The Circle of life -

Size matters. Or mattered to me as a young girl.

When living in NJ from ages 4 - 12 we lived about a half hour outside the city on an acre of woods. Yes, an acre ,,, also known as a kingdom, or princessdom, as the case may be. There were some strict rules regarding the access to and exploration of said woods ... as in I literally could not cross the line.

The line was actually the curve of the long gravel driveway which divided my backyard into unequal thirds: "the circle, the backyard, and the woods." I can't remember crossing the driveway by myself until I was at least ten. My mother never accompanied me on my jaunts across the line into the backyard and/or woods. It was my father who was my companion and guide. Being the early 60's this makes sense. My mom was probably in the kitchen whipping up some meatloaf and mashed potatoes (one green vegetable, one yellow) while my dad was in charge of All Things Lawn and allowed me to go into the backyard with him when he was cutting the "grass" which were really assorted weeds. The true grooming only took place within the sacred circle.

The circle itself wasn't even a circle, but rather a semi-circle immediately to the back of our house. It was manicured to within an inch of its life and was bordered on the driveway by a "garden" resplendent with ginko trees and perennials. To this day I can't pass a ginko without being transported to my back yard in New Jersey and have been known to pluck a ginko leaf from along the streets of downtown Chicago and sigh, "OOOH, a GINKO!" Because despite the fact that I am not a Fan of the Ornamental, ginko trees fill me with longing for New Jersey where Real Housewives did the laundry and took care of their children, and Real Husbands worn suits and ties, and took the train to work. It was within this very border that I fell in love with gardening and perennials, and harvested my first vegetables. I learned about co-planting and that marigolds had a purpose in life. I watched big fat black ants die because of their love of peonies. I had my first camping adventure there, stepped on my first slug there, and caught fireflies in old mayonnaise jars because everyone recycled by reusing. The circle was the first thing I saw when pulling up my roller shade in the morning, and the last thing I saw when pulling it down at night.

I loved it, and I hated it ... my perfect prison.

So about those "Editorial Comments" ...

My mother always said having a lot of time on one's hands can be a dangerous thing. Something along those lines "was the devil's play thing," Too much time? Too much thinking? Too much something.

Having been raised by introverts and being an introvert, I tend towards "thinking" anyway. Which in and of itself isn't a bad thing. Or a good thing. It just is.

But what one thinks about? What one dwells on? Now THAT can be positive or negative. Being a Christian by choice, and quite unashamed of the fact, I have to ask myself, "What Would Jesus Do?" Now there's a loaded question ... literally and figuratively. Politics and marketing aside, it really is a biblical question. A veritable litus test.

So ... with all due respect, what WOULD Jesus do if chronically ill? Ok. Lemme get personal. What would Jesus do if He had ME??? No doubt, He would be thankful its no longer be called by its former misnomer, Chronic Fatigue Syndrome.

AND THERE IT IS!!! Without even trying I reached for the editorial comment! The reality is, who knows what Jesus thinks about the name of the above mentioned neurological disease. Really. But what would He do? Would His lessons be any different if He hadn't been ... what, broke and scorned?? Ignored? Humiliated? Unbelieved? Disrespected?

Whoa.

I've already admitted my editorial comments concern me and recognize they stem from my own discomfort with a situation. I don't hearing snide editorial comments from others ... so why do I tolerate it in myself? Yuck. Who knew this entry was going to be so cathartic? I need to eliminate editorial comments from my speech which means I need to eliminate editorial comments from my mind. Which means I have a whoooole lot of thinking to do.

Upon request -

This is for Vito ... who, after listening to me sob into the phone last night, suggested ways I occupy my Very Long Days (which run pell mell into each other.)

Yes, I realize those words in parenthesis constitute an "editorial comment." One of the four sons I will no longer discuss in public has not "accused" me, but pointed out several times recently that I make said comments at the end of otherwise none judgmental statements. This very son actually makes a lot of sense and when he speaks, I listen. Actually, I seriously listen to everything the no longer discussed sons mention, if only because I find them unusually wise. Not that they always act maturely (they mostly do) but because they say Good Stuff I don't want to miss.

So ... I've been giving serious consideration to the Editorial Comment. As someone who comes out strongly against whining and passive aggressive behavior I'm having to recognize that the Editorial Comment sidles nicely into those ranks. Which is not good news for me!! Meaning I either have to own up to being both whiney and passive aggressive at times, or knock it off. I'm gonna go for the latter.

BUT HOW!?

What does one do when trapped?

When the Sons were young and overcome by emotion I used to say to them, "Tell me with your words." A lot of the times they didn't HAVE the words for what they were feeling/thinking so rather than using a verbal label they'd paint me elaborate and vivid word pictures ... and end matter-o'-factly with, "Yeah, it's like that." And, truth be told, I could usually identify with "that" be it a feeling or a thought. Sometimes I'd try to give words to it but a lot of times I just said, "Ohhhh, honey!"

This is what trapped feels like:

After a summer of pretty much being housebound (if not bedbound) I decided, after a successful drive to a medical appointment, to push my luck and go for a "drive." Yes, a drive. I haven't really driven much this summer but am always loathe to lose a skill or chutzpah. So off I went with Laketown in my heart and mind. Ok, I'm going to admit that the traffic on the highway was a WHOLE lot more visual and auditory stimuli than I was planning for. I had to employ all my best "focusing" techniques as well as my very best "never-mind-about-your-heart-rate-do-not-panic" techniques. Ten years ago if I was told this would be my life and thought processes I'd have narrowed my already squinty eyes, dropped my mouth open, and glared. Yet here I am.

By the time I was off the highway and onto the two lane heading for The Hill in Laketown I was back in self congratulatory mode. I may be my own worse critic but I'm also my own biggest fan. I've learned not to expect accolades from anyone, and so if I need them I've got to give them ... to myself. After a while of staring at the exceptional nothingness that is Laketown, I started home. I was tired, I was dizzy, and I had to admit to myself that it was just plain foolish to have pushed myself. I made a deal with myself (and God) that I wouldn't be so silly again and eased the car off the two track and back onto the WHAT??? I CAN'T GO NORTH ON THE HIGHWAY!?!?

The road had been completely blocked off excepting the southbound ramp and I had no choice. And I am soooo not a fan of no choice!!!! If I had a nickel for every time I've asked "what are my options" in the last 56 years, well ... I wouldn't be living on disability!! I will logic to kick in. I've driven this high way at least a million times BY choice and practically know every square inch of it until its end. But this is NOT calming to me. I'm driving further and further from my "home" and I'm feeling more and more unwell. I considered pulling off but there aren't any places to do so. The "overactive imagination" of my youth and every "what if" in the universe plays across the screen on the inside my head. What if I have a heart attack? What if my blood pressure drops so low I pass out? What if I have visual difficulties? What if I can't make it? Who will find me? Will I crash into anyone? Will they be hurt? I DON'T WANT TO HURT ANYBODY? i just want to go home now

Shaking and breathing hard I make it off the exit, although am somewhat disoriented. I want to pull into the local Burger King, whip out my phone, and call for back up. Only I don't have anyone to call. Can I REALLY call the above mentioned son and demand he come get me because I'm flipping out? No, not really. Can I REALLY call Vito and sob? Not the wisest choice. So I sit in the parking lot at Burger King and give myself the mother of all pep talks. I chat a little bit with God and get back on the highway going in the opposite direction with my heart in my throat. Less than ten minutes later I am in my apartment parking lot pulling into my designated car port. I turn off the engine and sit gathering the strength to walk the less than 100 feet to my door without thinking I look like jello in the sun. (WHY do I care what I look like to others in a moment like this? Who the hell knows.) I breathe in, breathe out. Breathe in, breathe out, I congratulate my diaphragm on a job well done. "GOOD BREATHING, Body!" I congratulate my less than stellar Ability to remain calm. "You did it, Ability! You got home!" I not only recognize that this was No Big Deal in my other life, I recognize this was not a "deal" in my other life. But it is now. Every victory, no matter how small, get chalked up in the "Win" column. And I find victories where I can.

Trapped. Yeah, it's like that.

"OOOHHHH, honey self! I know just what you mean."

So. I'll have to get to the "Editorial Comment" thoughts another time. Right now I'm going to show my honey self some tender loving self care.

On Whining -

It's been pushing four weeks since I've written and not because I have nothing to say. It's more about not having the strength with which to say it.

While I have always detested whining in any form, I find I dislike it even more now. NOT because there isn't something to complain about and NOT because I would quiet anyone, least of all myself. It's mostly because I hate the way it sounds ... either verbally or in written form. There's nothing that makes me want to roll my painful eyeballs more than reading "I had to drag my exhausted body to ... to ... and NO ONE appreciates how hard it is ....."

Really? I do and we do. "We" the community of those with neuro endocrine immune diseases. We really, really do. We know all about not being able to eat, or sleep, or have troubles swallowing. We know all about loss. Really. We've lost pretty much everything and recognize there's more to go (literally and figuratively.) We've begged, we've pleaded, we've sobbed ... we've attempted to make deals with God and the Universe. We've been willing to accept blame almost anything if we could ONLY have our health back. Really. We'll work until the second we draw our last breath. We promise never to have a penny of discretionary income. We promise to never touch a drop sugar/alcohol/trans fats/red meat/whatever is demanded, again. Really.

But the reality is, it's not about that. It's not about us as personalities. It's our bodies. It's Just Not Personal. At all. Letting go of that is a huge process as most of us here in the U.S. of A. as believe that we have a say in our own destiny. Isn't that the American Way? Life, Liberty and the Pursuit of Happiness?

But define destiny?

What I have learned is that my destiny is inside my self. In my thought processes, in the willingness to let go. It's there that I have choices and can pursue happiness ... and believe me, I will.

It ain't easy being Zen -

First of all, I have had the relapse to end all relapses the past month.

I will say if I was watching this happen to someone ELSE I'd say the following.

"Good grief, of course you feel wretched. Within the past year had kidney stones, sold your family home of 2o years, moved into an apartment, gotten your heart ripped out through your nostrils by ... oh never mind, and then spent the winter having five more kidney stone procedures with recurring ER visits. THEN w/in three weeks you saw your traveling musician perform and went to another son's college graduation in another state (literally.) Who do you think you are? SUPER HUMAN? Uber momma? Yeah? Well, you're not. You're a very sick woman eking out an existence on disability whose life has been turned upside down with No Sign of Rt Letting Up Any Time Soon. I"m putting on some tea and getting some scones. You. DON'T MOVE A MUSCLE. You just put your head back down on that pillow. NO. Do not move. I'm going to wash your sheets, empty your cat box, and stock your fridge with healthy "grab and go" food, and what. Do you want me to do your nails? Because I will!"

BUT ... of course since I AM that woman and can only summon up the strength for the occasional cup of tea I mostly sleep on ... well, you just don't need to know that. Yet, I really DO think I should be able to care for myself the way I'd care for others. But it's not happening. Not any time soon if any time At All!

I think it's all very well and good to Live Zen, but when the present is exquisitely painful (literally) what's so wrong about not being there? What's so wrong with zoning out in a haze of pleasant "healthy" memories? What's so wrong with recounting the loves of ones's youth? Or the children that are now adults? The gardens once sooo well tended and planned for all winter long. What's so wrong with that? What's so wrong with seeing a picture of a pasture in the mountains and envisioning oneself stretched out there under a warm (no humidity!) summer sun? Imagining not yet conceived grandchildren? Imagining strong and healthy offspring meeting their personal and professional goals. Can a disabled momma ask for more? I think not ... and it's pleasant to think about. Beats the bejabbers out of wanting to chew off one's legs.

I'm tired now. Ok, I'm tired always but I've been in bed for three hours post sleeping pill and have yet to fall asleep. Of course I'm typing and a cat on my shoulder isn't helping either.

So goodnight, Larry. Goodnight, computer. I'm going to shut out the lights now and do some not sleeping. As I day dream about raising sheep (something I thought I might do post child rearing) I will pay special attention to my ceiling fan and count it as Zen.

Lost count -

The mindfulness is NOT going well.

Day 2 - Mindfulness

Exhausted beyond all belief I took the concept of "mindfulness" to heart today. I found that choosing to focus on some sensory moments in the present helps me not worry about the future as well as not focus on the very present negative.

Some of the things I focused on today include ...

Vito's smile

Larry's fur

Two unnamed yet familiar behaviors of my sons

The taste of fresh strawberries

My DILs nail color!