Sunday, February 23, 2014

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


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.


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.


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.


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