17 July 2013

Wednesday

10:00 AM

Its the small but obvious invisible little things that bring Life to life

Lying here in bed, which doubles as my study, business office, partial bathroom, dining area, and in general the place where I spend the predominance of my life anymore, I was idly thinking over local events and the similarities to my former life in the vertical world. I recognize that several of the CENA's here actually do like me. I can tell by the extras that can be seen in their communication. Most people don't realize there is more to communication than mere words. In fact those who study such things have found that using words only offers 22% of the activity of personal communication. Yep, less than one quarter of what we put out there is the stuff of dictionaries, our old high school English classes, all of those papers we had to produce, and the dreaded proper punctuation and approved written language formats we were continually cautioned to adhere to. Most of that was situational, driven by people who drew their paycheck by trying to enforce such restrictive styles on us. In many ways, they were successful – situationally.

In real life, that which we could hardly wait for, between classes in the hallway – we could relax talk with our friends, use slang to describe things, crack jokes, spread gossip, in short be real people, which we seemed to do natively without taking an assigned seat, raising one's hand and waiting (forever sometimes) to be acknowledged AND indoctrinated with those lifeless facts. Some people were always known for being able to always be there, bringing themselves more fully into the present and thus swaying others to interact with them. Sometimes this might even occur during class time, which usually didn't make them too very positive in the teacher's eyes.

When I was in college, while working on my Bachelors degree, I took an elective creative writing class. It was not related to any of the other classes as far as a declared major or minor was concerned. I was attracted by the title creative writing that attracted me so much. The first thing the instructor said was that we hadn't ever really learned to write truly as people actually are when they are being themselves, No we had been taught to use proper English as it is literally used, but very few people speak that way, what we had inadvertently learned was Engfish. Engfish, we were told, was a pseudo language that we learned for the purpose of writing papers to influence our teachers that we knew more than we actually did, and thereby get a better grade.

“It's insulting !” he bellowed in mock anger. “To your instructors it smacks of sucking up, much like a preadolescent speaking in the manner and stye of a Nobel Prize Winner while chewing gum and throwing in a few “ya knows' to move his presentation along. It speaks loudly of insincerity he sniffed while mocking disappointment.

The bulk of the intent of the class content was summed up in that demonstration/statement. Actors are better communicators than anyone, because they put everything into it. Tone of voice, pacing, inflection, accent, facial expression, filling the space with the whole of the body, gestures, coordinating all of this to come together in a complete package to deliver the entire message so there is no mistaking the content when it is delivered this way. If we had to continually add what we believed the content should be, or make accommodations for the actors, that minor bit of audience input separates us from losing ourselves to the story being presented.

Even a person delivering facts with none of the extra additions of fully being present comes across wooden and without presence, Al Gore is a good example here. Al seems to be a nice guy and he certainly knows his material, but coming close to the Pied Piper of Hamlin might be a stretch. If you want to convey and convince people there has to be a sense of someone there. Not very many people warm up to an encyclopedia or a text book very well.

Back to the CENA's; last night, just before the end of the second shift, one of the CENA staff who has taken care of me on several occasions, stopped by just before she was due off the floor. Every day as the CENA's come on to work and due to the fluctuating nature of the number of residents they have to work with, they divide the rooms (and thus the residents they will work with) so that the work load is not so lopsided. She had a few moments and every one was under control, so she stopped in to say hello, that she had seen me when I was up in the wheelchair earlier that day but she wasn't working with my part of the hallway so she couldn't stop to visit with me. She was really animated as she talked to me. She was concerned that I didn't feel that she was ignoring me. I assured her that I never considered that at all. At that point I realized that the were several CENA's who also could be standing in the same spot next to my bed saying exactly the same thing. They all exhibit similar characteristics. They bring themselves into the work they do, they make contact and don't give the impression that they are just doing their job. Some of the people here act as if they were afraid to show themselves in nearly every situation. Those are the ones who speak little, make minimal eye contact, seem to look right through you or just past you when they speak at you. These are the ones who take a message that you want some Excedrin for the headache you've got raging and thirty minutes later the nurse still hasn't arrived (the CENA 'forgot to deliver the message).That's when it gets aggravating being here, not able to do for myself what I have grown used to doing.

There are just enough events that impact me that are influenced by factors beyond my control, that can be really aggravating . It doesn't matter what I want or need, or even if I ask nicely or if I am told that the person will convey my my wishes or conduct the task needed in just a few minutes – if they are not fully here and make the commitment to follow through, I end up making excuses for them, accepting what ever reason they may give for not doing the task. Accepting mechanical apologies and being continually greathearted about continual non-accomplishment on the part of others wears at me. Its hard not to view such acts from a personal basis and begin viewing the whole thing as an affront.

It was delightful last night to see someone take the initiative on their own to make the contact with me because she really wanted to do so. I felt worthwhile and appreciated. These days, and around here this is a big deal.

This helps dealing with the institutionalized, dehumanizing conditions that seem to be built into places like this.

14 July 2013

Sunday late afternoon

Another example of how we are all connected:

but we just don't see it

Today is warm and very humid. ( 85 degrees, humidity is at 55%, feels like 90 degrees), yesterday, not so bad. It was still warm but not as humid. The staff decided that we could tolerate a little outside time out of the front door, under the awning that leads to the entrance. We were out of the sun and even though warm, not too many of us chair users were going to work up a sweat. It was nice to get outdoors for a while. The balmy breezes slipping over exposed skin with the light kiss that makes being inside four walls a distant memory.

Suddenly I was remembering early summer decades ago, sailing on a small inland lake, not far from here. A Sunfish wet sailer, low to the waterline, I was reading the wind on the lake ahead, steering out of the wind shadow toward the ruffles on the water. Feeling the breeze slip around me as the boat moved into the stronger wind. The boat picking up speed. Wondering is the wind really pushing the boat or is the act of the sail creating a slight vacuum on the forward part of the sail so the the wind is creating a suction which is really pulling the boat forward gently with a steady drawing motion. For a while I could imagine the wind flowing over the sail, only to curl back and move the boat as if with allure. I could almost hear the breeze beckon to the boat, “Come to the end of the lake, I have much to show you there.”

As the wind shifted slightly, like one would if they were anticipating something new and exciting coming up next, I could feel the boat begin to move forward, as if....

My reverie was interrupted by squabbling, not from the birds at the feeder, rather some of my cohorts clustered under the awning out of the sun. it seems that one person, bored as she is, habitually fills the gaps between the conversation of others with a play by play of everything going on around us. This running commentary has the same tone as the play by play announcers of some sporting event exhibits; blah, blah, blah, insert excited chatter here, blah, blah, Oh my God!!, even more over the top chatter, much as Chicken Little is known for.... blah, blah, blah

Suddenly from a stoic elder lady, who herself is using a wheelchair who erupts with, “Shut up!”

The one with verbal diarrhea cleverly comes back with, “Oh yeah, come make me.”

Oh boy, of all the words to pick, the mouth flapper reaches way down into the second grade school yard repertoire and fwtches up that one.

Oh well, simultaneously another woman who is in her early nineties, is very hard of hearing and mostly spends her entire day in her wheelchair is carrying on a running monologue with someone from years ago, that we will never know. I say monologue because her silent partner is never interacted with. All we get to see is how angry our compatriot is as she hurls invectives at the unseen foe. Complete with bursts of bravado and promises of getting even. Threats spew forth from the diminutive, frail woman bent on revenge.

Someone else assumes the two who first began the verbal aggression were in some way making statements to and about the ninety year old who is now shouting to the heavens, in her thin voice that she will have retribution. This crowd quieter misses the point by explaining the ninety year old doesn't mean anything by all of this, she's nuts! She isn't talking to them anyway.

At this extra input the two would be wheelchair pugilists suddenly join forces and tell the crowd quieter to butt out, its none of her business anyway. 9With all of this shouting, how could it not be?) Yet another resident tries to explain that the crowd quieter was mistaken and she was only trying to help. Soon everyone is in the melee trying to put their version onto why this has erupted. Asi said, squabbling, plain and simple.

Me? I'm pleasantly staying clear of this, wondering if the uproar might calm down once I get back into the building, hopefully to my room? Oh well, for a while, I enjoyed being out of the room all day. A small while. It just couldn't last. Everyone forgot why we were there. I am not too sure how long the effect will last. Maybe next time I will load the iPod with some easy laid back classical music, stash it in my pocket, put the earbuds in my ears and enjoy the outdoors under cover of polite sonic conditions.

I dunno, could work.

No picture today. I had my camera, but I was told the facility's interpretation of HIPPA laws preeclude such actions.

9 July 2013

Tuesday

There is cooking, coupled with the art of presentation,

and then there is calorie loading

Every time a meal is brought forth it is brought on the same pink plastic tray with the same drab gray heavy duty plastic place settings, so utilitarian, so unbreakable. The flatware is metal (oh boy, at least it too is not plastic)of an entirely ugly, stamped by machine manufacture. I suppose the cups are made of this unbreakable substance to prevent breakage. 

  

Forgive the focus, I had to crop extensively in order to delete offensive - distracting  background

Lord knows I have been tempted many times to hurl one of these cups against the wall just on general principles and frustration regarding the food. But the unbreakable nature of these finely crafted heirloom quality cups just leer at me knowing that any such demonstration would only result in a hollow sounding bounce off the wall. Not very expressive and certainly without the satisfying crash that fine bone china or even some ceramic pottery would afford.

I am reminded of those halcyon days when as boys we came across bottles in an old open dump (My, that was a long time ago. Things are much different now). We would take turns throwing objects to break the bottles we found there. Even when going to the municipal recycling center, everyone else genteelly placed their glass in the open doors of the receptacle. That would be so sad. I would wait so no one would be struck by errant flying glass bits. Then draw back my arm and wing one in the opening. Crash! 

Followed by the sound of other glass that was not broken finding a new state of existence. The sound of that breakage carried with it a sense of sudden release. All tensions immediately drain away. No, draining is too slow to convey the sudden absence of that held tension. It is as if whatever was confining that tautly, tightly wound energy was completely removed in an instant. In a flash that energy that had been so constrained made an explosive sigh upon finding itself released. That sound of release carried with it an invitation to let other tightly held energy go.

When I used to do psychotherapy, I kept a large rubber ball in my office. This was 65cm diameter ball, very resilient, and is often used for physiotherapy. I kept it to occasionally roll on between clients to stretch my back from hours of sitting while in session with clients. I also kept a toy plastic ball bat to hit the ball. This was also a tool to help clients release some of the tightly wound tensions that many clients would carry in their bodies. Some people had been holding this tension for so long, they had become quite used to it. They couldn't feel it, they had no idea they had become so blocked up inside.

I would offer them an opportunity whack the ball. That it might help them relieve some tension. I got the ball out from behind the chair, put it in the chair, so it would stay fairly self contained, ready to whack again. Sometimes people were shy and would barely tap the ball, sometimes I would demonstrate how hard one could really hit that ball. The sound of the impact resounding inside that ball was reinforcing that something was really happening, the recoil of the bat from the ball was reassuring that something was indeed happening. Most often, in fact always, after a few tentative hits the next ones were quite explosive. There were a few clients who really got into the process, their frequency of striking the ball would increase, the amount of energy expended rose, a few got so into it that for a moment they temporarily lost track of where they were. They stopped red faced and somewhat chagrinned. When we spoke about it later, during de-breifing they were so surprised that they found that they indeed were not aware of how much pent up rage, tension, upset or other bottled up emotions they had been holding.

I need something like that. Due to the MS there are many physical things that I can no longer do that were good at relieving stress and tension. To throw something(unbreakable, of course). Like pillows, water balloons outside, to even play balloon volleyball with badminton rackets … There are many ways I know to release some frustrations that I know of that can be done even by those who use wheelchairs.

I mention these to the staff here and I am met with incredulousness on their part. Obviously, I am met with, “Well we can't do that here. Its too violent.”

“Right, and letting it fester in people is any better?” After all we know that holding this stuff in raises cholesterol, which has the nasty habit of breaking down organs and tissues over time.

“If you are feeling depressed, we can get you a pill.”

“No, no pharmaceuticals. That is just a chemical straight jacket.”

“What do you mean? Do you want to see a social worker?”

“I know several Social Workers, no denigration intended, but I could teach most social workers, things their programs never considered.”

“Okay, let me know if you ever want to break things,Mr. Whiting ...”

Why is it that I often feel like Gulliver lost in the land of Lilliput? Is it possible to know too much? How do you speak intelligently with those who already believe they know enough already? Or speak with those who believe they heard you before you even speak the words? Is it any wonder that I see so many people who are not exhibiting stroke symptoms but are in facilities like this one for short term rehab before they go home who develop signs of depression? Its kind of like an educated lunacy.

You can't codify human behavior, that always leaves something out. Human behavior must be felt then understood from that premise. Someday those in power of this insanity are going to realize the treating/caring for people is going to mean more than a physical form but also an emotional, psychosocial approach integrated into the daily interaction as well.

I daydream of some of the tea that I made at home. Steam curling up from the surface of the liquid as the tea gently steeped into perfection. Watching the liquid turning darker and darker as the near boiling water caused the flavenoids to leave the tea leaves to lend their unique addition to the body of the tea. Waiting for the appropriate time to steep for the fullness of flavor to develop. Smelling the aroma of the pine smoke issue from the tea along with the aforementioned steam rising from the surface of the gradually developing tea. Smelling that smokey odor knowing that soon the pan fired black tea that can only be Lapsang Souchong, smooth, strong, a favorite of Winston Churchill and Whaling Captains of New England. I love that tea. 

It does no good to get the dries tea itself, the difficulty is being able to secure hot enough water in order to make the tea.

But here in a land where some one else seems to have the need to take care of me, they believe that whatever their understanding is of the world must be mine as well. I am appalled at the things that are done, while here, are thought to be for my best interest, with no input from me whatsoever.

Tea here is made with lukewarm water, barely warmer than body temperature. Well, that isn't going to make tea, it only produces colored water. Remember those flavenoids? They're still stuck in the tea leaves – the water was never hot enough to release those flavenoids and actually cause tea to form. Why is this so? Why, State law, I am told, we don't want you to get burned. Okay here is some really fine tea, take it to the kitchen and have them brew it. Bring it out when it cools enough so even the State won't get burned.

“Oh we can't do that, takes too much time.”

“You mean those kitchen monkeys are so busy preparing the pseudo food we are served to make a decent cup of tea? Are these people incompetent?” Don't answer that, I think I already know the answer. For proof see some of the previous posts showing food serving photos.So here I am, frustrated as I ever have been, with no end in sight. No way to spill the pent up frustrations, no one willing to even explore various methods of known stress relief, judgement flying everywhere about some of the ideas I bring up to alleviate the routine boredom of being confined here. And yet I need the physical help to do some of the Activities of Daily Living. Life in a Nursing home seems to be the only option, and that comes with a big requirement. That I become more communal. That my way of being is not honored or even understood, and that I stoop to living at the lowest common denominator.

Oh, and for this privilege, I get to turn over my entire retirement stipend that I worked for seventeen years before I went for more schooling. Sounds like a deal to me, right?

8 July 2013

Monday

Not all of the craziness is due to adherence to rules:

Following Alice, but watch out! The Red Queen may be just around the corner

As much as I may rail against some of the rules of operation around here, some of the residents are worth watching for adding their own form of insanity. There was a gentleman here (he's not any more – moved to another placement.) who has shown many disruptive and/or highly offputting behaviors. He uses a wheelchair for most of his mobility, although he can get out of the chair and stand or take a few steps without support. I would first see him down stairs in the lobby, travelling as if he was on a mission. He often had a disheveled look to him that lent an air of some urgency to his appearance. He would have an oxygen tank affixed to the back of his chair with the usual fixture of an oxygen airline leading to thefront of his body. The airline had a cannula built in that most often was never sited properly on his face. Many times the whole contraption was just looped around his neck or even properly over his ears but with the outlets missing his nostrils completely. Sometimes he would have it in the right position but with the outlet for the left nostril shifted over and entering the right nostril and the right output airing his cheek. This made him appear particularly zany.

As he became familiar with my presence around the building, he began to try to interact minimally with me. Like asking if I had a cigarette? He really wanted to have a cigarette. On another occasion he asked if he could borrow ten dollars – he really wanted a cigarette. Eventually he would learn my name, then he would state my name before asking for a cigarette. I produced no cigarettes for him. There are none allowed in this building.

He also could often be found in the day room carrying on with one of the female residents. At first the carrying on appeared to be very similar to early high school behavior. They were often huddled at one table in the corner, holding hands, talking among themselves. He seemed to be the initiator, she seemed to enjoy the attention, but appeared to be somewhat reluctantly going along.

After watching this a while it was easy to notice he called her by one name that had the same initial consonant as her own name. He never seemed to get it right, no mater how many times she or the CENA's would correct him.

He began entering my room uninvited and unannounced. The method of operation around her is to first knock if the door you want to enter is closed. Not our boy. Several times he came round while my door was closed, and just barge in. The door would suddenly fly open and Mr.Inapproprate would partially enter and look very surprized. He would ask if I had a refrigerator, then leave. Twice he came insearch of the illusionary refrigerator. Once he asked for somone whose name I could not figure out. When he spoke it sounded as if he had stones in his mouth, so trying to understand what he was trying to say was often difficult.

The last time I saw him he paid me a ten PM visit. The door exploded open, this time he rolled right in and didn't stop coming on. I strongly said that he didn't belong here. By now he was getting quite a reputation for Exploring in many people's rooms, often when they weren't there. The staff had been alerted to keep a watch out for him due to this “exploring” tendency he exhibited. As he grew closer to my bed, he said that he had to use my bathroom. There is a bathroom off my room, but he wasn;t headed for that. He was making for the commode that I have to use. It is like an adult potty stool. It sits right out in the open in my room and has to be emptied and cleaned after each use. Clyde Crashcup is intent on using my facility, which is less than four feet from my head. He stands up in front of my elimination device and whips 'er out and proceeds to urinate into the bucket just feet from my face. I reach for and press the call light, but the CENA arrives as he is making his way down the hall after struggling to exit my room.

At least he closed the door.

I think what I have been seeing is the results of some kind of brain damage, possibly hippocampus. That's the way the clues point.

Its a special community here, in Bedlam... and to think, I can't just leave whenever I want. The only way I can get the solitude that serves my introvert needs is to close my eyes and“hideout”under my headphones, while trying not to worry as to the next crazy intruder.

Have fun, its a laugh riot here.

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.

Duh!

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?

Anyone?

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

Tuesday

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

Saturday

mid-afternoon

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.