Saturday, February 20, 2010

In Search of the New Normal

The new normal hangs above me like a sky threatening rain. If I accept this I ask, what am I accepting? I learned the extent of the damage done to my autonomic nervous system. I learned that I had Ehlers-Danlos Syndrome. I learned it, I believed it. I accept it in a way and in a way, I don't. With every hospitalization I learn more concretely that there's just nothing anyone can really do.

And I know this. But every time I get out of the hospital, I know it that much more.

"Do you know what Ehlers-Danlos is?" I ask the resident. "Yes," she says, but then wonders aloud why I have three pain medications. Then I hear her explain EDS to my nurse as a "connective tissue disease where they can stretch their joints and their skin..." As if it were some kind of joke or game. Perhaps that's why, after this hospitalization, their brilliant plan to put an end to my stomach problems was for me to stop taking my pain medicine.

I can't do that, so I'm back to square one.

At a fairly young age I'm experiencing the kind of infirmity that is usually reserved for people much older. My parents, nearing retirement age, can walk farther and faster than me. I can't run or climb stairs very well. And these things...probably won't change. Unless it's to get worse.

Let the record show that I suck at "getting over it" and hold grudges indefinitely. Which served me fine when the worst thing in my life was Starbucks being out of melon syrup, but this has served me less well when confronted with incurable (and by-and-large untreatable) illness(es).

Truthfully speaking, I'm living in the 'new normal' right now but just haven't processed it yet. I still haven't grasped that if I jump straight out of bed after waking up in the morning, I will pass out. I haven't grasped that if I decide to relive my glory days and go running, I will be in agony that same night. No wait, I take it back, I have grasped that. I just don't care.

I would love if EDS weren't so rare that there were flesh & blood support groups for it. Not to denigrate online ones, but it's online...medium is the message...not the same *cough* When my nutritionist mentioned that she'd just treated a girl with EDS a few weeks ago, I found myself wanting to know who she was.

Because I look young many of my friends are younger than me. Not by much, but enough that I'm sure they get tired of hearing my tales of woe. And to be honest, I feel sad seeing my friends living the life I used to live.

It's as if I fell off the back of a fast-moving train and am still lying in crumpled heap on the ground wondering what the hell happened.


D. Vaughan said...

Beautifully written and so completely barren and honest. I don't live with the same day in and day out pain you do, but loved someone very much who did. And now I love his son more than my own life. I am thankful to have found your blog and will look forward to reading more. Although, I wish you had no other EDS-related subjects to ponder. Writing has been a tremendous release for me as well - I think the humanity of our stories will eventually help bring the change we so desperately need. If only the doctors and nurses (like the ones you mention) would read these blogs!

On the subject of poetry, do you read Rilke? He's been a suprising and tremendous source of comfort to me; not in the sense of "making me forget" or "making it all better", but in acknowledging the closely intertwined relationship of love, life, and death. He just tells it like it is. It's desperately refreshing.

Yvette said...

Debbie, thank you so much. I've watched your video on YouTube and I've been keeping up with your blog. You say a lot of true things; the kinds of things you really have to have 'been there' to say.

And it's funny you mentioned Rilke, because he's my favorite poet of all time! Ever since I read the Edward Snow translation of The Book of Images.

His poetic voice is unpitying and relentless but never cruel. I especially love the first of the Duino Elegies.

It makes me want to do an all-poetry entry. I'd like to talk about something other than EDS-misery, ha.

Lucy said...

Beautiful post! And i lOVE Rilke!

I too "suck at getting over it" lol.

Yvette said...

Lucy, thanks! Rilke is best and sometimes I suppose, there is no getting over it. Just going through it.