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My Profile
Because I can't bear to eulogize Doug - 2008-08-19
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1:49 p.m. - 2004-05-31
So yeah, Memorial Day. Regular readers will know I’m a staunch supporter of our military personnel and veterans. I have too much on my mind right now to spool out a thing for Memorial Day. Sorry. I have to get over this adversarial mindset I have with the MS. I know on one side of things it’s been my absolute refusal to ‘give in’ which has kept me on my feet. The dead dog determination to force my body to find a way to make itself function has been my saving grace and reason for being for the last 15 years. So the most recent encroachments by MS feel like a personal failure. I just haven’t been trying hard enough. Of course I know how stupid this is. On some level I’ve always known this debilitation was coming. I also knew that force of will alone wasn’t entirely responsible for the long grace period I had. MS is fluky. It comes and goes and I got lucky is all. I had a pretty good run. Such a good run that until a couple years ago only a few trusted friends knew I had MS. I only told Mike’s family because SIL had moved to NJ and it was getting too hard to hide my illness. Visits too frequent to fake my way through. Plus I wanted to explain why I didn’t go back to work when Wolf started school. God knows I wasn’t anyone’s idea of a housewife. The bad things, the hard to swallow things are coming thick and fast now. Far faster than I can adapt and cope. I’m a spastic George Jetson on the runaway conveyor belt screaming, “Get me off this crazy thing!” I hate feeling helpless and out of control. I have to be in charge of myself. This is why I’m a witch rather than one of the faithful. Give over control of my life to some invisible God? I don’t think so. I’ll mind my own morals too, thank you. I have a pretty decent grip on right and wrong and I don’t need morality lessons from a backwards collared cheerleader. (Or from Bush and the Christian Taliban either.) Anyhow, I’m trapped in a terrible and futile loop. Some new part of me goes missing and my first reaction is a determined anger. “Uh uh! No you don’t. Cut it out this instant! I will be obeyed.” Then when it doesn’t get any better, I get scared. I see the ripple effect each new ding puts in my life. This the crip. Who can’t drive a car. Who never gets very far. Who wonders where her friends are. Stuck in Br’er MS’s tar and trapped in the House that Jack Built. I’m bitter too. Bitter because I feel like I did my part during the good years. There was a period of frivol that got a little out of control, but on the whole I was a responsible citizen. I put in the grunt time and if there’s any justice I should have been allowed to have some fun before it got this bad. Of course, I might still be working too hard and having too little fun if I weren’t so bad off physically. Hello, Involuntary Retirement. Enjoying her Golden Years since she was 35. Actually this isn’t true. It’s only now that life has settled into a routine here in the new house that I’ve become aware how furious I am over not being able to work at my trade. When I ‘retired’ I was pregnant with Wolf. Bed rest was the only way I was going to carry him to term. So. Then after he was born I went into a bad flare. This often happens to women with MS. They go through symptom-free pregnancies and then get hit with a tsunami of flares afterward. I could reasonably expect it would clear up after a while. It did, mostly. But by that time it was becoming obvious there was something off about my kid. He was HORRIBLE! He never stopped! He was immune to discipline! My life was consumed by Wolf. I literally went years without a break. Who had time for a job? This kid was a full-time career. Next thing I knew he was getting on the bus to kindergarten and I suddenly had almost 8 hours of freedom. Did the party start then? No! Because that’s when we bought the house. Another lost year. Scraping, painting, wiring. Again, no time for a job. I knew my body was getting creakier and the flares coming more often and hitting harder, but I was up to my armpits in paint chips and fabric samples. I didn’t think about it. I didn’t think what that ever narrowing window of functionality would mean to my ability to ply my trade when things settled down. Nowadays I have lots of time to think. I didn’t expect it to hurt this much. The unfairness burns me. And the losses keep coming. Sometimes nibbling away slowly, sometimes in great whacking chunks, but they come and come and come. I have to keep lowering the bar of expectation. What I can do. Where I can go. How long I can last. What reasonable is. When one is forced to re-evaluate one’s own limitations on a daily (sometimes hourly) basis it’s impossible not to see the loss. What qualifies as a ‘good’ day. What I can expect to accomplish in a given day. It’s nothing less than rubbing my nose in my own limitations. Constantly. Torturous for one like me who has always been a “Find the bright side” kind of person. The way to get through a miserable present is to focus on what good can be done during the season in Hell and what great things are in store for when the season in Hell is over. For every ‘can’t’ put in my path I found a ‘can’. It’s who I am. It’s what I do. And to be brought up short all the time is soul searing. “Nar nar! Can’t do that anymore!” My response to being told I couldn’t do something has always been a hearty “Fuck you!” and to go off and prove my critics wrong. MS does not respond to Fuck You. MS couldn’t care less about what I want. It runs the show now. I hate it and I’m mad as Hell. ~LA (This is a vent, not a sympathy troll. No worries about finding something helpful to say. I’ll be fine after I sick up all of this crap. Thanks, though. ~LA)
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