Tag Archives: Invisible Illness

Long Live the Misfits

Long Live the Misfits

 I didn’t want to tell this story. This story is sad and unjust. It’s teeming with discrimination and humiliation and I’ve tried for the past week to find the words. I wanted them to be poignant, yet light. Personal, yet above it all. Victorious. Poetic. I failed. 

The truth is, last week I paid $100 dollars to go to a mandated workshop on how to prevent bullying and discrimination in NY schools. It was the last requirement I needed to obtain my masters– something I’d had to fight to finish once I became too ill to travel to campus. I called ahead, letting the instructor know that I was ill and that walking or moving around was very difficult for me. “Being a teacher myself,” I explained, “I know that many ice-breaker activities involve movement. So I wanted to give you a head’s up.” My assurance? “No one’s going to make you stand up if you don’t want to,” the woman laughed. I was led to believe it wouldn’t be an issue.

A week later, I was sitting in a conference room with forty other people, listening to this woman speaking about the perils of discrimination and bullying: about the eleven protected classes, one of which is people with disabilities. Then she asked everyone to stand up. I hobbled over and discretely reminded her of my limitations. She told me to sit back down, and announced over the microphone that people should come talk to me. Humiliated at being singled out, I sat, breathing a sigh of relief when it was over and everyone returned to their seats.

…Until twenty minutes later when she instructed everyone to stand and move to the open space on the other side of the room. I locked eyes with her, and she waved me off, as if to say, “you just sit.” That’s when I realized that even though I called ahead, even though any good teacher would have taken this information and tweaked their presentation so that everyone could be included, her version of “accommodating” me was to have me just watch everyone else. She drew a line in the sand: able-bodied, and not. And I was the only one on the other side. Ostracized. Humiliated. Marginalized.

Forty pairs of healthy eyes drilled into me, wondering, “why is she sitting? What’s going on?” A curious woman asked, “Oh, are you not with us?” I mumbled something, mortified. After several exercises, the instructor had them do an activity where they all made a long line. Which they made. Facing me. Staring at me. Cementing every fear, every piece of personal shame I’d ever had to quell since getting sick: that in a world of normal, healthy people, they were on one side. And I was the freak on the other.

I stared at my pen, too humiliated and too furious to do anything else. The irony that I was paying to have this woman teach me how not to marginalize people with disabilities was not lost on me. I got my certificate and waited until I was in the car with my husband to cry.

I have tried to write this story many times. To share with people that just because someone looks normal doesn’t mean you know their story. That disabilities don’t just come in the form of wheelchairs and visible impediments. That just because someone is an adult doesn’t mean that ostracizing them based on physical ability won’t be just as scarring.

This happened a week ago. I’m not going to pretend it won’t bother me for a long time to come. But one day soon, I will wake up, and realize I’m still here. Still breathing, still living; I survived this humiliation. And I’ll give up the shame, toss it aside like a tissue. For I know in my heart just how much I have to give. Just how much I am worth. After all, most anyone can walk about on their healthy two legs. But I know a truth they do not: of the value that’s found on the other side of “have-not.” Of “surmount-this.” Of freak. Of misfit. And a smile will steal my lips as I realize my strength; a strength that surpasses having two workable legs, and will live on long after that instructor’s body withers with age until it’s crippled like mine. She will have none of the tools. And I will be fine.

So to the woman who did this: I see your humiliation and I raise you fifty years. Until then, I declare: Here’s to all the freaks breaking the mold. Long live the misfits. 

Freak out,

The Foda

*For all my readers with Lyme Disease, I welcome you to join my Google + community: “Lyme Disease: A New Hope.”

Episode XXIII: My Invisibility Cloak

Episode XXIII 

My Invisibility Cloak

 Today’s Words of Wisdom:

 “Don’t judge a book by its cover.”

– George Eliot

 The Foda’s Take: Did you know this quote actually came from a woman named Mary Anne Evans, born in 1819, who wrote novels using the pen name George Eliot? So she meant this quote quite literally to the publishing world! How. Cool. Is. That.

 Invisible illness. It’s as elusive as a Jawa in Begger’s cayon. You can’t see them… but you know they’re there. Watching you. With those beady little glow-in-the dark eyes. Just waiting to capture you and sell you for parts. (Seriously- does anyone else think Jawas are the SciFi version of slave traders? Or is that just me??)

But I digress. Everyone’s been told the old idiom: Just because you can’t see it doesn’t mean it’s not there. Like The Force. Or Faith. Or Bigfoot. Having a chronic illness or long-term trauma usually works the same way. You know it’s there because you can feel it. But you look normal, right? And so how many times have people found out, smiled, and said: “But you look so good!” And you know what? They truly think they’re saying something nice! 

But it doesn’t exactly validate you, does it? That’s like telling someone who just lost a loved one: “Well, you look great! You must be already over it.”

Umm… no?

Henceforth, the conundrum of… Dum da-duh DAAAA!!! The Invisibility Cloak! Now this handy little contraption can be very helpful and super awesome. Just ask Harry Potter. There are some situations where it really is quite helpful to be under the radar. Like when your Aunt Beru is looking for you with a cup of that weird blue milk in her hand. (Fans, you totally know what I’m talking about. BANTHA JUICE, baby!) But now imagine… what if you had this cool cloak… but you couldn’t take it off?

That’s just it, you know. There isn’t a choice. (Unless you want to paste a couple of large braces on your legs or make super melodramatic groans and grimaces at random passer-byes.) Oh, you’re having a hard time picturing it? Here’s some sample text for you: Ohhh, woe is meeeeee!!!!!!

Although I must admit, sometimes I really like my Invisibility Cloak. If you meet me when I’m sitting down, I can usually carry on a perfectly normal conversation, pretend like my life is completely ordinary, and that’s just fine with me! After all, sometimes it’s nice to have a break from the How are you feeling’s and the What did the doctor say’s. But since people dealing with long-term hardships are often more isolated as it is, it doesn’t help also feeling like no one sees you, or understands what you’re going through. This is where being invisibly ill can create a real division of self. After all, if the world sees Princess Leia, but inside that body is a crazed Bantha… which one is the REAL you?

BOTH.

It’s not easy living this way, always feeling like you have two selves, with something to prove. And no, people aren’t really going to get it unless they’ve seen a loved one go through it, or lived it. But here’s the one part they don’t tell you about us cool kids who get Invisibility Cloaks. THERE’S A CLUB. And once you’re in, there are so many others, just like you, who will SEE you- all of you. You just have to find them. And until you do, well, you always have me. :)

Ciao for now,

The Foda

P.S. Are you a member of the Invisibility Cloak Club? Would you be interested in creating one here in The Foda’s Galaxy? Let me know! Subscribe, Tweet @TheFemaleYoda, or Email me at TheFemaleYoda@gmail.com and share your warrior’s tale, your thoughts, or even just your name. I’d be honored to hear your story.