This is not the normal I seek.

meri 2013.08.28

I’m having an annoying day, and needed to rant. 

At some point in the recent past, the contents of this blog were used against me. Basically, it was found (based upon the contents herein) that I lead a normal life, and do not seem to be troubled by any serious ailments. This seems to me to be the most egregious sort of judging a book by its cover. No, I don’t talk a lot about my physical woes here. I made one post, long ago, detailing what I go through on a day-to-day basis. That post was entirely ignored, and my life was summarized as being normal.

Well, screw that.

We’re all aware of the concept of the shifting baseline. My baseline for normal has shifted so much that, when I look back on what I used to consider normal, I weep. I think of all the things that I used to hate to do, that I would give almost anything to be able to do again: Sit and work at a computer for 12 hours straight. Stand in line for some incredibly annoying reason. Go on marathon errand sessions. Sit in traffic on the Beltway at the end of an already long day. Lift servers into racks. Run cables. Clean. Do the dishes. Carry laundry around the house. Walk through DC in the heat of the summer. Climb stairs without pain.

All things I can’t do any more. That I long to be able to do, because normal people can do these things.

And then I start to think of the things I used to do that I loved, and I lose it. It hurts so much to think of these things that I generally don’t let myself. I keep the memories of a healthy me locked away, because it hurts too damned much to take them out and look at them. Going hiking. Driving to Massachusetts on a whim to see my dearest friends. Guerilla shopping trips with friends who hate shopping as much as I do. Being able to sit upright for more than a few hours at a time. Being able to stand upright for more than a few minutes at a time. Dancing. Playing hostess to gatherings in my home. Going on picnics. Running up the stairs to my second floor apartment. Rearranging the furniture in my home. Walking all of Maryland Sheep and Wool. Going to concerts. Playing tourist. Traveling. Organizing outings with my friends. Seeing my friends.

These things are all gone from my life, because of pain and fatigue which nobody knows how to fix.

My days pretty much consist of:

• getting up
• dealing with pain (both chronic and acute)
• spending as much time at the computer as I’m able to
• trying to sit on the couch and knit if I’m still able to
• taking medications
• seeing doctors / physical therapists
• sleeping, or trying to sleep

The highlight of my day is when G comes home from work, and I get to hear about his day, and try to find some way to make my day seem interesting. And once a week, I get to see Jenn and Jim and their menagerie of critters. Even if I just sit and knit, or geek, or read, I get to share space with them, and it is good.

And that is my normal. Three physical people, and the half dozen people I interact with digitally on a regular basis. They’re all that really keep me tied to the real world. I went from being a ringleader and active participant to being someone always on the sidelines, looking in, living vicariously through Facebook posts made by other people.

So, to the person who decided that my life was perfectly normal, based upon the entries made in this here little blog, you’re invited to try my version of normal for a while.