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"why are we zebras?"

   why do they call us zebras, we EDSers??  because first year med students are taught that if they "hear hoofbeats, look for horses, not zebras".
   this means to look for the obvious causes first. this is also the reason why many people with rare conditions are often misdiagnosed or undiagnosed, do not receive the proper treatment, and are often made worse by the treatments they do receive. it is too late for me. i just got diagnosed this year, although i've been a mess for 49 years. i was born symptomatic and injured horribly in gym classes, yet it was a classic case of "blame the victim".  because the doctors couldn't find what was wrong, i was a hypochondriac.
   by the time my daughter came along, my grandma and i had figured out that it was at least something that "ran in the family". now my daughter is 24. i tried to protect her from injury, but not knowing what was wrong was horrible.  i saw her in such pain as a toddler, and suffering with scoliosis by the time she was six. 
   now she has a daughter too. my little miracle had one of her own! while this makes me incredibly happy, it also worries me sick. i hope my daughter grows to accept her "zebrahood" and protects her mobility as much as she can. i pray that my granddaughter doesn't have EDS. she's 3 1/2 and super-bendy, but little kids usually are. she hasn't shown any symptoms, which delights me, as her mom was crying with "growing pains" by her age.

              this happy little girl should never have to worry about a zebra being anything but a toy.

   i want her to be able to travel and see the world, the way i did, only without pain or hardship. this is an experience from my travels.

                                                  not exactly what i would call "accessible".





       from the song, 'carey', by joni mitchell, my life's goal: "maybe i'll go to amsterdam, or maybe i'll go to rome, and rent me a grand piano and put some flowers 'round my room".




                                    made it here first, in 1979, and sang in the Concert Gebouw

                                   

                           eventually i also made it here, in 2003, when i sang in a mass at St Peter's

                    i want my daughter and granddaughter to be able to live out their dreams, too.

cadencejubilate sent you a video: "Joni Mitchell - Carey (with full intro)"

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cadencejubilate has shared a video with you on YouTube: love the intro with the story behind this song. "maybe i'll go to amsterdam or maybe i'll go to rome" Joni Mitchell - Carey (with full intro) Joni Mitchell - Carey (with full intro) full concert : http://www.youtube.com/view_play_list?p=C14FDDCAB2DA03FB song 9 (cut's 9 &10) from (Kept By) Her Own Devices a live concert sometime in 1972 great sound !
© 2012 YouTube, LLC 901 Cherry Ave, San Bruno, CA 94066

"kinds of desire"

 
    one of my dear friends, bd, is an adjunct professor of art and spirituality. she's currently preparing for a class on "artistic expressions of religious experience", and soliciting contributions from her friends. her latest request is for artworks that express "the religious experience of desire". i sent her the video of the mozart  "ave verum corpus".





    it always feels like reaching for heaven when i sing it. thinking in particular of a tour in quebec, singing it with my friends on the top of "mount royal", at St Joseph's Oratory. above is a photo of the outside. here is the "chapel" where we sang. we were in the organ/choir loft in the back. we knew the piece and each other so well that it came to life in a way that i hope dear wolfie would appreciate. 












   above the chapel and the cathedral is the little chapel of brother andre (may be St Andre now). people came to him for healing. they left their crutches and canes behind in faith. i was 3 weeks out of a full reconstruction of my right knee, hiding the giant brace under my gown, and walking with a cane. my friends teased me about leaving it there.         * some people asked why there were only children's crutches there- dumb tourists. people were much smaller then.













 

    the question, of course, set this philosopher off on the kinds of desire we experience. on the face of it, i desire to break my shackles and get out of this room! my corporeal "tree", sadly, is an illusion, like this one. though my will is strong, i am fleshed out with ephemera. i have to release "desire" like a balloon every day, the one made of futile regrets and wants.                      lucky me, there are many things in my life that have nothing to do with that kind, with traveling and touring and "going".    like being.

                                                                                                             

   my desires are for what i already have, which is a very old prescription for happiness. laughing with my daughter will never be out of my reach.  
                                                                                    



 








    hearing her sing more beautifully than i could do will never grow old, nor will knowing how many talents she has, musical and otherwise. some i have passed along to her, as well as zebrahood, for which i can take equally no pride or blame. in every moment, i know she is on the planet, and that fulfills a desire that i thought was hopeless, to have any children of my own. 










 this is her best talent, mothering her daughter, Cadence. also, obviously, a miracle on this earth. not only is she here, that would be ample happiness for anyone, but she was blessed in her cradle too. bright and a beauty and a fierce drummer, she is ready to carry on the family mission of world domination through music.

 she loves snails...




 this is how i prefer to see my tree.

                                         "the moon has become a dancer at this festival of love"
                                                                         Rumi

cadencejubilate sent you a video: "Ave Verum Corpus K618 - Wolfgang Amadeus Mozart"

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cadencejubilate has shared a video with you on YouTube: the religious experience of "desire" Ave Verum Corpus K618 - Wolfgang Amadeus Mozart La Scuola Corale G. Puccini di Sassuolo accompagnata dall'Orchestra Filarmonica Emiliana, diretti dal Maestro Francesco Saguatti Registrato nel concerto del 4 novembre 2006 nella chiesa di San Giorgio - Sassuolo (Mo)
© 2012 YouTube, LLC 901 Cherry Ave, San Bruno, CA 94066

"every day is a new beginning"

Every day is a new beginning.

The secret of life isn't what happens to you, but what you do with what happens to you.

Help other people to cope with their problems and your own will be easier to cope with.

Never use the word impossible seriously again. Toss it into the verbal wastebasket.

Self-trust is the first secret of success. So believe in and trust yourself.

Stand up to your obstacles and do something about them. You will find that they haven't half the strength you think they have.

Joy increases as you give it, and diminishes as you try to keep it for yourself. In giving it, you will accumulate a deposit of joy greater than you ever believed possible.

How you think about a problem is more important than the problem itself - so always think positively.

''Keep your hands open, and all the sands of the desert
can pass through them. Close them,
and all you can feel is a bit of grit.''

Taisen Deshimaru

 Cadence at the beach with open hands.

"dumb paws"

   i am WORKING on staying positive and productive today, and on this day it is hard work. i have "severe peripheral neuropathy secondary to EDS" in all 4 limbs. i often refer to my hands as "dumb paws", because they don't follow directions nowadays. in fact, they've been deteriorating for at least 15 years, so it was gradual the way they stopped obeying orders. i love to write, but that's hard enough right now with half-a-left-hand. i can't do much, but i now appreciate what i HAVE been able to do with them. i love to create, and i am dead in the water due to the latest round of injuries. *  in my mind i am back at the zebra bar, trying to come to terms with today. lonely, sad, and feeling very helpless. i do not do "helpless" well at all.

       this brace is permanent. the reconstruction surgery eventually failed, due to a re-injury a year ago which has me trapped on our second floor, and this is a dumb paw. it has been since i broke & mangled it in 7th grade gym class, doing something that no zebra should be asked to do. that was my introduction to RSD.  meh, it's better than it was then, but not by much. i was doing "okay" with this. i've been meditating for 35 years, and as i'm allergic to all opiate pain meds, it's a good thing. i manage how i handle the pain of living at a level of 9, presently. i'd like to get down to about a 5. i could not only function but groove, then. i'm not looking for miracles any longer.




   this is my left "paw". a torn flexor tendon and pinched blood vessel in the dislocation of my wrist: caused by picking flowers about 3-4 weeks ago, outside in my powerchair, in our own yard.

   barely showing is the brace that i am wearing. i very fortunately avoided surgery on this one, just 2 weeks ago! incomplete rupture of the tendon. just baby it and let it heal. oh, yeah, that'll happen.









   this is my latest, my right "paw".  i thought i had a dislocated pointer finger that wouldn't go back right, so i went to the ER last sunday. caption: " # 327: you know you have EDS when: you wake up with a dislocated finger for no apparent reason. i want ring splints!! more attractive and comfortable than tape!!" (or what tape does to zebra skin).

    at least i can still hitch hike, but that's about it! (i have my towel and my guide). i had two broken fingers and a broken wrist!! NO idea how i did it!! i have had to scramble just to figure out how i would get to the bathroom. my powerchair is downstairs; the stairs i usually fall down when i'm trying to go from up here to down there, mostly for doctors' appointments. i've been trapped upstairs for a whole year. used my awesome Pilot walker to get around up here, but i fall ALL the time. now i'm scooting around backwards in my rolling walker with the seat, scraping my one "good" ankle as i learn to maneuver it, and trying not to tip out onto my face as i have no balance. rigging a lap belt is next!

                                                                                                                       
 

 

 "THE JOURNEY BETWEEN WHO YOU ONCE WERE, AND WHO YOU ARE NOW BECOMING, IS WHERE THE DANCE OF LIFE REALLY TAKES PLACE."