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.