While working on my PANDAS Sucks Facebook page a few weeks ago, I ran across this quote, and it really hit me. You might say that it kicked my ass.
“If you’re afraid to defend your convictions because you might get your ass kicked for it, you’re not really fit to advocate for them.” ~ James Carlos Blake
Whoa. I need be willing to get my ass kicked for all of this?
That quote explains why I think a lot of us unconsciously hold back our opinions and convictions on certain topics. Do I REALLY wanna go out on a limb for such-and-such a cause? What will people think? What will people say? How will everyone react? How much am I willing to risk? Do I know enough on this topic to defend my position or am I going to be bested and look stupid?
For me, I think it goes to how I tend to be be all in or all out of something. There’s a lot of intimacy and vulnerability at stake when you put yourself OUT THERE for something too. How much of myself am I willing to reveal, explain, and sacrifice? (This coming from a chick that has used this “PANDAS” blog to talk about her boobs, her full body scan, and when she gave birth…oh, what adventure will be next? LOL!) And when you’re helping others, you can end up absorbing a lot of their pain on top of your own. I have sat sobbing at my computer reading all the misery in the PANDAS support groups. (This song explains it well…but sometimes you also need someone to talk to about everything when you’re troubled.)
I honestly don’t usually consider myself an advocate for PANDAS. I have A LOT of opinions about PANDAS (ha ha). I tell stories about PANDAS to whomever I can get to listen. I post PANDAS links and stories and resources on my personal Facebook account. I write this blog and maintain a Facebook page and a Twitter feed and Pinterest boards. I head up a PANDAS/PANS Support Group in Kentucky (and have plans to soon build a little web site to help Parents, Physicians/Providers, and Educators in our state). I have helped organize and attended PANDAS Parents meetings. I’ve presented at major PANDAS Parents conferences. I have been an administrator for PANDAS Parents Facebook groups and still participate in several support groups. I have educated teachers about PANDAS/PANS. Let’s just say that I’ve told my PANDAS stories to a lot of people…whether they wanted to hear it or not. 😉
That’s a long list, but still…rarely would I use the word “advocate” to refer to myself. It probably does SEEM like I’m doing a lot of stuff (and there is so much more I should be doing)…but is it advocacy? Here’s the Dictionary.com definition:
Advocate: [v. ad-vuh-keyt; n. ad-vuh-kit, -keyt]
verb (used with object), ad·vo·cat·ed, ad·vo·cat·ing.1. to speak or write in favor of; support or urge by argument; recommend publicly: He advocated higher salaries for teachers.noun 2. a person who speaks or writes in support or defense of a person, cause, etc. (usually followed by of ): an advocate of [PANDAS]. 3. a person who pleads for or in behalf of another; intercessor. 4. a person who pleads the cause of another in a court of law.Here are the non-lawyer synonyms listed: champion, proponent, backer.
So…I guess I AM an advocate based on definitions #1, #2, and #3. Though there are times it really seems that I’m doing some #4-like defense work when explaining how brain inflammation (a swollen brain!) can cause some Bizarre–Ridiculous–Aberrant–Twisted behaviors, and he is NOT a BRAT.
My dear friend Wendy at PANDAS, PITANDS, PANS Advocacy & Support says EVERYONE dealing with PANDAS is an advocate. Every time you talk about PANDAS you are advocating and educating someone. Get a phone call from the school?–you advocate. Talk to a peon at Walgreen’s pharmacy?–you advocate. Riding in a car talking to a chatty Uber driver?–you advocate. As a PANDAS Parent you are advocating without realizing that you are advocating anytime you explain anything about the condition. 🙂 (Wendy did an awesome job talking about Advocacy at the West Coast PANDAS/PANS Symposium back in April!)
Maybe I just don’t want to be considered all sorts of CrAzY. but PANDAS probably HAS made me a little CrAzY. I know too much now–yeah. The way I have changed my mind about so much while on this PANDAS journey is mind-boggling. It has caused me to rethink so many things that I once thought were sacrosanct. Plus, I really don’t care much what people think about me anymore…barely ever did…so let them think I am CrAzY. And if you wanna kick my ass over what I say about PANDAS and all of it’s periphery, then I have three words for you: BRING IT ON!
You wanna piece of me? Come on…I dare ya.
Maybe some of it is that I didn’t expect to be an advocate for anything. I never saw any of this stuff happening. I am not a Norma Rae, and plenty of people DON’T like me. But my first instinct at seeing injustice is to fight it. (Well, first I’mma gonna bitch about and then try to figure out what I can do about it.) When I feel like something is outta whack, then I wanna whack it back where it should be. When I feel passionate about something, I get all revved up. When I get bad news, it might knock me down , but I get up again (like Ali in the Jungle). All that stuff likely combines to make me a good candidate to be an advocate. Dammit.
So, I guess I AM a PANDAS/PANS Advocate willing to get my ass kicked for defending my convictions. How about you…are you a PANDAS/PANS Advocate too? Maybe we should just go kick some PANDAS ass instead. 😉 We can start by planning our actions for PANDAS/PANS Awareness Day on October 9, 2014 (click here).
Wishing you a kickass day today and every day!
P.S. The Advocate Messenger is the name of a newspaper in Danville, KY. It was created when two papers merged back in 1940, and it used to be one of my accounts when I was in pager sales a long time ago. As I started to write about advocacy, this newspaper name popped into my head. I have always thought it was an odd name for a paper, but maybe it’s not since the pen is mightier than the sword…well, we use keyboards now. 🙂
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Sarah is a PANDAS Mom to her awesome son, Jesse. She spends much of her time on Facebook, making to-do lists, and listening to music, especially Depeche Mode. She drinks a lot of coffee, likes a good red wine, and has been known to hide chocolate in her pantry. Sarah really thinks PANDAS Sucks (the autoimmune disorder, NOT the bears!). PANDAS Sucks exists to tell the collective story about PANDAS/PANS. Sarah wants to empower other PANDAS Parents and let them know they’re not alone. See also Facebook, Twitter, and Pinterest.
Note: Please do not ask for doctor referrals or specific medical advice. This blog/web site is for info and support purposes only. I’m not a doctor.