A response to a friend's less than well thought out atempt at humor and being disabled. 

J.W.

23 February 2014

Sunday 5:00 AM

There is a wrinkle that remains folded over, a ruck that bothers like a stone in one's shoe. The disturbance keeps demanding attention, the intensity mounts. On one hand I want to overlook it, chalk it up to good natured ribbing. But the pain continues, bringing me back to the anguish of a wound not expected.

I realize that humor is a form of tension release, the building of energy that may be counter to prevailing expectations as a punch line is explicated stands our following the development of a joke on its ear. Laughter ensues as we reconcile the two endings, the punch line and the internal understanding as we anticipated the unfolding story. Many people laugh for similar reasons but the story is not some hypothetical, third party story, it is the uncomfortableness felt as someone is set apart from the group and publicly pilloried. The stage act of Don Rickles or a person being roasted at a dinner act as examples here. These examples may be tension inducing and the release needs to be effected, but they are more like watching a bully asail a victim than something humorous.

Yes I realize that some people have no compunction about bullying tactics, perhaps they weren't raised with sufficient input from patient and loving adults. Or maybe they momentarily lapsed their own ability to understand the impact their behaviors could have on others. Either way the recipient of such unfortunate attention may wish the humor impaired perpetrator Godspeed in a swift release of their own internal tension. And since one of the best relievers of tension the body knows is to experience sexual release, the familiar epitaph to go fornicate with one's self quickly rises to the occasion. There are more succinct and rude ways to state this helpful bit of information, many of which are well know to the public. No need to repeat them here.

There are many related and yet not easy aspects to this disease that many people fail to consider. From the CENA helping with my two (count 'em only two) showers a week who after putting my socks on my feet, she lets go of the foot when she has finished to let it drop to the floor – that hurts! To the CENA changing my urine soaked sheets of my bed while I am still in it (a standard hospital technique) who asks me to lift my leg to help her out.

People fail to understand or realize that this disease has progressed to the point where from my sternum down to my toes I have no voluntary control of my muscles. I have reflex responses, but there is no control to those. I cannot stand or walk, I can't roll my ankles in bed, lift my leg or bend my knee. In addition the sphincter muscles (which at rest tighten and close – much like any perching bird or an owl's feet), I cannot control to open and void my bladder or bowel. For over a year now I have had to wear what is basically an adult diaper to catch my bodily effluents. This runs exactly counter to our earliest successes, the graduation from diapers to pull up underwear. The effect runs deep.

There are so many little losses of physical abilities which I had grown up wielding without a second thought, now they are gone, sometimes overnight. Its frightening, how soon will I become entirely dependent on others for everything? I feel partially locked into a noncompliant body now, how long before I cannot speak, put on my iPod headphones, work my computer? I see it in this facility all the time, residents who are washed in bed then put in front of a television for entertainment all day. How long before I join their ranks? I am still getting used to having my briefs (diapers) changed five or six times a day, many of these have gone too long and the sheets are soiled and have to be changed as well. The CENA staff tell me not to worry, but it still feels like a failure on my part, I'm at the same level as a toddler. I used to do better than this. There is no easy way to ease into this.

If I make some self-deprecating double entendre that is my choice. When someone else refers to my loss of bodily function directly trying to make humor - that is crossing the line. Like when a waitress in a restaurant asked me what my blind friend wanted to order (assuming she couldn't order for herself), fire works ensued. Or the coarse ruffians entertaining themselves pickpocketing the carry bag one of my quadriplegic classmates had slung over his wheelchair. Its easy to take advantage of the disabled, nearly anyone can do it, many do, even if the attempt is a feeble play for humor. There are just some things that shouldn't be attempted. One would hope that we as a culture had progressed further than that. Perhaps someday. With any luck this progression might occur at the same time as I become totally dependent on others. One can hope ...

One more added entry.

J.W.

22 February 2014

Saturday afternoon

I've been noticing lately that I have been feeling somewhat sick at heart. An abandonment, sort of, a longing for something I used to find, but that quality seems lost on others. When I couldn't find this in others, I would retreat to the woods to ramble for timeless hours or perhaps take my camera to the garden with a macro lens to see the very tiny that surrounds us. Its rare to find someone who can meet me where I am. Someone who doesn't have to fill the space where sound exists with a constant stream of verbalizations. Someone who understands the space between words reveals an empty tableau that could become anything, not necessarily audio, much as seeing beyond a picket fence reveals another scene in the distance – perhaps the tree in a neighbor's yard.

I've had this affinity for the non-specified since about early childhood. I could find something that no one else noticed and be fascinated for hours. Art, then photography intrigued me, over time the balance of the elements slowly revealed themselves and the ability to manipulate elements of the scene to evoke ideas and emotions became suddenly open to me. I had found that reality if, given time, would speak to me more completely than the way most people use words. In my beginning years at college most classes were presented in boring, lecture format. I can't be too critical though, most people have only been exposed the the expository form of sharing information.

Rather than using words in a fashion that turns everything into an object to be connected in a linear fashion, so sense can be constructed to give to others, the slower, more complete method was completely ignored. By the time I finished my masters degree, I thought there must be a better way. I was lucky to find the Center for Humanistic Studies in Detroit. There I learned that there is an academic way of learning that was not like every other graduate school. There was the usual reading and lots of it. But the topic was very different. We were exposed to authors like Heidegger, Polyani, Maslow, and Rogers and had discussions for classes about the readings, our understandings and felt sensations resulting from the experiential exercises we had undergone.

There is something that turns inside of you when the shift is away from word based, material based manipulation of information as a way of communicating and being with another. Colors become more vibrant, sounds become more significant, even the squeak of a chair has something to offer. Classmates take on a vibrancy and seem more dimensionally real and less like ships passing in the night. There were no notes from these experiential exercises, it was a matter of being there. And yet at the end of each semester, for each class we were to write a scholarly paper about what we had learned using these experiences.

Those who were very familiar with more standard forms of education often had problems with the format, those who were more artistic, wrote poetry, danced, played music, thrived. We had to know all of the standard material, for the licensing exams were based on this, yet the school managed to slip in enough of the experiential approach to make the program unique.

After school I missed the special camaraderie that my classmates shared so easily. I found, doing couples work, that even most married people don't share this level of openness with one another. Most people speak in the pattern that they have always known. It seemed as if I was a castaway on a desert plain, acres of desiccation. Years ago Dire Straits had a song that describes this situation perfectly, Water of Love. Things seem so drained of life. There are signs that things haven't always been this way, but it sure is now.

I used to go for a walk in the woods for my dose of the non-ordinary reality, there is no woods around here, nor any walking either. In the warmer months I can get outside, there is even a small raised planter that brings some simple petunias up to wheelchair height, now its buried in snow, the only flowers in here are plastic. Its difficult to lose one's self gazing at those, images of the petrochemical industry keep intruding.

At least one CENA on every shift enjoys visiting with me and we can begin a number of discussions, but I seem to have generated an alternate reputation in that part way into a discussion a different CENA will poke her head in the door and say to the first CENA, “Oh here you are, I thought that you might be here, I need help with the woman in 312.” There are the dangling ends if many interrupted, unfinished discussions hanging about. Some still throbbing with vitality, others desiccated, dry and stiff from too long left hanging.

It amazes me how facilities such as this seek to look after the resident's physical needs, but have little idea about the person's mental and emotional needs or how to meet them. At times it seems that I speak a foreign tongue. I know the words are heard, the blank look on the faces tell me there is a struggle to understand exactly what is being said. What could I be talking about?

I can only read some of my old texts for so long. Its like seeing shadows of some former times through a gauze veil. The hint of the fresh breeze that was, is just a stagnant pocket of air now.

Send Spring soon … please!

John Whiting '00

A selfie one Saturday, nothing to do.

Another catch up entry.

J.W.

18 February 2014

Tuesday morning

3:45 AM

I was awakened about ten minutes ago by the presence of someone entering my room. Its a defense mechanism, I guess. Even in sound sleep there is a creepy feeling that gives me the willies when someone comes into the space where I am sleeping. It just wakes me up, instantly, no grogginess. I am catapulted straight to a full waking state.

Normally this comes into play when the third shift CENAs come round to check and change my briefs, an event that occurs two to three times per night shift. This is normal and I have become used to it. I get along well with the ladies on the third shift. It demonstrates that the institution is serious about looking after me, making sure I don't sit in my own effluents too long. I appreciate that.

This was not one of those events. It occurred about an hour after the last brief check. I was asleep, with my CPAP mask on, connected to an oxygen line, when suddenly I was drawn to full waking consciousness by the presence of someone entering my room. Through the door strode this tall fellow wearing a dark gray T-shirt and a faded navy blue baseball hat and a pair of tidy whiteys. Silently, as if he were inspecting the facility he strode in, leaving the door wide open behind him. I could hear my neighbor's television in the next room issuing forth with its all night television programing. About five feet into the room the interloper spied the open, darkened doorway to the bathroom attached to my room. He turned and walked in there without turning on the light.

From the darkened bathroom I could hear the small sound of a slight stream cascading into the toilet. A remarkable feat coming from such a dark place. Like many males, he did not flush the toilet nor did he make any effort to wash his hands in the basin, which I'm sure works equally well under conditions of darkness. Then the inspector blithely walks back into my room with his hands clasped behind his back in a most leisurely fashion, as if to imply that nothing was amiss. He slowly made his way back through my room and out the door by which he entered. He didn't bother to close the door behind him as he left, my next door neighbor's television continued to spew that mind numbingly lowbrowed programming out into the vastness.

My neighbor is a cantankerous sort who has sustained his own special indignity to live here at Dead End Acres Rehab Center and Nursing Home. He is a former truck driver who has had a left hemisphere stroke. He does speak, but I have no idea if he has such a limited vocabulary because of his stroke or his previous lifestyle. He seems to delight in verbally abusing the CENA staff whenever he can. His vocabulary rests on the extensive overuse of “bitch, whore, the F- word, and goddamnit”. After which he manages that partial smile that is the hallmark of many stroke patients. His bark is way worse than his bite although he does on occasion strike out with his good arm. When he is awake he guards his room fiercely. Due to some lapse on the part of the original architect when the building was built the entrance to my room is gained by going through my neighbor's room. So much for privacy, of which there is none around here. No CENA or nurse can enter his room whether my neighbor is in bed or in his wheelchair, without being vocally accosted. He makes the perfect alarm system for anyone approaching my room. Except it was late enough in the night that even my cheap alarm system had conked out and was fast asleep – with the television running.

The middle of the night visitor was only gone a short moment before he returned. He must have stepped out of Joe's room (my neighbor) into the hallway, become confused and returned to see if anything in my room made any sense. I have been pressing the call light with great emphasis, which does absolutely nothing to make the CENAs appear any faster. One of only two CENAs on duty eventually appears. I tell her of the unwanted visitor. She tells me they have been having trouble with him all night. She says they begin to check and change one resident's brief (a tag team event) and this character gets up, puts his hat on and goes exploring. They are right now trying to find him.

This is the problem with being in a facility like this, they will accept anybody from the hospital at first, then they determine if that resident is too disruptive for the facility and maybe the residents.

6:30 AM

Eventually I submit to sleep. Reconfigure my CPAP mask, park my glasses in a safe spot and catch up on my interrupted slumbers. Two more times the night shift CENAs come in to my room looking for the explorer. He wasn't here.

7:40 AM

I awoke at seven-thirty and set the sleeping arrangements aside, getting my tray table ready for breakfast which can arrive as early as quarter of eight or as late as eight- thirty. Then yon wanderer again enters my room. I get a good look at him this time, I have my glasses on. He is tall and thin. His hair is blond and quite unruly, headed in eight directions at once. It looks as if he combed his hair with a pillow. Wearing a flannel shirt with a blue and gray pattern, and a pair of tidy whiteys. Here walks into my bathroom and all remains silent. Meanwhile I have again been pressing the call light button hoping that someone will respond in a timely fashion. The mysterious visitor has again left the door open behind him. I look beneath the tray tables to see the light blue pants of the nurse's uniform approaching my door. I just hold up one hand pointing to the bathroom. The nurse comes right in and goes to the bathroom. She sees the nightly wanderer and asks what does he think he's doing. “Why, getting ready to see the doctor' he replies, sounding very confused. This isn't your room, its not even your bathroom. Come with me, I'll show you where you need to be. Looking very disheveled the wanderer meekly follows the nurse out my door. Again, typical for the nurses here, the door is left wide open. Joe's television blares some morning show to a now empty room. Joe has been retrieved from bed and placed in his wheelchair and removed for the day, leaving his television to wear some sort of endless soundtrack into any who are nearby.

Throughout the day I hear more and more about the tall wanderer. It has the quality of gossip, not much should be made of it, except one thing, the tone of voice. This guy has the CENAs creeped out. They are leery of him. I don't know if he is dealing with elder dementia issues or a stroke. But caring for him looks to be a huge demand of time that the CENAs really don't want to take from their other residents.

The one thing that is nice to see is that the CENA staff does show some concern for delivering quality care. I must have done something right to not give the administration reason to pawn me off on someone else. This place may be several levels away from competing with the Ritz, but their collective heart is in the right place. That makes all the difference.

Keep your humor dry.

John Whiting 

somewhere in southern Michigan

23 February 2014

I have been away from this blog due to having a collapsed lung and ensuing antibiotics. I was extremely tired and had no energy or willingness to write. I'm better now but i got out of the routine. i will add some writing I have done lately, this may help to explain the jump in dates at the top of the page.

J.W.

9 February 2014

Sunday – a grey day

It is a particularly grey day today. Typical for Michigan being down wind from a large patch of open water (read: great lakes) that rarely freezes over, the constant influx of additional atmospheric moisture makes for a long season of overcast and grey skies. For a Michigander the overcast of winter can just be too long about half way through the season. This is when the “blahs” begin to show up. Let's just be done with it already. Spring can start anytime now.

All of this is made worse now as I no longer can go for a walk, go ski in the woods or any of those physical “work off the winter blues” activities. I even used to enjoy cutting and splitting firewood for next year's heating season on cold winter days. All that has changed now. I get to let the winter climate stream through a closed window any more. The view is bleak, the sky grey, and the three story Juniper outside my window just holds snow on its branches as if to mock me that there is at least snow to play with.

Having no children, I never was privy to watching the passage of time play out before me. I always felt as if I were in my early thirties going on whatever my chronological age was. I never let the idea of age bother me. This worked for a long time, I seemed immune or at least “removed” from getting older. I saw myself becoming not as young and still working, but just a little less, that's all. I had planned longer vacations, maybe with a theme, like retracing the Louis and Clark expedition – in stages. Maybe make some photographs accompanied by a journal of the trip. I could turn it into a book … I was going to ease into the second half of my life with style and grace. No more struggle. No more worrying about anything.

When I was 59 or 60 (I'm 62 now) I was diagnosed with MS. In one quick action I was plucked from my vision of the second half of my life and moved directly to the next phase after that. I am now a member of the “Old Guys”group. I sleep in a hospital bed, in an institution, have 24 hour attendants, am fed according to someone else's choices of what I should like and when I will eat it, can't get out of bed on my own,I wear big adult diapers, which don't always hold everything, so I often sit in urine soaked sheets until the overworked staff can get a moment to change me and the bed. This is what I expected when I hit ninety, not sixty. Where are those golden years I was looking forward to?

This is my present backstory. Then this morning I learned one of my high school friends succumbed to leukemia last night. Boy, suddenly my peers are dropping away a little faster than we expected. My friend Miles and I always planned on collaborating on some photo projects, trading stories from our shared past, our careers, you know, that second half of life stuff. Each of us got hustled out of that in a hurry, right into the “Old Guys”group. Where the skim of invincibility shows itself to be more wishful thinking than a matter of fact that I wanted to depend on. This comes on you with the same fierceness and finality of discovering that while you thought that you were fully clothed, walking through the center of town, you are actually naked. The boundary between living and surviving draws tighter while the possibilities of that final exit loom at the edges.

I know that any of us can die at any time, but it is when feebleness is your closest associate that the bleak result moves as close as just over your shoulder. I wish that Miles had been able to keep the leucocytes in check (he did) and get the red blood cells to recover (they couldn't), that was the plan. But not everything adheres to the plan.

I wish that I could get out of bed unaided, walk to the bathroom and pee in the pot. But that simple pleasure left a long time ago. I am thrilled that I survived a partially collapsed lung a few weeks ago(due to the MS not permitting full expansion for deep inhalations). Survived the ensuing infection and all the antibiotics. Now I am on oxygen with a cannula living halfway up my nose 24 hours a day. They say that getting old is not for sissies. I can attest to that.

I know that things will look better another day. I have had enough for now though. Too much has happened to just keep on smiling. I hurt in a non-physical way. I'm tired of the “Old Guys”group and its special concerns. I just have to give it words and let it go. Just writing this has helped. I'll drift to sleep tonight listening to the blues on my ipod. Thing will look different tomorrow.

Thanks for providing me a place to share the load.

Sometimes too much is simply too much.

John Whiting, 

somewhere in southern Michigan

15 December 2013

Sunday morning

Today's continuing installment 

Here we are, the last half of the weekend. The weekends are the worst. The higher level administrators are not around so the low level folks end up running the show. The problem is that the higher level administrators are salaried, and so their work hours are 9 to5 on weekdays. Technically they don't have to been here on the weekends – so they aren't. I imagine like everyone else the weekends take on a semi sacred flavor. The last thing anyone wants to do on THE WEEKEND is show up at work. So they don't. Not everything we set up takes the weekend off, keeping astronauts supported in space, for example. Its hard to imagine, “Houston, we have a problem” and the weekend crew are theonly ones around. “Ah yes, Apollo – can this wait until Monday?”

Once, during the week when I was having a particularly difficult time getting anyone to respond to my calls using the call light, the Charge Nurse, upon hearing my complaint said, Yes John, I understand. We were, all fifteen of us, in a supervisory meeting, downstairs. And you know how it works – when the cat is away, the mice will play.” I hate to think that my care is being handled by the equivalent of small rodent brains. I used to have pet mice as an early adolescent, mice do not have a very wide ranging world view. The simile is not lost on me, even though I realize that the Charge Nurse was using a figure of speech. Sometimes we speak volumes in the innocence of colloquialisms.

So weekends have devolved into two day bridge events over less than ideal conditions. Having experienced sever weekends in nursing care, you don't want to experience such events. As the clock unwinds on late Friday I find myself involuntarily bracig for the upcoming hours of sloppy thinking,smaller than usual viewpoints and a sudden inability of the CENA staff to understand anything beyond “gosh we are so over whelmed” mentality.

About two weeks ago the resident population was low, people don't tend to schedule elective surgeries and such medical excursions during the holidays. The population on the floor was thirty, which is below the capacity. So,in order to keep costs low the number of CENAs scheduled to be on duty was trimmed back, there were two CENAs for the whole floor, according to the CENAs themselves. Responses to the call light extended to twenty, thirty minutes. When the CENA appeared at the door the seemed harried, usually in a voice whose qualities reinforced this notion they would say something like we are swamped, there are only two CENAs on the floor. Being an empathic sort I get the message very clearly – these folks are feeling rushed and like someone on an assembly line moving faster than the can keep up, they are in the beginning phases of frustration. People get to the work when they can, but it may take a while.

One thing that makes this running-on-a-tight-margin operation difficult is that communication is severly hampered. Unlike being in a hospital (as is my experience), this place has only call lights. This entails a push button at every bed that sets off a light at the nursing station and an electronic beep that repeats incessantly until canceled. The beep is obnoxious andloud enough to be heard the entire length of the hallway. This is, I imagine, so that the call will be heard and responded to. However human beings are more adaptive than this. A constantly ringing call light can eventually be successfully ignored if one tells them selves that they are busy with this resident, someone else will have to get that call light, but there is no way of knowing who that other responder might be. This system inadvertantly shaped the behavior of the CENAs like Pavlov's dogs to not be responsive. The other problem with the call light system is that no one knows what the call light is for until someone physically walks into the room and asks the resident what is needed. This touches on a problem previously mentioned, that the tone of voice the inquiry is spoken can imply lots of information. An exasperated sounding “what do you want” gives more of the wrong message to the resident than is ever intended, plus it takes up a lot of time on the part of the CENA.

Whereas the hospitals I have been in use an intercom system. When the resident presses the call button a signal at the nurses station opens a channel to someone manning the response board. A pleasant, unharried voice responds inquiring how they could help. A vocal transmission is elicited, the information is exchanged quickly, directly and without undue wear on the CENA staff. If some equipment is needed to assist the resident (like an easy stand) this can be collected on the first trip to the resident without having to make a separate trip to collect the equipment after finding the resident's request.I have mentioned this before and it is usually brushed off with some half-hearted reason as towhy it hasn'tbeen done before, too expensive, or it breaks down or some other answer that tells more about the speaker than anything else.

It is Sunday morning and I am sitting in the same briefs I was put in after my shower Friday morning. Not many people willingly wear the same underwear three days in a row, except for here - on the weekends. Things are looser on the weekends, the cat is away and everyone knows that it is the weekend when they are working. I imagine the kick back attitude that pervades the culture creeps in here. I hear the staff as they compare notes with one another, “No I can't, thats my weekend to work”, they know where in the week they are, and it always means the weekend is different. Different rules, different expectations.

Now the weekend spent in the same undergarments may not be that earth shaking, other people have managed this before, I'm sure. But I am operating under different circumstances. I have Multiple Sclerosis and due to that cannot stand or walk. I am basically disabled from the sternum down. I can't roll over, if I am placed on a toilet when finished cannot lift one cheek to clean myself, formant of the activities of daily living I require help. I can use my hands but I am limited to the position that I am in at the moment. Usually first thing in the morning the CENA used to ask if I needed a bed bath before breakfast was produced. That, however has gradually subsided over several weeks until that is a rarity. I have asked to have a bed bath, which includes a new brief, only to be told, “Later, we are extremely busy now” (staffing remember?)Only problem is later never comes. Used to be throughout the shift I could repeat the request, but lately I am visited so little by the CENA staff that (weekends especially) I see them only twice per shift. And even then they are busy.

This week the results are the same but the reasons given are different. Last night the shift nurse told me that she was late bringing my three PM medication at nine thirty PM because they are swamped. Five new admissions in one day, so much paperwork, they have even called in extra CENAs, there were five working at that time. The vocal tone factor comes into play loudly here. And still I am pretty much left alone.

Some of the staff have told me, “John, you are too easy. You need to press the call light more often.” Wow, thanks for your fix on the situation. I never thought of pressing the call light to get help, what a great idea. Meanwhile I press the call button when needed, wait twenty minutes, on average, to get the same vocal exasperation expressed to me about how rough it is being a CENA these days.

The administration ought to don a CENA uniform and just spend some time on the floor. They don't have to be undercover or anything clandestine, just be here. Oh, their presence may cause the staff to be on their best behavior, but is that so bad? They might find out how things really go during the week.

The progression of events this weekend was; Friday morning I receive my shower. I start off clean and dressed in clean clothes and a new brief. The rest of the day nothing special. Thursday morning the CENA assigned to me steps in the room shortly after six AM, greets me pleasantly and drops of the daily bath linen for later. I never see her the rest of the day. Next CENA visitor is a person whom I have known since I have been here, she comes across as Eeyore, always depressed, mopey in presentation with a wiff of waiting for Prince

Charming to appear in a sort of demandingly expecting sort of way. She never uses words that could be used against her, she is very careful that way, but the mood says it all. I'm glad to see her too.She arrives at approximately noon bearing the lunch offering – nothing to write home about. I never see her again.

The next in the line of CENAs parading through my room was a male who usually works the second floor. We share some personal tales about the joys of winter camping and backpacking. He had just returned my neighbor to his room in his wheelchair, when he stopped in to check on me. He was surprised to find my lunch tray still waiting in my room at three PM, I had finished the meal two and a half hours earlier and he was mildly intrigued that the empty tray was still here. I told him about my request for a new brief and the pattern of ignoring my being here as much as possible. His helpful advice was to use the call light to get the help I may need. Notice how quickly the weight for the situation was deftly shifted from any impetus to help, even if taking my message to another CENA, on to me. He leaves taking the now long forgotten lunch tray with him.

Following his helpful advice I press the call light after he leaves. The CENA who apparently is assigned to my care appears several minutes later to find what I require. I tell her I would like to have my briefs changed. She tells me that she will be back in a moment. I don't see her again. Dinner is delivered by a different CENA around six PM.

By eight-thirty my dinner empty dinner tray is still here. I can't clear the extra items from my bed because the tray is taking up the space I use to move these items from sharing my bed with me. My briefs are now soaked from two days of use, I have difficulty moving the bed coverings to access my briefs to use the urinal when my bladder signals that it needs attention. I was disgusted with the lack of follow through from the CENA staff, the usual weekend slovenly follow through and that I was now sitting in soaked briefs for several hours now. My dinner tray was still here taking up space so that I couldn't set myself up to take better care of myself, so I stuffed a terrycloth shirt protector (bib) from the now long past dinner, into my briefs to help soak up some of the urine to be met through the night. Being too sleepy to stay awake, I put my CPAP mask on and let the bed down to go to sleep.

Next thing I know is that the second shift nurse is calling to wake me up to administer my three PM medications, as noted before, at nine thirty PM. The tardy dinner tray had been removed, the urinals deftly placed fully out of reach. I explained to the nurse that I was not happy as I had not been able to achieve a brief change over the entire weekend. It was she who said that they were swamped with too many intakes, that they had five CENAs on the floor, she would have two of “the girls” come down to attend to me when they are finished where they are. After she left I cleared the bed, now that then tray table was clear. I put the CPAP mask away so it wouldn't be in the way when “the girls” came to clean me up. I put aside my iPod and got ready for the expected to be helpful CENAs. By ten minutes to ten (the shift ends at ten) I realized that if they hadn't arrived yet, “the girls”weren't going to show up.

I reassembled the sleeping paraphernalia (CPAP mask, iPod and ear buds, made sure the extra absorbing clothing was secure in my briefs) and waited for sleep to arrive. Off and on throughout the night I awakened just enough to observe the strange sensation as my bladder was full and the trickle of relief in my pants. Through out the night I slept well but uneasy as bodily functions continued unabated regardless of the needs and perceptionsof the CENAs.

It is quarter passed ten as I write, the CENA who delivered breakfast got an earful of how I was not happy regarding the same briefs issue and that I wanted a bed bath. She was polite and appropriate, she listened and said she was sorry, that she would tell the CENA who was assigned to me. Breakfast has been eaten, as much as I could tolerate, the tray has been removed by yet another (different) CENA, and I am still sitting in the same soiled brief from Friday.

Its another weekend and everything is normal according to the way things work around here.

As the old post cards used to say, Having fun, wish you were here.

Self Portrait 

14 December 2013

Satiddy

Being in two states at once

how to step over the threshold

Dead to the world

I woke for good this morning about six AM. I had been dreaming. It was one of those last dream cycle dreams where your unconscious has already spent the night going over events of the previous day, had given you all sorts of impossible tasks to complete many times over while you finally get an understanding of what ever you have been trying to work out, until the last segment of dreams.

Often these are fanciful, like having discovered the secret to levitation on a moderate scale. It occurs slowly and you only float inches above the ground. It takes along time to get there so you are not going to make any great escapes from bad guys or anything like that. Or dreaming of having learned how to move like kangaroos do with great leaping bounds, often twenty to thirty feet at a time. You try to tell everyone but no one is interested. In fact they act as if they can't see or hear you. Here you are, busting with this knowledge that could change humanity – and nobody seems capable of paying attention. One time I dreamt that I had created a beautiful series of photographs that depicted infinite wonders of the universe. In that way that one can learn more from a picture than any amount of words, the way an image slips right past the defenses and patterned way of prior understandings that dupe us into believing that we know when we really don't. Our prior knowledge that keeps us from understanding any further. It is often based on that which everyone in our culture knows and is propagated through words. I couldn't get anyone to look at the pictures, it was like they were all ignoring on purpose by some secret command.

In this way we as individuals are effectively kept within the range of the group as a whole. No cowboys here thank you, iconoclasts need not stick around, we know all we want to know, just keep on moving or be the same as the rest of us.. These dreams are not only highly visual but are accompanied by a felt sense that is stronger than any other type of dream. Much like the theater organist would play a score to accompany the old silent movies to enhance the mood being portrayed on the screen, this felt sense added a fuller dimension to the dream. So full, in fact, that it seemed there had been a reversal of parts to the dream, as if that theater organist had become somewhat overzealous and was making his part more present than the film images.

Puppy dreams

These end of sleep cycle dreams were mostly about the felt sensation than the images. In fact there are many times in the progression of these dreams where the feeling continues on and the images have temporarily ceased. Sometimes the images of the dream fitfully develop, as if the images were being made up to fit the feelings. It becomes very clear at this point that the feeling is the most important part, that the visuals are what we create to augment and shape the felt sensation.

This seems to run counter to the science we have all been subjected to, that we are visual beings, our brain uses most of its massive amount of neuronal capacity to process vision. Or that the brain cannot tell the difference between an imagined event and seeing the real activity. Athletes use this visualization technique all the time. We all do this all the time without realizing it. Our brain is encased inside of a dark cranium of bone with only sensual peepholes open to the outside. From these bits of information we construe the world in which we live, develop a pattern of understanding and expectations about that world, and then boldly strike out to be in this world of which we don't have any more sense of the realness of it than our capacity for confabulation and delusion can carry us onward. No wonder society changes, as Max Planck once said of science “One funeral at a time”. We are all blind. Some of us leap to the fore exclaiming that they have it sussed. The concept of memes comes into operation here as people don the mantle of scientific explorer and explainer, or moral interpreter, the image presented becomes more and more accepted until the cumulative weight overtakes even the strongest and most resilient. A culturally accepted understanding prevails which if we buy into we gain certain behavioral privileges. Like earning a driving license, graduating from an educational program, obtaining a job – which in turn bestows even more benefits.

The mass delusion is ubiquitous, rampant, and self perpetuating. It is everywhere and is relentless in the way that memes can do, like viruses they take over our body (through the mind) to ensure that the illusion is maintained. There is no mastermind behind this, no bad guy onto which we can lay blame for this condition. It is us. We have allowed ourselves to become infected with this malady. Some of us play the part of social administrators keeping everyone in line, others of us play the deviant finding ways to push the envelope of acceptance and yet remain within the fold.

If we try to confront this situation solely with the mind, we are only binding ourselves deeper into the morass. Sort of like trying to dug a hole in a large body of water using a shovel, the chore is going about the task using the wrong tools. So trusting on the mind and its ability to manipulate logic that we fail to recognize a solution even as it is knocking on our forehead. It is there but we don't see it.

Along comes Candace Pert and her research, very scientifically oriented, without flaw. 

Candace Pert

Everything is according to standard operating procedure, and yet her discoveries immediately answered some physiological questions but also the implications could not be stopped there. Through her work we have been able to see that our bodies are a repository for our unconscious, that thought and electrochemical neural messages are not the only manner the body is able to move information. The body also can very quickly know what is going on at the other end by chemical messages alone, nerves are not involved. We often sense this as a felt sensation. This began an investigation into how our felt sensations were more than mere emotional enhancements, like spice is to food. Feelings are real conveyors of information, they are of value, they are trying to inform us of something. The old time worn idea that they are poor imitators of valuable data has now passed. But as Planck's comment mentioned above cites, don't expect any changes anytime soon.

So this morning I awoke with this very interesting dream, not only echoing with fecundity in my mind but I realize that I was dreaming lucidly before I awoke. The dream had a continued sense that transited from the sleeping state into the waking state. The transition was seamless in that was not interrupted as dreams usually seem to be, rather the dream took on the added component of an experience that spanned two different states of being. It lent itself to the knowing that we are awareness that can exist in many states. Our responses depend on which is the present state in which we place ourselves.

This leads to another understanding, that we can bring ourselves forth into another state , by bringing ourselves forward, to step over the threshold, and enter a different realm than one we are familiar with. It is possible to see this often when someone goes beyond what can be attributed to practice as in an athletic event or a series of patterned behaviors. This is not doing the same thing with renewed vigor, it is more like doing the same thing with a renewed self. A different self, much like the older self, the more familiar self, the one that we have become used to with the same old caveats, the fears, the sense of inadequacies, the hopes and dreams – all of the beliefs that we have saddled ourselves with that impede that actualizing of our own true sense. The self we know is often a shadow of our truer self, one which we know is inside of us but often very difficult to bring forth before others. So often we fail and present our smaller self, which can be detected – usually by felt means. Like the world presented in the Flammarion Woodcut, we find ourselves in it but we are vastly different.

Flammarion Woodcut

We know when we are showing forth in one realm or the other. Some of us even know what was holding us back, but to know alone is not enough. That feeling component enters into the mix.

When we are hitting that mark everything seems to be in an expanded state. We tend to know not where our physical boundaries end and find ourselves feeling "connected" with the rest of the world and everything in it.

During this dream I sometimes dreamt that I was interacting with my former wife and for some reason she was actually responding to loving inputs and little acts of adoration in a positive way. Then, like a radio that was failing to hold the station to which it was tuned, she was just off the mark. Acting calculating, judgmental, accusative and suspicious (which more and more grew to be her favored way of acting/being as time went on). Various vignettes of tender moments would pass by my awareness and she would be one sort or the other. The contrast was amazing. Throughout it all I can feel my sense of affection toward her and at the same time feel her response or lack thereof in return. Toward the end of the dream she was settling into being more and more as if she were operating from her head and not her heart, which is just the way the marriage ended up. I woke up with a strong sense of wanting to love and appreciate someone and there was this tremendous feeling of a void in return. That is very disorienting.

Normally it is said that when one gives out love, more returns. The caveat is, the other person has to be in the same relationship at the same level. Otherwise, love pours out and is met with a resounding silence of nothing.

This is how I started up my day and I have been astounded to note that the feeling I get from most of the CENAs that have interacted with me is one of conditional acceptance. There is no sense of love being returned. It would be quite strange except for the fact that this is, sadly, normal in my experience of this place.

I can't help wonder if my wanting to hold the staff in a sense of appreciation and acceptance might be more flavored by the "Stockholm affect" then real altruism? The conditions for Stockholm affect are certainly in place. I am, for all intents and purposes, dependent on the goodwill of the CENA staff to get various things that I need - in the sense of physical needs, food, clothing and shelter. It seems that they are steadfast against showing or allowing any form of altruistic acceptance. I wonder if there is a fear of not being "professional" and that they may find themselves under some kind of administrative reprimand or something. I am not talking about flirting here, or any other physical or lascivious behavior. I'm talking about simple accepting and allowing someone to be who they are. That seems to be next to impossible for just about everybody here.

I often feel like Gulliver in a land populated by merely the shadows of the people who actually could be here, if only they would let themselves.

And so goes another day of supine paradise.

11 December 2013

You can continue to turn the other cheek

but some fools refuse to notice there is something wrong,

Meanwhile, I'm running out of cheeks

Yesterday I found myself in a foul mood. Surprisingly I began the day in for good spirits. It was my shower day and I always look forward to those. However, after the shower things began to go downhill. Upon returning to my room to collect a few things to utilize during my foray in the wheelchair I discovered that while I was in the shower someone had been in my room (totally legitimate of course) but in the course of their being here attending to their chores some items on my tray tables were knocked off onto the floor. I could tell that they had been disturbed as they were not in the usual positions in which I leave them. Most distressing to me was that my iPhone was placed back in the container in which it was resting without most of the other stuff that also resides in a container and the phone was in a different position. Now I've been in this room several times in the past when various CENAs have moved the tray tables and the phone has gone to the floor before. One of the staff actually dropped her phone onto a hard surface floor once and the gorilla glass on the front actually cracked. She contacted Apple and they told her that the phones not meant to be dropped and they do not replace the glass. Her phone still works but there is a big spider crack on the front of the phone. I realized that these are somewhat robust items, but they are not really designed to make sudden stops upon hitting the floor.

Amongst the items I was retrieving was five dollars to give to the activities director, who usually makes a shopping trip for residents who are requesting certain items. The other thing that I was trying to retrieve was a dime to give to the bookkeeper.

Toward the end of October the bookkeeper approached me and indicated that the previous nursing home I had been to still feels they need to be paid six cents. Six cents!! that alone shows me what money grubber those folks were. They know that all of my worldly possessions have been dispersed due to Medicaid rules, and they are grasping for six cents?! I have been told by family members that the former nursing home has contacted them trying to get $7000 they think that I owe them. They are trying to get it from my brother or my father!

That nursing home made some sort of arrangement with the bookkeeper that they would retrieve their six cents after I had paid my next installment at this facility. So she indicated to me that if I didn't mind they would refrain from going into my bank account for the next month so that some buffer could be built and then they would retrieve both months in December. I was not pleased with this arrangement for a couple reasons. One, I had not been involved in the negotiations for this arrangement, but I was merely being told that somebody else had made this arrangement. Two, the other facility has shown themselves to be less than honorable on several occasions, which they don't seem to accept but rather look for other people to hang this problem on. After they decided I was not someone they wanted to keep in their facility (i.e. they could not squeeze any more money out of me) they finally arranged to have me transferred to this place. I find very little reason to trust these people. I do not like being made available for them to mistreat me one more time, yet again.

I have been haunting my bank account regularly to see if indeed this arranged payment has been affected as it was set up. Nothing has changed in over six weeks, and there is already has been the second installment deposited into my bank account. Yesterday I intended to give the bookkeeper a dime so that she could give the six cents to the other facility and we could be done with it. When I tried to do this she became very dismissive towards me and indicated that she could not do that, they had rules to follow. They may have rules but they have no sense of propriety, no sense about how to treat their residents. And this is not the first time I've dealt with this bookkeeper. She has the unnerving ability to talk like a young child in the way she pronounces words, and her choice of words is always very haughty and dismissive. I do not tolerate this kind of treatment very well. So already I was in a not good mood as I returned to my room for lunch.

I know not to expect any better from the kitchen staff, but lunch did not improve my attitude at all. Ever since the kitchen crew had been replaced by a different organization the quality of food here has changed quite a bit, in only very few cases for the better. Previously the meat here was all mystery meat. That is it was ground-up and formed into various shapes depending on what the meal was to be. The same type of meat was used for hamburgers, pressed into round patties, meatballs formed into round spheres, riblets, formed into faux rib bones and connective muscle tissue - much like McDonald's does. The only thing that made these various meat dishes different from one another was the kind of sauce that was drizzled over each entrée. Fine cooking technique at its best.

Yesterday, I was grumbling to the woman who was taking over the receptionist spot during her lunch hour, a rather large rotund woman who obviously likes her meals. I indicated it ever since the kitchen staff had changed affiliations that we no longer were served eggs in the morning that were prepared over easy. When they had a big meeting to inform us of this new kitchen regime several of us asked why the change in egg style, as we enjoyed our eggs this way. We were told that it was a state law, because it's easy to get food poisoning from undercooked eggs. This brings up two questions. Since bacteria are killed at 160°, and this is not enough to cook an egg yolk all the way into a hard state. Does this kitchen staff not have the equipment and/or ability to judge when 1 60° has been reached? Why, if people are so concerned about bacteria inside of an egg shell that was formed inside of the bird, obviously the bird must be sick or damaged before the egg was formed. Why is the state that looking to the egg producers for this supposed problem instead of harassing the public about their preferred eating style? Of course both answers were dismissed as ridiculous, as those in charge of the kitchen took the stance that is often taken here toward the residents. That is we know better, were in charge, will take care of you, now just run along and let us do our job.

No fried eggs are presented unless in this overcooked state. Not only that, but whatever product they use to cook the eggs in to keep them from sticking to the cooking surface is a low quality oil that one gets sick of day after day. This makes it hard to eat the same politically correct eggs every day. This morning as the plate rested on my chest, it was not perfectly flat. While I was setting up my breakfast to eat, a slow stream of clear yellow fluid slowly oozed from beneath the eggs toward the low spot on my plate. I suddenly lost all interest in eating fried eggs this morning. I found myself missing greatly cooking in my own kitchen. It seems like a cruel fate to lose my ability to stand and walk, for this get to be treated as less than human, and the food is bad too.

This lends itself to another problem that I've had here. It is the wholesale reduction of anyone (read residents) to a very diminished intellectual state. Something which I find be thoroughly disgusting. I come from a long background based upon Maslow and the hierarchy of needs. There is more to people than just food, clothing and shelter, and being able to string plastic beads twice a week or play bingo does not account for enough beyond the food-clothing- shelter scenario. And yet I find that most of the upper administration here tends to believe this way and act this way toward all of the residents. I have mentioned this to a few people in that category and they don't seem to understand. In fact they almost take offense that anybody would find umbrage with the way they are treated.

I have been in nursing care for more than two years now, in two different organizations, nearly eleven months in this facility. It is one thing that this disease has taken my ability to stand or walk, even to wipe my ass after a bowel movement. But there is no reason on earth that my very humanity should be messed with. I find that the fact that many of the people here, and certainly the administration should fail to understand this is a great indictment on these people and the culture that allows this to exist or continue unchecked. Why should I be the one that has to constantly remind them that this is not the way to treat people? There are studies, for those who can't somehow manage to find this for themselves, that show time and again that when you consistently treat people this way it shortens lifespans and lengthens the time needed to heal from bodily wounds. So why is it that I'm here? Is it to earn disapproval from many in the administration and some CENAs because I know better and refuse to succumb to their uninformed treatment of residents? These may be the last years of my life. Do they really think that under these conditions is any way to spend them? Do they even think at all?