I can be the grouchiest, snidest, meanest, most outspoken, most outgoing, most self-confident and most arrogant person that you have or will ever meet……. while I’m sitting on my ass.
Once I try to stand up or move, I then I become a wretched, scared, embarrassed, helpless, humble, assistance dependent, shadow of who I once was or who I really want to be.
I’m very well acquainted with walls, furniture, random objects and floors; unfortunately it’s not in a proud kinky kind of way.
When I walk I resemble that of a 1 year old learning to walk. Wobbling with stiff legs, holding on to anything I can get my unsteady hands on, barely lifting my feet. I used to be “the shit” (there’s some of the arrogance). There was nothing that I couldn’t physically do. You name it, I could do it, or I’d sure as hell try.
Popping out of my chair and zooming here there and everywhere like a strung out humming bird was a no-thought-process-needed activity. Now I literally cannot chew gum or talk and walk all at the same time…. Kind of funny (pathetically) in a way.
Imagine a 5yr old on Christmas morning rip-roaring and ready to tear open all the presents and play with all their new toys, only to open the boxes and find them all empty and on top of that you’re told Santa has died. “Damn it!” That’s a small idea on how my brain works in relation to by body’s reality. In my head “I can do that”. In reality I’ll hurt myself attempting to try.
How about the never ending question: “Are you okay? Did you hurt your leg/knee/back/foot/whatever?” Easiest thing I could do is lie and say yep! Conjure up an amazingly profound story on how I hurt myself…. But then, the next time I see that person I gave the phenomenally false story to is going to ask why I’m not better. – Ah FRICK! it anyways.
I can be honest and say no, I didn’t hurt my leg, I have multiple sclerosis, and then hear: “Oh I’m so sorry, what’s that? But you’re so beautiful (just got that one, guess “sick” people cannot be pretty), And one of my ABSOLUTE Fav’s is… “My cousins’ brothers’ aunts friend had MS, she changed her diet and drank a magic potion while standing on her and now she’s CURED.
I know its innocently harmless naiveness, but I still. I too can be just as silly. I will admit to asking the same “oh are you ok?” when I have seen someone with a limp or a bandage. I do the Homer Simpson “Doh!” every time.
Reality is I 100% cannot walk without some form of assistance. I use a crutch to walk (SO sexy), at times a wheelchair, at times a walker and I use those shitty scooters at stores.
I feel so isolated, so alone. I do truly only have myself to blame. I see everyone around me living life. Parents going places and doing things with their kids, their families, by themselves; But I hate going places, yet I hate not going places. How much sense does that make??
I don’t want people to see who I have physically become. Yet - I don’t give a shit what people think. It’s an exhausting and painful uphill battle to physically get my to move; Yet internally I scream - DAMN IT BODY MOVE! SUCK IT UP YOU LAZY ASS AND JUST MOVE LIKE YOU USE TO! DO IT! NOW!!
Do you celebrate your MS Anniversary?