I find it kind of funny, I find it kind of sad…

Three years ago things were so different. Three years ago today my whole world changed. I left Northwestern, I transferred to Concordia, and I had my first back surgery. This one was mostly complication free, minus a fever and throwing up. That’s “mostly” because that was the first one. The second one, two years and two months later, left me with severe pneumonia (and a fever of nearly 105!), urinary retention, ruined my left leg, and more.

I was supposed to graduate today. I was supposed to walk and receive my diploma in the major I handcrafted – special needs ministry – so that I can be a hospital chaplain. I was supposed to be earning the diploma that I’ve slaved away at since 2008, even though I graduated high school in 2006. And I’m not. I haven’t. And I don’t know if I ever will.

My health, and my faith along with it, is no longer stable. Over the past year I have added three more antibiotic allergies to the two I already have, making it an absolute bitch when I’m sick. Which is often: I have a severe dust allergy which compromises my immune system, as well as an autoimmune problem which is still up in the air. I have disabling migraines a few times a week and my insurance has denied Botox injections. I am always sick these days and I am always in pain.

Athena and I moved recently, to a bigger apartment, just the two of us – leaving my best friend and roommate to move back in with her grandma. The loneliness alone is crippling. The pain alone is heartbreaking. Some days just walking to Kmart takes all my spoons. There’s piles and piles of stuff to unpack. My days are spent playing Pokemon and watching Netflix.

This is not how I imagined life to be.
This is not what I thought life would look like when I was nearly 27.

And if that’s luck, it comes at much too high a cost

So many times in my life I have been told that I am lucky. That I am lucky to be living on SSI and not have to work or that I’m lucky to be able to just stay in bed all day. If only all those people who told me how lucky I am knew the price it came at. If only those people who told me how lucky I am knew what the cost was of being this way.

There are days where yes, I am in bed all day, but I am in too much pain to read, to play a video game, to even get on my laptop or the tablet. There are days when I am in so much pain I can barely interact with my cat. And yes, there are days when I just stay in bed reading or playing on my laptop…but those days I also have to choose between having enough energy to get up and eat or get up and use the bathroom. Is that lucky? I don’t know.

I may be able to get all my student loan debt forgiven. Again, lucky? Maybe – I am grateful for that. But the price would be that I am far too disabled to work, to go to school, to have a productive life. I may be living on SSI and not have to work, but I’m not physically able to work. It isn’t even an option for me.
In college, I got told that I was lucky to get extended time and extra class skips. I was lucky to have professors who, for the most part, worked with me. But really? Lucky? Lucky to wake up in so much pain I can’t move, or even cry from pain because it hurts too much to cry?  Lucky to not know how much I will be able to function when I wake up?

I know most people don’t understand. They can’t. And I don’t think they realize how much simple words can hurt or the weight they carry. But it doesn’t change how it makes me feel. And it doesn’t change how terrible it is to have the world think you’re lucky, when in reality it takes every amount of effort to get through each day.

I may be lucky, but it comes at a price.

I am more than what I look like, and I’m more than where I’ve been

I am Nora. I also answer to Ang, Angel, Anniebear, Norabear, Liquie, Lique, and a plethora of other names. Never call me Angie. I am obsessed with Pokemon and Final Fantasy, Kingdom Hearts and The Legend of Zelda, Mario and Knights of the Old Republic. I read manga and watch anime. I never match my socks.

I love pictures and my picture frames are everywhere (not quite everywhere as one fell off the wall today. Oops. Must fix that tomorrow). I love fleecey blankets. I love my stuffed animals. I love books. I collect DVDs. I collect soundtracks in languages other than English for no reason other than it’s fun. I hate wearing velcro shoes.

I love my friends and am fiercely loyal. You mess with them, you’re messing with me. I love and laugh and play. I love to sing. I used to play violin, but it’s been years. I can also play recorder and tin whistle. I know that makes me wicked awesome. I also clearly enjoying using slang that makes me sound like I’m from England, but since I have a speech impediment might as well make people think it’s a bloody accent, since I get asked that constantly, right?

I love Harry Potter and Narnia. I love cups of hot chocolate with whipped cream and nutmeg, and cups of tea with milk. I love The Princess Bride and Monty Python and the Holy Grail, Fruits Basket and Fullmetal Alchemist, Air and Kiki’s Delivery Service. I’m a Disney nut and I know a great amount of random Disney trivia that can dazzle your mind. I collect sock monkeys and ladybugs, decks of cards and Beanie Babies. I love penguins and elephants, keychains and postercards.

I like playing in the snow although I hate the cold, I love being barefoot in the grass. I love the feeling of fleece against my skin, I love the feeling of a warm heated blanket. I hate hugs and physical affection, but at the same time it’s what I crave and long for.

I suffer from many disabilities and do not know what it’s like to live a day without physical pain. I also suffer from major depressive disorder, ADD, anxiety disorder, post traumatic stress disorder, and eating disorder not other specified along with suspected OCD, nonverbal learning disorder, and other things. I have too many physical ailments to list. I have both visible and invisible disabilities  but none of them are who I am and none of them define me.

This is who I am. Not just the last paragraph, but all the paragraphs. I am not just a cripple. I don’t have faith that can move mountains just because I’m disabled and I’m not a superhero. I’m a regular person, just like anyone else. I’m a person who wants friends, who craves love and acceptance. I’m Nora, above it all. I’m no different than you, please don’t treat me like I’m a lesser person just because I happen to be handicapped.

I hear the comments you make behind my back, and you can really bugger off. I watch you laughing as I’m struggling to open the door. I hear the snide remarks. I see the dirty looks. I’m not blind, I’m not deaf. And even if I were, you’d still be an asshole for acting like that. I’m a human being, despite my disabilities. I’m Ang, no matter how you slice it.

You don’t have to act different around me, just because I’m Angelique: Optional Parts Not Included (And Even Missing Key Parts!). I’m still a friend you can trust, someone who would love to watch movies and play video games with you. It doesn’t matter that I’m broken, because one day I will be mended albeit it may not be during this lifetime.

I am a person who loves rarely but deeply, who just wants someone to understand that I’m more than a disabled person. I just want people to realize that disabled people are just like anyone else. Even though at times we need more understanding, even though at times we may have to cancel plans last minute because we’re sick, we’re tired, we’re hurting, we’re in pain. We still are people, and just want to be treated as such.