If Only It Were Just Blindness

So a friend sent me a message on facebook today. He told me he'd seen some special on PBS about this new technique that allows some blind people to see, at least on a minimal level. While I'm sure this friend meant well, as Gareth gets older, I worry less about his vision and more about the other medical conditions that he was born with. Why isn't everyone concerned about fixing those?

Many blind children also have either debilitating or potentially debilitating diseases that accompany their blindness. With Gareth, it's SOD. Missing a septum pallucidum isn't a big deal. Having an under-developed pituitary gland is. It puts him at higher risk for diseases like diabetes, could potentially stunt his reproductive health and will almost certainly affect his ability to grow normally. From what I understand, there could also be potential cognitive issues that arise if he doesn't receive treatment. Maybe I'm insensitive, but doesn't blindness pale in comparison to these other issues?

But ironically enough, blindness is the "visible" part of his disease. It's the part that everyone else can see when they meet Gareth. He still determinedly rocks his head back and forth. He still walks into table edges if you don't warn him in time. He stumbles over toys in front of him. Daycare workers, family members and your average Jane on the street can see these symptoms. And they think they can potentially relate to them as well. They think, "Gee. That would suck to live in the dark all the time," or "oh, the poor blind child. I bet he's gonna be another Stevie Wonder when he grows up. I'll give him free music lessons. To hell with his sighted sibling." And so they spend all their pity and condescension on fixing that.

But they don't see the cysts in his brain. They don't see his almost non-existent pituitary gland. They don't see him two years down the road when he's receiving hormone shots everyday of his life until he hits a potentially induced puberty. And frankly, next to those worries, I'm not so much worried about the fact that he can't see. That's normal for Gareth. As far as he's concerned, blindness is business as usual. Not that there won't be the occasional insensitive playground bully. Not that he won't face some discrimination. I do realize that it's going to be something he'll have to deal with. But being unhealthy isn't normal for anyone. When your body starts to rebel against what you think it ought to do, you're going to notice--regardless of whether you can see or not.

And who are we kidding? The diseases that accompany most children's blindness are what's going to cause their families the most worry financially as well. Luckily most of us are covered by some kind of state program or other. But we all know that given a sudden rise in income, or an improvement in functionality, our children could lose that coverage and then who's going to pay for that? I admit this keeps me up some nights.

But again, these are the parts of our children's conditions that people don't see. And so they don't send us news about stem-cell research regarding gland re-building, or fighting blood related or auto-immune disorders. We get access to that information through our service coordinators, doctors, etc. But for me at least, it sometimes gets irritating to have family members and friends send me stuff regarding only the blindness, wanting to fix my poor broken child who, if they really took a look, is actually a pretty normal kid overall, but who will also face some serious health challenges as he ages.

Lastly, I know these people mean well. But seriously, folks (and I'm talking more generally. Not to the people who read here. Most of you have been incredibly sensitive in real life), don't be afraid to ask me questions. Don't make assumptions.

Cross-posted.

Sex. You Know You Want It ;)

I can honestly say that there was a point in my life when I wasn't so sure I did. I was a good girl. I waited to have sex until I was married. I went into it completely blind. I had the basic mechanics figured out in my brain, but absolutely no nuance or idea about how my own body worked. My first time was awful. It hurt. I was scared. And when I asked for a break the next morning, I was guilted into giving in and having sex again. And it hurt. Again. And I was scared. Again. That set the pattern for my married sex life. He asked. I looked for excuses to avoid it. He guilted me. I gave in.

Thankfully, I finally discovered orgasms, and I learned to enjoy sex once I was guilted into it. But I can honestly say that there was only a brief period in my married sex life where I actually craved sex. And you guessed it, that was the period in which he wasn't that interested. And while we're at it, he also happened to most enjoy the sex positions that hurt me the most. Had I craved sex before I was married? Yep. You betcha. But it's funny what fear and guilt can do to a sex drive.

So when I left my ex, I really didn't expect sex to be something I'd want. I was petrified to have sex again. I was afraid of it being another control battle. Of not being able to say no without lots of pouting and accusations.

I was pleasantly surprised. It turns out, I did still have a sex drive. But what to do with it? I sure as hell wasn't going back to my ex. The thought of having sex with him still weirds me out (even though I admittedly still care for him in other ways). So for awhile, I just took matters into my own hands. And while we know this works, it's hardly ideal. But I also wasn't willing to go out and sleep with whoever. I had had such a bad experience with sex the first time around that I figured it was probably a bad idea to find some dude off the street and fuck him. Who knows what kind of psycho I might have ended up in bed with?

Fast forward to my current sexual partner (who wants to remain anonymous on the internets, so no names). Because of his wish for anonymity, I'm going to try to explain this situation without giving details about how/where we met. Suffice it to say we met in a safe social situation. I wasn't really looking for anyone at the time. So to hear him tell it, he had to work hard to get my attention. But he eventually succeeded. We started talking a lot, going out for lunch, watching movies together. And yet, I was still scared. I wanted sex, but not badly enough to have another bad experience. And I certainly didn't want to get into another committed relationship.

Did I mention we talked a lot? We did. And over the course of a few months, we talked about sex, relationships, relationships gone bad (turns out we'd both had one) and what we wanted from each other. It turns out neither of us wanted to settle down. In fact, both of us are fiercely terrified of it. He doesn't want to be in Idaho Falls forever, and I just don't want to feel tied down and owned like I did in my marriage. So we reached an agreement. No expectations. Every day we spent together would be a mutual choice. If the other one needed a break for any reason, we would know that it wasn't a comment on our adequacy. We would not involve my children.

And even still, jaded me wasn't quite ready to have sex. Even though my body was. Finally, slowly, I began to trust this guy. I knew he wasn't a permanent fixture, but I knew that for the time being, he was a sincere fixture. He wasn't going to be dishonest with me. He wasn't going to pressure me (cause he still hadn't up to this point). We were getting physical, but he was reading my signals and backing off when I wanted him to. Finally, I gave the go ahead. But not until I was ready. And you know what? It turns out that some guys will stop when you tell them to. But that's only happened a couple times ;-) Because guess what, I haven't wanted to stop. I actually enjoy sex even before I start now. I want it now. It's fun now.

So now that you know more about me than you EVER WANTED TO, let me get to my point. Marriage isn't the only way to express our sexuality. In some cases, it's not even the ideal way. Not all of us fit into the category of people who want nothing more out of life than to get married and settle down. Some of us value our independence. Some of us don't feel that a marriage certificate changes our decades long commitment. Some of us aren't interested in decades long commitments but are interested in enjoying partners for the moment and then moving on when one or the other partner's needs change, some of us may be okay with open relationships, and some of us may have different ideas about how our relationships will work. But as long as those ideas are fleshed out openly, honestly and entered into consensually, they're all viable.

And lastly, let me say this. I'm not expecting for this current relationship to end painlessly. I'm not in love with this guy. But I do care about him. He has become a very good friend. And when he goes, I'll be sad. But I know from experience now that I'll move on. That there will be other good guys and maybe eventually a good guy that I'll decide is worth keeping. In the mean time, I know now what I should be able to expect from a sexual relationship. Indeed, from a relationship period--respect and honesty.

The Real Issue Behind Global Warming

So let's talk about global warming. I live in one of the most conservative areas in the country. I get a lot of letters to the editor, some from scientists even, talking about what a scam or hoax global warming is. They point out, correctly as far as I can tell, that our planet has always gone through warming and cooling periods. And I agree with them. However they also go so far as to say that the extreme amounts of C02 that we're putting in the atmosphere aren't really contributing to the latest alarming finds in polar icecap melting, extreme climate conditions and rising natural disaster rates (and you know you've all met, hell maybe even been one of, those lovely people who are just sure these are signs of the times and that the end is nigh). And you know I'm not a scientist. I trust the scientific sources who have told me that we're doing some severe harm to our planet, but I admit that if presented with raw data, I wouldn't know what to do with them.

But to me, these scientists and lay people decrying global warming are missing the point. They are missing the point entirely. This planet will survive whatever we throw at it. We may not, and the polar bears may not, but the planet will. But even this is beside the point. The real point is that global warming is a humanitarian issue far more than it is a planet issue. Regardless of how our carbon footprints are affecting the planet, our blatant consumerism is affecting our ability to sustain ourselves on this planet. There are just too damn many of us.

"Wait! Wait!" say the traditional family values folks among us. "America's birthrate, hell the birthrate of quite a few developed nations is in decline! It's those heathen third world countries who are making too many humans!"

This is true. Third world countries do in general have a higher birth rate than developed countries. But I'll be damned if some woman and her seven children living on a dollar a day consume nearly as much as just me and my two kids living on nearly sixty times that a day. You can bet that in clothing, feeding and transporting my kids that I'm consuming way more than my share of the resources. In fact, if I'm honest with myself, I'm probably able to consume this many resources because this woman and her seven children are working on a plantation of some sort, or a brick molding pit or maybe even a clothing factory producing, harvesting or mining the everyday "necessities" that I feel so entitled too.

The reason we need to cut back on our consumption, the reason we need to downsize our lives, is because we are stepping on other people's backs to be here. We are maxing out our planet's ability to support our lifestyle. There are only so many arable acres, and every time a new subdivision goes in, we're limiting our ability to make that land agriculturally useful in the near future. Every time we slash and burn a section of rain forest to grow corn or soybeans, we're cutting out vital ecosystems that do their part to support local climates and maintain those areas' abilities to feed themselves. And every time a privileged First Worlder (myself included, although I made the decision to have kids before I was aware of this) makes the decision to have another child, we're depriving dozens more already living people of the real time stability needed to have even one third of the "necessities" that we take for granted.

So don't talk to me about the "science" that contradicts actual climate change. Tell me how it is you're looking yourself in the mirror knowing that everything you use today probably came off the back of someone working dawn til dusk and getting paid a minuscule wage just so you could have the latest in fashionable clothes, cars or even breakfast cereal.

(And just so we're clear, I'm the uber-hypocrite and actually don't spend a lot of time looking myself in the eye in the mirror, because I'm so ashamed of my apparent unwillingness to change my lifestyle)

More Parenting Anxiety

Don't know how many of you knew this, but I also blog here. But I blog there even less than I blog here :P But anyway, that's my most recent post over there.

BEFORE You Friend Me on Facebook

This is mainly for those of my LDS friends who find me on Facebook. Consider this my full disclosure.

I am apostate. I am an atheist. I am pretty liberal in my political views. I use lots of obscenities and blasphemies in my day to day language, and they come up from time to time in my status updates. I drink alcohol, coffee and tea (but rarely all of them at once ;-P). I watch rated R movies. I disagree with a lot that the LDS Church does, and from time to time, that will also make it into my status updates. I have left my husband. I work outside the home.

I operate on a basic premise as far as status updates and comments go. We are all entitled to our own opinion. I personally am not interested in antagonizing anyone. Thus if I see a post on your wall that I disagree with, I will simply shake my head to myself and let it lie. I expect the same courtesy. If you do choose to argue/disagree, please send me a personal message. While I'm not inclined to argue, I'm certainly not afraid to defend my position.

I am aware of the implications of my behavior from the LDS point of view. I accept full responsibility for my lost and fallen state. Let me assure you that I'm happy; I'm healthy; and I'm sane (heh. I realize this has always been debatable, even before I left the church). I am a human being, not a missionary opportunity.

Lastly, if you friend me, I'm sure I'll be thrilled. I enjoy hearing from the people I grew up with and spent time with. I like hearing about people's high moments and being there for them when they're having a rough time. I'll make no claims about whether I'm a good person or a bad person. All I'll claim is that I'm doing the best with what I've got. Be well, mes amis.

Why an Atheist had to Re-shape God(dess)

As you all know, I attend the Unitarian Universalist Church. Two of the women in our local congregation are leading a class called "Cakes for the Queen of Heaven", based on this curriculum. While very few readers new me as a child, those who did know that I was fascinated with ancient Greek, Roman, Norse and Egyptian (to name a few) mythologies. So even though I wasn't interested in finding another deity to worship, I was drawn to the group because I wanted to learn more about goddesses in particular.

The first couple of sessions I attended were a little more theist-centered than I was comfortable with. I almost decided not to keep going. But the women leading the discussions stressed to us that they wanted to make our group into its own little community where we could rely on each other. So I stuck out the first five sessions. I'm glad I did. I'm now eagerly attending the next six sessions.

The websites I linked to should give you an idea of what ground the sessions cover. What I want to go into here is how empowering it has been for me to re-create the god I don't believe in as female. When you're raised LDS (my god, that's two posts in a row in which I've dealt with Mormonism), you're taught that Adam and Eve were the first people on the planet and that they worshiped Jesus Christ and his Father. So the concept that other mythologies legitimately predated Christianity was a foreign one for most of us.

Mormon teachings also had the potential for there to be goddesses, but it was never fleshed out, and we were discouraged from searching out this (these) woman (women). We were told that our Heavenly Mother was too sacred, that God was protecting her from blasphemy by not revealing her to us. As I learned more about feminist theory, this idea began to rankle me. Who was God to tell his wife that she couldn't reveal herself to her children and interact with us in ways similar to him?

Mormonism was full of stories about men. It was a boys game. It revolved around a male savior sent by a male god to save men. Women were exalted for bearing more men. Or we were put on a pedestal and told that we were too special and busy with the kids to bother ourselves with any administrative duties (the Relief Society used to be under the sole control of the women called to lead it. Then the men decided they needed to oversee even that. *coughcontrolfreakscough*).

Learning about the history of goddess worship allowed me to rebuild my spiritual history. There were stories about female deities who loved their children, who interacted with them, who guided them. I now have stories I can draw from where women were the heroines. Where we existed for our own sake and not the ends of the patriarchy.

Perhaps the single most important thing this class did was help me let go of some of my remaining reticence about my personal space and ambition. I've always been pretty laid back. But I had taken that to an unhealthy level when I was a member of the church. I didn't know how to say, "no", or "I have the right to goals and ambition as much as you do," or "I'm glad you appreciate my physical appearance, but I'm much more than that." While I had realized these things in theory after leaving the church, having this history of strong women/deities to build off of finally enabled me to put these things into practice. I'm more assertive now and more ambitious.

So I'm still just as much a heathen atheist as I was before attending these discussions, but I'm a stronger woman for it.

Descending from My Pedestal

G and I were talking awhile back and discussing some of the issues we'd dealt with since leaving Mormonism. I don't go into my issues with Mormonism a lot here. This is largely because while things about the church piss me off, giving myself permission to leave it banished most of the cognitive dissonance that was making life so difficult right there toward the end of my stint.

That said, leaving the church and losing my belief in God necessitated a shift in my world view that was overwhelming at first. I had to reconstruct my reality in very fundamental ways. I had to do everything from change my conception of the cosmos to come to grips with the fact that people I'd taken as real historical figures never even existed. But I think the most difficult thing I struggled with after leaving the church was my overwhelming insignificance. This was what G and I were discussing particularly. We agreed to do blog posts on it. She's much more on the ball than I am :)

My loss of testimony happened the last couple semesters I was in school, so most of my "aha" moments happened as a result of things I was studying. The realization of my nothingness happened as a result of a "History and Philosophy of Science" class that I was taking my last semester. As we worked our way through each successive scientific discovery, I saw the need for a creator god becoming less and less. And while this is clichee I'm sure, our study of the cosmos was key in my realizing just how tiny, vulnerable and unimportant this planet--and as a result of that, myself-- was in the bigger expanse of the universe.

Growing up Mormon, I was taught that I was a daughter of deific parents and would someday, if I was righteous, be a goddess myself. I was told that I was special, that my generation would do magnificent things in the world. As a result, while I never really planned on being famous or anything like that, I still felt pressure to make my own particular mark on the world. The brand of Mormonism I was brought up in said that I would do this ideally through the influence I would have on my children. But the message was the same: You are a daughter of God. You should do great things.

When I left the church, I'd already made decisions that largely cut off the possibility of my making my own, kid-separate mark. I'd had children, hadn't gone to graduate school as I'd wanted, and I'd gotten a largely useless degree that didn't bring me a lot of financial freedom. It hit me at some point that I would probably never be that world famous philosopher. I'd never be a famous singer. I'd probably never make it out of the lower middle class. It was quite a blow to my admittedly large ego.

What was even worse was realizing that even if I did make some mark on this world, it would be transitory at best. I had an Ozymandias complex, I guess. Even if I wrote that great novel, came up with that thought changing philosophy, or even did a great job with my kids, eventually, it would be forgotten. Eventually all the people who remembered my stories would die. This caused me, and if I'm honest with my self still causes me, a lot of angst sometimes.

At my most fatalistic, I realize that if I ceased to exist, people would only be sad for as long as they were alive (and maybe not even that long) and then eventually, no one would care that I was gone. On those days, it's my stubborn, refuse-to-throw-in-the-towel idealism that keeps me getting up in the morning. But overall, the way I've dealt with this is to tighten my sphere of influence. I realized that the most important people in my life were not important to me because they were famous, but because they cared about me. I realized that if I lost any of them, it would be significant to me and their other loved ones, even though the rest of the world would never notice. And I realized that if these people were that important to me, chances were I was important to them too. So what if I never write the all-American novel (or even short story for that matter ;-)? If I've been a good friend, mother, teacher, lover, co-worker, whatever, to the people who share their lives with me, then it's enough. Because these people are absolutely vital in my eyes. If I lose any of them (and they are many) I would be honored to keep their stories alive. And even though I won't care once I'm actually dead, I'm honored to think that they'd be telling mine. Nothing is permanent in this world. And in general, I'm okay with that. 

Making Me Feel Better

We're raising the prices on our obits here at the paper I work for. It had been ten years since we'd done something like this, so I know it's about time. Nevertheless, it made me uncomfortable. I don't like the idea of profiting from others' misfortunes. Still, a few things have made feel better about the idea:

According to my manager (to whom I expressed my pinko-commie concerns), because of estate planning or life insurance policies, most people are better off at the time of their deaths than at any other time.

We're an independent paper. Sure we're a corporation. But we're not part of a corporate conglomerate. A local family and many of the employees own shares in our stock. However, we're also struggling as a result of the poor economy and the information shift to the internet and free media. Raising the prices on our obits (and charging for some other announcements we'd previously offered at no cost) will provide us with instant (even if not hugely significant) profit that will hopefully alleviate a little of the discomfort we're having.

Also, by being an independent paper, we're still able to raise our prices without charging as much as some of the bigger, conglomerate owned papers in the region. So printing an obituary in our paper still won't cost nearly as much as it does at most comparable papers.

It's the second and third one that have my gears turning, as well as this article from TIME magazine (and some stuff I've been learning about how our international finance system influences our ability to create wealth, but that's for another post). What I'm coming to realize is that until we develop a better compensation system, we're going to have to learn to prioritize and be willing to pay a little more for the things that are important to us (i.e. keeping papers, grocers, builders, producers etc. local) on the bet that doing this will eventually make these things cost us less in the long run.

I'm far from living up to this standard in every aspect of my life. Finances are always tight in my neck of the woods, but certainly not as tight as some. But since I've been on my own and have been allowed to prioritize my money my way, I've realized that if I'm careful, I'm able to buy things that make me feel responsible environmentally/socially without breaking my budget. Do they cost me a little more? Yes. But I'm fortunate enough for now to be able to handle it and willing to make what small sacrifices (and in my case they have been small) I have to do this.

Anyway, back to our paper. I have my gripes about my workplace. I think everyone does. Is it a business? Absolutely. Is it's goal to make a profit? Absolutely. But one thing I'm glad of is that we're still independent. The paper claims to and really does care about the community it serves. It functions in and depends on this community. So while I'm hesitant to charge more for what I feel should be a public service (in spite of my gripes about obits in general), I also feel that if our community values us as much as we're still able to value them ("we" being the paper, in this case) then hopefully they'll be willing to pay a little extra for our services knowing that we're still trying to treat them better than other places would.

Woman

I've been chasing something around in my head lately that I'm having a hard time articulating. I like to consider myself pretty open to gender bending, whether I indulge in it overtly myself or not, I'm not the least bit bothered by trans-women/men, effeminate men or butch women. And yet, I identify very strongly as a woman. I have several very good women friends and a core of close women friends that I consider closer than my family in many respects. I enjoy spending time with these women and laughing or crying over our shared experience as women in our communities, families and society at large.

Even as I say this, I realize that I don't really even know how to define the word woman for myself. I'm certainly not the type of woman my mother and sister are. I've always leaned more toward classic/liberal arts education and before leaving Mormonism, had a hard time relating to other women because of this. I've always been more career oriented and reluctant around babies, another characteristic that made it difficult for me to relate to most women in the church. For the last couple years of my stint in Mormonism, most of my mentors were men, and I related better to the husbands (with a few exceptions) than the wives in my circle of married friends.

Now that I've left the church, I've found more like-minded women and formed bonds that have surprised me with their strength. There's something very fulfilling for me to sit and visit with women in my mother's or even grandmother's generation--as if we share a common heritage or culture all our own. My core female friends are some of the most important people in my life. I relate to them and rely on them and support them in their own struggles on many different levels.

I suppose what I'm trying to say is that in theory at least, I don't consider myself to be a gender essentialist. I do think that gender is more fluid than we acknowledge in our society. So it confuses me that so much of my identity is wrapped up in being a woman--not androgynous, not lesbian, not butch, not feminine--but a woman. It's just that my views about gender are so flexible that I have a hard time defining that in any concrete terms. I think of myself as a woman, but I realize that I can't under any circumstances generalize what it means to be a woman from my own experience. So I'm wondering why that label is so important to my identity and why it brings me so much fulfillment.

Anyway, I'm not sure that was as clear as I would have liked it to be. Any thoughts anyone has on the matter would be welcome. How do you define the two genders? How do you see yourself on the spectrum?How do you relate to others of your "assigned" gender? How much of gender bending is perhaps anomalous (by anomalous I mean outside "normal" gender identification but acceptable nonetheless, clear as mud)? How much of gender identity is socially fabricated and how much is biological?

To My Children

I know that I can be somewhat cynical where my children are concerned. And not towards them, so much as to my own emotional ability to raise them and be fair to them. So let me make a few things clear, both to remind myself that I'm not entirely lost as a parent and to go to a place I don't often go here.

My children fascinate me. I've come to realize this more often in the past couple of months. I think I'd forgotten it for awhile. While I positively loathe pregnancy, I remember being fascinated nonetheless with the concept that I was actually bringing a new individual to life. I remember the anticipation of meeting this person and seeing who he would be (because yes, I totally wanted to know what I was having before I actually had it ;-).

My children continue to fascinate me. They're so small and yet so complete. They have opinions and ideas that are entirely their own, even though Alistiar and I and their other care providers have striven to influence them with ours. And while they have this definite individuality, they are also clearly a product of the two of us and our families. Watching these tensions develop into another person is so intriguing. I get to know them more and more everyday and yet they continue to change in small ways everyday.

I suppose my fascination with their individuality is what informs my parenting (what little of it I actually do). I'm not so much interested in shaping my children as I am in meeting them. I certainly try to make sure they understand important basic concepts, such as "torturing one's little brother (or anyone for that matter) is wrong", "respecting others is important if we want to be respected", "other people see the world differently and that's okay", etc. But in general, I like seeing how they react to problems, I like seeing them interact with others and I like sharing parts of myself with them. I admit it's gratifying when they express interest in the things I want to share with them, but I also admit it's fun to watch them develop their own tastes.

I suppose what I'm saying is that I love my children, fiercely. It's been good to remember this. Indeed, if I'm honest with myself, it's been good to discover this. Theron and Gareth, if you ever have the chance to read this, go in peace, be well, and know that every word of it was written in honesty.