Rom 8:18 For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us. 19 For the creation waits with eager longing for the revealing of the sons of God. 20 For the creation was subjected to futility, not willingly, but because of him who subjected it, in hope 21 that the creation itself will be set free from its bondage to corruption and obtain the freedom of the glory of the children of God. 22 For we know that the whole creation has been groaning together in the pains of childbirth until now. 23 And not only the creation, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for adoption as sons, the redemption of our bodies. 24 For in this hope we were saved. Now hope that is seen is not hope. For who hopes for what he sees? 25 But if we hope for what we do not see, we wait for it with patience.
1Cor 15:36 What you sow does not come to life unless it dies. 37 And what you sow is not the body that is to be, but a bare kernel, perhaps of wheat or of some other grain. 38 But God gives it a body as he has chosen, and to each kind of seed its own body. 39 For not all flesh is the same, but there is one kind for humans, another for animals, another for birds, and another for fish. 40 There are heavenly bodies and earthly bodies, but the glory of the heavenly is of one kind, and the glory of the earthly is of another. 41 There is one glory of the sun, and another glory of the moon, and another glory of the stars; for star differs from star in glory. 42 So is it with the resurrection of the dead. What is sown is perishable; what is raised is imperishable. 43 It is sown in dishonor; it is raised in glory. It is sown in weakness; it is raised in power. 44 It is sown a natural body; it is raised a spiritual body.
2 Cor 4:16 So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. 17 For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, 18 as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. 5:1 For we know that if the tent that is our earthly home is destroyed, we have a building from God, a house not made with hands, eternal in the heavens. 2 For in this tent we groan, longing to put on our heavenly dwelling, 3 if indeed by putting it on we may not be found naked. 4 For while we are still in this tent, we groan, being burdened—not that we would be unclothed, but that we would be further clothed, so that what is mortal may be swallowed up by life. 5 He who has prepared us for this very thing is God, who has given us the Spirit as a guarantee. 6 So we are always of good courage. We know that while we are at home in the body we are away from the Lord, 7 for we walk by faith, not by sight. 8 Yes, we are of good courage, and we would rather be away from the body and at home with the Lord. 9 So whether we are at home or away, we make it our aim to please him.
Inspired by God, these words were all penned by Paul, a man who's physical suffering was almost supernatural, he was thought dead and thrown in the morgue a few times. So both you and I can take him seriously when he talks. He was a varsity sufferer, I am merely JV.
These bodies we are in, they aren't the final product. They are just acorns. Acorns are small, plentiful, and worthless to everyone but the squirrels. In the right season, we walk over hundreds of them a week, crushing them beneath our feet. But a few acorns grow into the final product, the tree. And some of those trees grow to be hundreds of feet tall. And those trees are large, prominent, and of great value. No mere human could squash them, they are majestic and towering. But an acorn doesn't just become a tree by magic. It gets cracked, starts to break, sinks into the ground, and the outer shell rots and is torn apart by the life growing inside it. By the time the first shoots of leaves are growing, the acorn is gone, used up, destroyed. But the life that was hidden inside of it is growing exponentially, processing light and CO2 into oxygen, and making the planet a place where humans can breathe.
Our bodies are like that, just acorns. We too have the capacity to grow into something so much larger, but the acorn has to be broken, rot, and ultimately be destroyed. It is no more unnatural than a mother screaming during childbirth. That knowledge doesn't make the pain less, but it gives us hope. If we love and trust in Jesus, the image of the invisible God, then our sin is being killed and our spirits given new life. That new life will quickly expand past the walls of our acorn, and that hurts, but it isn't the end. It is only the beginning.
So be a good steward of your health, surely, but remember that it is temporary. Losing it isn't the end of the world, it is just a part of the process. After you have satisfied the bounds of being responsible, if you aren't healthy, it is time to learn to follow Jesus in this new stage of the process. And oh, how good the end of that process is!
Micah 4:6 In that day, declares the Lord,
I will assemble the lame
and gather those who have been driven away
and those whom I have afflicted;
7 and the lame I will make the remnant,
and those who were cast off, a strong nation;
and the Lord will reign over them in Mount Zion
from this time forth and forevermore.
Zeph 3:17 The Lord your God is in your midst,
a mighty one who will save;
he will rejoice over you with gladness;
he will quiet you by his love;
he will exult over you with loud singing.
18 I will gather those of you who mourn for the festival,
so that you will no longer suffer reproach.
19 Behold, at that time I will deal
with all your oppressors.
And I will save the lame
and gather the outcast,
and I will change their shame into praise
and renown in all the earth.
Aug 6, 2010
Jul 19, 2010
What is your cage doing to you?
http://www.eurekalert.org/pub_releases/2010-07/uocd-rfm071610.php
The person who posted this to the Motor Neuron Disease boards followed the link with this quote:
"It doesn't only affect us."
I am generally a very "social model" of disability kind of person, but sometimes it fails us. It fails us when we can't do things a different way anymore, when we simply can't do them at all. What the poster was referring to ultimately is being "locked in”, the point that all connection to the outside world ends.
90% of locked in people experience brain death in short order. I am working with a man a little older than me at a local nursing home, and he has been in that state for 4 years. He isn't quite locked in by medical standards, but lack of any kind of occupational therapy has denied him the use of his remaining movement - some level of blinking and a right finger twitch, a small ability to move his head to the right. He is still in there, and I am in awe of his mental stamina. He makes his high effort, small head movement when a pretty lady walks by or one teases him that she has lost weight. He opens his eye widely when dad asks him if he wants to try our newest contraption. We are making progress, and we may have real yes\no\maybe communication this very week! It is a great mystery, what he wants, what he likes, what kind of person he has become. I look forward to really meeting him.
I know that having my communication limited has changed how I think, not just how I express my thought. I think of things to say that didn't come to mind before, things pre-structured to get a positive response with few words. Conversely, I have inner monologues that are new to my thought life, unfiltered for sharing with others. They are the thoughts of a solitary person, even though I live in a bustling house. That is what my cage is doing to me.
The person who posted this to the Motor Neuron Disease boards followed the link with this quote:
"It doesn't only affect us."
I am generally a very "social model" of disability kind of person, but sometimes it fails us. It fails us when we can't do things a different way anymore, when we simply can't do them at all. What the poster was referring to ultimately is being "locked in”, the point that all connection to the outside world ends.
90% of locked in people experience brain death in short order. I am working with a man a little older than me at a local nursing home, and he has been in that state for 4 years. He isn't quite locked in by medical standards, but lack of any kind of occupational therapy has denied him the use of his remaining movement - some level of blinking and a right finger twitch, a small ability to move his head to the right. He is still in there, and I am in awe of his mental stamina. He makes his high effort, small head movement when a pretty lady walks by or one teases him that she has lost weight. He opens his eye widely when dad asks him if he wants to try our newest contraption. We are making progress, and we may have real yes\no\maybe communication this very week! It is a great mystery, what he wants, what he likes, what kind of person he has become. I look forward to really meeting him.
I know that having my communication limited has changed how I think, not just how I express my thought. I think of things to say that didn't come to mind before, things pre-structured to get a positive response with few words. Conversely, I have inner monologues that are new to my thought life, unfiltered for sharing with others. They are the thoughts of a solitary person, even though I live in a bustling house. That is what my cage is doing to me.
Jun 19, 2010
10 years
Ten years ago, I recovered from a dissociative fugue. It was not a perfectly classical one, but an MD felt that was the best label so I'll stick with that. Having read about them, it seems mine was less acute but more drawn out than usual, and I wonder if I would have stayed where I was if I hadn't been having an exascerbation that paralyzed me at the same time. To this day I don't really understand it all very well, but what I do know is that it was my ticket to a second shot at life. I don't remember what happened before it well, nor do I have a great handle on what happened during it. In a very serious way, I started this life just ten years ago on a foundation built with scraps of a former life, the personality of the life before the fugue, a relationship with God that existed in all three states of being, and the social life I woke up in. I am now ten years old, and what a decade it has been!
There were first a lot of complications to handle. I woke up 9 months after I "left". Those first days are a haze of trying to integrate old memories and personality with current reality. I can't say that it went perfectly smoothly. From what everyone said at the time I was shy, pliable, and reticent during the fugue, and my natural personality is quite the opposite. Some of the friends I woke up to having took that very well, but for some it was hard to take. I had begun dating during the fugue, my first boyfriend, and the relationship didn't survive my recovery. I certainly don't blame him, and I can happily report that after getting to know me for real we got back together and after years of on and off dating we married in 2007. My gaming group was my main social outlet, and they were a tremendous help. They gave me a new nickname to go by and straightened out a lot of my confusion. I adopted many of their mannerisms and was strongly influenced by their attitudes. They were like elder siblings to me in a time of great need. Our D&D game was the most stable thing in my life at the time, and it gave me a life long love of the tabletop RPG. To this day we game a day or two a week.
During my downtime I had flunked a semester of college, pure 0.0 gpa. School was something I was very good at in the old days, but it never figured prominently in my new life. I had also taken and done well on a civil service test, and a few weeks after my recovery started I began a job at the IRS. I tried one more semester the next year, but it didn't go well for a number of reasons. These days I am highly self-educated and world events aware, and I am happier I spent those years working instead of at college. I got a lot out of those life experiences, and progressive disability was quickly destroying those opportunities for me.
I worked until I couldn't, then did it some more and caused permanent damage. I did the same thing with walking. After a long, dark summer I got smart about living with disability. I became a wheelchair user, got good at it, and had a great time while the physical ability to do so lasted. I also dug deep into the art of cooking, got married, good times.
Now I am still making the most of every day, but I am doing it from a powerchair and often with a speech device. It is still a good life and I am enjoying it. It is hard to describe what all I do with my days, but they are pretty full and very unusual. Banal days are rare, I find myself talking to or helping the oddest of folk. There is a lot of adventure to my life. God has been very good to me, and I know him better and deeper than I ever have. I know I was a christian before the fugue, but just barely, and a true understanding of the gospel I seriously lacked. That has been filled in now, and it colors every aspect of my life.
Most people don't get the kind of second chance I did. I deeply appreciate it, and take it as a gift from heaven. I was hopeless and empty beforehand, and my current life is abundant indeed.
There were first a lot of complications to handle. I woke up 9 months after I "left". Those first days are a haze of trying to integrate old memories and personality with current reality. I can't say that it went perfectly smoothly. From what everyone said at the time I was shy, pliable, and reticent during the fugue, and my natural personality is quite the opposite. Some of the friends I woke up to having took that very well, but for some it was hard to take. I had begun dating during the fugue, my first boyfriend, and the relationship didn't survive my recovery. I certainly don't blame him, and I can happily report that after getting to know me for real we got back together and after years of on and off dating we married in 2007. My gaming group was my main social outlet, and they were a tremendous help. They gave me a new nickname to go by and straightened out a lot of my confusion. I adopted many of their mannerisms and was strongly influenced by their attitudes. They were like elder siblings to me in a time of great need. Our D&D game was the most stable thing in my life at the time, and it gave me a life long love of the tabletop RPG. To this day we game a day or two a week.
During my downtime I had flunked a semester of college, pure 0.0 gpa. School was something I was very good at in the old days, but it never figured prominently in my new life. I had also taken and done well on a civil service test, and a few weeks after my recovery started I began a job at the IRS. I tried one more semester the next year, but it didn't go well for a number of reasons. These days I am highly self-educated and world events aware, and I am happier I spent those years working instead of at college. I got a lot out of those life experiences, and progressive disability was quickly destroying those opportunities for me.
I worked until I couldn't, then did it some more and caused permanent damage. I did the same thing with walking. After a long, dark summer I got smart about living with disability. I became a wheelchair user, got good at it, and had a great time while the physical ability to do so lasted. I also dug deep into the art of cooking, got married, good times.
Now I am still making the most of every day, but I am doing it from a powerchair and often with a speech device. It is still a good life and I am enjoying it. It is hard to describe what all I do with my days, but they are pretty full and very unusual. Banal days are rare, I find myself talking to or helping the oddest of folk. There is a lot of adventure to my life. God has been very good to me, and I know him better and deeper than I ever have. I know I was a christian before the fugue, but just barely, and a true understanding of the gospel I seriously lacked. That has been filled in now, and it colors every aspect of my life.
Most people don't get the kind of second chance I did. I deeply appreciate it, and take it as a gift from heaven. I was hopeless and empty beforehand, and my current life is abundant indeed.
Jun 5, 2010
Distilling the Cry of my Heart
As my disease progression has gone bulbar, I am losing my ability to speak. It started with my ability to sing, and now if I talk too much or too loudly I wear out my voice very quickly. It is a philosophically interesting journey. The cliche is "talk is cheap“, and it certainly used to be. I am downright garrulous, and I have yakked late into the night about the most trivial of topics. I shudder to think how many hours I have spent comparing Star Trek series, D&D classes, or debating the best theoretical voting system.
Talk is no longer cheap, but instead priced fairly high. I have to think about how worthwhile a comment is, and like internet posting, it results in a lot of self-censorship. In the meantime, I am setting up a speech device and working on voice banking. Voice banking is the process of recording yourself saying things so that you can incorporate it into electronic speech. It seems simple enough at first glance, but then you realize you are going to be stuck with this collection for the rest of your life! What will you desperately want to say in your own voice in 5 years? 10 years? Does a recorded "I love you" convey more genuine emotion than spontaneously synthesized speech or will it just be repetitious?
Setting up a speech device also makes you divide your life into categories of prewritten phrases. Some serve two functions: "Faith!" could be exclaimed as an answer to a sunday school question or to alert my sister of something. Most things, however, are situation specific. How much work you put in ahead of time to each one is a very serious priority decision. Talkers are impatient and will often change the topic before you are able to type an in depth response. What should you be prepared to say well?
Talk is no longer cheap, but instead priced fairly high. I have to think about how worthwhile a comment is, and like internet posting, it results in a lot of self-censorship. In the meantime, I am setting up a speech device and working on voice banking. Voice banking is the process of recording yourself saying things so that you can incorporate it into electronic speech. It seems simple enough at first glance, but then you realize you are going to be stuck with this collection for the rest of your life! What will you desperately want to say in your own voice in 5 years? 10 years? Does a recorded "I love you" convey more genuine emotion than spontaneously synthesized speech or will it just be repetitious?
Setting up a speech device also makes you divide your life into categories of prewritten phrases. Some serve two functions: "Faith!" could be exclaimed as an answer to a sunday school question or to alert my sister of something. Most things, however, are situation specific. How much work you put in ahead of time to each one is a very serious priority decision. Talkers are impatient and will often change the topic before you are able to type an in depth response. What should you be prepared to say well?
May 10, 2010
What I once took for granted...
It feels like a dream now, but there was once a time when I was able to eat a wide range of foods. Eating was pleasurable, and I felt better at the completion than I did at the start. Never did I imagine the day when eating would become an uncomfortable, dispiriting chore. I wish now that I had taken the time to appreciate it then.
Mar 9, 2010
Xena, Warrior Princess
I just finished watching the full show in order, thanks to Netflix and still being stuck in bed until I get a powerchair. It was surprisingly gratifying on a number of levels. There is an underlying consistency to its alternative myths, though its cosmology is full of holes. There was even a consistent, tragic, ultimately hopeless theology if you ignore the scattered eschatology. It confronted real questions of absolute morality, even when its world had no answers. Silly episodes aside, there was character growth that included greater humility. Humiliity having been kicked out of the virtue list in favor of self-esteem, that is cheeringly old fashioned! Many geek favorites have a tendency to forget previous solutions to problems, ala Star Trek's hastily abandoned transporter ressurection technique, but the Xena team either kept using them where appropriate or explaining why they wouldn't work. I think especially of the "Pinch". It shows up in many other instances, too. They took care to bring a cleanly defined ending for the many repeat side characters, even addressing the fate of future reincarnations.
What most amazed me, given the campy nature of the show, was the ability of the character's struggles to reach my heart strings. The circumstances surrounding their internal morality conflicts were often arbitrary, but explained well enough to put you in the character's shoes to confront their choices. Those choices, whatever the enforcing macguffin, were generally timeless. Where do your rights end and another's begin? How do you confront someone who you have wronged unhypocritically if they need to be confronted for the sake of others? If you don't believe in a mediator, how do you adress a crushing load of sin? If you recognize nothing greater than yourself, how can you be transformed? What weight does the law carry when it fails to bring justice? When is meekness more effective than brute strength? How can you decide which group or individual's needs outweigh the other's?
I really appreciated the chance to watch it all. Watching in order took my enjoyment and respect for the show to a completely different level. I would love to see more long running shows that tackle a good and evil deeper than environmentalism and cultural relativism. I don't have to agree with the answer, but I am grateful when they pose the question.
What most amazed me, given the campy nature of the show, was the ability of the character's struggles to reach my heart strings. The circumstances surrounding their internal morality conflicts were often arbitrary, but explained well enough to put you in the character's shoes to confront their choices. Those choices, whatever the enforcing macguffin, were generally timeless. Where do your rights end and another's begin? How do you confront someone who you have wronged unhypocritically if they need to be confronted for the sake of others? If you don't believe in a mediator, how do you adress a crushing load of sin? If you recognize nothing greater than yourself, how can you be transformed? What weight does the law carry when it fails to bring justice? When is meekness more effective than brute strength? How can you decide which group or individual's needs outweigh the other's?
I really appreciated the chance to watch it all. Watching in order took my enjoyment and respect for the show to a completely different level. I would love to see more long running shows that tackle a good and evil deeper than environmentalism and cultural relativism. I don't have to agree with the answer, but I am grateful when they pose the question.
Feb 11, 2010
Lawlessness
"Come see: this is what happens when money and market, alone, guide the way we live." Timothy Egan on forclosure ridden slum suburbs (http://opinionator.blogs.nytimes.com/2010/02/10/slumburbia/)
Also in today's news: why more people die of neglect in long term care hospitals, and the perverse financial incentives that created them. (http://www.nytimes.com/2010/02/10/health/policy/10care.html?ref=health)
We can't forget the coverage of Wall Street bonuses based on the most short term of profit margins.
On a more personal note, I am reminded of a married friend that was shaken to discover he had thoughtlessly started dancing in a sexually charged manner with a lady friend, but could not see all of the quiet lines of propriety he had crossed to come to that place of trouble.
Why do I bring all this together? All of these stories are the result of letting wealth or pleasure be our barometer of progress. When all law is external to us, when our inward code is morally bankrupt or utilitarian we push through loopholes and test the borders of whatever external law to the harm of ourselves and others. This is classical Biblical lawlessness.
"For just as you once presented your members as slaves to impurity and to lawlessness leading to more lawlessness, so now present your members as slaves to righteousness leading to sanctification." Rom 6:19
Titus 2:11 For the grace of God has appeared, bringing salvation for all people, 12 training us to renounce ungodliness and worldly passions, and to live self-controlled, upright, and godly lives in the present age, 13 waiting for our blessed hope, the appearing of the glory of our great God and Savior Jesus Christ, 14 who gave himself for us to redeem us from all lawlessness and to purify for himself a people for his own possession who are zealous for good works.
"Everyone who makes a practice of sinning also practices lawlessness; sin is lawlessness." 1 John 3:4
The more I learn about the world the more wise I realize God is! When we blindly follow base desires, our iniquity (moral twistedness) destroys our perceptions of our actions so we can't even perceive the damage we do. David understood this and it inspired him to write love songs to the Law. In a society that is increasingly individualistic it is becoming clear to me that humans desperately need an outside yardstick to measure our choices by, even if it is a flawed one. (Jesus's explanation of the Torah's divorce law illustrates this well). Moral relativism crashes and breaks on the rocks of action's consequence. Civil law is external, at it's best written and administered it can only build a wall between the citizen and lawlessness. Citizens ultimately follow their personal code, whether that takes them over, under, or through that wall and the wall only can impede so well.
So where does that lead us? To me it means we must be alert to what our motivations are, what the long term effects of our choices are, and the differences between our claimed and realistic internal code.
Also in today's news: why more people die of neglect in long term care hospitals, and the perverse financial incentives that created them. (http://www.nytimes.com/2010/02/10/health/policy/10care.html?ref=health)
We can't forget the coverage of Wall Street bonuses based on the most short term of profit margins.
On a more personal note, I am reminded of a married friend that was shaken to discover he had thoughtlessly started dancing in a sexually charged manner with a lady friend, but could not see all of the quiet lines of propriety he had crossed to come to that place of trouble.
Why do I bring all this together? All of these stories are the result of letting wealth or pleasure be our barometer of progress. When all law is external to us, when our inward code is morally bankrupt or utilitarian we push through loopholes and test the borders of whatever external law to the harm of ourselves and others. This is classical Biblical lawlessness.
"For just as you once presented your members as slaves to impurity and to lawlessness leading to more lawlessness, so now present your members as slaves to righteousness leading to sanctification." Rom 6:19
Titus 2:11 For the grace of God has appeared, bringing salvation for all people, 12 training us to renounce ungodliness and worldly passions, and to live self-controlled, upright, and godly lives in the present age, 13 waiting for our blessed hope, the appearing of the glory of our great God and Savior Jesus Christ, 14 who gave himself for us to redeem us from all lawlessness and to purify for himself a people for his own possession who are zealous for good works.
"Everyone who makes a practice of sinning also practices lawlessness; sin is lawlessness." 1 John 3:4
The more I learn about the world the more wise I realize God is! When we blindly follow base desires, our iniquity (moral twistedness) destroys our perceptions of our actions so we can't even perceive the damage we do. David understood this and it inspired him to write love songs to the Law. In a society that is increasingly individualistic it is becoming clear to me that humans desperately need an outside yardstick to measure our choices by, even if it is a flawed one. (Jesus's explanation of the Torah's divorce law illustrates this well). Moral relativism crashes and breaks on the rocks of action's consequence. Civil law is external, at it's best written and administered it can only build a wall between the citizen and lawlessness. Citizens ultimately follow their personal code, whether that takes them over, under, or through that wall and the wall only can impede so well.
So where does that lead us? To me it means we must be alert to what our motivations are, what the long term effects of our choices are, and the differences between our claimed and realistic internal code.
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