Pre-hab like a bear in his natural habitat–a Studebaker

“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.”

 

Simply the best wishes reflected

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,

 

primed and playing the parts of the grasshopper ~and~ the ant

I may have alluded to it, but I would need to check whether I cited it.

“But [Dr.] Horn said he believes Peyton will be back. ‘A lot of what dictates how people heal is their mental makeup,’ Horn said. ‘There’s no doubt he’s got a pretty strong mental makeup, and he’s got a great amount of fortitude and determination.’ ”
From “Surgeon gives insight into Manning’s possible problems*” retrieved on December 1, 2012, from
http://www.wishtv.com/dpp/sports/colts_and_nfl/surgeon-gives-insight-into-mannings-possible-problems

* Updated: Wednesday, 15 Feb 2012, 4:16 PM EST Published: Tuesday, 06 Sep 2011, 6:42 PM EDT

Dr. Horn is my spinal surgeon at Goodman Campbell Brain and Spine. I am preparing questions for him, and recalled the Peyton Manning link prior to our initial meeting. PM has been playing for Denver since then, and I have quipped to myself and in passing to others, about using his outcome as a sort of barometer in contemplating the timing of any surgery to address tumors and cysts compressing substantial portions of my spinal cord. (As amusing an anecdote as that may serve, I have a matrix of time-varying covariates at play–the greatest of which are quite serious. Always remember: laughter is a healing force in itself.) There are many fascinating asides here, but suffice it to say Dr. Lou places a whole lot of stock in fundamentals and preparation, while never neglecting the importance of INTANGIBLES. Come to find out, PM was born in the same year as I was, and we have more in common than I would have guessed when he was a QB for that orange-colored uniform school.

I am a fan of intangibles**, I am bringing quite the mental orientation and experience necessary for Team Przybysz to shine. Glad to know it factors into coach’s play book.

Now is the time to be receptive to the positive unknowns.

** Many folks saw Manti Te’o pushing the broom at the basketball game. I noticed him costumed as one of the zamboni drivers at the hockey game. TCB

Shout-out to Sky and NDWBB, following elevator ride with Assistant Coach Beth Morgan Cunningham. (No inadvertent autograph, as with the Hesburgh/Joyce elevator moment.)

GO IRISH!

 

taxi cab driver’s manual for over-achieving cells*

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.

 

Hammer?

No,
Arms and Hands!

And so it begins again. Another voyage of discovery, prompted by experience and unanticipated convergence. Compassion paired with analytical distance.

I gave him tennis balls and showed him some basic things he can do to regain strength and dexterity. I also predicted he would be able to juggle all three while riding his unicycle the next time I see him. ;-) His wife demonstrated the massaging potential before I suggested it. Keep moving. He is receiving PT at home, and they will probably give him thera-putty and show him a lot more he can do with soup cans, playing cards, coins, and similar household items. A lot comes back just through increasingly taking on one’s own self-care, and I still use my sheets from inpatient and outpatient speech/language, occupational, and physical therapy. His therapist will tailor his program to him, so I didn’t bombard him days before surgery. We should not do too much too soon. Everyone is the same in that we are different in our perceptions, reactions, and micro-level trajectories.

After another challenging steroid taper, I had great difficulty trying to lift and fold hand towels a year ago. Then, some starts and stops, and then all-of-a-sudden, a switch flipped, and I was maintaining my household again and passing the neuro rehab driver’s evaluation. Strength and energy continued to build. I ventured, and continue to reclaim my repertoire. I am amazed everyday at how much has, and continues to, come back for me (for the fifth time, from scratch, in this lifetime). Truly humbling; actions are grace. It wasn’t expected, let alone guaranteed. I honestly believe (still, after all these years!) everyone has a similar level of healing capacity–the time line and specific outcomes are just a giant question mark (and socially dependent, I must add). Survive the backsteps, and keep returning to what we are called to do, in whatever form possible. And plans propagate reality–the positive uncertainty. Fill that space. In flux of an influx. (I am on the cusp of bringing out M-word references coinciding with other movements, past and present.)

In what capacity do we serve best? Here, now.

I continue to think about many of our friends who need strength right now.

 

lived it before reading it

“It’s a paradox: those who have trouble accepting the help they need get discouraged and depressed. Those who can accept help without shame are the ones who become more self-reliant.”
~ Fred Epstein, M.D. on pg. 142, in _if I get to five_

 

pulleys and validation

A worthy read, with bonus IU Med School link:

_My Stroke of Insight: A Brain Scientist’s Personal Journey_ by Jill Bolte Taylor, Ph.D.

How cool is that?!
At about the same time period, I also worked back from scratch (the first time after the first time we all share in common). Similar ways of envisioning healing and controlling reactions have been central to my experiences, but I never realized the physiological basis that determines the time between an emotional reaction being triggered, and then our decision to engage or allow it to pass (after 90 seconds). I’ve been quick to let go of instances of anger, going back to my late teens. I figured out the self-destructive nature of negative emotions rather early. (I was even amazed by my modest abilities long before any were lost to tumors or blood flow interruptions. The talk about bringing energy to life was my natural state since my colicky days, for mostly better and sometimes worse.)

More recently but many months ago, there have been instances when a situation flared up with a loved one. I was challenged, even when I was most compromised and not in a position to control/guide interactions, for insisting that I be allowed to be calm even after I had inadvertently contributed to others becoming enraged. When in a state of recovery, we’re most vulnerable to others defining the situation and privileging their perspective. To me, while I realized we were all growing frustrated by the situation, I acknowledged that I still had to watch out for myself. Yet, a sudden switch from escalating argument to disengaging for the sake of choosing an appropriate moment to broach the topic again, was interpreted as a detrimental change in my personality (despite the lack of an established pattern in my behavior from recent years). Yet in subsequent situations, after explaining things when emotions had calmed, I noticed how my behavioral response started to, once again and effortlessly, gain credence and guide others.

Ways of being.

 

The Far Side is closer than I would’ve thought

I’m watching a brain sugery (with tumor removal) on Discovery Channel. I haven’t seen any of my surgeries. I’m not sure if there are videos and DVDs of them floating around medical schools. A friend of mine was given a DVD of her most recent surgery, and she watched it. I’m sure it’s engrossing.

What prompted this post, though, was how I remember the cartoon of the brain surgeons touching parts of the brain to stimulate responses in other body parts, and how funny that was to me (and continues to be for me.) I know I’ve wondered this before, and here I am wondering it again: what all did they do to me all those times while I was under anesthesia? If they did need some laughs, and getting those laughs comes as part of the functional testing gig, then I find that to be pretty cool. Why not?

I have also wondered if my neurosurgeons operated with musical accompaniment. If yes, then what kind? We were often too busy talking about things not related to medical stuff (or just about me, me, me and my pieces), so that’s why I don’t know these things.

But this guy who shared his operation: he had speech problems after sugery. They could have been more specific: is it that he couldn’t think of the words, or that he could not say them? (Neural vs. motor deficits, or some combo) Or there’s that inability to translate concept to the word, and then express the idea, and it seems so silly and invisible.

You know, like an old friend of mine used to say, “words are turds.” And still, I continue to love those turds. To misplace language, and not know if/when/how it may resurface… It still boggles my mind. How have I maintained anagrammatic skills through all this? Some stuff has certainly caught up with me, despite ongoing efforts to stem and reverse trends. The fluidity is both remarkable and not to be envied.

 

healing… nothing more than healing

“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.

 

Just shave it all

Really–unless the incision site is only gonna be a couple inches, then you’re better off starting from scratch. It’s liberating having your head shaved–especially when you’re naked(1) and oblivious to what’s being done; they give you toasty blankets.

(May, 2004; I’m smiling and laughing in this picture. At least I think that’s why my eyebrows are uneven. Very funny!)

I’d done the eyelid surgery in January, and documented progress of healing (the surgery itself such a surreal experience being conscious, but having vision blocked, while Dr. B. did upper-lid goldweight and injected Gortex to raise the lower lid*), but only thought of getting a picture of this one at a single point in time**. While I did save my staples from my very first brain surgery (1991) for the Przybysz museum, I was fortunate to have a handfull of intracranial surgeries/head incisions amenable to stitches between that one and this one (and to survive them!).

It wasn’t until months later, when this next picture was developed (yes, as in actual film), that I realized how, umm, perhaps shocking the scar may have been to casual observers. While I’ve never minded expanding boundaries to be more inclusive, I also don’t set out to make others uncomfortable just for the sake of some empty shock factor. Actually, that’s counter-productive to my general goals in life. If there’s shock, I want it to really mean something! (At the time I was going to restaurants, with this attitude that I didn’t need a bandana, hat, or head covering, because I was most comfortable without something rubbing against my incision (individual) and because I figured if I went out, not making anything of it, and just being in public (now that I’m well-enough-accustomed to being me), that it might allow for others to feel more comfortable, in general, around people who may have attention-diverting attributes–or if they themselves acquire such an attribute. On third thought, really, I stand by my initial inclination–I’d been through the surgery and figured I was entitled to being as comfortable as possible for my sake. Plus, people probably don’t notice us as much as we think they do anyhow***.

From the rear, after some meticulous clean-up of the dried blood–thanks Mom! Whoahahaha! (Note previous scars and indentations, as a bonus preview! Though, sniff, this was the first surgery after which my own mother no longer found my bald and deformed head “cute.”)  Though the one thing I’ll never be cavalier about is the stress that familes and friends endure while I’m basically sleeping in the O.R.

The MRI freaked me out more than this scar. Way more. Though only for twenty minutes, or so, until we’d developed a treatment plan, thanks to Dr. C. and Dr. P. Weird seeing a mass covering a quadrant of your brain. Kind of funny when it gets to be old hat, though.  Ok, more like crazy–the multi-colored version. I’m currently just hoping the ones that want to get a little too intimate with my brain stem (again!) will settle for the ambience in the general vicinity. From what I’ve heard, they really dig the mental landscapes in there. I enjoy the view from my angle, too, as well as gathering more material to add to the mix, which is precisely why I’d prefer to keep this baby moving along!
Oh! That’s what I meant to write about: pain, tolerance, reinterpreting it, and all the wild stuff that comes with it. Funny stuff!!! For another time. (This going on and on thing, when re-narrating retrospectively, is exactly why I’d been seriously considering limiting the blog to WRITINGS I’ve got a good deal of temporal distance from. My mind bends rather easily, which is cool, but it means I’m prone to spurts of hypergraphia and such. So enough for now. Great to be alive (if only I’d had that exact scar configuration at another time of the year…)!

(1) That is unclothed and alone, for those in the Freshman Year know. Well, not really alone alone, but alone in consciousness or unconsciousness/anesthesia. (Always get the premium cocktail–you don’t want to be puking and risking aspiration and pneumonia, especially if your swallowing is already compromised. Recovering from the surgery is usually eventful enough in itself. My anesthesiologist rocks, too. And the surgical nurses–M., T., and nerve-response monitoring dude–Dr. K., and some of the residents have been pretty good to me, too.) Ah, the social production that is surgery and life!

* Both to help with eye closure, to combat chronic dry eye caused by tumors compromising facial nerve function. I missed my smile tons in the early days (several years actually), as well as my dimples, and doing crazy looks with my eyebrows, but I’m creative enough to find other schticks to elicit similar responses from others that my smile did.

** The post-operative high following this one, though not necessarily allowing me tons of energy to do everything I wanted, did have my mind racing, thinking about everything I thought I was capable of doing. Ok, there were some personality changes that freaked me out, too, but I thought those were induced by anti-seizure and neuropathic pain meds. I see it, and the process that’s unfolded since, in a different light. Perspective is highly under-emphasized; and what’s worse is realizing when you lack it, right when you don’t have it. With time, relaxing about it, and connecting with various social influences, sometimes we get it back–and that’s grand. Constantly changing, so I do hope it keeps up.

*** If you’re with some friends in a bar, and someone comes up to ask what the deal is, it helps to have confederates (primarily consisiting of sociologists and philosophers) taking part in a “support group.”  Widely construed, everything’s accurate!