Wednesday, August 28, 2013

28 August 2013

Well, today is the 28th, the day my phone bill is due. If it is not paid today the amount is increased by a late fee almost equal to the bill itself. My long term income from a family trust fund has been withdrawn. You see it's not mine, I receive a portion as a gift at this point. I have been the beneficiary of this gift for several years now. Suddenly this gift has been diverted. The portion I have been given has been sent elsewhere. I'm am not sure why, no one has ever spoken to me about this. I have my suspicions as to why, it has to dowith my youngest brother, who has earned the nickname William Wormtongue. No one is saying any thing on that point as well. Meanwhile as my possessions have slowly been taken from me gradually, I am left with less and less. This cell phone is just about the last thing I have left. Oh sure technically I don't need a phone, living under such close scrutiny and care (B.S.). But there are those occasions that occur more often than they should, when I have a huge headache and I ring for the CENA to request a pair of Excedrin. And over an hour goes by and no CENA comes by, or even if/when the CENA arrives, gets the message and the nurse takes more than an hour to bring the medication. Usually someone is busy or they forgot to followthrough. That's fine, but I don't want to be pain ridden for too long due to someone else's difficulties. That is when I use my cell phone. I call the main number to the facility. At night the second and third floor nursing desks alternate answering the phone. When my call is answered, usually quite quickly too, I ask for the third floor nursing station, when I get there I identify myself and state that I did request some Excedrin an hour or more ago.

The other day after using the adult sized Potty chair in my room and having been put back in bed, I realized after both of the CENAs left the room that my call light had been left hooked to the commode, out of reach. There was no way I could wiggle or stretch enough to get that call signal. I used my phone to call the front nurses desk to indicate that I needed to have that light put back within reach. Otherwise when I had fallen asleep even if the night shift did come in, rare sometimes, they might never have seen my call light fixed out of reach and thus unavailable. I do use the phone for outside calls, darn few of them sometimes. I have so many rollover minutes from unused time that I have paid for that I doubt the phone company will not be too worried about me running up a large bill. But part of the phone bill is paying off the phone itself.

I have always prided myself in playing the game by the rules, that includes paying the bill on time. Now the funding that I have always been able to count on eventually to even pay the phone bill has been redirected. Each brother now gets half of what I used to get. One brother, William Wormtongue uses words to confound and confuse people, for which he always seems to benefit, when I told him that I understand he is receiving half of the funding that I formerly received, could I please have some? He indicated that it came in a check with his name on it so as far as he is concerned its his money. As such he spent it all, there is none to give.

My other brother said that he would get the half to me, but we have been whittling down the best way to get that done.

Meanwhile the phone bill has been drawing closer. I told my father that now that the funding has been diverted away from me, the help he has offered to help me with, is now needed, the phone bill, its tendency to double when late was discussed. Like a trooper he stepped right up and told me to give him the bill, he would take care of it.

Dad, they don't give bills out through the mail any more. It is expensive to do that and they are trying to get away from that. They send me an electronic notice of the billing and I in return authorize them to withdraw an amount from my bank account equal to the bill. EXCEPT THAT I HAVE ONLY SEVENTEEN DOLLARS IN MY ACCOUNT. The input has been cut off. Remember?

Next week I remind him again that the phone bill is a week closer to being due. He asks me if I. heard about the new alternator the Beemer needed, $2000. Yes, I heard about that last week. Do you recall that my phone bill is due? Yes, Just send me the bill. Dad, we went through this last week, there is no bill to give you. Alright I'll stop by the bank, not tomorrow, the next day. Later I check my account, no change. This last Saturday he stops in for a visit, unannounced as usual. He appeared at my door, I invited him in. How are you doing? A huge headache, since this morning.

[Long pause] Did you get some money into my account? There was some answer about not having enough time or the car didn't work or something to serve as an excuse. Mostly what I got was “No” and fetching for some story to buy me off for the moment. More than two weeks of me bringing this to his attention and still yet no movement. I went through the drill again as I wasn't sure he was really understanding the situation. We spoke of other things and then he announced that he had to go, his need for a nap was coming on. Maybe that was the problem, maybe his napping reorganized his memory and after the nap he had no recollection of the earlier part of the day. He said I'll see you tomorrow and left. Tomorrow? He never comes two days in a row. Tomorrow …?

I semi waited all day Sunday. Not a shadow nor a peep. I figured yesterdays comment was a misspeak. During sunday I made a screen image of my bill and some discussion about what the various parts were signifying and what they meant. How to read the bill and how I authorize payment. Then I indicated that I had opened up a PayPal account to make it as easy as possible for anybody to send money to me without having to go to the bank. I sent the PayPal URL and encouraged him to look into the entire site to become familiar with it. Now my father is not very adept at using the computer. Mostly he barely gets it turned on. His wife opened an email account for her and one for him. He never uses his so most transmissions to him go by way of her. Lately it doesn't matter if I address my posts to him or both of them he never mentions them. I hate to think the she may be filtering his mail, but he just isn't responding the way he used to.

So today my phone bill came due, the money has all been withdrawn from coming my way for three quarters now, I have had no income since January, my account is now the lowest since I was twelve yars old, my brother from out of town did send some money but it has to sit in PayPal's possession for a couple of days before it becomes accessible to me.

My youngest brother hasn't seen me since early May, when he came with my father. He has called two times, two weeks ago and a month before that. Each call he does not think enough to leave a message. The call on the 24th of July I called him back two days later and asked what was up, he had called? He said that he wanted to see how I was doing? That was the last mention or query about me. The entire rest of the phone call was about him, what he was doing, the war he was having with his neighbor about the fence between them, about his efforts to get a permit from the city to erect a new fence. How strange another neighbor has been acting, blah blah blah.

I figure that as far as my local family is concerned, I'm already dead. My brother has manipulated and maneuvered everyone so that he is always the beneficiary. He was put into position of Power of Attorney for the purposes of selling my house. Then when my father is out of town, he reverses and does not do any of the acts we decided to do about my house. He called me at the first nursing home and told me that I had a lot of “junk”. Then proceeded to throwout a lot of it in a dumpster that was dropped in my driveway. Then he felt that he didn't want to carry the rest to a rental locker so he had a bright idea, he was going to call his friend the auctioneer, who had a truck, and he would take everything away for free. I kept trying to tell him NO that some things were irreplaceable others I wanted to gift to friends.he kept raising his voice and talking fast so he wouldn't have to hear me.

So in most senses I am now dead. I have a heartbeat but I have no voluntary controll of most of my body, I spend most of my time supine or in a wheelchair. My intellect and sensory systems are not impacted, but many people don't know what to think. I get the impression that my brother has been interpreting this for others to his own benefit. I have given him the benefit of the doubt for far too long, I have been ripped off, stolen from and misrepresented. He is poison to be around. He is not worth having around and has no intention of making this right, but can only see continuing in the same fashion that he has been doing for the last 35 years. My father seems to be reaching the point in his disease process where he is no longer up to understanding things enough to make up his own mind. The ability to follow through clearly does not seem to show forth any more. Any time he shows up will be just a visit. I don't think the will or capability to do any more seems to have passed.

As far as any body else is concerned I don't need anything else, I'm being taken care of just fine – – at the lowest common denominator, the best care that any warehouse could offer.

It seems that no one has any feeling in the matter. They just go through the elements of their day. The social worker says in a very chipper manner that he would like to talk with me sometime, says he thinks it would be interesting. Between meetings, sometime, although he doesn’t know when ….

I guess I'm on my own. Its strange when you are on your own, and every one is in a hurry to nowhere, and people think they want to be with you, to understand, to aid and comfort. But they just can't meet you, where you are. They think they are being with you. They are where they “think” you are, which is often very faraway.

As usual I don't think many people regularly read this. I check the blog records to see how much it is accessed. Doesn't matter. I write mostly as an exercise to let go, to not have to always carry the load. While sometime this may sound like a sad exercise, which it is, I am also relieved of always having to re explain to another. This just makes me boring to be around. I don't want that to happen.

 I'm feeling much better now.

26 August 2013

How can I make Myself any Clearer?

One thing I have noticed, and has been demonstrated to me since the days when I used to do Rehab work (more than a decade and a half ago), is that if someone has a visible disability, the non-disabled are sorely challenged as to how to deal with them. If someone visibly looks different, that visual image releases all sorts of questions in those of normal ability. If people show motions that are different from the usual, I. e. various movement disorders due to injury or brain disorder. If you appear to not have any twisted, bent, broken body parts but you use a wheelchair, you end up in the same group. People are very good at spotting patterns and if you don't fit that pattern that is considered normal, people suddenly go all silly on you.

Personally I have had trained social workers swoop in on me, grab the handle bars on my wheelchair and announce,”Here, let me help you.” as they take over control of my chair and consequently me as well,to spin me around at a speed they feel comfortable with and zip me off to where they “think” I am going. Now wheelchairs are nice adaptive devices. They can be self controlled to move where and when I what to move to another place. But they are all not that comfortable. I have seen rows of wheelchairs parked in a line. Basically they are all of the same dimensions. And yet most of the people I have seen are not of similar dimensions. What do you suppose the odds are that any of those chairs are going to adequately fit the person selected to use that chair?

I have been in two facilities and have been assigned two separate wheelchairs. The one at the first facility fit pretty well, I could spend a long time in that chair before I got uncomfortable. In my present living arrangement the chair was assigned to me on what criteria I do not know. This present chair the seat to back angle is a 90 degree angle, which tends to keep me sitting at a bolt upright posture. The foot rests are not adjustable so my knees are at a similar angle and my feet are in one unadjustable position beneath my knees. I can tolerate just about three hours in this chair before my knees and lumbar begin to ache. The longer past the beginning of the positional aching the more of a toll it takes on me.

I have Multiple Sclerosis, the ways the disease works are similar for all MS patients, and yet everyone can have different symptoms. My last visit to the neurologist with whom I am treating was positive. In the last year the symptoms show little to no advancement in severity in the last year. Possibly the medication I am taking is holding the disease steady. I show no impairment on my cognitive ability. I have a little problem with disarthria. If I slow down I can form the word or since I have good vocabulary, I can easily find another suitable substitute word. I have some minimal difficulty if I move too fast or something in my visual field moves too quickly, I have a slight lag in my ability to make sense of where I am or what is happening. This is much like a small child becoming disoriented when spinning around in circles making themselves dizzy. It is about the same kind of temporary effect.

What amazes me is how many people, especially some family members, act like they are trying to humor me, and treat me like I have some kind of cognitive limitation. That is not my problem, it may be yours, but not mine. I really resent the arrogance, the haughtiness that this belief brings out in them toward me. If I speak up on this issue it only causes them to double down on their behavior and misunderstanding. They act even more as if I am cognitively challenged behaving as if my comments are even more proof of what they believe. This is a form of understanding that refuses to take in contrary information, and interprets it as proof of what they already believe. It is another demonstration of extreme lack of intelligence and mental rigidity.

Back to motive devices, granted there are different devices that are better at certain aspects of moving a semi-functioning body (more on that later), but the wheelchair is a good general all around mobility device to have available. They can be adjusted to fit your specific body more correctly, if designed this way. They can be possibly motor assisted to make distances and topological elevations easier to handle. But generally as one gets used to using their wheelchair for their short range mobility issues any unasked for help interference is an intrusion bordering on crossing one's boundaries. I try to be conscious of respecting the boundaries and wishes of others, in return I would like mine to be respected as well.

Such invasions can be as trespassing of one's personal space as your great aunt Eva pinching your cheek at a family get together and chortling about how she could remember when you were just a little fella. Chair users, disabled folks even, don't take kindly to that. It's demeaning. It shows a certain quality of assumption on the one hand and a certain kind of arrogance on the other. I know that people don't set out meaning to come across this way, but even if out of ignorance such acts hurt.

Speaking for myself, I have no problems hearing some one say, “I don't know what to say.” that is honest. I like honesty. Another honest line is, “I'd like to help you. I don't know what to do.” I like being helped, just ask me what you can do. I like being asked, it empowers me. I will appreciate you by leaps and bounds if you give me the credit for being more capable than I now am, and that you would like to help me. Now don't get all fake sincerity on me. I have worked with people most of my life, I will spot that faster than anything, I can see through that false quality like looking through a glass of water. Just be yourself, be authentic and don't worry if you don't know what to do. Its a being thing not a doing thing. There is nothing to do except to be.

This is actually the problem. Many people don't know how to Be, all they have experience with is doing things for which they are graded, judged, or approved. I am not here to do any of those things. I am at my best when I am allowed to just Be and I will afford the same courtesy to others.

Monday, August 26, 2013

25 August 2013

Such simple Pleasures

This morning, breakfast, lift the lid covering the main plate, slowly …. slowly now, steady drum roll to increase the tension of anticipation …... Ta da !!!!! “Breakfast revealed”, says the nameless faceless unknown announcer in my mind. The voice sounds like Don Amechee, or maybe Don Pardo, we'll never know. The round lid, looking much like some sort of flying saucer that landed on the plate beneath, was hiding the morning's surprise offering from the kitchen. The suspense was highly charged with cautious anticipation. What unexpected gift this morning, or which soul crushing repeat of dull fare would await the grand reveal?

The highest chance usually goes to the lifeless “scrambled eggs”, which are a grand misnomer perpetrated since before the second world war. This food product has had the life processed out of it since the shells were cracked away from the egg. Unlike the regular process of preparing eggs once they are released from the captivity of their ovoid shaped calcium capsules, if these eggs do not meet a hot surface waiting to change their molecular consistency into a form we have become familiar with on our breakfast plates. Instead they are beat and whipped to such a degree as to blend completely the yolk with the albumen to the point where one component cannot be determined from the other. This produces a food product ingredient that if cooked at this point could be scrambled eggs, quiche, or the base to crème brule´, but to finish the crème brulee, much more is added to reach the final product, including the crème.)

If indeed this nearly tasteless egg mixture is subject to a drying process, the result is dehydrates eggs, the bane of every egg lover and breakfast aficionado. Some cooks may like dehydrated eggs as an ingredient in some larger recipe. People who produce food in volume like dehydrated eggs because it makes their job easier. These people are not worried about taste or texture for two reasons. 1) They don't eat them, so they don't have to care. 2) They can get their job completed with much less time and effort, and they still don't care. Thus producers of food for large groups don't worry about the finer things like taste, mouthfeel, or what their clients are used to before the present setting. The standard commercial attitude fits well here, “If you don't like it, you will move on to another purveyor.” Except for one small detail, … some folks can't move on. Military personnel and long term residents of care facilities come to mind right off the top.

The scrambled eggs here in this facility are so very consistent, which is why a lot of people here accuse them of being dehydrated. They could pass, no doubt about it, although … I'm not so sure that is a mark that anyone would want to strive for. No self appreciating cook, that is.

Damn! Scrambled eggs, under the lid. Not a bit of cubed ham cut up and mixed in. Likewise no onion, green pepper or any spices to differentiate this breakfast plate from every other. Two slices of gluten free bread, toasted. And Twwwooooooo strips of bacon. This is big news. In the seven months that I have been here this has never happened. Bacon is on the menu, maybe twice a month as posted by the dayroom. It ends up on my plate about a third of those times. Which means I only see bacon once in two months. The interesting part of this particular Sunday's breakfast offering is that when those few times when bacon is actually on my plate, it is only one strip of bacon. I don't know if this is by design (bacon being somewhat expensive and all … Or if it is one of the commonly expected, but rather nasty choices that the kitchen pulls on me.

You see sometimes my meal doesn't come close to what is being served in that the kitchen is watching out for me, keeping my meals gluten free to meet my celiac requirements. They do use a Gluten free bread for my bread needs, and they have discovered some frozen readymade pancakes and waffles to serve when the menu calls for those foods. There are outright substitutions for items liked breaded fish sticks. And sometimes complete withdrawals for items like chicken noodle soup (although I know that the noodles sink to the bottom of the cup and it is no great feat to deftly sip the broth portion of the soup from the top and gently with a spoon tease the meat and vegetable chunks from the noodles laying in the bottom of the bowl.) Somehow the kitchen staff doesn't know that I have figured this out yet, they just don't offer any soup at all. I now have several CENAs trained as to what I can eat and what not. If soup is on the menu and they see other trays with soup, they find out what kind and then ask me if I would like some of that soup, then they order a bowl from the kitchen for me.

Now that is an exemplary demonstration and care.

Feeding of me doesn't have to be this difficult. Although most people coming across preparing a gluten free meal is some great first water mystery, it is not as difficult as they want to make it out to be.

So today I was served two full strips of bacon, along with two slices of buttered toast, which I laid one strip of bacon in each slice of bread , folded it over in half, and I had two finger sized bacon sandwiches.

What an auspicious start to a Sunday morning!

Sometimes you have to look for even the tiny things to appreciate. And when they show up, savor every moment to the fullest experience for maximum enjoyment.

Wednesday, August 21, 2013

21 August 2013

Eh, What's Up Doc??

Another day of twists and turns. If it isn't the administration moving people around for what ever reason, its the equipment deciding to act just as strangely for its own set of whatever reasons.

This morning breakfast was preceded by the CENA assigned to my care that breakfast will probably be a little late this morning, both the front elevator and the service elevator weren't working. The elevator repair people have been notified. They have to come from Detroit. They were the same folks who have been here for the last few months installing the replacement service elevator. The story is that most times when it was used sparks would fly inside of the car, then it would cease half way between floors. For the entire time the elevator company was dismantling the old service elevator and assembling the new one everything had to use the main elevator in the lobby.

Lunch was always interesting. The elevator was heavily used by second floor residents,most of whom used the dayroom on the first floor as there was not enough eating space on the second floor. Most of those residents are either chair users, or spend their out of bed time in what looks like an industrial designed chaise lounge on wheels. The occupant can't move it very well except by pushing it backwards with their toes. For each resident coming down to eat, there is a CENA driving from behind.

The elevator traffic can get pretty hectic. The elevator doors open to disgorge usually two residents in wheeled devices pushed by attendant CENAs. The CENAs park the residents just outside of the elevator in the lobby then race up the locked stair well next to the second floor (everything that resembles a door is locked with a numeric key pad around here) to collect more residents. The elevator has automatically returned to the second floor where other residents have been gathered by other CENAs who have remained to collect residents for the next freight down stairs.

Meanwhile more CENA staff are in the day room/ dining room retrieving wheeled residents from the lobby an placing parking them in seating that has been determined by experience. No one has kept track of the experience in a written form like a placement map, instead it tends to be haphazardly performed depending on who is working that day and what they may recall from the past. Two certain individuals are not placed next to each other because they can't (or won't ) get along. Such placements are guaranteed to elicit certainly verbal incidents, possibly physical alterations that could result in injury – ever watch a hockey fight on the ice? Or most interestingly a food fight that envelopes the whole dining room. No body wants that.

Then there are the quiet people who just sit in their chair patiently, giving the appearance that the world is just flowing by them, not giving any impression that anything is cooking inside that head of theirs. Suddenly the meek, mild non-imposing resident might use their spoon like a ten year old might improvise cutlery as a makeshift catapult and next thing you know instant mashed potatoes are flying through the air. The strange thing to observe is the launcher of the reconstituted tubers shows no emotional response to their transgression. The flying starch lands on someone's territory and a corresponding flagrant assault on public nicety ensues, a chain reaction erupts and the mealtime repast has gained an afternoon repercussion.

Of course the post mealtime exodus is just as involved, only in reverse. The mood coming ot of thr dining room is as dripping with emotion as the atmosphere was with food previously. Some of these minds may be somewhat thread bare and worn in places, but you would be impressed at the grudges that can be held and resurrected at any time.

I try to stay away from the elevator and the dining room around meal time.

Its not just the elevators that have decided to have a work action to get some attention. In order to lift some residents from their beds and replace them there are two mechanical devices that come into play. One is a Hoyer lifting device, used for lifting very large people and or those without enough mucsle tone to get themselves out of bed (and back in). It operates with a full sheetlike sling that is placed under the resident, then the corners are hooked into a metal hook arrangement that is electrically motivated to lift the load gently. Once sufficiently clear the whole device is on wheels so it an its load can be moved to where the person can be set down.

Usually the sling is left under the resident after they have been sited in their particular wheelchair. The resident spends the entire time while in the chair sitting on the sling until they are to be removed from the wheelchair. Yesterday it was announced that no longer would the slings be allowed to remain under the resident during the day. There was an immediate howl of protest from those residents who utilize such equipment. The reasons given were that some people somewhere (unstated as to where) have gradually slipped forward and have been found to be slowly slipping out of their wheelchairs. Then as a quick addition it was added that other people (visitors) don't know what the distinctive fabric of the sling is peeking out from under the resident, so ita partly a privacy issue for the resident. A wild discussion broke out among the residents, many of whom use these Hoyer slings. One gentleman said that whoever is making up these rules has never spent enough time with those who need to use a Hoyer lift. Once the person is in the wheelchair how is the sling going to be removed?

Answer, the person bends forward in their chair while 2 CENAs pull the sling down the back of them and then rock them from side to side while in the chair gradually pulling the sling out from under the person.

Ghastly!! To which the gentleman who asked the question responded, “What if the resident can't lean forward?” the answer was we'll just have to work it out. A woman who is very large, so large that her extra wide wheelchair can go on the elevator only all by itself, there is no room for another resident in their chair, asked if being seen with a Hoyer sling under her while in the wheelchair was so embarrassing what were they going to do about her great girth erect a tent around her where ever she goes? I can just imagine telling someone that their chore for the day is to get the fat lady out of bed and into her wheelchair and then wrestle the sling from under her when you are done, or how about trying to get the sling back under her when she wants/needs to get out of the chair, like for a restroom trip. I have seen this woman crying, screaming to the heavens while waiting for the elevator (its slow) to come fetch her to make a trip upstairs to use the restroom. I can just imagine adding the fitting of a Hoyer sling under her while still in the chair in order to lift her to relieve a bladder.

I am not too sure who thought this thing out. Or if they just considered from their own point of view.

Sometimes I am driven to inquire what did they think was going to happen? When I went to the University in May of this year to have a follow up MRI before my appointment with the Neurologist in June, I called to confirm my MRI visit with the Radiology department. I cautioned them that I could no longer walk into the MRI tube this time as I could no longer stand or walk I use a wheelchair. They assured me that was no problem, that they could get me out of the wheelchair and onto the gurney device that rolled into the magnetic tube. When I got there what they planned on doing was to get a pair of 150 pound guys on either side of me and lift from under my shoulders to clear me out of the chair and then just like the movies drag me, feet uselessly dangling behind me to the non ferrous rack device to roll me into the tube. I looked at them and laughed, this is all you've got? Yep, that is what they had planned. After trying mightily for three tremendoustry’s, they about pulled my arms out of the sockets and could barely lift me about an inch out of the seat. They needed to practically stand me all the way up before I would be able to clear the wheels and the arm rests of the chair. Now they were really stumped, their big idea, the scrawny muscle men weren't going to work, now what … I asked if they had access to a Hoyer lift? Someone actually knew what that was and before the eager crowd was able to regroup and manage to try once again trying to lift and inadvertently tear off body parts An old dusty antique looking device was produced to hoist me up and out of the chair. The multitude eagerly stuffed and threaded the sling behind my back and under my rear end and legs. The sling was not evenly distributed but with extra hands holding me in the sling I was lifted up, over and laid out ready to glide into the magic tube.

After I had been examined and recorded for posterity I was removed from the tube and reinserted in my chair, which was out of reach of stray magnetic fields in the other room. The second time withn the Hoyer sling was much more pleasant to experience.

Whenever some great new idea comes down on us from the heights of administration or those in charge, I recall the experience being made ready for the MRI. To those who are only familiar with the ways of disability from the position on the outside as helpers, who have never really stopped to hear or consider how it is from the other point of view, how the one with the disability experiences what so many do, please consider a second deeper thought.

Yesterday in our residents council meeting it was announced that there was going to be a picnic outside on Friday behind the building on the grassy hillside. A big tent is going to be erected so we won't have to be out in the sun all the time, I am assured that it will have open sides so the breeze can blow through. Hamburgers and hot dogs are going to be cooked. The area is behind the building and up a slight hill, slight to a vertical person, one who doesn't use wheels to get around. Oh thats okay, we were told the facility plans on having CENAs push you up the hill. I hope that they will be available to help break us as we descend afterwards too.

This evening when I mentioned this Friday afternoon plan to some CENAS working with me, they had never heard of this and instantly said that they were both glad that they weren't scheduled to work that day. One said that if she was scheduled to work that she just wouldn't come in that day. Makes one feel real good to know that even the littlest activity the administration comes up with generates such overwhelming support from the line workers I can't help but wonder if the elevators both breaking down, the minor equipment breakdowns that constantly happen and some of the less thought out schemes that have occurred around here, haven't help to turn the CENA staff just a little sour on some of the ideas about the running this place.

Sometimes those who administer those who look after us need to stop and consider the consequences of their edicts. Often surviving through a great idea provides a different perspective than just hatching one up.

My particular favorite lifting device
The Easy Stand
(easier on the body than a Hoyer)

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

Tuesday, August 6, 2013

6 August 2013
Afternoon sometime

Another day here in the facility. I find it amazing how sometimes just the little things can make the biggest changes, must be a sign that I am slowly becoming acclimated to living life under these circumstances. There has been yet another time when a staff member has still determined what I can do according to everyone else's abilities. I was encouraged - badgered more likely to get out of bed and into the wheelchair for some change of pace. I indicated that due to the wheelchair being so cramped ( I don't have an adjustable back nor are the leg supports adjustable, so my legs are in one bent position) I can only stand being in the wheelchair for wabout three hors before I begin to get so pain ridden that I can no longer stand to be in the chair.

She told me that since it was near ten in the morning she would make sure to help get me to bed before her shift was done at two. I indicated that me usual time limit was closer to one. Okay.

I got up into the wheelchair and made my usual rounds throughout the building. As the time grew closer to one o'clock I made my way to the third floor where my room is. As per usual every CENA on that floor went about their business able to look right past me as if I were invisible. This went on for nearly an hour as I sat outside my room trying to become obvious. Finally the morning's CENA stopped by and thought I was readyto bargain with her. She asked very nicely if she could go take her break now and then put me in my bed when she got back in fifteen minutes. I could tell that she had her heart set on collecting her break, it did not mater how much pain I was in. finally I told her to go I would probably fall asleep in my chair.

I was awakened by her rubbing my shoulders upon her return. By now I was so painful and tired I could not use the slide board to ease myself into bed from the chair, I had to be lifted with the easy stand.

Many people don't realize all of the effects that go along with MS. Not only can I not stand or walk, I have lost the control of most of the muscles from my sternum down. I can't do a sit up, I have no psoas control, no adductors, no obliques. I can be sat up in beed but I require my hands to stabilize me. I also become very tired if I push myself too much. It has taken a while to learn my new limits. It only takes once or twice to realize that while I am awake nd functioning in the wheelchair, once I have reached my limit, anything after that means lots of nap time when I do return to bed.this means when I say I need to plan on being out of the chair sand in bed by three hours, that does not mean try to get me to agree to even more time when you want to take your break.

Once I was back in bed I slept for the rest of the day, the whole of the night and most of the next day. I was very tired and there was not much I could do to wake up. There are some times that I become very tired and it most often follows too much physical activity.
There are times when I grow highly insulted being treated just like everyone else because I live in the same facility and its easier to make upon minimal set of rules for everyone.

As a result of my sleeping the next day, I was allowed to sleep right through my scheduled shower the next day. Apparently it must be alright to let residents skip a shower once in a while, no need to wake them and ask them, let 'em live in their own filth, won't bother anyone else.

Thats the part I was worried about, being reduced to the lowest common denominator. Being warehoused in the best way possible, to dehumanize everyone to the least amount of humanity available.