Butterfly Cauldron

For the last six years, I have knowingly shared my body with an invader.

Lupus. Popularly depicted as a wolf, due to the Latin and the supposed wolf muzzle appearance of the face rash. But I always think of my disease as a school of sharks, swimming in my blood. Sometimes they sleep, eyes closed, mouths closed. Deceptively peaceful. Othertimes they wake, startled and hungry. Eyes like fired stars, teeth -- the teeth are huge. Sharp, pointed and so very intent on rending and tearing up everything in sight. And the only thing in sight is my body, my organs, the muscles and joints, defenseless against them. That's what I see when I think of my disease. That's what's been sharing my body these last years.

I've been asked before to describe the pain Lupus causes me. I say: My bones are concrete that's been set on fire. My spine is shattered glass rubbing slowly against my spinal cord. Sometimes, I beg the gods to let the cord break so I won't feel anything. Electricity shoots down my legs and my arms, the muscles expand and contract, jerking against my will. I drop things, I run into walls, I fall. I cannot pick up my niece when she holds her arms up at me, so happy to see me, because I'm afraid I'll drop her and hurt her and I'd never forgive myself if I did that. Friends lay their hand on my shoulder and I cringe, sobbing. The smallest touch leaves me in agony for hours. The straps of my bra hurt. Breathing too deeply makes my chest feel as though it were ringed with iron bars. I'm exhausted. So very, very tired. But I can't sleep. I can't focus. I feel like I'm moving through a fog. My vision changes, things get fuzzy and my eyes dry out. My face flushes, while the rest of my loses all color. The slightest exposure to sunlight sends me to my bed for hours. Or to the hospital, if I'm unlucky. Rashes break out across my chest and arms. Sometimes they leave scars. And most of this, no one can see. Most of the time, I look perfectly healthy. No one knows how much pain I'm in. No one knows how hard I cry at night. No one knows how I go to work, then go home and go straight to bed.

How do I explain what this disease has cost me? How do I say: I can't go into the sunlight. I have to get 10 hours of sleep a night or I'll be very sick the next day. I can't make plans because I don't know if I'll be sick or not. I'm afraid to start a relationship because I couldn't handle falling for someone then having them reject me when they realized how sick I get. I can't work more than 40 hours a week, so I can't take jobs that would pay me what my time is worth because they all expect 50 hours, at least. This disease is isolating, even when I fight to stay connected.

And then, how do I say what this disease has given me? How do I say: I'm kinder to myself. I'm more forgiving. I'm more inclined to give people the benefit of the doubt. I'm a better listener. I'm a better friend. I'm a better human being. I'm more focused on what I'm willing to accept in my life. I'm less concerned with what other people think of me, in general. I'm more able to truly enjoy my body, what it can do and what it can experience and how it works, when it works. I don't take walking for granted. I don't take breathing for granted. I don't take a night's sleep for granted. A day spent painting means more to me. A day spent writing means more to me. Phone calls to friends mean more.

Some days I think it's worth it, others I don't. Right now, I'm lucky. Right now, I'm not having a flare. Right now, I feel good. Tomorrow could be different. Tomorrow could be better. I don't know. Only, the thing is, neither do you. We all go through our lives, making assumptions about our health, about the time we've got left, about our jobs or our families or the people who love us. But, they're all just assumptions. The only real difference between me and someone who doesn't have a serious illness is that I've been made starkly aware of how fragile that illusion of control is. I didn't want to be. I rather liked my illusion. I liked my plans to go on and get my Ph.D. I liked the idea of being a college professor. I had visions of teaching at a small liberal arts college, having a little house with a couple of cats and a cactus garden and many happy days. But that didn't happen for me, thanks to this disease. So now I have a different life. It's not a bad life, but it's different. (The bittersweet thing? Now that I'm well enough to go back to get that Ph.D, I can no longer afford to. I'm swamped with medical bills and student loan payments which I can no longer defer.)

Labels: Lupus

So, they're talking about clothing over at Feministing and it got me thinking. It's not an easy task finding clothing, that I like, to fit.

The reason for this are two-fold. One, I'm fat. Two, I'm tall. I'm tall in the way I'm fat -- not a little, but a ways up the scale. I'm 5'11, which is a perfectly normal height for a man but really unusually for a woman. Except for the women in my family, who are all my height or taller. (In fact, I'm the shortest woman born into my family. We're a buncha Amazons, we are.) Thanks to the nice people at Just My Size, I can generally find jeans long enough. Everything else? Eh, it's a crap shoot.

On the one hand, I'm lucky that my job doesn't require me to be dressy. I do all my work online, so I can get away with wearing blue jeans, t-shirts and sandals on a daily basis. Which is very good, because that's about the only thing I can find with any ease. I've got a few skirts, all significantly shorter on me than they were originally intended to be, and a pair of black slacks I lucked upon, but that's pretty much it. Hose? Tights? Ha! Good luck with that. Apparently, fat girls cannot also be tall girls. In order to get a pair of hose long enough for me, I have to get hose that are way, way, way too big around. If I decide I want to get them to fit my waist/hips, I have to get them entirely too short -- which renders them unwearable.

Dress shirts are pretty much out of the question. They don't make them long enough. Why is that? I need a shirt that comes down a bit below my waist. Why is that so very hard to find? I can find t-shirts and tanks that are long enough, but not dress shirts. Does that make any sense? And, should I manage to find one that is long enough, it gaps across the bust. Now, my breasts are beautiful and I'm certainly no prude. I like a bit of cleavage. But I don't need to be spilling out of my shirt on job interviews.

Because I'm poor, I have no money for a tailor. I also don't have the money to spend the amount may specialty stores want for plus-size fashion. And the paradox is, my inability to find clothing to reflect a higher station impedes my ability to achieve said higher station.

This concerns me, in part because I'm getting ready to interview for a job soon. One that has the potential to spring me from my poverty. (Oh, such sweet possiblity!!) I can see it already, me standing in front my closet once more, trying to find something to wear that suits the job, muttering under my breath. It's not just clothing, it's potential and the future. And so may 'average' sized women (and don't be me started on THAT term) take for granted that they can walk into any department store and pick something off the rack.

Labels: clothing, fat

This isn't news, of course, but the armed forces are still refusing to acknowledge Wicca as a legitimate religion. Apparently, even giving your life in the line of duty isn't enough to earn a soldier the right to have his faith acknowledged on his tombstone.

War widow holds protest service for husband, awaits plaque decision
By TOM GARDNER
Associated Press Write
FERNLEY, Nev. (AP) -- A war widow who wants the government to put a Wiccan religious symbol on her husband?s memorial plaque held an alternative service Monday as a protest, hours before an official Memorial Day ceremony nearby.
"This is discrimination against our religion," Roberta Stewart said at the gathering of about 200 at a park east of Fernley for her late husband, Sgt. Patrick Stewart. "I ask you to help us remember that all freedoms are worth fighting for."
A few hours later and a few miles away in this pastoral community east of Reno, official Memorial Day ceremonies were conducted at the Northern Nevada Veterans Memorial Cemetery.
The space reserved for a plaque in Stewart's name on a wall at the cemetery remains blank.
The Department of Veterans Affairs so far has refused to grant the Stewart family's request to have the Wiccan pentacle, a five-pointed star surrounded by a circle, placed on the government-issued plaque.
Stewart, 34, was killed in Afghanistan on Sept. 25 when a rocket-propelled grenade struck his helicopter. Four others also died. Stewart was posthumously awarded the Bronze Star and the Purple Heart.
Wiccans worship the Earth and believe they must give to the community. Some consider themselves "white"or good witches, pagans or neo-pagans.
"We are here today to honor American religious diversity of all faiths," the Rev. Selena Fox said at the alternative memorial service.
Fox, senior minister of a Wiccan group based in Wisconsin, said Stewart died defending the country that is denying him the right to express his religious freedom.
Jo Schuda, a spokeswoman for the VA, said Friday she did not know when a decision would be made on the request.
Approximately 1,800 active-duty service members identify themselves as Wiccans, according to 2005 Defense Department statistics

I'm struck by the image of that blank plaque. I can imagine it, surrounded by other plaques bearing crosses or Stars of David or sigils of other offically approved religions. I assume it bears Stewart's name, but perhaps not. But suppose it does. A name and nothing more, completely ignoring a lifetime of faith. You can't, of course, obliterate that faith -- regardless of how hard you try. Not marking a plaque or a grave does not mean that faith does not exist. It does not mean domination for the Approved Tirade (that being Christianity, Judiasm and Islam). It only provides an illusion.

Interestingly, to me anyway, the image of a blank plaque can be read as rather pagan. It can be seen as an image of the rune Wyrd (and yes, yes. I'm aware of the controversy surrounding the use of a blank rune in casting. I'm merely saying, lots of modern casters use it and it therefore can serve as a symbol of a pagan faith.). Wyrd is a totally blank rune, generally interpreted as signifying fate, the inevitable. Neither good nor bad, it simply is. Sacrifice is inevitable. Death is inevitable. Grief is inevitable. And, as anyone who follows an 'unapproved' path knows, fighting for recognition is inevitable. So, while Stewart's plaque (and, I'm assuming, at this point his gravestone) does not bear a particularly Wiccan symbol (although I know plenty of Wiccans who use runes), it may well already bear a pagan image.

Not that his wife should stop fighting. Frankly, she should be able to put anything on her husband's tomb she damned well pleases. We had a recent problem at our army base here where two kids were basically kicked out of Boy Scouts because they admitted they were Wiccan. There was a big to-do and eventually they were let back in. At which point, a bunch of other kids got pulled out by their parents because they didn't want their sons "preached to" by the Wiccan boys. Ironic, isn't it? Those boys had been in the club for a while, no one knew about their beliefs and wouldn't have, if the scout leader hadn't asked them what church they went to. (Funny story -- the info came out because the leader was trying to show the boys how religiously "diverse" the group was. He was saying how they had Baptists, Methodists, Catholics and a Pentecostal. No, seriously. That's what passes as religious diversity down here.) So, to keep peace, the boys parents took them out of Boy Scouts and have started a chapter of Spiral Scouts on base. And they've gotten lots of interested parties. A lot of people don't realize just how many Wiccan/Pagan/Heathen soldiers there are.

Which is why I think it's inevitable that we're gonna get recognition. It's like water, slowly reshaping the world. I hope Stewart wins and gets her pentagram. And I hope it becomes easier, for the next soldier, to have the government he/she died for recognize their belief system.

Labels: death, non-christian, pagan, religion, war

It occurred to me recently that I really like being alive.

Now, I realize that doesn't sound like a radical realization. But until fairly recently, the last five or six years probably, I've spent a good deal of my life severely depressed and occassionally suicidal. My memories of Episodes (that's what I call 'em) go back to about...eight or nine, I think. I was petrified of water. There was no reason, I just became, suddenly, horrified of water. I couldn't take a bath, because something was going to happen to me if I got into the water. But I couldn't tell anyone that, so I'd take my radio into the bathroom, drag one of my cats into the room with me, turn the music up loud, fill the bathtub up and lay on the floor crying, petting the cat, because I was so, so very scared. And confused. Logically, I knew, there was nothing going to happen to me if I got into the bathtub. I tried all sorts of things to work around it. I'd make up little rituals, moving all the possible dangers away from the tub. No razors, nothing battery operated, certainly nothing that so much as looked electrical. I even put the soap away, so I didn't fall on it. In the end, there was just a plain, blank tub full of water and I still couldn't get into it. And there was absolutely no reason for it, none. No childhood trauma, no near drowning. I was just suddenly, unexplainable terrified of getting into the bathtub. And I stayed that way for about a year and then, just as unexplainably, it went away. Just one day, gone. I could get in the tub, I could go swimming, whatever I wanted. No problem. And no explaination.

I started getting hung up on certain thoughts, after that. Random things. Like I was obsessed, and terrified, with getting my period. Nothing really strange about a girl worrying about her period, but this wasn't normal. I was so stressed and worried, I'd bargain with God. Not this year, okay? I just can't handle it right now. And...there wasn't anything bad going on in my life. Again, no trauma, no abuse, no nothing. I was just obsessed with...things...with all the things I was doing wrong, with how I wasn't good enough or smart enough or how I was 'sinning' all the time. (See previous post on the Evils of Fundamentalism, if you would.) Again, I couldn't tell anyone any of this. I just knew they'd have reacted badly. Or worst, they'd have been dismissive. It was all in my head, I was just being silly. So it all just kept building. I went through stages. When I got my period, that obsession faded. Then it was things like, oh the music I was listening to was evil and God would punish me for it. Seriously, I thought that. (Admittedly, I had shitty taste as a teenager, but I hardly thing God sends people to hell for that. Otherwise, damn, Hell is gonna be HUGE.) So I'd have to read my Bible every night, a chapter a night, or I was in trouble. Then it got to the point where I couldn't listen to anything but Christian music or I was going to Hell. (Yeah. Try finding decent rock Christian music in the 80s. Uh huh. Little did I realize it then, I was IN hell listening to that stuff.)

Anyway, the point is, I kept having these episodes and they kept getting worse as the years past. And I couldn't tell anyone about them, because in my very religious household, this things Did Not Happen. Regardless of the fact that my mother has a history of depression. Regardless of the fact she's got a lot of the same problems I do. These things Do Not Happen. If my mother had a rough patch, she'd just go to church a bit more often or pray more often. And that seemed to work for her. But it did not for me. (Again, see previous post about how the Fundy church warped my brain.) By the time I was 14, I was full-blown suicidal. I was just too depressed to actually act on it. It's a preverse irony, the disease that made me want to die also saved my life. I was too exhausted from just getting through the day to actually be able to carry out my suicide plans.

And I had them. Oh, did I have them. My father, as all good Southern men, is a hunter. And there are guns all over their home. Unlocked, with bullets right next to them. I know how to handle a gun. Dad made sure of that, since it would be irresponsible to not educate your kids about guns when you've got so many. And there were always pills in the medicine cabinets. Sleeping pills, pain pillls, all kinds of things for whatever illnesses my folks got. Then again, we lived right next to a creek. It wouldn't have been very hard to 'trip' and drown. And growing up on a farm, I could imagine a hundred 'accidents' that could quickly dispatch me. And yet, I was just so very, very, very tired. All I could do was go to school, come home and go to sleep. I couldn't physically DO anything else.

And then, I'd have breaks in the episodes. Sudden, almost complete remissions. One day I'd be so very depressed I wanted to die, the next I'd wake up and feel perilously close to normal. When those breaks came, I'd make myself believe I was better. It had all just been a test and I'd passed, so God was rewarding me. And I'd really believe that, until it started again.

And that was my life, for years. Until I was about 22 and in college. I'd gotten really, really sick and gone to the doctor. Who happened to notice I was depressed and put me on Prozac. I know people malign Prozac, but that damned green pill saved my life. It didn't 'fix' everything (because what was going on wasn't strictly depression), but it kept my head just far enough above the waterline so I didn't feel like I was dying all the time. I still got depressed, but my suicidal phases faded to once a year instead of every three or four months. (Yeah, I was seriously THAT depressed.)

But my physical symptoms increased. And intensified. Until I was ready to die, again. And I started going to doctor after doctor after doctor....who kept telling me I was just depressed and fat and needed to relax. For the next three years, that's what I got. So,I just stopped going to doctors. Just gave up completely.

Until the pain got so bad I couldn't stand it and went to one more doctor. Who finally listened. She listened and she did some tests and it turns out, HEY! I'm wasn't just depressed -- I had a serious, chronic illness that had been uncontrolled for years. It had a name (Lupus) and it had treatment and I wasn't crazy and I wasn't imagining things and yes, I was sick and yes, she believed me.

That was almost six years ago. I started out taking fourteen pills a day and now I'm down to two. If I'm lucky, at my next doctors appointment I'll be able to get down to one. It's taken a lot of time and trial to find a treatment plan that works for me, but I have. There are still rough days. There are still days when this illness kicks my ass. (I haven't gone into details about the physical effects of Lupus. I've got lots of those too. But since it's affecting my neurological system, I've also got an extra handful of the psychological symptoms. My doctors think the disease has been working it's evil magic on me for a very long time, but didn't show any diagnosable symptoms until I was in my 20s.) But even when I'm getting my ass kicked by this damned disease, I don't want to die.

I haven't wanted to die in a very long time. Not since someone listened to me. Not since I found out the name for what's wrong with me. Not since I was able to take back some measure of control. I cannot control this disease, but knowing that it's real, that's it's not a personal, moral failing (which is what I was also made to feel it was before) allows me to take some ownership, some responsbility. I cannot control this disease, but I can control how it makes me act. I cannot control the fact that it makes me feel like I'm physically dying, but I can control whether it makes me actual act to kill myself. I can control if I decide to value my life, pain and all.

And the thing is, I really do. I don't know when I started, but somehow it's occurred to me that I'm a pretty valuable person. Not just valuable, but so incredible strong and brave. You don't survive the interal struggles I have without being strong. You don't look at the future, knowing you have a disease that could decide to royally fuck you up at any moment, and say to yourself "Yeah, that's where I want to be" unless you're brave. It's not the kind of strength or bravery this world puts much value in, but it's real and it lasts. Everytime I get afraid, I stop myself. What, exactly, could be so bad? What could possible scare me? What could possibly hurt me so much I couldn't recover? I'm not a fool. I know there are lots of horrible things that could happen to me. And I don't want them to happen, of course. But if they did...I've spent most of my life fighting myself. No one knows the buttons to push like I do. And if I can survive myself jumping up and down on them for 20 years, I can pretty much handle anything.

Anyway, I realized I like being alive. As crappy as life can be sometimes, it's still way better than the alternative.

Labels: childhood trauma, depression, Lupus, suicide

I love my body.

It's taken me almost 32 years to be able to say that and really mean it, but dammit, I love my body.

I'm not supposed to, I think. I'm a fat girl. And I don't mean 'could stand to lose 10 pounds'. I mean fat. I wear a size 24/26 and I'm not really sure how much I weigh. But I really don't care, either. My body is tall (a gift from my 6'9 father), strong and healthy (aside from the Lupus, which I'd have regardles of weight). I can do whatever I want, whenever I want for the most part. If I want to run, I can run. If I want to dance, I can dance. I can swim and laugh and kiss and comfort friends and cry and be angry and change the world -- all in this fat body.

My whole life, people have been trying to tell me I needed to be smaller. I needed to lose weight, I needed to drop a few dress sizes. 'Oh, you'd be so pretty if you'd just lose 20 pounds.' No, actually, I'm pretty now. I'm smart, now. I'm funny, now. I'm a good friend, now. Losing 20 pounds or 40 pounds or 100 pounds isn't going to change any of those things. It's only going to put me in a smaller size jeans. And you know what? I just don't have the need to be smaller.

I look at models and actresses and you know what I think? They need to eat. They're too small. They're going to break. And I like looking at women, you know. I like the look of a full hip and thigh. I like a waist that I can't get my hands around. I like a woman I can really touch, that I don't have to be afraid of hurting. And some of these women who are held up as Perfect just look fragile to me.

All the women in my life have been big. My mother, my grandmothers, my aunts -- there's not a small one among them. And they are amazing women. My mother survived emotional and physical abuse by her father and managed to marry a man as far his opposite as possible, raise two pretty awesome children, have a really great life and not let the bastard get her down. Her mother is just inspiring, seriously. Her husband ran around on her, was abusive at a time when it was impossible for a woman to really do anything about that. And she kicked him out anyway. She kicked him out when she was seven months pregnant with her last child. And put herself through college, then raised five kids on her on. My aunt put herself through college, didn't get married, bought her own home by the time she was my age and was the head ICU nurse before she was 40. These are seriously impressive women, who all just happened to be fat.

And they all hated/hate their bodies. My whole life, I watched them diet compulsively. (Well, everyone except my maternal grandmother. She never could be bothered with it.) My mother was/is obsessed with her weight. My aunt was so obsessed with her weight that she refused to go to a doctor (even though she worked in an ICU unit!) and fricking died of an undiagnosed autoimmune disease at 42. A goddamned disease that could have been stopped with one damned pill a day. Because she was so ashamed of being fat.

They live/lived in their bodies, but they didn't love them. I've got my theories on why that is, but in the end it doesn't really matter. My aunt died. My mother obsessively diets. I don't and I won't.

I honestly love this body. It's the only one I've got and there's no point in not loving it. I take care of it, I eat right, I take my medication, I see my doctors regularly. If my doctors tell me I need to cut back on things, I'll listen. But at the moment, everything is doing fine.

I love my hips and my ass and my thighs and my gigantic feet. I love my hands and my belly and my boobs and my scarred knees. I love my toes and my Medusa-snake curly hair and my teeth and my ears and every little inch of skin. I love all my moles and freckles and my eyelashes that are too pale for my face. I love my glasses and my nose and my eyebrows that won't stay sculpted. I even love the parts of me the Lupus has damaged, because it's all me. This body has shaped my experiences, for better or worse, and to hate it would be to hate myself and I can't hate myself.

Labels: body acceptance, fat

So, I'm not dead. I just had surgery a few weeks ago. Minor thing, but you know, not really up to blogging. But I'm better now and so...

Random Stuff I'm reading:

To bleed or not to bleed, is that the question?Well, that's what they're asking over at Feministing. This is one of those issues that sorta makes me feel like a Bad Feminist . Then, I get over it. Frankly, if you want to stop your periods, go for it. If you want to have them, go for it. It's your body, after all. Isn't that one of the points of feminism? Women get to make decisions regarding what they will or will not do with their bodies? Even if those decisions turn out to be bad for them in the end? (And no, I don't think stopping your period will be bad for you in the end. I'm just saying, even if it should, it's still a decision each woman has the right to make for herself.) I'm particularly disturbed by the idea that not having your period makes you somehow less in touch with your body, your essential femininity. I'm sorry (no, actually, I'm not) but my ability to bleed or to carry a baby is not what makes me a woman. It's not where I seat my power as a human being and it's not what I want anyone using to define me. Admittedly, there are many people who will do so regardless of my wishes. I just don't see why other women would want to get on that particular train. That's the train that leads to 'it's natural for woman to have children, therefore, all women should have children, even those that don't want them, can't raise them and would damage them.' I've yet to see anyone make the agruement that, because men can naturally father children, it is every man's responsiblity to go out and father as many children as possible, regardless of his personal feelings/wants/needs/abilities. In fact, I regularly see men trying to get out of their responsibility to children they already have.

In the end, this is one of (many, I'm afraid) issues I simply disagree with The Feminist Handbook on. (You got one of those when you signed up, didn't you? Big, black book written on recycled paper in 100 percent biodegradable ink lovely crafted by homeless Tibetan orphans paid a sustainable wage and given room and board? Mine's got "I'm not a lesbian, but I hate men" on the inside cover. Or something.)* On one hand, it's just not that big an issue. Really, we've got so much more to worry about -- does it really matter if the woman sitting next to you at the pro-choice planning meeting is taking a pill to stop her bleeding or not? If all your choices are taken away, it's not going to matter anyway, is it? When sex ed is so screwed up that kids may not even understand WHY a woman menstruates, much less that there are ways to control it, is it really that important if Susie decides she prefers disposable pads to Lunapads? If we end up in the dark about how our bodies work, this whole thing is a moot point.

Although, I have to say, I can get behind the idea of Lunapads. It's not my thing, but I can understand and support it. Frankly, I've got too many medical issues already. My purse is full of meds and other medical stuff that I have to keep up with; I'm not game to add one more. But, you know, that's a personal choice. Which is the point, really.


* For the humor impaired -- that's sarcasm, 'k? There is no feminist handbook. There are lots of feminist out there, with lots of different ideas. We don't all agree on everything, which is what makes us so much fun! Disagreeing on an issue (or two or ten, really, depending on what they are) will not get you kicked out of the feminist club. Oh, and I don't hate men. Although, I am a part-time lesbian.** Go figure.
** For the seriously humor impaired -- I'm also a part-time straight girl. Full-time, I'm bisexual. Oh gods! We do exist! The shock, the horror, the please-get-over-yourself-already.