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Marionette Girl…

If this is my life, why are you dictating it’s script? Playing and toying with my emotions…and why in the blue hell am I allowing it?!?!?

Okay, well, not YOU, per se…but “You”. Sadly, this post will never be read by those to whom it applies.
It most assuredly applies to “You”.
Yesterday, in the throes of a rain day, making it feel like a P.D. school day (as in, all the children are at home)…I had time to think. Actually, I didn’t have time to think, but…rather…I used my ability to think to drown out the drama and whining and…well…you know.
This is what I thought:
[enter chime-like sound]
November. 2010. D-day (read: “diagnosis” day).

What would have happened to the people in my life if, say, I was told I’d won the lottery. Or that I’d become a famous rock-star overnight.
(it could happen…right? RIGHT??)
How would my friends and family perceive me then?
Now, you (not “You”) might ask, “Why? How do you think your family and friends perceive you now?”
I think (and by the act of me thinking I make it “mine” and thus “You” are in no position to invalidate it)…I think that people are choosing – whether consciously or not – to withdraw from my life. Ever so slightly…ever so discreet…but I see it. I can almost, at times, quantify it.
“Hey, I made the #lupus Daily!”
[enter, crickets, stage left]
But, “Hey, it’s been x days since I quit smoking!”…and 29 “likes” and 13 comments later…
[enter, fanfare and pompoms, stage right]
What makes the difference? I’ll tell you.
Simply put, I believe that the association between “me” and something that is distinctly only of my own being, qualities and values about “me” that others have grown to love (well, I’m assuming…I’m not that vain)…constitutes “acceptance”, and therefore is worthy of comment.
On the other hand, posts regarding a topic that people are either blissfully ignorant about (it happens…not everyone is going to feel the need to care about your conditions/afflictions/suck-asseries)…go, although perhaps read, relatively unnoticed. (It is, in fact, what prompted me to “cut the cord” and split my (as in, MY) facebook and lupus awareness pages.)
The problem?
The problem lies in the fact that those conditions/afflictions/suck-asseries have now (or since, depending on how long ago your diagnosis was…) become just as much a part of who we are…who *I* am. But “You” have chosen to disregard this extended personal aspect of “me”…your “friend”. Thus, and this is the kicker, folks!!!…
.”You” have also chosen to alienate and ostracize a critical part in how I relate to “You” and to how I manage my conditions/afflictions/suck-asseries…
It is oh-so-very-much easier to manage conditions/afflictions/suck-asseries when you don’t feel like someone you care about has just pushed you over the edge of the proverbial friendship cliff.
So, again, I ask “You”…what if I had become a famous rockstar? Would you be even MORE present and obvious in your friendship? Because let’s face it…have you known someone who has “made it” in something and you’re proud to say to other people that you know them personally??
I know I do. I’ve a few people in my life that I’ve met through actual, REAL, personal connections and I get my *SQUEEEE* factor on whenever I see them post on my wall, respond to a comment, etc.
What “You” fail to remember, however…is that, indeed, I might be “chronically ill”…but that I’m fucking kicking ASS all over my social media, will be launching a new blog format I believe is going to be FRABJOUS, I’d raised over $1,300 in 3 1/2 weeks for the Walk for Lupus and am STILL raising funds…and…well…you know what?
It’d be really cool if you came along for the ride.
But I see you. Over there. (hushed voice) “Omg, don’t let her see me, I can’t bear to hear about any more Lupus shit. Or fibro shit. Or diabetes shit.”
Ya, I’m a little busy, aren’t I? Yet, I am still working, still raising children and still generally trying to be badass.
I DO rock! If it suits “You” better, I could dump a bottle of glitter over my head and pretend I’m the freakin’ Tinkerbell-gone-wild. New reality show. Check it out.
And, if you look closely at your wall, or the responses to your tweets…unless you’re a spoonie yourself…have I ever made a comment as such? “Oh hey! Have a blast camping this weekend…I’ll be laying in bed miserable again with my compression gloves on checking my blood sugars after I take my medications.”
No. And what “You” also fail to realize is that the “I’ll be laying in bed miserable again…” part doesn’t happen. But “You” wouldn’t know that because you’re as clear as Windex.
I’m also calling “You” out for your offer of help (sorry…ASSISTANCE). I’ve said it not once, not twice, but now thrice…that I do continually require assistance. I’ve also, had you taken the time to read it, posted exactly and precisely (OCD at it’s best!) in what manner I require said assistance. If I find you worth the 2.2 minutes out of my life to check in on…I would verily appreciate the same in return.
I’m a human-freakin’-being with thoughts and emotions, just like “You”, trying to make the best of what I’ve got with what I’ve been given.
You know (not “You”…you!!) it’s funny. When I’d had gallbladder surgery a few years ago, my freezer was stocked with food to provide for my family while I was at my mother’s recovering.
Do you know why? I’ll tell you. I think because the majority of people (I’m not being a hypocrite…I’ve done it my damned self, which is why I can tell you) look at the extent to which help is required.
A week? A few weeks? ppppppffffffbbbbbbtttttttt No problem!!!
A lifetime? omgIcan’tdothatpleasedon’tletherlookatme!!!
Silly Puppeteer…”You” clearly aren’t reading my posts/blogs/media because if “You” did, “You” would know that I will have periods of remissions, too. That I do NOT, most assuredly, feel like my world is crumbling into ruins.
No, I was just thinking yesterday that as much as some people seem to be disappointed that I’ve suddenly (hmmm…what’s the word?) become oh-so-very-much less…that I’ve somehow lost my “muchness”…and that for whatever reason it’s oh-so-very-much easier to just pre-assume that this stuff is all I talk about…and, therefore, ignore the “me” altogether…
Well…I was just thinking to what extent that I am disappointed that “You” might never have ever been much “muchier” to begin with.
At the end of the day, dear Puppeteer, I still love scrapbooking, I still love steampunk, I still work, I still play, I still read, I still listen to music, I still dance, I still educate myself, I still play with my Copics (she’s such an awesome Marionette Girl, no?) and I still set goals to fucking kick ass and inspire.
Dear Puppeteer…what did “You do today?


  1. Janice

    I was a doormat when it came to the "yous". Was, I hope, and not am, cause I am trying to work on it. When I felt them slink away, sigh deeply, or let a "still?", "again?", "sorry (said without a drop of emotion)", I would backtrack. Yes, I know I just mentioned that I had to go to the doctor again and I am in so much pain, but I am also superfantasticsunshine me and you can just ignore what I said first, please tell me about your day. I didn't know how much I was "allowed" to talk about it, what I should expect from people and when was I asking too much. There's no guide book here folks. And yes, I have this for life so…. no I can't stop talking about it, not altogether. I over think my facebook status, my emails, I don't want to push people away but at the same time, "you" have kids or a wedding or house remodeling or job issues… and I listen to all that. I am not asking "you" to cure lupus, fix me, do everything for me, talk about nothing else with me. Its just part of my life, sometimes a lot more than other times. And I can't keep ignoring it like I have been. Its not working for me. We, "you" and me/lupus/fibro, are either going to find a way to be friends without me constantly working to protect you or we are gonna part ways.

  2. bastdanica

    I loved you before your diagnosis, and will continue to do so, no matter how much or how little *assisting* is tangibly obvious. As you said, it comes in many forms.

    Most people don't want to be responsible for someone else's kitchen, folding laundry (omg I have to touch your whatnots!) – because OMG I might have to come back! well… 1 day here and there, is better than zero.

    Sometimes it isn't just the thought that counts – its being present. Being THERE.

    I was going to wear my Lupus t-shirt when we met at the park, but decided you didn't need yet another reminder (*gasp* another one), and what are you wearing when I arrive? *grins* Though I realized I should have brought my hat from the car and thrown it on YOUR head. *badgirl*

    Assistance comes in many forms. I'll bring the massage oil to KG. Hopefully I can turn you to butter without making you worse.

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