Friday, November 8, 2013

8 November 2013
Friday evening

All this and asking as well
Contrary to what appears to be believed - I'm not dead yet

Well, it's been an interesting week. There been some exciting moments and some things that have happened that one would not have expected. For example, as you may know, Friday is one of my shower days. A moment that I look forward to as it only comes around two times a week (the shower, not Fridays). And one never knows when one of those times might be superseded by someone else's more important construct or situation. Like the time I was nearly in my wheelchair, literally halfway from the bed to the chair, when a CENA popped her head in the room and announced that suddenly all showers are off as of now.

Why? It seems that when someone from "corporate" arrives on surprise basis to tour the facility. The word is that such demanding chores as helping residents get their carcass cleaned is too demanding of the CENA staff. They need to be out on the floor where they can be visible attending to residents, not hidden away in the shower room dealing with only one person at a time - it just doesn't look good. So my shower was canceled so that we could make a nice impression for some fat guy from out of town. This is not sour grapes speaking. I saw the guy. He literally looks like he could be a double for Norm on the old show Cheers.

Only problem was, I couldn't generate much positive feeling for the man. His general overweight condition did nothing to help my assessment. The lack of any form of neck whatsoever and the fact that his belt was straining mightily against the overwhelming onslaught from his belly region reminded me of too many other people that I've known who exhibits the same physique and yet also project thoroughly self-serving personality. Somehow that self-serving personality aspect matched up perfectly with the fact that my one of two showers per week and been canceled, just so he could be served a false image of how wonderfully busy everyone was.

Today's shower was much more efficient, the CENA helped me remove the leads from a 24-hour heart monitor that I'd been wearing since the day before. Then we proceeded to the shower. Everything went smoothly and I was set up in the shower. Since I have shown proficiency with being able to do most everything by myself, the CENA is free to leave me for a while to attend to other chores. Things like stripping my bed for new linen, getting things that we had forgotten from my room, like clean pair of socks, and on such things.

I noted while the water was running waiting for the pipes to heat up as the water traveled from the water heater to where I was using it, the sound of the water hitting the floor beneath me did not have his usual splatter of drops of water hitting the tiles. It didn't take me long to realize that the sound of water dripping into a gathering puddle of water indicate that it may be the shower drain was running a little slow. Slow enough that the input from the showerhead was overtaking it. I proceeded to soap up and scrub, processing the shampoo through my hair when I began to notice that the water was growing deeper. The water dripping off my seat onto the area beneath me wasn't hitting the tile floor, but rather was adding to the mix of the growing puddle beneath me. I then realized that the water was starting to raise to the area my feet were. The floor of the shower slopes slightly upward to imaginary line bisecting the shower area from the rest of the shower room. The water on the shower stall side of line flows toward the drain any water that flows in the other side of this mentoring line flows out into the larger room itself.

It didn't take me long to realize that if I took my time and delighted in the shower (which is one of the few joys attendent to taking a shower) the slow drain would cause the water to eventually flood the shower room, and as there was no drain in that floor, it would seep under the door out in the hallway. I had no control over what might get into that water in the hallway. Along the far side of the wall was a baseboard heater. I had no idea was electrically run or hot water based. Suddenly the image of some stray source of electricity meeting up with my growing puddle frightened me quite a bit. I proceeded to finish my shower as quickly as possible and turn off the water. I did get clean, although the parts that would normally wait for the CENA to come back and finish for me the parts I cannot reach did not get scrubbed. Somehow that seemed like small enough issue under these conditions.

I was beginning to wonder if my shower might turn into this ?

Or this?

Or some rollers like this ?

What if sand dunes began to form?

Or if exotic livestock appeared?

I managed to finish everything and turn the water off and I noted that slowly the water was lowering in my shower stall. So the drain was not completely stopped up, just running slow. I didn't have any access to a towel at this point but did have two wash clothes provided for me, I had only used one. Realizing that it might take a while to shiver dry, and not wanting to do that, I took the dry washcloth and used it as a miniature towel to at least get most of the water off the surface of me so I would not be losing heat so fast.

The emergency call light cord was just about out of reach. I suppose if it was a real emergency, and I was conscious, I may be able to expend a lot of effort and energy to reach the call light to pull cord, but under these conditions I thought why would I do that? I was clean, I was safe, there had been somewhat of an adventure, but pulling the panic button now would not be of any real service. I could afford to wait.

Not long and I could hear the CENA pressing the lock key code into the door lock from outside, meanwhile exclaiming in a loud voice, "Hey there is water out here, what you doing in there?" As the door opened I could hear by her exclamation that most of the shower room floor was still underwater. Also, the water had been seeping outside the room under the door and was starting to run down the hallway. Suddenly the first chore that needed attention was to grab as many towels as possible so as to throw them on the floor and sop up the water. Problem was that towels are not always stocked in the shower room every day. Or if the stocking had been done it was early enough that most of them had been used by now.

She quickly ran to the linen closet for more towels. She was gone quite some time before she came back, explaining that she had to go down to the second floor and then finally to the laundry room to find more extra large bath sheet type towels. She explained that the woman in the laundry, when she found out why they were being sought so quickly, said so that's why they had so many yesterday. She mentioned that the plastic bag used to collect soiled towels to take them to the laundry, was so heavy that she could hardly lift it.

This is a major clue. Are you paying attention? This clue tells us that yesterday there had been some major water on the floor event that many large towels had also been used to sop it up, and they had made there way to the laundry for processing. Knowing how communication is the first thing to suffer around here, it is an easy stretch to imagine that possibly this drain was running slow yesterday and caused a backup when the towels gave away the situation. Now as we chase this down the inevitable maintenance man, who will get the chore, to see if he has heard of this before. An amazed comment and a negative response will let us know that whoever was overseeing this fiasco previously did not think that it was valuable enough to let anybody know so that would not happen again. It occurs to me that anyone would continue to allow something like this to happen without doing anything to stop it is a candidate for the dumb shit-of-the-week award.

I just can't get over the fact that what seems obvious to me, should seem not so obvious to those who work here, and then I just blown away as to how many times I see this sort of thing not followed up appropriately. There is some CENAs with whom I share my observations about events like this, and they too have a difficult time picturing how some people, who happen to be their peers, fail so miserably in following through on something like this.

I did eventually get dressed, inspected by the nurse to see if my various wounds are healing, set my chair and released upon the facility. The CENA did an excellent job attending to my shower as well as the unexpected facility cleanup. Needless to say, her lunch break was following this episode, and she was eager to go and relax.

Meanwhile, my father's wife was due to come for a visit and bring a nice salad for lunch. I went downstairs, visited with a few people that I normally find down there and made myself ready for my visit - and lunch!

Earlier in the week my father had come to visit. Prior to his arrival I had written a note to his wife, asking if she wouldn't please use her magic to nudge him into completing an errand that he has promised to complete for many times over the last few months that I have been here. This was to bring a couple of my favorite photographs that were saved from my home so that I can hang them here. I had already found from the building manager that would be okay to do and that he would be more than willing to help me. I found out today that my father's wife had gently reminded him by getting my photographs out of wherever he had put them away and put them in large garbage bags, then placed them in the hallway where he had no chance but to see them as he went toward car. Then she made sure to ask if he was going to have any problem carrying them into the car and into building once he got here. He assured her that he could do it and indeed he did. As luck would have it I ran into the same building manager the day after Dad was here with my pictures and he put one of them up on the wall which is at the foot in my bed, where I can lie and look at it with no effort at all. We talked about this over lunch and I told her I was very glad that I written and that she had made the effort to "nudge" dear father in this direction.

It's not much, at least compared to all the other photographs I've done, many of which my younger brother thoughtlessly gave away as he was closing my house, because he didn't want to deal with them at all. I don't know how these were saved, they are couple of my favorites. Now as I take a moment throughout the day and gaze at that photograph opposite me, the memories and thoughts that arise just as a result of seeing that particular photograph are more numerous than most memories I have been entertaining in the months that I have been here.

I have noted that most people treat me as if I'm already dead and gone. That's one of the strange things about long-term illness or disability in this country. It's well known that most of your former friends suddenly are finding themselves "too busy" to take the time to stop and see you, or even write, or call. I would imagine this is about the closest thing to dying without actually leaving the planet. There are few people who come by, even fewer who come by regularly. Many who came by once, have somehow found reason not to be able to come by again. I can't tell you how much this hurts. It's a strange condition to be just as live as you once were but now nearly everything that you used to know is gone. House, savings, investments, the money set aside for retirement, car, friends, nearly all of your possessions, many of those little knickknacks that really did that amount to much, but they were saved because for some silly reason they meant a lot to you.

There are certain things that mean a lot to me. I'm very visual, I had a lot of photographs. Not just snapshots in a shoebox in a closet somewhere, but I had noticed there were things that really attracted me and so I strove to get good representations, well presented, often well framed and hung up on the walls where I could admire them. These gave me inspiration often.
A print ad destined for a magazine cleverly showing the strengths of each hemisphere
catches your attention doesn't it? 
To have a family member, whom you thought would have known you better than they showed they could handle, inform you that you had too much "junk" and that their method of dealing with it for you, at your request, was to throw it out in a dumpster or give it away. That did feel and still feels like having my heart ripped out of me while it's still beating. I wasn't ready to find myself so separated from the things that meant much to me. Little things used to mean a lot to me like, I had printed out once the words to George Harrison's My Guitar Gently Weeps and had them on my refrigerator, held with glass magnets that I had made in my own stained glass studio in the basement. Granted it was just a piece of paper with some ink on it, but I always got a little misty eyed every time I passed that song and read even just one or two lines from the whole thing. That's why it was there. There are the things too, some of which were not even considered. The Grateful Dead song ripple always gives me pause. I cannot hear that on the radio, on one of my iPods, anywhere without the world slowing down in my view expanding infinitely in all directions. Many things that I had collected had this kind of impact on me. How anyone could not see that, not understand, not even try is beyond me.

So the recovery of two of these photographs has done a great deal to encourage my attitude in the months that I've been here. I know that this is basically a rehab facility, people are here for a short while and then move on, usually somewhere else often to a place that they call home. I heard this social worker earlier today talking to a woman about how she's going home to her place over the weekend, and that they're going to coordinate with another agency to make sure that she's being checked on regularly as she acclimates to being in her own home, again. I'm happy for her. And yet hearing those words from around the corner and down the hall, I could not help but think to myself I don't have a home anymore. Everything that I used to have is gone. This is my home now, and I may live another 20 years. I realize after having that missed photograph of mine recovered and hung up on my wall, how much we gain from our surroundings. And if you can decorate a place to your own liking that will sustain you. And I'm here to tell you living in an institutional setting quickly overruns its newness and there is not much to sustain one. Unles you strain to attain the sanitized effect of institutional living.
Grab shot of Photograph recovered
Made over thirty years ago

View of photograph as seen from bed in perspective with the rest of the wall
There is a lot more empty space to fill
Some other photographs needing framing can be seen on table next to television

To some degree I am lucky. I have managed to make myself noxious enough to get some of my family members to regain some of the things that used to belong to me in my own home. For example, in a box over by the entryway to my bathroom (which I am unable to use) in a box full of many knickknacks are all four of my college diplomas. It was fortuitous that those do not get thrown out with some of the other things that I'm missing. They are in good shape and something I have always wanted to do with them when I was at home, but never got a chance to, may come to fruition now. I always wanted to frame all four of them and hang them together. Now these show my acedemic achievement, but it also shows that if you stick to it you can get to the end. Granted this is not exactly the end I envisioned - but it's the one I have available, now. And I would like to get those framed. The building maintenance manager has even said that I can frame them and hang them on the wall in the space above the door transom visible in the picture I'm going to include. I have a packet of the 3M Command product to hang them. All I need now is to get them framed.

Therein is the problem. Due to Medicaid's draconian requirement that people in my position covered by them on nothing of value more than $2000. I did have some of that money but has drained away. So I invite you to do something bold and adventurous. I have begun a PayPal account. As you may know, if you've ever used PayPal, it is a way to send money to someone all you need is their email address. Since Medicaid does allow people to give small gifts or things in kind, this in no way stretches anybody's rools . I'm going to put it out there and ask anyone who would like to to donate any sum that they feel comfortable with through my PayPal account. I am going to try and get enough funding to purchase framing for my diplomas so they can be hung up and appreciated. Just knowing they're there in the box is one thing. It will be quite another to see them protected and displayed proudly for one in all to acknowledge. Seeing them displayed like that will be of tremendous boost to my sense of attitude and who I am. The next step will be to find somebody who will be willing to take them to and from the framing store so that this can be accomplished.

I imagine most facilities like this one have the right intent at heart. However, the journey from at heart to being completely accomplished often causes a huge diminuation in the original intent. I'm saddened to find out how many people are willing to put up with such losses. That attitude never served me well at all. It is half the reason how I got behind getting so many Degrees in the first place. I do not wish to succumb to the general attitude of so many around here just to get along. I'm looking at too many years of having to lose myself in such a gradual, diminished fashion. If people are not familiar with how PayPal works, go to, they have an excellent set of webpages instructing on how this works. My email address is

This feels awkward, but under these conditions, I am no longer allowed to work and am scrambling to find some way to put my talents to use. If I factor it out there is nothing wrong with asking for help, and the results to be gained by feeling a part of a community. That will go along way in these conditions where the community is so conditional, and so antithetical to what I used to be. I am not used to quantifying what I do against some economic scale and then deciding that it cannot be done because it's too costly. There is more to interacting with people than the economics of pecuniary materialism. I'm looking at too many good years to live like somebody else that is so foreign to me. Asking is hard, somehow we tend to believe that it belittles us. It doesn't. It is an honest act brought right out into the open. I have paid for nearly everything I wanted. It was my nature and how I was raised. Asking for something and getting it some seemed as if I had done something slimy and socially improper. But now I am existing under certain rules that preclude me from earning anything, or I run afoul of those rules and those earning can and will be taken from me. Suddenly the very thing that was that the at the core of my being is now not to be done. If I play the game according to these strange rules I might as well be amoung the unburied dead whom Medicaid creates and encourages. I am free to involve myself in hobbies, thing I have done before, but as you may recall, most of my equipment, tools and work equipment has so thoughtlessly been disposed of by my younger brother. Most of my camera equipment, stained glass tools, books are all gone now. The only thing I have left is a chance at a clean start and the inability to earn my way to the new beginning. I'm not ready to live a life that seems to be straight out of the Twilight Zone.
Strangeness may be closer than it appears

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