I don't like stairs.

Now, I know many, many people are not big fans of stairs - especially when carrying things like groceries or baby strollers. But I see stairs and I just groan - I always have.

There is a very entertaining thread on the EDS Message Boards called "For FUN! "You might have EDS if..." We all like threads where we can have a sense of humor about this thing we all share different versions of. One of the ones I added was "You might have EDS if you fall UPstairs as well as down!"

I've always done that - all through school, tripping and falling up and down stairs. And my mom says that when I was around 3, the neighbor whose house I'd been playing at told her I fell straight down their stairs like they weren't even there - I just kinda dropped (she apparently found it amusing. I never really liked her a whole lot -  guess it must've been mutual!). I've been told that when I fall, it doesn't look like a normal human falling - I look like a marionette whose strings have been suddenly cut. Picture it. <floop!> Must be odd to see.

SO I don't like climbing stairs a) because I have exercise intolerance (that sounds like a high school gym class joke excuse, but it's an actual real medical thing - still, I wish I'd known that phrase in Junior High!) and b) my left knee has an unrepaired torn mensicus - my right knee has had multiple surgeries, but it's holding up better than the left. But, as I've said, lots of people hate going up stairs.

But unlike most people, going DOWNstairs is worse for me, because of the mentioned-in-a-previous-post lack of proprioception - I don't know where my joints are in space. And, even braced, they're weak. And my bones move. And people don't have ANY way of knowing this as they push past me and I vividly picture falling forward and kissing the cold, disgusting subway steps. It just scares the crap outta me (and not just cos "ew! subway steps!", but that's almost enough.)

NYC is a city FULL of stairs.

Subway stairs, jerry-rigged and seldom-repaired backstage stairs, old steep stairs with rickety handrails in ancient buildings (especially scary to climb down after I'm shaky from my Pilates class), stairs up to stores, stairs down to offices. My apartment building has an elevator, but you have to go up a flight of "stoop" stairs before you can get to it! Only some of the subway stops have elevators or escalators and they are frequently being repaired - there's nothing quite like the thrill of getting off your train and seeing the boarded up and padlocked "Excuse Our Mess While We Improve Your MTA Service For You" signage that you know is hiding a dead escalator. (I was told they die frequently because people - and by that I mean almost exclusively male people - pee on them. STOP doing that!)

I've been asked to participate in the next "Argument Sessions" - it's a one-night presentation of a theatre workshop using actual Supreme Court transcripts and I loved doing the first one! It's one of those projects that requires a few short bursts of rehearsal and then we do it, and my body can mostly handle that. But the place it's done is by a subway stop with a broken escalator. The last time I did it, that stop AND the connecting stop I needed BOTH had broken escalators. I had pain all over the next day. I felt it was worth it.

I mean, I can't not do some creative work - stopping everything you love because you've become disabled leads to depression pretty damn quick. And this is an insanely interesting project  - I have some damn talented friends and Ilana Becker, who created this, is one of the most fun to work with! 
But I also know that the stairs are coming. 

The stairs are coming. 

The stairs are coming...


 

This is all new to me, so I look for insight wherever I can find it. I'm a reader, so of course, I head for books! Wonderful, wonderful books!

When I look to books for inspiration in living my life with this new awareness of what my body can and cannot do, I find titles like these:
Being Sick Well: Joyful Living Despite Chronic Illness
Being Well (Even When You're Sick)
Doing Well at Being Sick: Living with Chronic and Acute Illness
How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers

There is nothing wrong with the content of these books - most are helpful. But I have trouble with the word "sick".

People with chronic pain/fatigue syndromes often use the words "sick" or "ill". But the word "sick" bothers me. I don't feel sick. I have a genetic collagen defect - the "glue" that is supposed to hold my body together is less Super Glue and more that paste glue you ate in 1st grade (you did, didn't you??). Because my bones often subluxate ("sublux" is when they shift out of joint but shift right back in again, unlike a dislocation where they are really out and stay there a while - only my knee and some little bones in my feet have dislocated, as far as I know), and because I have muscles desperately trying to do what my joints, tendons and ligaments cannot do, I have chronic pain + fatigue. Sometimes I don't even notice it's there because it's there all the time - until I get a pain burst: from a pull, or a microtear from a sublux, or fall because my coordination is a less-than-stellar (that's called "lack of proprioception" - our joints are loose so we're not sure where they are in space). That's not "sick" to me. That is "disabled".

"Sick" is when I get the flu. "Sick" goes away. "Disabled" means my abilities have changed - they have become more limited. "Disabled" does not go away. Saying I am "disabled" doesn't bother me. Saying I'm "sick" or "ill" does. It just doesn't feel right.

I love words and their usage, and these words bother me in this context. I don't really know why this is. Maybe I haven't been living it long enough to know yet. Or maybe I'm just cranky ;)

Don't worry, though - I'm not gonna get upset or or judgie if you use those words. (However, I will still judge you on "their", "they're", and "there"!)

Having an agent in NYC is a big deal. It's hard to get one, hard to keep one, and hard to work much without one. Even tho I haven't really been able to work, I am loathe to give up having an agent. With my agent, I don't have to put my contact info out there - his phone number becomes my phone number. It provides both a feeling of safety and accomplishment. 

But an agent can only represent you if they know what is going on with you. And this isn't something I can hide anymore. I don't get many people asking to see me anymore - my popularity rush after Adding Machine lasted about 2 years, then it was over - but I do still get requests to audition for things every now and then. Most are readings or workshops, which I LOVE to do. Last year I had a request to audition for the role of the Grande Damme in the Halloween production of SLEEP NO MORE - it KILLED me to turn that one down, but I saw the hours and knew I couldn't physically handle it...

I really should have informed my agent about my condition before I released the blog. But I saw that the blog was turning up in searches even with the link on my website hidden, so I knew I needed to acknowledge it. And that has forced me to send an email to my agent. And god, was that hard. I'm actually nauseated from the anxiety.

I don't expect them to market me anymore - I just hope they'll keep me listed as a client so people can reach me. But it is absolutely understandable if they don't. Agents are about business - they have to be. We'll see what they feel they can do about me.

UPDATE! August 14, 2013
I got this in my email today: 
"Cyrilla, my apologies, I did read this back in May but neglected to respond to you. Of course I will still represent you in any way possible. I hope you're doing okay and please, stay in touch and let me know what's going on. xxoo,Gary."
I'm a lucky - and grateful - girl.

This is amazing news. I've been having to comb websites and medical journals and books that are written for medical professionals - we all have to try to find and understand them, as this is the only way to get information on our condition and any possible treatment. We have to educate our own doctors. My rheumatologist is a wonderful man, but he has an office full of people with arthritis and I am only the 3rd EDS patient in the history of the office. This means he has to focus on staying on top of research that affects the vast majority of his patients and he relies on me to bring him research that I find on how to treat my condition. I'm one of the very lucky ones - many people have doctors who won't listen to them, say they don't have EDS, that it's all in their heads, or - get this - REFUSE TO DIAGNOSE THEM BECAUSE THERE ARE NO TREATMENTS FOR THE SYNDROME! Now, what kind of crap is that???

So this is amazing news. Even if I never go there for treatment (once it's officially open, which will take a while), I'll have a kind of central clearing house for information on the damned thing. It'll eventually save me a lot of Googling and may help cut down on the amount of experimentation I have to do with treatment options.

This comes the morning after another sleepless night. I love going to Pilates, because my friend/teacher is amazing and I feel like I'm improving my condition, but I often suffer for it for the next 24 hours (sometimes I'm FINE and I'm a very happy camper!) No pain last night, but a seized muscle in my hip kept me from sleeping and all night I was combining stretching/heating pad/massage stick til I collapsed from exhaustion as the morning sun was coming up. So knowing there are medical professionals in a centralized location who are going to be focused specifically on EDS has been great news to wake up to.

But this isn't one of them.

Apparently, one of my ribs shifted in my sleep last night. This has become a fairly common occurrence, but some occurrences hurt more than others. This one must have really pulled when it subluxated. Unfortunately, on top of this pain, I had physical therapy today.

The EDS Message Boards are full of people complaining about their physical therapists - I am no different. Mine is a tiny young woman, named Kruti. I've spoken to another woman who takes PT at the same facility - she came to speak to me after hearing me moaning while Kruti was working on me one day. She said they assigned her to Kruti when she first came there, she had one session and immediately switched PTs. Unfortunately, few of the PTs that I have access to have any knowledge of hypermobility or do myofascial trigger therapy and I have to have that. But, even tho I have provided her with the PT protocol for EDS, she refuses to follow it. She doesn't assess my gait or balance at all, insists on trying exercises with ankle weights (contraindicated for EDS - I try each one ONCE, she hurts me, I never do it again). It's all painful, but Kruti makes it moreso. Today, I cried through the myofascial work - it doesn't happen often, but sometimes I just can't take it. On top of the rib pain, even Kruti knew there would be no exercises today.

People with the hypermobility type of EDS develop very high pain thresholds - I had an orthopedist tell me in the late 80's that my pain threshold was way too high and I tended not to see a doctor until I had already done serious damage. People with EDS are often disbelieved when we tell doctors something is wrong because we're "not in enough pain". The pain of a body desperately trying to hold itself together when its connective tissue "glue" doesn't work - which creates seized muscles and spasms - along with the "microtears and microtrauma" to our tissues that can only be seen with expensive high-def MRI equipment, causes our brains to shut down our pain centers because it's just frickin' constant. When something major happens, we notice the pain, but don't react as strongly as "normal" people because our bodies are already constantly flooded with pain chemicals. We look normal. We sound normal. We make jokes about our pain. We don't want to be a bother.

Today is a high pain day. Tomorrow will probably be better.

So, no more hiding in the medical closet - today I am making the blog go visible. I am disabled. It was actually official over a year ago when I finally got diagnosed, but I just couldn't accept it completely then (although is was a HUGE relief to finally find out what was wrong, but more on that in later posts). Some people who are close to me know the whole story, and I've dropped enough hints all over Facebook, but I just couldn't make the big step. So I just did.

This has been a long and weird journey, and I'm guessing it will get longer and weirder.

It was suggested to me by a casting director friend that I not let people know about this. That if it got out, I'd be considered an insurance risk even for parts that I could physically do. But that list now has so many "riders" on it, that I decided I might as well "come out" about it and see if I can spread awareness of a little-acknowledged medical condition - it's so little-acknowledged that even those who manage to get a diagnosis still have to fight against prejudice for treatment. We're called "malingerers" and "drug-seekers" and "hypochondriacs" and sent to psychiatrists because it's "all in your head", because the condition is rare and doesn't show obviously (though any of you who have seen my trick with my elbows would probably say that it looks pretty damn obvious to you!)

So I'm a "medical zebra" - have been since birth, as Ehlers-Danlos is genetic, and getting my diagnosis has put together puzzle pieces for me when I didn't even know I was a puzzle!

I'll probably skip all over the place in this blog. I'll describe what I'm finding out about the syndrome as a whole, as well as the version that affects me. I'll talk about my past and the clues I ignored - because I didn't know they meant anything! I've been lucky with my doctors, but there are many terrible tales of bad medicine on the Ehlers-Danlos Support Message Boards, and I may share some of those. I'll talk about how our medical community - and most others around the world - aren't set up to handle, or even recognize, chronic illness or chronic pain. And I'll talk about my frustrating journey through the "social safety net" and the people I've watched fall in the cracks in the government offices that are supposed to help.

Mostly, I guess I'll just be one more voice trying to raise awareness of a painful genetic connective tissue disorder that I didn't even know existed until a year ago.

Thanks for listening,
- Cy