Our stories intertwine . . . overlap . . . run into each other, as we chase the dreams in our hearts; the longings of our souls.
As we share our stories, we find ourselves singing along to the same song; melodies of life and love; pain and suffering.
Words of truth reveal our shine and sparkle, and reflect that of others. I share my bits and pieces here, in hopes that others will recognize the shine within themselves, as the light reflects.
By mid-March I will know if I have Huntington’s Disease.
I watched my Grandfather die from it. My mother has it, one of my brothers has it, the other three of us have not been tested. I’ve decided it’s time for me to know.
I’m not going to discuss in this post what it is. You can google it, if you wish.
It’s a very unpleasant genetic neurological disease.
I won’t explain now how they arrive at the number, but if your test results are 36 or above, you have Huntington’s.
It’s not one of those deals where you may get it if you test over 35. You WILL become symptomatic at some point, though there’s no way of knowing when.
My mom’s and brother’s numbers were both 41.
My mom had late onset (in her 60s) and my brother appears to be on a similar course, since he has no symptoms in his late 40s. The “normal” is symptoms starting in your 30s or 40s. Life expectancy, once you start having symptoms, is 15 – 20 years. Longevity is not always a blessing!
As many have pointed out, there are a whole lot of other things that could take us out sooner, other than the Huntington's. No one knows what’s around the bend.
My family has also experienced blessings as the result of this illness.
I think my parents might be enjoying life now more than ever.
I don’t think I have symptoms, but it’s a little tough to tell, since I already have chronic fatigue syndrome.
Anyway, this is my informational post, to give a heads up.
I’ll be posting thoughts and feelings about the approaching test, and thoughts and feelings once I know the results.
A WHOLE LOT of thoughts and feelings if I test positive, I expect!
I know that humor and living in the moment will be very important (as they are for us all).
I’ve decided to put an “HD” in parentheses after the titles of any posts involving Huntington’s, since some people might find it difficult to read.
My head often feels like there are a hundred or so different thoughts and ideas bouncing around in there, trying to get out. Sometimes I feel I'll go a bit crazy if I don't get some of them out of my brain and onto a page.
Consequently, lots of stuff pours out pretty quickly, often resulting in longish posts.
I expect I could write more eloquently, and more precisely, if I slowed it down, but I don't have the energy for it.
As I've lost, or let go of, more and more of the things which used to define me, the free-er (that's how you spell it. I checked.) I've become. So, I intend to continue to blog with reckless abandon, trusting that if someone's meant to read a particular thing, they'll end up finding it.
And the ones who don't enjoy reading my mostly unfiltered thoughts, or find it too wordy, will just not read, which is quite alright, as well.
Whatever the case, it will be a little quieter inside my head, which I will appreciate immensely. And, as I've mentioned to some, it helps me feel a little more connected to the world as I type from my bed.
What about all the horrible things in this world? What about the famines and the floods? What about the orphans? What about all the children who starve to death? What about all the women who are raped or beaten? What about the parents who abuse their children? What about child slavery? What about your teenage child out doing drugs, and who knows what else? What about your spouse who only has bitter or hateful words for you? What about the loneliness? Or disease? Or loved ones dying? Or your precious child, spouse or sibling in Iraq or Afghanistan or some other dangerous part of the world? Or the empty arms left by a child who's died? Or watching someone you love suffer and there's nothing you can do about it? This list could go on without end.
No answers coming from me on this one.
But, I have a question.
Why does it bother me when someone else is hurt? Why do I suffer when I learn of the sufferings of total strangers? Why are so many of us feeling so much distress right now with the many horrendous things going on around the globe?
Because we are connected. Because at our core; in the middle of each atom; each molecule that makes up who we are . . . and in the center of wherever our soul abides . . . is that seed of the knowledge of what is meant to be. Love. Connection. Joy. Goodness.
"The Shadow Proves the Sunshine" (Switchfoot) We couldn't see the shadow if there wasn't a contrast with what we know is supposed to be. How do we know? It's in our DNA, or something. We just know.
We feel the wrongness; the disconnect. Those who don't feel the hurt; don't suffer with others, have been damaged in some way; hardened.
(I do not mean to say we should be continually suffering with everyone who is suffering; we'd probably all go mad! There is such a thing as "loving detachment". It is possible to care for someone, without experiencing every pain that they do. Much of the time, I believe this is the right and healthy choice. Sometimes the right choice is to suffer with another.)
I realize I'm speaking as if I'm some expert on all this, which no one could truly be. These are simply my opinions. Take 'em or leave 'em. Discuss, if you wish.
The beauty that I see . . . the wonder that I experience . . . the ways I'm able to love and be loved. These give me hope. These help me get through the day. All I can do is focus on my little corner of the world; on the dance of which I am a part. The complete picture is way too big for me. The ins and outs of the dance of the universe . . . no way!
But, I can dance my little dance. Sing my little song. I can keep my ears and eyes open for opportunities to dance my love jig . . . or sing my melody of kindness . . . so there'll be a little less pain in the world. And trust that I am part of a bigger dance that somehow makes sense somewhere. I guess that's called faith.
Essentially, a fractal is a pattern comprised of smaller patterns, all identical to the original. Each smaller pattern is, in turn, comprised of smaller identical patterns. And so on and so on. It, of course, also flows in the other direction. The original pattern is one of many other identical patterns fitting together to form an even larger form of our aforementioned original.
"Fractals are typically self-similar patterns, where self-similar means they are "the same from near as from far"
Fractals may be exactly the same at every scale, or they may be nearly the same at different scales.The definition of fractal goes beyond self-similarity per se to exclude trivial self-similarity and include the idea of a detailed pattern repeating itself.*
I view the universe as a form of (an imperfect) fractal . . . the physical and spiritual reality within which we live. Layers of energy and reality, stretching eternally inward and outward. We contain myriad patterns and rhythms, even as we are contained by and comprise others.
I refer to it some in "The Eternal Dance" post. Each of us is part of many rhythms . . . we play many different roles . . . touch many lives . . . dance many dances.
Within us; wow, think of all the movement and action going on inside our bodies, minds and souls! How many dances are keeping our mortal bodies alive? How many different thoughts and feelings are swirling around in there, continually changing and rearranging, to somehow be us?
All around us . . . nature . . . the universe . . . all the unseen exchanges between souls . . . between us and God, whatever that might look like or feel like to you . . . or, if you don't believe in God, whatever you put in that place within, which reaches out and beyond . . .
One can always go more deeply inward; physically or spiritually. One can always go further outward; physically or spiritually.
Vastness on the microscopic scale . . . vastness on the universal scale.
And here we are in the middle.
Each of us dancing to different beats; different patterns . . . often unknowingly feeling the rhythm of life around us and moving with it. Sensing the rhythms of those around us and joining them for a time. Sensing the rhythms and guidance within . . . listening and moving with them, or ignoring and moving in dissonance, causing disruption . . . pain . . . confusion.
Sometimes we know, feel and rejoice in the beauty around and within. As we grow in love, we grow in the ability to hear and feel the dance of Love, for this is our Source: Love.
I believe that the core; the center of everything is Love. I believe the heart and foundation of this existence is goodness, harmony, connection, bodies/energies attracted to each other . . . all sorts of attractions to be found in this universe . . . forces . . . energies . . . it all works together. It ALL works together!
Love brings harmony. Compassion matches my steps with yours. Kindness brings my eyes smiling into yours. Yes! The dance of love. All that is good. All that is beautiful, is part of this dance. Many things we think not beautiful; not wonderful, are also part of this dance. Many things! (Oh, how I wish it were not so. But, the dance would be lacking without these "ugly" bits)
Remember. Love always. Embrace and move in rhythm with the dance you've been given. Listen! It is beautiful, the music we make, though our ears don't always fancy the sound. See! So gorgeous the tapestry we weave with our interlacing dance steps.
I rejoice in the miracle of movement and life within me. I rejoice in the miracle of movement and life around me. Indescribable, mind blowing . . . no words!!!
Each blade of grass. The grace of a doe with her young fawns. Deep blue sky of my beloved Arizona desert. The rattle of my friend, the rattlesnake. The stately beauty of the towering saguaros. The brilliant night sky. Could I not go on forever, describing the beauty of nature? Don't even get me started on the beauty and intricacies of people!
Rich and full. All is rich and full. The deeper you go. The further out you go.
So, there you have it. We're part of one huge fractal in which no two pieces are identical. Even cooler than a fractal, and fractals are very cool.
* Gouyet, J-F (1996). Physics and fractal structures. Paris New York: Masson Springer. Mandelbrot,Benoît B. (1983). The fractal geometry of nature. Macmillan. Gouyet, J-F (1996). Physics and fractal structures. Paris New York: Masson Springer. Briggs, John (1992). Fractals:The Patterns of Chaos. London : Thames and Hudson, 1992. Vicsek, T. (1992). Fractal growth phenomena. Singapore New Jersey: World Scientific. pp. 31; 139–146.
I imagined what thoughts might pass through my mind if I were that bird:
“Am I doing this right?”
“Am I boring my listeners by repeating the same notes over and over?”
“If only I were a Meadowlark, I’m sure people would enjoy my singing more.”
Self doubt . . . comparison of myself to others. The usual human things we do. (Do my blog posts just sound juvenile and silly? Why am I even doing this? Does it matter? Why can't I get my silly bird picture to show up on my facebook link?)
Of course, the bird is only living out its’ purpose and singing the song it was given. I imagine it takes delight in perfecting every little trill.
Does a Crow lament that it is not a Hermit Thrush?
Does the Eagle wish it could hover like a Humming Bird?
Does the Cardinal long for the ability to spin its’ head like an Owl?
In nature, birds, animals, plants, insects . . . they all live their purpose
Immersed in the essence of their nature
They are complete
This is not a new idea
But, I like to return to it
We so easily discount ourselves
What song have you been given?
Do you wish it were prettier?
Do you feel like a Crow in a world of Meadowlarks?
What dance were you given? Does it feel awkward?
What words have you been given? Are you afraid to speak them?
Do they not seem to fit with the words of those around you?
Each of our songs is beautiful, unique and perfect for us.
Each dance, each word . . .
Whatever our essence . . .
It is what we’re meant to be at this time
Maybe the song will change
Maybe we’ll learn a different dance . . .
But, right now, you are a gift
Right now, wherever you are
No matter how ugly or insignificant
You think your song
Whether you think anyone is hearing it Or seeing you
Sing, speak, dance, walk, be . . .
Because you are a gift to the world
You being your true self
Will give life, goodness and hope
To people you may never even know
* * * *
What bird am I now?
A quiet bird
Which I hope resonate
They resonate within me
My wings cannot lift me
But I am carried by Love
To great heights
I am nestled in sweet green grasses
Fragrant and safe
I know my song
I love my song
The full song is too great
Too intricate to be truly sung
By a bird like me
By any one bird
We all sing our bits
That’s why we must all sing our songs
Dance our dances
Speak our words
We are all part of the song of life
If you hide your part, something will be missing
Shuffle your feet, open your mouth, flap your wings
Be the true you
Otherwise, we’ll never know the beauty that is you
If you’ve got the screechy crow part, screech it out loud!
We need you!
If you’re the dancer with two left feet, stumble across the dance floor.
We need you! If all you can do is smile as you lie in bed, give us a grin. Now! We need you!
Oh, to truly love oneself.
To truly be at peace with ourselves in all our perfectly imperfect humanity.
I have come to a different understanding of perfection.
I am not broken. I am not flawed.
I am perfectly human.
Just as a bird is perfectly a bird, even though there are feathers out of place, perhaps disease in its’ body . . . it just keeps being the bird that it is.
Ever hear the story about the dad who made brownies for his children?
He described all the yummy ingredients; sugar, flour, cocoa, etc., and then mentioned that he’d thrown in just a bit of dog poop.
Naturally, the kids refused to eat the brownies. I think it was supposed to be some sort of morality lesson about keeping yourself pure . . . "the slightest bit of dirt/sin defines who you are".
I’ve applied this idea to myself and my life regularly.
Determining my value by how I measure up, comparing myself with others, and with the expectations I have for myself. Noting any flaw and generalizing it to define me.
Does a flaw in me cause the entirety of me to be without merit? Does life not going as one hopes or expects mean life ain’t worth living? Nope. (Do we sometimes live as if this is true?)
Where does value come from; the value of a human being? The sum of one's parts? Balance between "good" and "bad"? Strengths vs weaknesses?
Suppose you’re heading across the field to round up your cattle, when you spy a cow pie that for some reason has diamonds scattered through it. (You never know what a cow might eat. I guess this might be more believable if I’d used a goat. (Do think they produce pies?)
Would you keep on walking by, only seeing a pile of dung, or would you figure a way to get those precious gems out of that future cow chip Frisbee?
Am I that pile of dung, full of gems that aren’t easily seen because of my failings?
Does the ugliness I see in myself, the shortcomings that are glaringly apparent to me, negate any positives I have?
Sometimes I feel like the poop tainted brownies. That cow pie.
The truth is none of us resemble these things.
Sure, shit gets on us, shit shows up inside us, but that doesn’t make us shit.
Why am I on this earth? What value do I bring? I guess the short answer is to love and be loved.
Each of us is a precious soul, put here for some reason. No matter how we feel, how we look, what we can do, what we can’t . . .
I am here to be me. Honest, transparent, beautiful me. No matter my limitations. No matter what I can or cannot "contribute". No matter if I'm able to speak or run or dance . . . I'm here to be whoever and whatever I am, right now.
True for all of us.
If you can climb mountains: climb mountains.
If you must be cared for by others: be cared for by others. We are all gems just as we are.
Beautiful, precious gems. Look for that spark in those around you. Seek to recognize that glow within yourself. Smile at it. Feed it. Don’t get distracted by the cow pies and the dog poop. They are nothings which distract from what is truly beautiful and real. Love and truth wash them away.
Compassion . . . kindness . . . gentleness . . . for self and others will draw out the shine and the sparkle that's in each of us.
fractal from: http://www.enchgallery.com Thanks to Joshua Seek for sharing this interesting final picture with me!