Sunday, June 30, 2013

30 June 2013

The unintended effect of depending on codified behavior: or,  Oops we never saw that one coming

I have mentioned all the “rools” around here, and the slavish approach to compliance. Many are explained to be for our safety. Yeah, Right. The way it seems to me they are really about corporation counsel being extra cautious and fearful of some litigation finding its way aimed in the facility's direction.

Take for example the doors are locked from the inside. Don't get me wrong, there are several ways to unlock them. The worker behind the welcome desk (inside, of course) can press a button to let visitors out after they have seen a resident, there is a keypad that one presses the code number into in order to release the door. If I sit and watch long enough I probably could figure out the code (it is NOT given to the residents). This part makes me feel just like some wayward child who is deemed not worthy of trust.

There were two residents the other day who timed their exit just right, so as to follow some visitors exiting the building, to make their escape after the visitors had seen another resident here. But as one of them was in a wheelchair and the other uses a wheeled walker, they weren't going too far. Like most of us, they just want to feel the breeze blow over exposed skin and the wind play with their hair, these two just wanted to sit ouside in the front of the entry door, unimpeded for a few moments. They were quickly shuffled back inside. No fresh air for you.

Nonetheless, the chance to have a staff member take a few residents out for some supervised outdoor time was severely cut back after that.

In my case where would I go? I had to sell my house to comply with Medicaid rules. I have no house, no car, no savings. In fact I am not allowed to own anything worth more than two thousand dollars. Where would I go? The State has made sure that I am made institutionally poverty stricken – on purpose. I did everything right, I originally bought a house years ago, paid off a thirty year mortgage in eight years. Kept going to school to get an advanced education, saved for my retirement, paid taxes, worried about my reprsentatives hearing my views in the State legislature and in Congress.

So what! I qualify for the new national health care program by way of being disabled. MS is considered to be a qualifying disabling disease, due to that I am swept into the federal program. The states are expecred to participate their fair share (ten percent to begin in a few year's time)by using their own medical program (37 states are going to use their Medicaid program already in place. The Medicaid portion is so punitive in its approach that I don't believe that Congress read the bill all the way through and considered its consequences before voting on it. Did Congress really intend to be so throughly disruptive and destructive of citizens after getting sick? No one knows what makes MS affect people, its not like contracting cancer after a lifetime of smoking. I did nothing to get this disease, I don't deserve to be treated this way. But, the rules are for everyone, nobody escapes this basic mistreatment, which is called healthcare. The nonfinancial cost is very noxious.

As I finished my dissertation I became more and more dependant, first on a cane, then on a wheeled walker which I used when I was out of the car. I had the car converted for use with hand controls, which necessitated several lessons from a State approved instructor, training me to be able to demonstrate sufficient ability to apply for a limited driver's license that would permit me to drive my car equiped with said hand controls. At the special Secretary of State office that was designed to retest individuals so in need of driving with mofified controls I ran into the first of many individuals so hidebound by the need for rules, this fellow made his issues everyone else's problem by default.

I had called this office about the scheduling (they make your appointment at their conveniance, not yours). I had been told not to worry about one of the needed pieces of paperwork, it could always be brought in later. The problem was that when I explained this to the driving inspector, his face froze (it was rather stiff in the first place), he turned bright red and acted as if he had been greatly insulted. Everything stopped, my driving exam was rescheduled for some unknown future time, which was again dictated to me at the Sec. Of State's own choosing of time (it turned out to be three months later). I couldn't drive for the whole summer, I had to depend on other people to get groceries for me, it was an introduction to becoming a resident in a facility like this, and how everyone has rules and regulations about you the one with the disabling condition. It almost seems that people believe that if enough rules are established they will be safe. Rules are merely guidelines, like sugesstions they only point one possible route to take. Over dependance on rules often serves to limit, hamper and diminish one's humanity. How is it that such things are allowed to get this far?

Its not my fault, I don't need to be treated in a way that seems so punitive. I just have a disabling condition, I don't need to be held accountable like this.

Here's an example of the looneyness that passes for normal around here. One of the symptoms of my MS is that I basically have no control of my voluntary muscles below my sternum. When I lie down in bed it is in the supine position. I have no control of my adductor muscles. When laying on my back my feet do not point with my toes straight up, rather my feet splay to the outside, each foot poking to the outside as if I were very pronated in my gait. This is very hard on my knees, as they are meant to swing like a door hinge, not rotationally, like a hip or ankle. In order to keep my feet sticking straight up, there needs to be some support aeound my feet. At first we used lots of towels rolled up and stuffed around the feet. This does not always work. Not all of the CENA's understand the need for this packing, some do a poor job of it, some have to be gently guided to pack the towels just right. There is a tendancy to do it fast so as to get on to the next resident. After one of these slipshod foot packings my feet splay out, after seeral hours of this my knees really ache.

In the last facility I was in, they had bunch of these boots specially designed to keep the foot upright when lying down, In fact some of them were so old and heavily used that the velcro straps that affixed the boot to the foot were nearly worn out.
Two views of the boot support

The heel goes into the corner, the long gray foam
block is attached so it can be used on either side.
One design can be used for either foot.

This facility has the same boots, except that each boot is individually wrapped in factory packaging. All of the boots here are brand new.When people leave here and no longer want their boots they leave those boots behind. The Facility throws them out, routinely. I have asked for some boots, but I am no longer able to participate in physical therapy, it is the physical therapy department that determines if one “qualifies” for such a device as this boot. I no longer am able to participate in PT as after a month I was not making enough progress (as measured), so I was deemed no longer eligable to receive any more PT.


Folks, no one ever gets better with MS, its not like having a stroke, there is no improvement no matter how much PT one does. Get a clue.

So I managed to talk one boot out of them, but not two. I have spotted some being dragged away in a garbage sack (large clear plastic bags). I asked the housekeeper if I could have one of those boots. I was told, “No”. They have to be thrown out, she might get in trouble if she gave one to me, it's not sanitary, she said. Right, and the sheets, towels and other laundry I use in here daily is not always brand new, but cleans to a sanitary condition by the laundry daily. I have even seen bed sheets packed off to the laundry that are pretty soiled, they are not thrown out.

Am I to believe that my knees are to be allowed to slowly break down and the cartilage give out, because the concern is that the laundry is only conditionally effective at cleaning and sanitizing the items entrusted to their service. This sequence based on a set of faulty rules makes no sense to me. Is there some magic Pixie dust that everyone is subject to whenever they enter the doors of the facility, that makes everyone dummy down upon entering the building? Does anyone see the foolishness going on here? Does anyone care? Why am I the only one who can see the silliness to this scenario? Is anyone watching?


Saturday, June 29, 2013

29 June 2013

Sometimes being a resident in a facility where there is not much to do, other than the provided bingo and stringing plastic beads to make really cheap jewelry (which really brings me down), I keep to myself. This doesn't bother me so much as I am a fairly strong introvert. Don't make the mistake of confusing introvert with being shy, those two descriptors are not mutually interchangeable. As an introvert I can easily feel drained if I am around people too much, I get my recharge best when I am being alone. Extroverts are, of course, the opposite – I wouldn't expect them to understand. Such joy, what pleasure.

When I am alone I can think. My thoughts soar, I often find myself discovering something, which sets me to thinking, in this case remembering. This came up in me at the beginning of the month before last:

2 April 2013
12:00 PM

I was reading the NY Times today and was intrigued to come across this article: Click here The article was about new discoveries regarding dragonflies. It comes with an amazing video of a frog missing the mark trying to catch a dragonfly. My fancy was captured with the information that in ancient times dragonflies could be up to three feet across. I began to daydream about giant dragonflies. I have always had an affinity for dragonflies, they are so interesting to watch. Their wings flutter independently and seem almost fanciful in their action, how could anything ever fly like that?

Soon I was remembering a time in my garden several summers ago. It was a warm, hot, sticky summer afternoon, sometime in late July or August. I had come home from work and there were a few good hours of daylight left. My garden was situated close to some large coniferous trees which blocked the late afternoon sun, so I didn't have any fear of too much sun exposure. Even though it was a hot day I was in the mood for some good gardening labor, and considering the warm, humid atmosphere, I was even willing to perspire. It turned out that I had to exert very little effort to sweat a whole lot. Soon my T shirt was absolutely drenched. My shirt had become so sodden that it hung way down to nearly my knees. Every time I bent over to grasp a weed or scratch the earth, my shirt would sag almost to the ground, billowing beneath my belly. Perspiration would run across my face gathering at the lowest points on my continence, which was now my nose as it was pointing toward the ground. When I could no longer keep bent over in the working, sweat draining position, I would stand up. My shirt would immediately collapse against my body. Loaded with perspiration it would cling against my skin, reminding me of some sort of flexible cast the would automatically form to my torso every time I stood upright.

The little drop of sweat that had collected at my nose now gathered size and hung precariously for a long pendulous moment, then it would drop from the end of my nose making for the ground. I was amused to consider the phrase, “Salt of the earth”. Here I was contributing to the salting process just by gardening.

There was a routine developing in this late day extracurricular activity. Bend over, work the soil, perspire profusely exuding from my skin, which then drains across the contours of my features, collects at the lowest point. Stand up, more perspiration continues to flow, the small bead of salty liquid forms at the end of my nose, then after a moment of hesitation, drops to the ground.

After performing this rhythmical exercise several times and getting into the repetition of it, another feature became a part of the sequence. A deerfly soon discovered that I was an easy mark for its biting routine. It was that time of year when the deerflies make themselves known , all the time. And they can be relentless too. When I would go for a walk they would come along, unlike their pesky brethren, the mosquito, no walking speed was fast enough to leave them behind. They always were able to alight on the arms and other exposed skin areas almost at will. They did possess one fatal flaw. The would land and the before assuming the head down biting position, take a few seconds to assess where they were and what was about to happen.

This was the perfect time to smack them, although they seemed to have tough exoskeletons for they would often survive the initial smack. It was so distraughtning to have them emerge once I removed my hand to seem to shake themselves off and begin biting again. The trick, I soon learned was to not only smack them, but once the hand had them trapped against my skin beneath my hand, then to keep the hand pressed against the skin and to slide the hand along the skin thus rolling the insect under pressure. Then when I removed my hand this insect carnivore that was so intent on inflicting pain for its daily meal was all curled up unable to do its dastardly business. The husk would drop to the ground. I am not sure if the insects died immediately when I did this, or if they were still live but mangled, only to expire later. I decided not to worry about this as I didn't know.

In the garden my bobbing and ducking to work the garden produced a lot of sweat. I don't know if the deerfies were attracted to the fresh meat that I brought forth to the banquet, or if it was the sweat that drew them in. whatever it was the deerfly brigade had discovered me, meat on the hoof. Shortly after disappearing into the routine of bending and rising upright, the deerflies moved in. However they were orderly about their carnivorous habits. Rather than descend on me all at once in a feeding frenzy as the mosquitos do, showing no sense of propriety whatsoever, the deerflies only landed on me one at a time. And for some strange reason they seemed to only be drawn to that small, salt laden drop at the end of my nose – damnedest thing. Why the rest of my exposed skin was ignored I will never know. But those deerflies would come to the tip of my nose every time.

When one appeared just about ready to land, the familiar clatter of dragonfly wings announced that a dragonfly was about to enter the arena of my presence. The first time I was startled at the sequence of events, but no harm came to me. The sound of the dragonfly close by, never effecting a landing, only to reappear when the next deerfly appeared at my nose. Once again the deerfly was snatched from my nose, or just seconds before it could land. The dragonfly clattered off to await the next feeding.

The second time I was still delighted at the intricate timing and routine of the whole event. I continued to work, ducking down, sweating profusely, standing up, a deerfly would emerge from the surroundings, a dragonfly would noisily appear, the deerfly was snatched, no one was touched save the deerfly by the dragonfly. Once this new routine had fallen into place it continued for about thirty times with out let up.

I got a lot of gardening done, the deerfly population was significantly reduced and the dragonfly population was sufficiently fed, or maybe one of them who figured out how to hunt using a new kind of lure. I had the distinct feeling of really being a part of nature that afternoon. The wet T-shirt billowing out beneath me and the clammy cloying feeling didn't bother me at all. It was so fun to be a part of the choreography of insect catching using real insects. Somehow flyswatters and chemical repellants will never quite be the same after that.

It is always fun to be able to participate with nature.

I have no pictures of my own to show, he is a dragonfly from another blog post.
From Riverdaze, thanks Jim

29 June 2013

Wednesday of this week I had an opportunity to visit with my neurologist. He was very pleased to report that there was virtually no difference in my MRI since the last one a year ago., it was deemed that there was no further progressions in the course of my disease. Good news all round.

It was nice to get out of the facility. My neurologist is located roughly an hour away. There is a service that is equipped to transport people in wheelchairs to various appointments. It was fun to get out of the building for a while. It had been so long that it was interesting to see the vegetation along the highway out in full summer force. Everything looked so green. The last time I had been out was early spring and the buds were just beginning to show.

Strange thing about being disabled to the point where you need extra care doing the regular activities of daily living. Once an individual reaches the point where they need to be housed in a facility, the rules used to operate the facility take precedence over anything the individual may have done or been in the past. The resultant tendency is to lump all residents into the same common pile. This is something I call being reduced to the lowest common denominator. Yes, we all require air to breathe and water to drink. From here it goes downhill rapidly. I don't know what is, there must be something in this older building, my sinuses been playing havoc with me ever since I got here in the beginning of February. This is new for me, I typically respond to the molds that grow underneath the snow cover all winter long. Once the snow melts until the Forsythia bloom my sinuses usually give me fits. This year they have not quit. Granted it has been a very wet spring, but there have been enough sunny days to destroy the mold. I am suspicious that there might be mold in this older building.

As for the water to drink, it's City water. For more than 30 years I lived in my own home way out in the country serviced by my own well. The water was good tasting and since I had replaced the original shallow well with the deep rock well, the water was also very cold and plentiful. Here the water reeks of chlorine and after leaving it stand for a while it has not lost all of that chemical additive taste the city people grow accustomed to. To me it stinks, and doesn't taste good either.

The next commodity to be eviscerated is food. Short of the kitchen staff ignoring completely the use of spices to add flavor and distinction to any product that ushers forth from their doors (which are also locked, presumably for our protection) to taste very bland. I know they can't tailor every meal to every resident's palate. However, they don't even try. For this reason I keep an assortment of spices handy to try and doctor my meal post production.

The imagination of the crew in the kitchen has to be extremely limited. Lunch and dinner usually entail one piece of protein (meat, fish or chicken) some vegetables and some starch. The wealth of choices from which to choose the vegetables and the starch appear to be very limited. For about three days straight, lunch and dinner, sliced carrots was the vegetable selection. The vegetables are usually steamed, never stirfried or any spices added. The starch is most often instant mashed potatoes, served by way of a large scoop that sits impeccably perfect, a rounded hemispherical shape just leering at me from every plate. There is usually nothing added to the instant mashed to disguise the cardboard box flavor of the potato flakes have achieved from their storage container. Have they ever mixed in bits of cheese, no. Have they ever mixed in dill or bits of some kind of meat to extend the flavor of the unusually bland form of potatoes, no. There is just a hemispherical white lump, leering at me from the plate when I remove the cover.

I would make some sort of comment when the CENA brings the meal. As I lift the cover in expectation and that ubiquitous, flavorless, white dome is staring at me from the plate, I comment with a tone of facetious joy, “Oh boy! Another wonderful serving of blandness.” Its just another act to steal away any possibility of joy and delight with the act of eating. Actually another of a long series of continuing effects that combine to make sure no one gets the sense that they may be in charge of anything around here.

It is often said that life in a facility such as this can be very depressing. Also it is said that the disease of Multiple Sclerosis can cause depression. I don't believe that what I notice as depression stems in the MS. Rather, the food offering and many times the presentation that others give me shows a much better reason for being depressed, it is that after years of being an adult and making my own choices, I am now automatically considered stupid and in danger to myself if I even try to get close to what I once lived, did, or imagined. Almost every time I lift the cover when my food is presented, a little more of me dies inside. I used to cook, and quite well too. I know that cooking is not that hard. It takes a little bit of willingness, flair, funk and style to be able to master the art of cooking. Every time I'm served a meal here I am amazed at how these qualities seem to evade people. Look at the slop they turn out. If I produced that, I would be embarrassed.

The only thing I can imagine is that the food staff here is so in need of a job that the just come in and routinely go through the motions, mind turned off, punchthe time card, do the time, go home, eventually get paid. No investment of self whatsoever.

Often served with the ubiquitous white dome are little packets of imitation butter. I was used to use real butter, that which came from cows. Who knows what nefarious stuff resides in these little plastic buckets? They are always soft and can be scooped out with very little effort. The label indicates that they are made of some sort of oils that have been hydrogenated. Nothing on the label gives the impression that this “butter” may contain trans fats, but I am leery.

On some meals protein component is fish. Not a good tasting fish, or a high-quality fish. This fish is cheap fish, usually tilapia or a new one on me, skya. Both are broiled way past being a lightly cooked white fleshed fish. Rather, they are nearly singed and dried right out. At least they serve a little packet of tartar sauce to semi-rehydrate the nearly desiccated protein source. Any beef is always produced well done. I have asked about this and have been told that State regulations insist that beef be cooked to the well done state. It appears as long as I live here I will never taste medium rare or rare beef ever again. Same thing with eggs, the new food preparation company indicated that no longer will eggs be fried over easy. They hide behind State regulations as to the reason why. Supposedly, breaking the yoke and letting the yellow part of the yank cook until no longer runny is healthier, it keeps us from getting sick from bad eggs. Funny, I always cooked my eggs steamed under covers, which produces nearly the same thing as over easy. In all my life cooking my eggs the State never came skulking around to see if I was going to get sick. Also, I noticed that some of the ads on television show Denny's restaurants and other restaurants advertising soft yoke cooked eggs for sale. I don't believe that the State has 2 tiers of rules, one for the poor slobs in facilities, and another, much looser, rules for restaurants. If it is true as I have been told that this is for my health and safety, that the State is mandating this, I would suggest the State go bother the egg and beef producers to make sure they don't serve us tainted products from which we want to make our meals, rather than dictate to us how we are going to eat that meal.

We are, after all, disabled people, trying to maitain our dignity. The State doesn't need to pick on this population, they seem to be somewhat misguided. From my experience, it is easy to pick on people with disabilities, I see it happen all the time. Disabled people can't run away and they certainly have very few tools with which to fight back. All that is needed to have the arrogance of a care giver is some authority and a sincere sense of righteousness, then you can do just about anything to disabled people, because you are helping them, whether those ingrates like it or not.

This is just more of the many examples of how blind adherence to rules and code of patient care just serves to undermine individual's attempt to enjoy themselves and be more fully human. What surprises me is that everyone who seems to be in line above me (in these facilities that I have been in) gives lip service to care and concern for the individual, but the first thing they will do is snap to and blindly follow whatever the State wants them to do. I always thought that the State was there to be of service to the individual. From everything I've seen it is been just the opposite. The State machinations seem to be blindly adhered to by those in charge, and bent on furthering the State and mangling the individual at whatever cost.

I am used to this though, I've always been out of sync with whatever group process I find myself in. Always through school the teacher ran the classroom as a strict authoritarian. Those who did not blindly follow the rules were separated out from the group and set up for ridicule special negative attention, in an effort to get them to blindly adhere to the expectations of the authority figure. I look back and can see that this was true for my entire grade school career with the exception of 2nd and 6th grade. Those 2 teachers were delightful and encouraged self-directed exploration. The others were miserable creatures who obviously had no fun doing what they were doing and therefore they made everyone else miserable as well.

High school was more of the same, both junior and senior high. I look back at those years and can find only two or three teachers that made going to their class entertaining, exciting, and an act of sheer joy to walk in the door to their classroom.

It wasn't until I was working on my Specialist and later my Doctorate degrees that I read research by several progressive thinkers in education that this is pretty much standard for just about all education throughout the country. What passes for education, is most often indoctrination. Students are forced to learn by rote the information they need to know to pass the test. Those who don't are destined to be called failures. The indoctrination is into understanding which are the accepted answers and ways of behaving. Perfect socializing for the next generation of consumers citizens robots. The sad part is that almost no one can see what has been known to them.

This may be because the entire education/indoctrination system depends almost entirely on facts, linear thinking and left hemisphere functioning. Anyone who dares to use the right hemisphere, even minutely, is quickly discouraged and hastily ushered back into the world of left hemisphere thinking exclusively. Thus graduates from our educational system are often emotionally shriveled, lacking in compassion, and they're set up to be loyal consumers, which our present society seems to need in order to survive.

Those who have a tendency to be “freethinkers”, right brain oriented, or in any other way outside of the mainstream, have a tendency to be marginalized by the rest of population. This was to group people so well indoctrinated into what they are doing, that they fail to see that which they are doing easily. Thus like so many self- maintaining robots, they continue going about the task seems to be set for them.

Having gone through this whole educational process, I shouldn't be surprised to see so many people who seem to be so unable to step outside of the method of operation utilized by most of the population. It is always a delight to come across someone who has somehow, in some way, found a way to step away from operating in this, and most often used cultural method.

I found the people who have meditated, or are involved in the arts, or had of found a way to listen to their inner voice speaking loudly to them, all of these people I find to be a delight to interact with. They enter the room with joy and freshness radiating from them as they come forward. There is an excitement, a glow of ready openness that comes with them. I see these people as excited to share what they have experienced and are willing to hear of my experiences. The real meeting of the soul, so we each meet the part that exists behind the personality. Sadly facilities such as this one are not designed to encourage this type of person to either work here or to come visiting. I miss people of this sort.

Here are some views of many of the meals served lately. Notice the small volume of portions, the ubiquitous lump of white starch, the lack of a presentation to augment the meal, and the exstremely dull nature of the selection, which goes a long way toward reinforcing the lowest common nominator factor.
A lite meal, Tube steak and a lump of white stuff. Am I being punished, or what? 

Political statement - or playing with your food.

Chicken, green and white, I don't care.

Hooray! Rice instead of white stuff, green beans and the other white meat

Political statement about white stuff

Broccoli (trees), chicken and ... more white stuff!

Carrots, White stuff and a bite taken from a hamburger (I couldn't wait)

Another uninvited lump of white stuff

Tube steak, carrots and the ubiquitous white stuff

Real fried potatoes (rare event), chicken and green bean casserole

A scoop of tuna fish, carrots and white stuff

Ooo, yum a real baked potato, sour cream and spices

Until next time, I will be seeking to reinforce my grasp on humanity and rise above the pedesrtian sameness.

Friday, June 14, 2013

14 June 2013
Somewhere in the afternoon

From the Land of a Thousand Televisions: all playing at once

View from outside my room looking South

Resident's rooms are on the left. Old art is on the wall,
due to long term exposure from the fluorescent light the colors have faded

Here at the reservation, each room has two televisions. One per resident. When I roll down the hallway I am treated to a cacophony of vying speakers trying to compete for my attention, as if what they had to offer, I cared anything about. Announcers and gameshow hosts, various advertisers and car salesmen raising their voices in an effort to make sure that their special message is distinctive over the din. No one realizes how ridiculous this all seems when taken as a whole. Shouting, commanding attention, in an effort to be distinctive from everyone else, when there is no distinction to be made. 

Who cares which doohickie is whiter, or if the latest model EMX4000 can get 59 miles on a teaspoon of gas? Its all about stuff and things. Superlative comparisons only invite separation. People are lead away from being able to connect with one another. Hardly anyone is aware of the self behind the facade. That which has no name and so is therefore not well examined as we have no words for what we find there. In fact most people have no idea that there is something behind the facade. They take the facade to be the thing itself.

It is the same with self and the relationships we all know and take for granted. Most people identify themselves as that which they know as their name, or their history, or by the possessions they own. These are all markers, convenient tags that are conventionally known and understood. They are tags or popularly understood “bookmarks” that direct our attention to that awareness that resides behind the facade. What is interesting is that this awareness is always noticing, without judgement it constantly takes notice of it's surroundings. Then very subtly and quickly the left hemisphere comes on board to interpret everything, and put everything into order. 
View from outside my room looking west.

Appealing, No?
Just think, you too could live here as well.

This left brain is very dependent on linear sequencing, loves rules, finds a reason for everything and loves to makes sense of all of it. It is closely allied with another part we mistakenly believe to be ourselves, the personality. We are not our personality. This statement is somewhat inflammatory to a lot of people as they identify strongly with their personality. To paraphrase a statement from Charles Tart, we are not our personality. Rather it is a construction of our own design, built up over a long time, that we use as a vehicle for making our way through life. This is as if people confused themselves for their car. You may own a Buick and it may take you to the store or across country on vacation, but do not confuse your Self to be your conveyance device.

This discussion brings me back around to the land of a thousand televisions. Not only is the onslaught continuous 24 hours a day, and most residents here have theirs on at many volume levels (mostly loud), but it is so sad to hear so many televisions being used as electronic babysitters, pacifiers and best friend substitutes for the families and acquaintances that just never seem to come by to see their relations. As I roll off the elevator and down the hall to the sanctuary that is my own room, I feel the pain, the loneliness, the wishing for distraction from this endless, highly limiting situation that many have found themselves in, here at the reservation. No one listens to radio. In fact unless you were to bring your own, they are not provided here. Its a shame, a medium that could soothe and expand one's soul is not utilized, but one that is so ubiquitous as to be as obvious as wallpaper and equally as bland, is rampant. Oh well, so much for nursing homes being a place of bodily, emotional and essence healing. For the evidence I see the material, that which can be easily seen and touched receives the most attention. Sometimes when I see other residents at first glance their faces appear so blank, without expression, so joyless.

At some deep level, behind the facade, I can see why.

We are all starving for something.

Thursday, June 13, 2013

I wrote this the other day, conditions beyond my control kept it from being posted, until now. Enjoy!

9 June 2013
12:00 PM

Enjoying the Ineffable
Remember: The Experience is Personal

I think that I've mentioned this before, but if you don't recall, I'm an introvert. If you didn't know, I'm still an introvert. Every time I have completed the Myers – Brigs Personality Inventory I always show to be an introvert. * Not just part way into the introvert range of the scale, but way to the side, nailed to the wall introvert. Many people make the mistake equating introversion with shyness. Do not make that mistake. Growing up with bright red hair and being the biggest kid in my classroom, I was never allowed the chance to be shy, my phyical presence took care of that.

Oh, there were moments when we as students endured the teacher's misguided forms of controlling a classroom of unruly youngsters just wanting to be who they were and eager to interact with the world. Sitting still and raising your hand to get recognition first in order to just to make a comment about what was going on was nearly intolerable. The situation was made worse when yon teacher (She was always yonder because often the class seating was arranged alphabetically. Sometimes the teacher would, at semester's change, reverse the seating in order to give everyone a chance to sit in the front, as if that were some sort of privilege. I never had the opportunity to discover if sitting up front was what it was hyped up to be. I was so big that I got to sit in the back of the room perennially because, I was told, the others couldn't see the chalkboard around me. Thus the teacher was always at a distance from me. Hence she took on the qualities of someone far from me, or yonder.)

I was happy being left alone. If things in the classroom got boring (as they often did) there always was a large bank of windows through which I could always cast my attention. This brought up two interesting situations. One) if I wasn't wary and disguised were my eyes were the teacher would call on you in front of class, this was a mild rebuke and an underhanded way to use peer pressure and mild situational ridicule to keep the attention of the class within the room. Everyone disliked her for this. It was sneaky on her part, and showed that she was willing to foment a form of divisiveness in the classroom in order to maintain her dominant position as Dominatrix of the educational process. Two) If I managed to become so enamored of what I was so easily available just through those windows, I quite easily lost track of monitoring the dullness happening in the classroom. My attention was totally fixed on the squirrels hopping about on their daily business, making erratic moves, punctuated with hesitant start-stop movements, furtive committing to one direction then reversing in another, they were the Don Knotts of the animal world, just on the other side of that quarter inch glass. In just a flash they could become as smooth and quick as a race horse, undulating their way in one direction describing a smooth wave form just like on an oscilloscope, their erratic movements and slinky nature was way more entertaining than whatever Mrs. Fullofherself had going on.

The sad part of this was that she had a bad habit of interrupting my wonderful out-the-window-education. For some reason she thrived on everyone's undivided attention. Its sad that she was so needy. In hindsight, I would have thought that the school board would have hired more understanding teachers, we were no there for her fulfillment of her own issues, whatever they were. The other sad part was that she was not as entertaining as she thought she was. Her entertainment ability was nowhere close to what was happening just outside of the window.

Third grade, forth grade and fifth grade followed this same pattern. Dull teachers running a very dull show, and trying to make the mutineer, renegade, rebels among us yield to their social deficiencies. Thank goodness that particular school was in a wooded setting and there were plenty of windows. By the time I got to the sixth grade I had learned what to expect from the teachers, the natural world had taught me a lot. It was a shame that school dominated so much of my time. I learned that adults in positions of authority often had no idea what it was like to try to interact with children. (Only years later when I was deep into my studies of psychology and taking test and measures courses did I get an opportunity to find out exactly how far beyond most people my intellect was. No wonder I found standard school so boring. They were aiming for a common level that I could see in my rearview mirror, I had been there and gone a longtime ago.)

Looking back at those very instructive years, I learned most of the academic stuff on my own. Granted we had reading class, but it seemed more of an impediment than a situation to learn.listening to others read aloud while waiting to have my whack at it was intolerable. I often read to myself racing many pages ahead. When suddenly it was my turn, the teacher had to call my name gently to bring me back to the present, where the class was. I would inquire as to what page we were on, upon finding out, I would turn back to where everyone was waiting, read my two paragraphs, then flip the pages back to where I had left off.

I remember one of the girls in my class telling me in all honesty that she thought that I was obnoxious, because I was never where the class was. Who did I think I was? She was one of those students who hung on every word the teacher said, sat still in her desk and when she wasn't doing anything she put her hands, folded neatly, on top of the desk and sat patiently, looking stright a head, waiting for the teacher's next directive. The curious part of me had no time for that. If the teacher thought that I was going to sit by quiet and compliant while she might get around to the next item of business... well, I'm not made that way. I can see through most situations and people like a glass of water. It shows to me very easily if someone is going through the motions “teaching” (read indoctrinating) me and if they really want to make it possible for me to learn. There is a difference.

Mostly for me school was a tedious series of social learning opportunities about how authority figures like for things to progress, interspaced with moments of “aha”so this is how the universe works. I got glimpses of the way to understand things using the linear way of seeing things, and then I let the holistic understanding just dawn on me. Not only was it effective, but it easily became my own, not something I had assumed from some authority person who told me what I should know.

So I am very used to being by myself. Rather than feeling ignored I feel as if I have been granted a reprieve from being held hostage to the acculturated norm. It is so freeing, to not be held to the day to day behaviors and expectations of others. That being said, I thrive on being met by others where I am, not where other people want me to be. The times when people can be with me as a human being with needs and wants specific to who I am are wonderful. These opportunities are rare. I am thrilled when that happens. The sad part is that it happens so rarely.

Most of the population are extroverts, approximately 75%. Most of our mass communication mirrors the extrovert trend, which leaves most introverts behind. In my practice I had noticed that most of the people who seek therapy assume that something is wrong with them. This is the unspoken message that they get from the rest of society. Nobody is telling them overtly that there is something wrong, it more subtle. The implied message is to be like everyone else. Get up get out, party hearty, dance like nobody's watching. Well that may sound good to others, but it certainly holds no flavor to most introverts. A lot of my previous work was helping people see that there is nothing wrong, they just are different from most other people, and how to be comfortable with that. So most introverts naturally feel estranged from the way nearly everyone else acts, the very foundation behind the behaviors is so foreign to them.

Even though I was comfortable with my nature, it took a while before I could put words to it so that the thinking part of me could rest as easy. Our thinking minds are bound to using words, thinking, linear thoughts and arguments before it can rest easy. That thinking mind is dependent on a narrative, and it has to make sense. In fact it wants to have a final resolution that sometimes it will accept a tenuous conclusion because it gives some semblance of finality to an impossible problem. Often this can result in some strange beliefs, like superstitions. As much as the linear mind wants surety and to be in charge, is the most comfortable being dominant, the other part of our mind is amazingly silent, recognizes nearly everything as soon as first seen,is almost always correct, sees everything as a whole without needing separation,and does not have to be competitive. Everybody has these capabilities, but most people have lost the ability to recognize this silent but thoroughly effective part of them since near the end of childhood. During my early elementary school years I managed to be able to maintain selective access to this ability, thanks to the inadvertent help of my many teachers and their total devotion to their favored adult-like way of doing just about everything. Once I learned of the bicameral brain and the specialities of each, I realized that in my own nonsensical way I managed to keep my avenue to the right hemisphere intact.

To this day I enjoy being by myself, in the woods, where words serve no purpose and I seem to naturally belong. I used to live in a rural setting within a state nature reserve. As often as I could, I would walk the various trails throughout the area. I would take my dogs along on these walking visits. Sometimes I would come upon a visual that provided enough material to make an interesting statement.

The label on the package calls them Jelly Bird Eggs. The name seems to fit

Nest of a different sort

* The MBPI is not one of those tests that one can habituate to, as in many IQ tests in which memory and recall could influence the results. Since people tend to show different aspects of their persona in different conditions, multiple exposure to instruments like the MBPI actually show more of a zeroing in on an accurate type indication. 

12 June 2013
12:00 noon

Loss of Humanity

I had a bad day yesterday here in the reservation. It started fir­st thing in the morning while I was having one of my, twice a week showers. I was naked and without my glasses, already seated in the shower chair about ready to go under the water, complete with soap washcloth and shampoo. A knock came at the door. The CENA who was working with me announced, “Patient care”. This often indicates to the person knocking but they are busy attending to the resident behind the door. The implication is an invite to come back later. In this particular case it was a nurse knocking before entering. Rather than retreat momentarily, this nurse proceeded to enter the room anyway.

I knew exactly what was about right away. I've had ongoing affrontive contacts with her ever since I've been here. She does not speak much, nor does she make eye contact with you. She shows the personality of a bulldozer and is willing to continue whatever her task is no matter what situation you present at the time. She indicated that she had to perform this TB skin test. I have had these before. I know what they entail. The CENA was put off by this woman, but she did acquiesce. I requested that I be given my glasses, as I am so nearsighted that I really feel quite at a disadvantage not being able to see. The bulldozer nurse indicated that she didn't need to see anything to be able to administer this TB test, and then she grasped my wrist and extended my arm, interior portion aimed upwards.

Through the out of focus haze that was my vision I could see her moving her other hand in position over my elbow. I knew she could feel me tense through her hands. She indicated this won't hurt just a little poke. In all my career of interfacing with various members of the medical profession, I have always heard this. Of course it doesn't hurt, ... them. I'm the one with the nerve endings that are being violated. Bulldozer nurse proceeds to give one poke and withdraws the needle saying that wasn't good enough. She then places the needle against my skin again and apparently affects a good enough injection site to deposit whatever magic juice they insist on placing under the skin to make sure that I don't have TB.

If I contracted TB it was while I was in here. I have only been outside the building about 6 times since the beginning of February, 4 of those were sitting just outside the front door enjoying a little bit of sunshine and some breeze in my face. Who knows what quality of people they bring in from hospitals and other locations of highly infectious diseases.

Away from the assault during my shower to being dressed and placed in my wheelchair, which is normal. I rolled up and down the hallways and rode the elevator downstairs, making the usual circuit of the limited possibilities that I can experience while inside this facility. It doesn't take much to see all of the sites that are available to me. I spoke a little with the woman who works the front reception desk, who has helped me in the past by sending faxes, discussing pertinent issues, and news of the day. Then I noticed my left knee starting to do with the old familiar ache which happens mostly when I am in the grip of the wheelchair position for more than half an hour.

This ache is due to the fact that when I lay down on my bed, I have no control of the adductor muscles in my legs. My feet naturally splay to the outside putting tremendous torque on my knee joints. It does not take a genius to figure out that the knee joint operates as a door hinge, and this rotation of feet the puts a lot of stress on the cartilage and ligaments in the knee joints. I've discussed this problem with the physical therapists, who seemed to be the gatekeepers in charge of allowing certain devices and helpful medical aides to be dispersed. I've been told many times that my insurance (Medicaid) does not allow for the boots that are designed to hold the foot in an upright position while lying supine in bed. That's fine from some administrator's point of view, a person who can only see paperwork on the desk in front of them. But that is not near as sufficient an answer to the person suffering the insult to their body that the abuse the insurance bring with it, needs to hear.

After some “creative complaining” to appropriate gatekeepers one brand-new boot, already wrapped in its plastic container fresh in the manufacturer was pinched from stock and given to me. Since my right knee was the one that was hurting the most at the time, we(the CENAs and I) had been placing it on my right forth ever since. However, the left foot continues to flop to the outside whenever I lie down. After a couple hours of this my knee really begins to ache. This sensation exists throughout the night, often into the next day, and really shows up when I am seated in a wheelchair and my knees are in a permanently bent condition for the duration.

I have been taking extra supplements that are good at keeping elder cartilage more lubricated and flexible. I have been buying these on my own for a number of years, it does not surprise me when many of the nursing staff query me as to what is this stuff and why do you take it? I am used to these kind of highly assaultive questions. It seems that many nurses only believe that what they learned in nursing school is to be trusted. Everything else is suspect. I can always tell when their inquisitive style begins to hammer at me, showing their bias and state of disbelief. I am surprised that e use of these supplements bothers them. Apparently the continuing ache in my knees doesn't seem to bother them in the least. Some people are just out of touch.

Away from the assault during my shower to being dressed and placed in my wheelchair, which is normal. I rolled off and down the hallways and rode the elevator downstairs, making the usual circuit of the limited possibilities that I can experience both inside this facility. It doesn't take much to see all of the sites that are available to me. I spoke a little with the woman who works the front reception desk, who has helped me in the past by sending faxes discussing pertinent issues, and news of the day. Then I noticed my left knee starting to do with old familiar ache which happens mostly when I am in the stage of the wheelchair position for more than half an hour.

This ache is due to the fact that when I lay down on my bed I have no control of the adductor muscles in my legs. My feet naturally splay to the outside putting tremendous torque on my knee joints. It does not take a genius to figure out that the knee joint operates as a door hinge, and this amount of rotation puts a lot of stress on the cartilage and ligaments in the knee joints. I've discussed this problem with the physical therapists, who seemed to be the gatekeepers in charge of allowing certain devices and helpful medical aides to be dispersed. I've been told many times that my insurance (Medicaid) does not allow for the boots that are designed to hold the foot in an upright position while lying supine in bed. That's fine from some administrators point of view, a person can only see paperwork on the desk in front of them. But that is not near as efficient an answer to the person suffering the insult to their body needs to hear. Dumb ass, Medicaid.

After some creative complaining to appropriate gatekeepers one brand-new boot, already wrapped him its plastic container fresh in the manufacture was pinched from stock and given to me. Since my right knee was the one that was hurting the most of the time we placed it on my right foot ever since. However, the left foot continues to flop to the outside whenever I lie down. After a couple hours of this my knee really begins to ache. This sensation lasts throughout the night, often into the next day, and really shows up when I am seated in a wheelchair and my knees are in a permanently bent position.

I have been taking extra supplements that are good at keeping elder cartilage more lubricated and flexible. I have been buying these on my own for a number of years, it does not surprise me when many of the nursing staff query me as to what is this stuff and why do you take it? I am used to these kind of highly assaultive questions. It seems that many nurses only believe that what they learned in nursing school is to be trusted. Everything else is suspect. I can always tell when they're incredulous with my answers. There is always this tone of disbelief in their voices.

After too long in the wheelchair, my knee talking to me, being around too many residents fighting and bitching at/with each other like little children, I had had enough. I retreated back upstairs to find some help getting out of my wheelchair and into bed. My timing was bad, it was the end of the day shift and the second shift was due to come on soon. With that studied practice of not being able to see me while walking right past me, every CENA had that non seeing way of looking right past me as if I was invisible. I made several verbal requests, that seemed to not be heard the closer the end of the shift approached.

Fighting the fatigue that only MS patients know, I wheeled down to the nursing station, knowing that the incoming CENAs congregate there to divide up their workload based on how many residents there are on the floor that day. Strangely no one was there. I couldn't keep conscious any longer. Last thing I knew it was just past two in the afternoon. My chin dropped down to meet my chest.

I was aware of doors slamming, alarms sounding, people making entirely too much noise. I could hear a lot of activity going on around me, but I was powerless to do anything about it. I was exhausted. The amount and number of voices around me sounded like a party happening all round me, yet I could not respond. Then the woman whose job is to run the floor Zamboni, touched me on my shoulder, saying that she had to get her machine through to get her job done.

I came flying back into my body with a huge jolt, I reflexively struck out with both my arms. Several people found my response amusing and were laughing. As I shook myself aware I realized that they were laughing at me. Biting of my best acid retort, I called them to shame for allowing a resident whom they knew to have a neurologic disorder to be used as comedic relief for their benefit and other forms of abuse.

I wanted some help getting out of my wheelchair and into bed, NOW. Sleep came quickly once I got into bed, my knee hurt terribly. I couldn't shake the feeling that for most of the day I sustained constant and chronic draining away of my humanity by the regular and persistent pursuit of business as normal for what goes on around here. I am tired of being warehoused. I am more than just a body, to treat with the practiced disregard that so many people do when the just try to meet the regulations of what is expected of them. Stop with the codified expectations, take a chance, be real, don't hide behind that air of professionally perfect behavior. You're not winning any prizes here, I thoroughly despise being treated as if I were some object without feelings. I am a person,not the resident in room 322. HIPPA be damned.

Friday, June 7, 2013

6 June 2013
2:30 PM

Its tough being a dietary cripple in a world that pays little attention to producing food for people. So who do the producers produce food for? Why profits, of course!! Wheat flour is added to many foods, I can't think of a good reason why, except as fillers or as thickening agents. I don't know if the use of this ingredient was economic or an integral part of a recipe that depended on this as a key element.

I have had celiac disease symptoms for 44 years. Once it was determined what had been causing my gastric distress, I quickly learned to avoid eating anything with gluten in it. This included developing a critical eye to reading the ingredient listing on package labels. I also learned about cooking, what ingredients are used, why they are used, and what the effect is on the cooking process. While there are other ingredients that can act as thickening agents, they may be cheaper in bulk, have unique or different effects on the flavor or consistency of the results. Then I found that there were federal subsidies for wheat farmers but none for those who produce arrowroot or cornstarch (well there are corn subsidies, but not cornstarch). While in the early years of my celiac adventures, the impression that I was facing an uphill battle. It began to look as if I was truly an outsider in every sense of the word. Hardly anyone I knew had heard of not being able to digest gluten wheat.

Most folks had no idea what gluten sensitivities were or that anyone could have difficulty with such a common, ubiquitous food. I often had questions to answer that ranged from honest inquiry to honestly not knowing and truly incredulous. People wanted to know if I swelled up like a balloon with just contact, as in handling a sandwich. Other people had such difficulty understanding the concept they were asking if I could eat potatoes. Really? Potatoes! It soon began to feel as if I had some orphaned disease.

I learned that the number of people who have gluten sensitivities is one in 150, pretty pervasive. Now, I understand there is a blood test that can be used to determine if someone is negatively responsive to gluten, it measures antibodies. Many people are possible sensitives but are asymptomatic – at the present. Wheat naturally is a cathartic agent. To some degree most humans digestion tends to turn a little loose when wheat is eaten. But the nature of this is not as disastrous as when one has celiac difficulties.

Personally I have discovered that avoiding gluten is not that difficult, except when visiting restaurants. It was during those excursions that I really felt as an outsider, so many foods are made or prepared with wheat flour. I used to inquire of the waiter if I had any concerns before ordering, if my order was gluten free. Most restaurants didn't mind checking for me. Gradually more eateries began to have more gluten free foods, soon the menus began to list which foods were gluten free on the menu by each item. Then the menus were declaring that they were gluten free on the covers. Grocery stores began stocking gluten free labeled items and soon there were whole isles dedicated to gluten free foods. Suddenly everywhere gluten free foods were appearing, it was a very quick change. Suddenly I no longer felt like some kind of interloper in my own community.

Then I end up in the land within a known world, nursing homes. I have been in two facilities during the last year and a half. While there are some differences, there are very similar aspects. Each facility has a dietician with whom I have a meeting explaining my dietary restrictions. In each case they give the impression that they understand. In both cases the method of providing gluten free meals is to practice elimination serving. Oh yes there are some gluten free foods served regularly, like rice crispies instead of oatmeal (yes I know that oatmeal has no gluten in it, but it is recommended for celiac suffers to avoid it as the same equipment used to process oats is used to process wheat, and there is thestrong possibility of cross contamination) In one facility the decision was made somewhere that I would get cream of rice everyday for breakfast. Now I like cream of rice once in a while, but every day!! One has to wonder if someone was pissed off or if some kitchen gnome was so entrenched in the production of their duties that they never considered how mind numbingly monotonous this could be. Peanut butter and or brown sugar would often be sent up, which I would eagerly mix in the gruel like substance. Sometimes for variety I would canabalize the little jelly packets included to be spread on the gluten free bread/toast that was sent up too.

The consistency of the cream of rice was variable. Sometimes it was so stiff that it was like sticky sand in the bowl. A spoon slipped into it could remain at a rakish angle if let go mid-swipe. Other times it was loose as porridge, all runny and dripping off the spoon when dipped up for the next mouthful.

The present facility often substitutes instant mashed potatoes for items on the lunch or dinner menus that I can't eat. One perfectly rounded scoop of instant mashed, served up relentlessly as predictable as the next tick on your quartz timed, battery operated clock. Instant mashed is a pretty bland food, it often has the same flavor of cardboard as the box it is shipped and stored in. It would be possible to mix in some onion, shallots garlic, cheese, dill, or some little meat on occasion to make the instant mashed more palatable, but this is not done. Come on, lets try a little creative expression here. Not a chance. Almost every day, twice a day in some cases (lunch and dinner)the same bland lump of well sculpted, perfectly round starch, designed to be short term filling but in no time at all, productive of a sugar spike, leaving a ravenous hunger in mid afternoon.

Instead of sending up some instant mashed, the sense I get could be just as well received as if a nice hand written note was under the lid of my next serving that read “Nyeah nyeah, this is all we think of you. Eat this.” soon I could not believe the regularity that the instant mashed was arriving, it was at once simultaneously humorous and galling. There were not enough words to describe on continuing onslaught of instant mashed.
I began making photographs of my meals as they arrived. Rather than vocalizing about the march of the potatoes, I thought that I would let the images do the talking.

These are the pictures of all the instant mashed that have been served to me since the 26th of May this year. I began to grow suspicious of so many servings of the same thing after a while, so I began taking pictures. To me this series points to a definite lack of imagination, let alone concern for trying to not be monotonous. I don't know if this is by design, as I am housed on the rehab floor where everyone is expected to stay a while and recondition themselves before going home. This sort of consistency certainly seemed designed to motivate someone to leave sooner rather than later.

I'd want to leave too, if I just had a home to go to. Meanwhile I look at the meals as calorie loading episodes, just like your car doesn't particularly which brand of gasoline it is filled with. This is food to survive, not to thrive. I suppose that I shall have to look elsewhere for my thriving.