That was from Spiderman.
“Remember Robin, always look both ways.”
That was from Batman. (No shit, Batman, good on ya.)
I use a saying as well, it might familiar to all of the other Superheroes out there…it goes something like this:
“My disabling chronic illness is more real than your imaginary medical expertise.”
But it’s not MY saying….it’s OUR saying….all us Superheroes….us “spoonies”…us chronically ill “but you don’t look sick” individuals across the global community…
…because it alludes to our most obvious superpower….INVISIBILITY.
Take this morning, for example:
I try to get moving to gather the strength I need to get out of bed. Damn, I really have to pee! I’ve got to be quick…as quick as a thundering herd of turtles, I was…I started with moving my swollen, inflamed, burning/searing red ankles…I progressed to my aching, throbbing knees pulsating to the rhythm of the “dammit, I have GOT to pee, get GOING!” mantra drumming through my head…started moving my hips, purple and black and blue with bruising and oh-so-tender-please-don’t-let-the-blanket-touch-them…my arms frozen yet on fire…searing hot burning red, like the sun herself slapped them…started my shoulders turning to roll my bloated, swollen carcass over the edge of the bed…
Nothing…NOTHING in the entire realm of the universe could have prepared me for what I was about to see…the horror…I have tears in my eyes just typing my recount of this morning…I saw…*takes a breath*…
I saw nothing.
My ankles looked like ankles. My knees looked like knees. My hips looked like hips. And my shoulders…”Holy crap on a cracker, Batman!!”…they looked like shoulders.
Other than the malar rash, which I ALSO couldn’t see because I’m terrified of having an emergency in the middle of the night making me leave the house that I sleep with my makeup on…well…I looked just fine this morning.
Only the very adept at reading me would see the sunken eyes from troubled sleep…AGAIN…and the accompanying swollen eyelids…AGAIN. Nope, pretty much looked like just plain ol’ me.
I couldn’t believe it. How on earth is it even remotely POSSIBLE to have absolutely freakin’ NOTHING to show for the amount of pain I am experiencing?!?!
Yes, I have the power of invisibility SO completely honed that even I, ever enduring, cannot see the wrath that my own personal brand of kryptonite is wracking deep within my body…my mind…my very soul…
No wonder we, as spoonies, hear “Oh, you look good today, you must be feeling better!” and want to suddenly become a member of the X-Men and touch you and MAKE you feel every burn, every piercing, stabbing pain…every ounce of bone-crushing fatigue…oh yes…we’ll take the gloves off to do it, we will!! We ALL wish we’d been invited to Xavier’s School for Gifted Youngsters…
I often struggle with my power…I often want to trade it in for, say, superstrength, or superspeed (okay, I concede…anything faster than a thundering herd of turtles would constitute “superspeed”)…but NOT superabilitytoreadyourmind…hell no!!…no, if I could hear what some on the “but you don’t look sick” bandwagon were thinking, I’d be liable to bitchslap them and end up on the evening news. That would interfere with my researching and blogging. EVERYone would suffer. No, thank you.
Then I got to thinking…are there things we could DO, or ARE doing, to let it be known that we are enduring a chronic illness? Do we…CAN we…possess our own “Bat signal”?
Hmmmm. Well, if you break your arm, you wear a cast. If you endure cancer treatments, you often lose your hair. Dialysis requires hospital visits where you can see the blood filtration process…
Hmmmm. Do you need to use a cane? Do you use a cane because you really need it, or because it gives credibility to your condition? Or BOTH? Did you install bathtub handrails? Do you get your “easy open” medication bottles AND leave them out for others to see? Did you leave your compression gloves/socks on when family came over to visit? Do you wear an “awareness band”? Did you buy a shirt with your illness’s cause on it?
What is the correlation between our psychological need to “be seen” and our ability to manage our chronic disease(s)!?
‘Tis an interesting thought, no?
Like, for example, when my loving partner holds a can of (random pick of…) diced tomatoes in his hand and I want to slam it down onto his wrist. Repeatedly. I think three or four times would be the equivalent of my wrist pain on a flare day.
Do I do it? Of COURSE not…but how else would I make him understand the level of “bloody hell, PLEASE make it go away?” I feel on an almost daily basis? (I’ve been in a flare since the last week of December, 2010)
WHY? WHY do I let the general public dictate my stress levels and the resulting just-like-I-need-air-to-breathe NEED to SHOW my diseases?!?! Have I not earned enough “worth” in the eyes of my family and friends that they would just believe? People believe in far greater things in life without “proof”…am I not worthy of that same kind of belief?
These are the things that I think about while I’m struggling to type out a blog post that I believe will give credibility to the millions of others who are struggling with their own superpowers on a daily basis…
…these are my confessions of a Superhero.