The other week I had a vivid dream that showed me my death in the future. The landscape was solid white and disappeared over the horizon. There was a tiny black figure near the horizon and I wondered what it was. An unknown narrator answered that the distance away from me was the future and the figure was placed at the exact time of my death. I wondered if that time was fixed or could be moved, and the narrator said it could be moved up or back by all sorts of things, but it never went away. In other words, my simulacrum would always be there ahead of me, waiting for me to catch up with it. As we get closer it gets larger until finally it is the same size as we are and when we meet it, we die. There the dream ended.
The other afternoon I was laying down for a nap or rest when suddenly I heard a snapping sound like an electric spark. I looked around and found myself in a totally black space with an ordinary looking man standing in from of me. I said "What the f*** was that?", and he said "a heart attack". "A heart attack?" "Yes, you just died of a heart attack.". Calmly I said "and who would you be?"
"God." I asked him why he looked like an ordinary man dressed in casual clothes and he explained that he varied his look to make the person he was talking to more comfortable. He asked me to watch carefully, and then he changed into Shiva, Ganesh, Mithra, Thor, Zeus, an unrecognizable but very large and scary dragon of some kind, and then back to the man. Impressive. I told him that dying was ok, but the timing was not good. I told him that I knew that he knew Sally, and that she would not be able to cope with this sudden loss, that it would be cruel beyond feeling and that he should reconsider taking me. We talked for a bit and he said that we had better come to closure because my body was nearly at the point of physical death. Finally he said "OK, go back. I'll take care of the damage, but remember, you owe me. And I won't do this again." I thanked him and the next thing I knew - back on the bed.
So what exactly was that? Stuffed if I know. But I'll tell you this. If that really was god, and I really did talk to him, he is an OK guy. And I hope that my simulacrum has moved way off on the horizon.
I looked, but couldn't find the white landscape. Maybe tonight.
Thursday, August 13, 2009
Lies and damn lies
"Lie" : An act or instance of lying; a false statement made with intent to deceive (OED). "Damn lie": An act of repeating over and over a false statement that you know is false. (Woody).
Now nobody out there should doubt that I am at times a liberal, but I have some conservative notes in my song. But I like to think of myself as a thinking person.
That said, I am sick to death of the damn lies being repeated by Sarah Palin *and other conservatives about the health plan and euthanasia. Read the plan Sarah. It isn't in there. It just allows payment for end of life counseling if the person wants it. Does that sound like some kind of Nazi death provision?
I don't know all of what's in the plans that are floating around, but I know there is NO EUTHANASIA PROVISION. What the hell is wrong with people? Ahhhhhh. Right. Easily lead and easily fooled. Hale-boppers (Heavens Gate)and Jonestowners and Wacoers. And millions of others in the world that don't bother to think.
So the health plan may suck. It may not work. It may need work. Something certainly needs to be done. What? Stuffed if I know.
*http://news.yahoo.com/s/ap/20090813/ap_on_go_co/us_health_care_end_of_life
Now nobody out there should doubt that I am at times a liberal, but I have some conservative notes in my song. But I like to think of myself as a thinking person.
That said, I am sick to death of the damn lies being repeated by Sarah Palin *and other conservatives about the health plan and euthanasia. Read the plan Sarah. It isn't in there. It just allows payment for end of life counseling if the person wants it. Does that sound like some kind of Nazi death provision?
I don't know all of what's in the plans that are floating around, but I know there is NO EUTHANASIA PROVISION. What the hell is wrong with people? Ahhhhhh. Right. Easily lead and easily fooled. Hale-boppers (Heavens Gate)and Jonestowners and Wacoers. And millions of others in the world that don't bother to think.
So the health plan may suck. It may not work. It may need work. Something certainly needs to be done. What? Stuffed if I know.
*http://news.yahoo.com/s/ap/20090813/ap_on_go_co/us_health_care_end_of_life
Sunday, August 9, 2009
"A mind is a terrible thing to waste" *
She was a pretty girl with a great personality and bright future. But she had been kept in a cruel prison for most of her life. She didn't understand why she was imprisoned only that the torture of seeing herself trapped forever by circumstance was nearly more than she could bear. All she ever wanted was a normal life. This was denied to her by her prison. When she looked in a mirror she saw not the pretty girl with the great personality and bright future, but a beautiful pair of eyes looking out of a mountain of fat. She was in there somewhere, imprisoned by her own body.
I read this short story (alas the citation fails me) many years ago. It left me feeling sad for the girl within and angry at the girl without. Those emotions are probably best left for another day. This story came to mind when I thought the other day about the terrible and very real possibility of a stroke victim being a prisoner in a body that no longer responded to commands. A cruel trap for the mind. How, I asked, could someone endure the isolation of one-way communication? The humiliation of daily care? The being overlooked by others as they talked about you as if you were not a presence in the room? I am talking here about those massive strokes that don't kill but leave a person in a prison of flesh with an intact mind. Not the kind where recovery is likely, but those that have little hope of normalcy. No walking. No talking. No independent activity what-so-ever.
This brought to mind another kind of prisoner. The cerebral palsy sufferer. (CP). I have been with many CP people over the years and have found most with beautiful minds and good intellects. Why not all you ask? Doesn't CP usually leave the mind intact while the body fails? The answer is yes, the mind is almost never functionally damaged by CP. But the ravages of the body can lead to the stroke-like situation of one-way communication.
Imagine a baby born with a very sever level of CP. Potentially normal mind that cannot reach out. Babies and the children they become have in the past often been considered mentally retarded because they couldn't respond. Well guess what? If a person with normal thinking potential is treated as if they are mentally retarded they can become functionally that way. Not because the latent ability was absent, but because the latency was never developed. Every day thousands of human being's minds are wasted because they are cut off from the world.
The point, you ask? Well, for one thing each of us can hope we don't have the massive stroke that takes away the body but leaves the mind. Better for the more massive one that just drops you like a sack of sand. And as far as CP is concerned, the next time you get a chance to talk to someone that has it, let them talk, and listen carefully to what they say. It's hard sometimes, but if you just smile and nod and say not much at all, then you are just patronizing them, not talking to/with them. If you don't understand what they say, be persistent. They know it's hard for you to understand them. They want you to. They will work hard to help you. Just let them.
Now for the future. What we need is a brain-computer interface that allows a brain to speak directly through a processor without the need to physically talk. You can think talking in your head, so the formation of all the speech is there. We need a device that will read those outputs and convert them into algorithms that can be formulated into speech by a computer of some kind. I think research into this is already underway and I hope it gets ready by the time you or I need it. Think of the minds that could be unlocked from prison.
And for the girl there is hope too: research has uncovered many genetic connections that make body proportions difficult to manage. Genes for extremely efficient use of food, and genes for resistance of the use of stored fat in metabolism have been identified. So with some counseling, maybe some surgery and some genetic manipulation genetically obese people may walk away from the prison they live in. Don't tell me all they need to do is quit eating. Ever try it?
*http://www.uncf.org/?gclid=CNW5zqCevZYCFQpOMAodsnxMzA
I read this short story (alas the citation fails me) many years ago. It left me feeling sad for the girl within and angry at the girl without. Those emotions are probably best left for another day. This story came to mind when I thought the other day about the terrible and very real possibility of a stroke victim being a prisoner in a body that no longer responded to commands. A cruel trap for the mind. How, I asked, could someone endure the isolation of one-way communication? The humiliation of daily care? The being overlooked by others as they talked about you as if you were not a presence in the room? I am talking here about those massive strokes that don't kill but leave a person in a prison of flesh with an intact mind. Not the kind where recovery is likely, but those that have little hope of normalcy. No walking. No talking. No independent activity what-so-ever.
This brought to mind another kind of prisoner. The cerebral palsy sufferer. (CP). I have been with many CP people over the years and have found most with beautiful minds and good intellects. Why not all you ask? Doesn't CP usually leave the mind intact while the body fails? The answer is yes, the mind is almost never functionally damaged by CP. But the ravages of the body can lead to the stroke-like situation of one-way communication.
Imagine a baby born with a very sever level of CP. Potentially normal mind that cannot reach out. Babies and the children they become have in the past often been considered mentally retarded because they couldn't respond. Well guess what? If a person with normal thinking potential is treated as if they are mentally retarded they can become functionally that way. Not because the latent ability was absent, but because the latency was never developed. Every day thousands of human being's minds are wasted because they are cut off from the world.
The point, you ask? Well, for one thing each of us can hope we don't have the massive stroke that takes away the body but leaves the mind. Better for the more massive one that just drops you like a sack of sand. And as far as CP is concerned, the next time you get a chance to talk to someone that has it, let them talk, and listen carefully to what they say. It's hard sometimes, but if you just smile and nod and say not much at all, then you are just patronizing them, not talking to/with them. If you don't understand what they say, be persistent. They know it's hard for you to understand them. They want you to. They will work hard to help you. Just let them.
Now for the future. What we need is a brain-computer interface that allows a brain to speak directly through a processor without the need to physically talk. You can think talking in your head, so the formation of all the speech is there. We need a device that will read those outputs and convert them into algorithms that can be formulated into speech by a computer of some kind. I think research into this is already underway and I hope it gets ready by the time you or I need it. Think of the minds that could be unlocked from prison.
And for the girl there is hope too: research has uncovered many genetic connections that make body proportions difficult to manage. Genes for extremely efficient use of food, and genes for resistance of the use of stored fat in metabolism have been identified. So with some counseling, maybe some surgery and some genetic manipulation genetically obese people may walk away from the prison they live in. Don't tell me all they need to do is quit eating. Ever try it?
*http://www.uncf.org/?gclid=CNW5zqCevZYCFQpOMAodsnxMzA
Thursday, August 6, 2009
A tale of the "Hose Nose"
Ever notice how among friends insults become indicators of affection or respect? Like black people calling each other the "N" word? (See, I can be sensitive even though I don't necessarily agree that it is necessary). I was thinking of a friend of mine, long lost to time, named Bob Pell. He was from Scranton, Pa. and brought many tales of that town to Miami. The mix of friends was pretty diverse, and the names we called each other were no doubt insulting sounding to outsiders but were affectionately applied. In the group we had an Italian, a couple of Jews, an Atheist, a Cracker (couldn't tell you what ethnicity he was, only that he was white with lots of freckles). a Polish guy and a German guy (who were also Catholic, thus providing yet another target). The usual epithets flew around the poker table without insult. Bob's nickname was "hose nose" and indeed he did have a prominent protuberance. But the Cracker had a bigger nose and no one even thought to mention it. We called him "Tiger" or "Wino" or just plain "Wine" (Not whine, never). Bob was also called "Nick Pelligrino" , not in an attempt to disguise his Jewish heritage, just to make him more of a gangsta, I suppose. None of us were really gangstas. Another guy was called "Micro" because he told us he had a small dick. We never actually saw it, so maybe it was small. But he was OK with the moniker.
One day somebody asked Hose Nose a deep philosophical question and before he could answer someone said (in a deep prophetic voice) "Who knows what the hose nose knows. (here there was a pause then said slowly) Speak- - - beak." We laughed to tears and from then on "Speak - - - Beak" became a regular part of the patter.
Bob could also spell sounds very convincingly. Make a sound, like a burp for instance, and he would spell it so you could actually reproduce the sound from the word. A genius.
I have often been reminded of these friends and our teasing and often wondered if in later life any of them remembered the great line of sagacity. I also wonder if any remember those days as being brimming with insults, or of comradery like I do. And I wonder where Tiger, Nick, Micro and the rest are.
My nickname? Oh no. I'm not that dumb. (OK, Don Juan, OK?)
One day somebody asked Hose Nose a deep philosophical question and before he could answer someone said (in a deep prophetic voice) "Who knows what the hose nose knows. (here there was a pause then said slowly) Speak- - - beak." We laughed to tears and from then on "Speak - - - Beak" became a regular part of the patter.
Bob could also spell sounds very convincingly. Make a sound, like a burp for instance, and he would spell it so you could actually reproduce the sound from the word. A genius.
I have often been reminded of these friends and our teasing and often wondered if in later life any of them remembered the great line of sagacity. I also wonder if any remember those days as being brimming with insults, or of comradery like I do. And I wonder where Tiger, Nick, Micro and the rest are.
My nickname? Oh no. I'm not that dumb. (OK, Don Juan, OK?)
On cooking supper
NPR again. Many American spends 2 hours or more a day watching cooking programs and 30 minutes preparing, cooking,serving and cleaning up for dinner. Now that is pitiful. Cooking "reality" programs have been raised (lowered?) to the level of combat, so I'm told. People say they don't have the time to prepare and enjoy a meal so they default to fast food, pre-prepared dinners or some other shortcut. But they have time to WATCH people cook. Now that makes no sense to me at all. I have enjoyed cooking since I was a sprog. Chef Boyardee got me started at about 11. I enjoy the planning, shopping, cooking, eating and yes even the cleanup. Takes me about 2 hours on average to the dinner on the table. Time well spent. Critical decisions must be made. Timing must be right. Concentration is fairly intense at some stages. The results are usually good. Fresh veggies, fish, meat, sauces, wine. Oh, the wine. Lately I have been using plonk for nearly every meal. Aussie term for cheap but drinkable everyday wine. At 3 bottles for ten bucks we can afford a bottle a day without breaking the budget. Sometimes I raid the wine locker for a nicer vintage label. A chewy Pinotage with prime rib, or a subtle Sauvignon Blanc with a grilled coho fillet. Yummm. At the end of most days my accomplishments can be added up on one hand and sometimes on only a few fingers. One of them will be supper.
Wednesday, August 5, 2009
New technologies and dinosaurs
Many years I wrote this:
Paleolithic (or something like that):
Since the dawn of our existence a long time ago
we've learned the use of many thing of which we ought not know.
We've a weapon that we never had and words we sometimes use
like loyalty and brotherhood. These we most abuse.
But the weapon (oh, the weapon) will be our fate, our doom
That terrible thing, the sling.
See? Crap really. But even then, and it was about 1960, I was thinking of technology and the devastating effect it can have on life as we know it. Look now. Electronics medicine agriculture all advanced in the last 50 or so years. Some things unbelievable if discussed in 1960. But here we are. Nano this and pico that. And chips, my god the chips. Smaller faster better, every 18 months. (The chip: England's contribution to cuisine).
So when a newish on line tool comes around I think "well, more crap to make crappy teaching no better." I think I have a lock on the truth. But now I don't know. I am playing with a newish technology and it is pretty cool. And there are more to come. I still don't think that a computer screen no matter how interactive can ever take the place of a good classroom. But I am beginning to see the point.
Dinosaurs became birds by a long and random process. Maybe this dinosaur will learn to fly with slightly more grace.
Paleolithic (or something like that):
Since the dawn of our existence a long time ago
we've learned the use of many thing of which we ought not know.
We've a weapon that we never had and words we sometimes use
like loyalty and brotherhood. These we most abuse.
But the weapon (oh, the weapon) will be our fate, our doom
That terrible thing, the sling.
See? Crap really. But even then, and it was about 1960, I was thinking of technology and the devastating effect it can have on life as we know it. Look now. Electronics medicine agriculture all advanced in the last 50 or so years. Some things unbelievable if discussed in 1960. But here we are. Nano this and pico that. And chips, my god the chips. Smaller faster better, every 18 months. (The chip: England's contribution to cuisine).
So when a newish on line tool comes around I think "well, more crap to make crappy teaching no better." I think I have a lock on the truth. But now I don't know. I am playing with a newish technology and it is pretty cool. And there are more to come. I still don't think that a computer screen no matter how interactive can ever take the place of a good classroom. But I am beginning to see the point.
Dinosaurs became birds by a long and random process. Maybe this dinosaur will learn to fly with slightly more grace.
Blaming Obama
I am getting really tired of conservatives of all stripes and some of my old friends who fit that description blaming the Obama administration for the woes of the country. I heard from an old friend last week who had a family member that lost her job after 25 years of loyal work. The layoff occurred in June, and the guy was blaming Obama for it. By my calculation the layoff was 5 months after he took office. No way he could have been a factor.
There are many families, including my own, that are living with increased expenses and reduced earnings. In January when the talking heads were still using the "D" (depression) word lots of us were scared. Then when someone gets laid off in the face of this, the "being scared" becomes real fear. I remember someone defining a recession as when your neighbor is out of work and a depression is when you are out of work. With nearly 400,ooo jobs being lost last month alone, I think "fear" is to be expected. And, unemployment is a lagging indicator, so it will be the last to recover. But recover it will, and America will emerge stronger than ever. Remember Camus " In the depth of winter I finally learned that there was in me an invincible summer" So also is America in a winter, but in us is an invincible summer. Hang in there y'all. We'll get there.
On to a bit of discussion.
The meltdown in the various sectors such as housing, financial, manufacturing and related industries started before Obama took office. They were the product of 8 years (really more than that since Republicans had control of the congress for more than that) of failed policies that de-regulated as much as possible and hoped that the industries would self regulate. They left out at least one important factor in their calculations: greed. During the last 8 years the major operating premise was making as much money as possible by getting as close to the line of disaster as possible. So mortgages were approved for people who couldn't pay them. Then they were "bundled" and sold as an investment commodity. They were rated highly by raters (paid by the folks they were rating for) and when the simple people of this country couldn't pay their mortgage payments the whole thing came apart. This has been going on for at least 8 years and exploded before Obama took office. How can anyone blame him?
Manufacturing has been moving "offshore" for years and jobs have been lost for years as a result. Remember Ross Perot? "The sound you hear is JOBS being sucked out of this country." This substantially weakened our manufacturing sector. So then when a credit crisis hits, the industries that depend on bridge credit can't get it and they go down. Like the giant car makers. Obama's watch. No.
Cars. Bigger is better. Hummmmmm in a Hummer. Drive an SUV. Why? Cost more to buy and drive and insure and you don't need the space. The auto industry was ripe for a fall and fell it did. Hard and far. But the problems that caused it were not on Obama's watch.
Suppose you bought a store that sold clothes and a few days before you were to open it the roof fell in and ruined everything inside. It took months to get the insurance settled and the store repaired and the stock back in. In the mean time you had to lay off some employees. Did they lose their jobs because YOU caused the roof to fail? No, they lost their jobs because the former owner delayed maintenance. His fault not yours. You worked like hell to get things opened and going again and your workers blame you for their joblessness. You know damn well that wouldn't be fair.
Obama is in the same situation. He CAME INTO OFFICE IN A S**T STORM caused by 8 years of failures and he is trying to get the whole country going again.
Don't get me wrong here. I don't like some of the things the current administration is doing and supporting, and some of the things they are doing may not work. But nobody with a brain in their head can BLAME them for the problems. They are trying to find solutions. And by the way, the Republicans are saying "NO" to everything proposed. Most of them even think Clarence Thomas was a better choice than Sotomayor. More HUTA looks like.
If you are offended by my opinions here, I'm truly sorry. But before you get POed at me, stop and think about the causes of all the problems we now face. And you won't see Obama's name on any of those lists.
There are many families, including my own, that are living with increased expenses and reduced earnings. In January when the talking heads were still using the "D" (depression) word lots of us were scared. Then when someone gets laid off in the face of this, the "being scared" becomes real fear. I remember someone defining a recession as when your neighbor is out of work and a depression is when you are out of work. With nearly 400,ooo jobs being lost last month alone, I think "fear" is to be expected. And, unemployment is a lagging indicator, so it will be the last to recover. But recover it will, and America will emerge stronger than ever. Remember Camus " In the depth of winter I finally learned that there was in me an invincible summer" So also is America in a winter, but in us is an invincible summer. Hang in there y'all. We'll get there.
On to a bit of discussion.
The meltdown in the various sectors such as housing, financial, manufacturing and related industries started before Obama took office. They were the product of 8 years (really more than that since Republicans had control of the congress for more than that) of failed policies that de-regulated as much as possible and hoped that the industries would self regulate. They left out at least one important factor in their calculations: greed. During the last 8 years the major operating premise was making as much money as possible by getting as close to the line of disaster as possible. So mortgages were approved for people who couldn't pay them. Then they were "bundled" and sold as an investment commodity. They were rated highly by raters (paid by the folks they were rating for) and when the simple people of this country couldn't pay their mortgage payments the whole thing came apart. This has been going on for at least 8 years and exploded before Obama took office. How can anyone blame him?
Manufacturing has been moving "offshore" for years and jobs have been lost for years as a result. Remember Ross Perot? "The sound you hear is JOBS being sucked out of this country." This substantially weakened our manufacturing sector. So then when a credit crisis hits, the industries that depend on bridge credit can't get it and they go down. Like the giant car makers. Obama's watch. No.
Cars. Bigger is better. Hummmmmm in a Hummer. Drive an SUV. Why? Cost more to buy and drive and insure and you don't need the space. The auto industry was ripe for a fall and fell it did. Hard and far. But the problems that caused it were not on Obama's watch.
Suppose you bought a store that sold clothes and a few days before you were to open it the roof fell in and ruined everything inside. It took months to get the insurance settled and the store repaired and the stock back in. In the mean time you had to lay off some employees. Did they lose their jobs because YOU caused the roof to fail? No, they lost their jobs because the former owner delayed maintenance. His fault not yours. You worked like hell to get things opened and going again and your workers blame you for their joblessness. You know damn well that wouldn't be fair.
Obama is in the same situation. He CAME INTO OFFICE IN A S**T STORM caused by 8 years of failures and he is trying to get the whole country going again.
Don't get me wrong here. I don't like some of the things the current administration is doing and supporting, and some of the things they are doing may not work. But nobody with a brain in their head can BLAME them for the problems. They are trying to find solutions. And by the way, the Republicans are saying "NO" to everything proposed. Most of them even think Clarence Thomas was a better choice than Sotomayor. More HUTA looks like.
If you are offended by my opinions here, I'm truly sorry. But before you get POed at me, stop and think about the causes of all the problems we now face. And you won't see Obama's name on any of those lists.
Sunday, August 2, 2009
On outliving a child. A different perspective
(the source for the somewhat modified scenario below is an NPR program on Autism)
She sat with her head in her hands and said "What would the world think of a mother that wants to out live her child?"
In an earlier posting I wrote that no parent should ever have to bury their child (7/30/09). I was wrong. There is a heartbreaking situation that happens to parents of "special" children, read that as children with developmental or other profound handicaps. Wait a minute now. Don't go off thinking I am talking about infanticide or euthanasia. I am most definitely not. Please read on and see the problem.
The mother quoted above has a teenage autistic child that is unable to care for herself in many ways. She is unable to form new speech, so can't say "I hurt" or "I am hungry" or "I am lost" or anything else. She needs someone to take care of those aspects of her life. Mom is the caregiver. In situations like this, parents carry a profound worry that they will die leaving the child to the capriciousness of the state for care or worse. In other words the question: "Who will take care of and love my child as I do?"
Now with normal (what ever that means) children as they mature they become self-sufficient (more or less). With many special children (who become special adults, but parents usually think of them as children) the degree of self-sufficiency never reaches the level needed for autonomous living. Therefore the worry.
Will this child be thrust out into the world without a chance of survival? Will they be exploited in the most awful of ways? Will they be warehoused until they perish alone afraid sick? Will they die in pain and suffering?
These worries lead parents to the place where they want to be there always for their child, and the only way for this to happen is for the child to die first. As you can imagine the guilt produced in the parent by even thinking this is overwhelming and torturous. But think it they do.
No matter what the sacrifice is, many parents of special needs kids spend 24/7 being sure their child is getting along OK.
Here is the problem. Unless the parent out lives the child, sooner or later the child will be alone and subject to the above mentioned miseries. Ergo the thought and the guilt.
There is no way out for many of these parents either because they won't let go or because there is no safety net where they live. All states have programs for disabled citizens and state sponsored care of one kind or another. The trouble is that the waiting list for services far exceeds the capacity of the states to provide care. So tens of thousands of potential clients are effectively frozen out of any care but family.
Good reasons to hope for a long life for the parent and a shorter one for the child. Try not to judge these parents. Their self recriminations are enough for anyone.
She sat with her head in her hands and said "What would the world think of a mother that wants to out live her child?"
In an earlier posting I wrote that no parent should ever have to bury their child (7/30/09). I was wrong. There is a heartbreaking situation that happens to parents of "special" children, read that as children with developmental or other profound handicaps. Wait a minute now. Don't go off thinking I am talking about infanticide or euthanasia. I am most definitely not. Please read on and see the problem.
The mother quoted above has a teenage autistic child that is unable to care for herself in many ways. She is unable to form new speech, so can't say "I hurt" or "I am hungry" or "I am lost" or anything else. She needs someone to take care of those aspects of her life. Mom is the caregiver. In situations like this, parents carry a profound worry that they will die leaving the child to the capriciousness of the state for care or worse. In other words the question: "Who will take care of and love my child as I do?"
Now with normal (what ever that means) children as they mature they become self-sufficient (more or less). With many special children (who become special adults, but parents usually think of them as children) the degree of self-sufficiency never reaches the level needed for autonomous living. Therefore the worry.
Will this child be thrust out into the world without a chance of survival? Will they be exploited in the most awful of ways? Will they be warehoused until they perish alone afraid sick? Will they die in pain and suffering?
These worries lead parents to the place where they want to be there always for their child, and the only way for this to happen is for the child to die first. As you can imagine the guilt produced in the parent by even thinking this is overwhelming and torturous. But think it they do.
No matter what the sacrifice is, many parents of special needs kids spend 24/7 being sure their child is getting along OK.
Here is the problem. Unless the parent out lives the child, sooner or later the child will be alone and subject to the above mentioned miseries. Ergo the thought and the guilt.
There is no way out for many of these parents either because they won't let go or because there is no safety net where they live. All states have programs for disabled citizens and state sponsored care of one kind or another. The trouble is that the waiting list for services far exceeds the capacity of the states to provide care. So tens of thousands of potential clients are effectively frozen out of any care but family.
Good reasons to hope for a long life for the parent and a shorter one for the child. Try not to judge these parents. Their self recriminations are enough for anyone.
Friday, July 31, 2009
What's the difference between a piss-ant, a psocid and us?
We were lying on our backs in a too-big bed (it was a king, we are comfortable in a double), the window AC was on (it was 90+ outside and the bedroom was upstairs) and rattling nosily. The house, a weekly rental in the Keys, was pretty well infested with piss-ants. You know them. Tiny ants that never seem to cause trouble but annoy by being there. So there we were, looking at the ceiling when she said "are those piss-ants up there?" Sure enough. They were crawling upside down on the cove molding going from one corner across the room to another and then disappearing. Hundreds of them. Both directions. Moving very fast. What the hell were they doing? No idea. When they met on the road they paused and touched then ran on. Occasionally one stopped for a few seconds, turned around and took off the way it had come.
I thought of a big city seen from above. Are we just piss-ants? Well, piss-ants don't think of themselves as piss-ants. If they think at all they consider themselves to be Very Important Ants. Bustling off to work. Keeping home and hearth together. Serving the greater good by being a cog in an immense machine. Are we just piss-ants? Well, we don't think so do we? But a lot of us think of ourselves as just trying to keep home and hearth together. Serving the greater good by being a cog in a vast machine. Hmmmm.
Now psocids. Even smaller insects. They infest almost everything sooner or later almost everywhere. We don't like them because we find them in our stored food and on our books. Are we just psocids of the world writ large? Not really. They do little harm (yes they eat paper and other things that we cherish, but they eat so very little that it takes a really long time to notice the missing glue or paper or cereal). The same cannot be said for us. I remember a line from an old movie where the rain forest aboriginal people's name for white people was "termite". They lived for Milena in harmony with their land, and whites came in with chainsaws and destroyed everything.Piss-ants and psocids are innocent of intent to destroy. That's the difference.
I thought of a big city seen from above. Are we just piss-ants? Well, piss-ants don't think of themselves as piss-ants. If they think at all they consider themselves to be Very Important Ants. Bustling off to work. Keeping home and hearth together. Serving the greater good by being a cog in an immense machine. Are we just piss-ants? Well, we don't think so do we? But a lot of us think of ourselves as just trying to keep home and hearth together. Serving the greater good by being a cog in a vast machine. Hmmmm.
Now psocids. Even smaller insects. They infest almost everything sooner or later almost everywhere. We don't like them because we find them in our stored food and on our books. Are we just psocids of the world writ large? Not really. They do little harm (yes they eat paper and other things that we cherish, but they eat so very little that it takes a really long time to notice the missing glue or paper or cereal). The same cannot be said for us. I remember a line from an old movie where the rain forest aboriginal people's name for white people was "termite". They lived for Milena in harmony with their land, and whites came in with chainsaws and destroyed everything.Piss-ants and psocids are innocent of intent to destroy. That's the difference.
the hardest thing I have ever done
 |
| Until the next time. |
The lesson I learned was that it didn't matter how hard (read that embarrassing risky self deprecating etc) the current "thing" wasn't, when it was over, as hard as it seemed. Sure it was hard to say "I'm sorry I stole from you" (not once as it turns out but twice [another tale for another time]) or to confront an angry husband or quit the team but once done it was over. Not forgotten god knows but over.
So the next hardest thing is around the corner. What will it be I wonder?
Image: http://33.media.tumblr.com/3245c2d5af8c4991ddaae150469736c6/tumblr_n33qjwdVrx1qciesyo1_500.jpg
Subscribe to:
Posts (Atom)
Posts
