Sunday, August 18, 2013

13 August 2013
This was written a week ago
I have been scheduled right up top, lately

Things are beginning to look better

Friday, as I was sitting in the lobby, in my wheelchair - wistfully looking out through the glass front doors at the fleeting season of summer (from inside of a facility designed to keep people indoors), I saw a resident (a short termer, rehab resident using a walker exit the elevator and walk directly to the front door, nod to the woman at the desk, who buzzed the lock open for him. He walked right through the door, just as I have seen he and many others do before.

The thought suddenly hit me – why do some residents here have permission to leave the building unescorted whenever they wish while the rest of us longterm residents are preempted from such small forays outdoors to experience a bit of actual weather first hand. Admittedly the woman behind the desk was not the usual denizen who occupies that position (that woman is on vacation), the woman behind the desk this particular day was filling in. It was the manner in which that temporary fill in (a regular employee here) chose to inform me of an answer to my politely presented question. In a voice that I have heard her use almost always whenever I have had contact with her, she said in a tone that to most people comes across as extremely chidlike, babyish almost, carries a tone that implies one's self preciousness and at the same time carries a message of arrogance, “Well, some people have permission from the nurse on their floor that they can go out.”

That extremely un adult, self pretentious, bit of non information delivered in such an unappealing manner, only brought on more queries. “I've been hear for six months, and I still cannot leave the building even to sit just outside the front door, except when some staff member escorts us outside in a group, which is when it fits their schedule, and maybe if they don't have too much paperwork to do. When do I get permission to go outside on my own recognizance?”

The woman acting as temporary warden responded in her best prissy sounding voice as if even having to have the words pass through her mouth were so hot and spicy that she couldn't move them along fast enough. “We are responsible for you here, you might go somewhere, we don't know what you are capable of, you might tip over out of your wheelchair. You could lie on the ground for hours and no one would know to get you up.”

I smiled at her sweetly (for that is all I was sure she could understand) and patiently explained that if she truly expected me to buy into that load of crap, she wasn't carrying her thought process out to far.

  1. If she believes that people willingly position themselves to hit the ground rather than stay in their wheelchair, she has probably never used a wheelchair even for a few minutes. It is damned difficult to “fall out of a wheelchair”, especially when one has MS which makes gravity a very powerful method of staying put in a wheelchair. You should see the work and machinery neccesary to extract me from the wheelchair when I want to get out. You obviously have no idea what you are talking about – sweetheart!
  2. I have nowhere to go. I may have grown up in this town, but that was more than forty-five years ago, on the other end of the city, I am not familiar with this end of town, I do not know the local area. I no longer have a home - anywhere, where would I go? The last time I drove a car it was equipped with hand controls, and I am not even allowed to even own that any more, let alone drive it. Besides how would I get into it to make this fictitious escape that you are concerned about?
  3. Assuming that my falling and my escaping are not the issue, why do you and for the most part a lot of the interactions I have in this facility predicated on the idea that I am an object and not a person? I appreciate the concern for my health and safety, but at what cost? Where is the line between handling me as something to be warehoused and a subjective individual with feelings, desires, hopes and dreams. Why is it that simple ways of interacting with nature are so difficult to attain around here? Are people/residents so unidimensional to the staff and employees here that that which makes us human is just ignored? Why do you insist on speaking to others in that insipid fashion? Do we mean that little to you? We are not dollies being played with here.

Realizing that my line of thought would challenge her even more, I decided to leave her sitting on her pillow, behind the desk, just as sanctimonious as before. I retreated up the elevator (surprisingly I can manage to manipulate that piece of heavy machinery okay – and surprisingly I didn't require any training for that) if we still used those older style elevators like when I was a kid, that required an operator with her hand lever that would be slid backward and for ward to make the car go up or down, we probably would not be allowed on the elevator unescorted for fear that we might get the car stuck between floors or something dire like that.
I remember that handle had its own patina from being run up and down those tall buildings all day. It has always amazed me that while technology never seems to hold still and is always improving in some way or another. Some products never seem to be the beneficiaries of being up graded as elevators have – like wheelchairs. They still are an amalgam of a chair and some wheels, hasn't changed in its basic operation in over a hundred years. And gravity has a consistancy that makes staying in one just too easy.

I did find the nurse upstairs and put my question to him. He said that he wondered why I had never been cleared to exit the building. He said that I have never been a problem, I am probably the resident with the most cognitive ability, I certainly appear to work with the program here more than most, and where would I go if allowed outside? He said that he would put it to the doctor when he came in next time.

I wasn't feeling too hopeful, there is a doctor assigned to my case (this always seemed very strange to me, that a doctor would be “assigned” to my case – they we go again. I am a case to which a doctor has been assigned as if I was just a sack of symptoms. I remember when I first got here a fellow came to my bedside, asked some questions in rapid fire mode, I suppose that was the doctor assigned to “my case” and thus to me. As I recall the questions seed to revolve around issues I had with pain. I suppose that I am lucky, some folks with MS do have pain, unremitting constant pain. Many times this is referent pain, that which is caused by a short circuit in the nerves themselves rather than a bodily injury like a stubbed toe or a bruise. No, no pain like that like an aspirin would touch or any other pharmaceuticals.

I remember quipping that I was just moved here very unceremoniously from another nursing facility, that was very painful, they had a rigid schedule to which every incident was mapped out, everyone was marched through the day like machine parts. The whole outfit was a pain in the ass. I would tell them about how hurtful that was but they always said there was nothing they could do, rules, the system, or State law.

These are very clever people, they have learned to identify the problem as belonging to those other people, over there, its them that are the cause for your misery, because of that, what they have done. What these folks don't see as a result to their way of”naming” the problem, is that their mind has become caught up in the naming mode, which uses the divisiveness of separation, deflecting causation away from them and directs everyone away from the stated experience of what is happening right now. Once the mind has shifted to this mode it becomes easier to hear but not feel the pain going on all around them, easier to separate ones self from the pain of others so as to not feel it yourself. This eventually becomes a self defensive measure. Some people call it going “clinical”, giving name or reason for what someone has tried to tell you they are experiencing.

In response the doctor said that wasn't his problem. He wanted to know if I had any problems with pain now. Hmmm that depends on how I get treated while here. Right now no pain, but my stay here is still young yet. Then I indicated that I don't do well with being reduced to the lowest common denominator, or being warehoused. He said, “You are going to love it here”. So this is the assigned doctor, eh … this could be interesting.

As luck would have it, when the nurse reached the doctor he signed the release and stipulated that I could sign myself out at any time. Thats it? That is all there was to it? For six months I have been wasting away in doors, watching wistfully out of the glass front windows and doors, positioning myself to get the merest of whiff of the outdoor smell when visitors entered, and that was all I had to do? Damn! Why didn't anybody tell me? Yes there is some cursory admission that to having some access to the outdoors is healthful. But many of the staff here echo the residents, the weather is too this and to that. So many people want the weather to be as climate controlled as their life indoors, right where they set the thermostat. Many folks don't like the breeze to blow or the sun to beat down so hot, it's too humid, there's too many bugs, too many bees, too much …. drone on and on, blah blah &c.

People, its the outdoors, its changeable and unpredictable like that. Half of the enjoyment is exploring the range of possibilities. And when you do, really notice the way it feels, in a body sense, not what your cackling mind has to say about it. That mind will say anything just to be saying some thing, that is the nature of that mind. It doesn't care if its right or wrong, it has to have its say. And if you choose to follow it and believe as it says, then you have not been paying attention. You have just allowed yourself to be hijacked by the always talking mind.

The first time I got in the wheelchair and tried out the release on self recognizance trick, the nurse saw me coming and begin looking for the form for me to sign. When I got to her she was really worried as she couldn't find it. She fussed and fumed, she got more upset at not being able to find it. I said just take the back of any sheet of paper, write on it the date and a place for my signature, when I come back in I'll sign it again where we mark that I have returned.

I rolled to the elevator and managed quite well getting down to the first floor. Amazingly nothing drastic happened. The doors opened onto the lobby where the usual crowd that goes out under guard watchful eye was gathering for lunch on the first floor. I worried about going out on my own in front of them. Just then the woman behind the desk (yet another, different one this time) had just received a call from the upstairs nursing station indicating that it was okay for me to go out. She called out to me loud enough for everybody to hear that she just got clearance and that she had just unlocked the door, all I had to do was push the button. No quietly slipping out the door now, I'd been made in front of everyone. Better to move swiftly and quietly. As I strike the metal button with the handicap symbol on it a chorus rises up behind me of very similar cries, “Why does he get to go out? When can I go out too? I wanna go out! Wait for me!

The calls fade behind me as the door closes. I move so I won't be in line of sight through the glass door. And thus rubbing the noses of the other respective remaining captives. The air outside is somewhat cooler and definitely less humid than the air inside, less stuffy. A slight breeze rises up and slips over my skin as if welcoming me to the outside. There is such a feeling rising up from within me of release. I have been held back for so long. Everyone is concerned about my health but only in a physical sense. No one seems to value the emotional health, if act to most people the word emotional conjures up images of weakness and sloppy untidy situations. Again that is only one end of the spectrum. People act as if one part suffices for the whole. Just like not wanting to go out because …. listed above. Don't limit yourselves people, find the whole range of experiences. And whatever you do don't limit me because you are more comfortable keep your world too tight. I'm not you. I don't subscribe to your fears. Do you know how silly you look telling me that I can't do something because you've never tried it.

Some of the CENAs who have worked here before have said that there was once a consideration raised about building a solarium or some such place where residents can go that would be more self contained and yet like being outdoors. Great start, but it was shot down – too expensive. I can see it on some tombstones now, “Died from desperation to be outdoors again, couldn't go. Too expensive.” When are we going to stop equating quality of life with a dollar amount? I al3ways thought that Priceless meant without a monetary value. So why are some people saying something can't be done due to financing?

I have enjoyed many trips outside on my own since then. As a true introvert I deeply relish these opportunities. I hear the birds, the light wind rustling the leaves, I hear the space behind sounds. I notice, as one CENA informed me, she likes the way that I see and notice that which others often fail to recognize.

It is a small step, but for me a big one.

Some of the residents out getting some fresh air

Another view, mostly not getting too much sun
View facing the building, from under the canopy

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