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.