Pardon Me

published summer 2012

[[[Title of blog refers to "Pardon Me" by Incubus - excellent soundtrack for this post.]]]

why is it that we always need to explain ourselves? when the people we love and care about - the ones who we spend the majority of our time with - say they understand, why do we still end up explaining what we've done and how we've acted? why do we have to justify who we've become? why can't the person we are now stand as proof of our sincerity to our loved ones - and why can't we be loved for ourselves?

example: i have less interest in going to a local bar and getting wasted, because i could do that at home with friends and not have to deal with the downsides (getting bumped into, crappy music, snotty bartenders, playing the "hi! how are you? game with people i could care less about seeing). clubs interest me more, but since the point of a club is to dance, the music becomes oppressive. to avoid the pain vibrations, bass, and gyrating people (who understandably are not worrying about spatial limits) i end up sitting outside enjoying my american spirits. when you're out with the crew for important events - such as birthdays, weddings, or bachelorettes - such disappearing acts are strongly frowned upon.

i wonder what the correct choice is to this quandry, however. should i sacrifice progress and my health & comfort to dance like the whirling dervish of my past? i know it would make you more comfortable. you wouldn't have to wander outside and say "where have you been?" or send someone outside to get me because it's "important all my girls are here."

but there's a reason that on a previous post i answered the question "if you had one day only without your illness, what would you do?" and i answered that i'd go out dancing - because in my new life, dancing is painful. it hurts like a motherfucker. if i rest my arm on you, you're still moving around enough that it hurts. plus, i have to put my arms UP, and that flexion is painful. even if i'm dancing by myself, besides the getting-bumped issue, dancing requires movement. this is a little known fact, but when dancing, if one wants to look good, one must move. if a summer breeze makes all the hairs stand up on my arm in a hellish tapdance performed by scorpions, what do you think dancing does to me?

if i'm sitting on the curb having a smoke and making a call, it's because i can rest my arm on my leg, which i can count on to be stable - unlike our party bus or limo, which comes with vibrations and a dozen drunk-ass divas. if i'm sitting in a deserted corner of an otherwise jam-packed bar all by myself with my shoes off drinking a water, it's because when my shoes are off and my feet aren't on the floor - not to mention my body is on a cushion - the vibrations aren't channeling my arm to act as though it's receiving snakebites from wily elementary school boys.

if you don't log the appropriate hours with a chronic pain patient, you forget that everything is affected. every single fucking experience. every single fucking hour, minute, second is a constant negotiation. while you're blathering on about your feelings, i'm negotiating with my brain, trying to make a deal with it that will allow me to sit in this spot for the next thirty minutes without ripping my eyebrows out. during our conversation i might wince - suddenly draw my eyebrows together - jiggle my leg - open my eyes wide - gasp... but that's the deal i've struck with my brain in order to be there with you.

and i'm throwing away spoons right and left to be there with you in that moment.

it's galling as hell when you attribute my actions to the old me. i'm not scrunching my eyebrows [giving you a nasty look] because i think what you said is the stupidest fucking thing i've ever heard. my goddam arm hurts. i'm not sitting [pouting] on a dirty curb getting my brand new dress dirty and scuffing my boots because you changed your mind. i need some motherfucking peace and quiet because loud noises are painful. i'm not hiding in the bathroom because i'm pissed off at you. i'm hiding in here because i needed to crumple up into a used tissue for a few minutes before i put on my lip gloss with a hand that's shaking like an alcoholic in withdrawl so that i can drag my ass back to hang out with you at this fucking godforsaken piece of shit loud-ass bass thumping drunk rednecks bumping and bitchy skanks humping hellhole. and i'm doing it for you.

but afterwards you'll remember the shots i didn't take, the dances i didn't groove to, the jokes i didn't laugh at, the minutes i spent with a straight face instead of a smiling one because i had two choices: either a) straight or b) snarling (sorry sweetheart, but your option c) of smiling went out the window the second time that big fat fuck knocked into me).

i'll remember that despite how much i detest this environment now, i stayed the whole damn night. i'll remember how much i liked the first place, because it wasn't crowded (you called it lame) and the music was at a tolerable level. i'll remember taking pictures of everyone and everything because i wanted you to remember this, and i knew you'd be too drunk to remember it without my pictures. plus, getting good pics with my shaking hand is like a game now. 1 out of 3 is a damn good record, you know.

i'll remember that after i made it the whole night without vomiting even though a) i'm in fuckloads of pain or b) my meds don't agree with my drink, and automatically try to expel it straight back out... and if they don't win in the first 20 minutes they play dirty.

i'll remember that i did this for you, because it's not all about me. i'll remember that you had a shitty month or have a shitty boyfriend, and this was what you wanted. i'll remember the time you tried to tell me not to tell that bitch off, and i didn't listen, and you picked up the pieces anyway without telling me "i told you so." i'll remember that i made you as many extra party favors as i could, and got you a gift way out of my price range, because i knew i'd have to be absent for some of the fun in order to make it through the night. i'll remember all of that, and even when i don't go to sleep that night in the hotel room i booked because i'm in too much pain to sleep, i'll be glad i did it.



so tell me - why do i need to explain all of that to you?

haven't i tried to do that enough in the last two years? have i not written a blog, posted facts/articles/videos on facebook to make educating yourself easy, talked to you about what it's like to be me nowadays - have i not laid the groundwork so that you don't attribute my actions to the old me?

yes, i used to lose my temper damn easily and then hold a grudge for all eternity, even over something ridiculous. yes, i used to be a complete drama queen because if there wasn't a *spark* in the moment, the moment bored me. yes, i used to be incapable of admitting i was wrong. yes, i used to present an angry face to the world, and say sarcastic shit so i wouldn't have to disclose how i really felt about anything.

RSD was a dealbreaker for all of that. i can't lose my temper whenever i have an inclination to, because the attached emotional response is linked to my nervous system, and when my nervous system flares so does my pain and all my other lovely RSD symptoms. i can't waste precious spoons on holding a grudge for all eternity, because i have to drive an hour there and then back/clean for 5 straight hours at work/carry the groceries into the house/push a cart (which vibrates as it rolls - and coincidentally, when one pushes a cart, one holds onto it with her hands to do so) that's loaded down with 25 lbs. of cat litter. i don't have enough spoons to bother holding a bouquet of them in my left hand just so i can be pissy with you for some bullshit excuse.

i take pleasure in things that are mundane - because as dave maraniss said - a man who i quote on my blog sidebar, no less - "Life is mundane until it is not, and then the mundane can seem serene." i adore serenity. have you any idea how hard it is to find peace when you literally are not able to relax physically? i've become much more introspective. i'm much more likely to sit at a table full of friends listening as opposed to taking charge of the conversation.

i was wrong about a lot of things when i was first diagnosed. i handled it all wrong - ignoring it emotionally, delving into denial like an ostrich with her head in the sand. i thought i understand the mechanics of what i had until i did the research and found out i knew absolutely nothing, and what i thought i'd known was so backasswards it didn't apply in the least. and not only that - but once i did learn to handle my diagnosis, i found out that my life wasn't ruined.

contrary to the nights i spent whining, sobbing, listening to sad music, staring at a bleak landscape that i thought made up my forever&ever, i realized that i was a happier person post-diagnosis. that facing the challenges, standing up for myself, learning what made me truly happy, not being afraid to re-examine my life and my relationships - i wouldn't have done those things had i not gotten sick. i had to admit i was wrong about the most fundamental part of developing RSD - that my life wasn't ruined, and that i didn't deserve heaps of sympathy. plus, once i discovered that wearing a sarcastic face and saying shitty things i didn't mean actually eroded my self confidence, i stripped the mask down - i became myself in public. granted, i still have a sense of humor. but i'm honest about the things that count.


i don't have to explain it to you. i already tried.

and i like my[different]self. my life isn't easy. it isn't what i thought it would be at age 25. but when i think of the little girl [Paradise - Coldplay] who sat underneath her windowsill in the summer to catch the last vestiges of light with which to escape to paradise... getting sick gave me the essence of that little girl back. a little girl who forgave, who loved, who trusted, who dreamed, who knew what she was worth and believed in it. and because i got a second chance, i know again what i'm worth: people who would rather dance with me to silent, painless songs rather than music that crawls into my arm and infects it with blistering heat. i'm worth people who want me to evolve, and give me room to do so - enough room so that i spin right up to the sky, twirling around endlessly until i meet the sun and the moon. people who not only accept me for who i am, but also who love me because of it.