Saturday, June 30, 2007
This is last years winner Ochi "Dainoji" Yosuke:
I swear, if I ever get the chance I'm moving to Japan!
Sunday, June 24, 2007
Saturday, June 23, 2007
Those first few years of having Systemic Lupus Erythematosus were pretty challenging. Before that I was just "sickly", but knowing that it was a lot more serious than that shifted my weltanschauung entirely. I still didn't understand how fortunate I was. Though it was the worst form of lupus, I didn't experience any of the organ failures that are so common among people with SLE. It was bad enough for me to have significant health difficulties but none of them reached the life-threatening level. So, issues like end-of-life care and custody of my daughter weren't much more than abstractions that most people my age are happy to put off until we're much older.
Then along came the cancer and all of that changed. From the moment I was diagnosed, I had all of these decisions that needed to be made because the situation was life-threatening even before I knew it was there. Because my cancer is rather rare, the doctors had to consult with other physicians around the United States in order to see what could be done to give me the best achievable outcome. I would need radiation therapy right away, followed by surgery as soon as the team of doctors could be organized to do it. Even then, the likelihood of me surviving the surgery was not very good.
How do you deal with news like that? At the local cancer support center, we have a special support group for people who are terminally-ill. In those meetings we've talked about how each of us reacted and from those conversations it seems that people basically, deal with it like everything else. If you're a person who is prone to go out and toss back a few stiff drinks or go to the gym and smack a punching bag around, then I suppose that's what you'll probably do. I don't know if I'd say that there's any one way that a person should react even though I think that some options are definitely better than others. You just do what you need to do to cope while your brain has time to process the next few actions that will need to take place.
I tried to deal with everything at once. I started trying to figure out who was going to have custody of my daughter once I died and whether or not I wanted a casket burial or a nice cremation. I tried to sit down and write my final letters to my family members so that they would know how much I loved them and how I wanted them to remember me. But guess what? I couldn't do it. Every time I tried to accomplish these really huge tasks, I just couldn't bring myself to do it. I wasn't ready to deal with my own mortality.
It's a subject that I think is difficult for a lot of people in this society. We have a real aversion to dealing with death. I don't know how it got this way; It certainly isn't like this in every culture. I was reading a post by BrownFemiPower (the bestest chican@ blogger in the world) a while back ago and she mentioned how she and her son were planting seeds in the garden. They talked about how what's dead doesn't stay dead and how all things that were once alive play a part in the development of all life that exists now. Why couldn't I have been taught that as a child? Instead, I got stuck going to creepy funeral homes where they find the ugliest clothes in the world to put on the corpse and then couple it with a face full of make-up that looks like it was done by Barnum & Bailey. Does it have to be like that? It's no wonder so many people have a "thing" against going to funerals.
Anyway, even though I tried to get it together, when the day for my surgery rolled around, I still hadn't worked out all of those issues that I knew needed to be taken care of but I was out of time. Fortunately, I did survive the surgery and my child wasn't left without a mom before I'd even had the chance to finish teaching her how to comb her own hair. I'm happy about that. I can't even begin to express how happy and grateful I am about that. There are plenty of people who have experienced very poor outcomes even though the surgeries that they had are considered fairly routine.
So, now that the surgery was over and I had at least a little while longer to make a will, figure out how to make sure that my daughter would remain in the custody of my partner after I died and start making all my wishes known to my extended family. That last task has turned out to be a lot more difficult than I thought it would be. In fact, it's proven to be even harder than it was for me to get through those initial moments after my diagnosis.
During the Terri Schiavo controversy, my partner and I watched as this woman was made into the poster child for several different political groups. It angered me to no end. What I felt was a personal decision was turned into a public fiasco complete with religious wackos and crocodile-teared politicians claiming to care about someone they couldn't even be bothered to go and see for themselves. I made sure to tell my partner that I wouldn't want to be kept alive in that state.
As a biology major in college, I had taken a medical ethics course where we discussed cases similar to Schiavo's. Persistent Vegetative State was one of those issues that almost everyone agreed about. Though there were some who generally objected to the concept of euthanasia, when it came to people in PVS, not many were willing to say that it shouldn't be allowed. After all, who would want to live like that, right? Not many can say that they would prefer a life where they are completely reliant on others to care for their most basic needs.
When the professor described cases where the person was constantly plagued with bedsores and their limbs and digits had curled up so tight as to make it impossible for them to lie out straight on a bed, we were all mortified. We were taught that with PVS it wasn't a case where the person had any cognitive abilities. It was simply a situation where the brain had died but modern medicine had found a way to keep the other organs activated. Now, while I am rather fond of my lungs and my heart, I was not inclined to think that having a few functioning organs was enough to make someone alive. I mean, you need intact brains to be alive, right? At least, that's what I thought. Well, it happens that the situation with PVS is a lot more complicated than what was taught in my professor's class. If you find that hard to wrap your brains around (no pun intended), then tell me what you think after reading about Ahad Israfil.
None of our textbooks mentioned the idea of disability prejudice. Looking back on it, I have to wonder why that is. It's not as if people with disabilities don't talk about it. Maybe the problem is just like all other types of prejudice--there's a certain class of people who can afford to ignore its impact on others. What does it mean that the only philosophers we read about were men (e.g. Kant, Singer, Hippocrates) and the majority of the women we mentioned were the patients who were having these medical decisions made for them by others (e.g. Nancy Cruzan, Karen Quinlan)? What does it mean that none of the philosophers were people of color or people with disabilities?
This course was required for all students in the biological sciences. We were the people who would go on to be doctors and nurses and physical therapists one day. Yet, it was being taught by social sciences professor. Perhaps if the class had been led by, say, a person with a background in neuroscience, we'd have come away from it with quite different opinions.
Since I took that class, and now that the hysteria behind the Schiavo case has died down, I've been re-thinking some of my old views. I've even gone back and taken a second look at those classic case studies. The case of Nancy Ann Quinlan is especially troubling. Even after being disconnected from a ventilator, Quinlan did not die. Instead she surprised everyone by breathing on her own. In fact, she lived for another nine years after being disconnected from a ventilator with a feeding tube being the only assistive device she needed.
For the past three months, I've been having major health problems. I can't eat. Well, I can put food down my mouth but my gastro-intestinal tract is so messed up that I simply can't keep much down or keep it in long enough to benefit from it as much as I should. I've lost over thirty pounds from this latest episode with my health. Things have gotten so bad that, a few weeks ago, I had to go and get hooked up to an IV (intravenous tube) to receive fluids via my arm in order to revive me a bit.
But what if I wasn't given fluids? Well, I'd probably be dead already. Does that count as life support? Is keeping someone like me alive by using IVs constitute the use of extraordinary measures? Most people would probably say no. But what if I also needed a catheter? It wouldn't be the first time I had one. Thanks to multiple surgeries on my spine (in order to cut away at my tumor), my ability to vacuate my bladder is not always reliable. But most of the time it works reasonably well. Does the need for a catheter and an IV mean that my life is not worth living?
A couple of hours after my second surgery, several of my family members came into the intensive care unit to visit me. They said I didn't really respond to them though. After a few of my siblings and in-laws came through and made sure I wasn't too awful-looking, they let my grand-mere come in and see me. It was her voice that woke me up from the fog. Even though I was doped up on morphine, I could hear her talking to me and I could feel her touching my arm. I couldn't do anything other than look at her though.
It wasn't until a while later that I was conscious enough to make any deliberate movements with my limbs. I couldn't talk. My brain was too befuddled to do that, but I was able to give air kisses in response to seeing them. It was all I could do to express how happy I was to see them. It was a bit frustrating because I am usually very vocal but I couldn't even figure out how to say a single word.
Thankfully, that was only temporary. What if I had stayed in that state for a while longer, like say 19 years? Lest you begin to think that Grzebski is the only one this ever happened with, here's another case of a person in a coma for 19 years only to regain their ability to communicate with the world. This sort of thing doesn't happen all of the time but occurs often enough for me to think that maybe we shouldn't be so quick to pull the plug on people just because the individual isn't able to prove to us that they are conscious of their surroundings.
When people like Jan Grzebski suddenly start talking after being silent for nearly 2o years and they are able to prove that they were aware of their surroundings the entire time, shouldn't we reconsider the idea that we are putting people out of their misery by withdrawing basic care like food and water? If living with a feeding tube and a catheter was all it took in order for me to live long enough for my daughter to graduate from high school, go off to college, or welcome her first child into the world, I'd consider myself fortunate.
Sure, if someone who knows all of the facts decides that they would still prefer for doctors not to ever attach them to any sort of "life support", then I think that should be respected. We all have a right to bodily autonomy. At the same time, there are plenty of cases where the person has not stated that they would prefer to die. In fact, there are even cases where the person has expressly stated, time and time again, that they do not want their treatment to be withdrawn. The case of Andrea Clark should scare every single individual who has ever even stubbed their toe in the state of Texas. Should we really be in the business of deciding who's too miserable to enjoy or even appreciate the life they have?
For interesting additional information you might want to check out these sources:
Complaints and Disorders: The Sexual Politics of Sickness
by Barbara Ehrenreich and Deirdre English
Classic Cases In Medical Ethics: Accounts of Cases That Have Shaped Medical Ethics, with Philosophical, Legal, and Historical Backgrounds
Video footage of Ahad Israfil before and after reconstructive surgery
The Boy With Half a Brain
Not Dead Yet
Compassion & Choices
formerly known as The Hemlock Society
Thursday, June 21, 2007
Tuesday, June 19, 2007
You see, up until about two years ago, I was a member of a cult. I was born into a family where almost everyone was a member of this religious group that dictated almost every aspect of our lives. I'm not using this label casually. Cults kill. Sure, they may not wield any guns but when you're working with true believers, you don't need to get your hands dirty in order to control people's lives. I was fortunate. I was removed from approved status with the organization because I am a serial fornicator.
Back in the crazy nineties, when I was a teenager, I had sex. When I became pregnant (a situation that could have been avoided if it had been possible for me to be honest with my parents about being sexually active), I had to go and confess my sins to the church authorities. Because I was young and showed sufficient penitence, I wasn't kicked out of the religion completely. They imposed several restrictions/punishments but allowed me to remain a member while I proved to them that I was willing to be obedient to their direction.
A few years ago, I received my cancer diagnosis and needed immediate treatment in order try to extend my life a bit. During the radiation therapy and subsequent surgeries, I was unable to care for my daily needs nor could I handle those of my elementary school-aged daughter, so someone had to be there to do it all for me. My life partner stepped in and became my full-time caretaker which necessitated his move into my apartment.
Now, it's not like we asked for this to happen. It wasn't my choice to have to ask someone to be there to pull up my pants when I went to the bathroom and I think common sense should tell people that when someone has a fifteen inch slit down their back, it's going to be impossible to engage in anything the average person might consider to be sex. Even stretching out my arms in the normal motions needed to put on a shirt could have opened up the surgical wounds and exposed my spinal column. However, to the organization's leaders, none of that was relevant. I was living with a man who was not married or related to me, ergo I was a fornicator deserving of ostracism from everyone who wished to remain a part of the religion.
Even after they made this announcement to the entire congregation, I still wanted to work towards bringing my life into alignment with the groups' expectations and regain my former status as a member in good standing with the organization. However, that never happened. Instead, I became a feminist.
I began to see that I had been a victim of clergy abuse. Never again will I sit in front of a group of men and answer to anyone about the details of my sex life. You simply can't convince me that these guys weren't getting their jollies off while convincing people that they were only doing it because God commanded them to. Thankfully, I found feminism before my daughter reached an age where they could warp and abuse her too as they surely would have had I remained a part of the cult.
However, as empowering as my post-cult life has been, I still find myself yearning for some sort of connection with the divine. I know there are some folks who've had similar experiences and sworn off of religion altogether but maybe I'm a glutton for punishment. I've really wanted to believe that just because I had one truly horrific, quarter of a decade-long association with a group (whose name I am reluctant to use here due to the harassment that I've seen others subjected to online), that doesn't mean that all organized religions are evil.
A couple of years ago, my life partner met a guy at work who was the pastor that had relocated to our city in order to build a local congregation of an association of churches that originated back in the seventies out on the west coast as part of the Jesus Movement. When my partner was invited to speak to the people at his work place about how the United Way has helped our family, the pastor came to him and asked if we'd mind if he put us on his church's prayer list. Later on he invited us to visit his church and we eventually decided to do so.
Since then, we've visited several times, enough times for me to begin to feel like I was a part of the congregation. I never did agree with everything they taught but the great thing about them was that they didn't require you to do so in order to be accepted as a part of the church. It was one of those "Come as you are" places where even the pastor wears jeans most Sundays.
Coming from a religion that raked in millions of dollars every year and sent missionaries to witness in impoverished countries across the globe but never saw fit to build so much as a single school or water pump in any of them (an injustice that always reminds me of an article that I read on The Onion last year), I loved the fact that their ministry work was focused on feeding and clothing the poor and homeless. Every three weeks they go out to the FEMA trailers where thousands of displaced New Orleanian victims of Hurricane Katrina are still living and feed anyone who wants to come and get a hot meal or two and then take some food back to their trailers for later. They also bought and renovated a house where they provide housing and employment to guys who are trying to reintegrate into society after stints in drug rehab centers and/or prison.
I thought I'd found a place that reflected most of my values. Though my partner and I have very different religious and political philosophies, I thought we'd finally found a place where we could go without either of us feeling totally offended and out of place. Just when I had become fairly comfortable and settled in, things took a turn.
One Sunday, the pastor was in the middle of a sermon about how we should not condemn others since the Bible doesn't spell out absolutely everything we should believe. He goes into this spiel about how, during Bible times, some of the Jewish Christians used to criticize Gentile Christians who didn't get circumcised or follow kosher dietary restrictions. Then he talked about how the Jews were wrong because they should have recognized that the Gentiles didn't need to do any of these things and the Gentiles were wrong because they weren't acknowledging the fact that the Jews were and are God's chosen people. In fact, he added, as Gentiles we are commanded to pray for and support the state of Israel even today.
Okay, he didn't exactly say that this means we're supposed to be okay with everything that the Israeli government does but I know enough about Christian Zionism to get nervous when I hear this sort of talk. I made up my mind to give the guy the chance to explain exactly what he meant by what he said before I just wrote him off.
Not long after that, I was in a conversation with one of the guys at the church about whether Christians should carry guns and fight in wars. Though I didn't know it, the guy I was talking to used to serve in the U.S. Navy. He didn't see anything wrong with participating in wars. My view was that it would be immoral to do so for many reasons, the fact that innocent people are always killed being a very important factor for me. The pastor of the church overheard us talking and remarked that fighting in the military was a part of being obedient to our government so Christians needn't worry about that.
I tried to reason with him by pointing out the fact that if all Christians took that view, one could very well wind up killing their Christian brethren fighting on the other side of the conflict. In answer he stated that it would make him feel less worried if he knew that the people he killed were Christians too because he'd know that they were "right with the Lord" and had gone to heaven. He'd be a little more sad if the people he killed were non-Christians since they'd have gone to hell because they weren't "saved" (i.e. born again) before they died. This response left me truly gobsmacked.
At this point, I'm beginning to wonder if it isn't the specific religious groups that are the problem. Perhaps it's the actual religion itself. Or maybe it's just religion itself. I don't know. I used to be among those who take the Bible as infallible. However, it seems to me that no truly righteous God would really command people to do some of this stuff. So where does that leave me? Where does it leave anyone who thinks that imitating Jesus might not be a bad way to go but just can't find any justification for a lot of the actions and views that go along with Christianity?
Sunday, June 17, 2007
Wednesday, June 13, 2007
I use a couple of abbreviations that some might be unfamiliar with so here is an explanation of them:
NDN, NA=Native American
rez=Native American reservations
Fortunately for the majority of us NAs, you don't get to decide who is and isn't Native American. There is nothing that you can say that changes the fact that, like you, my ancestors were also NDNs. You may not like it, but it's still reality. If you're sick of this constant "bull" about who is and isn't NA, then why are you contributing to it? Did I bring this conversation to you or did you voluntarily come here and contribute to this conversation.
For me, there is no controversy. I have no one that I need to prove myself to. I have no desire to compete for scholarships that others need more than I do. My scholarships were merit-based. The reason you go to college on a NA scholarship isn't because our people have suffered genocide. It's because society is trying to make it seem as if these little bits and pieces of chump change are enough to compensate for the injustices that are still going on to this very day.
Do you understand the "divide and conquer" concept? Is it really me that makes you to have to compete for scholarships? If the government dealt justly with NA nations, would you be forced to rely on scholarships that you may or may not get depending on who else applies? Who created these concepts about some people being certain percentages of a particular ethnicity? Was it Native Americans or was it the government who sought to limit the number of NAs that they would acknowledge in order to weaken treaty agreements? Do you know the history of the blood quantum concept?
You may think that you could not be mistaken for any other ethnicity but you are quite wrong. What a person is interpreted as being depends more on where they are than what they look like. The features you describe are also found in MANY, MANY other ethnic groups. And we should also take note of the fact that there are many other folks who consider themselves "100% Indian" who have features that are a lot different from yours. Your features are not the same as the average Quechuan. Does this mean that one of you is not a Native American? Several of my family members have straight hair, straight noses and copper-colored skin. Does that mean they are more NA than me? Not necessarily.
You are not "the face" of many NA generations. You are just one face of many NA generations. We--those from different NA nations--have always had a variety of features. Your view of what a NA looks like seems to come from the idealized caricatures created by non-Native Americans. The idea that there is one certain NA look stems from the idea that we (all NDNs) are just the same. We are not. We are many separate groups spread out across two continents and the majority of us do not look anything like the classic "tv-indian". If you do, that's great! If you don't, that's still great! Either way, it doesn't prove that you are more or less NA than anyone else. You are certainly entitled to your opinion but opinions just don't trump facts.
By the way, this idea that the slavery of others can be considered "rent" is the very same one that Europeans used as their excuse for enslaving NAs. They took NA children away from their parents and put them in schools where they used them as slave labor in exchange for the indoctrination they were given along with room and board. I don't care if it was their school and their food. It didn't make their enslavement any more ethical or acceptable. My view is that it is an immoral thing to enslave anyone, regardless of any one's ethnicity. If you claim that it's justifiable to enslave another group, it is only a matter of time before someone says that it's justifiable to enslave the groups you belong to.
"You cry out what about the freedman who you enslaved.
This is simply a lie. You won't find any place I've ever made a statement close to this. Do you know why? It's because it's nothing I've ever said (or written). I understand that many groups have engaged in slavery throughout the millennia for various reasons. As is almost always the case in such situations, inter-ethnic marriages did take place (I don't use the word breed in reference to people because I find it rather demeaning, even if it is technically correct). You may be unhappy with the fact that most NA nations accepted the children of these unions as NAs (as they rightly should), but, as I said earlier, it doesn't change the facts. Is there any reason why other people should adopt your views about who acknowledge their heritage?
Given the near subsistence existence many NAs still experience, I can understand why you might be upset about having to compete with others that you don't consider to be "real Indians". Yet, in my opinion, the real tragedy is that any NA is stuck in a situation where education is only possible when and if some other group decides to throw them some scraps and bones in the form of scholarships that aren't even numerous enough for all NAs who reside on reservations. Of course, if rez NDNs weren't kept poor by a government that refuses to honor the hundreds of treaties it made, then folks might have the opportunity to expend more energy on obtaining some kind of meaningful reparations for the injustices suffered by both of our NA ancestors.
I won't ask why you're so upset and I don't consider you long-winded--certainly not in comparison to me, at least! Your anger is justified. You and other rez NDNs should, in my view, be the recipient of NA scholarships before any person who isn't experiencing the sort of economic hardships that you must deal with. At the same time, I am happy for anyone who doesn't just deny their NA ancestry because someone else wishes they would.
Sure, some people with "not too distant NA grandmothers" may not have the same experiences as you but then there is more than one way to be an authentic Native American. I have known plenty of rez NDNs who have made a concerted effort not to learn anything about their heritage. I have also known plenty of NDNs who never lived a day of their lives on a reservation but have devoted decades to the preservation of NA customs and traditions. Which one is more NA than the other? Is it determined by whatever you think? Is it determined by the racist and unscientific, European-created blood quantum nonsense? Is it determined by how economically advantaged or disadvantaged their family is? None of those things by themselves define NDNness and some of them don't contribute anything meaningful when trying to determine a valid definition for it, in my view.
Personally, I don't put any stock in percentage game because I've taken the time to figure out how it came about and how it was carried out. I think that at least part of the NDNness definition has to do with how much one really cares about the preservation of NA cultures and the hardships faced by those NDNs still alive today. I think that it also has to do with how much you know about your heritage. Of course, actual NA ancestry is part of it but that's something that can't be quantified. Culture, life, identity--it's just much more complex than any one government or individual can fully account for.
Sunday, June 03, 2007
I'm still sick. I hate the word "sick". What does it mean really? In a way it just amounts to whatever set of conditions I'm experiencing right now. I could label every day as one where I'm feeling sick. Still, there are definitely periods where there is substantially more stuff going on with my body. Like right now, for instance.
I got on the scale yesterday. About two years ago we invested in a fancy, super accurate scale so that we could keep up with our bodies while The German and I were beginning an attempt to start eat more healthily. But I try not to get on the scale very much because I don't want VanGoghGirl to develop any unhealthy attitudes about weight. Well, I got on the scale just to check in because I was just sure that I had gained weight.
I'm still having trouble keeping my food inside me for very long. If I don't throw it up, my body decides that it will just have to get rid of it through the other end. I hope other people don't think that this is too gross to actually write about. This is my reality right now. Anyway, regardless of all that, it had seemed to me as if I'd managed to keep in a little bit more food in the past week. Evidently I was wrong.
I've lost even more weight. I guess I should have realized that before I got on the scale. Around the house I almost always wear muscle shirts. I don't have enough breasts to need a bra so a nice-fitting muscle shirt usually keeps "the girls" supported enough. I have on one right now and earlier this morning I was thinking that maybe it's time to get some new ones because all of the stretchiness had gone away in my favorite salmon-colored muscle shirt. Now I'm realizing that it isn't that the shirt isn't as stretchy as when I bought it. It's loose because I'm thirty pounds lighter than when I bought it.
In the past few months I'd still been wearing my regular jeans and t-shirts when I left the house but I had to start wearing a belt, which I'd usually only do when I want to look really dressed up. After a while, even with a belt, they began to look as if I were wearing MC Hammer pants. Thank goodness I have held on to my old jeans!
I actually had to go in and get a pair of my jeans that I bought in my college days and put them on--as you can see, I care nothing for what's fashionable when it comes to clothing. The jeans actually fit! This is so-oo-oo not good. I mean, there's the undeniable little thrill of being able to say that I can still fit my clothes from my "young and sexy days" but then there's the grim reality that the reason why I can fit them is because I am sicker than I've been in a long time. Still, the fact that I was able to sit in front of the computer and write this may mean that I'm going to get better soon.
Friday, June 01, 2007
Why am I still here? I know other people in this family have to be wondering the same thing. I know it might sound bad but one of the consolations I've felt is that, because my cancer couldn't be cured, at least I wouldn't have to experience of dealing with the deaths of those I love. I know that's not realistic. People die every day. However, you'd think that the girl walking around with lupus, cancer, asthma, schizophrenia and chronic depression would have a pretty good shot at making the top of the grim reaper's list of things to do on any given day, at least before a guy who managed to survive harrowing Vietnam War experiences and a life that was perfectly healthy throughout the pregnancy and through it's rather easy transition into the world less than two months ago.
Yet here I am. They had to hook me up to the IV-line a couple of weeks ago. Why is my stomach rebelling against everything I put in it? I tried to eat a granola bar today. That was a very bad move. Sometimes eating feels worse than just going without. I wonder, is this how it starts? Is this how it begins to feel as you reach the point where life just becomes so uncomfortable that one would rather just let go?
Honestly, I couldn't even let go now. There's been too much death in this family lately. It just isn't a good time. Some people may think that there's no such thing as a good time to die but that just isn't true. Some times are definitely better than others. Dying on the same day as someone in your family's birthday--bad idea. Dying during any major holiday period in one's culture--bad idea. You get the picture? Sometimes people die on days that make it nearly impossible, or at least very difficult for the living to go on enjoying life. It's best if deaths are spaced apart rather evenly. Everyone deserves their own little space of time for people to mourn, grieve, party, or do whatever needs to be done to commemorate the passing on from this life.
I've written as much as I can for today. I'm not able to deal with being my usual cynical self, right now.
HopeSpringsATurtle suggested that I just take things one moment at a time. I think I'm going to do that right now and do what's best for me now--three thirty one in the morning on June first--I need to be some place other than in front of this computer blogging. Maybe three thirty two will be different.