I’m going to start with a scene.
It’s early. The alarm goes off. I haven’t had enough sleep. I am not awake. But my subconscious knows the disturbance and knows what it means, and I sit up. My head whirls. I can’t focus. My head won’t stay upright. But the disturbance wants me up. I have to watch my arm in order to steer it to the bed post, where I grab hold and pull myself up.
No good. My head is on sideways, I can’t see the room, my legs won’t cooperate. I fall back onto the bed. My breath is fast, shallow. Not enough air. Can’t think. But I have to get up.
I try again. Both hands on the bed post, I manage to get to my feet. Forget walking; my legs aren’t mine. I fall into the darkness, bracing my hands on the dresser. My hand shakes as I force it to the door, slide it down to the doorknob. I turn the knob and it takes all my energy to coax the door open. The room spins. I move my knee forward and it lands hard against the dresser. Still I can’t find a good breath.
My face is suddenly on fire. I cannot do this. Grab the wall, fall against it; it’s even harder to breathe. I want to crumple to the floor but instead I move.
Stumbling into the hall, I brace my arm on the door jamb to hold me up. Smack my palm flat against the dining room wall and fall forward another step. Grab a dining room chair, the table, another chair, and then lurch across the empty walkway to splat headlong onto the sofa.
I’m done. I can’t move, can’t breathe, can’t think. It’s too late to go back to sleep. At this point, all I can do is lose consciousness and hope for the best.
That’s what happens when you try to wake me up early. But how do I Prove It? It doesn’t work to tell people I can’t drive my daughter to her graduation at 7 a.m., or I can’t be in another city at 8 a.m. for jury duty, or I can’t stay up late to raid in WoW, or I can’t go do pretty much anything that requires me to be coherent outside my normal schedule. I’ve worked hard to settle my body into a schedule that allows me to work, but it doesn’t allow much else. I have to work. There is no choice. Everything has to fit into that schedule, or forget it. But do people listen? Do they understand?
I’m not allowed to own my own body. The only way I can “have” lupus is if I Prove It. In most cases, that proof has to be in the form of an original Spenserian sonnet recited by a Breton taxi driver under a waxing blue moon while accompanied by a bass harmonica played by a left-handed pirate wearing gray bunny slippers and an Underdog backpack.
Uh, no, sorry, that was for a story I was writing. I like my worlds so much better than this one. This one really sucks sometimes. I have lupus, damnit.* I have the scars and the bruises and the internal damage to show for it. I’ve lived with it every day of my life for more than 20 years. But still I don’t “have” it unless I can Prove It. And Prove It, and Prove It, and Prove It, over and over again. Why can’t I just get certified and be done with it? I waste so freaking much time having to fill out paperwork and submit medical records for every little thing I do, and how am I even supposed to get a note from my doctor when I don’t have a doctor? Do you have any idea how long it takes just to get an appointment with a specialist, let alone get one who will write a letter saying you really do have lupus? And don’t even ask about how to afford it. I can’t.
If I have to be stuck with this disease, can’t I at least be allowed to have it? I can’t get rid of it, but I can’t keep it, either? That makes no sense.**
*I spelled damnit wrong, too, damnit. But damnit, maybe you won’t let me own my own immune system, but you can’t stop me from spelling words however I like, from eating M&Ms for breakfast if I choose, and from persistently using Oxford commas.
**Neither does a Breton taxi driver reciting poetry while a pirate plays bass harmonica, but I bet I could make it make sense if I tried. This Prove It mess? I don’t care how many volumes I might write. It will never make sense.