This post has a theme song, so go ahead, click on the link and play it in the background while you read. I’ll wait…
Today, as I’m dragging ass as a consequence of indulging in ONE beer last night (Oh, Protospace I love you, but your lovely beer does not love me!) and I’m particularly aware of the limits my physical reality are pushing down on me (i.e. I feel like crap) I figure it’s as good a time as any to come clean on my slug-girl secret life.
@ajproc said in a tweet a few weeks ago about no longer trying to fit a square peg life in a round hole world (apologies Art, that is likely a very loose paraphrase). Something in that stuck with me, and I’ve been thinking a lot about my tendency to pass for normal. Chronic Fatigue Syndrome (ta da! first time ever I’ve publicly referred to my particular flavour of fucked up health) is funny that way – so long as I’m not burnt out exhausted and overstimulated, when I’m out and about there’s no real visible indications of my disability (gack, I hate that word – shall we use fuckedupitude instead?).
But the truth is, I’ve got a heaping pile of fuckedupitude I’ve got to deal with on a daily basis – and being as dealing with that, and dealing with maybe getting to be less fucked up, or building a better life within my fuckedupitudeness is a good portion of what’s going on in this 100 day project, I may as well be out with it.
I’m not normal, my life isn’t normal (there could of course be a hearty debate about what constitutes “normal” but I’m not going there right now). When I first started with samba (and was on an upswing with my health) I thought: here’s a whole circle of people who don’t know me, don’t know my history, don’t know I’ve been ill – here’s my chance to have a social sphere where my fuckedupitudeness (gosh I’m really starting to enjoy that word) doesn’t have any sway. Well I hit a humdinger of a relapse after that, and my friends at samba have seen me at my worst, and seen me through some bloody awful crises. A mixed bag of humiliation for the failure to pass as normal, and deep gratitude for the people who showed an incredible amount of class and compassion when I needed it.
And here I am again on the upswing (and terrified of the downfall – I’m sure you’ll get to read more on that later, ’cause it’s definitely in the top three of my Big Issues right now) and again opening up to another whole sphere of people who don’t know my history, don’t know what I’m dealing with Every Frickin’ Day and just see me in those times when I’m well rested (and absolutely bouncy with joy about being out and amongst such phenomenal people!).
But people are starting to catch on, l think my twitter peeps are starting to notice I make about 1 event for every 10 they attend. That simple question “what do you do?” becomes a loaded one, and I’m stuck trying to explain that this otherwise extracurricular stuff is My Big Thing, the rest of my days and energy are filled up with life management, napping, and trying to move a writing career forward (at 5hrs a week instead of 40hrs).
But thanks to @ajproc‘s little tweet, I too am abandoning efforts to cram my square peg life into anything other than what it is. I’m not going to bother trying to pass for normal.
Gravity is indeed working against me, it often gets me down. This half-speed slug-girl life ain’t like yours, but I’m making a pretty decent go of what I’ve got.
“Twice as much ain’t twice as good, and won’t sustain like one-half could. It’s wanting more that’s gonna send me to my knees.”