My Life on Lupus: I Fear

The past 24 hours or so have been really shitty. That’s what I get for trying to have a life. My oldest and dearest friend Donna and I went to see Paul McCartney on Sunday. We spent major bucks to get a seat on the floor, and it was 100% worth it. Now, though, I’m barely functional. And whenever that happens, the fear starts creeping in:

I’m all alone. I’m going to die. I have to take care of myself, my son, my house, and there’s no one around to help me.

It doesn’t make matters better that I’m terrible at asking for help. I’m a bona-fide loner and always have been. I hate the fact that I can’t earn a living like everyone else. I hate the fact that my husband has to be the sole breadwinner. I hate the fact that when I’m laid out, my husband has to do everything after a long day of work. I hate the fact that death happens and separates us all from each other. And I really, REALLY hate the fact that what should have been a transcendent, once-in-a-lifetime experience sitting twenty rows away from Paul McCartney has to wind up with me lying on my back wondering what it’s going to be like when I’m completely debilitated and my entire family is dead. (Okay, yeah, that’s not really going to happen. That’s the lupus sinking its teeth into my psyche. Still, it’s hard to talk myself out of this sort of thinking when it really gets going, and the juices of depression and fear just won’t let go.)

Anyway, today I’m doing something I’ve never done before: I’m posting one of my creative pieces on my site. I wrote this about fifteen years ago. It never got picked up by any of the literary journals I sent it to, probably because it’s too long and rambly and sometimes it’s a little too cute as well, the humor a wee bit forced. I want to post it here, though, because I can’t submit it anymore, I can’t work on it anymore, yet I still want it to be out there. We lupies don’t really have a pool of literature, and we need one, if only to make people understand how confusing and lonely lupus can make you feel. Also, I don’t want to feel like I contributed nothing, have no written legacy anywhere, except for a few poems and essays and a little tiny chapbook that only sold 100 or so copies. For a self-absorbed writer like me, that completely sucks donkey balls.

The essay is under Miss Fickle’s Lupus Story now. Please read if you’re interested.


2 responses to “My Life on Lupus: I Fear

  1. I commend you for still going to the concert. Sometimes we have to live, even if we know the consequences. I live my life doing that same dance… and sometimes, the consequences don’t catch up. 😉

    • Thanks. Yeah, it’s hard to know the consequences. I find it hard not to blame myself for _not_ knowing the consequences before they happen. But if I worry about that, then I don’t ever do anything.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s