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.)

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