WORLD MOYAMOYA DAY

<<World MoyaMoya Day
Hi there,
I do so hope that today brings enlightenment to those who have never heard of this disease and that by doing that strides are made to help you who have it.
Love, me>>

…From Gini Watson (my soon-to-be mother in law):

6 May, 2015

To my family…

This message made my morning. ☀️☀️☀️

Today is World Moyamoya Day.

-I hope that each of you will take a precious moment or two from your busy Wednesday to meditate upon what World Moyamoya Day means to you or someone you know.

I ask that you take a moment to promote awareness through word of mouth and social media, or to
share this (still, mostly) unofficial day in whatever way feels best to you.

…I wear two bracelets each and every day on my left wrist: the first says “B-Cause” and below that, the second says “Stroke Happens.”

Because
Stroke
Happens.
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PRAIRIE. EAGLE. STALLION. BRIDGE.

We joke about the way my mind works. The way it bounces along, a series of musical notes, sung by a soprano, an Aria given form.

From A to B to A to D to G to C to D. And back to A.

Give me enough time and I usually come back to the beginning. (A very good place to start.)

 

I try to find my point. Like a seamstress with a needle and thread. I hold these tools in my hands and imagine where I want to go. Some days, I can see each stitch exacted with surgical precision.

 

Other times, the synapse misfires, a torpedo swerving drunkenly in the sky, unable to lock on its target, crashing instead into a tree. It explodes, a hellstorm of fireworks raining angrily upon a misty mountain range.

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Dear Diary

DEAR DIARY:

What causes pain? Are there any triggers? What comes to mind?

Keep a diary for a day of whatever words come into your stream-of-consciousness.

My doctor told me to write this down. Here goes….

 

FLARES, TRIGGERS & WHY: A LITTLE LIFE MUSIC

–LIFE ON LIFE’s TERMS.
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Welcome!

After a deeply lamented absence, Rebecca, our very own Moyamoya Girl, is back!!

We are still in the process of bringing over much of the information from the Recovery site, but you can look forward to frequent updates direct from the Busy Bee herself… This new platform is powered by WordPress and provides her the tools and flexibility she needs to keep in touch with you, her beloved readers.

So buckle up, SIGN UP, and enjoy the ride …… On the Moyamoya train!

Your Moyamoya Girl Team

“NEUROFEEDBACK, BIOFEEDBACK, FEEDBACK FEEDBACK” (Just Breathe)

SUMMARY:
Rebecca welcomes in the New Year with a pang; while outlining the PRO’s and CON’s of her present life; she opens up to her trusted, beloved community about the emotional darkness in which she’s been mired and how she is pushing to find her way back to the lightness of being which she associates with her “former life,” ie pre-diagnosis, pre-stroke.
In what has become almost a trademark comi-neurotic, meandering, pithy narrative, Rebecca wanders off the beaten path as she tells all, specifically about her experiences with “brain training,” and the challenges she faces as she confronts her innermost fears in a quest for acceptance of the devastating consequences of “Life In Moyaville.” 
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“NEUROFEEDBACK, BIOFEEDBACK, FEEDBACK FEEDBACK” (Just Breathe)

21 JANUARY 2014

2014.
Twenty. Fourteen.
BC.
—- eyes widen:
Jesus Christ when did THAT HAPPEN??!
(Sorry – for those who might be offended by my language…)

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TO CUT or NOT TO CUT?

To Cut Or Not To Cut? That IS the Question…
15 July, 2013

All the best intentions in the world get us nowhere if they never evolve into action.

-Oh, I could go a hundred gazillion ways with that introduction.

I could tell you about the multitude of vlogs (that’s video blogging, aka, The Dancing Monkey, “live”) I have shot over the past two weeks alone, and how I composed short “introductions” to each one in my own words, describing the content. I would also have to tell you that my photos -also taken very recently- have real pizzaz. They tell a story, too. But are they up here? Did I get them to you in “real time”?
No.

Nevermind the fact that I’ve spent several hours trying to get them OFF of my tablet and ‘postable.’ Nevermind the fact that I actually took the time to prepare all of them to post immediately after shooting them. Where are they? 

 

Stuck. 

So … I have that problem to contend with. This would be made easier if I had a solid wifi connection here at the hotel-motel, but I don’t and I just don’t have the energy to go sit at a Starbucks or whatevz to borrow broadband. I need help with this problem and it isn’t going to be resolved with an internet connection, anyway. I have data STUCK on a machine and I can’t get it off. (HELP, I’VE FALLEN AND I CAN’T GET UP!!!! sorry — couldn’t help that.) 

Everything just feels so HARD lately. I’m stuck in the proverbial mud. My thoughts run to: “It shouldn’t be this hard!!!”  It being life, in general. My thoughts run to sighs (yes, I sigh, and I whine, even to myself- I even indulge my inner “Eor” with a few too many woe-is-me’s).  

With the clock ticking down to MINUTES until I have to leave for my appointment, and a body full of chemicals from days of injections for CT Scans and pain treatments, I am both jittery and down. Not a fabulous combo. I think I’ve got a case of “Playing God.” I am certain Dr. Steinberg is going to tell me it’s not time to do my Right side yet – that it’s not yet time for the direct arterial bypass – and that I will be stuck for another six months in a waiting game. Or a waiting room. 

I want to apologize for my bluesy tone, but I know better. My friend Jules always says we are allowed to have days where we indulge ourselves in some “Poor Me” time. I just try not to blog when I’m feeling like this. (Do I?) 

I guess the bottom line is that I have to roll with it. Will he cut? Will he change me? Will I get better? To Cut or Not To Cut – this is SO not about hair… (or for you tweemos out there, don’t even **think** about cutting – just — don’t.) 

I gotta say — I never thought I’d be wishing to get my head opened. For serious… Am I nuts? (Don’t answer that.) Okay. Well no matter the outcome, I have a bigger game plan, options for different possible scenarios that will result from my meeting with the big guy, but that has to wait for another day. For now, it’s enough that I got this out to you guys. On Time. 

For Once. 

-Yay, me? 

Sooooo….I’ll be back soon with a big update, I guess. And lotsa stuff from a day, or two, or three ago. Time to leave. Hope I’m on time. I’m sure Donald willl get me there. He’s good like that. Wish me Luck! 

xox

Bee

PS: Did I mention that I am up at Stanford Medical Center in Palo Alto? Yeah…

NO HABLA .. or .. MY OWN PERSONAL PAPER TRAIL OF TEARS

No Habla …

10 January 10, 2013

3:30 pm

I fear I may be messing up my uber-fab super Diva French Mani by punching these words out on this blasted old keyboard. Thanks to Lily and D for the treat, btw: they not only sprung for me to get my nails did, Lilz also insisted on a Pedi. A FRENCH pedi – love the look. Wish I could afford to keep it up. Ah. Ever the cynic, me. I sound ungrateful; I know it, but man, c’mon! In a long list of I “usta’s,” I used to be able to maintain a certain level of personal regular ‘maintenance.’ The occasional massage or facial. A cut and color.

Ah, color… I’ve been all kinds of red white and blue.

And while as a guitar player, long nails weren’t my thing? I liked keeping them looking nice.

They look lovely today.

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SUPERMOON

“SUPERMOON”

(AKA – THE NIGHT SIDE of THE MOON – REDUX — And the Power of a Good Blow)

12/3/12

I can’t sleep. Can’t. Not “won’t.” Not “choosing not to sleep, because I just have to watch this stunning Moon while I can – this big, plump, juicy looking thing, shining so brightly – because it is so stunning, on display for this half of the world to see. Can’t sleep because I am in pain. Won’t sleep because I have to take in the view right outside my window.

Tonight is the night of the “Supermoon.” The night when it will, to the human eye, look bigger and brighter than ever before. (To be technical, it will appear 14 percent bigger and 30 percent brighter. I mention this towards the end of this blog.) What I think is even crazier? That this won’t happen again for another ….17 years? (That would put us at the year … 2029. I will be…. No. I don’t want to think about how “old” I’ll be. That’s just drama. I will be … fabulous. And gifted. Gifted with each day that will have passed between now and then)

(—-See? See how I turned that bit around? Lol)

But the PAIN.

Oh, go away. Just for a night.

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“ME & JOHN LENNON….”

29 September, 2012

9:26 PM PST

“ME & JOHN LENNON….”

…Where does the time go?

Really.

~Tomorrow is the 1st of October.

Hell~for half the world, the new day, new month, new season have passed, creeping by in the wee small hours of the morning for some, for others, a new dawn, and others yet, sunset: all, already well underway.

October has always been a favorite month of mine.

And not only bc it is autumn, bringing memories of leaves, swirling autumnal hues: pumpkin, cinnamon, burnt sienna, sunflower yellow, auburn, burgundy, custard, canary, goldenrod,mustard, clove, magenta, azure, brick, poppy….

YUM.

Then too, there is the simple fact that this is the month in which I was born…

I am a child of the Fall: always in transition, colorful, touched by melancholy, enigmatic, fluid, free… my thinking, crisp, my outlook, bright.

I am the child of the Indian Summer and the early Winter Storm.

I am full of the paradox and the duality which define us all, really…

I live with laughter in my heart.

I reside Within & Outside “The Box.”

I have always been piqued by the notion that John Lennon & I share our birthdate: 9 October.

How strange it is; the more birthdays which pass, the faster they seem to come …and to go.

It is too easy to let them pass without incident.

People to do, places to go.

Dontcha know?

But this year, it will not be so.

No.

~This year, I plan to celebrate. I will have a party, inviting my mishmash of LA friends…my teenage buddies, my mentors, my pals from disparate groups… girls, boys, men, women. My team and my family. My home away from home.

And for a change, I will REVEL in the joy that comes with this success: you see, I have survived yet another long year.

And I will revel too because before too long, Winter will be upon us.

And that’s a season (& a story) for another day.

xox

Bee

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