Saturday, December 20, 2008
I was okay living without power for the first 24 hours or so, but after a while it got kind of old, and I speculated about whether there was anyone whose house I could stay at if they had power. Locally I have one friend and one person I don't quite call a friend. I thought of them, and I discarded the idea of calling them to see if they had power and a place I could stay. The options that I saw before me were: living in my cold, dark apartment, living in my office, going to the Red Cross shelter, staying in a hotel, driving two hours to my mom's house, or driving two hours to my dad's house. I chose living in my office.
I thought back to Sept. 11. It didn't personally affect me, but they closed work early that day. What to do with myself? I was feeling edgy because of the events of the day, so I didn't really feel like going about my normal activities, whatever they might have been. I checked with my two friends, and we decided to go for a hike. I think it was a good way to spend the occasion -- to be with friends, and to do something that reminds me of the beauty in the world.
The people who are in one's life are the people one instinctively checks in with and makes plans with whenever such an occasion occurs. And I spent the power outage alone because there was no one locally that I felt like checking in with.
A few days later, the aforementioned person I don't quite call a friend said next time there's a power outage, call him, and I can stay at his house if he has power. But the thing is, I knew it wasn't true. Maybe he and I both want it to be true that I could call him, but the truth is, I can't. Because I expect that his most likely response would be along the lines of, "Oh, there's a power outage? I didn't know. I've been in Vermont on a ski trip with all my friends. We'll be back the day after tomorrow." That's his lifestyle. It's full. Most likely, at any given time, he is busy doing something and doesn't have room for whatever I would need. I can't call him because I can't take yet another reminder, after the thousands I've gotten already, that he always has more important things to do than be there for me. And he can't take it either -- it would make him feel guilty, and less comfortable about me.
First I went to a conference. Then my landlord decided to paint my apartment. It was a lot of work to pack up all my stuff so the painters could paint. Then came Thanksgiving break. Four days in a row off from work. I was feeling so worn out, and really looking forward to having those four days to rest. I also wanted to spend the time putting my apartment back in order after the painting. The first two days of Thanksgiving break, I got some things done, but also felt really worn out and felt like I was coming down with something. On Saturday, I came down with it. I was in bed with a fever and cough Saturday through Wednesday. Thursday, one week after Thanksgiving, I got up and returned to my normal life, but I was still weak and coughing, and even now have not fully recovered.
Then last weekend, we had the power outage. That was also wearing for me, running around town looking for food and shelter, going back home to check whether the electricity was back, and when I found that it wasn't, packing up some stuff and going somewhere else. I slept one night in my office. It was not the restful weekend I needed.
This week, having not had a restful weekend, I felt all week like I was at the point of collapse. Monday night after work I got groceries. Tuesday night I went over to my friend's house to write Christmas cards. Once those obligations were out of the way, I rested as much as I could on Wednesday, Thursday, and Friday evenings. I had a lot to get done, but I knew I was too much of a wreck to be productive. I felt raw and worn and tearful.
So the past few days, when I got home from work, I retreated to the cozy comfort of home -- reading novels, watching TV, drinking herb tea, wrapping myself in blankets. And now it is Saturday. I'm not recovered yet, but hopefully I can get enough rest in the next few days to start feeling like a normal person again.
I'm taking the next two weeks off from work to visit my family for the holidays. I figure I'll be home Saturday through Tuesday doing all the things I need to do, and then leave on Wednesday. I don't know if four days is really enough. Here is my agenda for those four days:
- Get rested, so I stop feeling so raw and worn and despondent.
- Prepare for and do a radio show.
- Revise and submit my article about folk music.
- Apply for the class I want to take next semester, withdraw from the program I've been taking classes with, and figure out about my future studies.
- Put my apartment back in order. Since I move things for the painters, it looks like a tornado hit it.
- Make sure all my bills and other such things are taken care of before I leave for my travels.
- Go into the office to take care of all the loose ends at work before I leave for my travels.
- Finish Christmas shopping and wrap Christmas presents.
- Finish sending Christmas cards.
Friday, December 5, 2008
In American Dreamz, I felt that Tony Yalda stole the show, though he played a caricatured minor character. He was just so full of life. I wanted to see more of him.
When I see a soap opera I'm not familiar with, it still looks the same way soap operas always did: melodramatic plot lines trying to make up for weak acting, weak characters, and weak sets. But now that I've come to know General Hospital, I look at it in new ways. I am awed by the complexity of the history. A relationship between some people was said to parallel the relationship between their parents about 20 years before, and that wasn't just something made up for the story as it would be in a movie, it was something that actually happened on the show 20 years ago. And can you imagine what a challenge it must be for the writers to write five episodes a week, and for the actors to learn lines for five episodes a week?
When relationships change, when a new love interest develops, things evolve over time. One thing I've complained about in primetime shows is that it's just like boom, person X loves person Y, and you don't see any reason for it other than because the writers thought it was time for a new love interest. In General Hospital, you see the bonds gradually growing, the bonds devolop first, before the love interest is declared.
Soap operas are supposed to have bad actors. It's true I'm not terribly impressed with Maurice Benard, but it was Bradford Anderson's ability to exude his character that first drew me to the show, and now I find that Sarah Brown and Kirsten Storms sparkle.
Thursday, December 4, 2008
The past few nights, I'd go to bed early because I was too tired to do anything else, but then find I wasn't sleepy. Last night I went to bed at 7, but it was too early. I tried again at 8, and had no trouble sleeping then. I slept until about 7:40am. After sleeping nearly 12 hours that night, I then napped during the day 11:30-2 or so. I was drifting in and out of sleep during that time, so I wasn't really fully asleep the entire time. With all that sleep, it's not that surprising that I'm still awake now after midnight. It is surprising that I am forming coherent words. I have not done much of that these past five days. Maybe I am getting better.
I have been eating about 1 1/2 - 2 1/2 meals a day. I have not been hungry, and it takes a lot of energy to go all the way to the kitchen. I try to make myself drink water, because I know it's good for me. But mostly I'm not interested in eating or drinking.
My abdominal muscles are sore from all the nose blowing and coughing, but they only hurt when I use them.
I am supposed to take albuterol when my lungs are clogged. I took it once. Going down it irritated my lungs, giving me a coughing fit and causing me to gasp for air. Then after a little while, it had its usual side effect of making my feel shaky.
Friday morning, the last day I was functional, I took a shower and got dressed. I put on my pajamas Friday night, and did not leave them until Monday night, when I took a shower and changed into a different set of pajamas. Now I've been in those for over 48 hours.
Sometimes when I'm awake, I watch TV. Watching the news or watching reality TV reminds me that there are a lot of people out there I want nothing to do with.
I feel guilty about missing work.
There is so much to be done in the world. Beauty to be enjoyed, people to be loved, communities to be nurtured. Every day that I'm here in my cocoon is a lost opportunity to be out there living. But I don't feel too sorry for myself. I remember how other times I've looked upon illness as like being in a monastery. A time for quiet. A time for realizing what is important in life. That's not a waste.
Sunday, November 30, 2008
Thursday, November 27, 2008
- My family: They have the traits I value, such as having a respectful, nonjudgmental attitude toward others, not being pushy, and living according to their values. Their paths are diverse, but all are true to who they are rather than conforming to convention, and they encourage others to be true to who they are as well.
- My job and financial stability: Some people who make more money than I do complain of low salaries, but I think I am lucky to have my income. There are so many people in this world who have less than I do. Many of them are hard-working, smart people, and it is just a fluke of luck that I am able to have the things I do. Some people more talented than I am are unemployed. I have been unemployed in the past, and I'm lucky that I have a job now. My job allows me to have a spacious apartment and a car that runs well. Some people would consider a 12-year-old compact car not to be luxurious, but to me, it is. I am fortunate to be from a modest upbringing, so that I don't feel I need a more expensive lifestyle. I can afford to buy groceries, and not just the essentials, but I can spend extra to get the things I want, like organic foods. My job also allows me sufficient vacation/sick time.
- Health: It's not perfect, and it does prevent me from doing some things I used to enjoy, but overall, I'm getting better more than I'm getting worse, and I'm able to work full-time, take care of myself, and do a few extra things too. A lot of people don't have all that, so I'm really fortunate. And I think that being sick changed me by making me appreciate the substance of people rather than appreciating people just for being willing to gallivant with me.
- My town: I like living in a town that's not a big city, but not the middle of nowhere either. I like that we have a good farmer's market and so many independently owned restaurants and stores. So many other towns are just full of chains.
- Radio: I'm lucky to be a member of a radio station. I like listening to all the new music, and figuring out which songs go together as I prepare playlists. I like talking to Harry on and off the air. I appreciate the people at the station who have been kind to me, such as the other folk DJs, Sean, Mario, and Rich.
- Clearwater: I'm grateful to have the opportunity to volunteer at the Clearwater festival each year. I like being in a community that shares my values and being in a beautiful outdoor setting.
Thursday, November 6, 2008
Friday, October 31, 2008
Tuesday, October 21, 2008
Saturday, October 11, 2008
They addressed something I've noticed in real life: the way many people in my culture have a fear of paganism and equate it with devil worship. They looked at how through history, groups have demonized other groups. Over many years, I've seen many people equate neo-paganism with devil worship, and it always seemed incomprehensibly odd that people could be so dumb. It's like the people who are afraid that Obama is secretly a Muslim.
Neo-pagans are mostly Wiccan, but there are also many other kinds of pagans. Wiccans often refer to themselves as pagans (similar to how many members of specific Christian denominations refer to themselves as Christian). The book talked about the various kinds of pagans, but focused mostly on the modern American neo-pagans, especially on Wiccans.
Like those in many other religions, Wiccans use things like candles, incense, ritual words, ritual cleansing, and silent meditation to access the divine. The difference is that Wiccans focus more on our interconnectedness with nature rather than on a male religious founder and a male image of God.
I found some things that I liked. The main thing that I disagreed with was people who take things farther than I would, or take things more literally than I would. I had the same reaction that I do with Christians, "Do you mean people actually believe that this is literally true?" But you don't have to believe that certain things are literally true in order to consider yourself a pagan. I do find that a Wiccan or pagan outlook does contribute something to my spirituality.
Here are some things that I liked in the book:
I read The Story of Philosophy by Will Durant. This book follows the development of philosophy over many years and offers excerpts from key philosophers. Some ideas in the book support each other, but many are contradictory. As I read through the book, however, I began to get a sense of wholeness, a sense that all of the philosophers were talking about the same truths and that all of them were "right" even though they contradicted each other....It was as though I saw below the surface arguments and surface contradictions and caught a glimpse of a river that flowed through them all.Page 76:
When it comes to God, religions often get into trouble by stating that a particular idea about God actually is God. ...Those who describe and experience Deity in one way become suspect to those who experience Deity differently....When people make their ideas about God into God, they give Deity a permanent address. If the belief structure declares that God lives at 1 Almighty Drive, for example, then they will no likely look for God living even just next door at 2 Almighty Drive, and certainly not as far away as 7 Chakra Lane or on the Tao Freeway. From this perspective, if such a person encounters Deity on the Tao Freeway, then he or she must have the wrong Deity!Since pagans are often called Satanists, there was an entire chapter about Satan. One thing that I found interesting in that chapter (p. 105) was:
It may come as a some surprise to you, that by the end of the second century C.E. and the reign of Marcus Aurelius (161-180), most Roman philosophers were monotheists. Although Deity was addressed by many names, the hymns and anthems began to identify the Deities with one divine being. By the time of Marcus Aurelius, many Romans took for granted the unity of all gods, and demons, in one divine source. Part of what upset the Romans about the Christians was not their monotheism, which both groups shared, but their concept of Satan. As Platonic philosopher Celsus wrote in 180 C.E., he believed that Christians showed their ignorance in "making up a being opposed to God and calling him 'devil,' or in the Hebrew language, 'Satan.' It is blasphemy to say that the greatest God has an adversary who constrains his capacity to do good."Meanwhile, the things I'm reading about the scientific method in the textbook for the class I'm taking are remarkably compatible with the things I've been reading about paganism. The textbook is talking about how we don't live in a mechanistic world of simple cause and effect, but how many different things interact with each other.
- From sitting on the floor, you can reach the microwave and all three shelves of the refrigerator.
- If you don't get dressed all day, that saves the energy of putting on pajamas at night.
- If you don't put in contact lenses all day, that saves the energy of taking them out at night.
- If you don't eat much because it's too much work to prepare, that saves the trouble of washing the dishes.
Thursday, October 9, 2008
But now it's the 5th day of being out of that phase.
Yesterday I took a vacation day. I meant to get stuff done -- homework, laundry, groceries. No such luck. Did not get out of my pajamas. Did not put in my contact lenses. Did not take a shower. Did not pick up the mail.
I read Arrow's Flight by Mercedes Lackey. In it the main character, Talia, was losing her grip, having a hard time doing the things she was supposed to do. But there was no one she trusted, so she just kept it to herself and tried to pass for normal. Reading that on a day when I was not healthy, I identified with that. I've found that talking to people usually just makes things worse, so I just go through the motions of being a normal person.
Sunday, October 5, 2008
The seasons also represent life on a shorter scale, the ups and downs we go through on our journey through life. For the past two and a half years, I have been in winter. A time to stay in, a time of solitude and introspection. At first, I tried to find my way into summer. Every time I thought I saw a way, I'd leaping into it, running around outside in my shorts, and getting frostbite. Now I've learned to stay inside and enjoy what the winter has to offer. It's a time of productive introspection, a time of peace and serenity.
1) In my regular life, I operate as if I expect no one to like me.
2) When I imagined expecting everyone to like me, the biggest thing I noticed was that feeling not sick/not tired was a key ingredient of it.
The fatigue that has been on me since mono is sometimes like walking around carrying a refrigerator on my shoulders. I can pass for normal, i.e. I go to work and get my groceries, there's just this invisible fridge constantly weighing me down.
Except I've been getting better, and right now there is no fridge. Right now, I'm a bird soaring in the sky. With a fridge on my shoulders, it takes all my effort just to put one foot in front of the other. But now that that weight is lifted, I can fly. I can transform into that person who expects people to like her. I can engage in healthy activities, like learning, thinking, creating, and rollerblading.
I have actually been healthy for a little over a week now, since I went to the naturopath the Thursday before last.
The sense of happiness and well-being is something that I usually get when I'm on vacation. I get it visiting my mother or visiting my father. I got it at the Clearwater festival. I got it visiting Daisy in Venezuela. I got it going to Maine by myself. And that's most of the vacations I've been on in the past four years. I also got it a week ago. That day I went to the garden, rollerbladed and talked to Daisy on the phone.
The happiness and well-being can come without health. Well, maybe not when I'm feeling regular sick, but if it's just a matter of the post-mono lack of energy, that's okay, because I can be happy spending a cozy day reading indoors.
Today my sense of happiness and well-being emerged when I finished rollerblading. It was further nurtured when I went to the radio station afterwards. I enjoyed listening to music, being around people, and talking to Harry and Rich.
Saturday, October 4, 2008
Culture: I live in a Christian culture. Although my Christian culture views pagans as evil and has spent centuries trying to eradicate paganism, elements of paganism are actually still entrenched in my culture. We see them in Christmas, Easter, Halloween, and May Day traditions, and in the names of our months and days of the week. We also see paganism in our culture's fantasy novels. As someone who reads fantasy novels, I am accustomed to finding paganism in most of the fiction I read.
I grew up Quaker, not all my life, but from mid-childhood through college. There's also a less obvious, but more powerful way that Quakerism influenced me. My values were influenced by how my mother raised me. My mother's values were influenced by the way her mother raised her. My mother's mother was brought up in a Quaker family. Even though my mother was not raised Quaker, she was raised with Quaker values, because she was raised with her mother's values, and she passed those values on to me. Transmission of values through my family is what made me feel instinctively that certain things are right or wrong. The education provided by Quakerism is what gave me a conceptual framework to understand the meaning of these values.
Theology: I am a universalist. I believe that there is some indescribable something that is too abstract for us to understand directly. Religions are different ways humans have of making something concrete which helps us glimpse that which is abstract. Religions are human constructions and susceptible to corruption. As I've written in two recent posts, the way they often go wrong is that people believe the religion is the end itself, and they become devoted to the religion rather than using the religion as a telescope to see what is beyond. To me, this is idolatry.
Some people would call me a nontheistic. I don't believe in the reality of an anthropomorphized God or gods. I do believe that these anthropomorphized gods can be a part of what I described as "making something concrete which helps us glimpse that which is abstract." But the idea that there really are actually beings who control what happens, appear to us in visions, or send us signs, is just not true in my belief system.
However, I don't think of myself as a nontheistic. Talk of God makes sense to me, it's just that my conception of God is different. What I believe in is a sort of magic (but not really magic) sense of connection between everything. It makes sense to me when Christians say, "God is love." What I believe in is described in Joe Crookston's "Sylvan Song." Here is just a part of the lyrics:
It's in a baby when she smiles
It's in the sugar of a maple
And in the silence of a hawk
It's in your mother and your father
It's also expressed in the concept of "ambient magic" in Tamora Pierce's Circle books. In these books, magic can be found in everyday objects and chores, and can be accessed through meditation, as well as through connecting with other people.
I don't literally believe in magic, any more than I literally believe in a God who talks to people and controls things. When people say, "It was God's will," or "Leave it in God's hands," it makes sense to me because I understand it metaphorically rather than literally. I don't think there is an actual dude doing things. What it means is that there are times when we have to accept that there are forces at work in the universe beyond our control. These forces are not gods deciding how things out to be. These forces are things like the free will of a billion individuals, and the laws of physics.
The sense of magic, or sense of connectedness, is a state of mind, it's something that exists in our neurons. We evolved to have a sense of spirituality because having it helps us work cooperatively with our fellow humans and helps us use the earth in a sustainable way. Because we evolved to have a sense of spirituality, we feel healthier and make better choices when we nurture that sense of spirituality. However, there is diversity among humans. If someone does not have a sense of spirituality, then there may be no benefit for that person to be religious.
There are people who see everything in black and white and who think everything must be logical and rational. To these people, religion does not make sense. These people would say that I am a fuzzy thinker because I say I believe in a magical spirit pervading the world, yet I also say it's all just an illusion in our neurons. Carol Gilligan's In a Different Voice was an important work because it made the case that those viewed as fuzzy thinkers by dichotomous thinkers are not necessarily less intelligent. In my opinion, reality is complex and no one can fully understand it, but those who come closest are those whose brains are big enough to hold ideas which seem inconsistent with each other. In The Structure of Scientific Revolutions, Thomas Kuhn says that scientists work assuming that a certain model is true. A scientific revolution occurs when a better model is found. The fact that these models keep changing shows that our current understanding may not be a perfect representation of reality. However, Kuhn has found that research done under one model results in findings that are still useful under a new model. Moreover, science is able to make more progress working under a model than working without a model, even if the model is eventually proven to be flawed. I think that's why seemingly contradictory ideas can both be valuable. The two ideas come from two different models. Neither model is a perfect representation of all of reality, but both models are useful in helping us get closer to understanding reality.
What religion am I? I've found three religions that have some commonality with my theology and culture: Quakerism, Unitarian Universalism, and neo-paganism. All of them fit my culture in some way, but let's take a closer look at the extent to which each fits my theology, values, and rituals.
The fundamental belief in Quakerism is that there is that of God in everyone. That fits with my theology. However, Quakerism overall tends to be more Christian-oriented than I am. There are Quaker universalists and Quaker pagans, so perhaps I'd find my niche with them.
Quakerism is the strongest fit with me for values. Sometimes with Unitarian Universalism and neo-paganism, I note that some value that I hold strongly is absent. People in these traditions may agree that it's a good value to have, but they just don't hold it strongly as a core of their religion the way the Quakers do.
Quakers fail to inspire me when it comes to rituals.
My theology is consistent with the UU seven principles and six sources. However, I feel they don't represent my values as strongly as Quakerism does. I think they do better with rituals than Quakers, but there is still something lacking when it comes to rituals.
I have firsthand experience with Quakers and UUs, but I mostly know about paganism only through reading. Whether dealing with Christians or pagans, I want a religious community that doesn't take things too literally. Some pagans believe in weird stuff, just like some Christians believe that we got into this mess because a talking snake convinced a woman to eat an apple. But there is room in paganism for many different beliefs, and some beliefs are more consistent with mine. My concept of God as being a spirit of magic and connectedness seems to fit with paganism. I like the way pagans are close to nature. I like that their holidays are based in the passing of the seasons. Their rituals do appeal to me in a way that Quaker and UU rituals don't. I like their values, but still feel that Quakers are the strongest match for my values. I think I need to get some more experience with pagans to find out how compatible they are with me in terms of theology, values, and rituals.
I need to get more experience with paganism before I can really come to a conclusion. I currently think that many things about paganism will fit me, but Quakerism seems to be the strongest fit for my values. There is such a thing as Quaker pagans, so maybe the answer to the question "what is my religion?" is Quaker pagan.
Perhaps many people find it hard to find a religion that matches them in theology, culture, values, and ritual. I get the impression that many people attend church to get the ritual, but don't agree with the theology of the church offering the ritual. It seems that our mainstream religions haven't kept pace with science. According to Episcopal Bishop John Shelby Spong, it's time for a new reformation.
The modern, not particularly religious people have their characters too -- superheroes, game characters, actors, athletes.
It seems to be a part of human nature to create a cast of legendary characters. I think it's okay if religion does this. This goes back to my recent post on not taking things too literally. Religion addresses that which cannot be contained by our finite, concrete world. We have to make the ideas concrete so we can relate to them, and one way of making them concrete is to make up a cast of characters. It's good as long as we remember they are just pointers to what is beyond. If we start thinking that the characters are the gods themselves, then we have become corrupted into idolatry.
Friday, October 3, 2008
- Theology: Religions are based on certain beliefs related to the existence of one God, of many gods, or of no gods.
- Values: Religious beliefs may cause people to give food to the hungry, refuse to participate in war, or kill doctors.
- Culture: Religion is a cultural expression. A religion that shares my values and theology but comes from a different culture will not fit me.
- Ritual: Religion provides us with activities that help us get closer to a state of mind in which we are inclined to act in accordance with our values, and away from a state of mind in which we act out of self-indulgence.
We can do rituals on our own, but often rituals that take place within a religious community are more inspiring than solitary rituals.
I've heard it said that Unitarian Universalists are ridiculous because they go to church and do Christian rituals but they don't actually believe in Christianity. People think it is silly of them to be going through the motions of something they don't believe in. But I don't see it that way at all. Their theology is different from that of traditional Christians, but they come from the same culture, so it makes sense that their rituals are similar.
Similar rituals can serve people of different theologies. Meditation, prayer, chanting, singing, dance, yoga, and lighting candles can all be spiritual expressions. They all get people to that spiritual place, it's just that different people find different theologies and values when they get there.
Thursday, October 2, 2008
Wednesday, October 1, 2008
The problem comes when people take the guideposts to be the destination. We need finite representations to help us find the way, but we should not treat the finite representations as the end goal. To do so would be idolatry.
A religious message is a finite expression of an infinite idea. Religious messages need to be understood as metaphors for that which can't be made concrete. They should not be taken literally. When they get taken literally is when the damage ensues. Religion gives us some guidelines for how to live in order to get in touch with the infinite. Different religions have different guidelines. Even though the roads are different, they all have the potential to get to the same place. But when people take the guidelines too literally, they end up losing the core message that the guidelines are supposed to lead to. The core message of religions is to treat other people with love. When people start taking the guidelines as an end in themselves, they end up condemning people who don't follow the same guidelines, and sometimes doing violence to those people as a way to save the world from the evil infidels. When they do this, they are acting against the core message that the guidelines were supposed to get them to. That's why idolatry is wrong, because if you make the guidelines into the end goal, you end up violating the thing that should have been the end goal.
It's also bad when anti-religious people take religious messages too literally. If they think the religious messages are supposed to be literally true, then when they see that they can't be literally true, they say that religion is just all ridiculous and wrong. In the movie Religulous, Bill Maher says to a Senator who admits he believes in the story of the Garden of Eden, "It worries me that people are running my country, who think, who believe in a talking snake. " I guess there are actually people who do believe in taking the Bible so literally. But I don't think it should be taken that way. I think it should be taken metaphorically. A story doesn't have to be literally true in order to convey a valuable message. When people think that religion can only be understood literally, and then reject it as ridiculous on those grounds, to me it's like they haven't even seen what religion is supposed to be. Speaking of metaphors, here's an example: Imagine you have a recipe for muffins that says bake for 20 minutes. You bake for 3 minutes. Then you taste the muffin and you find it rather wet. Based on this, you decide that all muffins are terrible, and anyone who eats muffins is a fool. But you haven't even seen what muffins are supposed to be. That's what it's like with some people who reject religion -- they look at the way people have incorrectly interpreted religion, and when they don't like what they see, they reject all religion on that grounds.
Sunday, July 20, 2008
- If it doesn't fit the mold of any diseases they know, or if they can't find a physical cause, they say that there is nothing wrong with you. When I was in fifth grade or so, I was taught that menstrual cramps are all in your head. Around sixth grade, the doctors found a physical cause for them so then they decided to believe in them. Couldn't they have believed in them based on the experiences of generations of women?
- They want you to fit their pre-determined symptom categories. I've had symptoms which doctors classified as "muscle aches" or "shortness of breath" when those classifications really didn't describe my situation, they were just the closest the doctor could get in their pre-determined categories.
- They think that drugs and surgery are the only cures. My co-worker's doctor was considering such approaches for my co-worker's back pain, but then my co-worker discovered that things like using a different pillow and doing Nia helped her. Doctors should suggest those kinds of things before they jump to drugs and surgery.
Monday, July 14, 2008
But I can talk to Steech about it, because Steech gets it. When I tell him about being home alone thinking what if I keel over, what if I die, he tells me about he times he would make sure the phone was near his bed before going to sleep, in case he had to call 911. And he says when he thinks what if he dies, he figures, "if I'm dead, people can deal without having a pianist that particular morning, and I'm not too fussed about it." And he remarks, "I suppose, the great thing about being replaced as a species by robots is that, as robots, we can be programmed not to be tired or feel lousy."
Monday, July 7, 2008
I first met Clearwater around 1989 when I spent a week on the boat as a volunteer crew member. What struck me then was Clearwater's welcoming attitude. At the time, I was also involved with another organization which was trying to do good things in the world. However, the attitude of that organization toward its supporters and potential supporters seemed to be, "We want your money, but we don't want you to get involved because our work is so important that we can't afford to have amateurs like you messing it up." It was so refreshing to see how Clearwater welcomed people. I especially remember that when we docked, we'd invite anyone who was on the dock at the time onto the boat for a tour.
After that experience on the boat, I dropped out of touch with Clearwater for about 15 years. I had been drawn in 1989 by an interest in boats. I was drawn again 15 years later by folk music. I had been volunteering at folk concerts for a few years and I felt the next step would be to volunteer at a festival. I read on the internet about all the festivals in my region and decided Clearwater was the one for me. Not only did it have music, it also had a soul, a larger purpose. Moreover, I still liked boats.
I've volunteered at the festival four times now, and have felt the same open, welcoming attitude that I noticed when I first crewed on the boat. Clearwater actively tries to draw in people of different ages, races, and abilities. I volunteered alongside a 13-year-old this year. Too often, people that age are told they are too young to be useful, but Clearwater welcomed her contributions.
There are performers of different cultures, races, and musical styles. There is music I don't like, and that's good because it means there's a place for people whose musical tastes are different from mine.
Sometimes I feel that organizations which embrace diversity don't want me. I'm white, heterosexual, able-bodied, and not young enough to count as youth. Because I'm less experienced than the baby boomers, but don't help with diversity, I feel some organizations don't want me. However, I feel that Clearwater welcomes everyone, including people like me.At this year's revival, Magpie sang, "Give light, and the people will find the way." That captures what Clearwater is about. It's not an elite group that thinks the masses are too ignorant to do anything of value. Instead it's a group that gives light to the masses, because it believes in our ability to find the way.
Wednesday, July 2, 2008
- Have it be light outside after work.
- Be able to enjoy the fresh air wafting against my skin rather than tensing up to ward off the cold.
- Feel the grass on my bare feet.
- Walk barefoot, or wear sandals.
- Wear clothes that allow freedom of movement.
- Be outside, whether for gardening, outdoor concerts, festivals, having lunch, looking at the scenery, or anything else.
I don't believe in a God who is a guy in a white robe who lives in the sky and controls our lives like we are chess pieces. But religions sometimes say, "God is love," and that much I'll believe. I don't believe in God as a separate being. But I believe humans can achieve a spiritual state of mind, and that that state of mind makes them feel connected to other people and to the earth.
I don't believe that there is only one true religion. I believe that religions are paths to achieving a spiritual state of mind. Because people have different cultures, they develop religions which are compatible with their cultures.
I live in a Christian culture, and Christianity is a better path for me than religions of other cultures. I don't conform to traditional Christianity however. The things that many Christians take literally, I take metaphorically.
I come from a long line of Quakers. Quakers are a particular version of Christianity, and it's a version that fits me well. The fundamental belief of Quakers is that there is that of God in everyone. To me, God is that sense of spirituality for which everyone has the capacity.
Some would say I'm a humanist, because I don't believe in God as a being outside ourselves. I've heard religious Christians say that humanism is bad because it's about worshiping ourselves. I don't consider myself a humanist and I don't believe in worshiping ourselves. Humanists often don't believe in God. I believe in God, I just have a different interpretation of God than some people do. A lot of religious writings make sense to me. I just understand the God they are talking about to mean love, spirituality, the way that some things in our lives can't be explained or controlled, and a sense of magic and wonder. I don't think that this God is something that I worship. It's something that I can discover if I'm open to it.
I don't really believe people should worship anything. I saw a debate on the internet between a Muslim and a Christian. Each was pointing out inaccuracies or inconsistencies in each other's holy books. The idea was that the books are supposed to be the word of God and therefore perfect, so if there is any flaw, that shows that they are not the true word of God. To me it's wrong to place so much importance on a book. That's idolatry, which the Bible says is wrong. A book is just a collection of words that people wrote down at some time in the past. We should not idolize or worship any physical objects or rituals. God is just love, not something that can be concretely captured.
If people shouldn't worship anything, what should they do? I believe people should seek to humbly walk a path of compassion, kindness, and integrity. They should always be open to broadening their understandings, and they should seek to make the world a better place. Why should they do this? Not because they will go to heaven when they die if they do it correctly. Not because some guy in the sky will punish them if they don't. But because that's the route to feeling that I belong in my own skin. Because we evolved to feel peace of mind when we live this way, and to feel that something is missing when we don't.
Another religion that is part of my culture and which partially resonates with me is paganism, particularly Celtic. You might say that it died out long ago, so how can it be part of my culture? But we still see its influences a lot in fantasy novels. There are also pagan influences in Halloween, Christmas, and Easter. And we know May Day exists even though we don't always celebrate it. To me, being connected to the earth is a significant part of spirituality. It's partly because being in nature brings out our spiritual sides, and partly because part of being spiritual is accepting the things we can't change, and the weather and the seasons are a good reminder of the way our lives go through good times and bad times. Therefore, it makes sense to me to tie religious rituals in with the solstices and equinoxes. However, I don't feel a particular connection to any of the neopagan religions that I know of.
Some people might say I'm a Buddhist, because I don't believe in a supreme being, and because I believe in things like being kind to others, and not being driven to acquire material things. But I'm not a Buddhist. One part of Buddhism is about the importance of letting go, about not being attached to the things in the world. The outlook of Buddhism does not fit me culturally. I believe in being attached to other people. I believe the messiness and pain of caring about other people is an essential part of what makes life worthwhile. I started reading a Buddhist book, Siddhartha, and it was about how he left his wife and baby to go meditate and find truth. It was so aggravated by the way it glorified leaving one's family that I didn't finish the book. I believe that it's only through our love for others that we attain the spirit of God. And I don't mean love for humankind, I mean love for the particular individuals that you are faced with every day. That's one thing that I like about Quakerism, because we find God by looking for its spark within everyone around us.
I believe that religion and rituals are paths to attaining a spiritual state of mind. Dance, music, singing, being in nature, yoga, adopting a humble posture such as kneeling, being silent, and listening to an inspirational speaker are all potential paths. It doesn't matter which religion you choose. What matters is whether that religion works to make you more compassionate toward others, or whether it turns you into a bigot.
Some people are atheists. To me it seems sad if they do not have a sense of magic and wonder (though you can be atheist and still have a sense of magic and wonder). They would probably think that it is sad that some people are so deluded as to believe in God. And more traditional Christians probably think it's sad that I don't know their God. We all believe what we believe, and it feels like people who believe otherwise must have sad lives, but the reality is, having different beliefs doesn't make a person sad. We all believe what we believe, and we all think our beliefs are right, and others are wrong, but that doesn't mean it's true, because we can't all be right. And everyone would say "We can't all be right. That's why I'm the only one that's right." But if everyone is saying it, then the logic just doesn't hold up. So we just have to let people enjoy their own beliefs, and instead of pitying them for not having the belief that we have, we can be happy for them when they find their own paths.
Tuesday, July 1, 2008
Thursday, June 5, 2008
- The things I thought in high school when I was applying to colleges are pretty much still true.
- I was a Quaker, so I liked the fact that that Haverford was founded by Quakers and maintained a Quaker identity.
- I liked the fact that they did not have a football team or fraternities and sororites.
- My interview at Haverford was memorable because the interviewer asked so many thought-provoking questions that I was still thinking about them for days afterwards. My classes at Haverford were not all as thought-provoking as that interview, but there were intellectually stimulating moments. I think what I generally found more intellectually stimulating than my classes was talking about my classes with my friends. In particular, I talked to Kevin about sociology and to Tom about history.
- What impressed me about the campus tour was the humble, humorous attitude of the student leading the tour. I remember that the tour guide was good naturedly making fun of Haverford by saying we don't have a football team but we have a cricket team. At my reunion, 25 years after my campus tour, I still found Haverford to be humble and humorous.
- My feeling was that I liked Haverford in all respects except location. I wanted to be in New England. I thought Williams College had a good location. I still feel that I belong in New England, somewhere north of Connecticut.
- Haverford values peace, justice, equality, community, treating people with respect, and listening to others. A typical article in the alumni magazine might be about an alumnus working at health clinics in Africa. I share Haverford's values, and it really means something to me to be from a college that shares my values, even though the things people do in the alumni magazine aren't my path.
- My experience at Haverford was an experience of being part of an open and welcoming community. If I wanted to be among friends, all I had to do was step out to a public area, and people would start talking to me. Even with people I did not know, there was a sense of community and common culture, and it was normal to talk to strangers. I was part of a large circle of friends and had a handful of close friends. After feeling like a misfit without social skills in high school, suddenly I was a normal person with plenty of friends. I felt like I belonged at Haverford. Haverford was my home and my community. I still feel that way. I refer to the Haverford community as "us," and I feel a sense of connection to others who went to Haverford.
- In a class of about 310 students, a college of about 1200 students, and a bi-college community of about 3,000 students, my circle of friends had maybe thirty people in it. Who were the rest of the people? My sense is that they were not my type. They were from rich families and planning to go on to be rich grownups. They became investment bankers, lawyers, and doctors. But how can it be that I had such a strong sense of community if the majority of people there were so different from me? Were the other people closer to my values than I thought? Or was the identity of Haverford something separate from the individuals who were there? Certainly I think that people joining the Peace Corps is part of the identity of Haverford and that means something in my sense of what college I come from, even though it's not really what my friends or I are about. (I tend to be drawn to geek types rather than activist or Peace Corps types.) Could that also be the case for those who were not in my circle of friends? That even though they didn't fit the mold of what Haverford was about, it meant something to them and was part of who they are?
- I don't like the way the rich kids' attitude rubbed off on me. The attitude seemed to be "We are at one of the best schools in the country, so we must be smart. We should have fulfilling careers. Being a housewife or farmer is too boring for us." I sometimes feel that my ambitions are supposed to be more ambitious than they are.
Monday, May 26, 2008
Someone gave me a list of authors and books I might like. The first name on the list was Tamora Pierce. Since, then I've been reading Tamora Pierce books. That was two years ago. Maybe someday I'll get on to the second name on the list. It's good that I've gotten years of entertainment out of this list.
Here's a list of books by Tamora Pierce that I've read so far:
- Song of the Lioness
- Alanna: The First Adventure
In the Hand of the Goddess
The Woman Who Rides Like a Man
- Wild Magic
The Emperor Mage
The Realms of the Gods
- First Test
- Trickster's Choice
- Sandry's Book
- Magic Steps
Tamora Pierce books that I have not yet read (not all have been published yet):
- The Provost's Dog
White Tiger: A Hero's Compulsion TPB (co-authored with Timothy Liebe )
"Plain Magic" in Flights of Fantasy
"Testing" in Lost and Found
"Elder Brother" in Half Human
Young Warriors: Stories of Strength
That got us talking about the other things people always say that we wouldn't miss.
People who know of my chronic fatigue say things along the lines of "If you lived the lifestyle I live, you would be as healthy as me." They don't say lifestyle. They each have a specific thing, like if you ate more of a particular type of food or did more of a certain activity. There are a lot of people who live less healthy lifestyles than I who are living just fine, so they don't get picked on, but because my health is lacking, everyone is out to correct my lifestyle.
Another thing that people always say is that complete strangers come up to me and ask me whether or not my hair is my natural color. I can't really fathom why people think it's appropriate to go up to a complete stranger and say that.
Similarly, it's normally considered inappropriate to go up to a complete stranger and touch them, so why do people go up to pregnant women and touch their bellies?
Another response that I get to my hair color is people telling my things like, "My uncle used to have red hair, but it's white now." Why would I care whether complete strangers have red hair in their family tree?
Similarly, when people learn that what my brother does for a living is play piano and organ, they say things to him like, "My nephew used to play cello."
If you live in California, and you tell people that you are from Connecticut, they might say, "I know someone in New Jersey."
I think if you are in the U.S. and you tell people you are from Brazil, you probably get responses like, "My daughter visited Nicaragua once."
I understand that people are just trying to make a connection. It's good of them to take the risk to reach out for a connection, even though they are on shaky ground. I don't really mind if people tell me about the hair color of their relatives, or even if they ask me if I dye my hair (as long as the answer is no), but I don't really like the way some people give advice. I don't necessarily mind if people who hear my problems engage with me as a partner in brainstorming, but I don't like the attitude, "Your problem would be solved if only you did what I do."
I think that it's good for Clinton to stay in the race long enough for everyone to get a chance to vote. I don't think it's fair that people who live in states with later primaries don't get as many choices. I think everyone should have the opportunity to vote for the candidate that they prefer.
However, once that's done, I think that she should respect the will of the people, rather than trying to win through super-delegates and by counting Florida and Michigan. I think in general that everyone's vote should count, including Florida and Michigan, but it was already decided that Florida and Michigan wouldn't count, and if that's the rule that's already decided, one shouldn't tamper with it just for the sake of getting more votes on your side.
I supported Clinton, but Obama won the votes, so it's time to get behind Obama.
Sunday, May 18, 2008
Man: I've fallen down a mineshaft and I'm pinned under a log. Can you help me?
Woman: You fell down the mineshaft? But there's a sign right there saying, "Caution: Mineshaft."
Man: Well I'm down here. Can you help me?
Woman: Your voice sounds pretty close. Maybe you could just climb up.
Man: I'm pinned under a big log. There's a phone up there, can you call and get someone to help me.
Woman: You want me to call and say there's a man who fell down a mineshaft even though there's a sign right here that says stay away from the mineshaft? They'll laugh at me.
She calls, and she and the dispatcher agree that it is not really serious but the dispatcher agrees to send someone to help. It's like he doesn't really see the need, but it's his job so he will send someone.
That's exactly what it's like to have chronic fatigue syndrome. Everyone thinks it should be easy to crawl out on your own. They say you just need to do X and then you'll be fine. X may be go out more, eat a different diet, quit complaining, have a better attitude, or get religion. Your doctor knows she's supposed to go through the motions of helping, but she doesn't really see that there's a problem worthy of her attention.
I know it's far too much to expect people to say "I'm sorry you are sick. What can I do to be supportive?" but couldn't they at least keep their mouths shut long enough for me to be able to imagine that they are listening and understanding, instead of blabbering on about what I ought to be doing?
A Lot Like Love was the same as a thousand other movies. The characters were young, good-looking, confident, and articulate. Sure they didn't have their lives all together and had their awkward moments, but they acted like people in movies act, not like regular people. The awkward moments were not truly awkward but were perfectly performed comedic acting. The plot was exactly the same as any other romantic comedy: man and women meet, have some ups and downs, and the movie ends when they finally decide to be together. Such movies leave me feeling bad about myself for not having that instant chemistry with the guys I meet, and for not having any guys chasing me at all.
As formulaic as romantic comedies are, there are some that I've enjoyed to a certain extent. This one was nothing special for the most part, but there was one scene that resonated with me. The guy and girl were each feeling the pain of rejection from other relationships, and to escape it, they just got in a car and drove. At one point, they sang along to a song on the radio. It brought back to me the times I've been in that carefree mode, driving around with someone just for the sake of adventure and singing along to the radio. It brought me the joy of that experience mixed with the sadness that my life is not like that any more. The song they were singing along with was a song of heartbreak which I listened to a lot when I was younger. Again, that brought me a mix of the joy of hearing the song mixed with the sadness of the emotion conveyed in the song.
The Visitor was refreshingly not exactly like a thousand other movies. I was especially impressed with Danai Jekesai Gurira, who played Zaineb. Zaineb came across as a genuine person rather than as a movie star. The characters in The Visitor were not all young and good-looking. The main character was over 60. When people found themselves in an encounter with a stranger, they were awkward and had little to say. A wife's irritation with her husband wasn't a part of the big ups and downs you see in a typical romantic comedy, it was part of a stable relationship. A man and a woman met for the first time came in time to share some affection, but it wasn't instant chemistry leading to sex, and then the promise of happily ever after at the movie's conclusion. So many movies are about finding true love in a way that's about finding something to make you happy. This one was about coming to care about something larger than yourself. In particular, about the plight of illegal immigrants in the U.S. I liked the way they showed images such as the flag and the Statue of Liberty to make the contrast between the ideals we claim to embrace and the way people are actually treated. I liked it because they just let you see the contrast, they didn't spell everything out for you the way mainstream movies tend to.
But what I like most about Oliver's is not the food but the atmosphere. Adam is the waiter, cashier, chef, and owner. He's helped out by his mom, Diana. When you enter, they greet you warmly. The cooking area is right there, behind the counter, so as they cook, they may ask you questions about how you want your food. The seating area is small, and a busy time seems to be any time there are more than about 4 customers in the restaurant at a time. The other day when I was there, there was a party of 8, and Adam told me, "I've never had so many people in one party before." The smallness means the customers can all talk to each other, as well as to Diana and Adam. One day, a customer was on the cell phone talking to a friend, saying something along the lines of, "I'm at Oliver's Naturals. You should come join us." She said to Adam, "Want to talk to her?" and passed him the phone. At most restaurants, it is not typical for the owner to get on a customer's cell phone to talk with a customer's friend. This was a first-time customer, but she had already caught the atmosphere of the place enough that if felt natural to her to offer Adam the phone.
Too many restaurants have gone out of business, so I hope that Oliver's gets plenty of customers so they can stay open for a long time to come. On the other hand, the smallness is what makes it such a great restaurant, so I want it to stay small.
Wednesday, May 14, 2008
I think it's good to have different primaries at different times so that candidates can visit different locations campaigning. But I would suggest that they divide the country into six or eight regions, and have a primary in a different region each week. Also, the order of the regions could rotate from election to election.
Friday, May 2, 2008
My parents and most of my relatives convey that people should be who they are, should follow their own paths. It's not that they like everything everyone does, but that when others are different, they accept that they diverge from them rather than trying to define or change them. I value people who have that sort of outlook, and remain aloof from those who do not.
Thursday, May 1, 2008
Friday, April 25, 2008
Her situation resonates with me. I don't have kids, but I have been in the situation of younger people taking what they need from me and then moving on to better things. I want to find a place where I'm not something to be disposed of on the road to better things, but instead I am a better thing.
We all need to be in mutual relationships. We need to be with people who need what we have to offer and who give us what we need. But sometimes people aren't yet prepared to give, they just need to be nurtured. Parents and others take care of these people. Being taken care of may be what the person needs at the time, but ultimately, they will need to be in mutual relationships, so they will need to move on. Those of us who take on the task of nurturing those who aren't able to give back end up being in the position of being left behind. It's just one of the side effects of the job, but it doesn't mean that it's not a job worth doing.
- Time after time, you'll think that getting cured is just around the corner, whether because you have a good day, or because you start a new treatment, but then you won't be cured.
- When you feel better sometimes and worse sometimes for no apparent reason, you'll be looking high and low for a reason. You can become quite superstitious, suspecting everything that you did and everything that you ate of having an impact.
- People will tell you, "You don't look sick."
- People will tell you that it must be psychological.
- You will frequently doubt your own knowledge of yourself. With everyone telling you nothing is wrong, and you not wanting anything to be wrong, it's easier to just believe it and try to live like a normal person.
- You'll make the rounds of doctor after doctor, and every one has a different theory, a different round of tests, a different set of drugs for you to take. The ineffective tests and treatments will take a toll on your already weak body.
- You try to avoid talking to your doctor about what is going on with you, because you don't want to be saddled with more useless specialist visits, tests, and drugs, nor do you want to be told again that there is nothing really wrong with you.
- You drastically modify your lifestyle to avoid things that require energy, like having a social or recreational life, and you start to take it for granted, to think that this is a normal way to live.
- You can't have friends, because friends expect you to be able to make plans to do things with them. You can't make any plans for future days, because you don't know which day will be a good day and which will be a bad day. Except you do know most likely you'll be too tired to do whatever the other people want to do.
- The Spoon Theory gives a description of life with chronic illness, though in this case, the person knows what the illness is.
Monday, April 21, 2008
Pushing Daisies was only on for 9 episodes in the fall, and I think I only saw four of them. It is due back next fall. I call it a fitting replacement for Veronica Mars because I think both appeal to a younger, science-fiction/fantasy, light-hearted sort of crowd, while Boston Legal may appeal more to liberal intellectuals.
I like Pushing Daisies because it is funny, quirky, has good values, and is packed with stuff. What I mean by packed with stuff is that they just rattle off clever puns so fast that you may not even notice them all the first time around.
I like Boston Legal because it is quirky, hilarious, discusses important issues, and treats its characters with respect. This is a show that features a midget, a transvestite, and a man who purrs whose girlfriend left him for an iPhone, and which treats such characters with respect while at the same time taking full advantage of the potential for humor. I like the fact that there are characters in their 60's or so who are real people, people who still experience romance and friendship just like younger people do. You don't see that so much in TV and movies. I like the depth of caring the characters show toward each other. In particular, I'm thinking of Shirley's love for Denny. They dated a long time ago. She is a powerful, intelligent woman. He is losing his marbles, and something of a buffoon. He wants to get back with her romantically, and shows it in very immature ways, but she sees past that and loves him as the man who has been a part of her life for decades. Also, the friendship between Denny and Alan is the centerpiece of the show. It's rare to see a friendship between two men who will say "I love you" to each other. They're not type of people who are always talking about their feelings either, they are real men's men, they just happen to have a strong friendship. There are so many so-called comedies which to me are just boring and stupid, but Boston Legal never fails to to be funny. At the same time, it also raises awareness of important issues.
I'd also like to give honorable mention to Private Practice. It's not really any better than the average drama (e.g. Brothers and Sisters, Grey's Anatomy, Boston Public, The Practice, Northern Exposures, Men in Trees, Desperate Housewives, Picket Fences), but I like the way that the characters have been around the block a few times. These are not unspoiled youth seeking true love, whose happy ending comes when they and their love interest decide to get together. These people already found their true love, got married, and got divorced.
Thursday, April 3, 2008
Monday, March 31, 2008
I like the cartoon for the same reason I like the warning sign for the t-shirts and sweatshirts: because it really grasps what my life is like in a way that most people in my world don't. But I suppose to anyone who isn't going through a similar situation, the cartoon and the warning sign might both seem a bit pointless.
Warning!!! Things NOT to say to someone with a disabling chronic illness:
...but you don't look sick
...everybody gets tired
...you're just having a bad day
...it must be nice not having to go to work
...I wish I had time to take a nap
...if you'd get out more
...you're just getting older
...if you'd get more exercise
...it can't be that bad
...it's all in your head
...you're just depressed
...there are people worse off than you
...you'll just have to tough it out
...you just need a more positive attitude
...this, too, shall pass
(I wouldn't wish what I have on anyone but unless you get it, you just don't get it.)
I'd like to get this message out not just for myself, but because I think there are many people who have been hurt by such comments, and if I can educate a few people about what not to say, then maybe some people will get hurt a little less often.
Sunday, March 30, 2008
Last Sunday I had some homework that I felt I really needed to work on, but I just couldn't muster up the mental coherency. I spent the day in my pajamas doing light reading. When it was time to go to bed, I was happy that I didn't have to do the hard work of putting on pajamas or taking out my contact lenses, because that day I had not gotten out of my pajamas or put in my contact lenses.
Monday I went to work and left around 3 for a doctor's appointment. I got home around 5:30 and did a bit of work on my homework. However, I found myself overwhelmingly sleepy, and had trouble concentrating on my homework. Around 7:00 I quit doing my homework, had some dinner, and then just waited around until it was late enough to go to bed. I went to bed at 8:35. I slept through the night.
Tuesday morning I got up around 7:00. I sent an e-mail to the people at work saying I'd be out sick, and went back to bed until 10:00. I watched TV about 10-3, then tried to do my homework. It was hard. Trying to think was like walking through two feet of mud. But I forced myself to do it because the homework was due that day.
Wednesday and Thursday were normal days. I worked through the whole day. After work, I was tired, but did a few t hings, including laundry and light reading.
Friday I had stuff going on at work. I was happy, because I like doing interesting stuff. I was busy at work all morning, with more walking around and talking to people than I usually do. When it was over around 1:30, I was past exhausted. I felt like curling up in a ball and whimpering. But I couldn't do that because I was still supposed to be at work. I did some work in the afternoon, but I certainly wasn't at my peak productivity. Then I went to a dinner that was related to the morning's events. When I got out at 7, I went to the radio station and listened to CD's. I had planned to spend the evening that way because I knew I'd be so tired that if I was home, I'd have a hard time knowing what to do with myself. I got home and went to bed around my usual time. It was hard to fall asleep, because I was so tired. It's like there comes a time when you are tired and you are ready to lie down, but then if you keep going for hours after that, you become beyond tired, and your molecules hurt, and you can't even rest. But I did manage to fall asleep.
Saturday I got up. I got dressed and had breakfast. As soon as I did those things, I went grocery shopping. I went to get it out of the way so I could spend the rest of the day resting. I spent the day doing light reading, napping, and playing a computer game. I knew that I have homework to do, and bills to pay, and tax forms to fill out, but I also knew that I needed to recover from my big day the previous day before I could embark on such things. It really wasn't such a big day yesterday, just a few hours of walking around and talking to people, but that's more than I really can handle.
My goal for each week is to work full-time, do laundry, get groceries, and do homework. That is really a bit much for me, but I usually pull it off more or less. I don't cook and clean much. Those things require standing up. I don't go out at night. Well, once in a while I go to a concert, but I pay the price later and it's not something I would do on a regular basis. I don't engage in physically strenuous activities such as hiking or skiing. I am able to do light exercises such as short walks, yoga, Nia, a little gardening, and some short, slow rollerblading. I can't spend more than an hour a day in the aforementioned light exercises, and that's only on a good day. On a bad day, standing up long enough to take a shower is too much work.
So that is my life, and everyone tells me that I'm not really sick.
I was better for a while. Last summer and fall, I thought I was cured. But the books say that that's what it's like. Sometimes you're better and sometimes you're worse. Even when you're better, you not as good as you were before. When I thought I was cured, I was ignoring the fact that I still had to avoid strenuous activity.
The books chronicle the struggle of going to doctor after doctor and being told alternatively that it is just a cold and will be better soon, that it might be something dreadful, that it's depression, and that there's nothing wrong with you. The books talk about how people with CFS are perceived as not looking sick. They describe how many individuals just give up on talking to anyone about being sick, because the responses people give just make it worse. Instead, patients just try to pass for normal. As the web site of the CFIDS Association of America says, "Recognize that although the person may seem 'normal' when you're together, you may not see the relapse which follows activity. Many people with CFIDS want to function at their best when with their friends, but privately pay a price later."
The trouble with healthy people is that they can't comprehend that not all bodies work the same way theirs do. They think you just need to exercise more, socialize more, improve your attitude, or whatever, and then you will be fine. Sometimes I used to try to explain to people who said things like that that it doesn't work that way. But they would never believe me, so I don't even bother. I tell them once what things are like for me, and after that, I figure, if they don't believe me, that's their problem. I'm not going to bother to talk to people if they're not going to bother to listen.
The Doctor's Guide to Chronic Fatigue Syndrome says, "the single greatest treatment offered by the physician is an accurate diagnosis." I am so tired of everyone telling me, "You don't look sick," and, as a result of no one believing me, being expected to function as a normal person. I have started trying to find a doctor who can actually diagnose me. I don't know if I will succeed. So far I have just found dead ends.
Sunday, March 23, 2008
|Your Scholastic Strength Is Deep Thinking|
You are talented at adapting, motivating others, managing resources, and analyzing risk.
You should major in:
|You Are a Red Crayon|
You have a deep, complex personality - and you are always expressing something about yourself.
Bold and dominant, you are a natural leader. You have an energy that is intense... and sometimes overwhelming.
Your reaction to everything tends to be strong. You are the master of love-hate relationships.
Your color wheel opposite is green. Green people are way too mellow to understand what drives your energy.
|You Are Midnight|
Whether you're a nightowl, living in a commune, or taking a vow of silence - you like to experiment with your lifestyle.
Expressing your individuality is important to you, and you often lie awake in bed thinking about the world and your place in it.
You enjoy staying home, but that doesn't mean you're a hermit. You also appreciate quality time with family and close friends.
|You Are Picky When it Counts|
But you're also willing to put up with a few flaws in your Mr. Right
You should congratulate yourself on having a realistic approach to dating.
You probably have quite a few great guys you can date!
|You Are 33% Scary|
You're a normal woman. You're not perfect, but you're pretty darn close.
|You are a Hippie|
You don't trust authority, and you do as you please. You're willing to take a stand, even when what you believe isn't popular.
You like to experiment with ideas, lifestyles, and different subcultures.
You always gravitate toward what's radical and subversive. Normal, mainstream culture doesn't really resonate with you.
|Men See You As Choosy|
You take a selective approach to dating, and you can afford to be picky
You aren't looking for a quick flirt - but a memorable encounter
It may take men a while to ask you out, but it's worth the wait
|Your Ideal Relationship is Marriage|
And that's marriage - with the right person.
You're serious about settling down some time soon.
Even if you haven't met the person you want to get hitched to!
|Your Inner Muse is Euterpe|
While you may or may not be musical...
You love music and set life to your own personal soundtrack.
And you are good at making anyone's heart sing!
Your Dominant Intelligence is Intrapersonal Intelligence
Reflective and thoughtful, you enjoy spending time alone.
You are good at analyzing yourself - and knowing your true feelings.
Totally self aware, you are in tune with your dreams and desires.
A spiritual and philosophical person, your inner calmness inspires and helps others.
You would make a great philosopher, researcher, or theorist.
|You Are Psyche!|
You're curious and creative with a total sense of wonder.
Totally empathetic, you pick up on other's moods easily.
Just be sure to pamper yourself as well!