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"Hey, I'm Flexible!"

Stories from an actress
with an Invisible Disability

Ehlers-Danos Syndrome - Hypermobility Type

www.EDNF.org

Of Cabbies and Goats' Feet

6/17/2013

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So, I got to do another ARGUMENT SESSIONS workshop. This is the interactive idea by my dear friend, Ilana Becker, involving using the actual transcripts from Supreme Court hearings in a casual setting. One of our cast members, Maggie, described rehearsing it as "like being in a really nerdy book club". I agree and I love it.

So preparing a workshop requires rehearsals. And rehearsals require commuting. Which is pretty rough on me (see "Stairs. Oy" 5/18/2013), but which is totally worth it for this wonderful experience. So when it turned out that another cast member, Joel, had an audition early the next morning and was taking a cab home that night and he offered to share it - and it turned out he lives 3 blocks from me - I jumped at it!

Joel and I don't really know each other and we made small talk in the cab about how our days had been long - he had done a workout and I had a Pilates session. For some reason - maybe because I've chosen to stop hiding in general - I told him about having EDS. It turns out he had a friend with Marfan's, so he understood! How wonderful to be understood!! Then, a strange thing happened: our cabbie turned around and chimed in.

Now, I've talked to cab drivers many times. Sometimes it's just pleasantries, sometimes it comes out that I'm in the theatre and they've written a screenplay, sometimes they are flirtatious. But I've never had one insert himself into a conversation about such personal matters before, as if we had asked his opinion:
"You know why people here have health issues? If I go to a doctor and you go to the same doctor and I get better and you don't, is that the doctor's fault? No! People here don't know about God's Will."

I swallowed hard. I worry about strangers bringing up God's Will. Some people who bring up God's Will can be very scary people - I am related to one of them. He went on:
"My wife had problems in her joint. The doctors wanted surgery. I said 'No!' Instead, I boiled goats' feet and made her drink the liquid. She got better. No surgery!"

Now, already we have a disconnect - if it's "God's Will", are you supposed to treat it at all? Or are boiled goats' feet some kind of exception to the rule? I was mulling over something innocuous to say, when Joel came to my defense! He said he totally believed that goats' feet had helped this man's wife - after all, that's where gelatin comes from and it's a building block - "But", he said gently, "my friend here has something a bit more complicated and extreme than an injury in a joint. She has a genetic problem with the way her body creates collagen, and that affects all the connective tissue in her body, so it's a bit different."

Joel's statement seemed to give me the nerve to speak. I told how it affects all my joints, digestion, heart, everything. Our driver expressed surprise and wonder at such a thing, said it must be tough on me. From there, the conversation turned to him advising us on not eating processed foods, where to buy non-nutrient-depleted produce, and how to cure a festering fingernail by wrapping onions around them (which he had done twice. TWICE!)

I thanked Joel as I left the cab (and asked him if he tipped extra for all the medical advice). I wasn't going to stand up for myself at all. But he did it, and in a kind manner that didn't offend our driver. He said that if I have been wrestling with this condition for a while, I probably knew pretty much all there was to know about treating it, and he figured that I really didn't need a lecture from someone who didn't know me or the condition. What started off as me feeling blamed (as we often do!!) for not being "well", turned into sympathetic ears from both gentlemen. And I ended my evening feeling understood - that's rare and wonderful.

So don't eat processed foods, buy fresh fruits and vegetables from our driver's friend on Coney Island (imported fresh from Lebanon weekly), wrap your infected fingers in onion, and if your joints hurt, consider boiling some goats' feet. Let whoever your particular god is figure out his "will" on his own time. You and I will just keep plugging along. And, sometimes, we'll even feel understood.



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    Author: 
    Cyrilla Baer

    I was diagnosed in February of 2012 with 
    EDS - HT (now called hEDS), which is a genetic connective tissue disorder (it's why I can bend my elbows backwards!) I've kept it under wraps, but I'm out of the medical closet now.

    EDS is caused by the body's inability to make collagen correctly. Collagen is in all connective tissue and connective tissue is part of every organ and vessel in your body. While your tendons and ligaments are like rubber bands, mine are more like taffy.

    For more info, please see my post "30 Things You May Not Know About My Invisible Illness", or visit EDNF.org or CEDSA.org. And tho it's a little dated (we try not to call it Joint Hypermobility Syndrome anymore), this is a description by a doctor putting it in  layman's terms.

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