Reasons to Dance

But I'm Not Dead Yet

Ehlers-Danlos vs Now

I can do that, I just can’t do that right now.

“Not right now” has been the last 8 years. Wondering if there will ever  be another, “Yes, I can do that!” Or, has the ship sailed on the rest of my yesses?

Recently I turned 65 chronologically, and my body turned 110. I did not plan it this way. Generally losing patience waiting for the day I can get out of bed, get dressed, and go somewhere where I’m needed or at least welcome. I just can’t do that right now. Right now I can get from the bed to the couch where I lay on a heating pad or ice for 2 to 3 hours and then go through every mental exercise to give me the energy and the gumption to sit up.

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The Story of Potato

One Potato Gone

She was so beautiful, Potato. I did not believe I would ever be the best friend of such a beautiful creature, or such a devoted, loving, cuddly, funny, athletic, perfect, puppy. But, for a minute, I was.

The minute was:

     Delightful

          Exhausting

               Frustrating

                    Expensive

                          Purposeful

                               Hilarious

                                                         Full of love

                                                       And

I didn’t know if I was going to be able to keep her because she wasn’t that well trained and did her best to destroy most rugs, lawns, shoes, glasses, remotes, cords, chargers, phones… 

Etc…

The 6 months Potato lived with us, I felt deep devotion from her and towards her. I loved absolutely every cell of her being. But, she was tough. Even so, she was perfect. Continue reading

Welcome to Ehlers-Danlos Syndrome

The first time a doctor explains your entire life as the symptoms of an often fatal syndrome, you finally feel understood. So grateful to know the life long battle with constant, weird, physical attacks has a name. But you just wish it was a different name…like the flu, or cancer.

There are at least 6 things you must know and follow if you have been assaulted by Ehlers-Danlos:

1:  The first rule of living with Ehlers-Danlos Syndrome, EDS, is to learn that no one, absolutely no one, else, will understand it. Even most doctors. Like the direction of your life, EDS is mercurial, changing just to be inconvenient.

2: Blame someone in your family for all of the dislocated knees, fingers, wrists, hips, toes that you have personally pushed back into their sockets. Blaming the mother is always good, the genetically insufficient collagen that causes EDS and makes you so flexible most likely came from your mother. and grandmother, and great-grandmother…This syndrome just goes on with very little effort to stop it. Continue reading

What Remains

Does one’s worldview change if looking through a broken soul?

Which piece fell off first?

And did it break into a million pieces when it fell around my feet?

Did it trip me up

For the rest of my life?

Yes.

The answer is yes.

I tried, but never could

Put the pieces back where they made sense

While desperately concealing all evidence of evil.

My broken pieces eventually made it back together

But they couldn’t fit in their original design anymore

I became a hidden, unglued, warped, jigsaw

puzzle that hated all the everything of me.

Which piece fell off first?

I believe it was my sanctuary.

Two large hands ripped it out of my tender,

virginal soul

And let it shatter on the floor

Before I could

Catch it

Save it

Keep it

I haven’t gotten it back.

I tried to at least find it –

In case I needed it again, which I have,

Daily.

But sanctuary is tenuous

And easily elusive

To be the glue of a shattered soul.

My jigsaw puzzle isn’t strong enough

For escape

For protection

For peace

I have no refuge from the memories stored in the darkest fortress

I have never known the sweetness of abandoned passion

And I never will

I will never know my original design,

Who I was meant to be is forever lost

I only know who I became

And

This is all because,

Because you,

YOU

Were broken first

I wander in circles, never finding the end,

Looking for everything that shattered after that first fall

So I can meld back together

And walk forward in a straight line

Over

The broken shards of dignity

To see if I still

Matter

As my fragile,

Un – secure,

Precarious,

Puzzle.

I wonder if you wander in circles of shame.

Did your broken shards shatter you

Or

Was I your only victim

And you walk

freely

among

Innocence

Hello God

I’m sharing this from a friend of Kris Pedretti. It’s beautiful!

******************

Me: Hello God.

God: Hello…

Me: I’m falling apart. Can you put me back together?

God: I’d rather not.

Me: Why?

God: Because you’re not a puzzle.

Me: What about all the pieces of my life that fall to the ground?

God: Leave them there for a while. They fell for a reason. Let them be there for a while and then decide if you need to get any of those pieces back.

Me: You don’t understand! I’m breaking up!

God: No, you don’t understand. You’re transcending, evolving. What you feel are growing pains. You’re getting rid of the things and people in your life that are holding you back. The pieces are not falling down. The pieces are putting in place. Relax. Take a deep breath and let those things you no longer need fall down. Stop clinging to pieces that are no longer for you. Let them fall. Let them go.

Me: Once I start doing that, what will I have left?

God: Only the best pieces of yours.

Me: I’m afraid to change.

God: I keep telling you: YOU’RE NOT CHANGING! YOU’RE BECOMING!

Me: Becoming, Who?

God: Becoming who I created you to be! A person of light, love, charity, hope, courage, joy, mercy, grace and compassion. I made you for so much more than those shallow pieces you decided to adorn yourself with and that you cling to with so much greed and fear. Let those things fall off you. I love you! Don’t change! Become! Don’t change! Become! Become who I want you to be, who I created. I’m gonna keep telling you this until you remember.

Me: There goes another piece.

God: Yes. Let it be like this.

Me: So… I’m not broken?

God: No, but you’re breaking the darkness, like dawn. It’s a new day. Become!! Become who you really are!!”

~Author and artist unknown~

Dear 14-year-old Karen

But, do you want to survive?My mind hasn’t been able to write due to recovering physically and emotionally from too many physical and life traumas.  I hopefully have only 2 weeks left in crutches and hoping I can now try to write and put it out into the world. Because if we share the mountains we climb, our path might become a survival guide for someone’s else’s mountain.

As part of a writing class, we were assigned to write a letter to our teenage selves in 15 minutes. Coincidentally, I had just been assigned a task by my therapist to envision my 14-year-old self as if she were a young friend. The thinking being, that if I see a tender 14-year-old girl who needs help, I might be gentler on myself. This works, BTW. However it’s a slow process to change a perspective of shame that has been held for a lifetime.

Here is my 15-minute assignment, and I wrote this in public…lots of snot and tears and no Kleenex. It was a mess. I chose not to share it with the group because no one needs to see a grown woman ugly cry.

Dear 14-year-old Karen,

Trust me. It’s imperative.

You will not feel awkward forever, well, you’ll eventually feel less-awkward.

You will meet and survive love, often.

It might help for you to know that a good man will love you for who you are, who you’ll become and will find your idiosyncrasies hilarious and lovable. Charming even.

Because if you know that, it would save you from:

Dating Bill.

Because if you skipped the whole Bill thing, then you would be confident enough to flirt with Stan instead of clinging to the boy who flirted first.

Which would then save you from: Dan, Arie, DOUG! And Brian, sadly, this list is too long to be interesting.

You probably wouldn’t sleep with any boy/man who noticed you just to feel worthy.

You wouldn’t bury what the creep has done to you so far in your life for the next 20-60 years. The creep wouldn’t then have the power to destroy your hope and confidence. You could feel meant to be, rather than the mistake you think you are.

Please pay most of your attention to what is interesting to you. It will keep you from being distracted by less important activities like; drinking under the bleachers at high school football games and staring into space for hours while life happens around you.

If you take chances, for exp: listen to your dad when he offers voice lessons, actually give it your all every day with dancing and the piano…your life will be so much easier than mine and those skills will get you further.

Surround yourself with those who are happy to see you. Take some pride in something. I don’t know if that’s possible given your parents, but please cement your belief that God loved you enough to call you His daughter.

Your interests are worthy of pursuit, more worthy than feeling like you are a waste of space and your only value lies in sex. You’ll accomplish so much more and make the world a better place to survive, than if you spend most of your time paralyzed by insecurity.

Please trust me. Please discover how to believe you are worthy.

NOW.

It will save you so much pain.

Last thing, when you fall down the stairs in front of Robin Williams, laugh. It’s okay. He’ll never remember it and it becomes a great story.

 

Crap I Live Through

The day’s not over yet

Hi. My name is Karen. I’m a bit broken, but, I’m still alive…technically. I have several diseases/syndromes/injuries from an athletic life spent dancing, along with several  life-altering-violent-horrible-ness-es constantly running through my brain and body.

All of them are invisible.

On the outside I look relatively healthy, strong even. But, I’m not so much…I’m working on it though…Maybe if I share some of the crap I’ve drudged/am drudging through, I can comfort or ease or inspire someone else who struggles with these same rotten challenges.

Here’s what’s to come,if you choose to follow along:

I’ve had this horrible, sometimes exciting, adventurous, silly, beautiful, life so far. And because of that, I have a few stories of trial and failure along with a couple of successes. Most of my stories include

f

             a

                         l

                                      l

                                                      i

                                                                     g

either

                metaphorically

or

                                emotionally

or

                                                     actually

I’ve been sick or injured my entire life. Which is exhausting.  I nearly died at birth and then again at 9 months, 25, 41, 42, etc… My legs came out of the birth canal in a curious, creative design. More with a sense of experimental wonder than “In His image.” Leg braces and ballet followed which helped to straighten out my crooked design.

Dancing saved my life.

I have Ehlers-Danlos Syndrome (EDS), Lupus, Hemophilia, POTS, MCAS and a death defying sense of reckless ambition.

This is what Ehlers-Danlos Syndrome looks like. Convenient for a dancer.

I’m currently dealing with PTSD due to some childhood sexual abuse, a college stalking and rape that is currently being reviewed by the Sacramento District Attorney’s office as I’m a potential victim of the Golden State Killer. Oh and I have an undiagnosed  bi-polar mother who now has dementia. Fun memories. Memories that have just been splashing across my mind way too much lately..

Do you have any of these issues? Want to talk about it? Or hear how I’m dealing? Stick with me, I’ve probably tried something that might help you. Or will at least make you chuckle and thus save you from trying it yourself.

I’m a former professional dancer and actress. I’ve been a Rockette at Radio City Music Hall, along with appearing in a few television series and films and a ton of theater. I love everything about music and dance and acting and laughing.  I teach these things now. It is unbelievably rewarding.

“Tell a man a joke and he laughs for a second. Teach a man what’s funny about his life, he laughs forever.” Me. I said that. I THINK it’s true.

I’m hoping to offer some comfort or courage or sense of humor to find your own reasons to get up in the morning, and then eventually, to dance.

Any of these things your story too?

This movie, Monty Python and the Holy Grail,  just cracks me up! If you haven’t seen it, you might want to check it out, because there’s a good chance you will laugh out loud and there is almost nothing better than that.

I have actually crossed over, died for a few minutes, but I didn’t. I must still be here because there is something left for me to do. The same goes for you. You are here to make a difference. It doesn’t matter if it seems small to you.

Thank you  for your time.

Karen 

My first attempt to fly

Where Apples Fall

Gravity is a force of attraction. It pulls us down to earth. Not quite sure what’s “attractive” about that. Useful, yes. But, some spirits were not meant for the ground. Some were meant to climb.

When my Dad was about 85 he hadn’t yet stopped to consider his age. He was still climbing on top of his roof in freezing temperatures to clean the gutters. He was still racing his dirt bike in motocross races. In his defense, he usually won his age category, admittedly, it was a very small group. Usually, he was the only one in it.

One typical Tuesday, he climbed up an apple tree to do some pruning at the top. Later that day I got a call that he had broken some ribs when he fell out of the apple tree.
“What? What was he doing IN the apple tree to begin with?”Virtually everyone asked.
“Pruning” my mother said, as if this made perfect sense for a man of his age.  Which, to my parents it did.
It didn’t make sense to any of his neighbors though, who also called me when he fell out the apple tree. This was not the first thing he had fallen out of. I gave enthusiastic permission for his ladders to mysteriously disappear that night while my parents were asleep in front of the TV.
I was incredibly annoyed that he was still doing all of the work around their house. He was literally breaking his body and soul because everything was so hard for him to do in this twilight stage of his life. He was angry that his body hurt all of the time. He hated having to pay anyone good money to do something he should be able to do himself. He hated having to be stuck inside the house with my mother, mostly. But stuck inside with my mother who was now nagging him about everything begging to be done outside was intolerable. He had to sit and listen to an endless commentary while leaves clogged the gutters, and his apple trees grew out of control.
My heart broke a little at his predicament. I bought him a get-well card. The kind where you can record your own voice and I sang “Don’t fall out of the apple tree with anyone else but me.” He was floored. He couldn’t believe I found a card that sang that particular verse.
“Dad, that was me singing. I recorded it into the card. And I’m serious, wait until I get there before you get back up in that tree.” Which, of course he had to wait, because now he didn’t have any ladders to assist his mount.
Every single person who knew my Father was aghast that he thought he should be up in a tree trimming branches. I was so annoyed that he wouldn’t give in and absolutely positive that I would make much more intelligent choices when I reached the end of my tree climbing days.
Sadly the apple doesn’t fall far from the tree. But I didn’t notice. I didn’t notice until someone else pointed it out and took my ladders.
In the past year I broke my hip and my neck in three places. Which is actually kind of funny to me. Why three places each? Surely, one break should have been enough. Three is like I’m being yelled at by God or that I’m a victim of a faulty genetic design. These breaks are all just wear and tear from dancing.

One typical Monday, I was complaining about my father to a friend, Jonathan. As I walked away from Jonathan on my crutches and in a neck brace to go back to rehearsal for Footloose, Jonathan said “The apple doesn’t fall far from the tree.” Well, that’s humbling. 

I have never thought I had anything in common with my father. But, maybe he handed down his pride. Does pride always come before the fall? I do have some when it comes dancing. Maybe pride is our downfall, or maybe not. Maybe, it’s just loving to move, to climb, to dance, to escape the earth’s pull. Pride doesn’t seem to bounce.

It took my Dad four more years before he gave up his war with gravity and took himself out of the fight. Early one morning he took a gun out to his workshop. The workshop that housed his dusty motorcycles and formerly, his ladders. I am haunted by the shot I didn’t hear coming, even though I understand it. He had to give up. I do not. And that is where our similarity ends. 
How do we save the best for last when the last is limping along? Not sure I know the answer to this. I would love to hear from anyone who does.

I may end up just as annoying as my father. I’m clinging to the branches up in my tree as long as possible. I’m not getting off the dance floor yet. This is where I get to make a difference to a new generation of dancers. Those whose spirits were meant to climb and for those spirits that keep falling down. Maybe I can help them learn to bounce.

Standing in First. Thoughts From My Daughter

She’s not done yet. This was taken in June. A studio with a view!

I found this yesterday because my husband is making me organize my office. And closet. And hard drive (and by “making me” I mean he gently handed me a drawer and walked away).

 It’s mostly a horrible idea on his part. I was hating everything about me, and him, and my terrible life choices when I came across a paper written by my 13-year-old daughter for an English class. She’s 19 now. She’s not really dancing anymore. She’s currently in Thailand working with elephants and hoping to make the world “one step closer to a better place.”  It’s possible she learned to love the world in a ballet studio.

Dance from a 13-year-old’s perception:

Standing in first position, my feet press into a relevé as I rise onto my toes. My calves tighten; I push down my shoulders and round my arms while elongating my neck, tightening my abdominals, and tucking under my tailbone. The song, “First Arabesque”, by Claude Debussy, fills the ballet studio with perfect rhythm and my body gracefully flows with exact synchronization to the music. The world gradually disappears as I drift into a mindset with no stress, no worries; purely focusing on the moment. In this moment, I feel beautiful and free. I am in complete control, and for a little while, I get the feeling that this is who I am supposed to be.

Whether I am practicing in the ballet studio or performing on stage, dancing is where I feel controlled, powerful, and peaceful. It allows me to express any emotion through grace and precise movement, while dis-enabling my thoughts to drift to any other place. I love the feeling of my muscles tightening, pointing my feet, pushing my legs to the peak of their flexibility. I don’t prefer to be doing anything else while I am dancing, and I can’t imagine a contented life without it. I attended my first ballet class at a young age of two years old, loving the classical music, tutus, ballet slippers, and acting like a princess. At the end of class, each ballerina earned a sticker if we tried our hardest and could perform one move we learned during the lesson. Early on I would dance to earn the sticker, now I dance for myself.
In a world of chaos, we find the simplest of things to be peaceful. I am a firm believer of finding peace, and I dance for that sole purpose. If I can make something beautiful and peaceful, then the world is one step closer to a better place.

There’s not a single word to describe the feeling that rushes through my body when I am performing on stage. My heart races to a speed that takes my breath away, and my mind is completely aware of everything taking place in my muscles. I experience the exhilarated rush of being on a rollercoaster, the grace of a swan, and the power of a rocket. Every part of my body is working at the same time, while exploiting my mind. No sport requires an athlete to utilize every muscle at once, while portraying that sport into a work of art.
Dancing demands inhumane strains on the body: forcing all weight onto the tips of the toes, flying into the air, and dropping onto a knee from numerous pirouettes. Pushing my body to the extreme is thrilling, and although dance may be emotionally draining at times, I wouldn’t want it to be any other way.

by Hannah Burns




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