“Our job is not to deny the story, but to defy the ending—to rise strong, recognize our story, and rumble with the truth until we get to a place where we think, Yes. This is what happened. This is my truth. And I will choose how this story ends.” ~Brené Brown
PANDAS/PANS can suck you dry. Remember, this is YOUR story. YOU get to decide how it goes. You don’t have to deny that PANDAS Sucks and the reality of what is happening to your child and to you. Even though it may make others feel better when you say you’re doing “fine,” you never have to make somebody else feel better when you feel bad. You are not ever required to do that! You don’t have to deny your story.
And this story of yours, you get to defy the ending because you are living it. You know there is only ONE acceptable ending: that your PANDAS/PANS child is RECOVERED. Yes, there are a million variables out of your control. Yes, you may have to fight many battles to get there. Yes, it may be years until you get to tell the happy ending of your story.But you still get to own the truth of your story. It’s your story to tell, and nobody can take it from you. And YOU choose how this story ends. YOU! And honestly, f$%k the doctors who try to tell you otherwise.
This idea of “telling your story” was really part of the reason I started the PANDAS Sucks Blog in the first place almost 3 years ago. It’s why in the ABOUT section of this blog it says, “PANDAS Sucks exists to tell our collective story about PANDAS/PANS.” It’s been there from the very beginning on October 9, 2013, and it will be there as long as I operate PANDAS Sucks.
FYI, I got flack early on for the blog name, PANDAS Sucks. People thought it was negative. (Even Dr Swedo told me once that she doesn’t like the word “Sucks.” LOL!) But wouldn’t the name “PANDAS Sucks” pigeonhole me and paint me into a corner? And my reply was “I have a plan.” But shouldn’t I be giving others hope? To this I said, “Yes…there’s hope. But a lot of it really sucks too, & I won’t deny that. We’re not required to do that.” It’s not my job to tell people how to feel. Only you know what you feel. And nobody can tell me how to feel. (Nor tell me what the heck to put in MY blog. LOL!)
But going back to “Your Story” and my “Plan”. I subscribe to another provocative thought:
“We cannot selectively numb emotions, when we numb the painful emotions, we also numb the positive emotions.” ~Brené Brown
This means that when you try to escape all of the bad stuff that’s happening and try not to think about it, you will inadvertently lose all of the good stuff too. You may be “comfortably numb” so to speak, but you will be uncomfortably devoid of any joy. Or in simpler terms…
“Numb the dark, and you numb the light.” ~Brené Brown
Speaking of “the dark”…(and I promise I am getting to the NEW PANDAS SUCKS SERIES…pinky swear!). I recently launched a “meme” version of the “PANDAS Sucks Because…”/PSB series. You can find all of the pictures on the PANDAS Sucks Facebook Page in the “PANDAS Sucks Because….” folder. Or find them on Pinterest or Instagram. I tweeted them too. The pics are shareable with a click and can help non-PANDAS folks to get the gist of the kind of crap we go through on a daily basis in a kind of sound bite basis. They are sort of like Public Service Announcements (PSAs) for PANDAS/PANS. Most of them are pretty painful…dark. I will be doing more of the PSB PSA memes soon.
After I had posted the PSB PSA memes for several days in a row, I received a message from a fellow PANDAS Mom and friend whom I adore:
I have been contemplating that note. I finally figured out what to do. Drum roll, please. 🙂
ANNOUNCING the launch of PANDAS Silver Linings.
What is a PANDAS Silver Lining or PSL? Well, it’s whatever little bit of joy that we can wring out of what my PANDAS son would call our “Dark Days.” This is us NOT numbing the Light because we can face the Dark. See how I came back to that Brené Brown quote. My Plan always included coming around to a place where we would talk about the good stuff too. I would do it here or there, or y’all would send in something great in one of your stories. NOW we have an entire series devoted to the good stuff…the Light. 🙂
Maybe your PANDAS Silver Lining is a life lesson you’ve learned. It might be a favorite quote or a scripture or a passage or a poem that always buoys your spirits. Perhaps you met somebody awesome inside this mess we call PANDAS/PANS. Possibly you’d like to share one of your PANDAS/PANS child’s recovery milestones. Maybe let us know about something that brought a smile to your face that will make others smile. Did somebody go the extra mile for your PANDAS/PANS child? In other words, a PANDAS Silver Lining can be whatever gets you through the night…or day. 🙂
Your PANDAS Silver Lining can be somebody else’s lifeline as much as it is yours.
We’re all in the same big boat here. We’re all wearing and sharing our life jackets on the stormy seas of PANDAS/PANS. Let’s hold hands or at least stay in arm’s reach. We don’t have to sing Kumbaya or anything. Ha ha! But we need to at least try to get along. Help and Not Harm each other. Yada, yada, yada and blah, blah, blah. Let’s just be nice. We all have sick kids. This is what I remind myself whenever I’m getting pissed off over something happening in the PANDAS/PANS Community. (As if OUR Community ever has any contentious or political issues pop up. Us?! Why would I ever say such a thing?!?!? LOL!!!)
To start, I’ll give you 3 of my current PANDAS Silver Linings:
1.I’m celebrating the fact that at 4 months post-IVIG, Jesse is holding steady and doing very well. And he has not gotten sick at all during this time. WOOHOO!!! Usually by now, we’ve lost any IVIG gains because he got sick. Three cheers for the April IVIG versus his other November ones. Hooray! Hooray! Hooray!
2. I’ve made some really great friends on this crazy PANDAS ride. Women and Men that I truly adore. <3
3. I’m happy that I can use my creative skills to help others stuck in this PANDAS/PANS awfulness or darkness. This blog and my other creative stuff helps me, and I hope it helps you too. It’s my pleasure to do this work. It helps me find my Light in all of this Dark. 🙂
What are YOUR PANDAS Silver Linings?
You might have to think about it. And I mean really think. Really, really, really, really think. LOL! But there is likely something that you have discovered about yourself, your child, or life in general. When you want to share your PANDAS Silver Linings, just click here. You can also find a “PANDAS Silver Linings” tab on the PANDAS Sucks web site (open 24/7/365 or 366 in Leap Year). I’ll be sharing these periodically like I do with other PANDAS Sucks: Your Words series.
And if you can’t think of a PANDAS Silver Lining, remember you can always complete the sentence “PANDAS Sucks Because….” That series is alive and well and will continue as long as there’s reasons…in other words it will go on and on and on and on and on and on and on and on.*
*(THAT is one of my favorite songs, I Forever. So nice!)
Tell us why YOU think PANDAS Sucks. Click here.
We post these reasons in a blog series.
Want to send a message to Sarah? Click here.
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. Also see PANDAS Sucks on Facebook, Instagram, 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.