to minimize a lot of my situation.  Well, that, and the fact that they are the best team!!!)

I admit, I have been trying to place more emphasis on other aspects of my life and experiences than personal medical ones, aside from instances when I’ve been forced (thank you mr. grand mal of March) or pleased (thank you ms. ABI) to spend time near hospitals.  It was, I do believe, a natural reaction to the reality I faced, and continue to face.  And then time just flies.  Many flare-ups pass on their own, and I squeeze as much as I can in the in-between.  (Ok, I guess I have mastered something!)

Life is good.

A year ago, these scans were taken while I had been admitted locally, through the emergency room, after pain went on a runaway train, with nausea only complicating everything.  I’m continually blown away by how the extremes are actually on scales that slide, further and further from the minimum and previous midpoint.  And how accustomed I’ve become to allowing them to do so, when it comes to my body’s tolerance to insults.  Coping is good; shifting perspectives and using more angles to view something cannot be underestimated.  I am convinced that everyone experiences life, in general, this way.  Are you aware of the process while it’s happening?  For some things and not others?  There are always some things that must be let go of, for the sake of survival.  Yet there are others, and the strategies developed through having experienced them, that we must retain–those things we continue to shoot for, improvising new avenues to explore, ways that might work to get to the same place, and then the hard lessons we’d rather not repeat.  I don’t know that we can always tell the difference.  I do believe we do the best we can with what we have to work with.

We’re in that phase of collective experience where it’s acceptable (even encouraged) for people to share junk going on medically, and the experiential insights generated from there.  (Thank you Morrie, and others.)  It’s no longer a matter of being part of fad-like, hokey, support groups, but the networks, experience-derived knowledge, and empathic understanding that are cultivated by the proliferation of these types of sharing, are this rich reservoir from which, you bet your sweet dupa, we can learn, understand, and relate at a level of interdependence we have yet to realize.  When I wasn’t so entrenched in the practicalities of day-to-day management of energy, or even while I was somewhat tethered by them, but not to the current extent of moment-to-moment changes (which I may have set as a standard description earlier, only to find that it was not at this level)–take last Fri.–sidestory tangent worth sharing, but not right now–), I was free to theorize.  To leave the context that fed that process of arriving at, and documenting the flipping around of worldviews, assumptions, conclusions, and proscriptions for future behavior, would tear away the very real basis for any reasonable belief that a world could work based on alternative, constructive assumptions rooted in interdependency (the uniting theme in so much work that has come before us).

I won’t solve it all tonight, but it’s good to get going on that trail again.  It’s a grand distraction, er, endeavor.  (But I’ll still try to get my appointments in order.  Straight off tomorrow today.  Really.)

When I had read about boundary work years ago, I considered myself a true integrationist, perhaps mostly because my work on two fronts was, largely, my life.  That was a simple life I embraced, whole-heartedly, and thrived in many ways, even as some tumors were trying to thrive in their own way.  Back to boundary work:  Nevermind that I pretty much kept those two fronts separate, for good reason.

But that’s another post, with multiple angles.

Feel free to throw in some comments, reactions, questions, or whatever pops in your head.  I’m very much working from a base level of “authority” here.  I do plan to develop informational material on my blog, that’s straightforward and presents practical things I’ve picked up along the way.  For the things that are potentially useful for the greatest number of people affected by Neurofibromatosis Type 2 (NF2), I want to make sure they are set apart and easily accessible.  (I don’t mean to spew so much junk at other times, but sometimes the engine needs to be warmed up before it runs smoothly, and sometimes it just needs a leisurely ride along the coast, with mountains on one side and the sea on the other.)

Good for now.  Make someone else smile–it feels great!  (I do remember a stage in there, where I felt like I couldn’t make random strangers smile because of my acquired facial palsy, but that was discounted on two occasions today yesterday.)

Healing…. a great thing to concentrate on, for others, to settle the mind for the night.  (Don’t worry, I’ve been sleeping a great deal to keep headaches at bay–just at weird times sometimes.)

“Our bodies have an amazing capacity for healing.”

Humor does wonders.  I guess this has been shown on multiple levels now, but just so you know, I’ve been asserting it for over thirty years.

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.