carefully mad wars

we are
born like this
into this

into these
carefully mad wars
from "dinosaurs, we" by henry "hank" charles bukowski


Watched a Bukowski documentary last night. I was both fascinated and repelled. Struck, at times, by what it means to have a calling. Absorbed by the walking disaster that was Charles Bukowski, envious of his prolificness, his tenacity, disgusted by his misogyny, sympathetic to his hardened heart and humbled by moments of rawness that uncovered pain writ ugly and violent. Sparks. Pock marks. The little things that make us mad, as in insane. Was he insane? Nah. More bitter, more enraged, more more more. That's what he was. More of everything than most people ever hope or fear to be.

But what I really want to say here is that I haven't weighed myself in two months. Solid. I took a walk today, about 45 minutes, leisurely, but it was the longest I've taken in 62 days. I've got a bad outbreak of hidradenitis suppurativa, the worst of it on my inner thigh, and it hurts like hell. Interestingly enough I read that cigarette smoking exacerbates this condition. So the little nasty habit -- four, maybe five cigarettes a day --that I developed whilst dealing with the VN created (besides lungs screaming for mercy) --or at least contributed to--the eruptions that now make it so painful to wear anything without an elastic waist or any fabric that doesn't breathe well. I've been living in linen. I love linen, but sometimes my affinity for letting the garment's personality come out in the wrinkles get a little old. I'm afraid to try on most of my clothes.

We cancelled our trip to the Pacific NW. I was stressing about flying, not the regular kind of stressing but more centered on what could happen, remembering how I ended up sick (The Sickness from which I am still recovering, still held hostage by) the last time I flew, and then worrying about what I was expected of me--or, more to the point, what I wanted to do-- at the other end, you know, actually travel. After all, I wasn't going to some beachside resort where I could plop myself down for a week straight. We were headed for Seattle, then Vancouver then P'land and many stops in between. My mother said "Yes, you'll be doing things that are far more rigorous," to which I responded, "I don't do rigorous. Not right now."


I thought, finally, that I would meet my blog partner, that we would hug and laugh, maybe nervously at first, then from the gut, how we'd hang out, cook, watch the sun set, walk to the salmon runs (do i remember you saying ladders?). Not meeting her, is, for my part, the saddest part of cancelling our trip. But to tell you the truth, the idea that I could put off that meeting a little longer was a bit of a relief.

Meeting a person online, and meeting her online in a forum such as Weight Watchers, is not without its perils. I've told this person I've never met some of my ugliest truths, admitted to her my persistent and relentless pursuit of a different body. I would have met her one week from today, I think (Or from tomorrow. I'm blanking at the moment.) And I'd come face to face with someone who knows that what I appear to be on the outside: somewhat confident, grounded, unconcerned with her size (these all gleaned from close friends' comments)--bears no resemblance to how I really see myself. The way I am seen. What I choose to let others see, but not her. Not yet. I've been sick and sedentary for two solid months. I know, this isn't a competition. It's not about who keeps playing and who waits out the season. I don't like this particular body, this momentary body, because it hasn't been feeling momentary. It's been dragging on for weeks and weeks, and I can't seem to catch a break in the sick clouds.

I haven't had a cigarette for five days. That's something.

In order to get a vacation, which both of us (esp. S.) need desperately, we're heading to Crested Butte for a few days, about four hours from Denver, three nights at guest house that sits up against a mountain. Daisy and his mouthy brother will stay here with a neighbor friend. Neither S. nor I have been to "Crusty Butt," so we're excited to explore that part of Colorado. I want to hike. (I don't know that I can hike.) I want three days straight free of VN symptoms. Perhaps a little peace, please.

I just took a break and went out to the garden. It's so beautiful this time of year. I stood and stared at a bed of black-eyed susans and lavendar and thought about this blog and how it seemed whiny somehow. Unavoidably so, actually. I told myself that I would come back inside and write about the garden, how it's become more than a sanctuary--it's a true companion. I go to it everyday and walk its edges and together we grow in this world. Is this grace? Is it humility? I'm not sure it matters, at all, in the end. It's a cosmic tap on the shoulder, a reminder that all is far, far from lost. I'm on the leading edge of a perfect storm. There's plenty of clear blue ahead of here.

trying to be a better citizen

For all the tearing around by body that I do, I am notoriously lame about stretching. In fact, I have often told myself that the bit where I go slower at the beginning is, in essence, my warm up, and that I'm prolly stretching as part of that.

Weak sauce, I know. So right this minute I'm gonna go lay on the ball and stretch out my legs and back and arms and treat this body right. I gotta.

small victories

I drove to work today!! What a victory. I had a shit eating grin on my face the whole time, and had Patty Griffin singing loud as I slowly navigated my way to work. It felt so good to be behind the wheel of my new car, esp. since making a $300 payment this month and not driving. Nothing like paying for something that you can't do.

I'm thinking I might be able to go for a real walk tomorrow too. I've taken some short walks, just a couple of blocks, and I've felt okay, so it's time to test whether of not I can walk for, say, and hour and not feel like I'm going to fall down. It will probably wear me out completely but it will be a good wearing out. I'm just taking it one hour at a time, thanking the blue blue heavens for allowing my recovery to continue.

Yesterday I had lunch with an old coworker who told me, upon hearing about my health saga, "my husband had the same thing!" We talked about how hard it is on the partner of the sick one; how this is one of those illnesses that is so relentless and unpredictable that it's easy to fall into the mindset of "I'm going to have to live this way for the rest of my life," and damn anyone who tries to tell you otherwise, especially those who pull the "be positive!" jive. Yes, it's true, stress exascerbates VN big time, so reducing stress in one's life is one of the keys to recovery, but it's hard not to freak out a bit when you're sick to your stomach all the time and you can't focus on anything and you feel like you're walking on uneven ground. One of the things I've learned is that no amount of blinking will change things. I just have to sit down, chill. I also have to watch my time on a computer, because "the wrong" eye movements can bring on symptoms. I thought I was crazy for awhile there until I found www.dizzytimes.com and realized how many people all over the world have walked in my shoes...the validation helped, but I also read about people who have fought this condition for YEARS. That depressed the hell out of me, so I try not to frequent the site too much.

All in all, though, I think I might be coming out the other side of this tunnel that has been my life since Memorial Day, 2007. My saving grace? Haven't had a drop of alcohol for three weeks, and before that I had two beers, one whiskey. Drinking and VN do not mix. I like how I feel without alcohol in my system. No doubt I'll tip some back again soon, but for now, I'm enjoying my non-drinker status. At least I refrained from ingesting more calories on top of the food I managed to cram into my mouth hole.

(see? that's just the kind of self-deprecating humor I gots to leave behind at some point...)

Onward, straight ahead, steady as she goes...

on having a big butt, varicose veins, a wee lopsided abdominal distention and being a bad mamma jamma

Sometimes (late at night, when I'm driving) I think about this whole weight-loss body-change thing and wonder if it doesn't feed into our insecurities on an even deeper level. I mean, in losing weight we move closer to the "ideal" but the problem with that "ideal" come all these impossible (and let me just say it: fucking shallow) tangential expectations. Buns of steel. Abs of Steel. Six-Pack. No Cellulite. Ripped Arms. Low Body Fat. Yadda Yadda Yadda and Blah Blah Blah.

Other than a few persistent issues (what can I say, I've used my body for a living for a lotta years) I'd say I'm in the best shape ever. I'm strong, I'm healthy, good cardio health, great blood pressure, you name it. So I've got all that good stuff. And I am inherently "flawed" in the eyes of this other, dominant vision of healthy perfection. I got me a dimply ass and my legs have got enough spider veins for a horror flick. My big strong arms still have that waving old lady thing going on, but you know what? So do Mick Jagger's. Yeah, my waist and belly are smaller, but there's no undoing that 4-inch scar and all the bulging built by the healing of that open wound.

I could go on. I should go on, but it's a really lovely day out and I wanna go paint my toenails.

The point is this: we have choices-- to be in our bodies, to be in our power, to push from within or to be outside, looking in, judging and squelching and squishing ourselves to be what? All the same? Airbrushed wonders? A more palatable vision of womanhood? The ideal human being?

I sound like I'm all wound up. I'm not. I'm mellow gold. I sometimes laugh at the irony that with my plethoric imperfections I am so powerful, so capable, so utterly free.

the eighth cranial circle of hell

Today I spent four hours at the doctor's office and left with the most definitive diagnoses I've had yet: vestibular neuronitis, or inflammation of the eighth cranial nerve. I'm not supposed to be dizzy (still) if it was just BPPV. I'd prepared a list of questions and S. helped me make sure that all of them got answered, even the ones that seemed out of left field, like "Marijuana helps immensely with the nausea but will it negatively affect healing?" (The Answer, from a grey-haired Jewish otolaryngologist with big yellow teeth and balls of spittle in the corners of his mouth: "I don't know.") We asked about activity levels, concentration, reading, computer time (yes, it can be very hard, time reading and writing needs to be limited), the constant nausea...I can do what I want (within reason) exercise wise, though a cane/walking stick would help; valium is supposed to relax me enough to also relax the inflammation (interesting) but it will only mask the symptoms too...I'm supposed to give it three to four weeks and if I'm not much better, more tests.

The NP started to clean out debris from the bad/sensitive ear and I got to this point after which I could not go on...the vacuum in my ear, that sensation that your brain is being sucked out, the sharp pain...I simply started to weep, my hands over my face, and said, over and over, "I'm sorry, please, I just can't take it, I just can't, I'm sorry..." and so she stopped, and S. was there holding my hand and I could hear her crying too...it was embarrassing and I felt like a coward but everything in me just said STOPGet out of thereLeave me aloneI've HIT A WALL OF DESPAIR and I cannot climb over it.

Next, a very nice (Family, I think) audiologist named Mike came and took S. and I to the audiology "chamber" wherein I had my hearing tested. I am profoundly unbalanced in my hearing (of course) and have a 73% loss (approx.) in my right ear. My left ear is holding its own, but needs to be watched very carefully. We discussed BAHA, which is a new-ish procedure that works by using a titanium screw as a sound conductor--the screw is literally placed in the skull and then there's this little device that you hook on to the screw that works as the amplifier. It's fascinating technology, and I am the "perfect" candidate for it, but I'm not all that sure that I want a screw in my head. I'm screwed up enough.

Mike went over my tests with S. and I and then took us back to the microscope room, where eventually I saw a real ENT (instead of a NP with an ENT bent), precipitated, I'm sure, by my small breakdown in the chair. He did the Hall Pike manuever, poked and prodded, suctioned more out of my ear (he was very gentle, actually) asked me lots of questions and then gave me a diagnosis. "So it's just a waiting game, really," I said. "Pretty much," he said.

It took the pharmacy a long time to fill one script for valium. Finally, S. and I stepped out of the Kaiser building and into the hot, windy afternoon. I had a diagnosis, yes, but as we all know, medicine is an inexact science. They can't SEE my inner ear so they can't KNOW 100% what it is that makes my life so imbalanced and "off", but I'll take what they can give me at this point. It beats thinking that I'm dying, or that I'll have to go on disability at work. I have been cleared, at least, to WALK. And that will be my salvation, pukey stomach or no.

lighten up

I've been thinking much about a conversation that I recently had with a dear old friend of mine, Sue. We were talking about how hard it's been to be so out of it for so long (the BPPV/ear infection) and how I have this tendency to backslide in the beating-myself-up department when I'm sick. I'm aware that I have huge issues around being sick--as in, I have no tolerance for it and try to move through it quickly and when I can't, I feel like I'm being punished or something--but there's also all the attendant issues: not being able to exercise makes me feel like a fat loser; the slow nature of my recovery makes me think that I will never truly get better; depending on S. for cooking/cleaning/anything involving bending at the waist makes me feel like a fucking invalid; and my inability to complete a whole day at my job without feeling like I'm going to pass out pushes my "incompetent" buttons, as well as pulling hard on the "you're not as sick as you say you are, right?" lever.

It all came down to this, really, actually two things: 1) beating the shit out of myself for things beyond my control is counterproductive to healing and 2) this is one of the hardest times of my life and it's making me NUTS but it will pass. It WILL PASS. If I push myself too hard the recovery will take longer. This is not what it's going to be like for the rest of my life, this daily dose of debilitating dizziness. I must recognize INCREMENTAL progress, painfully slow as it may be. And I am not going to turn into a 300 lb. hulk before I get better.

That last point is the one that's hardest for me to handle--I am NOT convinced that, at this very moment, I am less than 250 lbs. The thought of it sickens me. But I can't get on the scale. If I confirm that reality, I will lose it completely. I know we often talk of how numbers aren't all there is, but at this moment, today, that number could make or break me. I don't think I could recover, because there's NOTHING I CAN DO ABOUT IT now, save for simply not eating. And I tried that, and S. wasn't happy with it because it wasn't helping me heal and it actually did make me feel worse to not eat, even with the persistent nausea.

this is, of course, exactly what my conversation with Sue was about. Asking those questions: So what if you're 250 lbs? You're sick. You find some comfort in food. It's NOT a permanent state.

Me: It doesn't matter. I was doing so well. I'd lost weight. And now this. (small voice: I deserve to be fat and unhappy.)

I'm not entirely sure how to lose the fear of getting on the scale. It feels like the wrong (high) # popping up in red digital numbers is enough to send me reeling into another spate of self-hatred and rage against the Body Machine. I don't need it now, so I'll avoid weighing myself until I've been able to exercise for a week, at least. Not that one week's worth of exercise is going to make a dent in pounds gained over a month's time, but at least I'll feel more capable of doing something about the dreaded number. For now, keeping that number unknown is as necessary as breathing. It feels that precarious, in here. It feels that powerful.