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!!”
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.
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.