Neurosurgery


“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.”

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,

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!

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.

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.

“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_

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.

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