NF2


This glacial till manifests plenty of ups and downs, over and again. I meant to record more highlights in the past few months. Today brought me back to the friendly therapy pool. Simply phenomenal to experience this current state-of-being in aquatic solace. Mighty fine and challenging workout, too. I trust in the timing of each element and variable of this recovery. T1-T12 on April 22, 2013.

Exceed expectations by working with time.
Cast doubt and discouragement aside. What actually happens constitutes the possible.

Thankful for the journey: all the in-between.

Wow. So many firsts and rich experiences since April. Time to start writing!

Just a snippet ffom today;

Added Tuesday PT session; standing on railed platform, nearly full weight on legs, let go to move each arm on D’s shoulders. Used own power to stand from chair.

Right effort prevailed

Process baby

Many thanks

“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.”

Triple OT to share a final free Big Mac with fans? Nowhere else but Notre Dame!

Loving the Heart of the Irish. Fierce as ever.

Local distance dedication to Skylar Diggins and her NDWBB sisters:

“What A Feeling” Lyrics by Irene Cara

First when there’s nothing but a slow glowing dream that your fear seems to hide deep inside your mind. All alone I have cried silent tears full of pride in a world made of steel,made of stone. Well, I hear the music,close my eyes, feel the rhythm,wrap around, take a hold of my heart. What a feeling. Bein’s believin’.I can have it all, now I’m dancing for my life. Take your passion and make it happen. Pictures come alive, you can dance right through your life. Now I hear the music,close my eyes, I am rhythm. In a flash it takes hold of my heart. What a feeling. Bein’s believin’.I can have it all, now I’m dancing for my life.[ From: http://www.elyrics.net ]Take your passion and make it happen. Pictures come alive, now I’m dancing through my life. What a feeling. What a feeling I AM MUSIC NOW Bein’s believin’. I AM RHYTHM NOW Pictures come alive, you can dance right through your life. What a feeling. YOU CAN REALLY HAVE IT ALL What a feeling. PICTURES COME ALIVE WHEN I CALLI can have it all I CAN REALLY HAVE IT ALL Have it all PICTURES COME ALIVE WHEN I CALLCALL CALL CALL CALL WHAT A FEELINGI can have it all BEIN’S BELIEVIN Bein’s believin’ TAKE YOUR PASSIONMAKE IT HAPPEN make it happen WHAT A FEELING what a feeling BEIN’S BELIEVIN’ (fade)Songwriter(s): Irene Cara, Giorgio Moroder, Keith Forsey Copyright: Wb Music Corp., Alcor Music (usa), Sony/Atv Harmony, Carub Music

Retrieved 3/4/13 from
http://www.elyrics.net/read/i/irene-cara-lyrics/what-a-feeling-lyrics.html

Too late to hunt for my trackback, but smooth timing to witness embodiment of a classic Przybysz quote. What an exquisite night of synchronicity arising after equally sad and joyous life events. with life, we take it all, embrace it, and feel humbled for every opportunity. Intrinsic Motivation
S.A.L.S.A.!

Triple OT to share a final free Big Mac with fans? Nowhere else but Notre Dame!

Loving the Heart of the Irish. Fierce as ever.

Local distance dedication to Skylar Diggins and her NDWBB sisters:

“What A Feeling” Lyrics by Irene Cara

First when there’s nothing but a slow glowing dream that your fear seems to hide deep inside your mind. All alone I have cried silent tears full of pride in a world made of steel,made of stone. Well, I hear the music,close my eyes, feel the rhythm,wrap around, take a hold of my heart. What a feeling. Bein’s believin’.I can have it all, now I’m dancing for my life. Take your passion and make it happen. Pictures come alive, you can dance right through your life. Now I hear the music,close my eyes, I am rhythm. In a flash it takes hold of my heart. What a feeling. Bein’s believin’.I can have it all, now I’m dancing for my life.[ From: http://www.elyrics.net ]Take your passion and make it happen. Pictures come alive, now I’m dancing through my life. What a feeling. What a feeling I AM MUSIC NOW Bein’s believin’. I AM RHYTHM NOW Pictures come alive, you can dance right through your life. What a feeling. YOU CAN REALLY HAVE IT ALL What a feeling. PICTURES COME ALIVE WHEN I CALLI can have it all I CAN REALLY HAVE IT ALL Have it all PICTURES COME ALIVE WHEN I CALLCALL CALL CALL CALL WHAT A FEELINGI can have it all BEIN’S BELIEVIN Bein’s believin’ TAKE YOUR PASSIONMAKE IT HAPPEN make it happen WHAT A FEELING what a feeling BEIN’S BELIEVIN’ (fade)Songwriter(s): Irene Cara, Giorgio Moroder, Keith Forsey Copyright: Wb Music Corp., Alcor Music (usa), Sony/Atv Harmony, Carub Music

Retrieved 3/4/13 from
http://www.elyrics.net/read/i/irene-cara-lyrics/what-a-feeling-lyrics.html

Too late to hunt for my trackback, but smooth timing to witness embodiment of a classic Przybysz quote. What an exquisite night of synchronicity arising after equally sad and joyous life events. with life, we take it all, embrace it, and feel humbled for every opportunity. Intrinsic Motivation
S.A.L.S.A.!

So here’s the deal:
I prefer working with people, cooperatively, to get things done, increase inclusion and accessibility.

I do this rather quietly, incorporating changes as a matter of routine, except for instances when obvious railroading or ignorance arise. At such times, I most certainly do account for the perspectives, assumptions, and constraints taken by co-interactors. At the same time, I realize the majority of individuals I encounter are not interested in a multi-level viewpoint, or the big picture wherein what I am advocating and trying advance also furthers their immediate and long term interest. There is no substitute for the raised level of consciousness of embodying devalued states of existence.

A week after a most injurious betrayal, and a day after Reverend King’s call to action, we are regrouping:

“The task is equally noble, whether conceived as play or work, simple or difficult. Have Fun!”
“Steps forward and back are fine with me–that’s all dancing is.” ~Jamie

“There is nothing that wastes the body like worry, and one who has any faith in God should be ashamed to worry about anything whatsoever” ~Mahatma Gandhi

“I long to accomplish a great and noble task, but it is my chief duty to accomplish humble tasks as though they were great and noble. The world is moved along, not only by the mighty shoves of its heroes, but also by the aggregate of the tiny pushes of each honest worker.” ~Helen Keller

“1. Out of clutter, find simplicity. 2. From discord, find harmony. 3. In the middle of difficulty lies opportunity.” ~Albert Einstein

Dalai Lama: “The ultimate source of a happy life is warm-heartednes­s. This means extending to others the kind of concern we have for ourselves. On a simple level we find that if we have a compassionate heart we naturally have more friends. And scientists today are discovering that while anger and hatred eat into our immune system, warm-heartednes­s and compassion are good for our health.”

“The practice of patience guards us against losing our presence of mind. It enables us to remain undisturbed, even when the situation is really difficult. It gives us a certain amount of inner peace, which allows us some self-control, so that we can choose to respond to situations in an appropriate and compassionate manner, rather than being driven by our disturbing emotions.” ~Dalai Lama

“A compassionate attitude helps you communicate more easily with your fellow human beings. As a result, you make more genuine friends and the atmosphere around you is more positive, which gives you greater inner strength. This inner strength helps you spontaneously concern yourself with others, instead of thinking only about yourself.” ~Dalai Lama

Mudita (Pāli and Sanskrit: मुदित) in Buddhism is joy. It is especially sympathetic or vicarious joy, the pleasure that comes from delighting in other people’s well-being
~~~~~~~~~

“An individual has not started living until he can rise above the narrow confines of his individualistic concerns to the broader concerns of all humanity.”
“And it is again my deep conviction that ultimately a genuine leader is not a searcher of consensus, but a molder of consensus.”

“There are some things concerning which we must always be maladjusted if we are to be people of good will. We must never adjust ourselves to racial discrimination and racial segregation. We must never adjust ourselves to religious bigotry. We must never adjust ourselves to economic conditions that take necessities from the many to give luxuries to the few. We must never adjust ourselves to the madness of militarism, and the self-defeating effects of physical violence.”

~Dr. Martin Luther King, Jr

Dalai Lama ~
“It is important that when pursuing our own self-interest we should be “wise selfish” and not “foolish selfish”. Being foolish selfish means pursuing our own interests in a narrow, shortsighted way. Being wise selfish means taking a broader view and recognizing that our own long-term individual interest lies in the welfare of everyone. Being wise selfish means being compassionate.”

“In the face of all the challenges we face today, is my optimism about the future of humanity idealistic? Perhaps it is. Is it unrealistic? Certainly not. To remain indifferent to the challenges we face is indefensible. If the goal is noble, whether or not it is realized within our lifetime is largely irrelevant. What we must do therefore is to strive and persevere and never give up.”
“The nature of the mind is such that if certain mental qualities are developed on a sound basis, they not only remain, but they also increase. In fact, once properly developed, the mind’s good qualities eventually increase indefinitely. Therefore spiritual practice brings us long-term happiness and inner strength.”

“If you don’t like something change it; if you can’t change it, change the way you think about it.”  ~Mary Engelbreit

“To know that I am nothing, that is wisdom. To know that I am everything, that is love. And between these two my life moves.” ~Nisargadatta Maharaj

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:

https://przybysz.wordpress.com/2008/11/25/gems-and-selective-memory/

https://przybysz.wordpress.com/2011/08/13/culprit-fear-in-case-it-helps-anyone/

https://przybysz.wordpress.com/2011/08/09/because-its-what-jordan-taught-us/

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!

It’s a course I didn’t get up to in my CE/GEOS curriculum, yet I have been reflecting on it more recently–particularly with respect to air as a fluid, walking on land, and walking in the pool. Two weeks of M-W-F visits to the therapy pool, and we missed Monday, but we were back today. Again, the Yin/Yang aspects of proper form and relaxation, drew my attention. What’s nice about having my background (athletically and via medical recoveries), is all I internalized and stored in my toolbox without realizing. So much was turned into fun play, even when it was work. The breakthrough today was at least double. First, I decided to ditch the noodle and take advantage of the forgiving fluid in the pool. This put more of my attention on the tactile sensation of my feet, and a more natural striding motion of my hands and arms, which contribute to better form. (In-between, some of these sessions when I’ve really set out to bolster strength/form/balance, I evaluated my mental approach, also. My orientation in the past had been to be receptive to improvements, but not expectant. I set out today with a commitment to relaxation.) Instead of getting bogged down in the lack of roll/elasticity from heel to toes and propelling forward while fending with excessive lateral dips, I was back in my comfort zone of enjoying learning how my body moves, and controlling what I still can(#2 breakthrough from the woman who taught me to walk again again again).

Moments of flow.The process is still the product.

It may help to situate ourselves within the larger historical disability rights movement. I came to consciousness as a deaf undergraduate, with mobility impairments to boot. I realize the identity work is very hard on many folks, but getting beyond our MISperceptions and preconceptions about what it means to be deaf or disabled, or to have a chronic genetic disorder, does open opportunities for us. We CAN control our minds. (Btw, MOST people change their life trajectory/major/career. The change isn’t a failure–we just need to flow with opportunities as they open.) Maintain a receptive orientation.
You are justifiably rooted in the fact that disability and discrimination–in a wide spectrum of forms–persist as social constructions, and are enacted and re-enacted in everyday life. That fact did not stop many folks who pushed for justice for all, and full inclusion. Be the change. We are ingenious in the way we adapt to so very many unpredictable changes we cannot control. Have fun building a broad base of tools and knowledge, and keep going out on limbs to take advantage of opportunities. It’s tons of fun being part of constructive, positive change.

(I gave a couple days for vents, but have to flip it to a pep talk, because we really do need everyone exploring individual potentials, and going out and showing ourselves and others what is possible, sometimes with only the slightest modification (many times leading to quality improvements).)

Pursue your passions and embrace the journey–every relationship is reciprocal and interdependent.

Yeah, we still dream of the day when we choose to work for the government out of service to our nation, and not for health insurance–when a private employer doesn’t balk at hiring someone with a medical condition because of the cost of insuring them. We just need to keep chipping away. Framing challenges in ways that empower us, is one way of tapping much-needed energy and momentum.

Strength and Love

I didn’t make it to London, but my left leg sure showed that 1.5lb (.68kg)* weight who’s boss at PT! (That’s a FIFTY PERCENT INCREASE over last week’s session!) Still, it’s not about the load–it’s about controlling it on the lift both up and down*. Attention, awareness, and persistence add up to flow, baby!
Pleased and humbled: Mark did a great job leading me to show and realize how much progress I’m making. I was put back in my place with bed/table exercises again. There’s always a new one or one I haven’t done in ages, that reduces me to laughter because I become a lump of noodles. (I stopped getting frustrated or discouraged by similar movement limitations a long, long time ago. Laughing at myself lays a positive track for when I try again.)

Keep on working and playing. Many thanks to my spinal cord and brain for being so plastic and accommodating. I love yous!

* Normally, I place a zero to the left side of the decimal point for values less than one. Here, we’re just gonna see who’s paying attention.

** This is a physical, yet still mentally rooted, illustration of Dr. Lou’s maxim:
“It’s not the load that breaks you down – it’s the way you carry it.”

# cue (music)”Moving Right Along” (/music)

I pick up my first certified orthotic device in the morning. I may be a late entry in the London 2012 Track and Field events. Stranger things have happened.

In the span of the past 22 years, while intra-cranial, brain stem, and peripheral nerve tumors succeeded at punching tickets for many world petri-dish tours (and many other tumors happily hopped with Przybysz), the former* dumbbell-shaped tumors, particularly in the thoracic region of my spinal cord, were generally happy with the spectacles of neural activity spurred by the over eight times of losing and rebuilding of my legs/walking**.

I am truly blessed to be alive, and to have this present opportunity of building up some targeted support areas prior to surgical intervention. Tomorrow commences our weekly sessions at the site of the trifecta rebuild of 2009.

I’m at peace with all the cells in my body. I work with them, they work with me. Like any relationship, it’s all about respect and reciprocity.

Move this!

* They are now dendritic and inhibiting the flow of spinal fluid.

** Cane on campus, at 18? Liberating. The joy of walking! Golf cart stories? Priceless!
Acting as a twenty-something example for elderly neighbors who were reluctant to use mobility aids? Down with stigma; all hail function!

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.

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