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
I’m sharing this from a friend of Kris Pedretti. It’s beautiful!
Me: Hello God.
Me: I’m falling apart. Can you put me back together?
God: I’d rather not.
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!!”
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:
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.
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.
The horror that invades my mind. Up until a year ago I’d managed to compartmentalize that which wastoo horrible to remember.But, a little over a year ago while sorting through generations of family photo’s everything came back at me in a flash.Continue reading
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
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.
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.
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
My part of the eulogy for my father, Carroll Stanley.
He just decided he’d had enough and it was time to go home. As usual, he took matters into his own hands. It was a tragic and unexpected end to his 89 years here.
Posting this on my Reasons to Dance blog because it was ultimately my father who taught me to dance, not the steps, but the reasons underneath the steps.
Thank you all for coming today to say goodbye to our Dad. I know we all appreciate greatly the ease and the sweetness you brought to his life.
I don’t know what my father dreamed of becoming, or what he was afraid of. I know what he hated and what he liked.
He liked pretty girls, and dancing with pretty girls, and playing softball, and Hogan’s Heroes, he laughed every time he watched Baloo in The Jungle Book sing The Bare Necessities. We went out for cheese burgers and fries, with a root beer for me and a cup of weak, black coffee for him. The Jungle Book and Cheeseburgers were our tradition.
He loved to laugh. The hardest he may have ever laughed was during the Blazing Saddles campfire fart scene…He and my brother Mark laughed so hard they literally fell off their chairs. And cried. Every single time. His was a sophisticated humor.
He loved chocolate covered cherries and peanut brittle. He liked me to tell him jokes. And when I was 5, he had me sing King of the Road by Roger Miller for his friends. More than 32 times. He laughed every time I sang “I smoke old stogies I have found.”
He had a great laugh.
When I was writing his obituary I found out he went back and finished high school after he finished fighting in WWII. Jeff Morse told me this on Facebook. Jeff’s father, Bud, said all of the high school boys were in awe of my Dad, a World War II, decorated hero coming back to get his high school diploma. It was the first I’d heard of it.
My Dad taught me that stopping to slide down a ski slope or speed across the top of a lake in a boat that may or may not quit running in the middle of the lake, is a worthy pursuit.
That reading the same book, Cleo, every night to your daughter for years is not just something to be endured but a source of bemused wonder.
That inviting your daughter to play catch on a Wednesday afternoon in the backyard, or letting her dance on your feet to her favorite song Winchester Cathedral, and then to tirelessly throw her high in the air so she could touch the sky, is the best way to stop time.
From my Dad I learned that stopping to play makes life an adventure, something to be learned and survived. It may be because my father taught me that fun is the best thing to have, that I have made my “living” out of playing. And through his earnest pursuit of a thrill or a laugh, he left a legacy of joy that will live on.
Working only existed for my father to interrupt the constant renovation and near finishing of a boat or a motorcycle, or an antique car, or four. He retired to “fish” and to race motorcycles until he was 82, and to coach girls how to pitch a no-hitter – and to make several violins for a granddaughter in the hope of making her a perfectly working, beautiful instrument.
Nothing ever worked easily for our family. Most transportation or modern conveniences had to be kicked, pushed or sworn at vehemently in an encouragement to start. But that violin is exceptional.
He always talked to and listened to kids. He liked to hang out with us, to play games and to dance and was quick to hand over money for pinball so everyone could play as long as they wanted.
When it was time for me to stop dancing and playing catch and skiing and failing at pitching, hunting and fishing, I left and went to college. When I was having too much fun in college, he up and sent me off to Europe. With a nun-to-be. He thought I needed direction.
Which I did, in fact, find in London. I saw the musical “A Chorus Line” and knew instantly I wanted to be a dancer and play for the rest of my life. And that is exactly what I did. This is not the direction he was hoping for.
Dancing is a trivial life on the surface.But, I’ve learned that it’s the trivial things that make us glad to be alive. It’s in these tiny trivial pursuits that we end up having a mostly unintentional effect on the lives that end up around us.
I believe my Dad started the fun in me and because of that, this is what he leaves thru me:
My daughter Hannah is a dancer.
She wants to be an occupational therapist: which means she wants to work and play with special needs kids. She listens to kids. She is a fun, kind soul.
Talia, my youngest, stands up on a stage with her Dad and makes people laugh…and laugh just as hard as at the campfire fart scene in Blazing Saddles.
She has a violin made for her by her grandfather. She no longer plays the violin, choosing Uncle Mark’s guitar instead, but she has the honor of knowing her grandfather spent hundreds of hours carefully crafting a beautiful instrument just for her.
My Dad heard that Talia wanted to play the violin and with generous determination gave Talia more than an instrument, he gave her desires value. Talia in turn, has also become a tender, generous soul.
I have now taught hundreds of people across the world to dance, to pretend, and to believe that fun is the best thing to have.
My husband and I went to Haiti to teach volunteers new games to play and how to make puppets and to get up and dance with the littlest earthquake survivors.
Those games and puppets then went to the Philippines to play with the typhoon victims allowing for fun amongst the ruin.
One man, through one person…and that’s just me.
What about the high school boys who admired his dedication to return to high school? Where did that inspiration lead? And the girls he coached in these last years? How will his passion be translated thru them?
He didn’t know how far he reached.
Well, I danced with my Dad on my wedding day to Winchester Cathedral. I did not stand on his feet. We had fun.
“There is a time for everything, And a season for every activity under the heavens:
A time to be born and a time to die,
A time to weep and a time to laugh,
A time to mourn and a time dance…”
For this time, rest in peace Dad. We’ll catch up later when I get there over cheeseburgers and The Jungle Book.
My Dad. I don’t know what he dreamed of. I know what he hated and what he liked. He liked me.
“I could have missed the pain, but I’d have had to miss the dance.”
Brilliant. Amazing. You’ll get to go around the world.
In the next almost five minutes you get – Life-changing perspective on the universal, joyful, silly, beautiful, dance transcends culture and boundaries and laughter is the shortest distance between two people, but so is dancing – moments.
I live in a suburb next to an enormous Intel plant in a desert where I don't belong. My neighbors are techies, blue-collar football fanatics, gamblers, bankers, parents, sky-divers, nurses, pilots. I'm a dance, music and acting teacher, performer still, mother and wife hoping to be kind in this corner of my non-indigenous environment. I actually like living here. Most of the time.