Twinkle Little Star

In My Dream World...

Before I go off into La La Land on the intended topic, I'll give a quick D update for those of you who ask about it.

D went back into the hospital on Friday for a surgery on the incision site of the old pump. He only went approximately 5-7 days infection free, and then developed another infection mid week last week. There has been something mysterious in the wound that no one has been able to figure out. A hard something. First they thought it was scar tissue, then they found out that it was this meshy substance that they place around the pump and stitch the pump down with to keep it from moving. When they removed the pump, they, ahem, forgot to remove this stuff. So it has been causing problems (and infection! and has not promoted healing! Go figure!) and had to be removed. So the surgery was to clean all that stuff out.

The good news is that they were able to cut out the bad parts of the skin around this incision and just stretch the skin over and close the wound. So, we have hull integrity again. This is a very important step. Pathologies of the meshy intruders came back positive for MRSA and strep. Next is more antibiotics. So Vancomyecin for the next week or two and time for the wound to heal, and then if all goes well, the next step will be to get the pump replaced. (And no, the doctor who made all the mistakes in the first place will not be replacing it. D is done with her and has moved to a new pain management doctor.)

Also, D's dad and I, who have been suffering from minor but annoying illnesses for the past three months in our throats and sinuses are looking into getting on Mupirocim, an antibiotic to treat MRSA colonizations in the nose and throat via (ick!) a nose spray or ointment that you put in your nose. I think his and my respective doctors have been a little bit disinterested in our problems by not even offering a culture when we tell them that we are caregivers for an MRSA patient. All we are doing is passing it around to each other and although not life threatening for us, it certainly doesn't make it any easier for D to heal and it is sometimes life threatening for him. So, I am hoping that while D is on Vanco and with a closed wound, this would be a really great time for us all to get treated at once. I might even see about the kids and the cat...although I don't look forward to being the one who administers nose spray to them. (Ick again).

Oh, and in another good update, Naim has gone for two days with no accidents and has taken to going to the bathroom without being forced asked. Yippee yea! I think something clicked and he's turned a corner! I'll, um, hold off on my Aaron potty training report at this time.

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Okay, now for my living in dreamland post.

As you who read this blog regularly know, D and I don't have the best living arrangement. I don't like to complain too much, because compared to a lot of disabled people (and people people) we have nice, safe places to live. My house is not huge, but for our area is a bit upscale. D's apartment is a standard apartment in a nice complex with stupid high rent and a bathroom he can barely use. And then we spend our days running up and down the quarter mile in between us to get things done and see each other.

I won't rehash all of my issues with living in my father's house, which will always be my father's (or after his death, my sister's house) and never mine. For him, it is an investment. It has appreciated nicely. Very nicely. (I should get a finders fee for picking this neighborhood, but I'll never get credit for that.) Anyway, it is disconcerting to me that he often talks about how much he would make if he sold it. I get that it is more hypothetical "wow! look at how much the house has appreciated!" talk, but it is my home, my children's home and I would like it to be a home with 'soul' for lack of a better word, a home that develops roots and a strong foundation of stability for my kids (and me) but it is hard to feel like that when you are living in someone else's real estate investment.

I think that it could be okay and even great to live intergenerationally, but everyone has to be at least somewhat committed to the notion of family and sharing and working cooperatively and respecting each other. Sometimes I think we could do this. I have this plan to come up with ways to get my dad more on board with the fact that when he is here, he is part of the family. This isn't just his summer boarding house where he sleeps and eats and then goes out dancing or to "go have two beers." He impact my life and the life of the kids. He can either decide to be a positive, loving, respectful part of it or not. It is yet to be seen whether we can work that out. Sometimes I remember feeling more connected to my ex-boyfriend's mom's house that I stayed in for a summer or even D's family's house than this one. But sometimes I really want to make it work here.

D and I have considerable challenges when we consider living together or buying our own place again. We have two disabled people who need housing accommodations that don't correlate to low-cost housing. Neither of us can live in the country or in a much smaller town. He needs to be close to comprehensive medical care and I need to be close to public transportation and services I can purchase (grocery delivery) or get to by transit.

In many metropolitan areas that are big enough for us to have our needs met, housing and lot costs are extremely high. So what most families without a lot of means do to find housing is to rent apartments (which semi works for us, but we still have a space and accessibility problem there.) Or people buy row houses or condos. I would be okay in a row house or condo, but D could not live in one. In our area, the lower cost houses are typically three levels that sit on very small lots. Garage and maybe a bonus room or den on the bottom floor, kitchen and living room on the middle floor, and bedrooms on the top floor. There are very few affordable ranch style houses available around here. The lots are too big for people to afford.

Also, and this is hard for people to understand, D needs some amount of square footage. In an average house, the doors are only 28 inches wide, sometimes smaller in the bathroom or closets. D needs at least 32 inches. The threshold of the house really can't be more than a few feet off the ground before you would have to make a ramp so long it would wrap itself into the street. Also, in between things, like kitchen counters and bathroom sinks and such, has to have space to actually get around in. In most bathrooms, if D can get in at all, he cannot reach all the facilities. Same for the kitchen. He might be able to reach the kitchen, but then not the fridge or the sink or what not. And oh! how fun it is (just ask my dad) to cringe as he tries to turn tight corners with his 500 pound wheelchair banging into the woodwork and peeling holes in the drywall. Then there is storage. Everything he needs frequently needs to be placed about 3 to 5 feet high. The above kitchen cabinets are worthless for him, as is the bottom shelf. So space isn't really a luxury, it is a necessity. And that is really hard to find and be affordable. Sometimes even if you find a house with the bare bones of accessibility (like his parent's house for example, a two story but with some bedrooms and bathroom and kitchen and living room on the main level), the amount of remodeling you would have to do to make it really livable for D is quite expensive.

One thing that  is probably affecting D's health more than we know is that he doesn't have a shower he can use in his apartment. He has not taken a shower really in years. People think that apartment landlords have to provide for these things and, um, no. Little stuff they will do (with a fight) but they don't have to install roll-in showers or do big renovations. They only have to allow you to do them at your own expense and you have to change it back once you leave at your expense if they demand it, so most disabled people don't bother with it and just deal.

So D and I are always swishing around silly housing ideas in our head. We know we have it good, compared to those thousands of disabled people in nursing homes or homeless or on 10 year waiting lists for section 8. But we are paying for two households now on not very much money. Paying double rent and utilities is just kind of wasteful.  D's father is doing a lot of attendant work that I could easily do if I lived there, but I can't  leave the kids at night or drag them with me easily. The kids don't know anything other than having two households and going to 'daddy's house' but they do miss him on days we can't get over there and sometimes they don't want to leave when I have to go. D would get more time to spend with them, and I would get more time alone. D could watch them and I could be back up but still do my own thing in the house.

We are really liking our neighborhood (the one that I handpicked!), it is suburban-y, yes, but for convenience purposes, it can't really be beat. D's parents live less than a mile away. We have grocery stores, church, pharmacy, my gym, etc. within walking distance. We have the light rail station within walking distance and also two bus lines. The light rail goes into our little suburban town with the library, bank, parks, little town shops etc. Take the light rail the other direction and you hit the children's museum, zoo, and downtown Portland with all that downtown Portland offers. Museums, orchestra, ballet, theatre, etc. We have the ocean and ski resorts about an hour and a half away. (We don't peruse these much, but the kids might when they get older. The kids and I get to the ocean at least a few times a year.)

The climate here is good for both of us. It does rain, but it rarely snows. It isn't too hot in the summer for D, who doesn't sweat and gets dangerously overheated in hot weather. It is rarely icy so we are not stuck inside. (Wheelchairs and snow don't mix. Neither do white canes and vision impairments. Makes it a f**ing bitch to find the other sidewalk across the street.) It is also a quite liberal city politically, so there is a lot of environmental programs going on (i.e. all of the buses are hybrids), and alternative lifestyles are pretty accepted here.

All this is to say that the location is great for us, just the actual housing situation isn't.

So, we've played around with this idea for 5 years now. An idea that is pretty far out there and I can't even begin to think of how we would make it a reality. But I took the first step today. To what end? Probably none. But whatever, you might as well try rather than throw up your hands and quit before bothering. (And you know who inspired me? Ms. Baggage. A woman who is, in some ways, in similar circumstances to me and just bought her first house today. Go Baggage!)

Okay, so here is the deal: Between my church and the train station, along the train tracks is a strip of land. Big enough to put a house on but probably too small for a big development to come in. And besides, the train...the train that comes every 15 minutes from 5am to 1am every day...is like RIGHT THERE. (Which is why it is so nice sometimes to be hearing impaired.) So we hypothesized that A) the public transit utility probably owns this land; and B) it probably isn't worth a whole lot.

And, then, many years ago, I read an article in the Oregonian about a triangular shaped block located downtown, right by the light rail tracks and owned by public transit was sold to a developer who used it to build a posh high rise for....ready?....$1. Downtown land! That's like, located downtown. In Portland. Downtown Portland. Let me put that into perspective for you. A 500 sq.ft. studio apartment on the bottom floor in this 8 storey building costs a half a mil. On the top floor? A two bedroom 1,900 square footer? 1.3 million dollars.

Now when I told my dad this a long time ago, his immediate response was, "Well, they aren't going to give land to YOU for a dollar!"  And he is probably right. They probably got some kind of deal out of it. Some corporate trade that I don't understand or some kind of tax write-off or something. But, anyway, it gave me a glimmer of an idea at the time that TriMet sometimes has the opportunity to get rid of land for cheap. Who the hell knows, maybe this little annoying strip of land over here is something they don't give a shit about.

So, my first step that I finally did was to find out who the hell owns this land. And as I suspected, TriMet does. And I also found out that it is unincorporated, which I don't know exactly what that means, but I think it means that it isn't zoned as really anything or something. Much, much more research needs to happen in that regard.

So, step one in this far fetched parallel universe is to acquire the land for very, very little money. An amount that we could pay outright. Step two (probably the easier step, because it is more conventional in a way) would be to build a modular home on it. That would be accessible. And we would either mortgage that and/or look into fund raising or foundation grants or special disability programs (or get Ty Pennington to build us a house from scratch while I admire his cute little bod???)

I know, I know. Trailer trash. A modular home. But have you seen them lately? They are kind of like pretty damned nice! (just a "for example") And are spacious! And safe! And look like houses! And they are considerably (or so I am told) cheaper that a real house. And, almost all of them are basically accessible, and some are being made that have universal design features and we could have the roll-in shower and all that put in and not have to retrofit, which costs considerably more money.

And then we would move in, the four of us. Just the four of us. And my dad could come visit if he wants and stay in the guest room of MY HOUSE. And we would live happilyeveraftertheend.

Uh huh.

From our little idea to actual reality has about 463,264 million obstacles and what ifs and who the hell knows if that's even possibles. There is zoning and neighborhood associations and codes and well, a lot of people just laughing us off and saying "Fuck, no" to us and mortgage lending and D's health and my over commitment problems that would make a project like this not really ever happen until my kids are off and having my grandchildren anyway.

But...

What if?

What if I just commit to doing one step? The next step. That is all I commit to. I just make the one phone call. And if it seems worth going on then I make the next phone call, and the next. And if the road blocks get to be too much or if the reality that I'm out of my ever-loving mind comes to fruition then I quit? I won't be any worse off than I am right now. And I will probably have learned something about housing that might help me later on when I have my NEXT BIG IDEA. So it can't hurt, right?

So, I made the first phone call (email actually). And I got an answer that leads me to the next. Which is, what is that land worth, anyway? And that is all I'm going to commit to at this point. I'm going to research what that land is worth.

Preschool, homeschool, etc. (Next time)

Thank you all for your good wishes, candles, and karma. So far D is "stable" and full of bacteria of all sorts. And varying degrees of coherent and loopy. I actually told him today to take a few deep breaths and think about what he wanted to say and stop going all Britney Spears on me. (tangent: I was never a Britney fan, but her story lately saddens me and it has crossed over into the disability rights realm. Don't know who has her best interests at heart, but not really understanding why a guardian ad litem has not been assigned to her. Anyway, I actually find myself compassionately pulling for her these days.) But, I don't want to talk about Britney, or D, right now.

But here is a funny dad story. A couple of days ago when D went in the hospital, I decided that I was not going to go over to his apartment in the cold and feed the cat every day this time, so I brought him over here. And I set up his litter box, and his food and water, and his little bed. I put a can of his food in the fridge. The kids noticed him right away, the dog noticed him right away, and they even had a few minor altercations. He's lived here before, so he just walked around like he owned the place. And it took my dad over two days to realize he was here. I would sit there trying not to laugh while Kai would mosey accross the living room while my dad was watching TV, and he wouldn't  notice him. And then today, finally, my dad says "There's a cat in the house!" as if a stray cat just wandered in off the street. He didn't even recognize him at first. (He has seen him-even lived with him for weeks on end before.) That's Kai, dad. And the best thing is, he can hardly complain about it when he was not bothered enough to even notice him for over two days. But don't want to talk about my dad right now, either.

Okay, there is a post on preschool/homeschool coming...it was what I was going to write here. But I am catching Aaron's cold so I think I need to wait on that and get some rest.

The Post About the Menz

aka The post that will probably get me into a lot of trouble.

My sister and I were talking the other day about how she still gets (and I used to get) all of the questions about WHY doesn't she have children? I mean, its not like its the law that every woman should want to have children, right?

But this made me think of a question I still get, especially since having children and the lead up to children. "Why aren't you married?" Or, "When are you going to get married?" Or "Why don't you want to get married?" Just today I had lunch with J, who is in his late 40s and in luuuuv and engaged to get married, despite the Pacific Ocean that separates him and his fiance. I am very happy for him and I really enjoyed spending time with him today. But then the subject of my state of marriage came up and I did one of my tactless blurt outs:

"Men are 90% useless when it comes to relationships."

Yeah. I don't have issues.

But I kinda think I really don't. This is an academic issue for me and I'd like to qualify this statement. First of all, to prevent any confusion, D and I really do have a BIG insurance issue standing in our way. So marriage to him is beside the point. However, and I love D and he is family and I've said this before, I don't know that I'd marry him anyway because I just simply don't want to be married. Our relationship works on many levels, much better than some married couples I'd say. But one of the reasons it works is because we have so many mitigating issues surrounding disability and how we have to live to meet both our needs that it overrides some other big issues. Just for a really simplistic example: D and I don't fight about who does the dishes, who diapers the kids, who makes dinner and who vacuums because he can't do it anyway. It's irrelevant.

I'd like to think that if he could, he would be completely enlightened and he would see us as 100% equal partners and do all this stuff without question. But chances are good that he wouldn't, at least initially. The way he was raised, using his brothers as examples (which is not totally fair, but that's the little I have to go by) they are entrenched in patriarchal thinking. Male privilege. To D's credit, I think if anything, disability has enlightened him to what it feels like to be treated as subhuman, and has opened his mind to learning about the issues women face. So, it is a bit of a catch-22. If he wasn't disabled, he might be a bit of a chauvinist and not treat the partnership equally. But since he is disabled, he understands these issues that are important to me, but many times can't demonstrate it in concrete ways. But one of the things I most love about D is that he doesn't base his ego on stupid testosterone induced male pride and get all hung up about it.

But back to the usefulness of men. What I meant to say, and not that this is much better, but anyway...90% of men are useless when it comes to relationships with women. And of the 90%, there is certainly a continuum of usefulness. Many men of my generation might be in the top 20% of usefulness, while men of the older generation are perhaps lower on the scale, just based on different generational views and upbringing regarding women. So, what I am actually saying, is of the bell curve of men's usefullness in a relationship, my criteria to even bother with trying is only the top 10%. And by top 10%, I don't mean the top ten in traditional ways, like best looks, most money, most prestigious career, whatever. I mean in their usefulness as an equal partner, respectful, loving husband, kind and generous, conscientious, responsible, mature, honest, courageous, etc. Those kind of things.

Okay. I am FAAAAAR from perfect, but I always said that any guy I would marry had to have his shit together at least as much as I do in these areas. And it always seems to me that that only leaves the top 10%. Arrogant, much? I know, I know. But what I'm getting at here is that I don't consider myself to be in the top 10% of women in these areas. I'm probably just average. What I'm getting at is the discrepency between men and women that I don't want to put up with.

I know. I'm digging myself into a deep pit.

But come, come join me. Let me throw you a shovel. I will also qualify this to say that I have many male friends who I quite enjoy and some who I love dearly. I see their humanity and all their good points and things they have to offer. Besides D, of course, I love his dad, despite our differences. I love my first boyfriend, Kory and always will. I love Nik. I love J. But to enter into a lifelong commitment and equal partnership? There are very few guys out there who could pull off the kind of partnership I want. A patriarchy free one, as much as possible at least. Very few men are up to snuff to  make it worth my time and effort. I know that sounds just like the "I don't think all blacks are bad, I have a friend who is black." line. I do understand that it is an unfair statement to generalize all men in this way. And I don't feel like I am doing that so much as observing a social trend that affects both men and women.

In fact, J must be my special special. I must love J so much because I held my tongue and even coughed up a "well, there might be a grain of truth" to his example of that asshat quack John Gray and his stupid Men are from Mars, Women are from Venus drivel. Did you know he isn't even really a doctor? His stuff is misogynistic crap that basically gives men a "biological" excuse to be pigs. Here, for your entertainment, some great John Gray quotes:

"It's such a big deal, 'Well, I didn't get my 20 minutes of clitoral stimulation, so how can you think about penetrating me?' This is all feminist stuff that came in, and women are brainwashed with that. They should have it. I'm not against that. Women should have great sex. It will make better marriages for men."

"Does one spouse owe the other sex? The man goes out and risks his life for this woman. The man works hard for his family. What does she do for him? She has sex for him whenever he wants. That's what sex was. Sex was always for the man. What's this sex for the woman thing?...It's takes 30 minutes [for women] to have a real sexual experience. How do you have sex for 30 minutes every day in a busy life with kids? You don't. But you can do two minutes whenever the man wants."

(From an interview with Yahoo! Internet Life Magazine.)

No wonder his wife left him. My point is that I don't think the trend of men being worthless in relationships is in anyway inherent to the fact that they are men. I don't think it is in their DNA, I don't think men are useless in relationships in any way because they are inferior to females. I recognize that there may be some biological differences between men and women, but more and more research supports that the differences are minor. We are not from different planets, so much as we perhaps just have a different dialect when speaking the same language.

I think that men tend to be useless in relationships because for thousands of years, they had no expectations to live up to. Or very few in regards to accountability to their relationships with women. Women were property and thus could be treated as such. How men treated their property was based entirely on his prerogative, not on her rights or her humanity. Has this gotten better? Absolutely. But thousands of years of patriarchy does not go away overnight. Women have been forced to set their expectations low and men have have been entitled to basically do as they pleased. It is so ingrained into our society that we don't even see it without a trained eye.

So, I call myself a feminist, which for the record, doesn't mean that I feel women are inherently better than men, nor should women rule the earth. Shannon does a remarkable job illustrating my view of feminism in this post. It is about recognizing the humanity of everyone equally while understanding that we are not identical with identical needs. But this won't happen unless men take responsibility for their actions and women expect the respect they deserve.

Here is where people are going to write to me and tell me how mentally screwed I am, or (and I always love these, cuz they prove my point) where someone inevitably comments that I just need a 'good fuckin'. Because of course, when a woman has an opinion that deviates from her requisite dire need of a man, she must just need to get laid.

But here we go: Nothing illustrated the patriarchy and its cruelty to me more than after I was raped. I haven't talked about this much because I really don't want the guy to find me, nor do I want to open up myself to the criticism that always follows rape victims, but here is the story in a very abridged (cuz gawd, I'm sick of this story) and somewhat disguised version:

College. Never heard of the term date or acquaintance rape before. Very, very young. Got a university sponsored ride from a university employed driver (along with several other students) to the airport, two hours away. Talked to the driver the whole trip, a fellow student several years older than me. Nice guy. Perfect gentleman. Went above and beyond the call of duty making sure I got to my flight on time and helped with my bags.

Two months later. At a BYOB frat party with a friend. She wants to make a booze run, we are underage. She asks me if I know anyone at the party who can do it for us. I (barely) know the driver guy. He takes us for a booze run. My friend drinks, leaves with another guy. I don't drink, or drink very little. I'm not drunk. Getting late, driver guy asks to drive me home. Okay. Drives me to his dorm. I don't realize this (cuz I can't see) till we are out of the car and going up the steps. I realize it, I still go in with him. Sit around talking with a bunch of people in this guy's room. One by one, other guys and girls leave. We are left alone. We kiss. I (SUDDENLY!!, cuz I'm dumb) realize that he expects to have sex. I get up and say I don't want to have sex and head for the door. He apologizes. Sweetly. Convinces me that I shouldn't walk home at 4am (the danger!) and he is too tired to drive me home. He convinces me to stay to "just sleep." I stay. I fall asleep. I think I slept about 15 or 20 minutes and am awoken to him pinning me down and the rest I will spare you the details of.

So, my story is typical. You've all heard this type of thing before. We all know a girl who this happened to, right? And we all can see, with our aged wisdom and experience, the 300 things I did wrong to get myself in that situation. And I was naive. But here is the deal: The thing I did wrong, the thing that put me in the most danger, was in believing that my personhood would be respected. I believed, up until the very last second when I was physically overpowered, that I had complete control and autonomy and SAY in what happened to me and what I agreed and did not agree would happen to my body. Obviously, I was mistaken.

What was worse than that night was the reaction I got afterword from the few people I told, both men and women. It ranged anywhere from "how slutty of you" to "well, that's too bad, but what were you thinking???" Basically, the general attitude from everyone was, "well what did you expect when you voluntarily went and stayed in his room?"

Well, wild as this might sound, I expected to be respected. I expected that I would have a say in consenting or not consenting to any and everything that went on that night. When I thought about prosecuting, the main thing I heard about was how I was going to ruin HIS life. Basically, expectations were extremely high for me to monitor my behavior, but nonexistent for him to monitor his. I was supposed to respect my impact on his life but he was not required to respect his impact on mine. Thousands of years of entitlement and low expectations. This had nothing to do with him being from Mars. This was about misogyny and the lack of percieved humanity that I had as a woman. (BTW, I think it was Nik, five years later, who was the first to call bullshit on that line of reasoning and name it 'date rape'. Thats only one of many reasons he rocks.)

Now I do realize that this is an extreme example and most guys are not out there raping people. But even those who won't go so far as rape still carry these attitudes. It is everywhere. Men (and some women) seem to be very confused about rape. This is the litmus test:

At any time, at any moment in any situation, and no matter how she got there, a woman should be able to voluntarily get up and walk out of the room. Even if she consented to sexual actions, even THE sexual action and even if they are in the middle of doing THE sexual action. I'll even spot the guy a ten second reaction time. But at any moment, no matter what she was wearing or what she said or did, she should be able to stop what is happening and walk out of the situation. Now, I'm not saying the decisions she made that got her in the situation were good ones or wise ones or even nice ones, and the guy is free to end the relationship with her if he doesn't like her decisions. However, he is not free to rape her. End of story. Is this so damned hard to figure out?

So, take Kobe Bryan. His situation happened almost 15 years after mine. And I use that situation because it was similar to mine. The girl kinda liked him, she voluntarily went into his room, she might have consented to some sexual acts, and then she did not consent to others and she wanted to stop and to leave and was not allowed. Tons of men, men who I know were not bad men, men who would never rape anyone, said things like, "Well, she should have never gone into his room." Or, "she confused him by consenting to this and not to that." Or, "how was he supposed to stop? Guys get to a point where they can't stop." Or, " She is going to ruin his career." Her identity was leaked numerous times by the press. She received death threats. She was made into a villain. It was "blame the victim" at its worst.

Rape situations sometimes really illustrate how far we haven't come as a society in our ability to see woman as humans rather than objects and property. The standards for men's behavior are so low, and women have to sacrifice SO much sometimes to have a relationship with a man, it is very hard to find truly equal partnerships.

Most of the time, the low standards are much more benign than rape, of course. It is the guy who comes home from work and sits on his ass while the wife makes dinner, cleans up, gives the kid a bath and puts 'em to bed. Or the guy, like the uncles I grew up with, who grouch, "Woman! Get me a beer!" Or it is the husband who agrees to fix the broken stairs a month before the child's birthday party and then doesn't. Suddenly deciding to get his power tools out DURING the party. (True story.) Or another true story: Mom has been working on potty training junior. Asks dad to put off re-tiling the only bathroom for a week until the kid is back in daycare. And he up and rips the bathroom apart while the kid is home all day and has his first day of big boy underpants. Or (another true story, I read too many blogs.) the husband who spends all of his non-working hours playing Second Life on his computer having cyber sex while lying about it to his wife. He completely does not understand why spending his time having virtual sex with a real woman online instead of spending time with his family might be upsetting to his wife. Or the guy who skips his autistic kid's long awaited referral with a specialist to go to a Ferrari convention. Or it is the husbands who think that they work all day while the wife doesn't work. Or gets upset if the wife makes more than him. Or (in phony Ph.D and divorcee John Gray's case) the husband expects the wife to drop everything to give him a quickie but never seems to have time to return the favor. Or calling the type of intimacy that delivers the orgasm for women "foreplay"--an optional precursor to the MAIN EVENT! --the part where the man gets his. I hear about this shit every day and I never understand why women put up with it. Is it just because we have such low standards? Is it the necessity of economics? The exhaustion of raising children alone? How do we get out of the cycle?

There are just a thousand little ways that men don't have to measure up. It is deeply embedded in our society. It is the invisible backpack of entitlement that men carry and women almost don't recognize. And to some extent, men are victims of it as well. I think in the majority of cases, it is entirely unintentional on men's parts. It is for them probably like being a well-intentioned white person who doesn't see their own privilege and sees themselves as being colorblind. Men are often raised this way. It is in every aspect of our culture. Just last week I was lazily folding laundry while watching General Hospital. A successful business woman gives up her career and surrenders to the seduction of a man who is a mob boss (and a 'good guy'!) and can't guarantee her safety, yet won't give up his lifestyle so that his girlfriend and children won't be killed. I know its a soap, but this is still acceptable as romance today? They even had the protest-protest-protest-surrender kiss scene. Un-fucking-believable. Its everywhere.

I also recognize that women aren't perfect and often contribute to this by playing right into it or have a "if you can't beat 'em, join 'em attitude". My MIL's generation is full of master manipulators. And I think some women have learned this as a survival technique. If you can't gain power by money or brute strength or position in society, then you manipulate to get what you want. Women are taught from birth how to do this. How to use their bodies, how to trick men into getting what they want. Venus and Mars are all about manipulation. Oprah and Cosmo have articles about how to get your man to do what you want them to do by playing to their ego or sexual desires. Girls are told that the toys they should want at Christmas time are play kitchens and dolls and ironing boards and princess costumes and dolls heads to put make up on. Boys get heavy machinery and superheroes and footballs and toy swords and violent action figures. Toys that focus on power and strength. We are still, in 2007, taught from birth that men are powerful and do important things and women are here to be pretty and clean up after the men and their children.

Although we can't totally reject the patriarchal notions that have been driven into our brains from birth, like we can't really be totally cleansed of the racism we were raised with, we can recognize it for what it is. And here is where the great guys come from. They are out there. They are the men who recognize what is going on and conscientiously work to make sure that they are acting in ways that are not contributing to it. They recognize the humanity and worth of women and don't play stupid Mars/Venus games or act entitled to sex or beauty or a hot dinner waiting or a clean house. They understand the difference between making love and just getting laid. And they understand that the patriarchal bullshit is ingrained in them and will never really go away but they will do their best to try and minimize its impact on their lives and the lives of the women they love. They are out there. I know some of them. They are the 10% that are not useless.

And unfortunately for the most part, they are married. I think they all got scooped up by the woman who were self confident and expected to be treated with respect while girls like me were guilt-tripping ourselves with our misplaced culpability in our own rapes or were being self-conscious about our blindness or our fat or our zits or whatever. I admit it, I was too busy being a victim of the patriarchy (and wallowing in my victim hood) to get one while the gettin was good. Or I got too old and too set in my ways to want to train one in, and the trainable ones are too young for me now.

Yes, now I know I'm an old spinster at 37. And I'm not allowed to like it. But I do. I like my autonomy. I like living my life on my terms. I like not having to play the Mars and Venus game. I like that I can set my own standards as to my personality and standards and appearance and not have to play into guy expectations. It seems like you either have to compromise your standards or choose to be single. I like my choice.

Yes, I know. My standards are too high. I hear this all the time. My standards are too high if I want an equal relationship with a guy who understands and supports feminism and human rights. If I want a guy who not only refrains from saying "I'd hit that" but who doesn't cheer along when his buddies say it. If I want a guy who is not insecure around a smart or successful woman who doesn't feel like her main job is to feed her husband's ego. If I want a guy who can sit down with me and negotiate a conflict in a direct and amenable way for both of us and not let his entitlement or ego get involved. I know that no one is perfect, but I would want a guy that at least understands what an equal relationship is and does his best to strive for it.

I really don't feel like this is sour grapes, this isn't an uptight woman that needs to get laid. I can get laid anytime I want, as can most women, so I never understood that whole line of thought. This isn't a bitter old maid that is making excuses for not having a husband or a lesbian wanna-be or whatever else I get accused of. I do not hate men. I understand to the extent that I can that they are under their side of the patriarchal pressure as well and it can be hard to impossible to see above that. I see the good in men. I enjoy their company. I have many that I love and admire and even lust after a few (Okay, that guy Logan? On General Hospital? He is the only reason I watch that intrepid drivel. That's pure lust, I admit it.) I can see the good in men even though I can also recognize the weaknesses. They are human and deserve the same acceptance and level of respect as women. They deserve to be treated individually and not as a demographic, which admittedly I have failed to do here. I'm extremely lucky to have a long time relationship with a man who, if not always practices equality, understands it and is willing to listen and learn about my frustrations.  And who sees me as a fellow human above all else and who tries to contribute what he can to the extent that he can. I have two boys who I love unconditionally and who have in them both the influence of their father and the DNA of another man who I appreciate. I have a father, who although far from perfect in many respects, is responsible and was accepting of my mom as (almost) equal partner. He's about 100% times better than many other men from his generation.  I have NIk who is good-hearted and funny and forgiving and smart and tough. And J who is sensitive and witty and almost precious in his rose-colored lack of awareness of all things unjust in the world. I'm not lacking for men in my life. Men who show me their goodness and kindness on a day-to-day basis. Those guys? Top 25 to top 15, at least. ; )

But marriage? The whole institution bugs me. I'm not compromising. I'm opting out, and I'm perfectly fine with that.

Two Questions, Unrelated

A few of you know that I grew up in the Omaha/Council Bluffs Metro Area and have inquired about the Westroads Mall shooting. My first reaction is that I have a cousin who I thought worked there, and I hoped he was alright. But I since found out that he doesn't work there anymore. It doesn't appear that I know any of the victims (although D's aunt knows the landlord of the killer, so there is always six degrees, I guess.)

My second reaction is the memory of the sheer amount of clock hours, the embarrassing number of weekends of my life I spent at that mall growing up. Countless. I can still remember where every store was. I still remember the time I barfed in Seifert's and then took about 3 years before I entered that store again. I remember which of my high school friends worked there and where. The route I took around and around that mall just hanging out. So it is a bit surreal.

But my third reaction, the strongest, is sadness that these mass killings and seemingly random acts of violence by young men are becoming more and more common and that no place; no one is safe. And that now Westroads will have extra security guards in place and maybe metal detectors and employee security trainings and extra police response training and all that. And how that is so not the right way to deal with this. It is like placing all kinds of parachutes and netting and ambulances and books about how to respond to the medical needs of people who have fallen a deadly distance at the bottom of the cliff while completely ignoring the kids at the top who are running towards it.

Recently, in Oregon, a man committed suicide after he wandered for three days seeking help because he lost all of his belongings on a bus and had no money or I.D. or anything. He most likely had a mental illness. And he went to the Salvation Army and the Emergency Room and the Sheriffs office and the homeless shelter and the county welfare office. None of them gave him any more help than a coat or a meal and sent him on his way. So after wandering for three days, he put himself in front of a train and was killed.

I don't know this Omaha kid's story, I don't know whether he asked for help or what happened. But I do know that many non-profits and government agencies do not really help anyone but themselves. They all provide "education and referral" which is code for passing the buck to a different agency. I know that Nebraskan's, if they are like every one else in the country, will throw up their hands and say, "there were no definitive warning signs! We could not possibly imagine that this guy would walk into a mall and start shooting!" And then they will up security and that will be that. But there are ALWAYS warning signs. I'm not blaming anyone for what happened, but I do know that the number one warning sign is when people are regarded as throwaways. Hopeless, helpless, valueless people who are not worth dealing with and are brushed aside as being less than human. That is the biggest warning sign of all. The person you don't want to deal with and no one else does either? The one you don't want to touch? That is the one who will do something like this.

Girls withdrawal and go inside themselves and become anorexic or do drugs or become strippers or prostitutes and disassociate from those who have disassociated from them. Boys? Much more likely to become violent. And why wouldn't they? We train our boys practically from birth to become violent. Read this interview by Army dude/FBI trainer/author Dave Grossman if you have boys. Chilling.

But for the people who are dealing with this loss right now, I extend my sympathies. Hopefully we as a society can come up with a better plan than extra security at Westroads Mall.

*********************************************************************

Okay, now for something totally unrelated. I've been asked about what my deal is with YouTube and whether I can even see/hear it or not.

I really can't see YouTube videos that well. I go to that site a lot, though because it is kind of like the poor man's iTunes. I don't have an mp3 player. I don't really even have a stereo. I can listen to CDs on my computer or by using the DVD player, but most of my CDs are not unpacked and I don't even know where they are. It is easier to just do a you tube search when I want to hear something.

Can I hear music? Yeah, kinda. I can hear it best with headphones. But I mostly hear the bass/rhythm lines. I've actually become kind of a fan of the bass (You Go! John Taylor!) because of that. I never paid much attention before. But, here is the deal. And why everything I have posted here is such embarrassingly old, old school. New music that I am unfamiliar with just sounds mostly like the rhythm section. When I listen to old familiar music? My brain fills it all in. It seriously sounds like the whole song in my head to me. I know that if I really stop and concentrate, I'm only hearing the rhythm section. But my brain just compensates and it integrates perfectly. Hard to explain. The further back the song from my youth, the better this works. Songs from my childhood and early teen years are just ingrained so much that give me a little hint of the song and I hear the whole damned song just like it was coming through the headphones.

I have thought a lot recently about how I need to bring new music in for the kids sake. They do have a small radio/cd player in their room and they listen to kid music like putumayo and raffi and stupid annoying kid songs and stuff. They also listen to a lot of classical. But I have thought about trying to make a better effort to expose them to new and different kinds of music. My buddy Scalzi was generous enough to ask his readers on my behalf for suggestions for appropriate music for kids that is not specifically kid music. I got literally hundreds of suggestions that I am still sorting through. But I should have asked you all as well for suggestions. So go ahead and bring 'em on if you have some.

Another reason I like Youtube is because I like live performances better than most studio recordings. I always have. In skating there is a saying that you are either 20% better or 20% worse in competition that you are in practice. (Me? 20% worse, btw.) I think musicians are the same way. YouTube has some great live stuff that you just can't find on itunes. It has a ton of sucky stuff, too. But it is fairly easy to sift through it.

Take another old, old song like Fleetwood Mac's "Silver Springs" for example. The studio version is just a sweet little teenage girl break-up song. Its okay. But nothing all that wonderful. Now take this live version. The emotion in it (and the irony that the person she threatens to haunt forever with the sound of her voice is right there next to her--30 years later--still stuck listening to the sound of her voice, heh) makes it a whole different song on a whole different level.

I don't know, I'm a You Tube Junky. I put them up here because I used to have a section of my old website that was called "current song in my head" and it is interesting to go back and see where my psyche was at that exact moment. The current song in my head section is a better snapshot of that than anything I probably wrote. I don't expect 99%, if any, of you to actually click through the videos. I will sometimes watch other people's videos but often don't. Who has the time? But if you want to, fine. If you don't, doesn't bother me a bit. I guess I just have it there to remind myself of my state of mind at the time. Or of songs that I can fill in with my brain.

Appropo to Nothing...I Go Off On Some Garble-ly Gook About Truthiness

I've been pondering a little philosophical exercise today about truth and honesty. I promise this post is not about my in-laws! But it is something my in-laws have said to me a few times in the past during our problems and D just mentioned it again to me the other day. It is something to the effect that I am too honest, or that I somehow "get off" on honesty, or that I put being honest/or otherwise what I would consider "right" on a higher priority than relationships.

Since it is an honest criticism of me, and I try to see what I can take and grow from that. But the whole thing just confuses me. And maybe I am just incredibly dense. I mean be critical of my tact, of my diplomacy, of my patience, of my timing--all of which well and truly suck at times. But I don't get the whole being honest as a means to jeopardize the relationship thing. How can being honest be mutually exclusive from caring about relationships? How can you actually choose one over the other like a multiple choice test? For starters, lets be clear here. I am not totally honest. I lie like the rest 'uv ya. Little white lies or lies of omission to spare feelings. Lies of laziness so I don't have to explain myself. When I was younger, I could tell real whoppers just to have something interesting to say. But probably because of that, and the times I got caught on it, I have really been uber-sensitive to being honest. To me, honesty and truth are the goals we want to achieve. Truth isn't only a tool to get to a healthy relationship, truth equals love. When you open yourself up for someone to see the whole, real you...and you, them...you allow them to love you in your entirety...and you, them.

Is there ever a circumstance when truth is not the goal? In any facet of life? I don't know. I'm pondering...

Of course there is the example of your friend, about to go on a date, who is excited about her new dress which you hate. She asks you if you like her dress. If you know her well, you may know that what she is really saying is, "I'm so excited about this date and this dress and I want to share it with you!" Or, "I'm nervous and I need you to boost my confidence!" She's probably not really asking whether you like the dress. Why is your opinion of her dress even that relevant? You can either give her what she really wants: Shared excitement or a confidence boost, "You look so excited and happy that you just shine with beauty!" "You always look beautiful when you wear something that shows your own personal style." You can even be honest, "Well, that dress wouldn't work for me but I'm glad you like it!" Or, maybe, if you've really cut through the crap and you're really close, you are lucky enough to understand that each of you have entirely different tastes and you will joke to each other about it: "Oh, you know how I LUV when you dress up in pink ruffles! You look like a dime store bridesmaid-turned-ho!" (When you get to that level of friendship, isn't that just the best?) And because you have an honest relationship, you may also know when she really, really values your opinion on the ACTUAL dress itself. Like she is getting ready for a job interview and How do I look? really means How do I look? Be brutally honest because I don't want to screw up this interview and I need your input. Honesty is the only way to get to these places in a friendship. Otherwise, you may hang out, but you sorta reach a stagnancy at some point. We all have these, I think they are called long-term aquintances.

There is a book called Radical Honesty by Brad Blanton that explains how being honest (I don't get the Radical part, I guess it just means, not even a little white lie) can help you to have more meaningful relationships, better life management and organizations, better success in career, etc. They did a story on it awhile back on 20/20. They showed how being honest improved people's lives. But then, and this cracked me up, Barbara Walters said in the epilogue, something like, "Don't try this at home without a trained professional." So, we are so dishonest now that we need a trained psychologist to monitor our having honest relationships? Of course, the book talks extensively about tact and diplomacy (so I should probably go read it!) but the tone of the 20/20 spot was just that this was such a totally way-out there and novel idea. But do you ever imagine what it would be like if we couldn't lie? Like if we lived on Betazoid or something and we were all empathic? And how much that would fundamentally change our society? Hmmm...

A harder one: A death bed confession. Do you tell your dying wife that you cheated on her? Hmmm. I don't know. But I have to open my mind up to the possibility of forgiveness. Maybe the wife always suspected or knew. Maybe she's been waiting for you to fess up to her so you guys can clear your baggage. Maybe the perspective of dying makes the cheating small and not important anymore so even in the last few minutes, the relationship would grow stronger with the honesty and the understanding that in this life, we all screw up. The answer here may be entirely situational. But I can't say that categorically honesty wouldn't be the best way to go.

Truth, of course, is relative. My truth may not be your truth. My truth right now may be different than my truth five years ago. It is a moving and changing thing. It is fluid and only remains a truth in the very instant that it exists. Even scientific facts are not really facts. They are only facts until they are proven not to be any more. My favorite is when people say something like: Fact--38% of all Americans ate french fries yesterday or something like that. Statistics are the most fluid facts of them all. They are only true to the specific subjects in the specific study and are vulnerable to the specific scientists interpretations and scientific model. I'm not saying they are useless, they are little snapshots of truth. But they are not facts. Truth is the best we can do right now. Truth is what we know to be this instant until we know more, better, or differently.

I dare say, and I don't know if it is true (heh), that seeking truth may be the meaning of life. The highest calling. The honor we strive for. The constant searching and peeling back of the layers and observing and experimenting and seeking out, is all to find truth. And then when our time runs out, to pass the torch of light to others so they may continue to seek truth and build on what we've found.

One of the things that appeals to me about Unitarian Universalism, is the very high and almost "holy" value and priority they put on truth. And the recognition that none of us know it, and we are all taking entirely different paths in our search for it. And that we will never get there in this lifetime, but the pursuit is still worth it. The searching out to find it leads us to beauty. Beauty in the earth and in each other and in our society and the universe. And that there is beauty and wonder in the unknown. How lucky we are that we don't know everything so we can imagine all the possibilities? Truth is beauty, as they say.

And truth is also change. Which means that truth hurts and then it heals. Because change is always about death and rebirth. And it is when you find that your old truths aren't working and a new truth is what is real for you, that you know you need to change. Which sometimes sucks. One thing about truth is that once you have found a little piece of it, you cannot go back to the lie.

I think about times in my life when I found a new truth and it meant I had to change. I could not live within the lie anymore. My very earliest memory of this was when I bugged my babysitter to death quoting commercials verbatim and telling her she bought the wrong laundry soap. She finally said to me, "Lisa, commercials lie, ok? Don't believe commercials." I was probably like 5, and I had no idea that what I saw adults telling me on the TV wasn't true. So, then, I became a commercial skeptic. And had to think of the world differently in a way. It was my first real truth I learned about a market economy, and more significantly, that adults lie.

And then there was the stuff you learn in college which completely contradicts everything you learned in high school civics and history. Columbus was a genocidal, slave-trading asshole. Wars are fought many times primarily to keep the military industrial complex in the black. That kind of stuff. I didn't really clue in to media bias that much until the early 9/11 coverage when some channels broadcasted the BBC or other international news and I saw how different their takes were on the attacks and why the U.S. was targeted. This truth made me not ever be able to watch a story on CNN again without checking ten other sources as well.

There are the truths you learn about oppression and social injustices. Every thing from watching the miniseries "Roots" and "The Holocaust" when I was like 7 years old, to my current obsession with the patriarchy since having given birth to boys that I highly desire to figure out how to raise not to be pigs.  You can't go back after you've learned the truth. You can't go back and think that humans don't chain other humans on stacks and stacks of ship decks to sell. You can't go back to a more innocent time. Someday I will have to teach my children about the generations of ways men have overpowered and dehumanized women and my little sweet innocent boys will know that this is possible. That humans can cross that line and go to that evil place. And then I will have to hope that they find their own truth without ever crossing those lines and going to those places.

Truth hurts, but it heals as well. I remember a time when I found out that I was a minority in my own family. And that they had conditioned disdain for people like me. (For we are all victims of institutional oppression, even the so-called oppressors.) It was in blind rehab. And I had this moment of clarity when I found that some of the ways my parents treated me were because of their fear and disdain for blindness and disability. And I understood this fear, because I had it, too. And I learned that the fear about blindness is not in being blind itself, which is very survivable-if not a pain in the ass-but how you will lose your place in society and be outcasted and marginalized.

What shocked me most is that the truth was that society was lying. Being blind wasn't in and of itself a bad thing. Neither is being black or gay or female or poor. The truth I found was that the caste-ing of all of us was the big lie. And that these lies were so pervasive, that even a mother's love couldn't circumvent past them sometimes. Families were being ripped apart by disability shame, gay shame, interracial marriage shame, whatever. A mother's love couldn't see through the lie? Society's lie was that powerful? Once you see the truth in that, you can't go back. But then, time after time, I saw mothers find out their kids were disabled or their sons and daughters were gay, and I saw them push themselves so hard to find a new truth, and to move past the lies that society has told them. And once they did that and learned everything they could learn and reteach themselves new ways of thinking, they turned around to the truth right in front of them that was always there. Their child, shining out beyond the lies. Truth is love.

The only thing you can do when you are immersed in these huge institutionalized lies is try to vigilantly shed some light on it so  that yourself and other people see it for the lie that it is. This has been one of my main passions for the last decade or so. To try to search for the truths in what society has lied to itself about. Its ugly. And some people want the truth to remain hidden from them. They don't want to know. They don't want to have to go through the gateway of truth and never be able to come back to the realm of delusional innocence. We all live somewhere in the realm between delusion and truth. Some people try to forge ahead and much as possible and some try, kicking and screaming, to stay as far away as they can from finding out something that may make them have to change.

The truth hurts, and it heals. The truth is change. When you are blind and suddenly you find out that you'll do just fine as a blind woman, but also that suddenly most people won't think you are worth a shit... YOU will know. You will know that you are the same person. That you have inherent self worth. That you are not the person society's lie will have you to be. You won't have to believe the press about people like you, because you will know the truth. Maya Angelou knew why the caged bird sang, blind people know that they are able to "walk alone while marching together." The truth heals.

But sometimes I see other disabled people who still believe that they are worthless, that hate themselves for not being what others want them to be. They believe the lie that they are a deficit and not "whole" or maybe even better off dead. And I see battered women and children who won't leave their abuser because they think they deserve it. Or young black men and women who think that they are the image of the thug or ho that they see on TV. And I see a woman with holes in her clothes get off the bus that was 20 minutes late and go into the WIC office only to be told she missed her appointment and she can't get her vouchers this month, and I see her think that she deserves this. And I see white people, who think it is okay to go on not knowing or understanding what is happening to their neighbors. And I have to try to be be honest with them, if I can, with what truth I see. They may see something different. And together, we may find something deeper in the truth. Truth is change. But you can't not see things once you see things. And you can't not try to do at least a little something about it if you can. It isn't me that is the pain in the ass, it isn't the truth either, the truth will set you free. It is the lie that is the pain in the ass. It's the lie's fault that it's so hard, not the seeker of the truth.

So, yes, speaking the truth means more to me than the relationship. If it is even possible to make that statement. Because speaking the truth IS the relationship. There is no relationship without honesty. Truth is love. My truth may not be your truth, and if they clash, we have to work together to find out what the lies are and where our honesty lies together. If someone isn't ready to face the truth, then perhaps we go our separate ways for a while, and come back later...or not. I live, as we all do, somewhere between truth and delusion, but I'm going this way with all my energy and spirit and power. And I'd love to travel with as many people who want to come along for the journey. Truth is love, and I'm reaching towards the light.

He who seeks the truth and trembles
     At the dangers he must brave,
Is not fit to be a freeman -
     He at best is but a slave.

Be thou like the first apostle,
     Be thou like heroic Paul;
If a free thought seeks expression,
     Speak it boldly, speak it all.

Face thine enemies, thine accusers,
     Scorn the prison, the rack, the rod;
And, if thou hast truth to utter,
     Speak, and leave the rest to God.

Borderline

My sister said to me once that she thought my mother complained about her health (fatigue, minor aches and pains) at our age because she had a 15- and 17-year-old so maybe she just felt older than she really was. Maybe, I thought, but geez, I've felt crappy since my late teens/early 20s. Haven't you?

My sister is a person that I categorize as "hyper-healthy." D has a hyper-healthy brother and my father was too for most of his life, but now age is causing him some relatively minor health problems. Hyper-healthy people have never been hospitalized, never had a serious illness, never had problems with chronic pain, and very rarely even get a cold. And if they do, it tends to be mild and they get over it quickly. They don't seem to have trouble sleeping or eating. Their periods are exactly 28 days apart, they don't have cramps, and they ovulate on day 14. They never get accidentally pregnant while on birth control but then get suddenly pregnant the very first month that they start trying.Their weight never fluctuates more than 5 pounds. They have boundless energy. They wake up spritely in the morning and don't stop until their predetermined bedtime, where they fall asleep in less than 20 minutes and sleep all night. You get what I'm talking about, right?

Now my sister, who is all down with the meritocracy, would say that this is an earned privilege. Nearly anyone who wants to be this healthy can be if they sleep 8 hours on a regular schedule, eat healthy foods in moderation, and exercise daily, don't smoke, etc. And of course she is right to a point, doing all these things will only help you and make you healthier. There is no downside to living a healthy lifestyle. We should all strive to do that, and I'm not going to argue otherwise.

But I think a lot of it depends on where you are starting from. Whether it be genes or something in the environment that is affecting you, some people seem to start in a position of hyper-health. Others have to struggle and work from a more compromised position. My sister leads a pretty darn healthy lifestyle. She has a lot of discipline and that's great. She doesn't drink or smoke or do drugs. She doesn't eat the greatest diet, but she does eat in moderation. She walks, I think, around 3 or 4 miles a day, or rides an exercise bike for around 30 minutes or something. All that is great stuff, and it all positively contributes to her hyper-healthiness. But then we all know people that drink, smoke, eat crap and never get off the couch and live to be 100 with very few health problems. And then we also know people who are eating organic wheat germ everyday and doing everything right, but get cancer or something.

So, I think that lifestyle does have a factor in health, perhaps a large one. But I don't like it when people do the blame thing when someone else is struggling with health issues. Even if their struggle is trying to implement a healthy lifestyle. How much harder is it to get up and get yourself on the exercise bike when you have chronic aches and pains, vs. someone who feels great and energetic all the time. Or when you've worked all day as a nurse or a teacher and just stressed out your back and are exhausted compared to someone who drives to work in a cushy office all day. (Then there is a whole socioeconomic component to this, but I'm not going to get into that today.) I'm not saying that some people should be "excused" from trying to live a healthy lifestyle, I'm just saying that good health is a gift, not an entitlement based on the fact that you have the luxury of eating well.

I had a bad bought with kidney stones a few years back. I ended up having several failed surgeries and one partially successful one. After it was over, my sister asked me what I was going to do to prevent this from happening again. Um, pray? I can't control everything in the universe. Especially how my kidneys decide to process calcium. The only recommendation I ever received was to drink several quarts of water a day, but this was contraindicated by my chronic nephritis (kidney disease) that necessitates that I limit water to the usual 6 or so cups a day. She accused me of wrecking my metabolism because I had these two or three periods in my life where I lost a ton of weight. (Not anorexia, but just a very nervous anxiety ridden g-i system. I've since learned to manage this to a great extent.) I remember her saying, "Remember how when you are a little kid, you'd barf all the time? I don't think I've barfed in 25 years." I was like, um, okay. Count me as having barfed last week? I may have screwed my metabolism, but I surely didn't do it knowingly and intentionally. I think it is a control thing. If you get sick, you might have been able to do something to prevent it. She said that when my mom got cancer, she learned that you never really can tell that you are truly healthy. Well, duh. (I'm picking on her here, but I'm just using her as an example of this mindset. I think a lot of people have it.) D's hyper-healthy brother has done the same thing to him. Once, he fell out of his wheelchair in my driveway and broke his leg. It was one of those things where, had a healthy person fallen the same way, they probably would have just suffered a minor bruise. His brother asked him how he could prevent the loss of bone density that caused the break. D said, um, not be a quadriplegic? Sometimes you can take an internal locus of control too far.

Anyway my health has hovered around borderline. I don't mean that I'm incredibly sick. I mean that I'm in between blindness and low vision. I'm in between deafness and hard of hearing. My kidney functioning hovers right on the border of what they consider a serious problem. My blood work is always either a little over or under the range of normal. I have some but not all symptoms of retinitis pigmentosa. I have some but not all symptoms of Stickler's Syndrome. For a while it was Ushers Syndrome, then Alport's Syndrome. For a while I was diagnosed with lupus. For a while I was diagnosed as anorexic. For a while I was diagnosed as having rheumatoid arthritis. For a while I was diagnosed with having Epstein Barr Syndrome. All were refuted by subsequent doctors with a different take on it. When I was trying to get pregnant, none of the usual pee stick tests worked on me. I was always ovulating (according to the tests). I was simultaneously always menstruating. Maybe I have Stein-Leventhal, maybe I don't. The markers are kinda there, but not definitively. Doctors always tell me that something isn't quite right, but they aren't sure what it is exactly. It is all idiosyncratic, and since I'm not deathly ill, I just have to deal with it. I'm borderline. Either right on the edge of lab work that would give me a diagnosis, or right beyond it. I hardly ever go to the doctor, except to get the usual kidney and retina checkups. There is not much point.

So, now...supposedly, I have hypothyroidism. This is a new one. When I broke my toe last fall, I finally went to the doctor. I haven't been since my post partum stuff. I got a complete physical and blood work while I was at it. And I half-heartedly complained about all my usual aches and pains, my fatigue coupled with weird insomnia, and the fact that I can do weight watchers perfectly for 2 months straight and not lose a pound. So, suddenly I have this thing. And I'm like, well why did I suddenly get it. She said it could come from being pregnant. But then she looked over some of my past blood work over like a 10-year-period and said, "oh, I'm surprised no one has said anything about this to you before. All your blood work is just teetering on the edge. And since your pregnancy, you've gone just below the normal range." Borderline again.

So, fine. No big deal. She tinkers around with some prescriptions and iron supplements (heh. cuz I'm on the edge of being anemic and these other drugs might make it worse.) I don't know if it has been long enough yet. Maybe it is psychosomatic, but I already feel better. I am starting to sleep at night in longer than half-hour intervals and I have more energy during the day. And I've lost 4 pounds before even starting weight watchers yet. All well and good.

I don't know if I have a good point to make. I think mostly I'm just whining about my health. I know that comparatively to many people, I'm very healthy. And it isn't something I even think about too much each day. I guess I've just been told all my life that I was being a terrible irresponsibly lazy ass and that was why I was sick all the time or missed class/work or whatever. I remember being in third grade and being sick a lot (and being too skinny, my first major eating/anxiety problem) and I was put in the hospital for four days and they ran all these tests. When I left, I asked my mom what was wrong with me, what they found in all those tests. She just said, "Lisa, you've just GOT to start blowing your nose more often. You don't blow your nose and that makes you sick and then you go into the hospital." I was just like, what? I went through all that to find out it was all my fault for not blowing my nose right? What I have realized is that I work a lot harder than many people to get a lot less results. So be it. I can do that. But I'm not going to be made to feel ashamed of it. There were days, many days, that I went to work in conditions that most people wouldn't even step out of their houses with. Severe kidney pain that makes you want to pass out. Being so dizzy that you wait till everyone else has left the meeting so they won't see you if you stumble when you get up. Stitches and drainage tubes coming out of my back from kidney surgery. Eye patches where I have to make sure the goo isn't leaking out all day. Days in high school where my contacts weren't working and I wore contacts plus glasses so there was no back up. I had to take them out and walk around seeing next to nothing. Reading books with all the way up to my nose. Sure, I've taken a mental health day or two. And a flu day at times. But I've also shown up and worked when other people would have been too embarrassed to or felt they were too sick to. I absolutely know that I've gone to work many times on days when my sister would not have even thought of it if she were in the same circumstances.

As far as that goes, you can only do your best. And I often see people that are successful, like really successful famous people who are doing 29 million different jobs (Kelly Ripa comes to mind), and I wonder, how much of where they are has to do with simply being born with amazing health? Not that they don't work hard and also have talent, but being able to work hard and produce from your talent takes good health to start with. It is a privilege, a gift that should not be taken for granted.

Like many people, it is hard for me to live a perfectly healthy lifestyle (if there is such a thing). It is hard to eat right when you feel nauseous every morning (which I have since jr. high). It is hard to work out when you are in pain from lifting kids and the crap you have to carry because you can't just put it in your car and sometimes even quadriplegics and their assorted accouterments. It is hard to deal with irregular sleep patterns that you don't understand and can't seem to control. And to plan your life around vision and hearing changes and never having a set routine for longer than a few months, because that's the way your life is. These are all truths that could be used as excuses, but still I try to improve all the time. I figure that the more days I do well, the more it can help overall, even if I do have days where it all goes to crap.

So, I'm doing Weight Watchers, because my doctor suggested it and it seems to be the most reasonable of all the craziness out there in the diet industry. I had several minor injuries in the fall. Sprained wrist, broken toe, a still continuing problem with my ankle. I took the six weeks off from the gym as requested, but could not take off from the walking. Still, most of my injuries seem to be healed or healing. I have started back at the gym again. (I sometimes took the kids there during my time off just for a break and so I could sit on a couch and put my foot up as directed. So if you heard me mention the gym, I really did go, I just may not have actually exercised.) I'm checking my blood sugars and they are good. (Oh, did I mention? I have this weird low blood sugar thing. I've had it since I was in my early 20s. I can check my blood sugar and it will be from 40-60 all the time. Which is really low, yet I will just feel tired. Once, in college, I did a demonstration assignment where I produced a video on how a glucometer worked and my blood sugar was 40. I got counted off for "inaccurately" saying that normal blood sugars were between 80-120. Doctors have done it too and can't understand why I'm not more affected. They just tell me to eat several small meals all day long and try to keep tabs on it. I've since been able to control it pretty much, and I haven't seen it get below 80 for a while.) I'm trying to figure out how to increase my exercise on the off days. I'm hoping that if I really do have a hypothyroid type o'deal, that the medication will really help with all this. My point is, I am working to do my part, but it is only a small part that I can control. The rest I just have to deal with (and by deal with, I usually mean blow off and deny.)

I look at my two kids who share an almost identical environment and lifestyle and I see the differences with them as well. Aaron always gets sick first. It lasts longer for him and is more severe than Naim. Aaron has the febrile seizure problem like I did as a child. Aaron has more trouble sleeping and eating. He needs to take breaks where Naim is just go-go-go. He's a healthy kid so far and I hope he doesn't inherit all my wacky lab work. But he just seems to be genetically a bit more prone to health issues than Naim.

I think the point I'm trying to make, if there is one, is that people shouldn't feel all entitled to good health, they should feel lucky. Much of your success might come from the lottery of your genetics rather than how much harder you worked or smarter you are than someone else. And although everyone should strive to live as healthily as possible, because this can only help you, people shouldn't be all holier-than-thou about their health as if it is all of their own doing.

Okay, I'll quit whining now and go count up my damned WW points.

Confessions of a Midwestern White Girl

I have been wanting to write some posts about race for a while after reading and learning a lot from blogs such as American Family and Peter's Cross Station and others. The doll incident has lead to a few conversations among family and friends. So, I thought now would be a good time to commit to doing one.

First, to answer Cheryl's questions about the doll incident: I believe the clerk was Caucasian. And, yes, I do believe she asked me about whether I really intended to buy the black dolls because I was blind. That said, I think she went on about it a bit too long. And then afterwords she was really nice and went to great lengths to make sure we got a 10% off twin discount on another two identical items that we purchased. She was not mean about it. It was just weird. Things like this that have to do with race are often looked at in isolation. Like if someone screws up on the race thing then they are an evil Racist with a capital R, bad person. I have no indication that she had any evil intent towards my ownership of the black dolls. But just that she made way too big of deal out of it for my comfort.

The thing about race in this country, is that there is no way of not looking at things through the race lens because we are all embedded within a racist culture. Each generation, we peel back the layers to expose it for what it really is, but we are still all stuck in the middle of that ugly, rotten onion. I am a racist in the general, denotative definition of the word. I am not an evil, intentional, hateful, overt racist. It may be more accurate to say that I reluctantly have racist tendencies. I try to peel back the layers and expose the truth for what it is and try to prevent others from covering that truth up with their own hatred. Yet, I still am stuck in the middle of the racist culture that we all are embedded in. Unless you've been living on another planet or have been stuck in an attic your whole life, you are most likely a racist as well.

Would I have bought a white doll if one had been available (and I could differentiate it visually from the black one?). This is the question some people have been asking me. (As if the answer is yes, then it negates the whole issue we have to deal with here.) I don't know for sure, but I suspect I would have bought the white dolls. Then I would have rationalized it by saying that there were so few black dolls in the store (true), that I should not take a black doll away from a black child. Although it does not bother me one iota that my kids will get and play with black dolls and I even think that it might be a positive thing for them to play with and care for black dolls. I probably would have picked up a white doll with very little thought. The fact that I even have to ponder this whole doll issue shows how embedded we are in the murkiness of racial issues in our society.

I can easily trace back my racism to my upbringing. Both within my family and community and the culture at large. My earliest memories of race--and by race I mean people of color, because I really didn't know that myself as a white person was just another race--are negative. I never heard the "N" word or other such derogatory racial slurs from my immediate family, but I heard them often from my extended family. I had some uncles and a step-grandfather that spewed trash talk about people of different races on a fairly regular basis. Even though my mother reinforced that this language was unfair and inappropriate, it still ensured that I was aware that people of color were "other," "different," and maybe even "less."

I remember a specific time when I was at my grandparents house and was coloring in a coloring book that I had gotten free from the grocery store. I think it was a "Harlem Globetrotters" coloring book, but at the time, I had no idea who the Harlem Globetrotters were. To color in the basketball player's face and body, I picked up the only crayon I ever picked up to color skin. It was crayola beige (or whatever they called it. You know the crayon I'm talking about.) My step-grandfather (one of the few humans on the face of the earth I have ever met with absolutely no discernible redeeming qualities) completely started yelling at me. "You can't color that N--- white, he's black. Look at that fat lip! You need to learn to tell the difference between a white person and a N---!" Then he picked up the black crayon, and violently scribbled all over the face in the coloring book that I had colored beige. I still can see that big black ugly and mean blob of scribbles that ruined my whole picture. I remember feeling really stupid. Like I should have known, and I had done something horribly wrong. I remember him calling my Asian uncle and cousin "chinks." I had never met them before as they lived far away and I had this picture that they somehow looked like or had something to do with chain link fences???? I just thought chink sounded like a chain link fence. I don't know.

But I never thought to color anyone brown, or anything other than beige. I never saw any black people. Not on TV (with the possible exception of Sesame Street. I think Gordan was probably the first black person I was exposed to). Not in my town in Iowa. Not in my books. Certainly not in my dolls or toys. Dark-skinned people were "other."

One shameful memory I have was the first day of second grade. I went in to my new classroom and sat down at a table. We could sit anywhere on the first day. A few minutes later, a dark-skinned girl came in and sat down at my table. I couldn't figure her out. She didn't look black, but she was dark. Her hair was black and straight. I thought black people all had afros (remember this was the 1970s). I concluded that she was just a very dirty little girl. Like actually with dirt on her face, dirty. I got up and moved to a different table. In turned out that many other kids in my class were also not very welcoming to this girl. Her mother came in one day and we spent the afternoon learning about Guatemala, and the very interesting story of how this girl's family had brought her to the U.S. It was a neat day because we got to skip our classwork and watch films and eat food and look at pictures about this girl's life, both in Guatemala and in the U.S. I felt bad that I had gotten up and moved. We eventually became friends until fifth grade when I moved away.

In another random memory, I remember asking my mother why blacks and whites couldn't marry. I asked why they couldn't, not whether they could or not. I just assumed they couldn't. My mom said that it was because an interracial couple would produce a child that was very strange looking and ugly. I remember her saying that they might have red hair or a disfigured face. Now, you have to realize that my mother came from the same town--with that family--from an earlier generation--and grew up with way less education than I had. What I learned from her about race was probably a huge improvement over what she learned about race from her parents. My mother also evolved in her thinking over time as we all do, but she started from a point way behind where I started. Which was pretty bad. I remember years later we went to a family gathering of her family. We had not gone in years. My cousin had become a new teen mom and had recently had a baby boy with a black father. The baby was sleeping when we got there and the whole family (including asshole step-grandfather) was in the living room. My mom asked if she could see the baby and her niece said she really didn't want to bring him out right then. (Now that I'm a mom, I get it. Let sleeping children lie. I don't know if the grandfather factored in as well.) But my mom was very insistent and I didn't quite get why. So in a bit my cousin brought out the baby and my mom went goofy fawning all over him and holding him and complimenting him and everything. Then, several family members just got up and left the room. I knew that my mom wanted to make a point, like that this is okay and how you need to accept this child. Now, I would have flat out said something, but whether it was out of guilt or spite, my mom wanted it known that she was going to welcome this kid and was at least not so misinformed on biracial babies anymore.

I think that coming from this type of background made me want to NOT be a racist more than anything. Out of spite towards some members of that family, if not that it was just the right thing to do. I didn't have any clue as to how to go about it. But I knew I didn't want to ever be like them. I didn't know any people of color, but I knew that they all couldn't be as bad as all these guys who just sat around doing nothing but drinking, smoking and being hateful assholes.

My suburban Omaha high school had around 2000 kids in it. About 20 of them were black. These kids mostly hung out together. They were actually sort of treated as some kind of novelty by everyone else. One was on the basketball team. He was the only black player on our basketball team. If I remember correctly, he was an average player, not the star of the team points wise. But he was the star of our basketball team. People would chant his name to get the coach to put him in. It was like we were proud that at least we had one black player on the team. We were more legit than the other schools? I don't know.

Another random memory that just makes me cringe now: There was a black girl on the cheerleading squad. Her name was Crystal. I didn't know her at all. Once, I went over to a friend's house. I knew she was friends with her neighbor, a black girl named Chanita. I had heard her talk about Chanita before but I had never really talked to Chanita myself. One time, she had come over to my friend's house and my friend had gone to the kitchen or somewhere. I remember being really uncomfortable, like I didn't know what to say to her. Finally, I said, "So how's cheerleading?" She looked down at her nails and said, kind of exasperated with me, "That's Crystal." So, I felt so uncomfortable about saying something racially stupid, and then I went and said something really stupid. And the other sad thing was, I could tell just by the way she answered me that she had to put up with stuff like all the time. I was just one of the many she dealt with that didn't have a clue.

I wanted to 'get it.' I wanted to do the right thing. But I just didn't know how and was too uncomfortable admitting that. I think I had a real revelation when I was in blind rehab. This is where I really learned that I, too, was a minority and kind of what that meant. I learned from having to study how the media portrays disabled people to question everything the media ever says about anything. I remember watching a debate on Nightline about a blind guy who was the first to sail the Atlantic alone or something and had plans to be the first blind guy to sail around the world. Ted Koppel moderated a debate between him and William F. Buckley, who basically argued that he shouldn't be doing it. And not only that, but that he couldn't possibly have the ability to really enjoy sailing as a blind person. (Nik sails all the time, by the way, on Lake Ontario. He lives for it.) I remember just thinking, "Why is this useless, stupid debate being given an hour on Nightline? Who cares if a blind guy wants to go sailing, sets goals for himself, and enjoys it?" The answer was that because that blind guy has to do every little thing within the context of a culture who thinks disability is a deficit, a problem, a tragedy. Although the nature of the prejudice toward the disabled and racial minorities manifests itself in very different ways, it stems from the same oppression. Privileged people with a sense of entitlement are afraid of the fact that they will eventually have to give up some unearned power to those they've oppressed.  It is what keeps disabled people unfairly imprisoned in institutions and it is what keeps black men unfairly imprisoned in jails.

Now I will probably get a bunch of hate mail for comparing the two minority groups, as I always do. (In which I will probably reply: There, there, now. I know, I know. There really is something wrong with the disabled and they really do belong in institutions! And nobody's against the disabled, whereas people hate the blacks! Shush, now. It will all be okay. We will just have to continue this discussion after we've all read a few more books and maybe waited another hundred years.) But, anyway, this is my story and that was part of my journey to figuring out power and oppression in this country and the world.

After blind rehab, and learning more about the disability rights movement, I still didn't know what I was doing. But I did become more comfortable just trying my best to do the right thing. Instead of being all flustered about it, I just tried to do and say the right things, and if I screwed up, I was just comfortable in the fact that I tried and that I would apologize and learn something afterwords. I watched as people fumbled around with me. People who couldn't use words like, "look" and "see" around me and said things like, "Did you watch, oh! sorry! I mean did you listen to that TV program last night? Oh, I'm so sorry!" And I would just tell them that I wouldn't melt away in confusion if they used the words watch or see with me. Its all good. I could tell the difference between the people who tried and the people who just flat out avoided me or speculated about me behind my back. I much preferred those who tried, fumbled and corrected themselves. I thought that perhaps racial minorities might feel the same way.

Also I was in college now, and although still in the Midwest, I was in closer proximity to a much more diverse population. I also started taking opportunities to take classes on multicultural issues. Shannon is right. Some of this learning to be less racist is just about opening book after book after book and learning real sociology, current events related to race and culture, oppression literature, and real history. Not the history that you learned in school. But real history from diverse sources. I have read what I could, but I still could do a lot more work in this area myself. I think that there is a difference between being uneducated and ignorant. Uneducated means that you have not had the opportunity to learn (yet). Ingorant, deriving from the word ignore, means that you purposefully avoid knowledge that you know might challenge your assumptions. I am not free from either lack of education or ignorance. But I do try to identify it when I discover it and try to learn. I don't thin there is any way any one person can know all the history and sociology of all the people on the planet. But when the necessity comes up, I think there is a responsibility to seek out that knowledge.

So I still fumbled around. In my freshman year, the whole small college ate in the same cafeteria. There was the black table, the Asian table, and the other white tables separated mainly by sorority and dorm. I would go up to the black table or the Asian table and ask to sit there. They would let me. Then we would all sit around making polite conversation and feeling uncomfortable. Finally, one of the black girls pulled me aside. She said, "We all like you, and we don't mind you sitting at our table. But wouldn't you feel more comfortable sitting with your dorm mates?" I kind of shrugged. "OK, let me ask you this? If there was a table of all blind people available here, would you sit with them?" "Yes," I said almost too quickly. "But maybe not every day." She asked me why. I said because I have to deal with all these people who don't get me and ask me stupid questions and say stupid things and I have to politely deal with them and I'm always the only disabled one in the class and I can never even skip a class because everyone would know and it gets tiring. If I could sit with a table full of blind people, at least I could relax for part of my day. "Exactly" she said. She suggested that I just sit with them every once in a while and maybe develop relationships with some of them one on one first and then wait to be invited to sit with them. And they did invite me on occasion after that. (Perhaps in part because I had no blind people table to go to.) No one likes to be used as your political point you're trying to prove. My lesson here was that I need to develop genuine relationships with people and earn my friendships in a genuine manner. Plopping myself down at their table like I was so racially above it all was a bit naive and a lot contrived.

Once I was watching a group of black students give a talk in my sociology class about race issues on campus. The Q and A session got heated. And although I actually had some of the same questions as the students (i.e. Why didn't the black people rush the Greek houses and then go off on their own and form their own groups to complain about lack of integration on campus?) I kept my mouth shut and listened. I knew I was as ignorant as the others, but I also saw that these speakers had that same aura about them as I did when I was on panels about blindness and disability. No question phases you because you've heard it all before, you have pat answers down that you can recite in your sleep, and you are oh, so very polite about answering them. But there was an undertone that I recognized. Just slightly underneath the current of the conversation. One of just being so exasperatedly tired of getting into the same old debate again and again. I didn't want to contribute to their exhaustion of the topic. I didn't want to be one