Twitter is powerful tool for spirituality and friendship.

By: Loolwa Khazzoom, Founder, Dancing with Pain

April 16th, 2011 • Patient AdvocacyPrint Print

If you have not yet joined the Twitter revolution, do it. I have met phenomenal people from all over the world who are living vibrant lives despite all kinds of chronic pain and chronic illness. And yet they also freely shares their trials and tribulations, well aware that one does not cancel out the other, but rather, that it’s all a part of living life raw and authentic.

Below is a thread I put together from a recent exchange between some of my “tweeples” – twitter people, or pals – and me. Sometimes comments are flying back and forth faster than we can answer each other, but I’ve put these as much in order of conversation thread as possible. For those of you who do not use twitter, “@name” denotes the person who is speaking. If there is no “@Name” symbol before a statement, it is me talking. In fact, I’ll italicize it, to make it clear what’s me and what’s others. So again, if it’s italicized, it’s me talking!

Wanna write the story of my life before pain, how pain changed everything, n what I’ve made of my life since the wrecking ball hit.

@lightchronic Only if I can interview you abt it :-)

mebbe that will help me start! xx

Feel afraid to write about my story because so many people judge and decide they know the spiritual or psychological reason for everything.

Feel like I lost a part of me b/c always surviving, moving forward, up, but, I don’t know, something got lost somewhere…

@iamLilythePink Those who judge don’t matter & those who matter don’t judge … xx

@Dancing_queen_M Dont let ignorant ppl get u down, u hear me! U continue doing ur thing, inspiring and helping others. U have our support! 

thank u darling! means a lot to me to get #spoonielove and encouragement. xx

@Penlady You’ll never please everyone, so just concentrate on those u WILL be helping. No one would ever speak if we catered to all.

sound advice. and true. Thx Ms. Pen! :-)

@iamLilythePink Get it out. Mentally choose just one person you’re addressing it to. Then Let it Flow … x

Isn’t it weird how life can be contradictory? in one way i’m totally out there. In another way i’ve been hiding.

This movie, “before sunset,” just really woke me up. plus i’ve been feeling it – feeling like, shit, i need to excavate!

@iamLilythePink I do understand. Have you ever listened to Deepak Chopra’s Garden of my Soul CD? …

@iamLilythePink Seek out Amelia Kinkade. You may connect. Be a powerful attraction or the polar opposite. You might wanna go see … x 

I have so many journals, songs, poems, photos, artwork…all so disorgnaized, scattered, missing, erased.

How do i find time 2 live, survive, b vibrantly alive in here & now but also to find n piece together my life’s creations?

@lightchronic Anything you feel you’ve lost is just in safe keeping for when you need it again. #spoonie spirit

Damn. u made me all teary eyed.

I don’t know, cuz it seems i forget the details, n the details R where the truth lies. i have always felt that.

When it gets fuzzy, i can’t access the subtle nuances n twists n turns n revealing raw truths. n then i feel like giving up

cuz then it’s like it’s not my life anymore, but rather, some faraway tale that someone told me. not something i can BITE INTO

Also afraid cuz I’m trying to make money/survive, n U have to present this polished image, but I AM RAW by nature.

So it’s like, again, contradiction of competing needs. Been defering to survival, cuz, like, I gotta have roof over head!

Thx to all the #spoonies who immediately gave me love n support n ideas when I talked about needing to express a hidden part of me. xxxx

@lightchronic *hugs* I think that feeling of loss is part of the process of adaption as our health gets worse. Certainly has been 4 me.

well i’m generlaly pain-free since dance, but keeping my body healthy takes ALL my time outside of work n sleep! so how do i access other parts o me? like artistic sensual part? i run around in sweats being comfie n athletic! no xtra energy or time!

@lightchronic I learned early on, if something is important you will remember it later. For me, always had short term memory probs.

@lightchronic Doesn’t dancing release your sensual/artistic side?

hahahaha! yes it does! thanks for pointing that out! i guess i mean when i go out in the world. among other thigns, i have to be CAREFUL. proactive. very attuned to my movements n those of other peopel, so i don’t get bumped into n end up in pain. it’s a drag, it’s like an inhibition. but i like talking about it publicly like this, cuz that opens posblty o transformation.

@lightchronic Maybe u should treat your daily outside life like a choreography exercise.

I. LOVE. THIS!!! xx

Will report back from the field! And I love field trips!

@lightchronic You have reminded me the simple pleasures of small movements to music. TY. I need to try slow dancing at some point. 

we R helping each other then. I LOVE that!!

“Your true colors R beautiful like the rainbow” (Cyndi Lauper) Show them so others show theirs in repsonse. Attract kindreds w/honesty.

@lightchronic As a radio person, I have recordings of me walking where you can hear my assymetry, quite painful listening tho.

audio. i have gone on walks while talking into audio recording. but ehn i f’ing lose them or can’t keep track or can’t afford to get transcribed or don’t have time to assemble. so i feel like i’ve been chronicling my life, but then, what’s the point, being stuck int eh past, organizing the life i lived previously. so i think the crux of the issue is that i choose waht is most importnat to me, but then hold myself accountable for not accomplishing the other stuff too. plus there’s just the sadnes or frustration of wanting to devote my time to sharing those experiences, or simply assembling them for my own self-knowledge n feeling constantly like I. CAN’T. KEEP. UP.

@GiftedHand we share ups/downs excitement & sorrow so that others feel safe to also, makes us real/human & not roboton. Your beauty is your encouragement you give others through your own adversity.What we do/have being a compassion & understanding of human condition that we wouldn’t have may be otherwise. Xxx



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