14 August 2014

Thursday

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

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

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

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

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

Big silence followed that query/statement.

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

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

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

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

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

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

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

13 August 2014

Wednesday

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

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

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

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

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

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

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

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

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

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

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

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

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