The Food Follies Continue

26 September 2014

Friday

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.  

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.

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.

 

23 September 2014

Tuesday

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. 

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.

14 August 2014

Thursday

Its tough finding enough to keep me busy, here in the facility. Especially when I spend so much time flat on my back in bed. Its not that much easier when up in the wheelchair either. The building and the program are not equipped to encourage much else other than the events that accompany a short term rehabilitation facility.

When I first got here, I had some discussions with the person in charge of activities. Initially the facility was concerned that I wasn't participating with the other residents in the activities. I patiently explained that Bingo and stringing plastic beads held no interest for me, I considered these activities beneath me experiential horizons, which have broadened considerably since the days when I thrilled at playing Bingo. In short I found the thought of doing those things abhorrent. When I was asked what did I used to do when I was at home, I explained that I grew a garden and put up food in canning jars and freezer bags. I had a stained glass studio in my basement and made all sorts of things from large hanging lamps, to Tiffany style table lamps, to windows and pieces that hang in windows, to small objects like glass boxes with hinged lids, beads made of glass and glass jewelry pieces.

That reveal was met with some surprise. I guess they never knew anyone who did that kind of work before. Perhaps it was always seen as some esoteric production performed by those people who have booths at the summer art fairs. Well, such information was countered with the same old standard reply, “We don't have the space for that kind of activity”. This was tinged with the tone that the facility was not going to have that kind of space anytime soon, or ever. The implied message was, we don't understand any of that so we aren't open to learning any of it. Best kiss those thoughts goodbye, cause it ain't gonna happen here. Then I was encouraged to explore getting on the bus (in a wheelchair, mind you) and going to the library to read. You like reading don't you?

Well …, yes,But reading is so passive. And the library is good for reference, not reading s a hobby. I want to do something. There isn't any walking paths (adapted for wheelchair use), or space for a garden, or activity room, or … Well, you get the idea.

A couple evenings later was on the phone with my father and his wife, who had called to see how I was getting along in the new digs. I began to tell them about the activities discussion, that I was moving hard for mitigating for a reduced form of glass studio, a small kiln and so forth. The only response they could offer was that they were afraid that I might hurt myself, get glass slivers in my feet or something like that . I was appalled. I reminded them both that I used to have a glass studio in my basement running several kilns and open flame making beads and no one was worried about possibly harming myself then. So what is this sudden worry now. I only can't walk and stand due to this disease, I haven't turned stupid.

Big silence followed that query/statement.

So far, no one has had any answer to that one.

I used to write semi regularly on this blog. I kept it up for about sixty-five posts. All along I was keeping track using Blogger's metrics. Occasionally some of my acquaintances would log on, but not often. Most of the regular access’s were from Russia on other overseas locations, yet no responses were forthcoming from those locations. Probably some bot set to find new posts. No connections to speak of. I grew discouraged and took a break. I got a GoPro camera at a price break and learned how to use Apple's iMovie. Made a few movies and posted them on Facebook. I got some responses, nice positive ones. The sense of being hidden away out of sight and circulation was lifted somewhat. I was once again somewhata part of the human race, not kept isolated in a facility that shows no understanding of the emotional, social needs of its residents.

Geez what would I expect? They are so heavily medical model here. I imagine that even a psychiatrist would feel as if they were stashed away out of any mainstream in a place like this.

So I left the blog for a while, I was pretty well assured that no one would miss it. Indeed no one has taken the effort to let me know. So it has been gathering dust, the sort that accumulates from not being accessed for a while.

Meanwhile I finally got a different wheelchair, after nearly a year of organized, systematic reportage about how the other one did not fit me very well. I finally got to speak to the doctor, by way of a sympathetic nurse. See the place really does work on the medical model. After burying myself in the software to make movies and shooting some scenes for using in movies, I put some efforts up on Facebook. The first few were met with some success. I felt that I could be involved in something, that might touch others. See, I can still have some minimal input into the human community, despite being kept apart in this misguided form of caregiving.

My last video, planned to show what it takes to get me out of bed on a regular basis, for those who have not the slightest idea how MS really affects a person, who may require some graphic information. Since the human tendency is to believe that if one can use the term verbally, then they must understnd the issue. This video is to drive the point further home. This video has generated just few comments. That is alright. People are used to video being used for entertainment, not any sort of learning or statements. After all, look at the majority way that the other visual medium is being used – television.

Facebook is easy to put videos on, I am learning that Blogs are as well. Now that I am more familiar with both platforms and the movie making software, I can begin to make combination uses of both platforms.

13 August 2014

Wednesday

Another day here in paradise. I just finished lunch and my tray is waiting to be picked up by the CENA staff, an operation at usually takes at least an hour, sometimes longer, post-finishing a meal. Usually, sometimes in this position I just take a nap. Other times, like now, I have had enough sleep and am impatient to do something to occupy my mind. Since the tray is still on my table, and I cannot put the items that usually reside on that table back in their place, I have those items carefully strewn about me on the bed. And now I've got my computer set up on my belly amongst all those items.

It's not pretty or effective, but it's the one choice I have available here in the facility. In so many ways I've had to learn how to make do with whatever is available. This place runs on its own schedule, and its own directives, anything I may request often takes a decidedly second-place position, or is totally ignored.

One of the things that I've had to accommodate to recently is the nuisance noise that filters through the closed door from my next-door neighbor. For those that don't know my history, I used to live in a single house out in the countryside. It was situated in a state game area and had very few human neighbors nearby. I enjoyed it that way. The deer in the turkey would come through my yard on a daily basis and often I was visited by other animals of nature. The noise and associated effects of other humans was blessedly not nearby. I considered that home my Fortress of Solitude. Upon coming to nursing care the residents are also encouraged to consider each room their home. For the most part this is an oxymoron, in that most rooms have been set up for dual occupancy. I was once in one of those dual ocupancy rooms.

Blessedly, I was offered the opportunity, if I chose, to take a single room. The only downside was access to that room was through another single room. The access to the hallway is through that other room. This was no problem as the previous resident of the other room never left his bed. The only noise I would hear from his room was the occasional vocal outbursts aimed at the CENAs. In between that neighbor used to keep his television tuned into a special cable channel that none of the other residents here have access to. His favorite television was a channel that specialized in old Westerns. He often had old cowboy movies playing constantly. Except for the gunfights and the horse whinnying there was always a dull roar coming through the closed door. This new next-door neighbor likewise remains mostly in bed. He also utilizes an antique oxygen concentrator, affixed to a mask over his face nearly all the time. The oxygen concentrator makes a tremendous racket in this particular neighbor uses the television for entertainment, which has the volume set high to be heard over the concentrator. When I do have an occasion to pass through his room in my wheelchair, on the way out to the hallway. He is often sound asleep with the television set at quite loud, set at quite a high volume so he can hear the television over the roar of his oxygen concentrator. Many times this combination has allowed for him to drift off to sleep leaving the television to be ignored except by those who live in the rooms nearby - like me.

The man is polite. I don't believe that he understands how much racket he is making. Often when staff are in working with me and they close the door behind them they will say something to the effect that there is a tremendous lot of noise coming from the other room. But nobody has done anything about it. I ventured that it would be nice if somebody got him some headphones. To that comment I've heard agreements and a statement that other residents use headphones. But so far no one has been able to string the dots together and been able to effect any kind of change. Knowing how people usually work, I would be surprised if somebody actually acted on this. Mostly the standard response is to make a negative comment and then shrug one's shoulders and move on.

I don't have that opportunity. I can't move on.

Often during these cases I put my own headphones on affixed to one of my iPods and I play music at just a loud enough volume that I am not subjected to the incessant game shows, episodes of Judge Judy, and even more game shows. I have seen those shows more than enough times in my life. I realized I have made value judgments regarding those programs. They just aren't designed for me. In fact I find them to be set at such a low level of appeal that I find them to be insulting, degrading, and appealing to the more base aspects of humanity. The accompanying ads are always aired at a higher volume. Car dealers screaming at you, female voices offering plumbing services and much more. It doesn't stop. I feel like such a captive audience and I'm not even watching the program.

There seems to be no relief. I'm stuck in this facility, and no matter what I say, this seems to be the best way of operating that they can offer. I am surrounded by mediocrity, the endless continuing offering of a menial experience. And no means insight for ending the onslaught.

I have what is called a care conference coming up next week. These are conferences held at regular intervals to examine and discuss with the resident and their family members what the progress is been and what to plan for the future regarding their treatment here at the facility. My family has never come to any of these, I seem the only person in that meeting who is supposed to be looking out for my best interests. I have mentioned to the staff at these meetings previously that there are certain concerns, the quality and timing of food, lack of interesting things to do, many other concerns that I have toward creating a supportive arrangement that would encourage one's rehabilitation in this facility. It's defeating every time I bring something up to have my concern acknowledged and then instantly explained away by phrases such as "that's too expensive", there's no room to do that here", "we've never had anyone request that before". And from that point on nothing ever happens. Everyone signs their form, files it away in the required places, and they go on thinking they've accomplished the next step in attending to my care.

The reality is I am being cared to death. And it's not even a care that encourages my growth and enjoyment with the surroundings. That understanding never seems to dawn on them. Here in this facility means getting three meals a day and are you being washed sufficiently. There is no understanding therefore no care toward intellectual challenge, emotional support, or expectations from a previous lifestyle. I suppose that in the short run, as in a rehabilitation setting, where the average stay is several weeks before they resident returns to their own home.

However, I have no home anymore, that had to be surrendered in order for Medicaid to accept me. The staff here knows that, and all I get is lukewarm acknowledgments of that traumatic fact. There is no visible actions designed to even meet that idea. I am left to adjust as best I can to the realities of being forced to live at the lowest common denominator as if it was the best that could be done. That's fallacious. It's the best that can be done under the conditions of the ownership of this place, which is to squeeze every single penny of profits out of the operation. This only makes that lowest common denominator, even lower still.

I feel reduced to a point that even people incarcerated wouldn't put up with.

It's difficult to continue living in a situation where the people with whom which you have contact profess a want to make your life better, but in reality they have no idea how were they are making your existence miserable. These people think that depression something that you fix with the pill And they have no idea that the depression one may be experiencing is caused by them and their behavior, the conditions in which the person is kept. The fact that the facility offers no possible changes on way out of the situation only makes it worse. That notion completely evades them. I'm afraid we're all on our own here.