I’d like to extend a formal Thank You to the ALS Ice Bucket Challenge for helping me find my muchness. Seriously, where the hell has it been for the last who knows how many months? Not where it needed to be, that’s for sure.
When I first saw the challenge popping up on my Facebook and Instagram I thought “this is cute, people freezing their butts off for someone with ALS.” Then I started to really realize the scope of this thing: millions upon millions of dollars raised, entire professional sports team freezing for a cause. And dialog. So. Much. Dialog.
Suddenly everyone is talking about ALS and the many, many ways it impacts families all over the world. People talking about their symptoms, educating their neighbors and searching for a cure. People advocating not only for themselves but for each other.
This is amazing! Bravo for being able to say “this disease is terrible, and it’s painful and it breaks people’s hearts and we are going to talk about it.”
And here’s what I would like to say to those of you who are complaining because it’s boring you, or you’re annoyed or simply don’t want to see another post.
Shame on you.
It’s okay to flood my feed with profile pictures where you crop out your friends so the only person we see is you, but how dare I show you I support a cause?
It’s totally fine to watch video after video of cats, or dancing birds or people pulling pranks on each other. But talk about a disease?!? So sorry to bore you.
How about those e-cards everyone loves to post so they can make a snide comment to someone who is bothering them without actually having to speak up for themselves? Something along the lines of “No, no, no I’m not insulting you; I’m just describing you.” This passive aggressive way of telling our Facebook “friends” we aren’t really friends is completely within the Preferred Post category, but an illness? No. Way.
Let’s talk about the self-proclaimed nutritionists who push teas and supplements filled with the very preservatives they claim to loath. The posts shaming their fellow grocery shoppers for filling their carts with items you yourself wouldn’t eat. The judgment you feel righteous enough to dole out to those who don’t walk the same path as you. But talk about my pain for a day? Never.
I have to say I am a bit ashamed of myself as well. For 4 years now I have been living my own private soap opera staged in doctor’s offices and operating rooms and for the most part I keep it to myself. Rarely will you find a trace of my sick life on my social media pages. Why? For exactly this reason. I am terrified of the judgment and the digital eye roll that almost always comes after someone reads a post related to an illness.
What I should have been doing for myself is exactly what I did today for people who I have never met. Advocating. Speaking out. Making noise. Getting soaked with freezing cold water and flooding my feed with things that actually matter instead of the meaningless crap that my Facebook “friends” would rather see.
If you suffer from any kind of disability I urge you to speak out, and I promise to do so more myself. It’s time to say “too bad” to the people who get uncomfortable or bored when they see real life in their feeds. Let’s fill a bucket for every person who has ever suffered from a mental illness or disability, for those who are suffering from Cancer, Diabetes, Chronic Fatigue, Ehler’s-Danlos Syndrome, Fibromyalgia, Chronic Migraines, back pain, Rheumatoid Arthritis, Lupus, Crohn’s Disease, Pelvic Congestion Syndrome, Chronic Inflammation, Celiac, and the list goes on, and on and on.
We are the only ones we can truly count on to tell our stories, we are the only ones who can make it easier for those who come after us. This is our role, our responsibility as not just fellow Spoonies, but human beings.
To those of you who find this overdone, or boring, it’s best you find the “unfriend” button now.
If you’d like to entertain yourself with the proof of my personal experience freezing my butt off for ALS you can do so here –>