Looking for Kuan Lin

25 September 2014

Thursday morning

There are times when I find myself thinking back about the things and events of my life just before I had to leave my home on this strange journey in physical health. I had already paid off my home, I paid down a thirty year mortgage in eight years. The was going to be no more feeding some bank its life blood based on my labors.

I had made numerous improvements to the property over the years, building a sub base for the drive and hauling in yards of bank run gravel, then eventually crushed limestone for the driveway. I made numerous soil improvements to the garden bed, hauling trailer loads of autumn leaves, collected from in town on my way home from work. Also improved the soil where the fruit trees were planted. I hand dug out the roots of invasive Box Elder trees that had been allowed to grow unbated on parts of the property before I got it. I hand dug along the basement foundation on the north side of the building so I could line the outer wall with building foam four inches thick so the house would not lose so much heat through the basement. Then backfilled the entire project by hand. A wood burning stove was installed, then updated to a more efficient model to make the winter heating more enjoyable as when as much cheaper.

There were the usual building maintenance duties that home ownership brings with it, every time I raised the quality higher than it was before. The shallow well was re-drilled to a deeper, more substantial well a hundred seventy feet deep, with a submersible pump installed rather than the older injection pump in the basement. The older oil burning furnace was replaced with a newer, state of the art gas furnace that was much more efficient. An electronic air filter system was installed. A new roof was placed over the aging shingles. The original carpeting was removed and a much higher quality carpet was installed as well as new vinyl florring throughout the house. The air leaks had been sealed from inside the house. A new much bigger entry step was built outside the major entry.

I had over time increased the number and quality of the major tools that I used. A Stihl 32” chainsaw to cut the firewood, an hydraulic log splitter to split the cords and cords of wood that was burned over the years. A lawn tractor to replace the old rotary push mower (it used to take two days to mow that lawn with the walk behind mower), then a zero turn to replace the worn out lawn tractor. Several hand tools like a Bosch rechargeable drill, a saws all, numerous hand tools. A complete stained glass studio in the basement which had seven kilns of various sizes, lots of glass and glass storage, many specialized hand tools, slumping molds and the beginnings of the work to calibrate the kilns to each other. The were heavy work tables made as well as glass storage shelving.

I had recently gone through the entire house and replaced all of the incandescent lighting with special CFL lamps that emitted the same color temperature light as incandescents. I was beginning to research photovoltaic systems to install as further lessening of the footprint of the house on the environment. The inclusion of the dogs over the years made the house a home.

It had shone with potential from the first we saw it, a forlorn little ranch style starter house, stuck onto a two acre plot . The realtor’s photo did not do it much justice, taken mostly to document a listing the image did little on its own as a selling tool. It did not take long for the place to begin to respond to the care and input for it to become a fortress. The plants around it grew into a sheltering cove of greenery to keep eyes from the road away, and the north winds from blowing through unabated, stealing heat from the eves and corners, the very lifeforms joined in with the energy savings. The daily trip up the driveway became both a reception and a welcome back again. The home seemed to welcome me home every time. It sheltered me and welcomed me time and again. That home encouraged my explorations both academically through three graduate degrees and several extra curricular studies programs. As I built it up that home supported me.

After the wife left, choosing to no longer be a spouse, the atmosphere deepened in support. No longer was there an air of contest in the home depending on egos and comparisons , it settled into the undivided support that it had always shone. All of those efforts and all of the expense placed in that home was really paying off. Even other people could sense the specialness of that place.

It was so sad watching that house recede through the back windows of the ambulance as I was carried down the drive on the way to the hospital and completely different form of living. I always believed that everything that I put into that house would come back at some future time, put off as long as possible into that future time, when I would have to sell it. A $40,000 house had appreciated to $115,000 when the wife decide that she needed half as a bonus parting gift to accompany her new solo venture. I carefully explained that I had made most of the payments, especially when I had messed around with a spreadsheet with one of my first computers. I was horrified to see, graphically what the full length of the mortgage payout would be if the full thirty years was used to pay off that loan. $142,000 for a $40,000 purchase did not seem such a good deal to me.

The wife never wanted to recognize that she was still a college dropout making small wages for so many years, while I paid the mortgage. Even after she went back and finished school, she never got a job that paid commensurate wages,nothing interested her. She continued making small money while I just kept on paying the mortage down. I had trouble getting her to pay even the phone or electric utility bills in an effort to get her to be even a junior partner. She often complained that all I ever saw was money, in spite of the fact that too signed the mortgage agreement. As far as she was concerned the mortgage was my problem, until time came to cash out, gather the winnings and move on. Then suddenly half of the house was hers, and she wanted it.

At this point the fortress of solitude became a bone of contention. She pointed out that according to the State, and her attorney, she was entitled to half of the communal property. At this point I was glad that she never wanted to have any children. She would probaly find some way for me to be responsible for them too, after thirty years of marriage. Her attorney had a fearsome reputation of making ex spouses pay dearly. If we would have had children early in the marriage and they were adults at the time of the divorce, she would have found a way to make me pay for their care and upkeep in their adult years. I went to find a loan against the house to buy her out and finish the legal matters as soon as possible. Even the bank was not fast enough to suit her, she wanted her share of the money faster than the banking bureaucracy was creeping along. She contacted me several times to try to encourage me to “hurry up” the process.

I tried to stay as neutral as possible through the whole process, showing no anger or unhappiness at being treated this way. I even helped her move some of the household items out to the moving van she had contracted to gather “her” things from the house. I remember standing on the door stoop waving as she drove away. She never looked back. The sense of relief was highly palpable, like the storm clouds parting after a lengthy all day weather event. I remember when we first moved in the house, there were times it felt like being under a heavy dark cloud. These times arrived when Saturdays rolled around and the schedule called for house cleaning. She could only motivate by becoming angry. At things that didn't matter. Anger is what she used to get going. She never even saw that she was angry, when I pointed it out to her she denied it. Apparently anger was not an acceptable way to be, but she was always angry, at the dust, the need for cleaning, me for not being angry along with her, the dog being a living being in the house, it didn't matter. When she wasn't angry she was stretched out on the sofa napping, any time of day. Her parents had her medically evaluated before we were married. No signs of anemia, disease or any reason for her to be tired all the time. Eventually it seemed that the act of dissociating with everything was the best way to not have to become involved with anything. She napped chronically, at home, when she went visit her folks, even when she flew to see them in Florida. She was just sooo tired it was too much, she needed to have a rest.

After she left, the atmosphere about the house lightened up considerably. I could work on my computers without hearing opinions about it. I could play my practice chanter for the bagpipes without comment about the tone, I could take the dogs for a long walk without having to undergo an inquisition upon my return. When I did ask her to go along with us, all she could talk about was little incidents that people did at the doctor's office where she worked. And all of those comments were judgmental valuations about the people involved , offered in a haughty manner.

The atmosphere around the house lightened quite a bit after she left. There was no time to feel sorry about the loss. I had a new school program to attend to. One that would allow me to gain the most freedom in my work career that I had ever experienced. The freedom to work for myself, without nursing along those whom lent their supervision to my professional duties yet showed lots of their own failings to be as grown up and be adult like in their own affairs. Many little things around the house were put on hold, but so much had been done that the house could tolerate it.

After years of driving daily more than one hundred miles one way on a round trip to Detroit and the environs of the northern suburbs, two vehicles and the onset of this disease mandated converting a vehicle to hand controls, I finished the program. I was inclined to not go through the graduation ceremony as I already had the certificate. One of my friends persuaded me to attend. That was one of the last times I ever drove my car.

Once I was diagnosed with MS things deteriorated rapidly. There were times when decisions were confusing, giving an answer was not coming as quick as people wanted. I was amazed at how people began to covet some of the material things that I owned. A neighbor, himself an individual who had his own issues with too much alcohol consumption, decided that I had told him it was okay to take my hydraulic wood splitter to keep, and a new rotary lawnmower as well, I certainly wouldn't be using them.

Then the State accepted me into Medicaid with no issues based on the MS diagnosis, only after I had been hauled off to the hospital did they reveal the rest of their rules for acceptance: no ownership of anything valued at more than $2000, no income, no savings, stock ownership, no retirement monies, nothing. After all the program is made for those indigent poor people, you know the shiftless layabouts who never contribute anything. Yes the State has just the plan for you. Never been a shiftless layabout? No problem. The State has a plan for you too, same plan as the first one, full of the same shame inducing elements that imply that there must be something wrong with you 'cause you don't have any health insurance. Any special qualities that you may have acquired or earned are all dismissed because you are accepting this state program and that is how we do it around here. We will treat you to the best that anyone who has never owned their own home is allowed. What you once owned your own home? We don't see any home. Stop acting as if you are impersonating a fine upstanding citizen, its not allowed, you shameless layabout.

So my little home that I had put so much into, built up over the years, paid off early to not make someone else wealthy off my labors, the place that always took such good care of me, and had more than doubled in value. Was sold in short order as the State program couldn't wait for this market to reach the house. The Medicaid people were very insistent that the house be sold in just a few months, they just wanted me to no longer own anything, not caring for much else.

My brother had been named power of attorney, for which he felt empowered him with way more abilities that is usually legally given for that office. He dutifully sold that property for about $50,000 dollars which satisfied the loan I had against the house, the loan to buy off the former spouse. He thinks that he did a good job, in fact he won't listen to me about anything regarding the sale of the house or disbursing my goods. Once he grew angry hearing me, he said that I'd better be quiet and not bother him or he would take me to court and have me declared incompetent. I told him that I used to work for the court that conducted those hearings, they don't work that way. He disagreed violently, after all, his son was in law school so he knew the law, don't you know.

So here I am in a nursing home that can only worry about their own hide, and if they can squeeze just a bit more from the operation of this place for the venture capitalists who own the business. I have a solo room in a facility that moves residents constantly from one room to another as easily as chess pieces and with no more feeling than is offered for highway roadkill at the side of the road. There is little to personalize any of this experience, even though most residents try to establish some sense of connection to their room. I know of several women who have been moved at theast three times each.There are hundreds of unseen rules to preclude making the space liveable, right down to no possible ways of extending the four outlets available to plug in any of your electrical devices. No power strips, even the UL approved ones, no plug extenders, no multiple electrical plug head devices, nothing – Fire Marshall says so. And by the way the hospital bed uses one of those outlets in the room. If you need an oxygen concentrator, that is another plug unavailable to you. The food quantity and quality are other matters. The attitude of many house rules make one wonder why is it that I am living here, again? Another way of stating it is: This is living?

The one month of Physical Therapy over a year ago has never been explained to me at all. All I know is that my registered output on the fancy machine was 37% at the beginning of the month and it was 37% at the end of the month. What I was told was this showed no improvement, so no more Physical Therapy for me. I was never told if this was a house rule or if a Medicaid dictate. My thought was, he guys, attention! MS here, one never improves, but physical therapy helps keep joints free and flexible, not to mention some minimal muscle movement to help venous blood flow so feet and lower limbs don't swell. The facility response was that they could have me dressed in TED compression hose every day to deal with any swelling issues.

Meanwhile I am to be a shiftless lump laying about in bed everyday, except when someone from the facility decides to pester me that I need to get out of bed more often and do something. What that thing can be? Playing Uno or Bingo, I just don't participate with the program, that's all.

Golly, I used to have a life, but to speak with the authorities here, they don't have the space or the time, my pursuits are just too special, don'tcha know. So any entertaining of myself is my job alone, just don't request anything from us.

Is it any wonder why I can spend so much time in revery? The powers that be fail to see very far beyond all the limitations that govern their existence. Me, I am bound by far more than the physical limitations of this disease, most of them belong to those who offer the care for me. It is such a shame that humans can be so self limiting that their shortcomings effect so many others.

I dream of other times and other spaces to escape the horrors of this place. I practice acceptance and continue stating what I would like and need. All the while wondering where has compassion gone? Why does it seem so unavailable to so many whom could weild it so well? Do they not see? What are they afraid of? The mess they are making has not come home to greet them … , yet.