Correspondence


“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.”

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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,

“Even when we deal with major threats, we have the choice to remain receptive
to healing. No expectation. Just simply being a welcoming vessel in the
present state we inhabit. We are all connected, capable of enormous
compassion.”

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.”

It just streamed out in this form, with these examples, when I composed an email reply. The basic premise and practices are more generally applicable. Chalk it up to the always present, but humble empathic reservoir comprising inner peace. Lest we forget how important it is to keep feeding virtuous cycles of socially shared thoughts and behavior.

“Well, I figure it doesn’t hurt to try to keep up on what we can with our senses. I’ve been dealing with eye and vision issues all my life, so it’s always been a priority. Nothing’s guaranteed or a given–just doing the best I can with what I have.

My balance is more dependent on vision than the other way around. But, I notice my balance in poor lighting and with my eyes closed DOES improve as I practice more–even if it is just the time I am leaning against the sink counter with my eyes closed. Or, the way I pay attention to what it feels like when I am getting dressed, leaning, or picking things up from the ground. Always a work in progress! I think having to retrain to walk so many times, while vision was poor or double after surgeries, helped me to tune into gravitational pulls, and orient to the surface and incline directly under me AND to the center of the earth. When we have slow recoveries, paying attention to the parts that feed into the whole, and not getting fixated on speed or appearance, probably open up how we perceive the potential of improving. I’ve always been receptive. Never perfect in execution, but it does pay to keep trying and NOT use labels or characterizations that are limiting and discouraging.
;-)

We do very well. We are fortunate because we always have much to lose and gain. We decide which angle to focus. I LOVE the feeling every time I sit or stand on my own. When I couldn’t, I didn’t get down because I couldn’t do those, because I was happy I was breathing and had some feeling, and so on.

I hope you don’t assume there’s only one way to go–decline and loss. It may take time and attention on aspects of daily living that used to be automatic, but every bit adds up.

Hugs, Jamie”

* I would edit “never perfect” in another context. We are often perfect in a moment, without awareness of that perfection. (Revert back to main point.) Every little step!

I {HEART] TEETH
Sheet of notebook paper from the 1980s.

(text of the PDF letter posted above follows, and then contemporary commentary)

Dear Tooth Fairy,

I know alot of people are loosing thier teeth, because of the Thanksgiving rush, but please give me $1.50 instead of $1.00.

P.S. If you dond have change and you only have $2.00 or twenty that will be fine.

I DON’T Have ALOT LEFT SO Depend on Nicholas, my baby cousin, he has lots!

***** original spelling and other errors preserved from original document

I still sort of remember how the P.S. was an afterthought. By this time, I knew the connections with the tooth fairy, and that being too overtly greedy would not work.  I love how I framed the option of rounding up to larger denominations as being satisfactory and convenient. But that’s after my first recall was one knowing that this was during my Monopoly-mastering stage, so I didn’t realize I was so diplomatic in the request. (I think I had another note when I was cashing in a tooth with a silver filling, but I’ve never come across that one.) The reason I didn’t have many primary teeth left had a lot to do with the missing top-front four, and another instance when I lost two teeth on the same day. Look how smart my parents were, though—they knew the teeth supply was limited, and so funded the tooth fairy trade. When it came to school, they never destroyed the intrinsic motivation of learning (or inadvertently raised the pay-off for cheating) by paying us for grades.

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