the forgotten diva's voice: "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