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"Hey, I'm Flexible!"

Stories from an actress
with an Invisible Disability

Ehlers-Danos Syndrome - Hypermobility Type

www.EDNF.org

My HEDS vs. The Hard Folding Chair

8/28/2013

2 Comments

 
Picture
I am just sitting here. GLARING at this photo of a hard folding chair. I'm glaring so hard at it, you would think my butt was in it right this minute. No one I have ever met is a fan of these things - unless the alternative is standing, of course - but I actively hate them. I have no idea why they are so insanely hard on my body. And they are all over the frickin' place!

While I am in the process of filing for disability, I am treated as if I am someone trying to scam the government. This is protocol. There are limited funds available so, even tho my taxes have gone into paying for this all my working life, they make it as hard as possible to collect. This means you are often called in for appointments to fill out paperwork, pick up paperwork to force your doctors to fill out, and just generally prove that you need this so badly you are willing to be treated like a possible criminal to get it. I'm not happy about this. It embarrasses me. I already feel like a load on the people I care about. But I understand everyone has to do this. But why, why, WHY the insanely hard chairs??? If you are going to keep me in your offices waiting with a hundred people for 2-3 hours (yes, that's 2 to 3 HOURS - and I have waited for 5 hours before), why must the chairs hurt so much?

Now, the place that only deals with the disabled who are applying for services (FedCap), they have cushioned chairs. These still hurt me after about 30-45 minutes, but it's not the same kind of pain. I can shift around, bend over my knees, often pull up another chair to raise my feet - it's not great, but I can tolerate it. And they usually get to me within about an hour. But the Job Center where all we government leeches go - that place is nothing but hard chairs. And that is where we wait the longest. And that is where no one cares if you're just chronically out of work or if your body has rebelled against you in some way. If you want their continued assistance you damn well better wait.

And wait.

And wait...

In the hard chair...!

By the time I get seen, I'm usually in tears. It takes my body at least 2 days to recover from whatever that chair is doing to my spine and hips and shoulders.

But then it's over again for several more months.

I've read that, once people get their disability payments, even as small as they are they end up being enough that the other government assistance drops to about $30/month. And it's such a hassle for the disabled to get to the appointments and handle the paperwork that most stop trying collect it even tho they qualify for it. I sure as hell understand that. We'll see how long I can take it once I finally get seen and qualified.

In much happier news, I'm doing another ARGUMENT SESSION! Such fun - this one is about habeus and the Guantanamo prisoners and I'm playing Chief Justice Rehnquist. We had our first rehearsal at Ilana's apartment (they only last 3 hours and only happen a couple of times, so I tolerate the pain of the commute to get to do something this much fun!). Her apartment has cozy couches for me. But she excitedly announced that our next rehearsals will be in an actual rehearsal studio at CAP 21.

It was a real rehearsal studio all right! Guess what we sat in! 
(Hint: see picture above)

2 Comments
Student Arkansas link
2/13/2021 07:15:03 pm

Loved reading thhis thank you

Reply
Me
2/13/2021 08:13:09 pm

Thanks - I wrote it so long ago, I’m surprised you stumbled on it.

Reply



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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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