Sunday, September 28, 2014

Its all in the Intent

28 September 2014
Sunday morning

It has been painfully obvious to me ever since I got here, that absolutely everybody treats my academic background as if it were non-existent. The only place I am referred to as “Doctor” is this magazine label, and my mother bought the subscription for me. Many of the staff call me “Sir”, which I have always considered a throw back to the British roots of our English language and the built-in class distinctions which have permeated English society for so long as to be nearly invisible. Sir always sounds so pretentious and setting apart of the speaker from the respondent. There is the implication of mockery when used in American culture, when the right one of voice is used counterfeit and derision seems to hang about like a bad odor. I'm always leery when I hear someone reference me with the appellation Sir, as if I am being set up for something. On the other hand, the appellate “Doctor” acknowledges the fact that many years of concerted effort have been spent In the successful achieving of an academic pursuit. The use of Doctor carries a sense of congratulations and welcoming recognition. Guess which term is way overused around here?

Saturday, September 27, 2014


27 September 2014
Saturday evening

Now that dinner is done, the Saturday afternoon football games have played across my neighbor's television, and there is some reflective time to spend. Amid the sounds of game shows leaking through my door, I think about the children I never had. How they would be adults now, living somewhere on their own. Probably far from here, so they wouldn't be visiting anyway. I've been in training for just such an occasion, lounging in a care facility for a very long time and no one comes to visit. I could pine away, saying that I miss them. But I have missed them for a great many years by now. They are never going to come. My missing them is bittersweet, both from a now sense and a long ago sense combined. There never was anyone to call me Dad. No birthday cakes with lots of frosting. No watching with great pride tinged with fear and hope, as they learned to ride that first time bicycle. No soothing of tears and skinned knees from the terrors of childhood learning experiences. No sharing the joys and wonders of being in nature on its own terms. The elements of slowly gaining adult skills, as marked by mastery and possession of that first jack knife or hatchet, checkbook, then car.

I wonder if those non-existent children would have gone to college? It certainly is different now than when I went. Would they have grown to be self directed by their heart and inner compass or like so many others seduced by money and ego satisfactions. Would they break my heart, more than it is now by their not being here? Possibilities lie behind us as well before us, in fact all around. It only matters which direction we are headed toward as to whether they are fore or aft.

Looking Back

27 September 2014
Saturday morning

In the idling hours after breakfast, sliding inexorably toward lunch, when there is not much to do in this preplanned, regimented life, designed by and for others, I found myself going through various news items on the Internet. In that way that only hyperlinking on an infinitely large database as the web can provide, I came across this article on ageing from the BBC:

As I read the article a notion echoed in the recesses of my mind, how some people struggle so heroically against aging. With its concordant issues of aches and pains, bodily and organ dysfunctions, mental processes decaying to the point that the actions one has come to command and control as activities they have used to navigate living in this body for the sake of experiencing things in the physical world. I, myself, have enjoyed many of those same things, but the choice of experiences I wanted to sample were often quite different from what many of those surrounding me bought into.


High school was not the apogee of my academic life, in fact it was mostly a survival occurrence designed to challenge others but often seemed to greatly and successfully underwhelm me. I enjoyed competitive swimming through a lot of my life. Yet I often felt like a voyeur as I was never buying into the competition aspect, I never got enjoyment in comparing my feats to others, I had difficulty understanding the apparent ego based way my peers did this. I could see no value to this type of cross unit equivalence. I was often destructive to the self and others. People often assigned value of a dubious sort that was often destructive to this kind of ranking. The joys of being in water were more experiential and not well understood by others. The way I could be weightless in water, the comparative tremendous viscosity advantage that water had over air, the feeling of water buoying and offering a resistance against which I could propel myself. Somehow these features were never seen by those for whom one's most recent exposure to water is measured by a stopwatch.

I lived for the joy of skiing. I began as a small child. Taken to ski by my parents at an early age, I was smitten at an early age an could never again look away. The act of sliding effortlessly across snow was so unique and previously unknown. Snow, that necessary ingredient for skiing, begin to claim to be an important element in my young mind. Beyond snowballs and snow shoveling as hallmarks of a winter life to be looked at with reactive awareness or dread, when not playing with skis in the back yard, a snow filled day had a certain smell attributed to it. The faint odor of wet gloves and clothing having been snow covered and subsequently moistened, maybe almost wet, had an odor unlike anything else. The memories associated with this aroma were often my favorites. Similarly a snow covered dog that soon becomes damp from snowmelt brings forth similar delightful mental images.

Looking at these memories, I can see what has always intrigued me, I can more fully understand what often drew me onward toward the major elements which I chose to undertake throughout my life. My academic and work related activities all were predicated on learning how and then enjoying the bright faced experience of discovery by others. The glow of self recognition that illuminates another's face as the awareness becomes clear to them. Then the growing glow of understanding that this knowledge is their's and their;s alone, that they will be able to summons this at any future time without any support from others is an image that is unique in the world.

As these thoughts and ideas played through my mind while reading of the quest by others to prolong life, it occurred to me that the object of life was not the length of living, but to what degree one was satisfied with the experience no matter the length. It may seem selfish to read of my inner experiences, but I have also noticed that when I am experiencing this joy in others, they are getting something from me as well. A sort of energetic boost, an unseen, but well felt encouragement that they are indeed doing something of value. That glow from others showed that in spite of arguments to the contrary, this was the correct path to have taken.

Friday, September 26, 2014

The Food Follies Continue

26 September 2014

Today's observation centers on the food served at the facility. In an effort to get me to be more participatory with the program here, the new dietician has offered that a weekly set of menus be copied and sent to my room. I, in turn, am to circle the items that would like to have, then send the menu back to the kitchen. There was a tone to this message that this protocol would take care of my concerns. This plan only sidles up to proximity of the issue. Using more closely focused attention will note that the protocol as stated assumes that I would submit to the choices offered, when in fact there are only two entrees given for each meal, the main entree and an alternate. Some days the main entree might be macaroni and cheese (macaroni noodles are full of gluten), the alternate might be something equally unappealing like a fish sandwich. (the bread bun that holds the fish is also full of gluten)For me this is a no choice, choice.

To deal with this disparity I also add the right to cross out specific menu choices in addition to the circling of the choices preferred. This sort of has been working . Tuesday lunch was served with the accompanying meal ticket, an item found on every meal served. Even though I had circled the inclusion of minestrone soup, there was no soup on the tray. The kitchen had written on the ticket, apparently as a check list. Notice the mention of soup on the ticket. Not wanting to continue rolling over every time the food is messed up, I added my comment about the missing soup. (note how my handwriting has really deteriorated due to the MS)

When a company named Sodexo took over the kitchen production last summer, it was announced to the residents in a facility wide meeting that fresh fruit was always going to be the fruit type offered. Once in a while there is fresh fruit provided. Usually it is limited to one or two chunks of cantaloupe or honeydew melons, a fresh red grape or two, a chunk of orange that has been sliced from the rind by knife so it looks unlike any previously eaten before. There are peaches, pears and applesauce routinely provided. The peaches and pears are always serves diced in syrup, which is anything but standard fresh fruit production in my book.

I find it interesting that on the menus fruit is always listed as the fruit in a sliced form. This is how the fresh fruit, sliced peaches appears on Thursday's dinner. Someday I hope to see the amazing trees that produce this uniquely grown fruit.

To show that the food follies continue to be played, I would like to mention one more anomaly. Thursday's soup choice was Cream of Broccoli. It was easy to see that the soup was homemade by noticing the broccoli that inhabited my soup was not the usual tiny bit sized chunks of broccoli florets found in commercial brands. The single piece of broccoli that was in my soup bowl was huge, it barely fit in the bowl. Using a fork, I managed to spear the dinner sized piece of broccoli, dripping thick white soup stock, from the soup bowl. I guided the vegetable toward my open mouth. I had to eat the broccoli two bites at a time in succession from the fork. This gastronomic feat was accomplished with the ancillary fact that great gobs of thickened soup stock found its way onto my face and imbedded in the facial hair that decorates my countenance. I normally try to not make such a mess when eating, but on this occasion, such pleasantries were not possible.

Sorry, no pictures.  

Thursday, September 25, 2014

Looking for Kuan Lin

25 September 2014
Thursday morning

There are times when I find myself thinking back about the things and events of my life just before I had to leave my home on this strange journey in physical health. I had already paid off my home, I paid down a thirty year mortgage in eight years. The was going to be no more feeding some bank its life blood based on my labors.

I had made numerous improvements to the property over the years, building a sub base for the drive and hauling in yards of bank run gravel, then eventually crushed limestone for the driveway. I made numerous soil improvements to the garden bed, hauling trailer loads of autumn leaves, collected from in town on my way home from work. Also improved the soil where the fruit trees were planted. I hand dug out the roots of invasive Box Elder trees that had been allowed to grow unbated on parts of the property before I got it. I hand dug along the basement foundation on the north side of the building so I could line the outer wall with building foam four inches thick so the house would not lose so much heat through the basement. Then backfilled the entire project by hand. A wood burning stove was installed, then updated to a more efficient model to make the winter heating more enjoyable as when as much cheaper.

There were the usual building maintenance duties that home ownership brings with it, every time I raised the quality higher than it was before. The shallow well was re-drilled to a deeper, more substantial well a hundred seventy feet deep, with a submersible pump installed rather than the older injection pump in the basement. The older oil burning furnace was replaced with a newer, state of the art gas furnace that was much more efficient. An electronic air filter system was installed. A new roof was placed over the aging shingles. The original carpeting was removed and a much higher quality carpet was installed as well as new vinyl florring throughout the house. The air leaks had been sealed from inside the house. A new much bigger entry step was built outside the major entry.

I had over time increased the number and quality of the major tools that I used. A Stihl 32” chainsaw to cut the firewood, an hydraulic log splitter to split the cords and cords of wood that was burned over the years. A lawn tractor to replace the old rotary push mower (it used to take two days to mow that lawn with the walk behind mower), then a zero turn to replace the worn out lawn tractor. Several hand tools like a Bosch rechargeable drill, a saws all, numerous hand tools. A complete stained glass studio in the basement which had seven kilns of various sizes, lots of glass and glass storage, many specialized hand tools, slumping molds and the beginnings of the work to calibrate the kilns to each other. The were heavy work tables made as well as glass storage shelving.

I had recently gone through the entire house and replaced all of the incandescent lighting with special CFL lamps that emitted the same color temperature light as incandescents. I was beginning to research photovoltaic systems to install as further lessening of the footprint of the house on the environment. The inclusion of the dogs over the years made the house a home.

It had shone with potential from the first we saw it, a forlorn little ranch style starter house, stuck onto a two acre plot . The realtor’s photo did not do it much justice, taken mostly to document a listing the image did little on its own as a selling tool. It did not take long for the place to begin to respond to the care and input for it to become a fortress. The plants around it grew into a sheltering cove of greenery to keep eyes from the road away, and the north winds from blowing through unabated, stealing heat from the eves and corners, the very lifeforms joined in with the energy savings. The daily trip up the driveway became both a reception and a welcome back again. The home seemed to welcome me home every time. It sheltered me and welcomed me time and again. That home encouraged my explorations both academically through three graduate degrees and several extra curricular studies programs. As I built it up that home supported me.

After the wife left, choosing to no longer be a spouse, the atmosphere deepened in support. No longer was there an air of contest in the home depending on egos and comparisons , it settled into the undivided support that it had always shone. All of those efforts and all of the expense placed in that home was really paying off. Even other people could sense the specialness of that place.

It was so sad watching that house recede through the back windows of the ambulance as I was carried down the drive on the way to the hospital and completely different form of living. I always believed that everything that I put into that house would come back at some future time, put off as long as possible into that future time, when I would have to sell it. A $40,000 house had appreciated to $115,000 when the wife decide that she needed half as a bonus parting gift to accompany her new solo venture. I carefully explained that I had made most of the payments, especially when I had messed around with a spreadsheet with one of my first computers. I was horrified to see, graphically what the full length of the mortgage payout would be if the full thirty years was used to pay off that loan. $142,000 for a $40,000 purchase did not seem such a good deal to me.

The wife never wanted to recognize that she was still a college dropout making small wages for so many years, while I paid the mortgage. Even after she went back and finished school, she never got a job that paid commensurate wages,nothing interested her. She continued making small money while I just kept on paying the mortage down. I had trouble getting her to pay even the phone or electric utility bills in an effort to get her to be even a junior partner. She often complained that all I ever saw was money, in spite of the fact that too signed the mortgage agreement. As far as she was concerned the mortgage was my problem, until time came to cash out, gather the winnings and move on. Then suddenly half of the house was hers, and she wanted it.

At this point the fortress of solitude became a bone of contention. She pointed out that according to the State, and her attorney, she was entitled to half of the communal property. At this point I was glad that she never wanted to have any children. She would probaly find some way for me to be responsible for them too, after thirty years of marriage. Her attorney had a fearsome reputation of making ex spouses pay dearly. If we would have had children early in the marriage and they were adults at the time of the divorce, she would have found a way to make me pay for their care and upkeep in their adult years. I went to find a loan against the house to buy her out and finish the legal matters as soon as possible. Even the bank was not fast enough to suit her, she wanted her share of the money faster than the banking bureaucracy was creeping along. She contacted me several times to try to encourage me to “hurry up” the process.

I tried to stay as neutral as possible through the whole process, showing no anger or unhappiness at being treated this way. I even helped her move some of the household items out to the moving van she had contracted to gather “her” things from the house. I remember standing on the door stoop waving as she drove away. She never looked back. The sense of relief was highly palpable, like the storm clouds parting after a lengthy all day weather event. I remember when we first moved in the house, there were times it felt like being under a heavy dark cloud. These times arrived when Saturdays rolled around and the schedule called for house cleaning. She could only motivate by becoming angry. At things that didn't matter. Anger is what she used to get going. She never even saw that she was angry, when I pointed it out to her she denied it. Apparently anger was not an acceptable way to be, but she was always angry, at the dust, the need for cleaning, me for not being angry along with her, the dog being a living being in the house, it didn't matter. When she wasn't angry she was stretched out on the sofa napping, any time of day. Her parents had her medically evaluated before we were married. No signs of anemia, disease or any reason for her to be tired all the time. Eventually it seemed that the act of dissociating with everything was the best way to not have to become involved with anything. She napped chronically, at home, when she went visit her folks, even when she flew to see them in Florida. She was just sooo tired it was too much, she needed to have a rest.

After she left, the atmosphere about the house lightened up considerably. I could work on my computers without hearing opinions about it. I could play my practice chanter for the bagpipes without comment about the tone, I could take the dogs for a long walk without having to undergo an inquisition upon my return. When I did ask her to go along with us, all she could talk about was little incidents that people did at the doctor's office where she worked. And all of those comments were judgmental valuations about the people involved , offered in a haughty manner.

The atmosphere around the house lightened quite a bit after she left. There was no time to feel sorry about the loss. I had a new school program to attend to. One that would allow me to gain the most freedom in my work career that I had ever experienced. The freedom to work for myself, without nursing along those whom lent their supervision to my professional duties yet showed lots of their own failings to be as grown up and be adult like in their own affairs. Many little things around the house were put on hold, but so much had been done that the house could tolerate it.

After years of driving daily more than one hundred miles one way on a round trip to Detroit and the environs of the northern suburbs, two vehicles and the onset of this disease mandated converting a vehicle to hand controls, I finished the program. I was inclined to not go through the graduation ceremony as I already had the certificate. One of my friends persuaded me to attend. That was one of the last times I ever drove my car.

Once I was diagnosed with MS things deteriorated rapidly. There were times when decisions were confusing, giving an answer was not coming as quick as people wanted. I was amazed at how people began to covet some of the material things that I owned. A neighbor, himself an individual who had his own issues with too much alcohol consumption, decided that I had told him it was okay to take my hydraulic wood splitter to keep, and a new rotary lawnmower as well, I certainly wouldn't be using them.

Then the State accepted me into Medicaid with no issues based on the MS diagnosis, only after I had been hauled off to the hospital did they reveal the rest of their rules for acceptance: no ownership of anything valued at more than $2000, no income, no savings, stock ownership, no retirement monies, nothing. After all the program is made for those indigent poor people, you know the shiftless layabouts who never contribute anything. Yes the State has just the plan for you. Never been a shiftless layabout? No problem. The State has a plan for you too, same plan as the first one, full of the same shame inducing elements that imply that there must be something wrong with you 'cause you don't have any health insurance. Any special qualities that you may have acquired or earned are all dismissed because you are accepting this state program and that is how we do it around here. We will treat you to the best that anyone who has never owned their own home is allowed. What you once owned your own home? We don't see any home. Stop acting as if you are impersonating a fine upstanding citizen, its not allowed, you shameless layabout.

So my little home that I had put so much into, built up over the years, paid off early to not make someone else wealthy off my labors, the place that always took such good care of me, and had more than doubled in value. Was sold in short order as the State program couldn't wait for this market to reach the house. The Medicaid people were very insistent that the house be sold in just a few months, they just wanted me to no longer own anything, not caring for much else.

My brother had been named power of attorney, for which he felt empowered him with way more abilities that is usually legally given for that office. He dutifully sold that property for about $50,000 dollars which satisfied the loan I had against the house, the loan to buy off the former spouse. He thinks that he did a good job, in fact he won't listen to me about anything regarding the sale of the house or disbursing my goods. Once he grew angry hearing me, he said that I'd better be quiet and not bother him or he would take me to court and have me declared incompetent. I told him that I used to work for the court that conducted those hearings, they don't work that way. He disagreed violently, after all, his son was in law school so he knew the law, don't you know.

So here I am in a nursing home that can only worry about their own hide, and if they can squeeze just a bit more from the operation of this place for the venture capitalists who own the business. I have a solo room in a facility that moves residents constantly from one room to another as easily as chess pieces and with no more feeling than is offered for highway roadkill at the side of the road. There is little to personalize any of this experience, even though most residents try to establish some sense of connection to their room. I know of several women who have been moved at theast three times each.There are hundreds of unseen rules to preclude making the space liveable, right down to no possible ways of extending the four outlets available to plug in any of your electrical devices. No power strips, even the UL approved ones, no plug extenders, no multiple electrical plug head devices, nothing – Fire Marshall says so. And by the way the hospital bed uses one of those outlets in the room. If you need an oxygen concentrator, that is another plug unavailable to you. The food quantity and quality are other matters. The attitude of many house rules make one wonder why is it that I am living here, again? Another way of stating it is: This is living?

The one month of Physical Therapy over a year ago has never been explained to me at all. All I know is that my registered output on the fancy machine was 37% at the beginning of the month and it was 37% at the end of the month. What I was told was this showed no improvement, so no more Physical Therapy for me. I was never told if this was a house rule or if a Medicaid dictate. My thought was, he guys, attention! MS here, one never improves, but physical therapy helps keep joints free and flexible, not to mention some minimal muscle movement to help venous blood flow so feet and lower limbs don't swell. The facility response was that they could have me dressed in TED compression hose every day to deal with any swelling issues.

Meanwhile I am to be a shiftless lump laying about in bed everyday, except when someone from the facility decides to pester me that I need to get out of bed more often and do something. What that thing can be? Playing Uno or Bingo, I just don't participate with the program, that's all.

Golly, I used to have a life, but to speak with the authorities here, they don't have the space or the time, my pursuits are just too special, don'tcha know. So any entertaining of myself is my job alone, just don't request anything from us.

Is it any wonder why I can spend so much time in revery? The powers that be fail to see very far beyond all the limitations that govern their existence. Me, I am bound by far more than the physical limitations of this disease, most of them belong to those who offer the care for me. It is such a shame that humans can be so self limiting that their shortcomings effect so many others.

I dream of other times and other spaces to escape the horrors of this place. I practice acceptance and continue stating what I would like and need. All the while wondering where has compassion gone? Why does it seem so unavailable to so many whom could weild it so well? Do they not see? What are they afraid of? The mess they are making has not come home to greet them … , yet.

Wednesday, September 24, 2014

Beginning with waffles, long ago

24 September 2014
Wednesday morning

This morning began like so many others. Sleep evaded me any further about five thirty in the morning. After lying with eyes closed for nearly half an hour, I noticed that I was rocking and rolling on the inside. Okay, enough closed eye time, the time for wakey wakey has arrived.

I switched the iPod over to NPR news, found the bed controller and adjusted the head end of this hospital bed into a more raised position. Groping with my left hand for the on/off switch of my CPAP machine, I cut the power to my nightly assistive breathing device. Relaxing in my now elevated position, I listened to the morning news.

I began to think about the upcoming breakfast meal, remembering having read the menu, that this morning's meal was to consist of a baked Denver Omelette (onions, chopped green pepper and ham) was the main entrée. I was looking forward to something a little more substantial than the standard scrambled eggs, which are a misnomer, in that they are not complete eggs but only egg whites mixed with yellow dye to fool the recipient into believing that the missing yolk is still there. No amount of foolery can hide the fact that these particular scrambled eggs are always off taste and substance. I had several hours of preparation to get my mouth ready for a Denver Omelette.

When the meal came, disappointment once again rode on its appearance with the meal. The main entrée consisted of the pseudo-scrambled eggs containing bits of ham covered with one slice of melted American cheese. Not quite what the menu had promised. But I was not surprised, for this is the standard way that communications are skewed here in this facility.

There was the usual small bowl of rice crispies accompanied by the 1 cup serving portion of whole milk in its nifty little sealed, waxed cardboard, container. I remembered speaking with the new dietitian just a few weeks ago, wherein she was quizzing me as to why I did not eat certain foods that were sent up to me. This question was tinged with a slight bit of emotion and tone of voice that gave the impression that she, and possibly the entire administration was considering the fact that I did not eat everything they sent me as some sort of insult that I did not like what they were serving.

I rather swiftly disabused her of this idea stating that I find eating too much milk product always lends towards overproduction of mucus, as milk tends to do. And I have been weaned for several years now. In spite of the USDA food guidelines, I don't need that much milk anymore. Although I do like rice crispies now and then, I do not eat them every single day. Perhaps if there was some other liquid to float the crispy kernels other than milk I might consider it. The brand-new nutritionist did not receive this information kindly. Apparently those who determined that certain food choices are just not for them are suspect of being surreptitious, subversive and not to be trusted, just because they're not like everybody else.

Newsflash sister! Look at me! Red Hair, fine Celtic skin that sunburns even through a shirt,a lifelong case of Celiac disease, and now MS, and you are unhappy that I don't conduct myself like everyone else? Really!

What brought this inquisition on was unknown. There was a strange tone regarding this whole discussion when she and another of the first floor administrators had been seeking me out one morning. They found me in my wheelchair headed for the elevator, making an effort to go downstairs to go outside. The two of them insisted on speaking to me privately, an impromptu meeting was proposed, we could go to my room which was now empty. Once it all gained positions in the room the two of them stood to inquire of me the questions that were on their minds.

Right from the beginning this did not have a good feel to it. I felt more like errant third-grader who had been banished from class until he had visited with the school principal. The inquisitional tone of the entire situation gave the impression that I was under some sort of attack through fact-finding. Just the mere act of me seated in a wheelchair and them standing, looming over me gave the very strong impression that I was in a position of subordination. It seemed that nothing I could say could get all of us on the same level. It was almost as if their method was to impress me with their power, and to make sure I recognized I had none.

The nutritionist asked why I did not eat the gluten-free waffles that the kitchen had gone to lengths to prepare for me? (I found this to be interesting because the kitchen had stopped sending up those waffles months before this woman was hired as the new nutritionist - obviously records have been kept regarding my previous eating patterns) I indicated that there was nothing wrong with the waffles, but every single time they were accompanied with a single serving package of Smuckers imitation maple syrup, which tasted heavily of corn syrup with just a dash of maple flavoring. In my mind that taste in mouth feel is very negative, more similar to the liquid medicine I am to take daily. Since they are going to keep sending up the awful synthetic syrup, the best thing I could do was to not eat the waffles. Rather than inquire what the problem was way back then, the kitchen just stopped serving them. Apparently, according to this woman's question, there has been an unspoken canker regarding this refusal, growing just under the surface of awareness for a very long time. I viewed this bringing to light their concerns to be a good thing, a chance for healing, an opportunity to once again work with one another. By the tone of her voice and the following responses, she showed that the kitchen staff had been considering my refusal of their production to be an insult. It seemed as if they wanted to be unhappy with me and now is the first time it was being brought to my attention.

When I indicated that for most my life I have really not enjoyed imitation maple syrup. That, I have often gone out of my way to find real maple syrup made from tree juice, that which is been boiled down lovingly hours on end by dedicated individuals. I preferred grade B because it's a little darker and more flavorful than the traditional best selling grade A .

The nutritionist's considered response was: "We don't have the time or the energy to go chasing all over for your little esoteric tastes". Whoa! It seems as if I've been served notice. The veritable slap in the face by a left-handed glove, the age old challenge. Not to a duel this time, but see who is going to win this little skirmish, the nutritionist and the kitchen staff versus whether I will eat their production or not.

Esoteric tastes indeed. Is it my fault that most of the rest of the people will dumbly, and without complaint suffer to eat whatever is placed in front of them? Is it my fault if I recognize better tasting items as opposed to others who let such distinctions slip right past? I am amazed that no one considers the folks who are not so inclined. Is that sufficient reason to continue producing low quality food?

Later this morning one of my more favorite nurses came in bearing my morning meds. She brightly asked how I was this morning? She sensed the laconic tone in my voice and asked what was wrong? I told her of the breakfast entree, how it was not as advertised. How defeating it is to be constantly treated this way by the kitchen and the new nutritionist. I had hoped that a new employee might have a different attitude toward the job and her response to the residents. I commented that it didn't take very long for the same attitude that pervades this organization, to corrupt her as well.

At this point she told me that she had offered her resignation. This coming Monday was to be her last day. She said that she is sick and tired of this entire organization being so warped about providing care on the least amount of cost basis. She indicated that she thought the problem came from the venture capitalist firm that bought this care provider out several years ago. I have heard of this from many other workers here. Lots of good workers have left to do the same work in other facilities.

I have seen and heard of this same issue from many others. The cutting of costs has become so severe that many caring CENAs have reluctantly left the employment here for other places of employment. They say that it pains them to not have the time to fully interact with the residents as they would like, rather just the barest minimum of care is given. Because of cost saving measures make staffing enough CENAs is deemed to be too expensive. Less workers on the floor means limited time with each resident in order to get to the next one.

There is a sickening feeling to realize that for the next years of my life, this is going to be the constant underlying reason determining the sort of care I get. So far my input has been often not heard, certainly not acted upon, probably diminished as to relative value given to the comments I make. I can't speak to how thrilled I am to experience the next round of words and actions at contradiction to one another.

Tuesday, September 23, 2014

23 September 2014

Here we are two days into fall, my favorite season. The quality of the air shifts from languid, humid and often hot to a crisp, cool, more dense consistency that speaks of greater activity in the days to come. It no longer feels like breathing thick, moisture laden air through a straw on some days. The heat that dares one to move very much and weighs everything down until evening arrives. Autumn not only allows more activity, but entices it with trees that are turning different colors, fading from the industrial green of summer production to the yellows, reds and oranges that mark the passing season. The wind stirs the leaves that are hanging on to branches with a more tenuous grasp, waving goodbye in the breeze. The ground becoming more and more cluttered with the cast off leaves as the layer of ground clutter grows offering cover for the little creatures that populate the ground.

The major upright branch of one of the maples outside has already begun to turn reddish, its green leaves showing red between the veins of the leaf. Soon the rest of the tree and the other trees will join in the rush to shed first the color of summer, then the leaves themselves. I recall wonderful days driving the car along certain roads across bucolic scenes where trees changing color surrounded a farmyard, the trees in the woodlot beckoning to come explore, bring your dogs, see this woods. A lone maple in the front yard, some of its leaves a riot of color, some already on the ground, like a careful tree skirt spread out below the mass above, foretelling of a leaf journey soon to come.

The dogs have all died by now, buried in the back yard of the home that I no longer own. I am an eternal indoor resident in a facility that is determined to show that it does not understand, the need to get outside. To reconnect with the natural world of breezes, leaves trees and color. Most of the dogs that are brought here are nervous teeny canines, more suited to loudly announcing some faint of breeze or some other imaginary trangression than exhibiting calm doglike Retriever behavior. But somebody likes them, as accessories that lend style to their owners.

There are two maples, one red, the other yellow, which I can see from the windows whenever I can get the help to get out of bed and into the wheelchair. It has been years since I have scuffed and shuffled through leaves with my feet on a long walk. Somehow sitting on concrete in a wheelchair, my feet held several inches over the ground just doesn't come close. The ability to be in nature, connect with the earth has become the same as most modern humans – disconnected, separate, held apart. A view of the trees, at a distance. There is a sickness to this condition, a thin contact with the energy of nature, of being a part of the whole natural world. As if I am but an image of that which I used to be, supplanted by the ideas of those who believe they are keeping me safe and healthy by saving me from dirt (soil,) germs and becoming sick. I am already sick, of being so thoroughly reduced through a care routine that diminishes all that had once been important to me at a long ago time.

The calendar tells me of the season, the passing of the equinox. The astronomical signal for the season to begin. But those human held signs don't compete with the maple that resides beyond the window. Beckoning yet again. 

Monday, September 22, 2014

22 September 2014
Monday morning

I sept very well last night, getting my sleep schedule back toward normal. Keeping one's sleep routine approximating normal is difficult these days. Not only am I fairly well kept from experiencing the regular diurnal fluctuations of the day/night cycle, being inside most of the day, the window in my room is behind my left shoulder, so I just about never see outside daylight anymore. This disease results in extreme exhaustion being experienced after the most mild exertion. Often naps become highly important, their need making themselves known in sudden onset occasions that become impossible to ignore. If these small naps extend abit longer than needed (entirely easy to do), then the sleep cycle at night can get further and further pressed backward.

Recently I found myself unable to fall asleep through the entire night. I used my computer to entertain me throughout those quiet hours. Having my sleep schedule so thoroughly disrupted makes the daylight chores very difficult. It is a curious feature to note that most activities are scheduled to be performed in the daylight hours. Eating only occurs at three, uneven times throughout the day, daily bodily cleaning times occur during daylight hours (although there is no requirement for daylight to effect getting cleaned up), medications are distributed in the daylight hours. Very little in the way of daily activities occur in the evening hours.

So now I am back on schedule, breakfast has been eaten, and now cleared. I am nearly finished listening to the daily news on NPR radio, heard on my iPod. Somewhere between now and 11 AM I will be cleaned ( a bed bath) medicated ( a whole raft of pills and one daily injection of Copaxone). In between there will be lots of self time for whatever I want, reading (most easily done in ebook form on the computer, as it is easier to maintain on my chest that holding a book or magazine upright on my ventral surface). These pursuits must be of a quality that can be shut down and set aside in a moment's notice as there is no warning or planning on exactly when the CENA or nurse may enter the room intent on performing their tasks that are scheduled for that portion of the day.

Other interesting activities are best done in the afternoon after lunch as there is a much larger block of time that is uninterrupted. These include editing movies I have made, learning new software, writing responses to mail I have received and items that beg for my input (even if they don't realize it.

One of my morning chores is to see what has come to my email box and clean out the junk mail. One thing that I note has increased quite a bit lately are the number of mail failures to deliver that I never wrote. I have checked my machine for malware (none found) I believe these are spoofs, where some miscreant has snagged my email address from some publicly accessed site like Facebook and my blog. Then they sent off bogus messages to unknown (to me ) recipients, whose spam catcher algorithms bounce the offending emails back to the return address, which has used mine instead of theirs. I must get fifteen to twenty bogus messages returned to me every morning, between 9 and 11, every day. At first I wondered who was sending me mail and would open a few. The message was a simple one sentence or phrase accompanied by a URL for some product or service of no interest to me, and certainly nothing that I would bother anyone about. I figure it is some junior grade Internet marketing device unleashed on unwitting work at home types wanting to earn easy money in their spare time. I find some of the automated responses included in these returned unsent posts interesting, Jenifer no longer works at this law office, I am away from my office for a few days, to the most received this email could not be delivered. Below is a line copied from the first one of these returned unsent posts this morning;

United States Refugee Resettlement Program

The accompanying copy indicated that this was in reference to resettlement of Iraqi and Afgani refugees, that I need to get my application in soon, as the window for application acceptance is closing.