I’ve spent a few hours now thinking about how I want to word this. In the last two and a half years, lupus is nothing new to me. I’ve become familiar with it, and I’ve learned to recognize when my body does things that it (normally) shouldn’t. I can recognize swelling before there’s even any visible signs, and I’ve gotten pretty good at determining whether or not I have enough spoons for an activity.
I am almost 22 years old. I have had to change my degree from a BA to an AA, and even still, I probably will not be getting that AA, despite the fact that I have just one semester left. Lupus is hard. Lupus as a young person is harder. My grades have slipped almost entirely beyond me, no matter what I do to keep them up. Brain fog makes that 600x worse. My University, while wonderful in many ways, claims to be one of the most disability friendly Universities in the state of Pennsylvania. I will argue that statement until I am dead. They are only disability friendly if you are visibly disabled. And even then, that could be debated, too.
I am almost 22 years old. I live my life in constant pain. Some days are better than others. Some days are not.There is no pain management for me. I am almost 22 years old. I should not feel that kind of pain. “Take some tylenol and target the areas with icy hot.” How does one target the inside of their bones with muscle rub? I am almost 22 years old. If I use it sparingly, a bottle of tylenol might last me longer than a week.
I am almost 22 years old. The world is supposed to be at my feet, my great playground for all the good I have the potential to do. Instead, the world is at my fingertips, with help from the internet, because I am literally trapped in a body that does not know how to function the way I need it to.
I am almost 22 years old. Sometimes I use a cane because I can’t walk on my own.
I am almost 22 years old. Sometimes I don’t shower for days because I can’t stand that long, let alone get out of bed.
I am almost 22 years old, and I am disabled. I work a part time job, two days a week, as a secretary for a private investigator. I like my job. It does not require strenuous activity. But I get tired easily.
“Y’know what, I don’t want to hear you’re tired. You only work two days and it’s only for four hours. You even get to sleep in.”
You’re right. But I am almost 22 years old. I cannot do the things that you can do.
I am almost 22 years old. And I am hopeful.
Because at almost 22, I live with the man I am going to marry. I love him more than I could have dreamed of loving anything, and he loves me in return. He is patient and kind, even on the days where I am not. He is everything I wish I could be and more, and I am honored that he calls me his.
We have lived together for over a year now. We are moving again in five days. To what will hopefully be our forever home. There’s a dishwasher in the kitchen. Which means no more excruciating pain while trying to do the dishes. Just loading them up and running the dishwasher.
There’s also a flight of stairs, but at the top of those stairs? A bathroom with a tub. But before things get a little bit easier on me, they’re going to get harder. Because we still have to pack. And move. And unpack and settle in and clean. There aren’t enough spoons on earth to provide a spoonie with the energy to make that happen in a timely fashion. But I’m going to do it anyway.
Because I am almost 22 years old. And lupus is not who I am.